Saturday, May 29, 2010

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.

Thursday, May 20, 2010

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 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.






Monday, May 10, 2010

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.