30 Things

So I was checking out one of my new favorite blogs, The Single Gal’s Guide to Rheumatoid Arthritis, when it occurred to me that I hadn’t ever really checked out her links section. One of the blogs that I found very interesting there, The Truth About JRA, is really insightful. This young lady is basically medicine free, how we’d all like to be. I borrowed the following survey from her.

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Systemic Onset Juvenile Rheumatoid Arthritis

2. I was diagnosed with it in the year: 1993ish

3. But I had symptoms since: 1992

4. The biggest adjustment I’ve had to make is: Really, I’ve had this since I was about four, so I haven’t had to adjust a whole lot. I do definitely hate not being able to do things “normal” people can.

5. Most people assume: that I am lazy and eat a lot. I try hard every so often to lose weight, but the physical activity of everyday can be hard, let alone working out.

6. The hardest parts about mornings are: trying to convince myself to get out of bed and sometimes just changing clothes.

7. My favorite medical TV show is: It’s a tie between House and Scrubs. I’m more attached to Scrubs, but I love how House’s mind works.

8. A gadget I couldn’t live without is: my laptop. On the really bad days, it can be my only real access to the outside world.

9. The hardest parts about nights are: trying to get to sleep… finding a comfortable position in which to lay… the stiffness that is brought on by the day’s activities.

10. Each day I take __ pills & vitamins. I try to not take medicine. I only take a mixture of Advil and Aleve. Occasionally, I will take respiratonic to combat the respiratory effects of the disease. On a bad day (i.e., the week before last), I will take up to ten pills a day.

11. Regarding alternative treatments I: believe in and endorse them far more. Medicines and shots are part of why my disease showed up in the first place.

12. If I had to choose between an invisible illness or visible I would choose: Can I choose no illness? I guess I’d rather have an invisible illness that I can share (poor wording?) the effects of with people I am close to… although I hate it when other people judge me.

13. Regarding working and career: I have taken jobs that are easier on myself physically and mentally than working in the retail world.

14. People would be surprised to know: that I don’t take five million pills and shots and instead try to control my pain through meditation and expression.

15. The hardest thing to accept about my new reality has been: Well, again, I haven’t really had a new reality. I am having to come to terms with having to lean on the people around me more than I am used to when times are difficult. I hate needing help.

16. Something I never thought I could do with my illness that I did was: probably anytime I have a day out without feeling a major amount of pain afterwards or during.

17. The commercials about my illness: make medicine the end-all, be-all of solutions. You can’t just treat the physical pains (especially with meds that have terrible side effects).

18. Something I really miss doing since I was diagnosed is: playing and running around without worrying how badly I am going to pay for it later. I missed so many years of school and friends.

19. It was really hard to have to give up: more of my independence recently.

20. A new hobby I have taken up since my diagnosis is: learning as much as I can about my disease. I try to eat things that are less able to hinder my body, but that doesn’t always work as a college student with two jobs.

21. If I could have one day of feeling normal again I would: probably cry for a good hour or so… then spend time trying to do things around the house and where I live that are difficult for me.

22. My illness has taught me: that every good day is a gift to be embraced and spent wisely.

23. Want to know a secret? One thing people say that gets under my skin is: … I hate it when people talk about how weird I am without knowing the whole story.

24. But I love it when people: try to cheer me up with humor, hugs, and some Ben & Jerry’s.

25. My favorite motto, scripture, quote that gets me through tough times is:

“To change the world,
Start with one step.
However small,
The first step is hardest of all.”
-“You Might Die Trying” by Dave Matthews Band

26. When someone is diagnosed I’d like to tell them: Don’t worry. Work hard and stick to your guns and everything will be alright in the end. Learn about your body and know your limits, but push them ever-so-slightly. Don’t be afraid of telling people about your disease. They will understand you better.

27. Something that has surprised me about living with an illness is: how unaccepting and judgmental people can be before they know about my illness. Also, I don’t have to give up everything that I love to do in order to be pain free. Some things just need to be reworked.

28. The nicest thing someone did for me when I wasn’t feeling well was: just to take care of me and understand that I am in pain.

29. I’m involved with Invisible Illness Week because: Well, I’m really not… yet.

30. The fact that you read this list makes me feel: like you might be able to understand me and my problems in general as well as JRA.

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