Saturday, February 18, 2012

Hemophilia is a pain in the butt...literally!

So, I spent Friday in the hospital I went to the Hemophilia Clinic in lots of pain, my right leg felt sore from my gluteal muscles to my knee I think it was from overuse when I went to Montreal but either way I ended up in the hospital. After two tried for an IV I received 50 mg of Benedryl, two units of frozen plasma, percocet, more benedryl and then two more units of frozen plasma. The whole process took about 8 hours, its very tiring but my Dad came up with so that was really nice and made it a lot easier. 
My plans for the rest of the weekend is to rest and ice my leg. Luckily (unluckily) Zane has a bad knee as well so both resting up together. 
Anyways, this bleed has got me thinking about what people think about Hemophilia. In my opinion people are very ignorant about my Hemophilia and people with disabilities from the kids who use to make fun of me as a kid because my lip was always bleeding to the adults who think I'm faking it. The thing about me is that I can be having a bleed and still look perfectly normal. I can put make-up on and do my hair and look just like I do any other day except inside I am actually in a lot of pain. In fact living with Hemophilia I am often in a lot of pain on the inside but I've learned to deal with some of it and hide some of it. 


  1. I really appreciate this post -- love the title and I have gotten that, "but you look so healthy"line so much in my life. I suppose that is better than, "wow, do you look bad," but I just want someone to understand what is going on inside of me.

  2. So glad you liked it! thank you so much for reading and for taking the time to write!its a constant battle hey!?

  3. You described everything I've been through and continue to go through to a T. Over the years I've come to call it the "mask", what everyone sees on the outside while the constant pain stays inside. When you find someone who really does understand what you go through, you treasure that rapport you have with them.

    Thank you for putting down what I've been trying to say for years.

  4. Jonathan the mask, that's a great way to put it. Thank you so much for your kind words and encouragement. Thank you for reading and writing.