Peripherally-Neuropathically NERVOUS..... EEEEEK!!!

I find myself suddenly nervous.

Just over a week ago I had an intake assessment interview for the Neurology Day Program at a local hospital in hopes that they could help me find sure footing once again. The lady I met with told me that things would move quickly from that point and I would know within a week whether or not they would take on my case. There were three possibilities, well four if you count the possibility of not being accepted at all but that was never an option in MY mind... I would either be put into the Outpatient Neurology Day Program, the Outpatient Physio Program or (my worst fear) the Inpatient Neurology Program. I was gratefully put into the Neurology Day Program and am to start this Wednesday, only two short days from now.

When the phone call came that I would be starting the day program... well, I can't even begin to describe the instant relief I felt so this nervousness I'm feeling right now is throwing me a little. I want to heal and I want to be able to live my life physically confident again. So why my sudden new fears when I have been so long desperate for helpful therapies?? Am I afraid that my legs will fail me? Yes! Am I afraid of having to admit that things are hard for me when I always try to just brush the struggles off? Yes! Am I afraid I will be embarrassed in being seen wobbling and faltering during physical therapy? Yes! Am I afraid of being seen with tears from my mortification? Yes! Am I afraid I will ultimately have to give in to being stuck with a walker? Terrified!!!

I know what you're thinking already, that I am being ridiculously vain in my worries and I know you would be right... still, these are my fears, as silly as they might seem. Before the Peripheral Neuropathy happened to me I may have thought the same but being the supporter is, without doubt, much easier than having to accept being supported in times like this. If this had happened to anyone else I'd have been the first to say... Who cares if people look at you or what anybody else might think? ...but it's different when you're the one being judged, even if it's only in your own mind.

I don't know how long I will be in the program or what mixture of therapies I will be working my way through but I do know that I will put everything I am into everything I do toward finally and fully healing. Wednesday I have my physio therapy assessment followed on Friday by my occupational therapy assessment and full program Orientation. I'm as excited and hopeful as I am worried and nervous but ultimately I know that this is what I have to do if I want to live my life fully and happily healthy again... out of hiding!

At my assessment interview, the Counsellor had asked me what my goals for therapy are and it threw me a little. For sixteen months my goal had been just to be MY normal again but over the past week and a half I've really been thinking about that question.


And I do have goals I want to work toward.....

1) To walk CONFIDENTLY on my own again.

2) To climb stairs normally rather than having to crawl up and down.

3) To be able to safely walk both of my boys (Greyhounds, for those who don't know) on my own.

4) To go hiking again.

5) To strengthen my body so I will be less tired and hopefully have less pain from the struggles of even the most basic movements.

6) To lose the weight I've packed on with not being physically able to workout like I did before the Neuropathy attacked me.


I am not asking for perfection, I am just asking for myself back and I'm gonna work SO hard to make it happen. I never meant for this to become a 'recovery blog' but it may seem that way for a little while because healing sometimes is in sharing the struggles just as much as it is in physically working them away.

The Incredibly Respectful Cookie Call...

I was having a really great day... I was getting things done, my boys had been happy to get to play outside in the fresh air and sunshine for a few minutes, I had even finished sewing up the last bits on the boys Spring jackets; life was awesome!

And then my husband phoned from work. And it aaaaaallllllll turned to crap.....

It went a little something like this:



"H'lloooooooo..." - my usual greeting when I see his number on the phone.

"Hey... one of the guys kids is selling frozen cookie dough for school or hockey or somethin'..... what kinds do you want?"

"Okay... well, am I supposed to just guess at what kinds there might be???"

"Oh... yeah hang on, there's uh... where the hell is the list? KELLYYYYYY!!! Did you take the cookie list? ..... Hang on, she's bringing it back... Okay, there's White Chocolate Macadamia Nut, Peanut Butter, Oatmeal Raisin..."

"Oooooh, Oatmeal Raisin, please!" I interrupted him immediately and excitedly.

"No, you don't like raisins... Okay I forgot where I was, so there's White Choc....."

"Wait! I just said 'Oatmeal Raisin'!"

"But you DON'T like RAISINNNNNS!!!"

"I don't like LIGHT RAISINS and Oatmeal Raisin Cookies are usually ALWAYS made with DARK RAISINS... and I LOVE Oatmeal Raisin COOKIES!!!!!"

"And what if these ones are made with LIGHT RAISINS, GILLIAN?!! What then? We'll be stuck with these cookie doughs in our freezer FOREVER!!"

"Okay, well how 'bout you just tell me what the MOTHERFUCK KIND yooouuuuuu want then?!!"

"Okay, I'll give you the options, let me just say them all this time before you answer... we have... White Chocolate Macadamia Nut, Peanut Butter, Oatmeal Raisin, Carn..."

