Type 1 diabetes (warning - personal as hell)

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Postby white_hotel » Wed May 11, 2016 5:35 pm

OK, so, one reason I've not been around is that my brother, who's the only member of my family who's not completely worthless, has been really sick. He has type 1 diabetes, which was diagnosed when he was 19, and he's now 40. He has 2 young kids, and he and his girl live far from any family support. They work opposite shifts - she takes care of the kids during the day while he works a short shift, then he comes home early, feeds and puts the kids to bed, then does a couple of hours (usually more like 3-4) working from home while she works a night shift till 1am. Unsurprisingly., they're both exhausted and my brother hasn't been managing his insulin very well. He does calculate his dose, but not always correctly, and he has tended to overcompensate and run too much insulin.

Over the past few weeks he's been having more and more frequent hypoglycemic seizures. Always at night, always around the same time. Usually the liver produces glucamen to try and regulate a hypo and prevent a crash, but his hasn't been - hence the seizures. Any one could kill him - microlesions, hypoxia, stroke. He had 6 seizures in 10 days and then went to hospital to get checked out; they adjusted his insulin dose, and he stopped fitting, for a couple of weeks. Last weekend I visited him and, having had a couple of glasses of wine, he seized again. IT's looking more and more like his liver function is seriously impaired. I can't even tell you what my brother means to me - not only is he my brother and we've been through the war of my family together, but he's also the kindest, sweetest man I know. He's my friend as well as my brother and I can't stand to see him suffer, worn down by work and parenting.

Any other T1 diabetics on here managing seizures? Anyone with anything hopeful to say? I feel like shit. I just want him to be okay.
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Postby Phara » Wed May 11, 2016 7:09 pm

ugh oh god hon. I don't know anything about it but if he ever needs a place where he can just forget shit for a minute, this has been a great distraction for a ton of members facing illness, death, divorce, etc...

he's in my thoughts, as are you.

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Postby Feydakin » Wed May 11, 2016 7:29 pm

Not really familiar with diabetes but here for moral support and sending good vibes your way regardless...
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Postby cerrodepedro » Wed May 11, 2016 8:50 pm

Holy no. I'm sorry this is happening, and I'm betting that much apart from the threat to his life, he's even more upset/angry/grumpy at the fact that it just impairs him from enjoying day-to-day activities without that creeping worry.

And speaking to the whole child care thing, the lack of team parenting instead of "either parent A or parent B" wears on everyone. It makes both parents effectively single. I HATE it, because it turns into a tit for tat situation whenever folks' strength and constitutions physically and emotionally get to a weak point, and sometimes you just don't have the fucking stamina to care for children and deal with household tasks simultaneously.

The only thing I can say is that for the person with chronic illnesses or disorders, it helps to have someone come up and kick you in the pants to get proactive with bugging the hell out of the medical behemoth.

Assuming you are in the USA, the whole thing is set up to work on capitalist principles. It's more profitable just to issue that insulin at artificially elevated prices and have the insurance companies dicker on a price just a tad lower than the premium amount than it is to go get a holistic (not speaking to the ableist granola types but to the literal meaning of the word) evaluation that involves multiple visits in order to get stable. It took me SO MUCH effort just to get a fucking Muscular Dystrophy diagnosis because testing is not really profitable to insurance companies. Hell, there isn't an in-network neuromuscular specialist within 100 miles of me, so we had to opt for the even less profitable network GAP exception just for me to start the diagnostic process, and we're not talking bullshit "first-world" illnesses. We're talking knowledge that can dramatically, hugely improve quality of life.

For Type 1 Diabetes, I have to presume a similar thing is in place. They want to just plug him into that little machine an collect the money for insulin periodically. They don't want to check out the rest of his body to see what's happening to his vital organs. If he wants to get that, he has to push, even though it's not fair. You just want to go about your daily life and not have to exert tons of effort just for that privilege.

For me the motivation to get a decent looking-at took falling down while carrying my then 1.5-year-old and letting his little forehead tap the concrete to get off my ass and inconvenience some doctors and nurses. Not sure what it will take for your brother, but I think something that isn't horrible (like my example) can be just that. Maybe it's his wife or a close friend or you saying "OKAY GET IN THE CAR ON YOUR DAY OFF THERE IS BABYSITTING AND I MADE A SERIES OF APPOINTMENTS FOR YOU AND YOUR WIFE SORTED THE MEDICAL PRIVACY AND INSURANCE SHIT AND IF YOU COMPLY YOUR WIFE HAS PROMISED SEXUAL FAVORS" sort of situation. And maybe he has shit insurance or none, in which case I am so sorry and feel free to unload about that, too.

Anyways, here's some empathy. It sucks so hard to have someone close to you have their life threatened because of things that are partially out of their control. Been on both ends of this. This community is really fucking resourceful. Don't shy away from presenting us a problem. Worst case scenario we say "okay this is beyond us but we care about you."
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Postby ink » Wed May 11, 2016 9:44 pm

cerrodepedro wrote:
Anyways, here's some empathy. It sucks so hard to have someone close to you have their life threatened because of things that are partially out of their control. Been on both ends of this. This community is really fucking resourceful. Don't shy away from presenting us a problem. Worst case scenario we say "okay this is beyond us but we care about you."

i hope and pray everything works out for your brother and word to everything here, but echo to this ^^^ because it needs some reverb
we are, what we allow to occupy us..

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Postby Philly » Thu May 12, 2016 1:25 pm

My dad was a diabetic and terrible at managing it. I tried my best to help him but he was so stubborn. Now they have apps like glucose buddy. Try suggesting one. I know you can go to the app store and search diabetes apps. I started using glucose buddy when my dog was diagnosed and being in an extremely similar home situation l can say its helped me keep track easily. There are several apps so he might have to try a few before he finds one that works. Some just log doses some help you calculate doses. It depends on what he needs. I hope I was a teeny bit helpful. I wish everyone the best
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