Saturday, September 12, 2009

30 Things About My Invisible Illness You May Not Know

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

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

Support National Invisible Chronic Illness Week - September 13 - 20

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

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

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

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

Saturday, September 5, 2009

I miss my life

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

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

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

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

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

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

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

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

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

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

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

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

Much love,


Sunday, August 23, 2009

Babysitting nephews

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

Don't want to put picture of kids out there for the internet, but these you can't see his face - my hubby (a great guitarist) letting nephew play the guitar - so cute!
It's the cheap guitar so he couldn't hurt it that I've had since I was 12 - not one of my husband's many expensive guitars.  He asked if he could try playing it with his foot - that answer, although a cheap guitar was still no.   His brother - 6 mo old was also so much fun!
Have to get back to work now and back to migraine - need to take a breathing and yoga break for that - but had to share the joy that I spent this morning that although in pain, I didn't care.  
I missed it.  My boys are 20 and 16 and I miss the days when they were young and we played on the floor and they explored with wonder.  Of course, my boys are the greatest gift to me and my heart, soul and joy.  But so are nephews!

Thursday, August 20, 2009

I Must Learn Self Control and Get Back to Me

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

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

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

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

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

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

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

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

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

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

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

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

This Too Shall Pass

Love to all,


Sunday, August 16, 2009

Is My Migraine Going To Be The Death Of Me?

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

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

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

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

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

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

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

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

This Too Shall Pass

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

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

Sunday, August 9, 2009

Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope

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

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

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

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

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

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

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

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

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

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

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

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


Saturday, July 25, 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

All the best wishes - This Too Shall Pass

Saturday, July 18, 2009

My conversation with my neurologist about healthcare

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

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

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

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

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

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

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

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

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

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

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

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

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

Take care all,


Sunday, July 12, 2009

Flow with the migraine pain

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, July 11, 2009

Another week of pain and accomplishments

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

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

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

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

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

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

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

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

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

Here's to living life and not living pain!

Sunday, July 5, 2009

Increased pain, Work going well

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

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

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

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

Thursday, July 2, 2009

Hypothyroidism, Increased migraine and thank you

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

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

Sunday, June 28, 2009

Bad Migraine Week - facial changes

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

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

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

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

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

Thursday, June 25, 2009

Work today - CPA stuff with migraine

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

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

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

My history and health treatments

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

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

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

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

This Too Shall Pass - Hope Springs Eternal

Wednesday, June 24, 2009

Migraine +++ and onset signals and hope at last

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

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

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

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

Tuesday, June 23, 2009

CO Q10 and migraines

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

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

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

The confusion migraine

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

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

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

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

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

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