Diabetes "Coming Out" Stories

Community
1

Since being diagnosed with diabetes is a really big deal, I’d be interested to start a list of our “Coming Out” stories (e.g. what’s the story of your diagnosis?). Anyone else? Here’s mine, as stored in what was, at the time, my 3-year-old brain:

I lost my sense of taste, and refused to eat my dinner. I was already a really skinny kid. My mom tried to tempt me with chocolate pudding (usually a sure-thing), but that was nothing more than paste in my mouth, too. At some point soon after, when mom was making dinner on some other day, she got a phone call that scared her. She called my dad at work and told him she was taking me to the hospital. He should meet us there. I have no idea how long a stayed in the hospital, but I do remember that I really liked the mac-n-cheese from the cafeteria. I also remember that one day I was served a giant hunk of chocolate cake with lunch, and my parents said they weren’t sure but thought that was a bad idea (forget the fact that NO ONE needs chocolate cake with lunch). Some family friends sent me a stuffed animal that looked like a green bell pepper with arms and legs.

… And that’s all I’ve retained. The rest is just my regular life as a diabetic.

I’d love to read other people’s stories, whether recent or in the distant past!

2

I love reading the world as seen by children. Nothing so picturesque in my diagnosis. I was 58; for a couple months I had been peeing a lot and drinking a lot which I knew were symptoms of diabetes. I’d also been losing weight, a couple pounds a week without trying at all. I was 40 pounds overweight so I liked this even though it was strange when weight is so hard to lose at my age! I looked up to see if weight loss could be a symptom of diabetes too and when I saw it could I called my doctor and asked for a blood test, knowing what we’d find. My fasting was 325. I didn’t know what the number meant, but just said, “so I have diabetes?” I was retiring and moving to Guatemala in a month so I had a hurried visit or two with my doctor and a educator (I think). They might have said Type 2, or else they just said “diabetes”, I don’t remember. I had heard that “diabetics” could go for decades without needing insulin so at age 58 wasn’t very concerned. I figured I’d just take a couple pills and all would be well. Which it basically was. I told the dietician/educator that “I ate very healthy and I hadn’t eaten sugar in 13 years”. She said, that’s good, no need to change anything and didn’t bother asking if, as a vegetarian I ate a lot of pasta and rice. (I did). But my numbers were good anyway with the pills for 15 months.

Fast forward 15 months later and my numbers started climbing. My doctor trying switching or adding meds but it just kept going up. By the 20 month point I knew I needed insulin but didn’t know why. My doctor started me on a reasonable dose for a type 2 and I kept crashing and having to reduce it. Something wasn’t right. So I started reading everything I could find and then I figured it out. I wasn’t a Type 2 at all, but a LADA/Type 1. Oh yes, and by then I’d lost all of the 40 pounds. Because of those experiences I’m very comfortable controlling my own regimen and only see a PCP for prescriptions. I started insulin in 2/09 and got my pump in 1/11. There are definitely more dramatic stories but I think mine is typical for a Type 1 with an adult onset.

3

Zoe, you left a cliffhanger! Did you move to Guatemala? Did the diagnosis effect that plan in any way?

4

Oops, sorry, Emily…I was trying not to put my whole life story into the post…lol. Yes, I did move to Guatemala. That plan was definitely in place by that time and I didn’t see anything about the diagnosis to interfere. My doctor in Guatemala didn’t have any clue about my actual Type, but then neither had my doctor in California! I’d already figured it out myself by the time I went to see an endo in Guatemala City. She had never heard of LADA, but just went over my 5 point check list and nodded and said “you are type 1”. I like to include that checklist for others who may be unsure of their type. It’s: 1. Lost 40 pounds at diagnosis to be at normal weight, 2. Very insulin sensitive, 3. low c-peptide, 4. short time from diagnosis till needed insulin and 5. had another autoimmune condition. (Graves thyroid).

I lived in Guatemala for two years, and moved back to California for two years ago not due to diabetes, though I did have to pay over the counter costs for all my meds there rather than use my insurance like I do here. Thanks for asking!

6

Mine became really long as I was writing it, so I made it into a blog post:

http://www.tudiabetes.org/profiles/blogs/diagnosis-story-1

7

I never post my email, it is an invitation to get Viagra spam.

8

I developed diabetes at 16 and was diagnosed at 17. In February I was losing weight and feeling a little more tired than usual. My mom noticed I had a lump on my neck one day and freaked out (family history of thyroid cancer). I went to the doctor, and, after a series of blood tests/ultrasound, found out that I had Hashimoto’s hypothyroidism. I started seeing an endo for it, who put me on Synthroid, and sent me on my way.



