Living Well with a Bad Diagnosis - Lung Disease

Friday, April 30, 2010

Blogs I Read

















Reading other blogs gave me the confidence to begin to believe I was capable of actually writing one. I thought I would share some that I read every day.

Gathering this list, I realized that I am drawn to these blogs because they are people who are trying to create normal lives through adversity. I have learned so much from all of these strong women. I hope you enjoy reading about my heroes. They give me confidence and keep my spirits positive as I head into the world each day.

1. http://lesliekamm.blogspot.com/

Leslie is a mom who received the shocking news that her soldier son was dramatically injured in an attack in Afghanistan on May 31, 2008. What they have been through is overwhelming. As a mom, I ache for her.

2. http://nieniedialogues.blogspot.com/

Nienie is a woman who was in a plane accident with her husband and their friend. The friend died in the crash, her husband made it out of the plane thinking she was right behind him. She was stuck and on fire. She has extensive burns. Her husband rushed back into the plane to rescue her thus burns to his hands and face. She writes about her family and the issues around being a wife and mother of four small children with such debilitating burns. She is very honest. You may have seen her as she recently appeared on Oprah.

3. http://moriahbettencourt.typepad.com/my_weblog/

Moriah is the mother of a son born with CHARGE syndrome and he is at the far end of the spectrum. I met him as a baby and thought, along with the doctors, that he would probably not live long. They said he would not talk or walk or be anything. Ha! He is one amazing kid who is now a teenager. He has even more amazing parents.

Thursday, April 29, 2010

Routine

















I often mention my routine so I thought I would share it with you. A routine was very important to me after I left work as I felt so lost and out of the main stream.

We usually are up around 7:00, Michael makes coffee while I read all my sites on the Internet and the local morning paper on line. After he leaves around 8:00, I make the bed, pick up the house, make a list of things I have to do that day, put on my makeup, do my hair, and get dressed. I fill a large bottle of water and my oxygen tank to take with me.

Currently, I leave the house most days around 9:30 to either the other rehab on M-W-F or to run errands before the rehab class at 12:30 on T-Th.

Mondays around 4:00, Natalie and Winnie often visit if they are well. Wednesdays are orchestra rehearsal nights and Fridays will find us out on the patio in the early evenings talking about our week and listening to music.

Food shopping happens on Mondays after I work out at the other rehab. I shower only twice a week as it takes a lot out of me. Most Saturdays will find me in the gardens.

One of the reasons I started writing the blog, is the horrible time between 2-4 in the afternoon. This is such a dead time for me, especially if I can’t do anything in the garden. I needed something to keep my mind active.

I usually write the blog a few days ahead as I fear that I won’t have anything to publish! Sometimes, when I am in a good groove and have lots to say, I may even write a couple of weeks in advance. That is more rare.

Writing has been so good for my soul, it is a document to be left to my family, and it fulfilled the need for brain activity.

Thank you so much for being part of it.

Wednesday, April 28, 2010

Lovely Fish Shack














Winnie, Natalie and I went to lunch to celebrate Natalie’s birthday. She needed a day away and out of her routine. Me, too!

We went to a fish shack at the harbor, had dairy-free clam chowder, shrimp salad and split a small order of calamari. It was marvelous to dress up, be an adult and spend time talking about girl stuff.

Her baby is due June 1st so she is feeling VERY pregnant and so looking forward to having the baby. Winnie calls him Baby Brother and says that is what she is going to call him. The poor kid will be in his 40's and still be called Baby Brother by Winnie. His real name will be Oliver.

If I was not ill, I would not have had the time or energy to have this lovely friendship, we would not have sat in this fish shack today and enjoyed our time together.

Life is good.

Tuesday, April 27, 2010

Book Club






















We went to our Book Club meeting where the book up for discussion was “The Art of Racing in the Rain” by Garth Stein. It was an excellent book written from a dog’s point of view. His master was a huge Formula 1 racing fan trying to make a living teaching people how to drive race cars.

It is a story about losing his wife to an illness, losing his child through a court action by his former in-laws and then hitting his lowest point in life. All this is related to the reader through the eyes of his best friend, Enzo the dog.

The final two chapters should not be read without a box of tissues near by.

The book was hard for me to read as I often avoid anything to do with a death, let alone a death of a spouse from an illness. It was tough. I cried a lot.

Again, I think the book club is just an excuse to get together to drink lots of wine and chat. We met at the house of the people who moved from Detroit about three years ago which was huge and perfect in every way. The food array was spectacular.

We had a ball. After talking about the book, we voted on which book suggestion to read next. Mine won: Water for Elephants by Sara Gruen. I now have to host the next book club. Oh my. I should have kept my mouth shut! Good thing that I have almost two months to prepare.

Monday, April 26, 2010

Itchy



















We are getting itchy. As the weather gets better and better, we both have wanderlust. We are ready to pack the car and take off but it is just not that easy. When preparing for the last big trip, it took months of planning, pre-paying bills, ordering enough medications and shutting down the house.

