A Normal Teenage Life, with Pain

An Experiment

2011-08-04T10:55:00.001-04:00

I originally created Carried in His Hands (my religion blog) as a way to separate my religious life and my secular life so my readers would not have to weed through one or the other to find what they wanted. At this point, however, I am so wrapped up in religion that it IS my everyday life. Therefore, I am going to try only keeping up one blog, carriedinhishands.blogspot.com , and use it for everything. Please sign up to follow me there!

"My" Little Girl

2011-08-02T17:43:00.000-04:00

(Please note that I am posting this on three of my blogs!)

A few of you may remember my commitment to be a prayer warrior for a sweet Russian girl with Down Syndrome who is living in an orphanage. The idea of the prayer warrior system is that each warrior is assigned a specific child for whom to pray every day. Due to life circumstances, I can no longer fulfill that commitment, but I am determined to find a new prayer warrior for "Erin." Just email laurie@reecesrainbow.org and ask to be "Erin's" prayer warrior.

You can see "Erin" by following this link and scrolling down:
http://reecesrainbow.org/category/waitingbycountry/russia/1region

Thank you so much!

My Silence Explained

2011-08-02T17:25:00.002-04:00

You have probably noticed that I have been fairly quiet on here recently.

That is not because I am not in pain. I am.

It is not because I am not suffering. I am.

It is not because I am not scared. I definitely am.

But for some reason, blogging about all this does not seem as if it would help. Instead, I am maintaining a religious lifestyle, blogging about it over at carriedinhishands.blogspot.com, and enjoying myself. See you over there!

What's the Point?

2011-07-28T20:44:00.002-04:00

What's the point of talking about pain? It won't make things any better. It won't make it go away.

What's the point of talking about pain? I will suffer whether or not I speak up.

What's the point of talking about pain?

People are listening. That is the point. I am not alone. That is the point.

And wow do I feel bad today. During physical therapy, I just about literally hurt everywhere. Even now, I get intermittent pains in my face radiating down my back and out into my arms. My feet are at about a steady five or six, and possibly getting worse.

And I have been on my doctor's waiting list for almost five months now.

I Feel Great!

2011-07-14T20:24:00.003-04:00

I think I may have stopped hurting for a while earlier! It's hard to tell because the hypersensitivity is always there, and there is a very subtle difference between "I feel the carpet too much"and "The carpet hurts me". Nonetheless, I really think I was not hurting! My pain never got above a five today, not even during physical therapy, not even on my walk. I even walked around in the grass, just for fun! Why? How? Because RND is just that random...but in my favor for once!

"Silence"

2011-07-12T20:18:00.002-04:00

Silence.

I am silent because I am exhausted. I have slept through the night exactly once since Thursday.

Silence.

I am silent because I am in pain. "Home base" is my feet, but my face is almost as bad. I also get random pains, of varying sensations, in many parts of my body, one at a time. They come and go at random, and quite often.

Silence.

Silence,

And a whispered,

"Oh, God."

Not Good...

2011-07-09T21:43:00.002-04:00

I HAVE NOT BEEN DOING WELL. Not. Not not not.

I hurt all night, so I'm barely sleeping. My pain has gone all the way up to an eight during physical therapy. I have random body pains as well; sometimes they stab and sometimes they burn. One today was bad enough to make me say "Ow," out loud, on a public street. It takes a lot to make me do this. As I sit typing this up, my hands are hurting. My face also hurts when I walk too much.

I am not OK.

Lots of Pain

2011-06-06T18:11:00.002-04:00

I've been in a lot of pain for the past couple days. I don't get it. I'm doing everything I can, everything I'm supposed to do except treadmilling (once my internship starts I won't have time to go to the gym), and still I hurt so much! Last night I had a dream about being in a lot of pain and screaming, and then I awakened. I have no idea whether I had actually felt that pain or not.

Urggggghhhh....

Updates

2011-05-31T17:26:00.003-04:00

Sorry so long between posts. I have been dealing with betrayal by someone I thought was a friend. I must be rather cryptic on the Internet but suffice to say it's been difficult.

Last week my senior class at school went to Virginia Beach and I had an excellent time! We went surfing, shopping, and banana boating. Pain was roaring in the background the entire time, and I did have to talk about it some. It interferes with my memories of fun, but I am trying to hold onto them nonetheless.

I really have been in horrible pain the last couple of weeks. I just need to say that and have it registered.

Most excitingly, I graduated high school yesterday! I am done with high school! Wow!

"Sometimes in my tears I drown, but I never let it get me down.."

2011-05-18T21:20:00.002-04:00

My pain is getting worse. Part of the problem is that I simply haven't been able to get into the weight room after school every day due to senior class activities. Still, I think the pain was getting worse even when I was going daily.

Function is basically unimpaired--I discovered the other day that I can, in fact, run--but, and in some ways worse, my thoughts have been invaded. I feel pain; I think pain; I am pain. This has to stop. It has to. It must.

Not OK

2011-05-11T21:45:00.000-04:00

I am not OK right now. I have been hurting a lot. I am very tired. I have been having trouble sleeping at night. I fell asleep studying this afternoon.

Life is stressful right now, wrapping up senior year. Stress feeds pain feeds stress...etc.

Not good.

Quick Update

2011-05-09T18:01:00.000-04:00

In response to a comment from Clojio:

I'm not sure if my pain is less severe or not. I don't really think it is. I am getting used to living with it though, and other interests have captured my attention. For instance, I have an internship with the local office of my congressman this summer! Sorry for the lack of posting.

Long and Painful Day

2011-04-12T21:50:00.001-04:00

Today at school we had Israeli dance lessons in place of Hebrew classes. They were fun for approximately the first half. After that...painful. Long and painful. Then I went to physical therapy...painful. Long and painful. I did feel better for a little while after that, but now I am just Exhausted and Discouraged. Two more days until Spring break.

Tentative Good News

2011-04-09T22:17:00.001-04:00

I really think physical therapy may be helping! My moments of full body pain on the treadmill have decreased: yesterday they did not happen at all and today they were shorter and less intense! I hurt less than I used to at the end of each day, and after therapy I feel GOOD for about half an hour to an hour. Small steps...but we're getting there!

Just Venting

2011-04-06T21:07:00.000-04:00

My feet have been hurting a lot today. I mean a lot. Really a lot. I have also been experiencing stabbing and/or pressing headaches in random places on my head today. Also, it is now possible for up to five body parts to hurt at once, each with a different sensation. Grrr...

Physical Therapy

2011-04-04T18:42:00.002-04:00

Today I had my first physical therapy appointment. The therapist (who had watched an instructional DVD provided by Dr. Sherry beforehand) did an excellent job abbreivating the Dr. Sherry program for an hour. It was painful, and I am still hurting, but I think (hope?) that I can feel a difference in the type of pain, and that this is the type that will improve. Does that make sense? It's really too soon to tell, I know, but still...I have hope.

Open Mic Night

2011-04-03T13:37:00.002-04:00

Last night here at school we had open mic night. People signed up (some in advance, some on the spot) to read poetry, sing, and tell stories. I laughed so hard I cried, I heard some great original works, and I even recited two poems: on eby Lord Byron ("She Walks in Beauty") and one by me ("Conveniently Forgotten," previously known as "Untitled.") Great fun!

I am hypersensitive...

2011-03-30T20:51:00.002-04:00

...physically. Not emotionally.

Today in class my teacher bounced a foam ball (FOAM! I told you I'm weird!) off the floor and it accidentallly hit my back. I yelled (some pain, mostly anger because I assumed it was deliberate) "OW! That hurt!" and the teacher thought I was overreacting. I had radiating pain up my back for two hours after that, and I'm still not sure it's back to normal.

I was NOT overreacting. I wasn't.

(And I just hit myself in the back to see if it was back to normal...yeah, and it's not.) :P

I Need Sleep

2011-03-30T11:41:00.001-04:00

I. Need. Sleep.

As in NEED. As in NOW.

I want to wake up in the morning feeling rested rather than as if I hadn't slept at all. I want to be able to better control my emotional reactions, which I can only do when I am well-rested. I want the dark circles under my eyes to disappear instead of getting darker and darker as my face gets paler. I want to feel better again.

Hey God: Decent sleep, please.

Six more days until physical therapy.

Going Downhill...

2011-03-29T20:28:00.001-04:00

I cannot honestly, 100 percent for sure say that the pain in my feet is getting worse every day, although it does seem to be. The intensity of other symptoms, however, definitely is. Symptoms I've experienced (not all in the same day) include feeling faint, sharp chest pain, random stabbing pains, random burning pains, shooting burning pains, and of course the ever-present foot pain. The overall discomfort level is increasing by the day.

Seven more days until physical therapy!

Getting Worse

2011-03-25T16:45:00.002-04:00

Just a quick note as I have to go get ready for Shabbat:

I am faithfully following my doctor's orders, but the pain is not getting better. In fact, I am pretty sure it continues to get worse. I am also losing sleep. Two days ago I was thinking, 56 kids on the waitlist...I can handle it. Now I am thinking, 56 kids...God help me.

Another Countdown...

2011-03-23T19:38:00.001-04:00

Following my Dr. Sherry appointment, I was looking for something to which to count down, because life in unpleasant circumstances is always easier when one can count the days down instead of up. So I am counting down to...

...my first physical therapy appointment! Dr. Sherry sent an instructional DVD so the therapist can learn to mimic his program. My appointment is on April 4...thirteen days!

The Hard Stretch

2011-03-22T19:25:00.002-04:00

So now this journey really could be just as long as it seems. There is no guarantee of when I can get into Dr. Sherry's rehab program. There are five spots available, the average patient requires three weeks in the program, and spots get filled just as quickly as they open. That's reality.

Yes, I can treadmill for 45 minutes a day and see a physical therapist in town here. But those are imperfect options. Obviously they will help some, but I know for a fact that Dr. Sherry's program works wonders.

So pain is once again a fixture in my life, at least for a while. Now comes the really hard part, the quest, the secret to living like this: I must find meaning. I must find happiness. I must transcend the pain.

