Sunday, March 16, 2014

Road Blocks

I never quite know what to say when folks tell me that I am a strong person or that I am an inspiration.  Truthfully, I've known myself for my whole life and do not find myself uniquely strong or inspiring.  Conversely, I tend to find myself more as just plain stubborn and determined, with the necessary thrust of human connection, peppered with a lot of grit and some occasional self-pity (okay, a lot of self-pity lately).  

Yeah, this week has been a rough one.  While I was forewarned to expect a year of frustration after my amputation, I did not expect that I would be this frustrated, confused and down about the whole thing.    It has been challenging to say the least.  

I was really psyched at the beginning of the week to finally be getting my prosthesis....for my "walking day," as it's generally called in the amputee community.   While I knew I would encounter some discomfort and mixed feelings,  I did NOT know that I would be forced to confront the fallout of my multiple traumatic injuries, as well as how they still impact the way in which my body continues to respond.   

One of the symptoms resulting from my pelvic fracture was a peroneal nerve injury.   The peroneal nerve originates at the base of the sacoiliac joint (as part of the sciatic nerve) and runs down the outside of the leg, around the edge of the fibula (outer leg bone), and over the foot, where it ends
between the first and second toe. (see pic at the right).  When I still had my foot, I could touch between my toes and it would be numb there...which was really no big deal, as I got used to it and it really did not affect me much.   I also had, and continue to experience a lingering numbness along the outside of my thigh, which turns into a tingling sensation when I press on the top side of my calf-muscle.   Again, no big deal......that is, unless you're trying to fit a prosthetic socket. 

Earlier this week while my prosthetist and I were trying to work on getting a comfortable fit in my socket, I felt a shooting pain across the outside of my shin.  I pointed to a small lump which seemed to be the culprit.....and was informed that what I have is called a neuroma.     Neuromas can present quite a challenge when fitting a prosthetic socket, as the pressure put upon them when bearing weight can cause significant pain and cramping.   Needless to say, my hopes to be up-and-walking came to a standstill, because at this point the socket is too painful to wear.   On Monday we  are going to start over with a new check-socket and see if it is possible to make a few adjustments to accommodate the neuroma.  If it still continues to be problematic despite multiple attempts at socket corrections, steroid injections can be attempted, as well as surgery to transect and bury the neuroma deeper into the muscle tissue closer to the bone.    Obviously, the last thing I want is another surgery.....so fingers are crossed that we find a better solution.  

I guess that  this is where I am humbled and reminded that the human body has its own logic, and no sheer force of will can change that.  I have been pretty concerned and worried....as I've obviously been looking forward to getting my life back.   It is sometimes hard to trust when one experiences setback after setback, or to catastrophize and think that I'll never be walking again.   So I try to get scrappy and educate myself about all of my options, as well as connect with others who share similar struggles.   Still, there are days where it is just plain hard. 

Still Searching for "Normal"

I think the most difficult part of this experience is the length of time it is taking to regain some sense of normalcy.   I want so much to be in a good head-space for my kids and family, but find myself feeling sad as I sit back and watch them participating in the fun stuff I would love to be doing.   I also find that my patience is lacking, as well as the joy I used to feel on a regular basis as a very active person.  I guess my energy tank is running on low, and the long hard winter has compounded the arduousness of the journey.    Usually at this time of the year we would be making plans to camp, hike and travel....as the snow melts away and we prepare for increased time spent outdoors.  Unfortunately at this juncture we are unable to plan with much certainty, which is tough.    Luckily, my tough German temperament pushes me onward....as I kick myself in the butt to stay as active as I can be, and surrounded by good people.  I try to find joy in the small things, such as richness of conversation with friends, holding my kids on my lap, watching the birds come to our feeder, getting in a good swim, or listening to my cat purr as I scratch him under the chin.  (I do this to my husband too sometimes, but he doesn't purr....).

Somewhere in the back of my mind I know that this will not last forever.  And I look around to see all that I have been blessed with.  I am thankful that through all of this, my children are learning how to be helpful, how to be compassionate, and how to press on through difficulty.   Of course, they are also learning new skills, such as how to throw their snow-covered clothes into the dryer and how to empty the dishwasher!   I look forward to some exciting goals on the horizon.....and try to embrace the understanding that these things happen in their own time, which may be outside of my
control.  (I can be so impatient!)

....and we continue taking things one. day. at. a. time.    

Wednesday, March 12, 2014

Live Woman Walkin' (well, sort of)

Today I received my check socket and took my first steps in a prosthesis.   All of the amputees I've talked to have mentioned the fitting process as being the most frustrating part of the experience.   We spent three hours working on trying to get the fit right.....and this process is likely to continue for several months.
 
At this point I am able to walk for a very short while, and still have some pain in the anterior part of my tibia (bottom of my shin bone).  We will continue to work on this (ie., I will communicate my experience w/ my prosthetist and he will make needed changes).

  video

(The video above was taken after some modifications, including a change-out of the foot.)
I guess this is how it goes....one step at a time.  

