Warning: Evil Amount of Venting

I don't normally write a post just to vent--or at least that's not my intention when I start--but this week has been so hard I just need to let it all out. This post will NOT be upbeat, I will NOT be focused on looking on the bright side, it will NOT contain any major life lessons, and it will NOT be inspirational. You've been warned.

That being said...

I had a really hard week this week. Three times the pain climbed unimaginably, meaning that even with the previous day's experiences (and therefore the capacity to imagine about 150% of that pain), I could not have imagined the pain I was in before I was in it. This means that on Friday afternoon, I was in nearly six times as much pain as I could have imagined Monday afternoon. I collapsed five times this week (bit excessive, even for me), spent all afternoon and evening, every afternoon and evening, lying in bed or sitting on my bed, missed a house activity last night because I was so exhausted, and had to cancel my plans for this morning so I coul dbe feeling good enough to clean my room later.

This whole week has just been a series of unfortunate events. Last weekend was my emergency-run-to-Target weekend...and I was also trying to wean myself off my medication...and I also decided to vacuum my room because I was feeling so good. Well, fine, except feeling good is temporary, and by Tuesday morning I felt awful (or at least I thought I felt awful). Then we had a fire drill. Wednesday morning, we had a lockdown drill; I was in the gym and went down the stairs because I was taking the drill seriously and thought the elevator would be too slow. That night we had another lockdown drill.

On Friday, I was actually doing OK, or at least OK compared to where I thought I was going to be. Then "Sasha" kicked me in the foot. It was completely accidental, she was ridiculously apologetic, and I was not angry with her; it honestly never even entered my head to be angry with her. But she had connected solidly where the middle of my arch would be if I had arches, on my bad foot. (No, I don't really have a good foot, but one is worse than the other.) By the end of that class, I was in more pain than I knew it was possible to be in.

I started walking home, and managed to get down the hall, down the elevator, down the hall, out the door, and about ten steps down the path. Then I collapsed. I stood up, walked down the path, and called to "Margaret" to come walk with me. We had just started walking when I collapsed again. She had been on the phone with her brother; she hung up the phone, turned to me, and said, "I have an idea. Let's go home." She picked me up and put me on her back and carried me home: or rather, she carried me, my rollator, both backpacks and both laptops home. I think it totals about 200 pounds.

When we got back to my room, I couldn't hold in the pain any longer and I started screaming and crying hysterically. "Margaret" sat on my bed with me and held me until I quieted down. Then I started getting ready for Shabbat; we agreed that I would not go to services, and "Margaret" would carry me to dinner when the time came.

I did manage to make it up to candle-lighting in the Dining Hall. Afterward, "Margaret" said to me, "We're taking you back," and picked me up and carried me to my room. I had intended to read, but I must have dozed off, because the next thing I knew "Margaret" was standing in my doorway saying, "So you DID go to sleep..." and she picked me up and carried me to dinner.

By the middle of dinner, the pain had decreased, but I was completely enervated and needed to go back to my room. "Margaret" lifted me up and put me on her back and carried me out. It was cold outside; ordinarily that's not cause for panic but that night it was too much on top of everything else. I spent the who ewalk back whining, "I'm cold!" to which "Margaret" responded, "Just hold on tight to me."

When we got back to my room, "Margaret" held me for a while more (I give her major credit for this because she neither likes, nor understands my need for, physical affection), then helped me get ready for bed, carrying me to the bathroom and suchlike. I didn't actually fall asleep then; in fact, an hour later I got up and stayed up for about two and a half hours.

I think today will be a bit better than Friday, maybe like Wednesday or Thursday. Still, the whole last week has jus tbeen really scary, and I hate living this way!

Children of Pain

For lack of anything current to post tonight, I'm posting an essay I wrote over the summer.

Children of Pain
On the outside, we look just like you. We laugh and smile, go to school, and form and maintain friendships. We are passionate about our hobbies, which, like yours, are rich and varied.

But there is something very wrong—haunting almost—about our normality. Our laughter is quick and almost too hearty, as if we must seize opportunities to laugh because there are never enough of them. Our activities are carefully rationed: at the school dance, we sit to the side and watch. Or we dance one dance and return to our seat, regretting every step we just took. Our faces are white and drawn, cheekbones stark beneath dark, hollow eyes. It is clear that something is not right.

People often assume that this is not real, or that we’re exaggerating it; that it is impossible to have problems like this at our age; that we “just want attention.” None of us has any idea what this means. Every child wants attention; who could fake deep pain? How many of us do you think are headed for Broadway, anyway?

Truth be told, we are some of the best actors you will ever meet. But not because we can fake real pain; our talent lies in disguising it. You never hear our animalistic whimpers or tears of despair. Our destructive, screaming rages happen in secret, behind closed doors. If we must scream or cry in public, we rush for the bathroom. When we come out, the world sees a fresh face and a smile—a smile we have carefully calculated and pasted to our faces to mask our terror.

The endless darkness of pain and sleep eventually gets to us. Appearances falter; weakness shows through. Do not mock us or hold it against us. We’re trying. Just help us, please, help us!

(Because I'm Into the Whole "Two-Posts-in-One-Day" Thing)

This is a post about isolation.

Tonight I was griping to "Nina" (she has great shoulders for crying on), and I said, "I get up in the morning, go to school, go back to bed, eat dinner, do my homework, go back to bed, go to sleep. My life consists of school, bed, homework, and sleep."

"Nina" responded, "That's pretty much my life too."

To which I pointed out, "But that's not what my life would be if I had more energy. You can go out with your friends for half an hour in the evening if you have the time. You don't worry about making it to the dining hall for dinner. You don't wake up in the morning wondering how many times you're going to fall that day...and it's not if; it's how many times."

I don't always feel this bad. But when I do, it's lonely.

(As always, comments from readers are appreciated.)

"I'm gonna stop looking back, and start moving on, and learn how to face my fears..."...because it's not like I have any choice!

[First part of the title from a song by Rascal Flatts]

http://www.youtube.com/watch?v=S1Qn5rus4Gg&feature=channel_page

[The link is to a forgrace.org PSA about RSD and early intervention. Watch it. It's moving.]

Now for the actual blog entry:

I don't usually like the whole chronological-order-summary-of-my-day type of blog entry, preferring to just let my thoughts ramble. Today, however, was so downright bizarre that I have to summarize it because it cannot be explained.

I got out of bed at 6:45 this morning. As soon as I put my feet on the floor, I could tell it was going to be a really bad day. As I continued on with my morning routine, my worst fears were confirmed when I felt my feet start burning before I even left the dorm.

Then, in first period class, we had a lockdown drill. I was joking yesterday when I said I thought campus security planned drills to coincide with my worst days...now I'm convinced they have superpowers. Normally lockdown drills are no big deal; I crawl to the corner as everyone else runs there, sit and wait it out. Today, however, I was in the athletic center, and I had to go all the way down the stairs. This involves picking up my rollator, balancing it on my shoulder, and leaning heavily on the bannister. It didn't hurt as much as it should have...not at that moment...

By the time I made it to lunch, I was in more pain than I had ever been in before. My feet were burning in a wet way, as if they were melting and sweating too, or as if I were stepping on lava. After lunch, I started back to school with "Margaret" and "Jan". "Margaret" was in a hurry to get back, and I kept stopping to rest. I told "Margaret", "You won't have time to finish your homework if you walk with me."

"You gonna take half an hour to get back?"

"Probably."

"Maragret" turned to"Jan", handed her her laptop, and said, "Hold this." Then she picked me up on her back, wheeled my rollator over to "Jan", and said, "Hold this too." And then "Margaret" carried me back to the classroom building.

All I wanted when I got back was to lie down, so I spent fifteen minutes lying on a bench outside my next class. Five minutes before class, I started getting up. I had gotten as far as kneeling on the floor to put on my backpack when "Lucy" came by, saw me on the floor, and asked if I needed help. I think I muttered something, but it wasn't anything coherent, so she went and got "John" out of his classroom. He came over and said something, to which I didn't quite manage to answer anything. So he said, "What happened here? Why aren't you speaking?"

I managed to respond, "I...hear...you....I...can...process...you....But...I...cannot...respond...to...you."

"OK, well, you have to go to class."

"That's what I'm doing! I'm trying to go to class!"

So "John" went back to class, and I crawled into my next class. When I saw the teacher, I said, "I'm doing the best I can. I know it looks pathetic, but I'm trying."

I managed OK through that class and the next class, and asked "Lucy" to walk me back fom school because I didn't want to be alone. She did, and now I'm lying on my bed where I'll be for the next hour at least.

I do try not to lean on my friends too much with this. Today I leaned a lot on "John", "Jan", "Margaret", "Lucy", "Nina", and "Maya"; I figure leaning a lot on all six of them is better than leaning unimaginably on any one of them.

My life is depressing right now.

Stuck

OK, so I am stuck in the house for the evening because I feel too horrible to walk. I made popcorn for dinner, and I will sit here and eat it and try to have fun. I need to take som etime to do my homework, but other than that, I can read, color, surfthe internet, possibly knit...I have half an hour built in to call my mom...I have no reason to feel sorry for myself.

And yet on some level, I do feel sorry for myself. I hate not having control over my life. I'm a social perosn; I was looking forward to eating dinner with friends tonight. I had plans for this evening. Sure they wee just plans to sit around knitting and hang out with friends later, and eat dinner in the dining hall, but they were plans just the same and now I can't keep to them.

And I felt awful this afternoon...it's starting to ebb now but only because I'm not moving. I can't tell you whether or not I've ever felt this bad before (I'm starting to lose track), but it was pretty darn awful!

Oh, also, to clear up a misconception expressed by a couple of friends, I am not getting steadily worse every day. Each bad day is worse than th elast, but sometimes I do still have better days in between.

Fire Drills

I'm starting to think there's a plot against me, that campus security plans fire drills when they know I'm feeling bad.

