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mohammad moner
10-09-2013, 12:47 PM
My daughter 14 years, secondary school, basketball player have lupus since the beginning of 2012.
She is suffering from proteins leakage from kidney reached 9.8 g/24 h.
she started the treatment by myfortic instead of cellcept due stomach problem (two tablets morning and other evening).
Your advice is highly appreciated.
Stop joining her basketball team or continuing.

heather123
10-10-2013, 10:53 PM
Hi there!

For what it's worth, I was diagnosed at 19 and was a huge basketball player!!! Major kidney problems was what I presented with. After I was diagnosed, I had a few crazy months of getting meds on track and struggled on to university for my first year.

I began feeling better when the weather got colder and was back in the gym playing anything I could. Sick the next spring, recouping in the summer of the following year, I tried out for the varsity basketball team in my second year of uni. Although it was incredibly hard for me, it was a huge feat and it kept me going!!! Looking back now, I can't believe the things I have struggled through but I never would have had it any other way!!!

Don't hold that girl back!!!!!!

Smiles,
Heather
(Ps, it's now 20 years later for me)

Mica
10-11-2013, 05:52 PM
Don't stop her, one of the best things my mom ever did for me was let me make all my decisions. I was 14 when I was diagnosed and had kidney and liver problems. After I got on the medication I did level out. True I wasn't athletic but I did choir and it was physically exhausting from the long hours of practice. My mom only suggested I drop choir once and I was so mad at her for that, really I was mad at the disease but being 14 it was very hard to give up control and admit I was sick. It is going to be hard but she needs to make mistakes on her own(to a limit of course) and boy did I make some mistakes. BUT I learned....eventually. Plus if she can't handle basketball this year it be easy to take her off the team. I'm 22 now by the way.
This is going to sound weird but my mom probably would have loved for someone who went through what she went through to talk to her because there is not a lot of support for the family of sick ones....so I was wondering if you would like to e-mail her or her e-mail you?

tgal
10-12-2013, 09:15 AM
Ok, now you are going to get the other side. Not better or worse advice just different. We often talk about finding a "new normal". For some of us we can't do what we used to do. It is hard to accept but the faster we find thi gs to replace it the easier it is. The last thing that needs to happen once she is stabilized is for her to sit and wish she was being her old self. Sometimes our bodies let us go back there and sometimes they don't. If they don't you have to find replacements things you enjoy. You have to find your "new normal". Lupus may change the life you thought you were going to have but it doesn't have to take away your life. It CAN NOT take away your life completely.

There are still tons of things out there to have fun doing you just have to be open to finding them. You have to get beyond the anger of what you lost and open your eyes to the new possibilites.

tgal
10-12-2013, 09:18 AM
Please ignore all my typos, mistakes and grammatical errors. Neuro started me on a new med and I am still in the adjusting process!

Saysusie
10-13-2013, 12:15 PM
I just want to "Ditto" everything that Tgal said. It is very important to remember that there is a world of "new" things you can do to make your life meaningful. It is also very important not to concentrate on what you've lost or to spend all of your energy grieving for what you've lost. Begin finding your "new normal" as soon as you can as Tgal so aptly suggested.

Peace and Blessings
Namaste
Saysusie