New things in Life

Hello,

 

There are so many new things we have done this year. Like many of you we have worn masks many days when in public places. I don’t even think about it so much anymore. I might even touch my face much less than I used to touch it. Hand sanitizer and sanitizing wipes seem to be in my hand more than ever before in my life. Those two items have added much plastic to the environment. I am conscious of plastic because I just looked at a Kids National Geographic magazine. It is scary to know that there is a Texas size glob of plastic in the Pacific Ocean. It is killing many creatures. How long can the world survive with such destruction?

 

 

We have had walking sticks for some time, but seldom used them. Leroy frequently uses them now. We have also had the futon in the living room for a number of years, but it has now become an alternate bed for Leroy when he gets twitchy and edgy at night. He does not want to disturb me so much.

 

We “go” to church online. Not the same as being with others, but we are grateful for this opportunity. Live chats with video happen in several areas of our lives, both work and family.

 

Leroy is now using a pill box. One of those that has a week of slots to put the day’s pills in.

 

We had some ice packs in the freezer that just sat there until the times when Leroy spent almost the entire day with one on his head.  It is with gratitude that we had such a thing around.

 

Hand washing is more frequent and much longer than the flip, flip, and done method employed in the past.

 

Life changes and so do we.

 

Paula

Driving To Work

Hello,

 

Each day I have to remember to go to an alternate entrance ramp for getting on the interstate. Most days I remember before I turn the old way. I am happy that they do the road work because it means improved surfaces when they open once more. I am also lucky because I do not really go too far out of my usual pattern. It probably is about the same distance, but old habits are hard to break. When I come home I have to remember to get off at an earlier exit, but that is easier to remember because there are so many “road work ahead” signs that give me a tip.

 

On my last trip home I noticed that a car a ways ahead of me swerved to the side, but I could not see why. By the time I spotted a flat, black, three foot long thing in front, I had a car on the side and could not go into that lane. For some reason I did not think to go off on the shoulder even though it would have been possible. I seriously put on my brakes, but the car behind me was coming very fast so I released the brake and just hit the thing which banged up against the bottom of my car and flew up and off to the side. At that point the car behind me slammed on their brakes with a screech and careened to the outside almost hitting the thing. I was happy that my car could keep moving and it seemed there was no damage. When I stopped in the garage, I looked at the tire and under that car as if I knew what I was looking for. It all looked okay. I thanked the car for all of the service that it has given me. Cars really are quite tough things.

 

Leroy has been driving himself to work, but has not really driven any farther than that. I think he could, but he seems rather distracted at times so we are keeping on the local level. When we are together I drive.

 

Paula

Stars, Strength, and Stuff

Hello,

 

A lack of street lights makes the stars more visible to our city eyes. One blessing that is from power loss. The shorter days mean I am out when the stars are showing their beauty.

 

Leroy is working to get back some strength. He walked a mile to get a lab test. He walked by himself. I was just happy to learn that he made it there and back the mile home. However he was unhappy because he had a bit of cramping in his legs the rest of the day. He did use his walking sticks giving him a great sense of balance as balance also a problem at times. The doctor called and told him he could reduce the prednisone dosage another ten. Hurrah! Leroy told him about the cramping. The Doctor wondered if it was from the drug, but will see him in a week and do further testing if the problem has persisted.

 

This morning Leroy tried to do a push up and could not manage one. In the not so distant past, he could do at least five or six without much struggle.

 

 

Stuff in my life is increasing. I used to go to a store which sold things, especially things for my granola recipe, in bulk. I always took my own containers and felt so fine about keeping plastic out of the landfill. After the pandemic started I can no longer take my own containers. I feel sad getting all the plastic bags. I still take my own bags so I can carry it out. I do not put it on their counter so it stay clean. I pack it myself without touching other things. So at least I am not bringing home numbers of bags that once again end up in the landfill. At some of the other grocery stores, after paying, I take the things to my car in the cart, and load my own bags there.

 

Paula

Flowers In the Fall

Hello,

 

I cleaned up three more house plants and brought them inside. It feels good to get that done with only two outside. We also bought some potting soil today so I can bring in impatient slips as well as the begonia that is enjoying its time outside. I also like to take slips from the coleus. I took care of a plant that Leroy had had on his desk at work. It needed a larger pot so it does not fit on his desk. He has placed it out in the library by a window. He commented that they would welcome some more plants. Most of the plants I have are at bit small for a large room, but he is going to take another grouping that is in a basket and put it on a stand. That means we will have more room here and it might brighten up the library.

