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 www.invisibleillness.com

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

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

14 comments:

  1. Sympathize on the sleep issue:

    Sometimes I yearn for restful sleep, but it seems to elude me - sleep that is not restful, or no sleep at all....

    Thank you for sharing!

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  2. Very informative. I also have some invisible illnesses and plan to *steal* your idea of listing things about it. I hope you dont mind.

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  3. Thank you for the comments -
    It's nice to know I'm not alone on the sleep issue - even when I sleep a long time, through my sleep study I learned that I'm not getting restful sleep so working on that.
    Denise - I think you should - the list is on the invisible illness week website where you can copy and paste the questions and respond, they want as many bloggers to do it as can.
    It felt good to share.

    Elizabeth

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  4. I'm sorry you're in so much pain, I only get migraines about once a month but they can take me out for days. I can't imagine having them constantly, you're way stronger than I am!
    Love your blog, I'm following.

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  5. Elizabeth,

    There were so many "30 memes" for II week that I was too exhausted to comment on them the way I wanted to. Still am. However, I wanted to pop over and say hello and thank you for all of your outstanding twitter friendship! :)

    Jeanne

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  6. Elizabeth -
    Very moving and helps me to remember to live within my limitations too. Since my pain is not constant, but "only" frequent, I can so often go back to fooling myself into doing too much and expecting too much. Thanks for reminding me about balance!
    - Megan

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  7. I found your blog from Chrissy's - I figured I had to check out another migraineur's blog!

    And literally (minus the CPA info) I could have written your list. Mine has lasted 5 years, but I know exactly how you feel. All pain, all the time.

    But reading your hypothroidism list was really interesting, I didn't know very much about it before today. Thank you for that. I'll be following your blog, for sure. :)

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  8. Thank you for comments - sorry I've been away - work and pain you know.
    Alice - you are strong - anyone is that deals with this pain, even if it isn't constant.
    Jeanne - thank you always for your support and comments.
    Megan - you are an inspiration to me and you are right, I too, if feeling better, take it too far and have a backlash. It's hard not to do, retrain yourself. Balance is important and a constant lesson.
    Emily - glad to hear from you. I am so sorry to hear about your pain, it's nice to know there are others out there and I'm not alone, but it's also sad at the same time. Glad I could spread some knowledge about hypothyroidism too - it's overlooked too often I think. For me it was overlooked for too long because I didn't show "normal" signs of being overweight so went years without treatment even though I had all the other symptoms. Instead I was put on all kinds of anti-depression drugs and sent to psychiatrists. It actually took a routine test from a hospitalization to discover it and the discovery was the worst case the KU Med Center teaching hospital had ever seen. So, I endured many students touching my neck and talking to me. Hopefully they learned something.

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  9. Elizabeth,

    I hope things are going well with the stress you are dealing with and I just wanted to let you know that I'm thinking of you!

    Jeanne

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  10. Elizabeth,

    Thinking of you!!

    Jeanne

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  11. Hi, well be sensible, well-all described

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  12. cialis - thank you. I should do one for each of my chronic illnesses but in 2009 and a lot of 2010 I was focused that it was my migraine and hypothyroidism causing all the problems which isn't fair and I know now isn't true. For one, my Essential Tremor (although still constant migraine) has gotten way out of control. Thank you for the comment!

    Elizabeth

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  13. I fully recommend bovine thyroid supplement for balancing out your thyroid problems. It may not work 100 percent, but it has a great track record to show for itself.

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