Tdarcos wrote: Wed Jun 03, 2020 2:26 am
Uh huh, but I didn't have it back when I was in a wheelchair. This is the result of an opportunistic infection caused because I wasn't caring about the wound on my foot
What put you in the wheelchair, then? You may have been undiagnosed at that point, or ignoring your doctor. In any case diabetes causes hyperglycemia which leads to all kind of fun things like ketoacidosis and peripheral neuropathy. That last one means you lose sensation in your extremities. It starts with your feet and toes, moves into your hands, and eventually your legs and even arms. It means you lose your sense of touch as the nerves die. This is why it's critical for diabetics to examine their feet (or have them examined) constantly, for this exact reason: if you cut or damage your foot or leg and don't feel it, you never do anything about it, and it gets infected, and the next thing you know you end up with a massive infection and eventual amputation like you did. Many, many diabetics end up with amputated feet and legs for this reason. I don't know what your living situation was at the time or if you had anyone to help you. I agree it can be tough for obese people to carefully examine our feet. But be assured your infection was indirectly caused by diabetes. Normal people don't get infections like that, or if they do, they notice right away and get them taken care of before amputation is necessary.
Tdarcos wrote: Wed Jun 03, 2020 2:26 amwhich would eventually heal (it did, a few months later, and if I hadn't had an infection to fight off first, might have been faster.)
Diabetes causes very poor blood circulation in extremities (which causes the aforementioned neuropathy). That affects healing rate. It doesn't mean wounds on your hands and feet
never heal, not at first, but they take much longer to do so, and get slower and slower to heal as things get worse. Even though I manage my diabetes much better than you do, I'm still not 100% perfect, and I have a little bit of tingling and numbness in my feet and toes because of neuropathy. Luckily I still have some feeling, and have my wife to help me keep an eye out for wounds.
Tdarcos wrote: Wed Jun 03, 2020 2:26 am
Finsternis wrote: Tue Jun 02, 2020 11:18 amYour diabetes is killing you in a lot of different ways. On the one hand, I doubt that is news to you. On the other hand, I'm unsure exactly how much you know about all this, how much you know about the connections between the conditions, and how much you
want to know. And, frankly, how much you care.
I am probably to some extent, aware of what is going on, even if I don't admit it to myself. As for caring, I don't know if I do.
My strong suggestion is now that you're fully aware of this connection you decide how badly you want to live and in what condition.
Tdarcos wrote: Tue Jun 02, 2020 10:24 am
Well, you can tell me, but I don't know that it makes much difference. You may hae decreased mobility but at least you
have mobility. I've got
nothing;
Yes yes, we know that, and I'm sorry. I definitely sucks. As I said, you are far more disabled than me. It has to be really depressing.
If you like, I will buy you
one of these I've found them to be indispensable. I think it makes life easier for people who have mobility issues. I can walk, but I can't bend down much or reach far.
Tdarcos wrote: Tue Jun 02, 2020 10:24 am
i can't even take a
shit without having to ask someone to change the diaper and wipe my ass! I get aides who sometimes tell me when rolling me on my side to hold on to something when there's nothing to hold on to [...]
Sure sounds like it's awful. Again, I hate to rub your nose in it, but in all seriousness, you need to decide right away whether you want to slide downhill into misery and death or do the work necessary to attempt to improve your situation as much as you can. You're never gonna run and jump again, Paul, sorry. You know that. And I have no idea how much improvement you can make - that's up to nature and you. It's certainly well within the realm of possibility that you could get well enough to do a lot more things for yourself and regain some independence.
Tdarcos wrote: Tue Jun 02, 2020 10:24 am
Type II, probably over 15 years ago, since I knew it at some point when I could walk, so it's a least that far back. Almost certainly before 2000, so make that over 20 years ago.
Then you absolutely lost your leg to complications from diabetes, no doubt about it. The infection was caused by a wound which you did not attend to because you either felt it but did nothing or didn't feel it at all. As a diabetic, you need to be hyper-aware of even the tiniest wounds on you.
