Scattered Thoughts . . .

I have already written about my health crashing due to hot, humid weather over the past week but I haven't really written about the early part of the weekend. On the positive side, I think I am finally beyond this latest bout of poor health. Time will tell. Thursday, Friday and Saturday were rather lousy. Well, actually, the whole week was rather lousy but Thursday, Friday and Saturday were quite rough with some dangerously lousy health. I was overwhelmingly exhausted. I could have fallen asleep only a moment after deciding to allow myself to fall asleep at any time during the day. I was fighting staying awake all week long. This should have been my first clue that I was teetering on the brink of anaphylaxis with very low blood pressure... I didn't realize it yet though. I was having difficulty breathing at times. I often have difficulty breathing especially when the weather is hot like it was this past week so I was not associating this symptom with the fatigue. I should

Oh boy was yesterday a lousy day!  Earlier in the morning, I was feeling quite well. I was looking forward to some exercise and my daily physical therapy. I never got that far though... First, around lunchtime, I began to feel something wasn't right. I couldn't put my finger on the problem but I knew some lousy health to some degree was approaching. I ate lunch and then it started... As I was trying to walk my dishes to the sink, my legs would not cooperate. At first, I wondered if they had just started to fall asleep... and hoped it wasn't a mastocytosis issue... or, was this a result of my spinal injuries? My legs not cooperating to such a debilitating level was a bad sign though... my legs really were not cooperating at all...  I could barely move them. I made my way back to the couch. My bones and joints had been hurting since around Christmastime so that was nothing new and they were still hurting but the hurt was pushed to the background as some new symptoms e

In my previous blog entry, I mentioned that I've been experiencing more than a week of quite miserable health. Since I sort of use my blog as a journal for some of the more significant health issues, I suppose I should write about this here. At first, I thought maybe I was experiencing food poisoning... but, sometime in the middle of this holiday weekend, Sheila began to get, stomach cramps and diarrhea too. Now I'm thinking I've been trying to shake a virus... and history has proven that due to my health issues, I sometimes need a few months to shake something like this... or, sometimes I can shake it in a week or two. Time will tell. I was in and out of the bathroom for more than a week... about eight solid days of sickening diarrhea. This isn't "typical" diarrhea of a relatively healthy person who ate something nasty. This was more like the typical diarrhea of people struggling with Systemic Mastocytosis and/or various carcinoid tumors. I'm going to

I had some relatively minor health issues over the weekend while we were with the grandkids but didn't think much of it. I threw some extra medications at my health and pushed on forward.  The past few days, however, have been rather lousy.  In hindsight, I know that the relatively minor health issues I experienced in the preceding days were clues that my health required immediate attention. I should have stopped all activity... I should have taken some emergency medications rather than just some extra medications... and I should have tried to rest and recover. Instead, my health progressively worsened as I tried to ignore the warnings and push on through our activities with the grandkids. I haven't been able to wander far from a bathroom. Sheila and I ran into town last night to pick up some groceries and even that very short trip was a problem. My current gastro-intestinal problems are fairly bad (it has been worse though)... I've been having some difficulty brea

I had thought it was a pretty lousy night last night with all that nausea... tonight has been far worse being sick as a dog in the bathroom. I had some sudden anaphylactic-type symptoms as well as nausea and stomach cramps... then all the even worse miserable symptoms hit and I spent far too much time and energy being sick. I've now taken my nighttime medications, extra medications and emergency medications... and, right now, I feel rather poorly which is a significant improvement from my time in the bathroom... but, I feel as though I'll probably be back in the bathroom before long... I'd just like to sleep peacefully.... UPDATE:  It is the following morning and my biggest issue this morning is that I am worn out, generally feeling lousy and I am groggy from the emergency medications. Oh... and these emergency medications make me very hungry!  

I am back into recovery mode.  It is funny...  well... maybe "funny" isn't really the most accurate adjective... but, even after having Systemic Mastocytosis for more than 10 years, I still forget how much down time my body and health requires. It isn't until I have tasks and projects stacked up like aircraft in a holding pattern waiting to land at a crippled airfield that I clearly hear that voice... "Hey... hey you, there... you are sick! What makes you think you could make plans to get things accomplished like a healthy person? Do you need another reminder of just how sick you are?"  Then I suddenly get whacked with crappy health. Last night we trekked up to Lowes to pick up a few more patio blocks (I learned long ago that I need to break all projects down into small tasks... we need more than a "few" patio blocks but I can only handle a few at a time) for our kitchen grilling area project in the backyard. We had no problems with that other

I've never really been a big fan of poultry even before my illness. In fact, you would often find me in the backyard at the grill with a thick, juicy steak on Thanksgiving Day while my family was inside waiting for some tasteless bird to come out of the oven. Don't get me wrong, I love tasty grilled chicken... deep fried chicken... chicken parmesan...  chicken curry... and even chicken cacciatore... but I'm really someone who loves beef and pork. Poultry is rarely something I would order in a nice restaurant (and never something I order in a less-than-nice restaurant if I feel I may get bad poultry).  Even when I was healthy, before this insidious illness, chicken would make me feel slimey and I would be hungry again within an hour. Fish would affect me the same way. I always just figured that I am more of a hearty meat and potatoes sort of guy. And, let's be honest, I am, always have been, and always will be a meat and potatoes sort of guy. It turns out that perhap

