Sunday, September 19, 2010
Invisible Illness Week 2010
In recognition of Invisible Illness Week:
1. The illness I live with is: Chronic Headache and Occipital Neuralgia (I still am unsure of exactly what kind of Headache I suffer from). Possibly something autoimmune. Still investigating!
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: I suffered my first Migraine with Aura in 2003 during the pregnancy of my second son. My Headache became chronic 2 years ago. My rhematoid factor has been positive since 2008.
4. The biggest adjustment I’ve had to make is: Socialization. I have become quite isolated.
5. Most people assume: That the more I do, the more I'll want to do. What people don't realize is the more I do, the more pain I am in, which leaves me even more drained.
6. The hardest part about mornings is: Getting up. I have severe muscle spasms and stiffness, especially in the mornings.
7. My favorite medical TV show is: Mystery Diagnosis. I watch it hoping I will see someone with the same symptoms as me!
8. A gadget I couldn’t live without is: My cell phone.
9. The hardest part about nights is: Staying asleep.
10. Each day I take __ pills & vitamins: Depends on the day. Daily I take 3 preventatives and 3 supplements. Some days I take anti-inflammatories and rescue meds too. Overall...too many meds! I hate it and I am trying to eliminate some!
11. Regarding alternative treatments: I am a huge fan...especially of massage. I am about to try acupuncture again.
12. If I had to choose between an invisible illness or visible I would choose: Neither! But if I had to chose, I'd say invisible. I am too vain for a visible illness!
13. Regarding working and career: I still work full time in my career of choice, however it's a huge struggle. I have put my aspirations of getting my Master's degree on hold.
14. People would be surprised to know: That I am in pain EVERY day.
15. The hardest thing to accept about my new reality has been: Not being able to do everything I want to do. I need alot of downtime.
16. Something I never thought I could do with my illness that I did was: Stay at my job.
17. The commercials about my illness: Is a joke! Everyone who suffers from the pain I do knows that Excedrin Migraine is like eating a tic tac!
18. Something I really miss doing since I was diagnosed is: Going out and having fun!
19. It was really hard to have to give up: My social life.
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again, I would: Either go out dancing or go to an amusement park and actually ride the rides!
22. My illness has taught me: Alot! Understanding, compassion, limitations, strength...
23. One thing people say that gets under my skin is: Take a tylenol, or take a hot bath, or exercise more, or sleep more, or eat healthier....etc...etc...etc. People I have tried it all, and if it were that simple don't you think I'd already be doing it!!!
24. But I love it when people: Acknowledge the fact that what I suffer from is more than just an ordinary headache.
25. My favorite motto, scripture, quote that gets me through tough times is: One day at a time.
26. When someone is diagnosed I’d like to tell them: Honestly??? Oh shit...that sucks! Good luck finding a competant doctor and some relief. That's probably not the right answer, huh???
27. Something that has surprised me about living with an illness is: I have to go with Steph from Headwise on this one...my ability to adapt.
28. The nicest thing someone did for me when I wasn’t feeling well was: There are so many! My boyfriend has been a godsend. There isn't anything he would'nt or has'nt done for me.
29. I’m involved with Invisible Illness Week because: I want people to know there are alot of us out there!
30. The fact that you read this list makes me feel: Warm & fuzzy! =)
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3 comments:
Thanks for sharing. I definitely agree with what you said about things you've learned from your illness. I hope you're doing well. Blessings.
Thanks Jamie! Hope you are as well!
I call #13 the curse of the Masters Degree. I don't know how many of us there are that were interrupted mid-career, mid Masters....
Hoping that someday soon the magic combo will happen and your head will get better. I agree - it is very hard to get competent care when you have a zebra disease and all they think about are horses!
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