Tuesday, November 17, 2009

Things About My Invisible Illness(es) You May Not Know

I found this and thought it was interesting.

Things About My Invisible Illness(es) You May Not Know

1. The illness(es) I live with: Interstitial cystitis, Chronic Pelvic Pain, antiphospholipid syndrome; AKA APS or sticky blood, a connective tissue disease similar to lupus and RA. And several others that keep popping up. All are autoimmune which means my immune system is hyper active and is attacking healthy tissue in my body.

2. I was diagnosed with it in the year: most were diagnosed within the last 6 months

3. But I had symptoms since: for as long as I can remember

4. The biggest adjustment I’ve had to make is: remembering to take all my meds and to stop when it hurts.

5. Most people assume: I am just fine or faking it.

6. The hardest part about mornings are: getting out of bed.

7. My favorite medical TV show is: Mystery Diagnosis

8. A gadget I couldn’t live without is: my computer & BlackBerry

9. The hardest part about nights are: not being able to sleep because I can't get comfortable and waking up several times because of pain.

10. Each day I take _about 20?_ pills & vitamins.

11. Regarding alternative treatments I: if I had the extra money I'd try anything to feel better. And I'd do the same for Jordan.

12. If I had to choose between an invisible illness or visible I would choose: invisible

13. Regarding working and career: not sure if I could go back to work at this point.

14. People would be surprised to know: I feel alone often.

15. The hardest thing to accept about my new reality has been: this is it. This is my life now.

16. Something I never thought I could do with my illness that I did was: ?????

17. The commercials about my illness: I've never seen one for any of the diseases I have.

18. Something I really miss doing since I was diagnosed is: walking without some degree of pain, but this has been going on for years and years.

19. It was really hard to have to give up: being in control of everything

20. A new hobby I have taken up since my diagnosis is: nothing so far!

21. If I could have one day of feeling normal again I would: spend it playing with the family.

22. My illness has taught me: to let God take control of my life.

23. Want to know a secret? One thing people say that gets under my skin is: "If you'd get out and exercise more...."

24. But I love it when people: help when I really need it.

25. My favorite motto, scripture, quote that gets me through tough times is: I just look at my Peanut. If she can do this I can too.

26. When someone is diagnosed I’d like to tell them: It's overwhelming and scary but you will be OK.

27. Something that has surprised me about living with an illness is: how many other people have the same issues I have.

28. The nicest thing someone did for me when I wasn’t feeling well was: take the kids for a few hours so I could rest.

29. The fact that you read this: means you want to know about what's wrong with me :)


Mom of a JRA kid said...

Stacey: thanks for following my blog. I added yours as well. It's a weird thing, but anytime I can find another parent dealing with this same monster, it's like a tiny bit of reassurance. Someone else knows what it's like and that means a lot. Like you, I also deal with my own illness. I have ulcerative colitis and sometimes I'm well and sometimes I'm sick, but my son has taught me more about dealing with illness and living life despite it than other doctor ever could. I hope you continue to find answers for yourself and Jordan. You have a beautiful family!

Lesli said...

Stacey.... I am so sorry to hear about your illness. I will be praying for you and I hope you start feeling better SOON! One of my best friends has Lupus, RA AND DM. Her blog is on my side bar "Summer's Stories", I am sure she would love to chat with you if you ever wanted! Hang in there!