Invisible Illness Week 2011

I know I’ve done at least one of these ’30 things’ posts… But I feel like my answers could change all the time, and it’s worth posting again so here goes.

1. The illness I live with is: Still’s Disease/Systemic Onset Juvenile Rheumatoid Arthritis

2. I was diagnosed with it in the year: 1994ish?

3. But I had symptoms since: November 1993

4. The biggest adjustment I’ve had to make is: learning how to rest lately

5. Most people assume: that I’m fat, lazy, and don’t feel like I have to do anything. Yay me!

6. The hardest part about mornings are: dealing with morning stiffness and pain

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: my iPod touch – it really does everything

9. The hardest part about nights are: getting to sleep

10. Each day I take __ pills & vitamins. Well that varies for me – anywhere from 3-7.

11. Regarding alternative treatments: I’ve recently figured out that lactose, gluten, and stress largely increase my pain, so I’m trying to cut down on all three. Also, yoga is awesome.

12. If I had to choose between an invisible illness or visible I would choose: In the past I’ve been on the fence with this question, and I still think I am. I’m tired of people assuming I’m using my disease to be lazy and work less and have things go the way I want them. But I also would rather deal with that then possibly being in a wheelchair. Sooo, I don’t know really.

13. Regarding working and career: I’m in the middle of switching jobs, but I’m basically working to pay bills while I’m going to school right now.

14. People would be surprised to know: how I work through such intense pain. They think I use my disease as an excuse, but they also don’t see me struggling to walk in my own apartment… 

15. The hardest thing to accept about my new reality has been: having to slow down so much compared to when I started my blog. It’s really hard to deal with the fact that my body is getting worse and I’m really scared about what this will mean for my future 🙁

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

17. The commercials about my illness are SO misleading. They depict people who can finally run around again… Not to mention they ALWAYS depict older people, thus continuing the stereotype of arthritis as an old person’s disease.

18. Something I really miss doing since I was diagnosed is: Not a lot really changed, because I was so young.

19. It was really hard to have to give up: I miss running. I don’t get to do it that often anymore.

20. A new hobby I have taken up since my diagnosis is: everything! What hobbies does a six year old really have? 🙂

21. If I could have one day of feeling normal again I would: go run a marathon

22. My illness has taught me to: slow it down

23. Want to know a secret? I want to punch people in the face when they suggest a ton of vitamins and supplements.

24. But I love it when: people try to understand even though I know they can’t.

25. My favorite motto, scripture, quote that gets me through tough times is: “Don’t be better. Everybody suffers. If you can accept your suffering then you will understand other people better. Be grateful for pain. Love life.” – Stephen Colbert

26. When someone is diagnosed I’d like to tell them: keep your chin up and find a doc that really believes you. Get a great support staff going and learn as much about your disease as you can – it’ll help you educate others.

27. Something that has surprised me about living with an illness is: how rude people can be about it.

28. The nicest thing someone did for me when I wasn’t feeling well was: my boyfriend is constantly doing things to help me cope, from helping me accomplish tasks to providing emotional support.

29. I’m involved with Invisible Illness Week because: no one knows what it’s like, and I’ve bee dealing with this forever. I want to get people to understand better.

30. The fact that you read this list makes me feel: sorry if you’ve read it before, but grateful that you’ve spent the time to learn more about me!

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  1. Anonymous says:

    Hello Dear. I came across your page when I was researching about Still's Disease. My brother has been in the hospital for almost two months and they've narrowed it down to SD. Your blog is inspiring. You are inspiring.

  2. I am sorry to hear about your brother being so ill. I hope that finally finding a diagnosis will help him on the road to getting better. Thank you so much 🙂

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