Friday, November 28, 2014

I'll have a blue Christmas without you...

So, my husband and I just finished putting up our first Christmas tree in our new house! We have a fire place to hang the stockings, a big living room for the tree and a beautiful mantel for the nativity scene. We are beyond blessed and I am very much looking forward to Christmas. Yet, I find myself feeling homesick every Christmas.
Perhaps this little joke will explain it:

"How do you tell which people are Newfoundlanders in Heaven?"

"They are the only ones who want to go home."

It's certainly not logical to long for a place that is 3000 miles away. It is cold and windy and damp and dreary. It costs more than 1000$ to get there and the journey is treacherous but every Christmas I miss "home."
I guess if you do the same thing every year for Christmas for 25 years then no matter what you do its just different, not bad but different.
They say that once you leave home you can never really go back and I guess its true. 
Even if I were to go home now its not the same, time has passed, and people near and dear to me have passed away. 
One of the things that bothers me the most is the main reason why we don't travel to Newfoundland for Christmas is because of my Hemophilia. 
One year we travelled home and I had a cyst rupture and bleed. I was in pain, I was bleeding internally and all the doctor in Stephenville would do, and this is the honest to gods truth, is give me a shot of vitamin K. It did ABSOLUTELY NOTHING. It was a nightmare. 
It was very scary for both me and Zane and thus we haven't returned to Newfoundland for Christmas since.
This year, has also been challenging,we've had two family members diagnosed with illnesses and of course my health hasn't been perfect either.
I am praying that Christmas will be wonderful and continue on into the new year! In the meantime I am gonna focus on all the good things we have in our lives.

A picture of Zane and I during our last visit to Stephenville for Christmas.

Tuesday, November 11, 2014

Glorious and FREE

So, today I had the pleasure of being interviewed by Matti Vann. She is an mother of a hemophiliac and is doing an amazing job to raise awareness about Hemophilia! You can read and hear all about her and what she is working on at her website at 
We discussed so many things and I feel like I could write 20 blog posts about our conversation but one thing that certainly stood out for me today was our heath care here in Canada.
Today is of course Remembrance Day here in Canada and I did find myself bragging about our medical system a little bit. I know that our system isn't person and I will admit that I know very little about the Medical system in the US but I will say that knowing I can get the medical care I need without worry of how I will pay for it is a blessing. 
I have many Hemophiliac friends in the US and it seems to me that if you have insurance you are good to go but if you are a Hemophiliac without insurance is can be very difficult. 
I hate the thought of Hemophiliacs suffering especially when they are suffering just because they don't have money.
I have heard horror stories from Hemophiliacs all over the world and I have my own,No health care systems are perfect but hopefully we will one day live in a world where all Hemophiliacs have access to care.
I must say talking to Matti really fired me up and got me excited about volunteering and all that good stuff. 
I was feeling a bit burnt out there for a while but I'm starting to think I'm ready to get back into soon. 
I look forward to sharing the finished product of the pod cast with y'all soon.

Sunday, November 2, 2014

Winter Blues

So, Winter has begun here in Calgary. Heavy, sloppy, wet snow starting falling on Saturday and hasn't stopped until late Sunday afternoon. Winter is a difficult time for me. Every time I leave the house I feel like I am at risk of falling, which for me is a big deal. Last winter I fell down when I was in Newfoundland and I ended up with a very bad, very painful calf bleed. 
I try to be as careful as I can I wear heavy duty winter boots but sometimes it just isn't enough. Even just slipping can cause muscle pain for a long time for me. 
The winter can also be isolating and depressing. Its harder for everyone to get out and the nights are longer. 
Most Hemophiliacs that I know say their health is worse in the wintertime and I have to say my visits to the hospital go up quite a bit in the winter.
This year I am trying to be a bit more proactive I am starting a diet tomorrow and a workout routine that I hope will keep me healthier mentally and physically over the winter. 
If that doesn't work I guess I will just have to move to Hawaii! 

