My name is not Hester Prynne. I don't think Ms. Prynne would be placing a scarlet B on her chest and placing gold threads through it if the following happened to her.
This true event happened to me in the end of June. I'm changing the names, like they do in "Dragnet" to protect the innocent, but also I simply forgot the names of the parades of doctors and nurses I saw.
Regular readers know I had acute renal failure in both kidneys back in November 2010. So this past May I found myself with edema in my feet and legs that were so bad I could not walk. I could not put on shoes. My first thought was kidney failure. Off I went to the kidney doctor for a full work up. Everything seemed to be fine, kidney wise. I was told to cut out all salt from my diet, check with my gynecologist to make sure I wasn't retaining water, and given a script for Lasix, a water pill.
One month later, and my feet, and legs were still elephantine from edema. I waddled off to see the GP. She suggested I go to the hospital for tests. Off I went to the Catttery to board kitty for 3 days. I checked myself into the hospital. I had 14 tests given, from CAT scans to ultrasounds, to tests with Doppler. They checked heart, and for blood clots, and more kidney.
And all the tests were inconclusive.
Here is where it got interesting. I was in the hospital for approx 38 hours. After about 6 hours I noticed something. The nurses and doctors were treating me different. Not as kind, but like I was a child. Not just any child, but a slow child, a child with an IQ say of 60.
All of a sudden, I was no longer, Susan, who was here for cardio and kidney, I was here solely for Bipolar. The cardio and kidney were pushed aside to tertiary status. Every doctor, every doctor, every resident wanted to bring out the DSM and play shrink until a real shrink came in.
All our medical records had been added to a computer about two years back. Did the doctors, nurses, or residents see that my kidneys failed? No. The first thing the computer was spitting out was a hospitalization from 2003 where I was in the hospital for 5 weeks and received ECT. THAT is what they saw. And that is what they chose to address.An event 10 years ago which had no reference to what was happening to me at the moment, namely, to determine why my edema had been going on for seven weeks rendering it impossible for me to walk, or hold myself up to take a shower.
My mental health issues in the past had as much to do with my current prognosis as it did having my tonisils removed when I was four. Why weren't they dragging that fact out? It was just as salient to me.
No. I have been labeled Bipolar, and this label has bow been with me for more than half my life. It's my Scarlet B. People don't judge me for me, they judge me as someone who is Bipolar. Someone who is less than human. She should be shunned and locked away like they did a century ago. I saw it first hand with the doctors and nurses.
Never mind that I took nursing classes a few years ago when I though about going back to school for a nursing degree. What I saw made me mad. And broke my heart.
Sunday, August 11, 2013
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14 comments:
So sorry to hear Hester, but I know that story all too well. Nothing but a crazy person, in and out of hospitals, who will never get out. Been there, done that.
Sorry I don't have any words of wisdom, just know I hear you. Loud and clear.
INFURIATING (sp). Reading this sends chills up my spine, my horns come flying out, and steam begins to pour out of every single pour in my body.
I've been there.
Not on as much of a serious level as you have. But I've been there.
Recently. And I'm facing it again.
I had 3 separate tears in my left shoulder. A work injury. 2 negative MRI's. And a mental health history w/4 inpatient psych stays in 9 months that are well over 6 yrs old.
But to the ortho surgeon...I was not an ortho patient. I was a mentally ill patient. Whom he would not do surgery on bc there was NOTHING WRONG WITH ME.
And so I got a frozen shoulder, went to get a 2nd opinion and 6 months after the 'reinjury' injury (work comp related) I ended up with a frozen shoulder and a surgery that took a year to recover from AND now I'm facing another surgery.
Because, there is a mental health history.
That Scarlet B is a b*tch!
This enrages me -- love to you my brave friend.
I'm sorry you had that experience, but unfortunately it is all too common. I've had this problem many times, but mostly in the ER. Several years ago I kept going because I'd wake up in excruciating pain, sometimes with vomiting and didn't know why. I'd go to the ER because the pain was unbearable and once they say what meds I was on, they'd treat me like I was just some junkie hoping to get pain meds, even though I'd never had a history of substance abuse. I finally had to get aggressive and say "look, my mental health issues have nothing to do with why I'm here today and I'd like you to treat me as you would any other patient". I was finally diagnosed with gallstones and had my gallbladder removed. I don't think I would have found out what was wrong until it was much worse had I not spoken up.
I do hope you were finally able to get the medical attention you needed.
When I was 14 years old, after going through a series of extreme traumas, I had a ''nervous breakdown.'' The year was 1967.
Schizophrenia was the default diagnosis of that era. The prognosis was believed to be hopeless, and the standard treatment was to lock you up in an over-crowded human warehouse, drug you into a zombie-like state of compliance, and throw away the key.
I spent 2 of my teen years in the most notorious insane asylum in the state. When I asked the psychiatrist how soon I could go home, he told me that 97% of the people in that institution were never released, and that if you stayed there beyond 1 year, your chance of ever being released went down to less than 1%.
