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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Saturday, October 30, 2010

As if poison isn't dangerous enough....

...this had to happen. So thankful that someone found this article and got the info out there. Thankfully Beanz MTX isn't a part of this recall but so many of our friends not only have some of them, but have also USED some of them. Again, thankfully, everyone seems to be okay. Praying they continue to be unaffected.

Sandoz, a subsidiary of Novartis, a multinational pharmaceutical company, has initiated a voluntary recall on their drug vials of Methotrexate. The Methotrexate recall was initiated today after Sandoz found tiny glass particles may be in the vials. If injected, the glass could possible make it’s way into the human body, and in some cases cause major health issues, or even death. The glass particles are from delamination of the glass used for the vials. Sandoz has stated the following in a press release just issued on the FDA website this afternoon:

While it is unlikely, parenteral injection of drug from the affected lots could lead to serious adverse events, resulting in disability and death. Additionally, neurologic damage could result from intrathecal administration. Potential adverse events after intravenous administration include local damage to blood vessels in the lung, localized swelling, and granuloma formation. Intramuscular administration could result in foreign-body inflammatory response, with local pain, swelling and possible long term granuloma formation. Intra-arterial administration could result in damage to blood vessels in the distal extremities or organs. To date, Sandoz has not received any adverse event reports or product complaints attributable to particles from any lot of methotrexate, including the lots where flakes have been found.

The vials involved in this Methotrexate recall are only the 50mg/2mL and 250mg/10mL vials. The products all expired between December of this year and March of 2012, and have the following lot numbers, labels, and NDC numbers.

For the 50mg / 2mL vials of Methotrexate:
NDC Number : 66758-040-02 (10 vial pack) and 66758-040-01 (Individual vial)
Parenta labels with lot numbers, 92395606, 92760803, 92965104, 92965106, 92965904, 93255704, 93502204, 93635404, 93681704
Sandoz labels with lot numbers, 93794904, 95198604, 95357804, 95537704, 95987004

For the 250mg / 10mL vials of Methotrexate:
NDC Number : 66758-040-08 (10 vial pack) and 66758-040-07 (Individual vial)
Parenta labels with lot numbers, 92395703, 92760903, 92965203, 92966003, 93255803, 93502303, 93635503
Sandoz labels with lot numbers, 93795003, 95198703, 95357903

Pharmacies, distributors, and wholesalers will receive letters letting them known about the recall. If you, as a patient, have any of the recalled products in your possession, Sandoz asks that you immediately stop using them, and contact your physician for further instructions. Sandoz, which is headquartered in Holzkirchen, Germany, was founded in 2003, and currently employs over 22,000 people.

Friday, October 29, 2010

Wanted to post an update. The Scentsy high bid is currently at $60 plus shipping costs, the Vera Bradley handbag is at $45, and the jewelry is at $10. The auction will close at 8:00 PM EST on Monday November 1st. Right now I am able to contact people when they are outbid. If I start getting a lot of bids (which I am hoping for!), then it may have to go to a silent auction. In which case I would recommend you bid at your max amount from the start. Thank you all SO much for your donations of goods as well as for your bids. I am so amazed at the generosity of my friends and family. We are all doing such a great thing to bring awareness and funding to arthritis.


I have some AWESOME friends that have donated items for me to hold an auction here on my blog! Here is how it will work: I will keep the auction open for ONE WEEK. Email your bids to , I will notify the highest bidder that they have won when the auction closes. The highest bidder will then make a donation in that amount to Team Jingle Beanz for the Lake Norman Jingle Bell Walk/Run for Arthritis. Once the donation has been made, your items ship! So, without further ado, here they are!!

Wednesday, October 27, 2010

Monday, October 25, 2010


So we went to Winston Salem today for Beanz rheumatology appointment. I had really been looking forward to this appointment because of all the pain she has been having. The good news is: her arthritis looks GREAT! Everything is quiet as of right now. No hot, swollen, stiff joints. Also the fluid that had been on her knees at the last appointment is gone! YESSAH! The bad news: all the pain that she has been having is coming from joint hypermobility and femoral anteversion. There is nothing that can be done either. Just stop when something hurts and take Motrin and Tylenol. Well that's a pisser! So once again we take the good with the bad. I guess it's okay. We've learned to roll with the punches. She also got her flu shot today and had her labs done. SUCH a trooper!! This time not even ONE tear was shed! WOOHOO! And we got to go to Krispy Kreme after because she was such a good girl! So, unless something comes up with her JRA between now and February, we don't have to go back until February 12th!


