Wednesday, June 30, 2010

Escape This!

This is something that not many people know about me.

Officially I am one belt away from my black belt in Tae Kwon Do. I started studying when I was 13, and loved it. I was eventually put onto performance teams, and doing my tests, complimenting my upcoming dance career. I also taught as well, both children and adults, and again did performing teams. I felt so strong and in control. 

This is what is the hardest to get my head around. I feel so out of control, my body is betraying me and there is nothing I can do about it. 

My next door neighbour was robbed yesterday. I feel terrible, I was home, but didn't hear anything but the renovations to an apartment upstairs. I didn't have the TV on during the time, and I didn't hear talking. I love my building for the apparent security measures. 

I am nervous, and trying to remain in control of my alone time. I'm not sure what I can do - since I have no strength, I can't run, let alone walk much. I have bear spray, which I will keep within arm's reach again. I grew up with a packed bag and hair spray by the bed, and a planned an escape route. I cannot escape now. 

I want so much to escape - become in control again. I want to escape the pain, the worries, the everything. I can't defend myself, and I hate that I am so weak. I hate that these thoughts are controlling my out of controlled new self. 

I feel like prey. I have been in emergency situations, yet I am still not used to being the emergency.

Escape. Fight or flight.  Too weak for either.

Thursday, June 24, 2010

I let myself cry

Since the blackouts started and I was on occasion found by neighbours, my building management put me on a high priority emergency plan. Again with those two words. This plan apparently has my information in the fire panel, and at the closest fire house in the building documents. I understand and appreciate it, however the lack of privacy is still hard to get over. 

Yesterday I woke to full fire alarms. I put on some other PJs, which I found hard enough to do. I tried to get to the front door to feel heat, at least put a towel down, but I couldn't get there, and I didn't push it, figuring they will put the plan in place if it was a real fire. If it was, nothing I can do myself.

The alarms stop, I get back to bed. I hear a train, then as it gets closer it sounds like the train blew up. There are no trains near me, nor up this high of course. The sky seems black through the crack of my blind.

The sound was sickening for some reason. I thought I was having another episode for the shaking. This all was within about 3 seconds, and the noise and the world is shaking. Hard. I am gripping my bed rail with all my might and the phone in the other hand. 

This was my second large earthquake (large enough to me) in 2 months. The first one was on Easter Sunday in San Diego - 7.2. This one was smaller, but was a 5.5 as the reports started coming in. 

We don't get earthquakes like this in this part of Canada, the Canadian Shield is not supposed to move like that. It was felt from Montreal Quebec to Windsor, Ontario with the epicenter one hour north from here. 

Minimal damage to things, a crack in the ceiling, and small things knocked over is all. 

I am beat up. Again. Thankful that I was in bed, if I tried to stand I would have many worse injuries I'm sure. 

My ribs and my back are screaming and parts of my back are disappearing when I try to stand. I feel as though I have shin splints. Of course the body is on fire. I have run a marathon, and the anxiety attack returns.

Turning on my front door lobby security channel, I see many people outside. A fleeting thought, I wonder if someone will come up to me, high priority and all. 

A day later, I'm still fighting the anxiousness, and the layers of extra pain on top of this usual everyday horribleness is hard. Breathing is something to concentrate on, and trying to control and go slow and steady so I'm not jarring anymore chest pains.  It's scary, but the pain is more frightening.

I cried.

Wednesday, June 23, 2010

Right this very moment

This is what my current episode feels like:

There is something pushing me through the ground.
My senses are hyper-aware.
And the pain. The pain has me in it's cold dirty grasp.
It is not letting go. 
Something is trying to control my limbs, and pull me away. 
So very heavy.

I am in bed, but it is raging. It is slamming my back.
 I am cognesant yet very cloudy.

This is the scary time.

My feet are past numb.  I try to stand, and they are gone. Yet I feel the   intense pain.  I have veins popping through my skin, my arms are in a tug of war.

My head is hard to hold up, it wants to swing if I look somewhere.

