I recently met a new friend. She's great. She has a 7 month old lab and she lives just next door so her and I have been taking our dogs for walks together.
It's nice to have a great so close and who also likes to walk!
Her and her significant other just installed a Hot Tub so this evening she invited us over to hang out in the hot tub!
This is where things get wierd for me. Her and I had just walked for two hours, so sometimes if you have a ache or pain the hot water sometimes causes your blood to rush to a particular area which can cause a bleed.
So I go over anyway and decide to just put my feet in! Of course they are also having beer and wine but I had to just suck it up and stick to juice.
Sometimes it's the little things like that, that make me feel the worst about my condition. When I was younger I would of just went for it simply because I didn't know any better.
Now I owe it to myself to take the best care I can of myself no matter what!
Friday, April 30, 2010
Saturday, April 17, 2010
World Hemophilia Day 2010
I feel like I have so much to write about today. First of all I knew all along that I had the best mother in the whole world but she really brought it to my attention again last night when we were talking about me growing up with Hemophilia.
The conversation started after we had both watched a great piece on global news calgary about a local little boy living with Hemophilia.
She said well you know Ryanne, I had fun growing up with you and your Hemophilia, I didn't know anything about it but we both learned as we went.
Now, I think that if someone can say that to you honestly after 27 years of transfusions and bleeds and crying and back and forth to all kinds of doctors and hospitals, not to mention all the regular child raising problems then that person is truly and angel.
Speaking of other angels in my life my friend Cheryl sat with me all day at the coffee shop for no other reason than to keep me company at My World Hemophilia Day booth!
My other friend Ange stopped in two and spent money on a Hemophilia ticket to a prize that i'm sure she doesn't even want!
I must say I was overwhelmed with support today! My father took us out for a delicious supper and my fiance Zane bought me a beautiful gift.
But thats not the point of this day. The point is to raise awareness to help those living with Bleeding Disorders and remember the people who have passed away because of the disease.
A lady that comes to mind is Sharon, she lost her two sons to Hemophilia while they were both only in their early twenties. I am sure she would love nothing more than to have them there with her today no matter how sick they were.
I would also like to mention Zane's uncle Anthony who died due to complications of Hemophilia.
It may seem like a wierd thing to celebrate , a bleeding disorder, something that has caused so many people so much pain but I think the fact that I have survived is reason enough!
The conversation started after we had both watched a great piece on global news calgary about a local little boy living with Hemophilia.
She said well you know Ryanne, I had fun growing up with you and your Hemophilia, I didn't know anything about it but we both learned as we went.
Now, I think that if someone can say that to you honestly after 27 years of transfusions and bleeds and crying and back and forth to all kinds of doctors and hospitals, not to mention all the regular child raising problems then that person is truly and angel.
Speaking of other angels in my life my friend Cheryl sat with me all day at the coffee shop for no other reason than to keep me company at My World Hemophilia Day booth!
My other friend Ange stopped in two and spent money on a Hemophilia ticket to a prize that i'm sure she doesn't even want!
I must say I was overwhelmed with support today! My father took us out for a delicious supper and my fiance Zane bought me a beautiful gift.
But thats not the point of this day. The point is to raise awareness to help those living with Bleeding Disorders and remember the people who have passed away because of the disease.
A lady that comes to mind is Sharon, she lost her two sons to Hemophilia while they were both only in their early twenties. I am sure she would love nothing more than to have them there with her today no matter how sick they were.
I would also like to mention Zane's uncle Anthony who died due to complications of Hemophilia.
It may seem like a wierd thing to celebrate , a bleeding disorder, something that has caused so many people so much pain but I think the fact that I have survived is reason enough!
Monday, April 12, 2010
Factor
I'm sure I've mentioned it before but I have have had more than 1,000 blood transfusions in my life.
The costs of the transfusions, scans, blood tests and over night stays have cost me a total of $0.
Not one single cent for me to get the treatment I need. If a Hemophiliac does not get treatment it can cause life long damage. For example, if its a small bleed best case scenario it will clot on its own but only after leaving a small blood clot in the joint or muscle causing unbelievable pain. A big bleed can continue to bleed and bleed creating a huge mass of blood in the body which can push on internal organs, cause muscle wasting and of course lots and lots of pain.
I've always had access to plasma. I've had to wait long hours in waiting rooms, and fight with doctors to give me a transfusion but I've never had to worry about how much a hospital trip would cost me or how I would access care.
I've recently learned of a sweet little baby boy in the Phillipines. Factor is hard to get your hands on over there and when his parents can get it, it is extremely expensive.
