Question: "So, what's REALLY going on?"

A friend of mine came to visit a couple of days ago and her 1st question to me was "So, what's REALLY going on?" 

I realized then that my descriptions have been vague as to where I really am in this whole journey and I have thought a lot about how to describe it so that it answers questions others might be having too.

I don't want this post to seem like I have no hope of great miracles and being fully restored, but here's my reality today.

MY REALITY TODAY

I can't stand or walk.

A BUNCH OF EXPLANATION, ETC. (in no particular order!)

- After undergoing the trauma of surgery we were and are so grateful that MOST of my motion has been undamaged.

 My Upper Body:

They biggest issue with my upper body is that the muscles which were cut through for the surgery are still healing and I have a lot of muscle spasms and a lot of pain associated with that part of it.  Time will definitely heal all of that!  Otherwise, I am confident my upper body will become fully functional and as strong as ever.  WOO HOO!  But here's a better explanation of my post-surgery symptoms! 

Left Arm is my strongest all of all 4 of my limbs.
The only real symptom I feel in my left arm is an ever so slight tingling in my fingers.
When they tested my left arm it is still weaker than a normal 29 year old woman's arm, but all of the Physical Therapy and work will cure that in no time.

Right Arm - all of the testing shows that it is about 1/2 as strong as my left arm. 
My finger tips are numb on my right hand, my numbness gets worse from my pointer finger to my pinky...my pinky being the most numb.

My Lower Body:

I cannot feel anything below where my rib cage ends.  I will clarify this below.

Initially the Doctors explain your spinal cord as being broken up into two major functions...1. Sensory (Feel)  and 2. Motor (Motion).  So, when going into surgery I guess I just expected that if sensory was damaged then that was that.  All of your sensory was toast.  Same with Motor.  If I lost Motor function in my arm then my arm was essentially paralyzed.

After surgery Dr. Dailey came out pleased as could be because I was wiggling all of my extremities!  Yeay!  A miracle!  My Motor functions are good! 

The days have gone on and we are much more aware that both Sensory and Motion are much more complex then just turning them off or on.  There are a lot of different functions within both Sensory and Motion. 

So here's where I am with my lower body, Sensory and Motion.

Muscles: My muscles are totally intact!  A huge blessing!  They will be KEY to my successes in the future.  My muscle control is out of whack however.  My legs kind of flop around like a fish out of water and the Physical Therapists are always joking with me when I try to get my leg up because they fling like an out of control sling shot and then I sometimes kick them!  (Accidentally of course!) 

Physical Therapy is teaching me how to slowly focus on controlling my crazy muscles (or lack thereof) and that is one I am confident I will conquer and learn.

Sensory: Okay, so as I said, I cannot feel below my rib cage.  This is true in MOST ways. 

If you were to grab my leg or pat my leg I wouldn't feel it.

If you were to knock on my knees I wouldn't feel it.

If you were to brush your hand up and down my legs I would feel it and it HURTS...it feels like fire rubbing up and down my legs.  Imagine getting clothes and socks on and off...the Burning.

If you were to pinch me I wouldn't feel the pinch but I would feel the burn.

When I put my feet on the ground I can't feel that they are there and I am constantly asking others..."where are my feet?  Are they touching the ground?  Which way are they facing?"

My BIG set back is the part of my sensory that is called Proprioception.

(According to Wikepedia - "It is the sense that indicates whether the body is moving with required effort, as well as where the various parts of the body are located in relation to each other.")

So in my own words here's what lack of Proprioception feels like to me.  When they help me use my muscles on the parallel bars (holding me of course) to stand up I feel like I am levitating and floating I have no idea in space where I am...where my legs are.

Some might lose Proprioception in their ankles, others in their hips...when this happens in one joint it's bit easier to work with Physical Therapy wise and training wise.  Since I have lost this sensation from my rib cage down it means my hips, knees and ankles...everything we use to walk...is lost. 

So, if I were to use my muscles, concentrate really hard where I am placing my body parts and try walking and walk even the tiniest of steps at any given moment my hips, knees or ankles may bend twist, hyper extend or flop out this is extremely dangerous.  I run the risk of, or course, falling, breaking bones, joints, muscle damage, anything. 

There are millions of questions to follow this diagnosis like:
"So will you ever be able to walk again?"
"Will you regain your Proprioception?"
"What do the Doctors say?  What do you they think will happen for you?"
"Do people without Proprioception from the hips down ever learn how to walk again?"
On and On and On and On.

The answers to all of these questions are:
WE DON'T KNOW
Just like when when we asked the Doctor..."what causes these tumors?" and his best answer is "Bad Luck"
Sometimes there are just no answers to our questions. 

We have heard few interesting medical numbers however.  Yesterday I was taught in a class on Spinal Cord injuries most Spinal Cord healing will plateaus or stops after 2 years post injury.  (They have seen it up to 5-10 years but that is rare) 2 years is pretty much the scientific number behind Spinal Cord healing.  This, of course, doesn't mean that's how long it's going to take me to heal completely (I may not ever).  It also doesn't mean that I am not going to heal completely in 6 months (I may).  WE JUST DON'T KNOW.

Here is my motto:
"My reality today is my reality today and I take it day by day."

Yes, it's hard, yes, I cry, yes, I am frustrated beyond belief at times.  But "my reality is my reality and I take it day by day."

I am doing well.  I am okay with this.  I am at peace.  I am a happy person who has SO MUCH TO LIVE FOR and I am not upset that this has happened to me.  Just because I can't walk doesn't change me. I am okay.  It is going to be a major adjustment and we have a lot of work to do!  It's going to be HARD.  I will continue to need the amazing support and encouragement that has been coming since tumor diagnosis day.

I have new goals already.  I love triathlons and, who knows, maybe I'll do one next year! ...but my reality is my reality and I CAN SWIM!  So, I am already looking forward to that and challenging myself there!  I can still do SO many things physically!  My upper body strength is going to be AWESOME!

Other doses of my new reality are:

- Our house has to undergo some pretty good changes and adjustments to be able to bring me home safely, not to mention my cupboards up high!  Total downward shifting!

- I've been told that after Spinal Cord injuries like mine they will take away my Driver's License for a year.  HOLY COW?  Even with a car that has hand controls for gas and breaks.  I am NOT A HOME BODY.  I am get out of the house person.  That's going to be huge challenge for me.

- My sweet husband, family and I will be figuring this out step by step and it will be very challenging.  Just our new daily life.  My husband and family need just as much support, if not more, than I do.

- There are an unbelievable amount of logistics to work through just make this work (i.e. insurance -what's paid for what's not, a good Physical Therapy place for me when I get home, is the mini-van our best choice for a car and on an on...)

- Because I have a baby and young children my slick little wheelchair that I can get around in really well will not work so well when I am trying to carry Levi around the house, so they say I'll need a Power Chair too so I can use one hand to control corners and not drop him.  Crazy. 

SO MANY QUESTIONS, some can be answered and others not!

I hope this has helped.  Sorry if any of my grammar or spelling makes this hard to understand.

Today is going to be a good day!  I take it day by day and I am happy!