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.

Hopeful?

I’ve had this awful feeling for the past five weeks of “just push through it.”  Telling myself “I know you don’t want to do it and I know you’re oh so tired but you have to do it anyways” about virtually every facet of my life has been exhausting.  And when I finish one of the things that I made myself go to, I am totally and utterly wiped.  Physically and emotionally. It is important to note that the things I’ve made myself go to with this mentality include but are not limited to: work, church, family functions, and early dinners with friends.

This weekend, I didn’t feel this way.

Friday after work, I went and got a massage.  I realized when I was undressing that I’ve been completely lax with certain things.  I’d like to publicly apologize to my massage therapist for the leg follage she had to touch.  And also for the thong.  I typically wear granny panties to massages so therapists don’t think I’m a whore…but I haven’t done laundry in three weeks so she should be grateful that it was at least clean.  Awkward.

I know you all were dying to know that. 

Then I had a quick dinner date with a guy I don’t really like.  Horrible, I know, but flare or no flare, it’s a recession and a girl’s got to eat.  Is it even more horrible that I totally dished about the RA to him in hopes of scaring him off?  And is the worst thing here that it didn’t phase him at all and while I should be impressed, I’m actually really annoyed?

Flares don’t necessarily bring out the best in me.

I was tired when I got home Friday evening and got in bed to watch a movie.  I actually slept through the night for the first time in a long time.  Yes,  I finally caved and took the Tramadol.

It was a hundred degrees here on Saturday.  I awoke mid morning to a text from a good friend asking if I’d like to go to the lake that afternoon.  I got up, made myself a cup of tea, and sat on the couch assessing my level of fatigue and the stiffness of my joints.  And then I had a rather uncharacteric (of lately) thought: why yes, I DO want to go to the lake today.  

Hhhhhmmmmmmm. Interesting.

The water at the lake was perfect and felt amazing on newly de-follaged legs and sore joints.  I’ve learned that my flares like heat. I was a little concerned about climbing in and out of the boat since I am weaker than normal but it wasn’t a problem.  My friends were concerned about weakness too and made sure I was always on either a tube or a raft and brought an ample supply of bottled water for me.

I hit a wall around 10 pm that evening but considering that I’d been outside since 3pm, that seemed pretty reasonable.  I was home and in bed by 11 and awoke still covered in lake water and SPF 2000 about 9am this morning.

I’ve been tired and sore today but not as much as usual and  I spent my day doing laundry and cleaning.

 Do you hear that sound? That sound? No, THAT one! What is that?

Oh right, the choirs of angels re: laundry.

Date Night

I bet that caught your attention.  No, not that kind of date.  I will forever remain coy on that subject when it comes to the trusty old Internet.  

But, I did have an all day date Saturday….with my immune system.  Actually, it was a three way date- I brought my joints along too.

Why?  Because I need my immune system to start putting out.  Or rather, if you want to get technical about it, stop putting out.  Or maybe it just needs to put out correctly?!?  Yes, that’s it.  I need to be in an exclusive relationship with my frigging immune system.  Right now, I feel like it’s whoring itself out all around town. So I don’t think that’s too much to ask.  Keep it in your pants, immune system.  GEEZ.

After sleeping in late, “we” got up and enjoyed my new specialty.  An egg white frittata with spinach, tomatoes, and feta cheese.  I was psyched- I’m trying to learn how to cook and I made it all by myself.  And people liked it.  AND NOBODY DIED.  Ok, so just me but still, it’s a start.

Then “we” went to get a massage.  I have a funny story for you here, which actually served as inspiration for calling this day of relaxation a “date.”  I’ve been going to the same place since July- generally going 3 times a month.  It is glorious.  So when I called to schedule my appointment, a new girl answered.  I asked for Saturday morning with the same person I always go to and said my name.  The appointment was confirmed and that was (I thought ) the end of the story. Until I get there Saturday morning.  The same new girl checked me in and handed me the clipboard of paperwork for new patients.  I looked at her, confused, and said “I’ve been going here for months- do I need to do new paperwork?”  She looked at me and said “No, that’s for (my last name).  I don’t think he’s been here before.”  It took a second for it to sink in what had happened.  I started to say “who the heck is….” when it hit me and I laughed so hard that I couldn’t breath.  Folks, she somehow took my first name and last name and booked me a couples massage based off of that.  

Niiiicccceeee.

