Hope

So, as you know I am suppose to be getting ready for my sisters wedding. Today is my day off and I am suppose to be going for a spray tan, getting my nails and packing up for my first trip to Las Vegas to see my darling sister get married. But instead I am making pros and cons lists and frantically calling insurance companies to see if there is anyone who will cover me. Despite everything, I still have hope. It's a funny thing about hope i find it nearly impossible to get rid of. No matter what people tell me I still have hope that things will work out for me that things will go well. Now is one of the times that I wish I could shake it. If I could just get rid of the want and desire and hope of going to my sisters wedding then I could move on with my life, focus on going back to work, focus on taking Zane to  the knee specialist today but instead I have this hope in my heart that will not let go of the possibility of going to Kelli's wedding. I guess hope is one of the only things that keep us going, without it I'm sure I would be curled up in a ball somewhere crying inconsolably. I guess when I run out of hope I know I will really be in trouble. As for now I'll just wait and see. 

The Princess Bride

So, most people tell stories about their little sisters coming into the world as a bit of a stressful time. They talk about craving their parents attention and feeling envious of the new baby. However, that was not the case with my big sister, Kelli. I don't think anyone was as excited as Kelli when I was born. My mother always tells the story about how every night Kelli would get out of her bed, walk to my nursery and climb in my crib with me because she wanted to see me. As we got older Kelli and I had our own rooms and being eight years apart she was glad to have her own space but I wanted to sleep with my big sister every night and instead of getting mad Kelli would open up the covers and let me snuggle up with her. I know it's the little sisters job to be a brat, but I wasn't just any little sister, I was spoiled rotten and I was sick so that made me think that I could do anything or have anything I wanted. Until the age of about 12 I believed that the earth did not revolve around the sun but it revolved around me. Kelli could of ignored me but instead she embraced me for who I was, she came to the hospital with me, took me to the ice cream parlour, bathed me, changed me and taught me how to read. Kelli was not only my big sister but my best friend and second mom. She took my Hemophilia in stride and never would show how hard it was on her. When I was crying in pain in the middle of the night she would go and get hot towels and place them on my legs and she spent many hours in the emergency room with me. As adults her instinct to protect me never changed. She was always there for me when I would go through a bad break up, got a bad mark in school or had a fight with a friend. I honestly don't know how I would get through life without my big sister! Now it is time for her to get married. She is marrying a wonderful man who has been a friend of the family for years and we are all very happy for both of them. Kelli's wedding will take place on November 4th in Las Vegas and it kills me to think that I will not be there to see it. I was just treated for a leg bleed and had 8 units of plasma over the past two days. My hematologist has advised me not to go because I am at risk of re bleeding and of course now my insurance is void because I have been hospitalized 7 days prior to flying. I am angry and sad about not being able to attend. I feel that Kelli has always been the one taking care of me and helping me and now on her wedding day I can't support her and be there for her. I know there is nothing I can do about it and I'm suppose to calm and accepting but inside I am so hurt. I feel like a little kid again and everyone is out skating and I am home in my room crying. At the same time I am so happy for my sister. I know her and Shawn will live a long and happy life together and the main thing is that they are together and happy and I will be thinking of them on their special day. 

Thank heaven for little girls!

So, I must say the Zoo Sleepover was a big success! I had 15 girls show up and 2 moms to help out. We had presentations, gift bags, snacks, crafts and even a bedtime story! The girls were so well behaved I didn't have to say a work to them all night, they were sweet and polite and respectful. I think I had the most fun of all to be honest. I love being around the girls I forgot about everything that was stressing me out and just enjoyed my evening and even though I slept on a rickety cot I had a wonderful sleep and I feel so good in the morning. I love walking around the zoo in the morning on our way to breakfast singing and laughing with the girls. It was a wonderful experience and I am hoping to do it again next year. Since I have been involved with the Canadian Hemophilia Society for the past four years or more but this was the first event I planned all by myself. Speaking of the Hemophilia Society, we are currently selling Christmas Cards, there are 20 in a pack with four different drawings by Children affected by a bleeding disorder, each pack is $20 with all the proceeds going to the Southern Alberta Region of the Canadian Hemophilia Society so we can plan more wonderful events like the Zoo Sleepover! 

