Posts Tagged ‘neglect’

I’ve been struggling quite a bit lately after having been in hospital as the result of doctor neglect and incompetence. I thought I would die and since I ended up having sepsis, the reality of death was certainly possible.

A friend just called, one who I saw just hours ago. She was speaking to some friends about the concept of a healing room, and relayed what her room is like.

She invited me into her room, for healing. Her room sounded incredible. There was a part where she described a rock ledge when you lay on it molds to your body and the sun shines at different points. When she was describing hers, some of her imagery was similar to what my healing room would be like.

Then she asked what mine would be like. This is it:

My healing room would be entering into a lush green forest with a waterfall that splashes all in the middle and is the most brilliant blue.

The room has a door where once you enter, all negative energy is repelled as like the Patronus curse in Harry Potter.

The room cannot be found on a globe and can only be felt by a person. Of course my room has angels and my friends who are half angel and half human. The room has the ability to have others in it or just for me because sometimes healing is a solo mission.

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See that one over there?

The one walking with a limp…  no one actually cares.

Wearing clothes that are hand-me-downs,

because face it, no one like her ever wears ball gowns.

She has always had trouble fitting in.

Her siblings, they just grin.

They watch her get hit, or shoved or threatened.

Standing by, they have their lesson:

“As long as we set her up,

We won’t get beat down.

As long as she gets the brunt.

Only she wears the frown.”

The little girl keeps trying to tell people about horrors abound.

No one believes her unless they witness it for themselves.

Or perhaps in a gutless act of mercy, just protecting oneself.

 

These kids grew up in the same town,

Two look up while one looks down.

One goes home at night, unable to sleep.

Yet, all who are able to help, do not… and the girl, she just weeps.

Locked behind doors because her eyes won’t shut.

Praying to the sky that this isn’t a permanent rut.

As the thought of kidnappings or murders in the night leave her frozen.

She wonders each time, “why was I chosen?”

Chosen to live a life full of love, devoid of chaos.

She pours her heart into living each day.

As it gets harder and harder to live, she sways.

Always on the brink between life and death.

Emotions long gone, she’s told she’s insane.

In a journal entry from age nine, she acknowledges the pain.

In a vain attempt to let others in,

She climbs further and further into the hole, hoping someday she’ll win.

 

I thought I could do it. I thought it wouldn’t matter since I’ve spent plenty of time alone in the past. The problem or difference is that usually, I find ways to numb myself to the pain of being alone. This time, I haven’t done that. I become depressed and in a state of despair when alone. I’m just speculating here that the reason I do can be attributed to a long history of abuse and neglect. Constantly on my mind is the fact that my biological family is not present for me in any form. Tonight seems exceptionally hard. Instead of inducing harm or numbing myself tonight, I think it’s time I convey my message in words.

According to ongoing recent research, people who have a history of severe attachment problems tend not to do well in life. I’m sick of my disconnect from the world. I want to immerse into the world, not hide from it. A pit of despair formed in me throughout the day. A telltale sign that I’m starting to feel unwell is when I seek out triggering videos. For the past few weeks (or months?), I’ve been watching these sorts of videos or clips online.

Tonight, I needed to cry, and I’m watching something that’s fulfilling that need well. Yet, it began to hit home in how relevant it was to my current situation and I began to think. My thoughts just take off to the moon once prompted. I was reminded of how I don’t have a family, how I have no relationship with even the one person I want to-my brother. He’s sick, physically sick. It’s been an emotional roller coaster for over 20 years for everyone. He believes I’m sick, except that it’s serious mental illness.

The places I’ve been in treat people like animals. After a while people will embody the aspect that they are treated as. I’ve acted like an animal in the past. My brother has no wish to see that I am no longer that person. I feel a bit crazy tonight, but hey, I’m starting to think that’s actually something many people experience. It’s only when it becomes chronic that maybe it can have an attribution to mental illness. I’m not mental, I’m in the process of repairing my insane past. It doesn’t have to define me. My history will not defeat me tonight.

