Another Struck from Support Group
I haven't been writing much about my own health and Systemic Mastocytosis lately other than an occasional quick update about a bad night or lousy day here and there. Sheila's health and her breast cancer has been pushed to the forefront over the past month and a half and rightfully so. Also, I've been writing more about more pleasant things such as hobbies, home renovations and the grandkids rather than my own health.
The downside of not mentioning my own health problems is that people assume that no news is good news. That line of thinking, however, is rarely correct and it is not correct this time either.
For instance, we just experienced a week of weather in the 90s with high humidity and unbelievably stagnant air. Well... to be honest, this sort of weather is like being in hell for me.
My health cannot handle climates above 80 degrees... indoors, outdoors, anywhere. So, without getting into specifics, I had a rather lousy week of poor health. It got so bad this week that I was cursing the hell-like sun and wishing for cool sunless days while avoiding the sun as though I were a vampire. I was looking forward to nighttime and the cooler air it often brings with it but, whenever nighttime arrived, I was too exhausted to stay up and accomplish something.
So, the past week has been rather lousy.
I've been struggling with this incurable illness for about 15 years now. In those early years, I was a very active advocate fighting for patients' rights and helping newly diagnosed patients who were trying to come to grips with this unknown illness and the life of disability it thrust upon them. I wrote quite a few papers in those early years and many were published. I was an active board member for a national support group. At the time, staying active in this way was quite therapeutic for me because it allowed me to have a purpose in life and kept me from dwelling on my own struggles with this illness.
In those early years, we would lose a member of our support group approximately twice a year. The group was rather small back in those days so these deaths were always a bit traumatic because we all knew each other quite well. These patients would succumb to either the illness or the treatment a few times each year.
After a few years, there came a time when I realized that I was no longer gaining any benefit from the support group and felt it was only dragging me down emotionally. So I left the group with the intention of moving on and living my life as best as possible. I felt it was time to put less focus on my illness and more focus on my life. Besides, watching patients drop around me was beginning to weigh heavily on me. It was time to distance myself from the support group and try to be a bit more selfish so I could enjoy some of my own life and I have indeed effectively done that.
Although I've always remained in contact with the support group since those early days, I have been more of a lurker in the shadows and have remained mostly quiet. I remained close to this support group in the hope that I would eventually hear of better treatment options through other patients. I knew that if I cut myself off from the support group completely, I would never hear of any advances and successes in treatment so I always remained close enough to glean useful information when necessary.
Unfortunately, no new treatment options have been what I would call successful. Many new therapies would be tried over the years but there really have been no consistent successes. The few successes we see always seem to be temporary and overshadowed by even more failures.
Today, there are more patients in this national support group than I ever imagined there would be. Even though I've stayed in close contact with this support group, learning of better treatment options hasn't happened in all these years. If anything, there are more patients struggling with this illness than ever before and there seems to be even more confusion and variation in the illness today than ever before. Worse yet, it seems that in recent years we are losing more patients than ever before. Lately it seems we lose someone from this national support group almost monthly. Even though the group is larger today than in the past, these odds are becoming quite frightening actually.
I was just notified tonight that another patient has passed from complications of this illness after suffering a significant 'mastocytosis episode' and then spending a few weeks in the hospital trying to recover. It is always terrible hearing of a fellow patient succumbing to this painful, oppressing, insidious illness but it is also a cold, stark reminder that none of us have as good a handle on our own health as we may think.
Personally, I experience and often struggle with these debilitating and life-threatening episodes at least twice a week. I have been experiencing these episodes for so long that these episodes have become my "normal" everyday life.
When this illness first struck me, these episodes landed me in emergency rooms because each episode seemed like a massive heart attack or a stroke or a combination of both. Today, experiencing these debilitating episodes is simply "normal" life and that is dangerous because, in reality, these episodes are dangerous... these episodes are life-threatening... these episodes should never be considered "normal"... yet, they are by those of us experiencing them so often.
This line of thinking and type of "new normal" is dangerous because sometimes I might not give my health the attention it needs. It is dangerous because I often will minimize the seriousness of these episodes. As a result, I'm probably playing a bit of Russian Roulette with my health far too often.
Even though my health has become "normal" to me, whenever yet another patient dies of complications due to one of these episodes like has happened tonight, I am suddenly reminded of how dangerous, serious, debilitating, and life-threatening this illness really is for us.
These deaths and losses always beg the usual questions...
Why was it him and not me?
Am I doing all I can in my treatment?
Do I have too much faith in my own team of doctors and treatment plan?
What can I do that I'm not doing now in order to stay alive longer?
But we always seem to come back to, "why was it him and not me?"
