Just an FYI: CMT SUCKS

Yohan’s Foot Surgery- #16

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link:

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link: http://www.cmtausa.org/101tips

updated-fpss

As for Yohan, he’s more or less become a permanent fixture in our dining room. Every once in a while I’ll stroll on by, dust him off, rearrange the furniture and water the plants. In front of his computer screen, he keeps himself busy with grad school applications, gaming, writing projects, gaming, reading, and did I mention gaming? He’d be perfect at that mannequin challenge which has gone viral over the past month or better yet, he might be able to break the Guinness World Record for competitive sitting (72 hours).

yo-dining-roomedit

Looking for Yohan? Look no Further!

The only reason I know he’s still living and breathing is that nasty cough he’s had for the past 30+ days. It almost feels like a game of psychological warfare where he’s trying to make me crack, and all truth be told, he’s succeeded. I’m worn down, my will is broken and I’m more than ready to divulge any and all information I might harbor. Let the interrogation begin!

The last time I checked in, Yohan had been cleared to walk and start PT. His progress has been molasses slow since then. Why? Pressure sores. After a week or two, these sores heal, and as soon as he’s given the green light to resume walking, they break open again. It’s so frustrating!! After surgery and casting, all his hard-earned calluses dropped away, leaving fresh, pink, baby skin. Problem is –  Yohan is 23 years old and he’s totally over the baby skin stage. Like, WAY over.

baby

He’s had a shoe insert made to relieve the force on the pressure spots. And we’ve been back and forth to San Francisco 3 times in the last month to have the orthotic modified, but we are not there yet. Just this morning, that stupid sore reopened, which means one thing: Stay off the foot and get back on crutches. UGGGGGHHHHH.

Yohan will be seeing Dr. Pfeffer next week for a consultation and we’ll go from there. If we can’t take the pressure off that one spot, he may need another procedure on that foot. No way are we delving into the second foot surgery until he is 95% ambulatory with the reconstructed one. We do not know how long that will take and grad school applications have been submitted for a fall 2017 admission.

Yohan does not like surprises. He yearns for certainty and security. We all do. How do you plan your life when you can’t really plan your life? Message from the universe: Shit happens and you just have to go with the flow. You make the best of what you’re given and deal. It’s definitely not optimal, but what choice do you have? CMT sucks.

life

Question: Dealt with foot sores? Share how you managed them!

Phobias: I’ll Tell You Mine, If You Tell Me Yours!

That hairy tarantula crawling around the ranch the other morning would have, by definition, freaked out anyone who suffers from has arachnophobia, a fear of spiders. While it was basking in the sun behind a tire’s worn treads, I so wanted to put it in my palm and pet it, but before I knew it, someone had scooped it up into a bucket and displaced it into a secluded grassy area, away from me and the lethal parking lot.

And come to think of it, one of the last times I impulsively picked up a feral, furry animal, it bit me. Thankfully, that scraggly rat did not have rabies, or I would have been whisked away to the nearest hospital receiving treatment for rabies which, at the time, included 21 injections, with very long needles, into my 10-year-old abdomen.

I am not afraid of 8-legged creatures, but after reading yesterday’s news, I just might reconsider my position. “Invisible Bugs In Kansas City Are Jumping Out of Trees to Bite People, read the headline of the Wall Street Journal.  Apparently, it is oak tree itch mite season in Kansas City, MO and these microscopic arachnids are pouring out of trees and landing on people, making their lives an itchy living hell. Arachnophobes-beware! Don’t hang out under oak trees in Missouri.

mites

Oak Tree Mite

The next news story, Creepy Clown Craze Sweeps the Globe, peaked my interest.  I do not suffer from a fear of clowns (coulrophobia)…yet, but if I keep reading the news, I may have to ask for a lifetime prescription for Valium.

clowns

While we are on the subject of phobias, here is how I addressed my new-found support group of phobic cohorts:  “Hey everyone. My name is Elizabeth and I’m afraid of inclines.” Inclines? Yes, inclines, also referred to as slopes, ramps, hills, gradients, or ascents. “Welcome, Elizabeth,” they all chanted in a monotone kind of way.

There is a word for my malady. It’s called bathmophobia. For over a decade, this phobia has severely limited my ability to function well in this world. I avoid walking on even the gentlest of slopes. I’ll walk backward up a hill, but no way will I attempt to walk forwards. Sounds weird, right? Well, if you’ve ever seen me walking backward up the jetway to the airport terminal, it looks even weirder.  People stare, make jokes, avoid eye contact and get irritated at my slowness.  Generally, I ignore people by pretending to be pulling a very heavy, wheeled carry-on, or feign looking for the rest of my family who has already escaped to the terminal so as not to be associated with me.

