What to say to illegal HP parkers?

February 15, 2012

Anger.  Disbelief.  More anger.  How can someone be so selfish, so arrogant, so self-absorbed that they think it’s ok to illegally park in a handicapped parking space?

I’ve written about this before and I’m sure one day I’ll write about this again, but it’s an important topic and one that seems to affect me often.  This time, it was last night.  I was in a lot of pain, but I was determined to go out.  For one thing, I hadn’t left the house since I got home at noon the day before.  That’s a long time to be stuck indoors.  Plus, if this followed its usual pattern, there was a good chance things would get much worse soon and I might not be able to leave my apartment for several days.  Besides, it was a singles party on Valentine’s Day!  Where better to enjoy some flirting?

I could barely walk, so taking the T was out of the question.  I knew that walking to the car would be tough, but if I could manage that, then I’d just have to hope I’d get a parking spot near the place.  Hopefully it would be the handicapped spot directly in front.

As I arrived at the place, I saw the car in front of me take the handicapped spot.  Damn!  There were no others, so I circled, and finally parked in a handicapped spot a block away.  It was not a fun walk (actually, limp) to the place, but I made it, and knew I’d just have to be careful to leave early enough that I could make it back to my car again.

After going through all of that, imagine how I felt when I walked past that car and saw that there was no decal on the license plate, and no placard on the visor or on the dashboard!  What gall!  I would have yelled at them, if I had any idea where they were.  I wanted to leave a note on their windshield, but I was too angry and I didn’t have a pen or paper.  They must have seen the sign – anyone who parks in Boston knows to check out the many complicated parking signs, and this one was pretty obvious.  So what then, they assumed it was ok?  That no one would notice?  It took 20 minutes for me to circle around twice, finally park, and then walk back.  And I sure as hell noticed.  How many others would need that space while this jerkwad was squatting there?

There is NO EXCUSE for illegally park in a handicapped parking space.  None.  Zilch.  Zero.  Nada.  It will NEVER be ok!

So back to the part where I didn’t have a pen and paper.  I’m thinking that I should start carrying flyers in my purse and in my car and leaving them on the windshields of offenders.  I’m ready to do it except…. I don’t know what to say.  Crazy, right?  Sure, I’m a talker and a writer, but this is different.  I want to come up with something that gets their attention and makes them actually think, or at least cringe.  I’m thinking I should go for guilt.  Here’s my first draft:

Because you parked here, someone who needs this spot can’t have it.  Be glad you’re healthy enough to not need it!

But I ran this by a friend and she said that it’s too earnest.  So what instead?  Your ideas please!!!  Post a comment here, tweet me (@CIRants) or send a note (msrants at gmail).  What can I say that will simply get someone to think a bit before they do it again?

I promise you, when I get the right line, I will print it on brightly colored paper and stick it on the windshield of every offending car I see.  I can’t wait to get started.


If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

Time to stop editing my health

February 14, 2012

“Can you come to brunch on Sunday?”  Gee, why does that suddenly seem like such a complicated question?

I was invited to a potluck brunch for this weekend, and as I was giving my answer, it occurred to me just how many different answers I constantly give to that same kind of invitation, depending on who’s inviting me and how I feel at the time.  Right now I’m starting to flare (well, a flare within a flare) and that makes this weekend especially unpredictable (or maybe just predictable in a way I’m refusing to believe at the moment.)  There’s always the question of how much to share, and what do I really want this person to know?  And then I realized the most important point of all.  But I’ll get to that.

Invitation: I want to be there, but I know I might not be able to make it.  What to say?  I need an excuse, in case I don’t show up.

Close friend: I’m starting to have some bad pain in my foot, so I don’t know if I can make it, but I’ll be there if I can.  I’ll let you know, but it might be at the last minute.

Everyone else (these answers hint at the truth for less-close friends, and are totally uninformative for acquaintances): I may have to [insert weak excuse here], but I’ll try my best to be there.