 

The impatiens look so good now. It has taken much time for them to grow. I suppose I should have watered them more. I am happy to see them when I go out in the yard. Always good to find beauty.

 

The begonia also looks quite good. I learned it is a gryphon begonia. It is nice to know the name after two or three years of keeping it alive. I did read too that it is a low maintenance plant. So that might explain its survival of my neglect.

 

Leroy and I took a nice long bike ride today. He told me he enjoyed the ride, but is so wiped out now that he wonders if he should just take off a lot of time and sleep for hours. The trouble is that he often cannot even nap for very long any more. We are hoping it will be better when the meds are reduced.

 

Paula

Bad and Good

Hello,

 

Yesterday Leroy had a bad day. It did not help that I was not home to cheer him on. He said, “It is like it was two months ago.”

 

However when I questioned him more closely I learned that the pain was not that bad, but he had some trouble with balance and just not feeling peppy and good.

 

In the evening he attended a spiritual group which helped him to feel better. After that we watched a documentary called, Mister Roger & Me. We both cried during this show, improving our mood and outlook on life. It was great to go to bed with good things buzzing around our heads.

 

This morning Leroy woke up and announced, “I feel so much better today than I did yesterday.”

 

Can you imagine our garage doors both work? Both of our cars can be inside. No more morning clearing the windows of dew, etc. A single door will be installed when workers can be found to do it. Since the storm all construction workers are working many jobs.

 

We had a team meeting at work for the first time since March. We all wore masks and sat a distance apart. It was great to see other. We are a small team and I miss my co-workers.

 

Leroy and I had planned to give our old phones to the women’s shelter. We have hit a snag because they do not want them without a charging cord and we wanted to keep our charging cords as spares. We will have to ponder and come up with a solution. I just realized that we could buy some cords. It is ironic because we have given away a bit of money to food banks etc. since the storm, but we are balking at buying new cords which are a much smaller amount of money. I thought we were logical people, but maybe not.

 

Paula

More Days Outside

September 20, 2020

 

Hello,

 

I work on Thursday and Friday so much of those days is spent inside. On Saturday Leroy and I went to a county park situated at the northern edge of the county. We were hoping for little to no storm damage and were not disappointed. Even though the park was small there was a nice walking trail on flat ground that Leroy could handle very well. We heard three owl calls. I am always surprised to hear them in daylight hours, but sincerely enjoyed it. For sure there were two owls, but there might have been three or one moved to a different location. Some small bushes had changed to their fall colors so that was nice too. Leroy was excited to find hickory nuts on the ground. A few wildflowers were still in evidence as were several dragon flies that came up to check us out. It restores my soul to see this.

 

This afternoon we rode our downstairs friends’ trikes. Leroy is a little concerned about balance, although that is getting better, it is great to have these that we can borrow. We rode down to the lake that is close to our house. I was pleased that Leroy wanted to ride all the way around the lake. We did have to rest a couple times, but it was all good. We are getting some exercise and working different muscles. On Friday, Leroy rode a nice distance up the trail by himself. He has not gone alone much yet, but that is coming soon.

 

Paula

Each Day is Different

Hello,

 

Leroy dragged yesterday, today he got up quite peppy, but came home dragging and tired. After taking a pain pill, eating a snack, and lying down a little, he seems to feel better. Obviously this is not a quick fix illness. It is much better than it was a month ago so that is encouraging.

 

I am pleased with myself. I have gotten quite a few small tasks finished. It helps my psychic to clear papers off the desk. I know it is considered more creative to have some clutter, but it seems to clutter my mind so that I do not function very well.

 

I walked though the college campus that is close to us. There was a row of trees that had holes in the trunk. Leroy and I often wondered how they managed to stay there. They are all gone now. I miss them as old friends. They did have some nice spring flowers.

 

We now have our home phone functioning again. If you want to call us at that number you can. The number is 319-382-0080. When it did not work we thought about just having cell phones. We were going to cancel the service rather than spend the $150 for the box, but the company sent us a free new box so we can connect to the Internet once more. Guess they like our business. It took a while, but after spending much time on the phone with them, Leroy got it up and working.

 

Life is indeed returning to pre-derecho days because we have now two cars available for our use, phone, and internet all work. Our new cell phones probably have all sorts of treasures that we are not aware of, but they work well for the things we know about.

