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:


January

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.


February

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.


March

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.


April

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.


May 

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.


June

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.


July

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.


August

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.


September

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.


October

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.


November

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.


December

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

Karate

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.

Saturday, November 21, 2015

Theoretical Steroid Curve Plotter

Gone are the days where doctors are suggesting just twice daily dosing of hydrocortisone to achieve that "normal" life with Adrenal Insufficiency. We're smarter now. We've learned that cortisol levels vary throughout the day, following the circadian rhythm. We've learned the benefit of splitting up our dosage and combining different types of steroids to give us more even coverage over 24 hours.

But there wasn't an easy way to visualize this theoretical steroid curve.

Until now.

(Are you using the cortisol pumpThis version of the tool is much easier.)



How to Use This Tool

This tool was designed in Google Chrome, and therefore runs best in Google Chrome. Additionally, if you are having problems on your mobile device, please switch to a computer. If you notice a problem, send me a message on my facebook page. We'll work to fix it.

For Google Chrome, please input the time in the format of HH:MM AM/PM. For all other browsers, please use military time. Confused about military time? For anything in the PM, add 12 to the number. 8:00 PM + 12 becomes 20:00. For anything in the AM, the time remains the same. You do not need to label AM or PM.

Limitations of This Tool

This tool plots the theoretical cortisol curve based off of mathematical formulas for each steroid. It is assumed that the value in the blood stream increases in a linear fashion until the medicine "kicks in." It will then exponentially decay according to the biological half life. All values are given in terms of equivalent hydrocortisone. The following properties were used:

Steroid Type
"Kick In"
Biological Half Life
HC Equivalent
Hydrocortisone
30 minutes
1.5 hours
1 mg
Prednisone
2 hour
4 hours
4 mg
Dexamethasone
4 hours
36 hours
26.67 mg

Please note that these are theoretical values. Each individual absorbs and clears medicine at different rates and absorption is effected by many different factors. Additionally, your body does not absorb all of the medicine that you take. Dusty over at Addison's Support Advocacy has an excellent blog post explaining more about this. This tool does not currently take into account the systematic availability of hydrocortisone.

You will also note that there is no scale on the y-axis. This tool is designed to only provide a rough idea of a curve and not actual numerical data.

Also realize that blood work does not provide an accurate representation for oral steroid replacements. Please consult with your doctor and base your individual steroid treatment off of your symptoms and what works best for you. We are all incredibly different. This is definitely not a one-size-fits-all disease.

The purpose of this tool is to start conversations that can perhaps improve your quality of life. We don't have to live miserably with Adrenal Insufficiency. We can be Clearly Alive.

Shout Outs and Thank You's

This project has been over two years in the making and I definitely did not complete this by myself. I have some awesome engineering friends who were willing to use their technical knowledge so that my dream could be turned into a reality. Thank you M. Galland, J. Pawula, W. Toth, and A. Vera.

Medical Disclaimer

All content found on this website, including: text, images, audio, or other formats were created for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. 

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website. If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately.

By using the Tool, you acknowledge and agree to and accept these Terms of Service, including all policies and terms linked to or otherwise referenced herein.

Reliance on any information provided by this website and this tool is solely at your own risk.

Saturday, November 14, 2015

The Dinner Party

I was in eighth grade and not yet diagnosed. My friend's mom knew of a fancy dinner party that could use a few middle schoolers to act as "waiters." We would be required to wear black pants, a white button up top, and walk around the mansion with platters of hors d'oeuvres serving the guests. It was touted as a fun experience where I could earn a bit of cash and interact with fancy people.

My friend and I agreed to do it.

I vividly remember my anxiety before the event. Was I wearing the correct outfit? I think these pants are black, but are they black enough? Would I show up at the right time? I know she said to arrive at this time, but did she really mean this exact time? What do I say after I ring the door bell? What if something goes wrong? Why did I sign up to do this? I just want to go home.

One of my many signs of un-diagnosed Adrenal Insufficiency included psychiatric symptoms such as anxiety and depression. When my cortisol is low, I have uncontrollable and crippling anxiety. To quote a case report published in March of 2015:
Psychiatric manifestations of Addison’s disease were first reported by Klipel in 1899 defined as “Addisonian encephalopathy” [5]. A few case series (n = 25) were published during the 1940s and 1950s revealing a high association (i.e., 64–85%) between psychiatric disorders and Addison’s disease [6–8]. However, nowadays this association receives little attention.
I wish more doctors were aware of this association.

