When you live with an invisible or rare disease, your struggles often go unseen and misunderstood. The world operates on what it can see...

I’m at a point in my life where I am actively looking for a role that matches my skills, education, and certifications—but the struggle...

Thought I share another aspect about living with a rare disorder! We often travel for care! Yesterday I had to travel 2.5 hours one way...

Refining my approach to managing MCAS has become a deeply personal journey. Following consultations with medical professionals,...

Hey everyone, it's been a while since I last shared an update. I recently made a move from Missouri to South Carolina, securing a...

I will be relocating to South Carolina! The climate is much better there! Also, my dog agrees, he has less arthritis problems!!! Keeping...

Years ago I discovered livewello and I love it. Livewello is a web-based platform that provides tools for analyzing and interpreting...

Did you know that while some disabilities are evident to onlookers, others remain concealed and are often described by those in the know...

Bend or Break is an award-winning documentary based on the memoir of Mitch Martow. The story begins with a 14-year-old boy's struggle...

The last 8 weeks, I feel like I’ve been through hell and back. Of course, I always feel like that when I have a terrible flare-up. But I...

Today, I'm feeling defeated. About four weeks ago, I made the switch to full-time day campus studies, thanks to vocational rehabilitation...

The shift in seasons and alterations to my daily routine have led to a Dysautonomia flare-up, which is far from enjoyable. Let’s delve...

I've been in EMS for quite a while, having dealt with numerous accidents, deaths, injuries, and more. We as first responders frequently...

Yesterday was rough. Not as much pain but I was tired, light headed, brain fogged and not feeling myself at all. No narcotic pain meds...

I'm doing quite well, considering the fact that I had surgery less than 24 hours ago. The pain isn't too bad. I'm comfortable moving...

Good morning my friends! I finally had the bunionectomy on my left foot yesterday. For the first time, the physicians actually believed...

I want to reflect on my experiences with primary care providers and how they often cannot provide care for those with rare diseases, also...

Photo courtesy of ABC I just finished watching a recent episode of Grey's Anatomy. A patient named Lindsay Allyn presents with...

As this blog is centered around raising awareness, I would like to discuss some of the activities I have undertaken so far. Firstly,...