Okay, so maybe just a small trip. Quickly.

We are planning a three-day get away to LA after Mary’s visit in May. We won’t tell any of the relatives and stay at our favorite hotel for two nights at the foot of the new Getty Museum.

We haven’t visited the old Getty in Malibu since it re-opened a few years ago. It is on our list of things to do along with a visit to Pink’s. It is a very famous old hot dog stand and worth your stop in LA. Michael is also dreaming about Roscoe’s for fried chicken and waffles. Shame, shame on him!

We also want to go to Pasadena to see the new many-years-in-the-making Chinese garden at the Huntington Library and Norton Simon Museum, which is very rich with Degas and Rodin pieces.

We’ll stroll down Rodeo Drive and sit at the Century Center Shopping Center – outside mall – to watch all the beautiful people walk by. We love to have breakfast in Westwood with all the kids from UCLA, drive down Sunset Boulevard then drive back up Wilshire. We dream of owning a condo in the area so we could visit more often.

It is just a dream.

Sunday, April 25, 2010

ILD Meeting














The university hospital that has treated my Interstitial Lung Disease (ILD) Hypersensitivity Pneumonitis has once a month educational meetings for people living with ILD. It is open to anyone from the area, from any hospital, from any doctor.

The classes began just over a year ago and I was so excited to learn more about the disease. It was not a great experience. So many people wanted to talk about their specific problems or care issues and there was a lot of whining going on. I never went back.

After getting the e-mail regard this month’s meeting, I embraced my goal this year to step out of my routines and expand myself, so I attended. It was great. All the whiners were gone and only 15 people were there. Some were newly diagnosed while others have been part of research groups for years.

We were introduced to Joe Blum (jblum@invacare.com), a representative from Invacare who makes portable oxygen systems. The goal in the industry is to build the lightest, smallest units primarily for travel. People with ILD need what is known as continuous flow instead of on demand. These POS’s are just now coming onto the market.

He brought in the new Invacare Solo 2, which allows continuous flow 1-3 LPM, or Pulse 1-5 LPM. It was the smallest and quietest unit I have seen. It runs about $5,000 but is rentable for trips. Airlines accept theses systems with no extra charges.

I also learned that Virgin and Southwest airlines are the most sensitive to people with oxygen needs and they make the process very easy. Delta, Air Canada and United are the worst. The stories I heard in this meeting were shocking.

It was also a shock to discover that most of the people in the room were flying on trips within the next month. Fly?!? I can’t fly. It was only later that I realized the reason I still can’t fly are my low Pulmonary Function numbers. Duh.

Next, researcher Archer Eller talked to us about the latest trials which were primarily for Idiopathic Pulmonary Fibrosis (IPF). If they can unlock the secret to fibrosis, it may lead to cures or treatments for other ILDs. He also discussed the research process from an idea through Stage IV trials. Very interesting. No wonder it takes years to bring a new drug to market.

The most exciting conversation was around a new drug specifically designed for IPF, which is on schedule to be approved by the FDA on May 5th. It has flown through the process with excellent results with just a couple side effects of stomach issues and rashes. Prior to this drug, the only treatment for IPF was lung transplants and the prognosis was very bad. Most people only live 3 years after diagnosis. Now, with this new drug, they may not need the transplants and live a longer, fuller life. Here is a short blurb from the InterMune web site:

Description

Pirfenidone is an orally active small molecule drug that may inhibit collagen synthesis, down regulate production of multiple cytokines and block fibroblast proliferation and stimulation in response to cytokines. Pirfenidone has demonstrated activity in multiple fibrotic conditions, including those of the lung, kidney and liver.

Investigational Activity

Idiopathic pulmonary fibrosis (IPF) is a chronic, fatal lung disease characterized by inflammation and scarring of the lungs.

Pirfenidone for treatment of patients with IPF has been studied in multiple Phase 2 and three Phase 3 clinical trials. InterMune has completed a 779-patient Phase 3 program in patients with IPF (CAPACITY) and a New Drug Application (NDA) has been accepted for Priority Review by the FDA.

Investigational, not an FDA approved product.

The university hospital had 17 people who participated in this study and one of them was at the meeting. She has been on the drug since 2007 and is doing very well. Having participated in this study, she will be given the drug free of charge for the rest of her life. She called it a miracle drug.

At the first meeting a year ago, I met a nice man with HP who was also at this meeting. We chatted. He is in rehab three days a week and looked really good. He is stable. We compared drugs and numbers and he was thrilled to learn that I settled the Workmen’s Comp lawsuit.

It was a big day for me. It was a 1:00 meeting so I left the house at 11:15, drove 80 miles roundtrip, fought with the parking lot, hiked through the buildings, participated in a 2.5-hour meeting then returned home at 4:30. I was done. I slept like a baby.

