Friday, February 28, 2014

Three month Check-Up

Yesterday we had our 3 month follow-up/check-up since we’ve been back on the MTX.  Overall I’d say Bev’s been doing well, no side effects from the meds, althou she has NOT handled having to start the injections again well.  When we got her labs last week, all her numbers were normal, which was great to see!

Everything looked good, except her knees still have some fluid in them.  When we started back on the MTX we went straight to .4, but she could be up to .7 based on her weight.  So we’re going to go up to .5 for about 6-12 weeks and see if that helps (and how she handles it) and then if it doesn’t help and she handles it well, we will go to .6 and see if we can get this fluid to go away.

Dr. R mentioned knee injections, but he would like to avoid those if possible.  Plus Bev has always done well on the MTX so far so we are going to go as far as we can on that until it proves it isn’t helping her anymore.

The one thing that has always been difficult with Bev is that whether her knees are swollen or not or they have fluid or not…that girl never complains.  Dr. R was moving her knees every which way possible and Bev was staring off into lala land just smiling away.  Dr. R was asking her if that hurt her and her response “nope”.  Even he was surprised that she wasn’t phased by any of it.  I definitely think that is the difference when you have JA since you were a baby/toddler and you are diagnosed with it as a kid/older child.  When you’ve had it since you were a baby/toddler I don’t think you know anything different; it’s like low level pain is just the every day norm so it’s just not even painful anymore.  So when she does complain, I know it must be bad.

BTW, Miss Bev had a 5th birthday on Monday of this week, so our little JA hero is now the BIG 5 years old!!!

Esella and Bevin, our little JA heroes, celebrating Bev’s 5th birthday

Wednesday, January 29, 2014

Active Arthritis

So we went in for Bev’s check up with Dr. Radhakrishna at the end of November, her first in person check-up in six months…and wouldn’t ya know it, he found swelling in her knees.  And oddly enough the left knee was more swollen then the right knee (her right knee has always been her prominent joint).  So, 2 days short of being 6 months in remission she officially came out of remission and got a brand new RX for Naproxen, MTX and a WHOLE box of syringes.

December 5th Bev got her first injection in 6 months…needless to say it did not go too well.  Getting to go 6 months with no weekly shots and then having to start back up is NOT good news to a 4 years old.  I think she’s having a tougher time with her injections this time around then before.

We are now almost 2 months back on MTX and Naproxen…she has been complaining here and there that her legs hurt, which is not something she has done in the past.

She also officially has psoriasis and now has a RANGE of creams for that due to an excessive rash (in the worst of places) that will not go away and tons of spots that she keeps getting on her arms.

Not even 5 years old yet and she can fill her own medicine cabinet…

Tuesday, June 11, 2013

We're in Remission!!!

I keep meaning to get on here an update everyone with how Bev has been doing, but frankly, life happens and I slack off.  The last year has been pretty busy with us and I just haven’t had a lot of time.

But the good news that I have to share is that BEVIN IS IN REMISSION!!!!

As of Thursday May 23rd she had her last MTX shot for hopefully a really long time! J  She is currently medication free and has no active arthritis!  We took her off the Naproxen back in August and in December because she had no active arthritis while on the medication we decided to start weaning the medication.

Bev after her getting her labs done, prior to her appointment
Bev’s SED rate is the LOWEST it’s been since she was diagnosed!!!!
Getting checked out by Dr. Radhakrishna at her appointment on May 23rd
“I’m in remission!”
Bev getting her last shot

So for now we are medication free with no active arthritis!  We still have to get her eyes checked regularly and see Dr. Radhakrishna every 3-6 months to make sure that she remains that way, but she is a happy girl and we are excited!! 

Monday, May 14, 2012

2012 Sacramento Arthritis Walk

Since the walk was held last Saturday (May 5th), I thought it was time I updated everyone with pictures, the video of us on stage and our fundraising total.

This year we raised $4851!!!!  That’s over $1500 more than we raised last year!  A huge thank you and heartfelt appreciation goes out to all of those who helped up reach that amount.

