07 December 2010

Update: Health

Physical Health:

Since my last post, I've started seeing a new doctor. She's a neurologist that specializes in sleep. With seeing her, I've also been put on new meds. I was put on Effexor XR, and antidepressant, to help with the cataplexy. It's doing it's job, physically, but mentally, it's thrown me for a ride.

I'm also now on a sleep medication. About a month back, I had an episode of sleep walking. I ended up going out my window and down the road. A neighbor called 911, and I was treated on-scene for cold and hypoglycemia. Because of that, and my history of "fugue states" she put me on a med used to treat sleep walking, Klonapin.

It works...I can finally sleep through the night, it feels like. But it makes mornings hard. And I've been having problems with severe dizziness since I started the drug. A lot of days, I'm so dizzy I can't do more than stay laying flat or sitting up slightly. And it's like that most of the day, regardless of whether or not I eat, if I drink a ton of water or almost none, it doesn't seem to matter.

Mental Health:

This has been harder. As I said, the Effexor has been helping with cataplexy, but it's not been helping at all with my mind. I've been depressed, and I didn't quite realize the depth until Tuesday last week. I tried to run away from home. This wasn't me being a dramatic teen, trying to show my parents or anything. I literally got so depressed and stressed I felt like the only way out was to get out. A lot happened, which I don't want to go into here, but I ended up in the Emergency Room that night. I talked with a crisis counselor, and asked if I could get help. I didn't need the kind of help Kris could give me. I was so depressed that night I felt like there was more going on than I or my family could deal with.

Unfortunately, I was told that although there were beds available, I would not be placed in one that night, due to having Narcolepsy. I hadn't made a serious attempt on my life, in the sense most people think of in suicide attempts. But for me, running away is like trying to take my life. I had nowhere to go. I didn't have my medication, which would have left me with terrible withdrawal symptoms and completely at mercy to my condition, had I even made it through a night. And I was told, bluntly, that had I tried to make an attempt on my life, it would not have gotten me into a bed. I would have been fixed up in the Emergency Room, and sent home just like I was Tuesday night. I didn't realize how screwed up our health care system is, but Tuesday showed me.

I'm doing better, both mentally and physically, and have an appointment with my sleep specialist, Dr. M, on Friday. I'll know more then.

More to come...


Update: School

Okay...where to start?

Since I last posted, a lot of stuff has changed education-wise.

First, I started at NP, an alternative school in my district. Things seemed to be working out there. The classes were small, and I was on track to graduate. The work was independent, which I like, but I also missed my friends from FP. I was only in school on campus two afternoons a week, and even with that, I was having a hard time managing making it through the day, if I even made it to school.

So...I started thinking again about my other options. I knew I could just struggle through the year, but I don't thinks that's whats best for me health wise. So I looked into getting my GED.

For me, it is an internal struggle. I have worked SO hard over the last 4 years to be able to graduate with a class (forget MY class, I just wanted to walk) but even that seems too far out of reach right now. But the more I think about it, the more I realize that it's not that I'm giving up. I'm taking steps to finish my education. Can it make getting a job in the future harder? Yes. Can it make getting into a college harder? Yes. But I don't feel like the stress is good for my body. I don't want to have to "just push through" this year. I want to feel accomplished when I get my certificate saying I completed my high school education, whether that's a GED or diploma.

So that's where I am as far as school is concerned.

More to come...


27 October 2010

Starlight Luncheon

I was asked to speak as a Starlight Teen at the Annual Starlight Luncheon on October 18th. I gladly accepted and had a blast! This post will end with some pictures of my outfit (and Tessie) and an article of the luncheon.

25 September 2010

How long overdue?


Okay, maybe I'll get back into what I did with the rest of my summer later, but for now, I'm just going to update on the past week.

Last Thursday, I went down while I was taking a test, during my lunch period. No big deal, thought everyone, until I started having problems with my breathing. I was experiencing cycles of hyperventilation, followed by periods of apnea. The problem was, that it was taking a looong time for my body to kick back in with that whole breathing thing.

So medics were called, and I was taken to the hospital. Okay, we've dealt with new things before. Only this time, it was baddd. I was intubated Thursday at about 1 PM, and I woke up out of the sedatives on Friday morning at 8. My whole day, gone.

