Scattered Thoughts . . .

Wow...  it was impossible to get comfortable enough to sleep last night.  My spinal injuries were painfully and debilitatingly inflamed after all of yesterday's yardwork.  I'd say the pain was in the 8-10 range on the 10 point pain scale.  At times, the good times, the pain was only an 8.  Other times, like when I try to move, the pain was pegged at around 10 and would buckle me at the knees.   Sleeping was difficult, at best.  For a long while, I simply couldn't sleep.  I eventually found a position or two that allowed a few minutes of sleep before I would need to change positions to the other position.  This wasn't until the wee hours of the morning though.  I actually thought about just getting up out of bed around this time.  It was around 5am and, typically, I would have no problem with that.  This time, however, I was thinking that if I'm finding bed extremely painful, then the couch wouldn't be any better.  Act...

T he weather has been horrendous anyway but my health has really slowed down any sort of chance of being productive over the past week and a half or so.  I think the rainy, damp, wet weather may be playing into the amount of pain I'm in all day long so I suppose it does have some bearing on my health.   My main issue is pain...  joint pain, bone pain, spinal pain.  My sprained left ankle (since January) has worsened in this damp weather so I'm limping a bit due to that.  My right knee is still a problem even though it is better than it was a month ago.  The pain in these two joints alone is enough to keep me up through the night.  I also have nagging, relentless bone pain.  My extensive spinal injuries are always worse in periods of damp, wet weather too so my spinal pain has been worse lately as well.   The pain wears me down and causes sleep issues so then there is overwhelming fatigue added into the mix as well.  I just want...

I've been feeling rather lousy for the past week or more so it was not much of a surprise when I quickly realized this morning that today wasn't going to be much better.  For the most part, I've been extremely fatigued and inexplicably weak over the past week.  My usual bone, joint and spinal pain has been far worse as well.  I have pain all day every day but far too often this pain dips into severely debilitating levels.  This is where my health has been lately.   I've also been feeling "not right".  Sometimes I just can't put my finger on what is wrong.  All I know is I don't feel right.  I think this is usually due to multiple symptoms spiraling down into the debilitating levels but no single symptom seems to stand out.  Regardless of why I feel this way, I have been feeling this way lately.  Late this morning, I began having some difficulty breathing.  No red flags were waving in my head though because this is a common occu...

I've really been neglecting this blog in recent months.  Between lousy health for the past year and us staying inside our home every day for the past year, there really hasn't been much to write about during this period.   I last wrote about inflammation of my spine due to having to stop my anti-inflammatory medication.  (I was having some internal bleeding.)  The resulting inflammation in my spine and joints is now about as bad as it can get.  It is interrupting my sleep and making it difficult to just get around the house.   The other night, I sort of turned my left ankle.  I say 'sort of' because, as I was sitting at my desk, I was resting my right foot on top of my left foot while the top of my left foot was positioned so it can rest on the floor under the weight of my right foot.  About an hour into sitting this way, I realized that my left ankle would probably get inflamed so I stopped sitting that way.  In case you were wonde...

I slept for a total of three and a half hours the other night...  I was having a dream about doing electrical work on some house but I wasn't having much success...  wires were exposed and lighting fixtures were hanging from ceilings...  nothing seemed to be working correctly...  then I started having great difficulty breathing in the dream.  I was calling out for help but it seemed as though nobody really cared that I couldn't breath and were even acting as though I wasn't even there...  maybe I was stuck in some other dimension...  at this point, I awoke and realized that I was indeed having great difficulty breathing.   I then grabbed my inhaler...  two puffs...  no improvement.  There is nothing new with that...  my inhaler rarely helps more than just slightly.  I took two more puffs about five minutes later and I finally was able to get a halfway decent breath of air after another few minutes of waiting for some ...

It was a beautiful day today so I got up and was ready to jump into getting some things accomplished outdoors.  I have a few different projects in progress around the house so there was plenty of work to choose from this morning.   I started searching for and collecting tools.  Before I even made it outdoors, my spine was screaming at me and I was walking around bent over like an elderly man in pain.  As if that wasn't enough, my recent head injury was throbbing again too.  I decided to call it a day before I even had breakfast. I ended up sleeping away most of the day and doing some sketching and reading on the couch.   I hear the weather is supposed to be lousy again for the next few days so I doubt much will get done for much of the rest of the week.  That should give my spine and head enough time to recover though.

