Friday, December 23, 2016

Clinging to Mary

      I suppose the holidays are supposed to be cheery and delightful (for the record I am feeling very joyful myself these days), but as with most things, I think there is a much more complex side to all of this that we rarely take the time to figure out.

       Last night was rough for me. My knees and hips were hurting more than usual, and I have a cold, which is not the end of the world but is causing me a certain amount of anxiety since I am scheduled for surgery on Tuesday. At one o'clock in the morning, I managed to hit my head on my sink faucet (don't ask) and it sent me straight to tears of embarrassment and exhaustion and frustration. If you add the entire cup of coffee that my typically caffeine-free body drank last night to this equation, you understand why I was having significant trouble sleeping and feeling especially anxious about my health.

      Symptoms affect me at all hours of the day, but the nights always seem to be the most miserable. There is something about the darkness that makes pain feel like it might never end. Realistically, I know that this seemingly negative outlook might be true. The most honest thing might be pain for all of this life. There may never be a day where I wake up and feel just like my friends do. There may never be a day in which I have all of the energy and strength of a healthy person.

One of my favorite theological images:
Mary consoling Eve.
     Religious faith has always been (and will likely always be) a complex topic for me. For some peculiar, unknown reason, I have had absolutely zero doubts about God or what the long-term future holds over the last two or three months. Questions that used to push me toward theology books or long, detailed trains of thought during boring classes no longer perplex me, despite the plethora of mysteries I still find in my religion. I have no idea why this is, but I have found myself very fixated on the moment in which I will meet God. I am so excited for that and so joyfully amazed at the thought of coming face-to-face with someone so good and wonderful. For the time being, I am much more interested in dreaming about what God will be like than I am in contemplating God's existence. I am constantly imagining what "heaven," or a renewed world might be like. I feel like I am always getting these beautiful glimpses of it, and the thought of seeing it in its fullness is so overwhelmingly gorgeous to me. Every good thing that happens seems like a small taste of the ultimate greatness that is to come. Every challenge seems so temporary when I think of all that lies ahead of me and of all of us.

      When I was recently describing my pet-friendly Episcopal church in New Orleans to a friend, I excitedly revealed, "I get to go to mass and sit behind a chihuahua. That is my heaven!" Even though it sounded (and was) ridiculous, I like to think that there is a place for that sort of thing in the full presence of God. I like to think that all of the chords in each hymn sound perfect and even the smallest creatures are welcomed in. I like to think that I get to sing "O Come All Ye Faithful" while harmonizing with the entire world and dancing with my cat. And I like to think that there are no swollen knees or unreliable ankles or achy hips. And I like to think that everyone's fingers can turn the pages of the Book of Common Prayer without any stiffness.

     Normally during the Christmas season I find myself so fixated on the human embodiment of God that the other parts of the Nativity sort of become a blurred story in my mind. But this year, I have found myself concentrating a lot on Mary. Perhaps it is because the recent political climate has rooted me further in my identity as a girl and as a woman. I think a lot about what Mary must have felt and how terrified she must have been. I think a lot about how God placed so much power in such a young girl. Although I am certainly no Mary, keeping her in my mind during miserable nights of congestion and joint pain and fear seems to make things a little easier. She is already in that wonderful place that I am allowed the privilege of glimpsing into, and sometimes I find myself jealous of all that she knows now. Growing up Baptist, no one in my religious community ever placed a lot of emphasis on Mary, but lately I have been participating in a lot of more traditional services and communities that focus on her regularly. So at night, when everything hurts and I am afraid of surgeries being cancelled and I am longing for something purer and better, I find myself clinging to Mary, who I am sure had her fair share of sleepless nights and pain and tears. I wonder what she is like and pray that I will be able to meet her one day.

       Happy holidays, dear friends. I wish you more good days than bad ones and more health than pain. And if you find yourself alone and hurting on a dark winter night, it just might be worth thinking of Mary.

Monday, December 5, 2016

Flying with RA - Eight Tips & Tricks

      Now that I am attending college 800+ miles away from home, plane rides have become a frequent experience of mine. Traveling is always fun, but traveling with rheumatoid arthritis can be a bit tricky at times. I hope the tips below are helpful and relevant to you, especially with the holiday season of travel chaos coming up! Let me know if you have any additional tips or other suggestions.

1. Make a checklist of your medications, and be thorough about ensuring that they are all in your carry-on bag before you head to the airport. I am always forgetting at least one thing. It's always worth checking, even if you're confident. I learned this the hard way; you don't have to.
Cute, disposable face masks that
can help you stay healthy on flights!

2. Wear a mask in the airport and on the plane, depending on your level of immunosuppression. I recently discussed with providers at the Student Health Center and my new rheumatologist how important this precaution is for people who get sick easily, and how germ-y airports are.

3. If you can help it, refrain from bringing heavy carry-on items. I am completely guilty of this and could stand to take my own advice here, but heavy carry-ons are just a bad idea all around. Checked luggage will save your knees, shoulders, elbows, back, and wrists from the difficulties of dragging around an enormous backpack or deceptively heavy little suitcase. Plus, all the work you might think you're going to do on the plane is not actually going to happen (at least in my experience...) so you might as well toss it into a larger, checked bag and call it a day.
A blue injection case with
elastic bands to hold 3 shots.

4. Obtain a little travel case for your injections! The travel case pictured on the right has an icepack inside that should be frozen before you leave for the airport, and my mom always puts the prescription label on the outside (the pictured case is flipped around to protect my personal information), just in case I am questioned about it by TSA. Inside, the case has little elastic bands that will hold as many shots as you need to carry.

5. Sleep well before you fly, and do not count on sleeping on the plane. There is a high chance that if you try to squeeze in a nap while several miles up in the air you will end up with some uncomfortable joints for days to come.

6. Use a wheelchair in the airport if you need to. I have had to do this before, and it is not as awful as it might sound. Airports can be enormous, and you do not want to be exhausted from walking through the terminals before you even reach your destination. If you are traveling alone, the airport can usually provide for someone to help you get from the entrance of the airport to the gate, and then from the gate to the plane. It might feel embarrassing to not be able to do it all yourself, but it is better than damaging your joints.

7. Pre-board if you need to. At the beginning of the boarding process, the gate agent will announce pre-boarding for anyone who has a disability or needs extra time to get from the gate onto the airplane. Do not be afraid to use this; you may receive undue pushback if your disease is invisible, but do what is best for you.

8. If you are on a long flight, make sure to stand up and stretch! Aisle seats might be preferable for this reason. Standing up and walking, even if it is just to the restroom and back, will help prevent your joints from stiffening up.

      Flying is completely possible for people with rheumatoid arthritis, and while traveling with painful joints may seem daunting, above are eight concrete steps that you can take to improve your experience. Keep spreading your wings!

Monday, November 21, 2016

Sunshine

St. Louis Cathedral in NOLA
(The oldest cathedral in the country!)
  Good news, friends - I am doing much better!

      My health seems to have stabilized for the most part. I am no longer getting weekly infections and my joint pain is fairly well controlled at the moment. I have been walking and biking all over Uptown and the French Quarter, and I am enjoying the chance to exercise and explore the city. I am spending lots of quality time with friends and feeling loved, happy, and healthy. I am still probably having a tonsillectomy in December, but I have over a month of good times, winter holidays, and normal college stuff to look forward to until then.

An ironic picture of me enjoying
a rainy day in New Orleans
      I am so, so, SO ready for Thanksgiving. This year, I'm thankful for (wow, could I sound more cliché?) my health. I am thankful that I know I will be able to enjoy the break, flare-free, and that I am surrounded by a competent Student Health Center, rheumatologist, and hospital system here in New Orleans. I am thankful that my scary thoughts about whether or not college this far away is right for me have completely disappeared in light of my health improvements. I am thankful for college friends who have surrounded me with understanding, and who are now celebrating alongside me since I've been boppin' around without too much pain. I am thankful that I have not had to make my way over to Student Health many times in the past couple of weeks. I am thankful that I have found a church in New Orleans that I adore. I am thankful for courses that are challenging and intriguing, and a body that is ready to rise up to the occasion. It is a happy, healthy time, and I am having a blast at college and enjoying the start of this four-year opportunity to study the things I am truly passionate about. I am thankful that I am exactly where I am supposed to be.

