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

Sorry for the Silence

Loyal readers,

I apologize for the long silence. Since I have been cleared to drive, I haven't really sat still for more than a few minutes. In the evenings, I am still tired but every day, I am a little less exhausted.

Things with the foot are going well. Once a week for the last four weeks, I have been going to physical therapy. The range of motion and the strength have greatly improved. I will go to the doctor for a follow up on Friday, July 10.

Thank you all for reading and sticking with me. I will try to be better about writing, even if it isn't about my foot. :)

Thanks you reading and God bless,

Devin

Stay off the Sidewalk!

Two weeks have past since I got the removable walking cast and things have been going well. I have been dealing with a lot of swelling in the evenings but it has been great to be able to walk around independently without using a cane or walker.

As promised by the orthotic technician, I received my new brace yesterday and as you know, with my new brace came the promise and freedom of driving!!! Today was my first official driving day in 3 months and 2 days (not that I was counting)!

It is such a relief to have the freedom of coming and going when I want. Of course, this morning I got ready for work and then sat down to wait for my ride. It took less than a minute for me to realize that I could leave anytime I wanted but I had to laugh at myself.

Thanks 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

On Energy

I had a realization today! Since the surgery, I am always tired. Not just tired, though, exhausted. Everything seems to take so much more energy than it used to. I am talking not just about physical energy, but also emotional energy.


Today, I went to church and was able to walk in without the assistance of the walker (although, fear not, loyal readers, I carried it with me)! I was able to talk to many people. For the first part of the service, I was even strong enough to stand for the hymn and the opening prayers. I was good and stayed put for the Passing of the Peace. (Well, I can't really say I was good. Honestly, I was already too tired to go anywhere.)


When the service was over, I was already beat. Of course, being out of the house for the first time since Thursday at noon, I wasn't going to waste a chance to be out. Court, my chauffeur of the day, and I went to lunch, the produce market and Wal-mart. (Also, many, many, many thanks go to Court for taking out my trash and recycling.) Of course, I fell asleep about 2 seconds after I stretched out on the couch.


What blows me away is that I have been resting for 2 1/2 days, and my reserves are drained in less than a 1/2 hour. I just can't believe that a cast on my foot can wear me out so much. I know that part of the exhaustion is emotional because of the frustration of not being able to do what I used to do so easily. I know that I should be proud of the accomplishments I have made in the last several weeks, but there is so much more I want to do and that I think I should be able to do.

Thank you for reading and God bless,

Devin

My TV Heroes, Part One

Just in case you didn't know, I LOVE watching TV. It doesn't matter if it is a broadcast channel or a DVD, I just enjoy being pulled into a different world for a little while. That is also why I love reading. Most evenings, I struggle with the decision of whether to read or just watch TV.

Recently, I have been thinking about characters and shows that either influence or define me in some way at this time. Two shows, in particular, floated to the top: 1) Buffy the Vampire Slayer and 2) Ugly Betty. While these shows seem to polar opposites, I have come to realize that the main characters are actually quite similar. Both Betty and Buffy represent "girl power." They have the ability to take control of any situation and be comfortable with themselves while doing it.

Because these two characters effect me in different ways, I am going to deal with them in two different entries. First, I will talk about Buffy.

For those of you that are not familiar with Buffy the Vampire Slayer (BtVS), let me give you a quick overview. Buffy Summers starts out the 7-season series as a typical student who has just transferred to Sunnydale High School. Well, I guess "typical" is really not the right word. Buffy has just been expelled from her high school in Los Angeles for burning down the school gym. She did this in the movie "Buffy the Vampire Slayer" to save the prom from vampires. This is really the only link to the 1992 "major motion picture." Buffy is a stereotypical "California-girl"--a blond, petite, cute, popular cheerleader. Of course, she hides a secret identity of the Vampire Slayer, the "Chosen One" who is charged with ridding the world of vampires and demons that threaten humanity. Unlike past Vampire Slayers, Buffy accepts and often relies on the help from friends. Willow, Xander, Giles and Buffy's mother are central to her life and decision making process. Buffy ends several apocalypses, dies twice, and still manages to have a few ill-fated relationships. She broke ground as a female superhero, a woman who does not need to be saved by men.

