#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?

"Don't ask me. Tell me. You're the boss." #pelvicfloorphysicaltherapy #endometriosis #PTSD

Three months ago, I had a complete hysterectomy and endometriosis excision surgery. The doctor didn't know how extensive the endometriosis was until he got in. My bladder, bowel, colon, rectum, left tube, left ovary, and uterus were all fused together in one big clump. There were several other spots of endometriosis spread throughout my pelvic and abdominal areas. It was a pretty extensive surgery, and it's taken a while to heal.

There are a lot of things that have improved since my surgery.
I no longer have pain so bad that I feel nauseated. I no longer spend a few days vomiting during my period.
I don't have a period.
The intense pain (felt like a hot poker stabbing my insides) is gone.
I don't feel the burning/urgency/painful cramping whenever my bladder is full or while peeing or after I've peed. It used to feel like I had a UTI all the time, but I don't feel that way anymore.

I still have some bowel issues that weren't there before the surgery, but since I had major surgery on my bowels, it's apparently normal. It takes time for those things to heal.
I also still feel exhausted a lot. I no longer take a nap everyday, but I feel like I still could if I had the chance.

I still have a constant aching, burning, uncomfortable pressure pain throughout my whole pelvic region. That combined with the fatigue I still have since the surgery has been discouraging. Last week, I spoke with the surgeon again. He told me I should be feeling better by now, and suggested I give physical therapy a try to see if that could help me. He also said it could help with preventing more adhesions (scar tissue) from sticking to my organs and muscles. Scar tissue can cause the organs to stick together in the same way endometriosis did. If it got bad enough, I'd have to have surgery again to fix it. Physical therapy can help break up the scar tissue and keep the organs moving in the way they should.

Pelvic floor physical therapy was not my idea of fun. It sounded AWFUL. Besides the fact that physical therapy of any kind is generally painful and difficult, I have a history of sexual abuse. I have been diagnosed with PTSD, and anything that feels anything like being sexually abused felt, triggers reactions in my brain and body. PTSD makes it hard for me to know if I am in the present (with a doctor that can help me) or in the past (with a man who is raping me). As far as my body and brain are concerned, I FEEL like I am being raped. I am in the past. I can see the things I saw then. I can hear the noises of the fan whirring above the bed, and his grunting. I can feel the pain of being raped or the suffocation of having a pillow over my face. I feel scared and alone and betrayed and disgusting and disgusted. I feel so many things that I can't come back to the present without a lot of work and usually some help.

Pelvic floor physical therapy uses both internal and external muscle manipulation. It's like a regular exam on steroids - and I have never done well with regular exams.

I was afraid to go, but I also want to feel better... Really better. I want to be able to go to work, or fishing, or horseback riding, or to sit on my couch and watch TV, and not think about being in pain. It's exhausting to be in pain, and it takes a lot of energy.  If there's a chance I don't have to live like that, I want to do whatever I can to take that chance.

Pelvic floor dysfunction can be caused by a lot of things.
Chronic pain from endometriosis can be a cause. Surgery (hysterectomy or the extensive excision) can also cause it. Sexual abuse can also be a cause.
It could also be caused by pregnancy, miscarriage, sitting too much, exercising too much, poor posture, etc.

(In other words - I have a lot of things that could cause it, and they probably all contributed to where I'm at today.)

I had my first physical therapy appointment yesterday. I was scared out of my mind. I asked Todd to come with me. I made the decision that I wasn't ready to do any kind of internal work yet. As I was filling out the paperwork before meeting with the therapist, I was trying not to cry or panic or run away.

Then I met her.
She asked me about my pain. She asked me to describe it. She asked me what has helped, what has made it worse, what other doctors and professionals have told me, and she told me it usually took a woman seeing at least seven doctors before they got to her. (I counted. I have been to eight doctors for pelvic pain. The last two were helpful. Everyone else was dismissive.)

She showed me some stretches to do. She reminded me the importance of breathing deeply (diaphragm breathing). Then she handed me a sheet and told me she liked to do both internal and extrernal work.

"Is it okay if we just start with external for now?" I asked, very timidly.

She responded, "Of course! Don't ask me. Tell me. You're the boss. It's your body - I'm just here to help you."