Friday, October 3, 2014

My Angel Mom

So, my darling momma is up here for a visit. She normally comes up about once a year and I try to go home once a year. I am so happy to have her here. She is so pleasant and kind and sweet its a delight to spent each day with her. My mom and I have always been very close. When I was a baby I didn't like anyone else holding me, when I went to school I cried every day when my mom left the classroom and I didn't go to summer camp until I was 21 years old.
I do find it very hard living so far away from my mom but we talk every day on the phone and visit each other whenever we can.
My Momma is an interior decorated and ever since I was little I dreamed of having her one day decorate my house.
Now that shes up here my dream has come true!  Momma has been helping pick out colours and furniture and all that fun stuff.
Being around my makes me so happy and I have been trying to convince her to stay longer.
The only down fall of having her here is that both of our dogs like sleeping with her at night!

Saturday, September 20, 2014

Red Band Society

So, I recently watched the show Red Band Society. Its all about some high school children being treated in the hospital. I myself spent my grade 7 year in the Janeway Children's Hospital in St. John's Newfoundland. 
I had my 13th birthday in the hospital and I went to classes every day just like in the show. I can't relate to everything in the show but some parts really hit home for me. The title comes from the wrist bands the kids wear and I can completely relate to having a special attachment to your hospital band. The one I wore for that year was white and had my hospital number which I still remember 201-266. I had a hard time taking it off once I was released from the hospital and once I finally did, I couldn't part with it and to this day its at my mothers house in Newfoundland wedged in between two books.
Looking back on the whole experience I don't know how I got through it. Lately if I'm in the hospital even over night I just hate it. I guess as a child you are more resilient. 
The kids on the show have parties and hang out together which I can't relate to at all there wasn't a lot of fun to be had while I was there. I mostly remember spending time with my mom and dad. We would watch movies, make crafts and play games. Dad and I went through every Where's Waldo book ever made and I think mom and I were up to date on every soap opera going. 
Anyways my point is this is a very cute show and you should check it out. I bet a lot of my Hemophilia friends can relate to spending long periods of time in the hospital and the funny things we do to get through it.

Thursday, September 18, 2014

Best Friend

So, over the past weekend my best friend in the whole wide world came out to visit. It was her and her husbands first visit to Alberta so Zane and I were really excited to show them around.
They were only here for a few days but we managed to have an amazing time.
We couldn't of asked for better house guests as they were pretty much cooking and cleaning and walking our dogs every time we turned around.
Half way through the visit my arm started to get really sore and I was so torn about what to do. Part of me wanted to just suck it up while part of me was trying to be responsible so I decided to take it as easy as I could for the weekend then I went in to get checked out on Monday.
Of course, my friends were so understanding about me not feeling well. That's the best part about having a best friend like her she is so supportive, understanding and sweet. I honestly don't know what I would do without her. I hope everyone eventually meets a best friend like her and I hope I am even a tiny bit as good a friend as she is to me.

Wednesday, September 17, 2014

University Talk

So, I spoke at the university of Calgary a few weeks ago. This is my forth year speaking and I must say every year the first year medical students manage to ask me new questions!
This year they asked how my husband copes with me having Hemophilia and how I told him. I explained to them that living in a small town Zane knew I had Hemophilia before he even met me. I also explained to them that Zane has been nothing but wonderful and kind and caring with regard to me and my Hemophilia. I also pointed Zane out since he took the morning off work just to hear be blab on about things he already knows about. As soon as they saw him they gave him a huge round of applause which I thought was so nice because he deserves so many things and a big round of applause every day. Overall I think the talk went really well and I was happy to be a part of it. 
On a side note, my arm has been bothering me since Friday. I began taking percocet for the pain and on Monday I went in for an ultrasound. The test came back clear so I can only assume its muscle pain. My only complaint is that I am still in pain and now I am recovering from the percocet. Narcotics are nasty things and even if you only take them for a few days they make you grumpy and hot and sweaty and just feeling pretty yucky overall. 
I guess I panicked when the pain started because I did have a chest bleed a few years back and it was just excruciating. 
Anyways, I will continue to rest and ice my arm and I am praying that it feels better by Sunday so I can return to work. 


