Friday, December 27, 2013

Christmas time in the city

So, Christmas time is over now our house is full of gifts and wrapping paper and left overs. I wish I could say I had a wonderful Christmas but again Hemophilia has gotten in the way. My nightmare leading up to Christmas really stayed with me even after I got better and I found it hard to just jump into regular every day life.
After spending 9 days in pain I felt isolated, exhausted and worn out in pretty much every way possible. The thing is no one else just went through what you went through so they don't understand how you are feeling. It sounds crazy but after you go through something like that you feel like you should win an award or something but you just have to pick yourself up, smile and move on to the next day. 
Sometimes its harder to pick up and move on than others.
It reminds me of one Christmas when all of my friends seemed to be interested in ice skating. I, of course could not go ice skating its hard on the ankles and I was advised not to skate.
I remember going up to my room and just screaming and crying in frustration. I was only about 7 or 8 at the time and I didn't understand what was going on all I knew was that I wanted to play with my friends and instead I was alone in my room by myself.
I feel like that little girl a lot. Every time there's something I cant do, every time I have to take a step back and deal with my illness instead of everyday life.

Monday, December 23, 2013

Merry Christmas to all!

So, I just wanted to take a minute to say Merry Christmas to all of my wonderful friends, family and readers! I really appreciate all of your help and support while i navigate life with this interesting disease!
I am praying that everyone has a safe, happy and healthy Christmas holiday.
I was going to type that I am so happy to not be in the hospital for Christmas but it is only December 23rd so I won't type that just yet. As you know things can change at any moment.
A really great website to check out and maybe think about giving as a Christmas gift is
I'm off to enjoy Christmas! Good night!

Friday, December 20, 2013

On to the next one!

So, my nightmare is some what over I guess for the moment. I had a sit down meeting with my clinic to discuss this whole placebo foolishness and I think the bottom line is this. They are never going to think I have a bleed unless they see it in diagnostic imaging and I know after 30 years of having this that sometimes its not always clear. So I think we are always going to disagree on that front. Disagreeing is totally fine it happens and theres nothing we can do about it, my only concern is that in this situation I am the only one who suffers. Maybe suffer sounds dramatic but missing work and being in pain and not sleeping for 8 days is suffering. I just feel like it is unfair that someone else gets to decide whether or not they get treated. I feel like at the end of the day, no one knows how I feel better than me. I've been doing this for 30 years I feel like I know when I am bleeding and when I am not.
I find it frustrating to because I don't have a lot of support or resources when it comes to this because the population of factor 5 hemophiliacs is so small. Most Hemophiliacs just infuse whenever they want at home.
So because we are such a small group spread out all across the globe I feel like there isn't a lot of support or understanding even of what we go through.
I think the whole placebo thing really upset too because I have been called a liar so many times when it comes to my Hemophilia. For example I once had a doctor say to me, look we aren't giving you any drugs so you can just stop it. If i was just looking for drugs then making up severe hemophilia and getting more than 2000 blood transfusions must be the most elaborate ruse of all time!
I think a doctor not believing you or thinking that your making something up is one of the worse things that can happen.
I don't know what will come out of all this right now I feel discouraged, tired and a little bit grumpy.
I am praying that my next bleed will be a lot smoother! However, I some how feel like my troubles with hemophilia are far from over!

Tuesday, December 17, 2013

The nightmare before Christmas

So, theres no way to get my point across other than telling you the whole story so forgive me if this blog post seems a big long.

I travelled to Newfoundland about three weeks ago to help my Momma who is recovering from a hip replacement. Everything went well except the fact that she was in a ton of pain and while I was home I became her care giver. I was so happy to help but it took it took a lot out of me and upon arriving back in Calgary i noticed that I was in a lot of pain.

I flew in on Friday and went to my Hemophilia Treatment Centre on Monday morning. They said it was just muscle pain. I went back on Wednesday and asked to be treated with Fresh Frozen Plasma and they said no its just muscle. I called them on Friday because i was still in a lot of pain and they said no we will no infuse you so i went back in on Monday in excruciating pain and pretty much begged them to infuse me.

I am happy to report that I feel a lot better. I am no longer taking pain meds and I slept through the whole night comfortably.

I woke this morning to a call from one of the doctors from my clinic. She asked how I was doing and said that she thinks the plasma has a placebo affect on me.

I am completely hurt and baffled as to why a doctor who has little experience with a sever factor 5 Hemophiliac would make a statement like this?

I know that I should just ignore it and be happy that I am feeling well but these are the people I look to for help when I am sick. Now I find out they think I am making up the pain? it realy doesn't make any sense to me.

In my distress I've contacted every severe factor 5 Hemophiliac I know of which is about 6 different people they have all stated that they experiece almost immediate relief.  They have also stated that sometimes there is no rhyme or reason for their pain.

At the moment I feel helpless, I feel like down the road when I am in pain I will not get the help I need or if they do it will be after days of suffering and begging and pleading.

As for the placebo affect thing I take it very personally. I have a small handful of people that even have this stupid rare disease to talk to about this. Theres no real authority on severe factor 5 hemophilia. I am an authority on my own health and what I need but it turns out that isn't true. If I feel I am having a bleed I have to convince someone else of that and that is not fair.

30 years of living with this disease and I feel like i don't even get a say on how I am treated. Not only that but theres not one thing I can do about it. The only thing we have been discussing is potentially moving to another clinic but I suspect it will just be a different set of problems.

I hate how having Hemophilia always has to be such a fight. I fight with people to not treat me differently because of my disease, I fight with work places to not fire me because of my frequent sick days and now I feel like I have to fight for treatment.

Every time I feel like ive overcome an obstacles with this diesase a new one presents itself. The only thing that makes me feel better is that the next person who is born with severe factor 5 hemophilia will atleast have a very detailed account of what its like to live with this disease!