I guess a little background is in order, to set the stage. I find diagnosis stories fascinating - they are like births to me. If you don't share the sentiment, feel free to move on. I understand. It's a touch emo, no?
Without further ado, I'd like to introduce you to Me Before Diabetes.
The basic Kendra model, version 2/19/84. Third child of my father, first child of my mother, only daughter for both. Undamaged goods. Early to walk and talk and read, read, read voraciously. Lover of animals and my little brother. Stepped on a bee with my bare foot and lived to tell about it. Favorite food: peanut butter. I'm eight years old and everyone in my family has the flu, except for me. I'm mostly shy.
I'm growing up and developing a love for HTML and the Smashing Pumpkins. I've met my first real boyfriend on a James Iha messageboard, and boy is it getting heavy. Even if he is in Australia. (Yikes.) This guy I go to school with is giving me hell for being in a long distance relationship. He bets I'd date him if he was tall and skinny. He tells me I treat him like shit. I thought we were just friends, I never led him to believe anything else. He's spreading rumors about me now.
Getting enmeshed in all of the hysteria that goes with applying to colleges; I'm the smart one, you know, so no pressure but Mom says maybe you should apply to Columbia and UVA just in case you get in, wouldn't that be neat? Walking around with the shining cloak of invincibility flapping in the wind of my youth . . . ahhh. Heck yes, I'll have another serving of lasagna. Jeez, I never knew you had to have so many vaccinations just to go to school. How many shots have I had just in this past week? Ow.
Talking to my boyfriend about the importance of physical fitness; and hey Dad, can you back off? I'm not THAT skinny . . . but to be honest my butt sort of hurts, so can I see a doc? Oh you have got to be kidding me. "Pilonidal cyst"? Ewwww. I guess I have been spending a lot of time in a computer chair. Fine, I'll take the antibiotics. I'm healthy, this is an easy fix! Wow, I'm only 115 pounds? I'm usually about 125. Guess maybe Dad is right.
I'm 18! I'm legal! Obligatory celebratory dinner at Outback with the fam. I get a free piece of cheesecake. MAN am I tired now; I guess I ate too much.
Running around the halls at school, becoming a regular visitor at the water fountain between classes. I sure am thirsty these days. I think it's because I'm so stressed out; all these AP classes take it out of you. And what if I don't get into my first choice school? I don't even know what I want to do yet anyways. Gosh I am really thirsty. I think I'll start bringing two soda cans with me in the car in the morning. That ought to get me through first period, anyway. I never used to drink very much before, but maybe I'm just catching on to the bottled water craze a little late. Now I know what everyone else feels like. And y'know I'm not the ONLY person to have 3 refills of Hawaiian Punch at Pizza Hut, jeez.
Finally, Spring Break. I can just REST for a while now. We're going to my aunt and uncle's in Philly for Easter dinner. I'm packing for the trip but I wish I could just take a nap. I take naps every day. Dad tells me I should go exercise but I just . . . I just have NO energy after school. I need that nap I tell ya. I put my head on the pillow and I'm gone for a couple of hours. It doesn't help the school situation though; there's too much homework to sleep for long. Well I also think I'm so sleepy because I have to get up and pee about three times a night.
You know, I looked up "frequent urination" and "thirst" on the internet today, just because these two habits are getting pretty extreme. The only thing that came up was diabetes. Yeah right, like I have diabetes. I've only met one person in my whole life with diabetes, and that was when I was like four. I don't have a serious illness. It's just senioritis. It's almost over.
We're stopping for gas on the way. Oooh, Code Red Mountain Dew! A true sign of nerdliness is consuming this beverage in huge amounts, and I do love my nerds. I'm getting 32 ounces of this stuff!
We're stopping again; Dad's bladder is impatient and so is mine. McDonald's? Sigh, not a fan. But Dad's grumbling as he gets back into the car and he shoves a large vanilla shake at me. "Drink this, you are too thin!" Okay, okay. I'm not one to turn down some ice cream, anyway. I'll drink it.
We are finally at the rel's house. I have a huge headache at this point and my stomach is feeling a little rebellious, but I'll converse with the cousins, make nice with grandma, etc. Have several bowls of chicken soup . . . all that wet, it tastes so good. Feeling a little better now. Chat with boyfriend. "Yeah, I feel pretty nauseous, I think I'll just hit the hay early. Talk to you tomorrow." Oh but before I go brush my teeth I just have to have something else to drink . . . I polish off the entire carton of orange juice (oops, I'll replace it, promise...) Climbing into my cousin's loft bed. I'm down for the count.
Oh, oh, oh. When was the last time I felt this feeling? The room is spinning. Wow. I might as well get up and take a shower. Ohh jeez. Standing up was a bad idea. I'm going to be sick. I haven't thrown up in six years. I hate throwing up, it pulls my back muscles. Oh, I feel like twice-baked shite. The toilet smells. Here we go again. Man. At least my stomach is empty now, that should be the last of it. I think I'll go lay down again.
