27 December 2009

December Update

Hey all,

Something's been...off. I don't know. I haven't had the motivation to post, even though I've had plenty to post about. Guess I'm just having a bit of a harder time pulling myself out of this funk.

Anyways, we'll do this step by step, like usual.

  • I've chanced meds from Daytrana to Vyvanse. It's an extended release form of Adderall. It's working wonders! I'm able to stay awake during the day, and actually feel awake. The only issues are me not being able to sleep as well, but we'll work on that. I did notice that while on the Vyvanse, because I'm not hungry at all, I've gotten a bit shaky. I just need to keep an eye on what I'm putting in my body, and if it's only a little bit, make sure it's nutritious.
  • Still nothing from Stanford about the LP. I hope that comes soon.
  • I had to fill out a Living Will and a Medical Power of Attorney yesterday. That was scary, mostly just because I HAD to do one before I turn 18.
  • Also going well. I continued to get out of my chair at lunch, and haven't had any issues.
  • My grades ARE improving, even though the letter grades haven't changed, my percentages have gone up, which is good.
  • I absolutely love my para. She's wonderful. She lets me do my own work, helps if I ask, and keeps me on task, which is something I did need help with. I'm so glad she's going to be working with me all year.
  • I'm turning 18 soon!! on the 6th. I'm so happy/nervous. I'll be a legal adult! OMG.
  • I've been getting out with friends, and doing things. I'm so happy I'm doing things again, it's making me feel more normal lol.
  • I have plans to do things with high school friends. It's a welcome change!
She's doing so well!!! She's adjusted beautifully here. I can't make a move off the couch/chair/bed without her following me. She's still been alerting to my episodes (if they're stress or heat based) but since the meds are working, she's not had as much opportunity to show her stuff.

We've taken her out now many times with me in my chair. After finding the right size leash (3ft) she's able to walk with me without a problem. We still need to work on turning, and I don't think she was taken to pet stores much, as she's still nervous in them, but we're working on it.

Next Friday we're taken her to get groomed and to meet back up with her previous owner for two reasons. So she can see how Tess is doing, and so she can go over all commands Tess knows and make sure I'm doing them correctly. I'm really the one that needs to learn, not Tess.

We won't be able to get her Public Access Tested until May, so she won't be able to come to school with me until next year, so this next year will be spent getting her (and me!) trained correctly.

So yeah. That's most of what has happened in December. I've gotten to go out with friends. I have been out of my chair at school, and been fine. And I have Tessie!!


26 November 2009

Long overdue

This post has been long overdue. And, a LOT has happened since my last post.


-My meds were updated to 20mg from 15mg. I was having such a hard time staying awake in school, and at home. I was getting about 14 hours of sleep a day, just not at the right times.

-I've recovered from the LP issues. The back strain and headache went away about a week after the LP. I'm doing much better now!

-We're still waiting for the results from the LP, hopefully those will come soon.


-I hit a rough patch in my grades for a while. They dropped to 3 E's and 3 C's, which is NOT normal, because of the sleep problems at school. I'm finally doing better, and they've picked up to 3 A's and 3 C's.

-I have my new para. She's absolutely wonderful.

-I've been able to get out of my chair during lunch each day for the last 3 days. It's very helpful to get that exercise in.

I have a doggy!!! Her name is Tessie, she's 40 lbs, and 18 inches tall. For the last 3 months we've been communicating with a local Australian Shepard breeder to get a puppy. We were planning on training this puppy into a service dog.
When we contacted them, the breeder told us that she had a dog available that was 2 years old, trained, and able to pick things up. We looked into this dog, and on Sunday we went and picked her up! We're doing a 2 week trial, but I don't think there is anything that could make her not work! She's so well behaved, and doing everything we needed/wanted.

So yeah. That's SOME of the stuff that's been going on.

Oh! Saturday we were able to go to Trans-Siberian Orchestra thanks to Starlight Children's Foundation. We had a BLAST! Except, I fell asleep. At the concert. In the middle of a number. If you've ever been or heard about them, you'd know how hard that is. Yet, I was tired.


Oh So Excited for Tessie!!

Bye for now,

06 November 2009

Headache Headache go away,

Come again...never.


Still have the headache. I've been getting as much bed rest as possible, but after a few hours of laying down, my back starts cramping so I have to get up. I sit for about 30 minutes with a heating pad on my back, then lay back down.

Except right now, because of dinner.

I don't know what we'll do if it stays like this. I mean, I know what is usually done, but =(

I have an I.E.P. meeting Monday. I hope that goes well, I'm sure it will.

I'm off to try oysters for the first time ever!


04 November 2009

I should change my name

I was thinking something like...If-something-can-go-wrong/awry-it-will.


SO I had my LP with the aid of fluoroscopy and sedation yesterday. Propofol was used again.

I don't know if I mentioned this at the time when I swallowed the needle last December, but. Propofol and I? We don't get along.

Last time, as the drug was taking effect I became the sleepy, girly version of the Hulk. I had to be restrained and given a higher dose, so they essentially knocked me out instead of the conscious sedation they were going for. It also took a while for me to wake up, probably due to the fact that they had given me a larger dose and because I have Narcolepsy.

Anyhoo, back to yesterday.

So, we get to the hospital at about 2, get checked in, and get taken back to a room.
The nurses were completely awesome, very nice, and put me and my parents at ease. It took a bit to get all the technical stuff figured out, but after all that, I got changed, got on the bed, and we got started. Per Stanford's instructions, they had to draw 60cc's of blood. In case you don't know, that's equivalent to 2 fluid ounces of blood, which is...A LOT.

Then they get everything explained, all the "You could die from this, we don't expect any complications, but we have to tell you" speeches. I get moved down to the imaging room, get positioned on the bed how I needed to be, and they began the procedure.

I was given the Propofol, and apparently had no issues going under this time. They were able to draw the fluid they needed, and my back looks good, no massive bruising or anything.

As I was waking up, however, there were issues.

I became combative, had to be restrained by a lot of people, then straps.
During that time, I stopped breathing for a few minutes. Mom was in the room for that =(
I also seriously screwed up my back.

BUT, and here's the twist, we didn't know I'd hurt my back until about 30 min after I actually was completely awake. I tried standing up to put my jeans on, and nearly collapsed. My entire lower back/pelvic area had shooting pains all through it.

So, then I was taken from the radiology suite to the ER, because they needed to be sure that there were no issues with my spinal cord. It's only a muscle issue though. So I was at the hospital until 8:30 this time...