I have some AWESOME friends that have donated items for me to hold an auction here on my blog! Here is how it will work: I will keep the auction open for ONE WEEK. Email your bids to , I will notify the highest bidder that they have won when the auction closes. The highest bidder will then make a donation in that amount to Team Jingle Beanz for the Lake Norman Jingle Bell Walk/Run for Arthritis. Once the donation has been made, your items ship! So, without further ado, here they are!!

Thursday, October 21, 2010

Arthritis Act...ACT NOW!

Please click the blue link below, fill in the boxes with some basic info (name, address, etc.), hit send and POOF! It will magically be sent to YOUR local Senators! It is THAT easy folks! Nearly 50 million adults and 300,000 children need you to do this for them. Thank you :)

We Need YOU to Pass the Arthritis Act Into Law
Congress is expected to return to Washington DC on November 15. Before then, both of your Senators need to hear from YOU, your family, and your friends. The Arthritis Act is waiting with many, many other House-passed bills for action by the Senate. Only those bills that must pass, such as federal funding bills, or ones with overwhelming support will be considered by the Senate. Tell your Senators to pass H.R. 1210 before they adjourn. If not, the bill dies upon adjournment. It is now or never to make the Arthritis Prevention, Control, and Cure Act a law!

Wednesday, October 20, 2010

Rheumatoid Arthritis (RA) Pictures Slideshow on

Somewhat informational. Disappointed that most of the people in the photos are OLD. KIDS get arthritis TOO!!

Rheumatoid Arthritis (RA) Pictures Slideshow on

WOW! We Have come a long way baby....


