A Bittersweet Celebration...

This past Sunday, our little family piled into the car and drove nearly 3 hours for lunch. Typically driving that distance for chicken would not have been considered. However, this past Sunday was different. We were driving to attend my Aunt Ethel's 90th Birthday Lunch.

Until recently, Aunt Ethel has been remarkably healthy. She is not on any medication, and complains when she must take ibuprofen for arthritis. It is widely believed among the family that my Aunt Ethel is simply too frugal to become sick.

Aunt Ethel was raised in a different generation. She does not believe in waste, and was perhaps one of the first proponents of recycling items through reusing them. Of course, she was motivated by saving money instead of the environment.

She has a system of folding napkins so that it can be used for four uses before it is thrown away. In the not so recent past she could still cut a pie into fourteen neat slices, even though the recipe only called for eight servings. As a child, we used to look forward to her hosting the family picnic. We quickly learned that we would stop at McDonald's on the way home after munching on our obligatory chicken thigh.

I do not want to insinuate that my Aunt does not have a generous spirit. She is extremely giving with her love, her stories and her time. She took in her grandson after his Mom passed away, and he had no where to turn. She never passed judgment or asked any questions. She simply offered love, encouragement and support. You cannot put a price on unconditional love.

My Aunt Ethel is my Nan's (my maternal grandmother) younger sister. Since my Nan passed away, Aunt Ethel has become more than a great Aunt. In many ways, she has become a living connection to our past. We all look forward to picking her up so she can visit with the family on holidays and at all other celebrations. In keeping with the family tradition, Aunt Ethel rarely misses any opportunity that involves cake!

It has become painfully obvious that Aunt Ethel is no longer safe living by herself. She is becoming forgetful and frail. Despite visits by the family and her friends, she is lonely. Hopefully her new living arrangement will afford her more opportunities to socialize, and she will be happier.

Despite living her entire life within the same 60 mile area, she is spending her actual birthday packing a lifetime of memories into a small U-Haul. She is being moved to another state to live in an assisted living facility near her son. She is leaving her friends, her church and her family. She is moving away from the cemetery where she buried her daughter and her husband. She is leaving her grandson and won't be here when her great granddaughter is born.

It must be difficult for my Aunt Ethel to leave a lifetime of memories as she moves to a new place. She will be closer to her son, whom she does not see frequently. He will feel more secure having his Mom close by so that he can care for her. All these reasons are valid, but it doesn't erase the fact that we will miss her.

This past Sunday, her family and friends all congregated for a combination birthday and farewell celebration. Almost everybody who was able to attend did because, I suppose on some level, we all know that this may be the last time we see her. It was a bittersweet as we celebrated 90 years of life and then we were all faced with saying goodbye.

Happy Birthday Aunt Ethel. I love you. I appreciate and value what you have brought to our family. I wish you nothing but love and happiness. I will miss you.


<---My cousin Dan with his Grandma (Aunt Ethel)



My Mom and Ethel--->

An Exciting Time for Amputees

I learned volumes at the Chicago conference. Although I was working and wasn't able to attend the seminars, my time in the booth afforded me the opportunity to "pick the brains" of some of the smartest individuals in the field of prosthetics. It feels strange to write, but this is an exciting time to be an amputee.

Throughout history, advances concerning amputation care and prosthetic design have only occurred during time of war. Scores of wounded soldiers requiring prosthetics forces the federal government to invest in research and design for new devices. Without the impetus of a war to spur research, the field is simply too small to make great strides.

Bionic technology is becoming both more compact in design and more responsive. I had the opportunity to see the new PowerKnee. In addition to simulating knee movements and offering stumble recovery, the knee actually helps to propel the wearer. I am blessed that I have not lost my knee, but I can imagine that this device will help a lot of AK amputees.

