Scattered Thoughts . . .

I 'm still dealing with evening fevers and generally feeling like crap d ue to this latest bout with COVID.  After two months of miserable, painful health, this is getting old. I feel halfway decent in the morning but then, after my afternoon nap, I feel quite lousy again.  The fever comes back and I simply feel miserable.  You'd think that after napping for a couple of hours, I would feel pretty good again but that has never been the case any of the seven or eight times I've had COVID.  I get up from my nap hoping to feel fairly well but I feel feverish and my headache is back.  And, worse yet, nothing seems to cut the pain of this COVID headache. My breathing is still worse than usual too.  I really need to find the energy to do the PT for breathing and clearing out the lungs that I have done every time I've had this virus.   Anyway, that is the latest news on my health. EDIT:  The following morning - By the time we went to bed last night,...

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 ...

Today was Valentine's Day so I stopped to pick up a dozen roses, some candy and a card for Sheila as I was driving back home from another medical appointment.  Sheila seemed to be pleasantly surprised by the gifts when I arrived home.   My health has been so lousy with COVID since before Christmas that we sort of skipped Christmas, our anniversary, New Year's, and even a long weekend out of town with friends.  It has been a period of nothingness, overwhelming fatigue, pain and lousy health.   I had a medical appointment this morning while Sheila worked from home which provided me with an ideal opportunity to get a few things to show my love and appreciation for Sheila.  As I said, I believe she was pleasantly surprised and thankful! My health...  uggg...  COVID is a miserable, debilitating and highly contagious virus and, at this point, I seriously wonder whether I will ever get in front of it.  It has been over a year now of being well ...

When I got up out of bed this morning, I only got as far as the kitchen (directly from the bedroom while on the way toward the bathroom) before I told Sheila I was already ready for a nap!  Since then, all I need to do is walk from one room to another before needing to sit down to take a break to restore some energy.  Then I walk another 10-20 feet and I need to sit down to take a rest again.  To say that I am "exhausted" is a gross understatement.  I am what I would consider to be dangerously low on energy. Since we arrived back home from Manhattan a few days before Christmas, I have spent most of my time either in bed or on the couch.  This has been my view from the couch...  and, for a change of pace, I sometimes sit in that armchair... Most of the time, I've had a camera or two at my side hence the snapshots here in this blog today.  Below is a photo of my favorite camera, my Sony a7 which is about nine years old at this point.  I shot this us...

I had no problems falling asleep last night.  I was dozing off by 8pm.  I awoke at 4:30am this morning when I tried to roll over onto my right side.  I was quickly reminded that the bone marrow biopsy was on my right side though so that woke me up suddenly.   I read in bed for a bit and then got up out of bed with Sheila when she got up for work at just before 6am.  However, I was unable to keep my eyes open by 8am and slept on the couch until just before noon (on my left side, of course).   I didn't even eat anything for breakfast because I was too exhausted to make anything.  I was originally planning to make some bacon and French toast because I was starving.  Due to a serious lack of energy, I changed my breakfast plan to just having a bagel with cream cheese.  I still didn't have the energy to make even that.  Instead, I grabbed a couple pillows from the bedroom and laid down on the couch.  I was asleep the moment my ...

I 'm lagging behind in keeping this blog updated which, for some reason, seems to be the norm for the past year or so.  Perhaps it is due to overwhelming fatigue.  Whatever the reason, here is an update to my recent oncology care blog entries I wrote in the past month or so. My overall health over the past year or two has been gradually worsening.  This rather lousy overall health has become my new normal so I'm kind of used to it now.  Plus, it changed so slowly that it was difficult to see.  Since I'm used to it now, I have been having difficulty in recognizing it as an everyday thing and a new normal.   The biggest concern and perhaps the most debilitating concern has been overwhelming fatigue.  On far too many days, I'm ready to head back to bed long before lunchtime and sometimes right after leaving the bathroom getting ready to start my day.  On these days, I have difficulty keeping my eyes open and I have no energy.  My brain want...

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...

Sheila was tested for COVID-19 again this morning so I suppose that means we are both in quarantine until we get word on her test results.   She is feeling kind of lousy...  mostly symptoms in her sinuses and nose...  although she has watery, itchy eyes and fatigue as well.  It is possible she has a cold or allergies but we thought getting tested was the wisest idea because she was exposed to the public at the hospital a few days ago for one of her regular cancer checkups.  Other than that, we really have not been exposed to anyone in the past few days.  We've only been at home as we should be during a worldwide pandemic.   Anyway, now we wait for test results.  I suppose I will need a test as well if she tests positive.  My bet is that she is suffering from some far worsened allergies.  It is better to be safe and responsible so we'll sit tight while we wait for her test results... 

It has been warm the past two days and today is looking to be a beautiful, sunny, warm spring day too.  I had planned to utilize the good weather to start working on things outside where sawdust is not an issue.  This week is looking good for that and I have a bunch of small projects that need to be accomplished.  Actually, I've been waiting months to be able to pull out woodworking tools to accomplish a few things. Unfortunately, once again, my health is being a bit uncooperative.   My ankle is still healing.  Sheila and I wandered outside yesterday to take down wreaths and Christmas lights.  I stepped up on the first step of a stepladder and quickly realized my ankle was still in no condition for climbing a short stepladder.  I instantly fell off and onto unlevel snow on the ground.  This hurt both of my ankles again setting me back a couple of days.  I have no need for my cane now but getting around is still a bit painful and slow-goi...

