This is topic Parents..Kids with lyme!! :) Hey....remember about a year ago I was making that... in forum Medical Questions at LymeNet Flash.


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Posted by Amareo (Member # 1454) on :
 
Hey everyone! long time no see....I haven't been here in a long time so I hope you guys still remember who I am.

About a year ago I started making a posterboard with quotes from children with lyme disease posted on it.....that I can hopefully take to schools, fundraisers, things like that to raise awareness for lyme disease. Anyways, I'd like to start working on that posterboard again and I would love to get some more quotes from kids with lyme. So. Parents....if your younger kids have anything to say about lyme disease that they want heard, ask them, and I would be glad to put it on the poster....(basically what I do is take colored paper, write out the quote, if your comfortable giving the child's first name and age I'll put that too, after the quote, if not thats fine and Ill put it anonymous...and then I cut out the colored paper and glue it onto the posterboard). Older kids and teens are welcome to share their thoughts/quotes as well! I'm 18, but I'm still a kid at heart so. there ya go!

This weekend the Oregon Lyme Disease Network is having a strategic planning meeting and I would like to present the posterboard along with my idea of visiting/educating schools on lyme disease....so I'd love to be able to add to the posterboard (I only have about 10 quotes right now) before this weekend....but....feel free to send me quotes after this weekend too and Ill put them up!

Aunt Tinnie!! You still around??? I got your Monarche butterfly and Im so sorry I didn't respond or anything ....but I love it so much! Its on my wall! I miss you! Let me know how ya are!

Hope everyone is doing well!

------------------
Lishka

[This message has been edited by Amareo (edited 16 February 2005).]

[This message has been edited by Amareo (edited 17 February 2005).]
 


Posted by mlkeen (Member # 1260) on :
 
What a wonderful project you have started! I hope you get support.

I told my 16 year old son about your project and asked him that he had to say about lyme.

He said "Lyme? What lyme?" I'm glad to see he's getting his sense of humor back. It might not be too useful to you, but that's what I got.

I hope you new course of therapy does the trick for you.

Mel
 


Posted by NP40 (Member # 6711) on :
 
quote:
Originally posted by mlkeen:

I told my 16 year old son about your project and asked him that he had to say about lyme.

He said "Lyme? What lyme?" I'm glad to see he's getting his sense of humor back. It might not be too useful to you, but that's what I got.


Mel


LOL Mel. I asked Jess for a quote as well. "Like, whaddya' wanna' hear ?" was the response I got. Must be a teenage boy thing.

Maybe the parents with teenage daughters should pop into this thread ?

Of course if we asked them to expound on the intricacies of one of their video games, we'd get the Gettysburg Address !

"Four Score and seven Nintendo's ago.............


 


Posted by mjbucuk (Member # 843) on :
 
"There is no swelling!" said the %@^&$~ pediatrician, even though my brother couldn't walk. It really wasn't growing pains, like she said.

"School-phobia?"

"You're giving me a headache."

13 Devin, 18 Tim Bucuk
 


Posted by beach4so (Member # 3832) on :
 
Of course we remember you. How could we ever forget all the good you have done!!

When you and your mom were very active on the board just my son Dominic had lyme. Since then we found out we all have it.

This is more a cute response to a commerical but I thought you might like it.

My 4 year old knows she has lyme and has to take abx every day because of it.

One day she starts screaming for me to come see right away. There was a commerical for the product "Lyme A-Way" it removes lyme from your faucets and sinks and stuff.

Well she starts jumping up and down saying "If we drink this all the lyme will go away, yeah!!!!"

It took me forever to get her to understand it wasn't for the "lyme" we have!!

Only if it was!!!!

I will ask Dominic & Hannah if they would like to contribute to your poster.

It is great what you are doing!!

Starr
 


Posted by Amareo (Member # 1454) on :
 
Thank you starr! I would love to have their quotes on the board!

For those of you who are unfamiliar with what I'm doing....basically what I'm aiming for is something about how this disease has personally affected your kids/teens. Or how its changed their outlook. Some kids have posted their prayers, others have posted questions they asked their parents about why lyme had to happen to them...some kids came right out and said "I dont like how lyme did [this or that] to me and my family" or "It's really hard because this is how its affected me" so basically Im just looking for each quote to show how lyme has personally affected that child, and then each child has the chance to speak and be heard with what they would like to say about lyme disease and what it has done to them, taken away from them, or how its changed their life. So. There ya go. Thanks everyone for supporting me in this project!

BTW...I don't have kids, obviously, but if I did have little ones...I might ask them "If you could tell the whole wide world ANYTHING about lyme disease, what would you tell them?"

If I had it my way, the whole wide world would see this poster.

But I hope at least a lot of people will.

------------------
Lishka

[This message has been edited by Amareo (edited 17 February 2005).]
 


Posted by lookin4answers (Member # 4974) on :
 
Hey, that is a GREAT idea!

