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.

30 things about my invisible illness you may not know

Invisible Illness Awareness week is past (September 11-18) But my friend shared this today on her blog, reminding me of how importent it is to raise awareness for these invisible illnesses and to share your story. So here are 30 things you might not have known about my invisible illness:

30 Things About My Invisible Illness You May Not Know

1. 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.

One Lovely Blog Award

It looks like I got One Lovely Blog Award from the equally lovely M.Cat over at Glittering compositions, and again by my friend Sylvi.
I'm not a big one for blogging games, but I can't say no to this award. (I mean, come on, look at it)
So here's the drill, I tell you 7 random facts about myself, and then I will pass on the award to 7(ish) of you lovely's. So here we go...

1. I have written about 10 full length novels in my life time. 7 of those novels were part of a series.

2. I am a self- proclaimed Grey's Anatomy addict. I have an obsession for which there is no cure, or at least not one that I have found. 6 days until this next season begins.

3. When I was 11/12, I was in a coma no one thought I would come out of. My dad teases me by saying me 12th birthday never happened because I was asleep.

4. I got my first pair of red shoes today, very excited.

5. My favorite color changes with my mood.

6. I always bite my tongue when we walk down the aisle where the laundry soap is kept, because the smell of it makes me sort of hungry, or wanting to chew something anyway.

7. I have a wierd obsession for touching food. Except not my own food. Like brown sugar in the grocery store, stuff like that. I would love to work at Subway so I can touch people's subs. Maybe it's because I didn't start eating until I was 13.

Ok, now time to tag. Here's who I give this award to...

Cairo

Miss Caroline

Nichelle

Princess

Emii

Nikki

and... Bess

Have fun, guys!