Tdarcos wrote: Tue Jun 02, 2020 10:24 amThis place stopped bothering to check my glucose and I don't know why, and I don't think they've ever checked my A1C.
Hmmmm. <Angry face.> That is inexcusable. If it's true, you may have a case for malpractice. Then again, they can certainly defend themselves by pointing to a mountain of empty Starburst bags
Tdarcos wrote: Tue Jun 02, 2020 10:24 amCan't tell if they have me on a restricted diet, but they do give me weird selections in food, like at dinner last night I was offered potato salad with mashed potaoes (and nothing to put on them), black beans, milk, hot chocolate and some dessert. I might have had something else with it, I wasn't paying too much attention. How exactly am I to eat bare, unflavored mashed potatoes?
Well, that's a terrible diet for a diabetic in any case. You shouldn't be eating mashed potatoes at all.
Tdarcos wrote: Tue Jun 02, 2020 10:24 amOh yeah, no salt, of course, and while they used tp give me Mrs. Dash seasoning, I don't get that any more.
Spices are cheap and something anyone can here can send you. I suggest you ask for those in place of candy.
Tdarcos wrote: Tue Jun 02, 2020 10:24 amI sometimes eat what they give me.
And the other times you don't eat at all, or you eat something else?
Tdarcos wrote: Tue Jun 02, 2020 10:24 amSometimes it's things I can't stand (like, as I discovered, Brussels sprouts) don't like (yams) or would be okay
Yeah, I hate Burssels sprouts too, and yams, and beets. Have you tried talking to them about replacements?
Tdarcos wrote: Tue Jun 02, 2020 10:24 am
egg white, but they're often scrambled which is okay, but at times they come in a "foamed " method,
It's known as a soufflé.
Tdarcos wrote: Tue Jun 02, 2020 10:24 am
Unlikely, I drink plenty of water. A while back, I got criticized because I wasn't drinking enough, and they had to insert an IV and give me fluids. I do
not want that to happen again.
Diuretics aren't about how much you drink, it's about how much comes out. I suspect you are very thirsty all the time and even drinking a lot doesn't quench your thirst much. Ref "polydipsia" and "polyurea".
Tdarcos wrote: Tue Jun 02, 2020 10:24 amtHEN THERE ARE THE TIMES i WRITE A SENTENCE WHERE i WAS TOO BUSY WATCHING THE KEYBOARD
I too am a rotten typist who over the years has developed a method which is extremely fast but extremely error prone even though I look at the keyboard. So my extreme speed is effectively halved because I have to do back and do so much correcting. I tried to learn touch typing but after 40 years of doing it this way the muscle memory is just too hard to break. I have a new backlit keyboard which I like but the keys are a bit too small and I'm constantly hitting shift-lock and doing the same as you describe above.
Paul, it's all up to you. All these decisions are yours. All I wanted to do was make sure you were fully cognizant of the deadly seriousness of your situation. Sometimes we get so used to shining things on and ignoring them that we never get around to facing things. It would be sad to me if you just slid into misery and death without ever having made a conscious choice to do so. Though, as the poet says, "if you choose not to decide, you still have made a choice."
So your choice is clear. Either A) decide you don't care, that you'd rather die, and figure out the least painful way to do that. Pros: you don't have to do anything except suffer misery. Cons: give up years of your life. OR B) decide to live. Pros: you get to live longer and probably gain back some independence and possibly even some hope and purpose. Cons: it's a lot of work. You have to not give up, fight back, take control, do a lot of work and other things that are no fun, sacrifice, and so on. Many of those things are tough, or at least I find them so.
And you know, Paul, you are probably thinking I'm trying to shame you towards option B. And yes, it's what I have picked for myself. But if you pick option A, I personally would not judge you. Despite what "feel-good" Hollywood movies and After-School Specials want you to think, not everyone is a hero. Some of us just don't have that "gumption" and "drive" and "discipline" that are so highly praised. Some of us have Saint Salieri as our patron. Not everyone can be a hero. Lots and lots of people with problems never overcome them. We aren't strong enough. And that's OK too. Me, I'm still figuring out whether I have enough willpower to swing my course back to the good. I've managed to stop my slide into the depths, but pulling myself back up is even harder. All i can say is that I decided I'd rather go down trying instead of surrendering.
