So, ever since I got back from Newfoundland my nose has been bleeding on and off. Nothing serious, just a little trickle here and there. However, last night I had a full on nose bleed it woke me up out of bed and I had tissues to my nose for about an hour. I haven't really had a bad nose bleed since I was about 10 years old. Ahh nothing like the taste of blood in the back of your throat to bring back childhood memories. Anyways, Transexamic Acid or Cyclokapron is a wonderful drug, you take three pills, three times daily and it helps to stop the bleeding. (it doesn't actually stop bleeding it helps to stabilize a clot once it is formed.)
This drug works great for me it sometimes gives me a stomach ache so I sometimes cut down the dose especially if the bleeding isn't heavy.
It is a wonderful drug but very expensive almost 1.50 per pill and when you are taking 9 pills a day for one or two weeks it can be very pricey. I am very blessed and I have a health care plan so I don't have to pay anything but there are thousands of Hemophiliacs who can't afford this potentially life saving drug. That's why every Christmas I urge everyone to donate to SAVE ONE LIFE. This organization helps Hemophiliacs who can't afford factor or blood transfusions. Hemophiliacs who do not receive adequate treatment can have life long problems or even bleed to death so please consider sponsoring a child or donating at http://saveonelife.net/.
On another note, if I have to be bleeding from somewhere I would definitely choose a nosebleed because you can easily see how much blood you are loosing and they aren't painful.
So I really can't complain. I'm gonna watch a Christmas movie and wash my Cyclokapron down with some cranberry cider!
So, today is Thanksgiving here in Canada and I have to say there are many many things I am thankful for.
First of all I am so thankful to god that I am healthy this weekend. I am also thankful for my darling husband Zane. He is so helpful and supportive I don't know what I would do without him. Last but not least I am thankful for our awesome friends and family. We spent the weekend with are friends and had a great time visiting with them. We also have an amazing family that we love very much.
Sometimes when I am sick it doesn't feel like it but I know we are very blessed.
I hope everyone is having a great long weekend and that they are happy and healthy.
I've attached a picture of Zane and I and our two dogs Lily and Jade. Hopefully next year we will add to our family but that's a post for another time!
So, I've had a lot of healthy concerns over the summer including, mysteriously dropping hemoglobin, a wrist bleed ad pneumonia twice! Now that the fall is here I am catching up on a lot of appointments.
Last week I went to visit my dentist and my wisdom teeth are of course a concerns but my dentist seems to think that as long as I keep my teeth really clean and healthy the wisdom teeth will eventually grow in and now cause too much trouble. I am very happy to hear this because dental surgery sounds like a nightmare to me. I also had the joy of going for a pap test. It's a test that I really really hate but it is so important to have done yearly. While I was at this clinic my doctor recommended I get the HPV vaccine, Gardasil I always thought this vaccine was only for those under the age of 26 but it has been approved for women up to 45 years of age.
This vaccine helps prevent against almost all HPV virus, which can lead to cancer.
I am not an expert in this my any means but I've decided to go ahead and get the vaccine. It comes in three doses similar to the twinrix vaccine.
Its definitely something worth talking to your doctors about.
So, since the last time I wrote I had an arm bleed and a leg bleed. They were very painful but easy to deal with and only required 4 units of octaplasma and one day in the hospital so I can't complain.
Zane also injured his knee so he has been on crutches for the past three weeks. Needless to say, it hasn't been our best summer yet but we are making it work.
I haven't blogged in a while because honestly I need a break from thinking about my illness. This summer it really started to consume me and I am praying that I will now have a few hospital less months. I have been in the hospital every month since April which has been my longest stretch of separate bleeds to date.
Anyway, switching gears to something positive I have become an Independent Epicure Consultant, which simply means I am selling Epicure. Epicure is fast and delish spices, dips and meal kits. So far I am really enjoying it. For a long time I have been looking for something that will allow me to work and my own pace and on a schedule that works for me.
I will let you know how my progress goes!
So, I thought I would take a minute to write about my illnesses that have been going on for the past two months.
It all started with me feeling tired, I thought maybe I was depressed or something but I just felt tired all the time and then eventually it go so bad that I couldn't walk to the top of the stair es without being completely out of breath.
I went to my family doctor, I went to my hemophilia clinic, I went to emergency, I couldn't get anyone to do anything about my illness until eventually my father came to get me and took me to emergency.
My hemoglobin was 55, I had pneumonia, I had swollen lymph nodes in my chest and I was bleeding internally so needless to say I was in rough shape.
I was treated with about 6 unit of red blood cells and 10 units of Octaplasma.
