Lady Gaga Concert

This is where you’ll start to figure out why I’ve been so freaking tired the past couple of weeks.

That Saturday morning and afternoon that I went whitewater rafting would be the same Saturday of the Saturday night I went to a Lady Gaga concert.  And the very next day…that Sunday I would fly to DC for the ACR’s Advocates for Arthritis.  But I’ll get to that in my next post!

After rafting, I had a drink until my legs stopped shaking, and then I ran to my car.  I had two friends coming in from out of town and had some serious prettying up to do!

My two friends and I share a birthday week.  When we found out that Lady Gaga would be in town that very week, we knew it wasn’t just a coincidence.  Nope, it meant to be that we were supposed to get all glammed up, have an expensive dinner, and dance our Virgo booties off!   My friend Hot Mama (she’s newly pregnant) had me call the local MAC counter to set official ‘glam’ appointments.  I was told that, with the purchase of eyelashes, they would finish our eye makeup for us and that no appointments were necessary.  Even better!

So I showered, slipped on a cute dress, selected fun jewelry, and took a chance with some fun heels.  We jumped in Hot Mama’s car (pregnant friends make great dd’s…just saying) and headed to the mall with a full hour to spare before our dinner reservations.

“I’m sorry.  We’re booked for the night.”  Apparently, appointments WERE necessary.  Thank you so much, MAC counter at Belk at South Park Mall.  Because of you, I got to eat Taco Bell in the car.  Also, I now wear Bobbi Brown.  They were more than able to accommodate us and did a great job making us look fab. Go Bobbi Brown!

Momentary roadblock overcame and the three of us were off to the concert venue.

I should mention hear that Hot Mama’s husband made fun of us for dressing up for a concert.  I believe the verbage he used was ‘nobody else is going to be dressed like that.’  And he was right.  The moment we stepped out of the parking garage and joined the crowds moving towards the arena, it was quite evident that nobody else was ‘dressed like that.’  Nope, I saw very few slinky party dresses.  But I did see all kinds of pleather, police caution tape, black makeup tears, angel wings, and several hard core girls walking around in bras with their hair in Coke cans.

Wearing a T-Bone tiara someone threw on stage.

The concert was AMAZING.  I should mention that she’s one of my favorites for several reasons.  First, she actually can sing, dance, and play instruments live.  I mean, really, how many people can you actually say that about?  Second, I believe she herself said it best with ‘if I ask you to pay what you’re paying for a ticket, then I’m not going to lip sing a single word.’ Third, she’s passionate.  Like crazy passionate.  She loves her fans.  Period.  She knows what she believes. Period.  You may not agree with everything but you have to respect where it comes from.

The little speck in the middle is her setting the piano on fire.  You  can see her also on the jumbotron.

Favorite moments:

-She opened with my favorite song- Dance in the Dark.

– She played Speechless on a stage completely by herself with a grand piano.  And then she set the piano on fire.

-The song Boys, Boys, Boys.  I do not know why but that song never ceases to make me laugh.  It reminds me of college.  Sorry mom.

-Watching my other friend, let’s call her Catholic, squirm (but secretly love) when she came out wearing a mini skirted clear pleather nun’s habit with bandaids covering things that needed to be covered.

-Someone threw a Barbie Doll on stage and she picked her up and bit her head off because “I played with Barbie’s growing up and they were a great source of insecurity.  This is what happens to Barbies on my stage.”  AMEN.

She closed with Bad Romance and it was over too fast!  We walked up to this martini bar and had a drink while we waited for traffic to subside.  This would be immediately after the mini adventure known as I have to pee right now, let’s run into the bus station really fast!  NOT going to do that ever again.

It was a LONG day and when I finally got home and got in bed, I was SORE. Like have to get out of bed and get a muscle relaxer sore.

Hot Mama, me, and Catholic

I wouldn’t change a thing about that whole day. Days like this that keep me sane.  I can always justify feeling a little crummy for a couple of days to have experiences like these.

Hiking and Horses

One of two lengthier updates so bear with me!  Lots going on! Let’s start with the Labor Day update which was supposed to accompany the pictures I posted closer to actual Labor Day.

It was a great mountain vacation- great friends, great food, great hot tub that got completely overloaded with too many people, and overcoming some fears to do some activities that I used to do quite a lot.

Exhibit A: Hiking

Ok, ok, ok…so I don’t really CARE for hiking too much.  Growing up, my dad’s idea of hiking was ‘let’s carry all sorts of crap in heavy backpacks and spend a week living like our ancestors did off of the land.’  He’d always try to con me into it by mentioning how much I loved the computer game Oregon Trail.  But no matter how cool it would be to walk into a store and say ‘I’d like to buy $1400 worth of bullets…and an axle,” I can’t forget that all my Oregon Trail people always died of dysentary.