As most of you know we collect recyclables and cash them in towards our fundraising for the walk team.  This year’s recycling total was $668.64 which was almost $300 more than last year!

Here is Bevin’s stage debut (please excuse my sun glasses, I HATE public speaking and by keeping them on I didn’t have to make eye contact J)

And here’s pictures of our big day!

The 2012 team Run Bubbas Run-This year 30 people came out to support Bevin!

Bevin and family

Bevin and Slamson (from the Sacramento Kings)

Beautiful Milly

Hayden supporting his little sister

Bevin and John (she wouldn’t share her nachos)

Bev, mommy (me), Krista, Brittany and Milly

Leo and Krista

Hayden getting a boost from Trent

Bev and her friend Jilly-Jilly goes to daycare with Bevin and Jilly’s family not only joined our walk team to walk with us and support Bevin, but they raised $455!

Me and Brittany (and baby Luke)
A HUGE thank you to all those who came out to support Bevin on the 5th and those who donated and helped us raise money!

Friday, May 11, 2012

For all those moms of disabled children

A fellow JA mom shared this with me today and I felt like it was worth sharing.

God Chooses A Mom for A Disabled Child
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. "A mirror will suffice."

I of course think Bevin is absolutely perfect and wouldn’t have her any other way.

Thursday, May 3, 2012

The 1st Annual California Arthritis Advocacy Day

Wednesday May 2nd was the 1st Annual California Arthritis Advocacy Day put on by the California Arthritis Foundation Council (CAFC) and Rich and I were able to participate.

We went to the state capitol and had meetings scheduled every 30 minutes (from 1-4:30pm) with Assembly Members, Senators and/or their staff to discuss upcoming bills that would be voted on and why they should vote yes.  In the meetings we introduced ourselves and then told our personal arthritis story so they could put a face with people who would be affected by the passing of these bills.

The bills aren’t specific to arthritis patients, but if passed, they could/would have a huge impact to people with arthritis. 

There were apx 45 of us there, some with JA, some with RA; with adult and kids stories so they had every end of the spectrum.  The meetings had 4-7 CAFC members and each meeting you went with a different group, so not only did you get the chance to advocate at the capitol, but we also got to meet new people and hear what they’ve been thru.

The meetings went well, Assembly Members, Senators and/or staff who weren’t familiar with the bills took down the info, ones who had voted no, we asked for their support when the bills came back thru and ones who voted yes or had written the bills, we thanked them for their support and asked for their continued support.

Bevin’s story seemed to make a decent impact on a few of the people we met.  Most weren’t aware that kids could get arthritis or that more kids have JA than most other childhood diseases COMBINED (including Juvenile Diabetes, Cystic Fibrosis, etc), yet those disease get way more media, publicity and support.

We moved around one of our meetings so we could meet with staff member Tim Reardon from Assembly Woman Allyson Huber’s office.  Allyson Huber is the Assembly Woman for district 8 (which is our personal district) and she has a district office located in the city of Rancho Cordova.  Due to the fact that’s where we live, Bevin was on the front page of the local paper and the city has been extremely helpful and supportive of our recycling drive, I felt meeting with her office would be most beneficial.  And it was!

Tim Reardon was the most receptive and interested out of all the meetings Rich and I had for the day.  He took notes, asked lots of questions and really appeared to be interested in what we had to say and our personal stories.  For our personal items we had a print out of Bevin’s bio that was used for her honoree items for the walk and added her blog site, team site and facebook page links and I included a flyer for the walk (which has her picture) specifically because the walk is this coming Saturday and held AT the Capitol so since we were at the Capitol I figured that was a good thing to include.  For Allyson Huber’s office I had also brought an extra copy of the Grapevine (the newspaper Bevin was on the front page of) since I figured her office would be specifically familiar with that paper…and they were.  AND Tim Reardon even went online after we left and made a donation to Bevin’s walk team!  How awesome is that!?!?