As the night of the party wore on, I had an increasingly difficult time comprehending simple instructions spoken to me. I also began to grow even more dizzy. We were discouraged from taking breaks in front of the guests, so I would retreat into the kitchen. Eventually I was discovered and forced out with another plate of food and a reminder that I was being paid to work and not sit. I tried to put on a smile, but I felt at any moment I would collapse.

After the party ended, I was required to help clean. I remember being scolded for not using warm enough water to wash the dishes. I tried to explain that the hot water was causing my hands physical pain. The man in charge checked the water and told me it wasn't that hot. He believed I was just trying to get out of work, but that was not the case. Eventually I was to just dry the dishes, what he considered an even simpler task.

Except, my coordination was off. The group soon realized that they were much more efficient without my help. They finally allowed me to rest on the couch while they finished the job. I wish I could have explained to them the type of fatigue I was battling during that moment. No amount of mental effort or will power, no pep talks or even physical threats would allow my body to move.

I came home slightly richer but in a foul mood for a few days afterwards. I felt beyond miserable but I did not have the capability to fully express how awful it was. I thought living life was supposed to feel this way. I did not know any different.

Photo of the two of us from 8th grade.
My arms should have not been that skinny and my collarbone should not have been that visible.
I received my diagnosis of Adrenal Insufficiency about a year after this incident. Needless to say, I am doing much better now in terms of my health. I continue to learn and adjust. I continue to live. And I continue to fight to remain Clearly Alive.

References

  1. Julia de Lima Farah, Carolina Villar Lauand, Lucas Chequi, et al., “Severe Psychotic Disorder as the Main Manifestation of Adrenal Insufficiency,”  Case Reports in Psychiatry, vol. 2015, Article ID 512430, 4 pages, 2015. doi:10.1155/2015/512430

Saturday, November 7, 2015

My Brother's Wedding

I was very nervous about my brother's wedding on August 23rd, 2015. My adrenal insufficiency coupled with social anxiety means I don't always play nice when I grow overwhelmed. I wanted my brother's wedding to go well and not have my adrenal insufficiency flair up. I did not want to draw attention to myself. I wanted the focus of the event to be on the bride and the groom.

In the months leading up to the big day, I had to sit out on many activities. I could not attend my brother's engagement party. After extreme frustration, a panic attack, and many tears, my husband and I jointly decided that I would spend the evening quarantined to the couch with my cat while he ventured to the party alone. I was distraught. I tried to plan that day well. I tried to save up energy so that I could attend and show support for my brother and his fiancee. But in the end, I lost. I was a crying mess left alone on the couch. I sent my brother a very disappointed text message informing him I would be a no show. His response was absolutely perfect.

"We don't want you to waste energy feeling bad about it."
My brother knew I supported him, and that's what actually mattered. I had to continue to remind myself of that fact during the entire wedding weekend, as I would randomly decline participating in social activities due to health. I had to leave the rehearsal dinner early because my social anxiety grew to an uncontrollable level. I was extremely disappointed that I missed my dad's toast, for I know he gives amazing speeches.

Weddings are also opportunities to see many people that you haven't seen in a while. My brother's wedding was the first time for several guests to see me with my husband since our own wedding in March of 2014. They kept repeating to me and my family how I looked healthy. I looked happy. And it looked like my husband and I were doing extremely well.

We got to visit with the pastor that performed our ceremony.
In the chronically ill community, we grow very frustrated with the phrase "But you don't look sick!" I find the phrase "You look healthy!" completely different. These were close family and friends who saw me when I looked very sick. They remember looking at a pale, listless, bag of bones. They remember hearing stories of the multiple hospital stays and ER visits. Some of them were even at my side during the various hospital adventures. When they tell me I look healthy, they mean I look healthy. It's an exciting thing for them to see.

A picture of me with the beautiful bride.
Photo taken by Stephanie Brazzle Photography.
I am doing well. My marriage is doing well. My husband is doing well. And I look healthy. The weight that I have re-gained over the past year has made me look healthy.

