Tag Archives: Friends

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

Whining Moratorium

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I looked back at the past few posts and got a little mad at myself.  So I’m making a rule for my posts for the next few weeks: PUT ON YOUR BIG GIRL PANTIES, AJ, AND STOP WHINING.

Yes, I don’t feel wonderful but no, life doesn’t suck completely.  Or at all, for that matter. I’m getting on my own nerves so I would gander it’s fair to say that you don’t want to hear it either.  And it’s definitely not productive. So to commemorate the beginning of my blog attitude adjustment, I will tell you some good things that have happened the past few days and not dwell on how bad I may or may not be feeling.

I got to spend a lot of quality time with my favorite “caretaker.”

People who don’t know me well don’t know that she is MUCH more than ‘just a cat’ to me.  If I’m sad or upset or just not feeling great, she’s right there by me as pictured above.  She’s also right there by me if there is anything fleece involved. LOL.

I figured out how to connect my laptop with my TV and then how to stream Netflix on my laptop.  So I’ll hook it up, lay down with my favorite fleece blanket, cuddle up with my favorite cat and relax the day away.

Things at work are going really well.  I hit the highest I’ve ever produced (at this job) this last month (which I hope is indicative of the economy trending in general but we’ll see) and got a nice bonus check.  I’ve been obsessing over getting a grill and found one on clearance for $70.

Once I had it home, I realized I had to put it together.

Estimated time to assemble: 1.5 hours.

Time it took me to assemble: Let’s just round it out to 7 hours.

I suck at following directions.  You know how the joke is that men don’t read maps?  Well, Amanda don’t read directions.  At least when it comes to assembly.  It should be, afterall,  easy because you know what the final product is supposed to look like, right?

The actual screwing itself was slow going. (THAT’S WHAT SHE SAID. Sorry, cabin fever has turned me into part adolescent boy.) I had to take breaks because my wrist was sore and had to use a wrench to hold pieces together because my fingers couldn’t. Then I realized I had put several pieces on backwards and had to backtrack.  Somehow, during the disassembly and reassembly process, the whole box of screws and flanges oddly managed to fly across the room.

I have no absolutely no clue how that happened.  A ghost?  The cat? A Hogwarts spell gone bad?

In all honesty, it kinda became one of those ‘for the principle of it’ things.  By God I’m putting this damn grill together, I don’t care how long it takes me, I don’t care how bad it hurts, it’s just got to happen.

And well….

It’s a grill!

And have I mentioned that the tomatoes I’ve been growing out here are also looking good?

I went today to watch one of my friends compete in her first kayaking competition.  It was ridiculously hot and I was wiped out by the time I got to the section where they were play-boating at.  I have good friends who try to take care of me without outright saying that they’re trying to take care of me: there was an extra chair, sunscreen and an unlimited supply of Gatorades waiting on me.  Very fun and very sweet!

So all in all, a good weekend even though I’m not at 100%.  I go back to the rheumatologist tomorrow and then am heading to the lake with some friends for a long relaxing holiday weekend.

A New One For Those Keeping Tally

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Excuse the language.  Or if it bothers you, just skip this entry. I’m still a little upset.

“No, I don’t run anymore because I have Rheumatoid Arthritis.”

Momentary awkward pause while his hot little brain mulled this tidbit over.

“But…but…but you’re so pretty…”

Blink.

Swallow.

Vein twitch.

ARE YOU A F*CKING IDIOT?

At what point do you think that something like that would affect me having or not having RA or anything else for that matter?

Do you think immune systems ‘immuno-select’ who gets these things based on how people look or how much is in a bank account or what their last name is?

DID YOU FALL AND HIT YOUR HEAD ON CONCRETE?

That argument has just as much validity as you being very honest and telling me that “I’m dumb as a brick” and me responding with a whiny “but you look like an Abercrombie model.”

And what do I say to something like that? Um, thanks?  I think?

That’s almost as offensive as telling someone who’s lost 2 pounds that they look “SO MUCH BETTER.”

Really?

I mean  SERIOUSLY?

Seriously?

