A brief history in my diabetes

Before I start this post I just wanted to say thanks to the fellow people with diabetes I met last weekend at Mall of America. I had a great time!! I think I forgot what it was like to be around people who know what its like to have diabetes. Sunday evening I felt more like a person than a diabetic. You all helped me see that I am NOT alone living with the frustrations of diabetes, so THANKS Allison, Scott, Sandy, Bob, and Heather!! (That's the order of everyone in the pic too with me at the end on the right.) I hope we get together again soon!

Going to the meet up made me realize that there are a lot of things I haven't talked about in my blog that is related to diabetes. Like what it was like having diabetes as a teenager, young adult, in college, and such. Reading Penny's post from last week also touched on a nerve of mine too - the fear of complications.
So I wanted to write about what it was like growing up with diabetes as a kid, what worked, what didn't work, what went wrong, and what went well. This will probably take more than one post...

When I was diagnosed with diabetes I was nine. I went to Children's Hospital in St. Paul and stayed there two weeks learning about how to take care of myself with diabetes. My Mom was there learning too. We left with syringes, NPH and regular insulin, a glucometer from LifeScan OneTouch, and a log book. I was warned about keeping my blood sugars in control in the 120-180 range, keeping my A1c under 8, and eating right in order to stay physically healthy. I was also warned that getting sick has bad effects on blood sugars and to closely monitor my blood sugar when I was sick. I was essentially told that getting the flu was so dangerous that it could kill me and if I ever got the flu that I should be brought to the hospital. Thank GOD I didn't get the flu when I was younger. I don't think I've had the flu once since being diagnosed actually...

And that was it. I had a lot of follow up appointments in the first year after being diagnosed. It was always during the day so I would miss a day of school to go to my appointments. My Mom would make that a special day to help ease the "going to the doctors - again" stigma and would spend the whole day with me. I liked these days with her, I liked going to the doctor and talking about diabetes. That's pretty much how it went for the first year.

Now, I don't remember when things started to fall apart. I know I kept a "good for the time A1c" as a kid/preteen (basically an A1c under 8 when I was a kid was what was "good"). But I also know that sometime in my preteen/teenage years things went really bad. My A1c jumped in the matter of months from 8, to 9, to 10, to 11. I want to say that this was around when I was 13 or 14 years old. By the time I was 15 my A1c was somewhere around 12 or 13 and stayed there until I finished high school. I don't know what the hell I was thinking. Because I had such a bad A1c I went to diabetes counseling where we talked about my feelings on having diabetes. I was young, I was smart, and I was a liar. I said to everyone in my life that I was okay with it because it forced me to lead a healthier lifestyle. I said that it forced me to be aware of nutritional values, and that I was grateful for that knowledge because so many kids my age didn't care how much sugar they consumed, but I did. Lies. All lies.

I don't know if I was just that convincing in my lies or if the counselor could see through them but simply didn't know how to reach me. I know that even today a lot of my friends and family are surprised to hear that I am struggling with depression telling me that I always appear happy. Whatever the reason, I was able to spew these lies despite a terrible A1c. Looking back, a part of me wishes someone had shaken me saying "Your actions are telling us something entirely different Amber! If you really felt that way about diabetes you wouldn't have such a high A1c. You would be testing your blood sugars more, taking your insulin on time, recording what you're doing. But you aren't doing any that. Why aren't you doing that?"

Instead of asking me these things though, I was told terrible diabetes complication stories. About my Mom's coworker who at one time worked with a young woman who had diabetes and appeared fine until she got an infection on her toe and had to have her leg amputated and shortly there after died. Or how another patients sister while pregnant with uncontrolled diabetes because she wasn't testing her blood sugars, went into DKA, lost the baby and died too. Or how someone else went blind from uncontrolled diabetes and couldn't have a normal life anymore since they couldn't draw up the insulin into the syringe , let alone test and give their own shot. I mean, literally, that was what I was given as a warning call. The horror stories of others uncontrolled diabetes and what happened, and always, at the end of the story the phrase, "You don't want that to happen to you, do you?"

The uncontrolled story of my diabetes history is a huge part of it. During high school I hardly tested and rarely took injections on time. I continued to lie about my feelings on living with diabetes. And the summer after my first year in college managed to have an A1c of 17 at which point someone, my nurse practitoner who I saw for my diabetes, did shake me up with the words, "You are trying to kill yourself! Something needs to change! You CAN'T keep on living like this!" I was 19 at the time, working full time and about to start another full time semester at Hamline Univerisity. My idea of change was to cut back my hours to 30 hours/week while taking 15 credits. Needless to say, that didn't work well and a month into the semester I withdrew from school to focus on my diabetes.

But instead I dove head first into work. got my first apartment, worked as much overtime as I could, even getting a second job. I did manage to lower my A1c in all of this work to 13, but it sayted there for a while. I still didn't test as much as I should have, but at least it was an improvement I told myself. But what made it worse was keeping diabetes on a back burner. Letting it simmer with out a close eye watching it to prevent it from boiling over. Letting myself fixate everything else but the management of my diabetes. Hell, I was young, simply trying to stay a float.

It took me a long time to stop lying to myself and others about diabetes, to stop running from it. By the time I was 22 I was just beginning to see that I despised diabetes. I hated that when ever I was upset my family and closest friends would ask me "Whats your blood sugar?" instead of "Whats wrong, Amber?" I hated that everyone always seemed to know what I was doing wrong but not how to help me do something right for a change. I hated seeing that my blood sugar was high because it meant that I failed at trying to help myself, which was why I hated testing my blood sugar. Hated it.

Now, I know I am doing a lot of complaining here. I am very good at complaining I think. But I just wanted to show that lying to yourself, at any age, about diabetes is a bad idea. It took me a long time to realize that in lying to myself, my doctors, and support team I was denying my self the chance to make things better. I was what was holding back better control, and I was the antagonist in my diabetes story. Not the disease, not the glucometer, not the injections, not the doctors who may or may not get it. Me. Which is why I think complaining is sometimes OK. Not ALL THE TIME of course. But some of the time, for me, I just have to acknowledge how I feel, accept it, and move on.

I am nearing on 27 years old now, 18 of them with type one diabetes. I still hate it. I still wish I was free of this disease. I still fear loosing a limb to this disease. I still hate it when my actions are attributed to my disease and not just me. Like when I am upset at something, if anyone asks me to test my bloodsugar I will pretty much start yelling. That my disease doesn't regulate my emotions. It can enhance my emotions, I will admit, but it doesn't give me the emotion simply because my bloodsugar is high or low. Thats all me.

This was a long post, sorry. I think I needed to just get that out there.


Auntly H said...

It was great meeting you, Amber!

I think you're right on with the honesty thing. And courageous.
Too often, I give the impression this is easy because I don't want my family to worry or the diabetes police to give me a lecture. But then when the ugly numbers show up or the fears get paralyzing, it can feel pretty lonely because I didn't let anybody know how hard this living with diabetes thing is.

Emily said...

Mna, life sounds tough. But it seems that you have a pretty good attitude and are dealing with it the best you can. Constantly monitoring your blood glucose is a pain but luckily there are things that can help make it better. The best glucose meter I've come across is OneTouch. These are super easy, fast, and really accurate. I hope you continue to deal with diabetes well, good luck!

Scott K. Johnson said...

Great post Amber. I've been there too. Growing up with diabetes is no easy thing. I find it hard to break free of some of the mental stuff I put on myself back then too.

James said...

This is a brutally honest post.
Thanks for posting this.
It stirred up some stuff inside that I had either willfully or unknowingly buried.
Keep your head up!