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.

Wednesday, March 29, 2017

ABCMouse Mom

Yesterday was rainy and dreary, forcing us to stay inside most of the time. After my whimsically decorated and artfully laid out playroom was utterly destroyed, a task that hurricane Timmy managed to complete in mere minutes, my little destroyer moved his attention upstairs. Desperate to keep further destruction at bay, I logged onto the computer.
Timmy, like most little kids, is fascinated with computers. He was more than willing to cuddle up next to me to play on his favorite website. While I'm not sure he fully understands all of the educational games on ABCMouse, he does enjoy watching the computer chickens cluck around the farm. At that point in time, I was just happy that he was still and quiet for awhile. If it took computerized cluckers to achieve that zen moment, I was more than happy to boot up the laptop for him. 

Before I became a Mom I had a lot of opinions concerning the use of computer games and television with children. I was judgemental and quick to lay blame on lazy parenting. Then I experienced my first rainy day with a toddler and my perspective completely changed. I have become the "lazy Mom" I had previously scorned and so ignorantly judged.

Oh, irony will never cease to amaze me!

Tuesday, March 28, 2017

Defining My Rights

A few weeks ago Dave (my podcast partner and friend) and I were approached with an interesting challenge: to develop an Amputee Bill of Rights. At first the task felt overwhelming, but we decided that the process would be fascinating. Without conferring with each other, we each developed ten core principles that we believed every amputee deserved to expect. Only after we each completed our list did we share our ideas and thoughts.
This exercise forced me to reflect upon what I really valued and believed. What do I want for the limb loss community? What do I expect as a right versus something that might be negotiable? In the end I carefully chose those principles for which I would fight and advocate.

This exercise was cathartic as I was forced to become retrospective. While I was evaluating every aspect of my life, questioning what was a true entitlement, I uncovered clarity. I now have a concrete list that will become my springboard for future work.

As expected, Dave and I had several core principles that were nearly identical. About half of our principles were vastly different and unique to our life experiences and perspective. Dave focused more on insurance and access to devices whereas I tended towards addressing issues that were more personal in nature.
After much back and forth, we managed to merge both lists into one document. Our Bill of Rights is still in its infancy and we are seeking input from the community. What would you add to the list, or what would you take away? I would love and appreciate feedback.

Monday, March 27, 2017

On Trend

Being trendy has never been one of my hallmark traits. My fashion leans towards the comfortable, my taste in music is narrowly defined and I don't understand (nor do I particularly care about) references to reality show stars or the majority of television dramas. I wouldn't go so far to say that I exist in a vacuum, but I am definitely not one to change because of the latest issue of Vogue or because of a new celebrity trend.

Although I tend to be stagnant against cultural trends, I try to stay contemporary with political issues. This is especially true when an issue may impact the limb loss community. Last Thursday, as it became clear that Essential Health Benefits were in jeopardy with the revised AHCA, I had two distinct thoughts.  At first I was horrified with the prospect of the community suffering such a significant blow to quality prosthetic care. Almost simultaneously, I felt an unexpected sense of vindication because something that I had been warning might become a battle had quickly materialized. For once, I was actually ahead of the curve!

Of course, having Essential Health Benefits in peril was not a prediction I wanted to see realized. Friday was tense as I waited anxiously awaiting for tidbits of news. When it was confirmed that the entire bill was pulled, I nearly cried from relief.

At this time prosthetics will continue to receive EHB status. I'm delighted, but I am realize that the fight will continue. With so much at stake, I really wish I hadn't been on trend with this issue.

Friday, March 24, 2017

Two Years

I'm waking up this morning feeling sad, but I knew going to bed that today was going to be difficult.  It has now been two years since my Dad died, but sometimes I feel the loss so profoundly that the grief feels fresh and new. It is hard to believe that it has been two years since I've heard his voice. I wish I could pick up the phone and call him, to seek his advice or just to tell him about the kids. It hurts when I realize that his phone number now rings to somebody else, and that I won't be able to talk with him again. 

