Rock On

My new specialist has a lovely face. He is quiet, and adorable, gentle yet strong. He is the lupus specialist in the city, and I was put on the cancellation list - so I went in at 8 am one day this week. 

Yes, I went in at 8 am. That is another story.

Just one testament to his reputation, he called my new GP's office and had parts of my chart and my latest blood labs faxed over while I was in the exam room. He had them in his hands within 10 minutes. 

We spoke alot.  He put me on the table and did the trigger point test which is so very painful (please remember something so little as bedsheets, or a breeze hurts) and he used the reflex mallet on my body.  I got 14/18 so he says for sure fibromyalgia (which we knew) and said my hemoglobin is good,  although my GP thought the red blood cells were damaged (or not producing now, as are the white cells) but the levels were good - or at least not at a danger level but is still serious enough to watch close.

 He asked about plaquinel and prednisone, but didn't prescribe anything yet, which again I was very impressed with. He went over my labs with me, and more and more questions - all  that point to lupus. My labs are a mystery. To no surprise. I'm still an epic hot mess.

He said for as much pain as I am in I am hypermobile. Which is what my OT said Friday (dystonia) so although I am hyperextended, he isn't sure if hypermobility is from the ballerina in me or not.  

I'm deciding ballerina. 

He sends me to another building for blood labs, even though there is one in that same one as his office. I ask him if I can just go there, and he tells me he doesn't want me going there, but won't say why. This is just another challenge, I must know why...

At this new lab, I have to pee in a cup. I'm getting quite good at it, thankyouverymuch.

There is only one washroom for the entire first floor, and it's for staff and public alike. It is disgusting with two stalls. The key is on a sample cup, how cute, right?  Talk of just going home to pee was a quick conversation, somehow I manage, walking in myself, avoiding touching anything but myself, almost falling in, but hell yeah, rockstar I am, peed in the cup, and I don't think I caught anything else in the process.

The phleb nurse offered to take my blood in the wheelchair, and I said no, thank you, I can get into the other one.  I stood up I said my "It's A Miracle!"  I thought she was gonna pee herself laughing. 

She was bitching about the bathroom, and she said in the end "what is wrong with people?" I said, I know, I mean you kiss your mother with that mouth? She laughed her ass off again.

I've been in extra severe pain this week since. I have braces for my knees to keep them in place as they are wanting to twist out, especially when I spasm in the twitchies.

They put the rush on the labs. I have to go in ASAP, which ends up as middle of next week to get the results from the GP. 

This mystery never ends. It is very confusing, and very hard on the soul. 

I thank you for walking this journey with me. 

Shiny Tings

There is a new shiny button on the right, which requires some explanation.

Despite all the claims that Universal Health Care in Canada is free, it still has costs associated with it, and I do not hold extra insurance nor am I on any social assistance.

As I am unable to work I have zero income coming in, and I have costs to maintain - such as my prescriptions, some appointment costs, and managing day to day.

I thank you all for the continued love and support, and please know that it is invaluable to me. That you are with me on this journey is more than I can express.

Thank you.

The Crash.

Suddenly it's Wednesday. 

I got my wish. 

3 days last week I felt pretty okay, meaning I could do some things, like go out to the balcony, and open the door myself. It was glorious. I wrote that I looked alive.

This week is the crash. 

Saturday I reluctantly tried for sleep at 5 am.  By Monday, I had about 4-5 hours of sleep in the past 48. The crash is not unexpected but the intensity is.

Let me explain. On 'good' days, I can do a little bit more and I celebrate each like a victory. I still can't do much, pain is high, and I might be happy but that in no way does mean I feel normal. Not that I recall what that is like. My good days still mean I am bedridden. I spent Saturday and Sunday nights doing something I love, which is the podcasts - one I cohost and one I am an invited guest.

Monday, I fell. Not to the ground this time, but I was too ambitious, first time since I've been back I tried to use the toaster. I fell, into the counter and bounced back into the stove. I didn't cry right away, but it was a shock. Pain shot through me, ribs shifted, and my legs just gave out. I feel like a failure again.

