Scattered Thoughts . . .

After struggling with the first five years or so of my illness so I could finally acquire an accurate diagnosis of my debilitating health problems (now that was a brutal five years), I knew I needed a break from medical appointments. Five solid years of medical appointments every few days... involving quite a few painful, invasive tests... is enough. I quickly came up with a new rule... absolutely no medical appointments through the summer...  June through September. I need a break... I need to enjoy life... I need to focus on me, not my health. For the most part, I've been successful with this rule over the past ten years. Sometimes, however, a rule must be broken. This is one such summer when this rule needed to be broken. As a result, my summer is now over and it is back to business, as usual. My business since procuring this insidious illness is managing medical exams, medical testing and medical care. We've been to the ophthalmologist five or six times in the past week

I can't believe an entire year has already passed but this coming Saturday is the day for the 2015 Lake Champlain Maritime Festival. It seems like we were at the 2014 show (and the sweltering, oppressing heat) just last week! Since I'm a big fan of antique wooden boats, I really do enjoy this show and look forward to it every summer. I wish I could find a nice little wooden runabout for myself with a relatively small engine... maybe at this year's show! Assuming the weather is cooperative... assuming that Sheila's health is cooperative... and assuming my health is cooperative... we plan to be in Burlington for this year's show on Saturday. If anyone would like to join us, just let us know. I know we are looking forward to spending the day in Burlington looking at classic boats, doing some street shopping at the annual Sidewalk Sale and visiting a few watering holes. Until the show this weekend, here are some photos from last year's show... The Ar

Today was a rather slow day (poor health through the night) so I took a little time to shoot a photo of a tank car I picked up on eBay recently. There is some significance to this particular tanker though... it has the name "Gramps" written in large lettering across the car like it is a special production train car rather than a true model of a real train.  The moment I first saw one of these unusual freight cars, I thought of my own grandfather, whom we affectionately called "Gramps", and how he is one of the main people to get me interested in model railroading as a young child. Dear 'ole Gramps is no longer with us but he is in my thoughts often. Both he and my grandmother were responsible for providing piano lessons for me... for my sailboat... for my love of antique wood boats... he got me started in photography... he is responsible for my nautical knowledge and interest in boating... my grandmother is responsible for much of my cooking skills and ab

The grandkids had dinner with us last night and, as always, it was a nice time. A couple of days ago, Lukey took a tumble down a set of stairs with his mom... all appeared fine except for some minor swelling in one area of his leg. The following morning he still wasn't putting any weight on that leg so it was time for a doctor... then the hospital... then after some x-rays, it was determined that Lukey had indeed broken his leg! For now, he has his full leg in a splint. He will, however, be getting a cast shortly (the hospital had computer problems while he was in the ER so they could not view the imaging so they just splinted it for the time being.) So... what does a three year old boy do on a hot summer day when his leg is in a full leg splint? He plays with Papa's trains! Of course, he would probably be doing the same regardless of his broken leg but now his activities are a bit limited. (It is a good thing we already spent time at the lake!) Sitting on the floor and

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

Those of you who follow this blog know that I've been excited about getting our outdoor kitchen grilling area completed. Unfortunately, this project has been put on a back burner. About two weeks ago, I found that the roofing material I need/want for this grilling area is out of stock. This is what happens when the building season is extremely short and places to buy supplies are even shorter. So, I need to wait until this product is back in stock. Who knows how long that will take?  In the meantime, I decided to do a "quick" project in Adam's old bedroom.... While he was home on leave... for a whole month... he was supposed to pack up all his stuff, toss out whatever he does not want anymore, and clean up his room a bit. Everything he owned fit into this tiny bedroom so this was by no means an overwhelming task for him nor was it an unreasonable task. Sheila reminded him a few times that he needed to get started on his packing... he chose to just sit in front

Doing any sort of work on any of my model railroad models is just about impossible nowadays without getting some sort of help. I can no longer focus on anything up close even when wearing my progressive lens eyeglasses.  A week ago, I was working on my largest locomotive. It is a very large locomotive measuring 18 inches long and seven inches tall! That is just the size of the locomotive without the tender. Even considering how large this locomotive is, I still cannot focus on anything on this model when it is in my hands.  I can focus just fine (on most days) when the model is at greater distances. It is just close-up focusing that is a problem. Although, some days I cannot focus on anything... near or far... due to complications of Systemic Mastocytosis.  Honestly, I'm not sure if it is my medications which hamper my vision to this extent or if it is the disease or a combination of both. Although, my ophthalmologist has found signs of some retinal problems, my emergency med

Sometimes... you make a stupid mistake and then it somehow snowballs into a series of mistakes.  Sometimes... these mistakes are really nothing worth mentioning in the big scheme of things and sometimes they are pretty significant mistakes. Right now, I am paying the price for a pretty significant mistake which snowballed into a series of mistakes. When Sheila and I were getting ready for bed last night, I quickly realized that I had missed my dinnertime dose of medications. This alone is serious enough to cause anaphylaxis and a myriad of additional debilitating, nauseating, disgusting and dangerous symptoms. On the positive side, my health hadn't crashed yet as it usually does when I make this mistake so this was good news. (...probably because of the additional medications I took over the weekend so we could safely travel to Burlington for a short cruise...) This means I had time to correct this stupid yet potentially dangerous mistake.  I took out my nighttime dose of medi

We had some hazy but rather nice weather yesterday so we decided to head to Burlington and Lake Champlain for a short afternoon cruise on the "Spirit of Ethan Allen". We headed northward with Sheila's parents for an afternoon in Vermont's little quaint city on the lake. We always enjoy an afternoon roaming around Burlington... hopping from bar to restaurant to bar... so it was nice to get to do some of the same this weekend. We happened to be first in line to board the boat so this allowed us to get a prime table. The sun was blazingly hot while we were standing in line so we opted for choosing a table at the stern of the top level of the boat which was under cover. It turned out to be an exceptionally wise choice! We had a few drinks on board and then walked up toward Church Street after the cruise. The heat and humidity were enough to prompt me to request a table under cover rather than out on Church Street in the sun. Usually, everyone wants to sit ou

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