My 10-year “diaversary” (10 years since being diagnosed with diabetes) is coming up in a few days. In preparing a post for that day (stay tuned!) I decided to read through some old journals from 10 years ago.
I debated whether or not to blog about my story, but I feel like it might actually be useful to someone, someday. I hope my experience can help someone know that they are not alone, that diabetes is not their fault, and that they deserve the best medical care available.
What follows is an account of my first 6 months of having Type 1.
I am visiting my parents’ house for a long weekend away from college. I off-handedly remark that I’m annoyed about having to pee so much. My mom (who is a nurse) wonders if I might have high blood sugar. My dad (who has Type 2 Diabetes) has a glucometer. They test my blood sugar, which is off-the-charts, too high to be read by the meter. I avoid carbs for the rest of the day and go on several long walks, which brings my blood sugar down a little bit. They decide against taking me to the ER because being admitted would be expensive and time-consuming. I don’t know any better and spend the night swimming in confusion and self loathing:
[Excerpt from my journal dated 2.15.09]
Honestly, [this] all seems slightly ridiculous to me, really I feel like I’m in ship-shape… Basically, it’s about 100% guaranteed that I have diabetes.
What can I say about this? I guess my first reaction is – wow, am I really that unhealthy? I know that I am not the best person in the world at healthy living, but I didn’t think I was so bad. I guess I was wrong. I’m sort of angry at myself to be honest. I know better. Why didn’t I take care of myself? This is all my fault, I have no one else to blame.
My parents take me to Urgent Care where I am (mis)diagnosed with Type 2 diabetes. They don’t even complete lab tests to see if I might have Type 1. I continue spiraling in self-loathing.
[Excerpt from my journal dated 2.16.09, right after being seen at an Urgent Care]
Well it’s official, I’m diabetic… I can’t help but feel ashamed of and disappointed in myself. I know that it is not completely my fault, but I can’t help but wish I would’ve prevented this from happening. I don’t know. I’m embarrassed, ashamed, afraid, and confused.
I don’t like feeling “diseased.” I feel tainted, freakish, abnormal. I just want to be healthy and now I feel like that will never be an option. I don’t understand one bit. Why would this be a part of my life? I know that things happen for a reason, but what possible reason could a disease have? Why, why, why?
I know I need to change my attitude about this, but I can’t seem to stop struggling…
I visit my parents’ primary care provider who tells me he thinks I have an autoimmune disease and that my immune system is attacking my pancreas, causing diabetes. I am given long-acting insulin and start giving myself a shot once per day. I also start taking Metformin, a medication usually used for Type 2 diabetics. The pills make me nauseous. I am told to restrict my diet and feel I can “hardly eat anything at all.”
I get the results from the blood tests, confirming that “my immune system is attacking my pancreas, causing Type 1 diabetes.”
I return to my primary care provider to get a new treatment plan, since the results show that I have Type 1. He prescribes a larger dose of long-acting insulin in the morning and a smaller dose of the Metformin to get rid of the nausea. I still am not given fast-acting insulin to use with meals and am essentially following a treatment plan for Type 2 Diabetes.
I see a dietician on campus to see if she can help me figure out what I can and can’t eat. I’ve kept a log for several days and she tells me I need to eat more carbs. This is confusing, but also exciting because it means my diet can be a tiny bit less restrictive. I thought I was supposed to basically avoid carbs at all costs, since they wreaked havoc on my blood sugar. What I really needed was to be able to eat carbs, but also cover those carbs with fast-acting insulin. I still had no prescription for this.
I return to my primary care doctor and am told to increase the medication I’m already taking. Even though my blood sugars had been “a lot higher in the last week or so, despite my efforts to keep it under control,” I am still not prescribed fast-acting insulin. Bizarrely, the doctor tells me that most people with Type 1 diabetes have trouble having kids.
I’ve been living with Type 1 for almost 4 months and I am feeling exhausted, overwhelmed, and hopeless.
[Excerpt from Diabetes Daily Forum, dated 6.3.2009]
… I’m just getting tired of it. I don’t want to deal with it anymore, you know? I know it will never ever go away… but I just don’t want it anymore. I don’t want to think about it, I don’t want to have it. I’m just exhausted by all of it…
I’m tired of feeling like I’ve got something to be ashamed of. I’m tired of everyone asking questions. I’m tired of feeling like this is somehow all my fault and that if I would have just done something, anything, different in my life before I got diagnosed, then I wouldn’t be in this mess. Some days I just want to quit…
I want to be in control of my life again, but right now I just feel like everything is so out of my control and there’s just nothing I can do about it…
I want to conquer my diabetes, but it’s not exactly conquerable if its chronic… I feel defeated… I just wish it would simply go away. That’s all.
I finally start a treatment plan for Type 1 diabetes and am prescribed fast-acting insulin, so I can eat without fear of skyrocketing blood sugar. I’m also going through a period of depression and the doctor tells me that diabetics are even more likely than the general population to suffer serious depression. They offer no support, referral, or even a recommendation to see a mental health professional.
The commentary in my journal about diabetes falls off a bit from here, making only occasional appearances. In a lot of ways, I think that was a good sign. It meant that I was finally getting proper medical care and that diabetes was starting to become a normal part of my life. It stopped being quite so constantly overwhelming an became more like the annoying background music in my day-to-day life.