I'm on a mission.

Saw my Doctor

2011-03-21T22:24:00.003-04:00

So I went to see my doctor today. We sat in his office and talked about my symptoms. I didn't fully realize how weird this whole thing is until he was touching my arms, legs, stomach, etc. I had told him that I was full body hypersensitive, but it took his asking, "So all this hurts?" and my answering affirmatively before I connected the dots to..."Oh sh*t."

I am on the waitlist for his rehab program (the same one in which I participated in February of 2009) but that waitlist is...wait for it...56 kids long. Yup, that's right: fifty six.

In the meantime, my doctor wants me to triple my treadmill activity to 45 minutes a day. He also sent me home with an informational packet and instructional DVD to give to a physical therapist around here to teach him/her how to mimic the hospital program.

So, that's my day in a nutshell!

Full Body

2011-03-20T15:43:00.002-04:00

No, I am not burning full body, at least not yet. But:

My hands are misbehaving inconsistently. There are times when they feel perfectly normal. There are times when touching things is unpleasant. And there are times, such as now, when they just hurt--constantly.

I itch in multiple places at once, pretty much all the time. If I scratch, it burns and blossoms into pain. If I rub hard, it feels as if I have bruised myself. If I rub lightly, the itch does not go away. It's a constant balance between itching and hurting.

Also, my whole body is hypersensitive to touch etc. The other night, "John" gave me a hug and patted me on the back, and it hurt.

As far as I'm concerned, my doctor's appointment (tomorrow!) cannot come soon enough.

Imagine...

2011-03-18T11:43:00.001-04:00

I am going to lead you, one by one, through the sensation sI am feeling. Try to walk with me and imagine, please.

1. Imagine lighting a fire in the sole of your foot.
2. Now imagine walking on it.
3. Imagine your hands randomly burning for unpredictable amounts of time.
4. Imagine shooting, stabbing, burning pains all throughout your body every time oyu exercise.
5. Imagine being hyper sensitive to touch all over your body, such that putting on your backpack strap "burns" your arm.

Just imagine. Please.

Strange Day

2011-03-17T21:21:00.003-04:00

1. Foot pain, all day, varying from "good" to "almost bad". (4-7 on a scale of 1-10, 5 being a nerve conduction study.)
2. Intermittent burning pain in my hands.
3. "Butt burn" from sitting "too long".
4. Metaphorical sheet of fire covering my back for about thirty seconds while on the treadmill.

I am worn out. I wasted half my study hall, and I don't even care. I am now going to get ready for bed. Good night.

I hope I sleep.

Making a Poem

2011-03-16T19:14:00.002-04:00

If you are reading this post, it is because I have been successful and there is a poem down below. If not, well, then you wouldn't be reading this.

Burning blood
Streaming down
Her face:

In rivers
And creeks;
The screams,
The shrieks.

Blood and bone;
No one's home.
Twisted,
Scarred,
And burnt.

Sacrificed by man
So he can live.

Advice Please

2011-03-16T11:35:00.002-04:00

I feel as though pain is taking over my life. I don't just mean the physical restrictions; I mean I can't think/talk about anything else even when I want to. My default reaction to "How was your day?" or "How's your day going?" is "Painful." Even when I would rather talk about something else, my pain becomes the topic of conversation. It also seems to be taking over my thoughts...any suggestions?

Crippling Pain

2011-03-13T18:39:00.001-04:00

Things I can no longer do due to pain:

1. Run
2. Climb up/down stairs without banister
3. Stand for more than about five minutes
4. Sleep properly at night
5. Walk at normal speed
6. Do more than fifty jumping jacks (and by now probably a lot fewer)

This is getting to be truly disabling again.

How We Know I'm Not Doing Well

2011-03-12T20:57:00.001-05:00

1. I have moved from pain I can describe in understandable terms (burning hot) into pain I can only describe using terms that make no sense (burning cold).

2. I wake up every morning feeling as tired as I did when I went to bed--or more.

Reaching Out for Human Contact

2011-03-10T21:20:00.002-05:00

I need someone to comfort me tonight. My gain in pain has finally outstripped my learning curve regarding how to deal with it--and I don't know what to do. I am devastated. I hurt so much. I actually feel disabled today because it's so hard to convince myself to get up and move. Running is impossible; we had to during physical training (like PE) today and I just couldn't. Resting on my bed did not cause the pain to even remotely go away. I didn't sleep well last night and I am just worn out. (I will soon be starting a sleep med, even though my pain specialist disapproves, because I do need to protect my mental health and prevent another bipolar episode.) I need some human contact and comfort.

Nothing to Say...

2011-03-09T21:10:00.002-05:00

...but I need to be heard so I am going to start typing, see what happens, and most likely post the results.

My pain really is getting worse by the day. I thought I was having a "good" day today...and then I started really walking somewhere for the first time since lunch...and I immediately knew it was no longer a "good" day. My courage and strength, however, are also building: however bad the pain the day before was, I wake up the next day able to tolerate slightly worse than that. As long as my strength gain keeps up with my pain gain, I'm good.

It's hard for me to deal with the fact that a boy in my class has leukemia at the same time as my being in pain. I don't really feel comfortable posting detailed feelings here (some of them could be taken the wrong way, and I don't want to risk it), but it's hard.

I was too tired to do more than an hour of reading for biology tonight...and I have mountains (almost four more chapters) of biology to read before the next test. I didn't do any homework at all during study hall yesterday because I was too upset over the boy in my class (I'll call him "Nate") and related issues, so now I'm behind.

So yeah...I'm tired, and I'm hurting, and I needed to vent. Thank you all for "listening".

Freaky

2011-03-08T21:21:00.002-05:00

Remember the boy I mentioned, the one in the ICU? He's been diagnosed with Leukemia. Prayers, prayers, please!

Griping

2011-03-07T21:05:00.003-05:00

I am really hurting a lot right now...enough to make me vocalize the pain (in private...only in private). There is a slice of my right foot that feels as if it has been cut off and is being burned. I had a day off from school today and barely did anything and I still feel like this. I am scared for tomorrow because I know it will hurt more, both because (short term) the more I do the more I hurt, and (long term) I didn't exercise enough today. On top of that, my classes have rolled over because the trimester changed, and I now have class with the one teacher I don't trust in the afternoon, when my pain is bad. Now I will have to work doubly hard to hide the pain.

Just going to say this once: OOoooowwwww...

Selfish? Needy?

2011-03-06T22:38:00.003-05:00

Being in pain quite honestly turns me into a person I don't like. Ordinarily, I give a lot to the world: planning fundraisers, advocating for causes, and nurturing friends. I flatter myself that I am patient, loving, and giving under ordinary circumstances.

Not so much when I'm in pain. Short-tempered is a mild description of me when in pain. Often times, I almost literally bite my tongue because every little thing annoys me too much for me to trust my words. I do not have the energy to run big, "save-the-world" projects when I'm in pain, and so I cannot work to save lives that literally hang in the balance. Instead of being give and take, my relationships with my friends become them giving and me take-take-taking.

Although part of me knows I can't help this and it isn't my fault, another part of me feels guilty for taking so much more than I give.

I Have Crossed the Threshold...

2011-03-06T14:00:00.002-05:00

...into overnight pain. Not bad, and I don't think I can feel it when I sleep, but definitely there. I woke up several times last night and could feel the pain (just a little) each time.

I am already hurting as badly as I do after PT, and I haven't done it yet today. I'm scared of exercising. Of course I'll do it anyway, though.

I miss "John", who's home for the weekend (we are having a long weekend in between trimesters), and "Elijah", a day student. I have a new friend, "Michael", whom I could probably email, but I don't feel as if I've known him long enough to trust him like that yet. In short, I feel alone today...and lonely.

I have, however, gotten active on the message boards of "butyoudontlooksick.com" again. It is a great comfort to be among others with chronic illnesses/conditions, even if only online.

Recognition

2011-03-05T19:21:00.002-05:00

I was walking with a friend yesterday discussing RND, and he told me it sounded worse than cancer.

Medically, I do NOT agree with that statement at all.

That being said, in one way he was right: When people have cancer, they are treated as if they are sick and everyone understands. People with RND are often forgotten, ignored, or disbelieved.

It was nice to get some recognition from my friend as I fight this daily battle.

Moving Right Along

2011-03-04T15:43:00.002-05:00

The RND is definitely starting to spread to my hands. I am hoping to stop that in its tracks with desensitization (rubbing with a towel).

Also, I will mostl likely see my doctor in Philadelphia sometime this month.

Better (?)

2011-03-03T17:17:00.002-05:00

Today was a better day painwise, but I don't trust it. It was just too random, and it wasn't good enough to signify the end of anything. My feet were still in a lot of pain; the shooting pains I have been experiencing (mostly while exercising) the last few days were still there; and I think this *might* (emphasis on might) be spreading to my hands again. As planned, I will contact my doctor on Friday.

Just a quick update.

Prayers Please

2011-03-02T22:11:00.001-05:00

There is a boy in my class at school who is in the ICU,very sick...prayers please.

Really Starting to Bug Me

2011-03-01T19:59:00.001-05:00

This whole RND thing is really starting to bug me. I've been hurting easily all day and the pain burned like fire for a portion of it. I instinctively move gingerly, I lie on my bed more than I should, and it still hurts. I treadmill more than I want to, and it still hurts. When I wasn't resting, it kept getting worse; I started resting and it continues to get worse. To quote something I saw somewhere (it might have been a t-shirt): "Pain when I walk, and pain when I don't; pain when I stop, and pain when I won't." Pain, pain, pain. URRRGGH.

Worth Reposting...

2011-03-01T17:06:00.001-05:00

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

Just to remind everyone of the type of pain I feel when it gets bad enough. I did treadmill today but by the time I got off I had shooting pains throughout my body...like sparklers.

Alone and in Pain

2011-02-28T18:10:00.001-05:00

I really, really hate this time of day. It's the time of day after I push through as much pain as possible in an attempt to complete my physical therapy exercises. It's the time of day after I allow myself to collapse on my bed and rest. This is the time of day when I must get up and function again, and it is very hard, for though the pain has faded the memory thereof has not, and I still feel--traumatized is the wrong word--exhausted. I feel exhausted.

