Scattered Thoughts . . .

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

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

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

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

After a very rough week of lousy health and a lot of pain, I started feeling a bit better last night and this morning. As a result, I managed to get a little bit of work done on the house.  In the big scheme of things, what I accomplished was very little, actually...  just a tiny little bit of staining outdoors... but it was more than I had accomplished in at least a week. I stained a new landscaping step I installed a couple of weeks ago along our short stone pathway to the back door. While I had the stain out, mixed, and ready-to-go, I decided to stain the two steps leading up to our front deck as well as a small landing at our back door.  The positive thing is I managed to get a small task accomplished this morning. The negative thing is I feel as though my health has now taken a couple of steps backward again. I slept all afternoon which was necessary and really nice especially since I slept in a nice, cool, air-conditioned room. Unfortunately, I am still completely exhausted

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

When I awoke from my nap yesterday afternoon, I immediately noticed that I was experiencing some pretty intense nausea. Nausea is a fairly regular visitor for any Systemic Mastocytosis patient and I'm no different. At the time, I was hoping that my dinnertime medications would knock that down and I would be feeling better...  I took my meds... unfortunately, the nausea only got worse. We headed out to our local supermarket to pick up some food and this is where the nausea became unbearable. At this point I was holding down puke... I had a few small dizzy spells... and my vision was narrowing. I knew I needed more emergency medications before my condition worsened into all-out anaphylaxis. All these symptoms are signs that my body is headed toward anaphylaxis and unconsciousness. Out came my emergency medications and I popped a few pills immediately.  The nausea stuck with me all night long and there is still a little bit lingering this morning but my condition never worsened in

This morning I wrote about recovering from a painful week of lousy health... I think I spoke too soon... I had slept all afternoon which is very much a typical day for me. I really need to lay down for a few hours everyday. This is pretty much a requirement for survival. When I avoid that daily nap, my health quickly deteriorates. So, I slept most of the afternoon but, when I awoke, I wasn't feeling "right".   I don't know what it was, but something just didn't feel right. I took my dinnertime dose of medications and we started on dinner.  I wasn't hungry in the least though and was feeling generally lousy. Within minutes after dinner I found myself back in the bathroom with worsening health again. I had some relatively minor dizziness, nausea, cramping, weakness, and my legs were not cooperating. This quickly deteriorated into some typical Systemic Mastocytosis lower GI problems including its unique brand of diarrhea. Oh, it has been a fun week. When

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

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

Far too often, I completely miss the signs preceding Systemic Mastocytosis episodes.  Today was another one of these times of missed clues. I had a few dizzy spells late in the afternoon...  This should have been a huge indicator of failing health. I strayed from my strict diet today by eating leftovers for lunch followed by processed food and condiments which are highly restricted for dinner...   I know better and after straying from my strict diet for two consecutive meals I should have preempted any decline in health with extra medications. I awoke from my three hour afternoon nap in a very warm bedroom...   the temperature in the bedroom was in the upper 70s which alone is more than enough to cause anaphylaxia and a violent reaction.  I should have known this would lead to crashing health. Any one of these things should have caused me to immediately jump on taking extra medications...  powerful medications...  and to collect my emergency medications.  I think I have fallen

Last night wasn't one of the best nights of my life.  It certainly wasn't the worst, but it was lousy nevertheless. Once again, my Systemic Mastocytosis negatively impacted my health.  This illness affects my health negatively every day, but that is my "new normal" so I don't really think much about my limitations when my health stays in this "new normal" range. How any transient symptoms manifest can vary greatly so, each time I have any problem of failing, debilitating health, it can be a relatively new experience.  Last night was a little strange... Earlier in the night, I felt 'okay'.  I was feeling a little full or bloated but nothing that would arouse suspicion.  (In hindsight, it should have.)  I had some moderate joint pain, but with the drastic change in weather today, I attributed this pain to the weather.  I was wrong, however, and these couple of things should have aroused some suspicion! In the middle of the night I ended up

