Tour Time

Every morning after properly waking up with a cup (or two) of coffee, I slip into my riding clothes and head downstairs. I climb onto my bicycle trainer and virtual trainer and transport myself into an animated cycling adventure. In the month of July everything changes!

While I can still be found riding my bike, I could care less about what the trainer display is showing. I am transfixed as I pedal along with my all-time favorite sporting event. I love the Tour de France.

I haven't always been a cycling fan. In fact, I initially hated the sport. I was, literally, a captive audience. Scott was watching the Tour and had control over the remote control when I was recovering from my amputation. I couldn't walk to another TV, so I was left with no option but to watch.

I quickly became a die-hard fan. Witnessing the determination, the self-sacrifice and the sheer willpower exhibited by these athletes is inspiring. In my opinion, those who scoff at cycling as a sport have probably never bothered to watch!

When I ride during the month of July, my eyes are glued to the television. Sometimes I become so engrossed in the coverage that I forget I am in my basement. I become transported to the roads of France as I pedal and sweat along with my fellow cyclists. I seem to ride longer and harder during the Tour, often pedaling upwards of 40 miles at a time.

I have to give props to my husband. He not only understands how important the Tour has become to me, but also he indulges my quirky cycling fantasy. Scott has even been known to play the role of a schloog while cheering me on. A schloog is the term coined to describe the spectators along the route who are dressed in outlandish costumes to cheer on the riders.

The Tour is entering the mountain stages, and I am giddy with excitement. Our fridge is stocked with PowerAid Zero and my padded cycling shorts are clean. While putting away laundry yesterday I happened to notice that Robby and Scott's SuperHero shirts now have capes attached. This year I think I might have two schloogs to cheer me up the mountains, and I couldn't be happier!

Awareness Buttons

This past April was designated by the Amputee Coalition of America (ACA) as "Limb Loss Awareness Month." Information about Awareness month was scant, leaving many amputees (including myself) lost for exactly how to raise awareness. The evening of April 1 found my confusion morphing into frustration when I realized that ACA's own Facebook page failed to mention that their self-designated "Limb Loss Awareness Month" had arrived.

Reading the streaming conversational threads about what the month means and the best way to celebrate, I decided to become proactive. I quickly made a ribbon avatar and posted it on my Facebook page. To my surprise the ribbon became popular and was adopted by several hundred amputees during the month.

Since that time I have been receiving requests to purchase the prosthetic inspired ribbon. After several months I have finally secured a copyright on the design. I am thrilled to announce that the ribbon buttons are now available for purchase through this blog and my website.

The buttons measure 1.5 inches in diameter. I am selling them for $3.50 each which covers the cost of the button as well all shipping and handling costs incurred. Buttons can be purchased through the Paypal link in the sidebar of this blog. I think that the button looks fantastic and I am excited to offer it. I hope that you like it as well! Wear it with pride.

This is Your Best Collaborative Effort?

In full disclosure, I have a tumultuous history with the Transportation Security Administration (TSA). Robby and I were traveling last May when we encountered a screener who, in my opinion, abused his power and subjected us to a screening which lacked common courtesy and dignity. I have found the screenings conducted by TSA officials to be inconsistent among airports to the point where I experience anxiety before I arrive at the airport. Simply put, I never know what to expect.

In an effort to respond to the complaints lodged by passengers with disabilities, the TSA has been working with the Amputee Coalition of America (ACA) on a new notification system. I first learned of this plan over a year ago when my firestorm with the agency began. This system, at least a year in the works, has been touted as a way to facilitate the screening process for individuals with disabilities, including those with a limb loss.

I opened my email and was excited to receive a copy of the new notification card. I opened the PDF file and immediately began to laugh. Seriously TSA, you have had over a year and this is the best that can be done? A print-me-off-the-computer, fill in the blank, this is my disability but I'll still be subjected to extra screening name tag inspired card?

This "notification card" would indeed inform the screeners that I have a prosthetic and that I have a name. However, I have never had an agent dispute those points. Typically seeing carbon fiber attached to a pylon and a rubber foot is a fairly good indication of a prosthetic, even for the most inadequately trained agent!

I understand that this card might be quasi-useful for individuals with medical implants, or amputees who wear a cosmetic cover and are bashful about verbalizing their limb loss. For me, flashing the "I am an amputee" name card will do nothing to expedite the screening process. I habitually wear a skirt or shorts when traveling to make identification of my prosthetic easy.

