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. 

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.

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.

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?

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.

Reflections: Happy Rheumiversary to me, and a small look back at my epic journey thus far

A year ago today, I sat by myself in a rheumatologist's office in Denver and listened as an aging doctor read to me from a pamphlet, running his pen along every word as if I were just a child. To be honest, on that day, I felt as helpless as I'd ever felt as a little girl. My diagnosis day was frightening; my mom made plans to go out of town long before we even had any idea that I'd need to see a rheumatologist, and even though I had a close friend and a boyfriend waiting for me when I left the office, all I wanted was my momma.  How could I have possibly understood the weight of a Rheumatoid Arthritis diagnosis? I'd never even heard of a rheumatologist before. That simple three-page pamphlet could hardly prepare me for what was to come.

I guess this should be a sad day, but I'm trying to make it something different. Of course, I don't wake up and celebrate my diagnosis, but I'd like to make my "Rheumiversary" a happy time. RA is a sad disease by itself, so why make that worse? I saw my dad and sister for breakfast this morning, I took a nice long nap as it began to rain this afternoon, and I've generally just done whatever I wanted today. We've planned a family dinner on Sunday to celebrate and reminisce, and a barbecue next week with most of my favorite people attending. I want to make my Rheumiversaries something to remember, not because of the sadness associated with my diagnosis, but because I fill those days with joy and good company.

I've fallen apart this year, many times. I've lost all my courage and my desire to succeed, and at times I gave up entirely and stayed in bed for days on end. There have been weeks, and even months, during which I was sure my life could not possibly turn around. I've been convinced at times that I'd never feel 100% again. While I don't feel great by any means, if I can get up and dress myself every morning, I know I've made progress. As I've said many times, I can choose to let RA become a limitation and a roadblock, or I can treat it as the learning experience it has been. I'm a stronger, smarter and wiser person because of it, so happy 1st Rheumiversary to me!

(A BIG THANK YOU to my loved ones and my supporters. Mom, Liz and Dad have always been there for me; my friends - Ashanti, Caitie, Nicholas, Stacy, Amanda, Mandi, Caroline, Michelle, Bobert and Cray, Kayla, Karl and Kelli - I love you guys so much! My blog readers, THANK YOU for your sometimes anonymous but always fantastic support. If I forgot to mention someone, it's because I just have so many wonderful people in my life! Here's to another pretty fantastic year, RA be damned!)

Straw, meet camel

For three weeks now, I've been struggling to express my emotions to my readers, or my family and friends, or even just to myself. I've been on a roller coaster, from joy and relief to absolute despair. I'm at an utter loss, here, to try and express where I'm coming from. I've written and rewritten this post almost every day, and I haven't gotten any further. I hope this is my final draft.

Long story short, I'm now the proud owner of another medical diagnosis. During a routine physical exam last week, I brought up some areas of my health with which I had been struggling. My doctor immediately ordered a huge list of blood tests. This week, I got the diagnosis. At first, I laughed, because what the heck else was I supposed to do? But then I cried and I've pretty much been crying ever since.

It's just PCOS, guys. It's not even that big of a deal, really. More symptoms to manage, more medications to take, but not a super serious diagnosis, and certainly better than the alternatives. There's a certain sense of relief in this diagnosis, because it explains completely the issues that I've struggled with for years and years. I have an answer and a treatment, and armed with those things I should be able to recover. Maybe six months from now, I'll look and feel better than I ever have before.

So that’s the good news, and I’m honestly thrilled to have found this answer. Beneath that layer of happiness, though, I’m bewildered. How can another thing be wrong with me? How can more of my body be so broken? I don’t feel like I can manage this on top of my RA, which is still more out of control than I’d like. I haven’t even lived with RA for a year! I don’t know how to cope with the summer heat, I don’t know the warning signs for an impending flare, and I don’t know how to handle myself on those rough days when I still require a cane.

Why this? Why now, why ever, why me? This is another lifelong diagnosis, on top of asthma and RA. This requires a constant monitoring of symptoms and medication side effects. This feels like another blow, another kick while I’m down.

I'm frustrated with my broken self. Thrilled as I am to able to express myself freely, and walk, and talk and move (mostly), I feel more and more like I'm stuck in a defective body that will never work right, no matter how hard I try. This body will always be ugly, and it will always be faulty. It will never be what I wanted.

I'm mourning the loss of so many things. I'm not quite over the grief of losing what were once totally normal, healthy-looking joints. Sometimes, I still shed a tear for my early 20s, which were supposed to be filled with all the fun, silly things that newly-freed young adults do. I'm mourning my education, which has been completely derailed. Now, I have some new losses to grieve, and they are so tough to overcome. With PCOS comes a number of reproductive problems, as if I didn't have enough to worry about with the susceptibility to RA looming in my genetic code somewhere. I'm young now, it's true, but I feel that my body has already decided my reproductive future for me, and it didn't ask for my emotional input. To me, as a woman, this decision that my body has so firmly made is deeply, deeply hurtful. How can I recover after being dealt such a personal blow?

I hate the expression, "the straw that broke the camel's back," but after this recent diagnosis, I feel like nothing else is so appropriate. Coping with my RA has become routine. I've been managing my pain beautifully, staying positive, and enjoying every day. I've been so pleased with all my progress. Somehow, one relatively harmless diagnosis devastated all my progress, and left me miserable. I don't know what to do with myself, or how to feel better. Where do I go from here?

This is where I'm at right now. Please forgive me for my inability to communicate, or return phone calls, or answer e-mails. I'm trying to manage myself, but I can't quite handle it just yet. I'll find myself and my coping mechanisms again soon. I'm almost kind of positive.

(I am so sorry for this giant, ranty complaint. I'm frustrated with myself for this meltdown, and I'm wracked with guilt over the incredibly amount of ungratefulness and selfishness this post displays. It is what it is, though, and I needed to write. )