 

The larynx is responsible for the voice which is located in a region most people would consider the throat. So I guess technically, this wasn’t my throat, yet this was the first word that popped into my mind tonight as I was speaking with my Somatic Experiencing Therapist. She asked for sensations that arose when I made contact with my throat and instead of sensations, I gave her words. After all, that was the first thing that came into my mind.

Tonight however, my “throat” and me were two separate entities for lack of a more accurate depiction. My throat spoke to me and I spoke back.

Lately, I’ve been having problems with my esophageal spasms (Jackhammer Esophageal type). If I didn’t already have an eating disorder, this would be a great way to propagate one. I can see now that it stems back from long before I was able to form memories. for this time period, all I have to reference are medical charts from my home for the first two months of life, A.K.A., the Neonatal Intensive Care Unit at New York Hospital.

I read in the charts that there were times when at the doctor’s direction, feedings were discontinued for me, sometimes for more than one day.

This leads me to believe that this is where I learned a pattern, namely the pattern of defeat and then to reset/rebound/get back to baseline again. I was going to be all corny and write, “get back on my feet, no pun intended”, but then there would be a pun, and oh look I did that anyway.

It’s a matter of resilience and what people do when confronted with a difficult situation. And it’s true, you never really know how you’ll react or cope until something comes your way. For me, the pattern seems to be that even at the worst of times, when negative circumstances arise, I tend to have a decent ability to sit in my shit, and then come out from it stronger in the end.

For an excellent understanding of resilience, if you enjoy TED talks, check out Brene Brown and resiliency. I don’t know how to make the fancy accents on the 2nd “e” in her name, but I’m sure it’ll pop up… or click here for easy access:

However, this is not a pattern I want to continue. I don’t like that a negative circumstance is what I need to live positively and more strongly if you will. I want to have a fighting spirit without the constant reminders in the form of some traumatic or challenging situation.

Back to the topic at hand-conversations with my throat. I had my hand placed on my throat during this conversation:

Throat (imagine a person slumped over in a chair, this is how my throat is acting, not literally, just defeated): Why should I work now? You’ve neglected me for so long.

Me: Yeah, but it was hard-wired for me to do so from a very young age. No one took care of me, they ignored me. It became a pattern, habitual

Throat: Yeah, but what about now, now you have control.

Me: I know I do, I can’t describe it better than I was hardwired to not feed myself.

Somatic therapist interjects: I prefer to think of it as “conditioned”. You were conditioned to do this, not something that can’t be changed.

Me: Oh yeah, sorry, forgot that word. Hard when learning a new language to remember words in other languages (I’m learning Danish). Then I relayed this information to my throat.

Throat: (scoffs)

Me: I’m not really sure what more to tell it, because it has a point.

Therapist: try just sensing it.

Me: Ok.

Throat: You know, you abused me, you treated me badly.

Me: What? I may have an eating disorder, but I never have purged. How could I have treated you badly?

Throat: You may have not purged, but c’mon, I’m connected to your whole body.

Therapist: You know your throat has a point, do you agree?

Me: Oh yeah, absolutely (not sarcasm).

Therapist: So can you sense anything changing in your throat?

Me: I reached for my drink to test.

Therapist: No I want you to just feel it.

Me: A sudden burst of energy-Upon doing this, my feet began bouncing up and down nonstop for minutes, I probably would have run a mile if I were standing considering the speed and duration of my movement.

(Many minutes later)

Throat: I need (therapist). She’s got skills.

Therapist (chuckles): Lots of people have skills. You just need a person.

Me: Yeah, but my throat knows that you can help it.

Therapist: How does it know that?

Me: Because you helped other parts in the past and my throat was witness to that. Like remember the time we had a session and you said normally you don’t go that fast with your clients but my body was in crisis? First, you put your hands on my kidneys and then you moved to my left side and said there was a lot of heat in my stomach region. Then, it was kind of like a volcano after some time and began spewing out (the negative energy). Then you moved to my neck and the upper part of my chest, but you didn’t get to my throat that day. My throat felt neglected, forgotten.

