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Wednesday, November 19, 2014

What Does an Information Literacy Coordinator Do?

As I've mentioned previously, I started my position as Information Literacy Coordinator at CSU Channel Islands on July 1 of this year (2014). My libraryfolk have a general idea of what my position entails, but I'm pretty sure my friends and family just nod their heads and smile and have no earthly clue what I do. So, here's a post about what exactly it is that I do all day.

Information Literacy

First, let me start with a brief statement about Information Literacy, since that. Is a huge part of my job. What is it? It's the set of skills and critical thinking applied to a person's need for information. So, the recognition that one needs information to solve a problem or question; determining the best place to find that information; critically reviewing the information and its source for relevance, validity and reliability; deciding on the best way to incorporate that information into decision-making...all of these fall into the realm of information literacy. Generally in higher ed, the librarians on a campus engage in information literacy instruction (or just 'library instruction') to help train students in these skills, particularly as it relates to their particular assignment in a class, and more broadly as it relates to their academic discipline. So we teach students about critically reviewing information, choosing databases, publication cycles, different types of publications and their target audiences.

We also teach students research skills, such as developing keywords for their topic, researching and reviewing relevant information, and refining their topics and searches as they go through the iterative research process. We teach them how to navigate the often confusing and unintuitive interfaces of various research databases. We teach our students that research is a process, one that comes with various twists and turns, and that the deeper they get into the research process, the more likely it is that they may refine or change their research questions. We teach class sessions, some of us teach semester-long classes, we lead workshops for students, we lead workshops for faculty interested in targeting information literacy in their syllabi and assignments.

Here at CSUCI, information literacy is actually one of our general education outcomes, which means that faculty teaching GenEd courses *must* integrate information literacy components into their courses. What this means for me in my role is that there is great support University-wide for our information literacy efforts and outreach.

The nuts and bolts of my work as InfoLit Coordinator in my first semester has largely been getting my feet wet in teaching information literacy sessions. When I am assigned a session, I contact the faculty member to set up a meeting to discuss their assignment, and what they want students to get out of our session. (This doubles as an opportunity to get some face-to-face time with faculty and build relationships. more on that in a minute.) From that discussion and the faculty member's assignment, I draft an outline for the session, and send it to the faculty member to make sure we are on the same page. Then I teach the session, and those range from 45 minutes to 90 minutes, depending on the class.

Sometime between next week and next semester, I'll also be the one assigning session requests to librarians. All form requests for requesting information literacy sessions will come to my email inbox, and I'll distribute them around to whomever is available. I've got access to everyone's Outlook calendars, access to classroom scheduling, and access to the Excel log where we keep track of info lit sessions by class, library instructor, class instructor, time to prepare, length of session, and number of students. Having seen my Chair, Debi, do this effectively and in an orderly fashion all semester, I'm ready to take the reins.

Another part of my infolit job is outreach to faculty. I've spent a lot of time this semester inviting faculty out for a coffee, stopping by offices to introduce myself, and generally making a benign nuisance of myself to get to know as many faculty across as many disciplines as possible. I'm starting to understand what faculty want most from our information literacy program, and areas that we might be able to grow into.

I do outreach to other campus offices. We are currently hiring a director for our Writing and Multiliteracy Center, and I imagine I'll be involved in partnerships and programming with that entity. I've spoken with our director of disability services; as a graduate student who struggled with an acquired disability, I have a particular passion for making connections with that office and their students to help them be as successful as possible. I'm building a great relationship with our director of Teaching and Learning Innovation, who offers resources to train faculty to deliver blended (a combination of online and in-person) learning. I've chatted with our director of Academic Technology, English faculty, Business faculty, Math faculty, Econ faculty, Education faculty, Spanish faculty...the list goes on. In every case, I've been met with enthusiasm and open-mindedness. In most cases, I've been able to either get them to schedule an information literacy session, or we've discussed partnering for other things. An example: a meeting with a member of the Spanish faculty has turned into a possible spring term plagiarism workshop for the Spanish department students and a possible initiative to involve gringa faculty in some Spanish language learning. (We are designated as a Hispanic-Serving Institution, and 40% of our students are Hispanic.)

Yet another aspect of my work is outreach to students. Students I've taught in my information literacy sessions all get my contact information, and I exhort them to please contact myself or the reference desk if they come across any stumbling blocks or want guidance as they navigate through various resources. This means I see a steady stream of students for research consults, where we take the time to discuss their research assignment in-depth, and we craft a strategy for their research together. I've found our students to be enthusiastic, and having just a little bit of direction or support makes them much more confident in their research. I've started some notes about what kinds of workshops our students might benefit from, and hope to pilot a few of those in the coming years.

I also work the reference desk about 5 hours per week, where I (wo)man the desk, and answer questions of all sorts - directional, research, printing, and whatever else comes up.

Service
 
Because I'm in a tenure-track Assistant Librarian position, I have  service responsibilities as well. In the University setting, "service" usually refers to serving on various department and campus committees and serving the community in a way related to your position.

In terms of service, my plate looks a little weird for my first year on the job. I'm currently a member of the Academic Senate Executive team. I was interested in seeing how the campus sausage and Senate agendas were made, and not many folks volunteered. We meet about once every two to three weeks during the semester, and review items for the upcoming Academic Senate meeting, respond to faculty concerns by serving as a clearinghouse for questions and other issues, and sometimes we get to see announcements or other information items before the general university faculty. Generally, we route concerns to the proper authority or committee. Occasionally we are asked to review system or campus issues.

