Stepping up the game..

Ok body…here comes more of the big guns.  Friday is medication night.  In the last exhausting rounds of medical appointments and tests, it has been determined that my eyes are better, I have minimal inflammation and no bleeding, but I still feel like crap and my other symptoms of sarcoidosis are worse.  And that I am having bad side effects from the oral form of the latest treatment, methotrexate.

I actually had to skip my last weeks dose of methotrexate because my immune system was so low, I developed an infection in my mouth and throat, thrush.  I still have a little bit of it, but its important that I get the dose of methotrexate in my system today as the symptoms of the sarcoidosis are severely limiting my quality of life.

The past week hasn’t been much fun.  I’ve just felt overwhelming fatigue.  Like all the energy has been sucked out of my body.  Fibro fatigue is different from sarcoid fatigue.  With fibromyalgia, it feels like walking through jello, like you are constantly swimming against a current.  With sarcoid, it feels like your limbs are made of concrete.  Like every movement is taking every bit of energy.  Every large movement at least.  Typing isn’t so hard, but I can only do it for a short period of time before I have to stop.

With fibro, I don’t think I have ever gone “lights out”.  What I mean is that I’ve never had the sensation that I am falling asleep and there is nothing I can do about it.  But that is exactly what has been happening with me in the past month.  It first happened the second week of August.  I was fortunate to have hired a babysitter to watch my daughter while I slept. And it happened again today.  I fell asleep right at this computer, and woke up two hours later.

So tonight, after I make an amazing dinner with my husband, that I hope to keep down, I will switch to the injection form of methotrexate.  Yes, I’m nervous.  I’ve given myself migraine shots before, but the bottle has “cytotoxin” written all over it.  Yes, I’m a nurse.  I used to give shots all the time.  But there is something about giving yourself a shot of chemotherapy, albeit a baby dose, that is a little unsettling.

And whatever side effects I experience, well, my husband is here.  I hope that it is minimal as compared to the oral dosage.

Oh, and I’m still on the dreaded steroids.  I hate that shit.  With a passion.

So my goal for the weekend:  get my treatment without major issues.

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