The Sinsemillier

21/08/2024

I'm extremely fortunate to be able to use development funds from my job to pay for somatic therapy. On the third anniversary of my CPTSD diagnosis, I'm sharing what I've learned from several online programs:

Somatic therapy has been my go-to resource since I was diagnosed with CPTSD. While talk therapy is a good adjunct for me, somatic experiencing gets at the root of the issue: a dysregulated autonomic nervous system. I’ve ...

21/07/2024

I recently wrote a blog for work about what trauma-informed care means from the patient perspective, based on the keynote I gave at a symposium earlier this year. 10 years ago, when I was working in diabetes research, people with diabetes often talked about the mental toll the disease takes. Now that I'm in disability and patient communities all the time now, I see this topic all day every day. Our society doesn't give much space for people to talk about mental health, and as trauma-informed care has become a focus for me, I'm grateful to the folks I work with for not only being drivers of change in the US healthcare system, but also for giving me space to do this work with them *as a patient*. All too often, "centering the patient voice" is mere lip service and the spokespeople are patients who paint a rosy picture so everyone feels comfy ( or "inspiration p**n," as its known in online disability circles). No discussion of the disparities in care that are embedded in healthcare from medical school to practice, with regard to gender, race, socioeconomic circumstances, etc. Despite being published only a week ago, it's become one of our top-read blogs and we're now talking about me creating an online course for healthcare providers around the world to learn about the importance of trauma-informed care. Do I already have a million things going on? Yes. But I'll move sky, earth, and sea to make this happen.

https://www.ihi.org/insights/tips-bringing-trauma-informed-care-practice

06/07/2024

A few days before my brother died, he told me to go see The Crow. I laughed at him because I thought it was a sappy love story. With the remake coming out soon, it's conjuring up a lot of feelings: https://ko-fi.com/post/It-Cant-Rain-All-the-Time-On-the-30th-Anniversar-Z8Z2YV766

The Sinsemillier published a post on Ko-fi

04/07/2024

Nothing quite so humbling as learning a new skill. The best part has been buying yarn and hooks. Never thought I'd pick up crochet but here we are 🧶

27/06/2024

Here are some things I do to calm my nervous system in triggering episodes and coping with dissociation.

25/04/2024

Stoked to see my new friends from ! Sometimes a weighted blanket is too much: chronic pain, humid weather, or hot flashes from the perimenopause that won't quit, so I appreciate these weighted stuffed animals to help ease the anxiety. Life with CPTSD means I sometimes need "anchors" around the house to help ground me in the moment and help me feel connected (see Coping with Trauma-Related Dissociation by Suzette Boon if you want to dig in more; it's a great book!) These guys are perfect. This is not sponsored content, by the way...I'm just psyched that this Kickstarter did so well. Been waiting a while, but it was worth it! Anyway, just sharing a little something that works for me.

05/04/2024

"Trauma-informed care is a need that spans mental illness, chronic pain, rare diseases, and beyond, and that need is vast. In the US, an estimated 50 million adults are experiencing a mental illness. Of the 50.2 million people who live with chronic pain, 24.4 million suffer high-impact pain that limits their ability to work. 133 million Americans have a chronic disease, and between 25 and 30 million Americans live with a rare disease. Trauma-informed care should be required in medical school and other healthcare education programs, and it should be an integral part of the system in which healthcare is practiced."

https://cptsdfoundation.org/2024/04/01/why-trauma-informed-care-needs-widespread-practice/

Why Trauma-Informed Care Needs Widespread Practice by Lee Frost | Apr 1, 2024 | CPTSD, Guest Contributor, Trauma-Informed | 0 comments I recently gave a keynote talk at the 6th Annual Medical Symposium on Human Trafficking, a combined effort by the Virginia Commonwealth University School of Medicine...

05/04/2024

My dog over here staring at me because the earthquake woke him up from his nap. Like it's my fault. Dude.