My health has been quite lousy since January. Sheila and I seem to be passing a cold and a stomach bug back and forth between us, over and over. These types of 'common colds' always send my mast cells into a hyperactive tailspin so I'm having great difficulty focusing on anything because my thought processes are a muddled mess! I have a dozen different projects bouncing around in my head all at once. Most of these projects I actually want to accomplish... some I  need to accomplish as soon as I am feeling well enough... and all of these projects are occupying my thoughts at any given moment. If I'm not struggling with nausea and spending time in the bathroom, I'm struggling with pain and overwhelming fatigue. Sheila hasn't been much better lately. I feel as though I am spending all my time in bed, sleeping away the winter as projects keep backing up and my to-do list gets longer and longer. My spinal injuries are terribly inflamed. I assume much of t...

Sheila, talking with one of our newest train show fanatics... He went home with a new train set and a few other toys. Sheila and I had a great time at our annual train show extended weekend. It sounds as though everyone who joined us had a great time as well!  My spinal injuries were putting a painful crimp in our time at the show but, overall, we had a great time and are glad we ventured to the show regardless of my spinal injuries. I couldn't walk at all in the days before we left for the show so it was a bit iffy whether I would make it to the show at all. We still probably would have traveled down to see everyone but being able to walk around the show didn't look promising in the preceding days. After having problems getting around the show on my own this year... as well as some problems last year which weren't as bad as this year... and even some problems the year before that were milder (I see the pattern and it isn't a pretty pattern)... I have de...

The pain from my spinal injuries is pretty damn close to the worst it has ever been in the past 20 years.  Back a few months ago, I was shopping around for wheelchairs because I had a feeling I'd need one for our upcoming extended weekend in Springfield as well as any other event that requires a lot of standing and walking. I quickly came to the conclusion that I might be jumping the gun on this purchase. After all, at this point, the train show was months away and I've always managed until now by taking a lot of breaks... why would I think I would be having more or worsening spinal problems in the coming months?  I was wrong... Getting around is difficult, slow and extremely painful..  sleeping is damn near impossible... my hips feel as though I have a nail driven into each hip... my torso, front and back, feels like it is on fire, inside and out... my spine is red hot inflamed... and the nerves throughout my entire back are tingling... I also get shooting pains do...

I wrote previously about this past week being pretty lousy and brutal. Then, I added a quick update earlier this afternoon (maybe only an hour ago) claiming my health had improved slightly into the "mediocre" category. Suddenly, and unfortunately, things are pretty damn brutal again. I was moving something far too heavy (sarcasm...  it was really a small package of toilet paper) to under the bathroom vanity and was suddenly slammed with intense spinal pain that instantly put me on the floor of the bathroom. I was just a heap of tangled, inflamed nerves stuck on the floor... and I couldn't get up!  As I laid there, contemplating whether to call out to Sheila for help, I eventually caught my breath and managed to get up and make my way to the living room where Sheila instantly noticed something was not right.  Now, my weekend has suddenly moved into the brutal stage... again... as I lay here on the couch icing my spine. 

I've been in significant pain since Saturday. I can't seem to find any position for relief either. Sitting hurts, standing hurts, laying down hurts... anti-inflammatory medications don't seem to do anything... icing it seems to be more of a bother than a benefit. I can't sleep. At rest, the pain is in the 7-8 range on the 10 point pain scale... which is quite brutal and relentless. This latest problem is with my lumbar spine... it feels as though someone pounded a railroad spike into my spine. The pain radiates through my pelvis on the left side... into my left hip... down through my groin and down my thigh to my knee. I get occasional twinges of intense pain in my left foot too whenever I move or turn the wrong way. This pain has been recurring since my first line-of-duty spinal injury almost 20 years ago.  Whenever my spinal pain gets bad, it brings back a lot of bad memories related to the time period of when I first injured my spine. These events replay in my ...

My health is on a roll again... absolutely miserable, poor, lousy, and exceptionally painful health which has been far too consistent lately. I couldn't sleep again last night... I have a million things I must get done and I can't do any of them right now.  Funny...  I had thought I was already in a lousy mood yesterday... compared to my mood today, my mood yesterday was quite pleasant.  It will be another long, brutal day today.  Maybe I'll look for some other photos from that 2013 trip to Manhattan...

What a crappy, lousy, miserable day due to intense spinal pain, inflammation, bone pain and some resulting Systemic Mastocytosis issues... that is about all I can say.

Although the weather is beautiful today for working outdoors, I am in 'recovery mode'. My spinal pain, at rest, is in the 7-8 range on the 10 point pain scale.  Yesterday, I dug and installed footings for the roof covering our grill/outdoor kitchen area. Then, I jacked up the adjoining playhouse to raise it four inches to match the roofline I need for this new roof over the grill/outdoor kitchen area. This work proved to be far too much for my spinal injuries.  Anything I do adds inflammation to my spinal injuries but I've been doing a lot of things lately which require a lot of bending over and that is never good for my spine. I don't think I slept more than a total of one hour last night! My spine was so inflamed that it was excruciating just lying in bed. I spent the night very carefully and very slowly tossing and turning trying to get comfortable enough to sleep. It didn't work. I simply could not sleep. So, today is a down day for my health.  As I s...