And I'm all alone in my room.

Rumors

2011-02-27T20:47:00.003-05:00

So I have been made aware of the fact that rumor on campus has it that I am making up my pain.

I'm not surprised. The same rumors went around last time. I can even understand why this is happening. RND is sufficiently unusual that most people have not heard of it; it is sufficiently weird that it's hard to believe. On top of all that, it's very scary.

You see, if people admit this is real, they must also admit that it could happen to them as randomly as it happened to me. If they admit that, they realize how vulnerable they really are. If this is fake, however, than they are safe: it cannot happen to them.

Everyone prefers to feel safe. Unfortunately, that does not seem to be an option for my life.

Restarting, Unfortunately

2011-02-27T18:03:00.001-05:00

A week and a half or so ago, I dropped a ball on my foot and the RND got really bad again. Although I am fighting hard (treadmill, PT, etc.) the pain is getting worse almost by the day. My friends are sick of hearing about it and while I cannot say that I blame them, I do need an outlet to gripe about pain. This blog will be my outlet again and hopefully prevent the RND from taking over my mental/emotional life. So, faithful readers, welcome back!

Back from Philly: The End of this Blog

2009-03-01T21:18:00.005-05:00

And so, my friends, the saga of my RND has come to a close. I am well on the road to complete recovery. I hurt less at the end of a day than I did before I left, and every day I can tolerate more and more activity before I wind up in significant pain. Over the next few weeks to months, my pain will continue to decrease and eventually disappear completely.

Before I go, I want to thank all my therapists at CHOP, especially specific people. These pictures are not censored, and real names are used, for two reasons. First of all, I was required to ask permission before taking these shots, so I have the people's consent to distribute them. Secondly, I may never see these people again, and I miss them!

First is Tia (far left), the amazing pool therapist. She is SO MUCH FUN!!! She called me "munchkin" and "vertically impaired".

Christy was one of the way cool Occupational Therapists. I ended up having "contests" with inanimate obejcts (in a nutshell, keeping score of how many times they interfered with my life vs. how often I managed to save myself) and she would join in on occasion. Christy was the one who tried, very hard, to teach me to jumprope. She is under the impresison that it is possible to teach me coordination. I give her an A++ for effort!

Next is Deb, the amazing nurse practitioner. She was one of two people who asked about my pain level every day (necessary documentation). I called her Raven because she reminded me of one, and she liked it when I patted her head. (She was Tiny!)

This is Kira...Oh. My. God. I. LOVE. HER. There are just not enough words in the English language to sufficiently praise Kira. She is sweet and caring and young and enthusiastic and passionate and interesting and interested and WONDERFUL...just a person-shaped package of Wonderful. Kira was the one who didn't understand how serious I was when I said I was going to throw up all over the floor...but once I did, she supervised the cleanup and let me go wash up in the bathroom. Then she set me back to exercising, but once I told her I hadn't eaten breakfast (too nauseaus), she took me upstairs to grab dry cereal and ginger ale, and sat with me while I ate it to make sure I was OK. Kira usually called me "Goofball", with the occasional "Lovebug" thrown in for good measure. Kira...if you're reading this...I LOVE YOU sooooo MUCH!

Last but most certainly never least: The amazing, the incredible, (the cute, because I know he owuld want me to add that in here), the one and only...Dr. David Sherry. This is a man who has found his calling and is using it to work miracles. There are not enough of those people in this world. He also really, really cares about his patients as individuals: at least 80 percent of the time I spent with him while has making rounds (when he could have just finished the doctor part and left to go do something professional) was spent discussing Judaism, cracking jokes, and trying to outsmart each other with grammar and history. He made me dance with him every day and told me stories from his childhood. He taught me what a synecdoche is, and then I discovered the correct spelling. Oh, and by the way, his beard is naturally striped. Way cool.

Miscellaneous Pictures:

So now what? I have a follow-up appointment with Dr. Sherry in April, and another sometime in the summer. I may blog about both of those here. In the meantime, follow me over to my new blog: mushroomchickens.blogspot.com See you there!

New Project

2009-02-25T22:17:00.002-05:00

I have decided to "put my money where my mouth is" and actively start supporting help for issues about which I care. I will pick one charity and work towards helping it--donating where I can, telling others about the issue and charity, posting about it here, etc.--for the duration of the year. If it goes well, I will pick a new one. I know I will not make a huge diffrence, but as Mother Theresa once said, "We can do no great things, only small things with great love." I support too many issues to pick a specific charity, so I will post information about, and links to, several here. Please comment and le tme know which one to pick for my project this year! I really, really want thi sto be the result of a majority vote: reflecting not just my passions, but the passions of my readers as well.

International Justice (www.ijm.org) is actively working to end the modern slave trade in all its forms. Once victims are successfully brough tto freedom, IJ works to see that they get the legal compensation to which they are entitled, as well as the means to start over again, support themselves, and live successful lives.

Equality for Adopted Children (www.equalityforadoptedchildren.org) is working to secure equal rights for children adopted by, and those born to, US citizens. Did oyu know that a child born outside the US cannot run for president? That an HIV+ child adopted by US citizens must have a special waiver to enter the country (which often adds extra weeks or months to the adoption process), while an HIV+ child born to US citizens residing outside the country does not? These are just a few of the laws EACH is working to change.

The National Marrow Donor Program (www.marrow.org) matches blood and bone marrow donors from their database to patients with life-threatening illnesses who must receive a transplant and/or transfusion in order to live. Donations fund transplant costs and research.

Heifer International (www.heifer.org) donates farm animals to needy families world-wide. These animals produce milk, eggs, wool, etc. for the family to use and/or sell, allowing them to become self-sufficient and even send their children to school! You choose the animal; Heifer chooses the country. (The cheapest is a flock of chicks, ducks, or geese for twenty dollars; most expensive is a heifer for five hundred dollars; you can also donate large things such as livestock development for ten thousand dollars, or invest in chares thereof.)

PLease take the time to comment and tell me which charity to fight for this year!

Watch the Video...Please...

2009-02-25T20:54:00.000-05:00

http://buildingtheblocks.blogspot.com/2008/05/143000000.html

THIS is why I am passionate about adoption: international, domestic; infants, older children; healthy children, special needs: this video is why. I know there is major corruption in the adoption industry. I know international adoption in particular is often a last resort for starving mothers, and if we adopt a child with out giving back to their country to whatever capacity we are able, then on some level that child is not really ours, for we are then stealing someone else's child. I know adoptees sometimes feel out of place, adoptions are sometimes disrupted, and even in the families where adoptions are successful it takes work to build and maintain relationships. I know.

But seriously??? 143000000 orphans in the world today?

A Story of Triumph

2009-02-24T22:40:00.002-05:00

Through my time at this program, I have realized that I have probably had mild RND--undaignosed, of course--for at least the last ten years. The last physical activity that I can remember not hurting is learning to skip in kindergarten. I am having to consciously reteach myself how to walk--pick up the heel, then the toe; heel, toe; heel, toe--because I have not walked "like a human" as my doctor puts it in so long.

And yet I am conquering. I really am. I've been here just over a week, and already I've undone two or three years of pain etc. My doctor has already asked me how I feel about going home sometime next week. (For the record, I told him I would be extremely nervous if he discharged me this Friday, but by next Friday I woul dprobably feel like this was redundant.) I am stronger, more fit, and more energetic than I have ever been--ever, in my life. I have these amazing ab muscles.

I do still hurt after activity, but it's less pain, lasting for less time, after more activity. I am fully functional: running, jumping, dancing with my doctor (his idea, not mine). I am unstoppable. Watch me go.

"Veni, Vidi, Vici."

HAPPY...just happy.

2009-02-19T20:04:00.001-05:00

I really am just so happy here, and proud of myself. I got the exercise I couldn't do yesterday on my first try today, and I only had to repeat the ones I had trouble with today four times each! I better be able to get sports credit for this; I am working out 38 hours a week (seven hours weekdays, hour and a half per day weekends).

I have more energy than I have ever had before, possibly at any time in my life. Forget functioning at 100% of my healthy energy (I hadn't had more than 50%, even on a good day, in months); I am functioning at 100% plus, 100% of someone ELSE (more energetic)'s energy. On seven hours of sleep a night, I feel more rested than I did as a kid on ten hours of sleep...and on ten hours I could be unstoppable.

Tonight I had to go all the way up to the eighth floor, in the main building, to do my laundry. (WHY are there no laundry facilities anywhere near my room?) I ran up three of the five flights of the stairs, and ran down all five. Anytime there's one flight of stairs, I make myself run it for extra PT.

I did power minutes today: one minute each of mountain climbers (stand on hands and toes, one foot forward, one foot back, and keep switching), jump-taps (one foot up on a ledge, one foot down on the floor, keep switching), jump-twists (jumping, feet going one direction hands going the other, then switch), up and down off the floor (down on one knee, then the other; up on one foot, then the other; no hands), and jumping jacks, without rest breaks in between. These were the LAST FIVE MINUTES of physical therapy, after I'd already had Yoga, OT, free period, PT, lunch, music therapy, and more PT. And I still did it.

I am stronger, more energetic, and more flexible. I am learning balance, coordination, and perseverance. Watch me go...I shall be unstoppable.

Perhaps I could conquer the world.

Proud of Myself

2009-02-19T12:01:00.003-05:00

I am really proud of myself today! I beat the PT exercise I couldn't get yesterday on my first try! It was a toss-up between trying that one, or the one I almost couldn't get, first; I knew I would have to keep repeating whichever one I did second. I was right; I've now repeated the one that took me eleven tries yesterday three times. There's also another one I can't seem to get today; I've tried that one three times as well.

On the OT exercises, I beat all my times on the first try! I beat my time on the hardest lower-body exercise by 14.2 seconds!

