RISE UP

 

For every amputee who has ever felt like a number. This is for you. 

 

The government just announced an investigation that could lead to massive tariffs on prosthetics.

 

Let me translate what that really means for us.  What happens when the leg you walk on suddenly costs your prosthetist more to acquire than insurance will ever pay them?

 

Clinics close. Innovation STOPS. And we get left behind, fighting for outdated tech or facing impossible bills. As if battling insurance wasn't already a full-time job. 

 

So where is the outrage from the big patient organizations? Silence. 

Here’s the hard truth I’ve learned after two decades: The system isn't broken; it was built to work exactly this way.They don't tell you your 'local' clinic is secretly owned by a giant manufacturer. Why? Because you're not supposed to know who's really profiting from your body.  And the advocacy groups that claim to represent us? Their silence is deafening, bought and paid for by the same manufacturers writing their donation checks. 

 

To them, we're not people; we're purchase orders and patient quotas. Because of the incestuous relationship created when the manufacturer owns the clinician, the needs of the patient become secondary. They don't see our fight.

 

I'm done asking for a seat at their table. It’s time we build our own. 

I am creating a new channel for patient-led advocacy. No corporate cash. No hidden agendas. Just our voices, our power, our fight. We will share the information they hide and organize to protect our access to care.

Want in? Message me and follow this blog. I'll make sure you're on the list when we launch.

It’s time to rise up because we need to protect and empower ourselves. 

 

If you have read this far, thank you. I have heard this new venture described as AmputeeMommy gone Menopausal. Fairly apt description if it means I'm done dealing with the establishments.

Exhausted

 It's been an exhausting week as we settle into an entirely new routine. I knew that I would be tired coming home from work, but I did not anticipate the body aches that accompany this type of job. Squatting, getting on the floor and constant stair walking are not my favorite physical activities, yet they are all required heavily in my new job.

My students are all unique, entertaining and challenging. With ages ranging from preschool to high school, I get to be with kiddos from all ages. Although I've only worked with them once or twice so far, I am looking forward to our adventures this year. I really think I can make an impact, which I remind myself each evening when I'm hobbling around in pain. 

Physically I can do this job and eventually I won't be as sore. But these first few days have leveled me. Each night I've been grateful for my deep soaking tub. It is amazing how my muscles relax when they are encased in hot water. 

Timmy has done an amazing job by himself during the afternoons. He has been preparing his own lunch and making sure that he returns to class on time. I think he is enjoying the newfound freedom and responsibility because he certainly does not seem to miss me. 

Wrap Up

 Yesterday was a bit of a whirlwind as I met new students, staff and coworkers. Despite feeling out of sorts because I was in new places surrounded by new people, I quickly fell back into my O&M shoes. Situations and people may change, but the students remain unchanged. Each kiddo will present unique challenges and I think we are going to have a great year together. 

I had a great day with the kids, but my leg was achy but the time I got home. I can't remember the last time I couldn't wait to pop off my prosthesis and sit on the couch for awhile. It wasn't pain but my limb was just sore and tired. Thankfully a long bath helped ease the aches away. This will also probably be part of my routine for the foreseeable future. 

While I was working, Timmy was logged into school and barely noticed my absence. Not only did he not miss me, but he is relishing the newfound responsibility and independence. It seems that we are all ready for this new phase in our family.  

Back To School

 I am up early this morning, readying to embark on a new professional adventure.  The past few weeks have been a whirlwind as this opportunity seemed to fall together perfectly. Although I wasn't looking to return to my roots, this morning I will begin working again as an Orientation and Mobility Instructor in the schools.

Two Mondays ago, after seeing Scott off for what was sure to be another miserable day, I settled onto the couch with my email and a fresh cup of coffee. I noticed an email with the subject "Orientation and Mobility" and hovered my finger over the delete button. The nod to my first professional love took over and I eventually opened what I was sure was spam.

It turns out the email was from a recruiter who had been contracted to locate an Orientation and Mobility instructor for a local area. I replied, confirming that I am indeed an Orientation and Mobility instructor and I would love to hear more about the job. I wasn't terribly hopeful because I knew that my requirement of not starting until after Timmy begins his school day would be a nonstarter for most, but I figured it was worth a conversation. 

I was gobsmacked when I learned that the employer was flexible with the hours, offering me a position that allows me to be home for Timmy in the morning and when he gets off of school. Honestly, the hours could not be more perfect!  I am so grateful because I recognize most employers would not accommodate a 3/4 employee. 

