Living Well with a Bad Diagnosis - Lung Disease

Friday, July 31, 2015

Still Alive

It always amazes me when I check my blog stats the first thing in the morning, that I have already had hundreds of hits. I smile. Someone has just found me and is reading past blogs for information. Today, when checking the audience button, it listed Russia and France with huge numbers. Passing along my experiences dealing with this bad diagnosis was the reason for this blog. I feel like I am doing some good when the numbers are so high. People are getting information.

I am in such a healthy phase right now that I worry I am boring but that in itself is a headline! Still alive, still active and still living life to its fullest after living with this disease since 2002 is proof that diet, exercise and good medical care work together for a longer and better quality of life.

Today, I am so looking forward to seeing a dear friend. A former parent from the school where I got sick. A woman who has stuck with me and worried about me and celebrated with me all these years. There were times when our lunches were the only positive things in my life. Worries about the lawsuits and money and dying were at the forefront of life during those times. In this phase, it is just wonderful to feel healthy and happy as we meet this morning.

So read on France and Russia and all the people in other countries who have found me. I so hope any information you find is useful and it gives you hope.

Thursday, July 30, 2015


The head of the pulmonary rehab program phoned yesterday after she heard about my long fall from a ladder last Saturday. She told me to stay home today and maybe just go for a walk. So, after running to Costco over the pass this morning while the housekeepers work their magic, I plan to take a nice walk on the pier and along the lagoon at the harbor.

Project #2 took another step forward yesterday with a telephone interview and a confirmation that it will happen. That was nice.

This along with Project #1 is keeping me almost on a high and I am even having problems sleeping. There is so much for my little brain to process. I laughed when I read my horoscope this morning:

You believe you understand how a domestic situation is going to play out, especially if you are in the process of reevaluating your long-term goals. However, it's nearly impossible to know to make a decision now because your future still seems like a fantasy. There's little you can do to fill in the elusive details of your upcoming adventures. Instead of taking concrete action, give yourself permission to dream without attempting to make anything real yet.

Hit it on the head. That is exactly how I am feeling. I guess I will be dreaming of all the possibilities while on my walk.

Wednesday, July 29, 2015

Two Giant Steps

I love it when everything flows easily. Yesterday was one of those days. I drove over the pass to gather food for the week then stopped by Safeway on the way home. Just as I put everything away and settled in to check my emails, the phone rang. I have been working on two different huge projects that I can't talk about and it was a major phone. Had I gone shopping later, I would have missed it. It was intense and I needed to put together some information, so I worked until 12:30 when I forced myself to stop to make lunch. Then, an urgent email arrived needing me to confirm an 11:00 conference call today with the second huge project. It seemed to come all at once. Juggling projects!

I phoned Michael. I phoned my brother. Later, I phoned my sister.

A message came in from Natalie at 1:30. She and the kids were having a late lunch in town and wanted to know if I could join them. I jumped in the car and had a diet root beer while they ate before Winnie's orthodontist appointment. It was great to see them.

By the time Michael got home from work, I was hyper and feeling like I had taken huge strides forward.

He is playing hooky from work today. We have to pick up the car at the mechanic's first thing this morning and I will get back for the 11:00 conference call. I need to be calm and centered and mentally prepared to speak to a group of six professionals.

We'll see how today flows!

Tuesday, July 28, 2015

Avoiding Heat

Lots of driving yesterday. Before her eye doctor appointment, Mom and I had a marvelous lunch featuring a hilarious waiter. I got the guy to actually giggle! Love that! We arrived to the eye clinic early, the doctor took us early and we were in the car on the way home at the actual time of our appointment.

My mom and my niece went to lunch together on Saturday. Two generations without the connecting generation present. Mom loved being about to talk with her granddaughter. Just the two of them. Shelley drove down to the Bay Area, which usually takes about two hours but there were problems. Four hous later, she was sitting in mom's most favorite restaurant having a glass of wine! Mom was so stunned by her beauty, both inside and out. Shelley was also so well spoken and writes for a living. Smart. Well paid. In love.

