A day at the doc

Over the past 4 years I’ve tried almost every drug on the market. Injection, pill, infusion, steroid, you name it. Nothing was working. My body was unresponsive to all treatments attempted and it was beginning to take a major toll, both physically and emotionally. Now, at this stage in the disease I had become pretty accustomed to receiving negative reports at my monthly rheumatology appointments. This one particular appointment, however, took the gold.

So I went in knowing I wasn’t doing well, but had no idea just how bad it had become. I remember my doctor pulling out this stupid chart with a skeleton on the computer and telling me that 80% of the joints in my body were inflamed. All I saw was red. All red. No green. Just red. Reds never good. Not on exams, not on skin, not on a skeleton. Can they at least give that skeley a smiley so it can slightly resemble a real person? The discussion that follows was kind of a blur but this is what I can recall….

Doc: “You know I’ve been seeing you for over 2 years now.”

Me: “Yep, and you must have a nice beamer parked next to my cavalier because of it.” (ok maybe I didn’t say that, but I SO wanted to)

Doc: “You’ve already tried quite a few of our available options. Methotrexate, enbrel, prednisone, humira, lefludomide…

…more drugs I can barely pronounce let alone spell…

Me: “Yeah and whatever we do next, no more methotrexate.”

Doc: “In all of the patients I see, you are in the top 1%. This disease is progressing quickly and if we don’t stay on top of it…”

Me: “I take it this is the only time being in the top 1% isn’t a good thing?”

Doc: “I know you are optimistic about this, but I’m afraid you are not taking your situation seriously enough. Your disease has progressed at astonishing rates, when we take your age and the numbers into consideration… BLAH BLAH BLAH”

And there I was, sitting quietly. Completely zoned out by now, only able to see his lips moving. No words. Just movement. I was focused on planning my escape route and wishing I was anywhere besides this cold, drab office.

Damn it doc. Don’t you know I’m trying to avoid the inevitable. Let me find my happy place so I don’t ball all over the place while trying to keep this kotex liner you call a hospital gown snug on my naked bum.

Doc: “You are extremely atypical. We need to begin talking about some of our other options.”

Me: Other options? Other options! What is this? What’s happening? “oh” Deeeeppppbreatthhhhh. “k”

The less I say the less of a chance I will lose my shit. And my gown. Keep. It. Together.

That’s when he dove into a discussion of our need to consider future medical trials. And my numbers. My age. My progression.my future. Yeah, that’s right about when I lost it. There was no stopping the gross, high pitched, heaving sobs that were radiating through me. damn I hate crying. Especially at the doctor. Not the time, nor the place. They’re doctors, not shrinks. Naturally, there was no Kleenex to be seen for miles. I think they do that on purpose so they have an excuse to leave the room from people like me. He ran.

A few minutes later and a trash can full of snotty tissues, I was miraculously able to gain composure. Doctors have a way of delivering information all at once, right. Well I’m certainly no doctor and without a doubt have slower processing speeds. This was information I could handle. It was. I knew it was coming; I simply wasn’t ready to hear it out loud.

We then worked together to establish a treatment plan for the now. I told him that while I appreciated him discussing my long-term health plans and was considering all options, I was not quite ready to go down that path. Let’s discuss medical trials or alternative treatments if and when the time comes. When that’s our last and final option. Until then, let’s just focus on the now. Not future numbers. No ifs. No when. Just my current plan of attack. That’s it, because in all honestly I can’t handle thinking long term. Not with these circumstances. While I know that day may come sooner rather than later, and perhaps medical trials will be something I can no longer avoid; today, I’ve got options. Who knows what tomorrows going to bring. All we’ve got is today. So regardless of those inevitable crappy circumstances that await for us tomorrow, let’s try our hardest to save the stress and tears for then.

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Meet my nephew, Brooke. Here she is on the beach after a long winter in Ohio. This girl knows how to enjoy the now! Can you blame her?

