JA Conference in Keystone!

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So – Here we are again at our family reunion!

It was a bit of a journey to get here… 19 hours driving from California in the family minivan.  Caitlin rode out in another friend’s car – so it was just the boys, Dave and I.  I think we made it through Frozen and the Lego Movie before we even passed Las Vegas!  But there is a lot of beautiful land to see – and the boys were fairly patient.  And once we got here and started to see so many familiar faces, all those moments in the car that were a little nerve wracking melted away.

I started to get really excited and emotional once we hit the Colorado border.  It is one thing to keep up with people you care about virtually all year- commenting on their facebook posts or messaging every once in awhile.  It’s a whole different thing to be able to give them a hug, and see how much their kids have grown.  And I always look forward to meeting new people.

The opening dinner was last night – and 80′s themed party featuring a fantastic kids band KooKooKangaroo.  There was dancing and laughing – and lots of people with side ponytails and mullet wigs.  After dinner, kids got their first opportunity to go to the breakout rooms and meet people – and parents had a networking reception.  It was a great chance to relax and talk – and I got to meet several new families.  You could see that people had hard travel days (the traffic coming from Denver was so epic!!)- but it was a warm, breezy evening, and with 80′s music playing, we were able to hang out, chat and breathe deeply into the weekend.

This year is the 30th anniversary of this conference.  The very first conference was in this same location in 1984.  Later today, we will get to hear from a mom who was there, part of the original planning committee.  It’s hard to imagine what it was like then – before biologics, at a time when kids with arthritis were told to try not to move too much.  Can you imagine?? It makes me so very grateful for how far we have come.

It’s Independence Day today – and later, approximately 1000 people from 42 states- all part of this crazy JA Family will be celebrating together.  There are field day activities planned- and a BBQ dinner available – and fireworks over the lake at 9:15.  I know that I will be thinking about our country, and our history, and all of the men and women who have worked over the centuries to protect our freedoms…. but I will also be thinking of all the kids and young adults here, who strive to live their dreams, and overcome the challenges that JA brings.  I’ll be thinking about my own daughter – who once again is in remission and off all medications- and savoring the moments watching her celebrate with all her friends here.

I’m very grateful to the Arthritis Foundation, to all the sponsors, and to all the volunteers on the planning committee who worked so long and hard to make this all happen.  Having been a part of planning this conference twice, I will never underestimate the efforts that go into  all of this.  And I am also very thankful for all of the families that are here, and all the ones who are here in spirit- because it is the support that we give each other and the strength that we draw from this shared experience that is able to shine light on what might otherwise be a dark journey.  I have said before, there are blessings in this.

Happy 4th of July!!  Best hopes to you all for safe celebrations, good health, and shared blessings!

 

 

 

Posted in Awareness / Advocacy, Education, Family, Juvenile Arthritis Conference | Tagged , , | 1 Comment

I hope you dance….

271708326_i_hope_you_dance_lee_ann_womack_xlargeI wasn’t prepared to cry, really.  I was excited, and maybe a little bit nervous for her.  But I wasn’t prepared for the floodgate to open.

It was so simple and mundane - so normal for most parents.  Just one number with a beginning dance class in a two-hour performance.  Just one girl out of 50, dancing in a leopard tunic to another bombastic hip-hop tune.  Just four minutes.  Just a another high school show, parents and friends carrying the cellophane wrapped flowers and waiting by the stage door for all the “stars” to come out. My own parents must have done this same thing at least 50 times – because I was on stage from the time I was 12 all the way through college.

But this was so much more.

I realized it a little bit this week, as she brought girls home day after day to have snacks and put on costumes and make-up before the tech rehearsal and the dress rehearsals.  They had so much fun that they came over again before the shows Thursday and Friday – a little klatch of dancing cave girls – talking non-stop and building each other up with laughs, energy and camaraderie.  I realized it a little bit then, as I recognized in them that magic thing I have loved so many times in my life –  that thrill of performing, the safety of belonging with the group sharing the experience with you.  The excitement and vibrations of all the people backstage, the love you feel from the audience. And she was experiencing it for the first time.

