Living Well with a Bad Diagnosis - Lung Disease

Wednesday, March 31, 2010

Plus Three

This photo of an autopsy lung with end-stage pulmonary fibrosis was taken in the early 1980s and digitized in 1999. It shows the honeycombed lung. It is my future.

I have just been told that there are three new pulmonary patients in the 8-week rehab classes. They are in the gym just before we begin at 12:30. The head of the pulmonary program will usually tell me that she has “fresh meat” coming into our class for maintenance. She can’t say what they have but she will very quietly say, “They will need you.”

What she means is that they are going to need to talk, feel comfortable in the class, encouraged, folded into the class with the others and just propped up. If I may be so bold, I must say that I am really good at that. We fold them in and they become friends.

The three new patients are from an interstitial lung disease specialist at my university hospital. WOW! This has never happened before. I am thrilled that they are now recommending rehab for their interstitial patients. It has staved off lung transplants for me as well as improving my quality of life.

I began talking with one of them who is an older gentleman. He was telling me that in the ILD classes at the university hospital, they are recommending a supplement for their ILD patients which helps slow down and possibly prevent fibrosis – the major problem of my disease.

The inside of the lungs are the same cells as on the outside skin of our body. When you get a cut, a scab forms then a scar. The same process happens in the lungs. As each “cut” in the lungs happens due to the disease, the scab and scar form which makes that area tighter/smaller. This is very basic and I am sure the doctors who read this are screaming at me that it is not quite that simple. Sorry.

The supplement is called N-Acetyl Cysteine and must also be taken with Vitamin C. Mega doses can be deadly. I just ordered some online. I will report back to you if I notice any improvement in my breathing.

Tuesday, March 30, 2010

Santa Cruz

In our quest to do things out of our routine, Sunday morning we climbed out of bed early to begin our road trip adventure to Santa Cruz. I had researched and found a great dive for breakfast. We were ready except for one thing: we never made it to Santa Cruz! The best laid plans…

The weather was so cold and cloudy that we didn’t feel like a long drive. Oops. This was discussed in the car as we left the house: "We are up. We are dressed. Where should we go?"

We headed over the pass to a really famous place about 20 minutes away called Buck’s. It is best known for all the business deals that were made in their booths during the Tech boom. Great food. Great people. Just an easy drive away. We even found a bit of sun.

We arrive as they opened at 8:00. We left at 8:30 and home by 9:30. It was a beautiful ride there, we talked to the nicest people, Michael had their famous Eggs Benedict which he said was the best ever and we came home relaxed and happy. We really had a nice time.

Just not the day we had planned.

When we got home, bills were paid, a tablecloth was ironed, files were updated, and Michael bleached the back stone patio. It was just another normal Sunday after all.

Monday, March 29, 2010

Walking Together

Re-reading some of my latest blogs, I have realized that I have changed the focus. Initially, I just wanted the facts to be reported to you, dear reader, so you could understand what we have faced.

Later, I reported topics related to being ill or having a fatal diagnosis or about the people who have come into my life because of being ill.

Just recently, I realized that I am writing about the present. What is happening in my life right now. This worries me. The most interesting blogs, I think, are when I am able to see the long view of an issue – over time. My hope is that I can still find the overarching issues and still be interesting.

I hope you keep reading this blog.

I always thought that Michael, relatives and some really close friends would walk this final stage of life with me. Now I realize that we, dear reader, are walking together to the end.

Sunday, March 28, 2010

Life's Rhythms

Have you ever noticed how sometimes all of your appointments, visitors, concerts all arrive around the same date? Am I the only one that this happens to? My appointment book has many empty weeks – except for rehab – then suddenly huge clusters emerge.

For example: I just made the appointment with Dr. K. It is the day after Mary’s visit in May after my orchestra concert. She was booked the rest of the month. This is also the date that I am shooting for to shock her with my weight loss.

The culmination of six months of planning on all fronts will arrive within days of each other. I will be exhausted and probably looking tired. Not how I wanted to see Dr. K.

It is what it is.

Dr. K. will be happy with my weight loss, my performing with the orchestra, my travels, my energy and good health.

Saturday, March 27, 2010

Oysters and Sardines

Since I have to drive 25-30 miles every weekday to rehab, I usually stay home, do the laundry, the gardening and pay the bills on the weekends. I rarely leave the house.

So, it was a shock when we took off last Sunday morning around 9:30 for a beautiful drive. I had been along Tomales Bay north of the Golden Gate Bridge many years ago for a retreat at the Marconi Center with the school. Michael had never been along this stretch of the Coast.

The Bridge was not crowded and the long drive through San Anselmo and Ross was no problem. Soon we were in the Samuel P. Taylor State Park than a National Park. We drove through huge redwoods along a creek then it opened up to pastures, horse farms and those spring green hills. Simply beautiful. The sun was out, no wind and warm. We had the windows down and the sunroof opened. It was so peaceful.

We wound our way to Olema then north on Highway 1. We stopped at a shack in Marshall and had oysters sitting outside right at the water's edge. There was not a breath of wind. We sat and just drank it all in. Michael ate six raw oysters and three Oysters Rockefeller while I had some chowder and three of the cooked oysters. We didn’t want to leave. There was no one there! No tourists! It was marvelous.

We kept driving north and saw Nick’s Cove. This is a much-touted rather new restaurant owned by a famous San Francisco restaurateur. We heard that he threw millions of dollars into it to make it look like a shack. Well, we just had to stop.

So, Michael had six more raw oysters from various areas and three of my perfectly cooked oysters with just a dab of BBQ sauce. He also had a spicy crisp Riesling with the oysters.

