Photo: portrait. Caption: MARY RYAN
Mary Ryan, from Westfield, New Jersey, is a Eucharistic Minister, a dispensor of Holy Communion, in the Catholic Church. She is a Licensed Physician's Assistant (PA). A veteran parent, she has raised 30 foster children, and has had three of her own. Forty-seven now, she has had type 1 diabetes for 36 years. She has been using an insulin pump for 20 years, and has been blind from diabetic retinopathy approximately as long. She is a member of the Garden State Chapter of the National Federation of the Blind of New Jersey. She has a lot to say.
I was diagnosed with juvenile diabetes at the age of 11. About two years before, my father had been diagnosed with type 2, adult onset diabetes. Our family had just gotten around to understanding diet and exercise and how important they were, when I became very sick. I lost about 30 pounds in maybe six weeks, and became very lethargic -- with the typical symptoms of type 1 diabetes: excessive thirst, excessive urination, and dramatic weight loss.
It didn't really dawn on my parents what was happening, even though they had experienced my father's adult onset diabetes a short time before. They were really thinking, and worrying, about leukemia!
I had been kind of a chubby girl -- and they got me to the doctor when they realized the weight loss was not a good thing. I just became sicker and sicker. When the diabetes was diagnosed, I was in the hospital for eight days. While there, I learned about diet and exercise, talked to the dietician, and learned how to give myself insulin injections.
Diabetes treatment, back in those days, was very different than it is today. You went to the doctor every two or three months, and had a blood sample drawn, and based on what he found then, the doctor would adjust your insulin dosage. It seems ludicrous to us now, as we know insulin levels change from moment to moment and certainly hour to hour, depending on your exercise and diet, and, for women, your menstrual cycle. Unfortunately at that time, tracking diabetes was not a "state of the art" thing.
After I had juvenile diabetes (type 1) for 16 years, I started to get "floaters" in my vision. These are sure signs of diabetic retinopathy, and I had laser surgery to try and halt the bleeding in my eyes.
I believe the retinopathy probably happened because my blood sugars, in high school and college, were all over the place. I was a brittle diabetic; I had very poor control. Thank God there was no kidney damage, but my eyesight was compromised. But I didn't let it slow me down.
I graduated from college, and went on for 2 1/2 years' training as a Physician Assistant, finished it, and worked for a diabetologist. Then I got married, and was soon the mother of two small children (after a miscarriage first pregnancy).
Our first son was not quite two, and our second was ten months old, when I became totally blind. During my second pregnancy (my first successful one), I was admitted to the hospital nine times, with blood sugars around the 800mg/dl range. That wasn't for lack of supervision -- remember that in 1978, home blood glucose monitoring was almost unavailable.
I was going to the doctor for blood sugars about twice a week, but just as some women, not normally diabetic, become diabetic during pregnancy, with gestational diabetes, a diabetic woman's control can get radically worse during the pregnancy. Most diabetic women do pretty well during the first trimester, but the second trimester, the pregnancy just pours glucose into the system. The uterus becomes gluconeogenic.
After nine admissions to the hospital, we were sure the baby was in jeopardy, but he was born, one month early, by caesarian section. He weighed 6 lbs, 12 oz, pretty good, after what we'd been through; but we thought he had a "VSD," a ventricular septal defect, in his heart. A year later it was discovered he had a much more serious "four-pronged" heart problem, one that would take his life at age 14.
My second diabetic pregnancy occurred about 18 months after the first, and was more typical, in that my control seemed to be better, but my second son was also born a month early, by caesarian section. He weighed 10 lbs, 5 oz, a typical large baby of a diabetic pregnancy. And it was when he was 10 months old that the last of my vision left. I was blind.
At this point, I was working in my diabetologist's office, as a Physician Assistant, instructing young, pregnant diabetic women, telling them what to expect, and what to do, as I had just been through it myself. That was when it was suggested I should try an insulin injection pump, as it would be the best way to save my kidneys and reduce the chance of further complications.
With my husband, I went to the training, to see what using the pump entailed. The criteria were that you had to be highly motivated, had to be willing to really pay attention to diet and exercise, and had to commit to at least four blood sugar tests per day. As home monitoring equipment was finally available to me, this felt like salvation.
The pump sounded like a perfect fit for me. I was a Physician Assistant, and at our practice, we were starting to put patients on the pump. I was used to "selling" the idea to diabetics. I taught them this device could really change their life.
I think I was the fourth person, and the first woman, to go on the insulin pump in the state of New Jersey.
Shortly after I started pumping, with my blood glucose control good and tight for the first time in my life, we started a third pregnancy, and it went perfectly. My health stayed perfect, I tested my blood seven times a day, and the baby (born two weeks premature, by caesarian section again) weighed a healthy 7 lbs, 8 oz. It was an entirely different experience, being pregnant on the pump. The pump helped me avoid the fluctuations that are otherwise an inevitable part of a pregnancy. It provided me good, tight control.
We were so grateful this last pregnancy had gone well, that we wanted to give back, and give thanks to God. We started taking in children, becoming foster parents.
When Brendan, our third son (who's pregnancy went so well) was 13 1/2 months old, we took in our first foster child. I had already been blind for 2 1/2 years -- but fostering seemed like a good idea, since I was at home with three boys under age five anyway. It just kind of took off. We've never put the cradle and bottles away -- we just keep going.
Twenty-two of the 30 foster infants we've taken in have been boys. We have a sign on the door that says "Boys are Us!" My brother calls this place the "testosterone theme park." Our first son, PJ, died at age 14, seven years ago. Our son Tim is a junior at Fairfield University in Connecticut, and our son Brendan is 17 1/2, and a senior at St. Peter's Prep in Jersey City. We also adopted a son, Jason, who was 15 in December.
It's a lot of work. The infants keep me in good shape. Also, I go walking every day, as much as I can. It's important. You have to be committed to your diabetes control -- as the disease can be so deceiving. You think you're OK, maybe you're not feeling great, but you're sure you're OK, and you're not. It's insidious the way it can damage those organs. You have to really be committed to your diet and exercise program.
I would say it's very much a human tendency to be lax not only in diet, but also with exercise; and whether you're on the pump, or using daily insulin injections, you really need to be vigilant. Your self-control and commitment to being as healthy as you can will determine the success of your diabetes control. "Diet and exercise," easy to say, and very difficult to do. You need to work with your nutritionist and diabetologist, and use lots of common sense. I know it took me a long time to understand that immediate gratification, eating that cookie or having that pie, just isn't worth it. If I take something I know I shouldn't have, I start to feel sleepy, sick, or unwell, within half an hour or less, and it's just not worth it anymore. I would say that, especially for parents of type 1 diabetics, if they really feel their child is well- motivated, getting the patient on to the insulin infusion pump, as early as possible, is your greatest ticket to avoiding end organ complications later on. With the pump you have tight control, and you avoid the peaks and valleys. It's all levelled off; you're getting basal insulin in micro-drips 24 hours a day. As I tell patients, it's really as close to achieving a non-diabetic state as we can provide right now.
From the Editor: Mary would be glad to help advise any interested blind person, about using the insulin pump, about child care, or about Eucharistic Ministry. Mary is the only blind person in her area who does such ministry. You may contact Mary Ryan through VOICE OF THE DIABETIC.
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