Saturday, January 26, 2013

No Tea!

The night started out routine enough. My younger brother had a band concert at our school that our whole family attended. After the concert, we went out with a couple of families for gelato and fellowship. I remember speaking to a mom who had two sons attending the university that my friend and I were thinking about attending. My family and I enjoyed the fellowship and the gelato. As the night wore on, the conversation wrapped up. We gathered our things (and family members) and began our thirty minute commute back to the house.

Once back home, I began to get ready for bed. My mom was recently on a tea kick, touting all of its health benefits. She had many flavors, including the decaffeinated ones that were specifically for night time. I brewed a bag and then went to bed. That night I could not sleep! I felt so nauseated. I kept tossing and turning thinking if only I would vomit I could feel so much better! I associated the sick feeling with the last thing I had... that cup of tea.

Around midnight, I finally vomited. I was relieved. Ok, I thought, now I will feel better. I got the tea out of my system. I can sleep now. Except, that didn’t happen. As the night wore on, my vomiting became more and more frequent. By 6am, I was throwing up stomach acid every 15 minutes. My mom decided I needed medical intervention. Off to the emergency room!

My mom dropped me off at the front door so that she could park the car. I’m not exactly sure how I made it into that waiting room. My sight was going in and out of focus and I was blacking out regularly. I remember the front desk lady asking for my name and date of birth. I just started sobbing. I didn’t know how old I was. I didn’t remember my name. I had about three minutes until I would start vomiting again. Thankfully, my mom had returned to find me in a state of extreme confusion and very dizzy. She at least knew my name and could fill out the paperwork for me.

Still, there was no sense of urgency from the staff, not even after my mom stressed that I suffered from Primary Adrenal Insufficiency. The male nurse called my mom and I into a side room to fill out some more paperwork.

“How much do you weigh?”
“What?” I muttered through tears.
“HOW much do YOU weigh?!”
“I... I... I don’t know...” I was sobbing again, unable to focus on anything in the room.
“Ma’am, I’ll need you to step on this scale.”

“... mom …” I faintly muttered. I practically had to be carried over to that side room. There was no way I could step on that scale. My mom was growing frustrated. She looked at her watch.

“You have about a minute until she...” Right on cue I began to vomit on the rude male nurse. That finally got his attention.

“Uh... guess?!” My mom randomly shouted out a number as he tried to move me into a room. I have no idea how much time elapsed from when I first entered the waiting room to when I was finally admitted into my own room. I just know it was too long.

I also don’t remember how long I was in the ER. I want to say it was more than five hours. Once they finally took my crisis seriously, the hooked me up to an IV and started fluids with extra cortisol. I remember my actual nurse was a kind black woman. She came in to check on me often.

“I can see you are feeling much better Miss Amber.”
“What? How?”
“When you first came into see me, you were as white as those sheets you are sleeping on! Now look at you! The color is returning to your face!”

After a couple more hours of observation, fluids, and rest, I was released. I associated that ER trip with the tea. I refused to drink tea for five years after that trip.

This was also the first ER trip after my diagnosis. My mom and I were still learning how to handle it. Honestly, I should have gone to the ER after I vomited unexplained for the first time. We should not have let my situation worsen for another six hours before seeking treatment.

We should have also been more vocal in the ER. My Addison’s Disease was throwing me into an Addisonian Crisis. I was extremely weak, mentally confused, dizzy, vomiting, and unbelievably cold. They treated me as an average 17 year old with a stomach bug. I had to vomit on the rude male nurse before I was taken seriously.

In the end, I recovered fine. I returned home, exhausted, but alive. Also, I have finally worked up the courage to try tea again.

The tea actually had nothing to do with me getting sick.
I just falsely associated the two items together.

See my mom's response.

Saturday, January 19, 2013

Cortisol Dependent

“Amber, you have primary adrenal insufficiency. You will have to take cortef for the rest of your life.”

Although I consider my diagnosis the day I became free, it was also the day that I swallowed some very hard news. For me to live, I would have to take steroids daily. STEROIDS! The medicine that is supposedly really dangerous and has horrible side effects. And yeah, my medicine does have some have some evil side effects, especially if my dosing is just slightly off.