We also THOUGHT that I had been lucky and escaped a post-LP headache, but I wasn't that lucky. So I'm home early from school today, (Thursday) and finishing this post. I'm trying to get some fluids in my body before I go back to my cave and lay flat lol.

Ahhh. So, these are the issues I've run into. Plus more at school, which I'm not even in the mood to talk about right now.

I'm open to suggestions on how to cope!!


22 October 2009

Get ready for a long one!

Okay folks, get settled.

I have been to Stanford and back, in 3 days!

Well, it was an interesting, long, cramped few days.

But, now for the important news!

We met with Dr. Mignot on Wednesday. The first hour and a half was spent giving my history, and filling in or clarifying information my faxed records had provided. After that, the doctor came in. He didn't tell us what we expected to hear, although we should probably expect that now.

He basically said this. Given the information, he was almost 90% sure my LP would come back with normal levels of Hypocretin. He said that some certain things just didn't fit. And, he said the dreaded words. Conversion Disorder. BUT, not in the same way.

The pieces of info that don't fit are the fact that I hurt myself when I fall. Not that I hurt myself, but that I get hurt, that I don't protect myself. Both people with Narcolepsy and people with CD usually try breaking their fall, and I never have been able to. He also said that even with both sleep studies having things go wonky, they should show a sleep architecture of classic Narcolepsy.

But, because I do have the symptoms and the HLA markers, he wanted the LP done. So, down to the procedure room we went.

Now, I'm not exactly a skinny girl. It's well known that LP's are harder on overweight people. So, we expected a bit of difficulty.

The doc performing the LP started numbing the area after cleaning it. I've had problems in the past with accepting local anesthetics, but we always assumed it was due to swelling in the area being anesthetized. We found out that that's not the case. It took a while for the numbing mediation to even work a bit, but I couldn't feel my skin, so the doc started inserting the needle.

I felt everything. Not just pressure, like you're supposed to, but everything. The stress of the pain and having to curl so tightly made me have an attack. When I came back around, a doctor was holding my head and shoulders still. They had taken the first needle out, because it wasn't long enough. The second one they used was longer, and they were able to get between the bones, but not into the space to get the fluid. They decided to stop there, because it was hurting me so much and they couldn't get fluid.

They said that because the local didn't work, and they had a hard time getting into the space to get fluid, I'll need to have a lumber puncture done under sedation with the help of fluoroscopy. It's like a real time x-ray, and will show doctors exactly where to put the needle. Plus, because I'll be sedated, even if the local doesn't work, I won't feel it.

Because Stanford doesn't run the samples every day anyways, as long as we get the procedure done soon and the samples shipped back down, as far as solid proof, we're not set back any.

But, it was disappointing. It was hard to drive all the way down there, for them to say the same things we've heard here, and not even be able to have the spinal done.

Anyways, I'm trying to stay positive. Doctor Mignot said that even if the hypocretin level is normal, he still feels it's worth trying to treat the symptoms. He said three things.

Either it's purely Conversion Disorder, which he has seen before. He said even if it is CD, he would try to treat the symptoms. It's helped past patients and even me, if that's the case.

Second, it's possible that I have a combination of both. Much like people with Epilepsy, people with Narcolepsy/Cataplexy can have psychogenic symptoms, meaning that they aren't faking, but it isn't of a physical cause.

Third, it could be a mutation. He honestly said that. That we don't know enough about the human body to say something is or isn't. That maybe, tied in with my other physical conditions, this is some sort of mutation of the syndrome, and we just don't know.

So yeah. I know this is a little (okay, maybe a lot) jumbled. I'm sleeepy.

But, that's what happened at Stanford. I'll post tomorrow of the rest of our trip down to CA, including how we celebrated my parent's 23 wedding anniversary on the road!


14 October 2009

Ugg... =X

Today I had attacks at school. No like...falling and hurting myself, but a lot of floppiness was going on.

I didn't use the bathroom until lunchtime, then I saw that my patch had come off, which explained a lot. Mom ended up bringing me a new patch so. But even still, I missed part of first, all of second, and part of fourth.

Eh. I got to see my PT today, which was good. I missed my appointment with Kris last week, so it was good I got some time in with SOMEONE before Stanford. =D

I'm working with my teachers to get printouts of what I'm actually missing. It's encouraging to hear that either I'm NOT missing as much as I think I am, or that the teacher is just willing to really, really work with me.

So yeah. I'm off to go shower and do some homework and go sleepy-bye.


13 October 2009

Good Day

I had a good day today. I didn't nap at lunch.....still a bit bed shy =P

But I made it through five periods without falling totally asleep. I dozed some in first, but other than that I was good. Between fifth period and sixth period I went down to the nurse's office to go potty. When I was washing my hands, I had an attack. It wasn't out terribly long, but I was really cold and sore when I woke up. Because my neck snapped forward when I went out, my head started hurting.

Anyways, good day for the most part.

Ermm....Just trying to get homework done and together for tests. I have, within the next week, a test in Algebra 2, a test in Medical Careers, a test in Biology, and a vocab test in Sophomore English. Right now in Junior English and U.S. History we're just watching videos.

Yup. I cleaned my room tonight, straightened and organized everything to get ready for Stanford. I'd prefer coming home to a clean room, so it's one less thing to worry about. And I've already planned what I'll be bringing as far as clothes go...and I just earned my brother's DS so I can play that in the car.

Okay. It's bedtime now.


12 October 2009

NOT a good Monday

So I had an okay morning. It was actually fun.

And I took a nap at lunch. Which was also fun.

Except at the end, because I fell off the bed as I was rolling over onto my back. And, as my head has been telling me, it was the first to hit the ground. It's got a pretty good sized purple goose egg on the back.

And, I had to be taken to the ER to get checked out. In an ambulance. During lunch time. The trip through the courtyard on a gurney strapped to a backboard in a C-collar was....fun. It's always comforting to hear kids laughing at you. And no, I didn't assume this....the laughing shortly stopped after a boy said to a girl "Stop laughing, that's not funny, she could be hurt!"

Ya know.

Anyways, luckily I only missed 3 periods. And I'll be back in school tomorrow.

Okay now. I'll be back tomorrow to tell you how my day went =)


11 October 2009

I just want to SLEEP!

I had an episode of automatic behavior (fugue state) last night. I don't know what time it happened at. All I know is that around 2:30 in the morning, I woke up in the park and don't know how I got there. I was freezing cold and my knees were badly bruised.

