Monday, April 15, 2013

Things About My Invisible Illness(es) -- April 2013

I originally posted this blog back in November 2009 but, I thought it was time to update it now that I'm a few years in to what were new diseases and meds back then. Since posting the original blog in 2009, I've had a few new things added to my bag of tricks because my body is SO awesome and it feels it must be an overachiever. 

 If you don't know already know, autoimmune diseases are a result of one's immune system attacking healthy tissue. That includes joints, the eyes, major organs, hair, skin and connective tissue in ANY part of the body. 

For a list of Autoimmune and Autoimmune-Related Diseases, visit The American Autoimmune Related Diseases Association, INC. 

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

All of my newer issues are in red. Some of my original diseases, like UCTD, have become more defined as the years have gone on.

1. The illness(es) I live with: Interstitial cystitis, adenomyosis & ovarian cysts (hystererctomy 2 months after I turned 34), antiphospholipid syndrome; AKA APS or sticky blood, (undifferentiated) connective tissue disease similar to lupus and RA. In October 2010 I was diagnosed as sero-negative RA. Lupus markers have come down, a lot! We've added firbomyalgia and Raynaud's in the last 2 years.

2. I was diagnosed with it in the year: 2009, and we're still counting in 2013

3. But I had symptoms since: the age of 8-10

4. The biggest adjustment I’ve had to make is: remembering to take all my meds and to stop when it hurts. And telling people no!!

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, phone

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 15-16 pills & vitamins. PLUS, a weekly methotrexate injection and Remicade infusion every 4 weeks, just to keep walking.

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 -- I can fake looking and feeling good really well when I need to.

13. Regarding working and career: not sure if I could go back to work at this point. I won't be going back to work

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: Flat out piss me off. None of them are accurate, you can't just take a pill, a shot or sit in an infusion clinic for a few hours a month and magically be cured. These may work for some people but for the majority of us, it's not even close. 

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. I miss the beach weekends more than anything.

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: No one is safe. Young, old, we're ALL at risk.

23. Want to know a secret? One thing people say that gets under my skin is: "If you'd get out and exercise more...." " My ______ has arthritis, too. S/he took _____ and was cured. You should try it." I really do appreciate the well meaning advice but unless your cousin's, best friend's, great aunt had an *autoimmune* disease that causes arthritis and the other issues I have, I doubt their treatment will help. 

24. But I love it when people: help when I really need it. Our neighbor has been wonderful on the mornings I can't get the kids to school.

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. Contact me, I'll get you in touch with others in your area going through the same thing.

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. During my last flare, where I had no idea what was going on, some friends called, sent messages or contacted Rick to see if I'm OK after not hearing from me for a few days. No one has ever done that before.

29. The fact that you read this: means you want to know about what's wrong with me :)  Or you're bored and have nothing better to do! 

Good days

Not so good days


Anonymous said...

Very well written Stacey...Someday things will be better :) Better sooner than later!

Love ya, Auntie Marilyn

Anonymous said...

I read it, love u.