Tuesday, September 2, 2014

Goodbye my friend

Last week i got the terrible news that my factor 5 friend in British Columbia passed away. I met her at a rare blood and bleeding disorder conference years ago in Vancouver. Her and her sister were there and I was so happy to meet them because it was the first time I had ever met another factor 5 face to face. I liked her as soon as I laid eyes on her because I knew she was one of the very few people in the whole world who knew exactly how I felt and what I had been through. We talked a lot at over the course of the weekend and I feel like I must of asked her a million questions.
Over the years we have kept in touch but I never did get to see her again. I don't know all the details of her death but I do know she suffered.
Her sister was right by her side the whole time she was hospitalized and I take comfort in knowing she was well taken care of in the end.

Sunday, August 31, 2014


So, apparently owning your home is a lot of work. Every day I am learning about all the new things that need to be taken care of. Not the mention the fact that we will have about 20 boxes to unpack. We are so happy to have our own home I feel so blessed and it is something I have dreamed about for a long time. And while some of our dreams are coming true we are also living a nightmare. One of our family members is terminally ill and Zane and I are devastated. Some days I get sad and cry about it, some times I pretend its not happening and some days I keep myself so busy I don't know whats going on. 
Knowing that someone you love is sick and suffering is a terrible feeling. I wouldn't wish it on my worst enemy and if I could take away some of her pain I certainly would. On the bright side she is going to come see our house and I am so happy she will get to see it. I am also praying that Zane and I will have millions of happy and healthy times here in our new home. 

Sunday, July 6, 2014


So, I've been having stomach pain during the past couple days. An ultrasound showed that everything looks good, kidneys, ovaries and bladder. but now I am here in a lot of pain so I'm thinking maybe its arthritis I have had many really big bleeds in my hips so that could be it. I will go to the clinic on Monday and investigate further.
In other news Zane and I have purchased our very first home! We are very excited. I just love everything about it and I find myself staying up at night thinking about the colour scheme for each room. 
However, Zane and I have a very sick family member at the moment and it seems like no matter what we do its impossible to not worry about her and think of her every day. 
This blog is about my illness so I won't go on anymore about her illness but I can tell you our hearts are breaking.
If you don't have your health you really don't have anything. If anyone is reading this please take care of yourself as much as you can and enjoy your life every minute of it. 

Saturday, May 31, 2014

Mrs. McIsaac

So, I was recently at the pharmacy to pick up my prescription. I am so happy to say that I am on very few medications and I hope to keep it that way. Anyways, the pharmacy is the only place where I am still Ms. Radford, everything else I have changed to Mrs. McIsaac.
At first it was hard to get use to going by a different name but I really wanted to change it when I got married. To me it meant that we became a family.
When I talked about changing my name around other friends they would sometimes say, "I am not changing my name is reminds me of my mother in law." But being reminded of my mother in law is not a bad thing. Mrs. McIsaac, or Della or Momma Dee as I sometimes call her is one of the most caring, confident and funny people I have ever met in my life.
Ever since the day I met her she treated me like family and now that I am married to her son, I am very proud to be "Mrs. McIsaac."
Over the years the lines between in laws and relatives have blurred. I feel like Zane's family is my family and I hope they feel the same way about me.
In fact the night before our wedding I asked Della what time she was coming over for pictures. I almost forgot that she would be spending the day with Zane, her son.
I consider myself to be a passive person and over the years Della has encouraged me to be more assertive, she has tried to make me a more confident person. She has also raised the best husband I could ever ask for and for that I will be forever grateful.

Tuesday, May 13, 2014


So, Currently the World Congress is taking place is Austrailia. A good friend of mine told me that she met a wonderful wonderful person who is working on a factor 5 product. This is very very big news because as I've mentioned before there have been NO advancements in factor 5 products since it was first discovered in 1943.
I'm not sure of all the details but I've decided to make a top ten list of things I will do if I have access to a recombinant concentrate.