I didn't have my phone on me, so I walked up to the fire station and knocked on the door. They had me come in, checked me out, and called my parents. I was having a really hard time staying awake, but at least I wasn't floppy much. Dad came and got me, and the firefighters helped me into my chair then into the truck.

Once we got home, Dad helped me into the house. Then bed. Mom helped me drink some warm tea, but it was so hot (to me) that I couldn't drink much. Warm tea was burning my tongue.

Woke up this morning sore, but safe.

We found out I went out my window. The screw in it was removed, but we don't know when it was removed. Dad says it looks like it's been gone a while. *sigh*

If we could just get me to sleep well at night, maybe it would fix this.

Realize, I don't just have automatic behavior that ends with 911. Sometimes I'll start homework without 'being there' and it turns out horribly. Sometimes, I'll just get up, leave my room, walk into another room in the house, and 'wake up' not knowing how or why I'm in that room.

But, it's the 911 episodes that make it here.

Yeah. Anyways, I'm going to go do some dishes then go take another nap. I MAY be baking cookies and bringing them to the firefighters for waking them up in the morning. I realize it's their job to help me and blah blah blah, but they still need sleep. And they were super kind.

SO yeah.


09 October 2009

Hi guys

I've been taking advantage of the extra time off and sleeeeeping. =P

Wednesday I had my meeting with mom, my counselor, and myself. We decided, ultimately, to leave my schedule alone until after Stanford. I've been talking to my teachers about getting caught up, and while I'm not slacking off by any means, I'm not doing much except keeping up with the current assignments. They all pretty much said we'd figure it out after Stanford.

I was also told to stop being embarrassed about falling asleep in class. As long as I am doing my best, and not just like, purposefully laying my head down without doing anything, not to worry about it. My counselor said my teachers *should* understand why it's happening, and that if they have problems with it to have them talk to her. I <3 her =P


Tomorrow is no patch day, so I'll be sleeping in.




06 October 2009

Oh, how lucky am I

I found out the reason my sister got her panties in a twist today.Not because she couldn't do something.

No no, it's because my siblings decided I didn't try hard enough today.

You know, it would be one thing for me to wake up, walk out of my room and go "You know what guys? I've decided today I'm not going to go to school. I don't care what you have planned or how it effects your life. I just want to stay in bed and be lazy."

Except that's not what happened. And yes, I woke up at 10 and seemed okay. Never mind I was still exhausted. I don't care what you saw, there was no way I was going to be able to make it through my classes and not fall asleep or have attacks. You have no room to judge whether or not I'm 'trying' hard enough. You have no idea what it's like to sleep for 10 hours, wake up, and feel MORE tired than when you went to bed, if that's possible.

I'm sick and tired of trying to defend myself against something that is only so much in my control. I don't know what to say. I don't know how to react when someones comes out with some sarcastic remark because they're angry at me.

I need help. Soon. I know that it's only a few weeks until we go to Stanford, and hopefully we'll get some answers for better medication to treat the symptoms. But that doesn't mean that the comments will stop, because they KNOW it's the best way to upset me. I just want it to stop.


Great day for me. Still having problems staying awake so I stayed home today. Scratch that. I tried school this morning, but didn't make it out of the car. So anyways, for some reason, I've incurred the wrath of my older sister. No doubt she wanted to go to the mall/just out with friends but can't now, which sucks. I understand that.

However. If she makes one more comment about how lazy I am because I'm spending all day in bed, or how lazy I am because I'm "skipping" school, there's going to be some words said.

She's the one who gets up at 10 in the morning and goes to hang out with friends. She doesn't have a job, and she's not in school. No, she hasn't finished high school yet. She's supposed to be doing online, but she's putting it off. So she needs to keep her mouth closed.

Sorry. Rant done now.


05 October 2009

Funky day

Today was....weird. I had to come home early because I was having a lot of attacks/just falling asleep. I fell asleep on the bus to school, then slept in the nurse's office until school started. I was in 1st and 2nd, but not actually there. Then in second I needed to use the bathroom, and had a mini attack in there. All in all just a really rough morning.

Dad came and got me and brought me home, and I went straight to bed. This was at like....10:30. I didn't wake up until 5:30ish. And this is after sleeping on and off all day Sunday and Saturday, plus getting up late.

I don't know. I'm still exhausted...it's like my meds are doing absolutely nothing for me at this point. And I feel horrible because I'm still missing school even if I'm there.

But. We're just hanging in. =(

Bye for now, back to bed for me.


03 October 2009

Hey guys

So... busy week.

Um, school-wise, I'm sinking. Major. BUT, I'm in the process of working it out. Trying to find the right combination of naps, classes, and work schedules is hard. I've proposed a solution to my counselor, and we'll see what gets worked out. Mom is coming on Wednesday to talk about it.

Health-wise, I'm still doing okay. Aside from that scary attack on Tuesday and the fall-out, I've been failing at keeping myself awake in school.

We thought it possible I'd broken my hand on Tuesday. At first it had just hurt badly, but I had hit it pretty hard. Then it started swelling and bruising, became hard to move. So I went and got it x-rayed, and good news! No broken bones, just a BAD bruise.

As far as school goes though, I'm really struggling. I've been falling asleep in class, which is so hard for me. I've never, even since I started having symptoms, had this much trouble staying awake in school. And even if I don't fall asleep, I'll space out and not be able to force myself to re-focus on the task at hand. Working in groups helps, but my classes that are more individual cause problems.

So. Things are hard right now, and we're really just trying to keep our heads above water until Stanford. Only 18 more days until my appointment!

Bye for now


29 September 2009

Down I go

Today, this morning actually, I had an attack while walking down the stairs. I hit my hand pretty hard, and twisted my back. I'm in a bit of pain right now =P


And I know I haven't posted in a while, nearly a week this time. I just haven't had the motivation or energy. I'm still getting caught up from missing 9 days recently.

Anyways, I've found out that I won't need to go off my medication for Stanford, because they aren't doing a sleep study. I just have to have the lumbar puncture done.

We'll be down there for like...3 days? Maybe a few more.

So yeah.


23 September 2009

K, so mayyyybe I did kiss a pig

Actually, I didn't. But, I probably put my nasty gloves against my mouth without thinking about it, and my gloves aren't the cleanest things in the world.

So anyways, I've been home sick. Since last Monday. Tomorrow I'm going to attempt school, but I don't know how it will go. I can't keep missing, especially since in October I KNOW I will be missing.

Anyways. So, bye for now.


16 September 2009

Still home sick

I'm still under the weather.....no, I didn't kiss any pigs, I'm just not feeling well.

