Saturday, January 24, 2015

Sick, getting worse, and not receiving medical care due to "somatic" mental illness accusation: Caryn Marie's Story

Final update: Caryn is now diagnosed with POTS, is on meds that are working to help keep her stable, has a guide dog to help her, support from her family now, and even has been able to hold a job in a caring environment. This is a far cry from the story below. I'm so glad that myself and another lady in the community got in touch with her and were able to tell her about POTS. It was a fight at first but she has won now! Right on. However, it is too bad that doctors often initially treat people like Caryn with contempt like this, therefore putting them through unnecessary trauma and a fight to be recognized. Many of us get through to the other side, but we hope one day things will change. 

This was a very serious matter, and Caryn went through hell in this situation. It was very clear to me, if it isn't to you after reading this and/or watching Caryn's video, that she is telling the truth and she is genuinely unwell with something that is likely complex, unusual or rare, and indeed serious. 

Doctors pull the abusive move of labelling someone with a condition like somatoform, when they can't find anything wrong with their patient, because they don't think outside the box. They aren't pinpointing the problem enough to order the right tests, but they don't want to admit that they're wrong, and they also want to save money. So, they pin the blame back on the patient. This is abusive and is patient mistreatment. It's a human right violation. It needs to stop.

*Update on Caryn's situation* (earlier March, a more promising update.)

Caryn's condition became so bad that she was admitted to hospital. She became wheelchair bound and could barely stand upright without passing out. While in hospital, she remained in online communication with me, her friends and her family, through her phone. At this point I told Caryn that based on her symptoms, I felt, as did another experienced peer Susanne Bird, that she had severe POTS - a form of dysautonomia. I told her to make sure she was getting her electrolytes in, such as salt and potassium. She told me she was still being accused of somotaform disorder, which is absurd because she is now clearly ill. 

Then, believe it or not, she was committed to the psych ward. Caryn stuck to her guns, continuing to advocate for herself and looking into her symptoms. Caryn then told me she was hyper mobile and sent me some pictures of her bending her fingers back.We realized there was a pattern for sure. It became very clear to me that Caryn likely has the condition I have, Ehlers-danlos, which causes POTS/dysautonomia and ALL her other symptoms. People with EDS, myself included, are often very poorly treated, and even abused, in the medical system especially before diagnosis. This is unsafe because the complications of EDS can be dangerous and sometimes even deadly. I myself had to fight to obtain a safe-grounding diagnosis of EDS and I have my own story on that one.

EDS symptoms are systemic, but caused by the unusual source of the weak connective tissue. They can be everything from joint pain, early arthritis and injury, skin fragility to internal symptoms like POTS and poor infection healing. More info *hereUntil the condition is identified for what it is, the nature of the symptoms are poorly understood, and wrong tests are performed. When those tests don't turn up any answers, doctors tend to throw psych labels at the patient, instead of looking deeper. More EDS awareness is badly needed. 

So, Caryn began to vocalize some of this to doctors. Initially, they gave her a tilt table test for POTS and it was positive, but they tried to tell her it was severe anxiety from somatoform. However, she was eventually seen by a competent Neurologist who correctly diagnosed her with POTS, and agreed to refer her to a well known Boston EDS specialist. I told Caryn about Chiari Malformation, which is when the neck is too weak to support the head and it begins slipping. As it gets worse and can cause very severe dyautonomia and POTS, causing one to pass out when trying to stand upright. 

The relieving news here is that Caryn is no longer committed to the psych ward for the bogus "somatoform" and she is home safe, with her family supporting her, waiting to follow up with actually competent Drs. She may not be totally out of the clear yet though, so lets continue to support her. Caryn is considering obtaining some form of justice for the way she was treated these past few years, while getting sicker. Like many of us, she has been traumatized by this ordeal. Imagine being very sick, and frightened, and also having to endure trauma at the hands of abusive medicals. It has been a nightmare for Caryin, and it will take a while for her to heal from all this. 
The above photograph shows a young woman who has fallen ill, not someone who has convinced themselves due to a supposed mental disorder. She looks very pale, sick and drained. You can see that she has very soft skin. Below, Caryn demonstrates her very bendy joints.

Sick, getting worse, and not receiving medical care due to "somatic" mental illness accusation: Caryn Marie's Story:

So about two years ago I constanty got sick. I got chronic sinus infections and sick. I knew anxiety ran in my family but so did alot of other health problems. Last january I had been on antibiotics about 6xs within the previous year and and that's when all my symptoms started getting bad. I was starting to get tired all the time.

