November is National Diabetes Month, and this year, we caught up with Barry (bjf2000): history lover, grandfather and member of the diabetes community. Below, see what Barry says about his journey to diagnosis (“a flipping mess”), what it’s like to manage multiple conditions and becoming his own advocate.
Tell us a little about yourself. What are your hobbies and passions?
Right now I like genealogy and the study of my family history. History is people. I wish someone had told that to me back in high school! One branch of my family came over on the Mayflower, and I only need to find two more marriage certificates to prove my line down to the present.
My other passion is my grandchildren. I have six. One is an adult, one will be an adult in September, and the rest are 11, 8, 5, and 4. Four boys and two girls. Some are mine biologically, others by marriage. I, personally, do not differentiate. I don’t care how they got here, but they are mine now!
What was your diagnosis journey like?
My diagnosis was a flipping mess. As a teen, I was aware of diabetes, as my mother was diabetic, and taking insulin. I learned to administer shots just in case, and learned what her diet should be. Her doctor took us aside and explained that diabetes was hereditary, but if we followed our mother’s diet and weight management plan, we might be able to avoid or minimize the possibilities.
I took this man seriously. I switched to diet pop, and quit the cookies and candies. I cut down on the carbs, and ate lots of proteins.
In college, I started having these funny “spells” where I would get dizzy, shaky, and sweaty for no obvious reason. And it would be accompanied by an odd sort of intense hunger. So bad that I would grab the first edible thing in the refrigerator and gobble it. Raw hot dogs, slices of cheese, fruit, vegetables, even raw potatoes.
Eventually, I was ordered a glucose tolerance test. My sugar reading went way up into the 400s somewhere over the first two hours. They hung in there a bit more then started coming down. Fast. At six hours they stopped the test because I was not in good shape at all. I was having the worst episode I had ever had, and was not thinking clearly. I was told that my reading was under 40 and still dropping.
This was weird, but nobody really understood what it meant. They told me again I needed to gain weight. I tried but failed to rise above 130. They bumped calories, I kept up, but did not gain weight. At 5,000 calories a day, I gave up. I could not eat that much and be comfortable, but I did gain two pounds that month.
Eventually I hit 145 pounds. It was sort of true that extra weight helped hold off the episodes. But, oddly, my weight did not stop. My doctor said it was because I was older now and my metabolism probably changed. Just watch what you eat, he said. OK, I cut back some. The pounds were coming on faster, now. 155, 170, 195! Yikes! I counted every calorie, and charted every pound. Instead of listening, my doctor accused me of lying about my food intake. I fired him.
My new doctor made an effort to listen to this new 215-pound patient. He did some tests, and my blood sugars were normal, but just a hair below “pre-diabetes.” His theory was that perhaps I was in the early stages. We watched my weight and sugar readings rise. At 265 pounds he was ready to declare me a diabetic. I thought this meant I was not making any insulin. He disagreed, and ran another test. My body had 300% of a normal person’s insulin running around doing nothing.
Numerous medications later, I was in a stable state, and I began a rather intense weight-loss program. About 800 calories a day. Alas, I had to stop because the blasted diabetes took an unexpected turn. We tried new medicines, one with disastrous results. My legs suddenly started to swell up to the point they filled up my pants, and the skin started to split. I still suffer from this issue, although surgery has helped greatly.
I really did not want to start insulin, as it reminded me too much of my Mother. I started at 10 units a day, and quickly moved up. I got to the point that I needed to take all 300 units per day.
Now, I take one shot in the morning with my other medications. I eat a little something because the pills upset my stomach. I eat dinner at home, trying once again to lose weight along with my wife. I have a snack before bed, take my pills, and my evening shot.
I am experimenting with different snacks to see how they affect the readings in the morning. If it is sort of sweet, it seems to work better than just plain carbs like crackers or bread. Fruit does not hold the nausea at bay, but I have been trying to combine that with a little bread. Surprisingly cookies seem to work pretty good.
How has life changed since getting diagnosed?
Well, I am older. I do not know if I can attribute my current issues to diabetes directly, or just the ravages of aging. I have arthritis, but it is weird. One toe, one finger, two knees, one hip are really giving me a time, but I have three more fingers and a toe gearing up. I have been told that non-symmetrical arthritis may be associated with diabetes type 2. “Syndrome X,” I believe is the name mentioned. Could be. I read up on that a bit, but no doctors are willing to make that a diagnosis.
Along with diabetes type 2, you’re also living with hypertension. How has it been managing the two at the same time?
I do not even believe I have this. I was tested for three months before being diagnosed, and my blood pressure was fine. Up near the high part of normal, but it was fine. The day I was diagnosed, suddenly I was told I had hypertension, but the actual numbers never changed. They put me on medicine, which promptly made me sick. After several tries, we have one that only makes me sleepy. If I sit too long, I am gone. Riding in the car, I am gone. I used to love to drive, but now, I can’t go for much more than an hour and I am so sleepy I have to stop.
What’s one thing you think people should know about diabetes type 2?
I do not believe it is a “Lifestyle Disease.” I do not know what triggered mine, but my lifestyle was pretty good except for eating cheeseburgers several times a week for lunch. That name makes it sound like I did this to myself, and I am just too lazy to cure it. Believe me, that is not the case!
How has your experience been so far on PatientsLikeMe? What keeps you coming back to the site?
I find myself answering more questions than asking them, but when I do have a question, I get lots of interesting things to think about, read up on or grill my doctors with.
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