      I know there will be more dark days. I am not naïve, nor unprepared. When they come, I know they will hurt. But the eventual return of a storm is not a reason to ignore clear skies. It might be getting a little colder and darker outside, but I am brightening up and my world has become quite a bit sunnier. I'm thankful for sunshine.

Wednesday, October 26, 2016

I Will Follow You Into the Dark

       I think the best way to start this blog post is just to be upfront and frank with all of you: my health is extremely sucky right now and I am fighting as hard as I can, but I kind of 100% feel like death.
 
       The past month (slightly longer) has been one of my worst as far as my health, and I am just barely scraping by. I want to sugarcoat this and tell you that I am keeping my spirits up and still fully participating in life, but I genuinely believe that lying about this would be doing a disservice to all of my friends who are affected by illness as well. I am sick. I am suffering. I am struggling. If these things are true for you, too, know that you are not alone. What is the purpose of this blog if I am not honest? What is the point of writing if not to convey an authentic human experience? Why fill a website with half-truths?

     I think it is probably best not to get too into the medical side of things here, especially since we (my family, medical team and I) do not quite have a full understanding of what is going on yet, but basically in the past few weeks I have had repeated cases of strep throat and viral infections, resulting in two courses of oral antibiotics, an antibiotic shot, a course of oral steroids, and a steroid shot. I feel like a corpse. My lungs hurt, my chest hurts, my stomach hurts, my joints hurt, my throat hurts... you get the picture. Last week I went to the Student Health Center every single day and I have been every day so far this week as well. I see the medical director more frequently than some of the people I live with. I have received all of the care they can give me, but am now in need of a specialist and I have a lot of very real, long-term decisions to make regarding my health. Luckily, one of the nurses at the Student Health Center is always looking out for me and I now have an appointment on Friday with an ENT who should be able to point us in the right direction.

Bourbon Street at 6, bedtime at 8.
The lives of Laura and Rachel.
      Things have been pretty dark. I have zero energy and need a minimum of ten hours of sleep plus naps to even consider functioning, so basically all I have been doing is schoolwork, Walgreen's pharmacy runs, sleep, and doctor's appointments. As I am sure you can imagine, this can really dampen a person's social life. Luckily I have been able to carve out time for fun and socialization here and there - last Friday night, Laura and I went out to dinner on Bourbon Street (the true NOLA college experience, my friends) and tonight I am meeting up with my Big for dinner. I have been able to drag myself to some lovely church services and a few other events. My classes have been full of laughter and joking around and smiling faces that remind me that the world is still okay.

      Being acutely sick for over a month has been a lonely experience. It has left me with a lot of tears (I stopped wearing makeup for three weeks for a reason) and a lot of sadness. I look at all of my peers and am confused by their energy and health. I feel different, like a bright red cardinal in a flock of crows, unable to fly far enough or fast enough.

      I am grateful to say that I have also received support during this difficult time. My parents have been the most attentive people in the world, even from thirteen hours away, and they have eased much of the burden of trying to figure all of this out. I also live with actual real-life saints in my dorm suite, and without them I have no idea how I would be pushing through all of this. A few nights ago I was feeling absolutely broken as I was desperately scouring the Internet for a specialist who might see me and sobbing to my mother over the phone. My suitemate Allison kindly shared some peanut butter and pretzel sticks with me while my roommate Laura used her Google skills to identify potential specialists in the New Orleans area. Laura even offered to drive me straight to urgent care, despite having many other responsibilities (and better things to do) that night. She always makes sure that I never have to do anything scary by myself and she has been so kind throughout all of this craziness.

       Before I knew it, our whole suite was in my room (we ordered a pizza, cookie cake, and garlic knots, but let's not talk about that...) laughing and talking and doing homework and complaining about our lives. We did not solve anything that night; I am still sick and I am still searching. But regardless of how physically productive it was or was not, I was immeasurably touched by their willingness to hang out with me even when my nose was runny and my voice was scratchy and I looked like a complete and utter disaster. I was in a ton of pain, but I also knew that I was surrounded by people who loved me and would do anything for me. What more could anyone ask for?

     I am working very hard to protect myself from all of the disgusting stuff that floats through the college environment. I wear face masks on public transportation, wash my hands thoroughly and often, and avoid other sick people. As a public health major, I am reminded of how commonplace these infections are every Monday, Wednesday, and Friday at 11 a.m. when I spend the entire class period being disgusted by PowerPoint slides filled with pictures and descriptions of helminths, germs, and diseases. Despite all of the measures I am taking and all of the academic knowledge I am gaining to accompany them, I am still getting sick. It is easy to fall into the trap of blaming myself whenever a new symptom pops up - did I share a cup? Did I touch a serving utensil in the dining hall and then touch my face? Did I ride the street car without my mask? Did I shake too many hands at church on Sunday? "This is not your fault," my friend Isabel told me emphatically as I was using up her Finding Nemo tissues and relaying all of these fears to her. She said it with so much confidence that I think it must be true. I cannot live in a bubble, and reasonable measures are just going to have to be good enough.

Isabel & I hanging out and
casually color-coordinating.
    After receiving yet another positive strep test yesterday afternoon, I called a friend from home, feeling like I might actually explode from my sadness and frustration. I had been sent away from the clinic with only the positive result and told to return in a few hours, and it felt like the last Jenga block of my composure had been tugged out from under me. I was collapsing in a very messy and inconvenient manner. "I'm exhausted," I confessed between disgusting sniffles, too tired to try to maintain any dignity or put up any walls. "I've been fighting this for so long and I just want to quit." Even I was taken aback by my own honesty in that moment, because as many of you know I am not exactly known for opening up to people. But I think what I said is the truest expression of how I feel. I am so, so tired of fighting my own body and going to the doctor and trying to make myself feel better. I am sick of trying to protect my immune system and listing off the medications I am currently taking to nurses and gagging on large pills. I am exhausted from throwing up in the middle of the night and treating ondansetron like a precious gem and not being able to eat pineapple and trying to figure out copays. There is no break and there is no way out, and if I think about it for too long it feels like a nightmare swarming over me and suffocating me.

     My immune system is ineffective, my joints are bad, and I am very ill. This is the dark. I am living and breathing and existing in the dark. I do not know how long it will last, and I must admit that part of me wonders if it will last forever. What if I never get better? It sounds absurd, but keep in mind that I have experience with this sort of thing. An achy elbow during lacrosse practice in the sixth grade turned into a lifelong condition that I am fighting every single day.

    Last night was particularly rough. The antibiotic I am on now is supposedly stronger than the last, and I sure feel that in my stomach. It also leaves an absolutely horrid taste in my mouth, but luckily Laura is always stocked up on Capri Suns and is super understanding about these things. I woke up around one o'clock in the morning unable to breathe and nauseous, desperately trying to suck medication from my rescue inhaler into my lungs without throwing up. I tried unsuccessfully to eat dinner last night, and the antibiotic wreaked havoc on my fragile stomach. This morning I woke up hungry and managed to carve out time to eat a real breakfast at Loyola's dining hall before class. I thought maybe I was well enough to reintroduce some fruits to my diet (I have been unable to hold them down over the past few days), but I was not looking to abuse this privilege so I apprehensively placed exactly three pear slices on my plate and stared at them for a few minutes, intimidated.  I was only able to eat two. "You are doing your absolute best," Faith assured me yesterday, "You should be really proud of yourself." This morning my best was two pear slices, and I am trying my hardest to be proud of that. Two is greater than zero.

     I want to make sure you all know that every bit of encouragement you have offered me over the past few weeks has been so, so, SO appreciated. All of your cards, notes, text messages, phone calls, and Snapchats have provided me with very real strength and snapped me out of the isolation that accompanies illness. They all come at exactly the right moment. Thank you for telling me about your lives and ensuring that I am still included in the normal teenage and college stuff that goes on. Thank you for sending funny videos and cheerful words. Saying, "You can do it!" or "You got this!" might not seem like a big deal to you, but right now these words of encouragement are my lifeline.

     I am sorry that it is so scary. I am sorry for being so frightened. I am sorry that it is so dark. Thank you for following me here.

Tuesday, October 25, 2016

Learning Grace

Written in July 2016. 

