Reunion

So its been 10 years since I graduated high school! I can't believe it. Our graduating class is discussing getting together next year to celebrate the occasion.

I am really looking forward to it I must say. Especially since I wasn't suppose to even make it that far. I remember my father telling me about how the doctors told him that they didn't expect me to live long enough to graduate high school so it's nothing short of a miracle that I am helping to plan my 10 year reunion.

Some people say they hated high school and I understand how they feel but for the most part, I really enjoyed it. I had the normal, high school experience not knowing what to wear and all that but having Hemophilia added extra challenges.

For one, I was out sick most of grades 7 and 11. In between that I would be out for days or weeks at a time.

Grade 7 for example I nearly bled to death. My periods were out of control and I developed ovarian cysts that ruptured and bled causing me to have massive internal bleeding.

I was rushed air ambulance to the Children's Hospital where I stayed for more than 6 months.

Now I am 26 and I have no problem talking about my bleeding problem or my period, but when you are in grade 7 it's the last thing you want to talk about.

For the next 6 months I had to stay in the hospital away from all of my friends and family. I got a blood transfusion every 12 hours and countless ultrasounds, ct scans and blood work and that's not even the worst part!

While I was sick, the principal thought it would be a good idea to get all the grade 7's together and have the health nurse explain why I was in the hospital!

I was devastated. A friend of mine called me to tell me what happened and I threw up all night. I think the nurse eventually gave me a sleeping pill to calm me down.

The funny part was nobody really cared. When I got back from the hospital everyone seemed so happy to see me and didn't make fun of me or anything like that.

I still have all the cards and letters from that year. I posted them all around my hospital room and I think I had about every inch of the walls covered. The letters were sweet and funny but most of all encouraging. I couldn't believe the support, care and kindness everyone showed me and I will never forget it as long as I live.

I think having them rooting for me back home helped me get better as quickly as I did.

A reunion means a lot of things to different people but to me it's like going back to see family!

You win some, you lose some

Well I must say the last few days I have been a bit disappointed. I recently applied for the Kartik Shah Fellowship through the Canadian Hemophilia Society (CHS). The award includes airfare and accomidations to the World Conference on Hemophilia in Argentina in July.
I didn't get accepted.

I can't be upset, the people who won are wonderful, dedicated volunteers.

I did however win a contest for my blog! The contest is put on by a non profit organization called My Girls Blood check it out at www.mygirlsblood.com.

It was really encouraging for me because I have never had a blog or really even talked about my Hemophilia. It's great to know that maybe someone else out there who is struggling with chronic illness may read this and find some comfort in the fact that they aren't doing it alone.

Here comes the bridesmaid!!

The Volunteer Appreciate event was a success! Events like that are one the only perks of having severe Hemophilia.

Another perk is the wonderful people I have met while attending Hemophilia conferences.

One such friend has recently asked me to be her Bridesmaid! I am so excited about it. I never thought anyone would ever ask me to be a bridesmaid just because I get sick at the drop of a hat and thus am not very reliable. However, the bride also has a bleeding disorder, so she understands.

With the wedding in mind, I am working on losing some weight. I have 7 months so it seems doable. I think.

You see, last year I had a severe bleed in my iliopsoas muscle. I was admitted to the hospital for two months, received 50 units of blood and was on bed rest for about 5 months.

Not to mention the fact that I was on steroids as well. All of this resulted in me gaining a bunch of weight. I can’t blame it all on my Hemophilia, I mean I did drown my troubles in food and had a bit of a pity party but the main thing is I am feeling better now and looking forward to getting into better shape.

So to do this, I’ve decided to sign up to do a half marathon, walking of course.

I've never taken on anything like this before so we'll see how it goes!

Wine and Cheese and Hemophilia

Tonight is a big night! We are having a wine and cheese event at the Art Gallery of Calgary for our Volunteer Appreciation night for the Canadian Hemophilia Society- Calgary Chapter.

I am the Vice President of the Calgary board and we have spent lots of time planning for it!

