tag:blogger.com,1999:blog-182383822024-03-05T03:44:01.573-05:00AnnasJRAI keep this blog in part to easily update family, friends, and other JA parents (and any other interested persons!) on how Anna is doing on her journey with Juvenile Arthritis.
Since Anna was first diagnosed in 1999, the terminology has changed. I believe that now children are diagnosed with Juvenile Arthritis, or Juvenile Iodiopathic Arthritis, et. al. However, I created this blog a long time ago, when people referred the disease as Juvenile Rheumatoid Arthritis. Hence the "JRA." Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.comBlogger158125tag:blogger.com,1999:blog-18238382.post-71470323840653312572019-07-09T22:34:00.000-04:002019-07-09T22:34:01.987-04:00Transitions in the Journey. . . . .<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPEzlBCfzvUcP3NbNDfYMezAgeaUoL68y8ZtS1MycQgWr1fzuBaN3njSgR0xKV-SCNmsdyiBT6gHZTco493nYibNTefHeOKLJMQMxVIby-lIL7LeQ1JxwHYXru9b1iW4-9FkWkA/s1600/last+blog+post+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="614" data-original-width="1024" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPEzlBCfzvUcP3NbNDfYMezAgeaUoL68y8ZtS1MycQgWr1fzuBaN3njSgR0xKV-SCNmsdyiBT6gHZTco493nYibNTefHeOKLJMQMxVIby-lIL7LeQ1JxwHYXru9b1iW4-9FkWkA/s400/last+blog+post+2.jpg" width="400" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I reviewed my blog today, and I saw that it's been 18 months since I last posted any updates. And this will likely be one of my last posts/updates. Much has happened in the past year and a half. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizLm_CiMd5sA82XwZCX0LZCoVqgmPfjrHRjF1RhPLmRbU2S_KHOF_D7TSXRwYlcxCYG7ZCB9iQXrwm7Sia7yDvfaRJaVr2jeGsIomxWsrwAmcE_SwD1v9xsD6f3aeUS6y5HNy8aQ/s1600/48412223_10155719794296384_5390814453384085504_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="862" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizLm_CiMd5sA82XwZCX0LZCoVqgmPfjrHRjF1RhPLmRbU2S_KHOF_D7TSXRwYlcxCYG7ZCB9iQXrwm7Sia7yDvfaRJaVr2jeGsIomxWsrwAmcE_SwD1v9xsD6f3aeUS6y5HNy8aQ/s200/48412223_10155719794296384_5390814453384085504_n.jpg" width="179" /></a><span style="font-family: Trebuchet MS, sans-serif;">Anna had cataract surgery in December 2018. The surgery went well. the photo to the left is her prepping for the surgery---she prefers to put her own eye drops in!</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">She did develop a film over her eye which needed to be removed. (Her cornea specialist had told her this could happen in a few days, weeks, or years</span><span style="font-family: "Trebuchet MS", sans-serif;">, and he could easily remove it.) She saw him about two weeks ago, and he released her from his care (with the knowledge that she can call if she needs him). She really liked him! He told her that if she misses him, she can come say 'hello' when she sees her retina specialist.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">These past eighteen months have also been a real shift into a different gear for this journey--or should I say, a new path for Anna. She has continued to grow as a young adult and has increasingly taken over more and more decisions. I don't even know about some of her thoughts and decisions sometimes (and I realize that's normal---I was the same way as a 21-year-old.) I've been reluctant to share some of this in a public blog, knowing that everyone will have their opinions. I know many JA parents read this, and this may be alarming at first---but the truth is, many of you parents may experience this in the future, too, as your young adults take over their own care. So maybe you need to hear this.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Anna stopped taking her medications (except for her eye drops---as far as I know) over a year ago. If you have read my blog, you know that the biologics are no longer an option for her, as they caused medication-induced lupus. (All of those Lupus symptoms went away when she stopped the Remicade.) Her rheumatologist was trying a few other options (Plaquenil, Mobic, along with Methotrexate). Anna had been on Methotrexate on and off (mostly on) for well over ten years (the years start to run together after awhile, and I can't even remember!). I don't know all that she was experiencing, but she was reading up on all of the side effects, and realized that besides the panic attacks that came with increasing frequency and duration when she even thought about taking Methotrexate (and even getting ready to go to the college's health service building to have someone else give her a shot), she was dealing with depression and a concerning change in her thought patterns. She is convinced that the Methotrexate was causing it. She began seeing a counselor (and still sees one now).</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">I urged Anna to tell her doctors about stopping her medications, and she wrote to her pediatric rheumatologist first to "bend his ear" about it (she probably felt safe with him, after being under his care for so long---he knew her before she was 2 years old.) He told her that the rheumatologists are never shocked or surprised to hear that their patients have stopped taking certain medications, but she also needed to be honest with her adult rheumatologist and retina specialist.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The good (I should say GREAT) news is that Anna's joint have not been a problem. (After what she experienced two years ago when she abruptly stopped Remicade, this is a miracle!---some have been praying for this for a long time.) Someone asked her the other day how her eyes are doing, and she said they are doing well. The left eye flared a bit (uveitis and macular edema, as well) after the cataract surgery, but she was told that is normal. She has received good reports at the most recent appointments with her eye specialists.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihGUhMJ4EKp7N8iXkrQKRBhz8E0uPytT2Gtis27shCQedRYr09ZYahAMj1GR3qfrY9JSs9J1di3hVtYR6Qs6YsAjI1x4wwvPHDtz0imOwfwdxP63RFSJzuZdCQzWT8JRx6CM6Q5g/s1600/ae227cd4c763fde6adc5cb63a6fc2f4b.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="736" data-original-width="736" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihGUhMJ4EKp7N8iXkrQKRBhz8E0uPytT2Gtis27shCQedRYr09ZYahAMj1GR3qfrY9JSs9J1di3hVtYR6Qs6YsAjI1x4wwvPHDtz0imOwfwdxP63RFSJzuZdCQzWT8JRx6CM6Q5g/s200/ae227cd4c763fde6adc5cb63a6fc2f4b.jpg" width="200" /></a><span style="font-family: "Trebuchet MS", sans-serif;">After almost two decades of me (Anna's mom) reading and researching and listening to doctors and trying to understand this disease (Juvenile Arthritis and uveitis) and how medications help and what could happen if medications aren't taken, let me tell you I had weeks (if not months) of adjusting my own thoughts! I've often thought of the Bible verse that talks about "praying without ceasing," and I'm thinking that every mother who knows God and understands the power of prayer must know that praying without ceasing is everyday life! No problem, there! Anna has two older siblings who have already left our nest, and I think I was thinking the third child transitioning to adulthood would be easier! Guess not. I have been learning SO MUCH about surrendering my children to the God who loves them more than even I do and wants to use them so that others may know who He is. He promises that He works all things for good for those who love Him and are called according to His purposes, so I need to trust that. I'm learning more and more about keeping my mouth shut and my thoughts to myself unless I'm asked, because how many 21-year-olds want to hear their mom's opinions!? Anna tells me that many of my opinions and philosophies are already ingrained in her head. And yet she is her own person with opinions that may not be mine. And we need to allow our adult children to make their choices---whether they seem wise or not in our minds. I know Anna belongs to God, and I know she loves Him and wants to follow Him. So I need to trust her to go in that direction (and continue to pray for her, knowing that I have no control over her life.)</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">So after 20 years (Anna was diagnosed in July of 1999), my role in Anna's JA Journey has come to an end. I seriously doubt that Anna will blog about her journey from here, although she is welcome to! But she is busy! She has begun a full-time job, and she is taking a non-traditional course of study at a Bible college about an hour away from here. She continues to be a co-youth leader at our church. Her social life has gotten a bit busier than it had been.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">After almost 20 years of multiple doctors' appointments and keeping up on the latest advances in treatments and worrying about signs and symptoms of arthritis and uveitis, I no longer need to do that. In keeping with the analogy of a journey, it's like I've come to a fork in the road, am able to put down my backpack/burden of JA and uveitis stuff/knowledge, and allow Anna to continue on, while I look around me at the landscape ahead and decide which direction to go next. Before my mom passed away this past January, I was telling her that I now have all this time I didn't have before, and I was figuring out what I need to do next. She said, "Maybe you need to REST." So I have spent a lot of the last two years intentionally slowing down. And still praying about what's next. (And at this moment in time, "what's next" is spending more time with extended family, as we continue to grieve the passing of my mom and several months later, one of her brothers---don't take your family for granted! Love them! Spend time with them!)</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">So thank you to all my family and friends who have faithfully read our updates over the years, and to those of you who have prayed for Anna and for us so faithfully. (We can still use your prayers!). I still belong to some of the Juvenile Arthritis and Uveitis Facebook groups, although I don't always feel that I have much to contribute. The JA and Uveitis moms I've become friends with over the past two decades have at times been a lifeline and a huge support for us and some remain friends to this day. I encourage anyone who is dealing with this or anything else to find a group of friends who can relate and understand what you're going through.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">And if you find that your teenager or young adult is struggling, PLEASE prayerfully consider counseling for them. Don't hesitate to talk to their doctors about it. Sometimes I wonder if we should have pursued counseling earlier. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">One thing I KNOW to be true for us---God has been so faithful. His love has never changed. During the toughest parts of this journey have been times when we have felt closest to Him. He truly has been and will continue to be our strength in all of life's journey.</span><br />
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Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com3tag:blogger.com,1999:blog-18238382.post-84347172666441109162018-01-07T17:37:00.000-05:002018-01-07T17:37:04.662-05:00A Little Rough Patch in the Journey<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">As Anna continues to hold the reins of control in her medical journey, I am usually now just observing (and praying!). And she still asks for my advice sometimes---like which doctor should she call---on a Sunday morning, should she call Hershey or just go to Urgent Care? When the issue in question is the eye, my immediate response is "call Hershey." Anna woke up this morning thinking she had pink eye. She did call the Eye Center at Hershey, as the on-call ophthalmologist wanted to see her as soon as she could get there.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">She may or may not have pink eye (conjunctivitis). In fact, the doctor didn't give her any antibiotics. But he did find some inflammation in the front of the eye (the right eye this time---not the left eye, which has the most complications). He said that it's very possible the inflammation was causing the itchiness and irritability and redness. So he prescribed some increased Pred Forte drops for the next two days and an appointment to see her retina specialist on Tuesday morning. Anna has been dealing with a cold virus, which has likely exacerbated her eye issues.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">While Anna was driving herself to Hershey and taking care of her medical needs, I was with my small group at church, going over some very wise words from James MacDonald in his "Lord, Change My Attitude" study. MacDonald was talking about<b> </b><i><b>"a specific combination of circumstances that might be stretching us or about something He's allowed to keep us close and humble . . . instead of disrespecting God with [our] complaints, see this as your best opportunity to draw near to Him and let Him provide what you need for the situation."</b> </i> So that's the perspective we will take with this bumpy stretch of road in Anna's JA Journey. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have come to the point where I realize that we have little control over Anna's uveitis issues. We're doing the best we can by partnering with doctors whom we respect and trust. The rest is in God's hands. There are so many little things to be thankful for----that we live within a relatively short distance to the medical center, that as soon as Anna calls and explains who she is, who her doctor is, and her present situation, they say, "Come right now," even on a cold, Sunday morning when the doctor also has to drive to the Eye Center just to see her. We can be thankful that she drove herself home with no problem, even though her eyes had been dilated (she didn't tell me that until she was safely home---she knows I don't like her driving with dilated eyes). We can be thankful that she will see her retina specialist in two days, instead of waiting until January 24th (her previously scheduled appointment). We are very thankful that this is </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">all happening before she heads back to college this week. (When she started having some cold symptoms, I told her that if she was going to get sick, at least it's happening about a week before classes begin again, and before she goes back to dorm living!)