Sunday, November 22, 2009

Sickness & Health

This one has nothing really to do with being a nerd. Well not directly anyways. I think if I had not had so many health problems that I would not have found the comic books in my grandmother's house. Nor would I have spent so many hours watching sci/fi tv or reading so many odd books.
I have been seeing so many people complain about having health problems & going to the doctor only to be told that the doctor doesn't know what is wrong. This is something I know more about that I care to. As mentioned before, I used to suffer from a genetic blood disease called porphyria, more specifically the type is known as E.P.P. mainly 'cause no one, including doctors can pronounce it correctly. I was a medical mystery, doctors couldn't explain what was causing so many health problems. None of them ever connected the dots that all of my health issues were caused by one thing. My muscle pain, photo-sensitivity, excruciating stomach pain, constant nausea, I had come to find were all caused by one thing. It is an enzyme deficiency & is difficult to explain, I was born with it & only half way understand how it works, plus there are 8 different types of porphyria & each type depends on the enzyme & each one affects the body a bit differently. For mine the body didn't make the correct amount of a certain enzyme that helps the blood cells form. When the blood cells are made, some of them are made incomplete, as to almost look hollow. I was told that under a microscope it looked a lot like sickle cell anemia because the way the cells were hollow & couldn't hold onto iron, which made the cells die very quickly so they couldn't function in the manner that they were supposed to.

It took me too long to get a proper diagnosis from doctors then once I finally did get a confirmation that I had E.P.P. I had local doctors telling me that because they had never heard of it that I didn't really have it. They almost killed me because of their own stupidity. I was pointed in the direction of a good doctor who took me on as her patient & even though she didn't know much about the disease, she took it upon herself to learn everything about it. She is a hematologist & the disease is so rare that the only time she had heard of it was when she was in school. She helped fight for my life when I was too weak to fight for my own. She was a God send & I was so thankful that I was able to share my healing with her & her entire office. I am a rare one, not only was I born with a disease that is almost completely unheard of & tried to kill me, but I was healed of the disease. The doctors have done tests & have found that everything is normal, no trace of this genetic disease that afflicted me for 30 years. I have been healthy for over 2 years now & I have spent this time trying to live the life I didn't have the ability to live before.

I am still the nerdy girl who plays a certain on-line video game (City of Heroes). Still collect comic books when I can afford them. I still think I might go into a coma if I lost my computer & the internet. The obsession with Doctor Who has only grown in my time of being healthy, I think it's because I have more energy to obsess over it. My personality & interests didn't really change when I was healed. It just gave me a whole different perspective on life. I still don't know why God chose to heal me because I am a crude, foul mouthed, pessimist that was shown first hand how horrible people can be.

I want all of you out there that suffer chronic illness to know, there is hope. I also want you to know that you need to make some noise, scream if you have to when a doctor gives you some lame dumbass diagnosis. Ask tons of questions, do some research for yourself, challenge the doctors until you find something that makes you better. I was afraid to make a fuss, thinking the doctors knew what they were doing. When it comes to very basic stuff, they do, but when it gets complicated they need to be challenged. Yes many of them hate it, but if they would take the time to do their job correctly we wouldn't have to challenge their opinions.

1 comment:

  1. Hi. I just found your blog from twitter and I can really relate to this post. I have Crohn's Disease and Celiac disease and have suffered years without knowing why. I'm sorry to hear that you have to deal with sickness. My story is different of course, but similar, in that I use my love of sci-fi, gaming, comics etc to cope. In fact my blog (chronic geek) is so named in part because I've always been a geek and because I'm chronically ill. Hang in there and take care.

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