After 2 miles on the treadmill I suited up and head out for the remainder of my ad hoc 15 mile run. My plan was to go as slow as I needed while not putting any extra stress on my residual. As I got my Camelbak ready, put on my i.d. and FOP bracelets, I could feel the first signs of discomfort in my prosthesis. I entered the church of denial.
Swelling nearly 6 hours post run
With my ill-fitting prosthesis, I have found whenever I stop my residual often gets very sensitive. So today there would be as few of these as I could manage, which I did until the last 3 miles. The day would be a warm one which I received with mixed blessings. At my speed it would more welcomed than if I was running faster and generating more body heat.
It wasn't a great run, but it was one I needed to get done. After mile 12 I stopped at every mile to take a break, not walking but standing still while taking long drinks. The first few steps running were extremely uncomfortable, but once I got underway the worst of the pain disappeared and allowed me to manage my, why yes let's call it what it was, jog.
My total run time was over 3 hours. I jogged all the way to the front door to avoid my residual going into revolt, which it did once I walked into the house. I grabbed the crutches to ease my pain and headed to the shower.
Last Sunday I was on crutches all night after the 8 measly miles, but after my shower this afternoon I was able to squeeze my swollen leg into my prosthesis and walk without the sticks. I still have intense sensations in the residual, just short of pain but the feeling remains that I would love to put that missing doggie in a cool, mountain stream like the Little Pigeon River.
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I am keeping my fingers crossed that I will get Dr. Ohlson's notes tomorrow so I can continue my appeal with BC/BS. In the meantime, I will continue to do all I can to run without being further disabled by my ill-fitting prosthesis. Jato has been a great companion to me and once reconstituted, just like me, will be ready for the battle that is Boston.
It will not be the time I know I can do, but it will be a time that is all I can do. And I won't settle for less.
Next week will be a decisive one for me. I should be able to submit Dr. Ohlson's notes to the health insurance company as part of my appeal to their denying me new prostheses. I am hopeful I will not be rejected again. If so I will have to continue to fight through other avenues, but those would take longer and possibly no resolution would come before the Boston Marathon.
Assuming I can get the good doctor's notes to BC/BS on Monday, the insurance medical director will have to review and then if approved, I will have to schedule an appointment with my prosthetist at ProCare to be fitted for the new prostheses. This could take an additional 2 - 3 weeks to be fitted and get all the parts needed to complete the work. At that point I would have about 8 weeks of training left before the taper for the marathon.
With these setbacks, I have had to adjust my goal times for the race upward. I believe I can still have a decent race with consistent training. One thing I have learned in my amputee running experience is there are just too many variables to assume you can have consistent training, especially at higher mileage and longer race distances. I can control getting my butt out of bed for a 4 am training run, but I cannot control the issues like I had last year that caused my residual limb to get smaller.
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Tomorrow I am planning a 15 mile long run. I will not be running a step today when I usually go 3 - 6 miles easy. I am hoping to let the swelling go down in my leg, which seems mostly to be concentrated at the distal end of my fibula.
If I can't make the 15 I will not run the planned half marathon next weekend at the Charleston Marathon. I have been considering not running it anyway as I need to increase my long runs, so we'll see. We could even switch to the 5k and I could run long on Sunday, but no final decision will be made until later in the week. In the best possible scenario I will be at ProCare getting fitted for my new running prosthesis. This would make me happy. Very, very happy!
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The track is not a playground
This past week I backed off my training to help minimize the swelling and other skin issues I am having with my current running prosthesis. I was able to complete shorter training runs with less discomfort and did not have to use the crutches again. On Friday I was able to complete my scheduled workout on the track, albeit slower in some unusually warm temps and having to deal with kids on the track once again.
I should mention although the teachers make an effort to keep the kids to the outside lanes; being kids, they do what kids do as you can see in the photo. I now believe my meniscectomy was caused by my trying to avoid a little girl who walked in front of me last year. I had to twist off to my right to avoid knocking her down; this was the incident when the "teacher" was at fault for not doing his job. He said something like: "I yelled at them to get out of the way." Yep, that is how the kids were taught that day.
