Scattered Thoughts . . .

I had been very slowly recovering from my long-lingering COVID symptoms but things drastically worsened again this past weekend. We had about 13 inches of snow Friday night into Saturday so we had to head outside to at least clear off the roof especially since the snow wasn't supposed to stop falling for another 12 hours or so.  We didn't need a collapsed roof on top of all my health problems so we headed outside for a painful couple of hours.  It turns out we had another three inches of snow through the night on Saturday night after we cleared off the roof so it is good that we took care of the roof when we did. I started up the snowblower and made my way toward the driveway.  I had just broken through the deep snow with one slowblower-width path when it started making a terrible noise.  I noticed that one of the four augers was no longer held in place with its pin.  Fortunately, I had two spares on the control panel of the snowblower so that was a quick fix.  I started up th

T his morning, Sheila and I picked up her dad so we could drive him to the airport.  He's heading to DeSantisland for a long visit with some family, friends and Disney.  This part of our trip went relatively well but it was not without a few concerning problems. While I was moving my medications and ice packs to the car for our drive northward toward Burlington, my right leg kept buckling under me.  In an instant, periodically, I was briefly losing the ability to control my leg.  This worsened the longer we were away from home.  Losing control of your legs when you have a spinal issue is not a good thing.  It is not good physically.  It is not good mentally.  It is not good emotionally.  This was a new development that is a bit concerning.   Unfortunately, I've been down this road before when I was originally recovering from my first and second line-of-duty spinal injuries.  At times various times after my injuries, I could not move my legs nor could I walk.  Regardless, this p

M y morning started out better than I have experienced since we were in Manhattan last month which was quite a relief for a change.  I was feeling well and I was up an hour before Sheila so I managed to get a few little things accomplished around the house that I had been putting off for more than three weeks because I had been so sick.  I showered and then Sheila got up out of bed. After just an hour of little everyday things around the house that everyone takes for granted without a single thought of how they will accomplish it, that was about it for me. I started feeling exhausted.  I was starving.  Before long, I was dizzy, I was having more difficulty breathing, my vision was narrowing and my peripheral vision was filled with sparkly grayness.  I've experienced this many times, especially in the past year after my previous COVID infection, so I quickly identified it as the cascading symptoms of anaphylaxis.  I grabbed my epinephrine and some of my emergency medications and did

I finally managed to slow down my runny nose and watery eyes enough to get some sleep.  That was brutal for a few days!  Pumping a bunch of extra H1 blocker anti-histamines helped with this significantly.   Because I was experiencing the cascading anaphylaxis symptoms (twice in two days), I decided to use different types of H1 blockers to stabilize my body...   Benadryl, Periactin (a high dose emergency medication), cold capsules...  I would alternate from one to the next every two hours.  This seemed to knock down the cold/flu-like symptoms as well as keep me away from anaphylaxis for the past day so that is good.   All those extra anti-histamines also helped me get some sleep.  I was exceptionally drowsy from the medications.  I was also exhausted from the illness but the drowsiness really knocked me out.  I slept all day yesterday other than getting up to use the bathroom and eat.  Then I slept for 11 hours last night.   I feel significantly better today but I'm still stuck wit

T he past two nights have been quite lousy.  My health has been so lousy that I needed to use epinephrine during the night last night.   During my previous bouts of COVID, my doctors have assumed that COVID is causing an undesired response in my primary illness.  It causes inflammation which causes a response by my mast cells.  I already have a life threatening issue with inflammation and mast cells so anything that exasperates this is not a good thing.  So, in response, I need to throw medications at both problems.   I awoke in the middle of the night after only an hour or two of sleep both last night and the night before last.  I was having difficulty breathing both nights.  This was clearly a case of needing to clear out my lungs because, as I would do some coughing and huffing, I could get a little bit of phlegm to come up and that always seemed to help my breathing enough to be able to get back to sleep. Last night, however, regardless of some phlegm coming up from my lungs, I was