Zoo Presentation

Hello Everyone.


I would like to say Thank you to you all for coming. I hope you have a lot of fun and learn some new things.

I would also like to say thank you to the Chaperones tonight I really appreciate you taking the time and helping me out with this event.

I would also like to say thank you to the Pharmaceutical Companies who donated very generously to this event. We will be signing Thank you Cards later on tonight for them.

Also, a special thank you to Sherri and Hulda for being here this evening, You did a great job on the presentation.

So, my name is Ryanne Radford, I am a severe factor 5 Hemophiliac. It is a Very Very Rare disease there are only 150 cases reported world wide.

I have no family history of it. I grew up in a very small town and there was not Hemophilia Society in my town and I sometimes felt sad that I didn’t know of any other people who were like me!

When I was about 12 years old I started to have a few problems with my period, so my aunt searched online for me and found a lady in North Carolina who also had Factor 5 hemophilia so I would often call her and ask her all kinds of questions about anything and everything.

Does Anyone have Someone in your life that you go to with Problems?? Raise your hand!

That’s what I would like to encourage you girls to do, if you are curious about something or would like more information ASK FOR HELP!

Who can you Contact if you have Questions about your Hemophilia?
Contact your Clinic, Contact the Hemophilia Society or Contact me. Anyone of us would be happy to help!

Having Hemophilia had been hard for me, I have had lots of blood transfusions and have stayed in the hospital over night but I have lived a pretty normal life.

I graduated from High School with all of my friends, I went to University for Four Years and Graduated with a Journalism Diploma and a Communications Degree. I currently work full time doing marketing at a Diamond Exchange Company. I am also Engaged to Zane, he is an electrician and we live in the SW with our Tiny Dog Lily. We have lots of wonderful friends and family and we both really enjoy working with the Hemophilia Society. I became involved about 5 years ago. Right now I am the Co President of the Calgary Chapter of the Canadian Hemophilia Society, so I get to plan fun nights like this, and we have Christmas Party December 5th and lots of fun Stuff like that.

Also, I am The Co Chair of the National Youth Committee. I get to Travel once a year to Montreal and we stay in a beautiful hotel and I get to meet all the youth from across Canada, We plan activities and conferences that Happen once a year.

I really think it’s important to Volunteer because it helps other people living with Hemophilia around you but it also helps you too. For example, Volunteer Work looks really good on a resume, it helps improve your reading and writing skills and you get to meet new friends.

Have any of you Volunteered in the Past?? Raise your Hand.

If you would like to Volunteer with the Hemophilia Society please take one of the pampletes on the table.

Does anyone have any questions that they would like to ask me?

If you have a question that you would like to ask privately please feel free to do so anytime.

Thank you so much for coming!







Ryanne

Catching some Z's at the Zoo

So, tomorrow night I will be sleeping at the Zoo! I never thought I would say that. I've planned a Sleepover at the Zoo for girls affected by bleeding disorders. We have about 14 girls coming and two other moms are sleeping over with me to help out. I am speaking at the event for about a half hour and I've been struggling what it is I want to say to these girls. The overall thing I want them to know that if they ever have a question, no matter what it is I will be available to answer it for them. Until the age of about 13 I had never talked to another female Hemophiliac in my life, so when I had questions about growing up with Hemophilia, no one could answer me, not my mom, not my doctor, no one. Until I got in touch with Sadie. My aunt Diane had searched the Internet for me and found a lady in the US who not only had Hemophilia but was a severe factor 5 Hemophiliac! I use to call Sadie night and day and we would talk about anything and everything, Can I get my ears pierced? Can I go into the Steam Room at the gym? She was so patient and kind with me. No matter what was going on in my life as soon as I heard her soft sweet voice on the other end of the phone I knew everything was going to be ok. I figured if Sadie got through it then I could get through it too! To this day I still keep in touch with Sadie and it is my dream to meet her one day! Being a woman is not easy and being a woman with a bleeding disorder is particularly tough bu it's important to keep a positive attitude and reach out to you family and friends around you when you need to. That's what I've been doing for 28 years an it's worked for me!
I don't know exactly what I will say to those girls tomorrow night but I hope they know that no matter how bad things get there is a wonderful, supportive bleeding disorders community out there! and I hope we don't get eaten by bears.