But when it really hit me was when my eyes finally found her today, after frantically scanning the girls as they danced on and off.  I found her, dancing perfectly with an animated expression, her long blonde hair ratted to look like she was pre-historic, her face smeared with brown “dirt” smudges - and my emotions were stripped bare .  There she was kicking, turning, climbing the scaffolding! My eyes, though blurred with tears, never left her.  It was as if I was watching the final scene in some movie – and I could see all of these other scenes we had lived through to get to this moment flashing through my mind.

I was so emotional and could not stop myself.  My best friend was on one side, my husband on the other – and I was patting them because I know they know.  My mom was two seats down crying too.  She knows.

To me, it’s so much more than a high school dance show.  It’s quitting dance at 3 because she was diagnosed with JA – her little knees, still chubby with baby fat, too swollen and sore to allow those precious pink tights.  It’s quitting again at 7, after we already bought the butterfly costume for the big dance recital because her flare was soooooo very bad she could not do it – not do the little turns and stand on her toes – not lift her arms above her head.  It’s the years of physical therapy to keep her joints from having permanent contractures… The years of sitting out of P.E., dropping out of middle school dance because the pain was too great, almost as great as the pain of kids teasing her because she limped.

It’s not wanting to do drama, or choir – or anything really that would put her in front of people’s watching eyes – because she spends so much time just trying to not draw attention.  It’s hiding her reality from her peers - not mentioning the shots and infusions, the pills, the pain.  It’s sitting out too many times. It’s more than 12 years of systemic juvenile idiopathic arthritis.

It’s overcoming that.  Overcoming two hip replacement surgeries.  It’s auditioning for beginning dance and getting in – when 30% of the girls did not.  It’s insisting on being at school every day – not only because her dance teacher expects it, but because she loves it – she doesn’t want to miss out.  It’s being at a place, blessedly, where her arthritis is managed enough to allow all of this.

It’s fitting in.  It’s putting it out there.  It’s ice packs and rest and medicine at night, but getting up the next day excited to do it again.  It’s her – printing out schedules for local dance schools now – telling me she’d like to take some extra classes.  It’s talk of trying out for Intermediate II Dance next year – when PE won’t even be a requirement anymore.

When I think of all the times I had this dream for her, and stopped myself because the reality seemed to be something else….when I think of all the times I carried her and simply walking seemed to be a lofty goal. Dance was like fantasy fiction….

This was not just a four minute number in a high school dance show.  It’s so much more!

Today, it feels like a happy ending to the movie in my head.  It feels like a miracle.

Posted in Dealing with the public, Overcoming obstacles | Tagged , | 11 Comments

The party’s over….or at least on hiatus

parties overWell, it’s been two years since Caitlin had her last infusion of Actemra.  Two years since she took her last dose of methotrexate.   Two great years of remission – of vacation from almost everything we lived with her systemic juvenile arthritis.  It’s been blissful – a blessing I have tried never to take for granted.  But now, it looks like we’ll be taking a little break from our break.  A lull in the party so to speak.

She started having problems about six weeks ago.  But with school starting, and her being in Dance (the first physical education class she has had in three years) – I figured there were plenty of reasons for fatigue and swelling.  Activity induced, we hoped.  Ice, rest and over the counter anti-inflammatories- we assured ourselves – would keep us in the beautiful land of remission.  A trip to the rheumy then revealed swelling in fingers, wrists, elbows, one knee, both ankles…. The labs were slightly elevated.  Nothing to be alarmed over.  We opted for one quick pulse of prednisone hoping to get back to shore, back to the balmy, calm land of remission.

A week after the pred pulse (which is another story on its own.  Let’s just say that normal 15-year-old girlitude + pred = not very pleasant) – she was already having problems again.  I tried to stay positive – and keep her positive.  I guess that was interpreted as my refusal to believe that her arthritis was coming back, because I overheard her tell my friend,  “I’d be better if somebody would let me get back on the medication I need.”  Yeah!  That’s me!  The one who never seeks treatment for this poor girl!  Right. Second pred pulse 21 days after the first finished and then, back to the rheumy.

