Good Day Not Without Problems

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 happening to their friends and neighbors.

I've been saying this since the first time I developed COVID back at the very beginning of the pandemic in the first half of 2020...   

Eventually, we will experience a national health emergency at catastrophic levels.  This will be far, far worse than what we experienced at the beginning of the pandemic.  

The more often people get infected with this virus, the more damage will be done to their bodies.  More and more people will become disabled due to what today is called long-COVID and I can tell you that this country is not kind nor particularly supportive of the disabled.  Even the attitudes toward the disabled are dismissive at best.  This country is not even organized well enough to seriously help disabled people so this will be a catastrophe of immense proportions.  This will negative affect the workforce which, in turn, will negatively affect the economy.  These long-COVID disabled people will also be dying at a frightening pace at some point.  

This country has a profound history of not reacting to dire warnings until it is too late for various reasons such as "that is nonsense", "you are wrong", "can't be", "we don't have the money for that", as well as quite a few other ignorant and short-sighted reasons.  Unfortunately, I see the same happening with a long-COVID catastrophe.

I can tell you from my own decades of experience in being a disabled person in this country that this country absolutely sucks when it comes to healthcare and support for disabled people.  I now have more than two decades of experience in navigating and advocating for my healthcare so I now have a great team of doctors and have figured out how to manage this effectively.  The first five years or so were chaotic, mismanaged, misdiagnosed and needlessly dangerous as well as frustrating.  Nobody should have to experience what experienced all those years especially while feeling like they are knocking on death's door.  

As I said above, the attitudes toward disabled people in this country is shockingly shallow, selfish, disrespectful and simply abysmal.  Putting aside my decades of experience with two other chronic disabling health conditions, I can tell you from my own years of experience with long-COVID that this particular illness is a brutal, relentless, painful way to live out your remaining days.  Anyone who refuses to see this at this point is being ignorantly and blissfully blind.

Now, back to my current health update...

Overall and thankfully, over the past few days, my health has been very slowly improving enough to allow me to sleep, shower and cook a few meals albeit triggering more pain.  I still have the neurological inflammation but it is subsiding to mostly tolerable levels while at rest.  I haven't had a fever in about a week so that is good too.  My breathing problems still come and go.  I'm still coughing up thick mucus as well as blowing it out of my nose.  The mucus is so thick that I need to use a saline nasal spray to get it to come out of my nose and I am taking heavy doses of an expectorant to help clear my lungs.  The primary problem over the past three or four weeks has been neurological inflammation and this is a major concern because this pain is constant and unbearable.  The fatigue is brutal too!  

This inflammation seems to be originating at the site of my last bone marrow biopsy.  However, common sense tells me it could be and probably is originating in my lumbar spine.  I definitely have had a disk or two that were extremely painful to the touch throughout the past month.  Nerve and joint inflammation for months after COVID is nothing new for me either.  

The entire nerve from my lumbar spine (a spine with extensive damage already), across the site of my biopsy, to my hip, down through my groin, down my thigh, my knee and my shin, has been inflamed and even excruciating to the touch.  No matter what section of this nerve that I touched, it was excruciating like this whole nerve was exposed and vulnerable.  The pain was so bad for weeks that I was going from minute to minute hoping that the next minute might be better than this minute.  Thinking of what I might do beyond the next minute was shrouded in darkness.  The only thing that existed was the current minute and hope that the next minute would bring some relief.

I'm also experiencing significant weakness in this leg...  my right leg.  It cannot support my weight so I'm still hobbling around and using a cane as necessary.  Fortunately, our home is all on one level because I have trouble navigating even a single step.  

I've been taking a lot of NSAIDs in an attempt to alleviate the worst of the inflammation during this acute phase.  For the past week, I've finally been feeling well enough to be doing some light physical therapy aimed at my lumbar spine to work through the pain and recover.  This is painful and grueling physical therapy but I've been through this many times before so I know I can do it and I know it is the way to relieve pain due to herniated and bulging disks.  Today was the first day that I've cut back on the NSAIDs.  This doesn't mean the full day was a good day.  It was not.

I awoke this morning feeling fairly normal, relatively speaking.  I still had pain and my right leg is still quite weak but I was feeling better than I had during this past month.  Since I was feeling relatively well, I kept busy with a little bit of astronomy stuff this morning in preparation of the upcoming solar eclipse.  All the bending over, crouching and moving stuff around really took its toll on my inflammation though so I was ready for a bed within about two hours.  I was exhausted and in pain again.  The weakness in my right leg worsened again causing me to limp around even more pronounced than when I had started my day.

I had some leftovers heating on the stove as I prepared the couch with pillows.  After eating lunch, I laid down on the couch with an ice pack under my lumbar spine.  I awoke a few hours later.  The pain had subsided to tolerable levels again but the weakness in my right leg was still more pronounced after my nap.  I really needed that nap though...  I was exhausted.  I was asleep within about a minute of lying down!

This evening...   I'm having trouble breathing again in addition to this painful and debilitating inflammation.  All that being said, overall, today was a bit of a better day than I've had over the past month so that is good.  That crappy day I just described was a relatively good day!

After dealing with long-COVID for most of four long years, I think I can accurately claim that long-COVID absolutely sucks.