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Posts Tagged ‘diabetes’

Okay, let’s get this party started off with a refresher course on the basics, shall we? I hear a lot of collective groaning out there, but are you THAT sure that you REALLY know what type 1 diabetes (T1D) is? For my T1D friends, feel free to check my work. But for everyone else, really, read it. You might be surprised at what you learn.

Type 1 diabetes is an autoimmune disease. That right there usually comes as a surprise to many people. This means that I didn’t eat too much or the wrong kinds of foods. I didn’t take poor care of myself and I wasn’t born with it. Well, I was born with a defective gene but that didn’t come into effect until I was seven years old. Many people with T1D remember being sick with a virus shortly before their diagnosis. I am no exception. I remember being on a tennis court with a friend one day that summer and telling my mom I wasn’t feeling well. Sure enough, I had a fever. The fever lasted three days and then all was good again. Until it wasn’t.

My immune system was apparently so proud of the work it did eradicating that virus that it wanted to do more and do it well. My immune system took a good hard look at the insulin-producing cells (islet cells) of my pancreas, determined them to be foreign, and destroyed them.

Now let’s pause there for a second and talk about insulin and why it’s important. When I go around to schools and talk to kids about diabetes I like to refer to insulin as a “golden key”. So imagine that the cells of your body are locked up tight and imagine that when you eat, insulin runs through your body like a magical key rapidly unlocking your cells so that the nutrients from the food you eat can nourish you and allow the glucose from food to enter the cells and be used for energy.

Without insulin, the glucose builds up in the blood stream and never gets into the cells. The cells starve and the build up of glucose in the blood stream can become deadly. When this process began for me, I lost a LOT of weight and I didn’t have a lot to lose in the first place. I was thirsty ALL THE TIME. Not a, “Gee, I’d really like a glass of water.” kinda thirst but a get-kicked-out-of-day-camp-for-pushing-kids-out-of-the-way-to-get-to-the-bug-juice-first kinda thirst. (True story. And if you don’t know what bug juice is, you are a very lucky person indeed.) This thirst is caused by the kidneys’ desperate attempt to create more urine to flush the dangerous build up of glucose out of your system. I was hungry and eating all the time, peeing all the time, losing weight (even though I was eating a ton) and generally just wanted to sleep.

So, I was diagnosed with T1D. This meant that for the rest of my life (or until there’s a cure) I would need to take insulin through shots or an insulin pump in order to stay healthy or even just alive. The body cannot survive without any insulin. Staying alive, however, is not the only goal of living with type 1 diabetes. A person with T1D must do their absolute best to monitor their blood glucose levels, insulin dosages, food intake, exercise, stress levels, illnesses, and thousands of other factors to keep their levels in “target range”. This effort is essential not only to feel good, but also to avoid dangerous long-term complications such as blindness, nerve damage, damage to organs such as the heart and kidneys and a myriad of other health issues.

There currently is no cure, T1D is a chronic disease. The care of T1D has changed A LOT in the almost 33 years since I was diagnosed and keeping my blood glucose levels under control has gotten easier – but it’s still not easy and never will be. I’ll explain more about how I manage my diabetes in another post, but I credit organizations like JDRF for much of the technology and medications I use to treat this disease. JDRF’s highest priority remains funding research to deliver a cure for T1D and its complications. At the same time, JDRF is also focused on developing better treatments that will and have transformed the way people with T1D treat the disease today, in order to help them live healthier lives now and in the future.

This is why I Walk.

Helpful Links:

For more information on type 1 diabetes

To donate to my Walk & 5K Run to Cure Diabetes Team

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Sooooooo, it’s that time of year again. The time when I ask for money. “Wha?!?!?” You say. “That’s not all year round….?”

Shuddap

Anywho. The South Central Texas chapter of JDRF is holding their annual Walk & 5K Run to Cure Diabetes on October 19th, 2014 at the UT Health Science Center. However, that’s not actually why I’m blogging for the first time in a year and a half. Not entirely, anyway.

I’m starting up again because it has occurred to me that in all my efforts to look like I’m living successfully with type 1 diabetes (T1D), in the process I am actually KEEPING many of you from learning about it. A few of my close friends are probably sick of hearing about it, true, but I can think of only one or two who have, on more than one occasion, asked me several really good questions about it.

I just thought that since I don’t really delve into the nitty-gritty of it without being pressed, I might make it a point to write several little vignettes (blogettes?) over the course of the next couple of months to see if I can’t teach someone something new.

And if it makes you maybe want to donate to a really fantastic cause that means a lot to me, then WIN!

I’ve already thought of a number of topics but I thought I’d ask you if there’s anything you’ve wanted to ask but were too cautious or afraid of offending me. Here’s your chance. Comment below. I’ll answer anything – yes, even the question about what I do with my pump during “extra-curricular” activities (it comes off – like everything else). Anything.

And if you do feel like donating to my Walk team during this process, you can do so here.

Thanks as always for reading and stay tuned for an honest look at living with T1D.

 

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Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.

There’s a blogger with a post that I REALLY want to comment on. I found it completely by accident one day when I was surfing Facebook or Twitter (or both) and happened to click on a link that interested me for whatever reason and was astounded by what I read. This person has MG (myasthenia gravis) first and type 1 diabetes second. I specifically mention them in that order because this is how the writer presents them to her reader. She’s had MG longest and explains that type 1 diabetes came along but is mostly viewed as a secondary annoyance rather than a primary concern.