I look healthy. I am healthy. I am Clearly Alive.
Photo taken by Stephanie Brazzle Photography.
Towards the end of the night, my brother approached me and told me that I handled the weekend perfectly. Suddenly, all of my insecurities about being chronically diseased did not matter. The only thing that mattered was that my brother was proud of me. And I am so incredibly proud of him.

I don't care how old or how tall he is, he'll forever be my lil' bro.
Photo taken by Stephane Brazzle Photography.
To the new Mr and Mrs:

May your friendship and love for each other continue to grow and deepen daily.
May you always be able to share a laugh together, even when times seem really, really scary.
And may you never ever forget that you have both my husband and I supporting y'all, constantly.

Love, your older sister.

Welcome to the family, new sister.
Photo taken by Stephanie Brazzle Photography.

Saturday, October 31, 2015

The Wisdom of a Manager, Part 2

In April, I listened to a panel discussion with a group of upper level managers at work. When the topic of work load came up, one of them made the comment that his philosophy was along the lines of "Keep loading me up with work until you find me collapsed and convulsing in my office!"

I don't like it when managers state things like that.

The same manager also mentioned that he has an open door policy. We should feel free to approach him at any time and ask him for further clarification if he ever says something that confuses us. I e-mailed him requesting a meeting. I wanted further clarification on his "work philosophy."

When it came time for the meeting, I got straight to the point.

"You mentioned that your work philosophy was to keep giving you work until they find you convulsing on the floor of your office..."

"Yeah, it's a joke. And I don't expect everyone to have that same drive."

"Ok. But have you ever started convulsing due to overwork?"

"Nope. Of course not."

"See, I struggle so much when upper level managers say things like that. Even in jest. Because it is a legitimate fear of mine."

I continued to open up about living with Adrenal Insufficiency. About how I'm scared of getting burnt out. About how hard it is for me to sometimes keep up with schedules, especially if I am having an off day. About how since starting my career I was in the ER or hospital November 2012, April 2013, May 2013, August 2014 and ALMOST November 2014. About how I almost died. About how my own manager knows, but I used to try to keep it hidden from everyone.

I initially rendered him speechless as he processed through everything I disclosed.

"I had no idea. Wow. That sounds like a bitch to manage."

"Yeah. It kinda is."

"Amber, NOTHING is more important than your own health. As a manager, we trust our employees to state their limits and we will work around those. One, we have to make accommodations for things like this because it's the federal law. Two, I'd like to think we'd make accommodations BECAUSE WE'RE HUMAN! I'd hate to think we'd loaded you up so much that we send you to the ER. This job isn't worth it. No job is worth that. Plus, we are part of a team. Speak up. We won't look down on you. Everyone has their limitations. You just have a bit more dire consequences if you cross yours."

I am continuing to work on developing my voice and setting proper limits so that I do not work myself to the point of collapse. Every now and then, I misjudge and still require assistance. I had to complete several hours of testing at temperature a few months ago and by the end of the day I could not form coherent sentences. I went into my manager's office stating "Data, pretty... Pretty pictures... Good data... Data done... Read e-mail... Explain more... Monday." He took one look at my face and offered to drive me home, to which I gladly accepted.

We're going through another less fun time at work complete with tight schedules, long hours, and a ridiculous work load. I'm not particularly enjoying it as my strongest confidant is currently in a different state looking for a new job. But I have purposefully set up a good network of support. Management knows my health situation. Close coworkers will keep an eye on me and alert me if they see me starting to fade or grow increasingly irrational. Friends and family regularly check in on me and ask the correct questions to make sure I am ok.

It's crunch time, y'all.

And this gal will continue to do everything in her power to remain Clearly Alive.

Saturday, October 24, 2015

The Corporate Track Meet

The Wednesday before the nightmare in 2013, I actually completed a corporate track practice and then tacked on another 3 mile social run at our local running store afterwards. During that run, I got so dizzy that I fell. I bloodied up both of my knees and had to hobble back to the store.

 My hand would have been more busted up, but my cell phone took the brunt of the fall.
Photo from April 2013.
My extreme dizziness should have been a warning that my Adrenal Insufficiency was incredibly unstable, but I didn't realize it until it was almost too late. In the months that followed, I went from being able to run a 5k in 26:09 while holding on a conversation to barely being able to walk from the bed to the bathroom without passing out.

