It's Christmas time in the city

So, it's almost Christmas time again. My favorite time of year. With that being said, I can't help but feel a little bit guilty every year because of all the wonderful things we have while and some people have nothing. Every day when I get home from work there is a parcel or card or gift of some sort waiting for me. It's getting to the point where you can hardly see our Christmas tree!
Not only do I think of the less fortunate but I also think of those who can't afford treatment for their Hemophilia. It breaks my heart to know that there are people out there with bleeds and have no treatment or hope in sight.
This is a great organization that is dedicated to providing Hemophilia care for people who can't afford it. Please take a minute and check out http://www.saveonelife.net/. Save one life does exactly that, it saves a person from the pain and suffering of bleeding disorders. I hope everyone has a safe and happy Christmas season!
 

Centre for Blood Research

So, I was recently asked to write a little bit about myself for the centre for blood reasearch. Please check out their website here! http://cbr.ubc.ca/.

So this is what I came up with. If you have a minute please read.


My name is Ryanne Radford. I am a female sever factor 5 hemophiliac with less than 1% factor five level. I was born and raised in a small town in Newfoundland and Labrador with a population of about 10,000 people. It was there that I diagnosed with Hemophilia at seven months old. My diagnosis came about after I hit my head and developed a large hematoma on my head. It took a while for me to be diagnosed because I have no family history or Hemophilia. My mom and Dad are healthy and I have two healthy older sisters and lots of healthy cousins.

When I first started showing signs and symptoms of Hemophilia the doctors suggested that I was perhaps playing too rough. My mother says that she knew that wasn't the case and my Aunt had suggested Hemophilia but was told that that was nearly impossible. After 9 months of my parents travelling back and forth from our home town to the hospital about an hour away I was finally diagnosed with hemophilia.

In larger cities Hemophilia is not that rare but in my little home town it seemed very suspicious to have a baby covered n bruises and bleeding from the nose and mouth. I know the hospital contacted social services several times to investigate my family. When I heard about this at first it was very upsetting but I know the epople at the hospital were just doing their jobs.

My family doesn't often talk about how hard this was on them. They always act like it was no big deal but every now and then they will mention bits and pieces of what was going on in their minds and I know it was a nightmare for them. My older sister says that she always felt like a terrible big sister because there was nothing she could do to help me. My mom said she found it hard to see me hooked up to so many machines and IV poles. My father said that he was once told that I wouldn't live to be past 18 years of age. I also remember them saying it was very difficult to find a baby sitter for me because no one wanted to babysit a child who could get hurt so easily.

In the early days they didn't have the stylish helmets for Hemophiliacs like they do today so the physiotherapy department at the hospital did their best to create a protective helmet for me made out of stripes of material. I wore my helmet around the house but my mother didn't want me to be treated differently so I didn't wear it out in public very much.

When it came time to go to school I was very lucky, I was never treated any differently and my teachers seemed to be aware but never afraid. I think that was because of my parents they treated me just like any other child and everyone else seemed to follow suit.

Growing up I would be treated with four units of Fresh Frozen Plasma every time I fell off my bike, lots a tooth or twisted my ankle. The most traumatic experience I have had to date was when i was When I was twelve years old I started my period and began having lots of problems, it would not stop and I began loosing lots of blood. I began getting treated with 4 units of Fresh Frozen Plasma once a month which worked for a while until I developed ovarian cysts which ruptured and bled into my abdomen. This was a major bleed and I spent almost a whole year in the Janeway Children’s Hospital in St. John’s, NL. I was treated with more than 100 units of fresh frozen plasma. The doctors contemplated a hysterectomy but felt it was too aggressive. They tried several which imitated menopause and caused me to have some very interesting symptoms but I was still having some bleeding so I eventually tried the birth control pill which seem to work perfectly. My other major bleeds have been into my iliosopas muscle. I have bled into this muscle several times and each time it seems to quite a large bleed. My most recent ordeal was in December of 2009 I was admitted into the Foothills Hospital in Calgary for an iliosopsas bleed. I was told that the bleed was quite large and was on bed rest for an entire month. Needless to say it was the worst Christmas ever! But I did get lots of presents whether or not that was because I was in the hospital we will never know!

As I get older I really worry about employment. No one wants an employee who is out sick all the time and with no warning. This has been a source of pain for me for sure as I have been fired, laid off and threatened in the work place because of my Hemophilia and the frequent sick days that I sometimes have to take. Right now I am working full time and I have hope that this will be a good experience for me.

