Saturday, December 9, 2017

The Christmas Tree

A year ago, I hosted Christmas. It was a very chaotic time in my life due to the Narcissist, and I was unsure of what buried memories lay hidden in the box of decorations. I was dreading opening it this year, but ultimately decided I could do it with the help of an extremely playful kitten. My recent journey has been about creating new, healthy, safe memories. I was going to dive in and open this box.

I can do this.
This year, I had to purchase a new Christmas tree. Because I am living in an apartment, I opted for a 7ft pencil tree that came pre-lit. With Adrenal Insufficiency, it's all about saving spoons. A skinny tree that can be assembled in less than ten minutes was perfect for me.

Kitten has never seen a tree before.
As I was assembling my new tree, I realized that Mr Henry Glitch has never experienced Christmas before. This became quite obvious when he continuously pounced on each section as I removed it from the box. He did not know what this new thing was, but he was determined to defend his territory and attack it!

Every light is a potential toy that should be eaten.
For the past five years, I have created a picture ornament representing a happy time during that year. My family had that tradition growing up, and I decided to continue it. As I did not have the desire or the strength to unwrap my photo ornaments this year, they remained in the box. Perhaps next year, but for this year, the wound is still too fresh.

Tail! Tail! Tail!
Fortunately, the smaller tree has the benefit of requiring fewer ornaments to look fully decorated. I only unpacked the ornaments from my very first tree, which were a combination of Wal-Mart and Target final clearance. I even removed the ornaments on the lower portion of the tree as an attempt to reduce temptation for the kitten.

Too much stimulation. Kitten is exhausted.
Since I am being honest, I know that it is only a matter of time before Henry Glitch topples this tree to the ground. But, when he does, it won't matter because all of the ornaments are indestructible. My Olive Thief already tested them when he knocked down my tree in 2012.

At first, I was mad.
And then I realized I had a cat COVERED in glitter.
Any time I looked at my sparkly cat, I just laughed.
I was able to unpack some of the Christmas decorations, but not all. That is ok. Perhaps next year, I'll be more ready. However, this year, I do have an absolutely gorgeous tree complete with two fur-babies who add much joy to my life. And that is more than enough.

The guardian of the tree. Beware of his judgmental glare.
Merry Christmas, Y'all!

Saturday, December 2, 2017

A 5k in the Cold

I mentioned to a coworker that I was thinking about running a few miles on the dread-mill over the weekend to celebrate my six months of freedom. He asked why a dread-mill when there was another local 5k? I did not care that I only found out about the race the day before or that I would be running it alone. I drove to packet pickup less than twenty-four hours before the race and registered.

Rocking another Zazzle awareness item before the race.
I am still getting used to this weird season called fall. Most of the previous places I've lived only have summer and mild winter. From what I gather, fall means that you are going to freeze in the morning, be comfortable at lunch and then freeze at night. This race was in the morning. I froze.

Photo is from before the race. My nose was already numb.
There were two paramedics on bicycles for the race. I did go up to speak to one of them, but it was not to test their knowledge of Adrenal Insufficiency. I wanted a picture of my zazzle shirt and my sweet running pants.

Once again, I sprinted across the finish line. But there was no runner to pass. I was racing against myself, seeking that unexplainable joy.

Joy. Pure joy whenever I finish a race.
After the race, I found the sheet of paper where the times of everyone were posted, but something was wrong. I could not find my name. This concerned me, so I went over to the timing booth and asked about it. Because I had registered so late, my name was not yet associated with my bib number. But the man in the timing booth would fix it. He also mentioned I should probably stick around for the awards ceremony.

I won second in my age group!
Although I ran this 5k twenty seconds faster than my 5k with a mission, I did not run it fast enough to claim gold. Instead, I was awarded the silver medal. I am enjoying running in a significantly less competitive market than Dallas. Not only have I been able to return to one of my loves, I keep receiving tangible rewards for my efforts. It's some pretty good motivation for me to keep at it.

Another medal to add to the collection!

Saturday, November 25, 2017

A 5k with a Mission

One of my coworkers asked if I was interested in running a local 5k. Of course I said yes! Since moving, I have been able to more regularly run. I am working on building back up my running base. I would love to be able to try to touch some of my PR times from before my Nightmare Crisis in 2013.

