Feeling OLD

I am so relieved that today is Friday. I don't have exciting plans for the long weekend; perhaps the fact that I am lacking any plans at all is the reason I am excited. We have been in constant motion for so long that the prospect of just staying still and being quiet at home sounds like a vacation. There is a slew of housework that I can finish this weekend, but I am leaning towards letting the dust bunnies breed for awhile so I can veg out on the couch and watch movies with the kids.

I don't know why this week has felt like an eternity. Timmy has been a handful, testing my patience and requiring constant attention. I know that much of his behavior is a combination of both his age and to a reaction to his medication, but he has left me completely drained at the end of each day. He is lucky that he is cute and endearing, because that is probably the only saving grace keeping me from the brink of insanity.

The past few days have reminded me that I'm not a young mom. I'm middle aged, and I feel every bit of my 42 years. I can't help but wonder if I was younger, and if I had my biological foot, that maybe I wouldn't be so tired at the end of each day. Of course, both ideas are silly to entertain because neither situation can be rectified. Trying to look on the positive, at least I am able to bring experience and perspective to motherhood. Hopefully that will make up for the exhaustion!

Love him.

A photo posted by Peggy Friedman Chenoweth (@amputeemommy) on Jan 12, 2017 at 10:04am PST

He is definitely mine.

A photo posted by Peggy Friedman Chenoweth (@amputeemommy) on Jan 12, 2017 at 3:05pm PST

Hiding Mode

This week seems to be moving at a snail's pace. I'm not sure why I'm so anxious for Friday to arrive, but for some reason I'm really looking forward to the weekend. I find myself hoping for cold weather so that I can curl up in front of the fireplace while Timmy is playing with his trains. I think I just want to retreat and hibernate for awhile, and it is more socially acceptable to hide over a long weekend than it is during the work week. 

Today the weather is supposed to be unseasonably warm, which should make my little Timmy happy. He loves little more than running around outside, getting covered with dirt and exploring everything around him. I just love his little spirit, and this developmental age is so much fun. Tantrums aside, I adore watching him grow and learn as he is making new discoveries daily. Everything excites him, and through his eyes the mundane is magical.

If the afternoon is as beautiful as promised, I'm going to surprise the boys by taking them to the park after we pick up Robby from school. Today should be the perfect day for Robby to get some drone flying practice under his belt, and I'm sure that Timmy will love watching and cheering. If I can't hibernate and hide away, going to the park with my kids is probably the next best thing. When I am with them, I'm able to disconnect from all of the stresses and anxiety that normally taunt me throughout the day. I'm able to just be in the moment, and be happy. Right now, that's exactly what I need.

Inexhausible Energy

Yesterday Timmy was full of mischief.  I didn't need to worry about exercising because keeping up with him was absolutely exhausting. The day started off normal, but an allergic reaction quickly sent everything into a tailspin. Usually his allergy medication makes him drowsy, but occasionally it has the opposite effect. Yesterday was definitely one of those days.

Timmy was literally jumping off anything that provided altitude. He happily tried to scale up our brick wall in the entry way. (Although I was by no means happy with his attempt, I must admit to being moderately impressed with his ability. He managed to climb up at least 5 feet before I found him and pulled him down.) 

 

I spent the majority of my day trying to distract him into a less destructive activity. Most of the time my attempts were rebuffed with great prejudice as he took of sprinting in a tornado of chaos. His attention span was fleeting and he an inexhaustible supply of energy.

Hamlet is still small for his age, but my goodness he is strong. It turns out that he can push our sleeper sofa across the living room, a feat he happily demonstrated throughout the day. I spent a good hour carrying him, planking and screaming, up the stairs in an attempt to keep him from superman leaping down to the landing. He would appease me by playing with his trains for a few minutes before taking off to try to base jump from the stairs again. The polar opposite of Robby, my little Timmy has no fear.

He pushed all of my buttons, and his limits, throughout the day. The afternoon hours felt like an eternity as I waited anxiously for Scott to come home. Almost as soon as he walked in the door I took leave to go to the bathroom. It wasn't physically necessary, but nobody was the wiser. In reality I enjoyed the solitude and spent 30 minutes just eating chocolate and reading a magazine.

