Sunday, May 26, 2019

A series of unfortunate events

So I have had a nose bleed every day for the past seven days. Its not a big deal but its very annoying. At the moment I think I have an arm bleed. I think it happened last Sunday when I was trying to do some spring cleaning. I saw my family doctor about it on Wednesday and she sent me for an ultrasound. The ultrasound came back clear which is good in someways but bad because I am still in a lot of pain. I tried Celebrex to see if that would help and I tried cyclokapron and now I am on pain killers cause I just couldn't take the pain.
Zane and I are going to emergency today and I just pray that they infuse me without too much fuss. 
Thats honestly the worst part. Its not the pain, or missing work, or not sleeping or all the needles and the sitting in emergency for hours and hours. Its the dragging yourself to emergency in need of help and the doctors telling you to go home. So I am just hoping for a doctor that hooks me up!
Not a very exciting blog post but its the best I cant do for now. Keep me in your prayers please!

Wednesday, April 17, 2019

World Hemophilia Day 2019

Happy World Hemophilia Day to all my bleeder friends!
It's nice for us to have our own little day. Even though we have Hemophilia 24 hours a day, seven days a week.
Today while I was at work my tooth started to hurt, its one of my wisdom teeth that I can't get taken out because of my bleeding disorder so I just put up with it.
My knees hurt because I started going to the gym recently and a few times today when I got up to go to the printer I wondered if it was just muscle pain or if it would turn into a whole bleed situation.
Those are just some of the small things that swirl around in my head all day.
I like being at home with Zane and my dogs. I like spending time with my friends and family. The other day Zane and I went to the pool and we swam around in the lazy river and I find that in those little moments I forget about my illness, I forget about the pain and suffering and just enjoy myself.

Zane and I have been working towards something for the past two years actually it'll be three years in August. It is for sure the biggest thing we haven't taken on to date. Once I have all the details I will be blogging about it all day.
Because at the end of the day, Hemophilia or no Hemophilia we have to follow our dreams and have hope.

We have to hope for less bleeds, hope for adequate care for everyone in the world and hope for more days laughing and swimming in the lazy river.

Monday, February 18, 2019

The Long and Winding Road

So, heres what has been going on with me. Back in November I started having black stools. I went to the doctor and my blood work showed my Iron and Hemoglobin had dropped. I went to the emergency room, waited 15 hours and got 4 units of Octaplasma. I thought that was the end of it. However, Christmas eve I woke up with strep throat, another visit to the doctor showed my hemoglobin had dropped again. I went back to emergency, waited 12 hours and got more octaplasma. This exact same scenario when on again in January and February. 
So far I have had an EKG, Ultrasound and Endoscopy. Everything came back normal which is good but it does not explain why my levels keep dropping. 
So to sum it up since November I have been feeling tired and out of breath. I am getting so tired of not feeling well but no one has a magic fix. What I think is happening is I am having a small bleed somewhere in my upper GI tract and its causing these drops in my levels so I continue on with my weekly blood work and pray they start to go up.
I am forever grateful to my amazing friends and family who lift my spirits while I try and get better!

Sunday, January 13, 2019

A Rare Bird

So, I woke up New Years Day to some terrible news. My darling Factor 5 friend Dudley passed away. She was 69 years old. I spoke to her husband and he told me the awful news. I tried to listen but I just felt like the floor was sinking underneath me and I lost my breath. 
I first heard of Dudley about 23 years ago. My aunt found her online and thought she would be helpful for me. Dudley agreed to call me all the way from North Carolina. I remember the first time she ever called me I was in the Janeway hospital. I put on my robe and wheeled my IV pole to the little telephone room they had up the hall. She spoke so gently and sweet. I loved her southern accent and she answered all my questions. She taught me how to advocate for myself, how to stand up for myself even when when doctors or specialists made recommendations. 
She made me feel hopeful that I could live a normal, happy life. 
Dudley was the only person in the whole entire world who knew exactly what Factor 5 was like. We knew what each other had been threw without ever saying it out loud. 
Over the years we emailed and called often and in September of 2013 I finally got to meet her face to face. Zane and I flew to Raleigh, North Carolina for a little honeymoon and Dudley drove up to meet us. We went for lunch at a little Irish Pub by our hotel. It was a beautiful, sunny day and we sat outside. Dudley and I both ordered the exact same thing and we laughed. She was so wonderful and so full of life. I loved her so much and she meant so much to me. I wish I could of told her how much she helped me but I think somehow she knew.