I am going to the next meeting in May.

Saturday, April 24, 2010

Betty's Funeral












We went to a funeral for Betty’s, our neighbor who was only 59-years old.

It was so sad.

We learned that she and Roy had married when they were 19 and 21-years old. Their life reminded me so much of ours as we were married at 19 and 20. Roy mentioned that he was going to have to learn to cook and pay the bills.

Michael has written fewer than a dozen checks in 37 years. It was a wake-up call for me. I need to have him to start to do the bookkeeping with me. He doesn’t even know where all the different accounts are located.

It is a testament to a good person and a good life when I looked around the church at one point and it was full. She was a well-loved, fun, family driven woman who will be greatly missed by so many people.

Friday, April 23, 2010

Appalachian Welcome - Not!





















The final story about our trip happened on the fringes of Appalachia in Tennessee. When our son is on tour through the south, the entire 35 members of the tour with its three tour busses and two large semi trucks will pull into a Waffle House Restaurant for breakfast. The pecan waffles and hash browns are to die for.

We followed his recommendation though usually for lunch so I ordered the small grilled chicken wrap with no cheese and a little lettuce, please. Michael, on the other hand, took full advantage of the BLT and of course, the pecan waffles. With butter. And sweet tea.

Well, we’re driving again on a very small back road from Knoxville to Frankfort, Kentucky when we pulled into a Waffle House for lunch. If you have never experienced a Waffle House, they are all different. They can be tiny with just a couple tables while another may be rather large and even though we ordered the same food at several different locations, we never got the same thing twice. In Texas, I even got two grilled chicken wraps. Weird.

So, we pulled into this tiny one in a very rural town in the mountains. There were just a few people there and we sat in a booth near another booth occupied with two couples.

The young waitress –with few teeth – welcomed us and noticed our funny accents. She asked where we were from. When we replied, the entire booth of people clearly from Appalachia turned to look at us. They were not smiling. They clearly were suspicious of us and not happy we were there.

It was the only time during the entire trip – including New Orleans, which can be rather dangerous – that I felt uncomfortable.

I quietly said to Michael, “Eat up.”

We were the waitress’s first Californians and she had lots of questions so she stayed with us throughout our lunch. She also shared with pride that she was a third generation Waffle House employee. She was sweet but there was clearly no warm Appalachian welcome.

Thursday, April 22, 2010

Coffee and Old Men
























Photo of downtown Frankfort, Kentucky.
The hotel was attached to the parking structure on the left.

I promise not to talk too much more about our trip in May but it really was an amazing almost month-long journey on the road through sixteen states.

Years ago coming down the Granite Pass in Wyoming heading to Cody and the east gate of Yellowstone, we came across a very old coffee shop in a tiny town at the bottom of the pass. One waitress, who was also the cook, welcomed us.

The place was full of old men.

We sat at the counter and listened. We learned what issues they were discussing. We learned their politics. We learned that to understand the people where we visited, it was helpful to find where the old men have their morning coffee then engage them in conversation.

We have learned so much by doing this throughout our travels.

On the trip in May, we had planned to visit two of the distilleries on the Bourbon Trail in Kentucky. Note: Never stay in Frankfort, the capitol of Kentucky. There is nothing there except state buildings. We had to drive to the suburbs for dinner.

As there was no coffee shop in the city and we were heading back to one of the distilleries in the middle of horse country, the next morning we stopped at McDonalds for breakfast. That NEVER happens in our real life and REALLY never happens when we are on the road.

The place was full of old men.

We found it! We found the coffee shop where the older people sit and talk about the issues of the day and it was a McDonalds!

A true Kentucky colonel turned to us and asked where we were from. San Francisco? He talked so lovingly about the city before we realized his last visit was during the war! Soon another older gentleman joined him at the table. He introduced him as his son-in-law. Michael started to laugh, as surely this older man is not married to this guy’s daughter. No, really. Son-in-law. He had a booming voice and asked, “Where you from?” then asked, “Where?” So louder, we replied.

The entire place stopped. Everyone turned to look at us. Suddenly, a small very old-fashioned looking woman came scurrying from the other side of the restaurant. She came right up to us and said, “We just got back from a trip to Michigan!”

What do you say to that? We nodded and smiled. Everyone soon returned to their coffee.

Everywhere we traveled, I tried to ask about immigration issues and what were the most pressing issues of the day.

“We are in deep trouble,” the older gentleman said. “What is the problem?” I asked. “We have a state deficit of one million dollars!”

I started to laugh and said, “In California, we could do that in 15 minutes!”

They then invited us to join them at the Jim Beam distillery as a new bridge for larger truck access was being unveiled later that morning. Free food and bourbon samples! We told them we couldn’t join them because we were on our way to Nashville as we had tickets to the Grand Ole Opry that evening.

But, that is a whole other story.