Can you at least follow it up with a well placed question like maybe ask me what RA is?  Anything? I realize that would ask an awful lot of the gerbil running the wheel in your head but just leaving it at that and then uncomfortably staring at me makes you look like Lord of the Douche, getting ready to do a little jig for me, and makes me feel awful about myself.

Yes, I know Mom.  I know I am being rude here.  You’re right- I was raised better than that.  No, please don’t give me the guilt trippy “I’ve raised horrible children” speech.  You’ve made that point numerous times in my life and I forgive you for making me so mean sometimes.  (I kid.) Yes, I will make sure to let everyone know that you sent me to Cotillion.  Twice.  Yes, I know it was expensive and I’m not entirely sure it was money well spent. Yes, I think you’re right that  maybe his parents didn’t send him because maybe (gasp) they didn’t think it was important.

I’d like to point out that it is YOUR daughter here, valedictorian of Cotillion, who is posting f-bombs online.

But seriously, “you’re so pretty?”

You’ve got to be kidding me.

Tequila is gluten free.

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So yes, that’s pretty much my big take away from the weekend that started early Saturday morning with a shot of Toradol in my ass.  We’ll get to that in a moment….

Have you seen the movie Mean Girls?  It’s one of my favorite movies- snarky, hilarious and very well written (in my opinion).  If you haven’t seen it, in one of the plot lines, Cady is trying to sabotage Regina by telling her she should go on an all carb diet to lose weight.  Regina, not the brightest crayon in the box, keeps holding up items of food and asking “is butter a carb?” or “is bread a carb?”

So yes, that’s kind of how I feel right now grocery shopping.  It’s taking me forever and I literally read every package to see if it’s gluten free or not.  If I can’t tell by packaging, I whip out my trusty Blackberry and google “is rice gluten free?” I’m sure it’s pretty funny if you see it in action- me staring with a vacant, blank, confused stare intently at what is for most people a very simple package of food.  I’m sure it’s even funnier if you know much about my cooking style which I’m pretty sure I’ve alluded to here on multiple occasions.

Welcome to my home.  Allow me to heat you a wonderfully fresh gourmet Lean Cuisine.

But I’m slowly getting there.  I’m still cheating…but not as much…and have found a couple of things I really like.  I’ve found some items that are gluten free that really surprised me- TEQUILA and rice.  I even made a delicious Lentil casserole tonight.  And with that statement, somewhere, somehow, an angel got its wings.

I was being overly ambitious thinking I could go gluten and dairy free at the same time.  In fact, that’s what I was cheating with most often (I sprinkle a little bit of cheese everywhere- feta on eggs, cheddar on salads etc- and the soy cheese was awful.)  So I’m going back to baby steps- gluten free first.

So, about that shot in the ass….

I’ve give you the short version for now.

-  I went to a friend’s 30th birthday party on Friday night.  I rested all week for it, bought a new dress, and was really excited.

- Friday am, in true RA form, after a few days of feeling a little bit better, RA decided to make things more interesting.

- Things were so interesting Friday night midway through dinner that I left early.  I am still embarrassed- I tried to leave quietly but everyone asked why I was leaving and I had to give a bit more info than I wanted to at that time, especially to people who for the most part I don’t know.

- Saturday morning I woke up and things RA wise felt curiously differently.  By curiously different I mean REALLY EFFING AWFUL.  I wound up going to Urgent Care in tears, getting a shot of Toradol and prescriptions for another Medrol pack and Vicodin.

If I ever have children, they will be named Toradol and Vicodin.  For real.

That afternoon my neighbor, who witnessed my early morning emotional breakdown in the parking lot, came over to check on me.

Neighbor: So, how ya feeling Rockstar?

Me: A little better. Tired.  Sore.

Neighbor:  (chuckling) You must’ve had quite a night.

Me: (annoyed stare)

Neighbor: Ok, if you don’t want to talk about it…was it that bad?  Was he old or was he just not hot?

Me: (finally getting what she thought had happened) No, I was not drunk.  No, I was not walk of shaming home in tears.

I appreciate that though.  That’s awesome.

I would really like for my insurance company to hurry the heck up and approve this new medication.  Like immediately.

Hopeful?

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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.

