Thursday, July 20, 2017

Scary Movies Help My PTSD

a photo of a white femme in a white dress with tattoos on her arm holding an ax; a blue old timey overlay with black text: "Scary Movies Help My PTSD"

Triggers discussed in this post include abuse, neglect, animal abuse, and death. If you need to avoid these triggers, please scroll down to the next picture.

Growing up with abuse & neglect has long lasting effects, including horrible fucking nightmares. Waking up in PTSD mode fearing an abuser and wanting to protect my babies is not something I'd recommend. Ever.

I woke up from a nightmare this morning. While mostly based in fiction, it was very real and rooted in a lot of real abuse I went through.

I was living with Mother again. They told me one of the piggies was dead. In reality, they moved him to the basement & were starving him in a clear tote. I yelled and screamed at them, crying and holding him. I took him and we went to the pet store and got things he needed - and then I moved all pets into my room and locked us in.

It reminds me of how she would adopt animals, make me their keeper, and brag about what a good person she was to take them in when she did almost nothing for them. I mean, fuck, she made me dissect one of my hamsters 'for science' after Teddy died from cancer. No, let's not take Teddy to the vet and be humane, but watch her endure horrible pain as a tumor grows and impedes her ability to function and then kills her. Let's not have a kind little moment for Teddy, but cut her open to 'explore' what cancer looks like.

I can still see, hear, and smell it all. I cried the whole time but she made me go through with it. I held Teddy afterward for as long as I could, crying and apologizing for everything before she made me just toss Teddy in the trash.

There are so many similar stories in my past - Mother forcing me to do things I would never do, letting pets 'go' outside instead of rehoming them once she got tired of them, etc. There's the hypocrisy, too, of donating to organizations to save some animals while you neglect, abuse, and abandon others.

If nothing else so far has told you what an evil person Mother is, I think that can highlight it pretty fucking well. There has to be a special place in hell for abusers like this. I wish I believed in comeuppance happening, but I doubt it.

It's so bad I didn't want to get up and take my meds cause the piggies would be out of my sight for a few minutes. I finally did so, but only because my pain was overriding the fear and hypervigilance that comes with PTSD.

Jaq was the piggie in question, probably cause he recently had an infection so I've been extra worried about him anyway. He was very patient with me needing snuggles this morning, as was Gussy. I'm just grateful they know when something is wrong and when I need extra love.

photo of a red wine bottle lying down on a table with the neck facing the camera
It's too bad drinking gives me migraines lately cause fuck
It's really hard to come down from all that.

One of the trickiest things is that I simply can't stop everything I need to do because of PTSD. It's certainly easier to practice self-care now that I work for myself, but still. 

I know this was a nightmare. I know it wasn't real. It felt very real, though, and was related to such gross things I've experienced. Coping afterward is hard, partially because I don't know how to put into words what has happened.

My reaction, once I was able to calm down just a little bit, was to put on a scary movie.

I tend to watch scary things often. I never really caught on before to why that may be, but I think it helps my PTSD.

It's no secret that I've always liked scary movies. I watched Child's Play and Tales From the Crypt as a child - they were some of my favorites.

Now that I'm analyzing it, I wonder if part of my interest in scary things is because it's almost like a return to normal. I haven't been chased by a murderous doll or anything like that, but certainly feel at home in the fear that others avoid in avoiding these things.

In peeps with PTSD like me, our brains are kind of always set to 'on.' We're prepared to face anything because of what we've been through. There are significant changes in the brain, for example. The hippocampus, which helps with memory retention, is smaller in size than in people without the condition. This also means it can't help control how we access the memories, which helps cause flashbacks.

The amygdala controls our fear, stress, and emotions. Thanks to PTSD, that area becomes hyperactive and even enlarged. Combined with how the condition affects the prefrontal cortex, This means my emotional responses to things aren't always what they should be. Most importantly, though, my brain is constantly in a state of fear or stress. It's part of why I think I do really well with high-pressure deadline type situations, for example. 

Basically, PTSD is a giant gateway to living in fear and stress - much like the situations that have caused the condition in the first place. It also keeps me in a state of hypervigilance. 

I've mentioned that word a bit, but basically what it means is I'm ready for action. I'm ready to defend myself or fight for someone else or punch an attacker, etc. It's like having a ton of potential energy, but only for defense.

I think this is part of why I like scary movies though. 

