Patient Perspective Presentation

So, I had the honor of speaking to the group of nurses today at the South hospital here in Calgary. 

It was so nice to speak to them and share my crazy medical history.

Anyway I had to do a lot of writing and a lot of talking so I thought today I would just show you some pictures of my life along the way!

When it rains it pours

So, I left work on Friday a bit early because I was so sick with a cold. By the time I woke up on Saturday Zane and I were so sick. We were coughing and sneezing and achy it was awful.
Around Monday Zane started to feel better but I woke up with such a sore chest, i thought I slept funny or maybe it was just sore from all the coughing.
As the day wore on I could not take the pain. I took some painkillers but over time they became less and less effective.
I decided to go into the emergency room on Tuesday morning. I called my Hemophilia Clinic and they said the best thing to do would be go to Emergency.
So I'm writing this to try and convey how brutal having a illness can be its not the pain, its not getting an IV its not even the time wasted necessarily its the trying to convince doctors you need treatment.
Ok so when you walk into Foothills Emergency you have to line up to see Triage so I stood there for a while but the pain was just too bad so I sat in a chair just off to the side while I waited.
When it was my turn the nurse said why couldn't you just stand there? And I find that so strange like why does it matter to the operation of this hospital if I sit or stand? And it bothers you that much that you have to confront me about it? Anyways moving on, we see the emergency doctor and right away hes dismissing me. He orders an X ray, Ultrasound and EKG, they all come back normal which I knew they would because I have a bleed in the muscles of my chest wall I didn't think for a second my heart was involved.
They then park me in a wheelchair in the middle of the hallway for about two hours. The doctor comes over and says I am free to go so I say to him look I have a bleeding disorder I need plasma. He calls the Hematologist on call and they also say I can go home so he comes back and says I can leave. We explain to him that again I need blood I know what a bleed feels like this is a bleed.
Its so infuriating to have to fight for treatment every. single. time.
I eventually got my plasma and Zane and finally got to go home after 9 hours.
I use to have a treatment room in the Hemophilia Clinic where they could treat me but it no longer exists. The place for me is not in emergency but there is no where else for me to go.
Its very frustrating being rare and having this illness but having to fight for treatment on top of it is too much.
I am so thankful Zane was able to take the day off and come with me and fight with me. Sometimes it feels like im going crazy and its nice to have someone to hold onto in the chaos.

Miss Jade

So, Ive been on a roll lately with blogging so I thought I would tell you about June. I already wrote about the robbery in July. So here is what happened the month before.
We have had Jade our little Chiuaua mix for about 7 years. She was my brother in law Blazes dog, then when he moved out she was Della, Zanes moms dog. When Della moved into the hospice in Okotoks she asked that Jade be brought down here to Calgary to stay with us.
Poor little Jadey cried and cried the first few days she was with us. I honestly didn't think it was going to work out. Over time she grew very attached to Lily and eventually me and Zane. Now she is my girl. She waits for me at the door when I get in the shower and she follows me all around the house. One night she started coughing and even woke Zane and I up a few times. She had done this before and I had taken her to the vet about it. He said that she just has a small esophagus and not to worry about it so when it started again I assumed it was that or maybe kennel cough or something.
Zane and i decided to bring her to the vet hospital and by the time i got her in the door she was hyperventilating the nurse grabbed her out of my arms and took her in the back. I knew that couldn't be good but I was trying to stay positive.
A little while later the vet came out and took us to a private room. She said that Jade has a collapsed trachea and that we may have to put her down.
I tried to stay calm as I discussed the options with the vet but eventually I just broke down. I couldn't picture not having our little girl with us especially since she was only about 7 or 8 years old.
We decided we wanted to try and save her so the vet said they would put her on meds and oxygen and see if they could get her airway to open up more. They told us to come in the back and say goodbye.
We walked in the back of the hospital and saw our little Jadey in an incubator she was lying down and breathing very heavily. As soon as she saw me her tail started to wag and tried to get up.
I can't write much more about it because I will start to cry again and not be able to stop.
Anyway Zane and I said goodbye and went home and waited and waited for 12 hours!
At around 9 pm at night the Vet called and Said Jade was improving and we could take her home. It was honestly the happiest call i ever got. we picked her up and kept a close eye on her. She improved bit by bit and today she is doing great!
After everything that happened this summer with me being sick and everything I can honestly Jade being sick was the worst. I felt so helpless.
I am so happy to say she is doing well and we are curled up still watching Christmas movies, still sick with the flu but happy to be all together!

Aftermath

So, after the dust settled, Zane and I realized that they had stolen our TV, two laptops, my purse, Zane's wallet, his shoes and all of our keys. We were still in shock but had to quickly start the process of having our locks changed, contacting our insurance company and all of that fun stuff. 

Our family and friends were very supportive my Dad came over right away and helped me make notes and keep track of everything.

Our friends brought over food and were very supportive. 

My bff Cheryl even paid for our supper as the robbery took place two days before our wedding anniversary. She is always there when I need her and she continues to be my friend through this crazy journey of having a chronic illness even though sometimes I am not easy to be friends with.

Anyways, We were robbed on Thursday and then the following Monday I went for a Capsule Endoscopy because of course your illness can't stop even for a robbery, so my Dad took me to the hospital and I swallowed this really big camera shaped like a pill. I had to wear a recorder on my waist and my nurse said she could see blood in my stomach before I even left the office. 

This started a long and exhausting process of Gastrointestinal bleeding, plasma and IV iron. Lots of exhausted days, iv, weekly blood work and tests. 

I will write all about that next. For now I am fighting the flu so I am hopped up on Cough medicine watching Christmas movies and cuddling with my pups!

I hope if you are reading this you are safe and happy and healthy. Thank you for reading!

The not so friendly invasion

So, In July, two days before our wedding anniversary, Zane and I were sound asleep.
Earlier in the evening we had hail it woke me up and I came downstairs and Zane and I stood in our back doorway and stared out at the patio. We watched the hail come down and beat up my flowers. We talked for a bit and i went back to bed. At around 3 am we heard a loud crash sound, the dogs started to bark and we both woke up. I looked at my phone and got out of bed. I went back in the bedroom and told Zane I was going downstairs. When I came downstairs the front door was wide open and both dogs had ran out the door I was so confused a few seconds later Zane came down and said Ryanne, the TV is gone. That's when it hit me that we were robbed.
I went to the knife block and grabbed the biggest knife we have. And then I called 911.
The rest is a blur I mean its all a blur really.
I felt very violated and very scared. I felt like I was never going to sleep again.
Immediately after my biggest concern was Lily. We called out to her but she wouldn't come back and I worried the robbers would kick her or run her over or something I mean I still didn't fully know what was happening.
At this point we still didn't know if anyone was in the house as we have a basement and a detached garage. The police arrived 14 minutes later and I must say the 911 operator was so helpful.
Anyways the main thing is we are happy and healthy and recovering and that isn't even the worse thing that happened to us this summer! Our poor little Jade got sick in June and it was just awful. I'll write more about that later. That's enough drama for one post!

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!

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.

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!

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.