20 years of chronic foot pain can mess you up a bit. Over the years my brain has learned to avoid potentially noxious stimulus. Protecting the area of the body that hurts is a normal response, one which is deleterious if left to linger for an extended amount of time. Muscles, tendons, and fascia tighten, and rigidity sets in. My gait has changed. There is little heel to toe motion.  My calves are tight. I’ve been walking as if I had big blocks of ice on my already very large, size 11 feet-bang, bang, bang. You can hear me coming for miles away. And you wonder why you never see me in a dress!

ice

Up until now, I’ve been half-heartedly facing my bathmophobia. Like everything else in my life, if the consequences are not dire, the task or challenge will most likely remain at the bottom of my never-ending list. Here’s the thing – Gilles and I own horses who have to move to a new pasture soon, a pasture where I will be faced with a 6 percent grade incline. Oh my……

A little bit about Athos: He is more canine than equine. Initially, Athos belonged to Yohan who discontinued riding because of CMT-related fatigue and pain. Then, I started looking after him and he quickly became my primary reason to get up early in the morning to walk and exercise.  Athos, lacking the 2 inches necessary to earn the title of horse, is technically a pony (shhhhh, don’t tell him), but he thinks he’s a Clydesdale, or maybe a Great Dane, depending on the day.  I ride Athos too, but standing 5’9” tall, with daddy longlegs limbs, my ice blocks nearly touch the ground when I get on his back. I can almost break with my frozen heels…..no joke!

athos-spider-legs

 

 

He loves kids, and kids love him. He is particularly fond of my 9-year-old “niece”, Bella, and vice versa.

:bella-and-athos

Athos loves performing.  In fact, he’s clicker trained and knows a lot of tricks, from nodding his head, “Yes” to pushing a ball around the arena to picking up sticks and retrieving. Athos will do almost anything for a carrot!

Watch the video below where Bella and Athos are playing!

video-bella

https://www.youtube.com/watch?v=gRWbpvvf0Mg

 

So, I need to get moving in the upward direction. I have my mind set on conquering the 6% grade hill below (it’s steeper than it looks, folks).  It’s become my Everest, my K2, my Annapurna. If I can do this, I can do almost anything I put my mind to.  I’ll keep you posted.

slope

 

PS: And in the meantime, stay away from 8-legged creatures, clowns, and oak trees!

 

Surgery is Imminent

Yohan’s Surgery #1 – Surgery is Imminent
June 20, 2016
The Eve of Surgery

 

His toes are curled, especially the pinky toe which begs attention by standing just that much higher to make wearing any shoe a challenge. His crescent arches make walking a balancing act. His calves are as tight as the string of a bow and his ankles are turning out as the supporting tendons lose their grip. Thick, but hard earned callouses are just a bonus for winning the CMT lottery.

CMT is usually passed down from one generation to the next. It is inherited. Yet, neither my husband nor I have it. Yohan is the first person in our families to have CMT. His CMT is caused by a spontaneous genetic mutation. A mutation that can be passed on to his children, his children’s children, and so on and so forth.

Yohan will have reconstructive foot surgery tomorrow morning at 7:00 am, a surgery which has been planned for a year and scheduled for 3 months.

CMT foot

A few weeks ago, in a moment of sheer fear and anxiety, I clumsily suggested that we might want to get a second opinion on the necessity of surgery, a surgery that was only 3 weeks away.

In shocked disbelief, Yohan blurted out, “Are you expletive kidding me? After choosing to put my life on hold for a year after graduation? After all the in-depth discussions and conversations we’ve had?   No way. I’m resolute in my decision. Now let’s get this over with and put it behind us.”

Enough said. My worry asked the question and the voice of reason responded: the surgery is a go. The reality is that Yohan can no longer run, walk with confidence or stand without pain. It’s time. It’s time for an upgrade that only the hands and skills of a competent orthopedic surgeon like Dr. Pfeffer can offer. After tomorrow’s surgery and a 6-month healing process, Yohan’s calves will relax, his pinky toe will align, his arch will flatten and his tendons will be strengthened. Tomorrow brings the promise of less pain and more stability.

Any surgery is risky. And the recovery for this particular surgery is long and tedious.  But the possibilities of a new tomorrow are endless. So, when anxiety rears its ugly head, I am guided by Yohan’s words: Plan for tomorrow, then live in the now. Our brightest future lies in the sound decisions of today.