Anyways.

So I’d compromise with him for this trail near our house. Not too hilly, not too flat, not many roots,we’d catch up, he’d get to be outside, I’d get to not die of dysentary, and an hour later, on the way home we’d sometimes get ice cream.

And then RA happened and I haven’t done it since.

I was nervous on Saturday when my friends announced that the plans for the day included an almost 2 mile hike.  For the record, I’ve done multiple 5K’s since this happened.  Would I give a 2 mile walk in my neighborhood a second thought? No. I’d be confident at this  distance on any flat terrain without roots to watch for.  But this particular trail is very uphill, very uneven ground, and lots of roots. I had visions of tripping on a root and falling forward to catch myself with my worthless hands, and really getting hurt.  The area is also a tad bit isolated and I didn’t feel like it had a good ‘escape route.’  Donner Pass much?

You don’t know you can’t do this until you try it and can’t do it. You have no basis for this whole root anxiety especially because your biggest guy friend is on the trip and you can make him walk with you and catch you if you need it. You probably won’t need it. If something happens you know your friends won’t have to kill you and use you for food because it’s not even winter yet. If you successfully complete it, you can buy those black and pink plaid rain boots you’re having hard time finding a reason to justify buying.

I am proud new owner of black and pink rain boots. And for the record,  nothing hurt afterward except my butt = not a joint.

Exhibit B:  Horseback Riding

I grew up riding horses.  LOVE it.  One of my favorite family vacations growing up was a horseback trip around the Grand Tetons.  If you’ve ever even seen pictures of how beautiful it is out there, just imagine how beautiful riding through them on the back of a horse is.  Surreal.

I quit riding when I hit high school for dancing.  I continued dancing in college- with boys at parties. The closest I came to horseback riding in college was this one time I contemplated riding a mechanical bull in a country line dance bar outside of Knoxville.  For the record, I did not.

So when I found out that a couple of the girls on the trip wanted to go riding, I was PUMPED.  I had visions of myself yet again flying through the mountains on this beautiful horse in beautiful crisp early fall weather.  I was GIDDY.  I googled several places, narrowed down the list, and called the final contenders.  I emailed the information to the interested parties.

And then I remembered the closest I ever came to getting hurt on a horse.  I was really little and I somehow cued my horse to canter (similar to a gallop).  I wasn’t expecting it and I almost fell off.  And then I remembered how my friend Lisa fell off her horse when we were 12- she hurt her back and broke her nose.

I went ahead and paid my deposit to reserve the horse but didn’t commit to doing it until I got there and saw that it was a slow, guided ride on a very broken in trail.  I was a tad disappointed in that- I wanted to RUN- but even with the slow pace, I was really nervous the first few times the horse lurched.

Exhibit C:  Getting Tricked Into Hiking A Longer and Hillier Distance

With two successes under my belt, I felt more confidant.  So when we were on our way back and a friend asked if I was ok with stopping to do a hike along the Blue Ridge Parkway, I was immediately game. (Graveyard Fields for those who may be interested.)  I was even more game when I inquired as to the distance and was told less than a mile.

Yes!  I LOVE hiking!

We headed down the paved walkway to the Falls which were indeed less than a mile from the car.  They were beautiful- really cool looking rocks- and we all took our shoes off and soaked our feet in the freezing cold water.

I walked back up the rock face to the path when I noticed the group heading off in another direction.  I followed suit without question but realized quickly that a) the paved path turns to rocks and roots very quickly and b) this is all uphill. When I saw this, I again directed the distance question to my friend leading the pack.  He responded with “4 miles” and apparently I made a face.  And then he said it:

“I mean, just how bad are your feet flaring right now?  You did yesterday’s hike fine. So do they hurt or don’t they?”

OH NO YOU DIDN’T.

Now keep in mind that this is someone that I hang out with a lot and for the most part really enjoy hanging out with. He obviously knows about the RA but obviously doesn’t understand much about how symptoms can change.  In that moment, I really really really disliked him. But I get it- he wanted to do the hike and knew that if I said I couldn’t do it, most of the people we were with would probably join me back at the car. And that is how I decided that come hell or high water, I was going to finish the damn hike.

I disliked him even more as he began showboating for the group.  He called it stunt hiking- running up the trail and jumping over roots ninja style.  It was really annoying when all I’m trying to do is not fall on really steep and really uneven terrain.

I felt much better when he face planted while showing off his ‘root double axel.’

The whole ordeal very clearly illustrated the principle that one of friends (who is a personal trainer) believes: men are overly confident in their athletic ability while women doubt their athletic ability. Especially women with RA. 🙂

Coming up next: white water rafting, Lady Gaga concert, and the ACR Advocates for Arthritis in Washington DC.