Wednesday, April 21, 2010

Sherman's Funeral Talk












Feeling like I am surrounded by death by attending so many funerals this year, Sherman and I talked yesterday about what he wants for his funeral. He kept saying that he is 85-years old and could go at any minute. I told him not yet and quit being in such a big hurry. He plans to be cremated and buried in the same grave as his wife.

He wants no services.

He says he doesn’t want a lot of people talking about him and saying what a great guy he was. No, he was not interested in any of it at all.

I asked him if I could be at the graveside. He said only if I promised not to say all the normal sappy stuff people say at funerals. I promised that I would tell everyone he was a pain. He said, okay. I was invited.

In our society, people are so uncomfortable talking about death, funerals, and dying. It is rather strange that it has become such an easy conversation for me to have with others.

Tuesday, April 20, 2010

More Rib Stories











We were in the middle of nowhere Alabama on a two lane highway heading north from New Orleans to Chattanooga, Tennessee last May. We were about mid-trip and had already enjoyed the most amazing food.

We tried our first BBQ in Texas with its beef brisket and beef ribs. We had food in New Orleans that made our knees weak because it was so good with flavors we had never tasted before. What a trip! When it was over, we had eaten BBQ in Memphis and Amarillo, too. Note: Amarillo, not so great.

But now, we are still on a two-lane road in the middle of Alabama. “Try to find us a BBQ place for lunch,” Michael said. I had bought an iPhone for the trip and did a search. “There is one several miles off the road.”

We followed the directions, which drew us further and further into the back roads of rural Alabama. Our destination: Dreamland. Really. I’m not kidding. Dreamland BBQ.

It was very rural and we decided it was going to be either very good or very bad.

We walked in. It was dark inside. Very dark. Soon our eyes adjusted and we found our way to picnic tables with rolls of paper towels proudly stacked on each table. A waitress came by and gave us 10 (!) slices of Wonderbread with a bowl of BBQ sauce. We looked around. Everyone one else was dipping their bread and eating it with gusto.

The southern accents were very thick and I had a hard time understanding the waitress. Michael understood her better and was a good translator.

As I had just had the surgery, I could not eat much food throughout the trip. We had become proficient at ordering sample plates, I would take a small bite of everything and Michael would eat the rest. I lost weight on the trip and Michael gained a ton of weight – rare for him.

So, we began our routine of ordering. Michael asked, “What do you recommend?” She pulled back, put her hands on her hips, looked him up and down and said (spelling to try to catch the accent), “Ribs. Dat’s alls we’s gots is ribs!”

Michael replied, “I guess we’re having ribs!” And we did. And they were amazing. And we did have a great conversation with her. As in so many places we visited far from the freeways and interstate highways during this trip, she told us that we were the first people she had ever met from California. She gave us some bibs to take home as souvenirs and wished us a good trip.

The people we met along the way are the memories of the trip that are the most dear to us. We will remember her forever.

Monday, April 19, 2010

Bad/Good Food day




Bad. I was really bad. Since our trip through the South last May, we have searched throughout the Bay Area for good, authentic BBQ. None could be had.

Last week, Michael was taken to lunch to a BBQ place and he came home with tales of pulled pork sandwiches and baked beans. (He didn’t eat much dinner that night!) There also was a rumor of amazing mac and cheese (with bacon!) and great cole slaw. His eyes lit up and he spoke about the food in hushed tones.

Okay, I give in. GET ME SOME OF THAT BBQ.

Saturday, he was over the hill and arrived home with: NO RIBS! They were out. Can you believe that?!? So, we had some pulled pork (no bread), the best beans I have had since Texas and a hot link. It was the best BBQ we have found since returning from our trip in May. It was enough for two nights of dinners and only around $20.00.

As I had worked in the yards all day, I was dirty and tired and the BBQ tasted soooo good. I will do extra work at rehab this morning but will still remember and dream about our BBQ.

Sunday, April 18, 2010

A Day Off

I played hooky from rehab Friday. I paid a penance for it by working in the yards for hours on Saturday.

I did have fun, though. I met my friend from the school. We became friends when both of her children were in the elite music program at the school before she began to volunteer in the classroom. That turned into a job, which turned into a more important job, which turned into her current job. In the process, she and her husband divorced. Her kids are adults now living on the other side of the country.

With her family on the east coast and her children near them, she is considering leaving the area to retire closer to them. It is also stunning to learn about the beautiful houses she could afford after selling her California real estate. It is so tempting for her.

I loved being with her. We talked about her family, her kids, the school and just pure gossip. I get that so rarely these days. We also had amazing Japanese food and I didn’t get home until 4:30!

A big day for me.

Saturday, April 17, 2010

Not Good News

The news is not good. Betty, our wonderful neighbor died. She was still so young, only 59 years old. We just can’t believe it. She died in her sleep which is, thankfully, such an easy death yet so hard for the ones who are left behind. She and Roy had been married for 41 years and were totally nuts about each other. They never had children.

