I Am Thankful For....

As we approach the holiday season, with Thanksgiving kicking it off, I felt it would be appropriate to do a post about being thankful. Having a child with not one but TWO chronic illnesses, well, it can be very easy to get caught up in the negatives of life. But really, we have so very much to be thankful for. So, here goes....

1) First and foremost I am thankful that I finally, after 36 years of attending various churches I finally know what it means to love God our Father with all my heart and soul and feel His love in return.
2) I am thankful for my family and my friends. Without them life would be boring and lonely. They also help keep me on the straight and narrow. Some of them by forcing me to keep THEM on the straight and narrow ;o)
3) My church, they have become my friends and my family. I can't imagine my life without them now. It's like they have always been there. So #3 really ties #'s 1 & 2 together.
4)Laughter...I am so very thankful for laughter. On my worst days when I feel like nothing is worth it anymore, something or someone makes me laugh and that is all it takes to make me feel better.
5)I am thankful for the medicines that Bean takes. Because despite their dangers and risks, they are what is giving her a somewhat "normal" life.
6) I am even thankful for her illnesses. They are what have shaped and defined our lives to what they are now. They have made us stronger, more confident, made us move to a new state, start our new lives, etc (see #'s 1-3)

These are just a few examples. I mean really I could go on and on in great detail forever of the things I am thankful for. The sun, moon, stars, trees, ocean, clouds, FOOD, music, movies, blankets warm from the dryer, soft kisses, sticky hands and chubby arms, cherub smiles, a good book, naps, sleeping children, good dreams, PJ days, pancake breakfasts with lots of syrup, hot coffee in the morning, Christmas morning with eyes of wonder, crunchy leaves in the Fall......See what I mean? I could go on forever :o)
I hope that you and yours have a blessed holiday season. Please remember, take a moment and count your blessings. We ALL have them.

1 Timothy 4:4-5 (New International Version, ©2010)

4 For everything God created is good, and nothing is to be rejected if it is received with thanksgiving, 5 because it is consecrated by the word of God and prayer.

2010 Jingle Bell Walk/Run For Arthritis

"2010 LKN Jingle Bell Walk/Run For Arthritis"

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This is probably more for me than you...

I think this post will mostly just be for documentary purposes for myself. Who knows? Maybe it will help someone. Ya never know right? So, anyway, Bean has been battling fatigue for sometime now. She pretty much always tires out more than a "normal, healthy" kid. But lately it just seems worse. And of course with this comes.....IRRITABILITY. Oh yeah, that's a good time. All this week she has been struggling to wake up in the morning for school. Wake up time for her is 6:45 and bed time is 8:00. I don't really think that I could get her to bed before 8 and there is no way to let her sleep later on a school day. So, she struggles to wake up and get herself dressed, she then slides down the stairs on her tush, lays down while I get her meds and oatmeal ready, BARELY makes it through sitting up long enough to feed herself and drink her juice, watching her lift her spoon she may as well be lifting a brick. She then crawls, not walks, crawls up the stairs to brush her teeth and hair and then we are off to the bus stop. We used to walk to the bus stop as it's just around the corner. Now we drive. She says it's too cold on her legs and she just doesn't have the energy to walk there and stand while waiting on the bus. Yesterday at school she wet her pants. Really?? Not just a dribble and then she stopped it. She soaked them and said she had no clue that she even had to go. Gee, tired much? Today I kept her home from school and she has finally admitted that YES, she IS more tired than her "normal tired". But what the heck am I supposed to do? She isn't sick. No fever, headache, tummy ache, nothing. How long do I keep her home for being tired? How long will this go on? I was hoping to get her in to her regular ped today but she is off on Thursdays, of course. Bean's crummy mood is really on my last nerve even though I know that it isn't her fault. I really wish she would just nap instead of being so moody and pissy ya know? If she's admitting that she's tired, than why won't she rest?! *sigh* Pray for us y'all. It's going to be a very long day.

This Just Isn't Acceptable

The map to the left is clearly a map of the United States. The red colored areas are where you can find a pediatric rheumatologist. The yellow colored areas are where you can find a rheumatologist that will treat children. Speaking from personal experience. Do NOT take your child to anything other than a board certified pediatric rheumatologist. A rheumatologist trained to treat adults is not necessarily trained to treat children and YES there IS a difference! So, that all being said, are you seeing a problem with this map?

IN 2007 the Health Resources and Services Administration (HRSA) called for a 75% increase in the number of pediatric rheumatologists. An estimated 300,000 children suffer from Juvenile Arthritis in one form or another yet there are fewer than 200 board certified pediatric rheumatologists in this country. Juvenile Arthritis is one of the most common chronic illnesses in children and if left untreated, or mistreated, can lead to severe disability. According to this 2007 HRSA report, 13 states do not currently have a certified practicing pediatric rheumatologist. This means that on average, children and their families will need to travel an estimated 57 miles to the nearest pediatric rheumatologist. I don't know, looking at that map, it looks like a lot farther than 57 miles for most families. When we lived in Maine we were traveling approximately 41 miles to see the one and only rheumatologist in the state that would treat children. He however was NOT a pediatric rheumatologist. To get to the nearest pediatric rheumatologist, it would have been more like 143 miles across 3 states. Considering the frequency of the appointments and the fact that my daughter can't be in a car for more than 20 minutes before her legs hurt, this wasn't acceptable. So, we up and moved. We moved from Maine to NC. When we first got here Bean was being seen at Duke Children's in Durham. FANTASTIC hospital with amazing doctors. However, that was still a 125 mile trip. EACH WAY. Way too much for Bean. And for ME to be driving that! So we switched to Brenner's Children's, which is part of Wake Forest University Baptist Medical Center. Still a fantastic place and we love her doctor. Still a 60 mile drive but it's doable. Ideally I would love for us to have a specialist right here in Mooresville. Ideally I would like lots of things. But I think you get my point here. 200 doctors for 300,000 children?? That's not acceptable. I am not even going to get into comparing the ratios of other childhood illnesses and their needed specialists. Because honestly do we want any other parent and their child to suffer and struggle like we do? No, of course not. So, what can we do? Let our voices be heard. Tell your local Congressman (or woman) about these 300,000 kids. Do they even know?? Probably not! Tell them about our day to day struggles. Tell them about our need for more specialists. If you can, plan on attending the 2011 Advocacy Summit. Ultimately I dream of a cure so that no child should suffer. But until that day comes, we need more trained and certified specialists to care for our kids.

Two Shot Week

Two shot week for Bean. She gets MTX first since that's the "easy" one. Then she gets the Humira. That's the BAD one. I can't even imagine the pain of it. She used to scream and cry and ask us, "WHY are you doing this to me?!". It was so heartbreaking. She has come such a long way. SO proud of my Bean. My tiny soldier. Within minutes she was up and playing Super Mario something or other in the Wii :)

Perseverance

per·se·ver·ance

  [pur-suh-veer-uhns]
A

–noun

1.

steady persistence in a course of action, a purpose, a state,etc., esp. in spite of difficulties,

obstacles, or discouragement.

