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 http://ryannemcisaac.myepicure.com/

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.

Love and hard times

So, I thought I would take a minute to write about my illnesses that have been going on for the past two months. 

It all started with me feeling tired, I thought maybe I was depressed or something but I just felt tired all the time and then eventually it go so bad that I couldn't walk to the top of the stair es without being completely out of breath. 

I went to my family doctor, I went to my hemophilia clinic, I went to emergency, I couldn't get anyone to do anything about my illness until eventually my father came to get me and took me to emergency.

My hemoglobin was 55, I had pneumonia, I had swollen lymph nodes in my chest and I was bleeding internally so needless to say I was in rough shape.

I was treated with about 6 unit of red blood cells and 10 units of Octaplasma. 

My doctors think that I had a bleed that caused my levels to drop and then when we treated it it disappeared.

Just to be sure they did every test I've ever heard of a endoscopy, bronoscopy, colonoscopy, EKG, Chest X ray, ultrasound and two CT scans. 

Everything came back normal except the CT Scan, they think I have a lung disease called sarcoidosis which I will explain if I actually get officially diagnosed with it. 

I see a lung specialist in May to find. 

Anyways, I really wanted to blog about this because in 32 years I've never had a bleed without pain so I'm still confused about how I had such a huge bleed (enough to drop my hemoglobin 5 points a day) without noticing blood anywhere and no pain.

I find this very scary to think you could be bleeding and not even know it? 

The other scary part was the biopsy. I could tell by my doctors face after my CT scan that things weren't right and thats when they said they wanted to do a biopsy because my symptoms were consistent with lymphoma. 

So overall it was a hellish week, not to mention the terrible reaction I had to propophol, the nausea from the morphine and the joy of drinking more than 8 litres of contrast dye. 

The worst part of the week was the fact that it kept me away from seeing Della but I know she understood. She was always so understanding and respectful of my illness. She never wanted me to push myself or stress about anything especially her, she wanted me to be happy and healthy.

The following are some photos of my adventure.

1. My oxygen mask thing

2. My red blood cell transfusion

3. My iron transfusion its black! who knew?

4. A moment of rest in the busy emergency room

5. Me with oxygen 

Momma D

On Monday morning I got the call I have been dreading for a year. My husband called to tell me that my darling mother in law Della passed away. I would say, she lost her battle with cancer but I don't think she lost. She fought cancer three times in her life and I think in the end she agreed to go.

I don't want to write about it but I feel like maybe if I get out how terrible I feel maybe I will feel better but, I suspect I could write a thousand pages and still feel sad about Della. 

I met her 10 years ago when Zane and I started dating and for some reason right from day 1 she treated me like I was so special and such a blessing to have around. I loved the way I felt around her because she made me feel like I could do no wrong and that I was important.
When I think about her I picture her at our wedding. She wore this beautiful white dress and she honestly looked like a little angel. She seemed so happy that day and helped us with so much even though she had major surgery just 4 months earlier. I can't imagine the strength and courage it took suffer like she did and she did it with grace and dignity and a smile on her face.
The last time we talked she called me while I was in the hospital and asked me if I need anything! If I needed anything? She was in the hospice fighting for her life and she wanted to know if I need anything? And she asked if Zane knew, cause sometimes her and I would have small secrets from Zane just so we wouldn't worry him.
I can't believe the only person in the world who loved Zane as much as me is gone.
I could never thank her enough for raising such a wonderful man.
I will say I am not sitting here wondering if Della knew how much I loved her and I am not wondering how much she loved me. Della loved with her whole heart and I know she knew that I thought the world of her.

Happy Easter

So, this is gonna be quick because I don't have the energy to do too much these days.
We discovered that I had low iron back on March 6th. So last week I had two units of red blood cells so we were very excited to see my levels go up but sadly they went down! I don't know whats going on but I get more and more tired and more and more frustrated each day.
To top it all off all of my friends and husband are in Mexico! I am so happy zane gets to go and I pray my friends have a wonderful wedding but I just wish I could go to!
I'm having a very lonely and lazy Easter.
My hope is that tomorrow they will admit me and pump me up.
I'll keep you posted!

Secrets and Lies

So, Secrets and Lies is a TV show on ABC. It is the most perfectly named TV show since a recent episode has a character describe Hemophilia as "A nasty bi product of incest."

That is a complete lie.

When I first heard about this I was a little mad, I thought this isn't true, why would they say that and is hurting an entire community of people really crucial to the plot development of this show? 

Anyways, after a few days I tried to forget about it because as I've mentioned before I have low iron at the moment and I am feeling completely exhausted. 

But this whole thing brings up some very painful memories for me.

When I was a kid I was watching Degrassi Junior High with my older sister. I was maybe 8 years old and one of the characters was told he could possibly have AIDS. He said something along the lines of "I can't have AIDS only gay people and Hemophiliacs have that." Now looking back that was the first time I have ever heard the word Hemophilia on TV and it was mostly likely the first time I heard of AIDS and even though I didn't know what it was I knew it was bad by the way he was acting.

Isn't that a terrible thing for a child to see on TV? Isn't that a terrible thing for other people to see and maybe assume that about somebody?

That's the problem I have about this comment on Secrets and Lies, I don't need an apology from ABC I am old enough now and I have been to many conferences and I know how Hemophilia is passed down genetically.

But what I do need is for any young adults out there who have seen this show or heard of this to know that just because a person has Hemophilia doesn't mean their parents were brother and sister as it states on the show. That is just rude, uneducated and not true.

March is Hemophilia awareness month and this is a terrible reminder that we obviously as a community still have a lot of educating to do!

Coming around

So, I finally found out why I have been feeling so terribly lately.
My Hemoglobin, albumin and ferritin levels are low. Low Iron to put it simply.
The thing about low iron is that it helps carry your oxygen so thats why I've been short of breath and completely exhausted lately.
I'm so happy to finally know whats going on. It was driving me crazy.
I'm really glad its an easy fix but it does take a while for your iron to build up so I will be taking Iron pills for the next 90 days.
Iron pills aren't terrible but they are pretty gross, they hurt your stomach and make me nauseous but its much better than being exhausted from just walking to the top of the staires!
Well thats it for me I would write more but I am too tired!