You'll have to forgive the bad-quality video taken on the spur of the moment on my old Sony camera tonight, but I caught this story on the local (Minneapolis) news tonight. It is hard to believe that there might be an actual CURE for type 1 diabetes in 2013. I had to upload the video to Youtube because it was too big of a file to download anywhere else. It's about 5 minutes long, and you'll hear me lose it (sobs) about 4 1/2 minutes through it (sorry, didn't know the sound would pick that up). I am still getting teary-eyed even talking about the prospect of an actual cure; something we've all hoped for; something we hoped would happen in our lifetime. Who knew it could be this soon?
Happy day, people.
Click HERE for the video.
Tuesday, September 27, 2011
Tuesday, September 20, 2011
30 Questions for Invisible Illness Week.
Okay, I missed the boat on the Invisible Illness Week (it was last week). So here's my late questionnaire.
1. The illness I live with is: type 1 diabetes, celiac disease and grave’s disease
2. I was diagnosed with it in the year: all in 2010
3. But I had symptoms since: 2010
4. The biggest adjustment I’ve had to make is: managing two medical diets that conflict with each other (T1 and celiac), and having to take a pill with strict guidelines everyday (must be on empty stomach, same time every day, can’t be within a couple hours of any calcium or within 4 hours of any vitamins or birth control pills--grave’s disease.)
5. Most people assume: that I’m sick every day since I have illnesses (not true!)
6. The hardest part about mornings are: Making a concerted, conscious effort to stay positive all day. I actually have an internal conversation with myself upon waking, every day before I get out of bed. I tell myself all the things I'm grateful for.
7. My favorite medical TV show is: dLife on CNBC. I watch it every Sunday night without fail!
8. A gadget I couldn’t live without is: my meter and insulin pump. I quite fancy my CGM, too.
9. The hardest part about nights are: Having too much time to worry about my health and to over analyze things.
10. Each day I take 4 pills & a billion vitamins. And a probiotic and digestive enzymes.
11. Regarding alternative treatments I: believe that diet/nutrition and stress play a bigger role in causing/maintaining illnesses than what doctors emphasize, and that our healthcare doesn’t give alternative treatments enough credit for helping us to manage or ease disease.
12. If I had to choose between an invisible illness or visible I would choose: Invisible because I don’t like people assuming I’m “sick” every day just because I have a diagnosis. Most days I live a very normal life like everyone else!
13. Regarding working and career: I am really interested in diet/nutrition and in the beauty industry. I don’t know which one I’d rather work in!
14. People would be surprised to know: that I have journals that date back 15 years (it’s great to see how my younger self thought, and serves as a great memory of what life was like pre-disease).
15. The hardest thing to accept about my new reality has been: 1. People always looking at me with puppy dog eyes and feeling sorry for me. 2. Realizing how difficult it is to lead a normal social life with celiac disease. That’s been a harder adjustment than the diabetes.
16. Something I never thought I could do with my illness that I did was: 1. find enough meals/food that works for both medical diets! 2. Talk about my diseases without crying. 3. Be strong enough to help others in the same boat.
17. The commercials about my illness: seem to focus on the negatives (like the complications) and don’t focus on how to live well with disease. They make it seem like the best you can aim for is to feel normal, but not happy.
18. Something I really miss doing since I was diagnosed is: eating out without fear of cross contamination. It’s difficult to not be able to eat at most restaurants that my friends can eat at.
19. It was really hard to have to give up: gluten. Definitely harder to give up than anything I had to give up for diabetes.
20. A new hobby I have taken up since my diagnosis is: reading gobs and gobs of health-related books, positive thinking books (channeling Louise Hay!) and healthy, gluten free cook books.
21. If I could have one day of feeling normal again I would: Go out to eat at a restaurant I cannot normally eat at and order whatever I want! With gluten! And high carb!
22. My illness has taught me: 1. That Microsoft Word with always autocorrect the word “carb” to “crab,” so be careful! 2. That you can live a pretty normal life with diabetes and a semi-normal life with celiac. 3. That no matter how good you feel, you’ll always feel different than your healthy counterparts (always feel like you are in a slightly different category).
23. Want to know a secret? One thing people say that gets under my skin is: 1. "My aunt lost her leg to diabetes." 2. "My aunt died from diabetes." 3. When someone asks me if I’ve seen Steel Magnolias,(yep, been asked several times), in case I didn't know what suffering with or dying from my disease looks like. 4. When people say “I give you credit because I could NEVER maintain the diets that you have to” (oh, you mean the ones that keep me alive? Trust me people, despite what you say, you would do it). 5. When people are surprised that someone like me can get diabetes (“you’re too skinny!”)
24. But I love it when people: 1. Try to understand my illnesses. 2. Don’t see me as a sick person.
25. My favorite motto, scripture, quote that gets me through tough times is: It's more like a philosophy than a motto/quote, but health is more than the absence of disease, and therefore, I am healthy/health is within my reach. I can be healthy WITH a diagnosis.
