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 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’…

Who Will I Be Next?

There’s nothing like moving to help you think about who you are, who you really are.

For years as a young mother, living in a rural area, I was responsible for growing a lot of our food and preserving it for use during our snowy, winter climate. I learned a lot about gardening, had my own rototiller, and a root cellar. I was baking bread with flour which I ground with my wheat grinder. I was making sauerkraut in stoneware crocks and canning tomatoes, green beans, beets, applesauce – lots of fruits and vegetables. I had a raspberry patch and made jam. I enjoyed that lifestyle so much. I loved being that person, even though it entailed a good bit of work. It was about 8 years of my life, thirty years ago.

Since then I have occasionally tried to garden but it felt more like raising produce for insects (or whoever it was who ate it before I got there to harvest). One year I canned tomatoes because the farms here in Florida were practically giving them away – they didn’t have workers to pick them. My Wisconsin persona brought jars, equipment, a pressure canner and expectations to my new home and they have been largely unused since then. I have kept them on a shelf in the garage. I have avoided making decisions that needed to be made.

Who am I now? Even more important, who am I likely to be in the future? It’s not that I don’t still like the thought of gardening, or of having good food put up for the winter. It’s that moving has made me decide not to be a person defined by “my stuff”. It felt empowering to put the jars in the recycling bin, knowing that they could be replaced pretty easily up north, if needed. The person I am is one who adapts to the reasonable default, whatever that is going to be.

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All those perfectly good, jars and lids – somehow doesn’t seem right…

Another similar moment (I know, two in one day!!) came in the course of taking the husband to work. He has been dreading closing up his office, making decisions about his boxes of books and papers. He has spoken of it several times so I offered to help him. We took a small table and I arranged all his books where his coworkers could look them over and help themselves. I went through his periodicals and we decided to pitch all but the last year’s magazines.

It’s probably harder for someone who has had a long career doing what they were educated to do. They really become defined by their job. I think the husband’s books, his physics notes from college (yellowed, with bugs, and copious dust), his work memos from eons ago, and bits and pieces of ventilation equipment were defining him to a great extent. He left the room and I took care of some of it for him (dumpster) but I’m not saying exactly what because he reads this too.  If he can actually remember something he needs from it all I will go dumpster diving and look for it. I’m betting there will not be a need.

Now we are freer than we were, but not as free as we will finally be in a couple weeks. We will be free to adapt and be who we really are in our new circumstances. For me, the job will be easier without the canning jars along for the ride, just sayin’…

What We’re Doing this Summer…

What’s Happening with Us…

What on earth have we been doing? We’ve been selling and moving for months already! Aren’t we gone yet? No, we aren’t. Here’s what’s been happening in the past few weeks of relative silence:

  • The husband has been finishing up his last weeks at American Aldes Ventilation. They finally realize he is leaving and are asking him questions and scrambling to learn the things he will not be doing for them anymore
  • About half of our “things” got boxed and put in a container that is stored someplace in Tampa.
  • Packing has continued as I empty out closets, dressers, cupboards and the garage.
  • Keeping the house “showing” ready in case an interested buyer comes our way. We’ve had two open houses, both of which had 0 visitors. Really. Everyone is up north I guess.
  • We have been using up our food supply, giving some things away, sold the freezer. (Now we’ll hopefully leave before we get a hurricane so we don’t have to restock.)
  • Sold my car, and traded our red truck for a newer Chevy Colorado in a sophisticated grey.
  • Ordered a topper to go with the new-to-us truck to give us space for the move. They take weeks to make and getting it put on will probably be the last thing before we leave.
  • Spending lots of time driving around together, since I love to drive the new truck and am not letting the husband get behind the wheel.
  • Doing our last visits to doctors and dentists, compiling our health records to take north with us.
  • Keeping up with summer growth in the yard, mowing, pulling weeds and vines, trimming trees.
  • Visiting with friends we may not see again for quite a while.
  • Last but not least, trying to keep healthy and find our way out of some disturbing health problems.

 

What we hope to be doing in the next few weeks:

Dennis Retirement  (Click here to see the invitation with a nice picture of the husband. I’m technically challenged to get it to show up, sorry.)

