Scattered Thoughts . . .

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 wants to do things that interest me b

I was notified today that my Oncologist wants to discuss something with me again on Monday.  I'm not sure what she feels the need to discuss though since we just had a long discussion and exam at the hospital just yesterday.  I hope I'm not losing another specialist requiring me to search for a new one yet again. Sheila and I discussed a few possibilities...  like prompting me to go see my Primary Care doctor about my joint issues...  or seeing an Orthopedic specialist...  or maybe some additional bloodwork...  or maybe another bone marrow biopsy...  or maybe adding another medication to my long list of medications...   Naturally, I'll be wondering about this all weekend long.   UPDATE:  Nov 1st, 2021 - As I mentioned, above, I was notified that my Oncologist wanted to do a Televideo chat today, Nov 1st.  So, I called the office this morning to find out how they wanted to connect in Zoom.  The receptionist thought it was strange that I didn't get an email with a link

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

I slept for a total of three and a half hours the other night...  I was having a dream about doing electrical work on some house but I wasn't having much success...  wires were exposed and lighting fixtures were hanging from ceilings...  nothing seemed to be working correctly...  then I started having great difficulty breathing in the dream.  I was calling out for help but it seemed as though nobody really cared that I couldn't breath and were even acting as though I wasn't even there...  maybe I was stuck in some other dimension...  at this point, I awoke and realized that I was indeed having great difficulty breathing.   I then grabbed my inhaler...  two puffs...  no improvement.  There is nothing new with that...  my inhaler rarely helps more than just slightly.  I took two more puffs about five minutes later and I finally was able to get a halfway decent breath of air after another few minutes of waiting for some improvement.   It was time at add more medications to my

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...

The few months after Christmas are always rough months for my health so I always expect health issues after the ramp-up to Christmas. This year is no different except that my energy levels seem to be at an all-time low too. Leading up to Christmas and through Christmas, I pound extra medications... adrenaline is flowing... and, I'm careful about my diet and managing energy. Once Christmas Day has passed, I'm exhausted... I mean completely spent... I mean overwhelmingly fatigued... I mean that just taking a shower oftentimes will use up whatever energy I had to use for that particular day. All this fatigue is accompanied by bone and joint pain. The joint pain is easy to describe... it feels like an ice pick being stabbed into the joint... my ankles hurt, my knees hurt, my hips hurt, my spine hurts, my shoulders hurt, my elbows hurt, my wrists hurt, my fingers hurt. If I attempt to hold anything... ie, a plate while attempting to wash a few dishes... the pain in my fingers, w

This past week has been rather lousy, overall, but this weekend has been thrust down to "brutal" levels.   We (mostly I) had hoped to get to the lake house yesterday to walk the frozen lake but my health was an obstacle nor was the weather cooperating... it was quite frigid yesterday! We abandoned that plan and ran some much needed errands instead. I don't get out of the house much...  the last time I was out and about was probably before Christmas sometime so I was itching to get out someplace where I could walk. Because of the aforementioned obstacles in heading to the lake house, we opted to head to the Burlington area to do some much needed shopping.  While in Burlington, we went into 'Homeport' specifically to find an oven thermometer and we instead found a couch that we both liked the moment we saw it. We did walk out with an oven thermometer but we also had info about the couch and contact info for the salesperson who was more than helpful with all of

I've been down for the count the past couple of days. My health has taken a serious nosedive which affects everything  in my life.  I'm experiencing difficulty breathing... my bones are aching (mostly long bones... ie, legs)... my joints are extremely painful (mostly my hips, knees, ankles and my spine)... I'm having cognitive difficulties... and the fatigue is completely overwhelming. Oh...  and I simply feel lousy at times, even miserable the rest of the time.  I've thrown a bunch of extra medications at this problem in the hope of stabilizing my body again as quickly as possible. We'll see how that pans out... I'm hoping to stabilize my health today so I can get back to 'Christmas stuff' tomorrow... 

