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Haven't been getting on much lately. It's been a bad time & I've also been SWAMPED with school work. I found out today that I still have my 4.00000 & that I'm 16th (out of 621) in my class. I had one of the top 95 PSAT scores in the district & the district is paying for me to attend a PSAT/NMSQT (National Merit Scholar Qualifying Test. But they're the same test.) prep course because they think I can make National Merit. I also made a poster over Medical Psychiatry (had to choose a health-related career) & my teacher is letting me present it on Rare Disease Day & talk about Lyme. :) She is one of the greatest teachers. I've never been absent in that class so I was a little concerned when I saw that I had an absence in there. When I asked her about it we started talking about all of the medical issues (she's an RN) & in the middle of the conversation she dug in her desk drawer, grabbed a journal, & gave it to me. She told me that whenever I was absent, all I had to do was journal. She said that the last thing I needed to be worried about was her class. One of the sweetest things a teacher's ever said to me. <3


Gave my Mom the names of all those doctors mentioned in the wellness check post that no one seemed to care about. She has yet to make appointments with any of them. The window to see Rao before the LLMD came & went. The nurse practitioner who gave me all of the referrals mentioned in that same post didn't have the name of a geneticist she trusted that was any closer than Houston (4/5 hour drive). My appointment was on a Friday, so she said she would call Monday to refer us to someone. I figured that much wouldn't even pan out, but come 9AM Monday it wasn't the nurse practitioner calling my Mom, it was the geneticist. She sat on the phone with my Mom for over half of an hour getting a family history. Granted, I'm not sure how accurate or detailed it was since most of the concerns are on my Dad's side, but oh well. The geneticist said that she wanted to start with my only brother, who is Autistic & mentally retarded. My Mom explained to her that he lived with my Dad & had a different mother (which, by the way, the doc said she could differentiate which parent any abnormalities came from) & that neither of them were all too fond of doctors. The doctor told my Mom that she was very interested in me, but that she had to start with my brother. I see my Dad on Sunday & I plan on asking him if he'd be willing to then. The doctor said she would only need to draw blood twice from my brother, so nothing too invasive or anything. I just thought it was interesting that a doctor called US, sat on the phone for almost an hour, didn't charge a thing, all based on an hour-or-so visit with that nurse & a poor excuse for a patient file (that ped. doesn't have the half of it.). Made me happy to see medical professionals who cared, but also scared me a bit because I want to know WHY she cares.


The sunny disposition of last week took a nosedive on Friday when one person came to my birthday celebration. Wanted to crawl in a hole & die. Cried for hours. I hate teenagers. I hate girls, I hate my "friends". I just hate everyone. Today, trying to motivate myself to get out of bed, I thought "It's Thursday! Which means tomorrow is Friday & you can sleep as much as you would like.". Then I immediately thought "Oh my God. It's Thursday. I see the LLMD & start treatment in just a week.". I hadn't even thought about it. I texted a friend of mine that I've known for eight years saying "Holy ####, it just dawned on me that I see that new doctor & start treatment in a week." She asked if that was a bad thing, I told her no & said that it was just scary. To which she responded "How? My Grandpa starts treatment next week & it's experimental. THAT'S scary." I suppose it doesn't sound as bad when you don't know her, but it hurt & made me cry again. She doesn't care about her Grandpa. In all seriousness, I've heard her talk about him twice before. He lives in Puerto Rico & she's met him a handful of times. She's not sad, she just wanted to undermine my feelings. I don't like not having anyone to talk to.


Got prescribed 30mg Adderall XR since insurance denied Nuvigil (imagine that). You won't cover the safe, completely non-addictive one...? Well here, let's see if you cover the one that hits the addiction center of God-only-knows-how-many college students every day. & it worked. Ugh. Glad to have SOMETHING (although I'll admit it doesn't work nearly as well. But we are at a low dosage so I still have hope), but just don't see how they make their decisions.


I'll edit this post to add a bit more later, but for now I have more mountains of homework to dive into. <3 you guys.

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It's seems you've been on quite the roller coaster ride! You talk about the doctor that actually wanted to help you and was interested. I always said I could undersatnd why docs don't want to take our kids on just for the challenge. I think most docs get comfortable where they are and lose that passion. I wish you nothing but the best, Emerson! Thanks for the update!

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Teen age girls can be awful...sorry about the huge disappointment that they are.


But, congrats on the awesome test scores and maintaining your GPA with all the medical stuff you have going on. You are truly an incredible young woman...


from Michigan

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So let's tally this up...

+ Top of your class

+ top in your district and free National Merit testing

+ lyme presentation and support of a great teacher

+ possible interest from geneticist

+ starting TREATMENT in a week - not just a doctor appt - but Treatment!

+ adderal that helps with narcolepsy symptoms - maybe not what you wanted but some help


- mom not on top of making doctors appts

- disappointing b'day not attended by people too blind to see how awesome you are

- forced to co-exist with teenage girls (afraid there is no cure for this except the passage of time)


Yes, being sixteen is not always sweet. Sometimes it downright stinks. I don't think many of us would go back to that age unless you paid us large sums of money (and even then it would be so we could remember having perky boobs).


So 6 pluses, 3 minuses. I think you have much to be proud of. Try not to sweat the lyme treatment. How much worse could you feel? And for my kids, it's made a huge difference in how they feel. Not every day is great, but there are a ton more good days and a lot fewer lousy days. Despite it's forgettable beginning, I think this year could be a great one for you. Have hope and keep us posted!

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Yay about the Lyme treatment!


I'm sorry your birthday stunk so much :(. I agree with all the moms, girls our age make seriously bad "friends." So let's enjoy the perky boobs while we've got 'em, and the heck with everything else.