My Hemophilia has affected every aspect of my life including, what I studied in school, where I live and my hobbies and interests. Right now I am completely wrapped up in wedding planning. Our wedding will take place on July 20, 2013 i our home town of Stephenville, Newfoundland. We are having a big church wedding with about 200 guests so you can see why I've been taking so much time in planning.

Hemophilia has been a big concern of mine when it comes to wedding planning because I worry I might get a bleed and not be able to fly to Newfoundland or I will get a bleed before the wedding and be in pain on my special day. In this case I just have to pray for the best and try not to worry about it too much and jut take each day as it comes.

The best treatment for the last 28 years has been Fresh Frozen Plasma. I will be treated with varrying amounts depending on the location and severity of the bleed. For example a simple elbow bleed might need only 4 units whereas the larger bleeds I've had required nearly 100 units. My doctor and I have recently discussed the use of Octaplas a product produced my octapharma. We have decided to go with this product as it is detergent treated and has less risk of blood borne pathogens. I have not tried this product yet and am nervous to try it.

Living with a chronic illness isn't easy. I find support in a lot of ways. I am blessed with a wonderful fiance and a large circle of friends and family. I also attend church and do a lot of volunteer work. Currently I am the Co President of the National Youth Committee of the Canadian Hemophilia Society. In am also the past president of the Calgary chapter of the canadian Hemophilia Society. I find it helpful to tell my story. I started a blog about 3 years ago dedicated to raising awareness for women with bleeding disorders called Hemophilia is for girls. I have about 105 followers and have been featured in three American publications. My blog is most popular in Canada, USA and India. Social media is a great tool and I use it on a daily basis to connect with other hemophiliacs from around the world.

I feel that it is so important to have students educated in the field of Hemophilia and bleeding disorders. Patients with this condition often need prompt care and very much need a doctor who will listen to them.

I speak every year to the first year medical students at the University of Calgary and I am always happy to do it as simply being educated can make such a huge difference in the way people with bleeding disorders are treated.

Although there is no cure for Hemophilia at the moment I feel that having resources, support and education can certainly lessen the negative effects a bleeding disorder has on someone. As for me, I feel I am doing my part by documenting my life, the good the bad and the ugly, that way maybe some other person down the road might be able to read it and get some help from it or at least it will put a smile on their face.

My Morna

So, one of my favorite nurses of all time is retiring and so I took a few minutes to write about her. Anyone who has had a great Hemophilia nurse will know what I mean!

My Morna

I had the pleasure of meeting Morna about 5 years ago when I first moved to Calgary. in the short amount of time this tiny woman has made a huge impact in my life.

Morna is the one of the nicest nurses I have had in my whole life. She is kind, caring, knowledgeable and most of all she does what is best for her patients.

She is not only a nurse to the patients she sees on a daily basis but an advocate to patients with bleeding disorders all over the world.

My favorite part about Morna is that her nursing doesn't  stop at the end of her shift she can always be seen with a big smile on her face at all the Hemophilia Society events.  She's even gone as far as to make special quilts for patients when they aren't well.

After meeting Morna and seeing how great she treated me in the hospital my father and fiancee felt a lot better about me being at the clinic.

Morna has always encouraged me to do my best and to work hard. She is the one who got me involved in the Hemophilia society in the first place and now it is five years later and she still inspiring me to try and help those dealing with bleeding disorders.

As I said before Morna is always pleasant and happy but I have never seen her as happy as when she is with her granddaughter and I am so happy that she will be spending lots of time with her. Anyone who gets to be around Morna is certainly blessed.

I know I feel that way whenever I am around her.

I will never forget the kindness she has sown me as long as I live and I pray that all Hemophiliacs have a chance to have someone like her as their nurse.

 

Treatment For All

So, I read a very sad story this morning on a friend of mines facebook page. A young man, suffering from Hemophilia passed away on September 20.
He died because he could not afford treatment for a bleed. He died because of money. The thought of this breaks my heart.
If it had been a freak accident or something it would still be very sad but the fact that it was over money is disturbing.
This young Hemophiliac was studying to be a doctor because he wanted to make life better for others.
I've had severe bleeds in my life and the pain was unbearable. The pain he must of went through leading up to his death must of been one hundred times worse than anything I've had to go through.
He must of suffered a long slow and agonizing death. Treatment for Hemophilia is very expensive. Factor concentrates are very affective but can cost up to 10,000 for a single bleed.
I know that we are working on Treatment for All but when you read stories like this, it's obviously not fast enough.

