On being a patient

Evidently this week is Crohn's and Colitis Awareness Week. I had no idea! I'm pretty aware of my Crohn's disease all weeks of the year, so I guess I didn't realize there was a special week dedicated to it. I'm not exactly sure how one celebrates such a holiday...usually I'd make a cake or something, but adding food to the fire that is my belly doesn't seem to be the most productive sort of celebration... ;)

Well anyway, in honor of the week I thought I'd write about what it's like to be a patient in our very broken medical system. At the onset I would like to make it very known that in NO WAY am I looking for sympathy for my experiences. While they may not always be the most fun, the reality is that I am living with a chronic disease and this disease has good days and bad days. Luckily for me, the vast majority of my days are good. I also would like to make it known that I have been utterly lucky to know the physicians that I know and to be health literate enough to talk to them about what is going on inside my body. Many Americans are not this fortunate. And they also don't understand the system well enough to know where to go when they need help navigating it.

Earlier this fall I had my first Crohn's related ER visit. I was having a range of symptoms including a rapidly increasing fever and quite a bit of pain. I can "circle the drain" as they say pretty quickly, when I have a fever over 102, so I decided to head to the ER. Admittedly, I know just enough about medicine to be dangerous (no, actually you cannot hear my bowel sounds through 4 layers of clothing including a sweatshirt and jeans), but the most astonishing thing is that the ER doc told me that I didn't have Crohn's disease. EXCUSE ME?! I'm sorry that in the ~6 minutes (of a 5 hour visit) that you spoke to me that you decided I didn't have the typical presentation of Crohn's disease and so you assumed my 2-year diagnosis was invalid. Oh, and you spent most of that time arguing with me about a "Crohn's medication" that I was on, which I, in fact, was not on and is not even a Crohn's medication. He refused to call my GI doc (who later was super pissed about not getting a phone call), even though I provided his cell number. He also couldn't manage to fax/email the SOAP note and discharge plan to my doc, so when the nurse printed it off and handed it to me, I read it. Interestingly he charged me and wrote all about many physical exam findings he discovered...even though he never actually touched me. He was also amazingly unconcerned with lab findings that sent my GI doc into a tizzy instantly. While I am thankful for the morphine I was eventually given, the visit ended up being a several thousand dollar waste of time. 

If only the ER experience was my only one. But alas, just a few weeks before that I ended up waiting at the hospital pharmacy for over 2 hours for a prescription because the e-prescribe system didn't recognize my pharmacy as a place that existed. Somehow my meds were initially sent across town to a pharmacy that I've never been to instead of the hospital pharmacy, but of course the hospital pharmacy staff wouldn't call the physician to see why the prescription wasn't coming through. Instead they just asked me to wait. Finally I got frustrated enough that I dealt with it on my own. Unfortunately, they still can't e-prescribe to my pharmacy. Still not sure who to contact to rectify that one...

Or the time that my antibiotics were called into a pharmacy that I no longer go to (without my knowledge), so when I went to my actual pharmacy they didn't have the order. They were kind enough to figure out where my meds actually were. By the time I trekked across town to the pharmacy that actually had the meds, the pharmacy was closed for lunch. And an hour later when they opened, they informed me that they only had 2-days of the 10-day prescription. And when I went back to get the other 16 pills 2 days later (after calling ahead and verifying that my prescription would be filled and ready), the pharmacist dismissed me and told me that she didn't have the meds and wouldn't have them for several more days. Uhm, no.  I was guaranteed that they would be here in two days, and only a few hours ago I was assured it was ready. She quickly, and amazingly, found the rest of those 16 pills like magic!

So those examples are only within the past two months. It's amazing the hoops I jump through. And I am lucky to have practically no barriers to accessing care. I can't imagine what it would be like to have them. Oh, you don't believe people have barriers to accessing care? Well let me just put on my public health hat and jump on my soapbox. Here's a list; it's far from comprehensive:

• Do I even know that I need to go to a doctor?
• Do I have insurance? (yes, this should widely be taken care of with the passage of ACA, but there are still people falling through the cracks...)
• If I have insurance, can I afford the co-pay and/or deductible?
• Do I have a physician/provider that I'm already seeing? Do I know how to go about finding a physician/provider to see?
• Do I have transportation to said physician/provider's clinic?
• Are the clinic hours during my work hours? Will my boss let me take time off for a doctor's appointment?
• Can I afford to not work while at the clinic?
• Does the clinic speak the same language as I do? Can I make an appointment when I can't even communicate with anyone? 
• What if there are cultural barriers between male/female interactions depending on the medical issue and my provider doesn't understand them? 
• I made it to the clinic and I managed to scrounge up money for my co-pay, but I'm 20 minutes late because I took public transit and now the clinic won't see me and I have to re-schedule. My work will fire me if I take off time again.
• The physician only has 8-12 minutes dedicated to seeing me. I have a problem list of 10 items. OR I need to have my chronic disease diagnosed, but no one has taken the time to hear the full 10 year story about what is going on, so they just assume it's something it's not (this happens a lot for Crohn's and Colitis patients). 
• I'm not health literate enough to understand what the physician/provider is asking me to change in my lifestyle. 
• The doctor/provider ordered a bunch of tests to be done at another time. Do I have the time/transportation/money for them?
• Medications were ordered for me. Do I have the money to pay for them? What if I need to re-fill them every month, do I have the resources for that?
• Does my insurance provider cover my medications? (Mine didn't want to cover one of mine. After a several month battle they agreed to cover it...it's still supposed to be ~$3000/month with insurance! Thank goodness for medication assistance programs!)
• Do I understand how to take my medications? 
• If I have multiple medications, what are the drug-drug interactions? Do I have to take them all at a precise time of day each day or else I have very bad consequences?
• Am I scared of the physician/provider? Have I had negative outcomes before and am afraid to repeat them?
• Are there stigmas associated with my problem that I don't want people to know about (especially true in small towns)? I know my physician socially, will he/she judge me for this issue?
• Do I have several physicians/providers that I see that don't communicate with each other when they make changes to my medications/treatment plan? Is someone coordinating my care? (I think this is done much better in smaller communities than in academic institutions...here you have to make another appointment with your other providers, pay the co-pay, take off work, etc. In Hastings, they usually just call each other up and consult. It's awesome!)

***And all of this is assuming I have an active problem. It doesn't include preventative services...IF I even realize I need them. 

So being a patient isn't always the easiest. I don't know how to fix our medical system, but I do know it's broken. I knew it while I was in medical school, but now I'm gaining a different perspective of the brokenness.  I am SO fortunate to not have barriers to accessing medical care. Yes, there are so many examples I could list of frustrating situations over the past few years, but at the end of the day I know that I can get medical care and that it will not put me into bankruptcy because of it (at least not yet...knock on wood that it won't ever happen!). Unfortunately that's not the reality for many. Acknowledging that these barriers exist for people is a good first step. And now let's work to do what we can to reducing the number of barriers experienced by people. 

TAY-HAAS

I'm doing it. I'm finally writing about when I went to Texas in...uhh...the middle of October.

My home for the weekend. Worship en Español!

Yikes.

That's really embarrassing. Where has time gone?!

Okay, let's get down to it. In October, I flew to San Antonio, Texas with 3 other Nebraskans. Interestingly enough we were on the same flights and together for over 12 hours before I met any of them...let's just say that I'm not the most observant person when my day begins before 3 am. Well anyway, we drove a couple of hours to Eagle Pass, which is 1 mile from the U.S./Mexico border. We stayed in a nice hostel provided by an ELCA congregation. The purpose of the meeting was to bring leaders in hunger, global mission and justice from Nebraska, Kansas, Texas, Arkansas, and Oklahoma together for conversations about what is working in their areas, exchange ideas, reflect (and possibly make steps to change) unhealthy action, and to discuss how each of us approaches our lives/ministry differently based on the generation we were born into (yes, we have characteristics of our generations that maybe don't apply to us so well..but how does it apply to our peers and how does that affect the ministries going on around us). Additionally, since the border was such a physical presence at the meeting, we did discuss migration, specifically the migrant children that have been seeking asylum in our country.

The "wall".

An extremely powerful moment happened when we headed to the border...to the "wall". In reality, it's a fence. And not even a fence that is continuous. And it's on the U.S. side. There's actually probably a good half mile between the fence and the true border. The in-between area on the U.S. side is sort of a park for people to play soccer. And there's a pretty large parking lot, too. Supposedly there's a really nice firework display there on the 4th of July, which brings up all sorts of interesting thoughts as you can't exactly miss the 34 X 60 m Mexican flag (it's the largest flag in the Western hemisphere!) flying the background. For such a contested area, the border was quite serene the morning that we were there. A few youth soccer teams were practicing before a game. Truly the loudest thing that happened was the border patrol guys getting in the airboat and speeding down the river to see if anyone was stranded and needed rescuing. And it was SO loud when that was happening. Deafening. What a visceral moment.

