Sunday, June 23, 2013

The Nightmare

It's now been two months. I tried to record this nightmare the day after it happened, but I couldn't. I couldn't put everything down into words. It was too scary. It was too vivid. I normally am extremely head strong and determined, but this experience left me weak and defeated. Like all good nightmares, I am able to wake up from it. The horror is over. And as more time passes, the vivid flashbacks during the day have subsided.

The whole situation was just so scary and a big wake up call for me. I have read stories online about how others have had bad experiences with ER doctors and "standard protocol." Stories like Annie's are heart breaking. But I always thought I was safe. Yes, I've had a few scary ER trips, but the medical staff eventually did the correct thing.

For some reason, I was just especially dizzy the week of April 15th. Yes, I normally battle dizziness, but this was different. Something was off and something was wrong. I just didn't know what. April 18th, I ran out of spoons at 7:30 pm. I woke up eleven hours later, dizzy and extremely nauseated. I didn't think I could make it through the entire day at work. So I called my mom. She told me to stay home and call my endocrinologist.

My endo didn't know what to do so she said go get blood work drawn and then see her that afternoon. I still felt so dizzy, but I knew I should get the blood work. I probably shouldn't have driven, but I did. I safely made it to the medical complex. I almost passed out getting blood drawn and did not trust myself to drive home at the time. I have no concept of how much time passed. I decided to go upstairs and see if I could still have an appointment with my endo. I just waited in her office until she had time. 

The appointment was basically pointless. She didn't know what was wrong with me and blamed my tiredness and weight loss on depression and my constant nausea on being pregnant (I'm pretty sure to get pregnant it takes TWO people). She also wanted to know what happened to me. I was doing so well only a couple of months ago and now, I wasn't. I didn't know what had happened to me, which was why I was in her office. 

My endo told me I should go see a primary care physician and handed me a card for a doctor down the street. I got into my car (some how) and called my mom. I told her I was still dizzy and out of it. My mom told me to call the PCP. It turned out they could see me that day if I went immediately. I drove the two minutes to his office. The front desk lady mentioned how it looked like I didn't feel well. I told her I didn't, which was the main reason why I was in this office.

Back in the examination room, one of the nurses asked me to tell her all the medicine that I was taking. I started to cry a little out of frustration and exhaustion. I was so dizzy and it took so much effort and energy for me to speak. I could barely see the the room around me, it would not stop spinning. Also, I had just written down my medicine in the waiting room. It was going to take me too much mental effort for me to explain my medicine to her verbally. However, if she handed me a piece of paper I could write them down for her (again). For some reason, writing takes much less mental effort for me than speaking. I asked her for the paper, but she said it was ok and she'd just go look at the paperwork that I had filled out only moments prior.

Another nurse came into the room and took my temperature. I was running a fever for me, but it was considered "normal" by the medical community. This new nurse informed me that she'd need a urine sample since I was complaining of nausea and dizziness.  She led me to the bathroom and I almost passed out right then and there. I had to use the wall to catch my balance. This was getting worse fast, but I had no words or strength to explain to the staff my quickly escalating condition.

Then the doctor came into the room. This was the first time I had met him. I told him I had Addison's Disease and that I was not feeling well. He started asking me questions, simple questions. I couldn't understand them. I couldn't answer them. This scared me. I knew I was slipping closer and closer into a crisis and it was not going to be pretty. I started crying as I realized that I was truly beginning to crash. I began to shake uncontrollably and then the world started to go dark on me. I remember him faintly asking me what I wanted and if I needed to go to the ER, but I couldn't answer.

I felt my body convulsing and seizing up. I was hyperventilating and I couldn't control my body.  I think I was vomitting or trying to, but I don't know. Everything is such a haze. I was scared. I was alone in a doctor's office where no one knew me and this was rapidly turning into a full blown crisis. The doctor called the ambulance. I remember someone shoving a bag into my face telling me to breath slower and calm myself down. I think there were a couple other people holding down my arms and my legs, but I honestly don't know.

The doctor knew I had Addison's Disease, but the EMT's had no idea what that meant. I tried shouting out "Crisis! Disease! Shot! Solu-Cortef!" but I don't know how coherent I spoke. The doctor called my mom on the phone and told her that I was screaming out in pain. I was not in pain. I was slipping into a crisis and knew I needed the life saving medicine of cortisol. The shot was just a reach away in my purse. But no one was listening to me. They just strapped me down tightly to the stretcher, as I could not control my convulsing. Off I went to the emergency room by way of ambulance.

