Tuesday, September 18, 2012

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!

Tuesday, September 11, 2012

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

Thursday, September 6, 2012

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!