If you choose to not give up, I can give you some tips. You're already made a detailed inventory of things you can't do and things that suck about your life. Now make an inventory of what advantages and skills you have. None of them are physical, check. But compared to many people, you have lots of things you can use. You are intelligent. You write pretty well. You have communication with the outside world. Thanks to the internet, just those three things can be leveraged into getting yourself more assets. If you try to do this and find yourself concentrating on how hopeless it is and how it will never work, you're doing it wrong. Pretend that Ben or Jonesy or I have pout forth the proposition here that it is impossible for you to do anything to improve your situation. Try to prove us wrong. Remember what Tich Nhat Hahn (I think) said: "If you are depressed, you are living in the past. If you are anxious, you are thinking about the future,. If you are peaceful, you are thinking about the present." Or, more succinctly, what someone else said: "Whether you think you can or think you can't - you are right." You're gonna have to do it yourself,but it is possible.
The following goes for anyone with any serious medical condition that they want too be sure gets the best care, not just Paul.
Step 1) Learn everything you can about your condition. Take some online classes about diabetes and its care. Read some books and many web sites - about the condition, how it works, about the chemistry, the side effects - the works. Maker yourself an expert on it. There is endless information available. Don't just read one or two sources and feel you're done. Get so you can have an intelligent discussion about it with an M.D. Know what blood glucose is, how it works, what insulin is and how that works too, how they interact, what different medications are and how they work, your blood chemistry, etc. This is one of those places where
knowledge is power. If you talk intelligently about your condition and make good points, people will respect you and NOT treat you like some amateur who has read a few quack article on "Dr. Google."
Step 2) Do the things you can do all by yourself to improve your health. In your case, this largely means STAY AWAY FROM CARBS OF ANY KIND, especially refined sugar. Obviously that means NO candy, NO soda, pasta, rice, or white bread. Think of it as poison to you, because it is. Try to keep your carbs below 60 grams per day - lower if you can. Every carb you don't eat is a victory.
Step 3) Using your knowledge of your condition,
gather some data. In your case specifically, this means: take your blood glucose several times a day and record it somewhere safe (i.e., in a nice neat table in a spreadsheet or phone app, not on the back of a napkin). Keep a food diary of what you ate each day, what your BG reading was before each meal and 2 hours after. You can get a very good BG meter for cheap on Amazon. You only need to buy one or two containers of test strips because the goal is to get them to pay. You need data that you can wave at them, not just your opinion.
Step 3) LEARN TO ADVOCATE FOR YOURSELF. Our healthcare system has a lot of problems, and one of the biggest is that it;s test-oriented. The system really loves tests. They are discrete money units. They are easy to put a price on and to bill for. So they will give you lots of them - as long as someone will pay for them. The problem is, they often 1) don't even give you a copy of the results, and 2) the doctor who gets them basically "eats them and says nothing". A good doctor may give you a little advice, but beyond maybe writing you a prescription for something, few doctors will point you in the direction of what you should do next. They mostly just send you on your way and expect you to figure out "what next"?
SO: DO THAT. First, you have to get good at the skill of
firm but polite assertiveness. That means:
Ask nicely, but don't take no for an answer. Sometimes you have to push people a little bit,. Sometimes you have to get them to do things they won't normally do. Sometimes you have to pester them a little bit, or call them several times. This is most definitely a case of the Squeaky Wheel getting the grease. The people who get left behind, stuck in the system, are the ones who pay no attention and are apathetic. Don't be one. If someone says something can't be done, ask them how it could be. Ask what might make it possible. Ask if an exception can be made. Find the cracks and the loopholes and the nice people who are willing to do more for someone who is nice to them, someone who asks for their help in a kind way. Ask what to do next. How to follow up. What's next, etc. Believe me, in any system, but especially the US health care system, pro-active advocacy is the only way to survive the complex problems. If there's some kind of administrative issue, find out how to fix it and either fix it yourself or get ask someone nicely to do it over and over until they do. Using these kind of tactics, I recently obtained $18,000 worth of medication for $20. It works if you are clever and persistent.