I am hurting more today than I've been in awhile, but the nurse pracitioner says that's a good sign, that it means my nerves are reconnecting properly. In all patients, pain eventually stabilizes or begins to decrease while they're here; most still have pain when they leave but are fully functional. As long as they keep up with their home exercise programs, 92 percent of patients' pain disappears completely and they are still pain free five years later. I have a fairly mild case compared to other kids here; I think my chances are good!

No matter how tired I am, I always make myself run up and down the stairs. I figure it's that much extra PT, so I should get well that much more quickly.

Day 2

2009-02-17T20:56:00.002-05:00

I got up this morning at 6:30 (same time I get up for school, actually) after getting almost no sleep because my roommate's parents kept the TV on all night. (How much TV can a person watch? I am totally mystified.) I spent about an hour and a half this morning getting dressed, davening shacharit, and eating breakfast. Promptly at 8:00, the OT came to get me for pool therapy.

Pool therapy was lots of fun, and I got to meet the other kids in the program. There are two girls, ages sixteen and eleven, and two boys. I could tell everybody was hurting, but we didn't talk about it: the rule here is, "We don't talk about pain." And guess what? We were still joking and laughing and smiling like anything. There was one game we played where we had to hit a ball to each other while keeping it out of the water. That was where we laughed and teased each other (in a nice way) the most. And guess what else? I even jumped to hit the ball once or twice.

After pool therapy I had an hour of PT. I am sore all over from yesterday, most noticeably in my abs and quads, but I am now making sure to stretch after each PT session, and it seems to help. They are harder on me today than they were yesterday, the PT told me, "You are not allowed to collapse--EVER." So I said OK. And I stopped collapsing. There was one moment when I was screaming and crying, and the PT just stood there telling me, "You are never allowed to collapse; keep your form; I can't have you crying in the hallways." So I stopped collapsing, kept my form, and finished the exercise. And then I stopped crying.

I did collapse again at the end of the day...they made me retry the exercise...five times. Then they gave up on me for today and told me I was done. Tomorrow I have a doublr block (two straight hours) of PT in the morning, which will be awful while it lasts but then I'm done with that for the day. And I get music therapy tomorrow!

I am very proud of two things today:

1. We (all the others in the program and I) were all in the pool together this morning, and we were running back and forth. I picke dout the fastest runner and decided I was going to catch up with her. I didn't quite manage it--I was about two feet away when the therapist stopped us--but come to find out, this girl has been here for almost a month, is aboutto go home, and was an athlete (playing through her pain) to begin with. And I almost caught up to her.

2. I spent twenty minutes on the elliptical today: walking backward with the resistance at 3, and forward with the resistance at 7; changing every minute. After ten minutes, I got bored, calculated my average number of strides per minute, and decided to beat it. To be sure it was accurate, I met it on a backwards minute, then set out to beat it on a backwards minute: and I did. And then, in the last minute, I beat that average walking forwards with the much higher resistance.

I feel great: I take walks in the evenings just because I want to, and I am walking better than I have since August. On five hours of sleep last night, I have about 10% more energy than I've had on "good" days for about six months.

God works miracles.

Grueling

2009-02-16T15:04:00.003-05:00

Grueling day of physical therapy. Fell ten times. Cried twice, not counting the time I completely lost it. Lost it (major sobbing, yelling at everybody) once. I am now going to take a shower and have a nap.

UPDATE: After a shower and half an hour lying down, I feel much better. I have my energy back, and I am not hurting. Read that again: After doing more active stuff than I usually manage in three days, and only an hour or two of rest, I am NOT HURTING. Looking forward to good results from this program after all.

UPDATE: I feel so proud of myself for today, and energized! If God wants to test me, He is going to have to make it a lot harder than this.

Reminder and Funny

2009-02-12T20:59:00.005-05:00

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

If you haven't already, please sign my petition. I know I have RND; although RSD is the condition for which this petition requests research they are basically the same syndrome. Certainly the pain itself is described as being the same. Every pain patient deserves a cure!

Also, funny moment from English class today:
I fell asleep in class today while were reading Hamlet. Near the end of class, I woke up because everyone was laughing at something funny "Elaine" had said. What follows is a transcript, to the best of my memory, of my conversation with the teacher:

Me: "What's so funny?"
Teacher: "It can't be repeated."
Me: "Oh...how long did I sleep for?"
Teacher: "Not that long; I think only about ten to fifteen minutes."
Me: "Sorry."
Teacher: "well, you only missed one cue."
Me: "Oh...who read it for me?"
Teacher: "You did; we woke you up and you read it and went back to sleep."

I fully believe him. At first I thought I had no memory of the incident (I would still have believed him); now I think I might remember it, ut not being awake enough to register that I had been asleep or was going back to sleep. Yup...I've got mad skills...I've even taken notes (that actually made enough sense that I knew what I meant and could correct them once I'd woken up!) in my sleep.

Blog Post Number 100

2009-02-11T15:37:00.003-05:00

So this is it...my 100th blog post...achieved in just under 6 months of blogging. To commemorate the occasion in a somewhat-traditional blogger fashion, I will list 100 facts about myself. I will try to make them interesting/little known, but really, those who read my blog will probably know most of these already. Because I'm somewhat obssessive-compulsive, I will list my facts in categories, with as many facts as I can think of under each heading.

Clothing
1. I go through favorite-color phases, when most of the clothes I buy are a certain color. I have many purple clothing items from last year, and many brown clothing items from this year.
2. Unfortunately, my pink phase came when I didn't really need anything, so I only have one pink shirt.
3. I love to wear T-shirts that say things. My favorite of the ones I own says "I live in my own little world, but it's OK--they know me here."
4. The best T-shirt I ever read about came from Japan (I think) and said "Save the apartheid boycott of the lesbian nazi lettuce-growers for Jesus of the nuclear whale." It sold out in one day.
5. For my fourteenth birthday, I received an absolutely gorgeous pair of bright red clogs with flowers painted on. I only got to wear them that one winter because I was hurting too much by the next. I can't wait to wear them again!
6. I find the percentage of Ugg-wearers to non-Ugg-wearers slightly unnerving.
7. I do NOT understand dresses that itch in awkward places. What is the point?? How can people stand to wear them??
8. Speaking of clothing-induced discomfort: I have a much better fashion sense than I display in the clothes I actually wear. This is because tight shirts/dresses bother my stomach, tight waistbands bother my waist, and cute shoes just aren't worth it.
9. Any coat I own must have pockets, and I prefer my pants to have them too.
10. My pockets are good for my cellphone, short notes, a good luck something-or-other, or a tissue.

Food
11. My absolute favorite foods are grape leaves and dates. If indigestion and good nutrition were not issues, I think I could live off those foods.
12. I don't like to eat baby carrots without ranch dressing to dip them in.
13. Although I like most sandwiches I've tried, I cannot stand peanut butter, mayonnaise, or tuna salad.
14. Bananas are my favorite "eat on the go" food.
15. My record number of bananas eaten in one day is seven.
16. My record number of cookies eaten in one day is 16.
17. As best as I can recall, my record number of dates eaten in one day is also 16.
18. I can eat seven grape leaves (the size/filling you usually buy in supermarkets) without getting indigested.
19. The best food treat I can ask for is being turned loose in a grocery store with an olive bar, with permission to fill the largest size container.
20. I do not like wine or champagne, and I've never tried stronger alcohol.

Housing/Living Arrangements
21. When I was born, my family lived in a townhouse in Houston, Texas, which had gray carpeting.
22. My family moved to Youngstown, Ohio when I was seventeen months old.
23. Our house there was one floor, with wall-to-wall carpeting in a different color in every room.
24. My carpet was pink.
25. When I was almost five, we moved to a townhouse in the same time. This time the carpeting was beige.
26. While we were in that house, I wrote my name in red marker on the carpet in my room. This incident stands out both as the first time I remember writing and the first time my mother yelled at me.
27. A month or so after I turned five, we moved to Vestal, New York. I got the largest bedroom in the house. :)
28. Our house there has a huge forsythia bush (or perhaps several bushes growing close together) in the back yard: big enough to grow different rooms. That bush was my playhouse growing up, and I couldn't have asked for a better one.
29. I now attend a boarding school in Greensboro, North Carolina; I have my own room here, too.
30. I am not allowed to go into the boys' rooms. I am not allowed to go into the boys' rooms. I am not allowed to go into the boys' rooms. I am not allowed...

Childhood
31. I was born at 12:09 pm on February 8, 1993.
32. I was 18 and 3/4 inches and weighed either 6.5 pounds, or 6 pounds 5 ounces.
33. One of my earliest memory is being at daycare for one day while my parents had to work and we couldn't get a babysitter, and sitting on the ground beside a green metal playground, feeling lost and abandoned while children played all around me.
34. I wore a pink velour jumper to my first day of kindergarten and felt very mature and fancy.
35. I distinctly remember being six years old and completing my first addition problem with a three-digit sum. The sum was 130-something, and I remember being very proud of myself while wondering when I was ever going to need this.
36. The first book I read to a teacher (while working on reading skills) was Anne of Green Gables, unabridged.
37. My best friend and I started a "sister-friendship" club in first grade that lasted unofficially until we "broke up" in eighth grade and with which we were actually involved through third or fourth grade. We used to make my mom lock us in the basement so my brother couldn't bother us.
38. The first picture book I actually tried to read and understand in Hebrew was אגוז של זהב, (The Golden Walnut), which my dad brough thome for my older brother when I was about four. I couldn't actually understand any of it until seventh grade, and couldn't read it easily enough to make it worth my while until last year.
39. As a child, I took three eight-week impov. acting classes (we came up with a basic plot based aorund the characters we wanted to be ahead of time, but the dialogue was improvised on the spot and new for each performance) at my local JCC. I also sang in the chorus as part of my summer camp's production of Annie.
40. Some of my happiest childhood memories come from playing in the creek near my home.