Tired

So, I've been feeling overwhelmed lately. Zane's appointment at the knee clinic didn't go as well as I had hoped. The plan is they will do an MRI in a week or two and then from there they will decide if it's a ACL strain or complete tear that will help them determine how long he will need to recover. The doctors best estimate right now is 6-8 weeks so of course I had to cancel Zane's trip to Vegas. I'm very disappointed and heart broken for Zane. It's hard to seem him in so much pain. In the meantime I am on my third day of working 12 days in a row and on Saturday I have the girls sleepover. Don't get me wrong I am really looking forward to the Girls Sleepover. I have been planning it for months and I am really looking forward to meeting the girls but planning this has been a lot of work, booking the zoo, contacting all the companies for funding, calling every family and inviting them by phone, buying all the supplies and it's stressful because if things don't go well it's all on me but at the end of the day I hope people remember that I am just a volunteer. Sometimes I think maybe I am spreading myself too thin and sometimes I feel like I'm not being effective. I could stop volunteering in Hemophilia which would make time for other things but I can't help but think about the fact that I may not always have a job but I will always have Hemophilia and while I am well enough I have to do as much as I can and even if its just writing silly blog posts here and there or responding to e mails I have to think it's doing some good.

When the going gets tough...

So, as you know Zane recently injured himself playing basketball. I took him to the doctor today and she said that it doesn't seem to be improving even though it has been almost two weeks. He prescribed him some new medication and he is going to see the knee specialist on Wednesday so hopefully they will be able to tell us more information as of right now, we do not know exactly what is wrong with his knee. The doctor also informed him that he might not be able to go to Vegas, which we pretty much knew from the beginning. I am very upset and disappointed about Zane's injury. I'm really not a very good nurse and I have found that I would must rather be the sick one then to watch Zane be in pain. I'm also surprised at how painful his knee injury is. I always thought of non-Hemophiliacs as unstoppable they get hurt and just get right back up again. It might take a little bit longer this time around but we will just have to make the best of it! That's what we've always done in the past and that's what we will have to continue to do!

Fall Out Follow Up

So, after all of the problems I had at the hospital in August I decided to contact the hospital and tell them about what happened. The nurse said she would follow up with the charge nurse on duty that night and the nurse on call in the Emergency room. I followed up with her about 4 weeks later and she informed me that she spoke with everyone involved and they have been informed that there was a complaint made. I don't really know how much this helps the situation and in some ways I don't feel any steps were taken so that this doesn't happen again. The person I contacted was very nice and apologetic and I truly believe the nurses involve probably do feel bad but my goal wasn't to make anyone feel bad. However, some good things did come out of it in that because of this whole ordeal we have decided to make the focus of the next National Youth Committee retreat to be about ADVOCACY. Advocacy has always been a huge part of having a bleeding disorder. You have to advocate for yourself at home, at school, in the workplace and most of all at the hospital. It's unfortunate but it's part of living with Hemophilia. I guess at the end of the day I should just be happy that some good came out of all of this!

When it rains it pours

So, last week Zane was at basketball and injured himself. He came home Wednesday night in the most pain I've ever seen him in. We took him to the doctor and they said his knee was too swollen to diagnose him just yet, an x ray showed there was nothing broken but other than that they can't tell what going on. They gave him naproxen to help with the swelling and Tylenol 3's as a pain killer but he is still over come in pain. He in on crutches and we've been elevating it and icing it. I have to say that things run much more smoothly when I'm the sick one and Zane's the healthy one. I am not as good as helping him as he is to me and it is much easier being sick myself than seeing him in pain. It absolutely breaks my heart and I feel helpless. So far Zane has had to miss three days of work and hasn't left the house. The medicine is hurting his stomach. We are waiting to hear back from the Knee Clinic at the Foothills Hospital and I am hoping and praying that they are able to help him ASAP! Despite all of this going on I still cooked us a delicious turkey dinner and today I made a delicious turkey pot pie. My friend Cheryl came over today to cheer me up and do my hair. I must say a little company was so nice for both Zane and I. Since today is Thanksgiving I must say I am very Thankful for all of our friends and family and especially Zane and Lily I just wish we could be a little bit healthier!

