That title, by the way, is the first in my series of "Song lyric titles": titles written by me that sound like they should be song lyrics. If I get enough, maybe I can combine them into something.
I was in so much pain earlier today: ten times worse than the last time I blogged specifically about my pain level, which was ten times worse than anything else. So I felt about 100 times worse than normal. I literally thought I was going to die; not "kill me now", but "I could drop dead any second and I haven't said good-bye to anyone; I don't want to die". I think my friends think I do that for dramatic effect; one of them said to me, "Sarah, if you say that again, I will do it." To which I (of course) responded, "Please do," and then everyone thought I was suicidal. Uggh. I'll never be able to make them understand, will I?
I don't know what kind of sadistic game God thinks He's playing with me, but whatever it is, He's won, hands down. I don't care what I have to have instead; I want out! (If I could have thought about it at the time, I now know the level of pain that would make me wish for quadriplegia.)
I wrote the following poem while I was sitting there, because...well, as the title says, just in case. I literally, honestly did not know whether I would survive long enough to come out of that.
Just in Case
If I drop dead, bury me on campus.
If I die, remember this is home.
I love you all; don’t ever forget me.
If I die, it was through trying to survive.
God in Your mercy, stop before it kills me!
P.S. "John", if you're reading, thank you for everything today. I was truly so out of it I can't remember what I said; I hop eit wasn't anything too offensive.
Thursday, October 30, 2008
Wednesday, October 29, 2008
Pain Patient Partakes of PSATS
OK, so we all (freshmen and sophomores took the PSATs today. First, an anecdote that I just think is funny:
My number one rule for test taking is one pencil is never enough. It just isn't. Either it breaks, or you lose it, or it doesn't turn out to be a #2 pencil at all, even though it looks just like all the other pencils in your room, which are #2. So one pencil is never enough. Bring two.
My number two rule for test taking is two pencils are never enough. Guaranteed someone else in the room will be having major pencil issues. Either they forgot to bring pencils, or they only brought one which got lost or broken, or they forgot to sharpen their pencils, or their pencils aren't #2 either. Bring three pencils. Give them one of yours. (Rule number three pertains to batteries, and rule number four to food, but we won't get into that now.)
I left my room this morning in full compliance with rules one and two, carrying three #2 pencils and my calculator in a plastic bag. As I was leaving the dining hall, I noticed that my friend "Sasha" had forgotten to sharpen her pencils. In response, she begged for one of mine.
I was, of course, delighted to hand her one because it provided the perfect opportunity for me to lecture everyone on my Pencil Rules. "John" laughed, "Lucy" called me cute, and we all started over to take the test.
By the time we got to the test, there was a hole in the bottom of my bag and *I* now had pencil issues. It turned out OK; I got more from the proctors, but apparently the Pencil Gods don't like it when we rescue their victims.
Now, as implied in the title, here is how this test was unique for me with my challenges:
First and foremost, I really enjoyed the PSAT. I had an amazingly fun time. I love taking standardized test, and this one didn't even count for anything, since we can't qualify as National Merit Scholars until next year. so I genuinely had the most fun morning I've had in a long time.
That being said...
The major lesson I learned today was: Thou Shalt Not Standardize Test With Feet Dangling. I figured putting my feet up would be a huge inconvenience to everyone else, and I was determined to tough it out. I lasted exactly an hour from the time I sat down (about twenty minutes into the actual test) before I was in so much pain I wanted to cry. One of the proctors got me a chair to put my feet up, but by then I was in so much pain that it affected my thinking abilities on that section of the test (not unusual, by the way; until very recently most days were that bad or worse).
I finished with about three minutes to go, so I hypnotized myself to mute the pain before I went on to the next section. I've gotten proficient enough at self-hypnosis that I can relax, go down, "turn off" the pain and come back up, all in the space of about two minutes. It never helps very much, or for very long, but if I can relax enough to do it, it can make enough difference that I can focus sort of halfway off it. By the end of that section, I had to hypnotize myself again; that time, it made enough difference that I was able to finish the test without any "mind tricks". Still, lesson learned: do not try to do something I cannot normally do when it matters most. Or, more eloquently phrased: My contribution to survey results based on ethno-religious group or income level is screwed up if I test while in a lot of pain because I don't have proper accomodation.
My number one rule for test taking is one pencil is never enough. It just isn't. Either it breaks, or you lose it, or it doesn't turn out to be a #2 pencil at all, even though it looks just like all the other pencils in your room, which are #2. So one pencil is never enough. Bring two.
