Tuesday, September 18, 2012
So, lately I've been having a few aches and pains. It finally came to ahead Sunday night when I woke up at 3 in the morning in unbearable pain. A hot bath and a few percocets later Zane dragged me into the Clinic. An Ultrasound revealed I have an ovarian cyst. The problem with this is that it will either grow and rupture which means a few transfusions, a hospital stay and lots of pain, or, it could shrink and I'll never have to deal with it again.
The tricky part is I am suppose to be leaving for Newfoundland on October 1st. The action plan is I will getting an ultrasound on September 27th so by then if the cyst has grown I will be advised to cancel my trip and if it shrinks I will be on my marry way.
Either way it is very frustrating! I've been looking forward to this trip ever since I left Newfoundland back in July. I'm also upset because I feel like a ticking time bomb. When this cyst does rupture I know I am in for a lot of pain. The last time it happened it took 16 units of blood and lots of morphine before I felt better and I just don't feel like going through that again.
In the meantime I've been googling a few things I can do to get rid of cysts naturally. These things include, no caffeine, no sugar and no carbohydrates some of my favorite things.
At the end of the day Zane and I are happy and mostly healthy so that's blessing enough!
Tuesday, September 11, 2012
So, I spent the weekend in Toronto for the Canadian Hemophilia Society National Youth Committee retreat.
The weekend was all about advocacy. We had 25 participants and everyone was friendly, kind and seemed very interested in getting involved.
One of the first presenters was David Page, the fearless leader of the CHS. He told us about WHY we are involved, WHY are we doing this. His presentation was great, perhaps my favorite of the weekend. What I took away from it is that we need to stay involved to ensure we have a safe blood supply, access to said blood supply and that our clinics are running as they should be.
A huge part of these conferences are what happens after the presentations. Eating supper together and hanging out gives us a chance to talk about our own experiences.
I love spending time with the Youth Committee its the only place where you can discuss which pain killers you like best, talk about all the different hematologists and argue about who has the biggest chart. It's so different being around people who are just like me. Well almost just like me, the boys gave me a demonstration of how they infuse their product. I was so impressed and so jealous. It took them about 5 minutes to give themselves an IV an infuse. The product they use is recombinant so it contains so human blood product and it is a concentrate so its a small little vile. Within minutes they bring their levels up to normal and are on their way again. I asked them how it felt and they said they felt no different.
I am so jealous because for me to do that takes a trip to the HTC, an exam from a Hematologist, often times diagnostic imaging, starting an IV, Benedryl, and 4 units of Fresh Frozen Plasma which takes at least 4 hours at the best of times.
I feel like my life would be completely different if I had a product.
At these conferences we also talk a lot about research and advancements in the treatment of Hemophilia and this is another area that makes me jealous because while other factor treatments are moving forward there hasn't been any progress with the treatment of Factor Five since it was first diagnosed in 1944!
Octaplas or Octaplasma is a new treatment I am hoping will be effective for me but it is still old fashioned compared to the some of the other treatments.
Overall, I had a wonderful weekend, I laughed and enjoyed every minute of it! The goal of the Hemophilia society is to ease the pain and suffering of those living with bleeding disorders and this weekend certainly made me forget about Hemophilia.
Sunday, June 24, 2012
So, this morning I got some terrible news. My grandfather, John Edward Clarence Priddle passed away this morning at 89 years old. In the past two years death has been more of a part of my life than ever before and some I'm noticing some patterns. First of all when someone dies people often ask how old they were and don't get me wrong, I don't mind at all but it almost feels like because they are old, it's not as bad or something like that. But, as I've mentioned before, when you love someone, no matter how old they get, you never want to let them go.
My Poppy was born in a small community called Pushthrough and the more I think about it the more I realize that that word is very fitting for the way my poppy lived his life. He pushed through all the hard times and didn't really let it bother him. Years ago he had a triple by pass and then about 17 years ago I guess now he was diagnosed with Parkinson's disease. I was in high school when it happened and I remember googling it and having people say that he would die of old age before he would die of Parkinson's disease. Once I moved away from my home town I only got to see Poppy once a year. Each year I would notice his hands shank more and more and it would concern me, but it never seemed to concern pop. He continued to paint and cook and live life like he always did. Perhaps that's where I got some of my strength to live with my Hemophilia.
When I was about 6 years old my parents got divorced and so me my mom and my sister sought refuge at Nan and Pops house, while living with poppy he turned into my second Dad, he taught me how to cook and bake and even left me loose in his art room where together we painted my favorite picture of all time, a vase with flowers.
