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Thread: any one have this problem?

  1. #11
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    Default I experience the same too!

    Hey living in my Day dream! Well, I have the same problem too. I was diagnosed with lupus when I was 13 and at that time I was in secondary school. I am 16 now and in my final year of my secondary school and I have been living with lupus for 3 years. My parents did the same thing too. They often say that my medicines cost a lot especially cellcept and cellcept costs $2.00 PER tablet. Having lupus have taught me to be really patient and to let go of things that I cannot have. Sometimes, I feel sorry for my parents who have to even work on weekends and sell the house to move into a smaller apartment. My parents cannot buy things that they want because the money is spent on me. As I am the only child, sometimes I wonder why does it have to happen to me. Anyway, I know I'm ranting here but I just hope that I can stop taking cellcept next year as what my doctor had predicted. And now, instead of taking 6 pills per day, im taking 3 cellcept pills per day because I want to help my parents cut cost. Unlike other people who don't take meds because they don't want to, I do that because of financial reasons. I hope that everyone who has lupus will be able to lead a normal life. Fight on!

  2. #12
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    Default

    Thanks for telling me that. It's good to know that I'm not the only one. I hope you get off your meds soon. Thanks again.

  3. #13
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    Default

    Hey,
    I am so sorry that your family does that. But everyone has their own ways of dealing...
    I don't know that to tell you, except that my dad has done the same thing with my hospital bills.
    Never EVER feel bad about having lupus...
    you just can't control it.

    -hil

  4. #14
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    Unhappy :(

    HI!!
    well iam a teen and i just got diagnosed with lupus and i know how you feel. Since my dad is not part of my life since i was 5 years old my mom decided it was time to get him involved. So she told him about my lupus and that i had just had a kidney biopsy and that we needed his help a lot. My dad agreed but when he spend money he started complaining about the money it was costing him. i felt really really bad and angry at the same time but i figure he hasnt done ANYTHING for me all this time and i need those meds. hopefully this helps you!!!

  5. #15
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    Default

    Hi DayDreams... I totally understand. My illness started at the age of 13..I am now 19. I have been on so many different meds and had soo many test that cost my parents an insane amount of money that I too feel bad. But it isn't right for your parents to take it out on you..you have enough to worry about. My parents have also made comments about us not having money and say it has to do with my illness but I make sure I tell them how I feel because I do feel bad that they don't have money because of ME.

    I too am also on cellcept and for a retail price of 1500 a month sometimes I feel like not taking it and selling it on the black market to make some of my parents money back..but obviously thats silly.

    Don't let your parents put you down! Tell them how you feel and just know that money isn't everything...good luck & stay positive!

  6. #16
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    Default

    Sorry to hear your having to endure being teased...THAT SUCKS! I don't have that problem as I am an adult and pay for my own meds/doctor visits...but I have had to lean on my mom/grandmother to help me out as the filling the prescriptions every other week/co-pay, lab fees do add up. I had to take a $20K pay cut with the job I have now so needless to say money is tight even for an adult with Lupus. I would tell your family again how it makes you feel and express to them that Lupus isn't anything you asked for or wanted but is what you have and have to deal with and a little compassion would be appreciated. You might want to tell them that the drugs make you more sensitive than you were prior to having Lupus/being sick as well. Sorry you have to endure this but I hope by talking to them they will back off making statements like that to you!

  7. #17
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    Default

    I know this thread is over a year old but I wanted to reply.

    I am 22 now but when I was a teen, I totally know how you feel. My parents always blamed things on me and said that every time I got sick that I was faking it and it was just a waste of their money. My symptoms started at the age of 12 but my mom wouldn't believe me and wouldn't take me to the doctor saying I was faking it. They still don't know that I was dignosed with SLE because they'd tell me it was all in my head. When I had to have my gallbladder out, they tried to tell me that there was no reason it needed to come out. Anyway, it will get better and I hope you can deal with it in your own way. It's frustrating trying to grow up and deal with their crap. I moved out the day I turned 18. I'm not condoning this, but it truly helped me. I lived out of my car for a short period of time and it was hard, but psychologically it made me a better person. Anyway, sorry for rambling. It will get better.
    I'd rather be hated for who I am, than loved for someone I'm not.

  8. #18
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    I am a parent and i never discuss money matters with my children. you can't be blamed for having and illness which you will have the rest of your life. you need to be very open when talking to them and let them know how feel. you should not have to worry about money until its time you need to enjoy your life the best you can and be young like you are is the best time of your life so don't frett, tell them at the dinner table when you have their attention.l good luck sorry your going thru this.

  9. #19
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    Default

    I'm a teen...and yeah.
    My mum doesn't rub it in my face but I see it...and it bothers me. She stayed up late last night going through all my bills. Everyday I get the mail and we have like three bills a day from some sort of Dr. visit, blood work, hospital stay or X-Ray. That's not counting the like eight medications I'm on and the five medications Drs started me on and decided to discontinue within the next three days. They seem to forget that we have to pay for those pills...On top of that, my mum cut her hours from work because she couldn't take me to my appointments with her schedule...
    "The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." -MLK, Jr.

  10. #20
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    Default

    I want to thank everyone again for posting to this. I wasn't able to get on for a while now. I don't know why but suddenly I'm able to get on again. I don't know which messages I read before and which ones I didn't. I would like everyone to know that my parents no longer joke around like that. I probably posted this when I was either 15 or 16. I am now 18. We've learned how to deal with things better now.

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