When that happened I called the Town of Mt. Pleasant Recreation Director, Mr. Ken Ayoub, with a message that I am certain conveyed my frustration over the then complete lack of oversight at the track. After this call I did notice the teachers made a better effort to keep the inside lanes cleared for runners. However, the kids still stray into the lanes whether through inattention or intentional testing of the rules.
The past Friday was more of the same as you can see in the pic. The teachers simply cannot control the children on the track. I will not injury myself again or the kids because I am unable to stop quickly with my prosthesis. I have been making an effort to avoid this situation entirely by running early in the morning and late evening (which has usages problems too), and probably will just do so to keep my calm so I can do a workout without this nonsense.
It sucks. But I am tired of fighting this battle for now, I need to concentrate on my training without hearing kids screaming and wondering if I will have to call out to them to get out of my way while busting my guts running. Sucks. Sucks. Sucks. It is not right I can't run safely at this town track. I am simply asking to use the facility as a track, a running facility, the very thing it was designed and paid for at a cost of around one million dollars. I need just one lane, about 30" wide, on an oval meant for an athlete to run on.
Mr. Ayoub, I know you and many teachers are trying, but these kids should go play on one of the many other athletic fields and leave the track to citizen runners. The track is a running facility, not a playground, and it is irresponsible for the way it is currently being misused.
I have older post I have not published about the town's incredible mismanagement of the old town track I suppose I should drag up and finish. Perhaps if someone else gets injured they will choose a more direct legal path to change. Unfortunate, but entirely one needed to fix this problem since nothing else is working. Sad.
I was scheduled to run 20 miles - my first at that distance in over a year - and made 8 before my residual limb hurt so much in my socket that I had to quit. I tried to bull my way through the run, having to stop every few minutes to try a difference prosthetic sock fit that would ease my pain. Nothing worked.
After my shower I had to force my swollen leg into my old plastic "convenience" prosthesis. This prosthesis was made about 3 years ago when my residual was far larger and my leg usually slips right into it.
The swelling at the distal end of my fibula made it nearly as large and was longer than the tibia. Jennifer had to retrieve my crutches from out in the garage so I could walk. Yes, I cursed a bit and it wasn't about fiddlesticks either.
The thing is, detailed here, I knew I needed a new prosthesis and had been fitted with a test socket while awaiting insurance approval. I was denied. So now I am experiencing swelling, skin breakdown, and an inability to run and now walk without pain not because of anything I did but because my insurance claim was denied.
I am very shocked this has happened, particularly since my insurance has been so good up to this point. We will be moving through the appeals process and I hope this can be dealt with quickly, because as I write this there is a mere 97 days until Boston. There is a good chance I will miss the Charleston half marathon either due to lack of training or, best case, I will be getting fitted for a new socket if the insurance comes through.
Living in Frustration City is not where I want to be. I will be stepping up my personal involvement soon as I just don't have a single day to waste as the starting line looms in Hopkinton. Far worse than denying me the prosthesis is denying me this race. It cannot happen.
I am always amazed at how quickly atrophy occurs when muscles are not used in the manner for which they were designed. My right leg lost quite a bit of volume and tone when I could no longer run back in 2007 and especially after my surgeries when I could not use it at all. Once I started running again this process was mostly reversed, with my right thigh nearly returning to the same size as before all this unpleasantness began.
In 2012 I experienced two significant events that caused far more atrophy than would have normally occurred, the meniscectomy of my left knee and then cellulitis on my residual limb. Although my right calf muscle does not function as it once did, when I run it does fire and maintains some tone. With all the time off last year my amped leg got smaller.
Swelling along fibula (right side)
Early in November I visited ProCare to be fitted for new prostheses. My residual limb had changed in shape and volume to the point I was wearing 9 -10 plies of prosthetic socks in my sockets. I was having pain when running until I could get my sock fit just right, which means running on the treadmill until I felt discomfort, getting off and adjusting socks, then trying it again. Usually after a couple of miles I could get the fit good enough to venture outside for a longer run.
