I’m reading back through my journal. I’m so glad I kept one so detailed through my journey. I came across my struggle of owning my story. It’s funny how sometimes when you look back you don’t remember things to be as hard as they really were.
I wrote this a few days before surgery but never got it posted so here it is, part 5:
I have to say the hospital is quite efficient here. In a matter of a hour I had 5 X-rays, blood, urine, covid, and cat scan done. We then went to a different clinic where we did a MRV scan. It is a 3D mapping of my arteries, and veins. We did see how things had moved with my instability. We gained valuable information through this scan. Turns out my right jugular doesn’t have blood flow basically at all. We hope that the fusion will be enough to unpinch this so I can avoid a jugular decompression.
It is an interesting time we live in. To travel we had to show medical forms every step of the way. Even in Salt Lake City airport. It is not easy currently to leave the country, and I’m not really sure why someone would want to leave without a good reason. Every person traveling was asked why they were traveling.
Traveling was really hard on my body. The pressure change during take off and landing sent shooting pains through my head. Not being able to lay down for so many hours. My head was just too heavy to hold up anymore.
Nothing can go smoothly when it comes to unknown conditions. Especially lots of them, not just one. Conditions that are just recently starting to be studied, looked at.
Even so, things were falling into place. Apartment booked, airplane tickets purchased.
I had no direction from Dr’s. Through hours of research I would find new disorders that would be comorbid to my condition and research those. Each one adding a piece to the puzzle. I’d find out what scans I’d need, blood work, where to go. Call around till I found the place and then contact my family Dr. I’d bring him up to speed on where I was at in my research and he would write the order I needed to travel out of state to get my MRI’s, and CINE scan.
I first learned of Ehlers-Danlos Syndrome (EDS) through a local pioneer in these medical conditions. She paved a way for many. I wouldn’t want to do what she had to do, she has blessed so many who are walking in the dark here.
I’ve wanted to write for so long. The words no longer flow from me. My mind is so confused all the time. Not able to think clearly, make sense of it. The surgeon says around day five post-op my thoughts should become more clear and I should begin to regain my focus again. I’m a former school nerd. I say former because it has been years since I’ve been able to sit and devour a book. My hope is I’ll regain my school nerd status once again.
“There’s no way to be a perfect mother and a million ways to be a good one.”
– Jill Churchill
Mothers Day. It’s a day of reflection for me. It wasn’t always that way. Traumatic experiences seem to change us as a person. For worse, or the better.
As I reflected this year I just was surprised at how far I’ve come as a mother. Through every child I’ve been molded, I’m sure mothers everywhere can relate to that one.
I should be struggling to sleep right now. Full of nerves and excitement for the morning. I suspect there’d be butterflies in my stomach as I thought about the beginning of my new adventure.
Or maybe I’d continue to feel that overwhelming peace I’ve felt from the beginning and be calm about being rolled back for surgery in just a matter of hours. Continue reading
Sometimes I just feel that words bubbling up. Needing to try and escape this cage. Sometimes it’s hard to find words for what I’m feeling and going through. But I have to try because I need to break the Silence.
There’s so much they don’t tell you about postpartum. I wish people prepared for postpartum like they do packing for the hospital. Continue reading
Much like listening to the same song over and over I feel like I can get stuck on repeat in recovery. Finding the same issue resurfacing again and again. It can hurt. It can be frustrating and it most definitely has made me feel defeated at times.
I’ve started to compare my mental recovery to healing from a surgery (appropriate, I know.) It’s really painful in the beginning than slowly the pain comes down as you do things to help it. After that as you heal from the outside people no longer think of your recovery but you still feel the incisions brushing against your clothing, irritated and sometimes painful but most definitely uncomfortable. Continue reading