Have you seen any of the videos from the "It Gets Better" campaign? I know they're targeted towards gay teens, but really listening to them, they could apply to anyone. It's all about hanging on through the high school years, which stink for everyone regardless--we've just got PANDAS etc. on top of it.


And congrats on your GPA and scores... seriously unbelievable, especially viewed in light of accomplishing them along with all this other stuff happening. Maybe you can use that great brain to help future kids like us :D


cyber-hugs! and happy sweet sixteen if I hadn't said so already!

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I agree with LLM...dwell on the 6 positives that you experienced. :) And you need to change your tagline/signature to read "Super 16 year old...." Still wishing you happiness and healing!!!


And some of us had to wait until our 20's to be perky...I was a late bloomer. ;)

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16 was tough for me too because I was sick. Let me tell you something, Dearie... those high school fair-weather friends, those will come and go. It feels HUGE now, but it's not in the long run. Your head is EXACTLY where it should be- GRADES. Those are going to serve you so well. Poo on the girls who didn't show.


You remind me so much of me, only I gave up on school and barely graduated. I started out strong, but my illness overtook my motivation and I was left a depressed shell of myself. I just want to grab you and hug you and cheer you on!!! High school is fleeting- enjoy what you can of it and toss the rest aside.


You're amazing. You inspire the ADULTS with children here. That is not a small thing. We see you struggle and make it- and come out on TOP. We see you fall and you pick yourself up and brush yourself off and you come out twice as strong! Be proud of who you are and the distance you have come. It takes strength to come here and be honest about what is going on and ask for help. It takes strength and motivation to keep begging adults for help when you know you need it. Those are EXHAUSTING and HUGE things. Things a child should not have to do. I know, I have lived that and I was not as sick as you are. It is frustrating and awful and you wish you could just be like any other perky boobed 16 yr old ;) but you feel 80 inside.


Keep pushing. You are going to rock this. You are going to get this treatment and kick PANDAS' and Lyme's butt from here to yonder and be an amazing adult and spokesperson for kids. These things that happen to us and we sit and pity ourselves and wonder "why me?" come full circle someday and we have this moment of enlightenment YEARS later and go, "Oh. Huh. That's why."

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Thanks LLM & the rest of you too. :)

Vickie ~ These past two months have been more up & down than ever... Seriously. Besides my birthday, of course. Which was very nice & gives me hope to look back on.

Emily ~ You wished me a happy birthday! Thank you though. & no, I have not seen that but I am going to check it out now. :D <3

SarhJane ~ Why don't I ever see you on here anymore? I normally take that as a good sign, just wondering. Know the rest of us are missin ya. Wear the necklace everyday. :D <3

PixiesMommy ~ I know why me. Because I can handle it. &, so I can help people like me later on. As helpful as optimism for the future is, it doesn't help now suck any less. I know teenage girls suck & highschool friends don't count for much, but feeling alone is still hard. At least, if nothing else, I've always got my cyberMoms. & my awesome dog, of course. :) Also, I'm making slow progress on the shirt, but it's looking really nice! Took a different route. I'll post photos of it Monday.


Today is a bad day. I've been more tired in the past week than I have in the past two or three years. It feels like the beginning of freshman year all over again. Sleeping eight hours at night... Sleeping through every class. Sleeping on the bus between classes... Sleeping when I get home... All while on 30mg of Adderall. After at least an hour & a half worth of napping during the day, I slept for twelve & a half hours last night. I made sure to stay up until midnight last night in an attempt to keep myself from sleeping too much. Instead, I just woke up at noon with no muscle tone to stand up or grab my phone. Ugh. :(

I've also been super sensitive to light lately? I've always read about this as a Lyme symptom but I've never experienced it before. After being overjoyed with having REAL eyelashes, I just ended up plucking them all out again & had to go back to the fake ones. False eyelashes don't like water. I was sitting outside for lunch one day & my eyes started hurting really, really bad. It was only when my friend Andrew walked up & asked me what was wrong that I realized my face was COVERED in mascara from my eyes watering so much. It looked like I had been sobbing. Thinking the eyelashes, which were ruined, might have been the culprit, I stopped wearing them. But it happened two more times this week, once even while just sitting in a classroom with a window. :/ Anyone have experience with this?

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Wow Emerson! Congrats on the amazing grades and school work! I'm also pretty excited to see what the geneticist comes up with. And, I bet you'll feel a lot better once you are treated for Lyme...you are definitely going in the right direction.


PS. I'm looking forward to the pics you are going to post. ;)

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I've also been super sensitive to light lately? I've always read about this as a Lyme symptom but I've never experienced it before.


Hi, EA. This may well be a Lyme symptom, but it's also a common PANDAS symptom (and SC too, per the SC boards). This is one of the symptoms that 1st plagued our ds and still lingers even after OCD and tics have resolved. I think any disorder that affects the brain can cause sensory issues. Our ds is allowed to wear sunglasses in his high school as an accommodation. More comfortable... And it makes him look cool and mysterious! Maybe you could arrange for this as well?


Keep up the awesome academics. Counting on you to rescue the PANDAS/PITAND kids of the future!!!

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Emerson, you are so amazing. I know, I have said that before, but you truly are so many years ahead of your peers in maturity. No, that does not help feeling alone right now, which is always a painful and lonely situation. I'm sorry. :( Want us to talk some sense into the other kids? ;) Hang in there kiddo... you're going to get through this and thrive!


I can hardly wait to see the shirt... :D


Sending hugs and just one more comment about how great it is that you stand your ground and are true to yourself, even in the face of teen girl peers being... well, teen girl peers. ♥

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