Saturday, November 18, 2017
As many of you know, I saw another new rheumatologist this past Monday. I am happy to report that the experience was excellent. After taking my history (which we both admitted was quite extensive) and performing a clinical exam, she looked me in the eyes and said, "I believe you. I don't know what's going on, but I believe you." I am so grateful that she said this. For the entirety of the #MysteryIllnessCrisisOfFall2017, not a single soul had said this to me, neither a doctor nor a friend. I did not realize how much I was longing to hear it until the words came out of her mouth, and for the first time in several months I felt like I could breathe. Intentionality is everything. This is likely to be a good patient-doctor match.
The new rheumatologist and I laughed about what a mess I am together before talking through several different options for next steps. I requested a referral to physical therapy, where they will be helping me with inflammatory hip issues that have been bothering me over the past few months. We are starting me back on my Arava (leflunomide) and a biologic that I have not yet tried, Humira. If any of my arthritis/autoimmune friends have been on Humira and would be willing to share tips, it would be much appreciated! I hear it is excruciatingly painful but effective for many people. I will be doing the at-home syringe injections every two weeks.
Between the fevers, the death of my dog, other painful symptoms, outside scenarios, and an overwhelming amount of academic assignments, I am low-key having a terrible two weeks even in the midst of the semester that is trying to destroy me, so if I have not responded to your email, message, or text, please know that I received it and that all of them have been so encouraging to me. Thank you for your kindness. I read every single message multiple times and cherish each one of them.
My friend Alana has put up with my struggle so compassionately this week, so I would like to thank her for cheering me up, listening to my complaints without any trace of judgement, and making me laugh during my nighttime fevers while we "did homework" (read: hung out in the student center with our assignments open on our laptops). I am thankful for sweet friends with lots of love to offer and smiles to share.
Even though I have been living with chronic pain for about seven years now, I still sometimes feel absolutely suffocated by the notion of never breaking free from the body that entangles me in the cruel stabs of invisible knives and silent agony of unrelenting aches. I am thankful for friends who make space for these worries of mine, and who acknowledge that they do not always dissipate with time, but rather fade in and out.
In one of my classes this semester we have been talking about illness narratives, and about listening to people's own account of their health experiences. It has allowed me the opportunity to ask some people, "What is it like to live with [condition]?" In asking this question, I have been forced to confront the reality of how infrequently we take the time to fully soak in someone else's narrative rather than constructing our own. We are quick to notice the little things, like our friends having to call their doctors or getting injections or going to the hospital often, but we rarely step back and ask about the big picture. I would encourage you to ask someone that this week, if it feels appropriate and if it is a question you think your friend would be comfortable answering. You might be surprised by the response you receive or what you learn.
I would like to thank my friends Marissa, Marisa, Laura, Annie, and Erica for helping me remain in my classes this semester by sharing their notes with me when I am absent from class and keeping me caught up on the material. This is a story for another post, but I almost withdrew from the semester due to my health. These fabulous friends encouraged me, supported me, and assisted me academically, even though I just met all of them this year. I am lucky to know such wonderful people.
I want to end this post with the happy news that my arthritis twin Paula, who I met at the JA Conference in Indianapolis this summer and whose journey with juvenile arthritis has been absurdly similar to my own, is blogging now! You can check out her writing here. Paula escribe su blog en inglés y español. Yo recomiendo mucho que lo leas, especialmente si estás buscando para información sobre las enfermedades crónicas - es un gran recurso para las personas con y sin artritis y sus amigos. I am so excited to read your future posts, Paula!
This semester will be over very soon, which is a good thing because I frankly don't know how much longer I could make it through. My dad and I are visiting New Orleans in between my last exam and my surgery, and I am SO excited!!!! I cannot wait to see all of my Tulane friends and visit St. Anna's, my NOLA church. I just have to make it a few more weeks, so if you have any excess strength or energy please send it my way and I promise to use it wisely.
Monday, November 13, 2017
|Bella & me last Monday|
This afternoon I am seeing a new rheumatologist for the first time, and to be honest I have lost some hope and am not expecting much from the appointment. I am so exhausted. I am scared of whatever happened to me so acutely over the past several weeks flaring up again, especially since I am no longer on any medications for my arthritis except for an NSAID. I am trying very hard not to give up. My only other upcoming appointments are with cardiology at the end of November, surgery in December, and ophthalmology and my old rheumatologist in January. I am feeling glad to have less appointments, but also frustrated because we really haven't gotten anywhere at all aside from ruling things out.
