Elizabeth Living With Chronic Illness

A Therapist Who TRULY CARES!!!

2011-06-22T22:13:00.000-05:00

I have been seeing a therapist for awhile to help me deal with dealing with chronic illness and my anxiety issues. She is so wonderful and she talks with my other doctors - she is not a psychiatrist, she is a PhD psychologist. She works so well with my other doctors so we are all on the same page.

I had seen psychiatrists and psychologists in the past and hated them all and was nervous about doing it again. But she is so different. I've been seeing her since 2008 and it is amazing now and for awhile now that when I walk into her office - she always turns off all the lights for me! - my body is tuned to auto-relax and my pain level even though high right before - lowers. I've told her I would set up shop and never leave her office - as a joke. I think that when you find a TRUE SAFE PLACE that with anxiety making chronic migraine worse that after awhile your body recognizes it and does do an auto relaxation response - less fight or flight response. I also feel the same way at my acupuncturists office.

But I wanted to tell you about how much a real therapist who truly cares will go for you. I'll add that she says she sees a lot of strength in me and that she even has said she admires me and uses my (anonomously) experiences and reactions and abilities to learn for other patients.

Last year - about a year ago actually - I had an appointment and went to my car to drive there - it's close I don't drive often and only to doctors and close by - anyhow, I go to my car and it doesn't start. Well, you don't go try your car an hour before you have to go somewhere to make sure it works and then go back inside, do you? So, it's a surprise and a problem. I call the receptionist and tell her and here where I live a cab would take too much time. I tell her I guess I'll have to cancel my appointment and pay the fee. She says let me talk to the therapist and get back to you. She calls me back and says that my therapist wants to come and pick me up and doesn't have an appointment after me so can take me back home as well. WHAT??? I have never!!! So, I give her the address and directions and my therapist does this amazing thing for me. So incredible. We did not talk appointment stuff during drive - only small talk. She is very strict about therapy only during therapy session.

SO - today - this morning - I have an appointment and I have since moved but go to my car (I have not driven hardly at all in a while - no one lets me and it isn't a good idea but I thought my hubby was driving the car every so often) AND once again it won't start?!?! - can I believe it? NO. I call the receptionist once again and talk through the same issues. This time she suggests that my therapist may be willing to have the appointment via phone. And she was - since the phone can aggravate my migraine and tinnitus - I put the phone on speaker - also painful - so put on headphones and plugged into phone. It was great because I REALLY needed to have my therapy session.

THEN - if you can believe it - my therapist suggests that for our next appointment and possibly those after seeing how it goes that we schedule when she can come to my home and have session here! First she said she could pick me up and take me home and then she said - or I can just be there!

I couldn't believe it. All I can say is that is how you know when someone truly cares about your health. I didn't have to ask - she gave. She is very professional but is giving! To go out of her way for her patient is unbelievable if it hasn't happened - it is believable.

Also huge kudos to my other doctors who also go out of their way as much as they are able - so much caring.

I am so grateful!!!

As always love and best wishes

Always,

Elizabeth

Another guest post - My Momma dealing with Cancer and hair falling out

2011-06-22T18:36:00.000-05:00

I couldn't help it - when I read my Momma's post for yesterday and talked to her today about how she shaved her head due to the chemotherapy - it was too powerful. She states that she had cut her hair short to get ready for the fall out and then when it happened she was upset and did she have the right to be? And most importantly she expresses such positivity even in the face of such hardship and it is so amazing. I am awed by her.

As I mentioned in my last post her website for her cancer info is http://www.nancyjo.info which gives a place for her to vent and for everyone to give her support and updates/schedules for her medical treatment.

So, without further ado - I give you my Momma via http://www.nancyjo.info Nancy's updates for June 21, 2011 - cancer a$$ kicker!

Today, the hair doth fall…. I reached up to pull down a bang and the whole thing came out. Now I knew this was coming but it hit me kind of hard.

I called Carolyn and she said you knew this was coming “you’re not crying are you?” … “No” I lied but I knew she was right…. it’s like when Tom Hanks said “There’s no crying in baseball” … how do I get to say … I cut my hair so I’ll be ready, then say I’m not ready.

It looked like rain outside so I thought I’ll sit out here and have a glass of wine and watch the rain fall… but even the world knows that this is not a problem… the sun came out as if to say “Bitch, quit it” … so today is a great day and tomorrow at 11:15 I’m getting my head shaved.

I remain constantly amazed at my Momma's strength. I shared with her the spoon theory and website

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ by Christine Miserandino that helped me so much years past when I was introduced to it. Her main website is http://www.butyoudontlooksic.com

Anyway, my Momma grabbed on to the idea so amazingly well - seemed like better than I did and she talks now to me about how many spoons she has left before she decides to do something else for the day.

Love and Best Wishes to All as Always

Elizabeth

Thank You Lord, Ya Done Done It Again!

2011-06-10T19:09:00.000-05:00

This is a guest post - the guest being my Momma who is going through cancer and Chemotherapy. She doesn't have really any insurance and we have worried a lot about her dealing with the financial issues and costs while she needs to focus on getting better. True to form, my Momma - is so positive. We - her best friend started and then we spread the word - had a first fundraiser to help with her medical bills on June 5th. It was a fish fry and raffle. It was awesome. This was my Momma's post on her website - http://www.nancyjo.info after the first chemo treatment and to thank everyone for the fundraiser. And I adore how she signs off as Nancy the Cancer Ass Kicker! My Momma so true to form.

The Title of this Post is a Phrase that my Grandma always used to say when the Lord got us through another battle or just another hardship - Thank You Lord, Ya Done Done it Again! And will be our Team's hat's at the Kansas City Komen Race For the Cure - which we have done as a family for YEARS. We have known so many who have survived or not survived breast cancer and Momma always has made us - and we are happy to - give back! We walk under my Grandma's name as a team as she survived breast cancer although has since passed but we feel her with us everyday. We also generally every other year do a family fundraiser for a local charity in need - however this year - we had to let that go in favor of Momma. Momma pushed us to give back to our community as well as to causes. And to WORK for them. I wish I felt better.

I wish I could sign off as the Migraine Ass Kicker - but I am feeling like I am in a losing battle. But NO MATTER - MOMMA is what matters and her first! So, I have below her post at the website linked and mentioned above after her first chemo treatment because I found it SO inspiring and I hope you will too!

From http://www.nancyjo.info

First, I want to say I’m sorry for taking so long to add to this blog. Everything has sort of been happening faster that I can take it all in.

The fundraiser was amazing, but not just because of the money we raised but the great feelings of hope and love that I felt. My nephew came from Wichita… my cousins from Spring hill… my kids and their spouses and their families and friends, so many friends. I know my kids were just as grateful and amazed at the amount of love and turnout that was there. Plus the whole Ribbon Room family too. Carolyn is the most wonderful person in the world and Brad is so supportive. He and John nearly melted cooking all that great food. What a send off to my first Chemo… it’s no wonder things went so well! Thank you, Thank you, Thank you!

Monday, I got the port put in… hurt but not horrible. I now feel like a Borg, ready to be hooked up to receive the stuff that will kill the stuff. Lil Ron and Jane took me and I was the first one of the day. They were supposed to leave the needle in (they didn’t) so I had to have it put in on Tuesday… hurt, but not too bad (this may be a repeatable phrase a lot).

Tuesday, Chemo… this really went well. They load you up with stuff to keep you from getting sick first so I was relaxed and a little high. The actual Chemo did not hurt, just seemed a little odd knowing that you are being filled with poison. Veronica and Jane stayed with me and we snacked and talked and tried to come up with a game plan with all the different agencies we could apply too. Veronica is doing an amazing job calling and working with the agencies and billing people.

Wednesday, plastic surgeon did not have a lot to say as we don’t know how things will work or how much surgery I will need. But she took pictures and said she was ready to do whatever needed to be done. I liked her and am sure she’ll have a plan when she has more information.

So, that brings us to today, Thursday, I worked today and though I’m really tired I think it went well and will help me keep my mind off of other things. I also got a shot Wednesday that will help me make more white blood cells as well as make me feel like I have the flu. I know the flu part worked – let’s hope the white blood cells did too.

I’ve not been sleeping well, but I think that is a lot nerves and medications, but I’m very tired tonite so I hope to sleep better.

Thanks for all the good wishes and love. I so appreciate everyone of you.

This is Nancy the “Cancer Ass Kicker” signing off.

1 Comment

Drama, anxiety, drama, anxiety....

2011-05-29T18:42:00.000-05:00

I don't know how to even start. It's been awhile since I've been able to be on the computer for any length of time. I haven't been doing so well with the migraine and all my other illnesses/disabilities all feeding off each other don't help at all!

It seems that any activity I gear myself up for and build up my adrenaline because I still want to do things - but it comes at a cost - a crash of pain after. I went to see "West Side Story" at the Music Hall in April and went to see "Rock of Ages" at same Music Hall here in Kansas City in May. Awesome - but at a cost.

My youngest son graduated high school! Awesome and so proud of him - but attending was also at a cost.

Then I got hit with the most terrible news - my Momma has a tumor in her breast. As we waited for the results of the biopsy, my anxiety disorder took full hold. I was having attack after attack after attack - so much so I was starting to hallucinate hearing things - like someone in the house coming to get me and seeing things in my water and things tasting funny and oh my the smells - like all of my senses were in hyper-drive. I was so scared I kept almost calling for an ambulance but stopped myself because I wanted the focus to be on my Momma not on me being in the hospital. Momma thinks I just had the flu.

I got better - a lot better from where I was thinking I was dying and feeling like I couldn't breath - but anxiety still high.

Then, bad news, the biopsy for Momma was malignant and then after her appointment with the oncologist, it is large and grade 2 meaning it is very aggressive. They cannot do surgery until they do at least 4 rounds of chemo first. I want to focus on Momma - my anxiety is high but I am doing that and taking as best care of myself as I can so that I can focus on her.

Then to make things worse for some unknown reason my brother and ex-husband (father of my kids) who are friends, which I have always hated, but dealt with, have started crap with me attacking me and threatening my kids and telling them things that aren't true. I cannot figure out what this is about. All I know is that all 5 of us siblings got together to talk about Momma and my brother started up with me and I said I didn't want to get into anything because every energy and everything needed to be about Momma.

Well, he kept on me so I walked away. He followed and I said I won't fight with you because it all has to be about Momma - nothing else. Whatever you have on me, let it go and leave me alone - focus on Momma.

That didn't work - well, it did for me - he left me alone. He escalated things by calling my ex-husband and then my kids and my ex calling my kids and threatening them and saying lies and frankly nasty things about me that no child - even as an adult aught to hear true or not - although all were lies. And physically threatening my 22 year old son.

When I still didn't respond or react - trying to diffuse the situation - AND MY KIDS KNEW THEY WERE LIES - so we could re-focus on Momma. I today get a text from my brother that "I am no longer your brother fyi" - what? The argument wasn't even about anything that he was trying to start that I walked away from - just arguing to argue and I wouldn't do it!

Then my brother calls my son and tells him that my ex-husband is my brother's family and if my son is going to defend me then HE is no longer part of my brother's family either.

All I can think is WTF?!?!?!?!

I will not ever tell my Momma about this - she needs to focus on her not on whatever this is. But it is also sad because she is also a friend and I can't talk to her about something that is hurting me and my kids. But that is fine - best that she focus on her because she is going to need it and I can handle it.

I say I can handle it and I can. But, my anxiety level is now hit by pain, by treatments that aren't working yet, by my Momma and worrying about her and now also by this BS.

I send out prayers that I can handle the stress and anxiety so my health doesn't get any worse. I send out prayers that a calming hand will allow me to focus where I need to. And I will NOT REACT to this.

I always thought that walking away/not joining the fight diffused situations - but somehow it has escalated this tiny thing into something beyond my comprehension? I wanted to talk to my therapist this week about my anxiety and my Momma - and now I have to bring this into it as well for her to be able to help me. It just seems ridiculous and insane!

I try to think that my brother being worried about my Momma has him a little out of his mind - because it has for all of us. Just not this way he's going. BUT, it is NO EXCUSE for my ex-husband to threaten his children and say the things he's saying.

I stand by that I will not react or respond to this because my children have said they can take it and that they believe in me. I stand by that that is the best way to not escalate it further and to if not diffuse it - to be able for me to focus on Momma. And on my own health.

I wanted to write a post about the details of my anxiety disorder and the attack. But I guess I just needed to get this off my chest in some way without escalating things. Because he nor any of my family read my blog. So, I can send it out to space without escalation. And I can ease my anxiety perhaps a little by writing.

As always I wish you all the best of health and the best of everything,

Elizabeth

My Botox eperience

2011-02-25T09:59:00.000-06:00

For my migraines, I had my first Botox treatment in late December. We have scheduled a second for the end of March. I was aptly told that it would likely take 4-5 treatments, every 12 weeks, in order to see if any progress could be made with my migraine.

The first treatment did not effect my migraine or my cervicalgia, however they also did injections in my traps and my back and shoulders are so tight with so many knots, it actually after 4-5 days released some of the knots. Not all, but progress. I am hopeful for more progress there and then up into my neck to start working on my cervicalgia. Working on this should help the migraine as one feeds off the other.

Interestingly, when I was at the neurologist yesterday and was mentioning how my Essential Tremor has, although improved some from last September, is still very bad in my left arm and hand mainly - although present and seen in my right hand - it acts up with any activity.

The interesting thing - my neurologist suggested and ordered more Botox and is going to have the neurologist who does the injections (they already were increasing number and amount of Botox) to put injections in my arm and see if it helps any my Essential Tremor.

I am excited, although patient and realistic, to see how things go.

I have heard from others how sore and painful their Botox experience has been. For me, my doctor gives me two Vicodin and a Lidocaine numbing cream for before. I take one Vicodin 2 hours prior and one at the time of my appointment. The Lidocaine cream I put on - well someone puts on for me - an hour before. And I did not have this soreness and painfulness. The injections did hurt - but no where near how bad my migraine hurts so easy to brush off for me. I also received Lidocaine patches for my traps for after the treatment to put on right away and then again the next day also because they said it would be really sore. That helped a lot and then I didn't get the experience others have mentioned.

I have heard others do not have doctor's give them the meds for this pre-treatment and perhaps it is cause of more pain. I know I definitely said I needed the vicodin again for my next session because what I had heard from others and I thought that must have tempered it.

I also can say that for my migraine - Vicodin does Nil, Nada, Zilch - no effect or help for migraine pain. I know others take Vicodin for their migraines and it helps which shows everyone is different - but for me, nothing. Same for other narcotics that I was previously given for migraines - Oxycodone and the like - did nothing for the pain. Maybe made me "care" less - be more out of it - not the Vicodin but these others - but did nothing to temper the pain. But did hinder my thinking ability even more than the Migraine does - along with other chronic illnesses - so I don't like them personally because I like a sense of control, even with the constant pain.

Anyhow - those are my thoughts and update on my Botox experience. Next up to look for - my month long drama with a problem with medications having nothing to do with doctors or prescriptions but insurance companies and going without and a change that made February so foggy. Thankful for my appointment yesterday that straightened some out and already seeing the me back again some. Hey there - missed you.

As always I wish you all the best health and best wishes.

Elizabeth

copyrighted by Elizabeth Wakefield

Just another day...

2011-01-08T18:23:00.000-06:00

Many friends and family tell me of their days, their plans, the things going on in their lives. Some are good, some are bad and I love being a friend to listen and be there and love to hear what's going on.

Their days and plans seem so familiar to me as something I once had. And is missed. Even some drama going on - not that I want anymore than I already have - is interesting to listen to.

I have drama - a lot of it. And it doesn't all center around my disabilities. I have other drama unrelated or semi-related.

But here's my day - just another day...

I wake up to an alarm from getting hardly any sleep - any real, restful sleep to take my thyroid hormone because I have to take it at least an hour before I eat or take anything else.

I wake up a second time after not really back to sleep but curling up in pain and trying to erase the world. The second wake up is to a second alarm. This one to time to take out the trash and more importantly, to take my first set of medications and supplements for the day - primarily 1) to ease pain and 2) my medication for narcolepsy so that I can truly wake up.

Then, I wait, curled up and in pain waiting for a little release - and when it comes - that means it is time for my first set of meditation, yoga, and physical therapy exercises.

NOW - if I have doctor appointments during the day then I have to work around these - they may push back a morning exercise or if in the afternoon push one of those back - or delay when I can take certain medications so I am able to drive to the appointment and additional activity - especially outside - increases the pain.

Then comes time two hours after medication to take additional supplement and additional medication (we are attempting to separate some medications from others so I don't only have three times a day of relief possibly).

I have of course eaten breakfast with my first set of medications - or really second after they thyroid one.

Then I do try to do something calming and relaxing. I feel guilt about needing to do more around the house but am generally yet unable.

Lunch and mid-day medications. The pain has slowly risen back up again so I am anxious for this and then rest while I await another temporary reduction in pain. When happens, I have another round of meditation, yoga, and physical therapy exercises. This sometimes aggravates the pain so much needed rest.

Two hours later, I get the rest of my mid day medication.

IF I feel up to it, I try to do some dishes, some laundry and pick up - aggravates the pain. I also do my sink-bath. I am unable to take showers and can soak in the tub for some migraine relief, but bathing in the tub generally is too aggravating.

All of this has my Essential Tremor up and going strong and is difficult for me to do much else and if also the pain has risen up badly I am in resting state again. I try if I am able at this time to take the 4/10ths of a mile walk to the mailbox - I like the extra exercise but get nervous that I won't make it back home. I always have. Adrenaline is a push.

By the time my husband gets home from work at 6:30pm I am back in horrid pain and I feel guilt about not getting him to have the best part of my day with me.

I can generally eat dinner which he cooks for me - AWESOME cook that he is. (Note: he also cuts up fruit for me as snacks during the day as often I cannot eat a "meal" but need only to snack through the day).

I try to visit with him and do things with him but often it is him seeing me in pain and awaiting my evening medications to ease some pain.

Three times a week I can take an extra pain medication to ease off the worse days - good, but generally makes me sleepier. On a day when I take the extra pain medication - I may be able to have relations with my husband - but it is not a common theme. I miss being close to him and I miss him. He has gotten very good at holding my head cradling it so it is as still as possible - but always we both know my pain will increase.

Anyway - after my evening medications have had time to take effect it is time for my third set of meditation - which generally is skipped or interrupted due to not being alone - yoga and physical therapy exercises.

Again - this is a day without doctors appointments. Which interrupt scheduled times for things and cause need for additional rest and relaxation as pain spikes up.

In afternoons when I can, I work on calls that need made, bills that need paid, budgets, and other things that need taken care of - the phone causes additional pain if I am on too long or for some reason some voices.

In evenings I can sometimes relax and get on the internet for a little while. I do scheduled chats on http://www.chronicbabeforum.com when I am able to on Thursdays and Sundays and that is awesome.

I get calls from friends and family in early evening - a few times a week - to catch up with me and if I haven't heard from someone in a while I make the call.

Every now and again we have a couple people over to spend an hour or two - maybe just to play with my husband with all his toys - or to spend time with us. This also is SO wonderful and what I want so much. I do have extreme spike of pain when they leave - I think generally because I have been trying to hide my pain while we have guests. But we know that's going to happen just like going to the doctor will and so is well worth it.

My husband also works on Saturday and Sunday - generally Monday's off when he can just crash and relax himself. He also works at home on his building business as an artist - I love seeing his work which he always shows me whether that day or the next. He also spends time with his instruments and recording music - YES, he is an artist of all trades and awesome at all of them.

I also even though I am on disability - there is a lot of work to that - manage those issues and concerns. I also as I want to get better try my best to keep up my continued education requirements for my CPA license which is money out of our own pockets.

My husband takes time out to go to visit his family and to go out with friends - I think this is important - VITALLY for him - because if he waited until I could go with him he would start feeling trapped.

I am sick of daytime and even a lot of evening TV - but I have to have either music or TV on all the time due to my tinnitus. The best music is on my computer and sometimes the headphones get to be too much. I leave the TV on as a low background noise to temper the constant ear ringing.

We have family outings and with friends - although rarely - and always they know that it may just be my husband if I am unable to make it.

I talk to my kids - they are grown up - mostly through texts or emails daily with calls when we can and see them when schedules permit.

So, when my friends call and say what have you been up to? I am happy for the question, but also get tired of saying the same thing - all of the above. Don't they get it yet? Probably so but are asking and is good because there is news sometimes. Not generally my own but drama from other things.

So that is my just another day in the life. I used to say I missed my old life but I am not sure I even can comprehend that anymore. I just want a day - a week - with low pain where I am able to feel like a human being.

I keep trying and I will make it.

Another day in the life - keep trying and hoping...

Best wishes to all and wishing health and happiness.

Elizabeth

copyright owned by Elizabeth Wakefield January 8, 2011

Happy New Year - Resolutions - PAH

2011-01-02T19:49:00.000-06:00

First let me say a Very Happy New Year Wish to everyone for health and for finding answers and all that you need.

I hate the time of year of resolutions - I resolve EVERYDAY to try to get better, feel better, find answers, work on my health, etc. I don't need a time of year for it.

None the less, so many around me are wanting or resolving for me that this be the year I am cured.

Can I not say it enough that there is no cure for MANY of the disabilities I have, if not NONE. So I can only assume it is due to 1st) wanting me to be well and are heartfelt well wishes; 2nd) wanting to clear their own consciences. Now, I may be a bit of a hypocrite here because I started out with well wishes for health and finding answers. I think what I want, and resolve each day for is that for you and for me that we have better health, are able to manage our illnesses, and for those who remain undiagnosed, that they find the answers they desperately need.

