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  (#1 (permalink)) Old
PoeticJessie Offline
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Scared I Won - August 16th 2019, 11:28 PM

I am diabetic.

I have a very rare form of monogenic diabetes called MODY-5. It's so rare so that only about 3,000 or less people in the United States have this disease.

I'm also hypo and hyper unaware, which means that I don't feel my highs or lows. My blood sugar can be dangerously high or dangerously low, and I will feel perfectly fine, which is absolutely terrifying. I could pass out at any minute from low blood sugar, and I will have no warning. I can be on the verge of passing out and feel 100% fine.

Anyway, there is a device called Dexcom G6. It's a continuous glucose monitor. It would be attached to my skin and would automatically read my blood glucose levels every five minutes and then send those results to my phone or a receiver. If my blood glucose were to go higher or lower than my target range, an alarm would go off, alerting me to the out-of-range glucose. This system would be perfect for me, especially at night time, when I tend to drop dangerously low. My insurance, however, will NOT give me a prior authorization for the Dexcom G6 system. They claim that I "don't need" a true CGM (continuous glucose monitor) because I'm not Type 1. They're saying that only Type 1 Diabetics actually need a CGM, and because I have MODY I don't need one.

Right now, my blood sugar is dropping to below 60mg/dL most nights. I get up every single night at 3:00 to check my blood glucose because I'm terrified I won't wake up if I don't correct my lows. Nine out of ten nights, my blood sugar is below 70 mg/dL (normal range is 80-120) and I need to correct.

Every night I struggle to fall asleep because I'm terrified that I won't wake up at all. I have a disease that could kill me. If my body doesn't do a glucose dump, I WILL die. My body's ability to release glucose into the bloodstream is hindered by my diabetes. I live on a fine line between life and death because of this disease, and it is really affecting my mental health. I go to bed terrified that I won't wake up, because I know that it is a real possibility that I actually won't won't wake up. I don't sleep well, in part because I get up at 3:00 AM every day to check my blood sugar, and in part because I'm just so scared that I won't wake up. I have a one-year-old son. I can't leave him. I can't die right now. I'm twenty-one years old. I'm in college. I CAN'T DIE, RIGHT NOW!!!!!

How do I deal with this fear? How do I come to terms with the fact that I could die every night? How do I live like this?

I've tried to get a Dexcom, which would wake me up when I dropped below 80, and would keep me alive, but I cannot afford to buy it out of pocket, and my insurance won't cover it.

How do I come to terms with living on Death's Doorstep?

Last edited by PoeticJessie; August 16th 2019 at 11:47 PM. Reason: published too early.
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  (#2 (permalink)) Old
Kate* Offline
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Re: Scared I Won - August 17th 2019, 02:47 AM

See if your doctor can appeal to your insurance company. Someone I know got approved for it because blood sugar issues due to cystic fibrosis. But,she had to have the doctor provide information first because she doesn't have type 1.

Until then, the best thing to do is wake up every few hours to check and manage and then go back to sleep. Unless someone lives with you and is willing to get up every few hours and check for you. if you're consistently going high or low at certain times, you might be able to preemptively manage.

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Dusk. Offline
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Re: Scared I Won - August 17th 2019, 06:58 AM

Hi there,

I agree with Katie. You can see if your doctor will help you with getting the device. The insurance company needs to understand how serious your condition is and how it impacts your day to day life.

I can't imagine how terrified you are right now and nothing I say can make you feel better but if there is anything you need, my inbox is always open.

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