New meds, self inflicted pain, and a spa

1 May

“Okay, you are off Methotrexate.  Consider that over.  You can’t live like this”  Yay!  But wait, now what?

Now I am on a new medication.  It is a very potent drug that stays in your liver for 2 years.  I don’t believe it is prescribed lightly b/c of the side effects.  But the hope is that the side effects are better than the negatives of Lupus.  I almost laughed out loud as I was perusing Whole Foods looking for the most natural and best ways to eat and live.  It just feels odd to do that then come home to take a drug that is potent and can mix quite dangerously with the drug I just stopped taking last week.  Oh, and I don’t even want to admit how many pills of different things I take each day.  Totally embarrassing.  I am like an 80 year old!

He also told me that I can’t get off steroids yet. Boooooo!  5 months of those boogers and I am ready to leave them behind.  But we will reevaluate in a few months and see if I can stop them.  In the meantime I go in for blood tests to make sure my liver can handle it.  Main side effects are stomach related.  Nothing new here!

Life has not been easy lately.  I have not had a day free of stomach aches and mental confusion and all of the other junk in SO long.  Honestly, I can’t even remember what it feels like to not be sick.  I look like I am my normal self.  I keep up an outwardly normal life.  But I don’t do this to deceive.  It’s my life and I want to do as much as I can to love my family well, love my friends well, keep my body healthy, and hang on for it to be free from this disease.

I am keeping up with all of my classes.  Doc is happy for me to keep exercising.  He is just so wonderful.  Every time I talk to him, he just makes me feel NORMAL!  My latest oddity is that I find myself regularly pushing in on my body deep, deep into my muscles until it hurts.  I clench my jaw, as well, until it hurts.  He reassured me that it was just a way for my body to relieve pain.  By inflicting it.  Odd, right?  So he wants me to get MASSAGES!!!  And they are covered by insurance!!!  So sad for me, huh?!?! 🙂

One more thing: I got a new job!  I am still at Gold’s, of course, but am now teaching a Pilates class at a fancy, schmancy spa on Thursday mornings after the kids are in school.  So good for my body, and maybe I will even get a discount?  A girl can dream!

Last random note, we have taken our entire house gluten free. If you know anything about gluten, you may know that going gf means literally every bit of gluten needs to be gone.  So we are going there.   We made homemade gf cinnamon rolls today. SO delish.  (did YOU know having cinnamon rolls does not mean a stomach ache??  Because honestly, I thought everyone had one after eating those!). None of us miss gluten one bit.  Some day I will share recipes for vegetarian and gf foods…and even ideas for teaching kids to cook and yummy other things.  Today, I rest and take care of the things right in front of me.  Like these sweet 3 people 🙂


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