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.


  1. Amber this is Poppy Your experience was just horrible Unfortunately this goes on daily in hospitals around the US, Nanny had a similar situation in the ER and the ward Dr did not provide any info as to what the problem she only stated she was to be observed I had to explain what the problem was Stay strong We love you

  2. Glad you are okay. Hopefully, as time goes on, the medical community will learn more about Addison's, and your experiences will improve.

    1. I hope so too! With my "adventure" in November, the ER doc knew about Addison's, knew what I needed, and new to treat me immediately. This was SUCH a different experience.

      It is also one that I hope will never be repeated by me or anyone who lives with Adrenal Insufficiency. This experience completely terrified me, but sadly, many living with any type of Adrenal Insufficiency have very similar tales.

      Horrors like this can be completely avoidable IF people are willing to listen and learn.

  3. Amber ... after reading this experience I think that you MUST make a credit card sized document for yourself. You should include all of the medications (updated periodically), you emergency numbers, and the doctors to contact. Since you cannot communicate this is imperative!!! On the other side of the card you should put your typical symptoms and what you need when they are present. I don't know if the medical people will use that info, but at least you would have a written out procedure so they would KNOW that you are not a druggy or insane either. When you can't advocate for yourself you have to have some way of communicating your needs. This was so scary!! xoxo praying for you and for your mom too.

    1. You want to know the crazy thing? I was already in that habit. I ALWAYS carry a card on me with a list of all my medicine, the timings, and emergency phone numbers. It was in my purse, along with my life-saving shot. The EMT's and the rude nurse completely ignored it. They also ignored the fact that I was wearing a medical alert bracelet and that the doctor that called the ambulance told them I had Addison's Disease.

      Due to this experience, I now have an additional documentation explaining my disease attached to my cell phone with a huge medical alert sticker stating "STEROID DEPENDENT." If I ever end up in a situation like that again, I am going to chuck my phone at whoever is in range as hard as possible. Possibly knock some sense into them.

      For those working in the medical field, I understand I live with a rare disease. I do not expect you to be an expert in Adrenal Insufficiency. I do, however, expect you to follow the published protocol. And if you forgot the published protocol, it is permissible to listen to the patient living with the disease. There are too many stories of us being mistreated by ER's. That is unacceptable.

      (Three more stories can be found here: )

    2. I also have addisions and HATE to go to the ER as they think i'm from outer space. My best addy friend lived in AZ and they labeled her a drug seeker this past fall. She was 42 and just passed away 2 weeks ago as she was in crisis and her heart stopped. She was brain dead and the Dr.'s told her family there was no hope. They made the right decision and took her off life support. May she RiP, I miss her so much.

  4. Wow, your experiences seem really hectic which surprises me. I had always assumed that the lack of medical understanding I generally receive from doctors here was because I'm technically in a third world country with some first world facilities.

    I just generally want to cry with frustration when I'm dealing with doctors who are asking me (quite literally, this happened to me last week) what the symptoms of addison's are and what the crisis symptoms are.

    Luckily I haven't experienced any really serious crisis since diagnosis almost 9 years ago. My major problem seems to be coping with migraine headaches - solved by switching jobs - and a current allergic reaction that's left my body itchy, myself exhausted, and the medical community here scratching their heads.

    All the best!

    1. This was like the perfect storm... which could have been stopped at ANY MOMENT if ANY of the doctors would have just listened to me. I normally end up in the ER every few years for nasty vomiting, but this was the closest I have ever been to full out crisis. And it is an experience I do not ever want to repeat.

      And I can relate to wanting to cry with frustration. Have you seen this: I ordered one of these, and now if people ask I can just hand them printed documentation easily explaining the signs and symptoms of a crisis. Shipping will be a bit expensive to get it to your side of the ocean, BUT the resources are totally worth it (in my opinion).

      Also, both migraines AND an itchy rash could be due to not enough cortisol coverage. But the medical community might not know to consider that.

