Just a little update.

[EmersonAilidh]

First & foremost... We got a LLMD appointment!!! It's on March 5th. I figure after five years of waiting another two & a half months won't kill me. Thank you oh so very much, Linda. Also, is it "a LLMD" or "an LLMD"? That's always confused me. Oh well.

 

Waiting for the callback from the sleep doctor, but we're going up to the hospital for an EKG today so we're just going to get the results ourselves no matter what. I'm having surgery to remove the ranula on Tuesday, & the EKG is just a pre-op one since I had some Long QT issues that we're never really fully looked into in 2006. Cross your fingers that for once everything is just totally normal!!! Ugh. I don't know if I've mentioned this on here or not, but I went onto the Narcolepsy Network for advice after the disaster MSLT & found five members on there (in my first visit) that had gotten Narcolepsy from Lyme. Just thought that was weird! No one with P.A.N.D.A.S. though, although they do talk about the Stanford Strep article. I feel like a messenger, hahah.

 

After the surgery we have an appointment with the Dallas neurologist on Jan 5th. Don't really know how I feel about her since we've only seen her once, but all I know is that the medication (Nadolol for headaches) is doing a whole lot of nothing. Oh well. Probably going to make an appointment with Dr. Rao in Plano to test for immune deficincies (sp?) before the LLMD. Figured we'd just get that out of the way. I think it was Trudy who told me to do that... So thank you!

 

Breaks from school mean one thing above all else for me; SLEEP. When I don't have to wake up for school, all bets are off. Slept ten hours Saturday night & took two two hour naps after that. Slept twelve hours last night & I'm already ready for a nap after having been awake for two hours. Two days I started crying because we had no soymilk & I was just sitting there thinking "What is WRONG today?!". Then I had some bad motor tics & I knew something was up. So of course, my Mom goes "My throat hurts.." but won't go to the doctor. Ugh. She's been doing a lot better about most things. I've already gotten two upper respiratory infections this winter, pretty sure I'm getting/have strep now. Who knows, with my asymptomatic history I could have been the one who gave it to her. I wish she would just go to the freaking doctor though!!! Oh my God. Whatever. -__-

Counselor said we can start on a 504 even with just a Narcolepsy diagnosis. So hopefully that pans out. Can't remember if I mentioned that the doctor who did the ART won't even put into writing that he has the tests, so no Lyme 504 for me as of yet. My Mom owes the psychologist who diagnosed P.A.N.D.A.S. some money & won't ask her for a letter of documentation. Waiting for the LLMD as far as all of that goes.

I have been getting out more lately, even if for no other reason than I'm forcing myself. Better than not leaving at all, I suppose. I've hung out with friends two of the past three days. Much better than not leaving the house for six weeks. Granted, these are friends that have been around for a while & know what's up. I don't know when I'll be ready to be in big social situations again. I've been playing the piano again (when my motor tics get bad, the minor ones in my hand go away for the most part), & I asked for a violin for Christmas. I used to play, but I stopped when the twitches came, then my violin broke & I just never got another one. I've continued writing, am currently reading Sybil, & might be getting Osler's Web & a DSM-IV for Christmas. I love medical books. I did even before I really got interested in researching P.A.N.D.A.S. & all that. Being able to read is also a huge deal for me. When my Narcoleptic symptoms started, I didn't read a book for about two years. I'm on my third one this year. I'm pretty proud. I've still got my 4.0000. I suppose one upside to P.A.N.D.A.S./Lyme is not exactly having too many social opportunities to distract you from school, hah. I'm especially enjoying my Psychology class. I have an extremely enthusiastic teacher. You can tell he's actually interested in what he's teaching. It's so much easier to enjoy a class when you can tell that the teacher enjoys it, too. I get to start dual-enrollment at the local community college next year. I'll be finishing my freshman year of college in high school. Then it's off to TCU, then UT Southwestern for my MD. Then y'all can really call me Dr. E.

I'm excited for all of the opportunities I have. OCD has been bad, but Anxiety's been good (well. As good as anxiety can get, haha. Morning anxiety attacks are bad, though.) I will do my best to log on more. I just wanted to let you guys know that I haven't disappeared, haha. I hope everyone has a very merry Christmas. <3

[emmalily]

Sounds like you've got a good plan going with all those doctors appointments lined up! Moving forward!

 

Hope your EKG worked out alright and that you're enjoying sleeping in on break

[EmersonAilidh]

EmilyEmilyEmily. My favorite P.A.N.D.A.S. sister.

EKG went perfectly fine! Thank God. Hahaha. Surgery tomorrow at 3:15.

[emmalily]

EmilyEmilyEmily. My favorite P.A.N.D.A.S. sister.

EKG went perfectly fine! Thank God. Hahaha. Surgery tomorrow at 3:15.

 

 

Ah, good about the EKG! I'll be thinking about you at 3:15 (or whatever the time difference equivalent is, I'll figure that out haha). Hope it goes well

[emmalily]

How was the surgery?

[MichaelTampa]

Glad to see things are moving along for you. Hopefully the surgery went okay.

 

Sounds like you'll be a great doctor, we sure could use more doctors that have lived through the crazy symptoms, so they can be more helpful to us, and just plain nicer as well!

[EmersonAilidh]

All went well with the surgery! Hurts like #### but I've got pain pills. Had a bad reaction to the anesthesia, but that was to be expected. Didn't get any prophylactic antibiotics though!!! Agh. I'm gonna ask for some on my followup since I'm so prone to infection. Thank you for asking, Emily!

 

Thank you Michael! I'm glad I finally decided to be a doctor. A psychiatrist, specifically. <3

[philamom]

Glad to hear (read) you weathered your surgery! Take care of yourself!! I'm suprised (well not really) they didn't give you proph abx if you are prone to infection. Give them a call.

I'm also so glad to hear things are moving forward--Good Luck!

[JuliaFaith]

Good healing thoughts going your way!