Saturday, June 26, 2010

An Old Friend

She's an old friend that I no longer want in my life but don't know how to tell her. I don't speak her language. She is silent but demanding. When she's around, she calls the shots. If I want to work out, she gives me enough time to feel alone before appearing and telling me to stop. She has an entourage - fatigue, nausea, stomach cramping, headache. She's an old friend that comes and goes with free will, but I don't want to be her friend. Her name is Vertigo.
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3 comments:

  1. melissaJune 29, 2010 at 12:34 PM

    Hi Jan, I’m Melissa and live in the Dallas, Texas area. I came across your blog a week ago while researching this strange disease called porphyria that I have never heard of, and I’m even studying medicine! I’ve been asked to do the 24 hour PBG test but when I saw your self urine test I decided to give it a try. Ours ended up the same, mine started a little more yellow when it came out but after a few hours turned to a strong tea/dark honey color. My doctors aren’t very kind so I wanted to ask you to make sure I understood that your doctor did say that nothing other than porphyria would make urine do this in the sunlight? …..This is funny…..Hi nice to meet you now lets talk about our urine?!...I looked for a way to send you this via e-mail but I’m new to “blogs” and couldn’t find anything. If you like to e-mail my address is Melissa.jill72@yahoo.com. Like you I’m very frustrated and angry that I’m looked at as a “drug seeker” or crazy!

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  2. JanJune 30, 2010 at 8:19 PM

    Hi Melissa. I'm so glad you found my blog! Sorry you are struggling to get answers, but it is very normal for this disease and part of almost every porph's story. To answer your questions, yes my doctor made it very clear that porphyria is the only thing medically (meaning part of a disease and not related to drugs/medications) that can make your urine dark amber/purple. He is also clear that only porphyria can turn a person's urine from yellow to dark in the sun. I suggest taking pictures of the sunlight test and bringing them to your doctors. This won't give you a diagnosis, but in my case it kept proving my case and kept my doctor on the right path and gave him more motivation to continue ordering tests. I'm here if you ever have questions, want to know what other doctors are ordering/doing, or just to vent! Sometimes you need to know that others are going through the exact same thing... and right now that means fighting for a diagnosis. And yes, that means a lot of urine talk :) I'll add my email address to my blog so readers have better personal access to me. I hope you continue doing well and please keep reading and writing!

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  3. AnonymousJune 28, 2011 at 10:10 PM

    Vertigo's a bitch! Don't talk to her!

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