I have 2 girls with lyme....at least I am pretty sure that one STILL has lyme.

Not sure about the other one....we have not been back to the LLMD since Aug. (shame on me!)
My girls are not teenagers, but one will be there before I know it for sure. They are 7 1/2 and 20 months.

Keep up the great work!

Amanda

 


Posted by pattiecake (Member # 6424) on :
 
my 6yo son ELijah who has lyme said one day "why did GOd make tics?" "they make everyone sick"

and my 10yo daughter Hannah who gets nasty headaches and body/joint aches says "I HATE LYME!!! I AM SO TIRED OF BEING SICK ALL THE TIME!!! sob"
pattiecake
 


Posted by mlkeen (Member # 1260) on :
 
One of the things my son does say is "MOM, I forgot, I have lyme."
 
Posted by mlkeen (Member # 1260) on :
 
Lishka-

When you have all the quotes compiled can you e-mail me a copy, without names please.

When I'm more better and less busy I hope to give an in-service at our local district about kids and lyme.

I found most of our teachers know what lyme is but don't understand the neurological issues or have any idea how adjust to teach these kids.

Thanks, Mel
 


Posted by lymebrat (Member # 3208) on :
 
Hey Lishka,

Good to "see" you!!!

Derek was just talking about you the other day...he is going to Dr.Jones next week for his follow up and was hoping he'd see a new photo of you and Dr.J the horse.

I also wanted you to know that Derek and Mikayla say a prayer for you every night. And Derek still sleeps with the puppy you gave him ..even though he is 8 years old now and too old to sleep with stuffies

And the puppy you gave him, also accompanies Derek to all his doctor appointments and it even went into the MRI machine last month when Derek had his follow up MRI.

You are such a kind giving person and have helped so many children. I think it is wonderful that you are continuing this project!!

Do you still have the quotes Derek and Mikayla sent in last year? If not, I'm sure I can find them.

Derek wanted me to tell you that if he could tell the world something about Lyme, he would tell them

"I am 8 years old and have been sick with Lyme Disease for 2 years. I hope that the doctors will find a cure for Lyme Disease. And I pray that no other child will get sick from Lyme Disease and have to go through the pain I have."


And Mikayla said:

"I am 6 years old and I have Lyme Disease. Did you know that a tiny tick can make someone very sick? It can, it made me sick. My doctor is helping me get better and I hope all kids who have Lyme will get better."


And Derek wanted to add:

"Lyme Disease makes children sick and it makes them hurt. Kids should have fun and play, not be sick and in pain."


Hope this helps!

~Missy

 


Posted by Amareo (Member # 1454) on :
 
Missy!! great to hear from you! It'll be neat to have updated quotes from derek and mikayla. give them both hugs for me!! I still have the old ones too.

mlkeen, are you thinking you'd like to do kind of the same thing? take the quotes to schools? yeah I think I could do that but it might take me a bit. I dont have them all saved on the computer... but right now there aren't very many overall so it wouldn't be too hard. I would like to get as many as possible ....and I'd love to get some new kids quotes up...feel free to help me out here on lymenet in getting parents/teens to contribute!

lookin4answers -- would your daughters want to say anything?
pattiecake -- thanks! I got your quotes

All right, Im home from school today so Im gonna go to work with construction paper and markers!

thanks everyone for the support!

------------------
Lishka

[This message has been edited by Amareo (edited 17 February 2005).]
 


Posted by Amareo (Member # 1454) on :
 
Bringing this to the top.....

------------------
Lishka
 


Posted by tikbit (Member # 6629) on :
 
[So when d we get to see this . You should put all the quotes together and let us read them. as Martha stewart, and no jokes out there because she is my hero, would say "it's a good thing".
 
Posted by Tincup (Member # 5829) on :
 
There's my Lishka!!

How is it going for you dear heart? Good to see you!

And how is that goofy mother of yours? Tell her I think she looks like Mr. Potato Head.

OK?

So glad to hear you got the butterfly. Wouldn't it be fun to go to see the migration some day?

Anyhow.. good to see you are working on this project. As always.. you are helping others.

Thank you!

Love to the family...

------------------
If you get the choice to sit it out or dance...



 


Posted by Amareo (Member # 1454) on :
 
bringing this to the top...

tikbit....very soon (maybe this evening) we will take a picture of the posterboard so people here can see what it looks like. We'll put the picture up on a site for everyone here to go see.

Also, if you want to read a list of the individual quotes, I don't have them on my computer right now, they are scattered in various places. I try to stay as organized as possible, but ...lol. Yeah. The surest place to find ALL the quotes would be on the posterboard. So, someone else was asking if I could send them to her, so I should be getting those up on my computer fairly soon. (For the most part, when people have sent me quotes here, I write them in a notebook and then go to work with the construction paper).


ALSO ..anyone who wants to EMAIL me quotes...thats fine too!!

[email protected]
------------------
Lishka

[This message has been edited by Amareo (edited 18 February 2005).]
 


