Think back to when you were first diagnosed with diabetes. Whether it was just the other day or decades ago. Once the buzzing in your head stopped and you are simply trying to put the pieces together. What were the first two things you realized that you needed to know and understand? And then, how long did it take you to find the information you needed?
Two seemingly simple questions with an uncountable number of answers. I’m really interested in hearing what everyone else went through at that time. Those first few days and weeks. As we know there are many many things to understand about diabetes. But what were those first two big challenges for you?
I think that the many varied answers to these questions would be particularly helpful to folks when they first arrive here at TU Diabetes. I know for myself this was my first and best resource for those answers and it is still at the top of my list. Please join in and add your personal experience to the conversation.
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In the beginning was the Word…and was there ever the word. I came home full of shame clutching masses of information giving leaflets, most of which ended up in the bin. How could I have diabetes, me who had been so careful to follow dietary recommendations for all of my adult life. The tablets made me feel ill, the high carb low fat diet was tasteless, I had an unsympathetic CDE who thought I was non compliant. My local GP and the diabetes doctor were African and my CDE was Burmese and being very deaf I had difficulty understanding them. A totally confusing time. Research on internet did not help, reliable websites stressed low fat, high carb and my numbers would not come down. Then I found a low carb site and very afraid I began to experiment. It is so hard to change your way of eating without any medical recommendation. Especially regarding butter! and real milk! It all seemed so upside down.
I would really, really appreciate being able to talk honestly to medical people about how I eat, it would make life so much easier. And we are back to words…
Without a doubt my very first concern was how do I eat. I really had no idea. I had no real understanding of diabetes, but I knew I couldn’t eat a donut and coffee for breakfast every day any longer. My second question involved the likelihood that I could reverse the complications which I already had by the time I was diagnosed.
I soon realized that the answer to my first question about eating was totally up to me. The advice I got from the CDE and ADA did not really make sense to me nor did they provide the outcome I wanted. Since I had some knowledge of low-carb eating I chose that path within the first month and have since adopted my own version permanently.
It turned out that I also had to provide the answer to my second question. All of my doctors, along with every other health provider I checked with, offered little or no hope that I might reverse any of this. The best they could say was “control your blood sugar” and maybe they will stop progressing, but I could probably never expect to reverse them. So I did. I figured out what normal blood sugar should be and made that my goal. My A1c reflects that even if my numbers don’t always agree with it. And, the result is that all of my complications are much improved. None of them are gone. But they are more of a nuisance than a threat now days.
I was 28, still in grad school, Dec. 1983. I was kind of expecting it because at first we couldn’t make any sense of what was going on with me but then my wife spoke to my MIL, who worked in the medical realm, and she said “sounds like diabetes, get that boy to a doctor.” Whole process from feeling fine to getting dx’d was about 3 weeks. By then I was having pretty acute pre-DKA symptoms, not vomiting yet but incessant and increasing nausea plus the peeing, crazy thirst, all the rest of it. So anyway I kinda knew at that point. You don’t forget the first thing they say, if you’re old enough. “Well, you’re the proud owner of juvenile diabetes” was exactly how the Dr put it (they still used the term ‘juvenile’ back then) and followed up with “Probably your wife wouldn’t have been able to wake you in the morning if she hadn’t brought you in this afternoon.” Handed me a hypodermic full of insulin and said “You might as well start getting used to doing this right now.” That was a bit of a shock, but well, ok, here goes… Took my first shot in my upper thigh.
It was so different then that I’m not sure what I experienced is much use to anyone now, except maybe by contrast. Pamphlets with pix of smiling old folks on bikes (“Mature” onset–T2–was still the predominant form and very much associated with middle age or older). It was kind of a transitional time: R & NPH insulin, porcine or bovine, an improvement over what came before but at best a rough approximation of a real basal-bolus regime. Home testing was a thing, but you had to match colors on the strip to swatches on the tube the strips came in, in increments of 40 units. Carb counting? Not as such: instead, food exchanges! If you wanted an apple slice you traded a chunk of cheese or some damn thing–I don’t remember the details and I never really got it right anyway. You basically only injected once a day (both insulins mixed together–some people injected twice a day) and then tried to calculate time and food you’re eating all around what the shot was theoretically going to do (Eat Now Or Die, as I used to call it).
