And so it begins

Share My Story
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This may be a long story.
Diagnosed April 4th, 2016. A lot led up to it. Drank too much, ate terrible, treated my body poorly my whole life. Never really thought about diabetes, although a LOT of my family had/has type 1 & 2.
Ok, so the perfect storm…
Had all my wisdom teeth out about a month before. Couldn’t eat much of anything, My stomach hurt all the time. Couldn’t drink alcohol*. (That’s important later). Was working 60+ hours a week. Food service, very physical work. Finally went to the dr because my “stomach” hurt so badly that I couldn’t walk.
Acute, chronic pancreatitis, DKA. I had lost 50 lbs in 3 weeks. Obvi, I had chalked it up to not being able to eat. Fun stuff. Stayed in the ICU for 4 days. Was given a quick lesson in diabetes by the resident CDE. Sent home with a glucometer and a scrip for Lantus.
I felt incredibly guilty, that I had brought this on myself.
Told that, because of my pancreas, I couldn’t eat protein or fat, and because of the diabetes, I couldn’t eat carbs. I ate a lot of naked salads for a few months. Was constantly fasting to keep my pancreas from acting up. Had to quit my job, because I was going mental. Was finally, begrudgingly, put on Zenpep, a pancreatic enzyme.
(While in the ICU, a very large mass was found in my uterus. It was benign, but had to have a hysterectomy in October to make sure. The mass was also putting a lot of pressure on my intestines, and pushing everything into the wrong places)
That’s when I finally met the right GI dr, who put me on enzymes that worked and got me on humalog as well. He explained a lot more about diabetes. He was the first dr who told me that, although my drinking did attribute to my pancreatitis, it also probably saved me from dying.(*At that point, alcohol was probably the only thing that was keeping my BG down). He was the first dr who didn’t seem to blame me for my diabetes. He got me started seeing a CDE (who was AWESOME) and an endo who was meh.
Developed gastroparesis in January 2017 from my stomach being such a mess. Went on Reglan, which, if you know what it does, is not fun with regulating BG. Crazy spikes over 400 as my stomach emptied itself all at once. I am a control freak, and I had my A1C down to 6.2 at this time. Any BG over 150 was a disaster for me.
My pancreas still acted up about every 2 weeks. The only thing I could do was fast until it calmed down. Opiates make me sick, so went on gabapentin, amitriptyline(ugh!) at different times. Quit both, neither worked.
March 2017, had pancreatic surgery, which did not go as planned. Was supposed to be a modified whipple procedure. Partially successful. Turns out my duodenum was wrapped around it, and completely calcified, so they cut out what they could, removed my gall bladder, and kind of rerouted my stomach pathways.
My pancreas hasn’t acted up in over a year. The gastroparesis comes back once in a while, but I just ignore it.
Sometimes my stomach decides it doesn’t want to work, for days. Lime jello has been my savior, because, well, when you can’t digest anything, you can’t take back those 17 units of Tresiba from the night before. I have to bolus conservatively, because sometimes the enzymes don’t work great, or take hours to kick in. I’ve tried tracking it, to no conclusion.

I don’t work anymore, because I’m a workaholic, and don’t know my limits. I feel like a weak little girl if I have to call in sick, or ask for a break, so I just don’t.

I don’t drink alcohol anymore, except for once every year or two, my BFF and I share a beer, and the subsequent 3 day hangover is enough to keep me away from it.

For awhile, I was mad at food. (I used to be a chef, and food is my passion, so this was traumatic.) I’ve learned to love cooking again. Sometimes its healthy, low carb. Sometimes its pizza and eclairs. I love eclairs, and I make literally the best creme patisserie.