It's 11:00. Sorry Mom, I know I was going to help you and Aunt M. cook but I really just don't feel well...yeah I don't know either, usually I can walk it off but I feel really sick. What a bummer, it's Easter Sunday! Yeah, I know Uncle S. just got over the flu. There must be something going around in Philly. I'm just going to lay down for awhile. I hope I'm over it by this evening; it sure smells good down there! I love food.
Aunt M. makes me move to my other cousin's room because I'm starting to have trouble climbing into the loft bed. I've made about five trips to the bathroom because I have to pee all the time. Bad part is, every time I stand up I feel like I have to puke. So I puke, then I pee. Then I puke, then I pee. I'm well beyond the stomach-bile part and into the dry heaving. This flu isn't screwing around. I'm just going to try and sleep.
Dad brings me toast, yogurt, a banana, and some tea with jelly. I eat it, but what I really want is FLUID. Too bad the city water here tastes A W F U L. Dad, can you get me some Gatorade?
I think I drank at least 4 bottles of Gatorade between 11 am and 5pm. I'm getting really tired, I should probably just try and rest. My lips are sticking to my gums though and when I pulled them apart they started to bleed. It really hurts. And my mouth tastes like a woodchuck died in it. I'm pissed I'm going to miss dinner. I drink some more Gatorade. Gatorade's supposed to be really good for you when you're sick. Please Mom, I do not look like a Holocaust victim. Well yeah I have big circles under my eyes but I've spent the whole day puking. I bet you wouldn't look so hot, either.
Oh, who's this Mom? Aunt M's sister in law? She's a nurse and she'll take a look at me? Okay fine, but I just have the flu. I just need to go home and rest and stay hydrated. I think it's under control.
"Get Louise's glucose meter."
Glucose meter? Mom echos the question. Aunt M gets a horrified look on her face, but disappears and returns with my grandmother's meter. A doctor told my grandmom she was diabetic once, but all of her other doctors say she isn't really - she's just old and things aren't working as well as they should. But she still has her meter.
"Can I have your finger? It's just going to be a little stick."
Fine whatever, I'm really tired. Can you just let me sleep some more? Sleeping is the only time I don't feel absolutely horrible. My head is really heavy, i feel like I'm on one of those old timey carnival rides where you get stuck to the wall . . .
"She has diabetes. She needs to go the emergency room right now." I see the meter in her hand says "HI." Hi to you, too. She leans toward me and sniffs me. "Well, I don't smell anything but she needs to go."
I snap out of my fugue. Anger and frustration is flooding me. A second ago I was tired, now I am PISSED OFF. Tears cloud my eyes - where did my body find the water for tears?
"I don't want to be a goddamned diabetic!" I snarl at anyone in the room. My Mom just looks at me. I rub my eyes furiously, covering my face. I wish they'd all stop looking at me. I know it is true, in every starved cell of my body. I'm a diabetic. Oh god, oh shit . . .
Dad snaps into action. "I'll get her coat."
I am helped down the stairs and into the car by my parents, one at each shoulder. I feel like an invalid. What is this crazy bad trip? What..? Mom says we're going to Bryn Mawr Hospital; apparently they have a really good diabetes education program there. According to Aunt M's sister in law anyway. Diabetes education? God I hope I don't puke in the car. That'd be gross.
Out of the car and into the ER. I hover behind my parents as they approach the nurse at the desk, swaying slightly on my feet. I see a man with his elderly mother sitting in the plastic seats. Dad and Mom explain. The nurse immediately comes out and sniffs me. What the hell is with the sniffing, people?
"Well sometimes diabetics smell like rubbing alcohol or fruit. Whatever, she needs to get hooked up to IV fluids right now." She ushers me into a side room with a cot and lots of IV hangy-bag thingies. I hear the man angrily saying "I was here first!" "Yes, well, she is going to die if we don't take her right now and your mother only has a broken arm."
I'm DYING?
My mother starts to cry as a young male nurse hooks me up to the fluids. I lay back on the bed, trying to let this sink in. Was I really dying just now? Did someone just save my life?
"Is this going to go away?" Mom asks the nurse.
"No, it never goes away."
"She'll have it for the rest of her life?"
"Yes. She has juvenile diabetes, it's permanent. Hey, how old is she?"
"Eighteen."
"Oh wow, she's lucky. Just snuck in!"
I'm LUCKY? I kind of want to kick him in the balls. My legs are starting to shake uncontrollably; there's a new nurse now and he explains it's because of the temperature of the fluid. Hey, despite the shaking I actually am feeling tons better.
I'm kind of hungry, actually.