I would love to say I need to lose weight and exercise more. My current problem as has occurred in my past as well is underweight and need to gain. I hate that people say their jealous I'm skinny, because they don't know all the troubles I have with it. I want to be a healthy weight - which many lately can definitively tell I am not and don't express things as jealousy. I used to hear, I wish I had your problem - trust me, you don't. Can you explain why I am hypothyroid and losing hair like mad but yet finally get my levels under control and still underweight and losing hair? Neither can doctors - in fact caused me to be undiagnosed for a long time.

Due to my constant intractable, transcendent migraine I cannot move my head to do much exercise. And tried Ensure drink to gain weight - and guess what - it contains, like many of them, as a first ingredient a type of hidden MSG - making migraine worse.

My narcolepsy keeps me from any good sleep and tired all the time, not that the migraine helps.

My Essential Tremor gets so bad that I can hardly feed myself let alone other things - and makes strangers wary of me.

Okay - obviously I have a lot of anger - and primarily due to anxiety. I go so fast from sadness, loss, and loneliness to anger at people or things I have to manage.

I am SO GRATEFUL for my husband and feel badly for him having to deal with all my issues.

Then, on top of everything I got another blow I wasn't expecting with my ex and how he is interacting with my children. I express concern and get the same as I get "the strong one" that my kids are strong and they will survive it? What? Get mad? I can't be the only one... I can't do much to help. Yet, I will be the one that does the most and takes care as much as I am able to ensure their happiness and health - while putting my own in jeopardy.

My husband is just as angry as I am about this. But not much he can do with working all the time to take care of me. And not having solutions himself having not had children or dealing with an ex.

So, I will continue my daily resolutions and ignore the stupid time of year where I am supposed to make an overwhelming resolution.

I get day to day. And I try when I can to improve day to day and find ways. Some days that isn't possible.

I will try with my therapist to help get this anxiety under better control. My anti-anxiety meds should be doing their job - it's just I've been hit so many times lately and as my therapist said, I should feel loss and I should feel angry.

I will try to associate with people who are better at understanding and helping me. And I will try to accept people for who they are. Not a new resolution - same one every day.

So PAH I say to New Year's Resolutions! Resolve everyday to do better, and try...

All the best as ever,

Elizabeth

Holiday season with Chronic Illness

2010-12-28T00:02:00.000-06:00

Oh, how to begin, the good, the bad and the ugly says it all. Great movie too.

My heart was overwhelmed being with my kids and new addition - semi daughter in-law - they aren't married but together for so long now we included her in our small family gathering.

The bad - the driving and the drama of family - outside immediate - and how hard it is to make everyone happy and comfortable and pretend you aren't hurting.

My husband's family was so great - I kept getting up to play with the little one's and my father-in-law kept putting me back to the couch to rest.

The ugly - the aftermath and stress let down increase in pain that left me nearly paralyzed. Kind of did also the week before.

I have been going back and forth between deep sorrow and crying and deep anger at things that are out of my control. Working with my therapist and have my anti-anxiety medication but best tip from therapist and neurologist is to stay away from people that aggravate that part of me. Hard to do - well I'm sad because I get lonely and I get angry that people aren't there for me in the way I want them to be. And how hard it all is on my husband too.

And people I don't want to push away either. I have to learn to accept people for who they are but it's difficult. Then work adds another loss - and anger.

Then I hear horrible things that my ex-husband is doing and saying to my kids and that's hurt because I want to care for my kids and not have them have to deal with that crap and deep anger at the things he's doing and saying which I have to hold back around my kids. Well, somewhat - I have to hold back the anger, but I also have to show them the right way.

I pray for guidance on this issue especially!!! I wish I had the means to protect them but with my disabilities that has been taken away - at least financially - and also being able to be there when I can't because I'm sick.

So, Good, Bad, and Ugly -

Tomorrow I go in for my first Botox treatment for my transcendent intractable chronic migraine. They say it will hurt really bad and have given me medication to dope me up and topical anesthetic to put on before appointment - have to have help with that. And have to have a driver. They also said it would take 4-5 treatments to know if it will help or not - because of my condition. And I change insurance companies January 1st so hopefully the new one will agree to the continued treatment and I don't only get the one trial.

Every year this season is so difficult as I am certain it is for many of you. Even going to family events - my family is large - and still people wear perfumes, etc that make things worse.

I had some wonderful times - also including my son's 22nd birthday on the 21st of December which was really nice and we had a good time - went to dinner (very infrequently for me) and I did good - we stayed relaxed and spent time together. He was happy.

Included in happy times and amongst my husband's wonderful gifts to me was so special - he's an artist - and he carved this balloon man for me! Sorry the picture is a bit fuzzy but I have tremors and it's the best I can do. Behind it you can't see is a flower pot but inside is a present from long ago he gave me - it's a metal sculpture of a flower - maybe a picture of that later.

I will leave you with this - as my eldest son left on Christmas day he stopped and said "Thank you for... for just being you." What better present is there?

I wish you all the best and health and love and happiness.

Elizabeth

copyright Elizabeth Wakefield December 27, 2010

The Strong One, The Survivor - BEWARE DIFFICULT INFO IN BEGINNING

2010-12-20T18:22:00.000-06:00

All my life since I can remember, I was told what distinguished me from my brothers and sisters and cousins and even aunts and uncles - I was the strong one, I was a survivor.

I as a child endured a some horrible events. It's hard to talk about, but I will very briefly state so that we can move on to how this vision of me by family and friends now greatly affects my disability.

I don't wish to go into details, but I will state that 1) I was sexually abused for 4 years by my step grandfather; 2) my mother which whom I lived had to work more than one job to take care of us and was difficult in the 70s - a baby sitter she hired sexually abused me - it was about a year into the other sexual abuse so I felt no where to turn; 3) my mother is bipolar and is incredible now, but as a child I dealt with her mania and depression and even her being in intensive care more than once and aunts/uncles and mostly my grandmother coming to be with us; 4) as a child I overheard my mother describing a brutal rape she endured at knife point by two assailants - I was supposed to be in bed.

As many children do I didn't come forward in a normal way about my abuse. I told a friend at school immediately who told me that it happens to everyone and your not supposed to tell - we were children - and I see now she was being abused too. After a year I told my older sister who told me not to tell anyone because it would upset my dad's new marriage but that if it kept on to tell her again. I went into a shell. For some reason after 4 years - my older sister now 16 and had stopped seeing my dad for a number of years so had not happened to her but very few times years before - anyway, I for some reason in the back of my mom's car on the way to the movies said to my sister "you know years ago when you said if something happened again I should tell you? Well it hasn't stopped and been going on ever since." She turned and said to my mother what I was talking about and then it was out of my hands. My mother didn't go into the movies with us but spent time outside on the payphone. By this time we lived far away. Next I knew my mother had somehow gotten him off the streets as a mail carrier (through a friend of hers also in the post office) and we were going to court. I must say that the nonhuman male when arrested admitted freely to the officer before the officer even said why he was there!?

So, because I was the strong one - being that my sister broke down and cried and cried and took the attention away from me - and I tried to be strong - my family decided I wouldn't testify - only my sister. I, ironically, was in the care of his daughter - my stepmother - who was very angry at me for us being there and let it be known it was my fault.

The outcome was the outcome, and not as harsh as my sister as I said was then 16 and didn't look like a child at all. So, he was out to injure again, not me, but others and was on trial for those later. My father decided to (because of my stepmother?) forgive him. And I spent time as a teenager and later as an adult having to come into contact with him - no more. And not EVER my sister. It is what it is.

So, why do I say this was part of the start of it? Well, it wasn't the start - even before this as a small child, I was told I was the strong one and would be able to handle anything. This enhanced this feeling - I was told I was the strong one and a survivor while my sister couldn't handle it. She needed help, but I could overcome.

This moves us forward a bit to a rough teenager I was, MESSED UP, but not in my family's eyes. I would get through and I was strong and would overcome because I am a survivor. Well, my messed up days ended with me making a horrible decision to come into a relationship with a man 26 while I was 16. I became pregnant. He was thrilled and wanted to marry me. I said no. Then, my sister, who was 20 became pregnant herself and my family decided that they needed to take care of my sister while I was strong and a survivor so my mother arranged my marriage within a week and then I was married. I had a second child with my husband. I WILL NEVER REGRET THOSE INCREDIBLE CHILDREN WHO ARE MY SOUL AND JOY AND HELPED KEEP ME STRONG.

Well, I can tell you this - although we are no longer together and I do not have good things to say about him - I am strong and I am a survivor. As much as it hurts, they were right. As I was going to college and getting older and smarter, this was bad in my now ex-husband's mind because I was quickly becoming smarter and more wise than he. Abuse - whatever - we should have seen that coming with a 16 girl and 26 year old man.

I asked for a separation as I kept becoming more and more aware that I was better than this. As a Catholic, I did not seek divorce, but he did and we were. Because I am strong and a survivor I did make it through.

I can go through my ENTIRE life years after this during which times I had difficult times as I was only still 22 at divorce and am now almost 40, and did have MANY more times of difficulty and tragedy and was even myself a victim of rape. But the importance of all is that I became the first of generation of the family to graduate college and get a good job and be successful at it - even very as I became a specialist in difficult areas. I was strong and I did survive. I did so mainly by my own means as my family gave me support in the manner of "rah, rah" talks, "you can do it," "you're the strong one" talks. Very important, yes, and very helpful, yes. They supported me by inspirational talks about how strong I was and how I was stronger than others and I could do it. They were right.

In the meantime, and still, other members of my family, didn't get this kind of inspirational "go do it" talk. They got "oh poor you" and financial assistance and all that jazz. When I asked for help in this way, no, I got - You are strong and a survivor and YOU will make it. They were right.

Let me say CLEARLY here that my now husband - INCREDIBLE - was not like this. He told me I was strong, yes, but he comforted me and HE TOOK CARE OF ME and STILL DOES. He goes FAR out of his way to do so. His family is much the same towards me. They also see me as very strong, but they also give me comfort. Yes, inspirational too, but comfort and help.

Let me also say that I have friends that are the same. I have friends that treat me as my family does and friends that are comforting and helpful.

LET ME ALSO BE CLEAR - MY FAMILY LOVES ME (and not all of my family is "inspirational talk only" by far as I have a vast family) - MY FAMILY WOULD GO TO THE ENDS OF THE EARTH FOR ME IF NEEDED WITHOUT QUESTION THEY WOULD WALK THROUGH FIRE!!! I am NOT putting them down here - I am merely stating that some members of my family - a lot of them - see me as SO strong and such a survivor that if I am at my wit's end that the strength will boil up and I will overcome. AND THEY ARE RIGHT so much of the time. While others falter and lean on others, I do stand strong. AND I AM PROUD OF THAT!!!

So, here we are, and my disabilities have put me into a very bad spot. I am the Strong One, I am the Survivor. I Shall overcome. Well, as many of us with chronic illnesses know, there is no cure. There is not cure for any of my disabilities in fact - they are hormonal or neurological problems for which there is not cure.

That of course does not mean that we cannot live a good and fruitful life. We have to MANAGE our disabilities. Unfortunately for me, recently - over the last few years, my disabilities have become debilitating. So much so that I am now on disability from work. Which is so sad and hurts.

I appreciate everyone of my family who is inspirational to me telling me I am strong and a survivor and will overcome.

I am appreciative of all of my friends who are the same.

I have had a hard time with some who see me as the strong one and the survivor believing that my disabilities will not be CURED. That I will not overcome and be back to me the way I was before. Because of this, and because of my constant pain and difficulties, I have had as MANY OF YOU HAVE had to endure LONELINESS as people draw away. As people want the "old me" and don't like dealing with the "new me" - even when the "new me" tries so hard to hide my disabilities - although some cannot. They don't want to talk about it - they just want the old me and are sure that I will with doctors overcome and be back. It's like they feel like I'm not being me because I cannot be strong all the time and get the feeling and even have heard that if I just TRY HARDER I will overcome.

We all go through this - we all talk about it and listen to helpful accounts and suggestions in conferences during Invisible Illness Week. These ARE so helpful. (by the way this past September's and even older year's "conferences" can be accessed as I do and listen again to helpful tips at http://www.invisibleillnessweek.com at the virtual conference tab.)

I am the Strong one and I am the Survivor.

Here now is the rub - the GIST. Although all this is true, I NEED HELP SOMETIMES. I AM LONELY. I FEEL GREAT LOSS. I NEED HELP SOMETIMES!!!

I have asked for help from those who see only the Strong One, the Survivor, and they say yes, of course. And when the help comes, it is in the form of not what I requested, but an inspirational speech of how I will overcome this and how strong I am and I will get better and just have to believe it, etc... I have broken down and cried and asked for specific help and I get much the same. Now, I do get rides when I need them and help and support. Which I love. But sometimes you just need HELP!

I am the Strong one, I am a Survivor. And as my grandmother said "This Too Shall Pass" and I will have better days and I will cope and will find my way back to a better life.

Right now, I am sad - I am in mourning. I go from deep sorrow to anger to determination to overcome and back again.

I ask my husband to help and he drops everything and does anything for me. He gets it!!! You know?

I have family members and friends that I can go to and talk with and they listen through it all and don't try to tell me I'm overreacting or need to be strong. They are just there for me. I have friends that although it's difficult with their busy lives, come over and spend what time they can with me.

But it has been ingrained in me that I am the Strong one, the Survivor. So, I don't ask them to help me with dishes or the laundry or shopping for the holidays or the many things I need help with. Because I have bought into what has been told to me all my life. That I can do it.

An example, I had a medical bill from the early 90's when I was uninsured for a non-voluntary admission to the psych ward. Later, when they figured out it was my thyroid that was causing the symptoms, all that disappeared. Anyway, I didn't have the means to pay. And I was a bit angry because I hadn't asked to be in the hospital. Well, years past and it ended up going to a law firm for collection and I was sued and lost but remained unpaid. Interest and other grew on it but I couldn't get it paid with other bills, kids, etc... In October of this year, I received a letter that I must appear in court in November to give financial information and the judge stated "it will be no undue hardship on Elizabeth to appear." Well, little did he know - I couldn't drive, I with my migraine would not be able to handle, NCS would cause me to faint, driving with my Essential Tremor was a bad idea, my husband worked that day - really he works everyday - and with constant migraine, narcolepsy and medications - I wouldn't make much sense. AND - I was on disability so the financial information they were asking for wouldn't show my true financial state. I asked a family member to help me. This person came to my house and gave me a go-get 'em speech but said that would help me get an attorney to appear for me or would appear themselves on my behalf and not to worry. So I didn't. Then, came two days before the court appearance and nothing had been done to help me - and the day before when asked by my husband was "she's strong, she can handle it." Well, as it turns out, no I didn't go to court because I couldn't - but I AM STRONG and my inner strength and adrenaline drew up from me and I called the law firm and took care of it - even got all the interest removed. I took a distribution from my 401K and got it paid and no court date. I did this myself.

What happened? Well, I did it - I was strong and I did it - I also because of the adrenaline, suffered from worse pain for the next 4 days. I truly needed help, but in the end I did it with my strength.

Which is why I say I do buy into it. I don't ask for much of anything anymore. I do hear a lot of "if you need anything, let me know" and I lay my burden on myself and mostly my husband - poor thing.

What I want desperately to hear is not "if you need anything, let me know" - but someone to specifically offer something specific that is help for me. SPECIFIC - not the line that makes me feel bad if I do call and ask for something. I've heard this same thing during the invisible illness week conference - so I KNOW that many of you that suffer chronic illness deal with the same thing.

I know also that strange as it may seem, that so many of us with chronic illnesses ALSO are incredibly strong people - we even feel badly asking for help.

So, I think I am not alone in the Strong one image, the Survivor image - and it is so hard to ask for help - especially when it is returned with an inspirational speech rather than the help you asked for.

I think that many are in worse shape than I am. My children are grown - or nearly - my youngest a senior in high school - so I don't have issues of needing rides to or pick ups from soccer or whatever. Or babysitting, or whatever. I also am not in school anymore so I don't need the help dealing with exam weeks or studying. I am not single and have such a loving and supportive husband so I don't have those issues - although the burden on him is also growing and heavy - and HE TOO doesn't ask for help EVEN FROM ME! He needs help too.

I don't know how to end this - I've given some background that is really private and please don't feel bad about that - I could give other background that is horrible as well - my father not being in my life but being in my siblings lives which I don't understand what I have done to have him single me out. A second horrible ending marriage (cheater) which nearly destroyed me.

I have been strong and I have survived and I became a very strong and successful individual. But then the disabilities took hold and I can't fight them they way I fought through and overcame other things. In fact, the more I fight, the worse it gets. I want my life back too - but I need to find a new way to be strong and survive and a new me. Right now it's hard to see me through the pain, but I don't give up ever. I am strong and I am a survivor - that is true.

I guess all I can say is that my family - my grandmother, my mother - saw something in me as a very young child that is true. How they saw it, I don't know - I think my grandmother and mother were in the former and is in the latter both INCREDIBLY STRONG women during even difficult times for women and even now my mother is a force of nature. She battles her own demons and she survives and she is SO STRONG. My grandmother was the strongest women I ever met.

It started with them seeing in me what was in them. I am like them and I am proud of that. I am Strong and I am a Survivor.

I am proud of that. And it will get me through this. But I also need help and so does my husband - how do you ask? I wish sometimes I didn't have to - that through all of this so many have seen what I need and they would just help. What do you do? Or are you like me?

And please don't worry about my past and concerns or sympathies about that - I have overcome - I share because it is part of who I have become. I would rather the concerns and sympathy come for what I am now going through - my disabilities.

As always - I wish you all well. I wish you strength and I wish you help.

Elizabeth

copyright owned by Elizabeth Wakefield, December 20, 2010

The "let down" from stress migraine trigger - UGGHHH!!!

2010-12-01T20:59:00.000-06:00

So, Happy happy news! I found out I was approved for my long term disability insurance!!! That has been so much stress - financially (and then how all of that impacts my pain and anxiety).

I felt relief and relaxed some when I got the news - which by the way was by receiving a strange email from work which made me check the website again - which I did every day and had called the previous day - and on the website said approved - not a call and didn't receive the letter for 4 more days. I still have to do the social security disability but am waiting to rest first till January as all the paperwork and all is stressful and hard.

Anyway, I felt SO much relief the night I found out on the website. I had a lot of questions regarding money and budgeting and health insurance and all that - that's the CPA in me! - but I let it go that night and just relaxed that everything was going to be okay and whatever the answers to those questions were that at least we wouldn't be homeless and could pay bills and would figure out health insurance someway.

Now - let me be clear - I have chronic intractable migraine that is also transcendent. Basically meaning that I am always in migraine state without stop. So even the relief isn't a relief from all pain but was a relief.

Say - oh I almost got political and was going to talk about torture or what some may say qualifies as torture - whether by our military or others. I am thinking I will go with another analysis - don't want to hit any nerves. I could have just left this paragraph out or deleted it - but for me this is stream of thought so there you have it - a useless paragraph.

So - to give an example of staying in pain but relaxed you have to imagine that relaxation isn't relief of pain but a let up of some pain or just finally some muscles relax without lots of meditation and foci.

Let's go with an example not related to pain per se - that many can relate to. Say that you owe $25,000 of CC debt and other debt home, school loans, loans for your kids to go to college, etc of $100,000. And you have just enough coming in to cover interest and barely touch the principle amounts so in effect you feel like you are drowning and fighting your way through every day looking for a way to make things better or just be able to do more than pay interest that seems to go nowhere helpful to you.

Then you find out that you bought a lottery ticket on a whim and you don't win BIG - but you win enough to take down your credit card debt to $10,000 - still it is going to be difficult to get everything paid off and you don't have more to come in but now the interest charges each month are lower so with same payments more can go to principle and get the debt down much more quickly.

You still have issues and worries and stress, but you also have some relief - that is if you used your winnings to pay down debt and not go on some spending spree which you were smart and paid down debt in the scenario - otherwise you have done nothing to help your situation.

So you can see the sigh of relief, the breathing room, the light at the end of the tunnel. For me, it meant not only helping financially because I was going to continue to have funds coming in rather than none, but also that I could go from worrying month to month to knowing I could truly focus now on feeling better. Eight months ago I could get into a meditative state to do my yoga within 20 minutes (which is necessary because the pain tenses me up so much that yoga without such could injure me). Then 2 - 4 months ago it was taking an hour or longer - sometimes much longer. And in the past month I have been unable to. Because of my anxiety disorder along with the migraine and everything got to tensed up and I try 3 + times a day at meditation and I can't reach what I was able to do before. Sometimes I can after a long time but not like I used to.

So the relief I felt was like a much needed let go of tension and some relief of pain - although not gone. I was so happy!

TO THE POINT!!!

The following day was good and I was feeling the same and then around 1:30 or 2pm BOOM!!! Massive increase in pain and for the next 5 days I could hardly move or talk or anything because the migraine was SO bad.

That's when I remembered, yes stress is a migraine trigger for me as well as anxiety, weather, certain foods, many scents, lights, etc... But also just like after the end of EVERY tax season even before the transcendent migraine I would crash hard and have bad migraine for days on end.

Because the let down from stress is also a migraine trigger for me! YAY!!! Oddly, I knew this but was so excited about the relaxation, it skipped me until a day after I was hit and couldn't figure out why it had gotten so much worse so fast and had checked diet, etc...

Same thing after Thanksgiving and my beautiful sister's birthday party. I psyched myself up and adrenaline kicked in so I could attend - because I cancel so frequently - and really wanted to see family and be with them. And after CRASH!!!

My darling husband worried and at my sister's birthday party wanted me to leave because my head was hurting worse and worse and he was worried about the crash. I had to explain to him that we knew and know it's coming! But I need a life too.
And even small things bring it on - like niece and nephew coming over to show costumes for Halloween and after I crash. Like when I have to go out to the doctor or worse the store that we know after I crash!

