How long type 1?

(bcgirl) #81

I’ve only been diagnosed since June 2014. In my 50’s and had an A1c of 13+. Changed to a pump 5/2015; A1c down to 8.3. How long after the start of pumping did you feel you had a better control? Still having too many ups and downs. It’s exhausting!

(debbie-p) #82

I have been a type 1 for over 37 years. I am 61 years old and have had 2 trigger thumb surgeries and frozen shoulders. I have been on the Minimed pump since December 2007 and got my 2nd pump last April. I am hypoglycemia insensitivity and wear a CGM. I purchased the uploader (Minimed Connect) for my pump so my husband and daughters can all view my blood sugars on their iphone’s via the app they downloaded and they can rest assured that I am OK by viewing it.

(cierhianna) #83

I was misdiagnosed as a Type 2 at the end of 2013 because I was in my mid 30s. At time of diagnosis my A1C was 13, but my doctor didn’t seem too concerned and put me on Glipazide. I didn’t know any better so just did what the doctor ordered and cut out a lot of carbs and started exercising as much as I could. My A1C of 13 dropped to 11 in 3 months, but I wasn’t feeling any better. To make a long story short, I went to an Endo and insisted I get tested to make sure I had the right diagnosis. My C-peptide was very low, so was immediately put on insulin shots. Brought my A1C down to 9. Then had to wait to get on a pump. My last A1C which was this month is at 6.1. I think it is too soon for complications, but I do have damage from my sugars being so high. I developed a heart murmur, major gum disease that caused bone loss in my teeth. I don’t have to worry about Diabetes making me blind as I was born premature with glaucoma, which took most of my sight in my late teens leaving me with only light perception. But during the time I hadn’t yet been diagnosed and my sugars must have been crazy high, my glaucoma got out of control. I started seeing black spots in front of my eyes and my right eye started to shrink. It was later when I learned that Diabetes causes glaucoma that I put two and two together. I am familiar with surviving a loss. After going blind I still got married, raised kids, got my BA and worked. But it has been challenging being both blind and a type one. I think I could handle it better if it was just one or the other. It’s been a lot of hard work and a lot of tears just to get me to my current A1C. And I don’t know how long I can go on without having a nervous breakdown. Anyway, before this post gets any longer, I am enspired to see so many living with T1D for so many years without complications. I think I have as much as I can handle right now, so will continue to fight.

(pugmom) #84

I have been 50 years this year with T1DM. Have brittle diabetes, but have managed to keep my A1C under 7. Pump user for 11 years and have been complication free so far. (Knock on wood!)

(pugmom) #85

Hello Nannimae,

Sounds like we are in the same line with our diabetes, as I have had T1DM for 50 years. Diagnosed at age 13. I am new to these forums, so excuse any mistakes. I am unaware of low bs also, and most recently came to in the ER while out shopping. :frowning:

I am curious about CGM use, as that is the one thing that I have never tried. Has this saved you from insulin reactions? This would be a God send for me.

(Jdole) #86

Not sure of the exact date of diagnosis, but I do know it was in the summer of 1966, so nearly 50 years. Pumping for 16 of them. Can’t imagine going back to shots.

(Kef1975) #87

32 years. No complications…yet!

(xxgrimhavensxx) #88

27 Years, few complications I take 2 N and 3 R (shots per day). I’ve been dealing with this on my own since it seems like forever, just looking for some support and people who understand how difficult it can be when it seems like nobody is there for you.

(tedquick) #89

I’ve been a Type 1 diabetic for 60 years, diagnosed 4/9/1956. Real rough start, local GP said I had flu and put me on antibiotics. Mom suspected diabetes, since her grandfather and aunt had it, but she didn’t really know much about it. A week later I had such belly pain my parents decided to take me to the ER, where things got worse. First doctor that saw me was a surgeon, and they didn’t take a blood test and urine wasn’t available so he diagnosed me as having appendicitis. So he proceeded to remove it, and I went into DKA coma on the operating table.
In the meantime Dad went looking for a doctor who din’t believe that I could ONLY be diabetic if I was middle aged and overweight… and he found a new pediatrician that had just graduated, so he knew what Juvenile Diabetes (now Type 1) was. Juvenile diabetes was only recognized some 4 years before that, in 1952. As soon as he got there he put me on insulin, and 1050 units later I started coming around. Parents were in my room with the doctor and nurse on a death watch, since I wasn’t expected to ever regain consciousness when I opened my eyes.
Anyway, life for me was very complicated for 7 years until my endo decided to start me using Phenformin (related to Metformin) with medium speed Globin insulin, and I straightened right out. They took that off the market 13 years later, but I was in my 20s be then and found it reasonable to use 2 insulins.
Anyway, enough of my life history.

(ryand89) #90

Just passed my 13 month.

(lawrphil) #91

43 years in June of 2017

(alanpatt) #92

I find it interesting, comforting, educational and inspirational to read the stories - thanks to all those who have posted and hope there will be many more.
For me, just past my 34th “anniversary” - diagnosed at age 18. Been brittle since the beginning but am always told by my endocrinologist that I’m doing “ok” since my A1c range is always 7-7.5 but it sure makes the day to day difficult. About 2/3 of BG readings are “normal range”, 20% are “high” and 10% are “low”. It’s been an exhausting journey averaging a low every day for 34 years! Started the OmniPod 5 years ago after years of MDI treatment. I appreciate the flexibility and like the wireless/tubeless elements compared to other options.
Only other health issues are similar to those many others have stated, i.e. two trigger finger surgeries and have been dealing with two frozen shoulders for much of the last 3 years. Tried physio, cortisone shots, acupuncture and shockwave treatment but nothing seems to help. Any other advice/ideas?? There have also been at least half a dozen times over the years that my parents (at first) and now my wife have had to call 911 as flu-like symptoms have knocked me out but usually a 12-24 hours IV gets me back on my feet.
Agree with others, positive attitude is the trick but it sure gets hard sometimes.