My number two rule for test taking is two pencils are never enough. Guaranteed someone else in the room will be having major pencil issues. Either they forgot to bring pencils, or they only brought one which got lost or broken, or they forgot to sharpen their pencils, or their pencils aren't #2 either. Bring three pencils. Give them one of yours. (Rule number three pertains to batteries, and rule number four to food, but we won't get into that now.)
I left my room this morning in full compliance with rules one and two, carrying three #2 pencils and my calculator in a plastic bag. As I was leaving the dining hall, I noticed that my friend "Sasha" had forgotten to sharpen her pencils. In response, she begged for one of mine.
I was, of course, delighted to hand her one because it provided the perfect opportunity for me to lecture everyone on my Pencil Rules. "John" laughed, "Lucy" called me cute, and we all started over to take the test.
By the time we got to the test, there was a hole in the bottom of my bag and *I* now had pencil issues. It turned out OK; I got more from the proctors, but apparently the Pencil Gods don't like it when we rescue their victims.
Now, as implied in the title, here is how this test was unique for me with my challenges:
First and foremost, I really enjoyed the PSAT. I had an amazingly fun time. I love taking standardized test, and this one didn't even count for anything, since we can't qualify as National Merit Scholars until next year. so I genuinely had the most fun morning I've had in a long time.
That being said...
The major lesson I learned today was: Thou Shalt Not Standardize Test With Feet Dangling. I figured putting my feet up would be a huge inconvenience to everyone else, and I was determined to tough it out. I lasted exactly an hour from the time I sat down (about twenty minutes into the actual test) before I was in so much pain I wanted to cry. One of the proctors got me a chair to put my feet up, but by then I was in so much pain that it affected my thinking abilities on that section of the test (not unusual, by the way; until very recently most days were that bad or worse).
I finished with about three minutes to go, so I hypnotized myself to mute the pain before I went on to the next section. I've gotten proficient enough at self-hypnosis that I can relax, go down, "turn off" the pain and come back up, all in the space of about two minutes. It never helps very much, or for very long, but if I can relax enough to do it, it can make enough difference that I can focus sort of halfway off it. By the end of that section, I had to hypnotize myself again; that time, it made enough difference that I was able to finish the test without any "mind tricks". Still, lesson learned: do not try to do something I cannot normally do when it matters most. Or, more eloquently phrased: My contribution to survey results based on ethno-religious group or income level is screwed up if I test while in a lot of pain because I don't have proper accomodation.
Tuesday, October 28, 2008
"Would you rather..."
At some point, almost everyone asks themselves, or is asked, the following question: "What if I had (insert disability here)?" This can vary among teenagers as "Would you rather _________ or __________?"
For those of us who are already disabled in one way or another, that question becomes "Would I rather be/have (insert disability here) instead of what I'm already living with?" Over the past year, I've asked myself that question about many forms of disability; what follows are my answers.
1. Blind: No, absolutely not. Can you imagine how hard life would be without eyes, and all the beauty on which one would miss out in the world around one? No matter how bad my pain gets, I would always rather be in pain than blind. This also applies to vision impairments like color blindness.
2. Deaf: This one is a little harder to answer. One would still miss out on a lot, but in this day and age, I believe it is easier to cope with being deaf than with being blind. On most days, yes, I would rather be deaf than in pain.
3. Cancer: Yes. Absolutely. No question. It may seem weird, but I can completely honestly say, "I wish I had cancer." Everybody understands that cancer is devastating and that the patient is really sick even if you can't see anything; I don't often get that kind of empathy.
4. AIDS: No. I would not rather have AIDS. I don't like the idea that every little cold could kill me. This is inconsistent with my feelings about cancer, I know.
5. Paraplegic: Depends on the day. Today was goodish: I felt sort of halfway normal. Today I enjoyed slightly greater freedom than normal, and the thought of being paraplegic made me feel claustrophobic. However, four days or even two days ago, the answer would have been yes, I would rather be paraplegic.
6. Quadraplegic: No. I can't begin to imagine the level of pain that would make me wish for quadraplegia.
7. Amputation: For some reason, this is harder to contemplate than quardriplegia. But...nope, don't want this one either.
8. Cerebral Palsy: It would really depend on the level. I knew two little girls once with cerebral palsy; they did have an aid to help them with fine motor stuff, but otherwise functioned fairly normally. I've seen videos of severe cerebral palsy, though; on some level it's tragic. I don't even want to think about this one.
