Friday, November 23, 2018


Today is an emotional day for me.  It is not because it is Thanksgiving, and it is not because I am depressed.  It is emotional because I dread telling you that due to Paul’s health, we are unable to spend the winter at camp as we have every year since 2005. 

The decision is an easy one to make, yet it is a difficult one.  Paul’s health comes first.  As of now, we cannot risk spending the winter in the woods …off the grid …snowmobile only.  We have made the decision together with me the one that needed to convince Paul that it is for the best. 

Yes, we love camp and love the winter months, especially.  Though it is a hard life physically, it is such a reward for the heart and soul.  Tranquility in seclusion …what is better?  Where life is so quiet.  Where, through silence, the snowflakes seemingly whispering a hello as they gently drop around your feet.  Smile, always, I do …as when a child gives you a hug.  That inner warmth of love and tenderness of the heart. Where Mother Nature is more so honored and respected, even when she is filled with fury that brings the brutality and the harshness of winter.    I see her other side, she allows us to live with such beauty before us, around us -surrounded.  A smile is easy here (at camp).  There is no looking for it.  It always exists.  I love winter.  I love camp.  And, I love wintering at camp.  So, what can go wrong?  A lot.

It can go wrong, and quickly so when your husband is not a healthy man.  With MS and Stiff Person’s Syndrome, Lupus, Gout, just to name a few chronic and debilitating illnesses, he’s done well living here for as long as we have.  We purchased the camp in 2004, and this is the first winter since 2005 that we cannot be here as we want. 

While the doctors are scratching their heads about Paul’s health and the labels of his medical issues, adjusting medications, treatments, adding more pills, increasing visits and testing, we are patient.  We’ve learned how to be that, at least, just as we’ve learned to live off the grid for so long, despite Paul’s health.  Scenarios are always there.  They must be.  That is the only way I can ever be prepared -always a plan A, B, C, etc.

Though we may wipe away tears and talk with a quivering voice when the topic of no wintering at camp arises between us, we know it is better to be safe than sorry.  Paul has already been rescued from camp during the winter time (Feb. 2013) when his body seized up quickly.  It happened as we prepared for Nor’easter Nemo.  Those were some very, very long, long days for us.  I wrote about that in a book.  Many of you reading this followed along, offered to help, too.  Many of you followed us closely over the following year, especially.  Not to mention all those who asked behind the scenes if everything is REALLY OK because I was late writing a “G’d Mawnin’!” or slow updating throughout the day.

Since then, and it has been five years now if I don’t post my good morning within’ the time frame that others expect, we were flooded with personal messages asking if everything is OK.  I guess you worry about us more than we do.  I understand that concept and thank you for your love.  We get it. You all really have been very good to us.  That just makes writing this a bit harder.  If that makes any sense?

Upon telling our daughter and son that we aren’t wintering at camp this year, both had a long sigh of relief.  We knew they kept close tabs on us, but I did not know how worried they were about us wintering at camp for as long as we have.  Both fully supported and felt confident in our choice to do so, but their relief is evident.  They’ve both seen Paul when his body isn’t being nice, so they knew when online, no one else knew.  They know, too, that anything can happen at any minute and without much warning. 

They almost lost their father (yes, Paul) back in 1998 when his body crashed, and he lost all but 1,000 of his platelets.  Normal is 150,000-450,000.  Doctors like to see 275,000.  Paul was in a critical care unit for a while and received platelet transfusions.  It was a scary time for us.  He was a very sick man for a very long time.  In many ways, he never fully recovered from that.  Just as every setback since, there is never a full bounce-back.  There never will be.  The loss of platelets was called ITTP (Idiopathic Thrombocytopenia Purpura).  Even today, we know how to identify the symptoms as early as possible. In 2001I knew it was time for me to “retire” and stay home to take care of Paul fulltime.  I was 33 or 34.  Paul was 36 or 37.  During that bout with ITTP was when IVIG was given to Paul for the first time.  It worked!