 
Patience grasshopper.............


Monday, March 10, 2014

A Day In The Life: Update #4

Haven't updated in a while.....seems I've had a case of good old-fashion writer's block.  There's probably a good reason behind that.   I've been doing a lot of hanging out and waiting, which honestly has been pretty boring.   Admittedly, life has been quite different being Madame Gimpsalot...sans leg until hopefully later this week....

...Hence, I thought I'd write about a typical "day in the life."  

As I am awakened at 7:00, I am lucky to have my Prince Charming bring a cup of coffee to my bedside.   Interestingly, I still dream that I've got all limbs intact and am running around like a kid, so the first brief moments after awakening can be somewhat of a reality-check.   It takes a good fifteen minutes for my coffee to kick-in which is pretty necessary as my morning jump-start.   Unfortunately I can't hop around with my hot coffee in-hand, so after I slurp it down, I ask one of my little hoodlums to bring my cup down to the kitchen...where I get on my knee scooter to ready the kids for school while gulping down cup #2.

While the knee scooter is better than crutches, it is still a pain.  I've run over my cats' tails more than once, as well as my kids' backpacks, jackets and mittens as they lay scattered across the kitchen floor.   And forget about doing anything quickly.....something as easy as last-minute homework folder retrieval from the living room couch can be quite an ordeal.  

Initially I used crutches up and down the stairs, but now I four-wheel it.  Much quicker, although I've earned a seemingly permanent rug burn on my right knee as a result.   Getting around in this way is strangely akin to climbing, believe it or not, as I continuously scan my environment for "holds" to grab on to to transition from standing to kneeling or sitting, and vice-versa. 

Maybe no one will notice???
I need to admit it is very tempting to avoid going out in public sans-leg.    The attention is weird and I prefer to avoid it.  However, those who know me well know how much I abhor being inactive.   I've needed to swallow my pride, suck-it-up and get my gimpy butt to the gym...regardless of how much I hate the gawking.  Without fail, I always feel so much more alive after pushing myself and getting in a good swim (...and I'm slowly figuring out how not to swim in circles!  :) ).       

Of course, people are very curious and full of questions. The hardest ones to answer are probably the questions where folks don't know my history but are really curious.   Those obviously take a longer time to answer and I need to do a fair amount of educating.   Heck, I never knew that some fractured bones don't heal well, so how would other people know?   Most of us believe that bones heal by simply slapping on a cast for a while....and suddenly voila, all better, right? 

....And while I'm okay with this amputation thing (really...it is so much easier than hauling around a painful, useless ankle), I find a lot of people are sad and perplexed about it.  Oddly, I need to do a fair amount of consoling to those who don't understand how a person would "choose" amputation.....and usually this is done by raving about the advances in the prosthetic industry.  Pointing to examples of accomplished amputee athletes usually does the trick.   

Speaking of prosthetics, my fingers are crossed that this Wednesday will be my "walking day."  I was casted last Friday for the fabrication of my check-socket (a temporary socket which can be modified as my limb changes shape and / or atrophies).  I have a fair amount of volume in my residual limb (the PC version of "stump," although most amputees are quite comfortable w/ the word.   I find "stump" to be a tad masculine sounding, and prefer to use stumpette.  Lol...  :) ).   The remaining musculature in the distal end tends to be larger than is typical, making"doffing" (taking off of) the prosthesis a potential challenge.  We will know on Wednesday if this is an issue or not.  If it is, my prosthetist has an idea or two.....but that might delay things a bit. 
 
I've known from the advice of other amputees to expect lots of frustrations and challenges, so this is not surprising.   Of course, we always hope to be surprised that things go more smoothly than planned, don't we?    
 
I continue keep in mind that this experience beats additional trial-and-error surgeries, and that I am still much closer to being able to run around with my kids than I would have been, had I continued to keep trying to fix the dang thing.   With the weather steadily improving, I am still hopeful that I'll be up and walking by the end of the month.  (I'll need to put running off for a bit....just trying to be realistic.)
 
About a year ago I read the book Daring Greatly, by Brene' Brown, which is based on the following quote from Theodore Roosevelt's speech:
 
THE MAN IN THE ARENA Exerpt from "Citizenship In A Republic" delivered at the Sorbonne, in Paris, France on April 23, 1910. 
It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better.  
The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again,  
because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions;  
who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly.
In truth, it has felt like nearly 2 1/2 years of daring greatly, with a rollercoaster of surgeries and recoveries behind me.   It has been so tempting to look for excuses (It's too cold, I don't want people to stare,  I'm too tired, etc.), but I have tried to keep my head held high and continue forging on...sometimes, while gritting my teeth or ending the day in a lump of exhaustion. 

At present, I'm feeling oddly like a penned-up horse waiting for the gates to open.   It has been a very, very long time since I have walked or run without significant pain and effort.   I am excited to move into this next chapter, as the snow melts away and we begin to embrace growth and new life......   I'm more than ready.

BRING IT ON!