Immediately attempting to learn everything necessary to do manually that the body normally does automatically was overwhelming. With a new found focused desire to help my son learn to properly take care of himself, this feeling of anxiety and too much information crowding my brain, would eventually all become my ‘new routine’ of every day. Extensive research by JDRF (Juvenile Diabetes Research Foundation) providing new products to make Type-1 Diabetes management better and healthier, this type of diabetic is now able to not only live a longer life, but a fuller and healthier life. This is my goal for CJ. Remembering each ‘test’ time, or ‘check’ time, as Dr. Alan Rice calls it. He explained to us that the word ‘test’ causes stress to many people especially in dealing with children. Using a more calming word is very important in the mind of a child. Learning how much long-term and short-term insulin to use in all situations, along with growing my knowledge in how to make certain kinds of adjustments was a constant on my mind. I began to read every piece of information I could lay my hands on, in addition to the training we received on an ongoing basis from CJ’s doctor in the beginning. Changing to the insulin pump a year and a half after diagnosis was wonderful, but as I was told by another mother who had done the same several months earlier, it was yet another learning curve. Although the process was different, the insulin pump is something I would recommend as a very effective insulin delivery system that simplified life for everyone involved. It still takes work and still requires the same ‘checks’ throughout the day, but invariably it simplified our lives tremendously.
CJ, now turning seventeen has been learning to take responsibility of parts of his maintenance over the years to prepare him for full responsibility as he reaches adulthood. Part of the things we were prepared for upon his diagnosis is that teenage juvenile diabetics tend to become difficult and not helpful with proper maintenance, as they just want to be like everyone else, along with wanting to ‘take a break’ from their diabetes now and again. Taking a break would truly be wonderful, however, not possible. In retrospect, I would recommend that the “teenage” talk” should be only for the parents and adult caregivers and should never be spoken in front of the young diabetic, as I wonder how much it impacts their thinking to fulfill that early spoken dilemma.
Three years after diagnosis in 2006, I became a licensed life and health insurance professional, mostly due to the fact that it seemed there had to be some kind of health insurance opportunities for those people and families like us who were self-employed, meaning there is no large group health insurance plan to access. With Juvenile Diabetes as a preexisting condition I could find no ‘individual’ health insurance plan to cover my son, so I decided I would become licensed and search from the inside out instead of the outside in. In that time I searched high and low looking for an organization or state pools to help those who now cannot qualify for health insurance, and do not fall within the poverty guidelines for low-income state Medicaid coverage. Currently, there is a federal mandate for insurance companies to cover children with preexisting conditions, yet the premiums are exorbitantly high due to a variety of reasons.
Without insurance the necessary quarterly Endocrinology appointments currently cost $180-$330 per visit. In addition are the monthly cost of supplies such as two types of insulin (long acting and short acting amounting to several vials per month), check strips, needles or insulin pump site kits, ketone strips, and glucagons kits, all of which cost several hundred dollars monthly for proper maintenance for just one Juvenile Diabetic. How many families do you know who can afford this kind of self-pay healthcare? Most families simply cannot afford to cover it all will be absent from some or several of the specialist visits noted above. Yes, this is their child, but if there is not money to cover such costs, it simply is not possible. CJ has also been absent from the necessary checkups from time-to-time unavoidably. For this reason, CJ’s Fate was founded and is being developed to help the many Juvenile Diabetics and their families who need help in maneuvering the choppy waters for not only important, but also absolutely necessary medical assistance. For the benefit of all those afflicted with Juvenile Diabetes please pass on CJsFate.org to businesses and organizations who will benefit their tax liability by partnering with CJ’s Fate and helping so many in doing so.