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Lori
02-06-2010, 10:03 AM
My 17 year old daughter, 18 next month, was diagnosed last week with a "textbook case" of lupus. She has never had problems before, but over the last couple of months had the butterfly rash, then the last couple weeks it spread to her hands, toes, ears and scalp. She also has joint pain and fatigue. She probably has not missed 5 days of school since kindergarden. My question is, how do I find the line between being sympathetic and helping her learn to deal with it rather than letting it run her life any more than it has to? I want her to learn what she can and cannot do, and how to make good decisions when she's not feeling good, but not use the disease as an excuse when she doesn't WANT to do something.

magistramarla
02-06-2010, 03:03 PM
Lori,
This is a tough question, and it's one that I had to deal with as the parent of a teen-aged daughter, too. My daughter Kayla had very severe asthma from about the age of 9. It was a constant struggle with her to get her to take her meds during her rebellious teen years. She would get very angry when she realized that she couldn't do something (like a stressful sport) because of her illness. Being a rebellious young lady, she would then lash out at me, and often seemed to blame her medical problems on Mom. We suspected her of doing some self-medicating (mostly alcohol) and some risky activities with the wrong kinds of friends. We purposefully sent her out of town to college, armed with information about how to manage her asthma, and she started to take more responsibility. Unfortunately, no one reminded her that some antibiotics have an effect on BC pills. So, while she was being treated for salmonella contracted from a turtle at the pet store where she worked, she was surprised to find that she got pregnant! (We still call Kyle our turtle boy).
Kyle was diagnosed with asthma at a very early age, so now Kayla is having to deal with it as a Mom. (What goes around, comes around!) She is now an expert on asthma and understands the drugs for it and their importance very well. She is extremely responsible about her own meds, as well as her son's. That's what it took for Kayla to come to terms with her medical issues.
I also saw two extremes while I was teaching. I had two young students who had diabetes. Kaitlin was the rebellious one. She tried to fit in with the other kids, would eat candy and junk food like crazy, and tried to deny that she had a problem. She would often wind up in the nurse's office with extremely high blood sugar levels. She also tried to "use" her condition. She would "mysteriously" have a blood sugar problem just before a test. She wound up being pulled out of public school and placed in a residential hospital-run school so that she could learn to manage her disease.
On the other hand, Ashley was one of the most mature young ladies I knew. She wore a monitor on her waist that would sound off if there was a problem with her blood sugar. She had no problem with explaining her situation to her teachers and classmates, and we all knew what to do if we heard the thing. However, Ashley took pride in NOT having the thing go off. She was diligent about her diet and her meds. Because of this, I had no qualms about taking her to an out-of-town convention. My husband and I and all of her friends who were in the van kept a close eye on her, and she had a great weekend. (Her mother was a bit shaky about it, but I kept in close contact with her). Since I've left the school, I've heard that Ashley is in the National Honor Society and has become the Queen of the Drama dept., starring in the yearly musical.
My point with all of these stories is that much depends upon the girl herself. You are lucky that your daughter is already past those awful years of 13-16. (I've survived 4 daughters going through those years). She also already has a passion for her softball, so I'm guessing that she is a very goal-oriented young lady. You can help her to learn how to manage her meds so that she feels the best that she can. After that, her own personality and sense of responsibility will have to take over. I know that depression is one of the side-effects of Lupus, and many of the folks on this forum deal with it. Luckily, I don't. You might want to subtly keep an eye on her for signs of it, especially if her disease is affecting her performance in her games. (The season is coming up, isn't it?) Otherwise, keep doing what I'm sure you are good at - being the cheering Mom on the sidelines and her best advocate.
I hope this helps,
Hugs,
Marla

Lori
02-06-2010, 07:52 PM
Marla, Thanks for the advise. She is pretty goal oriented, and a good kid. Has a 4.5 GPA and is loaded with all AP classes this semester. My concern, I guess is that the ball and the grades have always come pretty easily for her. Until this semester, I would rarely see her study. I know this will be the most difficult thing she has faced. I hope that she will push herself when she needs to. I think it's unrealistic to think that she can play college ball and miss practice 2-3 times a week because she's tired. And I think classes and ball are a big load for anyone. I hope to see her give it her best shot and if she decides it's too much, then give up the ball. I don't want her to give in, but make smart decisions on what she should do. As of now, she thinks as soon as the drugs kick in she's going to feel fine and it'll be like she doesn't have lupus. I don't think it's going to be that easy.

puzzled
02-06-2010, 09:36 PM
It is hard to know what the future holds when given a diagnosis such as lupus. I have had symptoms since i was 25 but it took 6.5 years to be diagnosed. This meant i often had periods where i didn't function very well and study, exercise and work were difficult to attend to. But i also had times where i do think i was in remission and life was good and normal. Since beginning medication - plaquenil and prednisone, i am starting to feel more like myself and i'm hopeful i may be able to be my normal self again. Like your daughter i too am putting high expectations on my meds to fix me but deep down i do know that it might not be the case and that life may get a little rough.