The Beginning

Jennas journey started over the Summer of 2008. One morning my husband said, "Why are Jennas knees square?". I brushed him off, thought he was crazy. A couple of days later I was at the beach with my Mother and my three kids. My Mother says to me, "Look at Jennas knees.....they're square.". Oh crap. Must be something to it. So I look and sure enough. Big square knees. How the heck did I miss that?! So then we started wondering how long has this been going on? And what on earth is it? She said they didn't hurt her. Hmmm......odd. Sure looked painful to us. We went home and looked through pictures on my computer to try to narrow down when this all started. It seemed as though it started in May. So not to long. Next day she broke out in some kind of God awful rash that was INCREDIBLY itchy and painful so I took her to the doctors. While we were there I asked the doctor to take a look at her knees. Oh yeah....she agreed. Those don't look right. The doctor ordered labs and xrays that day. Her xray should fluid and inflammation so she referred her to the ONLY rheumatologist in our state that deals with children. At this point we still had no idea why her knees were like this. Is it arthritis? No clue. Never found out what the rash was by the way. The rheumatologist was able to get her in quickly. Within a few weeks we were at our first appointment with him. He found swollen joints that we hadn't even noticed. What kind of parents are we? Not only were her knees swollen but also her ankle and her elbow. She still was saying nothing hurt. That really puzzled us as well as the doctor. More tests and more xrays. She was sent to the eye doctor to have her eyes checked for inflamatory cells. All clear. Phew!Lyme disease was ruled out. Leaving really only arthritis for a diagnosis. At this point I still was not convinced. MAYBE it's something else. Maybe. Then things started getting worse. Her elbow was SO swollen you couldn't even see the joint. She couldn't bend it now either. Her knees were so big she couldn't stand with her feet together. Her feet were constantly hurting her. Cheering...once a thrill for her was now torture. She was started on Naproxen. At first it seemed to be helping. It reduced her swelling a teeny bit. Then she broke out in these awful blistery type sores. She was having an allergic reaction to the medicine. Her doctors had never seen a reaction quite like it. Of course. She was then put on Methotrexate. I really don't like the sounds of this medicine. It seems SO harsh for her tiny four year old body. She needs to take folic acid daily because of the damage it will do to her immune system and needs frequent lab work to make sure all is well. The rash goes away immediately after stopping the Naproxen. The Methotrexate doesn't seem to affect her stomach or her hair. I was told to expect both hair fall out and upset tummies. After a couple months on the Methotrexate there is still no improvement in her swelling and her pain. He suggests cortisone shots to help get things moving. Yikes. That just sounds SO severe. He assures me this is a very natural step in treatment. Okay.....I trust you. We get her admitted to the Barbara Bush Pediatric wing at the hospital so they can put her under for this. She won't feel a thing and won't even remember being there. Uh huh. NOT what happened. The attending pediatrician decided on her own that it was not neccesary to have her completely out for a "two minute procedure". Wish she had shared that with me! They tried to give her something in her IV line to make her drowsy. The IV failed. Great. She was WIDE awake to have her knees drained and have the cortisone shots. Her rheumatologist was nearly as upset as me. Even he had no idea. My poor baby. I felt like the worst Mother ever. The next day she was very sore and stiff. Still very swollen. I know he told me to expect that but I still was disappointed. But the NEXT day......WOW! Look at those knees! Beautiful, perfect, tiny little girl knees! Holy Moses! I could not believe my eyes. And did she feel GOOD! I had not seen her move like that in so long it made me cry for days to watch her move freely. We saw the doctor is his office the following week and he was more than pleased with what he saw. Excellent range of motion. No swelling, no pain. Oh thank God. He wants to keep her on the Methotrexate for now. Bummer. And sends her back to the eye doctor for a follow up there. Apparently because of the results of some of her blood work she is more likely to develop eye issues. Okay....I schedule an appointment thinking no big. Uh uh. We get there and her optometrist is spending ALOT of time on her left eye. Something isn't right. I feel it. Yup. Her left eye is loaded with inflammatory cells. But NONE in her right eye. The doctor says this is odd. I don't know. I'm still new at this. I learn later that night on my own by scouring the internet that she now has a condition called uveitis. Aye, aye, aye........more? God....she is ONLY four! this isn't right! I know I am not alone but it sure feels that way. So she is started on eye drops. Prednisolone every four hours just in the left eye and Hematropine in both eyes 2x daily. Oh boy....this is fun. She kicks, squirms and screams. Joyous. One week follow up. Slight decrease in cells. She can stop the Hematropine. Yay! this is the only one that she fought me on. Predisolone now every six hours. Follow up this Friday on the 14th. Good news please. PLEASE good news only. So that is where we are at now. Not sure where Jennas Journey will take us but I am sure it will be a wild ride!

Monday, October 18, 2010

I Pray That Was It

So, as some of you know Jenna has been in pain for a few weeks now. If you are just now joining the party, WELCOME!, and you can go here and here to catch up on the latest :) Okay so last night was a "double Shot night" as seemingly all of us JRA families like to call it. Also, side note: Sunday seems to be just about every one's shot night. Okay, SO, last night Bean got her weekly MTX as well ass her bi-weekly Humira. I prayed and prayed and PRAYED some more. Please Lord, PLEASE let this be it. Please just let it be that she is in need of another dose. She was getting so progressively worse each day that I didn't think she would make it to school this week. By days end on Friday, Saturday and Sunday she couldn't walk. Daddy carried her, or she crawled, or she hopped on her one good foot. Despite the fact that it hurt her legs to do so. This morning she really struggled to get up and moving. She asked to please stay home and rest. It broke my heart but I told her to please go and try. If you can't make it then they can call me and I'll come get you. It was getting close to lunch time and we hadn't heard anything. So I suggested to Larry that we go surprise her with lunch. That way we'll know for certain. soon as she saw us, she bolted into a run, leaped up and wrapped herself around me monkey style!!! Feeling better Cupcake? She giggled and said YUP! WOW. What a difference. She seems back to normal now. Well....HER normal. Nothing is ever "normal" for her. But, for right now, she seems good! We go see Dr. Sagerman on the 25th. Very eager to get his take on all the goings on. AND to talk to him about CARRA and getting on the patient registry!! Is YOUR pediatric Rheum on it? Find out!!

Saturday, October 16, 2010

Sophia Rothman/Juvenile Arthritis on Fox News

Another "face of arthritis", another tiny, brave soldier. I love how she whispers arthritis. Precious.