I haven't written much about my illness lately and since today is a day of recovery for me, I thought I should write a few words today.  Seeing some of these symptoms in writing might give some important insight to some other patients as well as provide some insight to those in my life who may be wondering how and why I need a "down day" when I use this term. Yesterday morning, I felt fairly good considering my overall health. I classified it as a good day when I awoke and had a long list of things I had hoped to accomplish throughout the morning. I took care of a little bit of laundry and I did my daily physical therapy (mostly for my extensive spinal injuries but this also helps with my Systemic Mastocytosis). I made lunch. Then I was out of energy and needed to lay down to nap for a few hours. This is a typical, run-of-the-mill good day with a debilitating chronic illness. I get quickly and easily worn out just from a few mundane light activities.  When I awoke fro

When I was writing about my health last night (my previous blog post), I knew my health was not headed in the direction I had hoped. I suspected it might be a long night... and, although it was not as miserable as it often gets, it was indeed a long night spent in the bathroom feeling rather miserable. The nausea continued to worsen as I was typing last night. My breathing didn't get worse, but it did not improve much with epinephrine sprayed into my lungs. That provided only temporary relief allowing me to get some much needed oxygen into my body by opening up my constricted lungs if only briefly each time.   Eventually my intestines started gurgling... a sure sign that I must find a bathroom quickly and that I must take some extra emergency medications as soon as possible (it is difficult to do when you are sick as a dog). The gurgling intestines definitely created a need to spend some time in the bathroom through the night last night... oh, fun times! My episode and post-e

Yesterday... it was brutal for a couple of hours. I was in and out of the bathroom, terribly sick and nauseated, and teetering on complete anaphylaxis. It was not a pleasant few hours. Systemic Mastocytosis is a rare illness in which the body's mast cells will indiscriminately 'attack' the body rather than their usual enemies such as wounds, pathogens and allergy. During this process, the mast cells will release a bunch of mediators which causes countless symptoms including anaphylaxis.  Typically, I do well at handling most of the resulting symptoms but anaphylaxis is a tough one to handle. When all these mediators are dumped into the body by my mast cells, my body responds by going into anaphylactic shock or at least bordering on anaphylactic shock or anaphylaxis. Yesterday, after breakfast, I started feeling rather poorly. My stomach was bothering me. I was a bit nauseated. Before long, I knew I would be sick and in the bathroom. I checked for my pulse... I had a

This entire week has been one health problem after another. I honestly was fighting back tears as my health crashed into anaphylaxis last night. The tears weren't because of pain nor simply because I was feeling miserable. The tears were because I have been so unproductive this week and I now had to accept the fact that the next few days would be, at best, a recovery period of more nonproductivity. This weighs so heavily on me, I suppose, because I want to do so many things around the house but can't... because each day I lose due to this debilitating illness, is one less day I will have in my life. Now, once again, I didn't just lose another day, I just lost a full work-week and this downtime of nothingness promises to be longer. We were doing some light shopping in Williston and South Burlington last night... the first store we visited was all it took. As we were walking into Bed, Bath & Beyond (we hadn't even entered the store yet), I was experiencing breathing

I've had debilitating ankle pain for the past 11 days now. The first few days I could not even put any weight whatsoever on my left foot. Since then, I've been hobbling and limping around with a cane. Needless to say, very little has been accomplished around here for the past week and a half. A few days ago I wrote that I realized that I probably injured some nerves while working on the waste plumbing for a new bathroom that I am trying to install. There is no doubt that I was hard on my ankles while crouching on the floor and sitting on my feet on an uneven, unfinished wood floor. I was also crouched down in a tight crawl space for part of the plumbing project. These activities were no help to my ankles, knees, shins and lower back, that is for certain. This morning when I awoke, my ankle pain seemed to get a little bit worse again. It was raining out and the moist rain always affects my bones and joints since I've been struggling with Systemic Mastocytosis (or perhaps

Shortly after publishing my last post here last night, my health crashed. I had been feeling 'uncomfortable' all night long. Actually, I had been feeling uncomfortable and a little bit 'off' for the past few days so I knew something was amiss and my health would be crashing before long. What I knew was coming hit me in the wee hours of the morning last night. My stomach had been gurgling and making all sorts of noises all day long. This typically is an indication that gastro-intestinal problems are forecast. This held true last night. For those of us struggling with Systemic Mastocytosis, our mast cells indiscriminately choose an organ to attack (for lack of a better medical term... clinically speaking, "attack" is an appropriate description though). Mast cells control many bodily functions and are very important defensive cells in immunology, allergy, and infection. The problem is that my mast cells will respond/attack anywhere in my body for no known r

Last night was one of those exceptionally bad nights... a bad, bad night... When Sheila and I headed to the bedroom for the night, I was feeling rather lousy and suspected my health would be crashing before long.  My stomach was upset and gurgling... I was very nauseated holding back vomit... I was a bit dizzy... and I had been flushed all evening. I should have jumped on taking extra medications and emergency medications right away. I don't know why I didn't... perhaps I was experiencing cognitive problems also so was not thinking clearly. Anyway, I didn't take any extra medications. Before long the dizziness felt more like light-headedness and I definitely need to get to the bathroom as soon as possible. I was sick as a dog.  At this point, I knew I needed extra emergency medications but now I was stuck in the bathroom, sick, without a glass for water to help down a few emergency pills.   I knew the first thing I needed was anti-nausea medications. The nausea was