Thursday, September 28, 2017

Sometimes my brain sucks... still

It's  been a while since I've done an "in the moment" post. I thought it'd be a good time. PTSD recovery is like a roller coaster: intense ups followed by intense downs. Today (not really all the day, just this moment) has been a down. 


You know what sucks? My brain sometimes. 

I came to help guide people fly fishing. They are veterans who are part of Project Healing Waters, which uses fly fishing to help wounded veterans. 

I really enjoy fly fishing, and while I wouldn't say it has played a big part in my own PTSD recovery, it is something that has helped. It gets me outside and moving (while obsessing over catching fish instead of exercising). When I catch a fish, every other thought goes away. I forget about everything except that fish. I want to share that with others. 

Today, my brain won't let me. It has decided today is a good day to experience many PTSD symptoms. Memories that won't stop playing. Anxiety with no known cause. Fear that is so intense, I feel paralyzed. Sadness that makes me want to cry, but I can't because of my fear. Shaking which would probably go away if I let myself just cry. So, I turned the guiding over to todd and the others, and I'm hiding. 

I can be more gentle with myself today, I've been working hard with physical therapy and therapy. I know to expect "flare ups" like this. I also know that one on one situations bring up so much anxiety that the general anxiety is bound to trigger more specialized anxiety. Being not needed (there are more volunteers than participants today) makes it easier to fall apart. If I couldn't turn over responsibilities to anyone else, I'd do my best to teach... but thinking of that makes me hyperventilate a little... so I'm glad I'm not needed and I can just expose myself to thinking about guiding somebody. 

There's also the pressure to be a good guide. What if they don't understand what I'm trying to teach? What if they don't catch fish? What if they hate fishing with a girl? What if I screw it up for them and they never try fly fishing again because I sucked so bad and fly fishing could have been the thing that helped them the most but they'll never know it and it's all my fault? What if I hadn't shown up and they'd have gotten to go with someone who knew what they were doing? What if it was just better if I didn't exist at all? (Wow. It's crazy in my brain. It's just a day of fly fishing... and we are all volunteers. I'm as good as some people and no where close to as good as others. I've not guided before, but the only way to learn how to do that is to try. Todd didn't know how to guide a couple years ago, but he tried it and now he's pretty good.) It feels a little better reading my crazy thoughts back to myself. Those are some silly thoughts. 


I still have the memories that keep playing. I still feel a little scared and sad and anxious, but less crazy. I think today, I will take pictures. If I get some good ones, that might be helpful to the project. If I want to, I can even tell people why I'm not guiding but taking pictures instead. Some of the vets might understand senseless anxiety, and some of the other volunteers might too. That might make it easier next time. Maybe next time, I'll even be ready to actually guide. 

Tuesday, September 26, 2017

I am a fighter, and I am not ashamed of it

Fighter. 
I've never identified as one, and definitely didn't want to be one. I wanted to be a peacemaker, kind, gentle, meek, submissive, quietly wise, and never NEVER violent. 

Last week, I had physical therapy for pelvic floor issues, but she spent most of the session doing trigger point releases in my neck. During the session, my whole body started to shake and I just felt sad. I cried a little, but couldn't identify what caused the emotion. 

Several times over the last week I have had panic attacks. I didn't show my panic, but just felt it. My chest was tight, breathing was difficult, I wanted to cry but couldn't, and ended up walking out to the horses to see if that could help. 

Today I had therapy, and was sharing the experiences with Wendy. She asked me to breath into the tension I was feeling. 

I felt sad and tired. The thought was, "I'm tired of fighting. I've fought so long and so hard, and I feel tired."

I had two memories flash in my head. 
  1. When I was 16ish, and my dad was forcing my sister to go to church by picking her up and throwing her in the van. (She was 8ish.) I stood up to him, and told him it's not okay to treat people like that just because you're bigger and you can. 
  2. The only time I fought Larry. The only time it looked like rape looks like on tv. My memory is still from the corner of the room, as if I'm an outsider watching him rape another person. 

The emotions for both memories were similar. I felt guilty for fighting. I knew I shouldn't. I couldn't help it; something in me had to fight. I had to stand up to protect my sister. I had to fight for myself against Larry (even though I later apologized for fighting and making him do that to me. I never fought him again. From that point on, I held my own legs out of his way. But that night, I HAD to fight.)

