My pancreas is completely useless. Or soon will be. The precious hormone that this organ makes for controlling blood sugar levels, insulin, is barely being produced. I’m now part of an elite club of adult type 1 diabetics, representing 1.4 million adults or 0.42% of the U.S. population, according to the 2020 CDC National Diabetes Statistics Report.

The diagnosis of such a disease for any new patient is filled with mixed reactions – shock, confusion, dread, frustration. For those with predisposed conditions, like having a parent with the disease, it might be less shocking. Nonetheless, every new patient’s old way of life becomes upended and the need to adapt to living with T1D is necessary for survival.

The adjustment may be difficult since the carbohydrate counting, insulin administration, and blood glucose testing can be mental hurdles, not to mention the novel experiences of high and low glucose levels resembling emotional and physical rollercoasters, but accepting that the old way of life, where we could freely eat Oreos whenever we wanted or exercise without mathematical calculations, is pretty much gone. Parents of newly diagnosed T1D children often feel the same stressors.

For some of us in the elite club, the cause of T1D was seemingly random. As it turns out, steroid-induced diabetes is not unheard of, just rarely talked about. A prescription of prednisone temporarily relieved my debilitating back pain caused by bulged disks, but it also caused me to drink a lot. For three months, I drank around three gallons a day and lost 10 pounds. I had a short bout of uncontrollable body chills, vomiting, and fatigue. A doctor’s visit revealed that my hemoglobin A1C (a blood test that measures the average blood sugar levels over the past 3 months) was over 14%. The normal range is below 5.7%. The blood glucose meter read “HIGH” which typically means 500mg/dl or above. Normal blood glucose levels for a non-diabetic are 90-110mg/dl. Thankfully, my doctor ordered an insulin and fluid infusion immediately. Insulin is now the ingredient for my survival.

Now, three months post-diagnosis, the novelty of the experience, the trial-by-fire self-administering medication, and change in routine is almost gone. My grocery shopping list has changed. My new continuous glucose monitor that I wear helps with decision making. I’m on a first-name basis with my insurance provider and pharmacist. I’ve finally found some level of blood glucose stability, although I’m now facing a new, ugly challenge. The emotions have recently hit hard. I have a family support network that has been great.

Still, I feel alone in my experience. The physical high and low blood sugar events cause a flux of emotions as well. I constantly apologize to my husband for being overly snappy, a side effect of high blood glucose. I’ve searched for diabetes support groups in the area in hope of establishing relationships with people having similar experiences as me. The two or three hospital-run groups that I found are short-lived and take place on weekdays when I work, so I’m considering forming an informal support group on social media, with occasional coffee and outdoor meetups.

I am thankful for having insurance and the financial resources to afford the components that ensure my comfort and survival. I can’t imagine not having the resources to afford insulin. The drug is estimated to cost some families $6,000 annually. Thankfully, in Maine we have a cap of $35 monthly for insulin. This cap is not available nationwide, but a new bill called the Affordable Insulin Now Act is aiming to change that. The bill has been introduced to the House of Representatives. If you support it, please write to your district representative, and say so!

My pancreas is useless, but I have injectable insulin, so I’m among the fortunate. Everyone with this disease deserves to catch a break; insulin cost reduction is one major way to help relieve financial and emotional hardship.

— Special to the Telegram

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