Teenage Males and Sensitivity

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

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

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

I responded, "Because I am in pain."

"But you're always in pain."

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

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

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

Simchat Torah

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

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

Oh, and a picture from the Sukkot Fair:

School Fair

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

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

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

4-Fold

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

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

Blargh...

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

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

Raising Awareness

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

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

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

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

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

Make It Stop!

Oh, my Lord, I hurt like bloody hell. Now, I don't swear very often, nor do I invoke God's name on a regular basis, nor do I enjoy complaining about pain. But seriously, this is absolutely too much for anyone to deal with. My feet are burning from the inside out (they usually burn from the outside in; yes, it makes a difference), and for a while it felt like they were being unzipped. I don't know exactly what I mean by that (it's one of those weird sensations that I can't remember if it isn't currently happening), but that's what it felt like.

I don't know why this is happening...it could be because I overdid yesterday. It could be because of the weather. (??? Haven't found a link yet, but you never know...) It could be totally unrelated to anything going on in my life. All I know is that if this doesn't stop soon I am goin gto EXPLODE. This pain is KILLING me. It is EATING ME ALIVE. I want it to stop! Make it stop! Make it stop!

(I know this isn't my usual upbeat blog post. Sorry.)