9. Mental Disability (Down's Syndrome, Mental Retardation, etc.): Yes. Yes, yes. Yes, I would rather be mentally disabled. Especially if I were born that way, if that were the only thing I had ever known, I think I could be very happy.
10. Psychiatric Illness: No. Never. Absolutely not. I'm very close to someone with bipolar disorder, and it is so scary for him. I would never want that; never. I don't want my brain to go wrong. I mean, yes, I know, it already has, but so far it's only caused physical pain.
11. Diabetes: Nope. Don't want that either. I can't imagine having to stick myself and draw my own blood so many times a day. No, thank you.
12. Hemophilia: I'm not sure, but I don't think I would want this one either. Maybe it wouldn't hurt me to move around, but I'd have to be so careful that I'd probably be even more limited than I am now.
13. The same syndrome in other areas of my body: These are the areas that I would rather have hurt, that would be easier to deal with than my feet, I think: knees, back, stomach, chest, neck. These are the areas that I feel very grateful are not hurting: hands, shoulders, head, groin. Everything else is open to question.
Hmm...that tallies to eight no's (blindness, AIDS, quadriplegia, amputation, cerebral palsy, psychiatric illness, diabetes, and hemophilia) and three yes's (deafness, cancer, and mental disability), and two that divide in half so I'm not counting them at all (paraplegia and RSD in other areas). I guess I'm fairly well off, if I can imagine eight worse scenarios.
For those of us who are already disabled in one way or another, that question becomes "Would I rather be/have (insert disability here) instead of what I'm already living with?" Over the past year, I've asked myself that question about many forms of disability; what follows are my answers.
1. Blind: No, absolutely not. Can you imagine how hard life would be without eyes, and all the beauty on which one would miss out in the world around one? No matter how bad my pain gets, I would always rather be in pain than blind. This also applies to vision impairments like color blindness.
2. Deaf: This one is a little harder to answer. One would still miss out on a lot, but in this day and age, I believe it is easier to cope with being deaf than with being blind. On most days, yes, I would rather be deaf than in pain.
3. Cancer: Yes. Absolutely. No question. It may seem weird, but I can completely honestly say, "I wish I had cancer." Everybody understands that cancer is devastating and that the patient is really sick even if you can't see anything; I don't often get that kind of empathy.
4. AIDS: No. I would not rather have AIDS. I don't like the idea that every little cold could kill me. This is inconsistent with my feelings about cancer, I know.
5. Paraplegic: Depends on the day. Today was goodish: I felt sort of halfway normal. Today I enjoyed slightly greater freedom than normal, and the thought of being paraplegic made me feel claustrophobic. However, four days or even two days ago, the answer would have been yes, I would rather be paraplegic.
6. Quadraplegic: No. I can't begin to imagine the level of pain that would make me wish for quadraplegia.
7. Amputation: For some reason, this is harder to contemplate than quardriplegia. But...nope, don't want this one either.
8. Cerebral Palsy: It would really depend on the level. I knew two little girls once with cerebral palsy; they did have an aid to help them with fine motor stuff, but otherwise functioned fairly normally. I've seen videos of severe cerebral palsy, though; on some level it's tragic. I don't even want to think about this one.
9. Mental Disability (Down's Syndrome, Mental Retardation, etc.): Yes. Yes, yes. Yes, I would rather be mentally disabled. Especially if I were born that way, if that were the only thing I had ever known, I think I could be very happy.
10. Psychiatric Illness: No. Never. Absolutely not. I'm very close to someone with bipolar disorder, and it is so scary for him. I would never want that; never. I don't want my brain to go wrong. I mean, yes, I know, it already has, but so far it's only caused physical pain.
11. Diabetes: Nope. Don't want that either. I can't imagine having to stick myself and draw my own blood so many times a day. No, thank you.
12. Hemophilia: I'm not sure, but I don't think I would want this one either. Maybe it wouldn't hurt me to move around, but I'd have to be so careful that I'd probably be even more limited than I am now.
13. The same syndrome in other areas of my body: These are the areas that I would rather have hurt, that would be easier to deal with than my feet, I think: knees, back, stomach, chest, neck. These are the areas that I feel very grateful are not hurting: hands, shoulders, head, groin. Everything else is open to question.
Hmm...that tallies to eight no's (blindness, AIDS, quadriplegia, amputation, cerebral palsy, psychiatric illness, diabetes, and hemophilia) and three yes's (deafness, cancer, and mental disability), and two that divide in half so I'm not counting them at all (paraplegia and RSD in other areas). I guess I'm fairly well off, if I can imagine eight worse scenarios.