Mom and Dad sit in the plastic seats and watch my legs tremble. If you looked up "shellshocked" in the dictionary, a portrait of them would be there.
A young doctor walks up with a clipboard.
"How do you feel?"
I'm feeling enough like myself to laugh sarcastically.
"Oh, I'm great," I reply. I don't think I've ever tried to be that much of an ass before. I have had it.
He laughs uncomfortably. "Well, would you like something to eat?"
"Yeah, sure, I'm missing Easter dinner."
I get lasagna, salad, and a roll. I eat it all. Mom remarks on how much better I seem, and it has only been 45 minutes. I feel pretty much normal. I give her boyfriend's email address and to please email him and tell him what has happened, because I had promised to call him that evening.
I get moved to the pediatric ward - I'm 18 and lucky after all. Just snuck in. I have to share a room with a little girl who has compound fractures in both of her arms, thanks to a gymnastics horse. (I never was any good at gymnastics.) Her parents talk about me in hushed tones that night. "What a tragedy," they whisper. The little girl cries from the pain and they bring her ice cream and candy to soothe her. I feel ashamed to be a tragedy. I cry bitterly (silently) as I listen to her eat the ice cream behind the curtain. Her arms will heal, but I'm a permanent tragedy.
Nurses poke me periodically through the night; I assume these are my first glucose tests and insulin shots. The next morning a nurse insists on me performing the glucose test myself. The tester is huge and arcane and requires a lot of blood. I squeeze the tip of my finger very hard, so hard it hurts. I put the blood on the strip. It isn't enough. She chastises me. "That isn't enough! You have to get more blood out! You just wasted a strip, and they are expensive. Oh here, I'll do it, but you're going to have to learn how to do this really soon." She grabs my finger and about squeezes it off. She doesn't tell me what the number is, but she does give me a shot. I just feel mildly harassed and really grody. I want to take a shower but those people are over there and I don't want them to whisper about me when I walk past them. I'm 18 years old in a hospital gown, lugging around an IV cart. And I look like hell. No contest to the cute 6 year old in dual arm casts being plied with lollipops.
I end up staying in the hospital for 3 days, until I'm so bored I can't take it anymore. I have had a crash course on diabetes. I think I'm kind of numb. My parents look like they have aged 10 years. Besides I only have 4 days of Spring Break left, and if I spend it all in a hospital I might start missing some school...and I have homework to get done.
That night we go to a CVS. I pick up Humulin and Humalog vials and worry about mixing them wrong. My best friend comes over to my house and gives me my first shot in my arm, but the insuiln shoots back out. Newbie error.
The next morning, I call my boyfriend. His voice is hollow, and scared. He said he took the day off work when he found out. That it punched him in the gut. That he cried all day. I didn't share his sentiment exactly. I don't think I was there yet. I worried beyond belief that he would break up with me . . . we had discussed the importance of our good health before, and now mine was gone. I wasn't healthy anymore. Damaged goods. So instead of telling him that I was a tragedy now, I told him over and over how good I felt. How things were going to be okay. I'm going to be okay. This is liveable. I can do this. Please don't worry about me, I'll be okay.
Later that day I carefully measured out macaroni and cheese, and carefully took my shot. My blood sugars stayed below 150. Mom made me an appointment with the only endocrinologist in town. I did some homework.
So, pleased to meet you. I am Kendra, version 3/31/2002.
Since that major release, I have had a few minor upgrades (first to Lantus and Humalog pens, and now to Novolog and the Minimed pump).
I guess I am still okay.
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2 comments:
Over time, you may find the memories of the time before and around the hospitalization will fade. Some of it will always stick with you. I remember huge cravings for Shamrock shakes from McDonald's, because it was in March 1985 that it all changed for me. I also remember a craving for Mr. Pibb sodas, that I used to get when a kid and my family took vacations in northwestern PA. At the hospital, after moving out of intensive care I ended up in a room with a young man who was blind. I got a pretty good education about the insulins and food plans of the time, but there was really nothing done to prepare me for the psychological onslaught. I ended up crying once in the hospital; it was when the educator was asking me if protein would raise my blood sugar, and I said, "No," because that's what I remembered reading in the reading material. She told me I was wrong, and I felt so awful.
As it turns out, I was probably right. Some diabetics will observe a rise in glucose after eating enough protein, and others don't. So far I haven't found an amount of protein that affects my blood sugars.
Sorry that I rambled on so much here. It's just that this a topic which will bring up lots of feelings in many type 1 diabetics. I think you are likely going to do better with the psychological facets than I did, for many years afterwards I couldn't bring myself to talk much about it all. You seem to be doing better in expressing things.
--the reflux guy
Thanks for sharing your dx story. Every time I read one of these, I have to go cry. They suck. Every last one of them.
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