You are not alone, James!
I was misdiagnosed as Type 2 when I was 32, just after my daughter was born.
My wife was the only one who understood what I was going through because she had just had Gestational Diabetes during the pregnancy (I now joke that I got post-gestational diabetes
but everyone else would tell me āitās from all the gummy bears you ate in college!ā or āI heard coconut oil can cure your diabetesā or āeat a bunch of cinnamon!ā
I asked multiple doctors to test me for Type 1 (Iām 6ā tall and weight ~165 lbs!) but all of them told me āItās an expensive test and I am certain you have Type 2āā¦ every single one of them!
After a year and half of trying Metformin + Glyburide to no avail, I finally talked to an endocrinologist over the phone and the first thing he told me was ālooking at your chart, I want to test you for Type 1ā
My entire life Iāve only ever been afraid of 2 things: spiders and needlesā¦ so the whole insulin thing was terrifying for me.
When my poor wife had GD, I couldnāt even help her inject (she had to do it herself in her big belly, I was so useless!)ā¦ so I always tell her āthis is what I get for being such a bad husband when you had diabetes!ā
I remember when I tried to inject my first flexpen in my stomachā¦ I just sat there and my arm wouldnāt do itā¦ it was just impossible for me to stab myself with a needle!
Luckily, I am now only afraid of spiders but what helped me the most was seeing Manny Hernandez give a talk at a Joslin Diabetes summit I presented at.
He said something like this: āmost doctors donāt know anything about LADA, so I wanted to create a place where those with experience could help othersā¦ thatās when I created TuDiabetesā
As soon as I flew back home to Seattle, I joined this amazing website and also found a Diabetes Happy Hour that met about once a month.
It changed my lifeā¦ thanks to these two amazing resources, I switched to an insulin pump, I got a Dexcom G4 CGM, and realized that I can still do most of the activities that I lovedā¦ because I would meet people that were on the rowing team with Type 1.5 (they just used the waterproof Animas pump) or ran marathons!
Suddenly playing ultimate frisbee and soccer again, didnāt seem so impossible!
And this websiteā¦ wow, every single question I had about pumping or my Dexcom was answeredā¦ every time!
I was going crazy when I was forced to upgrade to Windows 8 and my Dexcom software would no longer work (so I couldnāt send the data to the CDE that was helping me set all my complicated basal rates and carb ratios).
A hero from Microsoft in Seattle posted a solution to the problem here on TuDiabetes, by writing a program to circumvent the issueā¦ a year later Dexcom finally had an update for Windows 8ā¦ still not for Macs though! (and after typing that, I just noticed they have a new program for Macs: Dexcom Clarity | Diabetes Management Software | Dexcom ā¦nice!)
Donāt give upā¦ as Terry4 pointed out: life is very hard at our age (Iām 38 now and feel like Iām going through a midlife crisis!) and diabetes doesnāt make any of it easier, but you have a community of friends that want to help you!
I used to be super active on this site until a new job made that infeasible, someday soon I hope to be able to make it my home page againā¦ but I canāt say enough good things about the people here.
Lastly, I would recommend trying to find a diabetes Happy Hour or support group in your areaā¦ and if you canāt find one, why not start one up!?