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. )

Hands hands hands

There are a lot of frustrating things about living with RA. Sometimes, I have bad, grumpy, awful weeks, and other times my weeks are pretty great despite my immune system gnawing on itself. This week has been a bad grumpy awful week. Yes, some of it is stress - with my job, with my personal life, with my body (which is clinging onto weight like crazy, despite my best efforts). But really, this week it's been one little thing that has really set me over the edge:

Packaging.

No, really. This week, it seems like everything I want to eat, throw away, put on, or otherwise use comes in packaging that constantly defies my every effort to tear it apart.

I love my hands. Really, I do. They are fantastic, they do great things for me, and I need them to be my hyper-organized, super anxious self. They help me organize my life. I love my hands, even after the RA tore through them and made my always-stubby fingers look like little dinner sausages. Even after the weird osteoarthritic node grew in my thumb for no reason whatsoever. Even after my useful right wrist got all swollen and sore. I still love my hands.

But MAN! This week, my stubby little fingers are so tired of trying endlessly to open bags of salad and fruit cartons. Is it really that difficult to fashion some packaging that is easy and simple to open? Does opening my new yummy bag of salad REALLY have to feel like wrestling with a balloon? How come my yogurt has, this week only, decided to come with an impenetrable, nuclear explosion-safe lid? Why is my fruit packaged in a bomb shelter?

Because this is really how it feels to have my hands this week.

Another year older and about ten years wiser

Today is my birthday. This isn't very exciting, by itself. It's certainly not a milestone birthday, and I don't have a lot going on right now. However, this is my first birthday since my RA diagnosis, and it was a great one despite some lingering pain. Here's to 77 more fantastic birthdays, each more free of pain than the last!

It's so strange to think about the person I was exactly a year ago. I had a different house, a different roommate, a different relationship, and a totally different take on life. I'd rigidly planned out my next ten years, down to dates and locations. I thought I would breeze through the remainder of my credits, graduate this year, and head out for law school. I thought I would continue to work retail until I broke down completely. Most importantly, I had self-diagnosed the pain and swelling in my fingers as moderate carpal tunnel, and I ignored the pain in my feet completely. On my 22nd birthday, I had no idea of the giant roadblock about to be plunked down right in the middle of all of my carefully constructed plans.

Despite that giant roadblock, complete with daily pain, stiffness and self esteem struggles, I am happy to say I like myself more today than ever before. I've come a long way from the negativity and self-doubt that used to surround me. I'd like to think I am happier, more relaxed, and in some ways, healthier than I have ever been.

Thank you so much to my friends and family for the support and love they've continually given me this year. I could not have made it without you!

A brief moment to appreciate my family

Today is my little sister's birthday, and she's not so little anymore! Some of my very first memories are of her birth - hearing that my wish had come true and I had a baby sister waiting for me, riding in the taxi with my grandma, holding my new sister for the first time and watching her little scrunchy face react, and being SO disappointed when she came home from the hospital and was not an instant bundle of fun. After she arrived at the house, I wished my sister away SO MANY TIMES, but today I could not be more delighted that my wishes never came true. We've been best friends and constant companions for years and years, and kept each other company during the saddest days of our lives. My sister is probably my biggest fan and my most loyal supporter. She loves me always and forever, no matter what. When I'm having a rough day, she is the first person to declare that she'll beat up the ENTIRE WORLD just to make me feel better. She worries about me constantly, and checks up on me often. I could not ask for a better sister or a better, more steadfast best friend. Liz, I love you so much and I could not get up and do this every day without you there to support me every step of the way. Thank you for your love during the ridiculously trying process of RA treatment! The happiest day of my life remains the day you were born.

In honor of Mother's Day, I also wanted to say a few words (haha, like I ever only have A FEW) to my mom. Mom, there are only so many ways I can tell you how much I love your unconditional love and support, but know that my appreciation is boundless. Every year in my Mother's Day cards, I write how grateful I am to have you as my mom, and how much I love that you're in my corner and fighting for me no matter what. These are still true this year, but I wanted to add: I may not love this RA, and I definitely wish I did not have it, but my diagnosis has brought us so much closer and strengthened our relationship intensely, and I wouldn't give that up for anything. Your daily texts to check up on my condition get me out of bed on the roughest of mornings, and your unwavering dedication to finding me the best treatment possible have made me, in turn, more committed to my own recovery. You support me and love me even at my worst, and exalt in my victories with me at my best. How blessed my life is, that I get to have a mom like you thinking about my well-being every day! Thank you for the time, support, money and love you have put into my life and my recovery. Our relationship will never be the same, and I couldn't ask for anything more.