I had to drop out of track with no other explanation than "health." I could not adequately express my disappointment as I believed running in track was yet another dream cruelly stolen from me.

But dreams should not always be viewed as stolen. Sometimes, dreams are just placed on paused.

In 2015, I was healthy enough to rejoin the cooperate track team. I even qualified to compete at the regional meet in May. I was running the opening leg of the pyramid relay which consisted of five different sections: 400M Female - 800M Male - 1200M Male - 800M Male - 400M Female.

At the start.
Photo from May 2015.
I am not used to starting races in an individual lane, on a track. But I did it, setting both a PR for my 400M and beating the time of the other woman on our team. My husband overheard someone on our team state that I looked like a sprinter. This long distance gal, who had never sprinted before in her life, looked like a sprinter. Mission accomplished.

Our pyramid relay team.
800M, 800M, 1200M, 400M (aka me), 400M.
Photo from May 2015.
Our pyramid team took third in our event and our corporate team took second over all.

The 2015 Track Team.
I was wearing compression socks to try to avoid aggravating my shin splints.
Photo from May 2015.
I did amazing for my event. Afterwards, things began to go down hill.

My husband and I left the charter bus to head north of the city in order to put our group on waiting list for a particular restaurant. What was supposed to be only a 45 minute drive turned into over an hour with us trapped in traffic. When we finally got to the restaurant, they informed us it would be over a four hour wait.

As I continued to fade due to inadequate steroid coverage and dehydration, my mind became irrationally fixated on the task I said I would complete: procure a table at that specific restaurant. I am a bit ashamed to admit I shouted loud profanities in the restaurant as I stormed out in tears feeling completely overwhelmed and helpless, unable to complete the task.

This was a wake up call. I took more HC as we drove to our friends' house. I knew that my body would not be able to handle a turn around trip from Houston so we planned to stay the night with some dear college friends.

The wife said she'd be happy to prepare a gluten free meal that we could just eat at their peaceful home. I started crying when I realized that was the new plan. I knew that I could not handle being out in public at the moment, but I needed to eat food. This could not have been more perfect.

We were planning on watching a movie after dinner, but I was starting to get the dreaded low cortisol migraine. The wife saw how unwell I felt and stated, "Please don't feel obligated to stay up. If you need to go to bed, go to bed." I was so appreciative her stating that. I took some more HC, a zofran, and was in bed by 8:45pm. I awoke the next morning feeling better, but still not 100%. I then realized how badly sunburned I was. By this time I should know beyond a shadow of a doubt that sunburns are extreme cortisol utilizers. And yet, I forgot sunscreen.

PSA- Be CAREFUL of the sun on cloudy days!
Photo from May 2015.
After we packed up our things, my husband and I returned to Dallas. I'm glad I was finally able to compete in a track meet. Though I did learn a few things:
  1. Sprinting is HARD. It also utilizes much more cortisol than I was expecting. We're talking like half marathon levels to run 400M fast.
  2. Sunburns require extra HC. And aloe. Lots and lots of aloe.
  3. I might feel fine immediately after exercise, but I must be extremely mindful of the following 4-6 hours. This is when I can get into the danger low cortisol zone.
I'll remember these lessons and apply them to my next running adventures. I shall also never forget that this long distance gal was able to sprint, and sprint well.


28 August 2017 Update

In all honestly, I needed to go to the Emergency Room after the Track Meet. I had sprinted, gotten badly sunburn, and my body was giving all the signs of an impeding crisis. I begged my abuser to take me because I knew I needed IV fluids. He refused, because it was inconvenient for him. He left me upstairs, in the guest bedroom, while I was still writhing in agony from a horrible migraine.

Cortisol is only half of the equation. An emergency injection does very little to combat dehydration. Sunburns are extremely dehydrating. Although I did survive this event, there were hours of unnecessary physical torture due to my abuser. I was unstable for several days after the event.

Do not fear emergency medical treatment.

And if you are in a position where someone refuses to take you, call an ambulance.

You deserve to remain Clearly Alive.

