Wednesday, December 23, 2015

Presenting to Rep. Price


      On Monday, I was invited to present an award to Representative David Price on behalf of the Arthritis Foundation. We gave a Congressional Arthritis Champion Award to Rep. Price in honor of his membership in the Congressional Arthritis Caucus and his sponsorship of legislation that benefits arthritis patients by making expensive medications, such as biologics, affordable for a wide range of patients. Additionally, Rep. Price is very conscious of the dire need for the expansion of medical research in the United States, particularly research that overlaps and unlocks clues to the potential cures for many different diseases. We spoke with Rep. Price about the challenges faced by patients with arthritis and shared a little bit about our personal health stories, especially our struggles with medication, while discussing the role the government does and should play in ensuring quality healthcare for residents. I am thankful to have a congressman who cares so much about his constituents and who is well-informed about the realities of arthritis. Arthritis is the number one cause of disability in the United States, and it is an epidemic that all legislators and government officials should be aware of and should be actively fighting against.

      Being an Arthritis Ambassador for the Arthritis Foundation is one of the most rewarding experiences that I have had as a result of my illness. I have learned how to translate my personal medical concerns into legislative goals, and it is empowering to be able to take action against the injustices I see in the healthcare system. The Arthritis Foundation provides Ambassadors with monthly assignments and local opportunities to be involved. Additionally, being an Arthritis Ambassador has connected me to wonderful people throughout my community dealing with similar health problems. Everywhere I go, I am able to meet people whose hair also falls out at alarming rates and who feel intimidated by the thought of walking a mile on a flare day. We exchange stories and ideas, laughing over the number of rheumatologists we have scared away with our complex medical cases and unashamedly inquiring about the random side effects we are experiencing.

      If you are interested in getting involved or learning about the Ambassador Program, click here to be directed to the Arthritis Foundation site that will help you take the first steps. It is well worth your time and energy, and that is saying a lot, since most of us do not have a ton of either of those.

Sunday, December 20, 2015

Confessions

     I am not the most transparent person. I have never been one to outwardly express what I am thinking or feeling. But I want this blog to be honest, because a lot of what I saw when I was first diagnosed was a bunch of people claiming to be positive all of the time and to have everything figured out. These depictions of life with a chronic illness caused my to constantly flip back and forth between not buying it and feeling inadequate for the painfully ungraceful ways in which I was coping.

     Sometimes, when I am brainstorming what I want to post about, a topic comes to mind that I almost mechanically brush aside for later, because I feel like I do not have it figured out yet. Sometimes (often, if we are being honest) I do not know what I think about a situation and I do not know what the right thing to do is. So I simply do not write about these things, or I stuff them into blog post drafts with the intention of writing them when I am older and wiser. But this is an unfair way to operate a blog and also an unfair way to live as an advocate, because it would have helped me a lot if more people wrote about the more complex issues, and so I will stumble through this blog post with limited insight.

     Disclaimer: I really am not qualified to talk about anything. I don't even have a high school degree yet.

     I am very introverted, but I am also head-over-heels in love with humanity. As I wrote about in "Weeping", I think the best way to love people is to show up, whether the showing up is difficult or easy. The best friends are the kind who run errands with you, because they evidently enjoy being around you. I love these kinds of people, and I try my very hardest to be one myself. My friend Kayla has accompanied me to my last couple of rheumatology appointments, and I have been so thankful for her willingness to do so, because it helps me to realize that my social life does not have to be completely disconnected from my medical life. Additionally, she understands and laughs at my rheumatologist's jokes even when I don't, which is slightly disappointing on my end because I need to be better at understanding jokes in general but undoubtedly makes for a less awkward appointment on the whole. Showing up is important. It is a quality I deeply value in the people around me, and I want to be equally as present.

    I always want to show up. When people invite me to things, I want to go, because I know how critical it is to spend time with people, and how much love that displays. And I really, genuinely do love my friends that much - they are fascinating, intelligent people with bright futures and heaps of potential. My father invited me to a UNC vs. Tulane basketball game, and I went, even though I had a calculus test the next day, because I want to spend time with him and I want to have a life. I certainly do not regret making that decision and I had a great time, I just am exhausted. I like people, and I think that my love for those around me is being unintentionally exacerbated by me being a senior in high school this year. I might stay close for college, but I might go far away, and so I am really not sure how much I will be able to see my friends and family. I do not want to forget to do or say anything. I feel an urgent need to tell people everything that is great about them, to get to know them better, to be quick to apologize, and to offer my time and resources whenever and wherever possible, because I want to build relationships that are strong enough to survive the powerful winds of separation that college will inevitably bring.