At the start, rocking my Zazzle shirt.
This was my first race since the Reno Run 4 Love back in February. It was a very enjoyable course and it allowed me to view some of downtown. Though the end of the race was entirely uphill. Thank you, race directors.

Us crazy kids were smiling as we ran uphill.
I was just so happy to be able to run.
I had warned my coworker that I love to sprint at the end of the race. Some races I am able to sprint faster than others, but I never cross that finish line without giving it my all. As we rounded the last corner, he told me the finish line was up ahead. If I was going to kick at the end, I should do it now. I headed his advice and went for it.

She's smiling as she gracefully crosses the finish line.
Meanwhile, I sneak up on her from behind and BEAT HER!
When I sprint at the end, I am not doing it win the race or better my time. I do it because I get to experience an unexplainable joy. I am accomplishing something that I previously viewed as unobtainable due to my disease. Though, if I happen to pass someone in the last 100 ft of the race, and if that happens to make the difference between first and second place in my age group, you will not find me complaining.

All smiles after the race.
I did not realize that I won my age division until later that night. My coworker and I did not stick around for awards because we wanted to eat breakfast at an amazing diner that accommodates gluten free. A good race requires good food and good fellowship at the finish.

Rocking my Zazzle race shirt and my grif-grips pump protector.
These past few years have been filled with ample unknowns and uncertainty. I was forced to pack my life up into boxes over two years ago, and I am just now allowed the freedom to unpack. With that freedom, I am also able to rediscover some of my favorite activities. One of those activities is running. As for the prize for winning my age division? I don't think it could be any more perfect.

Clearly Alive.

Saturday, November 18, 2017

Introducing Henry Glitch

When I first met my Olive Thief, he was so small he had to be bottle fed. He was an orphan found with his two brothers in the wall of our welding lab at my university.

My first sighting of the runt, with the most pathetic squeak.
SMAW is climbing on his back.
I fell instantly in love with him and knew I had to have him.

Try to say no to that face.
If you have a heart, it's impossible.
Over the years, he has been blessed with friendships from a multitude of different fur-babies. The one that influenced his personality the most was that first dog. Mr Darcy taught my Olive Thief important lessons such as "Growl at the door when you hear a strange noise" and "It's not polite to fight with claws." Also, "If you ever need water, just drink from the toilet."

Mr Darcy, thank you for your amazing influence on my kitty.
A few years later, my Olive Thief had the opportunity to spend a couple of months with my cats from high school. They were not quite sure what to make of the rambunctious thing that disrupted their routine.

Missy, being a typical calico, was less than thrilled about the new addition.
Buddy was open to playing.
As I started my career, I took Buddy and my Olive Thief back with me. They were able to develop a deeper friendship after the separation of the diva calico.

Sweet babies.
Before I moved to Malaysia, I returned Buddy to my parents and the Olive Thief stayed with a friend. My Olive Thief was without another furry friend for over a year. He then was introduced to the sweetest of dogs. She was so relaxed around him, even though he constantly wanted to play.

Tail! Tail! Tail! I will attack the tail!
Sweet Echo just sleeps on.
A few months later, I was able to foster two additional cats. While Miss Charlotte had zero desire to do anything with my Olive Thief, Toby became good friends with him. It was similar to his companionship with Buddy, which it filled my heart with joy.

Occasionally, Miss Charlotte would play nicely with my Olive Thief.

That black ball of fluff is Toby. He needed his ears cleaned.
My living situation changed and I had to leave that state as soon as possible. I temporarily moved to a location that introduced my Olive Thief to two additional dogs.

Eventually, they learned how to share the human.
I state all that to give y'all background. I have a social kitty that has lived with four different cats and four different dogs. He does better in a community. Now that my life has stabilized, I decided it was time to give him a friend. Dear readers, I would like to introduce Henry Glitch.

This sweet boy is five months old.
I cannot wait to see what sort of adventures are in his future as he joins our Clearly Alive family.

I already know that they are going to be good friends.

Friday, November 10, 2017

Why Blog? Five Years Later.


Five years ago I published my first post on this blog.

My name is Amber, and I live with an incurable disease. How's that for a conversation starter?

Five years later, I am still starting conversations. I am still choosing life. I am still choosing optimism. And I am still choosing to share some of my stories here.

I am still Clearly Alive.

