Monday, October 26, 2009

An Act Of Bravery: My Letter to the Editor

In response to the horrific letter that Kelly pointed out on her blog, I sent in the following:

I remember the day so clearly. It was just a few months after I was diagnosed with type 1 diabetes at the age of 12, and my mother took myself and my big brother out to eat in a restaurant. Just as the meal arrived, I pulled out my insulin vial and my syringe, and drew up the appropriate dose. I injected myself, and noticed that my big, strong, and cool brother was watching me with amazement. I inquired what the amazed look was all about, and so he answered.

"Just like that? You injected yourself and that's it? If it were me doing it, I would be squealing! You are so brave!"

At that moment, a warm feeling flooded my being. There I was, just a few weeks into my new life of fingersticks and injections, yet I felt so good. Yes, good. Good because my big brother, whom I always looked up to for his bravery, courage and strength, was admiring ME for MY bravery, courage, and strength. In the ensuing nine years,
when I went through the ups and downs of my diabetes, when I struggled with high numbers and low ones, I looked back at the scene in the restaurant, at the time when my big brother called ME brave.

And I know I am brave. You can therefore understand the terrible feeling I had when I read the letter by Mr. Wallace Barber. People don't view my actions as brave? People don't think the responsibility I take for myself, my health and my life are courageous acts? Can it be that people really view my diabetes as something disgusting, something they should be traumatized by? Shouldn't people be awed by my bravery (as was my big brother) and thankful that they don't have to go through all of this.

And so, I say to the public. You don't want to hurt us diabetic anymore, do you? Please, for my sake and the sake of the thousands of type one diabetics you will encounter in your lifetime, GET EDUCATED!

Thank you,

A BRAVE person with type one diabetes

Sunday, October 25, 2009

Great Moments in Diabetes Lunacy

I was a little horrified when I looked at the front page of this blog recently. I am a really happy and upbeat peron, but judging by just the titles of the last few blog posts (forget the actual content...) one would never know it. And so, here is an opportunity to laugh at the complete stupidity that is me controlling my diabetes.

First, let's set the stage.
I chked my blood sugar (high), ate some lunch (high in carbs) and then took a retroactive bolus for the two things combined. It was a big bolus.
A minute later, my father reminded me that shabbos was at 5:45. (Orthodox Jews such as myself don't take showers or do other forms of work from sundown on Friday until nightfall on Saturday.) I looked at the clock and almost screeched. It was 5:28. I needed to take a shower and get ready before shabbos started. I couldn't believe how I had let myself lose track of time.
I ran faster than a top athlete to grab a towel and jumped into the shower.

was in the middle of pouring shampoo onto my hand when I suddenly heard a noise. It was the kind of noise that would make one think that they had dropped the shampoo, but I was still holding it. Then I realized that the thud I heard was my heart dropping all the way to the cold and slippery floor of the shower.

Blasted minimed and their slow bolus!

Then, I couldn't help it. I burst out laughing. Laughing at myself. Laughing at the idiocy of the situation. Laughing at the way I had lost track of time, then lost track of my entire brain in te process.

Don't get it yet? The entire amount of elapsed time from the moment I pressed the final "act" on the pump until the moment that I had jumped into the shower was not enough for a sizable bolus such as the one I had taken to be delivered. And I had no idea how much was delivered before I hastily disconnected and jumped in.

Here I was, proud of myself that I remembered to bolus and then....

I hurried the rest of my shower, in part because I had about 13 minutes left before the start of shabbos, and in part because I was hoping that a miracle would happen and I would see that I had mistaken the timing and I delivered the bolus an hour ago and simply lost track of that hour.

There was no mistaking the signs. I got out of the shower, and immediately saw my pump, sitting on the counter next to the sink. I followed the tubing with my eyes and there the end of it a pile of liquid. I won't tell you if that liquid was diet coke or insulin. You figure it out yourself, ok?

Then, I did what my instinct told me to do, which was to pick up my pump and stare at it for a clue. I grabbed it, looked over at the screen, half expecting it to say: "1.3 units were delivered before you lost your mind" or maybe "you idiot, what do you expect from me, I'm just a machine! I can't be held acountable for your idiocy!" But no, a glance down at my screen showed...

No, it wasn't empty. I wish. The darn thing was still delivering insulin. I reconnected so fast, but still it was just in time for that little buzz, telling me that it was done with the bolus. About time, huh?

And then (just to toot my own horn and make up for the display of lunacy that I have just provided) I exhibited more self control than I had, and I didn't risk a horrid low by re-doing the whole bolus. I waited, and an hour and a half later, I corrected a 200.

Ok, go ahead and laugh now.

Tuesday, September 22, 2009

The Darker Side of Diabetes

I know that Invisible Illness Awareness Week is over, so this post isn't my attempt at awareness, more of an attempt to get things off my chest. In fact, I doubt I would ever try to raise awareness for type 1 diabetes's misery, because I like people to think it is easy, and treat me like they would any healthy friend. And really, it basically is easy.

But sometimes it's not.

