Wednesday, March 18, 2015

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!

Tuesday, March 17, 2015

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!

Sunday, March 8, 2015

What the heck is wrong with me

So, here are my symptoms, I throw up at the drop of at a hat, I am tired all of the time and I am out of breath just from walking up the staires.

I've gone to my family doctor about it and I've gone to the emergency room about it. I've had an EKG, Chest X ray, IV fluids, Ultrasound, blood work and urinalysis and we haven't been able to find anything yet.

Anyone have anything like this? we've tested everything I can think of and I'm all out of ideas.

On a side note I've finished Birthday Week. It was absolutely wonderful! I am so lucky to have Zane he always makes sure I have fun no matter whats going on.


Thursday, March 5, 2015

The remedy is worse than the disease!

So, I am currently wearing a 24 hour blood pressure monitor and it is absolutely terrible. That sounds dramatic but the darn thing goes off every 3o minutes and its noisy and it hurts and my arm is covered in little red dots (petechiae).

Here is a fun fact for you, an older hemotologist once told me that back in the day they would diagnose the severity of Hemophilia they would measure the amount of petechiae or little red dots left on their arm after a blood pressure reading. If the amount was bigger than a quarter then the person was considered severe. How's that for old school?

Anyways, I'm trying my best with this monitor but I can guarantee if it wakes me up in the night I will be be taking it off. 
I wish there was a gentler way to diagnose things. I'm at the point now where even blood work leaves bruises and veins are hard to find and its just annoying. I am praying for a factor 5 concentrate and an easier way to diagnose things. 

What is your most hated diagnostic test. Mine is anything involving barium and needles.



Wednesday, March 4, 2015

Happy Birthday to me!

Wow! I am 32! I am not sure how that happened but here I am. I don't always love getting older sometimes I'd rather say I'm 28 than 32 but at the end of the day growing older is a blessing and even though I've had a lot of bumps along the way who am I am to complain? 
Well I gotta complain a little bit otherwise I wouldn't really have a blog! I am still feeling a bit stomach sick and tired but overall I feel great. I feel so blessed today to have so many birthday wishes, presents and cakes!
There was a time when I was very very sick and in the Janeway Children's Hospital for my 13th birthday. 
I've attached a picture of all the cute cards and gifts while I was there. I actually still have all the cards and letters from that time.
Anyways, Speaking of growing older tomorrow I am going to get hooked up to a 24 hour blood pressure monitor so we shall see how that goes!
Thank you for all the birthday love! I really appreciate it.



Tuesday, March 3, 2015

Poppy Priddle


Here is a picture of my Poppy, John. He passed away 2.5 years ago. It is still hard to believe sometimes I just think hes back in Stephenville reading the newspaper and listening to the radio.
My poppy was a lot of things including a very talented painter. He taught himself how to paint with oil paints and continue to do so up into his 80's. Even when parkinsons disease set in and his hands began to shake he continue to paint for as long as he could.
Today is his birthday, the day before mine and in honor of his birthday I have decided to make a book out of all of his paintings. I will start now and hopefully have it completed by his birthday next year.
The paintings have been divided up between the different family members and I'm honestly not sure how many there are but I am really excited about this project!


ANSWERS!!!!

So, remember how I've been complaining about shortness or breath and tight chest and all that? Well, today I found out my ALPHA 1 level is low. Apparently this isn't a very common test and its very specialized and all that but anyways I googled the symptoms of this and guess what they are? Shortness of breath and tiredness! All the things I've been experiencing lately so while its not great, its good to know theres nothing seriously wrong with me. For the next month I plan to pump myself up with as much vitamins and nutrients as I can and get my levels back up so I can start feeling better.
The only down side is I only found this out after talking to my hemophilia clinic, two separate family doctors and going into emergency for 5 hours. So sometimes you really have to advocate for yourself and keep on searching and trying until you get some results.
Like I said having a chornic illness is a full time job, the worst, most  painful, least paying full time job!