What can I say?

I am after all only human. Therefore, I make mistakes. Sometimes, they are really big ones. I have some doozies in my dossier. One of them, I am now ready to admit, *sigh* was switching Bean from Duke Children's to Brenner Children's. Going back to this post, which I just did, this is when I had decided that Bean and Mommy had had enough of the two hour drive to Durham. I just couldn't do it anymore. I felt that there had to be other options that were just as good. For the record, I gave hubs the opportunity to say, "I told you so" the other day. He didn't which only made me feel worse. So December '09 was her last trip to the Duke rheums and February '10 her last trip to Duke Eye. All this time I have felt okay with her care at Brenner and at Cabbarus Eye. BUT, over the last couple of months she has been having some issues (pain, fatigue, etc) that I don't feel are getting addressed, there is a HUGE breakdown in communication that is becoming ever more apparent. Also when I did this post I realized that she isn't seeing a board certified rheum and from looking at his credentials I'm not even sure if he is trained? The more and more I think and process it all through, I'm not happy with her care. CRAP. That means 1) I need to admit I was wrong and I hate doing that. 2) We need to start making that drive again. CRAP. When I mentioned it to Bean she wasn't impressed :( Just to be sure of everything and get a professional opinion I made an appointment with her regular pediatrician. Now this woman I love and trust 100%. Yesterday we went in to see her. We talked about Beans pain, fatigue and our concerns over what to do now about her specialists. She agrees that the pain and fatigue are not normal and not okay. Also not uncommon for a specialist of any kind to miss it. If it isn't on their own radar under the umbrella of what they treat and look for then they likely won't catch it. For instance, her routine labs, they're routine labs for a rheumatology patient. They won't necessarily help diagnose another possible issue. So she is running what she calls her "fatigue labs". Did you know that it isn't just the AMOUNT of red cells that count but apparently their size too? I found that very interesting. Don't ask me for anymore details. I can't retain more than one line on any given topic, sorry. So she is going to check all kinds of "other stuff" if you will. I am really hoping she finds SOMETHING. If there is nothing....then what?? Bean scared the crap out of me after her labs by the way. When we got back to the waiting room she started freaking out and crying saying she couldn't see because everything was blurry. I told her she likely got up too fast after the blood draw, not uncommon, you'll be okay. She didn't look so good so Daddy (thank goodness he came) carried her out to the truck and got her into her seat. She was ZONED OUT the whole way back to Mooresville (about 20 min). That isn't normal is it?? So anyway, we also talked to her about our concerns with Brenner Children's (not so much Cabarrus Eye) and what does she think about all of it?She said as both a Mother and a physician, NONE of it sits right with her. That being said she also HATES driving and saw where I was coming from. But, the lack of communication (I can't even get his danged nurse on the phone!), the fact that he isn't board certified and last she knew was only a general practitioner, the docs at Duke are known for their training, are board certified AND associated with CARRA, and that general Mom gut feeling has us all thinking that it's time to go back to Duke. She said it shouldn't be an issue to get her back in because she never really left. She also said if there IS any issue, be it insurance or otherwise, to tell them to just call her and she'll take care of it. The kids drove me crazy yesterday so I didn't get to call. I called first thing this morning. It took some juggling and calling back and forth from eye to rheum but we now have appointments on March 9th 2011 at Duke Children's Rheumatology and at Duke Eye. I actually never managed to get her appointments coordinated like this before (maybe once) and that was part of the problem. But, now I know it just takes calling back and forth and if it's a pain for them to change appointments around, oh well tough noogies, figure out a better system folks. So that's where we stand, we are waiting on lab results from yesterday, she goes back to Duke in 3 months, she has appointments at Cabarrus Eye and Brenner before then, not sure if I'll take her or not. I guess we'll play it by ear.

WOW, sorry this got so long winded! I hope you are all having a blessed holiday season.

Isaiah 41:10 (New International Version, ©2010)

¹⁰ So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

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? Yeah...read 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 www.alsotouch.com. 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 www.carragroup.org. Kevin Purcell

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.