Sunday, May 17, 2020

Je T'aime Papa

So, when I was in Kindergarten our project for Fathers Day was to make a T Shirt for our Dads. I drew a picture of my Dad and our teacher put it on a white T shirt to bring home. I don't completely remember making the shirt because I was so young but it meant a lot to my Dad.
Years later when I was in the Childrens Hospital my Dad flew down from Alberta to see me. When he walked through my room door he had on his Je T'aime Papa T Shirt on and we all laughed. It was so nice to have him around during such a difficult time and the fact that he hung on to that T Shirt for all those years was so touching.
My Dad passed away suddenly and unexpectedly on March 27th, 2020.
I now have the t shirt in my house and I will always cherish it. It reminds be of my father and his amazing sense of humor.


Tuesday, March 24, 2020

Love in the time of Covid-19

So, We are in the middle of a global pandemic. There are no way to fully comprehend the amount of pain and grief the world is experiencing right now.
In Canada, we are lucky to have free health care most people are social distancing and settling into a new normal.
In my own home I have been laid off work and Zane is blessed to be able to work from home.
From a chronic illness standpoint I am concerned that if i get a bleed, I will put more stress on an already maxed out health care system. I am also worried about having to go to the hospital in general and being exposed to potential illness there. I am also concerned because my Hemophilia Clinic is currently closed so I am unable to get in contact with anyone there. At the moment I am happy and healthy so I am praying it'll stay that way until this virus passes.
I will say when it comes to a epidemic, people with chronic illness might be the best equipped. For example, dealing with the loss of a job, over the years due to my illness I have been laid off, fired and made to feel so uncomfortable that I just quit. This is not something that is necessarily new for me. I have been where you are, wondering what my next move will be and thankfully have always found something even if it involved mixing paint or having  funeral for a rabbit (long story).
I've also spent a lot of time worrying about my health so if you are in that boat I am right there with you! There have been times in my life where I was sick, where I was near death and times where I thought maybe I just won't make it this time. Worrying is not helpful and it doesn't get you anywhere but sometimes its just impossible not to.
My only recommendation is to grin and bear it. I hate that advice but sometimes we just have to try and be positive until our situation changes.
In the meantime occupy your time with things you enjoy if you can like reading, watching a movie or cooking.
Since this whole thing has started most people have been scared but also so caring and kind. You will notice in the dark times there are always people reaching out asking if you need help or need to talk.
Lean on the people in your life and don't be afraid to ask for help. I learned a long time ago that it takes great strength to ask for help and most people are happy to do it.
In the meantime, if you need me I will be in my kitchen peeling, chopping and freezing bananas as I accidentally ordered 7 bunches of Bananas instead of just 7.
Take care of yourself, your loved ones and hang in there!

Tuesday, February 11, 2020

Nanny

I breaks my heart to say but my precious Nanny Priddle passed away yesterday. She was 91 and she passed away peacefully in her sleep with her family by her side.
When I first heard that Nanny was sick it broke my heart. I was scared and worried about her and I was worried about how the world would look for all of her family if she died.
However, when I got the call yesterday to say that she has passed I couldn't help but feel blessed and happy and at peace with everything.
You can't help but feel that was when you look back at how many people loved her and how she got to watch her little family grow and grow over the years.
Nanny was about 55 years old by the time I came around. I was a fat, little demanding baby and from the time I was born Nanny was a huge part of my life.
You see when you have a child with a chronic illness it takes a lot of people around to make it work.
Nanny treated me like any other of her grandkids, she didn't act fearful when she babysat me and she never seemed alarmed when she would come and visit me in the hospital. Even when there was probably great cause to be alarmed.
Nanny took me under he wing and seemed to know how to care for me even though my illness was new to the family and rare and severe.
When I would have a bleed she would wrap my ankles up in hot towels to ease my pain. When I couldn't sleep she would sing to me, these old lullabys that I had never heard of but they were so soothing.
We were blessed to all live in the same town and every Christmas, new years, Easter, thanksgiving and milestone birthdays we would all gather at nans house. Everyone was welcome and her and Poppy would cook these large meals. She loved hosting everyone and didn't mind if you brought a friend or neighbor.
The last time I saw Nanny was when we were all home for her 90th birthday. I thought she would live to be 100.
Nanny had a seemingly endless supply of love and care for people. She has 13 grandchildren and Im sure if you asked each one of them they would say they were her favorite! She had a way of making us all feel special just the way were are!
I am sad that I can't see her anymore and I am sad for all of my family as we all loved her so dearly but ultimately I am thankful that we got to have this fantastic woman in our lives for as long as we did.
As most of my family and friends know, Zane and I are in the process of adopting a child. It is a long drawn out, terrible process but thinking of my Nanny gives me strength to carry on and the confidence to know that even if I am 10% of the wife and mother and grandmother she was I'll be doing alright.



Thursday, November 28, 2019

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!






Wednesday, November 13, 2019

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.



Monday, November 11, 2019

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!


Sunday, November 10, 2019

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!