Carnival!

The past week has been both difficult and exhausting. As much as I've tried to keep everything in perspective, the stress has been getting the better of both me and my moods. Tired of letting my anxiety have a clutch on my emotions, yesterday I declared "Chenoweth Family Fun" day.

It wasn't difficult to decide what to do because the county fair is running this week. We haven't been to the fair since Robby was two, and, to make the event more enticing, I found a coupon for free ride wrist bands! We grabbed some water, lathered on the sunscreen and headed to the fairgrounds.

Robby's excitement was contagious. By the time we pulled into the parking lot, the three of us were singing and laughing about the adventures that lay ahead. Robby practically flew out of his booster seat when he saw the Ferris wheel, and we could barely keep up with him as he ran to the ticket booth.

After getting our wrist bands, we took off to conquer the fair rides. Robby wanted to go on the swings first. I have such fond memories of riding the swings when I was a little girl. I remember feeling like I was weightless and fluttering through the air, so I was eager to share this experience with my little buddy.

The swings, I learned, are not nearly as much fun after age 30. Robby was screaming "whee" and giggled the entire ride. I kept my eyes closed and tried to concentrate on breathing in an attempt to refrain from vomiting. Scott brought me my leg at the end of the ride and had to help me out of the ride because I was so dizzy. Robby, in the meantime, had already looped around and was in line for another turn.

Scott and I took turns in what we dubbed "ride purgatory" for the rest of the night. We tried to allow enough time to recover before the other parent took a turn on a ride. I realized it takes me a lot longer to recover than it did when I was younger!

Seeing Scott's face after riding what I can only describe as a spin-around-backwards-while-moving-up-and-down ride, I knew that I had to step up and take my turn. Against my better judgment I followed Robby onto the Starship. I reasoned that there were rocket ships and happy astronauts on the spaceship shaped ride, so it couldn't be that bad!

Again, I was wrong. Once inside the happy looking space ship, we stood against the side of a padded wall. Within seconds the door closed, the music began to blare, and the walls started spinning. We were held in place by centrifugal forces. I could tell by his constant giggling that Robby thought this ride was the best!

Then, quite by surprise, the walls began to rise. Before I knew it, I was stuck to the side of a spinning wall with my head a few feet from the ceiling. I had no idea that the walls of this ride would move.

Had I known about the movement I would have been more diligent about my prosthetic placement. My body was raised when the wall moved, but my foot stayed in place. The heel of my prosthetic was wedged between the padding against the wall and the metal. The g-forces broke my suspension seal, and I was raised completely out of my prosthetic. I would have loved to see the looks on the faces of my fellow riders when I came out of my leg. Unfortunately the sheer terror I was experiencing caused me to keep my eyes closed tightly throughout the ride.

After the attendant helped me unwedge my prosthetic, I wobbled out of the Spaceship from Hell. I sat on the bench and put my head down. It took about five minutes for spinning to subside, but Robby remained oblivious to the effects of the g-forces, pausing just long enough to eat ice cream, french fries and a funnel cake--and, of course, to play games.

It turns out that my son has quite the knack for games on the Midway. He managed to pop four balloons with just three darts and won a plush turtle. He begged both his Daddy and me for the chance to win a fish. We finally conceded to let him try, fairly confident that he wouldn't succeed getting the ping pong ball into the small bowl.

I'd like to introduce the newest member of our family, Carny Fish. Robby won him with his first attempt. He threw the ping pong ball, which ricocheted off three bowls and the wall before bouncing into a fish bowl.

When we came home from the fair, we cleaned out the aquarium and introduced Carny to his new home. (Hopefully he will not meet the same fate as his finned predecessors.) Robby gave both Scott and me numerous hugs and kisses as we were tucking him into bed. He kept repeating that he had the "best night of his whole life." Hearing that almost made all the dizzying nausea worth it!

Stress Tipping

When I was little, one of my favorite board games was "Don't Tip the Waiter." A cardboard cut-out of a formally dressed waiter was balanced precariously on a stand. Each player had to put a plate of food (a cardboard circle) onto the platter until the weight tipped the waiter over, causing him to drop everything on his tray.

Last night, when I was having trouble sleeping, I found my mind wandering back to that childhood game. I am beginning to feel like the waiter, visualizing my stress and anxiety piling up on top of me. The game is not nearly as much fun in real life!

As much as developing a plan about dealing with my insurer has empowered me, my frustrations about this issue have reached a boiling point. I am on the verge of tears whenever I think about Elsie (my nickname for my workman's comp adjustor) and the turmoil that she is causing my family. I feel like I am being victimized simply because I want to maintain access to prosthetic care in the future.