     This is all complicated by the simple fact that I am extraordinarily tired. My energy levels are infinitesimally small these days, and honestly getting out of bed has been embarrassingly difficult. Over the course of only about two weeks I went from never hitting the snooze button (not an exaggeration) to setting ten different alarms for five minute intervals. Every time one goes off, I try to move a different joint, until they finally feel loose enough for me to step into the shower, where even the pressure of the water from the shower head makes me wince when it touches my tender joints. At school, I am constantly preoccupied with sleep. I find myself planning out my schedule down to the minute, thinking about where I could possibly fit a nap in. Could I sleep on the floor of the library at lunch? Could I nap in my car for a few minutes before my extracurriculars start? What would happen if I fell asleep at my allergist's office after receiving my shots?

     The fatigue is overwhelming, and although I am ashamed to admit it, I do feel like it is adversely impacting my life. At the same time, I have reached a point where I want to be with the people I love all of the time, because what time is there to waste? Usually, when I attempt to explain this to people, they respond (with good intentions) by repeatedly assuring me that I am not obligated to attend any event or hang out with anyone. But I am well aware of this. I have the right to refuse whatever offers I want to. The problem is, I don't want to refuse them. I want the best of both worlds; I want my body to have energy and I want to be able to care about people by showing up. If chronic illness has taught me anything, it is that people must be prioritized. I hate saying "no" to people when I am invited to various functions, because in addition to desperately wanting to go, I also fear that if I say "no" too many times people will just stop asking me altogether, which seems isolating. But I also want to be fully present at the events that I choose to go to, and I wish my eyelids would stop feeling so uncontrollably heavy even after nine hours of sleep. Should I stay home, since I am tired and cannot be the "life of the party?" Or should I go, because my presence sends the authentic message that I care and want to be involved in the lives of those around me?

     So I am in a pickle (I've really been overusing this phrase lately, and it's super obnoxious, so I'll try to stop). I love everyone and I want to learn from them and spend time with them, but my body is barely feels capable of stepping into the shower. I am not sure how to respond to this conflict, and I do not have an eloquent summary of the somewhat futile steps I am taking to figure it out. I am just clumsily stumbling along, hoping I will run into something brilliant, frantically trying to remind people that I love them even though I cannot always be with them.

Thursday, December 17, 2015

Procrastination of Thought

     Well friends, I did it! I officially gave myself my own Orencia shot - it really was not bad at all and I am very glad that it was successful.

     I thought I would be able to just stick it right in, but after about five minutes of pinching up my skin and rubbing the spot on my thigh again and again with an alcohol swab, I realized that my needle was not really getting any closer to my skin. In an effort to distract myself, I called my friend Faith.

Photo kindly taken by Kayla
      Faith and I go back to the eighth grade, and I really don't know how we became such good friends, but it just kind of happened and I am glad that it did. She is by far the most reliable and authentic human being I have ever met, which is a real blessing because I know I am not nearly as reliable or authentic as she is and I often wonder why in the world she puts up with me. Whenever I need someone to vent to, or when I want to say something that I know will not make sense to anyone, she is the person I call. Faith always picks up the phone, willing to discuss whatever is on our minds, happy to share her opinions with me and eager to hear what I think. She doesn't choose between listening and giving advice; she does both, when and where it is appropriate. I am thankful that she is comfortable joking about my health and that she has not shunned me yet for always throwing my loose hair on her. Somehow it doesn't matter to her whether or not what I am thinking is logical or sane, she just accepts it for what it is and we move on. I am incredibly proud of her achievements and of her character, and I feel lucky to know such a wonderful person. There is no one else I would rather choreograph elaborate dances to Adele songs with in social studies classrooms after school. It's a good time.

     So back to the story. Faith gave me a full analysis of the awkwardly endearing show "Glee," which she is basically an expert on. It sounded to me like she was passionately defending a dissertation on the development of the show over the course of its seasons, but really she was just being her normal self, which is pretty amazing. As she was telling me about her dislike of a few of the musical numbers performed, I managed to slide the needle into my skin quickly. I pushed the medication in very slowly, but I was overjoyed. It did not hurt in the slightest, and I felt very accomplished. After Faith heard me verbally congratulate myself, she said "Good job! Okay back to Glee..." and continued on, which was exactly what I needed at the time because it took me about a day and a half to push all of the medication in.

