Wednesday, September 12, 2012

NICIAW - Fibromyalgia, Meniere's Disease

Izebell writes:

1. The illness I live with is:
PTSD, Fibromyalgia, Meniere's Disease, Tinnitus, Joint Hypermobility, Carpal Tunnel, Arm/hand nerve impingement, DDNOS, chondromalacia

2. I was diagnosed with it in the year:
Meniere's, tinnitus - 1995
Fibromyalgia - 2000
PTSD - 2005, 2006, 2011 (different docs)
the rest 2012
Chondromalacia - 1979

3. But I had symptoms since:
Fibro - Not sure
PTSD - 1970
Meniere's/tinnitus - 1995
Joint stuff - 1974
Carpal tunnel/nerve issues - 2006
DDNOS - 1976 (not really sure)
Chondromalacia - 1973

4. The biggest adjustment I’ve had to make is:
Giving up the things I enjoy doing and making sure I have a few days of rest built in after a busy day.

5. Most people assume:
That I am either just fine or complain a lot

6. The hardest part about mornings are:
Waking still feeling exhausted

7. My favorite medical TV show is:
Untold Stories of the ER

8. A gadget I couldn’t live without is:
My braces

9. The hardest part about nights are:
Not sleeping and being too exhausted to interact with My Beloved. There's nothing left for him.

10. Each day I take __ pills & vitamins. (No comments, please)
8 RX and 6 vitamins

11. Regarding alternative treatments I:
I have tried herbs, chiropractic, massage therapy, acupuncture, diet

12. If I had to choose between an invisible illness or visible I would choose:
Visible as people can then see something wrong and are more willing to help out

13. Regarding working and career:
I am probably going to have to stop working soon as my hands can't do it any more. Because of the fibro, it takes about 2-3 times longer for me to heal from surgery and I am having my right hand/arm fixed later this year.

14. People would be surprised to know:
How many illnesses I have.

15. The hardest thing to accept about my new reality has been:
The loss of social interaction due to the inability to participate in my favorite hobby

16. Something I never thought I could do with my illness that I did was:
Go on almost all rides at Disneyland - Tower of Terror is the best! (the virtual reality ones are out, however)

17. The commercials about my illness:
Don't exist

18. Something I really miss doing since I was diagnosed is:
Bowling but my body just can't do it any more

19. It was really hard to have to give up:
Quilting as it kept me sane and brought me joy.

20. A new hobby I have taken up since my diagnosis is:
Haven't found it yet as most involve my hands

21. If I could have one day of feeling normal again I would:
Hike a local mountain - 4 miles up and I did it once

22. My illness has taught me:
That God is in control and my strength and support come from Him. All others will fail me.

23. Want to know a secret? One thing people say that gets under my skin is:
You just need to exercise

24. But I love it when people:
Say "You don't look it!" when I tell them my age. I also like hearing "I understand".

25. My favorite motto, scripture, quote that gets me through tough times is:
I can do all things through Christ who gives me strength." Phil. 4:13 My life verse

26. When someone is diagnosed I’d like to tell them:
It can get better and you won't always feel like this.

27. Something that has surprised me about living with an illness is:
That pain is just a part of life and it's usually in the background except right now.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Bring us meals

29. I’m involved with Invisible Illness Week because:
Millions of people suffer and the public needs to be educated so they will stop saying stupid stuff.

30. The fact that you read this list makes me feel:
Validated

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