New Year, New Fear

So, as a severe factor 5 hemophiliac I rely heavily on the blood system to keep me alive. There are no other treatments available for factor 5 so I receive Octaplasma, which is a detergent treated plasma and fresh frozen plasma.
If you get a chance read this article,
http://www.iflscience.com/health-and-medicine/new-human-virus-linked-hepatitis-c

I am not 100% sure what it i all about but it was posted by a member of the Hemophilia community.
Basically the article is talking about a new virus they discovered in human blood.
They are not sure if the virus causes disease or not but it is very scary to me.
Just the thought of something potentially being in the blood system scare me and should scare everyone as anyone with blood in their veins could possibly need a transfusion at some point in their lives.
I like knowing whats going on in the bleeding disorder world but without all of the information I am just finding myself a little scared.
The last time I was freaked out about the blood system was when I was in high school, I was told about how hemophiliacs contracted HIV and Hep C during the 1980's.
In response to this I refused to get a blood transfusion for a month or so. I had a bleed in my hip and left untreated the blood ate away and my muscles until I just had one little tiny skinny leg and a limp and I was in so much pain.
I was eventually sent to St. John's and treated there for a few weeks.
That was a terrible time in my life but I certainly learned my lesson. Not being treated is not an option.
Anyways, just thought I would share this article would love to get your thoughts on it!

Happy New Year 2016!

So, we had a wonderful New Years Eve. We had a beautiful four course meal at the top of the Calgary tower with some great friends. 

Of course every New Year I like to reflect on the past year and all I can think of is Thank God we survived it. 

In 2015 we bought a house, moved across the city, got a new doggie, I was hospitilzed several times and we lost one of the most important people in our lives. 

Not much you can say or do when your heart breaks like that. We think about her every day. Sometimes I still think, I have to talk to Della about this. 

There is a lot of pain that I hope we leave behind in 2015 but of course I know life will have new challenges for us, I just pray we are stronger and wiser when we face them.

For all of my Hemophilia friends I hope you have less bleeds in 2016 and a healthy and happy new year. 

My goal is to stay healthier than I was last year so ive joined the gym and started a healthy eating program.

Best of luck to everyone and their resolutions!

Merry Christmas Everyone!

So, I just wanted to take a minute and say Merry Christmas to all of the wonderful people who read my blog and all of the people affected by bleeding disorders.

May you all have a happy and healthy Christmas surrounded by your loved ones.

 

The 12 blood days of Christmas

So, its been well over 12 days that Ive been having nose bleeds. They range from once to three times a day and from light bleeding to very heavy.

In an effort to stop the bleeding ive tried Cyclokapron, a humidifier and coconut oil in my nose but none of this has worked. 

I went to see my family doctor and she suggested cauterizing it but I'm really not convinced that taking a hot tool to my nose is gonna help.

I thinking the best bet will be four units of fresh frozen plasma.

I am going to my Hemophilia Clinic tomorrow for a check up so I will see what they have to say. 

I've included this awesome illustration by my daring friend, Silvana Moran to highlight how i'm feeling. 

Please visit her at behance.net/radish

Nose bleeds are awesome

So, ever since I got back from Newfoundland my nose has been bleeding on and off. Nothing serious, just a little trickle here and there. However, last night I had a full on nose bleed it woke me up out of bed and I had tissues to my nose for about an hour. I haven't really had a bad nose bleed since I was about 10 years old. Ahh nothing like the taste of blood in the back of your throat to bring back childhood memories. Anyways, Transexamic Acid or Cyclokapron is a wonderful drug, you take three pills, three times daily and it helps to stop the bleeding. (it doesn't actually stop bleeding it helps to stabilize a clot once it is formed.)

This drug works great for me it sometimes gives me a stomach ache so I sometimes cut down the dose especially if the bleeding isn't heavy. 

It is a wonderful drug but very expensive almost 1.50 per pill and when you are taking 9 pills a day for one or two weeks it can be very pricey. I am very blessed and I have a health care plan so I don't have to pay anything but there are thousands of Hemophiliacs who can't afford this potentially life saving drug. That's why every Christmas I urge everyone to donate to SAVE ONE LIFE. This organization helps Hemophiliacs who can't afford factor or blood transfusions. Hemophiliacs who do not receive adequate treatment can have life long problems or even bleed to death so please consider sponsoring a child or donating at http://saveonelife.net/.

On another note, if I have to be bleeding from somewhere I would definitely choose a nosebleed because you can easily see how much blood you are loosing and they aren't painful.

So I really can't complain. I'm gonna watch a Christmas movie and wash my Cyclokapron down with some cranberry cider!

Here is the deepest secret nobody knows

So, about a year ago now my Momma was diagnosed with Parkinsons disease.

It is a very frustrating, scary disease. 

I feel like my mother is slowly slipping away from me and there is nothing I can do about it.

I just got home from a two week visit with my Momma and it was so hard seeing her in pain and not doing all the things she would normally do.

My mom and I have faced a lot of hard things together, my bleeding disorder, my step father Charlie passing away and now her illness.

I think everyone can agree that moms cant be sick! They are the family rock, they are always there for everyone else and now that the tables are turned I feel helpless and sad. 

I want my momma to be happy and healthy and live to be 507 years old!

and maybe she will. 

Until our next visit together I am praying for her and educating myself as much as I can about Parkinsons disease.

Happy Thanksgiving!

So, today is Thanksgiving here in Canada and I have to say there are many many things I am thankful for.

First of all I am so thankful to god that I am healthy this weekend. I am also thankful for my darling husband Zane. He is so helpful and supportive I don't know what I would do without him. Last but not least I am thankful for our awesome friends and family. We spent the weekend with are friends and had a great time visiting with them. We also have an amazing family that we love very much.

Sometimes when I am sick it doesn't feel like it but I know we are very blessed. 

I hope everyone is having a great long weekend and that they are happy and healthy.

I've attached a picture of Zane and I and our two dogs Lily and Jade. Hopefully next year we will add to our family but that's a post for another time!