Sunday, April 24, 2016

To the Parent of a Child Living with Adrenal Insufficiency

My mom and I have been in your shoes. I remember the doctor coming in and hurriedly explaining the disease to us. No cure. Diseased for life. Steroid Dependent. Be mindful of stress. And yet, I can live a "normal" life?

Over the years, we slowly realized that we were not as isolated as we thought. We worked together, and learned together. As someone who has lived with this diagnosis for over a decade, I would like to share some insights with you.

1. Yes. Cortisol controls a lot. 


We had no idea that my frequent hospitalizations due to severe dehydration were symptoms of undiagnosed adrenal insufficiency.
The production of cortisol within the adrenal glands influences so many things. Heart rate. Blood pressure. Blood sugar. The ability to fall asleep. The ability to wake up. Balance. Appetite. Mood. Weight. Memory. Emotions. Electrolyte Balance. And this seemingly overwhelming list isn't even a fully inclusive! Doctors are still discovering more things that cortisol influences. The list is quite overwhelming.

The good news is that as you work out a treatment plan tailored to your child, some of these seemingly unrelated symptoms should resolve themselves.

2. Yes. This disease is worsened by stress. 


Holding a baby tiger in Thailand is a good type of stress.
Please do not view this as an opportunity to isolate your child from any situation that might be considered stressful. Instead, work with them to teach them how to identify potentially stressful situations and practice steps to help reduce the overall stress load. 

Also, please keep in mind that not all stress is bad. Extremely happy and joyful moments can still be considered stress on the body, but it's a good stress. To live life is to experience stress.

3. Yes. You will occasionally mess up. 


A note showing that I had to use my emergency injection recently.
A few years ago, a similar episode would have hospitalized me.
And that will probably cause your child pain. Please forgive yourself. We forgive you. We know that you are trying your hardest, and we know that this is not an easy disease to manage. Allow yourself grace. Do not hold the yesterday you accountable with the knowledge that the today you has. But do use the lesson you learned today to make tomorrow better.

Every day, you will continue to discover new things that will help you and your child manage this disease better. Welcome them as learning opportunities.

As your child continues to grow, know that your role in helping manage this disease will continue to change and evolve. Over the years, my mom went from being the sole one to manage my disease to allowing me to have full responsibility.

That being said, I know my parents are never more than a phone call away if I need them.

Photo with my parents at my brother's wedding.
Photo taken by Stephanie Brazzle Photography

This post was originally featured on The Mighty.

Sunday, April 17, 2016

A Letter to the Newly Diagnosed

First of all, welcome to the family. Although I am not sure of the exact path you took to become part of the "broken adrenal glands club," I would like to extend to you the warmest welcome.

As someone who has been on this journey for a little bit, I would like to share five things that I wish someone had told me immediately following my diagnosis.

1. It is ok to be scared.


Original doctor's notes as he explained the adrenal glands to my mom and I during my initial diagnosis. May 2005.
You have just been diagnosed with a rare disease that has no cure. The treatment also requires quite a deal of self management. It is ok to be scared. It is ok to feel completely overwhelmed. It is not ok to panic. As hard as it may sound, try to view this diagnosis as a gift. With a name, there is knowledge. With knowledge, there is treatment. With treatment, there is life. Focus on the fact that you are alive.

2. You will probably gain weight.


My cat standing on six pairs of pants that no longer fit me due to weight gain.
Please do not ever try to manipulate your medicine so that you can drop a few pounds. Please understand that your body was killing itself before you started your treatment. This weight gain is good. Yes, you will now need to focus more on a healthy life-style. But please don't ever view the steroids you take as the enemy. These steroids give you life. A larger number on the scale is well worth the price of remaining alive.

3. Your social group will change.


Chillin' with Big Tex on my birthday in 2014.
Yes, you will probably lose "friends." Yes, it will appear as if your social circle is drastically reduced. It is ok to let them go. Those that stick through your side during this journey are worth so much more. It is much better to have a smaller group that is unbelievably understanding and loyal than a larger group that abandons you during your time of greatest need.

4. You are not a failure.


Adrenal Crisis triggered by food poisoning. August 2014.
One of the first things your doctor might have told you is that it is still possible to live a "normal life," whatever that means. They may have explained that if you just take your medicine as prescribed, your disease will be managed. Well, flares still happen and sometimes they are completely out of your control. Forgive yourself. Every hospital visit, every ER run, every sickness, and every stress dose provides an opportunity for you to learn and adapt so that you will be better prepared for the next adventure.

5. You are not alone.


An Adrenal Insufficiency meet up from Jan 2014.
Yes, you have just been diagnosed with a rare disease that even the experts do not fully understand. However, that does not mean that you are alone in this journey. Reach out to others who have walked a similar path. If you  do not know where to start, reach out to me. I can link you up with several different networks. Lean on us for support. Do not further isolate yourself.

And again, welcome to the family. Let us continue to work together so that we can remain Clearly Alive.

My husband and I at my Decade of Diagnosis celebration in 2015.

This post originally appeared on The Mighty.

Sunday, April 3, 2016

Korea: 파이팅

I spent the fall 2009 semester abroad at a global university in South Korea. My university in Texas maintained an exchange program where engineering students could move to South Korea, attend classes in English, live in an international dorm and not fall behind in their course sequence. I jumped at that opportunity!

During international student orientation, I became very sick. But I still met an amazing Korean gal named Mi-Young.

Don't mind us, causing trouble.
Photo from 2009. Gunsan, South Korea.
I adored Mi-Young's love of life, her smiling spirit, and her slightly devious nature. We got along quite well.

"Ok, ok, ok, ok! You eat rice! I eat you!"
Photo from 2009. Gunsan, South Korea.
She was my go to person for teaching me important Korean phrases and explaining to me insights into her culture.

"Hi Five!"
Photo from 2009. Gunsan, South Korea.
The most useful Korean phrase she taught me was "fighting."

I was telling her about my classes and how I just did not want to do my homework. She put her fist in the air and shouted, "FI-TING!" 

I must admit, I was caught completely off guard.
"Mi-Young, what are you saying?" 
"FI-TING! It engrish word, no?" 
"Well, um... yes... technically fighting is an English word. But we definitely don't use it like that." 
"Oh." She paused as she thought about how to explain the true meaning of the phrase. "FI-TING! You go! You got it!"
파이팅, sometimes also spelled 화이팅, is a form of Korean slang based off of the English word "fighting." It is such a powerful phrase that I adopted into my own life.

"FI-TING!"
"Oh. We were taking a picture. I wasn't ready."
Photo from 2009. Gunsan, South Korea.
Scary medical test?
"파이팅!!!!"

Unknown medical diagnosis?
"파이팅!!!!"

New medical treatment?
"파이팅!!!!"

Monday morning dread?
"파이팅!!!!"

It's been over five years since I first learned that phrase from Mi-Young but I still find myself using it on days that I'm not feeling particularly "Clearly Alive." 

Try to shout out "파이팅!!!!" during a really stressful moment. See if it causes you to smile. I know it sure helps me.

"파이팅!"
Photo from 2009. Gunsan, South Korea.