OK, not really; I'm not that paranoid. It does seem to me, however, that fire drills dependably happen on my worst day of any given week.

We had a fire drill this morning. I had just registered how horrible I was feeling about five minutes before that (just getting to the mental "Oooohhhh owch this hurts" phase), when the fire alarm went off. Fire alarms are disastrous for me. Sound causes vibration; vibration hurts. That particular sound is loud, sudden, and very rough vibration wise. So I jolt into worse pain than I was in before that, and then I have to get up and walk all the way down the hall and out of the building.

And it hurts like Hell.

And I'm just like, "Really? They couldn't have done this yesterday, when I was feeling alright?"

NOT a Superhero...

So apparently I still haven't managed to learn that I am not a superhero, that feeling good does not mean I can go forever, and that accomplishing everything all in one weekend probably isn't really such a good idea.

Every three or four months, I have what I call a "maintenance weekend". I wait until there are three or four essential items I cannot imagine living without, then take a Saturday night and make a run to Target. That same weekend, I try to vacuum my room as well as the usual neatening up, just so I can get all the painful chores out of the way in one weekend.

I am also trying to wean myself off my Lidocaine patches (major pain meds) because Dr. Sherry wants me off them completely by the time I get to Philadelphia. I decided the first step would be to cut them, cold turkey, on the weekends...and of course I had to choose my "maintenance weekend" to start.

This is not awful pain...yet...but it is definitely burning again (I was feeling good this weekend, whence the "superhero" mentality), and rapidly getting worse.

When am I going to learn that at least right now, I have definite limits, and it's better if I stay within them even when I don't feel like I have to?!

Hmm...[not sure what to title this]

OK, so I'm bored,and I'm curious, and this is something I've wanted to do for a while, so here goes.

If you read this blog regularly, and plan on continuing, please comment here and let me know who you are. If you're from school, a name will suffice; if I've never met you in real life, please tell me a little bit about yourself. Don't feel obligated to do this; I'd just loved to see what size group I've reached and who and where they are.

Guess What?!

Guess what I did today?!

I...VACUUMED!

Yes, that's right, I was feeling good enough to vacuum my whole entire room all by myself! This is the only time so far this year that I have managed that. (My room was also vacuumed once by one of the other girls in my dorm; thanks, "Rifka"!)

I VACUUMED MY ROOM!!! I VACUUMED MY ROOM!!! I VACUUMED MY ROOM!!!

I am so happy that I could manage it, and proud of myself for making myself try. :)

More Miscellaneanisms

[Miscellaneanism, by the way, is on eof those awesome should-be-words. It's miscellaneous, but as a noun!]

People in chronic pain get very good at waiting. I someitmes feel like I do nothing but wait, from the moment I get up in the morning. I wait for my brain to turn on. I walk very slowly, so I'm constantly waiting to get from here to there. I wait for my friends to notice my pain and offer their help and comfort. I wait for the inevitable, hard-to-answer quesitons I get every day. I wait for my pain to climb, and then I wait for it to fall again. I wait for something I can smile (or hopefully, laugh) at. When sitting voluntarily, I wait until I have to get up; when sitting involuntarily, I wait until I'm able to get up. If I forget how to walk or breathe, I wait for my body to remember how to function again. I wait for the day to end so I can crawl back into bed. My days are overshadowed with waiting for my current doctor to respond to my current question or call with news on my current treatment.

I always post about feeling bad a day or two after I start feeling better. I just can't make words when I'm feeling bad, but I need to write about it.

Oh: conversation with "John" from the other day when I forgot how to walk:

“Come on, Sarah. Pick a chair. Which chair?”
“I can’t. You don’t understand. I can’t move!”
“Alright then, do you want me to bring a chair over here and wheel you over?”
[very small shrug]
[pause]
“Well, I’m going to do that, because I think that would be best.”
[chair arrives]
[very long three minutes in which I manage about two steps a minute]
[frozen again two steps from chair]
“Sit down, Sarah.”
“I’m trying!”
“But…you aren’t going anywhere.”
“I know!”
“Well, when you sit down, I’ll wheel you over.”

Also: Why I hate coaches:

“Sarah, you gotta start changing out and doing some stuff, kiddo.”
“I can’t.”
“You can do upper body stuff, yes you can.”
“Not today, I can’t, not feeling like this. I would if I could.”
“…”
“You have no idea how bad I feel.”
“There’s other people that feel bad too.”
“NOT LIKE THIS.”
“If you’re gonna argue with me, you need to see Ms. "Smith" [school counselor].”
“I already do, every week.”“OK, then I’ll send her an email. And this is the last time you raise your voice to me, you understand?”

The Cruelest Teacher

People often compliment me on qualities that I know were created and/or strengthened in me through pain. I am never quite sure how to react. I certainly enjoy being complimented (who doesn't?), but I never have anyhting to say in response. Because I feel like it, in this post I will list what I have learned the hard way, why I had to learn it, and possibly how I feel about it.

1. Patience: People are often incredulou sthat I can sit in one place for four or five hours, stay in the same house for a week, or watch my flight get delayed for two hours without going totally stir crazy. But if you have to sit in one place for hours, you learn not to mind it. I learned early on that fidgeting doesn't help anything and in fact usually results in me hurting myself. It is far easier simply to retreat into my own imagination and wait for time to pass.

2. Focus: I can shut off 80 percent of my thoughts and focus all my brain power on the remaining 20 percent at will. Studying takes me less time than it takes other people because of this ability to "hyperfocu. I achieve higher levels of concentration while praying by shutting off distracting thoughts. I can memorize songs very quickly just by sitting down and focusing. I'm pretty sure this "hyperfocusing" is a survival skill. Pain is extremely difficult to deal with if one cannot learn to focus off it.

3. Self-acceptance: It's hard to watch yourself walk slower and slower every day, than start using crutches, than move to a rollator. It's harder still to feel yourself losing your powers of memory and thought as you operate in a fog, and it's even harder to accept that you regularly forget how to walk, talk, or breathe. But hating yourself because you're not the person you used to be only serves to make you more stressed and tired, which exacerbates the slowness etc. It is necessart to be gentle, to tell yourself, "Come on. One more step. You can do it. Good girl," not, "You idiot! You walked this yesterday, so get moving!"
A person must work in partnership with his or her body. When your body says it's had enough of something, you stop. Period. You'll be healthier and happier that way. If my body says, "I can walk without the rollator, and I can clamber over things, and I can go to the gym and hang out," I say, "OK, great! Let's go!" and we do. If my body says, ""I need to sit down, on the cold wet ground, right this minute, and I'm going to be stuck there for the next ten minutes," I sit down and wait out the ten minutes: right there, on the cold wet ground.

4. Living in the Moment: How many of us live our lives regretting the past and/or worrying about the future? I certainly used to. Pain has taught me that that is pointless. When you're feeling good, it helps nothing to worry about when things will be bad again; nor is it productive to replay feeling bad. "I felt bad yesterday; I'll feel bad tomorrow; but today I'm feeling good" is reason enough to rejoice and throw oneself into living.

If I were not going to get better, these lessons would not compensate and I would still feel as though I were missing out on a lot. But now that I know I can be cured, I'm glad for the opportunity to have learned these lessons.

You Know You Have RND (/RSD/CRPS/Fibromyalgia) When...

So I was reading a generic Invisible Disease list of this type on my favorite website, butyoudontlooksick.com. Most of it didn't apply to me, so I decided to write my own.

1. Paralysis, for about five minutes, is a normal occurence. You don't even get annoyed when your body stops working, and you wonder why everyone's looking at you funny.

2. Your "good" days involve more pain than most of your friends have ever felt in their lives.

3. You have named or anthropomorphized your mobility aid, because your constant companion clearly has a mind of its own.

4. You answer "How are you?" from strangers EXACTLY the same way every time...in fact, you have a memorized formula for answering this question.

5. Your coach "suggests" that you see the school counselor. (I see her every week anyway, but I hate coaches...)

6. Your friends don't fin dit unusual at all for you to grimace, whimper, and collapse, then when you finally get up, spend the next fifteen minutes shaking.

7. Even though you're barely in pain when you wake up in the morning, there's "barely" and "barely" and you can tell, before you put your feet on the ground, what kind of day it's going to be.

8. At one time or another, you have forgotten any of the following: how to walk, how to breathe, how to use a tissue, how to get ready for bed. (Actually, I forget that last one and have to take myself through the steps again almost every night.)

9. Getting cured two months from now is meaningless, because "the future" means crawling into bed tonight.

10. You're going to go make a list of your own now!

Because Blogging when I Should be Doing Homework is *Totally* Acceptable...

Note that "Should be Doing Homework" in the title. I should be doing homework. I really, really should. All I've done so far is finish my Chanson de Geste (epic poem in the style of the Old French) for English class, review for my Arabic quiz tomorrow, and finish up an algebra worksheet. I still have chemistry problems, two Hebrew worksheets, and studying for my history quiz on Friday.

So I should be doing homework, but I can't. I am just burned out, "fizzled" if you will. Never in my life did I imagine anything could hurt like I was today. Purely unbelievable...a nightmare of an existence...for hours and hours and hours, longer than usual. I'm also exhausted because I got to bed late last night...because I was too tired to move for half an hour after I decided I wanted to go to bed. Notice the irony here?

And, of course, the fire alarms in my dorm and the dorm next door had to choose tonight to go off twice...not once, but twice...so we had to vacate the dorm twice.

People who care about me, if you were ever tempted to comment here, tonight is the night. I need you.

Reactions to my Rollator, Rambling, and a Photograph

Everybody and their mother, so to speak, were interested in my health today, including people to whom I've barely spoken, who have never asked before. I guess I should have been prepared for this reaction to my rollator, but somehow I thought people would be in their own little worlds more. I did get one heartwarming reaction last night: one of the girls in my dorm saw me and said, "CONGRATULATIONS! High five! Do you like it?" That sums up my feelings exactly, so I was rather thrilled.

