Wednesday, October 30, 2013

Oaxaca, Mexico!!!

This post is WELL overdue, but life did not slow down just because I was out of the country for a week...if anything it sped up! I expected to come back to craziness since I was leaving right at midterms, but the first week back I was still super busy and swamped. Things have slowed down a bit, so I wanted to take a few minutes to recap why it's been so long since I've posted!

As the title of this post says, I was in Oaxaca, Mexico a little over 2 weeks ago with my church. It was a mission trip to take solar powered mp3 players and load them with the New Testament recorded in the indigenous language of 3 villages in the state of Oaxaca. Many of the villagers, especially the older generation, do not speak Spanish and cannot read. While there is a translation in the Mizteco language, the high illiteracy rate means it's more or less useless. The missionaries that we went down to support work on doing the recordings in the indigenous languages and distributing the mp3 players. We got to visit 3 different villages and hand out almost 100 players!

Sunday night we led a church service in a village that we also visited later in the week. It was a unique experience because everything would go from English to Spanish to Mizteco and back again. It was also so incredible to be worshiping alongside the villagers, different languages and cultures, but knowing that we all serve and love the same God.

Monday, Tuesday, Wednesday, and Thursday morning we were in the villages helping to distribute the mp3 players. Monday the guys also helped with a construction project at the church and cementing the dirt floor. I got to help the women prepare lunch, and learned how to make corn tortillas by hand! The women kept saying how much it meant to them that we traveled all the way from the USA to just spend time with them and give them the mp3. It was really special to be able to just live alongside the villagers and experience their lives.

Tuesday was one of my favorite days because I had a cool opportunity to step out of my comfort zone and let God use me. In the morning we split into 2 groups with each of the missionaries and went to the various homes to explain the mp3s and show the families how to use them. At the 4th or 5th house, I had the chance to use my Spanish and actually talk with the family because they understood Spanish and we didn't have to go to Mizteco. I was pretty nervous, but a few houses later, the missionary asked if I wanted to translate for one of the other team members! That was really cool, and definitely helped me feel a bit more confident in my speaking ability. God truly gave me the words to say each time. In the afternoon, the missionaries decided we were going to split into 3 groups so we could reach more homes and asked if I would be comfortable translating for the 3rd group! That was an awesome experience because God definitely answered a specific prayer I had prayed about being willing and confident to use my Spanish when the opportunity came. He gave me the words to speak, and I am very thankful to have had that opportunity!

Wednesday and Thursday morning we were back in the village where we had the church service. Both days were spent going around the towns and handing out the mp3 players to the families and explaining how to use them.

Thursday afternoon we drove back to Puerto Escondido (where we stayed the 1st night) for the last 2 nights of the trip. *Fun fact about Puerto Escondido - it's ranked #3 in the world for surfing waves!* Some of us decided to try surfing (although not on the world ranked waves...) on Friday which was a free day. I was able to stand up a few times, and we all had fun! We returned to the USA on Saturday.

Overall health-wise, the trip was really good. I had been very nervous about all sorts of medical related issues going down - would I be able to eat anything, was I going to have BP problems, would I have bad reactions to anything - more than anything I did NOT want to be a liability to the team. I did have one night where I got pretty sick from a meal and felt off for a few days after. We discovered later in the week, when someone else had the same dish, that there were onions that had probably caused my reaction. Other than that, I had no health issues while I was in Mexico, even after being served and trying armadillo!

UNFORTUNATELY, I did have a bad reaction on the plane ride from Mexico back to the USA. At the time we had no idea what caused my reaction. I started feeling bad in the airport which just got worse when we got onto the plane. About 10 minutes into the flight I knew something was really wrong...I was having trouble breathing, my HR was 2x my resting HR, I broke out in hives on my torso and arms, I was shaking really hard, I was conscious but not completely was NOT good. I took benadryl and was on oxygen for a while, which definitely helped. For a bit the flight attendant was saying we were going to have to turn the plane around, then we were going to divert to Mexico City, but I kept saying I just wanted to get back to the USA. I did NOT want to end up in a hospital in Mexico. With the benadryl and oxygen, I improved enough to where we were able to fly straight to our destination. The next morning when I pulled out my pillow and sweatshirt from the flight, there was a scent on it that I remembered smelling in the airport and on the plane. I started breaking out in hives again and feeling like I had on the plane, so I'm pretty sure I reacted to someone's perfume...having the oxygen mask on must have helped me breathe cleaner air so the reaction stopped.

I'm still kind of in limbo with doctors and trying to figure these reactions out...but it's getting to the point where I know I can't ignore these symptoms. That reaction on the plane was scary and the closest thing I've ever had to an anaphylactic reaction. I am not looking to repeat that EVER! In August I saw an allergist who made a preliminary diagnosis of Mast Cell Activation Syndrome based on excluding other possible conditions. I was managing things pretty well, but obviously not completely... Unfortunately, we're in an insurance battle over that doctor so I can't go back and see least not yet.

Anyway, this post was supposed to be a quick update about the trip - apparently it turned into a LONG post of more medical issues...oh well, what's the title of this blog again - Maintenance Required...yep, story of my life =)

Thursday, October 3, 2013

Dysautonomia Awareness Month!!

On campus right now everything is PINK. Welcome to Breast Cancer Awareness month. I'm not against supporting breast cancer research, but some of what people are wearing is slightly you really need bright pink glasses frames that you're wearing indoors??

