Living Well with a Bad Diagnosis - Lung Disease

Tuesday, July 31, 2012

"Can't Avoid It. Can't Stop It"

I read this article yesterday and was touched by their comments about facing an imminent death. The video is below.

HOUSTON -- In the face of a rare, fatal fungus attacking her blood and no cure in sight, a woman celebrated a hospital wedding with the man it took her more than 30 years to find. Sonya O'Connor is dying. A rare fungus is slowly eating away her tissue. "There's only been six other cases and nobody knows what to do," said O'Connor. She's moving to a hospice now and one day soon, she'll have to say goodbye to the one true love of her life. "I made a promise when we got engaged that I wasn't going to let her leave the world without her being my wife," said Patrick O'Connor. He made good on that promise in a wedding ceremony at Methodist Hospital. "Life goes by so fast. In an instant, it really does. One day you're 20 years old and starting your life. Next thing you know, you're 37, you have three children and God's calling you home," said Sonya. "The days are numbered. They are. Can't avoid it, can't stop it. Can't do anything about it," said Patrick. Except make the most of the precious time they have left.

Monday, July 30, 2012

Wells Fargo Saga Continues

The Wells Fargo saga continues. There was a letter from them in Friday's mail saying that they have left two messages on my answering machine and that I have not returned their phone calls. Funny, the messages were to let me know who was handling my case and "if I have any questions, please call her at this number."

No where was there any indication that I was to contact them. I have no questions. I have demands that were made in the letter. 

So, after a cup of coffee, I phoned this morning.

Her comment, "Ah, the escrow account. Our systems show that two letters have been sent out. I have to request copies."

Duh, have you read my letter? Copies of both letters were included. One letter was sent back in February and other just last week. My response included, "The last letter is what drove me off a cliff. There was no mention that this whole debacle was not in anyway our fault. I want a letter stating that for our records for possible future problems. I also want to know why someone on June 18 decided to start an escrow account. There should be a system in place to either check online county tax status and a system to notify the consumer before the account is opened. I would have had a past due on my mortgage if I had not walked the payment into the bank. Surely, I am not the only person this has happened to. I want to be insured that there is now a system in place so this will never happen again."

Her response, "I'll look into it."

If they had just written that they were oh so sorry and promised never to do it again, the saga would have ended. As of this phone call, I see no end in sight.

Sunday, July 29, 2012

Green Cathedral

The last Formula 1 race before the August break is this morning.  My favorite rookie driver Romain Grosjean began the Hungarian race on the first row and seems to be holding his own while I watch and write! We both love Sunday mornings and a race is certainly a bonus.

When I first was declared disabled, Dr. K. told me to stay away from crowds of people because of being immune suppressed. I could catch anything. One thing she did warn against, along with the movie theatres, concerts and plays, was church. She said people go to church unless they are really ill. People are there with colds and the flu and who knows what else. Michael and I met playing music together in a church. We returned when William was in high school and all three of us played in support of the choir. I so loved playing music together as a family.

Going to church was part of our lives.

With my illness, we replaced church with nature. Often, we would take early Sunday morning drives into the mountains or along the coast. It allowed for contemplation. It reminded me of the old song by Carl Hahn, "Green Cathedral."

I know a green cathedral,
A shadowed, forest shrine;
Where leaves in love join hands above
And arch their prayers and mine.

Within its cool depths sacred
The priestly cedar sighs
And the fir and pine lift arms divine
Unto the pure blue sky.

In my dear green cathedral
There is a flowered seat,
The choir loft in branched croft
Where songs of birds hymns sweet.

And I like to dream at evening
When the stars its arches light
That my Lord and God treads its hallowed sod
In the cool calm peace of night;
That my Lord and God treads its hallowed sod
In the cool calm peace of night.

Saturday, July 28, 2012


Our neighbor Ron joined his wife Susan in China yesterday. While they are gone, he put me in charge of their massive vegetable garden. My job is to eat as much of it as possible and maybe water a little! He even designated two specific artichokes for my mom. Today, I shall gather some strawberries, chard, lettuce, squash and mom's artichokes. Thank you!

They have been married for over three years now. Susan met Ron in Shanghai where she had been a high school English teacher. She began teaching as an 18-years old in a providence in the very northeastern section near the Russian boarder. She was a friend of a friend who was to show Ron, a dean at a college, the sites in Shanghai and which local street food was safe for him to eat with his Western immune system. Well, several trips to China followed while they fell in love.

Susan has an adult daughter still in Shanghai and visits once a year. The highlight of this year's trip is a reunion of Susan's first class of students decades ago. Her former village is so remote and small, they will be flying to another small city with an airstrip then a 12 hour train ride where they will be met as celebrities. A hotel room has been arranged and they will be escorted by the village from the train stop. She has not been back home for decades. She and her family left because her father had been assigned to Shanghai, as they were short of doctors at that time. This village is so far north that they are unable to grow rice thus she was raised on a potato-based diet. She still does not eat much rice.

I can't wait to hear Ron's impressions of rural China and all about Susan's reunion. It must be a very emotional visit for her.

Friday, July 27, 2012

Lots of Drama

It was a frustrating morning. After driving in rather heavy traffic to my university hospital in the city yesterday, I expected the normal 10-15 minute wait for my fasting blood tests for liver function and cholesterol.

I arrived at 9:00 and the line was long. Then, I noticed that the line was moving VERY slowly. In fact, only twelve people were called in an hour and there were approximately 60 people waiting. People were beginning to complain and asking to see the supervisor. “So sorry! We are short staffed today!” she announced. It turns out there were only three phlebotomists drawing blood. Three! This is a major medical center. People were missing doctor appointments waiting for the tests, which were the reason for the appointments! One poor man was on supplemental oxygen and was worried about running out of it while waiting, as he had not anticipated this unusually long delay.

While waiting, I ran into Kerri from the Lung Transplant Clinic and we had a marvelous chat. She had lost 90 pounds with my same nutritionist around the same time I lost my 60 pounds last year. She said she had gained 25 pounds back and I told her I am 5 pounds heavy and working on getting it off. I am so fearful of having to face that horrible liquid and protein bar diet again! It was lovely to see her. One good woman.

Finally, after approximately 90-minutes, my number was called. My blood tests took seconds, I grabbed a cup of coffee and ate my string cheese in the car before taking my long past due morning medications.

