ER Visit and Medical Trauma

There is nothing like an ER visit to add stress and medical trauma to your life. 

After 3 days of using a CPAP machine for the first time, I woke up with a lot of facial flushing.  I didn't think much of it and managed it with benadryl until the evening.

Chatting with a friend, I casually sent her a text with my photo saying I felt a bit swollen.  Her response "Oh my! No offense, but you look very sick."  was a bit of a wake-up call.

With my swollen face, blood pressure going up quickly and my vision getting blurry I knew I had no choice but to head to the ER.   

I'm privileged to go to our little mountain town ER where they are kind and well-intentioned yet...

• there was no sense of urgency 
• when I got upset that the nurse said I wouldn't need an IV and when I tried to tell her I needed it because I can crash quickly,  I was told to calm down.
• the nurse questioned me about saying I had anaphylaxis in the ER asking if I had been intubated...um, no but I went into shock.  Is that enough?
• they attributed my high blood pressure to anxiety and being upset
• the doctor assured me my lungs sounded fine 
• the doctor assured me a bp of 178/113 was something I could live with for a while (my normal is around 110/80)
• the doctor asked what was bothering me the most - I tried to explain it was the constellation of symptoms that lead to my blood pressure crashing, not one symptom but he didn't seem to understand 
• they left me in a closed room without the call button before giving me any meds
• I was too sick and dizzy to get off the hospital bed to open the door to get help
• while I was getting worse, it took them 20 minutes to return with meds because they were having problems finding my record in the EMR

It wasn't that they didn't want to help, they were just so incredibly unaware and incapable of providing what I needed at the moment.  

But, whether it was intentional or not, it put my life at risk and it left me to deal with the medical trauma of not being heard, validated, and taken care of.

My MCAS doctor had told me they'd know how to treat my anaphylaxis in the ER so no need for an ER protocol letter.  This may be true but only if they recognize and acknowledge what our anaphylaxis looks like. 

I'm slowly recovering from the anaphylaxis and ongoing flare.  Next week, I'll meet with my mcas doctor to come up with an ER protocol letter that will hopefully help the ER understand, identify, and appropriately treat my anaphylaxis. 

Yet, I'm left with the hardest task of all, overcoming the medical trauma - the fear, the helplessness, and the feeling of abandonment. 

Our care, our health, and our lives rely on us going back to the very system that caused us trauma. 

Will I hesitate to go to the ER the next time?   Of course, who wouldn't?  That's something I need to work through before the next time I need to go there. 

If you too deal with medical trauma, you are not alone ❤️

Medical trauma is real and doesn't go away on its own.  

It can cause us to fear and question how we will be treated.  It can cause us to avoid the very care we need. 

The system is broken, especially for those of us with rare diseases.   Doctors, ERs, and the whole system need to change to help us without causing us medical trauma.