Tag Archives: Trying to be normal

Where Feeling Normal Makes Me Look Weird

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I’ve been out of town for the last two weeks and while I should write a post detailing the absolute thrilling joy that traveling across the country with RA can be, I thought I’d devote a little time to what I did yesterday instead as it reminded me of something that I think we all sometimes forget.

I totally enjoy being sick now when it has nothing to do with RA.  Weird, right?

I’ve been battling a cold that has settled into my sinuses for over a week now and it’s been glorious.

I’m serious, folks!

I’m sick, yes. I’m coughing.  I’m sneezing.  I’m nauseous and even threw up once.  I’m dizzy.  I’m exhausted.

BUT IT’S A NORMAL COLD! THAT’S TURNING INTO A NORMAL SINUS INFECTION!  THAT RESPONDS TO NORMAL MEDICATION!

I went to the doctor the other day and there was no scratching of the head in confusion over what’s going on with me.  I went to the pharmacy to fill my prescription and there was no pharmacist dying to talk to me about crazy side effects OR giving me the pitying why is she on that look. And OH MY GOD, normal illnesses have NORMAL CO-PAYS!  Oh how I miss those! To think that I got to go to a pharmacy and for once, it did not make my bank account cry.  HAPPY. DANCE. I told my friends what was going on; they all nodded in true understanding and we shared war stories.

And then I did something very unlike me.

I took yesterday off.  I totally called out sick.  I NEVER do that.  Heck, I rarely ever take vacations!  And the kicker…my Blackberry was down most of the day so not only could I not work on my couch but NOBODY COULD CALL ME WITH DUMB QUESTIONS.

I had a wonderful, albeit a stuffy nosed, day in pajamas, glasses, and no makeup.  There was no cooking- I broke diet and even ordered a pizza. I watched a movie in bed with my furchild. I did a moisturizing mask for my face. I did my eyebrows (I now have two again, it was getting bad!), AND I used my new paraffin wax treatment kit and pampered my hands and feet.

I still don’t feel great…but isn’t it nice…yet weird…the ways in which we sometimes can feel normal?

Lady Gaga Concert

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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.

Whitewater Rafting

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Two weekends ago, I went whitewater rafting with friends.  And oh-my-goodness was that a whole lot of fun but also not the best decision I’ve ever made in my life considering that I need to protect my joints.

Prior to our trip, we had to sign the necessary waivers and listen to a safety talk given by our raft guide.  It sounds pretty routine but that safety talk was one of the funniest things I’ve ever sat through, mainly because our raft (who used to legitimately be a crackhead but has gotten his life together) was a dead ringer for Spiccoli and even funnier.  Highlights of  the safety talk included what you should do ‘in the event that you exit the raft in order to take your own personal rafting trip in your life jacket.’  Oh my god.

I realized as we made our way to the boats that hey, you’re actually getting ready to do this for real!  And even though we were on a manmade course that was built to be safe (shallow, no undercut rocks, lifeguards, eddys made so that they protected you from the current if you happened to wash into one on your own ‘personal rafting trip courtesy of your life jacket’), it only then dawned on me that hey, you could still get hurt here.

So, I chose a seat in the back of the boat right in front of the raft guide and hoped for the best.

Before heading out into the channel, we practiced paddling as well as ‘getting down’ when the guide told us to- this was what we were to do whenever he yelled get down which he said would be in most of the larger rapids and involved just that- sitting in the bottom of the raft, leaning to the middle, and holding your paddle straight up in the air so that you wouldn’t clock anyone in the head.

The first few strokes were great.  We approached our first rapid and all of a sudden I hear, “get down!”  I quickly slid to the bottom of the boat as we dropped down about 2 feet.  The water splashed up in the boat and sent my gym shorts and underwear…um…up.  I had to quickly right the clothes situation before getting back up on my seat.  Getting back up into the seat with creaky RA knees when there’s water everywhere was hard.  I found  that I had better traction if I hooked my foot underneath the seat in front of me- I didn’t slide as much and ironically, this would come in quite handy in just a few minutes.

On the second rapid, we lost one of the people in the front of the boat. No worries, she was fine and we pulled her back in quickly.  On the third rapid, I almost lost a contact.  We finished that channel and rode the conveyor belt back up and did a second time.  Then we moved on to the harder channel.

