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Thread: Introducing Myself

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    Default Introducing Myself

    Hi my name is Eva. I am 23 years old. I have had lupus since I was 17. About two or three years ago I was diagnosed with pulmonary hypertension, not knowing what could have caused it but the lupus. I am basically here because I would like to meet some people that have lupus like me.

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    Hi Littleone13,
    Welcome to the site. My name is Kathy. I have SLE, Lupus and well have had it for years. I will be 50 in December. There are a lot of good folks that come in here.

    I am wondering are they able to control the Pulmonary Hypertension with medication? I sure hope so. I just want to welcome you to the site.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Hey littleone13,

    Nice to make your acquaintance. How were you diagnosed when you were 17? It is great that you had the dx when you turned up with hypertension, though.

    I look forward to getting to know you better...so welcome. :lol:
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    nice to meet you girly .....im sandra im 25 married two kids. what about yourself.......... hope you have a good one

    god bless
    The boundaries which divide life from death
    are at best shadowy and vague.
    Who shall say where one ends,
    and the other begins?

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    Hi Eva..

    Welcoming you with a tight hug...squueeze...

    We have a wonderful group, family here to meet. Chat up, read about...ask, jump in, advise, share.. We all learn from one another.

    See you on the boards...again, welcome.

    Be well...sweet dreams.
    Oluwa
    I have Lupus. So *^#@! what.

  6. #6
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    Default Hi

    Quote Originally Posted by KathyW1958
    Hi Littleone13,
    Welcome to the site. My name is Kathy. I have SLE, Lupus and well have had it for years. I will be 50 in December. There are a lot of good folks that come in here.

    I am wondering are they able to control the Pulmonary Hypertension with medication? I sure hope so. I just want to welcome you to the site.

    Hugs,
    Kathy
    Well it's good to see that people can live awhile with the lupus. My doctors have told me that I could live long if I just take care of myself. It's just so hard sometimes. I mean since year 1998 something has been wrong with me. In '98, I had my appendix taken out, 2000-2001, I was diagnosed with lupus. Since i have been diagnosed with lupus, I have had my right great toe amputated, my left kidney removed, right foot amputated, was diagnosed with Pulmonary hypertension and am still waiting on right knee and hip replacement. I'm 23 and in a wheelchair. I have a four year old daughter, which they didn't think she would make it. As for the pulmonary hypertension, I am taking this $4,000 a month medication. We are testing it right now to see if it good for patients with ph. :?

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    Hi Eva,
    I am sorry to hear what has happened to you with losing your right foot and kidney. I hope that you get over this bad time in your life and that life gets easier for you. I hope that the medication works for you and is good for the treatment of Lupus.

    I have good days and bad days. Right now I am getting over a very severe cold and right in the middle of a flare that has my wrists and knees and legs hurting terribly. I just have to wait out and hopefully it will subside or I will be back at the doctors again. I am an old timer lol and yes it is definitely not easy to live with this rotten disease, but I do the best that I can. I am very lucky to even be alive. I nearly died in 1996 when the Lupus attacked the heart muscle big time. I got over that and well I am doing ok.

    I hope that you are feeling ok today.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Quote Originally Posted by sick n tired
    Hey littleone13,

    Nice to make your acquaintance. How were you diagnosed when you were 17? It is great that you had the dx when you turned up with hypertension, though.

    I look forward to getting to know you better...so welcome. :lol:
    When I started getting sick, I didn't know it was lupus. I was in crutches for a cracked bone on my foot and a sprained ankle. Then, I was going straight home from school and going strsight to sleep. I didn't go and do the normal things I would go and do with my friends. Then, I didn't have the energy to get up and go to even stand up and I couldn't even keep water in my stomach.

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    Quote Originally Posted by KathyW1958
    Hi Eva,
    I am sorry to hear what has happened to you with losing your right foot and kidney. I hope that you get over this bad time in your life and that life gets easier for you. I hope that the medication works for you and is good for the treatment of Lupus.

    I have good days and bad days. Right now I am getting over a very severe cold and right in the middle of a flare that has my wrists and knees and legs hurting terribly. I just have to wait out and hopefully it will subside or I will be back at the doctors again. I am an old timer lol and yes it is definitely not easy to live with this rotten disease, but I do the best that I can. I am very lucky to even be alive. I nearly died in 1996 when the Lupus attacked the heart muscle big time. I got over that and well I am doing ok.

    I hope that you are feeling ok today.

    Hugs,
    Kathy
    I am doing okay today. Thank you. Yeah my bones tend to hurt alot around the cold season. They hurt during the summer as well, but not as much. Have you ever been on remisison since you've had lupus?

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    Hi Eva,
    I believe that I had several remissions as the disease was mild from the time that I was a child until I hit 35 years old. I mean I had seen doctor after doctor only to be told time after time that I was stressing and worrying needlessly and that I did not have Lupus. It was horrible. Unfortunately at the age of 35 I contracted a severe case of the Chickenpox and that is when my health went straight down hill and led to me getting diagnosed with Lupus and a host of other Auto-immune disorders. I believe the Chickenpox exacerbated everything dealing with the Lupus. After the Lupus started attacking my heart muscle they decided that there was something seriously wrong and I thus got diagnosed and put on several medications. I don't think that I will ever truly achieve a true remission, but you see the disease is cyclic big time between flares and remissions. I asked my doctor about one day getting off of the medications and he told me that in my case that will never happen. That was real depressing to hear, but that is life and I deal with it the best that I can. I think the biggest thing to avoid if at all possible is stress and boy with this illness that is hard to do sometimes. I hope that you can get into a good remission and that it lasts a long time with you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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