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.


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?

Monday, November 7, 2016

Surgery #2 - maybe this one will do the trick? #Endometriosis #pelvicpain

So... I'm back on the couch.
I had a hysterectomy along endometriosis excision surgery in December 2015. Recovery didn't go quite like I wanted. I did get immediate relief from some symptoms, but I was also in pain.

I tried pelvic floor physical therapy. I didn't notice any improvement in my pain. I learned that I don't have constantly tight muscles. I am capable of relaxing and tensing. I learned my core strength could be better. She worked on breaking up scar tissue from the surgery. Two sessions a month for six months, and I didn't notice any improvement.

Physical therapy was incredibly triggering. I felt low and sad and discouraged - partially because I was still in pain, partially because I kept being reminded of all the hell I'd been through. I started having nightmares and sleepless nights again. I felt anxious and unsafe. I felt despair like I hadn't felt in a long time.

I was still doing things I love - some fishing, spending time with Todd's kids and grandkids, spending time with my siblings and my niece and nephew, spending time outside with the horses, going camping and on other adventures with Todd, but still... it's hard to enjoy life when you're in constant pain.

I tried injections - steroid injections into the vaginal wall near my bladder where all my pain was coming from. Twice. It was painful and upsetting, and it didn't help.

When nothing else worked, the surgeon decided to go back and do another laproscopic surgery.
Four small incisions. An abdomen full of carbon dioxide (so they can look around inside). He found a lot of scar tissue. Adhesions that had fused my bowels to the vaginal wall and bladder. He told Todd he was positive he had found the source of my pain.

That was last week. (It will be a week tomorrow.)
I'm still in pain. Incisions hurt and inside hurts and I'm tired and just want to sleep, but I'm also SO SICK of being on the couch.

Sitting on the couch has given me a chance to think and read and now write.
Consider this my quick update that is boring to read... but if you're dealing with endo or adhesions, here's my advice:

Check out the Center for Endometriosis Care online. Find a doctor that specializes in endometriosis. My doctor was Jeff Arrington in Ogden, Utah. Since I'm in Utah, it was very convenient to have him only a few hours away.
Check out Nancy's Endometriosis Nook on Facebook. They have spent a lot of time researching and vetting doctors who are compassionate and knowledgeable.
Don't give up. Don't stop fighting for your own care. It's taken me years to get a diagnosis, and then another two years to get the two different surgeries.

I'm not pain free yet, but I hope to be very VERY soon.

Wednesday, August 3, 2016

Writing just to be writing #PTSDrecovery #EndoRecovery

I haven't been blogging much.
For a while it was because life was good, and I didn't feel like writing.
Then I had surgery, and I thought life would be good and it wasn't as good as I wanted, and I was a little ashamed at how sad and discouraged I felt.

And then a few days ago, I sat down and wrote about what I was feeling: all of it. (It turns out there is a technical therapeautic term for feeling all of it at the same time, but I have forgotten it already, so I will have to call Amanda back and ask again. Which is actually a very good thing, because talking to her is helpful.)

In therapy (psychotherapy, just to differentiate the ten billion different kinds I feel like I am going to), I didn't feel like working with the horses. So, my human therapist and I sat in camp chairs and watched the horse therapists play. It was actually nice for me.

She mentioned how traumatic some of the procedures I have been through would be for a person with zero trauma/sexual abuse history, and I have a lot of that history. I told her I felt like I'd forgotten many of the skills I'd learned, so she helped me make a list.

I had already set the goal to ride Sunny (bareback) for five minutes a day. No more, because my body really does get very painful, but to practice being on horseback and outside would be a good thing for my soul.

She also suggested writing. Since it used to be so helpful to just get my thoughts out, and to get them out publicly, I decided I would like to write in this blog more.

Ask for help. Let people comfort me. And don't apologize for any of the above.

I also know resting is helpful. If I overdo it, it takes me days to recover physically, and then I get so discouraged, it takes me weeks to recover mentally. I decided to do a Shutterfly book for Todd's dad. That way, I can lay on the couch with my ice packs and still be doing something that Todd's dad might appreciate.

It also surprised me that visiting Todd's dad was incredibly helpful to me. Todd's mom passed away in March. I can't imagine the grief his dad is experiencing - and at the same time he expects himself to get up and be fine. (He says a lot of the things I say to myself, and I decided they're not very helpful to either one of us.) We spent four hours just sitting on the couch. Sometimes he cried. Sometimes I cried. Sometimes we told jokes and silly stories. We pulled out some of Todd's mom's things that she had collected and I felt like it was just okay to be sad and tired and present in my sadness and my tiredness.

