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Old 06-24-2011, 09:37 PM
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blood tests came back


lupus and sjogrens. its permanent, but now we know what it is. i guess i had hoped for maybe at least a year with E to know how my body reacts to different seasons. i guess not though, cuz now i'm adding two auto-immune diseases. oh well, make-a-wish is giving me a service dog.
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 06-24-2011, 09:49 PM
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*Hugs*

You're ahead of your time, getting these at your age. Wikipedia bamboozled me about the Sjogrens, and I know a little about SLE.

Auto-immune conditions have their limitations, but you're a smart, strong girl, and I know you can keep well.

Hey, good news about the service dog! Any idea when?
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Old 06-24-2011, 10:59 PM
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thanks chel, thats really sweet.
the representative called my mom today from make-a-wish. she is going to call my drs to comfirm diagnosis and then she will ask my wish. its a tough decision because i want my family to take a vacation. maybe when the restaurant starts making real progress. my mom said i should ask for the dog but i still feel kinda selfish.
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 06-24-2011, 11:12 PM
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Originally Posted by gr33nr0se View Post:
my mom said i should ask for the dog but i still feel kinda selfish.
This Make-a-wish will bring a benefit to your whole family, as this will be like having another member of the family. The dog will watch over you while everyone is getting on with their other stuff. You've often mentioned that your younger siblings have to watch over you, and now they can get on with their homework while the service dog keeps you company. It should make a big difference to how the household runs.
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Old 06-25-2011, 12:53 AM
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I am going to just throw out some information that I have personal experience with.
My son has an auto-immune disorder called vitiligo. The body attacks the pigment in the skin. He had grown to live with it.
My son is a US Marine and was vaccinated and it seemed to increase his allergies and I asked that he begin taking probiotics.
Long story short... the probiotics changed something within his gut / system and the pigment began to return to his skin. Unfortunately he is unable to continue taking the probiotics during active duty, but I hope to experiment with this again when he is home again.
I purchased Natren Healthy Trinity for my son. He was not taking any other vitamins or minerals at the time.
I share this story with the hope that it might help someone else.
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Old 06-25-2011, 11:26 PM
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gr33nr0se,

I'm so sorry to hear about your test results. I know you'll be able to handle it, though, and will live a life that makes a difference in this world. You are too smart, too strong, to do anything else.

I am glad you are getting a service dog. It is important in helping you to keep doing everything you want and need to do.

I also think service dogs are a bridge to other people, a greeting card that helps them understand whatever condition a person has. People ask about the dog and what he does for you, and it's a chance to educate them on the disease and effect on everyday living.

You are such a special person. Two more conditions are not going to change that. If I was your parent, I'd be astounded by you and proud of you. You are amazing.
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Old 06-26-2011, 06:29 PM
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what Endless said.
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Old 06-26-2011, 09:35 PM
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thank you endless, that made me feel really good. i'm thinking of making another presentation on all this stuff when i get back to school.

btw, its realy random, but i'm sooooo excited. i;m visiting my #1 college choice tomorrow, albany. i would've looked at columbia and fordham, but albany is much more liberal and it's much closer to home. besides, i can get my masters in special ed and my phd in communications disorders there. its a double whammy
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 06-27-2011, 08:21 AM
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You've got a great head on your shoulders gr33nr0se, and I'm impressed by your college plans. I had no clue of what I was going to do when I went off to college, and I'm still not sure what I'm going to do when I grow up.
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Old 06-27-2011, 03:38 PM
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Hi Gr33nrose, i am relatively new to epilepsy and this site in general so my knowledge is not up-to scratch on most matters. However, what i can say after reading many of the posts on this site is that you are extremely intelligent brave young woman.

I wish i had even half your strength and amazing attitude. Your posts have really touched my heart and made me think about my own attitude towards my situation in a serious way (also i love your signature).

I wish you all the best with your future academic studies i am sure you will do great considering how smart you are.

Kind regards
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Old 06-27-2011, 09:27 PM
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thank you so much. this sounds cheesy, but the fact that i have the support from you all, makes going through everything so much easier. your confidence in me makes me feel stronger than ever
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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Old 06-28-2011, 06:37 AM
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Oh, gr33nrose


You've always impressed me from the beginning. But now that you've been "blessed" with these 2 auto-immune issues, I'm even more impressed with the way that you're handling them, and making plans for the future as well.

We will always be here to support you no matter what, please remember that. The service dog would be a wonderful addition to you and your family. It may seem as if you are being selfish, but in reality, it is not being selfish, it is thinking of EVERYONE in your family even though you will be getting the most use from the dog.

Going into the special ed field is a wonderful thing to do, and many students will learn a lot from you and your determination as well.

Many hugs to you. I am so VERY proud of you. ((((HUGS))))
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Last edited by epileric; 06-28-2011 at 07:26 AM.
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Old 06-28-2011, 12:46 PM
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thank you meetz. (hugs)
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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