Buffy has an inner strength and the ability to appear confident in almost any situation. Although Buffy exudes confidence, she struggles with doubt and uncertainty. I think it is this quality that I most connect with. She has the ability to make things in her life seem OK when she clearly feels that things are not OK. Although some people might view confidence and giving confidence to other as a strength, I see this as a weakness that I can empathize with. Buffy spends so much time taking care of others, she often fails to take care of herself. The confidence she puts on for the benefit of others is merely a mask. Because she is responsible for protecting humanity from evil, Buffy often also protects her support system from what she considers "evil" thoughts and feelings. To "protect" her friends, she often runs away (both literally and figuratively).

It is her inner strength that allows her to fight not only vampires and demons, but also her weakness of giving in to self-doubt and fear of hurting others. I think this why I admire Buffy. She struggles with the same doubts and fears that I do.

Buffy considers her friends as one of the most precious gifts in her life and she is fiercely loyal and protective of them. Her loyalty is repaid by her friends risking life and limb for her. Buffy, Willow and Xander are always there for each other, although often they choose to fight their personal demons alone before they turn to each other for help. This is yet another characteristic that I relate with. For me, nothing is more valuable to me than my family and friends. But like Buffy and her friends, I tend to try to stick out difficult situations before I ask for assistance. It helps to know that my friends are as loyal to me as I am to them when I finally seek their help.

Well, I am going to go ahead and post this entry. I have been working on it for about 6 hours over the last month. I really haven't said everything about Buffy and her effect on my life but I think I have given you a hint of her importance to me.

Thanks for reading and God bless,

Devin

The Pins are Out!

The pins that were sticking out of my foot are gone!!!! Yay!

Today was the second official check-up with the foot doctor. Many thanks to Camika for spending part of her day off chauffeuring me to and from appointments!! I was able to look at x-rays of my foot before the pins were removed. To be honest, it looked more like X-Men than the Bionic Woman. I really had no idea how much metal had been residing in my foot for the last 6 weeks.

I cannot report on the removal of the pins because I took off my glasses and closed my eyes for the entire process. A bystander reported that I did very well and was "amazing." It was so nice to receive such support from a stranger.

Overall, the doctor is pleased with my progress. I think that the foot looks pretty hideous (especially around the skin grafts) but I do think that toes are beautifully straight! The doctor placed me in a walking cast with a cast shoe. I haven't actually walked on it yet but I have tried to put some weight on it. The next visit will be in four weeks and will include a new walking boot. After that a brace will be made so I can begin wearing shoes again.

I am still a little disappointed with my progress, although I am right on track with the doctor's original plan. I know that I am hard on myself and have unusually high expectations. I do my best to take each day as it comes and celebrate little victories. Please continue to pray for me to improve my patience and accept life as it is.

Thank you for reading and God bless,

Devin

I Feel Stuck

Loyal readers,

I apologize for not having many entries lately. Work has been going well, but I am often exhausted and just need to veg out and watch TV. Either that or I go to bed insanely early.

To be honest, I feel stuck.

While I know that this foot surgery was a good thing, I occasionally think that I may have made a mistake. I feel so helpless and I am not sure that all that I have been through is going to be worth it in the long run.

Part of me knows that I am in the middle of an life changing experience. When this is over, I will be able to walk more safely and efficiently. I have already learned to let go of control of the little details of my life and my patience has increased exponentially.

But the powerful, doubting part of me, worries about the effectiveness of the surgery. What if I have gone through all of this (despite the positive changes) and I walk worse than before?

I know that this is probably just a touch of depression and please, loyal readers, don't take this entry has as me looking for pity.

Please pray for me as I see the doctor tomorrow for a check-up. I am hoping for good news that will help my attitude turns around.

Thanks once again for reading and for your prayers and support.

God bless,

Devin

I Needed a Break

When I woke this morning, I felt like I had been hit by train (both physically and emotionally). I haven't been sleeping well last few nights due to waking up every couple hours.

Working full-time this week has been great because it keeps me busy and I get out of the house. It has also been harder on me physically than I would like to admit. Although I do my best to keep my foot elevated at work, it still becomes swollen and uncomfortable. When I come home, I do keep my "toes above my nose" but I think after 4 days, the pain and swelling just became too much to reduce overnight.