Preparing: I don’t know if I can go, but even if I can, it might be tough.

Close friend: The pain is worse.  If I make it, I won’t be able to bring anything for the potluck.  Cooking isn’t happening now, and I wouldn’t be able to walk through a store to pick something up.

Everyone else: Um, by the way, is there parking at your place?  Yes, I’d normally walk, but I, um, have to be someplace afterwards and I’ll need my car.  Oh, and what floor do you live on?  Is there an elevator?  Oh, just wondering.  I, um, have a bad knee.

Day of: If I can make it, then all’s good, and if anyone comments on my limp or other visible symptoms, I’ll just make something up.  But if I can’t make it…..

Close friend: Damn this fucking pain!  Hopefully I can make it next time.  I hope you have a great party – let me know how it goes!

Everyone else: [Short email] I couldn’t get out of that other thing [mention previous weak excuse].  I won’t be able to make it, but thanks anyway.  Hopefully I’ll be there next time!

How do you handle this kind of thing?  I do this because it’s the best I can think of, but what I wonder what other people do and if there’s a better option.  I hate hate hate editing myself.  In all other parts of my life I just say what’s on my mind and it’s so much easier.

And then the most obvious point came up and whacked me on the head: Why do I do this?  Why do I make up different stories for different people?  Why not tell everyone the truth?  Obviously I wouldn’t tell a stranger the whole truth – that’s way too complicated.  But why not just say that I have pain sometimes, and right now it’s acting up, so I can’t predict if I’ll be able to make it to the brunch on Sunday.  Sure, they may have a lot of follow-up questions, but if I’m not in the mood to deal with it, I can always brush them off.  I can say that I can’t talk about it now, but I’d love to set aside a time to go over it with them later.  Why not?  

I think that I may just have to try this from now on.  It may not be easy, but balancing out the different lies and half-truths isn’t so easy either.  Besides, I’m generally a very honest person.  People think I’m honest to a fault.  The one thing I lie about is my health, and that’s just stupid.  I don’t have the physical, mental, or emotional strength to deal with that kind of crap, so why am I wasting my precious energy on it?  So for the next few months I’ll try telling the truth to everyone.  I can’t wait to see how that goes.  And it’ll have a fantastic added bonus: I won’t have to worry anymore about when and how to broach the topic – everyone will already know!

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

Spreading the word on chronic pain and chronic illness

February 13, 2012

I found this great web site the other day, How to Understand Someone With Chronic Pain.  This is one of the more accurate and insightful sites I’ve seen.  The problem is, it only works if people read it.

I emailed this site to some specific people, I posted it on Twitter and on Facebook.  I’ve told people about it.  But I can’t force anyone to read it.  I’ve seen other good sites and videos, but again, they only work if people read the pages and watch the videos.

For the people important to me, I think that if I email them the site and tell them that it’s important to me, they’ll read it.  But then, these people already have a better understanding than most, since they’ve watched me deal with this for 20 years (or as long as they’ve known me.)  How can I get their friends and acquaintances to read it?

Really it all comes back to the same old issue: ignorance in the general population.  I’m tired of people suggesting that I’ll feel better if I get more exercise, or that I just need a good night’s sleep, or that I can’t really be doing that badly if I’m acting or looking so good.  I know that at some point I have to ignore people and just not care, but that can be very difficult to do.  I’ve learned to ignore strangers, but what about friends of friends?  What about coworkers?  It gets complicated.  We all have our thresholds, and lately I’ve been hitting mine.  A lot.

There’s no real point here, only that I hope everyone who reads this will email/post this site, or a similar one, to the people they know so that we can spread the education.  There are millions of people with chronic illnesses; we can’t pretend otherwise.  Let’s spread the word!


It would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

The stress of handling stress

February 11, 2012

“Avoid stress and get more sleep.”

That was my doctor’s advice when I was first diagnosed with an autoimmune condition.  After 11 years of symptoms, I finally had some idea of what was wrong, and the best he could do was “avoid stress and get more sleep”???  Was he kidding me?  After all, if it was so easy to do, everyone would do it, right?