Saturday, October 17, 2015

Writing for the Mighty

Off of a recommendation of another blogger, I nervously submitted a piece of writing to the Mighty. I received the following response:
Hi Amber, 
Thank you for sharing your story with us. Unfortunately, we can't publish every story we receive on The Mighty, but we'd love to read more from you. We have a few writing challenges going on in our community. Would you consider writing about one of these topics for us?
I submitted another piece that I believed answered one of their writing prompts. I received another rejection, but this time, with a caveat:
Hi Amber, 
Thank you for sharing this with us. I read more of your blog after reading this story and came across this one -- that I really think would resonate with our community. Would you be interested in featuring this one on The Mighty instead?
And thus, my first Mighty post was published.

My picture and article on the front page of the Mighty.
I must admit, I panicked when I saw that post went live. On this blog, I have complete control over content and presentation of material. This was outside of my hands. Here was my voice, my struggles, my journey, on some unfamiliar website. It felt like my soul was exposed and incredibly vulnerable.

My first post went live and my biggest fear was that I would appear weak. My husband chuckled at the irony of the situation.

I submitted two more articles. I received two more rejections, and another caveat:
We don't have a lot of stories about Addison's disease or adrenal insufficiency. Would you be interested in writing an open letter to anyone who's just been diagnosed? What do you wish you could tell that person, based on your own experiences? What should that person know? What do you wish you'd known?
That led to this publication.

A few days ago, I received a hand written note welcoming me into the Mighty family.

"Thank you for sharing your stories with us and teaching our community about living with a Clearly Alive Mantra."
I want my written words to encourage others and inspire them. Life is not easy, and there is already enough negativity in the world. Additionally, living with a chronic disease that requires daily medicine is difficult. It is easy to slip into depression and hopelessness. I am done doing that. I choose life. I choose optimism. I choose to share my stories here. I want to prove that I am Clearly Alive, and I would like as many people to read my voice as possible.

I'm not sure how many more of my writings are going to be published on The Mighty. But I can tell you I am incredibly thankful for those that have been.

Just a photo of me, rocking my Mighty t-shirt.
Also, I have a cat.

Published Mighty Articles


Saturday, October 10, 2015

The Next Chapter - Part Two

For my husband's last week in Texas, we were determined to complete his Texas "bucket list." Last Saturday, he ran a Tough Mudder with a friend. Later that night, we celebrated at a Brazilian steakhouse his new position with our closest friends.

"Howdy folks!"
On Monday, we hosted a happy hour with my coworkers so that they could say farewell to him. On Tuesday, we attended the state fair and said goodbye to Big Tex. The plans for Wednesday included the Mötley Crüe final farewell tour, and then my husband was set to start his drive to Reno early Thursday morning.

But the plans suddenly changed.

At dinner on Wednesday night, my husband received a voicemail from his new HR manager informing him that he needed to return her call as soon as possible. He stepped outside of the restaurant, and as I watched him on the phone I could tell something was wrong. He walked back in only far enough to motion for me that I needed to join him outside. It was there that he broke the news.

The job that he had been hired for had been changed.

The German CEO had decided that the job should be in Germany, and not America.

His Reno position had been eliminated.

Instead of a new job, my husband would be receiving a severance package.

There was nothing we could do.

A wave of emotions flooded through me, and I tried to handle them as gracefully as I could. He mentioned that both his new manager and his new HR were on the phone with him, and they both sounded distraught. They wanted him for this position. It was a perfect fit. But the German CEO believed that the job belonged in Germany. They gave us about twelve hours of advanced warning before his move.

When my food arrived, I couldn't eat. I looked at my order and thought I was going to vomit. I knew I needed to leave the crowded restaurant and process the news. I grabbed my cell phone and informed my husband that I was going to call my mom. As soon as I was outside of the restaurant, I sprinted out of sight. I felt a panic attack coming on. I found a random tree and sat down, failing at controlling my breath. One of the ticket scalpers saw me and attempted to comfort me by offering me his unopened beer. I'm thankful my mom had more practical advice.

"Amber. Take more hydrocortisone. Now."

The National Adrenal Disease Foundation defines an Adrenal Crisis as "the result of an extreme physical or emotional stress that does not get the necessary steroid coverage to meet that stress." My mom was determined to not let this unexpected extreme emotional stress spiral me towards a full blown Adrenal Crisis.

