Saturday, December 31, 2016

2016, A Recap

2016 started out with so many unknowns. We knew we were moving to Nevada, but beyond that we weren't quite sure what the future held. But enough with the introduction! Let's move on to the month by month recap!

January

Marvin, my Matrix, wasn't too badly damaged.
Her car definitely suffered more.
Insurance ruled that she was completely at fault.

One of our biggest motivations for leaving Dallas was to escape bad drivers. All doubts of moving were erased when I got into a car accident driving to my last day of work. A lady in an SUV drove her car into mine as we were coming off of a red light. I am very thankful to say I avoided the hospital, but oh did I have to increase my cortisol! I was amazed at how much the car accident shocked my system. I was showing signs of low cortisol hours and even days after the event. Dallas, thank you for your fitting good-bye. You can keep your crazy drivers!

February

We are slowly turning our new place into a home.
My Olive Thief loves the new floor plan. It has so many ledges for him to play on.

Our move lined up quite nicely with the FRC Build Season. Teams of high school students from all over the world are given six weeks to build a robot to acomplish a specific task for competition. Given the fact that we were unemployed engineers, my husband and I had no problem volunteering five to six days a week. When another adult mentor learned that I used to work in the semi-conductor industry, he passed my resume on to a few key people. A couple interviews later, I landed a job! Although I was unsure of what I would be doing before I moved to Nevada, I was pretty confident something would fall into place. It did, with perfect timing.

March

Echo, my husband and I on a dock at Lake Tahoe.

March was quite the busy month! We started out celebrating our second wedding anniversary at the Grand Canyon with a brief pit stop to meet up with another Addy friend. Shortly after we returned, I began my new job. We also adopted a dog named Echo! My husband visited the local shelter where a sweet "retriever mix" captured his heart with her meek whimper. In between all the activities, we decided to throw in a random 5k. To finish the month, my husband and I met up with some friends from college for a spontaneous weekend at Lake Tahoe.

April

Photographic proof that Mig and Echo get along!

April started out with a trip to the Las Vegas Convention Center for the FRC robotics competition. It was a little bit challenging to guess how much cortisol multiple days of full activity would require. The second day of competition, I had to hide in the hotel room all morning until my low cortisol migraine subsided. I was nervous that the high school students would view me as diseased and unreliable. When I finally was well enough to show up to the convention center, none of my fears were realized. They were happy to see me feeling better. Later in the month, my husband started his new engineering job. April also marked the official kick off of Action for Adrenal Awareness, where four of us hosted a live broadcast to raise awareness about adrenal diseases. Check it out here. I start speaking at around minute 46.

May

First time back on the bike in SEVEN years.
Also, we missed the "easy trail."

For Mother's day, my parents visited us. While I greatly enjoyed the time spent with them, I did end up getting sick, requiring a 100 mg emergency injection. A few weeks later, we hosted my husband's parents for dinner. We took great joy in being able to show our parents the life that we are building together in Nevada. Towards the end of the month, we took the dirt bikes out for a spin. It was my first time back on dirt bike trails in seven years.

June

After my husband's Tough Mudder. They leveled up their headbands!

During the month of June, we had a friend from Texas fly out to complete a Tough Mudder with my husband. I enjoyed watching them, but the altitude mixed with dehydration equated to another emergency injection later that night. We also BOUGHT A HOUSE! We were not expecting to put an offer on the very first house we saw, but we immediately fell in love with it. We submitted our official offer on June 28th for an August 12th closing.

July

After the 4th of July Fireworks show, we went to Walmart for a picture (and Gatorade).
Fun Fact: These are the faces behind the Theoretical Steroid Curve Plotter.
That tool would not exist without their help.

I took a spontaneous trip back to Texas for Independence day while my husband did a solo backpacking trip with the dog. To celebrate my husband's birthday, we attended a Philip Phillips concert, in which we realized we are now way too old to stay up late. July was also filled with multiple home inspections. I am incredibly grateful for both our Lender and our Real Estate agent. They worked together and guided us through our first home buying experience to make the process as stress free as possible. This was quite important, given my Adrenal Insufficiency.

August

Echo guarding our tent during a camping trip in Northern California.