As we talked, I felt so much energy in my arms. Wendy has pushed me to do this exercise before: we stand facing each other. She puts her hands up and braces herself, and then I push on her hands with all the energy in my arms. In the past, I couldn't really do it. This time, as I pushed, my arms shook. For five minutes my arms and my whole body vibrated. As the energy dissipated, all I felt was pride. 

Proud of the way I've fought. Proud that I'm still here. I'm alive because I'm a fighter. I fought for what I thought was right as a kid. I fought for myself with Larry. I fought my way out of the marriage. I fought my way out of the church. I fought, because I wanted more. I didn't always know what that meant, but I fought for it anyway. I've fought for my health; I've been to doctor after doctor after doctor (and then more doctors and physical therapists and more doctors). I wanted my life to be better, and I've fought for it. Up until that moment in the barn (I see my therapist at the barn with horses around), I was ashamed of the fighter in me. 

There have been so many outside forces pressuring me to give up that fight. My parents (entirely unintentionally), the church, its teachings and it's leaders (mostly unintentionally), Larry, and other abusers all told me to quiet, or change, that part of me. I prayed and hoped and wanted that part of me to change or go away or die. I couldn't kill it, and I couldn't stop it. For the first time ever, I am so damn proud of the fighter in me. 

I'm a fighter. 



Tuesday, September 19, 2017

#TMI? #Endometriosis #Vestibulitis My life at the doctor update

So a quick update on my life:
I had surgery number two. The surgeon was positive he had found what was causing me pain, and that he had fixed it. Unfortunately, it still hurt. 

He sent me to another specialist who diagnosed me with vestibulitis. That's when the vestibule area of the vagina becomes severely inflamed from the body attacking itself. It is usually caused by an infection. It is sometimes caused by surgeries or nerve damage. Treatment is not a quick fix.

Six months of steroids (topical and injected) as well as finding things that can irritate the area and getting rid of those. (Soaps, tight clothes, sitting, exercise, etc.)

After six months, the Dr felt like I should be doing better than I was. He asked me what my pain level was. When I told him a 5, he said I had a very high pain tolerance. After all the shots and never even flinching, he felt like there should be more relief for me. He sent me to a new new specialist. 

She is a neurologist who specializes in pain. She gave me an injection in the coccyx area (steroids and lidocaine ). That didn't help, so she did one in the right pudendal (the nerve that goes to the urethral sphincter and then down the leg). That brought a wonderful numb relief for eight hours. It also made my whole leg go numb, but I didn't even care. It was such a relief to be numb. The steroids eventually took effect, and made it a lot better. Pain level was down to a 2-3, except for when I sat. That lasted for about a month. She also tried the left pudendal nerve, but that didn't help. 

I decided to go back to physical therapy. Pelvic floor physical therapy sucks, but with the new therapist, it was a little different. She has worked on aligning my pelvis and spine by recruiting muscles that had stopped working and stretching and releasing tight muscles. She also did some internal work, but very little - maybe five minutes a session. 

I've had about six sessions, and I don't know if it's helping the main pain. It is definitely helping my posture, and teaching me how to use my muscles the right way. Long term, I think that will be really helpful. Short term, it is relieving overall tension in my body. 


So, anyway, there's the last year of doctoring I've been going through. 

Tuesday, April 25, 2017

#EMDR #Endo #PTSD #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 toocomplex 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?

Thursday, February 23, 2017

I found sunshine and green and flowers in February

Last year, Todd's granddaughter's school had a raffle.
$20 for the price of the ticket, and he won two round trip tickets to anywhere Jet Blue flies.

We flew to Ft. Lauderdale, Florida, and then got on a cruise ship.
We sailed to Honduras, Belize, and two stops in Mexico. Then back to Ft. Lauderdale, where we got stuck for two days. (Winter storms cancelled our flight, so we stayed in Florida.)

In Honduras, we went to Gumbalimba Park. We saw monkeys, macaws, iguanas, and so many awesome trees and flowers.

In Belize, we visited Nim Li Punit (Mayan Ruins) and a spice farm. I was surprised by how much I loved the spice farm. We got to try the pods that chocolate came from. We also got to try allspice, basil, thyme, nutmeg, and mace. It was beautiful and so interesting.

In Mexico, we visited more Mayan Ruins (Chacchoben) and went snorkeling.

In Florida, we walked to a natural history and science discovery museum.