1. Get my wisdom teeth removed- According to my dentist I have 5 impacted wisdom teeth. At the moment they are causing me so much pain, my face is swollen and I can't hear out of my left eat. So I would elect to get these removed just so I wouldn't have to worry about it causing pain again.

2. I would get my gallbladder removed- I was diagnosed with gallstones when I was 12 years old. So far I've been able to control it with diet but I have had a few very painful attacks. It is always in the back of my mind that I will have an attack. Especially when I am travelling.

3. I would have a baby. If I had a concentrate I would definitely try having a baby or two or three.

4. I would play sports. I always loved playing baseball when I was a kid and I think I would start playing in a rec league or something fun like that.

5. I would travel move. At the moment I hate traveling because its always such an ordeal, I have to contact the hospital and worry about if I will get a bleed and how good or bad the hospital will be. 

Some of the others things I might do would be maybe a small tattoo, another ear piercing. I can't think of a full ten but staying out of the hospital as much as possible would be nice!

Monday, April 7, 2014


So, I've talked about this many times but back in 1996 I spent about two years on and off in the Janeway Children's Hospital in St. John's Newfoundland.
I often talk about how I received 150 units of fresh frozen plasma, how I almost bled to death and how I missed an entire year of school but I never talked about the other children that I met while I was there. When you are in the hospital for such a long time you really begin to bond with the other children around you. The wonderful thing about sick children is that they are amazingly resilient. They don't act sick, they don't feel sorry for themselves and they don't complain.
For some reason I can't help thinking about two friends I met while I was there.
Jake was in the janeway forever, he was younger than me but seemed to be an old pro at the whole thing. All the nurses knew him very well and I remember he was always in a lot of pain but he was very sweet and kind. It seems to me like he was released and then must of relapsed and came back in. I remember him being wheeled back into unit 2B. I dreaded seeing him again because I knew it meant he was very sick. The whole thing was so traumatizing I still remember my patient number 201266. We all wore our hospital bracelets for so long they eventually cracked and fell off and they had to be replaced.
When I was finally released I found it hard to take off my bracelet it was so much a part of me I felt like it was something I survived and I didn't want to forget. For the record I did take it off but still have it saved in a photo album somewhere.
My other good Janeway friend was Amy, she had two old sisters and I remember them buying rabbit ears for the TVs in the hospital so they could watch soap operas.
Amy and I shared a room and even as a little girl I remember thinking that she was much sicker than me. I also remember how beautiful she was and her and her family seemed to have so much fun together even though she was in the hospital.
 A few months after I was released from the Janeway my mom found Amy's obituary in the newspaper. I was very upset but I don't think I really knew how to process it. Lately I just feel somewhat guilty that I was the one who survived. I also feel happy that they are no longer in pain because I can tell you first hard it was torture. If their families or anyone that knew them ever read this please know that they are remembered even by people that only knew them for a short time and please know that they they still inspire me to push through even when I feel like giving up.

Friday, March 28, 2014

whole health

So, I've been thinking that I need to start getting myself stronger and healthier. I am not 100% sure how to go about this but I have decided to start by losing weight. At the moment I could certainly stand to lose 50-60 pounds and I am determined to work on it in the healthiest way possible. 
I've joined the gym and have been working out every second day. I am also following a low carb diet and trying to cut out sugar as much as possible. 
Another part of my plan is to meet with a natural health practitioner to help me with vitamins and supplements and things like that. 
I know I have a hard road a head of me but I know that it will be so much better for me overall. 
Another goal for me is to have the weight gone by Hawaii. We are planning on heading there in October for 9 days. I have never been anywhere like Hawaii so I am really looking forward to it. 
I promise I will try my best to be as healthy as possible but it will certainly be hard. 

Sunday, March 16, 2014

Happy Birthday to me!