Now, I had some apprehension going into this.  One of my favorite pastimes is sitting at this particular rapid and watching people bite it.  So I knew that was a possibility.  Paddling towards it, all I wanted to do was say hey, just drop me off and do it without me, but I had no time.

We did the first few rapids perfectly.  As we got closer to the spot I was worried about, I heard our raft guide yell ‘get down’ again.  I quickly complied.  We went down the drop, the raft dipped down in my side at the bottom, my friend on my right slammed into me, and I fell out of the raft.  Kind of.  Remember that I had my feet hooked!  So I am hanging out of the side of this boat in perfect sit-up position surrounded by rocks on all sides.  I remember thinking that I know I need to protect my hands and my neck but all I could think about was the fact that EVERYONE CAN SEE MY BUTT RIGHT NOW.  The raft guide stood up in the rapid, grabbed my life packet by the shoulders, and yanked me back in.

We did  the same channel one more time and I managed to stay in.  Then it was over.  I was SO sore afterwards- you know how we have a hard time with stiffness when we stay in the same position too long?  Imagine staying in the same position for an hour and a half while actively clenching your muscles in that position to keep yourself in place.  OH MY GOD.

I had a hard time getting out of the boat!

I wasn’t as terribly sore the next day as I thought I’d be but I was totally bruised on one whole side of my body.   Seriously, I looked like I’d been beat up!

Coming up next: DC Trip with the ACR

Hiking and Horses

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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.

10 Things

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I’m not really wanting to write about RA today.  Sometimes I worry that RA completely takes over my life.  And that is just unacceptable.  So to break things up, I thought I’d tell you 10 facts about me that have absolutely nothing to do with RA.

1. I was born in GA and have lived in SC and NC.  I’ve traveled the US extensively (there are only a few states I haven’t been to) but I’ve never left the country.  Everytime I try to schedule a trip, something comes up.

2.  I’m extremely claustrophobic.  Hell for me is sitting in the middle of a row because I feel like I can’t get out.

3. I’ve never been able to tan.  I have two colors: white and lobster.  Lobster doesn’t look good on me. I also have scars on my shoulders from a really bad burn in high school. So white it is.

4. I’m incredibly accident prone.  I really did fall down a handicap ramp once.  I also fell down the steps at a birthday party for my friend’s daughter.  Screaming the f word in front of a bunch of 3 year olds did not make me friends with their parents. And finally two summers ago, I did this to my leg in my gravel driveway.  Ewww.

5.  I love new clothes but I hate shopping.  I always wind up in the dressing room with the annoying kid who thinks it’s funny to peak under the dressing room door (happened last weekend at Steinmart) or in line next to the kid who is fah-reaking out because he missed his nap so his mom gave him a Red Bull to tide him over.

6. I hate reality dating shows.  It never ceases to amaze me how worked up people get over PEOPLE WHO HAVE TO GO ON TV TO GET A DATE.  I’m sorry but there’s just no way I could take someone like that seriously.

7.  I like other types of reality shows.  Intervention, Hoarders, Teen Mom (holy crap, I’m 30 years old and my mom would still kick my butt if I tried to cop half the ‘tude that some of these girls have!), anything with the Kardashians.  My personal favorite is Confessions: Animal Hoarding in that I can remind my pet that yes, life could be SO MUCH WORSE than living with me.

8. I spend too much time on my phone.  It’s embarrassing.

9. I LOVE bar games.  Trivia, darts, beer pong, you name it.  Love it.  Note that I never said I was good at any of them.

10. Without sounding cliched, I have some pretty fabulous friends and family.  I realize here that I’ve bitched more about some that were not so fabulous…but I’m a pretty lucky gal in that respect and am going to try to take some time to ‘introduce’ you to some of my lifesavers.

I’d love to hear more about y’all that’s not RA related!

I need to feel my age again!

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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.

Returning to the land of the living

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I’m slowly starting to feel better.  Slowly.

I credit Prednisone with that for now- I start my new meds this week.  I think.  Can I get a very sarcastic THANKS FOR NOTHING sent out to BC/BS for dragging their feet so long on approving Remicade that I was able to fully enroll in a study at my rheumatologist’s office instead?  So instead of dealing with their craptastic coverage and customer service as well as paying co-pays for all sorts of things, I’m going to get a little bit of extra cash, free meds, free labs, free x-rays, and weekly appointments with my doctor for….free.  SUCK ON THAT, BLUE CROSS BLUE SHIELD.  I really appreciate it.