      May I include a link to your blog in my "external links" tab? I enjoy reading your posts :)

    2. I only found this reply now! I wish there was a notification sent to my many things to keep tabs on.

      I considered low cortisol having a hand in itchiness (but not a rash?) until after staying with my parents for a few days and they started itching too...

      Now I have some really strange symptoms and my dermatologist mumbled "pseudo-lymphoma" before shipping samples off to the path lab. No one seems to have a clue!

      I'm more than happy for you to include my blog link :) Sometimes I feel like my blog is my inner teenager just whining about life, but if you enjoy it then sure, please share. Maybe someone else will find value too!

    3. The knowledge kit is pretty cool. I have the medic alert tag but honestly, I've been in the ER explaining what adrenal glands do. Sometimes there are major language barriers and sometimes people think you're not sick because, well, you can't see nausea and headaches - even if they are debilitating.

      Mostly, I find people just don't listen. They're so busy already diagnosing the next patient that what you say is not important.

  5. Amber - we are glad you are alive and nothing worse happened! Thankful for you friend.

  6. OH my gosh, this makes me furious. We've been through this same exact picture so many times. The ER people are clueless, rude and horrible. Before I got involved in my mom's situation and helping her, she had what we call now an 'episode.' Seizures, black out, could not speak clearly. Somehow she too drove herself to the hospital. The jerks put her in the psych ward. From then on, I got involved with taking her to the ER when problems hit. But still after a dx in 2008, I still find that we have to yell, scream and cuss to get the horrible ER people to understand Addison's Disease. I feel your pain!!!!!

    1. May we continue to raise awareness so that horrific stories like mine and yours are completely eliminated.

    2. Isn't it time we did something about this? Lack of knowledge of this disease by med community has I am sure killed people. I went to er in full blown adrenal crisis where er Dr said I have no knowledge of Addison disease. I was seizing one after another. They were just standing there watching monitor go to a bp of 84/40. Thank God I had nadf number on my cell phone. She literally saved my life. What can we do? Write the white house and make it mandatory for all medical er staff to know this disease. Any suggestions.. there must be attorney general of health care. My name is Pana macconnell any ideas

    3. Hi Pana,

      I would just encourage you to remain active with NADF or AIU ( ) Both of those organizations can help direct you on ways to raise awareness. Also, feel free to share any of my blogs with friends and family.

      ~ Amber

  7. Amber-
    Medical traumas are traumas with a capital T. I have done work with my own therapist based on my own Addison's nightmares (all of my nightmares were prior to a dianosis). My therapeutic work has helped me to climb out of the fear hole. Look up EMDR on google; it is a great and fast treatment for trauma. you can look at to find an emdr therapist near you.
    With Care,

    1. EMDR sounds very interesting! And truth be told, I did seek out professional counseling again after this nightmare. It was unbelievably traumatic. It left me paralyzed with fear.

      Good news? Four months later, the vivid flashbacks have subsided. I can now retell the story without crying. I am all the more determined to speak up and speak openly about this rare disease. Stories like this SHOULD be eliminated, and they can be eliminated through continual education and awareness.

      Here's to a better future for us with Addison's! :)

  8. All i can say is OH MY GOD!!! this is hideous you poor thing :0( i swear i will fight with everything i have to get this injection pen much love to you.

  9. I have a ton of nurse friends. Do you mind if I share any of these stories? Not that I currently have any plans to, but...

    Oh, and I couldn't finish this one. I got to the part about having to find a spare nurse to get a sandwich and I was done (frustration not boredom).

    1. Brent, PLEASE share this story and any other ones from my blog with your nurse friends. When any of us start slipping towards that dreaded crisis, seconds are critical.

      A nurse who understands "Adrenal Insufficiency" and the fact that "Steroid Dependent" is not something you question could save a life. Awareness is critical. And awareness happens through dialog.

