In the Face. Jealous much? Yeah I thought so. I've taken the loss of Independence very hard. I have had trouble walking since December of 2006, then got worse and worse. I am now in a wheelchair almost fulltime, from the pain that hinders me for walking.
I started to notice the losses almost right away, but god damn I fought it. I would get to know that emergency brake very well. If I didn't have the strength to push the brake all the way at stoplights, I put the car in park on the reds. One day in winter I was driving up a hill and my right leg had a life of it's own, scared the living hell out of me, luckily I still was able to think fast and not panic.
The biggest loss of simple things came all at once, no driving, (partly afraid of the blackouts but it hurts far too much), taking a step or 4, getting any food and drink is impossible for myself, often I need help in the bathroom too. I can't shower on my own. I can't shower period, but still need to be held and helped.
I was well taken care of in San Diego all winter by my dearest friends, and am back home now, being taken care of by the man when he is in town.
Last weekend I took the redeye from San Diego to Newark. That was the easy part. I had a jackass of a Personal Assistant. This is where I was hit over the head with my lack of Independence.
The PA was very rough with me on the airplane chair, to get to the wheelchair. He was harsh and fast and I in teary eyes asked him many times to please
be gentle, I am in alot of pain. He tried to get me to take the shuttle. He wasn't getting me so I started to talk like him.
PA: "Shuttle YES"
Me. "Shuttle No!. Shuttle stairs"
"Yes Shuttle Stairs. "Look at me, I can't walk".
Due to not taking the shuttle I had to change terminals, which entailed going outside, a skytrain and going through security, for the second time. Continuing through the terminal, he leaves me at the gate. However, he didn't lock the chair, nor help me get in the normal people seats. We argued because he was taking the wheelchair, (I had the chair every other time for all layovers), he tried to convince me one stranger would help me, again I had to say look at me, I can't walk.
PA: "You okay you okay." as he's leaving me.
"Not really".
Thank you very much Newark Continental. Your letter is forthcoming.
Upon my return, I really can't do anything for myself. I can dress myself, but only in soft things. I really miss cooking.
I can't go out to get anything for anyone. I am still self conscious in the chair, for the staring.
I don't Look Sick, but I look as though there sure as hell is something wrong.
My muscles have atrophied, I'm still about 90 pounds. I fall.
I was never one to take things for granted, and I am grieving the losses daily.
This disease is evil. I should be at the top of my profession, I am only young still. I suppose I just hit the top early?
Fuck Pride, let it go.
Sunday, April 25, 2010
Tuesday, April 13, 2010
Dance like EVERYONE is watching!
My mother always says I was dancing before I was walking. Hell, she says I was dancing in womb. All I wanted to do was dance, music was all over the house, it was such a gift to appreciate all kinds of music, very young.
I started my first dance classes, tap, jazz, and baton. The tap recital piece was to 'Short People', our costumes were little white pants, suit jacket and top hat. One of the girls never closed her top buttons. I thought she was a slut. I was 5. My mom asked me if I wanted to take other things for a session as she was a dancer too and not wanting to push me into her direction. I was horrible at skating and my father fashioned a crash pad for my wee butt. I took gymnastics, which I liked, but still I just wanted to dance.
I was invited to a pre-professional program at 12, Jazz, Tap, Ballet, Lyrical, Modern. We were also competitive which I thrived on, and the technical exams
were hard, but I consistently ranked at the top of each style in Highly Commended. Feeling your body work, move, be alive - so freeing. To do the pre pointe and pointe, I was in heaven. Luckily I was a rock and roll ballerina and never had to wear the pancake tutus. I leave that for the gents of the Ballet Trocodero.
We performed for the Governor General - Canada's Head of State representing the Queen. Every stage was mine, indoors or out. I danced with my heart, my eyes, my soul. Tyra didn't invent smizing. I embraced every role to the nines. At one competition we were doing a hip-hopish tap number which was groundbreaking at the time. Getting up from a floor series my left foot popped. I suddenly thought that I lost it for the team but got up, kept smiling, and finished the dance. Come awards time, I was in teary apologies to the team. We won first place. I was called out by the judges even with compliments. Noone knew I had a hairline fracture in my left ankle until after.