Anyway.

This past weekend was the first weekend since probably April where I really felt that I was present and engaged in my life at a level resembling normal.  I’m trying to slowly increase my activity levels both physically and socially. I went on several short walks around the park.  I went to the Farmers Market and got a ton of fresh fruits and veggies for $15.  Then I came home and I marinated chicken in tequila, lime juice, onions, and garlic.  Then I popped it on the grill with fresh farm grown squash and corn on the cob.  I served all of the above with fresh home made salsa.

I have to say that even for someone who hates cooking, there is something satisfying about your whole house smelling like cilantro.

The whole preparing of the meal, the actual cooking, and even the cleaning was easy activity level but busy enough activity wise to keep me from being bored.

And I didn’t burn the condo down.  SCORE.

I didn’t realize until Saturday night just how “not there” I’ve been.

I met a group of people out for drinks at one of our usual haunts.  I walked in, sat down at the bar, and ordered a glass of wine.  At a lull in the conversation, another friend came up to me and said that a bunch of people were going outside to play bocci ball and did I want to come.

“OH!  YEAH!”  I slid off my chair and started following her outside.  I LOVE bar games. I didn’t intend to play myself because my wrists are still sore but when there are drinks, balls/darts/other things that must be thrown/rolled/hit/flung and then you add in my friends…something funny always happens.  Particularly at this bar where the nimrod who installed the bocci ball court made it face a busy street with a low wall.

Nope, I’m not missing this for anything.

Before I could even walk 10 feet, my friend stopped and turned around smiling.

“Wow.  That was actually sincere!”

I just smiled.

For sure.  But ouch. That clearly implies that she knows that most recently I’ve only been going through the motions of things and maybe not terribly enthusiastic to hang out with her and the others even when I thought I was putting up a good front and that…sincerely hurts.  On the flip side, the fact that she/they continue to include me when I’m sure that some nights I’m about as much fun as a root canal…means the world.

I really do have awesome friends.

My friends didn’t disappoint- neither cars nor pedestrians were injured in our game but one of my friends hit the back wall with such force that it split the ball in half.

And, as yet another sign that I’m still not back to 100%, I woke up Sunday morning feeling that groggy, super tired slight hangover feeling.

Really? 2 glasses of wine?  And lots of water?

What the heck?!?

That’s just wrong.

HTNWBBKQ8XV5

Trying and failing to not to take things personally

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I limped in to Starbucks this morning to get my usual coffee and it was a bit more crowded than usual.  I was talking to my boss while I ordered and realized at some point after I told her to ‘hold on’ that I was getting some weird looks because I had my bluetooth in and my hair down.  So it totally looked like I was having a conversation with myself…and answering…and telling myself to wait so that I could order. 

What struck me as strange is that I couldn’t care less that it appeared to many people that I was chatting with the voices in my head. Nope, I was more concerned that they saw me limping.

Lately, I’ve been a little down and out on myself.  Having RA sucks and when you over-analyze things like I tend to do, you make life a whole heck of a lot harder for yourself than it should be.  

This past weekend, I went to my cousin’s wedding.  It took place in Virginia, on the banks of the Shenandoah, and she was beyond beautiful.  

Getting there was a challenge.  I’ve been traveling a TON lately and my RA is not as well controlled as I would like it to be.  I feel lousy. I tell you that because I’m hoping it’s because I’m burning the candle at both ends right now and that it will start behaving again. Like immediately.

Anyway, I only agreed to go to this wedding because I understood it to be a 4 hour drive.

It was a 7 hour drive.  One way.

You should probably also know that I refuse to watch wedding shows and romantic comedies.  Thank you recent heartbreaks.  And that I have avoided a lot of family events in recent years for other reasons.  And that I absolutely cannot stand the thought of anyone in my family noticing any sort of symptoms of RA in me or (gasp) commenting on them.  

So when I arrived at the hotel on Saturday, I sent my hot mess of a self to my room and took full advantage of the whirlpool tub.  It helped considerably both with making me more comfortable and calming me down.  

