Friday, March 27, 2009

She will need a little help...

Talk about proof that a JRA child cant heal their body normally like a well child can, I give you exhibit A. A simple hang nail growing wrong & getting infected.

After a week of Dr. Mom, cleaning it out 2x a day w/ hydrogen peroxide, it wasn't getting better on its own.

When Ryan saw it & gasped, it was the 2nd opinion that got her into the peds office getting an anti-biotic to help with the healing of this. Also, he got a lesson in how to "trim toenails." Something I am sure he knows all about but that's my job w/ the girls & OOPSIE DAISY... ok fine, I will go straight across from now on.

Another piece of evidence that shows a little "sumthin" has to be helped by a little "sumthin" to heal when her body cant heal it by itself. Charlotte's body is too busy fighting bigger wars than to worry about a little hangnail...

And life is busy with "tinkering!" She said, "This is something Tinkerbell would build!"

Monday, March 23, 2009

"Living with Juvenile Arthritis"

I was interviewed with REGENCE Podcasts about our family living with JRA in Charlotte. This is a podcast that they send out to their insurance members & then post on iTunes varying on the topics.

Its 12 minutes long & its a great tutorial of JRA from a young child, high schooler, then our Doctor. I sent it to our teachers (future teachers) & want to share because its a GREAT piece of education to understand the disease and how kids deal with it at school & in life.

Thank you for listening! I would love to hear what you thought when you heard it!!

Ryan playing bingo with Charlotte & Ellie & our friends: Katrina & Kendra

Sunday, March 15, 2009

Best Buys

The 2009 INSTYLE best beauty buys (april 2009) just came out & there are a few new things I am interested in. Just a few. I have been reading this list for ... gosh... ?? at least 5-8 years now, since this is my longest running mag subscription. So the "award winners" that have been mentioned year after year, have become staples of mine: Dior Show mascara, Tweezerman tweezers, Lancome Bi-Facil eye makeup remover... Check it out! They have numerous experts in the field that give their "favorites" & so its always fun to check out their opinion. They have been right on in my opinion (minus the pantene shampoo, still dont like it...).

Here's my 2009 drugstore run (sorted by brand so its easy to find at Target or Walgreens!):
+ Lipstick: Revolon Super Lustrous
- I am lipgloss girl myself, but I have a family wedding in May that's an evening one that might require a step up from my usual gloss:) I am going to look for a shade in rose, for that "just bit my lip" look. Not to be confused with "I ate too fast & totally just bit my tongue" look. Not cute.

+ Eye Shadow: Paris HIP Powder
- I am always looking for the nudes for everyday wear... Like to switch them out once in awhile.

+ Concealor: Erace cover up
- I used this around my nose, until i get the "zap out" w/ lasers... will give this a test drive.

+ Rosacea Treatment: Redness Relief SPF 15
+ Night Cream: Redness Relief
- hence the above mentioned red around my nose... :( its hereditary, so thanks uncle oscar (heard he had a big ole rosacea nose, I wont let it get to that point, believe me!)

+ Sport Sunscreen: Continueas Spray SPF 70
- I used this last year, its fab, just a reminder to myself to pick up a new couple of bottles for the season ahead!

And here's my more extensive shopping list....
+ Brow Filler (evidently we can only get this in 2 stores in our area - PRODUCT @ Bridgeport).
- Brows are my struggling dilemna... i would love to find a product for my brows that I cant live without. Maybe this?!

+ Exfoliator: Clarins one-step gentle cleanser.
- I usually cant use these yummy smelling things due to my sensitivity in my skin & so i am a faithful user of Sonja Dakar (The Skin Problem Specialists), but my Sonja Dakar organic scrub stings my face & I am going to take a guess that 'stinging' isnt what you WANT to have happening during an exfolliation. And not the good kind of stinging (is there a good kind of stinging?! Does that go with my "just bit my lip" look?).

+ Round Brush: G5 - they liked this one.
- I have the written-up Mason Pearson POPULAR brush (My sweet friend Darcy got that for me, its my FAVE & I have had it now for 5+ years!) - so now i am curious about this round brush that has similar bristles as the POPULAR.

