Scattered Thoughts . . .

As our atmospheric pressure drops due to a cold front with thunderstorms pushing down from Canada, the bone and joint pain caused by Systemic Mastocytosis has increased to an excruciating level last night. "Hyper-sensitivity" is the term of the day today.  Just some very light fingertip pressure is enough to cause sharp pains shooting through my body causing me to flinch and respond vocally.  The pain... all through my entire body... was at its worst last night at bedtime. That being said, I could have been more sensitive to the pain because I was exhausted. All I know is that when we went to bed last night, I felt as though I had something very seriously wrong with all my organs, all my bones... I felt as though I had just been hit by a train and was thrown aside like a rag doll... badly bruised... smashed like a tomato thrown against the pavement. All through the night, I had dreams of being in pain. My dreams took me to some places in my past where these injuries first

An everyday, 'normal' daily life with mast cell disease in any of its forms is kind of lousy even without any complications. When you add in something as mundane and common as the common cold... the cold seriously angers my mast cells... and it is felt all through my body and deep to the core of my bones. I suddenly developed a head cold on Thursday last week. My nose was running like a waterfall for two days. Cold medications didn't help much. Adding extra Mastocytosis medications didn't seem to make a dent in the cold either. Regardless, I needed to add the extra medications anyway to keep my body as stable as possible.   After two days of a constant, neverending waterfall flowing out of my nose, the pathway moved to down the back of my throat in a post-nasal drip...  well, post-nasal flow. Now it is Monday night and I don't have much of a voice and swallowing is difficult because my throat is covered in a layer of gunk. Fun times. Needless to say, with all

The past few days, my level of overwhelming fatigue was so...  well, overwhelming... that I couldn't help but wonder if I had enough energy left to recover. How low does one's energy level need to get that I actually wonder whether you can find the energy to recover? I don't know the precise answer to this question but I do know that it is exceptionally, frighteningly low. I sometimes forget that this overwhelming fatigue is also an active symptom of my illness and not simply a result of wearing myself down. This time, I did also wear myself down. Between the long rail trip and then some activity around the house, I definitely wore myself out. I definitely over-did it. History has proven that when I get worn out from this crazy amount of activity, it can take months to recover. This fatigue, however, can also be a symptom and a clue to impending poor health... a clue to a cascading mast cell degranulation event leading to anaphylaxis... this is what happened last night

As expected, I am still struggling with my health after our long journey to and from San Antonio. What we didn't expect is for Sheila to be joining me this week! Sheila is home sick with a lousy cold... mostly sore throat, runny nose, stuffy head... and, some fatigue as well.  I'm still struggling with overwhelming fatigue, debilitating deep bone pain, and bouts with instantaneous dizziness so bad it knocks me over even when I am seated! This dizziness is actually a bit violent... Even when this dizziness hits me while seated, in an instant, I am trying to catch myself from hitting the floor. When I am standing, I stumble like my world has been instantly tilted to a 45 degree angle trying to grab ahold of something to keep me from losing to gravity.... gravity applying force in a very different direction from which my brain thinks.  What is really odd is that I am constantly falling to my right. In the past, I always fell to the left when these bouts would hit me. This

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

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

My health has been pretty lousy this past week with various issues overlapping each day. Overall, I've been feeling worn out, weak, and just generally lousy. I've had problems intermittently with breathing, dizziness, stomach/gastro-intestinal, nausea, vision, bone pain, joint pain, spleen pain, cognitive function, bordering on anaphylaxis, and probably a few other things I have forgotten about right now. It has just been a rather lousy week. I laid down this afternoon for my daily two to four hour nap. Adam had his wisdom teeth pulled yesterday so we were all already camped out on the couch all day so I just napped on the couch while Sheila and Adam continued to watch television. Our neighbor's two cats spend much of their time every day at our place and today was no different. Before I fell asleep, I saw one of the cats pass back and forth outside. Since seeing the cats coming and going is something I see everyday, I didn't think much of it.  When I awoke from m

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

I awoke this morning feeling exhausted, almost overwhelmingly so. I immediately knew I would not be trying to tackle any big tasks today.  All I managed to accomplish was cutting and installing a small shim for a magnetic cabinet catch and sanding a towel bar for finishing. After these two very small tasks, I was completely spent for the day. It wasn't long afterward that my health crashed completely. Sometimes (weekly or a few times each month) my illness causes anaphylaxis. This anaphylaxis often comes on suddenly but sometimes can come on very slowly over the course of hours. Today was one of those days where the problems built up slowly over the course of the morning. I collapsed for a number of hours... I spent time in the bathroom sick... and I just simply struggled to stay conscious most of the day. Bone and joint pain worsened throughout the day. Today I am even experiencing sore muscles on top of all the bone and joint pain. I didn't even have the energy to showe

