Friday, March 28, 2014

Korea: An E-mail Update

During the fall of 2009, I spent a semester abroad at a global university in South Korea. My university in Texas had an exchange program set up where engineering students could move to South Korea, attend classes in English, live in an international dorm and not fall too far behind in their course sequence! It was an amazing opportunity and I sure was not going to miss it! However, I got very sick when I first flew over to Korea. I knew less about Adrenal Insufficiency and had no concept of increasing my medicine during times of sickness or stress.

I was recently cleaning up my Gmail (Seriously, who does that?! Gmail itself told me that I shouldn't because after all I do have 15 GB of storage space) and I found an e-mail that I had sent to my mom on August 29th, 2009. I would like to share it with y'all.

Subject: So you don't freak out...

Remember how I had that fever? Well... Tuesday: 37.6... Wednesday: 37.1... Thursday: 37.3... no temp check on Friday, but I started developing a cough. I've been taking 10 mg of hydrocortisone at lunch also (up from the normal 5)

Because of the fear of swine flu, they took our temperature every single day.
Photo from 2009.
So that friday (i.e. yesterday) my team went downtown. I kinda felt nauseous on the bus ride down, but that could have just been because we crammed way more people into the bus than we were supposed to. We got to Pohang around 3:30pm... and walked... alot... we went to the fish market, and I started feeling sick again. Like, I had absolutely no appetite... and seeing fish swimming around in a tank and then picking one out to go inside and be fed that exact fish wasn't helping. We ate at the fish market, where Mi-Young and Jason (our other staff) picked out some fish and we sat on the floor and everything.

I was not feeling well during this entire adventure.
Photo from 2009.
And then it was like flashback to where I just couldn't handle new situations... the smells were just overwhelming... and a plate was set down in front of me with cooked shrimp that you had to pull the heads off and the spiral shells where you had to stab the then living slug with a toothpick and yank it out to eat it... I was not feeling my best at this point. There were just too many new things, and I just couldn't handle them. But I found the yams and started eating those... which was ironic because out of a table of nine, I was the only one who didn't think the yams were gross but thought every other thing on the table was disgusting. I almost started crying, but I didn't.

Do you see the toothpicks for the snails?
Photo from 2009.
And then the plate of raw fish came... My team knows I'm not a fan of spicy food (I ate that spicy chicken one night, and started crying because it was just so darn spicy... so now they try things before me and warn me if i can handle it or not). So everyone tried the fish [but me] and loved it. A LeTourneau guy was like, "Amber, you have to try this! It's good!!! It tastes like fish, but just a little bit chewier. You'll like it, I promise." And I just kept shaking my head no.

The plate of fish overwhelmed me so much.
Photo from 2009.
He ate another bite of fish and kept pestering me to try it. And I kept shaking my head no. And then he was like, "Amber! We'll make fun of you for the rest of the semester if you don't try just one bite." I couldn't hold back the tears any longer, and I just started crying.

"Fine. Make fun of me. I will not eat that fish." The Mongolian girl that was sitting next to him was trying to tell him to just drop it... because now I was crying hard... silently... but it was obvious that tears were coming down my face. I just could not handle the situation. He finally looked up and saw that. And then everyone at the table wanted to make sure I was ok... Mi-young, oh how I love that girl, just started handing me all the yams to eat, because I seriously was the only one at the table that did not find those gross, which was amazingly ironic.

I was not feeling well.
Photo from 2009.
I was able to regain composure, and they gave me more water... and yams... and then the soup came. Jason ordered a special soup for me (no spicy) so I had to try it (although I would have been perfectly happy just watching everyone eat). Oh... side note... family style eating... one bowl of spicy soup for five people... one bowl of not spicy soup for four people... I ate the broth, which was actually really good... and salty.... I couldn't eat anything in the soup... because, um yeah... fish heads just do not appeal to me in any way shape or form.

