I was told it was curable


(SuperSam101) #1

When I was first diagnosed I didn’t understand the difference between Type1 and Type2 diabetes other than type two is semi curable with exercise and a healthy diet. So I asked the doctor “but it is curable right?” He replied “yes”. You can heal me as much as you want but the lie he told me was the most hurtful. I had hope that there was a cure and that I would only have to live half a year with the desease. Unfortunately it was a false hope. That false hope cut me deep. Whenever I search “cure for T1 diabetes” there are all companies saying “new stem cells cure for diabetes etc.” but the draw back is that you basically have to destroy your immune system with immune supressive drugs. They will then say that they expect the cure in 3-6 years. Certain companies said that 7 years ago. And even now companies some saying they will have the cure in seven years are only announcing this now. So I have to wait 6 more years to maybe get a cure or atleast a substitute that will make this suffering easier. The doctor… oh that doctor who said it was curable, has no idea what pain he caused me.


(joe) #2

7 years ago? Medical professionals were saying that exact phrase to me, 37 years ago. They were saying that probably 50+ years ago. Eternal optimists.

@supersam101, if you don’t mind my opinion, don’t get caught up in the trap. This part right now IS your life, so don’t waste another minute wishing it were different. marveling about how great it would be…IF…

similarly, I bet that doctor will not be the only one, ever, to tell you something you wanted to hear… it’s totally up to you what you do with that information. A little Irish lady told me “if it sounds too good to be true it probably is”, and she also said, “in this life you are either laughing or crying… so pick one”.

a pancreas transplant isn’t a cure, either. like you said, the transplant requires you to take immuno-suppressant drugs, you get to make insulin, but those drugs are very hard on your body, so much so that these transplants are often last-ditch efforts to keep you alive, not really a alternate therapy choice is you ask me.

I do get what you are saying, but I think everyone has stuff to deal with in their lives. every has a “Cross to bear” or a boat anchor to drag, or other huge complication or stress to deal with, no to not deal with as they live their lives. I hope you can find peace with diabetes, and find out how to do the things you want to do, and do the things that make you happy.


(joe) #3

7 years ago? Medical professionals were saying that exact phrase to me, 37 years ago. They were saying that probably 50+ years ago. Eternal optimists.

@supersam101, if you don’t mind my opinion, don’t get caught up in the trap. This << this part right now>>> IS your life, so don’t waste another minute wishing it were different. marveling about how great it would be…IF…

similarly, I bet that doctor will not be the only one, ever, to tell you something you wanted to hear… it’s totally up to you what you do with that information. A little Irish lady told me “if it sounds too good to be true it probably is”, and she also said, “in this life you are either laughing or crying… so pick one”.

a pancreas transplant isn’t a cure, either. like you said, the transplant requires you to take immuno-suppressant drugs, you get to make insulin, but those drugs are very hard on your body, so much so that these transplants are often last-ditch efforts to keep you alive, not really a alternate therapy choice is you ask me.

I do get what you are saying, but I think everyone has stuff to deal with in their lives. every has a “Cross to bear” or a boat anchor to drag, or other huge complication or stress to deal with, no to not deal with as they live their lives. I hope you can find peace with diabetes, and find out how to do the things you want to do, and do the things that make you happy.


(SuperSam101) #4

@Joe I am trying to live my day as best I can. But when my sugar gets in my way it reminds me of how weak my chassis actually is.


(joe) #5

I understand. Let me offer this: if weak is multiple daily injection or all the scarring from my pump infusion sets, if weak is the 50,000 plus times I bleed into a tiny machine, if weak is dealing with my eyes and doctors and insurance, and if weak is still being able to smile then yes, My chassis is also weak!


(SuperSam101) #6

Our chassis are broken and weak, that is (sadly) what people today focus on, not on your mind and how mentally strong we are. In my opinion anyone coping with diabetes is mentally stronger than many people in the world. So why don’t they look at that then? (rhetorical). It’s because people today are shallow, vein… all about looks not about how beautiful someone is on the inside. Only a small amount of people look on the inside of someone and notice how amazing their mind actually is. But yes

Chassis weak

Mind Strong


(SuperSam101) #7

@Joe forgot to tag sorry


(joe) #8

@SuperSam101… Mind strong - now that’s more like it!


