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.

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. 

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?

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. )

Chronic pain devoured my self esteem

In my last post, I discussed overcoming the shame that has accompanied my arthritis. Today, I want to talk about how chronic pain affected my self image.

I don't know if there truly is a body type that reflects an unhealthy immune system. However, I have always felt unhealthy, and I do think my body reflects that. After being born premature, I was a colicky and fussy infant. By 5 years old,  I had developed asthma that sticks with me to this day. Rarely has a winter passed that I have not gotten sick, as I seem to be far more prone to illness than anyone else I know. Now, at 22, I am facing swift, aggressive R.A.

As an unhealthy child and teen, I never felt that my body was "right." It has never seemed to function correctly, it never looked right, and everything about it felt saturated in wrongness. Leaving the high school environment definitely pulled me away from the incredibly unhealthy infatuation with body image of which most high school girls are guilty. As a college student, I have made some impressive strides in accepting myself, and working to change the things I felt were changeable.

A sense of accomplishment: My take on a really generic essay prompt

Hey everyone! I have been busy busy this week applying for scholarships. Today, I completed a particularly difficult essay, and I would like to share it with all of you. Generally, I'm a very strong writer, but I struggled a great deal with this essay. I am often unwilling to use my arthritis to garner sympathy, pity, etc. but I feel that this might be a different situation altogether. Arthritis is a big part of my life right now, and I wanted to share that with the scholarship board, so they understand where I'm coming from and who I am. I would not be this particular version of Kathryn without my R.A.

Anyway, here's the essay prompt: Help us get to know you beyond what’s in your resume and transcript. Tell us about one or more instance when you felt a sense of accomplishment and discuss how or why it was significant. You may include examples from any aspect of your life such as academic, extra-curricular, community service, family, or work.

And here's my take on that...

Not being heard, take 2: When they aren't listening

I've had a very interesting chronic pain saga since the last time I posted anything. Apologies for the loooong break in updates!

I want to jump right into this post with a discussion on the flipside of my last post about being heard, which can be found here. Over the last few weeks, I have really been struggling with my rheumatologist's office refusing to hear how much I've been suffering.

As you may remember, I saw my doctor on January 25th and was injected with two syringes worth of depo-medrol for my pain. My nurse emphasized that I needed to call within three days if my body did not respond to that huge dosage of steroid. And it didn't. So I called, as instructed, and was treated to possibly the worst reception I have had since beginning my relationship with my rheumatologist's office.

Loving Someone With Chronic Pain: A Caretaker Perspective

So I've been waiting on this guest post for quite some time. It's a really special day for me, and I would love for all of you to please read it. My mom's perspective was incredibly valuable and her post was absolutely outstanding. Here's another guest post take on what it's like to know and care for someone with chronic pain.

I asked The BF to write me a guest post before I asked anybody else. I don't think I had even really started writing regularly on the blog when I asked him. I just knew that someone so close to me should share his story. He put it off for awhile, but he wrote it today and it absolutely floored me, and certainly brought me to tears.

When you're not talking loud enough, how can anybody hear you?

I learned a valuable lesson this week; the strangest thing about my arthritis is that it's constantly teaching me all sorts of little lessons. I guess that's what makes blogging about chronic pain a relatively easy task. 

I've been living in constant pain. Every day, I wake up and I'm afraid to move for a minute. Sometimes when I'm holding still my joints stay calm, and I can almost pretend I don't spend every day in bed because I can't walk. A year ago, to calm my crazy thoughts at night, I would imagine riding my horse through green fields, and I would fall asleep. The last time I closed my eyes and hoped for happy thoughts, I imagined going for a simple, slow walk, and the pure joy that imagination brought to my mind destroyed me. Even now, almost a week later, this brings tears to my eyes. How could I think, for so long, that this life is okay? How could I wake up every morning and just accept that I would spend my day in bed by myself? How could I let my pain take me over so completely that WALKING is my happy thought?

Chronic pain is a big bully. Don't let it win

I always have so many plans for my next post here, and then I suddenly change my mind because something else becomes immediately relevant. Today, it's letting chronic pain win.

I started my new semester yesterday, after five weeks of winter break. The majority of my break, I found myself confined to the bed or the couch, struggling to get up just to take a shower. The BF basically acted as my nursemaid. Now, I love him a lot, and am thrilled that he is so willing to take care of me, but being shut inside all the time really made me crazy. I've been ready to get back to school for days. I'd been out briefly with my mom on Sunday and Monday, and, all things considered, felt pretty good when Tuesday rolled around. I had only an afternoon lecture from 2 to 3:15, so I screwed around online, enjoyed my banana and juice breakfast slowly, and gave myself time to digest my morning meds. When the time came to head for the bus stop, I picked up a leisurely pace and strolled my way there. I made it early, which delighted me to no end. How could I ever have taken WALKING for granted? It is seriously the best!