"Okay," I jumped in again, "if I'm not allowed to have Oatmeal Raisin then why THE FUCK would you even give me that option from the list again???"

"Oh, for fucksakes..... GILLIAN... it's on the list and I'm just reading you the whole motherfuckin' list!"

"Fine! Tell me the whole motherfuckin' list... I just can't wait to hear the rest!"

"Okay... *deep breath* there's White Chocolate Macadamia Nut, Peanut Butter..... *pause*..... Oatmeal Raisin ..... *pause*..... Chocolate Chocolate-Chip and Carnival. And there's also an assortment box of muffins."

"What the fuck kind'a cookie is 'Carnival'?"

"I don't know, they look okay, though. Do you want me to order the Carnival ones?"

"No. But I want you to order the Oatmeal Raisin ones..."


*silence ensues*


"Do you want me to order the Variety Assortment of Muffins?"

"I don't like muffins..."

"Okay, I'll get us one box of the muffins."

"You're an asshole."

"Which cookies do you want, Gillian???"

"I don't know... I guess just order the White Chocolate Macadamia Nut, Peanut Butter..... and Oatmeal Raisin."

"Okay, so I marked down the muffins, the White Chocolate, the Peanut Butter and the Carnival cookies."

"FUCK YOOOOOUUUUUUU!!!!!" *click* deep breath*



TWO WEEKS LATER:


"H'lloooooooo..."

"Hey... the cookie dough and muffins are in and they accidentally ordered too many boxes of Oatmeal Raisin so I got you two boxes, he's bringing them in to me tomorrow."

*silence*

*click*


Turns out the Oatmeal Raisin Cookies are, in fact, made with DARK raisins and they are pure (and easy) deliciousness... well, easy if you don't count the pure pissed-offness Hell I had to go through in getting them!!

Yay for Oatmeal Raisin Cookies!!!

Assessment Day... I survived.....

This morning was a pretty tough one for me, it meant I had to make yet another admission of weakness and that's something I'm just not good at doing. When it comes to physicality, I've always just been naturally strong and my love of playing sports has always thrived because of the fact that it was always so easy for me. My body took no time in adapting to new training methods with whatever new sport or activity I decided to take on. It was easy, until it wasn't easy anymore.

After almost sixteen months of dealing with struggling just to be able to walk again because of the Peripheral Neuropathy that overtook my legs, I thought I had everything emotionally dealt with even if not fully physically dealt with. I thought I had come to an understanding between my body and my mind. I thought I had come totally to terms with what I'm still going through. And then today... I fell apart.

Appointment after appointment with the Neurologist over these months of struggle has been more than disheartening. I want to get better. I want to walk without having to think about and plan each step I take, I want that ability that I took for granted back. I was willing to work at it, I begged my Neurologist to send me for physical therapy but he kept telling me there was no point, that it wasn't going to help, that I just needed to be patient and give my damaged nerves the time they needed to heal. When I was paralyzed in the hospital he assured me I would be back completely to my old self within eight weeks. Then it was maybe three more months. Then it was maybe twelve months. At my last visit just over a month ago he told me it sometimes takes years for the nerves to heal... if they ever even fully do and then he tried to just pat me on my head and send me on my way once again. But that wasn't quite going to fly with me any longer.

I had gone from this...

That's me (center) in my happiest place, derbying-it-up on the track.
Photo Credit to Frank Caputo

Photo Credit to Frank Caputo

Photo Credit to Frank Caputo

.....to this........... overnight!

Thank goodness my boys were happy to keep
me company while on bedrest!

Now, in this doctors defense, I know he deals with a lot of patients who have horrible stroke and brain injuries and he may just simply not be used to being questioned. This is a man who was truly and utterly flabbergasted when I told him simply, "...Not acceptable....." as he explained to me that my body may now be at its new one-hundred-percent of walking capabilities. The shock on his face as he asked me, "You don't want to accept this? Why?" Did he seriously ask me 'whyyyyy'? And then he told me about one other patient of his who had suffered a stroke and who also refused to admit to his own new 'normal'... All I could do was look at him as tears of fury started to stream down my face. He went on to tell me that I should be happy I got any walking capabilities back, at all and that I should be happy because there are so many people worse off than me. I not only get that, I know that; I am thankful, but I'm not the me I was and that means something, too. I can't not grieve for what I've lost even if it's in fighting to regain the only me I've ever known. One week I was skating and skiing and swimming and dry-land training and the next week I couldn't feel or move my legs. I was assured my body would quickly return to it's former abilities but that didn't happen. I'd been patted on my head and ushered off one time too many and I seriously lost my shit. The tears came hard then. I stopped talking. I stared my daggers of hurt and disappointment directly into that doctors eyes. I shakily stood and walked out of that office, head held high, shoulders back and praying with everything I had to God that he wouldn't  let my wobbly-faltering legs drop me in front of the waiting room filled with people all staring at the crying idiot just trying desperately to get out of there and never look back... even if it meant checking my every hope at the door on my way out.