I explained that we have to live with the ups and downs just like if I go somewhere and someone is wearing something or an aisle in the store has smells that relapse me. This is my life. The good point of it all is that now that I have some stability with the approval of LTD for a little while I can focus on getting more of my life back. That the ups and downs can be more managed as I get back to being able to get my meditation foci back and starting in January should be able to budget some to my acupuncturist again (whom I haven't been able to see due to finances since last April).

Another awesome thing and again I have to say I am blessed with my team of doctors - I cry about it - my neurologist PA told me to go back to the acupuncturist when I could manage in my budget or to call and ask for reduced prices. THAT IS AMAZING!!! Not many neurologists would say go to your acupuncturist. I remember the days when they wouldn't dare send you to a chiropractor. (I kind of wish that was still the case as I have gotten no relief or help the many times I've tried with a chiropractor). Just tell me WHY insurance won't pay for acupuncture? It helps so many people! Granted you have to get a good one that knows what he/she is doing but that's the same with any doctor.

I guess I'm writing this post - although I've gotten off track many times as per usual - to all of those who have "let down" from stress migraine triggers. AND to those who may have it and don't realize. If you are a student, do you find yourself in bad shape after finals? If you are in writing and have to meet a deadline - any business for that matter where you are pushing to meet a deadline - do you find yourself in bad shape after it's over? Everyone, do you find after the holidays you hit rock bottom - or sometimes during because perhaps you pushed to get ready for the holidays with guests, or going places and scheduling and shopping?

The "let down" migraine trigger is often over looked or misread to be caused by something else.

So what do we do about it? Well, let's not say there isn't anything we can do because we can. We cannot obviously keep all triggers from occurring - it can happen at the store if you have multiple chemical sensitivity - you can't see it coming. But, we can try to manage things. We can try to not over achieve to meet a goal - personal or business. What I mean is we can over achieve - but we can manage our time and our goals such that we aren't at a push where we are having to reach down and pull the adrenaline up to push us through only to crash later. We can study on schedule so we don't cram for finals - maybe the migraine still comes but it is more manageable or not as lasting.

We can take control! I have found oddly enough that so many migraineurs are also over-achievers. I have heard comments and have been the person who pushed to be better and better and thought that my bosses would think more highly of me because I worked so hard even through my illness. That I would be rewarded for pushing myself. And I absolutely just as I have heard from others that we want to be the best and that we want our work to be OUTSTANDING. All of that good - but not at the expense of your health. I ended up from OUTSTANDING to on DISABILITY unable to work. Which is so hard.

YOU and I are worth more. We are worth putting our health first. We are worth it! And we will have set-backs and we should not demoralize ourselves for that. A reminder I need often - which my incredible therapist helps me with but also has to remind me of again and again.

Take care of yourself. Look out for signs of the "let down" migraine trigger. And this isn't just migraines - my NCS also acts up with the "let down" from stress (and acts up from stress).

It isn't about having no stress because that is impossible. And it isn't about not trying your best so you don't have a "let down" episode. It's about managing your time, your life, your responsibilities. It's about putting you first.

And it's about not punishing yourself when you get it wrong. We all do. Twelve years as a CPA and every busy season (there are multiple ones during the year - 5 I dealt with) I tried to manage and not push and then did anyway. Sometimes because I managed too well and so I felt badly for others and picked up their slack and pushed anyway. It's great to be a team player. I don't feel bad about that. And I don't feel bad about the work I did. Or when I pushed myself for a presentation that went great and then crashed. I feel bad that that is what put me on disability. I couldn't maintain because that was my job as I became an expert. So I did great but I was always stress migraine or relapse "let down" migraine and once I was transcendent chronic migraine always in pain the increase made it impossible. So, I am on disability. I am going to now though be able to focus and learn and manage and learn to manage and as I get better at it - even still in pain - I hope to get back to work, however and whatever that may look like.

The "let down" migraine trigger - you don't see it coming or forget it's coming until it's too late. I got hit just from getting good news that relaxed me. How do you manage that? Not get good news? No, you move on which seemed impossible during those 5 days but even in a lot of pain now, I see, there is light.

So, what do you think about the "let down" migraine trigger? Do you have it? Did you not realize it until much later or perhaps until reading this and looking back? What about non-migraineurs - do you have "let down" trigger that relapses your chronic illness? What do you do about it? I think the thing is being proactive, but it's too late a lot of time so what do you do if it's too late? What about when you realize you've overdone it and it will come because of it - is there anything you do to lessen or abate it?

As always - I wish you all the best and I hope I've brought some light onto an issue.

Wishing you the best health and the best of the best!

Elizabeth

Pain Pain go away, come again another day - oh wait - don't

2010-11-01T00:00:00.000-05:00

Short post as an update. Pain is still really bad. Tremor is doing - well about the same - but not worse.

I'm just tired of being in pain and I feel lonely. I feel like people are pulling away from me, but in reality they are just living their lives and I am not functional enough to be out there and involved.

A friend told me not to take things so personally, but it's hard when you feel alone and yes, I know my friends/family are thinking about me, but I want to be involved! I want company! I miss my life!

So I go day by day...

But, although I know I have anxiety disorder, I have total reason to be anxious right now.

My short term disability is over Nov 1st unless it is extended and runs out Nov. 15th. I've provided all paperwork as have my doctors but I have no answer yet on extension or on approval of long term disability.

I'm praying tomorrow will bring answers because how much longer can I wait to hear? I thought I would have heard last week!

I am told to relax and trust that everything will be okay - but I like control - some semblance of it! And I am totally out of control without this knowledge - I can't budget or anything! Hard to do meditation and yoga right now. I feel like it will all be okay but without knowing and it out of my control it is very difficult.

Pain got worse after my annual woman exam and then a little better and now stress seems to be making it unbearable!

I wish I could go back to work and then know money was coming in and health insurance covered, but I am simply too disabled to work - I couldn't if I pulled all my strength together.

I have to trust and have faith. As hard as it is to do right now.

Thank heaven for my husband although he's pretty stressed right now too. But he is so good to me.

Faith we will make it through. Dear Lord, please let me hear what's what tomorrow!

Hope this finds you all well - Best Wishes

Elizabeth

Narcolepsy and Chronic Migraine

2010-10-22T15:43:00.000-05:00

I went to see my sleep doctor the other day as I do every six months to keep up on things.

I was referred to her from my neurologist for having sleep issues - one keeping me from having a good night's sleep - my neurologist thought it might be a contributor, never getting a good night's sleep, to my chronic intractable migraines.

I had no idea - this was almost 2 years ago. I thought she was right that I didn't get good night's sleep but I thought was due to two things: 1) being in pain even while I slept; and 2) one thing I had experienced most of my adult life - "sleep paralysis with hallucinations" - I called them night terrors but have been corrected as night terrors are a different phenomenon.

Apparently, night terrors are not something the patient remembers and occur in deep sleep.

Sleep paralysis with hallucinations on the other hand (SPH I'll call it) can occur to anyone at any stage in their life but generally don't stay or reoccur often. I had been having them nightly or almost nightly for years. I would go sometimes weeks without them but they came back and would stay night after night keeping me from sleep.

SPH - basically occurs when you become conscious during REM sleep. See, your body puts itself into a kind of comatose state during REM to keep you from acting out your dreams - running, etc). So, when you become conscious (not what I knew was happening) you can't move and you have a terrified feeling. You know you are in bed and what's around you but you can't move and start struggling to wake up. With hallucinations, I can only describe my own, I would sense a presence, hear someone opening the door and coming in and toward me while I struggled to scream or move and couldn't, or a lot I would see a figure at the bottom of my bed and then moving toward me - coming at me - and I would struggle to scream or move and couldn't and was terrified. I have had someone tell me they have seen two figures before so could be different. It's a faceless figure and it is terrifying. I would fight and fight to wake up and scream and eventually would get a little scream out and finally "wake up" and scream - alarming my husband as I bounded up to sit up. I would be terrified, lie back down and go straight back into the same thing - over and over and over again for sometimes hours before I slept.

Sometimes I would only think I had woken up and laid back down when I hadn't and it would start all over again - or pick up where it left off. Needless to say - terrifying and then I would just try to stay awake.

As I said, this can happen to anyone. But when I explained my chronic pain and these events when I slept - or tried to - my sleep doctor - who had worked for five years at the Michigan Head & Neurological Institute where I had been hospitalized so she knew those doctors and a lot about migraines - she said she thought it could be something else - Narcolepsy. What? I thought there is no way I have another disorder. She talked to me about that it may be true I am having trouble with the migraines because I don't get a good night's sleep - more to the point that I wasn't getting enough deep sleep. But the only way to truly diagnose Narcolepsy is through a sleep study in the hospital. I had other symptoms, excessively tired during the day, more of a night owl, confusion and I would fall asleep when I didn't plan to when I thought I was staying awake - which annoyed my husband. But I did not fall asleep in my soup or while driving, etc. It wasn't like the movies - and she said rarely is. Some of that and other is called cataplexy - so I was diagnosed after the sleep study with Narcolepsy without Cataplexy which is just as common as Narcolepsy with Cataplexy. They actually couldn't determine if I had cataplexy unless an event occurred. Ruling out my NCS as Cataplexy episodes.

The sleep study in the hospital was no fun as you are hooked up to all these wires and told when to sleep and when to be awake and when to take naps, etc. I thought, I will never be able to sleep like this! But I did, and they recorded all my data. ONE of the primary ways to diagnose Narcolepsy is that you spend most of your sleep in REM and hardly any in deep sleep - causing the being tired during the day - and the wires and all record what state you are in. The other is how long once you fall asleep it takes you to go into REM.

Apparently the average person goes into REM sleep after about 90 minutes of sleep and then into REM again shortly before waking. Having vivid dreams which I have always had - always felt like I dreamed all night - I thought that was normal - but other things also can cause this. I didn't know that you really don't spend all that much time in REM. Except for Narcolepsy - and me. During the test I spent almost all night in REM and every time I came out of it and into deep sleep - the restful sleep - I would jump back out of it and back into REM.

As I said, narcolepsy is diagnosed also on how long it takes you to fall into REM. In my test - I went into REM within 5 minutes of falling asleep all except twice in which it was still less than 10 minutes. That's a diagnosis.

When I did research on the subject myself and the information packet they gave me I could tell that even though I had migraines, before my chronic non-stop migraine, I had these symptoms. I just never added them up? I thought I was tired because I was a single mom, working, going to school, then working 60+ hours a week and trying to take care of my kids and life, etc, etc, etc. I thought the SPH - which I called night terrors were just a fact of my life because I had had a hard time as a child and it was a scar following me around.

As we waited for the diagnosis I told my husband there was NO way I had narcolepsy - he disagreed and said he thought I did. He had teased me about it often but that was teasing. Turns out, I have narcolepsy.

There isn't anything they can do to stop the sleep cycle or force me to go into and stay in deep restful sleep. The medication though has stopped the sleep paralysis with hallucinations - except one time I forgot to take my second pill and it happened again for two nights and when I was on a lower dosage it was happening according to my husband as he woke me up from screaming but I didn't remember it.

I still have vivid dreams but am so relieved to not be scared to go to sleep. I am still tired all the time, fall asleep when I don't mean to, etc.

This is the best we can do right now. They have suggested a medication that only one pharamacy in the US has - it's that regulated - but I have said no and my neurologist says no also. Due to my past, etc. It would keep me asleep - maybe - but I wouldn't have any control - the street name is GHB but of course this prescription would not have most of the bad side effects of a street made drug. But, it is possible if I am woken up I could do anything and not have memory. That is terrifying to me.

I know there is a medication on the market and I was prescribed but never took that is similar and I have friends that have taken it and found that they woke up and ate or other things and had no memory of it. This is different than that in some way as that is available in all pharmacies.

So, one thing is good that I don't have the SPH - what I called night terrors anymore if I stick to my medication. I still don't get enough restful deep sleep which absolutely contributes to my migraines and not being able to get a break away from the pain even while I'm asleep. I am on disability now, so my sleep doctor suggested I take scheduled naps and go ahead and stay awake when I need to at night - basically - sleep when your body wants to.

Makes sense. Sometimes I can't sleep because of how bad the migraine is but then I will feel like I lost time and find that I did go to sleep for awhile. I'm tired but meditation helps that a lot. Really a lot, when I can do well. I have had trouble lately getting into a good meditative state due to the constant ringing in my ears and migraine and a couple times I have accidentally fallen asleep - narcolepsy. But, when I do which is several times a week - have a good meditation and get into a good meditative state - when I have the time and no interruptions to take all the time I need - I feel rested and I can relax and then I can do a great yoga stretch as my muscles need it so badly. They are so tight from the pain and without the meditation the stretch doesn't work because the pain is keeping the muscle bound and tight.

So, I guess I wanted to talk about my narcolepsy and give some support for others in that state. Express my fear of sleep due to the "night terrors" which are not night terrors. And show how multiple chronic illnesses can compound on each other. Because of my narcolepsy I have more trouble with my chronic intractable migraine. The pain, constant pain, that I tend to put first and foremost - because it screams the loudest. Especially now that I'm not screaming in my sleep :)

Best wishes to all and take care of yourselves!

Essential Tremor and Chronic Migraines

2010-10-15T21:34:00.000-05:00

Today I would like to talk about my Essential Tremor and chronic intractable migraine. I have to input the migraine in there because it infiltrates everything as I have had the constant migraine for so long now. It is hard to remember not being in pain. I relish the days of getting 3-5 day migraines even twice or three times a month. I wake with it, I sleep with it, it is always with me. For a little while I had the pain management down so that even though it was constant it wasn't disabling completely but not now. And it along with my anxiety disorder seem to have kick started into high gear my Essential Tremor which is now disabling.

I was diagnosed with Essential Tremor or Familial Tremor about 15 years ago - maybe longer but I think that's about right. My tremors started long before but I didn't get diagnosed until it became a problem. Oh, how I thought it was a problem then? Being that it is so much worse now, I long for those days.

My mom has a tremor too as well as my husband. Not bad, like mine was in the beginning. And it could be that was all there would be for me as well. Essential Tremor doesn't always progress or may progress so slowly that you are much older when it becomes a problem. I thought since my mom's still wasn't that bad that mine also wouldn't get worse.

Let me back up. I put a link in for the International Essential Tremor Foundation - a non-profit organization that has a lot of information about what it is, etc. In the start my hands would tremble when I was trying to do something or if I wasn't paying attention but a small tremble. I thought it was weird but if I concentrated I could get them to stop. I practiced painting small figurines - something very precise - as an exercise to control the tremor. Sometimes I would hold the small paint brush and as I got close to the figurine my hand would start to shake and I would have to stop and concentrate and maybe hold the hand with the other hand and then work to paint my figurine.

Then, it got worse - I wasn't able to paint small figurines but it still wasn't too bad. But, it did cause me embarrassment at times. If I was putting on mascara then I found that my hand holding the tube was shaking badly and uncontrollably - like because I wasn't paying attention to it I thought. Embarrassing was when the same/similar thing would happen at work when I would go into my bosses office or another director or even colleagues office with papers in one hand and then start talking about something and not paying attention to that hand it would shake and the papers couldn't lie that it was happening - it was noticeable. So then maybe only when I'm holding objects I thought and not paying attention to that hand.

Then, it was happening other times and places - embarrassing. I taught a lot for my national firm classes with people from all over the country in our firm. The subjects were sometimes basic - a class for first or second year CPAs on completing basic returns - and sometimes very technical - higher level CPAs and in depth technical tax topics as my specialty is. It didn't seem to matter. At this point I had been diagnosed. I knew my hands may and probably would shake because they did that - it wasn't under my control. I would try to always hold tight to a bottle of water and not papers. I had to hold the remote for the slides - although I was always happy when it didn't work and I would have to go to the computer to move forward the slides. I didn't have to hold notes in my hand because thankfully I seemed to have a gift for talking and when I used detailed notes it didn't feel right for me - I was better on the whim and I knew my subject and I could recall real life examples - new ones each time so it didn't get dry.

Then I found one time teaching a few students watching my hands - yes they were shaking - but it was a distraction - generally this is lower level classes but still. I needed them to focus on the material and my words and not look at my hands OR think I was nervous which would lose their confidence in me.

So, I began starting classes with my introduction telling them that I was not cold nor nervous, I simply had a tremor that was genetic and no big deal and would happen and not to focus on it. It was a great help! I found people stopped looking and wondering and paying attention! It only took a sentence at the beginning and no long explanation. I remember one time part way through another teacher/organizer who had come in to the class room to listen asked in the middle of my presentation if I wanted the laser pointer and I said oh, no with the way I shake the students wouldn't know what I was trying to point at and better I go to the screen and touch it (something like that) and there was a laugh and then we moved on. I was so happy.

I love to teach. The tremors got worse and I never knew when I migraine would happen. Or better to explain after I had the chronic constant migraine but low enough pain (or enough adrenaline because I loved teaching) I could still teach classes, but now I had to have sunglasses and be wary of students wearing a scent that could send me reeling! I thought and was right, what worked before would work now. I started off with the tremor sentence as before and then without going into "I have constant migraines" I just simply stated that I was prone to migraines and had light and smell sensitivity and that I would try to teach the class without my sunglasses on if we could lower the lights but even so, please be patient with me if I need to put them on. Again, worked great. Although NOW, during times classes were working on problems or during breaks especially someone would want to talk to me about my migraines and since these were students and worked for my company I didn't feel comfortable revealing all. Of course some would want to say I have them too sometimes and a lot would want to say "have you tried..." This was off topic and something I am very sensitive too since I have tried it - whatever it is - I haven't had anyone come up with an idea I haven't tried so it gets tiresome and aggravating and I can't express that in this situation. So, as politely as I could I would weave my way through these conversations using distraction mostly to change the subject.

Okay so if it's happening teaching of course it is happening everywhere - client meetings! And needing sunglasses at client meetings. I tried the same thing as I did with classes - just say it quick and move on. Here I am, a tax manager with high technical expertise working with clients on international tax/business transactions and other high technical matters. I was mostly a consultants for colleagues' clients as my area was so technical based and brought in when their clients had issues - some of which meant my involvement for months or multiple times during the year and/or annually for a certain area so even if not my clients, I got to know them well. Which worked out well when my disability due to migraines got so bad that I needed to reduce my personal client load and work from home, etc. Being a consultant for colleagues worked great.

It worked the same with clients as with teaching - clients were able to quickly move on and take me seriously and not think I was nervous from tremors or weird for sunglasses and we didn't focus or spend time on it and got down to business. A lot of clients would automatically turn off or down the lights in the conference room when I was coming so I could have my sunglasses off and handy and not a word needed. Now, clients that got to know me did often ask how I was doing, but I kept it short and we moved on. Staff of clients - rather than the CFO or similar positions - on a smaller scale but when worked with me over a period of time did also want to offer suggestions and the like or send me emails asking how I was doing. I was able to handle.

Then to my surprise I received a review from my Team Leader and our Head of Tax Department (I worked closely with my Team Leader as my supervisor and someone I worked with often and who honestly I think had some problems with me personally because I wasn't the person I used to be working 80 hour weeks and always on call since I had a few months earlier put in official (I had done unofficial but I thought was official requests) requests for special accommodations for my disabilities - only working 40 hours a week, working primarily from home, etc. Well, they sat me down and told me that it was inappropriate for me to tell clients that I had any disability. I asked well, isn't it better than them thinking I'm shaking because I'm nervous or that I'm wearing sunglasses because I'm "shady?" They didn't care, they said I shouldn't tell anyone. Oddly both of them had been present separately but on numerous occasions at client meetings where I did this and then we drove back to the office together and never once had they said then it was a problem - I just got praise. I still have no idea where this review came from or why. I can make assumptions or judgments but without knowing what goes on inside the head of someone else and without them telling you - you can't know. I asked why they never mentioned it when they heard me do it numerous times before and I just got change of subject that it wasn't professional and that clients had complained. I asked which clients but they wouldn't say - none of the clients ever acted that way toward me but perhaps someone felt uncomfortable and said something.

The same they said for my dealings with staff members - well I can't hide that I keep my lights off in my office and all the staff saw me go through the change and the doctor visits and all that - I only got questions and caring remarks. Whatever. But then also they said when having conference calls with clients or even working back and forth with clients on an issue and phone calls and emails that I shouldn't be telling them that I work from home. Well, I never thought that would be a problem. I simply told clients I worked primarily from home so they would know to call me on my cell if they wanted to get a hold of me. I didn't say why I worked primarily from home - although some may have deduced. I was being reprimanded for saying I was working from home? I was supposed to lie and say I was in the office? Still don't know.

Anyway, back to the issue and away from that drama my chronic pain and anxiety problems kick started my tremors much further. Into my hands wildly and uncontrollably and added jerking, into my arms, into my legs at times - generally driving or standing and nervous - and it is bad.

Now, I can't eat a sandwich because I shake all the food out of it and have to set it down and put everything back in and try again. But then eat with a fork and then my hand will shake so bad uncontrollably against the plate that my husband says I may shatter it. I have to carry drinks with two hands and have a lid and straw or not fill a cup so I don't splash it everywhere. Shaving is my legs is hazardous to say the least. Trimming fingernails and toenails is a joke. Seeing me put on makeup looks ridiculous as I lean my arms against things to steady them to do things. Jewelry - bracelets I figured out although it takes some time I can hold one arm against the wall and the other somewhat if I am in a corner and I can get it done. Earrings I try to keep simple and it takes a long time if there is a separate backing. Brushing my teeth - again funny looking as I try to steady things. Contact lenses - I may have to stop - I wear 30 day/night contacts which I tend to wear longer than a month but I have good eyes and no problems - yes hard to get in sometimes with shaking - takes time - BUT the last time I took them out it was too long and I jabbed myself in the eye with my hand jerking that it was ridiculous and I'm nervous about putting back in. I usually go a couple months contacts then a couple months glasses - if my tremors don't get under control, contacts are history so I don't damage my eyes. Oh, so many other activities I could tell you about but you get the picture.

