Scattered Thoughts . . .

As I wrote in my previous blog entry, my night last night was less than stellar as a result of some pretty lousy health. It turns out that today has been no better. Actually, today has been worse than all the time spent in the bathroom in the middle of the night last night. I've had difficulty breathing. I've been very weak. My bones hurt like only a Systemic Mastocytosis patient could understand. I'm overwhelmingly exhausted. I'm nauseated. And, after lunch, my throat was inflamed and a bit swollen. Then I passed out.  When I awoke a few hours later, all the symptoms were still present so I knew it was time for my emergency medications.  I've needed epinephrine today and I also needed to take some other emergency medications to try to stabilize my mast cells. Most of these medications cause drowsiness. Compounding this drowsiness issue is the fact that this huge cellular reaction inside my body causes indescribable fatigue also.  I really hate taking these

Shortly after publishing my last post here last night, my health crashed. I had been feeling 'uncomfortable' all night long. Actually, I had been feeling uncomfortable and a little bit 'off' for the past few days so I knew something was amiss and my health would be crashing before long. What I knew was coming hit me in the wee hours of the morning last night. My stomach had been gurgling and making all sorts of noises all day long. This typically is an indication that gastro-intestinal problems are forecast. This held true last night. For those of us struggling with Systemic Mastocytosis, our mast cells indiscriminately choose an organ to attack (for lack of a better medical term... clinically speaking, "attack" is an appropriate description though). Mast cells control many bodily functions and are very important defensive cells in immunology, allergy, and infection. The problem is that my mast cells will respond/attack anywhere in my body for no known r

View of the night sky just after sunset from the deck. I think it is safe to say that we are all looking forward to heading to the lake. As I sit here typing this post, I can hear the rain falling outside my window and I can't help but hope the weather is nicer very soon. There is sailing to do... kayaks to paddle... swimming to be done... short hikes to be done... socializing with guests... a lot of photos to shoot... and simply enjoying ourselves every moment of every day. I'd prefer not to be doing all of this in the rain! Well, really, I'd prefer not to be doing any of that in the rain! Adam is graduating high school on Saturday so he is busy this week with finals and some last minute projects. I know he is looking forward to getting back out on the sailboat. I notice him eyeing the boat whenever he is in the yard. I am sure he is definitely ready to be graduating high school! So Adam is a bit antsy to get to the lake as well. I'm sure Sheila is looking

Although all the parts have been sitting around the house, shed and yard for the past year or more, I finally managed to put together a dolly for my sailboat yesterday. It has been a long time coming! If I had to do it over again, I would definitely change a few things in the design. This always happens though. I design something... build it... and then realize something is just not 'right'. I'm always trying to improve things. I suppose there is nothing wrong with that but it does get a bit tiring especially considering my health. Right now this dolly has a flat tire. When the snow eventually melted a few weeks ago, I noticed that one of the tires is flat. I had already assembled the basic frame of this dolly... the long tongue and the axle... and had mounted two 10" tires on it. All last summer I just propped the sailboat on this makeshift dolly using scrap 2x4 blocking. Unfortunately, whenever I moved the dolly around the yard (ie, for cutting the lawn), the b

The aforementioned dedication ceremony for the "Wall of Honor" at the National Museum of the US Air Force kicked off a weekend full of events for the museum's annual SpaceFest. Below is a short highlight video of this fun event showing some of the many activities of SpaceFest throughout the weekend. It looks like a really fun weekend for kids of all ages!

Last week, while we were supposed to be in Dayton, Ohio at the National Museum of the US Air Force for a dedication ceremony (see my previous post with video of the ceremony), we were attending a prior commitment at Oakledge Park in Burlington, Vermont. Sheila's employer holds a statewide meeting for their employees and a related media event each year and, this year, this meeting and event fell on the day of the dedication ceremony at the National Museum of the US Air Force.  We plan to head to Dayton for our own little dedication ceremony of my "Data Plate" on the Wall of Honor sometime this autumn.  (Assuming fate and my health cooperate.) See the island in the top photo? This flock of geese was flying way out by that island... I used a very long zoom lens to capture this shot. I like the motion blurring of the flock... shows action. I always try to attend this annual event at Oakledge Park with Sheila. She does her thing at the meeting while I walk around the

I've written about this before so, as many of you already know, a "data plate" in my name was to be installed on the "Wall of Honor" at the National Museum of the US Air Force. My plate was installed about two weeks ago and the US Air Force dedicated this "Wall of Honor" in a ceremony last Thursday. Unfortunately, we had a prior commitment which kept us in Vermont on that day. We hope to get to the museum in late September/early October to finally view my name on this wall and have a little dedication of our own. Until that time, I (and we) can view the video of the official dedication ceremony provided by the National Museum of the US Air Force...  I wish we could have been there for the official ceremony with our own group of people but we'll get there soon enough. This is a great honor to be remembered and honored in this way at the National Museum.

When I awoke from my nap yesterday afternoon, I immediately noticed that I was experiencing some pretty intense nausea. Nausea is a fairly regular visitor for any Systemic Mastocytosis patient and I'm no different. At the time, I was hoping that my dinnertime medications would knock that down and I would be feeling better...  I took my meds... unfortunately, the nausea only got worse. We headed out to our local supermarket to pick up some food and this is where the nausea became unbearable. At this point I was holding down puke... I had a few small dizzy spells... and my vision was narrowing. I knew I needed more emergency medications before my condition worsened into all-out anaphylaxis. All these symptoms are signs that my body is headed toward anaphylaxis and unconsciousness. Out came my emergency medications and I popped a few pills immediately.  The nausea stuck with me all night long and there is still a little bit lingering this morning but my condition never worsened in

I have so many health problems that I often forget about some of them until they are thrust back into the forefront of my mind and life. Some of these temporarily forgotten health problems are incurable things like cancer, tumors, and variations of Systemic Mastocytosis symptoms which make their appearances much less frequently. My primary illness, Systemic Mastocytosis, is in the forefront most days. My spinal injuries are in the forefront at all times because these injuries affect everything I want to do, everything I attempt to do and the pain never goes away. Sometimes, however, something happens or I see something to remind me of the things which I do purposefully push to the back of my mind and would prefer to forget.  I suppose this idea of pushing things to the back of one's mind is a way of coping. I purposely try to let go of all the things I cannot control. I don't want to needlessly worry about these things because, hey, I really can't do a damn thing about

A/C Pro Refrigerant with gauge and hose. My car now has over a hundred thousand miles on it and the air conditioner was starting to lose its ability to cool down the car on hot days. For me, this is a serious matter because hot environments cause anaphylaxis within minutes of exposure so I need to ensure my car is able to keep my body cool. So, I made a few phone calls... The price I was quoted was $150...  ugggg. That is a significant chunk of my fixed retirement/disability pension. Most of my ridiculously low retirement/disability pension is spent on out-of-pocket medical costs each month so I already have little room for extra costs. I have some hobbies like anyone else just to keep my sanity in the boredom known as retirement and these hobbies cost more than I see in my bank account every month. I needed another option for this air conditioning dilemma... The first thing to do was to do a search online for a do-it-yourself fix. Naturally, I found one. Not only did I find