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.
Labels: Awareness, Random Reflections