Events like these are very important to me. I grew up in a town of 10,000 people. There was only one other boy in our community that I knew of that had Hemophilia. He was a lot younger than me and he was a boy, so I didn't really have a connection with him until now.

My family had no information about hemophilia and it wasn't until I was about 13 years old that I even heard of another female with Hemophilia.

Now, Hemophilia is a huge part of my life, it always was but it seems like I've only admitted to myself in the last two years or so. I get involved with the Hemophilia Society as much as I can, I am a youth representative for Alberta and I am on various other committees.

Last year at a women's conference here in Calgary I finally got to meet a lady with Factor 5 Hemophilia like me. It was such a wonderful experience to meet someone that knew EXACTLY what it was like to live with this condition. It was overwhelming and exciting all at the same time.

Tonight, I get to spend the whole evening with Hemophiliacs and talk and chat about life. I also get to drink delicious wine and desserts! Life doesn't get any better than this!

Blood. It's in you give-me!

I guess this couldn't be a blog about Hemophilia without mentioning the importance of Blood Donation.

If you do not donate blood I will die. It's as simple as that. Then you wouldn't have this blog to read! So you see it's very important.

In my life, I estimate that I have had about 2,000 blood transfusions give or take a unit or two. That's a lot of blood.

I've been getting blood transfusions since I was first diagnosed with Hemophilia in 1983 at 7 months old when my head swelled to the size of my body because of a bleed I was having in my head.

Since then I have had a blood transfusion everytime I lost a tooth, fell off my bike or had a period. So it all adds up after 26 years!

I can not donate blood. My blood does not clot properly and I do not have enough Iron so I depend on the kindness of stangers when I need blood.

I've often volunteered at Blood Donor Clinics so I know the process, you get questioned, you get a poke and then you are done!

I lie, it's not that easy, sometimes you get light headed, sometimes it takes more than an hour for your veins to produce a unit of blood and some people get quite nauseated.

But in the long run, it's worth it. You can donate every 56 days and with one donation you can save up to 3 lives. Thats pretty magical. In the time you spend playing around on facebook, you could save 3 lives, plus, the life you save could be your own!

So please please please donate blood! Please!

Independence

I woke up in the middle of the night last night throwing up. It might of been the morphine or the gravol or the robaxacet. Who knows.

I hate throwing up, it is one of the worst feelings I can think of. My dog lily got up with me and sat by the bathtub watching me. It's nice to have her company.

I am on painkillers because of a bleed I am having in my shoulder. I bleed can occur in a joint or a muscle. Blood pools in that area and irriates the muscles and nerves and causes pain.

It has been 10 months since I've had a blood transfusion (the longest i've ever went in my life) so I shouldn't complain. But being in pain isn't great either. The morphine makes me drowsy and if I don't take it the pain becomes unbearable so it's lose lose.

I am at my Dads house for the night. I am sleeping over because my fiance is out of town working and neither one of them really wants me home by myself when I am in pain like this.

I am so lucky that I have people who care about me and help take care of me, but at the same time I wish I was out doing the normal things a 26 year old would do, like work full time, or raise a family.

For the time being my doctor has recommened that I only work part time. It sounds great right? Its not, its fustrating to be working at a cofffee shop, to not be using my degree and to only have half my normal income.

I do enjoy sleeping in and I have been a lot healthier since the switch to part time work, but my confidence has taking a huge hit.

I guess at some point I may go back to full time we'll see how it goes.

Rather than feel sorry for myself I'm going to go torment my dad!

Day One

I am starting a blog to tell you about what it is like to live with Severe Factor 5 hemophilia.
Hemophilia is a bleeding disorder, factor 5 is the clotting factor I am missing and severe refers to the amount of factor 5 I have in my blood, less than 1% thus, it's considered severe.

There are 150 reported cases of Factor 5 in the world. It doesn't run in my family so the chances of me getting factor 5 is something like 1 in 44 million. Something like that.

Sometimes I wish I could of won the lottery instead, something rare like that, but here we are.

The goal of this blog, is to maybe help some other people who are out there living with Hemophilia or a chronic illness, but most of all it gives me something to do when i'm having a bleed!