(Not such a) Peaceful Easy Feeling

6_zps3d841c08So.  Glenn Frey died today. This makes me sad and weary in numerous ways, especially given all the brilliance that has become ethereal in the past few weeks. It makes me sad as a fan, because the Eagles have been a big part of my “Life Mix-Tape Soundtrack” so far.

Years ago, I can remember going to see them on their Hell Freezes Over Tour in 1994, when they first reunited. My then boyfriend (now husband) and I saw them at Irvine Meadows.  We spent our last twenty bucks on a tour T-shirt, rather than the cab fare back to our car parked three miles away.  We walked happily through the strawberry fields in the dark, humming Tequila Sunrise and talking about how it was one of our favorite concerts ever.  Those fields are all paved over now, turned into industrial complexes.  We saw them several more times, shelling out whatever it took to hear those magical harmonies in person. Played them at our wedding reception. Danced to Desperado.  Played them at family parties.  Played them at my daughter’s sixteenth birthday.

So, in the same way it is always sad when a great talent that has meant something to you is gone, I am sad.

But that sadness is shadowed by something more.

I am angry.

I’m angry because of how he died.  I’m angry because Glenn Frey fought a battle with Rheumatoid Arthritis and Ulcerative Colitis, that eventually, coupled with pneumonia – caused his death.

It makes me angry that in a world that mostly dismisses arthritis as a side effect of aging, like grey hair – people are actually dying.  Not from all forms of arthritis.  And not in the numbers that other diseases decimate.  But still.  People die from this.

I’m angry that we haven’t found a cure yet.  I’m angry that each death rips open the closet in my mind and heart where I lock the fear – the fear that something similar could happen to my own kid.  Because even though her disease is not exactly the same – juvenile arthritis is not just RA for kids – they are similar.  And kids have died too.  Again – not in the numbers that other diseases decimate.  But any is too many.

It’s especially scary when you think of this star – who had tremendous fortune and access to ANY care he wanted.  Money did not save him.  It did not save my friend Debi who also passed last year. When her brother found incredible success and fortune came with it – he would have spent ANYTHING to make her well. It did not save her.  She was funny, and talented, and loving and she’s gone….and I’m still angry about it. I’m angry for my friend Cindy who lost her brother six weeks ago to this stinking, stupid disease.  I’m sad, and I try to turn it to gratitude and hope…. but for all the loss!  The loss!  I am angry.

Grief

It’s a stage.  A natural response that is part of grief.  I’m not even sure I am allowed grief for a man I didn’t know.  I did meet him briefly once – when he came out to support the Arthritis Walk in 2013 in Los Angeles.  I was just another lined up to thank him for lending his voice in so many ways.

So maybe I am allowed grief. Maybe a little.  But that’s not what the grief is about really, is it?  If you are a JA parent, or a person living with an auto-immune or auto-inflammatory disease – and perhaps you despise the Eagles – you are probably grieving a little too.  Because it’s like living it all over again a bit – the onset, the diagnosis, the roller coaster. Fourteen years after the diagnosis, a death like this puts the bile right back in my throat – the smell of the hospital back in my nose – and I relive the panic and horror and worry that comes when your healthy child suddenly isn’t.   Or maybe you are in the middle of real struggles with this disease now – today – and this is just like a bright light illuminating all of the struggle and fear. If so, I am so sorry…and also angry that you have to endure this!

And I know that eventually I will move on.  Tomorrow, I will be grateful again, for the ways that things are better than ten years ago, twenty years ago.  I’ll be grateful for treatments and hope and  I will use it, this anger – throw it like a log into the fires of my action, like fuel.  It will make me want to do more, talk more, tell more people – raise more money – keep working until we find a cure.

But for now, I am just feeling these not so peaceful, not so easy feelings.

Posted in Anxiety, Awareness / Advocacy, Dealing with the public | Tagged , | 2 Comments

Transition starts now….

 

first-career-transition

I am a procrastinator by nature.  Despite years of effort to change that, and despite those many, many times I barely skated in just before a deadline (or even just after) – I still often wait until the 11th hour.  My ability to underestimate the amount of time it will take to accomplish something is crazy, as is my ability to do some of my best work under the pressure of a soon to sound finish alarm.

I guess it should not be a surprise to me then, that I find myself finally truly focusing on “Transition” for my daughter now… now that she is 17 and due to leave for college in less than a year.  Except, I think this process is probably something you cannot really cram for….and I find myself trying to execute in a short period of time what I should have been working on for years. Some of my failures in this arena are becoming glaringly clear as I try to get my little bird ready, and strong enough to fly.

In all those early years, when we would be at the JA Conference, or at camp, or an education day – and I heard “Transition” – I imagined a very specific and finite period of time that would begin neatly at the age of 18 or so…and be wrapped up tidily by 20.  It seemed so remote and distant, I just put it out of my mind and worries. I was wrong.  My friend Liz told me this years ago.  She manages the kids program at the Annual Advocacy Summit – where they are teaching kids how to use their own voices on Capitol Hill – and she told me that I needed to look for every opportunity to empower my daughter to be in charge for herself. Unfortunately, I didn’t embrace the lesson as I should have.

