Scattered Thoughts . . .

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

This past Sunday, the grandchildren were here to join us for dinner. I made some cheese ravioli, meatballs and tomato sauce for dinner.  I rarely make ravioli but it was pretty good... well, it was a nice change anyway. Lukas was fairly easy to capture in photos that afternoon but Kenzie was a bit difficult this time around. Either she kept her back to me whenever I was holding my camera or she was busy doing something elsewhere. She did, however, want to view the photos on the back of the camera so she kept squeezing between me and my camera to push buttons and swipe the screen. I showed the kids the video I put together from a visit a couple of weeks ago... that captivated them and they get very animated seeing themselves and family members on our television. The funny thing is that every time they saw themselves playing with their Thomas the Train train set, they would jump up and run over to the trains to play again. Their attention was constantly being diverted back and fort

A friend of ours, Anne, recently shared a few photos she shot while visiting a butterfly conservatory in Massachusetts a few days ago. If you've ever tried shooting butterflies you know how difficult it can be to get some nice shots of them! Anne shared a really nice album and it prompted me to go digging for some photos I shot in the butterfly house at the Cincinnati Zoo and Botanical Garden when we visited in 2009. These feathery, lightweight day-flying insects are difficult to follow in flight which makes it exceptionally difficult to capture a nice photo of them while in flight. To be honest, I don't know if I have ever managed to capture a decent photo of any butterfly while in flight! If I ever do, I am sure it would be completely by sheer luck... and I'm not really the luckiest guy in the world so accomplishing this is highly unlikely. I have, however, managed to capture a few nice shots of butterflies perched on plants while bathing in the sun (not me...  the bu

Today is Rare Disease Day. (Or, is it Rare Disease Awareness Day?)  Because of this occasion, I thought it would be appropriate to write about my feelings toward my illness, Systemic Mastocytosis, and awareness days such as today. In short, I suppose you could say that I feel similar about today's awareness day as I do on Memorial Day. On Memorial Day, I'm reminded of all the ghosts whom have left empty holes not only in my life, but it seems like in my soul as well.  Memorial Day is not a pleasant day for me and I tend to lock myself in my home on Memorial Day weekend. I don't want to watch movies of war... I don't like the memories fireworks evoke... I don't want to do anything which will remind me of what I try so hard to put into the back of my mind every day. Rare Disease Day feels the same to me and only reminds me of my early struggles with this illness... how long ago that was (read how unbearably long I have been struggling)... the support groups a