Then I kept losing weight. I thought that it was my thyroid levels/metabolism getting back on track. I wasn’t really overweight to begin with, but was never a real skinny person. Suddenly, I had to start buying new clothes and kept feeling really run down. I remember falling asleep in all of my classes. I fell asleep wherever I sat. I remember sleeping at track meets even between my events. I figured it was from being a “typical” teenager staying up too late and running around too much, so I didn’t really think anything of it. I was also really really thirsty all of the time. Of course, I would drink lots of milk and OJ, since that’s all we ever had to drink at home. At school, I would chug gatorades or go to the 7-11 for slurpees. I also had to pee ALL of the time. Sometimes 1-2 times per class, annoying my teachers endlessly. I remember driving around with friends at night and having to stop to pee every other second. I would literally be running to the bathroom and it’s a miracle I never wet my pants! I would get debilitating leg cramps, especially at night or when I was exercising.



Then one day I was at a regular endo appointment for my thyroid and saw a poster on the wall explaining all of the symptoms of diabetes. I checked them off one by one as things I was experiencing at the time. I told my mom that I thought I had diabetes. When the doctor came in, he said my fasting BG on my labs was a little high (I don’t remember the value) and that I had diabetes. I was put on 15 units of Lantus every night and sent to a CDE to teach me how to give injections.



All I remember about my training was that I should inject at a 45 degree angle in my belly and that they told me about portion control. When I got home that night, my meter said “H1” and me and mom weren’t sure what that meant. We called the meter company (I think it was accuchek) and they called us back 2 days later and said it meant that my BG was over 600 (or High, as in that’s higher than the meter can read!!) and that I should probably go to the ER. I think my mom yelled at a few people since I hadn’t known that and already brought it down on my own. I remember feeling better right away. One day within a week or so after Dx my mom called me out of school and I had to go on humalog too, but I was never given any dosage instructions. My endo just said that I would “figure it out” with trial and error and that I could still do sports, which was all I cared about at the time. He said I should eat candy before a game or hard workout and that I should not get pregnant unless I’ve had 3 consecutive months of perfect blood sugars.



It’s a miracle I am still alive today, lol. No education about carb ratios/counting, or even exchanges for that matter! I could have killed myself! I didn’t know anything about diabetes until I moved to Boston and started going to Joslin clinic where they had classes.

9

I started having symptoms of diabetes in 2004. Had been on steroids because of a wasp sting and anaphylactic shock for some time and when I was on these I put on quite a bit of weight as you do. Then I stopped them. Then I started losing, and losing …, had the tiredness, blurred vision, thirst etc but nobody picked it up! I went from 14 stones to 5 1/2 very rapidly and looked like someone coming from a concentration camp! I was breathless, my legs were heavy etc. (Now I know I was full of ketones!)

I had to go into hospital for severe, and I mean severe stomach pains - which turned out to be due to a tumour on my pancreas which thankfully was benign but was pressing on the bottom of my stomach and pushing it up through a hole in my diaphragm. They also found another on my pancreas - which thinking back I had known about for years but had not given it much thought. Pre-diabetes I had had exceptionally low blood sugars and in England they would not investigate so I went home to Latvia (then still under communism and the hospitals were dire) and was found to have this benign tumour and “enlarged spleen”.

Well, I had pioneering surgery on my spleen tumour - I was the first in the world to be treated in the way that I was - first time without anaesthetic which was extremely painful. Second time they put me out. It was a success and though it took some weeks to recover in hospital, it was wonderful to be pain free for a while! They could not reach the pancreas tumour because it is situated behind my liver and they would have had to go through that - causing possible fatal bleeding.

I was restless sometimes while in hospital (total 8 weeks) and would go for a walk. It was at 3 am one morning that they asked me if I needed help for my “problem”. I asked what problem and they said your drink problem. Whaat??? I had just had abdominal surgery, the nearest shop that would sell alcohol was 1 1/2 miles away, I was on a drip, it was 3 am and the only person I saw was a porter taking a body to the morgue - where was I going to get alcohol from? And why?

I remained in the hospital as I said for 8 weeks - totally missed Easter and spring that year! They were about to let me out when they decided to do another blood test (one of hundreds!). The next day they came to me and said that I was Type 2 diabetic (WROOOONG!!) and I swore (which I do not usually do!) as I am totally phobic about needles and the thought of sticking needles in myself was (still is) abhorrent. I was kept in another 2 weeks and then sent home with tablets.