So, I decided that I needed a break for my foot and for myself. Honestly, I felt bad about abandoning work that needed to be done but I am in the process of learning that taking care of myself is just as important as caring for others. But I will say that I enjoyed my day.

I took 2 naps and slept for an additional 5 hours. The foot is still sore but I think the swelling has gone down. Tomorrow is Saturday, so I will have another day to rest. Hopefully, the foot will continue to heal in the coming days and weeks and my regular schedule will become less taxing.

Thanks for reading and God bless,

Devin

Hi Ho, Hi Ho, It's Back to Work I Go

Well, I survived my first full day back at work with a bit of energy left over. Today was actually easier and less tiring than my half days last week. The pain is completely controllable with only Tylenol. The big problem is that I occasionally forget that my foot is still somewhat sensitive and that it does not like to be run into walls. In the last two days, I have managed to jam my foot into my front door, drop my foot off the wheelchair leg lift, and almost crash the wheelchair in the alley at work.

Overall, I am doing well. The foot is healing and soon, I will be up dancing around!

Thank you for reading and God bless,

Devin

Get Out of Jail Free Card

I went and saw my foot surgeon today for the first official post-op visit. Overall, he is very pleased with the way the foot looks. He looked at my black toes and stated that it was "vascular insult" and that they should continue to heal. The skin grafts are taking well and look like they could have been props in "The Silence of the Lambs." Things are going so well that he doesn't need to see me for 4 weeks!

I was pretty excited about seeing my new and improved foot. My friend Kristy was kind enough to drive me to the doctor appointment and showed true friendship when she agreed to go back to the cast room with me. The cast technician removed the cast and prepared everything for the doctor. After meeting with the doctor, the cast technician began removing the stitches. This is where the trouble began. I was excited and trying to count the stitches as they came out, when suddenly I felt nauseated, dizzy and hot. I looked at Kristy and said "I am not feeling well." Kristy told me to stop looking at my foot and lay back. The technician apologized for not having me laying back in the first place. It took about 20 minutes to remove all the stitches. Every time I raised my head, Kristy yelled "Stop looking!" I was also very nervous every time the doctor and cast technician took my foot out of the cast. Kristy reported that I whimpered, shook and kept saying "they are going to drop my foot." After all of this, I had a beautiful, blue cast applied and Kristy gets to tease me for being a wimp.

The best news is that I am officially released from house arrest and will be returning to work tomorrow!!! This week, I will only be allowed to work half days but starting Monday, I will be back to work full time!! YEA!!!!!!

Thank you for reading and God bless,

Devin

Black Toe Update

Well, my toes are still black. As you know, I went to the emergency room on Sunday. The doctor there stated that he believed the skin around the pins was dying.

Yesterday, I went to see one of the doctors that assisted with my surgery. (My surgeon is out of town this week, of course). After removing my cast, he carefully examined my toes. I learned that all 4 toes (not the big toe) has some blackness around the side and pads. The area around the toenails is not affected. He thinks the problem has to do with the fact that my toes were so clawed. When the surgeon straighten them out, the veins did not react well. There is no problem with circulation, so my toes will not be falling off.

Unfortunately, the doctor would not remove the stitches, but I did get a beautiful new blue cast. I will see the surgeon on Monday, March 23. The other bad news was that I am officially grounded. My plan to go back to work tomorrow has been thwarted. I am to keep my foot elevated at all times. This means no shopping, no work, no church. I am pretty upset by this because I have been looking forward to returning to a regular schedule. But on the good side, I will have at least 3 more days of Dr. Phil, People's Court and Judge Judy!!

Thank you for reading and God bless,

Devin

Bad Night, Bad Day

Just a quick update on my bad night. As I wrote, I had some pain and swelling after my shopping adventure. This morning, I took things nice and easy, just laying around and playing on the computer. Kevin came over after church and hung out for a while. Later, Court and Wyl came by for a visit.

While I was talking to Wyl, Court starting looking at my toes. He stated, "Now, Devin, I don't want to upset you but your toes are black." How do you not get upset when someone tells you that your toes are black? After several cell phone pictures and a call to the on-call doctor, Court, Wyl and I were off to the Barnes Jewish Emergency Room.

