|Shout out to my parents for taking care of me tonight!|
On Monday, I went in with my mom to work because I had a morning appointment with an oral surgeon. Even though I was feeling absolutely awful (read: sore throat, congestion, head and neck hurting, nausea, fever, body aches) I was not about to reschedule this appointment.
I have been issued some repeated warnings throughout the past year about the rheumatoid arthritis and damage in my jaw. When I saw an ENT in New Orleans for an unrelated problem, he pressed his hands on the sides of my face and asked me to open my jaw and said, "If I wasn't looking at you, I would think you were 90 years old. This sounds like the jaw of an elderly person." Ya girl was 73 years away from 90 at the time, so this was very concerning, but there were so many crazy health circumstances stemming from the Strep Throat Crisis of Fall 2016 and the Allergy/Asthma/Sinusitis Crisis of Spring 2017 that I had to make choices about which issues to aggressively address. The ENT had me put my hands on the sides of his face while he opened and closed his jaw so that I could hear and feel the difference and compare it to my own. "You have a nice jaw," I said sadly, and we both laughed even though it was not funny.
I informed my home rheumatologist of the ENT's comments over spring break, and he ordered an MRI that showed torn cartilage and eroded bone on both sides, as well as a tear on one of the discs. At the JA Conference in August, I learned that the pain of TMJ arthritis is often not as severe as the damage being done, and this certainly rung true for me. I have pain in my jaw, but I did not think it was as damaging as the scans showed.
When I went to see my dentist/orthodontist this summer for a routine cleaning, I was surprised to hear that seeing an oral surgeon needed to be a priority, and cried as I laid in the chair, confessing to my orthodontist, "I'm just overwhelmed," with the sort of honesty that only comes when it is completely unplanned. The idea of surgery felt crushing and unexpected, and so I did what any responsible person would do in this situation: I sobbed to my parents over the phone, drove to my friend Faith's house, and convinced her to watch "Christian Mingle" on Netflix with me. The day is a bit blurry (literally, from my tears) looking back, but I think at some point I fell asleep on Faith's couch from emotional exhaustion. My dad took the next day off to go with me to an appointment, and afterward we went out to eat Lebanese food for lunch and then we went to see "The Big Sick" at a movie theater with the hope of cheering me up and distracting me from what we knew would be a scary journey ahead with my jaw. We did not realize that this movie would be about a young woman with autoimmune arthritis, but hey, we did our best.
At the oral surgery appointment, we decided to do some bilateral flushing out of debris (sounds lovely, I know) and intra-articular (straight into the joint) steroid injections, a procedure which will be done under general anesthesia on the first morning of fall break. If you are looking for fun fall break ideas and would like to watch a movie and drink smoothies with me while I recover, please hit me up. I tend to be very emotional after anesthesia/when on painkillers, so if you ever need someone to cry while watching "America's Next Top Model" with you, I'm your girl.
So anyways, in the car on Monday morning we realized that I high-key needed to see a primary care doctor because I was so weak and completely not myself. Thankfully, we were able to get in quickly, but we had to leave before I could have my bloodwork done to go to the oral surgeon appointment (feeling #blessed that campus health is connected to UNC Hospitals), where I couldn't be examined because of my acute illness. No one really wants to get near your jaw when all of your lymph nodes are enormous and you're wearing a medical mask.
I went straight back over the bridge to student health, where I waited for my blood to be drawn. Normally, I try to make friends, be cheery, smile at people, etc. when I am in waiting rooms, but let me assure you that yesterday I was doing the impossible: making that waiting area in the hallway an even bleaker place to be. I was too weak to even sit up, so I was sort of halfway laying down in this chair, with my heavy head resting on my hand and a white disposable mask covering the majority of my face (we switched them out so I could have jaw x-rays taken). The phlebotomist kept assuring me that they would be ready for me soon, and when I was finally called back he immediately leaned the chair all the way back because he could tell I was not feeling well and certainly did not need me passing out.
