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Thread: Helpless and in pain

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    Default Helpless and in pain

    First, Thank you for the chance to speak in your forum. This will be the first time I speak to anyone about what I am feeling.
    Let me say I do not have Lupus. Although I would gladly take it if I could from my Daughter who was just diagnosed.
    Like most I guess I have become a quick study on lupus and I am so saddened by what I have learned.
    The degree of despair and suffering is just overwhelming. I thought Cancer was bad or any other disease along those lines but damn this lupus. Cancer most times you win or lose. There is Hope but this Lupus comes and destroys, takes away dreams, youth, future plans and then goes away just long enough to start picking yourself up again and then it takes it all away.
    To be a Father and have to watch what it is doing to my daughter is more pain then I ever thought I would know.
    I am doing all I can and put forth a positive appearance. I seek out the best Dr's and cover the costs but inside this diagnosis has torn me apart. I am so helpless.
    50 years of no new drugs? Why? So much suffering. No-sun, no meat, oh meat is ok, oh no be a vegan, vitamin D, no fish oil, exercise, no stress oh pray a lot......
    I am sorry I seem so negative. I just see what it is doing to the dreams of my girl, in her prime, who may have to give up her goals. I read the forums, the suffering and pain without end. I search the web for hope and see nothing. Just meds that cause as much problems as they cure.
    My pain is nothing to hers but how does a father go on doing what he enjoys in life without feeling selfish. How do I go on and lets say go diving when my daughter cannot get out of bed that day.
    Sorry I have no ending for the post, just to say lupus is so unknown and oh the silent desperation of so many.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Silentscream,

    Welcome to our group. I'm Rob. I'm 41 and was diagnosed with SLE five years ago. My mother, who is now 72, was diagnosed with SLE around 1990. To have this disease is very, very hard to deal with, but to have a child with Lupus can be unbearable. Your description of what lupus does to a person's life is very profound, and I've never really thought of it from that point of view before. It does indeed take ones dreams, aspirations, and plans for the future away. You make new plans, have new goals, but you only get a taste of it before the rug is pulled out from under you again. It's a relentless enemy.

    I had finally achieved my dreams on so many fronts only to have everything taken away. Career, wife to be, friends, all gone seemingly overnight. There is indeed depair and silent desperation. But, there are also many reasons to have hope. In my case, yes, I'm on full disability and probably never work again. But not everyone is like that. We have members here who are still able to work and pursue many of their dreams. And we have people here who have lived with Lupus for a very long time. It's by no means easy, but it can be done.

    As far as meds go, there are a few that are well tolerated, and have minimal side effects in most people. The most common med is Plaquenil. I've been on it off and on for about 4 years total. Many people respond well to it. There is a possibility of serious vision problems, but it's rare. I see an opthamologist regularly to monitor for possible damage to my eyesight.

    Lupus, is a serious disease that will turn a persons life upside down, but it is by no means always the end. It can be treated in many, and with lifestyle changes and adjustments people can still have fulfilling lives, just not in the way we had planned. Many people with Lupus have no support from family at all. The support and understanding you give your daughter is priceless. Just having one person in life who cares and tries their best to understand can make all the difference in the world.

    Once again, welcome to our group. Please make yourself at home.

    Rob

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    Hey Silent scream,

    I hear you...I am crying for you...this time last year as many of the members remember, I had an 18 year old who was seriously ill. I saw all her dreams fading. I took her myself to her university to drop all classes. She was so ill, we were told that she might not make it. Holding her in pain. Was terrible. On top of that, I have Lupus...it i was clear that she has something autoimmune, but what.
    Well she did recover and is doing ok now.I still find myself waiting for the other shoe to drop but she it moving on. She has had some recurring pain but nothing like the nightmare of last year.
    Perhaps your daughter will come out of this flare-up and go into remission for years. Some on here have done just that. It is great that she has such a loving father and I can assure you, it is a comfort.
    Being a parent is so hard and I personally believe that it is easier to be the person in pain than watch someone we love be in pain.
    Know this...I have you and your beautiful daughter in my prayers.
    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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    So sorry to hear of your daughter's recent diagnosis. As a parent, I would trade places in a heartbeat if any of my children was experiencing health issues. It tears my heart out to watch helplessly any time my kids suffer.

    As a grown woman who has little emotional support from my parents/spouse/brother, I can tell you that your doing research about Lupus, asking your daughter how she's feeling, sincerely being interested in her well-being and accompanying her to doctor's appointments (even if you remain in the waiting room) is priceless. She's lucky to have a dad who is obviously concerned about her

    Welcome to the forum!

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    Default hi

    Just to say....what a fantastic father you are. I am sorry to read about your daughters recent diagnosis, but keep reading on this site. There are many here who can give you some hope. I know its so scary now.....but we are all here for you and sending you gentle hugs.

    Love
    Angel.xxxxx

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    hi silentscreamer,

    I am so sorry to have to welcome you to the forum. I have grown children, and have had to battle cancer with one of them.....thank goodness we won. Yes, lupus is so different. Our dreams to fade, but as Rob said, we replace them with new ones that are within our reach. As sickntired said, many of us enjoy many years of remission. I went approximately 10 years with little trouble before mine raised its ugly head.

    I know how painful it is to be a parent who feels helpless. But, i assure you, your support, understanding, and advocacy, will help her cope with this reality. Good luck, and feel free to vent to any of at any time.
    Phyllis

    share a smile today

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    Thanks for the kind words everyone.
    I know I am handling this much worse then my daughter. She for now is just doing her thing and not letting her get her too down but I see the long term possibilities and the realities of this disease.
    It's not about me but the sadness and weight on me is overwhelming. I need for her sake to find a way to cope, to wrap my mind around this new problem. I need to find a way to still be of value to the rest of my family and enjoy life.
    With her sick I feel selfish to enjoy what she cannot. It is on my mind every second of everyday.
    maybe time...

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    I am Soo sorry. I can relate a little, I had sle a while and my older sister and 4 cousins, and four months ago my neice who is 21 was diagnosed. Its a horrible thing to deal with youself , but even worse to see loved ones have to fight it also. I'm not to good a writing, but just wanted to say I am sorry, and if you need a friend i'm here.

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    How old is your daughter?

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    hello and welcome!!! my daughter also has SLE. i know and feel your pain, desperation, frustration, fear, fatigue, anger, and sadness. there is hope, though!
    i also have lupus. there are days when i want nothing more than to pull the blankets over my head and forget it all. however, reality dictates that i "move it, move it" (as my daughter loves to sing! i am able to do most of what i want - this disease is not who i am. it's limitations may mean modifications to my day, but i refuse to let lupus win. and i refuse to let lupus have my daughter!
    there are several excellent threads here about the prevention and management of flares. learn them inside and out, forwards and backwards, right side up and upside down. this is key to longevity and an improved quality of life. protect you daughter from the sun. encourage her to get more than enough sleep. teach her to listen closely to her body. develop, and encourage her to develop, and excellent relationship with her physicians. provide her with nutritious meals and snacks. make the best choices you can possibly make at the given time. no one, including her, will find fault with you if future research amends current available data.
    how old is she? i feel fortunate that my little girl is 7; she is young enough to still value my opinions and requests information from me. i can manage her medications, take her to her appointments, ensure that her labs are done, sent, and reviewed properly. i think dealing with an adolescent would be more difficult. there's a fine line of developing independence that would be very difficult to walk. side effects from medications are likely much less desirable as body image becomes much more important.
    please, do not give up on her dreams. or your dreams for her. they may need to be re-evaluated, and even modified, but there is no need to give in to lupus!!!! we can win!!!!

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