It was now 10:30 and I was starving. I gobbled an In-and-Out single hamburger wrapped in lettuce, no bun. Perfect. From there, I went to the rehab class only to arrive to a lot of drama. I am trying to stay out of it but it unfolded Tuesday before my eyes.

As I have written in past blogs, the new RN for Pulmonary Rehab is unskilled in managing a group of people. She also makes very inappropriate comments, apologizes then wants a hug. By that time, one does not want to be hugged. One is ANGRY. She speaks to us as if we were children or stupid, I haven’t decided which yet. Everything is said in a punitive tone where as the retired RN used an educational tone. This new RN and I have had our run-ins and Michael has told me to keep my head down and not to give her any information. It has worked and I haven’t had problems with her recently.

And sometimes, she just says inappropriate things. One example was to a nice older man with a lovely Irish lilt who was there for new patient input for Cardiac Rehab. She asked loudly if he was a priest! “Why, no,” he replied. Her response, “You sound like a priest.” He looked stunned.

Well, on Tuesday, as we were cooling down and ready to have our vitals checked before being dismissed, Angie complained about the small parking lot that day. It had been unusually chaotic. Her response? “You are not sick enough to park in that parking lot. You can walk. That is for people who are really sick.”

I was sitting next to Angie when this was said and I watched as her eyes grew dark and the fireworks began.

“I have a serious lung disease. I need transplants. I have a disability placard and have every right to use that parking lot,” she said.

The RN’s response, “But you can walk. Those spaces are for people who can’t walk.”

“No, that parking is for disabled people. I am disabled.” Angie also went into the lecture we learned in this program about how we should not feel badly about using the disability spots as it is all about energy conservation. After a day, all these nuggets of saved energy may allow another activity of daily living. Now, the RN was saying just the opposite from what was taught in her own program.

The RN then suggested that Angie really wasn’t that sick and wanted her to prove how ill she was by doing a 6-minute walk test. Angie’s response was that she was not her doctor and how dare she suggest any test without her doctor’s permission.

As Angie refused to back down, the RN began to back pedal. Angie pounced. At that moment, I excused myself, walked into the empty lobby and said out loud, “Oh, that’s going to get ugly!”

So, today while I was telling Sherman all about the confrontation, in walks Angie, still angry. She told us that she had not slept since Tuesday as she was walking down the hall to speak with the head of all Physical Therapy and all the Rehab Classes. The big boss.

Angie filed a formal complaint.

Afterwards, she, Sherman and I thought it would be wise to give the lovely exercise physiologist a heads up. She is totally professional but we can see that she also struggles with the inappropriate comments the RN makes, though she has to work with her. Sherman was able to motion to her to come out to the lobby to see us. She came and, just as we were telling her what was happening, the RN came out, too! So, she now just left an entire room of pulmonary rehab people alone while working out on machines. She clearly saw something was up. I am sure I am going to get blamed though I am trying to stay out of it.

During the entire class today, it was very uncomfortable. The RN did not look or talk to Angie.

Drama. We’ll see where this goes. Maybe she will be placed in another position. Something that she is better trained to manage.

Thursday, July 26, 2012

Being Alive

Within the hour, I am heading to the city to my university hospital for blood tests. Fasting blood tests for the liver doctor and to check my cholesterol for Dr. M. Afterwards, I have a rehab class and somewhere along the way, I will NEED some coffee and some food.

Yesterday, I took the entire day off to enjoy a baby. Natalie's friend Shannon brought the beautiful Mea to share her with me. We had a great day and moments after she left around 6:00PM, Michael arrived home. What a day!

I was laughing and enjoying our conversation while looking at a beautiful view and eating a fantastic crab salad when I once again tried to take a snap shot of the moment. I am still alive. Against all predictions and odds, I am still here. Functioning. Enjoying being alive.

Wednesday, July 25, 2012

Stories Shared - Tears Shed

I was totally selfish when I began to write this blog. I thought it would be a way to tell the story of what happened to me, document the process of the medical, emotional and legal stuff, and to place it somewhere outside of my mind and body. A dumping ground, so to speak.

It worked. It helped me to put one foot in front of the other and to move forward.

Somewhere along the way, I wondered if anyone was reading it. The blog site did not have stats at that time so I just kept writing in hopes that my experiences would help someone just receiving a bad diagnosis. A fatal diagnosis.

In October of last year, I received a comment on my blog. Having never done it before, I offered to meet via e-mail. That is where our friendship began. This amazing woman, Joanne, was trying to find information and help for her ILD diagnosed husband, Jeff. I was just a little further down the road but I was able to offer my experiences and knowledge learned through the ILD Support Group.

Yesterday, I awakened to find this e-mail below. Within seconds, I was in tears and as you know, dear reader, I am not a crier. We plan to meet on our next road trip. We MUST meet.

Grab a tissue. With Joanne's permission, here is the e-mail:

Are you ok? I noticed in reading your blog today you mentioned supplemental O2. I am praying for you tonight. What can I do for you my friend?

Do you realize it is one year ago that Jeff was on 6 liters of O2? These were the really bad times. He was already living in the RV this time last year, I think, or close to this time. How you have helped me in that past year. I am so grateful that you have been my friend. I don't know what I would have done without your support.

How selfish of me to drag you through my emotional turmoil. I am sorry for that but grateful to have you near me. You have been my candle burning warm and bright when I was totally in the dark.  I hope one day soon we will meet. You would think I'm the one suffering like Jeff has with the way that I stroke these letters.

This past year I've learned a lot about strength from what Jeff has been through. I've watched people survive and actually live. Not to linger in the puddles but to move along in the lives that they were dealt. This time last year, I remember crying loud and hard while I drove the mower around the front yard. No neighbors are especially nearby and, with the mower running loudly, I would sob. Tears would run down my cheeks. I was just beginning to recover from my own surgery. Tired. Scared. I had just returned to work. But I felt I was so physically strong to handle what I did.  God allowed me health just when it was needed. I had to be strong. I know Jeff probably doesn't think I was strong but I learned I had to make a choice to survive Jeff's illness so I could save him. It tore my heart out to watch him struggle to breathe.

I will all my life remember the hours I would spend on the phone with my 89-year old mom late into the darkness of night. She walked me through my fears. It was she who would spend her days in prayer for Jeff. It was she who gave me the holy water that I would rub down Jeff's back every single night and I would pray out loud and ask God to heal my husband's lungs.

