(aka 30 things for the 30 year old!)
1. The illness I live with is: Type 1 Diabetes
2. I was diagnosed with it in the year: Dec. 10, 1998.
3. But I had symptoms since: May 1998...I recall getting personally acquanted with every single water fountain/restroom on all 3 floors of the high school. (it was the summer of driver’s Ed)
4.The biggest adjustment I’ve had to make is: Snacks, Eating, and not being my own person anymore.
5. Most people assume: That I’ve got it together by now, & my blood sugars never go over 120 or below 70. (“Do you have it pretty well regulated, dear?”) Yeah, right. (I’d like some of whatever you’ve been smoking) Every day is a constant battle.
6. The hardest part about mornings are: That they exist. (period)
7.My favorite medical TV show is: The Duggars/Greys Anatomy/Private Practice/What Not to Wear/etc....I don’t think I’ve got an absolute favorite, per say.
8.A gadget I couldn’t live without is: You probably think I’d say my insulin pump, or my Dexcom...but I could probably live without those. My iphone is the love of my life, though.
9. The hardest part about nights are: Sleeping on my side...but that’s not diabetes related, that’s pregnancy related. I was a back sleeper for 29 years and suddenly, I had to go cold turkey. (no easy thing) No one ever told me about that little thing known as “Supine Hypotension.”
10.Each day I take (X) pills & 0 vitamins: Well, it depends. I take at least 1 pill, and I’m supposed to take a prenatal(very lax on that one though) & there are the random aches & pains & allergies that I’ll occasionally have to pop some more pills, but yes, one a daily basis, just one. I’m trying to keep the pill brigade to a bare minimum right now. I do pump insulin 24/7, though.
11.Regarding alternative treatments I: if it works for you,& it hasn’t been shown to be toxic/damaging/etc. I think “alternative” treatments may have additional benefits. But you can’t “replace” insulin altogether, & you need to keep your HCP in the loop. I have taken supplements/herbals in the past, but I don’t pretend to speak for the DOC at large.
12.If I had to choose between an invisible illness or visible I would choose: I’m going to go with the invisible illness. If I don’t want to share it, I don’t have to share it.
13.Regarding working and career: I dunno what I want to do exactly...I’m leaning towards something in either pediatrics or research. I’m still very much the naive, impressionable nursing student. I don’t think being a CDE is in my future, I’m not the teaching sort. At this point, I’m just crossing things off my list (of RN jobs I don’t think I could ever do).
14.People would be surprised to know: That “Yes, I can eat that!!!”
15.The hardest thing to accept about my new reality has been:
That the “Golden Years” probably won’t be so golden, unless there’s a major breakthrough/cure. I fear the impending complications.
16.Something I never thought I could do with my illness that I did was:
Every day, I wake up & discover something else that I can do that I never thought possible with diabetes. Fear Factor. Job(s). School. Pregnancy. The list grows as my life goes by, & sometimes I look back & think “I did what?” (in my wild and crazy youth) Diabetes certainly throws monkey wrenches into the above, but it doesn’t have to “stop” any of it.
17. The commercials about my illness: are interesting, I feel a sort of “bond” with some of them in question...but the meter ones make me feel like smashing something.
18.Something I really miss doing since I was diagnosed is: Drinking an extra-large, sugary Slurpee on a hot summer day. I’m sure its entirely possible, but I’ve never been brave enough to try to figure out the bolusing sequence on that one.
19. It was really hard to have to give up: I wanted to enter the military, & well that was obviously out.
20. A new hobby I have taken up since my diagnosis is: Cross-stitch. I enjoy stabbing things (that aren’t body parts) with needles. (a sort of diabetes voodoo)
21.If I could have one day of feeling normal again I would: I’d eat a zillion carbs, & wash it down with a couple of Daquiri’s & veg out in front of the tv for the rest of the day. (of course, “normal” in this case means no D, & the absence of pregnancy)
22. Want to know a secret? One thing people say that gets under my skin is: “Have you had it since you were a baby?” (I know its called juvenile D, but why don’t you just ask me WHEN I got it?)
23.But I love it when people: just listen, and don’t judge!!!
24.My favorite motto, scripture, quote that gets me through tough times is: You can do this!
25.When someone is diagnosed I’d like to tell them: It’s going to be ok, you can do this.
26.Something that has surprised me about living with an illness is: that most of the time, I deal with it fine. You get used to it.
27.The nicest thing someone did for me when I wasn’t feeling well was: Brought me soup/liquids & made sure I was doing ok. (& called the doctor for me)
28.I’m involved with Invisible Illness Week because: It’s going around the DOC!
