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:

scan0071That 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.

 

 

scan0079Here 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

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7 thoughts on “Difficult times…

  1. Well said ! I am 32 years old and I too showed plenty of signs .. Luckily a doctor ran the test and discovered hemochromatosis ! No one should wait til signs to get blood letted! At the age of 31 , I was blacking out , having heart troubles and bad rhythms , skin changes , hair loss , joint damage , neuropathy ( due to poor b12 secondary to iron overload ) , CPPD , and severe reproductive issues . It’s been a long road to recovery since learning I have HH and the doctors believing the HH could be this bad this early in life . It is , it was and it can be ! Keep up the good work !

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    1. If I had to put together a list of all the possible side effects or “branch off” diseases because of this one gene, I think the list would be longer than expected by researchers. I guess the thing that still makes me most upset is that people are told to wait once they have this and that simply isn’t helpful. After almost 15 years of fighting this disease, I am lucky to have found the one nurse who believes me when I call and say it is time for a phlebotomy. I just hope others can find the answers they need. Hugs and best wishes.

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  2. I am the mother who lost her son at 35, Jason was healthy as a kid had all the good foods and vitamins…. it wasn’t until an adult that he started losing his hair and he was always dark skinned even in the winter….. he didn’t feel well most times but he also drank a little bit too…. it was when his stomach started to bloat and he started to get tired all the time and throwing up he knew something wasn’t right. but by the time he went to the doctors it was too late… his internal organs were damaged and not repairable….. I am mad because I didn’t see it and I am mad he didn’t go to the doctors I am mad and feel the doctors should now test for high iron just as they do for low iron…… I lost my son for no good reason except we didn’t know about Hemochromatosis he would be here today if we had known, we could have gotten him to the doctors sooner…. He suffered greatly in the end…. this was someone who loved life, was a great person, caring, and was taken away due to lack of knowledge. I beat myself everyday for not knowing I should have I am his mother….

    Terri

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    1. Terri, there was no way you could have known as the doctors barely know what to do with the signs themselves. My parents have beat themselves up over this too for years. I wish I could change what happened to you, but I am thankful you shared your story. Keep sharing his story and prompting others with HH to take this disease seriously and not give up. It won’t change what happened to him, but it might save someone’s life and it sounds like he would be proud of you for continuing the fight. Hugs and much love to you. Your story will not be forgotten.

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  3. I loved reading this post. I’m so sorry to learn of your disease. But hey, god gives his hardest battles to his strongest soilders. And it sounds like you really are strong, you have the right frame of mind and yes you are blessed. It’s so true what you say about if something doesn’t feel right, it more than likely isn’t. My mother has suffered with breast cancer for like 4 years, the first time we were waiting on results, my mom knew they were gonna say she had cancer, because she just knew her own body, and it wasn’t right. Recently another lump was found, and she knew it wasn’t cancer because nothing felt wrong. Both times she was correct. It really is true. You know your body. If someome dows not feel right, get checked out!

    I admire you.
    Ashleigh

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