Wednesday, October 18, 2017

250,000 Blog Views

At the beginning of this week, my blog reached another important milestone. I've had over 250,000 blog hits. Happy Birthday to me! To celebrate, I would like to repost what I wrote when my blog reached 10,000 views in 2013. The sentiment remains the same:
When I started blogging, I did not know where my writing would lead me. I just knew I wanted to write. I wanted to share my story. I was done being silent. I was done hiding. I was done ignoring the elephant in the room. 
My name is Amber and I live with an incurable disease. 
Allow me to talk about it. Allow me to share with you my triumphs and my setbacks as I navigate my life with this beast. Allow me to raise awareness about chronic diseases so that others can improve their quality of life. 
Am I diseased?
Yes.
Do my diseases define me?
Oh heck no!
I am so much more than a list of diagnoses
I am, and will forever remain, Clearly Alive
I hope y'all continue to follow me on this journey. I owe you an update on my gluten free baking adventures. I never told you about the five mile race and subsequent ER visit on May 5th (PS- Five months ER free!!! Yay!). I have not even begun to write about Addison's and college or Addison's and living in South Korea. To summarize, I have much more to share. 
Here's to a life of continual adventure! 
Here's to a life that will always fight to be Clearly Alive!
I shall continue to share my stories with y'all, dear readers. I shall continue to pass on lessons learned and so that others may benefit. Will you join me in the quest to remain Clearly Alive?

Quote by Steve Jobs. Image by quotefancy.com

Saturday, October 14, 2017

An Open Letter to the TSA

I am a frequent traveler. I have navigated a multitude of airports, both within the US and abroad. I have published my tips and tricks both on YouTube and my blog. Most of the time, I have no problems navigating TSA. But occasionally I run across a Transportation Security Officer that takes their job so seriously it causes me physical harm.

Below is an adaptation of the formal report I filed to the TSA about an incident that happened on September 10th, 2017.

An Open Letter to the TSA

I have a medical condition and wear a medical pump. I always request to "opt out" of screening because I am uncomfortable sending my medical device through the TSA scanners.

On this particular day, I had a trainee with a seasoned TSO to complete my pat down screening. I am familiar with a newer officer practicing while the more experienced officer coaches. My suitcase was also pulled aside for a secondary check. The trainee began to give the required disclosure, but I stopped her. I requested to hold off on the pat down until my suitcase had been properly cleared. I wanted to observe the inspection. She had no problem waiting. Another male TSO cleared my suitcase and we resumed the pat down.

The sweet trainee delivered the required disclosure. I informed her that I was comfortable completing the screening in public, I have a medical device, and the infusion site is located in my stomach. I requested for her to not touch that area of my stomach. She was putting an inappropriate amount of pressure on the pat down when she was checking my back and I felt incredibly uncomfortable with her touching my infusion site.

I placed my hand on my stomach to protect my infusion site (something that previous TSOs have actually encouraged). The seasoned TSO stepped in to inform me that was forbidden. She stated that I do not get to choose where they can and cannot touch me. 

I informed her that I am allowed to disclose that I have a medical device, and a sensitive area due to that medical device, and they are not to touch that area because of that medical device.

She informed me that I was wrong.

I stated that it is TSA policy to not pat down areas where the TSO can see skin. I lifted my shirt to expose my stomach, showing her the infusion site. I informed her she is NOT to touch that area of my body for medical reasons.

She told me to put my shirt down and firmly repeated that I do not get to choose where they touch me. The seasoned TSO refused to consent to not touching my infusion site.

Due to the continuing confrontation with the seasoned TSO, I realized that my disease was starting to flare. I needed access to water to take additional medicine as soon as possible. I informed the seasoned TSO that my medical condition was about to get worse. I told her that I had an empty water bottle in my backpack. I requested that another TSO fill up that water bottle so that I could take more medicine for my medical condition.

She informed me that was forbidden because she had not cleared me from security because I was refusing the completion of the pat down. She asked if she should call over her supervisor. I informed her that I did require the supervisor's involvement. 

By this point, the disease began to noticeably flare and I began convulsing. Another TSO fetched me a chair. I was still adamantly requesting water and my medicine, due to my medical condition. My request was repeatedly denied by the seasoned TSO, but a supervisor was on his way.

As I continued to uncontrollably convulse, I proclaimed loudly, "Medical discrimination! They are refusing me water and my medicine!"  By this point, the supervisor had arrived. Another agent told me to just "calm down." I informed the additional TSA agents that I was not having an anxiety attack to where I could just "calm down." I was slipping towards an adrenal crisis due to the TSO's refusal to allow me access to my medicine.