What I do know is that far too many patients in this support group are passing away in recent years and treatment plans have not improved in all the years I have been struggling with this illness. And, that is a bit unsettling and feels like a cold, hard slap in the face.
The downside of not mentioning my own health problems is that people assume that no news is good news. That line of thinking, however, is rarely correct and it is not correct this time either.
For instance, we just experienced a week of weather in the 90s with high humidity and unbelievably stagnant air. Well... to be honest, this sort of weather is like being in hell for me.
My health cannot handle climates above 80 degrees... indoors, outdoors, anywhere. So, without getting into specifics, I had a rather lousy week of poor health. It got so bad this week that I was cursing the hell-like sun and wishing for cool sunless days while avoiding the sun as though I were a vampire. I was looking forward to nighttime and the cooler air it often brings with it but, whenever nighttime arrived, I was too exhausted to stay up and accomplish something.
So, the past week has been rather lousy.
I've been struggling with this incurable illness for about 15 years now. In those early years, I was a very active advocate fighting for patients' rights and helping newly diagnosed patients who were trying to come to grips with this unknown illness and the life of disability it thrust upon them. I wrote quite a few papers in those early years and many were published. I was an active board member for a national support group. At the time, staying active in this way was quite therapeutic for me because it allowed me to have a purpose in life and kept me from dwelling on my own struggles with this illness.
In those early years, we would lose a member of our support group approximately twice a year. The group was rather small back in those days so these deaths were always a bit traumatic because we all knew each other quite well. These patients would succumb to either the illness or the treatment a few times each year.
After a few years, there came a time when I realized that I was no longer gaining any benefit from the support group and felt it was only dragging me down emotionally. So I left the group with the intention of moving on and living my life as best as possible. I felt it was time to put less focus on my illness and more focus on my life. Besides, watching patients drop around me was beginning to weigh heavily on me. It was time to distance myself from the support group and try to be a bit more selfish so I could enjoy some of my own life and I have indeed effectively done that.
Although I've always remained in contact with the support group since those early days, I have been more of a lurker in the shadows and have remained mostly quiet. I remained close to this support group in the hope that I would eventually hear of better treatment options through other patients. I knew that if I cut myself off from the support group completely, I would never hear of any advances and successes in treatment so I always remained close enough to glean useful information when necessary.
Unfortunately, no new treatment options have been what I would call successful. Many new therapies would be tried over the years but there really have been no consistent successes. The few successes we see always seem to be temporary and overshadowed by even more failures.
Today, there are more patients in this national support group than I ever imagined there would be. Even though I've stayed in close contact with this support group, learning of better treatment options hasn't happened in all these years. If anything, there are more patients struggling with this illness than ever before and there seems to be even more confusion and variation in the illness today than ever before. Worse yet, it seems that in recent years we are losing more patients than ever before. Lately it seems we lose someone from this national support group almost monthly. Even though the group is larger today than in the past, these odds are becoming quite frightening actually.
I was just notified tonight that another patient has passed from complications of this illness after suffering a significant 'mastocytosis episode' and then spending a few weeks in the hospital trying to recover. It is always terrible hearing of a fellow patient succumbing to this painful, oppressing, insidious illness but it is also a cold, stark reminder that none of us have as good a handle on our own health as we may think.
Personally, I experience and often struggle with these debilitating and life-threatening episodes at least twice a week. I have been experiencing these episodes for so long that these episodes have become my "normal" everyday life.
When this illness first struck me, these episodes landed me in emergency rooms because each episode seemed like a massive heart attack or a stroke or a combination of both. Today, experiencing these debilitating episodes is simply "normal" life and that is dangerous because, in reality, these episodes are dangerous... these episodes are life-threatening... these episodes should never be considered "normal"... yet, they are by those of us experiencing them so often.
This line of thinking and type of "new normal" is dangerous because sometimes I might not give my health the attention it needs. It is dangerous because I often will minimize the seriousness of these episodes. As a result, I'm probably playing a bit of Russian Roulette with my health far too often.
Even though my health has become "normal" to me, whenever yet another patient dies of complications due to one of these episodes like has happened tonight, I am suddenly reminded of how dangerous, serious, debilitating, and life-threatening this illness really is for us.
These deaths and losses always beg the usual questions...
Why was it him and not me?
Am I doing all I can in my treatment?
Do I have too much faith in my own team of doctors and treatment plan?
What can I do that I'm not doing now in order to stay alive longer?
But we always seem to come back to, "why was it him and not me?"
What I do know is that far too many patients in this support group are passing away in recent years and treatment plans have not improved in all the years I have been struggling with this illness. And, that is a bit unsettling and feels like a cold, hard slap in the face.
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