Well, it’s not easy, but it is possible.  And I’m pretty good at it, especially for an uptight type A control freak.

But sometimes stress isn’t so easy to avoid.  There’s the stress of meeting a work deadline.  There’s the stress of handling these damn CIs.  But then there’s the stress involved with the illness or death of a loved one.  I’m doing pretty well with the first two, but this last one is really a problem.

I know what can happen if I let the stress get to me, but when the doctor says a loved one could die “any day now”…. well how is anyone supposed to not feel stress?  Today was a tough day.  She was in the hospital for the second time in just a few weeks.  And it was also the anniversary of the death of another loved one.  I couldn’t visit the hospital thanks to my crappy immune system, so I stayed inside, did laundry, watched tv, and worked on a project that I know she’ll love.  I just hope she’s around to see its completion.

Anyone would feel stress at a time like this.  I just have to find a way to handle it the bet I can.  Because I know what the stress can do… and I have to somehow make sure that doesn’t happen.


It would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

The double standard of pursuing treatments

February 9, 2012

But they must have some idea how to treat you!?

I’m so sick of hearing that, but somehow I found those words coming out of my mouth today.  I hate when people say that to me.  I’ve accepted that there’s no straightforward treatment for my CIs, that the best we can do is slow things down.  I’ll never be “healthy.”  I can handle that.

But I hold my friends’ health to a different standard.  Sure, the doctors can’t cure me, but they must be able to cure everyone else!  Besides, my friend has a diagnosis.  They know what’s wrong with her!  Why can’t they fix it?!?

I get very protective over my friends.  She knows this.  And she’s known me for ages, since years before I had any symptoms.  So when I made that comment, we both just broke out laughing.  Imagine, Ms. R of all people suggesting that there must always be a cure!

It’s a double standard of sorts, but one that I’m fiercely protecting; I want my friends to be cured.  All of them.  Even if I never get better, that doesn’t mean they won’t either.  I want them to keep fighting for results.  And I’ll be there to support them the whole way.  I just hope they don’t give up.

It would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

The best kind of pain

February 7, 2012

***Warning: I get a bit sappy when I talk about my friends’ kids.  But hey, that’s an auntie’s prerogative, right?

When I was a kid, every winter my family would go cross country skiing once or twice.  We built snowmen and went sledding throughout the long New England winter, but because we went skiing so rarely, it was a real treat.

Every trip was different, but they all had the same excitement: the drive out there, getting fitted for skis and poles and boots, relearning everything we’d forgotten since the last time, breaking in the middle for hot chocolate, falling over in the snow.  It was a magical time.

Until the next morning.

Going only once or twice each winter meant that my skiing muscles never got built up.  Every morning after a ski trip, I’d wake up sore as hell, and all day long it would only get worse.  The first time it happened, I thought something was wrong with me.  After that, I knew what it was, but it was still a tough couple of days.

The other day I woke up with that same feeling.  It was glorious.

A close friend had a baby recently and I drove across the state to visit them.  Before this I knew that the Plaquenil I started last summer
was working, but only because I could climb up more stairs before my knees gave out.  This day really proved it.  First, I held the baby.  A lot.  Much longer than I could with her first two kids.  There’s nothing like holding a sleeping newborn; they’re so incredibly peaceful.  My wrists and hands were sore afterwards, but I could tell the pain wouldn’t last long (thankfully I was right about that.)  Then I was playing with the older kids on the floor, and before I knew it, they were both climbing on my back at the same time!  I never thought I’d be able to do something like that!  It was fantastic.  I’ve always enjoyed being fun auntie Rants, but it was in a calmer way – coloring and building blocks and shaping clay and reading.  This was the first time in their lives that we’d been able to roughhouse together.  Did I mention it was fantastic?  Sure, I said no to them when one wanted to sit on my back and have me crawl around; I know my limits.  But having them climb on me while I wiggled around on the floor (on purpose – they loved it) was really…. am I overusing “fantastic” yet?  And what amazed me was that I really didn’t feel any pain.