Please read the rest of this story at http://www.mid-day.com/news/2012/oct/231012-mumbai-HC-order-comes-a-month-late-for-student-with-haemophilia.htm

Wedding Woes

So, I am suppose to be just getting back from a wonderful trip to Newfoundland. But alas, I am just coming off bed rest. The day we were suppose to leave I ended up being in so much pain I could hardly walk. Zane left for his trip and Monday I went to the hospital for a blood transfusion followed by 4 days of bed rest.
It turns out I had a ruptured ovarian cyst and that was the cause of all the pain.
I was really disappointed and really sad. Being home alone was a bit depressing but I was blessed enough to have a few friends and family come and visit and that made it bearable.
Zane had a wonderful trip to Newfoundland. He was there for his friends and said the wedding went off perfectly.
This is not the first time I've had to cancel a trip and I'm sure it will not be the last. It's actually not even the first time I had to miss a wedding.
In the end, the main thing is everyone had a great time at the wedding and I am on the road to recovery.

 

Time Bomb

So, lately I've been having a few aches and pains. It finally came to ahead Sunday night when I woke up at 3 in the morning in unbearable pain. A hot bath and a few percocets later Zane dragged me into the Clinic. An Ultrasound revealed I have an ovarian cyst. The problem with this is that it will either grow and rupture which means a few transfusions, a hospital stay and lots of pain, or, it could shrink and I'll never have to deal with it again.

The tricky part is I am suppose to be leaving for Newfoundland on October 1st. The action plan is I will getting an ultrasound on September 27th so by then if the cyst has grown I will be advised to cancel my trip and if it shrinks I will be on my marry way.

Either way it is very frustrating! I've been looking forward to this trip ever since I left Newfoundland back in July. I'm also upset because I feel like a ticking time bomb. When this cyst does rupture I know I am in for a lot of pain. The last time it happened it took 16 units of blood and lots of morphine before I felt better and I just don't feel like going through that again.

In the meantime I've been googling a few things I can do to get rid of cysts naturally. These things include, no caffeine, no sugar and no carbohydrates some of my favorite things.

At the end of the day Zane and I are happy and mostly healthy so that's blessing enough!

Youth Conference

So, I spent the weekend in Toronto for the Canadian Hemophilia Society National Youth Committee retreat.

The weekend was all about advocacy. We had 25 participants and everyone was friendly, kind and seemed very interested in getting involved. 

One of the first presenters was David Page, the fearless leader of the CHS. He told us about WHY we are involved, WHY are we doing this. His presentation was great, perhaps my favorite of the weekend. What I took away from it is that we need to stay involved to ensure we have a safe blood supply, access to said blood supply and that our clinics are running as they should be. 

A huge part of these conferences are what happens after the presentations. Eating supper together and hanging out gives us a chance to talk about our own experiences.

I love spending time with the Youth Committee its the only place where you can discuss which pain killers you like best, talk about all the different hematologists and argue about who has the biggest chart. It's so different being around people who are just like me. Well almost just like me, the boys gave me a demonstration of how they infuse their product. I was so impressed and so jealous. It took them about 5 minutes to give themselves an IV an infuse. The product they use is recombinant so it contains so human blood product and it is a concentrate so its a small little vile. Within minutes they bring their levels up to normal and are on their way again. I asked them how it felt and they said they felt no different. 

I am so jealous because for me to do that takes a trip to the HTC, an exam from a Hematologist, often times diagnostic imaging, starting an IV, Benedryl, and 4 units of Fresh Frozen Plasma which takes at least 4 hours at the best of times. 

I feel like my life would be completely different if I had a product.

At these conferences we also talk a lot about research and advancements in the treatment of Hemophilia and this is another area that makes me jealous because while other factor treatments are moving forward there hasn't been any progress with the treatment of Factor Five since it was first diagnosed in 1944!

Octaplas or Octaplasma is a new treatment I am hoping will be effective for me but it is still old fashioned compared to the some of the other treatments. 

Overall, I had a wonderful weekend, I laughed and enjoyed every minute of it! The goal of the Hemophilia society is to ease the pain and suffering of those living with bleeding disorders and this weekend certainly made me forget about Hemophilia. 