My throat became more neutral, which was better than the initial distant teenager feeling it first emoted. Hoping that I can learn to listen to my body and we can work together more often than constantly fight with one another (physical symptoms manifesting as a way to express that something’s not ok).

All who would win joy, must share it; happiness was born a twin.  ~Lord Byron

I’ve always thought I was a twin; every time I mentioned it growing up, my parents would act as though I was being ridiculous and scoff or brush the thought aside. Fortunately, I landed in eating disorder treatment two and a half months ago. The outpatient setting and transitional living home I reside in is validating, more so than other places I’ve journeyed to in the past. It was at this place that I was referred to a somatic therapist about one month ago.

To think, it’s been only one month I’ve been seeing this amazing human being is beyond me. I had yet to cry in front of her though I have two session per week with her. Then, last Friday happened, and last Friday was quite an experience.

Quick note about somatic therapy: it’s when a therapist deals with bodily responses to trauma, and yes, we all hold trauma of some sort, it doesn’t have to be abuse, neglect or torture. The somatic therapist I see incorporates touch as she holds a massage therapist license as well.

The first session with her she didn’t touch me at all, she sensed energetically that my system was not ready to handle it. Gradually, she integrated touch, almost always starting with my kidneys/adrenals.

Last Friday, I mentioned to her that my eating disorder therapist believes I hold my trauma in my throat. I’ve been having many throat issues and have had to resort to a soft diet. We ended up on the topic of babies and suddenly, for the first time in her office, I realized I had to close my eyes. I hadn’t yet closed them in her presence because I never know what will happen if my eyes are closed, my safety feels compromised.

However I closed my eyes and put my hood on. Up to that point, I hadn’t worn a sweatshirt on the table. It is ideal for her to have closest access (without touching) to my skin. She asks me to take it off usually, and I obediently do, but not Friday thankfully. My hoodie is a security blanket and extremely soft.

Upon closing my eyes, I saw a baby. Have you ever gone to a museum where they outline the stages of a baby in-utero and you see a small object about the size of an egg surrounded by amniotic fluid? That’s what I saw. Then I thought to myself, “I thought I was a twin” and instantly I saw two of these fetuses, mirror image of one another.

As though I were looking through a kaleidoscope, the image in my mind remained, along with a slight beating or pulsation as though it was to a heartbeat or someone’s breathing (like the carrier of the babies). I saw the color yellow flood through me and then miniature babies, maybe 8 or 10 were in a kaleidoscope image circulating about in a circle, in various positions. 

The image then returned to the two babies, facing one another. One baby detached from the circle and began drifting off. I began to feel an overwhelming sadness. When the therapist asked me what was going on, I explained to her that the other baby was leaving, saying to me, “I’ll be waiting for you.” It wasn’t in a creepy way, just sincere and matter-of-factually.

Suddenly, there was a bright light and I was surrounded by about four sets of arms over me, and a mask on my face. At this point, the therapist had hand placement; one on my lower neck and one on my chest. My breathing was rapid. I told her I barely felt the presence of her hand on my chest and she began a sort of kneading motion with her knuckles, not harder so much as to bring awareness to my body.

I felt an extreme pressure on my chest, not from her and not from anxiety. It was the sort of pressure one would use to stimulate a baby upon birth (as an EMT, I am aware of this tactic). My breathing continued to be erratic, my left hand was tapping up and down on the table. She took her hand off my back and placed in beneath my left hand. I made no motion towards it. She asked me what I wanted to do with her hand. I said, “instinctively, I want to grasp it”. She asked why I didn’t, to which I replied, “because then that would mean I’m in this world. She said, “You are in this world.” I, as the baby speaking, said, “I made the wrong decision, I want to be with the other baby. She said, repeatedly, “You’re here, you chose to be here. I continued to reply that I didn’t want to be, I made the wrong decision. She asked me to decide if I was ready to have this happen, to be present, to let the other baby go. I wasn’t. Usually, she doesn’t push me into any sort of decisions, this day she did a bit it seemed.