26. When someone is diagnosed I’d like to tell them: Join a support group, especially for celiac disease and join the DOC and read blogs for T1. It will change your life!
27. Something that has surprised me about living with an illness is: 1. You’ll have to think about it every day, forever. There are no more carefree, spontaneous, throw-caution-to-the-wind days, because you will always have to plan ahead for T1 and celiac. 3. That it would open my heart to understanding others with different diseases than mine. I try to put myself in their shoes for their particular challenges, more now than ever.
28. The nicest thing someone did for me when I wasn’t feeling well was: Stay up all night with me when I was scared to fall asleep.
29. I’m involved with Invisible Illness Week because: Well, technically I missed it, because I didn’t know about it (oops). But invisible illness week is important b/c it helps me to remember that there are others with invisible illnesses, and not to focus solely on mine.
30. The fact that you read this list makes me feel: That you are probably in the same or similar boat, or you probably wouldn’t be interested in my blog to begin with! But also makes me feel that you can probably relate very well to the answers I wrote.
1. The illness I live with is: type 1 diabetes, celiac disease and grave’s disease
2. I was diagnosed with it in the year: all in 2010
3. But I had symptoms since: 2010
4. The biggest adjustment I’ve had to make is: managing two medical diets that conflict with each other (T1 and celiac), and having to take a pill with strict guidelines everyday (must be on empty stomach, same time every day, can’t be within a couple hours of any calcium or within 4 hours of any vitamins or birth control pills--grave’s disease.)
5. Most people assume: that I’m sick every day since I have illnesses (not true!)
6. The hardest part about mornings are: Making a concerted, conscious effort to stay positive all day. I actually have an internal conversation with myself upon waking, every day before I get out of bed. I tell myself all the things I'm grateful for.
7. My favorite medical TV show is: dLife on CNBC. I watch it every Sunday night without fail!
8. A gadget I couldn’t live without is: my meter and insulin pump. I quite fancy my CGM, too.
9. The hardest part about nights are: Having too much time to worry about my health and to over analyze things.
10. Each day I take 4 pills & a billion vitamins. And a probiotic and digestive enzymes.
11. Regarding alternative treatments I: believe that diet/nutrition and stress play a bigger role in causing/maintaining illnesses than what doctors emphasize, and that our healthcare doesn’t give alternative treatments enough credit for helping us to manage or ease disease.
12. If I had to choose between an invisible illness or visible I would choose: Invisible because I don’t like people assuming I’m “sick” every day just because I have a diagnosis. Most days I live a very normal life like everyone else!
13. Regarding working and career: I am really interested in diet/nutrition and in the beauty industry. I don’t know which one I’d rather work in!
14. People would be surprised to know: that I have journals that date back 15 years (it’s great to see how my younger self thought, and serves as a great memory of what life was like pre-disease).
15. The hardest thing to accept about my new reality has been: 1. People always looking at me with puppy dog eyes and feeling sorry for me. 2. Realizing how difficult it is to lead a normal social life with celiac disease. That’s been a harder adjustment than the diabetes.
16. Something I never thought I could do with my illness that I did was: 1. find enough meals/food that works for both medical diets! 2. Talk about my diseases without crying. 3. Be strong enough to help others in the same boat.
17. The commercials about my illness: seem to focus on the negatives (like the complications) and don’t focus on how to live well with disease. They make it seem like the best you can aim for is to feel normal, but not happy.
18. Something I really miss doing since I was diagnosed is: eating out without fear of cross contamination. It’s difficult to not be able to eat at most restaurants that my friends can eat at.
19. It was really hard to have to give up: gluten. Definitely harder to give up than anything I had to give up for diabetes.
20. A new hobby I have taken up since my diagnosis is: reading gobs and gobs of health-related books, positive thinking books (channeling Louise Hay!) and healthy, gluten free cook books.
21. If I could have one day of feeling normal again I would: Go out to eat at a restaurant I cannot normally eat at and order whatever I want! With gluten! And high carb!
22. My illness has taught me: 1. That Microsoft Word with always autocorrect the word “carb” to “crab,” so be careful! 2. That you can live a pretty normal life with diabetes and a semi-normal life with celiac. 3. That no matter how good you feel, you’ll always feel different than your healthy counterparts (always feel like you are in a slightly different category).
23. Want to know a secret? One thing people say that gets under my skin is: 1. "My aunt lost her leg to diabetes." 2. "My aunt died from diabetes." 3. When someone asks me if I’ve seen Steel Magnolias,(yep, been asked several times), in case I didn't know what suffering with or dying from my disease looks like. 4. When people say “I give you credit because I could NEVER maintain the diets that you have to” (oh, you mean the ones that keep me alive? Trust me people, despite what you say, you would do it). 5. When people are surprised that someone like me can get diabetes (“you’re too skinny!”)
