Scattered Thoughts . . .

This evening was the last dose of my steroid therapy.  We're hoping this short term therapy will be enough to help me recover from the severe systemic mastocytosis anaphylactic episode I had last week and has been plaguing me on and off for the past week. The headaches which are perhaps the most common side effect of Prednisone started yesterday for me.  I had a headache all through the night last night and today the headache has been worse.  Needless to say, I'm glad that tonight was my last dose.   On the positive side, I am feeling a little more stable this evening.  I don't think I've had any breathing problems since last night...  so...  that would be the first 24 hour period without a seesawing back toward an anaphylactic low.  So, that is definitely good news.   I suspect the headaches will linger for a couple or few days and taper off slowly.  Headaches can be prevalent in systemic mastocytosis too but I'm hoping my headaches are due to the Prednisone since

I 'm still recovering from my hospital visit a week ago and I'm still feeling lousy but I am feeling just barely well enough to also be a bit bored.   This morning, I decided to pull out a small telescope, a few eyepieces and a camera to shoot a few photos through our living room window.  I needed something different to do that wouldn't wear me down completely.  I would have preferred to look at something in the sky but we very rarely see anything but clouds in the sky here between November and March so I'm stuck viewing terrestial objects rather than astronomical objects.  _________________________________________________________________ First, an update on my health...  On the positive side, I am feeling slightly better with each passing day since starting on the steroid therapy so that is good.  I am still feeling lousy though.  I'm still seesawing toward anaphylaxis with breathing difficulties occasionally and then recovering an hour or so later.  This seesawing

T his morning, Sheila and I headed into town for an appointment with my primary care doctor.  I was feeling pretty lousy but the drive is a short one so it didn't take too much out of me.  I definitely did not want to go though.  At this point, I'm pretty sick and tired of medical problems being front and center in my life so having another medical appointment did not thrill me in the least. When my doctor came into the examining room, Sheila and I were both surprised to learn that she had already discussed my case with my oncologist before we arrived this morning!  She knew things that I had discussed with my oncologist last night and it was obvious they talked about changing some of my medications.  This sort of effective communication is great but it is also a stark reminder that my health problems are serious.   The other sign of the seriousness of my health is that my oncologist worked on my case Monday afternoon and into Monday evening.  She was still contacting me and my

A fter my ambulance ride to the Emergency Department at the University of Vermont Medical Center on Friday night, my Oncologist feels it is time for some additional proactive medical treatment and even some additional tests.   My rather violent mast cell episode which included multiple episodes of anaphylaxis on Friday night and the long amount of time it is taking for my body to stabilize again is a bit concerning.  Also, considering that my blood counts have been elevating farther and farther out of normal over the past few years, it is time to take a look at my bone marrow again and run a few very specific tests in addition to the usual cell counts and cell morphology assessments.   We discussed a bunch of stuff starting with what might have triggered this life-threatening episode as well as the episode itself.  These kinds of episodes are hard to describe accurately but probably the most accurate single descriptive word I can think of is " violent ".   These unique system

M y body is having some difficulty recovering from this latest mast cell episode of anaphylaxis.  While I was napping this afternoon, my oncologist wrote to me advising to start on steroid therapy.  Apparently, I'll need that added to all my usual medications to help recover.   I'm not feeling well enough to write much of anything at the moment so I'll just leave this blog entry at...  we'll see how that goes...

A lthough we didn't need to head to the hospital again last night, it was still a rather lousy night.  I felt lousy enough that wasn't sure I wouldn't be back at the hospital again. After arriving home from the hospital yesterday morning, we each ate something small.  Sheila fell asleep on the couch immediately after eating.  I fought falling asleep for a couple of hours fearing that I might slip back into severe anaphylaxis while sleeping.  I eventually got about four hours of sleep though.   We ate a bit again in the late afternoon.  I was feeling "okay"...  not great but not terrible.  I was sore from all the violent shivering the night before and exhausted from a lack of sleep and all my body went through with the multiple bouts of anaphylaxis. By early evening on Saturday, I wasn't feeling all that great again.  I was occasionally gasping for breath and I was now crampy, nauseated, and experiencing diarrhea...  all typical mast cell problems associated wi