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Finding wisdom, music, story, and a prayer for the journey...

Last Build Date: Fri, 02 Mar 2018 17:10:26 +0000


Fri, 23 Dec 2016 18:51:00 +0000

That "Damn Obamacare"

Sat, 01 Oct 2016 19:46:00 +0000

Disclaimer:  This post is not about really about Obama, nor about Clinton versus Trump, and not really about politics. 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.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 has happened.  Back to the title of this post.  There is much I could say about "Obamacare." We rant 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.  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.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.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.  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.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 b[...]

Leaving Home

Sun, 19 Jul 2015 14:32:00 +0000

Later 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. 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.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?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.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.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. 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.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. 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.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.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 morn[...]

Red and Yellow, Black and White?

Fri, 19 Jun 2015 19:12:00 +0000

(image) 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. 

It has been a long time since I preached a sermon. 

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. 

But if I am truthful, I do not have the energy to attempt to be profound. 

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.

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. 

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 flower is the daffodil, but my favorite arrangement 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. 

Don't say you are "color blind" or something similar. We don't need to pretend we don't see racial and/or cultural differences.  But maybe, like mature people can do with food, flowers, music....we can celebrate 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. 

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?

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.   

Might people be a sort of sacred bouquet?

Aletheia Praise Night at the Prison

Thu, 18 Sep 2014 18:25:00 +0000

Last night was the monthly "Aletheia praise night" at prison.Aletheia 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 leadership 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 Spanish speakers.Aletheia Bible Study has continued mostly with volunteers from Reformed churches who have been coming in for years. And I mean many years, 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.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,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 individuals 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. 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 THE GATEHOUSEI 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?"Me: "Yes." I smile. "I'll be okay."MG: Harumph!  No eye contact, just the grunt.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.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.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?"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.  MU continues: "Do you know you are gonna sweat buckets in that sauna? I hope you don't pass out."Me: "I'll just pretend I'm at a spa sauna! I'll probably lose five pounds! It'll be great." SMILEMG: SnortMU: . "If I'm gonna voluntarily sweat it'll be for something important. Nothing important about tonight at that sweatbox of a chapel...."Me: Actually, being at the chapel does me a lot of good. Probably more than a spa.MU: looks at me l[...]

Ken's Ordeal #17: No More Tests to Do

Sun, 31 Aug 2014 21:51:00 +0000

In 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.  We were also told that there are no more diagnostic tests to do.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.  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.  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.I keep thinking of T.S. Elliot's poem "The Hollow Men."  It is a poem I greatly dislike, especially the final lines.This is the way the world endsThis is the way the world endsThis is the way the world endsNot with a bang but a whimper.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."I will always think the pheochromocytoma was due to the toxic water situation at Camp Lejeune.  We will never know, of course.However, many other mysterious symptoms remain.  Two years of tests at many medical facilities, including the Mayo Clinic, have yielded limited answers.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.  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."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.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 lit[...]

The Blue Shard

Wed, 27 Aug 2014 00:47:00 +0000

I walked in the cityOn a sidewalk No one near.Strangely lonely, Empty city.In the gutter,  A glint of sunshine. I stopped, Looked.  Vivid with colorA large shard of glass, Cobalt blue, shot through With streaks of scarlet,Gold, and purple.Just a sharp sliver… Of... something.Thick on one side, Thin on another,Sun bright on its curve.Had this glass,Been a plate? Or a cup?Graceful vase?I stepped into the gutter,Stooped down to touch the surface,Half afraid, Half admiring, Of the arrowed, slivered remnantSomething once complete.Covered with cracks,Some ridged and defined, Some fine as a web,Every part. How came it? Who made it? For what purpose?This once-lovely thing,Now a shard?Slivered, Cracked,In the street.Like me.Carefully, Minding fingers,I picked up the glass andHeld it to the light.A once lovely thing, Made for…something,Its network of cracks caught the light,I thought it sad to leave it,I should put it in a fishbowl, On a window, Or a shelf...or...As I sat on the curb to consider,I placed it back On the pavement, And the shard crumbled to slivers.[...]

