tag:blogger.com,1999:blog-131737252024-03-07T18:41:33.440-06:00THE OWL'S SONGFinding wisdom, music, story,
and a prayer for the journey...Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.comBlogger1024125tag:blogger.com,1999:blog-13173725.post-86206306602614801242016-10-01T14:46:00.001-05:002022-01-25T10:20:51.611-06:00That "Damn Obamacare"<div>
Disclaimer: This post is not about really about Obama, nor about Clinton versus Trump, and not really about politics. </div>
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I am retired from the ministry, unlike when I started this blog. A few years ago a business colleague and I started our own small insurance business. She had seen "Obamacare" aka "The Affordable Care Act" on the horizon and had worked to learn what she could about what was coming--both good and bad. From previous employment, I had expertise in the Medicare side of things. We decided that I would handle the Medicare business and she would work with other types of health insurance.</div>
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It was work. No one knew us. We were small. We were opening our office on a tiny budget. Now, about five years later, I can say we are proud of what has transpired . We have learned a great deal. Our little company has grown, has a good reputation, and our success is starting to actually mean we earn some money. My daughter joined us a couple of years ago to provide office support, and last month we added a third agent and another office person. One of these days I will retire. I am 66 this year. I hoped to retire from ministry at about age 70. That didn't happen, but I can be thankful for what<i> has</i> happened. </div>
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Back to the title of this post. There is much I could say about "Obamacare." We <strike>rant</strike> talk about it every single day. I have seen people leave our office nearly in tears because finally they can afford health insurance. Or perhaps a pre-existing condition won't prevent them, or an ill child, from having healthcare coverage. Sometimes there have been hugs. I have also seen anger and frustration about the negative aspects of the "affordable" care act. </div>
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It has made insurance accessible and affordable for many middle-income people. There is simply no denying that. It has also had negative ramifications that have made insurance more expensive for others. No denying that either. The federal exchange, or "marketplace" is a bit of a debacle. Sometimes it works. Sometimes it is a bloated and baffling example of the mess that can happen when a big bureaucracy tries to be helpful. There are serious problems. I won't go into that here...not enough space. And this post really isn't about Obamacare (also called the "federal exchange" or "the insurance marketplace"). It is about something more important to me.</div>
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I have been appalled at the amount of finger pointing and name-calling--not to mention completely incorrect information--that we have encountered in the last few years. Yesterday I had an encounter that was a disturbing example of much that concerns me about America these days. Some details have been changed to maintain privacy, but the key details are intact.</div>
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I spoke with a person who had been receiving Medicaid, our taxpayer-funded national program of health coverage for low-income people, along with Medicare, our partly private, partly taxpayer-funded national program for aged or sometimes disabled, individuals. He is disabled, but had recently been able to return to working part-time. However, that meant his income went up and he lost his Medicaid coverage. He still has Medicare, but there are significant coverage gaps in the Medicare program, including no coverage for medications. </div>
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He was really not happy about losing Medicaid. There was lots of complaining about how "they" won't give a person a break, and so on. I did understand his frustration that working, even part-time, was causing significant problems. He was considering leaving his job so he could still keep healthcare coverage. Before our appointment, I spent several hours trying to come up with the the best, most affordable option for him.<br />
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I succeeded. So, at the last possible moment on the last possible day, we got coverage. I was at the office quite late in order to get this done, and I was happy that we had succeeded in working out coverage for a disabled person who would have been in serious difficulty if I had failed. Along they way, as we discussed plan details, there was a great deal more complaining about having to pay something towards his medical costs, followed by complaints about "those" people, who don't learn English, who use taxpayer money, who expect to have a "free ride." </div>
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As we were wrapping things up, I asked if he had any further questions. "Yes," he said with a frown. "As a matter of fact, I do." He pointed at his plan materials. "What does this insurance you signed me up for have to do with that damn Obamacare?" I reminded him that he, not I, had signed the application, and I assured him that Medicare insurance plans are not connected with "Obamacare insurance."</div>
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"Oh, good," he said, leaning back in his chair, and crossing his arms "I sure hope Trump wins this election." I stood up, and did not comment one way or another about the election. But my customer wasn't done. "I will vote for Donald Trump for one reason. He will get rid of that damn Obamacare. There are too many people living off of the government." </div>
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I bit my tongue and kept my mouth shut. I wish I could say this conversation was unusual. </div>
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Don't misunderstand. I do not mind that my dollars, and yours, if you live in the USA, are quite literally keeping him from serious illness and likely painful death. What keeps banging around in my head was his attitude of entitlement--as long as it was him who benefitted and not "those people," and his complaints about needing a break, and what appeared to be his complete lack of gratitude that I was working late to make sure he had access to medical care. He never smiled. He did not shake my hand. He did not say thank you. He did not seem relieved (I sure was) that we'd solved his serious problem in a reasonable way. </div>
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That damn Obamacare. But don't take away MY federal benefits. It's those "others." </div>
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We have many serious problems in the United States of America. I was born in 1950 and I've lived through some very tumultuous times. I, along with many others, think we are headed in a dangerous direction. I want America to be great. </div>
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I also want Americans to acknowledge how fortunate, and how blessed we are. And I think one of the biggest problems we have is a serious lack of gratitude and an astonishing propensity to blame, to point fingers and to call names. Names like "libtard," or RINO, or fag or thug or Nazis, or "f*&^ing Liberals" or"stupid Evangelicals" or other names so obscene I won't type them. You haven't heard or read such names? Spend just a few minutes on social media.</div>
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If you are grateful for the Affordable Care Act, I get it. If you hate the Affordable Care Act, I understand that too! <br />
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If you are deeply concerned about many things in our nation, I stand with you in being concerned and sometimes horrified. But complaining and blaming and calling names and pointing at the other guy never accomplished one good thing. </div>
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Much more important than whether Obamacare stays or goes, or (my hope) gets a major overhaul, or whether a Republican or a Democrat or an Independent is in the White House, or who is appointed to the Supreme Court, or elected to Congress, is you and me and our attitudes. If we are going to solve our problems, we must stop calling names and pointing fingers and blaming. It is up to us. </div>
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Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com4tag:blogger.com,1999:blog-13173725.post-27799617950681192672015-07-19T09:32:00.002-05:002015-07-21T07:50:03.207-05:00Leaving HomeLater this week the movers will arrive to load up our stuff and take it to a new place. We have lived at our current address (a pleasant ranch-style house on Pleasant Avenue) for nearly 15 years. <br />
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We moved here because I was the pastor of a small church in town. There are many posts on this blog about my life as pastor of the place once known as Jubilee Assembly of God. When I arrived, Jubilee AG was a place with an extraordinarily difficult history and had already been a struggling congregation for many decades. There were at least two points in its life when it probably should have closed.<br />
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Still, I arrived with a large amount of hope and a firmly-held belief that things were going to turn around. How hard could it be to genuinely love people, preach reasonably good sermons, be honest and transparent and find ways to be a blessing in our small town?<br />
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While I will always love the people I met here, and while I affirm that God was often present in some wonderful ways, things did not turn around in any sort of permanent sense. We grew. We shrank. We grew. We shrank. After ten years of trying, I resigned. Even now, more than five years later, typing those words makes my heart hurt.<br />
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I had stayed longer than any pastor who had been there, except the founding one. After me, Jubilee had an interim pastor and then two more pastors and a second name change before finally closing its doors a while back.<br />
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I have avoided driving past the church building for quite a while now. There is going to be a "restart" that will be spearheaded by a large church about 20 miles away. I hear it will begin this fall. Last week I drove by. There was a pile of stuff out by the trash--I think maybe cupboards, and a man was mowing the overgrown lawn. I'm glad something may still happen there. I wish them the best. <br />
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Why we stayed in this town for five years after I no longer served the church is a complicated story. But now it is time to go. If you have seen my neglected little blog lately you know that my husband, Ken, has been in poor health for about three years. I thought a condo or senior apartment might be suitable, but Ken hated the idea (truth be told, I did as well) but his days of shoveling snow and lawn care are behind him. We are moving to a large, two-family home south of here. Our daughter, Kristina, son in law,Daryl, and granddaughter, Trinity will live upstairs in a nice apartment. Ken and I will live downstairs. It is a beautiful old house with lots of character.<br />
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The movers are coming in three days, and the house is mostly packed up. I still have quite a bit to do, but this morning I sat out back with a cup of coffee and enjoyed my home. The house is nothing special. As I said, it is a pleasant ranch house. It has always seemed a bit small--mostly because there was nearly always some extra family living in it. I won't particularly miss it. However, I will certainly miss our one-third acre yard. <br />
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Right now, our tree-filled property is lush and and lovely. We have a nice little deck out back. In the long, grey days of winter I look out the kitchen window at piles of snow and I long for warmer days when I can sit in shaded seclusion.<br />
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This morning is beautiful. It is supposed to be hot later, but right now it is pleasant and a breeze is blowing. I made coffee and went to "sit a spell" as my Texas-born mother used to say.<br />
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My elderly mother moved in with us about the time we moved to this place. She was lonely, and it was hard to adjust from living in the south to living in the north. She never really got over being homesick, and Wisconsin's harsh winters were difficult. One thing she did love about Wisconsin was how green it is in summer. We used to have a covered swing on the back deck, and she spent many hours there. She also spent a considerable amount of time pulling weeds! This morning I could almost see her in her jeans, striped cotton shirt (she pronounced it "stripe-ed") and large straw hat, sitting out near bushes on our fence line happily pulling up my poppies. Poppies really do look like weeds until they put out flowers...I never told her.<br />
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My relationship with my mother was always complicated and usually strained. I loved her very much though, and I was sad to see dementia take an increasing toll. A friend from the church became her patient companion for a while (thank you, Laurie), and then a stroke caused me to make the painful decision that a nursing home was needed. She spent two years there before she passed away. They were difficult years, made somewhat easier by an excellent CNA who knew her from church and loved her dearly (thank you, Kristen) and visits from a friend (thank you, Pat) who loved her like family.<br />
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Not long after my mother died, Ken's disabled brother, Kevin moved here from California to live with us. Kevin lived here for five years before moving to an assisted living place in Sheboygan for several months before his death. This morning I closed my eyes and listened to the soft cooing of mourning doves and the trill of a cardinal singing from the top of our large birch tree. Kevin used to comment a lot about the number of birds we had.<br />
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Taking a sip from my cup, I smiled thinking of sitting outside next to Kevin in his wheelchair, drinking coffee on a Saturday morning while Ken was still asleep. Kevin was a character--and Kevin had "issues" and it was not easy having him here. I am glad we did though, and happy that he knew, at the end of his too-short and rather tragic life, that he was loved and valued. How he enjoyed being part of a family. He adored his grandniece, Trinity. And I can still see him waving at little Noah, our second grandchild, and saying "Hi, Baby!" because he had a hard time remembering his name. I will always miss Kevin. <br />
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Kris, Daryl and Trinity moved in when Kevin moved out. It has been crowded, but we made it work. Now we move on to what will likely be our last house, and a new chapter of life. Part of me looks forward to it, and part of me fears it. There are lots of unknowns and things to be concerned about. But for this morning I sat on the sun-dappled deck and sipped coffee and remembered. <br />
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I thought of my mother and of Kevin, of course. But I also thought of my friend Honey sitting in the rocker in my living room and praying for the church and for me. I thought of many conversations in the back-deck swing with Pat as we pondered the meaning of life and talked about family and read scripture and prayed. I thought of beautiful Tara sitting on the lawn with me and sharing hopes and fears. A few years back I travelled to Tennessee to conduct Tara's wedding. She is now in Florida and her husband is starting the process to become a missionary pilot. I thought of a birthday party we had in the back yard, celebrating my 60th and Kevin's 50th year of life. I thought of Kelly and John and Steve and Donna and Gene and so many others who have been on my back deck and shared a slice of life here. <br />
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With deep sadness, I remembered my sister, Darlaine sitting in that same deck swing, beautiful blue eyes filled with sorrow, holding her husband's hand as we talked about her Alzheimer's diagnosis. I thought of my other sister, Paulette, visiting me and our mother as things began to deteriorate. I remembered our shared sadness and shock at our mother's anger and paranoia.<br />
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I thought of David and Mark painting Kevin's room. I thought of Thanksgivings and Christmastimes and how glad we were when Keith, Ken's youngest brother came to see us here. I thought of sitting with Joshua, our son, as together we pondered the implications of his approaching role as daddy.<br />
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Living in this town has been somewhat difficult for me. There have been plenty of perplexing and even frightening moments at this address. I have walked the floor, cried, prayed, and sometimes fumed. I have wondered if Ken was going to make it. I have wondered who I am and how I can go on. I have felt exuberance and hope and I have felt like a pathetic failure. I have answered the middle-of-the-night phone calls with my heart pounding.<br />
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But there has also been much discovery and growth and love and laughter and joy. <br />
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I have moved many times since marrying Ken. We lived in military housing, couples housing as we studied for the ministry, parsonages. When the movers come on Thursday it will be move number 15. I hate packing, loading, unloading, the mess. I have never gotten better at it, even after 15 opportunities to improve. <br />
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It is good to have something different ahead and I'm more than ready to say good bye to my home and hello to a new one. It is time. Past time, probably.<br />
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But leaving a home is always a little nostalgic. Today I took time to say good bye.<br />
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<br />Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com3tag:blogger.com,1999:blog-13173725.post-87194861304807727892015-06-19T14:12:00.003-05:002015-06-21T09:01:07.515-05:00Red and Yellow, Black and White?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtBBbL5srD5FPAn7BNOVXHLAIzM6VXwqgWGvAqXGqA3Oypm4uE5zDFydFw_cor7SzpP7dvcucrWgeD68oipsaI4yn7CGC7NQKXziSUmjV9QySci73z1gmoV9gIrUiWGqMBHHdXlg/s1600/Boquet.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/AVvXsEgtBBbL5srD5FPAn7BNOVXHLAIzM6VXwqgWGvAqXGqA3Oypm4uE5zDFydFw_cor7SzpP7dvcucrWgeD68oipsaI4yn7CGC7NQKXziSUmjV9QySci73z1gmoV9gIrUiWGqMBHHdXlg/s320/Boquet.jpg" width="210" /></a>I haven't blogged in a long time. It has been hard to find a voice or anything worth saying in the current sorrow, doubt, anger and weariness that seems to characterize my life at present. <br />
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It has been a long time since I preached a sermon. <br />
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It has been a long time since I felt anything stirring in my heart that needed sharing. Right now, in the aftermath of the news about precious brothers and sisters being murdered while at prayer, I am longing to be standing behind a pulpit this Sunday. So much is pounding in my heart that I want to share. <br />
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But if I am truthful, I do not have the energy to attempt to be profound. <br />
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Truthfully, I fear that this blog post will sound trite, but somehow I need to speak, and I am struggling to say something difficult, so please bear with me.<br />
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Something my close friends and family know about me is that I really like variety. Look closely at my belongings and you will see it in what I choose in clothing, in books, in music, in food, in flowers. <br />
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When I'm eating Mexican food I don't pretend it is just the same as Thai food. Both are delicious. I don't pretend not to hear the differences between classical, jazz, rock or doo wop. I like them all. Variety keeps life from being boring. My favorite bouquet is not a dozen roses. Not a bunch of daises...etc. My favorite <em>flower </em>is the daffodil, but my favorite <em>arrangement </em>is a mass of different shapes and colors. I don't pretend not to see the differences between the rose, the lily, the carnation and the daffodil. I enjoy the differences. <br />
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Don't say you are "color blind" or something similar. We don't need to pretend we don't <em>see</em> racial and/or cultural differences. But maybe, like mature people can do with food, flowers, music....we can <i>celebrate </i>variety and diversity in the human family instead of avoiding it or being frightened or threatened by it. We can affirm that differences in skin color, accents, hair type, even names, are superficial, temporary and, at best, can add flavor and joy to life. <br />
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Yes, I said it might sound trite. But if we can start with a seemingly small thing--might it grow into something larger and stronger?<br />
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Remember the song some of us learned in our earliest days in church..."Red and yellow, black and white...they are precious in His sight...." Such a trite little song. <br />
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Might people be a sort of sacred bouquet?<br />
<br />Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com1tag:blogger.com,1999:blog-13173725.post-55460525273643090242014-09-18T13:25:00.000-05:002014-09-18T13:25:54.102-05:00Aletheia Praise Night at the PrisonLast night was the monthly "<span class="blsp-spelling-error" id="SPELLING_ERROR_0">Aletheia</span> praise night" at prison.<br />
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<em><span class="blsp-spelling-error" id="SPELLING_ERROR_1">Aletheia</span> </em>means "the truth that is revealed" and is the name of a weekly Bible study at the prison where my husband is a chaplain. It was given that name many years ago by a chaplain who encouraged inmates to be seekers of God's truth. The gathering is unique for this prison in that some inmates are given a <strike>leadership</strike> helping role. After the chaplain gives everyone a sheet with the topic/scriptures/questions for the evening, volunteers and an inmate helper guide discussion in several small groups. This is not the only Bible study opportunity, but it is the most well-attended one and includes both Protestants and Catholics and both English and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">Spanish</span> speakers.<br />
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<span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">Aletheia</span> Bible Study has continued mostly with volunteers from Reformed churches who have been coming in for years. And I mean <em>many years</em>, long before my husband arrived, and he has been the chaplain there for close to 20 years. Some of these dear people are in their late 80s or even their 90s.<br />
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The chapel is not air conditioned. It has tiny windows. The back wall of the chapel (an attractive building with singularly poor design) is glass and faces west. This means that in the summer months the chapel becomes an oven. It is HOT in there,<br />
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I don't usually attend the Bible study nights, but I do occasionally show up to sing at these once-a-month evenings of music, poems, testimonies and rap. As I've noted before in posts about prison, the most challenging <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">individuals</span> to deal with are usually not the prisoners but are the gatehouse guards--the guys who decide whether one comes in or stays out. This is a position of quasi power, and for some individuals that is not at all a good thing. <br />
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I went to prison last night. The guards included "Mr. Grump," an older man with a perpetual frown and a constant bad attitude, and someone I'd never encountered before. Many of the gatehouse staff know I'm the chaplain's wife, but he did not. I'll call him "Mr. Unknown." I'll use MG and MU for the two guards, and ME for...uh...me.<br />
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AT THE GATEHOUSE<br />
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I found a parking space and entered the gatehouse, just outside the razor wire fencing. I was the first volunteer to arrive. Mr. Unknown greeted me by swearing and then added, not unkindly "What are you doing here, lady? Do you know what a bad day it is to be in the chapel? Do you know that it is at least 110 degrees in there?"<br />
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Me: "Yes." I smile. "I'll be okay."<br />
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MG: <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Harumph</span>! No eye contact, just the grunt.<br />
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MU: "I can tell you there is no way in *&% that I'd be in that chapel today. If I were you I would have found something else important to do, or pretended to forget or something." Head shake.<br />
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MG: "License." He's never one to use two words if one will do. He has seen me dozens of times and knows who I am. He always acts like he has never seen me before. I hand it over, with a big smile and a "How are you tonight?" He does not respond and he does not look at me or at my driver's license either. He just pushes it back on the counter.<br />
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MU: "There's no way anybody but you is showing up on a day like today. You are probably gonna be the only volunteer tonight. I bet the inmates won't come either. I mean, it's hot in the housing units, but not as hot as that *&^% chapel. I bet no one is over there. Are you sure the chaplain even came to work there today?"<br />
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This conversation is going on as I remove my watch, glasses and belt and proceed through the metal detector. I don't say much. MG says nothing. <br />
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MU continues: "Do you know you are gonna sweat buckets in that sauna? I hope you don't pass out."<br />
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Me: "I'll just pretend I'm at a spa sauna! I'll probably lose five pounds! It'll be great." SMILE<br />
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MG:<em> Snort</em><br />
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MU: . "If I'm gonna voluntarily sweat it'll be for something important. Nothing important about tonight at that sweatbox of a chapel...."<br />
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Me: Actually, being at the chapel does me a lot of good. Probably more than a spa.<br />
