Somewhat of a solution

I sat down to write a post tonight that I’ve been stewing on and all of a sudden things went a little haywire.  Phone ringing, email buzzing, friend stopping by…so until I have a little more time to spend on it I will leave you with something I shared on my Facebook page that I’m still sheepishly chuckling over.

What does one do when one buys an expensive bottle of vitamins from the vitamin store and realizes after one removes the plastic security seal hence rendering it unreturnable that one is totally and completely physically unable to open said bottle after trying with bare hands and numerous implements?

Why you lose your temper and grab that ‘forever sharp and will cut through steel’ knife that your mother for some reason thought you needed when she was at a stooped up tupperware party and that you unceremoniously threw in a drawer and forgot about, you saw the top off, and then you store the topless vitamin bottle in a ziplock bag.

Problem solved.

Seven pounds

A picture speaks a thousand words, right?

Meet my little bundle of claws, Molly.

She’s seven years old and weighs fourteen pounds.  She’s my feisty baby. 🙂 This picture shows her in one of her favorite places giving me the old ‘turn the water on and I’ll hairball all over the clean laundry next time you leave it piled on the guest bed’ look.

Does it help conceptualize how big she is by seeing her in the sink?

Good.

Now chop her in half and attach one of the halves to my butt.  Because that is how much weight I’ve gained on Prednisone since June.

I know that sounds horrible in several ways. I realize I need to not be so vain. I realize that I’m lucky to have access to healthcare and medications.  I realize I need to be happy that I guess I’m feeling a little better (although I now think I’m getting the placebo rather than Enbrel because I’ve dialed the Prednisone back to less than 10mg and I’m not feeling as good) but I’m really upset about the weight gain.

I weighed 113 when I went to college.  I admit that was too skinny- I’m 5’6. At my heaviest, after long term Prednisone use, I wore a size 12 and was teetering on having to go up a size.  I have a hard time looking at pictures from that time. But I started to feel better, got off Prednisone, and took back control of my diet and exercise. In May/June, I was a size 4.

I worked my butt off.  Literally.  You know how on all the weight loss shows they have super scheduled workouts, controlled meals, top notch trainers, supportive friends and family, and then they all somehow get fabulous makeovers for the finale show?  Um, yes….that doesn’t really happen.  I did splurge on a trainer who was enormously helpful for the diet and exercise part and am considering doing this again.  But scheduled workouts?  No, anything beyond our weekly appointments was up to me to make sure happened.  Controlled meals?  Again, all on me.  Supportive friends and family?  They tried. “I’m so proud of how hard you’re working, Amanda.  Now let’s go get Mexican and drink lots of beer.”

I am still waiting for my makeover.

So to gain 7 pounds so quickly after it took AGES+ literal blood, sweat, and tears to get it off….I’m having hard time not completely freaking out about it plus I feel gross and bloated and uncomfortable.   But I’m also really weak from this dang flare so really getting in a workout right now is tough.

I started easing myself back into the gym this week.  On Monday, I did 12 minutes on the elliptical- there was much hacking and wheezing and general feeling like I was dying!  I had intended to do 15 minutes and then some light weight training but my legs felt like jello.  I took yesterday off mainly for the courtesy of the other people using the gym.  Today was better. I did 20 minutes on the elliptical. Then I did 3 reps of 10 on the leg press at 40 pounds and 2 reps of 7 of walking lunges with 8 pound free weights.  (Point of reference: I used to do 3 reps of 15 on the leg press at 75 pounds and 3 reps of 25-30 walking lunges.)

Then I sat down on the bench and did a mental checklist of weight exercises I used to do: nope, can’t do that one yet and that other one would be a lot of force on my knees which isn’t a good idea yet.  And oh heck no, I am NOT doing that one because it completely sucks. So then I went home.

But it’s a start and I’m happy with what I did tonight.  My goal is to work up to 30 min/3 times a week for both weights and cardio.

I have a fun fall coming up: heading back to DC for the American College of Rheumatology’s Advocates for Arthritis where I’m ESPECIALLY excited to see some of you there, two trips to California, a Lady Gaga concert, tickets to see the Carolina Panthers, hopefully another trip back to SC, and a birthday a month from tomorrow. Ok, I’m not really excited about that last thing.

I would really like my present to myself to be the absence of those freaking seven pounds.

Note: no cats were chopped in half for the writing of this post.

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.

On the wrong side of the karma stick

I may have purposely forgotten to mention that I may have been a little rough on one of the nurses at my rheumatologist’s office last week.

I may have been a little frustrated that it took them 2 days to return an urgent call.  I may have been more frustrated because it takes at least 2 days to get a response on anything from them.  A two day turn around on a random question is gray area (in my opinion); a two day turn around on an urgent question is never acceptable (in my opinion).

I may have spoken a little harshly with the nurse who had the misfortune of calling me back after I left a second message asking for a response.  Perhaps a little more harshly than was warranted for said situation and definitely too harsh based on  the fact that she really was taking the time to try to understand what I was asking and trying to help me.

I may have been a complete brat and she definitely didn’t deserve that. As soon as I hung up the phone, I felt awful.

Enter karma.

At my appointment yesterday, I may have had my labs drawn by….you guessed it…the nurse who I was not terribly nice to on the phone.

I was immediately embarrassed and told her I was sorry for how I spoke to her on Friday.  That I was really frustrated but it was no excuse for me to talk to anyone that way, let alone someone who was trying to help me.

She was super nice about it, said she understood why I was frustrated and not to worry about it.

And then…don’t you see this coming…she got to go fishing in my arms.

No, I know she didn’t do it on purpose.  My veins just like to roll.  This is not the first time this has happened and I’m sure it won’t be the last.

