Chat with Katy - A Patient at Inclusive Care

Before the first fundraiser for the “Pay What You Can” Fund, I put a call out on my instagram stories to see if anyone local would be willing to speak at the event. Katy was the first person to respond. I had no idea what she was going to say before she said it, live, on stage, at the event, with me sitting in a chair to her right. This is what she said:

“Put HIPPA on hold – I have a story to tell.

In 2018, my GP was trying to help me with chronic back pain and stress and depression related sexual and pelvic floor pain. She recommended I connect with a doctor she was following on Instagram – a pelvic floor PT who might be able to help. I have seen a lot of physical therapists throughout my gravity riddled and clumsy life, but I had never heard of a pelvic floor PT. I wasn’t even sure what my pelvic floor was.

The first time I met with Krystyna we spent most of the appointment talking about how the muscles work and how everything between my hips and my lungs is connected. We also talked about how my gyno’s instructions of “more foreplay and lube” was not going to get me to pain-free sex. And that it was mostly bullshit.

Background:

I have seen a gynecologist since I was 13, about a month after my first period, and I’ve always been told I am very ‘body aware’. But even after all the ultrasounds, MRIs, and exploratory surgeries I had never been taught about my pelvic floor, how it works, or how to take care of it. I was diagnosed with endometriosis and polycystic ovarian syndrome in my teens, and I was told that pain was going to be a part of the rest of my life.

You’re a woman. Tough shit. Get tough.

Years later Krystyna was the first doctor to tell me that isn’t true, and I don’t have to live with that stress and expectation. We started to untrain my brain.

I learned about my anatomy. I learned how to look at my own body outside of a clinical/medical setting, and how to recognize how powerful it really is. Krystyna helped me identify what hurt, what was causing that hurt, and – most importantly – what I could do about it. I was introduced to new tools. I was taught skills to take home and actually apply to real life. She gave me so many different options and techniques that I was able to find what worked for me and find the ones I would follow through with instead of feeling bad I hadn’t done my homework.

Together with her, I learned how to tune into my body and how to identify what things caused my pain or my body’s reactions. And I learned that it is ok to say NO to those things.

As life and 2020 happened, she helped me transition to treating myself and owning my care.

And then, I fell.

March 2021. I fell through a set of stairs and broke….a lot of things

-          L3, 4, and 5 were fractured.

-          My sacrum had broken as well as the ischium bones on both sides.

-          My tailbone had mostly removed itself.

-          Nerve damage starting at L4

-          Cauda Equina syndrome

-          Constant nerve and muscle spasms

-          Pelvic Floor dysfunction

It was a full-on spinal cord injury.

Expectedly, there was a huge list of new doctors. Neurologists, orthopedists, podiatrists, occupational therapists, physical therapists. PTs for my muscles; PTs for my joints and nerves; PT techs to teach me how to walk again.

I had one appointment with a nurse to go over bladder and bowel control.

But I knew better. Krystyna, Inclusive Care’s Instagram, and the knowledge she gave me told me something was missing. From my time with her, I gained comfort and confidence in asking about my pelvic muscles and function. About what my sex life would look like. And how was I going to go out in public without a catheter or peeing my pants.

I had moved past that ingrained idea that “Being a woman is hard. Toughen up and ignore the pain.” Just because I now have an SCI does not mean I have to go back there.

The phrase for this is self-advocacy.

That wasn’t a skill I had before. But I knew I needed and had the vocabulary to ask for one more PT. I knew how to tell them what was wrong, what I wanted to do about it, and most importantly, what I wanted.

Working with Inclusive Care was life changing. Krystyna took away my complacency with pain. She showed me that it is ok to talk about the “awkward” things with the doctors. She taught me how to self-advocate.

Without Krystyna and Inclusive Care. I don’t know where I would be today, but I am sure I would be in more pain. Not only did she change my life, she taught me how to speak up and out so I could change it myself.”