Dealing with constant pain and then certain doctors who refuse to try to help

 Okay, it is difficult for me to talk about these things. So bear with me...

First, my neurologist and staff are wonderful and never give up on me, but I have found out now that isn't true for all doctors who are supposed to help people in pain.

Back in May of 2022, my neurologist referred me to a neurosurgeon who works for The Center for the Relief of Pain. 

Quick backstory, since my chronic migraines became constant in January 2008, my neurologist and staff have done many things, hospitalizations, specialized clinics, and always look out for what is new coming through the FDA to help me.  Problem is that either a treatment or medication doesn't work or stops working because my body gets immune to it. So they work to look for new things that are being researched and approved.

I was on Vyepti, IV treatments 300mg every 3 months, which helped at first to get me back reading, and lowered my general pain level from 6-7/10 to 5/10 but with spikes as usual.  However, my body was getting used to the treatments and the help lasted less and less often.  This was after a long list of treatments that I had tried.

Anyway, so I was referred to the neurosurgeon for a surgery trial and then if worked, implant to help with pain and lower it.  After over a year of jumping through hoops that the neurosurgeon needed me to do, this last August at the beginning, the surgical nurse said that she was ready to schedule my trial surgery but wanted me to see the doctor one more time first.  Later in August, I went with my mom and sister to the doctor and he came in and talked to me about my migraine.  

Then he said that my migraine was TOO SEVERE and TOO PERSISTENT to do the surgery and that he wouldn't even do the trial to see if it would work.  As I sat there crying, and my mom and sister and I begged him to at least do the trial to see if it might work, he said no, and then said that we could use the room to cry in for as long as I needed to because the next patient wasn't going to be there for awhile and he walked out. My Mom got up and said, we aren't staying here, and we left.  My neurologist was shocked that a doctor who works at the Center for the Relief of Pain wouldn't help me at all in any way and would treat me like that, after over a year of jumping through hoops.

I am blessed that my neurologist and staff still refuse to give up and have moved me to first Qulipta for a few months, which didn't work at all, and now to Emgality. AND have increased the number of nerve blocks and have referred me to a new pain doctor to try something else.  I feel so grateful and blessed to have them.  And to have my Migraine Massage Therapist, it only helps reduce pain for an hour, but an hour is better than nothing.  I had been blessed to have a wonderful acupuncturist, however, he cannot see me anymore as he is close to retiring.  I am going to go back to an ART specialist that I saw before, but stopped for financial reasons, and am really looking forward to see him again.

Also, the other thing difficult to talk about but should help to do so is that last April my brother almost died and we were in fear for about 10 days.  He is doing so much better now.  But my pain level is off the chart.  A huge trigger for me is not just stress, but more so the let-down from stress.  I have not been able to get below an average of 8/10 since April, so I had been really counting on the neurosurgeon and when he said no, I am staying at a high level of pain.  I could sort of function with a 5-6/10 level of pain after so many years, but this is so bad that I need a break.

Thank you to those doctors who won't give up on me!

Been SO long - the Migraine Story

 I have not posted on my blog since 2011.  I started out in my teen years to mid-twenties with migraines 4-6 times a year.  Really bad and lasting for almost a week but I got by.  I had other chronic illnesses that were more at my top to deal with.  I have Hypothyroidism and NCS (neurocardiogenic syncope).  

My thyroid wasn't working at all - and I kept being miss-diagnosed with mental issues - bi-polar, etc. It was a long path that after two suicide attempts and many problems of me hallucinating, etc., led to my Mother and sister putting me in a Psych-Ward against my will at age 23.  No one ever checked my blood-work for thyroid issues and I dropped so much weight I was down to 80 pounds at one point.

My NCS causes me to pass out - it also had not been diagnosed at that time, just pushed to the side.

I was angry with my Mother and sister at the time for having me committed.  BUT - it turned out in my favor.  I was considered at-risk so was being watched 24/7 and in the line for lunch I had an NCS episode and passed out.  By the time they woke me and got me into a wheelchair and then took my blood pressure it was 60/40 meaning it had been a lot lower when I passed out.

The doctors' got concerned and moved me to telemetry where my life was saved.  Telemetry did a full blood screen and found my hypothyroidism.  Apparently I was so bad they said they didn't know why I wasn't in a coma or worse.  It was the worst case the hospital had ever seen.

