One Month. One Month Until I Gain a Bad-Ass Scar.

Pretty much how I'm feeling right now.

One month.

It's officially one month until June 25th, the day my head and neck gets sliced open and a piece of my hip bone is screwed into my top two vertebrae.

Sorry, I felt like being gory. But hey, it's accurate.

But I'll be honest here... I'm actually really nervous. I know that it's not strange to be nervous about a major operation, but I normally try to play it off and pretend that I'm not. Really, it's for my own benefit as much as it is for the people who I'm talking to who I don't want to freak out/make sad/annoy, etc. If I separate myself from those feelings enough, I can usually function. But when I start to think about it and reality starts hitting me, I have to wimp out and push it out of my mind.


A good friend of mine who I "met" through Facebook gave me some good, albeit freaky advise when I first told her that I was getting this surgery (she's been through this and a billion other painful, horrible surgeries). She told me something along the lines of when she was getting this surgery, people knew that she was really nervous about it so they tried to help her by saying that it wouldn't be that big of a deal and that when she woke up, things would be alright. Since she believed them, she was totally freaked out and worried when she woke up in the most pain she's ever felt in her life, because that must mean that there's something wrong, right? Nope, it's just a horribly painful surgery.

So I SUPER appreciate her giving it to me straight because I don't want to have that experience, but of course, it's worrisome too. She's also an EDSer, and in general, we have a HIGH pain tolerance. So if she (and all the others I've talked to) were in that much pain...

Yeah. Ouch.

But at the same time, I'm still really, really excited. It's a strange feeling to be so excited about something that you're dreading so much. But the sooner I get this done, the sooner I can hopefully get back to "normal" life. I mean, my normal. As "normal" as life can be for someone who has EDS, POTS, GP, MCAD, and a million other things.

And then there's the part of me that likes to overpower my thoughts when I'm vulnerable. Insomnia sucks for this.

It's the part of me that tells me that I'm not worth it. That I should somehow just "suck it up," rip off the neck brace, and live... somehow. That I'm wasting people's money on having this surgery when I should either not have it or at least gamble with someone in Canada.

You'd think the threat of having a mini stroke and the extremely firm letter and verbal diagnoses/warnings from one of the very top neurosurgeons in the entire world would stop these thoughts, but noooo. 

In these moments, I have to remember a few things. I have to remind myself how bad I was before I saw this neurosurgeon. How I had a TIA and how extremely jerky my legs were. How I couldn't hold my head up. How I had a migraine every single day for almost half a year. How I had to drop out of college; my beloved carefully planned-out schedule for post secondary. How I couldn't even sit up long enough to practice piano, which is one of my favourite pastimes. How desperate I was for answers and someone to help me. How utterly alone and discouraged I felt.

I also have to remind myself that this neurosurgeon is a world-renowned EDS expert so he REALLY knows his stuff. People come from literally all over the world to see him - people with complicated and lengthly medical histories, people who have been told that there's either nothing wrong with them or that they're too messed up to fix - and they have been given help and hope. He wouldn't be offering to help me if he didn't think that it was absolutely necessary and would almost for sure alleviate most of my neurological symptoms.

And last but certainly not least, I have to remind myself that I AM worth it all. That I'm worth all the time and money my family have and are pouring into my life. That I'm worth the donations coming in from friends and strangers alike. That I'm worth a life without constant migraines and worry of having a stroke from simply turning my head.

That I'm as important as any other person who I would definitely wish the best for and try to help if the tables were turned.

So, friends, I'm hanging in here. I have my bad days, but I also have my good. I may still be exhausted much of the time (whether I show it or not) and have a frighteningly bad memory along with other symptoms that are still present, but I'm so grateful that this neck brace is helping. And, I'm trying to hang onto the hope that my neurosurgeon has given me. Hope that this surgery will at least fix most of my worst neurological problems. Hope that I'll heal up well afterwords and get some of my life back.

Hope that there are doctors out there who truly are experts on EDS.

As hard as this post was to write, I'm glad I did it. I think I'll try to re-read it whenever I feel myself slipping into one of those dark moments and hope that it helps.

I hope it can maybe help someone else out there, too. Because if you're reading this,

YOU'RE WORTH IT.

Simply because you're a human being. A wonderful, incredible, potential-packed human being.

Anyways, pardon me while I go back to pushing the thought of being cut open out of my mind so I can finally catch some sleep.

One last piece of optimism:

One month until I gain a bad-ass scar!

Yarr! Like a pirate. Cause apparently I associate bad-ass
scars with pirates. And think that a giant scar will make me
look intimidating despite my babyface and tie-dye obsession.
ADHD and insomnia work beautifully together.
I think I'm going to regret this picture in the morning.

-Sarah

P.S. - Please keep sharing my Indiegogo campaign! Only about 3 weeks left until it closes, and it would really help us out to meet our goal on there! (http://igg.me/at/sarahrush/x/2952137)

P.P.S. - Please also keep sharing my EDS awareness video! I'm astounded to find that it already has over 3,000 views on it and SO many encouraging comments and messages regarding it!! The more people who know about EDS, the more undiagnosed (AND already diagnosed!) EDSers who can be helped. (http://www.youtube.com/watch?v=-N7xUC2dClo)

P.P.P.S. - Yeah, I know this doesn't fit with Saturday's theme, but this is one of those times where I will break the "rules" because I have something more important to write. ;)