AN ALTERED STATE

My Mom, bless her heart, would give anything to be able to fix me. And for a long time, we both thought that fusing my spine at age 12 to treat my serious case of scoliosis would do just that. Of course, she understood more than me at that tender age, the hell I would face in that initial recovery but it was the recommended option at the time. Years ago, it was common to SHIELD kids from the truth so I really didn't have a true picture of what I would go through after the surgery. And perhaps, if I had known what was coming, I might have started running and never stopped.

The PAIN WAS SEARING, beyond anything I could have comprehended and my grandmother broke down in tears the day I asked her "WHY GOD HAD FORSAKEN ME?" I was incredibly grateful to have my grandparents there in the hospital during my recovery as we lived in different cities by this point. They actually had a very special trip to Hawaii planned when the news of my upcoming surgery was shared. Even though, it was to be their very first trip outside Canada, my grandparents didn't hesitate to cancel it and drive the 15 hours to be with me instead. Having your loved ones beside you in a dark time is the only thing that keeps you moving towards the light.

 

My mom  and grandmother would spend countless hours just holding my hand as I had to lie motionless on a Stryker frame while my back healed enough for a body cast. I remember staring straight at the floor between the fabric slats and waiting the four hours until the nurses came to administer my morphine shot and flip me the opposite direction. Since this was well before the time of I-EVERYTHING (ipods, iphones), there were no distractions and because of the pain and consideration to other patients, it was just the sound of the medical machines and constant announcements from the nurse's station. Here I was, an innocent kid who had never each touched a cigarette, now reduced to begging the nurses to give me my shot early and once in awhile out of compassion, they did. I honestly don't remember being told that I was on morphine and because of that, being naïve of drugs, was shocked at my body's violent response the day I had to go through withdrawal. The feeling that I must be dying is still clearly etched in my mind and still to this day,  I can't believe I was kept in the dark about what was happening.

So, twenty years later after living with a spine in an altered and unnatural state, the two remaining disks below my fusion were severely compressed. Eventually, even though, these two little disks had allowed me to have a full and active life. I understand now that they were simply too tired and worn out of doing the work of an entire spine for over twenty years.

 And just like a race-horse being released from the starting gate, the pain surged through my spine, ferocious and determined to ignite every nerve in my body to signal pain to my brain. My pain's surprise attack found me unprepared, defenseless, wearing not one piece of armour. I was devastated, this was not the life plan I had anticipated. I thought I had paid my dues regarding pain back when I was twelve.

 It would take time to gather strength and educate myself about the battle I was in because no matter how much I wished it away, the pain was here to stay. But don't count me out, THE WARRIOR INSIDE ME is willing to do anything to "LIVE WELL," DESPITE THE PAIN.

 THE RACE IS UNBEARABLE LONG AND DIFFICULT AT TIMES BUT I AM DETERMINED THAT WHEN WE-THE PAIN AND I- CROSS THE FINISH LINE, I WILL THE ONE IN FRONT,

EVEN IF IT'S JUST BY A NOSE.

THE CHEERING WILL BE DEAFENING!!

HOLDING ON TO DIGNITY

Everyone has heard the saying that there is always a "silver lining," in any difficult situation if you look hard enough. One of the gifts that has been given to me is living with far more clarity BECAUSE of my daily struggle with chronic pain. 

It may be a struggle or a windfall of some sort, either way- these events will clarify every relationship in your life. People seem to always reveal their true character and heart when faced with adversity, success and/or with money. People that win the lottery will often complain that they have loved ones, distant relatives, friends and even complete strangers that will  come out of the woodwork trying to become close enough to be gifted as well.

Certainly, I haven't found "extra friends," because of my constant pain but it has revealed who will still stand at my side with compassion. If you have a relationship with a loved one that is fractured, chances are that this new physical challenge will sadly widen the cracks. In most marriage vows, we say quite cheerfully "In sickness and in health," for better and for worse, " but it will soon become apparent how strong your relationship is when tested.

I often feel that I am in the midst of a storm with my partner, the skies are dark and the waves are immense but once in a while, we surface to take a breath and see the light before we are sucked under again. I can certainly empathize how difficult a journey it is to continue to walk along side your wife who now is very different because of her daily struggle with pain. And despite my obvious need for help, I would rather crawl than ask for help from someone who maybe doesn't want to be there.






So, we tread carefully on the path together and despite my body becoming more dependent....

 I can feel my spirit rise up REMINDING ME OF MY WORTH!! 

Losing my husband's shoulder as my "soft place to fall," would definitely crush my heart but Losing My Dignity would break it into a thousand pieces.

My Appointment with Dr. McDreamy

Today, I had an appointment with my chronic pain specialist. He definitely had the McDreamy thing going on- in fact, his hair was even longer and since he already walks everywhere incredibly fast, he reminds me of Hugh Grant in the movie "Music and Lyrics" a slightly neurotic rock star.

 I always drive to my once every three-four months appointment with a certain amount of trepidation as relatives always load me up with lots of questions to ask in my generally five minute appointment. Please don't get me wrong, he is a very nice and caring doctor but he is overworked and sees patient after patient in pain...it's difficult to be fully in the game with that type of schedule.

I wait for only twenty minutes and scan my small list of questions carefully thinking of how I can cover these off in the appointment. He suddenly appears and calls me in by name, something I definitely appreciate. We do the customary greeting and when he asks me how I am doing, I answer honestly that I have truly struggled in the past four months and that the level of pain and my new arthritis pain has rendered me quite depressed.