I don't know if school is in for me tomorrow or not. Hopefully, but depends on what my stomach does. We'll see.

Bye for now,


15 September 2009

Sharing the love (or the sick)

So I'm home sick today. As is everyone else except my mom. Because she's made of iron or something.

Anyways. Friday was a good day, as was Monday. I didn't do anything this weekend.

Actually, Monday was a bit rough. I didn't have a para. Well, I did, but not for first period. Mrs. B was sick so for first period I had no one, so missed that class. Then for second and third period I had one para, and fourth through 6 a different one. Ah well.

Umm. Oh I contacted a local Aussie breeder yesterday. She was recommended to us by my dad's former boss. We've been looking at Aussies to self train for me, and she actually has some puppies. But, she also has two 2 year old females right now, and when I told her the situation and what we were looking for, she said that one of the females might be a good fit. She's already fixed, up to date on all shots, and has basic obedience and crate training. All of this helps us in the long run, because while any dog we get will need further training, this helps us a bit. So we'll be talking with this breeder over the next few days, as well as making some decisions here to see if this is the right choice at this time.


So yeah. I'm going to go drink tea and eat chicken noodle soup.


10 September 2009

UW Dermatology

So, I had my appointment with University of Washington Dermatology today. It went well. The doctor wasn't able to give us a solid answer, but he pointed us in a few directions. And he ended up referring us to a doctor at Stanford, because we'll be down there in October. So...yup.

One of the disorders he talked about is called "Periodic Nail Shedding" It's exactly what it sounds like. And the last paper written on it was in 1981. So, not much known about it at all.

Anyways, he did discuss nail care with us, what to do to help the nails grow back. He said that my big toe on my left foot has probably just had too much scarring to the matrix, so it's not likely to grow a nail back. One less to fall off I guess.

Umm...today at school was good. I have a para now, she's super nice. And I got to meet with my PT, and we discussed my evacuation plans in case there is a fire or whatever before an official plan is made.

Pretty much. Got caught up on my homework, which was kinda difficult, but it's done. I'm going to bed like...now.


09 September 2009


OMG. I've been OFFICIALLY diagnosed with Narcolepsy w/Cataplexy!!!

SO exciting!

So. My appointment with Dr. H went well, as you can see. He also agreed to the dose increase, I now have 15's and no more cutting to size needed. And he said something cool.

He did a paper a long while ago. In it, they studied kids who presented with full blown narcolepsy. Looking into their history, it showed that they didn't have symptoms present typical or all at once, like most doctors think it should. He said that the study concluded that kids who develop narcolepsy generally experience spotty symptoms, or the symptoms come and go at first.

So then he said that he doesn't feel that my symptoms are that uncommon in how they're presenting.

Okay. SO I'm excited.

And one thing I've been worrying about lately is the fact that when I'm 18, I'm no longer considered Pediatric with MB. But he said that because I'm already a patient, that he can continue seeing me until I turn 21. So that's one less stress.

Yay. My day is going so well, and I haven't even seen Kris yet =)

More later,


08 September 2009


So my day went like this.

Yesterday my nail (pinky on the left hand) came off.
It hurts. so.

I didn't sleep well at night, at all. Actually, I started bawling shortly after I went to bed for the night. I don't know why. My finger definitely hurt, but I'm used to it. I don't know. I think maybe the stress of everything with school and then the pain just got to me. Anyways, I didn't sleep well.

So. This morning I had a very hard time to get up. I ended up sleeping in for like, 2 hours. Then I made it to school in time for 3rd period.

My counselor got my schedule changed, so now I have first lunch. Nobody has been hired as my para yet, but Mr. A has been able to be with me the last few days and will be as long as I need him. Which is good to know, it takes some of the stress off.

I was able to leave 6th early enough to miss the rush of kids which rocks.

Then, I came home. And slept until 6-ish.

Umm, then ate dinner. =)

Tomorrow I have an appointment with Dr. H, and with Kris as well. I won't be going to school because of how they're spaced.

So anyways.


07 September 2009

I like Milk Duds.



So Friday was good. I still had trouble in 4th period, but at lunch time I was allowed to get out of my chair and walk around, so the little exercise gave me a boost.

I also got to talk to my counselor about changing my classes, and that's underway.

This weekend was good, I slept a lot. But yeah.

School tomorrow.

Yup. Gonna eat dinner, look over my Algebra 3 homework, and go to sleeeeep.

Night guys.


03 September 2009

September 3

Today was good. I'm tired, exhausted actually.

I had fun. But I kept drifting in 3rd and 4th period. I'm planning on communicating with my counselor via email to see if it is possible to change my class like I mentioned yesterday.

Still no para, and even though it was said A would continue working with me until one was found, that no longer seems to be the case. Today I had a different "helper" and tomorrow it may be him again or it may be someone else. I hope this is figured out by next Tuesday, because on top of the full class load with multiple challenging classes, I don't think I can deal with the stress of not knowing who my para is. I can feel it affect me during the day...I'm just hoping that that'll work out well.

Umm, not much right now, I'm wiped. I think I'll just go take a nap. Hopefully I'll feel better later after that.

Bye for now,


02 September 2009

First day of school.

So, my first day back this year.


It was awesome!

I absolutely enjoyed it, even with the little snafus.

The snafus include:
-No para. A took a better, more solid job, which I have no issues with, but it makes for a rocky start to school right now. First a new para has to be found, then I'll have to explain everything to them, and I'm hoping that I won't get paired with someone who will try to baby me. Because I can't deal with that.

-A few of my classes are not as accessible as I need (I can't get into a desk without some serious rearranging at the beginning of class; I can't see the board from the seat I can use) But I've already talked to teachers and let them know if I need help, or if things need to be changed. So it's all taken care of.

-I think I may need to switch my 4th period class to a different teacher. Same subject, but I may need to have my lunch first so I can take a nap and stay awake through the rest of my classes.

All my classes went well and it was good to know all my teachers are willing to work with me with whatever adjustments may need to happen with the wheelchair.

During lunch I took a nap and towards the end talked to my PT.

And then finished out the day. Went on a LONG bus ride because the afternoon driver is new and not used to this route. But she's super nice and funny. It's cool.

Umm, then came home, and didn't nap. But I did eat.

Boomer hurt his face crawling under the deck under the original concrete pad that used to come off the back of the house. It's all sore and he's been very crabby and skittish the last few days. We've been able to spray it with antibiotic spray, but he won't let us get close enough to actually wash it. If it gets worse we'll have to take him to the vet but for now we've got it under control.

