Tag Archives: Trying to be normal

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.

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.

Christmas Recap and RA Gifts!

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“Merry Christmas to all and to all a good night!”

Still my favorite quote that directly relates to Christmas.  

On Christmas morning, I woke up to a bunch of text messages from friends and family. I love that about the holidays- I’m not being sarcastic yet, I really do get a kick out of who I hear from on Thanksgiving, Christmas, New Years, and my birthday. Sometimes it’s a very pleasant surprise! As Hugh Grant so eloquently states in Love Actually, phone calls made from the planes on 9/11 were not calls made out of hate but out of love.  (I realize if you haven’t seen that movie, you wouldn’t relate that quote to Christmas.  So go see- it’s one of my favorites!)

 Enter sarcasm. You may have noticed that I do not post about specific guys and myself.  That is purposeful.  But you may remember a gentleman I described a few weeks ago. The one who called me a “spoiled little girl who uses men to feed an ego and fill a void?” The one who has sent me 200 (seriously) text messages over the past few weeks, none of which were returned? Yes, that one. I’d like to thank him for the Merry Christmas text that included an up close picture of “himself.” Yes, you read that correctly. I thought it oh so appropriate how he thought sending that would help me more fully celebrate the birth of Jesus Christ. How…classy.

Hey, if you’re going to send something like that, be prepared to be called on it.  Be grateful that the picture is not posted- I promise you that NOBODY wants to see. For the record, I have never seen you unclothed and you have earned a spot in my history as the most bizarre thing a guy has ever sent me, hence it is mention-worthy. 

Ok, sarcasm complete. Back on track.

I am pleased to announce that I am new owner to two RA friendly gadgets. Ok, gifted with one and went out and found the other.  But still, I love that my family is getting into finding me cool ways to modify things I struggle with.

- Automatic wine bottle opener from Brookstone. It is glorious! You pop the plastic off the top of the wine bottle, set the bottle opener on it, press the button and it’s off! Fantabulous! The downside- I’m feeling the need to “practice” too much.

- Jar opener. My mom is having problems with osteoarthritis in her thumbs so my dad got her this nifty little gadget that helps you open jars. You fit it firmly around the jar top, secure it, and open the jar with the handle.  I went out and gifted myself with this yesterday- this isn’t the exact one I have but very similar.  

After gifts, we enjoyed all the Christmas trappings. My family has a tradition every holiday that we cook London broil. We’ve done this for years- probably stemming from the Easter where my dad managed to drop the whole hot turkey from the oven onto the kitchen floor directly into the cat food when he went to check on it. So London broil, sweet potatoes, cranberries…OH MY! Good times were had by all.

I sincerely hope you and yours had a wonderful holiday (whatever you choose to celebrate) and are gearing up to start off 2010 with a bang.

And hopefully no obscene text messages.

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!

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 4-1-1

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Long time, no write!  

I’ve been busy…working, playing, traveling….living!

Until I can get something meatier up, I will give you a little list of some things going on:

1.  Doctors- I have (finally) found a new primary care doctor here.  I’m picky about all doctors unfortunately but have found a good one who asks the right questions and doesn’t roll his eyes when I keep asking mine.  I am scheduled to see a new rheumatologist tomorrow am….fingers crossed that I like this one as well.

2. Work- I have been swamped.  I don’t post many specifics about work for obvious reasons but I’m in outside sales and my territory was expanded a couple weeks ago.  So I’ve been all over the place trying to strum up business- and actually got a commission check this past month.  (Yay- I haven’t lived on just base salary in years and it SUCKS.)

3. Fun- oh gosh, where to start!  

-I went to the lake for a long weekend for a friends birthday.  It rained the whole time and we ended up playing marathon games of Cranium  in front of the fireplace which sounds super dorky but was hysterical!  

-I went to watch a whitewater kayaking competition here in  Charlotte which was fascinating.  I’d love to try that someday but even without RA, I’m sure I’d end up leading off the 6 pm news (Woman drowns in freak accident etc.) Ha!  

-I went on a ropes course AND a zipline.  Obviously, the ropes course had to be modified some but it wasn’t too bad although my hands hated me for several days after.  The zipline was AWESOME and I’m so mad I don’t have pictures.

-I went back to SC this weekend to see a friend and had a blast.  We were going to a birthday party and, unclear on which house the party was at, had the wonderful experience of walking into the WRONG party in the WRONG house.  We were a street off….oops!

-Next weekend, I’m going to Baltimore for a wedding and am so excited to see my college friends.

So now that you’re all caught up, I’m going to try to not be such a slacker!

An unexpected surprise

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I was stuck on a conference  call the other day at work.  It was supposed to be an in depth discussion of part of what I sell and ended up being the reiteration of a presentation I’ve seen twice.  Yawn.  So, I was doodling on a notepad and on a bored whim, did one of those hand sketches we used to do when we were little.  You know,  the ones you did mainly for Thanksgiving that you would turn into turkey tail feathers and then add big googly eyes. Thrown in some paint in varying shades of reds and oranges and take it home to adorn the frig. 

It seemed like a good way to pass the time. (For the record, my manager was playing on Facebook.)

And when I was done, I was a more than a little intrigued.  

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What intrigued me was that my RA is evident.  But it doesn’t look that bad.  In fact, my worst spot being my left pointer finger, really isn’t that much bigger than the other fingers and could be a whole heck of a lot more misshapen.  And you can’t even pick up on the spots on my thumb and wrist that are troublesome.  

