So today’s post has been in process for a while. It is something that while is not all that revealing about me, it is more so a warning (maybe) or explanation about some of my quirks. About a month and a half ago I had posted my recent a1c, it was a great number and I was happy with it. I mean it is a great number on the surface, but there is a tale here. Why? Well otherwise the blog post would end right here, duh!!!
This story starts with a conversation with my friend J who is different than my friend Jess. Granted both of them are similar in what was said to me or hinted at about my a1c. First of all Jess blogged about her numbers and struggles with her diabetes. The thing that got me was the comment that she said, mind you not like eewww, why the heck did she say that sort of thing, but just got me. “I’m thrilled for Brian and his A1c, but I don’t think I’ll ever see mine there. I don’t want it there. My diabetes is different than Brian’s. Our A1c goals are not going to be the same. Your diabetes may vary.” This echoed the comment my friend J and I were having. (She is not a blogger and while she is an active advocate, why throw the name around without asking permission and stuff?) We were talking about her struggles with diabetes and some of her spikes and the like. We spoke about how she was planning on redoing all of her basals with her doctors help of course. We joked about how her appointments are about an hour a pop where as I am in and out in 5 minutes so to speak. We speak openly about our struggles and stuff. She knows my number, she knows more about me than most, but not everything. But she made pretty much the same comment as Jess. “I don’t know how you do it, I am a little envious, I don’t think I can ever get my numbers as low as you do.” You know what? Good for you. Your numbers do not have to be mine. Your numbers can be anything. They are only numbers.
Yes my a1c’s are great. But they do not show the real story. The struggles I have with trying to stay low, not hypo low, and not high. Not wanting to black out and still not have to eat anything. I know exactly why I am completely hypo unaware. It’s my own damn fault. Years ago, let’s say 17 years ago as sometime around now is when I celebrate my diaversary. I can remember my doctor and everyone telling me the horror stories of uncontrolled highs, loss of sight, loss of limb, loss of everything. You know the typical confused misinformation from the passerby and the uncomprehending thought process of a 13 year old kid. MAKE SURE YOUR NUMBERS ARE NOT HIGH OR YOU DIE, is basically the message I got. So I was terrified and like the good little lemming that is what I did.
I carb counted the shit out of those #complexcrabs. Oh wait, no I didn’t I was on that stupid food exchange thing. Still not sure how ketchup is a free food…. Anyway, I did my best, I looked at exchanges, I took insulin when I was supposed to, I ALWAYS made sure my numbers were low. It was fine or so I thought. Dr.’s came and went insulin levels rose (the usage of insulin was never really explained to me, the R and Humalog and Novolog what they really did). I went into auto pilot more or less in college. I never tested, I had tons of strips and lancets (just got rid of most of those things a few months ago). My a1c was fine always in the 5.9 or below range, so why worry about what the actual numbers were. My daily morning dosage of 25 units of NPH and 20 units of Humalog or maybe it was vice versa seemed to be doing the trick…. Yes, what I said was right. The thing is I never knew really what the R and Humalog were doing. Yes they were short term, but I think in my head I thought it was like short term over a period of time not an hour and BOOM, here I am.
I was stupid, but my doctor never corrected anything. My “numbers” in my log book were fine, why would I make those up? My a1c was great so to quote my doctor when we talked about Lantus at one point. “Don’t try to fix what isn’t broke.” Ass…. well no not really. The ass was me. Because I rarely tested and ate happily, I never knew the multiple times I was low during the day (pretty much everyday) because I was functioning. There were no “harmful” side effects. We’ll get to that in a bit. Sometimes I went low, sometimes I caught it. By this time I was working in the bank and periodically around 11, you know when my 25 units of Humalog peaked, my work ethic and efforts tanked. I was low, I didn’t know. I didn’t treat. I just wandered throughout the day lost. I once shorted my drawer $200 due to a low. But thankfully post lunch and thought processes I was able to figure out what the heck I did. However, sometimes I just had issues. And I never said a word to my doctor. Why would I? I mean I was doing okay.
I could have kept this routine up for a long time. I went into the seminary and managed okay. I did the same routine, it only bit me in the ass once or twice with lows and delayed masses and eating. But again nothing was wrong…. or so I thought. I survived, it was good. Well we can only chance things for so long. I mean 13 years without any really major issues. Well I did end up in the hospital once in college because of Hypoglycemia and the paramedics and my roommate bailed me out a few times. But that was college, I didn’t eat enough food.
