Category Archives: Uncategorized

Take It Back Tuesday: The 3rd!

Standard

Alright. I’ve had like two do overs this week with this blog’o’mine.

First, I wrote a fun post about Christmas and instead of publishing it, I somehow left it in draft. And now I don’t like it. So, much like Kanye, Imma let you finish…but first Imma pour a glass of wine, a glass of eggnog, grab a big handful of candy cane Hershey kisses and do some rewrites. Kidding about the eggnog, when you finally get to see my holiday post, you will learn that I don’t drink substances that resemble snot.

Second, I was all geared up to write about how I’m taking back cooking. I’ve been spending a lot of time hunting down cheap yet locally sourced foods and making good smelling, fantastic tasting, immune system building dishes that I’ve really taken a lot of pride in both eating and allowing myself the time to enjoy the process. So what happened here?

Well. Let’s just say that there’s a well known foodie blogger whose blog I frequent and quite serendipitously, our paths crossed recently. She is not any sort of disease blogger so don’t point fingers. And, knowing I shouldn’t type this but also knowing I didn’t identify myself through my blog or as a reader, let’s just say that said meeting made an impression.

So now I don’t want to write about that either.

So tonight I am going back to a basic. I was discussing this earlier today and I think it is quite apropos for where I am right now.

I have absolutely no control over the RA diagnosis but I have complete control over my reaction.

I feel like I’ve done a good job at channeling my reaction into work with the ACR, AF, and I LOVE my work with IAAM. I also love blogging and getting to know my readers. But what I’ve realized…and I’m sure my last post is reflecting this too…is that I’ve thrown myself into ACTION to control my reaction and somewhat lost sight of me.

In a conversation with a close friend recently, I shared some feelings of confusion with her and her response, after a pause, was ‘You realize what you’re resisting is being happy, right?’

Shocked.

I’d never thought about it but part of the reaction we can and need tocontrol is allowing ourselves to be happy.

I do understand how we lose sight. You wrap your brain around a diagnosis, medications, family and friend reactions. Once you get those settled and decide you want to ‘make a difference,’ your disease becomes about that. In addition, I almost feel guilty admitting to being happy while living with RA.

I think as we learn our new identities as autoimmune arthritis patients, we are in some ways expected to take on the stereotype of the long suffering martyr patient. I wonder if we, as patients who don’t look sick, feel even more threatened by misunderstanding if we look and act and live our lives as HAPPY people? You say you hurt and you say you’re on this serious medicine but you’re smiling and I think you mean it?

Hence the guilt.

I think that’s terribly unfair. RA gets enough of me. Money, time, money, health, money, pain, and did I mention money?

I realize that being happy doesn’t happen overnight but as of now, I’m taking back the control to allow myself that if I so desire. And I do!

What do you think? Do you feel like me and feel guilt when you should be happy? Or am I just especially tangled for an RA patient?

Don’t answer that second part.

Take It Back Tuesday, Part Deux

Standard

Ever since I was diagnosed with RA, I have held myself to a much higher standard as far as pushing myself to DO EVERYTHING YOU CAN, even if you don’t want to, even if you just plain shouldn’t.

And if I fail to cram a million things in, I feel just that…failure.

Trying to live an overcommitted life while also sharing the life with dang RA…I set myself up for that a lot.

The funny part is that prior to diagnosis, if I didn’t have time or didn’t want to do something or just simply found a better option, I didn’t give a rats ass about bailing. I remember thinking ‘screw the spin class. I work very hard. I deserve a night on the couch.’

I have various theories as to why I now am very concerned about multiple little rat booties but those don’t matter.

Because tonight I blew off the gym to go to the gym. More specifically, I blew off the whole working out part and instead plopped my bathing suit clad rear in the hot tub and then the steam room and then back to the hot tub. Taking away feelings of failure one fantastic jet on my back at a time!

