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. đŸ™‚ 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!


Coming out of the pancreatic closet

May 6, 2010

Last year I was lucky to be able to attend DTreat (a retreat for young adults with type 1) at Villanova. We had a ton of different discussion sessions. But one thing really has stuck out to me and I’ve been pondering it ever since.

One person asked how you go about telling people you have diabetes. I honestly was kind of stumped. I realized that I very rarely have that thought in my head. I never think “Shoot. How will I tell this person I have diabetes?” It usually comes up in casual conversation for me. I guess it happens because I’m so comfortable with treating my diabetes in front of people. I wear my pump hanging off my pocket. It beeps obnoxiously every once in awhile. I have no problem whipping out my meter just about anywhere and everywhere. So when I meet someone new and I need to test, it kind of just comes out.

The only time I’ve ever really thought “I guess I should tell this person” is when I’m starting a new job or I’m in a situation where I think others should know for my own safety. And usually it’s just something along the lines of “Hey, just FYI I’m diabetic, so if you see me munching or playing on my ‘beeper’ that’s why.”

So, it’s something I’ve become kind of curious about this topic. Is being afraid to tell people about your diabetes a sign of just not being comfortable with diabetes itself? How do you fix this problem? I felt so bad because the person at DTreat was asking for advice, and I really didn’t know how to help.

How do you come out of the pancreatic closet???? Do you feel the need to come out of the closet with your diabetes? Do you feel the need to hide it at times?

I just started reading Cheating Destiny: Living with Diabetes by James S. Hirsch and he talks about Elizabeth Evans Hughes. Elizabeth was one of Banting and Best’s first patients to receive insulin. She had prolonged her life using a starvation diet long enough to see the discovery and mass production of insulin. She survived with little diabetes complications until she passed away in 1981. Her story is frankly amazing. But what is really crazy about it to me, is that she refused to let anyone know she was diabetic. Even her own children didn’t know until they each turned 18! Hirsch points out that Elizabeth could’ve been the poster child for insulin and living well with diabetes, but she stayed in the “pancreatic closet.” Her story could’ve actually saved lives, but for whatever reason (and in the book Hirsch theorizes about why) she kept it all to herself.

I feel like a major reason I have never kept my diabetes a secret because I want people to know what life with diabetes is really like. A lot of times people have questions. And I love it when they ask! Some people apologize for asking so many questions, and I usually respond with “Please ask whatever you want! I’d rather you understand!”

I guess it’s hard for me to understand why someone would hide their diabetes, but then again I am comfortable enough with my diabetes to share it with the entire internet. Can anyone offer any insight here?

I got some bad news today

November 23, 2009

Let me start by giving you a little history of my experience with doctors and diabetes. From diagnosis (at age 3) until last year (with only a brief hiatus when I was young) I had been going to the same doctor. He technically was not an endocrinologist, but was a pediatrician who specialized in children with diabetes. He was my lifesaver. He was also the doctor at the camp I’ve gone to since I was 7. In fact, he’s pretty much the reason why I started going to camp in the first place. He got me on the pump. He was amazing. I’m pretty sure I ended up being his oldest patient ever. I was 22 when I had my last appointment with him. And the reason I stopped going to him was because he was retiring and downsizing his patient load. We ended every appointment with a hug. He came to my wedding. We danced at my wedding. He was/is very important to me! I trusted him with my diabetes for nearly 20 years.

The timing kind of ended up working out perfectly. Jeff and I were engaged so I knew I was going to be moving to Virginia.

I, however, was very worried about trying to find an endocrinologist to treat my diabetes. I had actually seen endos in the past but only for my thyroid because I was diagnosed with Grave’s disease a few years ago which is a form of hyperthyroidism. None of my experiences with these doctors were very pleasant. The first doc I saw was ok even though she had a very thick accent and was hard to understand at times. Everything she said did make sense according to all of the research I had done right after my Grave’s diagnosis. I lost that doctor because something happened with her visa and she was no longer able to practice. The last thing I want is to have my doctor constantly changing. It’s much better to have a doc who knows your patterns and your history.

The next doc I saw was really freaking scary. He was very old. He told me he doesn’t “do” insulin pumps. He also almost poked my eyes out when measuring my eyes (enlarged eyes is a symptom of Grave’s). No really, he almost poked out my eyes. He made the measuring thing so small that instead of touching the very outside corner of my eyes, it was going to go directly into my pupils. The look on my mom’s face was classic. And I’m pretty sure I backed away pretty dramatically. He also only took this measurement once so I’m really not sure how he would be able to tell if my eyes were changing in size.

So, the point is, I was really not so excited about having to find a full time endocrinologist to take care of my diabetes.

However, I pretty much I hit jackpot (again). I did some research online and ended up finding an incredible doctor! He has a private practice here in Charlottesville which is co-owned by an internal medicine doctor. It is a small practice. There’s no revolving door of doctors. I was even more excited when I found out that this endo is actually diabetic himself! At my first appointment we discussed different types of pumps and meters and CGMS. He told me about all kinds of research that’s going on. I was in diabetic heaven! He also hooked me up with every lab test necessary. I had never been tested for a Vitamin D deficiency before and it turns out I am actually deficient in Vitamin D. My new doc explained to me that there are studies going on linking D deficiencies to autoimmune disorders including diabetes and Grave’s disease. I felt like so much of my life had been explained. I looked at the timing of my diagnoses and the depression I tend to go into in the winter time. It just felt really good that it could be the answer to my life long unanswered question of “Why me?”

