Scattered Thoughts . . .

Sheila nudged me awake in the middle of the night last night...  I thought she was waking me because I was having another violent nightmare again (which, unfortunately, happens too often)... and I immediately said to myself, "...wait a second... I wasn't having a nightmare."   I was thinking, "This must be serious..." All she said was, "I need you to... " and I jumped up out of bed to see what was wrong.   She was about to vomit... she couldn't move... she couldn't focus her eyes as they darted violently back and forth... she wanted me to get a bucket. I ran for the bucket and a plastic bag while all sorts of first aid techniques were running through my head... and, as I wondered why this was happening.  She kept saying, "I can't move... I can't move... I think I'm going to be sick..." and she looked terrible. She was stiff yet she seemed to be only as flat as the contour of the bed and pillow as though she were

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

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

We had a busy weekend again with the grandchildren. It is always nice to have them around but this weekend my health did not cooperate. I screwed up a dose of medications on Saturday... and, other than a 15 minute snooze in the car on the way back from Burlington, I missed my usual 2 hour daily nap... and now my health is paying for these problems. I could barely keep my eyes open on Sunday (yesterday). I felt as though I had been heavily drugged and was fighting losing consciousness. I finally had a chance to lay on the couch in the afternoon to try to get some much needed rest. I slept for about two hours but I had a very difficult time waking myself up enough to even get up off the couch. I would try to awaken but my eyes wouldn't stay open and I would fall asleep again... and then again... and again.  As I was lying there, fighting falling asleep yet again, I was wondering if I might have experienced anaphylaxis in my sleep again.  The post anaphylaxis symptoms are very o

I had a fairly good day yesterday... my health was relatively stable... I did some annual staining around the outside of the house... I assembled a hand pump station and stained it... I assembled the galvanized plumbing fittings... it was a productive day! This doesn't mean I didn't have moments of borderline lousy health yesterday... I did. A few times during the day, I needed to cool down... cold showers... cold water over my head until I cooled down... cold water on the insides of my wrists to cool down my blood... It was around 90 degrees all day so I had to work hard at keeping my body cool so my health would not fail. Around lunchtime yesterday, I wheeled our air conditioner to a window... set up the vent in the window... plugged it in... and we had air conditioning in our living room, kitchen and bedroom. I might need to resort to turning on the air conditioning today just to cut the edge on the humidity which is causing serious breathing issues for me today. Today

This morning, I wrote about how I missed a dose of medications yesterday... then missed some more medications last night... then missed a medication this morning... and how this sort of thing snowballs into something out of control...  This snowball has indeed enlarged and gotten out of control! This is a dangerous sequence of events for anyone struggling with Systemic Mastocytosis. Today was a "down" day for me... trying to recover from the missed medications... rest up... avoiding the heat and humidity (which trigger anaphylaxis and miserable health)... so, after lunch I laid down on the couch in the air conditioned living room to try to catch up on much needed sleep and to, hopefully, recover. The good news is that I had no problems whatsoever in falling asleep... The bad news is I was awakened very abruptly. My chest was pounding in palpitations... I was groggy... although I awakened suddenly, I was still groggy...  and feeling weak... I still wasn't thinking cl

Yesterday... it was brutal for a couple of hours. I was in and out of the bathroom, terribly sick and nauseated, and teetering on complete anaphylaxis. It was not a pleasant few hours. Systemic Mastocytosis is a rare illness in which the body's mast cells will indiscriminately 'attack' the body rather than their usual enemies such as wounds, pathogens and allergy. During this process, the mast cells will release a bunch of mediators which causes countless symptoms including anaphylaxis.  Typically, I do well at handling most of the resulting symptoms but anaphylaxis is a tough one to handle. When all these mediators are dumped into the body by my mast cells, my body responds by going into anaphylactic shock or at least bordering on anaphylactic shock or anaphylaxis. Yesterday, after breakfast, I started feeling rather poorly. My stomach was bothering me. I was a bit nauseated. Before long, I knew I would be sick and in the bathroom. I checked for my pulse... I had a

After a very rough week of lousy health and a lot of pain, I started feeling a bit better last night and this morning. As a result, I managed to get a little bit of work done on the house.  In the big scheme of things, what I accomplished was very little, actually...  just a tiny little bit of staining outdoors... but it was more than I had accomplished in at least a week. I stained a new landscaping step I installed a couple of weeks ago along our short stone pathway to the back door. While I had the stain out, mixed, and ready-to-go, I decided to stain the two steps leading up to our front deck as well as a small landing at our back door.  The positive thing is I managed to get a small task accomplished this morning. The negative thing is I feel as though my health has now taken a couple of steps backward again. I slept all afternoon which was necessary and really nice especially since I slept in a nice, cool, air-conditioned room. Unfortunately, I am still completely exhausted

When I awoke from my nap yesterday afternoon, I immediately noticed that I was experiencing some pretty intense nausea. Nausea is a fairly regular visitor for any Systemic Mastocytosis patient and I'm no different. At the time, I was hoping that my dinnertime medications would knock that down and I would be feeling better...  I took my meds... unfortunately, the nausea only got worse. We headed out to our local supermarket to pick up some food and this is where the nausea became unbearable. At this point I was holding down puke... I had a few small dizzy spells... and my vision was narrowing. I knew I needed more emergency medications before my condition worsened into all-out anaphylaxis. All these symptoms are signs that my body is headed toward anaphylaxis and unconsciousness. Out came my emergency medications and I popped a few pills immediately.  The nausea stuck with me all night long and there is still a little bit lingering this morning but my condition never worsened in

Last night was one of those exceptionally bad nights... a bad, bad night... When Sheila and I headed to the bedroom for the night, I was feeling rather lousy and suspected my health would be crashing before long.  My stomach was upset and gurgling... I was very nauseated holding back vomit... I was a bit dizzy... and I had been flushed all evening. I should have jumped on taking extra medications and emergency medications right away. I don't know why I didn't... perhaps I was experiencing cognitive problems also so was not thinking clearly. Anyway, I didn't take any extra medications. Before long the dizziness felt more like light-headedness and I definitely need to get to the bathroom as soon as possible. I was sick as a dog.  At this point, I knew I needed extra emergency medications but now I was stuck in the bathroom, sick, without a glass for water to help down a few emergency pills.   I knew the first thing I needed was anti-nausea medications. The nausea was