     Lately I have found myself thinking a lot about the lyrics to a hymn appropriately titled, "Servant Song." My dear friend Helen and I sang this song in church a few years ago as a duet, and it is a fond memory that I will always hold close to my heart. The verses that mean the most to me are below:

"I will hold the Christ-light for you,
In the nighttime of your fear.
I will hold my hand out to you;
Speak the peace you long to hear.

I will weep when you are weeping;
When you laugh, I'll laugh with you.
I will share your joy and sorrow
Till we've seen this journey through."

     I have spent many hours, broken up into random fragments of time in the car or while grocery shopping or completing some other menial task, pondering the meaning of these words and how to live them out. I also think about how lucky I am to have people who weep and laugh with me. Friends, church members, teachers, and family have all stepped in at various times to make sure that I never felt completely alone. We all know the stark difference between a friend who watches you cry and a friend who cries with you, and I am grateful to say that I have had many of the latter.

      Singing this hymn as a duet with Helen was absolutely perfect in a million different ways. Several years ago I attended a youth group a summer camp even though I was very anxious about my health, and when I went I ended up flaring terribly. One day I barely moved from my bed and one of the chaperones next door with a medical background was sent in to check on me. Every time I tried to walk I was overcome with tears, both of pain and frustration. It was a horrible experience physically, but never have I ever learned so much about grace in such a short period of time. In the central room of the camp, there was a box where campers could leave short little notes about other campers if they wished. One night Helen left in the box the note below:


     As you can see from the picture, the note is still on my bulletin board at home today. Even though the board is cluttered with college information, souvenirs, postcards, artwork, and lanyards, I have never removed that note. It is only six words long, and the notecard is tiny, yet it means more than me than almost anything else in this world. That note was exactly what I needed in that moment. Helen spoke the peace I longed to hear, and uplifted me when I was feeling useless. It is strange thinking back on it now, but the summer camp situation was bad. My eyes were swollen from crying and I could not participate and I felt so incomprehensibly far from being an inspiration. I thought that everyone wanted me to go home, and I wanted to go home, and I could feel the heavy weight of disappointment bearing down on me and suffocating me. Even though the rest of that week was still miserable, thanks to that sweet note I felt a little more redeemable and lovable, and that meant the world to me. Helen is one of the most genuine people I know, so receiving such a heartfelt note from her made my world a whole lot better that day. It does not take putting someone's entire life on your shoulders to walk alongside them in a Christ-like manner; sometimes, it only takes a note. 

     I think we sometimes treat grace like it is an innate quality that some people possess and others do not. But I believe that this is an incomplete way of viewing such a large yet delicate concept. Grace is learned and practiced. We can actively decide to show someone love and to accept love from others every day. We can practice doing these things even when it is hard, even when it feels unnatural, and even when it is frustrating. We are all just learning grace, and the more we dedicate ourselves to this task the more fulfilling our lives become. 

     Thank you all for weeping and laughing with me. Thank you for all of your notes and kind words and encouragement. Thank you for supporting me and cheering me on. Thank you for your random text messages and phone calls, even when you felt awkward bringing it up. My joints may feel like crap, but my heart feels so full. 

Thursday, October 6, 2016

Jesus & Orencia

      I am often asked how I reconcile my identity as a Christian with my reality of being sick. People see that I am suffering and (correctly) infer that God seems to provide little physical relief for my pain. I am bombarded, not usually by people I know but rather by social media and simple exposure, with articles detailing the complex relationship between God and illness, and I usually have no idea how to feel about it.

      I suppose I do not cling to any particular theology of suffering. I am not interested in trying to explain it or figure it out, and I hate the idea of trying to write or analyze it to death. I think at some points during my illness, particularly during my middle school years, I felt the need to know all of the answers, but I do not feel that way anymore. I remember once accusing God of being a malevolent doctor who cruelly withholds cures from desperate, suffering people, but that idea or hypothesis is currently just too antithetical to my broader understanding of God for me to entertain. It is a puzzle piece that does not fit, and I refuse to spend my whole life trying to make it click. Maybe I've matured, or maybe I'm just exhausted. I do not suppose that it actually matters that much.

     My outlook is just that God cries with me when I am sick and in pain. My illness makes God just as upset as it makes me. God hates arthritis just as much as I do. I think empathy is one of the most beautiful things in this world, and I like to think that that is the quality exhibited by God in these situations. Is that right? I have no idea. But I know that as for me and God, we cry together. And when we do, we use those special Kleenex that are cold to the touch to wipe away our tears, because those are our favorite.

     I have been trying to explore some different churches now that I am in New Orleans to find a good fit, and on one humid Sunday morning a few weeks ago I found myself in an eclectic Episcopal church downtown, surrounded by an overwhelming number of fascinating people. It was exactly the service my little heart was craving after being away from my home church for almost a month. The air conditioner was broken, but it did not matter in the slightest, because we all joined together in singing, clapping, and listening, grateful that the church has survived so many disasters. We pulled out tattered hymnals to sing "There is A Balm in Gilead." And as I sang those sweet words, surrounded by people I did not know but already loved, I found myself thinking, I'm not exactly sure what a balm in Gilead is, but I think maybe there's one for me, too. The service concluded with an upbeat rendition of "I'll Fly Away," and as we bounced around belting out the lyrics it gave me hope that there is something better waiting just ahead. I'm not entirely sure what it is, but I am sure that it is there. Maybe some days I only believe in God because I need to believe that there is something better out there. But you know what? I think that is a pretty legitimate reason. As much as I have tried to poke and prod my faith, I cannot escape a mysterious yet confident understanding that this world is not all that we have. I wholeheartedly believe that one day I will be welcomed into the arms of God, surrounded by a love even sweeter and fuller than what I have known here on earth, equipped with joints capable of every activity.

      I am sorry that I do not have any better theology. I am sorry that I am just trying to smush Jesus and Orencia together and calling that a belief system. I am sorry that I do not believe that there is earthly healing for everyone. That is a terrible pill to have to swallow, and it is okay to take pity on yourself or eat a pint of ice cream in response. The one thing I can promise is that there is a balm in Gilead for you. Maybe you will see it tomorrow, maybe you will see it in a few months, or maybe you will see it in seventy years. Until then, Jesus and Orencia might just have to suffice.

Sunday, October 2, 2016

Here We Go Again

     So it turns out that arthritis does not subside purely because I am in college and having fun.

     My asthma has continued to worsen in severity since my arrival, so I made an appointment with a nurse practitioner at our campus student health center to have a spirometry test done. "We don't have spirometry testing here," she explained to me, "but we can do a peak flow." She briefly left the exam room to grab the plastic device and find a nurse who could pull my allergy chart records to see my personal best. As soon as she gently closed the wooden door, I burst into tears. My lungs were hurting, my joints were hurting, and honestly I just wanted to be able to go home. Unfortunately, I was unable to pull it together by the time she returned.

    "What - what happened?" she asked, concerned. With her was a nurse from the allergy clinic, who happens to be my favorite (we had a lengthy conversation about eyeliner and makeup application techniques at my most recent allergy shot appointment). The nurse kindly handed me a box of low-quality tissues and rested her hand on my shoulder.

    "I'm so sorry," I said, forcing myself to laugh. The last thing I wanted was for them to think I was being overdramatic or that I was just homesick, because expressing any sort of emotion in the medical field is effectively asking for your symptoms to be disregarded. "It's just that my asthma and my arthritis are flaring at the same time right now, and it's just really hard." It was not a great answer by any means, but it did the job. I completed my peak flow test through tears. I performed almost as well as my personal best.

     "This looks pretty good," the nurse practitioner explained to me, "but clearly you're having trouble breathing. So I'm increasing your Flovent, and I also want you to be taking Zyrtec every day, just in case the new environment is causing any allergy issues." She handed me my prescription and I did not say much, because once I start crying it is so difficult to stop. "I really hope you feel better. Make a follow up appointment in two weeks so we can check and see how things are going. And come in sooner if you can't breathe. You have to be able to breathe."

    If you have read this blog even in the slightest you know that I have many criticisms of medical professionals. But that nurse practitioner? She was wonderful. She listened to me, she took definitive steps of action, she showed me compassion, and, perhaps most importantly, she believed me (Tulane students, if you're trying to see someone at the student health center, hit me up and I'll send you her name). She respected me and my privacy, even when I was a mess. Even though I left the appointment extremely upset by the sudden and negative changes happening to my body, I was relieved to find someone on-campus who is so competent and kind.

