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  1. #1
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    Default newbie!

    So, the first fact about me: I'm not a huge fan of introductions. I tend to overthink my actions and consequently end up looking or sounding exactly the way I didn't want to. But, I promise, I'll try my hardest to make this worth your reading time....

    Since you've already learned that I'm not big on telling my life story [mainly because it should be on a shelf next to the world's longest novel] I'm going to do this "in a nutshell" kinda way... Nearly a year after my initial, hellish symptoms presented themselves, I met with an amazing doctor who could finally give me the answers I had been praying for. By that point, good or bad, I just wanted to give this illness [that obviously decided it wasn't going anywhere] a name. The name was Scleroderma. An auto-immune disease that effects the skin, joints, bowels, and other internal organs. I also was not so blessed with Fibromyalgia and Raynaud's Syndrome. The pamphlets I took home were not exactly happy reading material, but after almost a year of being told there was nothing wrong with me, I finally had an answer, a name for "The Beast" inside me. I was physically sick! Not crazy, not lazy, not weak, actually, truly sick. "The Beast" as it turns out held true to it's nickname, we have been fighting eachother for 6 years now, and there isn't a day that goes by that I don't have to fight back tears. Even after all those years of attempting to "adapt and adjust", it never got easier. Four years after I was diagnosed with Scleroderma, my doctor left the practice I was going to, and I soon scheduled an appointment with a new Rhuemotologist. On my second visit with Dr. C she informed me that my bloodwork had revealed positive Lupus markers. Talk about a slap in the face. I had been living with a disease I didn't really even have. Although Scleroderma and Lupus are very much alike and present alot of the same symptoms, I had been working with a cocktail of medications used to treat Scleroderma, not Lupus. After some initial verbally expressed anger toward my previous doctor, Dr. C set me straight by explaining that for the past few years, my Lupus markers were in fact negative... I was one of those people who didn't have a positive ANA... But that didn't mean I wasn't suffering from some type of auto-immune disorder. So, once again, I put on my big girl pants, did my research, and talked openly to my doctor about my daily issues and how the Lupus was effecting me. Within a few weeks, I started taking Lyrica, Plaquenil [my rx spelling is not exactly top shelf, haha, but I'm givin' it a go] and Nexium. Between the Lyrica and Plaquenil, I surprisingly started to feel a little better. After about a month and a half, my daily headaches subsided, my muscle pain went from throbbing, kill me now, to tender or sore and I seemed to have a little boost in energy. For quite some time now, things have seemed to remain "stable" [knock on wood please!] Although we all know there is no cure. No miracle drug that's going to allow us to wake up with non swollen hands and feet. But there is hope and support. In the end, that is truly what will save you, support and love. It's a pleasure to be a part of this group, I'm looking forward to reading other people's stories and lending an ear for someone in need I'll see ya'll around!

  2. #2
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    Hello Meow Hippie Pants..... (love your name :lol: )

    Just wanted to welcome you and thank you for sharing. That was an excellent introduction, right to the point, uplifting, and some humor thrown in, too. Nicely done.

    I've had Lupus for 27 years, diagnosed in my teens. I've been in it for the long haul, so to speak. I spent the first 5 years fighting for my life, and the next 22 learning how to live with this disease. I have been blessed to be in a remission for the past 12 years and counting........

    I'm glad you found us and shared your post. You'll find many courageous, compassionate, and understanding people on this forum. There is always someone to listen, share, answer questions, and let you whine, when needed.

    Looking forward to hearing more from you.

    Fondly,

    Lori :P

  3. #3
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    Hi Meow Hippie Pants,
    Welcome to the site. I am glad that you found us and that you joined the site. I feel bad for you that you got misdiagnosed, but you see Lupus is a very hard illness to diagnose, because it immitates so many different illnesses. I am glad that they finally got it right and that you are on medications for it now. I have Lupus and have had it for a very very long time. I just turned 50 last month and my Rheumatologist doctor told me that he believes that I have had Lupus since the age of between 5 and 7 years old. Basically I have lived with this disease all of my life. I hope that you keep posting as there are a lot of good folks that come in here.

    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.

  4. #4
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    Hello...Meow Hippie Pants..

    Welcoming you with a warm tight hug....

    I ditto...love and support is your saving from going mad, from getting lost...though I still fall in to the stupid hole. Working on that.

    Know here...you don't have to wear your big girl pants, many times I feel like I am in 2T toddlers. Here any size, anytime is the right pair...elastic waist or zip and snap.

    Again welcome...
    Keep well, be well.
    Love,
    Oluwa

  5. #5
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    Default a big 'muchas gracious'!

    Wow! You all are great! thanks so much for your responses, it's nice not to feel so awkward and alone. I've been reading alot of posts on different topics, and for for the first time, I didn't feel like a freak. I felt like I was the only one "googling" info about nasty face sores, swollen sausage fingers, or stomach bloating and vomiting. Although of course, none of us are close to being happy or content with these super unpleasant ailments, but at least we're not going through it feeling alone and misunderstood


    Thanks again everyone, and don't forget to chat me up :P

  6. #6
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    Hi Meow Hippy Pants,
    Just know that you are not alone and that there are a lot of us. We will not forget to chat you up hon.

    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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