Bring on the triple threats, I was 15 in my first professional musical theatre company. School, dance, rehearsals, I was in it to win it. I loved it so much.
I started teaching at 17. My mom retired her pro career at 17.
That next summer was the sign of something bad. I was ill with Hepatitis A and Mono. My doctor wanted me to be off for at least 6 months, but I only took off two as I wanted to do college, TV Broadcasting. I was finally strong enough to teach again, it was wonderful. This group of little girls I had were very special to me. They started when they were mostly 5, and with me until graduation. They came with me when I opened my studio, funny seeing my kids drive themselves to classes.
I took them to competitions and wanted them to have the experiences I did.
They came to dance at my wedding even. It's beautiful to see them as successful young women today and we are often in touch. To see them embrace the power, the beauty, winning accolades - every time I was so proud.
Something went wrong. I was having migraines for months, I had a hard time understanding why I was on the floor crying because the studio was on a second floor, and often I had to slide down the stairs. I was 30. I was supposed to be happy, not anxious. I moved the studio to the community centre I also taught at the next year. Teaching a ballet class a changement - I landed wrong.
My feet were swelling, and it hurt so much. I had to stop teaching right then.
My doctor took 3 months to do blood work. These tests changed my life. He diagnosed me with lupus. He was a sweet grandfather type and cried with me because he knew what losing my dance career on a dime was going to do.
I was 33. It's not very nice to take the feet away from a rock and roll ballerina.
I started my first dance classes, tap, jazz, and baton. The tap recital piece was to 'Short People', our costumes were little white pants, suit jacket and top hat. One of the girls never closed her top buttons. I thought she was a slut. I was 5. My mom asked me if I wanted to take other things for a session as she was a dancer too and not wanting to push me into her direction. I was horrible at skating and my father fashioned a crash pad for my wee butt. I took gymnastics, which I liked, but still I just wanted to dance.
I was invited to a pre-professional program at 12, Jazz, Tap, Ballet, Lyrical, Modern. We were also competitive which I thrived on, and the technical exams
were hard, but I consistently ranked at the top of each style in Highly Commended. Feeling your body work, move, be alive - so freeing. To do the pre pointe and pointe, I was in heaven. Luckily I was a rock and roll ballerina and never had to wear the pancake tutus. I leave that for the gents of the Ballet Trocodero.
We performed for the Governor General - Canada's Head of State representing the Queen. Every stage was mine, indoors or out. I danced with my heart, my eyes, my soul. Tyra didn't invent smizing. I embraced every role to the nines. At one competition we were doing a hip-hopish tap number which was groundbreaking at the time. Getting up from a floor series my left foot popped. I suddenly thought that I lost it for the team but got up, kept smiling, and finished the dance. Come awards time, I was in teary apologies to the team. We won first place. I was called out by the judges even with compliments. Noone knew I had a hairline fracture in my left ankle until after.
Bring on the triple threats, I was 15 in my first professional musical theatre company. School, dance, rehearsals, I was in it to win it. I loved it so much.
I started teaching at 17. My mom retired her pro career at 17.
That next summer was the sign of something bad. I was ill with Hepatitis A and Mono. My doctor wanted me to be off for at least 6 months, but I only took off two as I wanted to do college, TV Broadcasting. I was finally strong enough to teach again, it was wonderful. This group of little girls I had were very special to me. They started when they were mostly 5, and with me until graduation. They came with me when I opened my studio, funny seeing my kids drive themselves to classes.
I took them to competitions and wanted them to have the experiences I did.
They came to dance at my wedding even. It's beautiful to see them as successful young women today and we are often in touch. To see them embrace the power, the beauty, winning accolades - every time I was so proud.
Something went wrong. I was having migraines for months, I had a hard time understanding why I was on the floor crying because the studio was on a second floor, and often I had to slide down the stairs. I was 30. I was supposed to be happy, not anxious. I moved the studio to the community centre I also taught at the next year. Teaching a ballet class a changement - I landed wrong.
My feet were swelling, and it hurt so much. I had to stop teaching right then.
My doctor took 3 months to do blood work. These tests changed my life. He diagnosed me with lupus. He was a sweet grandfather type and cried with me because he knew what losing my dance career on a dime was going to do.
I was 33. It's not very nice to take the feet away from a rock and roll ballerina.
