Huh! Most people just don't get it!

[kmom]

Thank goodness for this forum to allow me to vent and to make me feel sane! Just talked to a neighbor whose son was here playing. She had heard about the past 4 months of our "rough patch" since the PANDAS Dx struck. She was very nice about it but went on to say, "Yeah, I had a friend in college who had something similar. It was called Belles Palsy and she had the facial tics but soon enough she got through it and she was normal again." Of course, the bells and whistles go off in my head and thoughts of "Well it's way more than that and I want to whip out all the science and symptoms and the uncertainly of our days like how will things be when school start..." but all I got out of my tired head was that the OCD has been the hardest to deal with and then thought, "Oh why bother! I'm too tired to explain as I am making dinner and getting ready for a trip to Dr. B tomorrow." So as I thought all of that other stuff on the inside, I just said, "Well have a nice night and I'll send your son home in a few minutes." And I am thankful daily that we're not dealing with something worse b/c we have some good days. But, I keep telling my mom that no one gets it until they live it.

[forjpj]

So, so true!!!!

[tired mom]

I get it. I live it and I HATE IT. Good luck with your appt.

[lyme_mom]

Thank goodness for this forum to allow me to vent and to make me feel sane! Just talked to a neighbor whose son was here playing. She had heard about the past 4 months of our "rough patch" since the PANDAS Dx struck. She was very nice about it but went on to say, "Yeah, I had a friend in college who had something similar. It was called Belles Palsy and she had the facial tics but soon enough she got through it and she was normal again." Of course, the bells and whistles go off in my head and thoughts of "Well it's way more than that and I want to whip out all the science and symptoms and the uncertainly of our days like how will things be when school start..." but all I got out of my tired head was that the OCD has been the hardest to deal with and then thought, "Oh why bother! I'm too tired to explain as I am making dinner and getting ready for a trip to Dr. B tomorrow." So as I thought all of that other stuff on the inside, I just said, "Well have a nice night and I'll send your son home in a few minutes." And I am thankful daily that we're not dealing with something worse b/c we have some good days. But, I keep telling my mom that no one gets it until they live it.

 

 

Her friend probably had Lyme Disease and didn't know it. People can say the dumbest things. Its a real eye opener when you have a sick child.

[forjpj]

Sometimes I worry that when all this is over, I won't be able to relate to anyone ever again (unless of course you have a pandas child)!! Maybe we will all have to form our own pandas rehab facility!!

[philamom]

Sometimes I worry that when all this is over, I won't be able to relate to anyone ever again (unless of course you have a pandas child)!! Maybe we will all have to form our own pandas rehab facility!!

 

I so agree!!!!

[dcmom]

Forjpj

 

I totally agree. Prior to PANDAS I was really social.

 

I have lost a lot of interest in socializing outside of my family (parents and siblings). I didn't really clue my friends in on the day to day horror of pandas. I am not interesten in sympathy- but it is SO hard for others to understand, and to tiring to explain.

 

We are now moving to a new town, ugh, I just don't know if I have the enthusiasm or energy to put myself out there to make friends.

 

I, too, am so glad for this forum. It is nice to know others feel the same

[thereishope]

People think they have to say something because they don't understand and it makes them feel inferior. I've gotten the "well, I never heard of that" with the unspoken undertone of ...if I never heard of it, it must not exist.

[airial95]

Vickie is on to something. Many times when people discuss health matters they feel the need to say something - ANYTHING - that may be relevant to the conversation, even if it makes no sense whatsoever. When really, the one thing we all need to hear is "I'm sorry your son/daughter has so much trouble, if you ever need anything, even just an ear to bend, I'm here"

 

I've started to chalk it up to being one of those uncomfortable topics - like death - people feel compelled to say something, but it ususally isn't the right thing. I don't think they're trying to be idiots (okay - so some folks can't help that...) - they're just uncomfortable with the topic.