About Me

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I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations. This blogger is available for hire! Let's talk and learn how a blog can expand your business.

Tuesday, March 02, 2010

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.

Monday, March 01, 2010

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!

Friday, February 26, 2010

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!

Thursday, February 25, 2010

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.

Wednesday, February 24, 2010

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.

Tuesday, February 23, 2010

Scott's Story

I have a friend who is preparing herself for an impending amputation that is scheduled for later this week. To say that she is terrified is an understatement. I understand what she is feeling.

Scott and I were discussing my friend and her emotions leading up to the surgery. He reminded me that she is not the only individual who is living through a tumultuous wave of anxiety and fear. Her partner is also scared. After all, they are both about to be thrown into a world which is new and full of unknowns- the world of living with limb loss.

Scott asked to write this post for my blog to shed a light on the feelings that the significant other may feel as a couple readies for an impending amputation. He wanted to provide a different perspective on the surgery.

I remember the last few days before Peggy had her amputation. I did my best to act like it was not happening and drive her mind in other directions. It went well for a while, but as the time approached, it felt like I was in a place without walls, where no one could help, and where no one could touch us to save us.

Before I go on, I want to say, this is not about me. To this day, I am not sure I could do what Peggy has endured including her many surgeries before the amputation and her struggles after the procedure.

A few days before the scheduled surgery, I received a phone call from UMH (Union Memorial Hospital) about Peggy's impending surgery. This was about 3 days prior.....and I was brought to tears.... So much so, that the nurse/attendant ( I am not sure to this day) could sense my discomfort, ok, distress. it was easy to tell since I could not stop crying on the phone with her. I am not sure where Peggy was, probably she was out of the house somewhere. This was the call that made everything final to me. This was really going to happen. I was scared and felt helpless.

I will not lie. The last day and hours of the night prior to going to the hospital were difficult. The drive to the hospital was excruciating for the both of us. We could not stop crying in the traffic of the suburbs of Washington DC and then eventually the drive up I-95 to Baltimore. That is all I want to say about that.

As we entered the area for check-in at Baltimore Memorial, we both could not talk. I only remember the very nice lady saying that she knew why Peggy was there and took her off for the obligatory paperwork. Peggy was crying so hard the lady couldn't understand her words. I wasn't able to translate. Thank goodness her Mom was there.

I am not sure where my mind was and that is not important. We both knew that what was going to happen. We just could not say it.

Down to to waiting area.

Pre-surgery was no picnic. There was always to time to call everything off.

Then waiting.

Then calling her back for pre-op.

Then visiting her in pre-op.

Then waiting in the pre-op.

Then the nurses...soon followed by the Anesthesiologist.

This is real. This is happening.

Soon she was on the stretcher, ready to leave. Leave with two feet, coming back with one.

Soon Dr. Schon, her surgeon, checks on us to who make sure everything is ok. Then he writes "yes" and "no" on her legs...... she was shaking. I was shaking.

Peggy's only request is to not see the instruments of her surgery. Dr. Schon, of course, complies.

A few minutes pass and it is time to say goodbye. And off she went......Her--and my--life would never be the same again.

But this in not about me nor should it be. After waiting a few hours, the finality of the situation was realized.

I saw the x-ray. of her now amputated.leg. It happened. It was a reality. If anyone wants to know more...please let me know. I have been in your shoes.

Monday, February 22, 2010

The Sick Ward...

This past weekend, our house has been converted into a sick house as Scott and I have both been sick. Robby has been healthy and has been taking full advantage of sluggish parents and lax rules.

I have been dealing with a cough and fever for a few days and suspected that walking pneumonia was brewing. I have developed an unsavory track record of coming down with pneumonia every year, and I am familiar with the symptoms. I called my doctor and I was started on antibiotics.

I was thankful for the weekend. With Scott being home, I knew that I would be afforded the opportunity to rest. I am traveling to Chicago on Tuesday for the AOPA conference, and I will need to be as healthy as possible. Although the work isn't physically difficult, I am expected to stand and talk with people for 8 to 10 hours every day. It is tiring.

Saturday morning I heard "Peggy! Peggy!" being squawked from the bathroom. I instantly knew that my weekend plans of respite and recovery were destroyed. Scott was sick.

I don't want to offend my male readers. Ladies, I'm sure you will agree. There is nothing worse than a sick man! Men are depicted as "stronger," yet a simple virus will lay them up in bed for days, nursing their illness with requests for fluffed pillows, chicken soup and ginger ale. Women can contract the same illness and continue about their day with only a tissue tucked into their pocket as an indicator of their illness.

I quickly discovered after Robby was born that there are no sick days for Mommies. Daddies can stay in bed all day and nurse a cold or recover from vomiting, but Mommies cannot. When both Mommy and Daddy are sick, Mommy must continue about the care taking and household duties regardless of her health. With Scott sick, the responsibility for caring for a bored toddler fell upon me.

I took my antibiotic and some Tylenol and took him to McDonald's Playland. The noise gave me a headache, and the smell of the food made me nauseous. Considering these factors, it was still the best option available. I was hoping that I could sit quietly and Robby would run around, releasing some pent up energy.

After two hours of Playland fun, I packed him up to go to the grocery store. Scott called and requested that I find some medication. Despite knowing that only time and ice chips would help, I knew that it easier to simply comply.

On the way into the grocery store, I asked Robby if he was going to be a good boy. He paused, looked at me with a cherub faced grin and said, "No Momom. Robby run amuck and be a hellion."

At least he was honest and provided me warning of his intent. As soon as we entered the store, he took off in full sprint. He paused only long enough to pull the coupons out of the automatic coupon machines, leaving them littered behind him. Up and down the aisles we sprinted until I finally corralled him in the seafood area (the lobsters always slow him down.) I put him in the cart, strapped his little Robby Rotten bum to the seat and ignored his screams.

Scott was still in his sick bed when we returned, mumbling that he hadn't vomited in nearly six hours. He complained of being weak, and thought it best to stay in bed and rest. He had no fever. My fever at this point was 102.8.

I bribed Robby into staying still by giving him cookie dough and letting him watch Cloudy with a Chance of Meatballs (again). I took the opportunity to put Vapor rub on my chest, hoping to ease the cough. I put on a thick coating, covered it with a towel and was getting ready to put the heating pad on my chest.

From out of nowhere, I was attacked by Robby's new kitten Charlie. It was like a scene from out of a cartoon. His fur was on end and he was possessed. Before I knew it, I had an orange kitten drooling and clawing all over my chest, hissing and gurgling. I tried to pull him off, but his claws kept digging into my flesh.

It was then I remembered that cats are attracted to the menthol in the vapor rub. Charlie was in drug like stance, trying desperately to get to the source of his fix. The fact that it was smeared on my chest was merely an inconvenience for him and was not going to stand in his way!

Knowing that I needed to keep Robby busy while I cleaned up, I gave him container of vanilla ice cream and a spoon. I took a shower, washed the now bloody vapor rub from my chest and applied Neosporin.

By 7:30 I was exhausted. I showed Robby that the sun went down, and told him it was time to go to bed. He went downstairs to say goodnight to his Daddy. Scott lifted his head from the pillow, looked at the clock, and told Robby that it was too early to go to bed. I can only assume that my husband made this statement because he was in a state of delirium from his illness!

I vetoed Scott and put Robby Rotten to bed. I was surprised at how quickly he fell asleep; I was a little concerned that he would suffer from a sugar high. I fell asleep by 8:00 hoping to feel better after a good night sleep and hoping my meds would soon kick in.

**I will be in a lot of trouble with my husband if I failed to mention that he recovered on Sunday. I was able to take a nap!**