ih8lupus
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| Rank | Member |
| Online Status | OFFLINE |
| Member Since | 06/10/2009 10:54 AM |
| Last Online | 09/19/2012 10:26 PM |
| A little about me: | My name is Keely, I am 44 years old. I was diagnosed with lupus about 14 years ago. However, I knew that I had lupus long before the diagnosis. It took about eight years for a positive opinion from a doctor. From the time I was 23 until I was 31 I knew there was something wrong and that it was possibly lupus since my mom has SLE and several other members of my family do as well. I recently found out that I have Chiari Malformation. I am not too happy about it at the moment. But I will figure out how to fit it into my life and the purpose that I have it will be revealed sooner or later. I also have Raynaud's, thrombophilia (MTHFR), spinal stenosis, two bulging discs, spina bifida occulta, spinal arthritis, osteoarthritis, abdominal adhesions, several congenital defects as well as, congenital kidney defects. I know there are a few others I'm forgetting.... My ex husband gave me Hepatitis B while we were married. I do not have a chronic hep b case, luckily, I built up antibodies against the disease and I will never get it again. But, because I have autoimmune conditions and I had a severe hep b illness, I could get autoimmune hepatitis. I just found out I have moderate to severe brain damage in the left occipital lobe and most likely the frontal region, as well (the QEEG did something weird in that area and anything definite could not be determined). I have a 100% learning disability that I did not know about. My IQ is fairly high and my neurologist believes that it is what masked the brain damage all of these years. We have guessed that it happened when I was five or younger. Isn't that crazy? Now, I get to laugh about having brain damage. I don't seem to have any problems other than being a little dingy, some major anxiety and ADHD. <---After finding out that I have Chiari it is possible that it could cause the irregularities seen on the QEEG. I won't know for sure until I see my ADD doc. My mom has lupus, my sister has Addison's, Meneire's, Sjogren's and Schmidt's disease that were all caused by SLE. My aunt died from Autoimmune Hepatitis caused by lupus, many years ago. My mom is one of eight brothers and sisters and every one of them has Hashimoto's or Graves disease as well as type 2 diabetes. I have another aunt who has SLE (maybe something worse, the docs can't figure out what's wrong with her yet) a cousin who has Sjogren's and RA and another cousin with type 1 Diabetes. My grandpa had several strokes. I am certain that they were likely caused by a genetic blood clotting disorder, an MTHFR mutation. He very possibly had lupus, as well. We are an autoimmune researchers wet dream. I have five children, four boys and one girl. My 15 yr old had a very elevated ANA and has seen a Rheumatologist. We are anxiously waiting for the results with crossed fingures. My 14 yr old has hypothyroid. I have two boys who also have growth hormone deficiency. And three of my boys have ADD. One has an anxiety disorder along with the ADD. It seems one may have Bipolar disorder. I am very happily married to a wonderful man who is very considerate, supportive and understanding. He carries me all over the house when I feel really bad, and even when I don't. :) I am so very thankful for him! My oldest son who is 24 gave me a beautiful grandson three years ago. He is about to turn four and I just adore him! My two youngest sons still live at home. They are 15 and 14. They are the light of my life. I have a wonderful family and a good life. |
My Awareness Ribbons
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"Thrombophilia runs in my family and it causes strokes, heart attacks, blood clotting, miscarriages, congenital defects, etc. It took a genetics test to find out about this disease. I wear the ribbon for those who don't know they have this ticking time bomb, ticking away, inside of them. I wear it for my family so they will get the treatment they need to live long productive lives." |
"I wear this ribbon in support of those who struggle with lupus, ADHD, chronic pain and the rare Arnold-Chiari Malformation, as well as all of the other diseases and disorders listed." |
"I wear this ribbon for my sister who has Addison's disease." |
"I wear the yellow ribbon for Hope." |
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My Hugs
 | Sending gentle hugs to all in our Raynaud's group and hoping everyone is enjoying the weekend and feeling well :-). For those I haven't met yet, my name is Jen (jj351) and I am thrilled to have recently become Raynaud Disease Group Leader. I look forward to getting to know everyone! |
| We all face challenges every day. But remember that we all have incredible strength because of those challenges. I hope you are well. |
| Hey everybody.. just passing by to wish you a lovely and OCD free day... remember one day at a time.. it takes small stepts to reach your goal :) .. good luck, hugs! |
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