Alright that's my shopping list.... Did anything catch your eye in this years recco's? Does Allure do the same yearly write up? I am toying with getting a subscription to that this year...???

Tuesday, March 10, 2009

Warm it up with love

When Charlotte's arthritis was starting out (just about a year & 1/2 ago), she was in pain & wouldnt walk till her joints warmed up. We kissed away October since our mornings were spent snuggling on the couch or in a hot bath (before the meds kicked in, before she was injected in her joints to make them limber again). I wish BUCKY would have had this cute little "thang" when we were going through that phase.

I bet Miss Particular would have loved the feel and the warmth of Bucky's kid-friendly toy:

Warm in the microwave or chill in the freezer as the owie demands. Comfortable embroidered covers of super-soft, sustainable bamboo terrycloth. Premium whole buckwheat seed filling. Machine washable cover. Size: 6" x 6"

This is a GREAT toy/helper if you have a child who has leg pains in the middle of the night, had a long day of soccer & is sore at the end of the evening - any of those scenarios that you can imagine where they say "Mom, my leg hurts" or "Mom, my ankle hurts." Great idea Bucky!

AND PS - they are 20% off right now - making each little warmup/cooldown toy under $10!!

I love Bucky products - They are a Seattle company. Ever since I listened to Martha Stewart on her radio show talk the disgust of pillows & what grows & lurks in their moist, unwashed spaces, I have slept with their Duo Bed Pillow of buckwheat & millet. I went with the duo because air is able to ciruclate in the buckwheat & millet, keeping it germ free AND I can wash it! Its the most comfortable thing ever & when space allows in my suitcase, it travels with me too! Check them out!

Thursday, March 5, 2009

They tried to make me go to REMICADE & I said, No, NO, NO!

You always hope that over time, it gets easier. Practice makes perfect & yadda, yadda, yadda....

Charlotte (@ 3 1/2 this month) decided she was done with her Remicade treatments today (next month will mark a year that she's been going in every 4 weeks for Remicade chemo treatments for her arthritis in her eyes - uveitis).
She & I made the trek together, but not before Emma & Ellie helped pick out her clothes & pack some toys & give her their stuffed animals to take (that was super nice & did help a bit! Ryan stayed home with Emma who is almost 100% from having a virus).

It started in the valet parking lot when she refused to get out of the car. There I am with the big huge bag o'stuff, my purse, her pillow, "C'mon Charlotte, let's go."

Screaming, "NO!!!!!!! I AM NOT GOING IN!!!!!!!!!!"

Poor valet boy :)

Worse for the nurses who heard Charlotte at the end of the hall, refusing to go through the doors of the Children's Day Treatment Center.

Screaming, "NO!!!!!!! I AM NOT GOING IN!!!!!!!!!!!!"

Just walking through the doors she started to freak out & scream & cry with convulsions. I had to drop all the bags, pick her up, sit in a chair and rock her & try to calm her down. I had her breathe deep breaths, shhhh'd her, "its ok...", and just stopped it all for a few minutes. And she was ok for a few minutes, getting out her movies, seeing the new polly pocket (cinderella) that I brought for her... and then it was time for the IV.

Imagine the screaming again....Her blood pressure was through the roof. She popped the needle out of her vein of the right arm so they had to try the same vein but higher up & that didn't work, so then it was on to the left arm, where they got it in & proceeded to take blood for lab work. The entire time I continue to hold Charlotte like a psych patient, sitting on my lap with her legs in between mine, bear hugging her with one arm & holding her head with the other trying to keep her from looking (gets her worked up more).

WORN OUT - ya so was Charlotte (Just Kidding)!

No kinks in the line, so it went swimmingly smooth once it was in, stint on & wrapped with tape & after ALLLLL that.... she calmed down, hung out with her friends Miss Cindy & Miss Dawn & entertained them with her 3 1/2 year old stories of her stinky bottom & how she peed the bed last night, "but I just went on the other end & slept." Ok that part - not true :) Stinky bottom?! Who knows :) Between the videos of Schoolhouse Rock, Chicka Chicka Boom Boom & Bella Ballerina, we wrapped up 4.5 hours later.

