You say Bellagio, I say Aubagio

Which ones do I pick I thought out loud to myself.  I am looking lovingly at my collection of knee socks.  If any of you have ever done Crossfit with me, you know how I love my knee socks.  I have a pretty awesome collection.  Unfortunately, due to things going on with me physically, I stopped going to the box, and subsequently stopped wearing my beautiful socks.

But I have been feeling steady enough to get my butt out in the garage and come up with some workouts to keep me sane until all of the medical stuff we have decided to do starts making me feel human again.  So I went into my sacred drawer of sock.  I whispered "hello beautiful" to all of them, missing wearing them and getting my sweat on.  Today I decided it was time to break out a pair, and get my butt into the garage ASAP.  I need working out to stay sane.  I understand, through all of the research I have done, it will do wonders to help me now, while this disease is playing whack a mole in my brain.

See when I started Crossfit 5 years ago, and I know I said this in my last blog, I told the box owner I wanted to be in the best shape of my life in case MS decided to cause me problems.  How prophetic those words turned out to be!  But in hind sight it was a blessing that I got myself mentally and physically tough.  I have needed it, and am going to need it more than ever I am afraid.  I think I would look forward to doing the Memorial Day Murph more than what is in front of me, but doing the Murph all of these years has gotten me here and ready to tackle the challenges ahead.

We learned at my Neurologist visit yesterday that I actually have an active lesion going on in the right half of my brain, hence all of my left side issues now.  A lesion the doctor said we had to tame immediately.  When she started talking about cortisone I panicked.  I saw what it did to my dad.  I have been macro counting like a maniac and losing weight.  Last thing I wanted was that big pie face dad would get.  Or all of the weight gain. Oh the vanity issues.  But the Neuro said I would have to be infused, three days in a row to get this under control.  No oral steroids over a longer course would calm this down right now.  Fabulous.  Ok, I get three days of Solumedrol pumped through my veins.  That's exciting.  Then we moved on to long term treatment.  I asked about the first line drugs, the ones that are supposed to be a little easier to tolerate. The side effects are supposed to be pretty mild. By mild I mean flu like symptoms for three months, stuff like that.  Unfortunately, due to the scleratic lesions present on my Cervical spine, which my MRI showed so beautifully, she said she was concerned that my next active lesion would be on my spine, and in a place that would incapacitate me.  Say again? Incapacitate me?  She said of course we could try the injectable, first line drugs if I felt like that would be what I preferred to do, but she felt like one of the oral ones, due to the previous activity on my spine, would be where we should start.  I countered with what about PML, that's the brain infection that leads to death?  She pointed me to one in particular that doesn't have that risk. She took her time and answered any questions that I, or Brad, had.  Great dialogue, didn't talk down to me, you could see she was impressed by my knowledge, and truly tried to be as informative as she could be without pushing me in any direction.  She sent us home with information to go over and I had to call today with what I chose to be treated with.

Cue the stupid musical loop I created from the name of the medication.  Aubagio.  You say Bellagio, I say Aubagio. You say tomato, I say tomahto....let's call the whole thing off!  Yes, let's do that. While I'm at it, I'd like a dog rescue to retire to too.  If wishes were horses, beggars would ride right?

I am kind of at an angry phase presently through all of this.  I stopped going on FB because you know what? I don't want to see people hitting their PRs at a WOD, or while lifting weights.  I am too busy feeling sorry for myself to cheer you on.  Can't you see I am miserable here?? I get even more pissed when I see someone bellyaching over something stupid.  Are you worried about walking, or seeing, or feeling your feet?  No?  Then stop your complaining for the love of all that's good!!  I hate seeing workouts that I would give my right arm (that's the one that is stronger too) to do, knowing right now (see trying to stay optimistic, because this is only temporary right?) that would be as impossible as me tight rope walking across the Grand Canyon.

I could write a whole blog over what every day is like.  How I sneer at the stairs as I stand at the top one wondering when stairs got so scary to walk down.  Or how I feel like I need a V8 most days.  My favorite is when I feel like I am walking on ice AND need a V8.  Makes walking so much more exciting.  Most days my left leg feels like it's a tree trunk, heavy, wooden, and it doesn't like to pick up much.  It's a good thing my left toes are so completely numb because I stub them quite a bit.  I guess I didn't realize how numb my left side had gotten until my daughter said in total amazement, how are you touching that?  She was referring to the noodle I just plucked off of a spoonful of them I had just taken out of the boiling pot of water to test their doneness.  I thought what is she talking about? Until I burnt my tongue when I popped the damn thing in my mouth.  Ohhhh, you mean the nuclear hot noodle?  It's my super hero power don't you know.  I'd rather be able to turn invisible.

Well enough of that.  The infusion center called, I have to go the week of 5/31 and get my infusions done.  Of course it is at the Bon Secours Cancer Center.  So there was my kick in the ass to stop with my pity party and quit complaining.  This could be so much worse.  I know people so much worse off, I am truly blessed.  It was my smack in the head, thanks I needed that moment.

Being blessed is a condition of the heart and a frame of mind~Erinn Rhorie