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MU: looks at me like he just stepped in dog <span class="blsp-spelling-error" id="SPELLING_ERROR_6">doo</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_7">doo. </span><br />
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Right about that time five volunteers show up. Four of them are 80+. So much for me being the only fool to attend chapel, but there is no comment from MU. MG checks them in and they pass through the metal detector. To their credit, MG and MU were <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">quick and</span> efficient and made no <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">difficulties</span>. They were, in a stiff way, kind to the old people.<br />
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MU: "Do you know it has gotta be over 110 in that chapel, folks? Maybe 120?! Are you sure you don't wanna go back home?"<br />
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AT THE CHAPEL<br />
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The sun blazes in. The lights are off. Two fans blow the hot air around. The guitarists are tuning up. One man, a long-time guest of the prison system who had formerly sported a long pony tail has a buzz cut. I ask him about his hair and he tells me that he grew it for "<a href="http://www.charityguide.org/volunteer/fifteen/locks-of-love.htm">Locks of Love."</a><br />
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Many guys greet me. One has the most beautiful <span class="blsp-spelling-error" id="SPELLING_ERROR_10">smile</span> I may have ever seen, and he says as he shakes my hand, "We heard you resigned your church. I know you have prayed for me, and now I'm praying for you, sister. You know we love you and pray for you, right? I know God has something wonderful for you. You know you are always gonna be 'Pastor don't you, Miz Chaplain G.? Don't you be discouraged."<br />
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The evening begins with the Gospel Choir, who sing the best version of "Blessed Be Your Name" that I have ever heard (the newer praise chorus, not the old hymn). As they sang, "You give and take away" my eyes filled with tears. <br />
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Next the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">Spanish</span> Choir sings. What they lack in skill they make up for with enthusiasm. One of the Hispanic guys shares a testimony and says this is his last Praise Night because he is leaving the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">institution</span>. There is loud applause. He says he is happy tonight, not just to be going home but to share in praise to God with his brothers who have blessed and encouraged him. Not a churchgoer on "the outside," he came to chapel at the urging of a friend. He stayed and found God, he says. More loud applause.<br />
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I sing and then next up is Bob. Bob is a frail 89 or 90, one of those volunteers who has been coming in for a long time. He smiles broadly as he says he learned to sing hymns as his mother played their old piano. He sings an<em> <span class="blsp-spelling-error" id="SPELLING_ERROR_13">a capella</span></em> version of "I Love to Tell the Story." He is seated to a standing ovation. What a blessing to these inmates that an elderly white man from a small town has been ministering to mostly black guys from the inner city, and doing it nearly every week for decades.<br />
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And this time, doing it in a chapel where all were sweltering.<br />
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We shake hands and wish God' s blessings on the men as they depart.<br />
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AT THE GATEHOUSE AGAIN<br />
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MG is completely silent and manages, as always to make no eye conact as he checks our hands for the stamp that says we are not inmates. :-)<br />
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MU: "You all survived! It was hot as blazes in <span class="blsp-spelling-corrected" id="SPELLING_ERROR_14">there</span>, wasn't it? I warned you. No way I'd have been in that chapel tonight. Go home to your air conditioning!"<br />
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Bob: "Yeah, it sure was hot. I think it is a disgrace that the chapel is not air conditioned, and you can tell someone I said so! We sure had a great time praising the Lord though."<br />
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MG: Stares. (Yes, he actually looked at us.)<br />
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MU: "I hope the inmates appreciated it. Was anyone there? Bet not many showed up." Smirks.<br />
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Me: "Oh, they came. They always show up for <span class="blsp-spelling-error" id="SPELLING_ERROR_15">Aletheia</span> Praise Night."<br />
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I think that perhaps a little seed was planted in <span class="blsp-spelling-error" id="SPELLING_ERROR_16">MU's</span> heart. My husband likes him, says he has a good heart, and was surprised to hear of his comments. Will you say a prayer for him today, and MG as well?Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com12tag:blogger.com,1999:blog-13173725.post-17602358163949497412014-08-31T16:51:00.001-05:002014-09-15T13:36:56.369-05:00Ken's Ordeal #17: No More Tests to DoIn the last post with the tag "Ken's Ordeal" I said that Ken was waiting for a brain MRI and to hear the results of many hours of neurological and psychological tests. There were delays, but finally the MRI was done and we returned to the VA for the results. The MRI reveals some abnormalities, but nothing immediately alarming. There may be frontal lobe damage from many severe episodes of hypoglycemia (low blood sugar), thanks to the pheochromocytoma. We were told that there is really no way to know. <br />
<br />
We were also told that there are no more diagnostic tests to do.<br />
<br />
The psychological tests revealed some deficits in cognitive function, especially for things that required quick responses or multitasking. Otherwise, his cognitive function is normal, and his IQ is still mostly in the above-average to superior range. <br />
<br />
His psychological profile was not as positive. He is depressed (of course) and there are other things that I do not want to post about. Some may be the long-delayed result of much abuse in his childhood. <br />
<br />
The rheumatologist does think that Ken had that droid-sounding disease, RS3PE, but that it was connected to the tumor and he no longer has it. While his extreme pain remains, there is no more hand swelling. On the contrary, his hands show a distirbing amount of muscle deterioration. There is no real explanation forthcoming for the weight loss, continued exhaustion, or any of the other symptoms. They are recommending he meets with a psychiatrist who specializes in helping people deal with severe, chronic pain. The hope is to reduce the need for narcotic medications. If that can happen, his mental function should improve too.<br />
<br />
I keep thinking of T.S. Elliot's poem "The Hollow Men." It is a poem I greatly dislike, especially the final lines.<br />
<br />
<em>This is the way the world ends<br />This is the way the world ends<br />This is the way the world ends<br />Not with a bang but a whimper</em>.<br />
<br />
But this feels like that. An anticlimax. We have been searching for a diagnosis for a long time now. Ken has been noticeably ill for about three years. When the rare adrenal tumor, a pheochromocytoma, was diagnosed, we thought that at last we had an answer. Partially, we did. Looking back, we know that the pheo was likely present, wreaking havoc, for decades. After it was removed, along with the adrenal gland it had invaded, many of Ken's symptoms were reduced or gone. His blood sugars are easily controlled with minimal insulin. His blood pressure is on the low side. There are no more "episodes."<br />
<br />
I will always think the pheochromocytoma was due to the toxic water situation at Camp Lejeune. We will never know, of course.<br />
<br />
However, many other mysterious symptoms remain. Two years of tests at many medical facilities, including the Mayo Clinic, have yielded limited answers.<br />
<br />
Ken has aged many years in the last three. He has lost a lot of hair, his shoulders are stooped, he is thin and his muscles are atrophied, he walks unsteadily and slowly, is nearly always exhausted, depressed, and in chronic severe pain. There are some other mental and physical symptoms I do not want to write about. <br />
<br />
Recently I had a conversation with an acquaintance who hadn't seen Ken in some time. She encountered him in a local store, and later she told me, "I did not recognize him. I can't believe the change. I wasn't sure if I should speak to him and was thinking, 'Can that man be Ken?' -- and then I recognized his hat."<br />
<br />
So...we now are faced with answers that are not much of an answer. And we will need, evidently, to find way to deal with the new normal.<br />
<br />
I may not write about this again. I'm not sure, but Ken asked me to do so, believing there would be answers. As for now, there seems little point in continuing.<br />
<br />
PS About the pheochromocytoma<br />
Just in case you may read this and find yourself with the same symptoms, Ken really was a classic case. When, AFTER the tumor was accidentally discovered, I did some research, I saw how Ken had experienced all the typical warning signs. Pheos are very rare, "one in a million" we were told. But someone, particularly his endocrinologist, should have known. Symptoms were: unexplained weight loss, uncontrolled blood sugar highs and lows (that had no reasonable explanation), "episodes" of faintness, heart palpitations, and light-headedness. Also high blood pressure that was not well controlled, even with <em>three</em> medications. In the last months, episodes of faintness and heart symptoms also included a pounding headache and discomfort that travelled from Ken's feet to his head, or vice versa. On the day he was finally admitted to the hospital he shook so badly he could hardly stand. It was almost like a seizure. It would likely have soon been fatal because the flood of adrenaline and other hormones would have caused heart attack and/or stroke. It may be rare, but if this sounds familiar, make sure someone does a CT kidney scan.Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com15tag:blogger.com,1999:blog-13173725.post-26619204114289401002014-08-26T19:47:00.002-05:002016-10-02T11:53:38.919-05:00The Blue Shard<span style="font-family: "georgia" , "times new roman" , serif;">I walked in the city<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">On a sidewalk <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">No one near.<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Strangely lonely, <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"> Empty city.<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "georgia" , "times new roman" , serif;">In the gutter, <o:p></o:p></span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">A glint of sunshine. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">I stopped, </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Looked.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "georgia" , "times new roman" , serif;">Vivid with color<o:p></o:p></span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">A large shard of glass, <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Cobalt blue, shot through <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">With streaks of scarlet,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Gold, and purple.<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "georgia" , "times new roman" , serif;">Just a sharp sliver… <o:p></o:p></span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">Of... <i style="mso-bidi-font-style: normal;">something.<o:p></o:p></i></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Thick on one side, <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Thin on another,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Sun bright on its curve.<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Had this glass,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Been a plate? <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Or a cup?<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Graceful vase?<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "georgia" , "times new roman" , serif;">I stepped into the gutter,<o:p></o:p></span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">Stooped down to touch the surface,</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Half afraid, <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Half admiring, </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Of the arrowed, slivered remnant<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<div class="MsoNoSpacing" style="margin: 0in 0in 0pt;">
<span style="font-family: "georgia" , "times new roman" , serif;">Something once complete.<o:p></o:p></span></div>
<span style="font-family: "georgia" , "times new roman" , serif;">Covered with cracks,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Some ridged and defined, <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Some fine as a web,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Every part. <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">How came it? <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Who made it? <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">For what purpose?<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">This once-lovely thing,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Now a shard?</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Slivered, <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Cracked,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">In the street.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Like me.</span><br />
<br />
<span style="font-family: "georgia" , "times new roman" , serif;">Carefully, <o:p></o:p></span><br />
<o:p><span style="font-family: "georgia" , "times new roman" , serif;">Minding fingers,</span></o:p><br />
<span style="font-family: "georgia" , "times new roman" , serif;">I picked up the glass and<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Held it to the light.<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">A once lovely thing, </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Made for…something,</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Its network of cracks caught the light,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">I thought it sad to leave it,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">I should put it in a fishbowl, <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">On a window, </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">Or a shelf...or...</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">As I sat on the curb to consider,<o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">I placed it back <o:p></o:p></span><br />
<span style="font-family: "georgia" , "times new roman" , serif;">On the pavement, </span><br />
And the shard crumbled to slivers.Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com2tag:blogger.com,1999:blog-13173725.post-42172293063748234622014-07-25T09:41:00.000-05:002014-07-25T09:41:50.441-05:00Friday Five: The Sound of Muzak (tm)I have not played the Friday Five for a very long time. Today is the day, since I'm home from work. Over at Rev Gal Blog Pals, Deb has this to say:<br />
<br />
Recently, we got some Indian take-out food. While we were paying for our order, we heard a “Bollywood” version of “My Favorite Things.” We almost missed it because music is so much a part of our lives that we can ignore it!<br />
<br />
Since then, I’ve been noticing some of the background music in my world. Sometimes it’s the busker at the Metro station, playing away for some quarters. Sometimes it’s the usual “oldies” station, or the “Mix” station (“the BEST of yesterday and today!!!”). And sometimes it is completely random, like that Bollywood moment…<br />
<blockquote>
<div style="text-align: left;">
<strong>SOooo let’s talk background music this week for our Friday Five.</strong></div>
</blockquote>
<strong>1. At the office:</strong> <strong>If you have a choice, do you turn it up, turn it off, or drown it out with headphones? </strong><br />
It depends on what I'm doing. If I really need to concentrate, sometimes music gets irritating. In general though, I turn it up.<br />
<br />
<strong>2. At the grocery store or mall:</strong> <strong>What song (or genre of music) makes you want to hurl? Or throw something?</strong><br />
Genre: Rap. If there is one thing I dislike, music wise, it is repetitive sounds over and over and over and over and over and over and over. But you already figured out I HATE techno, but that usually isn't heard in grocery stores. As for a song I never need to hear again, "The Pina Colada Song" might just top the list.<br />
<strong></strong><br />
<strong>3. If you were going to create a “perfect playlist”, who are the artists (or songs/pieces) that you would include?</strong><br />
This is very hard because I love all kinds of music. It would depend on my mood of the day, but somewhere in there I'd have Mozart, Bach, Debussy, The Iron Butterfly, The Beatles, Ian and Sylvia, Joan Baez, Bob Dylan, Coldplay, Dave Matthews Band, Simply Red, Louis Armstrong, Jason Upton, Casting Crowns, Eric Clapton (unplugged), B.B. King, Fleetwood Mac, Aretha Franklin, maybe a little Who, Stevie Wonder, Michael Jackson, Cherry Poppin' Daddies, Fish, Straight No Chaser....oh....it is a looooong playlist.<br />
<strong></strong><br />
<strong>4. Have you ever tried using recorded music in worship? If so, what was your plan, and how did it go over?</strong><br />
At my last pastorate, there was no worship team when I arrived. We sang to CDs. Many people were used to it because it had been the norm for a while. I disliked it intensely, but you do what you gotta do! One of my first goals was to get some real singers and musicians together. As for using a special song, I did this often. Sometimes it was a secular song, but always with a specific purpose. I recall, "All We Need is Love" from the Beatles and "The Times They Are a Changin' from Dylan and once something from Harry Connick Jr. I think it went over fine. I often used a recording of a particularly nice communion song--"Come to the Table"--and it was beautiful.<br />
<br />
<strong>5. When is the earliest you’ve heard Christmas music in the grocery store or mall?</strong><br />
August. It was at Kohls. I was so irritated I refused to shop at Kohls till the Holidays were past.<br />
<br />
<strong>BONUS: </strong>“Weird Al Yankovich” has been releasing a stream of his parody music videos lately. Among my favorites: “Because I’m Tacky” <span class="wp-smiley emoji emoji-smile" title=":)">:)</span> If Weird Al was going to do a music video of your life, or a recent experience, what song/hymn/musical would the parody be based on?<br />
I LOVE Weird Al. I think it would be....hmmmm....."An American Tune" from Paul Simon. Here is a clip.<br />
<br />
http://youtu.be/AE3kKUEY5WU<br />
<br />
Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com3tag:blogger.com,1999:blog-13173725.post-38030508230398929372014-07-12T12:17:00.000-05:002015-08-30T06:43:35.137-05:00The Story of the Blue Countertops<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">The story of the blue counters begins with a dream that
came at a terrible time in our lives.<span style="mso-spacerun: yes;">
</span>While this story is not about that time, I share a little of it so you
understand--and so I don’t forget--why the dream was important.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Ken and I were struggling with the sudden death of a big plan, one that we had cherished for years and believed was God-given.<span style="mso-spacerun: yes;"> </span>Ken had spent nine years in the US Marine
Corps as a COBOL computer programmer and systems analyst.<span style="mso-spacerun: yes;"> </span>This was in the late ‘70s and COBOL, a
complicated business data processing language “spoke” to computers so large
entire frigidly air-conditioned buildings were required for them. Brilliant
and extraordinarily good at his job, when Ken decided to leave the military he
received several offers to work in data processing for large private
companies.<span style="mso-spacerun: yes;"> </span>The starting salaries he was quoted
would compare to six figures today.<span style="mso-spacerun: yes;"> </span>Flattered,
he nonetheless declined all offers.<span style="mso-spacerun: yes;"> </span>He
was resigning from the USMC in order to study theology.<span style="mso-spacerun: yes;"> </span>As it turned out, we both did, helping each
other with coursework, kids, and work.<span style="mso-spacerun: yes;">
</span>That was not an easy time, but we had a goal.</span><span style="font-family: Calibri;"> </span><span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">We were going to minister overseas as
missionaries.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Fast-forward several years.<span style="mso-spacerun: yes;"> </span>We were co-pastoring our second church, but
some time before we had applied to our denominations’ world missions
department.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;">
</span>Things were moving along in the complicated process, albeit slowly.<span style="mso-spacerun: yes;">
</span>We were stunned when we received a letter that turned out to be a polite
but strangely unequivocal “No, thanks.”<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">I remember the two of us sitting on the bed staring at
each other, speechless and teary-eyed. This
sudden death of something we had planned for and worked towards for years was
devastating and confusing.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;"><span style="mso-spacerun: yes;"></span>We were living on a very low salary
and struggling to make ends meet. </span><span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">We thought about those large salary offers from
nationally-known companies, and we cried and we prayed and we struggled to understand.<span style="mso-spacerun: yes;"> </span>We never did, and this was deeply painful for
a long time.<span style="mso-spacerun: yes;"> We tried to find out more, but t</span>here was, we were told, no
negotiating and no further explanation forthcoming.<span style="mso-spacerun: yes;"> </span>While we struggled with the unexpected NO, we struggled even more with the seeming injustice of it. <o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Meanwhile, our small rural church had been growing.<span style="mso-spacerun: yes;"> </span>We were excited about what might lie in
store and we talked about the approaching need to expand our facilities. If we weren't going to fulfill the dream of an overseas missions assignment, we would turn our thoughts and energy to our current place.</span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;"></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Then things began to go bad. Very bad.<span style="mso-spacerun: yes;"> </span>Unknown to us, a monstrous lie had been told,
followed by another and another. No one told us, so we were mystified at
what was happening to our congregation.<span style="mso-spacerun: yes;">
</span>There were other complicated issues involving a beloved former pastor
who remained in the congregation and the deacon board, one of whom was the
son-in-law of that former pastor.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Things got really ugly.<span style="mso-spacerun: yes;">
</span>Small towns are often places where news travels fast and rumors travel too. Unfortunately,
there are plenty of people who love to spread gossip—especially if it is about
clergy.<span style="mso-spacerun: yes;"> </span>One very bad day, our daughter
came home crying because someone on her school bus had repeated one of those monstrous
lies to her, adding that maybe her dad should go to jail. Once a teacher at
the middle school said to her, “I don’t believe what people are saying about
your mom and dad.<span style="mso-spacerun: yes;"> </span>They must be good people
to have a daughter like you.”<span style="mso-spacerun: yes;"> </span>That
teacher’s comment was well meant but not particularly comforting.<span style="mso-spacerun: yes;"> </span></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">I wanted Ken to resign, but he said he could not.<span style="mso-spacerun: yes;"> </span>We still
disagree, all these years later, about what the “right” thing to do would have
been.<span style="mso-spacerun: yes;"> T</span>he stress on us was extraordinary
and unrelenting.<span style="mso-spacerun: yes;"> </span>Eventually we were
asked, at a particularly horrid business<span style="mso-spacerun: yes;"> </span>meeting, to leave.<span style="mso-spacerun: yes;"> </span>Only afterwards did a dear church couple
visit us and tell us about the second and third lies. Too late, of course. We were horrified and our hearts were broken.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">We examined our motives and our actions, reminded
ourselves that we could not afford to get bitter, did our best to forgive.<span style="mso-spacerun: yes;"> </span>Still, we were spent and knew we could not just try to pastor
another church somewhere.<span style="mso-spacerun: yes;"> </span>We needed to
leave “the ministry” for a while, but we had two children as well as ourselves
to think about.<span style="mso-spacerun: yes;"> </span>We had to quickly find
an income, but the computer world had changed in the years since Ken’s
expertise had been prized. <o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">The church building was right across a narrow driveway
from our home, which was a “parsonage” owned by the church.<span style="mso-spacerun: yes;"> </span>We had 30 days to vacate. I closed the
curtains so we did not have to constantly see the church building. <span style="mso-spacerun: yes;"> </span>Looking back, I think both of us were
perilously close to breakdowns.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">All that leads me to the night I had the dream of the
blue counters.<o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">I lay in bed, deeply depressed and trying to pray. Eventually
I slept and dreamed a vivid dream.<span style="mso-spacerun: yes;"> </span>Ken
and I were with our children in a kitchen, the counters of which were a deep royal
blue, my favorite color.<span style="mso-spacerun: yes;"> </span>I still
remember, nearly 30 years later, the expression on our little boy Joshua’s face
as he laughed, jumped and clapped his hands. We were extraordinarily excited. There
was more exuberance than we would likely have displayed in real life. Even in
the dream, I knew we were happy because we had found a new home.<span style="mso-spacerun: yes;"> </span>We were safe.<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Next morning I didn’t say anything, but the details
remained clear in my thoughts--our dreamt-of laughter, our smiles and
joy.<span style="mso-spacerun: yes;"> </span>And most vivid of all were the blue
counters.<span style="mso-spacerun: yes;"> </span>I couldn’t stop thinking about
them, and the details seemed much more like a memory of a real-life event than
a dream.<span style="mso-spacerun: yes;"> </span>Eventually I wondered if the
dream might be important. Somewhat sheepishly, I told Ken about it. <o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Not long afterwards, Ken found a job as a fuel truck
driver. I had already been working part-time for the county Department on Aging. About a week before we had to leave the parsonage, we found an available rental.
