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Brain on Fire!

APD-Brain-on-fire_optWell this will be an interesting post, I’m sure. 🙂

In 2008, with just a bit of luck, I had an MRI which showed I was suffering from Bacterial Encephalitis.  Well, the MRI showed brain swelling and tests confirmed the diagnosis.  After a course of antibiotics, rest, etc. I was declared healthy and sent home.  YEAH!  It was a tough time for me, I was separated from my Ex, had an eight year old and was very scared at what the outcome might be.  Alas, all for naught.

So, fast forward — 2009 receive a Traumatic Brain Injury at the hands of the Ex and the bleeding on the brain that caused has further set me back, not to mention the increased nerve damage to my face, neck injury and residual side effects all this entails.  I’m a mess.  However, I came across a book not too long ago by Susannah Cahalan and her experience with Encephalitis.  Her book was great.  It recorded her time in the throws of some unknown disease through a hospital stay and the final diagnosis which has gone on to help countless others in their battles with this crazy disease.

9781451621372_custom-8472ac7519cd7bd76f6a81b979975ea9b0d66b83-s6-c10I’m amazed at her willingness to expose herself so fully to the world and show her vulnerabilities as she shares her experience with others, many of whom would use her experience to demand tests for the same problem and get results.  Her neurologist, who is one of the top in his field, even after she had a diagnosis in hand, had never even heard of it and had essentially written her off as a detoxing drunk.

This book proved to me, once again, that DOCTORS ARE HUMAN, TOO!!!  They make mistakes.  They don’t know everything.  Something I had been saying for years; but no one was listening.  I sometimes wonder if the overload of patients, under staffing of  hospitals, insurance companies pushing people out of long hospital stays and the lack of good doctors and nurses is part of the problem.   I’ve seen too much in my nearly 45 years; but it is getting far worse.

I remember when my 8 year old sister was suffering terrible stomach cramps for over a month, crying in agony and after going to the hospital and pediatrician, the doctor told my parents that she had a mental problem because she was still sleeping with a teddy bear and needed to see a shrink.  My mother, God Bless her, told the doctor he was an a$$, took her records, x-rays and such to Westchester Medical (over an hour away from our  home).  She presented the history to the doctor THAT NIGHT, who took one look at the x-rays and said, “Ma’am, your daughter has an  intestinal blockage and if we don’t get this fixed, she could die!!!”  Mom’s know when their kids are truly sick and not faking illness.

Fast forward 3 years and this same doctor (yeah, I know — what was she thinking; but when in a small town) told her that my ear infections were all in my head, a plea on my part for attention!!!  Okay, jerk; but guess what, I STILL GET THEM!!!!  OMG, like I need attention now!!!  Turns out, due to my allergy/sinus issues, the infections keep draining into my ears and cause them to hurt.  Yeah, he should go back to medical school; but hey, he doesn’t care — he’s getting paid, right!

These instances were the beginning of my long love/hate relationship with doctors over the last 40 years.  I’ve seen doctors that care and ones who have prescribed me with medicines I’m allergic to 3 minutes after I tell them I’m allergic.  I’ve seen doctors who are more concerned about entering data into a computer than caring for me as a person.  I’ve been treated like a number and not a human being on countless ER and VA trips.  It hurts.  It’s wrong and no one can do a thing about it.

Susannah at least is getting the word out on this particular problem; but it is just one in a million we’ve got in this country alone.  Still, to this day, I feel like my brain IS on fire due to my mountain of injuries and pain.  I want to drill a hole in my head to relieve the pressure.  I don’t.  I know that is foolish; but it doesn’t make it any easier.





About irishgoddess1337

Retired Marine, Christian who survived Domestic Violence, living with Lupus, PTSD, Fibromyalgia, Migraine, TMJ, Trigeminal Neuralgia, Sleep Apnea and living my life for Jesus! My son is a Senior this year!! YIKES! I love music! My son plays drums in his High School Marching Band & Percussion group. We live with three fur babies -- Tippy the Corgi and Honi & Teddy the Poms. I scrapbook, stamp and make rag dolls for fun! I've recently started acrylic painting and making jewelry. Life is good!

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