This isn't like any issues able-bodied runners face. Closest example I can think of is this: imagine having a size 6 foot and only having size 12 shoes to wear. The only way to keep the shoe on your foot is by adding socks. Sure you can put on 6 or more pairs of socks and keep the shoe from falling off, but you'll find it very awkward to walk. Running - especially what it takes to train for a marathon - would be extremely difficult.
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Skin breakdown on end of tibia
My insurance company denied my new legs. Best I can tell it is because I already have prostheses. Doesn't matter if my body has changed or not, too bad. So now I am facing additional injuries from a prosthesis that does not fit. Already I have swelling along my fibula that is worse the more I am on my feet, my patella is swollen from the number of socks I have to wear to keep the pressure off the distal end of my fibula, and from time to time I get skin breakdown. The fibula head has all the hair rubbed off from friction.
The last time I ran I used 14 plies of socks. I have to get my residual limb tight within the confines of my socket to minimize the pain I get on the distal end of my fibula, which manifests itself as a very sharp stab or as a world class friction burn. It is a bit odd that it is worse when walking than running.
*******
I had an office visit with my surgeon, Dr. Ohlson, and we are going to appeal the insurance denial. My life is different from most amputees in that I enjoy running and my activity level is the highest K4.
Dr. Ohlson understands everything I have been through to get where I am, he is one of the most caring, competent, and compassionate physicians I have known. Having performed my two surgeries, no one can possibly know my situation better than he. We are asking for nothing that I am not needing for living my life. Prosthetics are not a luxury item but a medical necessity.
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With the Boston Marathon a little over 3 months from now, I cannot afford weeks of downtime nor do I intend to let the present discomfort deter my training. What will happen will happen.
My fitness level is not what it was a year ago. Then I was running over 60 mi/week; now I am in the mid 40s. My times are far below what I could do then, in fact slower than almost 2 years ago. I cannot do shorter training runs very well because the number of socks restricts my knee movement so much so that I have to change my gait to avoid toppling over. For now I am doing what I can do; if not faster miles then I will do as many as my body will allow.
These are not excuses, just the facts I have to work with. It is frustrating knowing I am being held back not by desire but by things external. My current running prosthesis is extraordinary technology; however it has to fit my changed anatomy to work near optimal levels. It is now over 2 years old and can no longer function like it once did.
Short of my fibula breaking from the additional stress I am now experiencing, or a piano falling from the sky onto my head, nothing is going to keep me from Boston this year. I am training for all types of weather we may experience, and I hope by race day my times will be coming back closer to my ability. It is also my hope that I will be running in a new prosthesis as well.
I have money to raise for Ashley and the IFOPA. I have a date with my destiny. This is meant to be. I need to be on that starting line with my fellow runners Kelly and Shariff. My guides Randy and Mike will be ready to go. My wife Jennifer will be my rock when I am losing my race day mind. And we will run with the spirit of Jason Pisano in our hearts.
I dream and dream and dream about the Boston Marathon.
Always as I commute to and from work plus several times during the day I conjure imagines of being in Hopkinton and what it will feel like to stand on the starting line; of what I might say to my family and friends and guides; and how impossible it will be to run in front of the entire field if only for a few minutes, something I had felt once in a race a lifetime ago.
This being my second attempt to get to that famed starting line, I can say a very minute edge has been taken off the exceedingly sharp emotions I feel about the race. Even as I write this I know circumstance could take me out of the marathon on a whim as it did for 2012. Now whenever the first thought of Boston comes into my spacious head, it takes a few seconds for the magic to happen...then it does happen.
Having lost beloved family members, friends and pets, I can tell you, for me, being told my running days were over was just as hard a loss. When you first lose something you love it does not quite seem possible...you still have fleeting moments when they are not gone and then you know you will never see them again. Although in the back of my mind I knew I would somehow, some way run again, to run Boston would just be impossible.
Now it isn't. I just have to make it to the starting line.
Without dreams we move through life uninspired and with little purpose. When we touch our dreams we dream bigger, it serves to move us forward. Many people will try to dissuade or even ridicule your dreams; it is not really your dreams they find abhorrent, it is their lack of courage to dream as big if at all.
