April Fools Day!

So, I haven't blogged in a while but you haven't missed much. I had an ankle bleed two weeks ago but now I have almost completely recovered.
My ankle bleed was very nostalgic for me. When I was kid it felt like I was always having ankle bleeds. I can remember sleeping over at my aunts house and I would be in so much pain. She would heat up towels for me and put them on my ankle to try and relieve the pain.
Sometimes I would ask my sister to sit on my ankles and I found that relieved the pain a bit. An ankle bleed to me feels like pressure building and building. It is so painful and hard to walk on or move.
Now that its over Ive been walking at the dog park to get back on track and strengthen my muscles.
The other development is my mom is going for a hip replacement. I worry about her so much being so far away. I wish I could hop on a plane every time she needed me but the reality is a trip to Newfoundland would just exhaust me and then momma and I would both be in the hospital.
On another note Zane is very very sick with the flu so I am playing nurse. He is always so great to me when I am sick so I am trying to be a good nurse.
I am praying April is a happy and healthy month for me and all of my family!

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!