Friday, July 30, 2010

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. 


  1. I am so sorry you have to go through this. You have such a lovely soul.


  2. loving you. thank you for sharing. peanut gallery.

  3. He sounds lovely!!!

    I am also a medical mystery hot mess so I feel your pain babe. I'm also stuck on the couch unable to move my sad ass. I'm lucky enough to not have hypermobility, but I know someone who does and it makes pain extra awful for them.

    Sending lots of love your way hon!


  4. dear Rhi,
    I first heard about lupus from your phone call on the KATG podcast. A few years later, I happen to be carrying the same problem on my back.

    Im ecstatic to read your blog entires whenever they come around because they provide me hope.
    You are an AMAZINGLY strong person and I send infinite love to you.


  5. As someone with EDS I really hope the hypermobility is from being a ballerina.
    You are the greatest rockstar for managing that bathroom.