So, then there is the public, as I said, it's bad now, really bad and I can't control it. I am on short term disability and was when it got this bad so no client issues but when I go to a store and I'm shaking so bad it isn't my imagination that many people look at me like a junkie. I already don't look great with losing my hair from my hypothyroidism, sunglasses inside and maybe a hat due to migraine pain and I look weary - pain does that to you. Then, I'm shaking and I see it in their eyes. I say I have a tremor like Katherine Hepburn and it's no big deal, but apparently there are a lot of people that don't remember her - young generation - and they take a step back/sideways glance and I can see they still think junkie. I try to explain further but with my constant pain the more I talk sometimes the less sense I make and it makes it worse. I hate that so much.

But I had a good experience the other day. My husband was at work and I had to go to get something copied and faxed and something expressed mailed. So, off I went - I thought maybe I can do the copy and fax machine myself but my hands and arms said NO. So, I mustered my courage and went to the clerk and said "I have a disability and I know you have self serve but I can't use them and here's what I need." I explained no further what my disability/disabilities were or anything else. And the clerk saw me shaking uncontrollably as I tried to hand her the papers and she saw me need to sit down and cover my head but she didn't ask and she helped me! Then, the post office - I had courage now, although I also had severe pain now since I had been out doing things for over an hour - too long. But, I knew that the express mail label needed to be filled out there and the papers put in the envelope. I waited in line and went when called and said "I have a disability and I need help - can you put this in the envelope and then fill out the express mail card for me please? I know I should generally but I am not able." I said nothing else and she also helped me without hesitation or further questioning. And neither asked me to tell them more or anything. It felt great although I did have to come home and take medication and rest for hours to be able to move again - first thing Meditation as soon as I was able to concentrate again. Then yoga stretching and more rest.

I hate that two small errands takes everything out of me and more but the great news is I succeeded and I got help and maybe other customers looked at me strangely but I don't know, I didn't pay attention to that because the clerk was helping me and didn't do so. It was such a success and such a lesson for me.

My neurologist says that it is the anxiety more than the constant pain that kick started my Essential Tremor to accelerate. I think pain too - because I have anxiety about pain and fear of pain. Anyway, I did some research and it showed that anxiety can be a cause of an Essential Tremor accelerating to next level. Bad news is it also said that once accelerated it is hard to stop and very unlikely to reverse. Bad for me that one of the next levels could be head and neck tremors which my migraine would not handle well as head movement of any kind causes a lot of pain. I have to be careful and always slowly move my head. If I turn my head at a noise - sharp increase in migraine pain. So I do not want an uncontrollable tremor to end up there.

I think that's why my neurologist the last two visits has been intent on focusing on the tremor with the migraine. Now, there are medications I've tried before for Essential Tremor - propanolol (sp) and others but they all lower your blood pressure. Well, here's where my NCS comes in - I have low low blood pressure normally and lowering it causes NCS episodes - fainting, etc. So, those are bad.

My neurologist is working on medications that both show promise with migraine pain and with tremors. They don't want it worse. The first one didn't work for more than one reason and the second I am now on takes like a month to ramp up on so I'm still not yet on the full dose. But, I have noticed that for a little while after I take it the tremor isn't as bad but then comes back. I take three times a day but not at first and as I said not fully ramped up on full dosage. I still have all the problems I had before but I do see a time after I take the medication that it seems less and that it gets worse when I get more active or more nervous/anxious about something. So, I am hopeful. I don't expect it to reverse my tremors from the level it is at now, just hopefully keep it from advancing any further and my neurologist plan as well.

So, there's some information, some personal stories, some bad news and some good news.

For those with Essential Tremor or with a tremor that you haven't had diagnosed, as I said there is a link attached. But you should see a doctor. Some tremors are due to medications or may be another type of Tremor diagnostically.

Even if you have a tremor due to medication - I hope this entry gives you some feeling that you are not alone.

As always I hope you are all well and find something in here that you can relate to and that you know you are not alone. Chronic illnesses and disabilities are difficult to live with but we can do it and we can find hope and friends and support.

Take care of yourselves,

Elizabeth

Multiple Chronic Illnesses

2010-09-24T11:34:00.000-05:00

As you may have seen I have changed the name of my blog and the info about myself. I had originally started this blog to talk about my chronic intractable migraines. But, I noticed that through my blogs my other chronic conditions interfere/interact/co-exist and shouldn't be denied.

Rather than simply referring to them all the time I need to give them the credit they deserve.

I was writing a post - that I have not published yet - and in doing so started some research on another of my chronic illnesses. I have been in so much pain for so long due to the non-stop migraine that I saw everything - even those illnesses that I had been diagnosed with previously - through the haze of the chronic migraine. I then took the time to start research on each of my chronic illnesses. I didn't come up with anything that doctor's hadn't told me but I also was lately the last few years also only hearing them through the fog of the chronic migraine. Somehow I had convinced myself if I fixed the one the others wouldn't be a problem.

In doing the research freeing my mind I found I cried and found that I came out of the haze and the fog and saw my illnesses for what they are. A part of me, and even if a magical cure which doesn't exist for my migraines came about, I would still have to live with these illnesses and their disabilities and I needed to recognize that.

Although it is sad it is also empowering. I have become stronger for it.

I live with Hypothyroidism - those of you living with it understand how hard it is and I did keep it separate as something I had to deal with. Every time you think you have it under control, it goes out of whack again. Yes, that is partially due to the interaction with my being in chronic pain. But, I have to live with the hair loss, the bouncing of symptoms when my levels go up or down with the thyroid hormone substitute and with how all interacts with my sleep cycle with pain, with other medications, etc.

I live with Anxiety - I have all my life. It causes the pain to get worse, it causes other conditions, like my Essential Tremor, to get worse. It interrupts and interferes with my life.

I live with Chronic Intractable Migraines - I have had migraines all my life - you can read the blog - and they got more and more often but always lasted 3-5 days or longer. It got to where I had them 3-5 times a month and it was extremely interfering with my life. Well, I thought that was bad. In January 2008, I got a migraine and it didn't go away in 3 days, in 5 days, in 2 weeks, in fact it is still here - it is here when I sleep, when I awake, when I try to rest, always I live with it and good days are still very bad pain.

I live with NCS - a type of Dysautonomia - it is also called vasovagal syncope. Technical term is Neurocardiogenic Syncope. It causes fainting episodes during which I have "seizure like" movements. But in research I found it affects me even when I am not having an episode. See my post from August 2009 on my top 5 most embarrassing fainting episodes as I tried to bring some humor. People that have seen it - like my husband while we were still dating - see it as extremely scary.

I live with Narcolepsy w/o cataplexy - it is so hard to describe because people automatically think of the amusing Hollywood interpretation - but it isn't like that and it is an invisible illness and people think you are find and can't understand what's wrong with you. Thankfully I had the sleep study that confirmed my symptoms and gave me a diagnosis.

I have Essential Tremor - some people call it familial tremor since it is hereditary. You may be able to go through most of your life with minor hand tremors that don't interfere with your life. For me, the chronic pain and the anxiety have kicked it into high gear. Although it was getting bad before that - I recognize that now. I thought that because my mother has tremors but they still aren't that bad that it would be a long long time before it became a problem for me. My Essential Tremor is now of great concern to my doctor's as it has kicked into high gear. It is embarrassing as people (strangers) look at me as if I am a junkie or something; sometimes my legs shake too much to drive. Writing is almost impossible now. But, the joke is trying to take out contacts or trim fingernails or eat a sandwich! I can talk more about that later.

I live with Tinnitus - a constant ringing in the ears. It started as a precursor to migraine attacks - like a warning - but when my constant migraine came so did the Tinnitus start and never end. This may seem small but for those who live with it you feel like you are going crazy - let alone it being hard to hear others, not being able to stand the silence because the ringing is all there is, and other things.

I have low blood pressure - which apparently is common with a lot of people, but not all, with chronic migraines. Generally, I run around 101/72 - not bad - but is a problem because medicines for my Essential Tremor and other illnesses lower my blood pressure so I can't take them. And pain and anxiety lower it further - I was at the doctor on Tuesday and it was 82/60 - well what can I do about that. Be happy that I don't have high blood pressure, YES, but not be able to take certain medications and feel faint a lot - not good.

Lately - over the last 8 months about - I have started dropping weight significantly. I have rarely been overweight - pregnancy (I gained 80 pounds with my first and 60 with my second); and after having been put on high doses of steroids in the summer of 2008 I gained a lot of weight. But, now I keep losing. I was happy when I was back to where I was before the steroids, but it kept going and keeps going. So, we have to be careful with medications that may cause me to lose weight or be more nauseous than the migraines may already make me.

I do not think I have multiple chemical sensitivity but with my chronic migraines I am extremely sensitive - I cannot know when a smell will hit me unexpectedly in a store or wherever and my pain spikes so quick I go into a faint.

I plan to write blogs on each of these but the real truth is that every blog about any of them is affected by one or more of the others.

More later - much love and take care,

Elizabeth

Migraine, Migraine, Migraine - and Familial Tremors

2010-08-28T15:42:00.000-05:00

Okay - so I have suffered from migraines almost my entire life. So what I think at this point. I have suffered from non-stop constant migraine with no let up since January 2008. Oh, I take that back. I did have a let up after my visit to the Michigan Head Pain & Neurological Institute where I was hospitalized for three weeks after having been hospitalized here and gone through so many other treatments here. Thank goodness my neurologist knows and works with them at MHNI.

But, the pain came back when I went back to work and dealt with that and was back in my normal life. As normal as could be. Now I live with constant pain at a high level - usually average daily 7-71/2 on a 10 scale with spikes up every day to 9 or above at times and when I take my medications the pain can get down to as low as a 5 or 6. But that's it. That's what I live with. I have been once again placed on short term disability and have been since May and am not seeing improvement.

I think I have gotten used to some of my medications and my doctor is making some changes to see if that helps. I'm not your normal even chronic migraine sufferer - like who is? - I can't take any normal migraine medications - the triptans - because I have vaso-spasms and they worry about stroke. They also worry that the longer I am in constant pain the chance of stoke goes up.

I also am hypothyroid severely and so I have to manage my thyroid with my migraine medications. I also have narcolepsy without cataplexy - meaning I don't nod off unexpectedly like they show in funny movies - which it isn't - but I have trouble - hah trouble, I don't reach deep sleep very often. I go straight to REM and stay there and awake and have what I used to call night terrors but actually is called "sleep paralysis with hallucinations" and is common with narcolepsy and can happen occasionally to anyone but was happening to me a lot. Basically your body puts you into a paralytic state when you are in REM sleep so you do not act out your dreams - good - bad when you become conscious during REM and then also have hallucinations and feel like you can't move or wake up - because you can't - and it is extremely scary. Too much on that one - the medication they gave me has helped tremendously with that. I also have NCS which is a type of vasovagal syncope. I pass out at unusual and bad times - see my post of most embarrassing fainting episodes.

If that isn't enough, my blood pressure runs very low normally. Apparently it is more common with migraine patients than I had thought. Anyhow, my other condition is a familial tremor. Not a big deal it was when I had a slight tremor in my hands that got worse now and again and was told that would get worse and move into my arms, legs and neck and head as I got older. I thought, Kathryn Hepburn rocks so no big deal and my mom has tremors and it's still just in her hands.

Well, the constant migraine pain kicked it into high gear. I shake so bad now that the doctors and my husband and grown sons don't want me driving because it shows up in my legs while I'm driving. I still drive to the doctor but everyone's at work so I have to. The tremor gets to where I can't control it at all and I shake all the food off my fork or out of my sandwich before I can get it to my mouth. Then, so bad I can't get my contacts out because the tremor decides to also become a jerk and I keep poking myself in the eye. I have to have people fill out paperwork for me because I can't write. And I have a hard time reading when I shake the book or paper and if I don't then the migraine causes a twitch in my eye - minor - but enough to cause major pain. The computer is better because I can make the words bigger. I miss reading.

I miss not feeling like a freak and I miss not being a part of the world - contributing like I used to. Now, I have to pat myself on the back for very small achievements. And that's okay. I am here and I will be okay. I will survive. I hate feeling like I wonder what others are thinking when they see me and I can't give my medical history to everyone that sees me because then they think I'm more of a freak.

And then I hate that the people close to me that care about me and understand go through periods where they don't understand and are tired of me. Not of me but they miss the real me - the old me - and want me better. I do too - but I can't force that to happen. I tried. It put me back on disability and with the knowledge that when it's medical - no matter how many other obstacles you've overcome in your life - you have to let go and meditate and relax and not push and force your way out of this one. It tends to make migraines worse.

That's all for now - been awhile since I wrote - I'm going to try to do so a lot more often. I'm looking forward to invisible illness awareness week and the free conference - see link - week of September 13th. Last year's I got a lot out of.

Love to all and take care of yourselves.

Why am I still awake?

2010-06-08T06:11:00.000-05:00

So, it's 5:10 am and I have been awake all day and all night. Not for work since I've been put on short term disability to rest and rest and rest.

I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions.

Thus making it difficult to fall asleep.

I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it. Why? Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up. So, I will hold off until after the appointment and then get some rest.

Of course, that means I likely will be up tomorrow night - or tonight I guess.

I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping. Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.

This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall. His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place. Very proud mama and so glad I got to go to the meet and watch them.

They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz. Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day. So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s

They eat army meals from in the field in between competitions when they have time. My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes. It was the first time they had won the 10K in a while.

At the end there is an awards ceremony where all the teams are their army best at attention. It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job.

I am talking about a grueling day of pushing themselves to the limit. Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks! These are high school kids going through this. You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)

So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability?

Because it is a marathon and then some. Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc. And then after that more obstacles and we are pushing and fighting to make our way through.

I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -

But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going. I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.

Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.

I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.

And that's what we do everyday.

So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest. It takes rest too. To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.

So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.

And here's to my son of whom I am so proud! And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.

Love all!
Elizabeth

Been Gone So Long - The Migraine Story Continues

2010-05-14T23:23:00.000-05:00

Well, I apologize for being gone so long. I am a CPA and it was tax season. Per doctor's orders I was only to work 40-45 hours/week but then I got some reprimand that made me fairly sure that my job was at stake if I didn't "step it up" so I ended up working 75 hour weeks and my migraine is very angry about that.

This week my doctor put me on short term disability to try to get the rest I need to try to get back under control. So far, the pain hasn't let up and I am not doing well.

I know logically and truly that things will work out and I will get better and find my way. However, I am pretty depressed and angry at myself for not being able to overcome this obstacle - this migraine.

I have had SO MANY obstacles in life so far, and I have overcome them all or hurdled them and become successful. I have had this migraine since January 2008! and I have worked SO hard to overcome, to live with it, to be able to manage it, to hurdle it. I've had migraines almost my whole life and was having them up to 5 times a month - 3-4 days in a row, and I hurdled that. In 2008 I realized that I was going to have to adjust my definition of success and back down for my health now that my migraines had become a disability.

Without having worked, I took a shower and couldn't even get to shaving my legs before it was too painful, I got out and laid down and then got up and then fainted - my NCS - and then laid there for 1/2 an hour, and then got up and it hit me again - took me over an hour to recover from a short shower. It was the same while working so I guess I'm not rested enough yet. This is a true disability and this is just one example of how my disability has disrupted my life. When it takes more than 5 spoons just to shower!

It has gotten worse and worse and now I am finding I can't overcome this and I can't hurdle this. The migraine disability is winning and I am SO mad at myself for this. I feel like a failure. I know I am not and my doctors have told me that they are so proud of me and how hard I have fought. But, that I need to rest and let go and stop fighting so hard. I know that things will work out but for a little while I need to be depressed.

I need to be able to mourn the loss of my dreams, even my watered down dreams. I will make new ones and I will survive and be successful in another way, a new definition. I will be okay. But, please give me time to mourn.

To everyone out there in my situation and those in similar situations or facing trials of your own. Be strong, know that "This Too Shall Pass" and keep dreaming. But, also give yourself time to mourn and to feel your feelings - just don't let it go too long so you can pick yourself back up.

I'll pick myself up and will be strong, after my mourning period.

Love and good luck to all - more later and not as long this time!

Getting older

2010-01-30T14:25:00.000-06:00

Doesn't it just bug you when little things remind you that you are getting older? Me too! I am happy thinking of my age as a hypothetical - not something I want to think about and I can just go with what age I feel like. But, when something reminds me of my age and that I'm getting older, then I start thinking about money and if my health problems will get worse, and what other health issues may arise, etc. As well as thinking, I don't want to get older.

Reminder the first recently - my 21 (YES 21) year old son just moved out to his own apartment where I co-signed the lease. Move out? I can't pretend he's younger and so am I if he moves out on his own. Plus I miss him and miss having my baby boy - so long ago that he was 6 and dressed as Batman or 10 in Tai Kwon Do lessons on my old home videos. He's grown up means I'm grown up even more!

Reminder the second recently - my youngest son, my baby, is turning 17 (YES 17) on Monday. Starting college a year and a half from now! I miss my young children. Yes, I know the purpose is for them to grow up and realize their dreams and be independent and I want that for them. But, how did it happen so quickly? It was just yesterday he was 4 and convinced that St. Patrick's day (his name is Patrick) was a holiday that was created just for him and wouldn't be swayed (I folded and bought him a present, I kept explaining that St. Patrick Day was named for a saint, but he responded "yes, I am really good" - gotta give in to that). So, I work on finances for his college tuition coming up and worry if he'll be happy and make good decisions.

Funny story - my 21 year old said when he came back after having been moved out a week that he thought my migraines would improve after he moved out? I never knew he thought he was a factor in that?

So, I am getting older and am budgeting savings, retirement, debt, etc. As a CPA, I am great with a spreadsheet and budgets and actually enjoy working with them - better with someone else's numbers - so not all that bad and I'm in bad shape due to health costs on me but not as bad off as others are so I have to be thankful.

How much longer till I cannot work? Well, last week, my neurologist said that if we don't see improvement then sooner or later they will require I go on disability and reduce my work to half time or less or none. So, that's a worry.

Then, I think maybe age will improve my conditions? Some women after menopause see an improvement in their migraines? But, I know too many who don't. And then, my neuro talks about the white matter building in my brain from constant pain and increased risk of stroke as it continues. Perhaps that means I need to save quicker and be more efficient to retire sooner to lower the risk? Since I can't seem to stop the pain and it's primarily caused by stress.

Then, there's the fact that due to my disability, my career growth has been stunted. I do well where I am but the company won't promote me or grow my career so my income is going to flatten. Change jobs? Change their minds? Possibilities, but I'll worry about that later - just not too much later because the clock is ticking.

One thing I do know, every woman in my life close to me - friends and family - say the 40s are/were the best years of their life. So, I am not going to be afraid of the number. I adore my friends and family and my incredible husband who takes such good care of me - and me of him financially (for now) since he's an artist and I'm the breadwinner.

I hate my pain but I am happy with my life and I want to remember my life and events not being taken over by the pain. That's the task, changing that - since right now the pain is in control.

I still have good times. A great memory from recent is last November seeing 75 year old Leonard Cohen in concert just after our wedding anniversary (one of his songs was our first dance song). Seeing one of the greatest poets and writers of our time perform flawlessly and incredibly and skip off stage for 4 (YES 4) encores. so, I have to say, age doesn't stop everyone. Love you, Leonard Cohen - You are The Man.

I do want to talk more about my IV therapy and other things that I think are going to help, but want to see how they play out first.

Love and hope for pain free days for you as always,

Elizabeth

Awards Season

2010-01-17T02:24:00.000-06:00

So, it's awards season for the movies of 2009. And I am way behind in seeing movies and being ready.

Backup - I love awards season and the awards shows. I know a lot of people don't care for them or think they don't make good picks, etc., but I think they are fun. Especially the Oscars. I don't always agree with their nominations or the choice for winners either, but still love to watch and discuss.

Every year since 2004, my friend and I have hosted an Oscar Party. It is so much fun to get ready for it as well as the party itself. We are both accountants and it's a time to be creative. We make a poster of the nominations in major categories including pictures of actors, directors both in character/job and as normal - it's neat sometimes to see the difference in character pictures vs their actual appearance - and give descriptions, how many times nominated and for what films, etc. We also make a poster board of every movie nominated in every category and give people stickers to mark what movies they've seen - we give a prize to the guest who has seen the most nominated films - some people come thinking they haven't seen many and then realize they've seen a lot more when they count other categories like song, sound, and other technical categories.

Then there's the display, for each movie nominated for best picture we do a food dish that relates to that movie in some way, a picture of the poster for the movie and also other displays/props that relate to the movie. To do this, you have to have seen the movie! This year they will have 10 rather than 5 best picture nominees which will be a huge jump and a lot more work - we've thought about giving certain guests the chance to bring their own food/display for 5 of the nominees so we only have to continue with 5 ourselves. We also do the ballot game, having everyone fill out ballots and then give prizes for most picks right and sometimes a prize for least picks right. I think we are eliminating that one this year because we found some guests were trying to lose and that's a waste of the money we spend on the prizes.

Anyway, my point is that by this time I have already in the fall made a list of movies I think have a chance of nominations and seen as many on the list as they come out and then when the other awards shows nominations come out, adjust my list as necessary and the movies I need to see and have some ideas for props/food/display for what I think may be a best picture nomination.