Trees and Fingers

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I’m changing some things on my page (nothing major, just playing with it) and I uploaded a new header picture.  I’m a little sad that I can’t get more of the image in any of the headers so I wanted to explain why I love that picture so much.

I took this picture a year ago yesterday.  My friend and I who were both moving from Greenville, SC spent a day taking pictures around town of all of our favorite places that we would miss.  It was a blast and you can read about it here.

One of my favorite places to go there was Falls Park.  It is truly a feat of city planning- they torn down a bridge that used to cover waterfalls right in the middle of downtown, torn down several abandoned buildings also surrounding, and it completely transformed the downtown landscape.  If you build it, they will come: it changed the downtown from kind of seedy to thriving with outdoor dining, free productions of Shakespeare in the summer, art galleries, and tons of activities year round.  

Anyway, surrounding the park are several older neighborhoods with gigantic, beautiful oak trees.  All of the trees are towering and lovely but this tree is truly my favorite.  It is growing on the side of the bank with all of its gnarled roots completely exposed.  Years ago, it reminded me of a Picasso painting.  Once diagnosed, it reminded me of gnarled “RA fingers.”

I love how Picasso can take a normal image and distort it, warp, and layer it so it no longer looks normal or anything like the first image but still contains definitive elements of the normal image.  It fascinates me.  No, I’ve never liked “pretty art.”  So, I thought I was being all profound by seeing RA fingers in the roots of this tree.  Can you see it too?

I think it’s fascinating.

And then I was reading about the park online and saw a picture of the tree in said article.  The caption mentioned how so many people are so taken with this tree because despite its gnarled fully exposed root structure, the tree still thrives on the surface.

And that really spoke to me. That I thought was pretty dang cool.

I’m tired.

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I’ve had a go go go past few weeks.

I have:

-Spent a week in CA for work. Going to bed at midnight CA time but waking up automatically at 645 NC time does not make RA happy.

-Drank too much tequila my last night in CA and flew back to NC with an extreme hangover.

-Hangover plus stiffness from traveling plus lack of sleep=mini flare.

-Slept for two days. Fitfully because random places keep swelling.

-Went to bluegrass festival in the boonies.  Was the only ‘non-hippie’ there. LOL.  Was made to stand in the back of the bus on ride back to parking area.To quote my friend, “how do you feel being made to stand not just in the back of the bus, but in the back of THIS bus?”  Laughed hysterically and blasted Outkast on the way home. 

-Learned from this situation that even if I’m in a flare, I don’t hurt as bad if I do something I want to do vs something I have to do.  Would this be called selective RA? Ha.

-Hit my highest personal production my office has ever seen.

-Had to deal with some growing pains due to my increased production.  But growing pains because of increased production = good whereas growing pains caused by shrinking production = not good. 

-Stress from high production and growing pains = skipping lunch, not drinking enough water, increased fatigue.  Continued random pains.

-Found out our company’s chief sales officer (who is kind of scary…but very nice in person) would be spending a day with me….the day before she got there….and wanted to go with me on several client appointments. No stress.  While dealing with a mini flare.

-Pulled said appointments out of my rear.  Still not quite sure how I did that with such big prospects and such little notice.  Mini flare became ‘congratulatory flare.’

-Screwed up my Humira injection- it clicked like it normally does when it’s done.  It was not.  Spraying approximately $1200 worth of Humira all over your kitchen is not good for flare.  Or temper.

-Had my direct supervisor in town Monday – Wed this week.  Direct supervisor is a hoot but a horrible driver.  I thankfully did not get carsick.  Again.  Jolting around in a car for three days is not good for mini flare.

This weekend, I head to my cousin’s wedding.  If you don’t sense excitement, you may be correct.  Nothing against my cousin.  I love her and I’m very happy for her. But the last thing I want to do is to spend more time in a car, more time on my feet, making small talk dodging questions about both RA or why I’m still single at a dry wedding with vegan meal options in a barn in the middle of nowhere.  For real.

I need a massage.  And a break. 

Goodnight!

First Joint Aspiration: I did not die.

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Today I am typing with one hand because yesterday I had my first joint aspiration and cortisone injection into my left pointer finger. And yes, it was just as much fun as it sounds like, maybe even more.

