#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?

A diagnosis (#Endometriosis) and it's not just in my head.

I've had chronic pelvic pain for years. I don't remember if it was there before my miscarriage eight years ago, but I remember being in pain a lot since then.

At the time I miscarried, is also when I woke up to the life I was living. It's when I couldn't ignore the relationship I had with my husband, and how unhealthy and harmful it was for me. I couldn't pretend that I was okay with the idea of being a mom, and bringing a baby into that environment. Along with "waking up", I also finally acknowledged how much Larry had hurt me with his abusive behavior in my first marriage. When I started talking about Larry, and spousal rape, and depression, and false beliefs about sex and relationships, and all of the other shittiness that had been my life, I fell apart.

Pain just seemed like it was all part of the deal.

I believed my pain was entirely body memories, or related to the trauma, and I felt so much guilt and shame that I experienced pain that I barely talked about it.

(I don't doubt doing trauma work in therapy and in life had an effect on my body, and trauma work is painful all over. But it wasn't just the trauma work.)

I went to a doctor a year ago. I told her I had been raped many years before, and now I was in a lot of pain all the time. She ordered an exam, said there was nothing wrong, and I just needed to go to therapy.

Six months ago, I went to another doctor. She didn't do an exam, but told me she could order an ultrasound if I really wanted one. And told me to keep going to therapy.

I walked out of that appointment frustrated with Todd. He pushed me to go to the doctor. He promised they would help me. I told him they wouldn't - they would dismiss me and my pain, because that is what all doctors have always done.

At seventeen, I was told I was being selfish and controlling when I said I didn't want the doctor to touch me. And nobody cared or asked about WHY... The doctor just did what he wanted, quick, painful, and entirely insensitive.

At nineteen, I was held down while a doctor did a pelvic exam, because I was freaking out. I was shaking and kicking, because I didn't want that man touching me... So the nurse held my legs, and I walked out with a huge fear of doctors.

At 28, I got pregnant, pretended like I was fine with exams, because I didn't have a choice... At eleven weeks, they told me I would miscarry, and sent me home. (They asked if I wanted surgery to remove the fetus, or to go home and try to let it happen on it's own. I was eleven weeks, so I was on the border of when surgery would be required. I was afraid, so I went home.) Three weeks later when I was still cramping horribly, bleeding a little, but had also added a high fever and throwing up to my list of symptoms, they prescribed antibiotics over the phone. Luckily, my husband at the time talked to the pharmacist, and the pharmacist told Dann to get me to the hospital "right now".

My general experience with doctors left me feeling shitty. I felt disrespected. I felt used. I felt scared and silenced and I didn't like it. Todd reminded me of a good experience with a doctor I had two years ago, and he suggested that I see her.

I gave him all kinds of excuses: She's not a specialist, she's just a family practitioner. If the other two didn't see anything, what makes me think SHE would. They didn't even ask me about my pain, they just dismissed me... All doctors would dismiss me.

Except that two years ago, she hadn't. She had made me feel like a person, and she had made me believe it was okay to tell the doctor I was hurting. She also made me feel like she could help.

Last week, I finally worked up the courage to call and set up an appointment. On the phone, I told the office girl why I was coming to see the doctor, and she emailed me a questionnaire about chronic pelvic pain.

I cried as I filled out the questionnaire. It was not easy to describe the pain, and I still felt shame for feeling pain at all. I felt disgusted with myself for not being able to power through the pain... I felt disgusted with myself for talking about that part of my body. I wanted to hide, because deep down I knew the pain was all my fault.

If I could just relax, it wouldn't hurt.
If I was good, I wouldn't care about the pain.
If I was good, I would be quiet and submissive.
Along with many other messages that came straight from being a survivor of abuse.

Then I read the message from Larry asking for my forgiveness, and I cried a lot. By Sunday night, something had shifted within me.

Trauma, sexual assault, rape, and abuse have hugely affected my life. (Duh.)
This pain has been there for years, and the biggest effect that sexual trauma has had on this pain, is my inability to talk about it. My fear of talking, and being dismissed. The shame and the guilt that kept me silent. The fear... It was crippling.

By the time I went to the doctor on Tuesday, there was no doubt in my mind that the pain I was experiencing was not caused by rape. I wasn't going to dismiss the pain as just something I needed to work through. I was no longer going to accept "relaxing" as a way to cure it. I wanted help, and I fully believed I deserved help.

I volunteered information. I answered her questions. I didn't shy away from or sugar coat what I was experiencing.