It’s been a long time coming – this transition period where I learn to keep my mouth shut, and let this soon-to-be woman have her own discussions about her own health.  I’m not very good at shutting up – and she is not always good at verbalizing.  More often than not – she stares blankly at the doctor’s question, and then stares at me with a “well, what are you waiting for?” look. I am amazed at how much she does not remember.  Sometimes, I think she would forget that she has titanium hips if we didn’t talk about it.   Not this time.

The labs are worse.  Nothing to get crazy about – but still, not going the right direction.  They certainly should have been better five days after finishing 90 mg of pred for five days straight.  The joints also have not improved much.  She explained the morning stiffness (3 hours?  I didn’t know…) and the fact that even on the pred, she was still in pain. “I need to be better.  I need to be able to get up off the floor in dance.  Some of my classes are upstairs.  I’m having problems holding pencils….” – she poured out the details of her days.

He suggested Actemra again.  No infusions, she said.  Unless the clinic is open in the evening or on the weekends, she’s not willing to miss school.  Well, he suggested… it’s been so long since she was on a TNF drug.  She is almost more poly now than systemic – no fevers, rashes or organ involvement.  Maybe she would respond to one of those?  OK, she said.  As long as it is injections at home.  Then, a discussion about Enbrel vs. Humira.  Still, I said nothing, knowing full well she does not remember either of those.  She was only four when she took Enbrel- and it was the only biologic on the market.  She was nine when she last took Humira – and does not remember hiding in the closet, screaming because she hated the way it burned.  She doesn’t remember that her baby brother hid under the kitchen table because it scared him so much to see her scream and cry.  She doesn’t remember.  But I do.  I said nothing.

Four choices, he said.

First choice – do nothing.  Not an option – she interjected.

Second choice – Humira alone.

Third choice – Humira with methotrexate. The mtx will take several months to get up to speed, but maybe we’ll be able to spread the Humira out again and wean down to just the mtx.

Fourth choice- another pulse of pred and hope for the best.  No way, she said.

So, option 3 is it.  That’s what she chose.  Methotrexate – oral for now and Humira, every other week.  The nurse quickly wrote the necessary prescriptions and warned me that this could take several weeks. I already got her a TB test last week, because I had a feeling that this might happen…. but it might take a while for insurance to approve and our pharmacy to ship.

“What am I supposed to do in the meantime?” she asked. Then a discussion about all of the pain meds she has taken followed, from ultram to vicodin – and ultimately, she decided she can wait. “I feel like my head is cloudy enough with all my classes as it is!”  Ha, ha.

As we drove home, I had the strangest emotions.  Given the fact that I was always told this day would come – I guess I am not terribly surprised.  But… I was gifted with a perspective this week that softens this transition so much, it barely touches us.  There was a lovely young girl, 12 years old – who passed away last week from complications from forms of arthritis.  Her disease was referred to as overlap syndrome – and I know she had many rare complications- I believe Scleroderma may have been involved as well.  I attended the rosary service for this young beauty – and felt keenly what the loss of her life means to her family and friends.  I have thought of them all week.

We are all entitled to our own response to our own situation.  Just because somebody else has it worse, does not mean we are not entitled to be bummed out about our own deal.  That being said… I have spent so many moments this week being grateful for the lives of my children – the idea of getting back on the arthritis roller coaster just didn’t hit me as hard as it might have two weeks ago.  Or maybe two weeks from now.  Who knows?

Maybe too… the idea of these injections don’t seem as horrifying with my 15-year-old daughter – who has already weathered so much more – as they seemed with those pudgy little five-year old legs.  I’m guessing she won’t want Princess bandaids this time around!  It used to be one of the few things she could control was the band aid…and which leg.