I have been on a hunt for fresh sardines for months because all the food magazines in the past two months have recipes about how to cook and serve then – not the tinned ones. I cannot find them in any of the grocery stores. So, I was thrilled to see fresh Monterey sardines on the menu. We ordered them. Three arrived with their heads attached. They were crispy and were served with picked red onion on a bed of perfectly dressed greens. Very rich. I could only eat most of one.

I was so relaxed that it was a struggle to leave the restaurant. We climbed back into the car and made our way north to Tomales then headed east on a road through dairy farms and rolling green hills to the freeway just north of Petaluma. Even driving back over the Bridge and down our Coast was really easy. No traffic.

We arrived home at 4:30, totally spent, relaxed and happy. I was in bed by 7:30 and slept until 8:15 the next morning.

We are now planning to drive to Santa Cruz for breakfast early next Sunday. A year ago, I would not have had the energy.

I so hope this era of growth and wellness continues.

Friday, March 26, 2010

Twenty Years Later...

Life does run in cycles. Some years we go to many weddings, others baptisms then others funerals. I think this may be the year of funerals. We went to our friend’s mom’s funeral on Tuesday. This is the third one so far this year!

My mom arrived on Monday in anticipation of our tax appointment on Tuesday. Following the tax appointment, we went to lunch then the burial ceremony at a cemetery at the top of the pass.

During lunch, Michael phoned to warn me that the twin was going to be at the services. Now, in the past, that news would have made me physically shake and I probably would have stayed away.

But, this is a different year.

This is the year I am kicking down the sides of my boxes.

This is the year I am going outside of my comfort zone.

I said to Michael, “Fine but I need you to stand beside me. I don’t want any conversation with him without you hearing it.” Remember, Michael didn’t know whom to believe after our last conversation 20 years earlier.

What I didn’t know until later is that Michael had not told the twin that I was going to be there.

We arrived early only to discover the funeral procession was also early and we were in the middle of it. They were stopped, I looked up and Michael was walking over to our car. He paused at a car ahead of us then joined us for a moment. “Who was that?” I asked thinking it was one of our friends. It was the twin.

I swear I did not get worried or nervous.

We followed the procession around until we parked in front of a mausoleum and the saw that the services were going to be outside. We parked, Michael was in front of us and the twin was parked two cars ahead of him. As he was just standing near his car, we were going to have to walk right past him.

Now, it was very cold and very windy. My mom does not like the wind to mess her hair. She is a Leo, after all. Michael took my arm and with my mom beside me, we began to walk. The wind kicked up and now all three of us had our heads down trying not to be blown to bits. Michael leaned down and quietly said, “Do you want me to introduce him to you?” And with that, we began to laugh.

The twin was still standing near his car. We passed. We never looked at him. He never looked as us. (Mom said she glanced over and he was looking in the other direction.)

I hugged our friend, his sister and father, introduced my mom and had a great chat with his teenaged kids. His wife, the one with the lupus and pain, was not present. He told me that she was at the funeral but couldn’t take anymore. He said it in a very disappointed manner.

The services were on a small lawn in front of the burial site right along the road. We stood in front of a short fence near mom seated in some chairs. At one point, Michael was looking around and I asked, ”Where is he?” He replied, “Right behind us still at the car.”

Just after the services, I walked a few steps to talk with our friend again and noticed the twin driving away.

After twenty years, I realized that he was intimidated by me. Scared of me. It was almost a moment like in the Wizard of Oz when Dorothy learned that she had the power to go back to Kansas all along.

The next day I asked if my name was brought up during their lunch together. Michael said that the twin never mentioned me at all.

All the angst is gone. It is like the final sentence of a song from A Chorus Line, “And I felt…nothing.”

What a year!

Thursday, March 25, 2010

Bully #2

To continue from yesterday, the second bully was in high school. William had learned Korean defensive martial arts when he was in 6th through 8th grade. He was a third stripe brown belt when he left. He could handle himself. He was also 6’1” as a young freshman.

He was walking down the hallway at a private boys’ high school when a kid and his friends passing him threw him a shoulder. William kept walking. That is what they taught at the martial arts classes: walk away.

The kid shouted, “Hey, freshman, just going to run away?”

William sighed then stopped. He turned, set down his backpack and walked towards the bully who was shorter than he was. William grabbed him by his backpack straps, lifted him off the ground and threw him into the lockers, which he said made a tremendous sound. It was so loud; it brought the teachers out into the hallway. By then, he had dropped the guy to the ground and whispered into his ear, “Don’t f*** with the freshman class.” He then picked up his backpack and slowly walked to his class.

This happened during the first several weeks of school. It never happened again.

Wednesday, March 24, 2010

Is it a Boy Thing?

I know girls often fight with words. Boys tend to get physical.

I guess writing about our drunken neighbors and Mary sending a young Michael back outside to defend himself, my mind drifted to the bullying challenges our son faced.

Two times during William’s childhood, bullies confronted him. I found out about the one in elementary school only after he had been abused for several weeks. I think he was in 2nd grade.

He finally broke down and told me that an older boy was constantly coming up behind him and whacking him on the back of his knees causing him to fall. He would do this to William coming off a bus, waiting in line to go to class, at lunchtime, all day. No teacher saw it. He was far too cleaver. William had enough and just didn’t know what to do.

I told him that he had to take care it or it would never stop. I told him, “I give you permission to do this: Next time he does it, get up, turn around and hit him right in his nose.”

William was shocked. This was not the answer he expected.

I continued, “You might get it trouble (this was before the zero tolerance they have in schools these days) and you may have to do detention. But you have to make this stop.”