Monday, April 12, 2010
Rhian's Crisis
Damned if I do and Damned if I don't
November 25th, 2009
Since I was in the hospital a month ago (when I was blacking out and found by neighbours) or maybe before, I can't remember, new pains, like tendons are being ripped like a cheese grater with fine razors on it. Any time a reach, an extention, no matter how little, it's searing. Getting dressed everyday is hard, and ends up with my flat on my back on the bed sobbing like a weak little thing. I try to ice my hands and feet as I'm getting ready, and I can't even feel direct ice on them.
Latest Rheumy appt - She said the dreaded Plaquinel. Flat out NO THANK YOU. Reasons - It's anti-malarial and almost took my mom who had, let's say a 'bad' reaction. No Sulfa. Also, it causes eye disease so that's another specialist as I watch one more thing disintigrate. It's bad enough the wolf has taken my feet, but not my eyes too. Third - cost. Fourth - takes 3 months to kick in, I'd have to wean off lbp, (Amitriptyline) go through that withdrawl, then on Plaq, then 3 months to kick in. Sounds like fun, yeah?
My shot is still really hurting from two days ago. Odd, always in my right it hurts more than my left.
So at home the man pulls out 'air pillow' insoles the other night, DUDE, this could have helped for months. It doesn't take the pain away, but I am much more steady. At home I'm walking around with maxi pads on my feet, I don't own slippers or anything cushy. Wore them to sleep in also, not terrible, not great, but a little improvement I guess. Last night was amazing! The freedom I felt when I extended a leg, oh it was wonderful. Also one of the best caramel nights.
I still feel my little heart, and I am trying not to give in to an anxiety attack, but I get scenarios now, like just standing, is that going to jump out of my chest and down I go? Or is it the steroids, too many if this or that.
******************************
*
November 17th 2009 CAMERA VIOLATION
Last time I had an ultrasound I was crying on the table, in every position possible, including doggie in a hawt paper dress. Turns out all that was for a camera shy gall bladder.
So I knew that this next one was going to be unpleasant. That's fine, I'm in a hellish lot of pain as it is, as this is truly evil. It's attacking me hard core, yet, I still work, try and be social, and not let the world see the true harshness of it all. Yes, I'm not doing so good at that one now.
My name is called - finally - and I hobble down. The technician says "What's your problem?" Thus puts me in a position to tell a bunch of strangers, alot of them with masks on, that I have lupus. Whatever, it's about time this gets a serious looksie. The technician grabs me and basically pulls me along.
A quick backtrack, my regular pain is awful. Crushing ribs, bilateral pain in hands, shoulders, blades, oh then feet. I can't walk. The pain is on the balls of my feet - imagine standing on a rolling pin with nails sticking out, and lit on fire. So in a nutshell, it's not easy when bedsheets, breathing hurts, forget try to live in a normal world. It can be lonely out here.
The first part is finally over, and it's a bit weird, looking at the monitor I can see everything. The only ultrasounds I've seen are moms-to-be so a bit odd to see a void there. I was okay with it.
I am allowed out to pee, and she asks me back. The bed is in a new position and oh dear god I hope that's for the next patient. I'm to strip right down and get under what is essentially a giant napkin. Uh problem, I have my period and in full Auntie Flo form, heavy and clotty. So no, I don't think I'm getting what she's ordering. She opens my knees, basically fingers me and move my underwear and pad, and she scoffs. I'm cold, already teary from the pain of the first bit, and now quite humiliated.
BOOM. Wand. Yup all up in there. She said it would take 5 minutes, if it was 5, it was forever. She was poking things, and moving others, and stupidly I looked at the monitor. Ew. I'm trying to be strong, but failing. The tears come back. it was all too much. She is holding my knees open because I don't have the strength to do it myself, and she's pushing, hard. My body revolted, I was shaking hard. She asks me if I am hungry. Yes lady, I'm starving because a wand with a camera in my twat is appetizing, and my hand gripping the wall means that I'd love a big juicy steak.
I managed to get out that it hurt, and so so much pain, she didn't say anything in answer. Just kept poking around. When it was over she offered to help me off the bed, still pantless, teary and bloody. Help, read, yank me by my arm off the table.
Manage to get dressed, and get the all clear to leave, she calls me dear, oh how sweet.