I'm guessing none of this is very interesting for anyone else to read - but maybe if I just start writing regularly, I'll come up with some brilliant thoughts every now and then.

Tuesday, July 26, 2016

It's all true. #reallife #PTSDrecovery #endometriosis #depression

Yesterday, I went fishing. I posted a picture on Facebook of a beautiful cutthroat trout I caught. The picture shows his impressive coloring and length. The picture doesn't show much of my face, because despite the fact that I had just caught a 26" cut throat trout in a small lake in some of the most beautiful country there is, I had just  been fighting back tears, because I was tired and discouraged and depressed.

We had hiked a mile in to the lake, and it took everything I had to keep trudging up and down the hill. I'd cried before we left, because I felt discouraged that I wasn't excited for this great day of enjoying the beautiful outdoors. All I really wanted to do was go back to bed.

I wanted to enjoy fishing, but I was in pain, and that pain has me so discouraged and depressed. It's hard to enjoy fishing or hiking when it feels like I have a hot poker stabbing my bladder, which causes weird cramping to radiate down my legs, up my back and stomach, and I generally feel unwell and tired.

A few weeks before that, I posted a picture of myself on Sunny. I rode him around our two acre pasture for less than twenty minutes, and then had to get off because I was in enough pain that I was near tears and it wasn't fun... and this is my horse, and I love this horse, but it wasn't fun riding him. I only got twenty minutes in and my body decided that was enough. Again - hot poker stabbing my bladder which is extra triggered by sitting in a saddle (or on any hard surface). The muscles get tight and then I'm sore all over.

This week my blood pressure has randomly decided to drop to unhealthy lows. It could be medications I am on. It could just be chronic pain (it turns out that does funny things to the brain and the body). It could be something else completely unrelated, but it means I have spent a lot of time laying down because I feel shitty.

I also work at a job where I can do some of what I need to do while laying down on my couch (as long as I can focus on a computer screen, which wasn't possible every day last week). When I can't work, I have a great partner who takes over and does both of our jobs - and he's had to do that a lot over the last seven months. I'm so lucky. I don't know what I would do if I just had to show up for work anyway - I have worked when I was sick. I remember what it was like to lay on the bathroom floor, dry heaving and vomiting, and then trying to go back to my desk as if I was fine. This new lifestyle is much better.

I had pretty major surgery seven months ago - it turns out that can take a long time to recover from. I have the money and the time to go to doctors, specialists, physical therapists, more doctors, and psychotherapists to help me get through all of this. I also have an amazing partner who says he'd bring me flowers if he thought I'd appreciate them. (He bought me a new fly line. As soon as I'm excited to fish again, that's be way better than flowers.) I am so lucky. I'm in debt now - which I wasn't at the beginning of the year, but I paid cash for the first couple thousand dollars. I have insurance which thus far (just this year) has covered $49,000 worth of hospital/doctor bills. I have no idea what I would have done without insurance and money.

I have family who care. Todd's sister hasn't been real healthy either (cancer followed by Myesthenia Gravis, if you don't know what it is, feel free to look it up. I didn't know until she educated me. For her, it mostly causes her a lot of pain and fatigue.), so we had a movie day where we sat and ate popcorn and fell asleep to the movie Zootopia.

My dad has been dealing with chronic pain for way WAY too long, so he's been giving me advice and support. And the rest of the family doesn't know what to do, but I feel supported, so that's good.

I am regularly using Valium suppositories - which aren't supposed to be absorbed into the blood stream - they're just supposed to be absorbed into the pelvic floor muscles to help relax them. I feel embarrassed to talk about taking this medication - as if I should be ashamed of it. I feel both glad it helps and a little upset that it seems to be causing me other issues: like dizziness and low blood pressure and possibly depressive symptoms.

I spend two hours a week with a physical therapist's hand in my vagina. She's stretching muscles, breaking up scar tissue, trying to get my bladder and bowels and everything to move around like it's supposed to. It hurts like hell - it is also super triggering. I no longer cry or freak out, but I also feel like that doesn't necessarily mean I'm okay with it all. It's a constant reminder of what I've been through. I can't escape the pain or the memories, because they are always there. Which sucks. While PTSD has not taken over my life now like it once did, it is now a constant companion again. I hate that. It makes me sad and angry, and afraid. My present life is good, and yet I can't get away from the life that I only barely survived once. I never EVER wanted to say that PTSD was something I had to deal with again, but I am.

