Qabab

Yes, it really is a word. It is the name of a dish consisting of pieces of seasoned meat. However, it has nothing to do with the Grand Canyon. I’m hoping the alphabet police won’t notice I’m going off theme.

I could only come up with one Q word having something to do with the canyon and that was quartz.  I didn’t even want to try to make quartz an interesting subject, although I’m sure some would be able to do that. So instead I chose qabab, which interestingly, is kind of like the Grand Canyon word Kaibab – that’s my excuse. There’s not a lot to tell about qabab either, except that it is more commonly spelled kebab. Shish kebab. We all know what that is and have probably enjoyed those seasoned pieces of meat roasted on skewers with vegetables stuck between them.

What I would really enjoy writing this post about is this A to Z exercise of researching my coming adventure.  It has been so helpful to me, as I learn ahead of time about the things I will be seeing and experiencing.

In some ways, it has dispelled the fear of the new and unknown. I have looked at the details of the trails I’ll be walking. The history of the buildings, the inhabitants of the area, the development and tourism aspects, the geography – all of it is a bit familiar now.  I’ve thought through all the travel arrangements and rehearsed mentally what each day will be like. Some of it may turn out differently, but I at least know one way it could turn out.

The only unusual and unexpected result from my posts has been comments from friends and relatives who are now worried about me going on this hike.  I am having to explain why I would want to do such a thing. The husband looks at me and says “you’re not 25 anymore, you know”.  It’s like people are thinking I’m going to run my wheelchair off the edge of the trail.  I’m not going to start having second thoughts about this – that’s my story and I’m stickin’ to it.

And as long as my Q word is unrelated to the Grand Canyon hike, I thought I’d post a couple pics also unrelated to the Grand Canyon. They are from my first extended hike on the AT with four lovely young women. Now that was an adventure. The first one was taken by the gentleman who gave us a ride to our starting point (we hiked back the 30 plus miles to our car). Our packs were so heavy, and we were so “green”. I’m sure he thought we would never make it. But we did.

Julie, Maura, me Esther, Kim
Me in my dork costume.

The countdown has started, 24 days to go… I CAN’T WAIT. Well, I can, but you know what I mean. Just sayin’…

Happy January 14th

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I have an orange envelope with pics of me and the husband, including these that are seen very seldom. Hmm… even then I was driving.

Anniversary Eve (January 13th)

Tomorrow afternoon, we will have been married 46 years.  This has been an eventful year, with retirement for the husband, an interstate move and our house going up for sale, and then a diagnosis of Lewy Body Dementia that the husband was not expecting.

We may have many more anniversaries. But however many there are, we have this one to look forward to. We have an appointment with a lawyer in a nearby city, to discuss estate planning. As long as we are there, it will be nice to stay in a hotel and not to have to make the two-hour drive home.  As long as we are staying for the night, we are going to dinner at a nice steakhouse as a celebration. It is all planned and will be more of a “night away” than we have had for a long time.  It’s just hasn’t been something that we find ourselves doing.

It will be a celebration of another sort as well. Today we got the first real paper offer on our home in Florida.  It’s been over six months on the market and this is the first offer we have had, although there have been lookers. It is the kind of family we had been hoping for, and although we feel we must make a counteroffer, we are hoping to come to an agreement with them. In a little over a month we could possibly be closing the sale. I have been looking forward to this for so long! (at least it seems like a long time).  It would solve several other problems as well if this could come to closing. Prayers appreciated.

The husband has not been feeling well, but he is pretty certain he will feel better tomorrow. Don’t ask me how he knows.  It’s as much a spiritual/emotional matter as it is physical, although it involves physical discipline to keep to the diet that he wants to be on.  I am hoping the restaurant will have at least one good keto meal to choose from so he can enjoy the evening.  I chose a hotel that has no stairs to climb and a nice hot tub to soak in. That should also be a treat, if he has the energy for it.

Things do fall in place at some point. I am glad it is now, or at least seems to be now. I know we could yet be disappointed, but I’m taking care not to find out until after our anniversary. Congratulations to us. We are in it for the long haul.

 

 

 

 

My Uncomfortable Life (and how God uses it)

I love to play the piano.

I am not a virtuoso, but I have played enough over the years, that I can relax and enjoy expressing myself through music.  I’ve played hymns in churches most of my life, and always offer to do so when I move to someplace new.

And so it happened that I offered to play for the church that I am attending here, “up north”. and am collecting quite a collection of piano stories with a common theme. Embarrassment.  It’s got me thinking.  But, as always, what I let myself think is important. Humility and embarrassment are related, but not quite the same and that is where the importance starts.

This morning I arrived early enough for church that I could make sure the electronic instrument, a clavinova, was plugged in, turned on and sounded appropriate for the small early service. I only had to play for the communion portion of the service – one hymn.  All was set.  The service went well, the message was moving and the invitation was given for communion. To my surprise, when I started to play there was a pop drum beat and a very weird bass thing going on with my reverent, calm hymn.

