Prolonged Intense Pain and Selling One's Soul for Relief
Today I awoke feeling so miserable and in so much pain that I needed to call my doctor to ask if I should make an appointment or just go directly to the emergency room. You know when you are already thinking of an emergency room visit before you even call your doctor, the pain is bad!
Since Monday morning, I have been awaking every morning with intense pain in the area of my kidneys. This pain has been so bad at times that I can barely walk across a room. The odd thing is that the pain has mostly been when I awake in the morning and then wanes throughout the morning.
This problem, however, seems to be a relatively common problem for those of us suffering from the more aggressive form of Systemic Mastocytosis. The mast cells erroneously attack an internal organ, for instance the kidneys, and that causes irritated and inflamed nerve endings on and around my kidneys. But, before we assume this the cause, we must rule out everything else.
For Systemic Mastocytosis patients, there are always medical conditions that complicate this process of diagnosing new issues. For me, some of those complications are my recently found gallstones... a partially damaged liver from an illness 30 years ago... and extensive spinal injuries from two line-of-duty injuries. The process of diagnosing anything new can be long and complicated.
As bad as this week has been, this week did have a highlight worth mentioning. I awoke yesterday feeling good... almost normal... well, at least my 'new normal' as associated with my overall health. My good friend, Perry, happened to be in town and was available to visit. We have not seen him, nor his family, since Perry retired last summer and they moved to Virginia. Because I was feeling well yesterday morning, Perry visited me at home and we talked all morning. It was nice to have a few hours to catch up. After saying goodbye to Perry, again (this is the one thing I do not miss from my old career... it seems saying goodbye to someone close to you was part of the job and occurred often and far too regularly), I managed to get some light work done around the house. I did a little bit of work on preparing our sailboat and kayaks for the season. Anyway, this was the highlight of my week and I am thankful I had the opportunity to spend some time with Perry again.
This morning I awoke in pain worse than I had experienced all week. I immediately called my primary care doctor and made an appointment. I then called Sheila at work to see if she could leave work to drive me. In my condition, there was no way I could drive myself anywhere. Before Sheila even arrived home, the pain managed to hit new levels causing waves of nausea. I knew that this pain was now about to cause my Systemic Mastocytosis issues to crash which would cause life threatening anaphylaxia so I immediately took some emergency medications.
My appointment was still a few hours away when Sheila arrived home but we decided we should head down to the appointment as soon as possible. My health was clearly deteriorating rapidly.
It is only a ten minute drive to my doctor's office but the drive was miserable. Every little bump in the road was like being punched in my kidneys. The motion of the moving car was causing nausea. The car would get too hot, making me feel like I would vomit. The next moment I would be cold and shivering. I was thankful we only needed to drive 10 minutes away.
As I was checking in with the receptionist, between waves of nausea and holding back vomit, I started getting lightheaded and felt like I would collapse at any moment... the Systemic Mastocytosis anaphylaxia was now rearing its ugly head. I struggled to get to a seat in the waiting room but knew I would be on the floor soon.
My heart responded to the anaphylaxia... tachycardia brought my heart rate up to around 130 beats per minute... the nausea was getting worse and I needed a wastebasket in case I could no longer hold the vomit down... I felt the telltale signs of impending diarrhea too. All of this on top of the constant burning, searing pain in the area of my kidneys which rated in the 8-9 out of 10 on the pain scale. Sitting hurt... standing hurt... laying hurt... the pain was relentless. At this point Sheila went back to the receptionist area to tell them I needed to lay down and I needed medical attention immediately. They brought me in immediately.
The nurse who brought me into an examining room is someone I have known since my career brought me to Vermont in 1995. That familiarity made things a bit easier but, because of my crashing Systemic Mastocytosis symptomatology, I was also beginning to have cognitive problems and difficulty speaking. The one symptom which always gets me very emotional is difficulty speaking. Today was no different.
Sheila helped me convey my problems to the doctor. I didn't get to see my own primary care doctor because she was not available at the time of my early arrival. My doctor did stop in to my room while I was in doing a urinalysis collection so I missed her but she talked with Sheila for a bit while I was gone. Sheila tells me she seemed genuinely concerned.
We still don't know exactly what is going on but I was sent home with some heavy narcotics. My first doses did absolutely nothing to alleviate my pain in the least. A few hours later, when my pain was approaching the 8 out of 10 unbearable mark again, I called my doctor's office again before they closed for the day. I was beginning to think it was time for another emergency room visit.
I was advised to take more of my narcotics. I placed the bottles out in front of me on the table and said to Sheila, "I didn't think I would ever see this day". You see, I have always sworn and promised myself that narcotics would only be used a last resort or for end-of-life pain management. Now I have these narcotics on the table before me and am about to use drugs I do not want to use... drugs I hate... drugs I believe should be avoided at all cost. I suppose five days of intense, burning, searing pain is my limit. I needed relief.
Now, an hour after taking an increased dosage of narcotics, the edge has been knocked off my pain... finally. The pain is now only around a 5 or 6 out of 10 on the pain scale. This has been a long, rough week. Unfortunately, I think I am in for a rough weekend as well. The drugs are now doing their job at cutting enough of an edge off the pain to make surviving tolerable, but I am still left feeling as though I sold my soul in accepting the need for and use of narcotics.
