Friday, September 13, 2013

Travel woes

The joys of having a rare condition just do not stop. Today I looked into my insurance with my work and they do not cover pre existing conditions. I know that it is not the end of the world and I will simply buy it some place else but I have to say I am so sick of having to take extra steps and precautions for every move I make. The world is really not set up for anyone with any sort of special need or anything out of the ordinary. I try my best to not get discouraged but sometimes I just want to scream. I know I am not the only one who needs special accommodations. What do these people do? How do they get through life? I know I find it hard enough I can't imagine having any other obstacles. I think when you have a chronic illness it is important to keep a positive attitude, but sometimes I don't want to have a positive attitude I want to take all the obstacles in my life and kick them over! But as anyone with a chronic illness will know, you can't fight it. You can play hopscotch with your friends all afternoon and try to pretend you're not in pain but eventually whether you like it or not you have to give in and go to the hospital. I use to have must more courage when I was a kid. Now I've gotten really good at convincing myself that I'm ok with missing out on things. For example "I can't wait to go to that party on Friday." "I'm too sick to go to the party." "I didn't want to go to the party anyway." It might not be true but honestly what are you going to do about it? There is no point in getting upset about it. All you can do it smile, make yourself some popcorn, turn on a movie and get some rest!

Thursday, September 12, 2013

Happy Birthday to Zane

So, today is my darling husband, Zane turns 28. I love when his birthday comes around. For the past three years we've been going to the same place and I have to say it is so nice to be surrounded by such great friends. Its funny because 9 years ago Zane and I bet on his 19th birthday. We were attending the same university and some of his room mates had invited us to their apartment to celebrate. As it turned out his birthday fell on a weekday and us girls wanted to start the school year off on the right track so we decided not to go to the party. I did however stop at the liquor store and buy him some beer just to say hello and thanks for inviting us. I ran up to his apt for about 5 minutes and said hello. He says that that was the moment he fell in love with me. I don't know if that is true but over the years I have come to really appreciate each birthday we get to spend together. Some of them I am in the hospital, some of them we are having a wonderful time but the main thing is we are always together. This is the first Birthday Zane has had since we have been married and I pray we get to have many many more together.

Wednesday, September 11, 2013

Fender bender

So I got in a small car accident last week. Ironically I was on my way to a doctors appointment at the hospital. I turned too sharply and scraped our passenger side door on a cement block wall thing. (Please feel free to laugh at my stupidity.) Anyways I suppose the main thing is that I am perfectly fine and that no one was hurt-not even the cement wall. I was very upset though because as I have come to learn anything to do with vehicle repair is very expensive.
The thing about car accidents is they are just that a complete accident and no amount of crying and eating chips can change that.
I am very happy to report that I am not hurt because as you can imagine a car accident for anyone with a bleeding disorder is bad news.
In case of emergency I always carry my factor first card in my wallet which contains information about my disease and contact information for my doctor. I also wear at all times my medic alert bracelet. I also have a contact in my phone called ICE which stands for in case of emergency it has all of my immediate family members phone numbers in case someone needs to get a hold of them. I really recommend everyone doing this but even more so for people with bleeding disorders. Oddly enough I was at another doctors appointment today and I had to return to the very same parking lot where I had my accident while I was walking to my car, I saw a lady back right into another car. The put her car in drive and took off. She didn't look for damage or anything. I guess the moral of the story is drive as safely as you can and put in as many safety precautions as possible!

Tuesday, September 10, 2013

University of Calgary

So, I spoke at the University of Calgary on Friday. This had been my third time doing this talk and I have to say I really enjoy it. I try and write a new speech every time and then the students ask me questions for about 40 minutes. The questions seem to range from everything to what a blood test on someone with factor 5 would look like to how things like a manicure or pedicure would affect me. As you must know I love talking about myself but I also like learning new things. During this talk we talked about the fact how other people with factor 5 deficiency even if they have less than 1 % they don't always have internal muscle and joint bleeds like me. For example there are two people I know with severe factor 5 deficiency who have only been treated a handful of times in their whole lives. This really baffles me because the longest I have ever been in my whole life without getting a blood transfusion as been one year. It baffles me and also makes me jealous. Not only do a have rare and strange disease but I have one of the worse forms of it! Oh well you gotta play the cards your dealt I suppose so while I do not love having this disease I am trying to make the best of it!