Then we went to a friend's house, talked for a few hours, grabbed dinner, and TADA! home we are.

All for now,


30 August 2009

Hi There

I've had a good week. A tired week, but good.

Monday was spent with a friend I haven't seen in almost a year. And I haven't spent any real time with him for longer than that. He's like a grandpa to me, and he only lives about 5 minutes away. Unfortunately, he's sick, I've been dealing with my health, and I haven't had the means to get to his place. So yeah. Auntie C and I went to dinner with him then ran around helping him with errands.

Tuesday was spent at home, sleeping and doing other sloth-like activities.

Wednesday I went with Richard and Auntie C to Madigan in Ft. Lewis.
We accompanied him to his doctors visits, then we went to the PX and he got some things he needed/wanted. Annnd. Then we went to L&L for dinner. They have NUMMY! food.

Thursday...Auntie C and I went for a walk. Which was fun. Except it was hot, 86 as we were leaving the library.

Friday I went with Ms. E in the morning while she ran errands than we got coffee. I <3 her and was so glad to see her!

Today (Saturday) was no meds. So my bed and I had some quality time.

Pretty much.

School starts in 4 days!!!!


23 August 2009

Seattle Aquarium again

I got to go to the Seattle Aquarium again today, thanks to Starlight's Great Escapes. I had A BLAST!! I went with some close family friends, B, N, and Little Bug.

I didn't have to use my chair this time, which means that I got to see things I hadn't been able to last time. I got to get close to the Jellyfish Tube. I got to see the things in the tide pools. And I got to see the Flashlight fish!! We wandered around at the aquarium for...about 2 hours. Then we went for a walk and ended up at this sourdough bakery place. And....Oh! And we went to Ye Olde Curiosity Shoppe and I got these colored stones for Mom, Ash, Tori, and Auntie C.


All in all, great great day! I truly enjoyed it!

Oh, and I'm excited for school to start. Pretty much.


20 August 2009

Good week

So, I haven't posted since Monday.

Monday was pretty much sleeping.

On Tuesday, I went to the store with my brother and got a new bigger backpack that will fit all my stuff for the new year AND have room in case I need to carry some books.

Yesterday, we (Mom, Ash and I) went to Stadium to register. We went early because I still didn't (until talking with Miss E.) know if I was doing full days or half days. Well, I'm doing full days. And I am SO excited with my schedule. I'm taking Junior English, Algebra 3-4, Biology, World History?, Medical Careers, and Sophomore English. The reason for two English classes is because I need the first semester of Sophomore English and the second semester of Geometry, so next semester I'll take Geometry in that hour. Pretty much.

Umm, today was good. Auntie C was over, she stayed the night. She's a close family friend, so it's cool. We didn't do much (actually, nothing, at all) today, except work on iTunes. Totally new to me, I've never used it before. Then in the evening after the parents got home, Mom, C and I went out. We went to a friend's house, did some coffee and other general running, and then came home.

Tomorrow we have stuff planned.

BTW, I totally forgot what I did Monday and Tuesday for the most part...so if I can remember I'll edit it later.

Bye now,

17 August 2009

Company Picnic

Hey all, sorry for the delay.

About the Company Picnic on Saturday.

Highlights include:

-Seeing K, our friend that lived in MN like we did, then her dad got transferred here about a year after my mom did, so now they live in the area! We see her every year at the picnic.

-Me pushing Dad up a hill in my wheelchair. Let me clarify...40+ man in a purple wheelchair with his daughter (who's secretly supposed to be using it) pushing him....it was a sight to see. But it was a blast. =P

-Playing Bingo since it was the only age appropriate thing for us to do. Everyone but our family friend that came with won. We played for 3 hours.

- The BEES. They were everywhere.

- Seeing Jeff Bezos, the CEO and founder of the company. As my dad and I were walking in from the truck after putting some things away, he was walking in with his family. He asked us how our day was, he and my dad discussed the brew they had in the Beer Garden this year, Dad joked with one of his children, and then we wished each other a good day and went back to the family.
With how many international companies is there that interaction between CEO and employee? Probably not many.

-Ash and I rode the tractor powered hay ride and reminisced back to MN and NY days. Ah, good times, good times.

-I was allowed to do a fair amount of walking, so my legs disliked me quite a bit.

And, yeah. That was the picnic.

Then...I slept on the way home.

And when we got home, as I was walking in the garage door to the house, Dad started one of his power tools to work on one of the cars. It is LOUD and startled me, so I had some leg weakness. It only lasted about 2 minutes and I was back to being fine.

Then yesterday was no meds so I basically slept or wandered around the house forgetting why I was wandering around the house =D



13 August 2009


Why haven't I used "Tired" as a post title before?? Am I nuts? It's like....perfect.


My meeting with Kris went well, so that was good.
We talked a lot =)
After that Didi, (a friend up from Oregon) Ash and I went to the mall and hung out. I got some stuff for my room to help me keep organized this year. A whiteboard, and a paper organizer.

And then...today? Today I actually got up kinda early (for me anyways.)
Didi and I went for a walk. Then when Mom and Dad got home, I went with Mom when she took Ash and Didi to the boat.

And we had RAIN!! I mean like....North Dakota type rain. It was wonderful!

Then...we went to surprise a friend we haven't seen in like...2-ish years?
She used to be our downstairs neighbor, then she moved to California, and now she's back up here! So we surprised her tonight, and it was really good to see her again!

Saturday is my parent's company picnic. I'm excited because we get to see a friend we see only yearly. She was our (mine and Ash's) best friend in MN. Her dad worked at an Amazon partner there. Then, when we moved here, we thought we'd never see her again. Except her dad got transferred here too, so now we see her at the company picnic every year!!

So yeah. Oh, and a little good thing that happened. I got an email from a girl who is having some problems, and she reached to me for help after a friend recommended my blog.

That was cool, to know my blog is making some sort of impact somewhere.

So yeah.


12 August 2009

Going to see L!

Today I'm going to see N and L. =)

It will be funn.

Later I have my appointment with Kris. I'm excited 'cause I didn't get to meet with her for my last scheduled appointment. It was too hot.

Yesterday and Monday....hmmm. What happened?

Okay. Monday Ash and I didn't end up going on a walk because it started raining. YAY for rain! I think the dogs forgot what it was =P

Tuesday...I slept. Lots. I didn't get out of bed until like, 1. And then last night I went to bed at 8. Then woke up at midnight. Then went back to bed at 2 AM. Sleep was difficult for me for some reason.

so. Yeah.