I arrived at the wedding site with my parents and brother.  Even though I was uncomfortable, I wore heels the whole time with no noticeable limping. 

And then the reception started.

There was really only one comment but it was enough to tick me off for the next three days. I expected a comment about marriage to which I had crafted a catch all response that was very truthful but didn’t give away much and would help me transition the conversation to ANYTHING else.  

But this is what I got:

“So, where’s your boyfriend?”  

“Oh, that was done awhile ago.”

“So where’s the new one?”

“There’s not one right now.  I’m just really focusing on getting myself together and that’ll come when it comes.”  Like it?  I thought it was good?

“You know, physiologically, the best age to have children is at age 19.”

“You know, I think they frown on that nowadays.”

“How old are you?”

“30.”

“Ohhhhhhhh…….”

My sweet grandmother jumped in and redirected the conversation right before I could respond with “so, how is your terminal cancer treating you?”

I stayed for probably another hour, fuming mad the whole time.  When I got back to the hotel, I took another bath and then dreamt about a boy I don’t need to be dreaming about.  And again last night.  And got emails referencing him yesterday and today.  WHAT IN THE WORLD.

He never actually said anything about my RA specifically.

And I have no way of knowing if said family member knows about my RA.  No idea.  He obviously didn’t know I was single.  Which leads me to believe that I’m not high on the family gossip hierarchy.  Which is awesome.  I also have no way of knowing if I would’ve been upset if he hadn’t said that in a way that I could easily link back to my health.  You can probably tell what I tacked on to the end of his sentence.

Thanks to the powers of my analytical skills, I felt like he threw it in my face which I am positive was not his intention.  He’s always been very blunt and not terribly PC but he’s never been malicious. 

I guess I need to get a better deflector statement and I need to have a serious talk with RA: it’s not all about you!

But it still hurts.

Joint Aspiration Follow-Up

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The joint aspiration of my left pointer finger occurred approximately a week and a half ago.  

Here are some pre and post pictures for you.

What my left pointer finger typically looks like:

What my left pointer finger looked like immediately post medical assault (note the red puncture marks on the left side, sexy RA nodule on the right):

What my left pointer finger looked like 5 days post medical assault:

Doesn’t it look so different from before?  Doesn’t it look so much better?

Yes, I don’t think so either.  Moving on…

And then, on Thurs (about 9 days after) something happened.

I was sitting at my computer typing when I realized that typing didn’t hurt me.  Not even a little bit!  I looked down…

Hello almost normal sized left pointer finger joint!  How are you?  I haven’t seen you in ages…like 4 years.  Have you lost weight?  Because I recall you looking like a sausage and now you’re rather hot dog like.  You look GREAT! I am ECSTATIC to see you!

Having an almost normal sized joint in that finger is both a blessing and a burden.  I’m very self conscious about how it looks when it’s so swollen so the blessing is to have it looking normalish right now.  It’s a burden because at normal size, I have more of an idea of what I’m dealing with in terms of loss of use and joint destruction.  

I still can’t bend it all the way.

Nor can I fully straighten it.

It just kinda hangs there, somewhat useless.

What usually feels so swollen now just feels weak.

The nodule looks like it’s gone but I can still see it when I bend the finger.

I’m not sure if it can be ‘rehabbed’ at all or not.  I may not be able to straighten it because I have absolutely no muscle tone left.  That I can fix.  I may not be able to straighten it because I have so much joint damage.  That I cannot.  I think that it’s most likely the second option but when I go back to the rheumatologist in a few weeks, I plan on asking.

I’ve had a few pity parties the past few days over the thought of having that much joint damage but I guess it just is what it is.  If I hadn’t had the aspiration, it would’ve continued to be swollen and it would’ve continued to erode the joint.  And when the joint was so swollen, it was basically useless to me anyway.  Which means I shouldn’t be upset about it but really doesn’t make it any easier to look down at it and seeing it looking almost normal yet not capable of doing what  I need it to do.

A Day in The Life

Standard

6:45 AM:  Alarm starts buzzing and gets a swift (albeit soft due to RA fingers) whack to the snooze button.

6:55 AM:  Alarm buzzes again.  Swift soft whack repeated.

6:59AM:  Cat slinks into room, jumps on bed, and meows to say “for real, already, I NEED FOOD.”

