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on my bathroom floor paralyzed with fear of what is going to come in the nearer term future if this law continues to be repealed.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. 

full circle

One of my goals for 2017 is to write at least one blog per week. The end of the first week of the year creeped up a little quicker than I expected and yet no blog. Hoping to remedy that immediately...

Shortly before Christmas was my graduation ceremony.

It was quite run of the mill as far as graduation ceremonies go. I've never been much of a fan of graduation ceremonies after having to play Pomp and Circumstance one bazillion times in high school and college with the band. But it was extremely special for 2 reasons:

1. I FINALLY graduated. With a degree. Not the degree I really ever anticipated receiving nor in the time frame I had originally planned. But with a degree that makes me extremely proud, gives me life and allows me to be excited about the work I am privileged to do every single day. 
2. My journey at UNMC ended in the way it began: me crossing the stage at Joslyn Art Museum in front of my family and loved ones. (insert The Lion King's The Circle of Life audio here)

My life is quite different than when I started at UNMC 4.5 years ago. It's also quite different from what I had dreamed for it to be that very first time walking across that stage 4.5 years ago. But it's really truly so much better than I could have ever imagined. 

I had a moment on that stage where the emotions of my time at UNMC quickly came flooding back: the terror of anatomy classes, the utter boredom of biochemistry, being diagnosed with Crohn's disease, the confusion over physiology, surgery, medical leave, M1 year--take 2, the love of neuro core, the looming dread that medicine (my dream since I was 8 years old) was not for me anymore, more sickness, abruptly quitting medical school and switching careers, the relief of being accepted into public health, the adjustment into a new lifestyle, the freedom to pursue things that interested me and to travel, the feeling of healing, the fear of the next steps in my career, the frustration at my capstone, and finally, the utter elation that I had finished. 

The past 4.5 years have been a lot. I really don't have a better way to explain it...there was plenty of awesome intermixed with the not-so-great and some in between things as well. But there was very little time for reflection in the midst of all of that other than what I wrote on this blog. 

So I need to thank you all for helping me survive (and thrive) throughout my tenure at UNMC. I needed this blog as an outlet for all that was going on in my crazy, wonderful life probably more than you needed to be reading any of my thoughts. I also need to thank my friends and family for being incredible support systems and for occasionally (literally) picking me up off the ground helping me move forward when I couldn't get up on my own. 

It's been a ride, but boy am I ever glad that I made it back, full circle, to that stage at Joslyn. 

Grandma + Uncle Dale
@ the hooding ceremony

My capstone adviser, Dr. Tibbits
@ the hooding ceremony

Aunt Lorraine + Uncle Dick
@ graduation

Aunt Jayne
@ graduation

 UNMC COPH 2016 winter graduates 

Annie, the other maternal & child health grad <3

Mom + Dad
@ the hooding ceremony

the very first time I walked across that stage
@ UNMC COM 2016 White Coat Ceremony
August 17, 2012