I am being thrown by my shoulders, pushed. I am drowning in air.

I try to breathe, in attempt to control something at all. My chest is screaming.

There are towels under my knees, a beautiful red wrap under my feet.

All efforts to control so I don't fly away, or be pushed and pulled down.


This is happening to me. Right this moment.


Monday, June 21, 2010

La Belle Dame Sans Merci

I am angry. 

I try very hard to not let these emotions get to me, but I am angry.

Welcome into my little meltdown.

I am angry at karma, fate, god, nothing?  What I did to deserve this? Does everything happen for a reason? Bullshit.
I understand I am very sick. I get it. I'm not one to wallow in the pain, I'm fighting it, without painkillers thank you very much. If you read my other entries you understand my fears.

I am angry that I can hardly go to the bathroom myself. I am angry I can't cook, I can't DO SHIT ALL. Understand this. I CAN'T do it. NOT WON'T.

 People, including me, don't understand this hell, so they get angry and make up what they have to.

People are disappearing. 

Fine. I get it. I'm not going to chase. Do whatever you need to. 
I am angry that someone very close to me is already grieving my loss. My physical loss, I am already almost dead to them I suppose, I am not angry at them, but this hurts. It hurts like hell. There is nothing I can do but be there, but I can't be. I can't be there when they are grieving me. How fucking confusing is that. I miss them. Greatly. I want them back.

When did I stop being a person with feelings? I still like to be asked how I am doing, you know it's not going to erupt into a competition or a bitch session. 

I want to yell - there are 17 elephants that made their home on my chest, my ribs are out of whack, I have twisted knees, my feet and shins are a write-off, my spine is being ripped out mortal kombat style, yet still I can feel it being shredded by a razor. My shoulders are being ripped apart, my back is disappearing. That is just the start.

But you know me, you know I won't. 

People are still disappearing, those I never thought that would. Have the respect enough to talk to me about it. I'm not reduced to a potato yet. 

More importantly, there are people stepping up. Somehow, and I believe them when they say in it with me for life.That is invaluable, please know how much that means to me.

Whether that's 7, 3 or 1 year or less. I thank you. You help keep me going. 

I am angry. 

I am hurt.

I am scared.

I am lost. 

I am love.

I am me.

Monday, June 14, 2010

High Priority

A case worker paid a visit today, a sweet grandmotherly woman that assesed me, my status of health and offering  more assistance with the non-profit program she is affiliated with.  I'm now on high priority for an Occupational Therapist. I'm on high proirity for a hospital program that will take months to get in even still. 

She asked pages of questions, can I cook, can I use the bath, can I use a walker. Everything as we went down the list was another slam. I'm really trying hard to accept that I can't do simple things - at all for myself. I'm trying hard to fuck that pride over and over.

I'm sick. I am so very sick.

We've been over what I've lost, and it seems to be more. I was in the meeting for almost 2 hours today, in the living room, and doing nothing but sit on the couch and answer questions. I wasn't alone, luckily. As the pain continued to increase my thoughts get very cloudy. I feel like I am swinging in a giant ship that is going through mud and being hit. Over and over. I was pulling all my energy to try not to look like I was swinging, but I don't know how successful I am. This happens daily. Being awake is pretty overrated.

In addition to the aids that I spoke about already, she offered and really is pushing that I get a Personal Support Worker. So someone to help me up, bathe, get dressed and put something in the microwave. They are not allowed to prepare meals, or do housework, but laundry twice a week is offered.  She also offered Meals on Wheels, which is a great program but I don't think would work for me for many reasons. The deliveries are at noon everyday, and I have so many allergies to foods that I think it would be too much of a risk. The Physical Therapist can offer "Energy Conservation Techniques."  The Occupational Therapist can offer large rails so I can get out to the living room safely.

She is also pushing that I get a Life Line pendant. Yup, I fall and I can't get up. 

Slam - I'm not a ballerina anymore
Slam - I'm 36 years old.
Slam - I don't go outside. 
Slam - I need another transfusion ASAP. 