T avoids scary movies. He doesn't like the jumps or gore or any of it. For me, though, anticipating those things helps to utilize my PTSD in a positive way. That doesn't guarantee that I won't face an issue after watching horror movies all day, but my mind is more focused on the puzzle aspect than the scary one if that makes sense. It's more about how horror theory will play out or what scares are used or the plot line.

From an emotional side, though, it also uses my fear reactions for some sort of enjoyment. I do so much better after watching scary movies or shows than I do even in therapy. The fear gets out through the emotions we feel as we watch these things.

It's a weird therapeutic use of horror, but it works for me.

Wednesday, July 19, 2017

Cure Evangelism and Crummy Medical Advice

photo of people's legs as they stand in line for coffee; the upper corners have orange on them diagonally and the bottom has an orange line across it; in the middle of the pic in bold white middle-aligned text: "Cure Evangelism and Crummy Medical Advice"

I really love being on Twitter. It's been the easiest way to find my people - usually disability rights peeps who are also a part of the LGBTQIA+ community.

Sometimes it can really suck butts, though.

Many people don't understand how they have privilege despite being a part of a marginalized group. The lack of tone in text can confuse people, especially when trying to decide if someone is being hostile or merely assertive. There are the trolls who treat people awfully simply because they can, too.

The worst people, in my opinion, are those who mean well but cause harm anyway. As a society, having conversations about intent versus impact can be helpful here. 

A subset of this group practices what is called Cure Evangelism, or giving unsolicited and unwanted medical advice.

Lately, those of us who do disability justice or illness awareness work have been bombarded by tweets or messages or even emails trying to sell us snake oil, tell us how to 'heal' ourselves, or similar things. This often happens after something we've said about ableism or health goes somewhat viral because we're not allowed to have nice things.

Well, that and arrogance masking itself as sympathy. I mean, I have a team of nearly a dozen doctors working with me - some of the top doctors in the United States - and y'all think eating more yogurt is going to do the trick.

dark starry background with the white text "how about NO"

Anyway, here are some ableist gems:
  • "Who gave disabled people access to the internet?" (literal quote)
  • "I'm gonna fake being disabled and start a gofundme" (literal quote)
  • "Get fucking cancer" (literal quote)
  • "You're too young to be disabled"
  • "Disabled people are nature's way of thinning the herd"
  • "You're not disabled - you're differently abled/special needs!"

And the Cure Evanglist kinds:
  • "Literally every single body can process plants. You need to go vegan like me and you'll be cured."
  • "Veganism is accessible and cures a lot - you just need to try it!"
  • "No one actually needs to be gluten free - it's all a trend and probably making you worse"
  • "My [weirdly related person] had that and they ate two raisins and now they're fine"
  • "If you just did yoga more..."
  • "Your medicine is what is causing you to be sick - stop relying on Big Pharma!"
  • "If you stop relying on your wheelchair, you'll be able to walk."
  • "You're never going to get better being so negative all the time"
  • "You just need to focus on the positive - I mean, you're alive, right??"

I could go on and on. I've seen so much - and then the responses once we stand up for ourselves bring in racism, sexism, and other forms of bigotry, too, reminding us that discrimination relies on discrimination.

What are some pieces of bad 'advice' you've gotten?

Monday, July 17, 2017

Upcoming: SJIA Family Education Day at Cincinnati Children's Clinic Saturday, July 22nd

I was hoping to head out to Cincinnati at the end of this week for an amazing event. Because of some health stuff, I'm having to stick at home... which sucks because this event is SO important.

The SJIA Foundation was started by parents of an SJIA patient to work on improving information, education, and care for SJIA/Still's patients.

On Saturday, July 22, they have an awesome event that brings together parents, adult patients, providers, and more to discuss and learn more about SJIA and other autoinflammatory conditions.

Make sure to check out the schedule, featuring awesome presentations from some of the coolest SJIA parents AND doctors (including Dr. Alexei Grom!).

Sunday, July 16, 2017

WEGO Health Activist Awards: I'm Nominated

purple box-shaped graphic with a light blue scalloped line inside surrounding a B&W picture of a femme writing in a notebook with a pen; over the photo says 'WEGO Health Activist Awards: I'm Nominated' in yellow and the bottom of the photo says 'not standing still's disease' in white text

I am excited to announce that I have been nominated for a ton of categories in the 6th Annual WEGO Health Awards - Best Kept Secret, Patient Leader Hero, Best in Show: Blog, and Advocating for Another.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities - but often do so without recognition.

