Sunday, November 29, 2015

Fatigue

     Flares hurt my body in all sorts of ways, but one of them is through fatigue. Of course, it does not seem so horrible. Most people associate "fatigue" with "tiredness," and I did too before I experienced it myself. I thought fatigue must be the way I felt after a long day of sports and tests at school, or after my parents took me to the NC State Fair in the fall and I slept in the car during the drive home.

       The peculiar thing about fatigue is that it is totally unpredictable and overwhelming. It is more than tiredness; it is the purest exhaustion I have ever encountered. Fatigue feels like an urge to sleep mixed with an urge to be at peace mixed with feeling like I might collapse. My longest walk between classes is my B-day walk from chorus to my independent study, and I dread it immensely. Once I am at my independent study classroom, I usually ask for a pass to the library, because it is easiest to work in there. So after making the first difficult walk, I trek to the library, and I feel more like a corpse than a human by the time I sit down. I am simultaneously being essentially attacked by a swarm of teenagers who are in a rush to end the school day, which really does not help the situation at all. I was embarking upon this ridiculously strenuous journey a couple of days before Thanksgiving break, and about halfway through I felt incredibly fatigued. I wanted a bed to appear, and I wanted to take a nap and stop moving my joints for approximately ten years. My hands were shaking slightly with the pain, and I think I looked pretty awful by the time I made it to the library. My body felt like it was shutting down on me.

       The other peculiar thing about fatigue is that it often affects my relationships with people, which is unfortunate. I am genuinely too tired to talk sometimes. I am too fatigued to try to figure out what people mean, or to decipher their sarcasm, or to laugh at their jokes. I need to be able to take things at surface value, and I need people to be straightforward with me, because I simply do not have the energy to entertain their complexities. I fear that this comes across as not wanting to be around people, but that is not true. I just don't want to use up all my energy in my interactions, because I have to save a lot of it. Naturally, this is easier with some people than with others. I hate feeling like I am rationing out my energy or time, but that is just the reality of it. 

     The worst part of the exhaustion is that it does not making sleeping any easier. I have struggled with getting to sleep and staying asleep for quite some time due to the pain in my joints. One would think that the more exhausted I am, the easier it would be to get to sleep, but somehow my body defies all of the laws of science and this is not generally true. 

     Despite the trouble fatigue is causing me, I am getting used to it. I know how to schedule myself to make the most of my time, and I am laughing about it a lot more than I am despairing about it. It's super lame to feel exhausted after walking less than a mile at Duke Gardens or after going to church, but it is what it is, and so I curl up under a blanket later in the day and laugh about how pathetic it is. I have convinced myself that watching "House" on Netflix and writing scholarship application essays is a good way to cope, but I suppose my methods are still up for debate.

     A few years ago, at the National Juvenile Arthritis Conference, I listened to a presentation given by Jeffrey Gottfurcht, the first person with rheumatoid arthritis to successfully climb Mt. Everest. As a 13-year-old dealing with the same disease, I was filled with questions. I wondered how he combatted the fatigue. Even for healthy people, that journey is extremely dangerous and unbelievably tiring. For now, high school class changes are my Mt. Everest. But with all of the advancements in RA treatment, maybe one day my Mt. Everest will be the real thing. 

Sunday, November 22, 2015

Everyone Is Taking My Blood

       When I was in the sixth grade, one of my teachers asked me how my treatment was going. I remember taking a moment to think, feeling overwhelmed by the question. I was not getting any better, and nothing my medical team was doing had taken effect yet. I was going to appointments constantly, but I was still in a lot of pain. I finally blurted out, "Everyone is taking my blood."

       Of course, I was referencing the many blood draws that my medical team always seemed to need. Blood has always felt very important to me, and rightfully so, since it plays such a crucial physiological role in human health. I have become a pro at blood draws, and I am convinced that I could draw my own blood better than some phlebotomists at this point in my career as a medical patient. I know where to tie the painful rubber band, how to pump my hand until the vein is visible, which of my veins is best to use, and how to take the needle out manually before retracting it. Yet every time the phlebotomist starts to stick the needle into the crease of my elbow, I feel my heart flutter a little bit, like I'm still not sure whether or not this is okay with me.

       I used to be surprised by the volume of blood they took from me. I wondered how much I had left, and if I could replenish my supply quickly enough. Even now, it just seems like after a certain amount of time they will have taken all of my blood, and what will be left of me?

