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The Verdict in my Eyes.

I’d like for everything I post to be uplifting and inspiring … to fill other diabetics and parents of diabetic children with some semblance of hope. To come across these vignettes and find solace therein.

But sometimes I am scared.

I can’t think of any other way to say it – I’m nervous tonight.

It will have been nineteen years for me as a diabetic this coming September. I don’t remember a life without it. Every memory in my life is marked with these streaks of hypoglycemia and the quick sting of a needle. I do my best to be a “good diabetic” and keep my head about myself, but I know I haven’t been perfect. I haven’t even tried, sometimes. And I can’t help but wonder when it will start to show.

I’ve had A1c’s in the 11’s, for months. I’ve had bloodsugar readings of 23 mg/dl. Or 535 mg/dl. I’ve had emotional lows and highs along the same range. I’ve experienced large ketones as recently as last month. I’ve drank the better part of a bottle of juice in the middle of the night as my bloodsugar violently crashed, only to collapse on the kitchen floor from the effort. I can’t keep a bloodsugar journal to save my life. I’ve gone to work out when I should have stayed home and rested. I’ve stayed home when my body craved the exercise. I’ve avoided testing my bloodsugar for fear of the result. I’ve not answered the phone because I felt I deserved to be alone. I’ve felt lost. And afraid. And alone.

“Would it not be better to mark the interval together, looking at what is really here, seeing others, telling the truth about our bodies, neither so perfect as we might hope nor so horrible as we dread?” – Lisa Roney, Sweet Invisible Body

I can admit to my mistakes. I can’t pretend to have been the perfect diabetic girl. And I am grateful for having this forum to confess.

But I haven’t been all wrong. I’ve also brought my A1c down to 6.5%. I have tested upwards of fifteen times a day for the last two years. I have taken on an aggressive workout regimen. I have constructed a careful insulin to carbohydrate ratio that works 90% of the time. I have fallen in love again without giving thought to diabetes. I have explained this disease with confidence and strength to complete strangers. I have let people tell me, “I would have never known if you hadn’t told me.” I have, perhaps, given hope to some. And reassurance to others that, even though we try to be “perfect,” there is comfort and support found in sharing the same mistakes.

Sharing, in effort to avoid repeating.

Tomorrow afternoon I have my biannual eye exam. The doctor will give me a standard eye exam and then she will dilate my eyes to look for hemorrhages and detachments. Every year, for the better part of the 45 minute exam, I hold my breath. My eyes stare luminously at the circle on the wall as she shines the light in my eye, searching for my failure. Every year I wait for her sharp intake of breath.

“Kerri, I’ve detected some problems in your eyes…”

I haven’t heard anything from any doctor saying that the complications have manifested from words on a page to a breakdown in my body. I haven’t felt responsible for any of this yet.

Eye exam tomorrow. And my appointment at Joslin in two weeks.

I sit with a pearl of fear in my mouth.

But it may just be small enough to swallow.

Minimed Paradigm 512, aka Charlene.

Another republished blog from Ye Old Blog:

So if you check out this link it will take you to the Medtronic Minimed website. I currently wear one of their pumps – the Paradigm 512. In “smoke,” thank you very much. It goes with everything…

I was diagnosed, as stated in my previous entry Becoming Diabetic , in September of 1986. Speaking only in terms of insulin, I was on one injection a day, a combination of Regular and NPH. The sound of my mother’s rings against the bottle of NPH as she rolled it against her hands to mix the insulin epitomizes my childhood as a diabetic. Throughout the course of the 18 years I have been diabetic, I have been on a range of injections regimines and insulin combinations. I’ve taken Regular, NPH, Lente, UltraLente, Lantus, and Humalog. I started with one injection per day and ended up taking 9 – 12 per day by the time I was 24. It wasn’t that I needed to take an inordinate amount of insulin, but more that I needed to space a very small amount over a long period of time. It was very frustrating to take an injection of only two units, just to have a repeat performance in three hours.

Switching to the pump was the only logical step. Go from twelve injections a day to changing an infusion set every three days? Yes, please. I had also reached a plateau with my bloodsugar regimine, working twice as hard to remain in range but not seeing results. I decided overnight to go on the pump.

At first I was scared to death. I wrote frantically in my journal, playing out every frightening scenario…

From a Journal Entry dated: December 3, 2003

“I am afraid of how this thing will look. If I’ll become tangled while I sleep. If Abby or Naeco (my cats) will try and nibble through the cord. If sex will be weird. If I’ll become very self conscious, or if I’ll flaunt my progression proudly. If it really will improve my A1c. If I am emotionally strong enough to do this. If I will be completely and utterly grossed out by the mechanism itself. Will it hurt to put the infusion set in? Will this be a mistake? “Everyone” who goes on a pump seems pleased with the results, which is reassuring but I hope not embellished. I don’t want to die from complications. It’s been seventeen long years and I am “fine”, but I’m afraid to be “not fine.” I like seeing. And walking. And being healthy in general. I hope that all of my previous screwing around hasn’t made this leap in vain.

