by Bridget Toal
I
am blind, and I have been on the insulin pump since April 2005.
I was diagnosed with diabetes at age 2-1/2. At age seven, I went to Camp Firefly to learn to do the needles myself. They went over the diet, needles, blood testing, and activities to make me more independent. They had me practice giving injections, sticking needles into oranges.
I started injecting my own insulin, under my mother’s supervision. She was my main assistant; my dad was working. We tested my blood sugar by urinalysis. I remember matching the strips and the different colors.
I used syringes at first. When I was in 10th grade (age 15), I used an air gun, a needle-less injection device. I wasn’t on it very long. It did a lot of damage to my injection sites in my arms and thighs.
In 10th grade I went to Joslin Hospital in Boston. They took me off the air gun right away. They did extensive eye exams, and put me back on a needle, and on a mix of NPH and Regular insulin on a sliding scale.
As an adult, my doctor put me on a Lilly insulin pen, with a 75-25 mixture. That was good in that it was easy to keep with me on the road. There were no vials, no needles.
I had always gone to an eye doctor regularly, every year. They would check for glaucoma and conduct a very in-depth eye exam. But that doctor retired, and I went to a new eye care clinic. They did the chart, the basics, but it wasn’t a really in-depth eye exam. By the time they noticed the bleeding in my eye, it was pretty extensive.
I went to another local eye doctor. He saw I had bleeding in both eyes, and suggested two new laser treatments to correct the bleeding.
Then one eye hemorrhaged while I was driving. The doctors saw I’d had hemorrhage, and said it would dissipate, but it never did. Their suggestion was to go in for an operation to drain it, a vitrectomy. While I was set up to do that, my other eye hemorrhaged. They said I had proliferative retinopathy, and it was happening so fast.
The surgeons tried to scrape the scar tissue from the retina. In total, I had five eye operations.
By June 2003, I had no sight. When they started the surgeries, they said I had an 80 percent chance of getting my eyesight back. But I ended up falling into the 20 percent category for both eyes.
Now, at age 33, I’m totally blind. If you point a flashlight directly at my eyes and turn it on and off, I can see a faint flicker. If driving with someone at night and there are oncoming cars, I can see a flicker from the headlights.
I periodically had asked about the pump, and the doctors kept saying I was not a candidate. I had no idea what the pump was. I thought it was surgically implanted, not external.
One ophthalmologist said I’d have to go through special tests before I could go on it. I got all those tests and procedures, but still my endocrinologist and nurse said I was not a good candidate for the pump. They didn’t really explain; they just said I would need a sighted person with me in order to use the pump. During the eye procedures, I went back to living with my mother, but I intended to go back to my own home.
It was when I got pregnant that I finally started learning more about the pump. I was in the hospital, and the diabetic coordinator took her pager and put it in my hand. She told me that’s what the pump felt like. But the other doctors said, again, that if I were to have a pump, I would need a sighted person with me at all times.
I had a miscarriage and lost the baby. I was determined to get my diabetes under control, because I wanted to have a child. I got a new doctor, and he then showed me a pump, and explained it to me. He put it into my hands. He explained that it was external. With it, I could do anything—even sports. It was a simple procedure to temporarily suspend it, so I could take a shower.
This was in 2005, and the pump was a Medtronic (Minimed). I went on it with saline, for practice, for two weeks. I tried it when I was still living at home with my mom. She got a pump too, so she could go through it step by step with me. I wore one. Eventually, we went on to insulin, in April 2005.
I am now at home, by myself, managing my diabetes with no sighted assistance. I change the pump; I change the reservoirs. The only thing I get assistance for is the basal rate. If it needs any adjustment, my mom does it over the phone, with the doctor giving her step-by-step instructions. Otherwise, I do everything else myself for the pump.
The pump has two “rates,” two types of insulin delivery. You need to set both, to get it right. With the basal rate, you get insulin continuously, across 24 hours. It gives you a certain amount per hour. You can set it to deliver differing amounts throughout the day, because you’re going to need a different amount when you’re active, than during your sleeping time.
When you eat, you manually set your own bolus rate, and come up with your own ratio, determined by how much food you consumed at that meal. You learn your sensitivity to carbohydrates, which determines your insulin need. You can be more or less sensitive to the carbs you eat. I calculate my bolus dose at six carbs per one unit of insulin.
I got pregnant again in December 2005. My A1c was at 6.2, and my doctor wanted it at 6. They wanted my sugars to be between 70 and 90. I lost the baby again on February 20. They’re doing genetic testing now, to find out why; they don’t know if it’s because of diabetes or another genetic issue.
I have had a few hypoglycemic episodes, but all explainable. I was dieting a lot, when I was 16 or 17. I was doing Jenny Craig to lose some weight, passed out, and had to go to the hospital. By the time I got to the hospital, my blood-glucose level was in the low 20s. And with the second pregnancy, the lowest blood sugar I had was a 29. But I feel the lows when I get down around 60MG/Dl.
The pump’s buttons are easy to use. It vibrates when your insulin reservoir is completely empty, and you can feel it, tell that it is vibrating. It practically comes out and slaps you in the face when you have no more insulin left.
Anyone, sighted or blind, can use the pump. There is absolutely no reason not to be on the pump. I’m blind, I’m on it, and I could not be in any better control. It’s a very simple device to use. It’s not totally accessible, yet, but it is blind friendly. I’m dealing with Medtronic, trying to give them some suggestions.
If you want to talk to me about blind people using insulin pumps, please contact me c/o Voice of the Diabetic.