At my rheumatologist appointment last month, he mentioned that he may be doing this at this month’s appointment if my finger didn’t look better.  Actually, he mentioned he might be doing this on two fingers so I guess I lucked out? 

Sure. 

So, as he was examining my hands I wasn’t surprised when he said he needed to do one.  I figured that it would be one of those things like “sure, let’s do one.  Talk to the scheduler and we’ll set you up to come back for it.”  That way, I’d have at least a few days to either wrap my brain around it or find a way to get out of it.  So when I said that  I would be out of town the rest of the week but could do it next week I was a bit surprised when he responded ‘that’s great that you’ll be out of town- because we’re doing this right now.”  He stood up, fetched some supplies out of the cabinet and started prepping the needles.

“Put your hand on the table and sit on the stool.”

GULP. 

He pushed and pushed on my finger with his hands, I assume trying to assess where he was going to go in from, which really really hurt. 

Then he finished up his prep work- one large syringe with a large needle that he would use for the aspiration and one smaller syringe and needle that he filled with a whitish liquid (cortisone).

“Ok, I’m ready.  You ready?”

NO!  I’m NOT ready.  I don’t let ANYONE touch my left hand so WHY ON EARTH would you EVER think that I’m ready for you to stick a needle in it? Being “ready” for this to happen is a day that will never come.  The better question would’ve  been “have you come to terms with the fact that I am the expert here and this really is the best thing for you” or “are you sure you won’t haul off and pop me when the needle goes in?”

I quietly shook my head yes and told myself to look away.

He sprayed my finger with the numbing agent and I didn’t feel the needle go in.

Gosh, those are some great mini blinds.  Are they plastic or are they wooden?  I prefer wooden but plastic is more affordable and in some cases easier to keep clean.  And a lot of the plastic blinds can be made to look like wood.  I wonder if I could afford plantation shutters right now.  I like plantation shutters. Wow, I’m doing it.  This isn’t so baa……  WHY THE HELL ARE YOU DIGGING AROUND IN THERE? Mini blinds, mini blinds, MINI BLINDS.  IT FEELS LIKE THE NEEDLE IS COMING OUT THE OTHER SIDE,.  Great, then I can put an earring through it- maybe a bull ring- as if my finger doesn’t look freakish enough- LET’S PIERCE THE DAMN THING.

“Ok, I’m done aspirating.  Now the cortisone.”

Ok, aspiration kinda sucked but I hear cortisone feels great once it’s done.

HOLY HELL.  I THINK MY FINGER IS GOING TO EXPLODE.  No really, actual explosion.  Joint, finger meat, and blood- coming at you in just a minute.  OH MY GOD. 

“Please stop.”

“It’s ok, I’m done.”

“I can’t bend my finger at all.  Is it supposed to do that?”

“Yes, I couldn’t aspirate as much as I wanted so you can’t bend your finger because it’s full of cortisone.  It’ll go down quickly.  Let me get you another bandaid.”

As I stood up, I realized that there was visible sweat on the table from where I had my other hand resting. 

“So, this will go down- it’ll probably be a little tender for 48 hours and you probably won’t be able to bend it for the rest of the day.  I couldn’t aspirate as much as I wanted which probably means that the joint lining is now really thick.  The cortisone should make it go down though so we’ll look at it again next time.  We may have to do it again, on this finger and possibly on the other one.  But I won’t make you do the other one today.”

Damn right you won’t.

And, drama queen tendencies aside, I don’t think it’ll be as scary next time.

A Day in The Life

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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.

Advocates for Arthritis

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Wow. Wow. WOW.

I don’t even know how to catch you all up on everything that’s going on.   I’m exhausted but in a good way. So bear with me if this seems a bit scattered…I have so much to talk about that there is no way I can do it justice.

I really truly feel that the only control I have over my RA is my reaction to it.  I can be negative about it and let it hold me back (and exascerbate my  symptoms) or I can try my hardest to keep my life as close as possible to how it was pre RA.  The second choice is clearly the one that works for me although sometimes I do still have a really hard time with it.  Every once in awhile, I’ll have these identity crises- I know who I was before RA and who I was on track to being without it….so what does this mean to who I am now? 