I got out of the ICU at about 9 Friday night, and was released from the hospital on Saturday morning. Because the periods of apnea were so prolonged before the intubation, I actually suffered from something called atelectasis. Basically what happened is because there wasn't enough pressure in my lungs, the alveoli started to collapse. That, plus the massive amounts of Propofol I was on (twice the maximum amount ICU pumps allow) kept me home for a few days.

On Monday, I experienced this again, while leaving my doctor's office. Once again I was intubated, only they didn't sedate me well, and as I came out of an episode, I pulled the tube out about 30 min after it was put in. They treated me on O2 for a bit, but let me go home that day.

Then, again on Thursday I had another bout of this that sent me to the ER. This time, the ER doc basically employed a "wait and see" policy. She decided not to intubate, and just used an Ambu-Bag when my breathing stopped. This helps decrease over-all stress levels, and the episodes resolved on their own.

So. When I was in the ICU, a sleep specialist talked to my parents, and they agreed I need to be on something for the Cataplexy. We don't know that this is what's causing the breathing issues, because those seem to be tied closely to stress, but we do know that since I've been on the anti-depressant, my regular episodes of Cataplexy have already cut back, and I just feel better in general.

School is going well, for the most part this year. I've missed quite a bit, I'd say 2-3 weeks already, but I'm staying caught up in my classes, and I really enjoy all of them.
I'm taking Senior English, Freshman English-Credit Retrieval, World History, Civics, Anatomy and Physiology, and Sports Medicine. So.

Yup. That's what's been up the last week.
Okay, I'm gonna go now.


*Pic from the ICU after extubation.

29 July 2010

July Update thus far.

Social: The first week of July, siblings were gone on their summer vacations over the fourth, so Mom, Dad and I were at it alone. I stayed with some friends during the day for the week, so Mom and Dad could work. I really enjoyed the time away from the house, it felt good to get out. I've also stayed the night at N's last week, and we did some 2+ hours of exploring the water front. Her mom was on call and her dad was running on the water front, so was very close just *in case* but all went well and I had a blast!! I've also spent some time with Ms. E so that's been fun.

School: What school?? It's summer break =P
I did go get registered at FP, and am excited with the classes I'm signed up to take next year. No math or science, but I'll manage! Also, instead of trying to fight for a para without me being on an IEP, the school has agreed we'll see how Tessie does first. Now, she's not been in a school setting full time, but we expect her to do very well!! This is what we've been training her for, so!

Health: On July 1st, I had a fugue state and wandered a couple blocks from the house. Due to our good pre-planning of going to the fire station and introducing me, my condition, and Tess, the situation was handled well by the responding fire fighters. I was already alert when they got there, so they put me in the ambulance and took me home. Their only concern was my blood pressure, but I assured them it's not uncommon for it to rise, so they released me.

On July 8th, I had a second fugue state. Both days I was home with sisters, but had been sitting outside, and both were severely influenced by being in a new house and the heat.
Unfortunately, on the 8th, it was about 90 degrees out, and the asphalt was even hotter. When I collapsed, I landed on the roadside and got 2nd and 1st degree burns on my arms and legs. This time, I was taken to the hospital, and treated and let home. For the first time, no one had called my parents first, so it was a completely new experience. Not only was I at a new hospital, I had to deal with the nurses, admissions nurse, and all that alone. I called mom and dad as soon as I was allowed, and didn't DIE...but I'd rather never do it again lol.

I've been doing well still, and the few spots that got 2nd degree burns are coming along in healing. I also got a medical alert necklace that doubles as a USB, so I can store more detailed info on it.

Family: As I've said, siblings took off the first week of July, so Mom, Dad, and I finished cleaning the old house ourselves. We got it done and never have to go back!!
I liked the time just the three of us got to spend together, especially the time Mom and I got. I know we used to, and still do to a point, spend a lot of time together at doctor's visits, tests, and hossy stays, but it felt nice to go to garage sales, and shopping, and do "normal" mom and daughter things.

June Update

Social: Not much happened.

School: The end of school went well. I was able to finish a ceramics project for my teachers. I made 11 cups, glazed them in a deep blue on the outside and a golden yellow on the inside, then painted in gold on the outside of each one "SHS" with a paw-print. The cups were a hit, and everyone was excited to receive theirs. I had a lot of discussions with my teachers. All of them congratulated me on job well done this year, on keeping up my grades and staying focused despite the challenges I did face from the N/C. I'll really miss Stadium, but I'm glad that I had the time there I did.