The blackness takes over with no warning, and pushes me around. I can almost hear it taunting me, laughing.


The 'twitchies' are fairly new, and they are rather disgusting. I have no control, and it hurts. I'm just a glass little thing, and it keeps shattering me. I can't sleep. I lie awake, helpless. I've been in tears for days. Each twitch takes my breath away, and I cry a little bit harder. 


How in the hell do I of all people have no control of my body, it's what I am supposed to do. I twitch, I shatter, I cry.

Nothing but a silhouette of a dancer. 


I willed it to be Wednesday - I willed myself to sleep the days away, which I didn't do completely. 


Why Wednesday? I wanted two days of it to attack without my feeling it. I felt it all. But I did it. I made it. Somehow, I keep making it. Despite this hell, something keeps me holding on. The love and support far outweighs,  and it is that that I cannot thank you enough for. I am holding on.


I will watch my dance show tonight, and for a little while I will feel like that ballerina, even though a frozen in time one. 


I don't like to live in the past, but live in the now, and the near future. 

I'll just be one step behind you.







                                                      








 

I Smell Like Sunshine.

"My OT says..." My Occupational Therapist wants me to say this alot, to my doctors, to anyone that may be part of my health team. 

I have a health team now.

My mind might explode. 

She came back to see how I was with the new mobility aids, and truth, not so well. I dangle and fall off and into the toilet with the extender, (I should keep it just for the laughs) and my awesome pole in the living room helps so much, but I don't think I am out there enough still to justify the cost of it, so it will go back as well. 

She suggested exchanging the wheelchair for a transport chair. I love this idea. It's alot smaller, and lighter, (and much cheaper). It has 4 small wheels, and I will need the deepest one because I have long legs. 


I asked her if she knew anything that could help with the twitchies - they have been super worse than usual, almost non-stop this entire week. She had me apply heat above the impact points, and I don't want to say this outloud so whisper this - I haven't had much twitchies. I showed her the Voltaren gel from my GP, and she thought I could have it made at a chemist - happens to be one a couple of blocks from me. 


She wants me into the Pain Clinic - and again to tell my doctor that "My OT says I should go inpatient or outpatient - but to go".  


I asked her if there was anything I could do, since I was so active as a dancer, that I am afraid TLC will come here to do a special on me as the great bedridden 700 pound lady. She did laugh, and said I am far to petite to worry. She mentioned aqua classes, but she said she doesn't want me doing anything (I'm still so severe) except working on the sit-to-stand.  That is more than enough on this wee body.


She is coming back next week.


I used to be a sun worshipper. I know it isn't good for me and normally after 5 minutes I am nauseus and down for days. I made it to the balcony all by myself. It is far from my bed, and I packed a bag with my two phones, my new faery book (recent gift from a dear friend) and ipod. Opened the heavy door, and stepped out, shaking.


My intention for 10 minutes lasted almost 70. I am pink! I look alive. I am so happy. My book told me I am the Queen of Laughter. "She is always ready to leap joyously into a situation, and fluttering her wings as she lands in your soup, on your clean shirt or in your serious thoughts.She's out to have fun and she wants you to come with her....In Faery JOY is serious business...when you can't find your keys, stop for a moment, you will hear her laughter in your ear as she shakes your keys.." So you know I'm always going to be around, no matter what. Deal?



I smell like sunshine.

Today I woke up a few times, but wasn't ready to leave my dreams. I was dancing, I was cooking, I was playing and fighting badguys with light. I cured a man that was in a wheelchair. 

I walked again down the hall without holding on the wall. This is impossible and I can't quite believe it was happening. This doesn't happen to me! The pain yes, is there, it never ever goes away, but I want to open up, come out of this fetal position. I want to be strong. 

This number from So You Think You Can Dance hit home. I hold myself like this, my arm is often on my chest, I was falling - I dance in my dreams.

http://www.youtube.com/watch?v=UqzewHPisNw

My OT says she will help to fix me. 

Epic Fail

Is there such a thing as karma? I used to think so. I thought that not quite everything had a reason, but there was something that connected us to people and events.

