Thursday, October 29, 2015

Here is the deepest secret nobody knows

So, about a year ago now my Momma was diagnosed with Parkinsons disease.
It is a very frustrating, scary disease. 
I feel like my mother is slowly slipping away from me and there is nothing I can do about it.
I just got home from a two week visit with my Momma and it was so hard seeing her in pain and not doing all the things she would normally do.
My mom and I have faced a lot of hard things together, my bleeding disorder, my step father Charlie passing away and now her illness.
I think everyone can agree that moms cant be sick! They are the family rock, they are always there for everyone else and now that the tables are turned I feel helpless and sad. 
I want my momma to be happy and healthy and live to be 507 years old!
and maybe she will. 
Until our next visit together I am praying for her and educating myself as much as I can about Parkinsons disease.

Monday, October 12, 2015

Happy Thanksgiving!

So, today is Thanksgiving here in Canada and I have to say there are many many things I am thankful for.
First of all I am so thankful to god that I am healthy this weekend. I am also thankful for my darling husband Zane. He is so helpful and supportive I don't know what I would do without him. Last but not least I am thankful for our awesome friends and family. We spent the weekend with are friends and had a great time visiting with them. We also have an amazing family that we love very much.
Sometimes when I am sick it doesn't feel like it but I know we are very blessed. 
I hope everyone is having a great long weekend and that they are happy and healthy.

I've attached a picture of Zane and I and our two dogs Lily and Jade. Hopefully next year we will add to our family but that's a post for another time!

Saturday, October 10, 2015


So, I've had a lot of healthy concerns over the summer including, mysteriously dropping hemoglobin, a wrist bleed ad pneumonia twice! Now that the fall is here I am catching up on a lot of appointments. 
Last week I went to visit my dentist and my wisdom teeth are of course a concerns but my dentist seems to think that as long as I keep my teeth really clean and healthy the wisdom teeth will eventually grow in and now cause too much trouble.  I am very happy to hear this because dental surgery sounds like a nightmare to me. I also had the joy of going for a pap test. It's a test that I really really hate but it is so important to have done yearly. While I was at this clinic my doctor recommended I get the HPV vaccine, Gardasil  I always thought this vaccine was only for those under the age of 26 but it has been approved for women up to 45 years of age. 
This vaccine helps prevent against almost all HPV virus, which can lead to cancer. 
I am not an expert in this my any means but I've decided to go ahead and get the vaccine. It comes in three doses similar to the twinrix vaccine. 
Its definitely something worth talking to your doctors about. 
For more information please check out

Monday, September 14, 2015

University of Calgary Presentation

So, on Friday I have the opportunity to speak to the first year medical students at the University of Calgary. I have done this in the past and I must say I absolutely love it. I love talking about myself and I love talking about Hemophilia. I am also very happy that I can turn all the terrible medical experienes I have had into something useful!
The format is I speak for 15 minutes and then the students ask me questions for 45 minutes. I love the questions they ask its always interesting and fun.
Ive attached a picture of myself and Dr. Goodyear.
I've also attached the notes I used for my presentation.

Thank you so much for having me here today I really appreciate  the opportunity to talk to you.

My name is Ryanne McIsaac. I am a severe factor 5 hemophiliac with less than 1%.
I was born to a healthy family in a small town in Newfoundland. 
I was diagnosed at 7 months old after a bump on my head turned into  a large hematoma and 9 months in the hospital.
It was very difficult to diagnosed because My parents are healthy and I have two healthy older sisters. 
After being diagnosed I was often treated for ankle bleeds, nose bleeds and every time I lost a tooth.
For the first 30 years of my life I was treated with Fresh Frozen plasma. 
For small bleed I receive 4 units for larger bleeds I have received up to 50 units. 
I am currently treated with Octaplasma when it is available.  Octaplasma is a detergent treated plasma and is suppose to lessen the risk of blood born pathogens and reactions.
Throughout my life i have estimated that Ive had more than 2,000 units of blood and plasma and have spent more than 5 years in the hospital.
Small bleeds have included, wrist and elbows they are easy to treat with typically 4 units and don't require too much recovery time. 
The largest bleed I have had so far was when I was 12 years old, I developed an ovarian cyst that ruptured and bled into my abdomen, I was in extreme pain and I was air lifted to the children s hospital where I spent a whole year and received more than 150 units of blood. 

Recently my most medically interesting episode started in February I started to become very tired and short of breath. After visiting my family doctor it showed that my hemoglobin had dropped to around 100. 
I booked in with the Hemophilia clinic and we found that my hemoglobin had dropped again.
I had no signs or syptoms of a bleed. 

I received 4 units of red blood cells and follow up blood work revealed it had dropped again. 
I continued to be tired and short of breath. by the time I went into Emergency my hemoglobin was 55.
we tried to look for a bleed but after a CT scan a Colonoscopy and endoscopy and bronoscopy all we could find was that my lymph nodes were very swollen. luckily the biopsy came back negative but I was diagnosed with Sarcoidosis.
We never did find a definite cause but we suspect it was a bowel bleed.

