Friday, March 11, 2016

My first "AMP"uversery

When Dr. Mullis came in the exam room to deliver the news,it was halfway expected for us to learn that the only solution to cure me of the infection ravaging my body was to remove my left foot. I had been fighting MRSA for over 8 months. I would start to get it under control and it would bloom back out and each time it took a little more of me. I was sick all the time, I couldn't eat, had a horrible time sleeping and I was being a jerk to everyone around me. I was simply miserable. I was open for any solution.

Most of the people reading this blog regularly have been touched by amputation in some manner. Either they have an amputation or have a loved one that is either considering it, or recently has had one. I had been looking into what I needed to know about being an amputee for several weeks. It wasn't as hopeless as it sounds. I was scared by some of the statistics that I had read, about phantom pain, the inability to tolerate the prosthesis, or spiralling depression.I had a background in Physical Therapy (30 years ago) and had worked as a physical therapy assistant in the service. I was also a combat medic and had enough knowledge to know that the only way to be successful was to hang a positive face on it and get through it.

A year ago today, I was wheeled into the operating room under the care of Dr Mullis. He had been my wound care doctor and had preformed several surgical debriedments on me in the past. He is a well known and respected orthopedic surgeon. We had talked about the amputation and he told me that he would only take the leg up as far as he had to to get all of the infected tissue out. Originally he thought that he could take it about 2-3 inches above the ankle but once I was under he had to remove about 5 more inches. A full trans tibial a little higher than mid shaft and left me with a good residual limb. I was released on Friday, but consigned to a rehab hospital across the street. I was one of the youngest people in there. I was told it would only be for the weekend by the nurses at the main hospital, but he rehab hospital doctor had other ideas. He wanted to keep me for a few weeks. I pushed the program and kept after everyone until they finally kicked me out.

It has been a crazy year. Learning new things every day. Talking with others and learning the things I need to know to succeed. The best part about it is finding like minded people to whom I can connect. People that care about others and want to make sure that we all get a chance to experience the freedom that we deserve. People like Penny Chenowith @amputeemommy and Adrianne Haslet-Davis @adrianneHD ,  The wonderful people at Ability Dynamics, the Amputee Coalition and Amplitude Magazine, and so many others that I cannot name them all here. I have joined a community with 2 million brothers and sisters that share a commonality, we are different. I may not have chosen this life willingly but will always feel that I was meant to be here. I am strong and life is good. I am an amputee but that does not define who I have to be, rather it is a tool I can use to connect with others, to show people that having a handicap and being handicapped are not the same thing. The US Marine Corps has a principal that I believe every amputee has to hear and apply to their lives: "Adapt and Overcome"

I will adapt. I will overcome. Will you accompany me on this journey and help inspire people to be all they can be? I hope so.

Wednesday, March 9, 2016

Suspension Sleeve issues

I am an active amputee. Being close to 250 pounds and 6 foot 6 inches, when I do something, its usually not by halves. I get after things. One issue that I had was that every time I would kneel down to do anything, I would either bruise or cut my suspension sleeve. Carbon fiber is rather unforgiving and is pretty tough on stuff. Even all sanded down and polished up when you put that much weight on it it will cut through the gel of a liner like scissors,. Most of you know the woes of having your suspension sleeve loose its airtight seal. No matter how you adjust and move it around, you still get a little pistoning in your socket. Ouch.

My prosthestis, John, decided that he would try a different type of suspension sleeve for me. It is an Ottobock sleeve and the gel on it is reinforced. The cloth on the outside is made of a sturdier material and overall it is much more resistant to being cut. The only drawback? Contact dermatitis. Yuck!

I take extraordinary care of my residual limb. I keep it clean, I check it every day for rub spots and pressure marks and every thing a good amputee is supposed to do, but all of a sudden I had a huge red welt all the way around my leg. It itched and burned and broke the skin out. I was absolutely miserable. I figured I  would just have to go back to my old sleeve and be a little less 'active' or find some work around to keep the sleeve's integrity intact..

I changed one little thing about my routine before I gave up entirely. I had been using a special lotion on my leg, one that advertises that it is special for diabetics. Yes it is a national brand and I don't want to call them out. It has aluminum oxide as one of the active ingredients. I decided to try a more natural product. I decided to use a good Shea butter lotion. Bath and Body Works sells a product called True Blue™. It is a thick shea butter lotion that has a pleasant smell, Using this every night for about a week, the irritation subsided and I was able to wear the new liner.

I know a lot of people have issues with skin irritation, and as always I refer you to your own physician for direct medical advice. I tend to try new things and am willing to suffer the consequences if I make the wrong choice. Understand that if you do try this lotion, it is one of those things that takes a little while to kick in, and all bodies are different. I have a feeling that the other lotion's ingredients were the root cause of my problem and not the liner. Finding this product has allowed me to enjoy just a little more freedom,

Friday, February 5, 2016

Get busy LIVING!

Anyone that has followed my blog knows that I strongly believe that an amputee must remain active. This does not mean hitting the gym 7 days a week or spending 3 or 4 hours working out every day. It means getting out and doing something. I have been told that walking isn't exercise, that in order to benefit you have to raise your heart rate more than walking can bring on. I guess some people (trainers included) do not understand how difficult walking can be to the new amputee. Most of us have spent a period of time prior to the amputation in a very sedentary state. A radical transition into heavy exercise would be detrimental. You should always consult with your physician prior to beginning any new routine to make sure that your body is healthy enough to make the transition.

