Abused again: Trying not to give up on myself

I woke today with a busy schedule ahead of me. I have been dealing with a lot lately, particularly a very chronically sick child. It was also the day I was going to slip in taking care of myself by getting an x-ray of my hip that I injured 2 months ago and have been dealing with chronic pain ever since.

I wasn’t seeing my normal orthopedic doctor because I needed to get in quickly as I don’t have many self care openings in my schedule these days. In retrospect, I should have caught the red flag of this particular doctor having multiple openings for a next day appointment at one of the top orthopedic practices in town.

Nope. I jumped out of bed to get to the appointment early in the hopes they would take me early so I wouldn’t miss my therapy appointment afterward.

Of course, I sat in the waiting room past my appointment time before the front desk even called me up to fill out additional paperwork. So much for arriving 20 minutes early.

You know those doctors always have more important schedules than the people, so let’s make sure that is reinforced.

As I am finally walking back to meet the doctor, who incidentally wasn’t seeing any patients but me, I noticed in the paperwork they handed me to give the doctor that it has all the prescriptions listed that I have filled at my local drug store. On it, a long list of many types of psychiatric medications.

Great. I am going to get labeled a psych patient and treated poorly, as I have been through that scenario more than a few times.

The doctor pops in and spends 95% of the appointment time talking about himself, his health, the death of his brother, his age, how he doesn’t suntan anymore, what he watched on tv last night, his experience with his last colonoscopy, the cost of medications he takes, and how he treats his his rosacea.

I am feeling really grounded, but taken aback by this strange doctor showing no interest in me, and the clock ticking in my head for my next appointment.

I do my best several times to bring up the pain I am feeling on my side.

Finally, the doctor comes toward me to examine me. He starts touching me and says over and over as he moves his hands around my body “does this hurt?” When he found where it hurt he pushed in really hard and I almost jumped off the table. He says he knew that was where the pain was coming from. It was high up on my left side.

I continue to feel grounded but focused on trying to accurately answer this man’s questions about my pain as he touches me. I am so focused on trying to accurately answer him I don’t realize he is now touching me in my vaginal area and talking about bones in the pelvic area—that have nothing to do with why I am there.

I hear a couple of voices in my head calling me stupid because I don’t realize this man is touching my vaginal area for no reason and talking about how my pelvis bones touch each other.

In a slowed reaction, I realize the voices are right and this man is touching me inappropriately. And I do nothing about it.

I freeze.

I don’t stop him or tell him to stop.

It’s as if it is not happening to me, but I can hear this man’s words and feel his touch that it is happening.

Fortunately, the man seemed spooked for some reason and jumped up to go get an anatomical dummy to show me the bones in the pelvic area, which again had nothing to do with why I was there.

I couldn’t hear him so well any more as my internal world was starting to come undone.

I knew I had to get to my car before I acknowledged to myself what had just happened, so as soon as he asked me if I had any other issues I wanted to discuss, I said “nope” and raced out of there.

I tried my best to drive to my therapist’s office without coming completely undone. I made it there and then felt dead.

I let it happen again. My therapist probably doesn’t even believe me. How can these things keep happening to me?

I lost hours of time in my therapist’s parking lot as I switched between parts trying to process what had happened. I fought tooth and nail to not let other parts cut open my throat. The rage inside me is at its worst when this idea is present.

I am extremely angry at myself this happened to me today as I was just speaking about how this happened to me with another doctor some years ago, and I thought I had grown so it wouldn’t happen again.

My therapist asked me if I wanted to file a complaint. I didn’t. I know full well that my list of psych meds alone discredits anything I might have to say happened to me, which is probably why he targeted me to begin with.

I told 3 people today this happened to me. That is progress, but still I am awash in confusion how I keep letting this happen to me. Where are those strong parts of me when this happens?

Will it ever stop?

Doing my best to manage my C-PTSD and DID while navigating a sick child

My son has been diagnosed with a serious neurological disorder called PANS, which explains the symptoms we have been seeing in him for years. Please take a little bit of your time and watch the documentary “My Kid is Not Crazy” on Vemio to learn more about PANS.

I have found that his diagnosis and the related experiences I have had since then has kept me in a constant fight-or-flight mode that I can’t pull out of for longer than an hour, and this has been going on for weeks. I’m exhausted.

My own complex PTSD from my severe childhood abuse has been activated in more ways than I even comprehend at the moment. I just know I am functioning in a state of chaos and fight/flight.

