FUDiabetes

My Diagnosis Story

We were in the UK in July 2014 on a family trip for our daughter’s wedding and the weather was hotter than normal. I was drinking lots of water and kept telling my husband that my mouth felt so dry. We were walking a lot more than usual and I attributed the leg cramps to that (and bought potassium and magnesium supplements). I was having trouble reading maps and thinking clearly–not at all like my usual self. I felt tired but just kept pushing through as much as possible–after all, I was responsible for organizing the trip and keeping track of everyone, right? Somehow I made it through all the festivities but my energy level was low and I feel like I look very tired in the photos–more than the mother-of-the-bride should! After the wedding several of us continued on up to York for some down time before heading home. I felt a bit more rested but not very lively. I was really starting to worry about what was wrong with me. And I remember thinking as I walked down the jetway to board the home-bound plane that I was dying. Guess what? I was!

When we got home I just felt worse and worse and all of a sudden the pounds just started dropping away. My husband took me to the hospital, later telling me that he thought I was dying of cancer. However, it turned out that I was DKA (A1C of 15 percent) and diagnosed with adult-onset Type 1 diabetes. I felt and looked like a zombie and the nursing staff were all amazed that I had walked into hospital under my own (last bit) of power. I spent the next few days on insulin drips, sleeping or peeing between constant blood glucose checks. When I came to, so to speak, my diabetes education began in earnest. At first I was just plain bewildered and disbelieving. Then the anger and depression broke through, also feelings of shock, betrayal, confusion, hopelessness, and… relief that I was still alive. I was scared to death of giving myself shots but I had to learn in order to go home. Thank goodness the CDE was so patient and understanding!

Those first few weeks back at home were totally awful. I was exhausted and frail, had only the most basic knowledge of counting carbohydrates, and experienced scary high and low BGs. My vision got worse before it got better and I felt hungry all the time. I cried a lot and felt myself sliding into depression. I felt scared about my future and unable to cope with all the changes. I’m guessing many newly-diagnosed adult T1s work their way through a lot of the same stuff and also feel quite lost and disoriented. Thank goodness for my husband, who was a real trooper and life-saver: he did the shopping, prepared meals, walked with me in the neighborhood to build up strength, drove me to appointments, and listened patiently while I railed against my fate and cried on his shoulder. My friends were also very supportive and worked hard to understand what I was going through, and I drew a lot of comfort from the companionship of my cats (and still do–one is asleep on my lap while I write).

Anyway, I came home from the hospital with prescriptions for Humalog, Lantus, and Metformin. Titrating up to the full dose of Metformin was very unpleasant but as my dose went up, I used less Lantus. I think that my real recovery started a few weeks later when I talked to my CDE about the on-going post-meal spikes, which the sliding scale Humalog boluses didn’t resolve. She talked with my doctor and got me started on meal-time boluses. The members of the ADA online community directed me to “Think Like a Pancreas” and “Using Insulin” and I learned about the importance of timing of my boluses, correcting high BGs, and making basic adjustments for exercise. I learned to test a whole lot more through participating in the diabetes online community (DOC) and also to use other variables, such as time-in-range, in assessing my progress. Getting a Dexcom CGM made a big difference (and I wish I hadn’t waited so long to do so). So overall, I know I am making progress: I handle lows better and have fewer of them ('tho heat and exercise are still rather tricky for me) and I know what to do when I get (mildly) sick. I use my logbook to understand what’s going on when I run either high or low and make notes about my feelings and experiences. I’m learning not to judge myself for hyper-and-hypo events and I sure feel better–and accomplish more–now that I am experiencing more normal glucose levels.

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Kimmon, I hard a hard time reading your story – I felt like I was living it through you – and I remembered, of course, the similarities of my boy’s diagnosis.

I am curious about this part:

We have never dealt with metformin for my son, so I am quite ignorant. Can you give more details on the experience?

Sure! First of all the tablets were too big for me to swallow easily and they smelled “fishy” too, yuck. Cutting them in half didn’t help 'cos the jagged edge made swallowing worse. But the gastro-intestinal side effects were quite severe and lasted about 6 weeks–cramping, diarhea, etc.–while I increased to the full dose. (Some people have worse symptoms, including nausea and vomiting.) Like your son, I’d lost a lot of weight and with the Metformin I couldn’t regain any in spite of the amount of food I was eating (way more carbs than I could tolerate without spiking). So my experience was not favorable though others may have better time with it.

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It was fishy smelling to me too, and I could not stomach it.

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