Tag Archives: University of Chicago

Why going to the endo is like math class

D E B U T S I N G L ERemember when you used to take tests or quizzes in math class and the teacher would tell you that “you have to show your work or else you’ll only receive half the credit”? First of all, I should be allowed to do math in my head, even though I get it, they wanted to cut the cheating out. Secondly, I hated getting the answer right but the “steps in getting to the answer” wrong. Isn’t there more than one way?

Yesterday, I had a visit with my endocrinologist who I hadn’t seen in a year. This was due to being laid off my job a year ago and finding health insurance again. Going to see a world-renowned endo is pricey! Along with getting to see all my doctors again (yay!), I get my supplies, insulin and everything else I need to get my a1c back down (it was a 7.9). It’s not terrible, but I was doing much better this time last year. I actually thought it was going to be higher!

With that said, I took the time to tell my doctor about the issues I’ve been faced with and really, nothing has changed since the last time I was there– besides the fact that I wasn’t checking myself enough due to a shortage of supply. I feel like most of the time, it doesn’t matter if you have diabetes or not, doctor’s advice is usually the same: Do more exercise, lose more weight, you’re doing fine, at least you’re alive. We’ve all heard it.

This time though, I was scolded about not wearing my CGMS, which I admit slipped to the wayside, again due to shortage of supply. But, not to fear! I’m back on it.

As I was sitting there with the doc, reviewing the printout of history from my pump, what I call my diary because, well, they know EVERYTHING just from looking at a few numbers on paper… and graphs, and charts, and totals, I saw the scatter of numbers throughout the pages. Most notably were the days where I checked only once or not at all.

**[If you know anything about diabetes and this isn’t the first time you’ve heard of this situation, you know how important it is to check yourself. I’ve written about it here. The doctor refers to not checking as the “dangerous road.”]**

This is when the guilt sets in. There are days when you wake up and you just don’t want to deal, so, putting your health at risk, you don’t. It’s not to say that it is the right thing to do, but it happens. For those who don’t have diabetes, let me just say, it gets exhausting. Always thinking about what you’re eating, the amount of sugar, carbs, counting, shots, boluses, double checking how you feel, checking blood sugar, making sure you’re on top of your life! Numbers– all numbers, all the time. So even though it sounded like a good idea to skip on checking out where you were and how you were doing in terms of blood sugar levels, it’s not in the long run and you look like a bad student at the doctor’s office.

At this point, I’m too old to shout out, “But my a1c was a 7.9! That’s still pretty good!” But that’s how I felt. It was a sigh of relief, it was a way to loosen the hook I’d always be on with my diabetes. But you know what? I didn’t show my work.

When the doctor downloads all the information that my purple insulin pump stores in its computer system, he sees what’s going on like when I drop and when I’m too high and all that jazz– my personal life and what my insides are doing. The graphs and charts are only possible with data, but if I’m not checking myself or wearing my CGMS there is no data. The data here is the long division work I did in my head and didn’t show on paper. The a1c result is the answer that I got kinda right. The only reason it isn’t in the “correct” spectrum is because I didn’t show my work, thus slipping up in the end.

Because I didn’t do the work, my doctor couldn’t tell me how to fix it. As much as this is about pricking your finger and sampling some blood, NOT doing actual facts and figures in your head, you’d think it’d be easier, right? Well, besides my need to ration supplies, it’s easy to forget to check. I’m running to work, I’m busy at work, I’m running home, I’m running around, living life, doing things and then, “Oh, shit! I have to check myself!” Does that not happen to you? It happens to me all the time, which is why the CGMS is good for me. It’s stuck there and that’s it. It tells me when to check and I’m good. For the most part. Technology has been known to fail.

So based off of what he knew for sure, he changed my basal rate, changed my carb ratio and sent me on my way for blood tests.

Usually, when I leave the doctor’s office, I’m known to dwell too long on the whole ordeal. I cry most of the time as a release of energy, anxiety and stress that living with diabetes brings about. I’m reminded of everything I have to do to not die a slow and miserable death, and at the same time, I swear that I’m going to change. The difference this time was that I had company and I had to explain things. He told me that I wasn’t perfect, that I’m human and that he was going to support my habits that I intended to build on. I didn’t cry but instead I accepted the fact that I do what I can and sometimes, things don’t just go the way you want them to.

Life is a tumultuous rollercoaster on its own. Sprinkling in some much needed care adds a little anxiety, but more, it adds the motivation needed to feel better and more in control. In the end, I’ve realized that in order to take control of my diabetes, I’m going to have to do the work and hopefully the more corrections I make on my process, the better my results will be.

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A Glass Of Water After Loads Of Mud

Yesterday I had the opportunity to be consulted by one of the best endocrinologists in the nation and the world. You know how that feels? It feels like a cup of hot chocolate during a blizzard. Or as my friend once put it, “A glass of water tastes good after trying to drink mugs of mud.” It feels something like that.