Then today I was telling "John" something about it, and happened to call it my "rollator." (I'd never used that word with him before.) He asked, "What did you call it?"

"A rollator."

"Is that rollator like alligator or rollaider as in it aids you?"

*slight confusion* "...R-O-L-L-A-T-O-R."

"Oh, OK, rollator. So, like a funny little gator."

*major laughter such as only "John" can produce* "I never thought of it that way."

I think from now on I will have to call the rollator my "funny little gator".

People were most enthusiastic over the brakes, with reactions ranging from incredulity to joy. I couldn't quite figure out what the big deal was, and finally asked a girl in my English class (she probably won't come up again, but call her "Elaine"):

"What's so great about the brakes?"

"What are they...for?!"

"Well, if you let go of the rollator on any surface that's even slightly sloped, and you don't put the brakes on, it rolls away from you."

"Oh, OK. So...they aren't to slow you down?"

"Umm...no."

I was explaining this syndrome to a girl who's never asked before, and got as far as the first part of the explanation: "Ordinarily, when you step on a tack, it sends a pain signal up to your brain--"

"And that's what you have?"

Umm...*what* is what I have? I have a brain...and I have a pain signal...but something's missing here.

And my all-time favorite rollator related conversation:

"Max": "There's Sarah!...What's this shmagiggy?"

Me: "This is a rollator."

"What does it...do?"

"It's more supportive than my crutches."

"Dave": "Well that was obvious."

The fact that I will one day be better, that there are a finite number of bad days, does not make them any easier to deal with one by one. Earlier today I felt like a cheese grater was being scraped over my feet as they burned, and while it's indescribably wonderful to know I won't have to live the rest of my life that way, fear of the future just never was a big part of my emotions on a bad day. A bad day is, "I hurt like Hell, I feel like crap, I'm exhausted, and I have to make it through the day."

I guess what I'm trying to say is that my "radar" on a bad day only extends enough to plan for the next three hours. If I can't imagine tomorrow, I certainly cannot imagine three months from now.

Oh, and because this blog needs a picture (and I need to go do homework, and this is a nice note to end on), here is a picture of my mother and me after Thanksgiving dinner (censored, as always):

The Future of This Blog

Now that I know I can get better--all the way better!--my world is expanding daily with new possibilities for the future, some of which (rollerblading, my first job, driving) I had completely forgotten about. Along with all that comes the wrenchingly joyous process of dismantling my life as I currently know it.

The biggest question is what to do with this blog. Blogging started as a way for me to vent at times when my firends couldn't stand to hear about pain anymore but I needed a listening ear; now, it is one of my favorite hobbies and soemthing I look forward to each day. I will no longer be able to call the blog "A Normal Teenage Life, with Pain", because I will be pain-free; "Normal Teenage Life" doesn't quite sound right either, because the courage, strength, and patience I have gained over this past year are far from normal. I'm thinking of a title along the lines of "Life after Pain". Life will continue; and I will be free; but I suspect that past, present, and future pain may remain at the forefront of my thoughts for a long time to come.

So. If I can figure out how to retitle this blog, I will do that after treatment; otherwise, see you on my new blog (again, after treatment): "Life after Pain"!

Curable

Yesterday I saw Dr. Sherry at Children's Hospital of Philadelphia...I can be cured. I am curable. Through an intensive physical therapy program (inpatient, six hours a day, seven days a week) I will definitely regain function and have a ninety percent chance to wind up pain-free. I will be able to run and jump and dance and play and everything I ever wanted...if I really get completely well I'll feel better than I've felt since sixth grade. This is amazing...and incredible...and everything I ever dreamed of. I can hardly wait. Thank You, God, for the miracles You have seen fit to work for me. Thank You.

Continuing my List...

7. Avoiding Triggers: This one is simplest to implement and hardest to remember! It's a lot easier to try to ameliorate pain once I'm in it than avoid it in the first place, but avoidance really is key. This is why I no longer socialize in the evenings (to my sorrow) or attend noisy school events.

8. Hugs: Yes, a big, warm hug from someone I love genuinely can make me feel better.

9. Writing: Writing about the pain certainly does not let me focus off it, but it does diffuse anxiety and tightly wound-up nerves, which in turn decreases the pain a bit.

"This miracle God gave to me / Gives me strength when I'm weak..."

[Title from "In my Daughter's Eyes"; don't know the artist]

I love my rollator...it actually keeps me feeling good! I find the scale of one to ten inapplicable and useless, but if I used it I'd rank myself at a three or four right now...consistently. My dad took me shopping for a new coat today; I used a wheelchair around the store and managed to keep myself feeling good. Hey, "Dave", "John", and anyone else who carries me: I'm not falling down anymore! (At least until I get worse again, but we won't think about that.) You may never have to carry me again! HOORAY!

In other news, I am enjoying being home and relaxing. I miss all my school firends terribly, and want to be back with them. I will, however, be meeting up with one friend (haven't seen her for three months) on Wednesday, and another (haven't seen her for seventeen months) on Friday, so it's all good and I'm very excited.

I forgot what it was like to feel this good...thank God for rollators.

While I'm in this good mood, I am starting a project that will hopefully carry me through the hard times as well. I am starting a list of things that help my pain; by the end of the year (12/31/08) I hope to have 100 coping strategies listed here.

1. Lying Down: listening to music, reading, or sleeping, particularly if my feet are on top of the blankets, not under them.

2. Taking off my Shoes: This is the simplest one, and the one I forget most often. Wearing shoes actively hurts my feet; taking them off removes that particular trigger.

3. Theater: Since July, I have not felt better than I did while I was in the play.

4. Having Fun with Friends and Not Talking about Pain: Distraction always helps; fun distractions are even better.

5. Laughing Really Hard: Laughter releases endorphins, which always decrease pain. On occasion, I've managed to laugh myself out of pain.

6. Self-Hypnosis: This one is complicated. As I go deep into myself, my pain gets worse before it gets better; it has to be low enough to begin with that I can stand for it to get worse, then relax enough to make it better. So this one only helps up to a point. Since it definitely helps somewhat sometimes, however, I am including it here.

Loving my Rollator!

I just started using my Dad's rollator (from when his arthritis was bothering him years ago...it stopped bothering him, and he's now one of the only two able-bodied people in our home...now it's my rollator!) in place of my crutches, and I love, love, love, love, love, love, LOVE it! Think I love it? I DO!

A rollator is like a walker, with three "corners" instead of four, big wheels, and hand brakes. It can collapse partially to fit through small doorways, and is significantly more supportive than crutches. I can't do stairs with it, but since I usually prefer to crawl when forced to use stairs anyway, that's not really an issue.

I LOVE my rollator; if I use it all the time, I can actually feel halfway decent, which is GOOD! I may never collapse again, meaning "John" and "Dave" would never have to carry me again, which I'm sure they'd like and I'd like too. This is AMAZING; I never imagined feeling this good again before treatment. I LOVE, LOVE, LOVE my rollator! Yay, FREEDOM!!!!! *metaphorically running around in crazy circles right about now.*

(Follow the link below to see a picture of a rollator, if you're interested.)

http://www.ionmeds.com/Winnie%20go%20light%20aluminum%20Rollator.htm

Home for Thansgiving

The airports and planes actually weren't as hard to manage as I'd been expecting. I was certainly in major pain by the time I made it through security, but I had no one next to me on my first flight and I was able to just stretch my feet out (OK, actually curl up across two seats) and rest, which was nice. My four hour layover in Detroit meant I was sitting for a good long time, so long that I even managed to get up once or twice and walk a long way to find a newsstand to get something to eat. I did have to have my feet down during the second flight, but ended up in a very interesting religious discussion with my seatmate. That conversation distracted me enough that I didn't suffer as much as I would have otherwise, and in fact was feeling much better by the time I got off the plane.

By the way, I really dislike a certain type of airport personnel. I guess I should say I dislike this type of person, but I never encountered more of them at once than I did in the airport yesterday. I'm talking about the kind of person who talks to me more slowly, more gently, more sweetly, more loudly, and closer to my face than they would talk to others, just because I'm disabled. There is nothing wrong with the brain connections that have to do with me understanding speech. I realize my pain stems from a brain connection, but that is the only thing wrong with my brain. I can understand everything everyone says. Always.

In keeping with the original purpose of this blog as how I manage my life...here is a segment on living in a house with stairs.

The steps in my house are narrow and steep and hard to go up and down. I certianly don't want to be doing that more than once or twice a day, at most. So, I get up, get dressed, and put everything I need for the day in one plastic bag and one tote bag. I come downstairs with my bags, and I don't go back up for the rest of the day. How to handle stairs? Avoid them.

Going Home...

I will shortly be on my way home for Thanksgiving, and I just have to say that I hate airports. Airports are almost as bad for me as a school day, and they happen all at once, so they're harder.

How different my experience of going home for break is from other people's. Others can pack, clean, and study the night before they leave, take their final the next day, hang out with friends, and head home--and still have energy to be excited. I packed yesterday, was too exhausted to study properly, and fell asleep triyng not to scream as my pain jumped around; cleaned today, and was too exhausted to focus on my final; and have spent the last hour sitting on my bed desperately trying to regain some energy so I can manage the airport.

Ever wonder why I'm not hanging out with my friends nearly so much anymore? Yeah. This is why.

Happy Thanksgiving, everyone!

Random Meme

This came from someone else's blog; since I'm not really in a creative mood today, I thought I would just blog this.

What I was doing ten years ago (I have a feeling this was meant for somewhat older people, but here goes anyway):
In November 1998 I had just started Kindergarten. My family had moved to Binghamton, New York eight months before, one month after my fifth birthday. My favorite activities at the time wer eplaying with my dolls and my dollhouse. My two-year-old brother liked to come in my room and take my things. I had a very early bedtime, which made it hard for me to fall asleep in the summer when it was still light out. I didn't like being in the basement at night. (Still don't particularly, unless there's something I want to watch on TV.) I enjoyed playing outside.

