Scattered Thoughts . . .

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

This week has been quite brutal.   My usual bone pain has recently moved to a level so painful that I, myself, am unable to touch my long bones especially my femurs and tibias.  At rest, the pain is in the seven out of ten range.  When I lightly touch my femur or tibia, the pain skyrockets off the charts.   I'm also overwhelmingly exhausted.  I slept half the morning today and most of the afternoon.  My excruciating level of pain isn't helping me get some useful rest at all, of course. My breathing hasn't been the best either which also adds to the fatigue problem.   My fevers continue to come and go too.   Needless to say, I'm not accomplishing much of anything over the past couple of months.  When things get this bad, I attempt to do a lot of research so that is what I have been doing most of my waking time.  Well...  most of my waking time (which isn't much time at all) is probably spent preparing and cooking meals followed by the time spent researching.  I'v

F irst, I'll address Sheila's current health with COVID...  She has a low grade fever coming and going all through the day.  She's exhausted.  She has a mild sore throat and she is coughing and sneezing with a runny nose.   Other than the fatigue which is noticeably affecting her, she seems to be doing better than she did with the flu a month ago.  I can only assume she is doing relatively well with this bout of COVID due to being current in her vaccinations and boosters.   The really frustrating thing is that when she contacted her doctor's office this morning they pretty much did nothing for her because she has not tested positive for COVID.  The fact that I have tested positive and she is symptomatic apparently means nothing for getting treatment.  She is over 50 years old so she is in the higher risk category so common sense is telling me that her doctor's office should have jumped on getting her on Paxlovid since she is symptomatic and I tested positive in the

I had a medical appointment today to discuss my medications as well as some of my more bothersome current health problems especially my ongoing breathing issues.  The appointment went well, I suppose, and we added a new medication in an attempt to get my breathing issues under control.  I have another follow-up appointment in a month to see if there has been any improvement in my breathing. So, the main thing today was about my continued breathing issues.  Since my last bout of COVID, my breathing has been terrible.  I seem to be slowly...  very slowly...  improving but this has been a significant and debilitating problem for the past eight months. Consequently, I have been using my rescue inhaler two to three times every day.  My doctor would like to get this use down to no more than twice each week so I'll be starting on a corticosteroid inhaler, taken twice a day, as soon as my pharmacy can fill the prescription.   The general consensus is that my last bout of COVID has affected

I figured I would add a short health update here this evening.   I'm still waiting on some of the results from the bone marrow biopsy to come back but I think most of the results have come back at this point.  One pathology report is actually hidden from me and has been hidden from me for the past week which likely means there is something in that particular report that needs to be discussed (ie, not the best of news).  I meet with my oncologist again in three weeks, I think...  maybe in two weeks.  For some reason, the 18th of April is standing out in my mind though so it is probably in three weeks.  Naturally, until I meet with my oncologist, I will have no definitive answers.  Actually, I still may not get any definitive answers when I meet with her since we're (well, really our health professionals) still learning about this crappy illness.   That being said, there are some concerning test results that have come back since my biopsy.  Some of my numbers are worse than when

W e had plans to head out of town to Saratoga this coming weekend...  actually, tomorrow through Monday.  Lukey has a hockey tournament in Saratoga so that was our primary reason for this trip.  We also enjoy trips to the Adirondack Mountains anyway and there is a nice inn in Saratoga that we like so we immediately made reservations when we learned of the hockey tournament.   Actually, back in October, we made reservations at this inn within minutes of learning of the hockey tournament! Unfortunately, earlier in the week, I had a lousy night as well as a pretty lousy following day.  I was having great difficulty breathing again.  This was followed by some time spent in the bathroom.  The good news is that my health didn't spiral down into anaphylaxis this time but my health was lousy enough to make me want/need to stick close to home. Needless to say, I simply do not trust my health to head out of town.  The three hour car ride would likely trigger dangerous health problems.  Then