I spend a lot of time thinking about how hard it is for me to live with Hemophilia. I never stop and think about how hard it is for other people who aren't lucky enough to have in a country with free health care!
The costs of the transfusions, scans, blood tests and over night stays have cost me a total of $0.
Not one single cent for me to get the treatment I need. If a Hemophiliac does not get treatment it can cause life long damage. For example, if its a small bleed best case scenario it will clot on its own but only after leaving a small blood clot in the joint or muscle causing unbelievable pain. A big bleed can continue to bleed and bleed creating a huge mass of blood in the body which can push on internal organs, cause muscle wasting and of course lots and lots of pain.
I've always had access to plasma. I've had to wait long hours in waiting rooms, and fight with doctors to give me a transfusion but I've never had to worry about how much a hospital trip would cost me or how I would access care.
I've recently learned of a sweet little baby boy in the Phillipines. Factor is hard to get your hands on over there and when his parents can get it, it is extremely expensive.
I spend a lot of time thinking about how hard it is for me to live with Hemophilia. I never stop and think about how hard it is for other people who aren't lucky enough to have in a country with free health care!
Thursday, April 8, 2010
Ryan White
Today marks the 20th Anniversary of Ryan White's death.
Ryan White was a regular kid who did some extraordinary things in the face of great difficulties. He was diagnosed with Hemophilia whn he was just a baby. He struggled with bleeds throughout his life and at only 13 years of age he was diagnosed with HIV from contaminated blood.
I can't imagine how difficult this must of been for a 13 year old boy to comprehend. Not only did he have his own emotions to deal with but people around him didn't understand HIV and he was banned from going to school and treated horribly by his community and the people he once called friends.
Ryan was not the only hemophiliac to be infected with HIV. I have read that about 50% of the Hemophiliac population was infected with hepatitis C or HIV during the contaminated blood scandle in the 1980's.
Many families had to watch their children suffer and deteriorate and die. It is absolutely heart breaking.
Ryan White tried to raise awareness about the disase all while keeping a smile on his face. I think he is a great role model. I think it's important for not only the hemophilia coommunity to
remember him but for everyone.
For more information about Ryan White visit www.ryanwhite.com
Ryan White was a regular kid who did some extraordinary things in the face of great difficulties. He was diagnosed with Hemophilia whn he was just a baby. He struggled with bleeds throughout his life and at only 13 years of age he was diagnosed with HIV from contaminated blood.
I can't imagine how difficult this must of been for a 13 year old boy to comprehend. Not only did he have his own emotions to deal with but people around him didn't understand HIV and he was banned from going to school and treated horribly by his community and the people he once called friends.
Ryan was not the only hemophiliac to be infected with HIV. I have read that about 50% of the Hemophiliac population was infected with hepatitis C or HIV during the contaminated blood scandle in the 1980's.
Many families had to watch their children suffer and deteriorate and die. It is absolutely heart breaking.
Ryan White tried to raise awareness about the disase all while keeping a smile on his face. I think he is a great role model. I think it's important for not only the hemophilia coommunity to
remember him but for everyone.
For more information about Ryan White visit www.ryanwhite.com
Monday, April 5, 2010
You got to do what you got to do!
I recently went to visit one of my hemophiliac friends at the Foothills Hospital here in Calgary.
I've been to visit him before when he had a transfusion but this time he was in with a bleed that the doctors still aren't able to fix.
I expected him to be a bit upset or maybe a little scared.
But I walked in the room to find him laughing and joking as if nothing was wrong.
I sat with him for about an hour. He was on pain killers and had an IV in but he didn't complain about a thing! He actually asked me how I was doing and listened to me complain about things going on in my life.
His treatment includes getting infused every 4 hours and blood work and CT scans and God only knows what else.
He is so strong and does it while appearing as though everything is fine.
I guess it's amazing what becomes normal to you after living with Hemophilia since birth.
I remember thinking how awful it is for him to have to spend all of Easter in the hospital but it didn't seem to bother him at all.
And now what I think about it i've spent birthdays, easter, Valentines Day and Christmas in the hospital and when you are in that situation I guess you just have to suck it up and do what you have to do!
I've been to visit him before when he had a transfusion but this time he was in with a bleed that the doctors still aren't able to fix.
I expected him to be a bit upset or maybe a little scared.
But I walked in the room to find him laughing and joking as if nothing was wrong.
