Thursday, May 18, 2017

Little Victories With Chronic Illness

For the first time since June 2015, I wore sneakers. Why, you ask? Because I am finally able to walk up the tiny hill in the backyard!


Last May commenced a huge flare. It is assumed it was provoked by an unfavorable response to a rarer treatment for Mast Cell Disease, the Continuous Famotadine Infusion. I began that treatment earlier; however, my body did not reject it until months later. The cause was not discerned immediately. It was a perplexing situation, as the medication was helping while simultaneously triggering my mast cells.

In the midst of a flare, my pediatric doctors would jokingly remark that I looked like I was drug through the streets. This was like that, but tenfold. I never knew it was possible for my health to get as bad as it did. Undoubtedly, the medication setback resulted in extensive damage. It has taken months and months to return to my baseline. Recovery has been painstakingly slow.   Lately, the days have been more tolerable. They have included a couple of good hours. I have definitely been taking advantage of them with my recent goals.

  • Sunlight  
The first of my goals is to receive sun exposure. The amount is limited, as I only stay outside for 10 minutes. Heat exacerbates POTS, causing the blood to pool to my lower extremities before I faint. Temperature, combined with UV rays, can also cause mast cell degranulation. To avoid reactions, I keep outside adventures very brief. Regardless, seeing the natural light of day is healing. The extra Vitamin D is a plus too!

  • Movement  
Next, my goal is to ‘exercise’ to gain muscle back. I got down to 81 pounds. Fat was not in excess, so I know my muscles were wasting.   Overexertion is futile, especially with my cardiovascular symptoms. The 48-hour holter monitor from last week caught episodes of Ventricular Tachycardia. An old stress test where my mast cells were triggered from exercise revealed a partial blockage of the artery, which can lead to a heart attack if I react bad enough. I should be careful. Remaining sedentary is not ideal either though!

So, walking up the hill in the backyard is one way to work on these goals. I feel as if I am finally able to make some progress. And for whatever crazy reason, after not being able to walk for most of last year, the triumph over this simple task is greater than the sense of accomplishment from an intense gym workout during my (much) healthier spells. Holding on to moments of success makes any setbacks with chronic illness easier to handle!