29. The fact that you read this list makes me feel: Hopeful for humanity. Invisible or not, we all need to be more understanding of others.
30.My illness has taught me: To be prepared for most “disaster” scenarios. Diabetes doesn’t have as much power over you, if you’ve got the antidote to the whatever it throws at you. I try to stay one step ahead of the ballgame, so when that disaster comes, its not "as bad."
Showing posts with label my invisible illness. Show all posts
Showing posts with label my invisible illness. Show all posts
Saturday, September 17, 2011
Sunday, September 20, 2009
My Invisible Illness(es)
(this is for last week..I'm late, as usual)
1. The illness I live with is: type 1 diabetes, Bartter's Syndrome. One is decidedly more impactful then the other..but most chronic illnesses go hand-in-hand with diabetes.
2. I was diagnosed with it in the year: December 1998. September 2005.
3. But I had symptoms since: May 1998. There are before and after pictures,but I just remember the thirst starting around that time. The Bartters onset was a sudden thing, and up to last year, did not cause many problems.
4. The biggest adjustment I've had to make is:eating on a schedule, eating snacks. When you're a farm girl,you eat around work breaks, not the other way around. I hated being different. Getting on a pump changed that but sometimes you still gotta chase that insulin.
5. Most people assume:that I can do or be anything I want to. Which isn't strictly true..you can't fly a plane commercially or be in the military. The diabetes wouldn't stop from any of that,but the other illness says I've got to be in a civilized country where they can give an IV. And I can't simply have children,thanks to the D.(it's gotta be smack-dab perfect first)
6. The hardest part about mornings are: getting up. I'm not a morning person.(I require 2 cans of Diet Coke before I'm semi-awake)
7. My favorite medical TV show is: Greys Anatomy. 4 MORE DAYS TILL THE SEASON PREMIERE!!
8. A gadget I couldn't live without is: my ibaby.(iphone) If we're not talking medical devices. I LOVE MY IPHONE!!
9. The hardest part about nights are: Unwinding, I don't do that very well. I am a creature of the night. Muscles generally decide to do their cramping then too.
10. Each day I take: insulin via pump, 4 pills. I don't take much, its easily manageable.(in theory)
11. Regarding alternative treatments: Well, I'm not sure there are any in my situation but I'm all for whatever works(and has been shown to be safe)
12. If I had to choose between an invisible illness or visible I would choose: Visible.People can go ahead and get their discrimination out of the way early(instead of slapping it on you later on)
13. Regarding working and career: I don't let my diseases get in the way of what I want to do with my life.
14. People would be surprised to know: That it's hard. It really is NOT a matter of take a shot, you'll be fine in the morning.Sometimes it goes well, and sometimes it doesn't. And it's not your fault.
15. The hardest thing to accept about my new reality has been: that there may never be a cure for diabetes & things may get worse, instead of better. I'm not sure how well I'd cope with some horrible complication. And with the Bartter's, accepting has been hardest with the need for the IV sticks/infusions.Those still suck.
16. Something I never thought I could do with my illness that I did was: pass as a non-D. Haha.
17. The commercials about my illness: don't exist for one, and for the other don't accurately depict life with it.
18. Something I really miss doing since I was diagnosed is: eating half a bag of marshmallows, drinking slurpees, hiking a mountain without going low. Mostly food stuff.(but really, not that healthy anyway)
19. It was really hard to have to give up: Chocolate, and so I haven't.(and I don't believe in giving anything up food wise, but the limit quantity stuff has been really annoying). Spontaneity, with the Bartters.
20. A new hobby I have taken up since my diagnosis is: Writing poetry, blogging. It's how I cope.
21. If I could have one day of feeling normal again I would: Go to the beach, eat and drink to excess & not think about diabetes at all.
22. My illness has taught me: To make lemons out of lemonade. A cliche, I know,but you just have to make the best out of your illness because it's not going anywhere. To be able to help someone else always feels like your illness is not a totally bad thing.
23. One thing people say that gets under my skin is: that I'm not taking care of myself if I have a low, or a high.(in their presence) It's because I'm trying to take care of myself that I don't skulk off and save them having to see that I am human. I hate being judged (morally) for my disease.
24. But I love it when people: do things that show they are incorporating the inconveniences of diabetes into the day...and don't act like its a big deal.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Into each life some rain must fall..some days must be dark and dreary."
26. When someone is diagnosed I'd like to tell them: We're all in this together,& you aren't alone. Don't give up on your dreams.
27. Something that has surprised me about living with an illness is: sometimes you can actually forget about it. And that's really nice,until reality comes whooshing back.
