Urine. What a fun topic.
On this occasion, all the tests came back normal for a possible UTI…urinary tract infection. I know it’s a fun thing to talk about, but you can’t ignore the color of your urine…especially when it is a dark burgundy. I had just gotten over my first health scare of 1998, and I was in for a wild ride that would last the rest of my life.
If I had been someone fictional like Dr. House, perhaps I could have sorted out my symptoms right away and made a great big flow chart of some sort or bounced a ball to find the right answer. I would have realized that when I was working, I got cut easily and started bleeding all over without realizing I had even hurt my hand. I might have noticed I had thin skin when some of it came off in a horrible way (painful). Additionally, I would have realized how extremely exhausted I had become, and perhaps planning a wedding during all of this, should not have made me so tired. However, I was working for the first time after college so I wanted to make a good impression, and I let things go. I was puzzled by these oddities, but since I was still dealing with the cervical issues, I failed to notice how strange things were.
All that changed when the blisters came. The painful bubbles started appearing on my hands and some grew to be the size of a dime. You might think this is an exaggeration, sadly, it is not. The welts would pop open and leave painful scars for weeks and the skin would be tight and itchy where the blisters had been.
Did I mention I was getting married? Think wedding portraits. Ha.
Anyway, I go to my primary care physician at the time, and she looks me up and down. She says she has no idea what is happening to me, but she knows of someone who can help. A dermatologist. Somehow, I get penciled in. At this point, my hands are hurting me so badly at night I get little to no sleep. The skin itches constantly and I am in pain.
My life is falling apart and I am only 23 years old at the time.
I sit on the crinkly paper and wait for a doctor who I hope will have answers. Telling a story, I already told twice, and hoping that this third time was a charm. As she looks at my face, arms, and hands, she gets a worried look on her face and asks if her colleague can come take a look. Sure, the more the merrier. He comes in and mentions he is also her husband. They haven’t seen a case like this…well, maybe ever. The good news is that they happen to write a paper on it in medical school. They whisper in undertones and I hear all kinds of strange-sounding words. Latin I think to myself. Great. Just great. This can’t be good news. They seem to notice I am still in the room. Since I ask a lot of questions, I get right to the point. Please tell me what I have. They seem calm when they tell me that I might have porphyria cutanea tarda, but don’t look it up. Famous last words. Don’t look it up. They didn’t know who they were dealing with here.
Never tell me what I should not do.
Highly ineffective strategy.
“What lies behind us and what lies before us are small matters compared to what lies within us.” ~Oliver Wendell Holmes