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Why Meditation is Key
I love meditation. It’s something I found by accident, I started off with the app Headspace and evolved from there. When I first started, it was a challenge. I wasn’t meditating consistently and I wasn’t seeing any results. When I chose to start, I did it because it was something my doctors suggested. Being the dutiful patient I am, I ran with it. Well, at first I limped with it. Slowly, I got up to walking speed and now I’m finally running with it. I think there’s a stigma around meditation. We all have this grand idea that within one session we will have found enlightenment. It only takes the…
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Becoming Vulnerable
When I first started this blog, I didn’t know what to expect. I wanted to share my story, help others through similar experiences. Maybe make one or two individuals feel less alone. When this blog came to fruition, the idea of sharing my story became daunting. When this new path of chronic illness unfolding in front of me, I knew there was a reason. There was something that I needed to learn. For some reason, the universe chose me. There’s such a thing as medical narrative. This comes in different forms, but it’s how we explain what is happening to us when we are ill. This term was foreign to…
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How to Find Radical Acceptance
Radical acceptance is often brought up in treatment for OCD. The concept is quite intriguing. It is the idea that we only need to accept what we are experiencing. In one moment, to the next we bring ourselves to a state of peace by accepting our circumstance. For me, radical acceptance has been very important in my chronic illness journey. After my last surgery, radical acceptance clicked for me. In times of pain, it’s easier to accept than in times of anxiety. So how can we find radical acceptance and how do we implement it into our lives? Here’s how I found radical acceptance: Be Patient Radical acceptance is a…
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Preparing For Surgery
I have a surgery date for my hip arthroscopy! This is exciting to me because I’m ready to start recovery. My surgery will take place the second week of February. Apparently, I like to recover during holidays because it’s the day before Valentine’s day. Getting to this point was a long journey and now it’s time to prepare. This means that I need to train Crush to work with crutches. This is new to both of us. I need to strengthen my body, specifically my abdominal muscles and my arms. Finally, I need to prepare for being somewhat immoblie. This means moving into a different room closer to surgery.The appointment…
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A Terrifying Appointment
I’m writing this on Sunday but by the time this is up, the appointment I’m nervous about will have happened. This appointment is with an autonomic neurologist. It’s scary because I’ve had a couple neurologists tell me that my symptoms go far beyond POTs. This appointment is hopefully going to give me an answer about what is going on in my body. To be candid, what the neurologists fear is that I’m in pure autonomic failure. This diagnosis would not be shocking. It’s what I started to fear as my neurological deficits become more intense. It’s the confirmation that I fear. I’m already experiencing symptoms and naming them would create…
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Navigating the World With a Service Dog
If you have a service dog, you know how much it changes your world. After having Crush for over a month, I realized there’s a lot of things people don’t tell you about having a service dog. Getting Crush is the best decision I ever made. I am free to do things independently, but it doesn’t come without a few ups and downs. There are times when people interfere, causing frustrations. When we’re out in public, there’s a spotlight on us. That’s not always a bad thing, most times it brings a smile to my face. Crush is such a helper, he is a safety net. When shit hits the…
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What is Dysautonomia?
Disclaimer: I am not a doctor. I am speaking from experience and my own research. If you have questions, please ask your physician or go to the Dysautonomia International website. A lot of people have to ask, “What is dysautonomia?” It’s a fair question. Dysautonomia is not something that is often addressed or explained. Whether you are diagnosed or had a family member diagnosed with dysautonomia, it’s important to understand what that means. In Spring 2019, I was diagnosed with Postural Orthostatic Tachycardia Syndrome. This is only one of the diseases or syndromes that falls under the umbrella of dysautonomia. Dysautonomia is a general term. It covers diagnoses that affect…
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Service Dog Etiquette
I’ve had Crush for a month now. It’s clear that there are some large pitfalls in the education system about service dogs. I haven’t had any intolerant or inconsiderate encounters. For that, I am grateful. That being said, people do not respect the sign, please don’t touch. So, I’m taking this time to set out a basic guideline for how to interact with a service dog. Don’t TouchThis should go without saying but apparently it needs to be said. Despite the sign that says, please don’t touch, I often have people ask to pet him. If Crush is working, you can not touch him. It’s that simple. I’m not being…
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A Chronic Illness How to Guide
So, you found out you have a chronic illness or you’re experiencing symptoms you can’t make sense of, fear not. I am here to give you my best tips and tricks for surviving chronic illness. This starts with talking about appointments. How to Advocate For YourselfThis is not something that came easy to me. It took about twenty appointments to get the hang of it but now I am confident going into 90% of my appointments. Be patient, you’ll get the hang of it. Start by listening and acknowledging when you’re getting defensive. Doctors will throw out ideas that may upset you. They can be frustrating or downright offensive. Most…
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My Response to “I’ll Pray For You”
If you’re chronically ill, you’ve heard it before a thousand times. “I’ll pray for you.” Now, I’m not talking about the cousin who is genuinely saying, “I’m keeping you in my prayers.” I’m talking about the person that’s saying it as a condescending belittlement. For a lot of people, coming in contact with someone who looks normal and is dealing with something life altering, is uncomfortable. People don’t know what to say or how to respond. The problem with saying, “I’ll pray for you” is that they’re praying for the wrong thing.I’m going to try to explain this in the most elegant way possible. I don’t need to be fixed.…