In the booth I met a variety of interesting people, including two engineers who focus on research and development. I took the opportunity to voice my displeasure over the unflattering rolling liner. I am pleased that they listened to my concerns. I was impressed that they returned to speak with me the next day after they spoke with the appropriate researchers. Apparently a non-rolling conical shaped liner is in development and should be ready for testing soon.

It was in the conference booth that I discovered that my weight loss had a more far reaching impact upon my prosthetic than I realized. I knew that shedding the pounds resulted in a smaller stump, necessitating multiple sockets. I also knew that, since my limb was small, my liner size would be smaller. I assumed that the impact was limited to these areas.

I did not know that components were manufactured in various categories depending upon the weight of the user. In retrospect it is logical. A foot designed for somebody who is 100 pounds will not work the same way for a user who is 200 pounds. In the realm of prosthetic components, size matters!

I have been walking around on a foot designed for an individual who was 225-250 pounds. I am now significantly lighter. The foot was not as reactive as intended because I did not have the weight to make it work. I was placed into the appropriate category foot, and instantly felt "springier."

The difference I feel between the two categories of feet is significant. I didn't realize that I was missing a "spring in my step." As I slowly lost weight, my foot slowly became less responsive. I suspect that if the change had been immediate, I might have noticed.

I am lucky that I was working at the conference and that the inappropriate category was spotted. I continue to have the highest level of respect and admiration for my prosthetist, although I do question why the mismatch was overlooked. It does make me wander, what else am I missing?

I should have researched the impact of weight loss and prosthetics more thoroughly. My prosthetist should have known that my drastic loss of pounds put me into a different category foot. As far as I am concerned, we share responsibility for the mistake.

I left Chicago armed with increased knowledge about prosthetic components. I now have the correct foot for my weight category. I also received a really cute pair of shoes because the salespeople didn't like my Shape-Ups. Information, a new foot and a new pair of shoes... I would say that the trip was a success!

The Sheriff is Back...

I came home from my Chicago trip on Saturday night. Unfortunately I have been going nonstop since I arrived home. The rest and rejuvenation, which I reaped on the trip, has been evaporating.

Robby was clingy when I came home. Actually, clingy is not an apt description. I've had to sleep on the pull-out sofa in his bedroom the fast few nights because of his insecurities. In the middle of the night I feel his little hand on the top of my head. I ask him what he wants and he simply replies, "just checking." I haven't used the bathroom without a three year old chaperone since I came home!

I have been cleaning all day, and I feel as if I'm not making a dent. My washing machine has been humming all morning, yet baskets of dirty clothes are still staring at me. Although I was not on a vacation, I did enjoy my time away from home. Unfortunately, I am now paying the price for my leisurely breakfasts in bed!

I have finally gotten the playroom/ bedroom area under control. I asked Robby Rotten for assistance in cleaning up his toys, gleefully singing, "It's time to put the toys away." Apparently unmotivated, he refused. I put the toys into the suitcase that I used to go to Chicago. His treasures are all under lock and key, and he must behave to earn them back. I am amazed that I can finally see the color of my carpet, albeit stained with Playdoh and various snacks.

The toys being locked up isn't the only shock to Robby's little world. Time away afforded me the opportunity to reflect. I have concluded that Robby is teetering on the line of becoming a brat. He is no longer running the show. I am!

When Robby was experiencing "poop" issues, Scott and I became concerned about his caloric intake. He simply wasn't eating, and he was losing weight. We were happy when he expressed an interest in eating, regardless of the time or location. This lax attitude has enabled Robby to become a "grazer." He has been refusing to eat during mealtime, preferring small snacks throughout the day. His bowel issues are now under control. It is time to reign in the grazer!

I fully expect an epic battle during the next few days. Robby has already been disagreeing with many of the new "old" rules that I am enforcing. Much to his chagrin, I am going to win. I have a large bottle of Tylenol and an iPod with great headphones. His screaming and fussing is no longer an issue.