In my Fantasy Life
What follows is a series of word-snapshots of what I imagine doing, what I would do if I were healthy...
I'm standing in the gym, shooting baskets. I'm not very good at it; for every one that goes in, there are four or five that don't. But I'm having a good time, and I take off running around the gym, dribbling the ball...
I'm at prom, in a lovely blue dress and a cute pair of heels. A tall boy is dancing me around in his arms, around and around, and I can smell his aftershave and the dancing doesn't hurt and I'm over the moon in love as I lay my head against his chest...
I'm playing a part in a musical, not a principle part because I can't sing well, but a part's a part regardless. And maybe I only have a few simple dance steps to do, but I can do them, and people clap for me, and the memory sticks in my head for weeks as a good day...
I'm rolling down the big hill opposite the geothermal energy works, rolling down and down and down, then standing up and running back up and rolling down again, over and over. And I can keep going, just rolling down the hill, for like half an hour, until I get all dizzy. And then I'm lying on my back with the breeze on my face and the clover around me; just a nice, warm, lazy day...
I'm on a walk in the woods, enjoying the beauty of nature, clambering over roots and rocks and streams. I can stay out for hours, just enjoying the world around me, listening to the songs of the birds and singing right back at them. And the song in my heart and the song on my lips melt together to become one, and my feet begin to dance to match the song...
I'm at the mall, shopping for jeans, and I can walk to store after store after store. In the big chain stores, I walk all over just for the pleasure of window shopping. And it's a nice Sunday afternoon with friends and we're just having a good time, and my homework can wait until tonight because I'll still have the energy to do it...
I'm sneaking up behind a friend I haven't seen in a while, because I want to surprise him. I tiptoe silently closer...closer...then break into a run and jump and grab him from behind. He turns around in shock, and I laugh at him, and then we stand there talking for half an hour or so...
Only in my fantasy life.
I'm standing in the gym, shooting baskets. I'm not very good at it; for every one that goes in, there are four or five that don't. But I'm having a good time, and I take off running around the gym, dribbling the ball...
I'm at prom, in a lovely blue dress and a cute pair of heels. A tall boy is dancing me around in his arms, around and around, and I can smell his aftershave and the dancing doesn't hurt and I'm over the moon in love as I lay my head against his chest...
I'm playing a part in a musical, not a principle part because I can't sing well, but a part's a part regardless. And maybe I only have a few simple dance steps to do, but I can do them, and people clap for me, and the memory sticks in my head for weeks as a good day...
I'm rolling down the big hill opposite the geothermal energy works, rolling down and down and down, then standing up and running back up and rolling down again, over and over. And I can keep going, just rolling down the hill, for like half an hour, until I get all dizzy. And then I'm lying on my back with the breeze on my face and the clover around me; just a nice, warm, lazy day...
I'm on a walk in the woods, enjoying the beauty of nature, clambering over roots and rocks and streams. I can stay out for hours, just enjoying the world around me, listening to the songs of the birds and singing right back at them. And the song in my heart and the song on my lips melt together to become one, and my feet begin to dance to match the song...
I'm at the mall, shopping for jeans, and I can walk to store after store after store. In the big chain stores, I walk all over just for the pleasure of window shopping. And it's a nice Sunday afternoon with friends and we're just having a good time, and my homework can wait until tonight because I'll still have the energy to do it...
I'm sneaking up behind a friend I haven't seen in a while, because I want to surprise him. I tiptoe silently closer...closer...then break into a run and jump and grab him from behind. He turns around in shock, and I laugh at him, and then we stand there talking for half an hour or so...
Only in my fantasy life.
Monday, October 27, 2008
Reasons Why I Want to Cry Tonight
I know I don't usually make lists of reasons why I'm sad--in fact I find that depressing and actively try to avoid it--but I have to get it off my chest and nobody (including me) has any time to talk to friends right now because we all have so much homework, so a list it is. Wow. Run-on sentence.
OK, here we go:
1. I took an irrevocable turn for the worse on Friday, really the climax of rapidly going downhill, but I wasn't watching out for it. I now hurt more for longer after I do something I shouldn't, hurt more sooner in the mornings, can do less than I could a week ago, and just hurt more period. I just got my crutches two months ago; already I want a rollator.
