Scattered Thoughts . . .

The past week has been quite a week. My week was so lousy that I would have sworn that just this past week was really three weeks long! First, the grandkids started puking last Sunday... unfortunately, I had been with them on Saturday so I was probably exposed to the same bug.  By Monday, the stomach virus had hit me as well. Fortunately for the grandkids, they shook off the bug within 24 hours. Unfortunately for me, bugs like this tend to linger and negatively impact my Systemic Mastocytosis with problems that linger even longer. This bug was no exception. Some of the days over the past week were absolutely miserable... from morning to bedtime... but some of the days varied between waves of nausea and feeling like the bug was finally moving behind me. Then another wave would hit and I knew that I was only experiencing some wishful thinking.  Some days, my fatigue was actually brutal... I'd get up and immediately take my morning dose of medications... then, after my medicat

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

We had a busy weekend again with the grandchildren. It is always nice to have them around but this weekend my health did not cooperate. I screwed up a dose of medications on Saturday... and, other than a 15 minute snooze in the car on the way back from Burlington, I missed my usual 2 hour daily nap... and now my health is paying for these problems. I could barely keep my eyes open on Sunday (yesterday). I felt as though I had been heavily drugged and was fighting losing consciousness. I finally had a chance to lay on the couch in the afternoon to try to get some much needed rest. I slept for about two hours but I had a very difficult time waking myself up enough to even get up off the couch. I would try to awaken but my eyes wouldn't stay open and I would fall asleep again... and then again... and again.  As I was lying there, fighting falling asleep yet again, I was wondering if I might have experienced anaphylaxis in my sleep again.  The post anaphylaxis symptoms are very o

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

I've had Systemic Mastocytosis episodes ranging in severity from 1 to 10 over the past decade and a half. Some episodes are worse than others but they are all quite debilitating.  Some episodes last for weeks, some for days, and, on the rare occasion, only hours. The symptoms of these episodes are varied but always include physically, mentally and emotionally debilitating symptoms, a lot of pain, and even life threatening symptoms. Last night, however, I experienced a type of episode which was new for me. Many other patients experience this type of episode often but it was a first for me. I don't think this means much since each patient presents this illness differently. Last night, my breathing became difficult rather suddenly and then I quickly noticed that swallowing was difficult. I definitely knew this was not a good thing! Within about a minute, I realized that my throat was swelling and closing.  I quickly grabbed my bag of medications as well as my emergency medic

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

I've been feeling a bit better the past few days as related to the lingering cold that Sheila and I have been struggling with since January. Now I am struggling with lingering fatigue... an oppressingly overwhelming fatigue which defies any accurate description. I slept for 11 hours last night... 10 hours a night has been the norm since this cold started in January. I've also been sleeping for 3-4 hours every afternoon... and, sometimes, I've been napping for upwards of 5 hours. That doesn't leave much time awake each day! I manage to get beyond breakfast each day... make my lunch... but then have no energy for cooking dinner. I rarely even have the energy to shower although I do shower on some days but must skip breakfast in order to save some energy so I can shower.   Energy management... everything is a trade-off. My body is rundown and I can't seem to accomplish much. Needless to say, I am quite bored and feel the need to accomplish something.  A fe

Today is a perfect example of how just one small errand can put a quick end to my day. I awoke feeling halfway decent... I decided to tackle some small tasks around the house this morning since I was feeling well but first I needed to run a quick errand. I needed to run to the local grocery store this morning to pick up something for lunch and a few other odds and ends. On the short drive down to the store, I actually felt much better than I have in recent memory. As a result, my thoughts were filled with all the wonderful things I could accomplish today... even thoughts of activities I used to be able to do when I was healthy.  I knew this errand wouldn't take long and I was looking forward to having a very productive day for a change.  I had so few things to purchase that I was in and out of the store within a few minutes but, unfortunately, this simple errand required more energy than I had in me to expend today despite how great I felt only a few short minutes earlier.

...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

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

I honestly don't know how often I write about it, but it is time to write about it again even if I have written about it often.  Fatigue is something I struggle with every day, all day. The past week or so has been pretty lousy when it comes to the energy vs fatigue struggle so I thought it would be a good time to write about it. "Overwhelming fatigue" is a much more accurate term than simply saying "fatigue". Telling my doctors that I am "fatigued" doesn't even come close to describing this debilitating symptom. Just saying "fatigue" sounds silly... childish... minuscule... not worth mentioning... it seems like something a nap will cure. Even calling it "overwhelming fatigue" doesn't seem to cut it either but it is the best term I know. I've had mononucleosis three times in my life (thus far) and I have always said I would never wish that fatigue on anyone... not even on my worst enemy. This overwhelming fatigue th

I am back into recovery mode.  It is funny...  well... maybe "funny" isn't really the most accurate adjective... but, even after having Systemic Mastocytosis for more than 10 years, I still forget how much down time my body and health requires. It isn't until I have tasks and projects stacked up like aircraft in a holding pattern waiting to land at a crippled airfield that I clearly hear that voice... "Hey... hey you, there... you are sick! What makes you think you could make plans to get things accomplished like a healthy person? Do you need another reminder of just how sick you are?"  Then I suddenly get whacked with crappy health. Last night we trekked up to Lowes to pick up a few more patio blocks (I learned long ago that I need to break all projects down into small tasks... we need more than a "few" patio blocks but I can only handle a few at a time) for our kitchen grilling area project in the backyard. We had no problems with that other

I had some good health through the weekend which was very refreshing after struggling with a nasty cold and mast cell related side effects for months . During this brief period of good health, I was thinking clearly and had a good amount of energy, relatively speaking. As a result, I managed to get a lot of little things accomplished around the house. One project I started to tackle was building a little covered kitchen grilling area in the yard. I had all these ideas vividly in my head. Yesterday... I awoke and all those ideas and plans were a muddled mess and I couldn't figure out how or where to connect any two pieces of lumber. Hell... I couldn't even figure out what size the lumber should be!  Compared to some people's abilities with projects such as this one, not knowing what to do for a project such as this would not be a sign of anything other than another normal day. For me, with an engineering background and someone who is constantly designing and building thi

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

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

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 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

Struggling with Systemic Mastocytosis, in any of its forms, makes the ability to be productive both difficult and frustrating. The desire to be productive is there... The desire to accomplish just one small thing on our continually growing to-do list is there... And, the frustration of how this insidious illness hinders all we try to do is always there. Those of us with this illness are familiar with the occasional "good" day. We call these occasional days a "good" day but, for us, "good" is a relative term. For us, good simply means this moment is better than the previous. In reality and more accurately speaking, all days with this illness are a struggle, at best. Some moments are just better than others and it is these better moments which we refer to as "good". Sometimes, however, a week such as this past week just slowly spirals downward. It can start with one noticeable symptom... in my case this week, I noticed a problem with my vision.