When it comes to having the opportunity to see and be checked out in a leading research hospital, recognized by the National Institutes of Health as one of seven Diabetes Research and Training Centers in the United States, I’ve realized that I’ve come a long way in my diabetes care. If you’ve followed the blog, you’ll know that just last year I didn’t have any insurance whatsoever and now, now I was sitting in front of a scientific expert when it came to something I’ve been living with since I was 7 years old. I was thankful, grateful and thirsty for as much information as I could get my ears on at the moment.

Dr. Louis Philipson is the director of the Kolver Center at the University of Chicago. This experience was my glass of water. Here’s what his bio says about him:

For more than 25 years, Dr. Philipson has tirelessly explored the biophysical, molecular and genetic aspects of insulin secretion, and the genetics of diabetes. He and his colleagues discovered rare insulin gene mutations that produce beta cell ER stress and, in turn, cause neonatal diabetes.

In addition, Dr. Philipson and his colleagues are among the nation’s leading experts on monogenic diabetes, following more than 100 patients diagnosed with neonatal diabetes and many others with maturity onset diabetes of the young (MODY) type diabetes. He also serves as co-director of the Human Islet Transplantation project at the University of Chicago.

I mean, not just a few months ago I had a nurse telling me that I should not check myself so much because I only had one test strip Slide1to work with a day! Now I was learning from one of the best. I could have talked to him for hours. I’m a nerd for Diabetes. I want to know about every aspect of it and write about it. I want to tell the diabetes story and share what I know.

The body is miraculous and the reason as for why mine has broken down, or just stopped working is beyond me, but because it affects over 350 million people in the world and not just ME, I want to know what and how and what part I play in a cure.

The idea of experiments, trying new things and ultimately sharing findings is exciting to me. And let’s not even begin to talk about technology. If you are a person with diabetes or are close to someone who is, you are quite possibly a tech geek in the space that has increased its following 10-fold over the past few years due to the leaps in technological advancements when it comes to checking blood sugar levels, administering insulin and even gauging all of that information into devices that make it easy for people to analyze.

I am NOT a numbers person, but when it comes to seeing all of the information my pump gathers, I freak and flip and try to figure out how to get those numbers down and where they’re supposed to be. Would I like to do that for fun for something else? No. But show me, tell me about diabetes glucose numbers and watch me want to fix it.

But it all starts with self management. There was a sign in the examination room that basically stated the questions that people should ask when it came to seeing the doctor. I learned this a long time ago and since then I’ve opened up to my doctors and tell them everything that I know, all that I’ve done and I asked questions.

Before seeing Dr. Philipson, I saw Susan, the diabetic educator, and I told her my entire life story. I mentioned all the doctors I’ve seen, (it’s a total of six now) the fact that I blog, volunteer, do a radio show and am actively trying to kill the stigma that exists out there. I explained my lifestyle, the things I’ve tried, what I’m bad at (mostly just checking blood sugar when I have my CGMS in and at using the bolus wizard) along with what I know how to do.

I was referred to as an old pro. I just wish I was getting paid for the management that I go through! I told them about twitter chats for DSMA and how I feel when I share the information that I come across and know.

It’s important that the doctors know me as much as I know them. And not just the doctors, but the team. We know that diabetes affects every part of your body. We also know that everything we do, down to stress levels, affect our blood sugars and hence the severity of diabetes (whichever type you have). If I can walk in to the doctor and talk about stress levels and learn more in-depth as to how it all affects me, I’m going to be a happy camper and they’re going to understand what I’m going through.

In the end, we all search for understanding and acceptance. We, as PWDs, are not by-the-book experiences. You can’t figure us out with a formula. It’s hard for even significant others to understand what you’re going though and surprisingly  there are still many of us who don’t know anyone IN PERSON with the type of diabetes we have. We are plagued with thinking like an organ and we won’t be taken down because of such a situation.

Hard to get, right? But that’s why, when you find someone who understands and can explain and push you in the right direction and be a cheerleader and tell you how to help yourself WHILE at the same time looking for advancements in how to make your situation less burdensome, it’s almost a miracle.

This blog is just one part of the whole. I want to wait for test results from the six tubes of blood they took out of me to get into the nitty, gritty scientific stuff. A lot of what Dr. Philipson told me had to do with other patients, studies and hypothetical situations of various forms of diabetes. It’s also cool that he explained the “Dirt Theory” about Type 1 diabetes in children, that Scandinavia has the highest rate of Type 1 diabetes and that genealogical-ly speaking, you have to consider so much when talking about hereditary diabetes among Latinos because of all the places we come from! I mean, you can’t expect too much. It was only the first appointment!

So, stay tuned for the next one friends and thanks for reading.

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