Due to the serendipity of starting the semester relatively uncommitted compared to most of the other members, I am also co-chairing the Faculty Affairs committee with a veteran faculty member. This committee reviews (and creates, as necessary) issues and policies impacting the faculty. A few of the things that crossed our plate (though some are still there, much like broccoli) this semester included developing a policy on student rating of faculty instruction, discussing a nepotism policy, reviewing General Personnel Standards, and making a recommendation on requirements for online courses. It's intriguing to see how everything hangs together, and to see how the work impacts the faculty at large. Many of the issues that come to the Faculty Affairs Committee are sent by the Academic Senate Executive team.

Both of those positions are odd for a first-year faculty member, since a lot of campus knowledge and historical context is important for both. I became involved because I was interested and because few others could clear their schedules to do so. Both appointments end in May 2015, and in August I will most likely become a committee member on (an)other committee(s), such as curriculum.

I've not yet been involved in local community service, since I've spent my first semester getting acclimated to campus responsibilities and recovering from some health issues, but I am excited to start exploring local volunteer opportunities in the spring.

Research

Research is also a requirement of tenure-track faculty. For those not familiar, in the traditional sense this usually means that you conduct some sort of study, write it up in official academic-sounding language, and either try to get that paper published in an academic journal that other scholars in your field read, or present the paper at a professional conference. Here at CI this commitment isn't just called "research," but "research, scholarship, and creative activities." So, for English faculty, having a novel published may count as a creative activity under the research umbrella; for computer science faculty, developing a successful new program may count for this requirement. We are encouraged to be creative,and to be able to articulate how it furthers knowledge in our subject areas. CI is also not shy about the fact that our community places a great deal of value on interdisciplinary work, and collaborations with faculty in other disciplines is highly encouraged.

Research Project #1
Those of you who know me know that I love school, so papers tend to be my strength. I like to connect my research to my librarianship work, so I have a few research projects in the pipeline right now. In the spring, a faculty member in Communication and I are going to conduct a study comparing two classes she will be teaching (on the same subject). One class will get a traditional face-to-face library session, the other class will receive online multimedia training and an "Ask-the-Librarian" discussion board. Then we'll compare the learning outcomes of both classes to see if there is any difference in how students exhibit information literacy learning outcomes. Why this research? (This question is important--my time is valuable, and I want my research to be important to my work.) We want to identify whether or not online modes of information literacy instruction are as effective as in-person. If they are, this may be an option we can add as a supplement to the work we already do for faculty, and it may be an option if we have to scale our operations to a larger student body in the future.

Research Project #2
Another research project involving a bunch (a cardigan?) of librarians as well as a collaborative partner in Florida will measure our students on a library anxiety scale, to see if this phenomenon, which tends to be negatively correlated with critical thinking and information literacy, exists in our student body. At other universities, the scale has shown some serious disparities between students of different races. Why this research? If we find that CI students do suffer from library anxiety, we can target interventions to new and existing students in at-risk populations to help them overcome it. That would hopefully mean better student use of library resources, our students becoming better critical thinkers, and ultimately a mor gratifying path to graduation for our students.

Research Project #3
This project has actually been in-progress for nearly a year--my dissertation to complete the EdD program. Currently, academic librarians as a profession have a very good idea of what leadership skills and qualities are necessary to be a good library director. What we do not know is where academic librarians develop those leadership skills and qualities before they become directors. This project does that sort of career-path analysis on academic library directors at master's-granting colleges and universities. Why? Well, if a librarian wants to become a director some day, it would be nice if they had a map of what sort of work is most likely to best prepare them for the role. In addition, you can hardly walk three steps without tripping over a leadership institute nowadays. This research could actually inform those institutes as to where their applicants are most likely to have skill gaps, allowing them to better target both their audience and training opportunities.

I'm in the death throes of finishing this up; my dissertation advisor currently has a revised Chapter 4 (the data analysis) and is reviewing it. The dissertation will only go through Chapter 5, so I can see the finish line. I'm hoping to have the whole thing done, dusted, and degreed with a defense sometime in February, and to graduate and be Doctor Harris-Keith in May.

Research Project #4

This project does exactly the same thing as Project #3, but it collects data from academic library directors at baccalaureate-granting institutions instead of the master's level schools. Why? Well, there are over 800 baccalaureate-only colleges. That's a lot of academic library directors. It would be useful to know if the leadership development opportunities along their career paths mirrored directors at different institutions, or if they differ in some important way. Plus all of the reasons given for #3.

The Nutshell

In a nutshell (albeit a large one), that is my job. I love it. I enjoy teaching enormously, and I get jazzed at seeing the light bulbs go off in a class when students really start to understand things. I love helping a student on the edge of a breakdown find that they knew what to do all along, they just needed a wee bit of guidance. I love working with faculty, and seeing other grown folks nerd out about their love for their subject area, the way I do about librarianship. I get a kick out of finding intersections between my work and ways to improve teaching and learning in other disciplines. I enjoy reading journal articles by others researching in librarianship, and hearing about what my colleagues at CI and around the world are doing. There are always new ways to present old information, better teaching practices to test out, and new sparks of inspiration.


Most of all, I love that I get to be a part of a student's college experience, hopefully in a way that empowers them and helps them toward graduation. I had the very good fortune to attend a college where the faculty were highly invested in helping us succeed and helping us find our passions, and I try to do my best to pass along that personal helping hand to each generation coming through college. I have a lot of questions about life, but wondering what sort of work I should do is not one of them.











What Does an Information Literacy Coordinator Do?

