There’s an art and a science to pretty much everything in life and surviving for weeks on end in the ICU is no different. With a majority of medical professionals being woefully under trained in all of the secondary complications accompanying spinal cord injury, the thought of trying to stay alive while you’re in the hospital can be a daunting prospect -especially when you have to play your own investigator in assisting these professionals with your diagnoses.
However, while there’s definitely a certain amount of research, planning, and preparation that needs to be thought out by the patient when you are essentially locked into the hospital by your medical professionals; you can have a little fun with it as well. Living on the edge of life and death, as many folks with spinal cord injury will very likely attest to, I find taking a dark humor outlook on most situations to be healing for my body, and my soul.
Despite my long ICU stay in 2016, I maintained a cheery disposition, but this time I decided to do something a little bit wackier to pass the time. What pray tell did I do you may ask?
It’s hard to believe that it’s only the middle of February and with the state of affairs in the world today I try very hard to focus my energy on affecting change in whatever capacity I am able to in order to bring a little bit of light into this world. I’ve said this time and time again, but kindness, positivity, and perseverance go a long way in my book.
I would be a hypocrite if I didn’t attempt to put actions to my words. So, I have made quick work of focusing on two new Blue Cross and Blue Shield cases, which I believe are so important for so many who are disabled.
My overarching mission in these constant insurance battles is not to just simply win “stuff” from insurance companies, but rather to strategically attain medically necessary durable medical equipment that not only improves the quality of so many people’s lives, including my own, but our independence and dignity.
The challenge lies in that many of our health insurance policies are simply outdated and many of them do not factor in the special needs for those who are severely disabled. With that said, it is my goal to create a host of documents with letters of medical necessity written, so patients can just hand them to their doctors and fill in the necessary personal information.
I’m working to change the system from the inside out, but in the meantime many of us really need to learn how to operate and navigate within the broken system we are currently faced with. It’s not easy and most people don’t have the time, energy, or know-how to get things accomplished. Unfortunately, many people just take their insurance policy at its word and don’t test the system.
Change does not come from blind compliance!
We have to push the boundaries because we are, the disabled community, a very much forgotten about segment of the population in the eyes of health insurance policies.
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.
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 →
After a long and arduous 7-month road of winding adventure of denials, appeals, and out of the box advocacy techniques … I’m proud to announce I took receipt of my new power wheelchair yesterday with the seat elevator I was denied.
I outlined several detailed articles in Push Living Magazine (article 1, article 2, article 3) on the labyrinth I had to make my way through during this process.
I went to the local media and was able to land a written piece by News & Observer and a small TV segment by ABC 11’s Diane Wilson, investigative reporter, on the battle I underwent.
During this pandemic the most unlikely of things happened. I developed a laser focus and passionate advocacy mission all the topic of health insurance denials for medically necessary equipment.
Whether you have Medicare, Medicaid or private insurance, there is a process, albeit tedious more often than not, where you can navigate your way through the maze of red tape to overturn an insurance denial. You have Rights!