Bye now.


09 August 2009

Med update.


Yesterday, I tried an up-ed dose of meds. I went from a 10 mg/9 hours patch to a 15 mg/9 hours patch. Just for a day to see if it would go better this time, because we tried last time with....scary results. We aren't sure if the bad attacks were caused by the higher dose, or if it's because of high emotion at the time, but anyways, we've waited a while before we go up.

It turned out great though. I was still in need of a nap, but between the nap and bedtime I didn't feel completely exhausted like I've been for the past month or so. It sucks that my EDS is getting worse, but at least the first day on new med dose didn't absolutely overtake my body.

Today Roo went home, and I didn't use meds. So I was more floppy, more tired. But even with that I was able to get some organizing I've been wanting to do done.
I was looking at my old journals/notebooks from previous grades, and found one from when I was in 6th grade in MN. It was fun looking at it and seeing how my writing style and penmanship have improved.

And. Ash and I are going to go for a walk tomorrow, so. I'm happy about that.



07 August 2009

Today was good =)

Roo is over again, he's staying until Sunday.

Today I had a rough morning...Mom says I wasn't talking clearly when she woke me up to put my patch on. I also slept until like, noon, and I didn't feel all that great waking up.


Anyways, Ash and Roo and I went on a super long walk!
(Not the best choice in hindsight, I had a few episodes of weakness and was DEAD tired when we got home..)

We had fun though. I got some books at the book sale, and then we went to the park.
We taught Roo to go down the slide!!! He loved it lol.
He gets down on his belly, army crawls onto the slide from the platform, then does this little extra push and goes down. SUPER CUTE!!


Now, bed time soon. I'm exhausted.


05 August 2009

I need some room to fly

I understand, Mom worries. It's her job as a mom to worry.

But I need some room to fly.

I don't want to feel like I can't do something because it'll upset her or whatnot.

Today, Ash and I walked to the library. It's cool, I'm on meds, there wasn't a lot to worry about. Mom and Dad came to get us on the way home. I wanted to walk home. Ash had ridden her bike down, which meant that she'd have to go home alone.

We asked if we could stay. Mom said we couldn't because she didn't want to have to stress.

I understand. If I'm not at home, then things can go wrong and Mom won't be able to control the situation. I understand that when or if I have an attack, 911 is usually called and it's stressful and a hassle.

I'm doing better. Period. Not maybe sorta kinda. I've not had to deal with any serious incidents in a while, and either have they regarding me. I had an attack yesterday and even that ended fine.

I'm not trying to make her life harder. I just want some freedom and independence.

More and more frequently I've been getting this feeling about everything from my health to school. I want to be able to make my own decisions. I want to have the ability to mess up.

I just don't want it to turn into either, I have my family's help or I don't. I don't want it to be that if I make my own decisions, I won't have their support, or it won't be freely given.

I don't know. I'm feeling kinda caged right now....


04 August 2009

Sleepy time very soon

I spent the day at Ms. E's. It was super fun, and we got a LOT done. Yay for her.

I DID scare myself into an attack while on meds though.
It was full body, but didn't seem to last long. I bumped my elbow but no major damage.

So yeah. Tomorrow I'm not going to B and N's because they've got plans. But that's okay, I'll get to sleep in tomorrow =)



03 August 2009

Going to the movieee

I will tell you how it went when I get back =P

The movie was fun =)
And we got coffee and wandered in Border's afterwords.

Tomorrow I'm going to go over to her place. And Wednesday I'm going to B and N's.

Yup yup.

Now I'm going to nap.


31 July 2009


Its FINALLY cooled down some.

Wonderful =)

And, well, no, that's pretty much it. I'm going to a movie on Monday with Ms. E...

Okay. Sorry I'm boring and have nothing to write about but my life is pretty much sleeping and sleeping right now =P



29 July 2009

Too hot

Today Seattle broke record highs. Actually, it got to the hottest it's ever been dating back to like, 1891. 102 degrees Fahrenheit last I heard. So, I'm basically having flashbacks of Minnesota summer, and realizing that if we still lived there, I might be dead right about now.

Anyways, too hot to do much of anything including posting. My week has consisted of chugging cups of ice water, staying in a tank and shorts all day, and hiding out up in my parent's room, because its only 71 degrees in there.

Pretty much.

I didn't go to Kris's today, simply because it would've been too hot in the rooms for me. As it was, I was getting floppy at dinner. We went to this delicious Japanese buffet. It wasn't the kind with a ton of American food though, which I liked. Many, many different types of sushi, which I had some of. I also had a couple of Japanese pastries, and some other fun good food.

Now, it is time for me to go melt into a puddle of goo.


26 July 2009

A came today

A came over today. We cooked food on the barbecue and just....talked. Talking is fun =)
It...I don't know. It's hard to put to words how special it was to SEE someone with Narcolepsy/Cataplexy. I can talk to people all I want, but until you see someone who's like you, who's dealing with this crazy complicated disorder, yeah. IDK

In any case, I super enjoyed her time here, and I hope that in the future either I'll be able to travel there, or she can travel here.

Now...I shall sleep.
Because I didn't nap today, and I am tiredddd.

Bye bye,


25 July 2009

L's Birthday

It's L's birthday today, and we're having a party for him here. He's turning 3! Its so exciting to look back and see the progress he's made in the last year. You see, he has ASD, or Autism Spectrum Disorder. This time a year ago he wasn't verbal. I think he had like, 10 signs and maybe as many words, if that. He wasn't comfortable with us yet, so we didn't get to interact with him much.

Now, he'll ask to be picked up so he can see the birds. He'll ask you to come play with him in his ever so cute voice. "Bee, Pay?"
He's pretend playing, that is, taking cars and making them drive on roads, making the Fisher Price people walk and talk. Before, he would just line them up.

We got him a table and chair set, some new pieces for his train set, and a little crawl tent. I hope he enjoys it all! I'll update later with how it went.

It was super fun!! I had a blast. And L certainly seemed to enjoy his time and gifts =)
The one downside, it was very hot. So I hid upstairs in Mom and Dad's room with the AC and slept. And later on, B and I had a heart to heart. I've had some rough days in the past week, mostly Tuesday, and B was worried. I love him dearly for it!

Anyways, everything went great and was fun!


24 July 2009


I met A today. She came from Chicago to see me.

She also has Narcolepsy.

It was SUCH a relief to see her. Like, I've talked to her for a while. But I've never met her.

It was good to actually see someone like me. To know she goes through some of the same day to day battles I face. Anyways, I'll have more later, but I need to go to bed.