Since Monday morning, I have been awaking every morning with intense pain in the area of my kidneys. This pain has been so bad at times that I can barely walk across a room. The odd thing is that the pain has mostly been when I awake in the morning and then wanes throughout the morning.
This problem, however, seems to be a relatively common problem for those of us suffering from the more aggressive form of Systemic Mastocytosis. The mast cells erroneously attack an internal organ, for instance the kidneys, and that causes irritated and inflamed nerve endings on and around my kidneys. But, before we assume this the cause, we must rule out everything else.
For Systemic Mastocytosis patients, there are always medical conditions that complicate this process of diagnosing new issues. For me, some of those complications are my recently found gallstones... a partially damaged liver from an illness 30 years ago... and extensive spinal injuries from two line-of-duty injuries. The process of diagnosing anything new can be long and complicated.
As bad as this week has been, this week did have a highlight worth mentioning. I awoke yesterday feeling good... almost normal... well, at least my 'new normal' as associated with my overall health. My good friend, Perry, happened to be in town and was available to visit. We have not seen him, nor his family, since Perry retired last summer and they moved to Virginia. Because I was feeling well yesterday morning, Perry visited me at home and we talked all morning. It was nice to have a few hours to catch up. After saying goodbye to Perry, again (this is the one thing I do not miss from my old career... it seems saying goodbye to someone close to you was part of the job and occurred often and far too regularly), I managed to get some light work done around the house. I did a little bit of work on preparing our sailboat and kayaks for the season. Anyway, this was the highlight of my week and I am thankful I had the opportunity to spend some time with Perry again.
This morning I awoke in pain worse than I had experienced all week. I immediately called my primary care doctor and made an appointment. I then called Sheila at work to see if she could leave work to drive me. In my condition, there was no way I could drive myself anywhere. Before Sheila even arrived home, the pain managed to hit new levels causing waves of nausea. I knew that this pain was now about to cause my Systemic Mastocytosis issues to crash which would cause life threatening anaphylaxia so I immediately took some emergency medications.
My appointment was still a few hours away when Sheila arrived home but we decided we should head down to the appointment as soon as possible. My health was clearly deteriorating rapidly.
It is only a ten minute drive to my doctor's office but the drive was miserable. Every little bump in the road was like being punched in my kidneys. The motion of the moving car was causing nausea. The car would get too hot, making me feel like I would vomit. The next moment I would be cold and shivering. I was thankful we only needed to drive 10 minutes away.
As I was checking in with the receptionist, between waves of nausea and holding back vomit, I started getting lightheaded and felt like I would collapse at any moment... the Systemic Mastocytosis anaphylaxia was now rearing its ugly head. I struggled to get to a seat in the waiting room but knew I would be on the floor soon.
My heart responded to the anaphylaxia... tachycardia brought my heart rate up to around 130 beats per minute... the nausea was getting worse and I needed a wastebasket in case I could no longer hold the vomit down... I felt the telltale signs of impending diarrhea too. All of this on top of the constant burning, searing pain in the area of my kidneys which rated in the 8-9 out of 10 on the pain scale. Sitting hurt... standing hurt... laying hurt... the pain was relentless. At this point Sheila went back to the receptionist area to tell them I needed to lay down and I needed medical attention immediately. They brought me in immediately.
The nurse who brought me into an examining room is someone I have known since my career brought me to Vermont in 1995. That familiarity made things a bit easier but, because of my crashing Systemic Mastocytosis symptomatology, I was also beginning to have cognitive problems and difficulty speaking. The one symptom which always gets me very emotional is difficulty speaking. Today was no different.
Sheila helped me convey my problems to the doctor. I didn't get to see my own primary care doctor because she was not available at the time of my early arrival. My doctor did stop in to my room while I was in doing a urinalysis collection so I missed her but she talked with Sheila for a bit while I was gone. Sheila tells me she seemed genuinely concerned.
We still don't know exactly what is going on but I was sent home with some heavy narcotics. My first doses did absolutely nothing to alleviate my pain in the least. A few hours later, when my pain was approaching the 8 out of 10 unbearable mark again, I called my doctor's office again before they closed for the day. I was beginning to think it was time for another emergency room visit.
I was advised to take more of my narcotics. I placed the bottles out in front of me on the table and said to Sheila, "I didn't think I would ever see this day". You see, I have always sworn and promised myself that narcotics would only be used a last resort or for end-of-life pain management. Now I have these narcotics on the table before me and am about to use drugs I do not want to use... drugs I hate... drugs I believe should be avoided at all cost. I suppose five days of intense, burning, searing pain is my limit. I needed relief.
Now, an hour after taking an increased dosage of narcotics, the edge has been knocked off my pain... finally. The pain is now only around a 5 or 6 out of 10 on the pain scale. This has been a long, rough week. Unfortunately, I think I am in for a rough weekend as well. The drugs are now doing their job at cutting enough of an edge off the pain to make surviving tolerable, but I am still left feeling as though I sold my soul in accepting the need for and use of narcotics.
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