The Spot

We would not have to wait long.  During the summer of 1998, my in-laws came out for a visit.   We rode the Durango-Silverton steam train, saw Garden of the Gods, and Pikes Peak and toured one of the mines at Cripple Creek.  After getting home on the evening of our visit to the Royal Gorge bridge, my husband started complaining of numbness in his left foot.  We wondered if he had pinched a nerve while walking. 

He brought this new symptom to the attention of his doctor.  This time the doctor referred him to a neurologist at the United States Air Force Academy.  He began reviewing his records and decided that he had Tarsal Tunnel syndrome, which is the foot version of Carpal Tunnel syndrome, in which the tibial nerve becomes compressed as it travels through the tarsal tunnel in the foot.  It leads to tingling and numbness.  Since we had done a lot of walking in our sightseeing, it made perfect sense, so he was fitted with a shoe insert that would keep his foot at a certain position while he walked, thereby relieving the pressure on the nerve. 

After wearing the insert for several months, it became clear that it was not helping the numbness in his foot, so he once again saw the doctor.  This time he was sent to a PA Practitioner at the local Air Force base.  Several possibilities were discussed, including Multiple Sclerosis. 

As I look back on the early visits to all those doctors, it was as if I were watching a bizarre movie, where none of the  scenes made any sense….like some sort of medical puzzle.   As is typical of the military, we were always lucky if we could get in to see the same doctor, and it wasn’t unusual to have to change doctors because of reassignments, either by the doctor or the military member.    At any rate, it wasn’t unusual to spend part of the visit recounting your entire health history to a new doctor.  In my poor husband’s case, that history was becoming a bit long.  As the PA reviewed his recent health history, he decided to do an MRI.

Another aspect of the military is that you get used to anything…..when he told me that the MRI was at 11 pm, I didn’t bat an eye.   Of course I couldn’t go with him, since we had 2 small boys at home, and no one to come stay with them.  At the follow-up appointment to read the MRI, the PA showed him a spot…..on his brain.  His exact words were:  “Son, you’ve had a stroke”.  It was a Trans Ischemic Attack, or TIA.  The doctor began asking him if he had had any weird headaches, any unexplained symptoms of any kind.  We were scratching our heads, trying to think of anything…..anything at all.  The only odd occurrence that came to mind was on New Year’s Eve, 1993, when he had woken up in the middle of the night with a blinding headache.  He sat up in bed and yelled because it was so painful, and I thought I would have to take him to the ER because I was afraid it was an aneurism.  However, here we were in 1998, with the diagnosis of a stroke.  Would it have taken five years for the first symptom to occur?  Even more bizarre was the fact that a stroke had occurred in a 34 year old man.  No one could give us an explanation.  Once again, we were left shaking our heads and thinking, “well, that’s weird”.  Once again, we wandered, clueless, back into the demands of our busy little family.

The Anniversary

I look at the picture on the bookshelf:  it is of a young couple on their wedding day.  She is in a short white dress, with a bouquet of pink and burgundy flowers, he is in his Military uniform.  The promise of a wonderful future is written all over their faces.  We see no trace of the two fine boys they will raise, the wonderful places they will live, or the adventures they will have.  Nor do we see the struggles they will face:   their first fight, the first time he has to deploy to a place and she will not know where he is, the illness that will challenge them.  In this picture, this moment, it is a blank canvas.

I have to believe that is why we do not have crystal balls in the real sense.  If someone had placed one in front of this young couple and they had gotten a glimpse of their lives through the years, would they have been able to handle it?  Would they have held each others hand tighter and bravely continued on, or would they have run in opposite directions?  I think if they had been able to see into the future, it would not truly be theirs to own.  It has to be something that they claim only by living it, by waking up each day and taking it on with all they have. 

I look at this young couple of long ago, and I am so proud of them…proud of all that they will be able to withstand through the coming years.  Today they celebrate 30 years of a life together….they are us, and they are so much stronger than they will ever imagine.

The cough in the middle of the night

So, this is what despair feels like.  I am exhausted….I would compare a husband with a chronic cough to having a newborn.  First, the jarring, rattling cough wakes you from a sound sleep.  And so you listen…you offer to go get him something….ANYTHING…to make it stop.  Either he can’t stop coughing long enough to answer, or answering sends him into another fit of coughing, so he violently shakes his head.  So you wait:  will he calm down?  Will he cough until he passes out?  Will he cough until he throws up?  It’s purely a crap-shoot, so you prepare to jump up and get a bucket (yes, we keep a throw-up pan handy, even for the grown-ups), or prepare to leap if he starts to tip over in the other direction, since his distance from the edge of the bed makes the trajectory of a potential fall equal to a broken neck.  Thankfully, he calms down, and an hour or so later, you calm down enough to fall back to sleep.