Five things on my to-do list today:
1. Study for my Algebra final.
2. Study for my Bible final.
3. Call home and talk to my mom.
4. Retrieve my laundry from upstairs (this one might or might not actually happen today).
5. What, I'm supposed to have time left?! It's finals week! Sew a bit, I suppose.

Snacks I Enjoy:
1. Ice cream
2. Chocolate
3. Potato Chips
4. Crackers (Wheat Thins, Triscuits, Saltines...)
5. Cheese

Things I Would Do if I Were a Billionaire:
1. Finance my younger brother's education.
2. Sponsor a child through WorldVision.
3. Create a product line to raise RSD awareness.
4. Travel to Israel.
5, Finance my own education.

Five of my Bad Habits:
1. Picking my fingers
2. Crying too easily
3. Wondering whether or not my friends actually like me
4. Procrastinating when I should be studying (read: right now)
5. Threatening to hit people with my crutches ;)

Five Places I Have Lived:
1. Houston, Texas (born there)
2. Youngstown, Ohio (17 months-4 1/2-ish).
3. Youngstown, Ohio (different house, 4 1/2-ish-5 years)
4. Binghamton, New York (5 years-14 1/2)
5. Greensboro, North Carolina (present)

Five Things I Love to Do:
1. Act
2. Write
3. Sing
4. Sew/Knit
5. Read

Five Things that Bug Me:
1. Judgmental people
2. Neat freaks
3. My bad habits
4. My past
5. My pain

Five "Little Known" Things About Me:
1. I had a pretty horrible elementary school life. As a result, I only fully trust one person (outside my immediate family) in this world, and I'm not even completely sure about him.
2. Plans from "before" (i.e. before pain): I wanted to play basketball for AHA, and someday join the military.
3. My absolute most favorite person in the world ever is my younger brother, "Leo".
4. I do curse, much more often than I should.
5. I once wrote a "porno/romance novel/story of psychiatric illness", but I never finished it. It was just about the most perverted thing I could imagine at the time, and quite fun.

Keeping Busy

(Please note: I gave this entry the most neutral title I could find. Depending on what kind of person you are, it could also be titled "Productivity", "Dawdling", "Staying Sane", or "Going Insane", just to name a few.)


Situation: For an entire weekend, almost every step you take causes an intense, flesh-eating burning sensation. This is actually better than the last school week has been, but it is by no means good enough to convince you to leave your room for anything unnecessary. By Saturday afternoon, you are bored, claustrophobic, and irritable. What do you do?


If you spend time feeling sorry for yourself, leave this blog.


If you find a creative solution, read on.


I am majorly good at creative solutions. Mine was in two parts:


1. Spend four (Four!) hours on Saturday rereading the entire 220 page Jewish History textbook in preparation for Monday's final. Do not just skim it over; reread the entire thing thoroughly, such that you have a firm grasp of the material and understand how it all connects. Spend three (Three!) hours on Sunday rereading all relevant parts of the European History textbook. Again, read thoroughly and slowly, such that you understand the material and a vague historical overview. By this time your brain will be dead; start praying that you will pass your finals.


2. Spend three to four (can't exclamation point this, because I don't know exactly how long it actually took) making...a tote bag. This is not as random as it sounds, I promise. I have been wanting a tote bag that I can hang from the handle of a crutch for a long time. All the ones in stores are expensive, and who wants to sanction a free market (read: slave labor) economy anyway? I am, however, going home for Thanksgiving in a week; I need something to use for my carry-on in the airport.


Below is a picture of the finished tote bag. All seams are double-sewn. (That may or may not be the correct, technical term, but I bet you can figure out what it means.) The strips that comprise the handle are sewn together with a row of running stitch, then a row of whip-stitch, and finally another row of running stitch; each end of the finished handle is attached to the tote the same way. The bag close with a row of four small buttons. (What can I say? I accidentally bought tiny buttons.) Inside is a "secret" pocket. The finished tote bag:

How to Dispel Self-Pity

Self-pity is an absolutely useless emotion. Period. Useless. There is nothing wrong with recognizing that one is in difficult circumstances, and allowing oneself to feel sad and angry at times is necessary and healthy; but wallowing in it never did anyone any good. Here is how to get rid of it, at least what works for me:

1. Identify the emotion: I am almost never able to sit back and declare, "I am feeling sorry for myself." More often, I will find myself crying more easily, feeling more irritable, sleeping more, and randomly getting angry at people. I know that even if I think I have reason to be angry at someone, I am usually actually indulging in self-pity, because I don't get angry easily.

2. Figure out what one is missing: Tonight, I was feeling trapped. I haven't felt good enough to leav emy room for anything fun in days; I'm tired of being trapped here. Spend enough time in any room, no matter how lovely, and you start to feel claustrophobic; and I'm not exactly the neatest person on Earth to begin with, so my room is far from lovely.

3. Experience/Replace what one is missing: I did in fact leave my room for about five minutes and take a very short walk, but it wasn't enough. Now the question came: What to do to make myself happier in current circumstances? You see, fighting a situation only makes it worse. I needed to accept and make the most of being stuck in my room.
I really enjoy sewing, so that's what I decided to do. I would make something. And, to make it even more fun, I would watch the 1939 version of "The Little Princess" with Shirley Temple (I found it in fourteen clips on Youtube an dsaved them all) while I did it.

4. Schedule the chosen activity: I find it best to do what will make me happy as soon as possible; the self-pity doesn't tend to go away on its own. I had planned to study for two finals today, but I had already spent the day reading for Jewish History and my brain was pretty much dead anyway. So I quickly finished my book, went on Youtube and found my movie, and started sewing.

5. Keep going with your projec tuntil you feel better: This is most important. It took me at least an hour before I stopped feeling trapped.

Am I still feeling confined? Sure. Do I want to be able to hang out with friends? Of course. Did I want to tonight, and did I miss being able to? You better believe it. But at least now I can fall asleep with a nice memory of something rpoductive, rather than being left with memories of killing time and growing more and more irritable.

Aaaaack.

Aaaack. Finals start Monday. Aaaack. I haven't been able to study because I felt too icky this week. Aaaaack. I'm not prepared. Aaaack. Aaaack. Aaaaack.

And having my feet burn indefinitely isn't helping anything, either.

Informative Link

Finally, FINALLY, I found a page that lays out all the information on RSD in an accessible, easy-to-read format! Do read it; it's informative. I didn't know all the information on this page. It also answers some of the questions I get asked most frequently.

http://www.awinninglifewithrsd.com/id15.html

Trapped by my own Body

I was in so much pain today I literally collapsed: we're not talking just fell; no, I was lying on the ground with my eyes closed. It must have looked pretty dramatic, because "John" thought I was dead or unconscious or something and started yelling for help, at which point I opened my eyes and spoke just enough to let him know I was conscious. I could tell he was pretty scared; sorry about that, "John"!

In that kind of pain, I literally cannot respond to anything. I can process everything going on around me perfectly as normal. I know who is speaking to me, what they are saying, and how I am supposed to respond; my sense of humor has not changed and I laugh (on the inside) just as easily; I see and remember everything I normally would. But I do not have the energy to respond to people. I cannot talk or smile or even look at people without tremendous effort. I am pretty much just stuck, trapped inside a body that cannot move and will not respond to the world.

Furthermore, I cannot trust any of the messages I get from my body in that state. I cannot know whether I am hungry or thirsty, cold or hot, in or out of pain; about the only thing I can be sure of is whether or not I have to go to the bathroom, and responding to that one requires walking down the hall, which I cannot do when I feel like that.

I understand that this afternoon was scary for my friends. But picture how much scarier it must have been for me.

In future, for those of you who want to reach me through that kind of pain should I end up there again (I am certainly not insisting or even encouraging you to go out of your way to do so, but I could tell people were trying today and really wanted to reach out to me), here's how. (Again, this is for the kind of pain where I can't even move my eyes to look at you.)

GENTLY, very GENTLY, touch me and say something. Move into my current line of vision so I can see you. Hugs are always welcome, but a lot of people talking/surrounding me at once is overwhelming when I'm feeling like that.

10 Things

Saw this on someone else's blog I was reading (the question, that is; the answers are my own), and thought it was interesting.

What are ten things you've done that most other people probably haven't?

1. Begged my parents for a pair of crutches, then a wheelchair.
2.Force fed myself because I was too tired to eat.
3. Memorized "Battle Hymn of the Republic".
4. Written sonnets, sestinas, free verse, and prose on a fairly regular basis.
5. Done my laundry by crawling around.
6. Driven an hour and a half to see Doctor Number Five, who couldn't help.
7. Set off the metal detector at the airport by touching the sides. (What if you're just really fat?)
8. Been to the Metropolitan Opera in New York City four times: La Boehme (Boheme? Boehm?), Carmen, Marriage of Figaro, Tosca.
9. Learned all of Latin I (a year's worth of high school Latin) in three and a half weeks one summer, then forgotten nearly all of it.
10. Walked around school singing as loudly as I please.

