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Whataya want from me


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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)

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"you think it's rough being you, try being me"......... didn't have to read any further and the tears came. Sometimes I get down about all the "stuff" (in addition to PANDAS) I have gone through. Remembering my little 4 year old boy scared, suddenly riddled with bad tics, incompacitating OCD, etc...........makes me feel like a jerk for the "woe is me" feeling I get sometimes. I can't imagine what was going on in his little head, but I know he was scared.....and to not be able to understand what was happening to him........UGH! :(

 

I am not giving up....my babies, don't worry......Mom will NEVER give up!! I LOVE you both so much!

 

p.s. Thanks Jill...I had to hide in the bathroom from my boys while I sobbed myself!! :)

Edited by P.Mom
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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

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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

Edited by DebC
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Dd10 came home from her first day of activity camp today; it's just from 9-12 to get out a little bit and let me see a couple clients in the summer.

 

She says to me "Why am I so different? Why do other kids think I'm weird all the time? I mean, they (2 other girls) were nice to me, but I could tell they liked each other more and thought some of the things I say were weird."

"Did you say something weird?"

"Yeah"

"What?"

Head down, "I'll tell you later. So, PANDAS makes me do that? When is that gonna get better?"

 

Really soon......

 

Then she pivoted right into a conversation with her little sister about "Annoying Orange"...Youtube it if you are so fortunate as to not have had the pleasure, but you will see how this subject is not going to get you in with most preteen girls. At least she's moved on from Mario Bros.....

 

Is potentially negative contact with her peers worse than no contact at all socially? She was doing better weeks 1,2,3 post ivig, but other symptoms were worse. Now, week 4-5, those are better and cognitive/regressive behavior stuff is worse.

 

It's like Forrest and his box of chocolates....

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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!!

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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!

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Well she'd have plenty to talk about with my 11 and 14 year old boys! They think Annoying Orange is hilarious.....

 

 

Dd10 came home from her first day of activity camp today; it's just from 9-12 to get out a little bit and let me see a couple clients in the summer.

 

She says to me "Why am I so different? Why do other kids think I'm weird all the time? I mean, they (2 other girls) were nice to me, but I could tell they liked each other more and thought some of the things I say were weird."

"Did you say something weird?"

"Yeah"

"What?"

Head down, "I'll tell you later. So, PANDAS makes me do that? When is that gonna get better?"

 

Really soon......

 

Then she pivoted right into a conversation with her little sister about "Annoying Orange"...Youtube it if you are so fortunate as to not have had the pleasure, but you will see how this subject is not going to get you in with most preteen girls. At least she's moved on from Mario Bros.....

 

Is potentially negative contact with her peers worse than no contact at all socially? She was doing better weeks 1,2,3 post ivig, but other symptoms were worse. Now, week 4-5, those are better and cognitive/regressive behavior stuff is worse.

 

It's like Forrest and his box of chocolates....

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Well she'd have plenty to talk about with my 11 and 14 year old boys! They think Annoying Orange is hilarious.....

 

At the height of a PANDAS exacerbation about 3 months ago (just before a steroid burst) my son was being particularly annoying during homework time - obviously on purpose. I called him on it and he denied trying to annoy me. Later, as we were riding in the car he broke down and said "it's true - It's true... I tried to annoy you. I don't know what's wrong with me. I've been trying to annoy my friends all day. They say the want to be my friend but I am being annoying and I just can't help it.. face it.. .I'm a freak. I don't want to be annoying, but I feel like I have to do it lately. I'm just a freak".

 

At that point, we were waiting for our first phone consult with Dr. T, and I told my son that the doctor from New Jersey would be able to help. He said "that's what you always say... but none of the doctors have helped yet!".

 

Well... we did not give up and we will not give up. We are lightyears ahead of where we were in March. We worked with Dr. T, Dr. B and local docs. We now have blood tests and surgery under our belt and we are working on the future.

 

So if my son says "whatta ya want from me" my answer will be - "to hang in there and do your best while we fumble and try to find our way in the dark... and to have faith that we will find a way out...together".

 

 

Also - my son apparently has not yet found the annoying orange... but he is a big fan of the Grapist... which is annoying and rude and insulting in my mind.. but SO middle school appealing!

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Thanks for posting the song! It really does hit home. Whenever my ds10 hears it in the car, he immediately says "Don't change the station!" (I'm a big radio channel-surfer in the car. :) ) I've peaked at him in the mirror when it's on, and he really listens closely and never talks during this particular song. I think it really speaks to him, and I feel glad that there's something like that he can relate to, and hear his own feelings in. It does make me so sad though.

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She says to me "Why am I so different? Why do other kids think I'm weird all the time? I mean, they (2 other girls) were nice to me, but I could tell they liked each other more and thought some of the things I say were weird."

