Saturday, January 24, 2009

I see a mansard roof through the trees...

It's a Vampire Weekend! Mid-way through our January, and we are movin' & groovin'!

I have been BUSY BUSY BUSY working on headbands for TOTTIE'S PRETTIES because I am so psyched to double my amount of donation this year. My point of making Tottie's Pretties headbands is to share the profits with CARRA (Childhood Arthritis Rheumatology Research). In 2008, Tottie's Pretties donated $1500 to CARRA!
AND this year I would like to also share the profits with the Uveitis Foundation where we visited a year ago for Charlotte's arthritis in her eyes (Dr. Stephen Foster). They are doing amazing work in Boston for Children with uveitis & the ability to help them with their research would be fantastic! So please see my ETSY site (on the right) & send me your email so I can keep you looped on monthly promotions (this month, I donate a soft band Tottie's Pretties in your family name to the Childrens Day Treatment Center at Portland's Emanuel Hospital where children receive chemo every day - So far, I am sending in 10 for Valentines Day!!).

Charlotte has remained quiet (not her but the arthritis, tee hee!) and we continue to truck along at Remicade (chemo) treatments every 4 weeks, and eye appts to make sure that the chemo is doing its job, every 4 weeks. Methotrexate (.5mls orally 3x a week & sub-q injections 1x a week) is still part of the equation as well. Other than that...Check out her NEW 'do! She has grown taller recently, and she just SEEMS like she's getting so much older every day - her sense of humor is contagious & she has made me laugh to tears before! 3 1/2 looks good on her!

The last few weeks, I have had some frustrating feelings as a parent of a child w/ multiple doctors. Its been the continued differencing of opinion that can happen. And what seems to be the lack of empathy for the other doctor's opinion, the lack of proactive approach of saying, "Hmmm, interesting, I would love to converse with Doctor B & get back to you on a game plan we all can agree upon."

Instead, its been left in our lap as parents to hold steadfast to our "hunch" or "gut feelings" because in our situation, neither of us have a medical degree & would LOVE to rely on THEIR opinion, but who's when multiples are involved?!?! We read, research, talk to other families in their experiences & end up going with our 'gut' when talking to the multitude of dr's that we work with.

These medications that our children are on, are not cheap! So when you are not geting a cohesive agreement on the path you should take for your child, yet that path puts a dent in your family budget, where's the comfort of SOMEONE saying, "I know, I know, but you are doing the right thing."

Now, let me save you the email saying, "Erika WHAT's GOING ON!?"

And for our family, its nothing more than my last post (which I talked about our differencing recommendations). But I talk w/ other families about JRA, uveitis & our situations & lately, I have heard one too many stories that are similar to ours, differencing of opinions/lack of empathy with those opinions/neglect of Drs to learn more from each other regarding those differences/dismissing attitudes towards patients families.

We have a support group, if you will, of people we talk to on the phone, over email/facebook or get together for coffee. And I am sad, sad, sad, sad, beyond belief & frankly fed up on this issue.

And so the question is.... the multitude of questions are:
1. How can we feel secure as parents going in one direction with one doctor when he's not getting "consensus" from the team?
2. Why are dr's dismissive versus being proactive with us or their peers in coming up with a cohesive solution or at least in getting educated on their reccomendations?
3. When is it time for a 2nd, 3rd or 4th opinion?
4. And if you get that other opinion, and its not in your hometown, how do you not burn bridges with the drs you do/need to work with in your own backyard?
My girlfriend & I, today were talking about having & being a support to each o ther in raising our daughters in today's society & community when there is SUCH A differencing of opinions THERE too, between moms/peers & what they allow, dont allow their children to do (that will be another post). I said to her: "Its a full time job being our daughters (childrens) advocates, its beyond overtime when one of them is sick/has a disease or is impaired in someway."
To be continued...

Thursday, January 1, 2009

RMS 2009

Happy New Year! Love today! Football, pajamas, football playing & then celebrating! This momma is 36 today!

All last week I have been thinking about my words that will lead me into 2009. My friend said that sometimes resolutions can be to daunting & a tad negative (thinking of all the changes can be a downer) but instead think of your own mantra or tag lines or inspirational words that will lead you on your quest for the year.

I started out with one word. I thought this one word would be enough to focus on for the year.