In addition to being a "mean mean Momom," I have been trying to restore order. Robby has been glued to my hip as I have been cleaning up after the hurricane which obviously passed through my house in my absence. He is now eager to help and been reminding me that he is a "good helper." I accept his assistance but I recognize the ploy. He is trying to ingratiate himself to me in an attempt to earn back his toys and the coveted cookie dough. Yes, he is a smart little boy. At least for the time being, I am still smarter. At least I hope so.

Prosthetists...The Good, The Bad, and The Lazy

After five adventure filled days in the Windy City, I am finally home. Although I missed "my boys," I thoroughly enjoyed my time away. I feel energized and rejuvenated. I also feel validated having talents recognized other than those utilized in the caring for my family. It is nice to be reminded that I am more than a wife and mother. But--one look at my house let me know that I returned in the nick of time.

Robby spent the majority of the time with his Nana but returned home to spend Friday night and Saturday with Scott in anticipation of my return. Somehow, in a mere 24 hours, Robby managed to utterly destroy the house. Although Robby certainly deserves some of the blame, the majority of the guilt lies with Scott. Apparently both of "my boys" require parental supervision when putting away their toys!

I became spoiled with both room and maid service. I felt like royalty when I picked up the telephone to order breakfast and, 20 minutes later, a beautiful waffle and a pot off coffee was delivered to my door. What a treat! I didn't make my bed when I left for the conference booth. Although I knew that the room would be cleaned in my absence, I was still giddy every day when I came back to a freshly made bed and a brand new set of little soaps (which I immediately stashed in my suit case).

Working in the exhibition hall booth every day, although tiring, was also exhilarating. I loved meeting prosthetists and professionals from all over the world. Every conversation was different, and I felt like I was always learning something new.

I met so many brilliant prosthetists who were excited about the future of the field. These individuals viewed their patients as partners in the process. They were eager to learn all of the new options which were becoming available.

Unfortunately, I was also discouraged that so many prosthetists seemed closed to new technology and innovations. Although some seemed genuinely interested in my experiences, many refused to listen. I became frustrated, and then saddened, as I encountered so many poor to merely mediocre prosthetists. As amputees, we deserve better.

As an amputee, I deserve a prosthetist who is willing to try all new technology and devices, regardless of a personal bias or even a previous experience. The Proprio ankle absolutely changed my life. I understand that another BK may not have the same experience. However, he or she deserves the opportunity to try the ankle to make the determination for themselves.

I trust my prosthetist to guide me through all of my prosthetic options. I am a busy individual who does not have the knowledge nor do I have the resources to fully research all of the components on the market. With so much technology on the market and with new devices set to launch in coming months, I depend upon my prosthetist to lead me through the maze of products.

I understand that it is not feasible for me to try every component on the market. It would be both exorbitant and laborious. I know that my needs are being looked after by my prosthetist, that he will know when a product might help me before I know of its existence. He looks at function and allows me to make the determination about comfort, weight, size and aesthetics.

Having an open rapport with my prosthetist has been paramount to my regaining an active lifestyle after my amputation. It became clear to me, through my interactions with many of the prosthetists at the conference, that not every professional is good in their field. Instead of looking after the patient's best interest, many are concerned about the ease of manufacturing and their bottom line.

Bionic technology is often dismissed because it makes manufacturing the limb both more difficult and more expensive. I am concerned about the number of amputees who are settling for poor prosthetic care merely because of the complacency of their prosthetists. I was discouraged by some of the interactions I had at the conference.

If you have a prosthetist who you feel does not listen, find a new one. If you find that your prosthetist is trying to talk you out of trying bionic technology, so that you can make the decision for yourself, find a new one. If your prosthetist doesn't educate you about various components available for a specific prosthetic that is being designed, find a new one. If you feel uncomfortable asking questions, or are told to live with an ill-fitting socket, find a new one.

We wouldn't continue going to a hair stylist who refused to let us try a new color, so why would we continue to patronize a prosthetist who refuses to let us try a new style of limb? All amputees deserve to be a partner in their prosthetic design. After all, we are the one living with the results!

