FMF: A Marvelous Thing

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This is my Five Minute Friday submission. I’m sorry, I don’t write very fast. I rather like to think about what I’m writing and that takes time. The prompt was SHARE.

When I was a child, to share meant letting others eat some of your cookies, or use your toys. You didn’t have to give them away, but you did have to peacefully watch while someone else enjoyed them. I guess that’s still what it means to me but it has become more of a “show and tell” experience for me. It is now about sharing moments of joy, or sorrow. It is about sharing experiences, doing things with others. It is about sharing moments of importance, in the hope that someone else will enjoy them along with me.

For instance, I came across a red maple tree today. It has been vividly green all summer. Now it is suddenly and perfectly red. This is a marvelous thing. The science is behind it all, I know. But even without the science, it is just a marvelous thing to look at and enjoy. I share it with you.

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Birkie Trail, Next 6 miles

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This is the second weekend that we have put on our hiking shoes and taken to the trail. After a week’s work, we really enjoy a good long walk in the woods. We skipped a shorter section in favor of a longer hike than last week. We will go back and pick it up someday when we have less time.

The trees were still more green than colored. There were only a few brilliant ones, but that didn’t keep it from feeling like autumn.

I was a little obsessed with the fungi, but you’ll see why. Strange stuff.

Enough talk. I just want you to see what I saw.

Makwa Trail, here we come.
First spot of color.
The trail skirts this lake except for here, where it gets a little crazy. This is a single track bike trail.

Moss abounds. Lovely, right?
Time for some fungi.
More fungi.
And more…

And this one!

This little guy, about head high on the trunk of a tree, amazing!
Can you spot the camouflaged picnic table?
One more.
No, one more.
Some trail worker forgot their saw.
I spent a lot of time looking at the path because it was always so lovely.
About mile 6 we left the single track trail and did a mile on the larger ski trail. We (the girls) were getting tired and the ski trail was straighter and smoother.



Celebrating Today

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Although I am not with her, today I am celebrating the birthday of my daughter, Julia. As I scrolled through multiple pictures of her it was easy for me to recognize why I love her and am blessed to share life with her.

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First off, you cannot put this girl in a box. Oh, wait, maybe…

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Of course, I am her mom and have a fair amount of bias. There are a lot of “mom pics” in the album I’ve made. But most of the photos are of Julie with the family at large, with her Cambodian “sisters and brothers”, with her clients and their animals, with her own menagerie of four legged friends, Julie being silly, enjoying the outdoors, Julie being Julie. The smile is always present and gives the impression of coming on easily and quickly. She is connected. She is involved.

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I’ve seen her when she isn’t at her most glorious, when her dishes aren’t washed, when she doesn’t feel well, when she’s depressed, when she’s overwhelmed with her complex life, having a bad hair day, in trouble at work… all those things that happen to us all. I still like her. I always love her. I admire her resiliency and her ability to work through to better times. If I were a captain choosing my team, I would pick her.

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So today, thank you for keeping yourself in my life Julie. I am grateful for your friendship and all the wonderful opportunities you give me to talk, to laugh, to work, TO HAVE FUN! I am forever on your side and you are forever in my prayers.

Love, Mom

Wonderful Day

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Every now and then, when I really need a wonderful day, one comes along. Of course, all days, even the worst of them, have something wonderful about them if you have enough energy to look for it. But this day, it was full of back to back niceness, the likes of which I have not seen in a while.

We went to the smallest and earliest of the three church services at Hayward Wesleyan, where we have started to feel at home. It was satisfying, encouraging, and did not make the husband cry (well, maybe a little, but he held it together…). The weather got beautiful so we went for a walk afterward, just the two of us. He felt good today, noticeably good.

Breakfast with the relatives after church. It’s a ritual. We go to Flat Creek Eatery for the fellowship more than the food and it’s always good to spend time with my aunts and uncles and Mom. Smiths, Boones, and lots of coffee.

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We are working on the Hayward Cluster now, soon to go on to Seeley, then Cable.

My brother, who is also a Dennis, his wife and I had planned a hike for the afternoon. By 2:30 we were out in the woods and it was perfectly gorgeous. We have a goal of hiking the complete distance from Hayward to the end of the Birkiebeiner trail near Cable, in sections. This was probably the shortest section, 5.7 miles on my counter, Hatchery Creek Trail to Mosquito Brook. I LOVE BEING IN THE WOODS. Enough said.

This is an  “intermediate difficulty” single track trail. The real difficulty is jumping out of the way when a fat tire bike suddenly appears, going fast!
This was midway. The signs are pointing to them, but those are not their names. 

 

Fungus fans, what do you call these gorgeous things? 
For some hard to figure reason, someone thought this lovely table should be chained and weighted. 
These are wintergreen berries, common on the forest floor “up north”. Tasty.
A “grandfather” of the forest in the piney section of the walk.
Several sturdy shelters have been built along the trails – used mostly as a warming house for winter skiers. 
Mosquito (“Skeeter”) Brook, running high through the forest.

The husband had time for a good rest while we were gone. We got back just in time for a cup of soup before heading off to the next fun thing. Choir.

I didn’t realize how much I have missed music – good, cooperatively produced music. Our community has formed a volunteer choir which has performed a Christmas cantata of some sort for the last 20+ years. This year the director is a … hmm, dynamic might be the word, young woman who is filled with the spirit of worship and loves to do this job. The two hours went so fast! I was impressed and I know I am going to love this time each week. The husband is going to love it too. I can tell. And it will be a great way for us to get to know some people in our new location.

Four fun things in one day has me worried that I may have used up my quota for the week. I’m kidding. There are enough good things “up north” to fill the whole week, I’m sure. And I will be looking for them.