I haven't written here in quite a while because I simply have not had the energy to accomplish anything including even writing a simple blog entry.  I assume my main problem is that I am still fighting off this virus that has been coming and going since May.  January to May was miserable with a solid fever for four months, breathing difficulties, sore throat, congestion, vision problems, cognitive difficulties, and absurd levels of fatigue.  These symptoms have been coming and going in waves since the fever broke in May. I'd say my biggest complaint is the viral fatigue.  The fatigue from my mast cell illness is debilitating and what I would call "overwhelming" at times but this fatigue due to this virus is far worse.  Just standing for any amount of time is too much to do.  I don't even have the energy to simply stand long enough to stop and say just a short sentence to Sheila.  I need to sit down.  By the time I get cleaned up and brush my teeth...

Just about all of my "cold and flu" symptoms seem to be behind me but my level of fatigue is still quite overwhelming.  I spent just about all of this past weekend sleeping.  I awoke only to use the bathroom, eat and take medications.   I still have some minor symptoms of a cold...  some gunk in my nose and running down the back of my throat at times.  The fever has been gone for days though so that is good.  Headaches still come and go but are so minimal at this point that they are hardly worth mentioning.  I still get bouts of difficulty breathing but that could be due to my primary illness since I do experience this regularly anyway.  What I was experiencing a month or two ago, however, was well beyond my usual breathing problems (since being on medications to control these problems).  Overall, most of these untested, undiagnosed "cold and flu" symptoms seemed to have dissipated.  The fatigue is worse than usual though. ...

Last Saturday, I was cutting the lawn and I stopped to cut back some brush.  As I stepped into the brush, I must have stepped into a nest of yellow jackets.  I felt like I was stabbed on the front of my shin by a broken twig and then I had a swarm of bees swarming around me.  When I stepped back to see if I had broken the skin by the sharp twig, I noticed that I had a bee stinging my leg.  It wasn't a twig! I squashed the bee with my hand and then moved from the area quickly.  I realized that it would be wise to head inside to grab my epi-pen since this sort of thing typically affects Mastocytosis patients more severely than healthy patients.  I took some extra medications and then went back outside to finish the lawn.   The area of my leg where I was stung felt a bit painful and itchy for the rest of the weekend but it wasn't worth mentioning.  Now, eight days later, my leg is still itchy, red and swollen so it is worth mentioning at...

I'm still struggling to shake free from the flu.  I've been sick since just before we arrived back home from our cross country rail journey.   I still have a cough but not nearly as bad as it was in that first week. My biggest complaint, however, is dealing with the overwhelming fatigue and overall aches and pains.  Then, add in the usual fatigue, bone pain and joint pain from my primary illness and the past few weeks have been brutal.  An hour after getting out of bed in the morning, I need to lay down again.  At that point each day, I hardly have the energy to stand or hold my head up.   We'll see how long this lasts...  I'm tired of it though...

At this point, Sheila is most of the way through the final homestretch in her radiation treatment and she's quite excited... and fatigued... and burned... but mostly  experiencing subdued excitement punctuated by occasional outbursts of excitement! So, to quickly update, at this point she's experiencing some relatively minor pain in the tissue of her right breast. The burned skin and itching has been  mostly   soothed through the use of various lotions (including prescription). On the positive side, the Radiation Oncologist was happy to see in today's visit that Sheila is not showing any signs of blistering and there are only tiny signs of some peeling. So that is good news. Sheila already went through some peeling when radiation treatment first started. She is now quite red at this point though. Well... some areas are a deep, bright red while other areas are showing what appears to be a deep tan.  Sheila needs to endure only two more radiation treatments... t...

The rooftop garden at the hospital... the cafe's fresh vegetables are grown here. We began our week feeling positive and energized which was awesome because this is the first time we began a week in this way in months. Sheila had about five days off in a row so she could catch up on sleep and continue to recover from her recent surgery, the beginning of radiation treatment and a terrible cold that developed at a very inopportune time. By the fifth day of rest, naps, and recovery, Sheila was acting more like herself and showing a bit more energy so our week started off with both of us feeling great! The one danger of feeling great during a long and trying period of treatment is that it is very easy to overdo it by doing more than the body can handle over the next few days. We were both careful about keeping each other in check because we are already well versed in managing energy due to my own continuous health issues. That being said, it is now Thursday and we are running ...

Unfortunately, Sheila's health has been deteriorating more and more each day since beginning her radiation treatment last week. It actually has been pretty frightening watching this happen! The primary reason for this deteriorating health is that she picked up a cold right when treatment began and her overall health has been spiraling downward ever since.  Sleeping has been difficult for her for a number of reasons mostly related to her cancer treatments and surgeries starting 11 years ago so she is now getting worn down to dangerous levels. This second fight with cancer has only exasperated the problem.  She is also dealing with a weakened immune system now because she has started radiation treatment. About a week ago, she added a nasty cold into the mix which includes her radiation-induced weakened immune system and the result is that her declining health has quickly become out of control. Her Radiation Oncologist noticed this declining health in our visit to her ...

After our followup appointment with the surgeon on Friday, suddenly, we found ourselves with a three day holiday weekend, no plans, and a cleared schedule for a week or two as we wait on further test results.  After a few weeks of hospital visits, surgery, and bad news and even worse news it was nice to have a little breather. As you could probably imagine, under these circumstances, we both wanted to get away for a bit.  Sheila wasn't in much of a mood for socializing so a weekend for us alone was what she really wanted and needed. I think there has been too much focus on conversations of cancer and treatment over the past three weeks and Sheila needed a break... and some rest... and some sleep...  generally speaking, she needed some quiet time and a change of scenery. Friday afternoon, we searched online for a hotel room for the long holiday weekend... as we expected, we had waited too long to book a hotel room on a holiday weekend. We even talked about the option...