The house and yard were a mess, but there were many things to like
about the place and the rent was affordable.<span style="mso-spacerun: yes;">
</span>The landlord was a hate-filled nut, but we didn’t know that yet.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;"></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">The relief at having a source of income and a
place to live was enormous, but I stood in the kitchen and looked at the
counters.<span style="mso-spacerun: yes;"> </span>They were not blue. They were
a particularly ugly brownish yellow. I told Ken, “I guess that dream was
just a regular dream after all.”<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">The spiteful nature of our landlord soon became
apparent. We avoided him as much as possible.<span style="mso-spacerun: yes;">
</span>One day we came home to a hand-written note that informed us we were
being “evicted” and had two weeks to leave.<span style="mso-spacerun: yes;">
</span>He would not be returning our deposit.<span style="mso-spacerun: yes;">
Feeling fed up with injustice, w</span>e went to small-claims court and we listened, incredulous, as the
landlord described how we had <em>ruined</em> his house.<span style="mso-spacerun: yes;">
</span>He had no proof. We had actually cleaned up a great deal of garbage and
improved the place enough that someone wanted to buy it.</span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;"></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">The clearly intoxicated judge said he didn’t
know what to believe and handed down a decision completely contrary to
landlord-tenant law. While we weren’t exactly evicted, the landlord had sold
the house and we had to move.<span style="mso-spacerun: yes;"> </span>It was a
few weeks before Christmas.<o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Someone told us about a house owned by a missionary couple
who were relocating and needed to rent it quickly.<span style="mso-spacerun: yes;"> </span>One cold night, Ken and I, feeling utterly
defeated, went to look at a large house secluded in thick pine woods. There
were no visible neighbors.<span style="mso-spacerun: yes;"> </span>In the back,
a hill sloped down to a small lake. We soon saw that the house was beautiful inside
too.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Ken whispered to me, “Don’t get your hopes up. On my
current paycheck there is no way we will be able to afford what they will want
for rent.”<span style="mso-spacerun: yes;"> </span>I whispered back that it
would be rude not to take the tour.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">We passed through a formal living room to an oak stairway.
On the second floor were three bedrooms. The master bedroom was about the size
of the parsonage living room, with a private bath and large glass doors leading
out to a deck that overlooked the moonlit lake.<span style="mso-spacerun: yes;">
</span>Downstairs we saw a dining room and a large family room with a fireplace.<span style="mso-spacerun: yes;"> </span>Another set of glass doors led to a second
deck.<span style="mso-spacerun: yes;"> </span>Ken looked at me and shook his
head, but talked to the husband of the pair about rent as, c</span><span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">hatting about the loons that lived at the edge of the
lake, the woman led me to the kitchen. I
heard no more of what she said.<span style="mso-spacerun: yes;"> </span>My
mouth, I have no doubt, was open.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: Arial;"></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">The counters in the kitchen were <i style="mso-bidi-font-style: normal;">blue</i>.<span style="mso-spacerun: yes;"> </span>Not just any blue,
they were a lovely, bright royal blue. I had never before, and I have never since, seen royal blue countertops. This was the kitchen of my dream.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">I bit dazed, I followed her back to the family room.<span style="mso-spacerun: yes;"> </span>Ken told me what they wanted for rent, adding
to the man, “I’m not sure we can do that.”<span style="mso-spacerun: yes;">
</span>Some sort of negotiation followed, but all the while I was urging Ken towards
the kitchen door.<span style="mso-spacerun: yes;"> </span>“Honey, you must come see the kitchen.”<o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Ken sighed a bit, and said, “Dorcas, this is a great house,
but we just can’t afford the rent.<span style="mso-spacerun: yes;"> </span>It is
less than I expected, but still too much for us….” He stopped talking and
stared at the blue counters.<span style="mso-spacerun: yes;"> </span></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">We rented the house for a lower figure than first asked
and we lived there nearly three years.<span style="mso-spacerun: yes;"> </span>They
were difficult years but the time was made easier by our secluded house in the woods.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>We didn’t have to see anyone if we didn’t
choose to—and we usually didn’t.<span style="mso-spacerun: yes;"> </span>We
marveled at the deep silence and the beauty of the
snow-covered pines all around us.<span style="mso-spacerun: yes;"> </span>In
spring their scent filled the air.<span style="mso-spacerun: yes;"> </span>We
often sat on the deck to listen to loons calling across the lake, and we watched
a pair of Canadian geese teach their little ones to swim.<span style="mso-spacerun: yes;"> </span>At night, a great horned owl sometimes hooted in
a tall pine just beyond our bedroom deck. <o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">At some point, Ken applied to the Wisconsin Department of
Corrections (the DOC) for a chaplain position.<span style="mso-spacerun: yes;">
</span>He took the test and scored highly. He expected an interview but
we heard nothing and after a time we forgot about it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">Eventually our landlords wanted more rent and we moved
into a tiny house in town.<span style="mso-spacerun: yes;"> </span>As it turned
out, it would have been better if we had just stayed a few more months because
not long afterwards, Ken heard from the DOC and was subsequently hired at
Kettle Moraine Correctional Institution near Plymouth, WI. There had been a "hiring freeze" for all state positions, and his test results had remained in a file for over a year. <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;"><span style="mso-spacerun: yes;"></span>He applied for and received official
endorsement from our denomination as a “nationally-appointed home missionary.” <o:p></o:p></span></div>
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">We sometimes missed our beautiful, secluded home in the
woods.<span style="mso-spacerun: yes;"> </span>But the healing of our hearts had
begun there, and life went on.<span style="mso-spacerun: yes;"> </span>Ken spent
over twenty years at KMCI, only leaving when his illness made it
unavoidable.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; line-height: 115%;">It seems to me that God is silent and distant.<span style="mso-spacerun: yes;"> </span>I can’t pray. I struggle with tears and anger
every time I attend church. But lately I have been thinking of that other time
of sorrow and confusion.<span style="mso-spacerun: yes;"> </span>I am, for the
first time in a long time, thinking about that vivid dream and those beautiful
blue counters.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com6tag:blogger.com,1999:blog-13173725.post-1674558766430040802014-07-07T12:10:00.001-05:002014-08-31T16:18:00.669-05:00Ken's Ordeal Part 16: Neurological TestsIt has been three months since a post about Ken, but here is number sixteen. That in itself is a bit horrifying. I think I have avoided posting because things seem pretty grim. It is difficult to be optimistic when writing post number sixteen.<br />
<br />
For the good news, Ken's knee healed fine with no infection. It is a bit swollen, which will be the case for about a year. He limps slightly when walking, but this is a great improvement over his really frighting, lurching, bow-legged gait before the surgery to "revise" the previous knee prosthetic. He has very little knee pain. The VA rheumatologists have prescribed an antibiotic that has a side effect of lessening joint pain, and it is helping somewhat with Ken's overall pain, though not enough to discontinue the high levels of pain meds.<br />
<br />
Last post, I mentioned tests in the VA neurology department. Ken had a nerve test to once again try to discover if his pain is due to nerve damage or some undiagnosed nerve disease. It is a painful test that always brings Ken to tears and has now been done three times, once in Sheboygan, once at Mayo and now at the VA. The results, once again, showed the kind of neuropathy that would be expected in a long-time diabetic but nothing of note.<br />
<br />
Then we went back for an actual neurology consult. (I had insisted on one and the rheumatologist had agreed.) I wheeled Ken into the little room in a wheelchair. In the room were a white-haired doctor about our age who had been present during the previous nerve testing, and a young, soft-voiced middle-eastern woman who appeared to be a student. The older doc was grumbling quietly to her. ".....and what are those guys in rheumatology doing? What do they want? We already did the test..." <br />
<br />
The woman began to ask Ken about his knee, apparently thinking he was in a wheelchair because of that. (There is a bad-looking scar.) Then she asked other very general questions about pain. Ken was not having a good day, and he struggled to answer. His voice was weak, and he kept his head down. Meanwhile, the older doctor had his back to us as he typed on a computer keyboard.<br />
<br />
I got angry. I said, "STOP! Please stop asking questions and just listen to me, and I'll save us some time." <br />
<br />
The young woman stopped, looking surprised, and the typing at the keyboard stopped too. I apologized for being rude, telling her I wasn't angry at her, but I was frustrated. (Serious understatement.)<br />
<br />
I went on, speaking quickly, "Ken is not in a wheelchair because of his knee. He does not have enough energy to walk around this medical center. He is in severe pain, as you know. He has also lost about 130 lbs. with no dieting. His testosterone level remains quite low in spite of monthly injections. He sleeps a great deal of the time. He has trouble with memory, and this is getting worse. He has been to Mayo six times and between Mayo and here has been tested for all kinds of things. We still have NO DIAGNOSIS after over a year and a half! He had a pheochromocytoma. [If you are one who has read these posts from the first one, you will likely remember that is what started this series--the one-in-a-million tumor that is often diagnosed post mortem because it is so rare.] The tumor was removed in February of last year and he was expected to <em>get well</em>. His blood pressure is no longer high. His blood sugars have stabilized and he no longer has to deal with hormonal 'storms' that caused all kinds of weird symptoms for years on end--but as you can see, he is NOT WELL!"<br />
<br />
At this point the older doctor turned and said, "Well, your husband has been a diabetic for a long time, I see." He started explaining to me as if I did not know what diabetes can do to a person. I put my hand up. "Please stop. We know this."<br />
<br />
He looked irritated, started to say something, stopped, and then looked closely at Ken who was still sitting with his head down. After a long moment, the doctor asked quietly, "Mr. George, how old are you?"<br />
<br />
"Sixty-two. I'll be 63 in July."<br />
<br />
"Hmmm...sixty-two...." he paused, and I said, feeling testy, "Yes, he is only 62. He is 62 going on 82." Tears came to my eyes, and the doctor looked at me kindly. I have since wondered if <em>he</em> is 62.<br />
<br />
"I see," he said.<br />
<br />
And it seems he did. The atmosphere in the room changed. He asked Ken some simple questions, examined his hands, had him raise his arms and do some other range-of-motion movements. Ken mostly kept his eyes closed. I'm not sure why. I expect just from exhaustion and maybe frustration. <br />
<br />
"Mr. George, you can open your eyes," the doctor said gently. <br />
<br />
Looking at me, the doctor reviewed the symptoms I had just recited. Then he turned to Ken.<br />
<br />
"Mr. George, did you have any episodes of hypoglycemia?" (That's low blood sugar.)<br />
<br />
Ken said, "Yeah. A few." He shrugged.<br />
<br />
I said, "Not a few. <em>Many.</em> And some were severe enough that he passed out. His blood sugar swings were crazy. He could go from a blood sugar level of over 300 to one below 50 in half an hour. Of course, we now understand why nothing Ken did made any difference. It was the tumor."<br />
<br />
"Aha. Yes." <br />
<br />
He paused a long time, continuing to look at Ken, before saying, "High blood sugar is a bad thing, of course. But low blood sugar can be even worse. We may be dealing with brain damage." <br />
<br />
Ken had a stroke many years ago. He recovered well, and he never even missed work, though he should have. There were some lasting effects, but they were mild and went mostly unnoticed by people who did not know him beforehand. The doctor told us that sometimes low blood sugar could increase the damage already caused by the stroke. Of course, other areas could be damaged too.<br />
<br />
He said to me, "You were right that I did not understand, but now I do. This is really complicated, so thank you for helping me put it together. There must be some sort of central event, some single cause for why Mr. George has changed dramatically in a relatively short time. There has to be. This can't be all unrelated." He began to explain, but I nodded and said, "There is no need to explain. Ken and I understand this. We have been <em>saying</em> that to every doctor we have seen. So many I don't remember them all."<br />
<br />
He scheduled two things. First, Ken would have several hours of neuropsych tests. Second, he would have a brain MRI. He seemed astonished that Ken's Aurora Clinic doctor had never ordered a MRI. He said, "I would have ordered one be done yearly, since you did have a stroke." He was surprised that none was done at Mayo either. Perhaps it eventually would have been, except that the VA stopped payments to outside providers and required Ken to receive all care at the VA. <br />
(And I am broken hearted by the news on TV about the VA and deeply glad we do not live in Phoenix, AZ.) <br />
<br />
Anyway, a few weeks later, Ken spent an hour talking to a nice woman who is a nueropsychiatrist. When Ken left the room, our daughter, Kris, who was the one with Ken that day, said "My dad used to be a genius." Kris told me that the doctor replied, "Oh, I can tell." She even told the technician who would administer the testing, "This will require some additional tests. This is a very intelligent man."<br />
<br />
When Ken was in the US Marine Corps, his IQ test had a result of 170. Yep. A very intelligent man. In the USMC he was a computer programmer/systems analyst and was the lead programmer who wrote the fiscal system for the Marine Corps (winning the prestigious Navy Acheivement Medal for his work). He graduated from college Magna cum Laude with five minors (missing "Summa" by one tenth of a point) in spite of having a family, working several hours a week, and playing basketball on the Trinity team. On the morning he went for the neuropsych tests, he said, "If I am The Scarecrow will you still love me." I can't type that without crying. The Scarecrow, of course, is the Wizard of Oz character who had no brain.<br />
<br />
The tests were all about mental functioning and took nearly four hours. Tomorrow I will take Ken to the VA Medical Center for the brain scan. Then we will make an appointment to meet with the original white-haired neurologist to discuss the results of these tests. <br />
<br />
So at Post Number Sixteen, we are back to looking at the results of the pheochromocytoma, the "little ball of hate" as the urologist who did the surgery to remove it over a year ago, said to us.<br />
<br />Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com5tag:blogger.com,1999:blog-13173725.post-68352988539163021392014-04-17T09:57:00.000-05:002014-04-17T09:57:19.448-05:00Ken's Ordeal Part 15: Knee SurgeryOn April 4th the long-awaited replacement of Ken's failed knee prosthetic took place at Milwaukee's VA Medical Center. His pain had steadily increased in the two weeks or so leading up to surgery, perhaps because he had reduced his level of pain meds or perhaps because the damage in his leg was worse, or both. At any rate, walking was difficult and his knee looked like a large cantaloupe. Reducing the level of narcotics meant that post surgery pain could be better controlled, but there had been weeks of increased misery. <br />
<br />
So even though we were aware it might be a challenge, Ken mostly seemed relieved that the time for this surgery had finally come. It was <em>last summer</em> when an orthopedic doctor at Mayo had said, "This replaced knee MUST come out, and soon." No one knew if they would be able to put in a new knee or if they would discover previously hidden infection, necessitating months of immobility and a delay of replacing the prosthetic.<br />
<br />
The VA staff was friendly and efficient. I was a little sad when a tall, smiling black woman came in and introduced herself as the anesthesiologist who would be taking care of Ken during the operation. I had been looking forward to seeing the doctor I wrote about in my last post--an anesthesiologist who seemed to "get it" more than most had. As Ken was wheeled away, she gave me a little pat and a large smile, assuring me, "We'll take good care of him." I nodded, trying to smile and failing.<br />
<br />
I waited in a rather unpleasant family waiting room. It was crowded, noisy, and the opposite of private. There were rows of uncomfortable chairs. No coffee, no snacks or fruit, none of the trappings one might see elsewhere. I had been told that the resection of the failed knee prosthetic would likely take longer than a typical first-time knee replacement and to expect a wait of three to four hours. <br />
<br />
Pastor Sharon came and sat with me in the cafeteria and we talked as we munched on lukewarm biscuits and gravy and drank bad coffee. A bit later, Rev Gal (and a longtime cyber friend) Julie came and we talked about church and life and how things have changed for us both. She gave me a hug that was from all my dear Rev Gal Blog Pal cyber friends. <br />
<br />
About three hours after Ken went to the operating room, I received a call from one of the nurses. "We are still working on getting the old knee replacement out. He is stable though, and vital signs are good. It will be a while." <br />
<br />
Our daughter, Kris, arrived and we sat in the waiting room trying to ignore the loud cell phone conversation about someone's bladder infection, the complaints about Obamacare and politics in general, the anxious people. We talked a little, read, took short walks. And we waited and waited and waited. It was three more hours before we were informed that the surgery was finally finished and Ken was in the recovery area. Ken later told us, "It was really crowded back there."<br />
<br />
A surgery resident told us that it had been quite difficult to remove the old prosthetic. They needed to remove large amounts of inflamed tissue in order to get to it, resulting in quite a bit of blood loss. The thigh bone had been badly damaged by the "rattling around" of the loose knee replacement, so they had to repair it with cement before they could put in the new prosthetic. He commented, "That was on the difficult end of the scale of surgery... but it looks good now." There was no sign of infection in the knee. This was both good and bad news. Good news because instead of months of recuperation followed by another surgery, they were able to put in the new knee now. It was bad news because an infection might have explained Ken's months of illness.<br />
<br />
The subsequent hospital stay was a mix of good things and bad. There were competent and caring nurses, a great physical therapist and occupational therapist, and a pleasant room (unlike some others at the VA). There were also inexcusable incidents of missed medications and a very evident lack of communication between members of the health care "team." Ken seemed exhausted, was in great pain and quite depressed, and no one seemed to have been told that the knee pain was not the only issue. He was told more than once to , "Just grab the trapeze and pull yourself up; after all you have upper body strength" and similar remarks. <br />
<br />
Kris posted a large sign that read something like:<br />
<em>Ken George is ill. He has lost 130 lbs. with no dieting. He experiences severe all-over joint pain similar to RA. He has limited hand and upper body strength.</em> <br />
<br />
After he received two units of blood, Ken felt better. He was discharged after six days in the hospital. He is still waiting for the authorization to receive physical therapy locally. He is very tired, but he is walking reasonably well and doing leg lifts as much as he can.<br />
<br />
Two days ago we drove to Milwaukee to see the doctors in the rheumatology clinic. The ride to Milwaukee and back was painful for Ken because he can't straighten his knee. He looked grey and had a hard time talking by the time we arrived. It was a depressing and mostly pointless visit. They clearly have no ideas, but they did say they are referring Ken to a VA neurologist. They also said his blood count was quite low, about the same as when he had received the transfusion after surgery. They sent him to the lab for some further blood work. <br />
<br />
We have heard nothing about the lab results, but we are going back to Milwaukee today for the follow-up visit at the orthopedic department so we will check to see what they plan to do. As for the knee, hopefully the staples can come out today, and hopefully Ken will be able to get going on physical therapy. <br />
<br />
And we will wait for the tests that are scheduled in the neurology department. Some of these tests were undoubtedly done at Mayo--but we shall see.<br />
Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com5tag:blogger.com,1999:blog-13173725.post-20282087971661453152014-03-14T15:27:00.001-05:002014-03-14T15:27:21.555-05:00Ken's Ordeal Part 14 No Cancer, But is this Good News?It has been two months since I posted. Where to start?<br />
<br />
Ken had a PET scan.The rheumatologist says that the illness Ken has, whatever it is, cannot be RS3PE, much as the symptoms fit, because certain things should show up on the PET scan and did not. Ditto for rheumatoid arthritis. <br />
<br />
As I mentioned in #13, they were looking for cancer (because if Ken had a new tumor, RS3PE would almost certainly be the diagnosis). The VA Rheumatologist (the Fellow I mentioned before) said, "It is good news, Mr. George. You do not have cancer." Of course, that is good news. But in a strange and sickening way, it would have been a sort of relief to have a tumor show up on the PET scan. Why? Because then we would have had a plan of action, a known enemy--even if a bad one--to fight. As it was, it doesn't mean Ken is better. He is continuing to get worse. It just means we still have no diagnosis. <br />
<br />
They decided to try Ken out on an Rx that might reduce inflammation and pain. It has been two months, and there is no improvement.<br />
<br />
Meanwhile, he has a horrible open wound on one of his toes. He has been going to Milwaukee to the VA wound clinic for weeks now. It is finally starting to show a little progress in healing.<br />
<br />
As for the request for a new primary care doctor, Ken's request was denied. He was informed that his PCP was doing "all he needed to do." Interesting, since he has never seen Ken again after the introductory visit. He was told, "If you do not like our decision, write to your congressman."<br />
<br />
So we have been waiting for the time to pass for the replacement of the failed knee prosthetic to finally take place in early April. Ken can hardly walk, especially when first rising from a sitting position. His leg is bowing outward. It is severely painful, in spite of the narcotics he is taking. Yesterday we went to the VA for the usual preoperative lab work and visit with the anesthesiologist. The anesthesiologist was concerned about the wound on Ken's toe. He delayed his appointment with Ken and instead sent us to orthopedics. They inspected the wound, ordered additional labs and withdrew four large syringes of bloody fluid from Ken's nearly-basketball-sized knee.<br />
<br />
I asked about the possibility that the inflamed knee could be causing Ken's other illness symptoms and was told it was "highly unlikely." The very young ortho doc, who Ken had not seen before, said the wound looked "clean" and cleared him for surgery. Relieved, we headed back to the anesthesiologist. <br />
<br />
He was great. I only wish Ken's primary care doctor had shown such careful concern. He asked many questions, looked up records from other places, and said, several times, "But what is wrong? Clearly something is wrong beyond a failed knee replacement. What tests have been done?"<br />
<br />
At this point, I think every possible diagnostic test may have been done, either at St. Luke's (at the time the pheochromocytoma was removed) or at Mayo (remember, Ken was there six times) or at the VA. The PET scan was the last. <br />
<br />
The anesthesiologist kept shaking his head, looking perplexed. He looked very serious. He told Ken all the risks, of course, which are horrific. And then he added, looking directly at me, "If it were me, I would not get this done until your toe wound is healed. Dr. C. (the surgeon who comes to the VA once a month just to do failed knee replacement surgery) does not know your whole history. He does not know how bad your leg circulation is, nor about your several severe bouts of cellulitis (leg infections). Nor about your current general state of illness. The risk of infection is great and having a wound makes it greater." <br />
<br />