Taking additional cortisol during that moment did not numb my pain. It did not reduce the shock of the news. What it did do was enable me to respond appropriately. The inappropriate response was my refusal to eat any food. It was the uncontrollable sobbing to the point where I could not breathe. It was that dangerous unsafe voice tempting me to hurt myself. That was my life before I was properly diagnosed with Adrenal Insufficiency.

With proper cortisol coverage, tears are still shed. The shock is still real. The hurt is still there. But the doom is lessened.

I am so incredibly grateful for our friends who upon hearing the news dropped everything to make sure we were ok on Thursday. That even included allowing my dinner that night to be chocolate ice cream and broccoli.
My husband and I will weather this storm together. The past few days, we have come up with a plan of action. The severance package will allow him to search for employment in that area of the country full time. He left this morning to begin his quest. We will figure this out, together.

One more photo together before he starts his journey to the other side of the country.
And as always, I will fight to remain Clearly Alive.

I mentioned self-harm in the post above. I want to inform my readers that I am safe. I have a good network of support that regularly check in on me. Before I was properly diagnosed with Adrenal Insufficiency, I struggled with a dangerous voice inside my head that would tempt me to hurt myself. A few times, I would listen to it. A few times, my mom would have to come in and forcibly stop me. 

With proper cortisol coverage, that voice is silenced.

If I am ever overwhelmed while running low on cortisol, that unsafe voice returns. I am learning to recognize it quicker and react. I seek out help. I speak openly about it. By speaking openly, I can have accountability. Through accountability, I can remain Clearly Alive.

If you are struggling, know that you are not alone and do not be afraid to seek help.
I want us all to remain Clearly Alive.

Saturday, September 26, 2015

The Next Chapter

My husband and I are moving to Reno, Nevada.

Photo from Wikipedia.
My husband has accepted a new engineering job out of state. He is extremely ecstatic about it. He had to give up quite a bit to marry me, which included putting his engineering career on hold -- until now.

This move, however, will require me to walk away from my current engineering job.

I am sad to walk away from a company that has been so incredibly kind to me. Working full time with a chronic disease is incredibly challenging, but this company has made it much easier through their understanding management, flexible working hours, and accommodating HR. I could not have asked for a better place to have begun my engineering career.

His start date in Nevada is in less than a month. He will relocate first and go to prepare a place for me as I attempt to wrap up our life in Texas. I will join him in December.

And no, I do not know what I will be doing in Reno yet. When I figure it out, I shall let y'all know.

But until then, I will remain Clearly Alive.

If you are in the Reno area, please message my Facebook Page. I'll be looking for a new network of doctors, and any advice from locals is appreciated.

Saturday, September 12, 2015

Our Last Weekend in Malaysia: Part Three

This is a continuation of a previous post. If you have not read part one, you can find it here. Part two can be found here.

My husband and I were not originally planning on spending our last weekend in Malaysia in a private hospital. We had rushed off in that first taxi with minimal documentation and identification. Once I was transferred to a private room off of the A&E floor, my husband made a taxi run back to our home to gather an overnight bag.

This was my husband's first time making an official hospital run with me. After many years of practice, my mom and I had a pretty good routine down. We know what to bring. We prepare in advance. If you have not done so yet, create a "grab and go" hospital bag that contains letters from your doctor detailing your diagnosis and emergency treatment, lists of all your current medication, ID cards, insurance cards, good snacks, and even maybe a card game or two. That way you don't find yourself arguing with a dishonest Malay cab driver around 3AM because you had to run home for critical items. My poor husband.

The next morning, I was shocked when my endocrinologist walked into my room to pay me a visit. She was notified of my crisis less than seven hours before, and yet here she was seeing me in person, early on a Sunday morning.

We retraced the events of the previous day and concluded that my Adrenal Crisis was triggered by questionable chicken at Central Market. I had gotten food poisoning that was made so much worse due to my adrenal insufficiency. She wanted to keep me in the hospital for a few days in order to ensure I was stable. After all, I was set to leave Malaysia at the end of that week. I thanked her again for caring for me over the past six months. I said goodbye to her, again, and she wished me luck as we would venture back to America later in the week.

Because it was food poisoning that triggered my crisis, I was put on the very restrictive "gastro sensitive" diet. No flavors. No spices. No oil. Oh, and no gluten. There was a bit of a disconnect with the snack cart, so every day they still brought me my afternoon snack of 100PLUS (the Malay version of Gatorade) and a piece of bread.