Health: So, health-wise, things were finally more stable. The meds leveled out in my system which helped. I also started birth control to help level out my hormones before and after my period. I was having horrible symptom, anger; anxiety; and it wasn't helping with my episodes at all! Luckily, since I've been on it, I've not had the same emotional roller-coaster, not just the week before and during my period, but all month is better.

Family: We did get the house in Summit, so much of June was spent going from school, to packing at the old house, to going to paint at the new house after mom and dad got off work and during the weekends. It was very, very hectic. And towards the end of the month, Ash, Tori, and Bub had trips planned, so the very last bit of cleaning the old house was left to Mom, Dad and I. We got it done, with very few episodes on my part, as I would take time to sleep if I needed or cool down if I needed. The last week of June, we started living in the new house, OUR house, full time.

20 July 2010

May Update

Social: Prom was fantastic! I had a blast. Toward the end I had an episode, and had to go to the ER at the paramedic's requests. I was also, after prom, asked an amazing thing!
I was asked to write up "My Story" for a Starlight newsletter.
I was also asked to be a guest speaker at the Starlight Luncheon in October, both of which I said yes to. !!!!
I also got to go to a friend's house a few times and stay the night, which was cool for realizing I could handle my condition outside of home, without family around. We also got into the house in Summit and started packing.

School: School went well the first half of May, but it was complicated. I was out of my chair full time in all my classes, unless I deemed it a bad day, or my para was uneasy for whatever reason and I stayed in my chair. Still, my grades dropped because my meds stopped being effective at the dose I was on. I also had three bad episodes, which I'll go into more in health. I still kept my grades above C's in all but one class, my junior english class.

Health: Okay, so this sucked health-wise. I had to bump my meds up to 50mg because at 40, I started falling asleep in class towards the end of the day. With finals coming up, I needed as much class time as I could get. On May 8? I had an episode in Geo, just got too hot, and fell out of my desk. I landed on my left shoulder and bruised my collarbone. It took about a month to get over that, but all good now. Then, towards the end of the month, the 18th and 19th, I was in the middle of my med change.

The 18th, I went out to the water fountain outside 3rd period to fill my water bottle. I slipped on some water, scared myself, and hit my head when I went down. I was taken to the ER for a CT scan, and let go with just a goose-egg. I was taken to TG, because I'm no longer young enough for MB, so it was a bit new. But it went so well, we weren't concerned.

Then, the 19th, things were a bit more serious. I had a sub para, and the school nurse and her assistant were also out. Now, I'd worked with all 3 subs before, so I wasn't concerned for the day. However, after 3rd period, I was using the bathroom and had an episode. During the episode, I started having shallow breathing. This is something that's happened before, but the sub nurse apparently thought I stopped breathing, and said she couldn't feel my pulse. She began CPR. To restate, I DID NOT stop breathing. Fortunately(Un?) she wasn't pressing hard enough, and didn't break anything. When the paramedics got there, they put me on O2, ran an EKG, and weren't concerned, but took me to the ER to be checked, for obvious reasons. Things were a bit more hectic that visit, with multiple IV's started and more tests run, but things still went smoothly.

I also had a fugue state on the 24th, the Monday after. I was given Narcan when the paramedics were treating me because I was in a very deep episode, and my breathing was again shallow. Even though the responding medics knew me, they hadn't ever seen me so out. We think the seriousness of the episodes was due to med change/finals/moving stress.

Eventually though, my meds leveled out and things got back on track towards the end of May.

21 April 2010

Social Update

So, we're not in the house in Summit yet. Turns out, they needed to fix the septic system, as it hasn't been touched since 1957. But, a new one is finally in, and we're told we'll be signing paperwork on Monday. This is like, the 6 billionth time they've said that, but it sounds like they're for real now.

I've still been getting out. It's been good to have breaks from family, even if only for an hour or so.

Prom is on May 1st!!!!!!!!!!! SOOOOO excited for this.

Going to Starlight Prom again this year, and I can't wait.

Urm, again, I'm pretty tired, I think this is it.