Long after we went back to bed, the coroner arrived along with several of our small town police officers. After everyone left, the police stayed with Roy until some relatives were able to be with him. He said they were amazing, stayed almost three hours and will never forget their kindness.

We spoke with Roy who was feeling very guilty that he had not helped her and felt that he could have “saved” her. The coroner was kind enough to tell him that if he had been sitting right next to her, he could not have revived her. She had PAD so they think she died of a blood clot – like Sherman’s wife.

The neighbors are beginning to rally. We will set up a food tree for Roy after all the relatives leave. When my dad was in ICU for a month before he died, a neighbor made a basket for us, which included a Honey-Baked Ham, bread for sandwiches and side dishes. It saved us. I vowed to remember their thoughtfulness and pass it along to others in need.

The services for Betty are next Friday. This will be the fourth funeral we have attended this year. So sad.

In other news: Michael’s twin’s wife is the half sister to two other women. Go ahead and read that again. Okay, the youngest sister had autism with other issues and was living in a group home. At 3:00AM on Easter Sunday, they were called to the hospital because this woman was complaining of a sore stomach. During surgery, it appeared that she had bled out and she died. She was 52-years old.

Their mother had been diagnosis with mid-to-late stage Alzheimer’s and the disease has been progressing rapidly. The two remaining half-sisters do not get along at all. There is a huge power struggle to control their mother and her money. It is very ugly and it is a fight to the death.

I had met the woman who died twice – the twin’s wedding and bridal shower - and really have no connection to her or her family. Neither of us attended the services. It was still very sad.

Friday, April 16, 2010

Fingers Crossed












We live on a cul-de-sac. The complex is laid out in circles and we are in the middle of it all. With the bedroom door slightly opened last night, we were awakened by the sound of a different loud engine circling from the next street onto ours. We don’t have any noise here, especially at night and it was loud enough to wake us up.

It was 3:15AM; we got out of bed and peaked out the front window. A huge fire truck was parked in front of our house. We watched an as ambulance arrived and were surprised it stopped at the house in the far corner.

When we moved here in 1982, Anne used to live in that house. She was a teeny, tiny older woman with a shock of red hair who drove a huge Cadillac. Her daughter and son-in-law, Betty and Roy, moved in with her after she had an accident and had to give up her car. At her funeral years later, they told stories about her always being remembered sitting on a bar stool with a martini in one hand, a cigarette in the other and wearing her high heels. Perfect visual. I loved her.

Years later, both Betty and Roy developed health issues. Betty had lung and circulation problems while Roy had a heart attack. Both recovered and Roy has continued to work.

Last night made me very nervous.

This morning, it doesn't look good. Their driveway was full of cars. Relatives had been called.

I am hoping for the best.

Thursday, April 15, 2010

The Fading Absent Aunt

I have become obnoxious.

There was some controversy with two of Michael’s sister’s children. Daniel and family came for the visit a few weeks ago. Her daughter, April, had made plans last year to come for a three-day visit and I only found out about it at the last minute. Three days with a two-year old! I would end up in the hospital. She seemed to understand and cancelled her plans.

Michael’s sister helped ease everything but I noticed that April’s feelings were hurt when her brother was able to visit with us if only for a few hours.

I took care of it all with phone calls and e-mails to all concerned and everything is fine. April, her son and mom are planning a visit in late May which will include an afternoon with me at our house then a lunch together two days later without the toddler. Michael's sister said that she will have the twin’s wife baby-sit the 2-year old. I am sure she will be thrilled.

Here comes the obnoxious part: On the phone with Michael’s sister, she said, “Didn’t you know that you are the favorite of all three of my children?”

For the next few hours and the next day or two whenever Michael least expected it, I would say, “Did you know that I am the favorite?” “Hey, I’m the favorite.” “How is it living with the favorite?” There was also a little dance that went along with these oh-so-casual comments.

I know, obnoxious.

It wasn’t until later when I began thinking about my favorite aunt when I was a child. She lived thousands of miles away and outshined the boring aunts we saw most weekends. As it turned out, the boring aunts became less so when we moved closer to the favorite aunt and the idolized favorite aunt faded with reality. I realized that it was the aunt with the least contact who became the favorite. Absence does make the heart grow fonder.

I also realized that is the case with these three kids though they are older – 17, 26 and 33 years old. We may see them once a year and often not for several years. I am the absent aunt who is idolized. When they see more of me, I too with fade with reality.

Wednesday, April 14, 2010

David Update


























Photo of the concert hall at the New England Conservatory of Music, Boston.


I just received an e-mail from the parents of the pianist who was ranked number two in the world when I left the school.

When he decided to leave the United States and study piano privately with a teacher in Austria, David took his GED exams during his second month of high school, passed and took off. He has continued to study piano with this same teacher now at his studio in Germany.