She and Russ are going to spend a weekend with us next month. It is time to send some of my aunt's furniture home with her: Leather-topped round table, entry table with a huge mirror, bed tables. She loves anything from the 1940s.

It is going to be hot today and tomorrow. I can feel the heaviness in my chest. Thankfully, the coastside will only be in the high 70s but I need to go over the pass to buy groceries. The plan is to go first thing this morning so I am home and walking along the ocean during the afternoon heat.

I am sore but I finally have strength back in my left arm and hand. My knee is no longer swollen but a delightful shades of purple. But, my tailbone is better but still so sore. Daily goal: Don't fall down!

Monday, July 27, 2015

Not as Sore

I am not quite as sore as yesterday but I need to try to not fall again! My tailbone is tender and it is a challenge to sit. The decision has been made to not go to rehab tomorrow but to try to walk along the ocean. My body needs to heal.

Mom has her shot in the eye today so I have to drive her to the appointment. There is only one problem: one car needing an alternator was delivered to the shop yesterday and the other car has a nice, fat screw in the tire and losing about twenty pounds of air each night. Michael filled it up this morning so I have to drive it to mom's, drive her car for the day then use her portable tire compressor before trying to get home late this afternoon. Then, Michael and I will pick up the one car this evening and leave the other for a new tire.

We have been in a drought for a few years so it was good news that it appears it is going to be a VERY wet winter. I can't imagine even hearing the rains on the roof again as it has been so long since we had a good storm. I worry about the big trees and large plants in the yard. I want to whisper to them to just hang on a couple more months as relief is coming.

Monday. It is a rather quiet week ahead until Friday. I am meeting a dear friend for breakfast then eight friends from Michael's work are meeting at the number one restaurant in SF. The one friend missed our last outing there so this is a make-up, so to speak. As they are talking about going out after dinner, I think it is going to be well into Saturday morning before we get home. They are all decades younger than the two of us and can handle a late night!

Sunday, July 26, 2015

Falling Down, Part 2

Lesson learned. I got it now. When injured, don't try to do regular activities as one cannot depend on an injured arm to hold and use a hedge trimmer over one's shoulder up a ladder.

I lost my balance from the fourth rung and fell backwards onto my butt and back where I had my oxygen backpack. I looked around. The entire street was empty. Most of the homes empty as people are on vacations. What would have happened if I had really injured my back?

I gently got up and realized that I had no feeling on my butt. It was going to hurt but it could have been so must worse. I finished cutting the grass, watered my pots and blew everything clean but nothing else. After trying to weed, I gave up after not being able to grasp without pain.

Let's review: I have a huge bruise on the back side of my upper arm, my knee is still swollen and various shades of purple and now my butt. I haven't had the courage yet this morning to see if it, too, is colorful.

So, last night we took this poor body to an outdoor major BBQ. No sun. Sweaters and jackets and it even fogged on us a bit. Have a seat? No thanks, I'll stand. It was too tender and sore to sit! The food was amazing: venison, hamburgers, hot dogs, huge prawns in saffron fettuccine, Korean ribs, various salads and appetizers. I stuck with a taste of the venison, a bit of Caesar salad, one quarter of a hot dog and some green peppers. I did okay. It was great to see people I hadn't seen in a couple of years.

This morning, I am still very tender and will probably just take it easy all day after watching the F1 race from Hungry.

And try to not fall down.

Saturday, July 25, 2015

No Helicopter Here

There are times like yesterday that I take a moment, take a deep breath and really appreciate my life and that I am still alive. And active. Mom and I spent the day together. It wasn't so much what we shared but it was the realization that we have a great relationship that is as dear friends rather than a mother/daughter. She never tells me what to do. She never mentions when I am not having a good hair day. She also tells great stories of things she did and people she met during the days we have been separated.

