I had a similar journey. I was 26 when I was diagnosed, first doctor I saw thought I was type 2 so I went gung ho on treatment for that. Went pretty low carb, cut soda and sugar for the most part and had my A1c at 6. Then about 6 months into it that stopped working, despite the doctor throwing pill after pill at it and paying more for each one, none of the working, I just gave up. My eating habits got bad, my A1c skyrocketed. Eventually I convinced the Dr to send me out for a c peptide test, after explaining what the test was, and confirmed Type 1, at which point he basically told me there was nothing he could do for me. Felt like I was starting all over again, and took a while to come to terms with the whole thing, which I still struggle with from time to time. As for injecting in public, Iām usually not too shy about that. I enjoy having the opportunity to explain the whole thing. Iām a bit of an introvert but if you get me going on some topics Iāll talk for hours.
I was age 70 when diagnosed, so for me accepting it was no big deal. All my siblings have worse problems than I do. My oldest sister had heart failure and has since died. My older brother has had a stroke and doesnāt have complete control of one arm, my second sister has a horrible physical deformity with a dowagerās hump and since my diagnosis has also had to have two hips replaced, my younger brother has terminal cancer, and my youngest sister has been wheelchair bound with a spinal fracture for over 30 years, plus sheās bipolar. One of my college roommates has alzheimerās and her husband had to have her institutionalized about five years ago because sheād become so aggressive that he could no longer handle her at home. Many of my friends have gone through radiation and/or chemotherapy and some havenāt made it.
By comparison, diabetes is no big deal. At least with it, Iām almost completely in control of it myself. With most anything else I could have gotten, Iād be almost totally at the mercy of doctors to keep my condition under control, if that were possible. Iāve had my diabetes under sufficient control to achieve an A1c under 6.0 on MDI ever since I went on insulin. I just do what I have to do to keep it there.
puts things into perspective.
T1 for 30 years. Accept it - not really. But since I cannot rebuild or replace the carburetor, I know that I must watch what fuel I consume and amount of insulin I must add for the engine to run OK. Consider it as requiring continuous maintenance and readjustments.
There are so few Type 1s that you donāt need to be freaked out about it. My familial connection is that I developed Type 1 38 years after my brother did, but other than the two of us, there really is no one else in our family tree who ever developed it. And though itās awful to say, you and I are fortunate that we developed Type 1 in the last ten years (7 years ago for me).
The advances in treatment and technology are astonishing. When my brother developed it, he was taking bovine insulin and testing with urine strips. The control you can have today is much more easily achievable and a lot of really awesome tech is about to go wide that will make basal control VERY easy.
Remember this perennial thread from the old TuD site?
@bucklyāyou might take some comfort from the hundreds who weighed on that topic. In my case I have a huge extended familyādozens of first cousins with their own families as well as my 5 siblings and their families. I know of only one other person with T1 (my cousinās daughter). There are some cases where it tracks in families like T2 tends to do, but the general rule is nope. So I wouldnāt waste a lot of time worrying about it.
thanks for bringing that one back @DrBB - It was super popular. Iām the chosen one for real, no one else!
This myth was created and fueled by the mainstream medical establishmentās discovery that a basal/bolus regimen produced better control while enhancing the lifestyle of the person with diabetes. I fully appreciated the freedom that the basal/bolus regimen enables but it has some important limits that are not often talked about in this context.
There is a limit to the number and type of carbs you may consume without undue hypers and variability. As the carb load goes up, so does the demand for a well-managed plan as to insulin timing, multiple doses, and pre-emptive exercise following a meal. And the long term consequence of eating too much food is weight gain, the bane of all people, including non-diabetics.
The habit of sustained high insulin levels may lead to insulin resistance and a whole host of BG control challenges. I think the advantage of the basal/bolus system over the archaic sliding scale or fixed doses can only be enjoyed to a point. If you push it too far, it produces poor results. Carb up, shoot up, is not the answer.
Your closing perspective indicates that you realize the limits diabetes places on a person. We must balance the forces of insulin, food, exercise and many other factors manually, no small feat. I think acceptance comes when the situation is fully appreciated and the person is willing to do what it takes to produce a happy equilibrium. Good luck with your quest!
Thank you for your helpful response. I didnāt know that about insulin! (that if you take a lot, your body could become resistant to it.) I will remember that.
āMayā is the operative word here. For me, increased insulin doses led to insulin resistance. Others may report differently but my experience is not unusual. All things being equal, I prefer to keep insulin dosing to a minimum.