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Some of you who read this are believers and pray for Anna. Thank you so much! The fervent prayers of the righteous are powerful and effective. In these combination of circumstances, God has indeed provided for our needs in so many ways. I never want to take that for granted. </span>Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-61843471070885868672017-10-15T17:08:00.000-04:002017-10-15T17:08:41.947-04:00"Taste and See that the Lord is Good": Living Life to the Fullest on the JA Journey<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">So much has happened in the six weeks since my last post. Anna visited the retina specialist this week, expecting the tests on her left eye to show that the macular edema was even worse than July. The visual acuity in that eye certainly isn't good, and probably worse than it has been in awhile. (Anna has never worn glasses, her vision usually being 20/20 in both eyes when there is no inflammation or swelling.) I heard Anna having an animated conversation with the OCT technician, and later discovered that they found the swelling in the back of the eye (macular edema) to be gone! Resolved! Totally unexpected for us, so we were amazed (and thanking the Lord!).</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We were left with the puzzle of why Anna cannot see very well with the left eye. The issue (in part or in totality) is a cataract which has been forming. Because Anna's eyes were completely dilated, it was useless to test her vision with a corrective lens (the doctor tried, but Anna just couldn't see well). That test will have to wait until another time. I was thinking how odd it seemed to be leaving the doctor's office feeling relieved and smiling about a cataract forming on the eye of a 20-year-old. But we considered this to be much better news than the worsening of macular edema. A cataract can be removed (although the doctor does not want to do anything about it right now since Anna is in the middle of a college semester.)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Changes are still on the horizon for Anna because of these new developments. The cataract is a side effect of the steroid drops she has been using for years. We really need to get her off that steroid drop. We thank you for your past and continued prayers.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Anna continues to make the most of every opportunity that comes up at college. She recently participated in an all-day canoe trip from the college to the Susquehanna River. She LOVED it! Last week she let us know that she wouldn't be home for Fall Break, because she had signed up for a service project. That service project took place close to home, so we still were able to see her and catch up with her. She LOVED the time spent these past few days! It was a "mountain top" experience for her. The leaders of the trip combined their service with times of worship and reflection, and time spent experiencing God as He worked through them and spoke to their hearts. Anna's words describing the past few days were "AWESOME!" and "AMAZING!" </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Between Anna's experiences of this past week and the stories I've heard of relatives who are walking through very tough journeys and are trusting and relying on God's love and wisdom on a daily basis (and seeing evidence of His care in tangible ways), I was reminded of these verses (7 and 8) from Psalm 34: For the angel of the Lord is a guard: He surrounds and defends all who fear Him. Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!" Anna is certainly experiencing this joy lately! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-47663887358591103542017-09-05T21:44:00.000-04:002017-09-05T21:44:23.964-04:00Life Goes On . . . Joy in the Journey<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh17hExWri_Yl9s8BMb3dLFAI8zj8xClZf7Ojf6Ko8FzvBDscjiY-Q2d2_GuJNPJB6QkWMGDaRBOLGD_YAejhhR9JAJFSGGuHRndqU-naW3uf-XGVmwWbKlbp4bE48b6TEeOEW3Jw/s1600/Anna+and+Joel.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="828" data-original-width="628" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh17hExWri_Yl9s8BMb3dLFAI8zj8xClZf7Ojf6Ko8FzvBDscjiY-Q2d2_GuJNPJB6QkWMGDaRBOLGD_YAejhhR9JAJFSGGuHRndqU-naW3uf-XGVmwWbKlbp4bE48b6TEeOEW3Jw/s400/Anna+and+Joel.jpg" width="302" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Anna and her brother Joel at a recent family wedding</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">Anna is about ten days into her second year at college, after a good summer with a full-time office job and living on campus, building relationships with new friends. After last year's classes, she has a better picture of what career path she doesn't want and other areas she would like to explore and persue. (Isn't that what the college years are all about?!). She's sticking with the same major course of study of Human Development and Family Science but choosing a different minor.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">While Anna's joints are doing well, her left eye never did settle down completely with the macular edema, even after the ocular injection at the end of spring. We've been taking trips to the retina specialist about every 4-6 weeks all summer to keep tabs on the swelling. This past month's OCT (the picture of the back of the eyeball) showed that the swelling is a little worse than the July appointment. We return in mid-October, and another ocular injection is an option if the swelling does not improve.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The GOOD news is that Anna continues to focus on the journey of life in general instead of the JA Journey being at the forefront. It probably helps that we cut out the monthly Remicade infusions nearly a year ago. (Even though that situation created more of a challenge in controlling Anna's diseases.) Those 4-hour appointments, in addition to appointments with the rheumatologist and the eye specialist (every appointment 20 miles away through heavy traffic, which could take anywhere from 30-60 minutes) kept Anna's issues at the forefront of our minds and lives. We've gained a lot of perspective in the last year or so. Anna was a Child Life Volunteer for her spring semester, and she saw patients and families who practically live at the children's hospital. My husband, in his work setting, is getting to know a college student whose sister has been in the hospital for a few weeks now. The more I listen to people, the more I realize that ALL of us have "something" that we're dealing with. After 18+ years of this JA Journey, I hear other stories of even greater trials and hardships that people are facing and think, "With God's help, we can certainly handle this!" Jesus is our strength when we are weak.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">For now, I'm glad that Anna is smiling and is enjoying being a young adult. She truly is finding JOY in this leg of the journey. </span>Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-40366553171192518402017-06-10T16:06:00.000-04:002017-06-10T16:08:42.227-04:00Relief for the Summer!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "trebuchet ms" , sans-serif;">Has it really only been two weeks since the injection "into the butt" for the joints? After months of stress and distress and health issues, Anna's summer has begun with relief for the arthritis in her knee (we won't know the effectiveness of the periocular injection until we see the retina specialist in two weeks). So she has laid aside her textbooks for the summer, began working 40 hours/week in an office on the college campus until the fall, and is enjoying some friends and activities within the college community for the summer months. She shared these pictures from Pole Steeple in Cumberland County, PA. She and some friends hiked there last evening and evidently stayed to watch the sunset. I loved that she included a picture of the outcropping of rocks at the top. It's metaphorical for her journey these past several months. She's been through some hard and challenging times, but for now, she's come through them, able to see clearly and enjoy the beauty around her without the constraints of the pain, the limping, and the limitations to the sight in her left eye. As always, we are so grateful for those who pray with us, who cry with us, and for now you can smile and laugh and praise God with us! (And you can dance with us in celebration, although I wouldn't recommend dancing on the edge of the rocks at Pole Steeple!)</span>Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com2tag:blogger.com,1999:blog-18238382.post-63601063239984566842017-05-26T17:55:00.002-04:002017-05-26T17:55:32.687-04:00Something Different . . . . .<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">Disclaimer: Anna said that she gives my permission to share this! (And she laughed when I told her I was thinking of using this Norman Rockwell illustration.) We drove to Hershey yesterday so that Anna could get the steroid injection for her knee stiffness. While I don't have details, Anna had said that the doctor told her this was going to be an injection into her muscle and not directly into the joint. (I don't think Anna asked for the details like I probably would have---I like to know how something different is going to work.) Because we are familiar with joint injections, I told Anna I would drive her (she's had knee injections before, and I wouldn't want her to drive 20 miles home afterward). So Anna checked in with the receptionist, was called back within about 5 minutes, and she was back before another 5 minutes had passed! She was smiling--she was expecting an injection into her arm, but she said that it was the first time she's ever had an injection it her butt! She was surprised, and said that it was very different. She's going to let me know if she experiences good and quick results like she usually has from joint injections. I probably would not have needed to drive her.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Why do I share this? I'm not familiar with steroid injections into the muscle instead of the joint. I searched briefly online, but could not find much information on this. I'm curious to know if this will work well for Anna, and maybe other parents and patients will be interested in this information as well.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">And a piece of good news---an answer to prayer: Anna did tell me that she can already tell a difference in the vision in her left eye, after Monday's injection. We're praying that these two injections this week will bring Anna some relief and enable her to enjoy her summer on the college campus.</span><br />
<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-76187485172084865872017-05-23T19:36:00.000-04:002017-05-23T19:36:18.806-04:00For Such A Time As This . . . . . <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDl1gn06iZjMGsNbDFx8HctjlPqrL49trFk1YBzo4c1u0-L-H0-_OmKcrkO6HKIk1XzS06QUMLP2qxnpHKFlIqITM8xwryV5OVjDyo16ga3xfiZP94ugdb_aTorQVTbsbUbz1Xxg/s1600/such-a-time-as-this.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDl1gn06iZjMGsNbDFx8HctjlPqrL49trFk1YBzo4c1u0-L-H0-_OmKcrkO6HKIk1XzS06QUMLP2qxnpHKFlIqITM8xwryV5OVjDyo16ga3xfiZP94ugdb_aTorQVTbsbUbz1Xxg/s400/such-a-time-as-this.jpg" width="400" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Just over a month ago, Anna and I were on our way to Hershey for an appointment with her retina specialist. As I was driving, a classic song played on the radio: "For Such a Time As This" by Wayne Watson (from back in the 1980's). We listen to WJTL (FM90.3) out of Lancaster, which is not a classic station---they play mostly newer Christian contemporary music. I know the song; I like the song, and I remember this because for the rest of that April morning, I thought about the words of the song in relation to my life and what we were doing that day. I even posted a status on my Facebook page that day (April 19th) from the waiting area of the Eye Center at Hershey. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Yesterday was a day of appointments for Anna. Once again, we were on the familiar road to Hershey, with the first stop being the retina specialist. We were listening to WJTL as usual. I hear a song intro, and once again, about a month later, "For Such a Time As This" comes on. </span><br />
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For Such a Time As This</h2>
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<a h="ID=SERP,5278.1" href="http://www.bing.com/search?q=wayne+watson&filters=ufn%3a%22wayne+watson%22+sid%3a%22f746a2b1-0c6b-448d-a961-ccb411daf099%22&FORM=SNAPST" style="color: #600090; text-decoration-line: none; touch-action: manipulation;">Wayne Watson</a></div>
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Now, all I have is now<br />To be faithful<br />To be holy<br />And to shine</div>
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Lighting up the darkness<br />Right now, I really have no choice<br />But to voice the truth to the nations<br />A generation looking for God</div>
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For such a time as this<br />I was placed upon the earth<br />To hear the voice of God<br />And do His will<br />Whatever it is<br />For such a time as this<br />For now and all the days He gives<br />I am here, I am here<br />And I am His<br />For such a time as this</div>
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You, Do you ever wonder why<br />Seems like the grass is always greener<br />Under everybody else's sky<br />But right here, right here for this time and place<br />You can live a mirror of His mercy<br />A forgiven image of grace</div>
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For such a time as this<br />I was placed upon the earth<br />To hear the voice of God<br />And do His will<br />Whatever it is<br />For such a time as this<br />For now and all the days He gives<br />I am here, I am here<br />And I am His<br />For such a time as this</div>
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Can't change what's happened till now<br />But we can change what will be<br />By living in holiness<br />That the world will see Jesus</div>
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For such a time as this<br />I was placed upon the earth<br />To hear the voice of God<br />And do His will<br />Whatever it is<br />For such a time as this<br />For now and all the days He gives<br />I am here, I am here<br />And I am His<br />For such a time as this</div>
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Songwriters: WAYNE WATSON</div>
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© Warner/Chappell Music, Inc.</div>
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For non-commercial use only.</div>
