100 Followers!

So, it is a very proud day for me! I've reached 100 followers. When I started this blog I wasn't 100% sure what I wanted to do with it and where I wanted to go. Now, two and a half years later I am still not 100% sure but I do know I love writing it and I love it when people comment and tell me what they want to know about.
So far I've met many wonderful people and have managed to accumulate 100 followers!
Zane says he will buy me a treat for reaching this goal. Right now I'm deciding between Leonard Cohen tickets or some new lululemon pants. I've loved Leonard Cohen ever since I saw a show about him in High School. I love his music but most of all, his poetry. My favorite poem of all time is as follows:
“Love is a fire/It burns everyone/It disfigures everyone/It is the world's excuse for being ugly.” by Leonard Cohen.
Thinking about my blog gets me to thinking about my last ordeal in the hospital back in April. It seems like the longer I go between bleeds the harder is it. For the past few months I've felt somewhat normal besides a month long UTI and I've grown accustom to this health life.  Last week I thought I had a hip bleed and I couldn't seem to wrap my head around going into the hospital. I'm praying I can go another 4 months without having to go to the hospital but that's part of the fun I guess not knowing.
Thank you so much to all of my followers I really appreciate you reading and all of your comments Here's to 100 more followers and 100 years of health!

Wheels for the World

So, today Zane and I are curled up watching the Olympics. We are watching the blade runner, Oscar Pistorius run in the Olympics.
Watching this amazing man overcome such a great obstacles reminds me of my friend, Barry.
Barry has certainly had his share of obstacles including Hemophilia and HIV, but being the amazing person he is he decided to do something about it. He began Wheels for the World a bike ride across American to raise awareness about those living with Hemophilia and HIV and to raise money for Save One Life. This non profit organization raises money for those living with Hemophilia and who do not have access to adequate medical care. Read more about it here http://saveonelife.net/.
Barry's goal is to ride more than 3,600 miles and raise more than $50,000.
To date he has raised more than $23,000.  To donate to Barry please visit http://saveonelife.net/wheels-for-the-world-fundraiser-biking.php.
Each day of the race is dedicated to someone we have lost in the Hemophilia community. When Barry heard about my friend John Plater who recently passed away he reached out to me and offered to offer up a day or riding for John.
This is the first time anyone has ever done something like this for Hemophilia.
Every time I see pictures of Barry's smiling face in different locations across the USA I am in awe. Sometimes I get so discouraged I can hardly make it out of bed in the morning but to see someone complete such a heroic, selfless act gives me so much courage.
Please take a minute and donate to this wonderful cause!

John Plater

So, over the weekend we lost one of the greatest advocates we've ever known. I first met John about 5 years ago when I first became involved with the Canadian Hemophilia Society. He spoke at our national youth committee meeting and he was amazing. He was funny, kind, caring and intelligent. Who knew how hard living with Hemophilia is but didn't seem anything but happy and full of life. Over the years I ran into John at various meetings and events. I was always completely in awe him.
John was not only a special person to me but he was a tireless advocate for Hemophiliacs and those living with HIV. He was an amazing Volunteer for more than 20 years and was instrumental in ensuring those affected by the tainted blood tragedy received compensation.
To read more about this wonderful man visit, www.hemophilia.ca.
The Minister Of Health also sent out a press release expressing her condolences, you can read it here http://www.newswire.ca/en/story/1014117/minister-of-health-offers-condolences-on-passing-of-john-plater.
The most touching this I have heard since his death is this interview on CBC with his wife Karen.
You can listen to it here http://www.cbc.ca/metromorning/episodes/2012/08/01/john-plater-remembered/.
I only knew John for a short time but the work that he did will affect me and other Hemophiliacs for the rest of our lives.
I am forever grateful to him and I am deeply saddened to think he is no longer with us. I will be saying prayers for his family and I will never forget him as long as I live.