Then he said, "If you have an infection, in spite of all the lab work and scans saying you don't, it would explain why you are so ill. You do have to do this knee surgery, because the knee may be making you sick."He went on, "I understand that you do not want to delay. It has been too long already. I am just the anesthesiologist, but I am very concerned. On surgery day, if you don't delay it, insist that Dr. C. actually looks at your toe and talks to you before he does ANYTHING. Insist." He repeated this at least three times before we left. <br />
<br />
He told us he was very concerned about pain management post surgery, since Ken is already in severe pain in spite of taking both methadone and Oxycontin. He urged Ken to cut back, saying, "Of course, you are dependent by this time." Of course. "Don't suffer unduly, and if you have to keep up the current dose, do so.....but....really try to lessen it. If you can't you will pay for it later when the knee is worked on." <br />
<br />
We decided not to cancel the surgery, for now. If the toe wound is still open at the next visit to the wound clinic, we will consider cancelling.<br />
<br />
Which is worse? The possibility of severe infection? Loss of a leg, or worse? Or continued decline because all this illness is due to hidden infection or prolonged inflammation?<br />
<br />
We were silent on the two-hour trip home. <br />
<br />
There was a letter from Aetna in the mailbox. It informed Ken that his long-term disability with the state is denied. They never received any form from the rheumatologist, in spite of us sending it twice and calling them twice as well. (Remember, the primary care doctor refused to fill it out but the rheumatologist said he would.) We have appeal rights. <br />
<br />
I went to bed, put the pillow over my head and cried for a long time. Ken told me this AM that he didn't get much sleep, since he cut his pain med in half before taking a bedtime dose. He looks miserable. <br />
<br />
I am going to see my sister in South Carolina next week. She had a near-fatal medical situation earlier this year. I feel guilty saying it, but I am glad I will have a week away while Ken attempts to lower his pain meds. I will file an appeal about the denied disability claim, and I will call the VA patient advocate and pitch a fit when I get back home.<br />
<br />
And we will keep close watch on Ken's toe, and try to decide which course of action is the wise one. I hope this makes sense and isn't full of typos. Written on the fly. <br />
<br />
Thanks to those who are still reading. I love you.<br />
<br />
Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com14tag:blogger.com,1999:blog-13173725.post-51493400412535739312014-02-08T18:31:00.000-06:002014-02-16T18:21:50.688-06:00Remembering KevinLast Sunday, January 2nd, Ken's brother, Kevin passed away. He was 54.<br />
<br />
Kevin lived with us for almost five years. The last few months, mainly because Ken has been so ill, Kevin has lived in a group home. We all knew that it was not likely he would live a long life, but the end came shockingly quick. <br />
<br />
When I think of my brother-in-law, Kevin, it is as one of three quite destinct persons. The first is the child. My earliest clear memory of him was after going to 4th of July fireworks with Ken, his mother, and his two little brothers, Kevin and Keith. Ken and I were just teenagers. We were all eating ice cream at the counter of a Howard Johnson's restaurant somewhere in California's San Fernando Valley. Kevin (about five years old) said, "Mom, is Ken going to marry Dorcas?" I can still see him--dark brown eyes full of childlike innocence, and that mop of thick wiry hair. Ken and I laughed self-consciously. <br />
<br />
I soon learned that the George household was not a happy one. I saw and heard things that shocked me. I was young and I was horrified, and I did not know what to do about what I observed.<br />
<br />
Both my mother and father in law have died. I loved them, and I miss them. They each had some wonderful qualities. Mom and Dad were not bad people, but they were very bad parents. They had no idea how to raise children. I think they loved their kids but were afraid that to show tenderness or affection would make their children weak. It was impossible to know what would set one, or both, of them into a rage. A Mormon family, the nice façade was on when needed, but it was quickly discarded at home.<br />
<br />
Kevin was an average child with three very intelligent siblings. The eldest, Karal, was the only girl and had left home by the time I met Ken. All of them endured physical and verbal abuse. They were demeaned constantly. They were hit, sworn at and repeatedly told that they were stupid, dumb, or worthless Kevin took it to heart the most perhaps. I sometimes wondered, "If the Georges act like that with me around, what must they do when they don't have company?"<br />
<br />
Kevin was a good-looking little boy, a tall, gangly, rather hapless kid. I can see his face when Ken graduated from Marine Corps boot camp. He smiled and smiled--so proud of his big brother. It was a rare good day with the family. The child Kevin had a sweet smile and an innocent and kind heart. He made me sad. I knew he was a child who needed affirmation and encouragement but rarely got it. <br />
<br />
Kevin tried to kill himself at age twelve. He was in a coma for a few days, and he was never quite the same afterwards. A few years ago he told me that he started using drugs at 14. "The stoners," he said, "accepted me."<br />
<br />
The second Kevin became an angry, selfish, rebellious teenager who landed in juvenile hall more than once. Mom and dad couldn't handle him, so he was sent to live with big sister, Karal--a disaster that lasted only a few months and ended very badly. Next stop to land was with us. While longer than the stint with Karal (about a year and a half), it did not go well. We tried, but we were young and Kevin was broken. There were sometimes glimpses of the person he should have been, but they were rare. He was too angry, too sullen, too bitter and hate-filled for anyone to deal with. When I picture him during that time, his face is dark--and not just from his olive skin. He was quite handsome, but he was always scowling. He was a thief and an almost pathological liar. <br />
<br />
He did go to church with us, and there was a time when we saw a change which lasted a couple of months. Then he was worse than ever. He ran away, missing finishing high school by a mere three credits. After a few encounters here and there, one for his father's funeral and one for his sister's funeral, we did not see him again. Years passed. Rarely, we heard a little about him. He was a carnival worker down south somewhere. He was in the Army. He was tossed out of the Army. He was married and back in California. He was divorced. He was homeless. He was living with a cousin. <br />
<br />
All attempts to talk to him, including a phone call when his mother died, were refused. We prayed for him, off and on, and we thought about him sometimes--less as two decades went by. Sometimes we wondered if he was still alive.<br />
<br />
And then one day the phone rang. It was Kevin. He was clearly strung out. He couldn't stop talking. The voice was unrecognizable. But it was Kevin. So I talked, or rather listened, for a while, tears running down my face and then passed the phone to Ken. Afterwards, we hugged each other and cried. There were no words to say.<br />
<br />
I don't want to write much of what we learned about Kevin. The details of his life are gruesome and sordid. He had endured eight amputations. A diabetic who never took care of himself, he developed gangrene in his foot. His foot was amputated, and then, as the infection advanced, more of his leg. But he said to Ken, "They told me they couldn't take off any more and if it didn't work this time I would die. I left my anger on the operating room floor with my leg. I love you and Dorcas. I don't remember why I hated you so much. I asked God to forgive me." He sent us a picture--a scrawny shadow of his former self, with no teeth. I threw it away. <br />
<br />
A few years passed with occasional phone calls, and two brief visits. I wrote about one <a href="http://here./">HERE.</a> He wanted to move here, I think because he thought living with us would help him stop the drugs. We had no room for him, because my elderly mother lived with us.<br />
<br />
Once he called after an extended hospital stay. He had suffered a third heart attack and he realized that meth, which he had been shooting up for years, was going to kill him at last. He told us, "I had been trying to talk to God ever since I forgave you when the last of my leg came off. I just couldn't stop the drugs, and I knew I was going to die. I never forgot what I heard when I lived with you guys. I was desperate and I cried out to God to deliver me. And God did! I mean, I haven't used meth since. It has been a month. I haven't even <em>wanted</em> any. It has to be the Lord."<br />
<br />
Eventually, after my mother died, Kevin moved here with his dogs, Soo Lin the pug and Juanita the Chihuahua--the Most Annoying Dogs Ever--but enough about them. That brings me to the third Kevin I think of. <br />
<br />
Having Kevin at our house was not easy. He had clearly done a lot of damage to his body and mind. He had some annoying quirks, like talking loudly to the television. His hygiene was sporadic. He was often ill. He had lived on little besides Ramen noodles for a long time. Better nutrition and regular doctor visits helped. There was no more smoking pot, and with the help of Chantrix he even quit smoking cigarettes.<br />
<br />
Kevin was almost painfully polite and rather articulate. Many people did not realize that this middle-aged man was vulnerable and childlike in numerious ways. He continued to make foolish decisions, such as refusing to drink water or really anything but highly creamed and sweetened coffee or diet soda. It took more than one visit to the Emergency Room with dehydration to eventually convince him that he had to drink water.<br />
<br />
He thanked us many times for bringing him to Wisconsin, saying he loved it here. It was so clean...so green...so friendly...so safe. The first fall, with our beautiful trees, amazed Kevin, as did the first major snowfall. He took pleasure in simple things.<br />
<br />
He attended church at Jubilee AG for a while, even though I was no longer the pastor. In warm weather he could motor there in his electric wheelchair. He became a greeter--a very good one I am told. Eventually he started coming to church with us, and he loved to sing. He was baptized and became a church member, something of which he was very proud. He loved it when Kris, our daughter, and her family moved not far away. Trinity, his grandniece, often spent Friday night at our house, and many Saturday mornings found the two of them propped up on his bed, laughing together at cartoons. When Noah, our son Josh's little boy, was born two years ago, Kevin rejoiced at another child in the family. He often forgot Noah's name, so he usually called both Noah and Trinity, "Baby." Having children around caused him to think of his long-ago family. He expressed much sadness and regret about his failed marriage, telling me not long ago, "I will always love Michelle. And I will always love Kenny and Kelly, my step kids. I did a lot of bad things. I was not a good dad. I hope they forgive me." <br />
<br />
He talked to anyone who would listen--the mail carriers, the garbage men, the neighbors, the grocery clerks. He wasn't shy about sharing his past and telling people that God was the reason he was still alive. Once he was invited to speak to a local youth group. With help, he shared his story, telling the kids, "I am a wreck because of bad choices. I did this to myself, and I am an example of what not to do." I was later told, "It was probably the best meeting we ever had. The kids hung on every word, and asked lots of questions. Even the 'difficult' kids who sit in back were quiet and listened intently."<br />
<br />
In the end, the Kevin I will choose to remember is the third one. He was the affectionate child Kevin returned in a broken adult body. Emotionally he seemed about 14. But he was drug and alcohol free for five years, and he gradually laid down most of his bitterness and anger. He once again became the sweet person he always was underneath. He loved to hug us and was always glad to see any family or friends who visited. We had a wonderful time Thanksgiving of 2012, meeting up with youngest brother, Keith, and other family, our first time together in many years. <br />
<br />
Keith came to our house at Christmas along with Josh, Stephanie and Noah. Our house is small. Ken, me, Kris, Daryl, Trinity, Josh, Stephanie, Noah, Kevin and Keith in our living room is about six people too many for comfort, but we had a good time. Yes, Ken remains very sick. Still, we laughed and smiled and opened presents, and ate too much and watched the two cousins play. There were jokes and hugs and remembering. There was joy. Kevin was loved. All of us were.<br />
<br />
Last week he got pneumonia and his kidneys failed and his heart soon gave out. As the ICU doctor said, "The damage to his body has been great. It is just too much to undo."<br />
<br />
Kevin failed at many things. In the end, he succeeded at the most important things of all. He gave his live to the keeping of God, he forgave, he loved, he accepted responsibility for his wrongs, he spent several years clean and sober. He touched many people with his smile, his conversation, his honesty. <br />
<br />
As we talked to him in the ICU, the only part of his body that could move was his foot. He moved his foot at specific times. We held his hand and told him we love him. We shared a few stories. Trinity was a little scared, but at the end she went back to say, "Good bye, Uncle Kevin. I love you." <br />
<br />
We said good bye for others who couldn't be there. We told him that Juanita would be cared for (not by us!) and we told him how glad we were that we reconnected and that he came to Wisconsin. We told him we were proud of him. We told him we will see him again. We remember Kevin.<br />
<br />
Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com9tag:blogger.com,1999:blog-13173725.post-44559138504924007482014-01-14T03:55:00.002-06:002014-01-14T04:21:36.804-06:00Ken's Ordeal Part 13: Scans and more ScansKen has returned to the Milwaukee Veteran's Medical Center a couple of times for scans that are designed to reveal infection in the bones. The good news is that the scans reveal no infection. Why the knee replacement failed (it's been getting worse for over 10 years) remains unknown. The chance of post operative infection is still a great concern. There is some confusion as to whether Ken can go out of the VA system (due to backlog of surgery scheduling) or not. The "patient advocate" is trying to get that clarified for us and if Ken has to stay at the VA he is trying to get the surgery expedited. Meanwhile, Ken can barely walk. He uses a wheelchair when he has to go to the clinic. <br />
<br />
As for the rheumatology issues, prednisone is the treatment of choice for RS3PE, the disease Ken apparently has. He had prednisone many months ago with no change. As I mentioned last post, RS3PE is sometimes connected with tumors.<br />
<br />
This series of posts started with a diagnosis of an adrenal tumor, a pheochromocytoma, which was removed last February.<br />
<br />
When prednisone doesn't wok, a tumor is suspected. The VA rheumatologist is scheduling a positron emission tomography (PET) scan, an imaging test that uses a radioactive substance called a tracer to look for disease in the body. We assume the PET scan is checking for cancer, though no one has said this. That is the primary reason for PET scans.<br />
<br />
The scan is projected to last two hours and, like an MRI, is done in a large "tube." Because of excruciating pain, Ken was unable to lie still for MRIs at Mayo that lasted for a much shorter time. We informed the rheumatologist of this, and we are waiting to see what they suggest.<br />
<br />
He also has an open wound on his big toe that has been there for a while. He has been to the VA podiatrist twice, and yesterday finally saw an RN in the wound clinic. I hadn't seen the wound for a few days, and I was shocked at what I saw when the dressing came off. His toe looks horrible. The RN says it is not infected, just not healing and she is trying out some high-powered cream He goes back in two weeks.<br />
<br />
Ken is deteriorating. He is weaker, the weight loss continues, along with the severe pain, and he can hardly get out of his recliner. He can only walk very short distances. Yesterday, I am chagrined to say, as I tried to help share the urgency of the situation with the nice man who is the VA Patient Advocate, I started crying. I don't cry in these kind of situations. Not usually. It isn't that I think crying is bad, especially given the nature of this whole process, it is that I am afraid that if the dam breaks, as it did yesterday, I won't stop. <br />
<br />
Ken has been on short-term disability which now should be switched to long-term disability retirement. He received a simple form from the insurance company back in mid December (about the 5th or 6th one that has had to be filled out over the last year). He sent the form to his primary care physician--the new one at the VA. A few days ago he got a call from the insurance company asking about the whereabouts of the form. Two calls to the doctor led to him saying that he did not know Ken well enough to fill out the form and that he should go back to his doctor at Aurora to get it filled out. This from a physician who was quite frank about having not looked at any of the numerous records that Mayo had sent to him.<br />
<br />
Ken relayed this to the insurance company. They said the form had to be from his current doctor, not from one who has not seen him in months. Of course. <br />
<br />
Ken called and asked for an appointment with his VA doc. This was refused.<br />
<br />
So yesterday we spoke to the patient advocate about this, as well as other issues. He contacted the primary care doctor and later relayed the following to Ken. Dr. __________ says, "I can fill out the form for Mr. George if he insists. He won't like it, because he may lose benefits. I do not think he is disabled."<br />
<br />
We have asked for a different primary care physician, but do not know what will happen.<br />
<br />Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com10tag:blogger.com,1999:blog-13173725.post-78363817427735866222013-12-19T07:35:00.002-06:002013-12-21T13:13:38.341-06:00Ken's Ordeal Part 12 in Which We Learn of a New Disease, RS3PEKen's appointment in Rheumatology was at 2. At about 3:30 we finally met the rheumatologist, Dr. Z., a "fellow" as it turned out. He looked very young and he was extremely serious. English was clearly his second language. I was not impressed. <br />
<br />
He hurt Ken badly, bringing him to tears during the exam. He did apologize profusely about five times. He asked all the usual questions, and he told us that he had actually spent several hours reviewing Mayo notes and conferring with Dr. N. the staff rheumatologist, who was, he assured us, "very good doctor and very experienced." I thanked him for taking the time to read the notes. He nodded seriously. After about 15 minutes he said, "I have ideas. But I am calling Dr. N."<br />
<br />
More than a half hour later, Dr. N. entered the room. Ken, meanwhile, had left. He was too agitated and too uncomfortable on the tiny exam table, and I hadn't been able to convince him to stay put. I called his cell phone. Dr. N. was not amused. A small dapper man in his 50s, he asked me questions and tapped his foot. I wasn't too impressed with Dr. N. either.<br />
<br />
Ken arrived.<br />
<br />
After more questions, he said, "Dr. Z. and I independently reviewed the records sent from Mayo. We each came to the same conclusion. Not everything fits, but many things do. We think you may have <br />
a very rare disease, Remitting Seronegative Symmetrical Synovitis with Pitting Edema, or RS3PE for short."<br />
<br />
Ken and I just stared. What? He went on, "Rheumatoid Arthritis, or some other rheumatic disease is really not the disease. It is a symptom. What really sent us in the direction of thinking you have RS3PE is the comment someone put in the Mayo notes, that your hands looked like baseball mitts when you came out of the surgery to remove the pheochromocytoma."<br />
<br />
I nodded, saying, "Yes. I said that to the doctor at Mayo. Ken's hands had been badly painful and quite swollen for weeks. But in the recovery room, well, it was shocking."<br />
<br />
"Yes," said Dr. N. "Very descriptive of you. So let me tell you the symptoms of RS3PE." And he listed them. <br />
<ul>
<li>Symptoms that appear to be seronegative rheumatoid arthritis (RA). ("Seronegative" means that the symptoms are of RA, but the lab work does not indicate RA. The Mayo rheumatologist said they suspected seronegative RA.)</li>
<li>Extreme pain in shoulders and hands and often other joints.</li>
<li>Pitting edema (swelling) particularly in hands or feet.</li>
<li>Fatigue and general illness.</li>
<li>Severe weight loss.</li>
</ul>
The doctor went on to tell us that this disease was "discovered" in Milwaukee, Wisconsin. And then he said, "It just seemed too coincidental that your tumor symptoms became extreme at the exact same time as your hand swelling and the severe, all-over pain began." <br />
<br />
We nodded. I asked, "What do you mean, 'coincentidental? How are the pheochromocytoma and the hand swelling connected? I have lost track of how many times one of us had said to some medical doctor, 'These two things just have to be connected, somehow.' After a while we stopped saying it because our comment never led anywhere."<br />
<br />
The two doctors glanced at each other, and then Dr. N. added the sentence that made my mouth drop open. "RS3PE is associated with <em><strong>tumors</strong></em>. Nobody knows why." <br />
<br />
And I exclaimed, "Get out!" (I think Dr. Z. thought I literally was telling Dr. N. to get out of the room, because he looked at me in surprise.) <br />
<br />
And the St. Luke's rheumatologist, the doctor who saw Ken's hand and their swollen condition about a day after the tumor came out, and the Menominee Falls rheumatologist, and the Marshfield rheumatologist and the Mayo rheumatologist did not make the connection? But two doctors at the Veteran's Administration did? Dr. N. turned us back over to Dr. Z and left. I wanted to hug the serious young Dr. Z, but I was trying not to cry. <br />
<br />
The bad part of this is that it is so rare that he admitted he really did not know what to do next. "Usually," he said, "prednisone is the treatment that works well. We have already been researching when we read the Mayo notes. But you have had prednisone with no effect." <br />
<br />
They are going to do further research and talk to Ken in a month or so if not before.<br />
<br />
I later did some research on the Internet. RS3PE occurs most often among white males over the age of 60, particularly those who live in rural areas. <br />
<br />
Usually when prednisone does not work, a cancerous tumor is found upon further investigation. <br />
<br />
I do not know what to think.Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com12tag:blogger.com,1999:blog-13173725.post-79596025096679081132013-12-18T20:45:00.001-06:002013-12-18T20:45:38.649-06:00Ken's Ordeal Part 11--From the Mayo Clinic to the Veterans' Administration at Milwaukee As I typed the title, and "Part 11," I stopped and walked away from the computer for a few minutes. I am astonished, and not in any sort of positive way. <br />
<br />
When I began these posts with the label "Ken's Ordeal" I had no idea that there would be so many installments. And here I am, one year later, and I look outside, and once again the ground is snow-covered. Spring and summer came and went with no real answers and no celebrating of restored health.<br />
<br />
As I wrote in Part 1, Ken has been increasingly ill for some time. No one paid much attention. <br />
<br />
Anyway, the tumor was discovered in December of 2012, as the urgent care doc looked for possible kidney stones. It was, he said, "Pretty common, likely benign, and usually nothing to worry about." He told Ken to make an appointment with his primary care doctor after the holidays.<br />
<br />
And then Ken's rapidly deteriorating condition grew alarming, and I took him to the Emergency Room in a snowstorm, praying all the way that he would make it. As the days in the hospital passed and tests confirmed that the nothing-to-worry-about tumor was very dangerous indeed, no one seemed too alarmed about the hand swelling he was developing nor the horrible pain in his back, shoulders, hands and neck. It was all likely part of the strange array of symptoms caused by the tumor. After all, they were so rare no one really knew quite what to expect from a patient who had one. <br />
<br />
Weeks went by as Ken took meds to prepare him for the risky surgery. The tumor was removed in February. And Ken's erratic blood sugars became more stable than they had been in years. And his weird "episodes," that I have written about in previous posts, ended. And his high blood pressure became a bit on the low side--and we breathed sighs of relief. But his pain continued, and his weight loss continued unabated. Tests revealed nothing wrong. He tried stronger and stronger pain meds. Alarming loss of weight (and height) continued, along with fatigue, worsening depression, and general illness.<br />
<br />
I won't retell the whole story. I wrote in September that after multiple visits to Mayo Ken was told he likely had a rare kind of Rheumatoid Arthritis or some other rheumatic disease. And his knee replacement, the one he had about ten years ago that had never been right, would have to come out. There would be no treatment for the rheumatic disease until the knee was dealt with because treatment for the RA would increase his chance of infection, and taking the medication could even prove fatal if there was hidden infection in the knee. The knee surgery would be extensive but needed to be done "as soon as possible."<br />
<br />
