'sprokenword

What a fasciotomy looks like

2011-06-19T20:45:00.000-07:00

Pictures of my fasciotomy after six weeks of daily debraidment.

Footwear

2010-11-16T00:51:00.000-08:00

Four years later I still have edema on a daily basis. My ankles are swollen at the end of the day and contributes to the feeling of tiredness. Although pain has decreased with Lyrica, I still have to plan out activities to make sure I can make it through a busy day. I still need a day to recuperate after a day of standing and walking. In addition to edema, my ankles are still relatively weak compared to normal ankles. I've tried AFOs, but they get more in the way than they help.

I've tried a number of shoes ranging from flats, sandals, low heels, running shoes, diabetic shoes, and even cowboy boots. Fashion concerns aside, running shoes work pretty well as a general purpose shoe for me, but they don't provide ankle support or do anything for the edema. A friend shattered his ankle severely years ago and he's worn combat boots for years saying that they helped with his ankle. So I decided to give them a try.

I bought a pair of Altama 8" Litespeed Sidezip boots. Since I travel frequently, the side zipper is a great feature when going through security lines. Another benefit is that the 8" shaft laces up and compresses my ankles which stops the edema at my ankles. I've been wearing them for four weeks now including a weekend of walking around New Orleans and they have reduced the edema and the general fatigue. It's nice to find a solution that works and improves my mobility.

Learning to Stand

2010-07-15T04:07:00.000-07:00

I spent two months in a hospital bed because of my injuries. The first time I tried to stand up I fainted, but within a week and half I was walking and ready to give up the Zimmer frame/walker. After the initial physical therapy at the hospital, I had 12 weeks of additional physical therapy which was primarily treatment for drop foot and/or people recovering from plantar fasciitis. The focus of these therapies was to make a person ambulatory.

I've learned to walk, after a fashion, without a pronounced gate which can be a common trait for people with a drop foot condition. I still stumble if I'm not mindful but overall I get around. I say after a fashion because I walk on the balls of my feet. I also stand on the balls of feet which means standing is a prolonged balancing act that is both fatiguing and limiting when riding the subway or bus, standing in line, or just standing and talking to people. To get an idea of what walking is like for me here is a picture of Faith the two legged dog and her owner.

Notice how Faith is balancing on the pads of her paws. In contrast, her owner's left foot makes full contact with the ground. I walk like Faith.

It has taken me 4 years to realize that this is a problem. Before my injuries I had a regular practice of Bikram Yoga. I'm aware of the controversies and criticisms of Bikram Yoga, but I like the simplicity of the 26 asanas (postures) and the heated room which can reach 105˚ F. Half of the asanas are called the standing series, which why I decided to try Bikram Yoga again. The starting pose of the standing series is heels and toes together with your weight in the heels of your foot. Not being able to dorsiflex makes standing in this position challenging, but I'm finding other muscles to compensate for the ones I lost. In other words, I'm learning to dorsiflex once again; which my doctors did not think I would ever be able to do.

I'm on my third week of Bikram Yoga and I've made some good progress towards learning to stand and changing my gait. Another positive effect is that I'm starting to regain control of the muscles in my feet. There are other benefits to a regular yoga practice as well, but my experiment seems to be producing the desired results so far.

Reducing Pain

2009-11-29T19:08:00.000-08:00

I was raised to believe in an extreme form of playing through the pain, as if to bear the pain would bring some type of redemptive halo that one could wear proudly. I think it was caused by fear of doctors, medicine and cost of treatment on the part of my parents. I've long since stopped blaming my parents for the many quirks that I have, but its important to recognize where these behaviors came from. In some ways, the ability to deny pain has come in handy; for example when I was consultant I could bill 100+ hours week after week. I would eat ibuprofen to reduce the pain from exhaustion and drink pots of coffee to keep me going. Working constantly didn't benefit me other than an occasional pat on the head from my employer and recognition as a good worker, but I wore my pain like a badge of honor.

Since the fasciotomy three years ago, the nerves in my legs and feet have been haphazardly firing signals causing neuropathy. The pain varied from sudden and frequent stabbing pains at its worst to a low level burning sensation at its best. I decided enough was enough and that the neuropathy was limiting my mobility to the point where I would ration out the amount I would walk on any given day. I went to a pain specialist and he prescribed Lyrica, which is an anti-seizure drug.

