Rare Disease Day!

So yesterday was rare disease day which I just love because I love thinking of myself and unique and different and since there are only 150 cases of Factor 5 reported world wide I think that qualifies me as being unique!

I was reading an article yesterday about how its important to talk about the IMPACT these conditions have on people.

Hemophilia impacts every day of my life but as I get older I find myself reflecting on how it impacts the other people in my life.

Today when I called to thank my Nanny for a birthday card I realized how much my silly disease has impacted her.

I don't remember exactly what we were talking about but somehow we got on the topic of me worrying her with my illness.

She told me about the time I was in grade 7 and I called Nanny because I was in pain. She came over and I was too weak to walk so she called the ambulance to come and get me. My hemoglobin was around 50 and the people at the hospital were preparing to air lift me into St. John's. 

I was in and out of consciousness but I remember my nanny being right by my side. She was stood up smiling in the room with me in her royal blue coat. She admitted to me today that she couldn't let on how scared she was because she did't want to scare me.

All I can remember is her being there, the smell of her perfume, the comfort of her presence and I remember her taking my hand and saying, look Ryanne, you have a long long lifelong just like grandfather had and you are going to live a long life, don't worry.

I an't tell you how much that helped me when I was a kid.

When I would get into sticky situations I would look down and my hand and trace my lifeline and think of my darling Nanny.

Lately, my Nanny has had some health problems of her own and I worry about her so much. I wish I could comfort her the way she comforted me so many times over the years. Nanny if you are ever sick remember that you are amazing angel ad you deserve to me happy and healthy and I'm sure I inherited my long life line from you! 

 

Why I hate Airports

So, my momma left last night to head back to Newfoundland. My sister and I took her to the airport and we were all doing so much crying people must of thought we were insane. 

I absolutely hate the airport. When I was a kid growing up in Newfoundland my dad would come for visits and we would always have a lot of fun. The airport was always the end of the line and when I was a kid it felt like I would never see him again.

When I was teenager my mom and I had to go to the airport to fly back and forth to St. John's so I could get treatment at the childrens hospital. I would cry and cry the whole flight. Now that I live in Alberta I get to see my Dad all the time but of course momma is still in Newfoundland so I cry to break my heart everytime she leaves. 

So, thats why I hate airports.

The few times Zane and I have been on vacation I'm still so stressed going to the airport for me its a terribly sad place.

I am counting down the days until I head back to see mom and do some more crying in the airport!

Despite all my rage

The way I am feeling right now can only be described as RAGE. I think anyone with a chronic illness can relate to this stage of an episode.
For me when the pain first comes on I am sick and sad, then, I start taking drugs and my head is fuzzy and all I care about is if I have pain meds.
Then theres this stage where I am off all of the drugs so i'm agitated, I'm on bed rest so i'm bored out of my mind and I'm still not feeling 100% so its becomes the perfect combination of just plain rage.
I feel helpless and weak. I also feel terrible of the stress it causes on Zane, hes been working full time and cooking and cleaning. No matter how sick you are the laundry has to be done and meals need to be cooked. I wish I could afford to hire a maid and a cook when I am sick oh and a dog walker cause they are just looking at me like seriously? another nap?
Anyways, thats enough negativity for today. I am praying that I wake up feeling stronger and healthier. Goodnight!

1, 2, 3, 4 can I have a little more

so, I woke up today feeling so tired and groggy. Yesterday I went to the Hemophilia clinic and I was given two units of octaplasma, percocet, gravol and benedryl so I was pretty foggy and didn't really notice that I was only give two units instead of 4.
I'm trying not to get to agitated about it but I really wish I would of got the four units and then maybe Id be feeling better today then I am.
I normally get four units and it says on my factor 1st card that I get four units so I am confused and frustrated.
Getting a blood transfusion is an ordeal. It took four tries and three different nurses to just get the iv in.
I am trying to look on the bright side of things. I am so blessed that I have a hospital to go to, I am so grateful my poppa bear was able to bring me in and stay for the whole day.
I am so thankful to my awesome husband who has been taking such good care of me.
I am praying that I feel better in the morning. I am ready to put this behind me.
Good night to anyone reading.

The Hemophilia Diet

So, I think I have a hip bleed so I am heading into the Hemophilia clinic tomorrow. When I am sick and in pain I tend to eat unhealthy. Today I ate a cookie as big as my head. Maybe its just me but when I am in pain and sore I'm not in the mood for salad.
I am trying to not get to discouraged about it. Hopefully tomorrow I will get all fixed up and then I can start my gym and diet plan all over again.
I shouldn't complain because i think it been about 25 weeks since Ive been hospitalized which is an awesome stretch for me but I am in so much pain 

Merry January

So, historically January is my worst month. I don't know why I just always seem to be sick in January.
Tonight I am in so much pain from my hip. I was praying it was just sore from going to the gym but going to the gym doesn't normally cause you to be up in pain eating T3's.
T3's are a combination of codeine, acetaminophen and caffeine.
It seems cruel to put caffeine in a pain medicine. When I am in this much pain all I want to do is sleep I definitely don't want to me up watching netflix while my dogs look at me from the landing wondering why I am keeping them up.
Ideally I would like to wait until Monday then I can go to my clinic. But, if the pain continues to be this bad I might have to go to the emergency room tomorrow.
Keep me in your prayers!

New Year, New Fear

So, as a severe factor 5 hemophiliac I rely heavily on the blood system to keep me alive. There are no other treatments available for factor 5 so I receive Octaplasma, which is a detergent treated plasma and fresh frozen plasma.
If you get a chance read this article,
http://www.iflscience.com/health-and-medicine/new-human-virus-linked-hepatitis-c

I am not 100% sure what it i all about but it was posted by a member of the Hemophilia community.
Basically the article is talking about a new virus they discovered in human blood.
They are not sure if the virus causes disease or not but it is very scary to me.
Just the thought of something potentially being in the blood system scare me and should scare everyone as anyone with blood in their veins could possibly need a transfusion at some point in their lives.
I like knowing whats going on in the bleeding disorder world but without all of the information I am just finding myself a little scared.
The last time I was freaked out about the blood system was when I was in high school, I was told about how hemophiliacs contracted HIV and Hep C during the 1980's.
In response to this I refused to get a blood transfusion for a month or so. I had a bleed in my hip and left untreated the blood ate away and my muscles until I just had one little tiny skinny leg and a limp and I was in so much pain.
I was eventually sent to St. John's and treated there for a few weeks.
That was a terrible time in my life but I certainly learned my lesson. Not being treated is not an option.
Anyways, just thought I would share this article would love to get your thoughts on it!