My Dissociative Identity Disorder is not helping as I have accidentally injured myself these past couple of weeks because I am so distracted by the conversations happening in my head.

I have done my best to hold my DID in check, but as I am nearing exhaustion, it is getting more difficult. Arguments between parts. Large chunks of time missing. New parts surfacing who are under significant distress. Parts worried for us, worried for my son.

And then there is this need for me to save my son. Not uncommon for any parent facing this situation, but feeling really out of control due to my trauma background. I really cannot stop myself from constantly researching, talking to professionals, going to appointments, and talking to other parents who are in similar crisis.

The ironic thing is that parents of children with PANS/PANDAS typically develop PTSD as a result of going through this nightmare with our kids. This I recognize in my fellow PANS/PANDAS parents, and do my best to help.

I know I need to find the balance between taking care of myself and taking care of my son, but I feel so triggered by the entire situation I really feel unable to stop.

As a child no one made any attempt to help me, but by God I will do everything possible to help my son. This logic is driving my being.

The similarities between my trauma and this situation are endless, but my mind is not clear enough to really dive into that now.

Though I know I am doing so much good for my son by searching for answers, I also recognize as a parent this is the first time I have felt my diagnoses significantly impact my ability to maintain stability and feel solid as a parent. Though my kids don’t notice, I do, and it worries me as I can’t stop myself from fight/flight mode and all that entails.

Is my overwhelm just an excuse for laziness?

I am confused at the moment. I continue to struggle with who I am. I mean, I know who I am and what I believe usually, but the other pieces of my identity don’t always back me up.

My family really needs me to work so our children and the adults can get all their needs met. We are struggling financially, and not too long ago I was bringing home a good paycheck.

These days, I feel like I can’t work. I am working at getting through the days and taking care of my kids, making major changes to my health, and keeping myself emotionally stable.

The fact that I am functioning by getting out of bed and going out into the world, and actively taking care of my kids everyday is a miracle that didn’t exist 4 months ago.

Yet, there is increasing pressure from my spouse, myself, and our mounting debt to get myself back to work in my old job so I can bring home that money again.

At the same time, I still find myself getting overwhelmed by little things from my old life that were easy then.

Today, my major accomplishments were to make myself breakfast, pick up my son from camp, take him to a park for an hour, and check Facebook a few times. Those few things literally took up my whole day and felt like all I could do.

I hear inside my head “you are so weak. Quit complaining and stop being lazy and get back to work.”

I never considered myself a lazy person, but maybe I am. Maybe the overwhelm I constantly feel is just an excuse to get out of work.

I like giving my family money so we can live a good life. I just don’t know if I can put myself back into that position of doing what I do to make good money.

I am good at this work when all parts of me are working together, and anxiety doesn’t hang close by. Sometimes I miss it, so sometimes I secretly dip my toe in the water and feel overwhelmed like I can’t do it. Then I feel completely inadequate.

Who am I? Am I this smart, talented, strong woman who is a good provider for her family, or am I this pathetic, damaged, weak woman who gets overwhelmed when a door slams too loud?

I don’t know. It seems like this is my fate to be on a polar opposite pendulum depending on the moment.

One moment I am feeling healthy and strong with the health changes I am making in my life, the next I am falling down my stairs again and re-injuring myself, and feeling depressed about the state of my health and the hopelessness of not getting help or answers from the medical community.

I was thinking earlier today maybe the medical community is just writing me off because I am 50. I feel like I am 30 in spirit, so it is confusing to be thought of as old.

My life is frustrating and good. I am smart, but cognitively impaired sometimes. I am strong, but easily hurt. I feel really healthy, then chronic pain consumes me again. I am super stable, and then utterly disabled by the chaos in my brain.

The only thing I know for sure is that I am usually a really good mom.

Other than that, who am I?

The Benefits of Neurofeedback for the Traumatized Brain

Neurofeedback

Let me begin by saying I am a huge believer in the amazing benefits of neurofeedback for everyone. In fact, if you were around me daily, you would probably hear me griping about why neurofeedback is not done in every doctor and therapist office in the country, and the madness of insurance companies not wanting to pay for this very effective tool for so many ailments.

I was first introduced to neurofeedback this past Summer when I had gone to an “integrative” treatment center for trauma. As someone who was becoming more and more frustrated by the short-comings of talk-therapy alone, I was looking for something that would address the entire mind-body-spirit of my being.

