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.

Thursday, August 2, 2012

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!)

Tuesday, June 26, 2012

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. )

Sunday, June 3, 2012

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:


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.

Sunday, May 20, 2012

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!

Monday, May 14, 2012

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.

Sunday, May 13, 2012

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.

Friday, May 4, 2012

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.)

Thursday, April 19, 2012

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)

Saturday, March 31, 2012

Pushing through the rough stuff

Generally, I have a very organized post that I've written after some extensive thought and planning. I don't really have anything like that this week because a more immediate situation has taken over my life.

I began my Humira treatment on January 25th, after having been on an unsuccessful three months of methotrexate. At first, I injected (or, more accurately, the BF injected FOR me) Humira twice a month. On February 26th, my rheumatologist bumped me up to weekly Humira injections because my body still showed limited signs of responding.

Today is March 31st, and I am in more pain than ever. I literally stumble through every day of my life, and sometimes I struggle to stay the happy and positive person that my friends and loved ones have come to expect. When people say, as one friend did today, "What have you been up to?" I don't know how to respond, because what I'm up to is nothing more than trying to retain some semblance of myself through this dewomanizing, dehumanizing battle with my own body.

I didn't expect that I wouldn't be able to greet the oncoming spring with my characteristic joy. Around my rheumatologist's office, Humira has been touted as the miraculous treatment that immediately restores those sufferers who were unable to find relief in the less-harsh medication options. I guess I assumed Humira would be the "Superman drug" for me too.

So what do we do when our expectations fail, or when the superhero drug we have long awaited falls flat? I must admit to my friends, new and old, that I have not been the best at coping for the last few weeks. My positivity feels a little forced, and I can't quite muster up the strength to fight back at my disease some days. I want to be inspirational to other young adults who are suffering through some sort of chronic disease, but this week is not my week.

The key, I think, is that sometimes we can't be all hearts and flowers and positivity. It certainly helps to keep a bright mindset, but chronic illness is a serious and life-changing diagnosis. Sometimes, it will weigh on you very much. Sometimes, it feels like my RA is weighing down my whole life, as well as my body. So no, being happy all the time probably isn't realistic.

Pushing back is. Grim determination can often be the answer. I don't want to dress myself, haul myself out of the shower, or drag myself up the stairs, but sometimes I have to. I'm not going to be all happy hearts and unicorn farts about it, I just grit my teeth and do it. A lot of chronic pain is just doing it, because to fight back and assert yourself is better than allowing your illness to dictate your emotional well-being and your physical presence.

Living every day under the oppressive gaze of your chronic pain is a miserable, miserable place to be, but only if you let it feel that way. This week, I've been feeling suffocated beneath my pain, but I'm pushing back because I have to.

Sunday, March 25, 2012

Feeling pretty when it's an uphill battle

Hello everyone! It's spring (sort of) and that calls for a much more cheerful post today. The truth is that I was not totally satisfied with my previous post here. I felt that I did quite a lot of whining, and not much positive thinking. I'm going to make today's effort much more upbeat, so please see it as kind of a companion post to last week's.

Now, as I discussed last week, it's very difficult for me to maintain any sort of self-esteem since my arthritis began to attack my body in earnest. I suspect that this could be the case for many a chronic pain patient, since chronic pain often manifests itself in a number of unpleasant physical symptoms. I don't want to feel terrible about my body all the time, of course, because my body feels pretty terrible all by itself! I did some brainstorming, and, integrating both my own routines and some that I'd really like to try, came up with this list of self-esteem boosting tips. Let's take a look.

Wednesday, March 14, 2012

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.

Thursday, March 1, 2012

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...

Friday, February 24, 2012

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.

Tuesday, January 31, 2012

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.

Can't Sleep? Edit Obsessively!

This is an entirely unrelated post, but I wanted to get some feedback from anyone who reads regularly, or stops by sometimes, or maybe even just stumbled across the blog just this once. I am struggling to maintain a solid following, and while advertising for the blog is a different thing entirely, I'd like to keep readers coming back. I've started to wonder if the appearance of my blog has anything to do with the relative lack of interest.

I can't sleep tonight so I've done some tweaking with the blog. I had complaints about the original font so I changed it, but am still not quite happy. I added "Read more" links, since I'm soooooooo wordy and those giant posts are a little unappealing when you just want to scroll past them. I rearranged the layout a bit. I'm thinking about changing up the colors to something a little brighter and more positive.

So let me know! Tell me what you like, what you don't, what looks pretty...etc. I'd love to hear it!

Saturday, January 28, 2012

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?

Wednesday, January 18, 2012

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!

Monday, January 16, 2012

Your Child Has a Chronic Illness: A Mother's Perspective

While I have played around with the idea of starting a blog since I received my RA diagnosis in August, my mom was truly the inspiration for sitting down to begin this one. Her belief in me is unwavering, and the pride she feels for me helps me to be proud of myself. I always knew I wanted her perspective at some point. Today, as part of my continuing dedication to the topic of living with chronic pain, I want to give you my mom's perspective. Thank you so much for the time you spent writing this, Momma.

Thursday, January 12, 2012

Rheumatoid Hijinks!

((This is not really THAT related to RA. Really.))

So, I haven't been sleeping that much for the last month or so, right? (I haven't, but we will discuss this in a real post later on...so just say yes and proceed) I am a college student so I'm pretty good at fakin' the smarts after an all-nighter. After a few all-nighters, or many in a row, I am so goofy it might embarrass you. Right now, I am so goofy, I don't even know I should be embarrassed for myself!! I'm a little confused, a lot groggy, and generally kind of lost.

With that backstory, here is a conversation. Followed, probably, by more backstory. Forestory? Afterstory?

Friday, January 6, 2012

Gettin' Sexy Through the Pain

When I began brainstorming blog topics, I had this idea that I could write one blog on living with chronic pain. Thinking back, however, I realize that in all of 2011, I had only one pain-free month. Even in January 2011, before I had any inkling of what lay in store for me, I had already begun to develop symptoms of rheumatoid arthritis, and I dealt with pain every day. Chronic pain is such a giant part of my life now that I could hardly write one single entry on it and call that good. Instead, I want to start off today with a discussion of chronic pain and intimacy, and continue on in the next few weeks to talk about chronic pain and its relation to a number of important processes and people in our daily lives.

So, let's talk today about something really awkward: S-E-X! But that's not all. Really, this conversation is about staying intimate when you feel like a big sore, swollen cow.