Transition: noun tran·si·tion \tran(t)-ˈsi-shən, tran-ˈzi-, chiefly British tran(t)-ˈsi-zhən\:   a movement, development, or evolution from one form, stage, or style to another

Transition, is a mindset and practice- it is a slow evolution..and it starts NOW.  I mean for you and your kids.  Whether they are 18 months, or 3 years or 13 or 18. Transition is not only some specific period of time, at some adult age, when children magically maneuver from a pediatric rheumatologist to an adult rheumatologist and suddenly know how be a self-advocating, self-caretaking adult. Well,  essentially – when you hear the phrase – that it was it is intended to mean. It is that too…and there are resources that are specifically designed to help you with all of those daunting tasks. But let me share something with you….

Now that my daughter drives – and now that the schedules of my two sons are getting busier, I have been encouraging Caitlin to make her own appointments for the orthodontist (she is almost done with her Invisalign braces) and for the dermatologist. These are never initial visits, but follow-up visits – and it is approved by the practices for her to attend without me. When she attended the first visit without me, I got a panicked text about a copay. “They want me to pay??” she asked incredulously.  Ummmmmm. Hello? Are you not the same child who has been by my side at virtually HUNDREDS of medical appointments over the last 14 years?  And this process has escaped your attention??

Yes, dear.  You must pay the copay.

Alas, it is the eleventh hour.  In six months, my daughter will be 18… and to have ANY access at all to her medical records or to speak with her doctors, I will have to have written permission…and even then, I will not always be granted the privilege.  All I can see at this point, is my failure – and all of the missed opportunities to prepare her for what is to come.

This is not something unique to me, or to my generation of parents – this goal to take care of things for our kids to a fault.  This is so very, very common. This summer, I read a book called How To Raise and Adult which very thoroughly examined the challenges that this generation of children is facing because they have been overparented.  In an effort to protect our kids from the things we fear (which are statistically not any more prevalent but just seem so, because of media saturation) and with the goals of helping our kids succeed in a world that is becoming crazily competitive yet is also burgeoning an “everybody-is-a-winner” philosophy – we, and I include myself, have helicoptered away some of our children’s ability to self sustain.  Kids are less likely to go outside and play, and more likely to attend a parent monitored playdate with organized crafts, snacks and activities.  Kids have less chores, less responsibilities and more Cantonese lessons and business plans for their own non-profits.  Parents are completing class projects, rewriting college application essays and…gulp….attending job interviews with their children (Let me just jump in and say that I believe I am only guilty of about 51% of the examples given in the book! haha).  The book carefully traces the changes in the world over the last 40 years and makes a great case for how, in the recoil back from the latch-key days of my childhood- we have corrected fairly far in the other direction.

Naturally, if it’s quite common to do a little too much for our kids in an effort to give them the best life possible – it would stand that we, as parents of kids with chronic illness, are probably doing even more.  Because it takes our effort so often to just make things fair – to just give them even ground with their peers.  It takes working with the doctor team, sometimes arguing with them – working with the schools, counselors, nurses, teachers – working with their friends – arguing with insurance – , taking sports coaches aside, educating a seemingly endless throng of people who don’t seem to have the slightest understanding of what your child deals with.

Believe me – I am not saying that we should stop that.  And I’m not in any way saying that the tough decisions regarding treatment plans or course should be abdicated to children. All I am saying is that there is room in the discussion for your child’s voice – no matter how young. Because for our kids, becoming an adult will be more complicated and life management will require a greater skill set.  It’s one thing to start understanding how to manage finances, live on your own, cook a meal, change the oil on your car – all those things that young adults have to learn as they start to stand on their own two feet.  It’s another when you add in the needs of caring for your chronically ill self – medications, insurance, doctors, proper nutrition, rest and exercise/ physical therapy, emotional health….all at the same time that you are learning to juggle the responsibilities of just plain old adulthood.  With stress being a trigger for flares, it’s no wonder that so many JA kids suffer huge health setbacks when they start college. The way I see it – every skill I can help Caitlin master now gives her a slightly better chance of maintaining in her future.

So, my advice to you dear friends – is to start now.  No matter how old your child is, there are age appropriate ways to teach them to advocate for their own care, to be aware of their own details.  Encourage them to speak for themselves at the rheum appt – I know that too often, I did the talking.  Not only because I have a big mouth, but because I had the memory of all the details.  But even with young ones, you can spend some time preparing for the visit – and maybe even bring a drawing where your child has colored over the parts that hurt.  Older kids can track symptoms on an app. If you have teens, connect them with information on how they can take charge for themselves. And here are some articles on how we can help our kids prepare for being capable adults and even a website dedicated to helping with the process.

Encourage them to advocate for themselves – to teachers, to coaches, to friends and family. Imagine what you want life to be like for your young adult of the future. Of course you want it cured by then!! Me too!  But just in case it isn’t – or even if it is! –

How much do you hope that your future young adult will be independent, capable
and strong?  And what can you do to get them there?

Posted in Awareness / Advocacy, College, Dealing with the public, Education, Overcoming obstacles, Transition, Uncategorized | 2 Comments

Storm Clouds and Silver Linings

I think of myself as an optimistic person. In general, I feel that attitude is one of our best personal tools and that to a great degree, we cannot control what happens to us, only how we respond to it.  I feel like my “bright side” tendencies are sometimes annoyingly strong, and my muscles that force me to look towards Hope are quite durable.