I'm having nightmares a lot. I wake up crying - afraid that the life I have built with Todd has somehow been taken away and I am back with Larry trying to make things work - or trying to survive the hell that marriage to him was, but in my nightmares, now I remember what it's like to have a supportive partner and a home I love and my dog and cat and horses, and I wake up sobbing because I feel so sad for the girl that survived because she didn't know there was anything better.

I have a great therapist, and we spend a lot of time sitting in her office while I cry and she tells me that she is sad for what I've been through. A few months ago, she sent me this meme:

"I am strong, but I am tired."
My therapist's way of validating all of the work I have done and am doing, while also validating that it's okay to be tired too.

I had to have bowels, rectum, colon, and a bunch of other internal structures completely reconstructed because the endometriosis lesions and adhesion's had damaged so much of my body. I had at least nine doctors dismiss my pain because it was just caused by sexual abuse. If it weren't for all of the abuse I had endured, maybe someone would have caught the endometriosis years earlier, and the surgery would have been much less invasive. (And recovery much easier.) I'm angry at the men that abused me. I'm angry at the doctors that dismissed me. I'm angry at the system that failed me. For now, that anger motivates me to get up and go to the next appointment, try the next medication, try the next supplement, do the next exercise (physical as well as therapeutic), or whatever else I need to try to make my life what I want it to be. Sometimes my anger also motivates me to swear and throw things, but nothing breakable - at least not yet.

I'm discouraged. I'd thought I'd feel better by now. I thought surgery would have healed most of it, and five months of physical therapy would have healed the rest. I didn't plan on the extra trips back to the doctor or to the specialists or the kidney stones. I thought this summer would be a lot more fun, but it's been a lot of trying really hard to enjoy things I used to enjoy, but really just wanting to take a nap.

Last week, I tried what the doctor thought would be a for sure fix - steroids and numbing injections directly into the vaginal wall (where it meets the bladder wall). It numbed things for about four hours, except it felt like I was being stabbed with a needle when I peed. (Luckily that went away at about the same time the numbing went away, so... I don't know what all of that means.)

I'm depressed. I know what depression feels like - it could be a menopausal symptom. I did have my uterus, cervix, both tubes, and an ovary removed. I imagine that can mess with hormones enough to make me depressed. I also imagine everything I'm going through physically and mentally could make me depressed too. Whatever is causing it, I have it. Which also means I now have to be very aware that I don't have an appetite and I have to eat anyway. (For some people depression makes them eat more. I am not one of those people.)

I'm also fascinated. I know a lot about my body and medications and side effects and doses that I did not know last year. Science and nature are all very fascinating, and the art of treating people like me is amazing.

On Facebook, I spend most of my time posting about my dog. (Did I tell you about our foster dog?) Or my cat. Or the horses. Or the flowers blooming in the yard. Or my niece and nephew or Todd's grandkids. Or fishing. I love all of those things, and I want to share those things.

Me with my niece and nephew.
They're both a lot bigger now -
this was taken at Christmas time.

Grandpa Todd with me and the newest grandson.
(There will be another new grandson in a few more weeks.)

Our foster dog - which we plan to adopt as soon as they let us.
Also, my cat, who hasn't decided how she feels about the dog yet.

Grandpa and I with the newest new grandson at the time. He only got to be the youngest for about three weeks.

There's not pictures where I'm not smiling,
because camera! And I guess I really do prefer
sugar coating things and making them look
happy, but here's to real life.
And sometimes life hurts.
 I also feel tired. I'm in pain. And I'm so very very tired. I don't want to be a drain, and I also want to be honest. I don't like pretending everything is wonderful when it isn't. I'd rather be real.

I have heard one can't feel contradicting emotions at the same time. That is false. I am happy and sad. I am grateful and grumpy. I am so angry and hurt, and I have compassion for those I'm angry at. I am hopeful and afraid. I am discouraged and have faith. I'm in pain and I still rode the horse and caught a beautiful fish. Really - I don't think it gets more real life than that.

So, here's to not sugar coating life, and just showing how it is. It's beautiful and painful and worth living.

Wednesday, April 6, 2016

Writing under the influence. #feelthebern

I just finished my fourth oral surgery in four years, and going into it I was cranky. And I'm also aware (again) of how lucky I am.

There was a time when I didn't have money or insurance and when a tooth became infected, I just had to soldier through. I eventually had it pulled while I was awake and felt it, and it hurt and I felt panicked.

Back then, there was no talk of implants, because there was no chance I could pay for it. I couldn't really afford to have the tooth pulled, so I signed up for a care credit account (29% interest, but at least I could get the painful tooth out).

