All I Want

Mother's Day is Sunday, and after the past week I can honestly say I don't care about getting breakfast in bed. I don't need flowers, nor do I need to be showered with adoration and presents. All I really want for Mother's Day is for my family to return to health.

There was a time when I felt that the worst thing in the world was being sick.  Then I became a Mom, and I experienced the horrible reality of watching your child suffer with a fever. I was sure that nothing could be worse. This week, I learned that the only thing worse than your child being sick is being rendered so incapacitated that you can't care for your sick child.

Thankfully I am now recovered enough to take care of the boys. (While I'm not 100%, I'm functional enough to muddle through until Scott comes home from work.) Robby is still fighting a fever and general fatigue and pain. I think another day or two of drinking water, taking naps and vegging out while watching Scooby Doo might be in order.

Timmy had an unexpected trip to the emergency room yesterday afternoon due to high fever and labored breathing.  The doctors were able to break his fever and provide medicine to help ease his breathing.  He slept all night, and I'm hopeful that he is on the mend.

Fingers crossed for a healthier weekend!

Thanks Nana~

I am feeling better. Not great, but definitely not as bad as I was on Monday and Tuesday. The fact that I can now get out of bed and walk in a straight line without labored breathing is going to be a benefit as I take care of my family, all of whom are now sick.

Although everybody is sick, it seems that every member of my family wanted to put their own unique spin on their illness. Scott has a severe cold.  Robby has a fever and is vomiting.  Timmy, apparently unable to decide between following his big brother or his Daddy, is now vomiting with a cold. 

My Mom has been an absolute godsend, but I know that she has to go home today.  I honestly don't know how we would have trudged through the past few days without her. I am worried that we have exposed her to the pestilence and that she will take a weird mutation of all of these illnesses back home with her.  (Fingers crossed that Nana doesn't get sick!)  Despite the sleepless nights, being covered with vomit and listening to complaints from every person in his house about how he or she is feeling, my Mom never wavered in offering to help. 

I'm feeling 70% recovered, which is hopefully enough to take care of this sick brood.  Wish me luck today!

Sick Day #2

Yesterday I was reminded that I will never be too old to need my Mom.  She dropped everything and drove to VA to take care of me (and Timmy, since he is now sick as well).  She is definitely earning Mother of the Year this year!

Most of yesterday was rough, with me barely able to move out of bed and experience both pain and fatigue.  As the day wore on I started to feel a little stronger.  This morning I'm actually out of bed, so I consider that great progress!

Pneumonia

Yesterday I woke feeling miserable and quickly spiraled downward.  I went to the doctor after dropping off Robby at school, where I was given a diagnosis of pneumonia and a bag full of pills.  Thankfully my Mom made the trek to VA last night, so she could take care of Timmy today while I try to sleep and recover.

Mobility Saves

The past few days have been incredibly busy, and I suspect that my packed schedule has caught up with me. I woke up yesterday morning not feeling well, and have progressed from bad to worse quickly. I now have a fever of 103, I am coughing and am struggling to breath deeply. I guess the chemo is still wreaking havoc with my body and has lowered my immune system.  To be honest, I'm not looking forward to today. With Scott at work, I'm not sure how I'm going to be able to rest and take care of Timmy.  I wish Moms could have sick days!

Despite being sick now, I certainly don't regret how I spent my time last week. I was able to introduce prosthetic parity to a large group of individuals who had no idea about the real-life struggles in the amputee community. I was honored to represent this community through my testifying at a Congressional hearing on the issue. While I still think we have a long road ahead of us, I am taking solace in the fact that a dialog has been started on the issue.  I may be an eternal optimist, but sitting on the train on the way home from DC, I couldn't help but believe that we made an incremental movement in the right direction.

Living in a proof-driven society has been detrimental for the amputee community because we have been lacking empirical data about the benefits of providing prosthetic devices.  While I can share hundreds of anecdotal stories about a life completely turned around when a prosthetic was received, these testimonials have little impact on the bureaucrats making the policies. They value research and savings above improved quality of life. 