This summer challenged all of that.

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Look at this beautiful picture.

It was taken at the National JA Conference in Orlando, on Friday night.  This was the family fun night – and for the first time ever, there was a lounge just for parents (with snacks, karaoke and a bar!)

Missing from this photo are two people: My friend Kate, who was actually busy that night volunteering with the Todd Peck Motor Team – a wonderful part of conference.  The other person missing was my husband Dave – but only because my son Jack was participating in Junior Olympics for Water Polo in CA- and Dave stayed home to do that.

Otherwise, what you see are families that are close – that have set-up cookies and milk for Santa pre-dawn at Jingle Bell Runs, that have Walked to Cure Arthritis together, JA Family Camped together, texted together during hospital stays and infusions. In the back is Mark on the left and Adam on the right.  In the front, Kat on the left, Gwen in the middle, and me on the right. Gwen and Adam and their daughter Saige shared a huge condo with my family at JA conference last year in Colorado.  We shared a condo this year too.  On Thursday night after the opening dinner – we went really late to Walmart to buy groceries (what an experience the Orlando Walmart is!!!!).  We shopped so that all of our families could share breakfast each day, snacks, lunches – and we even got the makings for a taco night for Friday dinner.  So, an hour before this photo – that’s where we were – eating tacos with all of our kids, drinking margaritas, laughing, and talking about how great it is to be around so many people who understand you.  And then we were here. And it was marvelous….and so very happy and wonderful.

You hear all the time that life can change in an instant – and you’re supposed to use that knowledge to never take life for granted.  To appreciate everything all the time (which is not possible….). In a way, anybody who would even read this has already had at least one of those life altering moments… because certainly, the diagnosis of a chronic illness for your child makes you appreciate was life was “before” in a way that you would never have been able to metabolize or truly understand “before”. And if you’re lucky, like me, you haven’t had too many of these lessons in real life – you haven’t had too many traumas or disasters or things that make you pine desperately for what life was  a day ago….or a week ago… or a month ago. Long for it in a way that can stop any forward momentum you had in you.

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On Saturday night- we gals headed down to Downtown Disney to enjoy dinner at the Rainforest Cafe. All girls on the town…. while Adam, who is somewhat renowned for creating a Tribe with JA Dads and leading sessions on how to cope (as a Dad) with this whole JA conundrum – Adam was having a Dad’s Open House – complete with Walmart pizzas, chips, veggies, dip, brewskies and other snacks.

We were laughing….drinking fruity, frothy things.  The lights went down and all of the Rainforest animals started entertaining us.  Food came.  We shared fries and laughed and enjoyed.  And then Saige’s phone rang.  She handed it to her mom.  And you know…sometimes you can just know by looking at somebody’s face. It was bad.  I thought Gwen was going to climb over the top of the table.  I flagged the server,  Bring boxes…and the check….immediately please.  What a dichotomy – us trying to force our way back through the vacationing throngs of happy people while getting horrifying snippets of details over the din of the crowd.  Gwen’s oldest son – a surfing accident at home in CA, he made it  out of the water and then fell – can’t feel his legs – intensive care.  Us finding the car.  Crawling, excruciatingly slow through Orlando traffic back to the hotel while Gwen made call after call to get more information – get people to go to the hospital immediately – because she was helpless, 3000 miles away from her son.

Back at the hotel,  our room was solemn, all the dads having been sent away – the pizzas still in the fridge.  Immediately, Kate, Kat and I were searching the internet for this strange thing they were being told – something called “Surfer Myelopathy”- extremely rare.  Like JA – rare.  Struck by lightning twice, they think.  I think.  We all think it – but don’t say it.

And our optimism, which has served us so well as JA parents, which has allowed us to coax our stiff and frightened kids into believing that this new med may work, that this PT will help them feel better, that if they can only make it through second period at school, they can probably make it through the whole day- that optimism kicks in.  While Adam searches for flights to get Gwen home, and struggles over the decision of whether to go with her or whether Saige and he should stay so she can still have her 3 days at Universal that she has been planning all year with her JA sister/friend Delaney- we throw optimism over Gwen like a security blanket.  It’s early.  They will do tests.  They may be wrong.  He’s young (26) and strong – he will walk again.  Hold on. You’ll be with him soon.

The next day – Gwen flew home.  After the closing of conference, we stepped out to hug her goodbye – our group huddled like a three dimensional prayer. That photo above – plus Kate.  And our kids.

The rest of us stayed in Orlando for a few days.  My daughter had a great time at the Disney Park with our good friends the Lentini’s – who made her feel like family, and yet, managed to treat her like a princess.  Saige and Delaney had three adventurous days at Universal Orlando.  Mark, Kat, and their son Lucas and I all traveled over to Universal City Walk to enjoy a day with Adam and Kate (and a few moments with the girls when they could tear away from Harry Potter.)

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Tuesday, July 28 was an incredible day – blue skies and white clouds changed to this intense storm.  Just as we stepped in to a restaurant called Cow Fish 20150728_140531 – the wind picked up, and the rain pelted down. We sat on the second floor patio – the only people on the deck for a long time – watching the storm, having great food, laughing at our luck for getting under cover just in time.20150728_143301  And even though Adam was incredibly somber, and could not stop worrying about Gwen, this too was a great day.20150728_161546After lunch, the rain had cleared, and we wandered through the stores checking out 20150728_163818tchotchkies and Harry Potterabilia.  We went through Margaritaville and checked out Jimmy Buffett’s plane.

