My Morna

So, one of my favorite nurses of all time is retiring and so I took a few minutes to write about her. Anyone who has had a great Hemophilia nurse will know what I mean!

My Morna

I had the pleasure of meeting Morna about 5 years ago when I first moved to Calgary. in the short amount of time this tiny woman has made a huge impact in my life.

Morna is the one of the nicest nurses I have had in my whole life. She is kind, caring, knowledgeable and most of all she does what is best for her patients.

She is not only a nurse to the patients she sees on a daily basis but an advocate to patients with bleeding disorders all over the world.

My favorite part about Morna is that her nursing doesn't  stop at the end of her shift she can always be seen with a big smile on her face at all the Hemophilia Society events.  She's even gone as far as to make special quilts for patients when they aren't well.

After meeting Morna and seeing how great she treated me in the hospital my father and fiancee felt a lot better about me being at the clinic.

Morna has always encouraged me to do my best and to work hard. She is the one who got me involved in the Hemophilia society in the first place and now it is five years later and she still inspiring me to try and help those dealing with bleeding disorders.

As I said before Morna is always pleasant and happy but I have never seen her as happy as when she is with her granddaughter and I am so happy that she will be spending lots of time with her. Anyone who gets to be around Morna is certainly blessed.

I know I feel that way whenever I am around her.

I will never forget the kindness she has sown me as long as I live and I pray that all Hemophiliacs have a chance to have someone like her as their nurse.

 

Treatment For All

So, I read a very sad story this morning on a friend of mines facebook page. A young man, suffering from Hemophilia passed away on September 20.
He died because he could not afford treatment for a bleed. He died because of money. The thought of this breaks my heart.
If it had been a freak accident or something it would still be very sad but the fact that it was over money is disturbing.
This young Hemophiliac was studying to be a doctor because he wanted to make life better for others.
I've had severe bleeds in my life and the pain was unbearable. The pain he must of went through leading up to his death must of been one hundred times worse than anything I've had to go through.
He must of suffered a long slow and agonizing death. Treatment for Hemophilia is very expensive. Factor concentrates are very affective but can cost up to 10,000 for a single bleed.
I know that we are working on Treatment for All but when you read stories like this, it's obviously not fast enough.

Please read the rest of this story at http://www.mid-day.com/news/2012/oct/231012-mumbai-HC-order-comes-a-month-late-for-student-with-haemophilia.htm

Wedding Woes

So, I am suppose to be just getting back from a wonderful trip to Newfoundland. But alas, I am just coming off bed rest. The day we were suppose to leave I ended up being in so much pain I could hardly walk. Zane left for his trip and Monday I went to the hospital for a blood transfusion followed by 4 days of bed rest.
It turns out I had a ruptured ovarian cyst and that was the cause of all the pain.
I was really disappointed and really sad. Being home alone was a bit depressing but I was blessed enough to have a few friends and family come and visit and that made it bearable.
Zane had a wonderful trip to Newfoundland. He was there for his friends and said the wedding went off perfectly.
This is not the first time I've had to cancel a trip and I'm sure it will not be the last. It's actually not even the first time I had to miss a wedding.
In the end, the main thing is everyone had a great time at the wedding and I am on the road to recovery.

 

Time Bomb

So, lately I've been having a few aches and pains. It finally came to ahead Sunday night when I woke up at 3 in the morning in unbearable pain. A hot bath and a few percocets later Zane dragged me into the Clinic. An Ultrasound revealed I have an ovarian cyst. The problem with this is that it will either grow and rupture which means a few transfusions, a hospital stay and lots of pain, or, it could shrink and I'll never have to deal with it again.

The tricky part is I am suppose to be leaving for Newfoundland on October 1st. The action plan is I will getting an ultrasound on September 27th so by then if the cyst has grown I will be advised to cancel my trip and if it shrinks I will be on my marry way.

Either way it is very frustrating! I've been looking forward to this trip ever since I left Newfoundland back in July. I'm also upset because I feel like a ticking time bomb. When this cyst does rupture I know I am in for a lot of pain. The last time it happened it took 16 units of blood and lots of morphine before I felt better and I just don't feel like going through that again.