My favorite part of the trip (of course) was 85 degrees and green and flowers.

























Sunday, January 15, 2017

#ACA #Obamacare Getting Political (Again)



A few years ago when the Affordable Care Act was passed, I wrote a blog post wondering how it would affect me. After all, I was the target audience. I was "uninsurable". I was middle class. I had gone without health insurance since I was 18. When I looked into joining the high risk pool, it was $1000 to insure just me. I was worried I was going to be asked to pay for insurance at that price, and wondered if I would be one that chose to just take the penalty fines.

That's not what happened. I was able to buy insurance. I qualified for small subsidies. With pre-existing conditions no longer barring me from insurance, I was able to buy it at an affordable price. (Without subsidies, I payed $150/month the first year. $220/month the second year, and $230/month this year. I qualify for a $50/month subsidy.)

I had no idea how nice it was to have insurance. With preventive care being covered 100%, I went to the doctor for well checks. I chose a primary care physician, who I saw regularly enough that she knows me. She calls me by name and knows my health history for the past three years, and has been great to have on my team. People with primary care physicians who know them well get different treatment and options than those who do not. When you only see the doctor at the clinics when you are really sick, and you don't see the same doctor every time, they are rushed. They don't order tests or treatments as quickly or as often as they do when they know you.

In 2015, I saw a therapist on a weekly basis starting in July or August. I went to the doctor four or five times trying to figure out what was going on with my chronic pain. I tried various medications, and they did a few different ultrasounds trying to figure out what was wrong. Eventually, I had surgery that included two nights at the hospital in December. Just the hospital stay (not including the surgeon's fee or the anesthesiologist) was $40,000, and that was taken care of 100% by insurance. I wouldn't have gotten the surgery without insurance. I would have continued in pain so intense I would spend 7-8 days/month vomiting, sweating, and crying. My pain wouldn't have killed me, but I don't think I could have lived like that for very long, and it was getting worse at the time I had the surgery.

Surgery helped a lot, but it didn't take care of all of my issues. I had to go back to the doctor for more treatment and more care. I went to physical therapy twice a week for six months. My copay for PT was $60/session, which was expensive, but not nearly as expensive as if I had to pay for it all. (Self-pay was $100/session.)

Then I developed kidney stones. I went to my doctor who immediately ordered a CT scan ($1100!). Also, because she knew me, she gave me a shot of dilaudid and prescribed some percocet that helped while I waited for the stones to pass. Ten days later, I was still in a lot of pain, had developed a kidney infection, and decided to have the stones removed surgically. With that surgery, I hit my maximum out of pocket with the insurance.

My chronic pelvic pain still wasn't getting better, so more doctor visits, more tests, and finally a second surgery: all covered 100% by my insurance. (As well as still seeing a therapist twice a month, all prescriptions, everything all taken care of by insurance.)

Now it's January, and I have recently been referred to another specialist. I will hit my deductible by the end of this month. I hope I still have insurance in a few months, because I really like having it. If I had never known what other people feel: the freedom to go to the doctor when you are sick. The reassurance of knowing that if I need medical care, I won't have to file bankruptcy or struggle to pay tens of thousands of dollars when I don't make that much.

I am very grateful for the ACA. I benefitted a lot. I really don't know what I would have done without it. I definitely could not have afforded the specialists or the surgeries I had this past year. I imagine I would have gone to a doctor when I had kidney stones, but I don't think I would have gone through with surgery. I definitely wouldn't have done the surgery for the endometriosis, because that wouldn't have been an option!

I feel sad and afraid as I think about the future. What will happen to me and to people like me? I didn't have anything life threatening, but what if I had? What if I do in the future? What if Todd does? What happens to the people who are "uninsurable" now? The ACA also protected women from being charged more than men. It protected the elderly from having to pay premiums more than 3x what the young have to pay. It got rid of lifetime caps. That's a lot of protections that would just vanish, and I don't think the insurance companies will keep them in place if they aren't forced to. The big reasons for rising premiums now are the insurance companies trying to make more profits, and I don't see that going away any time soon...

The ACA isn't perfect. It has a lot of flaws, and a lot of things that need fixing. It relies on private insurance companies' participation, and I hate that most of those companies are huge corporations who have always made money by NOT paying for treatment of the sick. But it was a baby step in the right direction. It saved lives. What will happen if it is repealed with no replacement?