For the first time, the limb loss community has research that proves that providing a prosthetic and/or orthotic device lowers the cost expenditures over 18 months. When a prosthetic is provided, individuals have fewer secondary conditions often associated with immobility.  Although the upfront cost is higher for the insurance company, the investment results in fewer medical bills over time and after 18 months equates to equal or lower medical expenditures.  (The entire study can be viewed at www.mobilitysaves.org)  

I hope that we moved the bar a little towards insurance fairness, but I have no illusions about the amount of work that lies ahead. My experience on Friday only strengthened my resolve to work towards effecting change on this issue.  But not today because today I'm taking a sick day.  Or, as much of a sick day as I can muster while trying to wrangle a curious one year old all day!

Big Day!

Today is a big day for me! I have been invited to provide testimony during a Congressional hearing about access to prosthetics. I feel like I have been working towards this moment for years, and I am both excited and terrified about the coming hours.

Three amputees have been asked to provide testimony during today's hearing. A representative from the Boston Marathon bombings, an individual who was injured during combat service, and me. Obviously, I am the token representative from the civilian amputee community.  We all have our own journey, but the reality of the other two speakers is not typical for an amputee in this country. While they have been provided with the best technology and rehabilitation, most amputees are struggling to scrape together the funds for the most basic of devices.  

Almost every day I field emails from people from all over this country, desperate to get fitted with a prosthetic. Moms and Dads are relegated to living life in the sidelines, not because they lack intrinsic motivation to walk with a prosthesis but because they don't have the funds required to get one. I find myself far more disabled by my insurance policy than I am by the loss of my biological leg. I am both excited and honored to relay these stories in the hopes of starting a realistic dialog. I truly believe that it if the public knew of the real life struggles in the amputee community, change would result.

Despite being nervous, I am going to do my best to provide a true life depiction of the struggles of the "normal" amputee in this country.  I have committed hours of prep time to today's testimony. I know the issue and feel confident that I can speak accurately, passionately and effectively about the struggles faced by so many of my friends. I feel intimidated by the responsibility, but not by the audience. There was a time I would have been simultaneously awe struck and silenced by the prospect of presenting to an elected official. The gravity of this issue has erased any of these fears and has served to fuel my passion. I finally have an audience with clout, and I have no intention of being quieted without thoroughly depicting the hurdles encountered due to our lack of insurance parity.

Stay tuned as the AmputeeMommy takes on Congress!

ReelAbilities DC

Yesterday evening I had the opportunity to speak as part of the ReelAbilities DC film festival. Although both leaving my house after dark and speaking to crowds are outside of my norm, I was excited about the opportunity. Who would have thought that I would be speaking at a film festival?

The film shown was a documentary touting the life changing wonders of prosthetic technology. It was well-done, yet I saw it as little more than another attempt to glamorize prosthetics for the able bodied community. (In the disabled community, such videos are referred to as gimp porn.)

Watching the film, I struggled to figure out what I was going to say. Other than to talk about my story and reactions to the film, I was given little direction. As my thoughts swirled, I doubted that they really wanted to know my honest reaction.

When I heard the film narrator declare that amputees were becoming "super human" and would soon be the "envy of the able bodied world because of their technology," I knew I had to address the dirty little secrets behind these "miraculous" advancements. The majority of amputees struggle to access the most basic devices. The bionic devices demonstrated in the movie are completely unattainable.

I began my speech by introducing myself, but quickly parlayed into prosthetic parity. I discussed insurance issues and the real life struggles of the amputee community. The audience was flabbergasted when I revealed the price tags, and the 3 year longevity expectations, of the bionic devices featured.

I spoke about the one limb per lifetime caps in New York state, as well as the complete exclusions in Nevada and Alaska. I relayed stories of local families struggling to afford the copay for a leg for their 10 year old son, who is currently relegated to crawling because the family earns too much to get assistance yet doesn't make nearly enough to afford the 10,000 copay required for the device. When I revealed that I am disabled not by the loss of my limb but through the red tape of my insurance carrier, the auditorium erupted into applause.

I may not have delivered the speech the organizers were anticipating, but the audience was captivated. I could tell that the message was heard when a flurry of hands flew in the air when I offered to answer questions. My 10 minute speech turned into a 45 minute interactive presentation.

Driving home, I couldn't help but ponder the possibilities if the film makers had opted to make a realistic portrayal of limb loss issues. I realize that technology is glamorous, and is touted because it makes everybody feel better. But if the goal is to bring enlightenment, I think that the mark was missed.