2. I'm all behind on homework, because there were a few weeks when I was figuring out how to adapt to pain and forget that I was adapting so I could go on with life. Does that make sense? (It should, because I have now figured out how to do it.) Anyway, I spent yesterday catching up on Hebrew homework, working on a Bible essay, studying for a couple of quizzes, and doing miscellaneous little assignments. As a result, I bombed a Chemistry quiz today, got a zero on a homework assignment I completely forgot about, and didn't start my English essay until the last minute. My grades for this trimester are shot.
3. As we speak, random parts of me feel like they're being stabbed. Right this second, it's a random point on my lower back; as soon as one stops, another one starts.
4. I wanted to play basketball. I planned on it. I really, really did. And now I can't. Some of my dearest friends are on the basketball team, and I'm extremely happy for them...I am also extremely jealous.
This may not seem like many reasons to be upset, but each is pretty huge in and of itself.
OK, here we go:
1. I took an irrevocable turn for the worse on Friday, really the climax of rapidly going downhill, but I wasn't watching out for it. I now hurt more for longer after I do something I shouldn't, hurt more sooner in the mornings, can do less than I could a week ago, and just hurt more period. I just got my crutches two months ago; already I want a rollator.
2. I'm all behind on homework, because there were a few weeks when I was figuring out how to adapt to pain and forget that I was adapting so I could go on with life. Does that make sense? (It should, because I have now figured out how to do it.) Anyway, I spent yesterday catching up on Hebrew homework, working on a Bible essay, studying for a couple of quizzes, and doing miscellaneous little assignments. As a result, I bombed a Chemistry quiz today, got a zero on a homework assignment I completely forgot about, and didn't start my English essay until the last minute. My grades for this trimester are shot.
3. As we speak, random parts of me feel like they're being stabbed. Right this second, it's a random point on my lower back; as soon as one stops, another one starts.
4. I wanted to play basketball. I planned on it. I really, really did. And now I can't. Some of my dearest friends are on the basketball team, and I'm extremely happy for them...I am also extremely jealous.
This may not seem like many reasons to be upset, but each is pretty huge in and of itself.
Sunday, October 26, 2008
Frightening
Life has a way of being frightening sometimes, you know? I don't know how to deal with increasing pain anymore. I'm tired of it getting worse and worse. I actually emailed my Dr. on Friday (OK, I emailed my mom, who forwarded my email to the nurse practitioner--I think--who said she would let the Dr. know) begging her to prescribe me something because I can't live like this forever. It takes a lot of pain for me to get to that point.
I'm tired of my feet burning, on and on and on. I'm tired of walking a path of endless fire. I'm tired of my hands burning if I use them too much, muscles tightening from lack of movement (not a symptom of RSD; lack of movement tends to do that to anyone), and my shoulders developing something weird from using the crutches. I'm tired of never feeling fully healthy, never not hurting, never being able to spontaneously go on a walk with friends...
And I'm scared because this keeps increasing. Not that every day is worse than the last--it's not that cut-and-dried--but average keeps getting worse. I just got my crutches in August; already, I hurt as much or more using them than I did without them before I got them. (Did that make sense? I know what I'm trying to say.) I'm considering a rollator (walker on wheels); I'm considering a wheelchair; I'm begging my Dr. for pain medication...something is very wrong here.
I want it to stop. I want it to reverse. I want to wake up and have it all have been a nightmare. I want it to go away. Where will it end??!!
(Also, I just want to thank all my wonderful friends. Thank you.)
I'm tired of my feet burning, on and on and on. I'm tired of walking a path of endless fire. I'm tired of my hands burning if I use them too much, muscles tightening from lack of movement (not a symptom of RSD; lack of movement tends to do that to anyone), and my shoulders developing something weird from using the crutches. I'm tired of never feeling fully healthy, never not hurting, never being able to spontaneously go on a walk with friends...
And I'm scared because this keeps increasing. Not that every day is worse than the last--it's not that cut-and-dried--but average keeps getting worse. I just got my crutches in August; already, I hurt as much or more using them than I did without them before I got them. (Did that make sense? I know what I'm trying to say.) I'm considering a rollator (walker on wheels); I'm considering a wheelchair; I'm begging my Dr. for pain medication...something is very wrong here.
I want it to stop. I want it to reverse. I want to wake up and have it all have been a nightmare. I want it to go away. Where will it end??!!
(Also, I just want to thank all my wonderful friends. Thank you.)
Determination
Let it not be said that I give up easily. Let it never be said that I take the easy way out. Witness the story of me doing my laundry today:
For the past couple months, I'v ebeen asking other people to carry my laundry upstairs for me, but they're getting sick of it and I can hardly blame them. I decided that today, no matter what it took, I was going to do my laundry myself.