I think there is a world somewhere out there where Bella is running around on joints free from any pain, chasing tennis balls and befriending swans and cuddling with her toys. I think we all get to enter that world at some point. Sometimes I wonder if people think I am religious just because I am sick; are my beliefs just a coping mechanism? I don't think so. I think I genuinely believe all these things about a better place. But I also think that if you believe them just because you are hurting, that's okay too.We should all be a little gentler with each other.
Saturday, October 28, 2017
A lot has happened since Mortality Beach Day. Between visits with/referrals to rheumatology, pediatric rheumatology/immunology, oral/facial surgery, ENT, infectious disease, dermatology, pediatric cardiology, pediatric gastroenterology all in the past two months, I am feeling bounced around and exhausted. We seem to always go back to some sort of rheumatological problem, but we do not have a name or cause. These are hard times.
|Shout out to my beautiful friend Spencer for this lovely post-operative gift!|
Sometimes I wish I could bring a scrapbook of my life with me to show each new doctor I see. I want to tell them that I once fell in love with the city of Krakow, that going to Target with my sister is my favorite thing, that twice I built gingerbread creations for a national competition, that I live for excessively long walks in Audubon Park. I want them to see me as a person worthy of being well. I want them to understand how far I am from my best state so they feel the urgency I feel in figuring this out and returning me to a healthier state.
Perhaps the cruelest part of this entire thing is that the period before a diagnosis is the most challenging. It is when you need the most support, yet have no idea how to ask for it, because you don't even know what is wrong with you. All I can do is try to describe symptoms, abnormal tests, appointments, and procedures. Sometimes I feel like I am telling my friends just to remind myself that all of this is real, that it is happening, that I am not crazy, and then I feel annoyingly self-absorbed for talking about my own problems so much, and I feel like people must be pretty tired of hearing about my illness because I have been sick for literally the entirety of my college experience. The funny thing is that if someone told me that they were annoyed, I would be in complete agreement. I am so sick of this always being on my mind. I want to go back to Krakow and Target and gingerbread creations and Audubon Park.
|An early morning upper endoscopy|
that took place on Thursday.
I am trying to stay at school and on campus as much as possible, because I desperately want to make friends and keep up with the friends I have, but it is sort of like when you have the flu and you just want to go home. Friends have been visiting and hanging out with me and watching "The Great British Baking Show" with me, which has helped immensely, but when I am alone I crave the presence of my mom and my cat, and I find it more difficult to distract myself from pain and discomfort in the quiet.
Last night I went to see a show and hung out with friends, typical college things that I should definitely be capable of doing. My heart was so full. And then I got back to my dorm and was overcome by muscle spasms, lung tightness, and nausea. I fell down on the tile in the hallway, not hard but enough to embarrass me and strip me of some of my dignity, and I threw up in the bathroom, and when I used a breathing treatment, which I felt was necessary given my tight lungs and nausea, I found my heart racing and my body shaking. It was a defeating and humiliating night. I felt completely betrayed by my body. I felt embarrassed by my symptoms.
Perhaps I am too hopeful about finding answers. Maybe we will never know what has caused this odd myriad of symptoms. I am admittedly quite daunted by the prospect of more appointments and referrals and tests. I feel frustrated that we have resorted to pain control, because it is a Band-Aid solution that is masking a problem rather than treating it. I am frustrated with myself, because I am so intimately close to the problem yet cannot identify it, and I wish I was feeling stronger and crying less. I wish I was better at advocating for myself, and at the same time I don't want to come across as a jerk or a difficult patient to the specialists I am sort of reliant upon at this point.
These are hard times.
Saturday, October 14, 2017
When I confessed to my mom that I was just dying to walk barefoot on the sand, alongside the water, she became her usual practical self and promised me that we could go on Saturday. I like to think that she actually wanted to go and was not just trying to stop me from impulsively purchasing an international plane ticket, but either way, it worked out for me. "I've always wanted Bella to get to see the ocean," she said, laying sympathetic eyes on our slowly dying German Shepherd, who has bad arthritis and some degree of paralysis in her hind legs. Somehow Bella and I have ended up both looking into the future at the same time, unaware of the extent to which our bodies are breaking down. We struggle with our joints but we are both so happy, and day trips to the beach are enough to warm our hearts and make life worth it. I like to think we have a lot in common. Considering my circumstances and Bella's, I fondly named this mini-trip "Mortality Beach Day," and spent all week looking forward to breathing in salty air.
