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!


Medical Disclaimer

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

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

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

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

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.

Saturday, November 19, 2016

ICYMI, AFAA: Month by Month Adrenal Insufficiency Check List

In case you missed it, Action for Adrenal Awareness released November's video on YouTube. This month, Nichole gave us a checklist to help break things down into bite-sized chunks. Below is our guide to staying on top of Adrenal Insufficiency one month at a time.



January

Plan ahead, don't overdo it with NY resolutions that are unrealistic.

February

Good time to review your diet - is it working for you? What changes could improve your Quality of life?

March

Book your Endo bloods check-up, update emergency documents 

April

Think about booking holidays and travel insurance, planning ahead is key.


May

Could you get your supplements in bulk cheaper if you order online? Which ones are you taking and why? Have your reviewed these with your pharmacist or GP?

June

Review suntan lotions, mosquito repellent, electrolyte drinks etc. before it gets hot out.

July

How are you coping with the longer days? Are you sleeping OK?

August

End of summer, time to check B12, vitamin D, iron, bone scans, etc.

September

Back to school time also means reminder to check with employer about accommodations and your work/ life balance. 

October

Time to check expiry dates on all medicines and check in with GP and/or Endo once again.

November

Take a moment before the holidays to be thankful for how well you are managing your condition.December - Before the crazy of seeing all the family, plan and review how to talk with others about your condition.

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

Medical Disclaimer

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

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

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

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

Saturday, November 12, 2016

Beauty in the Desert

I recently participated in a project for a local photographer. She is publishing a book containing stories of people finding "Beauty in the Desert." Below is her description of her project.
Everyone has fought a battle in their own lives and has gone through something hard. This is what this project is about. See the beauty in something when you didn't see it at first. Showcasing each person in their own light and beauty.... This is not just about taking a photo in the desert and slapping the words 'Beauty in the Desert' on it. It is about seeing things in a different way. Truly taking a look inside yourself and all that is around you.
Adrenal Insufficiency is my desert. It is hard to find beauty in the words "Diseased. No cure. For life." But, there IS beauty. I just have to embrace it. I used this opportunity to take formal pictures without hiding my cortisol pump and without hiding my disease. It was my way of boldly proclaiming, "Yes. I have Adrenal Insufficiency. Yes. I am different. Yes, there is beauty that comes from this desert." Below is my story interspersed with her photos.
Many people in the chronically ill community are able to look back and reminisce about a time in their life before they were "ill," "sick," or "diseased." I do not have that luxury. 
Photo by Otter Love Photography
I started showing signs of an autoimmune disease at a very young age. In early elementary school, the medical community labeled me as hypoglycemic. I wore a medical alert bracelet and was constantly singled out due to my requirement to eat food every two hours on a very regimented diet. Often, what makes you different also makes you a target. Early childhood memories are filled with incessant bullying. 
Photo by Otter Love Photography
As I entered middle school, the treatment for hypoglycemia stopped working. My health was rapidly deteriorating. I continued to drop weight, and I developed an unnatural tan. Many in the medical community did not take my plight seriously. All they saw was a young girl with "model like beauty" crippled by anxiety. Why should a teenager complain about being tan and skinny? 
At band camp my freshman year of high school, I fainted and began having seizures. That finally got a doctor's attention. With that attention, I received a new label: Primary Adrenal Insufficiency, also known as Addison's Disease. 
Photo by Otter Love Photography
In essence, my body cannot process any form of stress. Be it the physical stress of breaking a bone or running a fever, the emotional stress of a fight with a loved one or the joy of reuniting with a dear friend, the mental stress of completing a difficult test or driving in congested traffic - if I do not take pro-active measures (including a constant supply of medicine), any one of those scenarios could lead to my death
There is no cure for Addison's Disease; there is only treatment that attempts to normalize my life. 
That was a lot of information for a 15 year old to take in. 
At first, I denied it. I hid my new label. I viewed it as something that made me weaker than others.
In 2013, my disease almost killed me. After countless doctor appointments with numerous specialists, I received a handful of new medical labels, including Post Traumatic Stress Disorder (PTSD) from medical trauma that almost took my life. 
In 2014, I received a new method of treatment for my disease. 
Suddenly, my invisible illness became very visible. I began using an external pump to deliver my medicine. While my quality of life improved, my ability to blend in and appear "not diseased" decreased. This small pump that is strapped to my body at all times makes me look visibly different. 
Photo by Otter Love Photography
I have a love / hate relationship with this cortisol pump. I love that I am no longer swallowing oral medicine five times a day that was destroying my stomach. I hate that I have to be careful about the tubing, otherwise I can rip it out, causing myself pain. I love that I do not have to wait for my medicine to kick in as it is now being delivered at all times. I hate watching people cringe and react with extreme discomfort as they realize the complexity of my life.  
Photo by Otter Love Photography
But this medical device, this external artificial adrenal gland, this pump, has enabled me to live my life more fully. I cannot ignore my disease or my medical labels. I cannot wish them away. Denial will only hurt me, and that could cost me my life. 
Instead, I shall embrace my diseases, my labels. 
Photo by Otter Love Photography
I shall find beauty in this desert. 
Photo by Otter Love Photography
I shall remain Clearly Alive.
Photo by Otter Love Photography 
Madralynn, thank you for providing me an avenue to share my story.

