Tag Archives: Awareness

World Arthritis Day

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(Note: OH.MY.GOODNESS.  Auto post failed me  today.  This was supposed to post at midnight last night.)

So it’s World Arthritis Day today, Amanda.  What would you like?

I’d really like to NOT have arthritis but apparently that doesn’t seem to be an option nowadays so let’s see…

I would like…(rubs chin)

-a massage

-CARBS

-my way with James Franco

Hmmmm.

I’d also like an easy button.

I realize I will probably only get the first two things on my list this year.  But I’d like to think that we’re approaching my ‘easy button.’

You see, an easy button to me would not just be hitting the big red buzzer and immediately being Rheumatoid Arthritis free.

For me, an easy button could involve never having a lay person scratch their head and inquire if I have tried ASPIRIN yet.  Well geez.  I have a rheumatologist, a nutritionist, at times a physical therapist, and at times a shrink.  You know, Mr. Lay Person, I think you’re on to something there.  I don’t think that those four very well educated minds have ever thought of seeing if they could control my symptoms with Aspirin.  Nope, they just skipped straight to low grade CHEMO for shits and giggles.  FOR THE LOVE OF GOD.

An easy button could involve never having someone attempt to commiserate with me by offering up the stiffness they have in their elbow from all that tennis.  Yep, that’s how my pointer fingers hurt.  From all that tennis.  The best part is when I go on a short run and come home to immediately have my right jaw start aching.  I’ll spend the whole next day resting my jaw.  Then my right knee will hurt for a couple hours. No reason. Just because.

Damn tennis.

An easy button would make it to where I never have to explain to someone that it is INDEED possible to sleep 12 hours straight and still be exhausted.  Mind numbing, bone crushing, can’t put sentences together exhausted.  Tips hat to methotrexate.  Unless you’ve been there, you have no clue how tired I can be at times.

Please note that I’m trying to make a point.  I’m doing ok right now.

But we have made progress.  Just last month, the Arthritis Act passed the House of Representatives.  Companies are taking a more active interest in both marketing to our specific patient population as well as taking time to make sure they are accurately portraying us in the media.  Important steps certainly but not yet enough.

In honor of World Arthritis Day, please help me move closer to creating my easy button by participating in IAAM’s global awareness event.

IAAM, the 1st nonprofit in history that focuses exclusively on the 7 Autoimmune Arthritis diseases, is asking you to participate in this global awareness event by forwarding and posting this newsletter and, if possible, purchasing one of the 3 awareness designs shown on the publication.  These items can be purchased by visiting the IAAM website at www.IAAMovement.org.   (The awareness designs range from $5-15 with 100% of the proceeds donated to IAAM to create future awareness programs).

 

One lovely blog…

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I’m kinda embarrassed because there is most certainly a delay in me getting to this.  Bad blogger, stupid flare, bad blogger!

I was nominated for the One Lovely Blog Award by both KirBir over at  Not Standing Still’s Disease and by Nessie at Lipstick, Perfume, and Too Many Pills.  You all need to go check out both blogs- KirBir is a twenty something with Still’s Disease/JRA and Nessie is a twenty something reporter with psoriatic arthritis.  Both are fantastic reads!  Thank you so much- I’m sorry I’m such a slacker!

And now I will be passing the nomination on to….

Joan at Notes From Oklahoma

Tricia at The Sarcastic Soprano

Jo-ann at LivingRheum

Morgan at Small Town Girl In A Big City

Jennifer at Project Jennifer

Wonky Warrior at My body might be wonky but that’s not the most interesting thing about me! (by the way, I LOVE your title!)

Cari at My Bum Thumb

Mallen at Making Lemonade

Beth at Pain, Pain, Go Away

Jules at An Attitude of Gratitude

GO. READ. LOVE. :)

A New One For Those Keeping Tally

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Excuse the language.  Or if it bothers you, just skip this entry. I’m still a little upset.

“No, I don’t run anymore because I have Rheumatoid Arthritis.”

Momentary awkward pause while his hot little brain mulled this tidbit over.

“But…but…but you’re so pretty…”

Blink.

Swallow.

Vein twitch.

ARE YOU A F*CKING IDIOT?

At what point do you think that something like that would affect me having or not having RA or anything else for that matter?

Do you think immune systems ‘immuno-select’ who gets these things based on how people look or how much is in a bank account or what their last name is?

DID YOU FALL AND HIT YOUR HEAD ON CONCRETE?

