No one who has listened to my medical story from last few years has ever failed to give me a face of pity; they hear about the year I spent searching for a diagnosis for my debilitating pain (which doctors kept dismissing) and the failed procedures and surgeries and always say something like “Ugh. So much for someone to deal with, especially such a young girl!” These sentiments, though well meaning, have always frustrated me because they leave little room to explain how, though I would never wish Nutcracker Syndrome on my worst enemy, and I would like nothing more than to be pain free, I do not spend time wishing I never got sick. This is not to say things have been easy, but Nutcracker Syndrome has taught me who the most important people in my life are, as well as forced me to learn to take good care of myself from a young age.
I first started experiencing symptoms of my compressed left renal vein in the summer of 2014. I was set to be a junior in the fall at Ithaca College studying Occupational Therapy and I was lucky enough to land an incredible summer internship with the Visiting Nurse Service of New York. There, I got to work at Bellevue Hospital getting patients who needed home care services ready to leave the hospital, as well as work with Occupational Therapists throughout Manhattan, providing care to patients unable to leave their homes. It was not until this internship that I was sure I had picked the right major. I loved it all. Every day was exciting and I could tell that I was making an actual difference in peoples’ lives. Unlike Physical Therapists, who usually work on exercise machines and stretching with their clients, Occupational Therapists focus on getting patients to be able to do the tasks they need and want to complete, from cooking, to childrearing, to playing, to being able to get out the door in the morning. This allows Occupational Therapists to continuously come up with creative solutions to make life easier, and it usually means people do not dread attending their therapy sessions. I was excited to continue my studies with the confidence that I was following a path I would really enjoy.
By the time I had completed my internship and was back in Ithaca for classes, the occasional abdominal and pelvic pain I was getting the summer had developed into a constant pressure all over my lower body. This pressure seemed to suck the life out of me. I wished to be asleep every moment of the day because of the never-relenting pain, and no matter how much sleep I got, I was always tired. My personality changed and I watched myself become a crotchety 20-year-old. I would hear myself getting upset with friends and family and it felt like I was watching someone else. Anger and jealousy towards those not in pain made it difficult to maintain my relationships, and that combined with the fatigue made me isolate myself in my bed a lot of time. Through it all though, the one positive anyone could think to tell me was that this was going to make me a great occupational therapist. At first this didn’t console me much, but after so many disappointing and frustrating doctors’ appointments, I began to see how extreme the benefit was to have healthcare providers that understand and are empathetic to chronic pain.
In addition to the social struggles that came with my chronic pain, I found it quite difficult to get through my basic daily routine as a car-less college student. Every time I stood the pressure increased, so walking and attending classes, shopping, and cooking were all impossible for me to do half the time. Luckily, I am in a program with sympathetic professors who allowed me extensions and flexible attendance which kept me in school through the fall semester of 2014. By the time I was finally diagnosed with Nutcracker Syndrome in the tiny ER near my college apartment in January, at the very beginning of my spring term, I was desperate for any answers, as I felt like I was going mad from this unexplainable pain.
From my diagnosis, I went on to have a failed left renal vein transposition and two failed stent placements. Although the procedures did not eliminate my pain, they lessened it enough that I was able to complete my undergraduate studies and graduate magna cum laude with a Bachelor’s of Occupational Science. Though it was not easy to do this in chronic pain, I believe I was able to do this, partially, because I was taught in my studies of occupational science about the importance of self-care. Because I knew this was important, I could seek out free and reduced services such as massage therapy and acupuncture to help manage my stress and the aches and pains that come along with Nutcracker Syndrome. These services did not ever rid me of pain, but I always left feeling better than I entered. Another aid to me through my most difficult times in pain was the close network of friends I have built up at my college. Although some friendships dissolved because of my isolation, it also showed me which friends would be there for me no matter what.
As independent as I tried to be through this entire process, there were times when I just needed to be taken care of. The night I taxied to the ER in my college’s town in unbearable pain and left with a diagnosis I was broke, overwhelmed, and desperate to be home. I must have contacted 10 good friends asking for a ride but all were too busy or incapacitated to swing out to the hospital. Out of desperation I called an acquaintance I knew from a college club. He graciously agreed, refused any money, and made sure I got in bed safe that night. We’ve been dating for two years and there has never been a time since then when I needed him and he didn’t show up. His support has been a big reason I have continued to search for answers to cure my pain.
On the day this essay is due, I will exactly one week away from my auto-transplant with Dr. Sollinger. I am hopeful that this will finally be the cure for my pain and I will be able to continue my graduate studies and become and occupational therapist. If I was advising someone recently diagnosed, my best advice would be to be good to yourself, surround yourself with people who will show up, and try to find something good to do with your pain experiences so that they are not for nothing.
