Scattered Thoughts . . .

O ur furnace was fixed this afternoon and it is now heating the house again so that is very good news. There is one more part he wants to replace...  just a small contact cap that goes in the ignition transformer... but he didn't have one on his truck.  He is off tomorrow but said he will stop by in the morning to install a new contact cap.  I don't really know the name of this part but it is an electrical contact point in the shape of a small cap so I'm calling it a contact cap here.   This older corroded contact cap is giving us inaccurate resistance readings.  These readings give a reading in ohms indicating the brightness of the flame.  The lower the resistance, the brighter the flame.  He adjusted the fuel pump to get the best resistance numbers possible but he's thinking the numbers will be even lower with a contact cap that is in better condition.  This is important because the ignition control box will shut down the furnace if these readings are too high.  Too h

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

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

Another birthday has come and gone leaving me another year older and wiser... well, maybe not wiser but considering my health issues, being left another year older comes as good news! This year's birthday found the weather sunny and hot... and I mean HOT! The weather was brutally hot and very oppressing which, unfortunately, is not agreeable with my health. My health deteriorates very quickly and oftentimes quite severely in warm environments nevermind in oppressing, suffocating heat. Fortunately, I was thinking ahead and spent the day fighting off the effects of the heat on my health by taking extra medications (a LOT of extra medications) and a few cool showers over the course of the day to cool my body down. My health held up and I enjoyed a nice, relatively quiet birthday at home. Liza and the grandchildren joined us for dinner and cake. I had spent the afternoon preparing a few new dishes for dinner. I have no idea why I chose my birthday to put together a couple o

Far too often, I completely miss the signs preceding Systemic Mastocytosis episodes.  Today was another one of these times of missed clues. I had a few dizzy spells late in the afternoon...  This should have been a huge indicator of failing health. I strayed from my strict diet today by eating leftovers for lunch followed by processed food and condiments which are highly restricted for dinner...   I know better and after straying from my strict diet for two consecutive meals I should have preempted any decline in health with extra medications. I awoke from my three hour afternoon nap in a very warm bedroom...   the temperature in the bedroom was in the upper 70s which alone is more than enough to cause anaphylaxia and a violent reaction.  I should have known this would lead to crashing health. Any one of these things should have caused me to immediately jump on taking extra medications...  powerful medications...  and to collect my emergency medications.  I think I have fallen

The hot, humid weather has finally broken!  Let's hope that the rain goes back to normal rainfall amounts and frequencies too! Now that the weather is cooler, I have tons of energy again.  That is great news!  So, I started working on the house again yesterday. I decided to continue the renovation that involves replacing most of our waste plumbing.  In particular, I started working on our new half bathroom yesterday and figuring out how to tie this into my waste plumbing plan. I had replaced all of our supply plumbing a few years ago.  That was a major upgrade and I can't tell you how comforting it is to know that all of our supply plumbing is brand, spanking new!  Now comes the much dirtier job of doing everything I can to upgrade and fix our waste plumbing (not to mention being a much stinkier job).  This waste plumbing project must be completed in order to install this new half bath. Test fitting fixtures... We have almost everything we need for the bathroom...  

We are back home from the lake house now.  Although it was a great week on Lake Groton and I prepared for this week for months by being vigilant with my daily physical therapy (a daily ritual since my second line-of-duty spinal injury in 1998), it has really taken a lot out of me. My spine is inflamed from dragging around kayaks and the sailboat.  Packing bags into the car didn't help either!  As bad as the spinal pain is, problems associated with my Systemic Mastocytosis are far worse and much more debilitating. Wearing myself down is one of the worst things I can do to my health today and has the same effect on all Systemic Mastocytosis patients.  The absolute worst thing we can do is to miss a dose of medications.  Wearing oneself down takes a close second though and requires the longest amount of time to recover. It just so happens that I did miss a dose of medications on our first night at the lake.  Our daily lifestyle changed so much at the lake that my medications wer

