Right before my life turned 180

Friday, March 11, 2011

Less than one month until Shakey Amy is a full-on cyborg!

Hey everyone.It' Silas here, Amy's husband/caretaker, cheerleader and lifelong partner in this insane journey of our life together. I just wanted to pop my head up from the stress and craziness of getting ready for Amy's Deep Brain Stimulation and give everyone an update and what's shakin'…you know, besides Amy. *rim shot*

First off, the yucky stuff. Amy's Intrathecal Baclofen Pump has been turned down by about 45%, and we are really seeing just how much it had been alleviating her Dystonia symptoms. Even scarier is that we have found out just how much her Dystonia has progressed in the 2 ½ years since the pump was implanted. And to make it worse for her, we have now taken the morphine out of the pump, so not only is her Dystonia bad, but the medication in her spine to treat the pain is GONE. It's really bad, and any description of what it is like for her would fall short of even scratching the surface. Her Cervical Dystonia pain is at an 11, and no amount or combination of meds seem to help. It's very hard for both of us, but at least we have a goal and the month of debilitating pain she's suffering (and the anguish I have watching this helplessly) are a small price to pay for a possible life of living pain-free. The dreams of the future we cautiously allow ourselves to talk about seem to salve the hurt we are experiencing now. It won't last forever, it won't last forever, it won't last forever, it won't last forever…..

OK! Now let's move on to the good stuff! The best thing to report is that we got the insurance approval letter for the surgery! What this means is that there's no turning back, this is GONNA HAPPEN. Even better is that we now KNOW what is and isn't covered, and it's not as bad as we had feared. We'll still be broke, but let's just say it's not going to be as expensive as her pump was. We have it hanging on the fridge like an award. It's the most beautiful thing we've ever seen. So right there, a lot of fear and anxiety has been taken off our plate. *whew*

As you may or may not know, Amy is a METICULOUS planner. The woman took a scatterbrained chump like me and got me organized, so you know she's on the ball. So it stands to reason that everything that needs to be done prior to April 6th is either done or planned. She has to go to her GP tomorrow to clear up an ear/sinus infection, so that's a little speed bump we need to get over. Then she has to go in for cognitive testing. That may sound harmless, but when it takes 5 hours and you're Amy…well, it's gonna suck. However, it needs to be done so they can get an idea of her personality and quirks, just in case she "changes" after the surgery. Highly unlikely, but still. You can't change Amy, people and doctors have TRIED. I guess that's why it's taken so long to get the DBS. She scares doctors with her sense of humor in the face of crappy news. It must be unsettling to them to have their God-like powers of awe taken away by a spitfire like Amy.

So in addition to having everything in order financial and doctor-wise, my awesome mother-in-law Belinda is coming down to help me with Amy during the surgery and then after my PTO expires. We had our neurologist sign FMLA paperwork for her so she can take an extended stay and take care of her only child without fear of losing her job. I can't tell you what a relief this is. We're going to have the hardest 12 hours of our lives in the waiting room. I can already tell you that I'll be chewing my fingers off, even though I know the risks are minimal, which brings me to something else positive.

Through our advocacy, we have met a bunch of AWESOME people. In particular, two young women we met at the DMRF Symposium in Chicago, Kelby and Jana. Both of them have recently had DBS, and they have been a WEALTH of information. Both said it's really "not that big of a deal", and Jana even said the part where they're playing with your brain was "really cool". In addition to those words of ease, they have also answered some very practical questions we've had about recovery, improvement, etc. So big ups to both of them, because without their input and them calming our fears, we'd be frightened zombies.

Amy has already picked out a ton of RAD wraps and headwear. You know, for when we aren't out showing off her bald head and gnarly staples and freaking people out. She has also come up with a bunch of slogans for shirts that she's going to wear while she heals. We have a screen printing set-up and a lot of imagination, so we might as well have some fun wit it. Here are a few below.


(medically engineered robot)
PATIENT 04062011.715

In case of repetitive laughter
Press ctrl + alt + delete
(rt arm pit + nose + forehead)*
*see manual for full system reboot

You only have a brain, I come with a hard drive

Robot on board

F**k the hippies, you're talking with a Genetically altered HUMAN!

I only need a socket

One step closer than you are to being teleported

You think being human is hard?

One more surgery & I am taking on the terminator

Built in wi-fi

Fluent in binary

Yeah I said it.

I'm not bored I'm in sleep mode

OK, that's just a quick roundup of the happenin's with Amybot and Me. Stay tuned for more as the date approaches. We'll be asking everyone to change their profile picture on facebook from the 6th until Amy gets out of the hospital (Probably Friday or Saturday) 

If you haven't joined our FB group, do it now and tell your friends to as well!

so be on the lookout for instructions on how to show your solidarity.

We love everyone and thank all of you for caring so much for her. You guys are the coolest.

-Silas aka

Follow the JOURNEY!
Educate Others about Dystonia and help FIND A CURE!

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Thanks for commenting on this blog. I have been very bad not posting but I am trying to keep on top of it now! Support Brain Research!-Shakeyamy