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!


  1. how rare is the hemophillia factor 5? I have factor 9 deficiency...

  2. There are only 150 cases reported world wide

  3. Hi Ryanne, so sorry to hear about this, it is terrible when you are in pain and can’t get the help you need. Having grown up in a time before factor or plasma was available to treat my bleeds gave me many opportunities to hear the doctor say, “Here’s some ice, now go home you’ll be better in a few days.”
    I don’t know much about Factor 5 but doctors should not dismiss a person just because they don’t know what to do. You need to do some research on your own and find a doctor that is willing to help you. That doctor is out there, all you need to do is find him/her.
    It took me 2 years and visiting 6 doctors before I found the one that was willing to take on my broken leg. Don’t give up!!
    Ray Perreault

  4. I have to agree-- I absolutely hate feeling like my doctors are implying that I'm not telling the truth. All I can chalk it up to is that I'm not the cookie cutter case. No, I don't get anemic but that doesn't discount the fact that I'm practically hemorrhaging. It's horrible to be second guesses by someone who is such a big piece in the puzzle that is our bleeding disorders. Thanks for sharing! It's good to know I'm not the only one who has experienced this.