That argument has just as much validity as you being very honest and telling me that “I’m dumb as a brick” and me responding with a whiny “but you look like an Abercrombie model.”

And what do I say to something like that? Um, thanks?  I think?

That’s almost as offensive as telling someone who’s lost 2 pounds that they look “SO MUCH BETTER.”

Really?

I mean  SERIOUSLY?

Seriously?

Can you at least follow it up with a well placed question like maybe ask me what RA is?  Anything? I realize that would ask an awful lot of the gerbil running the wheel in your head but just leaving it at that and then uncomfortably staring at me makes you look like Lord of the Douche, getting ready to do a little jig for me, and makes me feel awful about myself.

Yes, I know Mom.  I know I am being rude here.  You’re right- I was raised better than that.  No, please don’t give me the guilt trippy “I’ve raised horrible children” speech.  You’ve made that point numerous times in my life and I forgive you for making me so mean sometimes.  (I kid.) Yes, I will make sure to let everyone know that you sent me to Cotillion.  Twice.  Yes, I know it was expensive and I’m not entirely sure it was money well spent. Yes, I think you’re right that  maybe his parents didn’t send him because maybe (gasp) they didn’t think it was important.

I’d like to point out that it is YOUR daughter here, valedictorian of Cotillion, who is posting f-bombs online.

But seriously, “you’re so pretty?”

You’ve got to be kidding me.

Trees and Fingers

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I’m changing some things on my page (nothing major, just playing with it) and I uploaded a new header picture.  I’m a little sad that I can’t get more of the image in any of the headers so I wanted to explain why I love that picture so much.

I took this picture a year ago yesterday.  My friend and I who were both moving from Greenville, SC spent a day taking pictures around town of all of our favorite places that we would miss.  It was a blast and you can read about it here.

One of my favorite places to go there was Falls Park.  It is truly a feat of city planning- they torn down a bridge that used to cover waterfalls right in the middle of downtown, torn down several abandoned buildings also surrounding, and it completely transformed the downtown landscape.  If you build it, they will come: it changed the downtown from kind of seedy to thriving with outdoor dining, free productions of Shakespeare in the summer, art galleries, and tons of activities year round.  

Anyway, surrounding the park are several older neighborhoods with gigantic, beautiful oak trees.  All of the trees are towering and lovely but this tree is truly my favorite.  It is growing on the side of the bank with all of its gnarled roots completely exposed.  Years ago, it reminded me of a Picasso painting.  Once diagnosed, it reminded me of gnarled “RA fingers.”

I love how Picasso can take a normal image and distort it, warp, and layer it so it no longer looks normal or anything like the first image but still contains definitive elements of the normal image.  It fascinates me.  No, I’ve never liked “pretty art.”  So, I thought I was being all profound by seeing RA fingers in the roots of this tree.  Can you see it too?

I think it’s fascinating.

And then I was reading about the park online and saw a picture of the tree in said article.  The caption mentioned how so many people are so taken with this tree because despite its gnarled fully exposed root structure, the tree still thrives on the surface.

And that really spoke to me. That I thought was pretty dang cool.

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.

I am.

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No really.  

I am.

Are you?

I sure hope so. 

Well, I actually wish you weren’t.  But if you are, I think you should and hope you do.

Because I am.  And I’m doing it for you too.  

Confused yet?

Ladies and gentlemen…for all of us who have whined, b*tched, and moaned over the fact that we don’t have a little yellow bracelet worn by Lance Armstrong (YUM) or snarky bumper stickers and shirts referencing breasts (FUNNY)…

I present to you the brand new “I am…” Silicone Autoimmune Arthritis Awareness Bracelet (CLEVER! CUTE! COMING SOON TO A MAILBOX NEAR YOU.)  

Produced by “Buckle Me Up” International Autoimmune Arthritis Movement (IAAM- I AM- get it? SEE- I TOLD YOU CLEVER!) to help raise awareness for autoimmune arthritis   and to help raise money to for our 501(c)(3) paperwork.  

“I Am…

A Leader for change,

Hopeful,

A Believer in Progress,

And Rebranding Stereotypes.

I am an Advocate for

Autoimmune Arthritis Awareness.

Bracelets are $1.50 each and can be purchased here.  100% of profits benefit IAAM. Great for yourself, your loved ones, groups and teams!!!

I am.  Are you?


Advocates for Arthritis

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Wow. Wow. WOW.

I don’t even know how to catch you all up on everything that’s going on.   I’m exhausted but in a good way. So bear with me if this seems a bit scattered…I have so much to talk about that there is no way I can do it justice.