Sunday, November 6, 2016

My Husband's Tough Mudder

On June 11th, 2016 my husband completed his third tough mudder. This was the first tough mudder that I actually attended. I wasn't sure how my anxiety would handle the crowds, excitement, and stress for the event. But I wanted to at least try to watch.

Before the race. One of our friends from Dallas flew out to join him.
The event was held outside of Tahoe at an elevation of 6,800 ft. I'm still learning about how elevation affects my adrenal insufficiency. I moved from Dallas (elevation of 430 ft) to Reno (elevation of 4,500 ft). This event was held at an elevation another 2,000 ft higher.

They started off the course with a sprint uphill.
The entire route had 3,000 feet of elevation gain.

This is considered one of the more difficult tough mudder courses. The race starts out with a steep uphill climb. I watched them start and then decided to strike up a conversation with the EMT's located nearby at the finish line. I showed them my medical alert bracelet that still reads "Give drugs or watch die." I showed them my emergency injection kit. I asked if they saw me in trouble, would they know how to treat me? They said that while they do not carry solu-cortef, they do carry solu-medrol. That drug works just as well in stopping an adrenal crisis.

I also told them that if I start to crash towards an adrenal crisis, it might look like I am a drug addict going through withdrawals. I pleaded with them to not label me as a drug addict because if I am assigned that label, I no longer am viewed as human in their eyes. I have experienced that phenomena more times than I like to remember.

They were very encouraging. They told me that they don't encounter the same issues as the larger cities. When they see someone struggling (especially with a clearly labeled medical alert bracelet), they do not instantly assume "drug addict." They enjoyed the wording on my bracelet. They appreciated the organization of my injection kit. They assured me that they could treat me in an emergency.

I purposefully went up to talk to those EMT's. My Nightmare of an adrenal crisis that happened in 2013 gave me PTSD. During that crisis, my brain latched onto the thought that all emergency medical personal can easily kill me due to their ignorance. That thought process is not helpful.

I need to replace those negative harmful thoughts with more positive ones. Any opportunity I have to go up and casually speak with EMT's, I force myself to take it. I need to hear them say "Yes. I can treat you. Yes. I will treat you. Yes. I will keep you Clearly Alive."

The guys after their ice bath, with our friend showing off his bloody elbow.
I watched my husband and friend complete a couple of the obstacles. At one point, I even jogged along side of them on the course. I met back up with them at the finish line. I enjoyed the event and was thankful I had attended.