    After I left the building I returned to my dorm room, where I laid on my rug for a while (don't judge, my bed is up off of the ground and my joints just don't have it in them sometimes). This is a recipe for wallowing in one's misery, so I decided that instead I would take a walk in the enormous park located directly in front of our campus. It was an absolutely lovely day outside, and so I scooped myself up and ventured outside.
One of many oak tunnels in Audobon Park
     The loop in the park is 1.7 miles, and I am confident that it is the prettiest 1.7 miles in the entire southern United States. The large oak trees loom over the path, providing shade and mystery, and the fountains really bring it to life. A variety of people whirl by, from rollerskaters to Great Danes to kids on scooters. A ninety year old man runs while a professional athlete walks his dog and a young dad pushes a double stroller. On either side of the paved pathway are people picnicking, playing instruments, and relaxing in hammocks. It is an absolutely wonderful place to be, and I enjoy every second I spend there.

    Foolishly, I walked the loop four times, which comes out to 6.8 miles. My right knee and left hip felt like they were decaying, but I was determined that this was my way of physically overcoming the burden of arthritis. I needed to prove to myself that I was not on the verge of losing all function. At the end of my walk, I was proud of myself and exhausted all at once.

    What I always forget is that the worst of the pain is not immediate. I woke up on Saturday morning feeling atrocious, but I successfully participated in a field trip (climbing the levee was not my friend) and walked to lunch with my roommate. We had a wonderful time, and it was not really until I returned to my dorm room that the pain settled in and I realized I was in for a very long evening. It is a horrible, throbbing pain that shatters my world and is accompanied by a squishy, tender knee. As I am writing this, I am tearing up because I am misspelling so many words and I cannot seem to remember how to spell them correctly. I am a very good speller, so this is abnormal for me, and feeling my body take a toll on my brain is extremely upsetting and discouraging. I have been using NSAIDS, a heating pad, and the power of sleep, but none seem to be sufficient in curbing the pain.

     Today I am feeling even worse, because on top of my joints hurting my throat is extremely sore and my ears keep popping and pinching. I suppose it's back to the student health center for me tomorrow...

Tuesday, September 6, 2016

Rheum and Roomies: Starting College

My lovely roommate Laura and I on 
the Mississippi for a riverboat cruise.
       I'm starting my second week at Tulane University, and needless to say I am absolutely in love with it. How could I not be? New Orleans is the best ever, and I really enjoyed spending the weekend in the city, living it up at Southern Decadence. Of course, it's a big transitional time, but I would say that it has been very smooth so far. My roommate and suitemates are wonderful, I'm not feeling homesick, and I just really love life here.

     I was unsure for a long time whether going far away for college was the right thing to do. All of my close friends were headed to our local state school; they can see their families (including pets!) whenever they want. But while my mom was helping me pack a few days before we flew down to Louisiana, she said, "I'm really proud of you. Going far away is hard, especially when all of your friends are staying, and I think it's really brave." In the midst of all of my anxious uncertainty, her simple, earnest words meant the world to me. I picked what was for me the more difficult option and it has completely paid off. I'm doing something new and exciting, and I have four years to explore what I would argue is the best city in the world and what is inarguably the craziest, most unique city in the United States. I no longer feel unsure. I feel bold, confused by the street car system, unexpectedly cold, and lost whenever I end up on Canal Street, but I don't feel unsure.

     Of course, a new school comes with new accommodations to be requested and new people to get to know. These conversations have been popping up all over the place. I explained my syringe situation to my roommate so that my weekly Orencia injections wouldn't lead her to think I was shooting heroin, and today I met with the disability center to line up everything for my classes. I have already made some connections with other people living with autoimmune illnesses (what can I say, we sick people seem to have a knack for finding one another) and I've made tons of healthy friends, too. The pharmacy has most of my prescriptions, the allergist sent my serum, and I have a New Orleans rheumatologist in place. This week I am setting up meetings with all of my professors to ensure that they will not freak out when I need to type notes or wear a bulky gray knee brace. Because let's be real, it wouldn't be the first time.

      I also met with a physician at the student health center, just to go over some of my chronic conditions, review my allergy shot schedule, and have a baseline in case anything gets out of control. They will primarily be handling my asthma, which has been pretty tricky since my arrival. I will probably end up back there sometime this week or the next to have a spirometry and nebulizer test-thing done so that we can play with the dosage of my preventive medication and possibly tack on a few new strategies, but I feel very grateful that my asthma is the problem rather than my arthritis.

     When I went in for my initial appointment, a very personable and kind nurse sat with me in the exam room until the doctor arrived. "Are you on any medications?" she asked, with no background information on my health. I said that I was and explained my Orencia injections to her as she typed it into the computer. She seemed very impressed with my ability to give myself my own injections, and I felt a small beam of pride for being able to do so. After she inputted the correct dosage, she stood to hand me a clipboard of forms and leave.

     "Woah," I said, a little surprised, "I was just getting started." We laughed as I continued to ramble off medications until we finally got through my mental list. She typed it all in without a glimmer of pity on her face, which was much appreciated. "Okay, now we're done," I promised her. We talked for a few minutes about my arthritis and how that played into the rest of my health. Which brings me to my point, which is that nurses are basically the best people ever. Appreciate them. High-five them. Laugh with them.

     I'm hoping and expecting that overall, college will be conducive to my health. I think spending less time in class will allow me to have more control over my fatigue, and I am enjoying the freedom I have over how I use my time. I'm trying to be conscious of carving out time to rest and not over-committing myself. I'm saving up spoons (spoon theory) for fun activities like ballroom dancing, shopping trips, and New Orleans outings. I have no idea how much rheumatoid arthritis will affect me throughout the next four years, but I do know that I'm going to have a ton of fun.

Friday, August 12, 2016

The Cat & the Girl

     I'm just going to come right out and admit it - even though I was climbing mountains two weeks ago, the past two or three days have been awful. On the plane ride back from Hawaii my knees were swollen and extremely painful, and I felt nauseous and exhausted. Vomiting on plane rides happens disturbingly often to me, and yet it does not feel like motion sickness so much as the untimely emergence of a chronic flu-like feeling.

     Yesterday was some better. I felt terrible in the morning, but I was eager to see my friend Faith and optimistic about my pain levels, so we went on a couple of short adventures to a craft store and to Chipotle before resting at home for a bit. Thankfully, Faith helped me with my wheelchair in the craft store, so I could contemplate the size of canvases and the bright colors of acrylic paints instead of the size and shade of my joints. I am always so hesitant and embarrassed to use the wheelchair; the night before I texted Faith and asked if my using it would freak her out, a reflection of my paranoia rather than my rock-solid trust in her. But all in all using the wheelchair was a good experience. I wasn't hurting so badly and no one stared at me. The cashier even directed her questions at both Faith and I. Typically if I am using the wheelchair the questions are only asked toward my more physically capable companions.

    After using the wheelchair in the morning my knees were feeling significantly better by the afternoon (in this case, significantly better was still extremely painful, but you have to take what you can get when you can get it). I could tell that much of the fluid was gone, and while my wrists and finger joints were in an excruciating amount of pain I felt much more like myself being able to maneuver around on my own. Of course, it doesn't help that this flare is coinciding with the Summer Olympics. As I watch athletes joyfully compete and push their bodies to the ultimate limit, I wonder why the limit for my own body seems to be crawling under a blanket and carefully finding a food that my stomach can hold down.

    Unfortunately, it seems that for my pitiful joints all (relatively) good things must come to an end. Last night was met with more nausea and more knee pain. My attempts to sleep were fruitless; I was jet-lagged and unable to find a comfortable position for my puffy knees. Fatigue slammed into me mercilessly, like a towering, repetitive wave, but I was not even close to falling asleep. So I found myself trying to make a college packing list, reading articles about the Olympics, and, quite frankly, feeling sorry for myself and wondering how I will ever be capable of accomplishing all that I am striving for in the midst of so much relentless suffering.

     This is when my smallest pet, a petite black cat named Brooke with a quiet and sweet disposition, stepped up to the job. She softly meowed before silently jumping up onto my bed and beginning the process of nestling into the crevices of my joints, her favorite place on any human. I welcomed her presence, feeling alone, and gently pet her head after she laid near my hip.