Though, some may think that because we will not be at camp, means that we have time to visit and have visitors.  Time.  Yes, we will have that, but the visiting and visitor part must be limited.  Paul tires very easily.  Many days he is “horizontal” most, if not, all day.  On his better feeling days, he is up more, but when at camp, those few hours are a “catch up game”.  Whereas at our house, it is more rest time for him.  Maybe with more rest, he will be able to visit and be visited by others more.  Only time, his body, and he will know when and for how long.

Lately, at camp, we’ve fallen more and more behind.  His IVIG treatments stopped working, and there is a battle of giving him the type of infusion he needs.  Doesn't seem to matter if his neurologist writes the prescription for a specific kind or not.  The hospital tells us there is a national shortage, yet when a call is made to the company that makes it, there is no shortage of it at all.  So, what gives?  Paul needs the correct treatment.  We don't need him to lose his platelets again because his body decides it can not only wreak havoc as it already does but also to prevent ITTP from happening again.  He's been given the wrong infusion prescription for a few years now.  Time to stop THAT and insist on the proper concoction of antibodies his body needs.  Now, we climb up the chain and if need be, find a new location for his infusions ...a hospital that will ensure the prescribed treatment, not one that is more commonly used for others.  

This fall, we were not able to frame or cover the boat as in past years.  We were not able to fill our wood crib with winter heat either.  We have enough to get us by for a few good weather weeks, but not all winter as we have in the past.  Instead of fighting Mother Nature, we felt it was best to “retreat” for at least part of the winter.  As the doctors tweak their care, we will revisit the idea of camp life the very first second we can do so.  We can always bring in fuel blocks, so we are not concerned with staying warm upon our return.  The fact is -none of that is worth risking Paul’s health and well-being, nor is it worth the risk of constant worry if / when I leave for town by truck or by sled -constant communication, or not. 

So, while I thought long and hard how to write this little piece, I could not come up with pre-set thoughts or format.  Tonight, I figured I’d just start typing and let the words come out as they have so far.

“Retreat” is not an easy thought process for me, but Paul’s health comes first.  It must.  Family and friends will have to understand that just because we are not at camp, does not mean that we can just up and run anywhere, everywhere or on a whim.  It’s just not where we’re at location-wise, it has everything to do with Paul’s well-being.  Remember, I cannot work for a reason.  My “job” is to take care of my husband.  Otherwise, I’d be holding a job, because I believe in being a productive member of society.  Instead, I do what I can in the ways that I can.  No one has to get it, but Paul and I must live it. 

I will continue to post at the camp page …just differently, because life for us as of right now, is different.  For one, I can go barefoot and my feet not get cold.  I can jump into the jacuzzi and turn the jets on high.  I can turn a knob and have water.  I can push a lever and watch my poops and pees spiral into non-existence …out of sight, out of mind …but not forgotten, ‘cause that is great compost stuff!  I compost wherever we go so I will continue to have that duty, here there, everywhere.  Get chilly?  Press a button.  I feel wicked lazy already!   Soon, though, I will adopt an exercise regime, as well as find ways, eh hem, excuses to be outside in the fresh air.  Good news …the snow is stickier at home.  That means more snow sculpting!  WOO HOO!  No mattah where …Ima Big Kid at heart.  Chins up.  Smile upon the face. 

No worries!  We have people checking on the camp while we're not there and have a security system  in place, too. Yes, in the woods.  There are systems that work via live feed.  Gotta love technology!  Though we will be "Yo-Yo's" this winter, we hope our time away when needed is helpful to Paul for a quick return trip while he's doing better.  That is where the "yo-yo" comes into play.  Here, there, back and forth.  We both want to be at camp as much as possible.  Fingers crossed we'll be at camp more so than not.

It is Thanksgiving …and we have a LOT to be thankful for.  We all do.