More Lessons Learned...

I spent the majority of the day yesterday in a training course. For all intent and purposes, I was the visual aid. I am asked to demonstrate the various aspects of the Proprio, and then I show off my "Tyra Banks" runway style by walking up and down the aisle of the room. At the end of the session I am often peppered with questions. To be honest, the questioning is my favorite part!

Because the exhibit hall was opening immediately following the educational session, I had to wear a dress. Normally I am dressed in my conference "uniform" of tan shorts and a light blue polo shirt. Because of this more formal event, I was afforded the opportunity to dress up, or at least, to put on a dress.

They checked my ankle earlier in the day and everything was working properly. I was deemed "good to go" and free to explore Chicago for two hours. After a brief city tour and a quick lunch, I returned to my room to get ready for the session and for the evenings events.

I put on my Spanx (a comfortable girdle type undergarment that features full short legs) and my dress. After doing my hair, putting on my make-up and eating two chocolate covered pretzels, I was ready to conquer the conference.

Everything went fine throughout the education session. The turn-out was relatively strong, about 30 people. More importantly, they seemed interested and open to the new technology. After a lot of sitting and nodding, it was time for me to show off the ankle.

The participants were asked to be quiet during my "runway" walk so they could hear how quiet the ankle really is. The slight buzz of the ankle movement can is only audible when there are no other ambient room noises. I smiled, took a deep breath and tried to walk as "normally" as possible.

Swish swish..buzz... swish swish...buzz........

I heard it, but I was hoping that nobody else did. I kept walking. I kept smiling.

Swish swish....buzz... swish swish...buzz... Oh no! This cannot be happening. I was hoping that nobody else heard the unflattering swishing sound.

One look at an Ossur prosthetist in the audience immediately told me that he heard the noise as well. I looked around the room at the faces of Ossur employees, and I realized that they all heard the unusual sound. Not knowing quite what to do, I kept my head held high as I continued to swish... buzz.... past the audience. I took a seat and we continued with the program.

At the conclusion of the class I was descended upon by three prosthetists and two individuals from Iceland who work in Research and Development. The five men, all whipping out their wrenches, systematically took my leg apart.

Proprio pieces were lined up on the table in front of me. It took me a few moments to process what was occurring. Apparently, they were completely stumped by the source of the swishing sound. My ankle was reassembled, but the pesky swishing sound persisted.

They were absolutely perplexed. Through the heavy Icelandic accents I could decipher that they had never heard the swishing sound before. Unfortunately, I have heard the swishing sound before.

I was going to tell them my theory. As I was formulating my explanation to explain to the men, I realized that they were on the phone having another ankle over-nighted to the conference center. I suppose I should have told them that I knew the culprit of the annoying swishing sound was not the leg.

I never would have guessed that Lycra covered thighs rubbing against each other would make such a loud swishing noise!

How could I tell these men, in dark suits with wrenches in hand, that the sounds were not emanating from the ankle but from my support undergarment? I was too embarrassed!

My new ankle will arrive by 10 AM this morning, and my Spanx are safely stowed in the bottom of my suitcase where they will stay. I have learned two lessons today. First, the swishing sound of lycra covered thighs rubbing against each other can be heard throughout an auditorium. Second, men cannot identify a sound that could be easily recognized by women all over. Both items of information are useful. However, I am looking forward to the new loaner ankle!

Pretty, But Not Functional

I woke up this morning feeling refreshed and excited about the adventure that awaited me. Maybe because I had my first solid nights sleep in weeks, or maybe it is because I am finally recovering from my pneumonia, but for whatever reason, Chicago didn't seem quite as intimidating and scary. I was ready to go for an explore.

After drinking some coffee and checking my email, I grabbed my portable grab bar and got ready to take a shower. Although I requested a shower chair, the hotel did not have one available. I wasn't surprised; I am at a conference where a lot of the attendees are amputees. I would make due with sitting in the tub.

