More Systemic Mastocytosis... Stuff
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 medications... I took a few different pills as well as epinephrine. I repeated this an hour or so later... then I took my assorted cocktail of usual nighttime meds about an hour after that.
My throat swelling subsided relatively quickly but, within a few hours, I was in the bathroom experiencing usual nausea, stomach pain, cramping and diarrhea. Fun times.
When I got up in the morning, I was still groggy from all the emergency medications but I was thinking clearly enough to evaluate what had happened the previous night.
Oddly enough... even considering the severity and dangers of a throat swelling... I rate this latest episode as only a 6 or 7 on a severity scale. Considering what I struggle with daily, this means this sort of rates as 'average' as far as debilitating symptoms go. It doesn't phase me at all since I struggle with more serious problems on far too many days.
As the day progressed, more and more pain crept into my bones and joints. This post-episode Systemic Mastocytosis pain is grueling, at best.
My shoulders are in pain which makes moving my arms something I do not want to do at all. I'm experiencing the usual bone pain in my legs... thighs and shins... even my calves ache. My entire spine is inflamed. My hips are in pain. My lower gastro-intestinal tract is inflamed and I'm experiencing some pain in my kidneys. The pain is teetering between a 6 and an 8 on the 10 point pain scale.
I find this post-episode pain to be more severe and more troubling than last night's throat swelling. The pain has not quite reached 'brutal' levels but it is grueling. Add in some post-episode fatigue and grogginess and my day easily qualifies as a day of nothingness and pain.
The thing I really wanted to drive home is the fact that it is obvious that my daily life and my daily quality of life is so lousy on a day-to-day basis that I actually consider difficulty breathing and swallowing due to my throat closing up to be 'average' or middle of the road when compared to some of my more painful and debilitating symptoms.
When my throat started closing up last night and I was having difficulty breathing and swallowing there was no visibly sudden reaction by me... no spring in my step because of an emergency... no urgency... no ER's... no calling a doctor... no anxiety... just another average day of average problems. If you are fortunate enough to be healthy, can you imagine a life so painful and debilitating due to a multitude of symptoms occurring all the time that this stuff is considered just another 'average' day?
What was really going through my head was "Ugggg... here we go again... how long will this put me down for?" "I wonder how many days I'm going to need to just sit here on the couch until I can accomplish something again?" "Ugggg... the house renovations are now on hold again." And a little later I found myself saying, "Thankfully we were not traveling when this happened... that's a good thing, I suppose."
I used to keep track of my health on a health calendar in the years of diagnosis to help the doctors figure out an accurate diagnosis. Good days were in green... mediocre days with just a few symptoms were in yellow and I would list the symptoms... bad days were in red and I would list the symptoms.
Back in those days, I would get a block of about five good days shown in green... then I would get three or so days of yellow with some mediocre symptoms listed... followed by about two weeks of days colored red with debilitating symptoms. These 'red' days were a rating of about 9 or 10 on a 10 point severity scale so 'red' meant completely debilitating, painful and affecting life-support functions.
Today, the pattern would be quite different because we have added so many specific medications and specific dosages into the mix to help me. I now rarely get those days that rate an absolutely miserable 9 or a 10 because of these fairly effective medications so that is very good. I should point out that this is an incurable illness but the myriad of medications 'can be' effective at minimizing various symptoms. The illness still continues to do its thing on a cellular level though.
Also, I've changed and I've adapted... there is a "new normal" for me. Today's "new normal" is a day of experiencing significant pain, experiencing overwhelming fatigue and I can only stay moving in spurts, and I often have difficulty breathing and get worn down exceptionally quickly... this would be a normal 'good' day.
Bad days put me down with a myriad of symptoms and can get as bad as a rating of 7 or 8 on the 10 point severity scale. A mediocre day is in the 5 to 6 range. And, a normal 'good' day (my new normal) is teetering around a 4 on this scale. I don't even remember the last time I saw a day in the 1 to 3 range on this scale! I don't even remember what it is like to feel no pain... to have energy... to physically breath easy... to emotionally breath easy... to be able to do exactly what I want, when I want, with no physical obstacles...
Fun times...
Followup: I had continued problems in the following 48 hours... Mostly, I had a relatively minor raised rash on my legs... this recurring rash is painful when I wear pants so, when it does occur, I wear shorts. I then experienced some flushing, on and off... then I started to develop itchy hives on my abdomen. I kept throwing more and more emergency medications as these symptoms developed so, in the big scheme of things, they were short lived. The pain is still an issue but is slowly diminishing.
