Wednesday, May 29, 2013
So my church will be having vacation bible school soon. And they are collecting supplies. Like you do.
Boxes are being collected for the kids to make robots.
Some lucky kid will make a really kick ass robot with my sensor and set boxes. This makes me happy.
Friday, May 17, 2013
"Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)"
I can't pretend to know what it's like to live with any chronic condition other than Type 1 Diabetes. I really can't.
But what I can do is empathize with anyone living with any chronic condition. As different as it might be from diabetes, there are still some things that are the same.
I've written about this before, especially in regard to a couple books written by Richard M. Cohen.
I have Type 1 Diabetes. That's the chronic condition I live with. I know the ins and outs, the frustrations and joys. The things that it's impossible to know unless you live with T1D. That's what makes the Diabetes Online Community so magical. Talking with people who have the same chronic condition is a powerful thing.
In high school, I had the amazing opportunity to serve on the Teen Advisory Board at my local children's hospital. I will always be grateful for that experience. It was the first time I learned that chronic illness of any kind has a common language.
There were five or six of us on the board with T1D. But the board represented the entire hospital. There were several teenagers living with cancer. A girl living with Chron's disease. A boy with Cystic Fibrosis. And I'm sure there were others--it was a long time ago.
The hospital was a familiar environment for all of us. That's why we were there. And I didn't feel alone. These other kids spoke my language. The language of chronic illness.
If you live with or love someone with a chronic illness, than you know the language. The hospital visits and doctor's appointments. Dealing with health insurance companies. Trying to figure out how to pay for what insurance doesn't cover. Finding the right doctor. Finding the right medications. Dealing with medication side effects. Adjusting to new/worsening/changing symptoms. Worrying about the future. Worrying about loved ones. Dealing with the psychological and emotional consequences of chronic illness. Taking care of a chronic condition day after day, while still having a life. Trying to hold onto your sanity.
Since high school, I've met other people living with different chronic conditions. Rheumatoid Arthritis, hypothyroidism, bipolar disorder, clinical depression. And I'm very close to some amazing people living with Multiple Sclerosis, Alzheimer's disease, and chronic migraines.
I cannot know what it's like to live with any of these conditions. But if you live with any chronic illness, we do share a common language. There is much that is the same. And we need one another to make it through.
"The world breaks every one and afterward many are strong at the broken places." - Ernest Hemingway
Thursday, May 16, 2013
"We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)"
What have I accomplished? Quite a bit. I made it through a series of low blood sugar seizures. I got an insulin pump. Went to Italy with my high school choir. I transitioned from my pediatric endo to an adult endo. I went to college. Spent three weeks in Great Britian. Graduated college. Fell in love and got married. Have a job I love. Spent years struggling with depression, anxiety, and binge eating. Was finally able to ask for help and see the light at the end of the tunnel.
There are a lot of things I am proud of. But most of all, I agree with Kim. The biggest accomplishment for all of us living with any kind of diabetes is to simply live our lives. To keep putting one foot in front of the other. To go after what we want in spite of diabetes, and to not let it stop us.
We choose how we live our lives. Diabetes doesn't. That in and of itself is a victory.
"Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)"
"MEMORY! ALL ALONE IN THE MOONLIGHT...."
Am I the only one singing? Yes? Ok, I'll stop then.
There are a lot of memories I have that involve diabetes. But all of them pale in comparison to a huge gift diabetes has given me.
Friends. These friends I met only because they all have diabetes. Nothing this disease throws at me will ever compare to this.
|Photo courtesy of C|
|Photo courtesy of George|
|Photo courtesy of Kerri|
*I know not all these pics are mine. If I owe you a photo credit, please let me know!*
Wednesday, May 15, 2013
"Back by popular demand, let's revisit this prompt from last year! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?"
When anyone asks me what my dream diabetes device is, my answer doesn't change: an artificial pancreas. A system that uses continuous glucose monitoring to manage my blood sugars without me having to do it. I'm fine with still checking my bgs to calibrate the device. But I want the AP to do the rest. To automatically adjust basal insulin when needed. To bolus the necessary insulin for whatever I'm eating without me having to figure it out. To have glucagon or some other method to raise my blood sugar when it drops too low.
This is what I want. Ok, so what I'd really love in a cure, but since I don't foresee that happening anytime soon, I want an artificial pancreas. More than I can convey with words.
"Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see? (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)"
If you've been reading this blog for a while, then you know how much I LOVE my endo and CDE. I absolutely adore them.
They don't read my blog, but they know about it. They know how involved I am in the Diabetes Online Community. And they know how much you all have helped me.
My endo and CDE are both quite supportive and understanding. Especially my CDE. She has great empathy for her patients, and that comes across in her interactions. I felt safe enough with her to ask for help.