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<span style="background-color: white; color: #767676; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Data from:</span><span style="background-color: white; color: #767676; font-family: Arial, Helvetica, sans-serif; font-size: 13px;"> </span><a h="ID=SERP,5279.1" href="http://www.lyricfind.com/" style="background-color: white; color: #600090; font-family: Arial, Helvetica, sans-serif; font-size: 13px; text-decoration-line: none; touch-action: manipulation;">LyricFind</a><span style="font-family: Trebuchet MS, sans-serif;"> </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So what does it mean? I don't know for sure, except that for the next few hours, "For such a time as this I was placed upon the earth, to hear the voice of God and do His will whatever it is" was playing in my head. (It stopped playing in my head once we left Hershey.) In part, I believe it means that there is a higher purpose for all that we experience on Anna's JA Journey. Because I feel a sense of purpose, we are able to face little and big things with an overriding peace. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Maybe I heard the song in my head because there was a young mom with a young baby who needed an eye procedure before Anna could use the procedure room for a steroid injection. Because of the discussion about the room use and schedule (Anna had another appointment to get to later, and we needed to use the room in a timely way), we knew there was a baby there, and then as we waited, we heard that tiny baby scream and cry. I told Anna, "That baby's mom needs us to pray for her." And then as the baby's cries intensified, I told Anna, "This is about the time when an infant's mom starts crying, as well." (All was okay afterward---the mama walked out with a peaceful infant sucking on a pacifier.)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Maybe it's a reminder that we are the "aroma of Christ," a reflection of God's love in our attitudes and actions as we encountered various people and situations and unexpected delays which made for a very long day and no opportunity to grab any lunch (we originally thought we would have adequate time to eat lunch and maybe get some shopping done---didn't happen!). Anna had a hunch that she would need a steroid injection in the eye yesterday. The vision test was the worst I've ever seen (for the left eye). The inflammation was quiet, but the macular edema was worse. Anna explained to the assistant that the letters straight ahead were blurry, but she could see me (sitting to the side) clearly. The OCT showed significant swelling in the back of the central part of her eyeball. Anna was calm and accepting of the decision to inject, and the injection procedure was faster than the first time she had this done (last summer). I still couldn't watch them stick a needle into her eye.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Anna then had a lengthy appointment with the rheumatologist. Because the appointment was at the clinic in Camp Hill, Dr. S. didn't have the supplies needed for a steroid injection for the knee, which Anna has been needing for many weeks. But we'll make another trip to Hershey on Thursday for that injection. Something new, though---Anna said they will inject the steroid into her muscle instead of the joint. I never heard of that. (Has anyone else?) Anna's liver enzymes are back within a normal range, so the dose of Methotrexate will be increased. That should help both the joints and the eyes.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We appreciate, as always, the prayers of so many family members and friends. We have seen some good things these past few weeks, even as Anna has struggled with a stiff knee and eye issues. Attending a smaller private college has been a blessing. Even though Anna does not yet have all the documentation in place to be "official" with the Office of Disabilities, she has talked with the Director of Housing, who graciously arranged for Anna to be on the first floor of the dorm for the summer, closest to the door and steps and walkways that lead to the center of the campus. Anna has begun the second week of her summer job, working in an office on campus, which is better for her than some of the other summer job options that would have required more physical stamina.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We continue on this journey, knowing and accepting that we are here "for such a time as this," and praying that we can encourage others who are on a similar path.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-73613482836077193242017-04-11T22:27:00.001-04:002017-04-11T22:57:56.254-04:00It Is Well With Our Souls--Even when God chooses to leave mountains unmoveable<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "trebuchet ms" , sans-serif;">"In times of trouble, may the Lord answer your cry. May the name of the God of Jacob keep you safe from all harm. May He send you help from His sanctuary and strengthen you from Jerusalem." Psalm 20:1-2</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The past month has seen little change in Anna's health. In fact, to those of us who see Anna occasionally, sometimes it seems like her joints are worse (because her main issue is her knees, we notice when she walks and as she moves around). We're at the point in our journey where this blog is not always first-hand information. Anna is officially an adult and manages her own health and contacts her doctors on her own. I only log into her Health Portal if she asks me to (to get my feedback on a message from her doctor, etc.). Those occasions are rare. Last I heard from Anna in regards to her messaging her doctor, she was waiting to hear from her rheumatologist, after inquiring about steroid injections to the knee (or knees--I'm not even clear on that!)</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKFLYrm954p9J8yvhUFaDrQCHjMdJ26mmct-ammWATNRqXmOSuBlqOPvXusgu-lFom-J8AIGTz4RruLrOLGqBvMKtDKAAeTP72upA4iKLP2brTNvzWqlNJ9IPE4-WQglmWM4_xA/s1600/20170408_114003_05%255B1%255D.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKFLYrm954p9J8yvhUFaDrQCHjMdJ26mmct-ammWATNRqXmOSuBlqOPvXusgu-lFom-J8AIGTz4RruLrOLGqBvMKtDKAAeTP72upA4iKLP2brTNvzWqlNJ9IPE4-WQglmWM4_xA/s400/20170408_114003_05%255B1%255D.jpg" width="233" /></a><span style="font-family: "trebuchet ms" , sans-serif;">Anna has had two eye appointments since I last gave an update. The right eye has more inflammation (frequency of eye drops was increased); the left eye inflammation was a bit better; the swelling in the back of the eye is not worse, but no better. Next week, if there is no change with the Macular Edema, she will most likely receive another ocular injection.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Anna is like the Energizer Bunny who keeps on going. Despite the challenges of stiffness and walking, I hear that she went for a hike the other day. And she continues to volunteer at the medical center, as well as with a program for some refugee children in our area. She shows up for her college classes, shows up for her work study job, has a summer job lined up, and she keeps smiling. She gently resists our suggestions for ways that might make life a little easier for her given her present circumstances, assuring us that she's doing fine!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Since I have become more of an observer than participant in Anna's health, my main role lately has been to pray fervently for Anna and her doctors and to keep the faith. (Anna does fine with that, as well.) This year of transitioning to an empty nest has me really seeking God on what He wants me to do next (sometimes the next minute, sometimes the next day, etc.) Since January, I've become more intentional in saturating myself with Scripture (thanks to a friend who recommended theFelicityBee.com---a plan for "Inscribing the Word" each day---writing God's Word on our hearts.) I've also been involved in a very convicting Bible Study with some ladies, taking a hard look at our attitudes---and striving to live a life of abundant faith instead of "wildnerness living." </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">At this moment, this JA Journey seems so very challenging. We keep waiting to see if the medications prescribed for Anna (much less potent than any of the TNF inhibitors that worked so well but caused medication-induced lupus) will make a difference in her quality of life. I can't remember when Anna's health was lower than it is right now. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I talk so often in this blog about our Creator God (our Redeemer, our Lord) who loves us more than we can even know. I have to tell you---if you have read most of my blog posts, you know that God puts a lot of songs in my head---especially when I wake up in the middle of the night or in the mornings. The song that was in my head in the early morning before Anna's eye appointment last week was "Overwhelmed" by Big Daddy Weave. As the song was running through my head, I was talking to God, praying about the upcoming appointment, and telling Him that I really wanted to be overwhelmed by Him that day. I wanted to feel Him and have some tangible evidence of my faith. When the Retina specialist was talking to us, I accepted the fact that we weren't going to overwhelmed with good medical news that day. But can I tell you that in the next 24 hours, whenever I checked Facebook and saw some shared posts (like a Beth Moore video clip or some blurbs of encouragement by Anne Voskamp), or when I worked on my Bible Study homework or my "Inscribe the Word" project for this year, or when I got in the car with my favorite Christian radio station on---I WAS overwhelmed by God's presence. Every word in those posts or on the radio or in the Scripture I was reading was penetrating my soul---all of them were pointing to the very same Scriptures (and I don't believe in coincidence), so I read them several times that day. I was thinking later that it was almost like being blanketed with God's love that day. And I know why God doesn't do that every moment of every day---His love and care is so overwhelming that I would be a blubbering mess of gratefulness and not be able to function. As I watched my son run a Steeplechase race on Saturday---a difficult, long, and grueling race---I was thinking that our journey can be like that, and we have God as our "coach" and Father, and a great cloud of witnesses (like the fans at a track meet) who are cheering us on and encouraging us and loving us through the grueling obstacles we face.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">We still have "this hope as an anchor." Thank you for your continued prayers and encouragement. My Bible Study homework this past week was on "faith." Replacing our attitude of doubt with a heart of faith. The homework talked about the importance of surrounding ourselves with other people of growing faith who will encourage us and pray for us and speak Scripture into our lives. Some of you do that for us. Thank you.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">And just in case you like to watch YouTube videos, here is a song which God used to speak to my heart on that day I asked Him to overwhelm me. It was playing on the radio, and in that moment, I knew He intended it for me:</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">(Here are some of the lyrics before I post the link to the video)</span><br />
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<span style="background-color: white; font-family: "helvetica neue" , "arial" , sans-serif; font-size: 12px;">I know You're able and I know You can</span><br />
<span style="background-color: white; font-family: "helvetica neue" , "arial" , sans-serif; font-size: 12px;">Save through the fire with Your mighty hand</span><br />
<span style="background-color: white; font-family: "helvetica neue" , "arial" , sans-serif; font-size: 12px;">But even if You don't</span><br />
<span style="background-color: white; font-family: "helvetica neue" , "arial" , sans-serif; font-size: 12px;">My hope is You alone</span><br />
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<span style="border: 0px; font-family: "helvetica neue" , "arial" , sans-serif; font-size: 12px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: white;">But God, when You choose</span><br style="margin: 0px; padding: 0px;" /><span style="background-color: white;">To leave mountains unmovable</span><br style="margin: 0px; padding: 0px;" /><span style="background-color: white;">Give me the strength</span><span style="background-color: white;"> to be able to sing</span><br style="margin: 0px; padding: 0px;" /><span style="background-color: white;">It is well with my soul</span><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><br style="margin: 0px; padding: 0px;" /></span></span><br />
<span style="border: 0px; font-family: "helvetica neue" , "arial" , sans-serif; font-size: 12px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Read more at http://www.songlyrics.com/mercyme/even-if-lyrics/#X66kHypjvJ5Xe2VA.99</span><br />
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<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-3197032166769150152017-03-09T20:53:00.000-05:002017-03-09T20:53:42.007-05:00Still in a Storm on This Journey . . . . Update<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">I can recall many times over the past three decades when we faced rough spots, and I've said to myself, to my husband, and to my children, "God has been so faithful in the past, and we can trust Him to be faithful in the present and in the future." Sometimes His faithfulness doesn't mean that we see a miracle. Sometimes things get worse. I do know that when our journey gets stormy, and I share with our support system (our friends, family, and network of families going through similar circumstances), that support system lifts up Anna (and us) to Jesus. We continue to pray for Anna's body as the Plaquenil (at a half-dose now, because of adverse side effects) does little, if anything, to keep the inflammation at bay, not only in both eyes, but also at least one joint. Anna's knee has been very painful these past ten days. We also pray for Anna's doctors as they work to determine what will help Anna with the least side effects. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Anna had an eye appointment yesterday. My husband went with her instead of me this time (he already had a day off, and I didn't then have to interrupt my work day and make up time later). When I got home, I saw the OCT (the picture of the back of Anna's eye), and the swelling (macular edema) is definitely back. I didn't see Anna before or afterwards--she is so busy with college work as she gets ready for spring break. So the realist in me has been a little sad, a little worried at times, wondering how Anna is doing (emotionally and physically), remembering how the first several months of 2014 were when the macular edema first surfaced, and stress was very real, and school work (high school at that time) suffered.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">However, Anna just "Voxed" a message to me this evening. (We use an app called "Voxer" and she and other family members and friends can record messages---sort of like verbal texting---we can send pictures and videos and text messages, as well, individually or in groups. Our family really likes it, and we use it frequently.) She sounded upbeat, even though she has a LOT of work tonight and tomorrow before spring break---said she wouldn't even be able to listen to any replies I may send or read the latest e-mail I sent her last night. As she is processing all that is happening, she assured me that this recurrence of the macular edema and eye issues is different than when Humira failed in 2014. Anna was thinking that I would probably be updating this blog soon, and she gave me some positive thoughts to share:</span><br />
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<li><span style="font-family: Trebuchet MS, sans-serif;">In 2014, when her vision was a problem, we had no idea what was happening, and it took weeks if not months for the pediatric ophthalmologist to realize that maybe she had swelling in the back of her eye (he did not have equipment to test for that). Now we know what macular edema is. It's no longer an "unknown." And she trusts the retina specialist to stay on top of the issue and do what needs to be done in order to do everything possible to preserve her eyesight.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">In 2014, she was going back and forth between the pediatric ophthalmologist and the retina specialist, and juggling the two very different personalities and methods and relaying information from one to the other--that was stressful! Before entering college, Anna pared down to one eye specialist---keeping the retina specialist who treats adult patients as well as pediatric patients, and who works at the medical center where everything they need for testing and for treatment (like ocular injections) is readily available.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">Those stressful months in 2014 led Anna to meet frequently with her awesome high school guidance counselor (God bless him!---I'm still thanking God for his compassion and wisdom), who helped her come up with coping mechanisms and practices to help manage the stress of health issues and frequent appointments and a boatload of assignments and tests. She now knows ways to stay organized which help to keep her from being totally overwhelmed with everything.</span></li>
<li><span style="font-family: Trebuchet MS, sans-serif;">We don't have as many appointments to Lancaster (in 2014 we were going to Lancaster every six weeks for orthodontia and preparation for jaw reconstruction surgery in 2015). So that's one thing off our plate. (Now she's on a six-month appointment schedule with the Lancaster Cleft Palate Clinic and doesn't go back until June.)</span></li>
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<span style="font-family: Trebuchet MS, sans-serif;">I was thinking today that obviously, God's plan for this moment is not any miraculous healing. So maybe one purpose of this storm is about changing me and my own thoughts and attitudes. This entire journey has been a process of changing me (and I can only speak for me---not Anna). Please know that when you pray for us, you ARE helping. Even when the answer is not some fairy tale ending. With your prayers, Anna is staying positive and sounding upbeat and she is filled with hope and excitement of her spring break plans to visit her sister and family in Tennessee in spite of knee pain and vision issues. Your prayers for her doctors help (I've seen it in the past and trust we'll see again that they work hard to come up with creative ideas and options to help Anna). Your prayers for us help---to keep this journey in perspective. This is not all that our life is about. It's just a very small part. I'm reminded often that each and every day is a gift. </span></div>
Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com1tag:blogger.com,1999:blog-18238382.post-223217238825391472017-02-22T22:06:00.000-05:002017-02-22T22:06:08.480-05:00One Step Forward, Two Steps Back--Praying for Wisdom<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "Trebuchet MS", sans-serif;">Twenty days can bring a whole lot of change, and not all of it good. In the last twenty days, Anna stopped taking Methotrexate (because of elevated liver enzymes). She began taking oral Prednisone and Plaquenil. The oral Prednisone was finished after a week (thank the Lord! Anna does not like what Prednisone does to her mind). In the middle of that medication dose, Anna's foot was feeling so much better, but as she tapered the medication, the arthritis returned. So her rheumatologist arranged for her to have a cortisone injection into the joint this past Friday. This was done by the radiology department at the medical center, as the joint is to tiny and the procedure needs to be precise. Afterward, Anna wished she had her phone or a camera with her. She was able to watch on the monitor as they completed the procedure. She thought it fascinating to see them insert the needle into the joint. Within 12 hours, the foot was feeling good! In the past, I described this as a toe issue, but Anna explained that it wasn't exactly the joint in the middle of the toe---it was the joint that connects the toe to the foot. Anna has grown to greatly appreciate cortisone injections! Last week Anna described walking as painful. This week she is back to going for runs on campus.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Thirteen days into taking the newly prescribed Plaquenil, Anna sent me pictures of a rash on her cheeks. She described some other symptoms of side effects which she was experiencing. She contacted her rheumatologist, who suggested that Anna stop taking Plaquenil for a week to see if those symptoms would go away. They did.</span></div>
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medications for almost a week and just eye drops for the eyes. We discovered that Methotrexate had been doing a great job at controlling inflammation in Anna's eyes---even without the Remicade that we had to abruptly stop in early October. We were dismayed to discover that inflammation is back in BOTH eyes (the right eye has been quiet for years), and the macular edema is recurring in the left eye. So what do we do now? The retina specialist put in a direct call to the rheumatologist and left a message. They will confer with each other to come up with a plan to control this inflammation. (Dr. N---the eye doctor is willing to use ocular injections, although the risk of cataracts increases with the frequency of those). For the next two weeks, she is adding eye drops. And she told Anna to call her and even have her staff page her if she is in surgery if Anna has any concerns.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">The Hershey Eye Center became a prayer room/area for me today. As soon as Anna took the visual test, I knew that it would probably not be the best appointment. I was praying for wisdom from God for Anna's doctors. That prayer continues.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">This journey is getting rather bumpy again---almost a little out-of-control. But I know that Jesus remains in control. The joy of the Lord is our strength---keeps us from drowning in worry and sorrow (although I still tend to sigh a lot as I process all of these new developments). I just sent out some cards to some people today, and the notecards have a verse on them that kept running through my mind today: "May the God of hope fill you with all joy and peace as you trust in Him." I'm praying that verse over myself today. Thank you for your prayers for Anna and her doctors.</span></div>
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Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-59639676278910483302017-02-05T20:16:00.000-05:002017-02-05T20:16:32.433-05:00A Spoonful of [Hershey's Syrup] Helps the Medicine Go Down . . . .<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidSo_F_65w9Y5TBmf9zeUFPaRIsEr_1oHE9XaHvgXI28nXGDwMTc5dbFx7mUP2-t2SeTFK3StRP5LpVDh2L1ADWRpCTmQ-PB0nuJgmt1RhRfVBbJGWVu-st7UAJlInq_OrarlTKw/s1600/16403057_1350467775017008_1754175180830277765_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidSo_F_65w9Y5TBmf9zeUFPaRIsEr_1oHE9XaHvgXI28nXGDwMTc5dbFx7mUP2-t2SeTFK3StRP5LpVDh2L1ADWRpCTmQ-PB0nuJgmt1RhRfVBbJGWVu-st7UAJlInq_OrarlTKw/s320/16403057_1350467775017008_1754175180830277765_o.jpg" width="320" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Lord, I come, I confess<br />Bowing here I find my rest<br />Without You I fall apart<br />You're the One that guides my heart</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Lord, I need You, oh, I need You<br />Every hour I need You<br />My one defense, my righteousness<br />Oh God, how I need You . . . </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Jesus, You're my hope and stay*</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I'm learning to not be totally devastated when the "game" of controlling arthritis and uveitis totally changes, when most of the cards to help win the game (is there ever a winning of this game?) are taken off the table. Maybe it helps that Anna has now taken control of her medical appointments and medications. I'm now more of an observer and coach on the sidelines than one of the active players. Maybe it helps that even when Anna has moments of describing the pain in her toe as a "7" on the scale of 1-10 (with her reminder that she hardly ever registers pain with her arthritis), that's only a momentary exclamation of her reality in the middle of a conversation mostly filled with happiness and excitement about college and some of her classes, about a book she's reading, and some of the professors, and an alternate chapel she's attending. She is doing well with not allowing a chronic disease to control her life or define who she is.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Anna asked me on Thursday (on the way to an appointment with the rheumatologist) if I was okay with NOT coming in the exam room with her. She's an adult, so what can I say but, "okay"? She wanted to talk to the doctor herself, and had been researching and thinking about the best way to "articulate" (her word) to the doctor her desire to get a cortisone injection in her right toe, which has been causing her many problems. (She wants to go running for some exercise, but the toe hurts too much. I asked if she could go for a swim in the college pool, but she said it still hurts then, because she does need to stand in the pool sometimes---and then there's all the walking around campus for classes and work and meals.)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Anna did give me a rundown of the appointment as soon as she reached the waiting area. The results of that doctor's visit did change the "game" for Anna. We had been grateful that she could still be on Methotrexate, but now her liver enzymes are elevated, and she can no longer take the Methotrexate. The rheumatologist wasn't able to give Anna a cortisone injection into the toe---she first wanted xrays taken to be sure of what's going on inside that swollen and painful toe. And she also said that she can't do an injection into the toe in the office, because the joint is so tiny and an injection would have to be precise. Anna was given prescriptions for a 7-day dose of the dreaded oral Prednisone. And for the long term, a 'script' for Plaquenil. Anna was on Plaquenil probably over 15 years ago, and it wasn't effective for her then. But Anna did not remember that she had been on it before, and I was not in the room. So we will give it another go and see what happens. I did remember that when she took it before, the doctor and pharmacist both warned me that it is a very bitter pill to swallow. I remember mixing the bitter compound with equal parts of Hershey's syrup in an oral syringe to get it down. So when we stopped by Target to pick up the medications, I also purchased a bottle of Hershey's syrup for her to keep in her dorm room.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Anna and I both separately have been "drinking in" Scripture. I started a new devotional plan in the new year and also began a 10-week Bible study, both of which keep me saturated in God's Word. This has been a blessing. I was reading last night a verse and a commentary which talked about how the Holy Spirit brings Scriptures to our minds which related to our current circumstances---part of how He works. I've experienced this especially this past week. Scriptures flooding through my head and heart (like a shower!) with assurances of God's love for me, and for Anna. Reminders of the Israelites who wandered in the wilderness and complained and didn't trust Him in spite of the tangible presence of God on their journey (the cloud by day and the fire by night) and the miracles He performed on their behalf. His reminder to remember His faithfulness in the past and His faithfulness to come ("The steadfast love of the Lord never ceases---He mercies never come to an end. They are new every morning! Great is His faithfulness."). Every day is a gift. And He continues to lead us in His love and faithfulness. Jesus IS our hope and stay on this unpredictable journey. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: x-small;">*</span><span style="color: #767676; font-family: Arial, Helvetica, sans-serif; font-size: 11px;">Songwriters: CHRISTY NOCKELS, DANIEL CARSON, JESSE REEVES, KRISTIAN STANFILL, MATT MAHER</span></div>
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© CAPITOL CHRISTIAN MUSIC GROUP</div>
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For non-commercial use only.</div>
Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com2tag:blogger.com,1999:blog-18238382.post-57428195170720316872017-01-19T22:50:00.000-05:002017-01-19T22:50:20.858-05:00Still Cautiously Optimistic . . . . and navigating adulthood<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">It's was the first week of October 2016 since Anna had her last infusion of a TNF inhibitor. And her eye remains clear of inflammation and any swelling as of ten days ago. That's three months with her health pretty much holding steady. She still takes Methotrexate and Leucovorin as well as Pred Forte eye drops and Prolensa eye drops. So another inward sigh of relief. We have monthly appointments with the retina specialist to keep a close watch on the eyes. (our appointments with Dr. N. are already scheduled through May)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Anna continues to do well in college, having begun her second semester as a full-time, first-year student. There have been some things along the way that are a part of navigating adulthood while having a chronic disease. Since my purpose in keeping this blog is to help others who are traveling similar journeys, I was thinking that there are key aspects which we as parents need to prepare our young adults for, and to encourage them along the way.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">One tip for college students: It's a good idea (if not essential) to register with your college's Office of Disabilities. Anna is still working on this (it's a process, requiring a letter from your doctor, etc.), but she's realizing the value. We've been told that the awesome people in this office will help advocate for Anna with professors and classes and in her work study position when necessary. While Anna's overall health is not bad, she still has frequent absences for doctor's appointments (which even understanding bosses and co-workers may begin to question when a person doesn't look sick). </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The Office of Disabilities will also be helpful when other situations are encountered, and this brings me to another tip for parents. It's absolutely necessary that our young adult children know which immunizations they are not allowed to have. Anna does know this information, but she has been up against a situation where people are questioning why she doesn't have the varicella (chicken pox) vaccine and Anna was feeling some pressure from them. She has been working to gain approval to volunteer at a hospital (part of a requirement for her major and for a course she is taking this spring). Part of the process was to have a physical with the hospital's Employee Services department. The nurses there (the same huge hospital system where Anna's doctors are in practice) did not understand why she could not have these vaccinations. Anna confirmed with me about the varicella vaccine, and I urged her to get a letter from her adult rheumatologist to put in her file (that's what I did when we had a similar situation with the middle school nurse years ago). I also urged her to "stand FIRM" under the pressure in these situations for the sake of her health. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I spent many, many years trying to ensure that everyone (multiple caregivers and school personnel) were on the same page. Now it's Anna's turn to navigate this path, with the added pressure of college life. (This aspect of parenting---the stepping to the sidelines and encouraging and cheering on the young adult child while allowing them to take the driver's seat---is an adjustment, and not always easy, but essential for their successful transition into adulthood. I spend a whole lot of time talking to Jesus about this!)</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvjG5yLx_cnb5JeFt5706v9tLyU3Dyzs4rOep_1w517wRnGtC_hviIVJ3VbuU0OR_31sDODz9mUE5JsfB5_aDcVadDbiNNPHKY5B5_CjjNQ6jF08tJpA6jo4HaSwVICcAjdmFxDA/s1600/Anna+with+Olan.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvjG5yLx_cnb5JeFt5706v9tLyU3Dyzs4rOep_1w517wRnGtC_hviIVJ3VbuU0OR_31sDODz9mUE5JsfB5_aDcVadDbiNNPHKY5B5_CjjNQ6jF08tJpA6jo4HaSwVICcAjdmFxDA/s320/Anna+with+Olan.jpg" width="309" /></a><span style="font-family: Trebuchet MS, sans-serif;">Despite these challenges that arise, Anna still loves college. I love to hear that she is having fun with friends in the evenings and on weekends. I love to hear when she receives some good news and exclaims, "I'm going to happy for at least a WEEK!" And I'm glad that she still uses me as a sounding board. (We use the Voxer App on our phones, and she messaged me tonight just to talk through some scheduling issues she's facing.) I love that she remains close to her older siblings. She and her brother took a trip to New York to see one of their favorite YouTube people: Olan Rodgers. She plans to visit her sister and brother-in-law and nephew in Nashville over spring break.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I was just telling Anna tonight--sometimes when I think back over situations, knowing that we've prayed and prayed for God to guide and direct us, I can really see that He certainly has in so many situations. So when other situations come up and we pray through them and work through them and continue to take steps in the journey, we can be confident that He is with us, and remember that He has promised to work everything for good, because we love Him and are endeavoring to follow His calling.</span><br />
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<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-29153769603785335822016-11-30T19:44:00.000-05:002016-11-30T19:44:34.954-05:00The Dreams of Moms . . . . Holding Steady<div class="separator" style="clear: both; text-align: center;">
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I had a dream one night before the appointment. In my dream, Anna's uveitis had returned. It was a dream that startled me awake.<br />
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In the past 17+ years since Anna's initial diagnosis, I've learned that for me, it's best not to go into appointments with any wishes, hopes, dreams, etc. I'm a realist, when it's all said and done, and I've concluded that this is the journey that God has allowed us to travel, and we can rest on His promises that although life will have troubles and trials, we have the opportunity to grow and to be refined (and better reflect the light of Jesus) in the process of the journey. Each time I've been tempted to wallow and worry about what will happen to the uveitis without biologic meds, I've heard a whisper in my head---a reminder: "Who of you by worrying can add one hour to the length of his life?" (Matthew 6:27 AMP)<br />
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Monday was Anna's first eye appointment since we received the news that she is no longer able to use any TNF inhibitors (like Remicade, Humira, etc.). We started out with Anna's vision test (not terrible). She did tell the assistant that she was noticing a bit of blurriness sometimes at long distances. Given my dream and this information, I was mentally preparing myself for not-so-good news. BUT, the OCT (a test which takes a picture of the back of the eye) was clear (Praise God!), and as Dr. N. thoroughly examined every square centimeter of Anna's eyeballs, she found no evidence of any inflammation. Dr. N. was not commenting during those long moments of examination, and when I told her afterwards that I had dreamed the inflammation had returned, she apologized for not saying anything sooner! She said, "These are the things moms dream about." <br />
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So relief for today. Appreciating these days and weeks of no inflammation and no swelling in the back of the eye -- and no injections or infusions! Thanking God for the gift of each new day, for this semester of college that Anna is enjoying and appreciating. In this photo, she is up on the ropes course at the college, with an experienced partner beside her, navigating the course as a strong cold front blew in with gusty winds (right as she was up in the air!). Sometimes I think life seems a bit like this ropes course: exciting, a little scary, a little treacherous at times, but exhilarating when you make it through some obstacles and precarious situations. Life with a chronic illness certainly has some precarious situations. How thankful I am that we are anchored to Jesus---our rock.Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-15766794171054901332016-11-07T21:53:00.000-05:002016-11-07T21:53:54.782-05:00Big Change Ahead -- Taking a Leap Into the Unknown<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">Ready or not---we are taking a different path on this journey. Anna was scheduled for a Remicade infusion this afternoon, but before we headed to Hershey, her new adult rheumatologist had scheduled an appointment to talk (a little closer to home---she was in a satellite office today). She (the adult rheumatologist--Dr. S.) is concerned about the results of some labs that Anna had done last month. Dr. S. says that the numbers indicate that Anna is heading toward medication-induced lupus. I have always tried to be mentally prepared before these appointments, so I had been thinking about this appointment and all of the possibilities and options available. I was assuming that maybe we would taper the Remicade and discuss other biologic therapies. I was not mentally ready to hear that we are stopping Remicade for Anna, and all of the other TNF-inhibitors are now "off the table," because it's not just Remicade that can cause medication-induced lupus. It's all of the biologics. The Remicade infusion for this afternoon was abruptly cancelled. No more monthly 4-hour appointments in Hershey. The course for now is to continue with the Methotrexate (not increasing it, because the liver enzymes numbers have been slightly elevated lately), and continuing the frequent appointments with the eye specialist so that we know what's happening with the uveitis.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">There are a multitude of thoughts and emotions that I have experienced this afternoon (I can't speak for Anna, although we talked a little bit about this as I took her back to the college). On the one hand, I feel like cheering and maybe dancing, because she is done with those potent biologics. That alone deserves a celebration---maybe? On the other hand, there's a little bit of panic. The battle over the years to control the uveitis and protect Anna's sight in her left eye has been long and tough and heart-wrenching at times. We have relied on first Humira, and then Remicade, to "keep the beast at bay." On the one hand, I am not a doctor, and Dr. S. knows SO much more than I do. On the other hand, I keep thinking, "Has she read Anna's medical history? [I think she has.] Does she know the extent of the uveitis flares we've experienced in the past? What in the world is going to happen with Anna's eyes since we're quitting biologics 'cold turkey'?!" I don't want Anna to have Lupus, but I also want to protect her eyesight.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">If you have read most of my blog posts, you know that the Lord often speaks to me through songs. After the appointment today, a song was playing on the radio, and that little voice in my head kept bring my attention to some of the words of Matt Redman: </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Scars and struggles on the way<br />But with joy our hearts can say<br />Yes, our hearts can say</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Never once did we ever walk alone<br />Never once did You leave us on our own<br />You are faithful, God, You are faithful</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We are definitely taking a gigantic leap into the unknown, and it's a little frightening. Yet we know that God has been faithful in the past and will continue to be faithful, and we never walk alone.</span></div>
Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-41943237725147578162016-10-31T22:42:00.000-04:002016-10-31T22:42:20.259-04:00First Semester College Days--- Quiet Eyes, Remicade, Labs, and Possible Changes<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga4wcQxyU9ki8RUsDk0nWk9My-H6EccxmKFd6NHIUtzjxh2lKk7hkujefRsojqMV692wL3Qygw_09vs7JdMoZbH8l6I_DN157pJUjjU6JVnRWJUjXnEtMVMUd1g8f9OZglGOCs1g/s1600/Ribbet+collage+vertical.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga4wcQxyU9ki8RUsDk0nWk9My-H6EccxmKFd6NHIUtzjxh2lKk7hkujefRsojqMV692wL3Qygw_09vs7JdMoZbH8l6I_DN157pJUjjU6JVnRWJUjXnEtMVMUd1g8f9OZglGOCs1g/s640/Ribbet+collage+vertical.jpg" width="211" /></a><span style="font-family: "trebuchet ms" , sans-serif;">Anna is about halfway through her first full semester of college, enjoying some of the fun activities (Homecoming, trip to Longwood Gardens for a class, attending a national conference in Minneapolis), persevering through the times of stress (papers and exams and projects), exploring all of the opportunities (volunteering with the Student Activities Board and some other groups, and possible semesters or service projects abroad), and occasionally taking time away from her classes and work study job to travel to Hershey for doctor's appointments and Remicade infusions.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">One doctor's appointment was today--with the Retina specialist. Such a relief and sense of gratitude to God that her eyes have been quiet--no inflammation at all!--for the past few months, since that ocular injection. (So many of you pray for Anna, we know---thank you!). Dr. N. did mention last month that she saw maybe the very beginnings of a cataract in the left eye. Not surprising at all, really, since Anna has been taking Pred Forte drops in that left eye for years. I'm actually surprised (and grateful!) that we've gone this long without any side effects. Anna asked about this "beginning of a cataract" today, and Dr. Neely said that it's almost not even there---just a very faint tiny haze in one spot as she shines the light over the surface of Anna's eye. Dr. N. is not overly concerned right now, but she does want to lower the dose of drops, especially since Anna's eye has stayed so quite and clear for several months.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">We don't know what will happen with the Remicade. The rheumatologist encouraged Anna to make an earlier appointment to discuss the dose and Anna's lab results. We will see her next Monday instead of waiting until December. Dr. S. has been concerned about Anna's current dose of Remicade. Her initial plan </span><span style="font-family: "trebuchet ms", sans-serif;">had been to lower the dose. Now she would like to talk to Anna about taking her off Remicade and changing to another medication (I have no idea which one). Dr. S. says that Anna's labs indicate a lupus-like disease, which high doses of Remicade have been known to cause. The good news is that Anna is not feeling badly, or feeling like she may have lupus or a similar disease. I looked at Anna's lab results, and the abnormalities were very slight---not significant. I had been concerned about abnormal liver enzymes in previous months, but those numbers have now stabilized.</span><br />
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<span style="font-family: trebuchet ms, sans-serif;">I can almost feel the prayers of everyone. I have felt peace instead of worry and alarm as we face some changes and have no idea how these changes will affect Anna's eye and/or her joints. I am learning over the years to focus on the now instead of worrying about what might happen in the future (still a work in progress, but I think I'm getting a lot better!). As you can tell from Anna's pictures, she is experiencing joy in the journey!</span><br />
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<span style="font-family: trebuchet ms, sans-serif;">No song for this post, but some verses from Philippians 4:</span><br />
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<span style="font-family: trebuchet ms, sans-serif;"> "</span><span class="text Phil-4-6" id="en-NLT-29409" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">6 </span>Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.</span><span style="background-color: white; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px;"> </span><span class="text Phil-4-7" id="en-NLT-29410" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: "Helvetica Neue", Verdana, Helvetica, Arial, sans-serif; font-size: 16px;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">7 </span>Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."</span><br />
