Scattered Thoughts . . .

Heading back to Radiation Oncology... she looks as though she is walking with some purpose, doesn't she? I'm very far behind in blog entries as well as being very far behind in accomplishing things that need to be done around the house so it is time to try to put together a few blog entries in an attempt to doing some catching up.  My health over the past couple of months has been rather poor, generally speaking. As a result, I feel as though nothing has been accomplished since before Sheila's cancer diagnosis... so, nothing really has been accomplished since around the time of our time at the lake house last summer... and that's a loonnnngggg time! We had a short break in Sheila's treatment from Thanksgiving until the first week of January. This was a much needed break for both of us but not nearly long enough. Now we are back into hospital visits and medical appointments a couple of times each week. Unfortunately, I'm still exhausted! Sheila feels th

I've had Systemic Mastocytosis episodes ranging in severity from 1 to 10 over the past decade and a half. Some episodes are worse than others but they are all quite debilitating.  Some episodes last for weeks, some for days, and, on the rare occasion, only hours. The symptoms of these episodes are varied but always include physically, mentally and emotionally debilitating symptoms, a lot of pain, and even life threatening symptoms. Last night, however, I experienced a type of episode which was new for me. Many other patients experience this type of episode often but it was a first for me. I don't think this means much since each patient presents this illness differently. Last night, my breathing became difficult rather suddenly and then I quickly noticed that swallowing was difficult. I definitely knew this was not a good thing! Within about a minute, I realized that my throat was swelling and closing.  I quickly grabbed my bag of medications as well as my emergency medic

Today is Rare Disease Day. (Or, is it Rare Disease Awareness Day?)  Because of this occasion, I thought it would be appropriate to write about my feelings toward my illness, Systemic Mastocytosis, and awareness days such as today. In short, I suppose you could say that I feel similar about today's awareness day as I do on Memorial Day. On Memorial Day, I'm reminded of all the ghosts whom have left empty holes not only in my life, but it seems like in my soul as well.  Memorial Day is not a pleasant day for me and I tend to lock myself in my home on Memorial Day weekend. I don't want to watch movies of war... I don't like the memories fireworks evoke... I don't want to do anything which will remind me of what I try so hard to put into the back of my mind every day. Rare Disease Day feels the same to me and only reminds me of my early struggles with this illness... how long ago that was (read how unbearably long I have been struggling)... the support groups a

Far too often, I completely miss the signs preceding Systemic Mastocytosis episodes.  Today was another one of these times of missed clues. I had a few dizzy spells late in the afternoon...  This should have been a huge indicator of failing health. I strayed from my strict diet today by eating leftovers for lunch followed by processed food and condiments which are highly restricted for dinner...   I know better and after straying from my strict diet for two consecutive meals I should have preempted any decline in health with extra medications. I awoke from my three hour afternoon nap in a very warm bedroom...   the temperature in the bedroom was in the upper 70s which alone is more than enough to cause anaphylaxia and a violent reaction.  I should have known this would lead to crashing health. Any one of these things should have caused me to immediately jump on taking extra medications...  powerful medications...  and to collect my emergency medications.  I think I have fallen

Last night wasn't one of the best nights of my life.  It certainly wasn't the worst, but it was lousy nevertheless. Once again, my Systemic Mastocytosis negatively impacted my health.  This illness affects my health negatively every day, but that is my "new normal" so I don't really think much about my limitations when my health stays in this "new normal" range. How any transient symptoms manifest can vary greatly so, each time I have any problem of failing, debilitating health, it can be a relatively new experience.  Last night was a little strange... Earlier in the night, I felt 'okay'.  I was feeling a little full or bloated but nothing that would arouse suspicion.  (In hindsight, it should have.)  I had some moderate joint pain, but with the drastic change in weather today, I attributed this pain to the weather.  I was wrong, however, and these couple of things should have aroused some suspicion! In the middle of the night I ended up

I recently wrote about a rude and dangerous awakening during anaphylaxis as a result of one of my fairly typical Systemic Mastocytosis episodes.  Awakening to your heart suddenly and almost violently responding to anaphylaxis with palpitations and tachycardia is definitely a rude awakening.  Talk about a jump start to your morning! That post was about awaking to anaphylaxis in the morning.  Now, I will introduce you to the helplessness of anaphylaxis at bedtime...  and, worse yet, at a time when you are ridiculously careless. The other night, I laid down in bed for the night, had just started to read a magazine on my Kindle Fire, and suddenly felt the initial telltale signs of anaphylaxis.  I was suddenly lightheaded, couldn't breath and felt as though I would lose consciousness instantly.  I also had the usual but really weird sensation of falling that I have always had difficulty describing effectively.  It feels as though I am in a constant freefall through a long tube that