The Mexican flag, as seen from the U.S. border

Undocumented Jesus

Later we watched a documentary about the community before the wall and the predictions that local residents had about what the wall would do to the community. You have to understand that Eagle Pass and Piedras Negras (the town on the Mexican side) are literally one mile away from each other. They are the same community, in essence. In the documentary, there was a priest at a local church talking about the "Undocumented Jesus". I guess a few years ago the border patrol recovered what they thought was a person from the middle of the river. Turns out it was a 6 foot sculpture of Jesus. It made it's way to the police station and become somewhat of an idol. Later it was given its name and moved to this Catholic congregation where it still resides. There are all sorts of theological discussions to be had about the "Undocumented Jesus," but I will just leave you with a photo.

We had someone come from Lutheran Social Services of the South to talk to us. They are contracted via the U.S. Government to serve the migrant children that are coming to our country. They work to place the children into homes of family members that are already here (85% of the kids) or into foster care (15% of kids). They also provide legal assistance, medical care, education, safe homes and spiritual care. 10% of the children who entered our country this year were served by LSS (they are 1 of 3 groups doing this work). I think that's amazingly impressive. He told us that the majority of the children/youth are coming from El Salvador, Honduras, and Guatemala. They are leaving their families and native countries because of hunger predominantly and coming here for education and work. Their trips can take anywhere from 2 weeks (the more wealthy youth) to 6 months or more (the youth that have to stop along the way to work to make money to pay for the next leg of the trip). It was quite the humbling and eye-opening conversation, to be quite frank. While the masses of children crossing the border have slowed for the fall and the winter, many predict it to start back up again in February and March, so this isn't an out-of-sight-out-of-mind situation, no matter the lack of widespread conversation it is currently experiencing.

While we were in Eagle Pass, the congregants of San Lucas cooked meals for us. Let me just tell you that I ate well. I'm having dreams of fresh tamales as I type. I might need to stop for a bit to make myself a snack actually... They were so hospitable and made vegetarian meals for me (and Mikka!) as well. Yum!! We were so fortunate that they also worshiped with us as a community on Saturday night and Sunday morning, too. Incredible services to be part of. 

Nachos!

Sunday afternoon we headed to Piedras Negras (the community just across the border) for the International Nacho Festival. Apparently Piedras Negras is the birthplace of the "Nacho". Legend goes that there were two travelers that were shopping in PN for the day and either came too early or too late for food. They were starving and so they went to a restaurant and begged the waiter to make them some food. He didn't have anything but some tortillas, cheese and jalepeños, so he quick put the tortillas in the fryer and shredded the cheese. The women were so ecstatic and loved it so they asked him what he called it. His name was Ignacio, "Nacho" for short, and so he called it "Nacho's Special." Thus the Nacho was born. I have to say that I prefer my nachos to be smothered in cheese, fake taco meat, avocados, salsa, sour cream, etc, but it still was an awesome experience! The people in charge of the festival even came over to give us free t-shirts (how often do people from Chicago, Nebraska, and all over Texas make it to their fine celebration...?) and they got some free publicity out of it too. I have to say that I'm still partial to the Kool Aid Days festival in Hastings though. 

Oh hey, I'm an International Nacho Festival international star!

The whole town was decorated for the festival and there was some sweet sawdust art in the road too.

The Mexican flag, as seen from the Mexico border

When we arrived in PN, the big flag was flying, but we we're preparing to have rain, so the military came to take it down. Wow. That was absolutely an amazing sight to see. That flag is B.I.G. And truthfully it didn't take near the amount of time I expected it to for it to be completely loaded.

The first steps to loading. 

Loading the truck. 

These men are not small men. But they look teeny
tiny compared to the flag! 

In all, it was a great trip and I learned quite a bit about what is going on in other communities regarding hunger, justice and global mission. AND, not bad, that's when I was initially asked to do the UN thing. So that's super happy! I also wrote a paper for a class without the use of wi-fi, which seemed like the most scary of tasks when I first arrived. Somehow I managed to survive though! :)