An hour or so later, you are suddenly jolted awake….to total silence.  It’s quiet…TOO QUIET!!!  You listen, and you can’t even hear the inhale or exhale.  No nostril wheeze, no quiet purr.  Nothing.  You panic, eyes moving back and forth in the darkness, and cautiously reach out to touch…a cold arm.  And then he jerks his cold arm away, because your fingers are like ice.  So you sigh, and all is well.  Falling asleep again takes another hour or so.

About an hour later, the cough starts again, and well, you get it..lather, rinse and repeat.

So you are half-awake in the daytime, and the gray skies do nothing to lift your spirits.  You cannot pull yourself together enough to get anything done.  With each cough you hear, you feel a little more of yourself draining away.  You pray for just a spark of happy….just a bitty bit of something to make you feel that today might actually be a little better than yesterday.

It sounds strange, but this is the perfect time to do a load of laundry, or find a book to get lost in.  Say a prayer, asking for strength.   Look at a picture of a cute puppy or kitten…anything to make you smile.  Plan a week’s worth of meals…the point is to be in control of something, when everything else seems out of control.  Bottom line is this:  do ONE thing to make this day worth waking up for, because wake up, you did.

The Letter

Our story begins with a simple blood test.   For all the impact it would eventually have on our family, there was no fanfare…..no banners or trumpets.  There was no moment of clarity, until it was much too late.  Just a blood test.   Unlike results which announce a happy event, such as the impending arrival of a baby, or total devastation as in a cancer diagnosis, the blood test submitted by my husband in the fall of 1997 would begin as the ultimate test of trust, and eventually challenge all that I knew about comfort, strength and self sacrifice. 

It had been a whirlwind couple of years:  My husband was a Sergeant in the United States Air Force, and, after spending a year away from me and our two small sons, we began a new chapter in a small community south of Colorado Springs, Colorado.  It had been an adventurous summer getting to know the area, and we loved the mild weather and beauty of the outdoors.  We had weathered the Blizzard of 1997, and were now settling in to the rush of the holidays, and all the fun and anticipation that brings to a family with young children. 

It was during this time that he wanted to kick his blood donations up a notch, and decided to donate plasma.  This screening process took more time, and had to be completed in advance.  With my blessing, he completed the questionnaire and submitted a blood sample.

Since so many years have passed, it is hard to remember the exact wording of the form letter we received a few weeks later.  However, the word “syphilis” jumped out at me almost immediately, and flooded my heart with a numbing mix of anger, suspicion and hurt.  When he got home from work, we read the letter over and over.  It made no sense.  The implications were devastating, and it seemed that there would be no logical explanation.  Each of us, knowing our own innocence, blamed the other.  I wondered if we could ever repair the damage.  We thought of our recent past:  we had just spent the last year apart, he in a place that was legendary for breaking up marriages.  I had been the sole parent of a 5 year old and a newborn.  The math did not add up in his favor.

Ultimately the decision was made to see a doctor.  My bloodwork came back normal (was there any doubt?).  His came back negative for syphilis (I had no doubts, really I didn’t).  However, there were several markers in the results that prompted further testing.  One of the markers that would give a positive syphilis result was testing as abnormal.  The doctor ordered more bloodwork.  At that point we were just puzzled, but not concerned.  For reasons that were unclear to us, he was referred to a neurologist.  During the course of a series of visits, and many, many tests, we began to think that doctors would never figure out what we were dealing with.  

 When you are on the cusp of something so rare and unpredictable, you don’t start to worry right away.  I mean, how bad could it be?  You try to relate it to medical things you know about.  And then you wait.  In our case, with two young boys to raise, we had no choice but to jump back into family life with all we had, and wait to see what happened next. 

Here We Go Again

And so the old familiar tummy-twist is back…that queasy, sour feeling that I get when I have no idea what tomorrow will bring…will it be business as usual, or will I stumble through the day, wondering if our lives will ever be the same again?  Tomorrow we will get more results.  Each time I get an explanation, there is even more to worry about.  It turns out that the Mr. has a Staph infection.  In his lungs.  Today he had bloodwork done to determine other factors (my-speak for I have no idea what they are looking for).  The bottom line is that along with staph, they detected pneumonia.  There were other signs that warranted them checking to see if the infection is in his heart.  The more I hear, the more I want to curl into a ball and wait to wake up from this nightmare.