Instead of feeling the things I thought I would feel (ie: anger, frustration, depression) - I just sort of feel like when it’s the Sunday night of vacation and you all of a sudden remember the things you meant to do.  How you meant to clean out the closet, or read that book, or get the oil changed or whatever… the things that you can’t quite manage to fit in to your everyday life.  Except, it’s too late now. I sort of feel like that.  I’m not sure what it was we didn’t manage to do…. it just feels like something.

Maybe what I should call it is Denial.  Because honestly – I don’t believe this will be a long break from our break.

And actually – the whole appointment where Caitlin spoke up, and made her own decision – and was clear, definitive and decisive – HUGE Victory!

Even more – the process of getting our hands on this medication has been so smooth, I almost feel guilty for my good luck.  Our appointment was Wednesday…. and the nurse warned me.  At least two weeks she said. But then she called Thursday morning – to tell me that the prescription had already been approved by insurance and forwarded to Caremark, my online/mail pharmacy.  Thursday evening, I got a lovely call from Caremark.  In a matter of twenty minutes, I was registered AND she had applied the Humira patient assistance discount to the order (final total $15 for 90 day supply!!!!!!) AND she offered to include alcohol wipes and a sharps container for no charge.  It all arrived this afternoon.  48 hours after the appointment.  Crazy, right?

At this moment – it all feels like it will be OK.  I really don’t have any medical reason to believe that honestly.  Reading the history here, Caitlin has never had a remarkable response to any medication.  Her periods of remission have been more mystery than mappable.  But – we don’t need a miraculous response yet.  Just a little push.  A nudge.

For now, I’m calling this a hiatus. A break from our break.  I’m banking on getting back to those beautiful sandy beaches… and even though we’re all fine with our swim right now,  I reserve my right to scream if I decide that this water is too dang cold and choppy.  I know my JA Family will forgive me…and throw me a life-preserver.

Posted in Flares, Humira, Methotrexate, Pain, Prednisone, Remission | Tagged , | 15 Comments

Days 3 and 4 – Big Sur and San Simeon

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The most beautiful days on the tour also coincide with the weakest cell phone service.  So, we actually never got to talk to Dave much on Monday, as the group rode 40 miles down the gorgeous California Coast to Big Sur – which has to be one of the most beautiful places on earth.

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When I finally got some messages rolling in from Dave – he responded to my previous evening’s chastising… “Hey, honey… I know you are having fun.  But you’ve got to give me something to work with here…” by creating a journal.  And I use the term lightly.  Let’s call it a man-journal. Because a journal, as I have experienced it – comes with lots of words, and an outpouring of one’s innermost thoughts. That is my woman’s definition. My engineer husband has a different concept.

So, here – I present to you -

A Journal of Days 3 and 4.  By Dave Ryan.

Awake 4 back in tent after toothbrush and now enjoying some of last nights coffee.
Listening to the “roosters of the sea” sea lions barking in the bay.  I made that up.
Last night had a cup of chowder at Coopers restaurant and pub on  cannery row while we watched Broncos beat Phillies. Dan, Steve and Matteo. Then headed to sly mcflys for a couple more beverages and football. Then got back for dinner… Beer from local AF.  Had 4 chicken breast and lots o salad.

2013-09-30 04:25
Something just snuck past my tent and tipped over my coffee.. going to get more and find culprit.

2013-09-30 04:27
Going down to plug into the octopus of charger station and get more coffee.

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(So, obviously, this particular photo was not taken at 4:30am… but you get the idea!)

2013-09-30 04:33
Sky is beautiful.
Sky is beautiful.  Obriens belt is clear as a bell.  No fog or overcast at all.  Shorts and flip flops are fine.

2013-09-30 04:55
Thought always…claim open area for tent.  When people set their tents nearby you don’t feel guilty about waking up early.

2013-09-30 05:09
Culprit was a raccoon.  Forgot my headlamp.  Someone’s phone is ringing…right now.  Oops!

2013-09-30 05:11
Couple people up and some tent flashlights.  Still pretty quiet.

2013-09-30 06:44
Steves up his tent down having Bfast.  Dan at Bfast Matteo still quiet?  I’m ready to roll at anytime.  Would like to see Matteo first.

