30 Things About My Invisible Illness You May Not Know1. The illness I live with is: Glycogen Storage Disease type 1A, an esophagial ulcer and an undiagnosed illness
2. I was diagnosed with it in the year: GSD:1997(?), November of 2011, And currently undiagnosed
3. But I had symptoms since: well, for the GSD I was born with it so I've had symptoms since I was born, and for the other thing, 12ish.
4. The biggest adjustment I’ve had to make is: Not having the freedom to do everything. In having GSD, my life is lived by the clock. And also having this undiagnosed illness, I don't have a lot of freedom because it's constantly either not feeling well enough to do anything, or planning out my days so I don't get too overwhelmed...
5. Most people assume: I'm healthy, or that this will go away over time. Both of those statements aren't true. I'm not healthy, I am sick every day, every hour, every minute. I am usually in pain every day, every hour, every minute. And also, it won't go away (I'm not sure about the undiagnosed illness because we have no idea what it is! BUT there is no cure for GSD)
6. The hardest part about mornings are: Getting out of bed. I usually end up doing it in stages, lay there for a while, wait, then move to sitting up, wait, get out of bed, wait, climb the stairs...
7. My favorite medical TV show is: Grey's Anatomy! Also, Private Practice.
8. A gadget I couldn’t live without is: Well, besides my pump, which I couldn't live without in the literal sense, I couldn't live without my laptop, in the figurative sense.
9. The hardest part about nights are: A couple of things, actually. the first one is laying in bed, in pain. Some nights I can actually hear my heartbeat and feel it shaking my body and one thing leads to another and then it's worry. Worry is another big one, worry about if I'll wake up in the morning, worrying about if my pump will wake me up in the middle of the night (Which is another hard part about nights, no sleep! Half due to my pump beeping and half due to insomnia!)
10. Each day I take: Well, I'm supposed to take a mixture of vitamins and some pills for my ulcer. Sometimes I
am lazy forget and don't take them. I'm usually pretty good about taking them. And now that we're talking about it I realized I haven't taken my meds yet!
11. Regarding alternative treatments I: am willing to try it. I don't know if I've really done anything yet that's considered an alternative treatment, but I am definatly open to trying
12. If I had to choose between an invisible illness or visible I would choose: That's hard. I think with a visible illness it would be easier to get some recognition and for people to understand, but I don't think I would want a visible illness. With an invisible illness, there is a part of it that is kept so personal and I get to decide who knows and who doesn't. Also, I notice the looks I get when I am out in public when I'm all hooked up, and it's not easy to have people look at you like that. I don't know if I would be able to handle that all the time!
13. Regarding working and career: For the past couple years, I've been working in childcare, which I love doing. Sometimes it can be really hard and exhausting. In the future, I would love to get into medicine. Either get my nursing or go to med school. My big dream would be to open up a retreat center for children and teens with chronic illnesses.
14. People would be surprised to know: Exactly how hard it is. Even some of the people closest to me who see me in my everyday life really have no idea how hard it is. There's no way they could know, because they've never lived it.
15. The hardest thing to accept about my new reality has been: Since I was born with GSD, it's been my life, always, and I think it would be really wierd NOT to have it. But with this undiagnosed illness, it's been really hard to adjust and accept there are days when I can't do it all. I can't pack my schedule so full anymore, sometimes I will have to cancel plans and not go out because I'm either in too much pain or too exhausted.
16. Something I never thought I could do with my illness that I did was: Last summer, when I went on a missions trip, daily I was doing things I never thought I could do. Apparently I looked like I handled it ok because everyone on the trip was commenting on how strong I was, but it was really hard. But the trip was totally worth it, and I loved every minute of it, and I would totally do it all again!
17. The commercials about my illness: There aren't any.
19. It was really hard to have to give up: I don't really know, actually. Probably the most obvious answer is getting out and doing things. There are times I can't go to youth group, or times I can't go out with my friends.
20. A new hobby I have taken up since my diagnosis is: One thing I love doing is writing. Physical activity was something I never really did a lot of. It wasn't that i couldn't, it was more so that the physical activity made my blood sugar drop and if we weren't careful I would go hypoglycemic. And even now, with this undiagnosed thing managing my life, I still love to write.
21. If I could have one day of feeling normal again I would: EVERYTHING! Seriously, this is like letting a kid loose in a candy store! I would want to do everything, I would want to stay out late with my friends and ride my horse (and actually feel good enough to do it!) and do all those things normal people do.
22. My illness has taught me: It's taught me to never take anything for granted. I've realized every single day is a gift. And I've learned who my true friends are, and who is really importent to me. I've grown in compassion and empathy. I've learned I have more strength then I ever thought possible.
23. Want to know a secret? One thing people say that gets under my skin is: There are lots of things people say that can get under my skin, and some of the wierdest things too that I know they mean to be encouraging. I've heard "Just pray about it," more times then I can count. or "Trust God," as if I'm not doing that already. I also hate it when people say "Oh, I know what you've been through, I know how it feels." Uh, no, you don't!
24. But I love it when people: Sit with me. And I kow that's wierd, but I love when people just sit with me. They don't have to say anything, but having them there, and knowing they want to be there and want to help me through this, that's one of the biggest things anyone can do for me. That, and hugs. :)
25. My favorite motto, scripture, quote, etc. is: Just one? I have a lot of them that I go back to when I need encouragement. I think one of my favorite verses (I think it's like the favorite Bible verse of all sick people, I've heard it so many times!) is 2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me
26. When someone is diagnosed I’d like to tell them: I really like what my friend wrote for hers (Or stole from someone else to post on hers) so I am going to re-steal it and put it here, because I think it's so true: “It will be hard, but it will be ok. You know your body best, you need to be your own advocate, and you need to be strong in spirit even if your body is weak.”
28. The nicest thing someone did for me when I wasn’t feeling well was: When I was going into the hospital last November (same time I was diagnosed with the ulcer) and have surgery, all my friend's wrote my these letters. Through out my stay I was able to open these letters and see a bit of home. It was like having a piece of my friends there with me, and it was wonderful to know they were at home supporting me and waiting for me to come home, and they were praying for me. I still have those cards, and go back and look at them when I am having a hard day.
30. The fact that you read this list makes me feel: Grateful, and hopeful that maybe you have a better understanding now of what I go through on a daily basis.