Step 4) Now that you understand assertiveness and you have a bunch of data, start your campaign for better care. Be as nice as you can without being a pushover. As politely. Use reason. Ask for reasonable things- a blood glucometer, free test strips, and monthly (or more) A1C tests. Ask to see a diabetes specialist right away and get on the proper medications, including both quick-acting and long-basting (basal) insulin. Ask for a very low-carb / high fat diet. Don't let them rest until you have those things, even if it is only to get you to shut up about it already. Once you have those things, become obsessive about them. Take your BG and insuin 15 minutes before every meal and test again two hours after. Write everything down in meticulous detail.
Step 5) If you can do those things A LOT, religiously, you should see a lot of improvement, not just in your blood sugars and A1C, but also in your general condition. You won't jump out of bed and start dancing around, but I wouldn't be surprised if your pain was less, your mobility and flexibility were better, your tingling and numbness decreased, you blood pressure and other stats improved, and so on. Diabetes affects every single part of your body.
IF, after every possible attempt to work things out nicely, after being kind and polite and patient and understanding, you they STILL refuse to give you proper care, then it's time to gently start to hint at the big guns. You are a diabetic suffering form a very advanced stage. Failiung to treat you properly is basically a crime, and it's not as if you are asking for expensive surgery. Meters, test strips, A1C tests, and proper meals are not expensive. Talk to the hospital administrator or ombudsman if you can. Otherwise, start casually dropping words like "malpractice" and "investigation" in a sad, mournful way as if you really don't want to do those things but they leave you no choice.
Those are the basic steps. Try those and see how they work. If you encounter issues, say so here and we can all try to work them out.
Be well. "Choose life."
[quote=Tdarcos post_id=109978 time=1591176387 user_id=829]
Uh huh, but I didn't have it back when I was in a wheelchair. This is the result of an opportunistic infection caused because I wasn't caring about the wound on my foot[/quote]
What put you in the wheelchair, then? You may have been undiagnosed at that point, or ignoring your doctor. In any case diabetes causes hyperglycemia which leads to all kind of fun things like ketoacidosis and peripheral neuropathy. That last one means you lose sensation in your extremities. It starts with your feet and toes, moves into your hands, and eventually your legs and even arms. It means you lose your sense of touch as the nerves die. This is why it's critical for diabetics to examine their feet (or have them examined) constantly, for this exact reason: if you cut or damage your foot or leg and don't feel it, you never do anything about it, and it gets infected, and the next thing you know you end up with a massive infection and eventual amputation like you did. Many, many diabetics end up with amputated feet and legs for this reason. I don't know what your living situation was at the time or if you had anyone to help you. I agree it can be tough for obese people to carefully examine our feet. But be assured your infection was indirectly caused by diabetes. Normal people don't get infections like that, or if they do, they notice right away and get them taken care of before amputation is necessary.
[quote=Tdarcos post_id=109978 time=1591176387 user_id=829]which would eventually heal (it did, a few months later, and if I hadn't had an infection to fight off first, might have been faster.)[/quote]
Diabetes causes very poor blood circulation in extremities (which causes the aforementioned neuropathy). That affects healing rate. It doesn't mean wounds on your hands and feet [i][u]never[/u][/i] heal, not at first, but they take much longer to do so, and get slower and slower to heal as things get worse. Even though I manage my diabetes much better than you do, I'm still not 100% perfect, and I have a little bit of tingling and numbness in my feet and toes because of neuropathy. Luckily I still have some feeling, and have my wife to help me keep an eye out for wounds.
