The time, energy and intellectual capacity of being a pancreas is daunting. “I am often the only person around who needs to do complicated mathematical equations before eating anything, before going anywhere, before mowing my lawn, shoveling snow, taking a walk, or before going to sleep at night. Diabetes is always on my mind, whether I like it or not,” writes Scott K. Johnson. Diagnosed at age 5 with Type one diabetes, Scott knows what he is talking about.
The Work of the Pancreas
The pancreas is an amazing organ. Through the release of insulin, the pancreas monitors the energy needs of the cells in the body. The subtle dance of glucose monitoring is done without thought, every moment of our lives. However, for those with type one diabetes, that dance has to be performed through finger pricks, test strips, injections and careful monitoring of food intake, physical exercise and stress. Life with diabetes is about being aware of how these interactions affect blood sugar and insulin needs. No wonder Scott states, “Living with diabetes is very hard and takes a lot of work. In an average day I won’t cross paths with anyone who really understands….The isolation is crippling at times.”
Scott’s Diabetes Blog
Writing has been Scott’s salvation. “I was diagnosed so young. I can’t remember much about it, but I have to figure that I didn’t understand much of what was happening. As I grew up I started to experience…the weight of it. These thoughts and feelings started to bubble to the surface, and I struggled…I found writing to be helpful in dealing with that,” he relates.
Scott has created community online through blogging at Scott’s Diabetes and co-hosting DSMA (diabetes social media advocacy) Live, a blog radio program. Through these mediums, Scott has a devoted following of people experiencing diabetes.
Highs and Lows
After nine years, he’s posted on just about everything. He provides honest discussions of the highs and lows (literally) of blood glucose management. “Almost every low blood sugar is a bit scary. They (the lows) trigger a …instinctual survival reaction. It’s terribly hard to stay calm and treat the lows sensibly,” says Scott. “I had a handful of bad lows when I was younger where I passed out or had seizures during the night. I also had a low that caused me to pass out on Christmas Eve Day last year. That was the first time in twenty years that I passed out from a low, and it really shook my confidence.”
Physical Activity
Yet Scott doesn’t let his fears take over his life. One of Scott’s passions is being physically active, even through participation in extreme sports. “Last year I won a scholarship from TeamWILD for a cycling training program. I used it to train for a 100-mile bike ride, which I successfully completed in June, 2012,” he says. He used this experience to perform “mini-experiments” on himself to see how his body and blood sugar reacts to exercise. “Little experiments, lots of testing, lots of keeping notes,” he explains.
Having Support
“The exercise of assigning words and phrases to what was going on in my head and heart was therapeutic for me,” Scott relates. But he is also interested in educating about diabetes with a section of his blog entitled “Type 1 University.” And he’s grateful to his fellow bloggers and online friends, “Thankfully I have the diabetes online community to turn to. They get it. They understand. They are there 24×7. It’s a beautiful thing. I don’t know what I’d do without them.”
If you, someone you care for, or someone you know, has diabetes (any type of diabetes), be aware that Medivizor provides personalized health information and updates for each individual’s specific situation. It’s free and private to sign up.
My diabetes specialist tells me in not a typical type 1 or a typical type 2 in somewhere in-between like a 1 and a half!!!! Constant unlevel sugars with hyper and hypo’s weekly, suck of never knowing how i feel from day to day xx
Thank you for commenting…Yes, they do call LADA Type 1 and a half… LADA usually starts up later than Type 1 Diabetes.
Yes in newly diagnosed round 5 months ago before i turned 33,, its totally changed my life for the worse, i constantly feel ill on a daily basis xx
Hi Emma,
Thanks for taking the time to comment.
Diabetes is a tricky thing, and even after all this time I’m still learning about how to manage it.
There are a few books that I can recommend to help you make some sense of things. They might help you better understand some of the things happening and what you can do about them.
“Think Like a Pancreas” by Gary Scheiner.
“Pumping Insulin” (if you’re using an insulin pump) or “Using Insulin” (if you’re not) by John Walsh & Ruth Roberts
and
“Your Diabetes Science Experiment” by Ginger Vieira
All three/four of these are jam packed with information and are written for average patients like you and I – meaning there’s not a bunch of fancy doctor talk or language that’s hard to understand.