His parents just shared with me that he has been accepted to Harvard, Yale, Columbia, Juilliard, and the New England Conservatory. Did I mention that he is a brilliant mathematician as well as a brilliant musician? He was struggling with having to choose between the two majors the last time we spoke.

Knowing him and knowing each of these programs, I have a clear favorite. For him, the New England Conservatory would be my first choice with its joint program with Harvard. It would give him an extremely fine music education plus an outstanding math education.

We will see which one he chooses.

Tuesday, April 13, 2010

The Veil Lifts






















I had a huge revelation. Major.

It started out innocently enough. My friend in rehab at the other hospital is the one whose significant other had the stomach cancer. He is doing very well, by the way. We were talking about an autobiography she was reading about decoding genes called Life Decoded. It was actually written by an older brother of someone from my class in high school. Interesting, talking about genes.

We then were talking about college. I always felt I hit my stride in college.

I was telling her that I just saw a kindergarten photo of myself when suddenly long-buried feelings returned. I was the smallest in the class. I always had to sit in the front row. I was not only the shortest, I was the lightest in the whole class. I remember the photo being taken. I remember not even being able to open the front door to the school that morning because it was so big and heavy.

I remember not being happy.

As I was born in November, I started kindergarten when I was 4 years old. Yes, it did fall apart a bit when I was in 4th grade – a sign that I did not have the maturation to do the work. It all settled in high school and I really excelled in college.

I am the shortest one in our family.

In elementary school, I was always the smallest and among the youngest in the class. I hated it. I hated when people would pick me up or want to carry me. I was also the youngest in our neighborhood and hated it when I could not keep up with other kids. My yell that I will forever remember was, “Wait for me!!!” I hated being treated differently because I was small. In first grade, I even had my front baby teeth knock out by older kids playing football on our small playground. They didn’t see me.

I just hated being small.

For years I have been overweight though somehow my weight never affected my self-esteem. I just now realized that I liked being heavy – I am not obese just a good 40 pounds heavy. What a revelation. No one can carry me or shove me around or try to make me do something I don’t want to do.

Now that I realize that, it can go. I have power now that I didn’t have as a child. I don’t need it anymore.

So interesting.

Also explains why I have loved wearing high heals my entire adult life! Taller…

The veil lifts and it all becomes clear.

Monday, April 12, 2010

A Different Kind of Sunday




























Friends joined us for lunch. Dear friends who we went to visit a few months ago for the first time in almost 20 years. It was so good to have them to our home.

We served beef filets, roasted potatoes with rosemary, roasted baby tomatoes with basil and biscuits. The dessert was a strawberry pie with oatmeal crust. And whipped cream, of course.

Conversations with friends known from long ago are so very easy. Background information is unnecessary. It just takes a few moments to be brought up to date. We had lovely afternoon talking about deeper issues about love and life.

It was 5:30 before we even noticed.

It was not a normal Sunday. No bills were paid, no work was done around the house, no laundry was washed, no road trips were taken, and no naps in the crook of the couch. So marvelous to continue to get out of our routine and take small baby steps back into our old pre-illness life.

I am tired but happy.

Sunday, April 11, 2010

Jazzy Eye Doctor













I went to the eye doctor last week to check on my glaucoma. The eye drops are working as they have reduced the pressure in both eyes from 26 to 16. Nice.

I love my doctor. He is a very cool guy. When I first meet him, he asked me what I used to do for a living then asked if we taught the kids how to read charts.

We had the appointment, I went home then it hit me. Charts? No one asks me about charts.

The next appointment, we did all the tests then I asked, “Okay, what instrument do you play?” He smiled. How did I know? I told him, “Charts. That was the big clue!”

Turns out he is a jazz pianist taking weekly lessons from someone I knew. He also attends a summer jazz camp with several of our students and I know most of the teachers at the camp.

He was just learning. I kept pushing him to perform in public. You can’t be considered a legitimate musician until you earn money. Sleazy bars are legit.

He kept studying and playing with other musicians. Every appointment I asked if he was legit yet.

Finally, after three years of my nudges and lots of encouragement from his teachers and other artists whom he has begun to perform with, he became legit late last year. In a bar. He got paid $20.00 plus tips. I asked if he framed the $20.00. He had.

I am so proud of him.

Saturday, April 10, 2010

Tax Day

















Property taxes are due on Monday. I mailed ours yesterday. It still hurts.

I was listening to someone of the radio last week talking about a push to repeal Proposition 13 tax structure for homes. It would allow the Californian legislature to increase property taxes to whatever levels they wished. Prop 13’s base is 1% of the value of the house – or the sale price – with only a maximum increase allowed of 1% of the tax bill per year. Even if the base was returned to only 1% of the current value, it would more than double our taxes.

Years ago, we planned to stay in our house because of the tax structure in California. Prior to Prop 13, older people who owned their houses with no mortgages were losing their homes because they could not afford the property taxes. We knew that one day we too would be retired and living on a fixed income so we stayed in this house, which we bought in 1982 and planned for our future.