As I've mentioned previously, I started my position as Information Literacy Coordinator at CSU Channel Islands on July 1 of this year (2014). My libraryfolk have a general idea of what my position entails, but I'm pretty sure my friends and family just nod their heads and smile and have no earthly clue what I do. So, here's a post about what exactly it is that I do all day.

Information Literacy

First, let me start with a brief statement about Information Literacy, since that. Is a huge part of my job. What is it? It's the set of skills and critical thinking applied to a person's need for information. So, the recognition that one needs information to solve a problem or question; determining the best place to find that information; critically reviewing the information and its source for relevance, validity and reliability; deciding on the best way to incorporate that information into decision-making...all of these fall into the realm of information literacy. Generally in higher ed, the librarians on a campus engage in information literacy instruction (or just 'library instruction') to help train students in these skills, particularly as it relates to their particular assignment in a class, and more broadly as it relates to their academic discipline. So we teach students about critically reviewing information, choosing databases, publication cycles, different types of publications and their target audiences.

We also teach students research skills, such as developing keywords for their topic, researching and reviewing relevant information, and refining their topics and searches as they go through the iterative research process. We teach them how to navigate the often confusing and unintuitive interfaces of various research databases. We teach our students that research is a process, one that comes with various twists and turns, and that the deeper they get into the research process, the more likely it is that they may refine or change their research questions. We teach class sessions, some of us teach semester-long classes, we lead workshops for students, we lead workshops for faculty interested in targeting information literacy in their syllabi and assignments.

Here at CSUCI, information literacy is actually one of our general education outcomes, which means that faculty teaching GenEd courses *must* integrate information literacy components into their courses. What this means for me in my role is that there is great support University-wide for our information literacy efforts and outreach.

The nuts and bolts of my work as InfoLit Coordinator in my first semester has largely been getting my feet wet in teaching information literacy sessions. When I am assigned a session, I contact the faculty member to set up a meeting to discuss their assignment, and what they want students to get out of our session. (This doubles as an opportunity to get some face-to-face time with faculty and build relationships. more on that in a minute.) From that discussion and the faculty member's assignment, I draft an outline for the session, and send it to the faculty member to make sure we are on the same page. Then I teach the session, and those range from 45 minutes to 90 minutes, depending on the class.

Sometime between next week and next semester, I'll also be the one assigning session requests to librarians. All form requests for requesting information literacy sessions will come to my email inbox, and I'll distribute them around to whomever is available. I've got access to everyone's Outlook calendars, access to classroom scheduling, and access to the Excel log where we keep track of info lit sessions by class, library instructor, class instructor, time to prepare, length of session, and number of students. Having seen my Chair, Debi, do this effectively and in an orderly fashion all semester, I'm ready to take the reins.

Another part of my infolit job is outreach to faculty. I've spent a lot of time this semester inviting faculty out for a coffee, stopping by offices to introduce myself, and generally making a benign nuisance of myself to get to know as many faculty across as many disciplines as possible. I'm starting to understand what faculty want most from our information literacy program, and areas that we might be able to grow into.

I do outreach to other campus offices. We are currently hiring a director for our Writing and Multiliteracy Center, and I imagine I'll be involved in partnerships and programming with that entity. I've spoken with our director of disability services; as a graduate student who struggled with an acquired disability, I have a particular passion for making connections with that office and their students to help them be as successful as possible. I'm building a great relationship with our director of Teaching and Learning Innovation, who offers resources to train faculty to deliver blended (a combination of online and in-person) learning. I've chatted with our director of Academic Technology, English faculty, Business faculty, Math faculty, Econ faculty, Education faculty, Spanish faculty...the list goes on. In every case, I've been met with enthusiasm and open-mindedness. In most cases, I've been able to either get them to schedule an information literacy session, or we've discussed partnering for other things. An example: a meeting with a member of the Spanish faculty has turned into a possible spring term plagiarism workshop for the Spanish department students and a possible initiative to involve gringa faculty in some Spanish language learning. (We are designated as a Hispanic-Serving Institution, and 40% of our students are Hispanic.)

Yet another aspect of my work is outreach to students. Students I've taught in my information literacy sessions all get my contact information, and I exhort them to please contact myself or the reference desk if they come across any stumbling blocks or want guidance as they navigate through various resources. This means I see a steady stream of students for research consults, where we take the time to discuss their research assignment in-depth, and we craft a strategy for their research together. I've found our students to be enthusiastic, and having just a little bit of direction or support makes them much more confident in their research. I've started some notes about what kinds of workshops our students might benefit from, and hope to pilot a few of those in the coming years.

I also work the reference desk about 5 hours per week, where I (wo)man the desk, and answer questions of all sorts - directional, research, printing, and whatever else comes up.

Service
 
Because I'm in a tenure-track Assistant Librarian position, I have  service responsibilities as well. In the University setting, "service" usually refers to serving on various department and campus committees and serving the community in a way related to your position.

In terms of service, my plate looks a little weird for my first year on the job. I'm currently a member of the Academic Senate Executive team. I was interested in seeing how the campus sausage and Senate agendas were made, and not many folks volunteered. We meet about once every two to three weeks during the semester, and review items for the upcoming Academic Senate meeting, respond to faculty concerns by serving as a clearinghouse for questions and other issues, and sometimes we get to see announcements or other information items before the general university faculty. Generally, we route concerns to the proper authority or committee. Occasionally we are asked to review system or campus issues.