    2. Amber I am so sorry for your experience. unfortunately I have several of these stories of my own. 1st one was 3 days after my dx. I didn't know anything about this disease. And because my lungs are involved. they always treat my lungs with steroids. Well this time I was trying to tell them about being steroid dependent,they had NO IDEA how to treat me. at one point my heart rate dropped to below 50 BPM. the heart dr said well some runners have heart rates that low, I said do I look like a runner, I was (AM) over weight-- due to the heavy doses of prednisone they were giving me.. I like you was fading in & out, trying to tell them I NEEDED STEROIDS---the nurse actually TOLD my husband that they were NOT treating me for adrenal insufficiency, they were treating me for an asthma exacerbation-Like you can decide NOT to treat me for AI--that is like saying well we are NOT going to TREAT your diabetes. diabetes effects EVERYTHING & EVERYTHING EFFECTS YOUR DIABETES. You can't just NOT treat it pretend like you don't have it. You can TRY but until I get insulin my diabetes will rage out of control. SAME with AI/AD until you get the RIGHT amount of steroids symptoms will rage out of control. I ended up being there for 6 days & they were so desperate to get rid of me they dropped me from taking 40 mg solu-medrol to 30 mg cortef in 8 hrs time. I CRASHED BIG TIME. Thankfully there was a pulmonary dr there who could actually THINK. she ordered my increase in steroids back to 120 mg Cortef UNTIL I saw my endo.
      WE AVOID going to the ER until we can't avoid it any longer. I had pinch Sciatic Nerve Pain I hadn't slept in like 36-48 hrs & I couldn't stop crying it hurt so bad. We went to a different ER after our last experience with the last 1 last time. My husband told the er dr that I have chronic pain issues & have chronic pain medicine BUT it was NOT even coming close to touching the pain & having not slept & being in so much pain he was afraid it was going to cause a crisis. The ER dr said Pain will NOT CAUSE an adrenal crisis, Billy said are you kidding me that is like the #1 cause. They took an xray of my back B4 giving me any meds, tears were just rolling down my face as I lay there unable to help control my body in any way the nurses were like I am so sorry, didn't they give you a shot yet? I said no when we were done she went & got me my pain med shot & gave it to me. The ER dr came back in & apologized & said I am so sorry you are RIGHT. pain is THE #1 CAUSE. Because she is on pain management we can't do anything more for her but hope that helps. & sent us on our way.
      I will tell you about my colonoscopy ordeal next time....that is a good one, they damn near KILLED me...
      NEVER GO ALONE if at all possible cause when the darkness takes over you (WE) NEED an advocate.
      From each experience we have learned a valuable lesson for next time.
      I will share with you what we have learned. right now I NEED to go to sleep !! :)

    3. Thank you SO much for sharing your experiences. It shows how there does need to be more training with how to handle AI in the medical field. Sadly, Adrenal Insufficiency is NOT a condition that you can ignore to make things more convenient.

      And the prep for a colonoscopy is extremely dangerous for us. I know of several Adrenal Insufficiency patients who end up being admitted to the hospital as a pre-emptive move to be able to handle just the prep. If you try to do it on your own, without playing nicely with AI, yeah... that can easily kill you!

      Thank you again for sharing your experiences with me. Hopefully, through continuing raising awareness we can prevent more stories like this.

  10. Hi Amber , I was diagnosed 20 some years ago , after seeing a family Dr for years that didn't know his ass from a hole in the ground, he kept saying I had the flu, depression, heart problems, all in my head, . Ect.....well finally was so sick , I lost my eye sight. My mom walked me into his office, 2 nurses and this yahoo of a Dr took my blood pressure in both arms, each of them . Finally sending me to the er, next thing I remember, I'm on a floor, a kidney specialist came in , took one look at me and said, I am almost sure I know what's wrong here, let me send in an endocrinologist. The rest is 13 days in the hospital, the endocrinologist coming in every day to give me a shot of potassium, sodium, calcium ..... greatest Dr ever . No insurance at the time, never got a bill from him . The yahoo of a Dr that couldn't diagnosis a cold sent me a bill for 3500$. Never seen him again, even though he wanted to do follow ups with me. See my endocrinologist every 2 months. Best Dr, best person I've ever met.

