Scattered Thoughts . . .

A lthough I happened to finish my antibiotic for my recent sinus infection last night, today was a day of very poor health! My sinus infection is clearing up but I fell asleep on the couch before I could make lunch today.  I slept straight through to dinnertime.  So, I slept four to five hours this afternoon which is double the amount of time I normally nap each day.  I was exhausted and couldn't keep my eyes open.  Plus, falling asleep before lunch is exceptionally odd.  Sleeping straight through to dinnertime is even odder.  To make matters worse, missing a meal almost always results in anaphylaxis for me.  Systemic mastocytosis is brutal and unforgiving of even one mistake. Considering the amount of cold medications I was taking since before Christmas but had stopped taking days ago, I should be well rested already.  I slept a lot while I was recovering from the sinus infection.  Theoretically, I should be feeling pretty good today so feel...

L ast night I received a short note from my Oncologist about one of my most recent test results from tests done a month ago.  It is a relatively new test and so had to go to a separate lab.   I didn't see this note from my oncologist until we were heading to bed so this new information kept us up for another hour or so while we talked about it and what this possibly means for our immediate future as well as for the bigger, longer-term picture.   To be honest, I really wasn't expecting anything other than negative results from this new test so I have to admit I was a bit surprised to see that this time the results were positive.   This is a relatively new test that I had to pay in advance fully because no insurance companies are covering it just yet.  Although a relatively new test, it is a test result that can explain critically and chronically poor health like I am experiencing.  Naturally, this test also provides us with not only an additio...

B etween typical lousy springtime weather and continued daily struggles with Long-COVID problems, I've been trying to find things to accomplish around the house.   I'm still having more difficulty than usual with breathing problems.  I'm always feeling like I'm trying to clear thick, nasty phlegm from my lungs.  Actually, I am still clearing this thick, nasty phlegm from my lungs (dark nasty stuff) but it is difficult to move this thick stuff and it seems to continue to replenish itself even after I clear some out.  So, this makes breathing difficult which also causes extra fatigue.   Another lingering problem is inflamed joints.  This isn't nearly as bad as it was from January through March but it is still worth mentioning.  As exhausted as I am, the pain continues to keep me up at night and keep me more uncomfortable than usual almost all the time.  I'm always dealing with pain due to my extensive spinal injuries as well as the bone an...

W e were supposed to head out of town this past weekend for one of the largest train shows in the US but I have still been struggling with this latest and very long bout of COVID as well as a secondary infection and other secondary health issues.  My health had been slowly improving over the past week (finally) but I was still not feeling well enough for a trip out of town.  Actually, it was not even a close call.  I definitely was still not feeling well enough to do anything other that a few minutes of household chores. Truthfully, due to contracting COVID yet again during our first trip out of town since the before the pandemic, I have no desire to risk going out of town for the foreseeable future.  This virus is far too contagious and far too debilitating especially when combined with my primary illness.  Besides, every time I get this insidious virus, I'm sick for months and things get dangerously bad every time.  It seems like whenever I let my guard d...

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...

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....

The start to 2023 has been absolutely horrible and the next few months, at the very least, already promise to be just as stressful and rather miserable. Sheila's mom, known as Nan in many other blog entries here, has been struggling with Alzheimer's Disease for about four years now.  Over the past few months...  hmmm, I think it has been since summer...  she had dipped into end-stage Alzheimer's and is now in the hospital with a fractured spine and in the worst condition she has ever been in to date.   I'm not going to go into specifics here but this has been incredibly stressful for the rest of her family as one would expect.  She has been hospitalized for a couple of weeks at this point and I'd say she is just "surviving" now or "holding on"...  not "living" like we all try to do but just surviving one moment to the next. This is sort of like the body being on autopilot.  So, the past couple of months have been terribly rough for Shei...

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 t...

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-na...

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....

M y health seems to be recovering over the past day or two, finally, so that is good.  I feel like I should be much farther along in my recovery at this point but the past day or two have seen a nice improvement in my overall health.  Unfortunately, we have other problems that are cutting into our sleep though which won't help my health at all. We learned recently that our furnace is on borrowed time now...  at the perfect wrong time considering the current frigid weather.  We spent around $800 just to hold us over through this heating season but the furnace is not running well.  Replacing the furnace in winter is rough because we would be without heat for at least a day.  If other parts need to be ordered, we could be without heat for more than a day.  That simply won't work in the dead of winter so we're trying to just make it through this heating season before we tackle installing a new furnace.   The temperatures have plunged well into su...

