Life, Curve balls, Sci-fi to thoughts of Super Ninjas and True Loves... Everything is upside down, 16 surgeries in 7 years... Peek inside my cyborg brain
Right before my life turned 180
Wednesday, March 30, 2011
One Week To GO!!!!!!
Hey everyone. Silas here. Well, today is Wednesday, which means we have exactly ONE WEEK until Amy's Deep Brain stimulation procedure! We're in the final stretch, and it's getting intense. We have been getting hit with waves of "Holy crap, it's BRAIN SURGERY", and then finding out how to cope with the what-if's and what-could-be's.
First off, Amy is probably in the worst pain she has felt since the days when she was having severe storms and wasn't diagnosed and properly medicated. I can't remember if I've broken it down for everyone before, but she has had her Baclofen pump turned down by almost half. On top of not having the Baclofen in her spine to quell the severe spasticity, she has had all of the morphine taken out of her pump. So she is suffering bad spasms and tremors, and she has no pain relief outside of oral medications that don't help nearly as well as the real thing delivered straight to your cerebral spinal fluid. It just struck me how brutal (and almost gross) that sentence sounds, but that's just stating the facts without adding any verbal flourishes to it. It IS brutal. It's unimaginably hard for her to take, and it's really hard to watch. (More on that in a minute). Her thyroid has leveled out this week, but she has still been sleeping a lot. When she sleeps, she doesn't have Dystonia. Even though I don't get to spend time with her as much as I'd like, I encourage her to sleep. It's like time travel. You sleep, then you wake up and its one day closer to the goal. You medicate yourself, you sleep, then you wake up and it's even CLOSER. That's how she's been dealing with it physically. MENTALLY, she's been a cool cookie. Sure, she's had a couple of realizations smack her upside the head, but she has been dealing quite well in my opinion. She's reached her limits to be sure, but she has a good attitude. This is what she's been waiting for, so I think she's keeping that in her mind at all times. She's dealing nicely, and I admire her so much for that.
Speaking for myself, it finally hit me on Monday morning, beginning on Sunday night. Amy was in excruciating pain that evening, and had me massage her muscles to try and loosen them up. This was very painful for her, and she was sobbing like I have never heard before. Instead of crying with her, I steeled myself and tried not to lose my cool. After all, I'm supposed to be her ROCK. I need to be strong for her and let her just let it out. Well, that wasn't healthy for me. I bottled up my fears, sadness and the extreme feelings of helplessness that come with seeing Amy hurt, and hurting her even more by karate-chopping her muscles. Early Monday morning, I felt awful. My stomach was churning and I began to feel physically ill in ways I have never felt before. I ended up calling in sick to work on the busiest days of the week and go back to sleep. I was eventually called in anyway and had to rush to work to be at my 1:00 meeting. I felt really weak and disconnected, and I was having waves of anxiety that scared me. I cried off & on, and all I could think about was bad things. It seemed like the longest four hours of my life. When I was finally free from work, I went straight home and went to sleep. I just checked out. I slept like crap and woke up every hour or so, and began feeling "wormy". I can't explain it, but I was REALLY uncomfortable in my skin. That feeling intensified when I woke up. I was really dizzy and had cold sweats. I'm telling you, I have never felt this way before. Well, it just got worse from there. Yesterday was a really hard day for me and I fell to pieces. I just couldn't work, I couldn't shake that wormy feeling, and I couldn't stop crying. It wasn't until about 4:00 that I started feeling physically (but not mentally) better. I made it home, did some chores, and let myself love on my wonderful wife and cry. I told her I didn't know what the hell was wrong with my body, but it was really freaking me out. Amy broke it down for me that my emotions were manifesting themselves physically and that we needed to talk it out. We agreed that it's going to be tougher than we thought for ME to deal with, and that from here on out ANYTHING could happen in our minds because we are so CLOSE. Even though she's facing the surgery, she will be preoccupied and doped up during the procedure. Meanwhile Me, her Mom Belinda, her Aunt Sharan, and our dear friend Shonda will be sitting in the waiting room for about 12 hours FREAKING OUT. While she suffers in a manner we can't imagine, we will suffer in a way that she can't imagine when she's in the operating room. Amy always has a way of making me see the obvious when I am stressed out or when I do something stupid. She's brilliant that way. She knows everything about me, and what makes me tick. Although she doesn't have to do it as often as she used to, she always knows how to bring me back to Earth. This morning when I talked to her on the phone, I started getting weepy again, and again she brought me to my senses with a little e-mail:
I'm not perfect You're not perfect But together we are FLAWLESS
This is just one reason why I have been getting so scared: because I love her more than anything on this planet. She and The Twins are all I have in this world, and if anything ever happened to her I don't know what I'd do. She is my life. Without her, I'm nothing. I wish everyone could have what I have in her, and could feel love in their hearts like I have for Amy as intensely as I do. We should all be so blessed. And you know, considering that I have buried my whole immediate family one-by-one, you can imagine how tight I've held on to Amy. I'm not ashamed to admit I have severe abandonment issues. Anyone in my situation would! I know this, I've worked on it in therapy, and I've made my peace with my role as a caretaker. But as I've been saying to myself lately, I'm strong but I am not made of stone. I am a fragile human being that is acutely in touch with his emotions. I've never been a typical guy in that aspect, which is I guess why Amy loves me as much as she does. Anyway….that's MY update.
So that's the one week pre-op update. I'm supposed to be writing this all down for you guys and for myself all this week, and then some after the surgery, so I will try and be diligent in my updates. They probably won't be as verbose as this one, but I can assure you that I will try and get all the news I can about how everything goes down to you all. This is the hugest thing that has ever happened in our lives, so I'd be remiss if I couldn't scrape some words together that inform our friends and followers about how this is all happening as it happens. Also, we have our whole lives ahead of us, and I'm sure it would be nice to have something to read that reflects this time in our lives when we're older and…wait for it…