After we left the restaurant, I explained to the LeTourneau guy about addison's disease and how I am not feeling well right now because a) i am not talkative at all (which surprised everyone in the group) b) i have absolutely no appetite and c) normally, a situation like that should not have overwhelmed me as much as it did.

I was so sick. And as the night continued on, it became more and more obvious.
Photo from 2009.
I've had no appetite for several days now, I have a cough, my nose is bugging me, my throat is sore, I'm exhausted. So I thought to myself, "ok, if they check my temp today and I have a fever... I'm gunna tell someone..."

My temp today was 37.6... after I had it checked, I just started crying. I then packed up all my bags (because we were supposed to move into I-House today at 2pm... and it was 11 am), found that doctor's note, and then went and talked to Christina (our orientation coordinator)... I kinda started crying.... but was able to hold myself together. She took me to the hospital a little after 12pm. But when I say hospital, it's really like a walk in clinic.

Now for the good part: Mom, that place was amazing. It's privately run and I only had to wait maybe 45 minutes? The doctor translated that note from Endo 2 and then said that although I'm not at the dreaded 37.9 temperature, I have a weakened immunity so we can't officially rule out swine flu. I showed her my injectable and she promised me that they have the exact same thing in Korea. She also recommended me getting a shot because I do have a slight throat infection (that we caught super early) and that the medicine I take at lunch is not enough for my body to fight that off. So they gave me a shot (using their meds, because she wanted to make sure that I always have mine), and then immediately I started to feel better.

And I was like, "Christina, how much is this going to cost?" thinking insurance will only cover E.R visits and this will probably sink us at least $300. Mom, I was able to pay cash. The total bill, with the shot, was only 12,900 won.

The doctor also proscribed a mixture of antibiotics for me to take for my throat and cough... which kinda make me nervous because I'm not sure exactly what I'm taking... and I have to take them with food... three times a day for three days, but both Christina and the doctor (who scored major points with giving me the shot) said that they wont hurt me... so for now, I'll take them. Those meds only cost me 12,000 won.

Now for the icky part. I'm quarantined in a room by myself until Monday. 9am on monday Christina will take me to another hospital where they can check and see if I have swine flu (the one I went to today was too small to do it). So I go from "yay! I can finally unpack and move into my dorm room today!" to "Sad. Monday..." Which is really really discouraging as everyone else has already moved in and I'm stuck on the first floor of a korean dorm by myself...

I finally got back to campus around 2:30 and Christy called me and was like, "where are you?" So I told her... and she and Jennifer came down into my room and sat and talked to me for a little while, because they feel like if I'm highly contagious, they would have been sick long before now. It was kinda a reality check for them though when christina came in wearing a mask to give me vitamin c pills (which I'm supposed to take twice a day). They were like, "oh... dang..." Like I can go out in public... I just have to wear a mask. I would much rather prefer to hide in my room for two days...

But yeah, the two of them took two of my suitcases up to my room in I-house so that my roommates wouldn't over take my space and they explained to my roommates my situation. And then they left to go to downtown pohang, where they'll buy me some hangers. And they've promised to give me food, and keep me company, because they believe that everyone is over reacting. After I get back from the hospital on monday, and it comes out that I don't have the swine flu, handong will allow me to move into my actual room... and go to class...

But don't worry mom, many people are gunna be missing class first day. anyone who's been in korea for less than seven days (which is like the 11 Mongolian students and several professors) are not allowed to attend class until they've reached that one week mark due to fear of the swine flu.

Am I happy I said something early this time instead of waiting until it was unbearable? Yes. That shot does wonders. I'm actually hungry now for the first time in like several days. I mean before the shot, all I had eaten today was one apple and one snack bar and I had to force myself to eat both things because I just had no appetite.

And I do finally get some alone time... because honestly... I haven't had alone time sense I've left for Korea...


sent on 08.29.2009

The view from my dorm room, once I finally moved in.
Photo from 2009.