Due to the serendipity of starting the semester relatively uncommitted compared to most of the other members, I am also co-chairing the Faculty Affairs committee with a veteran faculty member. This committee reviews (and creates, as necessary) issues and policies impacting the faculty. A few of the things that crossed our plate (though some are still there, much like broccoli) this semester included developing a policy on student rating of faculty instruction, discussing a nepotism policy, reviewing General Personnel Standards, and making a recommendation on requirements for online courses. It's intriguing to see how everything hangs together, and to see how the work impacts the faculty at large. Many of the issues that come to the Faculty Affairs Committee are sent by the Academic Senate Executive team.

Both of those positions are odd for a first-year faculty member, since a lot of campus knowledge and historical context is important for both. I became involved because I was interested and because few others could clear their schedules to do so. Both appointments end in May 2015, and in August I will most likely become a committee member on (an)other committee(s), such as curriculum.

I've not yet been involved in local community service, since I've spent my first semester getting acclimated to campus responsibilities and recovering from some health issues, but I am excited to start exploring local volunteer opportunities in the spring.

Research

Research is also a requirement of tenure-track faculty. For those not familiar, in the traditional sense this usually means that you conduct some sort of study, write it up in official academic-sounding language, and either try to get that paper published in an academic journal that other scholars in your field read, or present the paper at a professional conference. Here at CI this commitment isn't just called "research," but "research, scholarship, and creative activities." So, for English faculty, having a novel published may count as a creative activity under the research umbrella; for computer science faculty, developing a successful new program may count for this requirement. We are encouraged to be creative,and to be able to articulate how it furthers knowledge in our subject areas. CI is also not shy about the fact that our community places a great deal of value on interdisciplinary work, and collaborations with faculty in other disciplines is highly encouraged.

Research Project #1
Those of you who know me know that I love school, so papers tend to be my strength. I like to connect my research to my librarianship work, so I have a few research projects in the pipeline right now. In the spring, a faculty member in Communication and I are going to conduct a study comparing two classes she will be teaching (on the same subject). One class will get a traditional face-to-face library session, the other class will receive online multimedia training and an "Ask-the-Librarian" discussion board. Then we'll compare the learning outcomes of both classes to see if there is any difference in how students exhibit information literacy learning outcomes. Why this research? (This question is important--my time is valuable, and I want my research to be important to my work.) We want to identify whether or not online modes of information literacy instruction are as effective as in-person. If they are, this may be an option we can add as a supplement to the work we already do for faculty, and it may be an option if we have to scale our operations to a larger student body in the future.

Research Project #2
Another research project involving a bunch (a cardigan?) of librarians as well as a collaborative partner in Florida will measure our students on a library anxiety scale, to see if this phenomenon, which tends to be negatively correlated with critical thinking and information literacy, exists in our student body. At other universities, the scale has shown some serious disparities between students of different races. Why this research? If we find that CI students do suffer from library anxiety, we can target interventions to new and existing students in at-risk populations to help them overcome it. That would hopefully mean better student use of library resources, our students becoming better critical thinkers, and ultimately a mor gratifying path to graduation for our students.

Research Project #3
This project has actually been in-progress for nearly a year--my dissertation to complete the EdD program. Currently, academic librarians as a profession have a very good idea of what leadership skills and qualities are necessary to be a good library director. What we do not know is where academic librarians develop those leadership skills and qualities before they become directors. This project does that sort of career-path analysis on academic library directors at master's-granting colleges and universities. Why? Well, if a librarian wants to become a director some day, it would be nice if they had a map of what sort of work is most likely to best prepare them for the role. In addition, you can hardly walk three steps without tripping over a leadership institute nowadays. This research could actually inform those institutes as to where their applicants are most likely to have skill gaps, allowing them to better target both their audience and training opportunities.

I'm in the death throes of finishing this up; my dissertation advisor currently has a revised Chapter 4 (the data analysis) and is reviewing it. The dissertation will only go through Chapter 5, so I can see the finish line. I'm hoping to have the whole thing done, dusted, and degreed with a defense sometime in February, and to graduate and be Doctor Harris-Keith in May.

Research Project #4

This project does exactly the same thing as Project #3, but it collects data from academic library directors at baccalaureate-granting institutions instead of the master's level schools. Why? Well, there are over 800 baccalaureate-only colleges. That's a lot of academic library directors. It would be useful to know if the leadership development opportunities along their career paths mirrored directors at different institutions, or if they differ in some important way. Plus all of the reasons given for #3.

The Nutshell

In a nutshell (albeit a large one), that is my job. I love it. I enjoy teaching enormously, and I get jazzed at seeing the light bulbs go off in a class when students really start to understand things. I love helping a student on the edge of a breakdown find that they knew what to do all along, they just needed a wee bit of guidance. I love working with faculty, and seeing other grown folks nerd out about their love for their subject area, the way I do about librarianship. I get a kick out of finding intersections between my work and ways to improve teaching and learning in other disciplines. I enjoy reading journal articles by others researching in librarianship, and hearing about what my colleagues at CI and around the world are doing. There are always new ways to present old information, better teaching practices to test out, and new sparks of inspiration.

Most of all, I love that I get to be a part of a student's college experience, hopefully in a way that empowers them and helps them toward graduation. I had the very good fortune to attend a college where the faculty were highly invested in helping us succeed and helping us find our passions, and I try to do my best to pass along that personal helping hand to each generation coming through college. I have a lot of questions about life, but wondering what sort of work I should do is not one of them.











Monday, November 17, 2014

An Aside on Self-Advocacy (or, Colleen Plays Amateur Medical Librarian)


This post is my story, and my charge to you to be your own advocate, particularly when it comes to your medical care. Why am I posting this to my librarianship blog? I debated it. But it impacts my worklife as a librarian, it impacts my colleagues, and it is relevant to my passion for people to educate themselves, to become critical consumers of information.