Back in September, I wrote that Mayo doctors requested that the procedure be done there. The Veterans' Administration denied the request. He would need to come to Milwaukee. Not long after that, we were informed that he could expect to soon have his "fee based" status changed. That means any VA payment for services outside their system would end and he would be assigned a doctor in the VA clinic. <br />
<br />
Earlier this month Ken was finally assigned a primary care physician at a VA clinic about a half-hours drive away. The clinic was reasonably spacious, and the staff was pleasant. We spent nearly three hours there, and we really didn't explore anything in any depth. The doctor, who seemed competent, was forthright in acknowledging that he had not looked at the numerous records from Memorial Hospital in Sheboygan, St. Luke's Hospital in Milwaukee nor anything from the numerous visits to Mayo. He simply didn't have time. <br />
<br />
Then, a few days later, we went to Milwaukee to the "big VA" for a visit with an orthopedist. We are still waiting for the knee surgery that needed to be done, "right away." I have no desire, nor does there seem any point, in detailing the numerous frustrating reasons for delay.<br />
<br />
I couldn't help but contrast the VA with Mayo. The VA is overcrowded. The buildings seem always in need of paint or repairs. The furniture is a bit shabby. The magazines are sometimes years old. Scratches abound on walls and at the bottom of doors. There is no parking ramp with elevators, just a big sprawling, always-full parking lot. No beautiful artwork at the VA either. Instead the walls are graced with the same posters that have been there for decades. No music and no beautiful atriums or highly-polished floors. No Chihuly blown glass here! However, the people at the VA are helpful, and the majority of the staff, though obviously sometimes overwhelmed, seem to care.<br />
<br />
The orthopedic clinic waiting room was overheated and very crowded. On a table with the usual dated magazines stood an ugly plastic rubber tree plant. The pictures on the walls were badly faded. We sat in the waiting room for well over an hour. When we finally got to see the doctor, he apologized, saying that the other ortho doc was out sick. After the usual exam and review of Ken's history, the doctor told us that it was clear the knee replacement was loose and it had to come out. He ordered more tests to try to discover any infection. He scheduled some sort of special three-stage bone scan that will be done in January. Then he told us that surgery would have to wait for three to four months. The waiting list is long and they are overwhelmed--too many veterans and too few operating rooms. He said the surgery might be able to be "fee-based" meaning it might be approved to take place outside the Veterans' Administration system.<br />
<br />
BAM. BAM. BAM. That is the sound of me beating my head against the wall. Not really, of course, but inside my own imagination. Hadn't we all but begged for that, back in September? We waited nearly four months only to be told that we might be able to go elsewhere.<br />
<br />
And he suggested that Ken not wait to schedule the appointment with a rheumatologist. Even though treatment from those doctors might have to wait till the knee procedure was healed, it might be a good idea to meet. So we scheduled an appointment.<br />
<br />
And, as it turned out, something surprising happened. More about that soon. Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com1tag:blogger.com,1999:blog-13173725.post-1369033248882577472013-09-28T12:05:00.001-05:002013-09-28T17:05:15.199-05:00Time Keeps on Slipping: Unpacking the Pile of BoxesThat last post went in a direction I hadn't planned. Now, isn't that ironic? I just realized it and laughed as I typed that.<br />
<br />
I've written about The OASIS at St. Nazianz on this blog. There is a link in the sidebar to OASIS posts, in fact. It started just about one year ago. Tonight will be our last meeting together, at least for a while. Maybe it will be resurrected. I have no plans. I am sad, and I have many questions. Many, many unanswered questions. My deepest questions have never been answered. In spite of the sadness and the questions, I feel peaceful about my decision. There is only so much <em>me</em> to expend, and I'm stretched beyond what I think is healthy. I know some precious people are deeply disappointed. I would never have started The OASIS if I had known what 2013 was going to bring. How good it is that we do not know the future. As someone said to me recently, "If we did, we'd never get out of bed." There are other reasons to stop this ministry as well, and it is difficult but has to happen.<br />
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I am still trying to put together my teaching for tonight. Feeling a bit blank about that. I love teaching scripture and I love interacting with people...<br />
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Perhaps my official ministry days are ended. I know, that doesn't mean there is nothing left of value for me to do. I am grateful for that.<br />
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Our daughter, Kris, and her husband and kiddo are moving in today and tomorrow. Our house is not large, so stuff has to go. When I resigned as Jubilee AG's pastor, it was not my plan that I never pastor another church. I knew who I was, knew what my gifts were, knew I had more to do. I packed up my books and "ministry stuff" and stacked them in the basement, figuring I'd unpack them when needed. Lots of people told me things like, "God never ignores a willing servant. You won't wait long." Or, "Something is coming. Something big. You have so much to share." Or, "It will happen. God never closes a door without opening another." Where is that in scripture? I've come to hate those little "christianese bits of wisdom" that sometimes get quoted more than the things that actually are in the Bible. Five years have passed and I have avoided the pile. <br />
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This was the week I had to open those boxes. That is why I found myself humming, "Time Keeps on Slippin'" off and on for days. <br />
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So many memories. So many decisions to make. Life has happened while I was making other plans. <br />
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I tried not to get distracted by contents of the boxes. Tried hard to just sort into piles. <br />
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Keep handy--I might need this. <br />
Keep in storage. <br />
Toss in the trash. <br />
Take to the thrift store. <br />
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The trash pile grew the fastest, and that made me cry. As I tossed lots of things in the trash and also watched my "thrift store" pile get higher, I almost felt (foolish I know) that I was throwing life away. Cards and letters, notebooks from long-ago studies....An A in Dr. James Hernando's difficult but excellent Hermeneutics Class...still proud of that. A theme paper about divorce and the church. So many notebooks and class notes and papers that have travelled with us for years. An old edition of "Enrichment," the magazine for Assemblies of God clergy. Why had I kept that for decades? Ah, the title article is, "Women in Ministry." A good article. My transcripts and the bulletin from graduation. Sermons written for homiletics class, some preached and others not. Resources I had collected to use for teaching or preaching, some utilized and some not. It was hard to get rid of the ones I had saved for years. I had lots of great stuff. And now we have the internet and many ministers don't have much stuff anymore. <br />
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My sheep collection had to go. I kept two, but they went into a box for storage. My kids will get rid of those sheep when they sort my stuff after I'm gone. Ha! My diploma, license to preach, ordination certificate and picture of me and Ken with then-superintendent Arden Adamsen and his wife Glenna--those went into storage. Ditto what I said about my two saved sheep.<br />
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Hey, here was the copy of <em>Mutuality</em> magazine that featured my article, "Is the Church Feminized?" I had a flash<em> </em>of the joy I'd felt at having my words appear in published print! Here were copies of my poem, <a href="http://everydayliturgy.com/fathers-daughter/" target="_blank">"Father's Daughter" that was published online at </a><em><a href="http://everydayliturgy.com/fathers-daughter/" target="_blank">Everyday Liturgy</a>. </em><br />
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The hardest things to eliminate were the books. I'm a bibliophile from early childhood on. Books bring back memories. So many books and so much to learn and know and do. A few of my really good textbooks had travelled with me for decades. How had so much time passed in a blink? They went to St. Nazianz Christian Center and I hope some aspiring preacher stops in to their thrift store. <br />
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The books I couldn't stand to part with went into a box for storage. They turned out mostly to be the books from <span id="goog_1853186003"></span><a href="http://www.blogger.com/">Christians for Biblical Equality<span id="goog_1853186004"></span></a>, my beloved and life-changing CBE. When I found them, an evangelical organization all about women and church, my world opened up in an astonishing way. CBE books are almost never found in your average religious book store, but they are some of the best books I have. Here are titles for a few of them,<br />
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"Daughters of the Church."<br />
"Men at the Crossroads" (just in case you think I don't care about men)<br />
"Why Not Women?"<br />
"What Paul Really Said About Women"<br />
"Community 101"<br />
"Heirs Together"<br />
"Equal to Serve"<br />
"Women in Ministry Today"<br />
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Ah, that last one was dog-eared, but it wasn't a CBE book. Years before I ended up studying for a theology degree, I had purchased a book published by Logos called "Women in Ministry Today" by Helen Beard. The book scared me. I was drawn and repelled at the same time, thinking it was interesting and thought-provoking but too radical for me. I figured she was some sort of "women's libber." I can still hear my mother's tone and see her expression the day she asked me if I was becoming one. Oh no. I put the book on the shelf and it stayed there. But I kept it. Her painstaking scholarship and her love for scripture was undeniable. I smiled as I flipped through a few pages. I no longer find her book radical. <br />
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I sat on a small love seat to give my back a break and I let my mind wander to days before Ken and I were ministers. I was surprised but happy about Ken wanting to be a missionary. I figured it would be difficult, but I am usually up for a challenge and I always wanted to do something significant for the Kingdom of God. So off we went to what was then called, Trinity Bible Institute, Ellendale, ND, with visions of Europe in our heads. I won't bother trying to explain why we figured it would be Europe for us. In the Assemblies of God, it was preferred that couples who planned on going overseas would have no more than two children. So that is what we did. We had Joshua, our second and last child not long before leaving the USMC to head for North Dakota. Where was North Dakota, exactly? Wasn't it terribly cold there? <br />
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When we were in North Dakota, I found another book that rattled me. This one was by Kenneth Hagin called, "The Woman Question." Hagin's book stops well short of affirming many of the things I now believe, and it isn't even all that well-written. Those CBE books are far better written and the scholarship is superb. However, there was no CBE yet. This was one of the few books in print on the subject. I still have that one too. Not because it is a great book, but because it shook my world and started a theological battle in Southern-Baptist raised me. I started thinking for myself. <br />
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I've written on this blog in years past about the day that our instructor in a "Women in Ministry" class, Rev.Rosa Mae Wead, pointed her finger at me as she fairly shouted at a room full of women who were married to men studying for the ministry, "I asked about why YOU are here, and all I'm learning is why your husband is here. Aren't any of you women called to <em>preach</em>?" <br />
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"Sister Wead" had lived an amazing life. She had been a travelling evangelist, a church leader, an educator and much more. She had asked us why we were in her class and in response everyone had explained what their husband was going to do and how they were going to help. Our usually gracious and very ladylike instructor got more and more frustrated and then she exploded, glaring and pointing right at me, who was seated smack dab in the middle of the front row of her class. <br />
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When she shouted that question, almost every woman in the room sat in stunned silence and then burst into tears. Imagine! A classroom full of weeping women.<br />
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That class continued long past its scheduled end time. There was a genuine visitation of God's Spirit that I've never quite seen the like of since. Several of the women admitted that they had indeed felt such a call, but they did not want to be in competition with their spouses, had been told they were "unbiblical," had been patronized or minimized or shooed back to the appropriate place. Some just stared as Sister Wead give us a short history lesson about women leaders and preachers. It was a life-changing moment. Sister Wead had cancer but most of us believed she would get better. She had a powerful ministry and was a woman of great faith. In fact, that evening was the last time she taught a class. She died not long afterwards.<br />
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I was convinced, after years of praying and studying and questioning. Women could be preachers. Where were they? Why hadn't I seen any? <br />
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Later, when Ken was a pastor, I struggled with my own call. I won't detail all of that. But when clergy couples got together I tended to want to hang out with the guys. I am sad to say that I found their conversation more interesting and thought-provoking than the women's. I loved my husband and my children deeply, but I didn't want to just talk about my kids, or recipes, or what my husband was doing. I don't mean to be proud about that. I sometimes found myself wondering if some of the clergy wives I met if truth be told, were like my classmates. If challenged, would they weep and would I see a very different side of them?<br />
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That was over 30 years ago. Eventually I came to peace about the whole thing, surrendered to a plan I did not understand, and obtained my clergy credentials. I ministered alongside my husband, encountered some of those wrenching transitions. We never did go overseas. That is a long story that caused deep pain for a long time. <br />
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Eventually Ken realized it was me, not him, who was cut out to be a pastor. He did become a missionary, a "nationally recognized home missionary with the Assemblies of God" actually. That's what the official certificate says. As I've shared, he stopped working in December and has not been back. He spent 22 years ministering to prisoners as a chaplain. One of the other Wisconsin Department of Corrections chaplains recently wrote him a get-well note, saying he was saddened to hear of his forced retirement and adding, "That makes me the new senior among us. I'd rather not be."<br />
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I need to stop writing and get something together to share with my friends at The OASIS.Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com4tag:blogger.com,1999:blog-13173725.post-83992564922783406042013-09-27T14:57:00.002-05:002013-10-13T12:17:41.851-05:00Time Keeps On Slippin' and Transitions Keep Coming<iframe allowfullscreen="" frameborder="0" height="344" src="//www.youtube.com/embed/OnlTrq6wLf0" width="459"></iframe><br />
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I have been singing this Steve Miller classic all week. In the 70s, when the song was a hit, I got married, birthed two children, moved away from California (never to return except on vacations) and embarked on a theological struggle. I did not set out to do that last one. It just happened as I matured and asked questions and became a more astute observer of the world. I'll write more about that in another post.<br />
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What I did not do much in the 70s was think about aging or changing.<br />
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I was busy. I thought about being a good wife to my Marine husband, about being a good mom, about work, about how to live reasonably on a tiny budget, about getting through the next move. We moved from the San Fernando Valley to Oceanside's Camp Pendleton, then to Camp Lejeune in North Carolina, and in Ken's final duty station, to Washington, DC. In the 80s we moved to North Dakota (what a shock to my California system <em>that</em> was!) and I earned a theology degree. I hadn't planned that.<br />
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Come to think of it, not much in my life is what I planned--except being married to Ken, who I met when we were teens.<br />
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My life has been all about transitions. They come to everyone, but for reasons that are a mystery, transition for me has been nearly constant. Constant transition. Hey, that is an oxymoron, but true. I have often found myself envying those whose life seems to have been comfortably settled and stable. I am surrounded by Midwestern folks whose forebears came here and who today are happy to have their family all living within 100 miles. As for me, I find myself homesick for a place that never existed, a stable family that never was, a life I never had. I loved my family, but contrary to what many people seem to think about me, my family life was often unpredictable, bewildering, confusing and sometimes frightening.<br />
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When I married Ken, I thought my life path was pretty set. I expected that Ken would, as he had planned, be a "lifer in the Corps" and retire as a youthful 40-something with a nice pension. He'd go to work for some private company and make good money as a programmer or a systems analyst. I'd be a stay-at-home mom. I never thought beyond the "mom" stage. That is what women did in my world. <br />
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Change is constant for military families. It is what you sign up for if you are a service member or you choose to live life with one. Making friends only to lose them, finding a church only to depart, developing something so you can turn it over to others--that was a given. But it is change that is generally expected as part and parcel of military life. So I expected transitions, but I never expected most of the ones that came.<br />
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A big one, early on, was that after nine years serving Uncle Sam, Ken decided not to reenlist . His lifelong dream had changed and he had new goals. He was going to be a missionary. Some people, back in the day, found that amazing. A Marine turned missionary? So we went off to the praries of North Dakota. Ken got a mostly free education in return for helping the school set up its first computer system. Very primitive by today's standards! And, as the spouse of a student, I got half off of my tuition. An offer we couldn't refuse!<br />
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When I need to remember when something occurred, I first think, "Where were we living?" followed by remembering when a child was born. What was Ken doing at the time? Was Ken the Marine who had a stellar computer programming career, or a student, or a pastor or a fuel truck driver, or a chaplain? Was I working? Studying for midterms? Struggling through my purpose in life? Working with teens? With adults? With children? Was I teaching a Bible study, or was I preparing sermons? Was I trying to forget that I felt called to something more than being a good pastor's wife? Were we in Ellendale? Tomahawk? Luck? Grantsburg? Frederic, or Plymouth or New Holstein? Was I an Elderly Benefits Specialist at the Department on Aging in Polk County? Or was it at Legal Action of WI in Milwaukee? A Long-Term care Ombudsman with the Board on Aging? Was I a pastor's wife or was I the pastor? I have "worn a lot of hats" in my life. Sometimes several at once, making me think of a favorite book from childhood,"The 500 Hats of Bartholomew Cubbins" by Dr. Seuss.<br />
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Life has been a series of corners turned. I mean unexpected, unplanned, sometimes bewildering, gut-wrenching corners. The only constant of my life has been that a change would come soon. Another transition. Another time to regroup, rethink, remake and reform. <br />
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The transitions were sometimes exciting. I have never been a person who feared change. I usually see change as a good thing, and I know that it is true that nothing lasts. Since change is inevitable, I have chosen, most times, to embrace it and make the most of it. I am adaptable, and I refuse to be "set in my ways." I remember that when my father said that about someone, I knew it was a bad thing. I have resisted being "set in my ways" all my life. <br />
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Along the way, as I tried to figure out who I was and what I wanted to do or be, time has slipped into the future. A future I never imagined. I got a big dose of time-slipping reality this week.<br />
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This time of change is a little harder. More about that in a future post. For now, my lunch is finished and I need to put on my Insurance Agent hat and make some phone calls.Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com1tag:blogger.com,1999:blog-13173725.post-54474202775622742522013-09-20T10:44:00.001-05:002013-12-18T20:46:15.702-06:00Ken's Ordeal, Part 10: We Come Full Circle Ken, and our daughter, Kris, arrived home late last night from the latest Mayo excursion. I didn't take Ken this time because of scheduling conflicts. And it seems we have at least a partial diagnosis. And with that diagnosis, I'm trying to think towards the future. Having any diagnosis, after nearly a year, is a victory of sorts. <br />
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Yesterday they did a nuclear imaging scan that is aimed at locating inflamation in the body. This morning Ken told me that it was clear his joints were "on fire." He has rheumatoid arthritis, apparantly a "raging case." He is in the 10 to 20% who have a version of RA that does not show up with the usual tests and does not respond, even a little, to steroids. <br />
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I am trying not to think of the rheumatologist at St. Luke's Hospital in Milwaukee. Nor the one at the Aurora Clinic in Menominee Falls (he did mention rheumatoid arthritis, but did nothing except prescribe steroids that did not work and then abruptly resigned and went elsewhere). Nor the one at the Marshfield Clinic. Especially that guy--the one who announced with complete confidence that Ken did not have any sort of rheumatic disease but clearly had carpal tunnel syndrome and diabetic cheiroarthropathy. <br />
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Allow me a necessary digression for a bit. I have mentioned that Ken had a knee replacement done some time back, and it was one of the relatively rare knee replacements that turned out to be a total failure. Because of his high risk of infections, his serious "venous insufficiency" (lack of blood flow, mostly due to blood clots) and other issues, the orthopedic surgeon here has told Ken that he would not even consider taking the prosthetic out and putting in a new one. So he has endured a swollen and painful knee for over a decade. <br />
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Now, the swelling and pain have increased to an alarming level, so we had an orthopedic doctor at Mayo take a look, since we were there anyway. As I mentioned in the last post, he says the prosthesis is loosening from the bone and recommended immediate surgery. He also said that even though tests have shown no sign of infection, there coudl be an infection in the bone near the knee that could only be verified by taking a tissue sample during the surgery. He said "In our world we would assume this knee is infected until we rule it out." <br />
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Remember that back in spring Ken had his third bout with serious cellulitis (a leg infection)? He had a follow up visit with the infection specialist here. The knee surgery issue came up. The doctor's advice was "I agree with the ortho surgeon here. I absolutely do not recommend it. The complications could be dire, and there is no way of knowing if the next knee replacement would be any better than this one." He described several horror scenarios that I won't bore you with, but it may very well not end well at all if Ken has knee surgery again.<br />
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Additionally, as I wrote last time, the knee surgery would be done at the VA hospital. He did advise that if Ken decided to go ahead with the second knee replacement (frown and head shake) that he should be notified because of the serious danger of infection.<br />
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Ken decided to forego the surgery until he "couldn't walk anymore." <br />