I told her that it felt like someone was shoving a hot poker inside me and twisting. It is usually around my bladder and up the right side, but sometimes it moves. I explained that it burned and cramped when I peed. I told her that it always hurt, but got almost unbearable just before and during my period. She asked about bleeding, and I told her what I had observed. She asked about nauseousness and indigestion, which I also experience a lot... Turns out those are symptoms of severe Endometriosis too.

She gave me the diagnosis, offered a few treatment options, and prescribed painkillers for in the meantime. (The least invasive and least expensive treatment option is birth control, so I am trying that first. If that doesn't work, I can move to hormone blockers, and then possibly surgery.)

This is a huge relief. It's not just in my head. I'm not just making it up. There are ways to treat the problem, and to find even small relief from the pain.

Even though I don't feel any better at the present - finding some hope that it will get better, makes a world of difference.

Would you please stop smiling, so I can know what narcotics to prescribe

I have another infection that has gone into my kidney.
If I had gone to the doctor at the first sign of symptoms, I might have prevented it from getting this bad. There are a few reasons why I didn't go.

I hate doctors... Well... I don't hate doctors, I hate going to the doctor's office. I don't like people touching me, and doctors always want to touch me.

I hate spending money...

The biggest reason I didn't go: I was doubting myself.


I wasn't sure if what I was experiencing was pain from a urinary tract infection, or if it was body memory pain. It's normal for me to feel pain and discomfort "down there" all the time. The best way to describe it is it the physical memory of rape. I feel the same pain that I did then. There was a time when it felt EXACTLY like rape: I felt like I was being ripped apart. It was excruciating. Now, it's not like that. It has dulled considerably, but it's still always there. (The most common search term that leads people to my blog is body memories. People want to know how to make the pain stop. What causes the pain? Is it real, or imagined? etc. I wish that coming to my blog could answer those questions, but I don't know the answers. As soon as I figure out how to stop it, I'll let you all know. I do know that it is getting better. It's like the volume is being turned down. A little tiny bit everyday.)

I write about this, because when I was talking to a couple of friends who have also been through sexual abuse and dealt with body memory pain, and I told them about how I didn't feel the symptoms or at least I couldn't tell the difference... Joy said she couldn't tell the difference, and she waited until she was flat out with a serious infection. Tef just nodded knowingly, and I knew she completely understood what I was saying. It felt nice to know I wasn't alone. I HATE that they have dealt with the pain and the confusion, and I appreciate knowing I am not the only one.

My emotions were all over the place: Feeling broken and damaged. Feeling ashamed that I still can't tell the difference between somatic pain and infection pain. Feeling confused. Trying to figure out what normal is. Beating myself up for being weak (because I got sick) or lazy (because I don't feel like moving off my couch). Once the infection reached my kidney, I had no doubt what was causing my pain, and I went to the doctor as soon as I could.

The doctor was amazing. At one point she told me, "Would you please stop smiling, so I can know what narcotics to prescribe. With the infection you have, you shouldn't be smiling." At which point, I broke into tears. She wrote me a prescription for something to take care of nauseousness, and something for the pain, and then told me to rest way more than I think is necessary. She said exactly what I needed to hear.

I'm on antibiotics. I'm taking cranberry supplements. Avoiding the stuff she said to avoid.
Eventually, I'll learn how to take care of this body I live in.

Everyone's talking about love - guess I will too

A friend of mine posted this quote on her facebook wall, and I had a very strong reaction to it.

"I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love."
~Mother Theresa

Love until it hurts? How long do I let him hurt me before I don't care if I live or die, and is THAT love? I guess at that point, I don't care if I die, so I'd jump in front of a bus to save someone else... but I don't think that's a very healthy place... I've been there, and it wasn't a place I'd like to revisit...

Love isn't supposed to hurt: If it hurts, it could be called sacrifice, it could be called pain, it could be called abuse, but not love...

Later, I had another friend share the same quote... Her and I have a relationship where I could tell her I had a strong reaction to that quote, and ask her why she liked it and how it helped her... 

She explained sometimes there are processes that hurt. And another friend brought up a situation with her mother's failing health. It hurts to face her mother growing older and losing her independence, and through that process they are learning to love each other in new and different ways... 

I realized, I don't see those things as hurting or painful, at least not in comparison to other pains.
The process of change is hard... I cry. I feel tired. I wouldn't describe it as hurting. At least not compared to the hurt that I felt BEFORE: The anxiety. The blaming myself for other people's anger. The fear. The rape. The being thrown into the wall. The constant feeling that I wasn't good enough and could never be good enough to deserve people to be kind to me. Feeling constantly compelled to do. All of those things HURT... 
changing, growing, learning, finding my own strength, facing fears of rejection by letting people get to know ME, being rejected by some, and feeling the love of MANY, ... that feels amazingly, wonderfully, GOOD in comparison.


