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
We made is through 2020!! I feel like that is such an accomplishment! We’ve faced things we’ve never before experienced. We made it through. We made it to 2021. My 2020 was riddled with appointments, treatment decisions, ensuring my nutrition was stable, and virtual school for my son. Which was an absolute disaster. So much … More Wrapping up 2020
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
I’ve spent the last week or so reflecting on my year. My 2018 started out promising..it seemed to have spiraled a bit! January was interesting. It was probably when I first started having doubt about getting married. By March, I was thinking of my ex boyfriend, dreaming of him more often, and really started … More End of the Year… Reflection
**Trigger warning. ** The past month and a half has been incredibly difficult. I was supposed to get married, but things were called off. They should have been months ago…Â Ending a 2 year relationship and engagement wasn’t easy. However, the warning signs were there. The red flags were waving. I ignored them till … More Now I choose to live…
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..
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
Hello my beautiful and amazing lovelies!!! I know i’ve been missing in action, but now i’m focusing more on writing, with the support of my family and friends!!! OK!! Lets get down to it! So, i’m not sure any of you know, last year I signed on to be a Community Leader with Dysautonomia Support … More Life, Insecurities and Strength