I went home empty-handed, beyond exhausted, and worried something serious might happen before I could see my doctor. I was shocked by how eerily similar the two events were. Medical gaslighting has been traumatizing and triggering and costing me a fortune in therapy.
Read moreYou are Always Worthy →
What I learned is that if you are trying your best then that is usually good enough. The problem isn’t you per se, but the other people. I was trying so hard that I realized I was trying way harder than other people and not getting good results. I was always supportive of people, so I would go to volleyball games to cheer them on or stay after school to help. I was always available if somebody needed help with their homework, someone to talk to, or any help they needed. When I needed their help, I experienced a lot of ghosting, and not being invited was difficult.
Read morePOP! for Medical PTSD →
Many chronically ill patients feel as if they should be grateful for their providers at all times, even after medical errors. Anger can tell us when a situation is unfair. It can motivate us to make positive changes to improve the healthcare system. This can be accomplished by self-advocating in-clinic appointments, coping with a new diagnosis, getting honest with providers, or navigating relationships, all while dealing with medical trauma. I hope you can join us at our next discussion group or give us a follow on Instagram: @pop_medicalptsd!
Read moreI lost My Spoons Somewhere In The Brain Fog
Have you ever walked into a room and forgotten what you came in there for? Was it to grab something, or to do something… whatever it was, poof, it’s just gone, forgotten. It happens to all of us once in a while. Now, imagine this happening all day, and sometimes for days on end. Instead of random blips, it happens often and disrupts your life. Welcome to the elusive symptom known to most as brain fog. The inspiration for this blog is because it’s been my basic mode of operation the last month while being in a flare-up (sudden worsening of symptoms). It’s been cloudy with a chance of staring off into space. Thankfully the clouds are parting and I got clarity enough to write this post.
Read moreThe Power of Reframing
I like order, structure, predictability, and while I can’t always have all of those things with my illness, there’s a certain amount that I do expect during the workday. But that day, suddenly, it was the opposite of all of those things, now I had a choice: sit here and complain about it or implement a technique I’d been learning in a professional development course. I already knew the first one wasn’t going to work, so I might as well try the second. What I didn’t expect was how amazingly effective it was going to be.
Read moreMy Onion Journey
Yet, while I was in college, I felt a whole new level of emotions. When I was a junior, I felt a mixture of sadness, then anger, and then resentment. I was worried about my next step in life. I was afraid to ask my mom to discuss my family planning future with my geneticist or endocrinologist. “What if I can’t have kids?” I’d often wonder.
Read moreHaving a Medical Emergency During the Pandemic
Going anywhere during this pandemic for me is tricky. I’m severely immune-compromised, so I have to be very careful since I most likely will not survive; that’s just fact. So I have to psyche myself up to go to the Emergency Department (ED) during this pandemic since it’s a scary prospect. Even before the pandemic, I’d have to be careful not to catch any virus or infection.
Read moreDancing with a Urea Cycle Disorder
I also enjoy dancing and miss the days when I was able to dance every week. I dance any time I get a chance to do so. Sometimes I will take a class with my friends, or we go out dancing somewhere. I have done all these things while learning how to live, love, and manage to live with a urea cycle disorder. As someone who has a rare disease, I want to share my story with others to help others going through similar struggles and strides. Even though we might have to climb these rare-disease-mountains that does not mean we have to climb them alone.
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