The supervisor informed everyone that he was calling the paramedics. I stated I didn't need paramedics, I needed water and my medicine that was located in my suitcase right there and yet I was forbidden from accessing it.

The paramedics arrived. Their first action involved sending a TSA agent to fetch water. They forced another TSA agent to open up my suitcase and hand me my medicine. I chewed the pills due to TSA's refusal to allow me water. I could not wait on them any longer. 

Once the medicine kicked in, I was stabilized enough to complete the pat down.

By this time, the trainee had disappeared and the seasoned TSO was assigned to complete the pat down. But she was being observed by her supervisor's supervisor. 

The seasoned TSO delivered her required speech. When she had finished, I informed her (in front of her supervisor's supervisor) that I have a medical device and the infusion site is located in my stomach. I requested that she did not pat down that area due to the medical device and the sensitive area.

Amazingly, with authorities, multiple TSOs, and two paramedics observing her, she had no issue avoiding that area of my stomach.

I cleared by security and finished filling out the paperwork for the paramedics. They apologized with how the seasoned TSO handled my situation. I was inappropriately discriminated against due to my medical condition and I would like a complete formal review conducted of the incident.


TSA's Response

Good afternoon Ms. [Name Redacted]
We appreciate that you have taken the time to contact the Transportation Security Administration (TSA) about a screening experience at [Airport Redacted] on September 10, 2017. We apologize if you feel that TSA did not provide the service you expected.

TSA’s Disability Branch (DB) requested that TSA officials at the airport look into your concerns, and a representative may contact you about your screening experience to better understand the incident. 
In conjunction with the airport, DB would like to talk with you about your concerns. Please reply to this email with a phone number and time during which a DB staff member can contact you on week-days between 10 a.m. and 3 p.m. EST. I will be available to talk during this time. If you are unable or choose not to communicate by phone, please reply to this email with your preferred method of contact. 
Please provide the information within ten (10) days of the date of receipt of this correspondence. If we do not receive the information within 10 days, we will be unable to proceed with the processing of your complaint. However, the complaint may be reopened after the 10-day period if you can show good cause for no response during the timeframe. 
Thank you,

[Name Redacted]
Disability Branch
Traveler Engagement Division
Transportation Security Administration
[Phone Redacted]

~Success is not a destination, it’s a journey~

I spent over an hour on the phone with an incredibly nice woman who worked for the Disability Branch of the Transportation Security Administration. As I dialogued with her about the incident, we came to an incredibly troubling conclusion: The seasoned transportation security officer was following procedure. But that procedure harmed me due to my disability.

I did not bring this to TSA's attention for money or restitution.

I wanted education.
I wanted awareness.
I wanted respect.

And I am excited to say that we reached an agreeable resolution.

Hi Amber, 
Wanted to get back to you before too much time passed. I appreciate you sharing the information about your disability; Addison’s Disease, aka Primary Adrenal Insufficiency. I spoke with my supervisor about sharing the final document about Addison’s Disease with you. She agreed that it would be a great idea, and I will see to it that you get it. In making a determination about the document’s circulation, I decided that it will reach a wider audience if it is provided to ALL TSA airport management for their national shift briefs, where the information is shared with the TSA frontline screening workforce throughout the country. Training documents that will be provided directly to the [Airport Redacted] will include: Best Practices – Disability Etiquette; Best Practices – Reasonable Accommodation Requests, and Effective Communications. These materials provided by our office will serve to further educate and inform the officers at [Airport Redacted] about providing reasonable accommodation requests, effective communication and etiquette when interacting with individuals with disabilities and medical conditions.