So, I just celebrated my 31st Birthday. I can't believe I am 31 years old I have to say the time has passed quickly. I celebrated by having a birthday party at an Irish pub down the road. I had 34 wonderful friends show up it was pretty amazing. I had two birthday cakes and lots of presents and cards. I was very overwhelmed and happy I must say. Each year that I get to celebrate with my friends is a good year because I've spent many special occasions over the years in the hospital. I am slowly recovering from my three in a row sicknesses and I am hoping this is the end of it for at least a few months.

Friday, February 21, 2014

The Neurologist

So, I went to see a neurologist today and I've decided that I would like to go see one every day because he was so kind. In all seriousness he said that my recent bouts of pains were not neurologically related. He said that sometimes tests come back negative but at the end of the day if you're having pain your having pain. He seemed to really understand both sides of the story in that my Doctors don't want to give me plasma willy nilly but at the same time, I don't want to be in pain. He suggested that I sit with my doctors and come up with a plan for the next time I have unexpected pain for example, how many days will we let the pain continue before we infuse?
The neurologist then went on to say one of the nicest things anyone has ever said to me. He said that I seem like a very strong and very resilient person, he said that I didn't describe myself as a victim and that he was very impressed with me. 
When you are a full time patient you don't get a lot of things like that, I don't get promotions or huge pats on the back like that. 
I guess having someone say that to me is the equivalent of a normal person getting a good performance review which again doesn't happen to me a lot because most employers don't appreciate their employees being off sick often. 
I am really happy I went to the appointment and I am very happy that I don't have any underlying issues because I must say having Hemophilia is enough!

Wednesday, February 19, 2014

Recovery Time

So, I was on short term disability but my doctor has cleared me to go back to work so tomorrow I will return to normal life. Today it preparation I ran some errands, cooked supper and tidied up around the house. I have to say I am completely exhausted. My arms feel tired as I type this. 
Over the years I have noticed that the older I get the longer it takes for me to recover both mentally and physically. At the moment the pain is a lot better I am no longer on pain meds and I am almost 100% but mentally I feel so tired. All I want to do is lie down and watch TV. I guess all the stress and a pain meds and interrupted sleep adds up after a while.
I met with the clinic staff to discuss some of the problems I have been having and they have decided to send me to a neurologist/ pain specialist on Friday. 
I agree that it is very strange that I have such severe pain yet the scans reveal no bleed. 
But the fact that it improves almost immediately with plasma makes me think that it must of been some sort of bleed. 
Either way I will try my best to get back to normal and hopefully I can go at least a few months without having another bleed. 

I've attached a picture of Zane and I in the hospital in December 2013, January 2014 and February 2014, its been a rough few months! I don't know how I could do it without Zane. 

Saturday, February 15, 2014

Nobody knows you when you're down and out

So, this statement in my case is completely untrue I have lots and lots of wonderful friends and family in my life. But, sometimes when you are sick it feels like this. It feels like you are the only person in the world suffering and everyone else is just going on with their lives. That is very true to some extent when you are sick the world goes on without you and as much as you want everything to stop it doesn't and people still expect things of you like, when are you going back to work, what did you do all day. I smile and say next week but i really want to say are you kidding me? I don't even want to get up in the morning let alone go back to work. Maybe each person only has so much strength and courage at one time and I have to say at this moment my strength and courage is gone. It got all used up when I had to keep together when I stayed up for 48 hours straight in pain and when I had explain a million times to the emt, the nurses and the emergency doctor that I just need my plasma. Being in pain and having people not agree with you or refuse to help you is the worse thing I can imagine. The other worse thing is having to see the stress in your familys face when they come to visit you in the hospital or as they watch you being loaded up into an ambulance. 
The biggest secret about being sick is that you have to be positive and I hate it when people say that to me I want to smack them but its very true. Noone wants to hang around with someone who is constantly complaining no matter how justified that complaining may be. To you, the sickness is the most important thing in your life but to someone else its just another day. 