Toronto Bound!

So, tomorrow I head about to Toronto for a conference on Advocacy. This is put on by the Canadian Hemophilia Society and the National Youth Committee, so as the co president of the committee I will be helping out and speaking.
This year we will be discussing Advocacy. I am really looking forward to it. I think it's important for youth to learn about how to advocate for themselves and a great introduction into the Canadian Hemophilia Society which I also think is really important.
I must say I really enjoy the conferences once I get there but in the time leading up to it I do stress a lot about if I will get sick or not before I go or if I will get sick while I'm there. I stress and stress about it to the point where its not always enjoyable for me to go. I know when I get there and see all my friends I'll be fine.
I will be sure to follow up with how the conference went!
Pray I have a healthy trip!

 

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.

And the band played on

So, I am currently watching a movie called And The Band Played On. It is a movie about the AIDS epidemic. I hate watching or reading things about this time in history nothing hurts me and disturbs me more. I subject myself to this because I feel it is important for me to learn about this time in history. I feel that everyone needs to be aware of what some people had to Go through to ensure we have a safe blood supply system. The movie has a famous line, "how many dead Hemophiliacs do yiu want," this refers to the fact that when it was first discovered that the AIDS virus was be transmitted through the blood supply people fought the idea of pulling the contaminated blood because of the cost. Greed, Ego and Ignorance lead to the spread of AIDS as far as I can tell. How something like that can happen is beyond me but I think it's important that we remember those who suffered and remember that we need to Keep blood system safe for everyone not just Hemophiliacs but anyone who may require a blood transfusion. The key to this is to never let money come before health.

Grandad

So, this morning I got the terrible news that my grandad father Radford passed away in his sleep At the age of 92. I had the good fortune in Life to grow up around both sets of grandparents and over the years they have become as close to me as parents. When you are a child your grandparents are old, they just always seemed old and you knew that about them right off the batt and that's how it was. I never imagined that they would someday grow even older and pass away. I know at 92 death is somewhat close but as a family member it's still hard to accept when you love someone they could grow to be 212 and you still would be sad to see them Go. Today is also World Hemiphilia Day. I didn't really feel Up to celebrating this year but I was thinking of all of my Hemophiliac friends today. I was also thinking about how Hemophilia affected my relationship with my Grandparents. You see my sister is 8 years older than me and she spent every weekend visiting my grandparents. When I was born I had A LOT of complications and I was in and out of the hospital all the time. My grandparents on my fathers side were nervous to have me over and weren't 100% sure how to care for me. I know they loved me a lot but they just didn't have enough Information so I misses out on sleepovers and getting to spend as much time with them as my sister did. Now that my grandfather has passed away Hemophilia is getting in the way again. The funeral is on Saturday and at the moment I am suffering from a kidney infection. Ive had blood work and an ultrasound and everything comes back Normal except this infection that I've had for more than two weeks now. I'm nervous to travel when I am Not feeling 100% but I also want to be with my family during this difficult time. Whichever way I look at it, it's difficult but I hate how Hemophilia is dictating my life. But this is not about me it's about my Grandad he was a wonderful man who made me laugh and he lived a long happy life and had lots of family and friends who Loved him!

Ears Pierced!

So, on Sunday I started getting a really bad pain in my lower back on the right hand side AND pain in my left quad muscle.
I went to the Hemophilia clinic on Monday morning. I was given four units of fresh frozen plasma for the leg bleed and antibiotics and pain meds for the urinary tract infection.
An ultrasound showed that everything look normal and there is no obvious reason why I keep getting these infections.
I am set to see a urologist on May 2 to see if they can figure it out.
It took 12 hours on Monday to get all the testing done and my treatment and I must say I still feel pretty tired from the whole ordeal.

