Saturday, December 18, 2010

Christmas Blood Transfusion

So, I made it home to Newfoundland safe and sound. I was delayed all the way down and my luggage didn't show up until two days later but I made it! However, I guess all the travelling and stress did get to me because today I was in so much pain I had to go in to the hospital for a blood transfusion. I've been having pain in my hip for the past few days now so I decided to go in and get it checked out. They are use to seeing me at the Stephenville hospital so it was only about 4 hours and I had my 4 units of fresh frozen plasma and some pain medication. I am home resting now and praying that I will only need those four units and not have to go in for more. I kept my IV in just in case but I hope I will not have to use it.
I feel much more comfortable with my doctors and nurses in Calgary but I have to say the nurses here in Stephenville are the nicest people in the world. Hopefully I can spend the rest of my trip eating chocolate and opening gifts! We'll see how it goes in the morning!

Thursday, December 9, 2010

Christmas Countdown

So, yesterday I went to the dentist to get a crown put it, it seemed to go off without a hitch so I am happy about that! I also got to spend the night at my dads house, we decorated the tree had a delicious supper and Dad gave me a GPS system for my car which I am so excited about because I am the worst at finding my way around the city!
There are only four days left until I go to Newfoundland for Christmas. I am absolutely positively so excited but at the same time I am very nervous, I really don't want to end up in the hospital especially in Stephenville because I don't have my Hematology team there.
I am eating healthy, taking lots of vitamins and getting lots of rest in an effort to keep myself healthy! In the meantime I am running around trying to get all of my shopping done. No matter how much I buy I still feel like I need to do more shopping! I don't care what I get for Christmas as long as I stay healthy until at least January 7th!

Wednesday, December 1, 2010

World AIDS Day

So, today is world AIDS day! I think for most people it might not mean anything. For those in the Hemophilia Community world AIDS day brings up horrible memories. For me, I remember a family I met when I was living in Halifax, NS. The family that I had the pleasure of meeting had two sons that had severe factor 8 hemophilia. Both sons contracted the HIV virus through the tainted blood in the 1980's. The family was so devastated that they told everyone the boys died from severe bleeds when in fact it was AIDS. They didn't want people to know the truth. Sadly, for a lot of Hemophiliac families this story is very similar to their own. You see in the 1980's almost an entire generation of Hemophiliacs were injected with tainted products containing the HIV and Hepatitis C virus. World AIDS day makes me think of all the people we've lost to this horrible disease and it reminds me that the Hemophilia community is still at risk. Until all Hemophiliacs have a recombinant factor that contains no human blood product what so ever we are still at risk.

Sunday, November 28, 2010

Hemophilia Christmas Party!

So, last night was the Southern Alberta Region of the Canadian Hemophilia Society Christmas party! It went really well! We had one of the best turn outs yet! The food was delicious and there was face painting and a visit from Santa! The highlight for me was being elected to my new position on the board. I am now the President! I am very excited and I will be sharing the role with another volunteer as well as three other awesome members of the executive. I have a few ideas for this upcoming year but my main goal is to ensure that things continue to run as smoothly as they have been and try to do as much programming as we can. We also do not have a lottery license so one of my goals is to get our lottery license so we can fundraise. So I am thinking with my new role I need to be more accessible so I must get a Apple iPod touch 8 GB (4th Generation) NEWEST MODEL. But since my position is a volunteer position I might just have to stick with the old cell phone I already have!

Monday, November 22, 2010

All I want for Christmas is my two front teeth!

So, I went to the dentist today, I had to get fitted for a crown. A crown is a little tooth piece they put over the damaged tooth. I must say it wasn't too bad at all! It only took about an hour and a half and there was no bleeding at all so I was very happy about that.
The bad part was having to brave the bad weather to go to the appointment. Luckily my Dad picked me up and we ended up having a nice day together! Speaking of the weather historically, I tend to have more health problems in the winter months. Almost all of my big bleeding episodes have occurred in the winter. I don't know exactly why but I think it is because the winter is harder on your body. Either way, the winter is my most hated time of the year. I love the way the snow looks and I love Christmas but it's definitely not a good time of year for me. I am hoping however that this year will be a good Christmas! I am planning on getting my momma a Karaoke Machine Singing Machine ISM1010 Home Karaoke System. She loves singing and so do I, so I think it will be fun for everyone well maybe not our family and friends because they will have to listen to us but at least it will be fun for Mom and I!

Thursday, November 18, 2010

Sissies!


So, Zane and I are getting into the Christmas spirit by putting up our tree this weekend! I always love putting up the tree while listening to cheesy Christmas music is it bad that I really want to buy O Holy Night (CD/DVD)this year?
Anyways, I've been thinking a lot about the conference I just went to in Vancouver and I thought about how almost all of the participants were paired up for example, sisters, brothers, mothers and daughters. But my whole life I have never had that! Everyone in my whole entire family is pretty much healthy so I've never had someone in my family with Hemophilia. Until I met Tammy. When I was about 12 years old my mom came home and told me that we had another sister who turned out to be a carrier of Factor 5 deficiency. I was blessed to have one older sister, Kelli but when I found out we had another sister I was ecstatic! The more I get to know Tammy to more I find out how she is so much like us! The last time she was in Stephenville was for Charlie's funeral it was an awful experience but having Tammy there felt right. It felt like it should have always been that way, the three of us putting on our make up and getting ready in the bathroom, all of us having meals together and laughing and joking.
Sometimes I get sad to think about all the years I didn't get to spend with her but in the end I feel like I am so glad to have her in my life now!

Wednesday, November 17, 2010

Christmas Past


So, with Christmas coming up I've been counting down the days until I leave for Newfoundland! Only 26 days! I've got all of my Christmas cards filled out and I've decided to get Zane a Kindle Wireless Reading Device, Wi-Fi, 6" Display, Graphite - Latest Generation. This will be our first trip to Newfoundland at Christmas time in four years. The last Christmas we went home we got as far as the Edmonton airport and I felt like I was getting a urinary tract infection. I remember calling home and Charlie answered. I cried and cried and he said it's ok darling, it will be ok. The pain was excruciating and by the time I got to Deer Lake, NL I was besides myself in pain. Mom took me to the hospital and after taking a few antibiotics I started to feel better. A few days later an cyst on my ovary ruptured and began to bleed into my abdomen. Again I was in so much pain and the doctors would not give me any blood or pain medication. I was taken by ambulance to Corner Brook where they talked about doing surgery and all sorts of foolishness. Anyways to make a long story short, I was released from the hospital on Christmas eve and was told to take it easy. I remember Christmas morning sitting in a pile of wrapping paper and gifts thinking, this is the worst Christmas ever, I was exhausted, dehydrated and on top of it I had the worst flu I ever had in my life. But, at least we all together, our family dog Jessie was sniffing around all the gifts and Charlie was sitting in his big arm chair smiling. I never thought I would say this but I would give anything to have that Christmas back again. This year I am hoping to be healthy but I will never have Jessie and Charlie back again. I love Christmas and I am really looking forward to it but I know it's going to be a tough one!

Monday, November 15, 2010

False Alarm

So, after spending Friday night and Saturday day in bed my leg started to feel a lot better. I don't think anyone should ever do what I did, but I decided to suck it up and I went to the Christmas party with my friends. It was a beautiful party, they had an acapella group singing when we walked in, a DJ a live band and an acrobatic show. The food was absolutely delicious and Zane and I ended up having a really nice night! Had a woken up this morning in even worse pain I would not be singing the same tune but I woke up today feeling fine so I am really glad I went. Zane and I don't get a chance to get dressed up and go out very often so I am glad we went out. With that being said, I think that if you ever suspect you are having a bleed you should go to the hospital immediately you should never wait. Especially if you think it could be a hip bleed because the hip is such a large area you could bleed  into and end up in big trouble. Now that that scare is over I am moving on to Christmas!  I have been watching The Original Christmas Classics (Rudolph the Red-Nosed Reindeer/Santa Claus Is Comin' to Town/Frosty the Snowman/Frosty Returns/Mr. Magoo's Christmas Carol/Little Drummer Boy/Cricket on the Hearth) to get into the Christmas spirit and I am counting down until I go to Newfoundland, only four more weeks! Thank you all for your support and concern I don't know what I would do without all of your followers/friends!

