News

So, this post is to let you know about the new and exciting things that are coming up for the Canadian Hemophilia Society.
The new strategic plan that the organization has adopted for 2011 will focus more on international relations which means helping those around the world who can not afford medicine and factor.
I am so excited about this as this is an issue that has been bothering me for quite some time!
I would also like to bring attention to the article I wrote in the latest newsletter http://www.hemophilia.ca/files/HT%20MAR%202011%20FINAL%20(for%20web).pdf
In this publication you will also find TWO pictures of me and and article where I am called "young" and "ebullient".
All in all a great issue of the newsletter if I do say so myself!
Please take a few minutes and read! Let me know what you think!

Resources

So, lately I have been getting a lot of questions about what to do when you can not afford product. It shames me to admit it, but I did not realize that this was such a problem but I have to say that it breaks my heart to think about someone having a bleed and not being able to afford product.
Currently, I am trying to figure out a way I can help whether it be raising more or setting up a product share program in Canada.
In the meantime the following links are places you can go for help and information when it comes to dealing with Hemophilia.
http://www.hemophilia.ca/
http://www.saveonelife.net/
http://www.kelleycom.com/
http://www.wfh.org/index.asp?lang=EN

I hope you find this information helpful! If you have any questions please leave me a message and I will do my best to answer! If you would like to make a donation to this blog, the money will go to helping people in developing countries with Hemophilia, please click the Donate button and following the instructions.

Drugs, Drugs, Drugs

So, as I have been writing about before, I spent the weekend in the hospital with a leg bleed. It's feeling a lot better now thank god and I am not taking any pain meds. However, before I went into the hospital I was in a lot of pain and when you are in pain you don't sleep and when you don't sleep you don't think logically and when thus I took way too much pain medication. When my Hemophilia nurse read my chart and found out what I had been taking she was very alarmed. She told me about a Hemophiliac who was having a bleed and happened to have some left over pain medication from a previous bleed so he decided to take some. When you take pain medication it can cause breathing problems so this Hemophiliac stop breathing and died. All because he took too much pain medication. I couldn't believe it when she told me. I thought you could only overdose from taking tons and tons of pills and illegal drugs and alcohol. I didn't think you could die from take one or two pain pills.
So from now on instead of taking pain medication I am going to wait until I am in a hospital under proper supervision!

It's my blog and I can complain if I want to

So, I spent the weekend in the hospital. I got out yesterday and today I still feel agitated and irritated by the whole situation.
First of all when we got to emergency we waited in not one, not two, but THREE separate waiting rooms! Then every time they called Ryanne Radford I would go up to them and say yes, and they would keep calling Ryanne Radford! whats up with that? I mean I know Ryanne isn't a traditional name but Calgary is a city of one million people they must of come across some crazier names then that!
Anyways after a two hour wait and getting moved around my doctor says we are going to give you apheresis plasma because its safer. So right away I get my back up because I have never heard of this type of plasma and when it comes to blood I don't want to take any chances. Anyways after that was all strengthened out I was given so much drugs and plasma that all I wanted to do was sleep, but sleep at the hospital was nearly impossible. First of all my room was right across from the cleaning ladies room or something and all they did was chat super loud the whole night until I had to get up out of bed unhook my IV and ask them to be quiet.
Once I finaly fell asleep various nurses came in to check my vitals and the lab came in at 4 a.m. to check my blood.
So needless to say I got to sleep. By the time the Hemotologist came in to see my I was so wound up I told her I refuse to stay any longer in the hospital longer and almost refused further treatment until she calmed me down with some ativan.
The only things that helped my experience was a visit from Zane and my Dad and Extreme Will Power & Total Motivation Self Hypnosis.
Othen than that the whole thing  was a complete nightmare and it's still taking me sometime to unwind from it.
I feel like our health care is not good enough. I know it could be worse and all that but our health care system is not great and I don't understand why? What could be more important than our health care? I think everyone should have to get a blood transfusion and stay over night in the hospital just to see what it's like! I have a theory that if that happened we would have a much different health care system!