The bottom line is that the skin around the pins in my toes is dying. Fortunately, there are no vascular or circulation issues. The doctor advised that I continue to keep my foot elevated and call to schedule an appointment with my doctor tomorrow. This little setback may keep me from work for another day or two but I think it is important to stay safe and healthy.

Thank you for reading and God bless,

Devin

Good Day, Bad Night

Well, after 10 days of house arrest, I got out of the apartment yesterday with the help of my friend, Court. It was a gorgeous Saturday and I felt very fortunate to be able to get out for a while.

First, we went to Target. Court went in search of one of those electric carts the store provides and could not find one. He came back to the van and began to get the wheelchair out when out of the blue, this lady come scooting past us in an electric cart. Well, we just kind of sat there for a moment, amazed at our luck, until she asked if we want to to use the cart. Of course, I jumped at the chance (not literally, the doctor specifically told me no jumping). After we got me all loaded into the cart, off we went for a shopping adventure. Most of the adventure was just learning how to control the electric cart, which ended up making me car sick because of its sensitive control. By the time I got checked out, I was queasy and tired. For those of you who know me well, you are familiar with the fact that I can become quite cranky in stores when I am not feeling well. Coming out of the check out lanes, I had a choice of 2 directions. The first was the more direct route but was crowded with carts and people, not a good choice for a cranky person driving an electric cart. The second choice was clear of people but it obviously was an entrance not an exit. Knowing my mood, Court start toward the second choice and I was happily following him when store security told him that we had to go the other way. I loudly protested, turned around, and briefly aimed my electric cart at the security officer.

After our Target adventure, Court and I went to dinner at a great Mongolian BBQ and then drove around Forest Park, enjoying the weather. While it was nice to go out for a while, it was equally nice to come home. I needed more help getting back into the building than I did when I left but overall, I pleased with my endurance and the lack of pain. . . .that is until bedtime.

My learning point of the day is that feet that have been elevated for 10 days do NOT like to "unelevated," even for a couple hours. My payment for a great afternoon out was an uncomfortable night with a swollen foot. I slept off and on and had to take the heavy-duty pain meds again. There was even a tear-filled phone call to my sister, Erin, in Phoenix, because I could not find a pair of pyjama pants to fit over the cast.

Needless to say, I am taking it easy today. I am very sad to miss church but I am looking forward to going back to work on Wednesday.

Thank you for reading and God bless,

Devin

Random Wednesday Thoughts

--I am still amazed that by doing simple everyday tasks for myself, my confidence and pride in myself just sky rockets. I just cleaned the sandboxes. True, it took over 20 minutes but it is done. YAY!!!!!!


--I am ready to kill some cats! Omega has been eating flowers and then throwing up all over the place. While the physical therapist was here this morning, Omega knocked over the beautiful arrangement that a friend from church sent me, and sent water pouring all over my mail pile! The physical therapist stated that Omega needs to give up eating flowers for Lent. :)


--A list of weird shows I have seen so far while being too drugged or too tired to care:
--"The Rise of the Southern Biscuit"--a history of biscuits and country ham, along with a travelogue of the best biscuits of the South.
--An exercise show (obviously filmed in the '80's) on the Conservative Christian station. (In my defense, the only reason I watched was to figure out how Larry Rice was trying save souls through a woman jumping around in an outfit more appropriate for church, doing exercises more appropriate for physical therapy in a nursing home.)

--I am not missing work as much as I thought I would. This is not saying that I don't miss work, just that I am enjoying my time off watching movies and trashy TV.

--Havin clean hair is almost as confidence-building as being able to do things independently. Thanks, Jackie!!!!

--Blogging is awesome. Thank you so much for continuing to read my random thoughts and for putting up with me!

Thanks for reading and God bless,

Devin

Little accomplishments

On Monday afternoon, I was given clearance from the physical therapist to transfer into my wheelchair from the couch. At first, I was excited just because I was going to be able to sleep in my own bed. The beautiful reality of the situation didn't really hit until Tuesday morning. For the first time in nearly a week, I fell asleep at my usual time (10:30ish) and woke up at a regular time (6:30)! It was so nice to be back on my normal, comfortable schedule.