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 medications... I took a few different pills as well as epinephrine. I repeated this an hour or so later... then I took my assorted cocktail of usual nighttime meds about an hour after that.
My throat swelling subsided relatively quickly but, within a few hours, I was in the bathroom experiencing usual nausea, stomach pain, cramping and diarrhea. Fun times.
When I got up in the morning, I was still groggy from all the emergency medications but I was thinking clearly enough to evaluate what had happened the previous night.
Oddly enough... even considering the severity and dangers of a throat swelling... I rate this latest episode as only a 6 or 7 on a severity scale. Considering what I struggle with daily, this means this sort of rates as 'average' as far as debilitating symptoms go. It doesn't phase me at all since I struggle with more serious problems on far too many days.
As the day progressed, more and more pain crept into my bones and joints. This post-episode Systemic Mastocytosis pain is grueling, at best.
My shoulders are in pain which makes moving my arms something I do not want to do at all. I'm experiencing the usual bone pain in my legs... thighs and shins... even my calves ache. My entire spine is inflamed. My hips are in pain. My lower gastro-intestinal tract is inflamed and I'm experiencing some pain in my kidneys. The pain is teetering between a 6 and an 8 on the 10 point pain scale.
I find this post-episode pain to be more severe and more troubling than last night's throat swelling. The pain has not quite reached 'brutal' levels but it is grueling. Add in some post-episode fatigue and grogginess and my day easily qualifies as a day of nothingness and pain.
The thing I really wanted to drive home is the fact that it is obvious that my daily life and my daily quality of life is so lousy on a day-to-day basis that I actually consider difficulty breathing and swallowing due to my throat closing up to be 'average' or middle of the road when compared to some of my more painful and debilitating symptoms.
When my throat started closing up last night and I was having difficulty breathing and swallowing there was no visibly sudden reaction by me... no spring in my step because of an emergency... no urgency... no ER's... no calling a doctor... no anxiety... just another average day of average problems. If you are fortunate enough to be healthy, can you imagine a life so painful and debilitating due to a multitude of symptoms occurring all the time that this stuff is considered just another 'average' day?
What was really going through my head was "Ugggg... here we go again... how long will this put me down for?" "I wonder how many days I'm going to need to just sit here on the couch until I can accomplish something again?" "Ugggg... the house renovations are now on hold again." And a little later I found myself saying, "Thankfully we were not traveling when this happened... that's a good thing, I suppose."
I used to keep track of my health on a health calendar in the years of diagnosis to help the doctors figure out an accurate diagnosis. Good days were in green... mediocre days with just a few symptoms were in yellow and I would list the symptoms... bad days were in red and I would list the symptoms.
Back in those days, I would get a block of about five good days shown in green... then I would get three or so days of yellow with some mediocre symptoms listed... followed by about two weeks of days colored red with debilitating symptoms. These 'red' days were a rating of about 9 or 10 on a 10 point severity scale so 'red' meant completely debilitating, painful and affecting life-support functions.
Today, the pattern would be quite different because we have added so many specific medications and specific dosages into the mix to help me. I now rarely get those days that rate an absolutely miserable 9 or a 10 because of these fairly effective medications so that is very good. I should point out that this is an incurable illness but the myriad of medications 'can be' effective at minimizing various symptoms. The illness still continues to do its thing on a cellular level though.
Also, I've changed and I've adapted... there is a "new normal" for me. Today's "new normal" is a day of experiencing significant pain, experiencing overwhelming fatigue and I can only stay moving in spurts, and I often have difficulty breathing and get worn down exceptionally quickly... this would be a normal 'good' day.
Bad days put me down with a myriad of symptoms and can get as bad as a rating of 7 or 8 on the 10 point severity scale. A mediocre day is in the 5 to 6 range. And, a normal 'good' day (my new normal) is teetering around a 4 on this scale. I don't even remember the last time I saw a day in the 1 to 3 range on this scale! I don't even remember what it is like to feel no pain... to have energy... to physically breath easy... to emotionally breath easy... to be able to do exactly what I want, when I want, with no physical obstacles...
Fun times...
Followup: I had continued problems in the following 48 hours... Mostly, I had a relatively minor raised rash on my legs... this recurring rash is painful when I wear pants so, when it does occur, I wear shorts. I then experienced some flushing, on and off... then I started to develop itchy hives on my abdomen. I kept throwing more and more emergency medications as these symptoms developed so, in the big scheme of things, they were short lived. The pain is still an issue but is slowly diminishing.
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