Suck It, Dr. House

For Lupus month, I had the opportunity to be interviewed on my experience with lupus, fibro and RA. It is a very raw look at my life, from when my body started to turn on me and the entire story. 

Please do listen to the show, share it, and comment. It is important to spread awareness, and have the REAL stories come to light.

Thank you for sharing and supporting. 


The show is found at www.uncast.net - Show #206 - "Suck it, Dr. House"


Thank you Daniel and Victoria for allowing my voice to be heard. 

The HorribleNoGoodVeryBad Tests

When nurses, techs, doctors are honest when things could be hard, I much appreciate it. I would much rather honesty then sugar coating.

As was the case with today's tests. I woke up at stupid o'thirty and went in for Arterial Brachial Pressure and Peripheral Arterial, the second part to last week's DVT. I knew from research and talking to medical professionals this would be a tough day.

I wore the super-fly paper dress, and again, remembered real underwear. My technician was a bit brisk, but she became very kind and explained everything as we went. She told me it was tough, and will take over an hour. 

She started by putting blood pressure cuffs on my arms and legs, and attached a mic and wand to each cuff, and started the tests, lots of squeezing and pressure, and release, repeat. The machine recording the the test was so loud, and quite disconcerting. And it hurt. I try to think I am strong, but when air hurts on a good day, this sent me flying. I concentrated on trying to breathe properly, and let her do what she needed to do.

She took off the cuffs once she asked me if I prefered, normally they keep the cuffs on the entire time, but I was thankful that she took them all off for the remainder of the time. Similar to the DVT tests, she followed my arteries from my groin all the way to my calfs, searching for my arteries and anything abnormal. This hurt. The pushing by my knees and on down was very tough. When the machine stopped making noises, I tried to not worry what that meant, as the bed was raised and lowered the entire time. She had trouble finding my lower arteries, but she said that was because I was so tiny, so everything was tiny. She just said that was how I was made..it was kind of endearing when she smiled at me so warmly.

With a towel she helped me get the gel off, and to sit up. I was terribly dizzy. Good news is there are no evidence of clots, however the possibility is that my arteries and veins are seizing. She also mentioned the potential of MS on top. I needed help to get dressed, and home to sleep. 

I am currently in so much more pain, than the usual horrible. I need help with everything. This is my body in some kind of shock after being in some kind of trauma. 

This may take weeks to get over. Thank you everyone that sent me love and well wishes today, it helped to try to stay strong to get through it all. 

Someone you love and know has lupus, and it is made better by love and support, to get through every day.  

Where did I go?

A bit ago tonight, I was in bed, watching So You Think You Can Dance Canada and somehow, I very quickly got very lost, and very confused.
It didn't last for long, but it was frightening enough. My pain is high, my sleep is messed, nothing new here, just the intensity. I've been twitchy and been fighting an anxiety attack for hours.

I've had a migraine for a few days, again, nothing new, but I got lost. I got lost, in my own bed. I was told that I just disappeared, and I remember hearing 'where did you go'.  I don't know where I went. 

I don't know. 

Last August, I started my downturn. This was the time where I had chemical burns on my both my hands from the topical analgesic. I was still not eating, and iron was very low. 

Standing at the wedding, I started to feel like I was going to pass out, I thought it was the sun - as I haven't been in the sun much at all since I got diagnosed. It was all the strength I could do  to stay up, like hell, was I going to pass out at the wedding. Like hell. 


That was the first notice something started going very very wrong. 


I was too damn strong. I started the black outs, and usually I was caught. I had to walk down 10 flights of stairs one day, on my way to work, this is the first time I was found by my neighbours. I went back to the apartment, begged them to not call the paramedics. 


The blackouts continued. I couldn't park at work in the parking lot, or in the driveway, I had to park outside on the street. I often couldn't get out of the car right away, and fought blacking out right out front of the doors. 


I was living off freezies to at least keep myself hydrated. 


October 23rd, 2009 I blacked out again, in the elevator at home. Luckily there were two neighbours with me, and woke up to being on the ground, on the ground floor, with people around and the paramedics. They brought me into the bus, and again, begged them not to take me to the ER. I lost that fight, and was in the ER shortly after.


Since then, they got increasingly worse, and more frequent. I am so very very lucky that nothing happened when I was driving. I kept pushing, too hard to keep normal, working, running errands - luckily for me - strangers were very kind to me. Almost everyday that I was out on my own, I suppose I was so visibly in distress that strangers stopped to help me. 


Losing where I was for a bit tonight was enough of a scare. It doesn't feel like a black out, it feels like I dissapeared. Nothing tangible. 


I need to sleep. I want to sleep, for a while. 


I love August, but I am terrified. 


I'm fighting everyday, even though I want to sleep for a few days at once. This is not me. I don't know where I went.


I'm so tired. 

Of so much. 

I'm getting afraid.

Of so much.