Cleanliness is next to godliness

So, since my wedding is just around the corner (only 358 days, 21 hours and 52 minutes away) I've decided to some personal work on myself over the next year. When I get married I want to be the best version of myself and of course a good wife so there a few areas I need work on. For example, I would like to keep a cleaner tidier house, lose weight and get in better shape to name a few.
Anyone who knows me, knows I am one of the messiest people in the world, as a child my room was always a mess, in grade school I had the messiest desk in the class and as a teenager my room could be used a science experiment because of all the crazy things going on down there. Anyways since Zane and I have got together it has become apparent that both of us are pretty messy. In order to clean my act up I've turned to a blog I found http://www.organizingmadefun.blogspot.ca/ on Pinterest http://pinterest.com/. The blog describes how to keep a clean house with just 20 minutes a day which is about 5 songs so today I started in the bathroom and 5 songs later voila, a nice tidy bathroom. Now if I can just keep it up 5 days a week I should be good to go. It may seem like common sense to most people but for some reason cleaning never made sense to me. I would like to blame it on my mother because she is notorious for hating cleaning and having a cleaning lady but alas I only have myself to blame for being a few stacks of clothes away from being on an episode of hoarders. Somethings come more naturally to me like cooking, I'm a pretty good cook without having to do much work or even use recipes. I like to think I'm pretty good at doing hair and make up too, but I must of missed the class on cleaning. The goal of my self improvements is ultimately to avoid getting sick. It seems like stress is my biggest trigger for hospital trips so I figure if I take a few steps to to lessen my stress and strengthen my body I will be in much better shape for my wedding and I will be able to dance until 2:30 in the morning without too much trouble!
Wish me luck!

Home again home again

So, I am back to Calgary safe and sound after a month in my glorious hometown of Stephenville, Newfoundland. I spent the beginning of my trip at the funeral home, the church and the graveyard to say goodbye to my wonderful Grandfather John. It was a hard time for all of my family but I have to say it was nice having us all together again. My two sisters flew out and my nephew. We spent lots of time together chatting and laughing and it was so nice having everyone around. The rest of my trip was spent at my best friends wedding. It was so nice to see my friend so happy. She looked absolutely beautiful and everything went smoothly. Stephanie and I have been friends since grade 9, we went to High School, College and University together. She has been there for me threw thick and thin and I was so honored to be a part of her wedding. However, I realized that being a bridesmaid can be challenging for a Hemophiliac. The night of the rehearsal I got a urinary tract infection and I danced so much at the wedding that I could barely walk the next day. The morning of the wedding the bride gave each of us a necklace and earrings to wear, everyones earrings were lever backs and mine just hooks, I didn't know why mine were different until I looked in the box to see that she had included clip on earring extensions for me so I could wear them.
You see that's the thing about family and best friends, they don't care about what you can't do, they love you for who you are. Now I am back in Calgary safe and sound and I think I have enough happy memories to last me until I return next year!

