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.