Wedding woes

So, there are only 61 days left until the wedding! As if that isn't stressful enough I have been on my period since March 4th. I am starting to feel tired and dizzy when I stand up. I find it impossible to get out of bed in the morning and I haven't been able to go to the gym or go for a walk in a while now I just don't have the energy. My family doctor thinks this could be from stress and I have to say I agree with her. It wasn't my best idea to try and lose 50 pounds while starting a new job and planning a wedding for 200 people in a different province! But alas here we are. The wedding has taken on a life of its own and in the past 6 months three of our parents have been hospitalized, and two have had surgeries. Its been a stressful time to say the least and now I find myself not feeling great and just over all pretty exhausted. The trouble with just being a little bit sick is that you can't call in sick to work for being a little bit tired and you can quit your every day life because you are a little bit sick. There is always work to be done. Right now I am waiting for my blood work to come back. If my levels are low I suspect they will infuse me. If not, I suspect I will start a regimen of iron and possibly iron infusions. Of course I am just speculating. My levels could be just fine and I could simply be tired from writing out seating charts and making tiny homemade flowers out of paper. Either way I am counting down the days until I am dancing at my wedding hopefully happy and healthy with all of our friends and family around us. 

Happy World Hemophilia Day!

So, today is WORLD HEMOPHILIA DAY. I woke up this morning to find an e mail from the mother of a Hemophiliac who recently passed away. The thought that my blog could give her a little tiny bit of comfort made me feel great. Hemophilia is a terrible affliction, I wouldn't wish it on my worst enemy. It also affects such a small group of people that I feel like sometimes we get swept under the rug. Not a lot of people are out there fundraising and advocating for Hemophilia, thus we have had to become our own advocates and canvassers. Sometimes I feel like between advocating for myself and being sick and trying to raise awareness I am completely exhausted.
The issue of Hemophilia care will never stop being important to me but right now my main focus is my wedding. Only 92 days away. I have to say its been so nice to have something pleasant and fun to focus on. I love thinking about and planning the wedding.
I think if ever bride had an awful chronic illness to contend with they would quickly learn to not stress about the little things.
One thing I worry about is getting sick for the wedding but that is one of the joys of being a hemophiliac you never know when you are gonna get sick and no matter how hard you try you can't predict it.
All you can do is take it one day at a time. Today I wish everyone a Happy and Healthy Hemophilia Day and I pray everyone that someday everyone has access to care and that they have someone to go out for supper with for Hemophilia Day!
 

Hinton in my heart

So, before moving to Calgary, Zane and I lived in Hinton, Alberta. While living in Hinton I worked as a reporter just like April O'Neil. During this period of my life I had the pleasure of meeting some wonderful people including Robin Garreck. Robin now owns her own newspaper (which is pretty amazing) and she recently wrote an article about how they are shutting down the blood donor clinic in Hinton.
Please take a minute and check out the great article and overall awesome publication at http://hintonvoice.com/keep-the-pin-take-the-blood-p2240-519.htm.
A lot of small towns have had this happen to them and honestly I'm not always 100% sure why they decide to shut them down but I now it affects a lot of people. First of all its very discouraging when you want to do something so heroic like donating blood and them someone tells you, you can't. Secondly, a vampire like me does not like to hear about clinics shutting down. As I've mentioned before I've had more than 2,000 blood transfusions in my life and will surely need many more. If it wasn't for the kind hearts of people like Robin I would not be here.

Since we are on the topic of blood and blood donation, I would like to draw your attention to the for profit blood donations clinics that are being debated as we speak.
As a frequent user of Plasma products I am uncomfortable with the thought of people being paid for donations. Don't get me wrong I think that people who donate blood are wonderful and certainly deserve praise. The reason I am uncomfortable with it is because I was always told that statistically blood is safer from volunteer donors as oppose to paid donors.
My only concern is the safety of the blood. We certainly do not need another tainted blood scandal.






