Saturday, March 26, 2016

2016 Walk to Cure Arthritis

     I am thrilled and honored to announce that I am the Young Adult Honoree for the 2016 Triangle Walk to Cure Arthritis, sponsored by the Arthritis Foundation! A copy of my little arthritis-bio can be found below or by clicking here.

Photo credit: Alana Fiordalisi (thank you!)

 
            
 MEET OUR YOUNG 
ADULT HONOREE: 
RACHEL SAULS 

Rachel will be 17-years-old this May, but was only 11-years-old when she first began experiencing symptoms of juvenile rheumatoid arthritis (JRA). She knew something was wrong when her elbow was constantly aching, and after bouncing through a variety of specialists and dealing with the physical and emotional consequences of misdiagnoses, she found herself with a variety of Arthritis Foundation pamphlets explaining juvenile arthritis, a term that was admittedly foreign to her at the time. Rachel’s rheumatologist explained that her joints were like rivers instead of canyons; ultrasounds on her elbows, knees, and ankles confirmed the presence of fluid and swelling that was causing her pain.

Rachel is still in the process of trying a variety of treatments for her arthritis, from NSAIDs to DMARDs to biologics. During the early years of her disease, she went to physical therapy often because the swelling in her joints resulted in muscle stiffness,greatly limiting her mobility and range of motion. She is currently managing symptoms with a DMARD and a biologic, but is not in remission. She still has bad days in which activities like writing and walking are extremely difficult.

One of Rachel’s biggest challenges as a young person living with arthritis is explaining to friends and teachers that she has a disease that is typically misunderstood as exclusive to older people. The invisibility of her illness and perceived mildness of it has often left her searching for validity and upset at the lack of understanding. She has trouble asking for help without feeling like a burden, and frequently struggles to verbalize exactly how she is feeling during flares.

Rachel wants people to know that, If you are currently living with a form of arthritis or another autoimmune illness, reaching out for help, whether it is physical or emotional, is not only a good idea, it is essential to living in a sustainable way and preserving energy.

Even though these challenges exist, Rachel is constantly motivated and inspired by people she meets through the Arthritis Foundation and through the chronic illness community. She has learned to be an empathetic advocate, willing to stick up for herself and serve as a resource to other patients. As part of her advocacy and journey toward being more open about her arthritis, she started a blog that can be found at www.rachelplusrheum.com. She is learning that sharing both the beauty and pain of living with JRA is helpful to herself and to others. Most important, she is extremely grateful for people affected by arthritis who have shown her compassion and support as she attempts to navigate this ongoing challenge. 
    As the Young Adult Honoree, I am the captain of a team called "Rachel's Rock Stars" that will be fundraising and attending the walk on April 30th. If you would like to make a donation or join my team, please click here for the appropriate page. My goal is to raise $1,000 to help people like myself dealing with this disease. Finally, I would absolutely love for all of you who live nearby to come out for the walk itself on April 30th. It is guaranteed to be lots of fun and it is a wonderful way to spend a Saturday morning! Additionally, the event is kid- and pet-friendly, plus if you bring your baby or your puppy I will love you forever. Thank you all for your support!

Sunday, March 13, 2016

(Casually) The Best Week of My Life

     I did not start off this week thinking that it would rank among some of the greatest weeks in my life, but it quickly tumbled into something incredible. I started by visiting an out-of-state college, which was exciting and joyful and made this whole moving-away-in-less-than-six-months thing feel very real. I had a lovely time with my parents and sister, and I am looking forward to sharing an official college decision with you all in April.

     When I returned to school on Tuesday, my calculus quiz went better than I anticipated, and I was greeted by a swarm of enthusiastic friends who genuinely want the best for me. In a world full of unnecessary competition, where college is made out to be a high-stakes game manufacturing winners and losers, I love how excited and selfless my friends are as we celebrate each other's accomplishments. Honestly, I am having way more fun watching my friends being accepted into a variety of phenomenal universities than I am being accepted myself. We've already danced around over decisions and mourned a bit over others, so there really is not any reason to be nervous or apprehensive about all that is coming up in the next month. I was thrilled to be accepted into another college high on my preference list in the middle of the week.

    Hillary Clinton announced that she was going to be speaking at a local high school in my district, and so of course I sent my RSVP within five minutes of the announcement. I parked and stood in line with my sister at noon, waiting for the doors to open, and it was 5:30 before Hillary Clinton actually took the stage. Aside from about twenty minutes of sitting down on the pavement, carelessly eating some dark chocolate and reading a book, I was standing the entire time. I did not wear my knee braces, because I did not want to be the odd one out and also my knees kind of feel like little burritos when they are all swaddled with gray orthopedic fabric "tortillas," and I did not want to spend six hours standing up with burrito knees.

     Seeing and hearing Hillary Clinton speak was absolutely amazing. Once we were in the high school gym and before she even arrived in the city, I found myself bonding with an amazing group of women who, like myself, were hype for the prospect of a woman president. Clinton was scheduled to speak at 3:50, and by 3:00 I was already in tears thinking about how excited I was. When she came out at 5:30, my friend and I sobbed in an embarrassing but also encouraging manner. "Don't worry, I cried the first time too," some of the women older than me assured us.

