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Thread: Hey everyone

  1. #1
    Join Date
    Dec 2008
    Thanked 0 Times in 0 Posts

    Default Hey everyone

    So I finally decided to join this, I know it sounds stupid but I actually felt stupid for having Lupus and I never wanted to join one of these sites before. I finally decided it's time to talk to other people with Lupus.

    So here is my story. I was diagnosed at 19 (I am almost 23 now). I made it through my freshman year of college before I was diagnosed. My freshman year was the last time I can remember that I was truly happy. I was very very sick for almost 3 months, was on prednisone and put on plaquenil. Eventually after losing TONS of hair and TONS of weight I got down to 94 pounds and I am 5'3 (for some reason prednisone has the opposite affect on me and I don't eat anything), I got out of my flare and was fine did not have one symptom, all my hair grew back and I was okay, for a little over a year. Then the summer of 2007, round two begins (and it hasn't ended yet). I now have rashes which I never had before, my hair keeps coming out, I have been on pred. for over a year now. I am finally down to 5 mg and now I am on Imuran as well which doesn't seem to do much. My white blood cell counts get too low then my red blood cell counts get too low, then we have to get off Imuran bc its dangerous and then we have to raise the pred. Like COME ON I get one thing corrected and another one goes to shit.

    So here I am, sick, Been to the Er to get solumedrol injection, protein in my urine, I get to see a nephrologist on Monday, which I am a little nervous about (first time), I get to see my Oncologist (for blood disorders) on Tuesday and my Rheumy on Thurs....I say this on a weekly basis that my life is spent waiting. Waiting in Drs. offices all week long.

    The hardest part, isn't the being sick or all the dr. appts. or feeling alone, as stupid as it sounds the hardest part is seeing my looks go to shit. I am 23 years old, I shouldn't have clumps of hair falling out or a fat face covered in rashes. Thats the part I can't deal with. I can deal with painful joints- I can hide that- I can act like that doesn't exist- but when my outside starts to match my inside thats when I have a real problem with it all.
    I don't leave my house-unless absolutely necessary, I have alienated all of my friends, and I only talk to my mom, dad, and sister. They are the only people I have left in my life. I just don't want to be around people, I don't want to explain what is going on, I don't want them to look at me and think wow she used to be so pretty and now look at her.
    Who is ever going to want me? I am going to be single and lonely the rest of my life.. It sounds self absorbed I know, but thats just the way I feel, Who is going to want a balding fat rash faced girl? Nobody. I don't care how good my personality is or how funny I am, nobody is ever going to find me truly attractive. The only people that ever said bald is beautiful are the people that are bald. No man would say that. I am not trying to offend anyone, I am just having really hard times when it comes to my appearance-I used to be a model, I actually won best hair award in high school- NOW WHAT. Best shiny head?
    I am unbelievably depressed, and I don't even think the depression meds help, nothing helps.

    I don't want to do this anymore. I can't imagine living the next 50 years like this, its only been 3 years and it feels like a lifetime.

    What's the point of living a life where all I do is feel sorry for myself and sit on the couch all day long.

    I am beyond frustrated. I have NOTHING to look forward to and I honestly mean I have NOTHING.

  2. #2
    Join Date
    Jun 2008
    Thanked 1 Time in 1 Post


    I just read your post. I want to welcome you to the site. My name is Kathy and I have SLE Lupus and have had it for at least 44 years. I feel sad for you and I do understand how you feel. Lupus is an ugly illness. I know about the hair loss and the face rashes etc. You know though you can not base a relationship on looks. Folks that only go out with a person based on looks are the most shallow baseless people on earth and they are not worth a flip. I have been married for nearly 26 years, so I know that there is hope for you. Please do not give up on life. We are all here for you and we all care about you. Please keep posting.

    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.

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

  3. #3
    Join Date
    Dec 2008
    Phoenix, Arizona
    Thanked 22 Times in 19 Posts


    My heart breaks for you! I understand how you feel....I really do :cry: I started getting sick when I was 22 and I will be 30 in June. It is a very scary disease that changes so many different aspects of your life. You have to adjust how you function on an every day level, your looks change with flares and sometimes the medicine seems to make things worse, not better.

    I am happy you are here because you are not alone. You are with a group of people who have the same worries and concerns as you and feel lost and frustrated and at times feel like giving up. But, we are all here to support each other and to get you through the hard times and celebrate the wonderful times......and yes, there will be wonderful times

    Time will tell with every thing and medicine can be adjusted, taken away or even added to fit your disease right now. Please do not give up! You will also find love. Someone will sweep into your life like an angel when you least expect it! I have been dating the same man now for 2 years and he is my hero! We found each other when we were both ready and not looking. Believe in it and it will happen!

    Please, keep talking to us and we will help you get through this! Be patient and believe in yourself and every one around will be surprised
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

  4. #4
    Join Date
    Dec 2008
    Blog Entries
    Thanked 81 Times in 70 Posts


    Welcome to the group.

    I am sorry that you are having such a difficult time. I have found a tremendous amount of knowledge and support within the kind members. Please keep are welcome to share good and bad days with us.

    Share a smile today,

  5. #5
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Dear Sickntired;
    Your moniker is our mantra. We are all sick and tired of being sick and tired. However, we are here to support each other, to make sure that we all know that none of us is alone. You are not alone. You are suffering from a disease that is relentless and, on top of that, suffering from side-effects of medications. It can, at times, seem hopeless. But the truth is, it is NEVER hopeless. As Danica01 mentioned, medications can be modified and tailored to fit you and your symptoms. It may take some time, but it can happen.
    It is entirely possible that you will be able to get your symptoms under control with the right combination of medication and the right lifestyle changes. We are all here to help you as you navigate through these issues.
    Also, as Kathy mentioned, the worth wile person who will come into your life will not care that you have an illness, will not care how your body responds to that illness or its medications. My daughter, like you, struggled with the puffy face, the weight loss, the aches and pains. While in the midst of this struggle, when she thought that she was unlovable, she met her husband - to -be and he loved her with every inch of his being. She was not looking for him and had convinced herself that no one wanted a "Puffy-faced, pot marked, skinny, sick person" (does that sound familiar). She was, thankfully, so very wrong.
    Do not write yourself off, do not put yourself down, know that there is someone who is looking for you - not what you look like or how you feel- but WHO YOU ARE!!
    Who you are is a valuable person. We can see the wonderful you value through your words and we value that most important part of you. You should value it also. Instead of looking at what you cannot offer, what you cannot have..take pride in what you can offer, what you do have and know that you are worthy of everything good.
    We are here for you. You are never alone when you are here with us.

    Peace and Blessings
    Look For The Good and Praise It!

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