Hemophilia Christmas Party!

So, last night was the Southern Alberta Region of the Canadian Hemophilia Society Christmas party! It went really well! We had one of the best turn outs yet! The food was delicious and there was face painting and a visit from Santa! The highlight for me was being elected to my new position on the board. I am now the President! I am very excited and I will be sharing the role with another volunteer as well as three other awesome members of the executive. I have a few ideas for this upcoming year but my main goal is to ensure that things continue to run as smoothly as they have been and try to do as much programming as we can. We also do not have a lottery license so one of my goals is to get our lottery license so we can fundraise. So I am thinking with my new role I need to be more accessible so I must get a Apple iPod touch 8 GB (4th Generation) NEWEST MODEL. But since my position is a volunteer position I might just have to stick with the old cell phone I already have!

All I want for Christmas is my two front teeth!

So, I went to the dentist today, I had to get fitted for a crown. A crown is a little tooth piece they put over the damaged tooth. I must say it wasn't too bad at all! It only took about an hour and a half and there was no bleeding at all so I was very happy about that.

The bad part was having to brave the bad weather to go to the appointment. Luckily my Dad picked me up and we ended up having a nice day together! Speaking of the weather historically, I tend to have more health problems in the winter months. Almost all of my big bleeding episodes have occurred in the winter. I don't know exactly why but I think it is because the winter is harder on your body. Either way, the winter is my most hated time of the year. I love the way the snow looks and I love Christmas but it's definitely not a good time of year for me. I am hoping however that this year will be a good Christmas! I am planning on getting my momma a Karaoke Machine Singing Machine ISM1010 Home Karaoke System. She loves singing and so do I, so I think it will be fun for everyone well maybe not our family and friends because they will have to listen to us but at least it will be fun for Mom and I!

Sissies!

So, Zane and I are getting into the Christmas spirit by putting up our tree this weekend! I always love putting up the tree while listening to cheesy Christmas music is it bad that I really want to buy O Holy Night (CD/DVD)this year?
Anyways, I've been thinking a lot about the conference I just went to in Vancouver and I thought about how almost all of the participants were paired up for example, sisters, brothers, mothers and daughters. But my whole life I have never had that! Everyone in my whole entire family is pretty much healthy so I've never had someone in my family with Hemophilia. Until I met Tammy. When I was about 12 years old my mom came home and told me that we had another sister who turned out to be a carrier of Factor 5 deficiency. I was blessed to have one older sister, Kelli but when I found out we had another sister I was ecstatic! The more I get to know Tammy to more I find out how she is so much like us! The last time she was in Stephenville was for Charlie's funeral it was an awful experience but having Tammy there felt right. It felt like it should have always been that way, the three of us putting on our make up and getting ready in the bathroom, all of us having meals together and laughing and joking.
Sometimes I get sad to think about all the years I didn't get to spend with her but in the end I feel like I am so glad to have her in my life now!

Christmas Past

So, with Christmas coming up I've been counting down the days until I leave for Newfoundland! Only 26 days! I've got all of my Christmas cards filled out and I've decided to get Zane a Kindle Wireless Reading Device, Wi-Fi, 6" Display, Graphite - Latest Generation. This will be our first trip to Newfoundland at Christmas time in four years. The last Christmas we went home we got as far as the Edmonton airport and I felt like I was getting a urinary tract infection. I remember calling home and Charlie answered. I cried and cried and he said it's ok darling, it will be ok. The pain was excruciating and by the time I got to Deer Lake, NL I was besides myself in pain. Mom took me to the hospital and after taking a few antibiotics I started to feel better. A few days later an cyst on my ovary ruptured and began to bleed into my abdomen. Again I was in so much pain and the doctors would not give me any blood or pain medication. I was taken by ambulance to Corner Brook where they talked about doing surgery and all sorts of foolishness. Anyways to make a long story short, I was released from the hospital on Christmas eve and was told to take it easy. I remember Christmas morning sitting in a pile of wrapping paper and gifts thinking, this is the worst Christmas ever, I was exhausted, dehydrated and on top of it I had the worst flu I ever had in my life. But, at least we all together, our family dog Jessie was sniffing around all the gifts and Charlie was sitting in his big arm chair smiling. I never thought I would say this but I would give anything to have that Christmas back again. This year I am hoping to be healthy but I will never have Jessie and Charlie back again. I love Christmas and I am really looking forward to it but I know it's going to be a tough one!

False Alarm

So, after spending Friday night and Saturday day in bed my leg started to feel a lot better. I don't think anyone should ever do what I did, but I decided to suck it up and I went to the Christmas party with my friends. It was a beautiful party, they had an acapella group singing when we walked in, a DJ a live band and an acrobatic show. The food was absolutely delicious and Zane and I ended up having a really nice night! Had a woken up this morning in even worse pain I would not be singing the same tune but I woke up today feeling fine so I am really glad I went. Zane and I don't get a chance to get dressed up and go out very often so I am glad we went out. With that being said, I think that if you ever suspect you are having a bleed you should go to the hospital immediately you should never wait. Especially if you think it could be a hip bleed because the hip is such a large area you could bleed  into and end up in big trouble. Now that that scare is over I am moving on to Christmas!  I have been watching The Original Christmas Classics (Rudolph the Red-Nosed Reindeer/Santa Claus Is Comin' to Town/Frosty the Snowman/Frosty Returns/Mr. Magoo's Christmas Carol/Little Drummer Boy/Cricket on the Hearth) to get into the Christmas spirit and I am counting down until I go to Newfoundland, only four more weeks! Thank you all for your support and concern I don't know what I would do without all of your followers/friends!

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.