The Mayo Clinic does a decent job of explaining the disease, and I'm going to lift most of their description and use it here. Rheumatoid arthritis is a chronic inflammatory disease. The arthritis you have in your knee from running, or shoulder from pitching, is more likely osteoarthritis, and it comes from wear and tear of the actual joint. Rheumatoid, on the other hand, affects the lining of the joints, and causes painful swelling, bone erosion, and joint deformity.

Rheumatoid arthritis is an autoimmune disease - effectively caused by your body mistaking itself for an invader, and attacking your own fine tissues with your own immune system. You can think of autoimmune disorders as the guard dog that bites the master, instead of guarding the house. Except instead of a single bite, it's a constant gnawing. That's close. And RA doesn't limit itself to the linings of your joints--the inflammation can also affect other organs of the body. In my case, a bad flare and jump in inflammation generally lands me in the hospital with a severely inflamed colon. Good times.

I've written about my experience with a chronic inflammatory illness before (here and here). With the move to California, I've had to recruit a whole new team of doctors. Those of you who follow me on social media have likely noticed I'm coming off a bad bunch of weeks of feeling awful, being in incredible pain, and far too many 6pm bedtimes to be normal for my age.

The new California rheumatologist asked me to forego taking all of my medications so she could get my baseline measurements. I was skeptical and a bit afraid; it had taken my Tennessee team of doctors nearly three years to come up with a combination that had me functional, and to go from three years of medication to cold turkey nothing seemed like a recipe for a terrible few weeks. I was afraid, but I didn't say anything. Getting baseline measurements sounded like a common-sense thing to do, and surely, she went to medical school and knew better than I did the pros and cons of stopping four years of treatment regimen. I stopped the prednisone as ordered, and went off the weekly Enbrel injections.

By my second visit four weeks later, I had spent three weeks in excruciating pain. I was to see my primary care doc right before my rheumatologist. She (primary care) noted that my bloodwork showed high inflammatory markers and that my blood pressure was through the roof. She prescribed meloxicam (and anti-inflammatory) and gabapentin (a drug helpful for fibromyalgia pain), and said my rheumatologist might change those based on her assessment of me. Five minutes later, in a different room in the same practice, the rheumatologist looked at my bloodwork and said it was fine, that I just needed to lose weight. I told her that the pain was so bad that I could barely sleep, and that when I did sleep, the pain seeped through--I dreamed of having my hands cut off, or falling down long flights of stairs. She told me there was no joint degradation in my x-rays. She told me that I needed a psychiatrist. She told me I probably had fibromyalgia, and that there was nothing she could do for me. Then she walked out. I was floored. I was devastated. I was slightly hysterical.

Worst of all, I was silent.

I cried on my husband. I went home feeling crushed, and angry. I knew there were medicines that are known to help with fibro. I've been heavy all my life, but I also used to be somewhat fit, and able to do active things. I had researched fibromyalgia and knew it didn't quite fit with my symptoms. My stomach churned, I spent a few days feeling lost and abandoned by medical professionals and doomed to a very circumscribed life of waking in pain, working in pain, and crawling to bed in pain. Finally, after telling the story to friends and family, really listening to it and internalizing how I'd been treated, I got angry. This at last gave me the energy I needed to do something about things.

I managed to get in to see my primary care doctor the next week. I told her that I found the other doctor's treatment unacceptable and asked for a new referral to a doctor who had decent patient reviews. She listened. She was kind, and agreed it must have been an awful experience, and wrote the new referral immediately.

The two weeks it took for the HMO to process that referral was a nightmare. When I called the new rheumatologist's office, I could not make an appointment because they hadn't received my records from the primary care doctor's office. A simple thing. A small thing.

The last thing.

Cue mental breakdown. This was where I broke. I wanted to just curl up in a corner and die, if it was going to be such a huge inconvenience for doctors to treat me. My husband, my biggest advocate, got in the car, went to the office and had them fax the documents while he watched. he brought home the fax delivery confirmation page. Then he made the appointment I needed. He is also the one who packed me into the car and took me to said appointment.

[I was completely spent. After so much time in pain, and having that be all I could see into the future broke something in me. I know how very lucky I am to have him as a partner through all of this, and I send regular prayers up for folks who have to deal with this sort of thing on their own. It's an enormous burden and responsibility, this thing of 'being well,' that everyone else seems to be able to do without all this work.]

The new-new rheumatologist saw me, and ordered new bloodwork and cervical spine xrays. Because prednisone had helped my inflammation in the past, he moved me back to 10 mg a day for one week, then to 7.5 for the week after that. Since I had been fasting, my bloodwork was done that day (Halloween), while I was in full crisis. He asked me to tell him about the progression of the disorder all the way from the beginning. He listened.

I started the prednisone Saturday. Monday, my head was clear, the pain was bearable, and I functioned for a very full day at work for this first time in what felt like forever.

I saw the new-new rheumdoc again two weeks later. He was floored at how high my inflammation markers were. My sed rate was in the low 50s (0-29 is normal range), my CRP was over 8, and my white blood cell count was extremely high. The doctor said he couldn't believe I had made it into the office, I must have been in so much pain. He said the malar rash was also a marker. He said I clearly had some sort of inflammatory autoimmune disease, most likely RA, from my symptoms.

I kid you not, I high-fived my husband at the test numbers.