Then we took the water taxi back to Adam and Kate’s hotel, where we hung out while Mark took Lucas to check out the pool.  Mark actually taught Lucas to swim at Conference this year – so they were so eager to get some po0l time in until more lightning chased them back to us.

The next day, my daughter and I flew home with Mark, Kathy and Lucas – sharing a shuttle to the airport, the same flights, and a goodbye hug on our home turf.

When Adam and Saige flew home on Thursday- they plunged immediately into the new reality that Gwen had been drowning in.  Gwen’s son is given 4-7% chance of walking again.  And now – so much must happen – immediately – to support his new needs.  It was like 24/7 crisis – and there was not a second to spare for Hope or thoughts of what could make the future better,  it was all about survival and trying to stay on top of it all – insurance, disability, doctors, physical therapy squeezing a few hours in at work.  They had to find a place to live that would be accessible for him – with a first floor bedroom and shower – someplace that would allow pets.  Someplace available immediately.  They had to learn about meds, and catheters, special beds and shower chairs and wheelchairs- and how to physically care for a grown man that has absolutely no control of any of his body or body function from the waist down.

Even though this was not my journey – it was difficult. I love these people.  They were hurting.  There was very, very little I could do to improve their situation. Kate and I texted each other constantly, texted them constantly – we had Saige over for a few days so she could enjoy some dwindling summer time with my kids.  I would catch myself living my life – and spend a moment caught between gratitude and guilt….and force myself to step one inch closer to gratitude.

Less than two weeks later – we had our Arthritis Foundation Thank You event for our Walk.  Adam was there – looking like a shell…..but he was there. 20150818_193949 Mark and Kathy and Lucas lit up the room – and Mark had tears flowing as he quite poignantly and honestly described how the JA conference has changed everything for them.  How, now he knows so much more – and will be more involved in being his son’s advocate – and in going to appointments and learning about the medications.  After the event, we huddled together and Adam told us that they were close to finding a house.  “Just let us know when you are ready to move,” Mark said, “and we’ll be there.”  Mark would drop anything to help a friend- especially for one of his Tribe. Absolutely – confirmed my husband – We’ll be there.  Moving boxes, lifting, fixing things – these are easy tasks to get behind.  Clearly defined tasks with an expected outcome.

The following Monday, Adam called to let me know that they had found a place.  Thirty-five miles inland – but with enough room and an accessible first floor bed and bath.  As I got off the call, I almost texted Mark to let him know – Save this weekend! We’ll be moving Gwen and Adam!  but I got sidetracked.

A couple of hours later – Adam called to tell me.  Kat had just called him hysterical.  Mark died.  What???? Mark died. They had taken Lucas to his first day of school.  Mark had not been feeling well.  So after the drop off, where they met the teacher and Lucas’ new friends – and had what Lucas called on of the best days of his life! –  they went to the doctor – who said that a stint and angioplasty were needed.  They put Mark in an ambulance to take him to a hospital, Kat driving behind.  He had a massive heart attack on the way.  Mark died. Even directly in the hands of EMT’s with all the necessary equipment there, they could not save him.  That’s what I told Kat.  There  is nothing more you could have done.  God wanted him home.  That’s what she told her 8 year old son….. That God needed an excellent carpenter, so he called Mark home.

It has been less than a month. Adam and Gwen are moved. Saige started her new school. So much of the unknown, which caused so much anxiety in those first weeks- is now clearer, though not any prettier. But so much is still raw….and painful.  This kind of thing can break families apart.  I want to wrap them together in silk and happiness and strength so they can endure – and get through – find the new normal and remember how to smile and laugh again.

It’s been less than a month.  We took Kat to dinner for her birthday, to a sushi place she used to enjoy with Mark.  Gwen fought traffic to drive down and join us.  The servers know Mark and Kat – they brought sake bombs over in his honor. Lucas and my youngest bent their heads over a video game while we listened to stories about a man that we only had seen through one or two lenses… but obviously, there was so much more. We lifted our glasses and tried not to cry.

It’s been less than a month.  Kat had a beautiful funeral service for Mark.  She never shed a tear….because she knows that Lucas watches her all the time for cues.  They do cry, at night, talking to Mark and missing him…. but that day, she nodded as people spoke about Mark from the altar and she comforted people as they shyly approached her after, silent or stuttering without proper words to give. I sat staring at Mark’s things being blessed – his Angels hat, his foam #1 finger, a photo of him running a marathon as a young man….his work boots….and cried….Adam and Saige next to me.1

So much sorrow in such a small group of people. After so many years of optimism keeping me afloat, I feel I don’t have any to give them right now- but I don’t know anything else to offer.  My auto-pilot is to look for the way out of the storm. Honestly, I think that they are all so deflated that they don’t want platitudes. Travelling back and forth through the stages of grief, anger one day, bargaining one day, denial.  Adam trying desperately to live the things he coaches other dads to do, to walk the walk, to put his mask on first.  Gwen, trying to take care of her kid – even though he’s a grown man and she barely tops 100 lbs – she still lifts him and shifts him… and he’s still her kid and she still has a husband and five other kids.  Kat trying to keep things normal for Lucas, and alone in the car on the way to work – overcome by grief ninjas invited in by a song on the radio, she finally cries.