I breathed a sigh of relief, and gladly got on the table where she massaged my incision scars and tested to see how tight my stomach and back muscles were. She had me move in different positions as she massaged and moved different parts of me. I learned about fascia, which I was unfamiliar with before. She talked a lot about teaching my body to send new signals to my brain, because the cause of the pain was gone - but my body didn't know that yet.

I walked away feeling hopeful. I still don't want to go through the physical therapy. It still sounds awful. I still think I will have a really hard time with it, and I will probably get triggered in a way that will leave me feeling awful on more than one occasion. I also know enough about recovery and PTSD and myself to know that I can handle it... And the only way out of the pain is to go through it.

So... here I go... through pain. Twice a week for at least the next month.

It wasn't all in my head! #endometriosis #adenomyosis

It's done. Yesterday I had my uterus, cervix, Fallopian tubes, and left ovary removed. This morning I am laying in a hospital bed waiting for the nurse to let me get up and move around. Then I will be waiting for the doctor to give me the okay to go home.

I haven't talked to the doctor yet - my surgery was schedule to be an hour and a half. It took him three hours. I had endometriosis.

My uterus, colon, left Fallopian tube, and left ovary were all covered in endometriosis adhesions and twisted and fused together. As the doctor was telling Todd all that I had cut out, Todd's main thought was, "No wonder she was in so much pain."

I went to several doctors who all told me my pain was psychosomatic. I really thought it was in my head, and I was worried I'd get into surgery and the doctor would find nothing wrong with me.

What a relief to know there was disease, and the surgeon cut it out, so hopefully once I recover from the pain of surgery, there will be no more pain.

The pain has changed a little with surgery, but it's no worse than what I was living with almost everyday. (There's an incision in my belly button, and that hurts. The other three incisions don't hurt at all.)

The other cool thing about this experience: I was able to talk about PTSD and anxiety, AND I was able to ask for help. As I was coming out of anesthesia, I was in pain and felt panicked. I was able to tell the nurse, "I have PTSD from being raped, and I'm having a hard time right now. Can you talk to me to help me stay here in the present. My brain thinks I'm being raped again."

She brought me a pillow to hug and then talked to me. She asked me about where I live and what I do for a living and told me stories about herself. It didn't take too long for me to get grounded and be okay enough.

I'm really excited to see evidence of how much better I am than I was just a year ago.

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.

#ObamaCare It actually helped me.

Several years ago, I wrote about the Affordal Healthcare Act. It had just passed, I didn't know how it would affect me. I was aware that I was the target market - the person that was middle class, without employer insurance, and couldn't afford to pay for it myself.

Some insurance companies have considered me uninsurable. Four years ago, I looked at buying insurance privately and found one company willing to cover me for catastrophic only: $800/month. That was just me, and that didn't cover any basic medical care. I decided if I was diagnosed with cancer or in a car accident, I would just have to accept I might not get care. And I definitely couldn't afford basic healthcare, so I just didn't go to doctors.

Life happened. I got insurance by being BJ's domestic partner through his work. (I should have written about the panic of signing that paper, but I didn't. Maybe I'll do an entry on it soon.) That helped a ton. I went to the dentist, got work done, had oral surgery, and even thought about getting a physical done. (Never happened. Not worth the emotional stress it caused.)

Then in April, he decided to leave his job. He wanted the time to work on his own business, and the only reason he stayed was because they offered him health insurance. They fired their CEO, and the new CEO decided that cutting insurance to part time employees would save them money. So, we went looking for new insurance.

"Obama Care" was in effect, and there was a public market place to find insurance.
Going through Utah, we couldn't get insured together, because we are not legally married. Utah doesn't have domestic partner laws, but the federal government does. Through healthcare.gov, we were able to get on a plan together.

Because pre-existing conditions no longer exist, and no medical exam needed to happen to get insurance, I found insurance for just me, fairly good coverage for $180/month. (MUCH cheaper than $800/month, and it covers well-check visits and has a deductible of $2000. I will probably never hit that, but if I did... $2000 is a doable amount for me to pay in a year.)

Based on my 2013 income, I qualified for some subsidies. Based on my projected 2014 income, I would have had to pay it all back, so I didn't use it. 