But people NOTICE, and that's what awareness is all about. Even things as simple as the sports teams wearing pink cleats or jerseys during October...everyone knows what it's for and why the teams are doing that. Twenty years ago, breast cancer was just another cancer that people died from. Now, so much awareness has been raised, so many donations have gone toward research, it's a cancer that is *almost* curable. Talk about incredible progress in medical research just by raising awareness!

I'm not a fan of asking people for money. I'm heading out on a mission trip in a few days, and didn't even want to ask people for support for that. But something that my mom and a few friends pointed out was that not everyone is able to go on a mission trip. God has given me that opportunity, and other people are able to partner with me by helping to send me through financial and prayer support. It is a way for others to join in and be a part of the work God is going to do while I'm in Mexico.

I think my approach to Dyautonomia Awareness can and should be the same. I was to start by just getting the word out there. The incredible progress that has been made in breast cancer research didn't happen overnight. It started with just a few people getting the word out there. My friends and family who have walked this path with me over the past 6+ years cannot always DO anything for me. I cannot always do anything for myself. But we can get the word out there about dysautonomia. So many people have not even heard about dysautonomia, often doctors included. All research is based on funding availability. To get the funding for autonomic research, people have to KNOW about it.

This gets back to my idea of running races to raise awareness for dysautonomia. I want to be a part of getting the word out there, and hopefully finding better treatment to manage symptoms and hopefully find a cure! I'm hoping to do my dissertation on autonomic function in some way and would like that be the start of my own research in this field. Assuming I can get back to actually running races without collapsing or needing IVs, I do want to find a way to use something I enjoy to raise awareness about something that is a huge part of my life.

Tuesday, October 1, 2013

Race Report: Akron Half Marathon

Bear with me on this's going to be kinda long! I actually have A LOT to write about, but I think I'm going to split it into a couple posts for the sake of not having 1 post that goes on for as many miles as I ran this weekend.

So this past Saturday was the Akron Half Marathon. Last year I ran the full marathon with my mom and had a BLAST! It was probably one of my top 5 races I've ever run. Even though I was only doing the half this year, I was still hoping that it was going to be just as good.

My mom came out on Friday, and we were able to hang out and have a good afternoon/evening at the expo and relaxing. Saturday morning was perfect weather for a race! Last year we had found a building right near the start line that was open for runners. We found that same building this year and were able to just hangout indoors before the race started so we didn't freeze.

About 10 minutes before the start we left the warmth of the building and joined the masses at the start. The race had decided to have corrals, which was a change from last year. Based on when we thought we would finish, we were in Corral A. Akron does a fantastic time at the start with lots of great pump-up music and fun commentary. They did get rid of the fireworks at the start (probably due to not wanting explosions), but it was still a great start!

I had not run more than 8 miles in months without having major issues. The one 11 mile run I had tried a few weeks ago ended with me passing out at I was a bit unsure as to how I was going to do in the later miles of the race. On top of that, my mom was having major cough fits because of a really bad allergy flare. We made a great pair!

Overall, I felt pretty good until about mile 11...then I started dry heaving. It came out of no where, and I'm still not sure what happened. I think I just hit my limit and my body said "NO MORE." Since we were only a couple miles from the finish I kept going and we finished! Always a good thing =)

I really did not want to go to the medical tent, and tried to just lie down for a bit and see how I felt. I had had a very negative experience with a doctor earlier in the week and was tired of trying to explain to doctors who were not willing to listen what was going on with my body. But after about 30 minutes of dry heaving on the ground, we went over to see if I could get an IV.

The doctor who I saw was fantastic! If every finish line was like that, I would sign up for races just to get IVs! Not really...although it is an idea...haha =P He started an IV pretty quickly since I was dry heaving a lot and said he didn't want to even try oral hydration at that point (I wish every doctor would think like that!). The bags ran REALLY fast, so I was still dry heaving after 2 bags. About halfway through the 3rd bag I finally started feeling a bit better. That definitely helped, although I didn't start feeling better until today (about 4 days later)...

Because I got 3L of fluids, I actually felt a lot worse the rest of Saturday and Sunday. I calculated it out, and that was 6lbs of saline! For someone my size, 6lbs is a large percentage of my I felt super swollen and uncomfortable for a while. I hadn't thought I was dehydrated going in to the race, but I didn't pee for 14 hours after receiving the I guess I was! It was an eye-opener that I still have a lot to learn about what's going on in my body, although I do think I'm getting better...just don't take this race as an indication of that =P

Like I said, I felt pretty rough the rest of Saturday and all day Sunday. I had a lot of pressure in my chest and was having trouble breathing. It felt like all the fluids I had gotten had gone into my chest and were just sitting there...NOT FUN! By Monday the chest pressure had gone down a bit, and today I'm finally feeling more like myself...but with the added benefit of having received IV fluids! Wahoo!

So, lesson learned - as much as IV fluids help me feel good, 3L is WAY too much. It was a fun race up until where I started dry heaving, so we'll see if I run it again next year. I'm signed up to run the first Pro Football Hall of Fame Half Marathon in April. I've been feeling burnt out from racing, so I'm not ready to put any more races on the calendar. Plus I want to figure things out a bit better before I keep pushing myself. It seems there's always something going on, and I have to find the balance between doing things I love and staying healthy...hopefully they meet somewhere!!