        There are good and bad phlebotomists, and interacting with them is always an experience in and of itself. The best ones are pros at drawing blood and take a lot of pride in their profession. The worst one I ever had questioned my pro-feminism shirt and made many sexist comments. Unfortunately, it is very intimidating to argue with someone who is about to stick a needle into your arm, so I did not defend feminism as well or as thoroughly as I wanted to. To top it off, I was stuck many times at that particular appointment, which was only about two months ago, before blood was found.

         When I used to have rheumatology appointments at the children's hospital, I would always be sent down to phlebotomy at the end of my visit. During one particular appointment, I limped in, exhausted from the exam and in a lot of pain. I was frustrated with the lack of treatment I was receiving, and wishing that I had more options as far as choosing my own rheumatologist. Despite how horribly the appointment went, I managed to maintain my composure the entire time, and looked pretty stable when I stuck my arm out expectantly on the beige table. My phlebotomist was very kind and calm, but as soon as her needle punctured my skin I burst into tears. She was concerned, and her face writhed with my pain, but she proceeded nevertheless, afraid that withdrawing the needle would only hurt me more. "What's wrong?!" she asked, surprised by my outburst.

       "I'm sorry," I said, unable to wipe away the tears slipping onto my sweater due to my hurting hands, "I'm so sorry. It's not you, it's just been a long day." While this incident was horribly embarrassing, and a bit humorous in hindsight when I think about how pathetic it was, the phlebotomist was understanding. She attempted to reassure me with some comforting words that I paid little attention to before patting my hand and sending me home.

       Sometimes, I break. It usually happens at the most awkward and inconvenient times, which I will say makes sense considering how awkward I am in general. It often takes people, such as my phlebotomist, by surprise. I can see how it would be easy for her to take it personally, or to assume that my tears were a response to her prick. I do not fully understand where the line between "okay" and "a mess" is and how to predict when and where I will cross it. I suppose I am still learning.

       That said, I "broke" again at my most recent rheumatology appointment, which was on Tuesday. The appointment went well, but then came the labs. I waited outside the infusion and blood draw room (basically a needles room, if you ask me) for what felt like forever, replaying the appointment in my mind, thinking of all the things I wish I had said that I didn't. The phlebotomist was not using a butterfly needle, and I was too fatigued to make that request. She stuck me very well, but I am almost certain they took more vials of blood than they ever had before. I watched the maroon liquid fill the tube, and I knew it was my own, but it felt foreign to me. Am I my blood? Is my blood me? Every time she picked up a set, strategically interweaving the vials between her gloved fingers as they filled up with the fluid that I knew would be analyzed solely for its imperfections, I figured it must be the last one. Yet she had a whole bucket of different tubes, and I felt rather bloodless.

       By the sixth vial or so, I was teary and worked up. The phlebotomist asked if I was okay, but seemed to understand that I was just in a state of distress and that my pain was in my joints rather than in my arm. I nodded and laughed unconvincingly, but she let it go, which I very much appreciated, because I really did not feel like explaining everything to someone I didn't even know. When she finally retracted the needle, my bleeding did not stop, and soon a pool of blood formed on my arm and splattered onto the chair. We wiped it up quickly with gauze and applied some serious pressure, which, thankfully, distracted me enough to stop my crying. Part of my arm was soaked in a disgusting mixture of blood and tears, so it's definitely not a life moment that I'm proud of.

       Everyone is taking my blood, in a million different ways. During flares, I feel as though all of the life has been sucked out of me. I wonder if the treatment is hurting me more than the disease itself. I wonder if my health would improve if I stopped going to doctors and stopped letting them take my blood. Of course, realistically, I know that this is not true. I have a huge problem with homeopathy and natural remedies, though I suppose if they work for some people I have no reason to oppose them. I need my doctors, and I need my healthcare team. I just wish they would let me keep all of my blood.

Monday, November 16, 2015

Ways to Help

     I've been dealing with a moderate flare lately, so I am able to walk, just not very quickly all of the time, and I am able to continue going to school and participating but I often find myself in pain. Many of my friends and teachers have asked what they can do to help. In the moment, these requests feel overwhelming to me, although I know their good-hearted intentions. It is difficult not to feel dependent, or helpless, and much of the time even if I know something that would be helpful I am reluctant to ask for it.

