Difficult Times…

I have posted about this before, and some of you are well aware of the battles I face because you face them too.  There are many, many, many things that drive me crazy in this world, but above all is when I read that a doctor has told a patient with my disease that they don’t need a phlebotomy yet.  They can wait.  When researchers say that women are fine as long as they are not over 50.  Ha. Ha. Ha. Ha.  It would almost be funny if I didn’t know people who have died from this disease.  I am talking about Hemochromatosis and the link that is here.  While the link is very informative and has compiled some great facts, I want to show you where it is wrong.  Take a look at this child:

That child is me in fourth grade.  I look perfectly healthy.  All the while I was eating my Flintstone vitamins, drinking well water, and going out in the sun without sunscreen all the time.  Yes, it was okay back then.  If my mother had known I had a life-threatening disease we would have done things differently.  We never once thought my deeply tan skin could mean anything other than I love the sun.

Here I am again (ignore the college room and mint outfit).  I sure appear to be getting more bronze, wouldn’t you say?  About this time is when everything started going all crazy in my life.  I was trying to finish up classes and sleeping.  Almost all day.  Everyday.  I would wake up only to want to go back to bed again.  My skin was getting thin, and then the blisters started to appear.  My urine was the color of port wine.  That was the Porphyria saving my life.  I didn’t know it at the time, but it would be a few more years before the doctors would realize that the underlying cause was the my C282Y gene (HH).  I was showing symptoms long before this.

The bottom line tonight folks is that if something doesn’t feel right, it usually isn’t.  Please be your own advocate.  I read the most heart wrenching story about a mother who lost her son to this disease and he was only 35.  I always feel like that could have been me.  I have been blessed in ways that seem random, but looking back, I know divine intervention has helped.  I still have problems dealing with my “curse” and probably always will, but my focus became educating others into awareness.  So tonight, if you have lost someone to this disease, I hope you continue to promote the awareness of early detection and screening.  Thank you for supporting others in this fight.

Keep on charging the enemy so long as there is life.  ~Chinese fortune cookie, opened tonight

“You may have to fight a battle more than once to win it.”  ~Margaret Thatcher