So this whole idea of "getting easier...." Hmmmm.... I was optimistic! And I guess it cant get much worse than screaming at the nurses at the top of your lungs in front of all the other patients (I have never heard other children like I have heard Charlotte, are they all much better troopers?!?!? What must they think???). I do have better humor about it all, but it is tough. I did almost cry today during the IV because its very hard to see her THAT upset & angry about the whole situation. And I have cried during the initial injection, but... I also know that it will be over soon, so we gotta buck up campers & get'er done. The nurses know that if I were a rich benefactor, I would put a fan in the injection room to keep us all cool as we are sweating trying to keep Charlotte down & injecting her. So... cheers to it being easier, or at least not this bad for awhile....
PS - Eyes remain quiet (appt yesterday - all good).
PSS - I know we go through this once a month for good reason & I am thankful the meds are doing their job.
PSSS - I am very thankful the meds are doing their job!!

Wednesday, March 4, 2009

Time flies when you have a consistent low-grade temp!

Emma, the oldest, has been holding on to 101/100 point something for the last 7 days. Its a nasty virus thats going around.... and its consistently, staying!

She had gotten the chicken pox booster last week & at first we thought her fever was due to a reaction to the booster, which had us a little freaked out becaues there is a slight chance for children to GET the pox (a slighter littler version of it) when they get the booster. Emma had a 1.5 inch in diameter, red swelling on her arm where the injection had been so we watched it & called the peds.

Since we have a child in the house with a suppressed immune system (Charlotte: with JRA, she is on 1 immune suppressant drug & one TNF inhibitaor drug), we asked the ped at what point should we freak out & bring out the bubble for her to live in.

The Ped said that we watch Emma, if she were to break out in Pox, he would consult w/ the Rheumy. It didnt get to that point, Emma just has a virus. But living with Charlotte makes us very sensitive to the fact that any illnesses going around the community can be more detrimental to a child in Charlotte's condition than a well-child.

Here's what we learned about our "well-children" getting the chicken pox booster, and the possibility of infecting a non-well child from our Rheumy:

" quote from the Red Book regarding transmission: "Experience from 1995 until March 2005 with more than 56 million doses of varicella vaccine distributed in the United States indicates that vaccine-associated virus transmission to contacts is rare (only 5 well-documented cases) and the risk of transmission exists only if a rash develops on the immunized person." I'd add to the statement that transmission would probably be even less likely from the booster (2nd dose) than with the first installment."

Now... Charlotte got her chicken pox vaccine at age 1, before she was diagnosed with arthritis. Will i do the booster? probably not, but that's for a few years, so i have some time to continue research before we need to make that decision. Will i continue to keep my well-children well? Yes. I would rather Ellie (the next in line at age 6) get the booster and NOT get pox, than risk it. Again, she has a few years for that as well. And by that time, hopefully Charlotte's immune system is on its way to regular/calm? I have no idea, that's a hope, but will not have anything to do with keeping Emma & Ellie healthy....

Tomorrow is Remicade day & with Emma still down w/ her virus, it looks like we will ro-sham-bow for the privilege of going with Charlotte to Children's Day Treatment center for her monthly chemo :)

When I called on Monday to find out our time that we can get in (I always call that week to see if we can get in earlier than our 1230 scheduled), they gave me some great news about the Tottie's Pretties STRETCHY bands that we donated last month in a promotion with our fans!

"Erika! You should see these cute little girls going through chemo & have no hair, wearing these beautiful stretchy headbands with these bright, beautiful flowers! They LOVE THEM! I only have about 3 left to give out!"

I got the glue gun go& will give them a dozen more to hand out to these brave little girls who are going through their chemo treatments!!

We also have 2 nurses about to have their 1st babies & its been fun buying for that "1st"! I love these new "diaper bags"!!! I was on ETSY finding DIAPEE WIPEES - a cute little pouch that holds your wipes & a few diapers, and can turn ANY bag into a diaper bag! These bags are so styling, I bought two - I want an excuse to keep one :) Maybe its a "doggy diaper bag" for the park?! :) HA HA HA!!!