      There is something about seeing a woman on a presidential stage that excites me beyond belief. Maybe it's that I have seriously considered careers in which women are routinely discriminated against. I have dreamed of obtaining a divinity degree for a while now, and every time I bring up that aspiration I am risking being told that because of a single chromosome God thinks I am incapable of leading a congregation. Complementarian viewpoints make me want to puke because they are incredibly offensive and hypocritical, yet they are so popular in a world where white, Christian men seem to think they are the chosen ones. I literally feel nauseous when people begin their patronizing speeches of sexist remarks laced in faulty scriptural interpretations. When I see Clinton standing on a stage, campaigning for a title that many claim (either explicitly or otherwise) is better suited for men, I am extremely proud of her and of all the women that have worked to make this possible. I absolutely love being a woman, and though I will never be okay with the constant discrimination or the harassment that accompanies my gender, I would not trade the inherent and immediate bond I have with other women for anything in the world.


     Needless to say, the campaign rally was a wonderful experience, which was perfected when my friend Amelia and I (see: "Why My Chronic Illness Demands Feminism") actually got to meet Hillary Clinton following her speech. Clinton even took a selfie of the three of us using my phone, so obviously I can never switch phone cases or clean it.

     I'm done campaigning now, I promise.

     All in all, it has just been a wonderful week. So why am I writing this? What does it have to do with arthritis?

      The truth is, I was in a lot of pain for the majority of the week. On Tuesday my hands were so painful that I had to ice them in the middle of class (such a hassle, don't even get me started), and somehow the burning sensation of the ice on my skin hurt less than the swelling taking place in those tiny little joints. On Thursday night, I was sure I was going to have to use my wheelchair on Friday, although I ended up being okay to walk. My knees have felt a lot mushier than usual much of the time, and the reality that Orencia probably is not a drug that is going to launch me into remission is beginning to creep up. Class transitions stress me out immensely, because I want desperately to be able to keep up with my friends and chat as we go, but at the same time I try to avoid walking with them because I do not want to slow them down.

     The best weeks of my life might involve considerable arthritis pain. The time I spent wondering if I would collapse at the rally seemed minuscule in comparison to the excitement I felt meeting Clinton, at least in hindsight. I can curl up in my bed with swollen knees, or ask a friend for help writing down my answers, or feel like I'm abusing microwave privileges by constantly asking to heat up my joint wraps, and still have a wonderful time. I need not wait until I feel better to experience joy, and I need not dismiss my best days as those behind me, before my disease became active and began to severely impact my life.

     Sometimes I wonder if I am unintentionally romanticizing this whole having-a-chronic-illness thing just to try to make myself (or others) feel better. Is a moment where my knees are trembling as I wait for a beloved speaker really lovely, or am I just pretending that it is because I am scared of the truth? Am I being helpful to those of you living with chronic illnesses/chronic pain? Is my budding acceptance of the way I am living physically becoming too flowery and sentimental? Am I just trying to dress up rheumatoid arthritis to make it seem less intimidating? Will all of this complexity swallow me one day?

      I'm unsure. I like to think of myself as pragmatic and realistic, and much of the time these self-applied labels seem appropriate to me, but at my core I am a hopeless idealist, expecting the very best of everything and everyone. I expect the very best of my immune system, and I expect it to protect me instead of attack me, but I also expect the best of myself, and sometimes that involves having the greatest moments of my life even as I am swamped with seemingly unbearable pain. I do not know how to be perfectly pragmatic, and I do not know how to be perfectly idealistic. I only know how to be me. And until I figure out a way to be consistent and sensical, that is just going to have to be enough.

Wednesday, March 2, 2016

Disaster Days

     Sometimes, even during time periods where my flares are not particularly bad, I have disaster days, in which all glimmers of health seem to have escaped me completely and my body is a wreck. Today has been a disaster day.

      There was a lot of buildup to this day. I was sick earlier this week, with a sore throat, but I felt significantly better yesterday and was able to speak and accomplish all of my activities in a fairly normal fashion. I was annoyed because my allergy shots produced large, red lumps on each of my arms, but other than that my health was at least in "B-" condition, which is stellar considering my general state of health.

     Today has been a different story. I woke up very nauseous, which I attributed to the fact that I had more cough drops than dinner last night, but I was determined to go to school. I had an independent study meeting at 7:00 a.m., my first period class was not an easy one to miss, and I was already awake, so going in late did not seem like a viable option. Last night my knees were full of fluid and squishy, but I figured the issue would resolve itself by the morning. To my immense disappointment, it didn't, and I woke up with even more joints hurting. My knees, ankles, hips, elbows, wrists, fingers, and back were all throbbing; standing in the shower felt like a feat that only Olympic athletes could accomplish. Even the act of stepping into my knee braces almost reduced me to tears. Despite the disaster that I was, I slumped into my car feeling determined, and I used all of the energy I could muster to roll down the windows and play a Madonna album, even though it was 40 degrees Fahrenheit outside and 6:45 in the morning. I drove like a grandmother, which I guess is a good thing but also made me feel pretty pathetic, considering that the reason for my slow driving was arthritis, a disease commonly (though often inaccurately) associated with populations much older than myself.

