That awkward moment when…

September 26, 2012

It’s a popular phrase on the internet these days. I feel like it pops into my head with dealing with diabetes. 

Yesterday I had one of those moments. And man, it really sucked. It’s Restaurant Week in the nearby town of Hershey. My boyfriend (Michael) and I decided to take advantage of the 3 course meal specials and hit up the place that is normally THE most expensive restaurant in the area… the Circular Dining Room at the Hotel Hershey. It was great! I had a birthday cake martini! Then we chose a yummy local wine and ordered our food. They brought us a selection of bread (complete with CHOCOLATE bread – AKA a brownie – and CHOCOLATE butter), and I actually ate it. Normally I think the bread is just extra carbs. But this stuff was GOOD! I had a fresh, tasty Cobb salad with some incredible guacamole. Then out came my chicken and dumplings with wild mushrooms. So yummy. 

But that’s where the trouble started. All of a sudden this delicious food seemed incredibly unappetizing. The room seemed to increase in temperature at a drastic pace. My heart was racing. I knew what this was. I whipped out my meter… 507. Son of a…. I ran to the bathroom and took an injection. I pulled out my site (which I had just put in before we left the house) and a nice big drop of blood formed. SIgh.

And this is where it gets awkward. We were in a really upscale, classy place. The food was fantastic. I hadn’t even finished my entree, and I knew I had a fantastic dessert on its way (I ordered the chocolate cheesecake). The trouble was… I didn’t know what to do. Could I ask for a box? Is that acceptable a place like this? Should I sit and wait out this feeling? I probably shouldn’t eat the cheesecake even if I feel better right? I felt so… awkward. And it made me angry. Angry at my diabetes for putting me in this awkward situation. I HATE when this kind of crap happens. 

Luckily, our server was very observant. Apparently he could tell I wasn’t feeling so great. He came over and asked if I was finished. I reluctantly said yes, and he brought me a box. Yes! And my boyfriend asked if it was possible to get a box for our desserts too. He said ABSOLUTELY! He even offered to get a cork for our wine, but it was almost finished and I knew it wouldn’t really mess up my blood sugar to finish it. He told us that a lot of people won’t take to go boxes home, but he thinks it’s silly. I told him I want to eat it but I couldn’t at the moment, and he said he was very glad to help us and that he’d rather the yummy food not go to waste. 

So… all in all, it ended up ok. It’s just so hard to forgive diabetes for putting me in situations like this. 


My thoughts on reversing type 1 with diets

May 29, 2012

There always seems to be a new fad in dieting and “healthy eating.” Right it seems that the paleo diet is the latest craze in healthy eating, but really there have been countless other types of fad diets out there that become a craze at some point. I have nothing against anyone choosing any type of diet if it works for them. I’m also totally fine with people talking about the choices they are making, starting conversations about healthy eating, and being open to answering questions about their diet. I am, however, against anyone saying that ANY DIET will reverse type 1 diabetes (I’m pretty uncomfortable with anyone saying they can reverse type 2 diabetes too but that’s a whole ‘nother blog post).

Here’s a list of my thoughts and reasons why it’s wrong and offensive to tell me a diet will “reverse” type 1 diabetes:

- Type 1 diabetes is an autoimmune disorder. Neither I nor my parents did anything to cause my diagnosis when I was three years old.
- No matter what I eat, my body still needs insulin. It takes 24.45u of basal insulin to be exact (it takes LOTS of time & energy to figure out this number). This insulin works to counteract the glucose that my body naturally creates for energy, so even if I don’t eat anything at all, I still need 24.45 units of insulin to make it through the day.
- Type 1 diabetes is IRREVERSIBLE! No matter what I do, I will always have type 1 diabetes.
- Telling me that your diet will reverse my diabetes makes it sound like you think I am ignorant about diabetes, when I can guarantee you that its quite the opposite.
- Insisting that I am doing something wrong in terms of my diabetes is rude even if you think you are just “informing” me about your diet.
- If there was a way for me to stop taking insulin, I would do it. No matter what it takes. But THERE ISN’T!
- Telling newly diagnosed people or families with diabetes about your “type 1 reversing diet” gives them false hope. It’s unfair and downright mean.
- The best diet for a person with type 1 diabetes is whatever that person and their medical team figure out is the best for them.

I’m sure there are other things I could add to this list, but that’s just what’s been swimming around in my brain for the past few days. If you have any to add, please leave them in the comments because I’d love to read them! I know it’s so frustrating for me and for my friends with diabetes to have to deal with this kind of thing. It’s hard enough to juggle different aspects of diabetes and hearing this stuff just… sucks. So please, if you or someone you know is trying to spread this kind of information, please let me know how truly hurtful it is!


My thoughts on JDRF and the “c” word…

February 3, 2011

 

Catch me if I fall
I’m losing hold
I can’t just carry on this way
And every time
I turn away
Lose another blind game
The idea of perfection holds me
Suddenly I see you change
Everything at once
The same
But the mountain never moves
-The Cure

There are a lot of things that have been spinning around in my head for a while now that I’ve finally decided to actually write about. These thoughts have been fueled by a lot of things in recent months. It all really started with the inpatient artificial pancreas trial that I participated in a few months ago, which happened to coincide with the FDA Artificial Pancreas Workshop and lots of discussions that followed amongst members of the diabetes online community. These thoughts have certainly resurfaced because of the recent JDRF Research Summit held by the Capitol Chapter of JDRF and because of a recent Children with Diabetes forum discussion about the new President and CEO of JDRF. I don’t want to get into what was said in that thread in particular or my opinions on what people had to say. I just wanted to start out this post out with some background information that might make it easier to understand where I’m coming from and why I’m even writing this. I’m sorry if it comes off mostly as rambling, I’ve had a lot in my head and getting it out feels fantastic!

First off, I just want to say that I think an important role of JDRF is to stand up for ME and the entire diabetes community and represent us when addressing the government and society as a whole. Nothing made me want to devote my time and money more to JDRF than seeing Dr. Aaron Kowalski stand up at the FDA workshop and passionately confront them about why people in other countries have access to life saving technology and we do not. He was speaking for us with conviction and most importantly with the credentials to be taken seriously by the people who are making these types of decisions. I want my money to go to and organization like that. I am also very grateful to JDRF for allocating money to studies that would prove the efficacy, safety, and need for Continuous Glucose Monitoring so that more insurance companies would cover it for more people. It’s just another example of JDRF making sure that we are being heard and getting what we need to live successfully with diabetes.

I guess there aren’t many people out there anymore who remember the days of JDF. Ya know, before that pesky “R” was added to the acronym.  When I was a kid, the Juvenile Diabetes Foundation was not just for research. It always had a lot to do with research, but it also was about support. I know that my local chapter was founded because parents of children with diabetes and adults with diabetes needed a place to share experiences and meet others dealing with the same issues. They even had a social events committee!  My diabetes camp was actually founded because of funds allocated to that committee. When I was diagnosed in 1989 my family was very involved in JDF and in camp. We raised money for the walk every year, and we attended many events. However, once that “Research” word was thrown into the mix, my camp was sold and social events were no longer held. This, along with my increasing age, is what really drew me away from JDRF many years ago. It wasn’t until recently that I’ve gotten more involved again because of a lot of the changes that have been happening to take JDRF back to what it was originally. I love that they are reaching out to more people. I love that they realize how important outreach is to the community. I am really excited about the vision of JDRF’s new president, and I think it’s a great step forward to helping more people.

That being said, I’d like to address a few things that people seem to have a problem with in terms of JDRF, what they fund, and the elusive cure. I’ve heard/read many complaints about specific types of research that is going on and I would like to share my thoughts on them.

Anyone who is familiar with research that is going on right now and how the research and approval processes work, is acutely aware that we are nowhere near a cure right now. Honestly, it’s been quite awhile since I’ve even heard someone at JDRF say that we were 5-10 years away from an actual cure. And that is because no one has a clue how close we are to a cure. Researchers are constantly finding interesting ways to cure diabetes in mice, but none of them have ever really come close to working in humans. I really think that JDRF has become much more honest with its donors recently about this topic. I think it took them awhile to really get to a position where they even believed it themselves. This why the new President wants to shift the focus of what is happening at JDRF to include more things that can happen UNTIL there is a cure. It was mentioned several times at the Research Summit that diabetes is not simple, it’s not easy, it is complex, and it may not even be a single disease.