     It was only when she decided to reposition that an issue arose. She declared the most comfortable spot on my body to be the small space between my awkwardly bent knees, and began making herself a home. Of course, this caused excruciating pain on my end, the kind that made my head spin a bit and tears burst out of my eyes, and I instinctively and immediately tossed her off of me and onto the end of the mattress where my small frame does not stretch. Brooke understandably lost all of her trust in me and scattered off the bed, running to climb through the cat door and escape my cruelty (disclaimer: I didn't physically hurt her, but it certainly seemed like I broke our bond).

    This brief episode completely freaked me out. Part of the backstory to this is that while we were in Hawaii, our dog brushed right up against death and had to have emergency surgery. She is still in recovery, but I have never felt so relieved as I did when we arrived home and she greeted us with her usual skate around the hardwood floor and excited mouth-breathing. Needless to say, I am currently feeling very grateful for the pets in my life and for the unconditional love they demonstrate every day.

    I felt absolutely horrible about lashing out against Brooke. I sobbed, regarding myself as no greater than a parasite, receiving love and returning it as pain and regret. How could I dismiss such a tiny, precious creature who has literally made no mistake in her entire life? How could I let this disease turn me into a monster?

    The truth is, I'm not a monster. I'm just a 17-year-old girl experiencing a ridiculously abnormal amount of pain, trying desperately to protect myself from the damage inflicted by walking and chewing and cats.

    I considered myself unforgivable for sending Brooke away when all she wanted was a warm place of affection to retreat to late at night. And isn't it so much more than that? Doesn't it seem like this is what I am always prone to doing when the pain becomes severe? People draw close to me in an attempt to hold my head above the raging waters, to ensure that I am able to gasp for air, but their hold hurts and so I abruptly swim away, allowing myself to drown and scarring friendships in the process. It seems as though those who love me the most, even down to a beloved little cat, suffer the greatest consequences of my pain as well. It doesn't seem fair.

     I turned to my side and stared at my window, illuminated from the street light and transformed into a pale yellow by my blinds, as hot tears slid down my face, dripping endlessly from my eye to my nose to the worn purple sheets of my bed. I heard the smallest, daintiest scratch and my door, followed by the most delicate meow you can imagine. I raised a swollen arm and leaned uncomfortably toward the door, the increased motion exacerbating my pain and causing even more tears, and slammed my flat, immobile hand down on the handle just enough to crack it open. The stream of artificial yellow light from the hallway pierced my head upon its greeting, but as my eyes made their way to the bottom of the door I saw two gorgeous green eyes meeting mine, asking for permission to return.

Brooke snuggling near my painful wrist a few
years ago, being ever so gentle and sweet.
    Upon seeing Brooke, I maneuvered my aching bones back into my bed and continued to cry. There I was, considering myself unforgivable, feeling as guilty as you might expect a mass-murderer to, wondering why this disease was making me such a bitter human being, and my sweet cat forgave me in less than five minutes. "I'm sorry," I pleaded, knowing full well that she couldn't understand, "I wasn't trying to be mean. I was hurting. I am hurting." Instead of reprimanding me for my insensitivity or responding with well-deserved scratches or a hiss, she cuddled right up in the gentle curve of my stomach, created by the arching of my back, and fell asleep. My apology had no meaning to her, because she never thought to attribute my harshness to a flaw of character. Instead, she recognized that I must be in pain and decided to love me more rather than to shun me, even though the pain caused me to shun her. My meanness scared her away and yet she still drew closer to me, devoid of fear and full of understanding.

    Even on the most unbearable of nights, I always find myself experiencing grace, forgiveness, and love.

Saturday, August 6, 2016

Climbing (Literal) Mountains

       Last Saturday I climbed a mountain.

At a Diamond Head lookout, reppin' the Green Wave.
        Even though I was flaring the day before we were scheduled to make the hike, I was determined to go. The last time we were in O'ahu, my sister and my mom climbed Diamond Head without me - I was simply too sick. While I had a nice time with my dad while they were hiking, I was determined to climb it the next time we found ourselves in Hawaii, and so that is exactly what I did.

      I was doing pretty well for the first little stretch, which mainly involves weaving through rocky, inclined pathways and remembering to slow down and enjoy the view every once in awhile. I was on the move and excited about it. I felt pain in my knees but trudged on, thinking that if I paused or took a break it would only worsen the pain. Our steady pace invigorated me, and it isn't a long climb (only .8 miles up), so I was prematurely feeling on top of the mountain world.

    Unfortunately, my joints were not similarly enthused about the trip. I made it up the first set of stairs but was in an immense amount of pain. I have been trying all day to think of a way to describe it. The pain is not sharp, but by no means is it dull. It is mentally overwhelming and makes me want to self-amputate my legs, but it is also eerily familiar.

This sea turtle wasn't part of the hike, but it was
pretty cute so I thought it deserved a spot here.
     After the staircase, when we were walking up a steep pathway in a dark tunnel, the pain became way too much, and I ended up having to take a break and lean over a railing. Stop reading here if you're prone to queasiness, but I threw up twice before being able to keep moving. Sometimes when the joint pain gets that bad, the stomach just has to follow. "I'm going to get to the top," I assured my ever-patient mother, who waited with me. There was no way I was climbing 75% of a mountain and sending myself into a flare complete with nausea without being able to say that I climbed the whole thing. No. Way. With fiery knees and an equally fiery heart, I trekked up to the top after a few more short breaks. My broken body made it all the way to the peak look-out.

     As I looked out over Honolulu, for the first time in a long time, I felt truly and unreservedly proud of myself.

     These moments of pride and self-worth have been much harder to come by since I was diagnosed with arthritis. Even opening a peanut butter jar feels like way more than I can handle sometimes, so I do not exactly applaud myself for making it up the stairs or walking to class by myself. I'm not advocating for this style of thinking or attitude towards self-value, but I often feel as though anything I do decently is cancelled out by all of the help I need. Of course I make good grades in calculus, I once thought after someone complimented a test grade of mine, otherwise what would I be here for? I needed help walking to first period and I'm a difficult student for my teachers. I'm not great at being a cheerleader for myself, and although this will not come as a surprise to most people who know me, it is never exactly something I have been open about, and it is also never something that I have felt any of my healthy friends have understood.

     In a way, constantly beating myself up is just another mountain I am trying to climb. This past week has included joint pain, middle-of-the-night sickness, and 3 a.m. phone calls with nurses. It has included shots and inhalers and Hawaiian-style pharmacies. All of these things have certainly felt like mountains. While I am proud of myself for sticking with the hike even when it got hard and for accomplishing my goal despite my knee and hip pain, realistically I know that the literal mountains are the least important ones. I would rather be a wonderful friend or caring student or empathic listener than reach a physical summit. Nevertheless, reaching the top of the actual, literal mountain was a monumental accomplishment for me and a timely reminder that I always have been and always will be stronger than juvenile arthritis.

    There are and will be many other mountains, but they don't make the one I conquered on Saturday any less significant. My name is Rachel, I have arthritis, and I climb mountains.

Sunday, July 24, 2016

Tomorrow

     One of the most difficult parts of flaring is the lack of understanding that surrounds JRA and being sick in general. Of course, these misunderstandings are not typically laced with malice; most people genuinely do not understand the toll living with chronic pain takes on one's body and one's mind, and while this innocent ignorance is enormously frustrating, it is also unavoidable. Figuring out the complexities of chronic illness takes up a whole lot of energy, and everyone ends up exhausted. I'm tired, my friends are tired, and I'm sure when my rheumatologist hears about this he will be tired as well. None of us know what to do with my knees or my elbows or my heartache, and we just keep trying different drugs and words but none of them seem to permeate the pain. Some people stay close by, some people distance themselves and put up walls. While I always advocate for the former, I fall into the latter category at an embarrassingly frequent rate, which only leads to further isolation. I wish I could distance myself from myself, but unfortunately that is not how all of this works. 

      A concept I have pondered relentlessly since my diagnosis is that of "tomorrow." It can be such an intimidating word, but it can also be brimming over with hope, like hot chocolate on a chilly day that refuses to be confined by the ceramic walls of a mug. Sometimes when I flare, all I can think about is the next day. Will it be better? Will it be worse? Will I be able to move around? Will I have to cancel my plans? Will my friends understand or be frustrated or both? Will my parents wish that they still had yesterday's kid? 

