Jump to content
ACN Latitudes Forums

Add to this list


Recommended Posts

Tonight I was thinking about how this illness consumes each and every one us. Maybe it would help to share what we all have built up inside. I'll start by saying....I hate how it robbed my kid of her childhood and even when things are good you cannot help but remember how bad it was and wonder when it will strike again. I hate looking at photos and thinking that was before it struck or that was when she was better or that was right before it came back. I hate that there are no solid answers. Maybe that should be the new name.."IT".....

Link to comment
Share on other sites

Yeah, IT has hijacked our ds18's body, whatever IT is. It's as if he is possessed except that his consciousness is still there. And in the process, IT has hijacked our entire family because IT impacts everything - absolutely everything - we do anymore.

 

I took my 2 of my younger kids for a walk in the park last week while the other 2 were in classes at the science museum, leaving my ds18 at home with his dad, and nearly cried when we were talking about how nice the day & the park was & one of my son's said, "yeah, and it's nice that Alex isn't here".

 

I knew he meant that it was nice not having to wait for his big brother to finish ticcing every time we got in or out of the car & not having to be totally quiet every time a series of tics hits him because even the sound of a sigh will make it 5 times worse (& 5 times longer). And I explained to him that we need to remember that Alex and his problems are not the same thing & we want to be careful not to treat them as if they are so we miss Alex, but we just don't miss his problems.

 

And I couldn't help but think how much I really do miss my son because I so rarely get to be with him without IT getting in the way. :(

 

God bless all you moms & dads here! It has been such a lifeline to be able to connect with other parents who understand what we are going thru! Some days I think surely my sanity cannot take much more of this, but then I think of you all & do my best to switch gears & pray for all of you out there who are suffering, too!

Link to comment
Share on other sites

I'll jump in this free therapy!!! :P

 

I hate the years of childhood lost, yet always feeling I wish she wouldn't act so immature.

 

I hate that even when things are getting better, I'm just waiting for the other shoe to drop.

 

I hate the beaten down look our family displays when IT/SOT makes an appearance just to let you know you haven't won and you'll never stop looking over your shoulder.

 

I hate the un-Christian resentment I feel toward the families of kids with "medically acceptable" illnesses, how communities trip all over themselves to help those kids/families and all we have is this forum and a handful of underground doctors.....but I am grateful for that :wub:

 

I hate that this microscopic enemy attacks the BRAIN!!!!! I remember when I was first pregnant praying....God, I don't care if she isn't beautiful or popular, just make her kind and smart. Little did I know that I should have prayed for a healthy brain instead.

 

Woe is me.... I hate feeling like such a failure. I've NEVER worked so hard and long at something as I have trying to get my baby's brain back.....and never have I put this much effort into anything and gotten such crappy, mediocre results.

Edited by JAG10
Link to comment
Share on other sites

I hate the innocence IT stole from my child.

 

I hate how it changed me from a forgiving person to one that now has deep resentment and hold grudges.

 

I hate having all this info in my head and when friends speak, I have to hold back what I really want to say to avoid sounding like a know it all or a live PANDAS forum

 

I hate knowing people really don't care. Yet they think they have shown support.

 

I hate that I can still cry at the drop of a hat when I talk about my son and what he went through. I used to never be a crier but those memories are so fresh.

 

I hate that I feel I have been through so much "stuff" (not the word I would have used but it's a clean forum) yet God decided that I needed more "stuff" to happen and at the expense of my CHILD. I wonder what have I done to deserve so much struggle and sadness. I've wondered if I've done something horrible in past life and this is part of my punishment.

 

I hate the reasoning of some doctors.

Link to comment
Share on other sites

Woe is me.... I hate feeling like such a failure. I've NEVER worked so hard and long at something as I have trying to get my baby's brain back.....and never have I put this much effort into anything and gotten such crappy, mediocre results.

You are standing by your child, you are not a failure! IT takes us to the limit of our abilities, IT pushes us to give more, to be more patient, to LOVE more! And that is a good thing :)

Link to comment
Share on other sites

I hate our healthcare system that has no idea how to help our kids... and all too often, no apparent desire to even try. I hate dragging a suffering child to an endless succession of doc appointments only to be shot down in the first 10 minutes, without any tests ordered or any of our accumulated evidence considered. I hate being told that the fact we've seen so many local docs "raises a red flag": none of them offered to do anything, so why should that count against us?!?

 

I hate not knowing if the remission will last... or if the local docs will continue to write the abx scripts... or if we'll ever figure out why our whole family seem to be infection magnets, and how to clear it.

 

I hate the fact that this illness has a strong genetic component, so my other 2 boys may face the same nightmare.

 

I hate how this disorder has "broken" our whole family and not knowing how long it will take us all to heal, individually and collectively.

 

And I hate the feeling in the pit of my stomach when our PANDAS son tells me that he really doesn't remember anything from before he got sick. All of those happy, precious memories stolen, at least for now.

 

But I love the strength and support of this online community: the one place where we've always felt welcome, where we've gotten actual answers that made sense, where we've been pointed in the only directions that didn't turn out to be dead ends. Thanks, y'all!