October 12th (Thursday) was World Arthritis Day, and I was so touched by all of you who wore blue, posted to social media, and sent kind messages. It was so fun and such an honor to see all of my friends, with and without arthritis, posting about something that affects me in such a constant way. From the bottom of my heart, thank you! Overall, besides the stress of trying to figure out how in the world I am going to keep up with school given my pain levels, medications, and appointments, it was a lovely day, and I got to catch up with my best friend, have dinner with a new friend who I already love to pieces, and go on a walk with an old friend who is always willing to listen. I cried literally everywhere - outside of my English class, in my dorm room, and in our student union - but I have essentially given up on pretending to be strong. I am weak and sick and sappy. I am medicated and in pain. I am not going to waste energy holding back tears. There is no energy to waste.
Unfortunately, my World Arthritis Day ended with a trip to the emergency room. We are still not sure exactly what is going on, but we are hanging in there until my pediatric rheumatology appointment on Tuesday. My whole life seems to be up in the air, and everyone is struggling to pin it down in their own way and from their own position. My friends don't know what to say, my doctors don't know what to say, and I don't know what to say. I am feeling afraid of everything, from walking by myself and potentially falling to upcoming surgeries to how I will hold down a job in the future. I am in a lot of pain. I feel unexpectedly confronted by the idea that my body is fragile, and that it will not last forever.
I also feel very big picture, like I have zoomed out of my life and am thinking about all of the more important things, like who I have loved and how well I have loved them and who has loved me and the places I have been. I have seen Honolulu and Budapest, Rome and Juneau. These are things I have been thinking about every day, even while befriending surgery schedulers and worrying about little things like assignments and appointments and muscle spasms. The world is so, so big.
Thankfully, I rested yesterday (after getting home from the emergency room around 5:30 on Friday morning) and so Mortality Beach Day was a go. We packed sandwiches and grapes and blackberries and our two dogs, and the six of us drove away from the hospital and home and school. We walked and splashed and sat and breathed. It was everything I needed. I thought I might be very emotional upon seeing the water, considering all that I have been through lately, but I did not feel overwhelmed, I just felt at peace.
My sister Hannah and I spent lots of time taking pictures. I want to have plenty of pictures of Bella, because she is the best dog I have ever known, so I kept the camera on me constantly. When Hannah was taking pictures of me, she gently suggested that I pull my sweater up a bit, to cover the white lidocaine patch that is on my chest for 12 hours every day. She did not want me to look back at the pictures later and be disappointed that it was showing, especially since this trip was supposed to be an escape. I thought it was kind of her to make the suggestion.
I wish I had more concrete answers to give or solidified medical details to share, but I am limited both in what I am sure about and in what I am willing to say. Everyone has shown me so much love and support as I have struggled. Professors, former teachers, Tulane friends, UNC friends, classmates, Governor's School friends, and high school friends have all reached out in ways I never anticipated.
I would like to specifically thank Amelia, Faith, and Kayla for the unreal kindness they have shown me this week. There are some moments so broken that they become holy. There are shared spaces of suffering that cannot be recreated in words. I am thankful for friends who are willing to stick by an eighteen-year-old whose body is destroying itself, because I am certainly not the picture of fun and cannot help but feel like I am disappointing everyone. "I am so proud of you," one of my friends told me this week after I called her. I was sobbing and terrified after ten vials of blood were drawn from me in one sitting and diseases that scared me were named aloud by a specialist. She complimented my decision to reach out for support, and I was totally shocked, because I could not believe that someone could see anything positive in me in that moment. How is it possible that I know such wonderful people?
Monday, October 2, 2017
My ribs scream out in pain, reminding me to ice them and to lay down and to stop moving. The muscles in my neck make me involuntarily squeeze my eyes shut every once in awhile. All of the forces in my body try to push me closer and closer to my bed even when I am ready to be far far from it.
I tried to do a good job today. I went back to my room in the early afternoon and promised myself I would rest. I composed a five paragraph email to a professor explaining why I needed to take his midterm on a different day. Chronic illness is exhausting.
All in all though, I think I have to count today as a good day. I called the office of the doctor who specializes in exactly what my body needs a specialist for (as mentioned in my last post), and was shocked to hear that the earliest appointment was in January. This was much earlier than I had anticipated; I had mentally prepared myself to hear "March" and decided that I would only freak out if it was later than that.
