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

I haven't mentioned much about my health in the last few blog entries so I thought I would add an update since my health has been quite lousy in recent months.  No news definitely does not mean good news.  A select few of those who read this blog might be wondering how things are going so I figured I would add a blog entry just about my current health. To start...  I have long-COVID and actually have been struggling with long-COVID since mid-2020.  This is on top of a rare myeloproliferative disorder and extensive spinal injuries.   For those of you who may think that this long-COVID stuff is nonsense, I can advise you that this long-COVID stuff is relentless, severely debilitating and, usually, intensely painful.  Anyone who thinks long-COVID (or even COVID) is nonsense or "like the flu" or "like a cold" is an ignorant fool.  Anyone who doesn't see the dangerously dark direction this virus is headed for humanity is blissfully and selfishly blind to what is

A fter my spinal problems and walking problems on Tuesday, I thought I was doing fairly well now.  I've been walking around the house with only mild difficulty and relatively mild pain which is a great improvement over my experiences on Tuesday and the excruciating pain in the weeks prior to Tuesday.  That was great.  Then, this morning, I attempted to walk out to the mailbox... Inside our house, everything is on one level.  Plus, the house is very small so I don't have far to walk while inside the house.  We do, however, have one step off a small deck at our side door.  When I stepped off that one step, my right leg buckled under me and I almost ended up on the ground.  Then, I had one more step to traverse about eight feet later...  the same thing happened and I almost ended up lying on the ground.  From this point on, the ground was unlevel and I continued having problems keeping my right leg underneath me holding my body weight.  Clearly, this new spinal inflammation is not

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

My summers over the past few years have been mostly completely lost summers of poor health and it looks as though this summer will be the same.   I had been sick all through the last three weeks of July with what was likely and presumably COVID, yet again, and now I have the terribly inflamed joint problem starting all over again just like after the first two times I had COVID.  As if that is not enough, either I am developing a mild case of shingles or those shingles-like symptoms are related to my inflamed joints.  If so, rather than having inflamed joints lingering for months, it is more like inflamed nerves.   About five days ago, I started developing pain from my right brow up across my forehead and across my scalp to the back of my head.  It is definitely burning, overly-sensitive, and irritated skin as opposed to something under the bone like in the brain.  We initially figured that maybe the latest bout with COVID triggered shingles.   I've had the better and newest shingle

T his blog entry sat around in my drafts folder for a couple of weeks!   I guess I should finish it and publish it. My joints have been terribly and painfully inflamed for the past week or so...  knees, ankles, toes...  I spent a few days on the couch because I could not walk at all.  I was on crutches for a short while and then a cane.  Now I am just limping around.  My left elbow is beginning to get inflamed too.  Sheila already has elbow problems.  According to our doctors, these joint problems are likely related to long-COVID issues.  Sheila is dealing mostly with inflamed joints in her upper body while I am mostly dealing with inflamed joints in my lower body.  My elbow isn't feeling so great at the moment though.  We'll see how this develops. I did some work in the yard today and, by the time I finished for the day, my right foot felt was though it were broken.  I came inside, showered and then hit the couch again with an icepack.  It is feeling a bit better now...  rathe

Wow...  it was impossible to get comfortable enough to sleep last night.  My spinal injuries were painfully and debilitatingly inflamed after all of yesterday's yardwork.  I'd say the pain was in the 8-10 range on the 10 point pain scale.  At times, the good times, the pain was only an 8.  Other times, like when I try to move, the pain was pegged at around 10 and would buckle me at the knees.   Sleeping was difficult, at best.  For a long while, I simply couldn't sleep.  I eventually found a position or two that allowed a few minutes of sleep before I would need to change positions to the other position.  This wasn't until the wee hours of the morning though.  I actually thought about just getting up out of bed around this time.  It was around 5am and, typically, I would have no problem with that.  This time, however, I was thinking that if I'm finding bed extremely painful, then the couch wouldn't be any better.  Actually, sitting on the couch before we went to

I t has been about nine weeks since my old ankle injury flared and I'm still limping around wherever I go.  It is slowly improving but, as expected in any recovery, I keep getting set back in recovery whenever I attempt to do anything that requires a bit of weight to be put on my left foot.   On the positive side, I'm now doing some light exercising in an attempt to get back some flexibility in my ankle.  Actually, my whole left leg needs daily physical therapy at this point.  My left leg is now noticeably thinner than my right leg due to lack of use over the past nine weeks.  I have been slowly and carefully getting back into some very light exercising (mostly stretching) to get back to "normal".  Unfortunately, this sets me back by causing a bit of pain, inflammation and swelling again.  I sort of cycle back and forth between feeling "okay" and limping around in pain which is normal during recovery.  We're now assuming that I had a severe case of sprai