I thought I was done. I would never go back to see that doctor again, ever!

And then, the following day I received a phone call directly from the doctor. He was suddenly worried because of how I had left the day before and he wanted to check on me. He asked me why I had gotten so upset. I didn't hold back, I let it all out. He had promised me I would return to my healthy self and I had believed him. He had told me to just wait and I had waited. He told me it wasn't a big deal and it would be over with soon and I had settled for his word to be truth. And then, months after all his prior assurances,  he had told me that this might actually be my new best-I'm-going-to-ever-be?? "I'm not okay with that," I told him with new tears starting, my voice cracking in trying to hold back the sobs that threatened, "how can you possibly expect me to just want to lay down and say I'm done and fine with being trapped at home with no semblance of independence? I need to be confident in walking. I need to be confident in me and you're telling me I have to just settle when you haven't even let me try physical therapy. You haven't even let me try to help myself and take part in my own healing fight. You didn't know it would last this long so how can you possibly know what therapies might or might not work? You don't know why this happened to me so how can you possibly know that sitting and waiting it out will fix me?? My muscles are so gone now, from doing what you told me, sitting and waiting. My nerves aren't working properly and I don't even know how to begin rebuilding my body. I just need some help and nobody is helping me..."

A few long seconds passed before he answered me... "What if I refer you to the Neuro Therapy Day-Program and we'll see if they can help...?"

Finally, he had heard me... finally..... and hopefully I was not heard too late.

Which brings me back to my assessment appointment this morning. I thought I was ready. I thought I'd already been through the hardest part and that I was moving on toward the actual healing part of my recovery. But when I had to go back to the days when the Neuropathy hit I felt like I was right back there again. Talking about it is so hard for me because it means I have to admit that I am so much less-than now and that I've lost over a whole year to being broken. I had to explain everything that happened and how much of a struggle it still is for me to do even the simplest tasks. It's embarrassing to be seen faltering, it's devastating to be so desperate for help and it's terrifying to think that at forty-three I may just have to deal with trying to fully heal for the rest of my life. I am not willing to live past forty-eight if this is to be the case because it sucks.

Ultimately, I did fall apart and into distraught tears but also did I survive my assessment interview for the Neuro Therapy Day-Program this morning. From here, my assessment will be assessed by a full team of therapists (physical, occupational), doctors and counsellors who will try and figure out which therapy mixture will be most beneficial in helping me to overcome my physical struggles. The process takes a few days but the lady I spoke with today said that this next part will move quickly so we can get working toward my goals of once again finding my way to fully healthy.

I left for my appointment filled with apprehension. I managed through my appointment even though frustrated tears appeared. And I left my appointment filled with hope... real hope that I might just be on my way back to who I really am.

Sometimes, even at rock bottom,  there's still just the tiniest bit of bounce to be found if we just look hard enough to find it..

Happy Adoption Day, Play!!!!!

This is the face that burrowed into my heart,
months before we had ever even met!

Thank you to Play's foster parents, Stacie and Dave, for sharing these pictures
of Play during his family time spent with them!

Play thinks toys are the BEST! He collects and sorts into categories... toys for sleeping with, for eating with or for hiding. Sometimes he has trouble in choosing one or two, instead he just drags one of the baskets so he can 'carry' way more than a few!

Play LOVES to sleep in a mess-of-a-nest,                  

   filled with all the blankies and toys he adores best.

And he LIVES to play tricks on his big brother, Day.....

 

.....like hiding his very favourite Chipmunk Log toy!

 

.....and like 'borrowing' his favourite sunspot    

cushion to make his forts.

We've shared a whole entire year of Holidays...

      Play even helped decorate our Christmas Tree!

 

Making his bed is really hard work, he stacks pillows and mats to squish and comfifyyyy!

The pool table just very well might be, his favourite napping spot of all... it's high and fun and it's cool for the jumpin' lil' rebel Play is. He loves giving his mama good frights with his daredevil jumping delights!

 

Play says car rides and walks are his FAVOURITE,

with his Day, his mom and his dad!            

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Play is huggy and cuddly and snuggly, he loves simply just being adored.

I'm grateful for every single moment we've shared and look forward to so many more!!

 

 

One year ago today, we became a family of four.

This mamas heart is an incredibly full and gratefully blessed one!

 

Happy Adoption Day, Play!!!!!

Our first moments with Play, perfectly and beautifully captured by Foster Mom, Stacie!