Due to my migraine disability being so bad lately, I am nowhere - not even step one, nor have I seen very many movies. I love this time of year partly because of what I do to get ready for it and because it causes me to see movies I may have passed up seeing otherwise and then end up being a movie I love so I am so happy that the awards season got me to see the movie - even if it didn't end up with a nomination.

I have seen a few movies that are being talked about, and I need to feel grateful for that. I can't help that going to the movies is more painful than it used to be or causes me to be worse off for a while painwise. I need to be patting myself on the back for what I can do and not beating myself up for what I can't do. Sure, I usually am at the top of the list, if not top, of having seen the most movies (not that I get the award, it goes to a guest) but that just won't be this year and I have to get over it.

I am thankful my son and I saw Avatar on Christmas Eve. It's nominated for a Golden Globe as well as Inglorious Bastards which I saw in September. And Hurt Locker is on InDemand so I can watch here at home. So, I am on my way a little.

I am going to look forward to the awards shows and our Oscar Party and not feel down about my situation being different than other years.

One thing though - we switch every year whose house we have it at and this is my year - have to enlist hubby's help in getting the house ready and really cleaned up for it. Don't have the energy I used to and have to take lots of breaks. But, I know this so I will start earlier than usual and take breaks and ask for help.

Good luck to all the nominees at the Golden Globes tomorrow night (or tonight now - its 2:20 in the am).

I have trouble sleeping with the pain and so my sleep schedule is a bit awry.

I will not let my migraine disability control me and my ability to have this enjoyment!

Best Wishes for a New Year

2010-01-11T22:41:00.000-06:00

Well, it's been a long, long time since my last post - September 2009 - and it is now January 2010. No, I didn't get bored of this or tired of it - I was and still am in a bad way, in a huge slump. I didn't want to post and haven't been using Twitter much either lately because my health, my migraines - the constant, unrelenting pain - has gotten to me.

I try to be upbeat and project positivity, but was unable to for awhile, and maybe still.

I did not want to post depressing or hopeless feeling posts where people would feel sorry for me or feel the need to comfort me. That's not why I started this. I do appreciate all the well wishes and all the comfort that has been offered to me and won't turn it away. But, I started this to write about my feelings about my illness, how it's going and to be upbeat. Sometimes just writing about it helps me to think more positively and that wasn't possible for me for awhile.

Like I said, maybe not yet - but let's see.

The pain has gotten worse - or more correctly - I'm feeling it more and less able to separate myself from it. It's been constant for two years now along with ringing ears and feeling faint and all the other drama. I was able to still see myself through it - like point to "that's me" and "that's the migraine" - but when I look for me lately, I can't see through the pain to me.

Even in looking for words it's like my brain synapses fire off to find the word I want to use and they get stopped by the pain and have to reroute and reroute and reroute to find a way to the other connection - the word. So far, for the most part, eventually I find the word - the synapses connect. But it takes longer and I can feel it's the pain stopping a faster connection.

That's hard, I miss me, my husband misses me, my children somewhat miss me (21 and 17 yr old boys have a lot of other things on their plate), my friends miss me, my family misses me. Even when I'm right there, they can tell I'm not - that it's pain me, no separation.

I hate that so much because before even though the pain was the same and constant I could see me and so could others. I know I'm in here! Now, the pain has increased and my doctors have increased some meds in December to combat that - some medications, adding a magnesium oil to soak through my skin, some straight up IV fluid just to hydrate me, some electrolytes to help hydrate me.

I see my acupuncturist who is incredible. He told me last session as he walked out afterward, "don't worry, I'll never give up on you." So I cried because it was just what I needed to hear - from a medical person. I've heard the same from my neuro but not lately.

Had a suggestion from my narcolepsy sleep doctor and then my neuro that perhaps I try some medication that I refused. It would take the last bit of control away from me. They argued that don't I feel out of control now and I said yes, but not like that would make me feel out of control. Upon telling my neuro some personal info she backed off and completely understood. I'm not mentioning the medication here for two reasons. One, I don't want anyone to suggest I try it anyway and two, I don't want to start a controversial conversation on the subject.

It did make me think more about control. What I've given up and how much I have left and how to hold on to it and make it grow. I still don't know the answers to these questions yet, but it's a good and healthy project. I'll let you know how it goes.

My husband misses me so much he told me he's lonely even though we spend time together - he wants me. He wasn't trying to hurt me even more although I did cry which angered the migraine monster so I did hurt more. He was just needing to express his frustration at my disability.

I do not want to go on disability. I have been allowed a reduced (for my profession as a CPA that's 40-45 hrs a week) work schedule and work almost exclusively from home. I'm a great worker and great at my job but it takes longer, more thought, more patience with me and by me to get it done, then it's still a great product. I work mostly on highly technical research and international tax issues. I am able to do that so much easier from home because I am dealing with being a consultant to the consultants rather than dealing directly with clients for the most part. I work with the clients but am not the client manager so that relieves a lot of burden.

I have to keep working and keep providing for my family. That's the fight my pain and I are having. That's the fight my disability and I are having. I am going to win. As long as I set boundaries, keep the boundaries, respect my disability, continue to get support from work and home, and find myself again.

One quick note on the magnesium oil, it does seem to be helping. I take so many meds for so many conditions and not as many meds as I do supplements and vitamins and the pain is making it hard for my body to absorb it all digestively - the magnesium oil combined with water and sprayed on like a lotion and rubbed in helps get the magnesium and more hydration in through my skin. I will say my mood has improved since starting it and a thank you to my acupuncturist for sending me to buy it.

So, Best Wishes to You All for a Happy New Year and for me to find me again. If you see me let me know.

30 Things About My Invisible Illness You May Not Know

2009-09-12T19:17:00.000-05:00

I suffer from more than one chronic invisible illness - and more than two - but I will focus here on just two: Chronic Intractable Migraines and Hypothyroidism

I'm torn because I also suffer from NCS - vasovagal syncope, a form of Dysautonomia, that also greatly affects my life, but I will leave that to my post on my most embarrassing public fainting episodes, see earlier post on this subject.

Support National Invisible Chronic Illness Week - September 13 - 20

30 Things About My Invisible Illness You May Not Know - Chronic Intractable Migraine
1. The illness I live with is: Chronic Intractable Migraines - constant
2. I was diagnosed with it in the year: migraines technically diagnosed 10 years ago, Chronic Intractable Migraine about a year and a half ago
3. But I had symptoms since: I was in my early teens
4. The biggest adjustment I’ve had to make is: adjusting work environment - I now work from home, lighting, learning to say no and learn and live with my limits - I may have to say no at the last minute.
5. Most people assume: I have a headache or wearing sunglasses because I overdid it
6. The hardest part about mornings are: Waking up and realizing the pain is still there
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My computer
9. The hardest part about nights are: Trying to fall asleep when the pain wants me keep me awake and then taking meds and falling asleep too soon and missing time with my husband. Not getting a good nights rest even when I sleep.
10. Each day I take 23 pills & vitamins. (No comments, please) - plus monthly B12 shots and 2X a week Toradol shots
11. Regarding alternative treatments I: have tried almost everything, acupuncture, migraine massage therapy, homeopathy, physical therapy (multiple), chiropractors (multiple), essential oils and herbs, diet restriction, toxic cleansing, other strange things people suggest to me, sleep doctor and sleep study, therapy
12. If I had to choose between an invisible illness or visible I would choose: invisible so I can act fine and not be asked too many questions if I want to remain unnoticed - although then there is less awareness and more misinformation that floats around
13. Regarding working and career: I have had to cut back my hours, change my environment to suit my illness and abilities - things I can do - work has been supportive with me - I'm a CPA and now do mostly technical research and consulting and international tax planning without the daily grind of deadlines. I have kept some of my deadline clients that are less stressful and mean a lot to me and international clients.
14. People would be surprised to know: That I am in pain 24 hours a day 7 days a week - I don't get a migraine every day - the pain never stops. But, I am able to hide it and excel when I need to for work or family and then crawl back in my cave and huddle up and cry afterwards.
15. The hardest thing to accept about my new reality has been: That I can't do everything I had planned to do and that I can't plan to do things without knowing I may have to back out.
16. Something I never thought I could do with my illness that I did was: Transform my job duties - career - into something I enjoy so much more than what I was doing before - technical research and international consulting and helping others by being a consultant to the consultants.
17. The commercials about my illness: Are Grossly inadequate and make it seem Way to easy to just take a pill and get over it - hence others think I should be able to do that. Way underestimate the debilitating nature of my illness.
18. Something I really miss doing since I was diagnosed is: Going out with friends anytime at the drop of a hat and dancing long into the night!
19. It was really hard to have to give up: My desire to be everything to all people at work and home and mourn the loss and learn to live with my limitations.
20. A new hobby I have taken up since my diagnosis is: Blogging - which has been such a great release for me!
21. If I could have one day of feeling normal again I would: First, beg for more time, then spend the entire day doing things with my husband outside, zoo, museums, parks, shopping, then going out and having a meal and a few drinks and spend time - quality time - together! - If I had more time, we would do these things in London instead of here in KC.
22. My illness has taught me: That I am more than just my illness, and to live life to it's fullest and not waste time feeling down (although I succumb at times but for a short time) about it - look to what I can do and how I can still be a great benefit to my family, job and society. And that insurance is something everyone should have access to and going into debt for illness sucks!
23. Want to know a secret? One thing people say that gets under my skin is: When people say I saw this commercial or ad that says if you try this product it will cure you - have you tried that? Or anything where someone talks about a "cure" because it isn't there.
24. But I love it when people: Tell me they are thinking about me, praying for me or just listen to me and ask if I need anything.
25. My favorite motto, scripture, quote that gets me through tough times is: from my Grandma (although she got it elsewhere) THIS TOO SHALL PASS
26. When someone is diagnosed I’d like to tell them: Find a doctor or better yet group of doctors who will continue to work with you and never give up on you - find support and don't believe it when people say it's just stress and you could get over it if you tried harder.
27. Something that has surprised me about living with an illness is: There are so many stories just like mine - I'm not alone! And I have great doctors who won't give up on me.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband cooks me dinner and calls me to remind me to eat.
29. I’m involved with Invisible Illness Week because: We need more awareness and to get more information for myself and how to deal with my life like this.
30. The fact that you read this list makes me feel: Happy and relieved because you know how I feel.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

30 Things About My Invisible Illness You May Not Know - Hypothyroidism
1. The illness I live with is: Hypothyroidism
2. I was diagnosed with it in the year: I was 23 - so 1994
3. But I had symptoms since: I was a teenager - I was misdiagnosed as depressed for many years because I was thin and didn't fit the profile - took being put into a psych ward where the test was routine and came out so drastic they moved me to another ward to take care of me and it was a teaching hospital so many students came by to look at me - normal TSH level is 1-5 - mine was 450, they said they didn't know how I wasn't in a coma.
4. The biggest adjustment I’ve had to make is: taking a pill everyday, having routine blood screenings and watching out for symptoms that my thyroid has gone haywire again. And that effect on my other illnesses and effectiveness of medications. And my hair thinning and shedding and whispies that look like bangs - like a receding hair line.
5. Most people assume: I'm not hypothyroid because I'm thin.
6. The hardest part about mornings are: Being overly tired and hard to wake up
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: falling asleep when I don't mean to and being cold all the time
10. Each day I take 2 pills & vitamins. (No comments, please) for this illness - see above for items taken for Chronic Intractable Migraines - this is just synthroid and Dulse Liquid
11. Regarding alternative treatments I: have gone to different endocronologists and found many to be arrogant and rude - my GP takes care of my thyroid and has done research and stays up to date to help me and he is very kind.
12. If I had to choose between an invisible illness or visible I would choose: Again, see above, invisible b/c you can hide it when suits your needs for career purposes or family needs
13. Regarding working and career: See above
14. People would be surprised to know: How drastic my hypothyroidism is - most people are diagnosed with TSH levels of around 20 but mine when in trouble never stays that low is from 150 to 280 - except my first diagnosis which was 450. I could die if I wasn't treated.
15. The hardest thing to accept about my new reality has been: dealing with ups and downs of my thyroid and how it affects my other illnesses and medications.
16. Something I never thought I could do with my illness that I did was: Have the career I do
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: I don't know before I was diagnosed, I was really sick and depressed, so I'm happier now.
19. It was really hard to have to give up: Nothing
20. A new hobby I have taken up since my diagnosis is: Nothing other than above
21. If I could have one day of feeling normal again I would: See above
22. My illness has taught me: Our bodies are very fragile and a good doctor is an incredible key to life and happiness - one who understands and listens and is patient.
23. Want to know a secret? One thing people say that gets under my skin is: Why is your hair so thin and Do you have bangs? Most notably - Hair Dressers! No, I have thin hair b/c I can't help it and it all falls out and those are whispies, not bangs.
24. But I love it when people: Compliment me on my hair even though I know it looks bad
25. My favorite motto, scripture, quote that gets me through tough times is: Again, same as above, This Too Shall Pass
26. When someone is diagnosed I’d like to tell them: Research your illness from many sources don't just rely on one or just your doctor, be a part of the discussion on your illness
27. Something that has surprised me about living with an illness is: See above - finding out you aren't alone.
28. The nicest thing someone did for me when I wasn’t feeling well was: See above - just a hug is nice sometimes.
29. I’m involved with Invisible Illness Week because: See above, spread awareness
30. The fact that you read this list makes me feel: Happy and relieved you know more about me.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

I miss my life

2009-09-05T12:39:00.000-05:00

I remember dancing, parties, staying up late. I remember having a life.
I remember a career where there were no barriers to what I could accomplish.
I remember being outside for hours and hours enjoying the day.
I remember concerts and loud bars.

But, my illnesses have always gotten in the way -
I remember migraines on my honeymoon.
I remember sleeping all the time and not being able to stay awake to play enough with my kids when they were little.
I remember fainting at concerts, plays, out with friends.

I miss being able to spend quality time with my husband. We still do but my illnesses get in the way and he worries about how I am or if he is pushing me to far.
I miss traveling - mostly reduced now because of medical bills putting me in debt rather than the illnesses themselves.
I miss having conversations with my friends about love, life, and the world where it doesn't come around to them wanting me to update them on my latest progress or unprogress with my migraines.
I miss having something to say that didn't end up being related to one of my illnesses.

But, I am grateful -
I am grateful for my body forcing me to slow down and start putting myself first.
I am grateful for my doctors who won't give up on me no matter what.
I am grateful, immensely, for my husband who takes such excellent care of me and loves me so much.
I am grateful for my acupuncturist and migraine massage therapist that give me a few hours of relief.
I am grateful that my family is so caring and understanding.
I am grateful that my children, now almost grown, are such incredible and caring people.
I am grateful that my work allows me to work from home and continue my career.
I am grateful for all the friends I have made that have conditions of their own that help me not feel alone.
I am grateful that my friends care enough to ask how I am doing and that they never judge me.

My life has changed, but wouldn't it have anyway as I grew older. Less parties, concerts, etc are bound to happen. Changing relationships with your children are bound to happen. Everyone makes mistakes and wishes something was different about their past or about their lives.

I have been able to do more of the work that I have wanted to do because of my illness changing my career path and gave me the gumption to ask for the job description I have now - with less stress and more research and consulting - more international tax consulting and less day to day the same returns. I love constant learning and becoming better and now a lot of the other monotonous work is out of the way - thanks to my illness and thanks to my doctors who insisted this was the only way I could work - that or disability.

I cherish times when I feel better and am able to do more, go shopping, hang out with friends, etc.

I go through ups and downs where I feel my life is over to where I am grateful for what I have and see benefits to my problems. But, doesn't everyone have their ups and downs?

Three things I want to focus on changing to make my life better -
1) Getting my friends to think of me as more than my migraine and talk to me openly about their problems and talk like we used to. Solution? I've tried to tell them, but they care and want to know and it takes so long to update them, it turns into our entire time. I've tried to not update them and they are hurt by that. Maybe a good solution is a weekly email to all saying this is where I stand right now with my condition, now, you have the info, so when we talk, let's talk about other things. Sounds like a good idea, I'll put it in motion. I still will complain on twitter to my #spoonies to get support there but will also try to be positive and upbeat until I hit a major downspell and even then my friends will get to listen to me complain.
2) Spending more quality time with my husband. Make more of an effort. I have let things slip in our marriage that it's more about taking care of me then a two way street. Now, I am the breadwinner, so I do my share bringing in the $ and that is taking care of him in a way. He's an artist and I'm a CPA so he brings in wonderful things and interesting things and I bring in $. I need to be there for him in other ways. Don't get me wrong I try very hard right now but I can't get him to open up a lot of the time because he worries that we should be focusing on my pain and not his needs - that he'll be fine and doesn't need to talk, etc. Enough of that - I have to be more forceful and despite my pain make efforts to do things with him even if it increases my pain for a time. He has opened up that he sees I can pretend, very well, to clients, work colleagues and friends that my pain is not as bad as it is, but with him I open up. Part of that is that he is my comfort. But, and I don't want to lie, I need to give some of that to him. I'm in pain but we are spending time doing some of the things you want to do and ignoring the pain for a little while. I need to do this daily. I love him and he deserves a wife.
3) Learn to say no and get in control over the stress factors in my life. I seem to like the part of work where things have to get done and done now and it's really important and all that stress. But, I don't like the increase in symptoms or the let down from stress migraines - I have to have control first. I can work on challenging projects and have reduced stress if I take control rather than letting the work take control. I can't take on the stress of my colleagues and let my guilt and wanting to help them and ease them get in the way of my health. I have to put me first. I need to set boundaries and protect them better than I have. I have to feel accomplishment for what I do and be proud of that rather than searching to please everyone more. I do a great job and that's good, great enough. I don't have to be perfect or solve everyone's problems. Every morning I will say to myself "I am in charge of my schedule and I won't take on the stress of my colleagues. I will accept the projects that fit in my schedule reduced as it is by my illness and will not feel like a failure or like I am letting people down. That will only in the end let myself down. I will put myself first - and remember the job I do is not life or death."

I will continually have to come back to my thoughts and re-commit to my plan over and over. I have to accept I will backslide and cannot blame myself for that. I am ill. I will cherish and pat myself on the back for the accomplishments I do make.

I will continue to grieve my old life in some ways and sometimes but I will not let that grieving continue to take a front seat. I will focus on what my life is and will be and the joys and wonders that are to come.

Here's to all of you out there dealing with your own illnesses and problems. We are stronger than we think we are.

Much love,

Elizabeth

Babysitting nephews

2009-08-23T13:39:00.000-05:00

Got to babysit my 2 yr old and 6 mo old nephews this morning. Getting down on the floor and playing is great for migraines. But they are gone now so no migraine quickly spiked back up and I still have a lot of work to do today.

Don't want to put picture of kids out there for the internet, but these you can't see his face - my hubby (a great guitarist) letting nephew play the guitar - so cute!

It's the cheap guitar so he couldn't hurt it that I've had since I was 12 - not one of my husband's many expensive guitars. He asked if he could try playing it with his foot - that answer, although a cheap guitar was still no. His brother - 6 mo old was also so much fun!

Have to get back to work now and back to migraine - need to take a breathing and yoga break for that - but had to share the joy that I spent this morning that although in pain, I didn't care.

I missed it. My boys are 20 and 16 and I miss the days when they were young and we played on the floor and they explored with wonder. Of course, my boys are the greatest gift to me and my heart, soul and joy. But so are nephews!

Later,

Elizabeth

I Must Learn Self Control and Get Back to Me

2009-08-20T02:16:00.005-05:00

As per my last post, things are not going well for me lately with my migraine (I'm done with the s at the end it's just one very long single migraine).

As a tell tale sign that I am taking on too much and not enough time for myself, my migraine pain level has increased and other health problems have arisen.

Migraine has been hovering at 8/10 for awhile now - over a week - I usually get by with a 5 or 6 with daily spikes up higher, but lately it's all full blown.

My thyroid (I'm hypo) has gone out of whack. Although better in the last month.

My sleep problems have returned. I have SPH - Sleep Paralysis with Hallucinations - and had gone 2 months without an episode and they are back bugging me and my husband. They get worse with stress. In addition, had to go back to sleep doctor to get better medicine to keep me from falling asleep randomly - been diagnosed with light narcolepsy without cataplexy.

And another bad one, my NCS (vasovagal syncope) form of dysautonimia has gotten worse. I've had 4 episodes in the last 6 days. Last Thursday night I went out with my hubby because his grandma is ill and he needed me to so despite the pain I went out with friends which was good and fun but we came home and I had an episode. See my blog post on Dysautonomia posted earlier this month regarding my top 5 most embarrassing public fainting episodes. None of the past ones have been completely public nor knock any of those lower on the list. On Sunday to get over my being depressed lately over the pain, I went out to run some errands and nearly fainted at Whole Foods Market (note to self - do NOT go there on a weekend - too busy and crowded). Had to spend time in my car and rest and got back home safely. On Monday night I went in the kitchen to take some of my herbs, etc and ended up spending an hour on the kitchen floor because everytime I tried to get up it hit me again hard and I had to go back down to the ground (The kitchen lights tend to bother migraine but earlier in the evening had visited hubby's grandma in the nursing home and she was not doing well). Then last night, Wednesday, I take a shower and have to sit down in the shower and then finally made it out to lie down on the bathroom floor and towel myself off sitting down. Took awhile to get over and then slept for awhile and now woke up at 2:30 this morning waiting to go back to sleep but can't try to hard or will have SPH episode.