So, after a nearly 2 decade hiatus of working full time in the schools, this morning I am going back.

Yes, I am feeling overwhelmed, scared, excited and just about every other emotion imaginable. It has been a really long time since I've walked into a professional setting knowing nobody. I feel overwhelmed with a lonely anxiety as I am getting ready this morning, nervous about spending the day with complete strangers. I've been hiding behind the keyboard for so long I am concerned I've forgotten how to be with people in real life. 

Wish me luck and please send me good thoughts today and throughout the week as we all adjust to this new adventure. 

Field Trip

 In a shift from the norm, yesterday I pulled Timmy from classes and took him on an impromptu adventure. (Before everybody comes at me, it was mostly educationally based.) True to tradition, Timmy did not know our destinations but he was delighted when I invited him to skip school with me. After jumping with delight, he dressed in record time so we could begin our adventures.

 I took him to the Udvar Hazy Space Museum, one of his favorite locations outside of Washington DC. He was delighted to return 'home' and was eager to check out his favorite exhibits. Because we arrived when the museum was opening, there were no lines for the simulators. Usually that section of the museum is very busy and I typically avoid it. But yesterday was special and I decided to include an experience in our adventure.

I let Timmy choose which simulator we were going to experience. He chose the fighter jet, which was the most complicated. I wasn't particularly worried because I can handle the jerky movements of virtual reality rides as long as I close my eyes.  So sure Timmy, let's be fighter pilots.

Crawling into the cock pit of our simulator plane, I was surprised by all of the straps we needed to utilize. I even commented to the attendant that the straps were a really nice touch. He looked at me and mumbled "You will go upside down." I assured him I would be fine because I'll simply close my eyes.

Again he warned me about going upside down before closing the cockpit door and locking us in. Strange warning I thought. But as the simulation began to rev to life I had a haunting realization- did he mean our capsule was going to go upside down?

Within 30 seconds of take off I had our virtual plane nosediving towards the ocean while Timmy and I were flipped upside down in our little capsule. Hanging like bats upside down frantically trying to figure out the controls to right ourselves. We crashed into the ocean.

The game reset, we were transported back to our normal alignment and took off again. Quickly we found ourselves again hanging upside down and laughing hysterically. The suction on my prosthesis broke and I could feel the leg start to shift. I told Timmy who was howling with laughter so much that he ended up farting, essentially hot boxing us with his noxious gas. 

We are terrible pilots but it was a lot of fun! I don't remember the last time we both laughed so much. 

 

Good report

 Yesterday Scott had an appointment with his cardiologist and received an excellent report. I immediately felt a weight of anxiety lift when the doctor said we didn't need to return for six months. It has been a difficult summer as we struggled with the medication, recovery, rehabilitation and a completely new diet. After months of change, I think we are finally settling into a quasi-comfortable post-cardiac event routine. 

Settling into a new normal has allowed me to start to relax and breath. I have spent months on high alert and my body is wearing down. I think I need to invest a little more effort into my own self-care or I won't be much good for anybody. I suppose this is an issue for most (probably all) moms. We, collectively, need to do a better job extending the same grace and courtesy to ourselves that we do to everybody else.

Here's to self-care! 

Wii

 This weekend was rough.  The constant coverage of the shooting in Utah has triggered my grief and anxiety over my brother.  Like Kirk, my brother was shot in the neck. Only when Jae was killed by gun violence, nobody cared. 

The shooting put Jae in my mind, but a series of coincidences over the weekend kept him omnipresent. Robby has been challenging his skills by 'jail breaking' previous gaming systems.  The most recent project has been reworking our old Wii, which hasn't been used in decades. Excited to test out his new features, he called us all into his room. The wind was knocked out of me when I looked at the television screen and saw our avatars from long ago. My brother's avatar was walking around the screen, animated and full of life.

The drama towards the end of Jae's life has made retrieving happier memories difficult. Seeing his avatar I was flooded with memories of the times he played with Robby. When he was healthy, he was a really good uncle. I'm so grateful that his avatar remained to remind me of those times. 

Sigh. I miss him. 

Today Scott has a cardiologist appointment. I'd be lying if I didn't admit to being scared. His blood pressure has been a struggle as of late. I'm hoping it will be a simple medication switch, but I think I will always be scared.