I would be nothing without my family. Thank you so much, from the bottom of my heart, for your limitless love.

Those small victories...

I don't think anybody with a chronic illness could describe life with the disease as anything less than a constant chore. Taking care of a chronically ill body is like taking care of a college apartment - something's always messy, something's always falling apart, and there is NO WAY you can afford to fix everything that needs fixing. Lately, my body's multitude of problems have begun to wear on my very last nerve. Every week is a new medical adventure, and I'm a little tired of the wild ride. I've been exposed to so many new medical procedures since my diagnosis, and sometimes I just want a break!

So, morale's low on the home front. It's totally understandable, and it happens to all of us. I can always say, "Hang in there, friends!" but let's be honest: how many times have you heard that already? I probably tell myself to hang in there at least once a day, and I even get sick of hearing myself say it!

But something happened in this last week that really brought me back from the brink of utter frustration. It's not a very big success, but it's also a real success at a time when my body's failings have been weighing heavily on my mind, and it's MY victory over my RA.

Guest Post: My BEST friend on being dealt a crappy hand

As you have probably determined by now, I love reading the perspectives of my family and loved ones. When my best friend, Ashanti, offered to write a guest post for me, I jumped at the chance. Here's her take on my RA. I love you Shanty! (I will caution, there's some language in this post.)

Reducing Stress by Accepting Help: Advocacy at the University Level

Several weeks ago, the very knowledgeable Marianna from A Rheumful of Tips approached me about writing a guest post. Of course, I happily agreed, and that's how this post came to be! Please go visit Marianna at A Rheumful of Tips and read the except (my very first guest post!) there; you can read the full post below.

I was diagnosed with Rheumatoid Arthritis in August 2011, two short weeks before fall semester began at my local university. Assuming that my R.A. was progressing slowly, my rheumatologist did not discuss with me the symptoms I might begin to experience. Instead, I did my own research, felt reasonably satisfied that I had a pretty mild R.A., and headed back to school.

My semester was a horrendous, stressful mess. My arthritis advanced far faster than anyone expected, and I missed more classes than I attended. Every day, my stress levels rose, my sleep schedule fell further out of whack, and my arthritis grew more painful and limiting. I had a doctor’s note, and while my professors seemed understanding, many were unwilling to give concessions. My attendance grades suffered terribly.

I made it through (somehow) with decent grades, but my body and mind were devastated. College is rough no matter who you are, but trying to balance schoolwork with my ever-menacing R.A. brought on more stress than I have ever experienced before.

 It was only after I had completed my terrible semester that I finally took the advice of my favorite professor, who had encouraged me to seek out Disability Services. At the time, I didn’t feel as if I deserved help; I had yet to accept my debilitating illness as a disability. After watching the quick work stress made of my already deteriorating body, though, I realized that I needed some support.

My university’s Disability Services Office advocates for any student who falls under “disabled” requirements, as described by the Americans With Disabilities Act of 1990 (Current ADA text can be found here). Sufferers of widespread, chronic and debilitating pain generally fall under this category.

From the minute I sat down with my new advocate, I knew I had done myself a grave disservice by shying away from this valuable resource. My advocate listened intently, took extensive notes, and provided me with the professional support I needed to focus on school. I came to realize that Disability Services was not there to make the conditions of my degree easier, but instead to provide knowledge and advocacy, taking away the stress of managing and explaining my R.A.

Together, we worked out a number of little solutions that might make my semesters less stressful, from the use of my laptop for note taking to removing or lessening attendance requirements. I distributed these solutions to my professors in the form of an impact letter describing the ways in which R.A. affected my education; professors had to sign a form verifying that they had read and understood my impact letter. By requiring me to seek out my professors myself, Disability Services encouraged open dialogue about my disability, and ensured that each and every professor met my educational needs.

I will never have to advocate for myself again. If ever a professor refuses to make changes, my counselor with Disability Services will stand by my side. When my arthritis began to take over my life, I wondered if I would ever graduate.

Having a chronic illness is life changing, whether you are still a student or are far beyond school. Take advantage of the helpful resources provided for you, and reduce everyday stress on your already struggling body.

(More information about the ADA can be found here)