Thank you so much for your encouraging message. Yes, my name is Joni (pronounced Johnnie); Daddy's little girl! About 4 1/2 years ago I developed a tremendous pain in my left leg, had swelling, and it turned many colors. (When I was 20 I had blood clots in my left leg.)My doctor ran some tests, determined I did not have a blood clot. I didn't realize at the time that my doctor had ran an ANA test. Later I found that it was fine, a little high, but not enough to be too concerned about. They finally determined that this pain in my leg and hip, which was preventing me from being able to walk, was an inflammed Syadic(sp?)nerve. (The main nerve running from the spine down the leg.) They put me on Toradol and that seemed to work. Took me a good month, but I could walk without crutches. Had some flare ups for another year, but then didn't have any for quite some time. Two and a half years ago, I was standing in my kitchen when I developed an incredible pain in my right foot. My foot started swelling and on the bottom turned black and blue. I had ripped the tendon in my foot. I still don't have a clue as to how I did that. I begged the doctor not to cast it because I needed to drive. The doctor and I both were concerned because my foot would be ice cold and the rest of my leg would have a normal temperature. It felt icy cold from the inside out. It took me two months, but I finally could get a shoe on! He again, ran another ANA test, this time it came back and the count had tripled from the last time he had ran the test. He hooked me up with a lupus specialist and I've been with her since. I have developed the pretty little rash on my face, neck and leg. I don't get them very often. I still have a pain in my right foot and I move slowly the first 30 minutes in the morning. I also get pain in my right hand from my fingers up to my elbow. They will swell. Since I'm on a computer everyday, when it flares up, I put a brace on.
About 4 1/2 years ago I developed a tremendous pain in my left leg, had swelling, and it turned many colors. (When I was 20 I had blood clots in my left leg.)My doctor ran some tests, determined I did not have a blood clot. I didn't realize at the time that my doctor had ran an ANA test. Later I found that it was fine, a little high, but not enough to be too concerned about. They finally determined that this pain in my leg and hip, which was preventing me from being able to walk, was an inflammed Syadic(sp?)nerve. (The main nerve running from the spine down the leg.) They put me on Toradol and that seemed to work. Took me a good month, but I could walk without crutches. Had some flare ups for another year, but then didn't have any for quite some time.
Two and a half years ago, I was standing in my kitchen when I developed an incredible pain in my right foot. My foot started swelling and on the bottom turned black and blue. I had ripped the tendon in my foot. I still don't have a clue as to how I did that. I begged the doctor not to cast it because I needed to drive. The doctor and I both were concerned because my foot would be ice cold and the rest of my leg would have a normal temperature. It felt icy cold from the inside out. It took me two months, but I finally could get a shoe on!
He again, ran another ANA test, this time it came back and the count had tripled from the last time he had ran the test. He hooked me up with a lupus specialist and I've been with her since. I have developed the pretty little rash on my face, neck and leg. I don't get them very often. I still have a pain in my right foot and I move slowly the first 30 minutes in the morning. I also get pain in my right hand from my fingers up to my elbow. They will swell. Since I'm on a computer everyday, when it flares up, I put a brace on.
I have been taking "Gotu Kola" (an herbal remedy) and it seems to help with the swelling in my foot and my hand. I quit taking it for a week and yesterday the pain and swelling came back in my foot. So I believe it works. Silly me, I wanted to see if it was the Gotu Kola that was working or the Aleve!! Guess I know now. So I'm back on it.
The Lupus doctor was pretty sure I had lupus, but she kept waiting to see if I developed anymore symptoms. I really haven't developed anymore, but my ANA really zipped up when I was tested back in May. Just more tired. This week, for the first time, I had pain in the tips of my fingers on my left hand. That didn't feel too good!! But I only had it for a short time and I haven't had it since. Such a strange disease. My doc didn't put down lupus as my diagnosis for a long time, even though she had told me that she was positive that was what I had. So I hung on to that little ray of hope that I didn't have it. That tomorrow I would wake up and be just fine. Of course, that day hasn't come yet. So when she put down my diagnosis as SLE, all my hopes went out the window.
But your message here is really encouraging and I know that I don't have it as bad as some, but I just couldn't get past seeing the diagnosis. Of course, I have been so tired and my husband has had a very hard time dealing with me being so tired, it had just seemed that my world was falling down all around me. I've told him that I sent a message to you and received an encouraging response back. I don't have a computer at home, but when he gets back home in a couple of weeks, we're going out and getting one so I can communicate with you and others more.
I have read a lot of messages and everyone is so incredible. If I don't find a local support group to meet with, that's okay, because I feel that I have found a great support group right here. I never thought I would be communicating on the internet like this...but it really feels good to talk to someone who understands what I feel. Thank you so much.
I have a wonderful 15-soon-to-be-16 year old daughter, Ashley, who is so supportive of me. I really don't know what I would do without her. My husband travels and is gone usually for 2-3 weeks at a time and then home for maybe a week and then gone again. I've always handled most of the responsibilties; anything to do with his business, running our home, taking care of my daughter, and working. My husband just isn't used to me not being able to handle everything right now!! Of course, I'm not either. It's a big adjustment.
Thank you again for your encouraging words. You will never know how much it meant to me. I haven't made it all the way through you website, but from what I've seen, I love it.
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