2015

Wake up, throw up, have the shakes (MCAS)

I had it in my mind that the worst of the mast cell disease (MCAS) side effects didn’t kick in until later in 2015, but I just saw this memory on Facebook from January 3, 2015:

“The day started off with a bad dream, after which I woke up, threw up, and had the shakes for long time. Fortunately it got much better as the day went on, and I eventually enjoyed a belated Christmas celebration with friends and family.”

I remember the vomiting and shakes started long before this – I learned to keep a trash can by the bedside – so those symptoms would have been well back into 2014.

A farmer plowing a field alvin May 20, 2018 - 7:05pm

A farmer plowing a field in Palmer, Alaska on May 20, 2015.

At 10:30 pm.

Living another lifetime in a dream

I meditated last night until I started falling asleep. I kept trying to fight through the sleepiness, but it was to no avail.

I got up, went to bed, and almost immediately had one of those “You’re not Al, you’re somebody else” dream or dream-like experiences (like when Captain Picard went unconscious on the bridge and lived another life). After a long period of time I woke up in a bed with tears streaming down my cheeks because of what had just happened. (A friend died in my arms.) I sat up, looked around, but couldn’t figure out who or where I was. With my body/brain/mind rejecting the situation, I barfed into the trash can by the bedside. I was glad someone put that there.

After somewhere between thirty and ninety seconds I remembered who/where I am. With my body shaking as usual after one of these experiences, and not wanting to go back to sleep, I bundled up and went for a long, cold, after-midnight November walk. The clear sky was beautiful, and I was glad to be alive, even if I felt like crap. I made a note to myself that I need to take midnight walks more often, I appreciate the solitude.

~ November 12, 2015

Woke up with a swollen brain

I woke up this morning and immediately knew something was wrong. I ran into the bathroom, turned on the light, looked in the mirror, and saw that my head looked a lot like a Talosian from Star Trek. “Oh crap,” I thought, “I’m having an allergic reaction to this new medication.” So I went flying out of the apartment and down the hall, yelling, “Help! Someone call 911! Does anyone have some Benadryl?”

Fortunately it was just another dream.

Self-administering intravenous medicine with a PICC Line

April 24, 2015: I don’t know how you spend your mornings, but these days I spend 40 minutes each morning administering intravenous medicine to myself via a PICC Line that has been inserted/installed in my arm and chest. You can read about the whole experience in my diverticulitis diary if you’d like.

(April 24, 2017: Today marks the 11th consecutive month that I haven’t required a trip to the ER, which is pretty much a record for my last four years.)

Feeling like I have been drugged

When I was very sick in 2015-2016, I used to tell my doctors it felt like I had been “drugged.” When I could see that they couldn’t understand or believe that, I’d tell them that it felt the way you feel after surgery, groggy and woozy.

For the most of this year I’ve been eating very well, but yesterday I went to see a movie (Logan) and had some popcorn. Shortly after eating the popcorn I started to feel sick, and today I feel like I’ve been drugged.

This — as I have learned — is life with mast cell activation disease, known as MCAD or MCAS.