Monday, March 31, 2008

My diagnosis: Misinformation about diabetes

Finding out that I was diabetic and checking into the emergency room were all very traumatic for me. What made everything worse was that I didn't know very much about diabetes. I thought my life was over.

I remember my mom talking to me in the hospital during my stay there. She was still reluctant to believe that I was truly diabetic. "Well, you're not fat," she said, speaking of the stereotype that all diabetics (with no differentiation between type 1 and type 2) are overweight.

"You're not a kid, so it can't be juvenile diabetes," was the other line of logic.

My sister made it up to see me on my second full day of hospitalization. I remember her lying in the hospital bed with me, holding me while I cried. "Why did this have to happen to me?" I asked, over and over. "Why me?"

The problem was that I really didn't know much about diabetes, and what I did know sounded pretty bad. My biggest source of information was from The Babysitters' Club, a series of preteen books that I read when I was younger. One of the club's members, Stacey, is a type 1 diabetic. In one of the early books in the series, she gets tired of not being able to eat sweets, and starts sneaking some here and there. Then she wakes up in the hospital, having almost died.

With this as my only basis for comparison, I thought I was never going to be able to eat ice cream again.

My other source was Christopher Pike's Remember Me, in which the protagonist's brother almost dies when he is injected with air. I lived in fear of air bubbles — until an educator at my doctor's office finally told me that air in the syringe can't really kill you. (You'd have to inject a large amount of air directly into a major artery in order for it to have an effect.)

There is a lot of inaccurate information in the media about diabetes, and I think that has a lot to do with why people see it in such pessimistic terms. When I tell people I'm diabetic, sometimes they look at me as if I'm already dead. Other people treat it like it's something shameful.

Even the medical industry seems to be confused about diabetes — which brings me back to my medical records and my hospitalization. I'll talk about that in my next post.

My diagnosis: Checking into the hospital

The night after my doctor's exam, my doctor called me up with the news that I was diabetic. In the blood panel the previous day, my blood glucose had registered at 727.

"You need to go to the emergency room right now," the doctor said. She had already called in to let them know I was coming.

The conversation is a blur in my memory. I know I must have handed the phone over to my mom, who seemed angry. I remember her asking the doctor if I could at least eat dinner first.

The doctor grudgingly said that was okay.

I was in the basement, at the computer, when we received the call, but I don't remember how we got upstairs. I do remember sitting at the bar in the kitchen, completely shell-shocked by the diagnosis. I was crying, on the verge of hysteria.

My mom, meanwhile, still seemed pissed. She went to the phone and called an acquiantance of hers, whose husband and two children were both type 1 diabetic. "My daughter has lost a lot of weight and is going to the bathroom a lot. Does that sound like diabetes to you?" she demanded, almost as soon as her friend picked up the phone.

Of course, this was only upsetting me more. I was pretty much wailing at this point, and my dad told her to get off the phone.

We ate dinner and drove over to the hospital. When we walked into the emergency room, I walked up to the folks at the desk and told them, "I'm diabetic and my blood sugar is over 700."

They just looked at me and asked some question about my symptoms or my sugars, which didn't make sense at the time but that probably would now.

"I don't know," I said. "My doctor just told me to come here."

Evidently those were the magic words. Having a doctor call you in at the ER is like having a backstage pass: I bypassed all the miserable-looking people in the waiting room, and was ushered right into my own room. Before I knew it, they'd had me pee in a cup, drawn blood, hooked me up to an IV, and given me my very first dose of insulin.

I did have to wait for a while after that, but I was constantly being monitored and questioned. I was poked and prodded more times than I could count. I had at least a couple of different med students question me about my symptoms. The doctors even ordered X-rays, though I have no clue what they were looking for.

It wasn't until around midnight — perhaps four hours after my arrival — that I finally got a room of my own.


Sunday, March 30, 2008

My diagnosis: Symptoms of diabetes

In my last post, I mentioned a list of various things that were going through my head since finding my old medical records. Looking over the paperwork on my hospitalization, I discovered some things I didn't know or hadn't realized at the time.

Before I start discussing my list, though, I need to tell you about my diagnosis. I'll split it up into a couple of posts, because it's a long story.

I was diagnosed with new onset diabetes in May of 2002, at the age of 22. I had been losing weight all semester, and when I dipped under 100 pounds around time for finals, I decided to go to the doctor once my exams were over. By the time I went to the doctor, I had lost 20 pounds over a five-month period, and my co-workers had begun to suspect anorexia.

I went to the doctor complaining primarily about the weight loss. I didn't think at the time that anything else was wrong with me, but in fact the symptoms had come on so gradually that I didn't realize. It wouldn't have mattered much if I had, though, because I didn't know anything about the symptoms of diabetes.