Family
41. My mother is a psychiatrist. I grew up with words like depression, bipolar disorder, mania, id, ego, superego, and Freud as part of my regular vocabulary.
42. My father is a rabbi. He and I studied mishna and gemara together for most of my later childhood, and he was my Bat Mitzvah tutor.
43. My older brother is a music major at Indiana University' conservatory (James School of Music? Maybe?). He is hoping to be a professional recorder player.
44. My younger brother is hoping to grow up to program robots and computers for the military.
45. I am three years, three months, and nine days younger than my older brother. I am three years, five months, and 27 days older than my younger brother.
46. I have two cousins, both my mother's sister's children.
47. My father's brother was married for two and a half years; then his wife left him.
48. My uncle now owns a car service.
49. 130 (fmaily estimate) of my relatives were murdered by the Nazis.
50. I have relatives with bipolar disorder and CRPS ("cousin" to RND). Both have been major inspirations to me in my fight to live a full, productive, "normal" life.

Friends
51. My best, closest, most trustworthy friend is male. And no, we are not dating.
52. The aforementioned friend saved my life last year.
53. I am also friends with his sister and one of their childhood friends. Both are great people and I am honored to be part of their lives.
54. Some of my best childhood memories were made with my "sister-friend" between the ages of five and nine. We used to sit across from each other at the top of the jungle gym and talk about living near each other as adults and our children growing up together, though I think that was when we were a little older.
55. My eighth grade basketball coach, the only person who ever managed to teach me to even semi-routinely shoot a basket while standing still, became one of my closest friends. We still talk regularly.
56. I still remember my best friend from preschool. We left Ohio when I was five; sometimes I like to stop and remember and wonder how my life would be different had we stayed.
57. I have mentioned, I think, ten friends and my mom on this blog in the past.
58. Fourth grade was my best school year before high school because I had two friends and the other kids mostly left me alone. Sixth grade, the year I had three friends, runs a close second.
59. One of my friends is short and redheaded; two are tall and blonde; two are medium height, with dark hair. I am short with dark hair.
60. I consider my younger brother to be a close-ish friend of mine.

School
61. For years, my favorite class was English. Now I'm not so sure, but I think my favorite might be chemistry.
62. Hebrew is one of my least favorite classes, which is odd, because I usually enjoy learning languages.
63. I am in a senior English class as a sophomore. Next year, I will take AP English 11; the year after, AP English 12. My school is weird.
64. Teachers here wind up as so much more than teachers: they become our mentors, third parents, and friends.
65. I am taking Arabic and Literary Magazine as my lunch electives this year. Both are year long courses.
66. Over the course of most school days, I spend time honing skills in at least two languages.
67. By the end of this year, I will ave taken eleven years of Hebrew; three years of Spanish; one year of Latin; and one year of Arabic.
68. I read Shakespeare for fun sometimes.
69. I find school interesting and exciting.
70. A lot of the time, given the choice to work alone or with a partner, I would rather work alone. I am learning to work better in groups.

Hobbies
71. I love to sew, and I am getting rather good at it. It is very difficult to tell the difference between a seam I sewed by hand and one I sewed on a machine.
72. I have never in my life touched a sewing pattern.
73. I also like to knit, but I only know how to make scarves and other flat things. I could probably benefit from some knitting patterns.
74. I like to read just about anything I can get my hands on.
75. I enjoy researching international and domestic adoption, the modern slave trade, and weird genetic disorders.
76. I absolutely live for the theater. Since coming to AHA, I have played Kate in "Watermelon Boats" and Stephanie in "Pizza with Shrimp on Top"; for the last few weeks, I have been stage managing for our musical, "Showtune", which will open (OK, OK, and close too) on Parents' Weekend.
77. I used to enjoy taking long (hour or two on average) hikes in the woods. It's something I'm looking forward to being able to do again.
78. I love to sing, but I only have a slightly-better-than-average voice: not good enough for the world of musical theater.
79. I enjoy writing poetry, plays, short fiction, essays, and blog entries. I have tried several times to write a novel.
80. I am obssessed with Facebook.

My Future
81. One day I hope to adopt an older girl domestically and a younger girl internationally.
82. If living in an area where adequate housing is affordable, I would also like two biological daughters.
83. My future career will definitely involve acting. I'm shooting for Broadway because aiming for anything less is setting myself up for nothing, but it's not a tragedy if I don't make it. I could be perfectly content working at a high school and performing at local community theater shows, and that would give me time and energy to spare for other dreams.
84. One day I want to travel to Israel and pray at the Western wall.
85. I hope to see an absolute abolition of slavery in my lifetime. I know, I know...dream on. Still, as soon as I have a career and my own money, I plan to donate regularly to abolitionist organizations.
86. I will always be an observant Jew, except when it conflicts with theater. Then I will make concessions in order to follow my heart. I am comfortable with this decision.
87. I don't know if I'll end up married or not. I think I want to, but I'm not sure.
88. I am currently planning on getting my college education at NYU Tische School of Acting.
89. I have friends at school with whom I'd be honored to keep in touch for the rest of my life.
90. My children will always know they can be anything they want and that they should stay true to themselves. I will make sure they are safe and in schools where they are happy.

Identity
91. I consider myself an American Jew: Jewish first, American second.
92. I consider my ancestors to be Jewish from _________ (Russia, Poland, etc.) They were not citizens, had no rights, and were most likely persecuted by the local population.
93. When I came to AHA, I changed the pronunciation of my first name from Sarah (SAY-rah) to Sarah (SAH-rah).
94. My last name is still pronounce BAron (BA-ron) like the lord, NOT Baron (BAH-ron) or BAron (Bah-RONE).
95. I do not like telling people my middle name, but I might tell you if you give me chocolate.
96. I believe names are an integral part of our identities, as evidenced by the fac tthat facts 93-96 are about names.
97. I am named after my two great grandmothers: Soroh (translated into Hebrew as Sarah), and Gittle (GIT-tl) (translated into Hebrew as my middle name I don't like sharing).
98. Both of their names were originally Yiddish.
99. I am, in this order: Human, female, Jewish, American, a friend, an actor, and a writer.
100. I am committed to living my life as the best person I can be.

I can't believe you actually read this far! Wow! I hope it wasn't too boring.

So Happy

2009-02-11T15:31:00.002-05:00

It is so nice to be feeling good enough to:

1. Shower standing up.
2. Brush my teeth standing up.
3. Get dressed standing up.
4. Get all my homework done, to a standard I find satisfactory if I have time at all.
5. Pay attention in class.
6. Smile, laugh, and realize how lucky I am.

I never realized how many daily tasks I had mechanized down to military-type, choreographed routines in order to save myself as much pain as possible. And this is just in a naturally good phase (though I'm still often in more pain than most people have ever had to deal with for any length of time); imagine how much my life will expand when I'm well again!

I woke up this morning at 4:31, quivering all over with excitement. I didn't understand why; nothing particularly interesting has been planned for today. As I lay in the darkness, I realized, "Oh, yeah...I used to get excited like this, just at the thought of greeting the day."

So nice to be feeling better!

An Excellent Birthday

2009-02-09T10:51:00.002-05:00

All in all, I had a truly excellent sixteenth birthday. Yes, all my relatives forgot; and yes, I cried for a while; and yes, I felt my last hope for my relatives to magically become decent people, die. But the good outweighs the bad.

I woke up in the morning to find a Happy Birthday banner across the top of my door, as our dorm does for every girl in the house. In between homework assignments, I made a birthday card for a housemate with the same birthday, and opened my card and my gifts. The card benefitted Unicef, whom I hate at the moment (They stopped adoption from Guatemala without having a backup system in place, and now there are a bunch of stranded children, including those in the middle of being adopted.), but the gift was lovely. I had asked my mother for fabric, yarn, and sewing supplies; given her a few color guidelines; and asked her to surprise me. I wound up with light turquoise fabric with brownish-red dots; light green fabric with small white dots; tie-dye orange and blue fabric; pink flowered fabric; blue paisley flowered fabric; orange, blue, turquoise, white, and pink thread; two packs of buttons in different color schemes; self-patterning yarn varying from green through blue to purple; self-patterning yarn varying from yellow through green to blue; red yarn; green yarn; and a large pack of polyfill (stuffing). Too cool!!!

I spent the rest of the day sewing in between more homework. Many, many people wished me happy birthday in person, or wrote on my facebook wall, or emailed me, or called me. Too many to count! I am in awe at the number of lives I have touched and who have touched mine.

My housemother gave me a card and a giftcard to starbucks. My affiliate housemother gave me a card and a really great keychain. "Jan" gave me a random singing Shrek doll, and "Leeann" gave me a tiny little stuffed dog in a purse. At our dorm's nightly meeting in the evening, I got a cake and a group card. My day ended with the loveliest email ever from "John", sent to me at 10:41 pm.

I am blessed with friends who have become my family. I am blessed!!!

Happy Birthday to Me, and Other Random Ramblings

2009-02-07T22:31:00.002-05:00

Tomorrow is my sixteenth birthday, my "sweet sixteen", if you will. Fifteen was a very hard year, in more ways than one, but also a year full of growth, progress, and triumph against all odds. I have worked hard this year to be joyful through pain, to overcome my past and scukpt myself into the person I wish to be, and to control the scope of my public emotional reactions--and I have made tremendoues progress in all of the above. I have deepened my spiritual connections, increased the use of my empathy, and learned to let go of mistakes. I am proud of who I am in relation to where I have been.

Sixteen will be another year of challenges to face and obstacles to overcome. I can do it. I've done so much already.

Earlier tonight I was at a Bat Mitzvah party for one of the girls in my dorm, and I was the happiest person on Earth at that moment. I stood in the middle of that party realizing that, for the first time, I had been to the Bat Mitzvah ceremony of someone whose Bat Mitzvah I wanted to attend, someone who cared about me and wanted me there. At the party, I danced with many people, but I most enjoyed dancing with "John"; he even spun me around (slowly, very slowly), and he thanke dme at the end of our dance! (I really have been feeling much, much better recently.) At one point, I left the room and found a quiet place to be alone and cry for joy. It was a beautiful evening.