22 July 2009


Has been slow. Not that I haven't had stuff to say, I just haven't had the motivation to post. Which, also isn't actually because I'm not interested in this blog, I just.....I like sleep. I have been spending a LOT of time sleeping...

Anyways. Yesterday Ash and I took the city bus to the movies, and we saw Monsters vs. Aliens.
It was good! And super cute. After the movie we walked to the mall and hung out in Borders.

Then....today we went and looked at a house. It's not in this school district, so it'd be a new school. But it's an AWESOME, awesome house and property, so I can't argue...I mean, I don't want to move but. We're going to be putting an offer in on it, so possibly moving soon.

If we don't get that house, we're staying where we're at. For good. So either we're moving or we aren't and that'll be the end.

Tomorrow a friend is coming from Chicago. I'll share more on that later.



19 July 2009

Seattle Aquarium

Okay, so yesterday was very fun. We had friends over for a BBQ, with some super funny conversations lol. And Yeah, yesterday was fun.

Then todayyy, we went to the Aquarium. It was SOOO FUN!

We got there about 10, and wandered through the exhibits. I did end up using my chair, because we had no idea how crowded or hot or stressful it might be. It was a bit hard for me to maneuver in some spots, but it actually wasn't the fault of the aquarium, more the guests there. Most people were very polite, and I wasn't pushy by any means....I probably could have actually spoke up more.

I think my favorite exhibit was the Pacific Coral Reef. And the jewel tanks. My second was River Otters...they were VERY playful!!

I got a little magnet-clip seal as a souvenir.

After the aquarium, we went looking for lunch. The first restaurant we tried was called the Crab Pot. I'm sure they're usually very good, but they were inconsiderate when trying to seat us so we didn't end up eating there. They tried seating us at a table for 4, in the middle of a crowded dining room. The waiter suggested I sit at the end of the table! If the table had been bigger and in a larger space it wouldn't have been an issue. But I would have been in the way of the other customers, if I had sat at the end my chair would've been up against another diners'.

So we went to Steamers. Very good food, friendly wait staff.

Thennnn....Home. All in all a very good day.

And I hope we can do it again!

And now I'm maybe going to go on a walk.


17 July 2009

Too hot for me today

It was wayyyy too hot for me today. It got up into the 90's and was about 80 in the house. I basically spent the day in bed or in the cars. (The cars are cooler =P)

Ummm, Roo went home today! I really enjoyed the opportunity to watch him, because it gave me some insight as to what it would be like to raise and train my own service dog. He wanted to be either outside (Boomer didn't eat him!!!!) or with me. And if we were sitting outside for more than 10 minutes, and I came in, he'd follow me.


I didn't get much done though as far as chores or anything. My big toe, right foot, keeps getting infected. This is the second time in two weeks. Now, we've been trying to deal with nail related infections at home and for the most part we've been able to. But the nail is just NOT happy. So, may have to go see Dr. S about removal, antibiotics...IDK yet.

We heard from Dr. P today. I was supposed to be getting the spinal tap I need for Stanford at MB, but he informed us today that the hospital doesn't have to capabilities to ship the sample. And, it's understandable... the CSF has to be frozen to -80 F within 30 minutes of the draw.

So, we're going to call Stanford again and see if they have worked with any doctors in the area who have drawn AND shipped samples to them before. If not, we can wait until we go down in October...it's another diagnostic test, and it may change my treatment, but right now I'm doing okay. So it's not as big a deal.

Annnnnd. Yeah. Okay, long post, WELL overdue.

Probably more tomorrow. We have friends coming over, then Sunday is the Aquarium!!! EEE!!!
And And And, I might not have to use my chair! Depends on how I'm feeling and how hot it is and and and lol

Bye now

14 July 2009

Fed up

I'm done. I'm seriously, completely and totally fed up.

For the last three days Ash has been promising me we'd go for a walk. Now, she doesn't want to. I know it may seem like such a trivial thing, but it isn't.

I can't go for walks whenever I want. If someone doesn't feel like taking a quick stroll around the block, oh well to me. However, if Ash wants to go stay at her friends house overnight or go for a 30 minute bike ride, that's all fine and okay.

I understand that I've got issues that make things more difficult. I understand that yeah, I've been to the ER WAAAY too many times.

But I am so over not even being able to take a nap without someone checking on me. My bedroom window is screwed shut. It doesn't open. I'm pretty sure, I'm not leaving the room, and no big scary monsters can get me. I don't need to be checked on.

I'm frustrated that I can't take a shower without someone coming into the bathroom and checking on me. Yes, I've had an episode while I was taking a shower. ONCE. I was fine. I don't take long showers. I was also not on the greatest meds at the time....in fact, I don't think I was on any.

If I don't answer someone when they call because I'm tired or, God forbid, I've been listening to music and they can't hear me, then I'm in big BIG trouble.

I get nagged about my school work. I WILL FINISH SCHOOL! I want nothing more than to finish high school and get into college. I know what needs to be done and I'll do it. I don't need the motivation. How about you focus your energy on Ash or Tori? They need a push too.

I need a break. I need a break in the worst way. I need to feel like I have SOME level of control over my life. I'm going to be 18 soon, and I feel like I'm 5. I'm not asking for someone to hand me the keys to a car and say "go for a drive." I'm asking to be able to do simple, everyday activities without someone holding my hand every step of the way.

Sorry. I needed to vent. It's been a rough day.


12 July 2009

Winnie the Pooh!

I had much fun today with Ms. E!!

We went to a Starlight Great Escape, a Winnie the Pooh play put on by a local kids' theatre.

It was a super fun, super cute play. And the kids were great, they all seemed to know their lines, and I only noticed 1 slip up. (I'm looking from the eye of a former stage worker, not being judgmental)

So it was cool. Then we came home and ate linner at Panera.


Tomorrow morning she's bringing Roo over. I'm going to be watching him for the next week, which will be fun. It'll kind of give me a look into what it'll take for me to really be responsible for my own dog. Like, I'm responsible for Boomer, but, everyone in the family cares for him. With a service dog, it will be only my job to take care of the dog, unless I'm unable to.

So yeah.


10 July 2009

I'm running out of good ideas

For blog post titles.

Anyways, Ash and I just got back from a long walk. It was fun!

But hot...yeah.

And we had a cool moment on SBW earlier today. A special guest signed on earlier. It was very nice of her, and I just thought I'd put that down.


Bye now.


08 July 2009


Ash and I got back from a walk a bit ago. It was fun, and the park we went to had a see-saw =D

Yup, it was fun.