I'm still recovering from the excruciating kidney pain I had all last week and through the weekend but I am up and about and accomplishing small things around the house.  Although we still do not know for sure the cause of this intense pain, it is good that the pain is waning and I am able to accomplish a few little things again. What I am now struggling with, however, is unbearably hot weather so early in the year.  I had to retreat to inside the house by 11:00 am because the heat was so oppressing.  When I retreated to the protection of our home, our little weather station was showing the temperature to be 93 degrees.  By the time I had finished lunch, I was wishing we had the air conditioning units installed in our windows. My health does just fine when the climate is in the 70s.   When it is in the 80s, I need to take a lot of breaks to cool off.  One of the quickest and effective ways to cool down my body is running cold tap water over the blood vessels in my wrists.  This

I had an incredibly fun...  an amazingly beautiful... an uncharacteristically busy...  and a thoroughly entertaining weekend.  Sheila and I spent the entire weekend together and had a very busy schedule of fun activities.  As all patients struggling with Systemic Mastocytosis know all too well, getting to spend quality time together and sharing 'good health' is a blessing...  a rare blessing! We went out to a few restaurants in Waterbury on Friday and got to spend some time with some local friends in town.  Then on Saturday, after a nice breakfast at home, we headed up to Burlington on Lake Champlain to do some shopping for sailboat parts and supplies.  I was feeling relatively good and the weather was beautiful so we decided to make a day of it up in Burlington! We had planned to meet some friends, Frank and Christine, up in Burlington sometime after we finished our shopping.  Turns out we both pulled into the parking lot at the same time.  It was still early in the day...

After having a few rather lousy days, I am finally having a fairly productive morning for a change.  I have already been outside for an hour or more working in the yard. Last night was quite miserable...  some gastrointestinal problems, weak, dizzy and vision so blurry that I could not see a thing...  no reading...   no computers or media...  even watching television was difficult. I suppose I could have just sat around with headphones listening to music but, I must admit, although I am a musician, I quickly get bored with that.  It's sort of a "been there, done that" kind of thing.  Maybe it is just boredom...   after doing absolutely nothing for days (and the better part of this year so far), I need more to satisfy me...  I need "information"...  I need "learning"...  I need stimulation. Many musicians would say that music is  stimulation...  many musicians would say that playing music relaxes them... etc.  Over the course of four decades, I h

It doesn't happen often but, every now and then I awake in the middle of an episode of anaphylaxis.  Sometimes the episode can be rather violent.  Sometimes it is relatively mild.  Regardless, it always leaves me exhausted, weak, shakey and in a bit of pain.  This is no way to awake in the morning! These episodes can happen anytime but usually occur while I'm awake.  While awake, I usually have some warning signs that anaphylaxis is approaching so I often have a fighting chance at minimizing its effects with emergency medications.  My warning signs often include feeling lightheaded, difficulty breathing and my legs become exceptionally weak.  These symptoms are the result of my blood pressure crashing. Typically, if I feel these symptoms coming on, I will pull out my epinephrine and some other medications reserved for emergencies.  When this happens, I know I must quickly find a place to get off my feet before I end up being a heap on the floor gasping for air.  Lying down

I have had a few friends ask questions about my health recently. These questions were not specific technical questions indicating a familiarity with this illness but were very general questions about my illness indicating that some explanations and information might be useful to my family and friends. I felt the answer would be to post a link to a website as well as a link to a YouTube video, but unfortunately, I could not find any concise material to link so I decided to write about my personal experiences and struggles with my chronic illness here. My chronic illness actually consists of two versions of Mast Cell Disease and multiple spinal injuries, exasperated with occasional bouts with cancer. A little more than ten years ago I developed Systemic Mastocytosis which involves numerous internal organs. A few years later I developed another version of this illness which involves the skin called Cutaneous Mastocytosis to add to my systemic illness. Mast Cell Disease is cla