In the meantime I've been googling a few things I can do to get rid of cysts naturally. These things include, no caffeine, no sugar and no carbohydrates some of my favorite things.

At the end of the day Zane and I are happy and mostly healthy so that's blessing enough!

Youth Conference

So, I spent the weekend in Toronto for the Canadian Hemophilia Society National Youth Committee retreat.

The weekend was all about advocacy. We had 25 participants and everyone was friendly, kind and seemed very interested in getting involved. 

One of the first presenters was David Page, the fearless leader of the CHS. He told us about WHY we are involved, WHY are we doing this. His presentation was great, perhaps my favorite of the weekend. What I took away from it is that we need to stay involved to ensure we have a safe blood supply, access to said blood supply and that our clinics are running as they should be. 

A huge part of these conferences are what happens after the presentations. Eating supper together and hanging out gives us a chance to talk about our own experiences.

I love spending time with the Youth Committee its the only place where you can discuss which pain killers you like best, talk about all the different hematologists and argue about who has the biggest chart. It's so different being around people who are just like me. Well almost just like me, the boys gave me a demonstration of how they infuse their product. I was so impressed and so jealous. It took them about 5 minutes to give themselves an IV an infuse. The product they use is recombinant so it contains so human blood product and it is a concentrate so its a small little vile. Within minutes they bring their levels up to normal and are on their way again. I asked them how it felt and they said they felt no different. 

I am so jealous because for me to do that takes a trip to the HTC, an exam from a Hematologist, often times diagnostic imaging, starting an IV, Benedryl, and 4 units of Fresh Frozen Plasma which takes at least 4 hours at the best of times. 

I feel like my life would be completely different if I had a product.

At these conferences we also talk a lot about research and advancements in the treatment of Hemophilia and this is another area that makes me jealous because while other factor treatments are moving forward there hasn't been any progress with the treatment of Factor Five since it was first diagnosed in 1944!

Octaplas or Octaplasma is a new treatment I am hoping will be effective for me but it is still old fashioned compared to the some of the other treatments. 

Overall, I had a wonderful weekend, I laughed and enjoyed every minute of it! The goal of the Hemophilia society is to ease the pain and suffering of those living with bleeding disorders and this weekend certainly made me forget about Hemophilia. 

Toronto Bound!

So, tomorrow I head about to Toronto for a conference on Advocacy. This is put on by the Canadian Hemophilia Society and the National Youth Committee, so as the co president of the committee I will be helping out and speaking.
This year we will be discussing Advocacy. I am really looking forward to it. I think it's important for youth to learn about how to advocate for themselves and a great introduction into the Canadian Hemophilia Society which I also think is really important.
I must say I really enjoy the conferences once I get there but in the time leading up to it I do stress a lot about if I will get sick or not before I go or if I will get sick while I'm there. I stress and stress about it to the point where its not always enjoyable for me to go. I know when I get there and see all my friends I'll be fine.
I will be sure to follow up with how the conference went!
Pray I have a healthy trip!

 

100 Followers!

So, it is a very proud day for me! I've reached 100 followers. When I started this blog I wasn't 100% sure what I wanted to do with it and where I wanted to go. Now, two and a half years later I am still not 100% sure but I do know I love writing it and I love it when people comment and tell me what they want to know about.
So far I've met many wonderful people and have managed to accumulate 100 followers!
Zane says he will buy me a treat for reaching this goal. Right now I'm deciding between Leonard Cohen tickets or some new lululemon pants. I've loved Leonard Cohen ever since I saw a show about him in High School. I love his music but most of all, his poetry. My favorite poem of all time is as follows:
“Love is a fire/It burns everyone/It disfigures everyone/It is the world's excuse for being ugly.” by Leonard Cohen.
Thinking about my blog gets me to thinking about my last ordeal in the hospital back in April. It seems like the longer I go between bleeds the harder is it. For the past few months I've felt somewhat normal besides a month long UTI and I've grown accustom to this health life.  Last week I thought I had a hip bleed and I couldn't seem to wrap my head around going into the hospital. I'm praying I can go another 4 months without having to go to the hospital but that's part of the fun I guess not knowing.
Thank you so much to all of my followers I really appreciate you reading and all of your comments Here's to 100 more followers and 100 years of health!