I hunted for any button on the control board that had STOP written on it, and tried several times to make the hymn sound like a hymn, but no. What finally came out of the machine was barely recognizable and was probably more distracting than having no music at all.  Stuff like this is a musician’s nightmare.

This particular service is early, 8 am, and has small attendance, so the music crew does not do a lot of practice for it.  Other times when I’ve participated, I have played the wrong song at the right time, played the right song at the wrong time, and played when I was not supposed to play at all.  I suppose the regular attendees are getting kind of used to me and my uncomfortable adventures.

I am filled with mixed emotions. Why do these things keep happening? It always takes a bit of courage to put myself in a place of service to others where what I do is noticeable if I do it poorly. I am aware that music sets the mood and can influence people. I desperately (yes, desperately!) want to not distract people from their worship, or make them uncomfortable because they are worried about me.

On the other hand, I realize that music is not what it’s all about.  Worship is not about me at all and how I respond when things go poorly is what God is probably watching. What does my embarrassment lead to? What discouraging messages am I giving myself about my performance, my usefulness? Will I be intimidated and unwilling to serve again? Those would not be good choices. However, I have to consider that God might be telling me that my time playing for church is finished.  Maybe I am to move on to something else, and it would be okay.  It has to be okay. Kind of makes me look at my pride issues and wonder what God wants to teach me next.  That is always a good thing.

This morning, the pastor asked me what I was going to write about next.  I had no idea then, but God inspires in strange ways and look what happens. Just sayin’…

 

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Bottom line – I can always make music in my heart, and maybe that’s the best place for it…

A Different Kind of Whitewater

S N O W

So Now Over Winter (just kidding, I love it…)

We got more snow last night.

I was awake at 3:30 am listening to the plow over in the Walmart parking lot. There are fences and tree borders between our condo and Wally World so we don’t see it, but we do hear most everything. That’s how I knew there was more snow.

I didn’t actually get up until 5 and since it was still super dark, and I think it’s a little ridiculous to shovel snow in the super dark, I waited another hour to go out. It was simple dark then, and my brother was out with his Bobcat, clearing the parking area for his employees to arrive.

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In case you are wondering, this is simple dark, and my footprints.

It was a whole different kind of shoveling today. The shovel no longer slid easily over the cement. I had to kick it every few inches because there was an immovable layer in there somewhere. If you’ve ever had a pan with food burned on it, that’s what it was like. It was also quite slippery – made it hazardous to get in a good kick when the leg I was standing on was slipping out from under me.

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This is all I do – walkways and a few feet in front of garage doors. My brother takes over from here, with the machine.

Frequent rest periods were the answer. Every time I would stop and look around I was amazed all over again at how beautiful the world is when covered with snow. And to be out in it is an experience so different from looking at it.

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Look how pretty.

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Outlined in white…

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Lights and darks,

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Snow…

My snowman looked a little stressed this morning, just sayin’…

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I didn’t make him bending over like that. He did it himself.

 

Do Something Fun

Why not? Fun can be found anywhere if you are able to search for it. Yesterday’s excursion was to see a little of the history in the Rochester MN area, and to have a good meal for the day.

It is a challenge to eat well when traveling. Schedules are erratic, fast food is everywhere and may be the only thing we have time for, so we looked at the restaurant recommendations in the motel guide. The Hubbell House in Mantorville looked interesting and fun.

Mantorville is a small, historic town about 20 miles from Rochester. The Hubbell House was the first establishment in the town, way back in 1854.

On the one main intersection, the other three corners held down by a coffee house, an ice cream shoppe and a saloon.

The lobby much as it was when the stagecoach line was the main reason for the establishment.

We were there early, but others were already arriving. The various dining areas can hold over 300 people. We had an efficient, grandmotherly server with the authentic Minnesota accent, and a good knowledge of local history. She assured us that Garrison Keiler had never been there, although they do have record of many other famous guests.

Placemats showed signatures of all those famous guests.

Our meal was good, as was the service. We shared beef tips with wild rice. We took bread pudding with raisins and caramel sauce home with us for dessert. A quiet, reserved atmosphere, surrounded by antique decor, real oil lamps glowing on each table, white cloth napkins, all made the experience special. The familiar, but varied menu choices made it comfortable. The historic details made it interesting.

This country is full of small, interesting places to visit and experience. I’m glad we found this one.

Quarry Hill

The husband and I are back at the clinic in Rochester, following up on a couple of medical recommendations. We get to stay in a motel and eat at restaurants every day so I’ve decided to call it a vacation. I’m much more familiar with parking, the traffic patterns, and the locations of our appointments, so everything is going well.