Weekend away

So, I am writing my first blog post from the hospital. I came into the hospital today with severe pain in my left calf muscle. So far I have had hydromorphine, percocet benadryl and 4 units of plasma! I have no idea how I am still awake! I am relieved to be in the hospital and on my way to getting better but I must say I am depressed to have to be spending my long weekend in the hospital. All of my friends are out tonight and I was suppose to be there and Zane and I were going to go out to celebrate out 5 year anniversary. I guess I shouldn't be that upset, this is by no means the first time I have sat out on fun events but I guess no matter how many times it happens it still hurts. I also don't have as much family and friend support here in Calgary. And the fact that I still do not have a job doesn't help anything either. I guess I will go and have a Dixie cup and hope that things look better in the morning!

Carter's Quest for a Cure!

So, Carter is a beautiful little boy with severe Hemophilia. He and his mother Jenny are on a quest to cure Hemophilia. To get the ball rolling we are organizing an event called, "Mall at the Hall." Ten of your favourite vendors all in one community hall! There will be games and face painting for the children, baked goods, crafts and lots of shopping! Please join us on April 9th, Saturday, 2011 at the Glenbrook Community Hall in Calgary, Alberta at 10:00 a.m.
Please click on the following link for more information. Also, please feel free to contact me if you would like to get involved!http://www.facebook.com/event.php?eid=129128837156503

Happy Saint Valentine's Day

So, today is Valentine's Day! I love valentine's day! I know a lot of people hate Valentine's day because they are single or whatever but I think that is foolish. I think society makes people feel like they have to have a boyfriend to feel special and it's all about how many roses or chocolates you get but I always thought of Valentine's day as a day to tell people you love them, whether it be your friend, boyfriend or parent. I have been very blessed over the past six years to be with Zane because he always gets me a beautiful card, chocolates, flowers and a gift! This year he got me Tuneband for iPhone 4, Grantwood Technology's Armband, Silicone Skin, and Front and Back Screen Protector, Black and chocolates and lilies and a delicious supper! I am very spoiled I must admit but it wasn't always like that for me. I spent one Valentine's Day in the Health Science centre in St. John's where I spent two months for a major hip bleed. I've also spent Valentine's day in the hospital in Stephenville, so it hasn't always been a bed of roses.
Anyways, I think on Valentine's Day you have a choice, you can see it as a day to tell people you love them or you can see it as a sad pitiful day.
I love it and not matter how bad it has been at times I love little cinnamon hearts and writing out Valentine's cards!

Happy Blog Anniversary to me!!

So, one year ago this month I started my famous blog, Hemophilia is for Girls! I love having a blog, it is a lot of fun and therapeutic for me and hopefully it will continue to raise awareness about Women and Bleeding Disorders.
To date Hemophilia is for Girls has 71 Followers and 75 posts.
The top 5 countries that read Hemophilia is for Girls are Canada, USA, India, Ukraine and the United Kingdom.
Also, I have helped start Generation Clot http://generation-clot.blogspot.com/.
My blog is also on Twitter at Ryannesiobhain, you can find it on My Girls Blood http://mygirlsblood.org/ and on the Canadian Hemophilia Website http://www.hemophilia.ca/.
My blog also won a contest through My Girls Blood for $50 and Google has sent me a coupon for $100 to use towards advertising for my blog!
All very exciting stuff for me considering I had no idea how to create a blog a year ago but Blogger has been very easy to use!
Thank you to everyone for reading! I really appreciate it! Here`s to another year of blogging!

Responsibility!

So, the other day I called my pharmacy and asked them to fill two prescriptions for me. I take medication on a regular basis so I depend on my pharmacist to have my medication and to tell of possible side effects. So when I showed up today to pick up my prescriptions I assumed they would be in the bag that they passed me. I arrived home only to find one of my two needed prescriptions. I decided to phone them and see what happened. He told me that they didn't have my medication in stock. Information that would of be great to know on Thursday when I first called. If they would of told me up front I would at least had a chance to get my prescription filled elsewhere. I called the pharmacy guy who didn't really seems to care. So I called the manager who also didn't really seems to care. I plan on calling their corporate office on Monday and I will also be changing pharmacies. But a big company like that doesn't really care. If they loose one customer it makes no difference to them. I guess at the end of the day it's my responsibility to ensure I have lots of medication on hand even though most health care plans will only let you have prescriptions once per month. I guess I will have to start keeping a little stash of pills for when the pharmacy screws up!  