I do think "John", and perhaps others, has gotten the worng impression of me recently. Due to usually horrible pain, as well as other issues that occasionally overwhelm me, he thinks of me as a normally sad, withdrawn person who needs lots of encouragement to socialize and have fun. Which I am, when hurting a lot...which I was, for the past three months...so perhaps he can be forgiven. Still, that is absolutely not me in a natural state. I am naturally joyous, free, social, and "hyper"...I just haven't had that kind of energy in awhile, so that person has been locked up inside.

I just recently realized that neither "John" nor any of my current school friends have ever known me as a totally healthy human being. I can't wait until I come back from the hospital, (God willing) with the energy to be the real me.

But now I'm tired, so now I'm off to bed. Good night, blog world!

Favorite Foto Friday!

2009-02-06T12:22:00.003-05:00

Shout-out to my FRIENDS, "Margaret" and "Jan"!

Someone Up There Has a Cruel Sense of Humor

2009-02-05T14:24:00.002-05:00

I have been feeling really good since Friday night--roughly six days. It has been so...precious for me to be able to engage in basic self-care tasks like a daily shower (today I even showered standing up!), doing my laundry (there was a really rough weke when I couldn't do my laundry and just rewore dirty clothes), and taking four extra steps to hang my coat up.

I didn't want to be happy about it, or evne notice it, because I was afraid it would go away again. Today at lunch I finally relaxed, decided this might last for a while, and told "John" how good I was feeling etc. (Telling someone how I'm feeling is to me a major validation of my situation.) "John" told me he wanted to read about it here; I said I would write about it, and we went our separate ways.

Half an hour later--wham. So much for feeling good.

Irony, anybody?

P.S. I have an intake date for the program at Children's Hospital of Philadelphia. I will be entering the program on February 16 or 17. I will be there for anywhere from one to eight weeks; the average patient staying for three weeks. I will maintain this blog throughout my treatment; once cured (God willing!) I will begin a new blog. Suggestions for titles are much more than welcome, since "Life After Pain" sounds too much like focusing on negativity, "A Normal Teenage Life" will always be misleading for me and for pretty much anyone else, and "Excelsior" doesn't sound so good, either.

Child Slaves (Restaveks) in Haiti

2009-02-03T20:59:00.002-05:00

Purely heartbreaking...why, God??? Why?

http://www.youtube.com/watch?v=oKO_AimlpIA&eurl=http://esperanzadelalma.blogspot.com/2007/04/child-slaves-in-haiti.html

Please comment...I'd love to hear your thoughts.

Serious.Life Magazine

2009-02-02T07:12:00.001-05:00

This is copied from their website:

"I wanted you to know about this publication I’m a part of called Serious.Life Magazine. They just published the February issue today, and I am in their Featured Blog Directory. It’s a very high quality magazine… you’ll really like it.

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Favorite Foto Friday

2009-01-29T23:19:00.004-05:00

OK, it's early, but I don't know if I'll have time later.

My theme for this week is boy friends. I do not at the moment have a boyfriend, but my best friend outside the family and my younger brother (who really is like another best friend) are both boys. I couldn't decide which one's picture to post, so I will post both.

First is a picture of "John" from our class trip to Charleston, SC last year. I took any number of pictures of him when he didn't know it, and when I asked him to turn around for a picture, this is what I got. I truly believe God is at work when we're together and he's looking out for me.

Second (only on this post, never in my heart) is my brother, "Leo". I remember holding him in my lap at the hospital on August 4, 1996...loving him as a baby...hating him as a toddler...fighting like cats and dogs because we were so angry at life and then turning around and comforting each other...laughing and playing and swimming together...this amazingly exuberant, cheerful person challenges me to reach new heights..."Leo", here's to you!

I looked, I did, but I couldn't find a picture of my older brother. "Isaac", I love you too!

Important Videos

2009-01-26T21:51:00.002-05:00

I know I've posted this one before, bu tthis is what my life is like on aday like today. (Yes, I do know I have RND, not RSD. The only--repeat ONLY--difference is appearance of the skin: RSD patients experience dramatic color/temperature changes and/or swelling in the affected area, while RND patients do not. The type and intensity of pain are exactly the same.

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

Also, the video that gets me through the tough times:

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

Scary Place

2009-01-26T19:41:00.003-05:00

I was hurting so, so much earlier today...there are no words in the English language for that kind of pain, except maybe (maybe) "F*ck dammit bloody f*ckin hell", which still only expresses roughly half of it. I hurt more than I ever had before by lunchtime...and for the rest of the afternoon, every time I thought it couldn't possibly get worse, it did...and all I could do was cry (publicly) and scream (privately) and hope against hope that a new day will dawn...

I'm feeling some better now, but it's a "false" better, sort of like the eye of a hurricane...tomorrow will be really bad again...the resurgence of the storm will be worse than ever.

Pray for me tonight,

1. That tomorrow may be a better day.
2. That I may achieve wisdom and peace in my life and with my situation,
3. That no matter what comes, I will be able to face it with the strength and dignity I, God, and my friends have come to expect of me.

Today was really, really hard.

P.S. A note about "If there's anything I ca ndo for you, let me know."/"What can we do for you?": Despite appearances to the contrary, this is actually not all that helpful. This statement, usually made when I'm hurting too much to think, requires me to come up with something for you to do. Offer specifics, such as

1. Help with my backpack/laptop
2. Doing my laundry
3. Bringing me meals
4. Helping clean my room
5. Running errands
6. Hugs, hugs, hugs.

These are all things I would appreciate help with, but (except for the hugs) too abstract for me to think of when I'm in the kind of pain where you offer to help.

This Road that I Walk

2009-01-25T21:10:00.002-05:00

Sometimes I feel as though I--scratch that, I really do--walk a path of endless fire and darkness. Today I was hanging out in the bathroom (because the heating system is still down and there were space heaters in the bathroom), so I could see myself in the mirror pretty much any time I looked up. There was a moment when I was hurting a lot, and I glanced at my reflection and saw that my complexion was literally bright mustard yellow. (For those of you who don't know, horrible pain causes your complexion to change color [usually gray or yellow]...my dad judges how much my mom [she has a very similar syndrome] is hurting by what color her face is...bbut is has to be really bad pain.) At that moment, I fully realized how much pain I was in. My entire face contorted as the reality of the pain swept over me: my eyebrows rose so far there were several furrows in my forehead, my eyes popped out almost a quarter of an inch, and my mouth dropped open and stayed there. After a minute or two of that, I forced my face to smooth out as I told myself: "You cannot afford to realize how bad this is. If you realize how bad this is, you will collapse as soon as you get up...and you won't be able to function. Your schedule does not permit that. Continue denying the pain, NOW."

So I crept back under the comforting blanket of dissociation (not allowing oneself to fully feel pain), but still, 'twas very scary.

Just another pot hole on this endless road of life.

Clearing Up Misconceptions (Otherwise Entitled: Things that Make Me MAD!)

2009-01-25T16:32:00.003-05:00

Without going into detail (because, after all, this blog chronicles my reactions to life, not my life itself), all the students of AHA had to stay off campus Thursday-Saturday. I spent Wednesday night, Thursday, and most of Friday with a lovely day student and her family, but she doesn't keep Kosher or observe Shabbat, so Friday afternoon I went over to the home of a very wonderful modern Orthodox family: "Jacob", "Leah", and their fourteen-month-old-daughter, "Dinah." (Yes, yes, obvious Biblical reference. I couldn't resist.)

I mostly had an excellent time there: "Leah" and I have a lot in common (she's youngish), and I had lots of fun playing with "Dinah." But a couple of sticky situations came up surrounding my pain, and I want to gripe about them.

When I say I do not need help: guess what? I really mean I do not need help. When I say I will tell you if I need help: guess what? This really means I will tell you if I need help. It does NOT mean you should stop asking for right then and then insist ten times that you help me pack up, when I say I don't need your help and can do it for myself. (The solution? You come with me and I'll pack up too fast for you to do any of it.) There are so many things I really cannot do for myself; beyond taking basic care of myself, I really cannot do any of the other things kids my age generally do when visiting other peoples' homes (dishes, meal prep, etc.). Is it really so hard for you to let me AT LEAST take care of my own things?

While we're on the topic...the other day I was hurting so much I literally crashed to fetal position on the floor in one fell swoop. Everyone was startled, and "Sasha" was laughing slightly. I smiled a bit, both because it was nice to be lying down and because the whole situation was so absurd there was nothing to do but laugh. But "Sasha", once she calmed down herself, looked at me and said skeptically, "Sarah, you're smiling..." as if by smiling I was cancelling my right to fall down, or proving that I was not in as much pain as I was showing. Um, excuse me? As my mother says, the fact that I have a sense of humor does not mean I'm not in pain. My humor is a survival tactic; it takes real work to see the funny side. That doesn't mean I'm not suffering.

Also, nice moment from last week: We were all in Liturgy class, and we were sitting in a circle on the floor singing. I was hurting a lot, so I crawled across the floor and curled up next to "John", every now and then reaching out to touch his leg because I needed to feel his presence and support. When I was capable of sitting up, I asked if I could hold his (very large, very strong) hand. He gave it to me and I grasped it; he looked at me quizzically and said, "You're clenching...is...this...?"

I responded, "Yeah, well, I'm hurting a lot. Tell me if I squeeze too hard."

"John" screwed up his face in a very expressive "are-you-crazy" look, and pointed out, "I'm tough."

So with his permission, I squeezed. I needed his support. I watche dhis fingers slowly uncurl, and paranoia set in as I wondered whether he really disliked holding my hand and giving me emotional support...whether he wasn't really as good a friend as I thought he was...whether he just wasn't interested in me...etc. But a minute and a half later: "OK, Sarah, I'm losing circulation."

Ha. Ha. Ha. I am IRON WOMAN!!! (OK, not really. But hey, who knew I was strong enough to squeeze a hand that huge so hard?)

