Monday, September 28, 2015

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is (are): systemic juvenile arthritis, fibromyalgia, patellofemoral arthralgia, psoriasis, anxiety, depression, post-traumatic stress disorder, food intolerance (dairy & gluten), and suspected Raynaud's.
2. I was diagnosed with it in the year: 1994, 2012, 2014, 2010, 2011, 2011, 2015, 2012, and not yet respectively.
3. But I had symptoms since: 1993, 1993, 1993, 1995, 1995, 1994, unsure, unsure, 1993
4. The biggest adjustment I’ve had to make is: learning how to deal with the health/insurance/care world very quickly
5. Most people assume: I'm ill because I'm fat - it's actually the other way around.
6. The hardest part about mornings are: actually waking up is hard.
7. My favorite medical TV show is: House, as always.
8. A gadget I couldn’t live without is: my iPhone. I used to be an Android person but the iPhone 6 won me over.
9. The hardest part about nights are: getting to sleep.
10. Each day I take 12 pills & vitamins. (and one syringe!)
11. Regarding alternative treatments I: am really skeptical. You have to do your research because a lot of alternative treatments have their own interactions, risks, and side effects.
12. If I had to choose between an invisible illness or visible I would choose: invisible. I've always felt lucky that my illnesses are mostly invisible because I can get by 'as normal' if I want or need to. I can't imagine how hard it is to handle the more visible issues.
13. Regarding working and career: I enjoy my current job but it will be nice when I can start doing more of my own thing.
14. People would be surprised to know: that I'm sickeningly sweet. I tend to use my blog and twitter account to get out all my frustrations and upsets so that they don't contribute to me feeling icky.
15. The hardest thing to accept about my new reality has been: probably how uncaring some people are. I am a super hippie and way into compassion, so I'm sure there's a disconnect there too.
16. Something I never thought I could do with my illness that I did was: run again, and I'm getting there!
17. The commercials about my illness: well there really isn't one for SJIA. The fibro ones make it seem like it's all women and we're all kinda whinny. No thank you!
18. Something I really miss doing since I was diagnosed is: ... since I've been sick my whole life, there's not much, but with the gluten intolerance, I would say not having to plan my meals so much... OMG and Olive Garden breadsticks.
19. It was really hard to have to give up: OG breadsticks...
20. A new hobby I have taken up since my diagnosis is: mostly everything! I taught myself to play the ukulele and I'm getting really good at singing.
21. If I could have one day of feeling normal again I would: get a bunch of things done around the house - and do!
22. My illness has taught me: that even in the worst situations you can find blessings. I hate being sick and I hate that many people I know are sick - but I'm grateful that our illnesses have brought us together.
23. Want to know a secret? One thing people say that gets under my skin is: when they make comments about my rashes. Thank you. I know I look like a cherry popsicle.
24. But I love it when people: ask what they can do to help. Even though I don't really take people up on it, it's nice to have people who are willing to make food or some hang out during crummy days.
25. My favorite motto, scripture, quote that gets me through tough times is: Living with Still's is still living.
26. When someone is diagnosed I’d like to tell them: to learn as much as they can about their illnesses and remember that they are the expert in themselves.
27. Something that has surprised me about living with an illness is: how many awesome people are out there to connect with.
28. The nicest thing someone did for me when I wasn’t feeling well was: to text me and calm me down during a panic attack.
29. I’m involved with Invisible Illness Week because: the vast majority of my issues are invisible!
30. The fact that you read this list makes me feel: happy :)

4 comments:

  1. Love that you completely the 30 questions! On my list.. But I don't blog so no where to post!! Haha! Don't forget to come October 12th!!!

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    1. I won't!! Also you could totally do a note on facebook :)

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  2. I laughed out loud at 23!!!
    You are funny, and it's wonderful people like you that make this world a better place!

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    1. Thank you anon! I had forgotten I wrote that :-D

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