It was too difficult to explain to the staff why I could not eat bread.
It was easier to just let the bread stack up and laugh at the situation.
Photo from August 2014.
I remember receiving my first meal in the hospital that wasn't bread. They brought in a covered food tray. When my husband lifted the cover, I didn't see anything on the plate. The bowl of rice noodles was blocking it. He saw a minuscule piece of fish which made him make a very audible sigh of disappointment. I honestly thought they had brought me an empty plate, and that was why my husband was so disappointed. When I realized I was actually getting food, I was ecstatic. Perspective is a very important thing.

They didn't bring me an empty plate!
Photo from August 2014.
I was also incredibly grateful for our friends who visited us during our stay. They smuggled in fresh fruit so that my meals could be more than flavorless chicken and rice soup.

Read about our other adventures with this couple here, here, and here.
Photo from August 2014.
I went into the A&E late Saturday night/ early Sunday morning. I was released from the hospital on Tuesday. Wednesday, I remained home from work. Thursday, I returned to the office to pack up my belongings. And Friday, my husband and I started our trek back to America. We had no idea our last weekend in Malaysia would play out like it did.
But that was over a year ago now.

We've been back in America for over a year.

I've also been ER and Hospital free for over a year.

And every single day, I am going to fight to remain Clearly Alive. I'm going to fight to remain hospital free. And I am going to continue to learn how to manage my disease so that I can one day be able to celebrate being ten or more years hospital free.

Visiting with our friends, on this side of the world, one year later.
September 2015.

Saturday, August 29, 2015

Our Last Weekend in Malaysia: Part Two

This is a continuation of a previous post. If you have not read part one, you can find it here.

Zofran only lasts for four hours. At exactly the four hour mark, I vomited.

I vomited after battling a migraine and several other symptoms of an adrenal crisis for the past six hours. My situation was rapidly deteriorating and priority was escalating. By this point, my body was starting to seize up and I could not control my convulsing.

My husband knew that the next steps would be my emergency injection and a trip to the hospital. While I was vomiting, he called our hotel concierge and informed them that we needed a taxi waiting for us to immediately transport us to Gleneagles Hospital. He then returned to my side as I slowly maneuvered from the restroom and back onto the bed.

"Ok Amber. I am going to mix up your shot, inject you, and then we are going to go to the hospital."

"No... I don't want it." I meekly whimpered. I never want to admit that I need to receive that emergency injection. That injection symbolizes how sick I am, and I try to downplay it. If I had my way, I would just wait and see or try to just sleep it off. This is so incredibly dangerous and can potentially cost me my life.

My husband had the absolute perfect response to my irrational and very dangerous denial. "Ok Amber. How about we think about it?"

"Ok, let's think about it." His words allowed me to relax. I closed my eyes. I stopped fighting him. I was no longer worried about being stabbed with a rather large needle.

Suddenly, I felt pain radiating from my thigh. "OW! I thought we were going to think about it?!"

"I did think about it. And I think you need it."

A few days after this event and when I was stabilized, my husband informed me that he had started mixing up my solu-cortef vial the moment I vomited. There was no doubt in his mind that he had to inject me. He had only given me the illusion of choice in this situation so that I would relax enough in order to not further injure us both. It was absolutely brilliant.

Although the injection momentarily stopped the convulsing, I was still not out of the danger zone. I could not see the world around me and there was absolutely no way I could walk. My husband carried me to the elevator, as I lay limp in his arms. We made it down to the lobby where there was a taxi waiting for us. After one look at me, the driver immediately knew that he had to transport us to the hospital as fast as possible. My life depended on it.

When I arrived at the A&E, I vomited again. The staff attempted to triage me, but we showed them documentation provided by AIU. As soon as the nurse read the simple three steps on "3 Ways to Save Lives," she skipped all formal protocol and took me immediately back to "Resuscitation 1."

My BP and HR are normally much lower than this. When I slip towards a crisis, my BP normally spikes up as my body dumps adrenaline into my system to attempt to stabilize. If I do not receive treatment quickly, my BP will drop potentially causing irreversible damage to my body.
This entire experience is such a blur to me.