He said that he thought I would be mad at him for hitting him so he had done nothing but take it.

The very next day, the kid whacked his knees, he fell, and as he got up, he turned and looked at a very startled face. It became even more startled when William hit him squarely in the nose. The kid was shocked but he never told on him. He also never bullied him again.

Next: Bully #2

Tuesday, March 23, 2010

Life Lessons from the Projects

Talking about the neighbors yesterday reminded me about a story Mary told me. When Michael and the twin were pre-teens and living in the projects, they came home crying because kids said they were going to beat them up. Mary told them to get back out there and to defend themselves. Learn not to be scared. Learn not to be bullied. Learn to defend yourself.

She was tough.

Just a couple of times I have seen Michael's “project eyes” as I call them.

The one time I remember was when William was just a toddler. We had never heard a peep out of these neighbors who were kitty-corner to our back yard. Their son was a student at Stanford. They also had a hot tub and several of his friends over to clearly celebrate something.

Around 2:00AM, we were awakened by music blasting away and loud hoots coming from the friends in the hot tub. Michael grabbed a pair of pants, no shirt, no shoes and went out to have a chat.

He peeked over the fence and said, “Hey. It’s 2AM. Turn down the music.”

They looked at him and continued to party.

This is where the lessons from the projects kicked in. Michael, in one leap, was standing on top of the fence. With that “projects look” in his eyes, he said very firmly, “Either you turn down the music or I will come down and turn it off. If I have to come down there, someone is going to get hurt.”

With that, they turned off the music and went inside the house. His eyes said he meant what he said and that he was able to back it up.

We have never heard a peep from them since.

If you, dear reader, knew my sweet, quiet, soft-spoken husband, you would not believe this happened. I also know that over 25 years later, there is no way he could jump onto the top of any fence these days!

Monday, March 22, 2010


We love our neighbors. We are dear friends with all of them except the one right next door.

We have had a huge amount of problems with them from the moment they moved in years ago, which I won’t detail but will just say that they both have been arrested many times and have multiple DUIs. They raised two kids, the son escaped and married into a great family but there are rumors about the daughter, which I hope are not true.

Michael has known some people who had issues with alcohol. He said to deal with our neighbors; we pretty much must ignore them and their bad behavior. Ignore when they pour bleach onto our shrubs to kill them, when they wake us by crushing lots of cans outside our bedroom at midnight, when they tie tampons to one of our bushes, toss lit cigarette butts on the dry mulch along the fence in our yard, throw clods of mud onto the side of our house, toss small vodka and beer bottles onto our lawn and oh so much more.

Michael told me what he learned is that people who are alcoholics try to blame everyone else for their bad behavior. If we were to say something or retaliate, they would then feel justified in and would continue to ramp up their bad behavior.

They are usually fine for a while until they get emboldened and then they do something stupid. We know that it is a cycle.

The police are often at their home. One neighbor called Child Protective Services when their kids were younger. Another called the police every time they were outside smoking and screaming at 2:00AM. This happened a lot. It still happens but not as much.

The only time we had to call the police was when he came to our house wanting to talk about a new fence late one evening. We were in the middle of a movie; he was totally drunk so Michael told him that we would get together on the weekend to talk. He went nuts. He was winding up for a fight. As Michael was raised in the projects, he knows that you watch their eyes, stay close so they can’t swing at you, and try to back them up with your body. He then threatened to kill Michael. We called the police incase we were found dead in our bed. We did not press charges. Did I mention that he is a hunter and has guns? Swell.

What has always bothered me is that neither of them will face real consequences of their drunk driving until they hurt or kill someone. When are five DUIs going to be enough to revoke a driver’s license for life?

So, with that as a background, I just heard him working in his garden. He has a gas mower, a gas leaf blower and a gas edger. They are extremely loud. Also, the fumes from these power tools kill my lungs so as soon as we hear them start up, we run to shut all the windows and doors in the house.

When he is finished, we can look out onto the street where he has blown all of his garden trash, also into our yard and the yard just across the street from him.

Everyone notices. He thinks he is being cute and cleaver. We say nothing. We clean it up.

From outward appearances, they appear so normal. There is always a flag flying and cutesy things in their yard to celebrate any and all holidays. What is sadly amusing is with their horribly destructive lifestyle and with the pollution and noise that the garden tool spew, they own a Prius.

They think they are being politically correct and saving the planet.

Sunday, March 21, 2010


Yes, we are turning in our tax information to the accountant on Tuesday. It is always interesting to look back on the year to assess our medical expenses.

In 2009:

  • I drove almost 6,000 miles to rehab and doctor appointments.

  • Since I had the surgery and was not able to attend rehab for awhile afterwards plus we took four weeks off during our trip in May, the rehab costs this year were less then usual - $841.00. Worth every dollar.

  • I spent $1,352.13 out of pocket for prescription drugs. Thank you Medicare!

  • Besides paying for Medicare, I added supplemental insurance through AARP for $3,997.00. Michael has Kaiser and his premiums were $4,713. There were other minor medical expenses for eye care and lab results.

Not bad. It was the least expensive year I have had since becoming ill.

Saturday, March 20, 2010

More Expansion

We have been invited and have joined a book club. I love books and devour them. Michael, not so much.

We were invited to join just a week before the first meeting. I called and left a message early Friday morning to cancel because I had not read the book recently – I read it over a year ago – and we couldn’t even rent the movie for Michael– “21.”

So, on Friday, I cut the grass and did the rest of the yards, ran errands, had a friend down for lunch and thought I was going to snore early. Ha!

