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.

Roses and Laughter

Mother's Day often comes round every year with many emotions. I have been lucky enough to have the mother that I have. We both say that we raised each other. From day one, it was her and me in the world, even though we did have other family too, but we had this unmistakable bond.

She taught me humour, adventures, to be strong, to move on, to be.
We are best of friends, and still you can't take us anywhere without our rebel streaks and glints in the eyes that come out. Usually followed by fits of laughter and tears. We are very much alike.

When I got so sick, I didn't want this 'adventure'. I found no humour, I wasn't strong, and I hated myself greatly, wondering what I had done to deserve this. I never felt sorry for myself, but it was frightening to witness new terrible things happening inside me, and that I almost fell to the illness already.

We went through a very tough road, to the point where I couldn't have her 'vent' to me about my being so sick. She said that we were best friends, and that's what we do. The hardest thing I ever said to her was, yes, we are, but right now, I need you to be my mom. Snap. She has been amazing in taking care of me. She still sees me for the real me, the same adventurous, humourous, rebel little child I was. I am not just sick. I am still me in here despite us all watching how my body is destroying me.

I know not everyone is lucky enough to have a mother like I have, and things have changed greatly. 

Happy Mother's Day, no matter who you celebrate with. It is a day to celebrate. 

I wonder if my cat got me a card? 

World Lupus Day - May 10th, 2011

In addition to the severe pain that changes lives. This is real, and can be fatal. We need attention and awareness. We need hope.

Image reblogged from http://whatthejules.tumblr.com/



 

Canada Goes Dark - May 2nd.

Elections Canada reminds Canadians it exists, and will charge them $25,000 for tweeting voting results

The time has come for one the country’s political traditions: Elections Canada trying to stop people from spreading information about voting results on election day. The good people at EC are reminding the nation’s broadcasters, as well as every Internet user, that sharing such information is strictly prohibited, and could earn violators a $25,000 fine. According to the Montreal Gazette, few are thrilled about the prospect.
Full story:  http://tinyurl.com/3jptfmp


Last I knew, Canada was a democracy. 

With social media - sometimes is it the only connection to the world for many, especially for the chronically ill. I have outlined in archived posts about my difficulty with the voting process. 

I have emailed Elections Canada and my MP explaining my troubles that I have in accessibility to vote, and express my right as a Canadian. The application to vote while away is already faxed and in the offices and I am still awaiting any answers. I  take this very seriously. The way to vote via proxy is to go in person to sign many pages in front of a City Clerk. Again, that does not address the access trouble that is the entire point of my issue.

Surely, I cannot be the only one with this roadblock in the entire country. 

Canada, please vote for change. Our country depends on it.  

Fading Away

 "No system is perfect, but at some point society must focus healthcare costs toward the 97% of those that can be cured."

This was a response to my last blog post. Yes I know I am the exception, but it is important to share my story so people can understand what does happen to some - and the misconceptions about universal health care. 

I have had nightmare doctors, the quality ones are very hard to find. The ER doctors are meant to save lives, and despite what I do and need, I do not take advantage of this - as other people do going to the ER for a flu. I have only gone in dire emergencies. 

Some facts about my disability application so far: 

*To apply for provincial disability it is a first a phone assessment, financial only. Gross, not net, and not taking any deductions into account.
*You can try to appeal this, but it is very difficult to even talk to a human.
*Canada Pension is part of what is taken off on every standard paycheck - (along with taxes and employment insurance)
*In order to apply for that, you need to apply within two years of your last work day.
*Despite this is your own money - not a social drain on the 'system'.
*The application booklet is thick, and requires alot of doctors to write - which can cost upwards of $100 per doctor. (see the cycle starting)
*Corruption example - There was a cop (working in the same union branch as me) and he was stealing drug evidence. Got hooked on meth and heroin. He is on full disability and cop pension, no questions asked.
*Canada universal health care is not free. (see my previous blog entries)
*I have had nightmare doctors (2009) that made me slip through the cracks
*At what point does the medical system give up on me? I am not depleting any social financial systems. Everything I do is paid out of pocket. Hard on zero income.

So if it is common consensus that I am of the 3% that has no hope, then I am just waiting to leave this earth? I am not giving up. The system is set up to give up on those of us that are deemed hopeless.

Thank you society. Very much. I hope it's not much longer I have to deal with you then so you can carry on. Awesome.  
 

Debate

Really? Yes, I have lost just about everything. And possibly more.  Yes I am from the highest taxed country in the world. Canada health care is free until we get sick. Consider this. Canadian wait times, I know this is over 6 months - I have been on the waitlist for specialists, from specialist orders for over a year. Am I terminal? Yes I am. People die on this plan. I can't afford the meds scripted, it's not free. I have severe allergies to most meds, so I refuse to put out money that I know will be not helpful. I am slipping through the cracks because of the system. I am fighting, and being proactive. The universal health care is not all glitter and rainbows. If you have read my archives, you have seen my journey to date. For that, I thank you.

Four Years In.

Four years ago today, my life stopped as I knew it. I was given the diagnosis, cried with my doctor, as he gave me 2-10 years to live.

When I was diagnosed, it was such devastation. Everything I worked so hard for. Done. 

Hearing words, and understanding them are different. There was no mistaking this. It was already very severe as it was attacking hard before we knew what was happening. 

I was to have a doctor's appointment today with the new doctor - ironically in the exact same office that I heard the news from the doctor that discovered it. He told me to go south, and just do what I could.

Funny how things turn out.

The pain never ends, it's complex with many layers of different pains all at once, everywhere. 

It is very hard to not be upset. I've done my grieving, and sometimes accepting, but it is still so hard to live with this every minute of everyday.

To those of you that have been with me every step, I can't say how much I love you enough, and I thank you. 

To those of you that I have met on similar journeys, I'm sorry you are dealing also. 

I'm not waterfalls and rainbows thinking positive will cure me. I am realistic. Pain-free will never happen. Pain-less, will not happen. 

I hope that I am the same person. This did not make me stronger. I have been strong my whole life. It's just me. I'm just sick. Very very sick.

Thank you for sticking by me and holding me up. 

Four years ago today changed my life. We will see what the next six bring.