Too Much To Hope For

So at Bean's last appointment with Dr. Sagerman in July he discussed possibly scaling back on meds when we came back in three months. That brings us to now. She sees him again October 25th. We had so much hope. We thought that we would never get here. I guess it was too much to hope for. She has been having pain for about three or four weeks now and it seems to be getting worse instead of better. She has been needing to stand at her desk at school because sitting for too long is painful. She prefers to stand up at home to color or play on the computer. I noticed this week that her left foot was turned in when she walks. Then a couple days later a limp was added to that. It has also been painful for her to have her backpack on her shoulders. It only holds a folder and a library book. Last night she was so tired and in so much pain that she had Daddy rub her magic lotion on her legs and feet and carry her up to bed. Something that he hasn't had to do in MONTHS. She also wouldn't set her left foot on the floor when she stood last night. She said it hurt her leg too much. We are back to 2-3 doses of Motrin a day. We haven't touched it in so long. This morning after a good nights sleep she seems better. But, her feet still hurt. And after coloring a picture for a bit, one of her most FAVORITE activities, she had to stop because it hurt her hands. Urgh. She has to be in a LOT of pain in order to speak up AND ask for medicine. I just wish I knew. I wish I knew what her little body feels. So at any rate, I'm guessing that this means no weaning for now. Very eager for the 25th to get here to see what he finds. See what he thinks.

Friday, October 15, 2010

Another Tiny, Brave Soldier

I just read this story on the Friends of CARRA site and simply HAD to share it with you. Proof yet again this these kids don't "JUST have arthritis" as so many, many people seem to think. "Well it's not like she has cancer! Be thankful!" Right Moms and Dads? How many times has this or something similar been said to you? on.... THIS is why I won't stop posting about asking for donations from my Facebook friends and family. A cure HAS to be found for these children.

A Story About the Princess

On any given summer day little girls fly kites in a grass field with their dads and play games in the swimming pool with friends smiling and laughing. At night a little girl can dream of being a princess in a fairytale story, being the President of the United States, becoming a doctor or teacher, or maybe just dream of the next day when she can run and play all day in the sun once again.

Christiana Maria Powery was born on February, 9 1995 into a loving family with a strong connection to God. This new gift of life was on her way heading into a lifetime of adventures. Where she would end up only God really knew. Summer days never last, dreams end with open eyes, and all the stories of fairytale princesses come to an end someday.

It is something that a family never forgets; it creeps so softly into a young life for such a major change. It is the day that we first feel the arthritis. As I write this I think about thirty years ago when it happened to me. All those I know who live with arthritis will tell you the same thing: that moment in time is frozen, when something simple changed it all.

For Christiana, it was the day that she and her sister Serena walked playfully across the supermarket holding hands, swinging back and forth. Her wrist was tendered that day, not too uncommon for a child who played as much sports as she did. However, there was something about that day that stands out as the day it all began.

The pain in Christiana’s wrist continued for a couple of weeks. Because it was most likely a sprain, the wrist was put in a cast as a precaution. Soon after that, the Powery family was referred to Stanford and x-rays of her wrist led to a diagnosis of Juvenile Rheumatoid Arthritis.

MedlinePlus writes that JRA is the most common form of arthritis in children. It may be a mild condition that causes few problems over time, but it can be much more persistent and cause joint and tissue damage in other children. JRA can produce serious complications in more severe cases.

Arthritis is best described by four major changes in the joints that may develop. The most common features of JRA are: joint inflammation, joint contracture (stiff, bent joint), joint damage and/or alteration or change in growth. Other symptoms include joint stiffness following rest or decreased activity level (also referred to morning stiffness or gelling), and weakness in muscles and other soft tissues around involved joints. However, because JRA affects each child differently, your child may not experience all of these changes. Children also vary in the degree to which they are affected by any particular symptom.

Arthritis at seven years old, how could it be? That is the thing that only happens to Grandpas and Grandmas when they get really old. Why did it happen to the healthy, athletic, popular and kindhearted little girl? As with 90% of the people I know who get arthritis at a young age, it was not hereditary as far back as the Powery family could tell. It just happens.