I'll be honest - I'm not sure who y'all are who nominated me, but you're beautiful. It's been a rough couple of years and I'm not always sure anyone is listening, watching, or paying attention to the work I'm doing. Don't get me wrong - I'm not doing it for accolades, but it's nice to get a pat on the back once in a while at the very least.

purple-tinted photo of a person's hand giving a thumbs up on the right; on the left, a golden outlined purple text box says "WEGOHealth Awards" with smaller orange text below saying "endorse me today!"

This year, the 16 WEGO Health Award winners will be honored at the 5th Annual Patient Advocacy Summit in Washington, DC October 23rd and 24th, 2017. How cool is that? It's a big deal and would be a great thing for any of us to be able to attend. If you'd like more information about the summit, you can learn more here.

I’m now looking to my incredibly supportive network to help endorse me for this award. There are two easy ways to endorse that only take seconds of your time!

1) You can click on my endorsement badges located to your right on the sidebar 

2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo

If I have ever supported you, made you laugh, or inspired you to keep fighting - please consider endorsing me for this award. You can continue to nominate and endorse your favorite health activists until September 1st.

Wednesday, July 12, 2017

Check Yourself Before You Wreck Yourself

'check yourself before you wreck yourself' in yellow; 'not standing still's disease' in white below that; set against a blue filter over a photo of my feet in black flip flops against a brown clinic floor

I saw the rheumy today as planned. I was a little concerned that she would chastise me for not adhering to a Mediterranean diet.

To be honest, I was more concerned that she would be upset that I wasn't really eating due to a lack of appetite, but I forget how awesome she is sometimes.

"It's okay to just snack. Who says you need full meals all day? Just get something in there."

That eased a lot of concern I had around my diet stuff. We talked about my shoulder, too, and how I need to let her know if it's still bad by the end of the month. She'll plan on injecting it to help stop it from going full frozen shoulder again.

Otherwise, I don't have to see her again until January... though, knowing my body, I'll need a more urgent visit sometime in the fall at the very least.

me in a reddish-purpleish shirt in front of a brown clinic wall with boring art behind me; a snapchat filter has turned me into a unicorn with a white horn, white ears, and white glasses, as well as adding a bit of rainbow to various parts of the photo

I've had a really busy schedule this week - so busy that I've been ignoring pals to do self-care. It makes me feel rotten, but I also needed to do it. I had a boudoir shoot yesterday (which was SO FUN!) and, while prepping for that, found a scary mole change on my pubis.

While I talk about this kind of stuff more at Chronic Sex, it's worth mentioning here, too - check things checked out.

I've always had a mole there. Hell, when I had chicken pox, one grew under the mole! I honestly thought it was a cute thing - until I looked down while grooming and saw that the pinprick mole had turned into something the size of the end of my pinky.

*Cue internal screaming from a sexuality educator*

I decided that it would be good to call my primary care doc's office to see when I could get in. There's usually a fairly long wait and, while this didn't hurt, I wanted to try to get there as soon as I could. It turned out that she had a midday appointment today so I made my way from one appointment to another.

It turns out that I have Seborrheic Keratosis, which is just a fancy term for a benign (but scary-looking-to-newbies) skin growth. It can itch and get waxy feeling, so I have to be careful not to scratch it off!

While I was there, I brought up some pelvic pain that's woken me up in the middle of the night. The pain is intense and often feels similar to the spasms I get in my back, but they're in my bladder or somewhere in my reproductive system. 

Right now, the thought is this is indeed bladder spasms, but we want to make sure there are no other issues going on. We did an impromptu pelvic exam today as well as tests for a variety of things - sexually transmitted infections, bacterial growth, etc. I also go for a transvaginal ultrasound on the 24th to rule out any growths or cancer within my business.

It feels weird to be a sexuality educator with 'pelvic pain' listed as a health issue in her chart. That said, I'm glad I brought this up today. It's been an off-and-on thing for a while and, combined with the skin thing, was enough to scare me at the very least.

Get yourself checked out anytime you think something isn't right. I would never have known my giant mark was Seborrheic Keratosis otherwise. Like the article I linked to above states, it's scary for people to see this randomly and is often mistaken for a cancerous growth.