Last week, for the most part, I experienced a lot of lousy health which interfered with getting anything accomplished on the house. We're pretty antsy to get this other bedroom finished but my health is making that seem like an insurmountable task. I don't even remember what the health problems were last week... some combination of typical Systemic Mastocytosis symptoms... but I spent most of the week sleeping. I felt halfway decent on Saturday but only managed to accomplish about an hour of work before the overwhelming fatigue took over and rendered me useless.  On Sunday, I felt great! It was Sheila's last day of a usual short weekend and it was Mother's Day too so I decided to use my new energy by spending time with Sheila rather than working on the house. I figured I could put this time aside for Sheila and then work on the house the following day.... Wrong again. My health crashed again. At some point this week, I did manage to squeeze in an hour or two of

...consequences in the form of exhaustion, bone pain, joint pain and spinal pain. Slowly, but surely, I seem to get things accomplished around the house since developing Systemic Mastocytosis but it is difficult for me and exhausting.. This illness wears me down all the time which requires a lot of extra rest and sleep. I do, however, manage to accomplish little things on my relatively good days. The frustrating thing is that after a period of lousy health, I end up with a long list of basic things which need to be accomplished such as laundry, straightening up the house, cutting the lawn...  all of which are enough to wear me out for a few days. So, when I find myself in this hole, it is extremely difficult to get out which can become exceedingly frustrating. I'm left feeling as though I am just desperately treading water and accomplishing nothing. That being said, this weekend was one of those relatively good times when I had health well enough to make some headway on some

Today has been a miserable day in the heat and humidity for my breathing and health in general. One of the things I hadn't mentioned earlier today, however, was that I am experiencing unbearable bone pain today. This bone pain is so intense that I am having difficulty sleeping even though I am completely exhausted. I couldn't nap today and that will definitely affect my health in a negative way. I'm hoping that I can sleep tonight.  My bone and joint pain has been getting progressively worse in the past couple of months. I don't know what is causing this worsening in these two symptoms... perhaps the warmer summer months are having a more serious affect on my Systemic Mastocytosis symptoms... or, perhaps this just happens over time as the illness affects more and more of the body. I don't know.   What I do know is the pain is unbearable right now and has been all day.

My health has been pretty lousy for the past few days but, today, it declined to the lowest of lows.  I awoke exhausted this morning and that is never a good sign of a "good" day. Of course, as I've mentioned many times before, a "good" day for me with my illnesses and spinal injuries is nothing even close to a healthy person's good day. For me, a "good" day means tolerable health... just minimal to average pain... but having enough energy to accomplish something. The past few days have been less than "good". So, I awoke exhausted... that should have been a clear sign of the day that was ahead of me. I didn't see this sign, however, and just tried to muddle through my fatigue. By the time lunchtime arrived, I realized that I wasn't just exhausted... my thoughts were muddled... and my mood was less than socially acceptable. This was the second sign that my health needed attention and, again, I didn't pay much att

As our atmospheric pressure drops due to a cold front with thunderstorms pushing down from Canada, the bone and joint pain caused by Systemic Mastocytosis has increased to an excruciating level last night. "Hyper-sensitivity" is the term of the day today.  Just some very light fingertip pressure is enough to cause sharp pains shooting through my body causing me to flinch and respond vocally.  The pain... all through my entire body... was at its worst last night at bedtime. That being said, I could have been more sensitive to the pain because I was exhausted. All I know is that when we went to bed last night, I felt as though I had something very seriously wrong with all my organs, all my bones... I felt as though I had just been hit by a train and was thrown aside like a rag doll... badly bruised... smashed like a tomato thrown against the pavement. All through the night, I had dreams of being in pain. My dreams took me to some places in my past where these injuries first

An everyday, 'normal' daily life with mast cell disease in any of its forms is kind of lousy even without any complications. When you add in something as mundane and common as the common cold... the cold seriously angers my mast cells... and it is felt all through my body and deep to the core of my bones. I suddenly developed a head cold on Thursday last week. My nose was running like a waterfall for two days. Cold medications didn't help much. Adding extra Mastocytosis medications didn't seem to make a dent in the cold either. Regardless, I needed to add the extra medications anyway to keep my body as stable as possible.   After two days of a constant, neverending waterfall flowing out of my nose, the pathway moved to down the back of my throat in a post-nasal drip...  well, post-nasal flow. Now it is Monday night and I don't have much of a voice and swallowing is difficult because my throat is covered in a layer of gunk. Fun times. Needless to say, with all