I still could not open my eyes at this point. The outside world was too overwhelming.
I remember them sticking the IV in my hand. I remember that IV hurting. I remember noticing that blood was starting to backfill up the IV line. The nurses took care of that rather quickly.

They had put the blood pressure cuff on the same side as the IV. Every time the machine tried to read my BP, it would force blood back into the IV line.
I remember hearing the voice of an incredibly kind A&E doctor informing me that he had already spoke with my endocrinologist to touch base with her.

"But... it's like 2 am? You were able to reach her on the phone?"

"Of course. She's you're doctor. When was the last time you saw her?"

"Three days ago on Wednesday... to thank her for treating me for the past six months... and to inform her that I was returning to America soon."

"Well she and I both agree that you need to remain in the hospital for a few days to be monitored."

And so it was decided. Our last weekend in Malaysia was to be spent in the hospital.

Continued here.

Sunday, August 16, 2015

Our Last Weekend In Malaysia: Part One

Exactly one year ago, I was hospitalized in Malaysia for an Adrenal Crisis triggered by food poisoning. Although I alluded to the adventure on my facebook page shortly after it happened, I never wrote about it on this blog. I believe I finally have the strength to document that adventure. Please note that this is an incredibly difficult experience for me to recall.

To give some background, my company sent several of us on a six month international work assignment scattered throughout several different countries. For our last weekend in Malaysia, one of my coworkers decided to visit us from his work assignment in the Philippines. This gave us an excuse to do all of the tourist things that we had previously neglected to complete.

Friday night, we went to the Kuala Lumpur night market. I found it hilarious as the hawkers attempted to sell me noticeably fake jewelry and purses because "Every girl needs this." Actually, I don't. Please leave me alone and please do not shout things directly at my face.

The co-worker, the husband, and I on Jalan Petaling.
On Saturday, we went to Central Market to finish up our Christmas shopping. We decided to eat lunch in their food court. I have mentioned previously how incredibly difficult it was to find gluten free food in Malaysia. It was a large guessing game in which I just hoped I did not get sick. I was excited to see Chicken Rice because for the most part that is a safe meal for me. I decided to eat at a different restaurant than both my husband and my co-worker. In hind-sight, this turned out to be a very bad move.

My husband and I shared a "Mango Ice Floss" for dessert.
After we finished up our lunch, we headed to a butterfly garden. It was incredibly hot outside and we were doing a great deal of walking. I began to develop a slight headache. This should have been a warning sign to me, but I chose to ignore it.

I'd rank my headache as a level 2-3 at this point.
We continued walking all around this out door park. We found another flower garden and eventually discovered the National Planetarium. I welcomed the air conditioned break, as my headache was approaching a migraine status. I tried to take more medicine and drink more water, but it didn't seem to have much of an effect.

Outside of the planetarium they had a miniaturized Stonehenge.
I am clutching my water and leaning against the wall for support because I did not feel well.
After we finished up at the planetarium, I requested that we headed back towards our home. We could take the monorail back to the Pavilions mall where I knew of a safe restaurant to eat at for dinner. That monorail ride was incredibly difficult for me as my migraine continued to worsen. I somehow made it to the restaurant.

My co-worker, husband, and I all ordered food. When my food came I was only able to swallow two bites. I was scared that I would instantly vomit it all back up. I asked the waiter to immediately box up my meal and told my husband that I had to return home. It was only a ten minute walk and I assured him that I could do it by myself. He should continue dinner with my co-worker. I might have down played how horrible I was feeling because I did not want to worry my visiting co-worker.

I somehow managed to walk home even though my migraine was getting progressively worse and I was having a difficult time seeing things. As soon as I was back in the safety of our hotel room, I took a zofran, increased my cortisol pump rates, and even swallowed some oral HC in an attempt to avoid a full out adrenal crisis.

My husband soon returned with my co-worker who had plans to meet up with another one of our co-workers to experience some Kuala Lumpur night life. I kindly requested my husband to remain with me because I knew I was in bad shape and I was scared. I was incredibly dizzy, horribly nauseated, and extremely sensitive to any form of sensory input, be it lights, sounds, or smells. I could not see straight and my migraine made it near impossible for me to move.

I am so unbelievably thankful that my husband remained by my side.

Continued here.