Thursday, February 09, 2012

30 Things About My Invisible Illness (Migraine) You May Not Know

Well, here is my "meme" to celebrate National Invisible Chronic Illness Awareness Week, September 14-20, 2009. There are some things in here I didn't even realize. 

1. My illness list includes but is not limited to (LOL!): Migraines, intractable chronic head and neck pain (from mild traumatic brain injury), Idiopathic Intracranial Hypertension (IIH) and a few others... 

 

2. I was diagnosed with: Migraines, intractable chronic head/neck pain 1997, IIH in 2003.

 

3. But I had symptoms since: Over-the-counter (OTC) medications kept "headaches" in check until I fell on December 9, 1996.  

 

4. The biggest adjustment I've had to make is: My ability to multi-task, lack of concentration, dealing with chronic pain, and not being the same person I was before I fell.

 

5. Most people assume: "You can't possibly be in pain, you look fine." 

 

6. The hardest part about mornings are: Getting out of bed and starting the day. Having sore and stiff joints; chronic pain usually doesn't make me eager to start the day.

 

7. My favorite medical TV show is: Used to be "ER", now I love "Mystery Diagnosis".

 

8. A gadget I couldn't live without is: Well, I guess I could live without it, but I would miss my new little phone.

 

9. The hardest part about nights are: Staying asleep, and not waking up once every few hours in pain. 

 

10. Each day I take 3 supplements, 8 pills, Migraine abortive and rescues when needed.

 

11. Regarding alternative treatments: I'm all about alternative treatments, they are great for relaxation and meditation.  For me - not so much on the Migraine reduction front. 

 

12. If I had to choose between an invisible illness or visible I would choose: Neither.

 

13. Regarding working and career: My invisible illness has pretty much put my career choice on a totally different path. Certainly not the one I was trained for, but one I wouldn't trade anything for. 

 

14. People would be surprised to know: I teach piano lessons and was a Music Business major.

 

15. The hardest thing to accept about my new reality is: not being who I was.

 

16. Something I never thought I could do with my illness that I did was: Learning to help others by becoming an educated Migraine patient myself. I am very lucky to be able to help others learn about Migraines and headache disorders so they can work with their doctors to form a great health care team together.

 

17. The commercials about my illness: I hate.

 

18. Something I really miss doing since I was diagnosed is: Not being able to laugh without getting a headache.

 

19. It was really hard to have to give up: My marriage, (but I'm ok now!) and not being the awesome multi-tasker I was!!

 

20. A new hobby I have taken up since my diagnosis is: Ummm, do I have a new hobby since I fell? 

 

21. If I could have one day of feeling normal again I would: Go to the symphony, have a five-star dinner, then stay up all night talking with friends and not have to pay the price for days on end.

 

22. My illness has taught me: That my strength and loyalty are two of my best qualities. 

 

23. One thing people say that gets under my skin is: "Must be nice to stay home all day."

 

24. But I love it when people: Actually ask me about Migraine disease, something I know and enjoy talking about.

 

25. My favorite motto, scripture, quote that gets me through tough times is: "Lord, grant me the serenity..." 

 

26. When someone is diagnosed I like to tell them: I understand. and you are not alone."

 

27. Something that has surprised me about living with an illness is: how much emotional damage a chronic illness may inflict upon family members. 

 

28. The nicest thing someone did for me when I wasn't feeling well was: My friend Gisele basically handled my life for me when I needed it.

 

29. I'm involved with Invisible Illness Week because: No one wants to be invisible. 

 

30. The fact that you read this list makes me feel: helpful, happy, and productive.

Feel free to copy and paste the questions, then change the answers, and post this to your blog or a sharepost. That way it makes it easier, and we can keep it going.

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