Waiting room full of people again, most in masks, and all eyes on me. Yup the stares ain't from my model dance days.
Get in the car, and the flood opens. Hysterical crying. It's a day later as I write this. Still fighting the tears, ribs are bruised, hips, and ovaries are screaming in pain.
******************************
December 16th 2009
I'm drowning at times. I sometimes see a light, and I reach for it. I always almost get there, but then get knocked back more. It's tiring. It's trying to be strong for everyone, who wants to hang with a whiner? I am literally watching myself disintigrate. Gatorade is still vile. I have so much to do, but all my energy is for work. Last time I was in a mall - my standing limit was 10 minutes till I half blacked out in the La Senza changeroom. I hate this cycle. I wake up, think about how to move, but fast cuz I have to pee. So by then it's already major ow. By the time I get to brush my teeth, it's tears. Then I try to get frozen magic bag, sit on the bed, and do the meds. By then, I'm full and exausted and cold. Try to get dressed, in bed, then put the boots on and get used to that feeling.
Then I have to get to work...
*************************************************
April 11th 2010
I never made it to work again. I was 88 lbs. I was bleeding out my vagina and throwing up any food daily since April 2009. The black outs continued to the point where I do not remember december at all. I smelled it come for me. It smelled of darkness and there were no white lights, nothing shiny. I was done. However I wasn't ready for whatever was on the other side yet. I still had my spirit damnit. Christmas came, I have the pictures to prove it. I entered the ER on dec. 27th 2009, unsure if I was to make it out. I waited 10 minutes, the average wait is between 4-8 hours in Ontairo, Canada. I was put right away in an isolated unit, no curtains. I was grateful for the privacy. She wouldn't even let my husband in the room.
My labs come back, my blood is at 60/120. Yep, I was at zero hour they said. I was moved to another isolation unit in the ER, and the blood transfusion begins.
There are videos on my facebook, cause that's how I roll. Luckily somehow I loaded the ipod with comedy. My freckles came back, my boobs kinda filled out, I was feeling stronger. By the 3rd bag of A+ blood, I was hungry, my nurse was a true angel. She made me peanut butter toast, and I could taste it! The metallic taste was almost gone. It was almost fun, I still have that spirit that's not ready to give up. We listened to stuff that made us laugh, even the drunk tank contestants that were brought in by the police overnight were funny. Made it home at 8:30 am, slept most of the day. My 8 month steady period stopped. I stopped throwing up. I will now require 3-4 transfusions a year because I am not making my own white blood cells now. A week later, I left for San diego.
A week from now I go back to Ottawa, Canada.
******************************
April 11th 2010
I never made it to work again. I was 88 lbs. I was bleeding out my vagina and throwing up any food daily since April 2009. The black outs continued to the point where I do not remember december at all. I smelled it come for me. It smelled of darkness and there were no white lights, nothing shiny. I was done. However I wasn't ready for whatever was on the other side yet. I still had my spirit damnit. Christmas came, I have the pictures to prove it. I entered the ER on dec. 27th 2009, unsure if I was to make it out. I waited 10 minutes, the average wait is between 4-8 hours in Ontairo, Canada. I was put right away in an isolated unit, no curtains. I was grateful for the privacy. She wouldn't even let my husband in the room.
My labs come back, my blood is at 60/120. Yep, I was at zero hour they said. I was moved to another isolation unit in the ER, and the blood transfusion begins.
There are videos on my facebook, cause that's how I roll. Luckily somehow I loaded the ipod with comedy. My freckles came back, my boobs kinda filled out, I was feeling stronger. By the 3rd bag of A+ blood, I was hungry, my nurse was a true angel. She made me peanut butter toast, and I could taste it! The metallic taste was almost gone. It was almost fun, I still have that spirit that's not ready to give up. We listened to stuff that made us laugh, even the drunk tank contestants that were brought in by the police overnight were funny. Made it home at 8:30 am, slept most of the day. My 8 month steady period stopped. I stopped throwing up. I will now require 3-4 transfusions a year because I am not making my own white blood cells now. A week later, I left for San diego.
A week from now I go back to Ottawa, Canada.
Live fast die pretty baby. I'm still a fucking rock star, 3 years ago today is when I got the diagnosis of Lupus.
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