Some days, like today, I want to scream. I want to tear my hair out. I want to crawl under the blanket and not come out until someone finds a cure. I just want life to be normal again. Right now, I am not even asking for normal as other's see it. I just want normalcy for type 1 diabetes.

For the last couple of weeks my blood sugars have been something out of a horror movie. First, a couple of days (weeks? who even knows at this point?) my blood sugars wouldn't go below 300 for anything in the world. Now, they have developed a new trick: they go down, then all the way back up, so fast it's dizzying. I don't think a person who never experiened it can ever understand what it feels like to go from 400 down to 150 and back up to 450, all in the space of an hour and a half.

And I don't think that a person who has never felt it on their own can ever eally believe me when I say that I am not myself. I guess this really is all about invisible illnesses, because I feel totally lousy, yet I get up, I go to work, I do whatever I normally do. How an I explain that the effort required to get this all done when I feel so lousy is almost too much for me to handle? How can I ever portray the feeling of being up half the night from crazy high blood sugar, then getting up to go to work, and pretending that I am fine? How can anyone understand that these grouchy complaints that come out of my mouth are simply not me? How can anyone understand how rough this is for me lately?

How can anyone understand the confusion of taking insulin, eating nothing, and finding your blood sugar rise? How can anyone ever comprehend the fear, when I wonder what is going on with my body and when I will be back to normal? How can I ever explain to my friends that I haven't been calling them back because my head is spinning and I feel like I can't carry on a normal conversation? How are my friends supposed to believe me when I barely believe it myself?

Friday, September 11, 2009

Dying Of Diabetes In A Civilized Country?

Someone gave him my phone number, thinking that perhaps I could help with some supplies he needed. This man knows very few people with diabetes, and takes advantage of his listening ear.

He starts to tell his story, and I sit there, completely spell bound. I don't believe it's happening. I don't believe it's true.

He introduces himself, then mentions he has "a severe case of diabetes." I groaned to myself. People with type 2 diabetes have a nasty habit if aggravating those of us with type one. I figured this man was simply a type two diabetic who now needs insulin, and now thinks he has a "severe case."

Turns out I was right, but it was me who was about to learn a big lesson.

The man, we'll call him Mr. Lerner, began by telling me that he used to have "regular type two." He used to check his blood sugar a couple of times a week, take a daily pill, and watch his food intake. "I cheated occasionally, but I was basically under very good controlled."

It sounded pretty run of the mill to me, so I continued to listen. "Everything changed when I got a terrible infection. I had a fever, and I was pretty sick." I listened in amazement as he told me what happened in the aftermath of that infection. It was shabbos (sabbath) afternoon and his blood sugar, at last test, was a bit under 200. Not a very big deal, right? Well suddenly, he collapsed. Blacked out. An ambulance ride to the hospital later, and his blood sugar was close to a thousand. They gave him a massive dose of insulin, sent him home, and figured the whole thing was over.

A couple of days later, when he was back at the hospital, having collapsed once again, and they realized something was wrong. They further realized that something was very wrong when the man didn't respond to their prescribed insulin regimen. They continued to increase his insulin doses, and his blood sugars continued to climb.

At first, I was sure he was eating terribly. I inquired about his diet, and received another shock. "Well I eat very low carb, and I am extremely careful with every bite that goes in my mouth, but it's more than that." He explained that his blood sugar would climb with no food whatsoever.

The story only got worse as I began to hear all of the awful details. Details like taking hundreds of units of insulin per hour, just to stay under 200. Details like a person being on an insulin pump but changing the reservoir multiple times per day. Details like an A1c of >14%. Details like a man remaining in the 400-500's through most days.

"I don't feel like there is much of a need to check, because almost every time I do, the meter just says HI." He started detailing his history of hospital stays, treatments, and doctors. "Most doctors refuse to treat me after a while. They simply have nothing to help me with."

I listened to his tales in shock. Here is a man, living in the year 2009, in the advanced country of the United States of America, and he is dying of diabetes. Medical science has advanced to such a state, that diabetes treatment is more advanced than people would have ever dreamed of. There is a plethora of choices available to patients with diabetes, in terms of insulins, meters, pumps, and even things that patients of fifty years ago wouldn't have been able to dream of, such as continuous glucose monitors.

Yet, as we take insulin, then watch our numbers descend, we don't think properly about the marvels of it. Sure we can do a little introspection occasionally, and remember the times when insulin hadn't yet been discovered, when diabetes was an instant death sentence, but do I ever stop and think about the amazing wonders of insulin simply working?

And when I take a shot, or I bolus on my pump, and I get frustrated because my blood sugar only went down a bit, do I stop and appreciate the little bit that it did go down? All those times that my blood sugar gets a little high, and I feel so sick, so I stop and think how grateful I have to be that I don't feel like this all the time? All those shots I take, every pill I swallow, every blood test I endure, I might think briefly about the wonders of modern medicine, but not about the wonders of the human body, the wonders of modern medicine and the unbelievable wonders of the human body interacting the way they should. And that is a mistake. Nothing should ever be taken for granted. Nothing.