     Usually I feel somewhat better as the day goes on. But today has been a different story. During the middle of first period, I was still dealing with morning stiffness (which typically only lasts about 45 minutes to an hour for me), I left the room twice because I was afraid of throwing up, and my sore throat made my speech weak. I tried to discreetly eat some almonds to combat the nausea, because I find nuts to be a very helpful tool in doing so, and they prevented me from throwing up but did not make me feel any better. Each time I stood up to walk to the bathroom or to get a tissue, I experienced a split second of panic in which I worried that my knees or hips would give in on me and I would tumble to the ground. My imagination was packed with images of embarrassment and mortification that would presumably follow this tragic hypothetical situation. Granted, it did not feel hypothetical in the moment; it felt like a very real possibility that I was obliged to prepare for. I was glad that I went to my first period class and I wanted to be there, but I was miserable. A few times when I had questions about the worksheet we were completing, I was literally too exhausted to ask my classmates. That, my friends, is fatigue at its finest. My second period class today was chorus, which was no better, since I could neither stand nor sing. I spent most of the class in a purgatory-like state between sleep and alertness.

     At one point during my third period independent study class, I got up to go to the restroom, which was an accomplishment in its own right. The journey from the library to the restroom is not far at my school, but it certainly felt like a daunting stretch to my hurting body. A few teachers stared at my bulky knee braces and heat wrap as I awkwardly trudged through the hallway, but I just pretended like I could not see them, because the last thing I wanted was some condescending conversation from an authoritative stranger. As I was washing my hands, I habitually glanced upward at the mirror on the wall, and I was shocked.

Not looking fantastic, but
looking remarkably better than I feel
(Side note: Emory shirt is not a clue as
to where I'm choosing to go next year.)
    I looked alright. My hair was a bit on the tangled side but had dried nicely, and my makeup was not a mess. My complexion looked fairly typical, and I was not nearly as pale as I felt. How could I feel so terrible, yet look so normal? My body felt like it was literally breaking apart, but in the mirror I was completely intact! The only clues to my suffering were my large knee braces and slow gait, and neither of those indicators could be seen from the mirror. As weird as it sounds, I was very impressed with myself in that moment. But I also know that this convenient phenomenon is problematic to many of my friends, and even to strangers. How are they supposed to know when I feel mediocre and when I feel like the world is ending? There are very few clues for them to decipher. When my pain has reached a breaking point, my body looks exactly the same. I've learned not to contort my face, and I know that placing a hand on my forehead can be effective in preventing my nose from scrunching up when one joint experiences a particularly intense arthritic pang. I know it is not easy to be friends with someone dealing with a chronic illness, particularly an invisible one, and as I stared at my surprising reflection I felt sorry for my friends. I realized how difficult it would be from the other side, and while for selfish reasons I never want my pain to be visible, I suspect that from their perspectives visual labels would make everything a lot clearer.

     I should stay home from school more than I do. I could have gone home today, even just for a little while during chorus and my independent study, but instead I told myself that I would stick it out. "Take Thursday and Friday off. Rest and feel better," a teacher gently but assertively instructed me this morning. I was a bit embarrassed, because I ignored his Monday suggestion to take Tuesday off, and there I was, even sicker because of it. I laughed it off lightly, but I knew that he was not joking. My body is not nearly as resilient as the bodies of my peers, and my standard recovery process is slow enough to drive me to insanity. As I was leaving school today, he reminded me that I should not come to school tomorrow. "This is not a talk, this is an order," he said, confident and likely a little fed up with my intention to miss as few days as possible. Realistically, he is probably right. Although I am ashamed of my stubbornness, I am still going to go to school tomorrow. I may learn the lesson he is trying so desperately to teach me at one point, but that point is not today.

     There are some good things to be said for disaster days, although I am confident that they do not justify or outweigh the associated pain. I feel reinvigorated to continue my advocacy efforts and to write. My perspective and outlook on the world matures. Suddenly, my homework does not seem nearly as burdensome or important. I enjoy academics, but my classes do not seem to hold they existential weight that they used to. On disaster days, getting an "A" on a homework assignment seems petty and irrelevant. All I want is to feel better. Isn't that all anyone wants? No. Because on most days, it is not all that I want. I want to feel better, but I also want a gazillion other things, most of which are laughably idealistic and impractical. On disaster days, my focus is on reducing my pain level and loving people, and that is all that I can seem to put forth effort for.

     So that's where I am, and it is not necessarily the most productive state to exist within. I just want to be okay. I want all of the fluid to disappear, and I want to be resuscitated from my foggy half-awareness. I want to run a 5k tonight, and I want to bolt up the stairs when I forget something rather than carefully plan out when my next trek up will be to maximize my efficiency. But even if I am never able to do these things again, and even if every day from here on out is a disaster day, I sure am living a beautiful life.