Wednesday, January 9, 2013


After my Rheumiversary in August, November 8th served as the next most important date on my RA calendar. On November 8th, 2011, I seriously began RA treatment under the watchful gaze of a rheumatologist. As that date approached, arrived, and sped quickly away this year, I found myself falling further and further into what often feels like an endless pit. After a year of treatment, shouldn't I feel better? After a year of pumping all these injections and pills into my body, shouldn't my RA show some kind of response? 

I've spent the last three months lost in my own thoughts. I have slept, awoken, learned, traveled...I have lived in constant physical pain. While this is not unusual for me, the pain has become so much more than just a frustration. As I counted down to my one year treatment benchmark, my pain turned into a menace. It haunted all my social interactions, alienating me from almost everyone I value. It trailed behind me as I tried to enjoy my travels, and all the experiences and vacations I had the pleasure to embark upon in 2012. It kept me from doing the simplest things -  taking notes for school became a discouraging impossibility. Getting up to turn in my daily assignments felt like a monstrous, hopeless effort. Worst of all, I didn't have the positivity, the hope and the spirit to continue pushing forward. 

When I started this blog, and started my journey through RA, I insisted continuously that I would never let this disease define who I am. I declared that I would not let it beat me. 

It has. I haven't written a blog in three months because I am so ashamed to admit, to myself, to my readers, to my friends and loved ones, that I feel utterly and completely defeated by my illness. One day, struggling to work on an assignment for my philosophy course, I turned to DJ and cried, "I hate how my arthritis has taken over my whole life." He looked at me for a moment and said, "It IS your life."Nothing has ever been so torturously true. I missed graduation celebrations, birthdays, New Year's resolutions, and the one year anniversary of this blog. I have hidden my emotionally broken self away from the people and things that I care so much about, because I can't face them when I've let this disease beat me. 

I am happy to say that my pain is under (very, very tenuous) control with the help of massive joint injections, Vicodin, and a daily steroid. I am slightly hopeful that Orencia will come through where my Humira did not, and I will be able to face 2013 on steadier ground. Even with the pain mostly gone, though, I feel so overwhelmingly defeated that I can't pull myself out of this funk. 

Deciding on blog topics is not something that is usually very tricky for me. I can write my posts in the shower and have them completed before my hair dries. But this one...I have struggled for nearly a month, trying to tell myself that this is a useless subject, a boring story, and not really a very moving blog entry. But to be very honest with myself, the sorts of life changes for which chronic pain is responsible often include drastic and emotionally difficult changes in perspective and mood. In short, depression is a very valid and totally honest part of the coping process. My depression is part of my coping process, and this blog is, after all, about my coping process. 

Depression is a strange, rude beast. It creeps up without giving any notice of its arrival, and occupies both body and mind without any indications of its presence. One day in October, I woke up and realized that I hated what my life had become, hated my body and all its failures, hated my disease and my misfortune and a million other things. Since then, being alive feels like the biggest effort. Socializing makes me anxious and leaves me feeling more alone than ever. People, friends even, said things like, "At least it's not cancer," or "cheer up, it'll be better soon." I understand the sentiment, and I appreciate the support. I am, of course, so grateful that RA is all I have, and that I am in good health besides the one disease from which I have relatively recently begun to suffer. But I need some love, friends, and some compassion. Please don't tell me to cheer up. If I could, I certainly would, because lying in bed every day feeling hopeless and alone is absolutely the worst. Hopelessness, loneliness, pessimism - these are choking, stifling feelings. 

Every day is such an effort that I sometimes don't even get out of bed. My to-do list gets longer every minute, but my beautiful new 2013 planner (thanks Mom!) remains on my desk, still empty. I know I have appointments to make, paperwork to complete, and two important classes to finish before the February 20th deadline. My schoolwork remains unfinished. 

This is not an easy place to write from, and it's even more difficult to drag myself out of this cavernous negativity to get anything else done. I try. When I finally manage to haul myself out of bed every day, I will get dressed, prepare a meal, sit down, and do one thing. If one thing is all I've managed, I consider that a success. So far, handling my depression seems a lot like handling my chronic pain. Set easy goals. Accomplish them. Feel like I did something useful. Repeat. One step at a time, every day. 


  1. "Set easy goals. Accomplish them. Feel like I did something useful. Repeat. One step at a time, every day."

    That's *exactly* what I did to pull myself out of the depression that took over my life a few years ago.

    Thanks for sharing.

  2. Your honesty is brutal and so ironically full of life. Beautifully written; need to name it and face it in order to work with it. You are amazing and I love you so and hurt right along with you. Mom

  3. I'm about to hit my one year anniversary of my diagnosis, and it has been very hard. When I was first diagnosed, I felt so optimistic, strong and powerful. I set a goal that in one year I would be in remission and getting off the drugs. The truth has been very different. My latest rheumy appointment saddled me with more drugs and left me feeling so defeated.

    So, trust me when I say I understand where you're coming from. Even the depression part. I don't have great advice or anything...I'm just going through this now as well.

    I will say that you can and should grieve. Maybe you're like me and you didn't let yourself before and now that you're at the year anniversary, your RA is forcing you to acknowledge its in your life. For who knows how long. And that sucks. A lot. And deserves grief and anger and all of that.

    But please don't give up and let yourself succumb to depression. Enlist a friend or two that you can share with more often. Utilize your online support network. See a therapist. Do a distracting thing every day that will have a chance of taking your mind off the disease.

    I'm sorry for the long post, but I wanted to share Kris Carr's words as well. I've found them helpful.
    “When I was first diagnosed, my burning goal was remission. Anything else seemed like colossal failure. And even worse — my fault. Ten years later, I’m a master at my own advice. I. Accept. Me. Cancer and all. Does that mean that I’ve given up on my health? Of course not! Acceptance is different from quitting. It means that no matter what happens, you won’t abandon yourself in your time of need. And here’s the the part that contributes to your overall well being: Acceptance allows you to rest, renew and replenish — rather than stress over what isn’t going your way. You are your own angel, treat yourself as such. Stand by your own side as you try new things and spread your wings. Life doesn’t start when “this, that or the other thing” is resolved. Life is now. Don’t wait it away.“

    1. This is an amazing comment. I sat for a long time thinking about how to respond.

      Thank you first for your understanding, compassion and support. Like you, I didn't do much accepting and grieving in the first year of my diagnosis. It doesn't help that the pamphlets my first rheumatologist handed me said nothing of the hardships ahead in dealing with RA. Treatment sounded simple and easy - here are the drugs, they work pretty well, you'll be great soon! A year into my treatments, I'm able to admit to myself that there are so many forces at work here - mental anguish, physical pain, grief and sorrow, surprising and sometimes scary life changes...way more than I was prepared to handle when I began this journey.

      I found a therapist who specializes in grief, life changes, and especially living with chronic pain. I am very excited to start my work with her. Another change in my life sparked a lot more grief, as I addressed in my latest post, but also got the words flowing again. I find myself getting back into writing, thinking, being an active individual instead of passively locked in my own head.

      Thank you, again, for your heartfelt comment. I so appreciate it.