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Silentscream
02-28-2009, 07:23 PM
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.

rob
02-28-2009, 08:21 PM
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

sick n tired
02-28-2009, 09:35 PM
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.

BonusMom
02-28-2009, 09:53 PM
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!

Angel Oliver
03-01-2009, 08:46 AM
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

mountaindreamer
03-01-2009, 12:48 PM
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.

Silentscream
03-01-2009, 01:29 PM
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...

KATROACH1972
03-01-2009, 03:17 PM
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.

BonusMom
03-01-2009, 06:23 PM
How old is your daughter?

lilmisssunshine
03-01-2009, 06:35 PM
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!!!!

Rastagirl
03-01-2009, 06:51 PM
Just wanted to welcome you to the forum....glad you decided to join us.

My heart is aching for you...and for your daughter. I've had Lupus for 27 years now....was diagnosed when I was 18, right out of high school. I so understand your suffering for your daughter. You're deep sadness for her losing her dreams. I went through all of that. I watched my parents go through exactly what you are feeling. I felt like my life I had worked so hard for....planned for...was stolen from me. I felt cheated. It was so hard to watch everyone else my age going on with their lives...going to the colleges they had chosen, making something of themselves...fulfilling their dreams. Yes, it hurts deeply. I didn't really admit it at first, just held it in and kept it to myself. It definitely took me some time to work through my anger and frustration and to keep on living, in spite of the Lupus. But I want to share with you that the #1 thing that kept me going and not giving up...kept me sane...ended up being my rock solid foundation...was my family...my Dad...my Mom...and my Brother and Sister. I could not have made it through my most difficult days if not for each of them. It is huge to have parents that love you deeply and would do anything for you...even trade places. You know they can't do that, but just knowing that they would, means the world.

I wanted to share a very important memory from the first few weeks after my diagnosis. It involves my Dad. I will never forget it. I was suffering in horrible pain one night...joint pains all over my body and the worst were in my feet. My ankles and toes were so incredibly painful that even the light weight of a sheet on them, was too much. I was angry, confused, deeply sad, and in more pain than I had ever been in. My family was in bed already asleep as I lay awake alone. I was crying silently...tears soaking my pillow and wanted to give up. My bedroom door opened very quietly and my Dad came to my side. He sat down on my bed, lifted me onto his lap, just like when I was a little girl, and he held me and let me cry onto his shoulder. We didn't say anything...he just held me and hugged me gently. We sat like that for almost an hour. When he layed me down and covered me carefully, he leaned down and told me how much of a torture it was to have to see me like this. How helpless he felt. He told me if he could trade places with me...he would do it in a heartbeat. He told me that he didn't understand why this was happening to me....that I didn't deserve it, and that no matter what I went through he would ALWAYS be there for me. And he would never stop hoping that things would get better for me and a cure would be found. I will treasure his words forever. He said exactly what I needed to hear right then. He helped give me the strength to fight and never give up and let Lupus win.

I wanted to give you some hope that life can still be very good for your daughter. I struggled a lot in the first few years trying to get things under control with my meds and symptoms, but things did quiet down and I've now been in remission for more than 15 years. I am blessed with a very loving, supportive husband of 25 years and even more blessed to be a Mom to a 16 year old Son and 12 year old Daughter. They are my joy in life!

My heart completely understands your agony in seeing you daughter suffering. To see my children in pain is heartwrenching. I am really sorry for your struggle. But I want you to know that you, as a Dad, are one of the most important people for your daughter to count on. She will get her strength from you, and for her to know that you love and support her no matter what happens, is a very valuable gift.

You and your daughter will be in my prayers. And please invite your daughter to join us if she'd like, so she can ask questions and find others that undertand and care.

Fondly,

Lori :)

Silentscream
03-01-2009, 09:44 PM
Thank you everyone for opening up and sharing your life and thoughts.
Lori, your story of your Father and how he held you was so touching and I feel for how much pain you both felt.
I wish i could do the same but my Daughter is still in New york at school. For how long I do not know. I visit often but I am not a part of her everyday life. I worry she does not express what she feels. She keeps it inside.
How wonderful Lori that you have had 15 years. I wish you so much happiness and thank you for the post.




Just wanted to welcome you to the forum....glad you decided to join us.

My heart is aching for you...and for your daughter. I've had Lupus for 27 years now....was diagnosed when I was 18, right out of high school. I so understand your suffering for your daughter. You're deep sadness for her losing her dreams. I went through all of that. I watched my parents go through exactly what you are feeling. I felt like my life I had worked so hard for....planned for...was stolen from me. I felt cheated. It was so hard to watch everyone else my age going on with their lives...going to the colleges they had chosen, making something of themselves...fulfilling their dreams. Yes, it hurts deeply. I didn't really admit it at first, just held it in and kept it to myself. It definitely took me some time to work through my anger and frustration and to keep on living, in spite of the Lupus. But I want to share with you that the #1 thing that kept me going and not giving up...kept me sane...ended up being my rock solid foundation...was my family...my Dad...my Mom...and my Brother and Sister. I could not have made it through my most difficult days if not for each of them. It is huge to have parents that love you deeply and would do anything for you...even trade places. You know they can't do that, but just knowing that they would, means the world.

I wanted to share a very important memory from the first few weeks after my diagnosis. It involves my Dad. I will never forget it. I was suffering in horrible pain one night...joint pains all over my body and the worst were in my feet. My ankles and toes were so incredibly painful that even the light weight of a sheet on them, was too much. I was angry, confused, deeply sad, and in more pain than I had ever been in. My family was in bed already asleep as I lay awake alone. I was crying silently...tears soaking my pillow and wanted to give up. My bedroom door opened very quietly and my Dad came to my side. He sat down on my bed, lifted me onto his lap, just like when I was a little girl, and he held me and let me cry onto his shoulder. We didn't say anything...he just held me and hugged me gently. We sat like that for almost an hour. When he layed me down and covered me carefully, he leaned down and told me how much of a torture it was to have to see me like this. How helpless he felt. He told me if he could trade places with me...he would do it in a heartbeat. He told me that he didn't understand why this was happening to me....that I didn't deserve it, and that no matter what I went through he would ALWAYS be there for me. And he would never stop hoping that things would get better for me and a cure would be found. I will treasure his words forever. He said exactly what I needed to hear right then. He helped give me the strength to fight and never give up and let Lupus win.

I wanted to give you some hope that life can still be very good for your daughter. I struggled a lot in the first few years trying to get things under control with my meds and symptoms, but things did quiet down and I've now been in remission for more than 15 years. I am blessed with a very loving, supportive husband of 25 years and even more blessed to be a Mom to a 16 year old Son and 12 year old Daughter. They are my joy in life!

My heart completely understands your agony in seeing you daughter suffering. To see my children in pain is heartwrenching. I am really sorry for your struggle. But I want you to know that you, as a Dad, are one of the most important people for your daughter to count on. She will get her strength from you, and for her to know that you love and support her no matter what happens, is a very valuable gift.

You and your daughter will be in my prayers. And please invite your daughter to join us if she'd like, so she can ask questions and find others that undertand and care.

Fondly,

Lori :)

Silentscream
03-01-2009, 09:45 PM
My Daughter is 21 and still in a dorm in college so very hard to eat right, get sleep and no stress.
Thank you for the post.


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!!!!