04/04/2024

"I often felt like a changeling that was trapped in this world, longing to return to an Otherworld that I was never part of. I belonged nowhere, and all too often I struggled to feel like I was anyone at all. Being invisible was my superpower."

https://ko-fi.com/post/Forget-About-Me-Memoir-of-a-Dissociating-GenXer-E1E5WJ1O9

The Sinsemillier published a post on Ko-fi

16/03/2024

A 2020 randomized, double-blind study shows improved brain function in PTSD patients after using small doses of cannabis. This one aligns a lot with what I've experienced myself:

PTSD is one of the qualifying conditions for medical cannabis access in many states. While there are far more studies on pain and cancer, there are many on how cannabis may help people with PTSD. A 2020 study on its ant...

13/03/2024

"Many disabled people always knew that those around them were ableist, judgemental or not capable of understanding their circumstances. But something strange has happened since Covid. Even those people who were tolerant & feigned compassion have decided we are worthless."
https://broadwaybabytoronto.substack.com/p/youve-been-sick-for-years-just-die

An exploration of rampant ableism and how the pandemic changed how disabled people are treated.

13/03/2024

I've been on this soap box lately about conflicts of interest in healthcare reporting and how misinformation and disinformation are spread in the media. I believe it's just as important for medical professionals to provide financial disclosures when talking about public health on the news as it is in journals and healthcare conferences. Millions of lives are affected, and we deserve better, especially since the rest of us are subject to FTC laws about sponsored content on social media.

11/03/2024

Patients For Patient Safety US is committed to implementing the World Health Organization Global Patient Safety Action Plan in the USA.

03/03/2024

It's Endometriosis Awareness Month--reupping a post I wrote last year about endometriosis and the endocannabinoid system, and how cannabis may help:

Endometriosis affects approximately 10% of the global population. Endometrial tissue can appear in a range of areas outside the uterus, and can cause intense chronic pain and heavy, irregular periods. As I lay in the hos...

28/02/2024

When Friendships Fade: part of recovery with CPTSD is learning to leave the past that harms you behind. And sometimes you have to look at the present and figure out which parts of it belong in the past. It takes time to sort through. Be kind to yourself!

06/02/2024

If you've ever thought about getting a certificate in patient advocacy, look no further than the Social Health Network's Patient Leader Certificate Program! It's free, self-paced, and a great online learning experience. Here are some takeaways about how it can help you up your game:

https://thesinsemillier.com/f/the-social-health-network-patient-leader-certification-program

If you’ve ever wondered whether it was worth the time to participate in a patient advocacy certificate program, you’ve come to the right place! I’ve completed a few programs over the past few years and the Social Health ...

21/01/2024

The Sinemillier has big plans in 2024! I'm building a library of resources to amplify patient experience to improve healthcare for all. The project plan includes a podcast and video series, as well as summaries of research and resources to help people better advocate for their needs. After all the advocacy work I've done over the past couple of years, one thing has become clear: Trauma-informed care needs widespread practice—not just for CPTSD, but for all patients and caregivers dealing with chronic conditions and for those who have struggled to be heard and have experienced bias, misdiagnosis, and gaslighting in the healthcare industry. Check out the plan here: https://ko-fi.com/Post/Sharing-Patient-Experience-is-Essential-to-Improvi-V7V7TL0ES

The Sinsemillier published a post on Ko-fi

08/01/2024

This is it! The day before I give a 3-hour virtual lecture at Virginia Commonwealth University School of Medicine about trauma informed care from the patient perspective. I have a long history of being extremely nervous about giving presentations, but I'm psyched about this—looking forward to this and other opportunities to improve care by sharing patient experience. Coming up: a massive social media campaign with the WHO's Patients for Patient Safety Committee--Project PIVOT, where we're gathering patient experiences to inform better care.