I will admit that it has been quite an adventure, with a few unexpected turns.

For example, I have lived in eight locations, three states, and two countries.

I have also had eight endocrinologists, three of them were horrible, and two of them were amazing.

I got married.
Three years later, I found myself escaping an abusive marriage.
I will admit that was never in the original plans. But I am both free and safe now.

With regards to my adrenal insufficiency...

Four years ago, we discovered that the Sodium Lauryl Sulfate in Qualitest hydrocortisone was poisoning me and it almost killed me. That one blog post alone has 25,000 views and way too many people stating "Me too."

On a more positive note, two years ago with the help of some of my engineering friends, I launched my theoretical steroid curve plotter tool. That tool has been used almost 10,000 times and has enabled many to achieve a higher quality of life.

I gained access to the cortisol pump a few years ago and learned a completely new method of treatment for this disease. With that, I discovered how much cortisol influences every area of the body.

Most recently, I had an adventure with the TSA that will result in 47,000 people learning about Adrenal Insufficiency. I am incredibly humbled by that.

And now?

I am six months post divorce.
I have an absolutely amazing engineering job where I am well respected.
I have a crazy kitty that still tries to steal my black olives.
I am thriving on the cortisol pump.

I look forward to continuing to learn about Adrenal Insufficiency and to share some of those stories with y'all.

After all, I am still Clearly Alive.
And I challenge y'all to join in with me.
Let's see where this adventure leads.

Saturday, November 4, 2017

The Retrieval of the Olive Thief

After the divorce from my abuser was finalized, there was no pressing reason for me to remain in Nevada. I decided to move back to Texas to be surrounded by family while I sought new employment.

After months of closed doors and promising interviews that led to no where, I accepted an absolutely amazing engineering position at a reputable company. The job required an out of state move, and a rather rapid one because they wanted me to start as soon as possible.

I packed up a few suitcases and traveled with my aunt to the new state but my Olive Thief could not travel with me for the initial move. I secured keys to my own place as soon as possible so that I could return to pick up my cat. He is a critical member of the Clearly Alive family and I did not want to be separated from him any longer than absolutely necessary.

I've had this cat since he was this size.
He and his two brothers were orphans found in the wall of the welding lab at my university.
I decided to do a turn-around trip in order to fly him to my new home. My flight to Dallas was at 8AM. My flight from Dallas was at 7PM, on the same day. In between landing and leaving, I would pick up the kitty. That's a challenging itinerary for someone with fully functional adrenal glands and I was about to attempt it solo. But I needed my Olive Thief.

In my correspondence with the Disability Branch of the TSA, I learned of a special program designed to help people with disabilities navigate TSA security:
"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."
This trip would be a perfect opportunity to try out these two services. I had no fear about my flight to Dallas, but I was incredibly nervous about my flight back with a cat. I did not want to introduce myself to any paramedics. I called TSA Cares.

The man I spoke with recorded my name, flight itinerary, and my concerns. He stated that when I got to the first TSO who is checking ID's, I should ask for a Passenger Support Specialist or a Supervisor. The officer will help me through security and there should be no issues.

The flight to Dallas was uneventful. I had to wait longer than I would have preferred at the rental car counter but eventually I was on my way to retrieve my kitty.

"I love you. I love you. I love you. I love you.
Now stop leaving me!"
It took me one week to pick him up and bring him home.
I decided to return to the airport ridiculously early in case there was an issue going through security.

Waiting in line at security.
If the cat is in a blacked out carrier, his anxiety levels decrease.
At the ID station, I showed the TSO my disability card. On the back of the disability card, I have taped an educational card provided by Adrenal Insufficiency United. This makes it more difficult for TSA to ignore information about Adrenal Insufficiency. I told the TSO that I had called ahead using the TSA Cares line and I requested a PSS or a Supervisor in order to assist me going through security with my cat.

I printed this off after my encounter with the seasoned TSO.
Sometimes I show it, sometimes I do not.
It depends on how I am feeling.
The TSO called for a supervisor because their particular check point did not have any Passenger Support Specialists. When the supervisor arrived, I informed him I have a medical device, a serious medical condition, and that I would like to opt out of the scanners. I was also traveling with a cat and I did not want to cause any trouble going through security. I disclosed how one of my recent encounters with a seasoned TSO required the intervention of paramedics, and I would prefer to avoid a repeat experience.

