The other day I posted an Instagram story that choosing to be happy is a conscious choice. I received a message from a person who asked me a simple, yet thought-provoking, question on how I choose to be happy? This got the wheels turning as it is a really great question.
I’ve always been a very bubbly person throughout my life with a very quirky personality. I was raised to appreciate many different aspects of life. There is this one phrase I grew up with that my dad instilled in me.
“There’s always someone in life who is going to be richer than you and poorer than you.”
I’ve adapted this over the years to say that there’s always someone in life who’s going to have it better than you and worse than you. What it means to me is there are always two perspectives in life, and, more importantly, it is completely your choice which way you look at a situation.
I’m super honored to be featured in another article by the Christopher & Dana Reeve Foundation this year. There are concrete steps you can take to navigate the appeal system and I am partnering with SPINALpedia to create a website this year for a “Patient to Patient Guide To Navigating your Health Insurance Denials.” Look out for this later this year when we have it up and running!
We have to stick together and work together for you going to advocate for change in our country and in a broken healthcare system.
The other day I was working with my caregiver and I caught myself thinking about some of the things I ask for on a daily basis, and just how unbelievably bizarre they must sound the average able-bodied person.
I started to make a list of these particularly humorous statements that most people would consider very peculiar indeed! I found myself laughing out loud because I thought back to my life a decade ago and how I never would have thought I would catch myself asking people to do these particular tasks for me. To end the year on a funny note amidst a year of complete chaos I hope to leave you with a chuckle by the end of this article.
I’ve written about this topic numerous times, but when you are paralyzed you need help going to the bathroom. Plain and simple. When you (an able-bodied person) go to the bathroom you simply sit down on the toilet and poop. I, along with most other spinal cord injury folks, especially quadriplegics, do not have this luxury.
I do not have the ability to use my abdominal muscles to push out the poop. Probably too much information, I know, but that’s life. In any event, I have to put a suppository in my bum, let the poop come out, and then I have to have my caregiver put gloves on to go into my behind to get the rest of the poop out. Yes, it’s a pretty involved process, not particularly pleasant, but, hey, it is better than the alternative of going to the hospital because you can’t poop.
So, every morning during my “Morning Program” I ask some of the following questions:
1.)“How much poop did you get out of my bum?”
2.)“Okay, can you put your finger in my bum now to get the rest of the poop out?”
Mental Health. Society has come to appreciate the importance of mental health just as much as physical health in recent decades, but somehow there still a negative shadow cast over those who open up about mental challenges they may be facing. If you break your leg people openly tend to express sympathy for the pain you must be feeling.
However, if you talk about bipolar disorder, depression, anxiety, or whatever else ails you inside the complicated workings of your brain, oftentimes, people tend to form an opinion about the stability of you as a person. The leads to people forming quicker judgments about your ability to function in your job, your life, family or home. It’s unfortunate, but mental health, in my opinion, is still not a topic that gets the attention it deserves.
As many of you know I like to crack open uncomfortable topics and dive right into them. With that said, I’m going to open up about some of the serious inner demons that afflict me on a daily basis, how I deal with them, and, frankly, how I compartmentalize most of them just to get through my days.
Where does one even start reflecting back on the year of 2020? This has been a year to remember for the ages from pandemics to politics to pandemonium around every corner of the globe. The human race has endured throughout the ages and what millions of us are facing today will undoubtedly be written as a dark chapter in the history books, but there’s one overarching concept that continues to guide many of us during these dark times – Hope. Hope for a better future, hope for a vaccine from this pandemic, hope for our fellow humans to be kind to one another, and hope for the will to survive both physically, and mentally.
Each one of us has been faced with our own personal hardships & challenges, and while many of us may have trouble seeing beyond the trees within the vast forest – we will somehow prevail as we have done for thousands of years.
