Hi Marilyn,
I just hit 50 years T1D this month. No significant complications at all. But I sure am getting worn out due to the effort this takes.
I live very close to groundbreaking diabetes research, so I may apply for one of their programs.
It’s Dr. James Shapiro, he’s doing amazing work.
Here is what he’s up to now:
Cheers and all the best!
Sincerely,
Sheryl
Hi Sheryl, I certainly can identify with being worn out! So glad that you don’t have any significant complications. That is wonderful news.
This research sounds very exciting!
Almost 53 years for me. Went into the hospital in November 1968 (shortly after Hallowe’en - what a surprise!) when I was seven, and my poor mother owned my disease for years. I don’t remember when she wised up and gave it back to me. I’m never sure whether to curse or thank my genes, which brought me the disease and allowed me to come through many years of very little management without much damage. It’s only been a full time job since CGM.
58 years, we should investigate starting one, our issues are a bit more challenging I would say. Many of the things I experience even puzzle the MD’s at times.
Mark, would you want to share any of your issues? I have been experiencing more issues lately, but have no idea if my 62 yrs of type 1 has anything to do with these new issues. I do know that my older sister who doesn’t have diabetes remains issue free.
I have lived with Type 1 for 51 years. It would be great to have a group for the veteran people living with Type 1. I have avoided any major complications thankfully 
I have been Type 1 for 57 years now. It’s certainly easier to handle diabetes today than it was when I was first diagnosed (I absolutely hated sterilizing my glass syringe and needle in boiling water and then jabbing myself with what, compared to the tiny disposable ones today, was a HUGE needle.) Luckily, I have no complications and my last A1c was 5.7
Hi everybody! GREAT IDEA! I just emailed to the “Get Involved” contact link: “I’m Dottie Love, 54 years Type I, age 65. Longtime lurker. A discussion just came up, I forget exactly what category of the forums. About 50 people posted about the possibility of a special forum for us, and how great it’d be to have our own. Do you think that could happen? I don’t know how/where to ask. I feel like we’d really be informative and inspirational to “the youngers”. When I (age 11) and my youngest brother (age 9) were diagnosed, we weren’t supposed to live to 30 years. We both had many many many years of poor control. I can’t guarantee I could handle being an admin, but I’d certainly be a very active contributor. Is there a process to request a new forum? Thanks VERY much! Dottie, Ennis TX.”
What plant sterol are you taking Timothy?
Cholestoff. But only cause it was the first one I heard about on here. Right now it’s working great so I’m sticking to it.
If it changes, I’ll try another.
I think that Timothy is taking the plant sterols and stanols that my cardiologist recommended. I am taking CholestOff Plus.
I can not take statins and this was a last resort idea.
I have been taking them for about a year I think. My LDL has gone down from 114 to 91. My total cholesterol numbers are total 152, Triglycerides 42, HDL 53.
My HDL has been up to 99 in the past, but that wasn’t necessarily a good thing for me.
I am a pescatarian.
Yes cholestoff and cholestoff plus seem to be the exact same thing.
I eat small amounts of meat. Skinless chicken or turkey, but I don’t eat fish at all because I have an allergy. It’s severe foe shellfish, but even freshwater fish will give me a reaction.
I also consume yogurt, but that’s pretty much it.
I always though I was pretty low fat, until I came on here and saw how low , low fat real is.
I eat about 25% fat on any given day. It’s not really a diet or a plan, I just eat like that and I avoid processed food when I can.
We eat Alaskan salmon once or twice a week. Too bad you are allergic. My mom was very allergic to shell fish.
My allergy comes from a ct scan with iodine reactive dye.
When I was diagnosed with diabetes I had migraines, and they did a ct of my head. The headaches went away, but after that I had an iodine allergy.
I get anaphylactic from it. I’ve had problems sharing a glass of wine with someone eating it.
I won’t ever eat at a Japanese grill where different foods are cooked on the same grill.
I could manage fish but I’ll suffer for an hour
Fun to read this thread. I’m at 55 years as a T1D. My Endo tells me I should send in the forms to Joslin, but I did not keep any proof of the date. At least I remember the hospital and I plan sometime to contact them about seeing if they still have records on microfilm or something.
I found myself in the hospital recently (basically unrelated). They were good at their specialty but had absolutely no idea how to manage a T1D. They would not allow me to manage it myself and refused to take action. With my CGM, I complained I was over 250 and sometimes 300 and they would not give me a fast-acting shot.
I explained I’d been managing it all myself for 55 years, and that did get their attention and they began to test me during the night, but their sliding scale for me was wrong so they never got things right. I was incredibly happy to leave and don’t plan to return to that hospital…
Dear MM1,
Thanks for posting the Joslin link here. Every so often I am motivated but could never find out how, I think.
I vaguely recall having to acquire specific records but became frustrated when every single direct link turned out to have died long ago, and I just did not feel capable of doing the kind of persistent sleuthing that it could take to get my history. I was never hospitalized at the time of diagnosis & have no written records such as family letters or diaries. I was never referred to any specialists but only diagnosed & taught by our family doctor).
Thank you! I’ll give it a try! I am totally plant-based, no oil, but still can’t drop total cholesterol below 200 without a small dosage statin. Would really like to get off it.
studying what is common about us longtimers is / will be truly different since a) rapid, cheap-er genome mapping, and b) CRISPR-cas9 and “genetic medicine” / gene therapy which may be truly informative rather than the more anecdotal & haphazard, despite lacking as much of the essential behavioral side of how our disease progresses
we must all remember that we are commenting about dead longtimers only because we’re still living. It is highly likely that AT LEAST an equal number of T1Ds (from the same year as our Dx) died from all the other reasons that non-long-term-diabetics die. So we have no conversations/info with/from them comparing anecdotal histories. But that doesn’t necessarily make us ‘special’ in any otherwise definable way.
“they liked to dance” !!! Funny thing, that I – living a 5 minute walk from the WXPN World Café Live venue –have been going to the radio station’s Fridays live “Free At Noon”: a live band on tour agreeing to get up early and perform for the hundreds of people on lunch hour, hospital staffers, university students before they do whatever evening gig they have. Often it has been that they appear the next day on Saturday Night Live.
So, yup. I am also a longtime Type 1 who “likes to dance”!
[(dance hall room with bar) & its offices & broadcasting studios & hosts/DJs Helen Leicht or Dan Reed or D’Alessandro, Bumbera and even station general manager Roger LaMay]
I am now on my 2nd week of a 5mg steroid “prednisone”. But I allow as how I did not do much learning about glucocorticoids + Type 1, in me.* I just finally am - gradually - bowing to my specialists, while filtering them through my endocrinologist - who is now my longest-standing doctor, and I have learned to deeply trust & rely on his judgments.
So far, my endo has ‘refused’ the wishes of my primary care physician (PCP) who has wanted to get me on a statin. (amongst my other physiological status, my total cholesterol is <200, but my HDL has forever been inordinately high (120+ until 2016, now ~75), that being ‘good’ cholesterol having been shown to have strongly associated effect of having very low incidence of CVD).
Hi there, just want to say that my HDL level was 100 when I received heart stents, but my LDL level was high too. I no longer trust that HDL levels mean as much as I thought that they did.