I am still residing in the living room on the couch with my left leg elevated, icing it every few hours, and trying to keep the pain in check.  This is now the end of day five on the couch.  Fun times. Yesterday morning, I was finally feeling like my ankle was beginning to heal.  I was able to put a slight bit of weight on my foot again so I figured it was a good time to attempt to shower.  Getting in and out of the tub so I can shower has been an impossible task so I was ripe for a shower by yesterday morning.  I managed to shower and then headed to the kitchen to make something for breakfast. I hobbled into the kitchen and spent some time upright preparing breakfast for myself...  back and forth in the kitchen...  back and forth between the kitchen and the couch with food and water while still hobbling with my cane in one hand...  in all, I think I was upright for about an hour. After all that standing and hobbling around with my cane, the pain was beginning to return.  After breakfa

Today, I am feeling a slight improvement to the inflammation in my left ankle.  I can now put a tiny bit of weight on my left foot which makes it a bit easier to get around with a cane.  Yesterday and last night I would have been far better off with crutches since I could not put any weight on that foot at all without pain skyrocketing instantly to a solid 10.   I managed to take a brief shower this morning although it was quite painful.  Getting in and out of the shower was the most difficult thing.  Then, shuffling around on only my right foot in the shower was painful and dangerous but I managed to shower and I was ripe for one! Yesterday, I realized that I no longer have the energy and strength to lift my body weight from sitting to standing while using only my right leg.  I needed my cane to help lift myself to a standing position.  My muscles on the right side of my body are aching.   I slept on the couch last night so I could keep my foot propped up with pillows.  The pillows ne

I've really been neglecting this blog in recent months.  Between lousy health for the past year and us staying inside our home every day for the past year, there really hasn't been much to write about during this period.   I last wrote about inflammation of my spine due to having to stop my anti-inflammatory medication.  (I was having some internal bleeding.)  The resulting inflammation in my spine and joints is now about as bad as it can get.  It is interrupting my sleep and making it difficult to just get around the house.   The other night, I sort of turned my left ankle.  I say 'sort of' because, as I was sitting at my desk, I was resting my right foot on top of my left foot while the top of my left foot was positioned so it can rest on the floor under the weight of my right foot.  About an hour into sitting this way, I realized that my left ankle would probably get inflamed so I stopped sitting that way.  In case you were wondering why someone would sit this way at

My health has been quite lousy since January. Sheila and I seem to be passing a cold and a stomach bug back and forth between us, over and over. These types of 'common colds' always send my mast cells into a hyperactive tailspin so I'm having great difficulty focusing on anything because my thought processes are a muddled mess! I have a dozen different projects bouncing around in my head all at once. Most of these projects I actually want to accomplish... some I  need to accomplish as soon as I am feeling well enough... and all of these projects are occupying my thoughts at any given moment. If I'm not struggling with nausea and spending time in the bathroom, I'm struggling with pain and overwhelming fatigue. Sheila hasn't been much better lately. I feel as though I am spending all my time in bed, sleeping away the winter as projects keep backing up and my to-do list gets longer and longer. My spinal injuries are terribly inflamed. I assume much of t

What a crappy, lousy, miserable day due to intense spinal pain, inflammation, bone pain and some resulting Systemic Mastocytosis issues... that is about all I can say.

As one would expect, my pain level definitely affects my mood. As my pain increases, my mood worsens exponentially.   Over the past few days I have experienced increasing pain every hour of every day. The pain just seems to get worse as the day wears on and does not subside after sleep. I slept for a solid 11 hours last night and awoke feeling worse than I have all week.  So, you may be wondering... Where is my pain? Quite simply, it is everywhere. My bones hurt deep, deep within the core of each bone but particularly my longer bones. My joints hurt. Every part of my body hurts to the touch. My skin hurts.  The odd thing is that this level of pain did not register in my brain until I noticed a serious change in my demeanor and mood. The moment I noticed I was easily angered was the moment I noticed how bad my pain had gotten. You see... I am in pain all the time even on a good day. My spinal injuries always hurt...  every moment of every day. Quite often I get bone and joint pa