Our friends called around 5:00 that evening and would not hear that we were not coming: “Come! Please! We won’t take no for an answer.” The friends who invited us are of the best kind: old and comfy. Okay, we will be there.

Now, as you know dear reader, stamina and energy conservation are huge issues with me. I am very careful not to over extend myself and, on top of the normal stuff, my mom is coming in for her tax appointment on Monday. Normally, I would never extend myself this close to company.

But, this is the year of expansion.

We went. We had a ball. There were four other couples, the host couple and lots of wine and food. One couple moved from Detroit three years ago and they are CAR PEOPLE. Michael was in his element. We loved them both.

We all talked briefly about the book and got it out of the way. Everyone was having a great time chatting, eating and drinking more wine than I thought possible.

It was a shock to realize that we were the last people to leave at 1:00AM. Yes, that’s right, I was awake at 1:00AM! The world did not come to an end!

A year ago I was recovering from surgery. There is no way I could have been playing in an orchestra, having a friend down for lunch, or even having a nice conversation about books with old friends.

Love this expansion period!

Friday, March 19, 2010

The Earth Abides

I don’t know if it is my age or my illness but I recently seem to able to see patterns and cycles of life. It is so odd how life is unfolding itself before my eyes.

Watching a friend making the same mistakes over and over again, each time taking just a bit more of her soul though never addressing the real problem.

Watching a person from afar who is not a very nice person get away with doing bad things for many years. The payback will be at the worst possible moment in his life.

Watching a person who thought he was so much smarter than everyone else lose it all. Everything is gone: business, marriage, house, and money. Now he believes it all “happened to him.” In truth, he was not paying attention to any of the above. Too many ski trips to Italy. Too many nasty controlling comments to his wife. Too many shaky, underhanded business deals that failed. He was always looking for the big jackpot. He always wanted to be the “big man,” the smart businessman. He has nothing except several lawsuits against him.

Another who borrowed money from his family and friends for a business, which is now failing. He has no guilt. I can see that his drama has yet to be completed as lessons have not been learned.

My own situation: I wasn‘t paying attention to my health. I thought I was just out of breath. I thought I could keep moving. I was working too hard. Work was my life. It is now all gone. All for naught. It all never really mattered.

At a dinner party during that time, someone asked me what I did other than work. There was an embarrassing pause. I did nothing.

What have I learned? I have learned that life unfolds in its own time. I have learned to let things play out as they are meant to do. I have learned to pay attention. I have learned take the time to try to be a better human being. I have learned to slow down. I have learned to breathe.

My favorite quote is from a book I read long ago:

“Generations come and generations go but

the Earth abides.”

That is does, dear reader. I have learned that whatever happens, the messes we make of our lives, and the joys and the sorrows are part of the cycle of life. The secret is in what is learned.

If lessons are ignored, ramifications are sure to follow. But also beware. If abused, Mother Nature always wins whether it is to our bodies, our lives, our Earth.

Mother Nature has no humor.

The Earth Abides.

Thursday, March 18, 2010

An Update

A few months ago I wrote a blog about a friend’s wife who lives with a lot of pain. What makes it more difficult is that they have young children.

Our friend has just announced that he is retiring at the end of the month.

His wife had told me that she wanted him to retire so he could take care of her.

At another funeral earlier this year, we spoke about the conversations I have had with his wife. Apparently, those conversations were quickly forgotten due to a haze of pain pills. After the morphine pump installation failed, he was trying to get her into a facility to detox and help with pain management. All efforts have failed.

He is at the end of his rope.

His future is so uncertain at this most pivotal point in his life.

He is part of Michel’s group of “boys night out.” He wants to get together with them for a small celebration of his retirement at a local English pub for a few drinks, darts and some food.

To add to all this, we just learned that his mother just died. Burial services are Tuesday. Because it was a sudden illness and death, he is a wreck. I just want to wrap my arms around him and tell him it will all work out somehow. It is my hope.

Wednesday, March 17, 2010

More Thoughts

I have been thinking so much about Michael’s mom’s visit last month. We talked about so many things and I learned so much from her.

I learned that her oldest daughter is tough on her. Really critical. Mary collapses when being criticized. Later, talking with Michael about their relationship, he said that it has always been that way as far back as he can remember.

I learned that the twin talks to her about twice a year, never returns her phone calls, and his wife has no relationship with her at all.

I learned that her other daughter, who we visited on our trip, calls maybe once a month. Her daughter, though, has lots of contact with Mary and they have a great relationship.

I learned that the youngest son who lives with her has deep emotional issues. She knows it. She knows the causes.

I learned that Michael is very dear to her. He phones her about every two weeks just to chat. No problems. No whining. Just a nice conversation, which makes her laugh.

I learned that she feels closer to us than anyone in the family.

I was shocked. I had no idea.

Tuesday, March 16, 2010

Life Happens

When Michael’s mom was here, we had such interesting conversations.

I asked her who knows her best?

Who understands her? Who never needs an explanation of her decisions or behavior?

She has a wonderful older sister in Illinois who she talks with at least twice day. Cell phones: the accessory of the geriatric set. Mary said that this sister is the person who truly knows her.

While she was here, we talked a lot. She looked at me at one point and said, “We have known each other a long time.” So true. Almost 40 years.

About two weeks after she left us, she was staying at her brother's house with two of her sisters for a few days. I got a phone call from her late one afternoon.

“I want you to know that you know me better than anyone.”


Monday, March 15, 2010


More of my year outside the box.

Michael’s sister phoned last month to let us know that her son, his wife, his three-year old daughter and their infant son were ready for a rode trip. They were planning to stay with the twin for four days then with us for two days. Overnight. Kids.