I have a few small bruises from the ultrasound and a bit of a headache and of course all kinds of that tape glue stuff that gets stuck to you from the IV that is IMPOSSIBLE to get off.
My leg is feeling a lot better now Thank God and I'm drinking lots of water and cranberry juice to try and fight off the infection.
One positive thing that came out of all of this is I got my ears pierced! I've always wanted to get my ears pierced and I was always told not to because of the risk of bleeding and infection.
Since I had a blood transfusion I though it would be a good time to do it within the 24 hour time period before the plasma 'wears off' I am also on antibiotics so I most likely won't get an infection.
Zane took me to the mall to get it done and I must say I was so nervous, not because of the pain but because of the healing process afterwards. However I am happy to report everything went fine. There was no bleeding, bruising or swelling what so ever and it didn't hurt at all. Getting an IV is much more painful than a piercing.
I just had myself so convinced that something terrible was going to happen. I think I do that a lot. Sometimes when you are use to things going wrong you just assume they will always go wrong and it's a healthy fear to some extent but I think sometimes I go overboard and limit myself for no reason.
In any case I am very happy with my little earrings. I highly doubt I will be getting anymore piercings or anything like that but I am going to try and be a little bit more adventurous.

March sadness

So, I went for a follow up appointment today to look into these constant infections I've been having.
I am going to be referred to a urologist and have some further testing done. I'm really not looking forward to that because it seems scary to me but on the other hand I am getting sick of always being on antibiotics and missing work.
Hopefully this illness is behind me at least for a couple of months. At the moment Zane is still off sick with his knee injury and he has the flu so it's rough going around our house for a couple of days.
In the meantime I am drinking lots of water and cranberry juice.

Better days ahead... I hope!

So, I spent all day Friday in the hospital getting a blood transfusion. I received 4 units of fresh frozen plasma for a severe kidney bleed. Half way through my transfusion I got really sick and broke out in hives so I was treated with benedryl. After 9 hours in the hospital I came home and noticed I had broken out in hives again so I took some more benedryl and spent the rest of the night in an out of sleep.
I am still taking antibiotics but I am still in a bit of pain in my lower back and I feel really tired.
Also, I am a little bit upset about St. Patrick's Day as Zane and I had planned to have our friends over for a little get together. There's nothing I can do about it of course but I am a bit disappointed.
I've noticed that I have been in the hospital every since month for a transfusion since November. I am really not 100% sure what i going on as I normally don't go in that often. I was hoping that by working part time and eating healthy and exercising I would start to feel better but alas that is not the case at all.
Part of me thinks it could be the winter. The winter months are always harder on me than any other time of year.
Whatever it is I hope it ends soon because its interferring with my work, my social life and my over all mental health and quality of life.

March Madness

So, a few days ago I started having pains in my lower back area and I assumed it was from the gym as I have been working out a lot more lately.
Last night I noticed trace amounts of blood in my urine so I went to the doctor yesterday to get so testing done and it turns out I have yet another urinary tract infection. I started taking antibiotics yesterday and I've noticed this morning that the trace amounts of blood have turned into much more noticeable amounts so I am heading into the clinic as soon as it opens at 8:30 am and I am assuming they will give me plasma. It is
Very fustrating to me how a simple urinary tract infection can turn into such an ordeal.

Snow Day

So, today we had a snow day. The roads were bad and we got a lot of snow in a short amount of time so Zane and I decided to spend the day resting and relaxing. I also took the time to do a lot Hemophilia Society work, I blogged, spoke to national twice, completed an agenda for our Volunteer Appreciation night on Friday, wrote out Thank you notes to our board members and corresponded to e mails. Because I am involved in so many committees a little bit of work for each committee turns into a lot. With that being said it can be a lot of fun too. We are having our Volunteer Appreciation Event on Friday which is always really nice, wine and cheese and mingling.
I also spent the day making some healthy food for the week. I am trying to lose 2 pounds a week for the next 4 months.
We shall see how it goes but I am praying for good results I am counting calories and working out 4 days week.
Only time will tell.
In other news my arm is sore and I am praying its just muscle pain from the gym and not ANOTHER bleed.

Birthday

So, today is my 29th Birthday. Birthdays are always a hard for me because I'm never around all of my family. Also, when I was a child my mom use to throw me the most elaborate birthdays so as an adult its hard to live up to all those amazing parties.
Another thing that comes up for me on my birthday is my illness sometimes I look back on the past year and how many bleeds I've had and I wonder and worry about how many I'll have this year. Don't get me wrong, getting all kinds of nice gifts and getting to eat cake really helps but it's always there in the back of my mind.