(Dennis J. Dacey, PwD) #9

Hi @SuperSam101,

@Joe is offering you some wonderful advice, listen carefully to what he is saying. I’ve lived with this diabetes stuff for more than 60 years and I have a smile on my face - accept that you have a very lethal, non-curable condition and move on to lead a productive life and to make a positive impact on this world.

Will there ever be a cure for T1D? Possibly, but I’m not banking on that but rather I’m accepting what I’ve got and making the most of my life. Currently, especially in the last dozen years, there have been many advances in treatment options and some good devices that our lives “easy” - try to imagine these bays waiting two days to get a blood sugar reading.

Please try to develop a positive attitude - many people don’t have life as good as you. You say your “sugar gets in your way” = ask yourself why, ask your healthcare team for guidance; I’m not a medical doctor but I would be very willing, with your doctor being advised, to offer suggestions and advice based upon my experience. No, I have not been “perfect” in my management but I have become quite competent.


(Sandra) #10

@SuperSam - Hang in there, bud. You are in good company - a million or more of us are out here with you managing this thing. I like the sentiment you shared - Mind Strong. When I was first diagnosed, I found comfort through meeting with other T1Ds. Actually, I created a support group since we didn’t have one in my area, and it helped quite a bit. My philosophy at diagnosis was that I was going to use all the tools available to be healthier than the non-diabetics. So I went about it with focus, and 31 years later, I’ve pretty much achieved that goal in addition to many others. Make some big goals and keep striving!!


(SuperSam101) #11

@Sandra thanks, I’m a poet :wink:

I try but sometimes it’s hard to get out of bed in the morninfg. Injecting isn’t worth it , causeyourself pain for such a little amount of food. I am trying though. I am healthy. :slight_smile:

@Dennis I try to be positive but there was absolutely no reason to get this disease. No sickness or stressed. It also doesn’t help when you inject and peopl look at you like done sort of monster


(Sandra) #12

@SuperSam, don’t worry about people looking at you while injecting. They’re just curious and maybe they want to tell you about their aunt who has T2D. I have gotten weirder stares from people when I’m standing in line at the public restroom woofing down Starbursts due to a low blood sugar. Looks completely weird to people. So, if people stare while I’m injecting and I’m feeling social, I will tell them why I’m doing what I’m doing. And then they’ll tell me about that aunt of theirs. Or, I might just tell them it’s heroin, but I’ve run out of veins, so now I use my belly. Hopefully that gets them laughing. Whatever works for you. :slight_smile:


(joe) #13

@SuperSam101, I struggle with “why me”, more so when I was between 12 and about 30, but I do struggle a little today. it seems like I upset some cosmic balance that could only be righted by my punishment. so begins a cycle of victim, self loathing, anger, depression.

somebody once asked “why not me”, which stuck in my mind for years as a different way to look at it, since I set it up as a personal punishment, then the converse question must also be asked.

I have 4 siblings, “which one of them should I give it to then” is yet another convolution, if it is a punishment, then maybe I could defend myself and therefore someone who deserved it should have it…

the long road to acceptance started with the concept that there was no wrongdoing. there was nothing I did or didn’t do to get diabetes. There’s nothing to get anyway (in my opinion) diabetes is a set of symptoms around a unintended attack against my beta cells. just like an allergy where your immune system mistakenly attacks pollen, the program gets messed up and sometimes the defenders attack the wrong enemy. “friendly fire” is a better description. When I am near people who actually want to know and learn, I describe diabetes as an allergy.

at the very least, I am very glad my immune system didn’t malfunction in a way that led it to attack my joints (rheumatoid arthritis) or my nervous system (multiple sclerosis).

the world just is. it’s thinking that makes it good or bad.


(joe) #14

@Sandra, btw, thanks your bit made me laugh. this is certainly a different interpretation when we say “oh I’ve been high for hours now”!


