Porphyria Testing Day

You would think I would feel exultant or exhilarated,
But I just feel Totally Exhausted.

And that was how I felt before I even left the house this morning.

I made sure to eat and drink well. Went to Dr. Ponti’s. The blood draw did not go well.
We got three lavender tubes of blood out of my left arm but then it clotted.
So she went to work on my right arm.

The pain of the needle in my right inner elbow was so severe I was transported right back to when I was 15 and I cried in the car on the way to the lab and told my mother, “I can’t take it anymore. This is the last blood draw.”

I recall later years having technicians bleed veins in my outer arms and even fingertips,
because I could not stand the trauma of my inner arms being bled anymore. I guess its scar tissue.

Well today I just told myself to grit my teeth through the pain. In five more minutes it would be over, but either from the pain or the blood loss, I suddenly got a wave of nausea and uncontrollable dizziness. I warned the doctor, and she took excellent quick action, got me lying down, a cold rag on my face, and then my feet over my head.
She kept me from entirely losing consciousness.

Only I cannot sustain having my head lowered as that hurts my head pain too much.
So back up with me.

And Bless Dr. Ponti. She brought me a tall cold glass of water. I drank it. We looked at each other and said to each other, “Let’s get through this.”

She went back into my left arm, got two more yellow vials of blood, she put it in a biohazard bag and sent me on my way.

She doesn’t think its porphyria, simply because it is so rare. But she says the possibility is interesting.

All I know is that I can’t take being sick and in pain anymore.

And that I am thankful for Dr. Ponti because a lesser doctor would have given up, would have quit, would have been scared off by me trying to black out. She simply took charge, waited the necessary time for me to recover, and went back to complete the task.

So then I was just in so much pain as the sort of stress pushed my head back over the edge but also that right arm shot pain back through my shoulder and to the head also. I took ibuprofen and ate and drank, hot chocolate and a salami sandwich standing up in the kitchen, trying to think of how much it would cost for someone to kill me quickly. The important part is that they are thorough and make it quick. So you don’t want to underpay someone.

I packaged up the blood in layers of biohazard bags, bubble wrap, paper towels, box within box, and I just prayed it would stay intact and make the journey.

Went to the Fed-Ex down in Eatontown where I had done a preemptive journey last week to make sure this would all go like clockwork. I walked in with the biohazard packaging they had given me, to have them tell me they could not accept it.

I thought oh my god I am not well enough to take it to NYC on the train or to drive up there. But they told me I could take it to Fed Ex headquarters, just a few miles away, so I did that, and a wonderful helpful woman sent my sample on its way, to arrive tomorrow morning by 10:30 am at Mt. Sinai Genetic Testing Labs.

So Mission Accomplished.

But it was a lousy day.

Tomorrow back to the neurologist.