Since my amputation, I would have to say that I don't enjoy the bathing experience in hotels. I suppose much of my dislike stems from being out of my comfort zone. At home I have the bathroom fully accessible. I chose the location for the grab bars, and I am the only one who uses the shower chair. I am familiar with the height of the tub etc..

I knew that I was going to have a problem the moment I looked at the decorative tile in the bathroom. The "modern" motif of the hotel features a wavy textured tile along the shower walls. Pretty, yes. Unfortunately the suction cups on my grab bar couldn't make a seal, rendering the tool useless.

I assumed my position sitting in the tub and started the water. The shower head was stationary, making washing my hair more difficult. I was forced to try to follow the weak stream of water with my soapy head until all of the shampoo was rinsed away. Needless to say, it was not a relaxing experience.

Getting out of the tub was an interesting experience. Since I was lacking a grab bar and the tub was more shallow than most, I had a difficult time formulating my approach. I tried to develop a plan that would not involve my having to go onto the bathroom floor. Every option I considered posed the risk of falling, so I was left with no choice.

There I was, on the hard tile floor of a hotel bathroom, dripping wet with quasi-rinsed hair. I wanted to cry. I hated that I was missing my foot, and that I couldn't simply "take a shower." I hated that the process was laborious and needed to be well-planned. Crawling around a hotel bathroom floor, naked and wet, is a humiliating experience. Nobody should be put in that position!

I did try to put the bathroom mishap behind me. I was able to explore the city. Well, to be honest I only walked about 10 blocks. But I did it, and that's a start! I didn't make it to the Weber Grill Restaurant, but I did meet some new people and I am optimistic about tomorrow. I'll keep you posted.

Missing: My Adventurous Spirit

After a long day of traveling, I have finally arrived in Chicago. To be more specific, I finally arrived at my hotel which happens to be located in Chicago. I doubt that I will explore my new surroundings.

Time and experience has tamed my adventurous spirit. When I was younger, I would think nothing of grabbing a map and setting off to explore. I am not sure if it is my limb loss, my age, or perhaps a combination of both, but I am more cautious.

Actually, cautious is probably not a strong enough descriptor. I hesitate to admit it, but being alone in an unfamiliar city scares me. I hate being scared!

I am more aware of the hazards in the world. I know about predators, and the potential of danger from devotees. I am also cognizant that, since I am at a conference geared towards prosthetics, devotees are bound to be lurking around. In a strange way, I am noticing an direct correlation between the height of the buildings around me and my level of insecurity. As the buildings become taller and more clustered, I become more insecure, self-conscious and scared. Again, I hate that feeling!

Before my amputation, I suspect I would have been more likely to explore. Yes, I would have been nervous, but I would not have let my fears stop me. Now I am living with a different reality.

As much as I hate to admit it, my amputation has affected me in some very real ways. Other than the obvious, I think that I am more aware of my surroundings, especially of possible dangers. I know that I am an easier target for assailants. One strong push and I am on the ground. It takes me longer to stand up, and I can't run as quickly as others. Take off my leg, and I am stranded, at the mercy of whoever is holding my prosthetic. If I were one of the "bad guys," I would probably pick me, or somebody like me, as a target. Despite self-defense training, I am more vulnerable.

I don't know this city, and I wouldn't know if I wandered into an unsavory section of town before the mistake was made. I wish I could go sight seeing. I have been wanting to go to the Weber Grill Restaurant since I saw it featured on the Food Channel. I saw the restaurant from my taxi. Does that count?

I am beating myself up because of my fears. I resent that my limb loss has made me so concerned that I am hesitant to explore Chicago on my own. I want to get up and go experience this city. I also don't want to get lost or hurt and, right now, staying safe feels like more of a priority.

Perhaps, after the conference starts and I begin to meet people, I will become more comfortable venturing beyond the hotel walls. I know that I there is safety in numbers. For now, I am going to enjoy the solitude and the treats offered by room service.