Something that was also discussed a lot at the Summit was preventing diabetes, and I’ve heard a lot of complaints about why JDRF should support people who don’t even HAVE diabetes yet. But this is actually important to all of us. Not just because we don’t want our children to become diabetes, but also because preventing it means answering one really big question. WHY? Why does diabetes happen? If we knew why it happened, and knew how to stop it, we’d be a huge step forward in reversing it as well. It seems that the major obstacle of making islet cell transplantation and stem cell research legitimate forms of treatment is that the immune system of someone with type 1 diabetes will usually attack those insulin-producing cells again. If researchers were able to turn off the autoimmune response in someone who would otherwise become type 1 diabetic, they might be able to turn off the same response in someone who is already type 1. There have even been studies that show that it could be possible to simply regenerate your own islet cells once that response is turned off.  Essentially, being able to prevent diabetes also means CURING diabetes.

I don’t think it’s a secret to anyone that I’m a big fan of the artificial pancreas project. I’ve seen a lot of people recently (and not so recently I suppose) who are frustrated with the JDRF for funding the Artificial Pancreas Project, and even more specifically some people who are upset about JDRF’s partnership with Dexcom and Animas. I think there’s a lot of confusion about this partnership and how the artificial pancreas project is actually working and what it’s purpose is.

JDRF is not just dumping money into private companies to help them make something they are going to make and sell anyway. One of the important roles of JDRF in this process is to coordinate research between different entities. Right now there are several sites doing research to find a predictive algorithm that would work in an artificial pancreas. They are each a little different. For example, Massachusetts General is working on a bi-hormonal device that uses glucagon along with insulin to prevent and treat low blood sugars. Meanwhile, at the University of Virginia (where I have participated as a subject) they are studying an algorithm using a low suspension technique, which only uses decreases in insulin doses and basals to prevent low blood sugar. These test sites have different techniques and tests but they are all testing an algorithm, which will do basically the same thing: dose insulin based on CGM data to obtain tighter glycemic control. They all also use different kinds of equipment all that is currently on the market in conjunction with a computer that contains their specific algorithm. For example, the inpatient study I participated in at UVA used a Dexcom 7 CGMS to measure my blood sugar, which was sent to the computer, and an older version of the Omnipod PDM to deliver the doses of insulin recommended by the computer. So, all they are testing at these hospitals is the algorithm. JDRF has teamed up with Dexcom and Animas to try to develop a device that would be able to effectively contain all the components of an artificial pancreas: CGM, algorithm, and pump. It is an important aspect of development in creating a useable device that will be available to the public.

What I want for the future of treatment is for any device that will be able to relieve of us of the hardest parts of living with diabetes. What most people don’t understand is that the needles, pricks, tubes, and machines are definitely NOT the hardest part. I’ve blogged about this before, but I can never say it enough. The hardest part of diabetes is the fear. It’s being afraid to fall asleep and not wake up. It’s being afraid that every little mg/dL point over normal is one tiny step closer to debilitating complications. I can deal with the rest. I’m pretty sure anyone could if they had to. It’s the fear and frustration that makes diabetes so hard to live with.

I wouldn’t say that I have lost faith in finding a cure. I hope everyday for a true 100% cure will happen in my lifetime. But, I’ve known so many people now that had that same hope and did not live to see it. I’ve come to accept that it might not happen… that I don’t NEED it to happen. I DO NOT NEED A CURE FOR DIABETES. What I need is my feet, my heart, my eyes, and my kidneys. I need to live a long, healthy life. I will support whatever cause I think will make that happen. Right now, I whole-heartedly believe in the Artificial Pancreas Project, the JDRF, and the hundreds of people who are working hard to research and make tighter glycemic control a reality for those of us who are living with type 1 diabetes.

It really pains to think about the people I’ve known who fought so hard against this disease and fought so hard for better treatments and better lives and who are no longer here because those treatments never came. Those people are why I’m fighting for MORE than a cure!

In memory of… Nikki, Barry, and Cynthia.


