I feel like crap. And excited. I spoke to the intake nurse at the Cleveland Clinic about my upcoming 3-day visit. She was so kind, nice, helpful...I felt hopeful after talking to her. It was not a feeling I have been accustomed to when it comes to being seen regarding my RSD. I am hopeful that they will be able to come up with some new options, treatment plans and ideas to make this more manageable, help make my life have more life in it again. I have felt as though I have been put through the ringer more than a few times. I am stretched so thin that I am a gossamer wing on a butterfly. Touch me and I may crumble. I don't have the stamina that I once had. I get crushed by stress and after a day that ran 8 am - 10:30 pm on Friday followed up with work again on Saturday until 1:30 - I woke up Sunday with a nearly text book, completely predictable chest cold, rattling cough. It feels like there is not only lighter fluid lit up in my leg -but also in my chest too. My body does not have the stamina that it once had. It does not have the endurance anymore and I am weary. And I am just so tired.
I am hopeful that Cleveland Clinic has some answers for me, some solutions to help me get my life back. At the same time, I don't want to get my hopes up, I don't want to be let down if they can't get me the results, result or any help that I am so hoping for.
It's the classic catch 22 - if I don't have hope, what do I have? But if I have hope and never find it- then the destruction from that isn't good either.
I'm just weary.
Sunday, November 22, 2009
Wednesday, November 18, 2009
Surprised, still.
I keep thinking - it's been eleven years since RSD has taken over my system...you would think that by now I would be accustomed to the strange sensations, feelings, zings, stabs, aches and pains - to name a few feelings - that I feel each and every day. And yet, each zing that wings its way from the mid-point of my foot up to hip and back down again, each constant throb of tendon that feels as though some rogue fisherman has managed to hook my Achilles and is pulling with all his might to yank the line free, each hot, thick and dripping blood feeling down the outside part of my leg - that is nothing at all never ceases to surprise me. The sensations take my breath away, a sucker punch to the gut each time.
I hate that on bad pain days, I can tell you the sensations that I'll feel- zingers, pings, lightning bolts, throbbing, bone smashed by hammers....but I have only been able to steel myself so much. I have only been able to turn my brain off, turn my emotions off so much. I hunch a bit more at the shoulders, have a little more difficult time catching my breath from the pain, have a difficult time keeping the tears out of my eyes.
In the end, I'm not sure if I wish I was more adapted to the pain, better able to put everything into a steel box and lock it away. Or if I am happy that these painful feelings still elicit emotions and feelings in me -because after all, doesn't that make me somewhat human still? Make me a still at least a little bit....normal?
I hate that on bad pain days, I can tell you the sensations that I'll feel- zingers, pings, lightning bolts, throbbing, bone smashed by hammers....but I have only been able to steel myself so much. I have only been able to turn my brain off, turn my emotions off so much. I hunch a bit more at the shoulders, have a little more difficult time catching my breath from the pain, have a difficult time keeping the tears out of my eyes.
In the end, I'm not sure if I wish I was more adapted to the pain, better able to put everything into a steel box and lock it away. Or if I am happy that these painful feelings still elicit emotions and feelings in me -because after all, doesn't that make me somewhat human still? Make me a still at least a little bit....normal?
Wednesday, November 11, 2009
Be careful what you wish for.
The winters in Ohio brought a pain so severe, so deep and cutting that I honestly wondered if RSD would be what would kill me at a very, very young age. I had read in many places the high rates of suicide associated with RSD, and while I have always had an extremely high pain tolerance, coupled with my "not one of those easy way out" mindsets; never considered myself one to worry about that little scary statistic.
Our first, and subsequently only, winter in Ohio was one of the biggest tests of my personal endurance, faith in my strength and mental fortitude and realizing that I had to find salvation through whatever means necessary. The pain was crippling; an all out assault on my body. I was wracked in hot lava waves, the slightest touch sending me reeling back. I could feel the changes in the atmosphere with the accuracy most reserve for kindly octogenarians living in nursing homes, lamenting about their hips and such. Nothing relieved the pain. Not even methadone. Sure, it messed with my mind, reduced me to a blathering idiot that sounded suspiciously like Anna Nicole, but the pain was still there....I just didn't have the mental grasp to care anymore. I was frightened that if I didn't die from the pain, I would die from offing myself from the pain, or from the crazy drugs I was put on to "cope" with the pain.
After surviving the winter, so began the campaign for better-weather living. The winter punished me in ways I never experienced. I could no longer skate. It made sense then, to look for employment in a better climate. In the end, we ended up in Ghettoville, which brought a new form of pain, punishment, torture and mental anguish. I am left wondering if the torture of the winter in Ohio was worse, the same or better than the torture of the maniacal, unsympathetic, heartless witch I work for. I am now at an institution that lacks in true academic merit, is horribly sub-par to anywhere I have ever worked in my life and defends a woman who bullies, belittles and back stabs like its her job....maybe it is.