I sat with him for about an hour. He was on pain killers and had an IV in but he didn't complain about a thing! He actually asked me how I was doing and listened to me complain about things going on in my life.
His treatment includes getting infused every 4 hours and blood work and CT scans and God only knows what else.
He is so strong and does it while appearing as though everything is fine.
I guess it's amazing what becomes normal to you after living with Hemophilia since birth.
I remember thinking how awful it is for him to have to spend all of Easter in the hospital but it didn't seem to bother him at all.
And now what I think about it i've spent birthdays, easter, Valentines Day and Christmas in the hospital and when you are in that situation I guess you just have to suck it up and do what you have to do!
Saturday, March 20, 2010
One Two Three Four
I spent 8 hours in the hospital on Friday. It took four tries to get the IV in but eventually we got it!
Four units of plasma later my pee was back to yellow!
We are still not sure what was wrong with me, blood tests, urinalysis and a CT scan revealed that everything was normal.
So I am home now safe and sound resting up.
It was my Dads turn to spend the day with me this time and it was nice because we got to spend some quality time together. Eight hours of quality time.
While at the hospital I also got to meet another hemophiliac. A factor one hemophiliac in fact, which is very rare!
It was interesting to meet with him and find out what his challenges are.
I also encouraged him to get involved with the Canadian Hemophilia Society which I think is a great idea for anyone. It helps you to realize that you are not alone and that there are people just like you struggling with the same things.
Four units of plasma later my pee was back to yellow!
We are still not sure what was wrong with me, blood tests, urinalysis and a CT scan revealed that everything was normal.
So I am home now safe and sound resting up.
It was my Dads turn to spend the day with me this time and it was nice because we got to spend some quality time together. Eight hours of quality time.
While at the hospital I also got to meet another hemophiliac. A factor one hemophiliac in fact, which is very rare!
It was interesting to meet with him and find out what his challenges are.
I also encouraged him to get involved with the Canadian Hemophilia Society which I think is a great idea for anyone. It helps you to realize that you are not alone and that there are people just like you struggling with the same things.
Thursday, March 18, 2010
A pretty good year
Well I am sad to say that tomorrow marks the end of a pretty good run for me! Tomorrow I am going to the foothills hospital to receive four units of Fresh Frozen Plasma (plasma is a part of your blood that helps you clot.) This next transfusion will be the first for me in a year. That is the longest by far I have ever went in my life without blood. Pretty exciting stuff!.
It all started about a week ago when I got a urinary tract infection. I went to the family doctor, got some antibiotics and went on my merry way.
Sunday night a noticed that well to be frank my pee looked like red wine.
So I spend the entire day today in the hospital it took four tries to get an IV, lots of blood work taken and a CT scan. Only to find thay well we can't find whats wrong with me.
I must say this is rare for me, normally after a few tests we know whats up.
The good news is my vitals are good so I don't think I am in any serious danger.
But I have to admit that when I completed the urine test and saw what was in the container I started to cry. I often bleed internally but when you actually see the blood its a different story. It's scary.
That wasn't the worst part of my day either, while I was in the bathroom I over heard Zane telling his work that he couldn't come to work because he wanted to be at the hospital with me. That really broke my heart. It is bad enough that I have to take time away from my life but when it starts cutting into the time of the people you love it really takes a toll on you!
On the bright side I am lucky enough to have someone that actually wants to sit by me all day and is nice enough to bring me chicken fingers and cinnamon buns!
So with that I will Thank God and head to bed as I have a long day ahead of me!
It all started about a week ago when I got a urinary tract infection. I went to the family doctor, got some antibiotics and went on my merry way.
Sunday night a noticed that well to be frank my pee looked like red wine.
So I spend the entire day today in the hospital it took four tries to get an IV, lots of blood work taken and a CT scan. Only to find thay well we can't find whats wrong with me.
I must say this is rare for me, normally after a few tests we know whats up.
The good news is my vitals are good so I don't think I am in any serious danger.
But I have to admit that when I completed the urine test and saw what was in the container I started to cry. I often bleed internally but when you actually see the blood its a different story. It's scary.
That wasn't the worst part of my day either, while I was in the bathroom I over heard Zane telling his work that he couldn't come to work because he wanted to be at the hospital with me. That really broke my heart. It is bad enough that I have to take time away from my life but when it starts cutting into the time of the people you love it really takes a toll on you!
On the bright side I am lucky enough to have someone that actually wants to sit by me all day and is nice enough to bring me chicken fingers and cinnamon buns!
So with that I will Thank God and head to bed as I have a long day ahead of me!
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