     It seems that the best approach for dealing with these types of situations is preparing people ahead of time for what to do when someone is flaring. Many of these suggestions are derived from my own experience, but I threw in a couple that I know some of my friends with chronic illnesses place more emphasis on than I do. My list is not comprehensive. There are many more things that help, and I do not intend to create an encyclopedia of them.

     So, without further ado, here are suggestions for how to help:

1. Slow Down
     As someone who experiences rather frequent pain in my knees and hips, I often feel like the whole world is moving in fast-forward around me and I am stuck in slow motion. People pass by, and I want to keep up with them, but I know I can't. People stare, because I look pretty strange walking at 2 miles an hour to my next class, and it is very intimidating. Slowing down can be helpful to a person experiencing a flare because it combats some of the isolation. Most of the time, I end up laughing at how awkward my companion looks trying to walk as slowly as I am. Laughter is a good thing.

2. Don't Push the Jokes
      While laughter is lovely, sometimes it is just not appropriate. Sometimes I feel like joking about my condition and about the world, and sometimes I feel like telling jokes is a dismissive way of approaching pain. I often have trouble understanding humor when I am in a lot of discomfort, which just ends up being super awkward and making me feel like a terrible person. However, jokes can also be my saving grace. Generally, I think it's best to ask before trying to work humor into your conversation with a flaring person.

3. You're Hot, Then You're Cold
      Many people living with rheumatoid arthritis and other inflammatory conditions constantly switch back and forth between heating pads and ice packs, or similar temperature control items. These products are lifesavers, especially in the short-term. Often, heating up a product that provides heat relief or finding ice/a freezer is a pretty daunting task. At my school, ice is in the basement, so I often need it but then decide that all of the walking it would take to go get it simply is not worth it. Being aware of the availability of hot/cold products and helping a friend keep one accessible at all times is incredibly helpful.

4. Hugs and Other Mushy Things
      Sometimes, you just can't help with the pain. It is difficult to acknowledge, and I find it challenging to accept that there is sometimes nothing I can do when I see other people in pain. However, even simple things like a hug or a kind note can mean a lot. If you're going to touch someone, I would ask first, but most of the time these gestures will be welcomed. Feeling physically and mentally isolated can be an uncomfortable experience, and often simple acknowledgments of suffering help.

5. Creative Company
      I am not one to miss school much, but many of my friends are forced to stay home from work and school rather frequently due to their health. The idea of "creative company" involves meeting someone who is sick where they are. Maybe it means watching Netflix on the couch, or maybe it means baking something simple. Maybe it is just doing your homework from across the room and drinking tea. Staying home is awful, because it is lonely and it is easy to feel like everyone is just waiting for you to get better. Hanging out with someone who is not feeling well lets them know that they are loved even when they are at their most broken. As I shared in my previous post, I think this is a beautiful thing, and it applies to everyone dealing with an illness, whether or not that illness is chronic.
     To add to this, I want to emphasize that you can definitely still include your friends with chronic illness in outings that you're going on. Trips to coffee shops, the movies, and the library are usually very doable during flares, depending on fatigue levels. Even if someone is too fatigued to participate, the invitation conveys that you care about them and have not forgotten about them, and that is important in and of itself.

6. Force Your Help
      Do not ask how you can help, just help. Or do both. I know that is much easier said than done, but actions are a lot more valuable than empty words.

7. Be Genuine
      If you don't know what to say, that's okay. I still find myself at a loss for words sometimes when people tell me about their autoimmune conditions, and I've been living with one for five years (so much for becoming wiser). It is totally okay to say, "I don't know what to say" or "I don't know how to help." You are not supposed to know how to do everything all the time, but I think authenticity is essential. A lot of people try to say the most eloquent things or share deep insights, but sometimes this comes across as forced and even a little condescending. I think honesty is the best policy in these situations. As someone with a chronic illness, I don't expect people to turn into Aristotle or Socrates just because I'm in a flare. So ask questions, be a little reckless, see what happens, and learn for next time. That's all anyone can do.

Monday, November 9, 2015

Weeping

     My Sunday was hectic. After church and lunch, I went grocery store shopping, made herbed lemon tofu as quickly as I could, attended a potluck, and searched the mall for shoes. I was unable to attend my regular Sunday night youth group due to the timing of everything, so I figured I would just buy the shoes I needed and then go home. While searching the shoe store, feeling exhausted and somewhat defeated, I remembered that Taizé would be taking place a bit later at the local Episcopal Church.