Friday Five: The Sound of Muzak (tm)

Fri, 25 Jul 2014 14:41:00 +0000

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: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!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…SOooo let’s talk background music this week for our Friday Five.1. At the office: If you have a choice, do you turn it up, turn it off, or drown it out with headphones?  It depends on what I'm doing.  If I really need to concentrate, sometimes music gets irritating.  In general though, I turn it up.2. At the grocery store or mall: What song (or genre of music) makes you want to hurl? Or throw something?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.3. If you were going to create a “perfect playlist”, who are the artists (or songs/pieces) that you would include?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 is a looooong playlist.4. Have you ever tried using recorded music in worship? If so, what was your plan, and how did it go over?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.5. When is the earliest you’ve heard Christmas music in the grocery store or mall?August.  It was at Kohls.  I was so irritated I refused to shop at Kohls till the Holidays were past.BONUS: “Weird Al Yankovich” has been releasing a stream of his parody music videos lately. Among my favorites: “Because I’m Tacky” :) 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?I LOVE Weird Al.  I think it would be....hmmmm....."An American Tune" from Paul Simon. Here is a clip.[...]

The Story of the Blue Countertops

Sat, 12 Jul 2014 17:17:00 +0000

The story of the blue counters begins with a dream that came at a terrible time in our lives.  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.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.  Ken had spent nine years in the US Marine Corps as a COBOL computer programmer and systems analyst.  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.  The starting salaries he was quoted would compare to six figures today.  Flattered, he nonetheless declined all offers.  He was resigning from the USMC in order to study theology.  As it turned out, we both did, helping each other with coursework, kids, and work.  That was not an easy time, but we had a goal. We were going to minister overseas as missionaries.  Fast-forward several years.  We were co-pastoring our second church, but some time before we had applied to our denominations’ world missions department. Things were moving along in the complicated process, albeit slowly.  We were stunned when we received a letter that turned out to be a polite but strangely unequivocal “No, thanks.”  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. We were living on a very low salary and struggling to make ends meet. We thought about those large salary offers from nationally-known companies, and we cried and we prayed and we struggled to understand.  We never did, and this was deeply painful for a long time. We tried to find out more, but there was, we were told, no negotiating and no further explanation forthcoming.  While we struggled with the unexpected NO, we struggled even more with the seeming injustice of it. Meanwhile, our small rural church had been growing.  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.Then things began to go bad. Very bad.  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.  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.  Things got really ugly.  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.  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.  They must be good people to have a daughter like you.”  That teacher’s comment was well meant but not particularly comforting. I wanted Ken to resign, but he said he could not. We still disagree, all these years later, about what the “right” thing to do would have been. The stress on us was extraordinary and u[...]

Ken's Ordeal Part 16: Neurological Tests

Mon, 07 Jul 2014 17:10:00 +0000

It 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.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.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.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..."  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.I got angry.  I said, "STOP!  Please stop asking questions and just listen to me, and I'll save us some time."  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.)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 get well.  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!"A[...]

Ken's Ordeal Part 15: Knee Surgery

Thu, 17 Apr 2014 14:57:00 +0000

On 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.  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 last summer 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.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.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.  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.  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."  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."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[...]

Ken's Ordeal Part 14 No Cancer, But is this Good News?

Fri, 14 Mar 2014 20:27:00 +0000

It has been two months since I posted.  Where to start?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.  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.  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.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.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."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.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.  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?"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.  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[...]

Remembering Kevin

Sun, 09 Feb 2014 00:31:00 +0000

Last Sunday, January 2nd, Ken's brother, Kevin passed away.  He was 54.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.  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.  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.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.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?"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.  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."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 w[...]

Ken's Ordeal Part 13: Scans and more Scans

Tue, 14 Jan 2014 09:55:00 +0000

Ken 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.    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.This series of posts started with a diagnosis of an adrenal tumor, a pheochromocytoma, which was removed last February.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.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.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.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.    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.Ken relayed this to the insurance company.  They said the form had [...]

Ken's Ordeal Part 12 in Which We Learn of a New Disease, RS3PE

Thu, 19 Dec 2013 13:35:00 +0000

Ken'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.  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."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.Ken arrived.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 a very rare disease, Remitting Seronegative Symmetrical Synovitis with Pitting Edema, or RS3PE for short."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."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.""Yes," said Dr. N.  "Very descriptive of you.  So let me tell you the symptoms of RS3PE."  And he listed them. 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.)Extreme pain in shoulders and hands and often other joints.Pitting edema (swelling) particularly in hands or feet.Fatigue and general illness.Severe weight loss.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."  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."The two doctors glanced at each other, and then Dr. N. added the sentence that made my mouth drop open.  "RS3PE is associated with tumors.  Nobody knows why." 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.)  And the St. Luke's rheumatologist, the doctor who saw Ken's hand and their swollen condition about [...]