RSD Videos

One of my biggest "pet peeves" regarding RSD (other than the pain itself) is the fact that no one I love, apart from my mother, can understand what this is. So, in the name of awareness and answering questions, here are links to illustrative Youtube videos. You may notice that the second video says, at the end, "also known as complex regional pain syndrome". CRPS is the more correct term and the one used by the medical community. Yes, it does mean "pain that does not stop, in one area, that we don't understand". I'm sad to say that's an actual diagnosis of an actual syndrome.

http://www.youtube.com/watch?v=S1Qn5rus4Gg

http://www.youtube.com/watch?v=CNX33BOpWBA

http://www.youtube.com/watch?v=iJu4DOPbrT4

These two are a Discovery Health Segment (watch both) about RSD.

http://www.youtube.com/watch?v=7OgAzmgX28w&feature=related

http://www.youtube.com/watch?v=5oNxBe6LiLI&feature=related

This is actually about Ehler Danlos Syndrome, not RSD, but the general message still holds.

http://www.youtube.com/watch?v=4H4MCI55Y9Q

Why the usual treatment strategies don't work for chronic pain:

http://www.youtube.com/watch?v=kmdYt0OAJbs&feature=PlayList&p=5E942714B67E8A62&index=2

These next two are about pain in general.

http://www.youtube.com/watch?v=QIfohCubP88&feature=PlayList&p=5E942714B67E8A62&index=0

http://www.youtube.com/watch?v=qii33KVIl2g&feature=PlayList&p=5E942714B67E8A62&index=1

Enjoy (?) Watch any or all of them, or ignore this coompletely: your choice. Just to reiterate, so I clear up any confusion, RSD and CRPS are the same thing.

Torture

I will never, never ever, be able to find words for what I went through today; it was Hell, a firey torture that by definition must remian locked inside forever. This poem doesn't even come close, but it's the best I could do.

Heartbreak
I start off bright-eyed, just like every day;
But this day I am doomed to sob and scream.
The only thing that I can do is pray,
And hope that someday, I wake from this dream.

I watch them sink one more triumphant shot;
Cradled by the hard floor, I am alone.
I feel the fire rising, burning hot;
It’s not enough to shiver. I must moan.

The little girl in me is knocking hard;
She wants to be let loose to run and shout.
I feel her bang her head against the guard;
Believe me, if I could I’d let her out!

“Mother!” I scream, as I succumb to pain;
“Hurts!” is my cry as I seek out God’s name.

Sign my Petition

To ensure that it does not get buried, I plan on posting the link to my petition once a month. Here is the November reminder:

http://www.PetitionOnline.com/a1s9d4f6/petition.html

Please sign! It takes two minutes at most. I am hoping to get 50,000 signatures (I'm well aware that there are only 7 right now), at which point I will send it to the US Surgeon General.

Hurts!

I hurt so much tonight...but in a weird way, I'm completely dissociated from it. My first clue that I was hurting enough to take notice of was when I slumped involuntarily from kneeling to sitting while watching a basketball game.

Speaking of which, no more watching basketball games. I'm upset because I have both male and female friends who play, and I had promised myself that I would see one girls' game and one boys' game. Today was the girls' game; I was really hoping to be able to watch the boys as well.

Why am I so frightened of this pain? OK. I spent large portions of the game curled up on the floor. When I got on the elevator after the game, I actually screamed. Walking out, I fell to my knees, and couldn't even sit because my body wouldn't move. People carried me back; at one point my hands slipped and I stopped holding on. I couldn't even eat dinner because the taste would have overpowered me. I forgot what I was doing while washing my hands in the bathroom. Oh, and at one point tonight, the spaces in between my toes were hurting. Spaces are not supposed to hurt; that's kind of why they're spaces.

"I have read a fiery gospel writ in burnished rows of steel..."

(First off, how does one spell "fiery"? F-I-E-R-Y? F-I-R-E-Y? I think the first way is correct, but it should be the second way.)

I thought this title appropriate for sliding back into pain. I had a really great weekend physically, adn was able to visibly remind everyone why they are friends with me in the first place. My infectious joy at living came back; I felt good enough to crunch through leaf piles and shower standing up; and I had this boundless energy that needed to be expressed through (loud) song. In short, I became the person I was before pain.

But now I'm sliding back into it. It's not bad pain, yet, but I always forget the sensation when it goes away, and then I have to get used to it and learn to process/ignore it all over again. Three days makes a difference and I've grown unaccustomed to the endless burning...today was just a constant, "OwWwWw..."

Also, today was the anniversary of Kristallnacht, otherwise known as the November Pogrom, usually considered the official start of the Holocaust. We had a nic ememorial assembly (better than last year's) as a school. We listened to a dramatic reading describing the night, and I broke down crying at the section about an angry mob attacking a hospital for "crippled children".

You see, I am a "crippled child". By the Nazi standards, I am a "useless eater"; that's what they would have called me and then I woul dhave been dead. Sixty percent of my family would have been dead as soon as we arrived at the camps, if not before; three fifths of us would have stood no chance of survival.

Am I a "useless eater"? What makes a person useless?

Closing Night

Tonight's performance was not as good as last night's. There were more mistakes, some of which were definitely noticeable to the audience. In order:

"Dani" and "Stuart" went to their places too soon. This was partly my fault; we weren't sure whether the lights were down or not, I didn't want them to be late (that happened at the dress rehearsal) and I told them to go--while the house lights were still partially up.

I was tense when I came on, both because of the previous screw-up and because it was the last night, as well as because the lighting was different and I could actually see the whole house. I didn't screw anything up, but my monologue wasn't as good.

"Dani" and "BJ" came out too early, which meant they had to come on too early, which meant they had to surpise "Lisa" by banging on the cube before she had a chance to sit down. She covered it, thank God...but I be tit looked awkward.

I came up the step too early, again.

"Muggy" dropped her line, "Everybody fails math," but Stuart still said his, "...and for your information, I got a B+ in trig." I am sure the audience was wondering how that connected too anything.

All that being said, I had a whole lot of fun tonight (I think I just hate opening night) and I'm very sorry that it's over. There had better be another play I can be in, soon!

Opening Night

I really think last night went well, as performances go. I was a bit distracted and upset because someone I love wasn't there (turns out he got the time wrong and thought he'd be able to come tonight), but oh well. I heard the audience start whispering in the scene where I broke down crying, and they all turned expectantly towards me whenever I came onstage.

Did I notice mistakes? Sure. "Dani" (I am using names of characters for this blog entry) missed a couple lines of her first monologue, and relied too heavily on the phrase "funniest thing you ever saw" to hang things together, when it was only supposed to be there once. She also had a line, "Why don't you go back? Eat a pizza for us!" That she just dropped. She and "Stuart" screwed up their hugging scene. "Muggy" spoke much too fast. I came up a step too early. Are these mistakes the audience noticed? No, of course not. (Except fo rthe stair, which was still probably not noticed.) Hence they do not matter. People hav ebeen complimenting me all night and this morning.

Now...all that being said, I think I honestly prefer rehearsing to performing. I act because I love what it does to me inside; it's for me, not for anybody else. Audiences throw me. However, performances are worth it because rehearsals are so much fun.

One more show tonight!

"As he died to make men holy, let us die to make men free..."*

What would you die for? There are no answers, just a self-administerable quiz to make you think. I've been thinking about this recently. (Please be aware that not all of the self questions apply to me.) There are five categories, with five questions each. Those of you who, like me, want a scorin gsystem, that makes each question worth five points. Ten bonus points if you can answer the teaser at the end such that it stops driving you crazy.

SELF:
1. Would you kill yourself if you knew you had to be in pain for the rest of your life?
2. Would you kill yourself if you knew the pain would eventually kill you, anyway?
3. Would you kill yourself if the Nazis were coming for you?
4. Would you kill yourself if you accidentally killed someone else?
5. Would you kill yourself if you murdered someone else?

LOVED ONES:
1. Would you take a bullet for a friend? For a family member?
2. Would you throw yourself on a grenade/landmine for a friend? For a family member?
3. If your friend were in constant pain, and it woul dstop if you died, would you kill yourself? What about a family member?
4. Would you be willing to burn to death for a friend? For a family member?
5. Would you be willing to drown for a friend? For a family member?

COUNTRY/NATIONALISM:
1. Would you go to war, knowing you might be killed?
2. Would you undertake a dangerous spy mission only you could complete, knowing you would probably be caught and killed?
3. Would you undertake a (for the sake of argument, completely ethical) necessary suicide mission for your country?
4. Would you die under torture, rather than give up your country's secrets?
5. Would you take a bullet for the president?

RELIGION:
1. Would you let yourself be killed, rather than "admit" your God is false?
2. Would you die rather than break one of the Ten Commandments?
3. Would you die rather than convert to another religion that worshipped the same God? (think Judaism to Christianity, or vice versa)
4. Would you undertake a (onc eagain, for the sake of argument, completely ethical) suicide mission for your religion?
5. Would you go to a warzone or other dangerous situation to minister to those of your religion who were cut off from leaders?

MISCELLANEOUS OTHER CAUSES:
1. Would you die if it meant a cure for cancer?
2. Would you die if it meant there woul dnever be a war again?
3. Would you die if it meant starving children in third world/developing countries would suddenly start thriving?
4. Would you die if it meant an end to the underground slave trade?
5. Would you die if it meant animal testing would stop?

TEASER:
Assume it is right or moral or obligatory to die in order to stop a loved one's suffering. Assume it is right or moral or obligatory to love yourself. Are you obligated to commit suicide in order to stop your own suffering?

I scored a 45. Apparently I am the self-preserving type. Oh, and I can't figure out the teaser, either.

*A note about the title: This title is a line from "Battle Hymn of the Republic". I am aware that the song is a Christian hymn about the Second Coming. It is also the most powerfully beautiful song I have ever encountered, and has approximately fifteen lines that are good for blog titles.

Tech Week

Most of my friends are not in theater, cannot understand my panic, and probably don't want to hear about it anyway. Hello, faithful blog readers.

We (the school play, "Pizza with Shrimp on Top") open in three days. Today is our last rehearsal. Saturday night is our first performance. We are not ready.

Scratch that: We the cast are ready. Everybody is automatic on most of their lines. We have almost memorized most of our blocking, and it looks good. We no longer miss cues. We are as ready as we can ever be.

But. One actor keeps staring at the lights, smiling vacantly, and dropping character. Our guitar player forgot to put the clip on his guitar yesterday, and I could not get my music cue. (I sing quite high, as human voices go.) We have no stage left staircase, which means all stage left exits are currently being done stage right, which means we have far too many people using our stage right staircase. I need to remember to keep my chin up. My crying scene is only good enough sometimes. (It's good always, but not good enough.)

