Timing of Poor Health Sometimes Falls Between Events

A nice night out with friends for Christmas...

Even when my health is relatively well, I am always a bit concerned about the timing of my poor health. I don't actually worry about it because, after all, I can't control my health, but it does concern me enough to wonder about rescheduling and contingency plans. Realistically speaking, just because my health is relatively well at any given moment does not mean my health will continue to be relatively well. If anything, Mastocytosis has taught me to accept and expect unpredictability. Although, to be honest, long before Mastocytosis reared its ugly head, I had already come to terms with unpredictability due to my spinal injuries. "Unpredictability... accept it, expect it, embrace it!"

From November until the end of January, we have been quite busy physically and our schedules quite hectic. There were a number of events we were looking forward to and we, as always, were hoping my health would cooperate with this hectic schedule.

We had a number of events through December for Christmas that we knew we didn't want to miss... I love Christmas so this is always very important to me. I had some poor days in December... I had some 'tolerable' days... and I had a lot of relatively good days too and, fortunately, these relatively good days fell in sync with our family calendar!  I'm definitely thankful for that!

I managed to install a new
bathroom in the house...

Through November and December I was busy with plumbing projects, rough framing, electrical work, finish carpentry and painting so we could have a new half bathroom in our home... a long overdue addition! This project had been put on hold over and over again for years and even had a few brief stoppages through December while my health rebounded. 

Other priorities occasionally arose at times and other times my health was simply too poor. It was a tremendous relief to finally get this project finished... and, better yet, the new bathroom is beautiful... and it works flawlessly!  (knock on wood)

New Year's Eve is our anniversary so that date is always important to us. My health cooperated with that date as well. The week between Christmas and New Years was a bit rough for my health but I rebounded fairly well so we could enjoy New Year's Eve with friends. Thank you, Pete and Judy!  

In mid-January, we were hosting a day-long open house as a going-away party for Adam just before his departure to San Antonio for Air Force Basic Training. Then, two days after the party, we needed to drive Adam to his drop-off point. Then, the following weekend was our long annual out-of-town weekend for the Amherst Railway Society's Railroad Hobby Show. Clearly, there was no time in there for lousy health! Once again, my health was cooperative through most of that sequence of events. I had some poor health in between events but I really can't complain about that. My relatively good health days allowed me to enjoy that long sequence of events. 

By Christmas Eve, I refinished the kitchen floor
and carpeted the living room... painted...
good health prevailed!

That long train show weekend is always grueling for my health. It is very rough on my spinal injuries and it is far too physically demanding on my mast cell disease. Most years my health crashes at the show and, if not at the show, my health always crashes within a day or two of returning home. As a matter of fact, this show is so grueling on my health that I am contemplating purchasing a wheelchair for grueling events such as this one. After this show, the drive home is usually spent with me snoring away in the passenger seat... exhausted... drained... and weak.

This year, after a few months of keeping up a schedule which was far too demanding on my health, my health has really crashed upon our return home. The good news, however, is that my health has cooperated with our hectic schedule of events!

So, what does it mean when I say my health has "crashed"? 

For starters, my breathing becomes labored and I cannot catch my breath. As I type this blog entry, I sit with epinephrine injections and epinephrine inhalers next to my keyboard. Although I always carry these at all times, I've needed them tonight.

Every few minutes, my body seems to involuntarily gasp for some oxygen...  I breath, but my body just doesn't seem to be pulling in enough oxygen. When my body does one of these deep gasps and I still cannot get a refreshing breath of air, I grab the inhaler again. 

Lack of oxygen means my muscles are not getting the oxygen needed to function which means a significant lack of strength. Needless to say, I am weak.

I take extra medications whenever symptoms arise. I also take 'emergency' medications when multiple symptoms present themselves.

As anaphylaxis comes on... sometimes it is sudden... but sometimes it comes on more slowly with one symptom presenting itself at a time... almost as though my body is politely telling me, "hey... hey you... pay attention...  yeah, you... it is time to pay attention to me again...". The sudden times, by contrast, can be quite violent. Either way, it is not pleasant.

Although, by Sunday of the train show, my spine hurt badly
enough to need to get off my feet before I could no longer walk,
we had a great time at the show!

Breathing continues to decline... I get lightheaded... vision narrows... I get sparkles in my vision... I get nauseated... my face gets so flushed that I feel as though my face, neck and shoulders have been burnt badly... and it even looks that way! Before long, I simply cannot breath at all... no oxygen is making its way through my constricted lungs...

By now, more epinephrine is administered. I take some emergency medications as well. 