"Did you say something weird?"

"Yeah"

"What?"

Head down, "I'll tell you later. So, PANDAS makes me do that? When is that gonna get better?"

 

Being social takes a lot of work from us. This is the summer going into my sophomore year, & I can count the number of times that I have left my house on my hands. When you think of Autism disorders you more than likely think of children that don't do much talking, when really a lot of us have a tendency to BURST into a random subject where it's hard to STOP talking.

I was with a few of my friends right before summer started, only one of which knew about my P.A.N.D.A.S. since the other two were relatively new to my life, & someone made a comment about the volcano in Iceland, which led to someone making a sarcastic comment about Greenland. Some little bell in my head went *BING* & I was off. For fifteen minutes without a SINGLE response from anyone else in the room I blabbered about Greenland. Erik the Red, their financial independence from Denmark, how their fishing industry is failing... It was only when I stop to took a breath that I saw the looks on everyone's faces & immediately started crying (which did not help me look any less crazy..)

 

Lately when my parents (Mom & stepdad) ask me if I have plans you can see the hope in their eyes that I'll say something besides no, & I can see the disappointment when that's all I say. My little outbursts definitely don't help in the "making friends" department, especially at fifteen years old when I would rather talk about blood parasites than Justin Bieber or whatever else. While it definitely isn't easy living with P.A.N.D.A.S, I hate seeing that look on my parent's face. I can't imagine what it must be like for our parents to see us like this. I hope your daughter has a good time at activity camp, & I wish the both of you well. Eventually she'll get to decide whether it's better to be socially awkward or not social at all (I'm leaning towards not social at all, personally), but as long as she has you there to help her through it she'll be fine. <3

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Dd10 came home from her first day of activity camp today; it's just from 9-12 to get out a little bit and let me see a couple clients in the summer.

 

She says to me "Why am I so different? Why do other kids think I'm weird all the time? I mean, they (2 other girls) were nice to me, but I could tell they liked each other more and thought some of the things I say were weird."

"Did you say something weird?"

"Yeah"

"What?"

Head down, "I'll tell you later. So, PANDAS makes me do that? When is that gonna get better?"

 

Really soon......

 

Then she pivoted right into a conversation with her little sister about "Annoying Orange"...Youtube it if you are so fortunate as to not have had the pleasure, but you will see how this subject is not going to get you in with most preteen girls. At least she's moved on from Mario Bros.....

 

Is potentially negative contact with her peers worse than no contact at all socially? She was doing better weeks 1,2,3 post ivig, but other symptoms were worse. Now, week 4-5, those are better and cognitive/regressive behavior stuff is worse.

 

It's like Forrest and his box of chocolates....

Your dd sounds like my ds with the ivig. We are 5 weeks post IVIG. 1st 3 weeks were lots of flipping and weeks 4 and 5 have been anger, aggression, mean, loud, poor memory and those dilated pupils freak me out.

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Jodie- Your ds is a week farther along then my dd10. I emailed dr.K the day after we got home from ivig how beautiful my daughter's hazel eyes are now that they weren't all blacked-out! Well...that lasted for the first week or two, now they are going back and forth between crazy dilated and normal. We are waiting for this to stabilize too.

Edited by JAG10
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Being social takes a lot of work from us. This is the summer going into my sophomore year, & I can count the number of times that I have left my house on my hands. When you think of Autism disorders you more than likely think of children that don't do much talking, when really a lot of us have a tendency to BURST into a random subject where it's hard to STOP talking.

I was with a few of my friends right before summer started, only one of which knew about my P.A.N.D.A.S. since the other two were relatively new to my life, & someone made a comment about the volcano in Iceland, which led to someone making a sarcastic comment about Greenland. Some little bell in my head went *BING* & I was off. For fifteen minutes without a SINGLE response from anyone else in the room I blabbered about Greenland. Erik the Red, their financial independence from Denmark, how their fishing industry is failing... It was only when I stop to took a breath that I saw the looks on everyone's faces & immediately started crying (which did not help me look any less crazy..)

 

Lately when my parents (Mom & stepdad) ask me if I have plans you can see the hope in their eyes that I'll say something besides no, & I can see the disappointment when that's all I say. My little outbursts definitely don't help in the "making friends" department, especially at fifteen years old when I would rather talk about blood parasites than Justin Bieber or whatever else. While it definitely isn't easy living with P.A.N.D.A.S, I hate seeing that look on my parent's face. I can't imagine what it must be like for our parents to see us like this. I hope your daughter has a good time at activity camp, & I wish the both of you well. Eventually she'll get to decide whether it's better to be socially awkward or not social at all (I'm leaning towards not social at all, personally), but as long as she has you there to help her through it she'll be fine. <3

 

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!

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