After two weeks in the hospital, I’m out! I’ll be recovering for a bit before we fly back to Winnipeg, if all goes as planned we will get back November 17th.
Emotionally I’ve got a lot to process. Writing helps, but for today…I’m not quite ready to share too much. I’ll keep it simple by sharing what I posted on Instagram:
“I’ve been discharged from the hospital and am back at the care apartment (where we’ve got an accessible suite with on-site caregivers secured for as long as we need)! Some of the SPooKkkiEst parts: being back to managing IVs and meds without my amazing nurses at the hospital, so many unknowns related to my future, fears related to retethering and if/when I will need more of my spine fused because the area below my current fusion was already struggling before this surgery…just not quite as bad as the area around my brainstem.
My partner Sasha is a champ and has been helping so much…I hate how much he’s had to learn. Because of the fusion I can no longer look down enough to connect everything up for my IVs myself, and I won’t be able to lift anything for a while.
Today is Sasha’s 30th birthday and I’m resting and running fluids at home while he spends some time at the beach. Then I’m planning to pop all the pills and push through the pain to go out for a birthday dinner tonight, I’m so excited to go out and celebrate with him!
There is still a laundry list of symptoms I’m managing, and the emotions of all that has happened over the past two weeks (and ~5 years) are starting to surface. Today I told Sasha a bit more about memories of the operating room for the first time. I feel equipped to process the emotions as they come but I know it’s not going to be easy.
Yesterday before I left the hospital, my surgeon and I were talking about how many joints have been moving out of place now that I’m starting to move my body again. He said two things that really stuck out: “this is the horrible reality of the disease [EDS]” and “this is not fair.” We also talked about my desire to use my story to advocate for other patients, and he talked about his willingness to be part of that. We both have so many ideas related to improving patient experiences which is fun.
I’m grateful, scared, sad, angry, excited, and so ready to move into this next phase of life. I plan to continue sharing my story as I have capacity, I firmly believe that awareness is key to help prevent such intense medical gaslighting and neglect in patients (and myself) in the future.”
