Stereo"types" of Diabetes

“I’m FAT”.

Those two self-deprecating words have rolled off my tongue several times in the last few weeks….way more than they should. The only person who has heard me say this, is my husband, Dave, who always replies, “No, you’re not. You’re beautiful”. I’ve decided that he’s either a really good liar or he’s actually telling the truth. Ok, I really don’t think he’s lying but I wish I felt the same about myself as he feels about me.

Maybe I should rearrange my thinking and re-phrase that: I feel fat. And I think like I look fat in recent photos that I had to un-tag myself in on Facebook. I removed the images not only because I didn’t like how I looked but also because I felt some guilt in how I looked in the photos.

That irrational cringe of guilt stems from an unfortunate, yet common stereotype of diabetes – that if you’re overweight and you have diabetes then you basically ate yourself into the disease. The problem is that this isn’t necessarily true, especially not true for type 1, or juvenile, diabetes. Type 2 diabetes is more commonly associated with weight and eating habits but even with type 2, it doesn’t mean that it’s that persons fault for developing the disease.

One of the most common questions I get about diabetes is “What is the difference between type 1 and type 2”? Although my answer may not be the most scientific, this is my response: Type 1 is often diagnosed in people under 40, requires insulin injections to control, and occurs when the pancreas completely stops producing insulin. Type 2 is mainly diagnosed in older adults, (although we are seeing an increase in younger ages), it can usually be controlled by diet and exercise instead of insulin but not always, and sometimes, the pancreas is still producing insulin but the body just isn’t using it appropriately.

The stereotype that unhealthy lifestyles and weight is what causes diabetes is frustrating because the last thing I want people to think is that I did this to myself or that my weight is a reflection on how well I manage my diabetes. This is the exact thought that went through my head as I hit “Remove Tag” on Facebook. Even though I know it’s not true, I know that so many others don’t know that.

I have to remind myself of that and remind myself that I am taking good care of myself. I try and eat right, I exercise 3-4 times a week, I check my blood sugar, bolus insulin through my pump, try to keep a positive attitude, and try to educate people .

There are so many resources available to research and learn more about all types of diabetes. These sites can give you more scientific information than I can, so check ‘em out:

American Diabetes Association: www.diabetes.org

Central Ohio Diabetes Association: www.diabetesohio.org

Diabetes: 0, Fear: 1

Sometimes, I take things too seriously. I have a tendency to over-analyze a lot of things, letting my thoughts create something that isn’t real. In some ways, I am embarrassed of my last blog entry in that I let the fear get the best of me. But when the Gastroenterologist told me yesterday that he admired how well I was handling having diabetes and celiac disease, I realized that I cannot feel self-conscious of my own honest and true feelings. I cannot be embarrassed of researching symptoms, playing out the scenarios in my mind, being proactive about my health.

I think the Dr. was impressed that I was interested enough in my health to do the research on my symptoms. He said that most people he sees that are facing the same challenges as I am, are “mad at the world and feeling sorry for themselves”, (I’m guessing he didn’t read my last blog entry).  Thinking of my last entry, I said to him, “I’m not going to lie, sometimes it’s very frustrating and difficult”. And some days it is. Last blog entry was just one of those days.

Diabetes is no joke. It is not something to take lightly. Sure, I could relax a little bit and try not to worry until there’s a legitimate reason to. But with this disease, I have to stay hands on even if it means researching the tough, “can’t go there”, stuff like gastroparesis.

I’m happy to report that the Dr. does not think that I have what I feared. He gave me some medication to alleviate the heart burn and nausea, in hopes that it will help with other symptoms I am having. We talked about gastroparesis and how harsh the medication for this is on someone’s body, causing muscle twitching and cardiac problems.

This is one of those “can’t go there” moments but we went there and instead of feeling fear, I felt inspired.  Inspired to continue researching, to continue to be proactive, to continue to fight this disease, to overcome the challenges I’ve been given.

Facing the Fear

At 27, sometimes I feel like my body is failing me, like I’m just waiting for the next thing to go wrong. I feel like I’ve been living in fear since the day I was diagnosed – fear of passing out from a low, fear of complications, fear of losing a limb or even my life. I even feared writing this blog entry because this is the scariest part of diabetes and sometimes the reality of it is just too hard to take. But like any other fear, you have to crawl out of that hiding place and face it.

I am reminded of the fear every single day. It is a constant thought, always in the back of my mind. With at least 4 finger pricks a day and clear tubing always attached to me, how could it not be? While it is always there, I try to not to let it get me down. However, I’m not always successful in this – I’m only human…(and a worry-wart diabetic).