My doctors think that I had a bleed that caused my levels to drop and then when we treated it it disappeared.
Just to be sure they did every test I've ever heard of a endoscopy, bronoscopy, colonoscopy, EKG, Chest X ray, ultrasound and two CT scans.
Everything came back normal except the CT Scan, they think I have a lung disease called sarcoidosis which I will explain if I actually get officially diagnosed with it.
I see a lung specialist in May to find.
Anyways, I really wanted to blog about this because in 32 years I've never had a bleed without pain so I'm still confused about how I had such a huge bleed (enough to drop my hemoglobin 5 points a day) without noticing blood anywhere and no pain.
I find this very scary to think you could be bleeding and not even know it?
The other scary part was the biopsy. I could tell by my doctors face after my CT scan that things weren't right and thats when they said they wanted to do a biopsy because my symptoms were consistent with lymphoma.
So overall it was a hellish week, not to mention the terrible reaction I had to propophol, the nausea from the morphine and the joy of drinking more than 8 litres of contrast dye.
The worst part of the week was the fact that it kept me away from seeing Della but I know she understood. She was always so understanding and respectful of my illness. She never wanted me to push myself or stress about anything especially her, she wanted me to be happy and healthy.
On Monday morning I got the call I have been dreading for a year. My husband called to tell me that my darling mother in law Della passed away. I would say, she lost her battle with cancer but I don't think she lost. She fought cancer three times in her life and I think in the end she agreed to go.
I don't want to write about it but I feel like maybe if I get out how terrible I feel maybe I will feel better but, I suspect I could write a thousand pages and still feel sad about Della.
I met her 10 years ago when Zane and I started dating and for some reason right from day 1 she treated me like I was so special and such a blessing to have around. I loved the way I felt around her because she made me feel like I could do no wrong and that I was important.
When I think about her I picture her at our wedding. She wore this beautiful white dress and she honestly looked like a little angel. She seemed so happy that day and helped us with so much even though she had major surgery just 4 months earlier. I can't imagine the strength and courage it took suffer like she did and she did it with grace and dignity and a smile on her face.
The last time we talked she called me while I was in the hospital and asked me if I need anything! If I needed anything? She was in the hospice fighting for her life and she wanted to know if I need anything? And she asked if Zane knew, cause sometimes her and I would have small secrets from Zane just so we wouldn't worry him.
I can't believe the only person in the world who loved Zane as much as me is gone.
I could never thank her enough for raising such a wonderful man.
I will say I am not sitting here wondering if Della knew how much I loved her and I am not wondering how much she loved me. Della loved with her whole heart and I know she knew that I thought the world of her.
So, Secrets and Lies is a TV show on ABC. It is the most perfectly named TV show since a recent episode has a character describe Hemophilia as "A nasty bi product of incest."
That is a complete lie.
When I first heard about this I was a little mad, I thought this isn't true, why would they say that and is hurting an entire community of people really crucial to the plot development of this show?
Anyways, after a few days I tried to forget about it because as I've mentioned before I have low iron at the moment and I am feeling completely exhausted.
But this whole thing brings up some very painful memories for me.
When I was a kid I was watching Degrassi Junior High with my older sister. I was maybe 8 years old and one of the characters was told he could possibly have AIDS. He said something along the lines of "I can't have AIDS only gay people and Hemophiliacs have that." Now looking back that was the first time I have ever heard the word Hemophilia on TV and it was mostly likely the first time I heard of AIDS and even though I didn't know what it was I knew it was bad by the way he was acting.
Isn't that a terrible thing for a child to see on TV? Isn't that a terrible thing for other people to see and maybe assume that about somebody?
That's the problem I have about this comment on Secrets and Lies, I don't need an apology from ABC I am old enough now and I have been to many conferences and I know how Hemophilia is passed down genetically.
But what I do need is for any young adults out there who have seen this show or heard of this to know that just because a person has Hemophilia doesn't mean their parents were brother and sister as it states on the show. That is just rude, uneducated and not true.
March is Hemophilia awareness month and this is a terrible reminder that we obviously as a community still have a lot of educating to do!
So, I am currently wearing a 24 hour blood pressure monitor and it is absolutely terrible. That sounds dramatic but the darn thing goes off every 3o minutes and its noisy and it hurts and my arm is covered in little red dots (petechiae).
Here is a fun fact for you, an older hemotologist once told me that back in the day they would diagnose the severity of Hemophilia they would measure the amount of petechiae or little red dots left on their arm after a blood pressure reading. If the amount was bigger than a quarter then the person was considered severe. How's that for old school?