I love my three-year old friend Winnie and her mom but there is no way that I could have them as house guests for a few days. After a couple of hours, Winnie’s energy wears me out.

There is no way that I can have that many people in the house

for that period of time.

She also said that he wants us to meet his wife and children – they missed us the last few times we were in LA. She also said that he wants to “show us off” to his wife. Guess he likes us, the house and where we live.

In previous years, we would have declined to see them all together: too many chances of germs and too much for me to deal with physically.

I felt like kicking down a side or two of my box. They are such a happy family and I really wanted to see them.

So, I told Michael’s sister that we would love to have them for an afternoon and lunch. She also told me that his wife is in nursing school and would talk with them about the realities of my illness. They would then understand why they were not going to be able to stay with us.

Now I had to break it to Michael, who is the keeper of making sure I don’t do too much.

I waited until he got settled and had dinner. He began to make the face (whenever he doesn’t like what he is hearing, he makes a face of a crinkled nose and a quick shaking of his head). “Stop. Don’t give me the face, yet!”

I talked him into the visit. For the afternoon. For lunch.

The next morning, Michael suggested that we take them down the Coast to the place we took his mom for the great soup and to show the kids the famous goat farm.”

I won’t even have to cook!

They are due at the end of the month and I am really looking forward to their visit.

Another box crunched.

Sunday, March 14, 2010

Year about Change

Another friend of mine writes a blog, which has a focus of “a year about me.” She is working on all the things that are good for her but had fallen by the wayside– diet, yoga, personal trainer, reading, photography, etc.

Her writings made me look at my year, so far.

I realized that during the past 2.5 months, this year seems to be about making me move outside of my box/comfort zone. It is the most expansive beginning of a year that I have had in a long time. After years of removing ourselves from people and events, we are expanding out of our box.

It began when we accepted a casual dinner invitation with old friends on the spur of the moment. Something I would never have done before as it takes planning to make everything work with my energy issues. It was great to have intelligent adult conversation and I recovered quickly afterwards.

It continued by inviting my mother-in-law to stay with us for the first time in over 10 years. We had a ball. She will be back In May.

Suddenly, I have been reconnecting with a number of former students, friends we have not seen in decades and former school colleagues.

Being asked to join the orchestra and playing for the first time in eight years was another move outside the box. It made me deal with a group of people who don’t know I am sick – something that has been very difficult for me to do. I wear my oxygen to haul the bass in and out of the rehearsal space and during its unpacking. It is embarrassing. I have to pretend that it is somehow normal.

We even joined a book club and Michael doesn’t read books! It begins on Friday evening.

Earlier in the month, I just wanted to do something out of our routine. Michael came home and I proposed a quick trip about two hours away to an Indian Casino. Just for fun. With a glorious full moon to guide us, we left our home around 7:00 at night, had a great road trip to the casino, it was packed so we played two machines for a few minutes, had something to eat then headed home. We got home about 1:00AM, passed out and awoke feeling like we had done something naughty. We giggled. We would have never have done that last year or the years before.

I guess I would say that this seems to be the year to do things outside of my comfort zone. Outside of my box. The boxes are collapsing around me. If this continues, what a year it will be!

Saturday, March 13, 2010


Remember that old song? Tammy Wynette, I think.


During William’s senior year in high school, it became an almost weekly event. Each week, another one of his friend’s parents were separating and/or divorcing. It was over a dozen. In fact, at one point, Michael turned to me and asked, “We’re doing fine, aren’t we? I just want to be sure!”

In every case, it was the woman filing. I began to be aware of a trend. It is the "20-years together" trend. It is a dangerous time for a marriage if the marriage is not solid.

It is the time when children are usually leaving for college or going out on their own.

It is a time when a woman looks at her situation and her husband and decides if she wants to spend the rest of her life with him.

It is the time when she feels that she has fulfilled her obligations, gotten the children into college and how it is her turn.

The women I spoke with had talked to their spouses about their issues for years only to be rebuffed. When they filed for divorce, the husbands suddenly wanted counseling.

I also learned that when a woman has made up her mind to leave, counseling is too late. It is over.

Michael got a hair cut yesterday and his hairdresser told us that she and her husband were getting a divorce. Her youngest is graduating from high school this year and the others are working or going to college.

She is done. She did not want to spend the rest of her life with him. She had tried. They did some counseling. He was shocked she was leaving him.

Tend your relationship.

Friday, March 12, 2010

Lost Memories

I have major memory issues. Dr. K. believes it is because I do too much without supplemental oxygen.

Trying to bring up a name or even some words can be impossible. Funny conversations with my mom can be, “What was that actor’s name? You know, the one who was married to, oh that woman who stared with that actor who was starred in…..” and it continues. Finally, one of us will come up with the names.

It can even be more frustrating.

I am a demon when it comes to paperwork. I am organized. I am skillful. I have the know-how.

I received a notice from my university hospital saying that Medicare stopped all payments and I owed them for all of last year. They do not know that I have a Medicare set-aside. I have to phone them.

Where is the paperwork from the trial and my lawyer?

I looked in my huge file. Nothing. I searched through files in the attic, which included our taxes for the last five years, just in case they got misplaced within those papers. I searched my aunt’s files for the same reason. I searched my huge file again. Nothing.

For two days I walked through the house going through everything I could think of.

Were the papers in the safe deposit box? I was grasping for straws.

I couldn’t sleep. I tossed and turned all night. The covers flew off the bed.

This morning, I thought I would just let my instincts lead me. Without any plan, I wandered into the garage and looked at the huge file again. There was a bag of stuff on top of it, which had a lot of investment stuff in it. On a whim, I began to go though it.