Most people with hypothyroidism gain weight and have high blood pressure.  I was underweight and always and still have low blood pressure.  Which happens in about 10% of patients but still wasn't a good enough reason to be miss-diagnosed for 5 years!

My hypothyroidism finally being treated and all the mental issues went away.  Except for my Anxiety Disorder and Attacks which I still have and make migraine worse. We still had to deal with why I passed out.  After tests - it was NCS - there are many kinds of syncope - NCS is where when your adrenaline is pumping (normally your blood pressure increases) my blood pressure drops down to about nothing and I pass out.  I had an entry in here more about my NCS.  Anyway, your body corrects itself and you are back but not great.  It can also cause what might look like seizure movements but are not.  

So, we are dealing with all this and then I start having migraines even more often 1-2 a month from mid-twenties to early thirties.  And some that last up to 2 weeks.  But I am a single mother, finishing college, while working full-time,, and then off to my career.  I was always a go-getter, mostly because when I didn't have a migraine, I felt I needed to do as much as possible before another came along (I Know I was likely causing more by doing this but I had so much work and family.  And I loved my boys, of course, and I really loved my job.

Now during this time I am having tremors, which my Mom has too, and turns out to be Essential Tremors or Familial Tremors by another name.  Supposed to be mild until much older.  Unless you start having chronic and then constant migraines which jumped my tremors into overdrive.

Early thirties to late thirties I begin to have chronic migraines - I begin to have trouble telling where one migraine ends and the next begins.  When I am semi-pain free I work as hard as I can.  I am even working through migraine pain as much as I can.  I keep lights in my office off and avoid conference room meetings. And I learn to fake not being in pain fairly well, even though I want to crawl into a cave.  One Partner in my firm, I could never fool, she could see slight swelling around my eye and forehead.

In 2008, I go on short term disability and spend most of that time in the hospital here in KC.  Then I go to MHNI (Michigan Head and Neurological Institute) and am in that hospital for 3 weeks.  See in January of 2008 I got a migraine and it never went away.  They managed to get my pain down to a 2-3 on a 10 scale and told me I could slowly go back to work but then only work 40 hours a week.  (I was a CPA and when I went to 40 hours a week, they cut my salary.  Odd, I know, but they did, even though I did still keep working about 50 - 60 hours a week.  This worked out until my pain got more and more with one partner (I changed to working directly with clients to being the international an state advisor to the Partners and Managers with clients with these issues.  And I did on-line training.  So I was working not directly for the one partner who I found out had been taking credit for years for my ideas and work.  And once I was out from under her, others discovered my talents and caught on - and would double check with me what she had told them on her own which at times was wrong.) So the more she as a Partner put pressure on me, the more my head could not stay at 2-3 and got worse and worse and worse.

By 2010, I went on full-time disability. and then things only got worse from there.  By 2011, I had too much trouble with the looking at computer screen, thus, I could not keep up with my blog or keep up with the migraine and chronic illness on-line communities I was a part of.  

Then came an inability to even read!  I used to read 20-30 books a year and dropped to none.  My wonderful husband and his family continued to buy me books I like so I wouldn't give up hope. I can't thank them enough.  I refused to do listen to books because I just have a way of hearing characters myself and didn't want someone to change that.

My neurologist and her physician's assistant never gave up hope.  I would never be without a pain, but to reduce it as much or for as long as possible was always the goal.  They sign me up of call new prescriptions without even telling me because as soon as they were on the market for them it was Go-time.  After so long they never would let me give up hope that at least I could get back to reading and computer.  

By the way, I have vasospasms so I can't take any kind of triptans.  

Aimovig after a few months I was reading! I was thrilled. Still horrible pain but READING!!! in small bursts because too much caused migraine to explode to ionosphere.  

Then this year Vplexy, - off Aimovig - Vplexy is the newest treatment - an IV treatment every three months. And here I am updating my blog.  I still have tons of pain but I am HERE!!! I did not DISAPPEAR!!!

 So this is my story or some of it anyway - there is the loss of friends and family who don't understand, and pain continues to haunt my life but I am trying, and that is something to celebrate.

A Therapist Who TRULY CARES!!!

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

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!

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....

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

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...

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

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

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

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!!!

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

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

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

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