Half these things have already gone wrong, which either means they definitely will go wrong again or guarantees that we can stop worrying about them. But the other half...

Oh, tech week, how I love thee!

"The Whole World Lit Up"

"He has sounded forth the trumpet that shall never call retreat;
He is sifting out the hearts of men before His judgment-seat;
Oh, be swift, my soul, to answer Him! be jubilant, my feet!
Our God is marching on!

"Glory! Glory! Hallelujah! Glory! Glory! Hallelujah! Glory! Glory! Hallelujah! His truth is marching on."

(Title from a Blue Fringe song; opening lines from Battle Hymn of the Republic)

Thank You, God...Thank You, God...I feel so much better! I still hurt a lot, can still feel objects four inches away, but that's as far as it goes! I am awake, and focused, and alert, and present, and alive; I have hours of homework tonight and I am fully confident (albeit somewhat delusionally) in my ability to finish it all. I can love, and I can laugh, and I can care that Obama just won the election! Items that only rank four or five on my "to care about" list are actually getting attention! Scratch that; item six is getting attention! Item seven is getting attention! I can care about seven issues all in the same day!

(For the record, the list of things to care about contains, in this order: Theater, Schoolwork, Rest/Health, Friends, Politics, Songs/Singing, Craft Projects. On a really bad day [think Thursday-Monday], I only manage to care about the first three. Yesterday I managed the first five. Today I can make it all the way through the list!)

So. Quotes from songs:

"I can see clearly now; the rain has gone. / I can see all obstacles in my way. / Gone are the dark clouds that had me down. / It's gonna be a bright, bright, sunshiney day!"

"תודה על כל מה שבראת.

תודה על מה שלי נתת.

על יום של אושר,

תמימות ויושר,

על יום עשוב שנעלם"

"You gotta stop, and smell the roses. / You gotta count life's many blessings every day. / You're gonna find the way to heaven is a rough and rocky road, / If you don't stop and smell the roses along the way."

"...saw a flash in the sky, and the whole world lit up."

"Sing unto God, sing a new song, oh, sing praises to God, give thanks with all of your heart; sing praises unto the LORD thy God...Sing unto God, sing a new song, oh, sing! Sing unto God, sing a new song, oh, sing! Sing unto God, sing a new song unto God! Sing unto God, sing a new song unto God!"

Thank You, God; I have left the ranks of the living dead and rejoined the ranks of the living! (Of course, I now have massive cleanup to do on relationships, schoolwork, etc.)

Breaking the Cycle?

I got in an extra hour of sleep last night, bringing my total amount of sleep from about seven hours to nearly eight hours, and it has made such a difference! I was not in such a "fog" this morning: still very tired but able to function. My pain level was more even throughout the day, which of course meant I felt worse in the morning than usual, but when I crashed it was slightly less awful, for slightly less time. I'm still in a lot of pain most minutes; still exhausted, drained, and sluggish in my thinking; but if I can continue to get extra sleep (doubtful), I may not need to take a day off from school next week. As of now, I am too drained to be properly excited about this, but I feel better, so much better! I can't wait to tell "John".

In other news, it's tech week, so naturally I am busy indeed. I love tech week--so much excitement and panic!--but it means I have two hour rehearsals, then dinner, then I call my mom, then study hall, then I get ready for bed, and then if I'm lucky I have a few minutes to work on a certain someone's Hanukkah surprise. I find I no longer have the energy to care so much about politics; pain has forced me to pick and choose the causes on which I expend emotional energy, and the ones that are right in front of my face come first. So I currently care about theater, schoolwork, and resting, and most other issues escape my notice. If any of my friends have been feeling neglected, I'm sorry.

Downward Spiral

In the hopes that I will be able to start on my homework after venting a little (we have an hour and 28 minutes lef to study hall, and counting down), I will describe my rather annoying daily "pain routine".

I seem to be caught in a downward spiral touched off by trying to take the PSATs with my feet dangling. (Those of you who like to take care of me, you can stop saying "I told you so;" lesson learned.)

Pain is exhausting in and of itself, and seems to linger now far into the night; I believe the quality of my sleep has been compromised. I wake up evrey morning in a fog of exhaustion that makes thinking and even moving difficult. This fog lasts until lunchtime-ish, and to add to the annoyance, it makes it difficult to proces spain properly, so I hav eissues judging where my limits are.

About half an hour after lunch (yay for delayed reaction), I am gradually slammed into an unbelievable amount of pain. Just to recap: my pain BURNS, as if my feet are being immersed in fire. That's a description of normal-bad. The kind I'm describing now feels like my feet are melting, or exploding, or being torn off and burned, or burning with out skin so the fire is directly licking flesh. This pain continues to climb until I come back from school, after which it slowly subsides.

By evening I am exhausted again, and it takes effort to get my work done.

If anybody who has daily contact with me is reading this, it would help tremendously if you stopped asking whether I was OK. I am never OK; if I look not OK, I am negative OK. OK? I absolutely appreciate you're concern, and I am happier than words can say to be loved so much by so many.

One hour and twenty minutes to go...homework time. (?)

Picture from the Sadie Hawkins Dance

Because this is the internet, and it is not and never will be fully safe to post pictures, I have added a black box over my date's face. Otherwise htis photo remains unedited.

The World that Hurts

I wrote this poem just now; it's meant as a dialogue between a "normal" teen and me. Yes, it was based off an imagined conversation with a specific friend, but most of these interchanges have not actually taken place.

The World That Hurts
“The waving grasses, lush and thick.”
(The needles that slice past my feet.)
“The loud music that makes us dance.”
(The sound waves—HURT!—wash over me.)
“High school basketball: school spirit.”
(Huge booms that cause me pain for days.)
“The gorgeous woods dressed up for fall.”
(It hurts even to think of them.)
“Whatever you want; follow your dreams.”
(Oh, how deeply I wish I could!)

Dignity--A Meaningless Word?

In this post, I want to explore the word "dignity", what it means and how it applies in the life of a disabled teen.

Let me start by saying that nothing, but nothing, is too undignified if it makes my life easier. I don't just mean taking the elevator or using crutches; I mean sitting on the floor of the shower, crawling down the hall and up the stairs to do my laundry, letting people carry me.

If dignity can be equated with self-sufficience, however, then it is more dignified for me to do my laundry crawling than for me to ask someone else to do it. Problems arise when I cannot get down the hall to the bathroom, and someone offers to carry me.

Which is more dignified? Not showering? Refusing their offer and desperately trying to crawl, whimpering all the way? Or saying, "Yes, thank you; that would be so helpful!"?

"It's not fair to the other girls in the house..." So is it fair to me? Forget being fair to the person who (insisted she) carries me; is it fair that I need carrying? Fairness is definitely an obsolete term in my life.

Disabled people need some extra help. Period. If I can't get down the hall to the bathroom to shower before Shabbat, and somebody offers to carry me, I really don't have a whole lot of choice. Sometimes I wish people could be me for just one day, just so they could begin to understand. Just imagine being fifteen and needing help with just about everything: getting around, carrying things, getting food.

I am not as self-sufficient as I'd like to be, and maybe it isn't fair to the people who (offer to) help me, but it sure as heck isn't fair to the person trapped in this body. It sure as heck isn't fair to me.

What a night!

OK, so tonight was the Sadie Hawkins dance, and it was quite possibly the most fun I've had in thirteen months.

I went with a boy whom I will call "Will". I spent twenty minutes before the dance getting dressed etc.; one girl did my hair and another did my makeup. We were all taking pictures when "Will" showed up at the door. My fellow said no boy was taking one of her girls to a dance without coming in and getting his picture taken, so we did that, then went to the dance. We hung out for a while, but it was lame, so we went on a hayride. It was still lame, so we sat and talked, then went on another hayride. By the time we came back, our various friends were there and the music was actually halfway decent (I guess they gave up on the country/farm theme).

I managed to dance through four songs. For the fast ones, I toned down the leg motions about ninety percent, and danced on crutches. For the slow ones, "Will"'s forearms became my crutches, and we danced together. In between, I sat and rested and talked to "John".

At one point, I was sitting and resting, and suddenly all the dancing caught up to me. I felt the smile slide off my face as pain surged, and I dropped my head onto "John's" shoulder. He patted me and said, "Stay awake, Sarah."

I looked up and said, "If I were smart at all, I'd go back now."

He understood that what I wanted was confirmation that I wasn't just cheating myself of something, and said, "Go back. Don't cause yourself pain needlessly."

So "Will" and I left together. As we were walking back, I said, "Should we kiss or not?"

He responded, "I don't know."

"Well, let's sit down and talk about it." (We sat.) "If we kissed, would you wake up tomorrow feeling regretful or happy?"

"I don't know. Last time I kissed, I didn't really go to sleep."

"Would you mind kissing me?"

His look softened, and he said, "No."

So we kissed. And then we kissed again. And then we walked back to his house and kissed again. And he says he thinks we can work out in a relationship; it will just take some time.

I'm so glad I waited for my first kiss. Everybody always told me it would be gross no matter what, and I maintained that with the right person, it wouldn't be. I was right. I mean it was wet and sticky, but that was just par tof the experience.

I randomly feel like crying now, but I think I'm just tired. I will NOT start questioning the validity of this relationship; whatever it was was real at the time.

Too Young to be so Old and Tired; Too Soon to be Ensnared

That title, by the way, is the first in my series of "Song lyric titles": titles written by me that sound like they should be song lyrics. If I get enough, maybe I can combine them into something.