I eagerly accepted the January appointment, and then inquired about a cancellation waiting list. The very kind nurse on the other end of the line, realizing that I was trying to be seen as quickly as possible, did some thorough searching and was able to find me an appointment... two weeks from now.
If you know anything about pediatric rheumatology, you know that a new patient appointment in two weeks is an absolute miracle. I almost cried tears of joy and disbelief, and believe me, this was a much different on-the-verge-of-tears experience than the many I have been having over the past month. I thanked the nurse profusely, trying my very best to convey my sincerity. I am hopeful that this new pediatric rheumatologist will be able to help us figure out the root cause of the disaster that is my body.
Four hours into my resting mission, I was at my wits end, which I suppose is what a lack of human interaction will do to a girl. I walked to buy a banana, hoping that seeing other people would help me out. My ribs screamed at me the entire time. I pretended like I couldn't hear them.
|CVS, if you are reading this and would like to send|
me more ice packs, please please please do I will
be forever grateful.
At some point a girl has got to live a little (and I really mean a little). I pulled the ice pack I put on my chest out of the freezer (I have two of the same one, so they are in constant rotation), strapped it on, grabbed my backpack, and headed outside, to a picnic table area near my dorm. Thankfully, it is somewhat secluded so people are not staring at me, but the truth is that my ribs are hurting badly enough that I am seriously considering bringing these ice packs with me to class, because my focus would probably be much better if I was not feeling like I was having a heart attack while trying to learn about literature and practicing Spanish with my classmates.
I have been writing papers and pouring into readings with this ice pack strapped around me, grateful to be somewhere other than my room, grateful to watch the light at the intersection change from green to yellow to red, grateful to be able to watch people pass by, grateful for the crickets and for the sound of people locking their cars and for the perfect temperature. Sometimes I stop and think about all of the appointments I have coming up. I think about surgeons who will be sticking instruments into my face and needles into my jaw. I imagine tubes being stuck down my very sore throat. Sometimes I stop and let my face sink into my hands, overwhelmed by the pain in my chest and back. I know laying down would be less painful, but there is something healing about ordinary sounds that remind a person that the world is still turning and twisting, and I certainly need that today.
The current medication cocktail that I am on is resulting in some confusion and disorientation and anxiety. I have been assured that this is normal, but I cannot help but feel a bit out of control. It is not severe by any means, but it is frustrating and tiring. It is difficult to stay calm when your medications and your pain are working in tandem against you. I know it is not really me feeling so shaky and panicky, but it can be hard to stay grounded.
The sky is dark now. It is absolutely beautiful. The dark and beauty have always coexisted, and I believe they always will.
Saturday, September 30, 2017
I have been having trouble making a speech in one of my classes, part of a required assignment. My speech is about juvenile arthritis. Ironically, because of complications stemming out of this disease and out of acute illnesses I have been facing, my ability to speak right now is very on-and-off, and when I can speak my voice sounds terrible and I have no ability to project.
"How long has your voice been like that?" one of my classmates asked me somewhat mockingly as we participated in a small group activity together. I had not previously spoken to this classmate and still do not know his name. I had just returned from the rheumatologist to attend this class, and given my extremely high pain level at the time, I had little patience for prying questions from rude boys.
"It's been on-and-off for about three weeks," I responded honestly, doing my very best to get the words out. Several sets of eyes were staring at me, awaiting my response. I had missed both days of this class the week prior, so people knew something was up. My voice is weak, and sounds strange, but I am still participating as much as I can. My classmate leaned back in his chair, smiling in the least friendly way you can imagine. What came next absolutely shocked me. He looked me directly in the eyes.
"I would kill myself if I were you."
There are so many responses that I have mustered up in hindsight, but in the moment all I did was stare. I did not respond at all, and had no idea what to say. I could not believe he said that to me, and even more than that, I could not believe that one human being would say that to another. Perhaps we should all be required to take an introductory class about compassion rather than English. I stared blankly at him, without even trying to form words, wondering if he realized how insensitive he had just been. I was absolutely appalled. I could not tell if I was angry, upset, or apathetic. He offered no apology. He turned to his computer and pulled up the webpage for our assignment.