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<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-56126345045103800842016-08-29T21:34:00.000-04:002016-08-29T21:34:05.604-04:00Some Stability in the Middle of Major Life Changes<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSn5HBjy-WyrH2yAvY90jHgOqzVZG-K1cg1Ddm5j4Xf9t13grzrKl-hbKcIswieD1bkm_b10FHWzsi5KHxRXJBd5EYbPJ7fdNYTK9qWdYrxsUd1iYMr8SBnWjGVf2FfRmJITolKg/s1600/IMG_7878.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSn5HBjy-WyrH2yAvY90jHgOqzVZG-K1cg1Ddm5j4Xf9t13grzrKl-hbKcIswieD1bkm_b10FHWzsi5KHxRXJBd5EYbPJ7fdNYTK9qWdYrxsUd1iYMr8SBnWjGVf2FfRmJITolKg/s400/IMG_7878.jpg" width="400" /></a></div>
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This past week has been full of a major life change for Anna (that's what her retina specialist calls it, and she is absolutely right!). So until now, I haven't taken an opportunity to let everyone know the results of Anna's last eye exam (almost two weeks ago!). Can I tell you how grateful I am that in the middle of so many changes for Anna, she has chosen to move forward with an eye specialist who has known her and treated her for almost two years? With all of the mixed feelings of aging out of the pediatric rheumatology program and the learning curve for both Anna and me, her mom, in the switch to adult rheumatology, having her calm, brilliant retina specialist gives me a whole lot of peace. <br />
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The OCT for Anna's left eye was completely normal. Praise the Lord! That means that the swelling in the back of the eye---the macular edema---has receded. The steroid injection to the back of the eye did not cause her eye pressure to rage out of control. Additionally, Anna's eyes were totally clear of any inflammation! First time in months! Thank you to all who are constantly praying for Anna. She can begin her college career (classes begin tomorrow!) without an eye issue lingering in the background. We decided on the way home from that appointment that Dr. N. is a stable force in all of these changes. We will hang on to her wisdom, her insight, and her calmness as so many other aspects of Anna's life are changing. For now, she has become what I call our "default doctor"---the doctor you listen to the most when so many other doctors are telling you very different things.<br />
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We explained to Dr. N. (the retina specialist) the concern of Dr. S. (the adult rheumatologist) regarding the Remicade dose, which Dr. S. considers "a dangerous level." Maybe that's true for rheumatology patients, but eye specialists have gone with higher doses to treat eye inflammation than Anna is currently receiving (and I think patients with Chrone's Disease are probably on higher doses, as well, although I don't know that for certain). Dr. N says (in her calm, matter-of-fact manner), "With a major life change like starting college, lets not rock the boat." She was willing to reduce the frequency of the Pred Forte drops, but she does not want to change the Remicade dose at least for another month. she said, "We just got Anna's eye to a quiet point after a very long time!"<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvLODyVauu7zi_Btw2YC9KJq_WZHN-NMW0tPACd_iuxRWNsQSSEOEt4WQbbwMnj7RjUGy1dhRM6YHG4j8iyiaIB_leKAlIlkttv8kXu9o6MxalKA1pDCe8-ZIjg4jhM0uTuenqmg/s1600/IMG_7873.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="296" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvLODyVauu7zi_Btw2YC9KJq_WZHN-NMW0tPACd_iuxRWNsQSSEOEt4WQbbwMnj7RjUGy1dhRM6YHG4j8iyiaIB_leKAlIlkttv8kXu9o6MxalKA1pDCe8-ZIjg4jhM0uTuenqmg/s400/IMG_7873.jpg" width="400" /></a>And now we come to the point where I listen to all of this medical information, but step aside as a mom, and allow Anna the adult to address these issues and be the team coordinator between doctors. I changed the patient portal so that I don't even receive notifications anymore. All messages will go directly to Anna, and she will communicate with her doctors and let me know what she needs and wants me to know. Among my many parting words to Anna when we left her on the college campus, "Stay in touch with your doctors!"Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-2946809027795216012016-08-15T20:18:00.000-04:002016-08-15T20:18:29.473-04:00"Be Still My Soul . . . . Through Every Change He Faithful Will Remain"<div class="separator" style="clear: both; text-align: center;">
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Last week was Anna's official switch to adult rheumatology. The rheumatologist and the resident were very thorough, and had a good knowledge of Anna's history. I liked them both. Anna's first thought when we left was that she missed her pediatric rheumatologist. But she has known him for almost all of her life, so this change will take some adjusting. Relationships take time.<br />
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One new thing for parents who are making the switch---and maybe you've already experienced this. I was asked to step out of the room for a little bit, so that the resident could speak freely with Anna about sex and drugs and alcohol. He didn't tell me what they were going to talk about, but Anna filled me in later.<br />
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Since Anna is an adult, and all medical decisions go through her (although I'm always available for consultation!), I was trying to be very intentional about mostly listening and not talking. There was a lot of information to listen to. Different doctors mean different perspectives and opinions. Dr. S. (the adult rheumatologist) is very concerned about Anna's Remicade dose, feeling that it is very high. Anna is at 15 kl/per kg, and Dr. S. feels that 10 kl/per kg should be the maximum. I did speak up to explain that we went that high because Anna's uveitis was in a stubborn flare. (I didn't mention that Dr. Foster in Boston recommended that Anna be on 20 kg/per kl---so I was thinking that at least 15 wasn't as high as 20!) Dr. S. would prefer to decrease the Remicade and increase the methotrexate. However, when Anna had labs done later (before the Remicade infusion), two of her liver enzymes were elevated, and I know this means that we may have to reevaluate Methotrexate in light of those numbers. Dr. S. is waiting to make any decision on these medications until Anna sees the retina specialist this week, to see the status of the uveitis and macular edema. It sounded like Dr. S. has a good working relationship with Dr. N. (the retina specialist), so that is good---they can talk about it together. They both seem to be brilliant doctors who know their stuff.<br />
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The MRI Anna had done in June showed that there has been more active arthritis in the TMJ since her surgery last year. Anna has been having problems with her one big toe for about six weeks (since she went on a day trip to Washington, D.C., and walked a lot). The doctors did not address these issues (except to ask if she ever takes ibuprofen for the toe issue)---I think they were more concerned about the Remicade dose. (And maybe we're to accustomed to a pediatric rheumatologist whose goal was medicated remission.) Maybe we (Anna) should be asking what Dr. S's overall goal is for Anna's arthritis.<br />
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This all happened days ago, and I spent the next few days with hundreds of thoughts swimming through my head---about this medication tightrope we are walking, and wondering if Anna knows all of these details and implications of the medications and their side effects, etc. (I'm thinking she probably does, since she's heard me talk about them, and maybe she will have more to say on the matter when I keep quiet about it.) This is all probably the normal thoughts of a mom transitioning and handing over the medical reins.<br />
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ANYway . . . . Sunday rolled around, and even during the singing time of our worship service, I still had all of these thoughts and questions and concerns about Anna's appointment going through my brain. And then we sat as the offertory was played. "Be Still My Soul." Played by a substitute pianist, who didn't know that our regular pianist had played that song just last week (different arrangement). And this made the third time this song penetrated my brain and my soul within the past week---a friend had posted the lyrics on Facebook. When these situations happen, I feel like God is telling me to sit up and pay attention. "Be Still My Soul, the Lord is on thy side . . . . " <br />
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As we get ready to move Anna to the college, I know from past experience (having gone through this with two older siblings) that we will have a candlelight worship service after we move our first-year students into their dorms. My husband (who works at the college) once explained to me (when they first began this tradition), that it's a service where the purpose is to remind parents that God has been faithful in the past as we have raised our children to this point, and He will be faithful to them for the next four years in their college journey, so we can trust Him and trust our children and trust the college (and let them spread their wings and fly!). It's an awesome service! No matter what the future holds for Anna (with college, relationships, medications, disease, etc.), we know that "through every change, He [God] faithful will remain."<br />
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<span style="line-height: 1.6;">Be still my soul the Lord is on thy side</span></div>
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<span style="line-height: 1.6;">Bear patiently the cross of grief or pain</span></div>
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<span style="line-height: 1.6;">Leave to thy God to order and provide</span></div>
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<span style="line-height: 1.6;">In ev’ry change He faithful will remain</span></div>
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<span style="line-height: 1.6;">Be still my soul thy best thy heav’nly Friend</span></div>
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<span style="line-height: 1.6;">Through thorny ways leads to a joyful end</span></div>
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<span style="line-height: 1.6;">Be still my soul thy God doth undertake</span></div>
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<span style="line-height: 1.6;">To guide the future as He has the past</span></div>
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<span style="line-height: 1.6;">Thy hope thy confidence let nothing shake</span></div>
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<span style="line-height: 1.6;">All now mysterious shall be bright at last</span></div>
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<span style="line-height: 1.6;">Be still my soul the waves and winds still know</span></div>
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<span style="line-height: 1.6;">His voice who ruled them while He dwelt below</span></div>
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<div class="contributor" style="background-color: #fefefe; box-sizing: inherit; color: #717171; font-family: akagi_probook, HelveticaNeue-Light, "Helvetica Neue Light", "Helvetica Neue", Helvetica, Arial, "Lucida Grande", sans-serif; line-height: 1.6; margin-bottom: 0.5rem; padding: 0px; text-align: center; text-rendering: optimizeLegibility;">
<span style="font-size: xx-small;">Jane Laurie Borthwick | Jean Sibelius | Kathrina Amalia von Schlegel</span></div>
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<li style="box-sizing: inherit; margin: 0px; padding: 0px; text-align: center;"><span style="font-size: xx-small;">© Words: Public Domain</span></li>
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Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com1tag:blogger.com,1999:blog-18238382.post-57360184430824722272016-07-26T19:43:00.001-04:002016-07-26T19:43:03.205-04:00Shifting Gears, Transitions, and Distractions . . . .<div class="separator" style="clear: both; text-align: center;">
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We are truly shifting gears in this JA Journey, which we have been traveling now for 17+ years. I've mentioned before that Anna has been taking the reins lately. She is decisive, and one of her decisions was to say good-bye (along with a huge "thank you" and a hug) to her pediatric ophthalmologist. We saw him two weeks ago, and she told him then that she has decided to pare down to just one eye specialist, and she has chosen the retina specialist. Makes good sense, since the retina specialist has all the instruments she needs at the medical center to do what needs to be done as issues arise with Anna's eye. The pediatric ophthalmologist does not, as he is in private practice and has to send us to see someone at the medical center when the macular edema recurs. Anna thought this was also the perfect time, since she has aged out of pediatric rheumatology and will be meeting her adult rheumatologist in about two weeks.<br />
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Anna has also begun to keep her own calendar of appointments. This is especially important since she will be moving to her college campus in less than one month, and since she will be keeping better track of her class and activities schedule than I will. It's time for me to step back (believe me, this is not easy, especially since Anna is our last child to leave home!), but I feel like I'm making progress as a mom. (If some of you are praying about this for me, THANK YOU!!! I can feel your prayers as the Lord is shifting my emotions and attitudes and my worry as I continue to let go.) <br />
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Does this mean the end of the this blog? I don't think so. I know many who continue to search for stories to see what the future may hold for their child with Juvenile Arthritis and uveitis and TMJ issues. Since this is what I was searching for 17 years ago, I want to provide this for others who need it. I will continue to share as Anna moves forward. I don't yet know how we will fit college classes, doctor's appointments, Remicade infusions, etc. all together, but we won't know until we try it. Anna has scheduled her classes so that she has three mornings free. She worked with the Lancaster Cleft Palate Clinic to reschedule her team appointment (that's tricky---they only schedule team appointments two Tuesdays per month), so that she won't miss class. It will help that her college is just six miles from home, so she can still get to the local appointments and not necessarily have to wait for fall break or Thanksgiving or winter break.<br />