And then I was extremely taken aback by all of this.  Am I marginalizing this whole experience?  Never- it’s had an impact on me so tremendous that I have yet to grasp it.  But I found myself thinking lots of things I hadn’t ever thought about before.  So this RA thing that has invaded my joints and my life….it isn’t all that bad?  This thing that has the ability to make my joints feel like they’re in a vise grip…is barely noticeable at times?   This disease that has in a lot of ways completely changed certain aspects of my life….I’m starting to feel a certain condescension or scoffing towards?  

With a few minor flaws, the big picture is still the same old me.  Same fingernails, same scar on my wrist from that screen door ages ago, same knuckles.  Only big difference is that some of them are swollen. And haven’t I always thought that it’s the flaws that make us interesting? 

I’m used to feeling anger and dislike towards RA.  But feeling condescension and realizing that I am in most ways still the same person, even physically, makes me feel like I have the upper hand.  And I guess I’ve never thought about it from that perspective before.

Who would’ve thought that sketching the outline of my hand would confuse me so much?

On a serious note

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Today is my uncle’s third deathniversary.

 Of all my extended family, my Uncle B and I were the closest.  He was incredibly sensitive, kind, hysterically funny and very intuitive when it came to feelings of others, particularly mine.  My brother spent a year in Iraq and B remains the only person I’ve ever talked to about it in depth.  He knew how scared I was, how badly I was handling it, and some of the thoughts I had about it that really bothered me. He went out of his way to check on me with phone calls, emails or funny forwards everyday of his deployment.  My parents didn’t even do that; it meant the world to me.

 Three years and two weeks ago, unbeknownst to most of my family, he moved in with my grandmother while trying to work out some extreme marital difficulties.  Believe me when I say most of us had no idea.  I still have emails from those weeks where NOTHING is off.  No weird tone, no signs of depression, no mention of any problems he was experiencing with his wife.

 Three years ago this morning, my grandmother went to water aerobics.  We have put together this much:  around 11:10, B called his attorney and got  devastating news.  Around 11:35, another uncle had a missed call. My grandmother returned home later and found B in her garage.  Self inflicted gunshot.

What happened after that I hope that none of you ever experience.  Reactions that ran the emotional gamet.  Mine was extreme rage.  Not at my uncle, mind you, but at his wife.  Anger so pervasive that I would lay in bed at night unable to sleep and so overwhelming that I had a hard time breathing.  My dad wouldn’t allow me to attend the funeral because I couldn’t promise I wouldn’t make a scene if his wife showed up.  And relationships with her torn beyond repair to this day: imagine two separate obituaries and two separate funerals.  In the same town.  Because when you are trying to keep a suicide quiet, that is a sure fire way to fly under the radar, right?

 Imagine what that did to my RA.   I was newly diagnosed and newly on meds.  My symptoms went from a 4/10 to an 9/10 overnight. Anxiety and sleep medications interfered with the efficacy of the RA meds.  And I was in no way, shape or form even pretending to try to take care of myself.

 I guess what I want to say is that I know as a part of our experience, we do experience depression and anxiety while we’re trying to manage our symptoms. I hope we all know that experiencing it and seeking help for it is not a sign of weakness.  Actually, I think it’s an extraordinary show of strength.  I’ve done it and I hope if you are ever in that boat that you do too.  I was pleased to learn that there are counselors specializing in pretty much every area- I’ve been to both grief counseling and one that specializes in chronic illness.   Well worth the investment!

 We’re all strong people here and we’re doing all we can do to live with our respective illnesses.  I think it’s so important that we’ve found each other and continue to talk and support each other.  Knowing that you are not alone is a huge thing.

I wish everyone had that.  I wish my uncle had that.

 I still look for him at holidays and family functions.  From what I hear, that will never go away.  I still cry about it if I think about it too long and I will probably never talk to my “aunt” again, especially since she hasn’t allowed my grandmother to see my uncle’s young son since his death.  I think that’s shittier than shitty.  I  choose to think about him everytime I hear an AC/DC song- I did that because it’s one thing that I don’t associate with the pain of losing him.  And yes, there’s a GREAT story behind that. I miss him and love him like crazy and am incredibly thankful for the limited time that I had with him. 

 And I’m very thankful for all of you.

A picture speaks a thousand words…

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So, out of curiosity, what goes through your mind when you see this picture?

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On the surface, I bet you would say 5 pretty girls who had dinner, drinks and went dancing to celebrate a 30th birthday.  And you would be correct.

But what do you think if I tell you this picture also illustrates the following:

  • 1 case of Rheumatoid Arthritis.
  • 1 case of Celiac Disease.
  • 1 case of ADHD.
  • 1 who has a good friend with bipolar disorder.
  • 2 who are close to people  with PTSD.
  • 3 who have close family members who have severe depression.
  • 2 who have lost close family members struggling with depression to suicide.

Bet you weren’t expecting that.  

Is this some sort of invisible illness support group?  Nope, although we did go to a martini bar named Therapy.  I hope you’re appreciating that little nugget of irony like I did.

This is merely a cross section of life.  And I imagine that this would be fairly representative of all of us.  Just because you can’t see these illnesses on our faces or bodies doesn’t mean that they don’t exist.  In fact, I’d wager that because you can’t see them, it makes  existence harder for those who suffer from them because there is no sympathy or understanding because there is no cast or stitches.  Nothing visual to suggest anything is out of the norm.

On the flip side, because you can’t see these illnesses, you can hide them and only disclose them to people you feel comfortable with.  

And it still lets you take great pictures with your friends in bars named Therapy.

Aren’t they pretty? :)