We ended at the point of conflict; my choosing to be in this world though I don’t want to be. I badly want to be with the other baby. Not wanting me to think too much about it, she said to not rationalize what had just happened. I haven’t too much though I’ve thought about it most of the days since. Seeing her today, she said, “Happy 5 days since your birthday”.

A few sessions ago, she mentioned that my nervous system is like an infant’s and to my therapist at the center, she said it’s like a newborn’s. Even if my age progresses, if my emotions are never dealt with accordingly, age will remain inconsistent to my developmental state.

I saw my psychiatrist today, the first person to get intimate with my case, “a little too much” as she said in a joking manner. She said I have to consider my situation as though I’m an orphan. Even though I’ve thought that constantly, and said to a few people, this was the first time someone else brought this to my attention.She spent a lot of time with me, much appreciated.

Today, I arrived slightly late to session because my psychiatry appointment today was delayed, resulting in my delay in arriving to the somatic therapist’s office. She didn’t want to use the table today (where touch often takes place). She asked me to sit with being alone, to feel what it feels like to be alone. An overwhelming emotion flooded my body and a steel gate went down, and I went blank and unable to talk.

This has happened before, not in her presence though. She came over to me and put her hand on me. Later on, she explained to me that my cells froze and that was validating because then it was as if someone else was validating my experience, someone so gifted and knowledgeable and attuned to others’ bodies. Someone who won’t run away and enjoys a “complex” case.

Even though my individual therapist can’t handle me too much right now and is struggling through her own stuff, I’m very grateful she referred me to the somatic therapist. My experiences are finally feeling more real as opposed to surreal, and at least one other human being on this earth cares about me.

Someone cares about you, somewhere, somehow, even when you least expect it.

My Body is Falling Apart on Me… or, am I falling apart on my body?

Posted: 20 J0000005UTC 2011 in Education, Entertaining, Health, medication, Update
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interactive symptom checker

I think if I used one of these interactive devices, I’d overload the system.

As mentioned in previous times, I have quite a few afflictions. I’m always fascinated by the medical professionals who look at the piece of paper (containing medical history first) and then at the patient. If you were to “see me on paper”, I look like I’m dying, or should be a 500 lb. couch potato (no offense to you “couchies”- made that one up on the spot. Clever, eh?).

We’ll start with physical diagnosis and work our way across the board to emotional and psychological diagnoses (current and past included, you’ll see):

Cerebral Palsy-got that one at birth, lovely umbrella diagnosis. If only it covered or explained all of my ailments

Jaundice-birth, but after bright lights blinding me, good to go after a few days

Hyaline Membrane Disease (severe), also at birth, due to swallowing mother’s blood- ewww! No longer an issue, but am I now a vampire?

Not sure if this warrants its own line, oh well…. Multiple blood transfusions as a baby. Glad in this case to not be a Jehovah’s Witness (nothing against them, just might not be alive if I was one considering they don’t believe in receiving blood transfusions).

ADHD-definitely super duper severe (according to one dr., even with meds.) An acquaintance once said I was the poster child for this. Though I believe I have this, I wonder if the diagnosis is correct. The signs/symptoms didn’t appear until about 9.

Anemia-on and off since young adult-ish era

Poly Cystic Ovarian Syndrome/Disease-diagnosed at age 20, essentially reversed illness by age 24, doctor was surprised, but I got off of Glucophage (a medication for Diabetes as I was considered pre-diabetic)

Hypothyroidism-unsure if it was lithium-induced or biological in origin. Doctor never took a baseline level prior to initiating lithium therapy. First blood test showed poorly functioning thyroid levels. Have tried (with endocrinologist’s approval) to discontinue drug therapy. Unsuccessful with attempt, levels did not remain consistent off of medication.

Insomnia- this one can pretty much go back to as young as I can recall. Horrible sleeper as long as I can remember. This resulted in a diagnosis of

Narcolepsy- yep that’s right, I have clinical primary narcolepsy and primary insomnia. The doctor is mystified. Note, cataplexy though a hallmark sign of this disorder, not a necessity to make an established diagnosis. I do not have cataplexy just random falling asleep usually when under stress or extremely bored and unable to move.