2013-09-30 06:59
Livia is the honoree.  Bfast was sausage, potatoes an hard boiled egg.

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2013-09-30 07:12
Camp PP moves onto Big Sur.

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2013-09-30 07:56
Just stopped for pics

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2013-09-30 08:04
Stop 17 mile drive

2013-09-30 08:39
Lone cypress how many pics can we get.

2013-09-30 08:47
Lone cypress with team pp

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2013-09-30 08:57
Pebble Beach club house

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2013-09-30 09:42
Stopped in Carmel for cash and soap…long story.
Shared mission carmel with bob Johnson.

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2013-09-30 10:27
Everyone split after Carmel.

2013-09-30 10:47
Rocky point w Bob e dissidents James

2013-09-30 11:02
Bixby bridge w Bob

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2013-09-30 11:16
Hurricane pt forgot about that asccent

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2013-09-30 11:49
River inn.  By myself so far?

2013-09-30 12:09
A pounder in honor the Pughs at river inn. (note from wife…. The Pughs are another JA family from Kansas.  Their daughter Hannah is a great friend of Caitlin’s – and the whole family is like family to us.  Can’t wait to see them at conference again in 2014!)

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2013-09-30 12:29
Also in honor of our pirate!

2013-09-30 14:27
Friends helped consolidate my luggage where there was none… In the poison oak.  Thx for the help.

2013-09-30 16:05
Chilling at Big Sur
Out of the shower.  Waiting for the others to return from River Inn.

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2013-09-30 21:12
This evening.
Had a great discussion w Matteo Dan Dave? and Bob about treatments cures and  philosophy regarding JRA.

2013-09-30 21:20
Monday Night.
Dinner was salmon, rice and chicken at big Sur lodge.  Mmm. Watched Monday Night Football

2013-09-30 21:23
Ride with Dr Jack
Rode w Jack before River Inn… He can put down some road.  Avg 18 mph easy!

Day 4… the Saga Continues…

2013-10-01 03:41
Beautiful morning at Big Sur.  No moon and stars are bright and plenty.

2013-10-01 05:24
Big Sur morning.
People beginning to stir another shorts and flip flop morning.

2013-10-01 05:33
Slept great to the white noise of the creek and sound of crickets and frogs.

2013-10-01 07:49
Topped first out of big Sur.

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2013-10-01 09:04
Just out of first rest stop.  16 mi in 68 mi day.  Up next twin B’s.  SeE you at ragged pt

2013-10-01 12:25
Dan Steve matteo stopped at elephant seals

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2013-10-01 13:53
Camp set up ready for showers.  We’re all here and Jack steady and sure wins the day

2013-10-01 16:54
430 wine tasting I’m responsible for smores fire?

End of Journal :)

At the end of day 4, my dearest managed to find a hill with some cell signal and give us a call.  The kids were so glad to talk to him.  Our home is “unstable” when any one of us is gone for any length of time.  It’s hard to describe – and is much more than the fact that I had to take the trashcans to the curb and have been the solo director of all things kid related.  But our whole vibe is askew when one of us is gone – and my youngest especially is prone to sudden shut down.  Today at pre-school, he spilled milk on his pants.  When the teacher suggested he change into dry shorts – it was total disintegration into a puddle of nonverbal goo. It did him good to talk to Dad… and everybody is in much better spirits!

My mission moment today is a little Yin-Yang. I read not one, but TWO notifications today of children that have lost their battle with juvenile arthritis.  One boy, one girl.  Both around the age of 10.  Both with the same type of arthritis Caitlin has (systemic).  Both gone from this world from complications that were a direct result of this disease. I can’t imagine the pain of that loss… and I can’t help but be a little angry that we didn’t do enough, soon enough to save them.

Not only did I spend a great deal of time trying to send healing thoughts to those families – but I was mentally trying to infuse my gratitude into the riders today.  They ride all day – and are not allowed to have earphones (for safety).  So unless they have a bike mounted radio – they ride with only the wind and their thoughts rattling around under the helmet.  It’s hard to comprehend what you would think about all day long.  I was trying to employ some mystical telepathic power- and just for a moment, jump into their heads to tell them not to stop riding, not to stop telling people, not to stop asking for money.  They can’t stop  because we need a cure.

