Monday, July 25, 2011


Nothing feels better than having a doctor agree with you.

Had my GP appointment today and again, I am so lucky to have found her. She is wonderful, really trying to get some answers - and is very much on my side. She even says I look great, much better than when I first saw her last year. 

When I mentioned the dermatologist put me on Tetracycline, she said "No, you don't have to take it, it is a horrible medication." Done, awesome. No more TZ's for me. She gave me a prescription med for the
same results wanted but it is a topical cream. However, this is not covered by my current drug plan so full pop is very expensive and we'll have to see what we can do about that.

Again she wants me to increase the LBP (amitriptyline) dose - so I am considering that, but I do not want to balloon up, I know that shouldn't be a concern especially from where I am coming from - but it is a concern, I don't have the funds for new wardrobe if I do. 

She ordered new blood labs, full round of ANA's to see where that is now as the last ones did show possible remission for lupus however that could be false since it was shortly after the blood transfusion. 5-6 vials of blood vampired today, plus other samples had to be given.

Next will be starting the official path for MS testings. I wait for the call to go into the hospital for these rounds. 

Never ending, always a mystery - however hoping for more answers, even if they are non-answers. 

What it is is hard to determine, what it isn't is almost harder. "Are you there doc, it's me, Rhian.

One more tripped out even of the day, I drove home. My usual 3 mile walk round trip - I drove home. A real car. The drive was fine but due to the pain it was hard since the pain in my legs and feet is so bad that I had a hard time feeling the gas pedal - I sometimes had to physically look at where my foot was. Interesting, and much better than before since I never thought I could drive again, this was quite the big accomplishment!

Saturday, July 23, 2011

For What It's Worth.

7 days on the immuno's.

I have decided that I hate them, it is not worth what it is doing to me. 

Honestly I am trying to be very good and responsible - in that giving it a real try with at least a week in and tracking everything I am being fair.

I am not myself, a zombie, the effects are so bad all I want to do is sleep. Once I take the first dose of the day, 500 mgs - it hits very fast, and thank you but it is not psychosomatic. The nausea is right away, very hard. I can hardly move. After the 10 minutes, I am allowed to lie down and just hope I can sleep the rest away. 

The first few days I felt like I had a blood bubble in my throat. I've had headaches worse than any migraine I have ever had - and I got them severely - ones that lasted years. 

My mood is bad, whether that is reacting to the meds themselves or the unknown to what is happening. 

Part of me is saying that I need to go through this so that I can prove to my doctors and everyone when I say I have severe reactions to meds, that I am not joking. I called Telehealth with the long list of side effects I am experiencing yesterday and they wanted to transfer me to 911, so I know this is not just me, nor is this normal reactions. 

I have a GP appointment on Monday, and will hope for some real advice to what I should do. 

Frustrated, sad and pissed off. I know this will never end, until my very end. Not sure this trouble is worth it to put myself through as it seems more harm than good.

Tuesday, July 19, 2011


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.

Wednesday, July 13, 2011


Rules? Who needs them. I've never been a good one to follow rules, however this being so sick crap I might have to be.  My natural instincts is to do the opposite of what I'm told. I'm not a brat, or an asshole, but I don't like being told what to do. I am my mother's daughter for sure and that's why we tend to get into trouble whenever we are together. It's the only life I know.

I got my Immunosuppresants tonight, and the booklet on the rules should be a novel. This will be hard. The pills are huge too, and if I do have to take them with me anywhere the bottle won't fit in my little red purse. Yes I know I have pill separators, and smaller containers but it's the principle.

The rules:
  • If in sun, highest sunscreen/hats/sunglasses 
  • but don't be in the sun.
  • Empty stomach, 2 pills twice a day
  • Do not lie down for 10 minutes after taking the pills.
  • Don't take it at bedtime
  • Nothing containing magnesium, 2-3 hours before or after
  • No Calcium 2-3 hours before or after taking the pills
  • No antacids, buffered tablets, vitamins, minerals.
  • No dairy, or zinc.
  • No iron (This is the big one since I need iron to you know, keep alive).
  • No aluminum - yes including applying deodorant 2-3 hours before or after taking the pills. 
  • No juice
I will really need to track everything that I do.

Tomorrow I start in the adventures of immunosuppresants. If you have a cold or a flu, I love you but please stay away.

Tuesday, July 12, 2011

Today Is a Good Day

"Lupus is a life-altering and life-threatening diagnosis" says Catherine Madden, Executive Director of Lupus Canada.  "This incurable disease impacts and destroys many organs in the body and can cause constant pain, immobility, and organ failure just to name a few.  Lupus is seriously under-recognized and under-funded but dedication to new therapies and new research fuels hope for a cure." 

Imagine my thrill when I woke up to the news that Benlysta was approved by Health Canada today. I was expecting to wait years for Canada to catch up to the United States and England. Not to be a downer, I never thought I would see it be approved or that I might have a chance at even thinking about this.

I have an appointment next week to see what I need to do to see if I will be eligible for this treatment - the first direct Lupus medication in over 50 years. The cost is astronomical, I have never made in a year what this price tag says. That will be dealt with later, once I see if I can be on this.
I will be starting an immunosupressant this week, as much as I don't like pills, there is a bit of excitement inside me to try rather than refusing chemo over and over.

The other bit of good news is since making payments for the mobility aids is very difficult, I have started the process on being approved for a real wheelchair that could be funded - this will help so very much. I will also be (against my pride) getting a walker, so when I do my 3 miles maybe the walker will help and not be as awkward as the chair. 

I still have those damn stitches in my face.

At least the walker is red.