Scattered Thoughts . . .

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

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 of some t

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

I had a fairly good day yesterday... my health was relatively stable... I did some annual staining around the outside of the house... I assembled a hand pump station and stained it... I assembled the galvanized plumbing fittings... it was a productive day! This doesn't mean I didn't have moments of borderline lousy health yesterday... I did. A few times during the day, I needed to cool down... cold showers... cold water over my head until I cooled down... cold water on the insides of my wrists to cool down my blood... It was around 90 degrees all day so I had to work hard at keeping my body cool so my health would not fail. Around lunchtime yesterday, I wheeled our air conditioner to a window... set up the vent in the window... plugged it in... and we had air conditioning in our living room, kitchen and bedroom. I might need to resort to turning on the air conditioning today just to cut the edge on the humidity which is causing serious breathing issues for me today. Today

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

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

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.

It was a rough, uneventful and rather boring morning with my health problems (see my previous blog posts). Times like this always feel like periods of 'nothingness'.  I took some extra medications around lunchtime and then I ended up sleeping through the afternoon. When Sheila arrived home at 5pm, she noticed our resident cat sitting on our deck outside our front 15-lite glass door...  sitting in the rain...   watching through the glass at me lying on the couch...keeping a close eye on me through the glass. Whenever I get this type of attention from any cat, particularly this cat, it is a sign of exceptionally poor health... dangerously low levels of health.  Fortunately, I had medicated myself as best as I could...  well, I suppose I could have added a bit more medications... but, I'm awake now and feeling 'okay'. I'm not feeling 'good', but well enough to find something to eat for dinner.   I guess we had better do something about dinner befo

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

I wrote earlier this morning that I was thinking I would need to keep from wandering from the house. I just wasn't feeling "right" at the time. I was exhausted from lack of sleep. I was in pain from the effects of Systemic Mastocytosis and extensive spinal injuries. Common sense was telling me I needed to stick close to home. Well, when Sheila arrived home from work she reminded me that I needed to drop my car off at the mechanic's garage this evening. Unfortunately, my health had already begun to crash. Rather than getting a much needed nap this afternoon, I spent much of the afternoon in and out of the bathroom. Ooooo... fun time, let me tell you! Now I definitely needed to wander from the house to drop off the car. Regardless of my health, I really needed to drop my car off for this appointment. I haven't driven my car at all in about two months because it needs some work and even before that I had only driven less than 3000 miles in the past year. The car

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.

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

After a very rough week of lousy health and a lot of pain, I started feeling a bit better last night and this morning. As a result, I managed to get a little bit of work done on the house.  In the big scheme of things, what I accomplished was very little, actually...  just a tiny little bit of staining outdoors... but it was more than I had accomplished in at least a week. I stained a new landscaping step I installed a couple of weeks ago along our short stone pathway to the back door. While I had the stain out, mixed, and ready-to-go, I decided to stain the two steps leading up to our front deck as well as a small landing at our back door.  The positive thing is I managed to get a small task accomplished this morning. The negative thing is I feel as though my health has now taken a couple of steps backward again. I slept all afternoon which was necessary and really nice especially since I slept in a nice, cool, air-conditioned room. Unfortunately, I am still completely exhausted

It seems that most people think that no news is good news. Well, that is not the case for me. Actually, that never has been the case with me. I can tell you with absolute certainty that if I go quiet for a while, something is not quite "good". I am still struggling with my health (since Christmas) and I have had a few relatively minor incidents and episodes over the past couple of weeks. That being said, I think that if I look at how lousy my health has been over the past four months, my health has actually been relatively stable in the past couple of weeks. It is still worse than I feel it should be and I feel rates as quite lousy and debilitating. I've struggled with some mast cell-related issues, as always, as well as some spinal injury-related issues over the past couple of weeks. As one would expect, struggles with both of these issues still seem to grind my life to a halt. This grinding wears me out too! I never celebrate Easter so never really have anything t

As most of you already know, I am still trying to recover from an overly busy December as well as from our recent trip to Springfield, Massachusetts for the Amherst Railway Society's annual train show.  I am still so exhausted that I am having great difficulty thinking clearly.  Trying to focus on any one thing has proven to be impossible.  There are a lot of things which I would love to be doing but simply can't find the energy to even think straight. In the meantime, I spent a few days writing a review for Trip Advisor about our stay at La Quinta Inn & Suites during our train show weekend.  I was just notified that the manager of the hotel wrote a response to my review.   A partial view of one of four buildings housing the train show... Overall, I feel the manager's response to my review is acceptable and nice. That alone may indicate something positive about this hotel. He didn't give me any lame excuses as we have seen from other hotels. He didn't g

Last night wasn't one of the best nights of my life.  It certainly wasn't the worst, but it was lousy nevertheless. Once again, my Systemic Mastocytosis negatively impacted my health.  This illness affects my health negatively every day, but that is my "new normal" so I don't really think much about my limitations when my health stays in this "new normal" range. How any transient symptoms manifest can vary greatly so, each time I have any problem of failing, debilitating health, it can be a relatively new experience.  Last night was a little strange... Earlier in the night, I felt 'okay'.  I was feeling a little full or bloated but nothing that would arouse suspicion.  (In hindsight, it should have.)  I had some moderate joint pain, but with the drastic change in weather today, I attributed this pain to the weather.  I was wrong, however, and these couple of things should have aroused some suspicion! In the middle of the night I ended up