[quote=Tdarcos post_id=109978 time=1591176387 user_id=829]
[quote=Finsternis post_id=109934 time=1591121886 user_id=149]Your diabetes is killing you in a lot of different ways. On the one hand, I doubt that is news to you. On the other hand, I'm unsure exactly how much you know about all this, how much you know about the connections between the conditions, and how much you [u]want[/u] to know. And, frankly, how much you care.[/quote]
I am probably to some extent, aware of what is going on, even if I don't admit it to myself. As for caring, I don't know if I do.[/quote]
My strong suggestion is now that you're fully aware of this connection you decide how badly you want to live and in what condition.
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]
Well, you can tell me, but I don't know that it makes much difference. You may hae decreased mobility but at least you [i]have[/i] mobility. I've got [i]nothing;[/i] [/quote]
Yes yes, we know that, and I'm sorry. I definitely sucks. As I said, you are far more disabled than me. It has to be really depressing.
If you like, I will buy you [url=https://www.amazon.com/gp/product/B001B13PC2/]one of these[/url] I've found them to be indispensable. I think it makes life easier for people who have mobility issues. I can walk, but I can't bend down much or reach far.
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]
i can't even take a [i]shit[/i] without having to ask someone to change the diaper and wipe my ass! I get aides who sometimes tell me when rolling me on my side to hold on to something when there's nothing to hold on to [...] [/quote]
Sure sounds like it's awful. Again, I hate to rub your nose in it, but in all seriousness, you need to decide right away whether you want to slide downhill into misery and death or do the work necessary to attempt to improve your situation as much as you can. You're never gonna run and jump again, Paul, sorry. You know that. And I have no idea how much improvement you can make - that's up to nature and you. It's certainly well within the realm of possibility that you could get well enough to do a lot more things for yourself and regain some independence.
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]
Type II, probably over 15 years ago, since I knew it at some point when I could walk, so it's a least that far back. Almost certainly before 2000, so make that over 20 years ago.[/quote]
Then you absolutely lost your leg to complications from diabetes, no doubt about it. The infection was caused by a wound which you did not attend to because you either felt it but did nothing or didn't feel it at all. As a diabetic, you need to be hyper-aware of even the tiniest wounds on you.
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]This place stopped bothering to check my glucose and I don't know why, and I don't think they've ever checked my A1C. [/quote]
Hmmmm. <Angry face.> That is inexcusable. If it's true, you may have a case for malpractice. Then again, they can certainly defend themselves by pointing to a mountain of empty Starburst bags
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]Can't tell if they have me on a restricted diet, but they do give me weird selections in food, like at dinner last night I was offered potato salad with mashed potaoes (and nothing to put on them), black beans, milk, hot chocolate and some dessert. I might have had something else with it, I wasn't paying too much attention. How exactly am I to eat bare, unflavored mashed potatoes? [/quote]
Well, that's a terrible diet for a diabetic in any case. You shouldn't be eating mashed potatoes at all.
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]Oh yeah, no salt, of course, and while they used tp give me Mrs. Dash seasoning, I don't get that any more.[/quote]
Spices are cheap and something anyone can here can send you. I suggest you ask for those in place of candy.
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]I sometimes eat what they give me. [/quote]
And the other times you don't eat at all, or you eat something else?
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]Sometimes it's things I can't stand (like, as I discovered, Brussels sprouts) don't like (yams) or would be okay[/quote]
Yeah, I hate Burssels sprouts too, and yams, and beets. Have you tried talking to them about replacements?
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]
egg white, but they're often scrambled which is okay, but at times they come in a "foamed " method, [/quote]
It's known as a soufflé.
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]
Unlikely, I drink plenty of water. A while back, I got criticized because I wasn't drinking enough, and they had to insert an IV and give me fluids. I do [u]not[/u] want that to happen again.[/quote]
Diuretics aren't about how much you drink, it's about how much comes out. I suspect you are very thirsty all the time and even drinking a lot doesn't quench your thirst much. Ref "polydipsia" and "polyurea".
