Whataya want from me

[Johnsmom]

Thanks for posting this Jill. As you know we are just over a week post IVIG so this couldnt have come at a better time.

Dont beat yourself up. You are an amazing mom to that beautiful hazel eyed girl!

 

I know this song has no intention of being related to a PANDAS child and their parent....

I was driving to work this morning trying not to feel too sorry for myself with the 4 weeks post-ivig ups and downs blues, then this song came on and I just completely, COMPLETELY lost it sobbing! I felt like my dd10 telling me "you think it's rough being you, try being me."

 

Just don't give up I'm workin it out

Please don't give in, I won't let you down

It messed me up, need a second to breathe

Just keep coming around

Hey, whataya want from me

Whataya want from me

Whataya want from me

Yeah, it's plain to see (plain to see)

That baby you're beautiful

And it's nothing wrong with you

(Nothing wrong with you)

It's me, I'm a freak (yeah)

But thanks for lovin' me

Cause you're doing it perfectly

(It perfectly)

There might have been a time

When I would let you step away

I wouldn't even try

But I think you could save my life

Just don't give up I'm workin' it out

Please don't give in, I won't let you down

It messed me up, need a second to breathe

Just keep comin around

Hey, whataya want from me (Whataya want from me)

Whataya want from me (Whataya want from me)

Just don't give up on me

(Uuuuuuh) I won't let you down

No, I won't let you down

(So I) just don't give up

I'm workin it out

Please don't give in, I won't let you down

It messed me up (It messed me up)

Need a second to breathe

Just keep coming around

Hey, whataya want from me

Just don't give up I'm workin' it out

Please don't give in, I won't let you down

It messed me up, need a second to breathe

Just keep coming around

Hey, whataya want from me (whataya want from me)

Whataya want from me (whataya want from me)

Whataya want from me

What Do You Want From Me (Adam Lambert)

[EmersonAilidh]

Oh, Emerson, you break my heart! You sound so much like my DS13! Bright, perceptive, sensitive and maybe a little challenged in the social department! But look at the bright side: maybe you realized it a little too late, but you DID finally realize that you'd "gone off," waxing Icelandic when your audience didn't really care. So, maybe next time, you'll find yourself thinking twice before going into launch mode.

 

Or, better yet, you WILL make some friends who are either equally-minded, so they don't care and fully understand when your brain (and mouth) kick into overdrive, or ones who tend to be quieter and more flexible, so they don't mind hearing your vocalized mind chatter or following your idiosyncratic discussion topic leads (like blood parasites). Really, all it takes is one person with "puzzle jags" where you have "puzzle jigs," and you'll likely have a friend for life! Don't give up! Don't retreat and hibernate; don't add self-directed loneliness to the tough path you already walk!

 

I don't know if you've seen it, but there's a paperback book out called "ADHD & Me." I've forgotten who the author is, but it is sort of a mix of an autobiography and a self-help book by a boy -- first junior high age and then through high school and into college -- who had ADHD (and it would appear some Aspberger traits, as well) who faced impulse control issues, socialization challenges, etc. at school and at home. He tells some hilarious and some heart-breaking stories of impulsive acts, trying to fit in, then sometimes withdrawing because he's concerned he'll NEVER fit in, etc. And at the end of each chapter, he sums up some thoughts about how you can avoid falling into some of the same traps he did at first, etc.

 

Hang in there!

 

I don't wanna break your heart!

I hate how everything I post ends up sounding negative somehow.. I am a generally happy girl.

I've dealt with my P.A.N.D.A.S. for years. Ostracization is something I am used to, haha. I know I'll eventually found my match! Well, I already found her. My bestfriend's name is Alyssa but she moved to Indiana a few months ago. We used to be together everyday. I think that's part of why I feel so lonely this time around, I'm not used to dealing with exacerbations on my own. Being on my own is what made me reach out to the people on this forum though! So I guess there was an upside. But, this one will be over soon enough! They all end eventually.

 

I'll check out that book! Thank you for the recommendation.

I hope your daughter's doing well! Feel free to talk to me anytime.

[JAG10]

OMG! The tears just won't stop. I have no words. This song is so poignantly appropriate. We are 5 weeks post IVIG and when I see my pale anxious little guy I wish I could transer the Pandas on to me. I swear I even got mad at God once and prayed to satan to sell him my soul in exchange for my son's life back. I still would willingly do it. He's had it since he was 22 mos as per Dr. K and we just found out when he had a massive classic pandas episode in March., hes 8.5 now. So many episodes over the years for different things. We treated symptoms- speech therapy, sensory integration, etc etc but never even knew about the cause being pandas.

