Friday, April 24, 2015

The New Friday Night

I have no idea what to blog about.  

I've thought about a few topics: why I blog, drug research, adaptive lifestyle, pooping (but really this is an important topic in the MS community that no one really talks about.  Don't worry - I will eventually).

It's a Friday night - I really should be primping and getting ready for a night out.  Because that is what people my age do on Fridays- they go out.  They have fun.  They socialize.  

You know what I'm doing?  Im sitting in my recliner, already in my pjs, about to get in bed with netflix.  

And in a bit I'll hop in my wheelchair and maybe make an ice cream.

Oh yes, did I mention I'm in a wheelchair?  Like full time?

I had a wheelchair for emergency days in the past or if I was going somewhere that required lots of walking.  It had been stowed in our basement for the past year, gathering cobwebs as I was doing so well and didn't have any use for it.  I even thought one day about selling it - but then  re-evaluated that I'd probably need it eventually (like 10 years eventually, not 10 months MS - gosh).

In January I started feeling weird - the grey skies before the storm.  And then one Tuesday I was crouching down getting something out of my closet and the next thing my legs had given out and I've fallen.  

What makes this relapse different then before?  

Before there was a disconnect between my brain and my legs.  I would stand and my brain would send a message to my legs "hey time to walk loves" but the message would be stopped in it's path.  Eventually it would get to my legs, sometimes not in a full message (hence why I used the arm crutches) but it would get there.  

I was able to reteach myself to walk by building different message paths from brain to legs successfully. 

How that differs from now is that it's just blank - there is no message.  I stand and go to take a step and all that is there is blackness.  On top of severe paralysis.  I can take a few steps with help (it's so ugly) but its all still black in my head.  

We've tried what we could to help - we did the steroids (always the first counter attack) and that went terribly bad.  Then we did plasmapheresis (second counter) for 5 rounds which helped me get back to baseline, which I had slipped from due to the damages of the steroids.  The 5th round though I reacted poorly and ended up getting to ride in an ambulance (among other things)!  Then we tried Rituxan, an infused chemo (third times the charm right?).  And well, that just about gave me a heart attack (hahah - ok maybe that joke isn't funny). 

All this time I bounced between baseline (being able to use the wheelchair) to severely below (not being able to sit up) - no improvement on the actual legs.  

And because we are kind of out of options, we decided to try the that Rituxan drug again, in hopes that going slower and using different pre-drugs might help eliminate side effects.  8.5 hours, two mishaps, and a hard core nap later, I made it through.  

Then were the weeks from hell.  Have you ever been in so much discomfort i.e. pain that you can't even cry?  That was my life.  Nothing could help, nothing could relieve.  I just had to wait it out and hope for the best. 

And here we are - I can sit up (!! positive !!) and am kind of back at that baseline (being able to use the wheelchair).  But I'm not better (as in there is no more black and I can walk).  

It sucks.  Like a lot.  A wheelchair brings so much baggage with it.  There is nothing that can be found cute about it except that it is black and sleek and because of this consider chic?. 

I could just sit here and cry about life, about the situation.  About how I've had it up to here (touching the ceiling to illustrate the level) and I'm done.   And there are moments where it is so overwhelmingly frustrating that I do cry - which is normal and healthy I feel.  

But I've gotten this far.  There is no way in hell I'm going to let a wheelchair keep me from my life.  And I'm not just saying that to be inspirational or positive or to seem like a badass (though I guess they all could apply).  

I genuinely believe it.  

My life is pretty cool.  And I will get back to living it.  

It's going to be harder.  It's going to take a lot of adaptions and a lot of change.  It's going to hurt, it's going to come with a lot of stares, it's going to be overwhelming.  

Bring it

I'm ready.

Now I'm you'll excuse me, I have some snuggling and netflix to get to.  Loves.