by Deborah Robinson
Includes photo of Deborah Robinson
I was born on March 18, 1947 in Winchester, Mass. My parents lived in Wakefield. I think I was born there only because there was no hospital in Wakefield at the time.
I was diagnosed with diabetes at 16. It came on sudden and severe. I was extremely thirsty and couldn’t get enough to drink. I remember being at the Joslin Clinic, the famous clinic in Boston. I was diagnosed first, and then I went there for instruction.
My diagnosis was fairly easy. It was so obvious. I had a neighbor, a little girl, who was also diabetic. When we were out playing, I was in charge of keeping an eye on her, so I was used to having something sweet on me to counter an insulin reaction. I was pretty knowledgeable about it. It wasn’t a big surprise.
When I was young, the syringes were hideous. They were re-usable, and had to be boiled after each use. They were glass, and the needles were big enough that you had to clean out the inside of them with a little wire and then you boiled those, too. You even had a stone to sharpen them on. It was nothing like today.
When I was diagnosed, there were no home blood glucose monitors to test with; we tested urine. We put the urine in a little tube, dropped in a tablet, and looked at the colors. I had a lot of orange, which meant I had high blood sugars.
They now have blood glucose monitors, ones you can have at home, but now I have one that’s better for me, because now I can’t see. Now, I use the Accu-Chek Voicemate. It’s a really nice one.
My sugars bounced around a lot. As a child and adolescent, I had more insulin reactions than I had later on. Now, I’m more apt to be high. At the Joslin Clinic, I was taught to be a little on the high side to avoid going too low.
Unfortunately, I let it go to far. It was extreme, too high for too long, and I got some complications. Even after the first year, I noticed my feet would get numb, as early as that, and my fingers, too. I was about 17 or 18 then.
I had problems with my pregnancies, too. Not gestational diabetes, it was onset by that the time. Just with carrying children I had toxemia. I know you can have that without diabetes. I put on a lot of water weight. It all wound up okay in the end.
I do have huge triglyceride problems. I also have MS (multiple sclerosis.) I started having vision problems early, but at first the MS was causing it. The diabetes didn’t start affecting my eyes until much later, but diabetes made me lose my eyesight. The MS, you know, made me legally blind when I was young -- but I still had sight. I didn’t have reading vision, and I couldn’t recognize faces unless they were really close; but now I’ve lost my sight completely, and one eye had to be removed.
My diabetes has led to several other complications. I had retinopathy, but I also had a type of glaucoma called rubiosis. I’d never heard of it. It was an ordeal. Within a year after the doctors removed the one eye, the other eye went.
I have a heart problem too. In fact, depending on what doctor I’m talking to, he’ll blame that on the diabetes, too. It’s called sinusnode function. This problem has just started in this past year. I kept passing out, like seven times within six weeks. I thought this was odd. I thought I was having insulin reactions; but it turned out to not be that at all. I had no warning. I’d just collapse. The last time it happened, I cracked my scalp open on the bathtub. So, they put me on a Holter monitor, and discovered it was my heart. They put me in the hospital to have a pace maker put in. Either my heart stops, or it races like mad. As soon as I got that over, I felt a lot better. Neuropathy can affect the heart, too.
There’s something else I was born with. It is associated with diabetes, especially nowadays since doctors know more about it. I have something called celiac disease.
This is more common among type 1 diabetics than anyone else, but you don’t have to have diabetes to have celiac. It is common enough that the diabetes clinics nowadays screen all children for it.
My younger boy, Tom, has celiac disease too. At the time, I didn’t know that’s what you called it. It’s really a hereditary, genetic problem. My grandmother had it as well; and I’m finding out, years later, a lot of my first cousins have it.
Celiac is an intestinal malabsorption syndrome, and it means you basically can’t have gluten, which means: wheat rye, barley, oats, or any of the chemicals in food that translate to gluten -- like MSG, modified food starch, etc. Also, you usually have a problem with lactose as well, you know. What a pain in the neck that is. You know, it really messes things up for the diabetic. It causes diarrhea.
I was sick with it all my life and nobody knew what it was. I got mis-diagnosed with everything from Chrone’s disease, to spastic colon. Nobody really knew, and it was very easy to figure out, because you could get a biopsy.
I collect funny incidents. My whole life has been one big ha-ha. I just thought of a beaut. I remember one time when my husband was still alive, there was a bee in the house, and I just happen to be allergic to bee stings, one of those reactions where your throat swells up. Well, this thing had landed on a window shade in our bedroom. I thought, “Oh my goodness. I gotta get rid of this thing.” Well, I stood up on the bed and the end of the bed is right near the window. Right about then, I started to have a reaction, an insulin reaction.
It came on like gangbusters, so I thought, “Oh no. This is terrible.” So, I just grabbed the window shade, pulled it down slightly, and let it fly. The shade rolled the bee up in it. We were all laughing like crazy.
I didn’t move that window shade for six months until it was a crispy critter. My two boys, Jason and Thomas, were killing themselves laughing.
They're all grown up and married now. Jason is 36 and has a 14-year old son. Thomas is 33.
They also call me the squirrel lady. I love squirrels, and even though I can’t see them now, I can hear every little move. I know just which one is which because of the different weights. I can hear them come up my steps to get the peanuts. I’ve got names for them. One is called Baby, and another one is called Gus. We even had one we named Boo-Boo because the poor thing, he lost his hair. I don’t know whether he chewed it off, or whether he got into some insulation somewhere or what, but he had a bare back. He used to throw his tail over his backside to keep warm. We called him Boo-Boo also because there was something wrong with his jaw, and he couldn’t eat the peanuts. So, we gave him peanut butter sandwiches. He actually survived the whole winter on that.
Squirrels are sweet. I even have a hat with patches of leather on it and I call it my squirrel hat.
I think the Voice is a wonderful publication, and my physicians really enjoy getting it. I always save one for the doctor himself, and with his permission put the rest on his office table where his magazines are. He says: "Oh goody. My patients, they grab them up. They go like hot cakes."
They’re usually completely gone when I go there the next time. I guess all his patients really like them. It’s really informative, so how could they not?
I'd like to tell people that I know everyone’s different, but I think it would be prudent to keep on top of your blood sugars daily, keeping as tight control as possible. Some people seem to squeak by, never having any problems, and they’re not even taking care of themselves. Then, there are others who get tight control, and have everything go wrong. You can’t possibly fail by taking care of yourself. If you just let it go, then you got nobody to blame but yourself. I’m presently in a program to get the pump, and I haven’t got it yet because I have to really get my A1Cs down lower.
I just know that any diabetic, on insulin especially, can feel the difference when they're under better control. It’s something you cannot take a vacation from. It’s there whether you want it or not, and it’s something you have to learn to live with.