So, the massage was fantastic (as usual) and next “we” went to the gym.  I showed the joints and the immune system who’s boss by doing 20 minutes of elliptical and then treated them to 15 minutes in the hot tub and 10 minutes in the steam room.  (May I add in here what an experience my gym is- a guy I know calls the men’s locker room at the same gym “the gauntlet” which I never understood until recently.  The reason he calls it the gauntlet holds true in the ladies locker room- everybody walks around naked. And not just “I’m changing my clothes and had nothing on for a split second” but full fledged strutting in birthday suits. WEIRD.) A fruit smoothie later (they called it organic with immune boosting additives but I’m doubtful) and “we” head back to my place to shower and clean up.  

Originally the plan was to end the date here because I had other plans with other folks but “we” were having so much fun that “we” decided to party well into the night together.  Ok, so my plans got shot to heck and I ended up curling up on the couch and watching movies.

It was lovely.

In other news, I finally got in with the rheumatologist.  I’m kinda frustrated.  Instead of presenting new options like I’d asked for , he increased dosages of methotrexate and Humira and told me to discontinue sulfasalazine. I go back in 3 weeks for an injection into the joint as well as a joint aspiration if this doesn’t help.  Can you feel my excitement???  In the confusing-shocking but only to me-not sure what to think of this news, my bloodwork came back (drumroll please) negative for RF.  Hmmmmm.  I’ve always been positive.  So I’m not sure what to think about being negative.  While I can find all sorts of articles explaining patients going from seronegative to seropositive, I cannot find anything on the reverse.  Which makes me feel like a freak of nature, yet again.  He shrugged it off like it was no big deal.  Actually, his exact words were “You still have it- your CCP is elevated and you have symptoms.”  But still….anyone else experience this?

Massage Therapy and a breath of fresh air!

I will admit it: I am addicted.  

It calms me, it soothes me, it relaxes the muscles of my back and neck which bother me, it stimulates an immune response which helps me manage my RA.  I crave time where I am forced to do nothing but chill.  And this takes the cake.

I’ve been to probably 10 different therapists over the years, most of them good, some of them atrocious.  A memorable one would be the guy who chuckled when he had me roll over and got a glimpse of boob.  And proceeded to stare.  Thank you, douchebag- because of you and how uncomfortable you made me, I now only go to female masseuses.  Have fun at the club tonight by yourself with your balding yet spiked hair and Ed Hardy shirt. I bet you like techno music and use cheesy pickup lines.  

I digress.

I found my current one by chance.  A coworker had a gift certificate that he wasn’t going to use.  ”I don’t like being touched and I have a problem laying naked on a table in front of a stranger.”  To which I said “I do and I don’t.”  I called, made an appointment and by luck of the schedule, got this one.

Seriously, she is the best one ever.  Not because of her bodywork (which is great) but because of her interest in auto-immune disorders (family member with Webener’s who is on Prednisone and Methotrexate) and the fact that she’s currently studying naturopathic medicine.  

I admit, if you really think about it, that it’s a little weird meeting someone for the first time and five minutes later, you’re laying there with no clothes on.  Somewhat like a frat party?  (Sorry, Mom- totally kidding.)  It’s even a little more intimidating when you have to explain to them that “hey, I have this thing and these spots that if you aren’t careful, you could really hurt me.”  I’m accustomed to having to explain what and where every time I go to the same people.  I’m also very hesitant to let them touch the spots.  In fact, until this one, I’ve never let anyone touch my affected joints.

So, imagine my surprise on my second appointment when she asked to see my hands before we started.  She looked at them and gingerly touched them.  ”Ok, you’re a little swollen today.  I just wanted to check before.  How are your feet?”  Wow.  I seriously think I hugged her.

It’s made a huge difference in how I feel.  I’m getting massages weekly like my doctor recommended for the first time ever with no fear of injury.  She is more in tune with my RA than my rheumy is.  She has picked up on the spots in my wrists that bother me sometimes, which I’ve never mentioned, and this week made me happy by saying “Your fingers really look much less swollen lately.”  I had noticed it too but hadn’t said anything to anyone because I thought it was just me being hopeful.

She’s given me advice on supplements-where to buy and brands to try, recommended a yoga teacher who can help me modify things when I need to, and is encouraging me to try acupuncture.  She’s familiar with my medications and is very empathetic on their side effects.  We talk about diet and foods that are by nature inflammatory.  

 I’ve had better conversations with her than I have with my doctors.  And in some cases, more well-informed conversations.  I really believe in treating the whole person, sometimes I feel that my doctors don’t.

I swear I had a point here.  I’m excited.  I’ve always wanted to approach my treatment as a partnership.  I only want people to understand where I’m coming from and where I want to go.  I want to get a massage as often as my budget allows.  I only want my goodies ogled in an appropriate venue. I want to have clinical conversations about my rheumatoid arthritis that don’t make me feel like crying.  And for now, I have that.