They don’t want my bright side right now…..which is good, because I’m having a hard time finding it at the moment. I just give my ear.  My shoulder.  Try to remember as I go through my days that are so normal…. nothing is normal for any of them.  I try to focus on how blessed I am – try to get in extra hugs – extra talks with people I love – extra reflections on gratitude.

If I had to find something – I guess it’s this.  At least we had each other – and we had each other because of JA. I’ve pondered the blessings on this reality before…. but if there is any silver lining to this summer of storms – it’s that….. I know Gwen, Adam, Saige – Kate and Delany – Kat and Lucas….and I had the privilege of knowing Mark.  Despite these things, despite loss and change and pain – it is a wonderful life…..there still is Hope, and friendship, and camaraderie, there is comfort in this JA Family. – These Silver Linings of this stormy life.

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We are officially PRN (aka kicked out:) )

So, we had a rheumatology visit last week.  I’m embarrassed to say it was our first visit in a YEAR.  Our last visit was in May, 2014.  We had another scheduled last September – and then the doctor needed to reschedule and they left me a message…and I kept forgetting to call and boom!  It was May again.  Obviously, that can only happen when things are going really, really well.

Caitlin has actually been volunteering at the hospital two days a week.  Eventually, she was scheduled down in Peds Rehab, where she saw all of the therapists and nurses that have watched her grow up – and they would gape and marvel at how tall she is, how mature – how fast time has flown and how miraculous her progress has been.  It wasn’t long before she was permanently there each week – filing, helping out and making appointment reminder calls.  After so many hours spent there over the years…what a thrill to be there as part of the team, instead of as a patient.  Then it was realized that she is overdue for a visit and the nurses told her to remind me.

When I called, the receptionist did not know her name and suggested that maybe she had been dropped from the system.  “Just look for the 2 massive three-ring binders”, I said.  “That’s her file.”  Ohhhh….yes! Caitlin!  Yes, of course!  It’s been awhile…..

Seeing her doctor is like visiting family.  I am filled with a feeling of gratitude and appreciation for him….and we have such a long, shared history.  Hugs all around.  Smiles all around.  Sharing stories… the driving, the new boyfriend she has….the colleges she has visited.  And from him – his poor puppies attacked by coyotes…his summer vacation plans…his suggestions for becoming a nurse.  And all the while through the chatting, he is inspecting,  bending her knees, elbows, wrists – feeling each finger, turning her head, raising her arms up – having her make what he calls the ‘Buddha prayer hands’ to test her wrist flexibility. praying_hands-500x375 He glances at me with raised eyebrows and a shrug and a smile at the corner of his mouth.

There is nothing.  No inflammation.  No signs of active disease.  The remission continues.

Amen.

“Well, what do you want to do?” he asks my daughter.

“What do you mean?”

“I mean, you are officially PRN.”  Even without knowing what the definition is – without knowing that it stands for the latinxigRad6iA ‘pro re nata’ – to mean “when necessary” – she gets the gist.

“Are you kicking me out?”  She asks incredulously.

“Not exactly the words I would use….” he pauses…”But I do have 800 patients on the waiting list, and you don’t need me.  You are done.”  I silently add in my head…”for now.”  Because I don’t have the courage to ask him if he thinks it really possible that we are done for good- I don’t want Caitlin to hear the answer…and I’m not sure I could handle it if I acquiesced to that possibility and it turned out he was wrong.  A recent article outlined a limited study that examined flares after condition control and treatment withdrawal.  Surprisingly, the study found that systemic kids are the least likely to flare after condition control, and in the first year after stopping treatment – which is something I have never, ever heard of before.  If anything – it’s my experience that it’s a fairly long, rough road with very few smooth patches for systemic kids.  Which is one of the reasons that I have always found Caitlin’s remission so mysterious and miraculous.  And I am not using those words flippantly.

Then again – I always remind myself that it’s the sickest kids I see most – and the parents who are struggling through the rough days that are posting and asking questions and reaching out for the most part.  Are there a bunch of kids out there on “PRN” status?  Are there a bunch of young adults who are “done” with all this? Maybe there are… a bunch of JA warriors who graduated on and are so busy living normal, pain-free lives that they aren’t around to tell us that it’s possible.  That it can happen.

It has been another 15 months of no medication. And that was a short stint of meds after 2 years of no medication.

We decided that a series of baseline x-rays is in order… to see how the hip implants are doing, and to get a sense of the level of deterioration in her knees, wrists and ankles especially.  He vaguely referenced the need for initial films in case of ‘future replacement surgeries’ – and I know he means that her knees might have too much damage, even without future disease activity.  But I don’t dwell there.  Because we are PRN now.

We decide that we will make an appointment next summer.  So that she can come see him after she knows where she will be going to college, and he can make recommendations for care providers in that area – most likely an adult rheumatologist – because she will be transitioning.

Here we are.  Officially PRN.  I’ve still got my JIA mom membership card.  But I would gladly turn it in for Emeritus status, if such a thing exists. No guarantees.  But lots of Hope!

 

Posted in Overcoming obstacles, Remission | Tagged , , , , , | 8 Comments

How Much for a Cure?

