Tuesday, September 11, 2012

Invisibile Illness Awareness...

1. The illness I live with is: Glycogen Storage Disease (GSD) type 1A, Dysautonomia
2. I was diagnosed with it in the year: GSD when I was 4 months old, and Dysautonomia when I was 15
3. But I had symptoms since: 3 years ago
4. The biggest adjustment I’ve had to make is: Accepting that I can't do it all! It's always been a tug of war, in both cases, of wanting to do everything and live a normal life and live in denial, and also to make sure I get what I need and take care of myself.
5. Most people assume: I'm fine.
6. The hardest part about mornings are: Since I changed my diet (Gluten free!) I am having more energy, which makes getting up in the mornings not that bad, but it used to be awful!
7. My favorite medical TV show is: Grey's Anatomy! With Private Practice coming in at a close second. So glad those are going to be starting up again soon. This summer I think I watched about 4 seasons on DVD...
8. A gadget I couldn’t live without is: Currently my pump (literally) and figuratively, my laptop
9. The hardest part about nights are: Being hooked up. I've grown so used to it now I don't know what I would do without it, but on those nights when it decides to be picky and beep at every little thing, I hate those nights.
10. Each day I take _2_ pills ; vitamins. (Also Cornstarch drinks 5 times a day)
11. Regarding alternative treatments I: would be willing to try them. Haven't as of yet, I don't think, but I'm not going to say never!
12. If I had to choose between an invisible illness or visible I would choose: I think there are perks of both. I actually had this conversation yesterday, how when you see someone in a wheelchair or whatever you know something is wrong, but then you see someone at me, and I look fine, so sometimes people look at me funny if they see me doing something that I have to do (Like eat in random places. which as apparently my friends, and my mother's friends now know is something I try to avoid doing in church) Some days I think I would like a visible illness, but then also an invisible illness is easier to hide. Can't I have the best of both worlds?
13. Regarding working and career: Now, since I know I have people out there who would kick my butt if I said I couldn't do anything because I have GSD, I am back to considering a career in medicine. Thanks to Dr. Kushnani and her team at Duke I may actually have a chance to go and practice that real soon! But yeah, currently I am a student, and a writer, but I would love to be a doctor one day.
14. People would be surprised to know: I don't handle it as well as people think I do. I do try to keep my sick life and my normal life separate, though that really isn't working well for me right now. I don't let a lot of people in, and let them see into my real world.
15. The hardest thing to accept about my new reality has been: Well I've been sick for forever, so I never really thought it would be that hard, but this dysautonomia, which has just recently actually been diagnosed, has been harder to deal with then I originally expected. I never imagined there was so much I just didn't feel like doing (Not because I was really lazy, just because I was tired, or didn't feel right) also, I never expected the emotionally side that would come with being undiagnosed. Dealing with the emotional side effects has been harder then I ever imagined.
16. Something I never thought I could do with my illness that I did was: Complete a 5K. I think that's probably the biggest, and most recent.
17. The commercials about my illness: There are none, we are that special! 1 in 100,000!
18. Something I really miss doing since I was diagnosed is: I missed having a social life. I still do see my friends a lot, but I remember before i made the diet change how I would just feel sick every single day, and most days I wouldn't make it to youth group, or a spa party with a friend. I've really had to pick and choose what I want to participate in. I'm getting better at it now, though (Both the picking and the choosing and the seeing people)
19. It was really hard to have to give up: Currently... Everything I thought I had, and this idea of normalcy I was clinging to (also intermingled with denial) Accepting that i have to let go of control. I'm not very good at giving up control.
20. A new hobby I have taken up since my diagnosis is: Can I say writing? I've written forever, but without my illnesses I would have no stories, so writing is definatly something that has come out of my illness.
21. If I could have one day of feeling normal again I would: Go for a run, spend the night out with my friends (All night). I would want to do everything.
22. My illness has taught me: Never to take anything for granted, to live each day fully, to never stop fighting and to never give up hope.
23. Want to know a secret? One thing people say that gets under my skin is: "Well you look fine!"
24. But I love it when people: Are in it with me. This looks different for every single person in my life, but it just consists of being there when I need somebody, letting me cry when it's too much, rejoicing with me when I'm happy, just wanting to be in this illness with me and fight it with me. Also, hugs are good :)
25. My favorite motto, scripture, quote that gets me through tough times is: I have a lot, and depending on the season i am in the quote i like changes. Right now it's: "Have some fire, be unstoppable. Be a force of nature. Be better then anyone here and don't care what anyone thinks. There are no teams here, no buddies. You're on your own. Be on your own."
26. When someone is diagnosed I’d like to tell them: You will make it through this. It will hurt like crazy, and you'll think you're going to die, but you can survive anything. You can do this!
27. Something that has surprised me about living with an illness is: The amazing people who also live with chronic illnesses that come around you and support you. I've met so many wonderful people, and their support for me amazes me daily. I can't imagine what it would be like to live without a chronic illness now, and I actually feel sorry for people who don't have the support behind them, pushing them, whispering in their ear, "You can do anything. Don't stop, don't let your illness win, come out victorious."
28. The nicest thing someone did for me when I wasn’t feeling well was: I had to think for a minute here. The one that sticks out to me was when I went to a movie with my friends. It was super late, I wasn't feeling well, I was tired. I told one of my friends who was sitting beside me to make sure I didn't fall asleep during the movie. About half way through the movie my friend leaned over and said, "You ok?" It's the little things like that that stick out in my memory, those tiny glimpses that if I blink in the wrong second I could miss.
29. I’m involved with Invisible Awareness Week because: I want to raise awareness for these conditions like mine, where people don't know about them. GSD, and also Dysautonomia, are some of those conditions where a lot of people don't know, even doctors. I want to use my voice to tell people, to educate them and to inspire.
30. The fact that you read this list makes me feel: More educated, more aware of what people with chronic illnesses live like. Maybe even a little bit inspired.

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