In hindsight, these are the symptoms I was experiencing, though I wasn't fully aware of all of them at the time:

* Rapid weight loss, even though I was eating more than I used to
* Extreme thirst
* Having to urinate frequently
* Painful muscle cramps, mainly in my legs in the middle of the night (because I was pissing out all the potassium in my system)
* Blurred vision (from sugar buildup in the fluid in my eyes)
* Lack of energy (sleeping 10+ hours a night, napping frequently, etc.)
* Dizziness (disoriented from extremely high blood sugars)
* Really nasty-smelling farts (no idea why this was, really)

We thought that I might have hyperthyroid, which my mother has, because she had experienced rapid weight loss before she was diagnosed. The doctor did a full blood panel, because we really had no clue what was going on.

That was on a Wednesday. Thursday night around dinnertime, the doctor called me at my parents' house.

"The results came back from your blood tests," she said. "You're diabetic."


Finding my old medical records

I found my old medical records in a file drawer at my parents' house. They include the paperwork from my diagnosis and hospitalization in 2002, plus the records from my doctor's visits in those first couple of years.

I discovered/remembered the following things:

1) Some of the things that happened while I was in the hospital. I had never read through the paperwork, so I found this rather enlightening.

2) A glaring misdiagnosis of Hashimoto's disease from my first endocrinologist. (It's been six years and I've had nothing but normal thyroid function.)

3) Evidently my A1c used to run a little lower than it does now. It then shot up in late 2003/early 2004, which is when I switched to the Barbara Davis Center.

4) My blood sugar was much easier to control when I was on Depo-Provera (an injection form of birth control). When I switched to the pill in an effort to better control my cholesterol, I lost some of my tight control.

5) My old endocrinologist used to berate me for attempting to adjust my nightly Lantus dose on my own. Remembering this made me really mad — I hate it when doctors patronize me or treat me as if I'm incompetent!

6) Evidently my LDL cholesterol didn't run as high as I'd thought — the highest I saw before my endocrinologist put me on Lipitor was 138.

7) It doesn't seem like my doctor had a good reason at all to put me on Niaspan (which I got off of several years ago).

Each of these points deserves some attention, so I'm going to address them individually in a series of future posts.

Friday, March 28, 2008

Glucagon emergency kit

Every diabetic should carry one of these in case of hypoglycemia: a glucagon emergency kit. The one pictured is by Lilly:

Lilly glucagon emergency kit

Lilly glucagon emergency kit

They expire periodically, so make sure you get a new prescription when it's needed.

The problem is that there is a lack of adequate education on how to use one. You won't be the one to use it, so it doesn't help much for just you to know how — if it's needed, you'll probably be unconscious, or at the very least incoherent.

In other words, you need to be sure to educate your family and friends — people who may well be nearby if you have a dangerous low blood sugar episode.

But how do you use these things? It's not like you get a practice run, and Lilly's instructions leave much to be desired. So far, the best instructions I've found is this step-by-step slide show for the Novo Nordisk glucagon kit.

What I'd really like to see is a video of how to use one of these. YouTube would be nice, because then I could embed it in my blog, but there doesn't seem to be one of those. I'll keep looking elsewhere, and let you know if I find anything!

Thursday, March 27, 2008

Saying 'No, thank you' to Lipitor

Yesterday I posted about my lab results, which I had just received from my doctor's office. Today I want to explain why I've decided not to go back on Lipitor unless my LDL goes over 120.

Here are the numbers again:

Triglycerides: 128 (should be below 150)
LDL: 112 ("should" be under 100 for a diabetic, though is more like under 130 for a non-diabetic)
HDL: 77 (should be above 40 — the higher the better)
Total: 215 (should be below 200, though this does not take into account high HDL)
Ratio: 2.8 (should be below 4.5)
CHD risk: less than 0.5 (should be 1 or less)

Compare this to the last time I tried getting off the Lipitor, more than two years ago:

Triglycerides: 95
LDL: 138
HDL: 79
Total: 237
Ratio: 3.0

And although I can't find the records to prove this, I'm pretty sure my LDL was around 150 — and my HDL just barely above 40 — when my first endocrinologist put me on Lipitor, back in 2002.

Do you see what I'm getting at? My LDL has gone down and my HDL has gone up, meaning that I'm healthier than I was before. Is an LDL that is only 12 mg/dL too high worth taking Lipitor — and assuming the risk of liver damage that comes with it?

Personally, I don't think so.

Furthermore, I can't help but wonder about the study (or studies) that decided that all diabetics are automatically at a high risk for heart disease. One of the first things I ever learned upon becoming diabetic is that 80 percent of diabetics die of heart attack.

Yet compare that to some other statistics: Ninety percent of all diabetics are type 2, a form of the disease that is usually (though not always) associated with obesity, poor diet, and lack of exercise.

So when they tell me that I'm at a higher risk for a heart attack simply because I'm diabetic, are they talking about normal-weight, type 1 diabetics — or all diabetics in general? And when the researchers analyzed the data regarding diabetics and heart attack in order to make that generalization, did they control for type of diabetes, weight, diet, and lifestyle?

I'm 5'4" and weigh 123 pounds. I eat an organic, low fat, primarily vegetarian diet. I'm reasonably active. My blood sugar is under good control (my A1c hasn't risen above 7.5 in more than three years, and has lately averaged in the high 6s).