[quote=Tdarcos post_id=109927 time=1591118650 user_id=829]tHEN THERE ARE THE TIMES i WRITE A SENTENCE WHERE i WAS TOO BUSY WATCHING THE KEYBOARD
I too am a rotten typist who over the years has developed a method which is extremely fast but extremely error prone even though I look at the keyboard. So my extreme speed is effectively halved because I have to do back and do so much correcting. I tried to learn touch typing but after 40 years of doing it this way the muscle memory is just too hard to break. I have a new backlit keyboard which I like but the keys are a bit too small and I'm constantly hitting shift-lock and doing the same as you describe above.
Paul, it's all up to you. All these decisions are yours. All I wanted to do was make sure you were fully cognizant of the deadly seriousness of your situation. Sometimes we get so used to shining things on and ignoring them that we never get around to facing things. It would be sad to me if you just slid into misery and death without ever having made a conscious choice to do so. Though, as the poet says, "if you choose not to decide, you still have made a choice."
So your choice is clear. Either A) decide you don't care, that you'd rather die, and figure out the least painful way to do that. Pros: you don't have to do anything except suffer misery. Cons: give up years of your life. OR B) decide to live. Pros: you get to live longer and probably gain back some independence and possibly even some hope and purpose. Cons: it's a lot of work. You have to not give up, fight back, take control, do a lot of work and other things that are no fun, sacrifice, and so on. Many of those things are tough, or at least I find them so.
And you know, Paul, you are probably thinking I'm trying to shame you towards option B. And yes, it's what I have picked for myself. But if you pick option A, I personally would not judge you. Despite what "feel-good" Hollywood movies and After-School Specials want you to think, not everyone is a hero. Some of us just don't have that "gumption" and "drive" and "discipline" that are so highly praised. Some of us have Saint Salieri as our patron. Not everyone can be a hero. Lots and lots of people with problems never overcome them. We aren't strong enough. And that's OK too. Me, I'm still figuring out whether I have enough willpower to swing my course back to the good. I've managed to stop my slide into the depths, but pulling myself back up is even harder. All i can say is that I decided I'd rather go down trying instead of surrendering.
If you choose to not give up, I can give you some tips. You're already made a detailed inventory of things you can't do and things that suck about your life. Now make an inventory of what advantages and skills you have. None of them are physical, check. But compared to many people, you have lots of things you can use. You are intelligent. You write pretty well. You have communication with the outside world. Thanks to the internet, just those three things can be leveraged into getting yourself more assets. If you try to do this and find yourself concentrating on how hopeless it is and how it will never work, you're doing it wrong. Pretend that Ben or Jonesy or I have pout forth the proposition here that it is impossible for you to do anything to improve your situation. Try to prove us wrong. Remember what Tich Nhat Hahn (I think) said: "If you are depressed, you are living in the past. If you are anxious, you are thinking about the future,. If you are peaceful, you are thinking about the present." Or, more succinctly, what someone else said: "Whether you think you can or think you can't - you are right." You're gonna have to do it yourself,but it is possible.
The following goes for anyone with any serious medical condition that they want too be sure gets the best care, not just Paul.
Step 1) Learn everything you can about your condition. Take some online classes about diabetes and its care. Read some books and many web sites - about the condition, how it works, about the chemistry, the side effects - the works. Maker yourself an expert on it. There is endless information available. Don't just read one or two sources and feel you're done. Get so you can have an intelligent discussion about it with an M.D. Know what blood glucose is, how it works, what insulin is and how that works too, how they interact, what different medications are and how they work, your blood chemistry, etc. This is one of those places where [u][i]knowledge is power[/i][/u]. If you talk intelligently about your condition and make good points, people will respect you and NOT treat you like some amateur who has read a few quack article on "Dr. Google."
Step 2) Do the things you can do all by yourself to improve your health. In your case, this largely means STAY AWAY FROM CARBS OF ANY KIND, especially refined sugar. Obviously that means NO candy, NO soda, pasta, rice, or white bread. Think of it as poison to you, because it is. Try to keep your carbs below 60 grams per day - lower if you can. Every carb you don't eat is a victory.