I began with walking. At first it was laps around the living room until my wife was ready to strangle me in my sleep. Then I began walking to the end of our street, about 2 blocks with a slight grade (up to start and down coming back home). I transitioned pretty quickly, even though I was having trouble managing my volume. I also sweated like a pig. Keeping a seal on my sleeve was difficult, and I had to carry around a towel everywhere I went. I transitioned to the walking path at our neighborhood sports park. It is a 1 km track that circles the baseball/softball parks. I started with 1 km and progressed on up to 5 km. I walked as fast as I could manage and always was playing against the clock. The foot I had was hydraulic and kept me from running.

At this point I had had my leg for 4 months. I was fitted for a new socket that was smaller than the 5 gallon bucket I was in to start. The fit was awesome, and my insurance had finally approved a Rush™ Foot. This transition was amazing to me. The Rush™ Foot allowed me to jog. Don't get me wrong, I had been sedentary for about 4 years prior to my amputation, other than swimming I had got little exercise. I had to teach myself to run again. It was hard and it hurt, a lot. I started out on the treadmill at work. Clumpity Stomp... and eventually I could run about a mile. It has not been comfortable, as I am still too heavy to do it very long, but I keep trying.

I was also able to ride my bicycle again. This opened a whole bunch of opportunity. I happen to live in one of the most incredible bike friendly cities in America. We have miles upon miles of dedicated trails to allow people to bike and walk all over. The Northwest Arkansas Greenway is an incredible system of trails that stretch from Greenland Arkansas up to Bentonville Arkansas, a distance of about 45 miles. The trails connect different areas and each segment has it's own character. Just getting out there is fantastic. Fresh air and a fresh perspective is an incredible way to relieve stress and worry.

I have people comment that they are proud of me that I didn't just knuckle under and say "Woe is me", I did not sit back and cry about my situation. I read once that there are basically two types of people (societies) in the world. People who live, and people that die. In all of my experience, I have never found this to be inaccurate, everyone is capable of being in either group they choose to be in. Notice I said choose. You get to make that choice. As 'Red' Redding said in the Shawshank Redemption, "Get busy living or get busy dying" Always choose to do everything that you can, do not surrender quietly. Becoming active is the key to improving the situation.

Get up, get out and do something today!

Monday, February 1, 2016

On Soap and Soapboxes

I haven't posted in quite a while and I should have warned everyone about how my December and January would be. I  have worked in the transportation industry for the last 27 years. Traditionally the weeks leading up to and following the Christmas holiday are always a crazy time for us. Retailers demanding their product in time to sell it for the holiday, then processing all the returns to the vendors, coupled with trying to meet the needs of our drivers work-life balance takes a lot of time and energy. I had little time to have any thoughts, much less post anything that made sense. Thankfully, this rush has finally leveled off and I can return to some sense of normalcy.

I want to touch base on something that is very basic that every amputee has to know. How to take care of their residual limb. This is a very touchy subject for some people, when it should be something that is taught from the beginning. A large amount of issues could be solved by good hygiene, yet many amputees choose not to follow simple rules about keeping clean. I admit, since my infection with MRSA that began my experience, I have become a bit of a germaphobe. I am forever marked as someone who is susceptible to another MRSA infection. I never want to experience that again, if I can help it. So I follow some simple rules about keeping my body clear of issues.

First, I make sure I bathe myself at least once a day. I know it is a hassle, having to use a shower chair and having to make sure that everything is dry and clean afterwards. It generates more laundry, uses more water and everything. During the process, I make sure that I clean my liner and my suction sleeve. I change out my stump socks and put them in the laundry. I use a product that I have really come to believe is one of the best soaps on the market. HIBICLENS®  From their website, they claim the product is an antimicrobial, antiseptic skin cleanser that can be part of an effective defense for preventing the spread of MRSA.and other staph infections.I have found that it is very effective at keeping any infections from becoming worse. As a guy getting up there in age, I grow hair like a woolly mammoth. Having a sweaty liner against my skin 16-18 hours every day does wonders to create ingrown hairs. This can allow for skin breaks and eruptions that can create portals into my body for creepy crawly bugs like MRSA. I have found that regular waxing of certain problem areas keeps this problem at bay, but daily use of Hibiclens® helps keep me from getting an infection. An added benefit is that it retards growth of bacteria for up to six hours, reducing the smell when I remove my liner. I highly recommend it for people that can tolerate it. Since I am not a doctor, I would suggest that you talk to one, they may have other ideas on proper skin care and hygiene.

Another point I wanted to make was to remind everyone that advocacy matters. The Amputee Coalition, Amplitude magazine and several manufacturers of prosthetic devices including Rush™ Foot, have been fighting the battle for us on the issue of the Medicare guidelines. As I have written before several times, this is  a huge issue that affects every one of us, not just those that use Medicare benefits. We as amputees comprise just under one percent of the population of the United States. That means about 1 in every 125 Americans has suffered through the pain of losing a limb. This is a significant number of people. While about a quarter of those do not choose to, or do not require the use of prosthetic devices, about 1 in every 200 people need them to lead productive lives. We must make our voice heard, especially during this time of decision making. Lean on the representatives and senators for your district. Make sure that they are aware and get their commitment to provide the pressure needed to make appropriate changes to the guidelines that can reduce fraud and still provide the tools we need to lead our lives a close to normally as we can. And a note to the medical "professionals" that defrauded the government by approving or recommending inappropriate devices to those that did not need them, shame on you. You should lose your license to practice.

I hope to be back to posting on a more regular schedule through the rest of the year, thank you for your patience!!