I've really had a few weeks of virtual nothingness lately. I've been laid up on the couch trying to recover from some excruciating and debilitating bone and joint pain. At times, I had to deal with the usual Systemic Mastocytosis intermittent anaphylaxis, nausea and gastro-intestinal issues too. Needless to say, it has not been a very productive month as a result. As I lie on our couch, I have a clear view through our living room window of the moon rising from behind the Worcester Range each night. The moon always captures my attention but considering I've been confined to the living room all day, every day, for the past month, the bright moon rising and shining through our living room window is impossible to ignore.  Two things make this full moon worth mentioning. First, the full moon in September is known as the Harvest Moon which oftentimes is spectacular. Second, this particular full moon is also considered a Supermoon because it is so near the Earth at this time

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

For more than a week, I've had severe ankle pain which has left me unable to walk without aid for most of the week. I am now limping around but that pain is still constant. I've had my ankle elevated everyday and I am taking a maximum-allowed dose of an anti-inflammatory medication for the maximum-allowed time. The only side effect thus far is just a bit of drowsiness but that is hardly worth mentioning since I can't do much else anyway. So, what has caused this severe, disabling pain in my ankle?   I often struggle with terrible, debilitating bone and joint pain so this is more than likely contributing to my current problem with my ankle. Now that the pain in my ankle has waned slightly, there is no doubt that in addition to my ankle pain, I am also struggling with my usual debilitating bone and joint pain. The ankle pain was so severe in the beginning that it masked most other pain in other areas of my body. These regular bouts of bone and joint pain are very typica

Those of us struggling with Systemic Mastocytosis, and all its variants, have to contend daily with a long list of symptoms. These symptoms are sometimes mild and sometimes debilitating. The symptoms can affect my legs one day and my brain the next. Sometimes symptoms are neurological in nature and sometimes they are affecting my organs. Sometimes symptoms affect my gastro-intestinal tract and sometimes symptoms affect my skin like a burning, hyper-sensitive rash. Sometimes the symptoms can be widespread throughout my body all at the same time. There seems to be little rhyme or reason to it. One common symptom which can be relatively mild or excruciatingly debilitating is bone and joint pain. Today has been excruciatingly debilitating with this far too typical bone and joint pain.  All my long bones hurt... this is a deep pain felt to the core of my body. All my joints feel like they are being stabbed particularly when using them. Even opening a previously opened jar is so painful

My latest dip in health started late last night. Nausea and associated lower gastro-intestinal issues kept me in the bathroom for an hour or two. (I really need to get that second bathroom finished... my current project.) In the big scheme of things, last night was not miserable but I knew it was a sign that things would deteriorate further today. There are all sorts of signs of quickly deteriorating health for Systemic Mastocytosis patients. During these periods, we become much more vulnerable to idiopathic anaphylaxis as our mast cells continue to degranulate at a rate which is much more disastrous than what should be normal. With this mast cell degranulation comes nerve irritation, inflammation and excruciating pain. My morning started with some minor cognitive issues. Needless to say, any cognitive difficulties makes home renovations next to impossible. As a result, I spent much of the morning researching and taking notes related to my next tasks in our home renovations rather

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

As one would expect, my pain level definitely affects my mood. As my pain increases, my mood worsens exponentially.   Over the past few days I have experienced increasing pain every hour of every day. The pain just seems to get worse as the day wears on and does not subside after sleep. I slept for a solid 11 hours last night and awoke feeling worse than I have all week.  So, you may be wondering... Where is my pain? Quite simply, it is everywhere. My bones hurt deep, deep within the core of each bone but particularly my longer bones. My joints hurt. Every part of my body hurts to the touch. My skin hurts.  The odd thing is that this level of pain did not register in my brain until I noticed a serious change in my demeanor and mood. The moment I noticed I was easily angered was the moment I noticed how bad my pain had gotten. You see... I am in pain all the time even on a good day. My spinal injuries always hurt...  every moment of every day. Quite often I get bone and joint pa

As I wrote in my previous blog entry, my night last night was less than stellar as a result of some pretty lousy health. It turns out that today has been no better. Actually, today has been worse than all the time spent in the bathroom in the middle of the night last night. I've had difficulty breathing. I've been very weak. My bones hurt like only a Systemic Mastocytosis patient could understand. I'm overwhelmingly exhausted. I'm nauseated. And, after lunch, my throat was inflamed and a bit swollen. Then I passed out.  When I awoke a few hours later, all the symptoms were still present so I knew it was time for my emergency medications.  I've needed epinephrine today and I also needed to take some other emergency medications to try to stabilize my mast cells. Most of these medications cause drowsiness. Compounding this drowsiness issue is the fact that this huge cellular reaction inside my body causes indescribable fatigue also.  I really hate taking these