Today, I the put me under with general anesthesia. The extracted the tooth, did a bone graft and put in an implant. I felt nothing, and didn't have to deal with the panic of dentists laying me back and working on me. (That triggers PTSD for me. It's not the pain, but the laying there with stuff in my mouth and feeling really vulnerable.) I didn't have to deal with any of it - I just slept through it.

I don't expect this recovery to take very long, but still - I get to take as many days off work as I need. And I will rest comfortably on my couch in a home I love. (Even if I have no desire to spend another minute on that couch...seriously? Four oral surgeries, plus hysterectomy/endometriosis excision in four years! I'm done with all of this recovering on the couch crap!)

Once again, there is a lot more options available to those of us who have money and insurance. I'm very grateful that right now, I am one of the people who has options. I want to live in a place where everyone can get help, healthcare, and comfort when they need it.

Friday, March 25, 2016

"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.

Thursday, March 3, 2016

Three months Post Op - I thought I'd be feeling better by now. #Endometriosis

It's been three months since I had surgery. I was amazed at how much better I felt after surgery.

And then I started moving around more.

Three weeks ago, we had a tradeshow to go to. I know I overdid it. There were a lot of things to carry and set up, and it was a lot of work. It had to be done. Ever since then, I have been in enough pain that I have yet to feel like doing much more than what I have to do. I have yet to work a full week, so I'm not even doing what I have to do yet.

Todd went fishing this morning, and I didn't even think about going because I didn't want to go.
I haven't felt much like fishing for a year. I haven't felt like riding in more than that. (I also haven't ridden much because Todd's horse has been lame, so if I go riding, it's by myself. But to be honest, I haven't even felt like doing that, because it hurt too much.)

But before surgery it felt like I could just ignore the pain if I had to... push through it... And pushing through it didn't make things worse like it seems to now.

I just thought I'd feel better. I just thought that by now I'd want to be outside with the horses again or starting to work on my garden or fishing... or if not fishing, hiking and taking pictures (because the water is still a little cold for me to think fishing is fun, even if I felt amazing.)

Today, I just feel discouraged.

Saturday, December 5, 2015

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.

Monday, November 23, 2015

Loaded Words: Gratitude

"What are you grateful for?"
It seems like an innocent and helpful question. Nobody means harm when they ask it - however the question fills me with sadness and maybe a little anger. 

At the very worst time in my life, a time that was so dark and so painful, I am impressed with myself for living through it, I got asked that question a lot. 

I always came up with something: some "tender mercy" that made other people feel better about me or my life. 

The reality for me was, it felt like I was digging through three tons of crap to find a couple of M&M's The digging was awful. It stunk. It was hard work. I had to look so hard for the stupid little tiny pieces of chocolate, but once I'd found the M&M's, was I supposed to eat them? I didn't want them. They didn't make ME feel any better, but people around me sometimes seemed to pretend like these crap-covered chocolate pieces were a ten course meal. I was so blessed and so lucky to find them. 

My life was too painful, and I lacked the ability or the awareness to really express it at the time, but it felt awful. I felt like I was being masked over, asked to hide or disappear. Instead of feeling loved or supported, I felt very very alone. 

Todd and I have been talking about ways to bring mindfulness to our meals. He had the idea to list things we are grateful for before we eat. It sounded like a good idea, and I was all for it. And then he asked me what I was grateful for as we sat down to eat dinner, and I just cried. 

It felt like he was asking me to pretend and hide: to disappear and only show him what was acceptable and not what IS. 

In my tears, I could easily recognize my feelings are not based in the present. I have much to be grateful for, and I am very grateful for a lot. Sometimes, I still just need to cry for what was. 

As a survivor of abuse and PTSD, eating disorder, major depression and anxiety, that question did not offer me relief or hope. It offered the people around me relief and hope. It gave them a chance to escape my reality by forcing me to comfort them. I know they meant well, but it really hurt. 

It would have meant so much more for people to ask me about what I wanted to tell them, because most of the time I would have chosen to say sugar-coated sweet "positive" things to protect them. It meant a ton to me when people let me share my pain with them without expecting me to sugar coat it with gratitude s and "tender mercies".

Thursday, November 19, 2015

I took manure and leaves and I made dirt!

This might sound silly, but I am super proud of my compost pile.

My first wheelbarrow full of manure and our three horses

When we moved in in March, I knew nothing about composting (except that I wanted to do it). I got a wheel barrow and a shovel, and started gathering manure and leaves. I started researching and reading to learn about something I had never even thought about before.