Seeing what must have been a look of shocked disbelief on my face, the shrink told me to go ask the other patients on my ward how long they had been there. I did, and the shortest answer I got was 8 years.
I ran away the first chance I got, was caught, brought back, and punished with solitary confinement and 4 point restraints. I ran away again, with the same result. The third time I ran, after I was caught I was put on the maximum security ward with all the criminally insane. My assigned bed was right next to a woman who had been a prostitute who went berserk one night and shot several men. She enjoyed telling me in detail how ''funny'' it had looked when their heads exploded...
I had never in my life harmed anyone, nor had I ever tried or threatened to harm anyone, myself included... and yet at age 14, my life was over.
There is no doubt in my mind that I would have spent many more years of my life there, if it weren't for a new psychiatrist who was hired to replace the one that was caught the third time he drugged me into a coma and raped me. The new, progressive-thinking doctor said he did not believe that I was schizophrenic/ He went to bat for me and thanks to him, I was set free at the age of 16, in Dec. 1969.
The notorious insane asylum where I spent 2 of my teen years was closed and torn down in the 1990s. Meanwhile, I had 3 children. I got my GED because my education had stopped in the middle of the 9th grade, when I was locked up. I did not study for my GED, but the woman who administered the test told me that my scores in every subject were the highest she had ever seen.
After my kids were grown I went to nursing school and was elected to class president, an honor I did not seek. I knew by the end of the first semester that I was not emotionally cut out to be a nurse... I feel other people's pain too much... but because I had been elected president of my class of 50+ nursing students, the majority of whom were fresh out of high school and young enough to be my own children, I felt like I could not let them down by dropping out. So I stuck it out to the very end, made straight A's in every subject, scored in the top 1% in the entire nation on the licensing exam, gave my graduation night speech, got my diploma, got my nurse's license, and... went home a wrote a novel, which was published in 2000, and recently re-released by the publisher as an ebook.
But I made the mistake of letting my doctor know about my old schizophrenia diagnosis when I was going through menopause and having trouble with my moods. By that time, Bipolar was the default diagnosis.... and medical records were being computerized.
Today, I am a 60-year-old great-grandmother and when I see a doctor for my hypothyroid or high blood pressure, I get exactly the same treatment you describe. Today my psych diagnosis is PTSD. Not schizo, not bipolar, just PTSD. But I still get treated the same by the vast majority of medical health professionals. I have a Mental Illness Label, and that is all they seem to see.
I like your blog. I love how real you are. I have started and stopped several blogs over the past few years. I stop because I just can't handle the rude ignorant haters that sooner or later come out of the woodwork.
Hugs,
Lynda
Thanks! Your blog is full of very useful and interesting information.
After many years fighting depression "in the darkness", I decided to start a blog as well and share my story as well as some science behind this disease which I came to understand better and better.
Please stop by when you get the chance, as I am still quite "lonely" in there...
http://theforestoflostsouls.wordpress.com
After many years fighting depression "in the darkness", I decided to start a blog as well and share my story as well as some science behind this disease which I came to understand better and better.
Please stop by when you get the chance, as I am still quite "lonely" in there...
http://theforestoflostsouls.wordpress.com
That is really awful, and it just gets me mad. Last year I was in the psych ER for overnight. I didn't get my blood pressure medicine for over 24 hours (I usually take it every 12 hours). It got so high they had to give me emergency medicine. But if you are a psych patient- they forget about the rest.
Dear Susan,
I can only imagine what you've been through.
In coping with depression, I’ve found that humor has been a vital tool. So I thought I would share this with you:
http://funnyebooks.com/The-Joy-Of-Depression.html
Best,
David
Susan - I want you to know that while you are in a down period, we are all thinking of you and love you.
Your blog has saved many lives and been a life raft for thousands. You have been a very important person within the mental health movement. I have followed you for many, many years. Your writing so accurately describes our experiences.
We love you. Thank you for being a hero within the movement. Thank you for giving us a relief more powerful than any synthetic prescription.
I'm so sorry this happened to you. When I went to a walk in clinic for a throat infection, the doc didn't even do a proper exam when she found I was on psych meds. My throat got so infected I was coughing up pus and began to swell to the point it was interfering with my breathing. I ended up missing 10 days of work, 5 of which I was unable to talk at all as I had lost my voice. If the doc had bothered to consider me as a person rather than just a psych label, this might not have happened. It absolutely breaks my heart and angers me that others have been put through similar situations.
Littlewolf
I really enjoyed reading this. I don't feel so alone knowing someone else goes through the same things I do or at least similar. My doctor didn't want to prescribe me pain meds for shingles because of my past and my psychological history.
Thanks
Susan... get well, soon!
This is exactly why I dismiss the thought of even going to the doctor for help with my depression. If only this could be a world where the medical staff helps a person's well being. I worked in medical admin for a while and the views of the nurses truly made me sick. Not all nurses are like this, but maby 1 in 1,000 I would actually trust. And what happens once I am diagnosed? More problems instead of actual treatment? No thanks I will just find a way to deal with my problems since nobody that can help me seems to care.
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