any one have this problem?

livingINmyDayDreams · Tadpole Joined: 25 Jan 2008 Posts: 24

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. Crying or Very sad

Saysusie · Posted: Sat Mar 01, 2008 8:40 am Post subject:

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
_________________
Look For The Good and Praise It!

rob · Posted: Sat Mar 01, 2008 10:58 am Post subject:

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 · Newbie Alert Joined: 13 Mar 2008 Posts: 2

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 · Posted: Mon Mar 24, 2008 5:06 pm Post subject:

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! Laughing

sick n tired · Posted: Mon Mar 24, 2008 7:56 pm Post subject:

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
_________________
I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

Darkhime · Not So Newbie Joined: 05 Apr 2008 Posts: 9

beezysbaby · Posted: Thu Jun 05, 2008 8:51 pm Post subject: kinda new

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 · Tadpole Joined: 25 Jan 2008 Posts: 24

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 · Posted: Mon Jun 09, 2008 11:00 am Post subject:

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
_________________
Look For The Good and Praise It!

Rayhanah · Tadpole Joined: 23 Dec 2007 Posts: 19 Location: Singapore

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 · Tadpole Joined: 25 Jan 2008 Posts: 24

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 · Sea Monkey Joined: 30 Jun 2008 Posts: 11

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