I DID IT!

Remember what I said about being a rebel? Perhaps it's not just that, but I'd like my life back. Or maybe it is. I didn't take the immunosuppressants today because I didn't want to be a zombie, I had big plans.

Despite going back from horrible-I-can't-leave-my-bed I spent today in the usual-horrible-sever-no-good-very-bad-pain which was very welcome. I opted for a day off the TZ's (my name for them) because, I was asked to be a background performer for a new CBC TV series that will start in September of 2011. 

I was asked to pack 3-4 fall outfits, 2-3 fall jackets etc, and a business casual outfit. I don't own anything business casual, just jeans and tanks or fancy dresses, and my old dance teaching clothes. I was first to be seen by wardrobe after I was checked in (home base was a rented apartment) and got changed to full fall clothes in +30 degree Celsius weather. After about an hour, 3 guys still hadn't shown up. The wardrobe woman told the agent/wrangler that Darren was waiting for me reading across the street and we should use him. 

The adventures begin, and I start to call other friends to see if they'd like an escape from their days and make a bit of cash. The wardrobe woman was spunky and fun, and one was in dire need of help. My friend's first advice to me was to wear real underwear. This one should have taken the advice...walking by, we all got full moons. I full on facepalmed, and some of the crew and the other performers laughed. I apologized but really. 

I was extremely nervous about the physical requirements I would have to do, since I still can't do normal easy things, very easily at all. After 3 or 4 hours, we are to walk from the apt (which had front stairs) about a block to a pub (which had stairs to the front door). The crew were dismantling this set, and we just had to do more hurry up and wait (which never bothers me). We were fed, a really nice pasta and veggie bowl. After this we were told of a shooting change and back we go to the apartment (up more stairs and up even more). We snacked more on chips, cookies, and drinks until we were herded again across the street in the shade, which was nice, and me being the rebel I was, I refused to bring the chair - meaning sitting on the ground. Hard enough to get down, impossible to get up from on my own - but I had help from Darren so it was okay (ish). 

Getting to the set, which was a public transit bus and some of us were given props, and we were riding a bus. The people waiting for buses in the area were hilarious, watching them try to board; pushing their faces into the glass and the sheer shock and awe was wonderful. Trying not to react to them was fun. Scene is over, we are back on the lawn, but it's okay because I have help. Until he is called away to do another bit on the bus. No worries, we'll wait for them to get back and head back to the apartment. Unless we get called to the apartment before then, which happened. I'm sure my face fell. I had a very hard time getting up - needed help from some of the performers that we were talking to. They helped me up, across the street, up the stairs but by the second last stair, my body buckled. I was terrified of not being able to control my fall. Thanks to very kind people, I was okay. But by then my body was done. Shortly after that, we were wrapped and changed, checked out and waited for the last of the people to arrive. 

This day was so much more than being in a TV show for a few seconds, it was the ability to do what I never thought I would be able to do again, yes with many alterations I need to learn, but I did it. I have always been a performer, and always in the media - I however disappeared from the stage/screen/anything public for so long. 

Plus, I get my first paycheck in eons for the day. This is such a happy, phenomenal day for what it really means. Hopefully this is just another beginning, not just another beginning of more challenges, more meds, and more crap.

I did it! I am so much more than this illness. I am still me. Love me or leave me.

Roses and Laughter

Mother's Day often comes round every year with many emotions. I have been lucky enough to have the mother that I have. We both say that we raised each other. From day one, it was her and me in the world, even though we did have other family too, but we had this unmistakable bond.

She taught me humour, adventures, to be strong, to move on, to be.
We are best of friends, and still you can't take us anywhere without our rebel streaks and glints in the eyes that come out. Usually followed by fits of laughter and tears. We are very much alike.

When I got so sick, I didn't want this 'adventure'. I found no humour, I wasn't strong, and I hated myself greatly, wondering what I had done to deserve this. I never felt sorry for myself, but it was frightening to witness new terrible things happening inside me, and that I almost fell to the illness already.

We went through a very tough road, to the point where I couldn't have her 'vent' to me about my being so sick. She said that we were best friends, and that's what we do. The hardest thing I ever said to her was, yes, we are, but right now, I need you to be my mom. Snap. She has been amazing in taking care of me. She still sees me for the real me, the same adventurous, humourous, rebel little child I was. I am not just sick. I am still me in here despite us all watching how my body is destroying me.

I know not everyone is lucky enough to have a mother like I have, and things have changed greatly. 

Happy Mother's Day, no matter who you celebrate with. It is a day to celebrate. 

I wonder if my cat got me a card? 

Four Years In.

Four years ago today, my life stopped as I knew it. I was given the diagnosis, cried with my doctor, as he gave me 2-10 years to live.

When I was diagnosed, it was such devastation. Everything I worked so hard for. Done. 

Hearing words, and understanding them are different. There was no mistaking this. It was already very severe as it was attacking hard before we knew what was happening. 

I was to have a doctor's appointment today with the new doctor - ironically in the exact same office that I heard the news from the doctor that discovered it. He told me to go south, and just do what I could.

Funny how things turn out.

The pain never ends, it's complex with many layers of different pains all at once, everywhere. 

It is very hard to not be upset. I've done my grieving, and sometimes accepting, but it is still so hard to live with this every minute of everyday.

To those of you that have been with me every step, I can't say how much I love you enough, and I thank you. 

To those of you that I have met on similar journeys, I'm sorry you are dealing also. 

I'm not waterfalls and rainbows thinking positive will cure me. I am realistic. Pain-free will never happen. Pain-less, will not happen. 

I hope that I am the same person. This did not make me stronger. I have been strong my whole life. It's just me. I'm just sick. Very very sick.

Thank you for sticking by me and holding me up. 

Four years ago today changed my life. We will see what the next six bring.