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.
I was asked to say everything, and not try to hide it. So I did.
Current Steroid feeling - fight or flight. Or fight AND flight. Like I feel little things running through my body like a marathon.
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.
Whatcha gonna do, life is meant for the 'normals' and I gotta try to live in this world as much as it hurts.
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.
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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