My Reflection on this E-mail Five Years Later

The fact that I lost my appetite, the fact that my social anxiety returned with a vengeance, and the fact that I was incredibly nauseated all point to too little cortisol. I had no idea at the time. Because my temperature was taken in Celsius, I didn't realize the full extent of my fever (100.2 deg F, and my body temperature normally runs cooler). With fever and Adrenal Insufficiency, I am supposed to immediately triple my daily steroid dose. I did not do that. I was putting myself dangerously close to an Adrenal Crisis. The doctor that I saw knew this which is why she immediately gave me an emergency shot of steroids while in her office.

I have learned so much over the past few years about living with Adrenal Insufficiency. And I am continuing to learn new things every single day.

Those scary times in Korea paved the way for these awesome times in Malaysia.

I am still very much Clearly Alive!

People keep asking why I refer to him still as my running buddy. Frankly, I like the name. But y'all win.
Photo of my abuser and I, taken last weekend at Batu Caves outside of Kuala Lumpur, Malaysia.

Friday, March 21, 2014

KL: Elevators

I must confess that this post has nothing to do with Adrenal Insufficiency. This is a post about living in Malaysia.

The elevators in Kuala Lumpur are weird. It took my running buddy and I about a day here to realize that we would have many fights with these elevators. We were on the ground floor of our new home (a thirty story building) and I needed to go up to the 2nd floor in order to check in. I left my running buddy in the lobby as I ran into the elevator just before the doors shut.

The elevator didn't like the fact that I wanted to go to the 2nd floor. It decided to take me to the 17th floor with another passenger. I rode the elevator up to the 17th floor and then rode the elevator all the way back down to the 2nd floor only to find a really confused running buddy waiting for me at the check-in desk. I had gotten into the elevator before him. Yet he had gotten to the 2nd floor before me. I explained to him how I was held hostage by the elevator. It was our first night in Malaysia and I already knew the elevators and I were going to be enemies.

We then check into our room and receive our floor assignment.

We live on the 13th floor.
Frankly, I find it awesome that we live on the 13th floor. Next time you visit a hotel in America, check and see if it has a 13th floor. It most likely will not. Malaysians don't have the same reservations as Americans about the 13th floor. But we did learn that they do avoid another number.

Can you see what floors they skip?
Apparently "four" is too close to "death" in Chinese. Just like Americans prefer to not live on the 13th floor, Malaysians prefer to not live on the death floor.

Evil elevator is making a stop at floor 13A.
We then ventured to one of the many malls in the area and got another crash course in the labeling of floors. Suria KLCC theoretically has three level "ones." There's the concourse floor. Then there's the ground floor, which actually isn't the ground floor because it is above the concourse floor. And then there's the first floor. Which technically, the first floor is the third floor because it has both the concourse and the ground floor below it. Floors two through four follow afterwards. Apparently, the fear of floors containing the number four only applies to living spaces.

We have already gotten lost several times here.
This has confused us so many times. "Get off on the first floor." Which first floor are you talking about? Are you talking about the ground floor, which is actually the second floor? Shall we get off of the concourse floor, which is actually the first floor? Or do you want us to go to the third floor, which is labeled as the first floor?

Signatures is on "Level Two."
Explain to me how this is "Level Two."
We quickly learned that we must factor in several extra minutes for the elevators in our place of residence in case they decide to hold us hostage again. And when all else fails, go for the stairs.

"Keluar" means exit.

Sunday, March 16, 2014

The Wedding Dress: Part 1

Destination weddings have a reputation for being happy, yet stressful and dramatic events. Since I was not the stereotypical bride, additional amounts of stress (even happy events) when not compensated for correctly can send me straight into the emergency room. Initially, my running buddy had joked that our first date would be a candlelit dinner in a hospital room (due to ill health at the start of our relationship) but neither he nor I truly wanted to experience that situation. This had to be a low stress destination wedding. 