     When you're living with a chronic illness, "tomorrow" is one of the most intimidating words in the English language. It stalks its victims throughout the day, creating fear and worry. I would like to assure you that I have completely escaped from its chains and have come out the other side a hero, but that simply would not be true. I spend a significant portion of my time during flare days thinking about tomorrow until I am inevitably distracted by something way more interesting and productive. 

     Needless to say, I occasionally find myself desperate for some encouragement in the dark pit that might await me the next day. So I decided a few months ago that when "tomorrow" creeps up behind me, I will respond with a question stronger than any of the questions above. 

How can I love people more tomorrow than I did today?

   (Disclaimer: This form of the question works best at night. In the morning the question, "How can I love people more today than I did yesterday?" is a better fit. Two versions, same thing.) 

     I have extremely limited control over whether I will feel better tomorrow. The most I can do is sleep and strap some ice packs to my body. Even as I am writing this, I have no clue how I will feel when I wake up tomorrow. It is terrifying. Living like this is frightening and it seems like no one really gets it. But I know that no matter how big or how small the challenges of tomorrow turn out to be, there can still be love. 

     Even when I kind of felt like the world was falling apart earlier this week in the midst of all of the pain, a Southwest flight attendant and a Disney cast member assured me that there are still plenty of people committed to a lifestyle of conscious tomorrows. There are still people who actively seek to understand rather than to judge and who believe the experiences of sick people without needing a thousand doctor's notes or medical forms. These strangers loved me as I vomited in the back of a plane and requested a ride modification for an invisible condition. These strangers saw me only at my worst, yet instead of shunning me they drew me in and made me feel at home. These strangers are people I want to be like. These women are people who are committed to loving others more tomorrow than they did today. Sometimes during flares strangers feel like friends and friends feel like strangers. Maybe they are all one in the same. 

      Tomorrow seems awful at the moment, because I do not foresee a fast turnaround as far as the condition of my joints and I already know that my day will consist of doctors and shots and packing. But I also have plans to tell people that I love them, in words and in actions, even if it must be done from a distance. I'm sure there will be tears at the allergist's office and tears at home and tears while I'm watching Grey's Anatomy for the bazillionth time. Flares are hard. But flares are no excuse to waste time. Who knows how many tomorrows any of us have left to love each other? Who knows whose life will be changed by a pinch of generosity? Who knows how many tomorrows we will someday regret? Tomorrow is a new day. It can be full of the status quo, or it can be a hot chocolate mug of love and hope. How will you love people more tomorrow than you did today?

     Don't throw tomorrow away. 

Wednesday, July 20, 2016

Some Days Are Hard

 Written on Wednesday, July 20th. Published on Thursday, July 21st. 

    The truth is, I'm not exactly one to write during the hard moments. I willingly write about them afterward, when I feel like I have learned some sort of grand lesson or at least snapped myself out of whatever uncertainty I am in. But some days are hard. Some days have no clear moral to them. Instead, illness seems evil and random, with the cruel capacity to suck all of the life out of me and strip me of the identity I have spent 17 years creating. Honestly, today was one of those days.

     I woke up in more joint pain than I went to bed in, which is always discouraging. I started the day with an appointment with my oral surgeon, which was disappointing to say the least. When I revealed the jaw pain and issues I was having in conjunction with the flare in my lower joints, she immediately directed me to eat soft foods for two weeks and return for a follow-up. My heart sunk. Doesn't she know that the soft food diet was making me crazy? I thought incredulously. Isn't she aware of the inseverable link between my mental health and my ability to chew? I did not argue with her, since she is a brilliant surgeon and I am simply a complex and emotionally-drained patient, but I was quietly devastated. I spent all day joking about it and eating semi-soft foods, but I felt a sense of panic that only comes when you know firsthand how awful a soft-food diet truly is (especially for a vegan like me - think no pudding, scrambled eggs, mashed potatoes, etc.). It felt like such a dumb reason to be upset; there are people starving, and I am bitter about the type of food that I have to eat? But this brief emotional hurdle has been impossible to address given the present condition of my joints.

     Between my joint pain and soft food diet, I was not feeling particularly grateful for all that the day had to offer. Even texting felt like a monumental task to aching bones. What's worse is that the pain was causing me extreme fatigue, enough to make me fall asleep after completing unimpressive, menial tasks. I napped periodically throughout the day, because why not? I didn't eat breakfast or lunch, because what did it matter? Why not just stay under the three layers of blankets I inhabit every night? Why not just sleep through the pain and hunger and disappointment? What difference does it make if I am awake or asleep? Why should I put in effort to look nice or go exploring when my health is going to halt any and all of my attempts? Why should I do anything if it is just going to force me right back into bed?

      I slept a lot, but eventually I needed to move on with my life, and having a friend over seemed like a good start to that. Before she came, a person I am very close with commented, "I'm sure [your friend] is pretty sick of coming over when you're not feeling well." There was no malicious intent, but the words stung like lidocaine (medical jokes, I know). Of course she's sick of it, I thought, holding back tears. I'm sick of it. I want to stop hanging out with me. Why did I tell her it was okay to come over? What am I putting her through? I felt selfish and I responded by mentally torturing myself with painful questions designed as a ethical form of self-incrimination. Was I having her over to distract me from my own pain, or because I thought she would genuinely have a good time? Am I receiving significantly more than I am giving in my relationships? Isn't this massive inequality morally wrong? It seems that way. Having a friend over ended up being nice and gave me something to do besides sleeping face-down on my pillow or staring through wispy white curtains praying for any sort of avian entertainment, but when we stopped talking for a period of about 30 seconds I fell right asleep, exhausted by my attempts to calm my racing mind and soothe my uncooperative, flaring joints. And as embarrassing as it is to admit since I have spoken many times before as an adamant defendant of grace, friendship, and compassion, the truth is that even though I shouldn't, I still feel absolutely horrible about falling asleep. I want to be a good friend to people. I want to accurately convey how much I care about them. It seems like my body just can't keep up with me, and I want out of it. Who wants to come over if all their friend is going to do is sleep? Staying alert is the most basic of functions, the most simple way to show someone that you care. If I can't even stay awake, what kind of friend does that make me?

      All in all, it was not a terrible day. I saw two cats (we're really delving into the important stuff here), one of which snuggled with me on the sidewalk in the middle of a college campus for a solid five minutes before I noticed a group of students in a lecture hall staring at me through the large, modern window that spanned across the entire wall. At first I assumed they were staring at the bandages tightly wound around my knees and right ankle, playing a guessing game of what injury I had and judging its legitimacy, but then I realized that I was on the ground with a cat. Such is life. This evening, I happened upon a wonderful veteran and his service dog, both of whom were injured in Iraq, and was reminded of how difficult life can be but also how beautiful unconditional love is as I admired the bond between them and asked questions in hopes of soaking in some of the veteran's insight. Finally, I met up with a former teacher, sent a low dose of caffeine coursing through my veins in the form of tea, talked about my life outside of all of this, and felt more like myself again.

     Days like these are hard. Of course, I am not oblivious to all of the amazing things that happen in the world every day. I remain a cheerleader for empathy and grateful for friends who care. I laugh at jokes and crack some of my own in a last-ditch effort to convince myself that everything is funny instead of sad. I feel joy and I give hugs and I tell people that I love them. Yet I cannot help but feel crushed by the weight of not knowing how to be good at being sick. I have had a lot of practice - why do I still have so many questions? Why am I still screwing it up so much? Shouldn't there be some sort of manual for this? All I got when I was diagnosed was a brochure. Shouldn't someone explain to me how to make my friends understand the implications of a chronic illness? Will they ever understand? I spend hours wondering how I am ever supposed to repay all of the debt I accumulate with my friends when I am too exhausted to remain awake and alert for any sort of interaction.

     Perhaps the hardest part of it all is feeling different. Most people do not have to worry about how their friend is going to feel when they are hanging out together; my friends do. Most people do not have to worry that spending time with their friend will be more exhausting than it is rewarding; my friends do. Most people do not have to make plans around their friend's ability to walk; my friends do. Of course, it is thoughtful and considerate of my friends to take these gentle steps instead of just being like, "We're climbing Everest today, let's go." But honestly? Ninety-nine percent of the time, I don't feel like my company is worth it. I have no incredible talent, I often say the wrong thing, and I over-apologize whenever I make mistakes to the point where people become understandably fed up with me, which, of course, only makes me want to apologize more. Yet I always abide by my pretty legitimate conclusion that over-apologizing is generally better than under-apologizing.