For the most part, healthwise, I had a good week while we were at the lake house last week.  And, the previous week was pretty good too.  I am definitely paying the price for all that good health now though! " All that good health"...  That seems to imply that I had years of good health...  or even months...  No, this was just a matter of 12 days or so. A body burdened with a myeloproliferative neoplasm such as Systemic Mastocytosis rarely goes longer than a few days without some debilitating symptomatology.  Having 12 relatively good days was a blessing. Unfortunately, when I have a few "good" days, I tend to overdo it.  I don't nap...  I stray from my specialized diet which minimizes mast cell degranulation...  I become active which causes a rise in body temperature which causes idiopathic anaphylaxia...  activity also causes inflammation and pain in my spine due to all my spinal injuries (for those unfamiliar with my spinal injuries, the injuries inclu

We are back home from the lake house now.  Although it was a great week on Lake Groton and I prepared for this week for months by being vigilant with my daily physical therapy (a daily ritual since my second line-of-duty spinal injury in 1998), it has really taken a lot out of me. My spine is inflamed from dragging around kayaks and the sailboat.  Packing bags into the car didn't help either!  As bad as the spinal pain is, problems associated with my Systemic Mastocytosis are far worse and much more debilitating. Wearing myself down is one of the worst things I can do to my health today and has the same effect on all Systemic Mastocytosis patients.  The absolute worst thing we can do is to miss a dose of medications.  Wearing oneself down takes a close second though and requires the longest amount of time to recover. It just so happens that I did miss a dose of medications on our first night at the lake.  Our daily lifestyle changed so much at the lake that my medications wer

I'm still recovering from the excruciating kidney pain I had all last week and through the weekend but I am up and about and accomplishing small things around the house.  Although we still do not know for sure the cause of this intense pain, it is good that the pain is waning and I am able to accomplish a few little things again. What I am now struggling with, however, is unbearably hot weather so early in the year.  I had to retreat to inside the house by 11:00 am because the heat was so oppressing.  When I retreated to the protection of our home, our little weather station was showing the temperature to be 93 degrees.  By the time I had finished lunch, I was wishing we had the air conditioning units installed in our windows. My health does just fine when the climate is in the 70s.   When it is in the 80s, I need to take a lot of breaks to cool off.  One of the quickest and effective ways to cool down my body is running cold tap water over the blood vessels in my wrists.  This

I had an incredibly fun...  an amazingly beautiful... an uncharacteristically busy...  and a thoroughly entertaining weekend.  Sheila and I spent the entire weekend together and had a very busy schedule of fun activities.  As all patients struggling with Systemic Mastocytosis know all too well, getting to spend quality time together and sharing 'good health' is a blessing...  a rare blessing! We went out to a few restaurants in Waterbury on Friday and got to spend some time with some local friends in town.  Then on Saturday, after a nice breakfast at home, we headed up to Burlington on Lake Champlain to do some shopping for sailboat parts and supplies.  I was feeling relatively good and the weather was beautiful so we decided to make a day of it up in Burlington! We had planned to meet some friends, Frank and Christine, up in Burlington sometime after we finished our shopping.  Turns out we both pulled into the parking lot at the same time.  It was still early in the day...

After having a few rather lousy days, I am finally having a fairly productive morning for a change.  I have already been outside for an hour or more working in the yard. Last night was quite miserable...  some gastrointestinal problems, weak, dizzy and vision so blurry that I could not see a thing...  no reading...   no computers or media...  even watching television was difficult. I suppose I could have just sat around with headphones listening to music but, I must admit, although I am a musician, I quickly get bored with that.  It's sort of a "been there, done that" kind of thing.  Maybe it is just boredom...   after doing absolutely nothing for days (and the better part of this year so far), I need more to satisfy me...  I need "information"...  I need "learning"...  I need stimulation. Many musicians would say that music is  stimulation...  many musicians would say that playing music relaxes them... etc.  Over the course of four decades, I h