There was everything I needed: The settlement agreement and the Medicare Set-Aside papers. I have absolutely no memory of putting them there.

So, now the hard work begins. I have to call the hospital and deal with Medicare to straighten it all out. At least I have the backup paperwork!

Thursday, March 11, 2010


One of the questions the long-term disability people asked was how much TV I watched a day. When I am home, I have the TV on all day and then into the night.

I watch more TV then I ever have in my life.

Thinking about this, it is because I feel less isolated. I watch a lot of cable news. I watch the stock market. I watch Charlie Rose on PBS when I am home at noon. I watch movies during the day. God help me, I even watch Judge Judy.

I try to never just sit and watch. I will work on the blog or do e-mails or check my beloved web sites or pay bills or fold laundry or make lists or pick up the house or cook dinner. You get the idea.

What I think they were asking is how much time is spent on a couch doing nothing. I rarely just sit.

I rarely do nothing.

It does make me realize that maybe it would be nice to turn it off more often.

Wednesday, March 10, 2010


One of the blog readers contacted me to ask:

Something I've been curious about- when you first were diagnosed and they said you would recover, but they were wrong, why was that? Why didn't you recover, and it became so much more serious of a condition?

Great question and thanks! Hypersensitivity Pneumonitis is usually not a fatal diagnosis. When we were told what I had, we had great hope of a full recovery. It really wasn’t until one of the doctors from the Interstitial Lung Team laid out the reality to me much later. She said that I had come to them so low – DLCO at 7.7 – that there really was not a lot they could do. I was too late, exposed too long and the damage was permanent.

It was a shock. We thought I just needed to take some prednisone, remove myself from the problem and I would be back to normal. So wrong.

Thanks for the question!

Tuesday, March 9, 2010

Disabled and Flying

Michael’s mom Mary has some limitations. She has painful arthritis in her hip and spine so walking for any distance can be a challenge.

When I made reservation with Southwest Airlines for her visit last month, we requested a wheelchair for her. She loves the Southwest Airlines personal.

She told me the following story:

When she arrived at the airport, while others were in line waiting for their baggage to be checked, she had a tip ready in her hand. She waved it at the baggage check-in person and asked for a wheelchair. He stopped and had one within minutes along with a person to push it. That person bypassed the long lines in security to the front of the line.

They then pushed her to the gate where they chatted and waited for the plane together. She was the first to board then tipped the person who had been pushing her. Since she has flown from Las Vegas to her daughter’s house a lot, she has a relationship with many of the personnel who push the wheelchairs. They now greet her by name.

She told us that when she flies home to Las Vegas, she will be met by a person and a wheelchair and will be the first off the plane. They will push her to baggage, get her bag then wheel her out to the curb to catch a cab home. There is usually a long line for regular people waiting for a cab. This is Vegas, after all. There is a special cab line for disabled people where she has never had to wait. She always remembers to tip.

She said the whole process allows her to still travel with her physical limitations. She is very grateful it is available.

Over lunch, she was telling this story to my mom who had given up flying because of the long lines and the long walk to the gate. It made her re-consider the option of traveling once again.

Monday, March 8, 2010

Throwing the Disabled Bomb

I guess with the always-worrisome threat of lawsuits whenever one mentions that they are disabled, business people almost bow and scrape. It is amazing. I can see how people who are disabled begin to expect others to answer to their every whim.

Others abuse it.

The only time I can remember throwing the “disabled bomb” into a situation was just last year. My local medical clinic closed without notice. Bankruptcy. They had 8,000 medical files to distribute. It took months to organize the paperwork and to announce a date to pick up the files, which had been moved from a storage facility to the old medical clinic for the occasion.

I arrived at the appointed time. The line went all the way around the large building and into the next. I asked around to determine how quickly the line was moving. The average wait time was over two hours. It was hot, sunny and there was no place to sit down. As I have mentioned, I have a really hard time in the heat and will begin to sweat and get out of breath when I stand too long.

There was no way I was going to be able to wait in line.

I went to the front of the line to ask a women sitting at a table, “Where is the line for the disabled?”

She looked up at me shocked.

“I am sorry but I can not stand or be in the heat for two hours.”

Her reply, “Well, for $25.00 you could have requested your files to be FedEx-ed to you.”

Now, I had read everything they had sent and nowhere was this option offered.

I took and completed the paperwork and sent it with the check. It was the best $25.00 I have ever spent. I received the files within two weeks, which I gave to my new local doctor.

Now, those disabled people who expect every situation in life to include the disabled option would have filed a lawsuit because they had not taken the disabled into consideration.

Next: Disabled and Flying

Sunday, March 7, 2010

What Instrument are You?

When I was head of the music program, a parent would approach me about which instrument their child should play. I had a whole spiel:

Take them to several local concerts – high schools or local orchestras are just fine– to see which instrument sound they are attracted to. I also warned that at the first couple concerts he child would only notice the drums. As drums do not train the ear, we did not have them at the school. I also suggested listening to classical CD’s in the car to try and discover what instrument the child was most aware of when listening. It is a good starting point.

Try to discover which tone they were attracted to:

  • High - violin, flute
  • Medium – clarinet, saxophone, viola, French horn, cello
  • Low – bassoon, bass, tuba (As a bass player and a person who loves the low tones, I would never have done well on the violin.)

Did they want to blow or use a bow?

After these questions were answered, we would begin the process of choosing a teacher. We suggested one sample lesson with three different teachers. Usually, when they walked out of the sample lesson, it was clear if it was going to be a good fit or not. This process was very successful as we very rarely had children wanting to switch teachers.