I have experienced severe childhood abuse, which resulted in a lifetime of wrestling with Dissociative Identity Disorder (DID), Post Traumatic Stress Disorder (PTSD), Depression, and Anxiety.

Many of us would like to believe that once we escaped the childhood abuse, we are free to live a happy life. What most people don’t speak about is the lifelong affects severe childhood abuse has on a person’s brain and physical health, which contributes to the lifetime of struggling with various forms of mental illness as a result.

I have been in treatment for my severe trauma on-and-off for 28 years. I think during that period most people in the field of treating trauma would agree with me that they haven’t always known what they are doing with treating trauma.

Today, so much more research has been done to show more effective ways of treating trauma. For instance, EMDR has solid research behind it as a very effective tool to help many trauma survivors process their trauma faster, which means many people are not stuck with the aftereffects of trauma for their entire life. This is huge, but not always told or offered to trauma survivors. Though, to be fair, trauma survivors are more likely to stumble across EMDR than they are neurofeedback.

If you read a lot about trauma, or are in the field, you should be aware of the cutting-edge trauma experts like Bessel van der Kolk, Peter Levine, Dan Siegel, Pat Ogden, and Stephen Porges. There are a lot of other so-called experts out there, but most of them are what I would term “old school,” as they have not embraced the significant importance of addressing the mind-body-spirit when attempting to help people with trauma. They are sticking mainly to talk-therapy only as an approach, and this is a horrible disservice to those who have been traumatized.

I live on the East Coast, and found myself not making any progress with the swamp of trauma symptoms I was stuck in while I was doing extensive talk therapy only. I decided after doing a lot of research to head to California to get help with my trauma symptoms that were so severe I wasn’t able to function in my life. I was desperate as I had been in bed for 17 months, and generally not participating in my life,

After arriving in California, I quickly had an entirely new vocabulary for trauma treatments, and I was open to just about everything. I am tempted to go into all the different therapies here, but I want to stay focused on the neurofeedback. Neurofeedback therapy for trauma survivors was a given for every therapist and good trauma treatment center I looked at on the West Coast.

Ideally, when you begin neurofeedback, you want to get a QEEG or “brain map,” which is a snapshot of your brain and how it functions over a fairly short period of time (for me, it was 40 minutes under different scenarios). This brain map is so valuable because it can be compared to what a normal functioning brain looks like, and it can also be used to show that during the brain mapping period, your brain might look similar to someone who has anxiety, ADHD, PTSD, pain, depression, etc.

In my case, my brain map looked worse than even I expected, so it was a little overwhelming to sit with the results. I had done a brain map of my son who has some attention and sensory issues, so I had an idea what it was supposed to look like.  In layman’s terms. my brain showed a shit-storm of color in areas that should have shown up white, and my brain waves were extremely erratic and all over the place outside the normal range. For someone with complex-PTSD, this validates the daily symptoms we experience.

I learned a very important word called neuroplasticity, which refers to the brain’s ability to reorganize and heal itself by forming new neural pathways. This concept is so, so important to think about when looking at healing trauma.

Once my rational brain came back online, I knew I could repair much, if not all, of what was wrong with my brain through neurofeedback.

Through only 15 sessions of neurofeedback, I came out of it with some extremely important results as a trauma survivor. I don’t know how else to put it, but my mind was stronger. I was no longer depressed. I had less anxiety and an easier time going to sleep. Most importantly to my overall healing from trauma, the 15 sessions put me in a place where I could regulate my emotions better, which means I could tolerate talking about the most difficult parts of my trauma, which is something I was not able to do prior to the neurofeedback.

The inability to tolerate difficult or overwhelming emotions is probably the single biggest reason why trauma survivors stay stuck in talk therapy and don’t make the progress they need to move on with their lives. Yet, my experience in the old-school trauma circles that dominate the trauma industry is that there is almost no mention or even knowledge about the benefits of neurofeedback for trauma survivors.

If I look today at all the mainstream trauma treatment centers in the U.S., there is no place that is currently utilizing neurofeedback despite the extensive research that supports its usage. The only places that seem to offer it are the places where your insurance will not pay, and you are expected to pay out-of-pocket $40-50k per month for treatment. That’s the only way to get intensive cutting age trauma treatment at this moment.

The good news is that you can find neurofeedback offered on its own in some outpatient settings. I live in a major city, and there are probably about 14 options listed on a Google search for people to pursue neurofeedback. Typically, if you have severe trauma, you can expect to do 30-40 sessions for the neurofeedback to stick for the rest of your life.