My cousin has lupus and has been on plaquenil for a long time and she tells me that it gives her good disease control but every now and then she has to listen to her body and just stop everything or she will end up sick. So i have taken on this advice. That and i will be doing my best to never miss a pill in my life as i know the alternative is a life of pain and fatigue. I wish your daughter the best of health. She is so young and it's not fun facing lupus at such a young age (or any age for that matter).

wolfwhisper
02-09-2010, 03:45 AM
Hi Lori,
I hope that this may help some, as I can only rely on my own experiences from side of depression (my anti-depressant meds are working great). I was forced to give up my favorite sport a few years after the official diagnosis due to servere respiratory problems that have yet to be truely diagnosed. Since everyone is different, I can only guess, but I think that your daughter may become dissappointed if she is forced to give up the game. Unfortunatly, It can be hard when a friend wants to play an active game, while you can't. Like Magistramarla said, you should watch carefully for signs of depression and talk with your daughter about the problems she's facing and be as supportive as you can. Remind her that there may be days that she won't be as active or feel as well, and it's those days that she shouldn't strain herself too much. Please remember that depression has many faces, in my case, the impression that I don't have any real friends (no one believed that I was ill, and it made me feel horrible and alone), thoughts of being left out, and lack of appetite.
Nicole

Lori
02-09-2010, 06:50 AM
Wolfwhisper,
Would you have been able to compete at the collegiate level? Her only symptoms at this point seem to be the rash, which is going away, joint pain and fatigue. She's on predisone and paquinill. It's a D2 college, so not quite as competative as D1 would be.

teresaa40
03-29-2010, 11:36 AM
Personally, I usually try to do things that I want to do rather than thinking, what can I do. If I made my decisions based on what Lupus says I can do given my symptoms, I would probably not do much of anything, and would have missed out on some great memories and experiences. Given that, I also take into account any absolute physical limitations, so,for instance, if I had moderate to severe respiratory symptoms, I would avoid things that would certainly compromise that, but, I do not let Lupus take away those things I think I can manage. If I then get into it and find I can't physically do it, I am honest with myself and drop out,but, at least I know I tried, and have no regrets based on feeling like I gave in before had to. I can still dance, I just can't do a Jive. I can still go shopping, I just can't go for a full day, on my feet, up and down stairs. I can still stay up late, I just can't do it without sleeping in the next day and having a nap. I can play with my kids, I just can't play tag or dodge ball. It's all about weighing what you can do against what you can't do, and not letting Lupus dictate that, but, always listening to your body, even on a day to day basis, and not making commitments beyond what you know you can do.

Like they say in top gun, don't write checks your body can't cash. I love that line.

Perhaps your daughter could give the AP classes a try, and then, when and if she finds she can't handle it, choose which ones she is able to drop in favor of the ones she really wants to keep. She must prioritze things, and think of them in the terms of real estate. What I mean by that is this. If her day was like a real estate, and the things she does in a day are the buildings she puts on that real estate. Each building has to be assigned a value. So if one class is a required class that she must take this semester, that class is valuable real estate. If it is a class she really gets a lot of satisfaction out of, then it's value is right behind the required class, but not as valuable. At the same time, taking care of herself must have a higher value than classes, so, resting, eating, must have a higher priority. A real estate agent worries less about selling a low value property than one of higher value, as the return is so different. To focus on selling a lower value property , sacraficing the potential sale of the higher value property is bad business and that agent would not only lose future business with higher end clients, but, they could lose their business entirely. In the same token, your daughter's personal real estate has to be weighed in value given the return expected. Yes, she needs certain classes and credits based on the degree she wants and the timeframe she wants to get it in, but, it doesn't make sense to sacrafice her rest and caring for her self if that means she risks failing a class and then just has to retake it later on, costing her more time and money than if she had just put it off til her class load lessens.

It also applies to sports, and any activity. Give it a value, and decide where it is in comparison to other things in value. That will help her to make sense of the deciisions. Anyway, I ramble. Hope some of that made sense.

Thunda
06-06-2011, 06:32 AM
Hi Lori,

From the sound of it your daughter has a very level head and will be a wonderful women. Congrats on raising a great daughter. Like many people dealing with Lupus she will have her ups and downs. The main thing you need to do is always be a listening ear. Having support is one of the main things that helps keep people with Lupus going. As far as her feeling "normal" she will have those times. I think I can speak for every lupie who is a part of this forum, we have good days, good weeks, good months, etc but we also have bad times. I know you maybe worried and scared about your daughter taking on too much but she will realize what she can and can't handle.

Its great that she is an athlete. My Rheumy actually encourages me to stay active. He said it helps. I am an avid martial artist and I play tackle football. I actually started playing tackle football after being diagnosed in 2007. Football helped me from going into a deep depression about being diagnosed. At the time I had similar symptoms to your daughter the rash, fatigue, joint pains and terrible blisters on my hands. If ball is something she loves then she should continue. Trust me holding onto something like that will help her deal with whats going on with her now. As far as being able to play college ball, of course she can. If she explains her situation to the coaching staff I'm sure they will be understanding. Also, if she does happen to have times when she's feeling lupie and can't practice which may happen if she can at least go sit at practice it will show her dedication. When it comes to her AP classes I agree with Teresaa40. Let her try her work load and if she needs to cut something out then allow her to make that decision.