"HA!" I yelled, in the tiny room. "I AM SICK!" And then, with a smile, "So you're saying I'm not just sick, but super-sick, right?"

[Cheering for being sick may not be something everyone can relate to. However, after multiple doctor visits, multiple courses of some very nasty prescription medications with side effects only slightly less horrible than the symptoms, and being told at every turn that nothing is wrong, having a doctor point to evidence of illness is vindicating. It feels a little bit like victory.]

It didn't matter that *I* knew I was sick. I needed a doctor to believe me, to believe I didn't feel good, to believe there was something terribly wrong with my insides. I needed the damn tests to believe me, to give me something on paper to prove I was not crazy, or faking. To acknowledge the pain I was in and help me to do something about it. He diagnosed my disorder as seronegative Rheumatoid Arthitis or seronegative spondyloarthropathy, which is sort of "general joint disease."

My ANA marker, a popular marker for quickly diagnosing diseases like RA and lupus, is still negative, though that can change at any point, according to studies I've read and the doctor, and is why the diagnosis states "seronegative" right now. Relying on only the ANA, you might see me in terrible pain, swelled up like a sausage, and say to my face, "There's nothing wrong with you." But that would make you a terrible doctor, and, in my opinion, a terrible person.

This is a long way around of reminding you (and myself, should I need it later) that only you live in your skin. You know when something is wrong. Your doctor should be treating you as-a-person, not just you-the-test-results (though tests can be helpful). Do research. Contact a librarian if you have to, we love to help and have access to some nifty medical research resources like MedLine and CINAHL. It is difficult to be your own advocate, but you must. It may be difficult to maintain social relationships when you hurt, but cultivate allies who are willing to help you advocate. Join a support group; join a Facebook page or Friendfeed room. Find a place where you can be fully open and honest with yourself and others about your illness, and the myriad annoyances, altered goals and new-normals that come along with it. Reach out and find someone to talk to. You may feel horribly isolated and alone, but we are out here, the other folks feeling isolated and alone while navigating this hard road.

The much shorter TL;DR version of this post is: don't let an uncaring doctor, overworked medical office staff, your test results, or anything else prevent you from getting the care and treatment you need. You deserve to live a full life, and to enjoy that living. Be your own advocate, and find a partner willing to advocate for/with you.



An Aside on Self-Advocacy (or, Colleen Plays Amateur Medical Librarian)


This post is my story, and my charge to you to be your own advocate, particularly when it comes to your medical care. Why am I posting this to my librarianship blog? I debated it. But it impacts my worklife as a librarian, it impacts my colleagues, and it is relevant to my passion for people to educate themselves, to become critical consumers of information.

The Mayo Clinic does a decent job of explaining the disease, and I'm going to lift most of their description and use it here. Rheumatoid arthritis is a chronic inflammatory disease. The arthritis you have in your knee from running, or shoulder from pitching, is more likely osteoarthritis, and it comes from wear and tear of the actual joint. Rheumatoid, on the other hand, affects the lining of the joints, and causes painful swelling, bone erosion, and joint deformity.

Rheumatoid arthritis is an autoimmune disease - effectively caused by your body mistaking itself for an invader, and attacking your own fine tissues with your own immune system. You can think of autoimmune disorders as the guard dog that bites the master, instead of guarding the house. Except instead of a single bite, it's a constant gnawing. That's close. And RA doesn't limit itself to the linings of your joints--the inflammation can also affect other organs of the body. In my case, a bad flare and jump in inflammation generally lands me in the hospital with a severely inflamed colon. Good times.

I've written about my experience with a chronic inflammatory illness before (here and here). With the move to California, I've had to recruit a whole new team of doctors. Those of you who follow me on social media have likely noticed I'm coming off a bad bunch of weeks of feeling awful, being in incredible pain, and far too many 6pm bedtimes to be normal for my age.

The new California rheumatologist asked me to forego taking all of my medications so she could get my baseline measurements. I was skeptical and a bit afraid; it had taken my Tennessee team of doctors nearly three years to come up with a combination that had me functional, and to go from three years of medication to cold turkey nothing seemed like a recipe for a terrible few weeks. I was afraid, but I didn't say anything. Getting baseline measurements sounded like a common-sense thing to do, and surely, she went to medical school and knew better than I did the pros and cons of stopping four years of treatment regimen. I stopped the prednisone as ordered, and went off the weekly Enbrel injections.

By my second visit four weeks later, I had spent three weeks in excruciating pain. I was to see my primary care doc right before my rheumatologist. She (primary care) noted that my bloodwork showed high inflammatory markers and that my blood pressure was through the roof. She prescribed meloxicam (and anti-inflammatory) and gabapentin (a drug helpful for fibromyalgia pain), and said my rheumatologist might change those based on her assessment of me. Five minutes later, in a different room in the same practice, the rheumatologist looked at my bloodwork and said it was fine, that I just needed to lose weight. I told her that the pain was so bad that I could barely sleep, and that when I did sleep, the pain seeped through--I dreamed of having my hands cut off, or falling down long flights of stairs. She told me there was no joint degradation in my x-rays. She told me that I needed a psychiatrist. She told me I probably had fibromyalgia, and that there was nothing she could do for me. Then she walked out. I was floored. I was devastated. I was slightly hysterical.

Worst of all, I was silent.

