So this is my first post here, on TuDiabetes. I've been to a few support groups in the last few days. Though I've been a diagnosed diabetic since 2005, I haven't really faced it or owned up to my responsibility for managing my health. I find diabetes really limiting- the need for so much structure when so much in my life, at 24 years old, requires me to be so flexible, and so much is uncertain. But the fact is, I'm a diabetic whether I want to be or not. I can run all I want, but it'll be there. It's time for me to face the facts, and deal with it before it kills me. So honestly, right now I feel like the worst diabetic ever- and for the first time I don't care if everyone knows it. At least they know at all. In the past, I've dealt with a complete lack of acknowledgement of my disease from others. There are no other diabetics in my family, and I have no diabetic friends. Yesterday was the first time I've ever met another type 1 diabetic my age in my entire life. I go to the support groups because I need to see that other people live with this- that it isn't as much a burden as I seemed to think it was. I need to own my mistakes. So here goes- I hope you are able to deal with me being so personal.
Currently, I have nothing but time to waste, as I am on 8 weeks of stress-free (at least I can aspire to it) medical EI. This will be my 2nd time on medical EI since the end of 2008. I had dreams once- even realistic ones. I wanted to go to college and perfect my passions, and "be somebody". Diabetes took that away. When I was diagnosed, I had just moved out on my own, just moved in with my boyfriend, and just moved across the province. I was helping to support my then-boyfriend as he went to Film School, and once he was done, it was supposed to be my turn. But after I was diagnosed, there was no way we could afford to even try. Taking a year off became taking two, became taking 4. I graduated from high school 7 years ago. College is still that unattainable dream.
The year before my diagnosis, when I was 18, one of my kidneys failed because of an undiagnosed UTI, and I blamed my doctor. I’d seen him about it and he called it stress and gave me anti-anxiety pills. But I am extremely prone to anxiety, so I dismissed it. When my kidney failed I got a second opinion, and was told that I was going to have a chronic condition called Proteinuria. Sadly, the doctor that properly diagnosed and treated me was not my GP. All I was told was that the pills I would have to take would keep my kidney functioning, but that eventually, the condition would degrade my kidney so badly that I would need a transplant. I was told to expect a kidney transplant by 40. To me that was a lifetime, and I was too naive to ask for more answers. This event should have been the point that I asked more questions. I didn’t. I took my proverbial bandaid and went back to my life, same as it ever was.
Almost my whole life, I had experienced poor circulation in my hands and feet. Even in room temperature buildings, my hands and feet were frozen cold. Standing in one spot too long, I would experience nonexistent circulation in my legs, which would begin to turn purple from my toes to my thighs. When it was too hot, or cold, or when I was sick, my legs would swell. When I was 14, my Uncle asked me if I was diabetic. I had no idea what that even was, so of course I said no, and never thought about it again. Stupid, but at that age, somehow you’re sure if something like that were wrong with you, your parents would know. You don’t listen to your body.
Well, the following year after my big move, when I had turned 19, I was working at a Quizno’s, serving sandwiches to people for 8 hours a day, on my feet. As I had experienced since the beginning of Junior High, occasionally I would get intense, debilitating stomach aches during work. It would feel like someone was twirling my insides together like pasta around a fork. I had learned in Junior High that eating was a quick fix. I often forgot to eat, or didn’t get breaks at work. At Quizno’s, since we didn’t take breaks, I was encouraged to eat bread ends out of a bucket. Sometimes we’d put sauce on them, or cheese, and I would eat them until the pain went away. Some days it was too busy to try, so I’d try to work through the pain. For awhile that worked. Eventually, the pain worsened, and I started experiencing overwhelming dizziness, and muscle weakness in my hands. I would shake, and lose my dexterity. I would need to vomit, or sit down. Still I ignored it, sure I had just gone too long without eating.
After an 8 hour workday, I would buy myself a 12" Italian Sub (peppers, olives, onions, salami, dressing, cheese) and I would start my half hour walk home, passing through Starbucks to get myself a Venti Vanilla Frappuccino with a mound of heavenly whipped cream ontop. By the time I reached the top of the steep hill I lived on, (roughly a 20 min walk), I would be finished consuming the frappuccino. I’d get through my door, sit on the couch, eat my sub, and then wake up hours later, often with the wrapper still in my hand. There were days I forgot how I got home. There were times I woke up not knowing how long I’d been out, or what day it was. Sometimes I woke up at 8 at night, and panicked to get ready to go to work, thinking it was 8am. I even ignored that. It never dawned on me that there was a reason I was so tired, other than that I was working hard.
But then I switched jobs, and had to take a second job, and money was tight. I was working 16 hour days, with no break, aside from the half hour between one job and the next. Myself and my then-boyfriend lived off of leftover pizza from work. I would be up at 5am, our the door by 5:30 and at work by 6:00. I would finish that job at 2:00pm, without having taken a break, change, and be at my next job by 2:30. I would finish that shift at midnight. I burned my candle at both ends for two months, until I started to forget things. Someone would teach me something at work, and I’d forget it only minutes later. I’d have to start things over and over and over again. I took so long to get things right. I remember one particularly bad night when a woman walked in at 11:30 at night when the floors were finally done and the tables were away, and I was almost finished closing. Thinking about all the work I would have to re-do, and the extra time ontop of my 16 hour day I would have to put in, I had an enormous mood swing. The symtoms were present all the time, and overwhelmed everything I did. I lost that job rather quickly.