As I wrote in my previous blog entry, my night last night was less than stellar as a result of some pretty lousy health. It turns out that today has been no better. Actually, today has been worse than all the time spent in the bathroom in the middle of the night last night. I've had difficulty breathing. I've been very weak. My bones hurt like only a Systemic Mastocytosis patient could understand. I'm overwhelmingly exhausted. I'm nauseated. And, after lunch, my throat was inflamed and a bit swollen. Then I passed out.  When I awoke a few hours later, all the symptoms were still present so I knew it was time for my emergency medications.  I've needed epinephrine today and I also needed to take some other emergency medications to try to stabilize my mast cells. Most of these medications cause drowsiness. Compounding this drowsiness issue is the fact that this huge cellular reaction inside my body causes indescribable fatigue also.  I really hate taking these

This past week has been an unbearable week of inflammation and debilitating pain. Needless to say, getting anything accomplished this week was virtually impossible.   Standing hurt, sitting hurt, laying hurt and sleeping long enough to keep my health stable was very difficult because the pain kept me awake. Understandably, my mood was negatively impacted. My ability to stay focused on anything for longer than a few short minutes was impossible. What an absolutely frustrating and excruciatingly painful week.  My entire spine was so inflamed it seemed like it was swollen and on fire... constantly... steadily... it burned consistently like the sun.  Each of the areas of my spine that have been injured during my career hurt so badly that it felt as though I had a large swollen red bump the size of a handball at each point of injury.  For those who aren't aware, after two line-of-duty spinal injuries I am left with two herniated disks, four bulging disks, six compressed disks, two a

I have been very fortunate this Christmas season!  We have had an exceptionally busy, hectic and exhausting December and, for the most part, my health held up surprisingly well. Now, however, we are a few days past Christmas and my health has crashed... and it has crashed spectacularly. I had a few bouts with anaphylaxis causing dizziness, palpitations, tachycardia, and breathing difficulties which all leads to exhaustion.  Whenever my heart responds to anaphylaxis, my heart-rate jumps to the 120-180 beats per minute range and it can stay there for an hour or two. Having your heart-rate at this chest pounding level is similar to running for a couple of hours... or playing a basketball game for a couple of hours... or any other strenuous activity for hours.  I am left feeling exhausted and my entire body aches for days. The degranulation of mast cells which caused this anaphylaxia also causes nerve irritation and inflammation.  Needless to say, in addition to the overwhelming fatigu

Far too often, I completely miss the signs preceding Systemic Mastocytosis episodes.  Today was another one of these times of missed clues. I had a few dizzy spells late in the afternoon...  This should have been a huge indicator of failing health. I strayed from my strict diet today by eating leftovers for lunch followed by processed food and condiments which are highly restricted for dinner...   I know better and after straying from my strict diet for two consecutive meals I should have preempted any decline in health with extra medications. I awoke from my three hour afternoon nap in a very warm bedroom...   the temperature in the bedroom was in the upper 70s which alone is more than enough to cause anaphylaxia and a violent reaction.  I should have known this would lead to crashing health. Any one of these things should have caused me to immediately jump on taking extra medications...  powerful medications...  and to collect my emergency medications.  I think I have fallen

For the most part, healthwise, I had a good week while we were at the lake house last week.  And, the previous week was pretty good too.  I am definitely paying the price for all that good health now though! " All that good health"...  That seems to imply that I had years of good health...  or even months...  No, this was just a matter of 12 days or so. A body burdened with a myeloproliferative neoplasm such as Systemic Mastocytosis rarely goes longer than a few days without some debilitating symptomatology.  Having 12 relatively good days was a blessing. Unfortunately, when I have a few "good" days, I tend to overdo it.  I don't nap...  I stray from my specialized diet which minimizes mast cell degranulation...  I become active which causes a rise in body temperature which causes idiopathic anaphylaxia...  activity also causes inflammation and pain in my spine due to all my spinal injuries (for those unfamiliar with my spinal injuries, the injuries inclu

We are back home from the lake house now.  Although it was a great week on Lake Groton and I prepared for this week for months by being vigilant with my daily physical therapy (a daily ritual since my second line-of-duty spinal injury in 1998), it has really taken a lot out of me. My spine is inflamed from dragging around kayaks and the sailboat.  Packing bags into the car didn't help either!  As bad as the spinal pain is, problems associated with my Systemic Mastocytosis are far worse and much more debilitating. Wearing myself down is one of the worst things I can do to my health today and has the same effect on all Systemic Mastocytosis patients.  The absolute worst thing we can do is to miss a dose of medications.  Wearing oneself down takes a close second though and requires the longest amount of time to recover. It just so happens that I did miss a dose of medications on our first night at the lake.  Our daily lifestyle changed so much at the lake that my medications wer