I awoke again this morning having difficulty breathing.  Yesterday was a pretty good day but the "good health" didn't last long...  only around 47 hours.   This morning's difficulty breathing wasn't what I would call a dire emergency nor did any other symptom(s) develop.  If one additional symptom had appeared, then it would have become an emergency.  My rescue inhaler seemed to help this morning so that is good.  I then took my usual morning medications and added an extra H1 Blocker into the mix.  So, that is two mornings approximately 48 hours apart that I awoke this way.  It is not the most pleasant way to be awoken.  I think this might be due to the long period of time through the night putting more time between doses of medications.  This would also be a sign that my mast cells aren't getting enough medications to stabilize them for longer periods.  Or, maybe a generic medication isn't strong enough compared to a brand-name medication.  Of course, my

W e had planned to go to Kenzie's figure skating dress rehearsal yesterday.  I had been feeling fairly well on Friday and Saturday so it was looking like I would be able to attend this event.   I packed up my camera gear so I could take some photos, dressed appropriately for a cold ice rink, and then we headed out to the car.  Within about five minutes of our drive, I started having breathing difficulties again.  I waited another five minutes to see if my health would settle down and then I told Sheila we should turn around and head home.  I waited until just before we got on the highway.  There is a roundabout there at the highway overpass so we just turned around at the roundabout and headed back home.  I wasn't feeling so lousy that I would need help so I felt I could stay home alone this time.  I told Sheila that she should go to Kenzie's figure skating event without me so she just dropped me off at the house and then hit the road again.  When I got inside the house, I

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

W e had some pretty consistent furnace problems a few days ago.  We had to call in a service technician after-hours and then he had to return with the more parts the following day.   We're still experiencing a very intermittent problem though that is causing the ignition to kick on again while running.  We have another visit scheduled as soon as possible which isn't until next Thursday.  They are scheduling a week out!   My theory is that it sounds like the burner runs out of fuel for a split second and the ignition kicks on (we hear it click on)...  then burning starts again and the ignition kicks off (we hear a dull thump and another click).  This all happens in a split second.  So, maybe there are some small scattered air bubbles getting in the line intermittently?  Or a partially sooty photocell?  Or, is it possible that the oil control ignition is faulty?  The service technician had to replace our pump along with a couple of other things but replacing the pump required ble

U sually, my health worsens while I'm awake and, more often than not, when attempting to do things.  Any activity (ie, "doing things", raises my body core temperature and that is a significant trigger for poor health) is a major trigger for me as is straying from my long list of dietary restrictions and limits.  The temperature of my environment is also a big trigger.  Being in warm environments for more than 20 minutes or so is a problem.  Anyway, my health usually worsens during my waking hours.  Sometimes, however, for whatever reason (this is the unexplained, idiopathic part of this rare illness), poor health and sometimes even dangerously poor health is triggered while I am sleeping and the middle of the night last night was one of those nights.  Since the bedroom was only about 62° through the night, I know that a warm environment was not my trigger this time.  In this case, it seems it was simply an idiopathic triggering of poor health. I was having this dream that

This past week or so has been rather miserable for me.  Pain has been my primary complaint followed by overwhelming fatigue coming in a close second. I am still off my feet most of the time   due to aggravating my knee injury while cutting the lawn last Friday.  The swelling is still slowly receding but my knee is not yet anywhere near ready to jump back into getting anything accomplished while on my feet.  I limp to the bathroom then limp back to the couch.   I'm doing a lot of sleeping...  well...  some sleeping and a lot of tossing and turning.  The pain is keeping me from sleeping all that well.  At this point, the lawn needs cutting again but I know my knee cannot handle that yet without making my knee worse...  again. My spinal pain is worse than usual but that really isn't unexpected since I'm not moving around as much as I should.  I'm also not doing any of my usual daily physical therapy because I'm staying off my knee.  The spinal pain gets so bad that bre

T he weather has been horrendous anyway but my health has really slowed down any sort of chance of being productive over the past week and a half or so.  I think the rainy, damp, wet weather may be playing into the amount of pain I'm in all day long so I suppose it does have some bearing on my health.   My main issue is pain...  joint pain, bone pain, spinal pain.  My sprained left ankle (since January) has worsened in this damp weather so I'm limping a bit due to that.  My right knee is still a problem even though it is better than it was a month ago.  The pain in these two joints alone is enough to keep me up through the night.  I also have nagging, relentless bone pain.  My extensive spinal injuries are always worse in periods of damp, wet weather too so my spinal pain has been worse lately as well.   The pain wears me down and causes sleep issues so then there is overwhelming fatigue added into the mix as well.  I just want to sleep.  Well...  I suppose I really want to sle