Rare Disease Day

So, February 29th, 2012 marked Rare Disease Day. A rare disease is considered to be one that affects less than 1 in 20,000 people. Factor 5 Hemophilia, the wonderful rare disease I have, has only 150 cases reported worldwide thus making it in my opinion very very very rare.
Being "rare" or having something rare about you had a magical appeal to me when I was a kid. I thought it was cool or special to have something that nobody else has. However after years of blood transfusions, pain, anger and confusion Hemophilia Factor 5 is no longer magical to me but a torture and a source of great pain for me.
With that being said I have a wonderful fiance Zane. I don't know if I mention that enough in my blog but he amazing and he decided that we should celebrate rare disease day so instead of being sad about having this condition I got to celerate by going out to our favorite restaurant together and doing a little bit of shopping at the mall.
Anyone who suffers from a rare disease or any disease for that matter has without a doubt a ton of obstacles in front of them and reasons to be upset with their lot in life but today I am happy to say I can see the positive and I feel very blessed.

Au revoir Paris

So, I finally let my fear take control of me and I decided to cancel Paris. I recently went to a conference in Montreal and between the flights and long days and travelling around with my luggage I got a bleed so that made me think that Paris was going to be much too hard on me.

The flight time is 22 hours and the conference would of been 4 days. Some people I've talked to agree with me some people think I'm crazy.

I think I am being very smart and responsible. You see when you have an illness like this well at least in my experience I've learned to not get too excited about things. It may seem sad in a way but it's all about self preservation. I've made plans for lots of things that I've had to give up on, careers, parties, my own sisters wedding.

As a child I would scream and cry until my face turned blue when my friends would go skating and I couldn't go but as an adult I've learned to accept it and move on.

Normally, I don't get too excited about things that's the trick. But this time, I did get myself excited about Paris, I didn't realize it until it was cancelled but I have a little Eiffel tower statue, a bag and several t shirts all purchased with the anticipation that I would be there some day.

I have the worst sinking feeling every time the word Paris is mentioned, part resentment, part acceptance, part sadness.

There will be lots of trips in my future or not, either way I'll curl up with Zane and Lily and be fine.

Hemophilia is a pain in the butt...literally!

So, I spent Friday in the hospital I went to the Hemophilia Clinic in lots of pain, my right leg felt sore from my gluteal muscles to my knee I think it was from overuse when I went to Montreal but either way I ended up in the hospital. After two tried for an IV I received 50 mg of Benedryl, two units of frozen plasma, percocet, more benedryl and then two more units of frozen plasma. The whole process took about 8 hours, its very tiring but my Dad came up with so that was really nice and made it a lot easier. 

My plans for the rest of the weekend is to rest and ice my leg. Luckily (unluckily) Zane has a bad knee as well so both resting up together. 

Anyways, this bleed has got me thinking about what people think about Hemophilia. In my opinion people are very ignorant about my Hemophilia and people with disabilities from the kids who use to make fun of me as a kid because my lip was always bleeding to the adults who think I'm faking it. The thing about me is that I can be having a bleed and still look perfectly normal. I can put make-up on and do my hair and look just like I do any other day except inside I am actually in a lot of pain. In fact living with Hemophilia I am often in a lot of pain on the inside but I've learned to deal with some of it and hide some of it. 

Tickets for sale!

So, I would like to tell you about this beautiful necklace we are selling tickets on.

The pendant and necklace was donated by Alberta Diamond Exchange a beautiful jewelry store located in Aspen Landing, Calgary, specializing in custom made jewelry for more information check them out at www.abdiamond.ca.

The pendant is 14kt white gold and set with 44 round brilliant cut diamonds and one pear shaped genuine Mozambique garnet.

This piece was custom made specifically for the Southern Alberta Region of the Canadian Hemophilia Society. Tickets are 5$ each with 100% of the proceeds going to the Canadian Hemophilia Society. The winner will be picked on March 9th, 2012 at the 3rd annual Volunteer Appreciation Event.

If you are interested in purchasing a ticket please let me know. 

Thank you to Alberta Diamond for their extremely generous donation.

Hurt

So, I think my news years resolution should of been to blog more because I haven't written in a long time.

Tonight I am writing about a sore leg. But of course, as a Hemophiliac a sore leg is never just a sore leg. It started to get sore around Sunday and its still really sore today so I went in to get it checked out at the clinic. They said they think it's just a muscle strain so I'm going to rest it for a few days and see how it goes. I'm praying it will get better on it's own and that I don't need a transfusion. Anyways this whole ordeal brings me to my point, you have to be so careful with prescription medication. Because of the pain I took a pain killer but I only took the prescribed amount and no matter how bad the pain gets you can't mix medications or drink alcohol with prescription medication. 

