Friday, July 25, 2014

Losing a part of our JA Family



Yesterday on the KGAT website (www.kidsgetarthritistoo.org) there was a great article written by a JA parent, Colleen Ryan, regarding our Juvenile Arthritis Families.  For those of you who know, or know of, Colleen you know how absolutely awesome she is.  For those who do not know Colleen, she is an absolute inspiration in our JA world.  The article she wrote puts into words how so many of us felt when we finally got to connect with another family, or person, or kid that could PERSONALLY relate to what we were going through; it was like this weight was lifted off your shoulders.  To finally get to meet and bond with people who knew just what you were going through…for lack of better words, it was an AWESOME feeling that someone was in the same boat as you.  Those people have become known as our “JA Family”.  I have JA Family all over the US; some are within a 20 minute drive, some 2 hours (which for most is still pretty lucky compared to some).  Then I’ve got some that are 6-7 hours, but still within the same state.  Then we start getting into Texas, Massachusetts, Tennessee, North Carolina, Florida, etc.

But for me my “JA family” doesn’t just consist of the other JA families I’ve bonded with.  My JA family also consists of the doctors that treat Bevin.  There’s our Pediatrician, Dr. Cutts; I know for some, the Pediatrician isn’t part of the main doctor circle for the JA treatment, but Dr. Cutts diagnosed Bev’s JA the very first day I brought her in so he is a very big part of our “inner” circle.  Our ophthalmologist, Dr. Ruben, the dermatologist, Dr. Hansra, and of course the numero uno doctor our Rheumatologist, Dr. Radhakrishna. 

Now, the nice thing with all of the JA families we met, bonded and connected with, where we consider them part of our “JA Family”, most of them also consider us part of their “JA family”.  With our doctors, where I may consider them part of our “JA family”, I’m pretty sure they don’t consider us part of their family or “patient family”.  I can guarantee that they make a much bigger impact on my life than I do on theirs.  I go to a doctor’s appointment with Bev and I can come home and talk about how wonderful, helpful, etc doctor so and so was for the next hour or so.  I’ve even told my husband on NUMEROUS occasions that I LOVE both Dr. Cutts and Dr. Radhakrishna and I would be LOST without them.  They may be doing their normal doctor/patient duties for Bevin, but for me I have felt more than once that they have gone above and beyond to help or make me feel at ease.  Because of that, you are now part of my “JA Family” whether you want to be or not.

I work in health insurance (I’m a health insurance agent) and I’ve worked with SO many clients over the years that have been insistent that they have to stay with a carrier that covers their specific doctor’s network.  I HAVE to keep my doctor, they would tell me.  They would complain about the outrageous cost of premiums, but would refuse to look at significantly lower cost plans because their doctor was not a covered or in-network provider.  Before Bevin was diagnosed with JA I didn’t fully understand.  I mean I understood wanting to have a doctor you were comfortable with, but I just didn’t think it was a big deal.  Now oh boy do I get it.  I would pay twice the money in premiums if I had to so that we can stay with Kaiser.  Not only because I think Bev’s doctors are absolutely amazing , OF COURSE I’M BIAS, but also because Kaiser is the only carrier in Northern California that even has a Pediatric Rheumatologist.  If I don’t have Kaiser, then I have to drive almost 2 hours to the Bay Area to see a Rheumatologist…

Yesterday we saw a member of our “JA family” for the last time; Dr. Radhakrishna.  He is leaving Kaiser and moving down to Southern California.  So any Southern California JA kids you will be getting access to an AWESOME rheumatologist (and no he’s not staying with Kaiser).  When he told us he was going to be leaving the news hit me much harder than I expected it to.  I remember when I was about 20 and my primary care doctor that I really liked told me she was leaving.  I really liked her, but I was just like “oh, that’s too bad”.  When Dr. Radhakrishna told me a couple of months ago he was going to be leaving I thought I was going to cry (which I’m sure was obvious by the look on my face and he probably thought I was crazy).  I guess that’s what happens when you become vested with a doctor for your child.  I also proceeded to interrogate Dr. Cutts to make sure he didn’t plan on leaving us any time soon because I couldn’t lose two of them at once!

We had a phone follow up scheduled with Dr. Radhakrishna next month and they called to reschedule it due to his last day coming up before our phone appointment.  Me being the panicked type that I am wanted her to be checked out in person by him before he left (even thou she’s fine).  But it was one of those “ he knows her history, he knows her” things…so he kindly fit us in to his very busy Roseville schedule on his last day in Roseville.  So Bev got to see him one more time…she drew him a picture and we gave him a thank you card for being so great…she wanted to know if he was leaving because he didn’t like us anymore.

So now, after we started this journey with no rheumatologist we are back to having no rheumatologist, but Kaiser is supposed to be getting a full time rheumatologist in Roseville (instead of someone commuting from Oakland once a month), so that part is good news.  But I am very bummed to have lost one of the major players in our “JA family” and do feel a little psycho stalker to be this upset over the loss of a doctor.  

Dr. Radhakrishna and Bevin at the May 10th Tri-Valley “Walk to Cure Arthritis”


Wednesday, July 9, 2014

2014 Juvenile Arthritis Conference in Keystone, CO



Another year and another JA Conference!  This is our FOURTH conference year (DC, St. Louis, Anaheim and now Colorado)!  This year the conference was held at the Keystone Resort in Colorado!

It is BEAUTIFUL there and they have SO much to do!  I will definitely have to look into a family vacation there down the road!

For whatever crazy reason we drove there…17 ½ hours…yes you read that correctly.  We left Wednesday morning at 5:30am and made it to Grand Junction, CO at 9pm (their time; they’re an hour ahead of us Californians).

Then we got up bright and early and finished our trek to Keystone!


The view from our condo

We checked-in for the conference and got ready for the opening night dinner which had a theme of “80s Night”!!!
 
 


Then of course the next day we got to start the conference and all the breakout sessions and of course it was the 4th of July!  So that night after listening to all of the awesome speakers we got to relax at the resort and watch the fireworks show (and we had some AWESOME Philly Cheesesteak pizza from a local place called Jersey Boys Pizza and Deli).
 
The girls having their dessert and waiting for the fireworks to start!

The next day there were more sessions and the awards were handed out.  Three of my FAVORITE JA moms (Katy, Colleen and Tina) all got to host/lead sessions/roundtables, so of course I went to cheer them on.


We took a quick break at lunch time and I took the kids snowtubing for a bit…yes there was snow in the summer.
 



And then Saturday night was “Hoedown Night”; so again we got on our theme attire and went down to the stables to get our BBQ and dancing on!!!
Me and Katy

 Bev giving her Bestie Bridget a HUGE hug!
 
Me and the awesome Jen Ziegler! 
And the great group photo they took!

Sunday morning was the JBR/Walk Expo and there were 10 families asked to host tables to show fun and different ways they have been successful at fundraising and yours truly was asked to host a table.  Althou thanks to Tina I have officially been dubbed the “Garbage Lady” after a breakout session from Saturday morning. 
Our awesome recycling table!
 
 
 
Tina-The other “Garbage Lady”
 Everyone’s JA Mom Hero!!!  Colleen Ryan
 And we even got to see Santa due to Kate Kuhns awesome Fundraising idea for JBR!

After the JBR/Walk Expo we got in the car and started the trek back to Cal-I-Forn-I-A…
 




We hit a FREAK hail storm in Utah



 

The after sitting in HORRIBLE traffic due to a gravel truck overturning and having to back track thru Carson City we FINALLY made it back to California!!!!


It was another GREAT year and next year the conference heads to…