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So – nobody won the Mega Millions jackpot last night, which means that it is likely to reach over $250 million for the next draw.  I don’t know about you, but when I think about that kind of money, what I imagine more than anything – more than buying a house with enough bedrooms for my kids, or buying a car, or sending my folks on a cruise around the world… what I imagine most is this:

I am sitting in a room with the best and brightest researchers in the field of auto-immune disease.  We lock ourselves in for days, weeks, months even – discussing the most promising research projects to tackle – What lessons can we learn, what answers can we find? What are the next puzzles to solve? If each new thing we uncovered was like one of those blocks in Jenga – and we pulled it out of the  mysterious tower of pediatric rheumatic disease like Jenga pieces – how long until we make the tower fall and the disease is no more?  jenga

Maybe we won’t know exactly which way to go… but we will have several promising ways outlined.  And then I just write a check. I would gladly hand it all over if it would be enough.  Can you see the check?  How much do you think it’s for?  I bet you have dreamed of writing that check too.  And then, after the work is completed, after the project discoveries pull all those pieces out of the tower – no kids have to live with this sticking disease anymore – because we will know how it is caused, how to stop it.  There will be a cure.

Do you ever wonder?  How much it would take?  If we had a blank check right now… what number would we have to write in to find a cure?  What else would we need to make that happen?  I mean, we all say we want a cure – we want it yesterday.  But in many ways – I cannot concretely define how much closer we are than we were when Caitlin was diagnosed 14 years ago. I can tell you much of the advancements in that time – I can tell you about cytokines that have been identified, how we transitioned from”rheumatoid” to “idiopathic”, about medications that have been developed and how the treatment protocol pyramid was flipped.  So, I guess I can tell you the distance from where we were, to where we are now.  But I can’t really define the distance between where we are and where we want to go as clearly.

I had a rare opportunity to be at a meeting with seven pediatric rheumatologists a few months ago.  It was shortly after the Powerball Lottery had just paid out a $564 Million jackpot, and my head was swimming with check-writing, research-buying, cure-finding fantasies.  After the meeting, I was riding back to the airport with several doctors, and I leaned in and asked one of them…. If you had unlimited time and money, how much do you think it would take us to get to a cure?

Her answer was not what I expected at all.  She said, with barely a moment of hesitation, “$50 million and ten years.”

Hmmm.

Now… let me caveat – this was one doctor’s opinion.  But she is a pediatric rheumatologist involved in research.

So, I don’t know about you – but my initial reaction was two-fold.  The first: $50 million…. is that all?? The second : ten years is too long.

$50 million dollars?  What if that was close to being accurate?  I mean, I don’t have that much in my back pocket… but somehow it doesn’t seem unattainable.  Last summer the Ice Bucket Challenge raised $115 million for ALS research.  That was astounding.  But I bet – if it had been true that $200 million was what was needed for a cure- we could have gotten there.  I don’t know the way to get a $50 million check….but if I thought that would get us a cure…If I believed that it would mean understanding these diseases – and mean no more lupus, no more more scleroderma, no more dermatomyositis – no more more juvenile arthritis….I would do everything within my power to find the way to $50 million dollars.

As for the ten years, it seems too long.  I  know for sure it seems too long to the mom of the 18 month old who was just diagnosed. She can barely imagine how they will cope through toddler years – thinking of her future tween still dealing with JA is almost too much to contemplate.  Ten years of childhood is too long to have to say “No” to bounce houses, or not be able to sit on the floor, or not be able to jump on a trampoline without paying the price the next day.  It is.  In so many ways, tomorrow is not soon enough for a cure.

But we’ve done 14 years already.  Ten more will make my daughter 27.  And when I think of the things she might be wanting at 27?  Well…I’d welcome a cure for her then – I’d welcome a cure gladly before she has to worry about whether this will affect her own children.  Or possibly her brother’s future children.  Before it affects her career.  Ten years? If it meant never having to flare again?

I just keep thinking about those numbers.  $50 million dollars and ten years.

In my heart, I don’t think she is right.  But, I decided that now, I’m going to keep asking that question.  I’m spending more time really investigating how other diseases are making progress – how patients are collectively driving research and treatments – how shared data is speeding up change and advancement towards remission and cures.  I’m really trying to put a number on the distance between where we are and where we want to be… and trying to understand how we can all play a part in getting us there. It’s not some magic fairy that is going to solve this – no single person will find the solution.  We all will play a part I think.  And so, I keep coming back to that fantasy of the blank check, and my question….

How much for a cure?

What do you think?

Posted in Awareness / Advocacy, Diagnosis, Flares, Remission, Uncategorized | Tagged , , , , , | 2 Comments

Edge of Seventeen….

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My daughter Caitlin, my oldest child, turns seventeen tomorrow.

Writing it, saying it – doesn’t make it any more believable.  Wasn’t I just carrying her in a backpack? Weren’t we just painting the bedroom pink and thrilling over Princess sheets and the new, big girl bed?  The sigh at the argument over whether she could wear the red sparkly slippers to the park seems fresh on my lips. The long battle over when to get her ears pierced….when to be able to wear lipstick – still a catch in my throat.  Now, the America Girl collection is packed on the top shelf of the closet, above the fashions, the stylish boots (that are almost my size) and collection of nail polish and makeup…. and she would like a piercing at the top of her ear now, please.

