An Experiment

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

(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

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?

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!

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"

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...

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

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

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.."

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

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

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

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

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

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

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

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...

...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

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...

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

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...

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

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

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

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...

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

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

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

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

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

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

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...

...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

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

Griping

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?

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...

...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

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

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 (?)

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

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

Really Starting to Bug Me

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...

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

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

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

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!