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my bathroom floor paralyzed with fear of what is going to come in the nearer term future if this law continues to be repealed.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

Crohn's and Colitis Awareness Week

Hooray! It's apparently Crohn's and Colitis Awareness Week yet again. Last year I wrote about the experience of being a patient with a chronic condition. Today in honor of #PurpleFriday, I'll show off my newly dyed hairs. 

And I'll also let you in on a short list of things not to say to people living with Crohn's or Colitis. Many of these things apply for other illnesses as well. We know you mean well when you say these things, but often it comes across poorly. A special thanks to some fellow chronies, Martha and Shannon, who helped me to come up with the list. 

1. "You look great! You've lost weight!"<---this one is my absolute least favorite thing to hear. The converse is true also after I've been taking steroids and quickly put on some lbs. after rage eating everything in the vicinity. Trust me, you do not want diet secrets from me. 
• Bottom line: don't comment on anyone's weight. Really, just don't do it. It's almost always a bad idea, but especially not so nice to do to someone with bowel issues. 
• Also a close runner up: "You're so lucky you can eat anything and stay thin." Malnourishment is a real concern in the middle of a flare up. Often force feeding high-calorie foods is required, although I would really rather not put anything into my body at all. 
2. "Is it okay for you to eat that?"/"I bet if you cut out dairy/gluten/meat/GMOs out of your diet you'd be fine." Each person's disease is different. And each day is different. There are certainly foods I stay away from (popcorn and seeds of any kind) but we all are our own experts on the disease and how we react to foods. 
3. "You don't look sick."/ "You seemed okay last week." This one is big. And not just for IBD sufferers. Crohn's and colitis are part of a group of diseases lovingly called "invisible illnesses" because you really can't tell from the outside what's going on. This includes multiple sclerosis, lupus, fibromyalgia, chronic fatigue syndrome, depression, migraines, Lyme disease, PCOS, endometriosis, etc. I'm really putting forth an effort here to appear normal. It's quite possible I spent the better part of my day just getting ready to go into public. Some days are harder than others though--fake it 'til you make it (and then pay for it later with fatigue). 
4. "My friend/cousin/random acquaintance was cured by essential oils/yoga/meditation/deep breathing/vitamins, you should do that."/"Just take Tums or Pepto!" I know you're just trying to help. But I promise you, I've tried everything. I swear to you, that no one enjoys swallowing handfuls of pills less than I do. And neither Tums nor Pepto is going to help me any. Also, as of right now, there's no cure. 
5. "Why are you so tired? You didn't do anything today."/"If you're tired just take a nap or drink some caffeine!" Oh the fatigue. The combination of medication, your own body trying to destroy itself, and the desire to just be normal really does add up some days. Although it sounds so ridiculous, there are days where I have to nap after taking a shower because I'm already exhausted. And then I feel guilty about being fatigued, so then I overdo it and thus the fatigue cycle continues. This was pretty much all of medical school on repeat. P.S. Adding caffeine is really the worst thing to do for gut stuff...it definitely doesn't make the problem any better. 
6. "It's just Crohn's. It's not like it's cancer and going to kill you." I've never personally had this one, but I can resonate with why it would be frustrating. And truthfully, when you're really sick there are moments when you wish it would just kill you already because living every day for the rest of your life with it sounds like the worst hell of all. But I also want to point out that the side effects of the medications and the disease are actually very real and can be life threatening. 

And here's a list of things to say or do instead.

• "You look healthier than the last time I saw you. Are you on the road to better health?" Make it not about size, but on health and well-being. Or even better...don't comment on outward appearances at all. Just tell us you're happy to see us!
• "I'd like to hang out. You choose the venue--we don't have to eat/go for coffee if you'd prefer not to." The disease is isolating enough as is. We need you to still stick around and invite us to things--even if we've missed the past 10 things because we were ill--we won't feel pressured, just reassured that you're still there for us and supporting us. 
• "I know you're in the middle of a flare, can I come over and do XYZ task for you (load the dishwasher, vacuum, go grocery shopping)." Make the offer specific and recognize that we may not have the energy to hang out for hours afterward, but that we sincerely do appreciate the help. 

I promise you that we are not expecting perfection, but even a little bit goes a long way. But most importantly, if it sounds like you're policing my body/food intake/bathroom experiences, please don't (unless I'm an infant, in which case please continue to do so). Just ask how you can better support me instead! 

Great news for Nebraska!

We get this daily email with updates about things that are going on at UNMC. And today the most wonderful news was attached!

Nebraska Medicine (the hospital associated with UNMC) received a large donation from the Scott family to become one of the top centers in the U.S. for treatment and research for inflammatory bowel disorders (IBD). Crohn's disease and ulcerative colitis are the two primary autoimmune disorders classified under IBD. The two conditions affect an estimated 1.6 million Americans.

