Oh, the crazy adventures of a P.A.N.D.A.S. kid...

[EmersonAilidh]

Hopefully you can hear the sarcasm dripping off that title, haha. Third Friday night in a row spent with me, myself, & I. Can you imagine the thrills? Friends suck with P.A.N.D.A.S. I mean, I have them, but they all suck. Just being honest. I think everyone sucks to some degree. Been down all day, seeing the bad in everyone & myself. Day three of a monstrous headache that just won't peak & break. Hip popped so loud in class today (while sitting down, doing nothing) that all the kids freaked out trying to figure out what it was. Has Mom made an appointment with the physician to talk about co/secondary Lyme infection testing? No, of course not. Has she opened Cure Unknown? No. She did read one of two articles that I printed out for her, though. I suppose any progress is still progress.

 

The thing is just that no one thinks like I do. Like we do, I suppose, although I doubt any of us really think like eachother either. Having friends are one of the few "normal" things we can do (I use the term "can" loosely here, because obviously I'm not doing too well), so it's worse than just spending a night alone when I do. It feels like losing that little bit of normalcy I've been whiteknuckling for all these years. No one understands, but after a while you stop expecting people to & so you settle for friends that at least keep you smiling. Mine aren't too good at that. It's not easy being weird.. The girl that can't eat pizza, can't sit through or pay attention to a whole movie, can't throw herself into big social situations like parties. What am I supposed to say when people invite me to the local lake? "No, sorry, can't go today. Too terrified of germs & parasites." *click* On good days I CAN do big social pow-wows. I can light up a room & befriend anyone when I'm myself, which is rarer than you could imagine. But on bad days, which are really just normal days, there's no use embarassing myself trying. It's not like I get invited to anything anymore, but if I did I'd find some reason to say no. Sometimes I'd much rather feel like this on my own than surrounded by people who don't get it, but sometimes I wonder if a "shoulder to cry on" would be nice. & then I remember that I'd never put my head on anyone's shoulder because I don't touch people, & then I remember why I don't have one to cry on in the first place. I lost a friend this week. We've been friends for about seven years, me & that girl. As long as I haven't eaten meat. She told me she was tired of me complaining about "my problems" & offering no solace when she was down. Empathy is not my strength. I'm SORRY that I can't understand what it's like to be upset about so-&-so commenting your boyfriend's picture on FaceBook the same day that so-&-so called your shirt ugly. I'm sure you Moms understand that. I've grown up being worried about my next appointment. How much blood they're drawing this time. By the time I was twelve my main worry was timing my fourteen pills a day right. Making sure I made it to neurobiofeedback on time. Staying up at night researching diseases because no one else was. I'm SORRY that I have absolutely no idea what to say to you when you come to me upset, because all I've ever wanted was to be bothered by the normal teenage things like you are. When my friends are good, they're very very good, & I'd never deny them that much. Every now & then we hang out & laugh & everything is dandy. But more often than not I'm texting them & not getting replies. Getting told they can't hangout. Seeing photos of them on FaceBook at parties on nights they said they couldn't hangout. Reading & hearing about all of the fun stuff they do that I wasn't invited to. I mean, I know I can't & I probably wouldn't have gone, but it would be nice to know someone thought to invite you. Which, I know they don't, but I guess what I'm trying to say is that I'd like the opportunity to decline. That sounds stupid, but whatever.

 

I got a 20% off coupon for a local little yogurt bar thingie. Like Pinkberry, only a knockoff. I invited three people. Two said they would go, one had a date (Remember those things?? Hahah.). The other two never texted me. Well, they texted me to tell me they had gone to do other stuff with eachother & some other people. I didn't get invited, & I didn't go to the yogurt place either because I couldn't bear going alone. It just makes me sad. Sorry for the rant. Bad, bad day.

 

For now, I'll be spending Friday night with Wikipedia, Discovery Health Channel, & my CyberMoms. <3

[Mary M]

Emerson...I wish so much for you and you will make it through this...you have before. Your amazing capacity to see who you are, know what you need, and seek out what you want is such a testament to who you truly are, especially underneath all the infection-triggered garbage that takes over sometimes. Your ability to verbalize your "crazy adventures" as you put it is such a benefit for all of us as we watch our children suffer through the same things you've described. As if being a teenager isn't rough enough...then you pile on the PANDAS and things really get challenging. I'm so glad you write about it on this forum...

cyber hugs,

from one of your cyber moms!

Mary

from Michigan

[Priscilla]

Oh Emerson, I am so sorry you are down. For what its worth, you spend alot of your older years wondering why you did all the thing you did as a teen, so maybe you are sparing yourself some regret. You are amazing. I can see things that my dd 8 says that show her wisdome beyond her years, I think that PANDAS makes children tap into other areas of their brain, so embrace your gift. Creativity flows through all of your writings, this is true of my dd. She is SO CREATIVE and IMAGINITVE. Maybe the right brain compensates here, I don't know, but I am encouraging her to embrace it as a gift, and I encourage you to do the same. Have you ever thought about being a writer?? Are you artistic?? Many artistic teens feel different from the mainstream. Maybe you would make better friends in a creative community. You have literary talent, really, go for it. I can only see a small picture of you, but I can't help visualizing you as Selena Gomez. My dd would be in awe of a girl like you. Don't be too hard on yourself, God has chosen you for something that others can't fill, that is why you are different. PM me anytime if you need to chat.