When I returned to my home city on the East Coast, I found an excellent neurofeedback provider, and I am really looking forward to updating you on the continued results I experience to lessen my symptoms and to help my brain function the way it is intended.

neurofeedback_1

My hope is that you take away from this that neurofeedback works for many, many problems people struggle with. Besides the symptoms of trauma, it has been shown to help people with ADHD, Autism, Insomnia, headaches, Anxiety, Depression, and overall improved brain performance, which is why you will hear of Olympic athletes who use neurofeedback to enhance their performance.

Neurofeedback is not new and whacky, There is lots of science to support it. Don’t expect your doctor or therapist to recommend it, because that is not likely to happen. But, if you are feeling stuck or want to get better quicker, it is a no-brainer to take advantage of neurofeedback to help heal your brain.

And if you think your brain is just fine as a trauma survivor, let me mention when I took the brain QEEG, I was feeling relaxed and nothing was bothering me too much. But, what showed up on the QEEG was a huge amount of anxiety that I am so used to experiencing everyday that it did not seem like a big deal and was unnoticed by me. This unnoticed anxiety I am used to living with has already caused me some serious health consequences.

musclebrain

The bottom line, if you have the means to do so, look into neurofeedback and give it a try. It is easy to do, and the results can be life-changing. I don’t know anyone who wouldn’t benefit from a stronger functioning brain, even if you think you have no issues. If you have a severe trauma background, do it. It will save you years of talk therapy time and money, and will give you a better quality of life.

 

 

My Brain After Trauma

Gehirn - Schwingungen 3

Some days, I like to forget about my horrific abuse history and think I am just another ordinary person trying to get by in this world. After all, I can get distracted by the things in life the same way my presumably ordinary neighbors can.

I appreciate the moments when nobody knows my big secret about having Dissociative Identity Disorder (DID) and Complex Post Traumatic Stress Disorder (PTSD), and that people think I am just another neurotic person, similar to themselves. I am a master at hiding my symptoms.

Then there are the moments when the truth slaps me in the face so hard I can barely stand up again.

This week I met with a doctor to go over my results of some cognitive testing and my QEEG, or brain map. I am very interested in alternative or nontraditional therapies in treating my DID, so I am working with a new “Brain Doctor,” in addition to my traditional talk therapy.

I have always known I am sometimes cognitively impaired, and certainly sometimes operating from a “trauma brain.”

Though I had neurofeedback this past Summer for about 15 sessions, the providers I used never shared what was going on with my brain—they shared positive statements about the neurofeedback results they were seeing. Never the baseline.

In my discussion this past week with the new doctor, it was explained as sensitively as it could be, that I am extremely cognitively impaired and my brain waves look like a badass, not good, electrical storm.

I was told calmly and slowly they have seen worse, but it is pretty bad. The doctor is a genuinely good person and an optimist, and believes she can help repair much of my brain problems, even as severe as they are.

Because I had my son go through this process for a different reason, I knew what the brain pictures were supposed to look like. You want the brain to appear white on the paper.

I was completely overwhelmed by the amount of color on every one of my brain images.

I thought I was really calm during the actual test being done, but the results make it look like I am an anxious wreck. I guess my body has simply become used to the free-flowing anxiety from my PTSD, and I only recognize it when it is over the top.

I showed my brain in my best state. Can you imagine if I showed it when I am doing really poorly?

PTSDbrain

Two years ago, I was working in a highly demanding job in which I was quite successful and made a lot of money. Today, I am not working at all.

The one sentence from the doctor that stood out to me was when she gently said “I can see why you are not working, your executive functioning is extremely low.”

A dagger in my heart.

The scribble scrabble brain waves on the page were not something I can deny. I don’t need to be a doctor to know it isn’t normal looking at all.

The mental anguish I feel on a regular basis has just been verified as totally real, and it is as bad as it feels. It is not hidden or made up. Through this QEEG, I let people see the mess of a brain I have. Lots of internal conflict about doing so.

“You’re such an idiot, why did you let people see what it looks like inside.”

My trauma has without a doubt destroyed the way my brain is supposed to function. Maybe I shouldn’t say destroy because my favorite word is all the buzz these days—“neuroplasticity” (when the brain can heal itself), there is hope through neurofeedback and other brain therapies to repair much of the damage.

I always thought I wanted to see what my “DID brain” looked like. At this point, I am feeling it was a mistake, but hopefully some day I will change my mind about it.