I have a very supportive husband, who has shouldered a lot for me. He changed his life because I had to change mine. He loves giving me my Tresiba, helps him feel like he’s helping me. Its much easier to do it myself, but if it makes him feel good…

I’m still learning to accept MY “new normal”. I’m still trying to figure out how to stand up for myself without feeling ashamed. I’m still working on not beating myself up for that one 8.1 A1C a year ago.I’m still trying to decide if I really want a diabetic bracelet tattoo. (I came up with a great design, super gothy)
Yeah, I’m still figuring out a LOT, but I have the time…

Marie :black_heart::black_heart::black_heart:

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It is ok to have a long story, you have had a rough ride, and reading your story is quite interesting because you haven’t taken the most direct path here. It is great that you have a supportive spouse. That is the best thing going in my life as well. I hope my sons find one on their life journey when it is time. Tell me more about the creme patisserie process. I don’t like eating sweets very much so when I make dessert it is usually pretty meh. But I do like eclairs if they aren’t too sweet.

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Eclairs don’t have to be so sweet. I never buy them, after learning how to make them, just for that reason. The creme pat is just a fancy custard, but I like using pretentious French cooking terms. Lots of eggs, cream, not much sugar. Whatever flavorings you like. It takes quite a bit of dedication, as you have to carefully whisk it while its cooking, and get it to just the right consistency. I use Julia Child’s recipe, as it adds a bit of butter at the end for silkiness.

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Thank you for sharing your journey. I always admire and appreciate people who open up to others. It’s not easy for most.

The quotes above were really striking to me. What seems clear from your telling of your story is that you are brave, honest, courageous and resilient. Nothing you have gone through has been any kind of easy or glamorous. It takes a lot to get through that gauntlet of health issues. And to manage them daily now. I respect that very much.

Also, I can relate to your identity shift as a result of the health issues. I was flying corporate jets one day and in diabetes school the next. Grounded from flying but no student loan forgiveness for my crappy pancreas. :woman_facepalming:

I’m glad you’re here. :muscle::heart:

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What sweet, kind words! :heart:
Believe me, it took me a long time to write that. Hours, even. Its not easy to open up to anyone, but people like you and others here make it a lot easier. And I feel its important to share the experiences that mold us, whether we’re currently able to break out of those molds or just trying to not crack them too much.

Life sure throws us some pretty awesome (and by awesome, I mean totally ^#%&&) curveballs, right ?!? :exploding_head:

I’m glad you’re here, too. :partying_face:

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I seriously would not have made it without my husband’s support. I’m grateful every day that he puts up with me. I think he mainly sticks around for the food. :laughing:

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If he is like most men, it is the food or one other thing. Seeing as my wife is looking over my shoulder I will posit, it is because of your food and/or your car.

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That story describes me about ten years ago. Except for the uterus parts. My doctors have had me on a massive amount of Creon (a pancrelipase drug). Thanks for mentioning Zenpep. I had never heard of it and my GI doctors tell me that Creon is my only option. My insurance paid $27,000 for it last year and I am not looking forward to seeing if Medicare will pay for it when I go on the plan in a couple of years.

It does get better.

You will learn what your body can tolerate with experience. I can eat just about anything I want, though Pizza really does a number on my BG. We also have an occasional ice cream dessert.

My endo is more interested in my “time in range” from my Dexcom reports.

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Thanx for reading, and writing. Another 3c! (I like that we have a real label, although in my youth I would’ve hated it!)
Hmm, haven’t tried Creon. On the highest strength Viokace now. 3 with each meal, 1 or 2 with each snack. It definitely works better than Zenpep. The major difference is you need to be on a PPI as well. And the pills are huge. This summer, with all the craziness going on, I had a different dr, and she wrote the scrip for 4 a day, instead of 12. Imagine expecting the usual 1080 for a 90 day supply, and getting 360!
Luckily, when our insurance quit using Caremark and switched to Express Scripts, our drug costs went down. I hope Medicare doesn’t make you change what works for you!