The past few days, my level of overwhelming fatigue was so...  well, overwhelming... that I couldn't help but wonder if I had enough energy left to recover. How low does one's energy level need to get that I actually wonder whether you can find the energy to recover? I don't know the precise answer to this question but I do know that it is exceptionally, frighteningly low. I sometimes forget that this overwhelming fatigue is also an active symptom of my illness and not simply a result of wearing myself down. This time, I did also wear myself down. Between the long rail trip and then some activity around the house, I definitely wore myself out. I definitely over-did it. History has proven that when I get worn out from this crazy amount of activity, it can take months to recover. This fatigue, however, can also be a symptom and a clue to impending poor health... a clue to a cascading mast cell degranulation event leading to anaphylaxis... this is what happened last night

I haven't written much about my illness lately and since today is a day of recovery for me, I thought I should write a few words today.  Seeing some of these symptoms in writing might give some important insight to some other patients as well as provide some insight to those in my life who may be wondering how and why I need a "down day" when I use this term. Yesterday morning, I felt fairly good considering my overall health. I classified it as a good day when I awoke and had a long list of things I had hoped to accomplish throughout the morning. I took care of a little bit of laundry and I did my daily physical therapy (mostly for my extensive spinal injuries but this also helps with my Systemic Mastocytosis). I made lunch. Then I was out of energy and needed to lay down to nap for a few hours. This is a typical, run-of-the-mill good day with a debilitating chronic illness. I get quickly and easily worn out just from a few mundane light activities.  When I awoke fro

My health has been pretty lousy this past week with various issues overlapping each day. Overall, I've been feeling worn out, weak, and just generally lousy. I've had problems intermittently with breathing, dizziness, stomach/gastro-intestinal, nausea, vision, bone pain, joint pain, spleen pain, cognitive function, bordering on anaphylaxis, and probably a few other things I have forgotten about right now. It has just been a rather lousy week. I laid down this afternoon for my daily two to four hour nap. Adam had his wisdom teeth pulled yesterday so we were all already camped out on the couch all day so I just napped on the couch while Sheila and Adam continued to watch television. Our neighbor's two cats spend much of their time every day at our place and today was no different. Before I fell asleep, I saw one of the cats pass back and forth outside. Since seeing the cats coming and going is something I see everyday, I didn't think much of it.  When I awoke from m

The past few days, Sunday through Tuesday, have been spent recovering from a busy day over the weekend.  Whenever I use a lot of energy, my health really suffers and it can take days or weeks to recover. This past Saturday was a very busy day for me and I used a lot of energy which was compounded by missing my much-needed daily nap. Even on a good day, I need to lay down for a few hours every afternoon. That never happened on Saturday though. So... what happens if I wear myself down? The best case scenario would be that I am simply fatigued at an overwhelming level for a few days. This fatigue makes just showering or cooking for myself impossible at times. Sometimes the fatigue gets so bad that walking to the other side of the house is a daunting task. Even reading can require more energy than I have to use! Worst case scenario would be that in addition to the overwhelming fatigue, my overall health suffers significantly resulting in breathing difficulties, dizziness, cognitive d

I awoke this morning feeling exhausted, almost overwhelmingly so. I immediately knew I would not be trying to tackle any big tasks today.  All I managed to accomplish was cutting and installing a small shim for a magnetic cabinet catch and sanding a towel bar for finishing. After these two very small tasks, I was completely spent for the day. It wasn't long afterward that my health crashed completely. Sometimes (weekly or a few times each month) my illness causes anaphylaxis. This anaphylaxis often comes on suddenly but sometimes can come on very slowly over the course of hours. Today was one of those days where the problems built up slowly over the course of the morning. I collapsed for a number of hours... I spent time in the bathroom sick... and I just simply struggled to stay conscious most of the day. Bone and joint pain worsened throughout the day. Today I am even experiencing sore muscles on top of all the bone and joint pain. I didn't even have the energy to showe