Thursday, March 23, 2017

On and On

So, this is normally the time would I would write and say that I am feeling all better. However, that is not the case. I am still taking antibiotics and I still have lots of blood in my urine.

I am following the doctors orders but am also trying some home remedies. So far I have tried drinking lots of water, cranberry juice, ginger tea, honey, lemon, cinnamon, garlic and ginger. 

Fun fact when you have urinary tract symptoms and have a bleeding disorder do not take cyclokapron.

Hopefully I will post again soon saying that I am back to normal. 




Saturday, March 11, 2017

The tale of the never ending uti

So, this is my life the last weeks. I started having urinary tract infection symptoms in early February so I went to a walk in clinic and the doctor prescribed me Septra so I took it until it was all done then starting having symptoms again so I went to a walk in clinic. This time my urine was so red the doctor said I should contact my Hemophilia Treatment Centre. So on Saint Valentines Day I went to the clinic and got 4 units of Octaplasma, a urine test and an ultrasound. Everything came back normal so they gave me Cipro. So then after they were all done of course the symptoms came back so I went to my family doctor she prescribed me Macrobid. I was hoping and praying that that was the end of it but nope I started having red pee again so I went to my second family doctor and he gave me Teva Cefelixen so Ive been taking that for the past three days and my symptoms just seem to have gotten worse. My urine is very red, Im uncomfortable and im tired.
Zane took me to a walk in clinic today and the doctor there said he doesn't want to give me any more antibiotics because he is afraid I will build up a tolerance to them. He also said I should see an Infection Disease doctor and a Urologist. 
So now I am thinking about going to emergency or waiting until the clinic opens on Monday.
I don't want to go to emergency because its a long wait and the doctors always lean towards some invasive testing like CT scan, big IV;s and drugs. I know sometimes those things are necessary but I don't want to get any scans if I don't need to.
The problem with waiting until Monday is I am scheduled to work on Monday and I only work part time so calling in sick looks bad on me as an employee and I don't get paid.
I spend so much time thinking I need to put my health first but sometimes you have to put your life first because as I am learning if you always put your health first you end up with not much.

Tuesday, January 17, 2017

Broken Telephone

So, I spoke to my doctor at the clinic today and she said there must of been a communication breakdown somewhere along the way because she was under the impression that I only had red skin and not a huge purple bruise.
Im honestly not sure how that could be because I feel like I communicated clearly but Im not gonna say its impossible I mean people make mistakes all the time.
So, my doctor suggested I go in tomorrow for an Ultrasound and then we can move forward based on those results.
I find the whole situation stressful and I have been eating crackers and granola bars all day. I eat when I am stressed and the lack of control of how I am treated is really bringing up a lot of stress and anxiety for me.
Thank god for the support of Zane and my friends and family.
I hope everyone has a good support system but especially people with a chronic illness.

Monday, January 16, 2017

Clinic Disappointment

So, I woke up Sunday morning with a huge bruise on the left side of my abdomen.
It alarming because I don't remember doing anything to it its big its purple and black and its growing and swollen.
I traced the bruise and today is has grown outside the line and there is a lump.
So ok in my mind Im thinking, its hot its bruised theres a lump inside, this is a classic bleed. So I call my clinic this am and they say don't even bother to come in theres nothing we can do. I have a lot of problems with this. First of all, how can they diagnose something over the phone? Second of all, why is my opinion never factored in? Why don't they think like ok, they personally think its nothing but why would someone whose had this condition for 33 years bother to call us if she wasn't seriously concerned?
If I was a male factor 8 or 9 they would say infuse over the next couple of days and call us with an update.
But because I am rare I am told to just suck it up. Why don't I deserve peace of mind? Why don't I deserve proper care and investigation?
My clinic makes me feel over and over that I don't and that I am an inconvenience because I am a special case.
I am beyond frustrated right now. I went to my family doctor and she has ordered an ultrasound but I can't get in until Friday.
At the moment I am thinking I might just go into emergency tomorrow.
Of all the terrible aspects of Hemophilia I think fighting with your clinic is pretty close to the top.
Im gonna go for a stress nap in the middle of the day but Im hoping when I wake up I feel a bit better about the whole situation because right now I want to scream!


Sunday, November 13, 2016

I have tried in my way to be free

So, when I get stressed out I either blog alot, or not at all. And I haven't been able to bring myself to write for a while now. Ive just had so much on my mind. I worry about my mom, I had an ankle bleed and I had a nose bleed on an off for 7 days. Not much fun at all. But I am getting the house ready for Christmas and Christmas always makes me happy and hopeful.

Monday, August 1, 2016

It's a good life if you don't weaken

So, Zane and I went to see the last hurrah for the Tragically Hip. It was an awesome night, 20,000 people packed into the Saddledome bobbing along as Gord Downie sang his swan song.
I was so happy to be a part of the whole thing as The Tragically Hip seems to have been playing in the background my whole life. I first heard of the hip when I was 9 years old. My older sister and I were visiting my father in Edmonton and had lined up tickets for us to all go to the show. It must of been the long flight from Newfoundland or all the shopping around but I ended up with a bleed and spent the night of the show in the emergency room getting a blood transfusion. My sister Kelli said it was the best show she ever saw and came home with a t shirt. I was jealous of course but I got my chance to see them when I was in Grade 11 when they toured Music @ Work. It was the first rock show I ever really saw and they were one of the few big acts to come to our little tiny part of the world.
My third year university they came to Cape Breton, Nova Scotia and I got to see them again. I've seen them through many different stages of my life and it was so nice to see them again tonight with my husband for our third year wedding anniversary.
Of course, we were shocked and saddened when we heard this would be their last tour and that Gord was sick with cancer.
We were shocked and saddened when Zane's Mom passed away this time last year also of cancer.
 I don't think you could throw a rock without finding someone affected by this terrible disease. I wish there was something we could do.
If only clapping hands and waiving lighters could cure cancer.


Newfoundland Adventures

So, Zane and I just got back from 10 days in Newfoundland. It was quite the world wind tour, we went to a stag and doe, stood in a wedding, visited my mom in the hospital, took her home on a two day pass, visited with family and friends and did a bit of shopping. 
My heart is always broken when I come back from Newfoundland. I cry all the way to Toronto every time and even have a cry or two a few days before we are set to leave.
This trip was especially hard because I am worried about my momma. She just got out of the hospital after spending three months there for a hip replacement. She worked so hard in physio and has been in a lot of pain over the past three months. It was so nice to see her recovering and return to her home. She is so happy being home with all her memories and her family and friends just minutes away. I do worry about her though being home and dealing with Parkinson's. My mom and I have spent our entire lives together worrying about each other. Me with my Hemophilia and now her with her Parkinson's disease. Just like she couldn't stop or control my bleeding I can't control her Parkinson's and its progression.
All I can do is help her when she asks and pray for her health and happiness. 
I do love living in Calgary I love the great health care and our home and dogs and family and friends but I think a little piece of me will always be in Stephenville, Newfoundland.