    1. Oh gosh! I'm glad you were able to finally get diagnosed! It amazes me how often this disease is over looked. I'm very thankful you found a good doctor :)

  11. I'm so sorry that you had to go thru hell and back. I also have addisions and HATE IT! I met a 2 yr old lady who lived in AZ but was from where I live in WI and she flew in last summer as she has children here and we instantly hit it off. We became besties and I got a call 2 weeks ago from her daughter saying her Mom had a crisis and her heart stopped. She was brain dead within a matter of min as no one knew to give her the injection in her purse even though she was wearing her ID bracelet. They immediately called an ambulance and took her to the hospital and the Dr's told her family if she lives she will be brain dead. Two days later they did the right thing and took her off life support and she passed. I can't tell you how much I miss her. This just happened two weeks ago. May she RIP.

    1. I am so sorry for the loss :(

      This is why raising awareness is absolutely critical. We are NOT drug seekers. But we do require that emergency injection as soon as possible when we begin to crash.

      Let us work together to continue to raise awareness so that we can remain Clearly Alive.

  12. I cannot thank you enough for posting this. I have been through heck in the "best"ER in GA...last crisis I waited 8 hours going in and out of conciousness in the waiting room...after showing them a signed letter from my endo giving them instructions and saying I would die if not treated promptly. I was told that they had patients that were critical and I would have to wait..really??? My husband had to hold me up, and I have no memory of the ordeal until I woke up the next morning in ICU. This is one of many terrible ER experiences...passed out in the bathroom one time and when my mom pulled the emergency cord, no one ever came. She had to wait for me to come around to get me out of there. We told the nurse but still didn't get seen for a couple of hours. My first crisis after my diagnosis by stim test, the dr sent a psychiatrist to my hospital room to "evaluate me for an eating disorder because I had lost so much weight". They had my lab work and knew I had AD.
    I don't talk much on fb about AD because I don't want to be a complainer. Your post really touched me because it was so familiar and well written. it makes me mad the way we are treated. I have come so close to death, but the level of care never gets better: I shared your post, and I am surprised at how much response I received. Even my nurse friends have never heard of it. Thank you. You really touched me, and I think your post will make a difference.

    1. Thank you for your kind words! And thank you for sharing my post.

      I am so sorry about your awful experiences, but oh are they relatable :( May we continue to raise awareness so that the medical community can learn to recognize a crisis and treat immediately.

      Do you carry an emergency injection? A 100 mg solu-cortef act-o-vial?

      After this experience, I now take a very pro-active approach by training up family, friends, and coworkers to recognize the signs of an adrenal crash. I want them to inject me with solu-cortef so that I am not at the mercy of a medical system that may or may not understand the disease.

  13. How long can a person live with this disease with it being undiagnosed. Has anyone heard of any clin8cal trials where they r using stem cells to help cure or ease the symptoms of this disease? Why do people have cough or asthma with this disease or foot droop

  14. Thanks to everyone for posting. I just endured my second ER nightmare (this time, the hospital of my new endo, who they never even bothered to page), and was trying to explain to my husband the PTSD I am experiencing now that I am home. When the very people you are depending on to save your life refuse to listen, refuse to follow protocol, refuse to learn, refuse to believe you, and—worst of all—refuse to CARE, it’s positively unnerving. And I live in CHICAGO, for crying out loud! There’s just no excuse. Anyone ever think about a lawsuit?

    1. Renee,

      I am so so so sorry you have experienced ER nightmares as well. They definitely cause PTSD. I have sought professional counseling after particularly bad episodes specifically to help me cope with PTSD due to medical trauma. I highly recommend it.

      I have considered a lawsuit, but in the end I did not have enough energy / strength to pursue one. I decided to write instead. My hope is that the additional awareness and continual education will reduce the frequency of these stories.

      ~ Amber


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