Being there with a friend who is going through hard times, stressful times, health problems: That's sad, it isn't easy, it's exhausting sometimes, but I am grateful and I don't describe it as painful. (The most difficult part is realizing that I can't fix it. I can't make it all go away. Being with someone's "hard times" forces me to face my humanness. Being human is sometimes painful for me, but I'd rather be with someone as a human than as the robot I used to be. It feels good to be present, even in "painful" situations.) Mostly, having my friends share their journeys with me has felt validating and empowering. "They're doing it too! I am not alone!"




I also recognize that Mother Theresa is a trigger for me:
She DID sacrifice herself and her life to other people. She wasn't an example of a balanced person. Her out of balance was very valued and valuable, and that doesn't make it any more balanced. Our world NEEDS people like her, because there are so many people that take and take and take: In order to have balance, we need people who will give and give and give... 

For so long, I have felt guilt for not sacrificing everything for everyone else... I still beat myself up for not being as "good" as Mother Theresa... In my "black and white" world, if I am not Mother Theresa, I am selfish. Until I have given everything I have, until I have hurt enough, I have not loved enough.


Loving until it hurts has meant hurting myself. Loving until it hurts has only created pain for me. 
I'm learning to redefine what it means to hurt. For most people, hurting is: sadness, disappointment, unmet expectations, changing, giving a few dollars to someone else, giving a little (but not everything). I feel sadness that I know pain so deeply. I might feel a little bit jealous. I also might feel a little bit silly, because I created many situations that were painful because I thought that is what love should feel like.


Moving forward, I choose love that is joyful, happy, inspirational, fun, full, complete. I choose love that is accepting and without expectations. I choose love without the pain of guilt, fear, or compulsions. I choose love that feels loving towards myself.

"I can be trusted."

I was talking to my friend, Jen (not me Jen, another Jen) a while ago. She was sharing the story of her coming out. Everyday for nine months, she told someone new. I can't remember exactly what she said, or how she even said it, because as she was talking fireworks started going off in my head and a voice was shouting, "Listen! Listen!"

It went something like this:
I had to show my spirit that I would choose me over everyone else. I had to show me that I could take care of me.

I thought of the body memories and pain I experience. I have known for a long time that the pain will be there until I can show myself I will take care of and protect myself from being hurt again.

My move was big.
But one big event doesn't make you trust.
It is a series of little events; little things everyday that say, "I can be trusted."

Like Jen's story of talking to someone everyday. Everyday telling someone who she is. I know this is what I need to do, but I really don't know HOW. Or what that even looks like.

What does that look like? How do I show ME that I will take care of me?
I know that I don't allow people to hurt me like I used to. I speak up much more often. I'm learning skills so that I can communicate my needs and wants better. I'm paying attention to my own feelings SO much more.

Is there something I am missing? Does it just take time?
(Jen's story wouldn't have been quite so big to me if I was already doing what I needed to be doing... right?)

Frustration!!!
I want to do something different. I just don't know what...yet.

Giving in to the pain

Since moving, I am a lot calmer. I have a lot less anxiety. Less flashbacks. Less nightmares. The one thing that I cannot seem to get rid of, is the body memories. The physical pain with no physical explanation. I hurt. Its hard when I know there is no reason to hurt, and it still HURTS.

With flashbacks, I have learned how to go into them, stay present enough to "watch" them. (Like I'm watching a movie. Paying attention to what happens, how I feel, what thoughts and emotions stick out to me.) I get a blanket and a pillow, curl up on the floor, and go through it. There was a time when they were so intense, I would get "stuck" in them. For hours, my body would shake as if I was going through a seizure. I would be lost in the past. Reliving horrible scenes over and over, and I couldn't bring myself back to the present. That's not the case anymore.

So, last night as I was getting ready for bed, I realized that body memories are just a form of flashbacks. The key is "giving in" to them just like I have given in to the flashbacks. Its just so easy for me to push them away. Its just PAIN, and I can work through, push through, and ignore physical pain pretty easily. Since I want to get better, its time to stop ignoring it.

So I got my blanket and my pillow and curled up in front of the fireplace. I took a deep breath, and felt the pain. Immediately, the only thought in my mind was, "I held my own legs out of his way."