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Back to Mayo. After yesterday's tests, the Mayo rheumatologist told Ken that the Rx he would give him would cause lowered immune system function. In short, if he gives him the Rx that he hopes will help turn off the inflamation, and thus reduce his excruciating pain and his ongoing joint deterioration, he could cause any hidden infection in the knee to enter the rest of Ken's body. He says it is absolutely imperative to do the knee surgery before anything else is done.<br />
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And here we thought the knee was a "side issue" at Mayo. And we are trying not to think of Ken's numerous bouts of infection and what could happen with an Rx that causes even more liklihood of infections.<br />
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He recommends the knee come out right away. Then, at some future date when danger of infection is past, he will try Ken out on a drug to deal with the RA. And then, if necessary, the surgery on shoulders and elbows to release the nerve can be done. He does agree with the dapper hand surgeon that there is clear nerve inpingment, he just disagrees on the cause. So the surgery that was scheduled for next week is now cancelled. <br />
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The doctor strongly suggests that the knee surgery be done at Mayo so that the team there, orthopedic specialist, infection specialist, rhematologist, etc. can work together to give Ken the most hopeful outcome. It is not, however, likely that the Veteran's Administration will agree. He did tell Ken that he would "say whatever I need to to try to convice them of the complexity of this." <br />
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Ken is calling the VA today to see if we can get an orthopedic surgeon there, or someone in VA administration, to talk with the doctors at Mayo. Either way, knee sugery must be done right away. In Ken's case, this may involve (even with all horror scenarios aside), weeks of recuperating and bed rest. But the decision is made. No knee surgery, no RA meds. So...<br />
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And as I'm trying not to think of the doctors who told Ken that this "isn't rheumatalogical," I'm also trying not to think of how we said, months ago, "This has to be something systemic. It sure seems like rheumatoid arthritis."<br />
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We must focus on the next step--somehow negotiating the VA system to get a doctor who can speak to a doctor at Mayo. And if the VA insists that the surgery be done in Milwaukee, getting a plan in place. If only every doctor we see didn't put in the notes, "....very complex case..."<br />
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But we have a possible diagnosis. For that, I am thankful. And I am thankful for those who are still thinking of us, praying for us, and reading these posts after all these months. (Not nearly as many, of course.) Thinking of all of you, some of whom have never met us in person, is overwhelming. <br />
<br />Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com12tag:blogger.com,1999:blog-13173725.post-84692196790740172632013-09-14T20:52:00.000-05:002013-09-16T16:39:14.533-05:00Ken's Ordeal Part 9: An Answer--But WaitLast time I wrote about the visit to orthopedics to have Ken's knee checked out. Immediate surgery was recommended. We have since confirmed that the surgery will need to be done at the Veteran's Administration Hospital in Milwaukee. But doctors are disagreeing on that surgery. I'm not talking about that in this post. Maybe I'll write about that sometime in the future. One thing at a time, I guess.<br />
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Our September trip to May approached. This time, cost notwithstanding, we decided to find a motel with a pool. Days at Mayo can be quite wearying and a sauna, hot tub, and pool sounded like a good end to a day at the clinics. We opted for the venerable Kahler Hotel. The Kahler is a bit faded and worn, but still retains evidence of its former glory, and it includes several restaurants and a Starbucks. It also has a tunnel (don't think dark and moist--think lined with pricey shops) that leads to the Mayo complex. <br />
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Our room is on the 8th floor. I'm sitting in it now, typing this blog post at a small desk. The window is open and a cool breeze blows the curtains. An exausted Ken is snoring softly a few feet away. The room is <em>tiny.</em> It might be the smallest room I've ever paid money to stay in, but the furniture is lovely and the small chest of drawers has a marble top. The armchair touches the desk chair. There is no room for it to be placed further away. <br />
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When we first opened the door yesterday, we were quite surprised. <em>Well,</em> we reasoned, <em>we</em> <em>won't be spending time in here. We'll be over at Mayo.</em> And unlike our previous trips, all appointments were on one day. This visit to Mayo was mostly centered on the nerve compression and possible surgery to correct it that I mentioned two posts ago in Part 7. <br />
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The long drive from the east side of Wisconsin had been a rather quet trip. There just isn't much to say at this point. We were hopeful and a little awed the first trip here. This was our fifth trip, and that expectation has worn off.<br />
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Ken was scheduled for an early-morning blood draw today, so he was gone from our room well before seven. As usual when we come to Rochester, I had slept fitfully. I tried to stay asleep after he left, but I was drawn out of bed by a golden halo of light that shone around the heavy drapes and directly into my eyes. Pulling back the curtain I was greeted by blazing sunlight in a bright blue sky. My spirits rose a bit. "Gonna be a bright, bright sunshiney day..." -- I heard the song in my head. <em>May it be so, Lord,</em> I said. That is about as much prayer as I can manage these days.<br />
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The orthopedic surgeons are housed on the 15th floor of the Gonda Building. The Mayo Building is at one end of a long, windowed hallway, always full of light, and the Gonda Building is on the other end of the hallway. "The Mayo Clinic" consists of both buildings, plus more. The Mayo Building clinics are somewhat varied in appearance, but the large Gonda Building clinics all look the same. Each one has striking artwork. Each clinic area is lined with beautiful wood. Each clinic is filled with dozens of comfortable chairs. Each has a long reception desk with two or three people present to check folks in. Sometimes it is disorienting. <em>Are we on the 5th floor, the 8th floor, the 15th floor? </em><br />
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We are eventually called to Door A and we move down a gleaming hallway, past exam room doors that each have a bank of at least ten colored lights. Some doors have nearly all ten lights lit, others one or two. Blue, yellow, red....we don't know what the rainbow array signifies, but it is part of every Mayo Clinic exam room. We've started to joke about it.<br />
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Soon we meet the chief resident on the floor. He, like all Mayo doctors, wears a suit and tie. No knit golf-types shirts here, and no lab coats. It strikes me that we have yet to meet any female doctors at Mayo. <br />
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The pleasant and efficient resident looks about 19, but I know he must just look young for his age. He tells me he is in the last year of his five-year residency. He asks lots of questions, reviews Ken's MRIs, puts him through a series of painful tests. Then he exits to find "the boss," an orthopedic surgeon specializing in hand issues. <br />
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The boss turns out to be Indian or Pakistani, a small, dark man with an astonishing amout of hair product in his rather long curls. His suit looks expensive and is beautifully tailored. His shoes were amazing. I look at them and then at Ken who mouthes, "See his shoes?" when the doctor is looking away from us. The shoes are narrow and pointed, a highly-polished tan and cream set of wing tips. They are gorgeous. Ken later commented, "That pair of shoes must have cost more than all the shoes in our closet--yours and mine together." <br />
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He repeats everything the resident just did, and he carefully examines Ken's hands. He notes the deep divits (the resident called it interossei wasting) and the weakness, etc. Both doctors agree. This hand problem, and likely much of the hand pain, is due to compression of the ulnar nerve. (That nerve we call the "funny bone" that hurts a lot when you happen to whack it just right.) As we expected, he wants to surgically release the nerve. <br />
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He also talks about shoulder surgery. His description is complicated. We are not sure exactly what is involved, but he says he will fix the shoulder and the elbow during the same outpatient surgical visit. Each will be minimally invasive. The pain should be reduced by at least 30% to as much as 90%. He will start with the left shoulder and elbow and after those heal he will schedule the same surgeries on the right shoulder and elbow. After much conversation, surgery is scheduled for September 26th.<br />
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We should be feeling better, because at least there is a plan and a partial diagnosis. We aren't. I am afraid to be relieved, and Ken is thinking about how the doctor told him that the surgery will only stop the deterioration from growing worse. It will not restore hand function nor hand strength. The nerves are dead and the muscles are atrophied.<br />
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Later he visited another section of the orthopedic clinic where he was given an ultra-sound-guided injection into his bicep. This was the fourth time his shoulder or arm has been injected with cortisone. It never helps, and he wanted to refuse the injection but the doctor explained that it was in a different place than before and if it helped, or even if it did not, it could help with a diagnosis. The numbing agent never seems to work either, and the shots are always painful. This one, Ken later said, was much worse than any of the others. When he approached me, back out in the clinic lobby, his eyes were bleak and I could tell he was fighting tears. <br />
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In a choked and muffled voice he said, "The only thing I was looking forward to this time was a sauna, sitting in the hot tub with you, and then a swim in the pool. I can' t do any of that because of the injection. Too much danger of infection." He was frustrated and angry and I knew the tears were not about the pool.<br />
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We returned to the hotel for a quick nap, and we both went back to Mayo feeling somewhat better. The next clinic was on the Mayo Building side, in rheumatology. The rheumatologist has seen Ken before, and he ordered MRIs some time back. There had been no follow up visit scheduled, a mistake on someone's part. A different doctor had noticed and had insisted Ken have a follow up with the rheumatologist, even though no one really thought that there was much evidence of rheumatic disease. <br />
<br />
The rheumatologist has an interesting Australian accent. He also wore the Mayo uniform of a white shirt, suit and tie, but he couldn't have looked more different that the surgeon we'd met earlier. His shoes were scuffed, and his worn tweed suit coat gapped when he sat down. He had a rather abrupt manner, but he asked Ken detailed questions (many more than on the first visit two months ago). He looked at the lab results, reviewed cortisone injection results, pondered the list of prescriptions Ken has tried. The MRIs he had ordered were of poor quality because Ken was in too much pain to lie still, but some things were visible. <br />
<br />
Gazing at the MRIs, he looked perplexed. He made a phone call to someone who he said was "a whiz at deciphering these things" and he told the woman at the other end of the phone that he wanted her advice on a "very complex case." After several minutes of conversation that was a foreign language to us, he thanked her, hung up, and turned to Ken.<br />
<br />
"I'd cancel the surgery you have scheduled for the 26th."<br />
<br />
"What?"<br />
<br />
"I agree, your symptoms indicate compression of the ulnar nerve. But even though your lab tests show no inflammation, and even though all the different steroids you have been given, both shots and pills, have done nothing, I think the nerve compression is caused by widespread joint inflammation. My colleague over at the MRI lab agrees. She says there is 'inflammation everywhere.' I suspect a raging case of rheumatoid arthritis or something similar."<br />
<br />
In about two seconds my mind travelled back to the three rheumatologist Ken has seen in three different clinics before ending up at Mayo. This one is the fourth, and this is our second visit with him.<br />
<br />
"How can that be...?"<br />
<br />
"In very rare cases, we see this. Steroids don't help. Labs show nothing, but inflammation is there. We must do some more tests. No sense having surgery if the nerve compression is due to inflammation and some sort of hidden rheumatic disease process."<br />
<br />
Ken and I nodded wordlessly. Of course. <br />
<br />
He want on, "The symptoms fit, even though the tests do not. Nerve deterioration accounts for the muscle wasting and weakness, but not the swelling you have. I'm scheduling some very specific tests to check for different types of inflammation. I'll talk to the ortho docs. We will do these tests first. If they do surgery, and the real cause is inflammation, they will only make things worse."<br />
<br />
As I pushed Ken's Mayo wheelchair across the atrium to return to the Kahler Hotel, it was once again filled with the sound of piano music. Evening shadows were long, and the beautiful space was mostly empty. There was a smattering of applause, and somehow it sounded as though it came from a great distance, as the musician finished his song. I felt invisible, alienated, small.<br />
<br />
It seems so strange that nothing in these long months has been straightforward. We've lost track of how many doctors Ken has seen now and how many possible causes for various problems have been suggested. <br />
<br />
We talked about how we almost didn't have the follow up visit at the rheumatology clinic. We were grateful someone eventually noticed that omission. Other than that, we don't know what to think. We are pretty numb.<br />
<br />
We leave for home in the morning, and we return to Mayo for the tests on Thursday.Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com5tag:blogger.com,1999:blog-13173725.post-9045050701725880542013-09-02T23:17:00.000-05:002013-12-22T06:32:13.393-06:00Ken's Ordeal: Part 8 -- Changes, and an Offficially Abnormal Test<em>To start from the beginning, just click on the label "Ken's Ordeal" at the bottom of the post and scroll down.</em><br />
<br />
Last December we knew Ken was dangerously ill. I have previously written about the strange mix of symptoms he called "episodes." They had been occurring for years, baffling doctors, but were reaching a point where they were incapacitating. In January, after a frightening visit in the Emergency Room and a subsequent hospital admission, someone finally realized that he had an extremely rare adrenal tumor called a pheochromocytoma or "pheo" for short.<br />
<br />
We were told that it that it had been the source of his increasingly ill health. We heard that it was often fatal and only discovered at autopsy. We were dismayed to understand how damaging it had likely been over the years, but we told each other that when the dangerous and delicate surgery to remove it was done and his recovery period was over, we would have a "KEN IS ALIVE AND WELL" barbecue party in our large backyard. Even though he was quite ill, we were pretty sure he would be feeling well by summer, since the "pheo" was coming out in February. All would be fine in time for a warm-weather party! Things could go back to normal.<br />
<br />
Fall is nearing, and all is not fine. Ken recently said to me, half in jest and half in sorrow, "Well, maybe we will just have a KEN IS ALIVE party." <br />
<br />
If you have read my little "Ken" series (sadly, much longer than I thought it would be) you know that some of his symptoms have disappeared or stabilized, but many problems have remained or even worsened, the worst of which is excruciating pain in his back, shoulders, arms and hands. Methadone supplemented with Oxycontin just take the edge off the worst of the pain, the severity of which has made it impossible to do much of anything. Some days he can hardly talk.<br />
<br />
Many things have changed as long months have passed with no diagnosis for Ken. He has not been able to go to work at his job as a prison chaplain for nearly ten months. A few weeks ago he went to the prison to get some things out of his office and to talk with someone in the HR department. Since I'm the driver these days, I went as well. It was strange. So familiar and yet so different. <br />
<br />
We tried to be at the chapel during a time when inmates would not be there, but that didn't work out. Many inmates were happy to see him. Others told us they had been praying. One looked at me with tears in his eyes, simply saying, "We miss him." I overheard one say to another, "Oh, is that the 'old chaplain'? The one that's been gone?" How strange to realize that he had heard of Ken but never seen him. <br />
<br />
The Department of Corrections will finally be hiring a temporary replacement. When Ken is actually retired (right now he is on disability leave) that person will likely become permanent. When we went to the administration building we were greeted by social workers, security guards, and others, many of whom have sent cards and notes. Some have known Ken for years, and it was difficult to see their not-so-hidden surprise at how much thinner he is.<br />
<br />
Some people think that no longer being employed in the negative environment of a prison would be a relief. They are partly right. Prison can be a toxic place for staff and inmates alike. The last few years have been especially challenging as changes have come that made the ministry Ken tried to do increasingly frustrating. He said to me that the inmates themselves were the least of his struggles there. Ken cared deeply about "the guys" and he felt called to do what he did. He is good at being a chaplain. It wasn't easy, but he tried hard to make the chapel a place of grace, of healing, of respect and acceptance, of peace and light in a dark place. Not being there will be a relief in some ways, but it also means the end of not only Ken's employment but his ministry focus and a large part of his identify. <br />
<br />
Last week Ken's disability insurance company directed him to apply for Social Security Disability immediately. Otherwise they will stop all payments. We figured we'd do this soon, but soon has become <em>now.</em> So I went online and started the process.<br />
<br />
Ken's health insurance stopped on August 31st. Mine too. I found a high-deductible plan and Ken will use the Veteran's Administration (VA) for his medical coverage. While many of the doctors and other employees are excellent and very concerned about veterans, others are not. The worst thing about the VA, however, is the red tape, the seemingly endless forms, referrals, waiting, and so on. Navigating the overloaded bureaucratic system is often a daunting task. Ken is already rated 100% disabled by the VA, so even though he had not used his medical benefits, he is eligible for them on a "fee based" status. This meant that he could continue using his non VA doctors and the VA would pay. We didn't need them to, so we didn't ask. Ken had good health insurance from the Dept. of Corrections.<br />
<br />
When the famous Mayo Clinic gave Ken the go ahead to become a patient, we knew that to try to get his state insurance to pay would involve a battle. Therefore, we decided to utilize his VA benefits for the first time. He made seven phone calls to the VA, trying to get verification that his Mayo visit would be covered. He left seven voice mails. Weeks later, with not one call having been returned, he finally connected with a person on the other end of the phone call. She was very helpful. I'll call her Val for VA Lady. She assured him that the VA would pay for clinic visits at Mayo. That was in May, just before our first trip to Rochester, Minnesota.<br />
<span lang="en-US" style="language: en-US; mso-ligatures: none;"> <o:p></o:p></span><br />
On Tuesday, the day we were leaving for his third stint at Mayo, Ken came into the bedroom just as I was finishing loading my half of the suitcase. He had a blank look on his face, and he said, in an oddly flat tone, "I just got a disturbing call from the VA person." The details were complicated, but the upshot was that Ken was to immediately stop going to his current providers. He was to appear at an appointment scheduled in Milwaukee (about 70 miles away from us) with a physician who would become his primary care doctor. He would have to be assigned the various specialists he might need and appointments would eventually be set up.<br />
<br />
To say I was stunned is not adequate. I can't describe my despair. I felt like a wall caved in on us. I was deeply afraid, and I was furious.<br />
<br />
I lost it. <br />
<br />
Losing it is not something I typically do. But I immediately called Val and told her I was extremely angry and upset. I told her just what I thought. I told her I could not drive Ken to Milwaukee for his numerous appointments. I told her I had a job. I told her Ken was too sick to wait months for the VA to get him scheduled with all the people he would need to see. I told her some other things...and then she interrupted me. <br />
<br />
She said sternly that she did "not appreciate being yelled at after trying my best." She informed me she had been working hard to get Ken what she thought he had asked for. <br />
<br />
Turned out that for whatever reason, Ken and Val had a huge failure to communicate a while back. Neither of them realized that something was set in motion that Ken did not want. I don't think I was yelling, but I can understand why it sounded that way to Val. I know how it feels to be chastised unfairly. I also know how it feels to be part of, or dealing with, a bureaucracy and to be trying, in the middle of red tape, to do a good job for people. I was embarrassed and ashamed. <br />
<br />
So then I lost it in a different way. I tried to swallow the huge lump in my throat, tried to hold back my tears, tried to stuff my sobs back inside. I failed. I couldn't speak for crying. Val, on the other end of the phone, asked, "What do you need me to do?" I couldn't respond. I was afraid she'd hang up on me, but she must have realized that I was sobbing, even though the phone was away from my face. Eventually I managed to pull it together enough to speak. Thankfully, Val listened. She said she would undo what she could of the process she had begun. She would cancel the appointment in Milwaukee. We could continue to visit Ken's docs here, for now. The day will come when that is not allowed. We don't know when that day will arrive, but she told us to expect a phone call soon from the local VA clinic. For now, outpatient procedures at Mayo would be allowed, but any surgery would have to be approved and would likely have to be done at the VA hospital.<br />
<br />
Numbly, we loaded the car with our suitcase, our satchel of medical paperwork and a small ice chest. Once more, we headed west for Rochester. After a frustrating day with many delays we arrived and found our motel. We were mostly silent as we ate a late dinner, unloaded our stuff and went to bed. Neither of us slept well. When I did sleep, I had bad dreams.<br />
<br />
Next morning we walked the short distance to the clinic It all had an eerie sense of <em>deja vu</em> as we made our way down a wide passageway lined with drawings of the Mayo brothers, into the beautiful marble-floored Gonda building and under the Chihuly glasswork. This time Ken could not walk far so I pushed him in a Mayo wheelchair. The flowers were more lush than last time, but otherwise all was the same--beautiful buildings, helpful volunteers, interesting artwork, music in the sun-drenched atrium and the exhausting routine of being a "Mayo checker" which means sitting in a clinic hoping they will fit you in so you can get more accomplished in less time. Almost everyone at Mayo is from somewhere else. <br />
<br />
Ken had a gastric scope, some more lab tests, and a strange test to check function of the autonomic nervous system. We have appointments in September with rheumatology and the hand clinic to talk with the surgeon who expectes to operate on his elbows. "Checking" at those clinics was not successful. We hope we don't hear from the VA prior to mid September when we are scheduled for the actual appointment. <br />
<br />
He visited an orthopedist who examined his grossly swollen left knee and told him it would need immediate replacing. The knee replacement he had about ten years ago was a dismal failure, but no one has wanted to do surgery again on that knee--too many possible complication due to Ken's many leg infections and blood clots. Well, now he is losing bone and the pain is intense and it "must be done, and soon." It was refreshing to be told something specific and to be given, however unpleasant, blunt directions. The kind-faced older doctor was telling us how he would confer with a "surgical colleague to get this scheduled quickly" when we interrupted with a short version of the VA story. "Ah," he said. "Well, they have resources in Milwaukee. They will not let you come here. I'll send my recommendations to your home address. You can contact the VA with my consult notes."<br />