Cortef is the brand name for hydrocortisone. It is the most commonly used medicine to treat Addison’s Disease. I think I started out taking it three times a day? My medicine and dosage has been switched up so many times that I honestly don’t remember my first dosage. I know during cross country season, I would take a couple of pills before I ran. Hydrocortisone MUST be taken with food, otherwise you just feel icky. My cross country coach thought I was crazy when he learned that I would eat a full breakfast and then complete his workout. He preferred to run on an empty stomach. I preferred to not feel sick from my morning meds.

The problem with taking medicine in the morning is the fact that you must take it around the same time each morning. During the weekdays, it was pretty simple to take my morning dose at the same time. I would wake up for school, eat breakfast and take my medicine. During the weekends, I would want to sleep in. My mom and I quickly realized the importance of timing the hard way. If I took my medicine late, my entire day was thrown off. I felt horrible and acted like a brat. My father and brother wanted nothing to do with me. So my mom would come into my room at 8am on the weekends with a cup of water, my medicine, and a little snack. She’d wake me up and force me to take the pills and then tell me I could go back to sleep.

But... I couldn’t go back to sleep. Hydrocortisone woke my body up. Have you ever heard of a 16 year old who is happy to get up at 8am on a Saturday? But the consequences of not taking my medicine around the same time were way worse. I’m very thankful for my mom and her determination to get my medicine in me no matter how mad I was at her.

I have since then changed medicines and dosages so that the timing of my morning dose is not nearly as critical as it was in high school. Similar to how I had to learn about hunger and an appetite, I had to realize that the stereotypical teenage life was out of the question for me. I could never sleep in. And to this day, I still can’t really sleep in. But I’ll blame my cats for that.

Buddy is the mostly gray cat yawning. 
Mig is the mostly white cat.

Saturday, January 12, 2013

What is hunger?

I remember the car ride. I was 15 and riding shot gun, my mom was driving. I had just started my treatment for Addison’s disease. It was actually my first day on my new medicine.

“Mom... uh... my stomach feels funny."

“Funny like you feel sick? Or, what do you mean by funny?” My stomach then growled. “Amber, are you hungry?”

“I... uh... yes, I think I am hungry.” 

I had never spoken those words before. I had never experienced hunger before. Prior to my diagnosis, we thought I had hypoglycemia. I ate according to a schedule. Every two hours, I had a small snack. Doughnuts would make me sick if I didn’t eat them with a handful of sunflower seeds. If I didn’t eat, I would get angry, and then emotional, and then really shaky, and then nauseated, and then unbelievably tired and confused. I ate a small snack every two hours to avoid that. I did not eat because I was hungry, I ate to avoid getting confused.

So here I am, riding in the car, experiencing this new sensation. “Mom, I’ve never felt this before... I’ve never felt hungry before...” My mom was rendered speechless. Her 15 year old daughter was experiencing something so basic to human existence for the first time.

It was odd learning about an apetite. Most people have many more years of experience than I do. Am I truly hungry? Am I thirsty? What does being full feel like?

Now that I know what an appetite is, I can use my appetite to judge how healthy I am. If all of a sudden I am never hungry, something is wrong. I might need to increase my cortisol. If no matter how much I eat I still feel famished, I have too much cortisol in my system. It is another way I have learned to manage my Addison’s Disease more efficiently.

Saturday, January 5, 2013

The Beast

I was texting a friend about how at times Addison's can be scary. He asked me the simple question, "What's scary about it?"

"I think I have this beast controlled and then I'm reminded how I don't."
"The disease?"
"Yeah. Maybe I should view it as something I shall never fully control. Instead, it's something I work with, symbiotically."

This was something I had not considered before. I always viewed my disease as something that I must manage, I must fully control it. If I take my medicine properly, eat healthy, sleep regularly, and reduce all stress I can box up my disease in a nice and neat box that can be stored on the top shelf where I can forget about it. The disease is managed. I may return to daily living forgetting my burden.

But life doesn't work that way. Unexpected things happen. Nothing in life is fully controllable. So maybe I shouldn't view this disease as something I must control. There are actions I can take that help me manage it better. But I cannot control every aspect of it.

This realization releases much tension and pressure. When I get sick, it'll no longer be "What did I do wrong?!!!" The burden is lifted. Which is kind of nice, considering I came down with a horrible infection recently. Tuesday through Friday are somewhat of a blur for me. And I'm still not fully recovered.

I refuse to let Addison's Disease control me. I will stop viewing Addison's Disease as something that I must control. I cannot ignore it. I cannot minimize or down play it. But I can choose to work with it.

I choose life.

I choose to remain Clearly Alive.