Tuesday, April 25, 2017

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?