Scattered Thoughts . . .

Systemic Mastocytosis patients are very sensitive (for lack of a better term) to many foods.  In particular, foods which are high in histamine are very dangerous for those of us with this illness. Foods high in nitrates and other preservatives are dangerous for us as well.    Typically, frozen foods aren't too bad for us if they were flash frozen without preservatives.  For example, frozen vegetables are really just flash frozen cut vegetables...  nothing wrong with that, right?  Well, nothing is wrong as long as the frozen foods are handled properly. Now, let's move on to frozen prepared foods such as frozen meals, frozen dishes, frozen ravioli, frozen chicken, etc...  These prepared foods start off bad for us (Systemic Mastocytosis patients) because they are high in preservatives.  These preservatives are known to cause sudden mast cell degranulation which, in turn, causes anaphylaxis.   As if that is not bad enough... Now, if these frozen meals are handled properly w

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

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