28. The nicest thing someone did for me when I wasn't feeling well was: got me a cold diet coke. Or a cold juice.(for the extremes in blood sugars)
29. I'm involved with Invisible Illness Week because:maybe someone out there will learn something,& treat another with the respect & support we all need.
30. The fact that you read this list makes me feel: thankful that you'd take five minutes out of your day to do so...and hopeful that you will pay it forward!
1. The illness I live with is: type 1 diabetes, Bartter's Syndrome. One is decidedly more impactful then the other..but most chronic illnesses go hand-in-hand with diabetes.
2. I was diagnosed with it in the year: December 1998. September 2005.
3. But I had symptoms since: May 1998. There are before and after pictures,but I just remember the thirst starting around that time. The Bartters onset was a sudden thing, and up to last year, did not cause many problems.
4. The biggest adjustment I've had to make is:eating on a schedule, eating snacks. When you're a farm girl,you eat around work breaks, not the other way around. I hated being different. Getting on a pump changed that but sometimes you still gotta chase that insulin.
5. Most people assume:that I can do or be anything I want to. Which isn't strictly true..you can't fly a plane commercially or be in the military. The diabetes wouldn't stop from any of that,but the other illness says I've got to be in a civilized country where they can give an IV. And I can't simply have children,thanks to the D.(it's gotta be smack-dab perfect first)
6. The hardest part about mornings are: getting up. I'm not a morning person.(I require 2 cans of Diet Coke before I'm semi-awake)
7. My favorite medical TV show is: Greys Anatomy. 4 MORE DAYS TILL THE SEASON PREMIERE!!
8. A gadget I couldn't live without is: my ibaby.(iphone) If we're not talking medical devices. I LOVE MY IPHONE!!
9. The hardest part about nights are: Unwinding, I don't do that very well. I am a creature of the night. Muscles generally decide to do their cramping then too.
10. Each day I take: insulin via pump, 4 pills. I don't take much, its easily manageable.(in theory)
11. Regarding alternative treatments: Well, I'm not sure there are any in my situation but I'm all for whatever works(and has been shown to be safe)
12. If I had to choose between an invisible illness or visible I would choose: Visible.People can go ahead and get their discrimination out of the way early(instead of slapping it on you later on)
13. Regarding working and career: I don't let my diseases get in the way of what I want to do with my life.
14. People would be surprised to know: That it's hard. It really is NOT a matter of take a shot, you'll be fine in the morning.Sometimes it goes well, and sometimes it doesn't. And it's not your fault.
15. The hardest thing to accept about my new reality has been: that there may never be a cure for diabetes & things may get worse, instead of better. I'm not sure how well I'd cope with some horrible complication. And with the Bartter's, accepting has been hardest with the need for the IV sticks/infusions.Those still suck.
16. Something I never thought I could do with my illness that I did was: pass as a non-D. Haha.
17. The commercials about my illness: don't exist for one, and for the other don't accurately depict life with it.
18. Something I really miss doing since I was diagnosed is: eating half a bag of marshmallows, drinking slurpees, hiking a mountain without going low. Mostly food stuff.(but really, not that healthy anyway)
19. It was really hard to have to give up: Chocolate, and so I haven't.(and I don't believe in giving anything up food wise, but the limit quantity stuff has been really annoying). Spontaneity, with the Bartters.
20. A new hobby I have taken up since my diagnosis is: Writing poetry, blogging. It's how I cope.
21. If I could have one day of feeling normal again I would: Go to the beach, eat and drink to excess & not think about diabetes at all.
22. My illness has taught me: To make lemons out of lemonade. A cliche, I know,but you just have to make the best out of your illness because it's not going anywhere. To be able to help someone else always feels like your illness is not a totally bad thing.
23. One thing people say that gets under my skin is: that I'm not taking care of myself if I have a low, or a high.(in their presence) It's because I'm trying to take care of myself that I don't skulk off and save them having to see that I am human. I hate being judged (morally) for my disease.
24. But I love it when people: do things that show they are incorporating the inconveniences of diabetes into the day...and don't act like its a big deal.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Into each life some rain must fall..some days must be dark and dreary."
26. When someone is diagnosed I'd like to tell them: We're all in this together,& you aren't alone. Don't give up on your dreams.
27. Something that has surprised me about living with an illness is: sometimes you can actually forget about it. And that's really nice,until reality comes whooshing back.
28. The nicest thing someone did for me when I wasn't feeling well was: got me a cold diet coke. Or a cold juice.(for the extremes in blood sugars)
29. I'm involved with Invisible Illness Week because:maybe someone out there will learn something,& treat another with the respect & support we all need.
30. The fact that you read this list makes me feel: thankful that you'd take five minutes out of your day to do so...and hopeful that you will pay it forward!
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