With September approaching, my anxiety about Robby's enrollment in Kindergarten is increasing. I am excited about this new chapter in his life, but I would be lying if I didn't admit to being sad. Scott and I have decided to enroll Robby in a private Kindergarten program that offers half day classes. He will be in school for four hours a day and will have his afternoons to run around the yard and play at home.

Unlike the public school Kindergarten classes in our area, Robby's days will be filled with music, art, and creative play with other children. The school emphasizes parent involvement and expects the family to work with their child daily for one to two hours on academics. Robby will be provided with a packet of worksheets each week and Scott and I will teach him and help him to complete his work.

I realize that the school is unorthodox, but in many ways, so is our family. I felt a huge weight lifted off of my shoulders when we discovered the school. I know that it is the perfect fit and that Robby will thrive. Despite knowing that Robby will flourish, this change is causing me anxiety.

Another stressor is the response of friends and family about Robby's school. I am distraught over the amount of criticism that our family decision has garnered. To insinuate that Scott and I do not have Robby's academic best interest in mind is insulting. I know my child, and I know how he learns. His creativity, enthusiasm and love of learning would be squelched in a classroom of 34 other kids where art, music and movement were not included in the curriculum.

With Scott gearing up for a new school year, readying for a family trip to Texas later this week and the unanticipated need for four new tires, my stress levels are toxic. Lying in bed at night I feel like I'm going to buckle under the strain and worry. I am trying to be proactive and to deal with the issues that are within my control. I simply wish that I had control over more things. Sometimes being an adult is just really hard!

Formulating a Plan

This past week I have been on an emotional roller coaster. I cried most of Monday, spent much of Tuesday in a rage and was mentally and physically exhausted by Wednesday. This week is ending with my still feeling angry, but I no longer feel helpless.

I am thankful that I have friends who have stepped up to help me. My prosthetist spent over an hour with me helping to develop a lifetime prosthetic plan to present to the insurer. His billing expert met with me and helped me understand Medicare and how it would affect me should I choose to accept the notion of a "set aside account." Rest assured, I will blog more about this topic in the future!

After taking to Twitter to express my outrage towards the insurance company, I was almost immediately contacted by my attorney friend Dave--who happens to specialize in insurance and prosthetic reimbursement! He has used what little free time he has in his schedule to research my questions and to help me devise a plan of action. Dave has been elevated to hero status. I know that I can never repay him for reaching out to me when I was distraught and offering me a lifeline of knowledge and hope.

I have learned volumes about workman's compensation law, Medicare and standard health insurance (including the interplay among the three) during the past week. Much to my chagrin, I have come to the conclusion that I and every amputee need to become educated about these issues as well as impending legislation that stands to affect our standards of prosthetic care in the future. In the coming weeks I will try to relay what I have learned, as well as resources that have been helpful as I try to decipher my case.

While I resent the unnecessary turmoil that the insurance company is inflicting upon me, I am beginning to feel empowered again. I am grateful to my friends who have offered me emotional support. I am indebted to my prosthetist and to my friend Dave, both of whom have offered their time and professional expertise to help me. I am in the process of formulating a counter proposal that will secure my future prosthetic care. I refuse to be victimized by my insurance company's fiscal immorality!

Fakers and Facebook

Devotees and wannabes are the dirty underbelly of the amputee culture. These individuals, in their quest to befriend or to interact with an amputee, used to stalk prosthetic facilities and amputee conferences. The advent of the internet and social networking has brought the devotee community out of the shadows and into the face and lives of the amputee.

For those of you who might be unfamiliar with the term, a devotee is an individual who is attracted to an amputation. The attraction can range from admiration of the amputee to the sexualization of the limb loss. Although devotees are typically men seeking amputee women, I have heard of female devotees looking for men.

A wannabe is an individual who yearns to live the life of an amputee. Simply put, they feel that they have been born with one limb too many and covet our use of prosthetics and/ or crutches. Wannabes sometimes feign injuries in order to utilize crutches and, in extreme cases, will self-mutilate the offensive limb in a quest to become an amputee.

Facebook and Internet forums have become a cyber mine field for amputees to navigate. As soon as I identified myself as an amputee, I started receiving friend requests and lewd messages from questionable characters. After much experience, I am now able to sniff out a devotee like a blood hound going after a rabbit.

