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.