Until the next morning.

Actually, though, I wasn’t really in pain the next morning, just sore.  Very sore.  Muscles hurt that I didn’t know I had.  After all, I had barely used them in many years, so I really couldn’t blame them for acting out at me.  It was a rough day, and the next day was even worse.  And I loved it!  I’d do it again in an instant.  Playing with the kids was a dream come true, but the soreness was good too.  Have you ever gone to the gym, done some great new exercise, then ached the next day?  You know how good it feels to know you’re building up your muscles?  That’s what this was!  Only I never thought I’d ever be able to work these muscles again.  I thought that for the rest of my life, they’d remain barely used.

Ok, this isn’t perfect.  My energy still sucks and I felt exhausted for days after that trip.  But this shows there’s hope.  For more than nine years, I was in pain all the time.  I mean all the time.  24/7.  It got to the point where I couldn’t remember what it felt like to not be in pain.  Now I have pain every day, but only for parts of the day, and to me, that’s magical.  It gives me hope that my energy could rebound too.

And yes, I’m realistic.  One day the pain will get worse in all the places where it’s now a bit better.  That could be in a year, or 10 years, or 50 years (longevity runs in my family, even with the autoimmune crap), but I’m sure it’ll return.  For now, I’m just living it up.  And for me, that means getting on the floor and letting adorable kids climb all over me.  And if I’m sore the next day, remembering their laughter makes it all worth it.  It’s the best pain I’ve ever felt.

Please share this on Facebook, Twitter, etc. This blog is new, and it would be great to have it passed along.

Oh social life, wherefore art thou?*

February 5, 2012

I should be at a Super Bowl party right now.  Should be.  But I’m not.  Damn body.

Every year my friends host a party.  Most years I go.  Ok, to be honest, I don’t actually watch the game, but I do love the party.  Good company, good food, and sometimes I watch the commercials.  I missed it last year because of car problems, but I was determined to go this year.  All weekend I was thinking, yes, my body has been through a lot in the last few days, but I’ll still be able to make it, right?  WRONG!

Friday was the long drive across the state, playing with kids, then driving back (details in another post.)  Friday night I slept better than I have in ages.  Saturday was taking care of an injured family member, but only for a few hours, because I knew I needed rest.  Today was rest rest rest all day.  But I woke up exhausted, felt sleepy all day, then passed out in the afternoon.  I woke up on the couch right around the time that I was supposed to be leaving for the party.  Oops!  In that moment I knew I wasn’t going.

So here I am, sitting at home, hearing the occasional shouts from neighboring apartments, and wondering where my social life went.  Sure, I hadn’t been going out every night before, but over the last several months, as I’ve felt worse and worse, my social life has edged towards zero.  A friend asked me out to dinner yesterday and it suddenly hit me that it’s been a loooong time since I’ve gone out to dinner with anyone.  Probably more than a month.  And even yesterday I didn’t feel up to it.  The last non-family party I went to was New Year’s Eve, and before that…. I really don’t remember.

Tonight was supposed to be easy.  A simple drive, a laid-back atmosphere, friends and acquaintances who I like and who I haven’t seen in a long time.  Tonight was going to be a chance to get out an socialize.  Tonight was going to be fun.  I’m starting to forget what fun is like.  Tonight was going to be a chance to get out and be around people.

And then it wasn’t.

Here’s hoping that next year is better.  That next year I’ll be at the party.  That next year I’ll have a social life.  Let’s hope.

*Note: Yes, the title is a takeoff on the famous line from William Shakespeare’s Romeo and Juliet.  It’s not as poetic as his version, but then, I’m no Shakespeare.

Please share this on Facebook, Twitter, etc. This blog is new, and it would be great to have it passed along.

%d bloggers like this: