My Story: Sue from Pennsylvania
I have always defined myself as a wife, mother and grandmother. I worked for many years, first for 35 years in self-owned businesses with my husband and then when we decided that we didn’t want the responsibility of owning our own business, in a law firm as a secretary/receptionist. This took me back to where I had started because this was my career path before I got married. I love knitting, crocheting, beadweaving, cooking, reading…well, pretty much anything that is creative.
Last year both my husband and I turned 65 and my definition of myself changed. I now define myself as my husband’s advocate for his Continuous Glucose Monitor (CGM). We started this journey sometime in September or October of 2012 when he needed a new CGM because his 2 ½ year old system had started to behave very erratically. We never considered that we would have a problem replacing the CGM with a new one. Our private insurance company had always covered most of his diabetic equipment and supplies, and we expected that Medicare would continue to do so. We were wrong. Unlike many people who get denied and either live without a CGM or pay for it out of pocket (at great financial difficulty), I decided that I was going to Appeal the decision. We have gone through the first three steps of an Appeal and are now waiting for an Administrative Law Judge to render a decision. Hopefully, the decision will be in our favor but if not, we are prepared to continue to fight until we win or have exhausted all of our options.
My husband and I have been together for 50 years. We were high school sweethearts (16 years old), married after his stint in the Air Force and built our lives together. Although diabetes was in the family (his older brother), it wasn’t until my husband was diagnosed that I learned how hard it can be to control it. Facing the reality of brittle diabetes along with hypoglycemia and hyperglycemia unawareness, our lifesaver was the CGM.
Now that his CGM is not working and he is going without it, my days are filled with worry that something will happen to him. This is why I have become his advocate. I want to grow old with this man whom I literally grew up with. I always envisioned us growing really old together and I want to ensure that this happens. I know this can only happen if he has a CGM.
Sue, I am so proud that you are Marc’s advocate. What can I personally do to help.
With love, Helen
Thanks Helen. The only help I need at the moment is to ask everyone who has gotten my blog to forward it to everyone on their e-mail list and ask them to forward it so that it circulates to as many people as possible in the hope that more and more people who have the same brittle diabetes and hypoglycemia and hyperglycemia unawareness will get in touch with me. From there, if we keep growing, then we can do something about Medicare guidelines. When Marc had a CGM and it was working properly, it saved his life many times. Now that his no longer functions, he takes chances every day, especially when out driving. So this is an extremely important issue to both of us.
Hope you and Joe are well and again, thank’s for reponding.
Hopefully some day the CGM will be as routine a treatment for type 1 as a pump!
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