Scattered Thoughts . . .

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...

Today was one of those rather lousy days. It wasn't "miserable" nor "grueling" but it was quite lousy. Systemic Mastocytosis causes all sort of transient symptoms, problems, difficulties and obstacles. One day can be vastly different from another. One moment can be vastly different from the next! Today, however, was fairly consistent... quite lousy. This all started late last night with some flushing. Sheila had noticed a splotchy, deep red rash on my face and neck. I felt "okay" at the time so I just let this first sign of impending trouble just slip by with no countermeasures. By the time I laid down in bed last night, I was experiencing palpitations and mild tachycardia (120-130 bpm). This is a sign that my blood pressure was dropping too low... my body would respond naturally by jumping into overdrive to counter the loss in blood pressure (which is a very good thing)... then my blood pressure would drop again... body would respond.... etc. Co

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 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

We just exited a long, frigid winter with more snow than usual. I didn't expect all the huge piles of snow and ice to melt until a little later than usual since we had so much snow and because it had been so frigid cold. Not only is all the snow gone but we have already planted seeds for our wildflower gardens... a few weeks earlier than usual... and the temperatures are far above normal which clearly contributed to melting all this snow and ice so quickly this spring.  Considering the extreme temperatures we've been experiencing and how quickly all this winter's snow has melted, I'm expecting a brutally hot summer this year. We are already experiencing higher than average temperatures and that is taking a toll on my health, unfortunately, but not surprisingly. Since developing Systemic Mastocytosis, warmer than average environments have been problematic. I have difficulty breathing, I struggle with weakness, and my overwhelming fatigue becomes far more overwhelming

Sometimes a lousy night of health like I had last night continues on into the following day. Today is one such day. It is almost 24 hours since my latest transient health problems began last night and I am feeling just as lousy... extreme nausea, gurgling intestines, stomach pain, weakness, overwhelming fatigue (I slept all afternoon), and I am just feeling miserable.  I took some extra medications last night that target the gastrointestinal tract as well as a medication to help minimize the nausea. I added more extra medications today...  some extra mast cell stabilizers, more medications to target the gastrointestinal tract, and I'm about to add more anti-nausea medications.  Systemic Mastocytosis is unpredictable but after using up precious energy as I did during our trip to San Antonio, I know I should expect some lousy health. The problem is that I just cannot predict which problems I will experience...  which symptoms... how many symptoms... the severity of symptoms... 

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

After a lousy evening last night with some painful and debilitating health issues which left me drained, weak, and having difficulty just walking across a room, I am having a surprisingly "good" morning! The pain I experienced the last few days was miserable and last night that pain moved into the area of my kidneys only making the pain more widespread and bordering on intolerable. I am feeling a bit better this morning. Of course, this is with the help of some extra emergency medications which come with their own problems and side-effects but these medications have elevated my health into a far better place overall. I also managed to get some extra sleep last night which is always good. I had enough energy this morning to shower and shave. I was even thinking clearly enough to fix an email issue I've had for the past few days! I was having such cognitive difficulties that I could not figure out how to resolve this email issue. (Incidentally, my web hosting service co

My health has crashed again so I am down for a few days. I was feeling pretty good this morning, relatively speaking. I was having some cognitive difficulties which I have been struggling with for the past few days but I have had far worse problems related to this in the past so I wasn't all that concerned at the time. When I awoke from my usual afternoon nap (and always much needed nap), I was not feeling well at all. That is very unusual. I usually awake from my afternoon nap feeling pretty good and refreshed...  not today. Those pains in the areas of my lower kidneys was back again. My left leg was weak and that is a sign of either worsening spinal issues or impending anaphylaxis. To make a long story short, I kept getting weaker and weaker until walking was difficult and slow going. I quickly realized that my blood pressure was probably dropping to dangerous levels. Before long, I was feeling as though I would lose consciousness very soon. I opted for taking some emergenc

As I opened my eyes first thing this morning, I was having difficulty breathing.  I couldn't catch my breath.  I would suck in lungfuls of air but it may as well have been water. I felt as though I was trying to breath oxygenless air in the vacuum of deep space.  I sucked air deep into my lungs... nothing... the air just went in and out and I still needed air. It was like the air had no oxygen in it... or like I had the wind knocked out of me after being slammed to the ground while playing hockey or basketball.     I also was having difficulty finding the energy to wake myself up enough to get up out of bed. I felt as though I went to bed completely exhausted, fell asleep, and now someone was trying to awaken me just a few minutes after falling asleep. This wasn't just trying to wake up. No, this was weakness like I had no control over my own body. This is something with which I am far too familiar... I quickly realized that this is bad news... bad, bad, bad news.  As I