Yoga for Corey

So, I received this e mail today from one of my Hemophilia friends on behalf of Corey a severe Hemophiliac. I hope you take a minute to read and find out how you can help!

 I am writing you this letter because I will be starting a 200 hour, yoga teacher training program this fall and I would like your support.> > This is an accredited ‘Yoga Alliance’ program taught by one of the> > most skilled and recognized yoga instructors in Portland, Oregon,> > Tiffany Cruikshank (http://tiffanyyoga.com/). This training will cost> > $3,490 and I will need assistance and sponsorship to make it happen.> > > > I am 25 years old and I have been practicing yoga for the past two> > years and over that time I have realized considerable health benefits.> > I am pursuing this accreditation to further my understanding of yoga,> > and to teach and inspire others with blood disorders. On a deeper> > level I am doing this training to contemplate, appreciate, and find> > acceptance for my own body.> > > > As you may be aware, I have severe hemophilia and as a result of this> > disease I have sustained more injuries than I can possibly count,> > leading to arthritic joints. I realized at a young age that I needed> > to do something to try and stop the cycle of injury but it was a> > struggle figuring out what exactly I should do. After little success> > with stints in swimming, cardio, and weights, I opted to have a> > surgical ankle fusion performed in January of 2009 to alleviate> > chronic ankle pain. At the time, the pain in my ankle was making it> > extremely difficult to do anything aerobically. To rehabilitate from> > this surgery I decided to try yoga in hopes of regaining muscle in my> > atrophied leg. Not only have I been able to bring strength back into> > my leg, but I have been able to significantly decrease the number of> > injuries I sustain even though I am considerably more active now.> > > > Yoga has also been an extremely valuable tool for maintaining my> > psychological well-being. Graduating from college into a recession was> > very difficult but I was able to remain balanced and bring meaning to> > my life while I searched for work by challenging myself in class to> > improve my ‘asanas,’ or poses in yogi speak. I feel strongly that I> > eventually found work, in part, due to an optimism that would not have> > been there without yoga in my life.> > > > Since beginning my yoga practice I feel as though, for the first time,> > I may be able to live a long and healthy life. It is because of this> > that I feel so strongly that yoga needs to be taught to everyone with> > blood disorders. While interning with Bayer Heath Care (Bayer> > Pharmaceuticals) I developed the idea for “Living Fit: A Joint Effort”> > (http://www.livingwithhemophilia.com/webapp/livingfit/), a program> > designed to encourage and give instruction on safe physical activity> > for kids with hemophilia. I am proud of having had a hand in this> > program, but there is much more that needs to be done to help people> > with blood disorders live long and healthy lives.> > > > Upon graduation from this program I hope to begin teaching and sharing> > what I have learned to people with blood disorders young and old. I> > will do this through summer camps for the young and support groups for> > the old. When my training is complete I look forward to sharing my> > knowledge at the 2012 Hemophilia Foundation of Oregon Summer camp. In> > following years I would like to visit the surrounding states summer> > camps to teach. While there are many people who have championed the> > practice of yoga for hemophiliacs, most of them have been nurses,> > doctors, physical therapists or other health professionals. As a> > living example of what yoga is capable of, I believe there is a great> > deal of value in the message being delivered from someone who has> > lived it. I hope to inspire and encourage in a way that health> > professionals simply cannot.> > > > I have sent this letter because I believe you may be able to help me> > in this pursuit. Any donation would be a huge help towards this cause.> > If you are willing to support my education please respond to this> > letter and I will put you in contact with those responsible for the> > training. You may also contribute via the following website:> > http://coreyyogatraining.chipin.com/yoga-teacher-training-for-corey> > > > Sincerely,> > > > Corey> > > > > > http://coreyyogatraining.chipin.com/yoga-teacher-training-for-corey.