     I am not quite sure where I stand denominationally. I have only regularly attended Baptist churches, and I absolutely love my current (Baptist) church, but I have always felt drawn to the simplicity of the Mennonite Church, and for a few years now I have self-identified as Episcopal. These traditions are all very different, yet somehow I find myself connecting with all of them. I suppose I do not have to put a denominational label on myself, but I do think denominations are important, as the theology they espouse provides stability in churches that might otherwise wander away from core beliefs. I am uncomfortable with the idea that identifying as non-denominational is the most beneficial to the unity of the Church, simply because I do not believe that the evidence suggests that that claim is true. Perhaps I just need more time to figure it out.

     I was first introduced to Taizé services by a dear friend I met at a summer theology program. She was dealing with a chronic illness of her own, and shared with me the influence that Taizé had on her life. In a sense, Taizé is a service of suffering. It is quiet, with ample time provided for silent prayer and a few songs, some as short as four measures, that are sung over and over again. The instruments are played in the back of the worship space, and in the front there are usually candles and/or religious images.

     Needless to say, the Taizé service was lovely, and I was very glad that I was able to go. I did not complete any homework beforehand and knew that I was ensuring myself a late night, but I could not bring myself to prioritize my schoolwork over time of peaceful reflection with God, and I was confident that I could manage everything. It seems that Taizé is the only type of church service that does not suck any energy from me. I am constantly tired, and the pain I am in only exacerbates the fatigue. I love talking to people and I'm eager to participate in complex theological discussions whenever and wherever the opportunity arises, but during flares all of these issues seem to diminish in their importance to me. Even at school, I feel worn out by the social interaction that takes place, although I crave it simultaneously. At Taizé services, I say a short, friendly greeting when I arrive, and then I leave in total silence. Tonight, I talked to one woman and to God, and that was it. All I had to do was sit and sing and pray, and the singing component is basically optional. I do not have to worry about whether sitting down and standing up will cause a rush of pain to my knees, and I do not have to dread walking to the front to receive communion or even flipping the pages of a hymnal. I do not even have to worry about how to respond when someone asks me what is wrong, or if I am okay. The simplicity of Taizé makes my broken body feel capable and whole.

    I am constantly distracting myself from pain. How else am I supposed to cope? I stay busy and do my best to keep up with everything. Taizé services are gentle and focused; I am unable to distract myself, and I am keenly aware of every part of my body that hurts. This seems like it would be an awful experience, but it actually is not. Instead, I feel like God is recognizing my suffering, and I am allowing myself to stop my desperate attempts to distract my mind for an hour. I refuse to accept theology that tells me that God is testing me through my illness, or that it is some type of punishment. I even resent "greater plan" theology, which suggests that God made me sick to make me a better person. Who would do that? It seems cruel to me. Worshipping in Taizé services feels like receiving a gentle hug from a God who is just as saddened by flaring joints as I am. During Taizé, God is weeping with me.

     One of my favorite hymns is "Servant Song." My favorite part of the song is,

"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."

     There is something beautiful about ditching heroism in favor of empathy. There are times when problems need to be fixed, and proactive responses must be taken by those in power. However, there are also times when nothing can be done. I think we shy away from those times because they make us uncomfortable. We hate feeling useless or helpless, especially when someone else is in pain. But sometimes, all someone needs is a presence. Maybe, helping just means sharing tears, or holding a hand, or giving a hug. When my grandmother on my mother's side passed away, a funeral was held for her in a city about an hour away. My mother still remembers the church members who attended that funeral, solemnly hugging my family and offering their condolences. I think the reason that she remembers who came so well is that few people are actually willing to weep with someone else. Weeping hurts; it is not fun, and it is not the type of thing you send out a flowery invitation to. Yet what could be more human? What could be more holy?

    There are a billion things I want to do with my life, and I am still figuring all of that out, but I am quite confident that I would like to be a hospital chaplain for at least a few years. I think being a chaplain for people who are suffering or dying would be enlightening. I also know that I am the type of person who is always ready to weep with someone or laugh with someone. It is a job that would fit me well. Most people give me a bewildered look when I reveal this part of myself to them, and I understand it completely. How could someone voluntarily subject themselves to that amount of pain? But I understand pain, and I understand healthcare, at least to the degree I am able to given my past and current experiences. There is some sense of responsibility that comes with this intimate knowledge, an obligation to use it to provide empathy for other individuals. Along with the call to laugh when someone is laughing there is an even more divine call to weep when someone is weeping, whether or not their reason seems ridiculous, or they have cried about it a thousand times before, or they are what society would deem a "lost cause." I want to accept the call to weep as fully and as humbly as I can.