  • Retirement party!!! I am so excited to see the husband getting honored by his co-workers. He has been faithfully on the job for 35 years and has been through a lot with this company. They have been planning a special lunch out at a restaurant and a surprise. I have no idea what it is.
  • Making an appointment at Mayo Clinic. The husband is frustrated and depressed with his erratic blood pressure and extreme mental and physical fatigue. He has had a brain MRI and tests for his heart and circulation but no helpful diagnosis yet. Ever heard of NPH? We hadn’t either but it is one of the possibilities.
  • Emptying out the house. Filling our container and returning it to storage until someday when we have another house to furnish.
  • Buying a small trailer for the things we want to take north.
  • Taking our trip to Wisconsin, via Greensboro to see Julie and possibly Madison, Indiana to check out Ron and Marlene’s project (this is the first they’re hearing about this though, so we will be flexible on that.)
  • We absolutely have to be finished traveling and in Wisconsin by the end of July because the first week in August is the Smith Family Reunion and we are going to be there helping it happen!

 

So a lot has been happening, even as some important things, like the sale of the house, have not been happening.  We are learning and practicing our waiting skills. And since it doesn’t make much difference where we wait, we will do it with family. We are not discouraged. The house will sell, eventually.

Internet Bondage

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One small bar and that little shield with the exclamation point… sigh.

It’s hard to explain this title. Let me start by saying that I’m in an “internet challenged” environment for the past three days and am feeling more affected by that than I thought possible. If I had purposely gone into the wilderness and left all my devices behind, intending to drop out of communication, it would be entirely different. Reality is, I have my smart phone, my tablet, and my laptop 2-in-1 with me and had thought this time away would be a chance to write and pay attention to my blog and keep up with what’s happening at home as well. Not happening.

Frustration was birthed on the first day when I wanted to make arrangements for my trip home – an overnight motel in Minneapolis and a car from Tampa to my home in Bradenton. This took hours of re-establishing connection and watching the little spooling dots go round and round. Some pages took so long to load, I thought my computer had frozen, so I rebooted, several times.

Multiple pop-ups warned me to get off the unprotected network here at the assisted living apartment where I’m staying with Mom. I had already considered the risk of all the senior hackers that might be nearby, but there was no way to console my frantic security program.  I suppose it was because I was in a different location that all my usual web venues decided to ask for passwords that I did not have with me. Add to that the apps that ask for information leading down a 10-minute-long rabbit trail, only to tell me something at the end that was totally undecipherable. At that point there were no more drop down menus, no back buttons, no boxes for input, no hidden arrows or xs, no hope… Ah, well.

You would think that I would not want to spread this misery around, but I do like to share. I decided to get my mom a smart phone. You see,  I have an “80 something” year old mom who goes on Facebook, GroupMe, does email and daily solitaire challenges.  In spite of what she can do, she has resisted moving on from her old flip phone, claiming that she is afraid of touching the wrong button, accidentally signing up for something she doesn’t want or getting her identity stolen. These may be valid concerns but, more importantly, we want to send her pictures and texts, 24/7, whether she’s on her computer or not. She needs a smart phone.

I mentioned that I was in a somewhat remote area, remote enough that even the Walmart here does not have things other Walmarts have. There were no simple Jitterbug phones for seniors. There was however, a Verizon store in an old remodeled house. Once inside, it looked less like a bed and breakfast and more familiar, right down to the four geek people, nonchalantly waiting to sell and up-sell. An hour and a half later I left with an entry level Samsung phone and a clear promise that it could be returned within 14 days if it didn’t work out (and an Otter Box, a PureGear screen protector, an offer to join Hum which I resisted, an offer to upgrade my husband’s phone which I rejected, a suggestion that my daughter upgrade her plan which I will leave up to her,  a promise that mom could come back to the store anytime with questions, and a request for a favorable response to the survey about my “experience”). Whew!

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We will keep this prehistoric device around for a couple more days, just in case.

A day later, we are enjoying (I think) our smart phone tutorials. I was able to get all my travel reservations accomplished. I am getting used to the limitations of connectivity here. I am resigned to the things that cannot be.