I pondered this interaction for the rest of the class. I texted a friend to tell her what had happened, mostly just because I could not believe it and needed to type it out. I have experienced a lot of rude comments and insensitive remarks from classmates - I was diagnosed in middle school, after all. But no one has ever said this to me before, and frankly I did not think anyone ever would. I dedicate way more space on my blog to positive experiences with friends and even with strangers than I do to negative experiences, and I want to be clear that my experiences overall are disproportionately positive. In general, people are very kind and understanding, much more so than I think an outsider might expect. Still, there was something about this comment that rendered me unable to focus for the rest of the class period. I could not tell if it was his words or my medications making me nauseous. I could not think of why he might say something like that.
The class that this happened in is very small, and my professor knew that I was in a lot of pain, because I had explained to her that I was unable to give my speech and frankly it has not been super difficult to read my pain levels lately, because I just feel absolutely miserable and can barely go two minutes without visibly wincing from intensified pain somewhere in my body. She asked our small group a question and all of the members of the group looked at me to answer (since they had not paid any attention whatsoever to our assignment), and my professor, realizing what was happening, said, "I need someone to answer who didn't write up on the board" to strategically work me out of the running for this response. She was quick-thinking and respectful, two of my favorite qualities. I looked at her and mouthed "thank you" without even consciously thinking about it. She offered a slight, knowing smile and awaited answers from the boys in my group.
After class, I went up to her to apologize for being unable to deliver my speech for the fourth class in a row. I offered to bring her my health documentation. Refusing medical proof, she asked, "How about you just keep breathing?"
I am unsure whether or not she heard what the guy in my group so insensitively told me, but it was a shattering contrast, possibly the only affirming way to leave the classroom. I will admit that over the past few days I have been thinking much more of the guy's comment than of my professor's. I wish that I had the ability to focus only on what is uplifting, but his comment caused my heart to sink, not just for myself but for all people living with chronic pain and chronic illnesses.
All my classmate knows is that my voice was on-and-off for three weeks. He has no idea about the juvenile arthritis, the severe muscle pain, the costochondritis, the fevers, the lung inflammation, the upcoming jaw procedure, the upcoming sinus surgery, the semester I spent with strep throat, or the semester I spent with a combination of severe asthma, allergies, and sinusitis. He has no idea that I went to the doctor four out of the past five days and that I am now just as well-known at the UNC campus health center as I was at Tulane's. He has no idea that I am supposed to be wearing a protective mask everywhere and that I am still at risk for more infections. He has no idea that yesterday morning I left all of my dignity in the voicemail box of the only doctor in North Carolina and any of its bordering states that specializes in exactly what I need. He has no idea that I have been prescribed 21 more days of antibiotics and 14 more days of oral prednisone, and that we have stopped checking bloodwork because we know it is going to be bad. If he knew about all of that, what would his response be? If three weeks of misery made my life unworthy of continuation in his eyes, what would he think about a year of acute illnesses, or about seven years of a chronic illness?
I went back to my dorm room after the class and laid between two cold compresses, one on my chest (I have been diagnosed with costochondritis this week and it is unbelievably painful), and one on my back and neck, where my muscles have been tight and inflamed for reasons that are not totally clear. I debated what to do next. I needed to be productive, to do readings and send emails and type out assignments. I needed to respond to text messages and send out cancellations for all of the activities my illness is causing me to miss. I needed to schedule times for my friends to hang out in my dorm with me, because I refuse to be a dorm room shut-in even if I need to be laying down with ice packs a lot of the time. My mind was stuck on the insensitive comment. I did not know what to do next.
How about you just keep breathing? I asked myself. And so I did.
Tuesday, September 26, 2017
I also feel like possibly the luckiest person in the world, because I barely have to reach out. This morning I woke up to several sweet messages wishing me well as I continue fighting a mystery illness and encouraging me even though my body has reached its breaking point with exhaustion.
This morning, one of my classmates in my favorite English course asked me how I was doing. I swerved around in my chair to look her in the eye. The muscles in my neck were too stiff and painful this morning to flip my head around. "Okay," I said, and before I could ask her the same question she responded.
She asked it with so much authenticity that it would have been a cardinal sin to lie. "Just okay," I said with a tight smile, and when she inquired further I vaguely admitted that "medical problems" were the underlying issue (this was definitely not the time to be like, "I'm on Day 18 of antibiotics!"). Without missing a beat, she offered all her help and entered her number into my phone. It was 7:55 in the morning, and class had not even started yet, and already I had experienced so much compassion from several different people. Arthritis sucks, and it will always suck. But not many people get to experience so much kindness within 55 minutes of waking up, and not many people get to feel so loved and so supported, and so even though my body is crumbling I feel as though there is nothing to complain about.
|Just including this picture because my sister Hannah is the best, and|
because it helps to remember all of the happy, comparatively healthy times.