I know the stressers right now, migraine pain increased, health of hubby's grandma, a fight with my 16 year old and dealing with ex husband issues, and work (oh work, as a CPA and 9/15 on the horizon - the corporate extended due date - my work in international consulting iand review of international forms/filings/calculations is through the roof. I have so many projects in the air that I'm getting overwhelmed with it almost to the point of not being able to move. Ever get that? So, overwhelmed that your kind of frozen in place?

The migraine - I have to do more yoga and meditation. I'm doing the meds, the herbs, the acupuncture, the migraine massages, but am not spending enough time with just me and flowing with the pain to ease it. I know consciously I'm not which goes to my previous post of depression and feeling the need to punish myself. I have to slow down and take time for me. @TheDailyHerb RT a great article tonight - http://www.stevenaitchison.co.uk/blog/2009/08/17/9-ways-to-debug-your-mind/ - that really says a lot of what I need to do. I need to step back and evaluate and clear the junk and know myself. I need to meditate and get back to my yoga at the heart of it instead of going through the motions.

Family - Hubby's grandma is in a bad way and although I've gone through this with my own grandparents (2 of them) I see how hard it is on Hubby. and am trying to be there for him and her the best I can. This is a good thing but does add stress. This I won't change. My son and ex issues have to deal with my not trusting my ex and a guilt trip my son put on me about that. It hit me hard. But, as my brother told me, he's 16 and he's supposed to push my buttons to get his way. I have to stand my ground on my decisions on things and not let myself feel the guilt or not take on the guilt. Take it as it is, a 16 year old trying to get his way. My guilt comes from the fact that I am far away from him and miss him and want to give him the best of everything but there are limitations to that. (I have joint custody but he lives with his dad in a town an hour and a half away. Our other son lives with me.) I did not and never have abandoned him and provide for him well financially and emotionally. It isn't my fault he wants something I said no to and I don't have to accept the guilt trip. He's just being 16. And he's a good solid child who is wonderful - as is my other son and I am lucky to have them. These years are just hard until when I don't know - until they finish growing up and come to appreciate me again. It's natural to pull away from parents - that's how we mature - otherwise we'd stay at home forever. I know this intellectually but have allowed myself to feel and take on the guilt. I have to stop that now!

Work - well what can I say, it is that time of year, and I have this innate need to help and please people. I have to say no when it's too much. I took a pay cut last year to work less hours and I need to stick to that. I have to be honest with myself and others about how much I'm capable of. This is complicated by the fact that I am trying to get a promotion and raise so am trying to impress people. But, everyone I meet with says I have impressed them and continue to and they aren't looking for a superwoman. I have to remember it's work and I enjoy it but I can't let it ruin my health. I have to say no or at least later to some projects. I have to step back from it so it isn't overwhelming and take it in pieces - bite size chunks - and see it that way and schedule it out so I don't overwhelm myself. Again, I know this intellectually, but harder to put into practice. But I must for my health, for myself, for my family.

So, I know the health problems, I know the health risks, I know the causes, and I know the solutions. I must work harder to put my tools in my toolbox to better use. Take time for myself. Regenerate so I can do the other things. Relax and meditate and I will be a better mother, friend, and worker for it. I'll be able to focus more and do a better job as a result of focusing and saying no at the right times.

This is my task - take time out, say no, have self awareness and self control, meditate, get back to real yoga, take my own advise and flow with the pain. Use my breathing techniques, love myself, and get back to me. It will take time, it always does when I get off track, but I can do this.

This Too Shall Pass

Love to all,

Elizabeth

Is My Migraine Going To Be The Death Of Me?

2009-08-16T18:57:00.003-05:00

Short post -
Been in really bad way with migraine lately - pain just won't let up. Got depressed and started thinking I deserved the pain so didn't take my meds for a day and a half and that made it worse, of course. Trying to get back on track and find my way back to happy thoughts despite the constant migraine.

Went to do some errands today and at one store I almost passed out, could taste the bile and broke out in a sweat and had to leave. Sat in my car until I was well enough and then went to another store and got the things I had to have - the first store was overcrowded and I felt like I couldn't breathe in there - and got home okay.

Migraine then got mad that I put it through that and is showing its anger still. Have to get calm and stay calm. Listened to @freemybrain relaxation tapes and that helped for awhile but then the world came back in along with the stress and the pain at its height.

Hate to take shot so early in the week since I can only have two a week, but probably the best idea.

I have to let down my 16 year old son because of his father in getting him a phone that isn't a pay as you go - which is what he has now. He wants on my plan and I want him on it but his dad keeps using his phone as his own and I don't want to pay for my exes phone bill. He's done this before and even said to my sister-in-law whom he is friends with that he's looking forward to me putting Patrick on my plan so he can use that phone and get rid of his own, so my fears are grounded in reality. But, I hate having to say no to Patrick for something not his fault. He lives with his dad - I have one child with me and he has the other. I guess 2 years isn't too long until he's in college and I won't have this worry. I just hope he feels that way. Anyhow, the worrying about it has my head in more pain.

I wonder if one day I will have a brain melt down - annuerism or stroke because of the pain being so constant and all the time - can't be good for my brain.

I want to live a happy good long life with my family and friends. Have to keep trying for a solution to all this. I hope research continues and an answer is one day found.

I don't stay long in these depressions due to pain, so I'll be better again soon and back to me. Can't wait!

This Too Shall Pass

I'll use my essential oils and herbs and meditation and yoga and take my meds and get back up on the horse and get some good work done tomorrow and I'll feel better.

That's the plan - I know we all go through this, just a bump in the road - hope to be back here soon saying I may still be in pain but I see the light and am living my life to the fullest.

Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope

2009-08-09T13:16:00.002-05:00

I have vasovagal syncope, also known as Neurocardiogenic Syncope (NCS). I have fainting attacks during which I get hot, dizzy, my blood pressure drops to next to nothing and I pass out. I can be sitting or even lying down when it happens. I go into jerks and spasms that look like I’m having a seizure (rest assured I have been tested and I am not having seizures).

It happens when my adrenaline kicks in too fast or slowly but too much. Crowded places, Migraines, Anxiety, Pushing myself to far, Etc and Who Knows can all cause an episode. It has been explained to me as that my heart is “allergic” to adrenaline and has an opposite than normal reaction. My blood pressure drops to next to nothing and I faint and then it corrects itself and I am myself again. After awhile.

Sometimes I can stop the fainting from happening if I get down on the ground fast enough and get my feet above my heart. The other symptoms (breaking into a sweat, nausea, jerking and spasming) still happen. Whether I faint or not it takes 20 minutes to get back myself and able to get up and around; it takes the rest of the day to get over feeling light headed, exhausted, “out of it” and able to get back to a semblance of normalcy.

I have had this since my teens and have a long list of times I’ve fainted. This is scary for my friends and loved ones to watch and they have a hard time sometimes seeing the humor even when a long time has passed. However, I wanted to compile a list of my most embarrassing episodes that have occurred in public. It happens at home and no one but me and mine know and I can handle that. The public is another thing. Sometimes it’s their reaction (sometimes caring and going for help and sometimes assuming I’m on something or drunk) and sometimes it’s just the embarrassment I feel knowing I did it AGAIN!

This post is meant to be humorous about a serious topic – sharing my most embarrassing fainting moments. But, hopefully you will find some comfort in not feeling alone if it has happened to you or you can find more information about this and other fainting conditions. Go to http://www.dinet.org/index.htm - Dysautonomia Information Network and check out @jeanneendo blog posts about Dysautonomia at http://chronichealing.com/ – it’s a multi-part series and has a lot of information in it.

I'll do this as a countdown of the top five (there are more!) most embarrassing fainting episodes.

Number 5:
16 years old at the local teen hangout – bowling alley/pool tables/arcade: I was in the pool room with friends when something swept over me and I felt like I couldn’t breathe. Broke into a sweat and my only thought was to get outside where there was air. So, I say excuse me, I’ll be back, not wanting my friends to know what was wrong. As I’m leaving, weaving through the pool tables, it gets worse all of a sudden and then nothingness. (I had apparently freaked a guy out who was on the other side of the table leaning down to make his shot when he sees someone walking by and then collapse right across from him). I come to in someone’s arms and immediately expect it’s my friend Mark, who has just had surgery on his knee. I thought he shouldn’t be carrying me and start squirming and saying “put me down, you’ll hurt your leg.” Turns out I was ignored and carried into the women’s restroom by the guy that was playing pool and watched me collapse and my friends following him. I get nauseous and start going into spasms and vomiting. The guy waited outside the restroom for me and gave me and a friend a ride back to my house so everyone else could stay out. I thought that guy was my hero, but then he kept calling and annoying me and I had to tell him to go away.

Number 4:
In my thirties at an outside theater watching Chicago the Musical: I had driven that night (my mom and some friends) to the play. We had stood in a lot of lines, including bathroom lines being the most recent and the bathroom was hot inside. All those people around me. I had had a glass of wine at the beginning of the show and we were in intermission. People were standing up all around me and talking and it was crowded and I thought, I just need to go sit down in the back area by the food area at a table and get away from all these people for a minute. I was feeling hot and a little nauseous and shaky. So, I told those around me I was going to go buy a water so they didn’t follow me and see that I was going to go lie down for a minute on a park bench. But, they thought, great idea “I’ll go with you.” Probably stressed me out more cause I didn’t want them to see what I knew was about to happen. So, I get up there and say I’m just going to sit down for a minute and they said I thought you wanted water. Water sounded like a good idea so I went and stood in line for water. Bad idea. Soon, I was shuffling and trying to stay conscious until I had to get away and stepped out of line and got nearly away to a wall and then nothing. Came to with my mom, best friend and health workers at the event surrounding me and them telling me I had gone into spasms and fell to the ground. Had to calm everyone down and tell them I would be fine and no, I didn’t need to go to the hospital. A crowd had gathered murmuring about “is she drunk?” No, just need air.

Number 3:
In my late twenties at a restaurant having dinner with a friend: We had to wait awhile in the waiting area for a table, was a busy night I guess, and I don’t know if that’s what did it but is when I started feeling it coming on, I tried to just think to myself, if I can just get to the table and sit down and drink some water I’ll be fine and my friend, Laura, will never know I had a close call. Well, I did make it to the table and sat down, ordered water and our dinners but before our salad’s showed up I knew I wasn’t going to make it. In order to not have an episode in front of the whole restaurant and be embarrassed with Laura, who had only seen me pass out two other times at work, and not to ruin her evening with me, I excused myself to the bathroom. There was a line but not too long and inside the door. I fell onto the bathroom floor and went into spasms and jerks but if I did pass out it was only a matter of seconds because I remember the fall and the “seizure” like symptoms. Freaked out all the women in the bathroom and the manager was asked to come in and check on me. I said I’m fine if I can just be next in line for an open stall and no, I didn't need an ambulance. Was able to get up and crawl on the dirty restaurant bathroom floor (a nice restaurant, but still, bathroom floor) into a stall and lied down and put my legs on the stool and took my time. My friend didn’t know why I had spent 20 or so minutes in the bathroom but I was finally able to go back to her and barely touch my salad and none of my meal claiming I just wasn’t hungry after all.

Number 2:
In 2005 at a midnight play: Friends and I thought it would be fun after the April 15th rush (I’m a CPA as are some friends) to get together and go see a midnight play in Lawrence KS – about a half hour from KC. The first time my later to be husband experienced an episode which scared him a lot and embarrassed me him having to see me like that. So, we are about halfway through the play, "Hedwig and the Angry Inch", and I had been standing up in the back because I asked my boyfriend if we could get out of the crowded seats since the chairs were so close together and it felt stuffy and constricted. After a little while of standing there and starting to shuffle from leg to leg, I told him I think I needed to sit down. He found me a chair at the back and we sat down. After 15 minutes, I said to him, “this isn’t going to be good, I’m sorry,” and then nothing. I had fallen out of the chair and gone into spasms on the floor, ripping my skirt and terrifying my boyfriend. I came to on a couch outside the theater, just inside the doors with people all around me and my boyfriend yelling at people that I hadn’t been drinking, it wasn’t funny and to shut the h#ll up. That was a fun ride back to KC – the friends I went with didn’t know until after the play when they couldn’t find us until they got out of the theater and I was lying there. I needed to use the restroom, throw up possibly, but it was up two flights of stairs and my later to be husband couldn’t carry me – he too has bad knees. But, I lost that battle too but a girlfriend followed and helped me in the bathroom. She had witnessed this before but told me my boyfriend was terrified for me and was really shaken up. Took me a while to stop shaking myself. The ride back to KC, I reminded my boyfriend that I had told him I had these episodes in the past but he was not comforted. I had to go to the doctor and have an EEG and wear a heart monitor for a month to ensure him I was okay. Thank God he still married me!

And the most embarrassing public fainting episode at number one:
In my early twenties, around 22, at an Improv Comedy Club: Was with friends and the only open seats were at the top level of a set of bleachers. All the tables were full by the time we had gotten there. Was sitting next to Holly and things went okay for half the show. I had started feeling nervous and anxious about I can’t remember what and then started thinking what would happen if I passed out at the top of the bleachers and fell down that far? Just before the break was over and the comedians were coming back on stage, I turned to Holly and said, “it’s going to happen, get me out of here.” Because I couldn’t fall down all that way and thought I could make it outside and lie down until it went away. We got to the middle of the stage walking in front of it and then nothing. Holly apparently begged the people at the front table to help her with me but they assumed I was part of the act and wouldn’t help. So, I come to outside lying down with all the comedians standing over me. They were apparently the only ones willing to help Holly with me and knew that I was not part of their act. So, I disrupted the show for everyone. Even once I felt better, I was too embarrassed to walk back in there through that crowd that hadn’t helped and face the comedians again or become part of the act – I’m sure I was but I didn’t stick around for it. The comedians gave me a free pass for another show and I said nice to meet you all and goodnight.

So, if you have any form of Dysautonomia, I hope this shows you that you are not alone out there. Hang in there and This Too Shall Pass.

Elizabeth

How to talk with bosses changing your job to work with your Migraine disease

2009-07-25T10:48:00.003-05:00

I was placed on disability last year for 3 months because my migraines which had been constant at that time for about 6 months had gotten to the point of so bad I couldn't work and had to be hospitalized. My work was very good with me during this time, but I worried about coming back to work and continuing my career path.

I learned from my stay at MHNI that I would not be able to go back to what I used to do. I'm a tax CPA working for a national firm. I worked 80+ hours a week during busy season and around 50 during other parts of the year. I was teaching national training, involved in 2 national tax expert communities and was moving my career along well, meanwhile my health was deteriorating and I was ignoring it. Working as hard as I could when I felt good enough because I knew there would be times I would be unable to work. I was doing the catch up marathon which only brought on more pain.

I hit a wall obviously and was unable to continue as I had - medically unable no matter what my career ambitions were.

I had been doing a lot of work with the national tax office and national teaching on top of taking care of my clients and becoming a specialist in a few areas. I was trying to do it all. My reason was that I wanted to be a technical expert - my ultimate goal for my career was to be working for the national tax office and doing expert technical consulting rather than managing clients and being the typical CPA - I love my clients and working with them - but I had a goal to work at a higher level away from my own clients and helping others with theirs in specific technical areas and being an advisor. As well, I wanted to teach more - I love not only the teaching, but the behind the scenes of it deciding what to teach at what level to our staff and managers and developing the programs.

Now, my health was flat out telling me I couldn't have it all anymore. So, what to do? I had options:
I could apply for a job at a client and work only with one client's issues which would be a lot less stressful as I wouldn't have to "know" everything and could know what was coming day to day. [I didn't want this because I love having something new everyday and continuous learning. I didn't want to do the same thing everyday or every year]
I could take on offer with a company offering to allow me to do international work or a client that wanted to prep me for a CFO position. [These are still options I think about if what I'm doing doesn't work, but the problem with these is they would require I "prove" myself at a new environment, educate on my condition or ignore my condition and overwork until I've proven myself which I don't think my health would have let me]
I could stay where I was and take on less challenging work, reduce the more challenging clients from my workload and reduce my hours and basically put a stop to my career advancement. [Again, not attractive as I enjoy the challenge and am not ready to stop moving up and didn't want to be average - I wanted to be an expert. And I would have to give up the teaching which I love so much so compromising on what I really want could leave me unhappy in the end and re-evaluating later or trying later to move back up by overdoing it again.]
I could go out on my own or with others and start a new business with much less low key work and less technical or challenging clients. [Bad option because I am not a sales person and the stress of that could put me in a world of hurt and I need the comfort of being able to have a health care plan that is at least somewhat affordable. Also, I'm the primary breadwinner so would cause a decrease in income for my family for a number of years or could fail and the stress could hurt my migraines more.]
I could stay on disability - or move to long term disability - it was an option my doctors gave me and told me if I didn't change something would be difinitive for me without my input. [I just hate the idea of it. If I can be capable in some way to be out there working I need to be for my own psyche. And again, I am the primary bread winner.]
I could go to work for a regional or local CPA firm where the issues and clients would be less challenging and therefore less stressful. [I've done this before when I was leaving an even larger firm than I'm at now because of the stress and migraines. I was bored with the work and didn't feel challenged and hated going to work everyday.]
Or I could try to get what I wanted from where I was. Stay on a career path, do more national tax office work and technical consulting and teaching and get rid of the client management and deadlines that always lead to let-down migraines. [How to go about this? How to get what I want?]

Well, being an analytical person - I am a CPA afterall - I went through all these options as I have here and weighed the pros and cons. Then I decided to try to get what I wanted out of my career. Here's where it gets sticky.

1. You can't go into your place of work and ask them to take you off of the client management - the money making place - and have you only do national level - nonbillable work. They won't go for that because it isn't in their best interest.
2. Remember that the company, no matter how much they care for you as a person, has to look to their bottom line and if you are contributing to it or not.
3. Although your boss may feel for you deeply, they can't, especially in this economy, let you do what you want because it makes you feel better. They have to look at what you contribute to the organization.
4. So, I knew I couldn't come at this from an emotional angle. I already knew they cared a lot for me - they raised almost $2,000 for me while I was on disability to help me pay my medical bills and buy food and get by on the lower disability pay. More tears and help me no matter how much they want to help, isn't the business of business.
5. People - who don't fully understand - get tired of the complaining. I've seen it before at work with non-health issues. The constant complainer may be listened to at first, but then is ignored and then is looked down on. So, I couldn't complain.
6. So, I came to the conclusion that I had to sell myself to them, much as I did in my first interview, as how I would add value to the company.
7. I had to be sure to include my limitations and accept them but frame them as benefits to the company - hard to do when you are in a lot of pain and can't see benefits.

So, what did I do. Well, I'll start out by saying that I now am doing everything I wanted in my career with a reduced workload and reduced hours and am seen as a resource to people in my office, national offices, and higher ups. I am shooting for a promotion this year - even though I was on disability last year - and I think I have a good shot at it and a good raise and bonus. So, I think I was successful. Here's what I did.

1. Took all of my short term disability that my doctors told me to take - I did not try to go back to work sooner to show them I was ready to rock & roll. I used the time to hone my skills at yoga, stress reduction, noticing and becoming familiar with triggers and very importantly, learning how to say no. (Very difficult for a woman, I must say). Take the time off. Don't jump back in too soon.
2. Realized I couldn't do it alone and got a great therapist to help me role play how I would frame then and continue to frame my abilities and limitations. Role playing talking to my superiors was monumentally helpful because the first few times I broke down and reverted to the pain and coming at the situation from the emotional side - pleading for help. It took a lot of practice to learn to use humor and other tools when talking to my superiors. A lot of role playing. Do it - often and continuously because you will continue to need it. Whether or not you do it with friends or a specialist, Role play it out.
3. I wrote a sort of resume - more a job description of the job I wanted. I used a lot of detail, broke it down to many items and included how each item benefited the company. Breaking it down to many items looks like a lot that you are able to do, even though you are reducing your overall workload and stress. Extremely important to write down the benefits the company gets from your performing said activities because it's written down and helps you stay on that focus rather than reverting back to the emotional.
4. I set an appointment with not only my direct superiors but also with the president of the company - who I was familiar with - I wouldn't recommend if you don't know or have a relationship with the person. But, I made it very formal and on my terms. So, I wasn't having conversations with different people at different times and talking about how I'm doing or adding personal conversations - which can lead back to an emotional rather than what I had to aim for - the business' advantage of my new responsibilities. I took charge of framing the conversation, where it was, everyone at the table, a set agenda, business like and formal. I knew they would want to ask how I was doing and I couldn't let that derail me from my mission - to sell them on my new job responsibilities. So, you frame the conversation and agenda and place of meeting.
5. I went point by point down my pre-set agenda and written job description (resume) and pointed out what I wanted in a statement and then elaborated more than what was written on how the company would benefit financially and what value I was going to add by changing what I was doing. (Note it may help to ask others in the office that are friendly to you how they think the company would benefit - get some help on this one. I did from former colleagues, other CPAs that are friends, friends in other industries even, and from my husband and family). And again, I practiced my presentation over and over to strip it of emotion.
6. If my condition was brought up I was honest about how it would effect my life and why the new job description would allow my condition to interfere a lot less. For example, working from home so I could take breaks and keep on task. How taking away the deadlines would allow me to accomplish things more easily in a timely manner because the pressure wouldn't be there. How I had learned to say no if too many things came on my plate at once and how to manage my schedule. That I had taken classes or such on how to better manage my schedule. That I was seeing a therapist to help me through my condition and how to work with it so things didn't get out of hand before I could manage them. That I would remain honest with them and keep them updated on my condition and how I was handling things and we could adjust as necessary my job duties.
7. I pointed out that I was going to be offering the firm a service that was needed. That many managers, including my former self, needed someone that didn't have their own clients so were available to help when situations came up. That many in the firm have expressed the need for someone that was a specialist consultant. That I would be able to work on billable projects that currently are sitting on other manager's desks because they can't get to them with all the other things they need to do. That the national tax office had many projects that they were willing to pay individual offices for the time of people to handle those projects. That the firm in its mission statement wants to be a business advisor and how when everyone is overwhelmed we miss that often and I could fill that role. How the firm's goal was to get all offices on a single platform but no one had time to work on templates, models, etc. so I would be working toward the firm's goals. How in our office, many expressed a need for someone to be a go to person for setting up and keeping updated templates, how to guides and help younger staff by teaching more lunch n learns on specific topics but no one currently had the time and so when they were done, they were always rushed, but I could fill that needed space. That the national tax office needed more instructors and people developing webinars and trainings but no one had time and that since trainings took place mostly in our city, the cost of having others travel would be reduced, while the national office would pay my local office for my time on those projects.