My general doctor was sympathetic but has never discussed diabetes with me. She sees me coming into the surgery and says “I am not discussing diabetes. I hope there is something else wrong!”

I had two cases of DKA ending in hospital (again with accusations of having had too much to drink! - interesting that, my poison of choice would have been vodka which has no smell!). On the second of those occassions the doctors in the hospital asked me why I had not been taking my insulin? Er, because it has not been prescribed and I am Type 2. He said that I was definitely type 1 and should be using insulin. They gave me insulin on a drip and left me - and I went hypo!! First indication that human insulin does not cut it with me!

Looking at your description - about the loss of taste etc, perhaps yours was triggered by a cold or virus.

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E-mail? What me worry? LOL.

11

The one memory that I still have to this day was after I was diagnosed but prior to going to the hospital, my mom took me and my brother to Dairy Queen. At the time I really had no clue, but I was pretty excited since we rarely went to Dairy Queen. To this day, my brother and I still laugh about it. We say it was my mom’s way of giving me “Last Rites” prior to living life with diabetes. I think it was the only Banana Split I have ever had. Kind of a fun memory to have.

12

I prefer Bacon Spam.

13

Ewwwwww. Between mail spam and the food spam I’ll definitely take the former!

14

You need the story of the aged to balance this out.
At 71 on a Thursday morning in late March, I was standing in front of the sink when I realized I was on my third glass of water. I went out to CVS within a couple hours, got some urine strips (cheap is good!), and said, Yes. I had had no warning, no prior thirst, etc.
I didn’t say anything to the husband-MD who I was driving from FL to IL within the next 3 days. I just didn’t eat carbs.
I told him Sunday night we got home, and Monday a.m. I was at a hospital lab & a doctor’s office. Monday afternoon I was with a dietitian (whose plan was turned down before it got a chance to ruin my budding control).

15

At age 13, I remember coming back from a family vacation and having to urinate frequently. I remember having to use a jar because no bathroom was available and the parents didn’t want to stop every five minutes. I remember the OGGT and having to drink glucola. I remember my mom talking and the phone and then she started crying. Next thing, I remember my dad saying “welcome to the club.” He was T1 also. My sister followed the next year with T1.

16

It was a long time ago - 1957 and I was 6. i remembered I was very skinny and thirsty and going to the bathroom all the time. I spent about a month in the hospital and received injections every day. I thought once I left, the injections would be over. Not to be. I did not have the “luxury” of using disposable syringes, pumps, blood glucose meters but rather clinitest tablets that were dissolved in a test tube full of urine, glass syringes and steel needles that were stored in an alcoholic bath and boiled every week. Diabetes is no fun at any time but we certainly have it much better now with all the technology than back when I was diagnosed.

17

I remember those tablets test tubes of urine! It was like some crazy chemistry experiment, with fizzing and colors. The hospital gave my folks a plastic urine collector that was inserted into the toilet and shaped kind of like a cowboy hat. We called it “The Hat”. Every Wednesday morning my dad would take me to the local clinic for a blood draw, and then to McDonalds for breakfast as my reward. It’s been a VERY long time since McDonalds pancakes and sausage seemed like a treat to me! But I remember those breakfasts very fondly.

I was lucky to be diagnosed after the age of disposable syringes had begun, though. I know a woman who was diagnosed around the same time as you, Doug, and she’s told me stories about her glass syringes rolling off the counter and shattering on the floor. Indeed, we’ve come a long way :slight_smile:

18

Wow. You’re one very busy family. I’m the only diabetic in my family, with the exception of one very distant cousin whom I don’t know, but hear is in terrible shape.

19

I was diagnosed in 1991—thankfully when glucose meters had been around for a few years already—and I remember using one of those “hats” in the hospital so they could check for ketones. Glad I never had to use it on a daily basis, though!

20

All I remember was loosing a lot of weight, drinking all the time and recycling the drinks on a regular basis. I went to the doctor for something else and on a follow-up visit he said that I had diabetes. I said: “oh.” From the doctor’s office, I went and got a cheeseburger and a Milky Way to eat. I continued to by seeing an endocrinologist a CDE and a nutritionist,; noticing the following problems; The Endo couldn’t speak English, the CDE was a b**ch and the nutritionist cried. I really didn’t care.

Fast froward, I have a good endo, a wonderful CDE and a nutritionist who gets it. I take far better care of myself, and my pump arrives this week.

I still believe that a cheeseburger, vanilla ice cream and a Milky Way are three of nature’s most perfect foods.