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 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! =)


Jamie Valendy said...

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.

Jessica said...

Thanks Jamie! Hope you are as well!

WinnyNinny PooPoo said...

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!