My favorite phlebotomist declared that he is now a part of my "fan club," along with my mom who was there with me, and I could not help but think of all the people who are cheering me on, and I went back for labs with a tired soul but a warm heart. I certainly do not deserve any sort of fan club. Every day I am absolutely floored by the kindness of the people around me. I have no idea how I ended up surrounded by so many wonderful friends. It is a privilege to experience so much grace.
Reaching out to people is an important skill to have, and one that I am learning. But right now, I am feeling very grateful to have friends who do not require me to reach out, but instead swarm in with brave intentions and ears to listen and shoulders to cry on. Friends who randomly call and ask, "How has today been?" or "How angry are we at your joints right now?" Friends who bring soup and give long hugs. Friends who include me in their shenanigans and invite me places, reminding me that at the end of the day I am still a college student.
I am better at reaching out now than I was a few years ago, and I have reached out a couple of times recently. But reaching out is exhausting, and my body has no energy. I am so overwhelmed with gratitude for all of you who have done the reaching out for me over the past few days. Thank you for reminding me that there are lovely things and lovely people in this world.
Wednesday, September 20, 2017
|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.
Monday, September 11, 2017
My world is not ending, but it is spinning a little chaotically right now. I made it to September 6th before catching my first college infection, and quite frankly I was hoping to make it much further. I went home for the weekend to rest and heal, clearcutting my entire schedule, destroying my social life in the name of recovery. It was an agonizing decision, as small as one weekend may seem. The first few weekends of the semester are so important in terms of establishing friendships and getting to know people. I decided that going home was necessary given my level of pain, but I still felt horrible sending all of the cancellation messages to people who had already carved out time in their busy schedules.
It's a drizzly Monday afternoon now, and my stomach is recovering from a night of nausea (thanks to the antibiotic I am on) while my joints are struggling to function given the chilly weather and the havoc the rest of my body is going through. I woke up feeling very weak, like if someone nudged me lightly or handed me a textbook I might collapse. Breathing is requiring an incredible amount of energy and effort. My immune system has zero fight left in it. Showering this morning brought tears to my eyes, although I am not sure what percentage of my distress is attributable to pain and weakness directly and what percentage is reflective of my frustration. I am working on a plan to reduce my exposure to germs that goes beyond the obvious measures like hand washing and avoiding sick people, but the logistics of this plan are unappealing and overwhelming.
My dad kindly drove me home after my last class earlier today, so that I can rest and then return to campus for my classes tomorrow. It is such a relief to have home so close by, but I am definitely feeling the isolation that comes with being seriously ill in college.
Whenever I am feeling particularly physically weak, I always have a powerful urge to go to the mountains or the beach. I imagine myself stretched out on a mossy rock, overlooking the Amalfi Coast, my hair curly and tangled from the salty mist. I long to draw crisp Appalachian air into tired lungs, curled up on a bench with a blanket, layered under sweatshirts two sizes too big. Sometimes I long for people, sometimes I long for solitude, and sometimes I long to watch people from a distance. I never long for success in these moments, I only long for peace. I long for spaces where I can breathe and soak in beauty. I long for places without any knowledge of the medical field, where words like "immunosuppression" are foreign and funny. I long to feel connected with the world I am trying so desperately to function within.
Saturday, September 2, 2017
Of course, the intense rain also reminds me of New Orleans. There is nothing that I would love to do more right now than wade through foot-deep puddles on my way to the French Quarter Market, befriending a moderately intoxicated bachelorette party on the streetcar along the way. I missed my Tulane friends with heightened intensity; it was like the clouds were dumping alcohol into my open wound. When I silenced my mind and concentrated solely on the rain, I felt like I was back in New Orleans.
|Polk Place - photo from www.unc.edu|
As I was making my way towards the back, I saw my sweet friend Annabelle. In our short conversation, she imparted that she knew the weather was hard on my joints and asked how I was feeling. I had not confessed the pain to a single soul. I felt like it was completely invisible, a boring topic that none of my friends would want to discuss. It was by no means some of the worst pain I have experienced, but it was uncomfortable and distracting. "Let me know if you need help with anything," Annabelle offered with utmost sincerity, and I knew she meant it.