The sarcoidosis diagnosis really bothered me because I started to feel like, well am I just gonna keep getting worse and worse. And Sarcoidosis is very vague. Right now my symptoms are sweating and fatigue, but again its a very confusing condition.
I really feel its important for me to advocate for myself as a patient and to know as much abut my illness as I can however I will say this is something that I find difficult. 

As a child you are taught that you must always treat doctors with respect and that they are always right and you learn that you are sick and they make you all better. So you grow to have this relationship with your doctor and its sometimes hard to disagree with them but I am learning each time I have an episode that there are ways to advocate for yourself the right way.
The other obstacle comes in when you factor in, pain, lack of sleep and pain meds. Its sometimes hard to not become frustrated and dismayed when a doctor says something you dont agree with.

I think the absolute best thing you can do as a physician is to have a little bit of compassion for the patient, and listen to the patient, I know you are taught that you are the expert ad most times you are, but have found that when it comes to rare conditions sometimes honestly the patient is the expert.

The hardest part about having Hemophilia in my opinion is the way it affects the people in my life. 
I had to miss my moms 65th birthday, my sisters wedding in las vegas and lots of birthday parties and events. 
I also hate the stress it puts on my husband, when I get a bleed I normal sneak out of bed and go on the couch and the look on his face when he finds me in pain breaks my heart. Overall it puts a lot of stress on my family and I just hate it, I wish I could just have hemophilia and not have to make the people around me suffer. 

Thankfully I have a wonderful support system in my life, my husband is very supportive, he has learned all about my condition over the years and is really a great advocate for me. 
I also have a large circle of family and friends that have helped me get threw the ups ad downs of hemophiliacs
Another thing I feel is important when coping with a disease is to meet other people who have been threw what you have been threw so I decided to volunteer with the Canadian Hemophilia Society, over the past 8 years I have been Co president of the national youth committee, President of the Southern Alberta Chapter of the Canadian Hemophilia Society  and a member of the patient advisory committee. I also have a blog called Hemophilia is for girls dedicated to raisin awareness for womans and bleeding disorders. 

Saturday, August 29, 2015

up in smoke

So, there are some fires in the us and the smoke has traveled to Calgary turning the city into one big giant campfire.
Because of my Sarcoidosis I am in so much pain, my throat is sore, my chest is sore, I can't stop coughing and I can't sleep. 
This whole sarcoidosis thing is new to me and I have to say I hate it. I don't know how to treat it and I absolutely hate coughing all the time, its loud and annoying and painful.
Anyways my darling husband brought me home a diffuser and I have to say its really helping. Ive also been using a humidifier, cough drops and lots of water.
This new diagnosis does stress me out i must say, its so vague and the symptoms can become way worse or completely go away.
Don't get me wrong, I would much prefer sarcoidosis to lymphoma, (the mimic pretty much the same symptoms.)
But at the same time I hate sweating all the time and being short of breath.
Hopefully this will be the end of chronic illnesses for me. 
In the meantime I will try and look at the bright side, I have a wonderful husband to keep me company while I am stuck in the house hiding away from the smoke.

Wednesday, August 12, 2015

Epicure Adventures!

So, since the last time I wrote I had an arm bleed and a leg bleed. They were very painful but easy to deal with and only required 4 units of octaplasma and one day in the hospital so I can't complain.
Zane also injured his knee so he has been on crutches for the past three weeks. Needless to say, it hasn't been our best summer yet but we are making it work.

I haven't blogged in a while because honestly I need a break from thinking about my illness. This summer it really started to consume me and I am praying that I will now have a few hospital less months. I have been in the hospital every month since April which has been my longest stretch of separate bleeds to date.
Anyway, switching gears to something positive I have become an Independent Epicure Consultant, which simply means I am selling Epicure. Epicure is fast and delish spices, dips and meal kits. So far I am really enjoying it. For a long time I have been looking for something that will allow me to work and my own pace and on a schedule that works for me.
I will let you know how my progress goes!

If you would like to learn more about Epicure please visit my website at

Sunday, June 14, 2015

Here we go again

So, I started having chest pain a few days ago and around Thursday I started being short of breathe so I gathered up all of my courage and went into the emergency room. I say courage because going to the emergency is nothing short of a torture test for example, it took them 11 tries to get an IV. 11 tries! My arms are black and blue and I am exhausted.
Eight hours later my CT scan showed that I have pneumonia so I am taking a course of antibiotics.
This isn't a big deal in the grand scheme of life but here's the thing that has been bothering me since February. My Hemophilia Clinic has been telling me to go to Emergency and anyone who has hung out in emergency knows that it is torture.
Id much rather go to a place where the doctors are experts, I see them right away and I don't have to wait around in a crazy emergency room for 8 hours.
But lately they've been telling me to just go to emerg and it is causing major stress for me and my family. After all, one of the main reasons we moved here is because of the Hemophilia clinic.
I can't tell you have frustrating it is to have a rare complicated disease and feel like you are being pushed away but literally the only people who equipped to take care of you.
I go to emergency and the doctors are rude, they look for blood clots they think I have factor 5 leiden which is the EXACT opposite. I explain and explain but its like it doesn't compute.
Anyways I am going for a meeting tomorrow with my clinic director so we will see how that goes but I honestly feel like it won't make a difference and I just have to take what I can get. I mean what can I really do to change it? And to be honest I'm already so tired I just want to have good care.