Today, whenever I feel sad I'm going to redirect the grief into doting and spoiling my kids. We're going to play some extra games, make some cookies and just spend time having fun. I don't think it will be hard to convince Robby to curl up on the couch with me tonight to watch Karate Kid (again.)  I know that my Dad would prefer today be spent doting and spoiling the children (his grandchildren) instead of dissolving into an emotional mass and crying.

I'm going to try to get all of my crying out of the way now so that I can be at least quasi-productive today. If I can stay busy enough, hopefully the anniversary will pass quickly.  I don't know what else to say, except that I miss my Dad.

Thursday, March 23, 2017

Today Will Be Better...

Yesterday was not my best demonstration of parenting.  Timmy woke up obscenely early (3:30) and could not be rocked back to sleep. He didn't feel well and was tired, a combination which always leads to a crabby toddler. Nothing I did could soothe him, and he was just plain miserable all day.

We spent an inordinate amount of time flipping between Thomas the Train cartoons ("Oh bother!") and Paw Patrol.  I was exhausted from getting up with him, so my affect wasn't much better than his. Basically we were two grumpy and tired souls trying to get through the day until it was time to go to bed.

Hopefully today is better for both of us. It is 6:30 and he is still asleep.  This is a rare for him, and I'm taking it as a good sign that he is catching up on some much needed sleep.  Because he slept well, I was able to get to bed early. Today will be better because he deserves a happy Mom, and I miss my sweet little mischief maker.

Wednesday, March 22, 2017

Weight Loss Drawback

Since January I have lost nearly 30 pounds. While I'm delighted with my weight loss, it has not come without a cost. All of a sudden my leg doesn't fit, and I'm struggling to stay inside my socket.  My walking has been slowed because I worry that I'll step out of my leg entirely if I'm not deliberate and careful. I feel like this situation is the epitome of no good deed goes unpunished!

I have worked so hard to shed the pounds and I'm frustrated that my efforts to become healthier are directly responsible for my mobility issues. Where most people just need to change jean sizes when they lose weight, I need major socket adjustments for each 20 pound fluctuation.  A shrinking bum is something to be celebrated, but a reduction in limb size is not nearly as fun. Unfortunately there is no way to lose weight without impacting the girth of my limb, but that doesn't mean I have to be happy about it.

I am going to need to get a flexible liner made for the inside of my socket. Hopefully this will tide me over until my weight loss is complete, or until I lose enough to completely justify a new socket. I hate wearing a leg with the flexible liner, but I detest falling more so I will suck it up and wear it.

I've put a lot of work into losing the weight and I'm trying to not become discouraged by my ill-fitting leg. I know that the need for a new socket is a milestone in my weight loss journey. I am not yet at my goal weight, so I expect that this won't be the only time I shrink out of my leg. Looking on the bright side, at least I need a small leg instead of a bigger one!

Tuesday, March 21, 2017

Writing an Investigational/ Exerimental Appeal

One of my great professional pleasures lies with writing and winning appeals for prosthetic devices. Insurance claims too frequently are subjected to the rubber stamp denial in a quest to deter patients or, at the very least, to delay payment.  This approach must work or the industry would change tactics. I abhor the thought of amputees in need of a prosthetic being bound by needless red tape.

I wish I could lay claim to the method I use when writing an appeal, but it was taught to me by my friend and podcast partner Dave. The method is brilliant in its intuitive simplicity, yet the nuances of presenting information in a specific method stacks the deck in the patient's favor. In this week's episode of amp'd, Dave and I presented the method for writing a strong appeal for an insurance denial on the basis of investigation or experimental.

One of the lingering side effects of the Medicare LCD from 2015 is the resurgence in vacuum technology denials based upon being experimental or investigation. The LCD proposal opened the door for insurance companies to change their stance on this thoroughly vetted suspension system. Although elevated vacuum has been around and accepted for more than a decade, and the benefits have been well documented in numerous research studies, patients are being once again being denied this previously accepted suspension system.

We recorded this episode in hopes of helping those who are facing experimental and investigational denials. While we based our sample appeal on a vacuum denial, the system can be tailored for any device deemed experimental or investigational. Our goal is that the tools we provided will empower patients to fight and appeal their denials. As always, we are happy to answer questions!