Losing It: Chronic Illness and Health Insurance in 2019

It’s been a while, huh? I had mostly given up on the idea of this blog.  It served a great purpose in its prime, but as I struggled with various events and changes in my life, it became something less, something a bit messy and directionless.  I started this site four days after Jackson was diagnosed with Cystic Fibrosis. It helped me as much as it helped all the people that it reached. But there came a time where it wasn’t all that helpful, I didn’t want or need everyone to know the details of our life, and it just didn’t feel like a useful venture.  So we stepped back. I reduced my outreach and education to tweets and statuses.  It was a much needed break, and it was good for everyone.  

But it’s time to come back, at least for this.  In spite of our best efforts, in spite of his dad working two jobs to maintain insurance coverage while changing roles, Jackson will be losing his health coverage at the end of the month.  And we aren’t sure how quickly we will be able to change that, or what kind of coverage he will have going forward.  

It can happen to anyone. Health care and coverage is one of the hotter issues in our current intense sociopolitical discourse. The risk of losing protections against lifetime caps, pre-existing conditions, child and public health initiatives, and more threatens people like Jackson every day. For some, the idea of losing their health care coverage means facing the possibility of insurmountable debts just to stay alive. 

It feels important to me to share this disruption in our lives, how we handle it, what it feels like, and what resources there are for people in our position. 

The day we found out that J would be losing his insurance, his dad immediately filed an application for Medicaid.  I called his social worker at Cook Children’s and updated her and his medical team on the impending changes. I wanted to make sure we had every resource and all information so that Jackson is able to continue receiving medical care and the tens of thousands of dollars worth of prescriptions that keep him the happy, ‘normal’ kid you see.

I’m gonna be honest, y’all- I don’t know if anyone reads blogs anymore. I’m hoping to add a YouTube channel for videos,because I know you want to see me vlogging from behind my seatbelt in parking lots like every other blowhard with an opinion on the internet. But I’ll also be keeping updates here because written references are still important.  I’ll post again soon about how we are covering J’s most immediate needs, what resources are available, how to access them, who to talk to should you find yourself or a loved one in such a situation, and you can hang on for the ride to see how successful we are in the long run.  

Peace out kids, it’s good to be back.