I feel rather sad that my siblings don't know our mom as a person. She has been sharing lots of stories from her childhood that I have never heard before. She even told me she invited my dad to dinner at her house while her parents were away. She had never cooked before!

When she dies, these are the times that I will hold even closer to my heart. She was a fantastic mom who let us fly as kids. No helicopter mom. Expand. Try. Learn from failure. All the life lessons that set the three of us for successful lives both personally and professionally. But, it is our relationship at this time of our lives that we really know each other. The core of a person. The strengths. The worries.

My biggest fear is that I will die before her. That would really be hard on her. It think it would kill her. But, as we talk about everything, we talked about it. Michael has made it clear that he will be her caretaker so she doesn't have to move from the area she loves. She was very touched by that. She adores him and trusts him.

With blue skies and a bit of a cool breeze, we walked around the goat farm and little downtown area before having lunch at the counter of our favorite dive. It was there we had a chat with the 84-year old third generation owner and met one of the grandsons for the first time. Mom had a lot of fun. I had a lot of fun. It was really a day to be tucked away to be remembered.

Friday, July 24, 2015

Day with Mom

Mac, my PT for my hip, looked over my wounds from Tuesday's fall and declared them ugly but not horrible. Nothing broken. Nothing that would require a trip to the ER. We had such an interesting session that I almost wanted to have coffee with him to finish the conversation! We touched on topics from politics to business to life. Such an interesting person.

Afterwards, I showed off my bruises to the pulmonary rehab staff, had a quick chat with Sherman before going to Costco to order my contact lenses for the year. Also, I bumped into a person from the school were I got sick. She got a job there when she was 19-years old and now her daughter was on her way to college. Time flies. We gossiped. We updated each other. We became Facebook friends. It was nice to reconnect.

It's Friday! A fun day is ahead. Mom and I are going on a field trip to our favorite dive south of us on the coast and a visit to the goat farm. The ride along the coast will be a rare event for her. We have lots to talk about. My niece is driving down from Sacramento to take her to lunch tomorrow. I was not invited as I think she wants to talk with just her. I think that is fantastic. I had a long message chat with William yesterday not knowing until the end that he was in Australia. I thought he was leaving next week. What a surprise! I will show off my bruises as mom doesn't know about the fall yet. I also am working on a special project that I can't blog about but hope that it all comes together next week. Mom doesn't know anything about that yet. So much to share. We will be talking non-stop all day!! I'm exhausted already!

The weekend? Gardens. Naps. Calm. Just preparation for a wild night next Friday at the number one restaurant in SF with a group of seven followed by a visit to a nightclub. I will need coffee. Lots of coffee.

Thursday, July 23, 2015


The human body is amazing. The pain from Tuesday fall has greatly decreased. My knee is still swollen but I have no internal clicking or pulling or strain. I can grasp things with my thumb and bring my hand up to my chin, which I couldn't do yesterday. But, I think I will pass on the rehab class today and just go to the PT for my hip.

Instead of staying home alone and moaning yesterday, I had Winnie and Oliver visit for a few hours. Suddenly, I forgot the injuries and did what needed to be done. The more I used my hand and arm, the better it worked! We first cut strawberries and rhubarb, mixed the topping and got the Crisp into the oven to cook for an hour. While waiting for that to be done and the hot dog crescents to be popped in afterwards, Winnie got to work on her first very intricate paint-by-number while Oliver watched Superman I, sent with him as a surprise gift from his dad at breakfast.

Winnie made the crescents, we tried to set up the picnic outside but it was cold and a swarm of small bugs landed on the blanket. We looked at each other and she said, "Maybe we need to eat inside." Smart. We lit candles and drank sparkling water and chatted throughout the meal. It was lovely.

Afterwards, we walked to the park and probably within 10 minutes, Natalie joined us. Her MRI went very well and she hopes to hear the results soon.

I slept like a baby last night.