Now that my friends is a word that you truly can't appreciate until it is put to use. *sigh* So on Monday morning we met with Beanz teacher and the school guidance counselor as mentioned here. I knew that we wouldn't actually be writing one up that morning and putting it all in place. However, I also wasn't expecting how we were all treated by the "counselor". So, so, so cold. I just can't seem to wrap my mind around all of it. According to her, since Bean is "excelling academically she is not entitled to a 504 plan, that is for students that need assistance accessing academics." Umm...no I don't believe so. That would be an IEP. We aren't asking for an IEP. We are asking for a "medically necessary 504" as her doctor called it. IEP's or individualized education programs are designed for children that need assistance with their learning process. Since Bean is at or above grade level in all subjects, clearly she doesn't need an IEP. A 504, of which she is legally entitled to under Section 504 of the Rehabilitation Act of 1973, is simply to ensure that she is safe and comfortable at school. That any accommodations that she may need as a child suffering not one but TWO chronic illnesses are in fact being made. Such as, a chair that isn't painful to sit in, time to stand up and walk around if need be, a place to rest during the day, special writing tools or even being excused from writing altogether, permission to use a rolling book bag, extra time to transition between classes, modified gym class, a nurses pass on hand for her to use at any given time, no limit on excused absences <----THAT is a big one. Children like my Bean miss a whole lot of school. For one thing, they have frequent doctors appointments, routine labs that need to be done, the illnesses themselves will cause days that make them need to miss school, then there is the fact that they have NO immune system and therefor pick up EVERY bug around. The tiniest bug that may give a "normal" kid a runny nose, can lay these kids out for WEEKS. These are just a few examples of why my Bean and the 300,000 kids just like her need a 504 in place. The "counselor" couldn't or wouldn't see any of this. Her teacher understands what Bean goes through and is willing to make any accommodations that she may need. But what if she leaves? What if the nurse leaves? What about next year? And the year after that? She is SIX years old!!!! I need to make sure that she gets what she needs NOW and through COLLEGE. YES, a 504 CAN go to college with your child. Once in place a 504 can be changed at anytime and should be reviewed at the beginning of every school year. The Arthritis Foundation has some great tips for school success. I also encourage you to reach out to your local office for help. I did after that waste of a meeting. I emailed our local office and heard back the next day. It felt so good to know that I have someone with me, that has my back in my fight for my Bean. I also would encourage you to go into your meeting prepared. Assumptions are SO dangerous. I simply assumed that the "counselor" would obviously be willing to help my child. Bring ALL the documentation that you can. Have a letter from all of your child's doctors explaining the diagnosis, a list of current medications and their side effects, a letter from your local AF office is a good idea too. So as it stands now, I am gathering all my documentation. Once I have it all neat and tidy I will be scheduling our next meeting. *rubshandstogether* CAN'T WAIT!

A Clear Explanation Of What Rheumatoid Arthritis Does

Again, couldn't find a video showing a child. Always an older person. I really wish that someone would make these videos about the 300,000 CHILDREN that suffer. But, at any rate, this is what is going on inside my baby girls body. You can't see it from the outside, but make no mistake, it IS there and it IS painful and exhausting for her.

A Little Of this, A Little Of That....

So let's see, where are we? Okay, so, both of my small ones have been "junky" for some time now. Lots of snot and mucus but no fever. So, whadda ya do? No fever, not sick right? Just keep rinsing the mucus down the sink and wiping the snot. Well, on Wednesday I had Bub into the pediatrician for a follow up on something else. While he was in there anyway she gave him the usual once over. Hmm....his lungs are junky. I'm going to give a 3 day course of Zithromax to get it out of his system. So I tell her that if he's needing antibiotics that I had better get Bean in because she sounds the same! Only snottier! So I brought Bean in this morning. Now Bub just finished his last dose this morning and is NO different. She listens to Bean, Yup she's junky too. They are now both going on Omnicef. I need to start keeping better track. I am 98% sure that this is what they always end up on after trying Zithromax. Going to have to look into that. So we agree that Bean needs to skip her MTX this weekend to allow her body, along with the Omnicef to kick this crap out and get her feeling better! Poor thing has been so tired and washed out. Seeing the bags under her eyes kills me.

Speaking of eyes, I noticed today while waiting for the doctor, her eyes are very bloodshot. Hmm...from being tired? Maybe. From a Uveitis flare? Maybe. So....what do I do? I hate to bring her in for nothing. I don't want to be that Panicky Parent ya know? I'm thinking that if there is no improvement in the appearance of her eyes by Monday then I am going to call and get her in. Better safe than sorry I suppose.

At her last visit with the rheum, seen here, he said her joints were fine. Not flaring. That it's the hyper mobility causing the pain. For me? The jury is still out. I don't know doc. Mornings have been AWFUL for her. She is walking peg legged, won't bend down because it hurts her back.

Sitting is getting to be more and more painful but so is standing. Well WTH is she supposed to do at school??