Most parents believed that every child should begin with the piano. So not true. The piano uses all ten fingers, two staves of music, and is primarily a solo instrument. The other instruments are usually played as a solo instrument as well as with groups, have one staff, play one note at a time, and requires a strong knowledge of music theory.

In secret, I have noticed certain personally types are attracted to specific instruments: the oboe players are always odd, the basses are naughty, the trumpets are the handsome/cocky ones of the orchestra, and the flutes are, well, flute-like.

As I knew every child, I would often lead a child or parent to an instrument and a sample lesson. Natalie and I would discuss a child and would both come to the same conclusion: “He is such a clarinet!” or “She is so bright and analytical, she has to be a French horn.”

I changed the program from over 65% piano students to over 50% students of other instruments. It created a broader base, richer ensembles and just better for the whole program.

I will never forget meeting new parents at the summer meet-and-greet. One asked me in front of their child how to make him practice the piano more without it being a constant battle.

I turned to the child and asked, “Do you like playing the piano?”

His reply: “I have telling them for years that I want to play the clarinet!”

I turned back to the parents and said, “Maybe we should hear this. I would suspect that there would not be a problem with practice if he played an instrument he liked.”

By September, he was a clarinet student.

Problem solved.

Next: Throwing the Disabled Bomb

Saturday, March 6, 2010


I really miss being with children. I really miss their energy and willingness to learn and grow. I loved watching their faces when a concept became clear. I loved their humor. I loved their honesty.

What I miss most is that I used to be up to date and current because of them: all the latest technology, sites to follow, games to play, music to listen to, movies to see, and the hot TV show.

I knew what the children were into.

Recently, I was watching Adult Swim in the early morning hours. Robot Chicken! A student told me about it years ago. It reminded me that I am no longer current.

I am no longer in the game.

I am sitting on the sidelines now.

Friday, March 5, 2010

More Research

So after I wrote yesterday’s blog, I got a call at 7:40 PM that evening. There had been an emergency and she had been in clinics all day. Hmmmm. Anyway, she wanted to do the interview today at 10:00.

My confidence was not high. How good is the research going to be when they can’t get their act together for an interview?

So, she called at 9:45 this morning, put me on hold for five minutes then did the interview. It was the same type of questions the Workmen’s Comp Insurance lawyer asked me during the depositions. If fact, had the case not been settled, I would not have continued the interview.

She asked about different possible exposures in my workplace, home and neighborhood: down pillows or quilts, animal pets, hobbies, birds, fountains, water leaks, hot tubs, gyms, level of pain, emotional issues, type of bed, level of activity, stairs, pollution, mold.

She asked if I was interested in an additional interview in my home. I asked if it included a home inspection. If so, I will decline.

The research is in correlation with the US National Institute of Environmental Science to try to discover environmental issues as they relate to health issues.

Thursday, March 4, 2010

This is Research?

When I had the lung biopsy, a member of the interstitial lung team requested that any leftover pieces of lung be researched genetically and added to their database while they try to unravel the causes and search for a cure to these diseases. Of course, I agreed to donating whatever they needed.

Later, I was asked to be in another study. It was about how I felt about being ill. Depression was also part of the study. Interesting.

I heard of a research study for IPF where the subjects were given Viagra to see if it helped open everything up in the lungs. I volunteered for that one! Alas, I had the wrong disease.

About two months ago I received a letter from my university hospital asking if I was interested in a research study about interstitial lung disease. I followed the instructions then received another letter, which stated that a person from K*** Hospital Research Group would be phoning to set up a 30-minute phone interview. The university hospital needed my approval to share my file with this research group. I approved it.

So, the call came in last week. Today was the day of the interview right at 4:00PM. I was ready, I was excited and I was so looking forward to it.

When I got back from rehab around noon, there was a message on my phone from the research office at K***. “Please call about your interview today.” I phoned at 11:50. I waited. I phoned again at 2:30. I waited. I waited for the phone interview at 4:00. At 4:10, I phoned again and wished them good luck with their research.

Wednesday, March 3, 2010

Home and Garden

To continue from yesterday, here are the reasons why we do not feel gardening or my house caused the disease.


1. I never planted or worked in the dirt on a weekly or even monthly basis. Yard work consisted of cutting the grass with an electric mower, raking if needed then watering the driveway and walkways down. If trimming was needed, usually twice a year, my husband helped me. No soil involved. I planted a small patch of annuals usually in May and sometime fall plants in November. We have automatic sprinklers and lights.

2. I stopped gardening after the January 2005 biopsy until May 2005 when I returned to cutting the grass and planting my annuals while my husband continued and still continues to do the heavy work.

3. Seasonally, I cut the grass every week in the spring and summer and early fall but only every two to three weeks in the winter.

4. As close as I can remember, I have used a mask and oxygen in the yards most of the time since I got the oxygen at home November 19, 2005.

5. The huge improvement in CT and PFT from Oct 15 tests happened after I continued to garden. It also happened before I used a mask with the oxygen in the garden.

6. Our property was deemed to be sub-standard by the city last year. The front grass area is approximately 10x20. The back yard lawn is 10x12 with a strip of 3x20. The back stone patio is approximately 10x32. The side yards are stone and concrete. The front includes a two-car driveway, connected parking bay and a wide stone walkway to the front door. The yard work is minimal in the normal sense of gardening. Low maintenance.

My Home:

1. I continued to get better at home after the biopsy.

2. I had a huge improvement of Oct 15, 2005 PFT and CT after I left the school in August 2005.

3. I continue to remain stable. I had one downturn in April 2006 due to a virus.

4. We have hardwood floors in the majority of the house with tile in both bathrooms. The only carpets are in the three bedrooms. The carpets are approximately five years old. We do not have any window coverings except for blinds in the two front bedrooms. We have cathedral ceilings in all rooms except the guest rooms, guest bath and kitchen. We have not had window coverings since the 1980s.