7:05AM:   Combination of alarm and needy cat avert whack to snooze button and I groggily rise and assess cat bowl situation. I catch myself walking gingerly because I’m not sure how my feet feel yet to see that there is plenty but she demands a top off.  Occasionally, opening the lid of the container hurts. But what can I say…she’s a little diva.

7:10AM: Shower – problems opening shampoo and conditioner bottles which has influenced brands that I buy. Initial daily assessment of my aches and pains. 10 fingers, only 2 or 3 sore  = success. 10 fingers, 8-10 hurting = bad mood. Same with toes, knees, shoulders,wrists although I only have 2 of the last three mentioned.  Having 10 of the last three would not be bad mood but rather inevitable reality show stardom.

7:15AM: Hair drying, makeup application, clothing selection, longing glances back at the bed.  Minor difficulties with sharpening eyeliner with little pencil sharpener, sometimes picking a different pair of pants or shirt depending on condition of fingers and tightness of buttons.  Occasional difficulties on bad mood days with opening and squirting out toothpaste.  On really really bad days, it hurts running my fingers through wet tangled hair.  Thankfully, that hasn’t happened in quite awhile. Knock on wood.

7:30AM:  Breakfast time.  Usually soy yogurt.  No difficulties here unless you consider the lack of variety of soy yogurt available in the Charlotte metro area a difficulty.  (I would like flavors other than strawberry and blueberry and I hate fruit on the bottom.  But that’s all I can ever find.  In 3 different grocery stores.)

7:45AM: Time to head to work.  Minor difficulties in locking both front and back door.  When it’s cold, I can’t lock the deadbolt on the back so I lock the switch on the outer back door (which is actually more secure- found this out the day I locked myself out and a locksmith couldn’t get it open) and always difficult to turn the key in the deadbolt on the front.

7:55 8:05AM:  Arrive at work.  If I’m the first person there, opening this lock is always difficult.  Luckily, I’m never the first one there. 

8:00AM – 12:00PM: Meetings with clients, sales calls, admin work, conference calls.  Occasional problems on bad mood days with the following: typing, assembling presentation handouts, sending emails on Blackberry, fatigue, walking long distances on client site tours.  Minor difficulties every day with pulling and putting files up into tightly packed file cabinets, discomfort caused in knees by sitting in same position for too long, aching shoulders from sitting at desk.

12:00PM – 1PM: LUNCH.  No difficulties here.

1PM- 5PM:  Meetings with clients, sales calls, admin work, conference calls.  Occasional problems on bad mood days with the following: typing, assembling presentation handouts, sending emails on Blackberry, fatigue, walking long distances on client site tours.  Minor difficulties every day with pulling and putting files up into tightly packed file cabinets, discomfort caused in knees by sitting in same position for too long, aching shoulders from sitting at desk.

5PM- 6PM:  End of day meetings/conference calls/ occasional networking events/ drive home.  Occasional problems on bad mood days with peeling and sticking name tags on myself at networking events and also fatigue.  Minor difficulties every day with unlocking front door.

6PM- 10PM:  Dinner with friends, Happy Hour, dinner at home, gym, and other miscellaneous events.  A lot of times, the gym gets cut.  I’m most comfortable on the elliptical- good range of motion exercise for joints if you take it easy on resistance.  Difficulties with grasping free weights- I’m learning how to use the machines. Still afraid to try classes. Minor difficulties with cooking- it’s uncomfortable to grasp a knife to cut, inability to exert force to open jars, nervous to lift heavy baking dishes in and out of oven with hot pad due to not feeling like I’m able to grasp baking pan as well with hot pad. Fatigue is an occasional problem with all above except Happy Hour.  There is no fatigue in Happy Hour.  (Said with same intonation that Tom Hanks uses in A League of Their Own when he says ‘there’s no crying in baseball.”)

10:15PM: Wash face, take meds.  Minor difficulties opening pill bottles. 

10PM:  TV time in bed with feline.  Occasional problems getting comfortable with shoulders and wrists depending on if/where cat chooses to lay on me.  Occasionally discomfort caused by this makes sleeping impossible.  End of day assessment of aches and pains. 

Wash, rinse, repeat.

I’m a little sad that I can’t remember any other way now…

But I still feel very blessed.