     I am glad that I am able to give myself my own shots now, but also it is really a pointless skill if the medication in them does not help. My rheumatologist said it could start working in as little as 3-4 days after my appointment, but this was my third dose and I must say that I feel nothing. Over the course of the day, I have experienced pain in my knees, hips, ankles, elbows, wrists, and fingers, which seems like a lot of joints now that I have written them all out. I've noticed inflammation in my wrists and my index PIPs, but I really don't know what to do about that. Walking to class, particularly in the morning, has been difficult, and unfortunately my first period class is one of the furthest rooms from the parking lot.

      I have only worn my knee braces for one day since Friday, which has proven to be a pretty dumb move. I am not proud of this, but sometimes I don't wear the braces because I feel like they're ruining my outfit or making me look "weird." Sometimes I just want to blend right in, so I can pretend that no one knows about my illness, even though I am surrounded by friends who are well aware of the condition my body is in. But by mid-day, it felt like someone was punching my knees as hard as they could every time I moved them even the slightest bit. However, I was #blessed this past weekend because I assumed the concert I was going to with friends on Saturday night was a standing thing, but it was actually a seated event. It was quite the miracle, I must say. Despite the seats, I was flaring all over and my hair was falling out in handfuls by the time I left, but I just tossed it aside (literally) and promised myself that I would think about it later.

      Maybe I can just think about all of it later. Maybe I can pretend like the Orencia is working, like my joints move as smoothly as butter, like my hair is thick and healthy, like I have boundless energy, and like I am not a burden to everyone during my flares. Until then, I will keep calling Faith, and dancing when I can, and watching reruns of Grey's Anatomy, and holding my own concerts when I'm driving alone in my car. I will think about it later.

Wednesday, December 9, 2015

Hair

     Hair has been a somewhat sensitive topic for me ever since I first started methotrexate, which, if I recall correctly, was in the sixth grade. Methotrexate, for those of you who are not familiar with the medications commonly used to treat rheumatoid arthritis, is a DMARD (disease-modifying anti-rheumatic drug) that attempts to stop the immune system from attacking healthy tissues. In RA patients, it is a low-dose form of chemotherapy. I am no longer taking methotrexate, but it is one of those medications that kind of creeps on you for your entire life, which is hard to explain but is not the focus of this post.

      I have never lost my hair entirely, which I am immensely grateful for, but I have lost enough of it to upset me. I freaked out when it first started shedding. It seemed like it was everywhere. Piles of hair dusted my bathroom floor, my shower drain was constantly clogged, I was always pulling stray hairs off of my clothing, and my friends all noticed how quickly I was losing it. I recognized the thinning immediately and tried to brush my hair very delicately, counting the number of days before I had to clean out my hairbrush in hopes of extending that interval as much as possible. Occasionally, I would become frustrated and brush my hair aggressively, feeling like there was no point in trying to keep it all in.

     Due to my hair loss, I saw a dermatologist, who confirmed that it was likely the result of both my medications and my anemia. We hoped that a combination of folic acid, birth control, and iron would strengthen my hair and conserve as much of my iron as possible, but I still lose it pretty frequently. One day during my sophomore year, my hair was falling out as fast as tofu burns (particularly quickly for those of you who avoid tofu). I ran my fingers through it repeatedly and very tenderly pulled out twenty strands at a time. I was incredibly stressed, not knowing if the pace was a temporary or permanent thing. It was falling out so much that I left class several times and went to the bathroom, where I dropped clumps of hair into the trashcan and looked at myself in the mirror for an embarrassingly long amount of time, wondering if the hair loss was visible to other people yet. I could not focus at all that day, and explaining my dilemma to the teachers and friends I was surrounded by felt impossible.

My hair at its longest,
a few months ago
     My hair was way too long a few months ago. The ends were split, it was dying, and every time I promised myself I would cut it I backed out right before scheduling the appointment. The thought of cutting my hair, or even just trimming it, was very off-putting to me. It seemed like I spent all of my time trying to keep it in - why would I voluntarily chop some of it off? Cutting off my hair felt ungrateful to me. But I ended up allowing the hair stylist to shorten it by about three inches, and I am a better person because of it, or so they say.

    Over the past few weeks, I have started losing a lot of hair again. It falls out in handfuls at night before I go to bed. Sometimes when it happens, I just laugh or think it is gross and then throw it in the trashcan. But sometimes I sit for a minute and stare at the strands woven around my fingers, saddened by my body's inability to retain my hair.

