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Thread: I'm sick of this stupid flare!!

  1. #1
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    Default I'm sick of this stupid flare!!

    HI everyone! Basically I'm 24 and I feel like I'm 80. I'm on Prednisone and Plaquenil but I have been in a terrible flare since I had knee surgery a month ago. Now my kidney function's back down to 50% w/extreme amounts of protein and I'm at my wits end on how to deal with all this. My D-dimer test is back up to 8,000 and I'm having trouble clotting again-it had gotten down to at least 4,000 which was good because it had been greater than 10,000 (the computer only reads to 10,000). It has been a difficult few months since diagnosis even though I had been sick for a year before that. I had to drop out of my Doctorate program and move back in with my parents. I can't drive because that uses up what little energy I have. I know this is a little bit like a rant on my part but sometimes I just feel like I need to scream out! I had 2 semi-good months (the best i had in over a year) before the knee surgery so basically i'm back to square one now. I have been getting regular IVIG treatments for the last 5 months that had been helping. So Tuesday I'm starting at home infusions of Vivaglobin once a week that they are hoping will help with everything. I just feel soooo discouraged and I keep wondering when is the next good day going to come? Not to mention I have another chronic illness I have been dealing with my entire life-so life has always been a struggle but this past year I have been in and out of the hospital 8 times. I nearly died in February during my 2 week hospital stay. At this point I don't know what to do next! I just miss my friends and having a life so bad! That doesn't mean that I just sit around at home-I do go out but I can't ever make it for too long. They don't really understand that I can't will myself to feel better and have more energy--but wouldn't it be great if we all could! I apologize for this being so long and I appreciate anything y'all have to offer!

    Brandie
    "Success is not measured by what a man accomplishes, but by the courage with which he has maintained the struggle against overwhelming odds." -- Charles Lindbergh

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    Default BRANDIE - I HOPE THINGS GET BETTER FOR YOU SOON

    I DID IVIG ALONG WITH CELLCEPT AND IT STABILIZED ME FOR A LONG TIME BEFORE IT FINALLY STOPPED WORKING. I CAN'T IMAGINE GOING THROUGH DOCTORAL SCHOOL WITH THIS DISEASE - GRAD SCHOOL WAS BAD ENOUGH. I WAS SET TO ENROLL IN LAW SCHOOL, BUT DECIDED I JUST COULDN'T HANDLE THE STRESS.

    HAS YOUR DOCTOR EVER TALKED TO YOU ABOUT CYTOXAN FOR YOUR KIDNEY INVOLVEMENT? THE SIDE EFFECTS AREN'T GREAT BUT IT IMPROVED MY KIDNEY FUNCTION TO THE POINT I WAS ABLE TO STOP DIALYSIS.

    YOU'LL FIND THIS FORUM IS A GREAT PLACE TO VENT!

  3. #3
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    Default

    Welcome to our family. I'm glad you decided to join us. I've felt more at ease ever since I met this friendly group. I've only been diagnosed since March. It was very scary for me to cope with this new change in my lifestyle. All the changes were so drastic and so fast. I'm still learning and understanding the illness, but each time I read everyone's posts, I learn more about it. The unknown makes me nervous, but, everyone has been so understanding, sharing, and knowledgable. So remember that you're not alone and we'll help you through this. I feel the same way... I'm 30 trapped in a 80 year old body. Good days are hard to find, but, when one comes around, I try to enjoy every moment of it. :angel: Keep smiling.

    I've learned that life sometimes hands you situations when all you can do is put one foot in front of the other and live moment to moment. [/b]
    "I've learned that when bad times come, you can let them make you bitter or use them to make you better."

  4. #4
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    Default Raving Rants Make Us Feel Better !!!

    Hey Brandie,

    You initiated yourself quite well into this family, I promise you that you can tune in and on any given day you will read a good rant or two !! It's okay, it's expected when you're frustrated and feelin' blue. But don't worry sister, we're all here for you!! You will find the greatest support on earth, right here.....in this group!!

    I know the frustration that you feel, when you describe about friends not understanding why you can't "WILL" yourself to get better; my little' ole philosophy (by learning) is: perhaps there is a supreme being with a GREATER WILL at work in my life right now; (and all the sisters, say AMEN)..... smile.

    Stress and frustration are not good neighbors when you're living with lupus!! Lupus is alot like a family, you don't always want to be in the same house; but what are you gonna do? Find your peace, in whatever form it takes!!! Reading, drawing, music, any kind of hobby that you can lose yourself in....and RELAX. Easier said than done, I know.

    So kick off your shoes sister, we're all in this together! You'll find the greatest people on earth hang out here!! And just think, you won't get worn out, unless you type 5,000 words a minute (smile); you don't have to worry about being in the sun too long; and best of all.....we love you just the way you are!!

    Remember my friend, your doctorate was a dream....and who knows what the future holds for you. I say this to you, dare to dream again!! I loved the Charles Lindbergh saying you chose for your posts. It's not about the altitude anymore, soaring doesn't have to be about how high you soar; but I believe how long your heart can soar! You have found a great place to find comfort, encouragement; and a good healthy dose of WE UNDERSTAND !!

    Welcome our new friend!!
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

  5. #5
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    Default

    We all are old before our time Brandie. We with serious health issues feel this most acutely.

    In my times of weakness there are many methods I have taken to ease that feeling of isolation. Instead of going to your friends have your friends come to you. Feeling like a shut in sucks but companionship really eases the loneliness.

    I have struggled with this myself. Once or twice a week I would stay up til 4 am with my friends and their house playing Dnd with my boyfriend and another friend. Most of them work overnight shifts so we play those random nights of the week when they have a day off. None of them wake before 4pm. But with my energy dwindlin I've found I cannot stay up too late (despite my insomnia). I start to hurt really bad and pass out.