I keep forgetting that I can't drive now. Back to this independence loss, it sucks. I had a very long involved dream where I was driving on a highway, and kept swerving to avoid a dark tunnel. I suppose that's what the hardest part of the days are like, fighting to stay out of this tunnel.

Yesterday we went out for my mom's birthday dinner. I had some anxiety about  going out. It's just so very hard. The dinner was lovely, but again with the not able to walk, so the wheelchair and those challenges - it comes with it's own set of pains. The restaurant has a few stairs to the dining room, so they haul out a ramp, and there come the stares. I can't take the looks I get. I wish people can be honest and ask me what is going on. I'm more than okay with that. 

We need this awareness - this is truly an evil disease.

Today I am of course, I am feeling the effects. I have new pains in my back, shoulders, arms and hands. But that is okay, I get it. I soldier on. 

The tunnel is tempting sometimes. I wonder if it would be anything, but I remember the blackouts and the entire nothing.

I'm not ready to stop fighting, even though I live in bed, I have no job, no car, all the things that a successful adult seems measured by.

The failure is epic.

It is always hovering, and it is taunting me - luring me to that tunnel. 

To be strong, takes heart and soul. Sometimes it is very tiring.

Strength fail.  

 

I Would Like a Pet Unicorn

And my own forest with my own creatures and my very own rainbows.

However,  my hand I was given has me down this path I'm on.

I am a sick little girl. 

I try not to bitch, and just stick to the facts. I don't intentionally leave things out but it's so so much, I just imagine people would get tired of hearing it. I know I am tired of this. 

I'm just so tired.

The truth is, I'm in so much pain, I've lost so much. However, I have also gained people that truly care, and for that I am so grateful for.

I don't want to hurt people, and by complaining, I feel that is what I am doing. I don't want to cause more hurt. 

I have many scary moments in a day. Everything is such a challenge, even afraid to laugh too hard for my chest popping out or wanting to crack. Some very downright scary moments.

The truth is, I feel like a failure. I am reduced to this - a blob of pain. I am so damn dependent. 

I might have happy moments still, but that is not to be confused with pain free or healthy. 


I will be getting test results back this week. I am both nervous as hell, yet also complacent. I suppose it's what I have to do to be the strong Rhi that I have always been, even when I was little, everyone around me said how strong I was.


I was. 


I am very lucky now however, to have the people in my life that I can lean on, and offer shoulders, a place to cry, to laugh, to be with me and celebrate the past, but ahead with me in whatever future that is held for me. 


Because of this I am continuing to be strong,  maybe will bitch here and there, and come find my pet unicorns with me.


Thank you. <3

Canada Day and the Missing Fireworks

Canada's 125th birthday was one of my favourite times as a performer. I was part of a small invited group to perform around the region all year. Performing on different stages, mostly outside with a repitoire of of pure Canadia - some moving, heartwrenching, hilarious and some number purely painfully cheesy. 

We were invited to perform on a boat on Canada Day itself. Putting on makeup on a boat on the River was a skill in itself. 

The audience was made up of dignitaries, invited special guests, news members and perhaps a polititian or three.    

We timed the start of the show so that it would end just before the National Fireworks, that are set off behind Parliament Hill over the water. Our spot was perfect, we finished the show, we mingled with the audience, and saw many boats suddenly come near us, waving frantically.  We waved back, since it was so nice of them and that is the aquatic etiquitte no?

The fireworks were late, but it didn't matter, we were high of being post performance. They eventually started, finally!
 
The next morning my mom went to get the paper as she archives our lives  in a photo journal living history.  The front page was a picture of us, on the boat with a statement from police, the cause of the delay in the National Firework Broadcast.

We were too close to the firework launch site. Our boat was the trouble - we caused the delay. The friendly boats were police boats trying to get us to move back in time. 

Canada's 125th National Broadcast of the fireworks never aired all because of us. 

This is one stand out memory, that I am so happy to have been a part of. 

Happy Birthday Canada! The land of magical unicorns and maple syrup will always be strong with me.

This Canada Day I am at home, sort of dressed up, watching the festivities. As much as I hate to miss a party, I'm here in my own party.

I'm sure  the broadcast will be on time tonight. :)