This particular nurse in the ER was an ass. Forgive my language, but she really was. She treated me as if I was an addict and a drug seeker. Friends, please hear me when I state this: MY STEROIDS ARE NOT SOMETHING YOU WOULD WANT TO ABUSE! I wish the medical community would understand this. Yes, I am steroid dependent. But do not treat me as someone who is addicted to illegal drugs. I deserve more respect. I do not see the medical community refusing to give someone insulin because their pancreas no longer works. Why do they maintain this misconception about cortisol?

But this particular nurse wanted me to answer every single question as I'm blacking in and out of consciousness and seizing up. I tried to tell her I'd answer everything after she'd give me that shot because I'm not mentally competent. 

"Well, you were able to give your mom's number and your social security number. You seem pretty mental competent to me now." Her tone was one of condescension and of a taunting nature.

"I have those memorized. Shot. Please. Cortisol. Need cortisol." I'm still convulsing and I cannot see anything in the room. But she didn't care.
"You're already on steroids. Why do you want more right now? This is pretty dangerous medicine."
"Addison's Disease! Crisis!"
"You keep saying that. But I do not know what that means. Could you explain it for me please?"
"F**** google it!" 

Hint: That is not a way to make the ER nurse your friend. But I was scared, alone, and the nurse was being an idiot. She didn't seem to care about my medical alert bracelet that clearly stated "Steroid Dependent" or that a doctor was the one that called the ambulance for me. Eventually, she gave me the shot of cortisol.

I stopped convulsing after it hit my blood stream. Slowly, I could relax my body and open my eyes. The world was coming into focus. Her response? "Wow, I've never seen this medicine work that fast." That is something else most of the medical community does not realize. The steroids I take are often used for anti-inflammatory purposes. For those taking the drugs for anti-inflammatory reasons, it normally takes over an hour for the medicine to kick in. Cortisol to me is like insulin to a diabetic. I take much lower doses than those on steroids for their anti-inflammatory properties. I am just supplementing what your body naturally produces. I don't need to wait an hour for it to work. 

"Thank you for finally giving me my medicine. Ask me any question now and I will answer it for you."
"I'll need to collect a urine sample from you."
"What? Um… can I have some IV fluids? That's the standard protocol."
"Not yet, we need that urine sample."
"Um… I'm still shaking slightly." There was no way I could get up out of the ER bed and go to the restroom for yet another urine sample. The effort it took to walk into the restroom at the PCP's office was what sent me over the edge that landed me the ambulance ride to the ER in the first place.

She just rudely and dispassionately stated, "Well, we can cath your bladder. There's always urine in your bladder since you refuse to pee in a cup now." I was flabbergasted at how rude she was. I was still being treated as a drug addict just seeking attention. I told her no thank you and I'd give her her *** urine sample. I barely had the strength to walk, so I was escorted via wheel chair.

By this time, my brother and two dear family friends arrived. When the ER doctor finally stopped by, I informed him sternly that he took too long to get my life saving medicine in me and that was unacceptable. He could have killed me.

He shrugged his shoulders and coldly stated "Well... it's hard to stick an IV in someone in the fetal position." My friends and brother were shocked that he said that. I was curled up in that fetal position when I first arrived because my body was convulsing! I informed him that he should get in touch with my endocrinologist because she could explain my situation. My second endocrinologist was always my strong voice and ally when I was in the ER. I was expecting this endocrinologist to do the same, especially because I had just seen her that afternoon and she stated that if I felt worse I should go to the ER.

Nope. She talks to him on the phone. And then talks to me on the phone. Then she has the nerve to tell me, "Amber, I don't think there was any way you could have gone into a crisis. You take your medicine daily. No. Are you sure you aren't depressed?"

I had her on speaker phone so that my friends and brother heard the conversation. They were beyond livid. I was horribly discouraged. I had previously trusted this doctor, but in my time of need she failed me miserably. I was at the hands of a medical community who viewed me as a depressed drug addict. They wanted me out of the hospital. Thankfully, I did have strong advocates in that ER room.

When the ER doctor informed me that they were going to release me, my friends and brother looked around uneasily. I guess I was still as white as a sheet. My younger brother stepped up as my advocate and sternly stated, "Let me put it this way. We are not comfortable with her going home tonight. She's staying in the hospital."

"Well, we already gave her half a bag of fluids."
"And normally she gets two to four"

Oh and I didn't even elaborate on how the ER forgot about me for probably a good hour. I complained to the rude nurse about how I had a headache. 

"What do you want? Tylenol? Morphine?"
"Um… how about a sandwich? I think my blood glucose is low."
"Well, you'll be released before the food cart is brought around." She walked out of my room. I was so thankful that my friend could go and hunt down another worker who gladly brought me food.

