Why Am I So Worn Out?

Happy 2010!

I apologize for the long silence. All has been going well in my world. It has been a little over a year since the foor surgery that changed my life.

I celebrated the one year anniversary of the foot surgery by giving up the wheelchair everyday home use. People have been noticing and commenting on how much better I am walking.

As usual, when things are going well, I tend to forget that I have CMT. I know it is weird to forget because I wear braces everyday and am more than a little wobbly on the best of days. I guess it may be because I have been living with CMT for so long that it is just part of life.

So when I do "regular" things and get exhausted, I get very frustrated. For example, this weekend, Scott and I spent a lovely afternoon at the St. Louis Zoo. We were able to see most of the animals we wanted and walked our little feet off in the process. After a couple of hours, we managed to drag ourselves back to the car. I was tired and sore so Scott brought me home and filled me with ibuprofen.

The next morning, I woke up and could not move. Not only did my legs and feet hurt, but every muscle in my body ached. I slept 12 hours on Saturday night and Sunday night, with 3 hour naps on Sunday and Monday, and I am still exhausted. The muscle aches are slightly better and the foot is no longer swollen, but I am just so tired.

I wish I could do simple things, like enjoying a day in the park, without knowing that I will have to pay in some way. I want to not have to worry about the consequences of spending a nice afternoon outside. I worry that soon doing everyday activities will become too much to handle. Not sure what to do except just accept it and look forward to more naps!

Thanks for reading and God bless,

Devin

My (Famous) Right Foot

Today I went to the neurologist for my annual check-up. This was my first follow-up since the foot surgery. Actually, it had been over a year and a half since my last visit and I had not consulted the neurologist before having the surgery.

The doctor was impressed with the results of the surgery. When he asked me what procedures I had done, I told him that I had 11 different procedures. He answered that he didn't know that there was 11 procedures that could be done on the foot. :)

It was very exciting to tell the doctor about the return of feeling in my feet and legs. He is not sure why it happened but is going to do some research. I showed him the "before" pictures of my foot and he said "oh, by the way, your foot is famous." He went online and showed me a picture he had taken at our last visit. You can find it at http://neuromuscular.wustl.edu/time/hmsn.html#II and here it is:

The foot on top is a picture of a "classic" CMT foot drawn by Dr. Duschenne in the late 1800's. On the bottom is my foot. (BTW, I know it looks like my left foot but it is actually my right foot. The doctor did photoshop or something to it.)

The other exciting thing that happened was that the doctor is doing some innovative research on CMT. He is taking skin samples and (through a long process) growing them into stem cells and neurons. By doing this, he will be able look directly at the neuron and see how it is functioning (or not). I agree to let him take a skin core off my butt (he said it was my hip but I just know that it is my butt that hurts) and he will grow it into 10 different samples to be tested. I am so grateful that I am able to participate in this important research and I will gladly put up with a tender rear if it means that someone down the road can be cured from CMT.

Thanks for reading and God bless,

Devin

Step By Step

Five months have past since my foot reconstruction surgery and the recovery continues.

My last doctor's visit in July went very well. He said that my progress was "amazing." We discussed my goals of walking without the support of braces and wearing "pretty shoes." The doctor stated that I should be able to walk occasionally without the braces within a year to 18 months.

Going into the surgery, I had a schedule.
Getting around the house on a walker--day after surgery
Back to work--2 weeks after surgery
Driving--Mid-May
Wearing pretty shoes--end of the summer

So, when the doctor told me that I wouldn't be walking in my pretty shoes for at least another year, I was shocked. For goodness sake, I have a schedule!! (Not that I have been able to keep any of the other timelines.) I looked at the doctor and simply told him that I had a schedule and his timeline didn't suit mine. When I told the doctor that I planned to be able to walk with braces by the end of the summer, he said "You need to be a little more realistic." He went on to explain that although he rebuild the structure of my foot, that I still have the underlaying problem of the CMT is still there.

Somehow, through all the months of recovery, I had forgotten about the CMT. The focus became healing the foot. In my mind, I equated repaired foot with the cure for everything. Realism had flown out the window.