I want to again thank you for speaking with me on September 15, 2017 to discuss your complaint regarding your screening experience at [Airport Redacted]. I want to also share about two services that may be of interest to you.
  • TSA Cares is a helpline for travelers with disabilities and medical conditions. TSA Cares agents have received special training to provide callers with specific information about the screening of travelers with disabilities and medical conditions. In addition, you may provide a TSA Cares agent with a flight itinerary before upcoming travel. The agent will notify TSA officials at the airports to allow them to prepare for your screening and assist you through the screening checkpoint. You can contact TSA Cares toll free at 855-787-2227 (Federal Relay 711) from 8 a.m. to 11 p.m. EST from Monday to Friday and 9 a.m. to 8 p.m. EST on weekends and holidays. We strongly recommend that you contact TSA Cares no later than 72 hours before travel. 
  • The Passenger Support Specialist (PSS) program was created to assist passengers with disabilities and medical conditions. Passenger Support Specialists receive specialized disability training, including how to assist and communicate with individuals with disabilities. Although they are not always available, the goal is to have a PSS in the vicinity of an airport’s checkpoints to provide proactive assistance and resolve traveler-related screening concerns. You can request a PSS at the checkpoint, or you can ask for the assistance of a Supervisory Transportation Security Officer.
Currently, I am having technical difficulties and unable to view any video footage, but did not want to delay reaching out to you regarding the informal resolution we discussed. You stated that as an informal resolution, you would be agreeable to the airport TSOs being informed about proper customer service protocol and of your specific disability. In order to get this process started, I am sending this email to receive your confirmation about the informal resolution. Please reply to this email and type, “I agree to this resolution” within ten (10) days of the date of receipt of this correspondence in order to close the complaint. If you do not reply with this statement within ten (10) days of the date of receipt of this correspondence, the Disability Branch will consider the proposed resolution agreed to, unless you can show good cause for not being able to respond during the timeframe. Please feel free to contact me by email and/or telephone at [Phone Redacted] if you need anything else. Again, thank you for sharing your experience with me. 
Respectfully,

[Name Redacted]
Disability Branch
Traveler Engagement Division
Transportation Security Administration
[Phone Redacted] 
~Success is not a destination, it’s a journey~

Concluding Thoughts 

In a separate blog post, I shall elaborate on what caused this particular crash. Like I stated at the beginning, I am a frequent traveler, and I have never experienced anything quite like this. Although it was an unbelievably horrible episode, something amazing came out of it.

Y'all, can we just acknowledge that ALL TSA airport management is going to receive information on Primary Adrenal Insufficiency? TSA airport management will be required to share that information with their employees during shift briefs?

That. Is. Huge.

TSA employs over 55,000 people and there are approximately 47,000 Transportation Security Officers. Forty-seven thousand people will hear about Primary Adrenal Insufficiency all because one seasoned TSO refused to give me access to my water and medicine. Perhaps that information will enable just a single person to remain Clearly Alive. And when it does, the experience was totally worth it.

Quote by Natalie du Toit. Photo by Quotefancy.com .

Saturday, September 23, 2017

The Realization of a Dream

I adopted my mom's love of the beach at a very young age. There is something soothing about standing on white sand while staring out into the vast expanse that is the ocean. It is refreshing. It is rejuvenating. It is where a soul can find peace.

2012. Florida Gulf.
Living with adrenal insufficiency makes beach going more challenging. The heat alone requires extra preparation, and care must be taken in order to prevent sunburns, which are extremely dangerous to us. At the end of almost every beach trip as a child, I would either vomit, pass out, or be in a really foul mood. My family did not understand the cause at the time.

2007. Hawaii.
Note the dead look in my eyes.
My adrenal insufficiency did not play nice during this particular vacation.
Even after diagnosis, I struggled at the beach. Oral pills take a while to kick in and I never figured out how to adjust them optimally. With the cortisol pump, I gained greater control over my medicine; however, my first pump was not waterproof. I became terrified of the water. I could either choose to have a good supply of medicine and not touch the ocean or I could revert back to a less effective form of treatment but get wet.

Either have good medicine or touch water. Cannot do both.
2014. Singapore.
In October of 2016, I obtained a waterproof pump. It was an exciting moment, full of endless possibilities. No longer did I have to choose between less effective medicine and avoiding the water. I was eager to swim in the ocean with the new device that enabled freedom from fear of the water.

WATERPROOF!
But, I was unable to travel. After regaining my freedom, I booked a flight to join my mom on one of her trips to Florida. I had one main request for our joint trip: Can we go to the beach from my childhood?

My parents have been taking me to this particular beach since I was in diapers.
We were able to make a trip to the beach.

My mom's love of the Florida Gulf is contagious.
I was able to walk into the Gulf of Mexico without fear.

Wading into the warm water for the very first time with the cortisol pump.
I cried as the gravity of the situation sank in. This was a dream that I had given up on. It was something that I had previously viewed as unobtainable. It was just a fact of life. And yet, I was accomplishing it. I was able to swim knowing that I was still receiving my medicine.

Is this dream really coming true?
I never want to give up on my dreams. I never want to believe the lie of "That is impossible. You have adrenal insufficiency. You can never do that."

"Look mom! I can swim!"
Perhaps, instead of the lie "No. You can never do that" I should state, "Not yet."

Don't ever give up on your dreams.

