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.

Wednesday, November 7, 2018

"Isn't Her Voice Beautiful?" - CRPS AWARENESS

“Isn’t Her Voice Beautiful?” – CRPS AWARENESS

Copyright 2018 by Lori-Ann Willey

Ever have an experience that warms the heart so much that even after a few weeks, the thought brings a smile to your face? Me, too.  I want to share a personal experience with you …one that is a bit sappy in the emotions, but one I feel is worthy of telling.

We’ve all seen the hats that read, CRS across the front of them.  CRS stands for, “Can’t Remember Shit”, right?  However, if you add another letter to that and make it read, CRPS, how many of you know what that means?  I assure you, it does not mean, “Can’t Remember Poopy Shit”.  I’m almost betting that those who suffer from CRPS would probably rather have the CRS label instead.

CRPS stands for Complex Regional Pain Syndrome.  Otherwise known as, Reflex Sympathetic Dystrophy Syndrome (RSD).  Haven’t heard of either of those?  How about, if I tell you that it is also known as, Suicide Disease?  Why?  

“…because so many go without proper diagnosis or their pain is not taken seriously by the medical community that they end up taking their own lives.” Stephanie, a sufferer of CRPS

Before you continue, please take a moment to study the chart on the right. It helps put CRPS / RSD into great perspective.

A couple of years ago, I became Facebook (and then, real life) friends with a woman named Stephanie after I asked if she was interested in becoming an Administrator of a Facebook group I created where Mainer’s help other Mainer’s with road conditions in hopes for safer travels throughout the great State of Maine.  Later, I learned that Stephanie, unfortunately, has CRPS.

Though at the time, I had never met Stephanie in person, she knew who Paul and I were via Facebook.  She knew our daughter who ensured her Dunkin’ Donuts coffee was to perfection, and she knew our oldest granddaughter, as she is the same age and in the same class as her son.  As I grew to know much about Stephanie as a person, it was very evident that she has great compassion, morals, and empathy.  Those qualities weren’t all that impressed me about the woman.  Her attitude and the great outlook on life are one to be admired, especially given the fact that she suffers from CRPS.

Back in the 1990’s, Paul and I had a website that we called, “Without Wheels”, because, thanks to the Internet, anyone can “travel” around the world, so to speak, even if bound to a bed or a wheelchair.  Without Wheels was a place for those with illnesses, diseases, and varying disabilities to share their stories with others …a support group if you will.  On the Internet, who’s to know if someone is disabled unless they make it known?  There are a lot of disabilities that are not seen by the eyes of others.  On the site, Paul shared his story about his Multiple Sclerosis experiences, and I shared the story about the death of our infant daughter due to Trisomy 18.  Through the site, we “met” many wonderful, wonderful people who also shared their stories, and we are still friends with them to this very day.  Unfortunately, some have since passed away.  So, when Stephanie introduced CRPS into my vocabulary, I grew curious.

About a year ago this past September, Stephanie had lost her ability to speak.  We all know how frustrating laryngitis can be, but imagine talking along and suddenly, mid-sentence, even, your voice is gone …and for months at a time.  It wasn’t until last November, while Paul and I were at Walmart, did Stephanie recognize us as we came through the doors.  Without a voice, she, being a pro at the no-voice thing by then, as it is a common occurrence for her, no matter what the doctors say, Stephanie got our attention and introduced herself …in a whisper, of course.  I will admit, my hearing in a room filled with people is not so great, so I struggled to understand some of her words. Several months later -March of the following year- for the second time we “bumped into each other”, her voice was still evasive.  Have you counted the month-span yet?  Yep, September – March …six months, and still no voice. Can you imagine that?

Jumping ahead a year since we first met - last month (mid-October) I happened to meet up with Stephanie at the school parking lot.  With big grins, I jumped out of the truck on a cold, windy day and gave big hugs.  To my surprise, I heard her voice for the first time ever -clear, soft, and beautiful!  Hoping not to make my shock obvious, we stood talking for a couple of minutes before I brought attention to her working voice box.  