The biggest it has been was 20 feet wide, 10 feet long, and 5 feet high. It's about a third of that size now, since composting worked, and I spread the compost on our flowers and garden area. (Hopefully we can get things to grow faster than the deer and rabbits eat it. This year, that wasn't the case, but the soil was not nearly as good as it's going to be now that I have beautiful compost on it.)

Guys. I took manure and leaves and some vegetable scraps, and I made dirt! 
I feel proud. I also feel silly that I feel proud. And I still feel proud.

Friday, November 13, 2015

Preparing for surgery: I feel afraid. #Endometriosis #PTSD

I'm getting ready for surgery in three weeks. It's stressing me a little bit, but the things that stress me are not the same things I have heard others worry about.

I'm afraid of laying on a table half naked while they put me under the anesthesia. That sounds like a perfect recipe for flashbacks and panic attacks. I talked with my surgeon and he told me they would do everything they could to keep me comfortable until I'm out. I also know from experience that even if I feel panicked, once they put the IV in, I'm out pretty quick.

I'm afraid of waking up half naked. I'm afraid of feeling afraid or triggered and being too drugged or in too much pain to be able to think through (and get past) the panic.

I'm afraid of staying in the hospital and not being able to wear pants and having people coming in to examine me. I'm afraid of panic and feeling afraid and alone and being unable to tell anyone whats going on. When I get panicked or have flashbacks, I can't talk. I get paralyzed.

Mostly, I'm afraid of wanting Todd's help through my recovery. They tell me I will be pretty much completely down for two weeks. I won't be able to lift anything for six to eight weeks. That means I will need help. This summer I had my wisdom teeth out. I tried to convince myself then that I didn't need or want help, but I'd wished I had done it differently.

I talked to Todd and told him I wanted his help, and I asked him to plan on being home for at least a few days after I get home. Just in case I need help getting food or whatever else I might need.

I'm still afraid that he will find somewhere else he would rather be. But more than that, I'm afraid I will tell him that I don't need his help. I feel like I shouldn't ask him to stay home with me, but I should tell him he can go fishing or go play with the grand kids or... anything really... but I want his help. I want him here with me.

He tells me to just trust him. Let him show me that he'll be here. Let him show me that he loves me, and not just when we are working together or fishing or riding. He says he also loves me when I'm tired and sick and need/want help.

Wednesday, November 11, 2015

#Endometriosis. Is it okay that I admit it hurts?

Tonight I stayed home from my fly fishing club meeting. Last night I missed rehearsal. I could have gone to both, but I was in pain and felt nauseated and hated the idea of even driving across town.

In the past, I would have gone. No one would have known I felt bad - maybe someone might have noticed my pale face or the cold sweat, but probably not. I am pretty good at faking it and pushing through a lot of pain. I have been pretty proud of myself for my ability to push through.

And. I'm tired of pushing through pain. It's exhausting, so I stayed home on my couch in front of the fireplace cuddled up with my cat.

I tell you all this, mostly because I'm trying to keep myself from telling myself horrible things. Somewhere in the back of my head, I hear a voice telling me I'm lazy and weak. I'm scheduled to have surgery in three weeks. Part of me is excited and hopeful that the surgery will make me feel better (after I feel worse for a while). The other part of me ridiculously believes that surgery won't help because the pain is all in my head. I'm just weak and I need to push harder, because the pain isn't real.

It's funny that I think it's not real. I finally have doctors giving me diagnoses and telling me that surgery will help. (I have suspected adenomyosis and endometriosis. My uterus is enlarged and out of position, and my cervix is tilted and twisted. I'm having a hysterectomy and they will be cutting out any endometriosis adhesion's as well.)

I feel ashamed that I stayed home on my couch. I don't want anyone to know. I don't want anyone to feel sorry for me, or to express concern or sympathy for me. The shame and the fear are getting in the way of what I want. I want to feel supported.

This blog is a nice place to start doing something a tiny bit different.
I'm in pain. Sometimes I cry because it hurts. I feel exhausted trying to focus on anything besides the pain. It's not horrible all the time, but it hurts all the time. I sometimes get really depressed and discouraged, because its hard to enjoy anything when I'm in pain. I love being a part of the orchestra. I love fishing and being with the horses and working in the house, but sometimes I can't enjoy any of those things.

Even as I write this, I feel ashamed. If anyone knows that I cry or that I feel pain, they will think I'm weak. Because my pain is in my pelvic region, everyone will think I'm gross. Maybe I'm overly sensitive, and other people don't complain or cry even though maybe they feel the same thing I do.