only 16

Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

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only 16

Postby amom » Wed Apr 11, 2007 7:08 pm

hi my name is Lisa and my 16 yr old daughter was just diagnosed with LE in her right arm. She had a fatty tumor (benign) removed from her armpit last summer and even though her surgeon assured me they did not remove any lymph nodes, she has developed LE.
this is all still very fresh for us. we are still learning and reacting to this giant curveball that life has thrown our way.
I am at such a loss as to how to help my beautiful daughter adjust to this. she should be thinking of other things besides can anyone see my sleeve, and is my arm getting bigger and will I ever be able to really hold a pencil again.
All of your stories have given me pause and some much needed perspective. thank you all for sharing and for giving me a place to vent.
I'm sure that this will become our "normal" soon, but not today.
amom
 
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Postby patoco » Wed Apr 11, 2007 11:06 pm

Hi Amom :)

Super welcome to our family. The fact that she has a mom that cares and is there for her is going to help beyond measure.

There will be adjustments to be sure, but please know that she will still be able to do so much and fullfill so many of her dreams and hopes.

If you daughter ever has any questions or if any of us can be of help, extend an invitation to her as well to join.

Has she had lymphedema therapy and wear the compression garments?

Look forward to getting to know you and we're here for you both.

Pat O'Connor
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Postby amom » Thu Apr 12, 2007 1:07 pm

thanks Pat.
it's great to know we are not alone in this.
she is seeing a physical therapist (we love her !!!!!). at this point my daughter's arm goes down to almost normal when she sleeps so the PT is just educating us (and what a steep learning curve it is!) and making sure her sleeve and glove fit well. I think we will start some actual therapy at some point but I don't really know what to expect.
thanx for the friendly welcome L
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Postby silkie » Sat Apr 14, 2007 4:52 am

Hi Amom

I second what Pat said to have a mom that is in your corner is the best theropy .

The treatment is not at all scary in fact it is like a wonderful relaxing massage most of the time

Also something you and your daughter will be able to learn and do

The lving with lymph can be emotionally tough at times especially at 16
being different can be hard at times but falmily and good friends are worth their weight in gold

i think your beautiful daughter had a good head start on the road to lving with lymph She has YOU

Hugssssssss

Silksxxxxx
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Postby amom » Sat Apr 14, 2007 9:45 am

thanx for the warm welcome.
we are having a better week. we're just moving through the stages on our way to acceptance.
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Postby lazyleftleg » Wed Apr 18, 2007 10:09 pm

please let your daughter know that she will have all the support in the world with this forum, of all ages and backgrounds. i was diagnosed at 25 and have only coped b/c of the love and support of my family. if i can give any pieces of advice to her it is to be informed of her condition and read all that she can so she isn't afraid of what she is facing. also, wear the compression garment!! it will help tremendously and lucky for her i've seen there's one manufacturer that makes them in fun colors. wish they did that for the leg garments too! best wishes to you all.
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Postby amom » Thu Apr 19, 2007 8:29 am

Thanx LLL.
she is a voracious reader and is a reader (and occasional poster) of these forums. she's been taking in and then pulling back (it's a lot to get ones mind around).
the colored sleeves are very cool.
right now she is wearing her brown off the shelf model, but we jazzed it up with some fake tattoo sleeves. she has to have a glove though so no lymphadivas , but juzo is dyeing one black for her.
amom
 
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Re: only 16

Postby KittyKat » Sat Jun 21, 2008 5:16 pm

Hi, this is Sarah, writing. I'm 27 and I have lymphedema in both legs. I can't imagine how I would have dealt with this is at 16 years old. I'm so sorry to hear that you are going through this. I will be praying for your daughter and I hope that she can get the help that she needs. I've just joined this site this week and the people here are amazing. They really care and have so much experience and education. I hope that you can both get the support they've given me. Take care and good luck. Sarah
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