     Somehow, I tell myself, with a growing sense of determination, I must cleanse myself of the guilt that comes with carrying around a sickness that my loved ones are emotionally subjected to and influenced by every time I flare. Even with a disease as noncontagious, invisible, and internal as arthritis, it is difficult not to feel unclean. No one seems to understand this phenomenon, yet we are surrounded by a world that often dismisses or disregards people with chronic pain and/or disabilities, and it is terrifying. How am I supposed to feel confident in my friendships when so many previous ones have succumbed to the deceptive forces of illness? How am I supposed to put on a brave face when I'm terrified of everything that has happened to me healthwise over the years? How am I supposed to cling onto the people I need the most for support when they need space to breathe, too? How am I supposed to know who to talk to about these moments of despair and when? How am I supposed to know if people actually like me or if they are just hanging out with the sick kid? I hate myself for asking these questions, but I cannot stop myself from pondering their complexities. If you ever have any answers or advice, do share.

    As you have probably figured out by now, I run an entire blog centered around living with rheumatoid arthritis. I volunteer with the Arthritis Foundation, network with other people living with autoimmune conditions, and advocate for patients. How can it be that I still have absolutely no idea what to do with my own life? I am unable to figure it all out. Some of my beliefs conflict, and some of them are underdeveloped. Living with arthritis is a jigsaw that I have been working tirelessly at for five years, yet the pieces are all jammed together, and there is no natural smoothness or skill involved. Nothing feels like it clicked right in where it was supposed to be. I am just mashing ideas where I think they might fit, hoping that along the way I will find empathy, love, and understanding but simultaneously being painfully aware that no one else can see the rest of the puzzle and that my disease will continue to be a cause of isolation.

    I do not feel hopeless by any means. I am so hopeful that I have to periodically inject myself with doses of reality. But I do not have any lovely anecdotes to share, or meaningful morals. Today was pretty rough. I looked rough, I felt rough, the world seemed kind of rough. I wish I could say that the way arthritis has changed me as a person has been worth all of the suffering, but the pain and panic have been so intense that if I could magically wave a wand and make my body healthy again I would do it in a heartbeat. I think that would make all of my friendships and conversations easier, too. Alas, this is not how the world operates. Some days are hard.

Saturday, July 16, 2016

Alternative Words

     I have been thinking a lot lately about what to say when people are sick and when. The world is such an achy place, and sometimes there is no clearcut right or wrong. My joints have been especially painful today, the result of excessive walking and rainy weather. I talked with a million different people at a reunion I attended, and while my health rarely came up in conversation, I began to think more about what it means to say "the right thing."

     In the past I've written lists of what to say and what not to say, and frankly I sort of regret that approach. I think it is all much more complicated than that, because people are complicated and people are the ones who say things. I also believe that there are very few things that are truly wrong in this context, there are just some things that are better than other. I am afraid that by unintentionally creating rigid rules I may have contributed to the isolation of people just trying to support their friends.

     But realistically, I know that many people find posts like these helpful, because they want to say the best things possible at the best time possible. They are a beautiful mix of perfectionists, concerned friends, and outsiders who just want to make things better for their friend. Being a chronically ill patient does not mean that I never feel at a loss for words, either. It is difficult to know what to say to someone when they are confronted by a daunting diagnosis or relentless symptoms. What do you say to someone who is vomiting so frequently that they have made a bed out of the bathroom floor? How do you respond when a friend's prognosis is grim? I do not have all the answers. My hope is that this post will be informative and constructive despite my limited experience.

What People Say: "How are you?" 
What Is Better: Anything more specific 
Why: Some days I don't even know how to start with an answer to the friendly "How are you?" My only indication of how deep you want me to go is how well I know you, and that can be a tricky line to define. Do you want to know about how upset falling in the shower made me, or do you want me to muster up a smile and assure you that my lungs will keep breathing for you to obligatorily ask me again next week? If you want your friend to say that they are fine so that the conversation can move on, then this is a perfectly appropriate question. And sometimes, a quick response is what you want, and that is okay. But if you actually want to know how a sick person is feeling, your questions are going to need to be a little more specific without being nosy (and that's all about intention, not words). For someone like me, with a joint condition, you could ask "Are your knees hurting?" or "Are the medications helping?" For someone who recently underwent surgery you could ask, "Is the incision site painful?" or "Are you feeling better or worse than when I last saw you?" Really you can just make these up, and you will learn much more than you would by asking the more common but more vague question.

What People Say: "I hope you get better soon." 
What Is Better: "This sucks. I'm calling you tomorrow to check in." 
Why: For chronically ill patients, it may get better or it may not. But we do not need the pressure of feeling obligated to get better. Honesty is best, particularly if you are close to the chronically ill person. The assurance that a friend will be there the next day (it's not always physically possible but we live in a connected world) is comforting because it crushes the assumption that people can only handle our unpredictable illnesses in small, infrequent doses. "I hope you get better soon" is a nice sentiment, but the alternative holds more weight.

What People Say: "Call me if you need anything." 
What Is Better: "I'm walking you to class tomorrow, text me tonight so we can coordinate outfits." 
Why: This is actually something a friend said to me once, and I felt so #blessed. The truth is that we will probably never call you, because literally everyone hates that. If you want to help when we are in pain, call us. Even better, just be a little assertive and make it fun somehow. Was coordinating outfits with my friend a blast? No. Did it make the walk to class better? Strangely, yes. I suppose it just made me feel like she was having a bit of fun in a not-so-fun situation, which relieved my guilt over not being able to withstanding a simple high school hallway trampling. Further, she seemed more concerned about the outfits than about walking me to class, which assured me that it was not a big deal to her and that she was committed to helping. Obviously you may not be in a situation in which the alternative I provided is ever remotely useful, but we all find ourselves in circumstances in which adding some peculiarity can create a funny memory rather than a disaster.

What People Say: "I'm tired, too." 
What Is Better: "I'm really sorry I can't relate to you on this."
Why: Honesty. I understand why people try their very best to find points of commonality, and in fact I think it is an admirable and empathic thing to do. Yay for being human! But it can also be painfully minimizing to someone who is dealing with a chronic illness. It won't horrify us if you admit that you are unable to relate to our situation - we already know.

What People Say: "You just need to get up and get moving." 
What Is Better: "Would you rather go for a walk or stay here?" 
Why: Getting up and moving makes a lot of people feel better a lot of the time. When I have a cold, I do so much better if I am able to get out and about a bit. I crave the business and exercise of the mall, or the chaos of high school hallways, or long walks in public spaces where I can pet strangers' dogs. My mind feels numbed by a stuffy nose and hoarse cough; the only path toward reconciliation with my ailing body seems to be reuniting myself with the outside world. But the connection between moving around and feeling better does not always ring true, and while it may help you with your ailments, a chronically ill person is the expert on their health and can usually sense what will or will not be beneficial. While "You just need to get up and get moving" is intended to be encouraging, it can come across as accusatory, plus the person who says it rarely has any medical credentials. As for the alternative, providing options is almost always a good thing, and the A/B choice helps with clear communication, especially when someone is in a lot of pain.

What People Say: "How are you feeling?" 
What Is Better: "What does it feel like?"
Why: It eliminates the "fine" response, and 50% of the time I am able to think of a humorous way to describe the pain. You will probably learn more, your friend will be glad to finally answer a different question, and you may hear a creative response that makes you laugh or cry or both.

What People Say: "It's going to be okay." 
What Is Better: "I'm going to be here, no matter what." 
Why: I really struggled with whether or not to include this one, because a well-placed "It's going to be okay" from someone you know really well can be an absolute lifesaver. There have been a couple times when it has been exactly what I needed. So I do not believe in banning the phrase, but I do believe in using it sparingly and considering the alternative first (which applies to all of these phrases, actually). Sometimes "It's going to be okay" feels kind of useless. If it is going to be okay, then is my current suffering illegitimate? How do you know it is going to be okay? Is it going to be okay with just with you, since you are leaving in an hour, or will the okay-ness extend to me as well? But I really do not think you can ever go wrong with a "I'm going to be here, no matter what," because, if you are genuine about it, it is a lovely statement with the ability to concisely but effectively promise that even if things are not okay, we will not be abandoned or forgotten.