UVA Endos Speech

September 2, 2010

First off, I love my new diabetes educator. She is awesome. She loves my outlook on diabetes and totally agrees with it. Despite not being diabetic or having a kid with diabetes, she seems to understand a lot about daily life and frustrations of dealing with it every second of the day. She also understands, however, that she doesn’t know it all. And that most doctors sure as HECK don’t understand it. So…

She has asked me to speak at a luncheon for the endocrinology fellows at the University of Virginia (where I am currently a patient). I’m very excited… but very nervous. I’m not the most comfortable at public speaking. Although, most of the major speeches I’ve given in my life were about diabetes, and I feel pretty darn comfortable talking about it. But this…. this is different. I will speaking in front of my own doctor as well as the doctors who are working with me on the study I’m in (more on that once I’m finished with it). And all of the other endocrinologists at UVA which has a very prestigious and well established program.

My speech is going to be titled, “A Patient Perspective on CGMS and Insulin Pump Therapy.” So I think I will basically tell my story from the beginning. I guess they’re mostly used to hearing complaints about CGMS so my CDE wanted me to talk about my positive experiences with it. I also want to talk a bit more broadly about why I’ve been soon successful in diabetes in general. I want to tell them that the best way to live with diabetes is to live with a positive outlook. I want to tell them they shouldn’t scold patients or blame them for bad numbers.

I want to make this speech… not boring. And I want it to be effective. And informative. They’re giving me an entire hour to speak too! So I want it to be long enough. Ha!

I guess what I’m saying is… does anyone have anything they think should be included in such a presentation? I want to make sure I cover all the bases and get the whole message across! Oh and my speech is October 19th. So I have awhile to figure out my presentation.


Diabetes Art Day

September 1, 2010

I know I stink at posting… but sometimes I just get inspired. And boy was I inspired! Leann over at The Butter Compartment had the brilliant idea of claiming September 1st as Diabetes Art Day. People all over the internet (and all over the world) are participating so I thought I should too. I’ve been considering doing an art project for awhile now because I am obsessed Leann’s diabetes-supplies-are-art-supplies concept. So I finally had an excuse to get off my butt and do it. And it came to me so quickly. This piece didn’t take me long but it means a lot to me. It’s made ENTIRELY of diabetes supplies. There’s no paint or glue or anything else! Here it is! (I apologize for the terrible photo quality. I’m not sure where my camera cable is and was too excited to post to go find it. So I used my iPhone.)

Here it is up close:

Well there it is. The flower is definitely my favorite part. But I love that it’s “growing” out of the mess of diabetes supplies. The “vase” part is actually a Troparocka Snapple bottle. So the mess is being held together my support and hope. Yeah, I know. It’s cheesy. But I had fun. :) The “mess” is pretty much everything you need if you have diabetes. It’s test strips (some used, some not… I found a bunch), old insulin vial, resvoirs, tubing, lancets, syringes, pen caps, alcohol swabs, cracker wrapper, etc. And the “blood” is actually control solution. Close enough! Oh and the stem of the flower is juice box straws. My project is now sitting on the window sill in our kitchen. Not sure what I’ll do with it. Hopefully someday I’ll have some sort of “office” devoted to diabetes to put it in.

So there it is! I’m loving seeing everyone’s art projects today! And I definitely recommend that others poke around at some other diabetes blogs and check them out!


Why should you care about diabetes camp?

May 26, 2010

First, a little announcement/disclaimer from me: I have recently been hired as the Camp Director for the Harrisburg Diabetic Youth Camp. I am thrilled about it and excited to make camp successful for many years to come. This post is directly dealing with camp and why I think it is important so I just wanted to put that out there so you all know the perspective I’m coming from now. I’ve always been very pro-camp and have always done whatever I could to promote but it is kind of my job now. However, I’d be writing this post no matter what and this post has absolutely nothing to do with me being camp director. Ok, now that that’s out of the way…

Since it’s Spring, and almost Summer, and camp is sneaking up on us, and since there has been a few mentions of diabetes camping thanks to Bret Michaels’s appearance on Celebrity Apprentice, I thought I’d write a post about WHY diabetes camp is important. I know a lot of people might not think that it is. I know that a lot of people might equate diabetes camp to some other kind of camp like basketball or drama or girl scout camp. They think it’s just a grouping of kids who have something in common, and it’s not a huge deal.

