Scattered Thoughts . . .

Whenever I 'overdo' it, my health crashes into poor or miserable levels quite often delving into dangerous waters that causes a further deterioration of health which includes anaphylaxis. I've had some transient health issues on and off throughout the Christmas season but not anything classifying as 'dangerous'... until now.  Shortly after going to bed last night, my health crashed causing sudden anaphylaxis. My body responded to the drop in blood pressure as it should causing flushing and sudden palpitations. I was already in bed, however... already completely spent... now struggling with bigger issues... and, unfortunately, I never made it to my emergency medications.   I remember the sudden drop in energy levels... I remember instantly having difficulty keeping my eyes open... I had thought I was simply tired. In hindsight, I think these were signs of impending anaphylaxis. About an hour or two later, while still struggling with keeping my eyes open, I rememb

A week ago, I had written about having screwed up my prescription refills. One of my medications... one which is a mast cell stabilizer and an H1 blocker...  and one which is not yet FDA-approved... had fallen through the cracks of my record-keeping and memory which means I forgot to order a refill before I had run out of this medication.  For most prescriptions, people can just run to the local pharmacy to pick up a last minute prescription. I actually do this with any acute problems I am having. I bite the bullet (taking a serious hit in cost) and I buy the prescription locally so that I can start on the medication immediately.  Unfortunately, most of my medications are absurdly expensive and going to our local retail pharmacy is not financially possible for me. For instance, one of my medications, by itself, costs upwards of $40,000 annually. If I bought this medication locally rather than through my insurance plan's mail order program there would be two problems... 1. The c

We had a busy weekend again with the grandchildren. It is always nice to have them around but this weekend my health did not cooperate. I screwed up a dose of medications on Saturday... and, other than a 15 minute snooze in the car on the way back from Burlington, I missed my usual 2 hour daily nap... and now my health is paying for these problems. I could barely keep my eyes open on Sunday (yesterday). I felt as though I had been heavily drugged and was fighting losing consciousness. I finally had a chance to lay on the couch in the afternoon to try to get some much needed rest. I slept for about two hours but I had a very difficult time waking myself up enough to even get up off the couch. I would try to awaken but my eyes wouldn't stay open and I would fall asleep again... and then again... and again.  As I was lying there, fighting falling asleep yet again, I was wondering if I might have experienced anaphylaxis in my sleep again.  The post anaphylaxis symptoms are very o

Last night was... brutal.  The lousy health started to hit me while I was cooking dinner... country fried steak, pan roasted potatoes, country gravy and a big pan of fried okra. With four burners on the stove going at once, it was far too hot for me.  Heat is a major trigger for me. Warmer environments for anything longer than a few minutes will trigger my Systemic Mastocytosis episodes. These episodes can simply be painfully debilitating with only a few symptoms and/or they can include life threatening symptoms such as anaphylaxis. After cooking dinner, I couldn't even eat... I was nauseated beyond belief... and, generally, felt quite lousy. I knew my body was crashing but, apparently, I was not thinking clearly which is another symptom... diminished cognitive reasoning. I should have taken some emergency medications at this point but didn't think of it at the time. By the time we finished dinner, my nausea was still constant but I was experiencing worsening waves of n

Today was one of those rather lousy days. It wasn't "miserable" nor "grueling" but it was quite lousy. Systemic Mastocytosis causes all sort of transient symptoms, problems, difficulties and obstacles. One day can be vastly different from another. One moment can be vastly different from the next! Today, however, was fairly consistent... quite lousy. This all started late last night with some flushing. Sheila had noticed a splotchy, deep red rash on my face and neck. I felt "okay" at the time so I just let this first sign of impending trouble just slip by with no countermeasures. By the time I laid down in bed last night, I was experiencing palpitations and mild tachycardia (120-130 bpm). This is a sign that my blood pressure was dropping too low... my body would respond naturally by jumping into overdrive to counter the loss in blood pressure (which is a very good thing)... then my blood pressure would drop again... body would respond.... etc. Co

We had the kids over yesterday for playing with dolls, playing trains, watching some movies and a nice pot roast dinner. It was a nice day, as always, but my health didn't cooperate whatsoever. Aside from all my usual medications, I needed to throw a lot of extra emergency medications at my health after having a serious bout of poor health leading to impending anaphylaxis. My breathing has been rather miserable over the past few days anyway... "miserable" compared to the usual "lousy"... but then I started feeling nauseated. At this point... the point when the second symptom appeared... I should have taken some epinephrine and some extra emergency medications. I wasn't thinking clearly so I didn't. (I haven't been thinking too clearly lately either which is another common symptom of this illness... brain fog clouding my cognitive reasoning.) Eventually, my health worsened significantly into difficulty with nausea, narrowing vision, lightheadedn

I had an appointment with my doctor again this morning. I had planned to go to this appointment alone (Sheila and I usually attend appointments together but this appointment seemed like it would be uneventful... ie, no life threatening decisions to be made or discussed... so I was going it alone today) but my car is frozen in the mud so Sheila had to leave work to drive me there. Other than giving up some blood, the appointment was rather painless. Sheila and I saw the same doctor last week for Sheila's lingering cold. While we were there for Sheila, my doctor said she wanted to see me for a full exam and to adjust my medications. That appointment was this morning. This appointment was not a moment too soon since my health has been rather miserable lately. I've been having significantly worsened breathing issues since June of 2015... which is a long time and something which should have sent me to the doctor long ago. That was a priority today because it seems to be worseni

I've had some fairly stable health for the past week or two. It is always nice when this happens and especially so when it is Christmastime. Today, however, my health hit its limit... This evening, I awoke on the couch... laptop in my lap... still opened, still running, and still showing the model railroading page I was viewing... I was freezing... a bit groggier than usual after a nap...  a nap? "Wait a minute... I didn't lay down for a nap yet!" I looked at the clock... it was showing 4:30pm...  last thing I remembered, it was about 2pm and I was researching some model railroading stuff on the laptop... laptop balancing on my legs... I "awoke" in the same exact position with the computer still sitting on my lap.  What is unusual about this is that because of my spinal issues, I never stay in the same position for more than ten or fifteen minutes because the pain is too uncomfortable. I'm constantly changing positions and rolling over whenever I

I've been too busy and not resting enough lately. Just as significant is the fact that I'm eating things which are known to add to my Systemic Mastocytosis problems. Avoiding these "bad" foods can be tough sometimes. There is little choice when we eat out... there is little choice when we have dinner at someone else's home... and leftovers are always bad for me.  Cooking fresh food for every single meal is difficult... and extremely expensive for those of us living in this neck of the woods. Needless to say, we always resort to eating leftovers because of financial concerns. Another problem I routinely struggle with is staying well rested and avoiding overdoing it! This time of year is tough for this one. Not taxing my body at all is tough to do through the holidays. Finding time for my everyday naps is difficult... even when I do lay down to try to nap. Something always keeps me up or awakens me far too early. This may be my biggest struggle through the hol

My health always seems to be teetering on disaster.  I actually had a "relatively good" day on Sunday...  possibly the best day of health I've had in the past four months of consistently lousy health... contrasting that "good" health on Sunday, all of that quickly changed today. The crazy thing is that I think my health has crashed today not because of something completely out of my control but because I had to spread out today's four doses of medications over a significant longer period of time and, frankly,... I did not manage my medications effectively. Typically, my first dose of a cocktail of medications for Systemic Mastocytosis each day is at around 8am before breakfast.... then noon before lunch... then 4pm before dinner...  and then around 9pm before bed (I always must take these medications on an empty stomach). So, as you can see from this normal schedule, I only spread out my medications up to about five hours apart. History has proven that

We had a very nice day the other day... sunny and in the low 80's... but I still wasn't feeling well enough to get anything accomplished on the house. It was a perfect day for mowing the lawn and getting some landscaping chores accomplished but I was not well enough for that either. Sheila and I briefly discussed my overall health just this morning. I was telling her how I am feeling a bit like a prisoner in my own home after having such a long bout with consistently poor health. Since returning from the lake three months ago, the only times I have wandered away from our tiny home have been to pick up dinner at the grocery store in town, our trek to Shelburne Farms with the kids last weekend, and a couple of visits to Arvad's for a meal when I was feeling too miserable to even prepare a meal. This has left me feeling a bit anxious, bored and in need of a change in scenery.  We both agreed that we are due for a change in scenery. The weather is finally cooling down so my

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

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

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

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