I was in so much pain earlier today: ten times worse than the last time I blogged specifically about my pain level, which was ten times worse than anything else. So I felt about 100 times worse than normal. I literally thought I was going to die; not "kill me now", but "I could drop dead any second and I haven't said good-bye to anyone; I don't want to die". I think my friends think I do that for dramatic effect; one of them said to me, "Sarah, if you say that again, I will do it." To which I (of course) responded, "Please do," and then everyone thought I was suicidal. Uggh. I'll never be able to make them understand, will I?

I don't know what kind of sadistic game God thinks He's playing with me, but whatever it is, He's won, hands down. I don't care what I have to have instead; I want out! (If I could have thought about it at the time, I now know the level of pain that would make me wish for quadriplegia.)

I wrote the following poem while I was sitting there, because...well, as the title says, just in case. I literally, honestly did not know whether I would survive long enough to come out of that.

Just in Case
If I drop dead, bury me on campus.
If I die, remember this is home.
I love you all; don’t ever forget me.
If I die, it was through trying to survive.

God in Your mercy, stop before it kills me!

P.S. "John", if you're reading, thank you for everything today. I was truly so out of it I can't remember what I said; I hop eit wasn't anything too offensive.

Pain Patient Partakes of PSATS

OK, so we all (freshmen and sophomores took the PSATs today. First, an anecdote that I just think is funny:

My number one rule for test taking is one pencil is never enough. It just isn't. Either it breaks, or you lose it, or it doesn't turn out to be a #2 pencil at all, even though it looks just like all the other pencils in your room, which are #2. So one pencil is never enough. Bring two.

My number two rule for test taking is two pencils are never enough. Guaranteed someone else in the room will be having major pencil issues. Either they forgot to bring pencils, or they only brought one which got lost or broken, or they forgot to sharpen their pencils, or their pencils aren't #2 either. Bring three pencils. Give them one of yours. (Rule number three pertains to batteries, and rule number four to food, but we won't get into that now.)

I left my room this morning in full compliance with rules one and two, carrying three #2 pencils and my calculator in a plastic bag. As I was leaving the dining hall, I noticed that my friend "Sasha" had forgotten to sharpen her pencils. In response, she begged for one of mine.

I was, of course, delighted to hand her one because it provided the perfect opportunity for me to lecture everyone on my Pencil Rules. "John" laughed, "Lucy" called me cute, and we all started over to take the test.

By the time we got to the test, there was a hole in the bottom of my bag and *I* now had pencil issues. It turned out OK; I got more from the proctors, but apparently the Pencil Gods don't like it when we rescue their victims.

Now, as implied in the title, here is how this test was unique for me with my challenges:

First and foremost, I really enjoyed the PSAT. I had an amazingly fun time. I love taking standardized test, and this one didn't even count for anything, since we can't qualify as National Merit Scholars until next year. so I genuinely had the most fun morning I've had in a long time.

That being said...

The major lesson I learned today was: Thou Shalt Not Standardize Test With Feet Dangling. I figured putting my feet up would be a huge inconvenience to everyone else, and I was determined to tough it out. I lasted exactly an hour from the time I sat down (about twenty minutes into the actual test) before I was in so much pain I wanted to cry. One of the proctors got me a chair to put my feet up, but by then I was in so much pain that it affected my thinking abilities on that section of the test (not unusual, by the way; until very recently most days were that bad or worse).

I finished with about three minutes to go, so I hypnotized myself to mute the pain before I went on to the next section. I've gotten proficient enough at self-hypnosis that I can relax, go down, "turn off" the pain and come back up, all in the space of about two minutes. It never helps very much, or for very long, but if I can relax enough to do it, it can make enough difference that I can focus sort of halfway off it. By the end of that section, I had to hypnotize myself again; that time, it made enough difference that I was able to finish the test without any "mind tricks". Still, lesson learned: do not try to do something I cannot normally do when it matters most. Or, more eloquently phrased: My contribution to survey results based on ethno-religious group or income level is screwed up if I test while in a lot of pain because I don't have proper accomodation.

"Would you rather..."

At some point, almost everyone asks themselves, or is asked, the following question: "What if I had (insert disability here)?" This can vary among teenagers as "Would you rather _________ or __________?"

For those of us who are already disabled in one way or another, that question becomes "Would I rather be/have (insert disability here) instead of what I'm already living with?" Over the past year, I've asked myself that question about many forms of disability; what follows are my answers.

1. Blind: No, absolutely not. Can you imagine how hard life would be without eyes, and all the beauty on which one would miss out in the world around one? No matter how bad my pain gets, I would always rather be in pain than blind. This also applies to vision impairments like color blindness.

2. Deaf: This one is a little harder to answer. One would still miss out on a lot, but in this day and age, I believe it is easier to cope with being deaf than with being blind. On most days, yes, I would rather be deaf than in pain.

3. Cancer: Yes. Absolutely. No question. It may seem weird, but I can completely honestly say, "I wish I had cancer." Everybody understands that cancer is devastating and that the patient is really sick even if you can't see anything; I don't often get that kind of empathy.

4. AIDS: No. I would not rather have AIDS. I don't like the idea that every little cold could kill me. This is inconsistent with my feelings about cancer, I know.

5. Paraplegic: Depends on the day. Today was goodish: I felt sort of halfway normal. Today I enjoyed slightly greater freedom than normal, and the thought of being paraplegic made me feel claustrophobic. However, four days or even two days ago, the answer would have been yes, I would rather be paraplegic.

6. Quadraplegic: No. I can't begin to imagine the level of pain that would make me wish for quadraplegia.

7. Amputation: For some reason, this is harder to contemplate than quardriplegia. But...nope, don't want this one either.

8. Cerebral Palsy: It would really depend on the level. I knew two little girls once with cerebral palsy; they did have an aid to help them with fine motor stuff, but otherwise functioned fairly normally. I've seen videos of severe cerebral palsy, though; on some level it's tragic. I don't even want to think about this one.

9. Mental Disability (Down's Syndrome, Mental Retardation, etc.): Yes. Yes, yes. Yes, I would rather be mentally disabled. Especially if I were born that way, if that were the only thing I had ever known, I think I could be very happy.

10. Psychiatric Illness: No. Never. Absolutely not. I'm very close to someone with bipolar disorder, and it is so scary for him. I would never want that; never. I don't want my brain to go wrong. I mean, yes, I know, it already has, but so far it's only caused physical pain.

11. Diabetes: Nope. Don't want that either. I can't imagine having to stick myself and draw my own blood so many times a day. No, thank you.

12. Hemophilia: I'm not sure, but I don't think I would want this one either. Maybe it wouldn't hurt me to move around, but I'd have to be so careful that I'd probably be even more limited than I am now.

13. The same syndrome in other areas of my body: These are the areas that I would rather have hurt, that would be easier to deal with than my feet, I think: knees, back, stomach, chest, neck. These are the areas that I feel very grateful are not hurting: hands, shoulders, head, groin. Everything else is open to question.

Hmm...that tallies to eight no's (blindness, AIDS, quadriplegia, amputation, cerebral palsy, psychiatric illness, diabetes, and hemophilia) and three yes's (deafness, cancer, and mental disability), and two that divide in half so I'm not counting them at all (paraplegia and RSD in other areas). I guess I'm fairly well off, if I can imagine eight worse scenarios.

In my Fantasy Life

What follows is a series of word-snapshots of what I imagine doing, what I would do if I were healthy...

I'm standing in the gym, shooting baskets. I'm not very good at it; for every one that goes in, there are four or five that don't. But I'm having a good time, and I take off running around the gym, dribbling the ball...

I'm at prom, in a lovely blue dress and a cute pair of heels. A tall boy is dancing me around in his arms, around and around, and I can smell his aftershave and the dancing doesn't hurt and I'm over the moon in love as I lay my head against his chest...

I'm playing a part in a musical, not a principle part because I can't sing well, but a part's a part regardless. And maybe I only have a few simple dance steps to do, but I can do them, and people clap for me, and the memory sticks in my head for weeks as a good day...

I'm rolling down the big hill opposite the geothermal energy works, rolling down and down and down, then standing up and running back up and rolling down again, over and over. And I can keep going, just rolling down the hill, for like half an hour, until I get all dizzy. And then I'm lying on my back with the breeze on my face and the clover around me; just a nice, warm, lazy day...

I'm on a walk in the woods, enjoying the beauty of nature, clambering over roots and rocks and streams. I can stay out for hours, just enjoying the world around me, listening to the songs of the birds and singing right back at them. And the song in my heart and the song on my lips melt together to become one, and my feet begin to dance to match the song...

I'm at the mall, shopping for jeans, and I can walk to store after store after store. In the big chain stores, I walk all over just for the pleasure of window shopping. And it's a nice Sunday afternoon with friends and we're just having a good time, and my homework can wait until tonight because I'll still have the energy to do it...

I'm sneaking up behind a friend I haven't seen in a while, because I want to surprise him. I tiptoe silently closer...closer...then break into a run and jump and grab him from behind. He turns around in shock, and I laugh at him, and then we stand there talking for half an hour or so...

Only in my fantasy life.

Reasons Why I Want to Cry Tonight

I know I don't usually make lists of reasons why I'm sad--in fact I find that depressing and actively try to avoid it--but I have to get it off my chest and nobody (including me) has any time to talk to friends right now because we all have so much homework, so a list it is. Wow. Run-on sentence.

OK, here we go:

1. I took an irrevocable turn for the worse on Friday, really the climax of rapidly going downhill, but I wasn't watching out for it. I now hurt more for longer after I do something I shouldn't, hurt more sooner in the mornings, can do less than I could a week ago, and just hurt more period. I just got my crutches two months ago; already I want a rollator.

2. I'm all behind on homework, because there were a few weeks when I was figuring out how to adapt to pain and forget that I was adapting so I could go on with life. Does that make sense? (It should, because I have now figured out how to do it.) Anyway, I spent yesterday catching up on Hebrew homework, working on a Bible essay, studying for a couple of quizzes, and doing miscellaneous little assignments. As a result, I bombed a Chemistry quiz today, got a zero on a homework assignment I completely forgot about, and didn't start my English essay until the last minute. My grades for this trimester are shot.

