just thinking about being myself

I am returning to writing about my experiences and my thoughts. 

I was just thinking that I'm not a doctor, though I see doctors more than my friends. Since we have found nothing that eases my pain and other symptoms (I'll get into in a bit) I tend to retain a lot of information.

I'll share information, but I feel uncomfortable delving into doctor realm. I'll list some books at the end.

So, I've been suffering terribly. The Fibro, the Sjogren's- all the pain and problems have increased dramatically. I'm on a ton of medication, so my stomach hurts a lot.

I have rashes. They're not just from Lupus. Some are just bumpy with no redness. My other "rash" is what I call toe rot. My toe nails look like they've got the worst case of fungus you've ever seen but it isn't a fungus. And, now I have a finger nail with it. Nothing clears it. And my hair is thinning so much. I used to have full curly hair and now it is so thin many of my barrettes are way too big. I won't go on. It'll bum me out.

Needless to say, I understand what you're all going through. 

I enjoy looking at what is positive in our lives, whether we work or not. I like writing about the little things that make me feel better, like herbal tea and a good book or drinking it on the patio.

I was listening to The Beatles and I realized it's true. All we need is LOVE. We need to love ourselves even though we aren't the person we though we would be. It's tough business.

Before I became "ill" I ran a huge Drama Department. I directed three plays a year and musicals with casts up to 65 students. We had the best time. My children participated. I wrote plays and we produced them.

After I left that job because I was in so much pain I went into a depression. Then I tried working at the continuation high school. I loved it like I loved Drama, but after six months I was in terrible shape. 

Yes, I lost who I thought I was, but if I love myself the way I am now it just makes it easier. Especially my family. I feel so bad when all I talk about what's bad. I am too blessed to be a poor me.

We all feel that way sometimes,  but there are people who will listen, let us vent. There are also support groups on Meetup. I'm in one in the South Bay.

Here are a few titles of books that provide better medical information than an ex-drama teacher/writer:

1. The Sjogren's Syndrome Survival Guide by Teri P. Rumph, PH.D. & Katherine Morland Hammit.

2. The Sjogren's Syndrome Handbook edited by Daniel J. Wallace M.D.

3.A Body Out of Balance by Ruth Fremes,M.A., and Nancy Carteron M.D. FACR

4. Making Sense of Fibromyalgia by Daniel J. Wallace M.D.,and Janice Brock Wallace

5. (my favorite, most helpful book) The Complete Idiot's Guide to Fibromyalgia by Lynne Matallana and Laurence A. Bradley, Ph.D

I hope that one of these books help. I know of several more. Mostly I hope you don't feel alone and you feel love.

peace & love,

sunee