I will continue to live my life embracing this Clearly Alive mantra.
I will continue to believe in Not Yet instead of Never.

Saturday, September 16, 2017

Of Star Lord and Mickey: California, Part 3

The last time I had visited Disneyland was for a high school band competition over ten years ago. During my trip to California, we were able to visit both California Adventure and Disneyland. We began the day in the less crowded park, California Adventure.

California Adventure

California Adventure has changed since I last visited. One of the first noticeable changes happened to the roller coaster on Paradise Pier. The loop used to have Mickey's ears! I guess they moved the sun to the roller coaster and Mickey Mouse to the fun wheel.

You can see my cortisol pump attached to a holder on my arm.
That remodel happened over eight years ago, so I am quite a bit behind. Though I do remember loving California Screamin' in high school, and I loved riding during my most recent trip. That remained a constant.

Gotta have Mickey Mouse Ice Cream at Disney!
Another upgrade to Paradise Pier was the ride Toy Story Mania! Don some 3D glasses and adventure into different rooms aiming the spring-action launcher at various moving targets! It reminded me of an upgraded version of Buzz Lightyear Astro Blasters.

Ready for some Toy Story Mania!
I was the lowest scoring out of our group of three. My mom had the highest accuracy and she easily beat my score. But my theme park buddy* smoked both of us in terms of points. Never compete with a seasoned professional.

I'm not sure why I thought I could keep up with the seasoned pro.
Oh, and Cars Land did not exist the last time I visited! We ate lunch at Flo's Cafe. While Six Flags Magic Mountain does a very poor job of accommodating gluten free, Disney excels at it. Every restaurant has an allergen menu available, and all Cast Members we spoke to were knowledgeable about dietary restrictions. I didn't need to eat my pre-packed lunch!

Every third blink is slower in Cars Land.
In my opinion, the best change to the park was the remodeling of the Tower of Terror. Gone is the haunted hotel with that unruly elevator. In its place is a group of Guardians causing trouble with excellent background music.

The three of us standing in front of the BEST RIDE in the whole park!

Disneyland

After spending the majority of the day in California Adventure, we headed over to Disneyland to catch the Fantasmic! Night show.

Just us three goofing off.
I made sure to take salt tabs throughout the day, as we spent a good amount of time walking around outside. I also always had my water bottle. Disney makes it very convenient to find water. Between the two theme parks, a park run by Disney is much easier for me to enjoy with adrenal insufficiency than a park run by Six Flags. Overall, Disney just treats their guests better.

My mom and I with Aurora's castle and Walt and Mickey in the background.
As it began to get dark, we headed over to New Orleans Square for the Fantasmic! night show. Afterwards, we watched some fireworks, saw a bit of the electric light parade, and then rode the monorail to exit the park.

Alice saw the celebration button I was wearing and congratulated me during the parade!
It was an amazing day filled with new memories and adventures. We could have definitely spent more time in either park, but I am also perfectly content with everything that we were able to experience.

I am Clearly Alive and I am Free.

My Critique of the Rides

California Adventure

Name
Amber's
Score
Notes
8/10
  • I love this roller coaster.
  • At the start of the ride, you are accelerated from 0MPH to 55MPH in 4 seconds.
  • It is also the longest loop rollercoaster in the world.
10/10
  • FAVORITE RIDE IN BOTH PARKS!
  • They revamped the Tower of Terror Ride with a new theme and a new story line.
  • The new version opened in May of 2017
5/10
  • This is the perfect place to go when you need to take a break from walking around in the sun.
  • Short line, indoors, and sitting down.
5/10
  • There are two different types of gondolas: swinging and stationary.
  • I prefer the swinging gondola, but we chose the stationary gondola for the shorter line.
  • When you're at the top, you are able to see both parks and even construction on Star Wars land.
4/10
  • I did not enjoy this ride because I felt like the sound was too loud.
9/10
  • I greatly enjoyed this ride.
  • We were able to FastPass it, however the ride broke down during our FastPass time and remained shut down for several hours.
  • Right before we were going to exit the park, we decided to check and see if it was open again. IT WAS!
7/10
  • This was another ride I enjoyed greatly.
  • I love feeling like I can fly, and this ride has you soarin' all around the world in a relaxing manner.
5/10
  • We explored this area to escape the brief rainstorm.
  • In the Beast's Library, you can determine which Disney Character you are.
  • Apparently, I'm the Evil Queen from Snow White.
7/10
  • Very fun!
  • I did have the lowest score out of our group of three.