It is an overwhelming picture of myself. And, I actually feel shame about my brain. That’s a new one.

This morning I was looking at a job announcement that came to my email, and what followed were the voices in my brain telling me I can’t possibly work given the extremely low level of executive functioning I am at (confirmed by these test results). Sigh.

I always knew the abusers from my past ruined my brain, but I secretly didn’t want it to be true. Parts of me appear to be so severely abused. I didn’t want to believe they could be as badly abused as they felt and claimed. I realize now how much I was clinging to the hope that not all of my story was true.

It is hard to hide from the serious consequences of the severe abuse I endured throughout my life. It is sad when the ability to deny the consequences is gone.

 

Pounding my PTSD head

Agonizing torture. This is what I experienced today in the name of medical care.

I had a special MRI today, one that would show more advanced pictures of my spine.

I have had MRIs before, and the closed ones are always difficult for me to make it all the way through. But, I manage, somehow.

Today’s MRI was different. They asked me if I had medication before I entered the room, in which I responded “no” because nobody had mentioned it to me.

I approached the room and for some reason it was set up in a hard-core scientific way that made it so no one could mistakenly enter. There were lights all around the door frame, and it was sealed in a let’s keep the zombies out kind of way.

My anxiety level went up.

I entered the room and took one look at the MRI machine and my anxiety went up more seeing it was a closed MRI that was actually closed longer that the last one I had been in with a struggle.

I could feel myself starting to come unglued inside, but fighting with myself that I needed to get this done.

I started dissociating, and laid down on the table, placing my neck in the head device. I was starting to feel a panic attack coming on, which is not something I typically experience.

The true horror of the situation came into being after I resolved to myself that I must do it and can do it. That’s when the technicians places a mask-head cage device over my head so I couldn’t move my head if I wanted to.

I could feel myself crying and panicking all in one. I am thinking to myself this is the worst thing that has happened to me since my horrific childhood abuse. I am thinking I should tell them I have PTSD.

But, I close my eyes and tell them to go ahead. All the while knowing how emotionally damaging this is to me.

The loud noises are crushing my mind and spirit until I am the living dead in this machine/torture chamber. I am so dissociated I can no longer move, think, talk, or do anything for myself. Severe collapse resulting from severe retraumatization.

My living dead status enabled me to make it to the end. I could not move at first as I wasn’t self aware enough to know what was happening. I couldn’t talk to the technicians afterward. They didn’t seem too concerned about my changed mental status.

I finally made it back to my car. Totally wrecked by the experience. Split into many pieces at once. Some believe they drilled into our head during the procedure. Fragmented all over the place.

New trauma. I let it happen for what I thought was the greater good. I think I should have stopped it when I saw that head cage.

My spirit can’t take this type of experience. But what was I to do?

9 hours later and my body and brain are still shaking and crying.

And this is modern medicine.

The Mysterious Force Field

Each day I deal with a force field of varying strengths that decides whether I get out of bed or not. Today it was particularly strong and it barely allowed me to get out to go to the bathroom.

It seems strange to me that my pack of insiders who control the strength of the force field on any given day pick the bed as our safe place. Growing up, my bed was often a place where sexual abuse occurred, so it wasn't very safe.

I have been trying to reason and make sense of this force field for 17 months to no avail.

When I explain it to others I think it must feel like what people experience when they become paralyzed. Their brain can try all it wants to tell the body to move, but nothing happens. I don't understand this disconnect in me.

The inside people responsible for not allowing the body to get out of bed do not let their issues be known so I can try to help, or get them help with it. So, I remain a prisoner.

Those of you who don't understand Dissociative Identity Disorder (DID) probably think I am not making a whole lot of sense, or just playing out some kind of depressive psychotic game.

The truth is that I live in a body that I don't always get to control, even when I am conscious and present in it. I have others in my body who also get a say in what happens with the body.

Meanwhile, my life is passing me by. My children are growing up without me, my life is not being lived, and my health is deteriorating. This is not what I want, and I have no idea how to change it.

I sound like a victim because I feel like a victim. Yes, we are all quite capable of victimizing ourselves. Abusers do a good job at leaving that skill behind along with the other damage to us.

I am trying everything I can think of to make this change. New therapies, new pills, new environment.

If I fail, there is a good chance I will lose my family and my health. I really want to succeed.

What it will take, I don't know.

Stay tuned to see the end of this story.