 

Let it go

Sorry to disappoint, this one has nothing to do with Frozen. But who am I kidding, I’m sure you wouldn’t mind if it did. That flick was phenomenal.HEY-ELSA

No. No Elsa inspiration here, but its that song that’s got to me. That catchy tune that I swear every preschooler in America knows by heart. I’m not sure what those folks over at Disney were thinking. Listen to those lyrics: “Let the storm rage on, the cold never bothered me anyway.” Hmm? Must have been written before Christmas, because guess what? The colds certainly bothering me! Right along with 3/4 of our country right now. Please, god storm stop raging on already!

It’s a snowy mess here in Charlotte. And I know. I know exactly what you’re thinking. You live in Charlotte?! Quit your bitching! This is only the second snow for us southerners. This second snow, however, happens to have fallen on the weekend of my best friends wedding shower. In Cleveland. OHIO.While we’ve only gotten 4 inches, another storm is expected to hit Sunday. A bad one. With freezing rain and snow throughout the mountains, my plans were halted; and I’ve been sulking all day long. Of course it had to happen this weekend. Of course I had to be driving. Of course, I miss out on everything fun. I’m definitely milking my sorrows. I know I can’t do anything about it, but I’m alone, it’s freezing, and I’m pissy.

Here’s my gal and the bride to be, Allie and I back in the day. By the looks on our faces we’ve clearly always shared the same hatred for Winter.

 

Wah wah wah. Right? Just writing this feels a bit ridiculous. I’ve now ruined my perfectly good afternoon by throwing myself a full-blown pity party. Does missing my friends shower suck, of course. Does my pity party feel well deserved? Oh yeah. But is me wallowing going to help the cause? Certainly not.

Perhaps you catch yourself doing the same from time to time. Questioning why bad things have happened to you. Or why they have to happen at all? Big or small, terrible things happen every single day. And some are easier to deal with than others. Like receiving a diagnosis of Rheumatoid Arthritis. I’m sure none of you jumped for joy when you got that bit of info, am I right? But you’re dealing. You’re managing. Some days better than others, I’m sure. But overall, you’re doing all right.

Some things we just can’t control, such as a difficult diagnoses or snowstorm. And thankfully, others, we can. Like our attitudes and the choices we make on a daily basis. There’s always going to be terrible things happening, both big and small. But if we allow for the uncontrolled circumstances to take precedence over our thoughts and actions, how will we ever have time to enjoy the things we can control?

So while you’re stuck inside, fighting off that ever so evident seasonal depression and cabin fever, I challenge you to gain control over all that is controllable. As for those uncontrollable circumstances? Go ahead, have your moment, enjoy your pity party. I’ll bring the wine, you get the chocolate. Then remember those catchy lyrics from our friend Elsa, “Let it go! Let it go!” Let it all go, put on those big-girl-positive-panties just in time to kiss winter goodbye. The snows melting, friends and spring is about to be sprung!

I may have overdone it on the graphics, but they were just too good not to share.


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The Good Stuff

Two outstanding things have happened over the past week related to one of my favorite places in the world: Columbus, Ohio.

#1. THE Ohio State Buckeyes will be playing THE game of the year this coming Monday to take home the national championship. And #2. The shoe, the Bucks home stadium will be accompanied by my all time favorite: Mr. Kenny Chesney this coming June. So in lieu of all the good stuff to celebrate in our lives, and one of my all time favorite Kenny songs, “The Good Stuff” I’ve put together my own list of sorts, of course related to the RAH.

So here’s some of “The Good Stuff” about having a debilitating disease…

1.) You don’t waste any of your sick days. Not a one. And while doing so, get to catch up on Netflix while your pals are all slavin away to the man.

2.) You sleep for hours on end and stretch upon rising. Dogs really have it made.

3.) You learn about health in a way you never before imagined.

4.) You give up gluten for everything but your waistline. Even if for only a week, you really do feel better.

5.) You have an excuse NOT to run marathons. No offense Angie. Thanksgiving is for turkey, not trotting. (Hopefully this gives me an out next year J)

6.) You hibernate in the Winter…

Or join me down South J

7.) you have absolutely no problem dropping $100 for a massage. On a Tuesday.

8.) Target pharmacy rewards. 5 rx fillups=5% off. enough said.

9.) You learn the true meaning of bedside manner. Oh, and that nurses are the ones really running the show.

