Sadly, when you're sick with an aggressive disease it doesn't matter how dedicated you are to your craft, you can't always practice it daily. Fortunately it is waiting for you when you can.
I like this picture of me, which is strange because I almost never like pictures of me. It makes me sad now. Or, rather, bittersweet, because I still like it but I wish I still looked like that.
It has nothing to do with age. This picture is maybe 2 years old. It is from my disease. My cheeks are full and round now because my partoid glands have swollen (and others, I'm sure) because they no longer produce saliva.
The lack of saliva have caused the glands to get get inflamed, hence the swelling. My eyelids droop from a similar problem. And these things aren't just cosmetic, they hurt!
Losing so much of my hair has been the hardest for me. I had thick luscious hair that I (usually) appreciated. I only wore it shorter when I first got sick for ease in caring for it. I didn't want to blow dry a full head of hair everyday and I knew I would if it were longer.
So, I'm bummed out today. My body hurts all over- hips and lower back; entire left leg and foot; left elbow to wrist; right shoulder; right side of my body; neck; migraine, and i'm so sensitive that if you touch me it hurts. Oh, and my swollen cheeks look stupid and hurt.
Not that I wanted to write a laundry list of Sjogren's sufferer's average pain, but it isn't a bad idea to let everyone know what's up with that.
So, I just finished infusions that gave me a week of horrendous side effects and tomorrow I have a procedure at the hospital that might have me staying a few nights at the hospital. It looks good for an over-nighter (or more). Yay.
The fun never ends for us. That's why I'm going to host a fund raiser in the new year. I don't know what kind, but I'm going to do it. I'm going to get the word out about Sjogren's Syndrome.
peace and love,
sunee
