Scattered Thoughts . . .

Those of us struggling with Systemic Mastocytosis, and all its variants, have to contend daily with a long list of symptoms. These symptoms are sometimes mild and sometimes debilitating. The symptoms can affect my legs one day and my brain the next. Sometimes symptoms are neurological in nature and sometimes they are affecting my organs. Sometimes symptoms affect my gastro-intestinal tract and sometimes symptoms affect my skin like a burning, hyper-sensitive rash. Sometimes the symptoms can be widespread throughout my body all at the same time. There seems to be little rhyme or reason to it. One common symptom which can be relatively mild or excruciatingly debilitating is bone and joint pain. Today has been excruciatingly debilitating with this far too typical bone and joint pain.  All my long bones hurt... this is a deep pain felt to the core of my body. All my joints feel like they are being stabbed particularly when using them. Even opening a previously opened jar is so painful

When Windows 8 was first released two years ago, I must admit that I found the user interface a bit flat-looking and difficult to navigate. I would try it out at our local stores and always left feeling frustrated because I couldn't figure out how to move around within this new operating system. Well, about two weeks ago, my main desktop computer croaked suddenly. This computer was my main workhorse for graphics, art and photography so it takes much more of a beating than most people's computers. The computer was suddenly non-responsive. It didn't even sound right to me. To make a long story short, I needed a new computer and I needed it as quickly as possible. Two weeks later, I finally have a new desktop computer up and running and configured for my own needs.  I had the option of buying another computer with Windows 7 or I could opt for the newer Windows 8. It really seemed silly to be buying a new computer with a considerably older operating system so I did some

The kids visited us a couple of weeks ago and, as always, we had a nice time. We're overdue for a visit with them again but the house has been a dangerous construction zone the past couple of weeks. Grammy read them a book and then they started watching "Nemo" ... It didn't take long before they were both snoozing and drooling on the couch. Once they fell asleep, I grabbed my camera to get a few shots of the sun falling on their faces during their naps...

Last weekend, I decided it was time to tackle the most difficult part of the waste plumbing project for our new half bathroom. Designing this plumbing was a bit of a challenge because of the very tight, cramped quarters. Not only is everything very close together providing little room for pipes to change directions, but there was very little room to work! Part of my struggles with Systemic Mastocytosis includes cognitive difficulties as well so this hindered my ability to effectively design a drainage plan for this new bathroom.  I must have been having an unusually good day a few weeks ago when I finally was able to clearly envision what I needed to do and I was able to sketch some plans. What is photographed here wass the first part of this project... cutting into the existing waste line and installing a new waste line with fittings for the new toilet, pedestal lavatory, our washing machine, and two new plumbing vents to the roof... all in a very tiny space!  I'm no small

I've been really busy with adding a small half bath to the house lately. Unfortunately, I still have my regular bouts with quite lousy health too. The combination of these two things leaves little time nor energy to get anything else accomplished around the house. One thing I've let go over the past couple of weeks is the lawn. I had some really crappy health yesterday which kept me very close to the bathroom all day so that means it was very difficult to have a productive day. Even on a relatively "good" day, I am only capable of a couple of hours of work at about half speed, at best. On fairly lousy days, I'm lucky if I can clean myself and cook for myself so simple household chores get put on hold quite regularly because of my health. On miserable days, I can do nothing and just walking to and from the bathroom requires more energy than I have to spare. This morning I felt halfway decent and the weather was nice and cool (my health crashes rather quickl

I am still recovering from our outing in Burlington over the weekend for the Vintage Boat Show. At this point I'm not sure which is bothering me more... my usual Systemic Mastocytosis health issues, the overwhelming fatigue from missing a nap while being fairly active or that gash and bruising on my right forearm. I think it is a three-way tie. Although my arm is still throbbing at times (especially since I seem to be knocking it into everything), I am beginning to feel more like myself. There have already been a million supermoon photos posted online but I wanted to add a few more to the mix. Unfortunately, I had a hard time keeping the camera steady because of my health, tremors/twitching in my right hand for days now, and this bruised, throbbing arm.  Compounding these obstacles is the fact that I lost my main workhorse of a computer which I use primarily for art and photography. Until I find the money to buy a new graphics computer, there will be no more digital darkroom no

The back corner of our home, which lately has been bright and filled with the clutter, sounds and smells of construction, is dark and quiet today. I suspect things will remain this way for the rest of the week and through the weekend as I try to recover from yet another bout of poor health. I awoke feeling like I had been hit by a train. My bones hurt... "hurt"... that word doesn't even come close to accurately describing how my bones feel. My joints also hurt to the same level as my bone pain. My spine is inflamed and I can feel every injury my spine has ever endured... and, believe me, these injuries were many, severe and extensive leaving me with two herniated disks, four bulging disks, six compressed disks, two areas with spinal stenosis, osteophytosis, and a broken up disk and vertebra in my cervical spine. These injuries have left me almost two inches shorter and in pain every day. Now, add in all my bone and joint pain and this is what I felt as I awoke this morn

I've been actively working on building and installing a new half bath in our house over the past couple of weeks. "Actively working", considering my health, means working on it only on relatively good health days for a few hours each morning. To say this is a slow moving project is an accurate statement. One of the problems with only working on a project of this sort a few hours at a time is that I spend far too much time setting up, cleaning up and searching for tools I put away a night or a few nights earlier. Unfortunately, I don't have the energy to do anything longer than a few hours in a day so I do what I can when I am feeling capable. My health is kind of lousy today and tonight so I am spending a little time on the computer and thought I should share about a problem I had with this bathroom project over the past few days... The new drill and hole saw necessary for this small half bathroom installation. The latest frustrating problems arose while w

My latest dip in health started late last night. Nausea and associated lower gastro-intestinal issues kept me in the bathroom for an hour or two. (I really need to get that second bathroom finished... my current project.) In the big scheme of things, last night was not miserable but I knew it was a sign that things would deteriorate further today. There are all sorts of signs of quickly deteriorating health for Systemic Mastocytosis patients. During these periods, we become much more vulnerable to idiopathic anaphylaxis as our mast cells continue to degranulate at a rate which is much more disastrous than what should be normal. With this mast cell degranulation comes nerve irritation, inflammation and excruciating pain. My morning started with some minor cognitive issues. Needless to say, any cognitive difficulties makes home renovations next to impossible. As a result, I spent much of the morning researching and taking notes related to my next tasks in our home renovations rather

My health has been on quite a roller coaster ride lately with some really good days and some painful, lousy and downright miserable days. On those good days I've been keeping busy during my waking hours with some projects around the house. Of course, even on a good day, I can only get a few good hours of work accomplished before my body needs a serious break and a nap but at least I have been getting some things accomplished during my relatively good days. This past Saturday was a beautiful day and my health was cooperating so we headed north to Burlington for a cruise on the lake and then a few drinks at Vermont Pub & Brewery. Sheila's parents joined us and we had a really nice time.  It was nice to get out for a change which my health limits significantly.  Actually, I think the last time we were out of the house for the day was well over a month ago and excluding our time at the lake house was really perhaps two months ago. Needless to say, since I was feeling rela