August started with a trip to Austin, TX for an engineering conference. Later in the month, we took the dog and the dirt bikes and met up with friends for camping in Northern California. August 12th came and we closed on the house without issue. To celebrate, we welcomed in two additional adult cats to our Clearly Alive family. If you had warned me in January that our fur-ball household was to increase from one to four, I would not have believed you.

September

Family vacation in Pismo Beach, CA.
Also, the first time I got to see my brother and sister-in-law since their wedding in August of 2015!

My parents and my aunt and uncle visited as we showed off our new house over Labor Day weekend. On September 8th, my husband caused a minor car accident in my truck. A few days after the accident, we joined my family in California to celebrate my parents' 30th wedding anniversary. We left from there and immediately embarked on separate adventures. I had the pleasure of attending my former college roommate's wedding in northern New Mexico while my husband went to Wales for a business trip. 

When he returned to the house, he realized that my dirt bikes had been stolen off of the new property. Because they were not properly insured, all I got was "Too bad, you get nothing. And by the way, your homeowners insurance is canceled. Find a new policy provider." I immediately installed a home security system, which severely angered him. But I wanted to protect myself against more of my property being damaged.

October

The puppy exploring the crystal blue water of Lake Tahoe.

Thankful, October slowed down a tad. We purchased our dining room table and immediately christened it by carving pumpkins to celebrate my birthday. Friends from Texas visited and we had the pleasure of showing them the beautiful blue lake of Tahoe. We continued our work on the house, making it our own. We finished up the month by greeting trick or treaters with Wonder Woman and Santa Claus.

November

To honor our Assyrian heritage, I drew a picture of the Lamassu.
I started this in January and then gave it to my brother for Christmas, celebrated over Thanksgiving.

At the beginning of November, my grandparents visited from Florida. I loved being able to spend time with them and show off our house. My grandfather used his handy-man experience to teach my husband some things (like how to get electricity back in the kitchen when an obscure GFID outlet trips), and my grandmother fed us an amazing home cooked meal on our dining room table. I also participated in a project by a local photographer called "Beauty in the Desert" to celebrate my blog's fourth birthday.

Two of my husband's friends from college visited. I ventured to California for an Engineering certification exam, an Ikea adventure, meet up with college friends, and the ability to greet a fellow Addie sister, Debby. We finished up November with a Thanksgiving / Christmas celebration with my family in Arizona. I had a disease flare Thanksgiving afternoon and ended up requiring twelve hours of sleep, several zofran, and almost a triple dose of my solu-cortef the next day to stabilize. Got to love the holidays with autoimmune disease unpredictability.

December

My husband and I at his holiday work party.

My husband was sent to Wales again at the beginning of December. He returned to America just in time for us to attend his holiday work party. My parents also drove up to visit us for Christmas. I was horribly embarrassed as I had them visit my apartment, where I had been living alone since the purchase of the house. The kitchen was growing things, the cat litter desperately needed to be scooped; I could not attempt to hide the chaos.

A loss of a job, an out of state move, the leaving of in person support networks, the start of a new job, the purchase of a house, the addition of three fur-balls to the family, the mental checking out of a husband - these are a lot of changes for people with working adrenal glands! They left me to where I was just barely treading water, just barely staying afloat. Many times this year, it felt like I was absolutely drowning.

I broke down crying as my dad cleaned my kitchen and took care of the cats. I felt like an utterly incompetent adult, unable to handle just basic life. 2016 was a hard year, not necessarily because of hospitalizations or disease flares. It was just hard.

But you know what?

I'm still Alive. I had zero hospitalizations or ER visits. I have a stable job. I am beginning to establish friendships.

May 2017 bring stability!

Here are the recaps for 2015, 2014, and 2013.

Sunday, December 11, 2016

ICYMI, AFAA: Holiday Greetings

In case you missed it, Action for Adrenal Awareness released December's video on YouTube. This month, all four of us shared a few tips that help us manage the holidays. Below is our Holiday Message.


Amber Nicole


The Olive Thief as Santa Claus!

My encouragement to all y'all is to rest. Do not be afraid to sneak away from large crowds or group gatherings to hide and regain strength. Because happy stress, is good stress, but it is still stress. And living with Adrenal Insufficiency sometimes makes dealing with stress a bit difficult. Do not feel guilty about the need to rest. If anything, being well rested will help you better enjoy the time spent with others.

Debby


Debby sending us her greetings, as she's in the process of moving.