Wednesday, February 12, 2014

Standards of Care

So, Monday I went into the Hemophilia Clinic limping and in lots of pain. The Ultrasound came back clear so they sent me home. By Tuesday morning I was in so much pain that my father had to call an ambulance. I called the Hemophilia Clinic and they told me they did not have time to see me and I should go to Emergency. I've contacted lots of other patients and they said that they have never heard of that in all of their lives. So its come to my attention that my clinic is not treating me appropriately. Honestly out of all the terrible things that have been happening in the past few months this has been the hardest to deal with. I love my clinic so much and over the past few years its been so comforting to know that I have these people in my lives. But over the past few months they have been sending me home when I am in pain and its been causing me so much agony and stress. Honestly it is so traumatizing to be in that much pain. It was so bad I tried tylenol, percocet, codeine and hydromorph. Nothing took away the pain enough so that I could sleep so I just sat and watched tv for hours and hours looking at the clock waiting for the clinic to open. When I called them and they said go to emergency I felt so hopeless, it took everything in me to just make it 8 am.

We spent 9 hours in the emergency room. I had moprhine, maxiran and benedryl and I only started to feel a bit of relief after about my second unit of plasma. 

Today I am still in pain. My leg is still a bit sore, I am tired from not sleeping and my stomach is sore from all of the drugs I feel bad for all the stress I caused my Dad and Zane and I am hurt that my clinic isn't helping me. 

Monday, February 3, 2014

Worry wort

So, I don't know if other Hemophiliacs worry about these types of things but lately I've been starting to worry about the effects this wonderful disease has had on me over the years.
For example recently I've begun to wonder if I will have liver damage because of all the medication of taken over the years. In January alone I took more than 25 percocet pills. I don't take pain killers on a regular basis but over the course of 30 years I'm sure they all add up. I'm am starting to wonder if I would benefit from trying things like medical marijuana would help with pain management and not affect my liver. I know a lot of Hemophiliacs who use medical marijuana because over the years they have contracted Hepatitis C so they use it to avoid further liver damage.
Another thing I worry about is radiation. So far I have had many, CT scans and X rays to the point where if I ever do go into emergency the doctor always says I shouldn't get any more scans and looks at me like I am crazy. This is scary to me considering the doctor is only looking at my chart from the past 7 years.
Employment is something that is stressful also. To date, the longest job I've ever had was two years. I haven't had much success with creating a career for myself and I feel it is because of my Hemophilia. I have had employers hassle me about my illness to the point where I just quit myself. Its very frustrating I must say. I often feel stuck in a rut with not many options to get out.
And don't even get me started on how stressful it is on me to travel. I am just getting over my trip to Newfoundland that I took in November.
At least with all this worrying on my plate I will never be bored!

Sunday, February 2, 2014

The joys of having a Hemophiliac friend

So, I've been meeting a lot of new friends lately and since I thought I would write a little bit about the fun things you can expect when you are friends with me

1. I may cancel plans we have at the last minute. I don't do it to be hateful I just get aches and pains and sometimes have to cancel out of no where. Sometimes I honestly have something wrong with me medically sometimes I just freak myself out and think I have something wrong so I cancel.

2. Don't loan me anything unless you don't care about it getting destroyed or never seeing it again.  That has nothing to do with my Hemophilia I am just terrible with borrowing things. 

3. You can't be afraid of blood. I talk about blood and organs and bleeds and all sorts of gross stuff all the time so if you have a weak stomach I may not be the friend for you. 

4. You will become my nurse/doctor. I often as my friends for medical advice even if they have no background in Hemophilia or any medical background whatsoever. I appreciate their advice and like getting different opinions on things.

5. I will message you late at night. Often when I am having a bleed or in pain I like to talk to my friends to get if off my chest. I don't expect a response its just nice sometimes to text to take my mind of the pain. 

6. I love birthdays. I will always do something for you on your birthday. Over the years Ive been known to make crazy cakes, throw surprise parties and completely take over all the birthday planning even if we've only been friends for a short time.

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.