Thursday, December 31, 2015

2015, A Recap

I did not visit the ER or Hospital at all during 2015. That is a HUGE victory and much different than 2013 when I was constantly juggling scary medical tests and multiple specialist appointments or 2014 when I learned that international airports are able to start IV's on site.

While the cortisol pump definitely helps disease management, my support network and I have also gotten smarter. When people point out that I'm starting to fade, I listen. I trust them. I take action. We recognize the crashes earlier. I do everything in my power to remain Clearly Alive. That is starting to translate into less ER visits. I'm excited!

And now for the month by month recap:


Just the husband and I goofing off with the wrong glasses.
We welcomed in the new year at our friends' house. We weren't really sure what 2015 would look like, but we were ready to tackle it together as husband and wife. We were Clearly Alive and back in America.


Hi Cat.
In February, we celebrated Christmas with my family because we are awesome like that. We don't always celebrate holidays on the actual holiday but rather when we are able to be together. I also did not run a 15k. I came down with a "flu like virus" coupled with a 101.3 degree Fahrenheit fever. With extremely diligent self care, a script of Tamiflu, and several days of a triple dose of steroids, my husband and I were able to stay ahead of the virus and remain hospital free.


We relayed a half marathon!
At the beginning of March, we took a one year anniversary cruise to Mexico. I almost crashed the first night of the cruise but extra hydrocortisone, Zofran, and lots of rest enabled me to wake up the next morning feeling somewhat alive. Later in the month, my husband and I relayed the Dallas Rock-n-Roll half marathon. I also had the honor of speaking at my Assyrian grandmother's funeral. She passed away on March 21st, 2015.


Not cool drunk and/or stoned neighbors. Not cool.
The month of April started out with a not fun April Fool's day prank. Our downstairs neighbors got super drunk and high on something. They decided that 3:30am would be a good time to run up and down the hall spraying the fire extinguisher. This set off the fire alarm in the entire building, forcing us to evacuate. Sleep deprivation does not play nicely with Adrenal Insufficiency. Later that month, my husband and I drove down to Houston to attend a friend's wedding. It was such a humbling experience to have the bride take a break from the reception in order to hunt down migraine medicine for me as I was starting to fade from all the social excitement.


At my Decade of Diagnosis party.
The month of May started out with another wedding in which my husband had the honor of being the best man. Close friends are extremely important regardless of health. I am incredibly thankful for the men that help keep him grounded as we navigate life with my chronic disease. Speaking of chronic disease, I was officially diagnosed with Adrenal Insufficiency and started on Cortef in May of 2005. I celebrated the decade milestone with a party with family, friends, and close coworkers. I was not celebrating the disease. I was celebrating the diagnosis, my second chance at life. I also had the opportunity to complete a dream of mine by participating in a corporate track meet as a sprinter.


A mural for a friend.
In June, a group of us ran the "Must-Dash" 5k in honor of Father's Day. My 5k times are still nowhere close to where they were a few years ago, but that is ok. I'm able to cross that finish line and not require medical intervention afterwards. Perhaps one day, I can beat my PR that I set back in 2013 before my nightmare crisis. Another noteworthy achievement during the month of June was the completion of a wall mural for a good friend. It took a little over a month to sketch and paint it, and I spent a good amount of time resting on the couch in between sections. But I am quite pleased with the end result. Wall murals are still my favorite thing to paint.


Just some fellow cortisol pumpers and I in Chicago.
In July, I had the opportunity to meet up with my mom and many others for the joint AIU / MAGIC conference outside of Chicago. It was encouraging to fellowship with other women who understand living with this disease. I had the pleasure of hearing Professor Hindmarsh speak and meeting someone in the process of training her own cortisol detection service dog. Things are changing within our rare disease community as we learn more about the intricacies of our disease. I believe our future is only going to get brighter as we continue to become more educated.


Photo by Stephanie Brazzle Photography.
In August, my husband and I made a trip up to Maine in order to spend time with my husband's grandfather. I also had a trip to Austin for a work conference where I had to put a coworker on "ER watch duty" one of the nights as I was nervous I was going to require IV fluids. But once again, zofran, extra steroids and lots of fluids prevented a trip to the hospital. For that, I was very thankful especially because August marked my one year anniversary of remaining hospital free, and our one year anniversary of returning to America. We also ran in the "Bad Ass Brazos 10k" race down in Waco. Towards the end of the month, my husband and I had the honor of participating in my younger brothers wedding. August was a very good month.


Half marathon complete! Much slower than my 2013 time, but you know what?
I don't care.
We finished, and that's what matters.
In September, my husband accepted a job offer that would relocate us from Texas to Nevada. We started to prepare for the move and cross items off of our "Texas Bucket List." One of those items included completing a half marathon with a fellow Adrenal Insufficient gal. This half marathon was my husband's very first, and my first since my 2013 crisis. I loved being able to cross that finish line with both my friend and my husband by my side. I am looking forward to completing several more in the future.