Friday, November 12, 2010

Bleed!?

So, I went to work today as usual and when I got home I checked my blog and I was very happy to see that I now have 55 followers! Anyways, after I checked my blog I stood up and I had a shooting pain in my hip down to my knee. It just came on all of a sudden and now I am walking with a limp and I am starting to think it could be a bleed. I`m not 100% sure if it is a bleed so I am just resting tonight and if it is still this sore tomorrow then I will have to go to the hospital. For people who have a recombinant factor such as Factor 7,8 and 9 Hemophiliacs if they think they are having a bleed they infuse right away. However, with factor 5 my only treatment is fresh frozen plasma which means I would have to go to the emergency room, wait around for hours, see a doctor, get a ct scan, wait for the results, then get a transfusion which takes an additional 8 hours. So you can see why I am a bit hesitant to go in.
I also don`t want to think it`s a bleed because we are suppose to go to a Christmas party tomorrow but bleeds don`t work on a schedule! I`m praying it`s a false alarm!
Luckily, Zane is very understanding so we are just taking it easy and see how things work out in the morning. So I`m going to sit back and relax and enjoy my movie night currently we are watching Scott Pilgrim vs. the World (Two-Disc Blu-ray/DVD Combo + Digital Copy).
Wish me luck!

Wednesday, November 10, 2010

50 Followers!

So, Today I woke up and came out and checked my blog site like I do every morning! But today I was so happy to find that I had 50 followers! I started this blog in February with only one follower (me) so I am very happy to see that there are 50 people who are taking an interest in my blog! As if that wasn't exciting enough I came home from work to find a bouquet of beautiful yellow lilies and eucalyptus leaves. Zane is always doing thoughtful things like that but it really meant a lot to me. He is always supportive and helpful and he has been giving me so much encouragement ever since we've been together. A lot of people have said to me I don't know how you go through life with a positive attitude but when I get to spend every day with someone like Zane it certainly makes things a lot easier!

Tuesday, November 9, 2010

Blood from Skin?

So, I've been reading some interesting articles lately about how skin has been turned into blood. I don't have all the facts, but from what I have read at cbc.ca, this is quite the medical miracle. If this process of turning skin into blood is approved then it is reasonable to believe that there will never be a blood shortage. Also, if you require a blood transfusion there is always a risk of having a reaction. In my life I have had several reactions including hives, anaphylaxis and a seizure. I am thinking that if one could get blood from their own skin then it would be reduce the risk of reaction as well as reduce the risk of contracting any blood born pathogens. My question is if my blood doesn't have factor 5 then would the blood produced from my skin contain factor 5? If so that would be great news for me! Still it's hard for me to believe that in the last 75 years there has been no progress at all in the treatment of Factor 5. The lady I met at the conference last week has been taking fresh frozen plasma to treat bleeds and now 75 years later I am still using the exact same treatment. I am not a scientist but from what I see there has been progress in so many diseases which I think is great, but it makes me sad to think that the only reason there has been no advances for my disease is because there is no market for it. That's the only reason, it's not because science hasn't advanced it's simply because there isn't enough money in it! I feel like I am worth the millions of dollars it would take to develop a better treament for Hemophilia Factor 5.

Monday, November 8, 2010

Home again Home again jiggety jig


So, I am home safe and sound from the Rare Blood and Bleeding Disorders conference in Vancouver. I must say I had a wonderful time! Vancouver is just beautiful and the conference was very informative. The highlight of the weekend for me was spending time with TWO factor 5 Hemophiliacs. One was severe and one was moderate but they both were in their 70's and had so much information and wisdom for me.
Any free time we had during the conference I spent getting a complete medical history of them. I felt that we had such a great connection and it was so encouraging for me to see two ladies, just like me make it to 70 years of age!
The focus of the conference was rare bleeding disorders through the life span so we had three hematologists speak on the early years, the reproductive years and aging.
Of course I had an opportunity to speak about my experiences and I realized that I am a much better writer than I am public speaker but I think i got my point across!
I also met 6 other people who live in Calgary so I have big plans for them to get involved with the society.
When you spend your whole life feeling different and like no one understands you and then you finally get to spend a whole weekend with people just like you, it's an amazing feeling.

Thursday, November 4, 2010

It's conference time!

So, tomorrow I am off to Vancouver for a Rare Blood and Bleeding Disorders conference! I am really looking forward to it because there will be two factor 5 ladies there who are older and wiser than me. I am really looking forward to talking to them and asking them a million questions! I am also excited because I get to speak at the conference. I am speaking during a panel discussion that deals with Hemophilia through the lifespan and I will be giving the perspective of a young woman. I am much more at ease about travelling this time because my flight is only an hour and there will be Hematologist and Hemophilia nurses there for the whole weekend. Hopefully I will be healthy for the whole weekend and come back with some answers to my questions! Wish me luck!

Wednesday, November 3, 2010

Weighting


So, this is my most hated subject to discuss but I have to bring it up. At the moment I am overweight. All of my life I have never been bony or anything like that but ever since about two years ago I have been gradually gaining weight. It all started when I had a really bad bleed in my hip. I was out on steroids and bed rest which was a recipe for disaster. Once I was off the steroids I had to stay on bed rest and it took me a long time to recover. Anyways to make a long story short I have more weight on now than I would like! I have always felt like I could be skinner and over the years I have tried millions of crazy diets; Atkins, the curves diet, the low fat diet and this crazy soup diet where you only ate soup and bananas or something like that. Needless to say they never worked and here I am not feeling great about myself and fustrated!

This time around I've decided to do it properly so I'm working with a natural health practitioner and trying to loose weight the smart way! We'll see how it goes. In other news I've been following this great blog http://hemohijinks.com/. It deals with overcoming obstacles while still enjoying the things you love! I love it I must say! Check it out and while you're at it tell me some of your health habits I can adopt!

Monday, November 1, 2010

Style and Hemophilia

So, in my opinion it it's difficult to be stylish and a Hemophiliac. For example high heels. I love the way look and I love wearing them however, they aren't the best things to be wearing when you have a bleeding disorder. I didn't get my first pair of high heels until my first year of University. My second year, I got more courage and bought an even high pair of heels. However I attend Mount Saint Vincent University and to get to my dorm room I had to walk up a huge steep hill. Every weekend when we would get home from the bar we would begin the trek up the hill. After a night of dancing and standing in high heels I would resort to taking off my shoes and walking bare foot all the way. Now I am older and wiser so I only wear flat shoes. Another fashionable thing I always wanted to wear was earrings! When I was old enough to get my ears pierced I was told that it was a bad idea so I was stuck with magnetic, clip on and stick on earrings. They we never very fashionable, hard to find and really uncomfortable. However, today while shopping and the Chinook mall I discovered this clip on earrings that allow you to put any regular earring on! Very revolutionary for me!
I feel like I make a good compromise between what's best for me and what looks good.

Sunday, October 31, 2010

Happy Halloween

So, I love Halloween! Over the years I have spent every holiday in the hospital, my birthday, Christmas, New Years Eve, Saint Valentine's Day and Halloween! but never the less I love them! This year I dressed up as a cat! I am really not great at thinking of Halloween costumes so I think this has been about oh I dunno, the 7th time I dressed up as a Cat. Speaking of Halloween and scary things, I have been scared to take the latest medication I have been prescribed. A while ago I blogged about my ordeal with my gallbladder. Well the medication the specialist gave me is called Ursodiol. It's used to break up gallstones without surgery! I was so excited about it but since I've been reading the side effects I haven't have the courage to even take them. Some of the side effects include: nausea, head ache, dizziness, runny nose, sore throat, joint pain and hair loss. Believe it or not I wasn't too scared until I read HAIR LOSS. I know that makes me sound like the most vain person in the world but there are some side effects that really bother me. I am currently working with a natural medicine specialist and she says that she can get rid of my gallstones by taking natural supplements so at the moment i am thinking that is my best bet. On the other hand I do need to get rid of these gallstones as soon as possible. by having them I could have an attack at anytime and although it is very rare an attack can be fatal. Also by keeping them I am horrified at the thought of having to get them surgically removed. Either way, all of my options involve some risk but I guess that is just part of Hemophilia life!