Fortunately for me, my body often responds to the developing anaphyaxis naturally on its own and, if not, it will respond to the epinephrine... my heart suddenly jumps into my throat... palpitations... my heart is suddenly in overdrive to make up for the loss of blood pressure... my heart races beyond 120 beats per minute and, more often than not, up into the 180 beats per minute range. I feel as though I am running a marathon yet I am just a heap on the floor.

At this point standing is impossible. Nausea turns to stomach pain, diarrhea. I'm still gasping for air and now I am fighting to stay conscious. I make sure I'm not going to fall by getting down as low as possible, loosen clothing, raise my feet, more epinephrine, and then more epinephrine in my hand... cellphone in the other hand to call someone, if necessary...

Over the course of hours, my health returns back to safe levels. The downside to this is that now the pain and fatigue really present themselves in a very noticeable way.

Our hosts on New Year's Eve (which happened to be our anniversary)

I am always fatigued to the point of needing to manage my energy every moment of every day but the fatigue after anaphylaxis is beyond anything I could effectively describe. If you've ever had a bad case of mononucleosis that lingers for months, you may begin to have a faint idea of how debilitating this fatigue truly is on my body, mind and soul. When I had mononucleosis, I didn't think fatigue could be worse... I was wrong.

The pain... it feels like I've been hit by a train and then run over by a truck. My bones hurt like they've been badly bruised. My joints are so inflamed that just walking across a room is excruciating... opening a previously opened jar feels like someone whacked my hand with a baseball bat...  the pain is also radiating from whatever area of my body experienced this latest mast cell degranulation event. Sometimes that is my kidneys... sometimes my liver... any organ including skin...  oh, skin...  if the skin is affected by this mast cell degranulation event, then I am in for a torturous period of itching, burning and prickly needle sensations where a rash and hives develop... pain lingers in the area of mast cell degranulation for days, sometimes weeks... and my bones and joints are always affected regardless of the transient nature of the symptoms. Quite simply, the pain is excruciating and debilitating.

And a healthy Christmas morning at our house with
the kids, the grandkids, and Nan and Pop...

This is where I've been for the past week. My bones hurt, my joints hurt... I'm exhausted... every morning I debate with myself over whether or not I will have the energy for a shower or whether I can cook. My energy level is severely diminished so I must always be careful where I use up my energy each day. Energy management is my mantra and this management is always occurring in my head... always. It must. If I do not effectively manage my energy, I would run out of energy within hours or sometimes minutes each and every day. Effective energy management... I could never accomplish anything without it.

So, tonight I sit at my desk and type... I'm having difficulty breathing and the pain in my bones and joints is constant. Vision issues will plague me for the entire recovery period. Fatigue will need to be managed. I will try to maintain the correct dosages of medications which can be a guessing game, at best. Dosages need to ebb and flow in order to keep my health as stable as possible.

There are foods to avoid. Fatiguing myself further will trigger worsening health. Missing doses of medications (which are needed at least five times through the day) or even delaying a dose of medications because it skipped my mind briefly can trigger anaphylaxis (and it always does). 

Some close friends and Sheila's parents visiting to
say goodbye to Adam...

I also have significant spinal injuries which always cause pain as well. I have two herniated disks, four bulging disks, six compressed disks, a broken up disk and vertebra in my neck, spinal stenosing in two areas, and osteophytosis. These injuries are so extensive that the surgeons have advised that I am not a candidate for surgery. 

This spinal pain is constant and varies anywhere from a three on the ten point pain scale to a ten. At least twice each day I somehow turn the wrong way and the pain will cause my knees to buckle. Anything and everything increases my spinal pain... and increased pain causes lingering inflammation. Turning my head to look behind me is difficult and painful (resulting in a minor car accident recently). This all pales in comparison to the mast cell disease though... but it is certainly worth mentioning because this, too, affects my daily life.

Right now, I am tired, weak, and having difficulty breathing. My stomach is bothering me and I may be looking at spending some time in the bathroom at some point tonight considering my symptoms this evening. When the mast cells affect the lower gastro-intestinal tract, hours are spent in the bathroom, sick as a dog... by the time this type of symptomatology has passed, I will be so fatigued that I could be asleep on the bathroom floor rather than using up precious energy in walking to the bedroom. (Plus, chances are I will need to head back to the bathroom much sooner than desired.)

The glimmer of light, however, is that none of these health problems impacted our family events over the past few months and that is a great thing! Really, it is amazing!

Now, I need to recover, again, so I can enjoy our cross country train trip and then some time at the lake house.... and all the activities those two things present... Oh, and if we can find the time (and health and energy), I'd like to visit the 'Wall of Honor' at the National Museum of the US Air Force to see and touch a stainless steel plate honoring little, old me... I don't know... it is just something I'd like to see and something I would like to do while I can...