My first two-ish weeks at UNC have been wonderful. I have had the opportunity to reconnect with so many friends and my classes are phenomenal. I definitely picture the next three years here as happy ones. I have found organizations and people that I love. But none of this cures arthritis, and so I am learning to cope in a new setting, with new friends and professors and places.
Thankfully, I went to bed last night not feeling too ill. A hot shower helped to reheat my joints and loosen them up. I drifted off to sleep feeling warm and cozy. More importantly, thanks to Annabelle, I drifted off to sleep feeling supported, validated, and loved.
I wonder if I will ever feel raindrops splash against my skin without thinking of New Orleans. I wonder if I will ever step into a bus without fear. I wonder if the people around me have any inkling of the pain associated with my illness. I wonder how much to tell them. Mostly, I wonder how I am lucky enough to know people like Annabelle.
Monday, August 21, 2017
To write down how I am feeling about everything would be extensive, complex, and impossible. It is always changing. It never changes. I do not know how to put it into words. I suppose I am not that skilled of a writer.
|Hoping for a year with less lung problems|
(for starters), but I will definitely miss the
hilarious medical cards from my parents.
Over the past few days, I have been particularly grateful for all of the familiar faces I see on campus, from high school friends to childhood friends to Governor's School friends. I have been stopped by so many people who have said, "Hey! I have been following your blog this year. Welcome to UNC - let's get together soon. Here's my number." I cannot express enough what a comfort this has been (and I will be taking all of you up on your offers!) Not only are all of these familiar faces helping to make the transition less lonely, but they are reminding me of how wonderful the people around me truly are.
I always hate it when people tell me, "Everything will be alright," or "You are going to be okay." It seems so easy to say, so cheap. But this week, these phrases have been exactly what my soul has been longing to hear. Thank you all for telling me that things will get better, and that happier days are ahead. Thank you for cheering me on, and for reminding me that I am stronger than JA. Thank you for including me in your everyday UNC activities, and for taking the time to check in on me. Thank you for your invitations to lunch or to coffee or to walks around campus, and for introducing me to your friends. Thank you for your willingness to listen, and for explaining all of the "Carolingo" to me (word cred to Tyler Eaton & Faith Jones). Thank you for your hugs and for starting conversations. Thank you for accompanying me to events and for teaching me all of the campus shortcuts. Thank you for addressing what I know is not the simplest of subjects with so much grace and understanding. Thank you for promising me that I am not alone. Most importantly, thank you for being here.
I am giving my goal of a positive, relatively healthy college experience another chance. I am thankful for all of the support along the way, especially from my UNC friends during this transitional time. Take two.
Sunday, August 13, 2017
I wish everyone had the opportunity to be surrounded by hundreds of people who share their same challenges and struggles #StrongerThanJA— Rachel Sauls (@Rachel_Sauls) August 11, 2017
A post shared by Rachel Sauls (@rachelksauls) on
I have always felt embarrassed talking to my healthy friends at home about my arthritis, even the ones I am the closest to. But when we went around in a circle introducting ourselves and revealing our diagnoses in the Young Adult group at the conference, I did not hesitate before sharing the fifteen-syllable illness that has so drastically altered the course my life. There were several other young adults in the group who were also diagnosed with polyarticular JRA around the age of 11 or 12, and I could very easily relate to their experiences. Last night, I was considered why that oh-so-familiar sense of embarrassment never even popped into my mind. The easy answer is that there were other people around me who "got it." The more honest answer, however, came to me as I walked through the breezy Indianapolis downtown area to pick up dinner, smiling at all of my instant friends who were also wearing their JA Warriors shirts: I am not ashamed of my illness. I am afraid of how I will be treated because of it.
|Most of the Young Adults group this morning|
What does often worry me is how people will react to knowing about my diagnosis, or to knowing the details of my illness. Will they push me away? Will they cut me out? Will they think that I am being melodramatic? Will they feel uncomfortable? Will they accuse me of lying? Will they insist that young people cannot have arthritis? Will they gossip about my illness to their friends? Will they assume that I cannot do things that normal teenagers can? Will they talk down to me?
All of these reactions are possible. There is no denying that. But I have decided that I would rather use the energy I spend trying to hide my illness from people to spread awareness and educate others on how people with chronic illnesses and disabilities should be treated. It seems clear post-conference that the only option is to use pain to create a more accepting, knowledgable, and compassionate world. It is possible to push for both acceptance of people with chronic illnesses and the development of a cure at the same time, and I intend on doing so.
|Paula (a fellow JA warrior), Dr. Chira (a pediatric|
rheumatologist) & I told our stories to and answered
questions from parents of kids with JA regarding
medical transitions and growing up.
