Sunday, March 30, 2014

It does not have to be bearable.

So I'm just now writing a follow up post about my MRIs because I was waiting until I knew what to say. I got the paper that said what the radiologist saw, but then I had to wait for my neurologist to look at the pictures and get back to me. And THEN I had to talk to my physical therapist about her thoughts. So I have tried to avoid the subject as much as possible.

My brain scan came back clean. No brain bleed, just a very big dent in it where I smashed the window with my head. Yay! But that means my memory loss, speech problems, etc. are post-concussive and TBI problems, which means I could be this way for a few years or for life, and while there are ways to help, there is no cure. No yay.

My neck is just in bad shape in general, and my PT said I have ligamentous instability or something like that, which just means my spinal cord ligaments aren't stable which is part of the whole dangerous/becoming paralyzed possibility. I have a disc that's out of place a little bit, and my spine is straight instead of curved as a reaction to all of the pain.

So. Where do we go from here?

I'm back in physical therapy. My neck and back are such a mess that my PT is just doing manual stuff right now. Basically, when we move our muscles, they pump out toxins (there's a bigger word for it because they aren't actually toxic), but my neck and back muscles aren't functioning properly so my PT has to do it manually. Sounds nice, a neck and back massage, except it's not because mine are in such bad shape that it's unimaginably painful.

Because I was hit from the side and not head-on, I got side-to-side whiplash rather than front-to-back. My PT said side-to-side is a lot more damaging than front-to-back. One of my injuries on the night of my accident was a cervical spine sprain. Apparently they should have given me a neck collar to wear for a couple weeks, but since they didn't, my neck and spine have been fighting to hold my head up for these past couple months and it has just done even more damage than I probably had to begin with.

After we (hopefully) see improvement in my muscles, we will slowly move to exercises to get my neck, back, arms, and the rest of me to start functioning and regain strength. It's going to be a very slow process (and we all know how patient I am), but I'm so thankful that my friends at Drayer are taking such good care of me!

My next step is to find a neurologist/spine specialist that is A) closer to Starkville and B) a lot better than my awful neurologist in OS.

I will also be starting occupational therapy and speech therapy soon as well. In occupational, they will work with my brain and probably fine motor stuff. We will work on concentration, reading, retaining information, and other stuff like that. In speech therapy, we will work on things like keeping up with fast-paced conversations, producing sounds, figuring out how to form the sounds in order to say what I'm thinking, and listening stuff.

I am doing that stuff because it's really hard/impossible for me to read or concentrate or process what someone is saying to me. It's taken me weeks to write this. I also have a really hard time doing things like understanding sarcasm or figurative language, producing words when I want to say something, and when someone talks to me it sometimes starts to sound like gibberish rather than English.

And that is just really trippy when you've been speaking English for 21 years.

So that's the update.

Honestly, it SUCKS. All of it. Every tiny bit of it.

I hate being in unimaginable pain 24/7 and the memory loss and all of that, but mostly I hate that this makes me feel inadequate when I used to feel like I could accomplish absolutely anything. And since I'm a bit of a control freak sometimes (okay, a lot), I absolutely, positively HATE that I did not have any control of this at all.

I mean, wouldn't it be nice to have control over what happens to you?

Can I see my life schedule for today? Um, no, I absolutely will not allow someone to run 2 red lights and slam into me with their big ass FX4 truck and turn my entire world upside down. Cross it off.

I know the saying. You can't control what happens to you, but you can control how you react to it.

I KNOW that. So I smile and nod when someone says that to me (please, FOR THE LOVE, do not say that to me). And all this time I've tried to let everyone see that I'm okay and that I'm hanging in there.

But that's just it-- I'm only hanging in there. And I don't mean chillaxing on a nice, sturdy peace of rope. It's more like a very thin, frayed piece of thread and I am white knuckling it. I'm not even going to pretend I'm made of steel and that this is all bearable.

Because IT IS NOT. But here's a really cool thing my very bestest friend, Amber, recently told me that I never even thought of.

IT DOES NOT HAVE TO BE BEARABLE AND I DO NOT HAVE TO BE OKAY.

Sometimes it isn't so unbearable that I want to hide in my bed forever. I love those times. But other times it consumes every part of me, so much that all of the love and encouragement in the world will not make me feel better whatsoever. And I know that I've been defeated that day. And I'm exhausted and grumpy and so sad because I was made for so much more than what I'm capable of doing right now.

And that is okay.  



If you are talking to me and I am listening but not saying as much as I normally would, please know that I am just struggling with my speech at that moment and am too embarrassed to say so.

If I am irritable and starting to get edgy, please know that, more than likely, I am not mad at you. Sometimes the pain gets the best of me.

If I keep asking you to repeat something, please know that I am listening, and that my brain is trying to process what you are saying but sometimes it just can't comprehend what you are saying.

If you have the worst day of your life or just feel like complaining, please know I think your bad day is just as important as mine and I would love to hear about it. You slipped in front of a bunch of people on campus and I failed miserably at physical therapy. Everyone has their own stuff to deal with and I know that.

Please keep me in your prayers as I continue to try to make decisions about what is best for me as far as therapies, doctors, and classes go.

The doctors said it would be best if I stopped trying to be Pre-Accident Alexa and just tried to embrace New Alexa. My injuries, especially my TBI, have changed a lot about me, but don't worry, the same Alexa heart is down there somewhere.

And I don't know when or how long it will take, but she'll be alright eventually.

I have faith in her. :)

I hear cervical collars are in this season.

4 comments:

  1. Hey Alexa I read your blog!!! My God you are sooooo strong!! I'm praying for you a speedy recovery & I can say I will not ease up on you when I see you with that backpack (well not lately so I'm very happy bout that) BE AWARE I WILL STAY ON TOP OF WITH THE LIFTING AND MOVING AROUND TO MUCH Guess it's the mother in me! Love ya Alexa & keep taking care of yourself:) yours truly Adrienne

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  2. Haha the backpack!! I don't use it unless I absolutely have to because it kills me! You are so sweet and I am so lucky to work with you!! Love you!!

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  3. Hey sweet girl. So sorry to hear about it all, but that Alexa fight will always be there no matter what. I hope I get to see you before too long. Definitely missing you, sunshine.

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  4. All you can do is one day at a time. Information is power & I'm glad you finally have some. Frank & I love you & you can count on us if you need anything. Prayers for sure. Love you, Aunt Char

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