For me, 2020 has been a year of incredible clarity. While there are moments I feel intense guilt for thriving in such a dark time, I have finally found my purpose in life. In short, fighting for those who cannot fight for themselves. After 10 years of fighting my own personal battles for survival through the labyrinth of all of the complications that accompany a spinal cord injury and being paralyzed from the chest down, I finally reached a tipping point in my own life where I’ve come to realize how short life really is.
Recently my husband and I took a week long vacation to visit a friend in Florida. I distinctly remember one day when he was helping me with all of my bathroom duties, getting my swimsuit on, lifting me up from a very low surface bed (killing his back), lifting me into the pool, showering me by the pool, helping me with my makeup, straightening my hair, and then cleaning up. These are just a few of the things he’d helped me with that day, but the list really does go on.
The numerous amount of small things I need help with in a day seem endless whether that be filling my water bottle, fixing my feet on my wheelchair, grabbing my legs as I have uncontrollable spasticity, getting me in bed when my pain is through the roof, etc.
The day came and went, and as I was hanging out with my girlfriend I rolled back into the bedroom to find him sprawled out on the bed. He was just tired – I mean how could he not be? He was taking care of his quadriplegic wife 24/7 for 8 straight days. I remember thinking how guilty I felt for being such a burden, but not once did he make me feel that way. These are my own demons I battle with as a quadriplegic because I need full-time help every day – all day.
Over the last several years I’ve made it my mission to try and overturn health insurance denials for what I, and many of my medical professionals, deem is “medically necessary” for in-home use with my specific quadriplegia medical condition.
Often times my insurance company believes that the type of medical equipment I try and have approved, usually referred to as Durable Medical Equipment (DME) is not “medically necessary” for me, but rather an “accessory” to my life. My job is always to try and prove that their definition of medical necessity is skewed for the very small segment of the population who suffers from paralysis.
…. Recently, there were a few wheelchair users who made comments to me that I was simply manipulating the system and making it worse for everyone because I am trying to “game” the system. They were trying to say that I don’t NEED the equipment I am after, but rather WANT it …
… This really got me thinking! Am I manipulating the system? Let’s dissect the argument ….
Since winning the approval of my seat elevator for my power wheelchair through navigating the labyrinth of Blue Cross and Blue Shield’s appeal’s process by taking my story to the local news – I have since been busy making quick work of trying to get further “medically necessary” equipment approved by insurance.
A challenge many of us face within the world of health insurance and disabilities is trying to prove, and convince insurance companies that many pieces of equipment we need in our home such as specialized shower chairs, seat elevators for power wheelchairs, specialized manual wheelchairs, adaptive exercise equipment, etc. are not “accessories” as defined by health insurance companies; rather they are “medically necessary” to not only survive in our daily lives, but to thrive.
In this light, my advocacy mission to help folks learn how to be their own advocates has really taken off. I thought of no better way to teach folks how to be their own best advocate than by working towards getting equipment in my own home that is “medically necessary” approved for myself first. This way I can better help folks navigate within the private health insurance world first, then later on to Medicare & Medicaid, with respect to best practices & strategies for winning health insurance denials.
About a month ago I embarked on my next mission to see if health insurance, specifically Blue Cross and Blue Shield, would pay for a highly specialized shower chair.
Each morning I wake up at the crack of dawn, work with my caregiver for several hours to get ready for my day, and then pump out work for around 10 to 12 hours each day, continue to work my caregiver for afternoon activities, then rest, repeat, and start again in the morning.
At the ripe young age of 10 years old I attended Catholic boarding school in London, England. I’ve been conditioned to work harder, smarter, more efficiently, and just keep going. Don’t get me wrong, I have my fair share of fun, but hard work has been ingrained in me as long as I can remember.
My definition of work has changed over the years and now encompasses spending my day working professionally, advocating for those who can’t advocate for themselves, working on trying to build a large social media following in order to affect greater change, and find some kind of balance in my personal life. I’m not always brilliant at it and I know there are so many other people in life trying to juggle balance too. Continue reading →