I am sick from stress - stress exacerbates my disease and this stress punishes me to a new level. I am not currently living. I am under constant attack - from a twisted little reptile-fan, from my disease and from the strain of trying to keep a happy face on, juggle my medical issues with a job that is constantly making me ill and trying my best to not give up hope that this torture will end soon. The torture of RSD? No, not that. The torture of my job, working for the witch and being stuck in a town that thinks that eye-gauging is an appropriate behavior.
Funny, I hate when those little sage sayings turn out to be so true....be careful what you wish for. I wished for a job in the south, near my family so that I could have support while fighting my disease, have better weather that was not as cruel and better for me, thus (hoping to have less flare-ups). Unfortunately, I did get the job, in the south, near my family. However I work for an institution that was so much better from the outside looking in, working for a twisted, evil Hitler-esque woman, finding that the hurricane/storm season is equally as bad for me as the winters were in Ohio. While I cherish my time spent with my family - I can't comprehend the horrid and disrespectful way with which I'm treated. I wished for this location, this job - and now that I have it - it's the very last place on earth I want to be. I'd take the burning hot torture of weather related pain -the bone cracking, mind numbing, lightning bolt fiery pain any day over this. Why? Because Mother Nature is just Mother Nature. She's nature, she's doing her thing for the seasons, for the cycle of life - not to be cruel, to inflict pain, to show off her untouchable status at an institution that values cruelty. I feel for that Georgia player - I know how he felt - at the bottom of the pile, having Spikes driving his hands into his face, trying to inflict maximum pain and damage. I feel that every time I cross the door into my office.
So, yeah....careful what you wish for.
Our first, and subsequently only, winter in Ohio was one of the biggest tests of my personal endurance, faith in my strength and mental fortitude and realizing that I had to find salvation through whatever means necessary. The pain was crippling; an all out assault on my body. I was wracked in hot lava waves, the slightest touch sending me reeling back. I could feel the changes in the atmosphere with the accuracy most reserve for kindly octogenarians living in nursing homes, lamenting about their hips and such. Nothing relieved the pain. Not even methadone. Sure, it messed with my mind, reduced me to a blathering idiot that sounded suspiciously like Anna Nicole, but the pain was still there....I just didn't have the mental grasp to care anymore. I was frightened that if I didn't die from the pain, I would die from offing myself from the pain, or from the crazy drugs I was put on to "cope" with the pain.
After surviving the winter, so began the campaign for better-weather living. The winter punished me in ways I never experienced. I could no longer skate. It made sense then, to look for employment in a better climate. In the end, we ended up in Ghettoville, which brought a new form of pain, punishment, torture and mental anguish. I am left wondering if the torture of the winter in Ohio was worse, the same or better than the torture of the maniacal, unsympathetic, heartless witch I work for. I am now at an institution that lacks in true academic merit, is horribly sub-par to anywhere I have ever worked in my life and defends a woman who bullies, belittles and back stabs like its her job....maybe it is.
I am sick from stress - stress exacerbates my disease and this stress punishes me to a new level. I am not currently living. I am under constant attack - from a twisted little reptile-fan, from my disease and from the strain of trying to keep a happy face on, juggle my medical issues with a job that is constantly making me ill and trying my best to not give up hope that this torture will end soon. The torture of RSD? No, not that. The torture of my job, working for the witch and being stuck in a town that thinks that eye-gauging is an appropriate behavior.
Funny, I hate when those little sage sayings turn out to be so true....be careful what you wish for. I wished for a job in the south, near my family so that I could have support while fighting my disease, have better weather that was not as cruel and better for me, thus (hoping to have less flare-ups). Unfortunately, I did get the job, in the south, near my family. However I work for an institution that was so much better from the outside looking in, working for a twisted, evil Hitler-esque woman, finding that the hurricane/storm season is equally as bad for me as the winters were in Ohio. While I cherish my time spent with my family - I can't comprehend the horrid and disrespectful way with which I'm treated. I wished for this location, this job - and now that I have it - it's the very last place on earth I want to be. I'd take the burning hot torture of weather related pain -the bone cracking, mind numbing, lightning bolt fiery pain any day over this. Why? Because Mother Nature is just Mother Nature. She's nature, she's doing her thing for the seasons, for the cycle of life - not to be cruel, to inflict pain, to show off her untouchable status at an institution that values cruelty. I feel for that Georgia player - I know how he felt - at the bottom of the pile, having Spikes driving his hands into his face, trying to inflict maximum pain and damage. I feel that every time I cross the door into my office.
So, yeah....careful what you wish for.
Tuesday, November 3, 2009
I think I still dream....
I use to have very vivid dreams about skating. I could smell the ice
(yes, ice has a smell to it & I miss it), hear the sound of my blades
cutting into a fresh sheet of ice, feel the cool, moist air rushing
against my cheeks as I sped across the surface once again light on my
blades. I felt strong, powerful and carefree. And then I would wake
up. And I would be cold from my blankets having falling in a puddle
on the floor, my cheeks cool & wet- but from tears, not the air in the
rink. I'm just not sure if they are tears of joy - from feeling the
freedom & life of skating in my sleep; or tears of sorrow, because
part of me know I'll wake up.