Our mission at HDYC has always been to give kids a normal camp experience. Our founders wanted to give kids with diabetes the opportunity to have the same camping adventures that their non-diabetic peers were having. Since then, however, camp has evolved into something far more important than just a campfire and a sing-along (although those are clearly important to the whole experience).

To put it simply, diabetes camp is extremely beneficial to children with diabetes. There have been many studies done to prove this including on in Turkey, one at the Joslin Diabetes Center, and one that Setebaid Services (the organization that runs my camp) has participated in. Kids who attend diabetes camp learn more about diabetes management and how to independently care for themselves. Kids who have attended camp have a better knowledge of their own care.

How and why does diabetes camp make such a positive impact on kids? Well, for many reasons. As we all know, people with diabetes have a much higher risk of developing depression than people who don’t have diabetes. The stress involved with dealing with this 24/7/365 disease can make anyone feel pretty awful, especially if a person has no outlet. Isolation is a huge problem when it comes to diabetes. People with diabetes often feel like they are all alone and no one understands them. This can make caring for the diabetic body even more stressful and difficult. Camp helps resolve this problem. When you come to camp, you meet all kinds of people with diabetes who are willing to talk about anything and everything involved with diabetes. Most campers and staff members keep in touch year-round, especially now that things like email and Facebook exist.

These people are also a fantastic resource for any problems you might be having. From where to try a new infusion site to how to bolus for something crazy to “OMG I ran out of test strips and can’t get anymore,” there is almost always someone to help you out. Some of the people at camp have had diabetes for decades, and can offer the best advice you could ever ask for. Most kids with diabetes see an endocrinologist and some see a diabetes educator, but there is nothing like learning from someone who lives with diabetes everyday.

I like to think that one of the major reasons I am so healthy today is because of camp. It has kept me sane through nearly 21 years of living with diabetes. I met one of my best friends at diabetes camp. My whole life has really been better because I went to camp. I know a lot of people don’t  have quite this much of an attachment to camp, but most are very positively influenced by it and would probably say it changed their lives for the better. In fact, I’ve gotten in contact (thanks to Facebook) with several of our HDYC alumni, and they all still talk about how much they loved camp.

If you or your kiddo hasn’t been to camp, please think about going! And you don’t have to be a camper to go to camp! Being a counselor is just as rewarding. Check out the Diabetes Education and Camping (DECA) website to find a camp near you.

And if you’re looking for a diabetes-related cause to support other than the big ones, please consider donating to your local diabetes camp! It may not sound as important as research for a cure, but it really truly helps keep people alive and healthy!


My support team

May 12, 2010

 

The Diabetes Blog Week topic of the day is about who is the biggest support to you. The trouble is, I don’t have just one person! I have a whole family. My parents are the ones who keep me going and make my life just a little bit easier when it comes to diabetes.

My parents have literally been there for me since day one. I was only three years old when I was diagnosed so they were the ones who were taught everything there is to know. They are the ones who pricked my tiny fingers and gave me my shots and managed my food exchanges. My mom and dad also instilled me what I like to call the “look the other way” mentality. When we’d go to a restaurant or we were out in public, my parents told me not to hide my finger pricks or my shots. They said if someone has a problem, they can look the other way! I really think this had a huge positive impact on my self esteem when it comes to diabetes. My parents have always been positive about diabetes. It was never been about scary complications. It was never about “bad” blood sugars. It was just about doing whatever possible to stay healthy and live life to its fullest. It was about not letting diabetes tell me what I can or can’t do. Their positive attitude with me and diabetes has totally shaped my view of it, and has made me the healthy, complication-free diabetic I am today.

As I’ve grown up, the responsibility for my diabetes gradually passed on to me. By the time I went away to college I was in full control of my diabetes management entirely. Which is probably my control went a little haywire. My A1C creeped up to the highest it had ever been (although not as high as a lot of other people I know with diabetes), and I wasn’t paying as close attention as I should.

Of course I also have to give honorable mentions to my HDYC family and the Diabetes Online Community for being there when I need someone who “just gets it” or I have an crazy question about something diabetes related. You all rock and have been a huge help to me.


Follow

Get every new post delivered to your Inbox.