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

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

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

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