Did I mention I wasn’t testing. LIKE EVER. Like in the morning when I drove after shooting up and barely eating. Did I mention that when I am low, even when I don’t know it and feel the urge that I should be eating something, I didn’t. Maybe you know where this story is going with a buildup like this. It was early November of 2009. The seminary community had a morning mass at a local church. It was duty to get the supplies there to setup for the mass. That was easy. That was done. Mass happened. Easy…. Done. Cleaned up. Easy…. done. Missed the food. Oh that’s okay (they had bagels, but I don’t eat those things, even when I might be low and finicky about food). I had a 12 minute car ride back to the seminary. I got into the car with another seminarian and started driving. I mean I knew where I was going, but I missed a turn. After that, I wish I could say what happened. I remember certain parts of the car ride. Driving around lost. I remember trying to get back to where I needed to go. After that I have no idea. Apparently at some point I hit a curb and sign. I flattened both the tires on my passenger side and took the mirror off. Yet I don’t remember that. What I remember is coming alert as a police officer is yelling at me. I can’t blame him, for all intensive purposes, I was a drunk driver. Thankfully, I was able to get out that I was a diabetic. Ambulances were called, car towed, my poor passenger was terrified. He never really told me what happened and damned if I know either. I have flashes but nothing makes sense.
That day, the following day, every day after I started to think about things and realized how lucky I was to not be dead. How lucky I was no one was hurt, especially my passenger. How lucky I was that …. I was stupid. I was an idiot. I was not taking care of myself at all. It was soon there after that a friend of mine introduced me to his friend J, who has had type one since she was 9 or 6. Way younger than me. J had a pump and was someone that I connected with. We talked off and on about different things. Never really d-related but those questions were always in my head. I now had person to talk to. It was at that time I found Juvenation as well, when it was still in its infancy. That was a good place for me to talk, make friends Kim, C, and Jess. I was able to open up. I was able to move on. I was able to learn from my stupidity over the past 13 years.
Also though I started to make changes. I knew something had to be done. I was a little more alert of my testing, but also making sure all things were functioning when I was out and about. I started to wonder about pumps and cgm’s and all of this “new” technology that I was hearing about. (I know it’s not new, but well yeah.) I asked my friend J so many questions about her pump, what was needed, and so on and so forth. I made the decision to switch, for a fresh start. My then Doctor was leaving the practice to go off and teach so I had to meet with a new Endocrinologist. I can remember walking into the office that day and talking about the pump, what I wanted/needed to do. I didn’t talk to her about my past, because that was behind me. I was all about my future, my present, what I needed to do so that what happened will not happen again.
My doctor was great. We did everything that was necessary. I had meet ups with the nurse practitioner about pumps and what was out there. We filled out the paperwork, got the insurance approval, etc…. I went onto a pump. I learned about #complexcrabs and crabs in general. I learned about Basal insulin and Bolus. I learned why 25 f-ing units of Humalog in the morning was killing me and giving me lows. I know why I am hypo unaware. Yet I still terrified of those high’s and I still try my hardest to not let them happen or attack me. 17 years of misguided information is hard to undo. I want to stay below 130 when I can. I hate it when I am not. I want to be at 99 as much as possible, not 100. I still go low, yes because I may swag or over bolus to get below my magic number.
Years of brainwashing are hard to undo. But it is something that I am working on. I have Blue my pump. I have Beepy McBeeprson who helps me out. Sometimes I may still ignore them. Sometimes I may go low. Sometimes I may be wandering around Disney at 47 and be 98% with it. Yet, I am more alert. I test often. I change my lancet more…. HAHAHA. No seriously we need to change our lancets more. I am not perfect. Yes my 5.5 a1c is awesome. It is great. Yet it does not tell the whole story of who I am. There are many struggles I still face. Mental blocks I need to fix and correct. I am getting there though. Our Diabetes may vary. Mine definitely does. I am not perfect, I am screwed up big time. I am grateful that I have managed to keep myself alive. Going low is just as bad as being high. The consequences might not be lost vision, limbs, or anything like that. But loss of life, going low at night, that is not the way either.
I urge you to do what is right. If you are stuck in a rut seek help. Talk to someone, anyone. Send messages, ask questions. If you are confused if your dosage of insulin is made up by you for so many years. Talk to your doctor. We can do many things. But in this seek help. Find that support you need. Reach out, the DOC myself are here to help you. We can listen and try. We can feed you pumpkin pie (only when low).
*Disclaimer* I feel I should post a small clarification not really a disclaimer. Make sure you know what your numbers are while driving. Don’t be stupid about it. Don’t take risks or chances. You need to do what is right, what is healthy, but what is not stupid. If you are low DON’T drive. Luck won’t get you from point a to point b all the time. Be smart. TEST!!