     I think everyone should do whatever they want to with their hair, and I am all for allowing people to make their own decisions about their bodies, but I will admit that it frustrates me when I see people dyeing healthy, naturally colored hair. I just want my hair to stay in - I could not care less about the color of it. When I see people dyeing their hair, I feel disappointed. I don't damage my hair; I almost never use heat on it and I have never colored it. How could someone take healthy hair and put it through such a dehydrating and destructive process? How does it feel to have hair that is so healthy that you can voluntarily damage it without considering that it might fall out? How could you possibly value the color of it more than its health? How does it feel to take your hair for granted, in a sense? Every strand of my hair is so precious to me. I guess I just wish I could say, "Your hair is healthy. Be grateful. Don't damage it." But I fully recognize and accept that this wish is just me trying to cope with my own insecurity about my constantly falling hair, and I certainly do not hold anything against people who choose to change up their hair color.

    I used to try to tell myself that it was just hair, and that it did not matter. Of course, there are much more important qualities about a person than their hair. In the grand scheme of things, hair is not the end of the world. But it is important, and it does matter. Telling someone who is losing their hair that it is not a big deal is dismissive of the grief that naturally comes with waking up to a pile of hair on your pillow. The reality is that hair is important, both culturally and personally. It is a common way people choose to express themselves, and as a woman the expectations are particularly high. As I find loose hairs all over everything, I feel those pangs of grief, and sometimes I am okay with laughing about how pervasive the issue is and sometimes I just feel like sinking into the ground. When I lean toward the sadder side of that equation, I try to stop myself as quickly as possible. So many individuals experiencing chronic illnesses lose all of their hair, and it seems horribly selfish to be upset about the amount that I'm losing, which is not very much in comparison. But losing hair is hard, and I wish it would stop happening. Until it does, I am sorry for my shedding. Any tips on keeping my hair in my head would be greatly appreciated!

Saturday, December 5, 2015

Forgiving Myself

      I stayed home from school yesterday, and I felt terrible about it. I volunteered as a babysitter for a community event on Thursday night for three hours, and by the time it was over I was completely exhausted. I love kids and really enjoy learning from and working with them, but I was worn out and could feel my body giving up on me rather rapidly. Still, when they wanted to sit on the floor and solve puzzles I wanted to participate, and when they wanted to color I picked up crayons and scribbled with slightly swollen PIP (finger) joints. Of course, I am not always in this amount of pain, and I am a competent childcare worker, but I was not pacing myself very effectively. By the end of the night, I was terribly fatigued and was keenly aware of how slowly I was moving. Several people encouraged me to take the day off on Friday. I was resistant to this idea at first, but finally surrendered.

     I am trying to be healthier. For me, a big part of being healthier is taking time off when I need to, and staying home before my body goes completely crazy instead of letting things get really bad and then reluctantly staging a medical intervention for myself. Of course, taking time off/staying home is also a very frustrating experience. Yesterday morning, I laid in my bed for a little while, staring at the light blue walls in my room. I absolutely adore my bedroom, and the way the sun streams through my curtains is lovely. I wanted to get up and be productive, but my knees were locked and my chest felt heavy. I contented myself with thinking instead of working and fell back asleep.

     I genuinely love school. My classes fascinate me, and my teachers are incredible. I am taking as many courses as I possibly can this year. Unfortunately, my body cannot always keep up with this pace. Yesterday I was making pancakes, which has become a sick-day tradition for me, and as I was staring at the air bubbles in each pancake gently popping all I could concentrate on was how guilty I felt about missing school. People tell me that it is not a burden, but I know that it is. It will take my teachers time and effort to work out a schedule for my make up work, and I am a day behind now.

My adorable mother and I at the Jingle
Bell Walk/Run for Arthritis this morning.
    Because I stayed home from school, I was able to fulfill my role as a co-director of my school's a cappella group yesterday afternoon (though I was a little out of it), and this morning I volunteered for the Arthritis Foundation in my local Jingle Bell Walk/Run for Arthritis. My responsibilities included handing out information on arthritis, pain, and medications, as well as asking participants to sign a petition to Congress in favor of a bill that will hopefully address the severe shortage of pediatric rheumatologists in the United States. In these situations, I remember why rest is so important. To be good at anything, I have the energy to start and finish it. Forcing myself not to miss a single class period is not being a responsible student, it is being a stubborn human being. It is denying both the existence and severity of my arthritis, which is unnecessary and is harmful to me both physically and psychologically.

