Saturday, July 25, 2015

Dallas Rock-n-Roll 2015

In March of 2013, I ran the Dallas Rock-n-Roll half marathon. I set a personal record of 2:08:33.

Nothing beats a mirror selfie from 2013!
Then, the Nightmare happened and I was forbidden from running until my health stabilized. It took me a while before I was even ready to attempt to run again. As time continues to pass, I continue to regain my strength. In December, I relayed a marathon with four others. I ran the last leg (six miles) and had such joy sprinting across the finish line. This Clearly Alive runner was back!

Dallas Marathon in December of 2014.
Although I was back, I was in absolutely no shape to run the entire Dallas Rock-n-Roll Half Marathon on March 22nd, 2015. However, they did have a two person relay option. Leg one would be 6.9 miles and leg two would be 6.2 miles. My running buddy and I signed up as Team Clearly Alive.

During the race expo, I learned about an amazing organization called Race Guards. I walked up to their booth to quiz them. I showed them my medical alert bracelet and asked them, "If you saw this during a race, would you know what to do?"

Purchased from RoadID.
"Absolutely. Will you have your shot with you?" As it turns out, the woman who responded was a veterinarian. She even joked about how veterinarians are often more familiar with Addison's Disease than actual doctors. She emphasized the importance of filling out the back of the race bib with medical information and she wanted to make sure I was clearly labeled in case I needed my emergency injection. She then promised that the team of Race Guards would be running the entire course and providing medical aid when needed.

Steroid Dependent? Yes.
Clearly Alive? Always.
Also do fill out the back of the race bib with correct information.
I was greatly encouraged after speaking with her. Paramedics often do not recognize the severity of my disease and most volunteers in the medical tent at these races are ill equipped to handle me medically. This was the very first time I would be running a race where I actually had confidence in the medical responders.

The early morning before the race photo.
The day of the race arrived. I was running the second leg, so I was bused to my starting point. I had to wait a bit at the relay exchange for my husband to run his 6.9 miles. I thought I heard the announcer state that team "Clearly Alive" needed to make it to the exchange, but I had yet to see my husband. The volunteer at the exchange point asked me who I was looking for. I responded, "A very bearded man." When I saw him coming up over the hill, I pointed him out to her. She laughed and agreed that I had described him quite accurately.

The husband and random people before the start of his section.
He had quite the impressive beard going for a while.
My husband handed me the relay baton (which was a drum stick) and I was off on my section of the race. About three miles into my run, I passed the Race Guard that I had chatted with the day before. I thanked her for running the course. She instantly recognized me from the expo and loved my shirt. She chuckled and said, "Yup, you are clearly labeled like you said you would be. Good job."

Items avaliable for purchase here.
About half a mile away from the finish, I witnessed an event that almost triggered a panic attack due to my PTSD from previous medical experiences. A runner had collapsed and was foaming at the mouth. I am not sure if he made it or not. But what I can confidently state is that there were Race Guards immediately on site performing CPR as they waited for the ambulance.

I had to make a dedicated effort to separate myself from what I had just viewed. Yes, what I saw was a horrible sight. But it was not me. I needed to focus on my race, my own journey. I just had to turn one more corner and sprint through the finish.

We make such an amazing team.
I sprinted fast across that finish line to find my husband, my original running buddy, waiting for me with his matching medal. Our next goal: A half marathon in September.

I sell these items on my Zazzle storefront.
Proceeds are donated to NADF and AIU.
27 July 2015 Update: I contacted Race Guards to thank them and to share this blog post with them. They let me know that the man I saw half a mile away from the finish line had collapsed due to a seizure. He was going into cardiac arrest. The same woman at the expo who encouraged me to fill out the back of my race bib with medical information was able to perform CPR on him until the ambulance arrived. He was able to make a full recover and is doing well. 

I am so highly impressed with Race Guards. I hope to continue to see them in future races.

Saturday, July 18, 2015

The Work Pants

For most of my life, I was the skinny girl. I thought it was normal to be able to see my ribs. I thought a sunken in collar bone meant I was attractive. I assumed my thighs were supposed to be as thick as my ankles and my biceps were supposed to be as thick as my wrists. This was my normal, but it was not a healthy normal. My perception of reality was skewed.

Photo from 2004, a year before diagnosis.
Note the muscle wasting in my arms. Note how visible my collar bone was.
Before I was diagnosed, I was clinically underweight with an unhealthy BMI of less than 18. After starting treatment, I gained weight practically overnight. That rocked my teenage world. I went from wearing size zeros to have to constantly buy larger clothes. I hated that bathroom scale. I hated seeing the number it showed. That number seemed huge to me, and I cried every time I saw it.

Photo from 2005, a few months after diagnosis.
I was 30 lbs heavier here and incredibly self-conscious.
I learned quickly that I had to repeat to myself how I would rather be alive and healthy than a walking skeleton slowly dying. The scale does not tell the whole story. I was gaining muscle. This muscle was making me healthy. Although a BMI of less than 18 made for a pretty small number on the scale, it was not healthy.

Photo from 2007. I actually have muscle!
In 2008, I was switched to Qualitest. Suddenly, my medicine seemed to stop working. Endo #1 was beyond baffled so he just kept increasing my dose of HC. I gained an inappropriate appetite, and with that, I gained even more weight. I was clinically overweight.

