Scattered Thoughts . . .

I have one of those illnesses that is actually quite consistent.  The symptoms are transient through time, space and frequency but the illness itself is quite consistent.  In order to get a few good days, I must pay the price with a few bad days.  Unfortunately, it is not an even trade-off...  I pay the price of a few good days by having to endure many, many days of bad days.  I'm in that low part of the trade-off cycle now.   On the last two days of our cross country train journey (Monday and Tuesday), I had an annoying sore throat.  I've had worse sore throats but it was consistent and wouldn't go away.  I was hoping that I was just a bit dehydrated since I was avoiding an excess of fluids due to availability of bathrooms.  Unfortunately, I would quickly realize that the sore throat was not due to slight dehydration.  Although dehydration can bring on other problems, that would have been a more simple problem to resolve...  pump fluids either orally or through IV. O

Two of my doctors have been advising me and even pressuring me to get a colonoscopy for quite some time. I attempted this a few years ago but, after discussing my health issues with the doctor who would be doing the procedure, we decided the risk was too high so we didn't even attempt it.  Now, I have a new mast cell specialist and he had referred me to a doctor to give a colonoscopy another shot. I was scheduled for late this afternoon.   In the meantime while waiting for this appointment date to arrive, I had another visit with my mast cell specialist. We briefly discussed how to manage my medications in the week leading up to the colonoscopy and we had a tentative plan in place. To be honest, I wasn't too optimistic about my health holding up through this procedure but I agreed to give it a try. The last thing I want to do is come across as non-compliant because I do need continued treatment. That being said, I also emphatically told Sheila that if this procedure was a pro

I had another medical appointment yesterday for my own health issues... some bloodwork... some shots... some discussions and advice... and now being referred to some of my usual specialists and one new specialist. When I got back home from my appointment, I was looking over my notes and a little bit of paperwork they sent home with me... I have to say that it is a bit disconcerting to come home from a medical appointment with paperwork spread across your coffee table and one of the documents is for an "Advanced Directive for Health Care". That being said, I have a feeling that quite a few patients are being sent home with this paperwork today. I hope so, anyway. Then again, my health is rather poor and it is in appointments such as this when just how poor my health truly is becomes a bit more obvious.  I left this long appointment with three more appointments. My experience with scheduling specialist appointments is that these appointments won't be behind me until we

As anyone would expect, after months of cancer treatment, Sheila is exhausted. To make the expected exhaustion from treatment worse, we've had at least two busy, absolutely hectic days each week since her radiation treatment ended... Thanksgiving, Liza's wedding out of town, Christmas dinner with friends, a few days in Manhattan, Christmas, and our New Year's Eve anniversary celebration with some friends (our 10th anniversary, actually). It has been an exceptionally busy month. After months of cancer treatment and then an exceptionally busy month socially, it comes as no surprise that Sheila is so exhausted that, at times, she needs to be off her feet because she feels as though she doesn't have the strength to keep her body upright. She is definitely overwhelmingly fatigued. Unfortunately, I'm not fairing much better. We're quite the pair right now. My health has been barely balancing on the side of stability over the past six months as we managed Sheila&

I have already written about my health crashing due to hot, humid weather over the past week but I haven't really written about the early part of the weekend. On the positive side, I think I am finally beyond this latest bout of poor health. Time will tell. Thursday, Friday and Saturday were rather lousy. Well, actually, the whole week was rather lousy but Thursday, Friday and Saturday were quite rough with some dangerously lousy health. I was overwhelmingly exhausted. I could have fallen asleep only a moment after deciding to allow myself to fall asleep at any time during the day. I was fighting staying awake all week long. This should have been my first clue that I was teetering on the brink of anaphylaxis with very low blood pressure... I didn't realize it yet though. I was having difficulty breathing at times. I often have difficulty breathing especially when the weather is hot like it was this past week so I was not associating this symptom with the fatigue. I should

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

My health often resembles a see-saw... my health swings upward and I experience relatively good days... then swings down and I experience rather miserable days... back up... back down... sometimes it balances in the middle for a relatively short period if I managed my health effectively and luck was on my side but, more often than not, it seems to move up and down like a pendulum moves side to side. Yesterday afternoon the see-saw started moving downward... after a little bit of dinner (I didn't eat much because I was feeling poorly), I had hoped that my health had leveled out in this short period before bedtime though... no such luck... Apparently, this see-saw continued on its downward swing through the night.  I was quite sick and in the bathroom for far too much of the night when I preferred to be and needed to be sleeping. Actually, I was overwhelmingly exhausted and struggling to keep my eyes open even while I was sick as a dog.  I really hate these nights. It takes a

Systemic Mastocytosis requires a delicate balance of rest, diet and medications in order to keep my body as stable as possible. In addition to managing my medications closely, I need to effectively monitor and manage my use of energy.  If my energy gets too low, my health crashes into anaphylaxis, neurological issues and/or miserable intestinal issues. If I cut back on rest, I struggle with the same problems. If I stray from my diet... same thing. If I forget a dose of medications... same thing. After well over a decade of managing my own health, I'm pretty good at listening to what my body is telling me about my health because, if I don't, my health often will cascade out of control before I even get a chance to throw specific extra medications at the problem. Sometimes, however, things can get out of control for no known reason... today was one of those times. I had a fairly productive morning doing a few little things that are all hobby-related. This kind of stuff isn&