As many of you know, I have Crohn's disease and I'm so excited that this incredible research center is going to be literally across the street from me now. They're going to recruit new physicians, researchers, support staff and others. And most importantly, they are going to integrate care into a team-based approach, which from a patient perspective feels less-than-optimal at the moment.

This is a HUGE win for Nebraskans with IBD--soon we will be able to be enrolled in research trials to someday find a cure (or at least legitimate long-term treatments).

You can read the whole announcement here.

saying goodbye to cubicle MA58: week 10

Goodbye sad, undecorated cubicle!

My final week of my internship felt surreal and also went by so quickly! I had quite a few projects to finish up so I was frantically finishing them, while trying to enjoy the last few days with my Chicago peeps. I worked on a background project about backpack programs for kids, finished up more with the social media audit, wrote a lesson in the gender and hunger toolkit and put some finishing touches on a few other projects I was working on. The interns also were able to have a conversation with Heidi Neumark, the author of the book we all read this summer. It was such an honor to be talking with her and to hear how her ministry has progressed since the writing of Breathing Space. (Quick plug: she has another book coming out this fall...everyone should read it!) Previously I mentioned that I was guest blogging and the first guest blog post came out this week! Read it here. It's about my experience with food and communion as someone with Crohn's disease. What an excellent, full summer! I just wish it would have slowed down a little bit. 

This week was also the ELCA's webcast of Confronting Racism, which was, I think, a good place for the greater Church to start the conversation about racism in our congregations and in the world. It's unfortunate that more of us haven't been talking about it in the past, but I suppose we need to start somewhere. I know that many people tuned in, but I wonder how many people from my congregation, or from Nebraska did.  

Robin brought Dunkin Donuts...
my first ever and now I'm hooked!

look at how huge this pieces of BBQ seitan pizza is!

I got a few dance classes in before my time in Chicago ended. And also did plenty more reading on my commute: Dad is Fat (Jim Gaffigan), Son--Giver Quartet, Book 4 (Lois Lowry) and Queen of the Road: The True Tale of 47 States, 22,000 Miles, 200 Shoes, 2 Cats, 1 Poodle, a Husband, and a Bus with a Will of Its Own (Doreen Orion). I finished up West Wing (yes, I know both impressive and pathetic) and successfully procrastinated packing up my stuff until the very last second. 

I have much left to say and probably more to learn about my summer in Chicago. This week was one full of reflection (and resume updating!), but suffice it to say that my summer away was exactly what I needed. I'm quite sure I'll be back at some point...ELCA World Hunger can't get rid of me that easily! :) 

Elly's Pancake House: black cherry blintzes

Probably not all that unsurprising, but we celebrated the end of our (the interns) summer by going out to brunch with the whole team! I was gifted with wonderful sparkly things (one thing now decorating my new cubicle!) and a journal that says "Be Awesome" on the front. I will write more about my plans for that journal at another time--the plans are oh-so-grand! 

Furious Spoon: vegetable ramen

Jeni's Splendid Ice Cream: milkiest chocolate
and salted caramel sundae

Amtrak thinks it's so fancy with it's freezer dessert
and plastic monogrammed plates. 

The Amtrak ride home itself was pretty uneventful, but I did get to see all of the little towns along the route speed past, which really got me excited to be going home. Getting to my destination was a bit of a predicament because apparently they stopped checking baggage to my destination and I had no idea what to do with my 5 huge bags. (PS a VERY special thank you to Sharon who took me to the Amtrak station! And a bigger thank you to my Mom who drove several hours to come pick me up at a station that does check bags!) I sat next to a girl who thought everyone in Omaha rode horses and it was in the middle of the country. And I stood in line with a boy who thought Nebraskans spoke some sort of Germanic language (I suppose historically he's not all wrong on this one), so I was an impromptu ambassador for the state touting all of it's wonderful qualities!

When I got home I drove all around the state for doctor's appointments and finally to Omaha to move in to my new apartment. The open skies, uninhabited roads, fields upon fields of corn, and small town Nebraska were just what I was hoping for as a "welcome back" from the big city. It's good to be home now and back to school, but I'm so thankful for my summer away.

Highway 30.
Look at how perfect those clouds are!

Take Steps for Crohn's and Colitis

I'm so excited because finally the pictures are in from our walk the beginning of June! Thanks to everyone who supported me by getting a t-shirt or coming to the walk! 

Team Intestinal Fortitude.

Megan is REALLY serious about power walking. :) 

The Burrs bringing up the end of our group with the babies!