Other than that, the big standout memory as to what my new life was all about came maybe for or five days after starting on insulin. My first hypo! There should be a Hallmark card for that, doncha think? I’d formed this impression all on my own that whatever they said about that, how bad could it be really? I kinda figured it was like those “may cause drowsiness” warnings on OTC medicine. They always exaggerate these things to cover their butt, right? I recall I’d gone down for a nap, and I was still in the fighting-to-get-the-damn-bg-down phase up to that point, and when I woke up… Fortunately we had OJ in the fridge.
This is kinda how I feel. In many ways, diabetes seems like an entirely different disease today than it did 25 years ago. Plus, I was a kid, so my diagnosis experience was very different from many here.
In the beginning there was a special doctor who helped a clueless new t2 with an A1c of 12.0 to understand. She said that she could give me pills, but the rest was up to me. She connected me with a great diabetes education program. Now 7 years out, no meds A1c of 5.6
In the beginning she gave me hope and direction.
I was diagnosed in first weeks of pregnancy. Sent to a dietician who told me to eat 240 g of carbs /day (More than I’d ever eaten in my life - even while training for Ironman, which I’d completed 6 months earlier). Fortunately i was obstinate enough to ignore her. And first lesson - medical professionals are not always right. 2 months later my endo stated me on mixed insulin, his nurse showed me how to inject and i was sent on my way. No diabetes education at all though i was given a brochure and asked to record sugars. Anyway the mixed got me to the end of my pregnancy when, while vacationing in China, i did not eat soon enough after dosing (was busy packing), and i collapsed in the hotel lobby, and next thing i woke up in a Chinese hospital emergency room. I didn’t even know one could go unconscious from a hypo. Baby and i ended up fine. However that event triggered my research mania. I discovered Bernstein. So it took about 8 months for me to learn the must critical info.
Lesson no 2. Quality Diabetes education is invaluable.
After delivery my endo told me i would no longer have diabetes and i could stop insulin and we’d do a glucose tolerance test in 3 months. I ignored him and kept testing and realised i still needed insulin if i wanted blood sugars meeting Bernstein standard.
I changed my insulin to basal-bolus and kept on.
Lesson no 3. As pwd we need to be our own advocates and also making our own medical decisions. Maybe I’ve taken that to the extreme in that i predominantly self manage - but that works for me.
What is a carbohydrate? Everyone else focuses on calories or sugar. My first CDE explained that eating bread, corn, and peas equaled eating 3 starches (not a starch and 2 vegetables).
The second question is harder: What is going wrong rather than What did I do wrong. Chemically. Physiologically. Scientifically. Technologically. This isn’t about Blame vs Responsibility. It’s reality.
My diagnosis was only 9 short months ago at the age of 41 in the ER. I had all the classic type 1 symptoms last summer (extreme thirst, increased bathroom visits, sweating, exhausted, confused, 20 pounds lost) but I passed them off as just the result of an active, hot summer. I was first diagnosed by my PCP with type 2 after ER episode - I’m guessing because of my age. I was given a stack of brochures and pamphlets, some metformin, a starter bs test kit and a referral to diabetes education classes. My PCP never gave me a target bs range - I think she just counted on the diabetes nurse educator for that. Then I Went on to see an endo in January who confirmed type 1. He has yet to give me a target bs range either - I think he thought my PCP had done that. It’s all been so confusing and crazy. I see him again on Monday and I have almost an entire notebook page full of questions. Ha!
My older brother’s story is almost identical to mine only he was 37 at diagnosis and his son was diagnosed at the age of 2. So, I was no stranger to type1 diabetes and insisted on the referral to the endo. Thank goodness. However, right now I’m honeymooning and sailing along pretty good as far as I can tell (we’ll see if my A1c agrees though). I just wish there was some way to tell how long the honeymoon will last - because, lets face it, its no honeymoon!!
I would like to keep my blood sugar as close to that of a non-diabetic as possible. However, I still need to know what my Endo views as a healthy bs range for me because I’ll end up obsessing over it. For example, I mentioned to my brother that I was high after dinner the other night. I was 238. His comment was “well, that’s not high enough to worry about. 400 is when you start to worry”. Now, 238 is unacceptable to me and it consumed my thoughts all evening…BUT, I wondered…Is my brother right? would my endo think 238 is too high? am I being obsessive?..
p.s. I’m not on insulin yet (that’s another story). I’m sure I will be once I see the endo again on Monday and I’m ready for it.