After they finished. It took them about 4 hours to make it through the course.
Note the leveled up headbands. That's a thing with tough mudders.
During the hour drive home, I started not feeling well. I took more oral Cortef, but it didn't seem to make much of a difference. I had a horrible migraine that was only getting worse. I slept through the celebratory steak dinner and ended up vomiting later that night.

I felt pathetic.

I was wearing my "No Limits" shirt and yet, here I was, this diseased girl, hunched over the toilet, unable to move. This is my life?

I begged my husband to make an ER run for fluids, but he forced me to self-treat at home through salt pills and additional cortisol (and after the ER charge nurse hung up on my husband after he started inappropriately yelling and cussing at them over normal triage procedures). I was hit with dehydration mixed with altitude sickness. I spent over five hours in the sun at an elevation of 6,800 ft. I did not drink nearly enough fluids, nor did I increase my steroid dose. 

I was both frustrated and discouraged. I had miscalculated how fast I dehydrate at altitude. I have very limited exposure to living at altitude and I am still learning how it affects me and my adrenal insufficiency.

The following day I rested. I remained on almost a triple dose of my cortisol and I missed the opportunity to say goodbye to my friend before he headed back to Texas.

I solidified three very important lessons through this experience:
  1. I cannot underestimate the effect of altitude on my body. I am very susceptible to altitude sickness.
  2. I must be incredibly pro-active about hydration. I dehydrate rapidly due to my salt wasting.
  3. I should have gone to the ER for IV fluids, but I was held captive by my abuser, also known as my ex-husband.
I am still adjusting to living in this new area of the country. With this new area come new experiences and new lessons. I shall hold onto the good, and learn from the bad.

The puppy and I recently on an adventure at Lake Tahoe.
Elevation 6,300' and I did not get sick! I'm learning!

Sunday, October 30, 2016

Guest Post: The Domino Effect

Yesterday, I shared the words of Des as she retold the story of Deb's adrenal crisis during the inaugural Adrenal Insufficiency Australia & New Zealand Association (AIANZA) meeting. Today, I would like to share the words of Jo. She was instrumental in making sure all Addys remained safe.

Please read her account of the episode on her blog "Living with an Addisonian."


Click here!

Saturday, October 29, 2016

Guest Post: On Advocacy

I've had the opportunity to meet with several different "Addies" over the years, and over the world as well. Wendy was one of the gals I had the pleasure of meeting a few years ago. She graciously opened up her home to me one weekend while I was living in Malaysia.

Due to some of her own adventures, she recently required medical treatment outside of Hong Kong. She went to Australia, where Des, another Adrenal Insufficient lady, graciously opened up her home. During Wendy's visit, the two of them decided to host a party. They invited all the Addies within traveling distance to join them.

Blue butterfly tiaras for the party!

Given the unpredictability of our disease, the party did not quite go as planned. They were visited by not one but TWO separate ambulances as two of the ladies slipped towards an Addisonian Crisis. If you're going to crash into a crisis, you might as well do it in the company of others who share the disease, right? Safety in numbers?

I would like to share the words of Des. She coordinated the meeting in Australia, where one of the crisises was caught on film.

All information and photos are shared, with permission, in an attempt to raise awareness.