(yes, ice has a smell to it & I miss it), hear the sound of my blades
cutting into a fresh sheet of ice, feel the cool, moist air rushing
against my cheeks as I sped across the surface once again light on my
blades. I felt strong, powerful and carefree. And then I would wake
up. And I would be cold from my blankets having falling in a puddle
on the floor, my cheeks cool & wet- but from tears, not the air in the
rink. I'm just not sure if they are tears of joy - from feeling the
freedom & life of skating in my sleep; or tears of sorrow, because
part of me know I'll wake up.
I use to have that dream at least twice a month....now, I sleep too
lightly from the painto dream; or too deeply from the medicines to
either remember or dream at all.
I miss skating skating the way you would miss an apendage that's been
cut off. At least before I'd have a reprieve with my "nighttime
skates". I keep hoping the dreams will come back. Afterall, what
would I be left with if I didn't even hope for a dream?
Sent from Sara Grimm Cocolin's iPhone
Monday, November 2, 2009
And the Oscar goes to.....
Some days I feel like I missed my calling. I should have packed my bags, hitched a ride west and tried my luck in Hollywood. After all, I have spent the last 14 years of my life living a play - acting out each moment in front of, well, everyone pretty much. I am the supreme actress. I wake up and have to bargain with myself to get out of bed. My body screams in protest, my brain yells at me to just stop, to yield, to fall back into the blissful sleep stupid! And yet, I roll out of bed, my feet pushing down into the floor with each step - feeling as though the bone with shatter, as though our cold hardwood floors have turned into hot lava. I push on, knowing that if I can keep it up, the adrenaline will kick in soon and help me over come the urge to puke. As I sit in silence, eating my cereal, rereading a book I've read hundreds of times before, I have to continually stop my hand from reaching down and brushing my ankle...it feels as though I have blood oozing down the outside of my leg. I know that there is no blood running down the side, I know that when I touch my leg I won't feel blood but I will feel pain from the touch - and yet sometimes I can't help myself.
Somehow, by the time I get to work, I have numbed my brain enough to the pain to put on that blank smile. That half chirpy "good morning" and mumble a sorry I'm a little late. Yes, it's true. I do tend to run 15 minutes late...but then, I figure that most people given the pain I'm in, would throw themselves down into traffic, beg for morphine, or worse...so I figure 15 with a smile and no complaining is really quite a feat.
I spend my day focusing on my walk - am I walking without a limp, am I hunched over from the pain? I smile, reply "great!" when asked how I'm doing...worst case scenario I answer "fine" or "good". I push on, not asking for favors, refusing the opiates that they suggest would help so much, my pride preventing me from getting a handicap sticker.....
And as I sit here and write this, I wonder why I bother. Who am I saving? No one cares that I hurt or don't hurt. I work in a crass environment. I have more and more work piled on me - physical demands and comments about my health that cross the line and all I say is "thank you m'am may I have another?".
I have come to realize that I am not happy with where I am at. I do not enjoy what I am doing. I do not find my work fulfilling, my coworkers are not supportive - they sabotage and back-stab, I am supremely frightened that I am killing myself and ruining what is left of my health for a job that, well, I hate. And for a mission I do not believe in.
I am starting to realize that I need to make changes. In the climate we are in, some changes are easier to make than others. That said, we are not locked into this town (no home ownership for us -thank goodness we saw early on that this town was not where we wanted to put down roots!), I am not going to chain my brain to the job on "off-hours" and I am no longer going to be such an Oscar worthy actress. I am going to be a little more real. I am going to be a little more honest and open.
So, excuse if the next time you ask, I might say "Been better, thanks."
Somehow, by the time I get to work, I have numbed my brain enough to the pain to put on that blank smile. That half chirpy "good morning" and mumble a sorry I'm a little late. Yes, it's true. I do tend to run 15 minutes late...but then, I figure that most people given the pain I'm in, would throw themselves down into traffic, beg for morphine, or worse...so I figure 15 with a smile and no complaining is really quite a feat.
I spend my day focusing on my walk - am I walking without a limp, am I hunched over from the pain? I smile, reply "great!" when asked how I'm doing...worst case scenario I answer "fine" or "good". I push on, not asking for favors, refusing the opiates that they suggest would help so much, my pride preventing me from getting a handicap sticker.....
And as I sit here and write this, I wonder why I bother. Who am I saving? No one cares that I hurt or don't hurt. I work in a crass environment. I have more and more work piled on me - physical demands and comments about my health that cross the line and all I say is "thank you m'am may I have another?".
I have come to realize that I am not happy with where I am at. I do not enjoy what I am doing. I do not find my work fulfilling, my coworkers are not supportive - they sabotage and back-stab, I am supremely frightened that I am killing myself and ruining what is left of my health for a job that, well, I hate. And for a mission I do not believe in.
I am starting to realize that I need to make changes. In the climate we are in, some changes are easier to make than others. That said, we are not locked into this town (no home ownership for us -thank goodness we saw early on that this town was not where we wanted to put down roots!), I am not going to chain my brain to the job on "off-hours" and I am no longer going to be such an Oscar worthy actress. I am going to be a little more real. I am going to be a little more honest and open.
So, excuse if the next time you ask, I might say "Been better, thanks."
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