80 questions

1. What Color Is Your Toothbrush?
Lime Green
2. Name One Person That Made You Smile Today?
Um, seeing my friend at church today after she's been gone a really long time (all summer.)
3. What Were You Doing At 8 AM This Morning?
Sleeping
4. What Were You Doing 45 Minutes Ago?
Leaving the church parking lot, I think. Or getting gas, or on the way home
5. What Is Your Favorite Candy ?
Nothing.
Number 6 is missing because I deleted it. :-)
7. What Is The Last Thing You Said Aloud?
Um, probably something like me telling my mom what I wanted on my sandwich
8. What Is The Best Ice Cream Flavor?
I like Strawberry
9. What Was The Last Thing You Had To Drink?
Water.
10. What Is The Longest You Have Gone Without Sleeping?
Probably 24 hours. ish.
11.Have you ever made a promise you swore to keep?
Of course.
12. Have You Bought Any New Clothing Items This Week?
No.
13. The Last Sporting Event You Watched?
A football game my dad had on that I paid little to no attention to
14. What Is Your Favorite Flavor Of Popcorn?
There's more then one flavor?
15. Who Is The Last Person You Sent A Message To On FaceBook?
Um, to my friend asking about my other friend whose in the hospital
16. Ever Go Camping?
Yep
17. Take vitamins daily?
No. I take them sporadically when I feel especially good and healthy and holy. OR when I feel the creeping sensation of doom.
18. Do You Go To Church Every Sunday?
Yes!
19. Do You Have A Tan?
No, I am pale, like a vampire.
20. Do You Like Chinese Food Over Pizza?
I love both. Depends on my mood.
21. Do You Drink Your Soda With A Straw?
I don't drink soda, but I think everything tastes better with a straw
22. Who Are You Currently Talking To On AIM?
Don't have AIM, but i am currently talking with lovely people on SBW (Star bright world)
23. What Are You Doing Tomorrow?
Hmm, possibly working, hopefully relaxing
24. Where Is Your Dad?
in the kitchen, making lunch
25. Look To Your Left, What Do You See?
a chair, a lamp, an old sewing machine with pictures and plants on it
26. What Color Is Your Watch?
Blue?
27. What Do You Think Of When You Hear Australia?
Koala bears and kangaroos!
28. What Is Your Birthstone?
Topaz
29. Do You Go In At A Fast Food Place Or Just Hit The Drive Thru?
I prefer going in, but sometimes we just drive through
30. What Is Your Favorite Number?
21, or 3, or 7, or 12, or...
31. Who's The Last Person You Talked To On The Phone?
My auntie.
32. Any Plans Today?
Family reunion.
33. Health Freak?
No.
34. Biggest Annoyance In Your Life Right Now?
Um, IDK. I have a lot of annoyanes, but I don't know the biggest one.
35. Last Song Listened To?
"To save a life" by the Fray
36. Can You Say The Alphabet Backwards?
It would be very difficult, and likely embarrassing.
37. Do You Have A Maid Service Clean Your House?
LOL. I wish.
38. Favorite Pair Of Shoes/Boots You Wear All The Time?
Currently, my black and red flip flops that are insanly comfy
39. Are You Jealous Of Anyone?
To a degree, of a couple people actually
40. Is Anyone Jealous Of You?
Heh. Not likely.
41. Do You Love Anyone?
Of course
42. Do Any Of Your Friends Have Children?
No, not to my knowledge.
43. What Do You Usually Do During The Day?
School, read, write, go on the computer, have a bath, other random things
44. Do You Hate Anyone That You Know Right Now?
Hate is a strong word. It would more be I hate the actions of someone at this time
45. Do You Use The Word “Hello” Daily?
I think so
46. Would You Rather Be Alone?
For a certain period of time, yes. Like about 10 hours out of a 12 hour day... lol
47. Do You Like Cats?
Yes!
48. Have You Ever Been To Six Flags?
No
49.Where Did You Get Your Worst Scar From?
My worst scar? Either the one on my arm from when I stuck my arm to the top of the oven while it was on, but that one's mostly faded now. either that or the one on my neck from when they tried to get an IV on my neck when I was a baby.
50. Hair Color?
currently, blonde.
51. Last CD Played?
A story CD my mom turned on last night to get my to be quiet and stop singing
52. Last Bubble Bath?
Real bubble bath or bath that when you wash with soap makes tiny bubbles? Cause if it was the last one, yesterday.
53. Last Time You Cried?
Um, last night, I think
54. Last Meal?
a Roast beef bun and a little bit of vegetable salad
55. Text Or Call?
Um, I prefer texting, but I don't either one all that much
56. Favorite Animal?
Gorilla's, panda's, koalas
57. Girlie Girl Or Tomboy?
Mildly schizophrenic.
58. Have You Ever Lost Someone?
Yes
59. Have You Ever Slept Until 1 PM?
Yeah, when I am sick
60. Have You Ever Been Drunk And Threw Up?
Never had any sort of alchoholic beverage
61. List Six People You Can Tell Pretty Much Anything To:
my friend Cairo, my friend Emily, I should probably include my mom, my youth pastor, probably, and... my misisons team? Ok, that's way more then 6, considering there's like 10 other people who went on the missions trip, but I could probably tell them pretty much anything
62. List Three Favorite Colors/Shades.
Pink, Orange and... Red
63. Have You Ever Laughed Until You Cried?
Oohh yes.
64. Went Behind Your Parents Backs?
Well, like most people, I was a bad child.
65. Who Posted This Before You?
Polka dot! (from life is to short not to wear red shoes. a new blog favorite of mine.)
66. Gay Marriage?
no.
67. Lowering The Drinking Age?
no?
Uh, 68 is deleted too. It was lame.
69. Who is the best hugger that you know of?
Best hugger? My friend Caitlynn hugs a lot, and she's pretty good at it, I guess.
70. Do You Believe In Love At First Sight?
I definitely believe that love can begin in an instant.
71. Is There Something You Want To Tell Someone?
Yes.
72. Are You A Flirt?
I don't try to, if that's what you're asking
73. Are You Easy To Read?
Ha ha ha ha, NO!
74. How Many Kids Do You Want To Have?
3, or 5, or something like that, depending on my future career and stuff like that
75. Do You Want To Change Your Name?
Not my first name. I wanna change my last name, someday ;)
76. Last Time You Saw Your Father?
less then a second ago. he is sitting across from me
77. What Time Did You Wake Up Today?
8:40 ish
78. What Were You Doing At Midnight Last Night?
Singing "There was 5 in the bed and the little one said roll over, roll over..."
79. What Is Your Favorite Thing In Your Room?
Well, my cabbage leaf :)
80. Where Is Your Best Friend Right Now?
Floating over rooftops on a seahorse. Just kidding, I would think somewhere in her town, but I'm not sure.