This week I exhaled and sent an email to my doctor, the opening line reading, “Today was so hard.”
It is unlike me to show that much vulnerability upfront, but I was exhausted. And, if I am being totally honest, the past few months have been so hard.
Please trust me that this is more than the typical “diabetes rollercoaster” term used to describe the highs and the lows inherent to living with diabetes. Heck, it has been the diabetes “Tower of Terror.” Blood sugars were thrown into the spiraling abyss of lows in early 2016, only to ricochet back up into the stratosphere, seemingly unscathed by my defensive insulin jousts this spring.
For most of my life, I have known this truth: There is a “great unknown” affecting my diabetes. As a young child, I would be fine one minute, building couch cushion forts with my siblings, and the next minute I would be covered head-to-toe in a rash.
I recall being about eight years old and lifting my shirt to see large, circular patterns of hives all over my abdomen. My limited reference point at that time was the worst case scenario discussed in Catholic grammar school. This was clearly modern day leprosy in a suburb north of Boston! I tipped my head back and screamed at the top of my lungs.
Mom reassured me that although hives are unpleasant, I was not dying. This outbreak was no match for an Aveeno oatmeal bath. Do they still sell that stuff?! Magic!
I developed blistering rashes on my hands and fingers, an itchy-then-painful contact reaction. Contact with what? We still do not know. Anything and everything could be the trigger. As an adult, this occurs less frequently, but still happens from time to time.
There are other vague symptoms much like those described in this articulate New Yorker piece: low-grade fevers, allergies, stuffy nose, scratchy throat- that general sense of feeling run down but not sure exactly what is wrong. All of these factors send my blood sugar (and ketones) soaring, due to the obvious biological response to inflammation/bodily threats.
While you may be reading this and thinking, “So what?,” I assure you that I have spent years asking the same. In acute instances, this stuff seems trivial. But long-term, the sum of the symptoms is messing with my overall health. I have worked so hard to rewrite my diabetes management with multiple daily injections, to push the limits of my anxiety and to experience more freedom as a result, and to play by the diabetes “rules”. Therefore, I will not allow this undefined immuno-gobbledygook to strip me of my health and dignity.
Because no doctor has time in a half hour appointment slot to put all of these puzzle pieces together, the puzzle has laid strewn across the table, unfinished, for decades now. Perhaps it is seeing the CGM graphs with more yellow (“high”) than I would like to publicly admit, perhaps it is the struggle to get through adult responsibilities each day when feeling like a fatigued zombie, or perhaps now is simply the right time.
Whatever it is, I am ready to connect the dots, with the help of a qualified healthcare team. We will become the Sleuths of 2016, our magnifying glasses polished to uncover clues along the way. Inspector Gadget and Harriet the Spy will have nothing on Boston physicians- I guarantee it!
In a few weeks, I will attend my first appointment with a renowned immunologist at a Boston hospital. The receptionist forewarned me that an allergy scratch test is imminent, and friends in the autoimmune world recounted lots of blood draws. Although my symptoms may not meet a diagnosis standard, they still exist. While my hope is that the doctor’s investigatory work rule outs any major problem, I also fear not having a real answer. Actually, I mostly fear not having a course of action.
Best case scenario: It’s not modern day leprosy, I’ll live, and this is how we’re going to treat this immuno-gobbledygook so that it no longer wreaks havoc on my blood sugar. The End. Happily ever after. Puzzle fully pieced together into a picturesque Thomas Kinkade image.
Then I will send my doctor an email, the opening line reading: “Today was so good!”