Tuesday, September 2, 2014

Goodbye my friend

Last week i got the terrible news that my factor 5 friend in British Columbia passed away. I met her at a rare blood and bleeding disorder conference years ago in Vancouver. Her and her sister were there and I was so happy to meet them because it was the first time I had ever met another factor 5 face to face. I liked her as soon as I laid eyes on her because I knew she was one of the very few people in the whole world who knew exactly how I felt and what I had been through. We talked a lot at over the course of the weekend and I feel like I must of asked her a million questions.
Over the years we have kept in touch but I never did get to see her again. I don't know all the details of her death but I do know she suffered.
Her sister was right by her side the whole time she was hospitalized and I take comfort in knowing she was well taken care of in the end.





Sunday, August 31, 2014

Lately

So, apparently owning your home is a lot of work. Every day I am learning about all the new things that need to be taken care of. Not the mention the fact that we will have about 20 boxes to unpack. We are so happy to have our own home I feel so blessed and it is something I have dreamed about for a long time. And while some of our dreams are coming true we are also living a nightmare. One of our family members is terminally ill and Zane and I are devastated. Some days I get sad and cry about it, some times I pretend its not happening and some days I keep myself so busy I don't know whats going on. 
Knowing that someone you love is sick and suffering is a terrible feeling. I wouldn't wish it on my worst enemy and if I could take away some of her pain I certainly would. On the bright side she is going to come see our house and I am so happy she will get to see it. I am also praying that Zane and I will have millions of happy and healthy times here in our new home. 


Sunday, July 6, 2014

Home

So, I've been having stomach pain during the past couple days. An ultrasound showed that everything looks good, kidneys, ovaries and bladder. but now I am here in a lot of pain so I'm thinking maybe its arthritis I have had many really big bleeds in my hips so that could be it. I will go to the clinic on Monday and investigate further.
In other news Zane and I have purchased our very first home! We are very excited. I just love everything about it and I find myself staying up at night thinking about the colour scheme for each room. 
However, Zane and I have a very sick family member at the moment and it seems like no matter what we do its impossible to not worry about her and think of her every day. 
This blog is about my illness so I won't go on anymore about her illness but I can tell you our hearts are breaking.
If you don't have your health you really don't have anything. If anyone is reading this please take care of yourself as much as you can and enjoy your life every minute of it. 

Saturday, May 31, 2014

Mrs. McIsaac

So, I was recently at the pharmacy to pick up my prescription. I am so happy to say that I am on very few medications and I hope to keep it that way. Anyways, the pharmacy is the only place where I am still Ms. Radford, everything else I have changed to Mrs. McIsaac.
At first it was hard to get use to going by a different name but I really wanted to change it when I got married. To me it meant that we became a family.
When I talked about changing my name around other friends they would sometimes say, "I am not changing my name is reminds me of my mother in law." But being reminded of my mother in law is not a bad thing. Mrs. McIsaac, or Della or Momma Dee as I sometimes call her is one of the most caring, confident and funny people I have ever met in my life.
Ever since the day I met her she treated me like family and now that I am married to her son, I am very proud to be "Mrs. McIsaac."
Over the years the lines between in laws and relatives have blurred. I feel like Zane's family is my family and I hope they feel the same way about me.
In fact the night before our wedding I asked Della what time she was coming over for pictures. I almost forgot that she would be spending the day with Zane, her son.
I consider myself to be a passive person and over the years Della has encouraged me to be more assertive, she has tried to make me a more confident person. She has also raised the best husband I could ever ask for and for that I will be forever grateful.


Tuesday, May 13, 2014

Hope

So, Currently the World Congress is taking place is Austrailia. A good friend of mine told me that she met a wonderful wonderful person who is working on a factor 5 product. This is very very big news because as I've mentioned before there have been NO advancements in factor 5 products since it was first discovered in 1943.
I'm not sure of all the details but I've decided to make a top ten list of things I will do if I have access to a recombinant concentrate.

1. Get my wisdom teeth removed- According to my dentist I have 5 impacted wisdom teeth. At the moment they are causing me so much pain, my face is swollen and I can't hear out of my left eat. So I would elect to get these removed just so I wouldn't have to worry about it causing pain again.

2. I would get my gallbladder removed- I was diagnosed with gallstones when I was 12 years old. So far I've been able to control it with diet but I have had a few very painful attacks. It is always in the back of my mind that I will have an attack. Especially when I am travelling.

3. I would have a baby. If I had a concentrate I would definitely try having a baby or two or three.

4. I would play sports. I always loved playing baseball when I was a kid and I think I would start playing in a rec league or something fun like that.

5. I would travel move. At the moment I hate traveling because its always such an ordeal, I have to contact the hospital and worry about if I will get a bleed and how good or bad the hospital will be. 

Some of the others things I might do would be maybe a small tattoo, another ear piercing. I can't think of a full ten but staying out of the hospital as much as possible would be nice!





Monday, April 7, 2014

Janeway

So, I've talked about this many times but back in 1996 I spent about two years on and off in the Janeway Children's Hospital in St. John's Newfoundland.
I often talk about how I received 150 units of fresh frozen plasma, how I almost bled to death and how I missed an entire year of school but I never talked about the other children that I met while I was there. When you are in the hospital for such a long time you really begin to bond with the other children around you. The wonderful thing about sick children is that they are amazingly resilient. They don't act sick, they don't feel sorry for themselves and they don't complain.
For some reason I can't help thinking about two friends I met while I was there.
Jake was in the janeway forever, he was younger than me but seemed to be an old pro at the whole thing. All the nurses knew him very well and I remember he was always in a lot of pain but he was very sweet and kind. It seems to me like he was released and then must of relapsed and came back in. I remember him being wheeled back into unit 2B. I dreaded seeing him again because I knew it meant he was very sick. The whole thing was so traumatizing I still remember my patient number 201266. We all wore our hospital bracelets for so long they eventually cracked and fell off and they had to be replaced.
When I was finally released I found it hard to take off my bracelet it was so much a part of me I felt like it was something I survived and I didn't want to forget. For the record I did take it off but still have it saved in a photo album somewhere.
My other good Janeway friend was Amy, she had two old sisters and I remember them buying rabbit ears for the TVs in the hospital so they could watch soap operas.
Amy and I shared a room and even as a little girl I remember thinking that she was much sicker than me. I also remember how beautiful she was and her and her family seemed to have so much fun together even though she was in the hospital.
 A few months after I was released from the Janeway my mom found Amy's obituary in the newspaper. I was very upset but I don't think I really knew how to process it. Lately I just feel somewhat guilty that I was the one who survived. I also feel happy that they are no longer in pain because I can tell you first hard it was torture. If their families or anyone that knew them ever read this please know that they are remembered even by people that only knew them for a short time and please know that they they still inspire me to push through even when I feel like giving up.



Friday, March 28, 2014

whole health

So, I've been thinking that I need to start getting myself stronger and healthier. I am not 100% sure how to go about this but I have decided to start by losing weight. At the moment I could certainly stand to lose 50-60 pounds and I am determined to work on it in the healthiest way possible. 
I've joined the gym and have been working out every second day. I am also following a low carb diet and trying to cut out sugar as much as possible. 
Another part of my plan is to meet with a natural health practitioner to help me with vitamins and supplements and things like that. 
I know I have a hard road a head of me but I know that it will be so much better for me overall. 
Another goal for me is to have the weight gone by Hawaii. We are planning on heading there in October for 9 days. I have never been anywhere like Hawaii so I am really looking forward to it. 
I promise I will try my best to be as healthy as possible but it will certainly be hard.