Author Archives: AllFlaredUp

RA Spa Day!

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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

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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

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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

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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

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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!

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…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.

Sweet dreams are made of this!

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Kate Moss famously said ‘nothing tastes as good as skinny feels.’

Kate doesn’t have RA. She has also never had fried pickles.

If she did, she would’ve said ‘nothing tastes as good as sleeping feels.’

I realized recently that I’ve had a good, strong nightcap every night for over a year. It was a stress thing, one of the few ways I could relax in my old environment.

I also figured out that certain types of alcohol increase my joint pain, namely beers and the higher tannin wines.

An unfortunate finding for the cabernat lover in me!

It would explain the fatigue: getting half lit on something that increases joint pain and stumbling into bed probably doesn’t yield the most restful sleep.

I know it sounds stupid; I knew it wasn’t good for me but trust me when I say my old employer was toxic in many ways. 

I decided to experiment and dry out for a month. Joint pain reduced and I’m sleeping like a baby!

Wow. That simple to feel that much better.

It’s motivating me to make some even bigger changes.

But first…a good eight hour date in my bed with my comfy sweats and a cuddly critter!

2 steps forward, 12 steps up

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New town, new job, new doctors, new condo…heck, even a new car!

To say I have a lot to wrap my head around right now is a bit of an understatement.

I moved with the best of intentions. I was going to jump in, immediately saturate the marketplace with my awesome sales prowess, sell double my goal, and be the first newbie to ever be invited to the awards trip next year. One week. All inclusive for myself and a guest. Somewhere tropical.

Y’all, I can really see myself there.

I was going to hire a trainer and take control of reshaping my body back to health. And back to a size 6. So I’d look HOT on that beach.

I was going to immediately unpack, pictures on the wall, and keep the entire place immaculate. 

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I mean, how pretty are those stairs? All 12 of them.  (Hold on to that fact, it becomes more important in a moment.)

In short, I was going to either table or dominate everything RA related and get my sh*t together.

I’ve been here a month now. Saleswise, I’m doing well but it is abundantly clear that the only tropical vacay I’ll have this year will be courtesy of the Travel Channel.

I’ve worked out with the trainer twice. I’ve also cancelled twice- once because I just didn’t feel like it and once because I wanted to watch Revenge on my dvr. And then last weekend, I pushed too hard and will find out tomorrow if my ankle is indeed fractured.

A non RA injury. Woot! But 12 stairs to my bed. Un-woot!

Oh yeah. And that whole unpack and keep crap clean? (Cue hysterical laughter.)

But it’s all good. For the first time in a long time, I’ve let myself dream and have goals. Sure, those goals were not necessarily attainable but man, are they fun to think about and to be able to try around people who don’t know you as someone who sometimes struggles.

It’s certainly a jumping (or sliding on my butt down stairs) off point. And it’s been a very long time since I’ve felt the freedom to even try to change.

Being anonymous can be so empowering.

Also empowering? Who attended WAAD last week? For those of you unfamiliar, this was a virtual conference hosted by IAAM to spearhead awareness of autoimmune arthritis. While I find comfort in dreaming big in my anonymity, I’m so thankful for this awareness that will hopefully make it so that patients like me don’t have to feel anonymous to dream big.

Feet.

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I was in a discussion with q friend recently where she stated that she believed her cheerleading background to be more.athletic than my 12 years of classical ballet training with a nationally known instructor.

I fought that argument with 2 words: pointe shoes.

I was obsessed with dancing en pointe from an early age. It was so beautiful.

When they finally told me I was ready, I was so excited that I made my mom take me shopping that day.

At my first real class en pointe, I beamed with pride because of all us beginners, she called me out for having the best feet.

Of course I did. I practiced the whole summer before on my own.

For those of you unfamiliar with what I’m talking about, pointe shoes are ballet slippers with wooden toes that allow you to truly dance on the tips of your toes. You’re not supposed to (or allowed to, at least by my old teacher) do this until you’re around 12 years old, your feet have finished growing, and you’ve demonstrated that they’re strong enough to handle it through proper technique.

In other words, it was kind of a big deal.

It was also incredibly hard work. To even wear the shoes, I had to wrap my toes in gauze, pull tights over it, and put plastic padding in them. I got crap from other girls who didn’t use the plastic. But I also saw them lose toenails and that was something I never had to deal with.

My most favorite moment was dancing in the dream ballet of a performance of Oklahoma. Picture a flowing white dress, dry ice, and beautiful music.

Pique turn, pique turn, pique, pique, pique turn, arabesque.

It was hard, yes, but it was just so beautiful.

I was so happy.

Fast forward.

Last year, I saw a production of Oklahoma with the original Agnes de Milled choreography.

God, it was beautiful.

And then I remembered my feet.

I have a lot of work to do, yes.

But since being diagnosed with RA, I’ve ran many 5K’s. I’ve hiked. I’ve done a ropes course.  I’ve conquered fears and anxieties and walked myself out of toxic relationships, bad jobs, and into new situations and cities that are pretty scary to me.

But even in failure, my feet have been unfailing.

I’ve always gotten myself to better, more beautiful places.

So yeah, RA and all… I’m pretty damn proud of these feet.