And of course, there are a ton of PWD’s (people living with diabetes) running around online that are happy to talk with you. You’ll have to know that nobody online should be giving you medical advice (how much insulin to take, etc). That sort of thing should be done by your doctor or medical care team. But we’re really good at answering other sorts of questions or just talking about how things are going and what options might be available to talk about with your doc.
I hope that some of this was helpful. Hang in there, Emma! You can do this!
Hey there, I have been Type one diabetic for 5 years. I use an Animas Insulin pump, and things have gotten a lot better. I have a skin condition called, Necrobiosis Lipidcodica Diabetrum. on my legs. They told me is very rare. Mostly occurs in females. and there is nothing they can do for them, and they never go away. Lows scare me the most. Orange juice never woks for me either.
Thank you all for sharing. Supporting and empowering each other is key!
Hi Julia!
Thanks for taking the time to comment!
I’m glad to hear things have gotten better for you. It’s a long road, and any bit of improvement is great.
I’d never heard of that skin condition until today – thank you for educating me about it. Sounds like it’s no fun. I’m sorry you have to deal with that on top of the ups and downs of blood sugar management (as if that’s not enough, right?).
I’m right there with you on the lows. It’s so hard to think straight and treat rationally when I’m low. I’m trying to get better at sticking to glucose tabs to treat them, but it’s hard.
I was diagnosed about 4 as a Type 1 and Type 2. In the beginning I did really well with dealing with all of this but for the last year or so, it is like I have given up. I was tired of doing 4 shots a day and testing at least 4 times a day and because my sugar was so high I also had to keep an eye on keytone levels. My last A1C was 8.6. I am now back on track but still have days where I wonder if it is all worth it. I do all my shots and oral insulin, watch what I eat and can’t get my sugar below 160. It is very frustrating.
Hi Dondi!
Thanks for taking the time to comment!
You were diagnosed with type 1 and type 2? That’s interesting – does it mean you are resistant to the insulin you need, or that you need high doses?
I totally understand what you mean about it being frustrating and exhausting, especially when you’re trying hard and doing everything you know to do and are still not seeing the results you would like to see.
Do you see an endocrinologist or diabetes specialist? How about a certified diabetes educator? There is a lot of help out there, but sometimes you have to do a lot of work to find the right match. It’s hard, especially when you’re at your wits end just trying to make it through a day, but it’s worth it if you can find the right people to help you.
Hold strong, Dondi! You can do this!
Yes it does mean that I am also insulin resistant. I do shots before each meal, 120 mcg each time. And I also take long acting insulin in the morning and in the evening. Plus oral insulin after every meal.
I do go to an endocrinologist on a regular basis now. I had stopped going for about a year. No reason, I guess just giving up. But then I started to have issues walking and with my feet. So I decided to go back. We are still trying to get things under control. I don’t experience any lows just a lot of highs. Especially in the morning. I can go to bed with my sugar being around 130 and wake up with it over 200. My endocrinologist wants my sugar below 100 when I get up in the mornings. I just don’t know how to make that happen. Any suggestions?
I’m glad to hear that you’re going to your endo regularly – that’s my main suggestion for getting things under control.
It’s a long process, and diabetes is a fickle thing. We have so many variables to deal with.
It might be worth asking if your endo has a CDE (certified diabetes educator) that you can work with as well. Sometimes they can spend more time digging into the nitty gritty numbers with you.
The most important thing is to never ever give up. Keep your chin up, and keep making steps towards better, even if they are little tiny steps.
You can do this.
Type 1 diabetes, commonly known as insulin-dependent diabetes mellitus (IDDM), is a type of diabetes that affects sugar metabolism. It is caused by the development of autoantibodies such as islet cell antibodies and insulin antibodies against beta-cell antigens by macrophages and T-lymphocytes. It usually starts in children and young people. As a result, it is also called as juvenile diabetes. Furthermore, the incidence of type 1 diabetes has increased in the last decade, affecting the young generation’s quality of life.