I need to feel my age again!

There are so many things I’d rather be doing this summer.  SO MANY.  Like traveling, drinking and chatting it up with hot guys while scantily clad on boats, briefly wearing killer heels outside a club before I switch them for the flip flops in my purse, and that whole acting like I’m 30 instead of 90 kind of thing.

But no.  Nope.  Instead I’m recovering from the flare I am now calling How To Spend A Ridiculous Amount Of Money Very Quickly And Have Absolutely Nothing Whatsoever Tangible To Show For It At All To Include Incriminating Pictures Or Embarrassing Stories: Part III.

NO BOAT DANCING HERE.

Sigh.

Ok, so maybe I’m a little bitter.  I’ve been really tired the past few days.  And then last night, my friend and I went to get yogurt at a place up the street from me.  And we saw these three girls walk by, dressed to impress, and one of them dared to give both of us a judgemental look.

OH HECK NO.

Sure, it was a Saturday night and sure, we were out in public with both of us wearing gym shorts and tank tops but you know what?  WE DIDN’T LOOK LIKE B LIST STRIPPERS.  (If you’re interested in a concise definition of a B-List Stripper, it is a stripper who is scheduled to work daytime hours.  Just sayin.)

But after I got over how angry it made me and after I successfully used Austin Powers moves to navigate my car out of the itsy bitsy parking space that was made more complicated thanks to the brand new Mercedes on the right that only gave me 7 inches for margin of error, I realized that part of the reason I was so angry was because I miss being that girl who gets dressed up every Saturday night.

I hate resting.  I hate taking medication.  I hate that my friends invite me to things and then react with complete and utter shock when I actually show up.

I don’t necessarily want to be wild and crazy.  For the record, I got the bulk of my demons out in early college.  But you know what…I would just like the OPTION of being wild and crazy if I felt like it.  Hey Amanda, want to conduct some extensive experimentation with illicit drugs?  Why yes, I’d love to. Not really.  Not ever actually.  But you know what?  If someone were to ask me that, I’d like to at least feel that I had the choice to say YES. Maybe I’m weird. 🙂 But feeling like I don’t even have the option…sucks.

I feel like I’m missing out on so much. I moved here a year ago and while I have wonderful friends here so far, there are big chunks of time where I don’t do anything with them.  I’m terrified: out of sight, out of mind, right? And I don’t even add those periods of time to the period of time I spent when I was newly diagnosed- isolating myself from everyone and just being pissed off at the world.  It was QUITE healthy.

I miss being myself.  I miss feeling like myself.  I miss looking like myself.

Except I never looked like a stripper. Thank you very much.

Blah…

You know the drill…

You’re starting to feel better.  You sleep in gloriously late on a Saturday morning and wake up to think about a date you had the night before. No, he’s not Mr. Right.  Hell, he’s not even a contender for Mr. Right Now.  But it was nice to have a good looking guy WANT to buy you a glass of wine and listen to you prattle on about mundane details of your life.  Except he’s really really boring.  So you sigh, mentally file him back in the Rolodex, roll over, and sleep for another half an hour.

You get up and you feel no better but also no worse than usual.  You’re okay with that.  You proceed to spend the next 3 hours laying on the couch watching movies and playing online.  You finally get off your butt to go do one of your most favorite things in the world: MASSAGE!!!!

You spend an hour getting pampered and relaxed.  An added bonus is that thunderstorm that comes along in the middle of it- thunder and the sound of rain always relaxes you so this just makes awesome more awesome.  It even makes you forget that, as always, you really need to shave your legs.

You leave the massage and hit up two more favorites: PEDICURE!  SHOPPING!  Afterwards, you pick up some junk food in preparation for movie night at your place with friends.  You’re actually having a really good day.

And then something (usually stupid and usually trivial) happens that reminds you about your RA and it completely ruins the rest of your day.

On Friday, it was the receptionist at my rheumatologist’s office who pissed me off so much that I found myself mad at my rheumatologist, which then made me mad at my old rheumatologist in SC, which then made me hate rheumatology in general.  At that point in time, I was suddenly morally obligated to ABANDON THE PATRONAGE OF ALL RHEUMATOLOGISTS EVERYWHERE so I called a naturopathic doctor I’m trying to get in with only to realize it was completely out of my budget so I then hated all naturopathic doctors too, and then I started thinking about insurance companies…

It is a vicious cycle that only makes me feel like I’ve lost something all over again.

Oh yes, and psycho.