10.) You enjoy the good days, or the good hours. Whatever you’ve got, they’re great.

While you may not give a damn about OSU football or Kenny Chesney; I hope you take a moment to ponder and appreciate a few things in your own life you consider to be the “The Good Stuff.” Cuz in the end, that’s all that matters anyways, right. No football game or disease is going to be the end all be all. Well, we at least have to try hard to make it that way.

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how firm thy friendship

 

See Ya Later Alligator

Im not proud to admit it, however, there are times while im working and I completely zone out. I typically realize this 2-3 minutes mid zone. Luckily, I chose a career based around something that comes so easily to me: chatting. As a speech path, I do this all day long. Ill be carrying on what an outsider would observe as a structured conversation, filled with pitch changes, turn taking all that good stuff. Then I snap back to reality and realize, ohh shit! I’m working with a child here. Focus, you a-hole.

During one of these brown-outs, I happened to be teaching one of my clients the concepts of full and empty. While I was utilizing his apple juice and my nalgene I’d barely sipped from all day (I care enough to fill it, why can’t I remember to drink the damn thing?) I caught myself in one of these instances, where I had just slipped into no-man’s land. Id like to think its my undiagnosed add kicking in. I want to accomplish 9000 things in one day, and sometimes I have difficulty telling my brain to focus on only one. As a woman, we do this naturally.

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Anyways, here I was conversing away, and lost myself in translation. You know the saying “you can either look at the glass half full or half empty.” Yep, that’s what I got from that lesson. See you later, 8 year old alligator.….

Do you consider yourself the glass half full or half empty type?

Now, I would like to think that I am the type who views life as a glass half full. But do I really? Have I been doing that in every aspect of my life? I’m ecstatic that I’ve found a medicine that finally works, however, terrified thinking about long-term side effects? I love my job, but every Monday; contemplate any and all other employment options. A bartender in Bali? A florist in Italy? A stay at home mom to my dog, socks? All viable options come Monday morning. Ok maybe Monday-Wednesday, but that’s umm, normal…right? I love Charlotte and the life we have made here, but god do I miss my family and friends. And lets not even talk about the restaurants and football in Columbus.

So here I was, mid session, now thinking about all my favorite meals in Columbus….Fish market. Milestone 229. Hubbard grille. Crap, still at work. After I snapped back into my therapy session, I made a mental note to revisit this later in the night, without an 8 year old and a cup of apple juice to micro-manage. This deserved some serious mental devotion. So that entire night, throughout my workout, dinner, shower, and walk, I practiced strengthening one of my favorite (my boyfriends least favorite) hobbies. ☺ I over-analyzed. I picked apart as many areas of my life as I could. My relationships, my career, my mental and physical health, my past, present and future, my finances, my religion….it all underwent the over-analytical process with only one end question: was this an area I considered to be half-full or half-empty?
Ok. Here goes. Let’s take for example: my religion. Here’s something I have wanted to strengthen for the past, uhumm, years. I was gifted the book: “Jesus Calling” and have read it a few times when, well, Netflix wasn’t responding. That’s something, right? Yes, glass half full. Wait, have I read it every day or even every other day, like I initially intended? Wrong. Half empty. My r.a. has been kicking some serious ass, in a good way. Ok definitely full. Well then why am I so bothered every time I can’t do a push up or burpee, or anything for that matter involving my wrists? Half empty? I found that the problem was I was lying to myself just to feel better about these areas in my life I would like to strengthen.

It’s ok if you have areas to improve upon, it’s actually awesome. There should always be room for improvement, that’s how you know you’re setting your goals high enough. The more and more I thought about it; the more I realized that it’s all about perspective. Sure R.A. sucks, but it could be terminal. Sure, there are days I wish I were anywhere but work, but I could be unemployed. My wrists are shot to shit, but at least I still have them. Why are we pre-programmed to see and think the worst? If you’re one of those naturally optimistic people, congrats. How the hell do you do it? I myself, have to work for my optimism and happiness every friggin’ day.

