Tag Archives: Quirks

Dating, Shopping, & RA

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A couple of my friends have taken it upon themselves to set me up with every single guy they know.  I appreciate it…I guess.  No, I appreciate the thought. But you have to understand that right now dating for me is like going shopping with my mom: show me the shirt (single guy) and I’ll tell you what’s wrong with it (him.)

There’s actually a lot of overlap between shopping and dating.  Think about it- the reasons you don’t buy a pair of pants are the same reasons you ditch a dude.  Too tight.  Too baggy.  Not scuffed up enough.  TOO scuffed up.  Too sparkly.  Looks too young.  Definitely too old.  Threadbare.

Ed Hardy.

Yep, that last one disqualifies both gentlemen and any type of clothing. I am not interested in dating or wearing anything that looks….airbrushed.

So throw all of those choices on someone who knows exactly what she wants and therefore tends to be pretty selective but who also doesn’t have a freaking clue what she wants because she has really had her heart stomped on in the past which then has made her selective to the point of snobbery.  AND THEN…BECAUSE IT’S APPARENTLY NOT COMPLICATED ENOUGH…AND BECAUSE SHE CAN DEFINITELY HANDLE YET ANOTHER THING ON HER PLATE…

Mix in a chronic illness, you know, just for shits and giggles.

Which makes a snobby selective cautious girl a REALLY FREAKING PARANOID snobby selective discriminating girl.  I discriminate against Ed Hardy. And ‘chewy’ hair.  And guys who I don’t feel I can ‘trust’ with RA.  Although, admittedly I screen most of them out before it even gets that far.  You know, the guys who are not scuffed up enough or too scuffed up.

So now imagine you’re shopping with your mom and you have all these choices for jeans but all you want is a simple pair of jeans THAT FITS but even if you find that perfect basic pair, you may still wake up one morning WITHOUT your jeans but instead with a tattoo.  And not just any tattoo but a Chinese character tattoo that you think means “peace” but actually means “taco” because let’s face it, you don’t know Chinese so someone could totally play that trick on you.  And now you have “taco” on you for the rest of your life.

And that, folks, is what dating with a chronic illness feels like for me.

Also known as why I’m still single so please stop setting me up with these admittedly nice guys that I will forever have to avoid until I tell you I want to be, please and thank you.

Crazy Prednisone Dreams

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I have weird dreams when I’m on Prednisone.

Granted, I’m in the process of tapering it off because my face looks like a damn jackolantern…but the dreams still continue and probably will for a little while longer.

A couple days ago I woke up in panic complete with flailing arms because I very vividly dreamed that there was a strange man standing over me.  Awhile back, I dreamed that Oprah was the mother of Michael Jackson’s children.

Um.  Okay.

I can’t figure out where the Prednisone dreams come from- normally I can trace my dreams to events of the day or tv shows I watch before bed.  But Prednisone dreams are just all over the place as far as rhyme or reason is concerned.

Last night, I dreamt that I was on an episode of ER.  And a specific episode to boot.

Strange…I haven’t watched ER since probably high school.  I used to watch Grey’s Anatomy but am more inclined to watch House now because the doctors on Grey’s seem to always kill their patients whereas patients on House tend to survive the episode.   It’s just a quirky personal preference stemming from the fact that I have health problems and don’t want to give myself a complex about having to go to the doctor.  But I’d still love to know why I dreamt about a very specific episode of a show I haven’t seen since probably 1998!

The plot is this: a patient comes in requesting an amputation of a leg (I think) and they put him on a psych hold.  Another patient is brought in by ambulance after having an accident with a chainsaw and, of course, brings said chainsaw.  One thing leads to another and the psych hold/would be amputee commandeers the chain saw and becomes an actual amputee.  Everyone bemoans the whole tragedy but the new amputee is fine and there is some discourse about how the patient felt a disconnect with the leg he so unceremoniously lopped off.

So I woke up and thought…well, that was random.  And my next thought was…I totally get it though.

I sure as hell feel a disconnect from some of my joints.  Especially when I’m flaring like I have been.  I think it makes it feel like less of a betrayal to me although I do still feel that.  A lot. And what if the patient had some excruciating condition on that leg that was completely unresponsive to medication and removing the leg would end the pain?  I realize that it was a psychological thing in the actual episode but taken from a pain perspective, boy do I understand.

Seriously, if someone told me that I could stop my RA pain forever by just removing said joint, I know I would seriously consider.

I also know that, in my case, I would have to lop off joint after joint and would end up resembling the Black Knight from Monty Python with WAY MORE than ‘just a scratch.’  And that even then, I would still have the fatigue and everything else to contend with.  Also, I would probably end up with vicious phantom RA pain because that is how my luck tends to run.

That would really suck!

Wow.  This has ended up a little more ‘dark’ than I intended.  I’m fine- I’ve actually had a very good weekend.  I just thought it was an interesting scenario.  Thoughts?

Here’s to hoping tonight’s dreams feature subject matter that is a little bit more warm and fuzzy!

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.

Spring Cleaning Confession

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Oh the things you find when you are cleaning out the closet!  And oh the things you get attached to and probably should get rid of but just can’t bring yourself to do so! 

I will be the first to admit that I sometimes get very attached to random bizarre things. A certain Lion King coffee cup I’ve had since middle school that was my first foray into “I’m so grownup that I’m going to drink coffee and be an adult dammit and you’re going to recognize it”, a pair of white denim capris that I would never wear anymore but were my “skinny” pants and keep to try on to keep myself in check, and then these…

When I was first experiencing symptoms, these were the only things that were comfortable.  And wear them I did as evidenced by the fact that they can now “smile” at you.