I found your blog one late night. I poured over your messages to your followers.  You were alive. You held promise. You were going to an ILD center. I had so little knowledge then. But this was a breadcrumb. How could it be that one could possibly be 50 miles from our home?

The next morning was the darkest. Jeff struggled through that night. He refused to let me call for help. He prepared to let go that day. Called his employer to secure what I would be entitled to and told his parents how he wanted them to stay close to me. I remembered the ILD center in Cincinnati and I called. I was desperate. I told them my husband is ready to die today. It is a miracle that they rearranged the entire next days schedule to bring Jeff in. He was going to see a doctor who saved peoples lives.

Jeff was pale that day we went down to UC. I thought they might admit him. The interview process was long and complete. Many, many tubes of blood. CT scan. PFT with an RT. So many things the other hospital had told us incorrectly. His O2 levels were dangerously low. But by the time he left there that day, he was improving. His O2 sat was finally above 87%, which had been his resting O2 saturation percentage. 77% with exertion. He may have been on 6 liters of oxygen but he was pink. And he could think.
The next weeks and months for Jeff would be full of tests and a bronchoscopy, and a VAT’s surgery that, unfortunately, included a collapsed lung. Chest tubes. The day his VAT's surgery occurred it was 104 degrees outside. We were in a big city away from home. I was so tired while Jeff lay in recovery for eight hours that I went to the parking garage and slept for three hours in the car. Oddly that was my turning point. That strange decision made me feel strong about myself. I was proud of myself. I felt empowered.

A diagnosis from the biopsy was made. NP. A treatment began.

In October Jeff would return to work. It was you who told me to walk him to the door that morning and kiss him goodbye. And I did. What a moment.

So it is a year later and Jeff and I, this Wednesday July 25th, will celebrate our 20th wedding anniversary. We thank God everyday for the time we have been given, for the friends we have made and for the physicians that have given him stability. Life.

Thank you, my friend, for your guidance down this rocky path.

Your sister in life for life

Tuesday, July 24, 2012

Weekly Menu for Prednisone Users

We long-term prednisone users cannot process carbs well. It goes to fat. NUTS! But, one does not have to give up flavor or favorites when eating a low fat/low carb diet.

We are trying some new recipes this week. Michael asked for Lasagna. I can't eat noodles and he is craving Lasagna. I scoured the Internet and found this great recipe except I did not add the spaghetti squash:

I cooked some plain egg noodles and layered everything in an 8x8 pan as directed, baked it and he was a happy boy. There is enough food for three or four more dinners! I took another 8x8 pan and did the same for me except using my wonderful Pasta Slim made by Wildwood. If you haven't tried it, do!

Homemade Fajitas will also be served this week! I bought some skirt steak from my butcher and will be using this recipe:

Finally, the Barefoot Contessa's Tequila Line Chicken is on the weekly dinner menu:

Breakfast is a crustless quiche made with pancetta, chopped cooked asparagus and goat cheese. The basic recipe is here and you can change the protein and veggies for great variety:

Bon Appetit!

Monday, July 23, 2012

Walking Along the Ocean

Sunday morning, I was in my pajamas until 11AM. Michael was gone, I washed and iron our sheets, picked up the house, worked on the computer and just relaxed. The party the evening before had taken its toll. After a very light lunch, I drove a bit north, parked and hit the ped walk along the ocean. It was overcast with a cool breeze as the fog was still hanging around but broke up as I was ending the walk. Good walking weather. I hustled all the way to the harbor. Round trip? Just over 90 minutes. It was a good walk.

Along the way, there were lots of tourists, I watched the surfers and families playing at the beach, people eating at the pier, a farmer's market, pelicans diving for fish in the harbor, kayakers watching the pelicans, walked faster than the traffic at one spot all while using my supplemental oxygen. One area was crowded with huge RVs filled with families staying by the cool ocean instead of their homes in the hot Central Valley. While walking, I passed groups of generations of families. I heard at least four different languages as I walked passed them all. It was a nice reminder that we live in a destination city and that people from all over the world who drive from San Francisco to Los Angeles on Highway 1 pass through our little town.

Afterwards, I was dead. I fought to stay awake for Breaking Bad and was asleep within minutes of its ending. There is a full day ahead.

Sunday, July 22, 2012

Surprise Party with a Road Trip

It was a surprise party and was he ever surprised! Stunned! Our former neighbors, Jay and Nancy have two children. Their daughter Janet married Mike about three years ago and it was his surprise 60th birthday party last evening. They had been celebrating all week and he thought the big family party on Friday night was the finale. Wrong!

He and his sons went to see the new Batman movie together and arrived back at his house expecting a nice, quiet family dinner. When the door opened and we all said, "Surprise," he greeted each person still with his new Coach man-bag in its shopping bag in one hand. He didn't have the presence of mind to put it down. Truly surprised.

Janet had prepared a beautiful display of food from appetizers to dinner and cake. We were happy to see so many friends and family and kids whom we had seen at Jay's 80th birthday party earlier in the year. We love being around these people. The evening flew by.

As we were heading to the party, it was a beautiful 68 degrees so the coast was packed with people. We were a bit worried about getting out of town and over the pass to their house in the Santa Cruz mountains. While looking at a map, I realized we could run the ridge and approach it from the north rather than going over the hill, taking the freeway then another freeway back towards Santa Cruz. As it turned out, the traffic was so horrible that, had we gone that way, we would have been late like so many other people. We saw few cars on the small roads through the mountains, the weather got warmer then just plain hot by the time we got to the party. Thankfully, Janet and Mike have air conditioning as it was close to 100 degrees but it was still very warm in the house. We took turns standing near the vents releasing lovely cool air. Though we were dressed for the heat in shorts and polo shirts, I was sweating from standing too long. Also, if I can't feel air moving in a hot room, I almost panic. Through the years, I have been able to control this feeling but still, it was unsettling. Even in the car driving to the party, I finally asked Michael to close the windows and turn on the air. He kept turning down the fan and I had to remind him that I needed it on my face or I feel like I was suffocating. Even after all these years, he still didn't understand. I could feel the panic rising as the sweat was dripping down my back. Leaving the party hours later, I could hear my breathing. It was very laboured, I believe, due to the heat as it was so much better after we got home to the cooler air.