Ken's Ordeal Part 11--From the Mayo Clinic to the Veterans' Administration at Milwaukee

Thu, 19 Dec 2013 02:45:00 +0000

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.  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.As I wrote in Part 1, Ken has been increasingly ill for some time.  No one paid much attention.  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.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.  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.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."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.  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 Memori[...]

Time Keeps on Slipping: Unpacking the Pile of Boxes

Sat, 28 Sep 2013 17:05:00 +0000

That 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.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 me 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.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...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.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.  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.  So many memories.  So many decisions to make.  Life has happened while I was making other plans. I tried not to get distracted by contents of the boxes.  Tried hard to just sort into piles. Keep handy--I might need this.  Keep in storage.  Toss in the trash.  Take to the thrift store.    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 [...]

Time Keeps On Slippin' and Transitions Keep Coming

Fri, 27 Sep 2013 19:57:00 +0000

allowfullscreen="" frameborder="0" height="344" src="//" width="459">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.What I did not do much in the 70s was think about aging or changing.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 that was!) and I earned a theology degree.  I hadn't planned that.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.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.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.  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.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!When I need to remember when something occurred, I fir[...]

Ken's Ordeal, Part 10: We Come Full Circle

Fri, 20 Sep 2013 15:44:00 +0000

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.  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.  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. 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.  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."  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.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.Ken decided to forego the surgery until he "couldn't walk anymore."  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 hel[...]

Ken's Ordeal Part 9: An Answer--But Wait

Sun, 15 Sep 2013 01:52:00 +0000

Last 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.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.  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 tiny.  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.    When we first opened the door yesterday, we were quite surprised.  Well, we reasoned, we won't be spending time in here.  We'll be over at Mayo.  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. 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.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.  May it be so, Lord, I said.  That is about as much prayer as I can manage these days.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.  Are we on the 5th floor, the 8th floor, the 15t[...]

Ken's Ordeal: Part 8 -- Changes, and an Offficially Abnormal Test

Tue, 03 Sep 2013 04:17:00 +0000

To start from the beginning, just click on the label "Ken's Ordeal" at the bottom of the post and scroll down.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.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.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."  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.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.  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.  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.Some people think that no longer being employed in the negative environment of a prison would[...]

Ken's Ordeal Part 7: A Mayo Deja Vu

Fri, 26 Jul 2013 12:29:00 +0000

To start from the beginning, just click on the label "Ken's Ordeal" at the bottom of the post and scroll down.One of the Mayo entrances.There is little to say in this installment.  Our second trip to Mayo Clinic was mostly for follow-up visits.    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 some of the deterioration, pain, and swelling in his hands and may require surgery.The front entrance.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.As for his general illness, weakness, low hormone levels, low blood pressure, continued weight loss, etc. there were still no answers.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."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.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.We go back in late August, the earliest appointments we could get.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. 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. [...]

P.S. to the Last Post of Ken's Ordeal: "Camp Lejeune's Toxic Legacy"

Sun, 07 Jul 2013 22:58:00 +0000

(image) I forgot to mention something in the last installment (# 6) that might be significant to someone. 

The day before we left for Minnesota, I was sitting in the waiting room at my doctor's office and picked up an American Legion magazine.

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.

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 highest known levels ever found in the entire nation.

Click Camp Lejeune's Toxic Legacy to see the article for yourself.

Other links of interest are The Few, The Proud, the Forgotten and Camp Lejeune's Marines Put in Cancer's Harmful Way

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 American Legion Magazine 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.

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.

We will always wonder. 

Ken's Ordeal Part 6: The Mayo Clinic

Sat, 06 Jul 2013 22:19:00 +0000

To start at the beginning, click on the link at the bottom of this post, "Ken's Ordeal."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.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.  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.  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.  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.Noah and Lawnmower 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.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.    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.We were a bit[...]

Do We Need a "Spiritual Covering?"

Mon, 17 Jun 2013 17:51:00 +0000

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.  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.  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.  May I recommend this article by Gay Anderson?  It is from "God's Word to Women" and was written 13 years ago.  I would have thought it was no longer an issue.  Apparently it still is for many people.DO WE NEED A "COVERING?" 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 covering! Created in His image after His likeness, spirit people covered in his glory, filled with His power, shining in the likeness of His person--holy, but now, they stand in a covering 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 covering for their sin!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," Genesis is the beginning of the covenants of a redeeming God.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 covering 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.Within the Body of [...]