I cried on my husband. I went home feeling crushed, and angry. I knew there were medicines that are known to help with fibro. I've been heavy all my life, but I also used to be somewhat fit, and able to do active things. I had researched fibromyalgia and knew it didn't quite fit with my symptoms. My stomach churned, I spent a few days feeling lost and abandoned by medical professionals and doomed to a very circumscribed life of waking in pain, working in pain, and crawling to bed in pain. Finally, after telling the story to friends and family, really listening to it and internalizing how I'd been treated, I got angry. This at last gave me the energy I needed to do something about things.

I managed to get in to see my primary care doctor the next week. I told her that I found the other doctor's treatment unacceptable and asked for a new referral to a doctor who had decent patient reviews. She listened. She was kind, and agreed it must have been an awful experience, and wrote the new referral immediately.

The two weeks it took for the HMO to process that referral was a nightmare. When I called the new rheumatologist's office, I could not make an appointment because they hadn't received my records from the primary care doctor's office. A simple thing. A small thing.

The last thing.

Cue mental breakdown. This was where I broke. I wanted to just curl up in a corner and die, if it was going to be such a huge inconvenience for doctors to treat me. My husband, my biggest advocate, got in the car, went to the office and had them fax the documents while he watched. he brought home the fax delivery confirmation page. Then he made the appointment I needed. He is also the one who packed me into the car and took me to said appointment.

[I was completely spent. After so much time in pain, and having that be all I could see into the future broke something in me. I know how very lucky I am to have him as a partner through all of this, and I send regular prayers up for folks who have to deal with this sort of thing on their own. It's an enormous burden and responsibility, this thing of 'being well,' that everyone else seems to be able to do without all this work.]

The new-new rheumatologist saw me, and ordered new bloodwork and cervical spine xrays. Because prednisone had helped my inflammation in the past, he moved me back to 10 mg a day for one week, then to 7.5 for the week after that. Since I had been fasting, my bloodwork was done that day (Halloween), while I was in full crisis. He asked me to tell him about the progression of the disorder all the way from the beginning. He listened.

I started the prednisone Saturday. Monday, my head was clear, the pain was bearable, and I functioned for a very full day at work for this first time in what felt like forever.

I saw the new-new rheumdoc again two weeks later. He was floored at how high my inflammation markers were. My sed rate was in the low 50s (0-29 is normal range), my CRP was over 8, and my white blood cell count was extremely high. The doctor said he couldn't believe I had made it into the office, I must have been in so much pain. He said the malar rash was also a marker. He said I clearly had some sort of inflammatory autoimmune disease, most likely RA, from my symptoms.

I kid you not, I high-fived my husband at the test numbers.

"HA!" I yelled, in the tiny room. "I AM SICK!" And then, with a smile, "So you're saying I'm not just sick, but super-sick, right?"

[Cheering for being sick may not be something everyone can relate to. However, after multiple doctor visits, multiple courses of some very nasty prescription medications with side effects only slightly less horrible than the symptoms, and being told at every turn that nothing is wrong, having a doctor point to evidence of illness is vindicating. It feels a little bit like victory.]

It didn't matter that *I* knew I was sick. I needed a doctor to believe me, to believe I didn't feel good, to believe there was something terribly wrong with my insides. I needed the damn tests to believe me, to give me something on paper to prove I was not crazy, or faking. To acknowledge the pain I was in and help me to do something about it. He diagnosed my disorder as seronegative Rheumatoid Arthitis or seronegative spondyloarthropathy, which is sort of "general joint disease."

My ANA marker, a popular marker for quickly diagnosing diseases like RA and lupus, is still negative, though that can change at any point, according to studies I've read and the doctor, and is why the diagnosis states "seronegative" right now. Relying on only the ANA, you might see me in terrible pain, swelled up like a sausage, and say to my face, "There's nothing wrong with you." But that would make you a terrible doctor, and, in my opinion, a terrible person.

This is a long way around of reminding you (and myself, should I need it later) that only you live in your skin. You know when something is wrong. Your doctor should be treating you as-a-person, not just you-the-test-results (though tests can be helpful). Do research. Contact a librarian if you have to, we love to help and have access to some nifty medical research resources like MedLine and CINAHL. It is difficult to be your own advocate, but you must. It may be difficult to maintain social relationships when you hurt, but cultivate allies who are willing to help you advocate. Join a support group; join a Facebook page or Friendfeed room. Find a place where you can be fully open and honest with yourself and others about your illness, and the myriad annoyances, altered goals and new-normals that come along with it. Reach out and find someone to talk to. You may feel horribly isolated and alone, but we are out here, the other folks feeling isolated and alone while navigating this hard road.

The much shorter TL;DR version of this post is: don't let an uncaring doctor, overworked medical office staff, your test results, or anything else prevent you from getting the care and treatment you need. You deserve to live a full life, and to enjoy that living. Be your own advocate, and find a partner willing to advocate for/with you.



Friday, November 14, 2014

A Library Day in the Life: November 14, 2014


5:30am - Awoken from sleep study by technician. GRUMPY. Hair full of goop from electrodes.

6:00am - Picked up by husband, returned home.

6:30-7:10am - Showered, dressed, became some semblance of human.

7:15am-7:45am - Opened the library building with a walk around the floors, unlocking things.

7:45-7:55am - Conducted email triage.

7:57am - Emailed our Facilities liaison to ask for deodorizers in the urinals, on behalf of some grumpy menfolk.

8:00am-10:50am - Reference desk shift.

1 major research consult on the WonderBra vs the MiracleBra, the rest was all printing. Also completed IRB application #1, sent to research collaborator in COMM for review. Also typed and emailed minutes and action items from yesterday's Faculty Affairs committee meeting to committee members. Most productive reference desk shift ever.