I wasn't sleeping through the night. I was choking on my breath during my sleep and waking up with constant nosebleeds. My body was just doing something on its own. I got stressed, but I would always find a way to manage it. At first I thought it was just stress, so I remember telling my boyfriend at the time I wanted to start working out...but all I remember is working out and feeling this weird shock that I never felt in my body. I thought maybe my body just wasnt ready to work out that hard, so I just walked and then called it an early workout. 

I then started to bloat really bad, and I mean really bad. I constantly had stomach pains, but heres the weird thing... my whole left side would swell up only. hat was also the same side that my nose bleeds and pain was on. i had no feeling on that side of my body and I was still constantly feeling these pains. It was like it was running through the whole left side of my body. 

One day, I was at work (and I was a waitress and bartender) and I started getting izzy spells, but I always worked through it. I always pushed myself because I was living on my own and thought it was just stress still. So after many days of getting really sick and many dizzy spells, I had something pretty traumautic happen. I felt like i was having a stroke or something. All i remember was gettin dizzy, hot, nauseous, and this huge flash of red just covered my eyes. I was freaking out and the rest of the night, I was dizzy and my vision was blurry. 

As soon as my shift ended, my sister picked me up and I said take me to the hospital. She took me in and they said I was okay and to follow up with a doctor after that. So I went to a doctor and they suggested it was just stress. I told him everything I was doing that I normally do, and he said "sometimes you just need the medicine to help push you a little." I was upset. I knew what my body felt like. Who was he to tell me that I was feeling something different and this was all stressed related? 

So as time went on, my breathing got worse, so did my anxiety, these so called "panick attacks" I kept getting constantly were affecting me all the time, day and night. I was so depressed. I had been to a gastro doctor and he said that my colon was lazy and that i just needed to start working out again. So as that is happening, my state was getting worse. 

I was so scared, I went to the hospital again and my anxiety was out of control at this point. I was constantly scared and my body kept reacting in weird ways. i had quit going out and drinking at this point because i wanted to help my health as much as i can. I was still working and I remember getting these stings where I would loose feeling in my fingers and head and it made me really nervous. 

What the hell is going on? I really cant even explain what was happening. I had gone to the emergency room about 3x at this point. It literally felt like my body was starting to give up on me. I stopped working at this point (it's about august now) I couldnt control my crying. and this was horrible. It almost felt as though i kept losing cirulation throughout my body and everything was only flowing on my left side (hence why I was getting constant nose bleeds and swelling on that side.) 

So I was at my dads one night crying and scared, and I made him take me in. I was so upset the doctor wouldn't do anything for me. I made the mistake of saying " I don't want to live anymore" and that was the first time I was admitted to the psych unit. I was hopeless and I was so scared. Also had an mri scheduled that I had to reschedule at a later time. They put me on medicine and i was miserable. 

I was still getting sick and my body kept getting the same sensations. no one believed me and didn't take me seriously because I was a "psych" patient. After that it went down hill. Friends stopped talking to me, I literally got really depressed, I had a hard time moving around. Falling asleep scared me. and people just kept treating me as a psych patient. Now my family doesnt believe me and its so hard for me to catch my breath. My nostrils are completely closed off. 

No one believes me. They diagnosed me with somatization disorder and everyone has given up on me. I feel so hopeless now. Every time I go to the hospital or doctor they just tell me I need psychiatric treatment. I am suffering so bad. My gums have swollen up so bad. My sinuses are completely closed off. I can barely breathe through my mouth anymore and everyone thinks I'm crazy. I got super depressed because I'm still in all the pain. This gets worse and worse and no one will take me seriously!

I'm lost, and I feel like i'm the only one fighting for my life. Everyone thinks this is something where I can snap my fingers and get over it.. but it's not. 

This is the worst feeling to go through. I would never wish it up anyone. The thing I wish people would realize is that when something is physically wrong, it effects other parts of the body. No one believed me for so long I feel like it was just a chain reaction. There's no way I could make these symptoms up nor could these be exaggerated feelings. It's been rough and I'm literally on my last limb, it feels like. It's been a year of this and my body's done.

-Caryn Marie

Wednesday, January 21, 2015

Where's Carly? still heard nothing ...