A POST ABOUT ADVOCACY 

This whole experience that Wendy and I have had with Deb, advocating for her and taking this lady under our wing has really opened our eyes. We were just really lucky that we were in a position to help her as this is not always easy because of our geography, time, and local knowledge. We were fortunate to have all three things in place for us to be able to help Deb. 
To say that Deb had fallen through the cracks through the public hospital system in Australia is an understatement. She had not only fallen through the cracks but had been left dangling with the weight of all her medical issues about to pull her down into the abyss with no way out. Moving away from the city of Brisbane to a small coastal town on the Sunshine Coast, she needed to find a new GP and specialists. Unfortunately she landed upon the doorsteps of incompetent and uncaring doctors who had no idea how to treat her or an understanding of how her complicated history would put her in danger. Consequently she suffered many crises because she has been unstable because of the stupid stupid treatment she had been receiving from an incompetent Endocrinologist and other specialists over a period of 4 years but had no idea that the treatment was so bad. It was not until she stumbled across two support groups that have enabled her to reach out for help from people who live the disease, I don’t know that she would have survived. 
We all need someone in our corner fighting for us and if family or friends are unable to do this for us, we must reach out among our fellow Addys for help, and not be embarrassed about asking for help. This brings me to the topic of buddying up with other Addys in the area where you live, so you can have someone “have your back”. I know this is not always possible but worth trying for. I am lucky to have now met several Addys near where I live and Deb is one of them. Because this may not always be available to us, it is up to your National AI organisation to start work in this area, by at least providing a set of guidelines about the pathways to good care that you can follow yourself. 
The steps that we followed to help Deb receive good care unfolded after her crisis at my home when we gathered members for a small get together and the swearing in of a new Australian & New Zealand association, as the previous ones folded in both countries. You may or not already know, but we had two of us go into crisis that day, Michelle being so distressed and harbouring a tooth abscess infection that she didn’t know as brewing, also went into crisis. (it presented itself full blown a few days later) Deb was carted off to Nambour Public with her husband and Michelle carted off to Noosa ED. with myself in tow. The treatment was: Nambour pathetic. Noosa brilliant. 
Deb being stable by the time she arrived at Nambour, saw her arrive in a very busy ED, with a doctor deciding as she was stable left the nurse to tell her she can go home. He didn’t even see her, no bloods done, no examination. She had received fluids by the ambulance team but that was the extent of her treatment. Her medical records are there, which indicate that two weeks previously she was admitted through this ED in shock and passing black urine. She has some gastro-intestinal issues that were discovered when she was there, but she was sent home after only one consultation with the Endocrinologist and GI team, with no follow-up appointments made and no idea what to do next. She received a letter in the mail giving her an endocrinology appointment 6 weeks out! And still no news about her GI assessment or appointment. This is NOT good care for someone so ill. 
So it is no surprise that being sent home from the ED just about pulled her down into the abyss, still unstable after the crisis at my house, not knowing where to go from there, Wendy and I went to visit her the next day as we were very worried about her. Over the past month or so we had encouraged her to try spreading her doses out over the day as the dose she had been on for years was a total of hydrocortisone 40mg a day, 20 in the morning and 20 at 2pm! A ridiculous regime to follow and no wonder she wasn’t well! She felt some improvement spreading her doses out 4 times a day and for the first time in years she felt she could achieve small tasks, but she got excited and overdid things a bit too much. She had never received information about stress dosing and got into trouble so much when she was sick. Nobody ever advised her about this and not having the energy to research her own disease, it was lucky that she discovered the groups. 
With all of this she was still not doing well, and it was clear to Wendy and I that given her gut issues she may well be not absorbing or metabolising her oral medication well and the situation was getting desperate. We talked to her about trying subcutaneous injections to see if that helped and it did to some extent, stopping her diarrhoea and nausea. Wendy and I provided her with a few extra Act-O-Vials and small insulin needles that we use because we have pumps. However, in doing this, she really needed to have a GP appointment for follow-up within the next few days because this was new and not prescribed treatment for her. So, I organised a long appointment in two days, with my GP on the coast who I knew would treat her kindly and give her the time. Unfortunately the stress of meeting a new doctor and still being on the edge after her crisis just a few days before she had another crisis in his office and he quickly administered the Solu Cortef injection. It was obvious to this doctor that Deb needed so much help. and while she rested lying down in his office we were able to go through her medical history with him for her, as earlier that day, Wendy had produced a “body map” of her history that was easy to read and understand. He was alarmed at some of the treatment glitches, raising his eyebrows and shaking his head. His words, she really needed a multidisciplinary team to look after her and one specialist who could pull it all together for her. He agreed that waiting six weeks for a follow-up endocrine appointment at the public hospital was certainly not good enough. She had private hospital insurance therefore going private was the way to get better treatment. The trouble is on the Sunshine Coast, not being like a big city, gathering a group of the right specialists may be difficult. 
He was able to eventually find her a good Physician (what may be referred to an Internal Medicine Doctor overseas) at the Noosa Private hospital but she would need to go though the ED for bloods and stabilisation before being admitted. This long appointment ran overtime, but at no time did he rush her out his door, holding her hand and talking to her, telling her to look into his eyes and reassuring her that he would get her the help that she needed. 
The ED at Noosa hospital lived up to its usual reputation as being a very good place to land. She was treated well in there and admitted to the ward after a few hours. Wendy and I were with her until her bed was available. 
She was seen by the Physician the next morning and this doctor, admitting AI was not something he had come across since medical school, listened to Deb, read the “body map” about her medical history and remarked how amazingly put together this was and asked who had prepared it. (Wendy needs to expand this into a business for herself!) After listening to Deb he approved her subcutaneous injections as treatment for her AI, talked about all her medical issues, said he would gather all her records from the Nambour Hospital, remarked that she had fallen through the cracks terribly, and would gather a good team of specialists for her. He said he would also phone and speak to my Endocrinologist who is no longer working on the coast, about the possibility of putting her onto the pump. (If not possible to achieve a team on the coast, he would organise a team for her in a Brisbane hospital) Meanwhile there were some tests that he would organise for her while she was in Noosa. She was so happy when we visited her yesterday saying that this is the first time that she feels she is getting proper treatment, and that this doctor was extremely kind and sympathetic to her. Even though he admitted he didn’t know a lot about AI he was going to learn about it and help her. This is probably one of the most important things a doctor can do for a patient, admit that they don’t know it all, and willing to learn and work with you. Meanwhile we must all try to be the best educated person that we can be about our disease.
  