A lot of this is specific to my situation, but I hope you can take something from it and use in your situation. I would love to help you role play or review your "resume/new job duties" requests.

A short list of the above to remember is
1. Take the time off your doctors tell you to for disability. Don't jump back in too soon. Use the time to put yourself together and your plan and decide what you want.
2. Get help. And role play a lot.
3. Write it out - exactly what you will be doing in many items and the benefits to the company to help you stay focused and keep off the emotional plea.
4. Take charge of framing the conversation, the agenda and place of meeting. Try to keep it formal and have all parties at the same table. You set the stage don't let them. Be assertive.
5. Practice the conversation before hand a lot. Learn to stick to the agenda you wrote. Practice keeping distractions at bay and how to deal with them when they come up.
6. Be honest about your limitations. Do not try to oversell yourself. You are good enough as you are. Introduce how you are going to handle those limitations.
7. Point out specifically how you will meet a need of the company that currently is not being met in your current workload. Give them a business reason to say yes to your request.

I hope this helps and again, am here to help others if they need help writing up something, practicing, or venting.

All the best wishes - This Too Shall Pass

My conversation with my neurologist about healthcare

2009-07-18T11:32:00.005-05:00

I went to the neurologist on Thursday with a lot of questions about my health, the increased pain over the last three weeks and what we could do or adjust. Among other questions I'll get to in a minute and are more important.

I'm hypothyroid and it was controlled for many years. When my thyroid goes off, if doesn't go a little bit. My TSH levels (which are supposed to be 4-5 units and you are hypothyroid if it is 20 units) is either normal or 150 - 450 - 450 was at my worst when first diagnosed. It went off - TSH of 250 about the time that I went into a constant migraine mode - actually a few months after. We got it back regulated and was fine 6 months ago and then a few weeks ago it was back worse again with a TSH count of 154. Who knows how long it had been off but cooincides somewhat with my increased pain. Which could also be caused by the weather, my stress, or any number of other things - let down from stress is a big trigger for me.

So, my neurologist, correctly I think, decided with me that we shouldn't make any major changes in my migraine treatment until we can get my thyroid back to normal because the thyroid can be causing my meds to not work effectively and we would have a hard time telling if new meds were working or not.

But, I also talked with my neurologist about what's happening with the FDA and acetamenophen freak out. I have been so stressed and scared about all the talk because I've had trouble in the past with my insurance denying me migraine treatment meds prescribed by doctors which caused untreated migraines and I think led to the constant migraine. Maybe it would have come anyway, but even my docs think that having let migraines go untreated contributed to my current situation.

I now get the meds I need but am worried right now about the FDA and talks about over medication and cutting meds. As migraines causes are so varied and the treatment is so varied and one thing doesn't work for another patient and many meds are off-label use for migraines, I see others thinking of it as a target for saving health care costs and meds and thinking migraineurs over use meds.

I don't over use my meds - I go strictly by doctors orders and don't take any narcotics (mostly because they don't help anyway - except before surgeries I've had when they've given me phentinol (sp?) and it instantly took the migraine away (only relief I've had over the last 18 months) but we tried the patch and that didn't work) so I don't think I should be a target but worry that I am. I take Toradol shots twice a week - I would more often because they are one thing that always lowers my pain level instantly - but it is bad for my liver and I follow the rules. I don't want to be punished for people that over use or abuse medications - a lot of time not their fault even when they are just trying to get out of pain and end up hooked. I feel for them and worry about becoming like that myself which is why I am so strict about following labels and working with my doctors to find non-narcotic treatments for my migraines.

Anyway - I guess I'm never short with these even when I think I'm going to be - I talked this out with my neurologist - my fear that "they" will come after my meds next - especially my toradol since it can hurt your liver. She was wonderful in calming me down. I have to give her a shout out - Dr. Laura Reilly with Dr. Kaplan's office and Jenny Ravenscroft my PA, Thank you all!

She calmed me down telling me that their were many like her in the migraine business that would stand together and not let "them" take away our treatments. That the migraine doctors would stand up for us and fight for us. I've seen my doctors do that in fighting with my insurance company for me and sometimes winning and sometimes losing but I have seen them stand up. Even with my work, they wrote letters explaining my condition to them. I hope that she is right that the many doctors at MHNI - Dr. Saper and his team - that helped me and the others at clinics around the country that help people every day will stand up and not let the FDA take away our meds.

She explained to me what was going on. Rationally - she knows as a CPA that's the best argument to make with me - she stated what was going on and why she agreed to a degree about what was happening. According to her, it's about acetamenophen and the worry of overdoses. She said she always thought extra strength tylenol should have been a prescription because people take more than the label dose. If the bottle says take two - why not take three - that will work better, right. I admit when I was treating migraines over the counter, I did that so a logical, rational argument to me.

So, according to my doctor if you take away the extra strength tylenol people would have to take 15 tylenol a day to just go over the max dosage to the danger area and people are less likely to do that. With the extra-strength - it only takes 5 a day to reach the maximum dosage. Then, still according to my doctor, vicodin and the other narcotics that contain acetamenophen prescribed to patients could even quicker get over the max dosage if they took vicodin plus 4-5 extra strenth tylenols a day. So, she said, there needed to be more control there to help people not accidentally overdose. She said my meds were safe and not on the radar yet and she would be upfront and let me know if she thought anything could be targeted. And again that migraine specialist doctors would rally for their patients.

I know not everyone has a great team of doctors helping them with their migraines like I do and I feel for you all. I have a neurologist and PA that specialize and will never give up on me. They see me once a month and answer all my emails. I have a new sleep doctor who worked with Dr. Saper at MHNI for five years working with migraineurs and their issues. I have an accupuncturist who says it may take a while - 18 - 24 months - to get my body out of what it considers a normal state (pain) and retrain it but won't give up on me. I have a migraine massage therapist who works with my accupuncturist and works with me once a week giving me at least an hour of less pain. (I've had normal massages and deep tissue massages that make the migraine worse even though feels good at the time so I'm lucky to have someone who knows how to do a migraine massage). And I have my therapist who works with me on how to live with the pain and live my life and not just abide, who keeps me from overgeneralizing, and who helps me to remember to stand up for myself. All give me extra tips on essential oils, meditation, yoga, herbs and all the rest and study to keep up to date on my problem and the latest. I know I'm very lucky. I hope everyone in pain finds a team that won't give up on you and really listen to you. I'm still suffering but as long as I have this team behind me I won't give up either and will live my life to the fullest I can and will continue to see the light at the end of the tunnel.

So, I feel better about not losing my meds and will stand up with the doctors to make sure insurance companies, FDA and other government agencies know that we are here and we need relief and we are a valuable part of society if you help us find that relief.

This Too Shall Pass - my neuro even said that to me as her last statement - did I tell her before that this is my mantra passed to me from my grandma or a coincidence?

Take care all,

Elizabeth

Flow with the migraine pain

2009-07-12T16:34:00.005-05:00

I've reached a pinnacle. The 10 of 10s in migraines once again.

The menstrual migraine. Even though I have constant pain, it does spike up and down on me over the day or week or month. I've written that the last three weeks have been horrible and I've been at a 10 other days this last three weeks but not for the entire day and I've been able to find relief. Today started with a thunderstorm and my menstruation and my head hates me for both. Storms over, but head is on fire. My ears are ringing so bad I can't hear much else. I've been deep breathing, yoga poses, meditation - as much as I can - and flowing with it. It's getting me through the day and I know I will survive to have another good day as well as another bad one.

I learned something very helpful at the Michigan Head Pain and Neurological Institute when I spent three weeks there last summer. I learned a lot but one of the best was a class on flowing with the migraine. Not fighting it but letting the pain be and flow and flow with it. Sounds impossible at first, I know. I had to use a recording to help me through it for a long time when I started, but I'm much better at it now and can turn to mode "Flow with it" on my own. I have to consciously remember to do it.

I start out like always thinking "I want this pain to stop!" and "I have to get it to go down!" and fighting the pain. Then I remember and consciously stop and say to myself "don't fight the pain, it exerts to much effort, let it flow" Amazingly after awhile I relax and I feel my muscles in my head relax. The pain is still at top notch, no change there, but the muscles in my head, neck and face let up.

Then I repeat a phrase that helps me - sometimes "This Too Shall Pass" sometimes "Pain is not all I am" sometimes other things I've heard. Sometimes I have to keep repeating "Flow with it, let it flow" over and over until I can turn on the auto mode of relaxation.

Then I can meditate. I can look around the room (not moving my eyeballs cause that hurts) and just look at things. I look not at the things themselves but the shapes, colors, angles and such. I breathe deeply and purposefully and let the pain flow - let it be.

I use my essential oil - MGrain - that has basil, peppermint and Lavendar in it that allows me to breathe deeper and opens up the passageways in my head. The pain is still just as bad, but I'm flowing with it.

Like an ocean I feel it ebb and flow. the tide coming in and out, the throbbing, pulsating, my ears ringing but I don't fight it - I let it be. Just be. I can feel above myself somewhat and the pain as not a part of me but something happening. Yes, it still hurts so much, but I am apart from it and it just flows.

Time passes and as I relax more I am able to stretch, to talk, to type a blog, to meet with a client. I'm not fighting, I'm flowing with it. It gives me a much needed breather from fighting and wishing it would go away. No worries about the pain, just letting it be, letting it flow.

I thank MHNI for teaching this to me and I hope it will help others. Consciously forcing myself to not fight, to not worry, to not push, to let it be and let it flow like the ocean. It helps me believe that I am not the pain.

So, to all those out there in a lot of pain, try this out as crazy as it may seem, Let go, let the migraine flow, stop fighting for a little while and let it flow, let it just be. Be serene amidst the pain. It takes more energy to keep fighting it when you are in such pain. Think of it like labor coaches tell you - refocus and make yourself apart from the pain, different, it's there and you're here.

I hope you can get some relief from this if you too are in great pain - not relief from pain, but relief from constantly fighting the pain. So, let's all take some time out to just let it be and let it flow.

Another week of pain and accomplishments

2009-07-11T11:36:00.003-05:00

Almost a week since my last post? I've been busier than I thought. It's been another week of really bad increased pain. I'm hoping it has mostly to do with my thyroid and will get better soon as they straighten that out. Of course we can't rule out the weather or stress or fighting with my husband.
I got to do some things this week outside of work and migraine which is good. Sunday I went to the family picnic. This is me with my big hat and sunglasses to keep the world out from causing me pain.

Then, on Tuesday I went to dinner with my YaYa's - girls dinner out. My friend Mary lives out of town so I wasn't missing that dinner no matter how bad it hurt. My friend Vicki graciously agreed to drive me since I was in a lot of pain and I don't like to test the waters of driving in that much pain or on pain meds.

Then, Friday I got to go over lunch with my friend April to look at wedding dresses for her upcoming wedding. Again with hat and glasses cause it can be bright in those places. That was good to go to.

Thursday I unfortunately had a complete breakdown at work and even brought someone else into my tears. Tired of the pain and how it affects my family. My husband on Wednesday night had reached his limit again. He's not mad at me he's just mad at the pain I'm in but it sometimes comes out as toward me. I tried to talk him into going and talking to someone about how hard it is to take care of someone in pain so much of the time because I know it's hard and he holds it in until he blows. I totally failed at that - he says if he can't fix it himself than he has a bigger problem and he's not going to talk to anyone else about his relationship with me. Even though he knows it makes me feel better to have a therapist. He doesn't like that either though, he worries I'm telling her something bad about him. Which I don't because he's a great help and a great care giver. He is also dealing with his 94 year old grandma who is getting worse with her memory and acting up - not like herself at all and that's so hard.

I did get some good work done this week. Finished the training materials for the classes I'll be teaching the next two weeks. I will be wearing sunglasses or turning off the lights in the classroom - most students are ok with that I've noticed if you are up front about why and tell them you'll do a better job teaching them in those conditions than any other.

Clients the same, I've been up front and honest that during the meeting I need the lights off or I will be wearing sunglasses - I prefer the lights off because the lights over my head in meeting rooms produce some kind of heat that aggravates my migraine even with my sunglasses on. I tell them you can have me smart and helpful or I opt for the possibility that I'll be on the floor in horrible pain unable to help. When they comply with my requests and I'm able to function well they are happy with my productivity and what I can do to help them. I haven't had a single client be contrary and most are very gracious and appreciative of me.

It amazes me how people with this kind of pain or any, for me it's constant migraines but any sort of constant pain, can push it to the back and turn on for the client, teaching, family matters, whatever has to be done and then when it's over you're back to "how did I do that with this much pain?" Well, that seems to be me. I had one client tell me they were very impressed with me and when our firm holds external webinars they would only sign up for ones I was teaching - quite a compliment. I also won a new client consulting project that I had been trying to get in with to talk to for months. After talking to them for 15 minutes I had them sold even though I needed another hour to explain what I was suggesting for the consulting work. So another win.

I am happy that I was able to accomplish things and I have a to do list a mile long but I just breathe and say I'll get to it when I get to it - so unlike the person I used to be.

So, still chugging along and still in high pain, can't wait to blog that the pain is less again - I don't even think about no pain anymore. Oh, I also got 3 full yoga workouts in last week which is better than I had been able to do so maybe I am on the upswing.

Here's to living life and not living pain!

Increased pain, Work going well

2009-07-05T11:52:00.002-05:00

Short post because I'm going to a family picnic in just a few, but wanted to say that the high level of pain I've been experiencing the last couple of weeks isn't over yet. I did really good on Thursday and got a full yoga workout in. Friday I got my migraine massage and did pretty well after that and was able again to do a full yoga workout. Then, late in the day Friday the pain came back full on.
Saturday I drove a couple hours picking up my 16 year old from his dad's - the drive always angers the migraine beast. Then nieces and nephews and all came over to watch the fireworks from our parking lot. The kids are young and we have a great view of the neighboring display from our lot so no need to deal with traffic and et al especially with young ones. It was great to see them and hold the babies - I think that baby smell and the calmness in them eases up the pain a bit.
I didn't go watch the fireworks because the pain had become unbearable before they began and probably wouldn't have anyhow since they can cause pain.
Today, picnic with my side of the family and I am in horrible pain. I'm going because I want to see everyone and I want to have time that isn't focused on this latest great pain. Don't let the beast win, right?
I got a lot of work done over my 4 day vacation last week that I can use toward my time for next week so I can take it easy and still get my hours in. I'm very proud of the work I did. I developed from scratch a training for FAS109 - Accounting for Income Taxes - including the presentation, templates and case studies - it's a four hour class I'm teaching later this month. I really enjoy this part of my job which I actually wouldn't be allowed to do as much of without the migraines.
I had to change my work arrangements due to my illness and it's actually helped me be able to do more of what I want to do at work and less of what I didn't like - the CPA deadlines, etc. Now I'm a consultant to the consultants and work mostly from home and work on National Tax Office items and National Level Teaching. I have given up almost all of my direct client management except for my international clients and consult on international and technical issues so I get to do research, teaching, develop webinars, and consult on technical issues. I guess I have the migraines to thank for that. Especially because I've become known as such a great resource since the change in my job description that I may get a promotion this year and the president of the company has told me to work from home almost exclusively because I was able to show them how much more productive I am at home than at work due to the migraines and they are making money off of me.

Also, people told me that I needed to stop working so much for years and years and without the migraines I don't know if I would have been able to do so.
So, thank you God for giving me the constant pain if only because you have helped me work less and work better at what I want to do. My therapist asked what I would do if the pain went away and I said - oh, I could get so much work done and work really hard. She said then I haven't gotten the message yet to slow down and until I do, the pain will stay. A message from God telling me to slow down and focus on what's important, me.

The other part of it - my brain just plain old misfiring - is just a fact of life that I have to deal with. I hate the pain so much I sometimes think of dying, but I will survive and I will not let it take over my life. However, right now it does have most of the control. I am in so much pain right now it's hard to do anything. But This Too Shall Pass, as Grandma always said and I will get back to a manageable amount of daily pain. I believe it will happen. I just have to keep believing and taking care of myself.

So, off to the picnic to see everyone with my big hat and big sunglasses. And knowing I can leave anytime it gets to be too much. Thankfully, my husband is driving. Didn't turn out so short did it. I'm a rambler, but it's also therapy.

Hypothyroidism, Increased migraine and thank you

2009-07-02T11:48:00.002-05:00

Been awhile since my last post. It's been a really hard couple of weeks with the heat and storms and I hate trying to figure out what triggered the latest hard times. I also have been really stressed and fighting (or non-fighting and lack of communicating) with my oldest son. Also, my thyroid has gone off again. I had thought my thyroid completely didn't work but apparently it could get worse.
I was diagnosed with hypothyroidism when I was 22 when I was hospitalized for depression. It was a routine test in the hospital. No doctor before even thought about testing that because I didn't fit the description - I was underweight not overweight and I was depressed and my mom is bipolar and that seemed to fit easily better for psychologists - Think outside the box people - and bipolar was "popular" diagnosis back then.
Anyhow - I was off the charts and the worse case they'd seen in KU hospital. Your TSH level should be around 4 units and they diagnose you as hypothyroid when it's about 20 units. My test came back twice with 450 units. That's the test of your pituitary gland trying to tell your thyroid to produce more thyroid hormone which is why high is worse. Because I was at a teaching hospital I became the talk of the hospital and was visited constantly by students feeling my neck and talking to me. No one told me what the big deal was until I finally asked and they said I should be in a coma or worse with levels that high and they were just amazed I was still able to somewhat function. Apparently if you are bad enough you go past the overweight and to the other spectrum - underweight. But because of that I was misdiagnosed for about 6 years and put on medications that didn't help.
They got me regulated and all my depression and other symptoms disappeared - related to that - not the migraines or dizziness or fainting spells or anxiety attacks - those were other issues.
I keep thinking one overriding problems or diagnosis will be the answer to all my issues but I'm having to give up on that. Seems strange one person can have so many different problems, but here I am.
Anyhow, my thyroid was regulated and did fine until my mid thirties when it went off again with around TSH level of 250. We got it back regulated again and was fine even six months ago but then just last week for my six month test my TSH was back up - 150 or so this time. My doctor says my pituitary gland is a drama queen and screams anytime there is too little thyroid hormone so they don't worry if it's 20 or so and keep me at the same dosage, but 150 is too high. My T4 level was also off.
You have to take care of your thyroid because it affects everything else. I think more doctors should run the test which I think is much more common now, thankfully.
So, a tough week but I did get to see a friend of mine and her little girl who I think of as my neice. It hurt driving there and back but was worth it. I also was able to talk with my husband about our finances and get some relief there from us making the decision to wait a couple of years before we buy a house. As a CPA I'm obsessed with budgeting and that decision (we were going to try this fall) was putting a lot of pressure on my budget and us and my stress.

Finally, thank you to twitter which has opened my world to others who suffer like me and give me hope that I'm not alone, and there is a life out there outside of migraines. Thank you! You've been a great support the last couple of weeks when I was getting depressed from the pain and seeing no way out. I'm so glad to have my therapist who helps me deal with the pain and my state of life and to live and get angry the right way and for the right things. To not think in absolutes and to not mindread my friends and family but to open communications and feel okay about saying no. I wish no one was in the pain that I'm in constantly, but it helps to not feel alone so thank you one more time.

Bad Migraine Week - facial changes

2009-06-28T19:59:00.003-05:00

It's been a really bad week for me with my migraines. I haven't been able to do much of anything. Yes, I have accomplished things at work and have been able to fend off the pain enough to get work done, but not like a usual week. I have a constant migraine, but the pain level has been so increased this week I am having a hard time standing it. I hate to be a complainer, but enough is enough and sometimes you have to just cry - even when you know it will make the migraine worse. It's weird sometimes you feel like if you cry it will ease some of the built up tension and swelling but it's a fine line between that and making it worse. When it's really bad I don't even need to cry outright, the tears just come without any crying. My head swells so much - people can see the difference in my face.
Which is another thing. I look at pictures of myself only a year and a half ago and I look different. It isn't aging, it's the constant pain. I want to look like me again. Now, I don't like my picture taken because it doesn't look like me. I'm swollen in the forehead and temples and it's like my facial structure has changed. I'd love to figure out how to look like me again. I do some research on the web but I don't find anything about this subject. I'm sure I can't be the only one. Everyone notices that I look different now then I did before and just put it to the fact I've been in pain so long it shows on my face, but I think the structure has changed - or maybe not the bones, but my facial muscles.
Are there facial exercises or creams to use to bring back the muscles to look like I used to. I never thought of myself as beautiful, but now I appreciate my looks before because they seem so far away now. I want it back.
Same for my weight - I'm not overweight but I was last summer with all the high doses of steroids I was on for so long. Gained 30 pounds in three weeks alone. Now, I don't expect to be the weight I even was when I was thirty, but I do want my shape of body back. I've lost 15 pounds of the 40 I had gained. Again, still in the normal weight range for my height and all, but I don't look like me or fit into my clothes. And I still have the steroid pooch in my stomach. I walk but not as often as I'd like to - the weather or the sun or my migraine often interfere. I can't do aerobic exercise because my head will have none of that. So, I mostly do yoga and stretching - things that are low impact.
I have to be patient and keep looking for solutions and focus on the primary one - getting to a low level of pain daily. I've given up on pain free. I just don't want to be in this much pain all the time - I'm strong enough to deal with pain everyday, I just can't do this level all the time and I have been doing it so I guess that's not true, I can. But, I hate the side effects and the way it's taking away my life.

