Tuesday, May 10, 2011

How I Spent World Lupus Day

Today is World Lupus Day. I thank everyone that has been spreading the truth about Lupus, and how serious it really is. Thank you to those that have flooded social media and blogs about awareness and education. We all know that this is serious, yet still takes a backseat to the 'big stars' although does so much damage and is usually fatal.

Year 4 into my 2-10 year range I have of living with this, and I find myself in the doctor's office today.

Overall, I know there is not much that medicine can do for me, and in light of other personal battles it is that much harder.

I am so grateful to this doctor that has taken me on. She is very thoughtful and doesn't rush me. Perhaps I am the only person in the universe that doesn't mind waiting for doctor appointments because that shows me she cares about her patients and will take the time they need. That is very important.

I explained the new chest pains, and she is sending me to have more dopplar and echo grams done to see if it is damaging my cardio system and if not then WTF is this now? I will have to go to the hospital again for these tests. 

My blood pressure is low, but it's not very concerning to her - which is nice. I believe it is low because I am just not as mobile. I'm sitting comfortably at 100/70. She even put the description of the pains as 'elephant party'. 

She was kind enough to (I think) discount the papers for my CPP-D - which is the Canada Pension Plan that all Canadians pay into on every paycheck, like EI etc. I was expected to pay double what she asked, and wasn't sure how that was going to happen as it is.

When I asked about Benlysta, (the first new drug in 50 years to directly treat Lupus) she confirmed my fears. Since it is now available in the US, granted by the FDA, it won't make an appearance in Canada for at least 3 years. Not sure that I have that long to wait, so it is daunting coupled with the price tag - making both points very out of reach.

My doctor asked about my specialist, and was markedly pissed off at his handling of me. This specialist said last August that he won't see me until I go to the hospital to see a dermatologist. Even though I have all the signs and blood test markers for Lupus, he wants to make sure that damn butterfly rash is what it is and not just adult acne. Dude, I can assure you this is the malar rash. She insisted that I call (as I did before I left for San Diego) and say that I need to get in to see him, and that this dermatologist issue was silly.

She gave me 3 more refills of the little blue pills, down from 25 mgs to 10 since I split the 25 mgs as it is now. This will help greatly because I have 1 refill left and it is not easy for me to get around now that there is no car. 

The day wasn't terrible, but it always is tough, physically and emotionally. 

As I was going through the papers to get them ready for mailing, the final box was "Patient's Ongoing Progress..." 

The answer she put was Poor. 

Black and white is hard to read sometimes.

1 comment:

  1. Rhian,
    I was reading about Benlysta today.
    I had not made the connection until just now though that this was unavailable for your situation.
    This makes me a little sad.