    I am learning how to forgive myself. I am learning how to look at my flaring joints and tell myself that it is okay for me to acknowledge that I am ill sometimes. It is okay that some days I just can't do it. Of course, it is horribly not okay at the same time. It is not okay that anyone should have to experience pain so intensely and frequently that their body starts to feel like it is collapsing on them. But just for today, it is alright with me, and just for today, I am forgiven.

Tuesday, December 1, 2015

Shots, Shots, Shots

      After being off of any injectable medications for a little while, I have recently started Orencia (abatacept), a biologic with a pretty logo that requires weekly subcutaneous injections. My rheumatologist seems to think very highly of this medication, and I am up for anything that might get my flare under control, so I happily accepted his prescription. The rheumatology staff gave me the first dose in the office, and provided me with a sample dose to take home for the next week. For the following weeks, I was supposed to receive the medication through delivery services.

     However, acquiring the medication has been a complete fail so far. I am supposed to be getting my third injection tonight, but because of errors between the drug-sending people (don't judge my lack of sophisticated language) and the rheumatology clinic, it is not yet on its way. Everything in the healthcare world seems to take a very long time and the bureaucracy is causing me, or at least forcing me to endure, physical pain. Disappointingly, there really is not anything I can do at the moment. I am patiently awaiting the next dose, but I am frustrated that I am missing a dose tonight, and that I have no idea when I will receive the medication. My body screws up enough on its own, and I really do not need my medical team, including the drug company, screwing up as well. Plus it would be nice to feel like they care about me and want to reduce my pain and disease activity. I know they are just a company, but if you ask me even companies could and should show some compassion.

Me pretending like I know what I'm doing
      I want to learn to give myself injections. My mother is a pharmacist at a local university, and has experience giving shots to patients, so she has always done it for me in the past with my methotrexate and with my Enbrel. Being a senior, I need to be prepared to give myself the medication when I go off to college, and I want the control that comes with giving myself a shot. It isn't even a big deal; the needle is small and does not go very deep into my skin, and I consider myself to be a bit insane but also very capable.

     But when I attempted to inject myself last week, I ended up just staring at the needle, which I was holding a couple of inches away from my thigh, for twenty minutes before giving in and asking my mother to do it. I was not sure how hard or fast to stick the needle in, and there was a lot of pressure, given that Orencia is a $24,000 a year medication and we only had a single dose in the house. There really was not any room to mess up, and I depend heavily on a margin of error.

An over-hydrated orange that I injected 
     My mother brought home a syringe and an orange for me to practice injecting myself. Apparently, my skin is comparable to the peel and content of an orange, which is kind of dehumanizing but also probably pretty accurate, because she knows what she is doing. I stuck the orange a lot, and I must admit that I enjoyed the consequence-free and painless injections. I could try doing it quickly and harshly, and I could try doing it in a relaxed manner and slowly without having to worry about valuable medications or my own skin. My family joked about how good my younger sister would be at this type of thing, which I have to admit is completely true. Every skill I lack she excels in. It works out quite nicely - maybe I will make her give me my Orencia sometime just to see what happens. I trust her more than I trust myself, plus she isn't the type of person who would freak out or anything, and I definitely am. Hopefully by the time my medication is shipped to me I will feel confident about poking myself. For all I know, that could be forever, considering the incompetence of our modern healthcare system. Until then, I will just have to keep stabbing oranges.

      I really do not mind needles or shots very much. Once or twice a week, I receive a shot in each of my arms at my allergist's clinic. Blood draws do not freak me out. I barely flinch when I receive my vaccines. It is barely painful, and the pain I am already feeling masks the needle for the most part. But for some reason, the thought of getting a shot in my own house is deeply disturbing to me. My home seems like the only place that is free of all of the medicine and procedures and poking. I need it to be a sanctuary, and I wish it could stay that way. Getting shots in my house makes me feel like there is no separation between my life at hospitals and doctor's offices and my personal life, and that is not a feeling I enjoy. Before my first methotrexate injection, my mom and I agreed that we would never bring needles/shots into my room. My room is and always has been a needle-free zone. In college next year, I will probably do my shots in the bathroom or in the hallway rather than in my room. I think it is okay, and possibly even healthy, to keep a safe space, and I intend on doing so. As for oranges? I'll stab them anywhere.