Decisions, decisions

I’m so tired of having to make them.

10 years ago, the weightiest decision I had to make was which party I was going to go to.  I mean, seriously people, that was a MAJOR conundrum.  The guys at the Farm were always way hotter but the guys at the House of Big Decks always had free beer…what a quandry!

If you’d told me then that at age 31, I’d be on a medication that’s a low dose of chemo, another one that’s really bad for because it can kill bones and other things, and deciding between two different treatments that are both 8K-10K per year…I would’ve smiled at you, turned away, rolled my eyes as far back in my head as possible, called you crazy and went back to my beer.

What a difference ten years makes!

At my follow-up with my rheumy on Thursday, they approached me about another study.  Yes, I’m supposed to start Orencia last week. Actually, I was supposed to start it beginning of December. But who’s keeping track! I had it scheduled and everything.  But the insurance verification trolls made me delay it yet again.  SO FRUSTRATING.

Anyways, it’s a Phase 3 study by Eli Lilly for a yet unnamed drug that’s showing a lot of promise.  For the first six months, you get either one of two different dosages OR the placebo.  After the first six months, everyone gets the drug for five years. It’s self injectable every two weeks and would require me to stop by the doctor’s office once a month to pick up the injections.

In all honesty, my first response was HECK no.  I saw no benefit for me with the first study I did.  I’m certainly not going to stay on Prednisone for five years- you are batsh*t crazy if you think that’s going to happen. BUT, after reading on the new Lilly drug, learning that you can taper off of Prednisone during the study and doing math on how it would help me financially to not have to pay for co-pays, x-rays, labs, or meds for five years as well as five years of not having to fight with that douchewad known as Blue Cross Blue Shield….well, that right there is something to think about.

The fact that it’s less of a time commitment (on paper) than Orencia and the fact that after the first six months, I’m guaranteed to be on the drug…that’s even more to think about.

I’m torn but leaning towards doing it. I think many of us would say that new medications are scary, not from the side effects, but from the ‘what am I going to do if this doesn’t work?’  It took awhile but I had originally married myself to the idea of being on Actemra. Then my doctor wanted to wait on that and try Orencia first.  I was upset about that until I read more about it and finally agreed with him.  So now I’m married to the idea of being on Orencia.  And now that’s maybe going to change too.

It’s just scary. I think my doctor could see it on my face when we were talking about it.  I got quiet (which doesn’t happen often) and he just looked at me and pointed out that all the drugs that have made it to Phase III in the past 10 years have been very successful.

So now I feel like I’m kinda back to square one without a plan.  Also, I feel more than a little bit jerked around by the insurance trolls.

Am I really old enough and smart enough to be making these kinds of decisions???

It really doesn’t feel like it sometimes.

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.

Returning to the land of the living

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

Tequila is gluten free.

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.

This flare is really getting to me.

I finally got into the doctor on Thursday.  

“Dr. D, I’m having inflammation and pain in new joints.”

“Like which ones?”

“Um, how does that kids song go?  Oh right, HEAD, SHOULDERS, KNEES AND TOES, KNEES AND  TOES. Ok, maybe not head but also wrists, hips and fingers. And also, I am unable to comfortably do the movements to the aforementioned children’s song right now.”

“Hmmm, and on our last visit I thought you were really starting to show improvement.”

“Sure.”

He examined me and agreed that things have really regressed.  We are pricing out two options with my insurance company- either Remicade or Actemra- and hope to have a final decision made later in the week.

“Is there anything else I can take in the interim?  I’m really having a hard time functioning?”

“Are you not taking the Tramadol I called in for you last week?”

“No, I do not take pain medicine.”  

Yes, you read that correctly. I believe that pain is a good warning sign.  I don’t want to NOT feel pain and then do something that would end up hurting me more.  My pain is caused by inflammation- I want something to treat the inflammation. Does that make sense?  

You should probably also know that I worked in a pain control clinic for two summers in college that coincided with the debut of Oxycontin.   Best job ever for two reasons: HOT RESIDENTS who invited me to attend ‘liver rounds’ with them on Thursday evenings and a handful of our patients were so nuts that I never had a boring day. So even though I may joke about pain meds and laugh about the potential of medicinal marijuana for RA patients, I’m actually pretty adamantly against it on a personal level.   I do realize that I am most likely in a different league of patient than what we saw there: our worst drug seeker was the alcoholic who passed out drunk on the train tracks and lost his legs.  True story- only in the south….

