Since it is National Diabetes Awareness Month, I thought I would take a little bit of time and a few hundred words to share my thoughts on this weird year and generally my thoughts on being a diabetic. I will start with some things you may not know:
- Insulin is EXPENSIVE (by expensive I mean $1600 a month without insurance). Okay, you probably know that, BUT did you know that an insulin pump costs ~$7500? That is an “every 3 years” cost and is always a deductible item. The supplies for connecting that thing to my body cost roughly $200 a month. Then there is my CGM (continuous glucose monitoring) system. Dexcom is $85 a month (under pharmacy benefits) for sensors and another $95 every 3 months for the transmitter. You might ask “Do you need all that?” The simple answer is my last A1C (3 month average) was a 6.6 or roughly a 126mg/dL. The normal range for someone who is not diabetic is something like 80-110/120mg/dL (this number changes sometimes, like blood pressure). So, with all this cost/time/effort and care, I am still not “normal”. I am above “pre-diabetic” ranges. The goal, as always is sub-6. Sub-7 is great! But could be better, always.
- After so much time of using a pump, your injection sites grow scar tissue. So those tubing/injector kits that cost about $15 each don’t always inject correctly, or absorption rates aren’t as good. So you have a day where I sit at 200mg/dL feeling slightly tired with a higher than normal blood pressure and a general warm feeling until I get a good spot or I have to take a shot to push it down.
- Your blood sugar goes up WAY WAY faster than it comes back down. So, 30 minutes of forgetting to bolus (take more insulin for a meal) or an injection spot that doesn’t absorb can push your blood sugar level to 350mg/dL. It could then take 8 hours (like it did last night) to get it under 200mg/dL.
- Diabetes is considered a pre-existing illness. One reason the ACA should stick around, in my opinion, is that it guarantees coverage should I ever lose my job or not have insurance for some reason or another and must find new insurance. Imagine all that cost from number 1 for someone who does not have the best job or even A job but gets some sort of coverage. Then they are told they may or may not ever get coverage for a life-altering, debilitating disability. Too many have already died rationing insulin. Too many have died because they can’t get insulin at all! Not to make this political, but if your vote for anyone is to take away coverage and guarantees of coverage for the millions upon millions who deal with diabetes every day, I worry about your lack of empathy.
- Diabetes is hard work. It is tiring. It is wearing. It is a distinct cause for depression in millions of lives and especially in mine. There are days I want to just quit and let it take me. I fight to be a good diabetic and my levels just WILL NOT go down. I have cried. I have gotten angry. I have screamed. I have considered ending it all. 34 years in, I have never had a chance to beat this disease and probably will die with it and in some way because of it. Those are the cold hard facts I wake up with every day. My mood is altered regularly because of it. My energy levels are always tied to my blood glucose level. I have passed out in public twice now. Hospitalized twice. Talk to my doctor’s office regularly about the different medications I must take to accompany my diabetic body because diabetes is not the killer. Heart attacks are. Liver and kidney failure are. Strokes are. I could go blind. I could lose my feet and legs. Some days I feel like I have already lost my mind.
I am positive there is no bright side to interject here. Diabetes sucks and it is hell.
I am thankful I have a good job with good insurance. I am thankful I have a spouse who cares about my well-being and supports my life as a diabetic. I am thankful that the industry is making it easier to care for myself, even if it is not affordable for most right now. I am thankful that there are people out there who are far smarter and more powerful than I am that want to make a change for diabetics. I hope we let them succeed.
If you ever want to see what my blood sugar is: https://ernpacnightscout.herokuapp.com