There were several steps we took to reduce the stress of wedding planning and the wedding itself. The first step was my request of no parties or showers. Even though this confused and disappointed many, I declined all offers for engagement parties, bridal showers and bachelorette parties. While I appreciated those wanting to celebrate the occasion, I had to focus my limited energy on the major details of the wedding and prepare for our international move immediately afterwards.

One of the major details of the wedding I had to focus on was finding the right wedding dress. I purchased my dress at a David's Bridal location that is very loud, crowded and overwhelming, especially to an introvert. I loved my wedding dress. I hated that store. I very quickly grew weary of hearing "You're the bride?! Is this the dress??!!! Aren't you SO EXCITED?!" There were screaming children, obsessive M.O.B's, crazy relatives and frantic employees constantly repeating, "Is this the dress" to women trying on the most “interesting” (yes, mom censored me here) choices of gowns. 

I discovered that the quickest way to make me, a female engineer with Adrenal Insufficiency, shut down is to put me in a hectic and crowded store with way too much estrogen. I brought my mom, and my aunt, and was assigned to an overworked employee who kept forgetting about us. I had even tried to prepare ahead of time by taking an extra 5 mg of HC before I walked into the store, but that was clearly not enough. 

I fell in love with the 1st of only 5 dresses I tried on. I loved it because it was comfortable and beautiful. David's Bridal has a tradition that when the bride finds the dress, she rings a bell so that the entire store can cheer. No thank you. They were disappointed and felt the need to verify several times that I truly did not want to ring the bell when I found the dress. No. I did not want to ring the stupid bell. I wanted to leave the store. 

"Fine mom. I'll smile for the camera."
My mom and I coined a new phrase for my Adrenal Insufficiency after our David’s Bridal experience. I just have to say "I'm fading" because as my body uses up what limited cortisol I supplement, I begin to fade. 

At first, I become agitated, then overwhelmed and confused as my cheeks flush and turn red. If I don't get intervention, I then struggle speaking and I cannot understand the world around me. This is different than an Adrenal Crisis where I crash suddenly and must seek immediate emergency medical intervention. But it can be just as dangerous because with no additional intervention this “fading” can slip into a full blown Adrenal Crisis. 

"It takes too much energy to smile."
I began to fade more the longer I remained inside David's Bridal, but I did not have the words to communicate that to my mom. All of the loud external stimulation without ample cortisol coverage was too much for my broken adrenal glands. My mom took a few pictures at the very end so that we would have some photos of me in the dress even though it was the wrong color and size, but the correct style. 

I am a shell of a person here. Note my red cheeks and the rash on my chest.
Those who know me can see in my face that I was not feeling well. My chest was flush and my cheeks were red. I struggled to formulate sentences to tell my mom goodbye and could not articulate that I was fading and was barely able to drive home because I was so fatigued. Once I returned to my apartment, I immediately took additional HC and ate an entire can of black olives (including drinking the olive juice). Yet it still took almost three hours before I could move from my couch again. I was afraid I was going to pass out. 

"I'm done. I am so done."
This scared me. If the "simple" act of purchasing a wedding dress rendered me couch bound due to my Adrenal Insufficiency, how was I going to survive my actual wedding day? 

See my mom's response.

Sunday, March 9, 2014

Welcome to Kuala Lumpur!

My running buddy and I arrived in Kuala Lumpur on March 7th. Instead of traveling straight there, we broke up the international journey into more "manageable" chunks because sleep deprivation and Adrenal Insufficiency do not play nicely with each other.

After our wedding, we flew to LAX.

From LAX, we had a twelve hour flight to NRT (Tokyo). We rested a day to make sure my Adrenal Insufficiency would behave.

From NRT, we had an eight hour flight into KUL on Malaysian Airlines. We arrived safely and were taken by taxi to our new home.