One of my fondest memories with poppy is when I was about 8 or 9 years old and I was hospitalized for a few days for a bleed somewhere. Nanny and Poppy came to visit me and I cried because I missed seeing their dog Puppy. Seeing me in pain my poppy drove the dog up to the hospital and lifted the dog up to the window of my hospital room so I could reach out and pet the puppy. I still remember my hospital coat blowing in the wind and poppy with a big smile on his face holding the dog up over his head.
I could go on and on all day about all the wonderful things my poppy did for me, all the delicious cakes he baked me all the things he showed me about art and photography and his overall kindness and love for his family and friends. To think that it all ended today kills me. It makes me sick to think about. But I know it is not over, I know that poppy lives on in all 5 of his wonderful children his 13 grandchildren and 6 great grandchildren. I know that every time I cook something or look at a beautiful piece of art I will think of the kind and gentle person my poppy was and how blessed I was to have him in my life for 29 years.
He was also born on March 3 one day and 60 years before me. Because of this I always remembered his birthday and we always had a special connection, we actually spent several birthdays together. He would make me birthday cakes when I was younger and as he got older I would make him birthday cakes.
I am heading home to Newfoundland on Tuesday to pay my respects to this wonderful man. It won't be easy but I like to picture him up in heaven having a chat with my grandad and Charlie.
Monday, May 28, 2012
So, I am currently watching a movie called And The Band Played On. It is a movie about the AIDS epidemic. I hate watching or reading things about this time in history nothing hurts me and disturbs me more. I subject myself to this because I feel it is important for me to learn about this time in history. I feel that everyone needs to be aware of what some people had to Go through to ensure we have a safe blood supply system. The movie has a famous line, "how many dead Hemophiliacs do yiu want," this refers to the fact that when it was first discovered that the AIDS virus was be transmitted through the blood supply people fought the idea of pulling the contaminated blood because of the cost. Greed, Ego and Ignorance lead to the spread of AIDS as far as I can tell. How something like that can happen is beyond me but I think it's important that we remember those who suffered and remember that we need to Keep blood system safe for everyone not just Hemophiliacs but anyone who may require a blood transfusion. The key to this is to never let money come before health.
Wednesday, April 18, 2012
So, this morning I got the terrible news that my grandad father Radford passed away in his sleep At the age of 92. I had the good fortune in Life to grow up around both sets of grandparents and over the years they have become as close to me as parents. When you are a child your grandparents are old, they just always seemed old and you knew that about them right off the batt and that's how it was. I never imagined that they would someday grow even older and pass away. I know at 92 death is somewhat close but as a family member it's still hard to accept when you love someone they could grow to be 212 and you still would be sad to see them Go. Today is also World Hemiphilia Day. I didn't really feel Up to celebrating this year but I was thinking of all of my Hemophiliac friends today. I was also thinking about how Hemophilia affected my relationship with my Grandparents. You see my sister is 8 years older than me and she spent every weekend visiting my grandparents. When I was born I had A LOT of complications and I was in and out of the hospital all the time. My grandparents on my fathers side were nervous to have me over and weren't 100% sure how to care for me. I know they loved me a lot but they just didn't have enough Information so I misses out on sleepovers and getting to spend as much time with them as my sister did. Now that my grandfather has passed away Hemophilia is getting in the way again. The funeral is on Saturday and at the moment I am suffering from a kidney infection. Ive had blood work and an ultrasound and everything comes back Normal except this infection that I've had for more than two weeks now. I'm nervous to travel when I am Not feeling 100% but I also want to be with my family during this difficult time. Whichever way I look at it, it's difficult but I hate how Hemophilia is dictating my life. But this is not about me it's about my Grandad he was a wonderful man who made me laugh and he lived a long happy life and had lots of family and friends who Loved him!
Saturday, February 18, 2012
So, I spent Friday in the hospital I went to the Hemophilia Clinic in lots of pain, my right leg felt sore from my gluteal muscles to my knee I think it was from overuse when I went to Montreal but either way I ended up in the hospital. After two tried for an IV I received 50 mg of Benedryl, two units of frozen plasma, percocet, more benedryl and then two more units of frozen plasma. The whole process took about 8 hours, its very tiring but my Dad came up with so that was really nice and made it a lot easier.
My plans for the rest of the weekend is to rest and ice my leg. Luckily (unluckily) Zane has a bad knee as well so both resting up together.
Anyways, this bleed has got me thinking about what people think about Hemophilia. In my opinion people are very ignorant about my Hemophilia and people with disabilities from the kids who use to make fun of me as a kid because my lip was always bleeding to the adults who think I'm faking it. The thing about me is that I can be having a bleed and still look perfectly normal. I can put make-up on and do my hair and look just like I do any other day except inside I am actually in a lot of pain. In fact living with Hemophilia I am often in a lot of pain on the inside but I've learned to deal with some of it and hide some of it.