30/12/2023

I'm giving a 3-hour presentation on trauma-informed care for the 6th Annual Medical Symposium on Human Trafficking on January 9, from 1–4. The event is virtual and in-person, and free. When I wrote about experiencing medical trauma as someone living with CPTSD last year, I had no idea what kind of opportunities would come my way, and I'm incredibly grateful to be able to share patient experience to help improve care for people living with complex trauma. You can check out the agenda here: https://www.eventbrite.com/e/6th-annual-medical-symposium-on-human-trafficking-tickets-780597537247

15/11/2023

A dysregulated autonomic nervous system is one of the core issues with CPTSD. Here, I do a deep dive into what that means, and how perimenopause and COVID can affect an already dysregulated system. Fortunately, somatic therapy and an innovative VNS device have been amazingly helpful. Here's what I learned:

https://open.substack.com/pub/thesinsemillier/p/amplified-cptsd-how-covid-affects?utm_source=share&utm_medium=android&r=1uxzjp

15/11/2023

thesinsemillier
1m
Our healthcare system is collapsing before our eyes. I've been trying to get a new P*P for more than a year. When I was carrying around 7 lbs of tumors, my primary care doc told me that my pain isn't her problem. I've had terrible healthcare for years, but ever since the pandemic, it's been layer upon layer of gaslighting and medical trauma. Don't even know what to do anymore.

Mass General Brigham said it is trying to alleviate the immediate problem by hiring more staff and making use of virtual options and alternative provider appointments

01/11/2023

I am Jane because I found a community of survivors when I needed it most. The virtual sessions I've attended have been amazing. They've helped me connect with a deeper sense of creativity and in turn, with the part of my soul that's been hiding for most of my life. Cannabis has helped me heal from complex PTSD and manage chronic pain. It's part of my daily ritual to align mind, body and spirit. Given that I have a long history of adverse reactions to traditional meds, I don't know where I'd be with it. Cannabis has made me a stronger patient advocate.

26/10/2023

07/10/2023

World Mental Health Day is this Tuesday, Oct. 10. It was two years ago that I was diagnosed with CPTSD. It was like stepping back from a puzzle I had no idea how to solve, and suddenly my fragmented mind and life made so much more sense. I've read a ton, listened to podcasts, and found my way to somatic therapy, which has been amazingly helpful. Here are my top picks for books on understanding CPTSD:

https://thesinsemillier.com/f/top-books-for-understanding-cptsd

From early childhood on, I’ve always found refuge in books. The most pleasant memories of childhood are rooted in finding refuge in libraries, always alone, where my interests migrated from one topic to another. Nerding ...

22/09/2023

Just went on my first 2-mile walk after being mostly bedridden with chronic pain for ~2 years while I waited for surgery. It's been a long and difficult recovery, but it was so lovely to finally get outside! However, this old bog witch's knees are creakier than I remember...

20/09/2023

“Our [health care] system has been designed by politicians, by academia, by scientists, by technical experts, without major input from the patient community — and we are the receivers of care,” Sheridan told Institute for Healthcare Improvement (IHI) President and CEO Kedar Mate and IHI Senior Fellow and President Emeritus Don Berwick on a recent episode of the IHI Turn on the Lights podcast. “We embody so much knowledge to help transform our system that we would like to see at all levels,” she added. Sheridan is a Founding Member, Patients for Patient Safety US.

A longtime advocate recommends a range of system-level changes to improve patient safety, including not only listening to patients but co-designing policies and procedures with them.

06/09/2023

Since being diagnosed with CPTSD two years ago, my patient advocacy efforts have led me to opportunities that are facilitating change in helping others who live with it. A reflection with a tribute to Sinéad: https://cptsdfoundation.org/2023/09/05/feel-so-different-two-years-after-diagnosis/

Feel So Different: Two Years After Diagnosis by Lee Frost | Sep 5, 2023 | CPTSD, Guest Contributor | 0 comments When Sinéad O’Connor’s The Lion and the Cobra was released in 1987, I was an exchange student spending my senior year of high school in West Berlin, Germany. My mom and stepdad sent m...

04/08/2023

Just finished the Social Health Network's new certification program! It was really inspiring--lots of planning to do now. :)

04/08/2023

I suck at sewing, but bought this little build-a-fox kit from a shop on Etsy anyway. I loved that I could choose the fabric and thread color (teal's for PTSD awareness). He's a bit off-kilter, but so am I. Fun project despite my lack of skill!

27/07/2023

Today's news hit this old GenXer hard.

https://open.substack.com/pub/thesinsemillier/p/rip-sinead-my-patron-saint-of-rage?r=1uxzjp&utm_campaign=post&utm_medium=web