Mast Cells with a Vengeance
I had an incredibly fun... an amazingly beautiful... an uncharacteristically busy... and a thoroughly entertaining weekend. Sheila and I spent the entire weekend together and had a very busy schedule of fun activities. As all patients struggling with Systemic Mastocytosis know all too well, getting to spend quality time together and sharing 'good health' is a blessing... a rare blessing!
We went out to a few restaurants in Waterbury on Friday and got to spend some time with some local friends in town. Then on Saturday, after a nice breakfast at home, we headed up to Burlington on Lake Champlain to do some shopping for sailboat parts and supplies. I was feeling relatively good and the weather was beautiful so we decided to make a day of it up in Burlington!
We had planned to meet some friends, Frank and Christine, up in Burlington sometime after we finished our shopping. Turns out we both pulled into the parking lot at the same time. It was still early in the day... it was sunny... warm... beautiful... trees budding... and people were on foot and bicycles all through the downtown Burlington area. So, we quickly collected all the change in both our cars so we could feed both parking meters and start our trek through downtown Burlington and Church Street tasting what Burlington has to offer in food and spirits. We had a great time and didn't get home until much later that night which, apparently was much later than my body felt was necessary!
On Sunday, we had a morning visit from Sheila's parents, her daughter and her two grandchildren. We don't get to see the grandchildren often so that was a nice addition to our morning. Afterward, Sheila worked in the yard while I constantly fed our neverending burn-pile fire with construction debris. We still have a few day's worth of burning to do before the construction debris is gone. I also spent time working on the sailboat. It was a very productive day and it turned out to be a beautiful, productive weekend altogether!
Now it is Monday morning... and a Monday morning it is!
I awoke early and in intense pain. My lower back was so painful it was causing unbearable nausea. The pain was so bad that simply getting myself to the bathroom was a painful, slow struggle. I was seeing stars and holding back vomit. I was weak and shivering so much I couldn't hold a glass of water. When one starts their day this way, you know it will be a very long day!
After some emergency medications... then my usual large assortment of morning medications... some effective visits to the bathroom... I am now feeling close enough to 'normal' to try to figure out what is happening with my body this morning.
The first thing I ruled out is any gallbladder problems. My pain was very low in my back. It felt more like a problem with the lower parts of my kidneys. It also felt like my lower gastrointestinal tract was on fire. If my gallbladder was having any problems, the pain would have been much higher... both high in my abdomen and high in my back toward my shoulder blade. The pain is nowhere near there.
As best as I can tell, my overabundant mast cells are probably attacking my kidneys and lower gastrointestinal tract. When the mast cells attack, they degranulate and release all sorts of mediators which cause various problems. One of the problems caused by mast cell degranulation is the irritation of nerve endings causing pain and swelling. I am definitely experiencing that this morning!
Compounding this problem is the fact that I am more than likely dehydrated. Dehydration definitely makes anything worse. Systemic Mastocytosis is no different. Also, I must nap everyday or my health crashes. I did not make any time to nap at all this weekend and I will pay the price today, for sure, and probably for the next few days. It amazes me that at one time, I could work tirelessly for days without sleep... I could live for months on only catnaps... but now I need 8-12 hours of sleep every night as well as 2-4 hours of sleep every afternoon. This illness can be very unpredictable, limiting and debilitating far too often but this overwhelming, oppressing fatigue seems to be omnipresent.
Sometimes we have relatively 'good days' of what we refer to as our "new normal". Other days can be so miserable that we could possibly wish for death just to get some relief. However, as is the same with healthy people, we simply have no idea of how our health will be from one moment to the next.
The only thing I am certain of right now is that today will be a very long, very painful day...
We went out to a few restaurants in Waterbury on Friday and got to spend some time with some local friends in town. Then on Saturday, after a nice breakfast at home, we headed up to Burlington on Lake Champlain to do some shopping for sailboat parts and supplies. I was feeling relatively good and the weather was beautiful so we decided to make a day of it up in Burlington!
We had planned to meet some friends, Frank and Christine, up in Burlington sometime after we finished our shopping. Turns out we both pulled into the parking lot at the same time. It was still early in the day... it was sunny... warm... beautiful... trees budding... and people were on foot and bicycles all through the downtown Burlington area. So, we quickly collected all the change in both our cars so we could feed both parking meters and start our trek through downtown Burlington and Church Street tasting what Burlington has to offer in food and spirits. We had a great time and didn't get home until much later that night which, apparently was much later than my body felt was necessary!
On Sunday, we had a morning visit from Sheila's parents, her daughter and her two grandchildren. We don't get to see the grandchildren often so that was a nice addition to our morning. Afterward, Sheila worked in the yard while I constantly fed our neverending burn-pile fire with construction debris. We still have a few day's worth of burning to do before the construction debris is gone. I also spent time working on the sailboat. It was a very productive day and it turned out to be a beautiful, productive weekend altogether!
Now it is Monday morning... and a Monday morning it is!
I awoke early and in intense pain. My lower back was so painful it was causing unbearable nausea. The pain was so bad that simply getting myself to the bathroom was a painful, slow struggle. I was seeing stars and holding back vomit. I was weak and shivering so much I couldn't hold a glass of water. When one starts their day this way, you know it will be a very long day!
After some emergency medications... then my usual large assortment of morning medications... some effective visits to the bathroom... I am now feeling close enough to 'normal' to try to figure out what is happening with my body this morning.
The first thing I ruled out is any gallbladder problems. My pain was very low in my back. It felt more like a problem with the lower parts of my kidneys. It also felt like my lower gastrointestinal tract was on fire. If my gallbladder was having any problems, the pain would have been much higher... both high in my abdomen and high in my back toward my shoulder blade. The pain is nowhere near there.
As best as I can tell, my overabundant mast cells are probably attacking my kidneys and lower gastrointestinal tract. When the mast cells attack, they degranulate and release all sorts of mediators which cause various problems. One of the problems caused by mast cell degranulation is the irritation of nerve endings causing pain and swelling. I am definitely experiencing that this morning!
Compounding this problem is the fact that I am more than likely dehydrated. Dehydration definitely makes anything worse. Systemic Mastocytosis is no different. Also, I must nap everyday or my health crashes. I did not make any time to nap at all this weekend and I will pay the price today, for sure, and probably for the next few days. It amazes me that at one time, I could work tirelessly for days without sleep... I could live for months on only catnaps... but now I need 8-12 hours of sleep every night as well as 2-4 hours of sleep every afternoon. This illness can be very unpredictable, limiting and debilitating far too often but this overwhelming, oppressing fatigue seems to be omnipresent.
Sometimes we have relatively 'good days' of what we refer to as our "new normal". Other days can be so miserable that we could possibly wish for death just to get some relief. However, as is the same with healthy people, we simply have no idea of how our health will be from one moment to the next.
The only thing I am certain of right now is that today will be a very long, very painful day...
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