My feet go from white to blue to red. My ribs are stabbing, I twisted my knees. My legs jump and spasm. My body is on fire. It never stops. I hear I'm High Priority at every turn. I am trying to be strong, but the fact is,

I'm sick. 
I'm so very sick.

Wednesday, June 9, 2010

Silent Lucidity No More.

 I have since fuck'd pride, and had a visit with a physiotherapist. He was very kind, and very compassionate, I was shocked. For some reason kind and nice strangers still shock me. I have had to put my safety in his hands at home. It's one thing being bedridden, but it's another thing to not be able to get up easily or take some steps safely. Often those steps are met with tears.

Mr. physio had a bed rail, and a bath bench installed. He supports the use of the wheelchair, of course. The bed rail is to help me up, not keep me in, although there is talk of one of those hospital rails with the tray coming. At my surprise, the bed rail is amazing. I have no idea why, since my feet still are a write off. My path is this, out of bed, one step to reach the footboard, another to grab a chair (which has heavy things on it so I don't topple over with it) another to the doorknob, and the frame, another to the linen closet door, and then to the frame of the bathroom. That is usually adventure enough for one day. 

The bath bench is a luxury bench, it has an extended seat so I can avoid stepping into the tub, a backrest and a railing. The first time I used it I had some vertigo or a 'sode as I will explain further. It helps, but is very hard to get used to, and I am still unable to shower on my own. When I am alone I can manage as my Nana called a bath in a teacup. Baby wipes are a lupie girl's best friend in the loo. I try to make it to the living room once a day, but there is nothing to hold on to, and I can't use the wheelchair much on my own either, both for the small hallway and the searing rib and chest pain.

The physiotherapist came back to see how I was doing. We sat on my bed and had a great heart to heart. He said, "You are too young to be in so much pain and to deal with all this." I am proud of myself for not tearing up.

To explain what I call a 'sode - short for what I call a 'lupusode', which let me say what it is not first. It is not a flare, it is not a shooting pain. The pain is steady and it seems that I spend a few hours some days in a strange sort of dizzy, like nothing I have experienced before. Sometimes they can be fun, sometimes damn scary, sometimes it is like a lucid dream, others I am confused. Almost as if my body is reacting to the pain, trying to cope while it doesn't take the pain away.

I have been home for about 6 weeks now and have since gained 10 pounds, so I am a full 98. The newest pain is searing rib pain, mostly on my right side. It starts from my back, tightly under my right breast and feels like shooting straight up to my clavicle. Again, it is constant, and it is worrysome. So much so that I gave in and went to a clinic this past weekend. 

Of course being a clinic, we had to pick one issue to deal with. We chose blood. I need a transfusion soon, and I am hoping to get onto a standing order with the ER so that I don't need to jump through hoops as I am now. I am not willing to wait for the blackouts to tell me to go. Monday I went to have the tests done, and I wanted to take a chance and go to the office my lovely Dr. Ron was in, it's quiet, the phlebotomist knows my veins. New nurses were there, and took me right away, again rushed my labs to two-three days. The nurse came back to tell me there was a new doctor taking new patients - in Dr. Ron's old suite, we met, in the same exam room that changed my life. She upped my meds to 2-3 Amitriptyline/night. Today is my second day on the upped dose, and my sleep is a bit better. However, I know that there is no chance that I would function in the grown up world - I am not a complete zombie, yet I wouldn't be able to drive or work on it. What the hell, try it now, what's the worse that can happen, I sleep? 

The new doctor also brought up Lyrica, which is a new med recently approved for pain or arthritis and fibromyalgia. You know the commercials, I will be on my knees gardening in no time!  I'm not buying lyrica, but I am no doctor, I know my body. 

I know there is no pain when I sleep. I can dance again. I can walk and laugh and have adventures! 

I still have my sense of humour that comes out even more when I am stressed. Getting back to the truck after the doctors visit, I stood up from the wheelchair, put my arms in the air and yelled out "It's a miracle!" in front of high school students. It was my third day out in 6 weeks.