What I am Wearing to Bed Tonight

2009-01-21T20:07:00.002-05:00

AHA's geothermal energy system is down, meaning we have no heat. I thought it woul dbe amusing to preserve for posterity the amount of clothing I am wearing to bed, and listing it might help me figure out more ways to keep warm. Here goes:

1 pair of thick socks (I NEVER wear socks to bed)
1 pair long underwear bottoms
1 pair light weight pajama bottoms
2 pairs fleece pajama bottoms
2 fleece shirts
1 fleece nightshirt
2 sweatshirts
2-3 pairs of gloves
and:
1 comforter
2 blankets
(possibly, if I get really cold, a sleeping bag spread over the top)

Take Five

2009-01-20T23:40:00.002-05:00

This is my biggest rule for living a happy life on the road you would like to be traveling. This method keeps me focused on who I am, where I am going, and what is important. I call it "Take Five", because it only takes five minutes.

"Take Five" has a religious (any religion) version and a secular version, both of which I've used at various points in my life.

"Take Five" The Religious Way
1. Make a list ahead of time, written or mental, of things you want to pray for. They can be anything you want, but remember, the pointof this is to get you relaxed and refocused on who and what you are and would like to be. Think carefully; these five minutes will be the most meaningful of your day.
2. Pray. Just start talking to God--that's all. Monologue for a while. Sometimes God will answer right then and there (you'll feel it); sometimes you'll see tangible results a day or two later; sometimes you'll just feel more relaxed. Consider any of the above an answer to your prayer.

"Take Five" The Secular Way
1. Focus on your inner self. Clear away all thoughts. I recommend learning self-hypnosis, but you can also just breathe deeply.
2. a. If you have studied self-hypnosis (I willnot post instructions here, but they're not hard to find), go into trance. Stay there for awhile. Enjoy yourself.
2. b. If you are not the hypnosis type, just close your eyes, breathe deeply, and empty your mind. Quiet your thoughts and enjoy the rare internal silence.
3. Open your eyes and just sit for awhile. Think about the trance or the silence (depending on whether you followed 2.a. or 2.b.). Consider what you have to do to make yourself feel more relaxed. Plan to eliminate clutter in your life. Think about who you are and who you want to be by the end of the next day. MAke the necessary preparations, physical and mental.

Neither of these methods takes more than five minutes. I try always to "Take Five" before I go to bed. (At the moment I favor the religious way, but this past summer I was really into the secular way.) NO matter what kind of day I've had, After "Take Five" I always go to sleep at peace with myslef and my world.

Holding It All Together

2009-01-18T21:01:00.002-05:00

I just found out (late last night) that I did rather poorly on my last math test. That was partially because there were days when I was literally floating and too tired to study (those I cannot change), and partially because there were days when I was finally feeling better and didn't want to be studying when I could be having fun (those I must change).

It's kind of hard too keep it all together while you're in pain all the time.

The first things to go were my manners: I cried a lot and snapped at people. I got into therapy and fixed those.

Next to go were my relationships: I spent all my time with friends leaning on them with my pain. "John" started pulling away from me; I sensed it and asked him why; he told me, and I fixed that issue. My relationships are still up in the air: There are days in a row when I just don't have the energy to talk or interact much. But when I am feeling better, I have some pretty good friendships.

What's gone now? Now it's my homework. Now I need to pull that back together.

I wish I had the energy of a normal teen, so I wouldn't be always fixing something or grabbing at a loose end. I wish I had the energy of a normal teen, so my life weren't always falling down around my ears.

...I wish.

Winter Ball

2009-01-17T23:36:00.002-05:00

Winter Ball was tonight, and I had a really good time. Everybody seemed to think I looked amazing: all the girls shrieked or swore when they saw me, and one boy in particular kept staring at me from across the room and then came over and complimented me for a full minute and a half. I "danced" using my rollator for several fast songs and actually danced (leaning on the boys) with specific people twice, once because the boy asked me to and once because it was a slow song and I grabbed a friend and told him to dance with me. No, I couldn't stay for as long as I wanted or dance as much as I would have liked while I was there; and yes, that makes me very sad and I might need to cry about it later; but overall I had a really good time.

Here is a picture "Margaret" took of me before the dance.

Perfect Faith (?)

2009-01-15T22:50:00.002-05:00

OK, ordinarily I hate blog entries that wax poetic about God, but I am about to be the biggest hypocrite and post one myself. If you don't like this kind of post, feel free to skip it. In your shoes, especially if I did not agree with my religion/religious choices, I would agree with you.

Now then:

I have always said that Go dworks miracles for us every day if we only look around, find them, and grasp them. I decided I wanted to notice God's miracles for me, so I started practicing. As I've gotten more adept at it, I see them happening every day. Just today, there were two.

1. I was on my way home from school in more pain than I'd been in for a while, definitely a level of pain that caused me to collapse last time. I was limping heavily, very much favoring my right foot (which usually feels worse) and leaning on my left, although it was also in excruciating pain. I had no idea how I would find the courage to keep walking all the way home. So I started reciting psalms. I went all the way through the one that starts "The LORD is my shepherd" in Hebrew, all the way through the one that starts "I will lift up my eyes to the hills from whence comes my help" three times in Hebrew, all the way through "The LORD is my Shepherd" in English, all the way through a hymn entitled "Master of the Universe"/"אדון עולם" in Hebrew, part way through the Shema in Hebrew, and all the way through "The LORD is my Shepherd" (LOVE that psalm) in Hebrew again. By that time I was home and I could just collapse on my bed. Notice: I did not fall once on that walk, and I was feeling much better than I had expected to.

2. A new student arrived at our school tonight. I had been praying for days that I would be feeling good enough physically, and confident enough, to make a good impression on her, and I did! She really liked me. I could tell.

I still do not have perfect faith in the Orthodox Jewish sense of the word, nor do I aspire to. I do not believe the Torah came directly from God to Moses at Mount Sinai in its entirety, and I do believe that the text has changed slightly over time. I do not necessarily believe the stories in the Torah are historically accurate, although that does not necessarily mean they are not ture on a deeper, emotional level. Although followin gJewish law is easily one of my top five priorities, it is not the top one all the time.

But regardless of all that...

I am God's, and God is mine, and we walk hand in hand on this journey. I know that I am on the path God wants for me and He will hold my hand and baby me when I need it every step of the way.

This is my truth. It does not have to be yours, but for myself, I know this to be true.

New Blog

2009-01-14T15:31:00.001-05:00

I have not been writing, really writing, for about six months now, but my "writer's block" recently came undone and is now spewing words. Give me a few minutes to create it, then go check out my profile for my new blog that will showcase my writings.

Delurking Day

2009-01-14T09:28:00.002-05:00

So apparently two days ago was Blog Delurking Day. I missed it, but I am doing it now. All lurkers who read my blog but hav enever commented, welcome! Post here and let me know you exist.

"I'm just a kid, and life is a nightmare..."

2009-01-13T22:10:00.002-05:00

[Title from "I'm Just a Kid" by Simple Plan]

I just feel so awful. I have never felt this bad for this long. Always before, I have managed decent sleep, meals, and schoolwork. Let's review where those three things stand now.

1. Last night was my fifth night in a row waking up at least three times due to pain. I'm never awake for more than ten minutes at a stretch, but it's annoying and lonely and leaves me so tired the next day! I'm finding ways to deal with it sort of, by going to bed a few minutes earlier and waking up a few minutes later each day, and lying down for about twenty minutes between lunch and class, but even so, my head regularly drops onto the table in class even when I manage to stay awake (teachers usually just let me put my head down), the shadows under my eyes have shadows of their own, and my memory is going crazy. The other night I came down the stairs after checking on my laundry and forgot where I was...it was like the world flipped upside down for a second and I had no context for who or what I was, what I'd been doing, where I had come from, where I was going...it fixed itself in a second or two, but it was disturbing.

2. Because I've been so tired and hadn't quite figurd out how to handle it yet, I didn't eat much last week...I forced myself to eat about half my normal amount (and I never eat much to begin with)...and it shows. I am not supposed to have a sharp, well-defined collarbone and hip bones, and my face is supposed to be rounder than it currently is. I'm nowhere close to starvation level or anything...I have friends who are built much thinner than this and they manage just fine. But the size 0 jeans, which two weeks ago were almost too tight to put on (as teen girl jeans should be), are now sagging below my butt and around my knees, and I can easily slip three fingers between me and the waistband. I am not designed to look this skinny.

3. As for schoolwork, I can barely bring myself to find the energy to work for an hour a night. I have gotten several B's in the past week. I have a Wellness test tomorrow, an Algebra test the next day, and an English essay due the day after that...and I will not do as well as I should be able to on any of them. I've already forgotten three quarters of the Algebra I learned last week.

So, in essence, I'm starting to resemble an emaciated panda bear or raccoon, and I'm struggling to pu tmy life back together as it crumbles into even smaller pieces than it was in by the end of last week. My school work is slipping, I can't go out and socialize in the evenings because by that time of day I just want to stay in my room where everything is soft and quiet, and every afternoon I come back to my dorm and scream like a wounded animal because I can't hold the pain in any longer.

I feel as though I entered one end of a dark tunnel as a fifteen year old and came out as a 25 year old. I have suffered too much for someone so young.

It's not fair.

Noteworthy Event

2009-01-12T20:20:00.002-05:00

Even though today has been a bad day physically and I still feel awful, tonight I am happy, fulfilled, and at peace.

I thought it was worth writing down.

Also, 20 rockets from Gaza hit Israel today. The US house has officially passed a bill recognizing Israel's right to defned itself.

Israel Update

2009-01-12T08:31:00.001-05:00

7 rockets and 2 mortars have hit Israel so far today. In 2008, 3278 rockets and mortars hit Israel.

Keep praying, everybody!

Trying and Failing to Stay Happy

2009-01-11T17:30:00.004-05:00

I have spent my weekend trying to reinstate happiness and youth into my life. Last night I had a sleepover with "Margaret"; today I cleaned my room and did my laundry, and I'm planning to do the homework that's due tomorrow later tonight, but other than that, I have been recreating.

I finished a knitting project and started another one. I finished a book I started yesterday. I've been coloring, surfing the internet, and listening to my favorite music. What's the problem?