The husband is trying very hard to stick to his keto diet, lose weight and figure out how to regard this Lewy Body Dementia thing. When he is feeling positive, the world seems a bit brighter and lighter in its weightiness. Today he walked and talked much like his old self. We are wanting lots more of this kind of day. Just sayin’, who wouldn’t?

Where Peace Speaks

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Where I walk.

Where I pray.

Where I open my eyes wide to see hope.

Where I listen and hear “be calm”.

I can cry, but not for long.

I have to look at the clouds,

then I have to look at the beaver’s progress,

Then at the milkweed going to seed.

Holy distraction.

A blessing.

Mid September “Up North”

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This is a September sky in Wisconsin.

September is more than half over, wow.

As often happens when a large, mind-consuming task is done, I’m left wondering what to do next. All the things that I haven’t thought about while concentrating on our trip to Mayo Clinic, are probably still there needing to be attended to, but I’m not sure I’m remembering them all.  That is my most frequent prayer, that I would be reminded to do things at the right time – that nothing would fall through the cracks.  Things that do fall through the cracks unnoticed create bigger problems later.

We are becoming a little more devoted to our keto eating plan now that the husband is motivated to protect his brain cells, keep those mitochondria healthy, and all.  It is a good diet for neuro-degenerative conditions, as well as cancer, diabetes and heart issues. Since I wrote about his condition of Lewy Body Dementia I have received lots of suggestions of things to try and things to avoid. We already know about some of them but will probably try them all eventually – none are ridiculous, or lacking in a good success story.

Which brings me to the point of how different this disease can be from one person to the next. Each individual kind of paves their own way down this path. There are some common traits, but even those come and go.  While it is interesting and hope producing to read stories of cures and great improvements, it can be equally devastating to read about unsuccessful outcomes. I would rather think that the husband’s story is his own and it’s not been told yet. Let’s just live well and watch what unfolds.

We can do this.

Thank you to all our friends who have responded lovingly, given us encouraging words, and have let us know that you are praying for us. A health threat is a bad reason to be drawing attention, but because of it we are newly aware of people out there who care.  I think that we could relieve your fears for us if you could be around Dennis for a while. I think you would be reassured that he is still himself, and thinking well. Circumstances are troubling, but God pays no attention to circumstances since they do no control him in any way.  It only makes sense to us to trust God and try to think like he does.

Tomorrow we are making a fun trip to the nearest “big city” of Duluth, MN. We are seeing some friends and then going to my favorite department store, Sam’s Club (lame, but true). We are looking forward to it. This weekend is Fall Fest in Hayward. It’s also the start of the Feast of Tabernacles. We intend to enjoy both. Life is good. We are not downcast. But don’t any of you stop praying, okay? Just sayin’…

P.S. The husband, a.k.a. “the fan man”, got a work related call today.  His brain is in high gear when it comes to ventilation and fans. He was proud that his company still refers the “sticky” problems to  him – and he deals with them.

Mayo Clinic: A Diagnosis

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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

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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

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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!

Mayo Clinic Day 2

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Geese on the run at Silver Lake. Ok, they’re not all running.

It’s Day 2 and I”m beginning to know my way around, where the different buildings are, where to pick up the shuttle, where to go to eat. The husband is getting better at it too, but he doesn’t go anywhere alone and likes to have someone to follow.

Our appointments were not scheduled the way we would have wished but we were told it was possible to change some of them. The schedulers told us “Be a checker!” and wrote it on our instruction sheet. I had to ask what that meant. It’s their suggestion that you be on hand for the test you want to get, in case someone cancels. It’s like “standby” at the airport. We were on hand at 7am and 12 pm, the designated times, with no success.  But again, the people working here are all helpful and so good at what they do. It wasn’t a bad day.

After our morning wait, we went down to the business office and asked about our insurance authorization for the needed PET scan. It was not a busy place and a very competent person helped us right away. She made some calls and told me that Dr. Jones’s report had been sent to the insurance company. I will call tomorrow morning and see if it has had any effect. And again, no lines, prompt service, and people asking us what we needed before we had to ask them. Can this place be real?

Going back and forth as many times as we did gave us some good experience riding the shuttle. It is easier and cheaper than driving and will be our main mode of transportation.

We are finding ourselves very easy to entertain. Today we shopped at Walmart, took naps, read, watched TV and ate our snacks in the room. We’re doing one meal a day at a restaurant. Tonight’s choice was Outback.

I am trying to resurrect memories of my year in Rochester while in nursing school. It was so long ago that I’m afraid my dorm attached to Methodist Hospital, Clara Madsen Hall, has been torn down and replaced by some larger, imposing building. I couldn’t find it. Almost everything downtown around the Clinic itself looks unfamiliar to me, although the main street, Broadway, still had many older buildings. There are also some one way streets that I don’t remember being there (but that I will never forget again…).

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Ducks and geese abound. Watch where you step.

After dinner we drove around a bit and I was relieved to find one place was much the same. Silver Lake park was still there. The lake itself was part of the Zumbro River and there was a power plant connected in some way with it. Because the water was warmed by the power plant it didn’t ice over as quickly as other bodies of water in the area. It was home to great multitudes of Canadian geese all year round and quite a sight to see. I remember times when it was cold enough to warrant goose rescue attempts for those animals that were getting frozen into the ice. The geese are still there, along with a sign asking people not to feed them. A large goose produces 3 lbs. of poop per day (who knew?) and all that creates a significant bacteria problem for the lake.

Tomorrow we will be on standby for the neuro-psych evaluation again, and hopefully will get time to visit my Aunt Evelyn in the afternoon. The husband (and Mom and I) are worried about Julia. Hurricane Florence is heading toward North Carolina and Greensboro is in the center of the all important cone of possibility. We know what hurricanes are like… This world is full of things we can’t control. How plain that is. Just sayin’…