They were purchased as a gag Christmas gift from my brother right before he went to Iraq.  And let me tell you, I was even more attached to a number of things he gave me while he was there.  One of them being a ficus tree.  No lie.  I guess to me that if I kept them close to me (and kept the tree alive) that I felt like he wasn’t so far away and that he would be ok.  After he got back, I let the tree die and definitely lost attachment to the other things I had kept close.

But I still couldn’t get rid of these silly slippers.

Slippers logo’d with a team I don’t really root for.  Slippers with a good two inches of foam built into them.  Slippers that made my early time with RA a little more bearable.  Slippers that made me the butt of jokes with my friends.  Slippers that I haven’t worn in quite awhile because I’m not in pain anymore. Slippers that obviously mean something to me…but I’m just not sure what.

Slippers that I just put back in the closet.

Traveling with RA: Success! Finally!

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Traveling with RA can be a pretty unpleasant experience for me. Once, I went to the beach on methotrexate and got so nauseous at dinner that I had to leave.  I got sick and cried myself to sleep.  Then I went to the mountains and was so stiff and uncomfortable with the cold and snow that I ended up leaving early.  Again, tears.  It’s just so unfair that I can’t always enjoy the same things that everyone else gets to.  Sometimes I even dread it.

Last weekend, I went to Baltimore for the wedding of one of my favorite people and to hang out with a lot of my other favorite people.  I was absolutely determined that RA was not going to get the better of me.  And…it was an absolute blast!  Someone told me earlier this week that “everybody just looks so happy in the pictures” and they are right- and that was the whole weekend, not just for pictures.  I could tell you story after story about how much each of these ladies means to me….but that’s a whole separate post about support systems. They mean the world to me. Sorry I’m gushing but seriously, they rock. Wedding 

 

I slept well both nights- which is unusual for me in a strange bed.  I was able to still be comfortable even with pouring down rain and cold- I was really stiff Sunday night but that could’ve been from sleeping on the plane.  I haven’t restarted my methotrexate yet (did this on purpose so I could have alcohol) so I didn’t have much trouble eating.  Dancing?  No sweat.  Flip flops in my purse!  Scariest part of the weekend- walking down a steep hill in spike hills in the pouring down rain.  I had visions of my butt hitting the cold, wet concrete and somehow hurting my hands….but I didn’t.  I will admit that I did hit a little bit of a wall on Saturday night after the reception- but I think someone without RA would too after flying, staying up late, dancing like crazy, and just having a lot of active fun.  And it wasn’t the bone crushing mental fog inducing fatigue I usually experience but more of a I MUST EITHER SIT DOWN IMMEDIATELY OR GO TO BED IMMEDIATELY.  

Sure, Monday was hard.  I got up late and went to bed early.  But this is the most successful trip I’ve had since being diagnosed.  No crazy “I just don’t have the energy to get out of bed but did anyway and spent the rest of the day in a hateful mood”, no pain, no vomiting, no having to skip out on things because I just don’t feel great.  Whew!

What did I do differently?  I actually planned for all of these things to happen. Seriously- I convinced myself that I was going to feel like crap.  I started taking Airborne, Vitamin C, and Zinc supplements several days before.  I even considered getting a B-12 shot the day before I left.  (I didn’t though- didn’t have time.  But may in the future.)  The night before I left, I went ahead and started taking Aleve.  I had Thermacare heat packs, Biofreeze, and Prednisone with me.  I don’t know if it was the whole immune system jolt I gave myself or the whole “if you wash your car, it’s going to rain” thing that seems to be true of my life, but someway somehow I was able to finally enjoy myself in spite of RA.

Now, if I could only see my peeps more often.  Hint, hint.

The worst response EVER

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I’ve been talking more and more to my friends about my RA- they’re awesome and want to know as much as I’m willing to share which is somewhat of a shock to me.  Did I say already that they’re awesome?  Anyways, one of them asked me how people react when they find out about my diagnosis and I was reminded of this gem that I don’t think I’ve told you guys about.

Allow me to first give you some contextual information.  I may or may not have been attending a lunch meeting about volunteering for an organization that may or may not  be arthritis focused.  I may or may not have volunteered through email to help organize a silent auction.  I may or may not have been nervous about attending because this may or may not have been the first time I had really admitted to anyone about my RA. (After a year and a half of being pissed off at the world, I thought it was time to try to channel my energy into something positive.) And this person’s response may or may not be the sole reason why I may or may not have done a damn thing.  Let’s just call it the perfect storm, shall we?

Meeting Organizer:  Let’s go around, say our names, where we work, and our connection to the organization.

Amanda:  Hi, I’m Amanda, I’m in outside sales, and I’m a Rheumatoid Arthritis patient.

Older Lady Next To Me:  (Audible gasp)  AND YOU WORK???

Voice in my Head:  No crying, no cussing, no crying, no cussing.  

I was very much taken aback to have such an uninformed response in what should be a very well informed audience.  I still want to kick myself for simply nodding that yes, I do indeed work rather than giving a meatier answer that talked about meds, age, diet, working with my doctor to achieve goals and the fact that because I define myself so heavily by professional success, I would be in a very bad place if I couldn’t work.

I’m such a nerd that I really did go home and create a 30 second “elevator speech” in the offhand chance I should ever encounter said situation again.