The Snowball Effect

Ugh!  So, I’m kind of at the end of my rope with pain at the moment.  I hurt my back at work back in January resulting in one orthopedic telling me that I will need a single level lumbar fusion.  I’m currently waiting to see another physician for a second opinion, since we are talking about major, life changing surgery.  I don’t remember what it’s like to live without constant pain. I’ve grown accustom to it, I have learned that I can still laugh, smile, and be happy when I’m in pain. My pain has never been managed as well as it could, I’ve just not found a doctor yet that has been willing to pull out all the stops, try anything, let’s be aggressive, let’s take this pain by the horns and show it whose boss.  It’s always have this stuff that supposed to be for nerve pain, and have an anti-inflammatory.  Would you like some steroids with that? No? Ok, carry on see you in a few months where we will do nothing but talk about the fact you still hurt, and I’ll renew those prescriptions you have now, they help a little, that’s good enough…run along now.  Rinse, repeat.

I’ve always had trouble sleeping, by nature I am a night owl.  Toss in 20 cups of insomnia into a mixing bowl of pain, and stir with a body with joints that flop around like a dead chicken and you have a lady who’s had issues with insomnia since she was a young girl. It’s never been a pretty picture. Which is pretty sad considering how much I love to sleep.

Now, I have this ridiculous back pain on top of everything else. I’ve had no improvement, and now the pain is getting much worse.  I already had nerve pain through my buttocks, and thighs and some localized pain.  And of course there was my old friend, everything else hurts, and that’s the way life is.  Then all of the sudden last week this new turd shows up to crash the party.  Have you ever had a side stitch?  You know that sharp pain you get in your side when you’re running? (I know who the hell runs with EDS unless a damn bear is chasing them?) Well, should you have had the privilege of meeting a side stitch at some point in your life, multiply that by about 20 and toss it into your lower lumbar spine.  It’s constant, it won’t piss off and the only medication I’ve been given in 5 mg hydrocodone, despite the fact I’ve explained that hydrocodone does absolutely nothing for me than occasionally make me itch. But, then again I asked for Rozerem to help me sleep and I got Temazepam.  Apparently it’s supposed to make you sleepy.  It takes the edge off my overwhelming urge to scream loudly while throwing blunt objects at random people, and while that is actually a huge plus…it’s not exactly rousing my inner sleeping beauty.

And, for the big finale my joint laxity has gotten about 200% worse.  I’ve always worked very hard to keep my muscles strong.  I don’t lift weights, but passively I make darn good, and sure that I remain strong.  Unfortunately, for the past 6 months I’ve been unable to do much of anything but read, type, play some video games, perfect the art of cuddling with 2 Pit Bull mixes and a Chihuahua on a sofa, write 3 blogs.  Needless to say, I’m losing muscle like a stripper loses clothes on the catwalk.  I now consider it a win if I’m lucky enough to fall asleep at all, never mind the fact that should I make the fatal mistake of rolling over on my side, whatever side that is…it’s a goner, that shoulder is on the first train to dislocation station.  I now have to sleep with wrist braces on, unless I want to have wrists that feel like they’ve been visiting Dante’s new pad.  My foot, and ankle that already had nerve damage in them have to live in a brace or all those fun ankle bones do the tango…backward.  I now have the honor of elbows that dislocate, yeah a new dislocating joint.  Happy birthday me. Interestingly enough it actually started happening on my birthday.   My hips are worse than they’ve ever been, and my knees and I…well, we aren’t on speaking terms right now

I am terrified that this is going to be my new normal.  I am horrified at the prospect that I’m not going to be able to get back to where I was.  That all of this waiting, that this whole horrible back injury is going to put me in a place with my EDS that I can’t come back from.  I hurt so bad that I literally can’t deal.  I’ve been up for almost 36 hours of non-stop, severe pain. I tired, I’m cranky, I can’t get comfortable, the pain won’t let up, and I’m realizing that in just 6 short months my body has just fallen apart.  All I want is 1 week worth of proper pain management, 7 nights of good sleep…oh, and I want my body back the way it was. I’m powerless.  Through this entire ordeal I’ve been powerless.  I just have to be a good girl, stay quiet and wait while my body falls apart, and quite possibly my life.

Ok, pity party over…well, at least the out loud version.  Gah, this pain makes me want to suck start my shotgun.  Ok, pity party out loud is seriously over.

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