In retrospect, maybe I should have used the opportunity to distance myself from the frustrating world of the web. Yeah, probably, but I didn’t. It’s becoming harder and harder to do that, even though it is, at times, a frustrating place to hang out.  I have to wrap this up now – it’s been an hour since I checked my phone.

What has the world come to? Are you ever plagued with a dependency on your “devices”? Are you able to take a break from them and tell the internet to get lost? 

 

 

 

 

Battling Winter, post #4

We battle winter in much the same way as southerners battle the long, sweltering summers – we move from one “air conditioned” space to another. The difference is that we condition our air to be warmer than the outdoors and southerners condition the air to be cooler than the outdoors.

The condo that Mom and I are in has some lovely air conditioning features. One is the heating system itself. It is hot water heat that circulates through the floor. I often put my feet down and feel the warmth of the floor, which makes everything feel warmer. Another wonderful warmth comes from the fireplace. When you have a chill, there is no nicer way to warm up than to back up close to a fireplace with a glowing fire. Modern fireplaces can heat up a whole room in no time at all.

Doing things

While I spend time in various warm spaces in Wisconsin, I find many of the same things to do that I do in Florida. However, I think it is true that there is more time spent doing quiet things. The short days, the darkness, the cold, all give me excuse to stay inside and eat, knit, read, eat, watch TV, do puzzles, talk on the phone, look at Facebook, cook, and work, of course.  Mom and I do all these things, and while we do them we talk about  All of these normal activities seem different when I look out the window and see the bare trees and a world white with snow. I am glad and content to be inside where it’s warm.  20171219_2109471963711294.jpg20171219_211041291305750.jpg20171219_2109571623281655.jpg20171221_1855031082116113.jpg

Being with People

Some of my favorite times here in Wisconsin turn out to be in the car with people I care about, taking them where they need to go. Winter driving hazards can make it difficult to travel. Places people need to go are often farther apart. There is safety in numbers. So, we get chances to spend time in the car, talking to each other.  Last week it was an hour’s drive to Ashland with my aunt and uncle for a doctor appointment. I learned a lot about them during that time. Yesterday it was a drive to the hospital in Duluth with my sister in law for a radiation treatment. It was good just spending time together.

Thinking Right

In thinking about how I battle extremes of weather in the places I live, I’m coming to the conclusion that I had better do it mentally if I want to do it well. I need to set my mind to seeing the good, the beauty in my surroundings. I need to avoid isolation when it starts to make me uncomfortable. I need to be active when constant introspection starts to drive me crazy.  I’m just sayin’ that the battle isn’t always taking place where you think it is.

Battling Winter, post #1

Thinking back over the past few weeks, and the stories I have not told about them, makes me glad to be in my present circumstances where it is actually possible to catch up. I am with Mom, in beautiful northern Wisconsin, in my original hometown. No, there isn’t a medical emergency. No, I’m not escaping from the husband or any peril in Florida. I am here helping Mom battle winter.

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The loveliness of winter

Winter is a force to be reckoned with here. This area is a special part of the North American continent where the temperature maps show a peculiar dip in the cold zone. A finger of it comes south from Canada and curls around our river valley, making it slightly less habitable, particularly for anyone who is not fond of winter. The cold comes early and stays for months and leaves late in the spring. Some places much farther north, Anchorage Alaska for instance, have a warmer climate than this part of northwest Wisconsin.

It, winter, is a significant part of everyone’s experience in this small town. They all have wardrobes of jackets, mittens, hats and special suits, special boots, and special underwear – if they go outside at all. Those who don’t have to go outside, pretty much don’t.  The weather makes a lot of difference in how they go about their day.  Will the car start? Are the roads plowed yet? There are times when workers have to evaluate whether their job is important enough to risk 60 degrees F. below zero wind chill. That’s the cold, but there’s also the darkness. The sun goes down about 4 pm these days in December and it is still dark now at 7 am while I write. All this to say that winter can be tough, especially for our elders.

A lot of my family lives here because this is the land they know best. We started out here, are no longer too surprised by its harshness, and have learned to get along with winter. My Mom’s side of the family can point out the farm where they lived as children and many of her siblings came back after living elsewhere to make their home here. Some never left.