Step 3) Using your knowledge of your condition, [u][i]gather some data[/i][/u]. In your case specifically, this means: take your blood glucose several times a day and record it somewhere safe (i.e., in a nice neat table in a spreadsheet or phone app, not on the back of a napkin). Keep a food diary of what you ate each day, what your BG reading was before each meal and 2 hours after. You can get a very good BG meter for cheap on Amazon. You only need to buy one or two containers of test strips because the goal is to get them to pay. You need data that you can wave at them, not just your opinion.
Step 3) LEARN TO ADVOCATE FOR YOURSELF. Our healthcare system has a lot of problems, and one of the biggest is that it;s test-oriented. The system really loves tests. They are discrete money units. They are easy to put a price on and to bill for. So they will give you lots of them - as long as someone will pay for them. The problem is, they often 1) don't even give you a copy of the results, and 2) the doctor who gets them basically "eats them and says nothing". A good doctor may give you a little advice, but beyond maybe writing you a prescription for something, few doctors will point you in the direction of what you should do next. They mostly just send you on your way and expect you to figure out "what next"?
SO: DO THAT. First, you have to get good at the skill of [u][i]firm but polite assertiveness[/i][/u]. That means: [u][i]Ask nicely, but don't take no for an answer[/i][/u]. Sometimes you have to push people a little bit,. Sometimes you have to get them to do things they won't normally do. Sometimes you have to pester them a little bit, or call them several times. This is most definitely a case of the Squeaky Wheel getting the grease. The people who get left behind, stuck in the system, are the ones who pay no attention and are apathetic. Don't be one. If someone says something can't be done, ask them how it could be. Ask what might make it possible. Ask if an exception can be made. Find the cracks and the loopholes and the nice people who are willing to do more for someone who is nice to them, someone who asks for their help in a kind way. Ask what to do next. How to follow up. What's next, etc. Believe me, in any system, but especially the US health care system, pro-active advocacy is the only way to survive the complex problems. If there's some kind of administrative issue, find out how to fix it and either fix it yourself or get ask someone nicely to do it over and over until they do. Using these kind of tactics, I recently obtained $18,000 worth of medication for $20. It works if you are clever and persistent.
Step 4) Now that you understand assertiveness and you have a bunch of data, start your campaign for better care. Be as nice as you can without being a pushover. As politely. Use reason. Ask for reasonable things- a blood glucometer, free test strips, and monthly (or more) A1C tests. Ask to see a diabetes specialist right away and get on the proper medications, including both quick-acting and long-basting (basal) insulin. Ask for a very low-carb / high fat diet. Don't let them rest until you have those things, even if it is only to get you to shut up about it already. Once you have those things, become obsessive about them. Take your BG and insuin 15 minutes before every meal and test again two hours after. Write everything down in meticulous detail.
Step 5) If you can do those things A LOT, religiously, you should see a lot of improvement, not just in your blood sugars and A1C, but also in your general condition. You won't jump out of bed and start dancing around, but I wouldn't be surprised if your pain was less, your mobility and flexibility were better, your tingling and numbness decreased, you blood pressure and other stats improved, and so on. Diabetes affects every single part of your body.
IF, after every possible attempt to work things out nicely, after being kind and polite and patient and understanding, you they STILL refuse to give you proper care, then it's time to gently start to hint at the big guns. You are a diabetic suffering form a very advanced stage. Failiung to treat you properly is basically a crime, and it's not as if you are asking for expensive surgery. Meters, test strips, A1C tests, and proper meals are not expensive. Talk to the hospital administrator or ombudsman if you can. Otherwise, start casually dropping words like "malpractice" and "investigation" in a sad, mournful way as if you really don't want to do those things but they leave you no choice.
Those are the basic steps. Try those and see how they work. If you encounter issues, say so here and we can all try to work them out.
Be well. "Choose life."