I really truly feel that the only control I have over my RA is my reaction to it.  I can be negative about it and let it hold me back (and exascerbate my  symptoms) or I can try my hardest to keep my life as close as possible to how it was pre RA.  The second choice is clearly the one that works for me although sometimes I do still have a really hard time with it.  Every once in awhile, I’ll have these identity crises- I know who I was before RA and who I was on track to being without it….so what does this mean to who I am now? 

The easy answer is the same person.  The hard answer is the same person.

I continually search for outlets to mesh the “pre” and the “post” me and I just got back from one of the best RA specific experiences I’ve had to date.

This past Monday and Tuesday, I had the privilege of being a part of the American College of Rheumatology’s Advocates for Arthritis Capitol Hill Fly In.  For those of you who are not familiar with this, it is a non-partisan (ie the only way I was comfortable participating) yearly event where a group of rheumatologists and patient advocates from all over the country jet in to discuss legislative issues that affect rheumatology with their local members of Congress. 

The trip had been on the books for quite some time and it was an absolute circus to be doing this in the midst of “current legislative events.”  Literally, the phones in the offices didn’t stop ringing, people were running in the halls at times, media was everywhere, and it seems like every major health organization was represented up there that day.

Issues that we discussed:  (I’ve linked these to the issue briefs for those interested)

Prior to our meetings to prepare us for our Capitol Hill meetings, they had a patient advocate reception.  I wasn’t sure what to expect and was a little nervous at walking into a room full of other patients I didn’t know.  I’ve never been accused of being shy but still, it’s a little intimidating. Also, when I’m nervous I either a. turn in to Rain Man b. chatter and giggle incessantly or c. curse like a sailor.  Please God, do not let me do any of the above.

I did not.

What a diverse group of wonderful people all the patients advocates were!  It was amazing- all ages and many varying levels of disability were represented.  (Not that levels of disability matter at all but coming into this, I was worried that I’d have fatigue issues/feet issues but decided the proper response was to NOT verbalize this fear when I saw that several of the people who were so excited to walk all around the Capitol had walkers…THAT is impressive.)  I love that so many people affected by this are so involved!

By luck, I wound up sitting at a table with Melinda Winner, another RA patient whose website I love to stalk.  She is hysterical and truly inspiring- while dealing with multiple types of arthritis, she still manages to write and promote her cookbook, Cooking With Arthritis, and travel the world doing all sorts of fun things like appearing on the Food Network! 

The rest of the day was spent brainstorming with our teams (generally a patient and several rheumatologists), discussing the issues, and dinner.  I was 100% exhausted but excited for the day to come when I hit the sack at the ripe old hour of 9PM. I’m so young and fun.

Our meetings on Tuesday with members of Congress were eye-opening. There were so many things I hadn’t realized about how our country works.  First, we were prepared ahead of time that most of the staff in these offices would be young, REALLY young.  Knowing that, I still wondered if the gentleman who greeted us in the first office was old enough to drive. (No, I didn’t ask.)  In spite of being so young, they are remarkably well informed and well spoken.  Everyone listened attentively, asked a few questions, and agreed to review the issues we spoke of. 

We were also prepared ahead of time to realize that we weren’t going to change the world in a day.  Meaning that getting them to review the issues or, on a more basic level, understand what rheumatology is, is still a success.  Given that criteria, I feel like our team did a very good job.

Highlights of the day?  Hmmmmmm…..three highlights. 

  • First, the made to order pasta bar in the dining room.  FANTASTIC although I did have to tell them to take it easy on the garlic. That could potentially be bad for business!  
  • Second, one of our meetings was with the legislative aide for one of our NC Representatives…who just happens to be a childhood friend of mine.  Who I also was on dance team with for years- so someone who knows what I used to be capable of and may understand just a little bit more of what this diagnosis means to me and to other people diagnosed.  I hope I didn’t scare her….
  • And third, meeting yet another Representative who has Rheumatoid Arthritis.  I feel good that RA (and other types of arthritis) are beginning to have a “face” where it matters.

So.  What now?

I realize now more than ever how important it is for us to have an accurate image out there- in the media, in magazines, in society, and in government- regardless of what side of the fence that you sit.  I’m still floored and greatly inspired by the number of patients I met who are doing just this.

I plan on keeping in touch with the people I met up there as well as attending next year (if they’ll have me!)  I plan on continuing to volunteer and finding other ways to get involved.

I’m enjoying feeling like the same old me.  Albeit me who is still exhausted and whose feet still really hurt.

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.