    This does not happen at my home. I think this is because I am most comfortable there and my mom is near to comfort me. Its so much easier to relax.

    You should have your friends bring board games and movies and home picnics. Life doesn't have to end with tiredness. When you can't go out and have a life bring life to you.

    Read this, I found it on another post on this site. It really made me understand how people viewed me and how I was failing to live healthily.

    http://www.butyoudontlooksick.com/20...heory.php#more

    I tried to press myself reassuring that I was still capable of doing the things I'd always done. Instead I was running myself ragged. I was exacerbating my condition.

    I've heard that Cytoxin can have miraculous results in patients with lupus nephritis. However, you should research it and ask your doctor about it. It is mild chemo therapy through an IV instead of radiation and if you have any desire to have children you might consider against it. However, if your
    health is declining, your life is most important. An alternate, just as effective and less invasive medication is micofenalate (Cellcept). I take cell cept and it has done wonders for me. According to my nephrologist (and I'm very lucky because in my area there is not just one but 5 nephrologists in the same office), Cellcept has seen nearly the same success rate as Cytoxin with alot less risks. She recommended the Cellcept because at the time I was 21 years old (I am now a month from 23). She said she preferred to place patients on cytoxin when they were out of the childbearing age or in very serious cases. Ask your specialist about these treatments. Also if you do not wish to have children the Cytoxin is a very viable treatment.

    Venting is part of the healing process. If you do not share your pain it builds up until it explodes. This can manifest in various ways, stress, depression, physical pain. Or you might accidently take it out on those around you. Those you love and would never hurt if you lashed out in pain. Your pain and illness may make you feel helpless but that is the time to reach out and take our hand. We will hold you.

    Lean on me when you're not strong, I'll be your friend, I'll help you carry on, for it won't be long, til I'm gonna need somebody to lean on.

    Hugs and hang in there kitty.
    If life makes you a vampire, try sunblock.

    Of all the things I miss in life I miss my mind the most.

    If you happen to find my marbles please send them back express mail!

  6. #6
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    Default SPOONS

    Silfana, I want you to know that this post is the best post I have read. I appreciate the article on "spoons." I never knew the meaning or the importantce of spoons. I was diagnosed with Lupus in January 2006. I feel the spoon issue myself. I don't have the energy like I use to. I have to plan life's events and get ready to rest before any of my events, appts or etc... I also walk with a cane. I push myself to walk with a can because I do not want to lose my independance. Now, when I go to butyoudontlooksick.com I would appreciate all those spoons people give me. :lol:

  7. #7
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    Default

    Brandie,

    Don't feel too bad about moving back in with your parents. I am 44 and had to do the same thing. (I think the need occurred to me when my mother had to dress me for a doctor's appointment. I was 42 at the time!)

    Fortunately, we were able to build a "Lupus Friendly" house for me. Two stairs, walk in shower with built in bench, and wide doorways in case of the need for a wheelchair. I am so thankful to have them there to help me. I worry about what I would/will do if they weren't there. But it is hard to accept sometimes.

    Being older, I realize I have older and wiser friends that understand that I cannot do everything like I use to. I have always said that the one "good" thing (if there can be one!) about getting Lupus was that I found out who my true friends are. They took the time to learn about Lupus and how they can help me. They have increased their patience with me and even spoil me sometimes.

    When I have my good days, I try to return that love to them. If I can't, they understand.

    My wish for you is a speedy end to the flare and the blessing of having good friends.

    PS:
    Silfana: I have used the spoon theory many times to explain all of this to people.
    LupieGirl

    What lies behind us and what lies before us are tiny matters compared to what lies within us.
    Emerson

  8. #8
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    Default I can relate

    Brandie,
    I can completely relate. In fact, you said a lot of the things I came to rant here about! I am 27 - diagnosed for over 2 years - and feel like I am doomed to be sick for the rest of my life. (My full story is posted in the intro section.) I had to quit my job, give up my dream, move back home, and end my relationship of 6 years (well, he did actually - he decided his career came first). Plus I was hospitalized 5 times in the 1st year. Though I managed to stay out of the hospital in 2006 (basically because I'd rather die than go back there), I still feel awful. December was the worst. I spent most of the month in bed and New Year's eve throwing up.

    So my question is - what do I do with myself???? I feel like I can't plan anything. I worked hard my entire life to succeed. I'd always dreamed of having a job I loved, a husband I adored, and children of my very own. Now all my friends are getting married and having children, and I don't know if I'll ever have any of that. It makes me wonder - why did I bother working so hard to graduate from college with honors when it has led to this? I barely leave the house. What kind of legacy is that?

    Does anyone have some advice? I'd love to hear from people around my age who are dealing with the same issues. Help me find some purpose in life!
    Thanks,
    Kate

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    It's so great that we all can have each other to lean on.

    When I first was sick and had to quit work and rely on my honey for everything, I thought all the things I dreamed about were lost forever. I think what Lupus has taught me is that dreams can change. I actually like the person I have learned to become since Lupus even better. Sure, my plans and dreams have changed, but I'm really excited about my life and I believe good things will happen for me, even if they aren't what I had originally expected.

    I've taught myself to knit and I really love making homemade gifts for friends. I've learned to cook (and made my dad proud)! I've really gotten into yoga, and didn't know I could find this much internal peace. I'm a great dog mom. I'm a wonderful employee, even though I only work part-time and I stick to it (not working more than I should). I know how to take care of my body. I've learned to value friends and family more than I ever thought I would. I've nurtured relationships and become a person I'm really proud of.

    I wish you the same feeling - of acceptance and finding your strengths...maybe even some you didn't know you had!

    Be Well!
    Missy

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