Wednesday, May 21, 2014

'Roid Rage

MS is making me really pissed off today. As it turns out, they don’t call it Relapsing Remitting MS for nothing. And right now, I am sitting in the Intermountain Medical Center Infusion clinic, hooked into an IV that is pumping Solu-Medrol into my left arm.
Our bodies are so strange. The medicine going in my arm gives me a horrid taste in my mouth. The nurse gave me Jolly Ranchers to suck. They are supposed to help with the old-penny flavor. And they do. A little. But I am still really pissed off.

The steroids are to treat the first R of RRMS. I am having a relapse. The vision in my right eye is blurry. Cloudy. Smeary. And that cute little light is back in the corner of my vision at night. And when I say cute, I mean really fucking annoying.

I warned you I was pissed.

Then there is the pain. I’m having previously un-experienced joint pain. My GP ruled out arthritis, mostly because Advil doesn’t touch it. And it is on my right side, under the broken eye. So now I am on medication that eases the neurological pain and knocks me out at night. Then I am on medication that wakes me up in the morning so I can work.  I’m taking medication to treat the side effects of my medication. Better living through chemistry.
I am 100% sure that this latest little MS gift is stress-related. These last couple weeks, I have been experiencing intense, soul-crushing strain from all sides. Work has been crazy. Skating with a blind side is incredibly difficult for me.  (I can barely skate with both eyes working.) And there was court. I was called to testify against the man who hurt my Kidlet. I had to spend hours listening to lawyers question my parenting ability and outlining my bad choices. Pointing out my failed relationships and trying to convince me that I am an easily-swayed little girl who will go along with whatever I am told. Saying I play fast and loose with the truth.

And I had to do all that alone. From a karma perspective, I guess I probably had that coming.

I’m happy to say that I shut that shit down, Lisbeth Salander style. I refused to play that lawyer’s game. I got a bit sarcastic. I got a lot indignant. I’m not 100% sure I didn’t cuss. He told the judge I was a hostile witness. He has no idea.
Sigh. How the holy hell did I get here? To this month? To this life?

It’s been a bitch of a May. I haven’t been all that pleasant to be around. I owe a couple apologies. But it’s undeniable. Things are worse. My MS is real, as much as I like to pretend that it isn’t.

And summer is coming.

I’m sitting in this chair watching the drip-drip-drip that is being pulled by gravity into my vein. And this thought keeps running through my head:

I wish I hadn’t said anything. I wish I would have just learned to deal with a wonky eye. I am not at all sure that the treatment--meant to buy me 10 to 15 extra years of mobility--isn’t the very thing that is making me feel so shitty.
Is it really worth 10 years? The last 10 years?

I know everyone is on the clock. Life is fatal. No one gets out alive. I know that. We all have an expiration date. I’ve always known that. But when I would think about my lifespan before my diagnosis, I would picture my time left like the alarm clock on my bedside table. I knew that little clock was there, quietly ticking off the time. But it was small and unobtrusive.  Hardly noticeable. Sure, I knew the alarm would be waking me up in the morning, but why worry about that now? Worry about that in 8 hours.

My clock is much different now. It’s Big Ben. It’s the clock in Grand Central Station. It’s on Spasskaya Tower. These clocks are huge and noisy and obvious. They make their presence known. Their faces are so big that you can actually watch the minute hand sweep around the dial. You can watch that minute be spent.
These are my clocks now. And I fear my next clock may look like it was painted by Salvador Dali.

Drip, drip, drip.

I should have never mentioned it to anyone. I could have just powered through it. No one would have ever had to know.

What would be different? Would I be living somewhere else, with someone else? I wouldn’t be tied to a medical team and my family (the only support I can truly count on). What about that British guy who took me out a couple times but didn’t call again after I told him about the MS? Would he still want to go wine tasting with me?

Would I have the money to take a vacation? The energy? The desire? I just don’t know. And I hate not knowing. Not knowing is torture for me. Knowing is always better than not knowing. Always.


I have completely lost my admittedly-poor ability to hide my bad mood from my kid. He can see right though me, and he knows when I am down. But Mom, he always reminds me, if you didn’t get MS you wouldn’t be in Derby. And that’s kinda cool. It’s kinda epic.

Eff bomb. I hate it when that kid schools me.

But… I love it when he is right.

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