My Journey with Diabetes
By Marana Vradenburg, VisionAware Peer
My journey with type 1 diabetes started when I was 9 years old. My memory of the months preceding my diagnosis are a bit fuzzy. I do remember complaining to my mom about not feeling well, and she had noticed I had lost significant weight although my eating habits had not changed. I was moody and emotional and my doctor at the time had speculated that it was possibly my menstrual cycle beginning. I remember my mom telling me she was taking me to the doctor that morning. I was put through every test I could imagine and had never imagined. I returned home to be told by my brother, just 10 at the time, that the doctor’s office called and wanted me to return to the hospital. The tests showed I was diabetic and needed to be admitted. Diabetes was not something I had ever heard of, and I had no idea that it was something that I would be living with for the rest of my life.
My Time in the Hospital and Subsequent Instructions
During my two-week stay at the hospital, I was taught how to check my blood sugar and give myself insulin injections. Back then, the best meter on the market was a Diascan, and it was quite different than the meters and technology available now. After poking the tip of my finger and initiating the test sequence, a drop of blood would go on the end of a test strip. The meter would count down 60 seconds. Then I would wipe the blood from the test strip which now showed some shade of blue and insert it into the meter to be read. The lighter the shade of blue, the lower my blood glucose was; the darker meant my numbers were high. This was the part I hated the most. At that time, we did not know nearly as much as we do now about diet, exercise, and medication and how to make them all work together. My instructions from my doctor were to not eat cake and cookies, take my medicine, check my blood sugars, and I would be fine. There was no discussion about the different types of carbohydrates, how fat and protein affect the absorption rate, and how to adjust my insulin intake accordingly– the 40 other things that can affect blood glucose levels aside from diet. Since that time, I have learned about the potential complications of exercise and medication and many other things along this very bumpy road.
Managing Diabetes Can be Tricky
Diabetes is tricky in that the long-term effects of high blood glucose take a while to appear whereas low blood glucose can be seen immediately. It wasn’t until much later in life that I was really able to grasp what my parents were feeling at that time. Imagine having a young child diagnosed with a disease you don’t really know much about, injecting a medication that their life depends on but with such a small therapeutic window, e.g., the amount you give could be enough to work, could not be enough or could be too much and kill them. Then you add the factors that the child will be eating, running, playing, and all the other things kids do, all of which affect how the medication works or does not work. Sometimes I don’t know how they did it.
Major Changes in my Life in 2004
Fast forward to 2004, I survived my school years and had trained to become a cosmetologist and was working as a self-employed hairstylist. My job was fun, artistic, and socia,l but in choosing a career, I probably should have thought through the fact that I wouldn’t be covered under my parent’s insurance forever and that my diabetes would raise the cost of my coverage. Needless to say, as a struggling new hairstylist in a tiny little town, I was far from earning the income that would cover the cost of proper medical care and medications. To summarize briefly, I got by on medications that would keep me alive because the out-of-pocket cost was far less than those that my doctor had recommended. Unfortunately, they did not provide the tight glucose control that I needed.
On May 6th 2004, I drove myself to work, finished my shift at the salon, went with family to dinner, and came home to watch “Phantom of the Opera” with my family before heading to bed. Somewhere around midnight I got up to use the restroom and get a drink of water and noticed that the digital readout on the microwave was much blurrier than normal. I just tossed it up to being sleepy and went back to bed. I had been noticing some changes in my vision and had mentioned to my mom that I needed to get to the ophthalmologist. When I got up to get ready for work that morning and couldn’t make out my reflection in the mirror, it was too late. After four surgeries in an attempt to save the little eyesight that I had at the time, it was too late, and I rather rapidly lost my remaining vision. I was thrust into this world of blindness. At that time, my doctors were somewhat surprised that my kidneys were still functioning at 50%; apparently, the kidneys typically fail before sight loss, but, not for me. Seventeen years later and as of right now, I am on kidney dialysis and waiting on the transplant list. Even though my diabetes has been far better controlled since my wake-up call back in 2004, once irreversible damage is done, it’s difficult to stop more from occurring.
The technology that is available for monitoring and controlling both type 1 and type 2 diabetes today is far better than it was years ago, and I’m thankful for that. Had I had access to things like a continuous glucose monitor (CGM) like the Dexcom that I wear now or the Libra, I probably would have been able to avoid the complications that I now live with, but they do help immensely now. Insulin pump technology combined with the CGM has advanced to the point where it functions similarly to an artificial pancreas but there is still a way to go, especially in regard to accessibility.
It seems a bit ironic that while diabetes is still a leading cause of blindness, the technology that offers the best control remains inaccessible. Pump technology, which arguably offers the tightest control, while advancing in design for those who are sighted, leaves much to be desired as far as being able to use it independently and effectively for someone who is blind. The sleek and buttonless design that the majority of them now have has rendered them useless to those of us who cannot see. As of right now, there is not an insulin pump available that has speech output. There is still a lot of ignorance, even for those who work in the field of diabetes, about the need and availability of assistive technology. However, with the growing demand for applications on smart devices, like the iPhone, which can control various home and personal devices remotely, there is a bit of light at the end of the tunnel.
For example, the insulin pump company, Tandem, has partnered with the CGM company Dexcom. While the touch screen on the pump itself is completely inaccessible, the Dexcom does have an app that is accessible. Tandem has recently allowed for remote control of their pump from their app, something that, of course, had to be approved by the FDA. I have not been able to evaluate it as of yet to know whether or not it’s accessible, but I would be interested in finding out if anybody has experience with it. I did wear a pump for about 13 years but switched back to insulin injections about a year ago since the pump I was wearing became obsolete, was no longer being manufactured, and could no longer be repaired. I was able to navigate the one I had by memorizing the sequence of buttons I needed to press and could recognize the various beep patterns; still, the majority of the features remained inaccessible.
Need for Advocacy for Accessible Technology
In my opinion, it’s our job as consumers and those who rely on this technology to treat and manage our diabetes to educate and voice our need for accessibility as technology continues to improve and evolve. In speaking to various healthcare professionals about the disparity in the accessibility of insulin pumps, it seems our biggest hurdle is the fear of liability on behalf of the manufacturers. This is a legitimate concern when viewed from their side of things. I am excited to see where tech takes us in terms of many healthcare issues and I hope as we advance, we will all be able to reap the benefit.