STEP BY STEP

Pull together your medical history and prepare it in easy to read format. Headings, Bullet point, starting at your most recent history with dates and listing down from there. 
Include any relevant family history (mother, father etc), allergies, surgery, medications.
Source a good GP / PCP. Ask around your area who is considered good. The pharmacy might be able to suggest also.
Schedule a long appointment 
Open the discussion with “I want to find a doctor who can work with me with my disease as I understand I am a very complex patient and I know my own body. If you don’t know about AI, if you are willing to learn and work with me I would be very happy to start there.” 
EDUCATE YOURSELF AS MUCH AS POSSIBLE ABOUT YOUR DISEASE. 
This enables you to hear the alarm bells going off when you are being told something that doesn’t sit right with you. Challenge them on this. 
BE PREPARED 
Arm yourself with little snippets of information in condensed form that you can show your doctor about your disease. Go to your support groups or national organisations and find the accredited information that they have available for patients to print out and keep in their file for when going to the ED or hospital. 
Ask your doctor to provide you with an Ambulance Directive. That is a letter than from your doctor about YOU and your disease and what treatment you need in a crisis. 
DO OBTAIN an emergency injection kit prescription (Solu Cortef Act-o-Vials, needles and syringes) from your doctor, and DO NOT take NO for an answer. You must insist on having this and know how to use it, and teach those around you how to use it. In crisis we may find it difficult to administer to ourselves as we are often too shaky. You must be prepared to act quickly, therefore don’t leave it too late to inject yourself if you are alone. If necessary print out documents from an endocrine society source (give to your doctor) that states all AI patients must carry an emergency injection kit, wear a medical alert bracelet, and a steroid dependent card. 
Take someone with you to appointments or the ED who can stand up for you and insist on proper treatment and care immediately. 
PUBLIC HOSPITAL ADMISSIONS - BEFORE YOU LEAVE
Ask about follow-up appointments - you may be told that a letter will come in the mail with appointment date etc. 
Ask for results of tests that were done while you were there. Obtain copies if you can. It is your right. 
If you feel uncomfortable leaving with no plan put into place about your ongoing care, speak up. 
Make sure you understand all medications you have been given and what they are for. Ask for written instructions to go with you about medications. 
If you have received unacceptable care, and feel uncomfortable about your discharge arrangements, go back immediately to your GP/PCP as your care MUST be ongoing and without delay.
Deb is doing better, and through the combined advocacy of several other Addies, her quality of life shall significantly improve. She has already been switched off of oral medicine and began sub-cutaneous injections of solu-cortef. She is actively pursuing the cortisol pump as a method of treatment to help stabilize her Adrenal Insufficiency.