What?

Wait.

Huh?

It blew my mind. The idea that someone could consider the disease I’ve struggled with for almost 32 years to be a secondary concern made me stare at the computer screen as though the text had suddenly become written in a language I didn’t speak. But then I stopped and thought about it. And came to the realization that I do the very same thing. I too have two chronic diseases – type 1 diabetes and Rheumatoid Arthritis (RA). I also specifically talk about them in that very order.

Type 1 diabetes was my original diagnosis from when I was seven years old. I was diagnosed with rheumatoid arthritis when I was in my 30s. Maybe it’s the age at diagnosis, maybe it’s the perceived cellular damage from the disease, but diabetes has always been my primary concern. RA has remained more of a, well, nuisance. When I was first diagnosed I was heartbroken. When I researched the chemotherapy medication my doctor wanted to put me on (whose list of side effects includes DEATH) I was fearful. However, when I finally got over my self-pity party I actually thought, wait, I just need to take a pill for this? BRING IT ON. After diabetes it just seemed so simple.

So I read this person’s blog and had an epiphany. There are people with RA reading my blog and thinking the same thing. These are people who’ve suffered much worse with this disease and can’t imagine placing another disease in a higher priority. It made me think about that fable. You know, the one where a group of people go in a room and put all their troubles on a table and have the option to take someone else’s? That’s right, the one where they end up taking back their own troubles and going home.

I would so totally do that with type 1 diabetes – it’s the evil I know.

 

I would comment on the blog that inspired this post – only I can’t find it! I’ve looked everywhere. I know it’s out there though, so if it’s your blog, please let me know and I’ll comment. In your post, you had mentioned that MG means you have to rest and diabetes means you have to exercise (if that helps)…

 

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Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

My favorite social network when it comes to my health issues is Twitter. I love it. A lot.

While it’s a lot like shouting your thoughts out in a megaphone in the middle of Times Square, it’s somehow more intimate than Facebook at the same time. Maybe because the people on Twitter have a genuine interest in what you have to say and what you’re going through. I mean think about it – on Twitter they could follow ANYONE. There’s no limit, no friendship required, they CHOOSE you. When you send a friend request on Facebook out to anyone really, there’s SOME kind of social obligation to accept it for the most part. You’re friends, family, coworkers, fellow high school alumni, or you know you’re going to keep seeing this person at parties for the REST OF YOUR LIFE and don’t want to be confronted as to why you never accepted their friend request. (People really do that – it’s awkward.)

But on Twitter you just put some information out there – my profile mentions my type 1 diabetes and rheumatoid arthritis – and suddenly a world of people interested in what you have to say or in similar situations opens up to you. The Diabetes Online Community (DOC) in particular, is amazing. I’ve made friends, found doctors and information on updated medical equipment and pharmaceuticals, and found people experiencing the same thing AS ME. It’s inspiring, comforting, empowering.

So, in short, I love Twitter. And to my 600+ followers – thank you.

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Patients, what advice or tips do you have for caregivers out there – professional or otherwise!

For parents of kids with type 1 diabetes I offer this advice:

Please don’t attempt to bully your child into taking better care of him or herself. It doesn’t work. Do not tell them how their kidneys will go or that they’ll go blind if they don’t take better care of themselves. The truth of the matter is that some people with type 1 diabetes develop complications regardless of how well they remain in control. Sure, the Edmonton Protocol gave us great insight into the fact that better control means less complications, but it’s not a guarantee.

All you’ll end up doing is making your child more afraid that he already is. OR, even worse, you’ll give him the idea that nothing they do will be good enough so why bother trying at all.

It’s easy and tempting to threaten and cajole because you’re scared to death yourself. I get it, I’m a parent too. But try to stop yourself. Please just try. It doesn’t work.

Beyond that, listen. Your child needs support and someone to listen when he tells you that it’s just not fair. It’s not fair. The best you can do is somehow, someway, get them to try their best regardless.

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Well, I blogged every day of April but two. Hey, they SAID I could skip two!!! So I did. It was fun, not as stressful as I thought it would be, and maybe JUST MAYBE I’ll blog a little more often now. We’ll see.

My Favorite Post(s):

My personal favorite was the superpower one. This is something I’d been wanting to write about in some form or another – the idea that just because you have one chronic disease, doesn’t mean that you’re immune (pun intended) to other illness.

The post that others seemed to like the most was the letter to my 16-year old self.

And the one that just made me giggle to myself once I got going was the Cure post. To all of you who have landed on my blog looking for a cure for type 1 diabetes (and according to my stats there are A LOT) – I’m so sorry for raising your hopes falsely. Please, please don’t take my cure seriously. PLEASE. Also, there is no cure for diabetes. I’ve been dealing with this for almost 31 years already so I’m not even going to say, “YET”. But it’s chronic. If you want a cure, donate to JDRF.

My Least Favorite Posts:

I’m not even going to link to them, but they were the goofy ones: Haiku, madlib, those kinds of things.

To whomever is reading this; I hope I haven’t bored or annoyed you this past month. It was mostly an exercise to see if I could do it. And like so many other things in my life – I did!

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Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/

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