We totally ran a 5k through downtown Dallas in the pouring rain!
Also, we're missing like half our group in this picture.
October was an interesting month. About twelve hours before my husband was set to depart for his new job, he received a phone call from HR stating that due to circumstances outside of their control they were required to rescind the job offer and swap it with a severance package. After many discussions, we decided that we were still going to relocate to Nevada in order to move closer to family. The severance package allowed him to move and begin searching for another opportunity while I remained in Texas. Towards the end of the month, a group of coworkers and I completed a very wet 5k in downtown Dallas.


My husband showing off his area of the country.
In November, I was able to join my husband for Thanksgiving. We spent a few days exploring Lake Tahoe before meeting up with relatives. I had the opportunity to teach my husband how to snow ski! November also marked the third anniversary of my blog and the milestone of over 100,000 blog hits. I remember when I reached the milestone of 10,000 hits and thinking "I have so much more to tell y'all!" I still feel that way. I have many adventures to share, and in due time they shall be published to this blog.

However, the most exciting thing in November was the launch of the Theoretical Steroid Curve Plotter. This tool took over two years to develop and it gives those on oral steroids a visual way to see their theoretical steroid curve. May it enable patients to start conversations with their doctors so that they can discover ways to improve their quality of life. I'd like us all to remain Clearly Alive.


Cat did not appreciate the Santa hat.
We did appreciate the Santa hat.
In December, my husband returned to Texas to help pack up our lives in preparation for our out of state move. While he has not yet found employment, we are confident something will fall into place after the new year begins. Shortly after he returned, we relayed the Dallas Marathon as part of a five person team. I love running that race. This marked the second year in which I sprinted across that finish line. For me, the five person relay represents how we are able to accomplish so much more with a good network of support. At this point in my life, I cannot run 26.2 miles. However, I can run 5.7 miles. With the help of others, I was able to cross that marathon finish line.

With the help of others, I am able to remain Clearly Alive.

2016, bring it.

I am ready.

Saturday, December 5, 2015


My university required at least one kinesiology credit in order to graduate. I wanted the class to be archery while I studied abroad in Korea, but it was canceled my semester. Much to my disappointment, I would have to fulfill my kinesiology credit in America.

I had only two options that would fit with my class schedule: scuba or karate. I am not a fan of swimming unless it involves snorkeling in the open waters of the Caribbean. Scuba diving in east Texas lakes was most definitely not that. Additionally, scuba was a three hour long night class and night classes were especially difficult with my adrenal insufficiency.

Thus, I signed up for karate.

And I was dreading it.

I have always struggled with group fitness classes. I remember having extreme anxiety during them as early as kindergarten. I just always felt different. I remember feeling dizzy. I remember struggling to understand the spoken instruction. I remember not knowing what to do. I didn't realize that my dizziness was abnormal at the time. I just assumed that was how I was supposed to feel because I had never felt any different.

Actually, these were the worst days in gym for me.
Picture found on Pinterest.

My dread that semester for karate further increased when I realized it was only offered on Tuesdays and Thursdays from 12:00pm - 1:00pm. 

Karate was smack dab in the middle of lunch. 

Should I eat lunch before karate and feel sick? Should I wait to eat lunch until after karate and feel sick? Throughout the semester, I tried both options. I felt sick both ways.

The instructor would begin each class with a group warm-up. I don't remember all of the routine, but I do remember one exercise in particular. Burpees with a push-up terrified me beyond all belief. If I went from sitting to standing on a normal day, I would black out. Karate class expected me to jump down, complete a push-up, and then jump back up on the instructors count!

With every burpee I attempted, I was afraid I would collapse the floor. Each jump, I was nervous that I would lose consciousness similar to band camp. In college, I was still ashamed of my disease and disclosed it to very few people. I felt that my disease made me weak. I tried to hide it and appear "normal." Twice a week, I was beyond terrified that I would be discovered as "not normal" but diseased.

I honestly cannot tell you what I learned. My entire focus was to just survive, to try to blend in, to not appear different. Even as I think of karate class now, over five years later, I have to calm my breathing down and remind myself that I am ok. I received my yellow belt. I earned my kinesiology credit. I have my engineering diploma.

I survived.

If I had to take Karate over again, I would approach it differently. I would speak to the instructor individually and disclose my adrenal insufficiency. I would request special accommodations. I would ask for an alternate warm-up that didn't included POTS triggering exercises. I would request that he not disclose my health struggles to others because that is information that I disclose at my own discretion. I would have up-dosed my medicine before class. Perhaps, with special accommodations I could have actually enjoyed the class instead of merely surviving it.

I want to do more than just survive life. 
I want to be Clearly Alive.