Complete suckage yet simultaneously totally hysterical.

Moral of the story: Don’t yell at people who may have to stick needles in you.

Duh.

Whining Moratorium

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.

To myself in a flare

Dear Amanda- In-A-Flare,

Please print this out and carry it with you until your flare subsides.  Just a few observations on your recent behaviors and maybe a few tips to make things easier for you once you’re no longer a whiny b*tch.

-Your home: I know you’re hurting and I know you’re tired but really…it is BAD FOR BUSINESS when it starts to look like an episode of Hoarders.  FOR THE LOVE OF GOD, just put the dang clothes in the hamper.  Seriously.  This is only a little bit more effort than the floor and you can actually make it fun- aim for the basket.  SLAM DUNK. *imagined people cheering.*

-Your kitchen: Just because you don’t feel good doesn’t mean that you are suddenly Paula Deen cooking up some comfort food.  Nope, you’re Paula Deen getting hit with the ham….Amanda, you can barely boil water.  So don’t put yourself through the stress of “I think I’d feel better if I made myself some corned beef with veggies” because even on the best day YOU ARE COMPLETELY INCAPABLE OF MAKING CORNED BEEF, then you’ll be upset about it, and then you will leave the dishes in the kitchen for days because you don’t feel like cleaning them up.  And then the ants will get them.

-Showers: these should be taken daily.

-Those comfy sweat pants and the shirt with stains on it: should never be worn outside the home.  Also, should never be worn INSIDE the home if people are coming over.

-Other people who piss you off: for the most part are not doing it on purpose. Please take a deep breath or a quick walk before deciding how to respondto them.  Trust me on this one. Also, there is no conspiracy- never has been and probably never will be- so once and for all let this idea go. And finally, I realize you were really upset when that eighteen wheeler blew a retread on the highway directly in front of you.  I realize that it was scary that you had no room to avoid it and were very lucky that you had to run over it and didn’t damage your car.  HOWEVER, the appropriate response was to just stay put in traffic or pull off at the exit.  NEVER EVER EVER should you furiously dial his safe driver line marked on the back of his truck while speeding up and angrily waving the phone at him so he could see what you’re doing.  Please now go back and read that whole conspiracy bit again.

-Your mom: Should not be snapped at because you’re annoyed that she always says methotrOxate rather than methotrexate.  Seriously, you’re being really petty.  She’s asking about it because she cares and is concerned, remember what we just talked about regarding that whole conspiracy thing? 

-Major life decisions: don’t go there.  Just don’t. 

Keep in mind that while things suck right now that there are a lot of people working hard to get you feeling better.  In a month, this will all be a distant memory.

Feel better,

Amanda-Not-In-A-Flare

Trying and failing to not to take things personally

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.

I’m tired.

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!

Amanda-1: PPO-0

For now at least.

After submitting all my paperwork (mainly 6 years proof of continuous credible coverage) to the insurance douchelord company,  I finally got the word today that I really can see the rheumatologist next week.

You see, this same company who I am now covered by (again) and I have a checkered past.  This is the carrier I was with when I was diagnosed.  So, I learned the hard way that I CANNOT go to the rheumatologist until I have all my ducks in a row because it will be a nightmare to sort out on the flip side.

I really do feel bad for their customer service reps.  I mean, it has to be a horrible job.  I would imagine that everyone who calls in is like me- ticked off.  And they can’t really do anything to help you.  And (and this is going to sound horrible) the only way to get any attention from someone who CAN help you is to not be the nicest person in the world.  And that makes me feel pretty crappy.  For the record, I do tell them that I’m not mad at them personally and I realize that they are just the messenger.  But still…

So today, the poor rep excitedly announces to me that they have all my paperwork and that I’m good to go.  Underwhelmed.

Really?  I’m not falling over with gratitude that you DID YOUR JOB and will be fulfilling your BASIC policy requirements?  After I only had to fax it 3 times?  And call multiple times after that?  And what does that really mean?  Does that mean that you’re going to pay the bills in accordance to the policy or are you going to put me through the same ordeal you have in the past?

I so wanted to shout: DO YOU NOT KNOW WHO YOU’RE DEALING WITH?  Yes, it’s me- the girl you had to reimburse 3K several years ago after you drug your feet on paying bills in a timely fashion which forced me to make the painful decision of put it on the credit card vs. let it go to collections.  And then I (gasp) continued to follow-up with you because I’m pretty sure you assumed I would just pay off the balance and forget it. But let me tell you something you probably already know: I can beat the heck out of a dead horse.

And let’s talk about lab work.  A big chunk of that bill in the past was just that.  You have this nifty little loophole where you won’t pay for labwork that’s drawn more than 5 business days OUTSIDE of the appointment.  OUTSIDE, not AFTER.  So say your doctor likes to have your current labwork in front of her AT your appointment.  Would it not make sense that she gives you orders to have it drawn 3 days before?  Which falls less than 5 business days OUTSIDE of your appointment.  But someone in your corporate office interprets it to be (and from a calendar standpoint this is correct) more than 5 business days AFTER your last appointment.  

Seriously, we fought about just that for months.  OUTSIDE vs AFTER.  And the policy says OUTSIDE.  And I WON. I call that my Elle Woods moment.

Did you like the letters I wrote to the insurance board?

I realize I sound kinda psycho about this.  But put 3K that you don’t have on a credit card with the realization that the person who’s supposed to pay for it is trying with all their might not to and see how you feel.

Very defensive.  

I am feeling better.  True to form, the finger isn’t looking so nasty but I am taking the picture with me.  I still think it may be time to switch up medications.

Oh God.  I’m going to have to start the process all over with that.  

Those poor CSR’s.