Deb and Wendy.

Deb and Des.

Sunday, October 16, 2016

ICYMI, AFAA: Depression and Grieving in Adrenal Insufficiency

In case you missed it, Action for Adrenal Awareness released October's video on YouTube. The topic this month was on Grieving and Depression with Adrenal Insufficiency. Kim and Debby shared their insight, along with some very helpful information.


Debby starts out the video by sharing some of the more common symptoms of depression.

Debby shares with us some of the symptoms of depression.
She also makes note that another stage of depression is grief. This grief can cause the loss of friends, and a lack of energy as the new reality of our medication sets in. There is a loss of our former self as we go through this period in which we attempt to learn who our new self is going to be. She reminds us, however, that our new self is still pretty good.

Debby also highlights the four stages of grief: Reeling, Feeling, Dealing, and Healing. Although they sound similar in name, the represent distinctly different phases. Reeling is the stunned and shocked stage. Feeling is where the anger, deep sadness, and loneliness set it. Dealing is where you start to adapt to this new reality and plan for the future. And finally, healing is considered a recovery from the profoundly painful feelings. Healing is not about getting over your loss, but rather about learning to live with it. 

I found the classification of the stages very helpful.
She experienced feelings of sadness, the guilt associated with being unable to fully care for others, and extreme loneliness. But this is where the support groups come in. It is incredibly helpful to meet and talk with others that CAN relate, and the connection is instantaneous.

It is so important to remember that you are never alone. And you are never the only one.

For many of us, it is incredibly hard to distinguish the symptoms of depression from Adrenal Insufficiency. We highly encourage you to speak to your doctor.

Debby hands the video over to Kim, who reminds us again that this is both complicated and hard, but there is absolutely nothing to be ashamed about. Kim reminds us that low cortisol can cause a depressive factor but if this keeps happening it may no longer be just cortisol. Both serotonin and norepinephrine get depleted when chronically stressed. Cortisol does not touch either of those, which can get us into a dangerous loop.

Cortisol can fix the low cortisol. But it cannot touch the low serotonin and/or norepinephrine.
Kim encourages us to be mindful of this loop. Just like we need to replace the cortisol that our bodies are not making, we should replace the chemicals depleted in our brain. Kim follows this up with showing us a visual of the difference between a healthy synapse and a synapse of a depressed person.

The right side has much less neurotransmitters than the left side.
Kim wraps up the video with encouragement. Depression and grieving are both serious and very hard. Please do not feel ashamed. Do not feel like you are weak. Do not be afraid to seek additional help. We understand. We've been through this. We are sharing the things that we have learned and we want to help you.

Do not be afraid to use these references.

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

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Saturday, October 8, 2016

A Plan of Action

I have a well practiced elevator speech when it comes to explaining my Adrenal Insufficiency:
My adrenal glands are dead but I've been living with this for over a decade. I am normally very good about keeping on top of symptoms, however at times I still require assistance.
I try to take a very pro-active approach for managing my stress load. I was able to get through engineering college (with honors, while working) and although I am diseased, I request that you do not look down on me or judge me as disabled. 
If I suddenly get extremely irrational or emotional, it is not me. It is low cortisol.  
Here is my emergency injection of Solu-Cortef. Here are instructions for how to use it. Here is where I keep it. May you never ever have to use it. It's scary. However, if the situation arrises, please do not hesitate to inject me. It truly is a matter of life or death, and frankly, I'd prefer to remain Clearly Alive.
In September of 2014, I had an extremely emotionally taxing appointment.