If I could somehow find a way to navigate my day from a tub of hot jetted water, my joints would be happy, happy, happy! Alas, that could make sales presentations interesting.

Normally, I’d come home and be disappointed in myself but when I really thought about it, I really see no point. How am I failing when I’ve done something good for myself? Sure, it wasn’t cardio persay but it is still healthy and now I feel great!

Take It Back Tuesday: I’m taking back realistic expectations and the ability to make a healthy compromise.

What are you taking back?

Take It Back Tuesday!

Standard

In honor of Tuesday and to celebrate the excitement and sense of accomplishment we feel when we can ‘take things back’ from RA, I’m going to start writing about the things both large and small that I’m taking back into my control. I fully realize that there may be days where my biggest accomplishment may be just making it through the day but hey… let’s put it out there because it is what it is!

Without further adieu… my first Take It Back Tuesday is…I finally hung pictures and curtains in my bedroom.

Six months after I move in.

For six months, I’ve stood there looking at them lined up against the wall and thought of a variety of reasonable excuses. I’m too tired. I don’t feel comfortable on a ladder. I don’t feel comfortable on a ladder with a drill and hammer. It hurts my wrists to use a screwdriver repetitively.

You know the drill. See what I did there? Ha!

But my bedroom didn’t feel like home.

And you know what…after all those excuses, the ladder was fine, the tools weren’t heavy, the wrists are fine, and my room is almost the relaxing space I need it to be.

I always give myself less credit than i should with things such as this.

What are you taking back?

RA Spa Day!

Standard

I think it’s so important for us to unwind and unstress. For me, stress plays a huge part in flares or the absence thereof.

If finances were not an issue, I would get a massage everyday. I would get a facial every week. And I would sleep in a hammock on a tropical beach whilst being fanned by Channing Tatum in one of his Magic Mike get ups. Too explicit? Well, I didn’t specify which get up, did I? Because that’s between me and Channing.

At least once a week, I set aside time for an at home spa day. It’s quite simple, it’s FREE, and I can put on a movie so that Channing, Brad Pitt and James Franco can join me. Alas, never simultaneously. They’ve never done an ensemble piece.

Step one: take a long hot bath with Epsom salts. Great for the joints and for the psyche!

Step two: helloooo fluffy bath robe!

Step three: wash my face with my regular face wash.

Step four: Do a facial exfoliant. I prefer Clinique’s Seven Day Scrub cream that I usually steal from my mom’s Clinique bonus samples.

Step five: Make a piping hot cup of chamomile tea. Soak a clean washcloth in the tea, wring it out, and hold washcloth on my face to open my pores.

Step six: apply a deep cleaning mud mask. I use a $5 generic one I got at Target.

Step seven: sip the tea from step five while enjoying lounge time in fluffy robe from step two. (Variation of the five second rule…in theory, you used a clean washcloth earlier!)

Step eight: soak ankles or wrists in a bucket or pot of hot water with Epsom salts. This may be my favorite part- feels SO good on my joints.

Step nine: wipe off the mud mask

Step ten: crawl into bed, warm, peaceful and much comfier than you started.

Step eleven; fantastic dreams of Channing Tatum.

Give it a try: it’s very cheap and while it may sound silly, it is amazing!

Gratitude and Focus

Standard

I feel like I’ve lost track of this blog. Exactly a year ago, I said the same thing. It was because I wasn’t doing well. I was in a place where my job was physically, mentally, and spiritually destroying me. I was so frantic on a daily basis that I couldn’t even keep up with basic things. My power got cut off…I had the money but I didn’t even have the presence of mind to realize that it hasn’t been paid. There was also a litterbox situation that I will spare you the gory details on. Suffice it to say that it had been awhile and Molly made alternate arrangements.

All that to say that my silence was coming from a very desperate, disorganized, chaotic clusterfuck that certainly took its toll on my disease. If I can’t remember to pay my power bill, I’m certainly not able to be proactive and compliant about my health!

