Need Inspiration. Success Stories


(Steven) #1

Hello fellow T1s. I have to admit that my confidence took a giant hit when FINALLY correctly diagnosed (at age 55). Going to meet some T1 distance swimmers tomorrow. Need to get back on track, take my life back.
I would like to hear some inspirational stories from those who were diagnosed at a later age. (“Terms of Endearment”, Debra Winger to Shirley McClain…“You’re NOT middle aged, you’re 60. How many 120 year olds do you know?”)
Anybody? Big to small victories. Any and all appreciated. Thanks.


(Sal) #2

Can you give some more background on this? I take it you were originally diagnosed as T2. If so, how long ago?


(Steven) #3

Sure. When I was originally diagnosed 8 or 9 years ago, the Endocrinologist told me that I was T2 (even though I didn’t have risk factors AND I had GAD antibodies). It just didn’t seem to fit, but I went with it because he said so. I was fairly well controlled, but he kept adding more meds. He changed his practice, so I had to find a new doc three years ago. The new doc said that he believed I really had LADA and finally changed to insulin.
I am still fairly well controlled (thankfully). But the MENTAL aspect has been the hardest. Recently, probably because of some major life changes, I’ve been having more highs and lows. It’s thrown me off and I’ve been isolating more and exercising less. Not good.
I’m glad to have found this forum, but don’t know anyone personally who has gone through a similar path. Those that I know who were diagnosed at a young age seem to cope better (maybe because they’ve had to cope for a longer time?).

So. What am asking is has anyone with a similar story has had a “breakthrough moment”, was able to take their life back and…for example
completed a marathon;
backpacked the Appalachian trail solo;
or simply completed a major life goal that had been eluding them.

I’m an extreme introvert and reaching out is REALLY difficult for me, especially since this has been my lifelong personality pattern.

Any thoughts?


(Andy) #4

Well, I just celebrated watching the scale go past 180 for the first time since March 2017.
T1D took 45 pounds from me without even asking. My pre-T1D clothes actually fit again. I don’t have to shop in the young mans department anymore or walk around looking like some reject from American Idol.
I know it’s not all that “inspirational” to most folks but I’m from Southern California. We are a shallow bunch out here.


(joe) #5

F@&)) yea it is Andy. It is an inspiration that you regained control, well if manual control, and have reversed the water and muscle mass lost due to t1d.


(Steven) #6

Congratulations on getting the weight back.
You can’t be too shallow if you’re allowing yourself to be seen in LAST FALL’s clothing line. :smile:

I realize that I’ve given T1 too much control, that it’s up to me to set goals (however small) and follow through. I know you all understand. It’s those runs of “off” BGs that throw me and make me pull back and isolate. It’s so frustrating. Plus the highs make me emotional. (You know how embarrassing it is to get all teary eyed at a Nature Documentary!?)

Honestly though, Andy, I think your ability to keep a sense of humor through all of this is what inspires me. Dare I say it? “You are the wind beneath my wings!” SW


(Andy) #7

I recognize I was diagnosed later than most. Im VERY fortunate for that.

When I was first diagnosed, I read up on all the bad stuff, just to get it out of the way. Haven’t look that stuff up since week one. No need borrowing trouble.

Its a simplistic approach but it works for me.

MY blood sugar is high. I can fix that.
My blood sugar is low. I can fix that, too.

I consider myself kinda lucky actually. I am actually thankful I went thru a good bout of DKA.

Hey, you’re a MD. I have a question. Is it true that when you have a colonoscopy, if you have polyps removed, they tattoo small roman numerals on your keister to keep track for the next colonoscopy?


(Christopher) #8

I am happy to run into someone else who is a late bloomer. I was diagnosed at the tender age of 61, nine yrs ago. I had mysteriously lost 25 lbs. Fortunately, my internist knew right off that this wasn’t normal T2D, since I had never been overweight. Specialist did the Gad test, said ”You’re really old to become a T1D, but you have. Not much data for people as old as you, so you’ll have lots of questions that I won’t have answers to.”
I got by without insulin for 8 yrs., but have been on Toujeo for a year or so. I seem to keep pretty good control, have more trouble with lows than highs. I can manage to be pretty faithful about the low carb diet–I tell myself that for the first 60 yrs of my life, I ate whatever I wanted, never gained weight. If for the time remaining, I need to deal with dietary restrictions, I have no grounds for complaining. Endo is pleasantly surprised that I’m still making some insulin, warns that eventually I’ll need a pump.
When on my own, I can eat when I need to. But I’ve recently moved to Palm Springs, where there are lots of opportunities for socializing, in situations where it’s hard to regulate when and what food is on offer. It’s awkward to drag my date way from a cocktail party because I need dinner, but this is a small complaint. Mostly, I do one day at a time and try to make it enjoyable for me and those around me.


(Andy) #9

SO CAL in the house!

Chino hills here.


(Marina) #10

The small victory is this — I was diagnosed at 71 and am still here at 82. My grandfather died at 45 ( leaving behind 12 kids — ok, not all 12, some died in infancy)… and my mother died at 76… both from diabetes 1. I have 2 daughters, 2 grandkids ---- so far OK. So maybe this is not a small victory after all. My grandfather did not stand a chance; my mother’s testing was primitive, compared to what we have today. An exercise and supplement regimen is helping me a lot. An inclination to optimism is something else I have inherited,


(joe) #11

if you don’t mind me saying so, @mkurkov, survival is no small victory! a diagnosis of t1 without meds is a death sentence.