Bleedy Swan

So, I am watching Black Swan and it reminds me of my dancing days! When I was a little girl my grandmother signed me up for dancing lessons, I took one class, got a bleed and was never allowed to go back!
I was very disappointed at the time but dancing was probably not the best activity for me.
This pattern has happened over and over throughout my life. I try something, I get a bleed, I quit.
I keep getting back up and trying again but lately I have been wondering how many times and I get back up smile and try again?
The only thing I can be sure of is that I will get sick again to some capacity and I must admit it is discouraging.
Never the less, I am currently job searching for something in my field. I would love to work in something to do with Hemophilia, sadly, there aren't a lot of jobs in this field. For now, I will keep volunteering and try to keep a smile on my face!

En Francais Sil Vous Plait!

My blog! Now in French!
Yes I have completed years and years of french immersion but I don't use it a lot so don't expect a lot of french posts!

Nous sommes fiancés depuis cinq ans et il est maintenant temps de commencer à planifier le mariage!

Je planifie mon mariage depuis que j'ai 12 ans. Je sais exactement ce que je veux : un gros mariage à Stephenville, Terre-Neuve, avec un repas gargantuesque, beaucoup de vin, des fleurs, et tous mes amis. Le seul problème, c'est que l'organisation d'un mariage est très stressante et que Zane et moi sommes préoccupés par mon état de santé. Un voyage à Terre-Neuve serait une épreuve difficile pour ma santé et avec le stress d'un mariage en plus, nous craignons tous les deux que je puisse être malade. L'autre problème, c'est le budget. Les mariages coûtent tellement cher que j'ai dû diminuer mes attentes face à mon mariage. Je pourrais raccourcir la liste des invités, commander moins de fleurs, mais j'ignore complètement ce que je devrais faire pour préserver ma santé! Je mange sainement et je prends beaucoup de vitamines, mais rien ne garantit que je serai en forme le jour de mon mariage. Zane a proposé de faire le mariage Calgary. Ainsi, si j'ai des problèmes de santé, toute mon équipe médicale est ici. Par contre, mon cœur est à Terre-Neuve! J'y suis née et j'y ai été élevée, et je crois qu'il est tout à fait approprié que je me marie à Terre-Neuve. Comme de nombreux hémophiles, j'ai appris à la dure qu'on ne fait pas toujours ce que l'on veut. Pour ce qui est du plus beau jour de ma vie, je crois que je devrai m'assurer que mes amis les plus proches et ma famille sont présents et que je profite au maximum de la journée, peu importe l'endroit ou le moment!

Generation Clot!

So, as you may know I am the co-president of the National Youth Committee. Our goal is to raise awareness about bleeding disorders. Recently, we have decided to start our very own blog aimed at youth and youth issues! Please take a minute and check it out at http://generation-clot.blogspot.com/
I hope you enjoy it and look forward to hearing your feed back!

Save One Life

So, I was talking to one of my wonderful Hemophilia friends in India. He said he was having a bleed in his knee, so I said well you better infuse right away.
He told me that product in India is very expensive and he is only able to use product when it is an emergency. In the case of the knee bleed he uses, rest, ice, elevation, compression which is great, but should not be used in place of product.
Our conversation really bothered me. I hate the fact that all Hemophiliacs do not receive the same level of care just because of money.
The next day I found that I was still upset over this and felt almost depressed about it but I felt there wasn't anything I can do about it.
I was very wrong.
Save One Life is a program set up to help Hemophiliacs of all ages who do not have access to adequate health care.
The cost is only $20 a month and can make a huge difference in the life of a Hemophiliac!
You can read more about it at http://www.saveonelife.net/.
Please think about it!