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Tuesday, April 25, 2017

EMDR, Endo, PTSD, and Trauma All of the problems (and the past) collide. Moving forward


A few days ago, I posted this on Facebook:
"Lest anyone think my life is nothing but flowers, cute kids, and horses. Here is what I'm experiencing at this moment: full blown panic attack over making a phone call.
Here's the story:
For the past couple of years, I've had several different issues that have required many many visits to doctors.
Every time a treatment isn't helpful, and I have to call the doctor's office and tell either the doctor or his medical assistant that I'm not feeling any better, I get so anxious. Just the thought of it reduces me to tears and panic. I've done it a lot, and it doesn't get easier or better.
I can't really tell you why, but I feel so panicked at the thought of talking to someone and telling them I'm still in pain and I still need more help.
I had horrible experiences with doctors when I was younger, but everyone I have worked with for the last two years has been amazing. They've been empathetic, compassionate, kind and eager to help. When I left the doctor's office on Friday, he told me to call him to let him know how things were going.

I am aware that the absolute worst that could happen is they think I'm stupid, weak, or needy for calling. (That's not so bad. I'm posting on Facebook for all of my friends and acquaintances to think that about me, and that's not so painful. Also, it's unlikely anyone there will think that about me since they told me to call.) The best that could happen is they try something new that does help.

And yet, I'm shaking and crying at the thought of calling them again.
Anxiety is weird."
It came about because I had just listened to a podcast: Hidden Brain's SchadenFacebook. Hidden Brain is one of my favorite podcasts. This one was all about how people post one thing on social media (Instagram and Facebook mostly), but their lives are completely different. (i.e. Posting happy pictures of vacations, but in reality they were miserable and fighting with each other.)

The podcast talked about people found they felt much less alone when they were more honest. Since I have experienced that, I couldn't help but agree with what the podcast said. Anxiety and panic attacks are uncomfortable and weird, but I am no longer ashamed of them... so... I shared.

It worked in making me feel less alone. I got something like forty comments of solidarity and support, plus several personal messages. That was helpful.

The one thing I couldn't sort out was what the anxiety was all about.
Physically, my body was shaking and tense. I felt like I couldn't breath and when I tried to breath, I'd cry. At the same time, I could rationally sort it out and tell you there was no reason to be panicking. There was nothing threatening in the situation. Even the worst thing I could think of was not THAT scary. What do I care if people think I'm needy or whatever the worst they could think of me? I don't. Not really.

Finally, Todd asked what I would do if he was the one panicking.
I would tell you, you don't have to call. I would also offer to call for you.

He offered to call for me. He left a message. The nurse called me back, and I had no problem telling her what was going on. We set up an appointment - I wrote about that last night when I couldn't sleep. It was fine.

Today, I had therapy. I told her about the experience of my panic.
She told me to stop trying to be rational and think about it, and just explain what it felt like. 

Immediately, I teared up. I talked about how for so many years no one listened when I talked about being in pain. The best that happened was people ignored it. The worst that could happen was being hurt worse for speaking up. I had several memories running through my head. I let the tears flow as I explained how even though I have good experiences for the past few years of my life, I can't just let go of the years of adapting to neglect and mistreatment. Also, sometimes it hurts worse when people are compassionate and empathetic now. It reminds me of how mistreated I was. It wasn't normal to be ignored or even punished for expressing my needs and wants, but it was MY normal. That is a sad thing to realize - even if it is only brought to my attention because I am not being treated that way anymore.

She helped me see how although my head and face look "fine", my body is letting me know I'm not fine. The shaking. The shortness of breath. The stiff and tight muscles. The panic. All of these things are symptoms. 

Often times in my life, I have been told I need to control the symptoms: stop crying, sit still, hide the pain, don't even flinch with shots or pains. I still have some shame letting myself show or be "not okay". Since I can control it, I feel like I should.

And.

I can also see how that is hampering me. There was a time in my life where my body told me I needed to stop trying to control it and the emotions and the automatic responses. I let myself lay down on the floor and suffer pseudo-seizures, flashbacks, and literally reliving past trauma. Normally I was alone. Other times Todd would be with me. I wouldn't have let it happen with anyone else, because I didn't trust anyone else to go through that with me. It brought healing. My body went through the release it needed to, and eventually I got through it. I think I got through enough of it to not need that kind of release anymore, but it seems I am still stuck in controlling myself in some ways.

I am still suffering chronic pelvic pain. I've had every diagnosis, and many treatments, and haven't seen a lot of improvement. Doctor says that isn't uncommon. Both my therapist and I are wondering if there are treatment options besides the doctors to help me overcome body memories and chronic bracing against pain. 

I will continue with the doctor's schedule of treatment. I'm also planning on looking into EMDR therapy. When I looked into it eight or nine years ago, my PTSD was too complex and the therapist wasn't sure she could help me. It was devastating to me. Apparently the science has been advanced a lot, and I have changed a lot too. It is a noninvasive way to try to heal the body from trauma. I'm not really excited about adding more doctors to my life, but I am also anxious to find whatever healing is possible.

I made a decision a long time ago to create the life I wanted, which meant sometimes doing things I don't want to do... so... here goes nothing.


I have all the problems. #chronicpelvicpain #endo



For years I was told my chronic pelvic pain was due to sexual abuse. There was nothing that could be done for me. Go back to therapy.

No one asked me about my pain. A couple doctors did exams and no one mentioned anything like endometriosis, vaginismus, pelvic floor dysfunction, vestibulitis or vaginitis. No mention or even checking for yeast infections or bladder infections a few of the times I went in. (I have been diagnosed and treated for every single one of these things in the last two years. Not all at the same time. Instead we fix one problem and discover another one that has either been there all along or has appeared because of the treatment of the last things.)

