Tag Archives: Awareness

We’re in good company!

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I’ve been a little upset with myself lately- mainly for my lack of follow through on certain commitments to myself.  The actual diet plan is going…ok.  I’m not cheating as much as I was.  The no caffeine thing…lasted a day.  If even.  The whole “get out of the house and meet new people in this new town you’re living in”….ok but not great.  At times the RA doesn’t help (fatigue, hurting feet, nausea from mtx) but there comes a point where it becomes my excuse too.  That has got to stop!

In the endless quest for inspiration, I’ve been reading and searching online for direction.  I inadvertantly stumbled upon a quote that made me smile and then a story that knocked my socks off.

“I would rather regret the things that I have done than the things I have not.”

- Lucille Ball

I grew up watching reruns of “I Love Lucy.”  I would laugh hysterically at the silly situations she got herself into and loved  the crazy faces and gestures she would make.  I may have even gotten into trouble once or twice for trying to recreate some of her famous slapstick physical comedy which resulted in me having my head swung into a wall.  Explains a couple of things, right?

From seeing her show and reading about her, I can totally see that she lived this phrase to its fullest. 

And then I read that Lucy had Rheumatoid Arthritis.  And she was doing all of these hijinks while feeling the same pains that we all are.  And hiding it.  Can you imagine?  Talk about putting on a brave face x1000!

You can read about it here.

 Looking at everything that she accomplished and knowing that she accomplished it in a time where there were hardly any effective medications and at a time where disability was not spoken about, it makes me very grateful to be dealing with this in 2010.  

It also makes me realize that I am my own worst enemy.  If she can do it, so can I!

A VERY special request.

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First and foremost, let’s support two of my favorite RA bloggers who have been nominated for Best Patient Blog 2009 over at medgadget!  You can vote once a day- need I say more??? :)  So head on over to medgadget and vote for Rheuma Blog and Infinity- it is.  Gotta help our fellow RA-ers! Note: you can only vote once a day from one computer- to vote for both, I (hypothetically) voted for one on my home computer and the other on my work computer.  Not that I would ever advocate working the system.

Second, it’s been a super busy week and I don’t have much to say.  Well, that’s not true.  I just don’t have time to say it.  But to sum things up, I’m feeling better, work is wild, it was 70 degrees last weekend and this weekend we’re forecasted for lots of snow (what???), and the cat has fleas again.

I needed to see someone who looked like me.

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Wednesday, January 11, 2006

“Your x-rays still show no new bone growth on either foot so we can rule out a stress fracture.  Your bloodwork, however, was much more revealing.  Your rheumatoid factor is a 68; it should be less than 20. Your CRP and ESR are also elevated.  These results, in conjunction with symmetrical joint swelling in your feet and hands all point strongly to rheumatoid arthritis.”

Blink.

“I’m going to start you on several medications today.  Celebrex for pain. Prednisone is a steroid that we’re going to start you on a high level and taper you down.  This will reduce the inflammation while the other medications start to work.  Methotrexate is a chemotherapy drug.  It can have some pretty nasty side effects so we’re going to start you low and build you up to 8 a week.  I’m also giving you a combination folic acid and vitamin B to help combat the side effects.”

Blink.  Chemo???

“We’re going to do this for two months and then re-evaluate to see if you need a biologic.  How do you feel about giving yourself shots?”

Blink.  Giving myself shots?  For what?  I don’t even know what it is that I have. Please just let me get out of here.   

I’d never even heard of rheumatoid arthritis.  When I thought about any sort of arthritis, all I could picture were the elderly folks my church youth group would visit with at the holidays and my great grandmother.  I mean, think about it: that’s generally what’s shown in advertising. At the time, I had no clue that there were many types and that they could affect people my age.  

To make matters worse, after getting home from the doctor that day, I decided to “educate” myself on rheumatoid arthritis.  How, you ask?  By using the END ALL BE ALL most reliable and authentic source of all information in the entire universe: ye merry olde interwebs.  Needless to say, I was much better off “uneducated.” I had no idea at the time that there was such a general misconception of what RA is.  To this day, I see pharmaceutical ads on TV and in magazines that are just wrong.  Hello Enbrel ad from 2009- I shall never forget you. But at the time, I took them as fact.

So I cried for hours and then took my raccoon eyed self to the mall where I dropped $200 on the cutest pair of incredibly fugly orthopedic dress shoes.  I remember thinking ‘so, I guess this is life now. So long running.’ Then I decided my best course of action was to hide this from everyone and would continue to do this for over 2 years.

Let’s just say this was the worst decision I could’ve ever made a decision that made everything harder and based on my own uninformed ideas and leave it at that, ok?  

So, what does Rheumatoid Arthritis look like?

Specifically, Rheumatoid Arthritis was 26 on that day.  A friend, a daughter, a sister, a coworker.  Loves running, kickboxing, reading, dancing. Very reluctant to let go of any of these things. Very sensitive and self conscious when she received  a diagnosis that she didn’t think she was representative of thanks to horrible misconceptions.

Except that she was.  Right on the money actually.

Demographically, RA is 20 – 40 at onset and two to three times more likely female than male.  Rheumatoid Arthritis is an autoimmune disorder in which the immune system attacks joints.  It is chronic yet also very treatable through combinations of very strong medications with many patients (yours truly included) able to eventually return to almost normal.

Yet the arthritis the public generally attributes to ALL autoimmune arthritis conditions is osteoarthritis- the condition caused by wear and tear  from aging or overuse and the ONLY one where “just go take a Tylenol” may yield positive results. 

That’s frightening.