Now trust me, I know that at times, having a positive outlook may seem close to impossible. When your body feels like its shutting down and you are at a battle from the second you wake up to the minute your head hits the pillow at night, seeing the glass half full sure is easier said then done. I believe it’s a matter of understanding the difference between a bad mood and a bad day vs. a bad attitude or outlook on what you’ve been dealt. Remember, that the grass really ISNT always greener, no matter what lawn service they’re using.

And it’s ok if you currently own that glass-half empty perspective. The great thing is, you can in fact, change that! Sure, there will always be things that when you sit down and over-analyze, could be better. When it comes down to it, as long as you can say that you are working to fill the glasses you’ve been given, who cares how full they are. Whether you consider your glass to be spilling over, or dry as a dessert; do yourself a favor and work to fill that bitch back up.

F.Y.I So that “Jesues Calling” book is now on my dresser. Not buried with the 12 others I have purchased which have taken a back seat to Netflix. A small step, yes. But it’s one more drop in my glass.

F.Y.I #2: after writing this, I felt sorta bad about my brown out. I benchmarked my apple juice kiddo, and sure enough, two months after and he’s mastered the whole full/empty concept. Maybe I won’t move to Bali after all.

Garbage Day

You know that bullshit analogy about seeing the light at the end of the tunnel or that one about sunshine after a storm? While that advice typically evokes my gag reflex, I’ve discovered there is some truth behind the sap. Take for example, the day I fought my garbage can. The only piece of furniture, if you can even call it that, my roommate contributed when we moved in was this shitty little stainless steel CIRCULAR trash can. You could stain a piece of poop and he would love it. “What?! A Stainless steel $80 bin you throw shit in. What a steal!” Who the hell ever thought a circular garbage can was a good idea anyways? If you haven’t owned one of these overpriced beasts, consider yourself lucky. Even on my good ‘RAH’ days I would fight this thing. It had the circumference of an f’ing cereal bowl topped with metal rings that were supposed to hold the trash down.

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isn’t she a beauty.

On one particularly bad day, roomy was working out of town for the 9th month long trip in a row and I was feelin reeeaall touchy. You know the kind of day where youre sure the rain was a sentence from god. Everyone and everything is out to get you, including the weather. OF COURSE not ONE of my 150 deluxe set of tupperware containers would match. OF COURSE im out of toilet paper and have to waddle over dripping piss on my new tarjay rug. OF COURSE this god forsaken F’ing trash can will not just release it’s piranha sealed rings already. Give me my trash, for crying out loud! GIVE ME MY TRASH! Is that too much to ask? Apparently so. Roughly 2 minutes and one sore wrist later, that stupid ass trash can found itself a new home: inside my perfectly sized, pain and tear-free, (yes, that’s tears as in I cried over a trash can) easy to open garbage can outside on the curb. Halleighluijah! Freedom at last! Freedom at last I cried. Not really, but shortly after I did stop crying. Then I laughed….A lot and called Will, 3000 miles away. I once again began crying. This time in fits of laughter. Because 1: his overpriced hunk of junk was gone. Forever! and 2: I cried over a garbage can. What the hell. What an emotional wreck I’ve become.

While it’s clear that can was out to get me, seriously, Kate? Does that deem tear worthy? Hell no. No garbage can is worth crying over. Good lord. Nor was it worth the bruise I got from manhandling it into its proper new home. My tears, however, were justified. I was simply letting go of some pent up anger, which perhaps was misdirected. What I really was upset about was the fact that I hadn’t worked out in two weeks because of stupid ass inflammation, which was overtaking every joint on my flabby body. Or the fact that Will had been gone for a straight month. Or my new medicine which caused some serious fatigue. Or my period. Yepp, that’s it. Definitely my period.

Since my diagnosis 3 years ago, I’ve found myself on this emotional roller coaster, and it’s a ride from hell. Sadly, the day of the garbage can is only one of many, many more. I’ll be perfectly fine for like 3 months, calm cool and collected. Then bammm!, something as small as a garbage can throws me in overdrive.