 

Paula

Good Day

Hello,

 

It has been a good day. I have a new standard of good. It all seems to involve Leroy and how well he is doing. It helps that the sun is shining. Somehow that always lifts my spirits. We have been outside to pull a few weeds. Then Leroy got inspired and swept the sidewalk. Our downstairs friends left two crates of walnuts so the squirrels would have some food. Just a comment, the squirrel population is definitely smaller after the storm. At first they seemed as dazed as we were. But now they have perked up and are back to their usual tricks of burying nuts where we do not want nuts. But they have been taking those walnuts and peeling off the outer husk over the sidewalk. Consequently the sidewalk was littered with husks. Leroy has removed them. I certainly appreciate that.

 

Leroy and I went out for a bit longer walk this morning. It was quite fine because he did not get so tired. That gives us something to look forward to. Stronger each day? At least his jaws no longer hurt when he eats. He is eating more even though it is not up to his former speed. That former speed was sometimes too fast to be polite.

 

 I walked alone this afternoon. That was nice because I walked a good long time. For the first time in weeks I actually got to 10,000 steps. Even though it is Sunday, people are working repairing roofs. I wonder if one guy was an insurance adjuster. They have a lot to do so they are working seven days a week here to recover from the storm. There is so much to be done before we have all things in a good place. I do not say normal because some things will not go back to normal. We forget that change is normal rather than static positions.

 

Paula

Lower Dosage

Hello,

 

It takes a blood test to determine if Leroy can move to a lower dose of the steroid. He was to have the test on Monday, but today was ten days from the last time that it had been lowered. I was impressed with Leroy’s moves to get that changed. He is feeling so much more like his old self. He called and found that he could go to the lab after I picked him up from work. Things moved smoothly. It was close to the end of their day and no one was waiting so he went right in. The lab promptly shipped off the response to the doctor who left a message on Leroy’s email that he could drop 10mg. starting today and that in a week he could lower it ten more. He is so happy not to have to wait until Monday to make the change. It is certainly a love hate relationship with this medicine. Love because it brings his headaches under control (still needs pain meds). Hate because it produces serious side effects. He is now taking half of the amount that he was originally. All this makes my life a little easier too.

 

One side effect is that Leroy gets so anxious. He tolerates no stress. In the evening he becomes quite upset. For two evenings we have just laid in the bed under more weighty blankets with me holding him as closely as I can. For some reason, that seems to relax him quite a lot. He has said it and I can feel the tension go out of him.

 

We are certainly being introduced to many new things. Before, did we live with our heads in the clouds? It is one thing, at least for me, to hear about this from others and quite another to live through it.

 

Paula

Leroy At Home

record of August 19

 

Hello,

 

I can no longer remember the entire plan, but Sarah went with me to the car repair place. When we learned that the car would be fixed right away, Brian came, picked up Sarah and they proceeded to his house in MN. I went walking on the bike trail that is close to this shop and spent some of the time crying for myself, for Leroy, for the damaged trees, and damaged buildings. It just all seemed so overwhelming. I had not brought anything to blow my nose, but it was good to cry. It was more stress than I ever remember dealing with at one time. I almost forgot there is the pandemic. At least Leroy was getting well, our one available car was getting fixed, and we had power with the blessings that go with that. Plus, Miriam and I were going to the grocery store, unlike some of my neighbors, we were not food insecure.

 

Leroy and I have not given much help in the area, but we have contributed to the disaster fund at our church as well as a neighborhood food bank. It is a blessing to be able to give to others.

 

It was a different experience to have Miriam here by herself. We do not remember such a thing happening. Miriam and I spent a bit of the afternoon with Leroy before he was checked out of the hospital. It is one of those times where we were getting concerned that the Dr. would not see him and he would be there another night, but it all got done.

 

It was so good to have Leroy home again. I found myself hovering over him if he acted the least bit upset about anything and a month later I am still a bit on edge, but it has been fine.

 

Leroy was getting fixed, the car was fixed, and my tooth was fixed. Life seemed complete even without internet accessibility.

 

Paula

Going to the Dentist

record for August 18-19^th # 13

Hello,

 

It was expected that the dentist appointment for the new crown would take close to an hour. Sarah was hungry so she drove me there and then went home for lunch. Great to have children here! I felt supported in a way that I have not in some time.

