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piglet
09-16-2011, 10:54 AM
My name is Shannon, Im a mom of a Lupie,she is 13 yrs old and I am trying to be active in finding out as much as I can about her disease.I hope by asking Questions to you, I can help her.She is a strong girl,but she ignores her disease to the point of arguements about taking her meds.I try to be understanding,and realize its a hard adjustment,but I feel lost.Any ideas about what to do?Healthy is all I want her to be, and yelling and screaming isn't going to help. We found out about her lupus over a year ago, I understand she is angry.Counsiling doesn't seem to be helping. Is it the age, or is it something else? We have no support groups for Lupus, let alone one for kids with cronic illnesses. Any advice will help,especially if any teens out there know what helped them.

ritzbit
09-16-2011, 11:11 AM
I was diagnosed when I was 16, but started feeling more sick around your daughters age. It was pretty devestating to feel like everything I'd wanted wasn't going to happen anymore. I was just starting to have an idea of what I wanted in life, and I felt like it was taken away. Im sure at any age its hard, but there so much going on between 12-18 that being told your really sick makes everything more difficult. For me it was always easier to pretend I wasn't really sick or think of my lupus as something outside of myself, not PART of me. Because of that thinking I still have a hard time with my pills sometimes. Im 18 and still get into fights with my mom about how often Im really taking my pills. I thought I knew what I was doing last time I secretly stopped taking my pills, and I ended up really sick and in and out of the hospital about 2 months later, missed about a month of school, and could barely walk. Even with all of that Im still not the best with my pills, but I remind myself that I dont want that happening again. Oh and if you asked my mom she would tell you I was a terror at that age, so Im sure age is a factor lol. My advice would be to tell her that sometimes when you go off your meds you think you're doing fine for awhile, but it ALWAYS catches up with you and you're much worse off then.

debbie-b
09-16-2011, 01:45 PM
I was 50, when I was diagnosed and let me tell you, it was very hard to get a diagnoses like this one and take all these meds. I really don't know, how teenagers or young mothers, deal with this.
We have a few teenagers on this forum, maybe your daughter could read some of their posts.
Make sure to tell her, taking her meds is important, plus she will start feeling better, once those meds kick in. It just takes a while for them to start working.

Debbie

piglet
09-16-2011, 01:50 PM
I was diagnosed when I was 16, but started feeling more sick around your daughters age. It was pretty devestating to feel like everything I'd wanted wasn't going to happen anymore. I was just starting to have an idea of what I wanted in life, and I felt like it was taken away. Im sure at any age its hard, but there so much going on between 12-18 that being told your really sick makes everything more difficult. For me it was always easier to pretend I wasn't really sick or think of my lupus as something outside of myself, not PART of me. Because of that thinking I still have a hard time with my pills sometimes. Im 18 and still get into fights with my mom about how often Im really taking my pills. I thought I knew what I was doing last time I secretly stopped taking my pills, and I ended up really sick and in and out of the hospital about 2 months later, missed about a month of school, and could barely walk. Even with all of that Im still not the best with my pills, but I remind myself that I dont want that happening again. Oh and if you asked my mom she would tell you I was a terror at that age, so Im sure age is a factor lol. My advice would be to tell her that sometimes when you go off your meds you think you're doing fine for awhile, but it ALWAYS catches up with you and you're much worse off then.


Thank you for your advice and sharing that with me,it helps to know someone out there feels the same way she does.She always tells me she just pretends she doesnt have it.And refuses to talk about it.I dont want to force it on her,but I am anxiosly waiting for her to need to talk.

tgal
09-16-2011, 02:46 PM
My name is Shannon, Im a mom of a Lupie,she is 13 yrs old and I am trying to be active in finding out as much as I can about her disease.I hope by asking Questions to you, I can help her.She is a strong girl,but she ignores her disease to the point of arguements about taking her meds.I try to be understanding,and realize its a hard adjustment,but I feel lost.Any ideas about what to do?Healthy is all I want her to be, and yelling and screaming isn't going to help. We found out about her lupus over a year ago, I understand she is angry.Counsiling doesn't seem to be helping. Is it the age, or is it something else? We have no support groups for Lupus, let alone one for kids with cronic illnesses. Any advice will help,especially if any teens out there know what helped them.


Hi Piglet and welcome to WHL. Your daughter is very lucky to have a mother that is taking so much interest in her disease.

I wish I could give you some magic trick that would make her understand how much she needs her meds. Sadly I can't. Even many adults fight with this issue. I firmly believe that coming to accept a chronic illness is much like dealing with the death of a loved one. In essence it is dealing with the death of your life as you have known it. There IS life with lupus but your life does change. Below I will list the stages of loss

What are the stages of the loss process?
Stage 1: Denial
Stage 2: Bargaining
Stage 3: Anger
Stage 4: Despair
Stage 5: Acceptance
Stages of Loss (http://www.livestrong.com/article/14684-stages-of-the-loss-process/) (read more here)

As you see denial is the first step. It is often times the hardest to overcome. "If I don't think about it then it didn't happen" could be translated to "if I don't take my meds then I am not really sick". The hard part about this is that when we don't take our meds we continue to get sicker. Without our meds Lupus can begin to affect our organs which can lead to much worse symptoms or, in the very worst cases, death. There are several on this site that have seen friends or even children die because of their need to not take meds. I promise I am not trying to scare you but I do want to make sure that you understand this and can pass it on.