When I was finally transferred to the hospital floor, I found out that the ER doctor did not write any follow up procedures. Standard protocol for my disease is to continue steroid doses intravenously as I am being monitored. But he didn't do that. He just wanted me gone.

Things did get much better once I got out of that ER room and onto the hospital floor. My nurse on the floor was absolutely amazing. I asked her what I should do about my medicine, because if I didn't get more steroids, I'd probably slip into another crisis. She said that I should go ahead and take my medicine that I cary with me because she had no follow up procedure for me. Can you imagine what would of happened if I wasn't already in the habit of carrying five days worth of all my drugs? I would have slipped through the cracks again.

She also said, "I'm not supposed to tell you this considering I work here, but... don't EVER come back to this ER again. They honestly didn't know what to do with you."

My brother and I spent the night in that hospital room. The next morning, I saw the hospitalist. My brother and I told him my experience in the ER and it sickened him. He was especially disgusted about my phone call with my endo. Also, the ER doc should have written up orders for me to continue cortisol via IV. 

He firmly stated that I should never ever come back to this ER or hospital because they almost killed me. He did not know that the nurse on the hospital floor the night before gave me the exact same advice.

I always thought because I lived in a big city, everyone would be familiar with Addison's Disease. This was my first experience where the ER didn't know about Addison's and refused to listen to me. I had my medical alert bracelet. I was clearly labeled as being steroid dependent. I knew something was off with my body. I just didn't expect to crash so quickly. And then to deal with such incompetent medical people. 

I definitely had haunting nightmares about medical professionals killing me due to their ignorance for the following weeks. Overnight, I went from being clearly alive to timid and fearful. This experience knocked me off of my feet. I tried to remain optimistic by launching things such as ClearlyAliveArt, but I was still deeply troubled and scarred.

It has now been two months. My life is starting to return to normalcy, but it's a new normal. I've put a pause on running. I am now extremely cautious about my energy levels. We started on a mad journey to figure out what triggered this crisis because it is crucial for us to understand what happened so that it will not repeat itself. We believe we are close to an answer (and after a good solid month of countless doctor's appointments, I would hope so!) But we aren't quite there yet.

I will not give up the fight, no matter how tired I am. I will fight for my health. I will fight for my life. I will fight to forever remain Clearly Alive.

See my mom's response (Part A).
Revisit The Nightmare.

Saturday, June 8, 2013

When You Cannot Run

I had another doctor's appointment with another specialist on May 31st. It is always such a victory when  I feel like a doctor has listened to me and validated my concerns. This doctor did. She promised me that we would all work together as a team to get me feeling better. My mom and I were filled with hope as we realized that I was in good care.

Though she did give me some difficult news and a good reality check. She informed me that it will take me many months to fully recover from my Adrenal Crisis on April 19th. During these next few months, my body is still in an extremely weak and fragile state. I must guard my energy, limit my amount of stress, and to be at peace with my current situation. She basically quoted me the Spoon Theory, but used medical terms. Then came the difficult news.

"Amber, I am going to tell you something different that no other doctor has ever told you. Do not exercise. Not while you are still in this fatigued and weakened state. And absolutely no running."

My mom reached over and grabbed my hand at that moment, as tears started to form in my eyes. My mom explained to my doctor that not only am I a runner, but I am also a long distance runner who ran a half marathon not even two months prior! And now I'm told I must give up running for possibly six months?! I had a 5k race the very next day with my former college roommate. She was set to arrive at my place in only a couple of hours! But then my doctor added a caveat.

"Walking is fine. Just do not over exert yourself."

I left that appointment hopeful, yet somber. I'm slowly realizing this isn't something that has a quick recovery time. If I push myself too far too fast, I will get worse. I need to allow myself proper time to recover. This is hard because I just want to fix it. Sadly I can't. I must come to terms with my new reality and I must accept it. I could not run that 5k Mud Run on June 1st.

But I could walk it.


I walked that 5k. I walked the entire thing. Well... I might have hurdle jumped over some hay, but I figured twenty-five yards wouldn't hurt me. To give you some background, my fastest 5k time was 26:09, and I had plans to drop that time even lower during my next race. This 5k took us over an hour to complete. By my old standards, that's ATROCIOUS! However, I cannot be held to my old standards at this moment. My standards must be redefined to meet me at where I am right now.

I had an amazing time at that 5k. We finished it. We got super muddy. We ruined our running shoes. AND I did not require a trip to the ER afterwords. Victory!!!!

When you cannot run...
walk 
... and be thankful for every blessing you find along the way.