Pizza totally depends on the place for me. Even thin crust, at different shops. Perhaps the amount of oil used in the dough? Some takes up to 6 hrs for me to digest. I’ve learned to take bits of humalog at a time, and only have it for lunch, so I can monitor it. And I definitely still eat ice cream, but now I opt for super premium yumminess, none of that “frozen dairy dessert” for me! If I’m taking a handful of pills, it better be worth it! And bacon is my favorite food group, but that takes extra pills. I do miss being able to have leisurely meals. Viokace works best within 15 minutes, so gone are the days of 6 course meals. I used to love 2 hour tasting menus…

The time in range thing is recent for me, as I went 2 1/2 years without an endo. I understand why its important, but, geez, way to put more pressure on us! :laughing:

Way too many exclamation points in this. I tend to write long, drawn-out replies.

Marie

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I just went online through y pharmacy to compare Medicare Part-B plans. Most of them do cover Creon, but until this thread, I had not heard of Zenpep or Viokace.
I take 40 pills a day (24 Creon, and a mix of other stuff). My wife can’t stand that I can take them ‘dry’, with nothing to wash them down. She gags just watching me pop a handful into my mouth and swallow them. (Funny story- I once had a camera pill colonoscopy. The nurse handed me a cup with the camera pill in it and she said “swallow this”. She then turned to get a cup of water and when she turned back to me she asked “where is it?”. I swallowed it. Was I supposed to wait for water?

Pizza- Restaurant pizza is way, way too much in carbs for me. We like DiGornio thin crust. I usually have 3/8 of a pizza and shoot insulin appropriately.

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You have more self control than I.

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@Mariethm, your amazing story showed so much resilience, and also humility!

Through all of our vicissitudes, getting to a point where all is, if not solved, at least accounted for, to me, appears like a great victory. It seems that you are in that place. I am so impressed by your attitude and by where you have arrived from where you came!

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Had to look that one up!!

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Hey @mariethm! Your road is, in some ways, similar to mine. At one point I was told “no fat, no carbs, no salt, and no residue” for a diet which means…baked chicken breasts and not much else. I, er, mostly ignore this and deal with the consequences. (I do try to keep the sodium on the low end of things.)

I didn’t get diagnosed with diabetes until a year after my pancreas problems started–mine went necrotic, do not recommend–but was on digestive enzymes from the time I was finally discharged from the hospital. The “education” I got around diabetes was a joke and involved worksheets and the assumption that I was stupid.

I’m at a point where I’ve got pretty good control and my endo’s office is very happy with my time in range from my Dexcom reports. They’re putting me in for an insulin pump–the Tandem t:slim–and I’m really looking forward to being able to offload some of the cognitive load around being hypervigilant with my blood sugars so I can better deal with some of the other fun things that come along with being 3c.

Also, it’s so sad when you’re excited that you don’t have to explain to a healthcare provider what t3c is because one of her family members has it. If your endo is anything like mine, they’ve got you classified as t1 so insurance will cover things. Which is bullshit garbage, but that’s the US healthcare system for you.

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MP says I deserve your scorn for using that word :slight_smile:

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Show off.

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It’s a good word, 13/10 would read it again.

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I nominate it for word of the day, nay, dare I say it, word of 2020!

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Wow. Just wow. You have been through so much and you continue trudging along, chin up and sparkle in your eye. I learned something new today reading this thread, and will do some research to appease my curiosity. You GO GIRL!! :heart:

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Hey @eilatan!
First off, thanx for reading, and writing. I always get a little excited when meeting another 3c, then I get sad that they are dealing with it as well.
Yes, the US healthcare sucks. It took me forever to get a CGM, because my first endo couldn’t figure out what type my D is. I’ve been trying to use “3c” as much as possible with drs, so it’ll become a common term. Not surprisingly, my GI dr was the first to tell me about the new term.

I’m debating getting a pump, I guess it depends on finding a new endo first. I hate feeling like product is being pushed on me, so I get very resistant about new things.

Its awesome that you have such good control! Especially with the “education” you got. I tried to do the “exchanges”, as I was taught, but, really, who wants to measure a freaking plate every meal! :exploding_head: I tend to get burnt out with dietary management, so have to focus on exercise a lot more. The snow here yesterday is testing my resolve.

Did you have surgery on your pancreas, gallbladder, etc yet?

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