The day after my appointment, I woke up with migraine. I tried to take more medicine, but I did not take nearly enough to cover my cortisol need. I knew I did not feel well, I just did not realize how bad it was.

I made it into work, but just barely. I went to fill up my water bottle in the break room area. I must have looked beyond awful. An unknown coworker took one look at my face and asked if I was feeling ok.

I told him no, I was not. I was horribly dizzy. He wanted to know where my cubicle was located, but I could not tell him. I could show him, but I could not verbally give him instructions. He escorted me back to my cube to make sure I arrived safely.

I attempted to sit down in my chair, but it was too high. I decided to lay on the floor, not really able to move and unsure of what to do. I probably laid there for around forty-five minutes until the coworker who sat across from me came into work and noticed me.
"Are you ok?!!! No, no, no, no, please don't be embarrassed that I caught you laying here on the floor. But seriously. Are you ok?
"I, uh, I think so. But I will let you know if the situation escalates."
"Do you need me to watch you, or, uh, can I run and go get coffee?" 
"You can go get coffee." 
His reaction to my situation caused a brief moment of mental clarity for me. I realized what I was doing was extremely stupid. I was clearly low on cortisol. I was battling a migraine, shaking, lethargic, incredibly dizzy, and did not want to leave the floor. My situation was also not improving. I had taken a little updose of my medicine, but it was not enough to cover my cortisol need. I took more.

Twenty minutes later, after the medicine kicked in, I was feeling well enough to be able to sit up. However, I still did not feel well enough to move or remain in a public place. I knew I needed to go home, but there was absolutely no way I could drive. I started to ask around to see who might be available. I finally worked up the courage to step into the cube of the coworker that sat right next to me. I was still fairly new to this team and had barely spoken to him. But he appeared to be my only option.
"Hi. I, uh, have a very strange request. I do not feel well right now. I'm too dizzy to drive. Can you drive me home? Like... now?"
My coworker dropped everything he was doing to take me home right then and there. 

At the time, my husband was working mere minutes from where we were living. He came home, checked on me, and determined I needed a 50 mg solu-cortef injection. My olive thief also refused to leave my side. After a three hour nap, lots of gatorade, and a tad bit more hydrocortisone, I felt alive again.

The next day, I returned to work. Several coworkers asked me about the incident, which opened up doors for me to explain more about my Adrenal Insufficiency. I had already posted items in my cubicle explaining an Adrenal Crisis, but many had just glossed over the information. However, my sudden disappearance caused several to revisit the material and read it in depth.

Poster can be found here.
Feel free to print and use. 
My coworker who first discovered me unable to move from the floor apologized to me.
"Oh my god! I did not take you seriously enough yesterday! I am so sorry!" 
I told him he actually reacted perfectly. He drew attention to the fact that I was NOT doing well which caused me to think, "Hmmm... I probably need more medicine." That extra dose of HC gave me enough strength to enable me to get to the safest environment possible.

I had my emergency injection easily visible in my lab.
That way, God forbid, if my coworkers needed to find it quickly, they could.
Get emergency information kit here.
Do you have a practiced plan of action for your Adrenal Insufficiency? If your disease flares, do you know what to do? Discuss this plan with those you trust so that when the situation arrises, it's a routine rather than a crisis.

My plan of action can be summed up in these simple steps:
  1. Increase medicine.
  2. Get to a safe environment, preferably one with low noise and little light.
  3. Make sure trusted people know my location so that I can continue to be monitored.
  4. Rest.
  5. Wake up Clearly Alive.
Let's all strive to remain Clearly Alive.

Displayed in plain sight, just like an AED.
Because in a crisis, I don't want you to have to hunt for it.
Poster can be found here.
Do you have any tips or tricks to add? Has a practiced plan of action helped you with your Adrenal Insufficiency? I'd love to hear from you!