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. 






Sunday, July 29, 2018

Summer Skin

So, I've been a terrible blogger over the summer. But I had a recent hospital visit so I thought I would fill you in on that. I started having blood in my urine about a week ago. I went to my family doctor and he suspected a urinary tract infection so I started a course of antibiotics. A week later I was still peeing blood so my Hemophilia Clinic advised me to go to the emergency room to get some plasma. 
I left work, came home and got my hospital bag and headed to the foothills hospital. The emergency room is always intense. There was a lady next to me in agony, she eventually yelled out that she was in labour and someone finally whisked her away in a wheel chair. There was another guy sitting there just shaking. His friend that he had with him looked so scared. I just sat there eating my muffin cause I let myself eat carbs when Im in the hospital so I take advantage of that a bit.
I eventually got hooked up and then set home 12 hours later. By the 3rd unit my urine had cleared up and I have been feeling much better ever since.
I have a picture of my urine it is completely red it looks like wine. I was going to post it but Zane said I should stop showing people pictures of my urine.  
As far as bleeds go, that one was pretty uneventful so I feel lucky to have it over with.
In other exciting news Zane and I have booked a flight to Maui in October. The fun thing about having hemophilia is stressing about what will happen when you get a bleed in other places. I got in touch with the Hemophilia Clinic in Honolulu and they gave me some great advice. Zane and I are really looking forward to our trip. Now all I have to do is stress about losing weight and Im all set!
I hope you are all having a happy and healthy summer!! 

Tuesday, June 5, 2018

201-266

So, it was the Janeway Telethon the other day. The Janeway is the Childrens Hospital in St. John's, Newfoundland. They raised more that 3 million dollars for the hospital. Seeing the telethon all over facebook reminded me of the year and a half my mother and I spent it the Janeway. I always say my mother and I because she was by my side the whole time and I'm sure felt everything I was feeling. 
That time in my life was  by far the worst time in my life. When I was younger I would always think about how hard it was for me but I never really realized how hard it was on my whole family. My dad flew out from Fort McMurray and spent months with me, my sister came out and stayed in the hospital bed next to me for a few weeks. My aunts and uncles drove 9 hours across the island to bring me teddy bears and toys. My friends called me and sent me get well cards I think every room in my room at the hospital was covered in cards and I had so many teddy bears we had to carry them out in garbage bags when I was finally released. I still have my hospital bracelet from that time and I still remember my Janeway number it was 201-266 and I was on unit 2B.
The telethon also made me think about the bad times. The first time I was admitted it was at night time. A sweet nurse came in and asked if I ever had morphine before. After 5 tries they got an IV in and they gave me morphine for the pain. I put my hand out and told my mom to hold my hand because I felt like I was floating up off the bed. The next day I couldn't pee, a side effect from the morphine so three nurses held me down while a lady named Jean inserted a catheter. To this day that was the worse procedure I ever had. Anyways, I was then admitted to the constant care room. There was an extra bed for mom and a little nurses desk right in my room. Someone was there 24/7 and I remember being in and out of consciousness. The next few weeks I was pumped with plasma, antibiotics, pain meds. I got x rays, CT Scans, an MRI and worst of all a barium enema. Barium is this thick white substance that taste like grated up chalk. If it wasn't being pumped into me then I was forced to drink it. One time mom felt so bad for me trying to choke it down she drank some of it for me just to get rid of it. 
Somehow after all of that I survived. I lived to tell the tale of the wonderful nurses and doctors who cared for me and supported me and my family during that very difficult time. I am so grateful that Newfoundland has such a great hospital like the Janeway. 

You can learn more or donate here http://janewayfoundation.nf.ca/ways-to-give/

Wednesday, April 18, 2018

Nanny

So, My Nanny is turning 90 years old this month! My two sisters and I are travelling to Newfoundland to celebrate with her. I looked at several different stores but I still haven't been able to find a 90th Birthday Card. But that's the wonderful thing about my Nanny, she doesn't want a fuss made and she will appreciate just having her family around her. She isn't overly concerned with presents and gifts.
I was lucky enough to grow up just 5 minutes away from Nanny. I actually lived with her for a whole year when my mom and dad first got a divorce. My nanny took over when my mom was working a lot. She cooked and cleaned for me and my sister. She taught us how to cook and took me to my first brownies meeting. My nanny has 5 children, 13 grandchildren and 12 great grandchildren but she always makes time for each one of us and makes us feel special.
Growing up I had a lot of health problems and my Nanny always had a way of making me feel better. For a sore throat she would make me honey, lemon and ginger tea. If I had a bleed she would let me have a sleepover with my cousin Sara and we would make our famous peanut butter and gum drop rice krispie squares. 
Nanny had a special remedy for everything and always managed to make me feel better no matter what. She has been a huge source of strength for all of us. Each grandchild has their own special memories of her. My sister would love it when she would take her for chips and pop and they would sit by the ocean and snack and chat.
I always loved how cool and calm she would be when she visited me in the hospital. She would come in with a bag full of snacks and her navy blue coat on. She could poke her head in at the desk and find out which room I was in. I could always see her from across the hall and I would breathe a sign of relief when I saw her coming because I felt like everything would be ok.
I pray my Nanny has a great birthday. I hope she knows how loved she is and how grateful we are for her! Happy 90th Birthday Nanny!