JOINT CUSTODY (A Multi-Year Settlement Agreement)

Pain.  Chronic pain.  It’s no joke.  It’s debilitating.  It can lead to death.  It can be physically and psychologically crushing to your soul.  Living with physical paralysis, for me, pales in comparison to pain.  If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis.  This is a pretty powerful statement if you think about it.  I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc.  Think about what I am saying. 

This is how debilitating my chronic pain is.  For anyone who lives in chronic pain, your life has been undoubtedly changed forever.  I know mine has. 

When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times.  I thought “this was the worst of it” to myself.  Wow, was I in for a rude awakening 3 weeks after my accident!

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Navigating Caregivers and Relationships Podcast

It was pretty awesome to be a guest last week Hosted by BACKBONES and sponsored by the REEVE FOUNDATION with a good friend Chelsea McDonald. We really dove into some super personal disability topics that are just not normalized in mainstream society!

It was an honest, raw, and invigorating conversation on how we handle caregiving, sex, challenges, and triumphs with our husbands. A relationship with the added component of a disability is not necessarily harder than any other relationship, but there are certainly added considerations that have to be factored in to our everyday lives, especially because we are both quadriplegics and rely on people to help us with our caregiving activities each day!

I keep noticing these topics are slowly creeping up around the country and I am so pleased to have been part of this one;

A CRUSHING DEFEAT – BLUE CROSS AND BLUE SHIELD – CREATING A RIPPLE EFFECT

You work so hard for so long on a specific project only to have it practically blow up in your face.  I’ve been working with Blue Cross and Blue Shield policy directors for the last six months and I recently received beautiful “BS” letter as they say stating that my efforts to have adaptive exercise equipment reviewed under medical necessity was not going to be an option.

I have tried to play nice, it did not work, and that’s okay.  I’ve simultaneously been working on legislation on multiple fronts to be introduced over the next few months and few years from different angles.  I always try the path of least resistance first, this does not always work out, but it does not deter me either.

If you’ve been following my health insurance battles you will want to take a close read of this one because my entire disability advocacy career started out with health insurance equity.  It is naturally a passion project near and dear to my heart and one which I will continue to fight for on so many fronts.  What will ultimately end up happening is having to create a coalition of seriously smart lawyers, doctors, advocates, etc. in years to come.  This mission is going to be measured in many years, not months.

Fortunately, my spinal cord injury has taught me the definition of extreme patience.  For this I am thankful!

I may Sisyphus rolling the boulder up the mountain only for it to come crashing down on me.  However, I will start rolling the boulder back up the mountain in real time!  I will break the cycle eventually in the name of HEALTH EQUITY, and not just Health Equality.

Check out the Article on Push Living Magazine:

A CRUSHING DEFEAT – BLUE CROSS AND BLUE SHIELD – CREATING A RIPPLE EFFECT