Our first dinner in Kuala Lumpur. Eating gluten free is proving to be an interesting challenge.
I'm mostly just guessing and hoping for the best.
Luckily, we have a small kitchen so we will be cooking much of our own food.
We spent Saturday unpacking and finding the grocery store. Today, we walked around the city and explored. It is such a blessing to have my running buddy at my side. He definitely is helping me monitor my Adrenal Insufficiency. I'm learning to trust his wisdom and judgment. Often, I do not realize that I am starting to fade as I experience low cortisol. Having a partner willing to help manage my disease is amazing. I am thrilled he is with me during this Malaysian adventure.

A photo from Saturday as we were walking to the grocery store.
New environments and unknown situations are definitely stressful for me. Although I love experiencing new things, the thought is always in the back of my mind, "Will this make me sick?" Today we had an option of walking up a hill or waiting for a shuttle. Would the walk up the hill take too many spoons and leave me behind for the rest of the day? Should I risk it? Every thing I do is a calculated decision because I understand all too well how energy is a limited resource. I requested we wait for the shuttle instead of climbing the hill. Wait we did, which pleased my running buddy when he realized the shuttle was air conditioned.

An interesting building we passed while walking.
At the top of the hill, we ventured to a Malaysian honey store that was highly recommended by a friend. After we purchased wild ginseng honey (a throw back to my study abroad in Korea), we decided to grab lunch at an Indian Restaurant. From what I've noticed, Kuala Lumpur is weird about their water. The restaurant on Friday wanted to give us about 4 oz and call it good. I drink more water than that. Bring more refills. The restaurant today informed us that they only sell "mineral water" in small or large. I purchased a large 1.5L bottle. The waiter tried to tell us that would be enough to split for three people. Again, I drink more water. Bring us two bottles. I am easily dehydrated and with this humid heat I have to be extremely proactive about my water intake. I did finish that 1.5L bottle. In fact, I have had close to 5L of water and a salt tablet after lunch alone.

Photo taken after lunch. KL is an odd mix of massive city and jungle. We are loving it.
After lunch, we decided to venture to Central Market. We had a map and a general idea of where we were going. As we continued to walk, we ended up in a very different section of the city. Kuala Lumpur is indeed international and for the most part looks like just another big city. This section was different. It was crowded and overwhelming for me. I could feel my body start to shut down the longer I remained in what I considered a stressful and unsafe environment. I needed to get out fast.

I should have snapped a picture of the crazy crowded section but I was too overwhelmed.
I took this picture once we returned to the area of the city I was more comfortable in.
We finally reached our destination after passing through that section of town. I guarantee the next time I visit it, I will be less overwhelmed. It is the initial exposure that taxes me greatly. I was shaky and confused but I had not realized the full extent. Central Market was full of stalls and shops and I decided to wander around. My running buddy kindly requested for me to not make it a point to wander off considering neither of us have cell phones. My first response to his suggestion was one of anger. I thought to myself, "I'm an adult! I can take care of myself! Now I am going to make it a game to try and loose you! Let me make you suffer!" Hint: That is not an intelligent and mature response. That is the response of someone low on cortisol. As my back began to ache worse (another low cortisol symptom) and I realized just how unstable my knees had become, I decided to take an additional 5 mg of HC.

This is the view from our pool.
After the extra HC kicked in, I realized that my running buddy's suggestion was a wise one. I should not make it a game to get lost in an international city to prove a point to my new husband how adult I am. My initial response of anger was inappropriate and illogical. It was a result of low cortisol.

I love the architecture of these buildings.
In the end, we walked over six miles in 90 degree heat. This is such an amazing accomplishment for me as I think back to the time after my nightmare. In May of 2013, I was blacking out after climbing a single flight of stairs. I could barely walk from my couch to my kitchen. Today, I was exploring the new vibrant city that we now call home.

We found a nice mall where I was able to score some new work shoes for $37USD.
I look forward to showing the world how I am still Clearly Alive in Malaysia.

This is the sign by the elevators at our place. Durians have quite the reputation.
(Coming Soon: Wedding Planning with Adrenal Insufficiency!)