The "notification card" is lacking any information about what I, as an individual with a disability, should expect during my screening. Perhaps printing the "dos" and "don'ts" on the card would have been advantageous to thwart any abuses of power. If the carrier knew that a request was against regulation (such as removing a prosthetic) and it was clearly stated on the "officially issued" pdf card, it could be an opportunity for education.

As it stands now, amputees will still be subjected to extra screening by individuals who have been improperly trained. I fail to fathom how seeing a computer generated, fill-in-the-blank-with-name-and-disability card will facilitate my screening. Speaking for myself, I find the "notification card" a pathetic attempt at outreach to the amputee community!

I have decided to improve upon the issued "notification card." Although I still doubt that this card will help to facilitate anything during the screening process, the AmputeeMommy version will at least educate the traveler about their rights. This information was glaringly absent from the official version which makes me wonder, does TSA not want amputees to know their rights?

Here is the AmputeeMommy version of the TSA card. Unlike the collaborative effort that took over a year to create, my notification card was created in Adobe-- in about 10 minutes.

Swim Swim Swim (sort of)

Robby's prized rectangle pool, which he adored and was set up in front of our front door, promptly popped two days after it was inflated and filled. Although I was initially upset, the puncture turned out to be a blessing. Seeing how thrilled Robby was with a 20" wading pool, Scott finally acquiesced and agreed to a larger pool for our little water bug.

After thoroughly researching our options, including a lengthy Facebook discussion, we headed to Toys R Us and bought our summer pool. We now have a 10 foot, 34 inch deep circle pool sitting in the corner of our driveway. Unfortunately we set up the pool without measuring. We blocked the garage door so we now have to park outside.

While our pool isn't completely level we did our best with some old blankets, a piece of his wagon and assorted foam alphabet letters. If I learned anything from my Mom growing up, it was how to improvise in a pinch. Thankfully Robby seems happy to have a shallow and deep end in his circle pool!

Robby is delighted with his "ginormous super deep circle pool." I have to admit that I've been enjoying it as well since I've been dreaming of having our own in ground swimming pool constructed in our backyard.  It is just deep enough for me to float on a raft. Of course, this rarely occurs because as soon as I lie down, Robby decides to hop on, promptly sinking the inflatable.

Yesterday, after riding my bike (to my chagrin my Prosthetist advised me that non-impact exercise will help with the swelling in my stump) I donned my bathing suit and prepared to spend the day poolside. We spent four hours splashing and playing. Scott, opting to stay dry, dutifully acted as our "Cabana Daddy" by bringing us snacks and drinks.

We spent the afternoon playing various versions of the same game, which was chase and hop on Momom. I wasn't wearing my swim leg so I spent the afternoon crab crawling around the circumference of the pool, trying to avoid being splashed and/or ridden. After four hours of crab crawling in the pool, my arms felt so heavy I didn't even want to move them to wash my face. Thankfully Robby seemed content to quietly play with play d'oh for the rest of the evening so I didn't have to move much.

After a brief interruption for travel, my 3S Summer is in full swing. I am refusing to spend any unnecessary time in the car and I am dedicating myself to having fun. Unfortunately we did have to run to the grocery store one time, but it was an emergency. We were out of ice cream!

No More Travel

I have been dutifully moisturizing my stump in order to treat the chapped skin. Unfortunately the heavy cream has done nothing to remedy the problem. In fact, with each passing day the area has grown bigger and more painful.

After nearly a week of my self-prescribed treatment for my self-diagnosed ailment failing, I finally broke down and called my prosthetist. (My plans for laying in the pool all day were squelched by thunderstorms that we were experiencing all afternoon, so I figured it was probably a good time to go.) I am glad that I decided to make an appointment!

It turns out that I did not have a chapped stump. I had the beginning of a blood blister. Moisturizing, I learned the hard way, provides no medicinal value for treating a blood blister!

We suspect that the blood blister formed as a result of the myriad of road trips I have been taking during the past two weeks. With my leg dangling as I have been sitting in the passenger seat of the car for a seemingly endless number of hours, the blood has been pooling at the bottom of my limb. My stump began to swell, creating a vacuum within my socket. Voila! I unknowingly provided the "perfect storm" for a blood blister.

I've switched to a larger socket and I have reverted to wearing a shrinker sock at night. The area has been marked so that I can monitor if the circumference is increasing or decreasing. For the next few days I am staying at home and boycotting the car- unless of course it involves going for ice cream! I have already told my friends and family that if they want to see me they will need to come here. I am now on the "traveler injured reserve" list.

*Despite the blood blister I have completed two dedicated miles, keeping me on track for my 100 mile challenge.