Disneyland

Name
Amber's
Score
Notes
4/10
  • Compared to Toy Story Midway Mania!, this ride seemed outdated.
  • The calibration seemed off.
  • Once again, I had the lowest score out of our group of three.
5/10
  • I was geeking out over the history of this Monorail.
  • Originally opening in 1959, this was the first transportation system of it's kind in America.
  • Walt Disney based it off of something he saw in Germany (because America has always been behind with public transit).
5/10
  • We rode this during the fireworks show, so there was absolutely no line.
  • Though half way through, the ride paused. We listened to Madame Leota's incantation several times.
9/10
  • You cannot visit a Disney Park without riding this ride.
  • The Cast Members recognized our theme park buddy*, so they gave us a boat to ourselves.
  • I love all the costumes, the colors, and the catchy tune.
  • Disney park tradition.
5/10
  • This is another perfect place to go when you need to take a break from walking around in the sun.
  • Short line, indoors, and sitting down, just an enjoyable ride.
7/10
  • With R2D2 and C-3PO as your tour guides, what can go wrong?
  • Highly recommend this ride.

*Astute observers might recognize my theme park buddy. He is an incredibly talented voice actor, and also a family friend. Check out his YouTube channel and his Facebook page. I challenge you to see if you can watch any of his videos without smiling.

Saturday, September 2, 2017

Of Bicycles and Beaches: California, Part 2

I consider my family to be nomadic. We have lived all over the United States, and I have lived in Asia on two separate occasions. For a while, my father even worked in Canada. Every place we reside, we discover our own favorite local activities. For California, my parents discovered riding their bicycles along the beach. They wanted to show me their route.

The spoiled kitties on their heated blanket inside their box.

The Early Morning Alarm

While I love the cortisol pump, it is far from perfect. Occasionally it will alarm to notify me of a malfunction. Although the number of alarms is drastically reduced with proper site changes, it is not eliminated.

Even though I am on the cortisol pump, I keep oral Cortef at my bedside with a bottle of water. If my site goes bad, there is no way to know the amount of cortisol that I have absorbed. This is especially dangerous at night. During those very infrequent times, I immediately swallow Cortef and wait for it to kick in. I do not want to be troubleshooting my cortisol pump on a low cortisol brain. That is a recipe for disaster.

At the first alarm, my first instinct was to silence it and pretend it was a dream. Thankfully, the pump is smart enough to alarm again if the problem has not been resolved. As you can see from my alarm history, it actually took three times before my 4AM brain went, "Hmmmm. I should probably fix this."

Things that you don't want to see early in the morning.
Note: It states "insulin flow blocked" but I use Solu-Cortef.

Thankfully, this alarm did not require a full site change. I swapped out the tubing and the reservoir. We have a phrase within our cortisol pumper community: "When in doubt, change it out." We memorize this phrase and repeat it back to each other. If something seems off or wrong, we need to immediately check our pump site.

There was a blockage in the old reservoir, but I am not sure of the cause.

With the pump no longer alarming and medicine delivery resumed, I was able to sleep for a few more hours. I am thankful that my early morning adventure did not prevent me from the actual adventure planed for the day.

From Venice to Santa Monica

Venice Beach and Santa Monica pier are located about two miles apart. My parents decided to park at Venice and ride our bicycles up to Santa Monica. 

Our proposed route.

In the past, I have had several pump infusion sites fall off due to sweat while I was participating in physical activities. This was before I discovered GrifGrips. It is an adhesive patch that glues my infusion site securely onto my skin. I can be active without a fear of sweating off my pump site! For my entire bicycling adventure along the beach, I had Mr Gator firmly protecting my pump site, with my pump in a case attached to my arm. I could ride a bicycle without hindrance! We were ready for adventure!

If you purchase using this link, you can save 10% off of your first order.

We decided to walk our bikes through the street vendors of Venice. Around lunch time, we began to hunt for a spot that could provide me with gluten free food. I walked up to the host of one restaurant and asked about their gluten free selection. I was met with a long pause and eventually, ".... Uh... We have salads?" My parents and I decided to move on.

I asked the hostess at the next restaurant if they could accommodate gluten free. The hostess chuckled and said, "Of course. We can make anything on the menu gluten free." I was skeptical, but decided to try it. We quickly snagged a table at Venice Ale House.

It turned out that the hostess was accurate in her assessment of their menu, much to my delight. There were ample gluten free options. In addition, they only served one type of macaroni and cheese: gluten free. They refused to serve their gluten free patrons sub-par food. Instead, they created a gluten free mac and cheese so delicious all patrons would enjoy. I am always appreciative of this philosophy. My medical conditions should not make me a second class citizen where I am charged a premium for less appetizing food. Sadly, that mindset is far too common.

