Friday, December 27, 2013

Christmas time in the city

So, Christmas time is over now our house is full of gifts and wrapping paper and left overs. I wish I could say I had a wonderful Christmas but again Hemophilia has gotten in the way. My nightmare leading up to Christmas really stayed with me even after I got better and I found it hard to just jump into regular every day life.
After spending 9 days in pain I felt isolated, exhausted and worn out in pretty much every way possible. The thing is no one else just went through what you went through so they don't understand how you are feeling. It sounds crazy but after you go through something like that you feel like you should win an award or something but you just have to pick yourself up, smile and move on to the next day. 
Sometimes its harder to pick up and move on than others.
It reminds me of one Christmas when all of my friends seemed to be interested in ice skating. I, of course could not go ice skating its hard on the ankles and I was advised not to skate.
I remember going up to my room and just screaming and crying in frustration. I was only about 7 or 8 at the time and I didn't understand what was going on all I knew was that I wanted to play with my friends and instead I was alone in my room by myself.
I feel like that little girl a lot. Every time there's something I cant do, every time I have to take a step back and deal with my illness instead of everyday life.



Monday, December 23, 2013

Merry Christmas to all!

So, I just wanted to take a minute to say Merry Christmas to all of my wonderful friends, family and readers! I really appreciate all of your help and support while i navigate life with this interesting disease!
I am praying that everyone has a safe, happy and healthy Christmas holiday.
I was going to type that I am so happy to not be in the hospital for Christmas but it is only December 23rd so I won't type that just yet. As you know things can change at any moment.
A really great website to check out and maybe think about giving as a Christmas gift is http://saveonelife.net/.
I'm off to enjoy Christmas! Good night!

Friday, December 20, 2013

On to the next one!

So, my nightmare is some what over I guess for the moment. I had a sit down meeting with my clinic to discuss this whole placebo foolishness and I think the bottom line is this. They are never going to think I have a bleed unless they see it in diagnostic imaging and I know after 30 years of having this that sometimes its not always clear. So I think we are always going to disagree on that front. Disagreeing is totally fine it happens and theres nothing we can do about it, my only concern is that in this situation I am the only one who suffers. Maybe suffer sounds dramatic but missing work and being in pain and not sleeping for 8 days is suffering. I just feel like it is unfair that someone else gets to decide whether or not they get treated. I feel like at the end of the day, no one knows how I feel better than me. I've been doing this for 30 years I feel like I know when I am bleeding and when I am not.
I find it frustrating to because I don't have a lot of support or resources when it comes to this because the population of factor 5 hemophiliacs is so small. Most Hemophiliacs just infuse whenever they want at home.
So because we are such a small group spread out all across the globe I feel like there isn't a lot of support or understanding even of what we go through.
I think the whole placebo thing really upset too because I have been called a liar so many times when it comes to my Hemophilia. For example I once had a doctor say to me, look we aren't giving you any drugs so you can just stop it. If i was just looking for drugs then making up severe hemophilia and getting more than 2000 blood transfusions must be the most elaborate ruse of all time!
I think a doctor not believing you or thinking that your making something up is one of the worse things that can happen.
I don't know what will come out of all this right now I feel discouraged, tired and a little bit grumpy.
I am praying that my next bleed will be a lot smoother! However, I some how feel like my troubles with hemophilia are far from over!
 

Tuesday, December 17, 2013

The nightmare before Christmas

So, theres no way to get my point across other than telling you the whole story so forgive me if this blog post seems a big long.

I travelled to Newfoundland about three weeks ago to help my Momma who is recovering from a hip replacement. Everything went well except the fact that she was in a ton of pain and while I was home I became her care giver. I was so happy to help but it took it took a lot out of me and upon arriving back in Calgary i noticed that I was in a lot of pain.

I flew in on Friday and went to my Hemophilia Treatment Centre on Monday morning. They said it was just muscle pain. I went back on Wednesday and asked to be treated with Fresh Frozen Plasma and they said no its just muscle. I called them on Friday because i was still in a lot of pain and they said no we will no infuse you so i went back in on Monday in excruciating pain and pretty much begged them to infuse me.