Exploding Head Syndrome-yes, this is a real diagnosis as I have to explain to most healthcare professionals upon giving them my full health history. It’s just as it sounds; a large noise occurs in the head (not schizophrenia thank you) during the period between wakefulness and asleep. It is rare to happen more than a few time, rare to happen in females, non-smokers and usually only occurs in obese, over 50 years old populations. Well, I am female, under the age of 50, not a smoker, not obese and it’s happened countless time (more than 3 dozen)

PNES- also know as (Psychogenic) Non-Epileptic Seizures or NES. Traditionally, it was thought that these were “pseudo seizures”; until recently it was thought that the person was faking these seizures. It is not false advertising folks, it is an actual seizure without brain wave alteration. These seizures are brought on by stress as the name indicates.

Borderline Personality Disorder-if you have read any of my previous blogs, you’ll see where this one stems from with a heavy history of abuse and neglect.

Situational Depression- Sometimes I think I’m lucky for it to be merely situational. At other times, I am considerably frustrated because there is not a medication which alleviates situational depression and I often run into situations which trigger it, alas, it is a constant on/off battle with my brain.

EDNOS- Eating Disorder Not Otherwise Specified- I alternate between periods of Bulimia and Anorexia, and ordered-eating, so I get this essentially throwaway diagnosis.

OCD- I used to believe that I had the rarest diseases. My doctor even said to me, “most people come here thinking they have cancer, or AIDS and you present with this (Hanta virus)? I mean it makes sense considering my family’s medical history and my personal medical history that I should be concerned about having the rarest of diseases, right? Fortunately, I went on a awesome medication at age 15 and discontinued it at age 18. I was essentially symptom-free. Sure, here and there I have medical student syndrome, but as for all of the diagnoses I’m listing, these have been established by medical doctors or professionals.

Seasonal allergies and allergies to half of the world-trees and grass for seasonal, mold (all year-round) mild allergies to Cantaloupe, Honeydew, Coconut (in excess of a small amount), Kiwi (in excess of a small portion), Mango, Pineapple, Walnuts, Pecans, Macadamia Nuts, Chestnuts. There’s probably even more than that, I just don’t always recall it in full detail. I do however know what I’m allergic to if I were to come across it.

Urticaria, unknown etiology surprise surprise. If I’m stressed and don’t react with either eczema, a stress seizure, dissociation, surely something will appear. I’ll guess this is the etiology for the hives.

Paralyzed vocal cords-for nearly one and a half years, I didn’t have a voice. Initial speculation was cancer, followed by unknown (for most doctors), followed by overuse, stress, hiatal hernia. The whole time I presented to the doctors that it may be attributed to mold toxicity being that I tested positive for three types of mold in my system. Each physician shooed that diagnosis away aside from the non-traditional physician who initially mentioned and tested me for it. Unfortunately, he was 3.5 hours away from where I was living at the time, and I only had one day off per week, spending it going to doctors a bit closer, and occasionally relaxing. The voice came back after leaving the moldy environment and then disappeared again when I returned to an excessively humid, and therefore moldy environment, complete with breathing challenges.

Hiatal Hernia-one day my stomach felt weird, I went to an urgent care, and was referred to a GI doc. I had an endoscopy where they biopsied a part of my esophagus and this lovely diagnosis was made.

Nasal Fibroma- removed when I was 18. Removal lead to site infection which spread and led me to stage 4 antibiotics, the summer before I was set to begin college. My freshman orientation was a blur to me as I was still recovering from the infection and doped up on pain pills. Great way to end high school and start post-secondary education.

Thornwalt cyst-yeah I think I still have this one, no need for removal though as it’s not causing any signs/symptoms that I’m aware of.