Upon receiving a friend request, I immediately investigate the individual. If he has only female friends, I deny him automatically. I always thoroughly investigate the groups and interests that the solicitor 'likes.' Devotees seldom stalk in isolation- they tend to join tell-tale groups such as "amputee devotee" and "I want to have sex with an amputee woman." Not too smart on their part, but I'm not complaining because it makes my detective work easier!

I rarely accept a friend request from an individual without a profile picture, from someone who has just joined Facebook, or a person who is friends with somebody I know to be a devotee or wannabe. When I am in doubt, I will send the individual an email asking them their intentions. You'd be amazed how many will profess to being a devotee or a wannabe in their response. When this happens, I deny the request and block the individual because it is my experience that if I don't block them, that they will continue to write to me.)

I find it sad that amputees have to deal with the cyber stalking of devotees. It has become such an issue that amputees have begun to communicate among themselves about whom they believe might be a "faker." Last week the authenticity of an amputee friend of mine was questioned. I never envisioned that I would write the sentence, "Rest assured, I have met her and she has only one leg!"

Robby Logic

I have put off thinking about "the k word" for as long as possible. Unfortunately, time has flown by and, despite my efforts to live in denial, I can no longer avoid the inevitable. Robby will be going to school next month, and I need to get him ready, so we packed up Robby and took him shopping for a backpack.

Standing in front of the shelves lined with backpacks, Scott and I realized that Robby was becoming confused. We quickly chose 10 backpacks that were both the appropriate size and featured cartoon characters that he likes, and we laid them on the floor in front of him. Robby was instructed to choose one.

After contemplating his choices for at least ten minutes, he finally decided upon the CARS backpack. With his new pack strapped onto his back, we moved on to pick out a lunch box. Another ten minutes passed before he picked up the bright yellow Spongebob lunch case. I was feeling a personal sense of satisfaction because I knew that he would pick those two!

Robby was elated with his backpack and lunch box, and at dinner he requested that his food be placed into the lunchbox. I quickly switched the menu to cold cut sandwiches and obliged. I remember being excited about receiving a new backpack and lunchbox. I'm so glad that little things bring him such delight!

After dinner, Robby pleaded to show his new backpack to Mr. Bill, our neighbor across the street. Mr. Bill was appropriately impressed by the CARS design and mesh water bottle holder. He then asked Robby what he was going to do with the backpack.

"Well, Mr. Bill," Robby said with a serious tone. "I'm going to be going to school this year. When I'm there, I will probably slip on an ice cube. After I slip on the ice cube I might fall on my back. My backpack will keep my back from getting hurt."

In that moment I realized that, despite his enthusiasm, Robby had no clue about the purpose of a backpack. He wasn't sure why he needed a backpack, but that certainly didn't keep him from becoming excited. After he was shown the pockets and carrying potential of his new backpack he is even more excited about his new acquisition!

I realized that we need to provide more background information when we are referring to school. Robby has no foundation or previous experiences so everything, even the purpose of a backpack, is a foreign concept to him. Seeing Robby pour his evening cereal snack from the bowl into his lunchbox perplexed me. Trying to keep my frustration about the mess in check, I asked him why he would do such a thing.

He was matter of fact with his reply. "Momom, I have a lunchbox now. I don't need to use a bowl or a plate." Yikes, I have a lot of prep work ahead of me in the next few weeks!

Ready for Battle

Many times I feel like my life as an amputee would be easier if all I had to worry about was phantom limb pain and prosthetics. Instead, I am forced to work within an archaic Workers Compensation system to receive basic prosthetic care. The insurance quagmire is more of a handicap than the lack of my foot and ankle!

I received a notification that my Workman's Compensation carrier would like to settle the claim and offered to fund a "Medicare Set-Aside" account to cover my future medical care. When I examined the numbers I thought that it was a joke. In reality, I underestimated the heartless mentality of the insurance company adjustor!

It is apparent that my adjustor is planning for me to live my life dependent upon a wheelchair. They have allocated funds to purchase seven wheelchairs, nineteen cushions and thirty eight wheelchair tune-ups. I have been generously allocated seven additional knee scooters should I decide to rise out of my wheelchair. I currently have a wheelchair and a knee scooter; both are buried beneath a mountain of outgrown baby clothes in the corner of my basement.

Obviously, my insurance adjustor would prefer I not use a prosthetic. After all, prosthetics are more expensive than wheelchairs. I am allowed only seven prosthetics and sockets for the remainder of my life. I should only replace my prosthetic liner every five years (they have offered to provide seven during the course of my life). The fact that Medicare allows for four liners a year due to hygiene issues is apparently of no concern.