I need to have some relief so I can keep my strength and spirit up. The migraine massage I had last Friday helped during the massage -but came right back. Of course it's been either super hot and humid or stormy weather so maybe that's to blame. But, I always try to find the reason and it seems the real reason is just my brain - it hurts - I have a faulty link somewhere up there that triggers pain for too many reasons beyond my control.

I am going to try to have faith and I am doing more writing - starting this blog - as well as a journal and that helps relieve some stress. Writing my life story - if even just for me. And there's work which keeps me busy and gives me boosts of confidence. And there's my incredible husband who cares for me and takes awesome care of me. My beautiful children who don't always appreciate me, but that's the age - their 20 and 16 and I didn't appreciate my mom till later - I can't wait for the older one to turn 25 and appreciate me again. My 16 year old still loves me a lot and isn't as hostile. The 20 year old just needs to get out on his own and start his own life without me and look back and remember and appreciate me from his own life. That's what I'm holding on to.

Anyhow - here's to hope - hope for less pain next week and hope for feeling less depressed and more hopeful. This Too Shall Pass - my grandma always said. I miss her. Wish she was here - and I know that she is here with me or up there pulling for me and doing her best to send me all the help she can. And to my aunt Becky who I dreamed about a month ago and felt her presence so close - I know they are here with me.

Ok - off topic there - Hope is the Word. God Bless

Work today - CPA stuff with migraine

2009-06-25T19:34:00.003-05:00

Got a lot of work done today - a lot of tax stuff - mostly international FBAR questions and answers and FAS109 review for a client for which I came up with more questions than answers - that's the way it works mostly. Oddly, or coincidentally, I had just read the other day about an issue with FAS109 and CSV of officer's life insurance and then I offer to review this FAS109 calc for someone - a client I've never worked on and they have the issue. Funny how life gives you those moments so that you can be better at your job. Always learning - that's why I love my career.

Great distraction from the migraine when you get really involved in an issue that's technical and you have to research and think it through. Same with the FBARs with all the hubbub right now with the IRS having teleconferences where they change the rules in the middle of the game and you are consulting with people on how to deal with what's what.

My head hurt a lot today and more now that I have stopped working. I get migraines from let down of stress. Another trigger. But I am proud of the work I did and now will deal with my head - calming it back down. Tomorrow I get my migraine massage!

My history and health treatments

2009-06-25T11:07:00.002-05:00

I started having migraines in my early teens - had them about 4 times a year until my twenties. By my mid20s I was having attacks at least once a month and generally around my cycle. By the time I hit my 30s I was having them at least 2x a month and a little in to my 30s at least 3x a month. By my 35th birthday I was having attacks at least 4-5x a month. And then as of January 2008 - constant - but the pain changes from moderate to severe.
I've always had indicators - ears ringing, gray spots growing to block out vision in one eye, or sparkly lights before the pain started. Now that it's constant, I get those indicators when it's about to get a lot worse.
Before they were constant they lasted from 3 days to 2 weeks.
So, early on I did nothing but deal with the pain, hole up and use ice and try to get through it. When they got to be monthly, since near my cycle we (drs and I) tried high doses of aleve around the time the pain was going to start and heavier meds - like stadol - when it got severe. Once they got more often, I started down the path of all of the imitrex type meds - they would work at first, but eventually wouldn't work at all, I would have to be switched to a new one - Relpax, Maxalt, Frova, Imitrex, etc - about once a year or longer when they stopped working. The new one would work for a year or less and then stop working. This with my regular doctor before I saw a neurologist.
Then, I went to the nuerologist. All kinds of tests were run, we tried a lot of different preventative meds - some with some success and others not - nortryptaline, topamax (read dopamax cause you get stupid on it), visteral, nameda, propanolol (lowered my blood pressure too much) etc. For attacks, I used axert and imitrex. I went in for shots when it was really bad, worked the first time, didn't the second, third time they added something else to the shot and it worked, fourth time, didn't work so we gave up on the shots.
Then came in the insurance company and cut my supply of imitrex, et al to only 4 pills a month. Well that became the beginning of the end. I was forced to have migraines that went untreated. Which allowed the migraine to settle in. (They say it takes 3X the amount of meds to get you out of pain once it's imbedded then if you take meds at the start of the pain!) To prepare for my wedding I went on the week before a dosage of steroids every day plus Frova - got through my wedding great and most of my honeymoon but not all of it.
Then came the constant pain - the one that hasn't ended. We tried the things I stated before and then went to another specialist neuroligist that works with my neurologist - who also has a migraine specialty - the new specialist put me on IV treatments - 4 days each time and we did it twice. The IV treatment would reduce the pain, but it came back every night or by morning when I woke up.
So, next we went to hospitalization here in KC. Constant IV - DHT, steroids, pressure point injections, a lumbar puncture, more scans of my head and neck and I don't remember the rest of it. It didn't work. They did find vasospasms in my brain and a small blockage in my neck. With that I was put on Verapamil for the vasospasms and went off all imitrex type meds.
So, next I was referred to either the Diamond Clinic in Chicago or Michigan Head Pain & Neurological Institute. I went to MHNI - they had success and taught me a lot. Went through many, many more tests. I had neck nerve blocks twice which worked for a day and then pain came back. I was there 3 weeks and they tried various meds and combinations for preventative and abortive until we found a mixture that reduced my pain. I left with a 1-2 on a 10 scale and kept that for about six weeks until I went back to work and my life and then the pain went back to where it was before - staying between 6-8 with jumps to 10s. My doctors here have continued to modify my mixture of meds seeing what works best as preventative and abortive. I also had more pressure point injections, another nerve block and then a nerve burning (not the technical term but was supposed to last up to six months - it didn't work).
I now also see a massage therapist once a week who does a migraine head massage only for about an hour which gives me relief during the massage but pain comes back within hours and never is fully gone. I also see an acupuncturist who has been able to really reduce the pain for a couple of days after treatment but then pain comes back.
My neurologist was concerned I wasn't sleeping right even though I was sleeping a lot - not getting to deep restorative sleep because pain continued while I slept and I started having more episodes of "Sleep Paralysis with Hallucinations" something I'd also had since a teenager which get worse and more often in times of stress. But, I never connected them to migraines. Turns out they are a symptom of migraine with aura as well as a potential symptom of narcolepsy.
So, I was referred to a sleep specialist with a migraine background - worked at MHNI for 5 years - and I did a sleep study (tortorous) and came back with a diagnosis of narcolepsy for which I am now on Provigil - it's been 3 weeks of that.

Other medical conditions my team has to muddle through along with migraines: 1 - hypothyroidism severe - was not diagnosed until my 20s because I've always been thin and they didn't think of it until I was put into a mental ward for depression - it was regulated fine from 25 - 36 and since then has been acting up and I just had another blood test - normal and regulated 6 months ago, but is back out of whack and they have to increase my synthroid again now - that will start next week. 2 - vasovagal syncope - my heart is "allergic" to adrenaline - if I get too much adrenaline pumping due to nervousness or pain or whatever, my blood pressure drops to almost nothing and I pass out and go into convulsions but come to within 20 seconds and after 20 minutes am back regulated again and ok but tired for awhile after. 3 - familial tremor - my hands shake and sometimes arms and legs but my mom has this too and they say may get worse. I was being treated for it but lowered my BP too much so we are ignoring it for now and focusing on migraines. 4 - low blood pressure - apparently common amoung migraine sufferers. 5 - anxiety attacks. 6 - I know I'm forgetting something and 7 - now possibly narcolepsy although maybe not but the provigel should help anyway with my sleep patterns and seems to be working and not harmful - I haven't had an episode of sleep paralysis since taking it so less scared to sleep at night and less tired.
Meds I'm currently on
Synthroid; visteral; verapamil; keppra; chlonepen; baclofen; thorazine; skelaxin; provigil; toradol shots - not all every day some just as abortives. yes, I've tried indomecithin (sp) and it didn't work.
Herbs/vitamins/supplements
CoQ10, magnesium, D1000, calcium, mutlivitamin, Bcomplex and B12 shots once a month, as well as Rice Sprout now which has natural CoQ10 and Bs that are easier to digest.

That's the most of it although I'm sure I've left things out inadvertently.

Hanging in there and my team of doctors and therapists are vowed never to give up on me which helps - I'll never hit a point with them where they say they give up and there's nothing else to do. I am very lucky to have the doctors I have. I also see a therapist once a week to deal with chronic pain management.

This Too Shall Pass - Hope Springs Eternal
Elizabeth

Migraine +++ and onset signals and hope at last

2009-06-24T15:58:00.003-05:00

Today was a very bad day for my head. On a scale 1-10 I went from a 7 on Saturday, 8 on Sunday, Monday 10, Tuesday 10, today 20 - I guess I overestimated the other days and have to rethink them cause today I hit the top of the pain scale. So, I guess it was Sat 6, Sun 7, Mon 9, Tues 9 and today 10.
It got so bad that I lost sight in my left eye - the side the migraine likes to sit on - which has happened before and is just a precursor to the amount of pain that is coming down on me. Sometimes it's my ears - I have tinitus (ringing in the ears) most all the time now that the migraine is constant - before only when I had a migraine. But, when the volume increases dramatically, another sign that the pain is about to be unbearable. Besides the blindness (really gray spots that grow to block out my vision in one eye) and the tinitus, I get other clues like seeing sparkly lights for about 20 minutes before massive pain kicks in.
Anyhow, I got depressed and lost sight of the big picture. Started saying things like "I know I'm dying this time" which I've said before (ask my husband) and aren't true. I try not to say that but then I almost can't keep from saying it because it seems so true THIS time. I rethink the constant migraine as not being so bad - at least it isn't this bad all the time or I wouldn't make it.
I've been in and out of hospitals and have a good network of medical staff and family and friends to help keep me grounded and hopeful, but I lost sight of that today.
An article and the quote at the end of the article really helped. http://bit.ly/le8kg - the quote at the end from Helen Keller “All the world is full of suffering. It is also full of overcoming” I repeated over and over and over to myself along with my usual from my Grandmother - "This Too Shall Pass." Thanks to Jeanne for sending me that tweet.

I feel more hopeful again, but am worried when the medication eases up if I don't take more that it will get bad again. I need all the support I have and can get.

I'm back to my positive self and am lucky for the friends and family I have as well as all my doctors and also to my job that is so understanding. You know there are a lot of jobs that wouldn't be as understanding and don't bother to learn about migraines and put you in a category of sickly or whatever. I get to take some of the credit - I am very good at my job - I'm a tax CPA specializing in international tax, FAS109, and highly technical transaction issues. So, I am an asset and they know it. They need me so were open to listening to my migraine story and open to supporting me. I know others are not as fortunate and I have heard rumors at work from people that don't me - the whispers of is she hungover, why's she wearing sunglasses, does she shake cause she's on something, etc. - luckily my bosses understand and don't listen to these because they have listened to me and heard from my doctors who were good enough to explain my condition to them in a letter.

So, I have much to feel grateful for and to feel proud about. I like me - which is a good thing because I'm going to be around my whole life.

CO Q10 and migraines

2009-06-23T16:42:00.002-05:00

I've been on Co Q10 as a supplement to help my migraines along with magnesium. I'm on high doses, but learned something from my acupuncturist. Rice Sprout - has natural CoQ10 so it's easier for your body to digest as well as all the vitamin B's which migrainers often are low in - at least those I've met - but you can only get supplements for a few of the B's not all of them.

I get my Rice Sprout from my acupuncturists office but I'm sure you can get it other places. One heaping tablespoon in about 4-6 oz of water put it in a water bottle so you can shake it up. Tastes like rice milk - which if you are a vegetarian like me you may have tasted before. I used to and sometimes still do have rice for breakfast like oatmeal - rice with milk and a little sugar in a bowl - it tastes like that - pretty good, but you can put it in a smoothie if you don't like the taste.

I still take the supplement pills, but like that I have a natural way to get it that my body more easily absorbs.

The confusion migraine

2009-06-23T16:03:00.003-05:00

Pain is bad again today. I took a Toradol shot yesterday so need to wait and not take another today or I won't have for later in the week since I can only take 2 a week.
I think sometimes part of my problem is that I wait to take meds until the pain is so bad the meds don't work as well. I guess I think this because doctors keep telling me I do that and it takes 3X the normal amount of medication if you wait for the pain to get full blown. But, I keep thinking to myself - don't waste it you may need it later - and I don't want to be overmedicated.

Anyhow - not the purpose of today's blog. I wanted to talk about the other side of migraines, besides the pain. The confusion, inability to concentrate and feeling unable to get motivated. I think these are overlooked sometimes as a reaction to the pain. But, studies show that you can have these migraine symptoms without the pain and it's still a migraine. Yes, I'm in a lot of pain today but I was yesterday and still got a lot of work done. Today, I have the lack of concentration, lack of motivation and confustion that makes it hard to force concentration and keep working. So, then it's harder to ignore the pain.

All of these symptoms can happen like I said without the pain or without the high level of pain and I think people have a hard time with this. Non-migrainers have a hard time understanding and you are often thought to just be lazy or hungover - well let me tell you I have not been drinking! Migrainers think it's just them, they are depressed from the pain or tired from it going on all the time. But, it is a symptom in and of itself. I may be tired of the pain or depressed about it but the lack of being able to concentrate or being confused by simple things is not the normal me - that's the migraine affecting my brain.

It helps to know that it isn't just me because knowing it isn't me - that I'm feeling lazy today - means I don't have to feel badly about it - I am sick, I have a disorder and I'm having symptoms from that. I don't have to get down on myself and say "Hey, stop it and get motivated!" I can say I'm having a bad migraine confusion day or however long and be honest with those around me and my ability to be effective. I know I'll need to review any work I did today tomorrow or when I feel better for mistakes or miscommunications. It's not that I'm not strong enough, it's that I have a disorder that's acting up - having an episode which is usually how I describe it. And I can tell others that I'm in that state so they don't over expect things from me. And I can not be hard on myself and tell myself that it will be better another day and to relax and flow with it. Getting upset just makes things worse.

I didn't get much done today for work. I know why and it's a valid reason - not laziness. I will be better and do better tomorrow so I'm going to take the cue and do less today and meditate more and do things that take less concentration to take my mind off the pain.

Don't be hard on yourself if you are a migrainer, do what you can and know your limits.

2009-06-22T18:33:00.003-05:00

I got a lot of work done today but I don't know how. Might have to redo some tomorrow. It's amazing how a brain can still work when it's in so much pain. I think after so long of being in pain you can put it aside to do what you have to do even though you still feel it and then when you're done it comes back to you consciously and you feel all that much worse. But, thank heavens for being able to still function.

I worked on the FAS109 training I'll be teaching in July and worked on a lot of foreign tax issues for others at work - answering a lot of questions. I really enjoy both of these aspects of my job. I am so lucky to be able to work from home because the pain seems unbearable.

It always makes my head hurt even worse when I take a shower when it's this bad but I feel it can't get much worse and now that I'm done with work, I'll do that - take a shower - and it will be worse and then I'll take my strong medicine and meditate and relax and try to flow with the pain.

I have degrees of meds I take, 1 those that I take as preventatives for migraines - which if they do work and I know they do then without I'd be screaming all the time and taking my head off which is where I was last year, 2 those I take when the pain starts creeping up on me and starting to get worse - not so strong that you'd notice a change in me, mostly muscle relaxant and visteral to open the blood vessels, 3 those I take when I need more pain relief - heavier meds and 4, the toradol shot - which I can only take twice a week but is the only thing that consistently brings the pain down so I am careful to only take it when absolutely necessary.

I don't take any of the normal migraine meds anymore after years with doctors and tests - no more imitrex and the like - they didn't work anyway very well for me and the doctors found I have some vasospasms (for which I take Verapamil) so they don't want me on anything that constricts my blood vessels. So, I'm on nothing which causes rebound headaches at least. Not that I'd notice since the pain has been continuous for so long now.

Anyhow - all that said and vented, I'm off to my shower and then to the Toradol shot because I need it now and the shower will make it worse so might as well do that first.

I am proud of myself for getting some good work accomplished today and happy and grateful that my husband is home in case I fall or pass out - which happens from time to time with the pain.

More later - keeping the faith that pain is not who I am!

2009-06-21T14:46:00.003-05:00

Migraine is bad today - missed my father-in-law's lunch. Going to take a shot of toradol, do some meditation and yoga and listen to music. Don't know why today, weather's okay and my diets fine. My brain is just wired wrong. At least I'm smart - maybe the two go hand in hand. If your an overthinker like me and heredity gave you that it may also have given you the pain along with it. Good with the bad. This Too Shall Pass.
Called my mom this morning to wish her happy father's day since she did the raising of us kids as a mom and a dad.
Part of my meditation is not fighting the pain but just letting it flow through me and flow with it. Need my medication to help me get to that point of being able to meditate. Right now, I think the movie Pi where the guy with the outrageous migraines took a drill to his head sounds about right, but I need to not think down that path and try to relax and flow with it.

2009-06-21T10:58:00.003-05:00

Father's Day - I wish I had a relationship with my dad, but I don't. Many reasons, not the least of which is that he doesn't believe in my disease of migraines. I learned at the Michigan Head Pain and Neurological institute (www.mhni.com) when I spent three weeks there last summer that it truly is a disease and to think of it that way. I don't get migraines for no reason. They don't come upon me because I'm depressed or because I'm tired or because I want them. They aren't just in my head. Well, they are but you get my meaning. My dad doesn't believe in them - doesn't believe I'm really sick. But that's just one reason we don't talk. I had problems when I was young causing depression and hallucinations and he thought that was all in my head too. Then I was diagnosed with hypothyroidism and as they regulated my thyroid those problems went away too. So, it was real. I'd stopped talking to my dad at that point - or more precisely he'd stopped talking to me. I love my dad very much and miss him, but he isn't a part of my life and something I have to get used to. I still cry at movies with dads and daughters or dads and sons or at weddings during the father/daughter dance as a longing for something I don't have. But I have a strong family on my mom's side of the family and am still close to my dad's relatives - my grandparents and aunts and uncles. I've just lost him and it's sad but not the end of the world.
I have to think the same about my migraines - they are there but not the end of the world. Sometimes so bad I wish it was the end but that's the wrong way of looking at it - they haven't taken everything from me and I can live a good life - not the one I thought I'd have, but one after all. I meditate and try to let the pain just flow through me, not fighting it but floating above it and letting it just be. Not always easy but it helps. I distract myself by doing things that I can do and laugh as often as I can. I take my preventative medicine and I take medicine when the pain increases to a level where I need more. I learn to live. I take herbs and vitamins and acupunture and migraine massages. Trying to retrain my body that the pain doesn't have to live there all the time. I avoid triggers and live my life in spite of the pain. I have a good life. A great job and a perfect husband. Two beautiful, smart and wonderful boys who love their mom.
I have my friends - a network of people who believe in and support me. I have a team of doctors that truly care and won't give up on me.
I have a lot, but I don't have my dad.

2009-06-20T18:21:00.002-05:00

I am trying every method - regular and alternative medicine - to deal with my migraines. I have a great team behind me now not one of which is willing to give up on me and I don't know what I would do without them. I have my neurologist, general practicioner, sleep doctor, therapist, accupuncurist and massage therapist. Everyone communicates with each other and everyone's goal is the same - help me with my pain. I take medications, hormone (synthroid because I'm HypoThyroid), vitamins and herbs, rice sprout, essential oils, meditation and yoga. I need it all on my path.
Then I have my wonderful Husband, Rod, who takes the best care of me. I wouldn't make it without him. It makes me cry to understand how much he loves me and so grateful for how well he takes care of me.
I have my job, I'm the primary bread winner in the family, as a tax CPA which is very difficult and stressful, but takes my mind off of things and my new role due to my migraines as being a consultant on international and specialty tax subjects, teaching and working in the national tax office, lets me work from home - my cave - where I can best care for my head. I have nothing to complain about and yet I do - the pain - what would the world be like without it? I'll never know.

2009-06-20T18:16:00.002-05:00

I had two things to do today - go to my nieces dance recital and go to my mom's dart tournament. It's raining on and off which is bad for my migraine and I started out this morning not doing too well. I try to be careful now making plans and everyone knows I may have to back out at the last minute. I'm happy to say I made it to Gillian's recital - was good once it started, in the hallway before hand there were lots of perfumes and flowers upsetting my migraine - to the end I did pretty good and then there were swirly backgrounds that got the beast in my head going again. I did not make it to my mom's dart tournament. I needed to go home and rest and take meds. I also use essential oils - see www.youngliving.com - their MGrain is excellent and relaxes my head some which is good - I hate relying only on meds.

2009-06-20T18:05:00.002-05:00

As you can see by my profile, I have suffered migraines since my teens. They got more and more often as I got older. They last 3-5 days and sometimes 2 weeks. Then, January 2008 - 18 months ago, I got one that hasn't ended yet. It ebbs and flows sometimes so bad I can't see or hear, most times with all my meds, I can function - not like I used to but I can function. My job has been good to me over it - not all employers are. I went to the Michigan Head Pain and Neurological Institute last summer and learned so much and when I left my pain was at a decent, livable level. But life back at home increased it back - now I go day to day trying to get along and enjoy life and not let the migraine get the best of me.