If you’ve ever been downhill skiing, you’ve likely experienced a “yard sale”. A yard sale is when you not only crash into the snow, but your equipment catapults in every direction. More than a few times, I’ve longingly watched one ski sail down the mountain, while trying to muster the energy to untangle my limbs and hike 30 feet up the mountain for my poles.
The last few weeks have felt like I was bombing a mountain, speeding out of control toward an inevitable crash. I started a new medication, cromolyn sodium – my 7th medication trial. I started small, squirting one vial of the liquid medication into 8 oz. of water before lunch every day. (Super weird, if you ask me.) Although I received ample warning that the drug takes time to adapt to, many mast cell patients find it to be life-changing.
Well, it changed my life – for the worse. For weeks, I persisted despite severe reactions, telling myself my body needed more time. But then the reactions became debilitating:
- I temporarily lost my vision, saw flashing lights, and half of my body went numb. Several panicked minutes later, I remembered this is my body’s manifestation of a migraine.
- My chest pain became so unbearable I thought I might have to go to the hospital even though I knew I wasn’t having a heart attack.
- I couldn’t walk across my condo at times because my bone pain became so excruciating.
My yard sale moment was when I realized, flat on my back, I was out of food and toilet paper, and could no longer work, let alone watch TV. On a ski mountain, for the most part, you have to pull yourself back together. Sometimes, a kind passerby will throw you a piece of your gear; in this case, a friend brought me a rotisserie chicken. And then I slowly began recompose my body and life, quitting the cromolyn sodium and vowing never to ski that trail again. My doctor agreed.
It’s common for mast cell patients to react poorly to new medication and every patient is different. This is why, my doctor says, finding the best treatment can take many years.
I finally began to feel better yesterday. My swelling has decreased significantly. I have mobility and a chin again.
UPDATE: I started the brand name version, Gastrocrom and I reacted much less. However, in the end, I gave up on cromolyn sodium. So frustrating.