Wednesday, November 4, 2015

Talking to the Medical Team

     I assumed it would take me more than one day to write another post, but unfortunately I have been home all day with flaring joints, so I've had a bit of spare time on my hands.

     Last night I was beginning my calculus homework, which typically is not the hardest thing ever for me but does require considerable thought. However, I was finding it impossible to focus due to the pain in my left knee. I could not seem to get comfortable, and my knee ached whether it was bent or straight. Frustrated, I planned to do my calculus and physics homework in the morning, and set an early alarm, but I knew as soon as it went off that I had no chance at making it to school.

    A few years ago, I was seeing a physical therapist once or twice a week, and we were primarily focusing on regaining some of the strength I had lost in my hips during a flare. "Tell me if it hurts," she would insist before instructing me to do a variety of exercises and moving my hip with her hands. I would always stay silent, and then my lack of conversation would concern her and she would say, "Are you okay?" Inevitably, I would hold my breath and try to mumble, "Yes" before dissolving into tears.

    I confused her a lot. We never really "clicked," or understood each other. She could not understand why I let the pain become so acute without alerting her. Of course, I made no attempt to explain myself, which definitely did not help the situation. I am currently not in physical therapy, which is a good thing because I have absolutely no idea how I would fit that into my schedule, but I often think about the interactions she and I had in that sterile hospital room with the physical therapy "toys" that seemed a lot more like torture devices to me.

    I still can't pinpoint exactly why it was so hard for me to communicate with her, but I probably need to figure that out soon, because I sometimes make similar mistakes with my rheumatologist. I downplay the symptoms or say I'm okay with treatment plans that really don't seem aggressive enough to me, and I am reluctant to talk about the pain and the effect it has on my life.

     I hate staying home, so I guess I'm just going to have to be honest at my next appointment. My rheumatologist probably needs to know when the pain in my knee stops me from being able to focus, because it means my current treatment is not sufficient. Maybe I'll try to write down some notes ahead of time so I don't freeze up when I get there. Until then, I'm going to hang out with Meredith Grey and test how many times I can heat up joint packs before they break.

Sending love and spoons,
Rachel

Tuesday, November 3, 2015

Hello, It's Me

      "Hello....it's me....I was wondering if after all these years you'd like to meet..."

      Adele references aside, my name is Rachel and I have no idea whether or not I will regret creating this blog a week from now, but I am just going to go for it because I really don't have much to lose. I am the author of the blog "The Kid With Arthritis," which has been inactive for a little over two years now. It feels like a good time to start fresh.

     Many of you will know me from my former blog or from my "real life," but introductions still feel appropriate. I am a sixteen-year old high school senior living in the beautiful but often frustrating state of North Carolina. Accordingly, I am finishing up high school and applying to college, which is not my favorite process. I like theology, music, politics, Grey's Anatomy, social justice and history. I really don't like arthritis, but I do like the people I've met through the chronic illness community. I think I want to major in public health, but I am also very interested in environmental studies and women's studies. I identify as a Christian and an intersectional feminist.

     I was diagnosed with acute polyarticular juvenile rheumatoid arthritis when I was 11 years old, so I've been dealing with it for about 5 years now, and it is definitely not something I have enjoyed. My arthritis affects almost all of my joints (though somehow my shoulders have been spared), and currently it is flaring the most in my knees and hips.

     That brings us to "Rachel + Rheum" (spoken, "Rachel Plus Rheum"). It took me a ridiculous amount of time to think of this title, so I hope you are satisfied with it.

    Why am I writing this blog? Part of it is that I've realized that people like to be informed, and somehow writing everything out seems easier than discussing my rheumatically complicated life with every single person who asks. Part of it is an urge to write. I miss my blog, and while I am overwhelmed with college essay writing, I crave writing that is free and that lacks a thesis. I also want to be more connected in the chronic illness community, and I've finally recognized that this requires a degree of vulnerability that I have shied away from over the past few years.

     Wish me luck. I'll be posting actual content sometime in the next few days!

Sending love and spoons,
Rachel