As usual when I have these downward revelations, I try to reverse with something positive for balance.  So, I offer this young JA Warrior.  Jake, from UK, is likely one of the world’s youngest black belts.  He is  only 5 years old and 3 feet tall!  But there is nothing young or small about his courage and will….

Today, may the spirit of young warriors be in our hearts and fuel our actions!

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Riding for a Cure – Days 1 and 2!!

The California Coast Classic has just kicked off again, which means my husband is now riding his bike 525 miles down the coast of California.  He’s in good company with 215 other riders – and they are doing it to raise money – because we want a CURE for arthritis.  So far, they have raised more than $1,000,000 dollars which makes this the largest single event for our cause in the nation!

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The ride kicked off early Saturday morning from San Fransisco – at Fort Scott, high on the hills overlooking the Golden Gate Bridge.  It was gorgeous weather – you couldn’t ask for any better! Not foggy, not too hot – just greatness.

The first day was a breezy 86 miles…. and took the riders all the way to Santa Cruz. The kids and I followed the same route that the riders took.  The riders are given a DRG every morning – that’s insider speak for “Daily Route Guide”.  So we followed the DRG and took the same streets, turns and hills that the riders traveled.  I just have to say, I have a drastically different opinion of the definition of a “short, steep climb” than the authors of this guide! I was in a truck,  chugging up some hills that seemed like Everest, while the kids hung out the window and cheered and waved cowbell for the riders as they down shifted, and up pedaled. At the end of the day, I overheard one of the riders say that he recorded some 4300 feet of climbing on his magical, bike technology do-hicky thingy.  There didn’t seem to be anything short about any of the climbs to me!

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Can you imagine riding 525 miles like this???

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Along the route, there was so much to see – lots of beautiful vistas and gorgeous scenery.  It’s so inspirational and life affirming, that one of the riders took a roadside break at Pigeon Point Lighthouse as an opportunity to propose to his girlfriend!  She said YES!  Congrats Troy and Annie!!!!

There were three rest stops along the route today – and the kids and I stopped at the first two to do our cowbell performance and cheer in these awesome riders.  This year, Dave has four other Princesses on his team, including a very fantabulous friend – Dan W.  As a side note, I find the fact that Dan is riding to be quite in inspirational story – because two years ago, his back was seriously funky and painful.  He’s done a lot of stretching, yoga and strength training to have come this far!!  Dan’s whole family was there at the start line, and his daughter Emily accompanied us all day.885207_10201165256951265_955623060_o

Dan and Dave were feeling pretty strong at the first rest stop….

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And still doing great at the second!

When they pulled in at the end of the day, spirits were high.  I think for Dan especially, as a first year rider, it was a sense of relief.  All of that fear of the unknown nonsense is behind him.. and now that he conquered the first day, I think the rest of the week will be a breeze!  As breezy as a short, steep climb! Seriously though – as the riders trickled in – because after 86 miles they were spread pretty far apart – I could see that sense of relief on so many faces.2013-09-28_15-25-30_178

After some pretty chilly showers in the high school gym, our happy riders set up camp on the football field.  We left them reluctantly with hugs, and a lug full of microbrews.  I would SO MUCH love to follow them for the week, but with three kids, and their crazy schedules – it’s just not really a great idea right now.  But when Dave does his tenth ride… let’s see…six years from now…OK. Goal set!

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Even though we weren’t able to stay, I am so happy that so many great volunteers will be there all week.  Especially my friend Mariah and her cutest ever little dumpling of happiness – OZL.  They will be there in support of all the riders, but especially Team Z!

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Sunday – Day 2 – Took the riders a mere 48 miles from Santa Cruz to Monterey.  It was also team jersey day!  So, of course, huge love for team Princess Parade! Jason, Jack, Dave, Dan, Steve and Matteo

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I think they rocked the jerseys all day long!  Seriously – we get a lot of compliments on these, which we order from Jakroo.  Next year, we’ll open up our store for other riders if they want to buy one and be an honorary team member.  I think there are a lot of people wanting to express their inner Princess!