Not medicine that works. Not food that fills you up. Not clothes that keep you warm. Happiness, health, family, friendship...these are all things that we overlook, things that we take for granted. But nothing is for sure. Nothing is guaranteed. It's amazing how much everyone has to be grateful for.

Monday, July 20, 2009

Diabetes...On a Serious Note

By nature, I am an extremely happy person. While I do have my days where is seems everything is going wrong, I always try to stay upbeat and focus on the good. I don't want this to come out sounding like a depressed post, or like I am miserable because I have diabetes, but I was just thinking about it...

Recently, my company switched insurance companies. The employees received a number of options of which company they want to go with. There was one choice, which was free, another choice, slightly better, which required a small employee contribution, and a third choice, which required a slightly larger sum. I looked at all my coworkers, as they made their simple decisions, and I felt a slight stab of envy.

Sure I know that there is more than meets the eye. In fact, none of my coworkers knew the reason for my long hesitation before making my choice in insurance plans. They don't know that as a person with type 1 diabetes, insurance, medication, doctor's visits and co payments become very real, everyday things. They don't know that as a person who deals with diabetes, I am tied to my job, as they provide me with health care benefits. They don't know that I am living with diabetes, much less, what it entails.

But I am living with diabetes. And I do know what it entails. Each day, as I wake up, my first thought is not "What will I wear today?" or "Gosh I hope my boss got over that silly mistake I made yesterday." It's not even "Man! I overslept!" Rather, it's "hey! Where's my blood sugar meter?" And each afternoon, as I prepare to eat lunch, it's not simply a matter of warming up my pre-packed lunch, or unwrapping my sand which, it's a matter of checking my blood sugar, counting my carbs, and taking the appropriate dose of insulin. Each evening, as I am ready to fall into the blissful state of oblivion, commonly known as sleep, once again, I have to take out my blood sugar meter and check.

And all that is assuming things go right. Unfortunately, they don't. Often times, things go wrong. Horribly wrong. Somehow, vacations throw my schedule off, and I go low...every time I vacation. Perhaps it's the reduced stress level, perhaps it's the increased activity, perhaps it's simply a matter of a break in routine. Either way, it's ironic that the last three vacations I went on left me fumbling around a dark hotel room, in the dead of the night, praying for all I was worth that none of my roommates would wake up, finding me eating at four in the morning.

In an interview, a celebrity with diabetes stated that diabetes takes the joy out of things. I disagree. Having a low blood sugar while trying to photograph Niagara Falls doesn't take the joy out of the experience. It simply makes the joy harder to find. And while running to the bathroom constantly because of a high blood sugar doesn't take the joy out of having a friend over for a visit, it does make that joy more difficult to find.

And through it all, I struggle to remain grounded, to remind myself that my pancreas doesn't work, but everything else does. Sometimes it's easy to find the good, but days when diabetes takes center stage, it's harder to remember that the joy never goes away. But I look at my friends, who take so many things for granted, and I am thankful for the experiences I have as a result of diabetes. I am thankful that I have learned that my body is something to be grateful for. I am thankful that I have learned to appreciate the joy...all the more so because it's sometimes harder to find.

Monday, June 1, 2009

Sick Days

By Dr. Seuss

I don't like this,
I don't like it one bit,
I don't like it,
When I'm sicker than sick.

I don't like it
When my number is high.
I don't like it
When my tongue feels all dry.

I don't like it
When I am sick.
I don't like it
When I feel ick.

I don't like it
With cotton in my head.
I don't like it
When I'm stuck in bed.

I don't like it.
I don't like it one bit.
I don't like it
When I'm sicker than sick.

I don't like
Dryness on my tongue.
I don't like
Feeling strung.

I don't like
When my meter waves.
I don't like
The sugar craves.

I don't like the ketone strips.
I don't like the IV drips.
I don't like the bathroom trips.

I don't like this illness
I don't like it one bit.
No I don't like it
When I'm sicker than sick.

Thursday, May 21, 2009

What's For Breakfast?

To say I am not a morning person is a gross-underestimation. I am the grouch who, in answer to a "good morning" will answer "says who?" And I am the grouch who will glare at my roomamtes and mutter something like "cereal? At 8 o'clock in the morning?? How could you?"
In short, I can't look at food for the first couple of hours after I wake up-on a good day. So I knew something was really fishy this morning. I had gone to sleep later than normal. When I say normal, I mean normal for me, which is anyway later than normal for most people. Basically, I had probably gone to sleep after my father already woke up. When that happens, breakfast is generally delayed even more, because I most likely had a snack that would at best be called a midnight snack.
Now, when I wake up, it is usually with a startled thought, which jerks me awake. Sometimes it's a "oh man it's so late! I can't believe I overslept like this!" Sometimes it a "Hey! Where is my phone? I thought I left it right here next to my pillow!" But never, ever, did I have such a thought before. I woke up, and the first thought that jumped into my extremely overtired brain was "hey, what's for breakfast?"
Woah. What's for breakfast? Me? I am the one who gets nauseous when I see food before 11am. I am hungry for breakfast at 7:43 am? Something must be wrong.
Ding-dong. You got it. Something was wrong. A quick BG check...56.
I had my breakfast early today.