I transferred into the chair, brushed my teeth and washed my face, got my Diet Pepsi and breakfast and settled on the couch ALL BY MYSELF!!!!! I was amazed by the confidence and happiness completing these routine tasks gave me. The high (not the Percocet high) lasted all day. Although I have only been laid up for a week, time seems to stretch when you are forced to be dependent on others.

One of my characteristics that I am most proud of is my independence. It is also one of the areas that I could most use growth. I would rather try to accomplish a task on my own and fail, than rely on help from others. This fear of dependence on others has placed me in some bad situations where I have been physically and emotionally hurt simply because I prefer to do things without help.

Through this experience of being laid up, I have learned that "can you help me?" does not mean that I am failing. It is still hard to ask for help because I would rather to do things myself. "Yes, I can!" is easier for me to say than "Please help me!" I am not "cured" yet but continue to grow daily, due to the love of friends, helpers, and supporters.

The opposite of independence is NOT dependence, but is assistance and friendship!

Thank your reading and God bless,

Devin

Freedom from the Couch!

I met with the physical therapist today and received great news. I am now allowed to transfer independently from the couch to the wheelchair! For the first night in more than a week, will get to sleep in my own bed tonight. It has been frustrating to be stuck in one room for so long.

The pain is decreasing by the day and I am having to take less pain medications. Boredom is beginning to set in, but with all my wonderful visitors, the days are broken up nicely.

Thank you so much to everyone for all your prayers and support!

Thanks 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

Observations from the couch

For those of you who did not know, I had a 6 hour foot surgery on Tuesday, March 3. I came home yesterday from the hospital and am happily doped up on various pain meds. I will explain more about the surgery in later posts but I wanted to make some observations.

--When I am on pain meds, I cannot remember their names. Last night, I kept telling people I was taking copacetic and hydrox. For those not under the influence, that is Percocet and Oxycodone.

--My cat, Bubba L, ate ribbons off some balloons Michelle was kind enough to bring me. He then threw up pretty green and yellow gunk on the carpet. AND I DON'T CARE!!!

--I am the luckiest person in the world. I want to thank everyone for their prayers and support. I especially want to thank Kev and Penny Karma for bringing me home and all that entailed!! Thank you Michelle for dinner and the balloons. Amanda P., thanks for hanging out and I am so sorry that you are allergic to my house!

Thanks for reading and God bless,

Devin

Power of Words

I put a lot of thought into naming my blog. The first part was easy (although I do need to thank Ellie for changing "right" to "write") but I knew I needed a subtitle. I played with a few ideas and wanted to incorporate what the blog is about. Anything with CMT was out because people would think that it had to with Country Music Television. "Disability Diaries" was in the running for a while. I finally decided that I wanted something relatively shocking.

As my close friends know, I occasionally refer myself to "the cripple." I have noticed how people often react with discomfort and surprise. One co-worker continually tells me that I shouldn't talk like that. I think that she is concerned that I am putting myself down. Honestly, I think that I have dealt with having a disability and the language that surrounds it for so long that many of the words have lost their meaning and their power.

My mother was the first person who taught me about "people first" language. For those who don't know, "people first" language involves referring to people with disabilities instead of disabled people. Basically, it is a way of remembering that someone who has a disability is a person first, that the person defines the disability, not the disability defining the person. For example, a person who cannot see is a person with a visual impairment, not a blind man. I believe strongly in "people first" language and I try my best to always use it but there are times that I fail.

I have heard many variations on disability language. My least favorites over the years are "handi-capable" and "Jerry's Kids." I really can't say I have a favorite but my mom says her favorite is "gimpy." When referring to myself around people I don't know well, I will call myself a person with a disability. I guess I would say that I am sensitive when I hear other people using words referring to another person with a disability, but when people are referring to me, I am OK with most words (except for the 2 listed above).

My basic philosophy about disability language is that words only have the power that you give them. In the Harry Potter series, the wizarding world calls Lord Voldemort "He-Who-Must-Not-Be-Named." Harry sees that by using Voldemort's name, that he retains power that others give him by refusing to name him. It is the same with words like "cripple."

I know this is a somewhat controversial topic. Please participate in the poll found on the left hand side of the page. (So far 77% of My Write Foot readers find the word "cripple" offensive). Also, please feel free to comment.

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