When I was in the sixth grade, one of my teachers asked me how my treatment was going. I remember taking a moment to think, feeling overwhelmed by the question. I was not getting any better, and nothing my medical team was doing had taken effect yet. I was going to appointments constantly, but I was still in a lot of pain. I finally blurted out, "Everyone is taking my blood."
Of course, I was referencing the many blood draws that my medical team always seemed to need. Blood has always felt very important to me, and rightfully so, since it plays such a crucial physiological role in human health. I have become a pro at blood draws, and I am convinced that I could draw my own blood better than some phlebotomists at this point in my career as a medical patient. I know where to tie the painful rubber band, how to pump my hand until the vein is visible, which of my veins is best to use, and how to take the needle out manually before retracting it. Yet every time the phlebotomist starts to stick the needle into the crease of my elbow, I feel my heart flutter a little bit, like I'm still not sure whether or not this is okay with me.
I used to be surprised by the volume of blood they took from me. I wondered how much I had left, and if I could replenish my supply quickly enough. Even now, it just seems like after a certain amount of time they will have taken all of my blood, and what will be left of me?
There are good and bad phlebotomists, and interacting with them is always an experience in and of itself. The best ones are pros at drawing blood and take a lot of pride in their profession. The worst one I ever had questioned my pro-feminism shirt and made many sexist comments. Unfortunately, it is very intimidating to argue with someone who is about to stick a needle into your arm, so I did not defend feminism as well or as thoroughly as I wanted to. To top it off, I was stuck many times at that particular appointment, which was only about two months ago, before blood was found.
When I used to have rheumatology appointments at the children's hospital, I would always be sent down to phlebotomy at the end of my visit. During one particular appointment, I limped in, exhausted from the exam and in a lot of pain. I was frustrated with the lack of treatment I was receiving, and wishing that I had more options as far as choosing my own rheumatologist. Despite how horribly the appointment went, I managed to maintain my composure the entire time, and looked pretty stable when I stuck my arm out expectantly on the beige table. My phlebotomist was very kind and calm, but as soon as her needle punctured my skin I burst into tears. She was concerned, and her face writhed with my pain, but she proceeded nevertheless, afraid that withdrawing the needle would only hurt me more. "What's wrong?!" she asked, surprised by my outburst.
"I'm sorry," I said, unable to wipe away the tears slipping onto my sweater due to my hurting hands, "I'm so sorry. It's not you, it's just been a long day." While this incident was horribly embarrassing, and a bit humorous in hindsight when I think about how pathetic it was, the phlebotomist was understanding. She attempted to reassure me with some comforting words that I paid little attention to before patting my hand and sending me home.
Sometimes, I break. It usually happens at the most awkward and inconvenient times, which I will say makes sense considering how awkward I am in general. It often takes people, such as my phlebotomist, by surprise. I can see how it would be easy for her to take it personally, or to assume that my tears were a response to her prick. I do not fully understand where the line between "okay" and "a mess" is and how to predict when and where I will cross it. I suppose I am still learning.
That said, I "broke" again at my most recent rheumatology appointment, which was on Tuesday. The appointment went well, but then came the labs. I waited outside the infusion and blood draw room (basically a needles room, if you ask me) for what felt like forever, replaying the appointment in my mind, thinking of all the things I wish I had said that I didn't. The phlebotomist was not using a butterfly needle, and I was too fatigued to make that request. She stuck me very well, but I am almost certain they took more vials of blood than they ever had before. I watched the maroon liquid fill the tube, and I knew it was my own, but it felt foreign to me. Am I my blood? Is my blood me? Every time she picked up a set, strategically interweaving the vials between her gloved fingers as they filled up with the fluid that I knew would be analyzed solely for its imperfections, I figured it must be the last one. Yet she had a whole bucket of different tubes, and I felt rather bloodless.
By the sixth vial or so, I was teary and worked up. The phlebotomist asked if I was okay, but seemed to understand that I was just in a state of distress and that my pain was in my joints rather than in my arm. I nodded and laughed unconvincingly, but she let it go, which I very much appreciated, because I really did not feel like explaining everything to someone I didn't even know. When she finally retracted the needle, my bleeding did not stop, and soon a pool of blood formed on my arm and splattered onto the chair. We wiped it up quickly with gauze and applied some serious pressure, which, thankfully, distracted me enough to stop my crying. Part of my arm was soaked in a disgusting mixture of blood and tears, so it's definitely not a life moment that I'm proud of.
Everyone is taking my blood, in a million different ways. During flares, I feel as though all of the life has been sucked out of me. I wonder if the treatment is hurting me more than the disease itself. I wonder if my health would improve if I stopped going to doctors and stopped letting them take my blood. Of course, realistically, I know that this is not true. I have a huge problem with homeopathy and natural remedies, though I suppose if they work for some people I have no reason to oppose them. I need my doctors, and I need my healthcare team. I just wish they would let me keep all of my blood.