Monday, October 25, 2010

Bad Blood

So, a few weeks ago I watched the Bad Blood Documentary http://badblooddocumentary.com .
It was the most terrifying thing I have ever saw. The directory Marilyn Ness did a wonderful job of getting you emotionally connected to various families who start off the film smiling in family photos. You are then told about the pain they have had to endure throughout the course of their lives, massive bleeds, huge swollen joints. Things start looking up when the documentary describes how factor replacement therapy came into place and now hemophiliacs have access to treatment when ever, where ever. It was thought for some time that it was a miracle cure. However, the medicine that was suppose to make them better turned out to contain the Hepatitis C and HIV virus. This part of the film alone is heartbreaking to see. Strong young men turned into feeble sick people. But that's not even the worse part. The fact that the drug companies, government regulators and some doctors knew, and still administered the products to patients is infuriating. I was in complete shock watching this film and angry for weeks. It took me until today to calm down enough so I could even write this blog about it!
You see I am one of the lucky ones. I was born in 1983 and began getting frequent blood transfusion ever since then. The Canadian blood supply was tainted between 1980 and 1990. So the fact that I have no contracted one of these virus if not both is a complete miracle.
One of the main points I feel the film was trying to make is that THIS WILL HAPPEN AGAIN! If we do not monitor the blood supply and if we allow people to value money over human lives then we will find ourselves in this same boat again.
This may seem like a Hemophilia related issue but it is not. Many people use the blood system throughout their lives and it is up to all of us to ensure it is safe for all.
To understand the impact of this issue watch the Bad Blood Documentary.

Sunday, October 24, 2010

Painkillers

So, I've been asked a few questions lately on http://twitter.com ( you can follow me @RyanneSiobhain) about painkillers. Good old painkillers.
Sadly, being a Hemophiliac has caused me to need many, many painkillers over the years. My favourite is percocet. Morphine is stronger technically, but I like percocet because it doesn't make me nauseated like morphine, codeine, Demerol and dilaudid.
However, not all pain is created equal. For example, when I had a chest bleed I found that over the counter robaxacet worked better then morphine.
Sometimes, ice, heat and rest can also help.
There are also going to be times when pain killers just won't work. About three years ago I had an iliopsoas bleed. It was the most excruciating pain I have ever felt. A CT scan revealed that I had a muscle bleed that was bigger than a fist. This mass was irritating my muscles and nerves to the point where I thought I was going to go crazy from the pain. All the morphine in the world did not seem to even take the edge off. Finally they gave me Fentanyl, it's a very strong narcotic and it's actually used sometimes during child birth.
This medication helped take the edge off but I was still in a huge amount of pain.
Painkillers are not the answer though, they have a lot of side effects and can be highly addictive. Sometimes the use of these medications can not be avoided in which case I would recommend taking them in moderation and only when absolutely necessary. Of course, I am not a doctor just a patient with 27 years of experience!

Friday, October 22, 2010

Sad


So, it's been about three months since I lost my angel Charlie. Lately, I've been feeling a lot better but the other day I just stayed in bed all day. I woke up to eat and shower and then just went right back to bed. I wasn't crying or anything like that I just felt awful and totally drained. It could be because I did have infection and I was worn down but some days I feel like I will never be completely happy without Charlie. I always dreamed of coming home with my children and how happy it would make my mom and Charlie but that is a dream that has been taken away from me and I don't know how to get over it. Mind you, since being diagnosed with Hemophilia I have had many dreams taken away from me. I'm sure I don't need to list them but just in case you were wondering, employment, travel and every day normal activities. I guess those didn't hurt me as badly because they happened slowly over time. But death is so final. Also, I think with my illness I feel like I can control it to a certain extent, for example I can live the healthiest lifestyle I can which will help a lot. However, when Charlie passed away no one asked me if it was ok and I had no control of it what so ever. I've been replaying the last 5 weeks of his life over and over again in my head. I sometimes think that maybe if I had more money I could of brought him to a better hospital or maybe if I went to more masses he would still be with me. Just like my set backs with Hemophilia, I guess I have to realize that I can't control what happened, but I can control how I move forward with my life and Charlie would definitely want me to have fun and live life to the fullest just like he did!

Monday, October 18, 2010

Courage


So, I spent the weekend in Toronto for the National Youth Committee retreat. It was wonderful! I could spend a lot of time talking about all the great speakers and all the things I learned but, I have to talk about the most interesting comment I heard. It was during one of social nights. The comment came from a person who had never attended a Canadian Hemophilia Society event before and was so enthusiastic throughout the whole weekend. At the party he said to me, "you know what Ryanne, I think people with Hemophilia not only have normal lives, but I think they have event better lives then everyone else." He explained that because we are often so sick that when we are healthy we really make the most of it!
I was also impressed with every ones careers. There were flight attendants, teachers, engineers and journalist. Everyone seemed to be going after what they wanted out of life and didn't let their condition limit them.
Since speaking with everyone I have decided to look for full time work! I have a communications degree and a journalism diploma and I think it's about time I start using it again. I may get sick again and have to quit but if I try to work full time at least at the end of the day I know I tried my best!

Wednesday, October 13, 2010

Hemophilia Conference

So, this Friday I am off to Toronto for the National Youth Committee conference for the Canadian Hemophilia Society. I am really looking forward it as I get to see a lot of my wonderful Hemophilia friends. I also have to speak at this session which I really enjoy so there is lots of things I excited about. However, I am also a bit nervous about it. Every time I travel I am always afraid of getting sick, either an infection of some sort, a cold, a flu or a bleed. I know that is very paranoid of me but on the other hand, it's not entirely unlikely that I would get sick. I haven't had a bleed since July so I'm kind of on the count down now until my next bleed. Not that I want to have a bleed but it is one of the only things I count on!
In anticipation of getting sick I am bringing my travel letter which outlines what to do in case I do have a bleed. I'm also bringing pain medication and about four different types of antibiotics!
Maybe I am being a bit of a worry wart but when it comes to Hemophilia I think it's better safe than sorry!

Friday, October 8, 2010

Ups and Downs

So, I took a week off to rest up my knee and I am happy to report it is feeling 100% better.
Today ends a week of doctors appointments for me and I am happy that it is finally Friday.
Tuesday I met with my gallbladder doctor and he was amazed that my gallbladder is actually functioning at a normal level. Not just normal for someone with gallstones but normal normal! I was really glad to hear that. Also, he prescribed a drug to me that will hopefully break up the gallstones which means no surgery. I am praying this drug will work for me and I will be free from gallstones.
the next appointment was with my dentist. My wisdom teeth are still causing me problems but I am getting cleanings once every three months so hopefully that will keep them clean and they won't cause me any more pain. Also, I will avoid another surgery.
I am really finding it hard to find a balance lately. I feel like I am always at the doctors and I am not really doing anything to cause it. It's not like I am out water-skiing and playing rugby on the weekends. I guess I should know by now that the life of a Hemophiliac is full of ups and downs and I will just have to get use to it!

Thursday, September 30, 2010

Special Day

So, today I had a special mass for Charlie. In the catholic religion, when someone passes away, it is recommended to have a mass for them. So that is what I did.
It was just a short mass and it wasn't the funeral or anything but I thought I would invite a few of my friends. To be honest, I wasn't expecting a lot of them to come, just because it's a week day and it was early in the morning.
I had a terrible sleep last night and when I woke up I wasn't looking forward to going to mass. I knew I would break down and I knew it was going to be hard.
But I was very wrong. It was hard, but I had so much support it was overwhelming!
We arrived about 15 minutes before the mass and every time I looked around the church, more and more of my friends walked through the door.
I honestly couldn't believe it! About 10 of my friends came to support me for that whole hour and I will never forget it!
Afterwards we went for breakfast and laughed and cried it was a great sad day.
I will continue to have masses for Charlie but I feel like next time I will be strong enough to go by myself.
In other news, I have rested my knee and I am back for my first day at work in a week! I'm actually really looking forward to it. I never thought I would say that!