 

The dentist had hoped that I would have brought the temporary loose crown, however, it was safely sealed in a bag at home, since I was coming from the hospital I had not even thought about it. As it turned out, all was good. The job was completed more quickly than expected. It has been so great not to be concerned about chewing and hurting myself. When cool water would touch that spot it was a bit painful. The dentist had had a very negative experience with prednisone. He was telling me all about it when his hygienist must have given him a look because all of a sudden he said, “It is keeping Leroy from going blind. So that is good.”

 

I have learned that many people have had negative experiences with steroids. Certainly it is nothing to treat casually.

 

After this Miriam came. It was good to see her, but I felt a bit bad that she had made such an effort to come and her dad was now much better than he had been. Emotions are so tangling, aren’t they? I want him to be better and Miriam here.

 

Leroy went down for a biopsy on the blood vessels in his head, confirming the neurologist’s diagnosis. It is good to know what we are dealing with for sure. One of our children commented that it had been years since they were in a room together without spouses or children. We even took a selfie with the five of us.

 

Each day is a little forward and a little backward for Leroy. I am glad that someone told us that it would not be a straightforward journey. At least the headache has never been up to its previous high level. Leroy has a trouble with anxiety especially at the end of the days. He has a prescription to help with that if needed. We assume that the anxiety is from the steroid and not from the disease. Later this week he will again lower the dosage. He is so happy each time that happens.

 

Paula

Observations

recording for August 18 # 12

 

Hello,

 

Sometime in all this Leroy drama, I saw that the brake light was staying lit in the car as was the ABS light. Nothing I wanted to see. I have always let or made Leroy take care of car things. He was obviously in no condition to deal with this. At least in the day on the 18^th he was quite rational. He really thought there was no reason for him to be in the hospital. He could tell me the name and phone number of the place he takes the car. I called hoping they could see me soon. They said they could look at it if I could come soon. Sarah and I went, they did the computer check and then he crawled under the car. He had taken a picture and wanted to show me the broken wire under the back passenger side. I was impressed with him. He treated me with respect. “You must have driven over a branch that tore the wire. I can order a part and fix it tomorrow morning, but you can drive the car like this for a while.”

 

I had driven over many branches since the storm came to town. At times, I did wonder what damage was being done. At least my car was not totaled as so many were because a tree fell on them.

 

I decided to try to call the dentist. Maybe you remember that I had a temporary crown come off the day after the storm. The dentist was open. When they heard about my loose temporary crown, she juggled others appointments around so I could come in about half an hour for then. I had had an appointment for the day after the storm, but not power means no dental works can be done.

 

Paula

How Things Are Today

Hello,

 

I want to address some of your concerns about how things are now. They are much better. Leroy has been diagnosed with Giant Cell Arteritis. The steroid dose has been lowered twice and with that he feels better. He still gets a bit anxious from time to time and does not handle stress or frustration well. His short term memory is not so good, but it seems to be coming back. He can only take a short walk before he has to go home. Because of balance he is only riding the tricycle and with me. There is a single person tricycle available, but he is concerned that he might get too tired to get back home and it would be quite the struggle for me to do that from my own bike. So we ride the two seat bike. It has worked well. He can coast if he needs to rest.

 

On a side note, we had that derecho on August 10 four weeks ago. This morning on the weather, it was predicted that we could have some strong winds today of 40 mph or above. I could feel a little panic run through me, wondering what I should do. This is not winds over 100 mph, but we have many dead branches up in trees. What if they were blown out? There are still many things on the ground that could be blown around. It just does not feel safe. I suppose this is a very minor PTSD reaction. It was raining in the night and I also felt nervous then, even though it not such a strong wind with it.

 

Leroy is good more of the time even if not as peppy as he once was. Sometimes he is so chatty. I wonder is that the medicine effect?

 

Paula

More or Less Stress

for August 17-18^th #11

 

Hello,

 

Brian said, “Dad peed three more times. This is unacceptable because no one has come to get him dry. I am going to speak to them on the way out.”

 

At my look, he added, “I will be diplomatic.”

 

As I got settled in the chair I noticed that Leroy’s cold, blue, feet were uncovered. When I reached to pull the sheet down, I could feel the wet. Then I felt at the top and he was wet almost up to his armpits. I just sat there contemplating life. When no one came I buzzed for help. The response was, “We have a lot of critical cases right now so it will be a while.”