How can I relate my surprise and joy?  Have you ever seen a video of a person who could not hear, but then after surgery, hearing their first sounds in life?  Or a blind person, after surgery, seeing colors, shapes, light, and faces for the first time?  If so, do you remember that wave of elation that fluttered through your heart that triggered teary emotions?  That is the best way to describe my amazement when I heard Stephanie speak to me in full, audible voice. A couple of days later, Paul went with me to pick up our granddaughters at school.  Again, Stephanie was there.  I backed into a parking spot beside her.  Paul lowered his window so we could speak through opened spaces.  As we talked, I didn't think Paul remembered the last time he saw her, Stephanie didn't have a voice, so I brought attention to it, "Isn't her voice beautiful?"  Instantly, he remembered and agreed with me.

November is CRPS Awareness Month.  In honor of our friend, I did some research and educated myself on this Syndrome so I could better understand what Stephanie was going through.  That was a year ago.  Together, we discussed our frustrations with medical professionals.  As with Paul and his many ailments, finding a doctor that understands is as much a battle as having the disabilities in the first place.  If one is diagnosed properly, it comes only after months and years of testing, head-scratching, trial medications, and frustration.  Doctor after doctor with little or no diagnosis …treat the symptoms of an unknown, little known, or a less popular belief is usually the result. 

CRPS, like with MS (Multiple Sclerosis), Fibromyalgia, and so many other neurological diseases, syndromes, etc. not all patients have the same symptoms, nor can they be described so they are understood, or relatable even to/by professionals.  The pain travels, it varies, it may “go away” here, but now it is “there”.  To the sufferers, the pain is here, there, or everywhere, if that makes sense.  They live with it …they have to.  There is no “going away”, per se.  If the patient is lucky, they can learn to block most of the pain when it is mild, but what is “mild” to them, could be like a massive bone fracture for the rest of us.  That is their mild …the only way it “goes away”. 

Odd symptoms that one sufferer may have, others do not, so there is no “constant”.  As a result, obtaining a true diagnosis is frustrating and to some, impossible, not to mention the fatigue of it all.  To such people stricken with uncommon illnesses, diseases, syndromes, etc., to become overtired, injured, catch a cold, or simply become stressed, can, and often does, trigger more symptoms, other ailments.  Avoiding fatigue, stress, and injury are biggies.

Life is a balance for us all, but more so for those with medical issues that often leave even the experts scratching their heads.  “Let’s try this …” is a common phrase by professionals.  “I would like to send you to ….” is another phrase.  All offer hope, while at the same time, offer dread of starting the whole diagnoses process over again …months and years go by with the hope that one day, someone will figure it out.  How many doctors?  Often, too many to count.  Meanwhile, for those who suffer from such ailments often struggle to find ways to live a normal life.  As mentioned above, CRPS is also known as “Suicide Disease”.  With as little as I’ve touched upon so far, you can begin to understand why.

Remember, because someone doesn’t look disabled, doesn’t mean they aren’t.  Just because a disabled person puts on a smile and tries to make the most of every day, does not mean they aren’t struggling inside.  With that said, some people are just naturally upbeat in the first place, even if these words are entered into your medical records: “Mr. Willey is too happy considering the grave nature of his medical condition.”  That quote will be explained another day. 

Why did I write all this?  It has been over 2 ½ weeks since I first heard Stephanie’s true voice for the first time.   Knowing she can lose that ability to speak at any minute on any day and for months on end, possibly for years, or forever makes me all sappy in the emotions department. 

So many of us don’t take the time to realize how lucky we are.  We have a headache?  Take an over the counter pill.  Achy feet?  Change shoes.  Simple solutions to temporary aches and pains are nothing in comparison …yet, I guess, all is relative. 

I think I will always hear Stephanie’s voice inside this head of mine.  It brings a smile to my face …and I admit, it’s made me teary-eyed a few times, too.  Appreciate what abilities you have while you have them because you just never know what the next moment will bring.  Just as Stephanie won’t know if she will have a voice, or the ability to walk from one day to the next, as both abilities have left her before.

When I told Stephanie how much it meant to me hearing her voice for the first time, how it is stuck in my head as a happy-sappy thought, I asked if I could use her name in this piece.  She gave permission and offered more information to help me understand CRPS.  Thankfully, her memory is better than mine, because she helped me piece the time frame together, too.