But the best, the very best, was the ride home. We left the party about 8:15, put the top down on the car, watched the sunset during the entire drive home and wove our way home through the gorgeous redwoods, windy roads, views of the mountains and ocean with fog far below us, views of the entire Bay Area lit in the distance, CD playing and a feeling of total relaxation.

Saturday, July 21, 2012

California Mission Tour

Mom and I had fun with Barbara and four of her day care kids yesterday. We went to one of the California Missions, her city's art museum and had picnic lunches outside in a beautiful courtyard. The children were so good with my mom. They would warn her when they thought she may not see a step or something that might trip her up. Sweet 6-year old Henry insisted on showing her things throughout the Mission museum as he had so much to show her and so much to tell her. She was enchanted.

In the Mission, as it is still a working Catholic church, there was the eternal flame and so many symbols. All my Catholic School training came back to me as we spotted the symbols of the Father, Son and Holy Ghost at the highest peak of the altar and I was able to explain the paintings of the Stations of the Cross, which fascinated the children.

After touring the Mission gift shop, museum then the actual church, we spent quite a bit of time in the very old cemetery. Little Henry would loudly announce, "I counted 58 Jesus Christsess!" when counting crosses on the headstones.

Afterwards, we went to see the exhibit at the art museum. Barbara was a bit nervous as it was an exhibition of glass and ceramics. Breakable! There were three very small rooms and a brilliant woman who challenged the children to decide which piece was their very favorite. This strategy encouraged the children to consider each piece. After we made our choices, she reveled the price tag for their pieces. The children were very impressed.

Michael and I arrived home at the same time around 3:30, sat in the garden then watched the Giant's game. A nice day.

Friday, July 20, 2012

Give Me Some Air, Please

And now for the bad news: My oxygen saturation numbers during the rehab class yesterday were horrible. On the treadmill, I was 84% and just couldn't get it higher. Kelly put me back on 2 liters of oxygen and I still could only get it up to 92%.

Something is going on.

I did talk with my friend Lois non-stop for two hours before the class. That should not be the cause. The air was very heavy yesterday. Maybe the cause but I doubt it. I wonder if I have something cooking in my lungs again, maybe something irritated them during my major gardening last week. That is the most possible cause.

In any event, I am worried.

I am not going to the other rehab this morning so I won't be back in a gym until Monday. The supplemental oxygen will be used once again and I will check my saturation rate throughout the workout. After my levels are checked in the rehab class next Tuesday and, if it is still low, I am going to let Dr. K. know what is happening.

Thursday, July 19, 2012

Two Kids Almost Grown

It was just wonderful. We drove to the Stanford Shopping Center last early evening to buy Michael some new work shoes at Macy's. We wandered through the empty store, found the shoes and thought it was too beautiful to just rush home. We strolled through Tommy Bahama's before having a light dinner at Max's Opera Cafe.

That's when it happened. After the waiter brought us our appetizers, he asked, "Is your name **** and did you work at ***** School?" YES! Well, I am Adam ******. OMG! This was a kid who spent a lot of time in my office. He was the middle kid in his family and very rambunctious. He and his sister played piano and his brother learned violin. I loved their parents as they were middle class, hard working and struggled financially to keep their children in the school.

We hugged. I learned he was on his way to college as a musical theatre major, his brother was doing well at a college in the East and his sister was going to be a senior in high school. I remember her mother being pregnant with her. Where has the time gone?

Adam had great presence on a stage, could sing and dance like a pro and just had that "it" factor. He loved working at Max's as the waiters would take turns throughout the dinner service to sing accompanied by a pianist. We were too early so we miss any singing but my heart sang knowing that the music teacher I hired taught him how to sing well. I know the world will know about him one day.

Then, he asked if we had noticed a blond guy who had been sitting at the next table? I had not been facing that direction but Michael said he noticed that he kept looking at us. Well, he was another kid from the school, Will. He suddenly reappeared and, oh my, he looked the same just a bit taller! I learned that he will be starting MIT next month and still played violin.  Though he is personally worth at least a billion dollars, he was there to borrow Adam's credit card as he had left his stuff at home and almost out of gas. He was the favorite of all the teachers. Polite. Kind. A great student but he had a mom who was very protective. Security was her prime issue, which we all thought was a little extreme. It wasn't until later when his grandfather's business was bombed that I understood that there were people out there who might want to hurt her son. He did escape her by boarding at a private high school and now going far away to college.

It so lifted me to see where these kids were in life, learning their college goals and looking them in their eyes and seeing the little kids I met when they were four-years old.

Wednesday, July 18, 2012


I regrouped yesterday. I hit all my mantras - rehab, water, portions and...well, I didn't take an extra walk. The rehab boys were in good form before the class. We talked and laughed and Dick looked at all the pretty girls. I ate well - breakfast quiche, little hot dogs from TJ's with a bowl of cabbage and a small bowl of lamb and eggplant stew for dinner.

In the morning, I finished editing my letter to the CEO of Wells Fargo bank regarding their predatory practices and got it in the mail. Last Saturday, I received their confirmation letter that the escrow account had been closed but there was no mention in the letter that we were not at fault. There was no apology and I did mention that fact in the letter. We will see if I receive an appropriate response.

The sun came out about 4:00 yesterday for the first time in many days. Michael and I sat in the garden for half an hour before we ate dinner while watching the Giant's game....they won.

It was a day of gathering my strength.

This morning, I am going to the other rehab then a quick visit to mom's before her volunteer work at the library at noon. Later, I am going to work on my formal complaint to the Federal Reserve regarding the Wells Fargo debacle. Another relatively quiet day.

Tuesday, July 17, 2012

Found Money Month

My mom
It's my month for finding money! First, it was the $2500 from the state EDD that I missed back in 2009 and yesterday, it was $50! Ron, our neighbor, is gone for a few days while new hardwood floors are being installed. I pulled out a Williams-Sonoma bag from my bag of bags to store his mail until his return when there it was: a receipt. I read it. It was a $50 gift certificate with this written along the bottom, "This gift card does not expire and no fees are imposed." It, too, was from 2009.

 Also yesterday, Mom and I went on a field trip to Allied Arts, an artisan community in old buildings near Stanford. Proceeds from rents, weddings and the luncheon restaurant are donated to the Stanford Children's hospital. We hadn't been there in over 25 years. Lunch was fantastic. We sat outside around a little fountain and  enjoyed a salad for me and "the best chicken salad sandwich with grapes and apples" for my mom. Oh, and freshly made potato chips! I watched her eat every bite! Remarkable!

