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Thread: I feel like a vampire.

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    Unhappy I feel like a vampire.

    All my life I have loved the sun. I am Italian, and my skin would tan to be a beautiful golden brown. Our summer lasts for 6 months in warm, sunny Savannah, and I have spent many a vacation in the beautiful Hawaiian sun, swimming in the ocean, without a thought that my life would be any different.

    One day in August last year, I noticed two red bumps on the side of my breast. I didn't think anything of it, I thought they were mosquito bites. Until they started to spread. Then two weeks later, I broke out into a rash that covered my entire body. Oh my god, was this rash bad. It really was "angry". It was so horrible and scary, and it itched like hell. It burned so much that I used to sit on my couch and melt ice cubes on my arms.

    I went back and forth to the doctor, who had no idea what it was, until last week when I finally was diagnosed with lupus from a biposy. I've had several done, and it was only until they sent it to a lupus specialist that I got a solid answer. I have to go back and get more bloodwork run now. I'm scared of needles, and my veins are very deep, which means more bruising and pain.

    I've never had anything on my face, but my ears have had the rash. I get tired, I have really vidid dreams, and I usually only sleep one night a week all the way through the night. I get excited when that happens.
    My kidney functions are normal, and I don't have any joint pain. I do have Raynaud's Syndrome, but it's interesting, I've had that since I was small. I don't know if I have SLE or just discoid lupus, I have to wait and see what my bloodwork says. I just hate when people stare at me! I'm so tired of wearing makeup on my arms and chest, I used to have wonderful skin! The rash is faded, but it looks like I'm an abused woman with bruises all over my arms and back. I really hope they all fade away.


    My doctor has me on an antibiotic called minocycline, which is used to treat acne. Since I've been on this medication, which has been since June, I have had no new outbreaks and my rash has slowly faded. I used to get spots on my hands just from driving, and now nothing! My doctor said that she doesn't know why this specific antibiotic works, it just does. She's had many lupus patients who have gone into complete remission while on the drug. There are no side effects and it doesn't build up a resistance. I'm hoping that I can just stay on this medicine and not have to take any of the other ones that sound so horrible. Has anyone had any experience with this drug? I've read that it can cause drug induced lupus, but also have heard wonderful feedback from lupus patients who have gotten their lives back.


    I haven't been in the sun at all this summer. It sounds like nothing, but it is very depressing to me. I miss the beach, I hate having to sit at home by myself while my friends all have fun!

    I've never been sick before, so this is really new to me. Any advice, or ideas on how to cope with the lifestyle changes are welcome! Thanks for letting me vent my story.

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    Hey Dixie!

    I was always a very "outdoorsy" gal myself (I'm also a Georgia Peach ), not much of a sun worshipper...but I loved being outside. When I got my diagnosis of SLE a few months back, I went nuts and hid in my house all day.

    After talking to some family members who are photosensitive (all have Lupus to some extent), they told me that I didn't have to TOTALLY avoid the sun...just to use SPF protective clothing, sunscreen, and stay in the shade when I could. I found this site:

    http://www.coolibar.com/

    They have the CUTEST SPF+ clothing...I love their sun hats. I use an SPF of at least 75 when I go out, and try to time my excursions for either earlier or later in the day (not for around noon when the sun is at it's worst). I also keep myself very well hydrated...and have had no problems since. I even went to the beach (under an umbrella most of the time), and got in the water with my SPF+ clothes on...looking mildly goofy (hey, gotta be honest), but I kept my health in mind and cared more about that.

    It's a lifestyle change that is no fun, but you can live with it. This is what worked for me...now find what works for you!!

    Best of luck, and welcome!
    Blessings,
    Carrie


    "I feel like I'm diagonally parked in a parallel universe."

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    Hi Dixiewolf,
    It's such an adjustment, isn't it?? I am pretty new to the whole lupus thing too. The photosensitivity kicked in this spring for me, and it was hard for me too. I am a gardener, it's my sanity place, my time with nature... with God. Having to stay in the shade, and have long sleeves on and hats... ugh. There are varying degrees of sensitivity I hear, and I have it pretty bad... even five minutes in the middle of the day, and I break out in blisters and sores. I used to have beautiful skin too. I never wore makeup in the summer, just had a nice tan, and threw on some lipgloss...
    I hope you're able to be out more than what I can be, after 4:00 is best, and always wear sunscreen..
    Also, check out the sticky notes by Oluwa... really helpful and encouraging!
    It's a mental adjustment, for sure, but you can do it!
    Still go to the beach, just after 3 or 4, wear lots of sunscreen, use a beach umbrella...
    Doing those things that make us feel "like us" is very important. You can't ignore your mental health for your physical self, they are connected!
    God Bless,
    Deb

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    Hey Dixie,

    I was diagnosed with lupus when I was 17 and I used to tell the doctors I felt like a vampire when they asked me how I felt. Ive never heard anyone else say that before, I say that to say I completely understand how you feel. I dont nor have I ever gotten a rash on my chest or arms. My face broke out really bad when I first got lupus liike acne and I went to a dermatologist and she fixed me. I had scars all over my face and they faded on their own after a while. So I think you will be fine and your skin will go back to normal. You do need to be careful in the sun, you'll need to wear sunscreen everyday even when the sun isnt out, the uvb ryas on the days the sun doesnt shine are the most harmful. Im sorry to hear you are having such a tough time right now, hang in there things do get better.
    Live, love, and most importantly be grateful!!

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    hi dixie,

    welcome to our family....you will find answers to your questions, and compassion for your worries. please make yourself at home, browse around, and join in whenever you want.

    i too, am a georgia girl, atlanta since 1996.

    we have other members who have only discoid lupus, and we have some who suffer from both discoid and sle....i know one of them will be around very soon to compare notes with you. I don't have discoid, so i can't offer any advice. I have heard of cases where the discoid eventually leads to sle, but there are also cases where it does not. If you dr. says he has patients who go into remission with this antibiotic then that will be great....it is a shame that it can also cause drug-induced lupus....that is a real bummer.

    good luck, please keep us posted.
    Phyllis

    share a smile today

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    Hi crmj1183,
    My neighbor started calling me "vampire" this summer when he'd see me out in my garden at 9 at night... Too funny! Glad to know I am not the only one...LOL
    Deb

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    I've been living with Lupus for over 25 years and this summer has been the worst summer I've had in over 25 years. Even when I was at my worst with this disease, I could at least still enjoy some sun. However, this summer has been one where I cannot tolerate the sun at all! So, like you, I call myself a "vampire". I love to swim, so lately I've been doing this after the sun goes down. Most of the time, I am indoors, chomping at the bit, waiting for the evening to come so that I can at least go outside and sit for a bit.
    So, you are not alone...in fact, you may meet lots of "vampires" here.
    Most of us, when we do go outdoors, carry around our own shade!
    Our lives now revolve around protecting ourselves from the sun and avoiding those things that can cause flare-ups. Even so, it is still quite possible to enjoy yourself and find things that make you smile. We will help you to do that also!

    Welcome to our family
    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    might as well call me a georgia girl, I am 5 minutes from Augusta Gerogia, spend most my time there....Even though I am in carolina....

    Welcome to the family,
    there are lots of wonderfull people here and lots of great advice...

    hope to get to know you better soon....
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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