<br />
Our last visit was with Dr. Daniels, the internist who has coordinated Ken's many tests and consultations with specialists at Mayo. We both like him very much. He told us that the autonomic nerve test was "abnormal." The autonomic nervous system controls all those things we don't think about; heartbeat, breathing, sweating, digestion and so much more. <br />
<br />
It is strange how it can be a relief to hear bad news. Bad news is better than a continual morass of pain and illness with no diagnosis. <br />
<br />
Peripheral neuropathy is common in diabetic patients. It causes pain and loss of sensation, usually in the feet and sometimes hands and legs. Apparently, Ken has neuropathy of the nervous system on a much deeper level. This is probably due to the undiagnosed effects of the pehochromocytoma, the nasty and rare little adrenal tumor. Since the surgery to remove it in February, his blood sugar levels have been largely stabilized. But the damage is done. <br />
<br />
Dr. Daniels forthrightly admitted that he does not know what that means, exactly. Could it be the cause of weight loss? Low blood pressure? Fatigue and general illness? Extreme pain? Low hormone levels? He did not know. He also did not know what measures could be taken to deal with neuropathy of the autonomic nervous system.<br />
<br />
He will confer with a neurologist this week. He will also try to expidite surgery on at least one elbow on an outpatient basis, before things stop and all depends on Uncle Sam and the Veterans' Administration.<br />
<br />
Speaking of veterans, the day we left for Mayo we received a notice from the Department of the Navy about the water toxicity at Camp Lejeune. They are trying to find all the vets who were stationed there so that they notify people about the possible health effects.<br />
<br />
We are longing for normal, but we both know life will not return to how it was. We are not, and will not be, the same. Change comes, and things never go back to how they were. There is only forward.<br />
<br />
So we, once more, wait. This time we have a diagnosis. We hope for a plan to cope with the nerve damage. We hope to not hear from the VA until we have done all we can at Mayo.Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com8tag:blogger.com,1999:blog-13173725.post-66156031649409006922013-07-26T07:29:00.000-05:002013-12-22T06:30:49.940-06:00Ken's Ordeal Part 7: A Mayo Deja Vu<em>To start from the beginning, just click on the label "Ken's Ordeal" at the bottom of the post and scroll down.</em><br />
<em></em><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9ky7k5L158i0Xx-l48UbbJdGFGCdKG6DiVgm3PaCTyIwCxUNnTllpQC8BALJDazT-I-a_cEkq7Fyx4HEcu1tBVXtSXK4hHJm5VDqWkx0SdAQQ4fA4K9s7We1MQPbVNhjfUAoj8g/s1600/IMG_1316.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9ky7k5L158i0Xx-l48UbbJdGFGCdKG6DiVgm3PaCTyIwCxUNnTllpQC8BALJDazT-I-a_cEkq7Fyx4HEcu1tBVXtSXK4hHJm5VDqWkx0SdAQQ4fA4K9s7We1MQPbVNhjfUAoj8g/s320/IMG_1316.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of the Mayo entrances.</td></tr>
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There is little to say in this installment. Our second trip to Mayo Clinic was mostly for follow-up visits. <br />
<br />
The neurologist had ordered a test Ken had already had done in Sheboygan. It is a nerve function test, very unpleasant and quite painful. Ken was not anxious to repeat it, of course. It was a good thing he had it done again, however, because this time some damage was revealed. Perhaps the difference in the two tests is because Mayo's is more sophisticated, or perhaps the damage has grown worse and so showed up. Anyway, he may have a compressed ulnar nerve in both elbows. This is the result of thickened ligaments/tendons--a consequence of uncontrolled diabetes. Remember the "damned pheo" and how it caused wild swings in blood sugar? This compressed nerve could be the cause of <em>some</em> of the deterioration, pain, and swelling in his hands and may require surgery.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1mFH4Fq7RZPnzhuAFAYWT2feWe890iQ7lNq-NsKpL1d98eU_OWkzLk-1xn_nx64gHaBwe_7vJ3f7rvuEZLAAQMNxBF7PtBZrUJ3UG_DBZNK4NidqLQEV0ZVN8ZfC1Ih0AgruTlA/s1600/Mayo+Entrance.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="206" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1mFH4Fq7RZPnzhuAFAYWT2feWe890iQ7lNq-NsKpL1d98eU_OWkzLk-1xn_nx64gHaBwe_7vJ3f7rvuEZLAAQMNxBF7PtBZrUJ3UG_DBZNK4NidqLQEV0ZVN8ZfC1Ih0AgruTlA/s320/Mayo+Entrance.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The front entrance.</td></tr>
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He spent time with two orthopedists who examined his shoulders and reviewed the shoulder MRI results. There is some neuropathy (diabetes again) but nothing that would account for the limit in range of motion and the extreme pain.<br />
<br />
As for his general illness, weakness, low hormone levels, low blood pressure, continued weight loss, etc. there were still no answers.<br />
<br />
We met again with Dr. Daniels, the internist who started the process at Mayo. He was dismayed about the Camp Lejeune situation. He told me he had read the entire article and had then done some follow-up research. Unfortunately, there are no tests that would, at this late point in time, confirm that the toxins in Lejeune's water had caused any of Ken's problems. "That doesn't mean they didn't" Dr. Daniels said with a shake of his head, "just that we won't be able to confirm it."<br />
<br />
He wants Ken to come back for another round of lab tests that will look for toxins, heavy metal poisoning and other issues and also wants him to visit the Gastroenterology Clinic. There are other diseases that can cause neuropathy besides diabetes, and some of them arise in the digestive system.<br />
<br />
He is concerned that Ken may have neuropathy that effects not only peripheral nerves but also the autonomic nervous system--the delicate workings that we don't think about. Breathing, heart beat, weight gain or loss, blood pressure, perspiration and so on. We are trying not to think of the possible consequences of damage to the autonomic nervous system.<br />
<br />
We go back in late August, the earliest appointments we could get.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC0rXw20yONPtb2QmB_FwhP-rohyphenhyphenEZ54OhuiCTYo6D6-TocvEb9eKamsUJnj0kJuBuF3O7SeAPi1O9tgpDK7aDU4B-IupdufQqLem87jt4i9AK2ByOgDlko9yTFFTSBOvMpQoVnQ/s1600/IMG_1315.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC0rXw20yONPtb2QmB_FwhP-rohyphenhyphenEZ54OhuiCTYo6D6-TocvEb9eKamsUJnj0kJuBuF3O7SeAPi1O9tgpDK7aDU4B-IupdufQqLem87jt4i9AK2ByOgDlko9yTFFTSBOvMpQoVnQ/s320/IMG_1315.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Outside a large street sale was going on with many booths containing jewelry, beautiful artwork, food, and so on. You can see Ken on the bottom right, waiting for me on a bench. It was a steaming hot day but the booths were busy.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoBREEjje_herePi2xquIHvDa6E-EWyFD1hdrcTdHReuZCNIVJS2xzTGBTC7FaDO2WxkV6Qsx1AWEgidjU6XgD90ngwRcNKusZo3Q9jVxaywTfe63b2NvLJtfPaOH-Ewecqv9i-g/s1600/IMG_1318.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoBREEjje_herePi2xquIHvDa6E-EWyFD1hdrcTdHReuZCNIVJS2xzTGBTC7FaDO2WxkV6Qsx1AWEgidjU6XgD90ngwRcNKusZo3Q9jVxaywTfe63b2NvLJtfPaOH-Ewecqv9i-g/s400/IMG_1318.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I took this photo from the 13th floor inside the Gonda Building. On the left is the ultra-modern Siebkens Building, and on the right is the beautifully historic Plummer Building, both part of the Mayo complex. Inside the Plummer Building is a little museum with the original Mayo brothers' offices and other clinic memorabilia. The inside of this building is gorgeous but cameras are not allowed. </td></tr>
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Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com4tag:blogger.com,1999:blog-13173725.post-25400411406152799922013-07-07T17:58:00.002-05:002014-08-31T19:57:56.769-05:00P.S. to the Last Post of Ken's Ordeal: "Camp Lejeune's Toxic Legacy"<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcVSJUFfuEhtkCZtnqeeCfI6xq-npWgMdRydghUbLwH3jqel-Wgq4SiWot31GrN8IEK9FqqRgW3R2YaKYRtG3dzcKXpPfGoFah5K7YKyh_W8QkKZzSC0EyZ33_KVV47Bir5p4S2A/s1600/Lejeune.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcVSJUFfuEhtkCZtnqeeCfI6xq-npWgMdRydghUbLwH3jqel-Wgq4SiWot31GrN8IEK9FqqRgW3R2YaKYRtG3dzcKXpPfGoFah5K7YKyh_W8QkKZzSC0EyZ33_KVV47Bir5p4S2A/s1600/Lejeune.jpg" /></a>I forgot to mention something in the last installment (# 6) that might be significant to someone. <br />
<br />
The day before we left for Minnesota, I was sitting in the waiting room at my doctor's office and picked up an <em>American Legion</em> magazine.<br />
<br />
The cover pictured a little girl who looked strikingly like our daughter, Kristina, at the same age. Opening the cover, I felt a little jolt of surprise. The title article was the same as this post, "Camp Lejeune's Toxic Legacy." Ken was stationed at the Marine Corp's Camp Lejeune, near Jacksonville, North Carolina, for three years in the mid-seventies. Our family, at that time consisting of Ken, me, and our baby daughter, lived at Tarawa Terrace, an enlisted housing neighborhood in Jacksonville, about three miles from the base.<br />
<br />
I was appalled by what I read, and I grew increasingly angry. From the mid '50s till the mid '80s, Marines and their families were unknowingly subjected to alarming levels of toxins, reportedly the <em>highest known levels ever found in the entire nation</em>.<br />
<br />
Click <a href="http://www.legion.org/magazine/213476/camp-lejeune%E2%80%99s-toxic-legacy" target="_blank">Camp Lejeune's Toxic Legacy</a> to see the article for yourself.<br />
<br />
Other links of interest are <a href="http://www.tftptf.com/" target="_blank">The Few, The Proud, the Forgotten</a> and <a href="http://www.veteranstoday.com/2010/02/18/camp-lejeune-marines-put-in-cancers-harmful-way/" target="_blank">Camp Lejeune's Marines Put in Cancer's Harmful Way</a><br />
<br />
An internet search will lead to several disturbing accounts of the water contamination, the slow response of Lejeune's leadership, the lackluster warnings, and the continued efforts to establish links to many mysterious diseases. The little girl pictured in<em> American Legion Magazine</em> died of leukemia. Cancer is the most obvious of the diseases that have been suffered by Marines, former Marines, and their family members in alarming numbers. However, there are many more. To say I am disgusted does not even begin to describe my emotions upon reading this article and doing some subsequent research.<br />
<br />
Will we find some definitive link between Ken's pheochromocytoma, or the other issues he is now struggling with? Likely not. But perhaps this information can be of use, or can help answer someone's long-held questions.<br />
<br />
We will always wonder. Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com2tag:blogger.com,1999:blog-13173725.post-26504154254911603842013-07-06T17:19:00.000-05:002013-12-22T06:28:06.343-06:00Ken's Ordeal Part 6: The Mayo Clinic<em>To start at the beginning, click on the link at the bottom of this post, "Ken's Ordeal."</em><br />
<br />
Among other doctors, we visited an allergy specialist, wondering if perhaps Ken's continued illness could be due to some sort of food or other intolerance. This doctor didn't have any real answers, but he did suggest Ken try out a gluten-free diet. We have both been gluten free for well over a month. No change.<br />
<br />
He also said, "You really need to get to Mayo." But he gave us a "doctor to doctor" phone number and specific instructions of how to proceed. We followed his advice, got a referral from Ken's new primary-care physician, and got an appointment for June 27th. <br />
<br />
We already are incurring some significant medical bills. Our insurance does not extend out of state; Mayo Clinic is in Rochester, MN. We made inquiries to our insurance company with no success--and then it dawned on us both that Ken is rated 100% disabled by the Veterans Administration and so has the VA "gold card." We don't usually access the VA system, since Ken has insurance through the Dept. of Corrections, but after numerous phone calls to the VA, we finally were given the go-ahead for Mayo. The Veterans Administration would pay the bill. <br />
<br />
Then Ken developed cellulitis in his leg. That is a story in itself, and I won't take time to share it. However, this is a severe infection that has twice landed him in the hospital; the last time was for over a month. We were told he would require at least a month of antibiotics and would not be able to travel. However, things cleared up much more quickly than expected, and the infection specialist told us the trip would be all right. <br />
<br />
We awaited the journey, feeling hopeful but also afraid to be too excited. We had been happy to get the referral to the Marshfield Clinic and that visit had been a deeply depressing disaster. The Mayo Clinic, however, is generally acknowledged to be one of the best in the world. Their history is fascinating, their research is wide-ranging and impressive, and their staff is numerous. Since people come from all over, the doctors there have a wider range of experience than elsewhere. Mayo Clinic, Saint Mary's Hospital and Rochester Methodist Hospital form the largest integrated medical center in the world, providing comprehensive diagnosis and treatment for about 350,000 patients each year.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcMQKhIsnMTt27VYFXzUoHfPtYa-kXu4wq1Ey1UNF5rdU9NB44rurPi65M5sD7GPThnSlqIbLVIJZGB91mheaFv3CXaHIWOabfTBZzs_et2KAYhNHG1tQW70dkseG3KVo9PFIDXw/s1600/Noah+Lawnmower+3+.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcMQKhIsnMTt27VYFXzUoHfPtYa-kXu4wq1Ey1UNF5rdU9NB44rurPi65M5sD7GPThnSlqIbLVIJZGB91mheaFv3CXaHIWOabfTBZzs_et2KAYhNHG1tQW70dkseG3KVo9PFIDXw/s200/Noah+Lawnmower+3+.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Noah and Lawnmower </td></tr>
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We drove to Minneapolis and spent some time with our son, Joshua, and his family. It was fun to see our little grandson, Noah, and to catch up with Josh and Stephanie and to spend some time with Keith, Ken's brother. Ken had purchased a bubble-blowing lawnmower toy for Noah, and it was a big hit. We tried not to think about the trip to Mayo.<br />
<br />
But the day arrived, for the two-hour trip to Rochester. The weather was beautiful with temps in the mid-seventies. The countryside was beautiful too, with rolling, lush green landscapes. <br />
<br />
We were grateful not to have to spend money on a motel. It is expensive to stay in Rochester (a beautiful little city) despite "Mayo Clinic rates." Ken has a friend who lives in Rochester and he and his wife were away for the week and graciously allowed us the use of their home.<br />
<br />
We were a bit overwhelmed with the enormity of the Mayo Campus. When we passed the <em>Welcome to Mayo</em> sign, I got teary-eyed. I don't know if it was relief, hope, fear or all three. <br />
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Flowers are everywhere. So is artwork. There is sometimes music. The entire campus is beautiful and there is an atmosphere that is full of hope. It is different than any other medical facility I have entered--almost a sense of being somewhere sacred. Nearly everyone we encountered, from doctors to technicians to nurses to janitors and volunteers, were smiling and helpful. I expect their training in personal relations must be pretty extensive, since people come from around the nation and the world--and often are very ill or very mystified about what is wrong with them. All of the doctors took their time and listened carefully.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXq_wYHR5PyNK3eQpL7t9b2NrH7culAR7q06Fzxmdhbt1j_3RxYZc7rRR5_592-t_VQYnxYF1f1OZ9H3Aawy1OZClLcsPhEXFnqJ4audwPAvGQMHeYJ8C9xTLCWHB3KW6PYGeVwA/s1600/IMG_1311.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="231" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXq_wYHR5PyNK3eQpL7t9b2NrH7culAR7q06Fzxmdhbt1j_3RxYZc7rRR5_592-t_VQYnxYF1f1OZ9H3Aawy1OZClLcsPhEXFnqJ4audwPAvGQMHeYJ8C9xTLCWHB3KW6PYGeVwA/s400/IMG_1311.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ken by the welcome sign. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisS917PYGblR9W8wXCuqORA-L9bPEhkZd0nqBZLR9Mjkqzdn0QiYdtti-fQkj0MU6rxIjqxZqqWlHnKrhuT38I-RyuJcHaxxSoMRH0Vujvjlom_bc7LJrvaZXnudXEX4_uq3zvcw/s1600/mayoplummer-2-bdy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisS917PYGblR9W8wXCuqORA-L9bPEhkZd0nqBZLR9Mjkqzdn0QiYdtti-fQkj0MU6rxIjqxZqqWlHnKrhuT38I-RyuJcHaxxSoMRH0Vujvjlom_bc7LJrvaZXnudXEX4_uq3zvcw/s1600/mayoplummer-2-bdy.jpg" /></a>There were about a dozen building in all. Some are for education, research, and more. There is a building for primary care physicians who serve the Rochester community. The Gonda Building and the Mayo Clinic Building are connected and are where most out-of-town patients are seen. The Mayo Clinic is really many individual "clinics" (at least one or more for each of the various specialties). This tiny picture of the connected two buildings that I found on their website gives you an idea. Each building is larger than most hospitals. The two hospitals, both large as well, are not in the picture. This is just the clinics.<br />
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<br />
Artwork from the great glass-blower genius, Dale Chihuly, lines the ceiling of the main entry to the Gonda Building. I couldn't help looking at it every single time we passed beneath it. The atrium, part of the connecting hallways between the Gonda and Mayo building, is full of music each day at lunch time. The sculpture on the wall is called "Man and Freedom" but it made me think of prayer. </div>
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One day, waiting for Ken to finish up some lab tests, I sat in the atrium for nearly two hours. There is a beautiful grand piano there. A middle-aged Asian man sat down at the piano, smiled, and began to play what seemed like a soundtrack of my life. He played hymns and a few contemporary worship songs, theme music from Disney classics, Broadway tunes, and some classic rock arranged for piano, just for good measure. An elderly lady seated in an chair near me hummed along, and soon I was humming along too. We chatted, and I learned she was from Indiana, and she had been at Mayo for three days. When Ken returned, I thanked the piano player and he nodded and smiled and kept playing. His musicianship was extraordinary, and here he was spending time playing at Mayo. I wondered about what he did for a living. I hope he gets paid, somewhere, for making such beautiful music.<br />
<br />
Another day when we passed through from the Gonda to the Mayo building, someone dressed in surgical scrubs was playing, "There's Just Something About That Name." I hadn't heard that worship chorus it in years, and the beautiful melody washed over me like a sweet breath of Heaven.</div>
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The days were long. After our initial meeting with a an internist, Ken had consult appointments scheduled for mid July. Of course, we (along with most others) came a long way and didn't want to go home and come back later. Getting into each of the clinics for a consultation can be a bit like waiting for a "stand-by" seat on a plane. Doctor visits are longer than the industry standard. They take their time and they are wonderful about answering questions. Since all the individual clinics are in one location, you can often access several specialists in a matter of days instead of weeks or months. The schedulers do their best, but they can't always get patients into each clinic. So Mayo uses a system called "Checkers." Checkers are people who sit in a clinic and wait, hoping that if someone doesn't show up for a scheduled appointment, they will be given that appointment time. Every day, each clinic has many such checkers. We were among them, and we expected answers.</div>
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Some, like a woman from South America, were angry at the wait. Her daughter approached the counter in the neurology clinic and loudly demanded that her mother be seen immediately, asking, "Do you know how much it cost her to get here?" I felt bad for the South American lady, and bad for the staff at the counter, who each day are confronted with a room full of people waiting for appointments and often an equal number of people hoping someone doesn't show up. Most of the checkers seemed tired but philosophic about it. Everyone is glad to be a patient at this amazing place. Puzzles sit on tables. Sometimes we would see someone curled up in a chair, sound asleep.</div>
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The week was boring, fascinating, interesting, hopeful and depressing by turns. It was an emotional and physical roller coaster. For Ken it was often extremely painful. Ken was seen by an internist, two neurologists, a rheumatologist, and an endocrinologist. He had many lab tests and several MRIs. We don't have all the results yet, but those we do have are<em> normal.</em> The rheumatologist disagreed with the one we'd seen in WI who was guessing Ken has Rheumatoid Arthritis. Lab results indicate no inflammation, and steroids had no effect.</div>
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And no, we do not have a diagnosis. What is causing his pain, weakness, weight loss, muscle atrophy, hormone depletion and more? All five doctors who saw Ken know he is very ill, and each one is mystified as to what can be wrong. We are returning mid July for a visit to the orthopedic department, the one requested consult that didn't take place.</div>
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We are trying not to think beyond that. </div>
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Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com3tag:blogger.com,1999:blog-13173725.post-12501088063177057942013-06-17T12:51:00.000-05:002013-07-26T07:30:25.740-05:00Do We Need a "Spiritual Covering?"I am sorry to have been distracted from many things that deeply matter to me--so much so that writing here has slowed to a crawl. I hope to be back soon. Ken is going to Mayo at the end of the month, and we continue to seek answers. <br />
<br />
Meanwhile, I know of a ordained women who had expressed interest in being the senior pastor of a church not far from here. She is qualified and gifted. Apparently the search committee felt so as well, but expressed sadness that since her husband was not a minister he could not be her covering and thus the senior pastor position was closed to her. <br />
<br />
And just last week I read an article about Rev. Jack Hayford, someone I admire. He is a church leader whom many in the Pentecostal/Charimatic part of the Church could emulate. It was a great article, except for when the author (who should know better) referred to the man being honored as "our spiritual covering." He was speaking of how Hayford had long been a trusted mentor and advisor for him and his wife. That is a good thing. Thinking we need a "spiritual covering" is not. <br />
<br />
May I recommend this article by Gay Anderson? It is from "<a href="http://www.godswordtowomen.org/">God's Word to Women"</a> and was written 13 years ago. I would have thought it was no longer an issue. Apparently it still is for many people.<br />
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<strong><span style="color: #20124d;">DO WE NEED A "COVERING?"</span></strong><br />
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</div>
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<span style="color: navy;">It all began
in the Garden of Eden. As we look upon the two fallen ones, gripped by the guilt
of sin, and faced with a broken relationship with the Creator God, we declare:
How great was the fall of man! The consequences of disobedience are in full
view, for we see Adam and Eve attempting to hide and to cover themselves with
fig leaves. They had lost their <b><i>covering! </i></b> Created in His image
after His likeness, spirit people <b><i>covered </i></b>in his glory, filled
with His power, shining in the likeness of His person--holy, but now, they stand
in a <b><i>covering </i></b>produced by their own hands. The candle of man, his
spirit, has been snuffed out. The likeness in which they were created is
tarnished, no longer holy--Ichabod! The glory of the Lord is departed! What
deception to ever imagine they could provide a sufficient <b><i>covering</i></b>
for their sin!</span></div>
<br />
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<span style="color: navy;">We see the
heart of a loving God reaching down, coming to make provision for the highest of
His creation. The Adamic Covenant is the covenant God made with Adam and Eve
after the entrance of sin. Here they lost their relationship with God, corrupted
their character, lost the dominion they had been given, and caused their
children to come under the dominion of sin and death. (I Cor.15:45-49 and Romans
5:12). Their merciful Creator came to reveal His provision and to restore that
which was lost. Often called the "book of beginnings," <b>Genesis is the
beginning of the covenants of a redeeming God.</b></span></div>
<br />
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<span style="color: navy;">What a
forgiving God, coming to provide the way back to Himself! He slays the animal
and makes coats of skin to cover Adam and Eve's nakedness. No man-made covering
could meet the demands of a holy God. Man could never provide an acceptable
<b><i>covering</i></b> for his sin. The blood of an innocent animal was slain,
which introduces a substitutionary death to cover man's sinfulness. This
covenant sacrifice was the first of all blood sacrifices for fallen man and
pointed to the New Covenant sacrifice at Calvary-- the body and blood of the
Lord Jesus Christ.</span></div>
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<span style="color: navy;">Within the
Body of Christ today a doctrine has crept in, teaching that we all need a
"<b><i>covering"</i> </b>in order to minister in our gifts and callings. The
question is continually set before us," Who is your<b><i> covering,</i></b><i>
</i>and under whose authority are you?" Again, "To whom are you accountable?"