[Priscilla]

Oh Emerson, I am so sorry you are down. For what its worth, you spend alot of your older years wondering why you did all the thing you did as a teen, so maybe you are sparing yourself some regret. You are amazing. I can see things that my dd 8 says that show her wisdome beyond her years, I think that PANDAS makes children tap into other areas of their brain, so embrace your gift. Creativity flows through all of your writings, this is true of my dd. She is SO CREATIVE and IMAGINITVE. Maybe the right brain compensates here, I don't know, but I am encouraging her to embrace it as a gift, and I encourage you to do the same. Have you ever thought about being a writer?? Are you artistic?? Many artistic teens feel different from the mainstream. Maybe you would make better friends in a creative community. You have literary talent, really, go for it. I can only see a small picture of you, but I can't help visualizing you as Selena Gomez. My dd would be in awe of a girl like you. Don't be too hard on yourself, God has chosen you for something that others can't fill, that is why you are different. PM me anytime if you need to chat.

sorry my spelling sucks, at work, gotta go

[EAMom]

Hey, I'd go to Pinkberry with you!

[thereishope]

Emerson, it's similar from the parent point of view. Friends who occassionally ask how things are going, but don't really want to know. Having people who complain about their problems like where they should go on vacation or having too many social activities lined up that they are just so busy. Then you have others who treat your child/talk about them like they are an object with "the PANDAS". I don't really have advice for you except to say the corny ole phrase that "it will make you stronger". But, you know what, it's the truth. It does. But then, I sit there on some days and ask God why I have to be so darn strong! It'll pan out. Believe it. It may take a while and there will be ups and downs, but it will get better. Then you will look back and ask yourself how the heck did you ever do it and realize what an amazing, strong individual you have become.

[tired mom]

First of all..Big Hug Second thing,for what it's worth,the friends you have in high school most likely won't be your friends in a couple years. The friends I have now that are closest to my heart were not part of my life in high school. Time heals,and life goes on. You are smart enough to know that what your dealing with is far beyond the all the drama of high school girls. It is Ok to feel BLAH!! you have every right to. I know you will bounce back real soon!! Keep fighting kid..YOU'RE WORTH IT...

[SarahJane]

I hope that this post finds you feeling better on Saturday morning. {{{{{HUGS}}}}}

 

It sucks that you have to go thru this, but you are a very self-aware young lady who can at least recognize that all this sucks. Believe me, not everyone is so self-aware, & that's very likely part of the disconnect with your friends. That doesn't make it feel better when you're alone on a Fri night. And believe me I know that feeling. I was dateless in high school, friends did stuff without me, blah blah blah. I didn't date much in college either until I met my now husband...on a blind date...seriously! I'm sure there were many girls & boys sitting home last night...that doesn't lessen the fact that you were...just sayin' tho'.

 

I wonder what you will do in your life with all this amazing knowledge you have and on your quest for learning. I for one think it will be something GREAT! The world is definitely better for having YOU in it!

 

P.S. I checked out The Encyclopedia of Infectious Diseases from the library last week & was so excited when I found it on the shelf that I got all fluttery inside.

[EmersonAilidh]

Mary M ~ I always find it funny when you guys talk about how I verbalize what none of your kids can to you because I know I sure don't say any of this to MY Mom. She's just as in the dark (okay, let's be honest here, a whole lot deeper in the dark...) than any of y'all with your kids. I think it's just easier to talk/vent like that when it's not your parent, ya know?

 

Priscilla ~ I am grateful for being different, &, not to be haughty, but for being bright as well. If nothing else all of this has taught me what's REALLY important & given me a good perspective on everything, better than most girls my age have. I know it will pay off in the long run, but on nights like these past two it's hard to think into the future when the present, well, sucks. Today is a good day though.

 

EAMom ~ I'd teleport you some PinkBerry if I could. I wish there were more people in DFW. I can really only think of three besides myself. D:

 

Vickie ~ I have asked myself that exact same question! Everytime I hear "What doesn't kill you makes you stronger" I just think "Alright... Strong enough now. Don't really want or need to be any stronger. Got more than my fair share. Go ahead & give some to someone else some strength today.." At least I have the "catty teenager" excuse. People y'all's age should know better. If it helps, there's a fifteen year old in Texas who thinks you're pretty great.

 

Tired Mom ~ Bounceback achieved. Reminds me of a quote I love. "You won't get better until you're worse." I think everyone has days like that, it's just not helped by a heap of psychiatric issues & a lack of friends. But, like I said, I have cybermoms. All of my friends' (sounds weird saying that on this discussion but I DO have some, believe it or not) computers have met Latitudes.org.

 

SarahJane ~ I like you. I'm glad you joined this forum & I hope you stick around. I know that being a loner can lead to some great thinking or whatever, but that's no consolation when you're eating lunch alone at school or spending Friday night with a DSM-IV. Every now & then I have good days like today (gfree pasta at Olive Garden? Yesplease. Only a few hours left. ) like today & I realize that in ten years it won't matter who I sat with at lunch or who I spent my Friday nights with. I understand & have dealt with things girls my age could never dream of, & in the end it's true that the meek will inherit the world. Thank you!!!

[sweet pea]

Emerson,

I am new to the whole PANDAS thing. My almost 3 year old daughter was just diagnosed about 3 weeks ago. It has been so incredibly difficult and I am not handling it all very well. But, I wanted to say that I am grateful for stumbling upon this forum. I have read some of your posts and they have really touched my heart. I am truly impressed by your honesty and by your ability to express yourself through your writing. (Maybe it is also partly because I have a nineteen year old son and you provide a little window into the life and mind of a teenager). Anyway, I hope your week gets better! You have helped to give me a little bit of strength today. So, thanks.