of my last blog post, where I talk about my skin clearing up and feeling better. Not so anymore :( My skin has really gone off the deep end, my face, neck chest, belly and back are all covered with angry, red, painful rash. Man, it hurts. I can't really find any cream or anything to make it feel better either, though some salves have helped a bit.
I have added another doctor to my list, this one is a Holistic Dermatologist named Dr. Dattner. I had an appointment with him a couple weeks ago, and I'm hopeful that he will help. He is helping me deal with the disease from a nutritional perspective and we're working on decreasing the inflammation using supplements and eventually some dietary changes.
But in the meantime, I'm coming here to whine. It hurts, it really does. And I want to itch it...which makes it hurt more. It feels like bad sunburn all over. Totally sucks.
I'm still on the Prednisone, have gradually tapered down to 8mg (going down a mg a month), and am also still on the Plaquenil. Besides the skin, I feel fine, no aches and pains. My hair is even coming back somewhat, so that's great.
I may have to change the name of this blog though...Dr. W told me at my appointment that I don't technically have Lupus, rather I have Mixed Connective Tissue Disease. This is most likely good news, MCTD has a lower chance of effecting my internal organs, so that's a big relief. It's even more amorphous than Lupus though, so it just makes is seem difficult to fix. She also said I have indicators for Sjogren's, so that can jump on the list, too.
Mentally I'm feeling pretty crappy these days. I've had to accept the fact that I just can't get as much done as I used to. Spoke to sweet hubby and basically told him we're just going to have to deal until I start feeling better. All this on top of work and Christmas right around the corner, arg, lots going on.
3 comments:
I just found your blog today when Google Alerts picked up on your use of "MCTD" which it emails to me. I read through many of your posts and experiences. It was very interesting and revealing.
It's kinda cool to see that there are other people out there who understand things like what it feels like to be on Prednisone or to endure the evening pain and fatigue. Outside of pain, my symptoms are quite different from yours as I've had very little of the skin impacts.
You have motivated me to both start a blog and to actually start a journal which I've been needing to start for three years. I hope you are feeling OK today.
Dear Kristin, your mom sent me the link to your store, which led me here. My daughter had skin issues, which led her to a lot of research on the imbalance in the typical American diet among omega 3 and 6 fatty acids and the resulting inflammation. I'm sure this is all well known to you by now. I hope the new doctor is helpful. I know a good one in Ewing, NJ, not far off 95, if you're ever in the market again: Daniel Jass. Wishing you the very best from the original Willow.
Dear Kristin, I happened to have an appointment with Dr. Jass myself this week, and talked about omega 3 supplements. He recommends 10 g per day, and likes the Coromega brand (my favorite is Chocolate Orange-flavored), which works out to four packets per day. It couldn't hurt, I'm pretty sure, and might help. Hoping you're feeling better, Willow
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