(Steven) #12

Thanks to everybody with such positive attitudes. I’ve always been a pretty much been a “glass half empty” kind of guy. I guess it’s NEVER to late to change!!!

Andy, in answer to your question; I don’t have an answer. That was not my area of medicine. I can easily find out though. It sounds like something they’d do.
But how??? Trained gerbils???

I recently had that enjoyable experience. I was proud of myself in that I was able to keep my BGs under control while undergoing the “Clear Liquid Diet”. Happily they found nothing. So, no tattoo. I have to go every 5 years because my mother is a colon cancer survivor. If they find something next time, I want them to tattoo “MOM” inside a heart.


(Andy) #13

I had three polyps removed. I have searched high and low with a compact mirror for evidence of tattoos because I’ve heard from more than one person that they always do a tattoo if you had polyps.

The only thing I’ve discovered is that my wife doesn’t want the compact mirror back.


(Steven) #14

LMAO! Did they give you a gerbil when you were released? If so, you have your answer.
I’ll get back to you after I talk to an Internist friend.


(nscole@earthlink.net) #15

Hi Steven,
I was perfectly healthy until age 56, when all of sudden things went haywire. I couldn’t sleep, constant headaches, sooo tired, loss of strength and endurance (I owned a fitness studio and was a certified nutritionist), irritable, one infection after another. But what forced me to go to a doctor was an 18 lb. weight loss in one month. I went from 125 to 107 and felt and looked terrible. The doctor ran and re-ran the tests because I didn’t fit the profile for T1 or T2 diabetes. This particular doctor put me on long acting insulin (27 units a night), so I went to the pharmacy and got the insulin and cried all day, but took the insulin as prescribed. By the next morning my blood glucose level was down to 8. I was unresponsive and my husband rushed me to the hospital. He was supposed to be out of town on a business trip and decided after my diagnosis to postpone the trip by a day. I believe that if he hadn’t been home, I wouldn’t be here today to tell this story. Anyway, here we are 5 years later and I finally got on an insulin pump (Omnipod) and am using the Dexcom 6 system and doing as well as can be expected. I retired at the end of last year because it was just too hard to run a business and take care of my own health. I still am very active and work out, bike, swim, SCUBA, and hike. Some days, it just isn’t possible, but for the most part I can do what I want. I eat very low carbs and fill up on lean proteins and vegetables. I empathize with you. Probably like me, the diagnosis of Type 1 Diabetes in mid-fifties was shocking and a definite life changer. Good luck to you, Steven!


(Steven) #16

Thank you @nscole. I think shock is a good word to describe what I went through. Shock at a T2 diagnosis when I had no risk factors. Shock and grief when I was told it was really T1, because that meant all the healthy eating and exercise wasn’t going to make it go away. But I had put it on a back burner while I dealt with toxic work problems.

Now, though, I realize I am going through the grief process AGAIN. I was able to retire early and now that I don’t have work problems to occupy my mind, I suddenly realize that retirement is never going to be the carefree, spontaneous adventure that you see on commercials!

Of the seven stages of grief, I never seem to get to 7) Acceptance and Hope.

Reading these posts however is helping me to understand better what I need to do to move on. Thank you so much.


(Carol) #17

It is comforting to finally find T1D people diagnosed later in life. Apparently, this is unusual, something I did not know for quite some time after my diagnosis.

Two years ago, at 67 years old, I had a severe case of pancreatitus and lost all insulin production and digestive enzyme production. Essentially, my pancreas is dead. I now take Novalog and Lantus for insulin and Creon for enzymes. Creon alone cost $96/day. Thankfully, I have found financial assistance for the Creon. I also closely watch carb intake. I try to keep it below 60 each day.

I have always been healthy, happy and fit. Now it is not so easy. My BG shoots up with any exercise. So, I am still trying to find that balance of exercise and BG levels. I have had to give up more strenuous exercise for bicycling and walking. My aged body in conjunction with TD1 could be the reason I am not achieving exercise goals from the past. But, I look around at many people with health issues much worse than mine and realize my situation is livable and goals are achievable.

I have started to travel again. Meds management can be a challenge. But, I feel liberated when I can get away.

Take Care Everyone

Carol


(Dennis J. Dacey, PwD) #18

Hi Carol @cpeitersen, it is not unusual that adults are diagnosed with TypeOne, what is unusual is that more adults are CORECTLY diagnosed. Too many doctors currently working have in imbedded in their minds that only kids can get TypeOne. The JDRF reported sometime ago that less of those [correctly] diagnosed with TypeOne are children.
Not too long ago I was cured of TypeOne by a doctor; when he was sizing me up for a procedure he said the first thing he would do is fix my medical record “… you can no longer be TypeOne so I’m writing Type 2”. I asked him, on what basis?, and he replied I read your date of birth. Ohhhh yeah!


(Andy) #19

I want your doctor.
You think he’d be willing to change my date of birth so my dermatologist can start using words like “freckle” instead of “skin cancer”?


(Dennis J. Dacey, PwD) #20

Andy @AJZimmerman, you would not want a doctor who made an ignorant diagnosis change based on ….

Perhaps you miss-read what I wrote - the doctor did not change my date of birth but rather changed a diagnosis out of ignorance. That doctor is no longer in my stable of specialists.