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As for an update: We believe that the Periocular injection (steroid into the back of the eye to treat macular edema which Anna received a month ago) is working. Two weeks ago, Anna had just a haze of protein, but no cells of inflammation in her left eye. "Yay! And finally!!!" Although her vision is not quite back to 20/20, the vision test results were much better than last month. So we believe that the swelling in the back of the eye (the macular edema) is receding. They decided to reduce the frequency of the Pred Forte drops, and she will see the retina specialist in about three weeks for another exam (and an OCT, which will show us a picture of the back of Anna's eye).<br />
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We did have a little distraction. Anna always has blood taken for labs prior to her Remicade infusion. The results showed some abnormalities, and I probably should not have researched what "smudge cells" indicate before hearing from her doctor. (Sometimes I check the results of her labs on the Health Portal system, especially when she's had some abnormalities in the past.) That was new, and the search results were worrisome to say the least! (Practice for me in calming myself down!) But her pediatric rheumatologist (he's still monitoring her until she sees the adult rheumatologist) ordered more labs, had them sent to pathology, and the results today showed that they are back to normal. What a relief, and thank the Lord! He thought that would be the case, since her other numbers were not way off base, but he wanted to be cautious and double check.Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com2tag:blogger.com,1999:blog-18238382.post-88607290865785024472016-06-21T19:55:00.003-04:002016-06-21T20:27:25.374-04:00Periocular Injection Today<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "trebuchet ms" , sans-serif;">When Anna was first diagnosed with uveitis (probably over 15 years ago---the years are started to mesh together), I remember reading and researching a LOT about treatment options. And there was a time (over 10 years ago) when her pediatric rheumatologist told me about another one of his patients who had a steroid injection straight in the eye in order to get some stubborn eye inflammation under control. At the time, I could hardly even think about such a procedure. I did ask her ophthalmologist about it then, but he was not a fan of the concept (the Intraocular pressures can rise to an unacceptable leven, and there is no way to go in and get the medication out). Besides that, he doesn't have the ability and necessary instruments to do such a procedure in his private practice. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">How can anyone even stand to get a needle into their eye? How could a parent even stand to be in the room while anyone did that to their child? Well, this morning, Anna did have a steroid injection into the back of her eye, and I was in the same room. (They didn't ask me if I wanted to be there, and what type of supportive parent would I be if I asked to be excused to the waiting room?) While I watched the prep (which took a lot longer than the actual injection---numbing the eye with anesthetic drops, and then a swab of anesthetic until Anna said that the eye no longer felt scratchy), I did not watch them (the doctor, who held the syringe, and the resident, who pushed the steroid into the eye) as they did the actual procedure. I closed my eyes and prayed for their hands to be steady.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Anna knew the risks. The ophthalmologist (Dr. M) reminded her of </span><span style="font-family: "trebuchet ms" , sans-serif;">them at our last visit with him, when we told him of the possibility if the macular edema was still present at our appointment today with the retina specialist. Dr. M would not have chosen this route. But Anna truly trusts the retina specialist, and she wanted to avoid oral Prednisone, which messed with her mind two years ago, even though it calmed down the macular edema. And this current macular edema has lasted for several weeks now. She's ready to have better vision in her left eye again. The retina specialist today assured Anna that if her pressure rises, we can counter that with different drops. About halfway through the prep, she asked Anna if she was okay (Anna was), and Dr. N. told her that if really wanted, we could stop, and reschedule it to be done "upstairs" and under sedation. (We were doing this in the clinic, without any sedation.) Anna was just ready to have it done and over with.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidZKIvgCaoph5o2GrNgwHYcyAO0bCOr1cpgRjWS93DrnBe6V_AEavt_0EtUvwXj4A3MmZUfRnrPgp_BSLQXc0fdICi9kfqDs_ORMU5jg2oeNkn-Tw5YVlMX42lgRXpKYh0EPXv_w/s1600/4U6A0317.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidZKIvgCaoph5o2GrNgwHYcyAO0bCOr1cpgRjWS93DrnBe6V_AEavt_0EtUvwXj4A3MmZUfRnrPgp_BSLQXc0fdICi9kfqDs_ORMU5jg2oeNkn-Tw5YVlMX42lgRXpKYh0EPXv_w/s400/4U6A0317.jpg" width="400" /></a><span style="font-family: "trebuchet ms" , sans-serif;">And the verse and song God has given us these past few days? Psalm 3:3 (see the picture at the top of this blog post). I was feeling the Lord being a shield around us today, giving us peace and a "let's do this attitude" instead of fear. I am so thankful for specialists like Dr. N. And I'm thankful that she sees adult patients as well as pediatric, so Anna can stick with her instead of "aging out" as she is doing with her pediatric rheumatologist, whom we greatly respect.</span><br />
<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-55981987714513876582016-05-27T15:24:00.002-04:002016-05-27T15:24:37.490-04:00In the Eye of the Storm . . . . ([God] remains in control . . . )<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfkqRS4PBsvzQmG5nZsSlrZtSkT7f42fKJOKYF2hHrqJ5QAU8utExG-6ym7uxhC39wnRmOP2qQyLbbgvtWL9AYNzNXF_wCGvzrgqc34IUEnzmqhHght7AmAd1RFdShdchRiTu4NQ/s1600/OCT+May+25+2016+with+info+blurred.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfkqRS4PBsvzQmG5nZsSlrZtSkT7f42fKJOKYF2hHrqJ5QAU8utExG-6ym7uxhC39wnRmOP2qQyLbbgvtWL9AYNzNXF_wCGvzrgqc34IUEnzmqhHght7AmAd1RFdShdchRiTu4NQ/s640/OCT+May+25+2016+with+info+blurred.jpg" width="464" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">OCT (picture of the back of Anna's eye in layman's terms) of Anna's left eye this past Wednesday</td></tr>
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Well, it's not as bad as it was in 2014, but the Macular Edema has returned in Anna's left eye. At least this time, we are already established with a Retina Specialist who has a calm but decisive manner and who seems to know exactly what she's doing. She increased Anna's Pred Forte eye drops and doesn't want to taper until this is under control. For our next appointment with her in June (four weeks), we have allowed 3-4 hours, just in case the retina specialist (Dr. N.) feels it necessary to do a Periocular steroid injection to stay ahead of the Macular Edema. (I'm learning new words, and although I did an Internet search to know how to spell it, I'm not quite ready to look at the images.) I used to not even want to think about an injection into the eye of one of my children, but at this point, I am okay with putting Anna in the hands of this specialist.<br />
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This news comes in the middle of a storm of activities and emotions, as Anna prepares to graduate from high school next week and move toward her future as an adult. There are a wide variety of emotions for us as parents (Anna being our third and last child to leave the nest.) And while we're busy, we're also eagerly anticipating all three of our children being together again next week, and seeing our daughter and son-in-law and grandson who live 12 hours away from us. We're also constantly thinking of a very dear friend of ours, who seems like family, who is not long for this world, having battled an aggressive cancer for the past 2 1/2 years (and grieving for her family). The Lord is speaking to me again through songs and Scriptures, as He often does in the tougher seasons of life. On our way home from Hershey on Wednesday, as we were thinking about and praying for our friend and her family and letting the news from the appointment sink in to our minds, the song in the video below was playing on the radio. I was thinking how appropriate these words are. This song has been playing in my head for the past few days.<br />
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In the eye of the storm<br />
You remain in control<br />
In the middle of the war, You guard my soul<br />
You alone are the anchor when the sails are torn<br />
Your love surrounds me in the eye of the storm.<br />
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(if you decide to listen to video, listen through to the end---they go A Capella, and it's awesome if you love music and are into that sort of thing--I am!)<br />
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<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-40660760554465591652016-05-19T23:01:00.000-04:002016-05-19T23:12:58.166-04:00Fix Our Eyes . . . . .<div class="separator" style="clear: both; text-align: center;">
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<span class="text Heb-12-1" id="en-NIV-30214" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;">"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run<span class="crossreference" data-cr="#cen-NIV-30214A" data-link="(<a href="#cen-NIV-30214A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> with perseverance<span class="crossreference" data-cr="#cen-NIV-30214B" data-link="(<a href="#cen-NIV-30214B" title="See cross-reference B">B</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> the race marked out for us,</span><span style="background-color: white; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;"> </span><span class="text Heb-12-2" id="en-NIV-30215" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;"><b>fixing our eyes</b> on Jesus,<span class="crossreference" data-cr="#cen-NIV-30215C" data-link="(<a href="#cen-NIV-30215C" title="See cross-reference C">C</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> the pioneer<span class="crossreference" data-cr="#cen-NIV-30215D" data-link="(<a href="#cen-NIV-30215D" title="See cross-reference D">D</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> and perfecter of faith. For the joy set before him he endured the cross,<span class="crossreference" data-cr="#cen-NIV-30215E" data-link="(<a href="#cen-NIV-30215E" title="See cross-reference E">E</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> scorning its shame,<span class="crossreference" data-cr="#cen-NIV-30215F" data-link="(<a href="#cen-NIV-30215F" title="See cross-reference F">F</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> and sat down at the right hand of the throne of God.<span class="crossreference" data-cr="#cen-NIV-30215G" data-link="(<a href="#cen-NIV-30215G" title="See cross-reference G">G</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span><span style="background-color: white; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;"> </span><span class="text Heb-12-3" id="en-NIV-30216" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;">Consider him who endured such opposition from sinners, so that you will not grow weary <span class="crossreference" data-cr="#cen-NIV-30216H" data-link="(<a href="#cen-NIV-30216H" title="See cross-reference H">H</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>and lose heart." Hebrews 12:1-3 NIV</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTt1OuzVc_CYHVwZn7_HsHctiAv97Y5kWNjf8tvtwwbusW1fpP7p5w7EpZ1gydNsqZ5MvZg1EutkpgfSojW4zIZ3sLh8oOU_R0Ll3fyEO9rVIgu3Z74WRO2x1zapSTCSRr2W4J-g/s1600/cross+edited.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTt1OuzVc_CYHVwZn7_HsHctiAv97Y5kWNjf8tvtwwbusW1fpP7p5w7EpZ1gydNsqZ5MvZg1EutkpgfSojW4zIZ3sLh8oOU_R0Ll3fyEO9rVIgu3Z74WRO2x1zapSTCSRr2W4J-g/s640/cross+edited.jpg" width="515" /></a></div>
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<span class="text Heb-12-3" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;">I've been hearing and seeing "Fix Your Eyes . . . ." quite a bit lately---in studying, in songs, in worship services, etc. I know what it means---we need to focus on Jesus. Know who He is, and how much He loves us, and remember all of that whenever we are in the midst of the hard things in life. As I was gathering my thoughts to update this blog, I realized that "Fix Your Eyes" is a great title for this post---not only for the spiritual meaning, but because Anna's eye (that left one) needs "fixed." </span><br />
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<span style="font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white; line-height: 24px;">Anna's left eye, this past Monday, was at a 2+ flare again. Two weeks ago it was down to trace cells. Sigh. Last time we had a flare like this (a month ago), her vision was still 20/20 in that eye. This time, the inflammation was affecting her vision in the left eye---mostly blurry. (We are SO thankful that the right eye remains clear of inflammation!) So we increased the number of daily Pred Forte eye drops, and increased her Remicade dose from 12 mg/kg to 15 mg/kg. There's still room to increase the Remicade again if we absolutely have to. It worked out on Monday that Anna was able to get the increased dose that afternoon. She had already been scheduled for an infusion, and her appointment with the ophthalmologist was two hours before the infusion. A flurry of phone calls and confirming with the infusion room nurse took care of everything. </span></span><br />
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<span style="font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;"><span style="line-height: 24px;">We go to see the retina specialist next week, and Anna will need an OCT (picture of the back of the inside of the eye) to see if the macular edema has returned. All of this in the midst of finishing up projects and studying for the final exams of high school, and "senior meetings" leading up to high school graduation. We do our best to run this race with perseverance--fixing our eyes on Jesus and the joy that is to come.</span></span></span><br />
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<span style="font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif;"><span style="background-color: white;"><span style="line-height: 24px;">One thing I wanted to share with all of you . . . . you hear my thoughts in every blog post, but you don't always hear Anna's perspective (her source of strength and her faith). I was designing her graduation announcements this evening, and there's a place for some text on the back of the card. I asked Anna what she wanted there, and she gave me a verse from the Bible. This is Anna's perspective on her life and journey:</span></span></span><br />