At lunch
As it is very close to the Stanford Shopping Center, we thought we would swing by the Williams-Sonoma and buy some coffee mugs with the gift card. They hemmed and hawed. Turning the receipt over, we all discovered together that it was from MACY'S! How embarrassing! Michael needs some sandals and jeans so we will take it to Macy's on Sunday.

So, with two surprises of extra money, I guess I should play the lottery!

Monday, July 16, 2012

Sunday Together

A day together. It was nice. We went over the pass in the morning, I dropped him off to do some chores then headed to the other rehab. The weather was beautiful with highs in the low 70s. There were a surprising number of people working out on a Sunday morning. I did my normal hour routine which felt fantastic though I was still a bit sore from Saturday's gardening. 

Next stop - the butcher. While waiting for my order, a man next to me ordered some lamb for a lamb stew, too! We started to chat and I swear we talked food for twenty minutes. He learned how to cook from his dad and actually had written down the recipes in a little black book. We both were making our lamb stews and his dad was invited for dinner. It will be a surprise to have some of this homemade bowl of goodness. 

Next Saturday, our former neighbors Jay and Nancy will be joining us for a surprise birthday party for their son-in-law. We had been with them in March for Jay's 80th birthday party and had a chat with Mike about bourbons. He knows and loves wine but had not delved into bourbon yet so he had lots of questions for Michael. So, yesterday I bought a bottle of Angel's Envy for his present. It is Kentucky Bourbon. It is also a bit sweeter and easier for a newbie. 

After a quick run to Trader Joe's, we were home in time to watch the Giant's game but no garden time. It was too cold here on the coast! There was sun for moments and it looks to be the same fog and drizzle until the end of the week. Maybe sun on the weekend? I hope so!

Sunday, July 15, 2012

Recipes for the Week for Prednisone Patients

Okay, I'm sore. After working over five hours in the garden yesterday, my legs and back feel it! But, oh how lovely everything looks. I spent a lot of time working in the hidden garden off our bedroom as it needed a lot of hand trimming. There is a small bush that I had not trimmed in a long time and while working with the electric hedge trimmer, I suddenly jumped! There suddenly was our garden snake who had climbing up through the bush to the top and was looking at me! I quietly backed away as he made his way to the lilies next to the bush and from there I think he fled into the far garden bed. Smart! There was no sunshine but I still sweaty all day long. The shower afterwards felt marvelous.

Michael and I sat in the garden after dinner and some movement caught our attention. He thought it was a bird, I thought it moved awfully quickly for a bird. We watched and to our horror, a small mole appeared then darted back to the far garden. Nuts! We have a mole. We have the gopher stakes throughout the gardens that make a noise to drive the gophers to the neighbors but I don't know if they also work on moles!

This morning, I am going over the pass with Michael to work out at the other rehab while he is doing a few things. We are totally out of food so we will swing by the butcher's and Trader Joe's on our way home.

What is our Food for the Week for those of us on prednisone who can't process carbs or sugar? I am going to buy a ham steak from the butcher and use some of it along with leeks in our breakfast quiche. The rest will be cooked with eggs for dinner one or possibly two nights. We are also having a lamb stew made with boneless leg of lamb in 1" cubes with lots of vegetables including eggplant, which cooks down to become the sauce. It is my sneaky way to get vegetables into Michael as he is not a lover of eggplant! Finally, we are having General Tso's Chicken with a side of broccoli. Links to the recipes are below. The recipes make four servings so we have each dinner two nights in a row but the lamb recipe actually serves eight. I usually freeze half of it for another time. Eating leftovers makes my life easier and I am so grateful that Michael really doesn't care. I know a lot of people who refuse to eat leftovers.

If you are on prednisone, remember to eat fresh not processed food, low carb, low fat, lots of non-starchy vegetables and 3-4 ounces of lean protein at each meal. You will feel the difference.

Saturday, July 14, 2012


After a fantastic night's sleep, I awaken to the dense fog of summer on the coastside. Really dense. It is almost raining from fog fallout. My plan for today? I so want and need to work in the garden. My fingers are crossed that it clears a bit. I don't need sunshine, I just need it to not be so drippy wet.

I am looking forward to our trip to Seattle to visit Kimberly and William and to be together for Michael's 60th birthday. A road trip! It is a long 14-hour drive from our home and we drive it all in one day. Thankfully, we are both early morning people so we always leave the house around 5AM, have breakfast three hours later, in Portland by rush hour and Seattle by dinner. I have not been to Seattle in three to four years. It is a city I love. It is a walking city and we are once again staying right downtown. We love to walk to Pike's Market in the early morning hours. We wander through the different neighborhoods. I swear I could live there.

My goal before the trip? I want to lose five pounds between now and September so I am on the light side. I have to recommit to rehab everyday. It has taken a back seat to all the activities with mom. I also realized that I am not drinking my normal quantities of water because I am out running around with her and not close to a bathroom. Food-wise, I have been fine but I do feel that I am eating more as we go to lunch a lot. My choices have been good but it is just different and more food that what I would eat at home. I also would like to push for additional walks in the late afternoon several days a week.

So my mantra for the next few weeks: rehab, water, portions, walks.

Friday, July 13, 2012

Quiet Phase

I am suddenly in a quiet phase. Mom and I are getting our toes nails done today but nothing else is scheduled. Next week is totally free except for rehab. We are thinking of taking a field trip together to a place she used to go to years ago. It is a small compound of old buildings and gardens that are unique shops and a "ladies" restaurant. All the waitress in the restaurant are volunteers from this very wealthy community and monies earned go to charity. I remember one of the shop as selling map. Old maps, different types of maps, framed maps.

I have a feeling this quiet phase won't last for long but I am going to enjoy it while it is here. My garden is calling to me. It is in need of attention tomorrow and the weather should be cool and perfect for working.

Happy Friday the 13th!

Thursday, July 12, 2012

Get Out of Bed

I immediately wished I had let the phone ring through when I heard her voice. It was the wife of the friend of ours who has lupus. I had written about her in the past. She had been spending 23 hours a day in bed, totally drugged to a point of being incoherent, demanded the attention of her children from her bed and fights with them and her husband because they don't give her enough attention. All three teen aged children are exhibiting signs of stress.

She revels in the fact that she is ill. She loves the attention but, most of all, the power. She makes everyone miserable. She calls me on occasion because she looks to me as a mentor of sorts, or so she says.