(sneathbupp) #93

6 months. Diagnosed just after this past Thanksgiving at 51. I am on 1 injection of Lantus at bedtime. I bolus with Humalog before meals. I am about to reduce my Lantus from 15 units to 14 or 13 units since my basal needs are changing.

(carl benwon) #94

seven months in September. I lost weight, gained thirst and my eyesight went south. Knowing what I know from our daughter (type 1 about 14 years ago), I had my suspicions. . .

So, to you all going strong for decades - good on you! I know the struggles and uncertainty through my daughter. She’s a bit brittle and has big swings. I see a few swings, but so far, I guess I remain in my honeymoon. Just 17u Lantus once per day.

I do watch what I eat though and quit alcohol over a decade ago. So thankful I don’t try to deal with drinking and diabetes!


(Debbie King) #95

Hello Jan_H. I too am a 52 y/o T1D. Dx’d on my 7th bday in '71. LOL, it was like getting a training bra, cause my older sister had already been dx’d, so it was no big deal to me. I commented on a post on this site that was titled: “It’s been over a decade and I still can’t cope”. Get in touch w me if you wanna: Debbie King Geile on FB. You and I, and many, many others went thru the era of urine testing … that damn chart never did make a whole lot of sense in the reality of what was going on OR how to take care of the “negative/5%” (did “0” mean a B of 30 or 120? and did a 5% mean 200 or 600? Urine sugar results, that’s all we had. Sterilizing our glass syringes, the metal lancets, ketone strips, chem-strips and so on. It still pisses me that an A1C is an average, why have it. hell I could be running 300’s and 100’s and still have an relatively okay A1C. Ah well, kudos to the insulin pump and CGM, no doubt.

(Brooke) #96

Just was diagnosed 2 weeks ago at 32!

(Bruce Johnson) #97

My T1D diagnosis and lifestyle afterwards sounds similar to yours. I was diagnosed in September 1966 and it also did not seem like such a big deal because my younger sister was diagnosed with T1D in 1957. Our entire family had lived with a T1D in the family for over 9 years when I was diagnosed. Today I start each day telling myself that I will not let this disease totally control my lifestyle and ambitions. I find it easier to stay more positive that way.
Unfortunately I live in Canada, but not in one of the three provinces or territories that takes T1D seriously. Just this week I was diagnosed with “hypoglycemic unawareness” by my Diabetes Health Team and my doctor. They are urging me to buy a pump with a CGM monitor c/w the alarms. This would be OK if I lived in one of Canada’s three favoured locations because the health care plans there will pay for the pump and I would only have to pay any difference for the CGM system. Throughout my life I have never worked for an employer where the group health insurance plan would pay for a pump and supplies so therefore have never had the opportunity to try one. I remember years ago when pumps were first being introduced and my diabetes specialist recommending I get one. I even went on several research projects for T1D because the University and Hospital sponsoring the research had promised if you remained with the project for at least one year you would be given an insulin pump as a reward. None of the research projects that promised that ever gave out pumps saying that the research projects had gone over budget as there excuse.
From my experiences I can only advise new T1D’s to take advantage of insulin pump availability as soon as they can. Where I live pumps and supplies are fully paid for by the health care system for any T1D up to the age of 25. In the other three locations I mentioned pumps are supplied to a T1D of any age. My wife and I are talking about moving to one of the preferred areas of Canada so I could get a pump. It makes me feel guilty when we discuss because I am the one with T1D. Other T1D’s in this province put on personal fundraisers using YouTube and other social media to attract the attention of the media in hopes the media will use their story in a newspaper article or on the news. I do not like that idea but may have to look at doing that. You see my wife is disabled and I am her primary caregiver so it is adamant I remain healthy and able to care for her. I spend a lot of time emailing our government officials about the poor health care system for T1D’s. I hope one day it will make a difference.

(June) #98

Type 1 for 43 years no complications. Although slight hypertension but controlled. Like due to the extra weight I’m trying to lose. Joined a kickboxing program a couple months ago - great exercise, stress reliever and helping with the weight loss. Love it!

(sneathbupp) #99

Just shy of 1 yr. Diagnosed just after Thanksgiving last year at age 51. Was hospitalized with DKA. One injection of Lantus (13 units in the summer, 15 units in fall/winter nightly) and Humolog with meals/correction.

(Nancy) #100

Funny, I thought I was unique with T1 for 51 years, but after reading posts in 2009 from Cheryl5026, LarryM, Kristi1967, Jan_H, and Sandmark, I’m now in good company! However, I am still certain that I was the youngest to be dx with T1 - I was 10 months old!

I am a 17-year Minimed pump user with a Dexcom CGMS.

I was treated for peripheral retinopathy (left eye only!) 15 years ago. I’ve had 6 trigger finger release surgeries, carpal tunnel release in both hands, a dupuytren’s contracture ‘rope’ removed from my left hand, and frozen shoulders.

CONGRATULATIONS to all my semi-centurions!