Seeing the love that these people, my people have for me. It feels good and hurts at the same time. I hate that the love these people have for me caused them so much pain and heartache. Not having answers was the worst.
Today January 9th marks two years since I was transferred to a long term care facility. I remember being terrified because I knew I would be alone on that first night. When you are unable to see or voice your needs it's unimaginable. I remember before I was transferred letting Bryan "know" to give my "list" of usual needs to the ambulance and care facility. The list consisted of; fan? Repositioned? Music?Chapstick? And then they would name body party's from my head down to find what was bothering me. I would shake my thumb when they named the right thing.
On the ambulance ride from Chico to Folsom- about an hour and a half, I recall a medic asking if I was in pain. I wiggled my thumb "yes" I figured they would push pain meds through my port thingy... not to be shanked by a syringe while on a bumpy road in the middle of nowhere Northern California... I really didn't see that coming lol.
Once I got there my anxiety was through the roof but I was instantly calmed once I heard my cousin, Tony's voice. He was definitely my hero that night. I knew in my heart that he wouldn't let these new people who didn't know me, kill me lol... you don't really think rationally when you are unable to speak or have a conversation for a month lol. Then I heard my mother in laws voice. I felt so loved and relieved. To go from expecting to be alone and terrified to surrounded by two people who loved me. I know it wasn't easy staying up all night and interpreting my needs. I love you both so very much.
On that day was also the begging of me being able to open my eyes after nearly a month. They would only squint open and could not focus. But it was a start.
Last year on this day, this blog officially began. It has been a hell of a journey and I'm so thankful for all of the wonderful people it has connected me to. I never dreamt that my words would travel so far. It's an odd but wonderful feeling. I wanted to create a place where GBS fighters and their families could go for support, answers and to easily find stories of others. I'm so proud of my project "The Faces of Guillain Barré" and how many people it helped.
I never thought I would enjoy writing. It intimidated me to be truthful... but spilling these words out has helped me heal. I never expected that. Thank you to each and every one of you who deal with my ramblings!
Today I woke up to my phone buzzing like crazy from multiple texts from my sister, Brandi. She told me she would pick me up in 30 min and I was going shopping in Chico (30 min away) with her.
Then I realized that all 3 of my walking sicks, my wheelchair and handicap placard were in my truck that was with my husband at work.
I decided to challenge myself and to go anyways. We went to a few stores for Brandi and then lunch at Hulas- Mongolian BBQ. It still feels weird to be up right while out and about. It's a whole different perspective. We then roamed around Ross. I pushed a cart for added support and then found a comfy chair to camp out in.
Well I survived my first shopping trip without any Gimp equipment 🙌🙌 whoop whoop! But I promptly took a nap when I got home lol
Yay for milestones. And extra points to me since I accomplished this while having a flare up- sensitive skin, sometimes it feels on fire, fatigue, aches and pains, sickness, headaches, ect. It's not fun but I'll take a flare up over a relaps any day. On these days I try to get extra rest and pull out an adult coloring book. They help me not think about my pain... and who doesn't love coloring?
Hopefully January 9th, 2018 bring something else exciting.
