Scattered Thoughts . . .

Today was one of those rather lousy days. It wasn't "miserable" nor "grueling" but it was quite lousy. Systemic Mastocytosis causes all sort of transient symptoms, problems, difficulties and obstacles. One day can be vastly different from another. One moment can be vastly different from the next! Today, however, was fairly consistent... quite lousy. This all started late last night with some flushing. Sheila had noticed a splotchy, deep red rash on my face and neck. I felt "okay" at the time so I just let this first sign of impending trouble just slip by with no countermeasures. By the time I laid down in bed last night, I was experiencing palpitations and mild tachycardia (120-130 bpm). This is a sign that my blood pressure was dropping too low... my body would respond naturally by jumping into overdrive to counter the loss in blood pressure (which is a very good thing)... then my blood pressure would drop again... body would respond.... etc. Co

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

A nice night out with friends for Christmas... Even when my health is relatively well, I am always a bit concerned about the timing of my poor health. I don't actually worry about it because, after all, I can't control my health, but it does concern me enough to wonder about rescheduling and contingency plans. Realistically speaking, just because my health is relatively well at any given moment does not mean my health will continue to be relatively well. If anything, Mastocytosis has taught me to accept and expect unpredictability. Although, to be honest, long before Mastocytosis reared its ugly head, I had already come to terms with unpredictability due to my spinal injuries. "Unpredictability... accept it, expect it, embrace it!" From November until the end of January, we have been quite busy physically and our schedules quite hectic. There were a number of events we were looking forward to and we, as always, were hoping my health would cooperate with this he

Struggling with Systemic Mastocytosis, in any of its forms, makes the ability to be productive both difficult and frustrating. The desire to be productive is there... The desire to accomplish just one small thing on our continually growing to-do list is there... And, the frustration of how this insidious illness hinders all we try to do is always there. Those of us with this illness are familiar with the occasional "good" day. We call these occasional days a "good" day but, for us, "good" is a relative term. For us, good simply means this moment is better than the previous. In reality and more accurately speaking, all days with this illness are a struggle, at best. Some moments are just better than others and it is these better moments which we refer to as "good". Sometimes, however, a week such as this past week just slowly spirals downward. It can start with one noticeable symptom... in my case this week, I noticed a problem with my vision.

The past few days, Sunday through Tuesday, have been spent recovering from a busy day over the weekend.  Whenever I use a lot of energy, my health really suffers and it can take days or weeks to recover. This past Saturday was a very busy day for me and I used a lot of energy which was compounded by missing my much-needed daily nap. Even on a good day, I need to lay down for a few hours every afternoon. That never happened on Saturday though. So... what happens if I wear myself down? The best case scenario would be that I am simply fatigued at an overwhelming level for a few days. This fatigue makes just showering or cooking for myself impossible at times. Sometimes the fatigue gets so bad that walking to the other side of the house is a daunting task. Even reading can require more energy than I have to use! Worst case scenario would be that in addition to the overwhelming fatigue, my overall health suffers significantly resulting in breathing difficulties, dizziness, cognitive d

For the most part, my health over the summer has been relatively good. I've had some lousy health each week but I've been able to accomplish a few things each week. Overall, lately I am finding that if I am religious about taking all my medications, careful about not straying from my very restrictive diet, keep my body as cool as possible and avoid all stress, my health stays relatively stable. Last night, however, my health crashed. It has been terribly hot and humid the past week... bad news for my health. I strayed from my limited diet last night at dinnertime... bad news for my health. I got stressed over a four day-long project getting damaged in an instant last night which means I wasted very precious energy... energy which is very rare to come by... bad news for my health. At some point yesterday, I screwed up one of my doses of medications which I did not realize until after my health started crashing... bad news for my health. I also didn't pick up on a v

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

My Systemic Mastocytosis is rearing its ugly head again this week.  I could be feeling worse... but, I wish I was feeling better.  I feel as though I am in a constant battle which frustratingly involves two steps back and only one step forward, over and over and over... I'm very nauseated this morning...  weak...  overwhelmingly fatigued... mild tachycardia since awaking this morning (now down to 100 bpm... but was up around 120 bpm when I awoke). This is usually a sign that I had an anaphylaxic episode in my sleep before awaking.   During an anaphylaxic episode, if I am awake, I notice a marked weakness and heaviness in my legs, vision becomes narrow, and breathing difficulties start.  These are my usual signs of impending anaphylaxia and I must jump on emergency medications immediately... if I am awake, that is.  If this happens in my sleep, as it sometimes does, I must hope that my body responds naturally and effectively to this sudden drop in blood pressure. On the positi