My parents and I with Santa Monica Beach in the background.

After our delicious lunch, we continued our bicycle tour. We rode past the Original Muscle Beach and continued on, locking our bikes to explore Pacific Park and the Santa Monica Pier.

My parents and I standing in front of Pacific Park on Santa Monica Pier.

Throughout the bike ride, I would swallow salt tabs at regular intervals. I also added in some oral Cortef. Although I am on the cortisol pump, I still take oral steroids when I require a bit of a bump dose during days of extra activities.

My mom and I with the ferris wheel in the background.

All in all, we biked around four miles during the heat of the day. My parents considered sitting at the beach, but when I verbalized how fatigued I was, they changed their plans and we headed home. By speaking up and saying "I had a really good day. But I am ready to go home now and rest" I set myself up for future good days.

I am Clearly Alive.

Sunday, August 27, 2017

PSA: Adrenal Insufficiency and Sunburns (AKA an ER visit for IV fluids)

If you have adrenal insufficiency, be EXTREMELY CAREFUL when you get sunburned. A sunburn is a major trauma to the largest organ of the human body, the skin. Depending on the severity of the sunburn, it is either classified as a first degree or a second degree burn. It is known to cause dehydration and to require extra cortisol. In a human with fully functional adrenal glands, cortisol levels are known to rise in order to facilitate the healing of the sunburn.

Why do I feel the need to make this public service announcement?

My mother and I made an ER trip around 9pm on Thursday, August 24th. I had gotten severely sunburned on a gulf coast beach the day before. I made the error of not reapplying sunscreen after swimming in the water (despite my mother's recommendation). I also completely missed applying sunscreen to my left hip. Immediately after leaving the beach, my skin did not appear that red.

I could tell that I was burned, but it didn't seem that bad.
Also, remove older bandaids before sun exposure.
I shall have a nice bandaid tan line on my left arm.

However, as the night progressed, my back and hip turned significantly more red. We made a trip to a local pharmacy to purchase some aloe vera gel (I only buy gel that has aloe vera as the first ingredient) and some vitamin E lotion (I absolutely love the Australian Gold scent).

Thursday morning, I honestly thought I was doing well. The sunburn on my hip hurt, but it was not unbearable. I was able to attend an art exhibit of legos, and spend some time at a mall. My mom noticed me beginning to fade around 3PM. I took additional salt tabs and cortisol. By 4:45PM, we realized that I would be unable to handle dinner in a public place. I took additional oral Cortef to sustain me until I could get where we were staying to put in a new pump site. With the new pump site ( ... when in doubt, change it out... ), I increased my pump rates to "super sick" or triple dose.

My mom and I getting a pedicure.
This was taken about 20 minutes after the salt tabs and the cortisol pump bolus.

Even with an increase in cortisol, I was not improving. After several upset stomach episodes, and one unproductive vomiting session, my mom and I decided to head to the ER around 8:30PM. I knew my cortisol coverage was more than adequate. But that is only half of the equation with adrenal insufficiency. I was severely dehydrated. I needed IV fluids.

Notice how there are two paths on this flow chart.
Original can be downloaded here.

At the ER, I was immediately triaged as a Level 2. The triage nurse stated that this was the highest she could give me. Level 1 they reserved essentially for those flown in by helicopter on the brink of death. They were able to get me back to a private room almost immediately and start IV fluids on me within the hour. However it took them over an hour to deliver Solu-Cortef due to a Level 1 patient arriving around the same time as me.

My vitals at the triage station.
Incredibly high BP for me. Inappropriately rapid HR. And 98F is a fever for my body.
My BP always spikes before a full adrenal crash. It is my body dumping adrenaline in an attempt to keep me alive.

I was not incredibly concerned with the delay of Solu-Cortef because I knew they were working as fast as they could AND I was covered with cortisol through my cortisol pump. However, this brings up a very important point: ALWAYS INJECT SOLU-CORTEF BEFORE HEADING TO THE ER. I was a Level 2 triage. I had the highest level allowed without being dead. They treated me as urgently as they physically could. I had a private room in under twenty minutes while other patients were on beds in the hallway for over five hours. But even with high level of urgency, I still had over an hour wait before receiving an injection. An injection at home buys you precious time.

IV Fluids running in my right arm. BP cuff on my left arm. Cortisol pump attached to my hospital gown. And a washcloth over my face to block out the light for my migraine.