On Saturday, it was seeing people running in my neighborhood.  I know that most people see people running and think “oh, they’re being so healthy.”  But I sometimes look at them and think they’re taunting me.  Stupid runners with your stupid healthy joints and your annoying ipods. And you- YOU- in the pink shorts with the blond ponytail and the HOT shirtless guy…I despise you.  I bet you have those fabulous heels I drooled over today.  You know, the ones that I am physically incapable of wearing.  IT IS SO NOT FAIR- THOSE SHOULD BE MY SHOES.

Like I said, psycho.  P-S-Y-C-H-O.

For the record, I did not verbalize these thoughts.

I continually come back to this overwhelming feeling about just how unfair this whole disease is for me.  For all of us.  Even when I’m feeling better, even when I have a million things going on that are positive, I just can’t shake it.

A little Labor Day post on my labors

If I’d known ten years ago that I would have rheumatoid arthritis today, oh the things I would do!  I would spend a small fortune on couture 5 inch hooker heels and prance around in them EVERYDAY until I started having problems.  Going to the carwash?  Awesome- silver 4 inch Loubatin’s just to make a spectacle.  Church?  How about some conservative 5 inch black polka dotted Jimmy Choo’s?  Going dancing with friends?  Prada, Prada, Prada! Doesn’t that sound magnificent?!? Yes, these are the things that this 29 year old RA patient who has, at times, been accused of being slightly vain fantasizes about.

 Then there are things that I chose for myself before this whole RA thing that I’m clinging to like a madwoman.  Things that are very important and self-defining; things that I can’t just let go of like a pair of shoes.  Things that if RA messes with, I say “sorry, dude, these are non-negotiable.”  Running would be one of these- I still do very infrequently- but relish the moments when I can.  My job would be another one of these things.

I love that my job is very fast-paced, stressful, and completely the result of MY efforts.  In today’s environment, I have to triple my activities to yield 50% of what I’ve produced in years past.  To which I say:  Awesome. Bring it.  Rock on, Type A.

I do not love that my RA, when in flare mode, sometimes does not work well with a job that is very fast-paced, stressful, and completely reliant on MY efforts.  In a flare environment which is generally twice a year, I have to sometimes cut back on my activities which (somewhat embarassingly) still yields 50% of what I’ve produced in years past. To which I say: Suck it, you traitor. Leave me alone.

I know, I know.  You can say it.   It’s weird as heck that I am more ok with the whole financial debaucle of late making me have to work harder than I am with the whole RA/flare debaucle of late making me have to chill out some.  

If I’d known ten years ago about my RA, would I have chosen the same career path?  Most likely, yes. But in all honesty, IF I’d known, I probably would’ve tried to go to med school.  I feel like a part time rheumatologist most of the time anyway, why not get some initials to match?

My favorite thing about warm weather

Because, for some reason, they feel so darn good on my aching arthritic feet.

It wasn’t me.

The only way I can make myself not feel dumb about what I did this weekend is to tell you what I *didnt do.*

– I’ve never had a bad habit of pushing my body to things that maybe it’s not quite prepared to do arthritis wise.  

-On Saturday, I certainly didn’t go out with friends.  

– In preparing for the Saturday night where I DIDN’T hang out with friends, I definitely didn’t jettison my comfy yet still attractive black shoes for 4 inch boots.  I would NEVER do this because my doctor told me I could really hurt myself by putting all my body weight on the erosions in the balls of my feet.

– I certainly didn’t shake my booty on the dance floor in 4 inch instruments of torture  black boots until 3 am.

Because I’m so much smarter than that, right?

To bring things somewhat current

So, I had every intention of getting all this background story posted in like 2 days. But, thanks to our economy and some serious work drama, I got a tad bit sidetracked.  Sigh…

I guess I stayed on the same treatment plan for a year with some reduction in symptoms but not much.  I ended up having a pretty serious falling out with my rheumatologist, mainly due to the fact that his social skills never improved and the last appt when he walked in, didn’t even look at me, and asked me how my elbows were doing.  “Elbows?  ELBOWS? I wasn’t aware there was a problem with my elbows.”  That was the one time he actually made eye contact with me.  Perhaps I should’ve let him examine my middle finger, it started itching at that moment.

I found a new rheumatologist who is wonderful.  At my first appointment, she spent an hour with me.  She agreed that our end goal was to get me running again (which I am!) and to get me back into the pretty shoes I lust over (which I can wear in moderation if they’re not too high.)  She was pretty upset with my old doctor- he never ran certain blood tests that give indicators on how aggressive RA is and basically let me lose a year in treatment time by continuing a course of medication that wasn’t working.

I’m currently on a low dose of mtx (which I’m not thrilled with but I’ll do for now), sulfazine (basically aspirin and a low dose antibiotic), and Humira.  It’s going okay thus far so let’s all knock on wood!