The easy answer is the same person.  The hard answer is the same person.

I continually search for outlets to mesh the “pre” and the “post” me and I just got back from one of the best RA specific experiences I’ve had to date.

This past Monday and Tuesday, I had the privilege of being a part of the American College of Rheumatology’s Advocates for Arthritis Capitol Hill Fly In.  For those of you who are not familiar with this, it is a non-partisan (ie the only way I was comfortable participating) yearly event where a group of rheumatologists and patient advocates from all over the country jet in to discuss legislative issues that affect rheumatology with their local members of Congress. 

The trip had been on the books for quite some time and it was an absolute circus to be doing this in the midst of “current legislative events.”  Literally, the phones in the offices didn’t stop ringing, people were running in the halls at times, media was everywhere, and it seems like every major health organization was represented up there that day.

Issues that we discussed:  (I’ve linked these to the issue briefs for those interested)

Prior to our meetings to prepare us for our Capitol Hill meetings, they had a patient advocate reception.  I wasn’t sure what to expect and was a little nervous at walking into a room full of other patients I didn’t know.  I’ve never been accused of being shy but still, it’s a little intimidating. Also, when I’m nervous I either a. turn in to Rain Man b. chatter and giggle incessantly or c. curse like a sailor.  Please God, do not let me do any of the above.

I did not.

What a diverse group of wonderful people all the patients advocates were!  It was amazing- all ages and many varying levels of disability were represented.  (Not that levels of disability matter at all but coming into this, I was worried that I’d have fatigue issues/feet issues but decided the proper response was to NOT verbalize this fear when I saw that several of the people who were so excited to walk all around the Capitol had walkers…THAT is impressive.)  I love that so many people affected by this are so involved!

By luck, I wound up sitting at a table with Melinda Winner, another RA patient whose website I love to stalk.  She is hysterical and truly inspiring- while dealing with multiple types of arthritis, she still manages to write and promote her cookbook, Cooking With Arthritis, and travel the world doing all sorts of fun things like appearing on the Food Network! 

The rest of the day was spent brainstorming with our teams (generally a patient and several rheumatologists), discussing the issues, and dinner.  I was 100% exhausted but excited for the day to come when I hit the sack at the ripe old hour of 9PM. I’m so young and fun.

Our meetings on Tuesday with members of Congress were eye-opening. There were so many things I hadn’t realized about how our country works.  First, we were prepared ahead of time that most of the staff in these offices would be young, REALLY young.  Knowing that, I still wondered if the gentleman who greeted us in the first office was old enough to drive. (No, I didn’t ask.)  In spite of being so young, they are remarkably well informed and well spoken.  Everyone listened attentively, asked a few questions, and agreed to review the issues we spoke of. 

We were also prepared ahead of time to realize that we weren’t going to change the world in a day.  Meaning that getting them to review the issues or, on a more basic level, understand what rheumatology is, is still a success.  Given that criteria, I feel like our team did a very good job.

Highlights of the day?  Hmmmmmm…..three highlights. 

  • First, the made to order pasta bar in the dining room.  FANTASTIC although I did have to tell them to take it easy on the garlic. That could potentially be bad for business!  
  • Second, one of our meetings was with the legislative aide for one of our NC Representatives…who just happens to be a childhood friend of mine.  Who I also was on dance team with for years- so someone who knows what I used to be capable of and may understand just a little bit more of what this diagnosis means to me and to other people diagnosed.  I hope I didn’t scare her….
  • And third, meeting yet another Representative who has Rheumatoid Arthritis.  I feel good that RA (and other types of arthritis) are beginning to have a “face” where it matters.

So.  What now?

I realize now more than ever how important it is for us to have an accurate image out there- in the media, in magazines, in society, and in government- regardless of what side of the fence that you sit.  I’m still floored and greatly inspired by the number of patients I met who are doing just this.

I plan on keeping in touch with the people I met up there as well as attending next year (if they’ll have me!)  I plan on continuing to volunteer and finding other ways to get involved.

I’m enjoying feeling like the same old me.  Albeit me who is still exhausted and whose feet still really hurt.