Thursday, September 21, 2017

Milestones

One month, two month, three month, four. It is another year older, walking and eating, and attending school. There is the first goal scored on the children's soccer league, an invincible teenager's awkward first kiss, and then a graduation. Afterwards, an application is placed for a new job that likely began as an internship. Then, perhaps there is a tally to mark the number of days that have passed since some horrible experience—serving as an optimistic "I made it through." These events share a commonality. They are all life milestones and are undoubtedly celebrated.


Milestones are defined differently in the life of someone with a chronic illness. They are not necessarily joyous occasions. To me, they are a reminder that I am so far from where I wish to be. Time is inherently passing and life is inevitably changing. However, it is not always for the positive. I am definitely reaching milestones, but not the right ones.

Two years ago, I should have been moved into my college dorm and attending freshman classes at the private liberal arts college I received a scholarship to. Instead, I was at the hospital using my first EpiPen. I had already not been home more than twenty sleeps that summer due to a series of hospital admissions.

Flushed and swollen, a gurney transported me to a room. I was Florida Hospital's most recent patient of the oncology ward. For that stent, I had made it a whopping eighteen days at home before beginning what would turn into a consecutive five month hospital stay.

A shy, oriental nurse introduced herself. She tried to provide a semblance of comfort for a disease few people understand. That is, until I was whisked into a rebound reaction from a strong laundry detergent.

Unfortunately, the reactions were not of the treat and go on variety. Emergency medications brought stability for about an hour. Despite regular bolus dosing of IV Benadryl, I had lost all foods and was unable to tolerate J tube feedings. TPN was failing too, worse than feeds, and my symptoms progressed throughout the entirety of the infusions. I went over a week subsisting solely on IV fluids (that I also reacted to). The hope was that the break from TPN and gut rest would give my body a reprieve from the reactions.

That plan was unsuccessful, as previous bouts of nutritional crises left little reserve. Starvation was imminent. The acute consequences of reactions were potentially deadly faster, making neither option very palatable. The doctors had to implement a treatment that would allow my body to accept nutrition without immediate anaphylaxis. Two years ago, as a result, I was placed on the Continuous Diphenhydramine Infusion (CDI)—a continuous infusion of IV Benadryl.

Read Diphenhydra-what? - The Continuous Benadryl Infusion.

It was a treatment my medical team did not intend to exceed past three months. After three months, my health would be much improved. I would be better. My body was supposed to have snapped out of it, or I was meant to find a successful concoction of medications to control the disease.

The CDI served (and continues to serve) its purpose: Consuming food remained futile, but J tube feedings stopped causing instant anaphylaxis. I only resort to TPN for brief flares, like when feed reactions become too severe. Even then, the TPN reactions are less in the sense that they slowly build to an ICU situation. It has not solved my weight problem though. My weight decreases regardless of intake if slightly reactive to nutritional. That tends to get me into trouble when running feeds, supplementing with TPN or lipids, and massive steroid doses do not change the number on the scale.

Things are relatively stable on the CDI. Well, as stable as the precarious mast cells of the severely afflicted can be.

Three months turned into two years and counting—two years of Benadryl infusing into my veins every second of every day, two years of treatment trials, buying time, and waiting for life to go back to how it was when I was healthier. Sick nonetheless, yet healthier.

And it has now been two years since my life changed forever—two years of being alive when, considering the circumstances, I should not be. I think that is a milestone. Still, it is difficult to celebrate this particular CDI milestone. So, I won't. I choose to celebrate life. Period.