10:50am - 11:35am - Peer review of teaching (sat in on a COMM/LIB 211 class)

11:40am-11:50am - I took my lunch salad out. With extreme prejudice. It did not taste like a burrito.

11:40am - Set up a meeting with our Director for Teaching & Learning Innovation for next week to put truth to quash some rumors.

11:52am - Wished I had a burrito.

11:55am - Emailed research collaborator for research project #2.

11:57 - Wished again for a burrito.

12:02 - Emailed IRB chair to confirm details about needed about Letter of Agreement.

12:20 - Finished draft of IRB application #2.

12:22pm - Emailed our own illustrious Matt Cook to talk about data repository possibilities.

1:17pm - Emailed the Provost some information to inform her letter of recommendation for my Immersion Program Track application.

1:32pm - Emailed all of the new tenure-track faculty (we're The 17) with a date and time for the first EndNote Web tutorial I'm offering, with promises of a Doodle poll to get good spring dates for those who cannot attend this one.

1:43pm - Emailed research consult on art therapy, children and violent episodes, and children's art for 9/11 for an ENG 478 student I saw in an info lit session last week

2:06pm - Emailed research consult on French Revolution images for an ENG 478 student I saw in an info lit session last week.

2:20pm - Marveled at my manic productivity, praised the power of prednisone, and decided to go ahead and record all of it for posterity as a day in the life post.

I'll be leaving at 3:00pm today, which is early compared to my 4/4:30pm departure most Fridays (my opening day - my weekday leaving time is usually 430/5pm). From now until I leave, I'll chip away at planning the ART 102 class I'm teaching next Tuesday night.

This was more of a paperwork/email/desk day than I usually have, and I missed getting outdoors for a breath of fresh air, but in terms of the to-do list, I'm pretty happy with it. After I leave I will be indulging in a giant vat of Mexican food with my husband, and some really terrible television that we have DVRed.

Things I did *not* get to today: write more on my article draft for Performance Measurement and Metrics, complete a research grant application, complete a full book proposal requested by my editor, complete my Immersion application essays. They'll have to wait until next week, since this weekend is dedicated to slogging through the last of Chapter 4 of the dissertation. (My Christmas gift to myself and my husband will be getting this monkey off my back. Do not come near me this weekend if you are burrito-less. I may bite.)

And this is a day in the life of the Information Literacy Coordinator at CSU Channel Islands. What does yours look like?

A Library Day in the Life: November 14, 2014


5:30am - Awoken from sleep study by technician. GRUMPY. Hair full of goop from electrodes.

6:00am - Picked up by husband, returned home.

6:30-7:10am - Showered, dressed, became some semblance of human.

7:15am-7:45am - Opened the library building with a walk around the floors, unlocking things.

7:45-7:55am - Conducted email triage.

7:57am - Emailed our Facilities liaison to ask for deodorizers in the urinals, on behalf of some grumpy menfolk.

8:00am-10:50am - Reference desk shift.

1 major research consult on the WonderBra vs the MiracleBra, the rest was all printing. Also completed IRB application #1, sent to research collaborator in COMM for review. Also typed and emailed minutes and action items from yesterday's Faculty Affairs committee meeting to committee members. Most productive reference desk shift ever.

10:50am - 11:35am - Peer review of teaching (sat in on a COMM/LIB 211 class)

11:40am-11:50am - I took my lunch salad out. With extreme prejudice. It did not taste like a burrito.

11:40am - Set up a meeting with our Director for Teaching & Learning Innovation for next week to put truth to quash some rumors.

11:52am - Wished I had a burrito.

11:55am - Emailed research collaborator for research project #2.

11:57 - Wished again for a burrito.

12:02 - Emailed IRB chair to confirm details about needed about Letter of Agreement.

12:20 - Finished draft of IRB application #2.

12:22pm - Emailed our own illustrious Matt Cook to talk about data repository possibilities.

1:17pm - Emailed the Provost some information to inform her letter of recommendation for my Immersion Program Track application.

1:32pm - Emailed all of the new tenure-track faculty (we're The 17) with a date and time for the first EndNote Web tutorial I'm offering, with promises of a Doodle poll to get good spring dates for those who cannot attend this one.

1:43pm - Emailed research consult on art therapy, children and violent episodes, and children's art for 9/11 for an ENG 478 student I saw in an info lit session last week

2:06pm - Emailed research consult on French Revolution images for an ENG 478 student I saw in an info lit session last week.

2:20pm - Marveled at my manic productivity, praised the power of prednisone, and decided to go ahead and record all of it for posterity as a day in the life post.

I'll be leaving at 3:00pm today, which is early compared to my 4/4:30pm departure most Fridays (my opening day - my weekday leaving time is usually 430/5pm). From now until I leave, I'll chip away at planning the ART 102 class I'm teaching next Tuesday night.

This was more of a paperwork/email/desk day than I usually have, and I missed getting outdoors for a breath of fresh air, but in terms of the to-do list, I'm pretty happy with it. After I leave I will be indulging in a giant vat of Mexican food with my husband, and some really terrible television that we have DVRed.

Things I did *not* get to today: write more on my article draft for Performance Measurement and Metrics, complete a research grant application, complete a full book proposal requested by my editor, complete my Immersion application essays. They'll have to wait until next week, since this weekend is dedicated to slogging through the last of Chapter 4 of the dissertation. (My Christmas gift to myself and my husband will be getting this monkey off my back. Do not come near me this weekend if you are burrito-less. I may bite.)

And this is a day in the life of the Information Literacy Coordinator at CSU Channel Islands. What does yours look like?