Scattered Thoughts . . .

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

This past week or so has been incredibly difficult, quite lousy and, at times, downright miserable. Difficulty breathing causing huffing and puffing after simply walking from one room to the next... dizziness... cutaneous mastocytosis rash on my thighs and torso which is itchy, irritated and inflamed and clothes only irritate the problems more... overwhelming fatigue... I cannot possibly accurately express just how debilitating and overwhelming the fatigue actually has been the past few days. This morning, I was sitting in the bathroom thinking about what I could possibly accomplish today. Just the thought of standing up and walking back to my bedroom was overwhelming and seemed like 'mission impossible'. I had to wash my face... I felt all greasy and grimy... however, I knew that if I used any energy to wash my face, I probably would just need to lay down on the bathroom floor rather than my comfortable bed in the bedroom.  I knew I just would not find the energy to walk b

This past week has been an unbearable week of inflammation and debilitating pain. Needless to say, getting anything accomplished this week was virtually impossible.   Standing hurt, sitting hurt, laying hurt and sleeping long enough to keep my health stable was very difficult because the pain kept me awake. Understandably, my mood was negatively impacted. My ability to stay focused on anything for longer than a few short minutes was impossible. What an absolutely frustrating and excruciatingly painful week.  My entire spine was so inflamed it seemed like it was swollen and on fire... constantly... steadily... it burned consistently like the sun.  Each of the areas of my spine that have been injured during my career hurt so badly that it felt as though I had a large swollen red bump the size of a handball at each point of injury.  For those who aren't aware, after two line-of-duty spinal injuries I am left with two herniated disks, four bulging disks, six compressed disks, two a

Overall, my health has been quite miserable and very unstable for the past few months.  What really pushed my health into this bad spell was the fireplace project during the few weeks in December. I was in a rush to get the fireplace to an operating condition before Christmas arrived. Systemic Mastocytosis causes extreme, overwhelming fatigue and this is especially so whenever I over do it and use more energy than my health allows. I'm still trying to recover from pushing myself to finish that project in time for Christmas...  but, the fireplace really is nice. Unfortunately, although "really nice", that fireplace is still not completely finished.  I managed to work on this project about an hour each day this past week.  It still wore me out each day... imagine just a quick hour of light, easy work requiring bedtime immediately... Despite the need for sleep everyday, over the course of the week I managed to fill some open edges, sand, fill some more, sand even more

Disney videos on Grammy's Kindle Fire I went back and looked in the folder of photos from dinner with the grandchildren the other night and I found a couple of decent photos which have Mackenzie in them.  In one of the photos, Grammy is watching short Disney videos with the kids on her Kindle Fire. That kept the three of them busy for fifteen or twenty minutes but it is easy to see that Kenzie's interests are headed in a different direction than Lukey's interests.  Should be fun times ahead! I included another photo of Lukas here even though I shared one of him in a previous post already.  I included it because I thought it was interesting... it is a bit blurry, but a nice photo nevertheless. I was holding my camera in my right hand and the teddy bear (featured in my previous blog post) in my left hand.  If I hold the teddy bear just right, I can also bob his head and move one of his arms with my piano-playing fingers. So, while trying to get a photo of Lukey la