Battles with Insulin

I am ready to give my shot. I sit with the needle poised against my skin for at least 10 seconds. And slowly, ever-so-slowly, push the tip into my abdomen. The needle sinks like a toothpick into a warm cake.

Now comes the hard part.

I deploy the plunger, sending 6 units of beef/pork insulin through my skin and layers of tissue. And the burning begins. Burning like someone is holding a match to the site of the injection. As I pull the needle out, a dark red bubble appears and an itchy, bumpy rash forms around the bubble. It has been happening every time I give a shot for the past week, every single time.

My mother makes a note to mention the reaction I'm having to the endo that next time we go. That's nearly a month away and I'm not sure I can make it that long with burning bumpy bubbling rashes cropping up on my skin four times a day. My mother tries a number of remedies, hoping to alleviate my discomfort; calamine lotion, hydrocortisone cream, bacitracin ointment, cool tea bags (at the suggestion of my hippie Aunt Kay). Nothing works. In fact, the rashes seem to be getting worse, lasting longer and becoming more painful.

My appointment with the endo is moved up. We demonstrate the phenomenon for him. He pronounces, matter-of-factly, that I'm allergic to insulin.

"Allergic to Insulin?" My mother and I both ask the question out loud.

But I've had diabetes for two years, how can I all of a sudden be allergic to insulin? What does this mean? -- You can't take something you're allergic to -- especially when your reactions seem to be getting worse.

But I had developed an allergy to insulin; I was allergic to the medication that was keeping me alive. My doctor explained that although it was rare, insulin allergies happened now and again. He suggested we start two new bottles of insulin and document any reaction I might have. He told us to call back after two days.

Home I went for more burning and itching and bumps.

We went back to his office three days after that initial visit to meet with him and an allergist. The allergist explained that it was necessary to perform skin tests to determine what types of insulin caused a reaction and which reactions were least severe. From there, I would undergo something called "desensitizaion." Although no one took the time to explain the procedure to me, its name spoke two words in my ear... "No fun."

The skin tests were itchy and painful. My arms looked like they would have if I'd done the crawl stroke through a field of poison ivy. It was determined that I am least sensitive to the beef/pork insulin combination I'm currently taking.

The desensitization process was as unpleasant as it sounded to me that day the doctor mentioned it to me and my mom. Three days on a diabetes care unit with a micro-dose of insulin every half hour, the dose increasing in small increments with each injection. Blood draws every hour to prevent any onset of DKA or hypoglycemia that might result from the change in my regimen. I fought a little at the start; then realized these micro-doses didn't sting or itch -- and, if this worked, then maybe the burning and rashes would stop altogether. I trudged through like a brave little soldier -- feeling a bit like an overused pin-the-tail-on-the-donkey game by the end of my four day hospital stay.

But my shots were more tolerable after that. And when human insulin was mass-marketed several years later, and I endured another desensitization process, the skin irriations nearly disappeared.

Here's the thing though, over the past few months, I've been developing reactions again. Some days my pump sites have been leaving huge bumps and I can't go more than a few hours without severe itching and burning at the site of the cannula, particularly if I'm giving a larger bolus dose. Plus, I don't exactly have a "rash," but my skin is a bit bumpy and pink around the areas where infusion sites have made their home.

When I called my current endo, he said he's never heard of an allergy to Humalog or Novolog Insulin. He suggested a few things to try with the infusion sites -- a different antiseptic solution, an adhesive remover, a cream that is supposed to reduce skin irritation associated with infusion sites... But -- I know what I'm feeling. I know what an allergic skin reaction feels like. And I'm pretty sure that's what's going on here.

So -- should I see an allergist? Should I go back to my endo and ask him to have another look at my diabetes history, particularly my experience with insulin allergy? Should I see an allergist and have him talk with the endo? At this point, I'm leaning toward the third option -- I think that sometimes, a doctor needs to speak with another doctor... Anyone else have opinions? Am I being paranoid/hypocondriacal here? Has anyone experienced insulin allergy -- in particular an allergy to Humalog or Novolog?

Precursor

This is a precursor to a post that I'm in the process of composing.

Since I'm a queen dork, I keep up with words. I love them. I'm interested in the dictionary and I'm thrilled when the New Oxford American and Merriam Webster release their "new word" lists each year. Among the words added to the New Oxford American Dictionary in June of 2005 was the following: "diabulemia" - "the manipulation by diabetic patients of insulin treatments in order to lose weight."

Information about diabulemia is scarce. A Google search on the term brings up these:

Check at the very bottom of this article.

A slightly more in-depth look here.

It's easier for me to present you with the facts before I present you with my own story of hitting rock bottom and dealing with my bulemia and diabulemia.

When I was manipulating and skipping insulin doses to attain weight loss goals, there was no name for what I was doing. From just after my diagnosis in the early 1980s until two or three years ago when a new focus on eating disorders gave birth to a name for this dangerous practice, I knew girls and women who, like me, thought appearance was more important than health; thought that a slimmer figure was worth risking their lives. I am lucky; I was able to stop and I have not yet suffered complication consequences as a result of my dicey behaviors.

Is there a greater awareness of diabulemia now? Have any in the OC heard of the illness -- and did you know there was a clinical term for it? Do you think that the instensifying focus on poor control and resulting complications has reduced or has the potential to reduce incidence of the disorder?

Miracles

It happened in summer. It was one of those hot days. You know -- the kind of hot days that make diabetes a real suckfest. It was the kind of day when you feel as if your body's pores are leaking sugar along with your sweat. I had to drive into Boston to give a lecture at Emerson College about Direct Marketing for non-profits. Leaving Providence, I was a little nervous -- but excited.

I cruised up 95 and onto 93... And I felt OK...