What is he thinking?  I know he is relieved that we are one step closer to treatment.  However, does he wonder what tomorrow will bring, the same as I do?  I try to imagine how scared he must be, but he is unable to talk because of the cough.  It is perpetual for me…an ebb and flow, depending on what is going on, but always there.  I can only imagine that for him, it’s 100 times worse.  The blessing is that if there is more bad news, it will be tempered with treatment.

 

 

About This Blog and our Experiences

Our relationship with the disorder Antiphospholipid Antibody Syndrome (APS) was on the rocks from the very beginning. Even the first clue that something was amiss would throw us into a whirlwind of doubt and mistrust, and begin our journey into the unknown.
Because recalling the events of this experience cannot be compressed into even a few paragraphs, each week I will feature Friday Flashback, which will give the details of the nuts and bolts of our journey. That will allow you to jump in and get caught up quickly.
It is my sincere hope that those who spend their days facing the fear and uncertainty of a rare illness might find support here, and maybe even a laugh or two. We caregivers are sometimes adrift in a sea of isolation as we continually give the very best of ourselves, whether we have the strength to do it or not.

Bronchoscopy

I hope we’ll get more answers today. I wish they could just look at slides and know exactly what to do. The thought of spending any more time watching him cough his head off makes me so tired. I know it’s 100 times worse for him. Last night he really gave me a scare when his cough suddenly started sounding like his esophagus was slamming shut. Between coughs, he said he was having an epiglottis spasm….it sounded like he was dying. So I stood there, trying to decide if I needed to get something for him to throw up in, or crank up his oxygen and call 911. I hate that helpless feeling, knowing there is absolutely nothing I can do. This can’t get fixed fast enough.

The entire procedure went very smoothly…also unusual for him. I expected for them to come tell me that they found a problem and needed to admit him right away, and when my buzzer sounded earlier than expected, the room began to spin a bit. He even told me in the recovery room that he thought he would open his eyes and be in a hospital room. The other good news is that no tumors were found, and the source seems to be bacterial. It will take at least 24 hours to get some of the results back, and hopefully get him started on a treatment. His pulmonologist said that anything goes as to what it could be. I was just thankful that we could complete a procedure and go home like regular, uncomplicated folks.

What’s in a Name?

What’s in a (blog) name?  Apparently, a lot.  There was a lot of thought put into deciding what would best sum up our experiences in a few catchy words, and I spent several days thinking of little else.  I devoted almost as much time to coming up with names for my children….well, not really, but it took a lot of time and analysis to name my newest baby.  Here were just a few of my favorites, and I might add, the darker my mood at the time, the darker, more cynical the name.

sinkorswim:  this was easy and straight to the point….some days meant that we jumped in and moved with the current, dog-paddling like crazy to avoid the undertow.  Just getting through the day and all it’s little emergencies meant that when I fell into bed at night, I couldn’t remember a single thing accomplished.  It has taken a lot of discipline and positive self-talk to realize that just getting through that manic, complicated day WAS the accomplishment.

curveballchronicles:  this was already taken, but it reflects the literal curve ball that  APS has dealt us.  The way the illness manifested itself with symptoms follows the actual pattern of a curveball….the numbness in his foot starting out so subtly, so small and unobtrusive that you wondered if he slept on it wrong, or twisted it and damaged a nerve, or maybe even walked awkwardly and was overcorrecting.  Just small annoyances that did not point to the big picture until POW!!! the ball thundered over home plate, and you realized that the big strike-out was the fact that you didn’t pay more attention to the little annoyances.

shortstrawmemoirs:  this came to me on a dark day, one of those ‘woe is me’ kind of days when I couldn’t lose the fact that we had been dealt a crappy hand in this life.  Years when we could have been enjoying our boys in their final years in the nest have been spent at doctor’s appointments and in Intensive Care Units.  The real take-away is that we were dealt the ultimate hand of commitment as a couple, and as a family, and won the round.

The name I chose sums it up:  Livingamystery portrays us, living a life of uncertainty.  This life, with all it’s mysteries past, present and future is ours:  bad or good, we must search for the lessons we are meant to learn.  May I remember this when times are bad, or not as good as they could be.