I just don't think I'm in that great danger of heart disease at this point in my life, which is why I've decided to stay off Lipitor as long as my cholesterol stays under 120.

Wednesday, March 26, 2008

My lab results

I just got my lab results back from my last visit to the Barbara Davis Center.

I knew ahead of time what some of the results would be. My doctor called me several days after my visit, sounding concerned: My cholesterol had shot up since my last lab.

I knew this was going to be the case, but I forgot to warn them. I stopped taking Lipitor about 9 months ago, because Michael and I were talking about trying to get pregnant soon after our wedding. Then we kept pushing it back a couple of months at a time, so I never started back up again.

However, I had read somewhere that drinking 8 oz. of grapefruit juice a day has been proven to lower LDL. (This is probably why you are not supposed to have grapefruit while on Lipitor — they don't want it to go too low.) So a glass of grapefruit juice is now a part of my morning routine.

In addition, I think I'm eating much better than I was all the other times I've been tested while off Lipitor. I'm also more active than I used to be: My husband and I walk almost daily, and I spent a lot of time riding and working with my horse.

Although the results rather startled my doctor, I think you can see the effects of my diet and lifestyle changes:

Triglycerides: 128 (range 0-149)
LDL: 112 (range 0-99)
HDL: 77 (range 40-59 — on this one, the higher the better)
Total: 215 (range 100-199)
Ratio: 2.8 (range 0.0-4.4)
CHD risk: less than 0.5 (range 0.0-1.0)

This is up from a LDL of 60 or 70 when I'm taking Lipitor.

I'm actually pretty pleased: Even though my LDL is still above what it should be, it's not by much. In fact, this is officially the first time I've been able to bring my cholesterol down via any method other than drugs. Now that is something to celebrate!

Halle Berry, diabetes, and pregnancy

When I was searching for Halle Berry's quote about diabetes being a gift, I found a lot of celeb gossip that I hadn't been aware of previously: Apparently, she created quite a stir last fall by claiming that she had been cured of type 1 diabetes.

Of course, all of us with type 1 diabetes know that there isn't a cure — yet. Type 1 diabetes is caused when the insulin-producing cells in the pancreas die, which is a permanent problem. Usually this is caused by an auto immune response, where the body's immune system — for whatever reason — decides to attack the pancreas. However, I have also known of people who are technically type 1 diabetics, in that their bodies can't produce their own insulin, but who became that way via other means (i.e. alcoholism, exposure to chemicals used during the Vietnam War, etc.).

A possible cure for type 1 diabetes that is being explored right now is islet cell transplants. The problem with this is that until researchers find a way to stop the auto immune response, the body simply kills the new cells, requiring the procedure to be repeated periodically.

I don't think that Halle Berry's "cure" is from islet cell transplants, as some people have suggested. Rather, I think that it has to do with her pregnancy. I've heard from type 1 diabetic mothers that their insulin needs drop off significantly, and sometimes entirely, while they are pregnant. My old nutritionist, who specialized in working with diabetics, said the same thing.

I'm surprised that the "experts" used for this ABC News article didn't think of this possibility, but I guess this just goes to show how much confusion there still is regarding diabetes.

Berry's baby was born on March 16th. It is my guess that the happy mother will soon find (if she hasn't already) that her blood sugars are rising, despite the diet that "cured" her during her pregnancy. Whether she will publicize her mistake — now that's another matter entirely.

Tuesday, March 25, 2008

Halle Berry on diabetes

Halle Berry was a tremendous influence on my decision to be proud of being diabetic.

Back in 2004, I received a newsletter from my doctor's office, the Barbara Davis Center, about their annual Carousel of Hope — a fundraiser dinner for diabetes research. At this particular event, Halle Berry received the Brass Ring Award for "her extradordinary contributions to the cause of curing childhood diabetes."

According to the article, Berry "told the audience how she now feels as though having diabetes in her life is a gift, a gift that has given her strength, taught her compassion and given her grace, every day of her life."

Knowing that someone could be proud of being diabetic had a major impact on my life. I realized that I no longer felt regret or shame regarding my diagnosis — that I was, in fact, rather proud of being diabetic, even though I hadn't known until then how to describe the feeling.

Learning to be proud of being diabetic was one of the best things that ever happened to me. I wholeheartedly believe that in order to keep your diabetes under good control, you have to be able to embrace it as a fundamental part of who you are.

Saturday, March 22, 2008

Diabetic and proud

I am a type 1 diabetic.

And I'm proud of it.

There are a lot of inaccurate portrayals of diabetes in the media, and there's a lot in our society to make us feel ashamed of being diabetic. I've been discriminated against by employers and coworkers, treated as an invalid by family and friends, and systematically denied coverage by health and life insurance companies.

Despite all of this, I am proud of who I am — and being diabetic is part of that. I hope this blog will help other diabetics to embrace their conditions, take ownership of them, and exercise the right to live just as full a life as anyone else.