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I also have to give a special dose of respect to these two riders, who are pedaling in honor of Macy, another one of my JA family – and a seriously fashionable young JA warrior.  These jerseys are Macy approved;)

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Because it was a shorter day – which is obviously a purposeful gift after yesterday’s adventure – the guys were finished, showered and ready to shuttle in to town for some football and beer by the early afternoon.  Everybody is still riding strong, still safe, and still having the time of their lives!IMAG0120

My mission moment today is for these two folks, Dwight and Maria.  They were celebrating their 29th anniversary on the ride this year!

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Dwight, Maria and their team, Also Touch ride in honor of Christiana… their daughter who lost her battle with Dermatomyositis at age 10.  They ride in honor of her, and all children – to find a CURE.  It is not hyperbole to say that they are out riding to save lives.

But the reason they are my mission moment – is because they represent such a wonderful marriage and partnership.  What they have been through is more than enough to crush many people, enough to drain their spirits and sap their hope and optimism.  But these two have raised beautiful daughters and built an army of passionate warriors in this cause – and all the while, they have continued to help each other to grow, thrive and live beautifully.

So for all the partners that are out riding together, and for all the partners at home holding down the fort, making the lunches and covering the week’s duties… may we all be able to keep our face to the sun, hope in our hearts, and the wind at our backs while we tackle the short steep climbs in our own lives.

Best hopes to all the riders as they head to Big Sur today!!

Posted in Awareness / Advocacy, CCC, Family, Uncategorized | 1 Comment

My JA Family

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” Family is like music. Some high notes, some low notes. But always a beautiful song.”

I have a huge family – I mean tremendously gigantic. I’ve never even met most of them and probably never will, because there are over 300,000 units of my family all across the Unites States. Every region, every state… the branches of this family tree are massively widespread, but we all share the same basic trunk.

They are my Juvenile Arthritis Family.

In another life, another circumstance – many of them would probably never know me, and may not even want to. They might find that my thoughts on religion and politics are drastically different, and my views on gun-control or gay marriage might make them want to “unfriend” me. I might be from a different generation – so old to some, just a pup to others. My personality might be a virtual cheese grater on their soul and conversely, I might find their glass being half empty most of the time incredibly frustrating. Or vice-versa, depending on the perspectives. My country music might never make the rotation on their heavy metal playlist, and we may never agree on what pizza to order – if we could even agree to order pizza in the first place! I might be geographically distant, a west coast girl totally unfamiliar with midwest sensibilities, and life in the south. – We might have virtually nothing in common….. except for one very important thing.

Perhaps the most important thing.

We all understand what it is like to have a child living with juvenile arthritis or another form of auto-immune disease. And because there are 300,000 children living with arthritis across the country, there are at least that many family units that understand something fundamental about me and my immediate family. They understand it completely without me having to try to find the right words to explain it. I understand them in ways that maybe their own extended family or colleagues can’t. Quite simply, we get each other.

Though every journey begins differently, we all understand the fear of those dark early days. We share many of the same struggles, fears, challenges…. and we have this thing in common that perhaps none of our other friends can truly understand. It’s hard to really understand until you have walked a mile or two in those shoes… but we have all had the same shoes. We share this life living with JA, and this unquenched desire to find the cause, and find a cure. Because of this unique connection, wired around this one thing that I am most passionate about, I consider all of these people like extended family. It wasn’t a choice, any more than you got to choose the family your were born or perhaps adopted into (with a few exceptions I’m sure).  JA certainly wasn’t a choice – but we are family, nontheless.  This is why I have often referred to the JA Conference as a family reunion.

