Scattered Thoughts . . .

My health has been deteriorating consistently since my last doctor visit a month ago. My new specialist (for a little more than a year now) decided to attempt to simplify my myriad of medications. Some medications were eliminated while others were increased. He sort of consolidated similar medications while eliminating one or two he felt might be unnecessary and added one medication that he felt might help.  These changes did slightly simplify my four daily doses of medications but, unfortunately, my health has been in serious decline since my last visit a month ago. I was getting more and more groggy, exhausted and weakened with each passing day. I was spending more and more time in the bathroom sick (no more needs to be said about that here). I was dizzy and I wasn't thinking clearly. Oddly, even though I was overwhelmingly groggy, I was feeling exceptionally restless. I was groggy, exhausted and restless all at the same time. I slept... a lot... and still couldn't get ne

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 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

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

Sometimes a lousy night of health like I had last night continues on into the following day. Today is one such day. It is almost 24 hours since my latest transient health problems began last night and I am feeling just as lousy... extreme nausea, gurgling intestines, stomach pain, weakness, overwhelming fatigue (I slept all afternoon), and I am just feeling miserable.  I took some extra medications last night that target the gastrointestinal tract as well as a medication to help minimize the nausea. I added more extra medications today...  some extra mast cell stabilizers, more medications to target the gastrointestinal tract, and I'm about to add more anti-nausea medications.  Systemic Mastocytosis is unpredictable but after using up precious energy as I did during our trip to San Antonio, I know I should expect some lousy health. The problem is that I just cannot predict which problems I will experience...  which symptoms... how many symptoms... the severity of symptoms... 

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

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'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

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

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

We finally managed to see some sunshine today! This is something we have not seen here in Waterbury in such a long time that I felt as though I was in a foreign land on a foreign planet! Seeing sunshine and deep blue skies hasn't occurred in so long that it truly appeared as strange as a mint green sky.  It was a perfect day to finally get a few projects accomplished outdoors. Unfortunately, my health was not cooperating so I stayed indoors and tried to recover. My health started heading south late last night after a very filling dinner. I certainly know better than to eat too much (this is one of my triggers for anaphylaxis and gastro-instestinal issues too disgusting to describe here) but dinner was a delicious prime rib and I could not help myself. Nausea set in... some bad cramping... a number of visits to the bathroom... a gurgling stomach all night long... anti-nausea medications were necessary as were extra H2 blockers to help stabilize my health before I crashed into ana

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

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...