Posted by Amareo (Member # 1454) on :
 
bringing this subject to the top..

------------------
Lishka
 


Posted by Amareo (Member # 1454) on :
 
to the top...
 
Posted by Amareo (Member # 1454) on :
 
I am still hoping to receive more quotes from children/teens with lyme! I now have 19 quotes, 15 different kids, and I would like to thank everyone again for helping me out on this!

Please remember: quotes, short stories, poems, prayers, anything that kids have written or said that show how this disease has affected your child, that's what I'm looking for. I will try to get a picture of the poster up soon for everyone to see....hopefully very soon I'll be well enough to take it to schools and stuff to start raising awareness and understanding. Tomorrow we have our meeting with the Oregon Lyme Disease Network and I will be presenting it there with my idea of visiting schools to raise awareness.

Thanks so much everyone!

------------------
Lishka
 


Posted by nan (Member # 63) on :
 
Lishka....This is a wonderful idea and I know it will make quite an impression.

A friend's daughter, Lynsey, age 11, answers the question with "Lyme is NOT my favorite color!"

Best of luck and hope you'll share experiences with us as you educate others about lyme.

Bless your heart!
 


Posted by Biting Back (Member # 6018) on :
 
"Be careful when you go outside . . . when you get lyme disease, there aren't many doctors that can help you."

" . . . and thank you God, for Dr. C."

"Whadd'ya mean it's just a herx? This is real!" (sobbing)

Chanse, 8
 


Posted by Amareo (Member # 1454) on :
 
Thank you nan and biting back!! Got your quotes and want to say thanks for the encouragement and support

nan - yeah, I'm looking forward to when I can be well enough to start visiting places and speaking about lyme, and using this poster as a very touching visual aid. Schools are high on my list since teachers, parents, and kids need to know what to look for and how to help when someone has lyme. So I'm excited and it's neat to see how the poster itself is coming along.

------------------
Lishka
 


Posted by TheCrimeOfLyme (Member # 4019) on :
 
From my 7 year old daughter, who has lyme, as she came up to me wanting to sit on my lap not feeling well:

"Mommy, can I herx on you?"


 


Posted by Amareo (Member # 1454) on :
 
crimeoflyme -- lol....thats so adorable...and sad too.

Hey, would you ask your daughter...."If you could tell the whole world anything about lyme disease what would you say?" Those responses are especially what I'm looking to put on the poster, and if your daughter would like to say anything, that would be great. If she doesn't want to say anything that's okay too....I totally understand being 7 with lyme. It sucks! Give her a hug for me and I hope she's feeling better from her herx....

with love,
Lishka
 


Posted by lymebrat (Member # 3208) on :
 
FROM DEREK

Hi Lishka. It is good to hear from you. Mom told me you are working on a new poster. If you want you can use the pikture of me that i sent you last year.

I am feeling alot beter. I still hurt in my knees and back alot but I am getting better. I am even doing better at school. And i'm not mixing up my letters now. I got mostly 3s. like a b. And 4 1s like an A.

I am going to see doctor Jones on Thursday. I am hoping that i can stop taking my medecine but i don't think he will let me yet. I still have the puppy you gave me with our names and baseball beads on it. He goes to the doctors with me all the time. I keep thinking about the stuff you said and I know i will get better some day.

Good luck with the poster.

From Derek


 


Posted by Kait on :
 
Hi everyone. I don't know if I still count as a kid but I am 20 and a mother, I have had LD since June 2004. I had to stop playing basketball, I was on a scholarship for college. I am lucky to get out of bed in the morning. I get my iv put in on Thursday hopefully. On top of the LD I have Fibromyalgia. that doesn't help one bit.

"It sucks"

The way I look at it now, it could be worse.

Kaitlynn

------------------
Young N Infected
 


Posted by Amareo (Member # 1454) on :
 
bringing to the top
 
Posted by Amareo (Member # 1454) on :
 
bringing to the top
 
Posted by quic (Member # 5262) on :
 

My family was at our LLMD's office last July.
We were at the front desk after the visit. There was a little girl (maybe about 9) talking to my 8 year old daughter and 10 year old son.

She said matter-of-factly, "Lyme disease is evil."
 


Posted by lymesux (Member # 6248) on :
 
Lishka,
you might remember me as Aaronkatie - we remember you.

Aaron said something the other day, not sure if you could use it though - I'm trying to get help for him in school, he's having a hard time , but ofcourse since he doesn't look sick its tough.

Out of the blue this very 'young' 12 year old says 'Mom, you know what makes me very angry? I hate that everyone judges a book by its cover. I mean if not maybe someone would have helped me by now, doctors, teachers or something'

That is partly due to lyme and other things but figured I'd share it.
 


Posted by Amareo (Member # 1454) on :
 
thanks AaronKatie...yup I remember you!

------------------
Lishka
 


Posted by Amareo (Member # 1454) on :
 
to the top
 


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