Scattered Thoughts . . .

F or most of this calendar year, my primary health problem has been related to breathing.  For better or worse, that seems to be changing a bit lately. Throughout this calendar year, it seemed like my mast cells were not all that active in most of my organs (which had been typical for a couple of decades) but were now active/over-active in my lungs.   In some ways, it seemed like I traded nausea, gastro-intestinal problems, abdominal pain and even kidney and liver pain for the consistent breathing difficulties I had been experiencing this year.   This change was not necessarily a good change nor a bad change.  It was just something different.   Healthy people tend to take breathing for granted but, as one might expect, even the slightest breathing difficulties affect everything .  My breathing problems this year have landed me in the hospital and I've had O2 levels in the low 80s far too often (below 95 is a problem).   All those other problems that I explained above (organ involv

I figured I would add a short health update here this evening.   I'm still waiting on some of the results from the bone marrow biopsy to come back but I think most of the results have come back at this point.  One pathology report is actually hidden from me and has been hidden from me for the past week which likely means there is something in that particular report that needs to be discussed (ie, not the best of news).  I meet with my oncologist again in three weeks, I think...  maybe in two weeks.  For some reason, the 18th of April is standing out in my mind though so it is probably in three weeks.  Naturally, until I meet with my oncologist, I will have no definitive answers.  Actually, I still may not get any definitive answers when I meet with her since we're (well, really our health professionals) still learning about this crappy illness.   That being said, there are some concerning test results that have come back since my biopsy.  Some of my numbers are worse than when

W ell, the stomach virus that is one of the things running rampant through society over the past few weeks has finally found its way to our house.   All day yesterday, I had twinges of odd intestinal problems...  sudden pains...  a short lived cramp...  then I started feeling like someone had knocked the wind out of me.  Within minutes, I was in the bathroom with diarrhea.  I'd come out for a bit, then would need to get back to the bathroom.  This continued through most of the night.  Even when I was in bed, I couldn't lay down.   Honestly though, what I experienced through the night was far less severe than one of my typical Systemic Mastocytosis episodes that involves my gastrointestinal tract.  Although, when this first started, I couldn't tell if it was viral or my illness.   While I was sitting at the piano last night before attempting to lay down in bed, I started to get lightheaded like I was going to pass out.  I did some epinephrine and that problem was quickly res

I missed a dose of medications at dinnertime last night and, before bedtime, my health was crashing.  By 10pm, I was sick and in the bathroom.  I finally made it to bed by 4am after taking some extra medications and emergency medications.  I still couldn't sleep until around 5:30am because of nausea and I was still feeling as though I might need to get the bathroom quickly. This hot, humid weather is not helping my health at all.  My health does not do well in consistent temperatures above about 79° or so and we have been well above that lately.  I'm finding that humidity about 60% or more along with temperatures in the 70s also negatively impacts my health and breathing.  The humidity hasn't been as bad as it typically is in coastal areas but it has been high enough to trigger some significant health issues for me.  I'm actually a bit surprised by how only mild humidity negatively affects my health. Anyway, my health is struggling in this climate...  a frustrating unse

Sheila and I are still quarantined at home as Sheila continues to work from home and the numbers of people infected around us multiplies.   Even before this virus, we very rarely wandered from the house for social things anyway so this new quarantine and 'shelter in place' order hasn't changed our daily life much at all.  By early to mid-January, it became abundantly clear to us that the virus was gaining a foothold in the US so we immediately stopped visiting restaurants, canceled all future travel plans for the foreseeable future and began cutting out our weekly shopping trips.  (This is when the Federal government should have began a serious attempt at containing and minimizing the effects of this virus.  We knew it was coming at this point so we immediately changed our behavior...   the White House, well, this White House only helps the wealthy so it would have been silly for anyone to seriously believe they would come up with an effective plan to minimize and contain

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

Sheila is recovering from her hospital visit a few days ago and we're ready to jump into more medical appointments for her. On the positive side, she is slowly recovering and feeling better. We're still waiting to see her Oncologist and her Primary Care doctor early this week to discuss these newest problems but, for now, she is feeling more stable.  My health, however, is taking a serious hit. I went out to mow the lawn after breakfast yesterday morning since it was a first day in a week that we finally had dry grass. It was beginning to get warm so I opted to forego pulling out the weed-whacker and just do a relatively quick mow. I figured I needed to minimize my time out in the sun, heat and humidity so I skipped the weed-whacking. My health does not do well in the heat and Saturday was a bit warm and quite humid. I knew the wisest thing to do would be to just run the mower over the lawn as quickly as possible without overdoing it and then get out of the heat.  About

My health has been deteriorating consistently since my last doctor visit a month ago. My new specialist (for a little more than a year now) decided to attempt to simplify my myriad of medications. Some medications were eliminated while others were increased. He sort of consolidated similar medications while eliminating one or two he felt might be unnecessary and added one medication that he felt might help.  These changes did slightly simplify my four daily doses of medications but, unfortunately, my health has been in serious decline since my last visit a month ago. I was getting more and more groggy, exhausted and weakened with each passing day. I was spending more and more time in the bathroom sick (no more needs to be said about that here). I was dizzy and I wasn't thinking clearly. Oddly, even though I was overwhelmingly groggy, I was feeling exceptionally restless. I was groggy, exhausted and restless all at the same time. I slept... a lot... and still couldn't get ne