I am always amused to see the disclaimer that the specific action of a drug is not understood, and that the reason that it's available is that it hasn't killed or maimed a statistically significant number of the trial recipients. Lyrica is supposed to work by slowing down nerve signals and is effective for treating Diabetic Nerve Pain (DPN). My neuropathy is like DPN, but without the diabetes. I've been on Lyrica for three weeks and it has helped immensely. I think that it has reduced the amount of pain by 85-90%. It has made things like a two mile walk from Chelsea to SOHO and volunteering at the Jimenez Dinner possible. On the whole, I'm more mobile and far less cranky from pain.

The downside of Lyrica is that its expensive. My insurer classifies Lyrica as Tier 3 drug, which means that they will only pay a fraction of the cost. Lyrica costs $50 a month in comparison to the $10 for the beta blockers I take for hypertension. While I can afford it for now, the thought of losing my job/insurance is in the back of my mind. A some point I'll probably be tempted to do another a startup, but the possibility of losing access to pain meds just adds another concern to creating a new venture. I feel rant about health care and insurance coming, so I'll just leave it there for now.

Disability Employment Awareness Month

2009-10-15T05:02:00.000-07:00

This inaugural post was prompted by a request from the Disability Blog Carnival for posts on disability and work.

My disability with my lower legs and feet is accurately described by Warren Zevon's diagnoses of "Your shit is fucked up." To be more specific, three years ago I suffered from compartment syndrome, which lead to rhabdomyolosis, kidney failure, DIC and 100 day stay in the hospital where they removed 50% of the muscle tissue in my legs and feet. I'm glad that I avoided dying and a dual below the knee amputation, but the medical outcomes were problems with walking, standing, and chronic neuropathy.

I help manage a non-profit organization that produces open source software for social good. I was hired to make the organization self sustaining and to wean it away from its angel funder. I love my job, just flat out love it. After spending years working on engineering and military projects and in the commercial software world, working at an organization that supports projects for the social good has reduced my cynicism and jaded outlook immensely. I love being part of an organization that makes tools that people can use to make life better. Not to go all Marxist, but what can be better than liberating the means of production from commercial interests?

My job is in Manhattan and I live in Texas for many reasons. I want my daughter to know her grandparents and cousins, my son goes to college in Texas, and being able to drive only a couple of hours to check in on my aging parents were factors for deciding to move back to Texas. It is home after all, and as the cliche goes, its all about work/life balance. I am fortunate that I can telecommute, but I need to spend time in Manhattan because I manage people and no amount of time on email, IRC, phone, and skype can substitute for face to face interaction. This means I'm in New York about two weeks out of the month.

My disability is in a gray area; its not apparent that I have disability, so I never take advantage of services when traveling. I do this primarily because of stubbornness and I am reluctant to explain my disability or show my fasciotomy scars. I'm not whining, but I've been othered throughout my life and my disability setting me apart is just one more thing I don't need.

I can't dorsiflex (move my feet upward) my feet so I have to be conscious of my gait or I'll drag my foot and possibly trip and fall. Despite this, I walk with out an aid, in fact I can walk pretty far. However, the constant coordination needed for walking or running can take a lot out of me. So while I can run a 5K (albeit slowly) it definitely takes its toll; as do long walks between airport gates or running to catch a connecting flight. Watching obese people riding carts through the airport while I hump it between gates annoys me.

Standing is more difficult, I lack the fine motor control needed to make the adjustments required of balancing. So standing in a disorganized queue while shuffling forward in a mass of people (this is how Amtrak boards people at NYC Penn Station) can be nerve racking. I always seem to be one step away from a fall.

Finally, there is the chronic pain from the neuropathy. This does more to reduce my quality of life than problems standing or walking. With standing or walking, there are workarounds , but there is no getting around the neuropathy. I've noticed that like other people with chronic pain, I organize my day around pain management. It's always a question of "how much can I stand" or "how much is too much?"

I would love for my disability to lessen and my mobility to improve, so I continue to look for solutions. I've researched pain management for the neuropathy and have read through forums such as disaboom.com to see if people who have had dual below the knee amputations were better off. The pain is bad enough for me to consider having my limbs removed. Despite my optimism induced by a near death experience, I'm a pragmatist at heart. I don't think I will get better and I'll eventually loose the level mobility that currently have.

People rarely get an opportunity to shape their industry or profession. I've done it once before and now I get another chance to play a part in reshaping my industry once more. I really love what I do, but the travel is wearing me down. At 44 I see the future as a count down clock. Work is less about possibilities and more of a question of how long I can keep this up.