But this call was different from all the ones from previous years. She sounded less drugged. She asked about my health, which never happened before. She told me she made a decision to get out of bed. Yes, she would still have pain and be exhausted the next day but she realized that the family had moved forward without her. They go places. Her husband has a really nice 1957 Chevy, which he takes to any car show or group ride within a day's drive. He is recently retired and tries to get out of the house everyday. The kids often join him. They were leaving her behind.

I told her my goal was to make my death the easiest I can for my husband and son. I won't lay in bed until I moment can't stand or sit anymore. I won't whine or complain or be angry because there really is no point in it all. I want them to remember me as being positive until the very end.

She said that was her goal as well.

We'll see. I hope she has turned a page but she is part of a long book with lots of damage along the way. I fear that there has been too much damage to be repaired.

Wednesday, July 11, 2012

Birthday Month

It's Mary's birthday next week. She is going to be 79-years old. Las Vegas has been breaking heat records and she is really suffering. I am going to phone her within minutes to ask what she wants for her birthday but we always add a few more things. Michael wants to send some warm weather clothing for her trip next month to a family reunion in Decauter, Illinois. He has such great taste that I want him to go with me to help pick something out for his mom.

Michael spoke with William yesterday who was in Tulsa on his way to a concert at the Taste of Chicago festival tomorrow. Hopefully, the weather will be in the 80s instead of 100s! He also confirmed that we are going to be celebrating Michael's 60th birthday in Seattle with him and Kimberly. A road trip! Let the preparations begin!

My niece's birthday is also next week. And our former neighbor Nancy is celebrating another birthday as well. I think July wins the month of most birthdays for our family!

But, the one we are most looking forward to is for Nancy and Jay's son-in-law's surprise 60th birthday party in ten days. When we moved next door to them in 1982, their daughter Janet was still in high school! We have know them forever and continued our relationship with the entire family even after they moved away into retirement. I love their family and always enjoy being part of their celebrations.

Lots of cake. Lots of candles this month. Lots of wishes.

Tuesday, July 10, 2012

Busy Days

The ILD Support Group meeting is today. I don't think I am going to attend. There will be no speaker but instead, a "check-in" with members of the group. Interesting but just not worth missing my rehab class since I have missed so many because of mom's doctors appointments.

But, if Susan from the ILD Group phones this morning and decides to attend, I will drop all plans to meet her for lunch and the meeting. She is my priority today.

The 1966 Mustang convertible that Michael and William have been building together from the frame up these past four years, is leaving our garage today. Everything is finished except brakes and the paint job. It is being towed for a final engine check-up and new brakes. Later this year when William has a couple of weeks, Michael wants him to actually put the paint on the car with him. The upside? My car has the garage for a few weeks!

Later today, I am going to make some baklava for the Jim's sons who were watching when Michael took a big bit of some at Nick's restaurant's 85th anniversary party and announced that mine was better. That intrigued them. We also saw them at the wedding on Saturday and they reminded me that I promised to make them a batch. Michael will deliver it to them tomorrow morning.

Also tomorrow morning, my favorite children are coming for a visit for a few hours. Winnie and Oliver are bringing mom Natalie with them for some cookie making and lunch and maybe a walk. We haven't seen each other for almost two weeks so this will be a fun visit.

I think I am struggling at the edges of my stamina -  pushing myself vs overdoing it. The past few days have been a challenge and I don't feel that I am getting enough sleep or even down time. Later this week, things should slow down and we have no plans, other than the yards, on the weekend. The garden is growing so rapidly that my fingers are itching to get out and trim it all back!

Monday, July 9, 2012

Fun Sunday - Just the Two of Us

Michael and I wandered down to the harbor yesterday to buy some fresh-caught salmon. Since it was packed on ice, we decided to buy some lunch at the best little place on the coast. It was packed so we ordered it to go: calamari for me and creamless clam chowder and a HUGE crab sandwich for Michael. We walked along the harbor and found a picnic table overlooking the boats where we watched the pelicans diving for food. We even saw a harbor seal's nose peaking through the surface of the water.

Much later and after a two-hour nap, Michael cooked the salmon on the grill with lemon, scallions, salt, pepper and a bit of mayonnaise. It was perfectly cooked and the leftovers will last for a couple of days. I served it with shredded cabbage lightly toss with a low-fat Kraft Asian dressing. Perfect.

Getting caught up with "Extreme Weight Loss" on TV last night, I checked the clock when it was over and it was 11:00! Oh my! And I have a very busy day and week ahead! It was so interesting to watch the progress during an entire year of a young woman who lost almost half of her body weight during that time. As is often true, it was more about dealing with issues other than food. She did it. She began at 323 pounds on her 20th birthday and weighed 167 at her 21st birthday party in Las Vegas. Walmart awarded her $50,000, which allowed her to start a new life away from her family which was a good thing.

So, I begin today a bit tired. Mom has a dentist appointment here in town so I have to shuttle her over the hill this morning. While she is seeing the dentist, I am going to run to Safeway, the bank and get her car washed. We'll have some fresh fish tacos at a local dive then head back over the hill to the butcher and Trader Joe's. It is going to be a long day.

Sunday, July 8, 2012


I didn't expect to have fun at a wedding where we knew just one other person but we had a ball. It turned out we knew several people and were seated at a great table. The conversation flowed and connections were made.

Not knowing hardly anyone allowed me time to step back and look around the room with a different eye. We sat behind a family at the church; grandparents, parents, siblings and grandchildren. Most weddings ban children but I think they are vital to witness the tradition of a wedding. Family. The children were adorable and wide-eyed. During the reception, I think I counted four babies and just a lot of kids in cute outfits having fun with each other. Then the dancing began and in the center of melee was an 11-year old boy dancing his pants off. He was dancing with joy. He loved being the center of attention. It was simply marvelous to watch.

Over at another table, we noticed several older gentlemen. Their histories and stories were etched on their faces. Fascinating gentlemen.

It seemed that as I looked about the room, each table had its own story. Friends enjoying each other. Family members sitting together laughing and talking.

It was fun watching it all. It was a nice group of people who were there to witness the beginning of the married life of two people. Two people who will life happily every after.

Saturday, July 7, 2012


Unusual weekend for us. We are going to a wedding today. I have met the bride once and the groom twice. Michael knows both well through his friend Jim. Out comes the black Calvin Klein dress and Michael's new shirt and tie once again. It should be perfect weather and the reception is very close to my mom's home, so not far from us.