When Christiana was eight and a half something wonderful happened: after a year of medications and shots came a remission of the disease. Prayers were answered, and life once again showed a bright future full of hope for our little princess. There was then a great year and a half; a family went on having fun with many adventures and exciting moments. Christiana was able to do her cartwheels in gymnastics, play soccer and basketball with her friends, and laughed as all kids should.

Two weeks before Christiana turned ten years old, the remission seemed to end. She began to lose her stamina and started to favor her wrist. Soon Christiana was losing weight and missing more and more baskets during her basketball games. The warning flag was raised, and it was back to the Rheumatologist, but this time something was different. The pain of arthritis was there, but there were inflamed veins around Christiana’s eyes, and her blood tests were not typical with only having JRA. Christiana Maria now had Juvenile Dermatomyositis (JDMS).

According to WebMD, Dermatomyositis is a progressive connective tissue disorder characterized by inflammatory and degenerative changes of the muscles and skin. Associated symptoms and physical findings may vary widely from case to case. Muscle abnormalities may begin with aches and weakness of the muscles of the trunk, upper arms, hips, and thighs (proximal muscles). Muscles may be stiff, sore, and tender and, eventually, show signs of degeneration (atrophy). Affected individuals may experience difficulty in performing certain functions, such as raising their arms and/or climbing stairs. In addition, affected individuals may experience speech and swallowing difficulties.

The symptoms of childhood Dermatomyositis are similar to those associated with the adult form of the disorder. However, onset is usually more sudden. In addition, abnormal accumulations of calcium deposits (calcifications) in muscle and skin tissues, as well as involvement of the digestive (gastrointestinal [GI]) tract are more common in the childhood form of Dermatomyositis.

In the weeks that followed, Christiana lost strength in her arms and legs to the point of not being able to raise her arms or walk. At the beginning of September 2005, Christiana was admitted to Lucile Packard Children’s Hospital at Stanford (LPCH) and over the following three months she fought battles that few will ever know. During the ups and downs, between failing kidneys, lowering platelets, seizures and blood transfusions, the Powery family was there in a room with their angel surrounded by cards, flowers, balloons, and stuffed animals from dear friends, and a signed soccer ball from her old teammates. She was a strong girl with an even stronger connection with God, and on December 16, 2005 Christiana’s parents wrote this letter to all those who loved her:

God has loaned us a beautiful child called Christiana and He has decided to take her back home with Him. Christiana joined the Lord on Wednesday, December 14th. Her little body fought as hard as it could but it could no longer keep up after some unexpected complications. God needed another angel during His season, Christmas. Christiana was the special child He chose. We prayed for the miracle of healing but God decided to heal her in heaven instead. When we pray for God's will to be done, we must understand that His will is not always our desire. We have to be strong enough to accept it and understand that His plans are always good for us. Her mission here is done. She was sent here to share His love with others (in her school, the soccer field, the basketball courts, her neighborhood, her church and in the hospital with the doctors and nurses).

We want to thank you all for your continued prayers, thoughts, food, gifts, visits and tremendous love. We know that right now she is dancing for joy and will patiently wait for all of us to join her in heaven.

I first met Christiana’s dad ten months ago at the annual Friends of CARRA Board meeting. That first evening Dwight and I were soon speaking of the latest treatments of JRA and how much has changed in the thirty years since I was diagnosed with JRA at the age of ten. I always enjoy meeting the parents who have kids with JRA. I tell them that the road of life is going to be harder for their kids, but it does not make it any less of a life. Have them face the world as strong as they can; tough words coming from my strong multi-fused and replaced joint body. That evening, I did not know anything about Christiana or what the Powery’s have faced over the last five years. I have thought I have seen it all when it comes to JRA, as it turns out I knew so little.

I did not know Christiana, but after writing about her and speaking to her loving parents over the last year, my heart is very sad and heavy and I feel it is a great loss in my life.

Christiana’s mom, Maria, has dedicated a lot of her time helping kids with various disabilities in memory of her daughter. The family is also raising money for a JDMS cure. I look at Dwight and Maria and see what it really is to be strong. Strength is not measured in how many years you have had arthritis, it is how much you care, help and love others.