And speaking of THAT, we are finally going to get her on a 504 plan at school. We really should have done it last year. She is not a "normal kid" and so can't be treated or taught as one. I mentioned it to her teacher and I swear the woman sighed with relief! HAHAHA! She is in 100% agreement that Bean needs a 504. So, now we just need to figure out what accommodations she'll need. I need to at least have a rough idea put together by Monday morning when we meet with her teacher and the school guidance counselor. I know that we won't get it all ironed out that morning but it's a start. And my AWESOME JRA MOMMY SOLDIERS have helped me tremendously with this!!! I cannot thank God enough for bringing these families into my life.

These are pics that I took of Bean reading the Bible that she saw at the doctors office today. I have NEVER seen a Bible there. It was very strange. She got so excited when she spotted it. She snatched it up, climbed up onto the table, laid out and started reading :)

This Is GREAT News!

Arthritis Foundation Patient Advocate to Testify at FDA Hearing on Approval Pathway for Biosimilars

ATLANTA, Nov. 2, 2010 /PRNewswire-USNewswire/ -- Arthritis Foundation patient advocate, Jan Wyatt, PhD, will provide oral testimony on behalf of the approximately 4 million Americans with inflammatory arthritis at a Food and Drug Administration (FDA) hearing today. The hearing will focus on issues and challenges associated with an approval pathway for biologic products that are highly similar "biosimilar" or interchangeable with FDA-licensed products.

"The Arthritis Foundation commends the FDA for holding today's hearing to help guide the agency in moving forward with regulating these potential new products," says Amy Melnick, MPA, Arthritis Foundation vice president of advocacy.

Wyatt, who was diagnosed with rheumatoid arthritis in 2004, credits innovative scientific breakthroughs in biomedical research and use of a biologic for radically altering the trajectory of her disease. "A little over 10 years ago, a diagnosis of rheumatoid arthritis or juvenile arthritis would have meant a future of pain, loss of function and limited mobility," says Wyatt. "I am truly grateful for these life-transforming therapies."

Biologic therapies are regarded as highly effective forms of treatment for the management of symptoms and to reduce the risk of bone and joint damage for people with rheumatoid and other inflammatory forms of arthritis. Unfortunately, access to biologic therapies is limited or non-existent for many people due to their high cost. For these individuals, biosimilars represent great promise to improve their access to safe, effective and cost-effective options.

As new therapies are introduced, the Arthritis Foundation strongly recommends that the FDA require post-marketing studies of the newly approved biologics and biosimilars, including possible registry participation for surveillance purposes. In addition, the Arthritis Foundation believes more research is needed to guide the selection of the best biologic for the individual. Patients fortunate enough to have access to existing therapies often must try several therapies before finding one that works.

"Patients with inflammatory arthritis need to be assured that biologic and biosimilar therapies will be of high quality, accessible, safe and effective," says Wyatt.

The Arthritis Foundation welcomes the approval of new, safe and effective biosimilars and urges the FDA to:

• Move expeditiously to create a regulatory pathway that provides appropriate oversight, ensures patient safety and ensures access to these potentially lower-cost biologic products.
• Require clinical studies to ensure biosimilars work as well as approved products in the targeted population.
• Require rigorous post-marketing surveillance for any newly approved biologic and/or biosimilar and to seek ways to improve the current system for reporting and responding to adverse events.
• Reach out to patient organizations, such as the Arthritis Foundation, to improve its communication efforts regarding biologic products.

More information about inflammatory arthritis and its treatments is available on www.arthritis.org.

The Arthritis Foundation (www.arthritis.org) is the leading health organization addressing the needs of the 50 million Americans, including 300,000 children, living with arthritis, the nation's most common cause of disability. The Foundation helps individuals take control of arthritis by providing public health education; pursuing public policy and legislation; supporting research and conducting evidence-based programs to improve the quality of life for those living with arthritis.

SOURCE Arthritis Foundation

AUCTION CLOSED!

And that's it folks! Thank you so much to all that placed bids but there can only be ONE winner. Well...three if you want to get technical. Anyway, the Auction For Arthritis has officially closed. I will be messaging the three winners. Thanks again! This helped us raise an addition $115 for The Arthritis Foundation! WOOT!