As the wedding is not until later this afternoon, I am pushing Michael to join me for a nice long walk along the ocean. Not sure that is going to happen. What I am going to do is mail my letter to Social Security Disability regarding the $2500 I received to close my state disability account.

Sunday morning will once again find us watching the Formula 1 race, this time of Great Britain. My rookie driver for Lotus, Romain Grosjean lead the practice round yesterday, today is the qualifying rounds and tomorrow the race.

I am tired from several late night changes to my routine so I will try to take it easy at the wedding today. The plan is to do nothing on Sunday, maybe a walk but otherwise, nothing. There is a very busy week ahead with lots of doctors and driving so I need to take the time to recover.

My thoughts are with all my countrymen and women who are suffering with long-term power outages and stifling, seemingly endless heat. I wish I could send a bit of coastal fog your way.

Friday, July 6, 2012

A Rare Weeknight Out

It was a party. The music was great. The food was amazing. It was a private party in celebration of the 85th anniversary of a restaurant own by a friend. His entire family was there to mark this moment including his parents who opened the restaurant, his sister and their families. Also present were state senators, congressmen, county supervisors, the local Chamber of Commerce and television cameras. It was a big deal.

We found a spot safely away from the crowds. The music was well played by older people - at least our age! HA! Michael said it looked like the commercial  where the grandfather takes the guitar from his granddaughter. But, I have to tell you, they were good. Then, a blues guy took over and got the place rockin'! 

My hero Michael battled the lines for hearty appetizers and we ate well including fresh Dungeness crab on bread, crab cakes, large shrimp, scallops wrapped in bacon, lamb chops, salmon rolls, spanakopita, dolmades, potato half stuffed with sour cream, beef wellington, asparagus wrapped in phyllo and goat cheese, baklava and chocolate covered strawberries. I ate all the seafood! And a lamb chop. It was wonderful.

Years ago, we knew a crazy family who owned a tire store in this town. When we first saw the TV show American Chopper, Michael said it reminded him of this family and this business. Parents and sons and daughters all fighting and working together. Last night, the son who really was the primary worker now owns it and was at the party as part of the Chamber of Commence presentation. Michael couldn't believe it was him. It has been well over 30 years since he had seen him last. Well, he immediately recognized Michael and we must have talked for over an hour. We never mentioned that I am sick. It seems that it was not the time or place. Just before we left, we ran into other friends who are also going to the wedding on Saturday. Another party.

This restaurant was RIGHT on the ocean. Our car got wet from the spray as there was nothing between it and the water other than a few rocks. We watched the sun set over the ocean then drove home down the coast. Nice night.

Thursday, July 5, 2012

After the 4th Comes the 5th!

Did you see the full moon last night? Wasn't it glorious? We peered out of mom's windows at the fireworks last night after Michael BBQed some chicken and strips of zucchini. Delightful!

It was rather odd to have a holiday mid-week. Clearly, many people have taken the time off before or after the 4th. Tonight, we have been invited to an 85th anniversary party of a restaurant along the ocean north of us. It will be a private party thrown by the owner and this man knows how to throw a party! I anticipate tables heavily laden with food including amazingly fresh seafood. That is what I will eat: seafood and vegetables! I would also bet that Michael will have a couple of cocktails as "After the 4th comes the 5th! "HA!

After rehab this morning, Mom and I are playing today and planning another field trip. She also wants to connect with Barbara and her day care kids as she has totally fallen in love with the kids. They have field trips almost everyday during the summer.

An update: I did received notification that I will be receiving the $2500 lien paid by the Worker's Comp Insurance company into my state disability account. Since I will never return to work, they will be sending that amount to me to close my account. It is coming under separate cover in the form of a gift card.

Wednesday, July 4, 2012

Fireworks at Wells Fargo

Before my tales about Wells Fargo yesterday, I wish to offer a Happy 4th of July to all my US readers. I hope lots of family and parades and holiday food and fireworks are on your agenda today.

Yesterday’s blog dealt with my battle with Wells Fargo Bank. As planned, I drove to Morgan Stanley to pick up a copy of my tax check then drove to the county offices and arrived there at 8:35AM. The office was to open at 9:00AM. I waited.

The woman at the desk was lovely, listened to my story then copied out a letter that explained that all my taxes were current.

From there, I drove near my mom’s house to the former Wachovia bank, which is now Wells Fargo. I was one angry woman. I asked this young pregnant woman to speak with a banker. She asked me to sit down. She was a banker. I calmed down. I asked when she was due and what she was having. Her answer – four weeks and another boy for which she was thrilled. How can I be angry with her?

I explained my problem. She got it. It took several phone calls to reach the proper person – Fred in San Antonio. He explained to the banker that it was not the April tax payment that was in question but the previous one. The December payment.

Background – I made a payment due December 10th. I wrote out the check and put it in the mail. We had Christmas then went to Palm Springs for a week after the first of the year. When we got home, there was a notice in the mail from the county that I had written the check amount wrong by $700. I transposed numbers. There was a grace period, which we missed by being out of town. So, I immediately wrote the correct amount and added the penalty. Paid. Done. About a month later, I received a notice from the county that I was paid in full. Around the same time, I received a letter from Wells Fargo demanding proof that the taxes had been paid. I immediately sent it and received a letter from them dated February 5th acknowledging the proof of payment.

What Fred in San Antonio told the banker was that I had never made the December payment and that was the reason for the escrow account. I pulled the Wells Fargo acknowledgement letter out of my purse and the lovely young banker read the letter to him. He put her on hold. For a while. Finally, he explained that he took the problem to his boss who had just put in the order to stopped the escrow account and referred to this whole mess as a processing problem. Oops. Sorry.

Thank goodness I had brought that letter with me.

I asked to speak to Fred to find out why the escrow account was opened on June 18th and I was never notified. He was soooo sorry.

I also asked Fred about the additional .01 charged to my payment. He said that is what they do when they open an escrow account before they figure out the exact amount of taxes to be added to the payment. No notice. No nothing. Oh, and he also said that had I mailed Monday’s payment in, it would have been refused because of that .01 and I would be past due right now. And a ding on my credit.

Predatory practices. Dirty business.

