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livingINmyDayDreams
01-31-2008, 07:07 PM
I hope its ok that I'm starting a new topic...
I really wanted to know if this happens to anyone else...and seeing as it would really only apply to teens, I didn't want to post it in an adult forum.
Ok so my parents are constently (sorry if thats spelled wrong) telling me that my meds and stuff cost a lot. They usually mean it as a joke, but I don't find it funny. I think its mean. I'm currently on Cellcept, which costs a lot. So yeah, then with all the doctors visits and blood work...
It really gets on my nerves...I've told them to stop because it bugs me and for a long time they did. But recently they've started again...basically I guess I just wanted to vent. I also really want to know if others have this problem. Oh yeah...and tonight...the reason I thought about putting this up, my sister was seroius about it. She was telling my parents we can't afford a dog (we were voting on wether to get a dog or not but thats not important) because my meds and stuff cost too much. Its always the first thing brought up and that bugs me. I hate costing my family money. I must sound like I complain a lot, sorry. Please let me know if you have this problem too, thanks. :cry:

Saysusie
03-01-2008, 09:40 AM
I'm sorry that no teens responded to your question. I kept waiting and waiting for someone to respond and, since that has not happened, I thought I'd respond.

As a parent, I don't understand why your parents would continue to make an issue about the costs of your medications. Would they prefer that you go into a flare that could potentially be fatal? Ask them, if they do not want to pay for your meds, what is it that they want you to do? Do they want you to sacrifice your health and possibly your life by not taking meds in order to save them money?
They must understand that you DID NOT ask for this illness, you would be more than willing to not have this disease and not have to take medications. It is not like you conspired one day and said; "Hmm, I think I'll get a lifelong disease that will have to have expensive medications to make it manageable...Yea, I think I'll do that just so that I can make my Mom and Dad pay lots of money for my health care and medication!" The fact is, YOU have the disease that no one wants to get, you have to live with its symptoms and flare-ups. They should be supporting you and doing everything that they can to ensure that this disease does not become life threatening to you.
Perhaps you can do some research in order to find organizations that will help pay for medications. Talk to your doctors about this issue and also ask them if they know of any organizations that help with the cost of medication.
It is good that you came to us to vent, I am so sorry that it took so long for you to get an answer. But, please know that we are always here for you and I truly hope that your parents hear what you are saying to them and that they become more caring and more supportive.

Peace and Blessings
Saysusie

rob
03-01-2008, 11:58 AM
I'm not a teen either, but I wanted to tell you that I used to think I was a burden to the people around me. It took my family members time to understand what Lupus is really all about. They knew what the textbook symptoms and basics were, but they had no idea what it was really like to live with Lupus. One thing that helped, was to have a couple of family members go to my rheumotologist appointments with me. To have the Dr. talk to them about the needs of people like you and I. To have a doctor, an authority figure, explain to them how serious this disease is helped open their eyes to the reality of it. A common theme among people with Lupus is the fact that our self esteem, our self confidence, and our feelings of self-worth are very fragile at times. So fragile that even little remarks, like the remarks regarding the cost of your meds, can destroy what little self esteem we have left. Your health is not a commodity that people can assign a dollar value to. You, your health, and your life, are priceless, and irreplaceable. Talk to your family, express your concern, and the hurt that comes from their comments. Have your Dr. or even a councelor back you up, and be an advocate for you. If you want to talk more, and vent, don't hesitate to come here and talk. Hope this helps.

Rob

sam9109
03-13-2008, 05:24 AM
hey, i know what you mean. my medicine costs alot too. i have cellcept as well. my parents joke around about it too. it does get annoying. but its not your fault. you didnt choose to get sick and have a bunch of medications. do you have an AIM screen name? and i know you posted this a while ago, but i just joined. haha

Pearl
03-24-2008, 06:06 PM
Well, I'm not a teen, but a I am parent of teens - does that qualify me to respond?

Bless your sweet heart. As if having this illness isn't difficult enough....Sometimes we parents don't handle things perfectly when we are powerless to fix something. Sometimes, humor hides fear. Perhaps you can sit your parents down, tell them you love them, and tell them how much you appreciate what they do for you. THEN, in no uncertain terms, explain to them how hurtful it is when they comment about the cost of your medicine. Saysusie is right...you did not ask for this.