(SuperSam101) #15

@Joe yeah @Sandra comment was quit funny.
but I mean if I could give this disease to anyone I know many people that deserve it more than I do. I would give it to my friends even, teach them some discipline and show them after the past two years that it’s actually hella hard to live with. They wouldn’t last a week. I haven’t done anything to deserve this. So why must I get it. If there’s so much evil in the world, how does it help putting the smolders of good out. (Christian btw)


(Sandra) #16

@Joe, I enjoyed your philosophy - why not me? rather than why me? - when something bad happens. Life is full of twists and turns and not one of us is immune. It really is what you make of it.

@SuperSam101, it sounds like you have a kind and helping heart, and there’s a lot of need out there. Through T1D, you’ve been given a deep sense of how your metabolism and biology works. How many people have that, at any age? Could that be a gift in disguise? Consider how you might use this knowledge you’ve gained to put to good use. Some T1Ds choose to become doctors, nurses, dieticians, health coaches or researchers because they have an insight that few people have. You might want to participate in one of JDRF’s walks, to start getting connected and looking outward. When I need a bit of inspiration to feel better, I recall “Nick Vujicic”, whose story is on YouTube. You have a purpose in this life. Stay strong. :slight_smile:


(DDrumminMan) #17

@supersam101 - Your doctor lied pure and simple.

You mentioned that you don’t like doing injections in front of people. Well then don’t. I don’t. I excuse myself to another room or off in the corner somewhere. It’s not that I’m ashamed, it’s just none of their business. Most people don’t understand and think you’re some kind of a sickly invalid or something. You could educate them I suppose like someone else said I suppose, but I don’t.

I just don’t want people getting the wrong impression and thinking I’m some kind of inferior person who can’t do some things. F*ck that. I can do anything I want. And so can you.

I also don’t get the “deserve” thing. No one “deserves” a genetic disorder. It’s the luck of the draw. I’ve had far worse things than diabetes happen to me that seem to happen to very few others. Another luck of the draw thing.

I don’t like doing blood tests and injections, but it’s life for me.

I hope you will be able to accept it and move on to have a great life! You deserve it!

Maybe you could talk to a counselor about it?


(FriendlyGuy64) #18

Type 1 diabetes is NEVER cure! I have been hearing it every 5 years for 50 years. Lots of BS about curing type 1 diabetes. Please accept it and live with it for the rest of your life.


(SuperSam101) #19

I already new enough about diabetes and my metabolism etc. Now it’s just refined knowledge. I literally know too much about why I have this pathetic disease. @DDrumminMan


(SuperSam101) #20

So it’s probably that time again where I become upset because I either can’t do something or it’s just been building up for too long. The latest thing I’ve been reading about is… blaming yourself for getting diabetes. As if in some way you could’ve protected yourself from the disease. I definitely have taken this into account and I do think about it quite often. Usually being “Was my immune system under strain the month/weeks before. I do blame myself sometimes, that being a stupid prospect I think can be set aside because it no longer resides within me.

The next thing on my list of cynical notices is… being discriminated to the point where you actually wish you never even told the people you had the disease in the first place. So recently I’ve met a really nice lady (girl in school) but one day she asked me why I wasn’t eating any of the year end celebration puddings. I at first said I didn’t like them. She then said that that could not be it - she is very perceptive - so I told her. Just as I told her some of the not so friendlike guys in my class overheard and were like first pitying but then began to go on the usual trails of “did you get it from your grandma and I heard there isn’t a cure that sucks” I was just sitting politely listening but I mean really.

1: I know there is no cure and I don’t need to have that constantly shoved down my throat.

2: no it’s not the “genetic” one

3: it does suck but luck for you you have everything served to you on a golden plate.

I come from a average family (if you could call them that) and everyone else in my school is a tad richer (I will use the term rich, not wealthy) than me. Having phones replaced on a dime after flushing them in the toilet or something etc. So I’m sitting there and then they pretty much shot me down until I said. “I hope you don’t mind, but you’ve interrupted a fine day about the end of the school year, to make the most idiotic statements and perform acts of defamation.” They looked at me and I looked back at their blank faces and said “yo dawg yo rude butholes betta move on…” they were then like “oh…”
Moral of that story being don’t try speak Italian to penguins.

Anyway bla bla bla conclusion need some helpful messages right now (if anyone has the time to read this).

Thanks :wink: