Scattered Thoughts . . .

I'm taking a break for a few days while some significant spinal pain subsides. My extensive spinal injuries (two herniated disks, four bulging disks, six compressed disks, a broken up vertebra and disk in my neck, osteophytosis, and two areas of stenosis) are inflamed and screaming. The little bit of work on the house may have caused this inflammation or it is due to some other reason.  My primary illness, Systemic Mastocytosis, is known to cause inflammation throughout my body, one area at a time, so that could cause this spinal inflammation too but I'm thinking it makes more sense that perhaps I overdid it working on the house. It has been a long time, however, since having such intense spinal pain.  I still have a little bit to write about pertaining to Sheila's new cancer finding. I have a little bit to write about pertaining to our fun cruise with the grandkids and Sheila's parents. I have a little bit to write about pertaining to the home renovations. You

The past week has been quite a week. My week was so lousy that I would have sworn that just this past week was really three weeks long! First, the grandkids started puking last Sunday... unfortunately, I had been with them on Saturday so I was probably exposed to the same bug.  By Monday, the stomach virus had hit me as well. Fortunately for the grandkids, they shook off the bug within 24 hours. Unfortunately for me, bugs like this tend to linger and negatively impact my Systemic Mastocytosis with problems that linger even longer. This bug was no exception. Some of the days over the past week were absolutely miserable... from morning to bedtime... but some of the days varied between waves of nausea and feeling like the bug was finally moving behind me. Then another wave would hit and I knew that I was only experiencing some wishful thinking.  Some days, my fatigue was actually brutal... I'd get up and immediately take my morning dose of medications... then, after my medicat

I started a rather small repair/renovation in our master bathroom about two weeks ago and my health is interfering enough to continue to put this small project on hold. As of today, this bathroom is still only partially usable... it sits in a vulnerable, unfinished state with bare wood exposed to a humid room (we are still using the shower daily) as I wait for my health to recover.  This time, the primary issue keeping me from this project is related to my extensive spinal injuries rather than my Systemic Mastocytosis. Although the past few days have been more about recovering from Systemic Mastocytosis problems, overall, my extensive spinal injuries have interfered with this project more than anything else. We've had to cancel a few other plans recently because of these issues as well. That is never fun. Everytime I need to cancel social plans because of my health, I worry that people will just stop inviting us to social events because we cancel our plans so often. This just a

My spine was feeling "fair" this morning... which, honestly, is about as good as it gets... so I decided I should attempt to finish up this bathroom toilet project.   I took a day or two off from this project because I needed some galvanized deck screws for me to screw down the subflooring as well as for screwing down the flange. Unfortunately, I couldn't find any among all my tools. Also, my spinal injuries were screaming at me for a break. When I placed the new toilet over the flange to see how it fits (between the wall and the flange) I realized that I forgot to pick up a new longer braided stainless steel supply hose. This new toilet is an ADA toilet so it sits a bit higher than the old toilet...  that means a slightly longer run to the tank from our toilet supply shutoff... so I needed to purchase a 16" or 20" supply hose. On Monday night, we first went to a local hardware store to pick up these rather standard building materials... that was a complete

I awoke feeling much less energetic than on an average day. Shortly after getting out of bed I realized that I probably would not get much done on the toilet project today since I was already feeling rather lousy and I wasn't thinking clearly. My spine was still hurting enough to make sleeping difficult which also made it difficult getting up out of bed. These weren't good signs for having a productive day with a home repair project. When I made my way out of the bedroom, I had looked out the window to see how this forecasted "storm" is progressing because I knew that if it was as bad as the forecast insisted, then I would need to spend my time and energy outside clearing off the roof of heavy snow. When I looked out the window I saw only two or three inches... for us, this is pretty much an every-morning dusting. I shook my head at this lame "storm" and continued on my way.  While I was taking my morning slew of medications, I decided it would be wiser

The few months after Christmas are always rough months for my health so I always expect health issues after the ramp-up to Christmas. This year is no different except that my energy levels seem to be at an all-time low too. Leading up to Christmas and through Christmas, I pound extra medications... adrenaline is flowing... and, I'm careful about my diet and managing energy. Once Christmas Day has passed, I'm exhausted... I mean completely spent... I mean overwhelmingly fatigued... I mean that just taking a shower oftentimes will use up whatever energy I had to use for that particular day. All this fatigue is accompanied by bone and joint pain. The joint pain is easy to describe... it feels like an ice pick being stabbed into the joint... my ankles hurt, my knees hurt, my hips hurt, my spine hurts, my shoulders hurt, my elbows hurt, my wrists hurt, my fingers hurt. If I attempt to hold anything... ie, a plate while attempting to wash a few dishes... the pain in my fingers, w

Oh boy was yesterday a lousy day!  Earlier in the morning, I was feeling quite well. I was looking forward to some exercise and my daily physical therapy. I never got that far though... First, around lunchtime, I began to feel something wasn't right. I couldn't put my finger on the problem but I knew some lousy health to some degree was approaching. I ate lunch and then it started... As I was trying to walk my dishes to the sink, my legs would not cooperate. At first, I wondered if they had just started to fall asleep... and hoped it wasn't a mastocytosis issue... or, was this a result of my spinal injuries? My legs not cooperating to such a debilitating level was a bad sign though... my legs really were not cooperating at all...  I could barely move them. I made my way back to the couch. My bones and joints had been hurting since around Christmastime so that was nothing new and they were still hurting but the hurt was pushed to the background as some new symptoms e

This past week has been rather lousy, overall, but this weekend has been thrust down to "brutal" levels.   We (mostly I) had hoped to get to the lake house yesterday to walk the frozen lake but my health was an obstacle nor was the weather cooperating... it was quite frigid yesterday! We abandoned that plan and ran some much needed errands instead. I don't get out of the house much...  the last time I was out and about was probably before Christmas sometime so I was itching to get out someplace where I could walk. Because of the aforementioned obstacles in heading to the lake house, we opted to head to the Burlington area to do some much needed shopping.  While in Burlington, we went into 'Homeport' specifically to find an oven thermometer and we instead found a couch that we both liked the moment we saw it. We did walk out with an oven thermometer but we also had info about the couch and contact info for the salesperson who was more than helpful with all of

We awoke this morning to a light, but crunchy, layer of snow covering everything. Our Christmassy weather has finally begun! Sheila and I are both feeling pretty good this morning so, in the spirit of our newfound Christmassy weather, we might take the grandkids out Christmas shopping this afternoon to see where their interests lie at age 4. This will give us a better idea of what to get them for Christmas this year (in addition to the usual staples of trains and dolls... which we've already purchased for this Christmas).  After shopping, we'll come home and I'll make a nice meatloaf dinner for Liza and the kids. Sheila hasn't eaten at all in a few days so hopefully she'll find something she can tolerate today because her stomach is grumbling for some food! I'm hoping for a really nice and pain-free day today...   EDIT:  We've been to Toys 'r Us with the kids this afternoon...  followed by some New York style pizza in South Burlington. Th

Late last night, my spine suddenly was on fire... I had difficulty getting up out of my chair... I had difficulty sleeping... rolling over was excruciating. Today is even worse. The pain has been absolutely brutal.  The pain is a searing, burning pain in the lower half of my spine... radiating to my hips, around my kidneys and through my groin... whenever I try to put any weight on my legs, my legs experience tremors and the pain instantly jumps to a big fat 10 on the 10 point pain scale.  There are times when I almost ended up on the floor because I could not stand on my feet without actually seeing stars due to the intense pain. Reaching out for the couch, the bed, a chair and the kitchen table helped me keep from being a heap on the floor. This has been an exceptionally bad day. Most times, despite my extensive spinal injuries, I get around just fine (with pain, but I get around just fine) but there are times when my spinal injuries are excruciatingly painful. During these pai

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

Plain and simple, this past week has been brutal. Whenever we have a busy weekend of activities, it affects my health for the next week... or month. Last weekend was exceptionally busy from Friday through Sunday. We had squeezed in about three activities and three different places each day... I skipped my daily two hour naps... I was on my feet throughout most of the weekend... and we were on the go all the time. This is a recipe for a long bout of miserable health in my foreseeable future. In preparation of the long, busy weekend, I rested up in the days leading up to the weekend (longer naps each day and did virtually nothing each day in an effort to preserve energy). I also squeezed in more medications in the days leading up to the weekend as well as all through the three day weekend. I can get away with this particular plan of attack if I don't do it too often. It allows for fairly decent health for a few days but there is a price to pay... the price is exceptionally

This has been a very looonnnnnnggggggg week. I feel as though two weeks have passed in the span of this past week! My health has been quite lousy all week but last night it turned to a rather brutal and painful stage. Of course, pain is always present, even on relatively good days, but there are far too many periods of worsened pain. This is one of those times.  Whenever my mast cells pick some area of my body to "attack" due to Systemic Mastocytosis, they degranulate and release many mediators. These mediators cause all sorts of problems in varying combinations... anaphylaxis, hindering effective bodily function, breathing difficulty, nausea, lightheadedness, dizziness, difficulty with neurological systems, skin rashes, flushing, hives, itching, etc... and some of these mediators cause nerves to inflame and become very irritated which causes even more pain at a brutal level. So, each time I have a mass degranulation of mast cells as they indiscriminately attack a particu

I've had Systemic Mastocytosis episodes ranging in severity from 1 to 10 over the past decade and a half. Some episodes are worse than others but they are all quite debilitating.  Some episodes last for weeks, some for days, and, on the rare occasion, only hours. The symptoms of these episodes are varied but always include physically, mentally and emotionally debilitating symptoms, a lot of pain, and even life threatening symptoms. Last night, however, I experienced a type of episode which was new for me. Many other patients experience this type of episode often but it was a first for me. I don't think this means much since each patient presents this illness differently. Last night, my breathing became difficult rather suddenly and then I quickly noticed that swallowing was difficult. I definitely knew this was not a good thing! Within about a minute, I realized that my throat was swelling and closing.  I quickly grabbed my bag of medications as well as my emergency medic

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