 

I just wish I knew what to do to get him some dry sheets. I cannot tell you how much longer it was before someone came, but I know that the total wet time was more than two hours. I was cold in this room, and I could not imagine how Leroy felt.

 

When someone did come to change him, she asked him to roll over and he would not/could not do that. She moved him and got off the wet stuff and dry on. Then she said, “You will have to have a catheter or a diaper (She called it something else, but I cannot remember the name.)We cannot come in and take care of this.”

 

Leroy became quite agitated at this. So she just left a urinal or whatever they are called. I managed to help Leroy get it in the container two times.

 

I had thought we might get to a room sooner. But after she left we were alone for a long, long time. Leroy started to talk a bit more in the whispery voice. He told me to tell many people good-bye since he would never see them again. Then he said, “Don’t you cry.”

 

I did not really think he was going to die, but I was afraid he would never be a sane person again. I felt like crying because of helplessness.

 

I gave Leroy my light blanket, head pillow, and knee pillow since he had none of those things. I persuaded him to roll over to his side so he could see me and try to rest as he said he was tired of lying on his back. After a while he actually went to sleep. I hung out on my chair reading, or texting the kids (I did not think, but I was keeping them awake.) Sometimes I put the book away and rested my head on the bar on his bed. I once leaned down with my stomach on my thighs because I was afraid that I would fall asleep and fall off my chair. I did sleep a little in this extreme forward position.

 

When Leroy woke up at three in the morning he started to talk and sounded much more like his usual self. The nurse came back at about four, “Your room is ready and we will move you up.”

 

Leroy said, “I would like to go home.”

 

She looked at him in astonishment and said, “What? You want to go home?”

 

She said, on her way out of the room, “I do not have the orders for that. We still want to observe you so we will take you up to the room in ten minutes.”

 

After she left, Leroy told me that I could go home. He was no longer afraid of being alone. I waited until they came to move him and then I did go home. Such a long harrowing night! The streets were still in their after storm strangeness with branches piled up in places and only a few stop lights working.

 

We believe that Leroy’s episode was from the strong dose of prednisone that he was taking. Luckily now it has been reduced two times.

 

Paula

More Stress

written about August 17^th

 

Hello,

 

In the morning of the 17^th, I said to Leroy, “You look so tired, why don’t you take a nap?”

 

Leroy replied in his whispery voice, “I think if I close my eyes I will not wake up again.”

 

With little success, I tried to convince him otherwise. So he stayed up and we got to see the new TV up and running, but not as completely as it could be because the internet was not available. The new appointment was set for August 29^th. Maybe that would happen.

 

Leroy continued sank into more and more despondency. After we had eaten in the evening, Brian noticed that Leroy was not walking very well. Brian supported him and then Leroy became even more distant. Brain asked Sarah to help him get Leroy to the car and we would go back to the ER. Leroy could not seem to think to move his feet. Sarah moved his feet and Brian held him going down the stairs. On the sidewalk Leroy did move his feet, but there was a certain amount of pulling and tugging to get him to the car. Thank God! Brian and Sarah were here. I could not have managed this on my own.

 

At the ER, Leroy was barely talking, just moving his hand frantically if he wanted something. Brian stayed in the room with him while Sarah and I sat in the waiting room, then I went back to be with him. By this time he was barely talking at all, but agitatedly tapping his hand on his leg or stomach. Brian had said that all of his vitals were good. I could not interpret all of that, but I could see his blood pressure was a little higher than usual.

 

We could again use the internet at the hospital so we had good phone service. We let Miriam know that we were back in the hospital. She immediately started wondering if she should come. I suspect she felt a bit left out. It was hard to know what to tell her.

 

When I went back in with Leroy he kept waving his hand toward his groin. “Do you have to go potty?” I wondered. He shook his hand no, but kept pointing. I asked, “Did you wet yourself?” I asked.

 

He nodded. I buzzed the nurse and let them know. No one came. The doctor came in. He commented, “I do not know what to make of this because all of the vitals were good, but he is not responding. I want to have him stay overnight so we can observe him.”

 

I went back out to let Brian have a turn and we talked about what to do. There was some discussion among us, if perhaps Brian should stay so I could get some rest. Leroy had indicated that he was afraid and not to be left alone. He thought he was going to die. In the end I stayed because Leroy wanted me there. I did go home with Sarah to collect a light blanket, small pillow, and my knee pillow so I could sleep in a chair if needed.

 

In the meantime Miriam decided that she had to come.

 

To be continued.

 

Paula