Porphyria and Survival
As I ended my last blog, I mentioned I had approximately 3 months to get “better”. Let me explain.
There is no cure, so my idea of getting better was to get my condition under control. Maybe you have never felt your life spiral out of control, but I can tell you that it is a scary feeling. I believe in fate, destiny, and above all else God. I started looking back at things that had happened to me over the last few years in college, and I realized that it could be worse. When I said I knew I did this to myself, I did. I started having beverages, let’s call it that, at age 15. It wasn’t a secret. I thought I was drinking “responsibly” as my parents knew. I did not drive anywhere while drinking, but I hung with an older crowd, and then I went to Spain for a trip while in high school, and had my mom write a note saying I could drink sangria while on my trip.
In college, I pretty much did the same thing, and maintained such high grades I was asked to be in two honors fraternities, one service fraternity, one sorority, serve on the student council, become a student ambassador, tutor students, and take a class in Europe for a few weeks. Sleep much? No. Who needed sleep.
All of this caught up to me I thought. By my last year in college, I could sleep all day long. My limbs felt heavy and I needed complete darkness. I no longer wanted to get up and go to early classes, which was not like me. I was tired beyond belief, and exhausted to my core. Luckily, I had already met my future husband. He let me sleep and took care of me. We went out less, and stayed in more. I had no idea that was just what I needed, and that my other lifestyle was literally killing me.
Now, back to the summer of 1998. The dermatologist sent me to a new doctor. One place I didn’t really want to go, but apparently, the only place that help me. The local oncologist who just happened to be an expert hematologist as well. I could drag this out and tell you about this in much more detail, but I won’t. I am not a medical professional; I am merely telling you this from my perspective. It’s hard to unwrap your feelings when you have suffered the loss of someone close to you from cancer. Going through those doors into that building was very difficult.
Then I went back to the lab, where big signs were posted about no children beyond this point. I guess they didn’t mean me. I follow a nurse to the back, where everyone is looking at me. Yes, I feel that way because I have a full head of long hair and I am young. I sit in a reclining chair near someone, and I want to cry. Not for myself, but for them. I am not thinking of myself at all, and think how ironic it is that I am here. No wonder my grandmother never let anyone go with her. We are strong women. I can do this.
A nurse comes over and sticks me with a huge needle. One of the biggest and most painful to slide under my skin, but I got this. I am fine. Going to get “better”. She hands me something to squeeze and the blood starts flowing into the bag. I watch with mild interest until I get light-headed as it apparently left pretty fast. One pint down, many, many more to go. I get crackers, some soft drink, and she puts my feet up. This is how it goes every single week. One pint a week. Lab results, Doc coming to say hi, getting to know the office staff, and nurses by name. There was a time when I had to get in the bed for one of my visits as I just didn’t want anyone around me anymore, and I asked if I could just please have the quiet room. I was new to all of this and got tired of people looking at my pint of blood since I was the only person having that done in a room full of people getting clear fluids. I think that was the time I almost fainted. I kept going anyway. This was not going to stop me. I got this. I can do this. If my grandmother could fight, so could I.
During all of this, my mom took me to find gloves so I could sleep at night. We bought every cream on the market to stop itching and none of it worked. I slept with gloves on my blistered hands. I looked at the scars on my arms and prayed they went away in time for my wedding. Oddly enough, I modeled my wedding dress after my grandmother’s so it had long sleeves and a long veil. In the hottest month of the year, I picked a dress like this before my condition came out. Things happen for a reason.
Slowly, the phlebotomies started working. Since there is no cure, you must have pints of your blood removed throughout your life. Since this is getting longer than I intended and I have shared more than some of you wanted to know, I will end by saying I made it to my wedding day with no blisters on my hands. If you looked closely, you might have seen dark patches where they once were, but no blisters remained.
Two years later, we had a healthy little girl. Sometime during this time period, the doctor realized my iron levels were still abnormally high. I would be tested again for a new disease. One that made all the pieces fit into place. But that’s another story.
“Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe we are gifted for something, and that this thing, at whatever cost, must be attained.” ~Marie Curie