Scattered Thoughts . . .

After the holidays and including our annual trek to the largest train show in the US every January, my health is always in need of a few months of recovery. My health crashes to crazy lows and it requires months...  yes, months... of recovery. This is what can be expected whenever I push through a couple of months and, in the process, wear my body down far lower than it should ever be pushed.  We are at the end of March now and I'm still struggling with exceptionally poor health. My days consist of personal hygiene (which alone is oftentimes enough to sap me of whatever little energy I have and to knock me down for the day) and cooking meals for myself. That is about all my health can handle each day during these monotonous periods of lousy health.  On relatively "better" days (just one step above 'lousy'), I do get some physical therapy accomplished first thing in the morning. My spine still needs daily physical therapy. I seem to be able to add this into my

Oh boy was yesterday a lousy day!  Earlier in the morning, I was feeling quite well. I was looking forward to some exercise and my daily physical therapy. I never got that far though... First, around lunchtime, I began to feel something wasn't right. I couldn't put my finger on the problem but I knew some lousy health to some degree was approaching. I ate lunch and then it started... As I was trying to walk my dishes to the sink, my legs would not cooperate. At first, I wondered if they had just started to fall asleep... and hoped it wasn't a mastocytosis issue... or, was this a result of my spinal injuries? My legs not cooperating to such a debilitating level was a bad sign though... my legs really were not cooperating at all...  I could barely move them. I made my way back to the couch. My bones and joints had been hurting since around Christmastime so that was nothing new and they were still hurting but the hurt was pushed to the background as some new symptoms e

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... 

I had some relatively minor health issues over the weekend while we were with the grandkids but didn't think much of it. I threw some extra medications at my health and pushed on forward.  The past few days, however, have been rather lousy.  In hindsight, I know that the relatively minor health issues I experienced in the preceding days were clues that my health required immediate attention. I should have stopped all activity... I should have taken some emergency medications rather than just some extra medications... and I should have tried to rest and recover. Instead, my health progressively worsened as I tried to ignore the warnings and push on through our activities with the grandkids. I haven't been able to wander far from a bathroom. Sheila and I ran into town last night to pick up some groceries and even that very short trip was a problem. My current gastro-intestinal problems are fairly bad (it has been worse though)... I've been having some difficulty brea

We had the kids over yesterday for playing with dolls, playing trains, watching some movies and a nice pot roast dinner. It was a nice day, as always, but my health didn't cooperate whatsoever. Aside from all my usual medications, I needed to throw a lot of extra emergency medications at my health after having a serious bout of poor health leading to impending anaphylaxis. My breathing has been rather miserable over the past few days anyway... "miserable" compared to the usual "lousy"... but then I started feeling nauseated. At this point... the point when the second symptom appeared... I should have taken some epinephrine and some extra emergency medications. I wasn't thinking clearly so I didn't. (I haven't been thinking too clearly lately either which is another common symptom of this illness... brain fog clouding my cognitive reasoning.) Eventually, my health worsened significantly into difficulty with nausea, narrowing vision, lightheadedn

My spinal injuries have been screaming for the past month but that is nothing new. My breathing has been rather lousy for the past eight months so that isn't all that new either at this point. This morning, however, I am feeling both problems and both are rather significant. My lumbar spine is hurting all through my lower back to my hips and buttocks... with pain all through my groin and lower abdomen... and even up toward my kidneys. The pain is bad enough to keep me from sleeping. Needless to say, I'm exhausted even though it is still only mid-morning. I'm going to attempt to get back to some light physical therapy today. I attempted this a few days ago when my lingering cold was feeling like it was almost gone but that didn't go over too well... my cold got worse and that made all sorts of symptoms worsen. I'll attempt to get back into my daily physical therapy today if even a very light therapy involving only stretching. That should help my back at least a l

