Wednesday, January 15, 2014


So,  yesterday on my way home from the hospital I received some sad news. My friend David, passed away. He was only 30 years old and had been suffering from a rare form of cancer. I don't know all of the details as I have been pretty self involved over the past few weeks as I have not been feeling well. 
I met David about 7 years ago when I first got involved with the Canadian Hemophilia Society. We met at the first conference I've ever attended-a youth conference in Orilia, Ontario. We spent the weekend chatting, laughing and playing games. Over the next few years David and I worked on the Volunteer Development Committee as well as the National Youth Committee. David was so kind and gentle and so friendly to everyone he met its so sad to think he is no longer here.
I can't help but think how unfair it is. For a long time I use to think that it was one disease per person but over the years I've learned that no one is exempt from pain and illness. 
I can't imagine how sad his family must be as I know that his Hemophilia family is devastated. 
I didn't know David was sick and I never got a chance to tell him how wonderful he was. I never got to tell him how important all of his work with the Hemophilia Society was and I never got to say goodbye. 
I suppose nobody gets to say goodbye we don't know how long we are on this earth for and all we can do is try and enjoy it while we can. 

Thursday, January 9, 2014

Blood Brother

So, I am not sure if you have ever heard the expression but people in the Hemophilia community sometimes call each other Blood Brothers. I had the joy of growing up with two older sisters but I have never had a brother. I always thought people who had older brothers were lucky. They had someone to watch out for them, someone to screen their boyfriends and someone to scare away bully's. Anyways, once I became involved in the Hemophilia community I found myself surrounded with blood brothers because as you know, Hemophilia is rare in females. They often call me sister and I have to say I just love it. I recently had to let down one of my Blood Brothers and I feel terrible about it. He asked me to speak at a conference he is having next week in New York City but as you can tell from last blog post I'm not really fit for travelling. I think what my friend has taken on and organized is amazing and I wanted to support him so badly but my health got the better of me and I had to cancel. 
I will someday get to speak at a conference again and I will visit New York City of these days but first I must focus on getting better.
The good news is he has planned for some wonderful speakers and I will be a part of it through a short video I will record and he will the present to the group.
The sad part is I cancelled when I had my calf bleed because I thought it was best for my health I never imagined I would be in the hospital again so quickly. I guess it just validates my decision for me. 
If any of my blood brothers are reading this I love you!

I've attached a picture of me and one of my favourite blood brothers of all time. He passed away but I still think of him often and miss him. 

Wednesday, January 8, 2014

Follow up!

So, I met with my Hematologist today and they have contacted the head of the blood bank. They are waiting for the to do an internal investigation as to what happened and then we will all sit down and discuss the outcome. As for now I will wait and see what comes of that and then go from there. As for my medical follow up I seem to be in less pain each day. I still have a fairly large hemorrhagic cyst on my ovary to it will either rupture and bleed or absorb and go away on its own. I am feeling a little bit like a ticking time bomb and I am praying it just goes away on its own. 
Right now I am really uncomfortable I still wake up 3-4 times in the night and I am missing working like its my job. 
I'm trying to wrap my head around the whole ordeal and trying to get back to normal I have to say it seems like the emotional stress of it all takes longer to overcome than the physical aspect of it all. My greatest fear is that I will day no longer to be able to cheer myself up and I'll end up being one of those grumpy, bitter people that you hate to be around. As of right now between my wonderful friends and family I always manage to bring myself around I just wonder sometimes how many times I can get knocked down and still get up with a smile on my face?

Tuesday, January 7, 2014

Blood Bank Mishap

So, as if things haven't been bad enough I found out halfway through my blood transfusion last night that instead of giving me Fresh Frozen Plasma like they said they would I was given Octaplasma. When the first two units were hung I had been given 50 mg of benadryl and codeine so I wasn't paying attention.
You see by the time I get to the hospital I am like a runner at the finish line. I collapse at hospital doors and am really not at my best. I am definitely not up for cross checking units of blood and i really don't feel like I should have to.
I feel so betrayed and frustrated i could scream. I go to the hospital in hopes of getting help. I don't go there looking for things to be made worse.
So now I am trying to recover while at the same time thinking about what actions I can take so this doesn't help. I obviously can't trust the hospital so I am thinking about maybe hiring a nurse or some sort of patient advocate to come in with me each time I require treatment its going to cost me money but I don't know what else to do. 

I'm too exhausted to come up with a title for this post

so, it turns out the cause of all my pain is an ovarian cyst. I've had lots of these in the past and they are always very painful. Anyways its not the end of the world but I have to say I am so sick of being sick. In my entire life this is the closest Ive ever had to separate medical problems. Normally its at least a month in between episodes but this time it was only three weeks to the day. I am starting to feel a bit better but its feeling very anti climatic. You fight through the pain and get better but to what end? Anything else in your life that you work at or spend a lot of time at there is a reward. When it comes to illness nobody wins. Its draining emotionally, financially and physically and when you are finally better all you have to show for it is a small pay cheque and a messy house. I guess I am just feeling so discouraged because I haven't had adequate time to recover and I won't this time either. 

Sunday, January 5, 2014

no rest for the wicked

So it feels like ever since I got back from Newfoundland I have been in rough shape. First with the calf bleed and now with this abdominal pain. I went to the doctor and she didn't seem to think it was anything serious but that was three days ago and I am up about every four hours in pain. 
I've been taking percocett and Tylenol to manage the pain which makes me think its something more serious than just an upset stomach.
I've been trying to avoid going to the emergency room because that place is an absolute nightmare.
Tomorrow I will go into my Hemophilia clinic and see what they have to say about the whole ordeal. 
Part of me is thinking it can't be that serious since its been going on so long, in my experience ruptured ovarian cysts are much more painful and so are gallstone attacks. The other part of me is thinking it must be something going on because no one has a stomach ache for a week and wakes up in the middle of the night in pain. 
I sometimes wish I just had an ultrasound machine my my house so I could inspect myself maybe someday.
In the mean time  I will continue my routine of eating Popsicles, getting in the bath and resting on the couch. 
Hopefully we will get to the bottom of this tomorrow. 

Thursday, January 2, 2014

Happy New Year?

So, this time last year I was in the hospital. I had just finished training for my new job on December 28th, 2012 and then rang in 2013 in the foothills hospital. I was admitted with severe abdominal pain and was treated to a week of blood transfusions, fluids and lots of pain meds and tests. 
I was so happy that this year I was able to celebrate with my friend but as luck would have it as of January 1st I have found myself in a lot of abdominal pain. 
I think a normal person would just suspect a stomach ache but I am starting to worry that it's something more serious like a gall stone attach, a ruptured cyst or some other foolishness. 
I feel like ever since my trip to Newfoundland I have just been so sick, first with the calf bleed, then the flu and now this mysterious pain. 
I am glad to be starting another year, we are working on buying a house and eventually starting a family but part of me can't help thinking about what madness is waiting for me around the corner. 
Here is a picture of Zane and I in 2013 ringing in the new year in the foothills hospital and then in 2014 ringing in the new year with our Puppy.