Bleed!?

So, I went to work today as usual and when I got home I checked my blog and I was very happy to see that I now have 55 followers! Anyways, after I checked my blog I stood up and I had a shooting pain in my hip down to my knee. It just came on all of a sudden and now I am walking with a limp and I am starting to think it could be a bleed. I`m not 100% sure if it is a bleed so I am just resting tonight and if it is still this sore tomorrow then I will have to go to the hospital. For people who have a recombinant factor such as Factor 7,8 and 9 Hemophiliacs if they think they are having a bleed they infuse right away. However, with factor 5 my only treatment is fresh frozen plasma which means I would have to go to the emergency room, wait around for hours, see a doctor, get a ct scan, wait for the results, then get a transfusion which takes an additional 8 hours. So you can see why I am a bit hesitant to go in.
I also don`t want to think it`s a bleed because we are suppose to go to a Christmas party tomorrow but bleeds don`t work on a schedule! I`m praying it`s a false alarm!
Luckily, Zane is very understanding so we are just taking it easy and see how things work out in the morning. So I`m going to sit back and relax and enjoy my movie night currently we are watching Scott Pilgrim vs. the World (Two-Disc Blu-ray/DVD Combo + Digital Copy).
Wish me luck!

50 Followers!

So, Today I woke up and came out and checked my blog site like I do every morning! But today I was so happy to find that I had 50 followers! I started this blog in February with only one follower (me) so I am very happy to see that there are 50 people who are taking an interest in my blog! As if that wasn't exciting enough I came home from work to find a bouquet of beautiful yellow lilies and eucalyptus leaves. Zane is always doing thoughtful things like that but it really meant a lot to me. He is always supportive and helpful and he has been giving me so much encouragement ever since we've been together. A lot of people have said to me I don't know how you go through life with a positive attitude but when I get to spend every day with someone like Zane it certainly makes things a lot easier!

Blood from Skin?

So, I've been reading some interesting articles lately about how skin has been turned into blood. I don't have all the facts, but from what I have read at cbc.ca, this is quite the medical miracle. If this process of turning skin into blood is approved then it is reasonable to believe that there will never be a blood shortage. Also, if you require a blood transfusion there is always a risk of having a reaction. In my life I have had several reactions including hives, anaphylaxis and a seizure. I am thinking that if one could get blood from their own skin then it would be reduce the risk of reaction as well as reduce the risk of contracting any blood born pathogens. My question is if my blood doesn't have factor 5 then would the blood produced from my skin contain factor 5? If so that would be great news for me! Still it's hard for me to believe that in the last 75 years there has been no progress at all in the treatment of Factor 5. The lady I met at the conference last week has been taking fresh frozen plasma to treat bleeds and now 75 years later I am still using the exact same treatment. I am not a scientist but from what I see there has been progress in so many diseases which I think is great, but it makes me sad to think that the only reason there has been no advances for my disease is because there is no market for it. That's the only reason, it's not because science hasn't advanced it's simply because there isn't enough money in it! I feel like I am worth the millions of dollars it would take to develop a better treament for Hemophilia Factor 5.

Home again Home again jiggety jig

So, I am home safe and sound from the Rare Blood and Bleeding Disorders conference in Vancouver. I must say I had a wonderful time! Vancouver is just beautiful and the conference was very informative. The highlight of the weekend for me was spending time with TWO factor 5 Hemophiliacs. One was severe and one was moderate but they both were in their 70's and had so much information and wisdom for me.
Any free time we had during the conference I spent getting a complete medical history of them. I felt that we had such a great connection and it was so encouraging for me to see two ladies, just like me make it to 70 years of age!
The focus of the conference was rare bleeding disorders through the life span so we had three hematologists speak on the early years, the reproductive years and aging.
Of course I had an opportunity to speak about my experiences and I realized that I am a much better writer than I am public speaker but I think i got my point across!
I also met 6 other people who live in Calgary so I have big plans for them to get involved with the society.
When you spend your whole life feeling different and like no one understands you and then you finally get to spend a whole weekend with people just like you, it's an amazing feeling.

It's conference time!

So, tomorrow I am off to Vancouver for a Rare Blood and Bleeding Disorders conference! I am really looking forward to it because there will be two factor 5 ladies there who are older and wiser than me. I am really looking forward to talking to them and asking them a million questions! I am also excited because I get to speak at the conference. I am speaking during a panel discussion that deals with Hemophilia through the lifespan and I will be giving the perspective of a young woman. I am much more at ease about travelling this time because my flight is only an hour and there will be Hematologist and Hemophilia nurses there for the whole weekend. Hopefully I will be healthy for the whole weekend and come back with some answers to my questions! Wish me luck!

Weighting

So, this is my most hated subject to discuss but I have to bring it up. At the moment I am overweight. All of my life I have never been bony or anything like that but ever since about two years ago I have been gradually gaining weight. It all started when I had a really bad bleed in my hip. I was out on steroids and bed rest which was a recipe for disaster. Once I was off the steroids I had to stay on bed rest and it took me a long time to recover. Anyways to make a long story short I have more weight on now than I would like! I have always felt like I could be skinner and over the years I have tried millions of crazy diets; Atkins, the curves diet, the low fat diet and this crazy soup diet where you only ate soup and bananas or something like that. Needless to say they never worked and here I am not feeling great about myself and fustrated!

This time around I've decided to do it properly so I'm working with a natural health practitioner and trying to loose weight the smart way! We'll see how it goes. In other news I've been following this great blog http://hemohijinks.com/. It deals with overcoming obstacles while still enjoying the things you love! I love it I must say! Check it out and while you're at it tell me some of your health habits I can adopt!

Style and Hemophilia

So, in my opinion it it's difficult to be stylish and a Hemophiliac. For example high heels. I love the way look and I love wearing them however, they aren't the best things to be wearing when you have a bleeding disorder. I didn't get my first pair of high heels until my first year of University. My second year, I got more courage and bought an even high pair of heels. However I attend Mount Saint Vincent University and to get to my dorm room I had to walk up a huge steep hill. Every weekend when we would get home from the bar we would begin the trek up the hill. After a night of dancing and standing in high heels I would resort to taking off my shoes and walking bare foot all the way. Now I am older and wiser so I only wear flat shoes. Another fashionable thing I always wanted to wear was earrings! When I was old enough to get my ears pierced I was told that it was a bad idea so I was stuck with magnetic, clip on and stick on earrings. They we never very fashionable, hard to find and really uncomfortable. However, today while shopping and the Chinook mall I discovered this clip on earrings that allow you to put any regular earring on! Very revolutionary for me!
I feel like I make a good compromise between what's best for me and what looks good.