A year later and I’m silent again. BUT. My silence now is because I’m doing well. I’m busy, yes, but I’m in a job that challenges me to be even better than I ever thought I could be. A company that respects my personal time. Who would never DEMAND that I be available at 2am and 5am for clients and then report to the office with a smile at 8 for a 10 hr day.

I’m really trying to focus on me right now. I need hobbies. I need to try new things. I need to take care of old friendships and develop new ones. And I need to repair the damage the stress of the old job did to my body.

I’m working on Amanda 2.0 3.0 and she’s going to be one healthy, happy, hilarious gal!

I see my friends posting about gratitude this month for Thanksgiving.

I am so grateful for the space to be able to focus on me and to being able to find a better version of me. I’m grateful for a job and company that allows for not only space but tremendous professional growth. I’m grateful for the connections I’ve made here that have turned into real (well ok, Facebook…but Facebook is practically real now) friendships. And I’m grateful to have this platform to share it with you all.

That’s FOUR things! I’m ahead! Hells yeah! Grateful for that too! Funnier stuff to come soon!

Kayak FAIL

Standard

I’ll admit. I love pushing myself to do things I think I won’t be able to do but today, I went a bit too far.

Our company had us all down to South Carolina for a team building kayak trip. A three hour several mile trek through creeks that are part of the Congaree River system.

I’ll be the first to tell you that I love kayaking, whitewater rafting and basically anything to do with water. I’ll also admit that most of my kayaking experience has been on deep water lakes and rivers, usually with a cooler full of beer.

Nothing like floating on a nice day drinking a cold one and getting a little tipsy with your friends!

Unfortunately, coolers of beer are not synonymous with corporate outings.

My first issue is what the heck do I wear! With my friends, I wear a swimsuit and shorts. Professionally, I can’t put myself in situations where I may flash coworkers so that was out. I finally decided on gym shorts and an dry fit shirt. Thank you Santa Claus for all that REI gear. I hope you are just as vigilant with your REI points as my dad is!

I’m used to putting in directly on the water. IE I wade in, climb in, and go. We put in on a bank with water up to the guides chest so I had to carefully navigate roots, aim my butt into the seat and then swing my legs in. That’s a whole lotta coordination for this gal with RA!

I should also mention that I elected for a single rather than tandem boat. Why? Because I have a bad temper and if I went into the water, I wanted to make damn well sure that there was nobody I could yell at besides me. Unfortunately, it also meant that when I got tired, there was nobody who could pick up the slack. More on that later.

The difference between deep water and creeks are the presence of close to the surface trees and logs you can get stuck in as well as creepy snake habitat brush. Ick.

I got caught in the middle of the group and kept having to paddle twice as hard to not get into snake land and I almost fell in because I was completely stuck on a log and got rammed.

An hour and a half in, my wrists started hurting and I slowed down. About this time, I had to aim to paddle into a certain spot to go underneath a low hanging tree so not to clothesline myself. I paddled left hard several times and started to slide underneath perfectly. One more hard left dig and WHAM. The other part of my paddle hit the tree and rebounded into my face. I hit my right eye and lip HARD and almost fell off.

At that point, things changed. I had focused very hard on saying EEK rather than my usual favorite expletive. You know, trying to keep it professional even though at that point, I had half a tree in my boat, leaves in my hair and dirt all over my face. But at that time, my eeks disappeared and I fear our HR Manager may have even heard me utter something along the lines of ‘F$&! you Mother F$)()$&’ to said tree.

Then I decided it was time for me to simply stop talking.

I kept trying to give my wrists breaks which slowed me down. Then I got mad. I hated trees. I hated logs. I hated that damn snake environment. And even though the guide was hilarious and very knowledgeable, I needed him to stop for the love of God trying to pump me up.

I knew where we were on the course and I knew I could make it if I just focused on getting there. Talking to me only pulled me out of that and made me remember the wrist situation.