The ER staff at this hospital was absolutely amazing. We went to Tampa General Hospital, which is the main teaching hospital associated with University of South Florida. I was visited by a med student, a resident, and an ER doctor. The med student loved the flow charts provided by Adrenal Insufficiency United and requested to take pictures of them. The resident admitted that in cases like mine, it is crucial for him to listen to the expert in the room about the rare disease. And the expert is me. The ER doctor validated our decision to seek emergency medical treatment because a sunburn is a form of extreme physical trauma that taxes the adrenal glands.

I was released six hours later, after multiple bags of saline fluids, additional Solu-Cortef, and a migraine cocktail that involved Benadryl and Reglan.

Time stamp showing what time we were leaving the ER.

This did restart the counter for my number of ER free years. Prior to this episode, my last ER visit resulted in a three day hospitalization due to food poisoning from poorly cooked chicken in Kuala Lumpur, Malaysia. That episode occurred August of 2014.

But it is ok that I had to restart that counter.

Honestly, that number was artificially inflated due to my abuser. On three separate occasions, I begged my abuser to take me to the ER for IV fluids. He refused, telling me to shut up, stop being overly dramatic, he had the situation under control, and that I was "fine." He would then leave the room, often while I was still writhing in pain and agony. Once it was because his celebratory steak dinner was getting cold. Another time, he wanted to watch a different movie with my friends from college. The third time, he did not want to drive the fifteen minutes to the closest ER during the night. 

The ER staff expressed gratitude that I escaped such a covertly physically abusive marriage.

I am free.
I am safe.

And with the support of my family, friends, and amazing emergency medical personal, I shall remain Clearly Alive.


Amber Nicole's Tips and Tricks For Sunburns

Perhaps by typing them out in a list, I'll follow my own advice.
  • SUNSCREEN: Use it. Reapply immediately after exiting the water. It is better to PREVENT a sunburn than to TREAT a sunburn.
  • ALOE: Constantly apply aloe to the burn. As soon as it dries, reapply. This facilitates healing. I prefer aloe gel that is alcohol free and with aloe juice as the first ingredient.
  • ALOE WITH LIDOCAINE: The ER doctor suggested I use this before I go to bed. The short lived numbing agent will help reduce pain enabling me to fall asleep. 
  • CORTISOL: Immediately increase cortisol dose. Severe sunburns seem to require a triple dose for me.
  • IV FLUIDS: If the sunburn is severe enough and you notice your adrenal insufficiency start to flare, seek emergency medical treatment immediately. But be sure to inject before you head off to the ER or the ED.

I do not regret my trip to the beach.

I have other tips for surviving the heat with adrenal insufficiency on both my YouTube channel and my blog, but I completely forgot to speak on sunburns.

Saturday, August 19, 2017

Of Roller Coasters and Looney Toons: California, Part 1

While I was living in Malaysia, my parents relocated to California. I was allowed to visit them once, and that was over three years ago. With my new freedom, I prioritized a trip to see them. Our agenda included Six Flags Magic Mountain, Disneyland, some time at the beach, and the ability to hug my kitties from high school.

Missy Kitty does not appreciate being picked up.
But I have been picking her up since she was a tiny kitten, so she lets me.
She and her brother will turn fourteen this Christmas.

Six Flags Magic Mountain

When I was younger, my family had season passes to Six Flags Over Texas. We would go often, and each time I would be sick for days afterwards. This was before diagnosis and before the realization of my severe salt wasting.

Two (?) years before diagnosis with Adrenal Insufficiency.
I did have the diagnosis of hypoglycemia, so I was rocking the fanny pack with snacks.
We are much better prepared now. Trips to a theme park no longer make me sick for days. I am able to tackle them with increased cortisol, lots of salt tabs, a hat, and my own food. Pro-tip: You CAN bring food into places where no outside food or water is allowed. You have a medical condition. It requires your own food.

Through security with my backpack full of food and ready for some rollercoasters!
In high school, we would drive from Arizona to California with the sole purpose of riding roller coasters for "Magic Mountain Turn Around Trips." During one of those trips, I experienced a roller coaster unlike any I had ever ridden before. It was called X.

On this visit, I was determined to see if I had just dreamed that a roller coaster had chairs that would rotate a full 360 degrees WHILE flying through the track. Did such a thing exist? It did and it had been transformed into the X2. As soon as we were inside the park, we made a beeline for it.