24. But I love it when people: 1. Try to understand my illnesses. 2. Don’t see me as a sick person.
25. My favorite motto, scripture, quote that gets me through tough times is: It's more like a philosophy than a motto/quote, but health is more than the absence of disease, and therefore, I am healthy/health is within my reach. I can be healthy WITH a diagnosis.
26. When someone is diagnosed I’d like to tell them: Join a support group, especially for celiac disease and join the DOC and read blogs for T1. It will change your life!
27. Something that has surprised me about living with an illness is: 1. You’ll have to think about it every day, forever. There are no more carefree, spontaneous, throw-caution-to-the-wind days, because you will always have to plan ahead for T1 and celiac. 3. That it would open my heart to understanding others with different diseases than mine. I try to put myself in their shoes for their particular challenges, more now than ever.
28. The nicest thing someone did for me when I wasn’t feeling well was: Stay up all night with me when I was scared to fall asleep.
29. I’m involved with Invisible Illness Week because: Well, technically I missed it, because I didn’t know about it (oops). But invisible illness week is important b/c it helps me to remember that there are others with invisible illnesses, and not to focus solely on mine.
30. The fact that you read this list makes me feel: That you are probably in the same or similar boat, or you probably wouldn’t be interested in my blog to begin with! But also makes me feel that you can probably relate very well to the answers I wrote.
Wednesday, September 7, 2011
Diabetes craps on my parade...once again.
Forgive me if this entry ends up rambling and nonsensical. My blood sugar is still really high right now and my eyeballs hurt and I feel awful.
The day started off great with some volunteer work. Afterwards, driving home from downtown Minneapolis, I was in a great mood and enjoying the 74-degree-and-sunny day with the car windows down and Louis Armstrong's CD playing loudly. I almost felt like I was in San Diego (sans the palm trees or ocean views). When I got home, I knew I needed to hit the books before my first class tomorrow night, so I changed clothes, grabbed my book bag and headed off to Caribou Coffee. I was there for about an hour and a half when I started feeling...weird. A diabetic knows exactly what I'm talking about, I don't even need to describe it. It's the feeling of your blood sugar screaming up or down quickly. Next thing I knew Sam the CGM was wildly beeeeeeeping at me, almost as if he sensed something was wrong at the same moment I did. Sam said I was 237 with upward trending arrows. No more than 5 minutes prior, the CGM had been reporting a steady stream of 115-120 readings. My meter confirmed I was higher than that...241. How or why, I have no idea (thanks, liver?). I hadn't eaten anything carby before hand, and had eaten a healthy, balanced meal a couple hours prior with no problems.
After bolusing...and bolusing... and a recheck bg of 259, Sam the CGM is still showing up arrows, so I knew I hadn't reached the peak of what it was going to be. I packed up my bag, and headed for the car, sulking, mad, scared, pissed, you name it. Why does diabetes always have to interrupt important tasks? Driving home, my eyeballs were hurting (again, only another diabetic can truly appreciate what it feels like for your eyeballs to ache)and I started crying. When I turned the power on the radio, it picked up in the middle of the song that I had been previously listening to, What A Wonderful World by Louis Armstrong. So I'm listening to this song, with tears streaming from under my sunglasses, driving home.
I'm home now, waiting for my eyes to quit bugging out and the fog to leave my brain so I can finish my reading. It's not exactly light reading and it requires my full attention.
I'll bounce back; I always do. But there's nothing like a random quick high bg to remind you that you cannot control this disease and sucker punch you in the gut.
Thursday, September 1, 2011
Do you DRINK that????
Nope, it's not stomach bile. It's my breakfast. It's my green juice that I make regularly in my juicer. It consists of 3 broccoli stalks, 3 celery, 3 cucumbers, 3 leaves of romaine or kale, sprouts, and either a couple baby carrots or a 1/2 apple. It's gluten free, tastes pretty good and gives me more energy than any cup of coffee ever could (well, I don't drink caffeine, so that could be why). Trying to figure out how to bolus for it is, well, another story. That's a whole lotta veggies... in juice form (read: instant blood sugar affecter). But I could never eat that many veggies in one day, so it's kind of nice to drink it down in a matter of seconds.
Diabetics will never have clean sheets.
I must have had a gusher during the middle of the night. I routinely wake up and check my bg in the middle of the night without turning on the lights. Sometimes I do almost all of it with my eyes closed, only peeking to see what the number is.
This morning I woke up with finger poke -sized blood stains and smears all over the place, like under my pillow. Then when I checked my bg on my PDM, I saw that the buttons were all bloodied up, too. Yep, must have had a gusher last night and didn't even know it.
Every set of sheets I own have finger poke blood stains on it. It's inevitable. I was mad because I had just bought a new, expensive set of sheets from Bed, Bath & Beyond and within a couple days had new stains on it. I guess that's just part of Big D, never having clean sheets.
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