Like within my own exquisite and unparalleled family, and close groups of friends – We in this huge JA Family come to each other to vent, to get support – to get advice. To share victories, hopes, aspirations. We share tips and tricks, tools and complaints, and we offer each other a virtual shoulder or ear, when sometimes one cannot be found in our own closer circles. I always hope that my JA family will be a safe place to lay bare my true feelings about this journey – that even if our treatment choices are different, our thoughts on diet and nutrition are different, even if you don’t like the charity I choose to support, or we don’t agree on public health care policies…. I hope that our discourse will not become any more heated or hurtful than a debate around my kitchen table. (Believe me – those push the envelope frequently, but everybody hugs it out in the end!) We are all human though – and we do have lives much bigger and broader than JA… so it’s natural that we will rub each other the wrong way from time to time, and maybe not choose the best words. But I hope we always come back, with respect and kindness – just like family.

Because- at the core of it all – we are warriors with the same mission in our hearts and minds. We want a CURE for our kids. We want the best life possible for all of our kids, with the fewest limitations and the most joy possible… until we get a cure.  For me, that pretty much trumps everything else – every other difference of opinion we may have. That is the MOST important thing – almost without fail.

When trouble comes, it’s your family that supports you. And that’s why I am so fortunate to have this tremendous extended family to help me along this way.

Cheers to my JA Family!

Posted in Awareness / Advocacy, Family, Juvenile Arthritis Conference, Overcoming obstacles | Tagged , | 7 Comments

Now, you’ve heard of JAALG….

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“Always remember that the future comes one day at a time.”

In all the volunteer work and advocacy I’ve done around juvenile arthritis, it’s one of my greatest privileges and accomplishments… and yet you’ve probably never heard of it. That wouldn’t be a problem at all if it weren’t for the fact that its very success and veracity depends on you knowing about it.

It’s the Juvenile Arthritis Alliance Leadership Group - also known as JAALG. It is a group of volunteers, one representing each of the ten regions of the Arthritis Foundation across the country. We are parents of children with arthritis, young adults that have grown up with JA, and pediatric rheumatologists and nurse practitioners. We meet via conference call every six weeks and in person once a year, in addition to other updates and communication electronically. Our main purpose is to be the voice of JA families across the country.

If I had to draw a little picture to demonstrate what JAALG should be – it’s like a funnel / megaphone. If there are issues across the country having to do with JA, we should be taking those issues back to the AF. The AF is a consumer driven organization and we are one of the conduits to amplify the voice of the JA constituents. Conversely, if there is information that the Foundation would like to disseminate, we are a tool for that, helping to take knowledge back to our local regions. We talk about everything from the SAK program (which was one of your top priorities in 2012-12), to advocacy efforts, awareness campaigns, local arthritis camp opprtunities, education days, and peer to peer connection opportunities. Essentially, we exist to try to improve the lives of families dealing with juvenile arthritis and to help the Arthritis Foundation understand our needs.

One of the goals we have had since I was nominated to be a part of JAALG – is to become more visible. With 12 years of JA under my family’s belt, I can safely say that I know many of the issues. But I don’t know all of them! Not even close! And if I am going to be a successful advocate for families in my region – they will at least need to know that I exist, and how to reach me. To that end, this link was added to the AF web site. Through this link, you can submit questions or suggestions to your own regional JAALG representative. You can also submit a question for a medical expert.

Change is never easy, and change is seemingly never quick. When my daughter was diagnosed, I was filled with a hotly burning passion and urgency to make things change immediately. I wanted a cure – I wanted everybody in the whole world to take this disease seriously – and I wanted our old life back. I still have that urgency inside- but I’m a little more patient now. A little. And I feel that the fantastic group of volunteers that I work with on JAALG is pushing forward, in the right direction to get to those things that we all want and need.

So, now you’ve heard of JAALG. In my opinion, there are some great things in the works for JA families, and the Arthritis Foundation is listening to your voice more than ever. I am incredibly proud of the staff and volunteers that I get to work with – It’s also very important to me that the work continues…with urgency… until there is a cure. So there it is. I am your mouthpiece in some respects. If you have something you really want me to say, I can’t say it if I never hear it from you first. I won’t always have the answer you are looking for, but I will always have an ear.

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