-
What is a Disability?
Disability is an interesting word. It’s thrown around in a lot. When someone first used disability to describe what I was going through, I was a bit shocked. I couldn’t believe someone would label me that way. I got angry and frustrated. Then I started to think, do I have a disability? What does it mean to have a disability? When I look at my life, I try to focus on the positive. There are so many things that my body does right. On the flip side, my body tends to struggle on a day to day basis. Just today, while biking my heart went to 200 beats per minute.…
-
Compression Gear That Will Save Summer!
I am ecstatic that summer is almost here. Covid may change the activities we all partake in, being outside in the warm sun will never fail to make me smile. Last year, the biggest struggle I had was finding compression wear. It has to be comfortable and stop blood pooling. I couldn’t wear shorts. I was pretty much stuck with pants all the time and it was exhausting. Not only are pants too hot during the summer, wearing compression stockings under them is such a pain. I found some solutions and I thought I would share them here with you! I found a company called Shapermint. They have a huge…
-
Making Life Changing Choices
Making choices is not my strong suit. When faced with a decision, I usually have to consider all my options. I talk about it a lot and lay out all the pros and cons. Right now, I’m in the midst of deciding on whether to get a surgery that has the possibility to change the course of my life. I’m not ready to divulge the topic or changes it would make. Once I finalize decisions, I’ll let you in on my choices. I find making choices somewhat difficult. The chance of making the wrong choice often feels too close to me. People in the chronic illness community have to make…
-
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…
-
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…
-
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…
