I’ve been in bad shape since being diagnosed with Celiac disease, which is a reaction to gluten in wheat, rye, and barley, which affects the immune system. I went undiagnosed for a very long time and as a result have a small intestine which is severly damaged.
The treatment is to eliminate all gluten, even trace amounts from one’s diet. I’m very careful about what I eat, but my health has continued to go downhill. I’m still losing weight and feel lousy all of the time. I’ve started reacting badly to other foods too, like soy and dairy, and anything with MSG.
I went to a new GI Dr. to see if he could help me work out what’s going on and get on with healing. He did some tests, but had no answers. In Jan. I got much worse. I started having irregular heart beats (PVCs) and loss of balance, and confusion. It was like my brain was scrambled? I was referred to the Mayo Clinic in Rochester MN.
The Dr.s office was supposed to make the referral to Mayo and send my records. I was told that Mayo would contact me to arrange an appointment within 24 hours. The call didn’t come. I waited a couple of days, then called them to see if there had been some miscommunication. I was told they had no record of me, and was told to have my Dr.’s office call them again, which I did. I got a call from Mayo and set up an appointment for Feb. 6. We made travel arrangements. Then I got preregistration papers in the mail and they all said Mayo Clinic Jacksonville FL. A quick phone call confirmed it.
My Dr’s office sent my records to Rochester, but called Jacksonville. We quickly changed our travel arrangements.
After several tests They couldn’t figure out what was wrong with me, just that “something was VERY wrong”! I was taken off medications I’ve been on for years, and put on steroids, and they are referring me to the Mayo in Rochester.
I gathered up a packet of medical records and results from tests, and slides from endoscopes are being sent to them. The head of the Celiac dept. Dr. Murry will review everything and contact me for an appointment. I’m waiting…
I’m down to 103 lbs. and very weak. I can’t safely go anywhere alone. I hate losing my independence! I can’t seem to focus enough to do any quilting, or much of anything really. I haven’t kept up with my favorite blogs. The people I’ve met through blogs are wonderful people though. I’ve had a few check up on me, and send notes etc.
I got a wonderful care package from Martha at Q is for Quilter, with gluten free foods. Very kind and generous of her…and then today a surprise package came from Barb at Fun with Barb blog. She sent a very sweet note, along with a book : North Carolina Quilts, and a little quilt!
It’s the Pink Lemonade quilt Barb made from Lori’s (of Humble Quilts) quilt along. I usually join in on these and really enjoy them, but just wasn’t up to it this time. I just saw Barb’s quilt on her blog and was shocked that shesent me this little cutie! It’s like sunshine to me.
I can’t get pics to load on my blog..I dunno why? I apoligize for the lengthy post, and for not being able to post a good pic. It seems they changed the security settings here? Doh!