I am happy to report that I feel a lot better. I am no longer taking pain meds and I slept through the whole night comfortably.

I woke this morning to a call from one of the doctors from my clinic. She asked how I was doing and said that she thinks the plasma has a placebo affect on me.

I am completely hurt and baffled as to why a doctor who has little experience with a sever factor 5 Hemophiliac would make a statement like this?

I know that I should just ignore it and be happy that I am feeling well but these are the people I look to for help when I am sick. Now I find out they think I am making up the pain? it realy doesn't make any sense to me.

In my distress I've contacted every severe factor 5 Hemophiliac I know of which is about 6 different people they have all stated that they experiece almost immediate relief.  They have also stated that sometimes there is no rhyme or reason for their pain.

At the moment I feel helpless, I feel like down the road when I am in pain I will not get the help I need or if they do it will be after days of suffering and begging and pleading.

As for the placebo affect thing I take it very personally. I have a small handful of people that even have this stupid rare disease to talk to about this. Theres no real authority on severe factor 5 hemophilia. I am an authority on my own health and what I need but it turns out that isn't true. If I feel I am having a bleed I have to convince someone else of that and that is not fair.

30 years of living with this disease and I feel like i don't even get a say on how I am treated. Not only that but theres not one thing I can do about it. The only thing we have been discussing is potentially moving to another clinic but I suspect it will just be a different set of problems.

I hate how having Hemophilia always has to be such a fight. I fight with people to not treat me differently because of my disease, I fight with work places to not fire me because of my frequent sick days and now I feel like I have to fight for treatment.

Every time I feel like ive overcome an obstacles with this diesase a new one presents itself. The only thing that makes me feel better is that the next person who is born with severe factor 5 hemophilia will atleast have a very detailed account of what its like to live with this disease!




 

Sunday, November 24, 2013

Catherine

So, today I found out that we lost a wonderful lady in our Hemophilia Community. I was looking for an obituary for a co worker who recently passed when I stumbled upon my dear friend Catherines. It is a very hard way to find out that someone you loved has died. I first met Catherine when I got involved with the Hemophilia Society about 5 or 6 years ago. We met at a Women and Bleeding Disorders conference and really got to learn a lot about each other. Over the years we became good friends and she became a mentor and source of inspiration for me. I remember Catherine telling me about two years ago at the annual Christmas party that she had been diagnosed with lung cancer. I was shocked and scared for her but she sounded great and so positive about the whole thing. She said they were gonna treat it and that she wasn't ready to go and before I knew it she was comforting me. I remember thinking why would someone as wonderful as Catherine have to live with Hemophilia her whole life and now be diagnosed with Cancer? It didn't seem fair. After a few months her and I began meeting every couple of weeks and discussed writing her memoirs. Catherine had such a full and beautiful life that there just isn't any way to capture it in one blog post, book or obituary.
She has such a huge personality and she always looked fabulous. I remember visiting her in the hospital one time and even then she looked well put together. She was lying in the hospital bed with a beautiful outfit on and her feet up reading something interesting I'm sure. I asked if she would like me to rub her feet for her and we sat and laughed and chatted for a long time.
I feel sad that someone as wonderful as that is gone. I feel sad that I she may never know how many lives she has touched over the years not only in her work as a professional counselor but her many years of volunteer work with the Canandian Hemophilia Society.
 She means a lot of different things to different people. All I can say is that to me she was hope, she was inspiration that no matter what happens in life you can come out on top.

