a plea.

I need to get something off my chest in this blogpost. It was not something I intended to share with the world yet (or maybe ever), but in light of the events of last night, my current emotional limbo and self-preservation seem less important than speaking out. 

You know that I have Crohn's disease. I have written about it here, here, here and here and will continue to write about how it affects my life in the future. You also know that I have previously said that the Affordable Care Act wasn't perfect (see here and here), but was at the very least a good step forward for many people. 

Last night in the middle of the night, GOP senators voted to remove parts of the ACA in their effort to repeal and replace Obamacare that included protections for children, women, vets, and people like me--those of us with preexisting conditions. Removing these protections will effectively make it impossible for me, and 20 million other Americans, to have health insurance. These people are your children, siblings, friends, family and other acquaintances. This vote sets up the ability for health insurance companies to deny me coverage because of a chronic condition I never asked for or to drop me when they've decided I've reached a lifetime maximum of health coverage. I'm not alone in this. There are stories floating around social media from others who have chronic conditions, cancer, or parents of sick children. Without a clearly defined alternative, there's no indication that our political leaders actually care about the lives of the chronically ill, women, veterans, or children (although I've heard many of them repeatedly claim to be pro-life). 

Let me state that in a way that hopefully drives the point home a little further: without this protection, I will die a very slow, very painful, very young and extremely expensive death because of my chronic conditions. 

I am 26 years old. This is not the first time I've considered my own mortality but that doesn't mean that I should currently be weeping on my bathroom floor paralyzed with fear of what is going to come in the nearer term future if this law continues to be repealed. 

Earlier this week I had a colonoscopy. They are supposed to be a fairly routine, yearly, annoyance in my life to make sure that I'm tracking along nicely with my journey towards health. I expected this one to be non-remarkable. I've been feeling great lately and haven't had any symptoms related to my Crohn's disease. 

What they found was anything but non-remarkable. 

As it turns out I am very sick. Getting close to how sick I was (or maybe worse) than when I was first diagnosed. We are still waiting on the results of tests to really know what the damage is and what I should be doing for next steps, but suffice it to say that the next 6 months to a year of my life are going to be much different than I had anticipated them being. 

I don't know if my life-saving medications will continue to be covered. With my health insurance and a patient assistance plan, one of my medications costs $5 per month. I take this medication only twice per month. Without insurance and patient assistance, it costs nearly $10,000 per month for those two doses. That medication is a one-two punch which treats both my Crohn's disease and arthritis. And it just one of 13 different medications I take on a regular/daily basis to maintain my best version of health, not including the antibiotics, steroids and pain pills that I take when there's a problem. Certainly not all of the others are that expensive but I already spend thousands of dollars per year on medications with insurance, I'm not sure I'll be able to afford any of them without it. 

This post is not about pity. Just as it's not about political ideology. This post is about my fears of a potential existence that I don't want to live. Because it won't be living for me. It will be the most horrific way to die. 

So I'm asking you, can you please help me in stopping the repeal of the Affordable Care Act? Can you call your representatives and let them know that you don't support a repeal? I know it's imperfect...I'm more than willing to discuss revising it, but that is not what current political leadership is doing. Ask them to support a revision which provides protections to those of us who will die without them.  If our leaders continue on this path, they are effectively sentencing me and millions of others to shorter lifespans filled with increased pain. 

I'm only 26. I'm not ready to literally consider my mortality yet.