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.