He gave me a phone number, the name of his boss and told me to phone in 3-5 days to be sure the escrow account is closed. After it is confirmed, I will be writing to the CEO of Wells Fargo then we will file a complaint with the Federal Reserve.

Tuesday, July 3, 2012

At War With Wells Fargo

I am at war today. It is a war against Well Fargo. I HATE them. They bought our original World Saving Mortgage from Wachovia Bank. I had a huge run-in with them in the 90s and never trusted them. Because of that, I have walked our mortgage payments into the old Wachovia Bank branch every month for over a year.

Yesterday, I tried to make my payment and the sweet teller said, "You are .01 off!" Suddenly, the amount was different from even the monthly statement by .01. Weird? I had to change the check as the computer would not accept my normal amount.

Why fight .01? Why question it?

I smelled a rat and I was right.

The teller advised me to call the 800 number on the top of the statement. When I got home after my hair cut, I did just that. Guess what? No humans were available in the prompts. Just recorded data. Frustrating. So at 3:30, I drove into town to the local branch.

I was clearly very angry. They assigned a banker to me who used magic phone numbers to talk with the proper person. She told me that they opened an escrow account on June 18th because we had not paid our property taxes in April.

I was stunned. We paid them from our Mongan Stanley account. We had not received notification from the county that they had not received our taxes. We had not received notification from Wells Fargo that they were opening this escrow account.

What really angered me was when I asked about the .01 difference in my bill. "That is because we opened up an escrow account." I asked, "So, had I just mail the check in with the statement amount (less .01), would you have rejected it?" The answer was, "Yes" and we would have now had a late house payment on our credit report.

This type of business practice was why I never trusted Wells Fargo. That is REALLY dirty. No warning. No notice that the amount had changed.

Where do we go now? I am leaving within the hour to pick up a copy of my cancelled check from Morgan Stanley - about 40 minutes away - then to the county to talk with the tax collector to make sure they show that we are paid. I will ask for a stamp or something to prove that. Then, I will be going to Wells Fargo and ask why they decided to open this escrow account, ask for a copy of any notification from the county that our taxes were not paid, leave the proof with them and then just one more thing - we will be filing a complaint with the Federal Reserve.

Monday, July 2, 2012

Not Sleeping

I have been having sleeping problems. I am exercising. I am eating well. I just don't understand it.

Around 8:00PM, the yawning begins. I fall into bed and sleep until around midnight. I flip around the channels, listen to Michael breathe, try to focus on the drone of the electric fan, too hot, too cold and I end up just lying there. Waiting. Waiting to sleep.

This lasted three hours last night. The average is two to three hours. After a couple of night of this, I do take a melatonin to insure sleep but I still tend to awaken for a bit during the night.

Michael said that he has noticed that I am in a manic phase thanks to the prednisone. He said that I can't just sit still. I must be doing something or moving my body. I reflected back on the weekend and realized that he was right. While sitting, I either had a book or a computer in my hands. I also balanced the checkbook, wrote out a lot of checks, went food shopping, organized a cabinet in the kitchen, made dinner, picked up the house, made get the idea.

Now my job is to be aware that I am manic. I can easily drive people nuts by talking too much or too loudly or too fast or being frustrated that everyone driving in cars or with me are not moving fast enough. I need to remind myself to slow down. I need to relax my mind and body. So hard for me to do.

I am going to the other rehab this morning after a stop at the bank then will visit my mom after working out. I have lots of errands to run and will haul mom with me, we'll have a bit of lunch then I will have my hair cut and colored in anticipation of a wedding on Saturday. Eyebrow waxing tomorrow! Oh joy!

Sunday, July 1, 2012

It's in the Mail

Friday morning, I showed up at the State's Employment Development Department just before 9AM. The parking lot was filled as it was also a job training center. I told the women at the desk that I was looking for Peter - I had been told that I needed his expert advice. I was directed to room 38D.

To recap - I had received a notification from SSI Disability that they had overpaid me, which I thought was tied to my Workers' Comp award. I was wrong. I was paid over the 80% max from SSI and WC. But, it made me go back to the 2009 WC Award letter from my lawyer which stated:
"The settlement also provides for the Employment Development Department to accept $2500 payable by the defendant as payment in full on the lien. It may be possible for you to withdraw this amount, upon appropriate medical certification. You should reapply for said benefits after you receive the settlement funds."

I had missed this. I wondered if these funds were still available. Thus, Friday's visit to the EDD Office.

Room 38D was filled with people and computers and silence. A woman asked what I wanted, I showed her my paragraph and she told me Peter was not in. Another woman around my age came over to rescue me. After reading the paragraph, she said, "Follow me." We walked into another room also filled with people working on computer to an office carved into a corner. "Sit down!" I sat at her desk. She took a piece of piece out of her pocket and dialed the EDD main office. No prompts. No waiting for next available person. She handed the phone to me and left. I spoke with that man who told me that I needed to talk with the State Disability people and gave me the 800 number.

I walked back through all the computer to find the woman to thank her. I told her that I had an 800 number and she said, "We don't need 800 numbers. Follow me!" Back we went to her office. From her pocket came the magic phone number, she asked if she was speaking with Chris and introduced me before handing the phone to me.

Chris asked many questions to which I suspected he already had the answers. Everything from where I last worked, date of my last day working, who was my doctor, if I had earned any income since 2005. I finally realized that he was investigating me to see if I was telling the truth or not. When he asked what I earned through SSI Disability, he started asking other questions until I realized what he was looking for: How can I live on $1,204 a month? I finally got it and said, "I have a husband."

He told me that the money was being discharged. I didn't get it. I asked what that meant. He replied, "Do you want it in a check or gift card?"

The money was being sent to me. That was it. No forms to fill out. No meeting to attend. No long lines to wait in. Done. In the mail.

Chris did warn me that SSI Disability will probably deduct this amount from my SSI Disability monthly checks but since it was part of the WC lawsuit, it may not. He said that there will be a letter with the check and that SSI Disability will want to have a copy of it. I will phone them when I receive it.

I hung up the phone rather shocked that it was so simple, walked back through the people and computers to find my goddess once again. She was talking with a nice looking young guy. I apologized for interrupting and said, "I got it! $2500! I can't believe it!" The young guy fist bumped me and she said, "Go shopping!"

I do want to state right here right now that everyone I have dealt with in person at the Social Security Office and here at the State Employment Department have been amazing humans. They are doing a tough job with kindness and grace. Thank you.