And then I got onto Storrow Drive and I started realizing how confused I was. It seemed as if the people around me on their daily commute were driving like idiots and the signs and landmarks I was looking for -- well, they just didn't seem to be there at all. I thought -- it's just your nerves -- just find your exit -- and find a parking space. You don't want to be late.

I got off Storrow, and by some miracle, I got off at the right place. But I could not find a parking space. If you have ever been to downtown Boston -- near the Commonwealth exit -- you can testify to the fact that even when your bloodsugar is perfectly fine, it is damned confusing. There are lots of strange alleyways and weird one way streets. Now, add a low bloodsugar. Now, add the fact that the person having the low bloodsugar is having a "stubborn moment" and has not yet tested... You've now got a person driving their car the wrong way down alleyways and one way streets and asking silly questions of passersby who think they're completely nuts.... And, oh, by the way, the person driving the car happens to encounter a Boston cop as they're exiting the wrong way down one of those one-way streets... Thankfully -- or maybe regretfully -- the Boston cop doesn't feel like enforcing the law that day.

Finally, I realize I am probably not going to make it to this lecture. Because, finally, I test my bloodsugar and have a reading of 26 mg/dl. Yikes. That's what I thought to myself. Yikes. I have nothing fast enough to treat this kind of bloodsugar in my car (read: a juice box and three glucose tabs are NOT going to do it.) I suck down the juice box and drive out to the nearest "main" street -- which, by another miracle, was Massachusetts Avenue. I see a sign for Trader Joe's in a row of houses to my left and I pull over into a T Bus stop space. I cross Mass Avenue, stumbling like a fool. I take an escalator DOWN to Trader Joe's. I marvel at how strange it is that there is a Trader Joe's in the basement of the people whose apartments are upstairs. I marvel at what I think is an absurd selection of food. I leave Trader Joe's -- nearly 20 minutes later -- with a quart bottle of 2% milk, a bag of Trader Reduced Fat Crunchy Cheese Curls, and a 4 oz bag of Jelly Beans (the last of that particular item in the store.) I find that my car is still outside -- parked totally illegally -- and that there are a number of people marveling at me as I get in it. It seems that the people standing around staring are also speaking a million foreign languages. The World is hazy and feels so far away.

I start driving -- and guzzling the milk -- and finishing the jelly beans and eating the cheese curls. I am covered in cheese curl orange cheese and I end up spilling most of the milk down the front of my shirt. I make it down Mass Avenue and somehow I found Route 93. I end up, by accident, driving to the airport. No, I am not kidding. I am at the airport, once again, parked illegally. I test again. I am only up to 39 mg/dl. I am scared. I have given no insulin in hours. I have shut my pump off. I am eating like a mad woman. All I have left in my store of weird food is a few sips of milk and some cheese curls... And my bloodsugar is NOT coming up fast enough.

So... what do I do? I drive out of the airport and get onto 93 -- then realize I'm going North and I want to be going South. I just want to GET HOME. I see an exit with a sign for gas on it and think -- gas, that means they have to have a food mart too, right? I am now frantic. My gas light is on -- both my car gas light and my body gas light -- the body gas light is tellling me "get more food now..." I find the gas station and the attendant food mart. Before I get out of the car -- I test again. 36 mg/dl -- what in god's name is happening to me?

I head into the store -- more stumbling than walking. I still have enough presence of mind to think, "I must look like crap." I run/stumble/walk to the back of the store and grab three 12 ounce bottles of apple juice. I also grab three 12 ounce bottles of fruit punch. I am going to force my bloodsugar up -- or, I think, with a little laugh to myself -- it may be the last thing I do... I mumble something about gas and bloodsugar and things to the puzzled clerk.

Sitting in my car in front of the gas pump -- after I've simultaneously pumped my gas and guzzled two 12 ounce bottle of apple juice, I am finally starting to feel halfway human again. I drink another bottle of apple juice. You can imagine how bloated and disgusting and strange I am. I give myself thirty minutes in front of that pump. The clerk is staring out at me. I can't even imagine what's going through his head. I test again. 92 mg/dl. Thank you, thank you. I'm crying like a child.

I head back to 93 -- get on -- headed South this time. And get myself going home. When I do finally reach my destination I am still weepy and when I'm inside -- I tell my convoluted tale to my boyfriend who listens patiently and frets with me about what could have happened, and why didn't I call (no cellphone and not one working payphone -- or so it seemed -- in the entire city of Boston), and why did I drive in that state (I still don't know), and why did it take my sugar so long to creep up (as yet unexplained -- even after I consulted my endo about it), and why and why and why? -- I test one more time 149 mg/dl before falling into a near-comatose sleep...

And I wake up the next morning -- by yet another miracle. And the sun is hot and melty in a new summer sky. And I am looking back on the day before and I am curious as to how in hell I am alive...

I beep in at a cruising sugar of 96 for the start of another day... Wondering how many more miracles I have and how many more I might need.

Further Commentary

Although I know that there is not much need for further commentary about the "Two Roads" discussion from Diabetes Talkfest , I thought I would post the following, because I believe it is relevant to the discussion.

I was reading People Magazine this week, and there was an article about Nate Berkus, an interior designer who survived the Tsunami that hit Indonesia/Thailand/Sri Lanka/India last year. He lost his long-time partner in the disaster and has spent the last year making an amazing physical and emotional recovery.

Toward the end of the article -- told in his own words -- he writes,

"These are my gifts, the gifts that I have paid a price for. While I would never have chosen to pay that price, these now are the gifts I could not live without."

The entire article is inspiring, but this quote sums up much of how I feel about my life with diabetes. There isn't much I could add to it... I just felt like sharing it.