Jodie

 

 

When I first heard this song several months ago, it hit home. However, for me, it was my conversation with God and me telling him that even though at one time I was mad when our daughter first became ill, I had come back around but still wanted to know what He wanted from me.

 

While I'm being slightly philosophical, here's what I finally decided was wanted from me (I begin speaking about 4 minutes in, once I've been introduced): http://www.watersedgefrisco.com/video/05232010.php

 

Oh, Deb! What a wonderful spokesperson you are for us all! I can relate to those struggles with faith... what did I do? And, Okay, really, I've had enough now-moments.

 

Way to go on the Pepsi Refresh plug! The flock has heard and responded!!

 

Thanks! Our pastor sent out an e-mail to the whole congregation the day I spoke with a voting link (400-500 members or more) and then sent out another reminder with a long explanation of the illness and a link to vote this past Thursday. I am so grateful that they have been behind us on this! My gut instinct when asked to speak was to say "no" as I don't like public speaking. However, I knew that I was being asked for a purpose and agreed to do so. I'm so grateful to have been given that opportunity!

 

 

Deb- do you think the flock voted today??? I know #6, we're good...right????

[Stephanie2]

OK, if I were not emotionally numb from the lexapro (and multitude of supplements) I require to keep me going through this journey, I would be crying my eyes out right now!

 

I have to say that I have been down this road with both kids and I have responded so differently with each boy. With my first, when his personality did an about-face for the first time, I came down very hard on him with all sorts of discipline programs and I fought him on every ritual/compulsion b/c I just had no idea what I was dealing with! Didn't get pandas dx until we were 3 years into it! My poor boy has been through so much and he is such a trooper at the age of 5. He is so mature for his age b/c he has had to overcome so much...

 

But with my DS2, I am just so permissive and understanding and loving with his problems. I try not to let him become a brat b/c he is 2 and does need some discipline, but he is definitely getting a lot more patience with us b/c we know we just have to ride it out with him to the finish line.

 

I used to feel so sorry for myself and my husband but now I just really focus on the kids' happiness b/c I know that they need me now more than they will ever need me. I have finally learned to put my feelings aside - I guess all moms eventually learn that, maybe not to the extreme that we are forced to...

 

At the same time, as my children heal I am trying to take my life back!! Boy do I need a life!

[DebC]

OMG! The tears just won't stop. I have no words. This song is so poignantly appropriate. We are 5 weeks post IVIG and when I see my pale anxious little guy I wish I could transer the Pandas on to me. I swear I even got mad at God once and prayed to satan to sell him my soul in exchange for my son's life back. I still would willingly do it. He's had it since he was 22 mos as per Dr. K and we just found out when he had a massive classic pandas episode in March., hes 8.5 now. So many episodes over the years for different things. We treated symptoms- speech therapy, sensory integration, etc etc but never even knew about the cause being pandas.

Jodie

 

 

When I first heard this song several months ago, it hit home. However, for me, it was my conversation with God and me telling him that even though at one time I was mad when our daughter first became ill, I had come back around but still wanted to know what He wanted from me.

 

While I'm being slightly philosophical, here's what I finally decided was wanted from me (I begin speaking about 4 minutes in, once I've been introduced): http://www.watersedgefrisco.com/video/05232010.php

 

Oh, Deb! What a wonderful spokesperson you are for us all! I can relate to those struggles with faith... what did I do? And, Okay, really, I've had enough now-moments.

 

Way to go on the Pepsi Refresh plug! The flock has heard and responded!!

 

Thanks! Our pastor sent out an e-mail to the whole congregation the day I spoke with a voting link (400-500 members or more) and then sent out another reminder with a long explanation of the illness and a link to vote this past Thursday. I am so grateful that they have been behind us on this! My gut instinct when asked to speak was to say "no" as I don't like public speaking. However, I knew that I was being asked for a purpose and agreed to do so. I'm so grateful to have been given that opportunity!

 

 

Deb- do you think the flock voted today??? I know #6, we're good...right????

 

Jag10 -- I think they did! In fact, our pastor texted me a bit earlier in the evening to see how I was doing and to let me know that everyone was voting. They have been a huge support and are letting the Dallas support group use one of the classrooms for our meeting location. They are an amazing group of people! I love it when I walk into the building and members approach me and say "We are at number 6!" They feel like they have become a part of this movement as well!