What People Say: "You seem to be feeling much better now." 
What Is Better: "How does your pain now compare to your pain earlier?"
Why: Making assumptions about how someone is feeling is just not generally a helpful thing, especially when most of us basically have degrees in lying to people and making them think we feel better than we actually do. Asking questions is always better than tacking your assumptions on a person, and I think people assume that we must be afraid of questions when really we just wish that everyone would stop making up answers in their mind.

What People Say: "Do you need an icepack?" 
What Is Better: "We have an icepack here ready for you to use." 
Why: If we have to answer "yes" to needing something, it makes us feel like an inconvenience, particularly if this is a frequent thing given our situation. Plus, what if I say "yes" but subsequently learn that you do not actually have one and that you have taken it upon yourself to go out and purchase one? That would be sweet, but it would make me feel terrible, and I would miss you during your venture out into the commercial world. Knowing that you have something prepared is comforting. One time I was working away in a class during my sophomore year, and we had a student teacher who was leading the lesson. I felt awful that day and had just barely stumbled into class (sophomore year was rough for my lower joints), but I refused my teacher's offers to retrieve my wheelchair from another classroom because I felt like it would be a burden. Little did I know that while I was doing my best to concentrate on the material and not lose my mind, my teacher went to get the wheelchair without telling me. I only found out at the end of the class, and my teacher did not make a big deal about it, but it was a real lifesaver and I will always remember the relief and gratitude I felt when I saw it there. The moral: if you think someone might need something, let them decide whether or not to use it rather than whether or not to burden you with it.

     Hopefully this is helpful. There are no exact rules, just guidelines that I've illegitimately created as a way of trying to stumble through life with arthritis. The bottom line is just give hugs, hold hands, and cry a lil' bit. It is not depressing, it is comforting. Silence is okay, too. This is going to be a super strange comparison so bear with me, but the other day I was thinking about how whenever I am feeling poorly, our four family pets always seem to sense it. Instead of whining for extra food and attention with their sarcastic meows or irritated barks, they just sit with me and nap with me. They never talk or try to magically cure me. They just roughly match my state and stay close. I'm not saying to be more like a dog, but... I think there are many areas of life in which if we were more like our beloved canines we would be better off.

     You do not have to be an eloquent speaker or quick on your feet to be friends with a chronically ill person, you just have to be compassionate. Go and screw it up. Go and learn. Go and be brave.

Wednesday, July 13, 2016

Recovering With the Best

Our dog Lexi, who has been
napping with me this week.
   Last Wednesday I had my wisdom teeth removed and it was quite the experience. The surgery itself wasn't so bad; I was under general anesthesia so I did not feel a thing and the hospital staff were all very kind (my surgeon was fantastic). I am not always never the easiest patient, so being surrounded by supportive doctors and nurses is crucial for me. When my nurse started the process of putting in my IV, I was a train wreck. The last time I had an IV inserted, it was in one of those delicate veins on the top of my hand, and multiple nurses had to poke me several times. There ended up being blood on my hand, the bed, and the floor. But this time around was much better, because my mom was with me, there was only one nurse, she agreed to place it in the crease of my arm, and she even used lidocaine. I take every little blessing I can get.

     The worst part has just been the recovery. Luckily, I have not had much arthritis in my jaw lately and it has not seemed to flare postoperatively, which is a huge relief. I think the pain I'm experiencing now is normal, but it is always a struggle to know how much pain is too much since I have no one else to compare myself to. Unfortunately, in the midst of my medication-induced brain-fog I forgot to give myself my Orencia on Sunday night and only took it last night, so my knees, elbows, and wrists are pretty upset with me, and my right ankle even joined in the protest this morning. I looked down at my pitiful knees last night and audibly said, "Can you not," but then I just felt crazy and it certainly did not help the pain so I think I am done talking to my joints for now.

Kayla sitting in bed with me and knitting for 
a whole day while I did basically nothing but
cry, sleep, and spoon-feed myself a smoothie.
     The best part of recovery has been the people who have surrounded me with constant love and smoothies. On the day after the procedure, my friend Kayla (see Confessions and The Chronicles of Prom) came over and basically babysat me for 8 hours, which was incredibly generous of her, because I looked terrible and was reluctant to eat or sleep and there are so many other more entertaining things she could have done with her Thursday. To be honest, I don't remember most of the day, so unfortunately I don't have many funny stories to tell or moments of kindness to highlight, although I am certain they exist. Kayla texted me later to tell me that I started crying about my lips, which I thought the surgeon screwed up until about 48 hours ago, so I'm sure I was fun to put up with. Despite forgetting most of the day, I do remember trying my very best to stay awake in the afternoon, because I felt like it would be rude to fall asleep while she was there, but the pain medicine really knocks you out and I was struggling to even keep my eyelids open for more than a couple of seconds. After several attempts to logically convince me that I needed to go to sleep, she gave me some concise but firm ultimatum and I gave in. When I woke up my parents home and Kayla was gone (although she left a sweet text). Homegirl stayed with me until my parents got off work even though I was asleep. If that's not generosity, I don't know what is.

      As if that wasn't enough kindness for a year, Kayla took me to an appointment on Friday morning and came over with my friend Emily on Saturday night. The Friday morning appointment was hands down the most humiliating experience of my life, and that's saying a lot because I once didn't realize that buffalo wings were made of chicken (instead of buffalo) so I texted everyone I knew because I thought that no one else knew either. I was only having a TB test read at the appointment and picking up some forms for college, but I literally cried the whole time because the pain meds and hunger were making me so emotional. Everyone there probably thought I was crazy, but you gotta do what you gotta do and sometimes you gotta do it while you're all in your feels.

    All in all, my friends and parents have been so generous with their time this week. My friend Julianne, who recently had her own wisdom teeth removed, has been texting me advice, answering all of my questions, and assuring me that I will regain my mental health once I am able to eat normally. My mom stayed home with me the day of my surgery, and on Friday after Kayla dropped me off at my house I called my dad and both of my parents came home again. When Emily came over she brought me my favorite smoothie with a sweet "Feel Better" message on it, and my friend Taylor took me out to get smoothies on Monday (it seems like a lot of smoothies, I know, but basically all I can eat is smoothies so don't judge me). Faith is super busy with an internship this summer, but she still took the time to Facetime with me (pain meds make you miss people A LOT and I basically felt like I was going to die if I didn't get to talk to her). Finally, my whole youth group was over at my house on Sunday night, but I stayed upstairs because I was tired and weepy and afraid people would just laugh at me. But when I came down towards the end of the night, every single one of them gave me a hug and they were so nice to me even though I was a mess. Quality human beings.

     The most dedicated person of all this week has been my mother. She has held me, made me "mush" (the limited category of food I'm currently surviving on), taken off work, and kept me on track with all of my medicines. She's also dealt with all of my crying, and there has been a lot of it so that is an impressive feat.

     From the eyes of someone who is chronically ill, the pain from a wisdom tooth extraction is so minor compared to the everyday pain of arthritis. And there is so much hope in recovery! I can be certain that even though my mouth hurts now it will hurt less tomorrow. I will stop having appointments with my oral surgeon soon. She is seeing me in a window of my life - the summer I am 17 - rather than watching me grow up as my rheumatologists do. Instead of getting worse with time, the brokenness heals with time. The healing process is such a simple concept, yet it is also impossible to imagine when most of my doctor's appointments revolve around long-term care. I think I would be a much different person if I knew that at some point my arthritis would go away. Knowing that it won't takes a toll. And while remission is certainly possible and I may even be on that path myself soon, symptoms can come back at any time; there are no guarantees. So even though I am not enjoying the pain or recovery process, I am enjoying the ability to recover and I am feeling normal in that sense.

     Find people who will be nice to you when you are a mess. Find people who will love you when you have chipmunk cheeks and ice wrapped around your head. Find people who will love you when you can't stay awake even though you want to talk to them. Find people who will love you when you cry over Facetime because you miss them so much. Find people who will love you even when you are about to move away. Find people who will love you when you don't feel like yourself. Find people who will love you when loving you seems like an impossible task. They exist, they are worth having around, and they are so easy to love.