Two Steps Backward

Overall, I have felt like I was recovering fairly steadily over the past two and a half weeks since my emergency hospital visit.  There was a bit of seesawing back and forth but I took a couple of significant steps backward last night.  Today, I'm actually feeling as though I am back at square one which would be the day after coming home from the hospital.

At dinnertime last night, Sheila and I headed to Shaw's to do our weekly food shopping.  I hadn't done this since before my ambulance ride to the hospital a few weeks ago so this would be the first big test of my current health and recovery.  

Although the store is only about seven minutes away, I started feeling health problems coming on about halfway there.  It started with some relatively minor difficulty breathing.  I used my inhaler in an attempt to stay ahead of the problem.  Also, I "just didn't feel right".  I couldn't put my finger on what exactly wasn't right but I knew I didn't feel right.  In hindsight, this should have immediately registered as a reason to take some emergency medications immediately but I think I was too focused on trying to figure out what didn't feel right.

I was feeling slightly better when we arrived at the store so I chose to continue on, hoping that I was now on the rebound.  

We had to pick up one of Sheila's prescriptions so, when we entered the store, we headed directly to the pharmacy on the other end of the store.  Unfortunately, this walk across the store was enough to cause more breathing problems again.  I took a seat in one of the vaccination seats and tried to breathe.  

As I sat there, I was trying to figure out my options.  If I headed out to the car to wait for Sheila to do our shopping, I might go into anaphylaxis just like when we had to call the ambulance a few weeks ago.  I didn't have my cellphone on me so I wouldn't even be able to call Sheila if I had a problem nevermind call 911.  Going to the car alone didn't seem like a wise idea.  Instead, I chose to use my epinephrine inhaler.  If I had to leave the store, we would both leave the store.

The particular inhaler that I chose to use puts a small dose of epinephrine directly into my lungs.  I used it once...  then another time a few minutes later.  Within a few short minutes, I was feeling "okay"...  not good, not terrible, but okay...  so we continued on with our shopping.  It didn't take long before I was feeling the effects of the epinephrine...  jittery, tachycardia...  which, really, is a good thing because that is what the epinephrine is supposed to do.  

We managed to finish our shopping and then headed home.  Actually, I felt fairly close to what I would consider "normal" by the time we entered the house so that was good and I was thinking this little mast cell episode was behind me.  In hindsight, once again, I really should have taken some extra emergency medications when we arrived home...  or while at Shaw's...  but I failed to do so.  

We made a pan of franks and beans for a small dinner.  I think that brought on some absolutely miserable heartburn for me.  I don't ever get heartburn so this was sort of uncharted territory for me.  The pain was around a seven on the ten point pain scale.  I could not get comfortable at all no matter how I tried to sit or lie down or lean back on the couch.  I decided to take a 150mg Zantac in the hope that it would alleviate some of the heartburn.  I felt like someone had punched me in the chest, the lower sternum, in that spot where you get the wind knocked out of you.  

Before long, however, I was having some difficulty breathing again and my vision was narrowing with some sparkles in my vision.  This was a sign of impending anaphylaxis so I needed to become more pro-active in treatment again and I think this elicited an "oh, damn...  what the hell is going on with my body!" from me.  I was referring to this recurring crashing of my health through the past few weeks.  

Now I was getting hot and needed to remove my sweatshirt which also is not a good sign.  These are all signs of impending anaphylaxis.  

I took a powerful H1 Blocker...  then took my nighttime dose of my everyday medications...  I may have used my epinephrine again (I can't remember for sure but I suspect I did considering my symptoms)...  after about a half hour of struggling, I felt like I was getting anxious and needing to calm down.  Anxiety is a major trigger for my illness which causes mast cell degranulation and I was definitely getting anxious now at the thought of possibly needing to call 911 again.  Getting anxious was only making things worse so I added an anti-anxiety medication too because I felt this anxiety would likely be worsening the reaction that was happening in my body.

Now, another symptom appeared...  I was flushing with my face beet red...  I even felt it come on with a burning sensation.  Sheila confirmed that I was very red.

I think all the medications I threw at this helped because, within another half hour, all of the symptoms slowly but evenly subsided.  I have to say that this was a very rough and painful hour with thoughts of calling 911 again. 

Sheila had been watching me closely and, by now, it was well past our usual bedtime.  I told Sheila I was feeling well enough to head to the bedroom.  The medications must have helped because, thankfully, all of these symptoms seemed to dissipate as quickly as they appeared.  About an hour after the symptoms had worsened to an unbearable level, they just seemed to disappear within minutes. 

As I laid in bed, my mind was trying to figure out what may have caused this bout of near anaphylaxis.  Well, it really was two bouts of near anaphylaxis within a few short hours.  At that point I couldn't help but think that my health was not at all ready for wandering from the house.  

I should point out that being in a car always bothers me greatly but I rarely mention it.  I have irreparable extensive spinal injuries so the little bit of vibration and small bumps while riding in a car are painful.  Most people don't notice those little vibrations and bumps but they are quite painful for me.  Inflammation is bad for keeping my mast cells stable too so this can trigger systemic mastocytosis problems.  

Some car rides are more painful than others but wintertime with snow and ice on the road is always bumpier and more painful.  When those same vibrations and bumps add inflammation to my spinal injuries, this affect my mast cells.  My body gets a double-whammy.  My thoughts during this car ride to the market were that my health was not at all ready for a car ride, not even a very short car ride.  

This morning, I opened my bag of medications to find that I missed a dose of my primary mast cell stabilizer yesterday.  I suspect it was my dinnertime dose that was missed right before we headed out to do some food shopping.  This drug is supposed to be mixed in water.  I know I drank the water and took some of my pills but, clearly, I forgot to put the important drug in the water.  This is the likely cause of my problems last night!  That being said, if my health crashed so spectacularly within just minutes of missing that does of medications, then this is a clear sign that my health is still bordering on the cusp of instability and that is not good.  

So, I think what I need to do is to go back to throwing a bunch of extra medications at my body every day for the next week.  I need to get ahead of the instability of my mast cells.  Adding more H1 and H2 blockers into my body, consistently, will allow these blockers to bind with the appropriate receptors.  So, throwing more of these medications at my body, in addition to some extra mast cell stabilizers, should help to put me into a safer place rather than constantly on the cusp of anaphylaxis.  Those are my thoughts on this and that is my plan anyway.  We'll see how that goes.

At this point and as one might expect, I have lost complete faith in my body.  So far, it has been a solid two and a half weeks of having no faith in my body and health.  Common sense is telling me that if I don't trust my body and health for three weeks, then I will need another six weeks of good health beyond that point before I will feel comfortable to fully trust my body and health again.  So, when will I have very good health again?  Maybe by this weekend?  So, that would be three weeks of health so terrible that I cannot trust my body to function normally.  Three weeks times two = six weeks before I will allow myself to trust my body and health.  So, common sense is telling me that I probably won't trust my body again until mid-March, at best.  

I have another hospital visit scheduled in early March for a bone marrow biopsy.  This will likely delay my ability to trust my body again.  Getting around will be a bit painful for a few days after that procedure and it may trigger more mast cell problems for a while.  Every little thing angers my mast cells and then they dump all sorts of mediators into my body which cause debilitating and life-threatening symptoms.  

So, I had a significant setback in my recovery last night.  Now, looking at this realistically, I honestly realize that I'm looking at another month or two of recovery...  that is, assuming no more major problems....