Scattered Thoughts . . .

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

The back corner of our home, which lately has been bright and filled with the clutter, sounds and smells of construction, is dark and quiet today. I suspect things will remain this way for the rest of the week and through the weekend as I try to recover from yet another bout of poor health. I awoke feeling like I had been hit by a train. My bones hurt... "hurt"... that word doesn't even come close to accurately describing how my bones feel. My joints also hurt to the same level as my bone pain. My spine is inflamed and I can feel every injury my spine has ever endured... and, believe me, these injuries were many, severe and extensive leaving me with two herniated disks, four bulging disks, six compressed disks, two areas with spinal stenosis, osteophytosis, and a broken up disk and vertebra in my cervical spine. These injuries have left me almost two inches shorter and in pain every day. Now, add in all my bone and joint pain and this is what I felt as I awoke this morn

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

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

It seems that most people think that no news is good news. Well, that is not the case for me. Actually, that never has been the case with me. I can tell you with absolute certainty that if I go quiet for a while, something is not quite "good". I am still struggling with my health (since Christmas) and I have had a few relatively minor incidents and episodes over the past couple of weeks. That being said, I think that if I look at how lousy my health has been over the past four months, my health has actually been relatively stable in the past couple of weeks. It is still worse than I feel it should be and I feel rates as quite lousy and debilitating. I've struggled with some mast cell-related issues, as always, as well as some spinal injury-related issues over the past couple of weeks. As one would expect, struggles with both of these issues still seem to grind my life to a halt. This grinding wears me out too! I never celebrate Easter so never really have anything t

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

This past week or so has been incredibly difficult, quite lousy and, at times, downright miserable. Difficulty breathing causing huffing and puffing after simply walking from one room to the next... dizziness... cutaneous mastocytosis rash on my thighs and torso which is itchy, irritated and inflamed and clothes only irritate the problems more... overwhelming fatigue... I cannot possibly accurately express just how debilitating and overwhelming the fatigue actually has been the past few days. This morning, I was sitting in the bathroom thinking about what I could possibly accomplish today. Just the thought of standing up and walking back to my bedroom was overwhelming and seemed like 'mission impossible'. I had to wash my face... I felt all greasy and grimy... however, I knew that if I used any energy to wash my face, I probably would just need to lay down on the bathroom floor rather than my comfortable bed in the bedroom.  I knew I just would not find the energy to walk b

Like most days, I had a plan for this morning.  It was an extremely simple plan, but I had a plan...  1.  Get up out of bed as soon as possible... 2.  Take my cocktail of morning medications... 3.  Start a load of laundry... 4.  Shower and shave... 5.  Get dressed... 6.  Eat something small so I don't stress my body unnecessarily and run out of energy any sooner than my health dictates... 7. Start the car and clean off the snow (Sheila cleaned off the snow this morning before heading to work so my car was good to go)... 8.  Drive to town to pick up a refill prescription (took the last pill last night)... 9.  If I still have more energy, then try to tackle a small project in the house (I still need to finish that fireplace project)... Well...  I only managed to get to number five, "Get Dressed", before running completely out of energy.  So, here I sit, completely spent for the day simply by getting out of bed, starting a load of laundry, showering and s

As I opened my eyes first thing this morning, I was having difficulty breathing.  I couldn't catch my breath.  I would suck in lungfuls of air but it may as well have been water. I felt as though I was trying to breath oxygenless air in the vacuum of deep space.  I sucked air deep into my lungs... nothing... the air just went in and out and I still needed air. It was like the air had no oxygen in it... or like I had the wind knocked out of me after being slammed to the ground while playing hockey or basketball.     I also was having difficulty finding the energy to wake myself up enough to get up out of bed. I felt as though I went to bed completely exhausted, fell asleep, and now someone was trying to awaken me just a few minutes after falling asleep. This wasn't just trying to wake up. No, this was weakness like I had no control over my own body. This is something with which I am far too familiar... I quickly realized that this is bad news... bad, bad, bad news.  As I

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

In a previous blog post, I briefly mentioned "The Spoon Theory" which accurately, and yet in an almost heartbreaking manner, describes how I must manage my energy each moment of every day. This spoon theory was written by Christine Miserandino who struggles with Lupus.  In this case, the illness is irrelevant. What is relevant is the fact that most chronic illnesses sap all of our energy and we must figure out the best way to manage and minimize this problem in order to "live", not just "survive".  Although I have always struggled in finding the best way to describe this ongoing problem to family and friends so they can accurately understand my now often flaky behavior, Christine has concisely and eloquently found the words to graphically describe this struggle in energy management in her "Spoon Theory".   Before you continue with what I have written here, I urge you to read Christine's "Spoon Theory" so you will understand

I have been very fortunate this Christmas season!  We have had an exceptionally busy, hectic and exhausting December and, for the most part, my health held up surprisingly well. Now, however, we are a few days past Christmas and my health has crashed... and it has crashed spectacularly. I had a few bouts with anaphylaxis causing dizziness, palpitations, tachycardia, and breathing difficulties which all leads to exhaustion.  Whenever my heart responds to anaphylaxis, my heart-rate jumps to the 120-180 beats per minute range and it can stay there for an hour or two. Having your heart-rate at this chest pounding level is similar to running for a couple of hours... or playing a basketball game for a couple of hours... or any other strenuous activity for hours.  I am left feeling exhausted and my entire body aches for days. The degranulation of mast cells which caused this anaphylaxia also causes nerve irritation and inflammation.  Needless to say, in addition to the overwhelming fatigu

There is just something about supermarkets and grocery stores that causes major health problems for me.  I don't know if it is a cleaning product that they all use regularly that somehow triggers mast cell degranulation in my body...  or all those horrendous, dangerous florescent lights...  or maybe exhaust fumes from the loading dock being sucked into their HVAC system...  or some unknown trigger for me....  but, my health crashes more often in a grocery store than any other place. I had a pretty good morning yesterday.  I did some light work on our master bedroom hallway.  I temporarily moved some electrical wiring for the furnace to make room for a pocket door.  I removed some studs.  Then I ran out of energy and figured it was time for lunch and then a nap. When I awoke from my nap at 5pm, I felt like my abdomen was on fire.  It was a really weird sensation.  I felt like I had been put in a microwave oven or like radiation was centered on my abdomen.  Within a half hour, we

Anything wears my health down...  perhaps I should rephrase that...   Everything wears my health down, even if it is not a physical activity. It is common sense that physical activity can wear us down.  All physical activities easily wear down my health requiring days of rest to recover.  What most people do not understand, however, is that even rather sedentary interests wear my health down just as effectively.   For instance, last week I finished up producing my sailing video.  That entailed sitting at my computer editing video...   taking notes for more edits...  calculating synch times...  applying those edits...   repeating over and over, as necessary...  until the video was finished.  No physical activity nor strenuous exertion was necessary yet this rather simple, sedentary activity wore me down as though I had been at hard labor and sleep deprived for months.  A week later and I am still worn out and exhausted.   This is something that healthy people simply do not unders

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...