Not sure what to do...

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Regular Member

Date Joined May 2008
Total Posts : 57
   Posted 8/6/2009 2:43 PM (GMT -6)   
So first off, this week has not been to great for me but I'm pushing by. I hope everyone else is doing alright. As some of you saw I was in the newspaper, front page in the Review Journal about my story and lupus. From that article I got tons of feedback and I even got a call to talk on a radio station, which I did for awareness, I was so nervous! But it turned out alright. My mom also got another call... Make-a-wish called and they want to grant a wish for me. I don't know why but this is really stressing me out because for some reason I feel like I don't deserve it. My kidneys have not yet failed and Im still in okay shape for lupus, just the usual arthritis, myalgia, fatigue, and some vasculitis. I feel like a younger kid should get this. I did talk to my mom about it though and she says I deserve it, but I feel like I should use my wish to help others... but Im really confused. Isn't this suppose to make me feel good?
16 years old. SLE dx. 2008. Medications: Prednisone 10mg. Plaquinel 300mg. Methotrexate 12mg a week. Folic Acid. Calcium. Vitamin D.

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 8/6/2009 3:51 PM (GMT -6)   
Hey bigsanfer! First off let me say great job on spreading awareness! That is awsome about your story and then being able to tell about it on the radio :)!
 about the make a wish, I am sure your feelings are normal, that is a once in a life time oppertunity that most people don't get. If they are contacting you, thats a pretty good sign you deserve it, but it is only up to you! If you really feel like you want to use your wish to help others, than by all means do it. Let us know what you decide



21 yrs old, Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Cytoxan, Prednisone, Lupron, Zofran, Lisinopril,  Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 8/6/2009 4:25 PM (GMT -6)   
You take that wish girl!!!! Make-A-Wish is a huge foundation with lots of supporters. It could also be another way to generate awareness. You do "deserve" to go do something fun and carefree!!!! Laughter is one of the best meds in the world. So go do something crazy fun that you've only dreamed of! You didn't approach them...they approached you. Let us know what you decide to do. Judy

Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 8/6/2009 5:31 PM (GMT -6)   
You are too sweet to want to pass up this opportunity to a younger kid, but to many of us-you are the kid around here! I think you should take this opportunity and have a great time with it. Its a great way to spread awareness and if you really feel guilty, maybe you can donate something to this organization to keep it going. That might make you feel better to know that you are helping such a cool organization that once helped you out. I definetely say GO FOR IT! :)
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 8/6/2009 9:51 PM (GMT -6)   
Take that wish and do what's in your heart. Have the fun some of us can't and then come back here and tell us all about it!!! Maybe you can find some other kids with disabilities to share it with, where you all go do something, you know, split it with another child and do it like that. If you like celebrities, maybe you can have one meet you at a pediatric cancer wing or somewhere like that. You sound like a great kid and I have no doubt you will figure out just the right thing to do with it. And maybe you can get the press and others who want to cover the story to donate to the lupus forum/org too. Maybe your family would like to make some memories (moms like those photos) with you too and it can be a great gift that way too. There are many ways to share it and no matter what you do, you will likely be helping someone else just by using your wish.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

Regular Member

Date Joined May 2008
Total Posts : 57
   Posted 8/10/2009 3:14 PM (GMT -6)   
Thanks for all the great advice! If I do take the wish I am going to donate monthly and volunteer whenever I am able to. Im still not sure if Im going to take the wish though.. still deciding what to do if I do.
16 years old. SLE dx. 2008. Medications: Prednisone 10mg. Plaquinel 300mg. Methotrexate 12mg a week. Folic Acid. Calcium. Vitamin D.

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