Scattered Thoughts . . .

Late last night, my spine suddenly was on fire... I had difficulty getting up out of my chair... I had difficulty sleeping... rolling over was excruciating. Today is even worse. The pain has been absolutely brutal.  The pain is a searing, burning pain in the lower half of my spine... radiating to my hips, around my kidneys and through my groin... whenever I try to put any weight on my legs, my legs experience tremors and the pain instantly jumps to a big fat 10 on the 10 point pain scale.  There are times when I almost ended up on the floor because I could not stand on my feet without actually seeing stars due to the intense pain. Reaching out for the couch, the bed, a chair and the kitchen table helped me keep from being a heap on the floor. This has been an exceptionally bad day. Most times, despite my extensive spinal injuries, I get around just fine (with pain, but I get around just fine) but there are times when my spinal injuries are excruciatingly painful. During these pai

Last week, for the most part, I experienced a lot of lousy health which interfered with getting anything accomplished on the house. We're pretty antsy to get this other bedroom finished but my health is making that seem like an insurmountable task. I don't even remember what the health problems were last week... some combination of typical Systemic Mastocytosis symptoms... but I spent most of the week sleeping. I felt halfway decent on Saturday but only managed to accomplish about an hour of work before the overwhelming fatigue took over and rendered me useless.  On Sunday, I felt great! It was Sheila's last day of a usual short weekend and it was Mother's Day too so I decided to use my new energy by spending time with Sheila rather than working on the house. I figured I could put this time aside for Sheila and then work on the house the following day.... Wrong again. My health crashed again. At some point this week, I did manage to squeeze in an hour or two of

When I first procured this illness... Systemic Mastocytosis... I experienced a lot of very varied symptoms. Once I started on a cocktail of medications, some of these symptoms slowly waned. Most did not, but some did. Back then, I experienced all sorts of neurological symptoms. I experienced so many of these neurological symptoms that all my doctors thought I was developing Multiple Sclerosis. Fortunately, my cocktail of medications slowly helped to alleviate these symptoms. Sometimes, however, my health dips quite low and these symptoms appear again...  today is one such time. Today, my left hand has been twitching consistently all day thus far. Also, my taste buds seem to be all screwed up today... nothing tastes right! Everything is tasting very acidic.  In the big scheme of things, these two symptoms are hardly worth mentioning but it is worth mentioning that when twitching appears and continues for a few hours, it becomes quite maddening! All food tasting acidic is frust

Doing any sort of work on any of my model railroad models is just about impossible nowadays without getting some sort of help. I can no longer focus on anything up close even when wearing my progressive lens eyeglasses.  A week ago, I was working on my largest locomotive. It is a very large locomotive measuring 18 inches long and seven inches tall! That is just the size of the locomotive without the tender. Even considering how large this locomotive is, I still cannot focus on anything on this model when it is in my hands.  I can focus just fine (on most days) when the model is at greater distances. It is just close-up focusing that is a problem. Although, some days I cannot focus on anything... near or far... due to complications of Systemic Mastocytosis.  Honestly, I'm not sure if it is my medications which hamper my vision to this extent or if it is the disease or a combination of both. Although, my ophthalmologist has found signs of some retinal problems, my emergency med

I have been very fortunate this Christmas season!  We have had an exceptionally busy, hectic and exhausting December and, for the most part, my health held up surprisingly well. Now, however, we are a few days past Christmas and my health has crashed... and it has crashed spectacularly. I had a few bouts with anaphylaxis causing dizziness, palpitations, tachycardia, and breathing difficulties which all leads to exhaustion.  Whenever my heart responds to anaphylaxis, my heart-rate jumps to the 120-180 beats per minute range and it can stay there for an hour or two. Having your heart-rate at this chest pounding level is similar to running for a couple of hours... or playing a basketball game for a couple of hours... or any other strenuous activity for hours.  I am left feeling exhausted and my entire body aches for days. The degranulation of mast cells which caused this anaphylaxia also causes nerve irritation and inflammation.  Needless to say, in addition to the overwhelming fatigu