“Buckle Me Up!” International Autoimmune Arthritis Movement is an up and coming non-profit dedicated to helping those suffering from autoimmune arthritis conditions by increasing understanding and awareness through education, partnerships, and support.  We are trying to raise money to finance legal fees and startup costs associated with filing 501(c)(3) paperwork.  

I can’t imagine how much this would’ve helped me when I was newly diagnosed.  Having information and support and people to talk to would’ve made everything so much easier and less scary.  And believe you me, it was a very scary and lonely time.  

It would mean the world to me if you would visit www.bucklemeupmovement.com/donate to read more about this and to donate $1.

ARE YOU READY FOR SOME FOOTBALL?

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Last night, I went to the Panthers/Vikings game here in Charlotte.  I went, a little unenthusiastically because, let’s face it- we suck this year.  But I’ve been looking forward to this game all season mainly because I’ve always been a Brett Favre fan and didn’t want to miss a chance to see him play in person.  

Despite the fact that it was FREEZING and that I was wearing so many clothes that I felt like Ralphie’s little brother walking to school in A Christmas Story, I had so much fun because LAST NIGHT WE DIDN’T SUCK.  Shocker, right?!?  Actually, I think the newspaper this morning used the verbage “stunner.”  Whatever.  Same thing.

Anyway, I could go on and on about the morbidly obese Vikings fans who sat near us replete with Viking helmets and attached braids (B- list stripper grade hair extensions if you’re dying to know my opinion) or how well my strategy of keeping warm through numerous hot chocolates laced with obscene amounts of Bailey’s worked or how I learned that my finger joints that are effected apparently don’t like being  constricted with glove liners, gloves and a handwarmer shoved in.  But I won’t.  :)

Nor will I post the many pictures I took on my phone.  I got a really good one of Brett (we had REALLY good seats).  

But I wish my hands that were pissed at me would’ve cooperated fast enough to get the one picture on my phone that I was dying to take.  You see, during one of the breaks, there was a huge ad for the Arthritis Foundation.  HUGE.  ON SUNDAY NIGHT FOOTBALL!  I  drunkenly totally geeked out seeing it on the jumbotron!!!  But maneuvering my willfully defiant and heavily layered hands to unzip my side pocket, pull out my phone, unlock my key guard…..it just didn’t happen.

Ok, so I realize that the ad itself was tied to a corporate sponsor and only included a small blurb on what arthritis is with no mention of Rheumatoid Arthritis and that it  probably was only shown in the stadium but how cool is that!!!

I’ll take it however we can get it.  It’s a good place to start.

Massage Therapy and a breath of fresh air!

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I will admit it: I am addicted.  

It calms me, it soothes me, it relaxes the muscles of my back and neck which bother me, it stimulates an immune response which helps me manage my RA.  I crave time where I am forced to do nothing but chill.  And this takes the cake.

I’ve been to probably 10 different therapists over the years, most of them good, some of them atrocious.  A memorable one would be the guy who chuckled when he had me roll over and got a glimpse of boob.  And proceeded to stare.  Thank you, douchebag- because of you and how uncomfortable you made me, I now only go to female masseuses.  Have fun at the club tonight by yourself with your balding yet spiked hair and Ed Hardy shirt. I bet you like techno music and use cheesy pickup lines.  

I digress.

I found my current one by chance.  A coworker had a gift certificate that he wasn’t going to use.  “I don’t like being touched and I have a problem laying naked on a table in front of a stranger.”  To which I said “I do and I don’t.”  I called, made an appointment and by luck of the schedule, got this one.

Seriously, she is the best one ever.  Not because of her bodywork (which is great) but because of her interest in auto-immune disorders (family member with Webener’s who is on Prednisone and Methotrexate) and the fact that she’s currently studying naturopathic medicine.  

I admit, if you really think about it, that it’s a little weird meeting someone for the first time and five minutes later, you’re laying there with no clothes on.  Somewhat like a frat party?  (Sorry, Mom- totally kidding.)  It’s even a little more intimidating when you have to explain to them that “hey, I have this thing and these spots that if you aren’t careful, you could really hurt me.”  I’m accustomed to having to explain what and where every time I go to the same people.  I’m also very hesitant to let them touch the spots.  In fact, until this one, I’ve never let anyone touch my affected joints.

So, imagine my surprise on my second appointment when she asked to see my hands before we started.  She looked at them and gingerly touched them.  “Ok, you’re a little swollen today.  I just wanted to check before.  How are your feet?”  Wow.  I seriously think I hugged her.

It’s made a huge difference in how I feel.  I’m getting massages weekly like my doctor recommended for the first time ever with no fear of injury.  She is more in tune with my RA than my rheumy is.  She has picked up on the spots in my wrists that bother me sometimes, which I’ve never mentioned, and this week made me happy by saying “Your fingers really look much less swollen lately.”  I had noticed it too but hadn’t said anything to anyone because I thought it was just me being hopeful.

She’s given me advice on supplements-where to buy and brands to try, recommended a yoga teacher who can help me modify things when I need to, and is encouraging me to try acupuncture.  She’s familiar with my medications and is very empathetic on their side effects.  We talk about diet and foods that are by nature inflammatory.  

 I’ve had better conversations with her than I have with my doctors.  And in some cases, more well-informed conversations.  I really believe in treating the whole person, sometimes I feel that my doctors don’t.

I swear I had a point here.  I’m excited.  I’ve always wanted to approach my treatment as a partnership.  I only want people to understand where I’m coming from and where I want to go.  I want to get a massage as often as my budget allows.  I only want my goodies ogled in an appropriate venue. I want to have clinical conversations about my rheumatoid arthritis that don’t make me feel like crying.  And for now, I have that.

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!