With all of that said there is such promise about living a full life even with this disease. There are people here that have lived for decades (yes, multiple) with Lupus and have done so happily. Of course we all wish that we didn't have it and we may have had to make changes in our life plans but by changing the plans we get to experience things we may never have thought possible.

I think the biggest thing needed in order to get beyond the denial phase is to get to a place where we can begin looking at new, wonderful things that we can do with our lives. One of the other moderators here used to fly and hated having to give that up. You could talk to him about it but I know it was a dark time for him. He didn't give up though and made a few changes in his dreams and now enjoys drag racing (another kind of adrenaline rush).

there are tons of stories like that but his seems to make the most impact. It is a good example of life changing but not ending. Just do your best to make her understand that her life isn't over but it has a chance of being miserable without the meds. With the meds her whole life is in front of her just like it was before. My daughter has changed what she wanted out of life multiple times since she was 13 (she is 16 now). Basically taking meds allows her to be a normal teen and change the dreams not end them

steve.b
09-18-2011, 04:49 AM
hi piglet,
i am almost 50. i was diagnosed at 47, but have had symptoms for over 30 years.
i think everybody tries to deny serious health issues at first. this is normal.

i also have a 13 year old daughter, with minor health issues.
she likes to deny her issues too. she also will lie about her medication.

i am glad you are taking a supportive possitive role.
i look forward to meeting you on a cyber level.

welcome.

piglet
09-19-2011, 09:10 AM
You explained alot ...Thank you so much.I never thought about telling her it changes but does not end,I will have a talk with her using this as an example.

Gizmo
09-19-2011, 03:26 PM
Hi Piglet (love that name)! I have lupus, and have a 19 year old daughter whose health has gone downhill since she was about 13. She has undifferentiated connective tissue disease (an autoimmune disorder) among other things. Being a teenage is so hard, and then to be sick on top of it just stinks! Your daughter is at an age where all kids are testing their independence and trying to break away from their parents. Friends are super important, so keep an eye on who she is hanging out with. Maybe she will confide her feelings to them, or to another trusted adult. If you can find a counselor that she can talk to, that can be very helpful.

Unfortunately, you may just have to take a step back and let her make mistakes and find out things the hard way. Let her know that you are always there for her, and how much you love her. If she gets sick, take care of her, but don't hover. Be her advocate with the doctors. Bite your tongue when she does something that makes her lupus worse. You can't force her to accept her diagnosis, but you can offer her quiet support and unconditional love. To do that, you will have to take care of yourself and find your own support system for dealing with the stress and pain of having a child with lupus. It is SO hard to have a sick teenager, and it feels very lonely because you can't vent to friends and family without violating her trust. I have to run, but please stay in touch with us.

magistramarla
09-19-2011, 08:52 PM
Hi Piglet,
Gizmo gave you some great advice.
One of my daughters had a lot of health problems as a teen. She had kidney surgery when she was 4 to try to save the functioning of the kidney, but it had stopped working and atrophied by the time she was 12. With only one functioning kidney, she was barred from some sports, which made her very angry.
She also developed severe asthma and had to take a lot of meds. We had the same problems that you are having about the meds. She took all of her anger out on me, and it hurt me a lot. I eventually had to do what Gizmo said, and just let her make her own mistakes and learn from them. She rebelled big time - hung out with a rough crowd, and we're sure that she tried smoking and drinking. We knew that this was the worst thing possible for her asthma, but she had to learn the hard way.

Once she was pregnant with my grandson, she did a total turn-around. She finally understood the importance of taking her meds and keeping herself healthy. It was sort of fitting that Kyle has asthma, too. Now she understands from the Mom's point of view. Her move to Colorado made them both much healthier and they are both off of most of their meds, but she monitors their health carefully. She's now a super mom and extremely health-conscious.

I'm not saying that your daughter has to have as difficult of a time as mine did, but be aware that she may feel very angry and helpless about her illness, and she might take it out on you. As Gizmo told you, let her know that you will always be there for her, and seek out a counselor if you need one.
Eventually, they become adults, and then they are much easier to deal with!
(From the Mom who has survived raising 4 daughters and a son)
Hugs,
Marla

Linda From Australia
09-20-2011, 03:34 AM
Hello Piglet. It must be so hard having a child who is sick, especially when she does not understand the implications of the disease she has.

I teach Grade 6 students (11 and 12 year olds) and at times there are students in my class with serious health issues. Mums ask me, and beg me to stop their kids from doing certain things, and to make sure they do this and that. I understand how important it is for these children to make wise choices about their health issues. But when my back is turned, and their parents are not around, they run around and have fun, paying the price and suffering the consequences because of their 'rebellion' or 'denial'.

My heart does go out to you, and I wanted to let you know your daughter's feelings are all part of the grieving process.

I will let you know what I tell my students' parents when their children don't do what they are supposed to do. "Love her no matter what she decides to do".