3. As we speak, random parts of me feel like they're being stabbed. Right this second, it's a random point on my lower back; as soon as one stops, another one starts.

4. I wanted to play basketball. I planned on it. I really, really did. And now I can't. Some of my dearest friends are on the basketball team, and I'm extremely happy for them...I am also extremely jealous.

This may not seem like many reasons to be upset, but each is pretty huge in and of itself.

Frightening

Life has a way of being frightening sometimes, you know? I don't know how to deal with increasing pain anymore. I'm tired of it getting worse and worse. I actually emailed my Dr. on Friday (OK, I emailed my mom, who forwarded my email to the nurse practitioner--I think--who said she would let the Dr. know) begging her to prescribe me something because I can't live like this forever. It takes a lot of pain for me to get to that point.

I'm tired of my feet burning, on and on and on. I'm tired of walking a path of endless fire. I'm tired of my hands burning if I use them too much, muscles tightening from lack of movement (not a symptom of RSD; lack of movement tends to do that to anyone), and my shoulders developing something weird from using the crutches. I'm tired of never feeling fully healthy, never not hurting, never being able to spontaneously go on a walk with friends...

And I'm scared because this keeps increasing. Not that every day is worse than the last--it's not that cut-and-dried--but average keeps getting worse. I just got my crutches in August; already, I hurt as much or more using them than I did without them before I got them. (Did that make sense? I know what I'm trying to say.) I'm considering a rollator (walker on wheels); I'm considering a wheelchair; I'm begging my Dr. for pain medication...something is very wrong here.

I want it to stop. I want it to reverse. I want to wake up and have it all have been a nightmare. I want it to go away. Where will it end??!!

(Also, I just want to thank all my wonderful friends. Thank you.)

Determination

Let it not be said that I give up easily. Let it never be said that I take the easy way out. Witness the story of me doing my laundry today:

For the past couple months, I'v ebeen asking other people to carry my laundry upstairs for me, but they're getting sick of it and I can hardly blame them. I decided that today, no matter what it took, I was going to do my laundry myself.

I left my room on crutches, with my detergent between my knees and my laundry bag in front of me, swinging from the crutches and pushing the laundry bag with my feet. I soon saw that this woul dnot work: the detergent kept slipping, laundry was spilling out of the bag, and the whole process was long and painful.

Lik eevery other human being, I only have two hands. I can't use crutches and carry my laundry, but neither was I in shape to walk unaided. Fine. I dropped to my knees, and "knee-walked" down the hall, carrying my laundry bag and detergent. I climbed the stairs on my knees, still carrying everything; started my laundry; and crawled all the way down the stairs and back down th ehall to my crutches.

Let it never be said that I give up easily.

"Living on the never never / Constant as the changing weather..."

OK, so the title is totally plagerized from a song from "Blood Brothers" (the musical, not the band) but it's totally true.

Chronic pain is just as constant as the weather, just that unpredictable. Yesterday was the worst day I have ever had, ever: for no apparent reason. It was so bad I needed a nap at lunchtime, and went to bed at 6:15 and stayed there for 15 hours. There is no real reason for this, unless it's that I wasn't as careful as I should have been...Thursday morning.

Today was good footwise, but my hands are really bothering me. I had to keep taking my ring off because it hurt my hands, and typing this is causing my left hand to tingle and burn. The latest place my pain has spread to is my shoulders and/or upper arms. Like every other potentially painful area (hands, knees, ankles) they don't hurt all the time, but today brushing my hair hurt; I had issues carrying my tallis to services; and I had to stop playing "boom-snap-clap" sooner than I'd lik ebecause my shoulders felt like they were about to fall off.

But the most important part of the title is "LIVING on the never never". Life doesn't end because of a devastating diagnosis. There is always hope, even if RSD is incurable right now; there is always light; there is always happiness if you look hard enough. I've been blessed with a heart that swells with love for all of my beautiful friendships. I am happy; I am living; I am Me. That's enough. I may be very sick, but that's enough. I love my life, and I am constantly amazed at the growth and change my soul has undergone and continues to experience.

Teenage Males and Sensitivity

I have two large, athletic male friends, whom for the purposes of this blog I name "Dave" and "John". Both are kind, caring, sensitive and committed people, who differ from each other in one regard: my pain.

"Dave" has not known me as long and didn't have a chance to get to know me before the pain climbed unimaginably. I don't show pain at all anymore until it gets to a level where I'm not sure I can survive and don't really care, but whenver I do (and we're just talking facial expression and the occasional gasp), he shoots me a look like, "get over it already". It would be so much easier if he were just a jerk and I could hate him, but he's not and I can't. My entire dorm unanimously agrees that he woul dbe a good father; he is sweet and caring and sensitive about everything but pain.

"John", on the other hand...I can't say enough about how kind and caring and loving "John" is to me. He recently injured his ankle, and it has only made him more kind and caring and loving: his "I understand" has changed to "I feel for you", meaning he now understands enough to know on an emotional level that he cannot understand. I've been flaring really badly since last night (this is the longest it's ever been this bad, or the worst it's ever been for this long), and "John" has jus tbeen amazing. I sent him an email about it last night, and withing three minutes he responded saying, "I'm so sorry you're feeling like this. I feel for you!...You're not in any way a danger to yourself right now are you??!!" (Sadly, yes, his last question was justified.) Then today I saw him at lunch, and he asked, "Why do you look in pain?"

I responded, "Because I am in pain."

"But you're always in pain."

"Because this is really horrible!" I put my face in his arm and cried a little.

He responded in a nice, kind, caring way (NOT a burdened way), "I hate when you cry."

Witness that I was trying really hard not to lean on him, and he not only allowed me to, he even encouraged it, and was unwittingly more understanding and sensitive than ever before.

Simchat Torah

OK, this Simchat Torah was just plain FUN! I have never seen ruach (spirit) like I saw it that night--I doubt even the Jewish Theological Seminary has better than that. People danced with so much joy; a couple of times, they even gave me the Torah and danced around me!

Then this morning I went over to the local Conservative synagogue, and that was nice in a different way. I got to see a synagogue Simchat Torah as it's meant to be, with children as our future and pure rejoicing in the Torah. That service did make me more sad than the one on campus, because it reminded me of my own childhood Simchat Torahs, when I could still dance; I don't have those associations with Simchat Torah the way it's done on campus. Also, people at the synagogue were extra-sugary-sweet-nice to me because I'm disabled. I hate that; I can always tell, and it irks me. At a certain point it's like, "So, I'm hurting. What else is new? Next topic!" Still, all in all I had a truly excellent holiday.

Oh, and a picture from the Sukkot Fair:

School Fair

Today we had a school fair in honor of Succot. I ate cotton candy and a sno cone, painted a gourd, dipped a candle, watched my friends play Go, and had a waterfight.

Well, sort of. I trailed behind the water-fighters carrying wet sponges...and dropped tomy knees to throw. When someone asked if I was alright, I threw a sponge at her. I begged her to waterfight with me, and she stood there shooting me for a few minutes while I threw sponges and missed. Good times.

I asked my friend later, "If I feel like I can run aroun dwaterfighting, I can't, can I? it just means I'm wishing?" She looked at me like I was crazy and said, "I wouldn't recommend it." So no real waterfight for me...still, I had a good time.

4-Fold

Most bad pain is two-fold. By that I mean I deal with it in two parts: one part pain, one part gaining back my strength. In all, this generally takes about two days.

Friday's pain was four-fold. I spent one day feeling the pain, three days sitting around before I could move normally again, one day gaining back my strength, and another day dealing with the emotions of all this...in all, one really good evening (Thursday), on which I overdid, screwed up six whole days of my life...not worth it at all.

Blargh...

I felt horrible Friday, Saturday, Sunday, and Monday. I was practically bedridden except for the FMC's (Four Mandatory Categories: Food, Hygiene, Religion, School). That, for the record, means nothing fun outside my room. At. All. No hanging out with friends. No recreatoinal walks. A girl can get claustrophobic spending four days in her room! And to top it all off, I did it alone because my friend "Margeret" was at home for the week, and my other two good friends both had sisters visiting, on the same weekend.

Yesterday was the first day I felt good enough to voluntarily leave my room, and today was the first day I felt good enough to venture beyond a picnic table situated pretty much right outside my dorm. So, of course, I had to go on a walk...stupid. Stupid. Stupid. My problem was, I had sort of "plateau'ed" and my pain was not increasing, no matter what I did...so I took too long a walk, and now my pain is climbing, and tomorrow will be even worse, and I am scared of how bad I will inevitably feel...and I am an idiot.

Raising Awareness

I have spent the entire weekend sitting on my butt in bed, bored out of my mind, frustrated because going anywhere hurt too much to be worth my while, worried about how I'll make it through school tomorrow, etc.

I don't like sitting around dwelling on negative emotions. It is inefficient. I loathe ineffieciency.

So I decided to start a campaign to raise awareness on RSD/CRPS. I created a bunch of handouts. Each one has a few handwritten lines describing RSD, and pushing for increased awareness, along with an original piece of "artwork" (quotation marks because I really can't draw). This is stapled to a sheet of "answers to the ten most commonly asked questions about RSD." OK, so I had to BS a little to come up with those, but only because I wanted that sheet to spread information. The idea is that I give the handouts to my friends, who use them as conversation starters. If someone seems particularly interested in spreading the word, that person can take the handout. When that happens, my friend will tell me, and I will give that person another one. When their friend passes on the original, my friend can get me to give him/her a new one for their friend...etc. This will hopefully create a chain around the country...who knows, maybe someday my campaign will reach the White House!

Also, please sign my petition for greater funding for RSD research.. The link is

http://www.PetitionOnline.com/a1s9d4f6/petition.html