“Well, I don’t want to give you anymore Prednisone- I know you don’t like taking it and I know the problems you’ve had in the past weaning off of it.”

“I’m not asking for Prednisone.  It’s just that I’m taking x Aleve a day to get any relief from the inflammation and I don’t think it’s good for me.”  (imagine eyes bulging out of his head and no, I’m not willing to admit the number but let’s just say there’s a limit in the PDR about how many you can safely take in a day and my intake matched just that.)

So he put me on Mobic.  Not really a fun of it but my stomach likes it better.

I stopped at the vending area to get a Coke before my bloodwork because I didn’t have any breakfast and really thought that passing out during/after bloodwork would be pretty sucktastic.  While I was there, I got to peek into the infusion center.  I was actually pretty impressed- it looked like a “real” infusion center, not like a doctor’s office infusion center.  

Bloodwork was a breeze as usual and I was out the door fifteen minutes later.

I’m feeling a little better tonight after 2 days of good rest, good food, and some serious quality time in the hot tub and steam room at the gym.

And now it’s raining so I think it’s time for me to get in bed and enjoy the sound!

Back on prednisone

Why hello to you too, my sworn frenemy.

I love and hate you equally.

I love you because you will give me some relief until my rheumy can get me into to his first available appointment…in June.  (Don’t get me started.)

I hate you because …..well crap, I hate you considerably more than I love you.

I hate you because I only take you when I feel like absolute poo.

I hate you because you prove that it IS indeed possible to gain a lot of weight when you have absolutely no appetite.

I hate you because you make my skin crawl and give me night sweats.

I hate you because you make Aunt Flo come early and give me crazy mood swings. 

Addendum: My coworkers hate you for that second part. And my mom.  And the poor customer service reps at my insurance company.  But let’s be honest- I really don’t care about the feelings of my insurance company, prednisone or not.

I hate you so much that everytime my doctor mentions putting me on you, I cry.

*************************************************************************

Hello frenemy #2.

I do not hate you at all because on Saturday, you will meet YOUR sworn frenemies- full foils and bleach.

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.

A Valentine’s Day Poem for my insurance company

Roses are red.

Violets are blue.

Your customer service sucks completely.

I hate dealing with you.

Mad props to the call center dude who doesn’t really speak or understand English (especially English from the south) who asked me a bunch of pointless questions, put me on hold for 10 minutes, asked me the same pointless questions again and rudely, put me on hold again, and then hung up on me when I asked to be transferred to a supervisor.  

Karma, my friend, karma.

Still waiting on the rheumy appointment and now waiting on refills since my insurance changed on January 1st.  Having to get everything re-referred and re-preauthorized during a flare does not make me the happiest person in the world.

Protected: Gratitude

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An Open Letter to my Future Rheumatologist

Dear Dr. (insert your name here),

First and foremost, let me tell you that I’d so much rather be shoe shopping than rheumatologist shopping.  To put things in perspective, I’ve never gone shoe shopping and left with 5 vials less blood than I came with.  Rheumatologist shopping…different story.

I’m really frustrated.

I think I’m a pretty good patient.  I like to understand and learn as much as I can about my disease state, what exactly is going on in each joint affected, why certain bloodwork is ordered, how my medications work, different options for treatment etc so I can have informed discussions with you.  I do not believe in blind faith as far as medical care is concerned, especially MY medical care.  

In return, I do ask a few things of you.  I expect you to listen to my medical history, understand my goals, respect my concerns, and work with me to find a mutually agreed upon plan.  Specifically, I am open to resuming methotrexate if you are open to me not resuming it.  I’m not trying to tell you how to do your job or play games.  But I am telling you that I’ve had minimal success on it and I would like for you to look at my medical history, think about it, and see if you can come up with a better idea.  That’s all.  If you think it through and still think you’d like me to try it, sure, I’m game. I do realize that practicing medicine is exactly that: practicing.  

But I do ask that you practice- don’t just give me what you give all your other patients.

I don’t think I’m asking the world here and this is not just about methotrexate, although that is a sticking point with me.  I would just like your time and thoughtfulness before you stick me on any strong medication or other uncomfortable course of treatment that (let’s be honest here) you’ve probably never taken yourself and don’t have firsthand experience of trying to function with the side effects of in your daily life.

Here’s to hoping that the next one of you is better!