So, here I am, going to physical therapy dutifully every 2 weeks. The foot is becoming stronger and I can walk without the brace for a few minutes at a time. The physical therapist is pleased with my progress and is happy that I am using only a cane for support.

I will continue to practice walking at home and I am willing to amend my "pretty shoe" deadline to Christmas!

Step by step my recovery continues!

Thank you for reading and God bless,

Devin

Miracles

Well, today was my first full day without a cast. Of course, I did have a huge walking boot but I did have the freedom of coming home and taking it off.

After a 6-hour surgery and 11 weeks in a cast, I have no idea what my "new" foot is like. Last night, I washed my foot and took some time to get reacquainted with my foot. Overall, the foot is utterly amazing. The toes, which were once like claws, are straight and separate. The scars are flat and completely healed. The skin grafts are not as "Silence of the Lamb"-ish as they first appeared. If you can't tell, I am thrilled with the outcomes.

For most of my life, I have had little or no feeling in my feet. Charcot-Marie-Tooth is a neurological condition that falls into the category of a peripheral neuropathy. Basically, it means that the nerves that are farthest from the spinal cord are damaged and do not receive from or send messages to the brain. Below my knee, I have little to no feeling. I wouldn't even say that there is numbness. There is just nothing. Except now.

Suddenly, I can feel the temperature of water dripping on my foot. I could feel the doctor debriding my toes. When I put my foot on the carpet, I can feel its texture. This is mind blowing to me. I expected straight toes, but feeling in my foot? I asked the doctor about this strange side effect. He stated that the surgery, technically, could not have done anything to restore the functioning of damaged nerves. But, he also reported that he had other patients had regained feeling in feet with previous neuropathies.

I never imagined that anything like this would even ever be possible. Who knows if this will last, but I am enjoying each drop of water, each loop of carpet, each twinge of pain. I am not taking this amazing gift for granted and I pray that you, loyal reader, do not overlook the everyday miracles in your life.

Thank you for reading and God bless!

Devin

Steps toward freedom

Today was my 11-week check up on the foot. And things are going better then originally expected.

I got to the appointment a little early and I was able to get back into the cast room almost immediately. The cast tech took off the front half the cast and wrapped the back half back together with ace bandages. Next, I needed to walk to across the hallway to get some x-rays. Hence, the first problem. I jumped off the table and took one step. . . and almost fell on my face. Apparently, I had depended more on the front half of the cast than I realized. Needless to say and I grabbed on to the table and refused to move! So I still need to go to radiology and for some strange reason the orthopedic department did not have a wheelchair. There was a walker that I could borrow. So slowly, heel-step by heel-step, I made it over to radiology.

Once in radiology, another problem arose. The tech asked if I had ever stood on my foot without the cast. Thinking "that's a strange question being that I have been in a cast for 11 weeks," I answered in the negative. The tech then asked "You mean, they just took the cast off and sent you over here without seeing if you can stand up? I am an x-ray tech, not a physical therapist!" Now, I am confused. The tech takes me to the room and goes to speak with her supervisor. The doctor had asked for a weight bearing x-ray without taking into account that I had not stood without cast support for nearly 3 months. The supervisor came to talk to me and I told her that I thought I could do it if I had something to hold on to. The tech said that she was not comfortable with that and that she didn't want to work with me. While the supervisor went to talk to the doctor, 2 other techs came in to work with me. The doctor agreed to do a non-weight bearing x-ray and everything went smoothly.

So, back I go to the cast room, and see the doctor. The doctor is extremely pleased with the foot. He debrided the toes, which are now a beautiful pink and not a dreadful black. He had me wiggle my foot, which I kept doing because I was so excited. The toes can't wiggle yet, but I am taking everything one step at a time.

The surprise of the day was that the doctor brought the brace guy with him to make the mold for the new brace. I was not expecting this until my June visit. The brace will be ready in 1 or 2 weeks. This means that as soon as I have the brace, I can drive!!! YAY!!! In the meantime, I have a walking boot. I will have physical therapy 1 to 2 times a week. I do have to wear a splint at night so that I will not damage the tendon transfers.