Tuesday, September 28, 2010

Dentist Ordeal Part II

So, I went to the dentist today for a cleaning only to discover that I have a cavity.
The cavity is not really my fault. It's actually located in one of my wisdom teeth that isn't even out of my gums yet so it's impossible for me to reach with my toothbrush so it's not completely my fault.
Lately I've been flossing like a crazy person and I have a decked out tooth brush but alas I have another cavity.
Other than that new discovery, the appointment went OK. The only problem I have now is that the cleaning was at 12:30 p.m. and my teeth are still bleeding! (it is now 8 p.m.). So besides 7.5 hours of bleeding it has been a good day.
I'm still resting my knee for a few days as well. Hopefully I will be back to normal soon!

Monday, September 27, 2010

All's well that ends well

So, today I went to the Hemophilia clinic at 7 a.m. After an examination my hemophilia nurse was not convinced the pain in my knee was a bleed so I saw the Hematologist, physiotherapist and had an ultrasound.
My physiotherapist suggested that the pain could be caused by osteo arthritis. I understand that at first the symptoms pointed towards that and a lot of Hemophiliacs do have arthritis related problems but I was really upset that she would suggest that without knowing 100%. It was really scary to think that I would have yet another long term health condition!
Luckily, it turned out just to be inflammation in the joint from being over worked.
I say just inflammation like it is no big deal but it did cause me to spend all weekend in bed, 9 hours at the hospital and now I will be taking about 3 days off of work.
Don't get me wrong, it's nice to kick back and relax for a few days but there is only so much of it you can take. I guess I can look on the bright side and take this time to catch up on some housework and maybe work on my blog!

Saturday, September 25, 2010

Party Pooper


So, today I woke up and thought, hey I have a bleed in my knee. It's never a good day to have bleed but today just happens to be one of my best friends birthday party.

It started to get sore around noon but it took me until at least supper time to finally admit to myself that there was no way I was going to be able to go out all night with a swollen knee.

I called the birthday girl and of course she was not mad at all she was just concerned about me. I know it sounds immature but I was so mad that I couldn't go out. Even after all these years it's still hard for me to just drop everything I'm doing and lie around in bed.

Luckily most of friends are use to me having to cancel every now and then but I have to say it did break my heart to not go out with her. She has been there for me through good times and bad times and I hate it when I am unable to return the favour!

I guess I'll just have to get her an awesome birthday gift!

As for my knee I am still deciding what to do. The Hemophilia clinic is not open on the weekends and the emergency room is just a nightmare so I am going to give it one more day and if I am still in lots of pain by tomorrow then I will go in.

Part of me hopes that I will wake up tomorrow and the pain will be gone but I know the chances of that are very slim.

In the grand scheme of things spending one day in the hospital is really not a big deal but it still takes me a day or so to wrap my head around it.

In the mean time I will put my legs up, watch TV and try to relax!

Tuesday, September 21, 2010

Torture Test

So, Today I went for a HIDAscan its a special scan used to get look at your small intestines, liver and gallbladder. I got one today because my gastric intestinal specialist wanted me to get one so he could examine my gall bladder and hopefully help me with my gall stones.
I never had one of these scans before so I was very nervous this morning when I arrived at the hospital.
After a little wait I was put into a room with this giant machine and two technicians. They gave me an IV and injected me with a radioactive chemical. Then they placed this rickety old machine over me every 20 minutes.
After two hours of this I was then injected with a hormone that causes your gallbladder to contract.
This caused a lot of pain and cramping in my stomach but it went away after a few hours. After a few more pictures I was free to go.
I felt awful afterwords and I really hate the idea of having been injected with radioactive material.
Then again when it comes to something like that what are you suppose to do? If I don't try and do something about my gallstones I will end up having to get surgery which really scares me. So I'm trying to manage it any way I can.
I think a lot of these diagnostic imaging tests are designed for people who get maybe one or two in a lifetime.
It's not meant for people to be exposed to radiation over and over. But, when it comes deciding to get CT scan or not, I feel like I am in between a rock and a hard place. If I don't get it I could be bleeding internally which can cause permanent joint, muscle and nerve damage and not to mention a tremendous amount of pain.
If I do get the scan we can see if I am bleeding internally right away even though I know I am exposing myself harmful radiation.
I guess in this case you are damned if you do and damned if you don't!

Sunday, September 19, 2010

Hemophilia Camp

So, today I should of been just getting home from Hemophilia camp.
But I ended up not going, mainly because the other people I know ended up cancelling. Another reason was because I was afraid I would get upset about Charlie while I was away and at least when I am home I have Zane and I can easily call my momma.
The few weeks leading up to camp I would mention it in conversation and people would screw up their face and say, Hemophilia camp? What do you do there?
Well at camp, we do all the things you would do at any other camp, hike, swim, play games and do arts and crafts.
Most hemophiliacs live completely normal lives, they wall climb, the ride bike they do whatever normal healthy people do.
Every time someone asks me, what do you do at camp? I am confused. They act as if there is nothing a hemophiliac could possibly participate in at a camp.
Which makes me wonder since Hemophiliacs can participate in pretty much any activity what kind of knife juggling, running with scissors camp are all these other people attending!?

Friday, September 17, 2010

Decision Decisions

So, Canadian Blood Services was recently awarded 10,000$ in a negligence suit they filed against Kyle Freeman. Freeman donated blood and lied about his sexual status. When asked on the donation questionnaire if he had had sex with men he answered no. The decision to side with Canadian Blood Services was made, according to the judge, based on facts and not discriminatory.
I have to say I agree with the decision. It's easy to say everyone should be included when you are perfectly healthy and you don't rely on the blood system. But, if you are like me, you need the blood system to be the best it can be.
When someone tries to donate blood and they are turned away, they must feel awful and I can relate to that. With my illness I have felt like an outsider much of my life. But, I am the one who has to live with the results of the blood transfusion not the donor.
I understand that this might not be a popular opinion. I don't want anyone to feel bad about themselves or feel left out just because of their sexual orientation but if it is true, that men who have sex with men are more likely to transmit disease then I think they should be excluded.
With that being said, if people with brown hair, or people from Newfoundland or people who wear black shoes were a high risk group then I think those people should be excluded too.
I don't have the scientific information to say that men who have had sex with men since 1977 are a high risk group. But I can say as 100% fact that the families who have lost their loved ones from the tainted blood scandal are heart broken. I have listened to the stories of people who have had to watch their children, brothers and husbands die a slow, painful death and I think that we need to do whatever we can to ensure this doesn't happen again even if it means hurting someones feelings.

Wednesday, September 8, 2010

Ordeal at the Dentist

So, as if I don't have enough doctors already I have to add a dentist to the mix. Not just any dentist though, a special dentist who is use to dealing with people with bleeding disorders. Normally I don't' really care about which dentist I see but this dentist is all the way across town and it cost $ 17 in a cab each way. I don't take the bus to the dentist because it takes like 3 transfers and I don't take the bus if it has any transfers because I end up in the craziest places.
I hate the dentist, I hate the needles in my gums, the sound of the drill and I hate the spray of my own teeth splashing up on my face. Anyways, normally fillings aren't too much trouble for me but I do have a lot more bleeding than a normal person. Thankfully I have no more cavities and for the most part a healthy mouth! At least that is one part of me that's healthy!

Wednesday, September 1, 2010

You have to admit it's getting better

So, I went to grief counselling today and my counsellor feels that I should be going every second week instead of every week. She feels I am doing well. So that was good news to me.
Also, today was the day of my big speech! It went really well in my opinion. I was nervous I have to say. The auditorium was huge, much larger than the lecture theatres that were in my university. There were about 200 students there so I was pretty intimidated. I spoke for about 5 minutes, then we turned it over to the students. For about 50 minutes they asked me about everything from having children to shaving my legs. I was really glad that they were interested and kept coming up with new questions. It went really well, I was glad I did it and I hope the students learned some new things about Hemophilia.