Anyways, I'm trying my best with this monitor but I can guarantee if it wakes me up in the night I will be be taking it off.
I wish there was a gentler way to diagnose things. I'm at the point now where even blood work leaves bruises and veins are hard to find and its just annoying. I am praying for a factor 5 concentrate and an easier way to diagnose things.
What is your most hated diagnostic test. Mine is anything involving barium and needles.
Wow! I am 32! I am not sure how that happened but here I am. I don't always love getting older sometimes I'd rather say I'm 28 than 32 but at the end of the day growing older is a blessing and even though I've had a lot of bumps along the way who am I am to complain?
Well I gotta complain a little bit otherwise I wouldn't really have a blog! I am still feeling a bit stomach sick and tired but overall I feel great. I feel so blessed today to have so many birthday wishes, presents and cakes!
There was a time when I was very very sick and in the Janeway Children's Hospital for my 13th birthday.
I've attached a picture of all the cute cards and gifts while I was there. I actually still have all the cards and letters from that time.
Anyways, Speaking of growing older tomorrow I am going to get hooked up to a 24 hour blood pressure monitor so we shall see how that goes!
Thank you for all the birthday love! I really appreciate it.
So, Friday I spent the day in the hospital. I went in because I was having chest pain and my blood pressure was very high.
After an EKG, Blood work and Chest X ray the doctors discovered that I simply have a really bad flu.
I am finding that having a chronic illness is honestly a full time job. This month alone I have 9 separate appointments at different offices, different times all across the city.
For example Thursday I am going in to get a 24 hour blood pressure monitor put on. My family doctor ordered this so that we can see whats going on with my blood pressure because in the last few days its been 150/80, 120/80, 160/92. Just all over the place.
I am not surprised that I've been having a few medical troubles. This past year has been has been extremely difficult to say the least. We've had a family member diagnosed with terminal cancer and another family member diagnosed with a chronic illness.
I wouldn't wish this on anyone. Illness in any capacity is exhausting and heartbreaking.
Since this all started last April Ive had, stress induced hives, bleeds and many days where I just want to hide under the covers.
I think that's why its taken so long for me to blog. Its hard to write or think about anything but illness.
Here is a picture of me in a beautiful blue gown in preparation for my chest x ray and EKG, the next picture is my IV which took three tries to get in, the next is my red hand from cutting up beets as they help settle the gallbladder and the last picture is some condensed beetroot juice that tastes absolutely disgusting.
So, my gallbladder has been bothering me a lot lately. Not a full on Gallstone attack because those are brutal but Ive been uncomfortable and queasy.
Today I threw up outside of the bank and at the grocery store so that was interesting but that's what happens when you have gallstones. Now as for how to solve this here are my options:
I can keep the damn thing and just live with the attacks. The problem with that is its safe to say the attacks will eventually get worse and more frequent and its possible that a stone could get lodged in one of the ducts and that could cause infection and all kinds of problems.
The other option is I can get the gallbladder removed. The problem with that is of course surgery for anyone is risky but especially for me, I am a bleeder and I have no concentrate factor. The other problem with that in my mind is that I've never had surgery before and I've always been told I can't have surgery. Never tell a child they can't do something because here's the thing, they will believe you! So many things I do or don't do in my life are based on things that people told me when I was a child that are really not even true but they are so ingrained in my mind.
The other option is taking the medicine that will dissolve the stones. The problem with that is I'm not crazy about all of the side effects of the drug and once you stop taking the drug the stones will just come back. So at the moment I am not sure what to do.
My plan of action is to consult with the surgeon in April, consult with my Hemophilia clinic in March and consult with the GI specialist in May. Normally I always side with whatever my Hemophilia clinic says I feel like they know me the best and have the most experience with my particular situation. Of course I'll be praying and consulting with the man upstairs too!
I'm curious has anyone in the bleeding disorder community had this problem?
So, I've been complaining lately that I haven't been able to blog in a while so today my body hast decided to act up on me. Sunday, I started having stomach pain and by today it was so bad I had to go to the doctor. He said that its a gallstone attack so I am off to the doctor tomorrow to get an ultrasound.
I've had gallstones since I was 12 years old and I am so lucky that I've only had about half a dozen attacks in my life. The thing is my hematologists don't want to remove my gallbladder unless its absolutely necessary. So as long as I'm only having a few minor attacks here and there I think I will hang on to them. In the meantime I am very uncomfortable and I'm really looking forward to getting this ultrasound so we can see if the stones are blocking something and then we can decide what to do from there. Last time I was given a blood transfusion and antibiotics so in the grand scheme of things not the end of the world.