This past September, Dwight and Evelyn, Christiana’s oldest sister, participated in an eight day bike tour from San Francisco to Los Angeles. It was called the California Coast Classic and was organized by the Arthritis Foundation. There were hundreds of participants, but their team of four included two of Christiana’s doctors from LPCH. Together they raised approximately $15,000 for JRA research.

This past October, the Powery’s also had a 3v3 Basketball Tournament in memory of Christiana to raise money for Friends of CARRA. Hundreds of people participated in the event, and they raised over $7,000 for research and a cure for JRA and JDMS. Plans are getting in order for next year’s 3v3 event very soon!

What Dwight and Maria are doing today will insure that many more princesses will live happily ever after.

For more information on the life of Christiana Maria and upcoming events, visit
To find out ways that you and your company can help find a cure for JDMS and support Friends of CARRA, visit our website at Kevin Purcell

Wednesday, October 13, 2010

A Tiny Brave Soldier

Tonight I am not blogging about my Bean, awareness, facts, education, none of that. Tonight we have a tiny soldier in this battle of rheumatic diseases that needs our support through prayer. I don't want to get into a whole lot of details on Emily's story because I don't want to get it wrong. So I will allow you to go read her story yourself. Emily has been admitted to the hospital tonight. I ask all of my readers to please pray for answers and healing for Emily. Pray that she is in the right place now for this. Prayer DOES work! I have seen it myself in action! Thank you friends.

Tuesday, October 12, 2010

Anna's Speech.wmv

Oh God bless her!! What a brave little peanut!

What is CARRA?

SO very grateful for foundations and organizations like this!! Angels sent by God to protect and heal our children. Note please, when they highlight the states that do not have practicing Pediatric Rheumatologists that Maine is lit up. THIS is why we moved.

Monday, October 11, 2010

world arthritis day 2010

In observance of World Arthritis Day, the Arthritis Foundation is calling on all Americans to "Do Blue" on Tuesday, October 12. By dressing head to toe in blue--from blue do's to blue shoes--America joins in the celebration to make it truly a worldwide effort. Even some of our national landmarks and monuments will be dressed in blue (lights, that is).

Our “Do Blue” campaign aims at raising awareness of arthritis in all its forms and urging the nation and individuals to take action to reduce the impact of our most common cause of disability.

The Arthritis Foundation is coordinating several exciting events to celebrate here in the United States:


Help us "walk" around the world by October 31 to raise awareness that moving is the best medicine to fight arthritis pain.

Our goal is to walk 24,906 miles collectively--the circumference of the world. Watch our combined mileage grow on a graph of people circling the globe. You can even post a photo of yourself in our gallery of participants. Go ahead! Make your mark on the world!

Visit to learn more.


An online, real-time, question-and-answer event, and you’re invited!

Participate in a direct “conversation” with arthritis experts Dr. Patience White and Dr. Arthur Weinstein. Get answers to all your questions about managing and treating osteoarthritis.

Join the party at 2:00 pm EST, October 12, with hash tag #arthritisday.


In observance of World Arthritis Day, we're going to "Do Blue" across America on Tuesday, October 12. Everything from blue hairdo's to blue shoes. Even landmark buildings around the nation will light up blue in the evening. Don't miss out on the fun!

Highlights of the festivity include ringing the NASDAQ closing bell and illuminating Niagara Falls. for a complete list of landmarks observing World Arthritis Day.


Form a Jingle Bell Run/Walk team to raise awareness and funds to fight arthritis. Be among the first 100 people to sign up on October 12 and receive a free gift!

It’s a fun, festive way to kick off the holidays with family, friends, and coworkers. Tie jingle bells on your shoelaces, wear holiday-themed garb, and run or walk the 5 kilometer route.

Register at


The Arthritis Foundation is delivering special water bottles to all members of Congress on October 12.

They're "special” because they’re tagged with information about the physical challenges and burdens of various forms of arthritis—not just valuable facts, but recommendations for crafting new legislation on behalf of people with arthritis at school and in the work place.


Click here to find out .