I prefer to not wear my cortisol pump on roller coasters. I normally supplement with extra oral medicine and unhook the pump right before I get on the roller coaster. My mom chose to be the designated holder of all items, which was greatly appreciated. Right as we were about to board X2, it broke down. I had already unhooked my pump and handed my water off to my mom.

My mom is not scared of roller coasters.
Her neck does not like the twists and turns.
I factored in enough medicine and water to ride the roller coaster. I did not factor in the repair time. It did not help that the employees could not tell me how long the roller coaster would be down for maintenance. We were the very next people in line and did not want to give up our spots. We decided to wait, but I was apprehensive. I went over to my mom to fetch my water, and it was almost empty. I had already downed my entire bottle from waiting in line. I did not have a back up bottle and there was no water in sight.

I started to get a headache. This was a bad sign, and I knew I could not last much longer. A few minutes later, the roller coaster was cleared to resume operation. It was even better than I remembered, but I could tell that I pushed myself a tad bit too far. I was quickly approaching the danger zone of adrenal insufficiency. As soon as we got off the ride, I requested that we rest. This provided a perfect opportunity to eat lunch. I took additional salt tabs, additional cortisol, and purchased a secondary liter of water. I also had the staff refill my water bottle. I was determined to not find myself in the same water-less situation ever again.

Hats and sunglasses. Absolutely critical for being in the sun.
We did a combination of roller coasters, shows, and shops. While standing in line for Green Lantern: First Flight, I made the comment on how I don't regret any roller coasters. You can stick me on any ride, and I will enjoy it.

Silly us. We thought this ride would be fun!

I realized the stupidity of my previous statement as soon as I exited Green Lantern. I regretted that ride. It was not a fun ride. I bruised badly from the back of my legs hitting the bottom of the chair, and at one point my head whacked the back of the seat. I do not recommend this roller coaster. We had to rest after this one as well.

This ride. I do not recommend this ride.
After riding Green Lantern, my roller coaster buddy* and I became more picky about which rides were worthy of waiting in a line. The reality sank in that I am no longer in high school. I am a woman, in her late twenties, with several autoimmune diseases. I cannot hop on any ride. There will be consequences if I choose a bad ride, and these consequences will most likely be very painful.

Chilling in front of the Batmobile after the Green Lantern knocked us around.
With our new pickiness (and the realization that we are not as young as we once were), we did not want to waste any more time in lines of rides that were not worth it. We asked a park worker for his favorite ride. He recommended Tatsu.

One of our favorite rides.
My roller coaster buddy and I decided to end our roller coaster riding adventures with Tatsu. It was perfect. It was comfortable, I had no bruises, and I was able to fly! We started the day with an unbelievable roller coaster, why not end the day with another unbelievable roller coaster? We were content. To perfectly wrap up our day, headed over to the carousel.

If you do not enjoy riding on the carousel, you are not a joyful human.
To the outside world, my love of roller coasters seems counter intuitive. I struggle with low blood pressure, so it is not uncommon for me to black out during the quick twists and turns. I salt waste, so walking around all day in the heat can be a recipe for disaster if I do not plan appropriately. I am not a fan of crowds, and yet I will spend over an hour in a line for a few minutes of thrill. Why do I do it?

Riding in the last car on Goliath.
For those few minutes, I am not Amber Nicole, who lives with several autoimmune diseases. I am not worrying about my medicine or my water or my food or my fatigue. I am Amber who can fly! I am free. I am safe. And I am Clearly Alive.

End of the day and we're all still smiling!

My Critique of the Roller Coasters

Name
Amber's
Score
Notes
6/10
  • We had no line, which was awesome.
  • One of my favorites.
  • They have this same ride at 6 Flags Over Texas
5/10
  • This is California's version of the Texas Titan.
  • There's a helix in which you experience 4.5G's. For me, it means I momentarily black out.
1/10
  • Not worth it.
  • Similar to X2 where the seats can rotate, except they rotate in an uncontrolled fashion.
  • I had bad bruises on the back of my legs.
  • I also hit the back of my head during the ride.
10/10
  • The entire ride, you're face down, flying.
  • Incredibly comfortable seats.
  • Hands down, my favorite rollercoaster in the park.
7/10
  • The cars are able to rotate a full 360 degrees in a controlled fashion.
  • Enjoyed the music during the ride.
  • Due to the complex nature, X2 has a tendency to go down for maintenance. It would score higher if not for its unreliability.

*Astute observers might recognize my roller coaster buddy. He is an incredibly talented voice actor, and also a family friend. Check out his YouTube channel and his Facebook page. I challenge you to see if you can watch any of his videos without smiling.