 I should mention that I am being treated for nerve pain caused by severe scoliosis that was diagnosed when I was twelve years old. I was fortunate enough at that time to have a stellar young surgeon who did a tremendous job of fusing my entire spine except for L4 and L5. It was the dreaded "S" curve that pulls all your spine and muscles one way at the top and the opposite way at the bottom- basically your spine is a mess. But this post is not meant for the details of that operation but rather what I face now-today.

So, after my rather bleak answer to my handsome doctor, I study his face to see if there is any reaction to what I have said but there is nothing, he is too busy looking at my chart. I know that he heard what I had said and that is must be truly difficult for him because to delve into the sadness involved having chronic pain could take hours so I actually understand why he needs to remain detached. We evaluate what medications I am currently taking (practically everything possible) and we agree that I need to go for my lower back injections (HORRAY, they hurt like hell but are necessary). "Hugh" ends the appointment with a beaming smile and says that we will re-access  in three months. I was wondering...."Yes," he frowns rather impatiently as we need to keep things moving. So, then I ask about one of my concerns over a potentially frightening side effects to one of my newer medications but am reassured that it won't affect me. Well, that's good news, I suppose and together, we walk off to his nurse where I watch him at the speed of light, write out a couple prescriptions for me before he says goodbye.

My movie star's nurse is quite the character herself, low-cut blouses and lots of jewelry and a superior attitude that rubs me the wrong way. She seems to pick up that I'm not too impressed by her and gives me a bad time about one of my prescriptions saying that "OH, SIGH," I have to type out this letter AGAIN because "OH SIGH," the prescription has lapsed so you might has well take a seat."
"Holy Mackerel, " I think silently to myself, it must be quite the letter because SHE was VERY PUT OUT. Ten slow minutes pass while I wonder if I can walk fast enough to my vehicle before a ticket and then suddenly the good fairy announces, "Your letter is finished," and proceeds to fold it three times before handing it too me. I felt like a chastised child, I didn't mean for the prescription to lapse... sometimes the appointments are so long in between that it can happen...how fortunate am I to have such a kind nurse to take her time to do this letter for me....OH WAIT, isn't that part of her job?  Imagine my surprise when later after arriving home, I  unfolded the precious letter to see ONE SENTENCE TYPED OUT, I actually laughed out loud.

I walk to my vehicle feeling the exact same way as I usually do after my appointments, a sense of sadness that despite the many medications, I still truly suffer. I hate putting all that stuff in my body and at the the end of the day, I still am just holding on.
BUT, in that same moment, I remember that I AM HOLDING ON so that is something, I guess.

Now, I get to phone my worried mom and grandmother to basically tell them nothing because so far my condition remains a challenge and there is no magic cure to fix a broken spine. I dread these calls because I know they want to heart more positive news but it just isn't the day for that. So, just before I make my first call, I take a long look at the beautiful blue sky and hope that a better treatment is on the horizon. Just like all the other people who are fighting a health challenge, we need to keep hopeful and be thankful to the doctors who continue to research better ways to treat all of us.

Think before you speak

I was incredibly thankful to have two really great days this past week...Christmas and Boxing Day. I think that it was my best Christmas Day in several years and that emotion carried me forward to Boxing day to the point that I actually agreed to go to a relative's house where they host a big party every year. My aunt and uncle are terrific people and I love them dearly but when I was thinking about if I was strong enough to spend several hours (as they live a long way out of the city) and attend their party as I haven't been for a few years- my mom actually made the comment "But, Lauria, you used to be so close to _ and _ and you really love them LIKE THIS HAD ANYTHING TO DO WITH GOING????

Sometimes, it is my mother who seems to not understand at all what I am going through or living with every day. I know that she is in quite a bit of denial how extensive this chronic pain has taken hold of my life but I wish she would think before she spoke - of course I know that she means well but her comments typically make me want to shut down even more.

So despite my mom's comments, I wore my favouite new green sweater and actually felt VERY HAPPY during the drive out to the Boxing Day party. I mean I hadn't felt this good in several months, I was flirting with my husband, etc. etc. so it was a huge thing for me. When we arrive, my kids and Blair go join most of the gang outside where they are ice-skating and I walk cheerfully  into the living room where a few people are seated and smiling say "hello."

 Before anyone could answer, this one gentleman (long term friend of my relatives) says in a dejected voice "Boy, you can sure tell that YOU are in a lot of pain, "and shakes his head sadly.

I was shocked and immediately felt like a  giant deflated balloon that just has been carelessly popped....my happiness flying into little pieces all over the room until you couldn't see a speck of joy left anymore. I wanted to scream at this man and say "Well, actually, I haven't felt so darn good in months and I look nice today... my hair is SUPER CUTE AND..... the PAIN IS NOT IN FRONT OF ME RIGHT NOW," but instead I sat down in their most comfortable chair and fought back tears for the next five long hours.

Going out and making idle conversation with many people I don't know or hardly know is just too much and when the pain reappeared in a vengeance a couple hours into the visit, I wasn't surprised and made room for it where I was sitting. God, I want to be so much more than just this STUPID PAIN, I think that its attempt to define who I am at all times is what has been the most difficult to bear.

So, just as a suggestion, when you first greet a person that you know suffers from pain, try to make your first comment a positive one because you really have no idea how much it took for this person to even join the crowd in the first place. Of course, it means a lot to have a person ask me how I'm doing but honestly, let's also discuss other things...anything but the pain.