Funeral Fears

Yesterday was an exhausting day. Scott, Robby and I piled back into our car to travel four hours to a small town in northern Pennsylvania, but this was not a happy excursion: I was going to a funeral.

My stepbrother Christopher was born with cystic fibrosis. He was a tough kid, having survived numerous lung infections and more hospitalizations than anybody can imagine. Our prayers were answered when he received a double lung transplant. He continued to enjoy several active and happy years after his transplant so we were all shocked when he passed away in 2004.

Due to the circumstances around his sudden death, his brain was not buried with his remains during the original funeral. The organ was just released by the forensics experts. Yesterday I attended my first brain funeral.

I didn't know what to expect, and I was apprehensive about attending. I am ashamed to admit that I had a difficult time sleeping the night before the service for fear of an "open jar" viewing. I also knew that attending was the right thing to do, and I felt compelled to be there to honor Christopher and to support my dad and his wife.

The drive to the funeral was uneventful with the exception of the three times we had to stop by the side of the road because Robby had to go. Apparently urinating on the side of the Pennsylvania turnpike is a lot of fun. By the time we arrived at the funeral home, I was frazzled and exhausted.

I was relieved when I realized that his brain was sealed in a closed box. The service was touching and wonderfully appropriate. I put the hydrangea flowers that Robby picked for the occasion on top of the crypt and thanked Christopher for being our guardian angel.

After picking up Robby and Scott at the park (they did not attend the service) we went for a quick lunch. Then we piled back into the car and drove home. Despite being tired and stiff from the trip, I am glad that I attended. I hope that this service has provided a sense of peace for my dad and his wife. Their pain remains so raw, even after nearly seven years.

In the last ten days I have driven more than fifteen hundred miles. Today I can be found lounging poolside with Robby. I will sit in a car only if the trip is less than five miles and involves ice cream!

100 Miles in 100 Days...

During the past few months I have been wracking my brain trying to come up with my next great adventure. Last year I ran a 5k. I remain proud that with hard work and practice, I accomplished my goal. During the process I also realized how much I detest running. I've proven to myself that I can run a 5k and, to be perfectly honest, I have no desire to put myself through that purgatory again.

I have recently been contacted by an ambassador of the Prosthetic Outreach Foundation about joining them on a new endeavor. After thoroughly researching the organization to make sure that it is both legitimate and something that I feel comfortable lending my name to, I am excited about linking with them on this project.

The Prosthetic Outreach Foundation (POF) is based in Seattle, Washington, but has a global reach. It provides prosthetic devices and training to amputees around the globe whose finances keep them from accessing prosthetic care. The durable and low cost prosthetics provided through POF allow amputees to regain their mobility and contribute to the care of their families and community. Without the prosthetics provided through POF, many of these amputees are destined for a life of hardship and poverty simply because of their limb loss.

Prosthetics technology has grown leaps and bounds during the past decade. The introduction of bionic devices has revolutionized the field. I know that my computerized Proprio foot has changed my life! Prosthetics are becoming more intuitive, comfortable and realistic. It is truly an amazing time to be an amputee- but only if you have financial access to this level of technology.

I am fortunate enough to receive excellent prosthetic care and to utilize a high-end bionic device (Proprio ankle). Almost daily I find myself remarking to somebody about how much my Proprio has improved the quality of my life. When it comes to prosthetic care, I hit the lottery!

I feel compelled to pay it forward and to try to help amputees who are not as lucky. I want to make a real impact by providing prosthetic devices to those without access. I have decided to join Prosthetic Outreach Foundation by walking 100 miles in 100 days.

With each mile I will be reflecting upon the amputees who are not receiving any prosthetic care. I know how happy I was when I received my first prosthetic foot. It felt like I waited forever, but in reality it was only five months after my amputation. Many amputees wait for years, and even decades before they receive their first prosthetic- assuming that they are lucky enough to receive a prosthetic at all!

I will be raising funds through this walk to provide prosthetics for these amputees whom I will never meet. Knowing that my efforts might provide a prosthetic (or perhaps more) for a fellow amputee is humbling. I can't think of a better way to honor my journey so far and to show my gratitude for the prosthetics that I use!

I don't want to do this walk alone. I realize that my readers are spread around the world, but we can unite behind this walk. I encourage you to start your own fundraising page, tell your friends and start your own 100 mile walk. Together, we can start a movement.

I've always been an optimist. I, the AmputeeMommy, want to change the world for struggling amputees. Please consider joining me. Start your page, tell your friends and let's start walking! Together we can make a huge impact.