And...I think we're going for another walk tomorrow. Cause she's cool like that.

AND. This weekend I'm going to a play with Ms. E for her birthday. Not paid for by me, because it's a Starlight GE event, but I'm paying gas. I just can't drive her there lol.

So yup.


06 July 2009

I'm positive.

We just got the results back.

I'm positive for the HLA marker that 90% of people with Narcolepsy with Cataplexy have. Now, 20% of the general population have it as well, so it's not a diagnostic test for sure. But, there is the possibility of me having Narcolepsy w/Cataplexy...

I think now from here is the spinal tap to test the level of hypocretin in my CFS.

I'm scared out of my mind.

But, one step at a time.

That's all for now I think,


04 July 2009

Yay for Independence!

Day, that is.

Yup, it's the 4th of July.

In 1776, John Adams wrote this in a letter to his wife, Abigail.

"The second day of July, 1776, will be the most memorable epoch in the history of America. I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival. It ought to be commemorated as the day of deliverance, by solemn acts of devotion to God Almighty. It ought to be solemnized with pomp and parade, with shows, games, sports, guns, bells, bonfires, and illuminations, from one end of this continent to the other, from this time forward forever more."

He was off by two days. But, we do still celebrate the holiday with "pomp and parade" as he wrote.

He also wrote, in that same letter, that he is "well aware of the toil and blood and treasure, that it will cost us to maintain this Declaration, and support and defend these States. -- Yet through all the gloom I can see the rays of ravishing Light and Glory. I can see that the end is more than worth all the means."

Soldiers of every generation have fought to defend and support our country. In history, it was on our own soil. Now, today's soldiers are overseas fighting, still for our country and for the independence of others.

John Adams thought the end was worth all the means. It is. I get to go celebrate this holiday with family and friends, without worrying about things like my freedom.

Keep in mind it wasn't always this way, and please keep in mind the men and women overseas and those away from their families today. It's one more holiday and one more set of memories they don't get to have.


03 July 2009

mmmm....Red Robin

We had Red Robin for dinner and it was nummy!

So yesterday. Was busy, but good.

I got to Blake and Nick's early, and the day was pretty low key. It involved a lot of driving, but not a lot of excitement lol. I had fun though. I love going over their. And L is such a cutie!

I DID try to nap this time, but was unsuccessful. I had an episode of what I *think* is sleep paralysis. I obviously can't say for sure, but. Anyways. It sucked, and I didn't get any sleep, and I felt a bit rattled for the rest of the day.

Blake and I ended up picking up my mom at the train (popo fain in L speak) and going to our house. Then to dinner, Blake and L and Mom and I. Yup, that was fun!

Umm. So yeah.

Today also not much, basically housework and trying to keep cool. But we did go out for dinner =D

Tomorrow we're going over to a friend's house for the holiday. It'll be fun. They have a very nice view of the Sound, and you can see all the fireworks from the different areas.


01 July 2009

Farmer's Market

YESTERDAY, I went to Blake and Nick's for the afternoon so Bro could have some free time.

It was VERY fun. I don't often (ok, almost never) get to run after a small child with bundles of energy, so it was a good workout. And, I slept really well! We walked (rolled) to a farmer's market about 6 block from their house. It was a longer distance than I'm used to all at once, but it actually wasn't that bad. We rested enough in between that I didn't struggle from weakness or tiredness on the way back. And, yeah. I just had loads of fun. I'm going over again tomorrow!!!

Today was fun as well. I didn't use my chair going into Kris's, which was cool. She was surprised to see me without the chair. We also sat outside, which was fun. A bit windy, but it was still fun.

So yeah. Tomorrow I'm going to Blake and Nick's in the morning.

OH! I signed us (family) up for a Great Escapes today! We're going to the Seattle Aquarium on the 19th. SO excited!



28 June 2009

Sorry I let it slip.

I REALLY need to keep on top of my blog...mostly for me though. I would hope there are people reading this who are interested in what's going on in my life, that care. And I know there are those few (you know who you are). But I'm kicking myself for not keeping up.

Even though not much has happened. No news from the docs.

I've been able to get great sleep the last few nights. I've been taking Tylenol PM at night for my toe...nail came off. So, I've been sleeping very well =D

And...OH we have plans for the 4th.

And I get to Roo-sit the 13th-17th =)


We should also know about the house within the next two weeks.

*crosses fingers, toes, and eyes*




25 June 2009

Got to hang out with Ms. E today!

ALLL day. It was fun. We did cleaning and organizing. Lots, and lots, and lots of organizing. =D

Yup. I LOVE getting out of the house to do stuff. Yup.

Bye for now,


22 June 2009

Starlight Children's Foundation (cool fundraiser)

Hey guys. I want to share with you the blog of one of my readers.

The company she's with is doing a WONDERFUL fundraiser idea.

A Starlight Children's Foundation "Starlight Bracelet."

It's very pretty!

Here's the link to the post: CLICK THIS!!

If you all could check that out and maybe support Starlight Children's Foundation, it would be MUCH appreciated!


19 June 2009

Communication with Stanford

Today, after my appointment with Dr. H, we got a call back from Stanford.

We talked a lot but it basically comes down to this. I'll have a blood test to see if the HLA marker is present. If it is, either we'll travel to Stanford, or maybe we'll be able to see a doctor up here who will do the spinal to test the hypocretin levels. My appointment at Stanford isn't until late October, so if we can get these things done before hand, it's much more info before we go. I already have an appointment with Dr. S on Monday for the blood test.


My appointment with Dr. H went well, he agreed to keep me on the same meds, but also lets us know there are a few other drugs out there that might work if we ever want to try them.
When we told him that we had thought about going to Stanford his only question was "When are you going?"


And, we found something else out about why I might be having attacks in the bathroom.
We found out earlier this month that it's not uncommon for people (with N/C) to have episodes while in public bathrooms.

But Dr. H said that there is some reaction that happens (or can happen) when you don't use the bathroom as often, then empty your bladder. He said in normal people it can cause fainting (like, if you didn't use the toilet for 10+ hours, then emptied your bladder, there is a possibility of you fainting.)
He said that it causes a reaction (parasympathetic discharge? reaction?) similar to you laughing. Basically he said it made sense. Only when he said it it was much less complicated =)

BUT, we've found out that if I go more frequently, I haven't been having attacks in the bathroom.

Which means, I need to pee more often basically.

So yeah. Good good.

Umm, I don't think there is anything going on later this weekend.