Scattered Thoughts . . .

Today I awoke feeling so miserable and in so much pain that I needed to call my doctor to ask if I should make an appointment or just go directly to the emergency room.  You know when you are already thinking of an emergency room visit before you even call your doctor, the pain is bad! Since Monday morning, I have been awaking every morning with intense pain in the area of my kidneys.   This pain has been so bad at times that I can barely walk across a room. The odd thing is that the pain has mostly been when I awake in the morning and then wanes throughout the morning. This problem, however, seems to be a relatively common problem for those of us suffering from the more aggressive form of Systemic Mastocytosis.  The mast cells erroneously attack an internal organ, for instance the kidneys, and that causes irritated and inflamed nerve endings on and around my kidneys.  But, before we assume this the cause, we must rule out everything else. For Systemic Mastocytosis patients, ther

The past few days have been quite miserable, to say the least!  In one of my blog posts from the other day, I mentioned that I was thinking my mast cells were attacking my kidneys.  I suppose that could be happening but this is, by far, the worst pain I have had in a very long time.  We came uncomfortably close to an emergency room visit yesterday morning.  Sheila stayed home from work until we decided to either drive me to the hospital or until my pain subsided enough to handle the day on my own. The pain is only problematic between 3-9am...  I still have the pain throughout the day but it is quite tolerable the rest of the day.  This pain is a burning, searing pain seemingly emanating from the lower part of my kidneys in my back and then radiating out to all of my lower abdomen down to my groin making the simple act of walking excruciatingly painful, if not impossible.  This pain rates an 8 on the 10 point pain scale. I've been flushing my body with as much water as my stomac

In my post about an article featuring the Waterbury Train Station in Model Railroader magazine the other day, I mentioned that I had created a painting of this station shortly after it was renovated and restored. Since I had mentioned it here, I felt I should add an image of my painting as it can be seen hanging on our hallway wall. This is an 8"x10" Giclee print on heavyweight art paper, double matted, and framed to 11"x14".  This is a really nice size since it does not require a lot of wall space. I have always had an interest in trains and am a lifelong model railroader so my attention is often diverted toward old railroad tracks, old stations, and old trains.  I also have a background in civil engineering and architecture so distinctive architecture always captures my attention.  This landmark is no exception.  Someday I should just spend an entire day at this station shooting photos starting from before the arrival of the first Amtrak Vermonter in the mor

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...

I received the latest issue of Model Railroader magazine yesterday...   both in print and digitally through Zinio (I love my magazines in digital format through Zinio for use on my Kindle Fire...  more on that in another blog entry)...   and I came across an article about the recently renovated and restored Waterbury Train Station! I had created a painting of this beautiful train station right after it was restored.  This truly is an historic and beautiful train station.  Now, it is being featured in Model Railroader magazine.  They even included scaled drawings of the train station for those modelers who desire to model this historic building. It is always nice to see a local landmark in a national publication!  For those train and model railroading enthusiasts, pick up the June issue of Model Railroader magazine!

Just thought I would post a couple of sailing videos which I felt were entertaining and do a good job at conveying the exhilarating excitement of sailing. This first video is of a guy who went on a 2000 km trek over the course of 36 days, alone in a small racing sailboat...  the Laser.  A lonely adventure but, man, can that Laser move!  Great video! Laser2 sailing 2000km,36 days Slovenia-Albania-Slovenia from igor Stropnik on Vimeo . The next video is of guy sailing a Sunfish sailboat (the slightly bigger brother of my own Minifish sailboat) in cold weather on a very windy day.  Exciting video! You can really see how physically demanding sailing can be even on a very small sailboat.  I am really looking forward to getting back out on our sailboat with my new little waterproof camera!

Ever since my health problems started, I have been carrying a cellphone wherever I go.  I rarely use it socially but have needed it to call 9-1-1 for myself far too many times. Today I have even more health complications and need to stay close to help.  This poses a problem while we are at the lake house because there is absolutely no wireless service anywhere near the lake.  The lake is still close to one of our local hospitals so, geographically, there is no major problem.  So, what is the solution for effective communication in case I need help in this relatively remote area?  Or, what if Sheila or Adam need help while out hiking, biking, kayaking or sailing? Radios. Before cellphones became 'mainstream' for families, you would often see families using small walkie talkies at amusement parks and other places families frequent.  Those were decent radios but they were nothing like some of the radios which are available today. Much of our activities at the lake invo

It is time to start getting the boats ready for another summer season.   In particular, we are really looking forward to getting back out on the sailboat.  There is nothing like silently and quickly skimming across waves...  being splashed and sprayed...  trying to coordinate fighting the rudder to keep it where it needs to be with one hand while hanging onto the tugging mainsheet with the other...   your grip on the mainsheet and arm aching while your stomach muscles are straining as you lean far off the boat with your feet hooked under the hiking strap trying with all your might to not only keep your own balance but to keep the boat from capsizing...  what an exhilarating sport!  Meanwhile, your family and friends watching you from shore just see your sailboat cruising smoothly off in the distance instead of fully understanding the exhilarating struggle between you and forces of nature as you zip across the water.  The gusting wind is pushing and tugging...  the water is pounding the

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