I have tried in my way to be free

So, when I get stressed out I either blog alot, or not at all. And I haven't been able to bring myself to write for a while now. Ive just had so much on my mind. I worry about my mom, I had an ankle bleed and I had a nose bleed on an off for 7 days. Not much fun at all. But I am getting the house ready for Christmas and Christmas always makes me happy and hopeful.

It's a good life if you don't weaken

So, Zane and I went to see the last hurrah for the Tragically Hip. It was an awesome night, 20,000 people packed into the Saddledome bobbing along as Gord Downie sang his swan song.
I was so happy to be a part of the whole thing as The Tragically Hip seems to have been playing in the background my whole life. I first heard of the hip when I was 9 years old. My older sister and I were visiting my father in Edmonton and had lined up tickets for us to all go to the show. It must of been the long flight from Newfoundland or all the shopping around but I ended up with a bleed and spent the night of the show in the emergency room getting a blood transfusion. My sister Kelli said it was the best show she ever saw and came home with a t shirt. I was jealous of course but I got my chance to see them when I was in Grade 11 when they toured Music @ Work. It was the first rock show I ever really saw and they were one of the few big acts to come to our little tiny part of the world.
My third year university they came to Cape Breton, Nova Scotia and I got to see them again. I've seen them through many different stages of my life and it was so nice to see them again tonight with my husband for our third year wedding anniversary.
Of course, we were shocked and saddened when we heard this would be their last tour and that Gord was sick with cancer.
We were shocked and saddened when Zane's Mom passed away this time last year also of cancer.
 I don't think you could throw a rock without finding someone affected by this terrible disease. I wish there was something we could do.
If only clapping hands and waiving lighters could cure cancer.

Newfoundland Adventures

So, Zane and I just got back from 10 days in Newfoundland. It was quite the world wind tour, we went to a stag and doe, stood in a wedding, visited my mom in the hospital, took her home on a two day pass, visited with family and friends and did a bit of shopping. 

My heart is always broken when I come back from Newfoundland. I cry all the way to Toronto every time and even have a cry or two a few days before we are set to leave.

This trip was especially hard because I am worried about my momma. She just got out of the hospital after spending three months there for a hip replacement. She worked so hard in physio and has been in a lot of pain over the past three months. It was so nice to see her recovering and return to her home. She is so happy being home with all her memories and her family and friends just minutes away. I do worry about her though being home and dealing with Parkinson's. My mom and I have spent our entire lives together worrying about each other. Me with my Hemophilia and now her with her Parkinson's disease. Just like she couldn't stop or control my bleeding I can't control her Parkinson's and its progression.

All I can do is help her when she asks and pray for her health and happiness. 

I do love living in Calgary I love the great health care and our home and dogs and family and friends but I think a little piece of me will always be in Stephenville, Newfoundland. 

Top of the world

So, today Ive been listening to Top of the World by Patty Griffin. Its my favorite song in the whole world. Its also a very sad song. I've been feeling really sad lately and tired. Ive had my period for 6 weeks, my moms been in the hospital for 9 weeks and theres been a few other ups and downs for me and my family. I'm getting a bit stressed worrying about everything and ive found myself putting the milk in the cupboard and the olive oil in the fridge and all kinds of silly little things that I do when I am stressed. I wish I could take everyones aches and pains away and I wish I could fix everything but I just can't and Ive realized that worrying about it doesn't help either. Ive been trying to distract myself and keep busy Ive been walking the dogs and going to the gym. On a side note, I wish I was one of those people that lost weight when they got stressed but alas I am not, I am the type that gains weight.

Anyways, Im trying to stress less and trying to just have faith that everything will work out in due time.

In a a way I guess I am lucky that I have all these wonderful friends and family members to worry about. I am blessed that I have so many people that I love and when they hurt I hurt. I hope they know no matter how far away I am or how long its been since ive seen them they are always in my thoughts and prayers.

I don't have a picture of my entire family but here is a picture of me and my Priddle family at our wedding in 2013. 

Breathing a sigh of relief

So, today I had my chest X Ray and Doctors appointment with my pulmonary specialist. My X Ray showed that there are no more signs of Sarcoidosis in my lungs and my lymph nodes are no longer swollen. I am so happy to get this news because one of the last things I needed was another weird disease. 

I don't need to go back and see my doctor for another year and if I stay healthy hopefully I will never have any lung issues again.

Hemophilia and bleeds is something I am use to but lung problems are terrible I must say. Not being able to take  deep breath in and having a tight and sore chest is such a terrible feeling. 

I think staying happy and stress free is an important part of staying healthy and one thing I find that is good for relieveing stress is cooking.

Today I made a giant pot of soup. I like making soup because you can jut throw everything in a pot and it creates this delicious mix! Its also big and good for sharing incase you are lucky enough to have family or friends visit. 

May ramblings

So, Ive started to go to the gym 3 times a week. Ive been doing it for the past 4 weeks and I must say I feel a lot better. To my dismay I haven't lost any weight but I must say I am feeling better and I am excited to see how long I can go without a bleed.
I know that the stronger and fitter I get the healthier I will be but it seems like ive been on a diet my whole life and ive always been unhappy with the way I look but if I can get the amount of bleeds Im having down that will take care of one of my worries!
Ive also started gardening which I love a lot. I can't do a lot of it as I find it hard crouching over and lifting soil and I can't say I am particularly good at it but it is fun.
In other news, I am going to see my lung specialist tomorrow for my 6 month check up. Last April I was diagnosed with Sarcoidosis so these appointments are to keep a eye on things. My last appointment showed that it was almost completely gone so I am praying tomorrows x ray shows the same thing.g
I hope everyone is having a great spring and hopefully I will continue to get stronger!

April showers bring May flowers

So, I haven't written in a long time. I feel like I haven't done a much of anything lately.
My mom has gone in for her hip replacement and has been in the hospital for the last 5 weeks. When I am in pain or hurting I can complain and move on but when my family is hurting I find it paralyzing. I don't feel like talking or writing or socializing.
Ive started a part time job which I love so much. The people are great and it is a wonderful distraction.
Lately my mom has been feeling a lot better and I suspect she will get out of the hospital within the next 2 weeks.
I guess I need to let go and stop worrying about me just like she had to do with me when I grew up and moved away.
It is for sure easier said than done!
When I am not worrying about my momma I've been gardening and I must say it is such a lovely hobby. I highly recommend it.

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!

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!

Happy New Year 2016!

So, we had a wonderful New Years Eve. We had a beautiful four course meal at the top of the Calgary tower with some great friends. 

Of course every New Year I like to reflect on the past year and all I can think of is Thank God we survived it. 

In 2015 we bought a house, moved across the city, got a new doggie, I was hospitilzed several times and we lost one of the most important people in our lives. 

Not much you can say or do when your heart breaks like that. We think about her every day. Sometimes I still think, I have to talk to Della about this. 

There is a lot of pain that I hope we leave behind in 2015 but of course I know life will have new challenges for us, I just pray we are stronger and wiser when we face them.

For all of my Hemophilia friends I hope you have less bleeds in 2016 and a healthy and happy new year. 

My goal is to stay healthier than I was last year so ive joined the gym and started a healthy eating program.

Best of luck to everyone and their resolutions!