Tuesday, August 31, 2010

Grief and Education

So, Tomorrow marks my second week of grief counselling. I have to say its been very helpful. I still think about Charlie everyday. Sometimes when I actually think about how I will never get to speak to him again and hear his big booming voice I get so overwhelmed I have to change the subject.
Tonight I am writing my blurb for my little presentation tomorrow. I will be speaking to some members of the Hematology department at the Foothills Hospital as well as some of the first year medical students at the University of Calgary. I only have to speak for 10 minutes but I want to make sure they have all the facts they need to understand my 27 years with this condition. I would also like them to learn a little bit about how it actually feels to be in and out of hospitals and how hard it is to communicate sometimes with doctors that aren't familiar with your condition.
I am excited to talk with them and hear what questions they will have for me but at the same time it's not like I have accomplished anything. I mean basically I was just born with this disease I didn't really do anything. But some days just living to tell about it feels like a big achievement!

Monday, August 30, 2010

Speech Speech!

So, I am looking forward to September for a few reasons. First of all it means the end of summer and in my mind hopefully the end of all the bad things that have been going on in my life lately.
September 1st, is also my best friends birthday. Being the best friend of a hemophiliac is not the same as being a best friend to a normal person. Over the years she has had to learn all the hemophilia lingo, bleeds, plasma, units, all of it! She's also had to spend more time then she would probably would have liked in the hospital.
And lately she has also added grief counsellor to her long list of skills.
Also, on September 1st I have been asked to speech at the University of Calgary to the first year medical students.
I am really looking forward to having the opportunity to speak to students who may be treating me in the future!
I have been asked to spend about 10 minutes talking about my condition and then the students will then be given the chance to ask me whatever they want.
If it was any other topic I might be a bit nervous about speaking in front of so many people but when it comes to Hemophilia I am an expert!
I've also dealt with lots and lots of medical students over the years as a lot of the hospitals I have been treated in are teaching hospitals.
In other news, I have been going to grief counselling and it has been really helping. Each day I've been feeling a bit better, but then at the end of the day and I don't cry I kind of feel guilty so I still have some issues to work out but its getting better!

Tuesday, August 24, 2010

Still Sad

So, today I went for my annual check up at the Hemophilia Clinic I saw my hematologist, social worker, nurse and had 12 tubes of blood taken. This is normal for me not much to report about it really. What has been hard for me over the past few days is Charlie. I can't get over it yet. I still have days where I just cry and cry. Any love songs or love scenes in movies I just lose it. I think it makes me think of my mom and how she lost the love of her life. I also cry because I don't think that I will ever find anyone in this world that loved me as much as Charlie did. He was so proud of me and never judged me. I start grief counselling on Wednesday so I hope that will help! Some good news today is that my mom was released from the hospital so that's a big relief. This blog was originally started to discuss my Hemophilia but this death has just turned my life upside down, so much so that lately disease has been the last thing on my mind.

Friday, August 20, 2010

When it rains it pours!

So, as if my family didn't have enough going on this summer my mom is now in the hospital! A few days ago she had an accident and broke her hip. She was rushed by ambulance to the hospital and had emergency surgery. They placed three pins in her hip to help repair the damage and they say it should take about 8 weeks of rest for her to recover.
First of all, my mom is the sweetest person in the world and does not deserve to suffer like this! Secondly, She is still grieving and it breaks my heart to think of her being sad sitting in a hospital bed in pain.
For a little while I considered going back to Newfoundland but after some thought I decided that I can't afford to go back, I also have a family here in Calgary that I need to consider and they need me too.
Luckily my sister is home taking care of her so that makes me feel a bit better about the whole situation.
My mom is strong and I know she will get through it I just wish I was there to take care of her especially since she sat by me and held my hand during countless hospital stays.

Monday, August 16, 2010

One Month Today

So, it has been one month today since my step father Charlie has died. I don't know why exactly but today has been a hard day for me. I thought once I got back to Calgary it would be easier ut of sight, out of mind kind of thing but I feel just as upset as I did in Newfoundland. I think what triggered me today was the fact that I began looking at wedding songs and it got me to thinking about how Charlie will not be dancing with me at my wedding. I guess I am also stressed because I have been putting my health on the back burner this summer and I am worrying about that. Coming up I have a doctors appointment with my hematologist, gynecologist, family doctor and dentist. I should be focusing on that but all I can think about is Charlie. I guess time heals all wounds and I can't wait for that day to come!

Sunday, August 8, 2010


Well, my family emergency turned into devastation.
On July 19th my step father died due to complications after surgery for a major heart attack.
I guess you never know how you are going to react in those situations and since I've been through so much in my life already I thought I would take it better I guess.
But I didn't, for the first day I just kept saying no there must be a mistake. I would not accept that he had passed away. It was easier that way and it felt a lot better than dealing with the fact that he actually died.
When he first took his heart attack I flew to NL within 24 hours. I was with my mom and my step father Charlie for every step of the way. Every blood test, ct scan, x ray and ultrasound. Mom and I spend 5 weeks in the hospital. It was really hard on all of us and I eventually ended up in the hospital myself. I spent about 4 days in the hospital and received 26 units of blood. By this time Charlie had had his surgery and was recovery nicely.
They took him out of ICU and his breathing tubes and iv's were removed. The doctors wanted me to stay until Monday but I wanted to get back to Calgary to be examined by my doctor that I had become so comfortable with.
I went to see Charlie right before I left. He was up and out of bed but the scars from the surgery were so brutal.
I chatted with him for a minute then walked away and said bye I love you.
By the time I got to Toronto on Saturday he had collapsed. He passed away Monday morning.
It is so hard dealing with illness and death but there are a few things I feel like I will never get over. I will never forgive myself for going back to Calgary and I will never forgive myself for not saying a proper heart felt good bye to him. In the end I know he loved me and I know he knew that I really loved him too!