Tuesday, August 31, 2010

Grief and Education

So, Tomorrow marks my second week of grief counselling. I have to say its been very helpful. I still think about Charlie everyday. Sometimes when I actually think about how I will never get to speak to him again and hear his big booming voice I get so overwhelmed I have to change the subject.
Tonight I am writing my blurb for my little presentation tomorrow. I will be speaking to some members of the Hematology department at the Foothills Hospital as well as some of the first year medical students at the University of Calgary. I only have to speak for 10 minutes but I want to make sure they have all the facts they need to understand my 27 years with this condition. I would also like them to learn a little bit about how it actually feels to be in and out of hospitals and how hard it is to communicate sometimes with doctors that aren't familiar with your condition.
I am excited to talk with them and hear what questions they will have for me but at the same time it's not like I have accomplished anything. I mean basically I was just born with this disease I didn't really do anything. But some days just living to tell about it feels like a big achievement!

Monday, August 30, 2010

Speech Speech!

So, I am looking forward to September for a few reasons. First of all it means the end of summer and in my mind hopefully the end of all the bad things that have been going on in my life lately.
September 1st, is also my best friends birthday. Being the best friend of a hemophiliac is not the same as being a best friend to a normal person. Over the years she has had to learn all the hemophilia lingo, bleeds, plasma, units, all of it! She's also had to spend more time then she would probably would have liked in the hospital.
And lately she has also added grief counsellor to her long list of skills.
Also, on September 1st I have been asked to speech at the University of Calgary to the first year medical students.
I am really looking forward to having the opportunity to speak to students who may be treating me in the future!
I have been asked to spend about 10 minutes talking about my condition and then the students will then be given the chance to ask me whatever they want.
If it was any other topic I might be a bit nervous about speaking in front of so many people but when it comes to Hemophilia I am an expert!
I've also dealt with lots and lots of medical students over the years as a lot of the hospitals I have been treated in are teaching hospitals.
In other news, I have been going to grief counselling and it has been really helping. Each day I've been feeling a bit better, but then at the end of the day and I don't cry I kind of feel guilty so I still have some issues to work out but its getting better!

Tuesday, August 24, 2010

Still Sad

So, today I went for my annual check up at the Hemophilia Clinic I saw my hematologist, social worker, nurse and had 12 tubes of blood taken. This is normal for me not much to report about it really. What has been hard for me over the past few days is Charlie. I can't get over it yet. I still have days where I just cry and cry. Any love songs or love scenes in movies I just lose it. I think it makes me think of my mom and how she lost the love of her life. I also cry because I don't think that I will ever find anyone in this world that loved me as much as Charlie did. He was so proud of me and never judged me. I start grief counselling on Wednesday so I hope that will help! Some good news today is that my mom was released from the hospital so that's a big relief. This blog was originally started to discuss my Hemophilia but this death has just turned my life upside down, so much so that lately disease has been the last thing on my mind.

Friday, August 20, 2010

When it rains it pours!

So, as if my family didn't have enough going on this summer my mom is now in the hospital! A few days ago she had an accident and broke her hip. She was rushed by ambulance to the hospital and had emergency surgery. They placed three pins in her hip to help repair the damage and they say it should take about 8 weeks of rest for her to recover.
First of all, my mom is the sweetest person in the world and does not deserve to suffer like this! Secondly, She is still grieving and it breaks my heart to think of her being sad sitting in a hospital bed in pain.
For a little while I considered going back to Newfoundland but after some thought I decided that I can't afford to go back, I also have a family here in Calgary that I need to consider and they need me too.
Luckily my sister is home taking care of her so that makes me feel a bit better about the whole situation.
My mom is strong and I know she will get through it I just wish I was there to take care of her especially since she sat by me and held my hand during countless hospital stays.

Monday, August 16, 2010

One Month Today

So, it has been one month today since my step father Charlie has died. I don't know why exactly but today has been a hard day for me. I thought once I got back to Calgary it would be easier ut of sight, out of mind kind of thing but I feel just as upset as I did in Newfoundland. I think what triggered me today was the fact that I began looking at wedding songs and it got me to thinking about how Charlie will not be dancing with me at my wedding. I guess I am also stressed because I have been putting my health on the back burner this summer and I am worrying about that. Coming up I have a doctors appointment with my hematologist, gynecologist, family doctor and dentist. I should be focusing on that but all I can think about is Charlie. I guess time heals all wounds and I can't wait for that day to come!

Sunday, August 8, 2010

Nightmare




Well, my family emergency turned into devastation.
On July 19th my step father died due to complications after surgery for a major heart attack.
I guess you never know how you are going to react in those situations and since I've been through so much in my life already I thought I would take it better I guess.
But I didn't, for the first day I just kept saying no there must be a mistake. I would not accept that he had passed away. It was easier that way and it felt a lot better than dealing with the fact that he actually died.
When he first took his heart attack I flew to NL within 24 hours. I was with my mom and my step father Charlie for every step of the way. Every blood test, ct scan, x ray and ultrasound. Mom and I spend 5 weeks in the hospital. It was really hard on all of us and I eventually ended up in the hospital myself. I spent about 4 days in the hospital and received 26 units of blood. By this time Charlie had had his surgery and was recovery nicely.
They took him out of ICU and his breathing tubes and iv's were removed. The doctors wanted me to stay until Monday but I wanted to get back to Calgary to be examined by my doctor that I had become so comfortable with.
I went to see Charlie right before I left. He was up and out of bed but the scars from the surgery were so brutal.
I chatted with him for a minute then walked away and said bye I love you.
By the time I got to Toronto on Saturday he had collapsed. He passed away Monday morning.
It is so hard dealing with illness and death but there are a few things I feel like I will never get over. I will never forgive myself for going back to Calgary and I will never forgive myself for not saying a proper heart felt good bye to him. In the end I know he loved me and I know he knew that I really loved him too!

Monday, June 21, 2010

Family Emergency


So, on Thursday my step father had a massive heart attack.
My mother phoned me to give me the bad news while I was on my way to work. I felt like the wind was knocked out of me. I flew down on the first flight and got to Stephenville early Saturday morning.
He was flown air ambulance to St. John's and my mother and I have been by his side ever since.
I have to say though in all honesty I would much rather be sick then have anyone I love in the hospital, believe it or not it much less stressful being the sick one.
I got my wish though because on Monday night I ended up in the emergency room myself with a small hip bleed.
I was give four units of fresh frozen plasma and now I feel back to normal. Well as normal as you can feel living in the hospital.
Right now mom and I are waiting to get the test results back. I never realized what stress I put my family under before until now. I think next time I have to go to the hospital I'm not gonna tell anyone until I'm all better!

Thursday, June 3, 2010

Inspiration

So, a good friend of mine recently came to stay with me for a few days.
She has a chronic illness like me and so when she said she was coming I thought of all the things I could do to help her.
I did as much research as I could on her condition and was prepared to give her my speech when she got here.
She was diagnosed when she was 16 and since I was diagnosed at 7 months old so I wanted to talk to her about how its important to accept your limitations rather than rebel against them.
I wanted to tell her to take lots of vitamins, get lots of sleep and eat properly.
But in the meantime, I think she was the one who had a lot to teach me.
She lives her life one day at a time and doesn't let anything stop her. She doesn't focus on her disease and lives like to t the fullest when she isn't sick.
Lately, I've noticed that I've been a bit extreme in that I don't do a lot, I never stay up late and I'm always worrying about travelling and working and never doing the things that I want to do!
I think its important to take care of yourself but in the end I little fun never killed anyone!

Monday, May 24, 2010

Beets!


So, since this whole gallstones diagnosis I've been on a very strict diet, nothing but fruits and vegetables until I am 100% pain free. Especially beets! for some reason beets are the best thing for gallstones.
Its been so difficult for me. I'm still not fully recovered from my last episode, my iliopsoas bleed in December 2008.
I know you can't decide and say, OK I'm ready for my life to be turned upside down.
The week before I got sick I worked the most hours I have worked since I left my full time job in February 2009.
I felt like I was slowly but surely getting back to my normal.
Now, I just feel like I'm working to get through this obstacle, but we all know that in a day, or a month or even a year there will be another episode to do with my health that will set me back. Not to mention all the other normal things life throws at you.
Oh my, I guess I just have to take it one beet at a time.

