On July 8th I had an open parastomal hernia repair, and colostomy revision. It required two surgeons for the surgery; my colorectal surgeon, (whom is amazing) and the hernia repair specialist. Both have extensive experience with EDS patients. We went over everything. The plan, the options, and knew it wouldn’t be an easy surgery, or … More Surgery….
This was also published by The Mighty. Dear Doctors: We come to you for help. We come to you already scared, frustrated, anxious. We don’t need any additional added to us. What we don’t need is for you to medically gaslight us. That’s not acceptable. Not in any way. We KNOW that as a rare … More An Open Letter to Doctors
Dysautonomia awareness month! What does this mean to me? It means i try to raise awareness for dysautonomia. Educate, and share my journey. In 2013, I was diagnosed with dysautonomia. Now, there’s 15 different forms. I have THREE! Three different forms. 8 years ago it was so bad I couldn’t stand up without fainting. It … More October is…dysautonomia
We hear so much of how being chronically ill affects us, but how does it affect our partners? What is it like from their perspective?? I quickly sent a text to my boyfriend, I explained I wanted to write a piece, essentially from his perspective. This is his view. … More From a Spouse’s Perspective
I’ve been dealing with health issues. My gastroparesis has flared to a hellish point. It’s become extremely problematic, to the point i’m hardly able to eat, and i’m living in constant severe nausea. I’ve lost weight, most haven’t noticed because i’m wearing baggy clothes to hide how much I’ve lost. However, things have come … More My new reality…
This post is going to be raw, unfiltered, and real. This is me being laid bare. Devastation, anger, betrayal, relief… those are the emotions i’ve felt in the last week and a half. Watching my future plans just fall apart. I’ve been so strong for so long.. When will someone be strong for me? When … More Down the Rabbit Hole..
Hope you all are well!! I’ve been busy with summer break and had a few health issues. Hopefully we’re heading into right direction now! This post I wanted to do something different. My son is super excited to be a part of this! He has such a heart of gold. He’s so compassionate, understanding … More From a child’s eyes…
This is going to be raw, deep, and i’ve held it in for so long, I need to tell it. Two years ago I went “ghost” as my best friend calls it. She had just been through hell, she needed me, and I just fell of the radar. I wasn’t the friend that I … More Going Ghost..Don’t do it.
As I scroll through the many dysautonomia groups i’m in, I notice a recurring thing.. Quotes, concerns and just venting about relationships, self esteem, sex. So many of us go though relationship break ups, marriages, fertility issues, hard decisions regarding dating, or just to have children. We all look to each other for support … More Self Esteem Struggles
Here’s my new post! Please give it a read, and leave a comment. … More From Dad’s Perspective…