We have had opportunity to look around the city during our wait time. It’s been over 40 years since I went to nursing school here – long enough that most of the buildings I remember have been torn down and replaced.

One memory I had was of a strangely shaped hill where students would go to have picnics and hang out, relax… I looked at a list of parks and found Quarry Hill Nature Center. It sounded familiar and as we drove there, I remembered more and more.

It was a good place to wait, to see and learn about local wildlife. There are a lot of trails for walking, but since the husband is not a hiker anymore, we watched birds in a feeding area.

Quarry Hill was made into a park a couple years after I left school and I was glad to find it again. I wish I had kept in contact with my friends in nursing school because I’d love to have help remembering some of these places, places I never thought I would forget.

Retirement 101

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 I am not a financial expert. The whole subject of taxation confuses/bores me but I realize it is a necessary evil to know something about it. I write about it mainly to remember what has happened, but perhaps someone else can be spared some pain by reading of our experience.

If you are blessed with work during your life and have been able to put any of it into savings, there will come a time called retirement (age 72) when the government says you have to start using this money. You must take out a certain percentage of your savings every year, called an RMD or required minimum distribution. If you don’t get the hang of it the very first year, you are given a little mercy – if you apply for it. It’s almost a “given” and happens to people all the time. It happened to us. I think I’ve written about it already.

2016 was a year for mistakes. We missed the RMD by four days for one, and we also made a mistake in figuring what we owed. As a result the IRS punished us with a penalty –  50% of what our RMD would have been. When we discovered what had happened, we hired a CPA to submit an amended return for 2016. He also discovered our mistake which resulted in us being owed a return for that year. No one was alarmed at this point. It was expected that we would be forgiven the penalty for the RMD.

We started getting letters telling us to pay our penalty. They were counting the days we were “overdue” and charging interest on the debt. Twice over a period of several months our CPA called the IRS hotline, explained the situation and was told that since the amended return had been filed they would eventually get to it. We could ignore the letters. They said they put a hold on any further action and wouldn’t be bothering us about the matter.

But the letters didn’t stop, and the amount they said we owed kept climbing. Finally one day we got a notice that since we hadn’t paid, the IRS was going to start taking it out of our social security checks. Yes, they can do that. Once again, our CPA spent a couple of hours on the phone trying to find out why this was happening. The IRS couldn’t locate our amended return. One office had sent it to another and in between, it disappeared. It was resubmitted immediately and once again we were assured that any action against us would be put on hold. Nevertheless, money was taken out of the husband’s SSI check that month.

Our CPA had decided to get an extension for our 2017 taxes. He reasoned that we should get 2016 out of the way first, especially since the IRS didn’t seem to be getting the message that we didn’t owe them anything. We were due a return for 2017 and he was afraid they would take it. By this time, he had gotten a tax advocate for us – a person who almost walks your return from office to office until it is resolved and no longer a problem. His extensive conversation with the IRS gave him assurance that it would be okay to file for 2017. There would be no action to take the return we were owed.

Today we got a letter saying they took our 2017 return and applied it to our “debt”. It’s beginning to seem like the only sure thing is that they WILL DO everything they say they WON’T DO.  I feel like my favorite government agency has me on a hit list. In their defense, I have heard that they have had severe budget cuts and have way too few employees. But how is this ever to be solved? We pay a lot of tax – it’s not like we are paying less than we owe.

I’m just saying, if this ever gets straightened out, I’m throwing a party. #frustratedtaxpayer

Mayo Clinic: A Diagnosis

20180915_2000445957117869457069032.jpgWe’re thinking it over.

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this Lewy Body Dementia . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. It is progressive. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know.  At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all.  I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him.  I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea).  We’ll see how that works out.  It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that.  The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm.

That’s it for tonight.

Day 4 at Mayo Clinic

Day 4 at Mayo Clinic had its up and downs, but was also the day that was the most accomplished so far.

 The day started early – third day in a row that we were up, fed, and on the bus shortly after 7. Soon after arriving Dennis was met by the professional doing his testing and disappeared for a couple hours. He came out for a quick snack and then went back for another two hours. I thought for sure he would be exhausted by then. I was called back for a brief discussion with him and one of the testing doctors and then we rode the bus back to the motel.

 While the husband was getting tested this morning I made a trip to the business office to check on the infamous pre-authorization request for the PET scan (still pending) and then wandered around looking at all the stunning artwork and views of and from the various buildings. So much marble and granite, so many windows, visitors sitting down at the grand piano in the lobby and playing a tune, people of all ages and cultures walking past, and always a new tunnel in the subway and a decision to make to walk it or not – I could have spent hours. (Some photos at end of post.)

 To give Dennis time for a nap, we decided to take the car to the next test instead of riding the bus. The PET scan was scheduled for 4:50 and Dennis would be fasting until it was over. We knew he would need to eat soon after so Mom came along with us and we planned to go right to a restaurant afterwards.