Coming to the JA Conference, I knew that I would be surrounded by people who understood. But what I did not expect was how similar our concerns and experiences would be. All of these feelings that I ignorantly thought were my own are shared by the hundreds of other JA warriors I spent time with this weekend. We all fear that our friends and family think we are being dramatic about our diseases or exaggerating our pain. We all fear sounding whiny when what we really want is to be understood. We all went through a teenage phase of not taking our medications. We all hate methotrexate with a burning passion, even if it works for us. None of us are quite sure if we talk about our illnesses too much or not enough. Most importantly, none of us want to face juvenile arthritis on our own. We are not the same, of course; we all have our individual experiences and struggles, and we disagree on matters related to our illnesses. But we all "get it," even if we experienced or responded to various challenges much differently.
Walking away from the #JAConference confident that I am #StrongerThanJA. To echo our @arthritisfoundation CEO Ann Palmer, I did not choose this disease, but I do get to choose my response to it. I am choosing honesty, community, friendship, & compassion. As always, I hope you will join me. #juvenilearthritis #arthritisfoundation #kidsgetarthritistoo #JAwarriors #chronicillness #YAchampions
A post shared by Rachel Sauls (@rachelksauls) on
On top of the other young adults with juvenile arthritis, I also met several of the conference leaders and Arthritis Foundation staff members who were helping to organize and plan it. There are too many of them to name in a blog post, but I would like to especially thank Arthritis Foundation CEO Ann Palmer, for her presence at the conference, for the attention she offers juvenile arthritis, and for the encouraging conversations I was able to have with her. She inspires me to be both kind and powerful, bold and gentle. Every day, millions of women go to work to save the world, and she is one of them.
1. To choose honesty, community, friendship, and compassion in the face of my illness.
2. To gather a larger team and raise more money for the 2017 Arthritis Foundation Jingle Bell Run than I have for any previous event.
3. To build stronger relationships with individuals and families in my home community of North Carolina dealing with juvenile arthritis.
|Left to right: Katharine, Emma, Erin & me with pandas generously given|
to us by Alpha Omicron Pi!
Wednesday, August 9, 2017
As many of you already know, April was a hard month for me. I officially decided to transfer from Tulane University to UNC Chapel Hill, the result of severe medical challenges I experienced during my year in New Orleans. I then had to deal with revealing that decision to, well, everyone. At the same time, I was trying to finish up my first year of college, prepare for exams, love my friends as well as possible, and attend countless medical appointments.
Despite all of the rough waters April threw me into, I also received wonderful news that I have not yet publicly shared on my blog: I was offered a scholarship from the Arthritis Foundation to attend the National Juvenile Arthritis Conference in Indianapolis!
I have attended the conference twice before, once in St. Louis, Missouri and once in Anaheim, California, but it has been several years since I last went and this will be my first time being in the Young Adult group. Tomorrow, I will be traveling to Indiana to meet hundreds of people with similar health challenges and experiences. I am so, SO excited to be in the company of people who "get it," especially after having such a difficult year, and I am looking forward to all of the friendships that I know will stem out of the conference.
Almost all of my friends at home are healthy and able-bodied, so hanging out with other people who live with chronic pain and know the rheumatology lingo seems like such a comfort at the moment, especially since the last year has forced me to make difficult decisions surrounding my health and, frankly, my life. I cannot express enough how lucky I feel to have the opportunity to make friends who can say, "I understand completely," and mean it.
Tomorrow I get to hang out with HUNDREDS OF PEOPLE affected by JUVENILE ARTHRITIS and if that's not hype idk what is @ArthritisFdn— Rachel Sauls (@Rachel_Sauls) August 9, 2017
I am very grateful to the Arthritis Foundation for covering my flights, hotel, and registration fee, and for their willingness to organize programs like these that bring people together and make living with arthritis as a kid a little bit easier. I am genuinely looking forward to connecting with everyone else who will be there. If you are attending the Indianapolis conference, make sure to send me a message so we can meet up sometime. I would love to hang out with you and hear your story!
Here is to a weekend of friendship, health, motivation, advocacy, honesty, and understanding. Thank you all for your support!