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!



  1. I understand your frustration completely. It isn't a placebo effect and it is very offensive that she would tell you that and call you to treat you like a psycho. While she may be the doctor, you know more about your body and what it needs. Bleeds aren't always easy to see and just because they don't see it, doesn't mean it isn't there.

  2. Thank you so much for taking the time to write I really appreciate it!

  3. It was a really stressful
    Situation and I just hope it doesn't happen again to me or anyone else

  4. Oh hon! That's horrible! I have similar things happen, just in a type 1 VWD kinda at - bruising without the visible signs. A sensitive spot, sore to touch, taking he usual long time to heal, just no purple splodging only skin. I've only once had it become a problem in the ER, thankfully, your bleeds sound just horrible. I hope you can work out a better treatment plan with your hospital and work out how to get around the well intentioned but sometimes clueless ER and ward staff.