Definitely talk to your doctor about prescription medicine programs. See if there is a research hospital or facility in your area that offers prescription assistance programs. Check with Wal-Mart. Check the Lupus Foundation of America website. There might be a link there for something. Better yet, recommend to your parents that they check these things out. Or even better still - do this on your own and the next time they say something, just hand them the information and smile. They'll get the point.

Hang in there. I have four teenagers. They have all survived, despite having me as a parent! :lol:

sick n tired
03-24-2008, 08:56 PM
Hey honey,

I, also, am a parent of teens...Sometimes we might say something and not realize how it makes our kids feel...Perhaps you need to sit down and tell them how it makes you feel...I also feel like a burden and feel like I need to apologize for the cost of money or time.

Like Saysusie and pearl have said...you did not cause this, nothing you did made this happen...so there is nothing that should cause you to feel guilty. Talk to your parents and have them talk to the other siblings. I like the idea that Rob said. Perhaps you should talk to the doctor or nurse and have them tell your parents what it is doing to you and that their "jokes" are not helping.

I have to weigh everything that I say, because sometimes it can be misconstrued to mean something I didn't mean, but that is how it has been taken...it is a good chance your parents don't realize just how this makes you feel. I know you have said something in the past, but they might have forgotten.

Take care, honey,

Karen

Darkhime
04-06-2008, 08:07 AM
I hope its ok that I'm starting a new topic...
I really wanted to know if this happens to anyone else...and seeing as it would really only apply to teens, I didn't want to post it in an adult forum.
Ok so my parents are constently (sorry if thats spelled wrong) telling me that my meds and stuff cost a lot. They usually mean it as a joke, but I don't find it funny. I think its mean. I'm currently on Cellcept, which costs a lot. So yeah, then with all the doctors visits and blood work...
It really gets on my nerves...I've told them to stop because it bugs me and for a long time they did. But recently they've started again...basically I guess I just wanted to vent. I also really want to know if others have this problem. Oh yeah...and tonight...the reason I thought about putting this up, my sister was seroius about it. She was telling my parents we can't afford a dog (we were voting on wether to get a dog or not but thats not important) because my meds and stuff cost too much. Its always the first thing brought up and that bugs me. I hate costing my family money. I must sound like I complain a lot, sorry. Please let me know if you have this problem too, thanks. :cry:
I am afraid to say I dont have that type of problem but I will try to help. You are right, it isn't funny. Do not feel bad, it isn't your fault you have this illness. If your parents really don't want to pay for your meds, turn to the government. If the government wont help my specialist told me to get the meds for Canada, it is much cheaper there.
Think positive and remember it is your parents responsibility to take care of you.

beezysbaby
06-05-2008, 09:51 PM
I understand what you're going through... and like someone said ... we never asked for this... and im sure if we could decide when we could get flares and have to get all these stupid meds we'd 99.9999999999% of the time decide not to be sick... My mom kicked me out to be with a man so i've been having to take care of myself since i was 16 Now that i dont have medicaid anymore i dont know what to do... i'm really giving thought into giving up because i just dont know how much more of this i can take.

livingINmyDayDreams
06-08-2008, 05:09 PM
I haven't been on for a while and I just noticed that people replied to this. I thank all of you for commenting. It made me feel a lot better. I started to tear up at a few because you're all so willing to help. Thanks. They haven't said anything about it in a while so I'm hoping they keep it that way. If they do say something again I'll keep your suggestions in mind. Thanks again!

Saysusie
06-09-2008, 12:00 PM
You are more than welcome. And, remember, we are always here if you need us. You might even want to invite your parents to come here and read some of our member's posts so that they can get a better understanding of this disease and how if affects all of us, including you.
You are not alone!

Peace and Blessings
Saysusie

Rayhanah
06-28-2008, 05:07 AM
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!

livingINmyDayDreams
06-28-2008, 07:47 AM
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.

Tohaveornot
07-17-2008, 10:22 AM
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

stephanie2008
04-29-2009, 08:19 AM
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:hissyfit: 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!!!

K.Grams
05-29-2009, 03:55 PM
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!

dsunshine
05-29-2009, 05:27 PM
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!

MicRoMediC
06-01-2009, 09:41 AM
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.

gina
06-01-2009, 11:04 AM
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.

ElyMiller000
08-31-2009, 03:04 PM
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...

livingINmyDayDreams
12-19-2010, 06:14 PM
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.