Pushthrough

So, this morning I got some terrible news. My grandfather, John Edward Clarence Priddle passed away this morning at 89 years old. In the past two years death has been more of a part of my life than ever before and some I'm noticing some patterns. First of all when someone dies people often ask how old they were and don't get me wrong, I don't mind at all but it almost feels like because they are old, it's not as bad or something like that. But, as I've mentioned before, when you love someone, no matter how old they get, you never want to let them go.
My Poppy was born in a small community called Pushthrough and the more I think about it the more I realize that that word is very fitting for the way my poppy lived his life. He pushed through all the hard times and didn't really let it bother him. Years ago he had a triple by pass and then about 17 years ago I guess now he was diagnosed with Parkinson's disease. I was in high school when it happened and I remember googling it and having people say that he would die of old age before he would die of Parkinson's disease. Once I moved away from my home town I only got to see Poppy once a year. Each year I would notice his hands shank more and more and it would concern me, but it never seemed to concern pop. He continued to paint and cook and live life like he always did. Perhaps that's where I got some of my strength to live with my Hemophilia.
When I was about 6 years old my parents got divorced and so me my mom and my sister sought refuge at Nan and Pops house, while living with poppy he turned into my second Dad, he taught me how to cook and bake and even left me loose in his art room where together we painted my favorite picture of all time, a vase with flowers.
One of my fondest memories with poppy is when I was about 8 or 9 years old and I was hospitalized for a few days for a bleed somewhere. Nanny and Poppy came to visit me and I cried because I missed seeing their dog Puppy. Seeing me in pain my poppy drove the dog up to the hospital and lifted the dog up to the window of my hospital room so I could reach out and pet the puppy. I still remember my hospital coat blowing in the wind and poppy with a big smile on his face holding the dog up over his head.
I could go on and on all day about all the wonderful things my poppy did for me, all the delicious cakes he baked me all the things he showed me about art and photography and his overall kindness and love for his family and friends. To think that it all ended today kills me. It makes me sick to think about. But I know it is not over, I know that poppy lives on in all 5 of his wonderful children his 13 grandchildren and 6 great grandchildren. I know that every time I cook something or look at a beautiful piece of art I will think of the kind and gentle person my poppy was and how blessed I was to have him in my life for 29 years.
He was also born on March 3 one day and 60 years before me. Because of this I always remembered his birthday and we always had a special connection, we actually spent several birthdays together. He would make me birthday cakes when I was younger and as he got older I would make him birthday cakes.
I am heading home to Newfoundland on Tuesday to pay my respects to this wonderful man. It won't be easy but I like to picture him up in heaven having a chat with my grandad and Charlie.

Treatment Options

So, I recently had an appointment with my Hemophilia Clinic Staff to discuss the possibility of me switching to OCTAPLAS. Octaplas is produced by Octapharma. It is a pooled plasma blood product that was been detergent treated to reduce the risk of blood borne pathogens. On the plus side it is a little less volume than plasma (not much though), it has a less chance of giving me a reaction and less chance of containing diseases. On the down side it is from about 1,000 different donors per unit, which exposes me to more people. It also has never been used on anyone in Canada that I know of so that scares me somewhat as well. It can cause citrate toxicity but that can be remedied by giving calcium gluconate which means I have to get two IVs during my transfusion and I feel that one is bad enough. Octaplas is detergent treated which means it will get rid of enveloped viruses such as HIV but will not get rid of non-enveloped virus' such as Parvovirus.
I have a few pages of information on it and I've talked to my doctors about it and overall I am not thrilled about this new option.
At the moment it doesn't seem to have many pros over Fresh Frozen Plasma and the fact that I have never had it before scares me.
The risk of getting HIV in Canada from a blood transfusion is 1 in 4.7 Million.
(http://www.cadth.ca/media/pdf/Economic_Analysis_March%202011.pdf). However, I think I will always be a bit nervous unless someone can say something it is 100% safe. But as we know, nothing is 100%. Every day activities like driving are more likely to be a problem for me than HIV or other things like heart disease, cancer, stroke.
The life expectancy for Hemophilia is great and I don't even know if dying is what I am afraid of, all I know is this is a very stressful subject for me.
I remember visiting a friend in Nova Scotia and having to go to the hospital there, I was seen by a young female doctor and after reading my chart for a few seconds she scrunched up her face, looked up from the chart with disgust and said "do you have AIDS?."
I've never had someone look at me like that before I felt worthless and I never want to feel like that again.
When I am faced with making big dicisions like this I always consult the other factor 5's that I know, which is only like 5 people but still it's comforting.
My Doctor told me that she is knows of all the cases of factor 5 in Canada which is 8. The problem with having such a rare disease is there is not a lot of information, not a lot of support and not a lot of treatment options available.
Some other things we discussed is the possibility of using DDAVP and Novo 7. I am very excited about the prospect of trying Novo 7 as it is completely synthetic and is a concentrate which means I could infuse myself in my own home.
Novo 7 could completely change my life but there is not a lot of research on it for use in Factor 5 so my clinic is not comfortable with trying it on me at the moment.
At the end of the day I have to choose a product or possibly bleed to death so not a whole lot of choice in reality. However I am grateful that I live in a country where I do have access to treatment.