He treated me with the utmost respect and allowed the Olive Thief to return back into the safety of his carrier as quickly as possible. Once again, my suitcase was flagged for a secondary search. I believe some airports are now hand searching every bag that contains food. I was allowed to observe their screen, and they actually requested that I unlock my suitcase for them.

Once my bag was cleared, I received a pat down. My pump site was visible in the back of my arm, and the TSO completing the pat down had no issues. It took perhaps a total of ten minutes to clear all of security, with a cat.

"Please tell me you're taking me to a better place."
My Olive Thief was quite popular at the airport. Many people had never seen a cat on a harness with a leash before. I had one lady ask if she could take a picture of him to send back to her daughter. I had no idea I was traveling with such a celebrity!

Cat on a leash in my lap.
My face is slightly puffy here due to increased steroids.
I definitely upped my dose for this full day of travel!
The flight back, the Olive Thief was completely silent. He felt safe and secure in his carrier, which was actually lined with one of my pillow cases. This was actually his fifth flight in his six years of life. I remember when I told that to the veterinary technician, her response was "Your cat has flown more than me!"

"Just because I can fly, doesn't mean I like to fly.
Can we stop moving? Please?"
By self identifying to multiple TSOs before the security screening began, I increased the probability of being treated appropriately. I do not like to view Primary Adrenal Insufficiency as a disability, but truthfully, it is. Because it is a disability, we gain access to additional resources.

The presence of the supervisor and his help with my luggage drastically reduced the amount of stress of the experience. If any of those in the Clearly Alive community are apprehensive about traveling through airports, call TSA Cares. Ask for a Passenger Support Specialist. Ask for a supervisor to help you through the process. You have a medical condition, and there is no shame in requesting reasonable accommodations.

Will I utilize this service again? Maybe? It depends on the situation surrounding my flight. Most of the time, I have absolutely no issue navigating security. However, I do know that these resources exist and I will not hesitate to utilize them when necessary. I encourage y'all to do the same.

PS- Kitty was ecstatic to finally arrive at his new home.

We have a very happy Olive Thief.

Saturday, October 28, 2017

On TSA, Paramedics, and a Failed Pump Site

What actually happened on September 10th, 2017? Why did I suddenly crash towards an adrenal crisis? Though the end result was positive (all TSOs are going to receive information on Adrenal Insufficiency), the actual event was rather terrifying.

After a thorough analysis of the episode, I was able to trace back the what and the why to a few key items that compounded upon each other. Any of the items in isolation would have not been an issue. But stacking them together allowed me to introduce myself to some rather nice paramedics.

Let us start out with the what.

The What

1. The Water

I normally drink an entire 24oz bottle of water while standing in line for security. This trip, I had forgotten to fill up my water bottle before my drive to the airport. I was starting out the adventure water deprived.

2. The Wait

I always request to opt out of the scanners. I do not feel comfortable sending my cortisol pump through the scanner, no matter how many TSOs tell me that it is "safe." Nope. Sorry. I also do not wear my cortisol pump on roller coasters. It is a personal choice I make and I understand that opting out requires a pat down search.

When I formally opt out, they must call for "female assist." I requested to opt out and was told to stand over to the side. There was discussion between what to do next. One agent looked at another and asked, "So... do I need to call a female assist?" It took several minutes for them to notify the other TSO's that a female assist was required.

3. The Trainee

When they finally found someone to complete the pat down, I realized I would have a trainee and a seasoned TSO. A trainee normally implies a longer screening processes, as they are still learning the routine. I was already out of water, had waited longer than expected, and now my screening processes would be slowed down even more as the trainee verified that she performed each step correctly.

4. The Suitcase

My suitcase was flagged and pulled aside for secondary screening due to a large stack of papers. My suitcase was locked, but I provided the unlock code. The male TSO could not figure out how to open my suitcase. Some TSOs request that the owner of the luggage unlock it to speed things up. However, the seasoned TSO scolded me for attempting to speak to the male TSO about how to operate my lock.

Dear TSO: Line up the three numbers and then move the lock towards the red arrow.
Please do not break my suitcase.