Thank you for all the support and prayers over the last several weeks. The end is not in sight but it is closer than ever.

Thank you for reading and God bless!

Devin

The Bionic RevDev!

Thank you for your continued prayers. I am now feeling more alert and lucid (at least for the moment). I am going to take a chance to begin to explain and my foot surgery and a little bit of what it means.

Over the last 37 years, Charcot-Marie-Tooth has caused my foot to look more like a bird's claw than a human foot. The toes were contracted to the point that they did not touch the floor. When I walked, my ankle would turn so that I was walking on the outside of my foot. Add to that high arches and weak ankles, you can begin to get the picture. Kristy described my foot as walking on a balled up fist. My foot size went from about 10 to a 7 1/2.

My two-sized feet!

Claw foot

On Tuesday, March 3, I had a 6-hour surgery to reverse deformities in my right foot caused by CMT. Among the procedures done were tendon transfers on all the toes (to straighten them out and give them more strength), removing some bone, add some plates and pins and release some muscles. Going in to this surgery, I joked that I was becoming the Bionic Woman. Little did I know that I would really become a little bionic. When the doctor got into my foot, he realized that because the skin around my toes was so tight, that he would have to use 2 half-dollar sized synthetic skin grafts. I am amazed at the medical technology and knowledge that is now available.

Now, as I sit on my couch, at the beginning of the healing process, I have been forced to face my mobility issues head on. Right now, I am dealing with the frustration that I am not able to get around as well I think I should at this point. My goal at this point is to allow myself to be safe and heal. I am working hard at not pushing myself to hard and to try to do things that I cannot.

I have a picture that Kev took of my foot that I would be happy to send you if anyone is interested. Also, a huge thank you to Penny Karma for the beautiful toe cozy.

Thanks for reading and God bless,

Devin

My Right Foot (and My Left One Too)

Well, here goes nothing!

Welcome to "My Write Foot." This is going to be my forum to talk openly about life (in general) and my life with a disability (specifically). WARNING: I am going to be completely and brutally honest. Sometimes, I will say things that are contradictory. I am sure that I may reveal things that you don't know about me. My goal of this blog is to simply have a place where I can share my thoughts and feelings and maybe get to know myself better. Please feel free to comment as the spirit moves you.

I was diagnosed with Charcot-Marie-Tooth Disorder (CMT) at the age of 3. CMT is a slowly progressive, nueromuscular disease that affects the peripheral muscles, especially the feet, legs and hands. For me, CMT affects primarily my feet and legs, causing foot drop, high arches, hammer toes and a unusual gait. Due to muscle deterioration and wasting, I have worn Ankle-Foot-Orthotics (AFO's or braces) on both legs for about 6 years. CMT is an inherited condition and does not have a "cure." In the past 10 years, genetic testing has becoming available for many types of CMT.

Because I was diagnosed at such a young age, I really don't really remember life without CMT. As a kid, I fell down a lot and always had scrapes and bruises on my knees and elbows. It didn't take much to make me fall either. I often say that an invisible crack can make me fall. Due to all the falls and foot deformities, I had more than my fair share of twisted and sprained ankles. In elementary school, I had surgeries to lower my arches, which improved my mobility greatly but still did not make me the most graceful creature on the planet. I fell then and I still fall now. The difference is that I have made an art form out of falling (or keeping myself from falling.) I can pull myself out of almost any near fall but I realize that it is a sight to see. More often than not, I am a windmill of arms and legs going in all directions. After I have come to a stop (either achieving some sort of balance or ending up in a pile on the ground), I always throw my arms up in the air and yell "Tah-Dah!!!" If my disability has taught me nothing else, I have learned that I must be able to laugh at myself. Otherwise, all I could do is cry and whine about my body that does do what I want it to.

Well, I have so much to say, but I think I will end for now. I certainly don't want to use up all the stuff in my head for the first entry!

Thank you for reading this far and God bless!

Devin