Tag Archives: Stress

On the wrong side of the karma stick

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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.

Trying and failing to not to take things personally

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

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

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

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

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

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

It was a 7 hour drive.  One way.

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

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

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

And then the reception started.

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

But this is what I got:

“So, where’s your boyfriend?”  

“Oh, that was done awhile ago.”

“So where’s the new one?”

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

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

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

“How old are you?”

“30.”

“Ohhhhhhhh…….”

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

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

He never actually said anything about my RA specifically.

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

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

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

But it still hurts.

Date Night

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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?

A Valentine’s Day Poem for my insurance company

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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.

It’s almost that time again….

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So, every year from Thanksgiving on, I focus on how much fun I’ve had that year, how sad I am to leave that year, and a very specific list of things I want to accomplish in the upcoming year. 

This time last year, I had just predicted (accurately I might add) my company was going to tank and had decided that I wanted to move.  I’ll  be honest a year later that the move was more about a desperately needed change of scenery to get my head on straight again than a job.  Having to simultaneously deal with a chronic diagnosis, the shock of the diagnosis, the suicide of a loved one, the fallout/litigation from the suicide, a brother’s deployment, worrying about how said brother was handling said family member’s suicide (happened a month after he returned), friends that were continually putting me in bad situations, and a few douchebags thrown in the mix…is a lot.  And I was being pulled in about 400 different directions which was allowing me to quite successfully avoid dealing with any of them.  I was pretty much just going through the motions.  

My goals for 2009?

1. Get out of Greenville.

2. Get healthy- physically and emotionally.

3.  Eliminate all bitchy and douchey people.

And well…mission accomplished.

 It hasn’t necessarily been pretty. And that’s putting it nicely.  Ironically, in spite of the physical, the hardest part has been #3.  I wound up in tears on my birthday because of someone and  (3 weeks ago!) was called” a spoiled little girl who uses guys to fill a void and feed an ego.”   LOL. Taking a step back now, I wonder why in the world I was even friends with several people in the first place and oh dear God, isn’t the saying “you’re only as good as the company you keep?”  

So, walking through Target this morning and seeing Christmas decorations threw me back into thinking about 2009 and what I want from 2010.  

2009 has sucked.  Totally. I’m not sad to see it leave. Sure, I’ve had some moments of pure fun and sure, I accomplished my goals and sure, I have totally set myself up both physically and emotionally to move on with my life, RA and all, better than I ever could have in Greenville with the circus down there.  But getting to that place and finally dealing with all that crap has been extraordinarily painful.  But painful in a good way….it needed to happen because I feared it would come down to deal with it now or massively implode at some point in the future.

I’m at a point where I’m ok with myself and I’m ok with the things that have happened to me. But I still feel a little breakable and I’m not willing to put myself in any situation that involves emotional stress or drama.

So rather than put pressure on myself with a very specific set of goals for 2010 that I will continually beat myself up about, I only want this: to finally be able to move on from ALL above situations and to finally feel like myself again.

The answer is YES.

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Normally, I get a huge kick out of reading the search terms that bring people to my blog.  Some of them are absolutely hilarious and  strangely inappropriate.  But today, I wish I had contact info for the one I just saw.

“Does RA ever get better?”

Yes, my friend, it does.  

It is such a shock to get a diagnosis like that.  I could expound on that forever but you all know exactly what I’m talking about.  

My first reaction to it was deny, deny, deny.  And then take a long boat ride down my favorite river in Egypt.  And then more denying!  

But eventually, once the shock wears off and the treatments kick in, you get some relief.  And once you start to get the physical relief, you can begin to search out the emotional relief.  

It is entirely possible to live a very fun and full life with rheumatoid arthritis.

So yes, it does get better.  Virtual hug!

An Open Letter to my Future Rheumatologist

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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!