Jeff and I have also been going to the other doc in the office as our primary care physician. He is simply… amazing! He has helped us so much. Jeff hurt his back about a month after the wedding and has been on medical leave. And our doc has done literally everything possible to make Jeff feel better and make him as healthy as possible.

Jeff had an appointment with our PCP today and I tagged along (like I usually do because it’s like visiting family). In the middle of the appointment our doc says, “Ooooooh I have some bad news for you guys… We’re moving.” I felt my heart hit the floor! It turns out because of some changes to the Virginia State Constitution in recent years which are incredibly discriminatory, our doctors have to move because their lawyer doesn’t think their business and finances are safe. Virginia apparently is very harshly and extremely against gay marriages, civil unions, or any kind of domestic partnerships to the point where they are driving all of the gay couples out of Virginia. Lovely.

So, my doctors are leaving me for a state that will welcome them with open arms. And I don’t blame them. But now I am stuck going through the process all over again. I’ve been pretty depressed all day. I’m really hoping I can get lucky for a third time but I know the chances of that are slim. I am constantly hearing stories from other diabetics about how they hate their endos. Not to mention I will likely have a PCP who is clueless about diabetes. Ugh.

I really wish the Virginia House of Delegates and most of the Commonwealth’s voters weren’t bigoted jerks. I really wish they would realize how their stupid and discriminatory amendment was hurting more people than they realize! Charlottesville is losing two of its best doctors and it’s solely the fault of the awful amendment.

Bedtime can be a nightmare

November 20, 2009

Lately (and by lately I mean for the past year and a half) my biggest problem with my blood sugars has been at bedtime. Last August I had a scary one. This was before Jeff and I were married and I was living at my parents house in PA. I apparently went incredibly low sometime in the early morning. I also apparently had conversations with my younger brother (who was unable to realize I was low at first) but I don’t remember anything until I came-to in the hallway outside my room with my dad standing over me pouring Coke in my mouth. It’s so incredibly scary when this happens! But it makes me glad that I’ve never had to live alone.

That morning my mom called me to ask me a question (I of course was still in bed). She thought I sounded funny and was worried (she’s my mom) that this was more than sleepiness so she called my brother. He came in and said something to me and I responded so he told her that I was fine. She still didn’t think I was fine so told him to go in again. He tossed me a little tube of glucose tabs which apparently made me angry. My brother apparently started to realize something was up. So my mom called my dad because he was able to get home quicker. When I was finally conscious I learned that he had put that gross gluco-gel stuff in my mouth which made me cry (which I found funny after the fact since we always joke at camp about how nasty it tastes). I also was apparently fighting him and he had to restrain me to treat me. Needless to say it was an incredibly bad low. I’ve only had a few like this before but this is probably the worst I’ve had since going on the pump 10 years ago.

So, that’s how I finally realized I was having lows in the middle of the night. Since then, I have NOT been able to get my overnights under control. I have gone to the doctor many times since then and even switched doctors. I’ve changed basal rates and they work for a couple weeks and then I just start dropping again. I don’t understand it all.

The reason for this post today is because for the past week and a half I’ve been using the basal pattern that I use for certain times of the month when my blood sugars tend to be lower even though it isn’t actually the time to use it. I keep dropping. I don’t feel comfortable going to bed unless my BG is in the 200s. Which really isn’t good in the long run, but I’m just so afraid of dropping in the middle of the night.

Last night I checked about an hour before bed and I was 130. I ate a pack of crackers. An hour later, I was still 130. Whaaaaat? So I set my basal rate back to 75%. And I woke up 250! UGH!!

In conclusion, I absolutely HATE bed time. It’s so stressful for me and makes it hard to sleep and hard to have decent blood sugars.

Fear and frustration

November 14, 2009

Welcome to my new blog. Here I will share my life with diabetes with the world and anyone who will listen. I’d like to start with my general thoughts about diabetes and living with a dependence on insulin.

To me, the worst part about diabetes is not the finger pricks, the shots, the pump, or the needles. It in fact makes me cringe when I hear people talking about their diabetes and all they do is try to convince people that needles are the worst part. It is far from the worst part. In fact, I think it’s the easiest part. I can live with needles and pumps.

To me, the worst part is the fear  that comes with diabetes. I live in constant fear of low blood sugars. Maybe it comes from the years of constant lows and insensitivity caused by 10+ years of taking NPH. Maybe its from a classmate in college dying from a low blood sugar because no one was around to see him seizing. Either way, it is what I am afraid of every second of the day. I’m also afraid, however, of high blood sugars. I am scared of puking. I am scared of losing my kidneys. I am scared of heart disease. I am scared of going blind. I am scared of losing my feet.

Frustration is also one of the worst parts of diabetes. It is frustrating when no matter what I do, my blood sugars don’t make sense. It is frustrating when family members gasp at my numbers and tell me I don’t know what could happen (despite having lost several friends to diabetes complications). It is frustrating when people ask if I have diabetes “real bad” because I’m on insulin. It’s frustrating when a nurse says to me “But you’re so young to be on insulin!” It’s frustrating knowing that despite all of the effort I have put into controlling my diabetes for the past 20 years, 4 months, and 13 days, I will still likely die because of this disease.

On this World Diabetes Day, I ask all of you to think about what diabetes truly does to people both physically and mentally. It is important to express your fears and frustrations in any way you can. Let it out. Let the world know. Let them know that this disease isn’t something we can live with and be normal. Maybe when more people know how devastating it truly is, they will start taking us seriously.