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….
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
Body Positivity, Self Worth, Depression, Insecurities, Counseling.. Why are these words, these phrases so taboo in the chronic illness community. Why are these barely talked about? Is it supposed to help us by not acknowledging these happen? That these can affect us? It doesn’t. It actually hurts us. Positivity in general seems to be ridiculed … More Freedom in Body Acceptance
March is Endometriosis Awareness Month.. So let’s talk about it. What Exactly is it? Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining … More Let’s Talk Endometriosis..
It’s been an absolutely, ridiculously difficult post op.. The worst ever. Sometimes things just go awry! How can we plan for them? The best we can. I had a laparotomy September 19th. I had no real choice. My GJ was failing, I was starving. The plan was simple. Go in, clean scar tissue … More Post-Op from Hell..But I’m ok
Insecurities are a real bitch. They suck. They suck the love, joy and happiness from you. They can destroy you, your relationship and your happiness. “Just be confident”.. People say.. Don’t you think i’ve tried that?? Do you think I like being this insecure, scared person?? 5 years ago I was so confident. I … More Insecurities are a real…..
It’s summer time!!! Time for heat, beaches and pool! Summer is probably the worst time of the year for me due to the heat. It’s been quite the summer! So much as happened! Who else has a hard time during the summer? Anyone have any special plans this summer? My son has been battling a … More I’m a unicorn…
I’m sorry I’ve been absent for the last few months. A lot happened and I’ve been trying to process and deal. My gastroparesis has become a complete nightmare. On top of that I had to move unexpectedly. All this caused some major emotional distress and resulted in a depression/anxiety flare from hell. Lots of … More You are not a burden…
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?? Â Â 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