Monday, July 25, 2011

It’s just Arthritis…

Sometimes I don’t think people realize how SERIOUS arthritis and juvenile arthritis (JA) really are.  Because everything looks okay, people assume it is.  Plus, people aren’t as knowledgeable about arthritis as they are about other diseases like cancer or diabetes.  Let me educate you…

This is not the same arthritis your grandparents get due to old age.  When most people hear the term Arthritis they think Osteoarthritis which is a joint disorder that involves inflammation of one or more joints and is most commonly caused by trauma to the joint, infection of the joint or age.  I actually have Osteoarthritis; I broke my wrist in the fifth grade and is aches from time to time, especially when the weather changes.  This is not the Arthritis my TWO year old daughter has.

My daughter has Rheumatoid Arthritis which is a chronic, inflammatory disorder that may affect many tissues and organs (YES ORGANS!), but principally attacks joints.  The pathology of the disease process often leads to the destruction of the joints. Rheumatoid arthritis can also produce diffuse inflammation in the lungs.  The cause of rheumatoid arthritis is unknown and is considered an autoimmune disease.  There are so many different forms of arthritis that I can’t even begin to name them all, each one having its own “special” effect on the body.

Do you know that one of the most commonly used drugs to treat JA is Methotrexate (MTX)?  Did you know that MTX is a Chemo drug?  Yes, that’s right, Chemo…of course the dose that is used to treat JA is not as high a dose as used in Chemo, but you still risk all the same side effects:
·         Chills & Fever
·         Hair Loss
·         Infertility
·         Loss of appetite
·         Lowered resistance to infection
·         Sensitivity to sunlight
·         Nausea/vomiting

Before my daughter was even two years old she was prescribed this drug…when we first discussed it with her doctor, he of course told us all the side effects…at 2 infertility isn’t a concern, but what about what she’s 25?  As a parent of a child with a chronic disease you have to weigh fixing the problem now and worrying about what may or may not happen in 20 years.  What if my daughter can’t have a son or daughter of her own one day because of this drug?  But if we take her off the drug, what will the JA do to her body?

Do you know that people who take MTX and other drugs like it are at a higher risk for cancer later in life?  When Bevin was first diagnosed I kept hearing “at least it’s not cancer” and “it could be worse”…you’re right, at least it’s not cancer…but because of the drugs she’s on, one day it might be.  Once again I have to weigh helping her now and risk what could happen.  Parents who have never been in this situation cannot imagine how hard something like whether or not to give your child a drug to help them now really is.

Some of the other commonly used drugs to treat JA are:
·         Enbrel
·         Humira
·         Remicade

These drugs also carry a great risk of possible side effects and the Remicade is given in an infusion form…like a Chemo treatment.  I don’t know as much about these drugs as Bevin’s not currently taking any, but one day she may have to…and I have met other children who are on these very powerful drugs.

With all this “talk” about HealthCare Reform and the requirement for all Americans to have Health Insurance in 2014 (I work for a health insurance broker)…do you know that arthritis is an automatic decline on most individual insurance plans?  And if it’s not considered an automatic decline, it’s a huge rate up.

These are just a few of the individual underwriting guidelines…

Of course if she has group (employer sponsored) health insurance Bevin will be okay, but what if Rich and/or I lose our jobs?  And our COBRA coverage expires?  What if we can’t afford COBRA?  What if she doesn’t “grow out” of the JA and she loses her job as an adult?  These are things I have to worry about. 

Do you know that kids with JA are also at risk for uveitis which is inflammation of the eye and if undetected or untreated a person could lose their eye sight.  Uveitis is estimated to be responsible for apx 10% of blindness in the United States, but it is something that is very common in kids with JA.  One of the treatments for Uveitis is Steroid drops…
Do you know that children with JA have their joints replaced just like adults?  This may not be as common as adult joint replacements (because ideally the child needs to have stopped growing), but if the JA is bad enough and other options are exhausted…this does happen…at the JA Conference we went to we met a young teenage girl who’d had both her hips replaced.  Now if that doesn’t sound serious I don’t know what does.

Did you know because of the immune suppressing drugs JA patients are on, things as simple as vaccines can become an issue…and being around kids who’ve recently had vaccines can also be a problem.  Ultimately when your child is given a vaccine they are given a “Live Vaccine” which is basically the virus…because JA patients are on drugs that suppress their immune systems, if they are given Live Vaccines/Viruses their body may not be able to fight it off…things like the Chicken Pox.

Did you know 1 out of every 5 kids is diagnosed with a form of JA and that currently 300,000 kids in America have it…my daughter is one of those kids and she is only 2 years old…and everything I have just told you are things I have to think about every day…no it’s not cancer, but it doesn’t mean it’s any less serious.

For more information on Autoimmune Arthritis, you can visit:

Wednesday, July 20, 2011

Victor and Crystal Rodriguez

So I know this is off topic for this blog, but I wanted to share this story with everyone.

On June 4th of this year a local couple, Victor and Crystal, were married and headed to the Bahamas for their honeymoon.  On the last day of their honeymoon, they decided to go parasailing…due to faulty equipment, the harness broke and they both fell (some articles say 40-50 feet others say over 250 feet into the water, I don’t know which is accurate).  Crystal died and Victor sustained numerous internal injuries…neither had insurance.  They were married for 12 days.

I don’t personally know Victor and never got the chance to meet Crystal, but my sister-in-law played softball with them.  When this tragedy happened, their friends, family and community pulled together and started raising funds to get Victor home (as of today he is back in California thanks to a large donation from the Greater Sacramento New Car Dealers Association who paid for the Medevac to get him back to Sacramento).

My husband and I got the chance to participate this past weekend in the Crystal Rodriguez Memorial Tournament (Arena Softball) where 100s of people and 30 softball teams came together to participate and help raise money.  I was so amazed at all the people that showed up to support them.  People volunteered their time (working at the arena) and efforts to make this tournament possible.  And I don’t know the exact total raised, but last I heard it was over $20,000…in two days.

There are all kinds of fundraisers planned between local restaurants, a basketball tournament, a garage sale and more to continue to raise funds for Victor’s medical care.

After the support we received when Bevin was diagnosed and we started the walk team, I was amazed and to see this family receiving this overwhelming amount of support amazes me even more.

I am honored to be able to participate in these events and meet the people who know and love Crystal and Victor.  Their story is tragic and amazing all at the same time.

To read more about Crystal and Victor please visit the below links.

The story about the accident:

Update on Victor:

Victor’s homecoming:

Wednesday, July 6, 2011

We’re in DC!

So I haven’t been able to post as much as I’d like to lately.  Things have been super hectic between getting ready for Washington, D.C. and the JA Conference and preparing for Opa’s Celebration of Life which will be held on July 16th.

We arrived in DC on Monday July 4th and have been go go go since we got there and it’s been a BLAST!  We’ve done as much sightseeing as we can (with 2 small children).  My sister, who lives in Connecticut, took the train to DC and was able to spend the 5th and 6th with us which has been so great because I haven’t seen her 8 years.

The conference starts tomorrow so I will definitely have some more posts soon.

Tonight in the lobby I met two families from New Zealand who are here for the conference as well as a mom I know from a Facebook JA group!  I’m so excited to meet everyone else!

Here’s some pictures in the meantime:

The kids and I in the hotel room

The family by the WWII Memorial Fountain

My sister and I at the Lincoln Memorial

My sister and I with a woman who protests in front of the White House 24 hours a day since 1981

As you can see B is not having the time of her life

The family in front of the capitol

B enjoying the sightseeing

My sister, Erika, and I, seeing each other for the first time in 8 years