School Update

Okay. Like I said, I've been getting out of my chair in all my classes. Even Geometry hasn't been a problem. I've been filling my water bottle with ice-cold water in the nurse's office before class, so if I get too hot I have a way to cool down.

My classes are all going well. My current grades are....

1) A in Ceramics-love this class, absolutely the best way to start the day.
2) E in Junior English- also love this class, but don't love the way she does grades. She enters assignments before it's due, so it looks like you haven't turned it in. So, my grade, which in all honesty would be like, a C, is currently an E, because of those phantom assignments.
A in Medical Careers-rocking this class.
4) D in US History due to missing work, in the process of fixing this.
5) C+ in Geometry, and this grade is on the rise as my teacher enters back work, so it should be higher in the next couple of days.
6) B- in Biology, which is SO cool!!! Yep, and it's going to be higher for this as well, once I get a 6 point assignment in.

Urm...I think that's it for now...


Health Update

Okay...so, lots since February.

I'm out of my chair in all classes in school. I've been walking around the school for minor trips (across the courtyard, from one side of the school to another, etc.) but still have to use my chair in the hallways.

My sleep schedule was fixed, for a while, but it got screwed up again. When I stay up too late or sleep in, it's just bad for me. I need to get better about regulating it.

As far as episodes go, I've been doing well. I haven't had a full body episode in so long, during the day. I have had some at night, along with a minor increase in sleep paralysis/hallucinations, but it doesn't seem serious, though I'll be bringing it up with my doc.

Emotionally, I've had a few more struggles, but it's for the best. I've been working on leaving counseling, as I've met all my goals again and again. Kris and I see each other once a month now. Between these times, it's gotten tense, and yes, I've had some meltdowns. But at the same time, it's been good. I'm actually learning how to deal with struggles, and have made strides in making Mom and Dad understand where I'm coming from. It's been hard, and sometimes feels like its
2 steps forward, 10 steps back, but I know things are improving.

I've been going on walks more and more. I've gone on 5 unaccompanied walks, 3 of those with Tessie. Mom and Dad have been really cool with it, as long as I check in every 15 minutes, and only go to the library, or they know the route I'll be taking. It's worked so far, and I hope it will stay like this.

Umm...one thing I've noticed more and more lately is that my heart has been giving me some trouble. I don't know how serious it is, and my parents have been a little worried about making a big deal of it, I think because they're wary about going down a huge road of problems again. Every day or so, my heart seems to keep skipping beats. It's extremely unsettling, but I had the school nurse check me out, and she said while I may be experiencing these symptoms, my blood pressure and pulse have been fine and my heart sounds fine (she's checked for the last few days) and it's been on an off, so it probably isn't that serious. Still, I'd prefer to get it checked out, but I was told it's probably best to wait. This is one of those, "Do I rank higher because it's my body, or do they rank higher because it's their insurance" things. Anyways, time will tell with that.

So umm...I think this is it.


Hi again

It's been....a long time.

So anyways. Updates by section, you know the drill.

16 February 2010

Yay! 4 classes!

I'm getting out of my chair in 4 classes in school now! Yay!!

Today was wonderful. I had missed Thursday, but it was pretty easy getting the work to make up. I have a test in US History, which I'll be making up either tomorrow or Thursday. And, we did research in two of my classes (Biology and Junior English) for those classes' research papers.

My Ceramic pieces are looking nice too, my tiles are being fired and my tray is setting to dry now.

And, in other exciting news, this week my Aunt is here. I haven't seen her since I was weeee little, but she's here this week visiting. So she'll be coming over tomorrow, and then also Saturday. I'm happy!!

Okay. Chores and homework beckon. ew.


13 February 2010

Pics from today

Woodland Park Zoo

I had a lot of fun today at the zoo!!

Ash, Mom and I went. We got tickets through Great Escapes (LOVE this program)

We were there for probably 3 hours, and I didn't use my chair!
It was so cool!

Kinda rainy, which was sad because most of the animals were hiding, but cool too, because it wasn't so crowded.

I hope we can do this again sometime.

Pictures to follow!


12 February 2010

Wrap up

So a lot has been happening.

I'm not going to make promises to post more often, because I seem to jinx myself when I say that.
But I'll try.


Social Update

SO, I've been having super loads of fun.