Indeed, we all must be accountable, but that is specifically and initially to
the Lord Jesus Christ, who causes us to walk in the light as He is in the light.
Shouldn't our response be that the blood of the Lamb covers us? Men without a
covering are labeled rebels having "Ahab" spirits. Likewise, women are instantly
placed in the "Jezebel Camp" with all the unsubmissive, controlling,
manipulative and usurping ones possessed by a Jezebel spirit. What a sad
estate.</span></div>
<br />
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<span style="color: navy;">In Exodus
26:15, 29 and Exodus 36:20, 34, Moses is told to overlay (cover) <b><span style="font-size: x-small;">(1)</span></b> the boards of shittim wood in the tabernacle with pure
gold. Is that not what Jesus did for us when He grafted us into Him and we
became living stones in the temple of the living God? Wood is a type of
humanity. The gold suggests that God covers (clothes) us with His own nature.
Surely we are made partakers of His divine nature and are clothed, covered in
His righteousness. When a principle is established in Scripture, why must we
succumb to a doctrine of man, which Jesus hated? (Revelation 2:6,15)</span></div>
<br />
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<span style="color: navy;"> When Aaron
and his sons were called by God to the Levitical priesthood, they were commanded
to wear white linen trunks to cover their nakedness. (Exodus 28). Now, we see
the final and last priesthood, which is the Church of Jesus Christ! In
Revelation 19:8, His bride is <b><i>clothed and covered </i></b>in fine
(radiant) linen--dazzling and white, for the fine linen is. . .the righteous
deeds of the saints. Ephesians 2:10 tells us these deeds (works) were prepared
for us (by God Himself) to walk in before the foundation of the world was laid.
Tell me, where did the idea ever come from that we need any <b><i>covering
</i></b>other than the Lord Jesus Christ Who called, <b><i>covered,</i></b>
confirmed, ordained, sanctified and commissioned every believer to be His
representative king and priest on this earth?</span></div>
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<span style="color: navy;">One isolated
passage in I Corinthians 11:5-6, which was and is based on Jewish
law,</span></div>
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<table border="1" cellpadding="4" style="width: 100%px;">
<tbody>
<tr>
<td width="100%"><span style="color: navy; font-family: Times New Roman; font-size: 12pt;">
</span><span style="color: navy; font-family: Script MT Bold; font-size: 12pt;">5. But every
woman who has her head uncovered while praying or prophesying disgraces her
head; for she is one and the same with her whose head is shaved. 6. For id a
woman does not cover her head, let her also have her hair cut off; but if it is
disgraceful for a woman to have her hair cut off or her head shaved, let her
cover her head. 1 Cor. 11:5-6 NAS</span></td></tr>
</tbody></table>
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<span style="color: navy;">will
not suffice for those who have become sons and daughters of the free
woman.(2)<span class="MsoEndnoteReference" style="vertical-align: baseline;"> </span> In Galatians 4: 21, Paul asks: "Tell me, you
who are bent on being under the Law, will you listen to what the Law (really)
says?" Read on and savor what Calvary purchased for every blood-bought child of
God!</span><b><span style="color: navy;"> </span></b><span style="color: navy;">The
Apostle Paul wrote the church in Corinth that he did not come to take dominion
over anyone's faith (II Corinthians 1:24). Many saints have been hindered by
false teachings on <i>covering</i> and have not been permitted to go forth into
the work of the ministry. God forgive and set us on a new path of liberty in His
Spirit.</span></div>
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<span style="color: navy;">God's word to
Moses in Exodus 33:22 reads: "And while My glory passes by I will put you in a
cleft of the rock, and will <b><i>cover</i></b> you with My hand until I have
passed by." The word <b><i>cover</i></b> here signifies: <b><i>to cover over, to
protect, defend, hedge in. </i></b> God <b><i>covered</i></b> the tent or
tabernacle (Ex. 40:34) with a cloud, which was His very Presence. In Psalm
91:4, the Lord's care, protection and love flows out as He promises to
<b><i>cover</i></b> His people with His feathers. Psalm 105:39 tells us He
spread a <b>cloud (His presence) for a <i>covering.</i></b></span></div>
<br />
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<span style="color: navy;">Tracing and
highlighting the words <b><i>cover, covered, covereth, covering </i></b>in the
scripture<b><i>,</i></b> God, the Almighty, reveals Himself as The One Who
covers. Our Lord Jesus Christ is our <b><i>covering,</i></b> and His presence
in, upon and over all believers is sufficient in every respect. The blood
<b><i>covering </i></b>provided for every believer, whether Jew, Greek, slave,
free, male or female, far surpasses the blood of bulls and goats, which only
<b><i>covered</i></b> sin in the Old Testament. But now, the blood of Jesus does
more than <b><i>cover.</i></b> It completely washes all our sin away.</span></div>
<br />
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<span style="color: navy;">Beloved of the
Lord, male or female, we must return to Biblical foundations. </span></div>
<br />
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<span style="color: navy;">Jesus said, "And when one is fully
taught, he will be like his teacher." Who do we want to be like? Do we wish to
be like a person or institution that takes the place of Jesus, or to become like
Christ through the power of the Holy Spirit resident within us?</span></div>
<br />
<div class="MsoNormal">
<span style="color: navy;">Some years ago, I chose to receive the
Lord Jesus Christ as my complete <b><i>COVERING</i></b>. May I share with you
how the Lord brought me under His <b><i>covering?</i></b> For many years I
taught Bible studies in my home and in the church. I'm sorry to say that I
taught a mixture of God's Word and the doctrine of men. A deep desire to please
my husband and those who were supposedly my <b><i>covering</i></b> brought me to
the realization I was walking in a futile attempt to serve two
masters.</span></div>
<br />
<div class="MsoNormal">
<span style="color: navy;">Once I was invited to teach in a church.
When I approached the pastor, who was our <b><i>covering </i></b>in a home Bible
Study group, he saw no problem in my going provided my husband went along to be
my <b><i>covering. </i></b>My husband said he felt no responsibility for that
church and declined to go. Therefore, I told the church I could not come.
Needless to say, the Spirit of God within me was deeply grieved, and I began to
seek the Lord for His wisdom and light. This hunger to know truth began to
expose the error and bondage in which I walked. How lovingly and gently He
showed me Covenant love and that He alone is my
<b><i>covering.</i></b></span></div>
<br />
<div class="MsoNormal">
<span style="color: navy;"> I heard my Lord, my <b><i>covering,
</i></b>ask clearly and distinctly, "Who called you to teach?" My response was,
"Lord, You did." He replied, "Then go teach." That is exactly what I've done
ever since in total liberty and joy! My soul escaped out of the snare of the
fowler. I had to follow up with those to whom I had taught error through the
years and ask their forgiveness. I removed a number of books and articles from
my home and never embraced or taught from them again.</span></div>
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<div class="MsoNormal">
<b><span style="color: navy;"> </span></b><span style="color: navy;">Knowing that He has called and overshadowed us with His mighty
love, that He alone is our <b><i>covering</i></b>, and that He has set us under
His holy name to give account to Him, let us walk in the liberty of the
wonderful <b><i>COVERING</i></b> of His presence devoid of all
flesh.<br />_______________</span></div>
<br />
<div class="MsoNormal">
<span style="color: navy;"><span style="font-size: 10pt;">1. In
Hebrew, more than one word is used for "cover." The word used here is defined in
<u>Strong's Exhaustive Concordance</u> as: <i>fill up hollows, to cover (for
clothing or secrecy), clad self, close, clothe, conceal, cover self, flee to
hide, overwhelm</i>. </span></span></div>
<br />
<div class="MsoNormal">
<span style="color: navy;"><span style="font-size: 10pt;">2. See
Galatians 4:21-31. </span></span></div>
Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com0tag:blogger.com,1999:blog-13173725.post-53242783363732504042013-05-06T22:06:00.003-05:002013-12-22T06:22:55.831-06:00Ken's Ordeal Part 5: Waiting<em>If you wan to start at the beginning, click the link labelled "Ken's Ordeal" at the bottom of this post or in the sidebar, and scroll down.</em><br />
<em></em><br />
There were many good, and likely life-saving results of the discovery and removal of the pheo and one of Ken's adrenal glands. His blood sugars have stabilized. His blood pressure is on the low side. His heart tests are all normal. There are no more "episodes." The surgeon was pleased with Ken's "numbers" when he saw him. He had no explanation for the pain, continued weakness, and so on. He said, "I don't think it was due to the pheo. You not only had fleas, you had fleas and ticks. They just happened to show up at the same time. I hope someone can discover what else is wrong." <br />
<br />
So the attempts to find a diagnosis continued. Some things that have happened are just too personal or painful to share on the Internet. The last three months have become blurry in my mind. There have been so many doctors appointments and so many tests that it is all starting to run together. Some of the things I recall:<br />
<br />
The visit to the original orthopedic surgeon, the one who had suggested the "back cement back in early January. He said, "I'm so sorry, Ken, but in order for it to do any good, that surgery would have had to be done a month ago, and of course, we couldn't do it until the tumor came out. It is too late now." He did not recommend a fusion. He is a remarkable doctor, and has been the most involved and aggressive (in a good way) of all the doctors Ken has seen. He ran multiple tests looking for anything that seemed remotely possible as a cause for all the pain and hand swelling. Nothing showed up. Later bone scans showed osteopenia. Ken has gone from 6:4" tall to 6'1". <br />
<br />
The visit to the endocrinologist. She has been one of Ken's doctors for a long time and was the person who finally connected the dots and ran the test that confirmed that the accidentally-discovered adrenal tumor was indeed a pheochromocytoma. But during a post-op visit, she was unconcerned about Ken's continued weakness and general feeling of illness. She encouraged him to exercise more. She did not have any ideas about what might be causing the continued severe pain. Eventually, some other symptoms occurred which caused Ken to insist that she check his testosterone level. It was "alarmingly low" she said. Two weeks later she ran more test to see if the source of the problem was his testes or his pituitary gland. She ran a scan to check for a pituitary tumor. None was found. She started Ken on a testosterone Rx, and told him he would feel better in about a month or two. He's waiting. It has been about two weeks so far.<br />
<br />
<span dir="auto">The visit to the Emergency Room during Spring Break. This happened after a weekend of severe hand, shoulder and back pain. Ken said his pain was an 8 or 9. (He has never had pain at a 10 level, because he reserves that for "screaming in pain.") After watching him in agony for two days, we went to the hospital. We were hoping he could be admitted for some pain management. He did not get admitted. He did get an intravenous line of Delaudid (thought to be about 6 times stronger than morphine.) That reduced his pain to a tolerable level, but the drug had worn off before we got back home. Thankfully, in another day or so he had returned to his "new normal." That is a pain level of about 4 or 5, after using Oxycontin and a Fentynal patch. </span><br />
<span dir="auto"> </span><br />
The visit to the rheumatologist in Marshfield. The famous Mayo Clinic in MN is not covered by our insurance, but the Marshfield Clinic is. It is large and has a good reputation for diagnosing mysterious ailments. We drove several hours and met with a doctor who came into the room and announced, after a few questions and a few simple maneuvers with Ken's hands, "I know what you have. You have d<span dir="auto">iabetic cheiroarthropathy. It is causing the limited motion and contractures in your hands. There is nothing that can help with this. You also have carpal tunnel syndrome." He gave us a pamphlet to read, and we left, feeling hopeless and defeated. Only later, reading the pamphlet, did we learn that cheiroarthropathy does not cause pain. Nor swelling. Several weeks later he had tests for the carpal tunnel diagnosis. They were, Ken said, "Terrible." And showed nothing.</span><br />
<span dir="auto"></span><br />
<span dir="auto">Our chiropractor does help with the back pain, but the relief is slight and temporary. </span><br />
<span dir="auto"></span><br />
<span dir="auto">A visit to a respected acupuncturist caused even more pain in Ken's hands, arms and back. He could feel "every needle" and reported that two weeks later he could still tell exactly where they had been inserted. They made the pain worse, not better.</span><br />
<span dir="auto"></span><br />
<span dir="auto"><span dir="auto">Of course, we found another rheumatologist, who agreed that the diagnosis could not be polymyalgia rheumatica nor a result of the drug Simvistatin (both suggested by the rheumatologist at St. Lukes). He ran more tests, which were inconclusive. He is assuming, for lack of something more concrete, that Ken has rheumatoid arthritis. He started him on an Rx for that, but says it could be a month to six weeks or more before any results are seen. It has been about three weeks. No improvement so far. And he is leaving the clinic soon.</span></span><br />
<span dir="auto"><span dir="auto"></span></span><br />
<span dir="auto"><span dir="auto">Visits to physical and occupational therapists have been painful and only slightly helpful. </span></span><span dir="auto"><span dir="auto">The next visit is with a pain specialist. </span></span><br />
<span dir="auto"><span dir="auto"></span></span><span dir="auto"><span dir="auto"></span></span><span dir="auto"><span dir="auto"></span></span><br />
<span dir="auto"><span dir="auto">Ken has not been at work since before Christmas. He is on disability insurance for the moment and we are trying to decide what to do. We still think it is too coincidental that the pain symptoms and hand swelling occurred in the same week as the extreme adrenaline episodes. Doctors all say the symptoms are not related to the pheo. We have joked, "Maybe there were fleas and tics <em>and spiders too</em>." </span></span><br />
<span dir="auto"><span dir="auto"></span></span><br />
<span dir="auto"><span dir="auto">And somehow they all showed up in the same week back in December. It doesn't seem possible, does it? </span></span><br />
<span dir="auto"><span dir="auto"></span></span><br />
<span dir="auto"><span dir="auto">We are glad the "episodes" are history and that an accidentally high level of blood thinner led to a check for kidney stones--and showed a tumor. We are grateful that the surgery went well and that those symptoms are all gone. We are glad that Ken's drug list is a fraction of what it used to be.</span></span><br />
<span dir="auto"><span dir="auto"></span></span><br />
<span dir="auto"><span dir="auto">But it was difficult to expect a return to life and function and be met with no answers to the debilitating pain. I wish I had a happy ending. I wanted to wait to write anything until we had at least some positive news about the mysterious hand swelling and the pain in hands and shoulders. </span></span><br />
<span dir="auto"><span dir="auto"></span></span><br />
<span dir="auto"><span dir="auto">Some days are better. Some days are terrible. Today Ken could not lift his arms. He is very depressed. We are praying for answers. We are waiting. </span></span>Dorcas (aka SingingOwl)http://www.blogger.com/profile/15626748280614018533noreply@blogger.com7