After the blood draw, I immediately returned to student health, and this is the point of the story where I really started to lose my mind. The mono test was negative (thank the Lord, because I have no idea how I would have dealt with mono fatigue and JRA fatigue together), my white blood cell counts were all messed up, and we knew there was a sinus infection but we were unsure of what else was going on. More blood tests were ordered, as well as chest x-rays to rule out pneumonia. The word "inpatient" sent me into a spiral of tears, and when my doctor and I returned to my dad in the waiting room (my parents swapped on/off throughout the day) my white paper face mask was damp. The idea of being admitted is frankly very frightening when literally all you are trying to do is go to class and hang out with your friends, but luckily I was allowed to go home. This is the side of juvenile arthritis that it seems like no one outside of the disease understands: the severity, the fear, the pain. I have been swimming in this ocean for a while now, but the currents are still just as unforgiving.Not to brag but yesterday one of my phlebotomists said, "You're a strong one, Sauls" & gifted me an entire tissue box 💁🏼#chronicillness— Rachel of Durham (@Rachel_Sauls) September 19, 2017
The blood tests ordered were to test for an infection in my bloodstream, which, as you can guess, is not an ideal situation. It turns out that the blood draw process is a little bit different when you are testing for sepsis. Instead of an alcohol swab, they have to use the orange antiseptic that is used for surgical procedures to clean the area, and they have to draw from two different locations, because "blood circulates" (that is the elaborate explanation I was given by my second phlebotomist of the day). After having the chest x-rays done and putting my name in again in the labs area, I was feeling very nervous. I had already had blood drawn that day from my right arm, where my only good vein is. This right arm vein is reliable, easy to find, and generally easy to puncture. I love it, phlebotomists love it, and phlebotomists love that I point it out for them. Overall, this vein and I have a great relationship.
I assumed that the first of the next two locations would be my left arm, but it was the second of these locations that was causing me stress. I absolutely hate needles going into the backs of my hands (when I had my tonsillectomy in December I insisted that they put the IV in the good vein on my right arm), and I wasn't sure where else they might try. I tried to imagine all of the veins in which they might stick a needle, and there wasn't one place that sounded particularly comfortable.
When I was called back, the phlebotomist offered to use the same puncture site as my blood draw from earlier that day as one of the two locations. To be honest, I had no idea if this was a good idea, but she suggested it and it did not involve some strange vein in my foot or stomach or anything so I was all for it. Plus, at this point I had realized how serious the infection was and was determined to get some answers, and I was already crying so I basically had nothing to lose. I was so sick, and all I wanted to do was go home.
She scrubbed the orange antiseptic on my arms and promised me that it would wash off, although I still have rings of orange around my inner elbows today even after the most vigorous shower scrubbing my weak body could manage, so I will have to get back to you all on the validity of this claim. She stuck me twice, which unfortunately included one stick in which I involuntarily flinched so she had to move the needle around in my arm to search for the vein, and my blood went into some weird containers that already contained some other liquids. I finally left the student health center/hospital after almost five hours, equipped with instructions to rest, drink lots of liquids, take a strong new antibiotic, and drive straight to the ER if anything got any worse.
In the two-hour lunch gap between my classes today, I went back to my dorm room and laid down on my bed, covered by my favorite white blanket. I was planning on reading or going through email on my phone, but instead I just laid down and set an alarm. I was sleepy but couldn't fall asleep. I thought about what a social worker and patient at the JA Conference taught the young adult group, about feeling the pain instead of trying to block it out all of the time. And so I felt it, in my ankles and my knees and my hips and my wrists and my throat and my jaw and my neck and my head. I felt partially dead, like I was only half as alive as the people whose footsteps I heard in the hallway.
I am trying my best to recover. I don't know why it is so hard, or why my body can't just fight better. I still see all of the beauty in the world and am not feeling particularly sad, just frightened and disconnected from a campus that I am just now starting to call home. I wonder when this infection will be gone. I can't believe that I am on my thirteenth day of antibiotics and still have seven more days to go. Today I found myself caught up considering what my senior year self would think if she saw me. She would probably be frightened. My eyes are a bit sunken in and my lymph nodes are all swollen and I look sort of washed out. My whole body hurts and I do not feel like a college student, but rather like someone who is in a world none of my college friends have had a glimpse of, where the phone calls I receive are from nurses and I check my patient portal like it's Twitter.
I don't have any particular desire to have kids in the future, but if I do, I will tell them these stories of being sick in college. I will tell them how hard it was and how nice people are and how many tears I cried in front of medical professionals and family members and even strangers. I will tell them that even if they are passed out in the car with gauze bandaged around both arms and a wrist brace and a medical mask, they can still be strong and tough and fierce. I will tell them to compliment their phlebotomists, even if the pokes hurt, because they don't get nearly enough compliments. I will tell them to imagine themselves twirling in the Alps one day, having an unapologetic Julie Andrews moment, when their world seems to be disintegrating. I can feel myself growing wiser, in the strangest of ways, yet this feeling has come married with an unwanted awareness of my own mortality, and a deep understanding of how fragile our bodies really are.
Mostly, I just miss my friends, in the simplest of ways. I want to hear about their days and hang out with them and laugh with them. I live so close to campus but I feel like I am falling behind in making connections, considering that I have to cancel every other commitment due to an infection. When I am around them I feel quiet and limited, because I don't know how to explain how broken I have been these past few days, or if that is even a narrative they are interested in hearing in its entirety. Juvenile arthritis is a cruel disease, painful in every sense of the word.
I am lucky to have people to miss.