Of course, should my limb become infected because of poor hygiene, I am covered. I have generously been provided with one doctor visit per year, providing that the physician charges no more than $117.49. X-Rays have also been anticipated, but I will have to insist that my doctor take one per year, so he should choose his view wisely. I suppose I will also have to remind my doctor that he should not prescribe more than one pill per year as I have only been allocated with 38 for my lifetime. Let's hope an all-encompassing, super-antibiotic pill costing no more than $24.99 will be invented soon!

Of course, I suppose I could forgo the medication for a few years to create a "stash" to provide a full day of pain medication should the need arise. I am permitted only three limb revision surgeries during my lifetime. My adjustor must have a great deal of confidence in my ability to handle pain because my one pill a year allotment will certainly not provide much relief.

Every morning I wake up and put on my prosthetic, trying to make the best life possible for me and my son. I have accepted that my pre-injury life is over, and I have carved out a new life path. While there is no number great enough to compensate for the loss of my foot, I was infuriated with this paltry offer.

Researching the proposal, I discovered that the numbers were provided by a company called PMSI Settlement Solutions. Their website touts that they will provide the "lowest defensible allocations." (http://www.pmsionline.com/settlement-solutions/msa-services) I wonder if they would put their prosthetic dependent spouse, mother or daughter into a wheelchair because it is cheaper. Hiding behind their computer screens, these figure-fabricating insurance whores actually brag about low-balling medical care for amputees and others with disabilities!

Throughout this process I have become a faceless, soulless entity in the eyes of my insurance company. I am viewed merely as a liability that needs to be written off the books with as little monetary output as possible. My abilities, my aspirations, my lifestyle and my intelligence were never considered.

I have been asked to approve or deny the proposal. As far as I'm concerned, the allocation created by PMSI is nothing more than a gauntlet. Is responding, through fax, with a succinct SCREW YOU clear enough, or perhaps I should just say DENIED as they are wont to do?

I did not ask, nor did I contribute to the accident which caused me to be injured. Given the chance, I would choose to live my life with my natural foot but since that is not possible, I rely upon a prosthetic device to walk. I will accept nothing less than adequate prosthetic care. Perhaps the insurance company underestimating me is my strongest advantage.

To my insurance carrier and to PMSI Settlement Solutions, I say, "Bring it on." This AmputeeMommy is ready for a fight not just for me, but for all of us!

Acceptance and Dinosaurs

The picnic we hosted on Friday evening was a rousing success, and all of the families seemed to thoroughly enjoy themselves. The parents were able to sit and share experiences and insights that come only from raising a child with an amputation while the kids were busy running through the yard, hopping in the moon bounce and laughing.

Robby was a fantastic host. He greeted his guests with a hearty handshake and introduced himself. He then took each family on a tour of the house, showing them the bathroom, the kitchen and, his favorite, the various holes in our ceiling.

Yet again, I have to admit that I was proud of my little boy. He wasn't daunted by the prosthetics and various disabilities of his new playmates. He accepted each child unconditionally and tailored the games to fit their abilities. When he did comment on the prosthetic it was to compliment the various designs that were featured on the socket.

He isn't fazed when he sees an individual with a limb loss or disability. When we are in public and Robby sees another amputee, he thinks nothing of introducing himself and informing his new acquaintance about "Momom's special leg." I rarely have to struggle with an ice breaker when he is with me. For him, prosthetic use is normal.

Saturday evening Robby and I had to run to Target. Of course, we can never have a quick trip to Target. I spent about five minutes picking up everything on my list and 40 minutes standing in the toy aisle while he peruses and studies the cars and assorted overpriced plastic treasures. Trying to get him away from the toys is like trying to get bees away from honey-- it's painful!

Walking through the dinosaur aisle, Robby stopped in his tracks. He knelt down and began to examine a toy through the box. He then reached into my pocket and insisted that I take a picture. Anticipating emailing the photo to Santa that night, I obliged.

But Robby did not ask me to send the picture to Santa that evening. He wanted me to send it to Elliot, my prosthetist. He went on to explain, "The dinosaur has a special arm like Momom's leg. I want Mr. Elliot to see the picture of the arm so that he can build you a leg that looks like that. It would be super duper cool!"

Looking at the picture closely I realized that the dinosaur did, indeed, have a robotic prosthetic arm. It made me chuckle that Robby made the connection so naturally. When I was pregnant I worried that growing up with a prosthetic-reliant mom would negatively impact my child. I've realized that my amputation has had the opposite affect. He is growing into a caring, compassionate and accepting child. I love that identifying and celebrating differences is his "norm."