I know what it is like to be in extreme pain I really do I've bled into almost every joint and I think I have a high tolerance for pain. Proof of my pain tolerance is the fact that I was having a gallstone attack and I worked my entire shift at work and then went into the hospital. 

But if you are in that much pain you need to go into the hospital where they can give you the most pain medication possible and keep an eye on you so you don't harm yourself. 

Honestly, I find most pain medication doesn't help the pain a whole lot, it takes the edge off but that's about it. If you are in enough pain that you feel like taking prescription drugs go to the hospital and ask for help to get to the source of the pain that is your best bet. Taking excessive amounts of prescription drugs can only lead to stomach problems, addiction and even death. 

In the New Year

So, as you know I've been having some problems with recurrent infections. I went back to my family doctor and went on another round of antibiotics. I must say I am feeling a lot better now I have to get an ultrasound tomorrow which is never fun but I guess it is better safe than sorry. Aside from a small bump in the road I have been trying to follow my new years resolution which is to do more stuff and to loose weight. So, with regard to doing more stuff I've been going out more and saying yes to more invitations than I normally do. With regard to weight loss I've taken a part time job at Curves and have been working out 4 times a week! Of course both of these resolutions will take time but so far I feel like I'm on the right track!

Might as well start things off with a bang

So, recently I was having back pain I thought it was from the gym but a visit to the Hemophilia Clinic revealed I have both a kidney infection and perhaps a knee bleed. I'm on antibiotics and received 4 units of Fresh Frozen Plasma. Blood work showed that all of my levels are good and I had an ultrasound showed everything is normal. I had an allergic reaction to the plasma and had to have benedryl which is never fun because the hives are so itchy and the benedryl really knocks me out. Anyways, the good part of the day was that my Dad came up to visit me. I was transferred over to the ward and Dad and looked at pictures on his laptop. Looking at the pictures made me feel like a person, like someone who travelled, who had good times and has people who love  them and reminded me that I have a wonderful full life and I am not just some diseased thing sitting in a bed with cords and drugs being pumped into me. 

While I was in the hospital I spent an hour with two other roomates one older man with cancer and another older lady also with cancer. 

It reminded me of the last time I was in the hospital in August, in the exact same room in the exact same bed unfortunately my roomate at that time has since passed away. She was a wonderful roomate, so warm and friendly.

It brings me back to my notion that I am very lucky to be here, we are all very lucky to be alive and while I am here I want to do the best I can with the short time we have! I don't know what that is yet but I'm working on it! 

Inspired 2012

So, tomorrow it's back to work for me! I can't believe it really. Christmas vacation went so fast I wish it could just go on forever.

Anyways, with the new year I have been thinking about things I can do in my every day life to make myself happy. So far I am looking forward to my trip to Paris and my trip to Newfoundland. I am also looking forward to planning my wedding which is set for 2013.

A lot of times in our lives we do what we have to do, we work day in and day out at jobs we don't like and we just get through things one day at a time. I am proud to say that three people that I grew up with in my home town of Stephenville, Newfoundland took the time to figure out what they really want to do in their lives and have started a snowboarding company. Their passion for all things snowboarding really shows and if you are into snowboarding I strongly recommend that you check out their site maginesnowboards.com.

Happy New Year!

So, last night we rang in the new year with good food and good friends! Since it's the new year I thought it would be a good idea to take a moment and look back at the year we've had. First of all we celebrated New Years 2011 in Newfoundland which in my opinion you can't ask for any better than that! February was a bad month in that I ended up in the hospital for a few nights with a leg bleed, then in March Zane tore his calf muscle and was off work for three months. I started working full time in March so that was good Zane also became a Journeyman Electrician in 2011. In August I had a ruptured ovarian cyst and ended up in the hospital for a few days and in November I had one of the hardest things I ever had to deal with my in my life. I missed my darling sisters wedding because of my health. I was never so disappointed and hurt in all of my life. December was also a very hard month in that I had to work 12 days straight leading up to Christmas and I found it very stressful However, after work finished up for the year things got a lot better we have a beautiful Christmas with our families and rang in the new year in good health so although we have had lots of ups and downs I have hope that 2012 will be a great year. I'm looking forward to good health, to going to Paris in July and to going to Newfoundland for my wonderful friend Stephanie's wedding! I am also praying that all my friends and family have a healthy year!