While having diabetes is enough a reason to justify the fear, since my diagnosis, the fear has intensified by the other health related challenges I’ve had to face: hypothyroidism, high cholesterol (for diabetes standards), and the kicker, celiac disease. All of these, and diabetes, are autoimmune illnesses. When the blood work was initially run to check for celiac, my Dr. mentioned that since I already several autoimmune issues she would check for several others because as she put it, “when there’s one, there’s usually at least another.”

For the last week, I’ve been worried that there may be another one to add to my diabetes resume. With daily symptoms of heartburn, nausea, unexplained highs and lows, feeling full after a just a few bites, and abdominal pain, the fear that something else could be wrong with me has been overwhelming.  In these situations, google can be your best friend or your worst enemy. In one google search of my symptoms, my fears were justified and intensified all at the same time.

My “google diagnosis” is gastroparesis – a condition in which the muscles in your stomach don’t function normally due to damage to the vagus nerve which means that it reduces the ability of the stomach to empty its contents. The most common cause of gastroparesis? You guessed it – diabetes. High blood sugar levels cause chemical changes in nerves and damages the blood vessels that carry oxygen and nutrients to the nerves. Over time, high blood sugars can damage the vagus nerve that leads to stomach muscle failure.

When I was lying in a hospital bed, learning about the complications of diabetes, I wondered how long it would take to develop my first complication. If I have gastroparesis, the answer would be 10 years, 6 months, and so many days, as this would be my first “diabetes caused this” complication. That alone is tough for me to swallow. Add to it the gastroparesis complications and treatment search results, and I am one scroll-down-to-continue-reading away from the worst breakdown I’ve had in years.

I just can’t go there right now- the possibilities and what if’s are just too painful. I’m trying to save the energy on worrying about it until a Dr. actually gives me another challenge to face. It’s hard not to consider what could happen next and I have until my Dr. appointment next Thursday to weigh all the outcomes, to muster up the strength to face whatever happens next. 

With Appreciation and Love

For those who buy sugar free chocolates on Valentine’s Day instead of the real, blood sugar bursting stuff.

For those who ask questions, who are eager to learn more about this disease…even those who asked “Is that a pager”?

For those who are patient through the rollercoaster ride of highs and lows, both physically and emotionally.

For those who hold the same hope in their heart as I do for a cure.

For those who have proven to me that LOVE can get you through anything…

Happy Valentine’s Day. You mean so much to me.

Balancing Act

It’s a quarter till, my shoe laces tied, gym bag packed, ready for Zumba class, and I am wolfing down a Hershey’s candy bar as if it’s my last meal.  No, I’m not trying to give myself an excuse to workout harder – having diabetes is a good enough excuse for that. My blood sugar is a jittery 55 and I feel that at any moment I could drop to the floor if I don’t eat something.

One of the first things I learned about blood sugar was that food made it go up and exercise and insulin made it go down.  I know it sounds simple, but keeping the balance between up and down is tricky and often frustrating. Since I’m about to exercise for over an hour, I know that I need food to get my blood sugar up to a level comfortable enough for me to workout.  In a hurry to get to the gym and to get my blood sugar up, I consume the entire candy bar so fast, I barely even taste it.

There is no other feeling like a hypoglycemic episode. When I went to college and told my roommate that I had diabetes, I told her that sometimes my blood sugar might drop, and that when it did, I might appear to be drunk or just plain out-of-it. Typical low symptoms for me are shakiness, loss of focus and concentration, extreme hunger, and that “I’m going to pass out” feeling. This episode is no different. I feel like every bit of me is trembling, inside and out. My body is telling me to eat something as my mind wanders elsewhere.

Although I have never passed out from a low, (knock on wood), the fear of that happening never goes away. What if I passed out at the gym? How would they know that I’m diabetic? I’d hope that they’d notice my insulin pump. I’d hope that I remembered to wear my medical ID bracelet. How would they know who to contact? I keep my emergency info in my gym bag but what if they couldn’t find my bag in a room amongst everyone else’s? It’s hard to think about all of these what if’s but like everything else in life, all I can do is be prepared.

Before heading to the car, I throw out the Hershey’s wrapper then check to make sure I have candy and my blood sugar meter in my gym bag. My blood sugar has risen to a comfortable 132. My body feels steady again, balanced and ready for my workout and whatever else lies ahead.

The Perfect Fit

This is me, nearly 5 years ago, shopping for a wedding dress. It’s a day I’d always dreamed about – what type of dress I’d pick out, how I’d wear my hair and what length of veil I would choose. As I’m looking through the racks of gowns, sure, I’m thinking about all of these things but in the back of my mind, there is one glaring question: where the hell am I going to hide my insulin pump?! I panic and for a minute feel sorry for myself that I have to deal with this. I want to enjoy my shopping day and this moment I’ve dreamed about so I quickly end the pity party.