So, with the combination of the list of problems with the portable, the environment in my home, the infrequently of my exposure to dirt during planting in the garden and the October 2005 pulmonary function tests, it was a strong agreement among the doctors that the problem was with the portable.

Tuesday, March 2, 2010

Facts that Portable Was Cause

During the Workmen’s Comp lawsuit, the insurance company was trying to claim that I became ill working in my garden or the antigen was in my house. Though they denied that I had HP, (caused by fungus, mold, or organic dust - a "filthy environment"), they were still pressing these claims. At that time, I made a list of reasons why neither was true and that; in fact, I became ill due to the portable.

So today’s blog will include the reasons we felt the portable was the cause of the disease:

1. Beginning early 2002, Natalie brought a Mr. Coffee into work to make tea in the afternoons. We would make the tea, put the bags in the pot and pour it into cups. The next morning, any leftover tea in the pot or cups would have a thick layer of mold covering it.

2. I began to experience memory problems beginning 2002-2003. I had to write down phone calls to be returned for the first time ever. I would also forget full conversations. I also experienced an ongoing cold, low-grade fevers and headaches. I talked to *** at the front desk about them and she told me which headache/fever medications to take.

3. While in the hospital after the biopsy – January 12, 2005 – the resident said that my lungs looked so much better than they had expected. Said to keep doing what I was doing. Before the biopsy, I had not been in the portable for an entire week since December 6, 2005.

4. While recovering for a month at home, my husband noticed that I was breathing so much better at night. No panting and struggling for breath.

5. After three weeks at home, I went into the portable to see my workmates. I stayed three hours. Coughed for the first time since the biopsy on the way to the car. Husband said breathing was back to struggling at night. Was back to the improved breathing after three days at home. It was at that time he told me that he thought the problem was the portable.

6. Returned to school and breathing continued to get worse. Went on high dosages of Prednisone in March of 05. MANIC. Hyper. Doctor wanted me to go on disability at that time but I refused. I had just hired three people and was working to set up a summer Jazz program.

7. Told HR person that the portable was on the short list of possible exposure on March 13, 2005.

8. April 2005, I was told that portables are renown for this disease because of poor air circulation per the resident upon consultation. He asked if I had ever looked at the exterior of the portable. I had not. I discovered that the outside walls were filthy with green and black growth. Dr. K. removed me from the portable on May 11, 2005.

I continued to have to go into the portable because all of my materials were still in there. I also used the other portable during the summer of 2005 to do the scheduling and *** bills and contracts and e-mails when all the other rooms on campus were being used for summer school. I spent the following days on campus doing e-mails but also spent other days doing work: E-mail sent summer of 05: 7/7, 7/21, 7/29, 7/30, 8/1, 8/8, 8/9, 8/10, 8/12, 8/14, 8/16, 8/17, 8/23, 8/24, 8/25 for sure. Don't know after that which was sent from school or home due to *** e-mail to let me know how to sent e-mails from home. That was sent on 8/25.

9.*** Technologies was hired to do mold test in May 2005. Natalie watched while he took at least 12 samples throughout the music office and music room. Shocked when we got the results and reported only 4 tests. The final page of the report retracted the recommendation to fix a moisture problem under the portable. What are the circumstances of this retraction as it was also noted in the OSHA report in Oct 2005? Who talked to him to chance his mind?

10. No maintenance, except carpet cleaning, had been done to the building except we heard people on the roof on occasion or the air conditioning guy came in to reset the system per our complaints. Heard from Operation there was dry rot throughout the walls.

11. Rats. Lots of rats. Several found dead in our office. Traps were in our office. Rats lived under the portable. Rats lived in the ceiling. One hopped down onto the top of the door jam while Natalie was working on evaluations one evening. We even had a rat and cat fight under us during the school day. The cat won. Met with Head of the school on 9.10.04 complaining of the rats and worried about the dried rat urine in the ceiling tiles. Also small mice. Poison control was there and said that the smart rats stop eating the poison. In October 04, someone turned the ceiling tiles at an angle to clean the rat feces and showered the room with the feces. Natalie and I contact operations to clean it up. We wiped our desks off of hundreds of black rat feces. It was not cleaned the next day. I went into janitor closet and got the sweeper and swept it up.

12. Winter 2005 water intrusions into classroom and office. Puddles.

13. The room had the heating and air conditioning vent that blew directly onto my head. OSHA man told me that he wrote them up for 5 years of dirty vents but thought that they had never been cleaned. Almost 20 years. OSHA guy told me they only had the ventilation records for 2003. None for 2004 and 2005.

14. Vent in music office was heating and the cold air return was in the music room. In the mornings when I would arrive first, the janitors per the request of the school would close the door to the office. The room would be extremely hot. I would breath all the junk that had been released through the vents during the night.

15. Both Dr. K. and Dr. C, leading doctors in the field also state that they believe the portable to be at fault.

16. (This is the really important one) I left school in Aug 2005 and had the next PFT and CT Scan on Oct 14, 2005. There was a huge improvement in the CT scan and PFTs when I saw the doctor for the report on Oct 31, 2005. She said that this was the proof that I was now out of the environment that caused my problem. I saw her again in the hallway Oct 18 and again said she was thrilled that we can confirm that the problem was at school and I was now removed from it.

Tomorrow, I will post about the reasons why my gardening and house were not the causes of my disease.

Next: House and Garden