Scattered Thoughts . . .

It has been warm the past two days and today is looking to be a beautiful, sunny, warm spring day too.  I had planned to utilize the good weather to start working on things outside where sawdust is not an issue.  This week is looking good for that and I have a bunch of small projects that need to be accomplished.  Actually, I've been waiting months to be able to pull out woodworking tools to accomplish a few things. Unfortunately, once again, my health is being a bit uncooperative.   My ankle is still healing.  Sheila and I wandered outside yesterday to take down wreaths and Christmas lights.  I stepped up on the first step of a stepladder and quickly realized my ankle was still in no condition for climbing a short stepladder.  I instantly fell off and onto unlevel snow on the ground.  This hurt both of my ankles again setting me back a couple of days.  I have no need for my cane now but getting around is still a bit painful and slow-going.  I'm taking small steps and taking th

I often write about and harp upon the need for understanding when it comes to people struggling with chronic illness and/or life threatening illnesses. Tonight it is time for me to harp on this yet again because Sheila is hurt and I am subsequently angry and rapidly losing my patience with far too many people who don't seem to "understand". As a result of this lack of understanding, I am truly at my wits' end and we are exceptionally close to again shrinking our circle of family and friends if this very tiring behavior does not change. I, myself, have a long list of health issues and struggle with significant disabilities every day. The major difference today, however, is that I am referring to and coming to the defense of Sheila since she is very upset right now and has been very upset at the last two family events because of this rather callous behavior. It has gotten to the point where Sheila actually dreads attending any family events because so many people na

We chose the correct day of this holiday weekend to head up to Shelburne Farms... that is for sure! Yesterday was a sunny and warm day but there was a nice breeze to keep the temperatures tolerable. Today, however, was brutal. At 9am this morning, we got into the car to head to the supermarket to pick up some bagels and donuts... it was already so hot outside that the inside of the car was dangerously hot which triggered an anaphylaxic response from my body before we even pulled out of the driveway. The weather only worsened as the day progressed. By 2:30pm (the last time I checked the thermometer), it was 96 degrees. Worse yet, our trip into town this morning was wasted since there were no bagels left... as usual.   I haven't been able to breath today... I have absolutely zero energy... it is simply a brutal day as I struggle with the typical and debilitating symptoms of Systemic Mastocytosis. Fortunately, we had chosen yesterday for our visit to Shelburne Farms. Today defin

I honestly don't know how often I write about it, but it is time to write about it again even if I have written about it often.  Fatigue is something I struggle with every day, all day. The past week or so has been pretty lousy when it comes to the energy vs fatigue struggle so I thought it would be a good time to write about it. "Overwhelming fatigue" is a much more accurate term than simply saying "fatigue". Telling my doctors that I am "fatigued" doesn't even come close to describing this debilitating symptom. Just saying "fatigue" sounds silly... childish... minuscule... not worth mentioning... it seems like something a nap will cure. Even calling it "overwhelming fatigue" doesn't seem to cut it either but it is the best term I know. I've had mononucleosis three times in my life (thus far) and I have always said I would never wish that fatigue on anyone... not even on my worst enemy. This overwhelming fatigue th

The first of seven shots... deer in headlights look... I'm really not much of a 'cat' person but, for the past few years, I've had one of our neighbor's cats follow me around like my shadow.  This cat is definitely not one of the more friendly cats in the neighborhood but whenever my health fails, this feline is right there peering in the window at me... for hours... It doesn't matter which room I am in, this cat will be there right outside that particular room at the nearest window peering in at me.  Whenever I do some work outdoors, this cat follows me around and, at times, has been known to leave me little gifts at my car door (mice).   Adam tried many times to get a photo of our resident shadow but never really had much luck. Today, as I was playing around with my oldest remaining digital camera (Edit:  I checked camera release dates and it turns out that I do have a digital camera much older than this one which happens to be one of my all-time fav

A Mastocyctosis Angel, created by a fellow patient and gifted to me... a symbol of compassion and energy. Gift of Extra Spoon Since many of you reading this blog are actually personal friends with me already, you know that I've been extremely busy for the past two months with family events. Whenever I get busy in any aspect of my life, all other areas of my life must be put on hold. I simply do not have the energy nor health to focus on more than one thing at a time. Every now and then, I get newly diagnosed patients asking for my help, advice and guidance. Just this past month, I received a number of requests for such help but I have been silent in my responses and feel I should try to explain my situation.   If I get involved in helping newly diagnosed patients, nothing else in my life gets done. There is no additional energy for anything beyond what I must focus on at any given time. Systemic Mastocytosis literally sucks the life right out of those of us struggling with

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

Plumbing for the washing machine and pedestal sink... Overall, things have been very quiet in the house for the past month as my health recovers from a painful dip which, at this point, has sapped most of my energy. I'm getting a bit bored and antsy laying around doing nothing but my energy level is still so low that it is impossible to accomplish a thing. On top of that, I spent a good portion of last night in the bathroom, sick, rather than sleeping... those are always fun times! (sarcasm) There have, however, been a few mornings during the past month when I felt that I had enough energy for an hour or so of work. On these few days I did manage to get a little bit accomplished on our bathroom project.   I needed to get a bit creative with all the plumbing to make it fit in this small space. In this first photo, at right, you can see some odd 45 degree angles to help make things fit. There was absolutely no room for sweeping elbows!  The waste line running up on the ri

I've been actively working on building and installing a new half bath in our house over the past couple of weeks. "Actively working", considering my health, means working on it only on relatively good health days for a few hours each morning. To say this is a slow moving project is an accurate statement. One of the problems with only working on a project of this sort a few hours at a time is that I spend far too much time setting up, cleaning up and searching for tools I put away a night or a few nights earlier. Unfortunately, I don't have the energy to do anything longer than a few hours in a day so I do what I can when I am feeling capable. My health is kind of lousy today and tonight so I am spending a little time on the computer and thought I should share about a problem I had with this bathroom project over the past few days... The new drill and hole saw necessary for this small half bathroom installation. The latest frustrating problems arose while w

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

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

Overall, since Christmas, my health has been quite lousy to put it mildly. I used up too many "spoons" in the month of December leading up to Christmas. (For those who don't know, a "spoon" is a unit of energy... see  Gift of an Extra Spoon .) As a result of using far too many spoons in December, I am still trying to recover in February. Unfortunately, the end of this recovery period is nowhere in sight at the moment.  I am so exhausted and experiencing such consistently poor health that I'm having great difficulty even thinking clearly. Just writing this short blog entry is taking about four hours of frustrating work. My thoughts jump from topic to topic in just a few short seconds... yes, a few short  seconds.   I am having great difficulty trying to accurately explain... uggg... about five minutes have passed while I struggled to finish that sentence. I suppose that might explain my difficulties fairly accurately. I don't know whether to scream or

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