Katy’s Story

Site created on March 4, 2019

So we have decided to keep a caring bridge site going for updates for Katy’s next surgery, but also for a running log of memoirs for her to use as she manages her illness, Ehlers-Danlos Syndrome. Sadly along with EDS comes small fiber neuropathy, POTS, tethered spinal cord, mast cell activation disease, intractable headaches,  joint dislocations, countless surgeries, sleep problems and more. It’s been a long journey with lots of ups and downs along the way. Thank you for checking in and don’t forget to leave a comment or sign the guest book! 

Newest Update

Journal entry by Katy Cummins-Bakko

A couple days home and I’m feeling a little more coherent so here I am! Wow, so much happened and so much I’d like to forget too. Just a warning, I may repeat myself so forgive me if this gets boring! 

I was in the hospital for I think three days. We learned I should’ve listened to my surgeon and stayed three more. From home, there was debate about me going back but it was too hard to decide everything so I just stayed home and let Brett handle all the calls with Med changes and such. I won’t gross you out with details but it was rough. That’s when they said I would absolutely NOT be able to leave town at a week and Brett decided he needed to stay with me. That man is a saint. 

I have a brace I have to wear 24/7 for 6-8 more weeks. Blech. That means no driving for that long either. I also have a bone growth stimulator machine I wear for 4 hours a day for the next six months. My grand plan of doing my cute little undercut hair cut was for nothing because only about a half inch of my incision is in my hair and the rest is on my bare neck. I can’t see it, now that I’m not an owl!, but thru pics it’s about 3-4 inches of ewwww. Like really ewwww. They also used a medieval kind of head vice thing to hold my head still while they did their thing and I have spots all over my skull that hurt soooo bad but are getting better. Phew. 

Besides the actual reality of it all, Brett and I loved our two weeks of relaxing with each other with nowhere to go, and nothing to do. We saw lots of movies and my fave, they had a 24hour Blooper Channel, who thought of this and how can I hug them??? I’m still not eating well because of some issues with meds and antibiotics etc. but pudding works. I don’t know how many times I spilled chocolate pudding down my neck brace laughing at this channel. 😂 

I missed my kids so much. My dogs, my friends, everything but the weather. A lot went down here while we were gone. I hate missing out. And I’m in for a long recovery because of the nature of this surgery and the needs we still have to address, and I hate how little I can be here for my friends who are dealing with so much.

What I find so hard to describe is that it takes forever for me to mentally rejoin the world after these surgeries. I don’t heal as fast as non-EDSers and I’m in pain, I’m on meds, but there is also something about having to have so many surgeries in ones life. It requires you to evaluate your mortality every single time. I’m not talking about my little ulnar nerve surgery here or a screw removal there, but with these big ones, which I have now had nearly two a year, I get scared beyond words for days before. And then when I’m ok after, and I get home to heal, I feel so lost. I don’t know how to just jump right back into life like I was living it pre-op. It just takes such a damn toll on me every time and I’m running out of ways to manage it, BUT, and I think this is a big but, I just need time , and it’s very early, and I’m still very tired and in pain and all that. I just want to jump back in and be there for my friends who are hurting, or who need help on a project or who just need to go out and have some fun after a rough week at work but I can’t. And I hate it. But, I will try to be better at managing all these emotions and try not to isolate myself knowing I can’t be there for my loved ones yet because that’s just all I can do. 

Thanks so much for everything all along the way. You all made me feel encouraged, cared for and loved. I hope you feel that same love in your life and know that if you need me, I will always do my very best to be there for you too, ewwwwy neck or not. 😉❤️

love love love

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