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!