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 ...

I had an appointment with my oncologist this afternoon.  The appointment itself was rather uneventful which was nice but a few things were discussed that concern my doctor.   I've always struggled with overwhelming fatigue with this rare illness but the past few weeks have been significantly worse and consistently worse.  I've also had some of my usual symptoms come and go during this period.  The fatigue has been the most noteworthy though and seemed to concern my oncologist more than anything else today. I would get up in the morning and head to the bathroom, as usual.  By the time I would leave the bathroom after washing and brushing my teeth, I needed to lay down again.  I would nap but when I would awaken a few hours later, I still felt like I hadn't slept at all.  The few hours a day that I would manage to be on my feet were spent bouncing from one thing to another, unable to stay focused on any one thing.  So, not only have I been stru...

This past week has been a bit brutal as far as my health is concerned.  The major complaint is chest congestion with the associated cough and having no voice.  My O2 levels have been down as low as 88% (last night).  I haven't had a fever but I've been feeling rather lousy with a sore throat and just not feeling "right" which, I guess, would be considered malaise.   I've taken three COVID tests in the last five days and every test result has been negative.  Of course, that is good news but, honestly, I'm having great difficulty believing the accuracy of these tests.  Other than having mono a few times in the summer, I have never been sick with any bug in the summer.  I'm not feeling mono-ish so I'm not thinking it is that.  Anyway, three COVID tests in the past five days have been negative.   Another positive is that this bug hasn't seemed to negatively impact my primary illness.  That is definitely a good thing!  My prima...

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 missed a dose of medications at dinnertime last night and, before bedtime, my health was crashing.  By 10pm, I was sick and in the bathroom.  I finally made it to bed by 4am after taking some extra medications and emergency medications.  I still couldn't sleep until around 5:30am because of nausea and I was still feeling as though I might need to get the bathroom quickly. This hot, humid weather is not helping my health at all.  My health does not do well in consistent temperatures above about 79° or so and we have been well above that lately.  I'm finding that humidity about 60% or more along with temperatures in the 70s also negatively impacts my health and breathing.  The humidity hasn't been as bad as it typically is in coastal areas but it has been high enough to trigger some significant health issues for me.  I'm actually a bit surprised by how only mild humidity negatively affects my health. Anyway, my health is struggling in this climate......

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've spent the past 18 days struggling with chronic and serious health issues related to a failed attempt at a colonoscopy. It has been a rough few weeks and a few weeks of nothingness... just trying to get through one moment to the next.  After constant and consistent extra medications, I am finally beginning to feel more like myself again. I'm not feeling "good"... I am not anywhere near what is considered "normal" for me... but I am feeling decent enough to safely attempt a few small chores around the house. I even started back on a very light version of my daily physical therapy for my spinal injuries (which is much needed!).   Needless to say, after all this time of nothingness, there is a lot to be done around here because everything, other than my health, has been ignored and neglected.  I did some preventive maintenance on my furnace... then I had to get the thermostat in working order again. The heat kicked on after this little bit of wor...

My health often resembles a see-saw... my health swings upward and I experience relatively good days... then swings down and I experience rather miserable days... back up... back down... sometimes it balances in the middle for a relatively short period if I managed my health effectively and luck was on my side but, more often than not, it seems to move up and down like a pendulum moves side to side. Yesterday afternoon the see-saw started moving downward... after a little bit of dinner (I didn't eat much because I was feeling poorly), I had hoped that my health had leveled out in this short period before bedtime though... no such luck... Apparently, this see-saw continued on its downward swing through the night.  I was quite sick and in the bathroom for far too much of the night when I preferred to be and needed to be sleeping. Actually, I was overwhelmingly exhausted and struggling to keep my eyes open even while I was sick as a dog.  I really hate these nights. It tak...

I've mentioned many times before that pets often help me out with my health.  They seem to have this ability to sense energy levels... or lack of energy levels.  Whenever my health is about to crash, these neighborhood pets tend to come toward me and start nudging me with whimpers and meows... looking at me... nudging me... following me wherever I go.  When I see this type of behavior, I am quick to grab my emergency medication and start sorting out a new game plan with my medications because history has proven that these cats and dogs are exceptionally accurate at knowing about my health and warning me as though they are an early warning system. As I mentioned above, I believe it is our energy levels that they are sensitive to and to which they respond. These pets come and go over time (as our neighbors come and go) but I always seem to have at least one resident pet at any time who looks out for me. Lately it has been this blue-eyed, long-haired cat who keeps clos...