At the beginning of the year I applied for a Bayer healthcare internship which lasts eight weeks during the summer. In May I was notified that I had been accepted as an intern in the global office at Bayer healthcare facilities.  To start out my trip I left on June 19 and arrived in New Jersey later that day. When I arrived at the airport I was feeling a slight pain in my hip.  I decided to quickly find the spot where I needed to rent my car so I could get to the hotel and infuse myself. As I was driving home I noticed a knot on my hip from were the seat belt was lying on it. By the time I got to the hotel it was hurting pretty bad so I checked into my room and examined the swollen area.  It was just a little knot so I did not think that it would get any worse. After I infused I laid in the hotel room with ice on the knot.  That evening I took a shower and realized that it had spread.  I was getting a little worried about it so I called the HTC in New Jersey. They told me just to factor, ice it, and prop it up.  I took pictures so if I had to go to the doctor I could show him what it looked like before I treated it.  I then decided to e-mail it to my mom, to let her know what was going on.  The next day it really didn't get any better so I decided to go to the ER to make sure that it was not deep in the muscle because it is in an area that could affect several things.  After about seven hours in the ER I finally got what I needed.  I got a CAT scan to determine if it was deep in the muscle or not.  The CAT scan was read and it was determined that it was not deep in the muscle and it was just soft tissue.  So that was to start of my internship, very eventful already.  At least I now know where the ER in the HTC is. The only problem I had in the ER was that the doctor seemed like he knew more about my body then I did. This made me upset because he kept saying, "Your fine, don't worry about it."  I never go to the ER for bleeds unless it's severe. If I felt I needed to be seen then I needed to be seen, end of story! I am the patient. 

 

There’re so many times that I think that doctors need to just step back and listen to their patients.  No two hemophiliacs are the same.  We all bleed differently and we all respond to treatment differently.  Often times it seems that doctors go by the book definition of hemophilia.  Some doctors seem to believe if the book definition of hemophilia is one thing, then they cannot stray from that definition.  Take my cousin and I for example, we both have severe hemophilia A, but we bleed differently.  We also respond to treatment differently.  Just because we are in the same family, and just because we both have severe hemophilia A, does not mean that hemophilia treats us the same.  We know our bodies better than anyone else.  We all know the signs of a bleed, we all know when to infuse for bleed, and we know when we don't infuse that there will be consequences for not infusing.

So next time you’re at the doctor and it seems to you that your doctor is not listening to you, stand up for yourself!  You are your own self you are your own definition of hemophilia and you are the one in charge.

 Don't let hemophilia stand in your way.  If you want something go for it.  I was afraid that this bleed was going to get out of control and I was not going to be able to finish my internship.  I set my mind towards one goal…getting better.