I left my room on crutches, with my detergent between my knees and my laundry bag in front of me, swinging from the crutches and pushing the laundry bag with my feet. I soon saw that this woul dnot work: the detergent kept slipping, laundry was spilling out of the bag, and the whole process was long and painful.
Lik eevery other human being, I only have two hands. I can't use crutches and carry my laundry, but neither was I in shape to walk unaided. Fine. I dropped to my knees, and "knee-walked" down the hall, carrying my laundry bag and detergent. I climbed the stairs on my knees, still carrying everything; started my laundry; and crawled all the way down the stairs and back down th ehall to my crutches.
Let it never be said that I give up easily.
For the past couple months, I'v ebeen asking other people to carry my laundry upstairs for me, but they're getting sick of it and I can hardly blame them. I decided that today, no matter what it took, I was going to do my laundry myself.
I left my room on crutches, with my detergent between my knees and my laundry bag in front of me, swinging from the crutches and pushing the laundry bag with my feet. I soon saw that this woul dnot work: the detergent kept slipping, laundry was spilling out of the bag, and the whole process was long and painful.
Lik eevery other human being, I only have two hands. I can't use crutches and carry my laundry, but neither was I in shape to walk unaided. Fine. I dropped to my knees, and "knee-walked" down the hall, carrying my laundry bag and detergent. I climbed the stairs on my knees, still carrying everything; started my laundry; and crawled all the way down the stairs and back down th ehall to my crutches.
Let it never be said that I give up easily.
Saturday, October 25, 2008
"Living on the never never / Constant as the changing weather..."
OK, so the title is totally plagerized from a song from "Blood Brothers" (the musical, not the band) but it's totally true.
Chronic pain is just as constant as the weather, just that unpredictable. Yesterday was the worst day I have ever had, ever: for no apparent reason. It was so bad I needed a nap at lunchtime, and went to bed at 6:15 and stayed there for 15 hours. There is no real reason for this, unless it's that I wasn't as careful as I should have been...Thursday morning.
Today was good footwise, but my hands are really bothering me. I had to keep taking my ring off because it hurt my hands, and typing this is causing my left hand to tingle and burn. The latest place my pain has spread to is my shoulders and/or upper arms. Like every other potentially painful area (hands, knees, ankles) they don't hurt all the time, but today brushing my hair hurt; I had issues carrying my tallis to services; and I had to stop playing "boom-snap-clap" sooner than I'd lik ebecause my shoulders felt like they were about to fall off.
But the most important part of the title is "LIVING on the never never". Life doesn't end because of a devastating diagnosis. There is always hope, even if RSD is incurable right now; there is always light; there is always happiness if you look hard enough. I've been blessed with a heart that swells with love for all of my beautiful friendships. I am happy; I am living; I am Me. That's enough. I may be very sick, but that's enough. I love my life, and I am constantly amazed at the growth and change my soul has undergone and continues to experience.
Chronic pain is just as constant as the weather, just that unpredictable. Yesterday was the worst day I have ever had, ever: for no apparent reason. It was so bad I needed a nap at lunchtime, and went to bed at 6:15 and stayed there for 15 hours. There is no real reason for this, unless it's that I wasn't as careful as I should have been...Thursday morning.
Today was good footwise, but my hands are really bothering me. I had to keep taking my ring off because it hurt my hands, and typing this is causing my left hand to tingle and burn. The latest place my pain has spread to is my shoulders and/or upper arms. Like every other potentially painful area (hands, knees, ankles) they don't hurt all the time, but today brushing my hair hurt; I had issues carrying my tallis to services; and I had to stop playing "boom-snap-clap" sooner than I'd lik ebecause my shoulders felt like they were about to fall off.
But the most important part of the title is "LIVING on the never never". Life doesn't end because of a devastating diagnosis. There is always hope, even if RSD is incurable right now; there is always light; there is always happiness if you look hard enough. I've been blessed with a heart that swells with love for all of my beautiful friendships. I am happy; I am living; I am Me. That's enough. I may be very sick, but that's enough. I love my life, and I am constantly amazed at the growth and change my soul has undergone and continues to experience.
Friday, October 24, 2008
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.
"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.
Wednesday, October 22, 2008
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:
Monday, October 20, 2008
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.
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.
Wednesday, October 15, 2008
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.
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.
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.
Sunday, October 12, 2008
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
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
Friday, October 10, 2008
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.)
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.)
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