Start of fund raiser for Ashley Kurpiel's racing chair
Any moment this life can be taken from us. Every heart that ever beat is going to stop and return to dust. What is the purpose in any of this if we do not chase our dreams, even when we fall short of attaining them? To give up? Give in? Quit?
Here is what you do with one of the rarest conditions known to the human race, where your connecting tissues turn to bone and your mobility is forever compromised. You find your way to live an exceptional life, that by your very being you inspire others to lift themselves up. When you cannot run a single step, you learn to fly. This is the life of our friend Ashley, for whom I run at the Boston Marathon.
The dream of ending FOP is a good dream to dream, and when we awaken to the end of it all, we will have run a good race. It is one we must win. We must touch this dream. Together.
The quote was from a friend of Aron Ralston, who was not impressed by what Aron had accomplished as a mountaineer, but rather who he was as a person.
I know this nuance gets lost on many, myself included in that esteemed crowd. It's who you are not what you do that defines us. You can win the Tour De France 7 times, but if the person who did that is a cheat and a liar, then that defines the person no matter what accomplishments were achieved. The doing does not supersede the person, the being.
We all have failings, every one of us. We also have the ability to look within and decide...is this me? Self-promotion disturbs me particularly when I see it being done unabashedly by the disabled. Is this what I am, who I am? Sometimes things external to us cause this introspection. Whatever the source, the price of honesty can be very high...and most rewarding. But honesty must win or we lose. And when we defend the dishonest I see that as embracing and enabling evil. It must not be done.
My running, especially as my reconstituted self, has sharpened my eyes where they were once myopic. I see my most courageous and sweet friend Ashley Kurpiel, showing us all how to live life every day; I became friends with The Greatest, Jason Pisano, who defined precisely who a hero is; and then there is my amputee running mentor Kelly Luckett, who quietly goes about helping others without need for self-promotion.
After far too long and too many conflicting excuses, leg amputees will finally be allowed to run in an IPC sanctioned distance event, the 2013 London Marathon.
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I have written a number of posts about the fact no official world records could be set by amputees in distance events because of the IPC's discrimination toward leg amputees. You can read about this injustice here.An individual cannot claim a world record unless it is certified by the sport's governing body. The IPC has fervently denied leg amputees to run in distance events, thereby preventing official records from being set. It is a maddening Catch-22 against the very people the organization should take every opportunity to help.
This is unbelievable....here is just one of the excuses the IPC had offered up to discriminate against Richard Whitehead in the 2012 Paralympics:
"The IPC refused him permission to race in the marathon against upper
body amputees because it would confuse spectators and other athletes
said it could be dangerous. An appeal to the Court of Arbitration for
Sport was thrown out."
Confuse the spectators? What the hell? I think they were looking for something else, the excuses simply do not add up.
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Here are some of the posts I wrote about this disgrace. While seeking information on world records - and claims of them - I was often personally attacked which was astounding. Some cursed me and others no longer corresponded after I found no one could point me to official records for leg amputees outside of personal claims. (I have been aware of some effort by others to make this distinction clear which is progress.)
I wanted to verify that records would be indeed kept but to date there has been no response to this lowly grand masters runner. I posed the question to the IPC on Facebook and Twitter, and here is what I asked:
Facebook: Will the 2013 London Marathon certify T42-T44
times as official world records for leg amputees? Will these records be
officially kept outside of personal claims? Will all other distances
(800m though marathon) be available to these classifications as well in
future Paralympics?
Twitter:
I reposted the tweet this morning to see if I could get a response. Best I can tell my post on Facebook was deleted (!) but does show up in Google searches.
I still do not know if the IPC will continue to discriminate against leg amputees in other distance events (i.e. 5k, etc.) but it would not surprise me in the least. Not seeing my challenged friends competing in their preferred events in the 2012 Paralympics took a great deal of gloss off the games. I can only hope pressure will continue to be applied to the IPC by the athletes and the media to correct this great injustice foisted on the challenged athletes of the future.
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