Sunday, May 23, 2010

Scared

So, Friday when I went to the hospital for my daily treatment my doctor said that he wasn't happy with how long it was taking me to get better!
He decided to do a follow up Ultrasound and a surgical consult. The ultrasound went fine and then a surgical resident came to talk to me.
The said they would rather do the surgery now when when everything is planned and somewhat normal rather than wait until my gallstones bother me again and everything is inflamed and infected.
The whole time she is talking I'm thinking, there's no way you are operating on me!
You see I have several things that require surgery, 5 impacted wisdom teeth, ovarian cysts and now these gallstones.
I've always been told that surgery it too risky so to have someone sit down and discuss how my surgery would go was scary.
In the end we decided that if I have no further pain I'm good to go. If the pain comes back or gets worse they want to operate on Tuesday!
In my world that is an absolute nightmare I have a fear of being put under and a fear of getting cut open and parts of my body being removed.
Anyways, through some research I found lots of information on the Internet that says a low fat diet can keep you from having a gallstone attack.
Awesome, so Zane goes to the grocery store and buys me every fruit and vegetable they had in Safeway!
So far the diet has been going pretty well.
I did spend one day feeling sorry for myself. I mean its hard to one week eat whatever you and then the next week you have to cut out everything you enjoy eating.
I tried feeling bad for myself and cried and stuff like that but it just upsets everyone around me, my Mom, my Dad and Zane. They are already stressed out enough so I sucked it up.
Today was a much better day. I met with a natural path practitioner and she was great. An angel really.
She gave me great ideas and recipes that I can follow. She also has some ideas for getting rid of the gallstones completely my eating certain foods.
For example, she said beets are great for gallstones so I've already eaten 3 beets today which is more than I've ever eaten in my whole life. They actually aren't that bad besides the fact that they make everything red my pots and pans and my teeth and hands. Oh well I feel like that is the least of my worries at this point.
I must say though I do feel I lost something. I know its only food but its strange to think that I will never eat ice cream cake again, or enjoy a nice cup of coffee with lots of cream and sugar.
I know those things were just killing me slowly but they felt good going down.
I do feel like this new way of eating will save my life or at least make it more enjoyable!

Thursday, May 20, 2010

Stones

So, I went to work Monday with a little pain in my side. As the day went on it go worse and worse. I never had a pain like it before so its hard to describe but it hurt to move hurt to breathe in and I was really nauseated.
By the time Zane got home from work I had my mind made up to go to the emergency room.
Which should tell you how much pain I was in because I never go to the emergency unless I absolutely have to!
When i go to the emergency room I play the Hemophilia card. I call the switchboard and have them page the hemotologist on call. When I see the triage nurse I talk about how I could be bleeding internally and I always say I feel about 10 times worse than i actually do. If i don't do this I could be in the waiting room for 12 hours and I can't take that chance because it is quite possible I could be bleeding internally.
Anyways, after a few hours we see the doctor, they give me a steroid to relax my muscles, morphine and an anti nauseant. A few hours later I am released. They assume it's gallstones. I was diagnosed with gallstones with I was 12 years old because of a mineral build up from all the blood transfusions.
The next morning Zane and I go for my ultrasound, they find that my gallbladder is swollen and infected. Awesome.
The doctors decide to give me four units of fresh frozen plasma. Also they decide to give me all kinds of drugs.
Anyways this protocol continues Monday, Tuesday, Wednesday, today and I have to fo back Friday and Saturday.
This is ridiculous right? I'm exhausted, nauseated, hungry and sick.
Today during my daily hospital visit, my nurse gave me the suggested diet for people with gallstones.
It's brutal! no coffee, no booze, no dairy the list of foods to aviod goes on and on!
It may not seem like a big deal, but I just feel like the more i go along with the disease the less and less I can do.
The nurse said today, yeah its all fun and games until you get get an attack.
And i'm thinking yea, because my life has really been fun and games up until this point!
Seriously, I just feel like what else is going to get taken away from me? But as I've learned me feeling sorry for myself doesn't get me anywhere either.
I'll just have to suck it up and eat my organic fruits and berries and shut up!

Thursday, May 13, 2010

Mother's Day


So, Mother's Day was just a few days ago. I worked in the morning and then I spent the afternoon phoning all the mothers! My mom, Zane's mom, my step mom and Zane's step mom. We are blessed to have four wonderful mother figures in our lives.

As I've mentioned before my mother is the most important person to me in the whole world. I think a lot of people think that about their own mothers. But my mom managed to stay so cool calm and collected through all of my traumatic events. Even when i got a really bad cut on my head and ran up the driveway with blood spraying from my forehead. She made me feel like a normal person which I think is the best thing she could of done.

I sent her a beautiful card for mothers day and a gift certificate. I always wish there was more I could do for but she is also so appreciative of everything I give her.

Mother's Day is great but it always gets me thinking about myself and if I will ever have my own Mother's Day.

Ever since I was about 12 years old I dreamed of having children. i would ask for baby name books for Christmas and spent hours and hours with my friends talking about how we would would have 5 and 6 kids and what colour their hair and eyes would be!

I always knew that with severe factor 5 Hemophilia having children would be difficult. but its not something that I had to worry about until later. Well now it is later, I am engaged and at the age where I would like to soon have a child.

So I try and do some research. There is NO information on the Internet about what happens when I severe factor 5 hemophiliac has children.

So I question people in the Hemophilia world which isn't a whole lot of help either. There are only 150 cases of my condition reported world wide so I feel like there's no one that can say for sure what will happen.

Normal healthy women have miscarriages and complications during labour so this risk for me is immense.

The only guide line I really have is a lady who is about 65 years old and lives in the US. She told me that she tried and tried to have a baby but miscarried every time.

Also, my oldest sister is a symptomatic carrier of factor 5 which means her level of factor 5 are just a bit lower than a normal persons.

She has one son and had a lot of complications with him. So, with my levels at less than 1% it seems like it would be difficult.

I always thought about adoption but I've been looking into it and someone with a chronic life threatening illness is so exactly a prime candidate.

So with all that being said, I don't think I've actually accepted it. In my heart I feel like I was meant to be a mother and some how I will figure out a way to have a child. I can't really see myself doing anything else with my life.


Wednesday, May 5, 2010

Good Deed

So a few weeks ago I met a fellow Hemophiliac. He has a rare factor deficiency and a few years ago he suffered a stroke.
He doesn't have a lot of family support and has be unable to work since the stroke.
Our Hemophilia nurse suggested that we get him a laptop.
She felt this would open a lot of doors for him, allow him to talk to family, write resumes, apply for jobs and make new friends.
I wrote a proposal to our Chapter and within a week they approved the funds to buy him his very own laptop!
Today, Our president and I dropped off the computer to him. It was so wonderful to see him so happy. This is the first computer he has ever had.
I am hoping this will improve his quality of life and I must say I am so grateful that I got to be a part of making someones life better!

Friday, April 30, 2010

Disclosure

I recently met a new friend. She's great. She has a 7 month old lab and she lives just next door so her and I have been taking our dogs for walks together.
It's nice to have a great so close and who also likes to walk!
Her and her significant other just installed a Hot Tub so this evening she invited us over to hang out in the hot tub!
This is where things get wierd for me. Her and I had just walked for two hours, so sometimes if you have a ache or pain the hot water sometimes causes your blood to rush to a particular area which can cause a bleed.
So I go over anyway and decide to just put my feet in! Of course they are also having beer and wine but I had to just suck it up and stick to juice.
Sometimes it's the little things like that, that make me feel the worst about my condition. When I was younger I would of just went for it simply because I didn't know any better.
Now I owe it to myself to take the best care I can of myself no matter what!

