The Real Face of RA and Sjogrens

The Real Face of RA and Sjogren's


Well, friends... I said from the beginning of this blogging journey that I would keep things real. Auto-immune is ugly. It's muddy. There are parts of this invisible illness trip that no one sees, unless you're with me in the middle of the night. Or first thing in the morning when I wake up. Or other times when I'm at home in my PJ's for the third day in a row because my blood pressure is in the tank and I can't tie my shoes. Since my husband is the only person who really fits this description, suffice it to say that he sees things no one else really sees. That doesn't mean it's not there. It means it's part of the invisible illness life I lead. Actually, we lead, my husband and me.

To encourage other CDP's, and to be authentic when it would be so easy to be all rosy all the time, and to let others know that I don't have it all together, the days are hard, and it's okay that the days are hard for you, too -  I'm taking a chance and putting the yuck out there.

Last night brought very little sleep. I don't normally watch the clock, but when I did look at it, it wasn't ever an hour forward than the last time I looked at it. So, nothing more than 30-45 minutes of sleep. The back pain was awful, and it's just me and Tylenol and some Voltaren gel. When the GI issues and dysmotility occurred recently, tramadol was discontinued because it can add to dysmotility problems. Tramadol was recently (2014) re-classified as an opioid pain med, and since that's big news nowadays, I didn't push or question the doctor's decision to discontinue it. I only used it at night, anyway, and not even every night, but it really was discontinued because of the GI issues and side effects. In any event, it's me and Tylenol. And an occasional Nuprin when I risk GI problems from NSAIDs, which is almost never. So this is part of the mud of chronic... no sleep. Those nights and the next days are hard. Really hard. Besides tired, it can make a person short-tempered, which just adds to the discouragement with AI's. Who wants to be crabby all the time, even if it is justified ???

Since I was awake at 5 am anyway, the hubs helped me with some Voltaren gel on my back. I'd use it more often, but I can't reach these places in the middle of my back. And if I over-stretch my arms, the pacemaker butterflies out and really hurts, so positionally, I'm rather limited there. One of the "smaller" inconveniences of RA, except that it means you hurt all the time. But the hubs helped me with some gel, he's always so sweet like that. Nothing says "sexy" like, "Honey... will you please help me with some Voltaren gel?"  Bleh.

Then you wake up and your eyes are stuck shut from the dryness. Dryness of the eyes goes with the aging process anyway, but this is a different kind of stuck together. Sandpaper. I now keep about 4 bottles of saline drops all over the house and in my car and purse. And cotton mouth... oh boy, that is horrible. And your throat stays dry. And sore. Like a scratchy throat all the time. So I keep water beside the bed now. Oh, there's a morning routine for all of this, and it gets better as the day goes on. But the first-of-the-morning dry stuff is horrible. The red eyes more than justify the "Witchy Woman" appearance, and with the crabbiness, who wouldn't think, "Wow, she's definitely on the broom today."

So discouraging....

There are other issues than red eyes and cotton mouth, but these are a few of the invisible things that keep this journey hard. Just hard. Muddy. Yucky.

For all my CDP's out there - keep it real. You don't have to choose only the pretty pictures to share with others. Be vulnerable. Let them see you. One day they may need someone who understands chronic situations in life and isn't afraid to be open and honest about how yucky their journey is. Let that someone be you.

After followup with the cardiologist today, my next Rheumy visit is tomorrow morning. Praying that we don't have to re-start metho. I'll log some updates later this week.



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