That doesn’t even begin to touch the arthritis journey… and what that has meant to her childhood.

And here we are, on spring break, touring colleges.  COLLEGES.  Because she will be a senior next year.  Hypothetically, in a mere 17 months, she could be moving away to go study. Away.  From me.  Here we are, with a young woman who drives and volunteers at the hospital.  Who is interested in possibly being a nurse – or possibly pursuing business marketing.  Here we are, looking at dorms and being handed flyers from student clubs, and examining the amenities of the rec centers and libraries.

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This is a period of much transition.  I am trying so hard not to be a helicopter parent – and yet, my soul is not supporting free range.  Every time she wants to go to a new friend’s house, go to the beach, drive out of a ten mile radius- I feel like it is a fresh examination of the balance between letting her gain experience and a sense of responsibility, and holding the reigns tight enough that I KNOW she will be safe. But always, there is the voice that reminds me….  It won’t be long until I am not there – until she may not be here.  So, I want her to stretch the wings here – where I can pick her up if I have to, help when I can- discuss the lessons….. instead of her doing things for the first time when she is miles away.

The question of how arthritis might come into play is a big one for us.  Even though Caitlin is still in remission, still off all medication……which is a miracle and mystery to be sure…. there is no guarantee with this disease.  I was at a meeting last month and had a long talk with Mike O., whose son was very much like my daughter.  He was in remission – doing great – until his first semester at college, when he flared so badly that he had to take a semester off.  Three years later he is still struggling to get the disease under control again. It is affecting his grades, his energy, his ability to live away from home, his ability to hold a job.  That story, which I have heard a number of times from other parents and from so many doctors – the story of how juvenile arthritis dormant through teen years comes roaring back just as somebody embarks on adulthood- hangs over me like dark clouds.

So – in  all the moments that we are trying to thread with our gratitude that things are going well, we are also trying to prepare for the possibilities.  Seeking that balance of wanting to enjoy all of these exciting days, and trying to prepare this young woman for what may happen.

Even though I have not been the best at building her skills for this transition (which is another post coming soon), I am very impressed with the questions she is asking and the points she is considering.

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Where is the health center?  What are the hours?  Where is the closest rheumatologist?  How many doctors and nurses are on staff? How big is the campus?  Where are the buildings where my classes would be?  Where would I keep refrigerated meds if I need them?  Where would they be delivered?  Would I need a locking fridge?  Does the campus have a policy on locking syringes?  Does the campus have an office for disabled student services?  What kinds of accommodations can I request?

What strikes me – is that these questions are all intellectual for her – not emotional. In the last four years, she has essentially been off meds.  For a few short months, she was on Humira and MTX…. and I administered the injections.  She is on the edge of seventeen, and she never gave herself her own shot.  Never.  What if she has to for the first time… in a dorm room…freshman year of college??  I don’t know that she really understands what that could mean.  It’s been a long time since she had to understand daily life with flaring JA.  In my heart, I think there are so many things she has forgotten – a blessing and a curse, potentially.

She is on the edge of seventeen.  There is a nice, talented choir boy / computer geek (her words) who would like to take her to junior prom… but he has to come have sloppy joes at our family dinner table before he can ask (our rule).  He will be the first date really – one of so many firsts on the horizon.  She is still a teen – still tempted to roll her eyes at our parental assertions – but now I also hear her voice saying my words to her younger brothers and I have to stifle a laugh.  She is on the edge of adulthood – of planning college, planning adventures, and already feeling some sense of nostalgia over her childhood starting to show in the rearview mirror. Every time we take a family picture, I have to stop myself from getting all blubbery at the notion that soon it will just be me and all boys… because she might not be with us on Easter.  Or Valentine’s Day.  Or some random Sunday morning pancake breakfast.

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She’s a great kid, in my unbiased opinion… and I tell myself all the time that the titanium in her hips is a metaphor for her strength and unbreakable spirit.  That no matter what challenges come, she will be able to persevere and overcome. I tell myself that it was enough test already, enough struggle and being forced to use her very last spoon just to get through the day… there doesn’t have to be more of it.  Right?

The Edge of Seventeen, with the world waiting.  And I am standing behind her…. holding my breathe.  Happy for every great day, every accomplishment. But also Praying and Dreaming.  Still Dreaming of a Cure.

 

 

 

Posted in Awareness / Advocacy, College, Family, Overcoming obstacles, Remission | Tagged , , | 5 Comments

Big Sur, big moments….CCC days 3 and 4

“Courage and perseverance have a magical talisman, before which difficulties disappear and obstacles vanish into thin air.”  John Quincy Adams

So, the riders actually made it to Big Sur on Monday…and soaked their feet in the river, sitting in Adirondack chairs in the water while sipping beer.  But the cell reception is absent, so I couldn’t get the details until our evening phone call last night.

10678544_10203716160357308_6081594654706937337_n10710787_841469609197929_4189949543869280773_nDave and Dan were sporting some jerseys we picked up at a brewery this summer on our vacation in Moab.