Link to comment
Share on other sites

I hate that i am half the mom, mother i could be...i don't know that i would be the best..but i feel a far cry from even being medi-ocre....all of my children have paid for this..

I feel, and know that my children have no happy memories of ME...i am cranky, on edge, i don't want to color cause i have to see if the supplement i just gave is doing something, or was the cause of the change i am seeing..

i am concerned for my other children and their children.....

I've heard them hint to my dh that i am meaner than him(he travels, so i am also school marm, cook, bedtime person)

when he is home i don't want to be IT anymore, for anything, including fun stuff...and i equally feel ok with that...as my current and only main focus is healer

i am drained from the constant searching, watching, waiting, squeezing in daily maintence of life, like meals and try to crab a shower every so often...

AND i DITTO every single post made by others here!!!

LOVE THIS BOARD!!!

Link to comment
Share on other sites

I hate that it stole some of my daughter's self confidence.

I hate that I lost someone who I thought was a good friend but had no understanding when I scolded her children for teasing our daughter and saying she was weird during an exacerbation.

I hate that I will never rest easy and will always worry if there is another exacerbation around the corner.

I hate the denial in much of the medical community.

I hate the unwillingness of doctors to agree upon a mode of treatment.

 

 

Things I have learned and appreciate due to PANDAS:

 

I will never take a healthy child for granted.

My faith is stronger than ever before.

I have learned who my true friends are.

I have learned to be an advocate for my child.

I appreciate our daughter's bravery and determination.

Link to comment
Share on other sites

"IT"..I dislike this "IT"...no...I HATE "IT".

 

I hate it for trying to take my son captive with it's tics..ocd..anxieties..rages.

 

I hate it for causing my son to suffer in such horrific ways.

 

I hate it for keeping him homebound..when before "it" came into our lives, he was free.

 

I hate it for trying to make me feel hopeless, helpless and heartbroken.

 

I hate it for it's mystery and confusion.

 

I hate that I don't know what infectionS my son is fighting at times.

 

I hate that I have to give my son medications I'd never thought to give him.

 

I hate the thought of taking my son to a hospital and confronting the non-believing doctors who would rather treat your child with antipsychotics and not an antibiotic.

 

I hate it for coming into our lives...as if autism wasn't enough for my son to live with.

 

BUT....

 

It can never take away the love in our family.

 

It can never take away the faith we have in God.

 

It can never take away our peace and joy even when we walk through the dark valley.

 

It can never take my son's strength and bravery.

 

It can never take away my son's purpose in life.

 

It can never take away my fire to keep fighting and never give up.

 

It can never take away My Son...I won't let it!!!!!

 

 

God Bless you all...

 

Maribel

Link to comment
Share on other sites

I hate all the hate this has made me feel: against my own body, my unsupportive teachers, my ignorant friends, doctors trying to be politicians, insurance law, people who want to judge me, schools who don't want to bend their absence rules, people who COUGH ON ME in public (they are the worst), and mostly I hate that even though my life is soooo far from ruined, a lot of days PANDAS and all the hate it causes is all I can see and feel.

Link to comment
Share on other sites

I hate that I am always worrying about when it will return...

 

I hate that I am always looking/evaluating my daughter for a symptom...

 

I hate that I am left feeling unsure and inadequate to help my child...

 

I hate that I am reserved around friends and family because I am soooo obsessed that it takes concentration to NOT talk about IT...

Link to comment
Share on other sites

I'll jump in this free therapy!!! :P

 

I hate the years of childhood lost, yet always feeling I wish she wouldn't act so immature.

 

I hate that even when things are getting better, I'm just waiting for the other shoe to drop.

 

I hate the beaten down look our family displays when IT/SOT makes an appearance just to let you know you haven't won and you'll never stop looking over your shoulder.

 

I hate the un-Christian resentment I feel toward the families of kids with "medically acceptable" illnesses, how communities trip all over themselves to help those kids/families and all we have is this forum and a handful of underground doctors.....but I am grateful for that :wub:

 

I hate that this microscopic enemy attacks the BRAIN!!!!! I remember when I was first pregnant praying....God, I don't care if she isn't beautiful or popular, just make her kind and smart. Little did I know that I should have prayed for a healthy brain instead.

 

Woe is me.... I hate feeling like such a failure. I've NEVER worked so hard and long at something as I have trying to get my baby's brain back.....and never have I put this much effort into anything and gotten such crappy, mediocre results.

I so agree on everything you just said..

 

Tracie

Link to comment
Share on other sites

I just want to thank you for this post. I think I have been going through every emotion possible including feeling sorry for myself; which only made me feel guilty because she suffers more than I do.

 

I hate what IT stole from me and my family.

 

I hate the tears that IT makes my daughter have.

 

I hate the frustration that IT brings on.

 

I hate IT!

Link to comment
Share on other sites

Great post...

 

I hate that I actually cried when they told me there was not a brain tumor seen in the MRI. (I know that sounds horrible....but...I think many of you might know where I am coming from)

 

 

I hate...jeez. Really I just hate everything you guys have already written.

 

I think we need a 'what we love' posting.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...