For anyone reading this who knew Catherine you can write condolences to her family here http://www.mhfh.com/hordos-catherine-ann-lilian/



Sunday, November 3, 2013

Mother and Child Reunion

So, in about three weeks my Mom will be getting a hip replacement. Three years ago she broke her hip and it has been a huge source of pain for her ever since.  I wish I could be with her for longer but as of right now it looks like I will only be able to get away for about a week to 8 days or so. I am not use to my mom being sick and in the hospital. With her and I it is usually the other way around. I hate thinking of my momma having to face this by herself. She is blessed to have lots of family and friends around her but I know that when it comes to times like this you want the person you love by your side and for my mom that is Charlie. Charlie passed away three and a half years ago and I know that for me when I am sick I want Zane my my side.
It's so upsetting to see your parents sick. Thank god I haven't been in this position very often because it is absolutely heartbreaking. If I could take the sick time in moms place I certainly would. The other hard part about this whole situation is my own abilities. I have great coping skills I think when it comes to the emotional aspect of someone being sick but I am severely lacking in my physical abilities to help my mom. For example because of my Hemophilia I can't raelly be lifting her in an out of bed or helping her walk around. Its very fustrating to me because I would love to be the type of child that just comes in and helps their parents out when they need it but I just can't. I think it is espcially hard for me because my mom was my health care provider for so many years. For 22 years whenever I got sick mom had to drop everything she was doing and help me. No matter what was going on she was there from holding gauze in my mouth when I lost a tooth to putting hot towels on my legs when I would have an ankle bleed, she was there. I now feel like its my turn to help her out but instead all I have to offer is a few days visit and some well wishes. It seems like a hollow jesture for a mom I feel like deserves much much more.

 

 
 

Thursday, October 24, 2013

hip

So, my hip has been bothering me for the lat few days. I think its because I have been trying to exercise more and its probably just a bit of inflammation. Of course, with Hemophilia you always have to consider the worst case scenario so it could also be a hip bleed which I have had a few of in my lifetime and it is the worse joint to bleed into in my opinion. I will head out to the Hemophilia clinic tomorrow and get it chanced out but in the meantime I am a bit worried about it. I hate having to go into the hospital and it seems like the longer I have been away the harded it is to go in and admit defeat. Its funny how a slight bit of pain can make you realize whats really important for example as soon as I started to feel pain all the other things in my life started to become less important like looking for a Halloween costume and the fact that I haven't gotten my wedding pictures back yet.
Maybe its just arthritis which is still a bit of a scary thought but a bit better than having a bleed. Either way I will spend the night watching tv and complaining to Zane. Hopefully things will look better in the AM.

Sunday, October 20, 2013

ah to be young and foolish

So, today is my sister in laws 19th birthday. To celebrate, she came to visit us in Calgary and we had a wonderful birthday party for her. It's so nice having family around I have to say and I think my sister in law had a lot of fun which is the main thing! When I first met my sisters in law they were only 10 and 12 years old and now they have grown up in to beautiful, kinds women. I am very happy to have them as my sisters and very grateful that we got to spend a birthday with them. After the birthday party at our house the birthday girl went down town to celebrate with her friends and it made me realize the affect Hemophilia has on the aging process. So far I am only 30 years old I don't know about all of the ins and outs of Hemophilia and aging but I feel like I have always acted older than my age. I think having a chronic illness forces you to do that to some degree. You can never be completely care free, in the back of your mind you are always thinking, I better be careful. I know for me I have been like this since a very young age and as I have mentioned before I am getting more cautious as I get older. I am not interested in staying out too late or wearing myself out. I guess I am just older and wiser. My only fear is that I will one day be too afraid to leave my own house so I do have to push myself to try new things every now and then. Going to North Carolina for me was a huge step and I've promised my sister in law that we would all go to Vegas when she turns 21! After all life is all about celebrating!


 

Friday, October 18, 2013

Inspiring

So, I recently learned about a very courageous woman Heather Von St. James. If you have a minute please check out her website it is fantastic. You can visit it here http://www.mesothelioma.com/heather/.

I learned about Heather through her husband Cameron. That's the funny thing about living with a chronic illness. You aren't the only one affected by it. Once you have a chronic illness in your life everyone you love is concerned and it is now their fight as well. That is the heartbreaking part about it. You can't isolate and experience it all to yourself. If I could do that I certainly would. If I could take away the pain and worry it has caused my friends and family over the years I would but we know there is no way to do this. With that being said I don't think I could survive this illness if it wasn't for the love and support of my family and friends.