Sunday, October 10, 2010

This Is Why I blog

Last night as I lay in bed, trying desperately to turn my brain off (put the jokes AWAY people!) and fall asleep, I couldn't stop thinking about my blog. Mine and all of the others that I have found along this journey. I couldn't stop thinking of how so grateful I am to have this whole universe of fellow blogging JRA Moms & Dads. To know that we are not alone in this war that rages on in our children is such a comfort. Outside of our blogs, many of us have found each other on Facebook. Just another way for us all to stay in touch and be a part of each others lives. For this I am so thankful. I know that I could not do this on my own.
Nearly two and a half years ago now, when Bean was first diagnosed, I was so confused. I knew of arthritis. Many people in my family have it. I had a childhood friend that had JA. But I had no clue what it all meant. I didn't understand any of the terms that these doctors were using. I didn't understand what my child was going through. I didn't know how to cope. So I of course googled JRA. I didn't come up with much. But I did come across a blog written by another JRA Mom. Her blog was filled with facts about the disease in general as well as personal facts about her sons battle and her part in it as his Mom. I felt this huge relief! There are others out there going through the SAME thing! So I sent her an email, asked her some questions, she was GREAT. Since then we have become friends through the internet. Man I love the internet. We even got to meet face to face one time. When we lived in Maine and Bean was seeing Dr. Foster for her Uveitis, this Mom's son had an appointment the same day! You can read about that appointment and see some photos here. She has been such a tremendous help and comfort to me right from the start of this journey. She continues to connect me with other families as well as educate me.
So this is why I blog. This is why all of my Facebook and Twitter friends are seeing my blog constantly posted and plastered everywhere. This is why I am constantly asking you to share the link to my blog. It isn't so that everyone can read about my daughter for MY benefit. It's in the hopes that I can reach even just ONE family that feels alone. Or in my feeble attempts, maybe I can help educate someone about JRA and Uveitis and all the junk that goes along with it.

Saturday, October 9, 2010

What Uveitis Looks Like

I found this to be TRULY fascinating! I had no clue what it actually looked like until now. You can clearly see the difference between "flare" and "cells".

The Face of Arthritis

"Well she doesn't LOOK sick.".....Yeah, if I only had a penny for every time I've heard that. Or how about this one..." SHE has arthritis? Are you sure??" Nah, I'm actually not sure. We just like injecting her with poison. I have also been accused of making it up. Because you can make this stuff up right? I can CREATE this crap in my child's body. Sorry folks. Mama Bear is having BAD day. It annoys me, angers me, FRUSTRATES the HECK outta me and today it all seems to be piling up on me for whatever reason. Just because you can't see the arthritis, OR the Uveitis, doesn't mean it's not there!! What in the world is it that people are expecting to see anyway? Thankfully she doesn't have any outward signs. No walker, cane, heaven forbid a wheelchair. Currently she has no visible swelling. Does that mean she isn't suffering?? Does that mean she doesn't feel pain that YOU can't SEE?? Does that mean that she doesn't have to adjust to what the world is doing to make her more comfortable? NO. NO. And NO. The really sad thing? Kids like my Bean have been in pain so long that they don't even know any different. I recently heard in a video that I watched online, a JRA Mom say, that when she was in labor, it was the worst pain she had ever felt. But at least she knew that it would end. The pain would be over. These JRA kids have no end in sight. They can't look forward to a day that their pain will end. And typically it only gets worse as they get older.
We went to the park today so that the kids could ride their scooters. They have been looking forward to this for days now. Well, guess what? It was a disaster. I thought if anything it may hurt Bean's knees or her hips. It hurt her HANDS. *sigh* I kept trying to get her to maybe hold on with a looser grip, take breaks, it just kept hurting her worse. And don't think that this just affects her. Bub was having a great time zipping around on his scooter. But then we had to leave because Bean was in pain. We tried just walking while Bub rode his scooter but something happened that hadn't happened in a LONG time. Her legs gave out and she just collapsed. I tried my hardest to hide my horror and shock. Not sure how well I did, but I did say that it was time to go. I gave her a nice warm tub, and then gently lotioned her, and now she seems fine. But Mama is far from fine today. I'm just angry. Angry at the disease, angry at ignorance, and yes angry at families that have perfectly healthy children (okay maybe not angry with but certainly jealous of). That may not sound fair. That may not sound right. But today I just want to be honest. *sigh* Church tomorrow. I'm in need of some good church.