On the 30-31, I went to N's house for a sleepover. SUPER fun.
AND I went Bowling!!! I haven't done this in like, 5 years. AND I went and saw Avatar in 3-D with her. AND, I didn't even bring my chair!!!

So yeah, I had a super good time. I've just been getting out more, for walks, to the store, etc. which is all good for me mentally.

So yup.

I'm gonna lump family into social today.

We put an offer in on a house in Summit, about 15 min. south of here.

It was accepted, and we move in sometime before/maybe slightly after the end of the month.

So. The 2 year wait is finally over. I will have to switch schools, but not until next year. My parents are going to make it happen so Ash and I can continue to come until the year is over.

I'm excited, I like their programs, but I'm also nervous, because it's just one more school.

So yup. That's what's going on!


School Update

So. I have some gooood news!!

I've been getting out of my chair at school!!!

Let me back up to January. Remember I said there had been talk about me getting out because of my CPR cert?

Well, Dr. H wrote a letter saying at my team's (me, my para, the nurse, the teacher) discretion, I could start exiting my chair and moving to a regular desk in classes.

Then my para, PT and I sat down and decided which classes we would start with. Before semester change, it was 1p and 3p. These were my two quietest classes, and the kids were more aware of my condition/why I used the chair. I got my CPR cert no problem episode wise, but was shaking like a leaf nonetheless, because we had to go up in front of the class to perform, and I have TERRIBLE stage fright. I'm not one to perform in front of people without the safety of my desk.

Anyways, that went well. My grades at semester were as follows.

1-P (pass)
2-E (no credit. I need to make up an essay, then I'll get the credit back)
3-A (my rock star class!)
4-C (yay!)
5-C (again, yay!!)
6-E ( no credit, no chance for recovery.)

For 6th period (Sophomore English) I'll need to do credit retrieval. 2nd period's credit retrieval consists of finishing an essay I was gone for at the beginning of the year.

Okay. So then my new classes for second semester, along with if I get out of my chair or not, follows.

1p- Ceramics: Beginner *
2p- Junior English
3p- Medical Careers *
4p- U.S. History
5p- Geometry **
6p- Biology *

*I am getting out of my chair, permission to walk around classroom.
** I am looking at transferring to a desk, will talk about classroom freedom as well later.

Geometry is a very warm classroom because the teacher also does Computer Programing. He uses the comps to teach, which is the best learning method I've encountered when it comes to math, but it means 30+ comps going in an enclosed space, no open windows, and all this equals stress and very hot.

So, for now I may start getting out of my chair to a desk, then if things go well I may be able to walk around the classroom. However, towards summer, the class gets super-hot again, and I may have to return to my chair.

So yeah. That's where we are. Doing super well in my classes!

Stay tuned for a social update!


Health Update


As far as episodes go, they've been WAY down, minor, and short.

I still have been having a few, especially at night, but mostly limited to a little weakness and brain fog, not full body.

We heard back from Stanford about my hypocretin levels, finally. So, they're within normal limits. While this isn't the news we were hoping for, it's not a lost cause. They said that there are a few things to keep in mind:

1) I'm the youngest person they have a sample on. While parents bring their children in to be diagnosed, few go so far as to have a spinal tap done, and few need it. The average age of samples is like, 28. These people have had the disorder since they were teens, but 10-12 years for the hypocretin in their body to break down. It may be that in 10-12 years my levels would be that low, but there is no way to know.

2)There is somewhere around a 10% rate of atypical patients. They may have the symptoms, but normal hypocretin. They may have decreased hypocretin + symptoms, but normal sleep study. And, they may have the HLA markers, symptoms, and response to treatment, but WNL sleep study and hypocretin. <--That's me.

3) Regardless of what this is, it's responding to treatment. So we keep treating.

I stayed home yesterday, and almost every Thursday in over a month. It's not me trying to get out of assignments, or tests, it's something wonky with my sleep pattern.

Sometime right before this all started happening, I stayed up too late on a Wednesday night. When this happens, it can be VERY hard to wake me up in the morning. This must have coincided with me not feeling well one morning, and mom deciding I could stay home. Thus, I was able to sleep in.

Things like this can majorly screw up my sleep schedule and take weeks or months to correct.