Saturday, April 17, 2010

World Hemophilia Day 2010


I feel like I have so much to write about today. First of all I knew all along that I had the best mother in the whole world but she really brought it to my attention again last night when we were talking about me growing up with Hemophilia.
The conversation started after we had both watched a great piece on global news calgary about a local little boy living with Hemophilia.
She said well you know Ryanne, I had fun growing up with you and your Hemophilia, I didn't know anything about it but we both learned as we went.
Now, I think that if someone can say that to you honestly after 27 years of transfusions and bleeds and crying and back and forth to all kinds of doctors and hospitals, not to mention all the regular child raising problems then that person is truly and angel.
Speaking of other angels in my life my friend Cheryl sat with me all day at the coffee shop for no other reason than to keep me company at My World Hemophilia Day booth!
My other friend Ange stopped in two and spent money on a Hemophilia ticket to a prize that i'm sure she doesn't even want!
I must say I was overwhelmed with support today! My father took us out for a delicious supper and my fiance Zane bought me a beautiful gift.
But thats not the point of this day. The point is to raise awareness to help those living with Bleeding Disorders and remember the people who have passed away because of the disease.
A lady that comes to mind is Sharon, she lost her two sons to Hemophilia while they were both only in their early twenties. I am sure she would love nothing more than to have them there with her today no matter how sick they were.
I would also like to mention Zane's uncle Anthony who died due to complications of Hemophilia.
It may seem like a wierd thing to celebrate , a bleeding disorder, something that has caused so many people so much pain but I think the fact that I have survived is reason enough!

Monday, April 12, 2010

Factor

I'm sure I've mentioned it before but I have have had more than 1,000 blood transfusions in my life.

The costs of the transfusions, scans, blood tests and over night stays have cost me a total of $0.

Not one single cent for me to get the treatment I need. If a Hemophiliac does not get treatment it can cause life long damage. For example, if its a small bleed best case scenario it will clot on its own but only after leaving a small blood clot in the joint or muscle causing unbelievable pain. A big bleed can continue to bleed and bleed creating a huge mass of blood in the body which can push on internal organs, cause muscle wasting and of course lots and lots of pain.

I've always had access to plasma. I've had to wait long hours in waiting rooms, and fight with doctors to give me a transfusion but I've never had to worry about how much a hospital trip would cost me or how I would access care.

I've recently learned of a sweet little baby boy in the Phillipines. Factor is hard to get your hands on over there and when his parents can get it, it is extremely expensive.

I spend a lot of time thinking about how hard it is for me to live with Hemophilia. I never stop and think about how hard it is for other people who aren't lucky enough to have in a country with free health care!

Thursday, April 8, 2010

Ryan White

Today marks the 20th Anniversary of Ryan White's death.
Ryan White was a regular kid who did some extraordinary things in the face of great difficulties. He was diagnosed with Hemophilia whn he was just a baby. He struggled with bleeds throughout his life and at only 13 years of age he was diagnosed with HIV from contaminated blood.
I can't imagine how difficult this must of been for a 13 year old boy to comprehend. Not only did he have his own emotions to deal with but people around him didn't understand HIV and he was banned from going to school and treated horribly by his community and the people he once called friends.
Ryan was not the only hemophiliac to be infected with HIV. I have read that about 50% of the Hemophiliac population was infected with hepatitis C or HIV during the contaminated blood scandle in the 1980's.
Many families had to watch their children suffer and deteriorate and die. It is absolutely heart breaking.
Ryan White tried to raise awareness about the disase all while keeping a smile on his face. I think he is a great role model. I think it's important for not only the hemophilia coommunity to
remember him but for everyone.

For more information about Ryan White visit www.ryanwhite.com

Monday, April 5, 2010

You got to do what you got to do!

I recently went to visit one of my hemophiliac friends at the Foothills Hospital here in Calgary.
I've been to visit him before when he had a transfusion but this time he was in with a bleed that the doctors still aren't able to fix.
I expected him to be a bit upset or maybe a little scared.
But I walked in the room to find him laughing and joking as if nothing was wrong.
I sat with him for about an hour. He was on pain killers and had an IV in but he didn't complain about a thing! He actually asked me how I was doing and listened to me complain about things going on in my life.
His treatment includes getting infused every 4 hours and blood work and CT scans and God only knows what else.
He is so strong and does it while appearing as though everything is fine.
I guess it's amazing what becomes normal to you after living with Hemophilia since birth.
I remember thinking how awful it is for him to have to spend all of Easter in the hospital but it didn't seem to bother him at all.
And now what I think about it i've spent birthdays, easter, Valentines Day and Christmas in the hospital and when you are in that situation I guess you just have to suck it up and do what you have to do!

Saturday, March 20, 2010

One Two Three Four


I spent 8 hours in the hospital on Friday. It took four tries to get the IV in but eventually we got it!
Four units of plasma later my pee was back to yellow!
We are still not sure what was wrong with me, blood tests, urinalysis and a CT scan revealed that everything was normal.
So I am home now safe and sound resting up.
It was my Dads turn to spend the day with me this time and it was nice because we got to spend some quality time together. Eight hours of quality time.
While at the hospital I also got to meet another hemophiliac. A factor one hemophiliac in fact, which is very rare!
It was interesting to meet with him and find out what his challenges are.
I also encouraged him to get involved with the Canadian Hemophilia Society which I think is a great idea for anyone. It helps you to realize that you are not alone and that there are people just like you struggling with the same things.

Thursday, March 18, 2010

A pretty good year

Well I am sad to say that tomorrow marks the end of a pretty good run for me! Tomorrow I am going to the foothills hospital to receive four units of Fresh Frozen Plasma (plasma is a part of your blood that helps you clot.) This next transfusion will be the first for me in a year. That is the longest by far I have ever went in my life without blood. Pretty exciting stuff!.
It all started about a week ago when I got a urinary tract infection. I went to the family doctor, got some antibiotics and went on my merry way.
Sunday night a noticed that well to be frank my pee looked like red wine.
So I spend the entire day today in the hospital it took four tries to get an IV, lots of blood work taken and a CT scan. Only to find thay well we can't find whats wrong with me.
I must say this is rare for me, normally after a few tests we know whats up.
The good news is my vitals are good so I don't think I am in any serious danger.
But I have to admit that when I completed the urine test and saw what was in the container I started to cry. I often bleed internally but when you actually see the blood its a different story. It's scary.
That wasn't the worst part of my day either, while I was in the bathroom I over heard Zane telling his work that he couldn't come to work because he wanted to be at the hospital with me. That really broke my heart. It is bad enough that I have to take time away from my life but when it starts cutting into the time of the people you love it really takes a toll on you!
On the bright side I am lucky enough to have someone that actually wants to sit by me all day and is nice enough to bring me chicken fingers and cinnamon buns!
So with that I will Thank God and head to bed as I have a long day ahead of me!

Wednesday, March 17, 2010

Happy Saint Patrick's Day

I love Saint Patrick's Day!
I loved it when I was a child because I loved making green cookies and pinching people who weren't wearing green.
As a student I loved going out and drinking green beer and celebrating with friends
Don't get me wrong, I still like celebrating but since I met my fiance Zane, Saint Patrick's Day reminds me of Zane's uncle Patty.
Patrick was born with severe Hemophilia. Ever since he was a baby he suffered many bleeds and eventually died at a young age from complications due to Hemophilia.
If you meet Hemophiliacs today, it's hard to imagine someone dying from the disease. They are vibrant, healthy young people that on the outside look perfectly normal.
That is only because of the hard work the Canadian Hemophilia Society has done to advocate for patient care, the research and new treatments in the medical world and all the hard working doctors and nurses who ensure patients get the treatment they need.
I am so happy to walk into a room full of hemophiliacs without seeing canes or walkers or anyone limping or in pain.
It's a wonderful thing that we can live the way we do.
However, I think it's so important that we remember the people who came before us, the people that bled until their knees swelled and just didn't have the level of care that we have now.
After all we owe a lot of what we have now to them.

Monday, March 15, 2010

To a different drum

Over the weekend we had yet another successful Hemophilila event. We gathered at a local community hall to host a drumming session.
The drumming was fun and it was nice to get together with everyone.
During the session we all sat in a circle, there was about 20 of us so it was quite a large circle.
As I looked around I noticed that there were only two people in the room who actually had Hemophilia , myself and another lady.
There were eighteen other people that were there simply because they know someone with Hemophilia or care about the cause. Sure there were probably some people there for the free food or the free drumming session but mainly people were there to support us.
For a second it was really an amazing feeling to know that all these people were there for us.
I am lucky enough to have had that experience in my own life. Its never been just me alone in this fight. I've always had lots of friends and family to help me through.