Finally we reached the end.

I very gracefully climbed out onto the bank. And by very gracefully picture Chunk from Goonies when he…well, when he did anything. Hey you guyssss!

I then had to drive 4 hours home. Smelly, swampy and achey.

I’m not saying it wasn’t a good time. It was. It was also beautiful! But it was exhausting and crazy hard and I admit that I did too much.

Being able to let other people help you is something I’ve never been good at. A tandem boat would’ve taken half of the energy and half of the stress off my wrists. And accepting a partner here wouldn’t have been admitting defeat. But I’ve simply got to learn to loosen up that control.

Hot, hot, HOT yoga

Standard

The RA suppressed athlete in me has been morbidly fascinated with Bikram yoga for quite awhile. I’ve read a fair amount that says its good for RA patients. I’ve also read that it isn’t so I checked with my doctor beforehand.

I’ve done a ton of crazy workouts in my life…boot camps, running repeated wind sprints, kick boxing. I like doing things that challenge me, things that other people think are slightly nuts, and oftentimes things I think I can’t do myself.

Especially since being diagnosed, seeing that I’m stronger than I thought I was is an accomplishment.

But y’all…I’m not hot yoga strong. Yet.

I’ve done a lot of yoga in my day- faster flow classes, deep stretch and restorative, and even one time with a yoga wall. Yoga walls are fun but the inner super klutz in me worried I’d screw it up and accidentally hang myself.

To prepare, I read the how to get ready for your first class. And in true AJ fashion, I proceeded to completely disregard with the whole ‘whatever, I do this all the time’ attitude that usually yields disastrous results.

WHEN will I learn that every time I think that, I need to immediately FREEZE, hold statue still and immediately stop doing what I’m about to do? Or not do in this case.

Step one: hydrate well before class. Oh yeah. I was WELL hydrated. I had like five cups of coffee. Hydration= check.

Step two: eat a good meal several hours before class. Well, who needs food when your body is running so smoothly on all of that glorious caffeine? I am a lean, mean caffeinated machine! I did supplement with some Jolly Ranchers…but only the blue and red ones that aren’t watermelon.

I met my friend and together we walked into the studio. They gave us some sort of new student speech but I was distracted by the super hot guy who is very much my type checking in. How YOU doin? I’m about to dominate this class and you will be so impressed that of course you can have my number.

Walking into the actual room was my first clue that I may be in for a rough time. The classroom was already at the requisite 105 degrees. Yep, you read that right. 105. Balmy. But it was made better when hot guy walked in shirtless.

We began with deep breathing exercises. It was so hot that I was lightheaded and nauseous after the second set. A quick glance over at my friend still hanging strong and I knew that I couldn’t let her beat me! And I had to stay strong for hot guy.

More poses. The dude two rows in front of me is literally slinging sweat like a faucet. He is also wearing nothing but very short boxer briefs. Who does a yoga class in nothing but their skivvies?

Five minutes later, I understand the skivvies. I am a modest gal and I really think everyone would’ve understood if I suddenly ripped off all my clothes. I really wanted to. It was effing miserable. But I also would like the option of returning to that studio and didnt want hot guy to see that I need to lose 10 pounds so I did not become the naked newbie at hot yoga class.

Several more poses and I notice that there are ceiling fans in the room. That’s just a tease. They were on, sure, but they were not moving any cool air. They were, however, moving air full of everyone’s stank. STANK.

The instructor said at some point that if we were new and not feeling great, we could ‘take a knee.’ I didn’t take a knee; I took two buttcheeks. On the floor. I also took a wall. Let me paint the picture for you: I was not just sitting and dripping sweat on my mat. I was sitting propped against the back wall TRYING NOT TO DIE. For real. Living another hour was suddenly more important than impressing hot guy.

I sat there, soaking wet and breathing in hot stank, until they moved to the floor. I joined back in and spent quite awhile examining my feet. Did you know that your toes can sweat actual beads of sweat? They totally can! Also, sweat infused with mascara is quite painful on the eyes.