O verall, I have felt like I was recovering fairly steadily over the past two and a half weeks since my emergency hospital visit.  There was a bit of seesawing back and forth but I took a couple of significant steps backward last night.  Today, I'm actually feeling as though I am back at square one which would be the day after coming home from the hospital. At dinnertime last night, Sheila and I headed to Shaw's to do our weekly food shopping.  I hadn't done this since before my ambulance ride to the hospital a few weeks ago so this would be the first big test of my current health and recovery.   Although the store is only about seven minutes away, I started feeling health problems coming on about halfway there.  It started with some relatively minor difficulty breathing.  I used my inhaler in an attempt to stay ahead of the problem.  Also, I "just didn't feel right".  I couldn't put my finger on what exactly wasn't right but I knew I didn't feel r

A s I wrote in a previous blog entry, we had cancelled our plans for this past weekend and decided to do something in Waterbury that would be far less taxing on my body.  Unfortunately, it turns out that I couldn't even do that. We previously cancelled our plans for going out of town for an annual train show.  This is a very big event that requires many miles of walking each day.  It is crowded.  It is often hot in each of the four large buildings.  I knew my health was not ready for that.  Actually, I still didn't trust my health enough to simply ride in a car for three hours to get to the show.  A few days before the event, we cancelled our plans and decided to stay home. Another concern with going out of town was there is still a good chance that I might struggle with anaphylaxis while we are on the road traveling.  Then, we would need to find a hospital very quickly.  The risk was too high so we cancelled the out of town plans.  Our grandson, Lukey, had two hockey games her

Yesterday, for the most part, was a better day, healthwise, than I've had in a long while.  I still did have problems at one point last night but, overall, it was my best health day since before my hospital visit.   I had another relatively short and mild episode of breathing difficulty last night.  I was cooking dinner and had some breathing issues.  I definitely can't take the heat in the kitchen!  I do need to prepare meals though so I try to minimize my health problems by leaving the kitchen while I'm cooking.  I return a couple of minutes later to check on the meal, then leave again to the living room where it is cooler.  Regardless, I still ended up having some breathing issues last night...  again. I took some extra medications again before heading the bed and I think that helped.  I didn't have any breathing problems after that.  Another plus was that the medication I took makes me drowsy so I ended up sleeping through the night.  Actually, I slept for about 11

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

L ast night was pretty brutal.   Sheila and I were watching a Dayton basketball game on television and I started to experience breathing problems.  I grabbed my inhaler and just assumed that a couple of uses of that would take care of the problem.  It didn't.  I used my inhaler again.  That still didn't help and my health continued to spiral downward. I was feeling slightly dizzy and lightheaded very quickly.  Then I started getting hot so I knew things were worsening and getting bad.  My health deteriorated so quickly and severely that I moved to the living room floor right in front of the Christmas tree for two reasons...  first, I was feeling like I might lose consciousness and I didn't want to fall over and hit something on the way down.  I also felt like the thing to do was to counter the anaphylaxis by raising my feet higher than my head, keeping as much blood as possible in my head.  I was hoping that between using epinephrine and raising my feet, that my body would

Early last week was quite lousy as far as my health goes.  I was down doing absolutely nothing for three days.  As the week progressed, I started to feel a bit more like myself.  By Friday, I was feeling better than I had in recent memory.  Unfortunately, that was short lived, very short lived, as it usually is.   Feeling as good as I was, I actually did think that maybe my health was about to crash.  This is the usual thing for me.  I feel better than I have in a long while and then, usually within hours, my health suddenly plunges into anaphylaxis.  This time I felt really good through Thursday, then even better on Friday...  I must have been feeling pretty good on Saturday because I don't remember any remarkable problems.  I think I was thinking that with all the extra medications I took earlier in the week, I should be feeling better than I have in quite a while so I sort of pushed this old pattern out of my thoughts.   I'm still hobbling around with my knee injury.  Even t