That is part of the reason why I started this blog in the first place. I think it is so important for people to share their stories and it is such a source of hope and encouragement to read about people who have overcome huge obstacles and live to tell about it. It isn't always easy being open and honest about your disease. It's hard always feeling like the odd man out or that their is always something different about you but if it gives hope to just one person then I think its worth it.

I hope you take a minute to read about a very brave person named Heather!

 

Sunday, October 13, 2013

Happy Thanksgiving!

So, this weekend is one of my favorite weekends of the year. Thanksgiving is such a great holiday because there is little work involved, you just get together with your friends and family and eat. This year we are celebrating with friends and I have the say over the years a lot of our friends have turned into family. A lot of people take this weekend to reflect on all the things they are thankful for and there is not enough time for me to write all of the things I am thankful for but the things that are at the top of my list at the moment are: our wonderful friends and family, our health (knock on wood) and the upcoming trips we have planned together. As I said before I was recently in the US and it really made me realize how lucky I am to live in Canada. Don't get me wrong, I think the us is an awesome place but for someone with Hemophilia it can be a very expensive place. I pray everyone is having a safe and happy thanksgiving weekend!

 

Friday, October 11, 2013

US adventures

So, I was very brave last month and took my first trip outside of Canada! I am very happy to report that it was a success. I was very nervous about going because of the health care system in the US. For example, one blood transfusion is about 40,000$ so something with Hemophilia can ring up a big tab in a hurry.
Armed with my doctors notes, my factor first card, two insurance polices, Zane and I ventured off to Raleigh North Carolina.
I have to say it is such a beautiful place.  The weather was great, the good was delicious and the people were so warm and friendly.
While we were in Raleigh I got to meet my darling friend who also has severe factor 5 deficiency. We have been talking since I was about 12 years old so getting to meet her in person after all these years was very exiting for me.  She is about 30 yeas old than me too and it was nice to see that she still has full range of motion in all of her joints.
I know for me the thought of traveling to another country has been scary just because of the medical problems it can cause but I think planning and contacting the Hemophilia Treatment Centres on both ends is a good idea as well.
I don't think I will be off to any exotic places any time soon but i will definitely be heading back to North Carolina soon!

 

Friday, September 13, 2013

Travel woes

The joys of having a rare condition just do not stop. Today I looked into my insurance with my work and they do not cover pre existing conditions. I know that it is not the end of the world and I will simply buy it some place else but I have to say I am so sick of having to take extra steps and precautions for every move I make. The world is really not set up for anyone with any sort of special need or anything out of the ordinary. I try my best to not get discouraged but sometimes I just want to scream. I know I am not the only one who needs special accommodations. What do these people do? How do they get through life? I know I find it hard enough I can't imagine having any other obstacles. I think when you have a chronic illness it is important to keep a positive attitude, but sometimes I don't want to have a positive attitude I want to take all the obstacles in my life and kick them over! But as anyone with a chronic illness will know, you can't fight it. You can play hopscotch with your friends all afternoon and try to pretend you're not in pain but eventually whether you like it or not you have to give in and go to the hospital. I use to have must more courage when I was a kid. Now I've gotten really good at convincing myself that I'm ok with missing out on things. For example "I can't wait to go to that party on Friday." "I'm too sick to go to the party." "I didn't want to go to the party anyway." It might not be true but honestly what are you going to do about it? There is no point in getting upset about it. All you can do it smile, make yourself some popcorn, turn on a movie and get some rest!

Thursday, September 12, 2013

Happy Birthday to Zane

So, today is my darling husband, Zane turns 28. I love when his birthday comes around. For the past three years we've been going to the same place and I have to say it is so nice to be surrounded by such great friends. Its funny because 9 years ago Zane and I bet on his 19th birthday. We were attending the same university and some of his room mates had invited us to their apartment to celebrate. As it turned out his birthday fell on a weekday and us girls wanted to start the school year off on the right track so we decided not to go to the party. I did however stop at the liquor store and buy him some beer just to say hello and thanks for inviting us. I ran up to his apt for about 5 minutes and said hello. He says that that was the moment he fell in love with me. I don't know if that is true but over the years I have come to really appreciate each birthday we get to spend together. Some of them I am in the hospital, some of them we are having a wonderful time but the main thing is we are always together. This is the first Birthday Zane has had since we have been married and I pray we get to have many many more together.


