I am not 100% sure what I want to talk about today because there’s too many little things on my mind, so I’ve decided to adapt something I found on My Pink Bubble World (thanks for posting this Jennifer!). Not only is it Lupus Awareness month, but it is also Arthritis Awareness Month (which makes me wonder if it shouldn’t just be Autoimmune Disease Awareness Month). Anyway, here’s 30 Things About My Illness you may or may not already know.
1. The illness I live with is:
Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since:
At least since the fall of last year but I have had some occasional symptoms for years. The DDD has been going on for about 10 years.
4. The biggest adjustment I’ve had to make is:
I used to be the go-to person at work and at home, but I can no longer give 120% to everyone all the time. I can maybe give 50% some of the time. I have to let my body be in charge of everything I do.
5. Most people assume:
I don’t know. I haven’t been able to get out much and so my time with people since diagnosis has been limited.
6. The hardest part about mornings are:
EVERYTHING. Seriously. I hate everything about morning. I hurt the most in the morning and have the most limitations on my mobility in the morning. Plus, I have to start yet another day with lots of pain. It can be difficult to get over those morning grumpies.
7. My favorite medical TV show is:
Grey’s Anatomy.
8. A gadget I couldn’t live without is:
My iPad. Also my Kindle. I can’t hold regular books for long anymore, so the Kindle has been so great to have.
9. The hardest part about nights are:
Having difficulty falling asleep. I hate laying in bed at night with my mind going crazy.
10. Each day I take __ pills & vitamins.
11 1/2 unless I need pain meds. Wednesdays I take 15 1/2.
11. Regarding alternative treatments I:
am on the fence. I have started acupuncture, and I haven’t yet decided if it is helping or no.
12. If I had to choose between an invisible illness or visible I would choose:
I don’t know. Probably visible because it’s hard to get those “you don’t look sick” comments/looks.
13. Regarding working and career:
I just don’t know yet. I haven’t been able to work in almost two months, but I am really hoping to be able to go back part time soon. It won’t be the same as it was before, and I don’t know if ever will be, but I miss being around people!
14. People would be surprised to know:
how much of my day is spent planning around pain and evaluating how I feel. I can get really tired of thinking about how I feel.
15. The hardest thing to accept about my new reality has been:
I will never be who I was before. I will have to live with these diseases for the rest of my life. We may find good treatments that put me into remission for a period of time, but it is impossible to know if/when that will happen. Everything been a great unknown is hard for me.
16. Something I never thought I could do with my illness that I did was:
I don’t have an answer yet.
17. The commercials about my illness:
Do not in any way capture the reality of them. Also very much trivialize the horrible side effects most of the treatments can have.
18. Something I really miss doing since I was diagnosed is:
Working. Walking at the lake with Bill. Tucking my daughter in upstairs every night.
19. It was really hard to have to give up:
Alcohol and coffee. Though I wasn’t much of a drinker of alcohol and I do still drink about half a cup of coffee everyday.
20. A new hobby I have taken up since my diagnosis is:
Lots of iPad apps.
21. If I could have one day of feeling normal again I would:
Have a vacation fun day with Bill and the kids.
22. My illness has taught me:
To relax. To not worry so much about doing things perfectly. To not worry so much what other people think of me/expect from me. To listen to my own instincts and needs.
23. Want to know a secret? One thing people say that gets under my skin is:
You’re too young to have that.
24. But I love it when people:
Treat me like a normal person.
25. My favorite motto, scripture, quote that gets me through tough times is:
It’s not a motto/scripture/quote but the sppon theory has really helped me.
26. When someone is diagnosed I’d like to tell them:
It’s okay to be pissed off and to grieve; it’s okay to be angry and bitter. And then, you need to let that go and find a way to make your life work around your illness. It will be different than it was before, but it doesn’t have to ruin your life.
27. Something that has surprised me about living with an illness is:
How much I would change as a result of this. I feel like my whole outlook on things has changed because I have had to change my behavior so much.
28. The nicest thing someone did for me when I wasn’t feeling well was:
A very funny care package from my co-workers.
29. One thing I wish everyone could know about my illness:
Rheumatoid arthritis is not an old person’s disease and it is NOT just about achy joints.
30. The fact that you read this list makes me feel:
Good. I hope more people will try to talk about their illnesses, invisible or otherwise, so that we can try to become more thoughtful of one another.
The New Normal 