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.

Anything.

This is happening to me. Right this moment.















 

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.

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.

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.

The dancer, the social butterfly and the tv production star.

Time means nothing now. Sometimes, it's really damn nice too. 

It's rather freeing in a sense to not be a slave to the clock. It's a very strange and different feeling, as I have always had my own special relationship with time.

My mom taught me the lesson of punctuality, and to this day, it is important to me, however, I dread making plans of any sort because I have no idea if I can fulfill an obligation, as much as I want to.

Time is a dancer's best friend - from music, to the 8 counts repeatedly, to something I instilled in my dancers too, to respect the time and how to let it work and help them in training and as performers. 

The famous '5,6, 7, 8' is magical - and what some people don't realize is that it is not just catching the beat, it is much more than that. It is to centre, to prep, to BREATHE. There is no random time for the 8 counts, it's there for a reason. On stage, it is also a thing of beauty. Lights, curtain, 5678 and GO! 

The other relationship I had with time was working in television. I had a few Production Assistant positions from ENG (electronic news gathering) for the field to the live control room.  The control room is also it's bit of magic. That is another gift I am so happy to have experienced, it was exhilarating.

 I was in the control room for midnight news broadcast.  I learned in preshow that the sports director needed to pad 2 extra minutes from his runthrough, I learned what was good material to cut if we were going over. It's not a job for the shy, while the director runs the cameras, the PA's run everything - everyone depends on the many time counts.  I had a stopwatch, a digital clock, an analog clock and yes, sometimes yet another stopwatch, each tracking time for many concurrent items. 4 clocks, constant countdowns, constant restarting. It was alot of stress, and I loved it. Half the time I never knew what stories were on the show because each item was a time code. 

I had such a relationship with time, I had a hard time not counting in 8's and 60's. I still do. When I was driving, and even just before blackouts started I would get gas and often stop it at $__.59 and then have to think about it to get to a round number. It was a pain in the ass in winter.

Time means nothing to me now, I sleep whenever I can, I eat whenever I feel up to it. I love the overnights too. Somehow it's so peaceful, finally making it through yet another tough shit hole of a day - just is a celebration. The peace is so welcoming, I WANT to stay awake and sleep all day. The days hurt much more. I understand that people don't understand my time now. It is still shocking that some think I should have a 9-5 schedule. I'm a slave to my body, I crave the night. I crave it hard. 

I ask you, would you not want to do the same? It's a long day in the day, can't do much of anything for myself so why push myself when I really can't? 

I am not lazy, I swear it. I still have a high work ethic, but I am being attacked hard. Life is not easy and the little things are now giant things to deal with.

I have always had a love affair with the nighttime, it is magical. 

I was a social butterfly. I'm just a wounded butterfly now.

Time means nothing. It just is now.

Dear Beauty Queen,

Sunday, May 16th 2010 was the Miss USA pagent, and while I didn't watch, I must adress it.

Miss Oklahoma, Morgan Woolard, said she was cured of lupus. This is part of my letter that I sent:

Dear Morgan,

I hope you are aware of the damage you have done for people living with this devastating disease. I for one am in the fight of my life with SLE and am losing everything as I knew it.

PLEASE retract and clarify that it was drug-induced. Getting off the drugs is no miracle.
You are a dissapointment, and because of people like you, who should know better,
it is damaging when we need education.

If you are in remission, congratulations. Please educate yourself and do something important with your title.

Thank you.

** 

To clarify, there are a few types of lupus, mine is Systemic Lupus Erythematosus, which is advanced. Please refer back to the past posts to see my daily struggles.

The one that Miss Woolard is saying she was cured from is drug induced Erythamatosus - which cause an autoimmune response (the body attacks its own cells) producing symptoms similar to those of SLE. There are know 38 drugs that can mimic SLE symptoms, and once stopping the offending drugs, the symptoms are stopped if not reversed. It's a miracle!

Don't get me wrong, I am happy she is well, as you know I never want to wish this upon anyone, however, this just is heartbreaking as lupus is so so misunderstood. I feel her words did more damage than good, this shit ain't no flu, honey.

Other campaigns are all over the media, we need the real education out for what this really is. People are still unsure, doctors are baffled, and unless live with it, or know me very well, you won't truly know. That is what I am asking for help.

We NEED to get the word out, not by House, not by Miss Wollard, but by real sufferers. NOW.

We do not have the time anymore. 

Lupus is the little community theatre star, while the big dogs with awareness - cancer is the oscar star. 

I ask for awareness, education, and the truth. I have heard some horrible assumptions out there. 

Ask me anything regarding this illness, maybe read the Spoon Theory www.bydls.com as written by Christine Miserandino Donato.

My heart sank by Miss Woolard's blanket statement.

I would love no further illness from treatment.

We need you, I implore (see I am serious!) my Rhiarmy to do whatever you can in the help to spread the word, May is Lupus month, great time to start and to keep it going. 

 Someone you know and maybe love needs a cure. Including me.

 Thank you.

 

 

 

 

 

Anger as Beauty?

 I have no doctor again. My GP suddenly left her practice, and the ER thinks her and the rheumy are on crack. My blood was drawn every 2 weeks yet didn't do anything even seeing I was at danger levels.


The GP however signed the disability forms, which hopefully will come in fast, however I am not expecting anything for 8-10 months.


I have had to de-roster  myself from the GP with the province, and was put on a Care Connect program. I have a nurse assigned to me trying to match me with a new GP, again this will also take months so my options right now are the ER.  It will be time to go in soon anyway.

Anger as beauty? Some people say so. Some try to get me worked up and angry to show me I am alive. I would much rather laugh.

I have always been a passionate person, and I continuously go through grief stages. 

These are real losses, the pain never ever goes away, something very simple is now a production.

This messes my body, but it can also mess with my emotions.  Today is a particularly bad day. I'm not going to feel better, I want to at least feel happy. A huge misconception is that this is like a flu.

I have a very small family, needless to say blood ain't thicker than water. My father's side has been hard to get on with, they are negative and aggressive. When they say "Are you feeling better YET?" That hurts. I understand this is hard on people, I do. And I am sorry I got so incapacitated and bedridden, right. it was just to fuck with your heads. /smh



I'm in a serious way, I rather not argue about how I am feeling, that takes too much energy.  I appreciate the asking, happy doesn't mean healthy though. 


I've lost everything my body used to let me do, no harm in having some points of laughter in there is there? 

 Anger as Beauty, Hate as Love?


I am angry today, I apologize.


If you know me, you know it's World Lupus Day today, May 10th, 2010. If you don't know me yet, I hope you know that it's a day of awareness, someone you might know or even perhaps love
have the struggle of life every minute. 

Ask away if you have questions. Thank you for the support, laughs and sometimes sharing my tears. 




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