Us with Tim Reardon and other CAFC members

Overall it was a really great expierence; it was so neat to be there advocating for Bevin and other people with arthritis and actually talking to people who could make a difference for us.  Currently none of the three bills apply to Bevin specifically, but down the road they would make a huge difference for her and it’s so great to see that there are Assembly Members who are wanting and willing to work towards these changes.

Here’s a brief summary of the bills we discussed:
AB Bill 1800 (Assembly Member Fiona Ma)
This bill is to establish an annual cap on ALL OOP (out-of-pocket) costs for covered benefits.  The OOP will include consumer costs for hospitalization, physicians visits, prescription drugs, copayments, deductibles and any other form of cost-sharing the patient must pay out of their own pocket. Currently lots of OOP maximums don’t include office visit copays, some prescription costs and some even have the deductible on top of the OOP.  This bill will also allow you to file a grievance to dispute a denial of prescription drug coverage thru the Independent Medical Review (IMR) process (currently prescription drug benefits are not included in the IMR process).

AB Bill 1636 (Assembly Member Bill Monning)
This bill requires state departments and boards to collaborate and convene a special committee to review the health and wellness programs offered by health care service plans, health insurers and employers.  There are insurance carriers as well as employers who currently offer health and wellness programs, which is great, but these programs aren’t the best option (or even an option at all) for people with arthritis (or people with chronic illnesses in general).  Currently programs may offer gym access or membership, but most people with chronic illnesses cannot just go to the gym and work out as any normal healthy person can, they have to have specific workouts to fit their needs.  Going and working out the way a normal healthy person does can cause more harm then good for someone with a chronic illness.

AB Bill 369 (Assembly Member Jared Huffman)
This bill would prohibit the practice known as “Step Therapy” protocol in which a health plan requires you to try and fail on more than two medications before allowing you to have the pain medication that your doctor would prefer you have.  For example, if a person was taking a specific drug for 10 years and then they had to change insurance carriers and the new carrier had a “Step Therapy” provision for that drug, even thou you had been taking it for 10 years, the new carrier can/will require you to try different, usually lower cost drugs and show that those failed for you prior to approving the use of a drug you’ve been on for years.  The same applies to a new prescription your doctor prescribes you, if the carrier has a “Step Therapy” provision on that drug, even if your doctor prescribed it to you, the carrier can require you to try and fail on other drugs before they will allow you to take what your doctor prescribed.

For more information on Autoimmune Arthritis, you can visit:

Tuesday, April 17, 2012

A bump in the road

So as most of you can see I haven’t posted in awhile…when I started this blog my goal was to post at least two posts a month…considering my last post was over a month ago, I haven’t done to well at keeping that goal. 

For any of you that have been following the blog I’m sure you remember reading about what happened with my grandparents last year.  They went to the hospital a day apart in February, my Omi ended up needing a triple bypass that didn’t go well (she flat lined twice) and ended up on a ventilator.  Opa was sent home because they couldn’t do anything for him (he had COPD).  On February 28th they pulled the ventilator out of Omi, on March 1st we call hospice in for Opa (it was also Omi’s birthday) and on March 2nd, 8 days short of his 76th birthday, Opa died.  Omi ended up in a rehab hospital for awhile and didn’t come home until early May, but ultimately recovered from the surgery.

Well the reason I’ve been keeping to myself lately is because almost two months ago Omi was diagnosed with colon cancer…and yesterday we found out it has spread to her liver.  With her heart problems and the fact that it’s spread she isn’t a candidate for surgery (to remove the colon cancer) and removing the colon cancer doesn’t help the liver cancer…

She was referred to an oncologist yesterday so we’re waiting for that appointment and to see where we go from here and what her options are…

I just felt like I should explain why I’ve been so out of the loop.  The walk is in less than a month, Bevin is the honoree and I’ve been pretty MIA.  I had a goal to do more fundraising and promoting this year, especially with Bev being the juvenile honoree, but as you can see, my priorities have been elsewhere lately.