I found out that I had diabetes when drifting in and out of consciousness I looked up and saw the insulin drip attached to me in the hospital. I didn’t mind it in that moment because I had been so ill for such a long time that anything that was not death was comforting to me. I was also happy to know that nobody would call me a bulimic anymore due to my emaciated appearance or offer me doughnuts to see if I would eat them. Then the pain from my neuropathy set in and I became angry: my first question was why I had been dismissed by medical professionals that I sought out during the three years leading up. The answer to that is immaterial to me now. My second question was if the nerve damage could reverse. Nobody could answer this because it depended on my D management.
A1C is a useful comparator just to get a general idea about this kind of thing. I wouldn’t freak out about a transient 240 as a post-prandial–emphasis on transient—if I’d just miscalculated and/or didn’t have time to pre-bolus, on the assumption that either the insulin is going to catch up and pull it down, or if it seems stuck up there I’ll do a correction to bring it down. But you say you’re not on insulin yet, which leads me to assume you’re up in that range in a more sustained way. If you’re averaging 200-240, that translates to an A1C in the 8-9 range. Certainly would be unacceptable to me. I generally run 6-6.5, and there are others here who pride themselves on keeping it under 6. Endos don’t like to see it too low for people on insulin because they think it indicates you’re having too many hypos, but on low carb diets with a CGM and a well schooled T1, 5’s are not unreasonable. They definitely don’t want to see you over 7.
Yes, a relief to know what was wrong with me and also disbelief! But I was so exhausted that I don’t think I had the mental energy to ask good questions. In hindsight, though, I wish I’d asked about the process for adjusting meds over time as I recovered (I had too many hypos) and for a referral to a counselor with experience helping newly diagnosed PWDs come to terms with their diagnosis.
“Diabetes seems like an entirely different disease today than it did 25 years ago. Plus, I was a kid, so my diagnosis experience was very different from many here.” Jen is right, but I’ll double that. I was diagnosed 50 years ago, at age 12. My blood sugar was over 600; the doctor marveled that I was still standing. That being said, we ALL knew little of the disease, and what they told me to do then astounds me today. We have learned so much!
I would tell a newly diagnosed diabetic to learn two things: what is a carbohydrate, and how does that carbohydrate affect me personally? Every diabetic is different, and we all need to learn how we individually react to not only food, but also exercise, stress, and illnesses. I would advise people to get a good endocrinologist rather that having a GP try to teach you control. In the end, each person must be responsible for his/her own choices, health, and consequences. My endo and I have worked many years together, and I have educated myself both to what diabetes is and to how it personally affects me. After 50 years, I have been blessed by having very few complications. I keep my weight in the “normal” range, I eat balanced, nutritious food, I understand how insulin affects my blood sugar, and I exercise each day. Is it work? Sure. Does good control mean awareness? Absolutely. But I don’t make a big deal of my diabetes, and people know me for me, not for a medical condition I happen to work with each day of my life.
“Diabetes seems like an entirely different disease today than it did 25 years ago. Plus, I was a kid, so my diagnosis experience was very different from many here.” Jen is right, but I’ll double that. I was diagnosed 50 years ago, at age 12. My blood sugar was over 600; the doctor marveled that I was still standing. That being said, we ALL knew little of the disease, and what they told me to do then astounds me today. We have learned so much!
I would tell a newly diagnosed diabetic to learn two things: what is a carbohydrate, and how does that carbohydrate affect me personally? Every diabetic is different, and we all need to learn how we individually react to not only food, but also exercise, stress, and illnesses. I would advise people to get a good endocrinologist rather that having a GP try to teach you control. In the end, each person must be responsible for his/her own choices, health, and consequences. My endo and I have worked many years together, and I have educated myself both to what diabetes is and to how it personally affects me. After 50 years, I have been blessed by having very few complications. I keep my weight in the “normal” range, I eat balanced, nutritious food, I understand how insulin affects my blood sugar, and I exercise each day. Is it work? Sure. Does good control mean awareness? Absolutely. But I don’t make a big deal of my diabetes, and people know me for me, not for a medical condition I happen to work with each day of my life.
The reason I copied SherryAnn’s reply is that it is right on.
My first thing was is the shot going to hurt, it didn’t (this was the time of 12 Gauge needles not like the current 30 gauge plus).
2nd; So this is it, I can’t eat sugar/candy (we’re talking early seventies) no big deal.
Lived with it ever since 46 years ago and never, ever let it rule my life or keep me down.
