Friday, March 22, 2013

What the pamphlets didn't teach me

Some of you are probably familiar with the story of my diagnosis. The day I met with a rheumatologist, he sat with me in a cold, clinical waiting room and read to me from a selection of pamphlets with cheesy names like, "So You Have Rheumatoid Arthritis," and "Rheumatoid Arthritis: An Overview." The doctor presented this literature as if I were a kindergartener circled up for storytime - facing the cartoony pictures of people in pain towards me, he hovered over each word with his pen as he read out loud.

I still have those pamphlets somewhere, and I am often tempted to dig them out. Those little handouts with their idiotic drawings did absolutely zero to prepare me for what was to come. I expected to feel pain and stiffness in the mornings. I expected to work with my doctor to find a medication that would solve all my problems and let me live "a perfectly normal, active life," as one pamphlet cheerfully promised. What I did not expect was to live in constant pain for two years, watching my life crumble into pieces as I struggled just to get through a normal day. Nobody mentioned that I would need my boyfriend to lift me out of bed, walk me to the shower, dress me, and tie my shoes. That I might not be immediately "fixed" would have been nice to know.

Sunday, February 24, 2013

Backwards and Side to Side

I've spent hours every week trying to write a blog post. I have six partially-finished, wholly abandoned drafts sitting in my posts list. Somewhere along the way, my motivations and inspirations fell off the face of the earth, and try as I might, I can't seem to recover them.

Today my inspiration stems from my heavy, heavy heart. I witnessed the end of a very close friendship, with a person I admire and adore with everything I have (I will call him Friend). He was probably the first person to become a constant reader and vocal supporter of this blog, though I don't believe he is a follower any longer. He has never been anything less than an unwavering foundation through some of the worst of my struggles with this stupidly persistent disease.

I am in awe of the process of a decomposing friendship. All I can do, lately, is watch as my personal relationships crumble around me. I had some vague feeling of dread about this particular friendship, as if I were watching it burst into pieces but possessed absolutely no useful abilities for stopping the inevitable explosion. Explode it did, into a million childish, horribly intimate jabs at each other, a thousand terrible names and words and feelings.

Wednesday, January 9, 2013

Defeated

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. 

Tuesday, October 16, 2012

Guest Post: Healthline.com!

I am so honored to feature a guest post from one of the fabulous writers at Healthline. Healthline journalists have been featured on the Washington Times and Natural News websites, and I'm thrilled they've picked my little blog! Please welcome Valerie Johnston's factual take on living a symptom-free lifestyle. I still struggle every day with symptoms, so I know these suggestions are so relevant to my life right now.

Monday, October 1, 2012

Learning to be disabled: feeling like less of a person

I recently took a brief trip to California to visit some beloved friends. As you may or may not know, I've been struggling a great deal with pain 24/7, as my RA seems to have outpaced Humira's magic touch. I use my cane whenever I'm moving around, whether I'm just headed to the kitchen or I'm out and about (which happens less and less often as the pain keeps driving into my joints). It's only in the past few months that I have begun to accept a new label for myself: disabled. I use ramps or elevators instead of stairs. I let myself think about the possibility of applying for disability, and all that the process entails.

And, for the first time, I called the airline and requested wheelchair service. I have been regretting this choice since my first flight out of Denver International Airport.

Wednesday, September 12, 2012

Putting Dreams to Rest

(I have been avoiding writing this particular post (and thus, avoiding writing anything here at all) for about a month now. It's a particularly emotional update for me, which can be so scary to put online for everyone ever to read. But here goes.)

Waking up every day with RA is the hardest thing I've ever done. In the last month or so, I have gone from feeling as if every small victory counted to feeling like I have no small victories at all. Living every day in this body is an uphill battle, and a discouraging one at that. Sometimes, after an entire night of fruitless attempts at sleep, I'm so physically exhausted that I lie in bed until 4 in the afternoon. Sometimes it takes that long just to convince myself to get up and face the pain. I'm wearing a pretty dress right now, not because I feel particularly attractive in it (let me assure you, I don't) but because it's so much easier to throw a dress over my head than to try putting pants on for two hours.

In the midst of all of this, I started school once again. While I am thrilled to focus on something besides how utterly horrible I feel, I can't help but miss campus a little bit. Online courses are a WONDERFUL resource for a student like me, but being trapped in my apartment because I can't get up the stairs has begun to bring me down, down, down into the depths of RA depression.

As I try and shuffle through each day, I've begun to think about my options for the future. Because really, what are they?

Sunday, August 26, 2012

Guest post: Financial Hardship and RA

I'm SO GRATEFUL for my guest writer this week, who showed up right when I was trying to figure out how I'd ever get a post out during such an incredibly hellish month! Please enjoy and share your thoughts and feelings about this post - I know that for me, financial hardship is an ever looming threat. I need three doctors, ten or eleven prescriptions, and money for school, but I'm struggling to make ends meet because very few employers are truly willing to hire someone with as obvious disability as mine has become (which is a WHOLE different topic for another day!) Without the support of my loved ones, I'd be in some pretty serious financial trouble.

Thank you again to Alex, who took the time to write this very concise post on the topic.