Pink Dragons

After much conjoling from both Robby and his Taekwondo instructors, yesterday I finally acquiesced and took the "Pink Dragons" class. Robby was excited for me to participate, but I know he was looking forward to watching the tables turned on me. He rather enjoyed sitting in the chairs watching me sweat and stumble through physical challenges. 

I did my best, but I definitely wasn't graceful. I felt like an unwieldy cow trying to perform Swan Lake. Trying to hit a punching bag, I felt out of place and out of my comfort zone. But I wanted Robby to see that I'm not a quitter and that it is important to try new things even when they are difficult, so I stuck it out until the end.  I would have rewarded myself with a cupcake for surviving my first class, but two things stopped my celebration. First, I couldn't move my arms to bring the treat to my mouth. Secondly, staring at myself in full length mirrors while trying to work out was not a flattering view. I was sadly reminded that I would benefit from fewer cupcakes and more workouts in my life.

The class is once a week and I'm hoping that I'm able to move my arms by the next time we meet. I do have to say, even though I'm incredibly sore from the workout and depressed by the image in the mirror, I did enjoy myself. Once I put my anxiety and self-criticism to the side, I found out that I like punching things. I can see how this class could help me channel some of my frustrations in a healthier way!

#DontExcludeAmputees

One thing everybody seems to agree on is that the Affordable Care Act, as we know it today, is going to be a thing of the past. The Republican Congress and President-elect have vowed to repeal the legislation. With the details about any replacement legislation hazy, it is time to rally the limb loss community around two important issues. 

Since 2010, prosthetic care has been considered an "essential benefit." Essential benefits are not subject to lifetime limits or payment ceilings. Because of this distinction, insurance companies can no longer subject their limb loss patrons to archaic and debilitating payment caps that were rampant in plans before 2010. Before the Affordable Care Act, $2,500 maximum benefits and $50,000 lifetime benefits were commonplace when prosthetic devices were covered by a plan. 

With a repeal of the ACA on the horizon and lacking another concrete plan to take its place, the categorizing of prosthetics as an essential health benefit is in limbo. If prosthetics lose this classification, coverage will likely revert back to the pre-ACA norm. In other words, access to prosthetic devices will be dependent upon the ability for the individual to pay the balance out-of-pocket.

Consider that a $20,000 prosthetic leg, with a $2,500 yearly cap, leaves the payer with a balance of $17,500. With devices breaking down and wearing out, it is conservative to assume that a new one will need to be purchased every five years. All other costs incurred with prosthetic use, including liners and sleeves, will be the sole responsibility of the patient. This financial burden will force many to forgo prosthetic care not because they lack the desire or the ability, but because they cannot afford to walk. Add a lifetime cap of $50,000 into the mix and many experienced amputees will no longer be able to rely upon private payer insurance to help fund their medical devices.  (Although it is more money up front, research has proven that providing individuals with the prosthetic devices they need actually results in lower insurance costs over time. More information can be found on the Mobility Saves website. www.mobilitysaves.org)

The future of prosthetics as an essential health benefit is in limbo, but there is still time to act. I am encouraging everybody to write to their Senators and Representatives, asking them to keep prosthetic care as an essential health benefit in the plan developed to replace the Affordable Care Act. Congress is taking up this issue this week, and the time to act is now! 

I realize that many are uncomfortable writing to their elected officials, but it is paramount that the limb loss community's voice be heard. Dave, my podcast partner and friend, and I developed some tools to help facilitate the outreach. On our new website you can access a template letter that can be downloaded, personalized and emailed to your members of Congress. (We've even provided links to find the email addresses for your elected officials.) 

Maintaining the essential health benefit status for prosthetic devices is paramount for the access to care and the opportunities and health benefits that come from mobility. Please find a few moments today to send the email expressing your support for maintaining essential benefit status in the replacement legislation. We need to make sure that they #DontExcludeAmputees!

Dave and I recorded a podcast discussing our concerns with maintaining essential benefit status.  We encourage you to listen (even though I abhor the sound of my own voice.)