Wednesday, February 15, 2012
So, I would like to tell you about this beautiful necklace we are selling tickets on.
The pendant and necklace was donated by Alberta Diamond Exchange a beautiful jewelry store located in Aspen Landing, Calgary, specializing in custom made jewelry for more information check them out at www.abdiamond.ca.
The pendant is 14kt white gold and set with 44 round brilliant cut diamonds and one pear shaped genuine Mozambique garnet.
This piece was custom made specifically for the Southern Alberta Region of the Canadian Hemophilia Society. Tickets are 5$ each with 100% of the proceeds going to the Canadian Hemophilia Society. The winner will be picked on March 9th, 2012 at the 3rd annual Volunteer Appreciation Event.
If you are interested in purchasing a ticket please let me know.
Thank you to Alberta Diamond for their extremely generous donation.
So, I think my news years resolution should of been to blog more because I haven't written in a long time.
Tonight I am writing about a sore leg. But of course, as a Hemophiliac a sore leg is never just a sore leg. It started to get sore around Sunday and its still really sore today so I went in to get it checked out at the clinic. They said they think it's just a muscle strain so I'm going to rest it for a few days and see how it goes. I'm praying it will get better on it's own and that I don't need a transfusion. Anyways this whole ordeal brings me to my point, you have to be so careful with prescription medication. Because of the pain I took a pain killer but I only took the prescribed amount and no matter how bad the pain gets you can't mix medications or drink alcohol with prescription medication.
I know what it is like to be in extreme pain I really do I've bled into almost every joint and I think I have a high tolerance for pain. Proof of my pain tolerance is the fact that I was having a gallstone attack and I worked my entire shift at work and then went into the hospital.
But if you are in that much pain you need to go into the hospital where they can give you the most pain medication possible and keep an eye on you so you don't harm yourself.
Honestly, I find most pain medication doesn't help the pain a whole lot, it takes the edge off but that's about it. If you are in enough pain that you feel like taking prescription drugs go to the hospital and ask for help to get to the source of the pain that is your best bet. Taking excessive amounts of prescription drugs can only lead to stomach problems, addiction and even death.
Tuesday, January 10, 2012
So, recently I was having back pain I thought it was from the gym but a visit to the Hemophilia Clinic revealed I have both a kidney infection and perhaps a knee bleed. I'm on antibiotics and received 4 units of Fresh Frozen Plasma. Blood work showed that all of my levels are good and I had an ultrasound showed everything is normal. I had an allergic reaction to the plasma and had to have benedryl which is never fun because the hives are so itchy and the benedryl really knocks me out. Anyways, the good part of the day was that my Dad came up to visit me. I was transferred over to the ward and Dad and looked at pictures on his laptop. Looking at the pictures made me feel like a person, like someone who travelled, who had good times and has people who love them and reminded me that I have a wonderful full life and I am not just some diseased thing sitting in a bed with cords and drugs being pumped into me.
While I was in the hospital I spent an hour with two other roomates one older man with cancer and another older lady also with cancer.
It reminded me of the last time I was in the hospital in August, in the exact same room in the exact same bed unfortunately my roomate at that time has since passed away. She was a wonderful roomate, so warm and friendly.
It brings me back to my notion that I am very lucky to be here, we are all very lucky to be alive and while I am here I want to do the best I can with the short time we have! I don't know what that is yet but I'm working on it!
Sunday, January 1, 2012
So, last night we rang in the new year with good food and good friends! Since it's the new year I thought it would be a good idea to take a moment and look back at the year we've had. First of all we celebrated New Years 2011 in Newfoundland which in my opinion you can't ask for any better than that! February was a bad month in that I ended up in the hospital for a few nights with a leg bleed, then in March Zane tore his calf muscle and was off work for three months. I started working full time in March so that was good Zane also became a Journeyman Electrician in 2011. In August I had a ruptured ovarian cyst and ended up in the hospital for a few days and in November I had one of the hardest things I ever had to deal with my in my life. I missed my darling sisters wedding because of my health. I was never so disappointed and hurt in all of my life. December was also a very hard month in that I had to work 12 days straight leading up to Christmas and I found it very stressful However, after work finished up for the year things got a lot better we have a beautiful Christmas with our families and rang in the new year in good health so although we have had lots of ups and downs I have hope that 2012 will be a great year. I'm looking forward to good health, to going to Paris in July and to going to Newfoundland for my wonderful friend Stephanie's wedding! I am also praying that all my friends and family have a healthy year!