I'd just like to state: any doctor that tells you sexual abuse is the cause of your pain is full of shit - especially if they don't offer you actual medical helps.

It's possible the trauma to my nether regions is part of the cause of some of my pelvic pain. AND. There are ways to manage and treat chronic pelvic pain. Pain killers. Physical therapy. Muscle relaxants. Vaginal Valium suppositories. Oral Valium (or other anti-anxiety medications). Trigger point injections. Nerve blocks. Medications to help quiet the nerves like amitriptolene or gabapentin (and others).

Not to mention if there are other things going on, there's treatment options for those too. I've had two surgeries for very real endometriosis, adenomysosis, and adhesions (scar tissue). I've also had several rounds of steroids to treat a very real case of vestibulitis. (Chronic inflammation of the vestibular region of the vagina. It is most often brought on by infections or sometimes surgeries or activities like cycling or horseback riding.) Another surgery for very real kidney stones and a kidney infection. Antibiotics for uti's and treatment for a yeast infection.

Every doctor and physical therapist I have seen in the last two years (once I finally stopped listening to the non-helpful ones), said they wished I'd come sooner because all of my issues would have been easier to fix if they'd caught them earlier.

Tonight, after a hard day at the doctor's while he tries to sort out how to help and heal me, and after trigger point injections that are painful and upsetting to women who haven't been through what I've been through, I'm angry. I'm angry at the doctors who didn't listen to me. I'm angry that they never asked about my symptoms. If they had, they would have known I had all of the symptoms of endometriosis. It was so progressed that my bowels and bladder (and the rest of my innards) were fused and twisted together. If someone had paid attention to my pain beyond just that I had been abused... they could have caught it, stopped it from progressing, maybe even removed it before it got so bad. And I would not be where I am now.

I also want credit. I've been raped repeatedly. I was sexually abused as a child, and then again as an adult. I suffered from complex ptsd. I refused to stay suffering, and fought like hell to find and create a life worth living. I could have kept refusing to go to doctors - especially after I had one hold me down while he performed an exam. I could have decided to quit at any point, but I haven't. Even now, I'm still going to doctors. I'm still facing treatments that are triggering and upsetting and make me remember shit I would still rather not remember.

Going to the doctor without panicking and dissociating was never the goal I was working for, but I've done it. A whole hell of a lot. And I just want a big old pat on the back and huge attaboys for how fucking hard this is, and I'm doing it. I will get past this pain, and I will continue to create the life I want. Which means, I will still keep facing my deepest fears and the darkest places. I will keep going to the doctor. I will keep talking about how it hurts, what helps, what doesn't, and I will continue looking for ways to heal my body and my brain.

To go to happier topics, or "silver lining" or whatever, I did get a treatment suggestion I like: Though the doctor has said I still can't (or shouldn't) ride horses yet, he did tell me to go sit in an ice cold lake. Now that it's getting warm enough the ice is melting off the lakes, I will be out there stillwater fly fishing from my little kick boat. Doctor's orders.


Here fishy fishy!

Sunday, April 9, 2017

#PTSD #rape #RomansinBritain #stillnevermissedashow

Last night, I attended my little brother, Justin's play  The Romans in Britain. (okay, it's probably The director's play or SUU's play, but all plays are Justin's plays in my mind, so.... anyways).

The whole play is about imperialism and the effects of imperialism.

Because of my own life history, what affected me the most were references to rape. Justin warned me in advance. The most graphic scene was of a man raping another man. Everyone (myself included) was worried this scene would be triggering to me. (I have been diagnosed with ptsd because of rape and sexual abuse. When I say triggering, I don't mean upsetting. I mean possibility of flashbacks, nightmares and night terrors that prevent me from sleeping, etc.)

Because of the possibility of being triggered, I had to ask myself why I am willing to see a play like this one.

There are two answers:
1. I love watching Justin do what he loves. That brings me so much joy, I am not going to let what some men did to me keep me from that experience!

2. I want to increase awareness of and effects of sexual violence. If I avoid it, who is going to talk about it?
One thing I try to be aware of is why rape is a part of plays, movies or books. Is it to increase discussion? Is it because it happened historically (and this is a historical piece)? Is it to make a point? Is it just there as entertainment?

I don't know the reason it was in the play originally, but I know why Justin was okay with it, and I know how it makes sense in this play. I'm using it as a springboard for a possible discussion.

Rape is a dehumanizing experience. In a play about imperialism, it effectively communicated the way the invading Romans didn't see the Celts as people, or the Irishman didn't see the slave girl as a person, or the Saxon woman didn't see her steward as a person, or the Celtic father didn't see his daughters as people. They were nothing but hurdles to overcome or objects to be used to pass the time. And in return the daughters, the steward, the slave girl, etc. saw their only way out, their only way to safety, was to kill.

Strangely, the victims killing their attackers was far more upsetting to me than the one scene that was supposed to be the one that triggered me.

It wasn't lost on me that the same actor that played the victim of the most graphic scene also played the man pleading for peace. (Well done Henry!)

In my own life, I want to be the one to create peace as much as I am capable. I also want to feel safe in the world. This is the line I try to walk on a daily basis as I choose when to speak up and what to say. It's a hard line to walk. If I say or do nothing, it feels less contentious. When I say or do nothing, I feel powerless and unsafe. Stones don't make me feel safe. My voice and my words do.

Art has the power to start conversations. I would have liked to find a way to say these thoughts to Justin in person, but I didn't have the chance to sort them out until now.

Here are my thoughts. What are yours?