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