My dad’s side of the family also owned farmland and woodland, which my brothers now own and care for.  Mom lives in a fairly new, energy efficient condo, built by my brother on the farm where Dad grew up.  My brother’s house is within sight. The property used to be rural but now is on the edge of town. I could throw a rock and hit the local Walmart. We can walk to Pizza Hut in less than 5 minutes. My grandmother, long deceased, would not believe how things have changed outside her now renovated farmhouse. I’m not saying that this is bad. I’m just saying that it’s a lot of change in what seems like a short amount of time – but maybe it’s no so short. Time is funny like that.

So, winter has set in. I was able to fly to Minneapolis and catch the shuttle van going north. It was snowing as we approached Hayward, in the dark, last Wednesday. I was the last passenger to get delivered. The people before me had a home on one of the many local lakes. We tried three times to get up their driveway, but even though the plow had been through, the new dusting of snow made it too slippery to crest the hill. We went to a nearby boat landing that adjoined their property and they hiked/climbed, with their suitcases, in the dark, through the trees and the snow, to their house. They had done it before. I’m just saying, it’s winter and I’m in Hayward.

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Homecoming. Would you like to go through this to get to your front door?

The Work of Flying Home

It’s a sad way to end a vacation, but I’ve had a headache for over 24 hours now. Nevertheless, today the husband and I are traveling home by air. I have a new phone with a “learning curve” involved. I am flying on an airline with an unfamiliar app.  I am set up for disaster at worst, awkwardness and embarrassment at the least.

At the bag drop, I tried to pull up the boarding passes. I hate looking like someone who doesn’t know how to operate my devices when other people are waiting and looking (and my head is pounding) but clearly that was me.  The husband and I stepped away to figure it out. Our second pass in front of the same attendant was no better because even though I had found the boarding passes, they didn’t have barcodes on them. “Go print at the kiosk” she ordered.

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In my opinion, this app needs serious tweaking.

The first kiosk I stood at for several minutes had an “Out of Order” sign on it that I didn’t notice at first. The second kiosk refused to scan my passport and trapped me in a vicious circular message of how to do what I was already doing without success. The third kiosk also would not scan my passport. The attendant, who had been watching, came over to see what I was doing (to help the elderly, confused woman who obviously was having trouble and about to pound on the machine). She said to type in my name and forget the passport. Out popped the boarding passes, of course. We checked the bag.

Next, we entered the security check area behind an Asian family, non-English speakers, who were having an  interesting difficult time understanding what to do.  The grandmother left her carry-on bag on the floor in front of me and tried to walk through the metal detector. I called out to her and she grabbed it and tried to pull it through the metal detector with her. Didn’t work. She was sent back to put it on the x-ray belt, along with her coat which the TSA person had to nearly take off her before she understood what to do. On the other side she walked off with her suitcase but I had to chase her down and give her the coat. It was so distracting. I also had to remove my boots with their big zippers before I could go through and retrieve all my stuff.

One of my most important jobs is keeping an eye on the husband as we travel, presumably together, but often yards apart. If he falls too far behind I wait for him so he doesn’t get lost. I am quicker at reading signs and hearing what others are telling me to do, so he naturally lets me do the navigating. Do I always do a good job of this? No.

Next, the husband and I found a seat in the waiting area by the gate. All seemed well until we began to be surrounded by families with babies and toddlers. I counted at least 10. Don’t get me wrong – I love children, but I know how much they don’t like to sit in a plane for three hours. My headache intensified.

Two hours later, somewhere flying south, as the babies began to cry and the parents began to plead I finally decided to take some Migraine Formula Excedrin. I zipped up my down jacket, which had been serving as a pillow, and put it over my head. It was nice in there. Dark, warm, quieter.

After arriving in Tampa, the remaining tasks were getting our checked bag, getting to economy parking, and getting out of economy parking. Nothing went horribly wrong but there were glitches. My whole point is that traveling is an adventure with challenges. From purchasing the right tickets, to finding one’s way through the airport labyrinths, using technology, devices and their apps, keeping track of traveling companions and their needs, managing your own comfort, and ending up in one piece at your final destination – it is a job, on its own right.  Do I get paid for this?

Something mildly crazy happens almost every time I fly.  How about you?