Some people feel that Prop 13 is not fair. Neighbors are paying different rates depending on how much they paid for their homes. We pay about $3,300 per year while one neighbor pays about $10,000 per year.

Some people don’t realize how many new homes have been built since Prop 13 which has brought in more tax revenue than before Prop 13.

Some people don’t understand that the average turn around for homes in California is three years. The new owners pay the higher rate which again brings in more tax revenue.

If Prop 13 is repealed and our property taxes are doubled or tripled, we to would have to sell or we would lose our house like so many other retired or disabled people.

Prop 13 will allow us to stay in our house until the end.

Friday, April 9, 2010

A Stand-up Guy














I was recently contacted by the person who called OSHA to file a claim against the portable after I left. As a father of a large family, he filed a claim as he was worried about the exposures and could not afford to become ill.

He is healthy. Thank goodness.

He is also no longer at the school. He lost a lot of respect for the administration due to their handling of my illness and they parted ways.

I thanked him for calling OSHA as that was the one thing the Workmen’s Comp lawyers could not attack. OSHA is OSHA. The school was fined for mold, rat feces and water exposure. They couldn’t challenge that fact. It was the “slam-dunk” of my case. I don't think I could have won without it.

It was good to hear that all is well with him and his family.

Thursday, April 8, 2010

Six Months in Review





















Six months ago I began this journey of writing a blog. So much has happened since then:

• The acid reflux is under control and I am breathing and feeling so much better.

• I began to play with an orchestra.

• We had three sets of company.

• Michael is bringing in an income.

• I am losing weight – Halleluiah!

• I have reconnected with some of my students.

• I have reconnected with some of our dear friends.

• We joined a book club!

• We are taking day trips.

• We are beginning to plan our future for the first time since the diagnosis.

All these things were impossible in previous years. Last year at this time, I was recovering from the surgery for acid reflux and I was moving very slowly for many months. Never in my wildest dreams did I even think that I would be making such a list!

Michael keeps saying that this is my year and that I should buy a Lottery ticket.

Wednesday, April 7, 2010

Sherman Update














Very worrisome. Last week, I was told by one of the RN’s who is a neighbor of his that Sherman fell down one night and ended up in the emergency room. Nothing broken, thank goodness, but he really hurt his shoulder.

He came to rehab yesterday with a huge bandage on this elbow. Elbow?!? What really happened is that he was sitting in a chair in his backyard, tried to get up, the chair collapsed and he scraped his arm along some wood as he fell. As an older person with thin skin, he really removed quite a bit of it exposing “fresh meat.” It stings like the dickens. His quote.

I was so relieved to see him at rehab and having a good time. We made him laugh a lot and he said that he was very happy to be back.

Tuesday, April 6, 2010

Just Not the Same



















I often wondered how long my old school could live on its past reputation. It is a different school now since the leaving of the founder and the current head's arrival ten years ago. I don’t think there is anything sinister about that, I just think that when a founder and visionary leaves any school or business, the “suits” take over. The vision gets muddled. This is bound to happen to Apple when Steve Jobs leaves. It will change. The bottom line will begin to dictate product development.

Last night I found a job posting on Craig’s List for my old school. It is for the head of the instrumental program, the after school program and an extended day program all wrapped up into one big job. No overtime. Step right up!

I have heard that the top instrumental program is failing. The whole music program was too powerful, according to the head of the school just before I left. Well, now it is failing and she is trying to get it back. The whole school has changed. There is no longer any classical music taught in the Middle School – no choir, no music classes. There are drums. Loud drums taught in small places. The drum teacher is already deaf and I worry what damage is being done to the children’s ears.

I had the elite program up to 28 students and approximately 60% of the school taking instrumental lessons during the day. There are now 18 students in the program and I don’t know the percentage of total students studying music.

Someone talked to the person who posted the job and mentioned how being head of the instrumental program was so much more than just acting as MC at the evening programs. The “suit” was shocked. There’s more to the job?

That is how far the program has fallen.

The way the classroom program is set up now, when the lower school music teacher leaves, he will take his program with him. He is teaching his music program, not the school's.

It is not the program that was developed by the world-famous musician forty years ago and crafted by the woman who just passed away. It is not the program I inherited and continued to grow and develop.

It is no longer a three-pronged program of specific music education, choral and instrumental study. There is no “Music Program” any longer. There is no spiral of education where one person makes sure all the children are exposed to a consistent wide curriculum throughout their music education.

Very disappointing. Generations of hard work and it is all gone.

It has turned into any other program. That is what they wanted. That is fine except don’t advertise on the school’s web site that you have an excellent music program and that it includes things that no longer exists.

The school is still living on its past reputation but for how long?

Monday, April 5, 2010

Make New Friends...












...but keep the old. One is silver and the other's gold.