Most days I want to ignore that anything is wrong with me at all. I just want to be normal again. I want to be 26 and normal and healthy. But I’m not (well not all the time at least) and there is stuff wrong. Some days, there’s lots of things that are wrong. And when you add little problems on top of big problems it can feel like one massive storm that is bigger and way stronger than you are. But you know what, most of those little problems go away. Whether it’s a trash can, a swollen wrist, a crying baby, a dry casserole or a flat tire, those little problems do and will soon go away. When your 2 year old is crying over spilt milk, literally and figuratively, grab the bounty and clean the shit up. Look at that, now you’ve got a fix for that dry casserole. Life is funny. Kids are funny. RAH is really funny. Well sometimes. Laugh every day. If possible, laugh every hour. Look for the sunshine within your storm and that dim ass light at the end of the tunnel. I promise it’s there, and I promise, you will feel a million times better once you’ve found it.

I’ve Been Selfish

So I’ll admit it. I’ve been selfish. It’s been roughly 5 months since I had the idea to begin blogging. And it’s taken the full 5 months for me to finally find some inspiration and start posting. I spent an absurd amount of time worrying about colors, font and layout. Then I realized that no one researching R.A gives a shit about blog design. As long as it’s legible, we should be good. You’re here because you or someone you know has this crappy disease and you’re looking for someone or something that makes sense.

Im no expert, and im certainly not a doctor. But I do have experience and im not gonna sugar coat it. I’ve been through hell and back, battling for 3 years through what I can only pray will be the very worst of this disease. I’ve tried just about every medication, diet, workout, pain/stress/inflammation reliever there is. I am not for or against drugs, nor am I a vegan, homeopathic naturalist. I simply haven’t been around long enough to know the answer. While I have finally found (knock on wood to your knuckles bleed) the right treatment for me, I continue to face everyday obstacles and am constantly reminded the pain can return at any given moment; so I better enjoy my freedom while I’ve got it ;-)

That’s just what I’ve been doing over the past 4 months or so. Selfishly enjoying my freedom. I haven’t written because, for the first time in 3 years, I haven’t had to think about the ‘RAH’ every hour of every damn day. And you know what. Its been so nice. I have however, lost touch with why it is I wanted to blog in the first place. I think that’s the worst part of the RAH, you think you’re doing great, and then bam! I almost forgot, there’s that disabling disease kicking my ass all over again. Back to square 1.

It wasn’t until I participated in the R.A walk that I was once again reminded and inspired. I had the opportunity  to meet so many wonderful people whom, like me have the RAH. Young and old alike, they all were out to support one another. That’s what we need more of. Support. Somewhere to go. Someone to turn to. Talk to. Share ideas. Tears. Accomplishments. Laughter. Spread happiness. Let this blog be a starting point, one of your few or many outlets. While over 50 million people in our country have arthritis, how many friends can you call who really know and understand what it’s like? I have zero. And it’s not our friends and families fault, it isn’t. Until you’ve gone through it yourself, you simply can’t fully grasp all that Rheumatoid Arthritis entails. So yes, I have been selfish, but I promise, I’m here and I get it.

In the past three (and most challenging) years of my life, I’ve learned that hey, Its ok to be selfish! Enjoy the little things. Like your one-hour of being pain free after the pills kick in. Or your can opener. your wine. your favorite show. your cat nap. your brownie. your book. your freedom. Enjoy that time. Whatever amount and whatever form that may be for you. It’s important not to forget that you need time for you, too. The RAH can take a lot from us, but don’t let it get the best. It’s ok. Have that 3rd, or 4th brownie. I’ll be eating mine with an ice cold galss of….Cabarnet while watching my 4th straight episode of Nashville! Selfish, Maybe? Happy, definitely!

celebrating my first round of infusions the only sensible way. selfishly gorging on wine and dessert. :)

Celebrating my first round of infusions the only sensible way. selfishly gorging on wine and dessert. :)

 

enjoying 2/3 of my favorite little nuggets.

Enjoying 2/3 of my favorite little nuggets.

Things you should know, for the above and future posts:

1.) Rheumatoid Arthritis= the “RAH” It makes it sound so much more enjoyable, don’t you think?

2.) I will apologize from the get go for my potty mouth. My hopes are not to offend anyone with my choice of wording. I swear out of terrible habit;however, that’s me. I type as I talk. Sorry folks (Are you happy mom?)