30 Things You May Not Know About My Invisible Illness

I am doing this post for invisible illness week which is this week. 

1. The illness I live with is: Enthesitis, Amplified Musculoskeletal Pain(AMP), and Uveitis
2. I was diagnosed with it in the year: Uveitis-2012, Enthesitis and AMP-2013
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: I have had to learn I can't do everything I want or everything that other people my age are doing.
5. Most people assume: I am perfectly fine or I just have osteoarthritis and not an autoimmune disease.
6. The hardest part about mornings are: Getting out of bed, doing my hair, and figuring out what outfit will be the most comfortable for the day (and accommodate any swelling I may have)
7. My favorite medical TV show is: Grey's Anatomy (and Scrubs even if it is no longer on)
8. A gadget I couldn’t live without is: My Freezer
9. The hardest part about nights are: Not being able to fall asleep in a comfortable position and waking up in the middle of the night in pain
10. Each day I take __ pills & vitamins. (No comments, please): 6 or 7 usually
11. Regarding alternative treatments: I am pretty open minded to things that have some medical backing.
12. If I had to choose between an invisible illness or visible I would choose: I can decide on this because it is nice not to be thought of as the sick kid but it is also frustrating when people don't seem to believe me because "I look healthy"
13. Regarding working and career: I am currently a college student
14. People would be surprised to know: I used to hate running and now I really want to be able to run
15. The hardest thing to accept about my new reality has been: I need to slow down sometime and I may never get back an active lifestyle.
16. Something I never thought I could do with my illness that I did was:I played twister last week and I was pretty happy about that.
17. The commercials about my illness: There aren't any about mine specifically but the ones about other forms of autoimmune arthritis because they never show anyone even close to my age, and I am far from the youngest patient with this disease.
18. Something I really miss doing since I was diagnosed is: Horseback Riding 
19. It was really hard to have to give up:Hiking
20. A new hobby I have taken up since my diagnosis is: Blogging
21. If I could have one day of feeling normal again I would: Hike, Horseback Ride, Run in circles, dace, and eat pineapple!
22. My illness has taught me: Not to judge people so fast
23. Want to know a secret? One thing people say that gets under my skin is: "Oh I have some of that in my hand from when I punch a wall" (yes someone actually said that to me)(or anything similar)
24. But I love it when people: Just listen and don't doubt me, or help me when I ask for help with out saying how silly it is that I can not do a simple task.
25. My favorite motto, scripture, quote that gets me through tough times is: "It gets better"
26. When someone is diagnosed I’d like to tell them: Its scary and hard and it doesn't get easy but it is and will be okay, it does get better and you will make it through this and be a stronger person.
27. Something that has surprised me about living with an illness is: How many other people face it but how few people know about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: Someone once sent me an amazon gift card when I was having surgery.
29. I’m involved with Invisible Illness Week because: To create awareness!
30. The fact that you read this list makes me feel: Happy you cared enough to get to the end!

5 comments:

  1. Great list!
    You really have a point about number 27. I feel the same way about thyroid disease. It's so common but so misunderstood -- even by most doctors.

    By the way, I love the subtitle of your blog.

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  2. I think 27 rings true for many diseases, in general I have become much more educated about different chronic illnesses since encountering my own. I think we all run into to doctor's who have no idea what we have, I try to avoid walk-in clinics for that reason.

    I am glad you like the subtitle! I think I am finally towards the end of the House part, when I had thought all my issues were orthopedic the name was actually House OS.

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  3. I've been following you for a while Joan. So happy to read you finally have a real diagnosis! Hope your meds are working and helping you out!

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  4. I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

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  5. Ms. Rainbow, thank you so much!

    Cam, I would be happy to answer any questions, but I can't find your e-mail so either leave it here or email me at joan@fanwick.com

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