Have you ever met someone and instantly liked him or her? A woman I met when I was going to the ILD classes at the university hospital was one such person. We sat across the room from each other but after she spoke, I really liked her. I realized that I had heard about her through our friend whose mom just died. They had worked together.

We talked after that class over a year ago and I had not seen her since.

Well, last week she walked out of the rehab class before ours and was one of the new people sent from my university hospital. She recognized me immediately and we talked like old friends.

She has had a tough road – both hip replacements – and she has young children. She is also struggling with getting on top of the disease and beginning the real work of adjusting her life and believing that she can live well with a bad diagnosis.

I am thrilled that she is at rehab, as I know she will have a better quality of life. I am thrilled that she will probably come into our maintenance class. I am thrilled that we can bring her into our crazy, fun fold.

I am thrilled that I am making a new friend.

Sunday, April 4, 2010

Young Family




Michael’s nephew, wife, 3-year old daughter and 7-month of son were with us for a lovely afternoon last Friday. Kloe, the 3-year old, is very self-sufficient and Jack, the 7-month old, is a very happy, mellow baby. They are sooo lucky.

We gave the E-ticket tour of the house and gardens then headed down the coast for lunch. The weather was warm and the ocean was the deep beautiful blue with impressive waves. It smelled so crisp and clean.

Kloe has clearly been in many restaurants and enchanted all who were near her. We ate the special artichoke soup, crab sandwiches, fresh snapper and chips and I even had cooked oysters! Perfect restaurant for kids and they were impressed that Guy from the Food Network filmed one of the “Diner, Drive-Ins and Dives” shows at this restaurant.

The baby goats at the Harleigh Goat Farm were a huge hit! They were a week old and in a small pen. Kloe and her dad were able to go in and pet the goats. She was so gentle and sweet with the brand new goats. Lots of photos!

We drove back along the coast. I had made a 12” chocolate cake and bought balloons for: Dan’s birthday, Kristina’s acceptance to nursing school, Kloe because she is three-years old and for Baby Jack because, well because he is Jack. The cake was a huge success! Great flavor. We sent the leftovers back to the twin’s house, where they are staying.

I loved getting to know Kristina. She is a very smart, strong woman and they are both excellent parents. They worked seamlessly together as a team throughout the day. It was a pleasure and a joy to spend some time with them.

I fell into bed at 8:00 and slept 11 hours. It will take the next few days to recover. It was so worth it.

Saturday, April 3, 2010

Garden Day
















With Spring springing, the garden needed some attention. With my oxygen in a backpack, the candela in my nose, a mask over my nose and mouth, a large hat, long-sleeved shirt and earphones, I attacked the yards. It’s a war.

I had a blast.

Five hours later, most of the yard was hand trimmed, weeded, cut, tended, talked to, encouraged, and watered.

My body aches but I feel so good.

After a quick shower, I walked the yards barefooted with a tall glass of ice water. The gardener in me noticed what was going to need work but the other side of me noticed how good it all look. So satisfying.

I will sleep like a baby tonight.

Friday, April 2, 2010

Spring into Spring




































I think I am feeling so healthy, it has allowed me to do things that I have not done in years. I also realize that I am noticing all the goodness that life has to offer.

Spring has had a huge impact on me this year. I am so aware of the bulbs blooming, the baby goats at the goat farm, the garden bursting with goodness, the light of the afternoon sun, the soft rains, and the urge to talk to every baby in the grocery store.

Spring = Renewal

I feel so renewed. So fresh. So healthy. It is the first time I have felt so good in at least seven years. I don’t know if it my weight loss, the meds, the exercise, the food, fixing the problem with the acid reflux surgery or maybe a culmination of all the above but I feel like I could conquer the world.

Yes, I still need sleep and take care with energy conservation but I am able to add outings for the first time. It still takes a day to recover where it used to take a week. We even had houseguests for the first time and I did not get sick afterwards.

For the first time in years, I feel that there are no borders around me. I can try to do anything I want to do.

Well, within reason.

Thursday, April 1, 2010

Perfect Day


















A Perfect Day happened. It began with the most beautiful sunrise, a light breeze off the coast and the smell of spring in the air.

I had a luncheon date with a former student who is now in college and his wonderful mother. I was so looking forward to spending time with them.

I hope there are people like these in your life. After spending time with them, I feel aglow. They are just lovely, smart, active, thoughtful, and sweet people.

We went to the city for tea. Formal tea. It was so delicious and we were treated like royalty: little tea sandwiches, fresh fruit, scones, clotted cream, shortbread and - a moment of silence, please – LEMON CURD. Is there anything better in life?

It all ended too soon and I just could not let this perfect day end so I treated myself to a pedicure! My toe nails are now a shocking pink! Spring! I also have perfect eyebrows. Ouch! But, they are now perfect.

Michael is due home within minutes and I think we will probably sit out on the back swing and look at my Spring pink toes and my perfect eyebrows and talk about my perfect day!

Perfect!