Debby is sending us her greetings for the last time from this particular kitchen as she is in the process of moving. She reminds us that if you are going to be traveling, make sure you have all your medicine (carry it on), your medical alert bracelet (you really should wear this at all times), and be very mindful of your hydration levels. Also, the holiday times normally involve meeting up with others you haven't seen in a while, and sometimes personalities can clash. If moving to another room to avoid that person is not an option, do not be afraid to updose.

Nichole


Nichole, with her furbaby Desmond. He makes Mig look TINY.

Nichole reminds us that over the holiday period, we are going to have a lot going on, so don't forget to up dose. But also, it is very important to remember hydration. We have a tendency to get so busy this season that we forget to hydrate. It is incredibly important to keep that water flowing and the electrolytes going.

Kim


Kim displaying her beautiful Christmas tree.

Kim points out that Christmas is stressful. Even if it is good stress, that is still stress because it is a change of routine. With that in mind, Kim suggests that we minimize. She uses her Christmas tree as an example. This year she swapped her huge tree for a "Spoonie Tree," which only took her a few hours to decorate and a significantly less amount of energy. She also mentioned her test run at Thanksgiving and how she admitted she had neither the strength nor energy to prepare an entire meal. She requested help, for the first time ever. She encourages us to think about ways we can simplify and minimize this holiday season to make it easier on ourselves.

Did we forget anything? Please comment below! 
Have a suggestion for a future topic? Suggest it here!


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Saturday, December 3, 2016

The Cortisol Pump: My Journey

Dear readers, I would like to explain more about my journey on the cortisol pump.

When I returned from Malaysia, I attempted to return to my Endo #6. While I was living abroad, she joined a practice with Endo #4, a doctor who did not play nice with me. When I arrived for my appointment with Endo #6, I learned that she had to unexpectedly quit practicing medicine due to a personal emergency. I would not be seeing her that day. It was likely that I would never see her again. To make matters worse, Endo #4 was covering all of her patients. He never saw me, but his Nurse Practitioner did. By a cruel twist of fate, my medical care was once again in the hands of Endo #4.

Endo #4 had improperly labeled me as a drug seeker in 2013 for attempting to discuss the pump with him. He was of the mindset that I should be able to take 30 mg of HC, once or twice a day, shut up, and be fine. Although he was supposedly a "Texas Super Doctor" very interested in research, he refused to consider any of the years of research put into this treatment method. Instead, he yelled at me on the phone calling me just some depressed girl addicted to steroid.

Two years later, his Nurse Practitioner scolded me on the phone for not seeking treatment from Endo #6 and the medical center she used to practice in. 

I told them I did seek treatment from Endo #6 and I was in her care for over a year. She switched practices while I was living abroad and I wanted to follow her to her new practice. That's how I unexpectedly ended up back under the "care" of Endo #4. I knew Endo #4 did not want to treat me. But what came next during that phone call with Endo #4's Nurse Practitioner caught me completely off guard.

Because I was on this pump for cortisol, I was forbidden from being seen by any of the nine endocrinologists in their practice. I was banished from an entire association of supposedly top rated endocrinologists because I sought a higher quality of life.

I was also back in America without a doctor while living with a chronic disease that quickly becomes life threatening without treatment. 

After another panic attack triggered by Endo #4, I humbly called the practice of Endo #5 asking her to take me again as a patient. I wanted to return to someone who already knew me rather than attempting to hunt for Endo #8. Endo #5 was very familiar with pumps for diabetes, however the concept of it for Adrenal Insufficiency made her nervous. With each appointment, I built a bit more trust with her. She never banished me and when I went to say goodbye because I was moving, she hugged me and told me how well I was doing.

I hope y'all understand why many of us on the cortisol pump are hesitant to share the names of doctors we've encountered during our individual journeys. Many of us have faced backlash from our medical providers, or the doctors themselves are nervous about backlash against them.

We are willing to encourage. We are willing to speak on the benefits and draw backs of this method of treatment. We are willing to let you know that you are not alone in your journey.

However, we are not always willing to give out individual doctor recommendations.

You must find the open door yourself, within your own medical providers. Just know that you will have us in your corner supporting and encouraging you along the way.

I got a new pump!
Medtronics finally offered us something waterproof.
Even this was a very emotionally draining and spoon intensive battle.