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We need to allow people to self care so you can hack your own diabetes. I wish I could buy my own life sustaining hormone that I've been using for 20 years and

We need to allow people to self care so you can hack your own diabetes. I wish I could buy my own life sustaining hormone that I've been using for 20 years and understand better than most doctors outside endocrinology.

big_chungus 7y ago
I have a friend who has to regularly go to Europe to replace her implantable pump. It's not approved in America because the bureaucrats haven't gotten around to it. So long as there's no false advertising, let people try treatments that work for them, even if there's risk. Said friend has enough money that she's okay, but most others aren't so lucky.
- StacyRoberts 7y ago
  I dated someone with an external pump. It came off one day and caused so many problems. Just slid from sitting on the couch to the floor watching tv and the cushion caught the pump and broke it off. I immediately thought that type of failure should be recoverable without a hospital visit and surgery and tried to figure out why it wasn't. My mind immediately set to making it so and was held back by the fear I could go to prison for practicing medicine without a license. "I love you. I wish I could fix you. I could fix you." "I know you could. I wish you could."
  - ntdb 7y ago
    [T1D who used an external Medtronic pump for years here] Normally that kind of failure would be quickly recoverable without a hospital visit/surgery, I’m sorry that this one was not.
  - deleted 7y ago
    [deleted]
  - ng12 7y ago
    There are some other options. I use a pump (OmniPod) that is entirely attached to my body. There's a small plastic pod that's taped to the skin and operated wirelessly. My chief complaint is that the FDA is overly restrictive. They force manufacturers to make the products expire earlier to head off concerns about them working less efficiently near the end of the cycle. Diabetes is a disease who's treatment is entirely about guesstimating but the FDA does not take that into account when approving devices.
1123581321 7y ago
I completely agree. It’s shameful that the existing open source DIY projects have to be careful about how useful they allow themselves to become. Thankfully, some of their principles have been picked up by the industry, but it’s taken too long. A lot of harm is done to diabetics by denying them better treatments and tools in the name of avoiding extreme highs and lows.
- StacyRoberts 7y ago
  What is shameful is how vigilant this community is to downvote people who want to selfcare.
  - 1123581321 7y ago
    Your comment was dead from flags. I believe it’s against the guidelines to complain about downvotes, and it also invites pile-ons.
  - vo2maxer 7y ago
    In the self-care continuum, where would you place yourself or how do you define it? I hope such insight may help in the constructive exchange of ideas valued in this forum.
    - StacyRoberts 7y ago
      I'd like the freedom to buy drugs my life depends on and measure my body fluids to insure they are correctly balanced. This community argues weed should be legal. Advocates Microdosing lsd. But not insulin. Nope. Gotta get a prescription for that.
bsder 7y ago
So, who is at fault when you die or who pays when you wind up in the hospital? This isn't theoretical--someone already wound up in the hospital "hacking their diabetes". And the FDA came down on the companies involved in manufacturing the devices--even though they had NO involvement. I'm sympathetic and recognize that modern technology could be doing MUCH more for diabetic patients. However, my measure of importance is how much money is being thrown at the problem. And there simply doesn't appear to be very much money being tossed around for a medical system that will have to go through FDA approval.
- BurningFrog 7y ago
  If you kill yourself when doing medical experiments on yourself, you are at fault. This should be obvious.
  - fzeroracer 7y ago
    Now the question is, when you kill your children or family because you're doing medical experiments to try to cure them, who's at fault? Because there are people and groups drinking bleach and treating it as a cure-all for diseases. I don't think going back to the old American Wild West of snake oil selling for diseases is a good idea.
    - StacyRoberts 7y ago
      You're allowed by law to deny them medicines that they need to live but not buy them medicines they need to live? How does that make sense?
- StacyRoberts 7y ago
  Who is at fault when you drink yourself into a coma or fall out of a tree or smoke yourself into cancer? It's ok to do those things but not try to care for yourself?

big_chungus 7y ago

I have a friend who has to regularly go to Europe to replace her implantable pump. It's not approved in America because the bureaucrats haven't gotten around to it. So long as there's no false advertising, let people try treatments that work for them, even if there's risk. Said friend has enough money that she's okay, but most others aren't so lucky.

StacyRoberts 7y ago
I dated someone with an external pump. It came off one day and caused so many problems. Just slid from sitting on the couch to the floor watching tv and the cushion caught the pump and broke it off. I immediately thought that type of failure should be recoverable without a hospital visit and surgery and tried to figure out why it wasn't. My mind immediately set to making it so and was held back by the fear I could go to prison for practicing medicine without a license. "I love you. I wish I could fix you. I could fix you." "I know you could. I wish you could."
- ntdb 7y ago
  [T1D who used an external Medtronic pump for years here] Normally that kind of failure would be quickly recoverable without a hospital visit/surgery, I’m sorry that this one was not.
- deleted 7y ago
  [deleted]
- ng12 7y ago
  There are some other options. I use a pump (OmniPod) that is entirely attached to my body. There's a small plastic pod that's taped to the skin and operated wirelessly. My chief complaint is that the FDA is overly restrictive. They force manufacturers to make the products expire earlier to head off concerns about them working less efficiently near the end of the cycle. Diabetes is a disease who's treatment is entirely about guesstimating but the FDA does not take that into account when approving devices.

1123581321 7y ago

I completely agree. It’s shameful that the existing open source DIY projects have to be careful about how useful they allow themselves to become. Thankfully, some of their principles have been picked up by the industry, but it’s taken too long. A lot of harm is done to diabetics by denying them better treatments and tools in the name of avoiding extreme highs and lows.

StacyRoberts 7y ago
What is shameful is how vigilant this community is to downvote people who want to selfcare.
- 1123581321 7y ago
  Your comment was dead from flags. I believe it’s against the guidelines to complain about downvotes, and it also invites pile-ons.
- vo2maxer 7y ago
  In the self-care continuum, where would you place yourself or how do you define it? I hope such insight may help in the constructive exchange of ideas valued in this forum.
  - StacyRoberts 7y ago
    I'd like the freedom to buy drugs my life depends on and measure my body fluids to insure they are correctly balanced. This community argues weed should be legal. Advocates Microdosing lsd. But not insulin. Nope. Gotta get a prescription for that.

bsder 7y ago

So, who is at fault when you die or who pays when you wind up in the hospital? This isn't theoretical--someone already wound up in the hospital "hacking their diabetes". And the FDA came down on the companies involved in manufacturing the devices--even though they had NO involvement. I'm sympathetic and recognize that modern technology could be doing MUCH more for diabetic patients. However, my measure of importance is how much money is being thrown at the problem. And there simply doesn't appear to be very much money being tossed around for a medical system that will have to go through FDA approval.

BurningFrog 7y ago
If you kill yourself when doing medical experiments on yourself, you are at fault. This should be obvious.
- fzeroracer 7y ago
  Now the question is, when you kill your children or family because you're doing medical experiments to try to cure them, who's at fault? Because there are people and groups drinking bleach and treating it as a cure-all for diseases. I don't think going back to the old American Wild West of snake oil selling for diseases is a good idea.
  - StacyRoberts 7y ago
    You're allowed by law to deny them medicines that they need to live but not buy them medicines they need to live? How does that make sense?
StacyRoberts 7y ago
Who is at fault when you drink yourself into a coma or fall out of a tree or smoke yourself into cancer? It's ok to do those things but not try to care for yourself?