 

My Bees Knees

So, last Tuesday Zane went in for surgery to repair his torn ACL. This whole process has been going on for 16 months now and Zane is still in pain and finding it hard to walk around.
We were very blessed to have his Dad come to help out for a week and everything went well in the surgery.
It's really hard seeing someone you love in so much pain. I also found it really stressful while he was in the surgery. My dad came to the hospital to wait with me which was really helpful. Now Zane's full time job is doing exercises on his knee and my new full time job besides my other full time job, is making sure Zane is happy and healthy and well fed.
People often say they would go in someones if they could and I think honestly I really would of went in Zane's place. Watching him get an IV and seeing him hooked up to oxygen was really hard. At the moment we are safe and healthy for the most part so that is really all anyone can ask for. Please keep Zane in your prayers and hopefully we'll be up and dancing around soon.

 

Carry On

So, the wedding induced stress dreams have begun! Last night I dreamt my wedding dress came in and it was too small and bright blue. I also dreamt my photographer cancelled at the last minute and the music at the church wouldn't work. Oh my, i'm trying to remain calm and work on the wedding bit by bit but it certainly isn't easy. I'm really struggling with getting back into things after my week in the hospital. First of all I find it hard because I know that there are so many people are are in the hospital who are very sick and suffering and some who will never leave.It's not easy to drop everything in your life for a week and I know it takes a toll on the people around me. I know it wasn't easy for Zane to work all day then come to the hospital all night. I know it wasn't easy for my Dad to watch me cry in pain for hours. There is certainly a lot of guilt I think that comes with having a chronic illness. I feel guilty all the time for the things I have had to put my family and friends through.
 I also find it hard because I know its only a matter of time before I am back there again. Maybe I am just a little bit sad tonight because it is Charlie's birthday. It would of been his 63rd birthday today.
Charlie has been gone for three years now and I still miss him everyday. I hope when I pass away, along time from now I have even one person who misses me as much as I miss him. Life is short and although it might not always be easy we have to do the best we can each day!
 

The Centre for Blood Research

So, here is the finished product of an interview I did for the Centre for Blood Research.
I like to tell my story with the hopes that it will help other people or maybe make people feel better about what they are going through.

If you get a chance you can check out the article here:
http://cbr.ubc.ca/2013/01/04/hemophilia-is-for-girls-ryanne-tells-her-story/

Thanks for reading!

 

In sickness and in health

So, Friday night I woke up at 3 am in so much pain I couldn't stand it. I woke Zane up and early Saturday morning we ventured into the hospital.
I must of looked awful because my the time Zane parked the car the triage nurse whisked me into a room and I began a 10 hour torture process.
I met the Emergency room doctor and she didn't seem overly concerned about the state i was in. After an IV was started I was given morphine for pain and maxeran for nausea. Anyways, to make a long story short the emergency room Doctor decided she would send me home. What in the world she was thinking I will never know. I panicked, I called the hematologist on call (which I had already done before) and pleaded with him. He said he agreed to send me home as well. I felt awful, I didn't know what to do I felt helpless. I won't go into detail about the next part but basically my darling Dr. Poon from the Hemophilia clinic swooped in and saved me.
Eventually Zane was exhausted and Dad came in to take a turn at the circus that was the emergency room.
For about 6 hours I was in a loop of taking a shot of morphine, getting up to go to the bathroom then vomiting violently for about 5 minutes.
A different Doctor eventually wandered over and asked how I was doing, I figured by the moans and groans he would know I wasn't doing well but I played along and answered the same questions I already did for the triage nurse, the emerge nurse, the emerg doctor and the hematologist on call. He eventually said What do you think it is? and I said well I'm not sure because I normally feel better after my blood transfusion. He looked puzzled and said, you know theres no actual pain killer in the blood transfusion right? I was so insulted and so confused as to why he would state something so obvious but I often find emergency room doctors to be cold, unsympathetic and condescending.
I would spent the next 5 days in the hospital getting an EKG, Blood Work, CT scan, two ultrasounds and 8 units of plasma.
To treat the pain we moved from Morphine to fenteyl to percocet and I am sad to say i am still finding myself in pain. It's 3:00 am and I find myself unable to sleep.
I can't stop thinking about the whole ordeal. I am praying that I am in recovery mode and I will start to feel better so I can get back to my life. Only time will tell I suppose.