Photo from 2008, and the start of the additional weight gain.
Steroids are a very interesting and powerful medicine. There is a strong misconception that steroids instantly cause weight gain. That is a gross simplification of a very complex issue. If you are on the proper dose of steroids that closely mimics the circadian rhythm, you should be able to maintain a healthy weight. The first weight I gained on Cortef made me healthy. The weight gain on Qualitest were due to an ineffective medicine given in the wrong amount at the wrong time.

Photo from 2010. No collar bone visible here!
My health began to slowly decline again in 2011. Weight started dropping off, but I didn't really notice it at first. Eventually, friends began to ask me about my change in weight. I decided to step back on that cruel scale and see what it told me. I was shocked when I realized that I was dropping weight! But I could not explain the weight loss, which made me nervous.

Summer 2011. Fall 2011. Spring 2012. Summer 2012.
I went from a size twelve to a size four. And I only tried on that size four as a dare.
I started working at my engineering job August 2012 with limited work clothes. I am not a fan of shopping. The loud noises, the crowds, the act of putting clothes on just to take clothes off, the stupidity of how female clothing is sized- these are all extreme cortisol utilizers for me. I normally end up feeling very drained and sick after every trip to the mall. But I needed clothes to wear to work. My aunt visited me for my birthday in October 2012. When she learned about my severe lack of work pants, she took me shopping and bought me six pairs.

That shopping experience was very overwhelming for me. My aunt asked me what size I wore. I said size twelve. The twelves fell off of me. We went down a size. The tens fell off. We went down another size. The eights fell off. We went down another size. The sixes fell off. But the size fours? The fours fit.

The size fours fit me. 

Never was there a time after my diagnosis where I could wear a size four. I was secretly pleased with this discovery. I was back to being the skinny girl. Naive me still thought I was healthy.

Photo from November 2012. My coworker and I realized we were matching one day.
I was so fatigued I could not stand up straight. Also, those size four pants were falling off of me.
I continued to lose weight and pretty soon those size fours were falling off of me as well. My close friends and family were growing concerned. I was, once again, hovering around an unhealthy BMI.

Photo from November 2012. All the female engineers on the two teams.
I remember standing like this to try to hide my weight loss.
I was also too fatigued to stand up straight.
My body finally screamed "ENOUGH" and I experienced the Nightmare of 2013. Slowly, we figured out why the nightmare happened. I made several lifestyle and treatment changes to help re-establish my health. I started to gain weight. It was incredibly difficult for me to look at that scale, but I had to keep repeating to myself, "I am healthy."

I then added a very dangerous additional sentence to my self talk.

"I am healthy, and guess what? Those size fours still fit! It is ok that I am gaining weight because my size four work pants still fit."

February 2015. I'm modeling how I broke my work ID badge, but I'm wearing those work pants!
You can also see my cortisol pump clipped to my pants in the picture.
I am now several pounds heavier than I was a year ago. I can no longer pretend that those size fours pants fit me. In reality, none of my work pants fit comfortably. I cannot tell you how many tears have been shed over this revelation, but I can say there have been quite a few.

Six pairs of pants that don't fit (and a cat).
This weight gain is GOOD. I am blacking out less. My blood pressure has stabilized. My fatigue has lessoned. These are all good signs!

I need to get rid of those size four work pants. I need to buy larger clothes. While this is an incredibly hard thing to admit, I should not view it as a negative. This is physical proof that I am in a much healthier state. My self-talk needs to reflect that.

It is better to wear a larger size and be ALIVE.

I want to remain Clearly Alive.

Saturday, July 4, 2015

Independence Day in Malaysia

Last year, we had to improvise a celebration for Independence Day while living abroad. There was another Texan family living in the same hotel as us, so we threw together very last minute a spontaneous "Texans in Malaysia Celebrate Independence Day Grill Out!" We started off by commandeering a back section of our hotel pool.

We used chairs to block the path. Kids are not allowed out.
Others are not allowed in. This spot is ours.
Next, we required burgers. Because we lived in the middle of Kuala Lumpur with no access to any sort of respectable grill, we had to employ our trusted George Foreman to handle "grilling" the homemade burger patties. We were fortunate enough to discover an amazing sandwich shop located in Avenue K that actually offered Gluten Free bread!

"Grilled" Burgers for the 4th of July!
But we needed more than just the burgers for it to be considered a successful Independence Day feast. We needed to include all the fixins! I was able to find all the ingredients required to make guacamole, though I did have to substitute Thai chiles for jalapeƱos. Warning, that adds a bit of an extra kick.

Corn. Made from scratch Guacamole. Chips. Gluten Free Cookies.
So delicious.
After all, a celebration is not complete without good friends and fellowship.

My husband found some cheap confetti poppers.
We pretended those were fireworks.

We wanted to make our only Independence Day in Malaysia special, and I believe we did.

Not quite fireworks, but close enough.
For my friends also living with Adrenal Insufficiency, please be mindful of how you are feeling today as you celebrate. Watch out for low cortisol symptoms and make sure you are extremely pro-active about remaining hydrated. If you start to feel overwhelmed, it is ok to rest for a while. I want us all to remain Clearly Alive and still be able to enjoy the holiday!

Happy 4th of July, y'all!