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Dermatomyositis is an UGLY disease. I was diagnosed with it 3 months ago and no medications are helping. Thanks Ellen for bringing it public light. My biggest fear, leaving my 3 kids orphaned. How I found out? My fingernail beds starting bleeding with the slightest bump. I am not giving up hope. But I am giving up the chemo drug methotrexate.

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my daughter and i have been trying for 3 years ,to get leg bracese called helios.so we can go out walk in the yard and walk in the mall and stores like normal people until we get them we are stuck in the house it will cost 22,ooo.oo for the braceses and more for the plain ticket to stay one weel in another state,and money for food.we have c.m.t.mitch warner that makes the braceses got the video of us walking and said he could defentley help us.as time goes we will be to weak for help.we have been trying for so long looks like we wont know how good it is to have the helios in this life.if you go to ortho rehab design you can view the viseo of the before and afer of the girl with c.m.t. and you can see why we need them so bad please hel us we are so desperate.we are on fixed very low income,...and we have never been on a plain or out of the state.but it would be worth it to walk in our yard.push the baby in the swing.go fishing or even to the gerocery store without people staring and making fun of us.some adults can be more rude then children.strugling to walk make us so tired early in the day,,we do a lot of praying and some day maybe soon god may answer our prayers

i'm sorry i missed this episode! most people have never heard of this disease, including myself, until i developed very painful/weak muscles and a terrible skin rash as well as swollen eyeballs! I went to the emergency room, a dermatogist 2 times and a dr filling in for my pcp within 6 weeks. my blood work was finally taken and my pcp was the one who gave me the diagnosis. he referred me to a rheumatologist; the other drs had me on low dose prednisone and i had already gained about 8 lbs. i remember telling the rheumatologist that as long as he didn't have to put me on prednisone for anything, i would be fine. he had my blood taken and then came back into the exam room and confirmed the diagnosis. He informed that to prevent me from going into a wheelchair within the next weeks, he would need to place me on a high dose of prednisone for a period and would then need to add methotrexate. he asked when my last female exam was because this disease could be associated with ovarian cancer (haven't been diagnosed with this yet). he also informed that i could never, ever be out in the sun. i burst into tears; i was 36 yrs old, a size 6, drove a convertible and my life changed at that moment !

i was on prednisone for over a year and gained about 40 lbs. I eventually lost the weight once i came off of it but my current size 10-12 body will never see a size 6 again! I take methotrexate and generic plaquenil and probably will need to for the rest of my life. But, this disease is under control - it does not consume me ! i work out regularly, to keep the muscles strong. no, even with the 100 spf sunscreen, i absolutely cannot be out in the sun - it wreaks havoc with my skin. but, thanks to the advancement in spray tans, i can still get tanned. i look at this way - maybe i'll never look old & wrinkly !!??!! i just don't plan alot of things from mid april thru sept but, since the sun is further away after these mos (i'm in TN), i can easily stay covered and be outside with no probs from oct thru mid april (wearing sunscreen and 3/4 length sleeves).

Ellen, I am a little late responding to your video on DM but I just reviewed it on TMA. Thank you for bringing our disease to national tv. I was diagnosed in 8/07 and continue to challenge doctors with ways to treat me. Just when they think they have it figured out the disease takes a different path. Its ok, I have been complex my whole life! Thank you again for the awareness of our rare disease. I love to dance and the disease has tried to steal my skill, but I now use a bar stool-its much easier to hold my cosmo!!! Love ya, keep spreading joy, Respectfully, Jennifer Brokaw, Amston, CT

Unfortunately, I didn't get to see the segment that is being discussed, but I will be searching the TV listings for a chance to catch a repeat.... I am an RN. I noticed sl. muscle weakness in my legs corresponding with a rash, that sent me straight to the doctor to fill in the missing pieces to this puzzle--a cluster of symptoms I had never dealt with in any patient I had cared for in the hospital, was looming like a dark cloud over my head. To make a long story shorter, after 4 different doctor's visits, I lucked on to a wise Dermatologist who solved my mystery after a 15 minute physical exam and some blood work. I have been a practicing nurse for 25 years and had never heard the word, "Dermatomyositis" before - -so it is indeed uncommon. My dx. was 12/23/08 so I am a "newby" with this battle. Thanks Ellen, for your show, and the help and entertainment you provide for your viewers. I pray I can write back someday with an encourageing story of my own! God Bless You!!!!

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I was diagnoised with dermatomysitis when I was around 9. For years, prior to this dozens of doctors told my parents that nothing was wrong with me. It was even suggested that I made up ailments to get the attention that I lacked. Growing up with this disease was extremely difficult. I spent so much time in the hospital and at home. My body was plagued with calcium deposits, my eyes looked as if I had been punched in both of them and soon tiny red bumps developed over both eye lids. From out of no where they would burst and blood would come trinkling down. The first time it happen, I freaked and so did my mom who rushed me to the ER. Soon this did not frighten me. The calcium deposits are in my right leg from the knee up to the hip.I have not been able to bend this leg since I was 9. I also got calcium under both arm pits that prevented me from being able to raise my arms. There are calcium deposits in my right jaw which prevents me from opening my mouth very far. There is a small amount of calcium in my left leg. I have several indentions in the skin which I am told look like bullet holes. I don't know since I have never saw one. I was sick so much and very depressed as a child. It was hard to be different and walk different from my peers.

However, at 15 after coming so close to death, I went into remission. I learned to accept my disease and understand that I had nothing to be ashamed of. As a child, I was very ashamed and self conscious.

My life was great for a long time. I went to college and often worked two jobs for most of my adult life. I have one son and am married to a man that forgets that I even have this problem. He is so use to me doing this and that. Both of my parents who are stroke victims live with us and taking care of them is very important to me. I also work as a substitute teacher. I have kept myself so busy that there was no time to feel sorry for myself. Family members over the years have tried to tell me that I need to take it easy. I did not listen to all those people who informed that I could get disability and should not work. I did not listen then and will not listen now. I make those decisions for myself.

It took me so long because of this disease to feel confident,attractive and worthy of love. Walking with a limp is not the greatest morale booster. Now, not only do I feel that I have beauty inside, I feel it outside as well. I thought that men starred at me due to the limp, later I learned it was because many of them found me attractive. Go figure that one!Life will be exactly what you make it.