Scotopic Sensitivity- sensitivity for me includes to light, and certain colors. It’s a perception disorder. Irlen Lenses can help

Speaking of perception disorders, I probably have Sensory Integration Disorder. That’s not diagnosed though believe it or not. There’s a time and place to see a doctor for things, particularly when it is necessitated. I have gone to far too many doctors offices and spewed out my history. As I’ve conveyed, on paper it looks like I’m dying, so I try to avoid stepping foot into a doctor’s office unless I have to, or because I’m observing a super awesome surgery (as I did a few weeks ago). Plus, our healthcare system does not make things financially feasible to go for any condition, never mind the significant ones.

xxx (Ken’s partner at the moment) has unofficially diagnosed me with Aspergers syndrome. I don’t take to heart what she says, even if she is a physician because she’s full of issues herself, namely an untreated personality disorder.

As a child, I had processing disorders, namely auditory processing and reading comprehension challenges. These can be referred to as learning differences or learning disabilities. Semantics.

Well, that about sums it up for now. I assure you, that if I think of any more or I receive additional diagnosis, it will be posted on this here lovely page in due time.

Thank you as always, for choosing to use your limited time to read this blog!

I sit in class, amongst people, most younger than myself by at least half a decade.

What was I doing when I was their age?

Oh, yeah that’s right, I almost forgot.

I almost forgot the reason I didn’t graduate on time. Why it will be more than 10 years after high school graduation when I receive my college degree.

Almost.

I was in college at their age.

I was in college, part-time with an entire continent separating myself from the rest of my family.

My family who sent me to the first program.

I was excited at first when I heard I may be going to California.

It was two weeks after I was discharged from my first psychiatric hospital stay.

The stay that according to Conroy, the social worker who admitted me was supposed to last between 3-10 days.

I stayed 18 days.

No outdoors. No light aside from the fluorescent ones beating down on me in the halls, in the rooms, in the showers.

After discharge, no one knew where to put me. They said it would only be once that I’d be in the hospital for things like this, that I was just going through a “transition”.

I guess I have a lot of “transitions”… 8 hospitalizations, 3 residential treatment centers totaling 2 and a half years and half a dozen IOP/PHP and 3 attempts later.

I remember sitting in class half a decade ago wondering if I’d make it to college graduation.

I remember thinking that I would get in trouble if I was seen chewing gum, not by the professor but from someone also in program going to school seeing me. We weren’t allowed to chew gum in the lower levels.

I remember not being able to accept rides from friends at school, even from my professor the night that it was pouring rain, pitch black, and I was all alone at the school bus stop with nothing or no one around late on a Friday night after class finished.

I remember begging my parents to get me out of the first place, saying, “I’m sorry, I made a mistake.” They told me it was either the program or the streets.

I didn’t even do anything wrong to deserve long-term residential “treatment”.

I was severely depressed, I needed love.

Love is not what I received.

I received way more fake hugs than I’ll ever get in my life real hugs.

I saw people try to kill one another.

I saw other people struggling, constantly talking about suicide and the next attempt.

I saw people attempt.

I saw people relapse.

I got abused, mostly verbal and emotional abuse.

I thought that was in the past. I thought the abuse was done.

It was thrown in my face constantly.

My current classmates have an average age of 20.

At the age of 20, I was taking 20 prescribed pills a day.

Once, someone from the program had to call my professor prior to the school year beginning to let him know that I was heavily medicated and may fall asleep in class.

My classroom experiences at a traditional college age are skewed.

So, when I sit in class, a bit ashamed that during the working hours I’m in a classroom at a desk, I wonder what happened, I almost forget what went on.

I know others wonder why I’m in class at the ripe old age I am.

If they ask, I tell them, usually surface-level things.

Usually, I just say I did the college route backwards, went to work first after high school and now I’m in school.

If only they knew the real story, the fucked up shit that I was locked away for, years of my young adulthood taken from me, because of depression stemming from abuse, neglect, and in-affectionate beginnings.

When I sit in class, I start to think of all these things. I think about what I was doing when I was their age, what I was exposed to, what was going on in my life.

Absolute madness.