Then I listened to NPR's "Talk of the Nation" on New Year's Eve Day & they were welcoming callers to share about "people that passed in 2008 that didnt get the recognition they deserved." Wow! There were some amazingly loved people out there that passed this last year. And I found a common theme. These people all did MORE than they were asked to do, they made a positive impact on the community & folks around them. And what it said to me is, "ok say this was MY last year. What am I doing? Am I doing enough, can I do more?" That's when I came up with word #2 & it in turn automatically gave me the opposite word that I need to focus on as well. Word #3.

So 3 words in 2009 will be my focus. 3 -a powerful & magical number!
Routine. More. Still.

Being the mom of 3 under the age of 7 & one having a chronic illness (Juvenille Rheumatoid Arthritis & uveitis) its hard to have all plans stick. We truly live day to day with health & schedules. But I also know that if i DONT schedule/dont plan, days fly by, opportunities missed and the goal of "Seize The Day" is gone. Yes, I can schedule & then Charlotte might not feel well in the AM & there goes the morning. So lets work around that. What can I control?

Meals. Budget. Exercise. 1:1 time w/ each child, hubby, friends, ME! Read (yes, i would like to return to that art) & write (remember that JRA children's book that's sitting here?). Even chores can be a part of a routine so nothing feels overwhelming. I will carve my time for working on my routine, working on my goals, working on my art, working on myself & working on the computer. Not one will overshadow the other, not one will take over another. A time & place for all. It's gotta be a routine. And say a week gets taken over by strep throat or an ear infection, guess what, you jump back on that boat of routine that was set up back to smooth sailing waters & SEIZE THE DAY!

More, more, more! If this were my last year, wouldnt I want to do more? Wouldnt I want to be more? Wouldnt I want to give more? That's why I say it 3x! More, More, More! I want to be MORE educated on Charlotte's illness, our path with it. I want to give more to the community. I want to be MORE to my friends, to my girls & to my husband. This is the motivator word. And with my routine, I can find time to do MORE, more, MORE!

With every strength lies a weakness. So I think while I am out there trying for more, I also need to take time (in my routine) to be still. I need to journal more, I need to meditate & pray more, I need to be still in silence so I can HEAR more. (oh there's that MORE again!) :)

I will write these 3 words down in my Moleskin (that I carry around in my purse, you never know when a good idea will hit ya!) & remind myself of them. I will get out my calendar more often & get my routine going! I will bring my family into the fold of the routine so they are a part of its success. They will also be a part of More & Still as well.

Ah....2009. There you have it. Those are my thoughts on this first day! Where are you headed? I would love to hear!

Update on Charlotte:
We had her rheumatology appt on the 31st. There are no flares. She still complains about hurting, she's not 100% well (cough, etc) which I think plays with her body - but no visible flares. Our dr. would like to start looking ahead to stretching out her Remicade (chemo) treatments. Charlotte is currently on a every 4 week schedule. He wants to start doing every 5 weeks for 3 months, then creep it out to every 6 weeks.

I dont feel confident in that movement QUITE yet only because:
Her eyes have only been clear of uveitis since the end of June.
She has only been off of the steroid eye drop to control the uveitis since August.

So she has only been on her current cocktail (which is workign!) for about 6 months. But her health isnt steady right now, so I just dont feel confident in changing anything until after winter.

When I asked why would we alter, why stretch, the answer given was, "money/convenience & we need to start seeing if her body can hold w/out medicines."
Ok my thought process is: Insurance pays / its not convenient but its not convenient to go backwards either & if she gets a flair in this alteration, then we start ALL OVER AGAIN from the very beginning (including the steroid eye drops).

I dont feel confident in playing the game yet. ??????
So January Remicade will take place the 1st week of january.... and we will continue on our path for a few more months....
Update: November correspondence w/ Dr. Foster / my ? & his answer in all caps:

Charlotte has been off the pred forte drops since the end of August & has remained clear. Our pediatric rheumatologist said we mght start thinkign about stretching our remicade treatments from 4 weeks to 5 weeks (and then 6 weeks). What is your opinion on pushing remicade out farther than every four weeks? (detailed history below) PLEASE DO NOT DO THIS; IT IS ALWAYS A MISTAKE. KEEP IT AT EVERY 4 WEEKS FOR AT LEAST 6 MONTHS BEFORE ATTEMPTING TO STRETCH THE INTERVAL BETWEEN INFUSIONS