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<span class="text Ps-73-26" id="en-NLT-15023" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px; position: relative;">My health may fail, and my spirit may grow weak, </span><span class="indent-1" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;"><span class="text Ps-73-26" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">but God remains the strength of my heart; </span></span><span class="indent-1" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;"><span class="text Ps-73-26" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">he is mine forever. Psalm 73:26 (NLT)</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg490OFgc2CkIQhMvUxf8F7vL3rhyphenhyphenoyQ1furo-oUIf3L1eenosZA_ImGe9sCWfjqjcrJ_WrH9_HDdT5wZubFgNalsuF0Z4I8EqilM_rDd24wc9MRFlhAKhTRFYDkrjMxnBpqv3KYw/s1600/4U6A0017.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg490OFgc2CkIQhMvUxf8F7vL3rhyphenhyphenoyQ1furo-oUIf3L1eenosZA_ImGe9sCWfjqjcrJ_WrH9_HDdT5wZubFgNalsuF0Z4I8EqilM_rDd24wc9MRFlhAKhTRFYDkrjMxnBpqv3KYw/s400/4U6A0017.jpg" width="400" /></a></div>
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<span class="text Heb-12-3" style="background-color: white; box-sizing: border-box; font-family: "helvetica neue" , "verdana" , "helvetica" , "arial" , sans-serif; font-size: 16px; line-height: 24px;"><br /></span>Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com0tag:blogger.com,1999:blog-18238382.post-50655844108817558992016-05-02T22:33:00.001-04:002016-05-02T22:33:37.370-04:00It's that Eye Again . . . . Getting used to Bumps in the Road<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPTJxhF5gPPsf0SxMXwyQJT7uDRnP75sKNclrEFVoCjYRD1mI-_cT3RIfE9x5rwF8QjYq2v7ZvW7xK9GaOue50G4Fvt71ThBPSN5n1qV774mX_1ZDUYHJSzGF_Q1IlTtoyy5UQPQ/s1600/13087104_1209382275740611_1341138432355349135_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPTJxhF5gPPsf0SxMXwyQJT7uDRnP75sKNclrEFVoCjYRD1mI-_cT3RIfE9x5rwF8QjYq2v7ZvW7xK9GaOue50G4Fvt71ThBPSN5n1qV774mX_1ZDUYHJSzGF_Q1IlTtoyy5UQPQ/s400/13087104_1209382275740611_1341138432355349135_o.jpg" width="400" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">In a dream world, as we prepare for Anna to graduate from high school and move on to college and her adult life, we could hope and pray that we could set aside Juvenile Arthritis and Uveitis in the same way we are preparing to put her childhood in the past. But we don't live in a dream world, as reality reminds us. Two weeks ago and five days following Anna's last Remicade infusion, the pediatric ophthalmologist looked into Anna's left eye with the slit lamp and surprisingly found 2+ inflammation. And he said that he could tell by the exam that this wasn't a one-day flare; those cells had been present for probably at least a week. So we increased the Pred Forte drops to four times a day and went back for another eye exam a week later. Thankfully, one week of increased drops was enough to calm down the inflammation to just trace cells. We were able to decrease the drops again. Pressures were on the verge of being high (21 for both eyes), but the decrease in Pred Forte should help bring those back down.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We've also adjusted Anna's Remicade schedule. We had been stretching out the infusions to every five weeks, but I called and rescheduled the next two infusions so that she will receive the infusions every four weeks, as initially prescribed. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGMmqHq_-ZfnPmLRCmJHXHKbdLh2zR5Sj-XThzHf6soxIgL8p12kOLrgxkE8n8B_pdYPeJS3Ygs4dJBQrMl7bijNBJVaIH_zRKxPj1yqqAtEInZnyrwxTLoDC_oeNwfcseUuVDAA/s1600/May2016+edited.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGMmqHq_-ZfnPmLRCmJHXHKbdLh2zR5Sj-XThzHf6soxIgL8p12kOLrgxkE8n8B_pdYPeJS3Ygs4dJBQrMl7bijNBJVaIH_zRKxPj1yqqAtEInZnyrwxTLoDC_oeNwfcseUuVDAA/s320/May2016+edited.jpg" width="304" /></span></a></div>
<span style="font-family: Trebuchet MS, sans-serif;">Anna has just a few more weeks left in her high school experience. As we count down the days, we also have many, many events on the calendar (as you can see on the picture to the right, which is my actual calendar for May!---concerts, appointments, prom, family gatherings, etc. Sometimes these bumps in the journey (unexpected eye inflammation) can cause some fear, but I plan to be very intentional in the next few weeks to exhale and enjoy the present! Turning away from fear because our lives are in the hands of Jesus, who gifts us with each new day.</span><br />
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<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com1tag:blogger.com,1999:blog-18238382.post-40306362080255830752016-04-03T20:57:00.000-04:002016-04-03T20:57:10.605-04:00Let Me Dream, Let Me Dream for You . . . .<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;">Dream For You</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So come on, let Me dream, let Me dream for you</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I am strong when you're weak and I'll carry you</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So let go of your plan</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Be caught by My hand</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I'll show you what I can do</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">When I dream for you</span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;"><span style="font-size: x-small;">(Bridge)</span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I'm stronger than you think I am</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I'll take you farther than you think you can</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">You sing and call me great I Am, so take your stand</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">My child if you only knew</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">All the plans that I have for you</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Just trust me I will follow through</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">You can follow Me</span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif; font-size: xx-small;">Mark Hall | Matthew West</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: xx-small;">© 2014 Atlas Holdings (Admin. by Atlas Music Publishing)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: xx-small;">Highly Combustible Music (Admin. by Atlas Music Publishing)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: xx-small;">House of Story Music Publishing (Admin. by Atlas Music Publishing)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: xx-small;">My Refuge Music (Admin. by Capitol CMG Publishing)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; font-size: xx-small;">Be Essential Songs (Admin. by Essential Music Publishing LLC)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We continue in this year of transition, with Anna spending a good bit of time studying and finishing up her senior year of high school. For this second half of the school year, she has a slightly heavier course load (still taking one college class) and less study halls than the first half of the year (frankly, I loved the way it worked out, since that first half of the school year was right after jaw surgery, and she's pretty much recuperated from that trauma at this point). So that heavier class load sometimes means a whole lot of time at home in the evenings writing papers and reading, etc. She does squeeze in some time to read, and she takes part in a book club. She's looking for a job for the summer.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We still make trips to Hershey and Lancaster for appointments, but this month, we only have one trip to Hershey for an eye appointment, and another trip to Hershey for Remicade. The first week of May will be a busy one, though, with both a trip to Hershey and a trip to Lancaster on consecutive days. Anna's eyes have been clear these past many weeks (Thank the Lord!) Joints have been quiet (well, she hasn't mentioned any pain or stiffness lately, but she only really says anything if the pain or stiffness is severe, and that hasn't happened in a very long time).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Several weeks ago, Anna attended a preview day for accepted students at her college. Her field of interest is very competitive right now, with many young people interested in pursuing the career and not many job openings. As a mom, sometimes I think about the challenges my children face in life and how that will work out as they pursue their interests and careers. When I've thought about it and worry has crept in, the song quoted above starts playing through my head. One of those God-things. The Lord asks me to trust Him with the lives of my children. As they continue to follow Him, He has promised to direct their steps---He will take them farther than I think they can go! </span></div>
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<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com1tag:blogger.com,1999:blog-18238382.post-245707971485023082016-01-08T22:10:00.002-05:002016-01-08T22:10:56.801-05:00Quietly Confident . . . . . beginning a year of transition in Anna's JA Journey<div class="separator" style="clear: both; text-align: center;">
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The beginning of this new year of 2016 has already brought reflection as well as looking to the future. We've been on this journey a LONG time (diagnosed in 1999 when Anna was not quite two years old)! The uveitis has been the most stubborn; the joints have usually responded well to steroid injections. The TMJ involvement (discovered several years ago) was an unwelcome surprise, and the recent jaw reconstruction surgery was a major event for Anna and our family. After a few weeks of treatment for the recent flare of uveitis, her left eye is once again clear, and although Anna was concerned that some small changes in her vision signaled a recurrence of macular edema, an OCT (Optical Coherence Tomography, or imaging of the retina) showed that the back portion of her eye looks normal. (Praise the Lord!) Overall, Anna is doing well. (I hope that is good and hopeful news to JA parents who are trying to get a glimpse of what the future may hold for your children---I know that some children with Juvenile Arthritis have more pain and problems than Anna does, and others have had less issues.)<br />
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We have an end in sight for the braces---Anna is scheduled to get them off the first week of May. Now that's exciting! Just before prom and graduation!<br />
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Anna is a senior in high school, already taking college courses through the dual-enrollment program, and she is eager to enroll at Messiah College as a freshman this fall. Her current plan is to study Human Development and Family Studies, with a goal of becoming a Child Life Specialist at a Children's Hospital. (This JA Journey has been significant in Anna's developing interest and passion for this field of study.)<br />
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Graduating from high school and moving into "adulthood" does not mean that Anna gets to "graduate" from Juvenile Arthritis and uveitis. It does mean, however, that sometime in the summer, she will "graduate" from the pediatric rheumatology department where she has been seen (by the same doctor) since she was a toddler. There is definitely sadness with this transition, but the positive side of this is that because her rheumatologist knows Anna so well, he has a good idea of the right fit for an adult rheumatologist. He has a particular adult rheumatologist in mind for Anna. We've learned to trust his judgment about so much--we're going to trust him with this, as well.<br />
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A friend of mine was telling me about a video she recently saw. I watched it this evening, and thought that this is GOOD---going from fear to quiet confidence. This video was talking about a job situation, but I also think it can be a description for all aspects of life. When we first started on this JA journey, there was so much uncertainly and fear. (Sometimes, unexpected flares can be rather frightening, as well as changing medications, and new biologics, etc.) But watch this video (only 6 minutes!)---what if we aren't afraid? What if this journey has been designed specifically for us by God? He has walked beside us all along. He continues to walk with us. We can approach the future (with the changes that are coming) with confidence.<br />
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<br />Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com1tag:blogger.com,1999:blog-18238382.post-55470558211481798612015-12-14T23:18:00.000-05:002015-12-14T23:18:38.484-05:00The Unexpected Road . . . . .<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "Trebuchet MS",sans-serif;">We are on the rollercoaster again with this JA Journey. We were so happy to take the Pred Forte eye drops "off the table" for Anna before Thanksgiving--about 3-4 weeks ago. Anna has had clear eyes for several months now, and we were so hopeful that this good news would last for a long time. I do remember that she had clear eyes without drops for almost two years before Humira stopped working for her (in early 2014), and I was hoping that we could get to that point again.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Even though Anna's uveitis is usually asymptomatic, over the weekend, I noticed that Anna's left eye was really bloodshot. When I asked her about it (and started to think of everything that could cause this problem), Anna was telling me that her vision in that eye was different. We contacted the ophthalmologist early Monday morning and were thankful that they had some cancellations in their schedule and could squeeze in an appointment for Anna. The verdict: 2+ inflammation---in just 3-4 weeks without the Pred Forte eye drops (and no missed doses of Methotrexate or Remicade). Anna is back on the steroid eye drops, 4x daily for at least the next week, and he will see us again on Tuesday.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I feel like Sunday was the worst day---knowing something wasn't quite right, but needing to wait another day to call the doctor. Now we know the problem, and we have a plan. That's a positive.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">We still have so much to be thankful for. A bloodshot eye that made me ask Anna some questions. Cancellations at the doctor's office that made some space for Anna to be seen early this morning, so we didn't have to spend more hours wondering and worrying. I once heard someone challenge us to ask God to reveal Himself to us, because that's what He's all about---He really wants us to know Him---how much He loves and cares about us. In the middle of unexpected difficulties, we can still find some positives--we see evidence of Him working. He helps us work through the worry to come to a point of peace and calm. </span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">We always appreciate your prayers for Anna! </span>Tammy Zhttp://www.blogger.com/profile/06075778945434782066noreply@blogger.com1