Some backstory:
With Larry, if I fought him or said no, he fought back, and I lost. The bishop told me a good wife keeps her husband happy. (To his credit, I didn't tell him what was happening to me. I didn't know that what Larry was doing was wrong. How could I explain it to someone else?) Larry had talked to him about his "sins", and the bishop called me in to talk to just me. It was a great conversation...

So, I stopped fighting.Out of what I thought was love, or duty, or trying to be a "good" wife... I adapted a position that brought the least amount of pain to me, and still let him do what he "needed" to do.

As I laid in front of the fireplace last night,
I felt the pain of that complete and total betrayal of myself.
I felt the pain of realizing there was no love in that experience whatsoever. Not him for me. Not me for him. And not the bishop who told me what I needed to do. Zero love.
I felt the pain of understanding that my experience was nothing like what most people experience.
Mostly, I felt the pain of betraying myself. I helped him rape me. That hurts.

I cried. For about forty-five minutes. I apologized to myself for letting him hurt me. I apologized to me for helping him hurt me. I held myself in my own arms. And then I felt that piece go away. My body relaxed. The body memory pain was gone, and I went to bed and slept soundly.

I share these things now, because three years ago when I started all of this, I was too ashamed to share with ANYONE. I didn't have the words to describe the nightmare that was my life. For nearly two years, I went through flashbacks like this one, all on my own (except for when BJ was around), and I sorted it out. It was hell. I wasn't sure I would survive. I did.

This is the kind of work I had to do to become who I am today. I had to see the truth that I couldn't see ten years ago while it was happening. I'm still working. HARD. I just don't have to do it as much or as often as I used to. I can write about one singular experience now... Last year, there were too many happening all at once and all the time, and I couldn't pick out one thing to write about.

I hope I didn't trigger anyone. If I did, talk to someone about it? I'm willing to talk any time.

Body Memories

Although things have drastically improved since my move, the one thing that will not leave me alone is the body memories. The physical pain when I know there's nothing physically wrong. It makes me feel a little crazy, but mostly, I can deal with them now. At least they don't come with the flashbacks and the completely losing my mind that used to come...

I spend a lot of time on the After the Silence boards. I first went there, because I wanted to find someone, ANYONE who had been through what I was going through and survived (at the least, and really I wanted to find people that were happy.) I realized while on those boards that most of the people there are there looking for support, but when you don't need support anymore, you stop going to those boards. I want to be there to give encouragement to people who are just starting their individual journeys.

Today, I found something that could help me.

"In order to heal from a body memory, you must do the opposite of what you want to do - you need to let your body release the memory. Just like with visual flashbacks, you will only be haunted by them while you fight them. After you release them, your body no longer feels the need to experience them.

Releasing a body memory is not fun. You must surrender to the awful feelings and allow your body to feel really bad for a little while. However, if you talk yourself through them, then they will no longer plague you. Tell yourself that you already survived the abuse, so you can survive the memory. Be loving to your body and tell it that you are sorry that it endured so much abuse.

It helps if you can connect back the source of the memory to the traumatizing event. This gives the body memory a context and helps you move past the need to continue experiencing the body memory." 

I have understood this concept, but putting in the context of body memories... it just makes sense. Stop resisting. Accept the pain. Move with it. Listen to it. When it has said its piece it will leave me alone.

Here's to the next step in the journey.

The purpose of the pain...

Yesterday, Dr West (of Zero Disease) talked about the dangers of using the healing knowledge he was teaching us. He used the example of a weightlifter. They have worked on weightlifters who had fatigued their muscles to the point, that they COULDN'T lift another ounce. After they worked on them, they could go back and lift just as much as they had at the beginning.

His question, just because they COULD lift that much again, SHOULD they?

Then he went on and talked about the wise person will not wait for the pain to return to take care of themselves. They will do the healing work he was teaching regularly enough that the pain won't return. They will let their body and muscles rest even if they seem healthy enough to go on.

This morning, it hit me, that I will continue to have pain until I learn how to take care of myself. As long as I continue to try to take care of everyone else first, as long as I push myself way past what I know is right for me and my body, as long as I keep ignoring all of the subtle signals that something is wrong - I will continue to feel this pain. No matter how much healing work I do. No matter how hard I try, if I don't learn to take care of myself, it will continue to hurt.

I have learned this lesson before. It came from a wheelchair at CFC. I kept passing out, because I was waiting for someone else to tell me I should be in the chair, or I didn't deserve to sit down, or I had to do what everyone else expected of me, or... Finally, one day, I just accepted the dang thing, and then learned how to sit down when I was feeling dizzy, and now I do pretty good taking care of me that way.