I do want to do what’s best for me.

I seriously hope I’m not too late.”

The pump was delivered, via FedEx, on a Saturday. I tore into the box like it was Christmas morning. But once I saw the contents, I stopped abruptly. It was so small. But was I ready to wear it forever? Was I ready to have an external symptom of diabetes?

In order to be able to wear this thing comfortably every day, I needed to name it. My friend and I were discussing the possibilities. He asked me what I was going to name the pump.

“Mr. Pump, I guess.”

He grinned, and I immediately remembered The Simpsons episode, where Bart plays in a minature golf tournament and Homer makes him name his putter. Their dialogue played out as follows:

“Son, you have to name your putter.”
“Mr. Putter.”
“NO!! You have to give it a girl’s name!”
“Mom.”
“NO! Your putter’s name is Charlene.”

So the pump’s name wasn’t Mr. Pump. It was Charlene. Once she was named, she was easier to laugh at. And once I could laugh, I knew I would be okay. There would be questions and faltering steps, but I knew I could do this. And make it work.

Republishing: Perspective.

Violet, of Pumplandia fame, has suggested that I republish my posts from Ye Olde Blog. This one is called “Perspective” and touches upon the delicate balance of diabetes and physical love.

My body constantly makes its weaknesses known. I am embarrassed that, after you kiss me and run your hands down my body, that I have to disconnect the pump and put a pump cap on the site before we can continue having sex. The spot behind my knees becomes sweaty as you and I make love, and I wonder if I am aroused and sweaty from the athletics of lovemaking, or if my blood sugar is low. I wrap my arms around your shoulders. After we lay in an embrace for a few minutes, you whisper gently in my ear, “Do you need to test?” And I wish that you could enjoy my body and our intimacy instead of asking me to acknowledge my body’s mistakes.

But I test. And usually my blood sugar is low. And you trot off obligingly to retrieve some juice. I know exactly what it happening, even though my eyes are rolling in my head and my mouth is murmuring nonsense. We joke about work and talk about the trite bits of our days, and the mundane conversation tastes like chalk as my hypoglycemic mouth stumbles through the sentences. You stroke my hair and prompt me to stay awake, when all I want is to snuggle into the pillow and let the warm wave of unconsciousness wash over me.

I am afraid to get sick. People look at me and think that I am completely healthy. They don’t see the masked outline of my pump in my skirt. They don’t look at my fingertips and see the tough little pads of scar tissue. I wonder if I opened up my body and looked at the intricate organs inside, would some of them be rotted? Are my eyes hemorrhaging from the inside out? Will I wake up blind one day? Will my body keep me from becoming a mother? I used to worry endlessly that I would become pregnant. Now I worry that I won’t ever be. I know they can’t tell by looking at me, but sometimes I feel hollow. And sometimes I feel sick. But I don’t want to show it because one moment of external weakness could change the way you look at me forever. You said you don’t think about the diabetes. I can’t help but think about it every day, as I casually try and shove it back under the rug. I don’t want to think about it. But I know how my life might end. I know that someday I might be blind or on dialysis waiting patiently for a kidney transplant. And I know that if these ailments finally hunt me down and take me, I will feel guilty for not taking care of myself. For eating those secret snacks. For skipping the injections when I know I should have just taken the needle. For cheating. For calling it “cheating” and not forgiving myself for mistakes. My adult life, when I become sickly, will be riddled with regret and shame. I did this to myself. I just didn’t know. It’s hard to look at yourself in the mirror every day and see nothing wrong. My luck will run out.

I hope I am strong enough to forgive myself when it does.

My Diagnosis: The Remix.

And we talk about “how we found out.” Some of us had the itch of a few symptoms but couldn’t put a finger on what the Real Problem was. Others were sick — really sick – and diabetes ran through their bodies, leaving no cell unturned. I never experienced any of that. I was just a little kid. I ran around the house and annoyed my parents. I picked on my little sister. I played games with my brother. But I can remember the moments that changed Everything.