I had an appointment with my doctor again this morning. I had planned to go to this appointment alone (Sheila and I usually attend appointments together but this appointment seemed like it would be uneventful... ie, no life threatening decisions to be made or discussed... so I was going it alone today) but my car is frozen in the mud so Sheila had to leave work to drive me there. Other than giving up some blood, the appointment was rather painless. Sheila and I saw the same doctor last week for Sheila's lingering cold. While we were there for Sheila, my doctor said she wanted to see me for a full exam and to adjust my medications. That appointment was this morning. This appointment was not a moment too soon since my health has been rather miserable lately. I've been having significantly worsened breathing issues since June of 2015... which is a long time and something which should have sent me to the doctor long ago. That was a priority today because it seems to be worseni

I feel as though my weeks-long cold is finally waning which is good news, however, I think this cold has had a tremendously negative impact upon my primary illness. The bad news is that I am well beyond exhausted. It is clear that I am not thinking clearly... I screwed up tonight's dinner... I spent time and energy preparing a pork roast, hoping for a few days of leftovers... seasoned it, seared it, put it in the oven... and three hours later realized that I never turned on the oven. After sitting unrefrigerated for close to four hours, the roast went into the garbage.  Simply walking to and from the bathroom is an exhausting task.  Showering will require more energy than I have to expend so it is not something I have even attempted in the past day or two. My eyes don't want to stay open.  Just the simple, thoughless, involuntary act of breathing while sitting on the couch is using up energy as though I were playing a grueling game of basketball.  I'm exhauste

For most people, a cold is an annoyance... an inconvenience... a nagging little problem of needing tissues nearby and having some over-the-counter cold medications. For those struggling with other illnesses, like my own illness, a cold can be brutal. My illness, Systemic Mastocytosis, causes overactive mast cells, all day, every day... an abundance of mast cells... and, since mast cells are at the center of immunology, this means I have an over-active immune system.  Because of these overactive mast cells attacking all sorts of things within my body which it should not, I often have symptoms of a typical cold even on a good day. I have too much histamine in my body. I have too much of every mediator produced by mast cells which causes all sorts of problems including some life threatening problems.  Now... add a virus or a cold to this already unhealthy body...  During a typical cold, my mast cells get even more over-active... moving into hyper-activity. This causes some absolut

Near the end of our stay at the lake house this summer, my health took a major nosedive after a physically demanding incident on the water ( can be read here ). Pushing my body since developing Systemic Mastocytosis  always results in failed and deteriorating health and this incident was no exception   (even for a short spurt of only two minutes, like this time) .  For about four months, my health has been deteriorating more and more each day. Breathing capacity was limited and breathing has been difficult, at best, due to inflammation in my lungs. Along with this inflammation was some fluid buildup. I felt as though I was drowning and suffocating.  My energy level plummeted. I don't have much energy to begin with so any loss of energy is significant. For example, even on the best of days since developing Systemic Mastocytosis, I am only about 40-50% of my physical self as I once was when I was healthy. Plus, for a more accurate assessment, we should add the intense chronic pai

It is only 9:30 in the morning yet I am already ready for bed. I'm exhausted... fatigued... feel like I have been awake for weeks... I'm weak... I'm having difficulty breathing... I simply don't have the energy for anything. There are a million things I actually want to do... work on the house... work on a dollhouse I designed and have started building... work on some model railroading projects... do some landscaping... get some more work accomplished on the bbq grill kitchen area outside in the backyard... do some biking... get out to do some landscape photography... take a short hike to a nearby mountain summit... lately, I've even been thinking of sitting down at the piano again after a very long break from music in general.  (A side note here:  I did, however, have an unusually good day yesterday... I ran some electrical through some existing renovations... I did a little painting... I did a little bit of spackling... I even did a load of laundry which is

We chose the correct day of this holiday weekend to head up to Shelburne Farms... that is for sure! Yesterday was a sunny and warm day but there was a nice breeze to keep the temperatures tolerable. Today, however, was brutal. At 9am this morning, we got into the car to head to the supermarket to pick up some bagels and donuts... it was already so hot outside that the inside of the car was dangerously hot which triggered an anaphylaxic response from my body before we even pulled out of the driveway. The weather only worsened as the day progressed. By 2:30pm (the last time I checked the thermometer), it was 96 degrees. Worse yet, our trip into town this morning was wasted since there were no bagels left... as usual.   I haven't been able to breath today... I have absolutely zero energy... it is simply a brutal day as I struggle with the typical and debilitating symptoms of Systemic Mastocytosis. Fortunately, we had chosen yesterday for our visit to Shelburne Farms. Today defin