Our plan together is $350/month. Same coverage as the plan I found on my own, but a family deductible of $4000.

I don't know what will happen in the future. In the present, I have health insurance, and I am again considering getting a physical done. I've even looked up doctors covered by my insurance and called a few to "interview" them. (Ain't nobody sticking their hand up there if I don't feel VERY comfortable before hand.)

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.

I've been made aware I have a kidney/I think funny

I got to visit with a very nice doctor today.
It turns out I have a kidney infection. I pretty much knew that before I met with the nice man. Two weeks ago, I couldn't have told you where exactly the kidney is located. I sure could now.

Sitting in the doctor's office, I felt anxious.
I was aware of one source: They expect me to lay down on my back and let Dr. Dude touch me. That causes some panic.

I was not aware of the rest of it until he started asking me questions.



Pain here? Yes.
Pain there? Yes.
Nausea? Yes.
Fever? Yes.
Energy level? I just want to sit on the couch and not move.
Have you done that? No.
You've had these symptoms for a week? Yes. Yes I have. 

What was going through my head as he was asking?
"I've already peed in the cup. He KNOWS there's nothing wrong with me. He thinks I'm being dramatic, I'm weak, I can't handle a little bit of normal pain. He's wondering why I even came here..."

And then he told me I have a kidney infection. The urine sample let him know I had an infection. It turns out he asked the other questions NOT because he thought I was weak, but because he wanted to know how bad the infection was. He wanted to know how much antibiotics I would need to get rid of it.

Oh. I think funny.

I was afraid of being a hypochondriac. I was afraid I was being weak - that I could have just taken care of this myself. This isn't the first time I've had to say to myself (or others have had to say to me):

"You're so afraid of being THAT extreme that you are the other extreme." 

You'd think I'd be used to this kind of realization, but I'm not. It still catches me off guard and strikes me as funny... One day. One day, I'll find the middle and I'll be comfortable there.

***Unrelated except for that it happened at the doctor's office:
They put me on the scale today. First time I've been on a scale in several years. Interesting to note, my weight hasn't changed. It is still right where it was when the dietitian gave me the thumbs up. There is a remnant of the voice that says, "That's not the right number!" (There was a time when it wouldn't have mattered WHAT the number was, it would have been too big and too small all at the same time.) That voice is quieter today. Much quieter, and far less persistent than it used to be. Mostly, I don't even care. It really has become just another number that doesn't mean anything to me. Which is awesome.

Getting Political

People say President Obama is making history today. Some people say this change has needed to come for so long. Some people are saying this is the end of the constitution.

I don't know enough to really form an opinion. I don't like the idea of the government taking control of anything more than is absolutely necessary.

Social Security has helped a lot of people. Still, there isn't money to continue making the social security payments they have been making... So, now the government is going to try to give everyone healthcare? It just sounds fishy to me.

I happen to be one of the people that can't get insurance under the current system. I have been "uninsurable" for most of my life. There was a short period of time that I could get private insurance. They asked for $800/month, and they didn't cover the few expenses I had. It wasn't worth paying for, so we canceled it. Since then, I have been denied insurance again.

Both Dann and I work for small companies that won't (or can't) pay for insurance.
President Obama thinks he can take care of me. At what cost? Will it really help me? If they require me to buy health insurance, but don't change the exploitative nature of the health insurance companies, that will only hurt me and help the big corporations.

I love the idea of everyone helping everyone. I love the idea of all of us taking care of each other. I love the idea of everyone giving what they can (which means that some will have more to give than others). I hate the idea of forcing people to do anything. I hate the idea of anyone telling me I have to take care of others. I hate the idea of anyone telling others they have to take care of me.

Have we become so stupid, so selfish, so lost that we require the government to tell us how to take care of ourselves and everyone else?

I would like to read the bill. I would like to know what changes will really be happening. I would like to know how this will really effect people like me. People like my CFC friends. People like the consumers at CUCIL. People like my parents and grandparents. The people in control of the government today. The people who will take control in the future.

Since the thing is more than a thousand pages of legal-sounding-mumbo-jumbo, I doubt I will ever take the time. I guess I will just wait and see how it is going to effect me and everyone else.