Scattered Thoughts . . .

It seems that most people think that no news is good news. Well, that is not the case for me. Actually, that never has been the case with me. I can tell you with absolute certainty that if I go quiet for a while, something is not quite "good". I am still struggling with my health (since Christmas) and I have had a few relatively minor incidents and episodes over the past couple of weeks. That being said, I think that if I look at how lousy my health has been over the past four months, my health has actually been relatively stable in the past couple of weeks. It is still worse than I feel it should be and I feel rates as quite lousy and debilitating. I've struggled with some mast cell-related issues, as always, as well as some spinal injury-related issues over the past couple of weeks. As one would expect, struggles with both of these issues still seem to grind my life to a halt. This grinding wears me out too! I never celebrate Easter so never really have anything t

We went for a nice Springtime walk with the grandchildren the other day. The weather was relatively warm, clear and sunny. I think the temperature was in the 40's for a change which is much more tolerable than the freezing daytime temperatures and sub-zero nighttime temperatures we've been experiencing for many months now. With the sun shining and the temperatures well above freezing, Sheila decided it was a good afternoon for a short walk around the block with the kids. The ground, for the most part, is still covered in a foot or two of snow and we still have snowbanks up to four feet tall so there is still a lot of snow to be melted out there. Unfortunately, all this snow makes for a lot of puddles and deep mud as the ground continues to thaw. Much of our walking route around the block was mostly dry, however, there were some areas with water-filled pot holes and streams of water run-off. Needless to say, the kids were attracted to these wet areas like ants to sugar

After a lousy evening last night with some painful and debilitating health issues which left me drained, weak, and having difficulty just walking across a room, I am having a surprisingly "good" morning! The pain I experienced the last few days was miserable and last night that pain moved into the area of my kidneys only making the pain more widespread and bordering on intolerable. I am feeling a bit better this morning. Of course, this is with the help of some extra emergency medications which come with their own problems and side-effects but these medications have elevated my health into a far better place overall. I also managed to get some extra sleep last night which is always good. I had enough energy this morning to shower and shave. I was even thinking clearly enough to fix an email issue I've had for the past few days! I was having such cognitive difficulties that I could not figure out how to resolve this email issue. (Incidentally, my web hosting service co

My health has crashed again so I am down for a few days. I was feeling pretty good this morning, relatively speaking. I was having some cognitive difficulties which I have been struggling with for the past few days but I have had far worse problems related to this in the past so I wasn't all that concerned at the time. When I awoke from my usual afternoon nap (and always much needed nap), I was not feeling well at all. That is very unusual. I usually awake from my afternoon nap feeling pretty good and refreshed...  not today. Those pains in the areas of my lower kidneys was back again. My left leg was weak and that is a sign of either worsening spinal issues or impending anaphylaxis. To make a long story short, I kept getting weaker and weaker until walking was difficult and slow going. I quickly realized that my blood pressure was probably dropping to dangerous levels. Before long, I was feeling as though I would lose consciousness very soon. I opted for taking some emergenc

This morning I wrote about recovering from a painful week of lousy health... I think I spoke too soon... I had slept all afternoon which is very much a typical day for me. I really need to lay down for a few hours everyday. This is pretty much a requirement for survival. When I avoid that daily nap, my health quickly deteriorates. So, I slept most of the afternoon but, when I awoke, I wasn't feeling "right".   I don't know what it was, but something just didn't feel right. I took my dinnertime dose of medications and we started on dinner.  I wasn't hungry in the least though and was feeling generally lousy. Within minutes after dinner I found myself back in the bathroom with worsening health again. I had some relatively minor dizziness, nausea, cramping, weakness, and my legs were not cooperating. This quickly deteriorated into some typical Systemic Mastocytosis lower GI problems including its unique brand of diarrhea. Oh, it has been a fun week. When

The six foot tall piles of snow outside our bedroom window have now melted enough to allow the early morning light to stream into the windows affording me a view of the kayaks and sailboat sticking out of the snow in the yard. This, naturally, reminds me that the boats and car roof racks will need some work before we can take advantage of the incredibly short boating season here in Vermont. The melting snow also reminds me it is Springtime and I need to get started on my to-do list which was put on hold due to weather conditions. I have plenty of home improvement projects which need to get done too but getting the boats ready for summer is always the first priority. I have learned that if I delay getting the boats ready, it will be too late in the short season to even try to get the boats ready and then we never get out on the boats at all.  My focus is on getting the boats ready for use for the start of summer in June... and that gets me thinking about getting back out on Lake G

I was going to write that my health has been quite lousy the past week but, upon thinking about it more clearly in somewhat more stable and better health, my health really has been quite lousy for the past three or four months and quite brutal the past week. A good portion of the past week has been spent being nauseated and ill in the bathroom. I've had the usual breathing difficulties, vision problems, tremors, twitching and some relatively minor signs of impending anaphylaxis but mostly have been struggling with lower gastrointestinal issues this past week. I never even wandered farther than about 30 feet of the bathroom for a few days! Now that my health seems a bit more stable, I am dealing with the usual post-episode bone and joint pain. My long bones... mostly my leg bones... and my spine are inflamed. My joints scream whenever I put any weight on my feet. To say I am "uncomfortable" is a bit of an understatement. That being said, I think my mood only soured eno

The grandkids were over again this past Sunday. We all watched the University of Florida win the men's basketball SEC Conference title while Nan and Pop (Sheila's parents) visited. Then we tried to distract their interest in viewing the model railroading video we always watch by instead watching Disney's movie "Planes". I even let them play with two of my model airplanes. They tolerated the "Planes" movie but still wanted the model railroading video. So... we watched the model railroading video at some point later in the day. They certainly get very animated when it comes to this video! I suppose that once the weather is warmer and we can spend time outdoors, the model railroading video will fade from their memories. As much as I love model railroading, I really am tired of seeing and hearing this one video over and over!  I've been trying to make sure I get at least one photo of each of them each week or a video.  I figure if I aim for a photo

A Cessna flying into the sunset over Lake Champlain surrounded by the Green Mountains of Vermont and the Adirondack Mountains of New York. Look closely... is that Champ's head sticking out of the water in the middle of the lake? I hope to get to make a short climb to the top of Owl's Head at Lake Groton this summer and that got me looking for photos from the last time we did any hiking. Hikes, no matter how short and easy, can be a dangerous thing for me. Systemic Mastocytosis can cause anaphylaxis at any random time but especially when my body temperature rises.  This makes hiking difficult for me. Another issue for me when it comes to hiking is my energy level. My energy level has been so low that any sort of hike is difficult. Trying to hike uphill and then downhill is a lot of work.  All this stress on my body also causes a risk of anaphylaxis too. Needless to say, hikes have been few and far between since my health has started struggling with Systemic Mastocytosis.

As I wrote in my last blog entry, my health has been quite poor the past week or so.  Actually, my health has been pretty lousy for the past few months but the past week has been miserable, poor at best. When my energy levels get as low has they have been the past week, I really find it difficult to even care for myself nevermind accomplish something... anything... either for myself personally or for the home. This is something I struggle with almost daily. The Beresford from Central Park All that being said, my plan of attack for this illness and any chronic illness is to find a way to be productive. Being productive provides a sense of purpose. Just 'surviving' through each day is not living... it is not productive... and it is hard to find purpose when one is just 'surviving' rather than 'living'. This is just as dangerous as the illness itself. We all need purpose... we need to be productive, if only occasionally... we need to 'live' and cel