The seasoned TSO opened up my suitcase after the male TSO struggled for several minutes. I was starting to not feel well at this point, but I tried to remain pleasant. I also tried to look at the screens showing my x-rayed suitcase. Once again, the seasoned TSO felt the need to prove her "authority." She informed me that observing the screens was forbidden.

That is inaccurate. I am not allowed to ask the TSO what they are looking for, or to ask them to explain the items seen on the screen. I am allowed to silently observe the screens as they determine that a stack of papers will not blow up the airport.

5. The Pump Site Location

Before beginning the pat down, a TSO will ask if I have any sensitive areas. I state yes, due to my medical device. I request that they do not touch my infusion site. They often tell me to place my hand over the sensitive area so that they will not accidentally touch it. I instinctively placed my hand over my infusion site without prompting for the trainee.

This irritated the seasoned TSO because she saw it as another attempt to undermine her "authority." We got into an argument with raised voices. She told me I could not tell her where she could and could not touch me. I told her that she was not to touch my medical device for my medical condition.

I figured as a valid compromise, I would show her the infusion site, and thus showing her I had nothing to hide. I was not trying to cheat the screening, but I did not want anyone touching my infusion site. I lifted my shirt partially and exposed my stomach.

That did not appease the seasoned TSO. She continued to emphatically argue with me that I could not pick an area for her to not touch. As the situation intensified, I realized that things were not going to end well for me. I wanted to prevent further escalation, but it was too late.

I explained the rest of the episode in my open letter to the TSA.

Additional Highlights

The TSO that was sent to fetch me water brought back two water bottles. Both were supposed to be for me, however he decided to open one for himself. I needed that second water bottle and it was obvious that he was not supposed to drink it. They made him go and purchase me a liter of water from the nearest store.

I drank the entire small water bottle.
The TSO purchased the Fiji water bottle.
I bought the Smart Water bottle once I cleared security.

There was also an issue with retrieving my medicine from my purse that was located inside of my suitcase. I clearly stated "The meds are in the purse in the suitcase." The male TSO agent had no comprehension of the word "purse." Another agent had to finally point out to him what a "purse" was.

In this suitcase we have salt tabs, my bathroom stuff, a bag of snacks, and a purse.
Hand me the purse.

The Paramedics

I am incredibly thankful for the intelligent paramedics. They were surprised that they were called in. I knew exactly what I needed. I knew exactly where it was. All the paramedics did was repeat exactly what I said to the TSOs. However, the TSOs listened to the paramedics. They did not listen to me.

Once I cleared security, the paramedics took my blood pressure and my heart rate. I was tachy, with a heart rate greater than 160BPM. My body had been dumping adrenaline, but I had no ability to calm it down due to TSA withholding my cortisol.

The paramedics were apologetic. They stated that TSOs are trained to treat "not normal" as "high security threat." Unfortunately, I have a disease that makes me not normal. I also have a disease that is hard to explain in a short amount of time to people unwilling to listen.

They told me that I had done everything correctly. They also were appreciative to learn more about adrenal insufficiency. They had read about it in their textbooks, but I was the first person they met. They would not forget the experience. I was cleared to fly.

The Why

But why did I crash? I have the cortisol pump. I was giving myself boluses through the cortisol pump as soon as I realized that the seasoned TSO was going to make my life incredibly difficult. Yet I did not stabilize until the oral meds hit my system. What made the pump ineffective?

A Failed Pump Site

The next day, I changed my pump site. It was what we refer to as a "bleeder." When there's blood in the line, there's no knowledge of how much medicine is actually being absorbed by the body. In this particular case, not enough.

There should not be blood.
My stomach was bruised and bleeding as well.
It is important to note that this was not an old pump site. I had changed it before I headed to the airport. It was only a few hours old. I also have not had a bleeder like this in many months.

When in doubt, change it out

I should have changed my pump site at the airport immediately after my crash at security. Instead, I delayed the change for an additional twenty-four hours. We pumpers can become rather obstinate when it comes to inappropriately rationalizing a bad pump site. This has the potential to get us in big trouble. That failed pump site caused me to take a large amount of oral medicine to stay functional.

If my body had been absorbing my medicine normally through the pump, I'm sure I would have had no issues going through security. However, because of this episode 47,000 people will receive a briefing on Primary Adrenal Insufficiency. I am still unbelievably humbled by that outcome. May it enable others to remain Clearly Alive.

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

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.