Case in point, for the last month, I've been getting home from school on Wednesday, struggling to stay awake long enough to get some homework done, going to bed at 5, waking up at 9-10-ish for dinner, then going straight back to bed. Even with all this extra sleep, come the next morning I'm impossible to wake up, and no matter how hard I try to drag myself out of bed, I just keep drifting back to dreamland, rather quickly. Then, I need to stay home, and the cycle continues.

The easy thing would be to try and break the cycle, but that would require me to mess with my (current, albeit bad) sleep schedule, which could create a whole separate issue.I don't even want to think about it.

Part of the reason this is so hard is because the stimulants are working- too well. Yes, I said it, the meds that keep me awake during the day and help my floppiness are not quite welcome in my body. We were told to expect some issues sleeping, and I'm having them. Dr. H did say at my last appointment in January that if at by my next appointment in March I'm still not sleeping well, we can discuss sleep aids. This would help me reset my internal schedule over a weekend, and that plus a strict bedtime/wake time (even on weekends) should get me out of this mess.

On to school!


It's been how long?

Way, Way, WAY too long. Sorry to all of my loyal readers, I know most of you use this as a way of checking up on me, and without this you're a bit lost as to what's going on in my life.

Don't worry though, I've not been gone because of a downward turn, but an upward turn.

I think I'll try a monthly update, for both January and up 'til today in February, so you know what's going on.

Okay, here goes.

P.S. Read the next post =P

07 January 2010

Social Update.

I've been excited about this!

Okay, so I'm proud to say I've been able to go out, without parents or siblings.

I have this friend, N. She's...amazing, to say the least. And yeah.

Okay, for my birthday, she took me to get my nails done. I've never had it done before, and I was afraid, because my nails have been so gross. But, they've been better. SO, I got them done! They're SO pretty, and it was awesome to have that experience!

I've also been out to dinner with her, because neither of us could go to Winter Formal this year.

On Saturday, I went to her house all day. We watched movies, made cookies, and just BS'd. We also got our nails done then.

So yeah. I'm just....excited to be able to have this fun stuff.


Health Update

I've been doing SO much better!

I switched my meds to Vyvanse over Christmas Break.

Easiest way to measure my progress is that

1) I've been going out without my chair. Grocery stores, Kris's office, that sort of thing. But it's progress.

2) At school, we're actually discussing me being out of my chair. And, I've been getting out during lunch.

I have to get certified in CPR/First Aid in Medical Careers in order to get my crossover credit, but that would be hard, because of my chair. Except, it may not be impossible. I've been talking to everyone involved (Nurse, Teacher, Counselor, PT) and all have been pretty open to me getting out to get certified, as long as I have Dr. H's permission. So I'll be asking next Wednesday, when I see him.

So. Yup. Things are looking good!

School Update

Hi there.

I'm doing better in school, sort of.

Independent Study Geometry:
I have P (Pass.)
I'm on track for next semester, when I'll join a regular class.

Junior English:
My current grade is an E, because I haven't turned in an essay yet. It's done, but not in yet.
Otherwise, it would be a B or maybe A?

Medical Careers:
I have an A-, and once some more work is in, it'll be a solid A.

US History:
It's currently at an E, but I'm working on getting it to at least a C by semester.

I HAVE A C!!!! SO excited. Mostly because before Christmas Break, it was an E (not even CLOSE to passing.) AND, I have two more assignments to turn in, one of which is really combined assignment.

Sophomore English:
I have an E in this class as well. I need to have a discussion with my teacher to see what I need to do to just pass. I'm trying really hard to get caught up, but I need to know what all will be required.

All in all I'm doing better in the classes I wanted to get caught up in. Plus, I've made it to all my classes, unless I'm sick, like, normal person sick. Which is how I am right now.

And...I'm working toward getting out of my chair at school, which is exciting.

That's all for now.


06 January 2010

Yay! Happy 18th!

I'm 18 today.


It was good, I had a lot of fun. I had to come home early, however, because I'm coming down with a bad cough....sad.

Anyways, doing well. Tessie is working out wonderfully, she's truly a god-send.

Need to go to bed now,


01 January 2010

Happy New Year's!

Happy New Year's!!

My resolution this year is two-part.

I want to write more, at least once a week.

AND, I want to keep up in school, and get out of the chair.