My friend and I literally sat there, occasionally looking at each other to communicate WTF! OMG! We should’ve just gotten drinks after work.

We were so miserable that we didn’t even giggle when the dude in front of us started farting. Nope. We were just thankful for air movement.

We finished the class and I quickly got in my car so that hot guy wouldn’t see that all my mascara has left streaks down my whole face. Have you seen vampires cry blood on True Blood? Yep. Now picture that on me in black. I also knew that my hair was saturated soaking wet like I’d gotten out of the shower and that the substance making it so wet was my own filth. Nope, he didn’t need to see that either.

The poses themselves were nothing new to me but the heat was crazy. I was nervous because heat can make me nauseous which did happen but I didn’t throw up. I will admit that the heat made moving into poses much easier on my joints. I will also admit that I’m still feeling those benefits today.

I’m afraid I may have to go back. Next time: more hydration, less clothing.

Advocates For Arthritis

Standard

20120829-210729.jpg

Me, Tiffany and Tami- Advocates For Arthritis 2010

An event that is near and dear to me, the American College of Rheumatology’s annual Advocates For Arthritis, will be held Sept 10-11th in DC. I am participating this year as a Virtual Advocate so get excited to read future posts detailing efforts to help determine and raise awareness of legislation that affects our whole patient community!

I have participated in person twice and I cannot find words to describe how important and how empowering this is as a patient. But you know me, I’m certainly going to try!

I don’t think many patients understand the importance of our role in the political process that takes place. Sure, politicians receive information and speak to doctors and organizations who say that xyz affects this community in xyz way. They hear this all day long. But imagine the IMPACT that is made when a doctor says that and you, as a patient, can supplement with a personal story.

True story: my very first appointment at my very first Fly In was with the Healthcare Legislative Aide for an NC Representative who, in very small world fashion, was one of my very best friends from childhood. Do you think she remembered and communicated the reality of access to care and cost of medications with the cost of both being increased disability? Do you think it made an impact in her hearing and seeing her former competitive dance team buddy limp in with swollen hands as to the critical importance of these bills to our community?

Politics is personal.

I am excited to bring you all on this journey with me and the other Virtual Advocates. I invite you to check them out at here.

I will be posting more soon both here and on my Facebook page. By all means, ask questions, feel free to share and repost, and join in if you’re so inclined!

Pills, pills, pills!

Standard

…what I sing to myself every night when I have to take them. Either to the tune of Destiny’s Child song “Bills, bills, bills” or Lady Gaga’s “Boys, boys, boys.” Just depends on my mood and sometimes I even throw in some hip action.

I tell you this because my routine has changed yet again. I just started injectable Orencia rather than infusions. Sure, I miss all the VIP salon treatment in the infusion center. Doing fun things like completely commandeering the yearly surveys on how to make the infusion room better and making sure every patient there that morning wrote down the following requests: Keurig with coffee selection! Pastry assortments! Thicker blankets!! Punctuated just like that…except I included a well placed ‘FOR THE LOVE OF GOD’ after my own thicker blanket request.

Sweet, sweet rebellion. Why do I get the feeling that I may not be missed?

Anywho. So I had to learn how to give myself a real shot and not an epipen shot. Hilarity ensues. As I read through the directions with the nurse, I think she was a tad concerned with my hand gestures. I mean, it told me to hold it like a dart and stab it into my leg. So I was getting ready to do just that when she intervened.

Oh. So you just set the needle on the leg and gently push? You don’t start with your hand a good three feet above your leg, aiming a needle in an ominous direction? And to confirm, there is no need for speed or force?

Well. That’s kinda boring. I was gonna go all Pulp Fiction on my thigh up in here. 

I did my first one unassisted recently and it was just as uneventful.

I think it’s time for a new song. And maybe some spirit fingers.