Some Notes About Recent Health

Other than writing about my badly sprained ankle, I haven't written much about my health lately so I figured I should attempt to write some stuff down.  

Overall, my typical mast cell disease stuff has been 'typical'.  That means occasional anaphylaxic symptoms, breathing difficulties, dizziness, lightheadedness, and a lot of joint and bone pain.  Plus, regular gastro-intestinal problems, nausea, and too much time spent in a bathroom.  

What has been worse for the past year...  far worse...  is the brain fog.  This may have been compounded by fighting off COVID-19 a year ago.  I have had brain fog throughout all my mast cell disease but it has been far, far worse in recent months.  I become non-functional for anything other than simply surviving from day to day.  

While fighting off the virus last year, I also had consistent problems with vision and hearing.  My eyes were swollen and it seemed like I had a torn retina but that was probably due to the swelling in my eyes.  I often had ringing in my ears too.  These problems, however, have almost disappeared in recent months, fortunately.  

My gastro-intestinal problems have been less severe during this period of ankle problems and internal bleeding problems.  I think this is due to two reasons.  First, I'm not nearly as active since having the sprained ankle.  Less moving around, less raising body temperature, less vibration, always seems to lessen my intestinal issues.  Don't get me wrong, I am still finding myself in the bathroom at a moment's notice at any time of the day but it is now only happening about once a week, or even slightly less often.  

I believe the other reason for the less frequent and less severe intestinal issues over the past couple of months is due to the dietary changes I've made recently.  These dietary changes were solely due to the internal bleeding problem I had.  I moved toward less food, bland dull food, less of all the foods known to be high in histamine, no caffeine.  I also moved toward drinking only water during this period.  I hate drinking water so that should tell you something about how lousy I had been feeling and how concerned I'd been about these particular recent health issues.  

I have had to change up my medication regimen too in the past couple of months.  First, the internal bleeding issue prompted dropping all anti-inflammatory medications as well as my Prostoglandin D2 blockers.  This caused a significant increase in debilitating pain and increased flushing.  As one would expect, the significant increase in pain had helped to suppress my appetite. 

The pandemic caused a shortage of my most effective medication too.  This happens to be my most expensive medication at around $35,000/year.  I haven't been able to get this medication so I had to switch to a generic form of the drug.  I had tried a generic form of this particular drug a number of years ago and it proved to be ineffective for me.  Fortunately, a new pharmaceutical company is producing this drug now too so I was able to try this drug and it seems to be working just fine lately.  

One of my intestinal drugs has been removed from the market in the US this year so I am now purchasing that on my own from a pharmacy in Canada without insurance coverage.  This has been working just fine for me too although I'm not too happy about the hit to the bank account.  

Also due to the pandemic, my inhaler and Singulair have been difficult to get consistently.  This hasn't helped my breathing difficulties at all nor my aggravation level when I must deal with my medications which happens to be at least four times each day.

It is bad enough that I had to struggle through the COVID-19 virus for four or five months in 2020.  Now I am still struggling with drug supply issues due to the pandemic.  This country is truly in terrible shape.  Also, and I've been saying this since procuring this mast cell disease a couple of decades ago, our healthcare system is an embarrassment to say the least and to be kind.  The pandemic is making this more obvious to even healthy people today but I've been trying to get people to listen for many, many years.  

I'm beginning to fall asleep at my computer so I should close this blog entry.