Wednesday, September 11, 2013

Fender bender

So I got in a small car accident last week. Ironically I was on my way to a doctors appointment at the hospital. I turned too sharply and scraped our passenger side door on a cement block wall thing. (Please feel free to laugh at my stupidity.) Anyways I suppose the main thing is that I am perfectly fine and that no one was hurt-not even the cement wall. I was very upset though because as I have come to learn anything to do with vehicle repair is very expensive.
The thing about car accidents is they are just that a complete accident and no amount of crying and eating chips can change that.
I am very happy to report that I am not hurt because as you can imagine a car accident for anyone with a bleeding disorder is bad news.
In case of emergency I always carry my factor first card in my wallet which contains information about my disease and contact information for my doctor. I also wear at all times my medic alert bracelet. I also have a contact in my phone called ICE which stands for in case of emergency it has all of my immediate family members phone numbers in case someone needs to get a hold of them. I really recommend everyone doing this but even more so for people with bleeding disorders. Oddly enough I was at another doctors appointment today and I had to return to the very same parking lot where I had my accident while I was walking to my car, I saw a lady back right into another car. The put her car in drive and took off. She didn't look for damage or anything. I guess the moral of the story is drive as safely as you can and put in as many safety precautions as possible!

Tuesday, September 10, 2013

University of Calgary

So, I spoke at the University of Calgary on Friday. This had been my third time doing this talk and I have to say I really enjoy it. I try and write a new speech every time and then the students ask me questions for about 40 minutes. The questions seem to range from everything to what a blood test on someone with factor 5 would look like to how things like a manicure or pedicure would affect me. As you must know I love talking about myself but I also like learning new things. During this talk we talked about the fact how other people with factor 5 deficiency even if they have less than 1 % they don't always have internal muscle and joint bleeds like me. For example there are two people I know with severe factor 5 deficiency who have only been treated a handful of times in their whole lives. This really baffles me because the longest I have ever been in my whole life without getting a blood transfusion as been one year. It baffles me and also makes me jealous. Not only do a have rare and strange disease but I have one of the worse forms of it! Oh well you gotta play the cards your dealt I suppose so while I do not love having this disease I am trying to make the best of it!

 

Tuesday, August 13, 2013

My big fat newfie wedding


 
 
So, I got married. I am now officially Ryanne McIsaac. I am a whole new person and we are now our own little family. The wedding went in such a blur that I often look at the pictures to verify it really happened. Apparently it did and I've attached a picture so you can see for yourself. When people ask me how the wedding went I have different answers depending on whos doing the asking. I've noticed that for the most part people don't want to hear about the bad stuff. No one wants to know that I spent more than a year planning every detail and when I sat down to dinner all I could see was that they left these old lanterns up from someone elses wedding. I was sad an disappointed that the speaker system was literally from 1975 and you couldn't hear a lot of the speeches. I was mad that the cake was hard as a rock and that the soft subtle bouquet I requested turned out bright and intrusive. But, I've noticed that no one wants to hear that. They glaze over and say oh I'm sure it was fine. So I won't tell you about any of that. I will just tell you about the magic parts.
 
 
The mass at our wedding was my most favorite part. Zane and I sat up at the front and just enjoyed the ceremony. There were a few tears and a few laughs and after an hour we were married. We walked out to a room of smiley happy friends and family.
As if that wasn't enough to warm your heart, we then went to the reception. The food was yummy and Zane's mom and Dad had the most wonderful things to say about me. My father and members of our bridal party gave beautiful speeches as well. But I have to say Zane stole the show with his heartfelt and sincere speech. I wanted to say so many things and break down in tears but I knew if I started I would never stop so I remained pretty stoic for the entire day and waited until most of the wine was gone before I started to cry (like any respectable bride would do.)
I spent the night dancing and chatting with friends and family overall it was a wonderful night.
When people talk about having a big wedding I often say Don't Have a Big Wedding!! No one needs the stress of seating charts, programs and decorating. With that being said there is no other time in your life where you will get to dance to blurred lines with your husband, your best childhood friend and your mother. There is no other chance you will get to have a picture of your grandmother with funny sunglasses and a cowboy hat. There is no other time in your life where you will be in a room filled with everyone you love just laughing and having a good time and honestly it doesn't get any better than that.
 