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It was a 40 mile ride between Monterey and Big Sur – which offered plenty of time to stop and enjoy the sites.  Despite learning the lesson year one that he was going to be able to complete the ride, and that he should now stop and enjoy the journey – this is still not one of Dave’s strong points.  While other riders like to stop at the local taco spot for lunch, Dave powers through those quaint towns.  Basically he only stops long enough to get some fuel at a rest stop or take photos.  Sitting down for any length of time, he says, causes “Café Legs” – or cramping, stiff legs that are not eager to pedal again.  But the sites on Monday were too great for even Dave to resist.  Along the coast that day, not only were there sea lions and dolphins, but several pods of whales – who were blowing, breaching, spying and generally entertaining the riders who were stopped to enjoy the majesty. So the day, with its beautiful vistas, seems to have had a more relaxed pace and vibe – which translated into more conversations, more people to meet, more connections.

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The stop at Big Sur River Inn also is acceptable – being near the end of the ride day.  (There’s also a shuttle going to and from the campground for convenience.)  It was here that Dave got to talk to Jerry.  I’ve been following Jerry’s story as he trained and fundraised for this ride in support of his 4 year old grandson Carter – who is so dang cute he looks like he popped off a Gymboree ad.  Jerry has a facebook page and has branded his efforts 525_4 Carter.  He’s been telling the story, getting local businesses involved and really going gangbusters.  Without having met him, I get the sense that all of his efforts are to balance the frustration he feels at seeing his precious grandson in pain…. and not being able to do anything about it.  When Dave talked to him, he could see that look… that shell shocked, just- been- through- hell -and- can’t -barely -turn- around- in- case- hell- is -chasing -you look. It’s that look that I remember on my own face for a long time… years probably, after Caitlin’s diagnosis.  That disbelief, that awe… that small flickering flame of hope trying to grow.  It’s the look I see on other parent’s faces when they are new to the family, and they are telling me their story with a sense of desperation – and there is a moment when our eyes meet and I can tell we will both cry.

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I don’t suppose Dave cried – but the moments he had that day brought him to the brink.

It’s always a fine line when we meet people who are newly diagnosed.  We want to share our story – and we don’t want to lie.  But we certainly don’t want every person who is already freaked out by every black box label and crazy statistic they have read on the internet to think that their kid will try and fail so many medications.  Or have their femoral heads sawed off and replaced with titanium.  But we also don’t want them to not “get it”.  They need to know what the monster is and that they will have to fight.  But that there are a lot of happy endings.  And middles.  And everything around in between.

Jerry clearly gets it.10665806_10152554265733673_4064968462862362567_n  And I believe that as he is pedaling this ride, every mile he is thinking of his beautiful grandson Carter…. knowing he would never stop pedaling and telling his story  if it meant the end of arthritis for that little boy.

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(this is Jerry with Amy D and Monica- two of the staff who make this whole ride possible!)

Dave is fond of saying that there is at least one moment at every event we attend or work that just shoots an arrow of this mission directly to your heart.  There is always a story, or a person, or a family… there is something that makes whatever you are doing – whether you are pushing a porta-potty across a hot parking lot, or handing out water, or setting up at 4am, or pedaling up a steep hill at the end of a really long day- there’s is always something that reminds you WHY.  Why you are volunteering.  Why you are spending your time.  Why you want to make a difference.

At the Orange County Arthritis Walk – Dave spent the morning in the CCC booth telling people about the ride.  There were two riders that signed up as a result of that 3 hours.  Two people out of 3000 that were there that day.  But – it was John, a JA dad and veteran. He found Dave at Big Sur and thanked him for motivating him to sign up.  John is active 46417bf3-1f36-467f-b951-f05ef4dbf40dduty military police in the Navy and is riding in honor of his daughter Hayden, who was diagnosed at age two.  Dave then thanked him for his service and I believe there may have been handshakes. (In my mind it was hugs, but I wasn’t really there..)

The honoree for the Big Sur day was Natascha- who is a 28 year-old dynamo who was diagnosed with arthritis at age 12.  It was a very difficult journey getting control and along the way, she was in a wheelchair, on crutches, splints and plenty of pain.  Natascha enjoyed her AF camp experiences so much, that she became a counselor as an adult – and now she is a mentor and trailblazer for kids with arthritis.  One of the best things about her is her perseverance and fortitude.  This chick does not give up.  She sticks to it so much that she is riding the ride this year.  Not part of a day.  Not just one or two days.  The whole ride.  It’s not really possible to spend time with Natascha and miss getting a mission arrow through the heart.

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So, it was one of those days.  Big Sur was beautiful.  The scenery was beautiful.  But the most beautiful thing was the people.

And while I am thinking about all the remarkable people on the ride – I want to extend some thanks to the remarkable people who supported Dave in making this week sojourn possible.  Dave’s parents drove all the way down from Oregon and his sister drove in with my nephew to cheer the riders on the start line- I know it meant a lot to him. Dan’s family was there too – both in SF and in Santa Cruz.  My family has been doing some serious overtime, with babysitting and pick-ups and drop-offs (not because I am at the wine bar!  It’s just too many things happening at the same time:) – I swear I gave them a two-page schedule with attached maps for everything I asked them to help me with while Dave is gone.  Dave’s work has been fantastic – not only his office mates, but the vendors, the guys all through the field- they have donated and supported him black eyes and all.  And naturally – all of the people who donated to Dave and Dan made this possible.

Thank you – and my most heartfelt gratitude to you.  May blessings rain down upon you all!

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