Whenever friends and family see me, they invariably ask the standard question, "How are you?" More often than not, I respond with an "Okay..." and a bob of the head.  The real answer, however, is that I am never okay by a healthy person's standards. The truth is, "okay" to me simply means that I am well enough to be out and about with only a moderate amount of pain. It means I am well enough to be standing upright and talking. It means my health is currently stable enough that I am not needing to stay within ten feet of an available bathroom because I'm going to be sick at any moment. It means I prepared to be out and about by taking extra medications and foregoing all other activities so I would have the energy to be out and about at this moment in time. This is "okay" to me. "Okay" for me means I can attempt to accomplish some household chores which will always result in me being "less than okay".  "Okay...

Last week, for the most part, I experienced a lot of lousy health which interfered with getting anything accomplished on the house. We're pretty antsy to get this other bedroom finished but my health is making that seem like an insurmountable task. I don't even remember what the health problems were last week... some combination of typical Systemic Mastocytosis symptoms... but I spent most of the week sleeping. I felt halfway decent on Saturday but only managed to accomplish about an hour of work before the overwhelming fatigue took over and rendered me useless.  On Sunday, I felt great! It was Sheila's last day of a usual short weekend and it was Mother's Day too so I decided to use my new energy by spending time with Sheila rather than working on the house. I figured I could put this time aside for Sheila and then work on the house the following day.... Wrong again. My health crashed again. At some point this week, I did manage to squeeze in an hour or two of ...

I had a productive Sunday... The weather was beautiful and I was feeling fairly well. As I've mentioned many times before, the weather and my health must cooperate in order to have a productive day. Today, they cooperated so it was a productive day. The down side is that my spine is in miserable condition after working on this project today. I'm in constant pain... at about a seven on the ten point pain scale while at rest... but spiking to a nine or ten whenever I attempt to walk. The pain is so bad it stops me dead in my tracks and drops me to my knees, doubled over. There is no doubt that my spine is intensely inflamed but I hope I can quickly find a way to diminish this brutal pain. (While I was cleaning up and putting tools away that were scattered across the backyard, I resorted to using one of my long cabinet clamps as a cane because I definitely needed help standing on my own two feet.) Putting my health aside, I managed to build and install three shelving cabinet...

Sheila and I came back home from the Amherst Railway Society's train show with a cold. I always need some time to recover after any trip because of my spinal injuries and mostly due to my illness... Systemic Mastocytosis. Needing some time to recover is no surprise but having a cold on top of my usual need for recovery only compounds the problem. That being said, compared to my usual recoveries after trips, this cold so far has been rather 'mild' for me. Sheila is feeling well enough to be back at work today but my cold is still lingering... clogged head, runny nose, and painful swollen lymph nodes. Of course, whenever I run down my health since procuring this insidious illness, I experience these symptoms to some extent.... some times worse than others. Since Sheila has this cold at the same time that I'm experiencing these symptoms, I'm assuming that I'm also fighting off this bug in addition to trying to recover after wearing down my health.   My spinal i...

...consequences in the form of exhaustion, bone pain, joint pain and spinal pain. Slowly, but surely, I seem to get things accomplished around the house since developing Systemic Mastocytosis but it is difficult for me and exhausting.. This illness wears me down all the time which requires a lot of extra rest and sleep. I do, however, manage to accomplish little things on my relatively good days. The frustrating thing is that after a period of lousy health, I end up with a long list of basic things which need to be accomplished such as laundry, straightening up the house, cutting the lawn...  all of which are enough to wear me out for a few days. So, when I find myself in this hole, it is extremely difficult to get out which can become exceedingly frustrating. I'm left feeling as though I am just desperately treading water and accomplishing nothing. That being said, this weekend was one of those relatively good times when I had health well enough to make some headway on some ...

A little graphic I put together to depict most of today's pain. Even though I have broken up my small stone pathway project into many small tasks, these smaller tasks were clearly still far too much for my injured spine. There is no doubt in my mind nor should there be any doubt in anyone's mind after reading my blog that once you seriously injure your spine, your spine will always be a significantly weak point of your body... enduring re-injury after re-injury.  The latest cause of this re-injury was due to overdoing it while trying to install a small stone pathway in our yard. Everything I attempt to do has a price... no matter how small and insignificant the project or activity. In this particular segmented project, I would move about six or eight stones out of the way... shovel out the exposed lawn... put the lawn in a wheelbarrow... move the stones back into place... then dump the wheelbarrow full of grass. Then I would move to the next small section.  Clearly, ...