If my endo and CDE were to read my blog, I hope they would see that I try. I try damn hard. We all do. Some days are easy, some days are impossible. That a person's A1c is not always the best indicator of their health.
For any medical professional who might read this blog, this is what I want you to know: empathy and empowerment inspire change. That's what we as patients need.
Thursday, May 9, 2013
A lot of things about living with Type 1 Diabetes have changed since I was diagnosed almost 20 years ago. (EEK! 20 years! I'm not old enough for this!). New insulins, better technology, and more research have all led to significant changes in how people manage their diabetes. I am no exception.
One thing that has also changed: the way we deal with food. I was diagnosed under Ye Old Exchange System. A set injection of Regular insulin, a set number of exchanges of carbs, protein, and fats allotted at each meal. This is just how it was. The exchange system was what doctors believed to be best at the time. And for some people, it was and may still be the best thing. But it wasn't for me.
Today, the exchange system has pretty much (thankfully) gone by the wayside when it come to Type 1 Diabetes. We count and bolus for carbohydrate content, not exchanges. Yes, protein and fats sometime require insulin as well, but that's a whole 'nother blog post.
Another pearl from the exchange system? No sugar. As in none. As in my mom would buy me sugar free chocolate as a treat for dinner sometimes. I only ate sugar free ice cream. Trick or treating on Halloween? You betcha! Eating any of the candy I collected? Nope. Cake at a birthday party? Maybe sometimes, only if the frosting was scraped off first.
Is it any wonder that a lot of adults with Type 1 Diabetes have a skewed relationship with food? Sheesh. Not the best environment for fostering a healthy relationship with food. I was discussing this with my mom, and looking back, she feels terribly guilty. About the disordered eating I have now, as if she could have stopped it.
Mom, it's not your fault. Not at all. You did exactly what the doctors told you to. What they thought was best at the time. The exchange system was the standard. In no way is any of this your fault. Besides, disordered eating is complicated, as are the causes.
Today, I am SO HAPPY to see many posts and pics from parents of children with diabetes that show their kiddos having fun. Eating some of their Halloween candy. Enjoying some cake or a cupcake WITH FROSTING at a friend's birthday party. It makes my heart sing!
Thankful is how I feel. Thankful that the exchange system is gone. That the psychological and emotional well-being of the children is important too. That no foods are completely forbidden. I'm not advocating that kids eat junk all the time. Nobody needs that, diabetes or not. But to be included with your friends. To eat that birthday cake and have fun. I'm sure this makes some parents want to pull their hair out, because these things aren't nice to blood sugars. But a few high blood sugars on special occasions is, in the grand scheme of things, not that big of a deal. I think it's a small price to pay.
I truly and sincerely hope that future generations of kids with diabetes will have healthier relationships with food when they grow up. I hope for this with all my heart.
Wednesday, May 8, 2013
There aren't many times when I actively hate diabetes. The past few days, however, has been one of those occasions. Constant high blood sugars for no apparent reason. Four pump sets in 48 hours. I haven't been binging, so that's not it. I'm not sick. I have no idea what's been causing this mess.
I've seen more numbers starting with a 2, 3, and yes, even 4 in the last two days than I care to think about. Yesterday was especially bad. I was stuck in the low 400s for hours.
Yesterday was the worst diabetes day I've had in a long time. I HATED diabetes, with every fiber of my being.
Today has been better. I'm sitting at 212 post lunch right now, but after the last 36 hours, I'll take it. This is all especially frustrating since I have my endo appointment next week.
The one saving grace about yesterday? The brand new Dexcom sensor I put in yesterday morning was spot on from the get go. So at least there's that.
Oh well. As my grandma always says, "This too shall pass."
Thursday, May 2, 2013
I am hard on insulin pumps.
It happened again. A crack appeared in my pump. This one was bigger than usual too! A full centimeter long.
A quick call to Medtronic customer support, and a replacement pump was on the way. I love their customer service! Although, I do have one critique. Can they be some kind of bypass system for people who've replaced more than 5 pumps? I don't need the whole spiel- I've heard it all before. The rep was cracking up because I just kept saying "Yup" as he read through the script.
Goodbye, my poor old worn out, scratched, and cracked pump. Thanks for taking care of me.
And on an unrelated note, Medtronic also sent me a new pump clip free of charge, I think since I've had to replace mine a couple times. And it's one of their new clear ones! Pretty fly, if you ask me. (And sorry about the white bubble- had to cover up some stuff.)
*Medtronic sent me a replacement pump as part of my warranty. I did receive the pump clip free of charge, but was not asked to blog about it or my experience with their customer service.