I have options here. My first option is to use the garter specifically made for my pump which I bought to wear under my hot pink, (yes, hot pink), senior prom dress. I immediately recollect many trips to the bathroom during prom to hoist the garter back up above my knee so it wouldn’t fall to the dance floor. Ok, scratch that - I plan on dancing my ass off at my wedding (and I did!), not running to the bathroom to fidget with my pump and deal with diabetes.

Another option is to clip it onto my bra. There’s a science to this and the elements all depend on the style of dress, how low the neckline falls, and how well your genetics, (and puberty), panned out for you. Since puberty treated me mediocre and I don’t know what style of dress I’ll ultimately choose, I’m not comfortable with this option either.  I put these worries on hold and head to the dressing room.

Since being on a pump, the dressing room is now not only the place where I see how the clothes fit me but how they fit my pump. There’s a science to this too. If trying on pants, I clip the pump onto my bra while changing in and out. Once buttoned, I do the usual side to side to see how they fit from all angles. If all looks good, the deciding factor is how well my pump fits in the pocket of the pants. No matter how much I loved the pants, I wouldn’t buy or wear anything that didn’t have the right type of pocket to fit, and somewhat hide, my pump comfortably.

Opting to be “unattached”, I try on all of the bridal gowns I picked out without wearing my pump. I’ll worry about where I’ll conceal it after I’ve picked a dress.  Only a few of the dresses are high enough contenders to qualify for trying on a veil but there was only one dress that I wanted to put on again – the very first one I tried on. 

Back in the dress, standing in front of the mirror, I just know that it’s the one. It’s light ivory, with just enough beading throughout its A-line skirt. The neckline is a low sweetheart, too low to hide my insulin pump. But in that moment, I don’t care. I’ll figure out a way to fit diabetes into my wedding day just as I have had to fit into my everyday life.

Here I am on my wedding day, in the dress. You’re looking at one happy, insulin-pumping-diabetic newlywed but you wouldn’t know that at first, or even, second glance. What you don’t see is the evidence, my insulin pump. When all other options failed, I turned to the only thing I knew I would be comfortable with – a pocket.  Sewn into my slip under my dress, this 2”x 4” pocket gave me the freedom to dance my butt off and to enjoy the day I’d always dreamed about.

Is That a Pager?!

An insulin pump is a small, eye-brow-raising, “Is that a pager?!” question-generating, device. First and foremost, no, it’s not a pager. At first glance it looks like one – it’s black, it has a clip, and it’s usually tucked into the pocket of my pants. Once I tell them that it’s an insulin pump and pull out the clear tubing connecting my body to the pump, the person’s face turns from curiosity to confusion and sometimes, even embarrassment – like they’re sorry they even asked.

It’s ok if they ask, I don’t mind answering the questions. I tell them that the pump gives me insulin every hour through the tubing and if I’m comfortable enough, I’ll lift my shirt to show them where the tubing connects to my insertion site, a strange looking “plug” where the insulin goes into my belly and is absorbed by my body. What I really want to tell them is that this “pager” is not only helping me control my blood sugar, it is ultimately keeping me alive.

When the Dr. first recommended I use an insulin pump, I didn’t want to do it. The thought of having something attached me to 24/7 did not sound appealing, only annoying. I had just been diagnosed and I knew the pump would not only be a nuisance, but that it would be visible, only opening the invitation for others to ask questions I wasn’t prepared to answer.

For the first few months, I managed my diabetes with insulin injections, about 5-6 shots a day. While I had nothing physically attached to me, I still had to carry syringes, alcohol pads, and vials of insulin with me everywhere. It was as if I had an invisible string connecting my body to the supplies and emotions I had to carry with me. Other than the extra weight in my purse, the other major downside to insulin injections was the rigid schedule I had to maintain. I had to eat at the same time every day and know exactly how much food I was going to eat at each meal. The freedom of eating whatever and whenever I wanted was gone the minute I was diagnosed.

The only way of gaining some of that freedom back was with an insulin pump, as it would give me insulin automatically, just as a normal person’s pancreas would. Once I realized this and with the persistence of my Dr. and parents, we contacted the pump company and ordered my first pump. When it arrived, I still had mixed emotions – I wasn’t sure if I was ready for it yet. Was I prepared to answer those eye-brow raising questions? Was I ready to open up and talk about my diabetes? I was still so unsure about the pump, that the box sat on the kitchen counter for 4 months until I eventually knew it was the best thing for my health.

Three insulin pumps later, I have not gone back to managing my diabetes with injections.  The freedom that I yearned for was instantly found in that first pump. I was able to eat whenever I wanted and have better control of my blood sugar. Although it took a while, I’ve gotten used to the constant attachment. So much so, that if it wasn’t attached to me, my pocket would feel empty without it. As for the questions and looks, I am now fully prepared for whatever question they ask. I see it as an opportunity to educate someone on diabetes and a chance to share a piece of myself I’m not afraid of hiding anymore.