Tuesday, January 17, 2017

Broken Telephone

So, I spoke to my doctor at the clinic today and she said there must of been a communication breakdown somewhere along the way because she was under the impression that I only had red skin and not a huge purple bruise.
Im honestly not sure how that could be because I feel like I communicated clearly but Im not gonna say its impossible I mean people make mistakes all the time.
So, my doctor suggested I go in tomorrow for an Ultrasound and then we can move forward based on those results.
I find the whole situation stressful and I have been eating crackers and granola bars all day. I eat when I am stressed and the lack of control of how I am treated is really bringing up a lot of stress and anxiety for me.
Thank god for the support of Zane and my friends and family.
I hope everyone has a good support system but especially people with a chronic illness.

Monday, January 16, 2017

Clinic Disappointment

So, I woke up Sunday morning with a huge bruise on the left side of my abdomen.
It alarming because I don't remember doing anything to it its big its purple and black and its growing and swollen.
I traced the bruise and today is has grown outside the line and there is a lump.
So ok in my mind Im thinking, its hot its bruised theres a lump inside, this is a classic bleed. So I call my clinic this am and they say don't even bother to come in theres nothing we can do. I have a lot of problems with this. First of all, how can they diagnose something over the phone? Second of all, why is my opinion never factored in? Why don't they think like ok, they personally think its nothing but why would someone whose had this condition for 33 years bother to call us if she wasn't seriously concerned?
If I was a male factor 8 or 9 they would say infuse over the next couple of days and call us with an update.
But because I am rare I am told to just suck it up. Why don't I deserve peace of mind? Why don't I deserve proper care and investigation?
My clinic makes me feel over and over that I don't and that I am an inconvenience because I am a special case.
I am beyond frustrated right now. I went to my family doctor and she has ordered an ultrasound but I can't get in until Friday.
At the moment I am thinking I might just go into emergency tomorrow.
Of all the terrible aspects of Hemophilia I think fighting with your clinic is pretty close to the top.
Im gonna go for a stress nap in the middle of the day but Im hoping when I wake up I feel a bit better about the whole situation because right now I want to scream!


Sunday, November 13, 2016

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.

Monday, August 1, 2016

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. 



Friday, June 24, 2016

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. 

Monday, May 30, 2016

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.