I'm tired! Under my eyes, my shadows have shadows! I've woken up four or five time a night, the past three nights, to fix my blankets: they keep sagging in the middle and I can't figure out how to fix that. Every night, before I get into bed, I try something new to fix the problem; every night they sag again. Last night I slept for six hours...and woke up three or four times. Once every two hours!!!

I'm so tired; all I want is a little bit of real sleep so I can gain some energy and strength back. I am so tired...just so tired...

EDITED: I need to go do my homework...I should go do my homework...

Check This Out!

2009-01-10T18:34:00.002-05:00

I have been featured on another person's blog, with some very favorable comments. Finally, finally, my influence is affecting and inspiring others! Yay for dreams coming true! Go to www.blogofpain.com and read the entry entitled "A Normal Teenage Life, With Pain." (By the way, I'm not sure how this happened but they got my birthday wrong: it's not until February.)

I feel like my soul has aged twenty years this week. It is very hard to get yourself out of bed and looking presentable in the morning, and back into bed at night, while going to school each day and handing in all but one homework asignmen ton time, while forcing yourself to eat because you're so hungry your stomach hurts but the effort to put food in your mouth just doesn't seem worth it, while making sure you're minding your manners....all in unbearable amounts of pain that cause you to collapse several times a day. To navigate the world that way requires a kind of maturity most adults have not had to employ. As a result of the last week, I am in some ways a child no longer: something young in me has died.

Now...that being said, I need some fun in my life. "Margaret" and "Jan" are sleeping over in my room tonight, and I will not talk about pain. This may not work, but I am going to try my absolut ehardest to teach my soul to be young again!

Favorite Photo Friday

2009-01-09T12:10:00.003-05:00

I've seen this on several other blogs, and I really like the idea. It is what it sounds like; you post a photo you like on your blog on Fridays. This is my favorite picture from the past week: a bright spot in the middle of the darkness, someone else making me happy.

FEELING BETTER

2009-01-08T19:27:00.002-05:00

Wow...just wow. This morning was tough: I fell twice between first and second period, was too tired to keep my head up for very long, and was very, very scared. I forgot three very important patterns I have seen with my pain:

1. Exhaustion is directly proportional to pain.
2. Deep exhaustion lasts for an equal amount of time as the pain that caused it does.
3. The waves of exhaustion come AFTER the waves of pain.

All of which meant that the exhaustion was not a sign of worse pain to come: quite the opposite. I would start feeling better soon--and I did. Those two falls? Yeah, but they were my only ones today. I lay down for 25 minutes after lunch, which made me more awake for English class. I love English class, and I was awake enough to enjoy it, which gav eme an adrenaline rush that carried me through Liturgy class, Algebra tutoring (I just went this once to get help with an assignment), and visiting a friend who's sick in the health center. I came back and lay down for two hours, then ate dinner, and I think that's all the lying down (until bedtime of course) that I'll need to do today.

Tonight I ha dan actual appetite and wanted to eat for the first time in days...I'm awake enough to do my homework...I'm actually thinking about something other than pain. For the last two days my only three waking thoughts have been: "Oh, God, how I hurt!" "I'm sooo tired..." and "Shut up and do your homework anyway." Now, I am remembering moments with "John" and "Lucy" today; I'm researching international adoption (I have weird interests), and I'm planning how to spend my time after I finish my homework...because I actually have energy tonight! I think I'll start my homework in about fifteen minutes, finish that (I have about an hour's worth), knit and listen to music for the rest of study hall, and then maybe I'll go outside for ten minutes or so.

I am still hurting a lot and deeply drained and exhausted, but the difference is unbelievable. To recap:

1. I only fell twice today...big improvement over yesterday's six times and Tuesday's five.
2. I actually wanted to eat. (I still got hungry Tuesday and Wednesday, but had to force myself to do anything about it.)
3. I did not fall asleep or come close in any class today.
4. I have enough energy to do my homework and something else tonight besides.
5. I can think about something other than pain/exhaustion.

I cannot believe how awake I am, how clearly I am thinking, how little I hurt compared to the past couple days! I knew if I were patient I could ride this out.

Thanks for all your prayers, those who have been praying. Thank God for all His miracles.

Israel Update

2009-01-08T09:56:00.003-05:00

25 rockets from Gaza yesterday. 25 rockets from Gaza today, including one that hit a school in Ashkelon. 3 rockets from the Hezbollah-controlled Lebanon into Northern Israel (!!!) today as well.

Also, the following link takes you to a website where you can send a letter to an IDF soldier or an Israeli citizen living in the warzone. All you have to do is type it in and click "send", and you can include your email address and a picture.

http://www.chabad.org/special/gazawar/letter.htm

Oh, how I hurt...

2009-01-07T17:29:00.002-05:00

(Note: I am a legitimately strong person who does not like to complain unless people ask how I am. This blog, however, is my safe spot to gripe as I like.)

Oh, how I hurt...I hurt, I hurt, I hurt! I fell five times today, and five times yesterday. My average used to be five falls in a week; at the moment it's five falls in a day. I burn day and night, on and on...last night I slept just deeply enough, between midnight and 4:45 in the morning, to be conscious of the fact that I was sleeping and aware of pretty much every time I rolled over. I lay completely awake for half an hour after that, until 5:15 in the morning, when the pain finally calmed down enough for me to get to sleep for real...until I had to get up for school at 6:30. To recap: I am running today on one hour of real sleep plus four and three quarters hours of dozing. That is not a decent amount of sleep.

And I hurt like all bloody hell.

I don't like to ask for prayers, but if you wouldn't mind, please pray that I will feel better soon, as well as praying that I will have the courage and strength to walk God's chosen path for me, not matter what it holds.

Also: 11 more rockets hit Israel today, affecting 1 million Israelis who live in range of rocket fire. Please pray for them as well.

Bad Day

2009-01-06T22:39:00.002-05:00

I thought this picture summed up my day better than words ever could:
Also, thank you so much "Jan" and "Eliana" for visiting me, and "Maya" for the new pair of socks. Thanks also to "John" and "Sasha" for walking me back from school, and "Nina" for getting me to my room...and into bed...and back into bed when I fell off the first time.

War in Gaza

2009-01-06T13:56:00.002-05:00

I just need to get these feelings out somewhere, not on my friends who are having their own feelings...

I am beyond sorrowful that Israel had to go into Gaza on the ground. Not that it wasn't justified: 105 Qassam rockets fired into Israel in the last three days alone justifies war in my opinion. And I am beyond honored and proud to be part of a natoin that can and is willing to defend itself.

But. But. But!!!

A certain quote from former Israeli Prime Minister Golda Meir comes to mind: "We can forgive the Arabs for killing our children. We cannot forgive the Arabs for forcing us to kill their children. We will only hav epeace with the Arabs when they love thier children more than they hate us." I never understood that quote before. Now I do.

War is a tragedy. Period. People on both sides die; people on both sides suffer. Both sides lose great leaders, brave soldiers, little children full of potential, and "ordinary" men and women. I firmly believe that war is sometimes necessary. I believe that this is a necessary, justified, "good" war. But...it's just sad.

I pray for these victims, survivors, and their families--and for peace--every night. I've been crying for them at least once a day. There ar enever enough people to cry for war victims, especially the civilians. The tragedy of their deaths can never be fully expressed.

Another quote comes to mind, one which I'm tempted to attribute to Stalin, but I'm not sure: "One death is a tragedy...a million deaths is a statistic." Please, please, let's not allow the victims of this war...civilian or soldier, Arab or Israeli, male or female, child or adult...to become a statistic. Please.

Please remember.

Thankful...and Prayer Request (not for me)

2009-01-04T22:20:00.002-05:00

I honestly think I have the most beautiful life right now...most of the time. First of all, the number of times people have saved my life, knowingly or otherwise...well, I am not posting names here, but there are four of you, and I bet two of you know who you are.

I have the most wonderful life...so full of creativity, richness, and joy. I sometimes feel like no one into whose life I step ever forgets I was there. My first and most powerfully lasting dream has come true...I genuinely make a difference in people's lives, just by being me.

I am pretty and smart and loving and creative and passionate and funny...and I finally know that, and these are all good things to be! People love me...I have so many friends...twelve friends...twelve real friends!!! My life is filled with creativity and wonder...I am usually working on one craft project, with two or three more in mind, while reading a book or two, while doing my homework, while finding time for friends! Well, OK, on a good day, or on break...not during most school weeks. Still, whenever I feel good enough, I have that wonderful life to go back to. Even on a bad day, I feel the love of my friends lifting me out of my sorrow, and I manage to keep up with my homework. Even on the worst days, I try to feel lucky and joyful...and sometimes I succeed.

I feel blessed!

Now, on a more somber note...please pray (if you pray) for the victims of Qassam rocket attacks in Israel, and their families. Six Qassam rockets hit as many towns just today. Please...if we all lift up our voices, maybe God will listen and stop this tragedy.

I believe in God.

Changes to this Blog

2009-01-01T00:16:00.003-05:00

I am going to delete a lot of my most recent posts, and start keeping a private journal again. No one has offended me; no one is coercing me; this is entirely my own decision. It's just that this blog has gotten way too personal recently.

I will continue blogging relevant posts on the original topic: my pain, how I manage it, and the things that make me happy. I just feel uncomfortable with so many people following my struggles to triumph over my past. That is something I must do quietly, privately, in my own time.

Warning: Evil Amount of Venting

2008-12-14T09:48:00.002-05:00

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

2008-12-11T18:38:00.001-05:00

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)

2008-12-10T23:35:00.002-05:00

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!

2008-12-10T16:25:00.002-05:00

[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

2008-12-09T17:36:00.003-05:00

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

2008-12-09T10:31:00.002-05:00

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...

2008-12-08T12:23:00.002-05:00

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]

2008-12-08T07:19:00.000-05:00

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?!

2008-12-07T22:07:00.002-05:00

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

2008-12-06T23:53:00.002-05:00

[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

2008-12-06T23:09:00.003-05:00

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...

2008-12-04T16:34:00.002-05:00

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!