30 Things About My Invisible Illness You May Not Know, 2013 edition

I’ve done this survey a few times but every time I do it things change. Since I haven’t done it for a while, I thought I’d give it a go. Enjoy!

1. The illness I live with is: Still’s Disease (juvenile onset juvenile idiopathic arthritis), fibromyalgia, hypermobility, asthma, Sjogren’s Syndrome, psoriasis, gluten intolerance, scoliosis, and bouts of uveitis (I had to look this up on the blog because I can’t even remember it all now Jesus)

2. I was diagnosed with it in the year: Still’s – 1994; fibro – 2012; asthma – 1993?; psoriasis – 2010; gluten intolerance – 2011; scoliosis – 2012. The others have been mentioned multiple times so I’m not sure? That’s bad haha.

3. But I had symptoms since:  Still’s onset was in 1993, but the others all follow this so in reality I have no clue.

4. The biggest adjustment I’ve had to make is: slowing down. Since I can remember I’ve always done a lot – I did plays in high school and didn’t get anything less than a 4.0 until my junior year. I was one of the valedictorians. At one point in college, I was taking 4 classes and working 3 jobs. Most of my working life I’ve had 2 jobs, but I can’t do that anymore. Resting is terrible for me.

5. Most people assume: I’m fat because I eat twinkies all day and sit on my ass. They don’t know about the 2 years on steroids and the terrible hungers. They don’t know that I work myself to the bone and still barely lose weight no matter what I do. And they almost always assume when I use my parking placard that I’m using my grandma’s illegally. I love the stares I get, I really really do.

6. The hardest part about mornings are: Actually waking up. My night time meds make me incredibly woozy so it is really hard to physically wake up to my alarm clock.

7. My favorite medical TV show is: House, always House.

8. A gadget I couldn’t live without is: my laptop/phone/iPod touch. They are my connections to the outside world so that even when I feel the worst I can still take part in being a part of the world. Plus it’s where most of my friends are 🙂

9. The hardest part about nights are: both getting to sleep and dealing with the Still’s. It is most active at night, so that is when I get my fevers, chills, and rashes the worst. After about 5 pm I look a mess no matter what I do.

10. Each day I take approximately 14 pills and I do a shot once a week.

11. Regarding alternative treatments I: think some of them can work but I trust those that have been scientifically proven because most of the ones that do work only do so for specific illnesses and have little impact on autoimmune arthritis. I do believe massage and changes in diet can help but by no means can these things cure us.

12. If I had to choose between an invisible illness or visible I would choose: I’m down with what I got. There are plenty of days where these things aren’t invisible – people just don’t know how to look.

13. Regarding working and career: I miss having a job that made me feel more important and helpful than my current one – don’t get me wrong I know I help so many people captioning calls for the deaf and hard of hearing, but I don’t usually get admiration save from my supervisor. My volunteering efforts are my real jobs.

14. People would be surprised to know: Just how much pain I am in every single day and the fact that I’m not on narcotics to deal with it would probably blow their minds. Just right now I’m hitting a 4.5 on my pain scale, but I feel like to others this could be 7 or 8 territory.

15. The hardest thing to accept about my new reality has been: losing my independence. It isn’t like I’ve lost that much, but I’m very stubborn and I will do things myself no matter how much it hurts… or at least that’s how I used to be. The fiance had to help me walk to my bed last night – 20 feet I think. He often has to help me take off certain clothes like sports bras because of how my shoulders hurt. I know he loves me and would do whatever I asked, but I’d rather think of him taking off my clothes in a funner way than it happens.

16. Something I never thought I could do with my illness that I did was: I FUCKING RAN. I haven’t run a lot lately but oh my god. I used to run a lot in high school and I lost it to this disease. The day that I decided to run again earlier this year I was almost in tears at the gym over how proud I was. Every time I run and push myself a little further, from running half a mile to three quarters say, I can’t even describe the feeling I get.

17. The commercials about my illness: well, actually, there aren’t any commercials about Still’s because like no one knows it fucking exists except for those of us affected by it and other volunteers/doctors/etc. I will say arthritis commercial piss me the fuck off though. “Hooray, I can run with my puppy because of my shots!” is not the norm. And a certain golfer certainly has got moon face from steroids along with his Enbrel…

18. Something I really miss doing since I was diagnosed is: I’ve been sick since I was 5 so… um… I guess everything? Everything I’ve done really has been post diagnosis and with a good amount of pain and fatigue involved so it is hard to answer this question.

19. It was really hard to have to give up: graduate school and being spontaneous definitely. I’d love to wake up on a Saturday and look at the fiance and say “Hey, let’s go hiking today” but I really can’t. Even when we are able to go, I have to carry certain things with me that make it a pain in the ass. Grrr.

20. A new hobby I have taken up since my diagnosis is: Again, being sick since I was 5, this would include just about everything but singing, dancing, and Disney movies. But clearly I’m enjoying blogging.

21. If I could have one day of feeling normal again I would: choose to save that day for my wedding day. Please please please I need this to happen.

22. My illness has taught me: virtually everything I know about perseverance and fighting. I often wonder what I would be like without this illness and how lame I would be haha.

23. Want to know a secret? One thing people say that gets under my skin is: when people fucking tell me to take a Tylenol or do xyz or take these herbs or just stop taking meds or when my soon-to-be-ex-primary-doctor treats an issue I’m dealing with with less importance because he thinks I’m a hypochondriac or assumes that something doesn’t hurt when I’m used to 8s and 9s on the pain scale and might not realize how that changes things. Fucker.

24. But I love it when people: do something to show me they care. Some of my favorite experiences have been when someone recognizes I’m having a rough day and does something to help it get better, whether it means offering physical help or emotional care.

25. My favorite motto, scripture, quote that gets me through tough times is: “Living with Still’s can still be life.” – Laura Jayne Kenyon

26. When someone is diagnosed I’d like to tell them: learn every single thing you can about your illness. Discuss an elimination diet to see if foods make it worse. Connect with others to form not only a support system but also a group that can analyze new treatments for each other and such.

27. Something that has surprised me about living with an illness is: that no matter how much I hate these fucking diseases I wouldn’t be any other way. All the kids I know with this need someone who can help their parents understand and if I can help just one parent help make their child’s life better then everything I have been through is worth it.

28. The nicest thing someone did for me when I wasn’t feeling well was: I can’t even pick out one thing. I can say for sure that no one helps me like my fiance does, from making food special for me that he knows I like so that I eat even when I have no appetite due to this disease to trying to carry me to the bathroom even though maybe I am a bit too heavy and he’s not quite strong enough for him to do that haha.

29. I’m involved with Invisible Illness Week because: I am tired of being judged, but more than that I don’t want the kids I know to be judged and to feel the fire unbelievers can have in their stares or their words. It has to change.

30. The fact that you read this list makes me feel: like you are awesome!

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