 Every time I checked on the request for authorization, the answer was the same. T 4:30 it was still pending and no one could figure out the persistent problem or get satisfactory answers. It was the most expensive test but the most important, so we paid for it to make sure he was able to take it. Insurance will get billed but we have no clue whether or not they will pay anything on it. Oh well.

 Mom and I read our books and waited while the husband had his head scanned. The books we’re working on are both very riveting and we wouldn’t have minded waiting a little longer. As it was, the test was over quickly and we were off to have supper at “The Porch”, a converted railroad station family style restaurant.

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Mom wanted the “Bomb ass gravy”. I kind of favored the “cold mac and crack”. If nothing else they had cool names.

 

 Tomorrow will wind up the Mayo experience for this time. One test remains, the lumbar tap. I don’t know if I’m excited about this one or not. It’s the most invasive and has a bit more risk to it but is also one that the husband thinks could make a difference in some of his symptoms. It’s at 9 am. All that remains after that is the meeting with our primary specialist Dr. Jones at 3 pm. They expect he will have results from everything to discuss with us. I am so used to waiting a long time to get told of results so I will be surprised if it happens. We will drive home immediately after that.

 Something we all think about as we watch the crowds of people at the clinic, on the bus, in the waiting rooms – they are all living out their private battles with illnesses that have happened upon them and changed their lives. Things are not normal anymore for them. They all have stories. They all wonder what their future will hold. Just sayin’, we are not alone by any means.

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Sight that greets us each morning as we enter the Gonda Building.

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Marble everywhere, even on the walls as art.

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Glass sculptures hang over stairway to subway level.

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Atrium ceiling gives views of the older Mayo Hospital buildings.

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Wheelchairs ready in the entryway (like carts at the grocery), for anyone who needs to use one.

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Wall of glass in main lobby of Gonda Building.

Mayo Clinic Day 3

Please tear my hair out in clumps and put me in a straight jacket. I’ve been talking to my insurance company. For the purpose of this post, the numerous automated screenings and niceties have been left out of the conversations which took about an hour altogether. 

Me: Yes, hello. I’m calling to check on an authorization for a PET scan for my husband Dennis. Where do we stand on this request?

Insurance company: I can check on that for you, just a moment… I don’t see a request for a PET scan in the notes. I see four other authorizations, blah, blah, blah…

Me: Mayo Clinic sent our Dr.’s notes to you yesterday, and they were told the decision was pending. It’s an out of network issue and it’s complicated. Do you have someone who handles these cases that I can talk to? (I give them a case number and the history of the last five days phone calls.)

Insurance company: No, I can’t say that we do and the notes we have don’t mention a PET scan at all.  (She tries to find more information but comes back with the same answer.)

Me: (Calling Mayo Clinic business desk in a panic.) I’ve just called my insurance to check on the authorization, as you suggested, and they don’t know anything about a request for a PET scan. It’s supposed to happen tomorrow. What can I do?

Clinic rep: We called your insurance at 8 am this morning to see if the authorization was given. They did get our fax yesterday about the Dr.’s evaluation and the matter is still pending. We should know something today.

Me: Why are they not able to find this anywhere in his record? They have the other authorizations but nothing for the PET scan. They say they don’t even have case numbers like the one I was told to give them.

Clinic rep: (explains all kinds of stuff about a special review board for out of network authorizations) We gave them the Dr.’s recommendations and I’m sure they will be getting back to us. Don’t worry, we have all day today and most of tomorrow to work this out. It will get resolved.

So I called the insurance company again, got a different rep who said basically the same thing with the added information that she had never heard of a special review board and she would know if there was one (she said). I made sure she knew that this was getting very mysterious and confusing to get two completely conflicting stories about the status of the request. She assured me they did not have a request recorded – but I could get one started. She told me how.

I didn’t want to call the clinic again, but I did. No surprises there – the same report. At least everyone is consistent. I guessed it was up to me. Which story did I want to believe? So, I went with the clinic, and am praying that they were right.  I really did not want to make any more calls. Tomorrow, we will find out if that was a good decision.

A bright spot in the day came when the scheduler called mid-morning and told us we had an appointment  tomorrow, at 7 am, for the neuro-psych evaluation, the one we had been on standby for. We no longer had to keep showing up and waiting for a cancellation. The lumbar puncture was rescheduled for Friday morning and will be followed by an afternoon wrap up with Dr. Jones. We are going home on Friday!

But will probably be coming back in a month or so (sad emoji face). Whatever. Maybe by then we will have new insurance, the kind that’s not so special that no one knows about it. Just sayin’…

Many thanks to my Aunt Evelyn Boone for a calming, pleasant afternoon visit and a wonderful dinner at her residence. Best thing all day!