I ignored my body until my life was falling apart. My boyfriend and I were fighting, I could barely function. When I finally saw a doctor, I was briefly misdiagnosed as a hypoglyciemic, but was asked to get myself a GP. So I got a new doctor, and was retested. It was then that I was told that I was a diabetic. They told me I was too old to be a juvenile diabetic, and purely because of my age, they diagnosed me as a type 2. They tried treating me with pills.
My ex was… completely unsupportive, and mean. People have this preconceived notion that if you’re diabetic, it’s your fault (especially if you’re a type 2). It’s not so. Any time I spoke of my diabetes, I was told I was making excuses and he treated me like my being diabetic was something I was inflicting on him. If I was passing out, or vomiting, or having a tantrum, I was making excuses. Any time I had no money, or couldn’t bring tempting food into the house, I was making excuses. I didn’t have a supportive partner to hold my hand and understand what it as like to feel helpless to control a disease that limits and controls you so much. And he was resentful of my asking him to be there for me. He didn't just ignore it, he would retaliate. Over the years, the lack of support and constant antagonism surrounding the treatment of my diabetes forced me to ignore it. I paid bills instead of buying pills. I ate crap so that we could afford to do or buy nice things. I ate crap that my ex ate so that caring for myself didn’t instigate fights.
The most ironic thing is that his Dad is a type 2 diabetic. And his whole family is compliant to the diabetic diet. Their sleep schedules, their visitors, their meals, are all timed around his Dad’s life. Maybe that’s what made him so resentful of me. I couldn't get him to come to the education classes, and he kept trying to force on me what he thought he knew about it. I told myself I didn’t deserve the support. I told myself that if ignoring it killed me then I was just getting what I deserved for having done whatever horrible thing caused my diabetes in the first place. Worse, I turned to food to deal with my depression. I ate bad food, and it made me feel bad and made me sick, and my depression grew, so I ate more food. And I ignored how the pounds of my body were melting away. I was dropping almost 11 pounds a month, rather visibly, for a year. Something in my head saw this as an upside. I went from 300lbs to 173 (almost HALF of my body weight!). I would need to buy new clothes every few weeks, as my old ones seemed to grow enormous on my body until they were unwearable.
My ex and I split- it was ugly, and horrible, I had to move in with my sister, and the whole ordeal took a major toll on my health. I got very sick. For two days I threw up everything I tried to eat. I saw a doctor who gave me some gravol and told me to try and eat unsweetened apple sauce. He knew I was diabetic, so I assumed it was ok. I ate some (not all) and passed out on the couch. When I woke up I was pouring sweat. I had jaundice, and the skin around my eyes was purplish. I was so dizzy, and so thirsty. I called 911. They told me I had the stomach flu and to just ride it out. So I went to bed, and woke up 6 hours later. I thought I was having an asthma attack, but my inhaler didn’t work. Then I thought maybe I was choking, only I could breathe in, but it was like there was no oxygen in the air. I begged my ex to take me to the hospital, because the paramedics had already come. He refused and called me a hypochondriac. I tried to calm down, tried to listen to him, but I was suffocating. He actually tried to stop me from calling an ambulance.
I passed out in our hallway calling 911 on my cell phone. When I woke up, I woke up with an IV, strapped to a heart monitor, with a catheter in, two days later. I had Acute DKA. My heart had stopped. I almost didn't make it. The nurses and my doctor kept telling me that I wasn’t going to make it. I was sure it was the end. It wasn’t. I survived. I survived the biggest transition of my life- breaking up, getting sick and recovering, and moving home. But more than ever, I resented my diabetes. Especially since my recovery forced my endocrinologist to acknowledge that not only am I a type 1, but that I have been diabetic since I was a kid. Know thyself, ladies and gents. It will save your life.
I’ve been in a period of resentment for years, of wavering resolve to deal with my diabetes. In the past, I’ve absolutely binged on food I knew would probably kill me, out of some need to prove that it was all some huge lie, that it wasn’t true. Now, I try for awhile and quit, I try for awhile and give in to temptation to wanting to be normal. I try for awhile and money gets so tight that I tell myself I can treat myself just enough to stay alive. But it’s a lie. It’s my ex in my head still telling me that diabetes is just an excuse. It isn’t.
So I take responsibility for my part. I’m currently not in the best of health, and facing the very real risk of DKA again. But I won’t do that again. Now I have something to live for. Now I have a support system, things to aspire to, people who acknowledge how hard it is to live this way. I don’t need to feel like the poor freak, making excuses. I don’t need to feel ashamed, either, for being such a crappy diabetic, because I know THAT WAS THEN, and THIS IS NOW.
Today I am still under 200lbs, and more active than I ever have been in my life. I'm getting married in two months, to a wonderful man who has been to every clinic and every appointment with me, who knows how to test me and inject me. He recognizes my highs and lows before I do. I have a beautiful 5 year-old step-daughter who turns 6 next month. I turn 25 in 51 days. Today, I am starting yoga and pilates with my Mom, going on bike rides, hiking, kayaking, and looking into joining a dragonboating team this summer. I am doing things I never thought I would be physically capable of. Today I am a subscriber to Diabetic Living, and making a cookbook for my family that consists of meal and snack-portioned recipes made with foods that are low on the glycemic index (from magazines and books). On weekends, my kitchen is often home to many bowls of soaking beans, or zero-point soup (if I'm hungry and I need to eat some free food).
So I was a crappy diabetic- I'm not anymore. Today I talked to the diabetes clinic at the hospital about qualifying for an insulin pump, and about meeting with my endocrinologist to sit down and talk about planning to have a baby. That's my diabetes story.
(Humalong/Lantus – Pens)