I've been feeling rather lousy for the past week or more so it was not much of a surprise when I quickly realized this morning that today wasn't going to be much better.  For the most part, I've been extremely fatigued and inexplicably weak over the past week.  My usual bone, joint and spinal pain has been far worse as well.  I have pain all day every day but far too often this pain dips into severely debilitating levels.  This is where my health has been lately.   I've also been feeling "not right".  Sometimes I just can't put my finger on what is wrong.  All I know is I don't feel right.  I think this is usually due to multiple symptoms spiraling down into the debilitating levels but no single symptom seems to stand out.  Regardless of why I feel this way, I have been feeling this way lately.  Late this morning, I began having some difficulty breathing.  No red flags were waving in my head though because this is a common occurrence in warm environmen

O ther 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. 

The other night, around the time we were heading to bed, I started having typical mast cell disease breathing difficulties again only days after another miserable night of breathing difficulties.   This is a fairly common symptom for my primary illness so, at this point, common symptoms like breathing problems alone don't raise any red flags.  If a second symptoms appears while struggling with the first, then that does raise red flags which indicates the start of a cascading of symptoms and I need to start on emergency medications but that didn't happen the other night.  I was just experiencing what I would call and felt were moderate breathing difficulties. Sheila reminded me to check my O2 saturation level...  so I did and it was at 87%.  That may seem okay and a decent number but it is actually considered very low.  They say that normal breathing is in the 98-100% range.  "Moderate" breathing difficulties are experienced in the range of ± 94%.  Once you get down t

What a miserable, lousy day today has been.  Sheila did a fairly quick and, thankfully, very uneventful recovery from her colonoscopy yesterday but my health crashed sometime between yesterday and today.   I spent the morning sleeping on the couch because I had absolutely no energy and I was overwhelmingly fatigued.  Then I awoke around 2pm having great difficulty breathing.  I took some extra medications, used my inhaler but neither seemed to make much of a difference.  My inhaler rarely helps and today was no exception.  Personally, I think it is because the cause of my breathing problems is not related to asthma but related to anaphylaxis.  Then again, I don't really know the specifics of what happens in the lungs with this illness or with asthma.  All I know is it becomes very difficult to breath at times and my inhaler rarely, if ever, helps my breathing.  Anyway, today, my breathing was poor and the inhaler did not help at all.   I'm just feeling lousy.  I'm havin

I have one of those illnesses that is actually quite consistent.  The symptoms are transient through time, space and frequency but the illness itself is quite consistent.  In order to get a few good days, I must pay the price with a few bad days.  Unfortunately, it is not an even trade-off...  I pay the price of a few good days by having to endure many, many days of bad days.  I'm in that low part of the trade-off cycle now.   On the last two days of our cross country train journey (Monday and Tuesday), I had an annoying sore throat.  I've had worse sore throats but it was consistent and wouldn't go away.  I was hoping that I was just a bit dehydrated since I was avoiding an excess of fluids due to availability of bathrooms.  Unfortunately, I would quickly realize that the sore throat was not due to slight dehydration.  Although dehydration can bring on other problems, that would have been a more simple problem to resolve...  pump fluids either orally or through IV. O

Two of my doctors have been advising me and even pressuring me to get a colonoscopy for quite some time. I attempted this a few years ago but, after discussing my health issues with the doctor who would be doing the procedure, we decided the risk was too high so we didn't even attempt it.  Now, I have a new mast cell specialist and he had referred me to a doctor to give a colonoscopy another shot. I was scheduled for late this afternoon.   In the meantime while waiting for this appointment date to arrive, I had another visit with my mast cell specialist. We briefly discussed how to manage my medications in the week leading up to the colonoscopy and we had a tentative plan in place. To be honest, I wasn't too optimistic about my health holding up through this procedure but I agreed to give it a try. The last thing I want to do is come across as non-compliant because I do need continued treatment. That being said, I also emphatically told Sheila that if this procedure was a pro