Walk to Cure Arthritis - Back in the typically hot Texas summer of 2011, at swim camp at UT, our daughter, Erin, was to begin a whirlwind journey that no child should ever have to contend with. She was fresh out of eighth grade and had her sights set on high school, making swim team and beginning an exciting and a slightly overwhelming life as a Lake Travis High student. Its start was fraught with sudden isolated pain in her knee and in her shoulder. As school started, it included more joints and took away her mobility, all the physical gains she made over the spring and summer, and, yes, stubborn independence. She could not even swim. She was so upset needing me or her Dad, Andy, to carry her from room to room, assisting her just to get some sleep in a youthful body wracked with pain and emanating heat. Unyielding, unmoving, and just fire poker hot. Frequent medical consults, ER visits, medications could not speed up the long awaited Rheumatology visit. It took tremendous desperation and the strongest little pediatrician in Texas to convince the specialist that this girl needed her healing to begin immediately before her illness weakened her to a shell of herself. Dr. Ramirez kicked up the emergency appointment to two weeks earlier to the following day. As the journey went, yes, she was diagnosed with pediatric idiopathic arthritis, polyarticular. It was rheumatoid arthritis in bold form, going after multiple joints, no known cause, in a child sixteen years of age or younger. Another wordy description for complete pain. Over the course of more than two years, she got onto the prescribed course of biologics and methotrexate, a lions share of injections into multiple joints to save them (I lost count at thirty three, as it became too routine for us). She had one reasonably sound school year in her sophomore year, having less local injections, but more targeted therapies on joints that paid a price with their overuse (TMJ, knee). We started a scary journey to potential surgeries on joints. Just this past winter, Her biologics began to fail and mini-flares slapped her with the hard reality of moderate to severe arthritis. This winter came a bridge of oral steroids, which along with oral inflammatories, which is believed to have caused ulcers, gastritis and a horrible infection. She had a big run of ER visits, urgent care support, and a critical hospital stay to invite new pediatric specialists into her care. A GI doc, infectious disease specialist and our rheumatologist had to band together, delay her medications to heal her insides and get her onto a new medication to stop the march of now labeled Rheumatoid Arthritis. She has a pain management specialist overseeing her case. Her school absences extended into a homebound case this time around. Erin today is finally on new RA medication, but we await, hoping she doesnt react badly or get other issues in this process. As her parents, there is hope. There is prayer. There is anguish. What is missing is the above abbreviated piece is deliberate. It is a scramble to give you some content. Compressed and massive. We have to highlight the critical development of a young teen who has boldly grown into a tremendous young woman. I cannot express too clearly how she has made this journey and became a truly powerful person. She loves children so much, all her times in recovery she matured into someone in severe pain to someone watching, hoping, praying that the children also in the room would heal well. Her faith holds strong. Shes matured enough to bid goodbye to toxic people and hang on dearly to good friends and help those who need it. Although she probably dreads her makeup work, she continues to look to a future, hopefully in medicine or nonprofits. Erins empathy will no doubt serve others well. Shes overcome and continues to contend with game-changers, yet still sees humor in the goofiest things. She has bonded deeply with her siblings and family. She has all the normal trappings of a soon to be 17 year old who wants to head to a concert, movie or a mall somewhere. She has all the emotional stresses other kids do, but it kicks up tenfold with the physical trauma. Erin knows she will get through it, but its all part of her journey. This long, unending journey includes raising money for Walk for Arthritis. Lets cure this beast that takes away so much. Do it for Erin. Do it for someone else you know. Do it for yourself. Pray, hope, contribute, participate or simply share. Yes, it will make a difference. We are eternally grateful for our blessings, our children, family and friends. Each experience has brought us up to another level of faith. We are grateful to each of you. Thank you. TEAM SPOONS PAGE : walktocurearthritisaustin.kintera.org/faf/search/searchTeamPart.asp?ievent=1095343&lis=1&kntae1095343=AD9CDB10333F48AD82686AD85178291E&team=5918267&tlteam=0
Posted on: Sun, 06 Apr 2014 18:30:55 +0000
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