It's been about 6 weeks since Carly Fleischmanns' dad finally posted a brief message explaining why she's been silent for nearly a year. Since then, we've heard nothing, nada, all's quiet. If anyone has heard anything more, or has anything to share on this, please do bring it to my attention.Tbh I'm starting to worry and sorry to sound paranoid, but, what the hell?? 

Personally, before this happened, I was worried that Carly would be increasingly seen as a threat by some in power, because even as a budding kid, she demonstrated that Au folk capability to see it and tell it like it is, no BS, eloquently and brilliantly too. I predicted that she'd grow fast, to talk about global issues and reform; big time. I could see the next great like Helen Keller was. Plus, even more dangerous, everybody was "hailing" her so she was in an extraordinary position where many would listen. She had the words of a good aspie minus all the "aaah just a crazy person"/bystander affect/prejudice that weighs us down.

She had Autism Speaks f****** just swarming around her like moths to her flame, pouncing on and interfering with her miraculous being, pretending to staunchly support her etc.. and I was thinking "get off her you manipulative gremlins, she needs real Au community" Her well meaning but NT parents were hooped, and ultimately in control of Carly's affairs.

In the back of my mind I had this sense of doom that something bad was gonna happen, and then she fell silent. Well, here it is. I hope the hell 2 things, A) that she recovers her ability to speak again, which may only happen IF whatever the hell happened in the first place becomes identified for what it is, and is somehow undone (and Carly could, feasibly, discover and channel it back via her own instincts, it's hard to say and harder to explain) and B) If she does recover (and if autism speaks swoops in with superficial sympathy that'll really piss me off) I hope she is able to speak out and get her boundaries up, and become involved with those who actually do support her growth and her powers.

It reminds me of the superficial confidante of a young royal who is secretly contracted to silence/trap/overtake/assassinate them in some way. Creepy, suspicious, there's a pit in my stomach over it all @ #wherescarly

-Rose Whitson-Guedes (Girl Outside)

Saturday, January 10, 2015

Carly's voice has been silenced - where is the outrage? - by Tanja Guven

It has recently been brought to my attention that a non-verbal autistic teen, Carly Fleischmann, 17 years old and unable to speak due to oral-motor apraxia, who learned how to communicate via typing at the age of ten years old, was from April until recently silenced by the actions of her parents, who saw fit to subject her to ECT for OCD, surely while knowing the risks of such a procedure.

Whether Carly’s permission was asked is unclear, but the procedure was done in any case. It is unclear whether Carly consented, and if so, if she consented with full knowledge of what was to be done to her. In many cases, declarative and procedural memory are lost, with devastating consequences.

In this case, Carly unlearned how to speak, and only recently issued a distress signal somewhere from inside her battered brain, pleading for help and expressing her confusion and pain. Within the timeline on Carly’s Facebook page was a post by her father, in close proximity to Carly, and many comments sending the prayers and good wishes from various readers of the page, with one strikingly absent among them: outrage.

Tacit among them was acceptance of what had been done to her as normal, as if it had simply been an act of God, or more precisely, the prudent act of loving parents, despite the fact that it had nearly severed the only links with the outside world that she had ever had.

Whether Carly was lied to, and perhaps told that the treatment would allow her to speak orally, as she wanted, is unknown, as is the possibility of any consent having been obtained at all to undergo such a procedure. In this, the vast gulf of separation between the rights and the medical model of disability becomes horribly apparent.

Autism Speaks demonstrates this perfectly, by exploiting the fears and frustrations of the parents, and eliciting donations that should go to adaptively easing the condition, which claim to go towards a cure, and which actually go towards its own profits, periodically releasing foolhardy and potentially injurious treatments for their children, such as the therapeutic internal use of bleach on the gut, which directly incites violence in a polite fashion, and feeding hatred of their children.

Who can love that which is described as cancer? Who can empathize with or relate to or co-exist with cancer? To attempt to extricate someone from their autism is as productive as trying to remove the stone from an onion, for that is intrinsic to whom they are and always have been. It is a brotherhood and sisterhood of the inside of the skull.

That this is accepted, and never questioned, is disturbing. It is disturbing that a person with an inner life should be kept caged and systematically battered in a way that makes his or her most personally distressing deficits worse, and that this has not been labeled as wrong or abnormal in itself.

It is time that endless attention was turned away from the inherent qualities of a person, and more was turned towards the logistical and legal circumstances which shape that person’s life around them, especially to those creating them, and for whom the conflict of interest is strongest.

-Tanja Guven