Scattered Thoughts . . .

A lthough we didn't need to head to the hospital again last night, it was still a rather lousy night.  I felt lousy enough that wasn't sure I wouldn't be back at the hospital again. After arriving home from the hospital yesterday morning, we each ate something small.  Sheila fell asleep on the couch immediately after eating.  I fought falling asleep for a couple of hours fearing that I might slip back into severe anaphylaxis while sleeping.  I eventually got about four hours of sleep though.   We ate a bit again in the late afternoon.  I was feeling "okay"...  not great but not terrible.  I was sore from all the violent shivering the night before and exhausted from a lack of sleep and all my body went through with the multiple bouts of anaphylaxis. By early evening on Saturday, I wasn't feeling all that great again.  I was occasionally gasping for breath and I was now crampy, nauseated, and experiencing diarrhea...  all typical mast...

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...

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...

A week ago, I had written about having screwed up my prescription refills. One of my medications... one which is a mast cell stabilizer and an H1 blocker...  and one which is not yet FDA-approved... had fallen through the cracks of my record-keeping and memory which means I forgot to order a refill before I had run out of this medication.  For most prescriptions, people can just run to the local pharmacy to pick up a last minute prescription. I actually do this with any acute problems I am having. I bite the bullet (taking a serious hit in cost) and I buy the prescription locally so that I can start on the medication immediately.  Unfortunately, most of my medications are absurdly expensive and going to our local retail pharmacy is not financially possible for me. For instance, one of my medications, by itself, costs upwards of $40,000 annually. If I bought this medication locally rather than through my insurance plan's mail order program there would be two problems.....

Once or twice each year, I totally screw-up my medications by forgetting to order a prescription. As I was sorting out medications for our upcoming weekend excursion, I realized that I screwed up again.  One of my medications was almost empty when I pulled out the capsules needed for the weekend. This is not good.  This particular medication is a combination of mast cell stabilizer and an H1 blocker. It is actually something I need to get compounded by a pharmacist in Washington state because it is not an FDA-approved medication... nor is it covered by insurance... so I have it made just for me. I immediately called my doctor's office to inform them that I screwed up and I need them to call out to the pharmacist to order a new prescription. I probably won't see this new prescription for almost two weeks which means I will be without this particular medication for 7-10 days before the new prescription arrives.  This also means that the quality of my health will ...

My health always seems to be teetering on disaster.  I actually had a "relatively good" day on Sunday...  possibly the best day of health I've had in the past four months of consistently lousy health... contrasting that "good" health on Sunday, all of that quickly changed today. The crazy thing is that I think my health has crashed today not because of something completely out of my control but because I had to spread out today's four doses of medications over a significant longer period of time and, frankly,... I did not manage my medications effectively. Typically, my first dose of a cocktail of medications for Systemic Mastocytosis each day is at around 8am before breakfast.... then noon before lunch... then 4pm before dinner...  and then around 9pm before bed (I always must take these medications on an empty stomach). So, as you can see from this normal schedule, I only spread out my medications up to about five hours apart. History has proven that...

My Systemic Mastocytosis is rearing its ugly head again this week.  I could be feeling worse... but, I wish I was feeling better.  I feel as though I am in a constant battle which frustratingly involves two steps back and only one step forward, over and over and over... I'm very nauseated this morning...  weak...  overwhelmingly fatigued... mild tachycardia since awaking this morning (now down to 100 bpm... but was up around 120 bpm when I awoke). This is usually a sign that I had an anaphylaxic episode in my sleep before awaking.   During an anaphylaxic episode, if I am awake, I notice a marked weakness and heaviness in my legs, vision becomes narrow, and breathing difficulties start.  These are my usual signs of impending anaphylaxia and I must jump on emergency medications immediately... if I am awake, that is.  If this happens in my sleep, as it sometimes does, I must hope that my body responds naturally and effectively to this sudden drop in b...

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 me...

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 free...

The past few days have been quite miserable, to say the least!  In one of my blog posts from the other day, I mentioned that I was thinking my mast cells were attacking my kidneys.  I suppose that could be happening but this is, by far, the worst pain I have had in a very long time.  We came uncomfortably close to an emergency room visit yesterday morning.  Sheila stayed home from work until we decided to either drive me to the hospital or until my pain subsided enough to handle the day on my own. The pain is only problematic between 3-9am...  I still have the pain throughout the day but it is quite tolerable the rest of the day.  This pain is a burning, searing pain seemingly emanating from the lower part of my kidneys in my back and then radiating out to all of my lower abdomen down to my groin making the simple act of walking excruciatingly painful, if not impossible.  This pain rates an 8 on the 10 point pain scale. I've been flushing my body w...