My Experience
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Dealing With Endless Possibilities
In life there are so many scenarios that make you scratch your head. It feels like in mine there are new situations that pop up everyday. Right now, life is filled with questions. New diagnoses, new symptoms, and new questions are around every corner. Some of them are hopeful, terrifying or even grim. Dealing with these situations makes me stronger but it doesn’t come easily. Here’s how I deal with endless possibilities…. Hope I don’t care what anyone says, I believe there is always hope. It may not be what you want or what you think you need but there’s a reason it’s happening. Despite two years of continuous and…
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Finding My Footing (Literally)
The past two years have been a wild roller coaster. It’s been ups and downs, while my medical problems ebbed and flowed. I am finally (almost) two months without an angioedema episode. Although it may be too early to celebrate, I can’t help but feel excited. Since getting surgery, I am full of hope. Maybe it’s the stress that has slowly dissipated. Both of my surgeries are complete and recovery has been going well for both. I can honestly say I never imagined myself in this situation but that’s okay. I’m not under the assumption that life would come without it’s trials and tribulations. I think what I’m trying to…
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What I Learned From Hip Surgery
We all know that surgery, in one form or another, is not always an enjoyable experience. It’s not the worst by any means (at least mine haven’t been) but if given the choice, most of us would opt out. Orthopedic surgery is a whole new experience for me. It’s the first opportunity I have to jeopardize my health by trying to recover too quickly. It doesn’t matter if I want to walk, if I want to push through pain, or if I want to test the limits of what my new hip can do. I can cause damage. That scares me. Everyone who is close to me is aware of…
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It’s Okay to Talk About You
This is more for the spoonie supporters, unless a spoonie out there needs to hear this. I have been getting this a lot lately, “I’m sorry I shouldn’t complain, you’ve got so much going on.” It’s true, sometimes I may have to dig deep for sympathy but most of the time I love to hear what others are going through. Most importantly, it’s okay to talk about you!! What I am going through should not impact how you talk to me. I want to hear your thoughts and feelings. They didn’t disappear because I had to go to a doctor’s appointment. Your experience is valid. Often, I love to hear…
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Tomorrow is Surgery Day
I have to write about this because it’s heavy on my mind. I’ve been preparing all week, moving upstairs, buying snacks and sweatpants. Going out with friends and ensuring my health is all in order. Today, I have a few preoperative appointments. I’ll sign documents that accept the risks of surgery, which is always anxiety provoking for me. I’ll meet with a physical therapist that will tell me my restrictions. Most of which are pretty extensive for the first few weeks. I didn’t anticipate needing hip surgery. When my original physician brought it up I assumed it was a scare tactic. Stop running or you’ll cause real damage. I didn’t…
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Setting Boundaries and Learning to Grow
I’ve always been good at setting boundaries. It’s one of the first things I learned in therapy, way back when. It can be difficult to learn what is a boundary and what is selfish. When I was taught about boundaries, it was about discovering what you can handle. Stepping back and asking yourself, is this my emotion? What emotions belong to another individual? As I grew with this concept it continued to develop. I learned that indulging others for fear of their anger was not acting in my own best interest. In a general sense, setting boundaries has helped shape me as a person. When I was young, I struggled…
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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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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…