The kids were here for dinner again tonight and that is always a welcomed change of pace so that part of our night was really nice.  The problem was that it was a bit hot this afternoon (the low 90s) and I think this negatively impacted my health. Something caused my health to nosedive and I know warm environments are terrible for my health so... I'm blaming the heat. Ironically, earlier this morning was a better morning than I have experienced in quite a few weeks. As a result, I managed to do some much needed laundry... cut my hair... and shower. This may not sound like much, but it was more than I had accomplished in one day in quite some time and enough to completely exhaust me of energy... even taking my breath away. I ate some lunch and then slept for almost three hours. When I awoke, the kids were arriving at the house for dinner. At this point, the temperature in the house was in the low 80s and my health was beginning to slide down the slippery slope it finds far too o

This morning, I wrote about how I missed a dose of medications yesterday... then missed some more medications last night... then missed a medication this morning... and how this sort of thing snowballs into something out of control...  This snowball has indeed enlarged and gotten out of control! This is a dangerous sequence of events for anyone struggling with Systemic Mastocytosis. Today was a "down" day for me... trying to recover from the missed medications... rest up... avoiding the heat and humidity (which trigger anaphylaxis and miserable health)... so, after lunch I laid down on the couch in the air conditioned living room to try to catch up on much needed sleep and to, hopefully, recover. The good news is that I had no problems whatsoever in falling asleep... The bad news is I was awakened very abruptly. My chest was pounding in palpitations... I was groggy... although I awakened suddenly, I was still groggy...  and feeling weak... I still wasn't thinking cl

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 am on a roll... or tumble... and the hill I am tumbling down seems to be much bigger than I had originally thought. My health began its roll down this hill a few weeks ago and it just continues to tumble downhill. I slept for about four hours this afternoon and felt pretty good when I awoke. I honestly thought it would be a night of good health and feeling well. Within a half hour things started to deteriorate and things deteriorated rather quickly. First was the nausea... In hindsight, I should have taken this as a sign of impending doom. To make a long story short, I didn't realize that my health had crashed into brief anaphylaxis until my body responded naturally. I had missed all the signs. My body responding naturally to anaphylaxis is a good thing though! It isn't something I like to or should test but it is a good thing! Sometimes, either I am not thinking clearly enough to catch these signs... or, I am feeling so well that impending doom with my health seems so

When I was writing about my health last night (my previous blog post), I knew my health was not headed in the direction I had hoped. I suspected it might be a long night... and, although it was not as miserable as it often gets, it was indeed a long night spent in the bathroom feeling rather miserable. The nausea continued to worsen as I was typing last night. My breathing didn't get worse, but it did not improve much with epinephrine sprayed into my lungs. That provided only temporary relief allowing me to get some much needed oxygen into my body by opening up my constricted lungs if only briefly each time.   Eventually my intestines started gurgling... a sure sign that I must find a bathroom quickly and that I must take some extra emergency medications as soon as possible (it is difficult to do when you are sick as a dog). The gurgling intestines definitely created a need to spend some time in the bathroom through the night last night... oh, fun times! My episode and post-e

A nice night out with friends for Christmas... Even when my health is relatively well, I am always a bit concerned about the timing of my poor health. I don't actually worry about it because, after all, I can't control my health, but it does concern me enough to wonder about rescheduling and contingency plans. Realistically speaking, just because my health is relatively well at any given moment does not mean my health will continue to be relatively well. If anything, Mastocytosis has taught me to accept and expect unpredictability. Although, to be honest, long before Mastocytosis reared its ugly head, I had already come to terms with unpredictability due to my spinal injuries. "Unpredictability... accept it, expect it, embrace it!" From November until the end of January, we have been quite busy physically and our schedules quite hectic. There were a number of events we were looking forward to and we, as always, were hoping my health would cooperate with this he