 

Sunday, July 7, 2013

Bachelorette

So, last night my amazing friends had a bachelorette party for me. It was so wonderful. They picked up in a limo and when I opened the door all of my friends were there drinking champagne. We laughed and danced until early in the morning. We are heading home for our wedding in just 6 days and I still can't believe it. I feel like there is still so much I have to take care of before we leave. One of these errands including picking up some wedding presents from the store. On my way home the traffic came to a stop. We continued at a snails pace and as I got closer I saw that there we about 30 cars pulled over on the side of the road. Everyone was out of their cars talking and looking up a head. As I got closer I saw a man lying on the road a pool of blood spread out around him and one man on top of him giving CPR.  I couldn't help but stare and as I got closer to my exit I saw his family members crying on the side of the road. So much grief and pain on their faces. Later on in the day I checked the news online to find out that the man passed away. He lost control of his motorcycle and was thrown into oncoming traffic. The article mentioned nothing about who the man was, he was simply an accident victim not a real live human being with feelings and a family. The strangest part was while this was going on a car reading "just married" passed by me and I thought how funny that the very same day can be the beginning and the end for different people. That's the thing about life, You never know what is going to happen from one day to the next. All you can do is wake up every day and do your best. I think the worst part about having Hemophilia is the fear that comes with it. Yes going to the hospital every now and then is unpleasant and its hard and I hate it, but its the every day fear that I find the worst. Even last night on my bachelorette in the back of my mind I thought, well I can't dance too much I better sit down. Its the every day little things that Hemophilia takes away from me that I find the hardest. Everyone says you should live life to the fullest but sometimes you gotta go to bed early and take your vitamins. I don't know much about the man who I saw die on the side of the road today but I pray he had a good life and that he lived life to the fullest!

Thursday, May 23, 2013

Vote for me please!

So, I've entered to win this contest. I could win 5,000$ and I figure with a wedding coming up I could certainly use the funds!

Please vote for me if you get a chance!

https://apps.facebook.com/breakpause/contests/323695/voteable_entries/67711980

Saturday, May 18, 2013

Pain Pain go away

So, I'm not feeling 100% at the moment. I went to bed as normal and now I am up in pain unable to sleep. I don't know what normal people think when they get sick, but for me I think of all the terrible things it could be. Right off the bat I think, it must be a ruptured ovary, gallstone attack, or infection. I never think just a stomach ache. The first thing I do when I get sick is to search for my painkillers, I don't take them right away but I like to know they are there if the pain spikes. The next thing I do is run a hot bath. I make it as hot as I can possible stand. After that I lie on the couch, for some reason when I am sick the last place I want to be is in bed. When I am in bed all I can think about is the pain and I hate twisting and turning in the dark. After a few episodes of Murdoch mysteries I usually try to head back to bed. Perhaps I over analyze things or worry too much but because I've had so many terrible experiences in the past I don't think I will ever be able to think of a stomach ache as just a stomach ache and I don't think I will ever be more than a few feet away from pain killers. Like I said I only take them when I absolutely need them but I find it comforting know they are there.
I sometimes worry about the effects of all the pain medication of taken over the years. I know its terrible for your liver among other things I'm sure. There have been times though that I have been in such pain that I contemplated jumping out a window so I guess there's no easy solution. Nevertheless I am off to try and get some sleep.

Thursday, May 16, 2013

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. 

Wednesday, April 17, 2013

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!
 

Monday, March 25, 2013

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.






 

Wednesday, February 13, 2013

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.

 

Tuesday, January 15, 2013

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!
 

Saturday, January 5, 2013

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!

 

Friday, January 4, 2013

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.