Saturday, March 13, 2010

Hemophilia Bracelets

For as long as I remember I have worn a Medic Alert Bracelet (Or a hemophilia bracelet as I like to call it.)
My mother always tells me about how when I was a child I would try to rip off my bracelet or take it off. I just absolutely hated it.
As I got older, they came out with really nice jewelry through medic alert, necklaces, pendants and bracelets, which were actually really nice and didn't clash with my style or whatever style I thought I had as a teenager!
Over the years I have tried all of them but the bracelet seems to be the best. The one I have right now matches my watch so most of the time people don't even know that it is in fact a medic alert bracelet.
When I was at a conference in Ottawa I met a guy who had his medic alert information tattooed onto his wrist.
I thought it was a great idea because it was unique and he never has to worry about losing his bracelet!
Whatever method you choose wearing your medic alert bracelet key! It can save your life and in the end what is more important than that!?

Wednesday, March 10, 2010

Happy Birthday to Me!

So I just had my 27th Birthday! It was great. I got lots of beautiful cards and gifts. I had a birthday party as well and that was a lot of fun!
Every year when I have a birthday that I am able to enjoy with friends and family I am so happy.
It reminds me of my 13th birthday that I spent in the Childrens Hospital.
It sounds awful I know, but looking back on it, it wasn't too bad.
First of all, it was great to have my whole family together. My mom had quit her job to come stay with my while I was in the hospital, my older sister Kelli came to visit me from University and my father flew down from Alberta.
For my birthday we went to Pizza Hut and I will never forget it because it was the first time we were all together again since my parents got divorced when I was 6.
It was also a good birthday because my doctor who was only a resident at the time, made me a birthday cake.
The staff also had a cake for me and sang me happy birthday! It was really special.
I guess it just goes to show you that no matter how bad things get, you can still find some joy. I feel like I have been doing that my whole life and sometimes I get worn out and tired of it, but so far i've always been able to smile after it all.

Wednesday, February 24, 2010

Reunion

So its been 10 years since I graduated high school! I can't believe it. Our graduating class is discussing getting together next year to celebrate the occasion.

I am really looking forward to it I must say. Especially since I wasn't suppose to even make it that far. I remember my father telling me about how the doctors told him that they didn't expect me to live long enough to graduate high school so it's nothing short of a miracle that I am helping to plan my 10 year reunion.

Some people say they hated high school and I understand how they feel but for the most part, I really enjoyed it. I had the normal, high school experience not knowing what to wear and all that but having Hemophilia added extra challenges.

For one, I was out sick most of grades 7 and 11. In between that I would be out for days or weeks at a time.

Grade 7 for example I nearly bled to death. My periods were out of control and I developed ovarian cysts that ruptured and bled causing me to have massive internal bleeding.

I was rushed air ambulance to the Children's Hospital where I stayed for more than 6 months.

Now I am 26 and I have no problem talking about my bleeding problem or my period, but when you are in grade 7 it's the last thing you want to talk about.

For the next 6 months I had to stay in the hospital away from all of my friends and family. I got a blood transfusion every 12 hours and countless ultrasounds, ct scans and blood work and that's not even the worst part!

While I was sick, the principal thought it would be a good idea to get all the grade 7's together and have the health nurse explain why I was in the hospital!

I was devastated. A friend of mine called me to tell me what happened and I threw up all night. I think the nurse eventually gave me a sleeping pill to calm me down.

The funny part was nobody really cared. When I got back from the hospital everyone seemed so happy to see me and didn't make fun of me or anything like that.

I still have all the cards and letters from that year. I posted them all around my hospital room and I think I had about every inch of the walls covered. The letters were sweet and funny but most of all encouraging. I couldn't believe the support, care and kindness everyone showed me and I will never forget it as long as I live.

I think having them rooting for me back home helped me get better as quickly as I did.

A reunion means a lot of things to different people but to me it's like going back to see family!

Monday, February 22, 2010

You win some, you lose some

Well I must say the last few days I have been a bit disappointed. I recently applied for the Kartik Shah Fellowship through the Canadian Hemophilia Society (CHS). The award includes airfare and accomidations to the World Conference on Hemophilia in Argentina in July.
I didn't get accepted.

I can't be upset, the people who won are wonderful, dedicated volunteers.

I did however win a contest for my blog! The contest is put on by a non profit organization called My Girls Blood check it out at www.mygirlsblood.com.

It was really encouraging for me because I have never had a blog or really even talked about my Hemophilia. It's great to know that maybe someone else out there who is struggling with chronic illness may read this and find some comfort in the fact that they aren't doing it alone.

Saturday, February 13, 2010

Here comes the bridesmaid!!

The Volunteer Appreciate event was a success! Events like that are one the only perks of having severe Hemophilia.

Another perk is the wonderful people I have met while attending Hemophilia conferences.

One such friend has recently asked me to be her Bridesmaid! I am so excited about it. I never thought anyone would ever ask me to be a bridesmaid just because I get sick at the drop of a hat and thus am not very reliable. However, the bride also has a bleeding disorder, so she understands.

With the wedding in mind, I am working on losing some weight. I have 7 months so it seems doable. I think.

You see, last year I had a severe bleed in my iliopsoas muscle. I was admitted to the hospital for two months, received 50 units of blood and was on bed rest for about 5 months.

Not to mention the fact that I was on steroids as well. All of this resulted in me gaining a bunch of weight. I can’t blame it all on my Hemophilia, I mean I did drown my troubles in food and had a bit of a pity party but the main thing is I am feeling better now and looking forward to getting into better shape.

So to do this, I’ve decided to sign up to do a half marathon, walking of course.

I've never taken on anything like this before so we'll see how it goes!

Thursday, February 11, 2010

Wine and Cheese and Hemophilia


Tonight is a big night! We are having a wine and cheese event at the Art Gallery of Calgary for our Volunteer Appreciation night for the Canadian Hemophilia Society- Calgary Chapter.

I am the Vice President of the Calgary board and we have spent lots of time planning for it!

Events like these are very important to me. I grew up in a town of 10,000 people. There was only one other boy in our community that I knew of that had Hemophilia. He was a lot younger than me and he was a boy, so I didn't really have a connection with him until now.

My family had no information about hemophilia and it wasn't until I was about 13 years old that I even heard of another female with Hemophilia.

Now, Hemophilia is a huge part of my life, it always was but it seems like I've only admitted to myself in the last two years or so. I get involved with the Hemophilia Society as much as I can, I am a youth representative for Alberta and I am on various other committees.

Last year at a women's conference here in Calgary I finally got to meet a lady with Factor 5 Hemophilia like me. It was such a wonderful experience to meet someone that knew EXACTLY what it was like to live with this condition. It was overwhelming and exciting all at the same time.

Tonight, I get to spend the whole evening with Hemophiliacs and talk and chat about life. I also get to drink delicious wine and desserts! Life doesn't get any better than this!

Wednesday, February 10, 2010

Blood. It's in you give-me!

I guess this couldn't be a blog about Hemophilia without mentioning the importance of Blood Donation.

If you do not donate blood I will die. It's as simple as that. Then you wouldn't have this blog to read! So you see it's very important.

In my life, I estimate that I have had about 2,000 blood transfusions give or take a unit or two. That's a lot of blood.

I've been getting blood transfusions since I was first diagnosed with Hemophilia in 1983 at 7 months old when my head swelled to the size of my body because of a bleed I was having in my head.

Since then I have had a blood transfusion everytime I lost a tooth, fell off my bike or had a period. So it all adds up after 26 years!

I can not donate blood. My blood does not clot properly and I do not have enough Iron so I depend on the kindness of stangers when I need blood.

I've often volunteered at Blood Donor Clinics so I know the process, you get questioned, you get a poke and then you are done!

I lie, it's not that easy, sometimes you get light headed, sometimes it takes more than an hour for your veins to produce a unit of blood and some people get quite nauseated.

But in the long run, it's worth it. You can donate every 56 days and with one donation you can save up to 3 lives. Thats pretty magical. In the time you spend playing around on facebook, you could save 3 lives, plus, the life you save could be your own!

So please please please donate blood! Please!