I had that fever when I was six. Had it during the week of my birthday and there was a later party that year, on account that I was very sick. Fever of 104.4 – highest I’ve ever had and it didn’t break for three days. Mom was frightened. I don’t remember Dad being there. And then I wasn’t sick anymore. Spring approached. I started wetting the bed again. At 6 ½ years old. How mortifying. Mom bought The Alarm that connected to the inside of my underwear. The slightest bit of moisture would connect the two tiny metal knobs together and the loudest most piercing alarm would sound, shrieking like a banshee from my underpants and waking me out of a sound sleep. I was probably at a very elevated blood sugar at that point, but how were we to know? I would run as though there was a Rottweiler chomping at my heels, tearing into my parent’s bedroom and my father would fumble about in my underwear, disconnecting the offensive hubs and the noise would mercifully cease. Courtney would come running in from her room and leap into the middle of the bed, huddling between my parents. Darrell would barrel up from downstairs, because the alarm was intense to the point where the whole house was woken up, and he would attempt to thwart imaginary burglars.

My diabetes was discovered on September 11, 1986 during my before school physical at Dr. Leong’s office.

I remember going into that strange angular clown bathroom and peeing in the cup. It was my most hated part of the appointments because I found it so excruciatingly embarrassing to have to pee in a cup and then trot through a crowded waiting room with it clutched desperately in my hands. There must have been ketones because I went to the hospital that afternoon. Things are jumbled at that point. I may have blocked some of it out because the shock was too intense for my 6 ½ year old self. I remember being at the Rhode Island hospital and Mom and Dad were both there. I remember being told that I had diabetes but not knowing what that was. I was both horrified and mystified at the fact that neither of my parents knew what it was either.

I remember pressing the needle against the unfeeling skin of an orange, practicing how to give my shot, sitting at a table while my parents spoke with the specialist. “The skin of an orange is just like the skin of a human being. Once you practice enough, you’ll barely feel a thing.” The pinchy tip of the needle darted in and out of the dimples of the orange, and The Doctors were right: I didn’t feel anything.

Until that needle went in to me.

Repeating Myself.

My other blog has been dismantled, so I’m republishing my last entry Here, on New Blog. I apologize for the repeat performance. New, fresh material coming soon. Promise.

Aside from the normal perimeters of a friendship, like the endless phone calls about a breakup, potential new job opportunity, a new relationship or the stupid thing I said in front of fifty people at work, my friends take special note of my needs as a diabetic.

It’s hard to put myself in their place, meeting Me for the first time and knowing nothing about diabetes. Most people have an aunt or a grandfather who- and this is verbatim almost every time- “had diabetes but died from it.” According to the people in my circles, no one knows a living diabetic. They’re all dead. The one person who did know a young diabetic, and one on the pump as well, didn’t have any real information on the disease. “She wore a pump, yeah. And one time, when she was really angry, I saw her throw pumpkins at her boyfriend.”

Because that’s normal.

So these people who meet me are finding, for what appears to be the first time, a diabetic peer. Not some old person in the twilight of their lives. So I go out to dinner with them. And work beside them. And go to concerts with them.

I went to see Muse at Providence College a few weekends ago. My friend “Batman” (I am reluctant to post names on this site … hey Batman, if it’s okay to call you by Real Name on here, post me. But for now, you remain Batman.) and I went. She’s a good kid. The kind of friend that asks fifty million questions about the disease – “Is 145 mg/dl high??” “Do you need juice?” “Are you low or just being weird?” “Do you want a cookie for fun or to treat a low?” – and then, once she’s comfortable, the girl is Prepared. At all times. Even when I’m not with her. She’s pulled squashed, month old granola bars from the depths of her purse, exclaiming, “Hey, I threw this in here in case you got low.” This is the same girl who keeps Equal in her wallet when we go to dinner. What’s my point about Muse? I’m getting there.

So we’re at the concert. And there are people bouncing about everywhere. Tiny little girls. Huge, hulking college boys. And everyone in between. Batman and I are close to the stage, and the ever annoying Mosh Pit breaks out to my right. I don’t think much of it, but Batman leaps Ninja Style in front of me, blocking my body with her outstretched arms.

“What the hell are you doing?”

She pushed a guy back into the throng as she answered over her shoulder. “Your pump! It’s in your right hand pocket. I don’t want it to get crushed.”

And I reveled in the way her kind heart works as she protected me and my machine from the dancing masses. Batman’s a good kid.

This is the way my friends react. As though it’s natural to have two bottles of juice roaming around unsupervised in their cars in case I become low. As though it’s natural to make a big dinner and have the carbohydrate content worked out in advance so I can bolus for it. As though it’s normal to jump in front of the Mosh Pit to protect my pump.

They make me feel like it’s normal to be diabetic.

And I love them dearly for this.

(I would never throw a pumpkin.)

 

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