Scattered Thoughts . . .

My health has been deteriorating consistently since my last doctor visit a month ago. My new specialist (for a little more than a year now) decided to attempt to simplify my myriad of medications. Some medications were eliminated while others were increased. He sort of consolidated similar medications while eliminating one or two he felt might be unnecessary and added one medication that he felt might help.  These changes did slightly simplify my four daily doses of medications but, unfortunately, my health has been in serious decline since my last visit a month ago. I was getting more and more groggy, exhausted and weakened with each passing day. I was spending more and more time in the bathroom sick (no more needs to be said about that here). I was dizzy and I wasn't thinking clearly. Oddly, even though I was overwhelmingly groggy, I was feeling exceptionally restless. I was groggy, exhausted and restless all at the same time. I slept... a lot... and still couldn't get ne

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

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

I got to do two nice sailboat runs today... (no photos, though, since I forgot to give Sheila one of the cameras)... First, I went out alone to test out the boat and the rigging before I brought Lukey out with me. I wanted to ensure everything was safe. I came about a few times, zig-zagging across the lake and then brought her back in to our beach to pick up Lukey. Lukey and I went out on a longer run... zig-zagging to Boulder Beach State Park before turning downwind for the easy trip back home.  It was some nice sailing and Lukey had a good time. I'm left with legs of jello though. I guess this is a sign of how lousy my health has been... my muscles are weak and easily fatigued. Hopefully I can build up some strength with our summertime activities. Jello legs are no fun.

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 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

I've had some fairly stable health for the past week or two. It is always nice when this happens and especially so when it is Christmastime. Today, however, my health hit its limit... This evening, I awoke on the couch... laptop in my lap... still opened, still running, and still showing the model railroading page I was viewing... I was freezing... a bit groggier than usual after a nap...  a nap? "Wait a minute... I didn't lay down for a nap yet!" I looked at the clock... it was showing 4:30pm...  last thing I remembered, it was about 2pm and I was researching some model railroading stuff on the laptop... laptop balancing on my legs... I "awoke" in the same exact position with the computer still sitting on my lap.  What is unusual about this is that because of my spinal issues, I never stay in the same position for more than ten or fifteen minutes because the pain is too uncomfortable. I'm constantly changing positions and rolling over whenever I

I've been too busy and not resting enough lately. Just as significant is the fact that I'm eating things which are known to add to my Systemic Mastocytosis problems. Avoiding these "bad" foods can be tough sometimes. There is little choice when we eat out... there is little choice when we have dinner at someone else's home... and leftovers are always bad for me.  Cooking fresh food for every single meal is difficult... and extremely expensive for those of us living in this neck of the woods. Needless to say, we always resort to eating leftovers because of financial concerns. Another problem I routinely struggle with is staying well rested and avoiding overdoing it! This time of year is tough for this one. Not taxing my body at all is tough to do through the holidays. Finding time for my everyday naps is difficult... even when I do lay down to try to nap. Something always keeps me up or awakens me far too early. This may be my biggest struggle through the hol

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

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 weather is brutal for my health!  Our thermometer hit triple digits this afternoon and that is extremely dangerous for my health. Warm environments cause my health to deteriorate quickly and dangerously. Other than a medical appointment first thing this morning with Sheila, I've been accomplishing absolutely nothing lately. I'm not even sure I would imply that getting to a medical appointment is an "accomplishment"...  but, it is something I managed to do without my health crashing. I have resorted to residing in our air conditioned living room which is at a comfortable 75 degrees... a much more comfortable and mastocytosis-friendly environment especially when compared to the triple digit temperatures outdoors! Whenever I have had to wander from the living room and into the heat (for instance, going into another room in the house), my health would begin to crash quickly. There is no doubt that heat is my kryptonite. These short trips from the living room ca

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

It is a beautiful and cool morning which is ideal for my health. I quickly ventured outside to take advantage of the cooler weather to tackle mowing the lawn.  I managed to get most of the weed-whacking accomplished before feeling a bit weak... I came inside to get a drink and see what happens with this weakness.  Before long, I felt famished... so I made some food... had more to drink... I feel a bit better but I still don't feel "right". I'm still struggling with breathing problems... the usual vision issues... the usual spinal pain... but, this weakness thing is a serious sign of impending anaphylaxis... again.  Common sense is telling me I need to take some emergency medications... head to the couch... and call it a day. So... 10am... and my day is done.  Maybe I'll feel a bit better later...

As I wrote in my previous blog entry, my night last night was less than stellar as a result of some pretty lousy health. It turns out that today has been no better. Actually, today has been worse than all the time spent in the bathroom in the middle of the night last night. I've had difficulty breathing. I've been very weak. My bones hurt like only a Systemic Mastocytosis patient could understand. I'm overwhelmingly exhausted. I'm nauseated. And, after lunch, my throat was inflamed and a bit swollen. Then I passed out.  When I awoke a few hours later, all the symptoms were still present so I knew it was time for my emergency medications.  I've needed epinephrine today and I also needed to take some other emergency medications to try to stabilize my mast cells. Most of these medications cause drowsiness. Compounding this drowsiness issue is the fact that this huge cellular reaction inside my body causes indescribable fatigue also.  I really hate taking these