Wednesday, July 22, 2015

Falling Down

I hate when I do something stupid. After meeting with my PT Mac for a lovely session opening up my hip followed by the rehab class, I kept my running shoes on. That was unusual. Usually I change them at the gym for my street shoes.

After class, I quickly flew home to get the Barbacoa in the oven for four hours. The house smelled heavenly. At 4:50PM, I was walking on the hardwood floors from the family room into the front entrance when the tread of the running shoes stopped me mid-stride. I fell. I fell hard.

I fell so hard that I had to take inventory before trying to stand up. The damaged seemed to be all on my left side: hand, elbow, arm and knee. It was ugly.

I am not a crier, never have been but for the first time in a long time, I felt like crying. I had been pain free for less than a week! Now, I had fallen and my body was really in pain! Frustration! This will not allow me to workout!

Immediately, I iced my knee, took an Aleve and phoned Michael for sympathy.

This morning, my knee is swollen, my thumb is very tender and I cannot grasp or use it in any way, my bones between the wrist and elbow are very sore and my elbow is not working fully.

Other than that, I feel great! HA!

Natalie is having an MRI today and will be dropping Winnie and Oliver off here for a visit while she goes over the pass for the test. She will be gone about three hours. I am so looking forward to hanging out with my favorite kids on earth, I just hope I can do everything I want to do with them with these injuries.

Here we go!

Tuesday, July 21, 2015

Feeling Fit

Mom bought herself a Dell tablet for $110.00 from her best friends at Best Buy and had it all set up except for the wifi. That was my job for the morning. Phone calls to Comcast didn't fix it. I finally just sat and thought about it all then realized where we were going wrong. Boom! Got it! My brain hurt from having to think so hard! I am an Apple girl so working with the Dell was a challenge. My mom looked at me like I had just performed a miracle. She even took me to lunch afterwards!

It was still so hot and muggy yesterday but a bit cooler than Sunday. Since I had worked out, I had my supplemental oxygen with me and used it! It was so helpful while hauling groceries into the house then making deviled eggs, my breakfast casserole and dinner. The fog arrived last evening but somehow, it was just plain warm all night. I want my cool coastal weather back, please!

It may have been the 4.0 earthquake that awakened me around 2AM and I was not able to get back to sleep until 4:30. It is going to be a long day. After a few errands to prepare for my picnic with Winnie and Oliver tomorrow, I have my PT appointment for my hip just before my rehab class. I still have no hip pain and so very happy about it. The goal is to get home ASAP to begin our dinner of Barbacoa Tacos, which require 3-4 hours of braised meat in the oven. This will be my first time making it and rather excited to find something interesting and so perfect for my diet. Recipe HERE

I am feeling pretty good and finally getting a solid workout. My new relationship with the elliptical has helped but the major difference has been changing from a recumbent bike to an upright bike, which is better for my hip. It takes more work to propel it so I perspire and my heart rate greatly increases. I realized that I was walking out of the class feeling fit and healthy, which is a great feeling and one I have not felt in a long time.

Monday, July 20, 2015

Steamy Sunday

Hot and so muggy. It was 80 degrees in the house yesterday. We just don't do that here on the coast. There was a tropical storm hitting Southern California bringing humidity but the rains didn't quite reach here. By the late afternoon, with the sun streaming into the family room, we were HOT! I was even finding it difficult to breathe! How do people with lung disease live in areas where this humid weather is all summer long? Atlanta? Chicago? The entire South? My hat is off to you. I was really struggling yesterday but I do have to remember that we don't have air conditioning. That would have helped!

A year ago, a new Italian restaurant opened less than a mile north of us. Since it was Italian, we never went. As it was so hot in the house and not a lot of food to choose from for dinner, we hopped in the car and went to try it out. It was beautiful with rich stone and wood, an outdoor eating area and hardly anyone there. It was only 4:00, after all. We sat at the bar on the dark brown leather chairs all alone and  watched all the plates of food go by us. What a great place! The food was fantastic, the staff was speaking Italian to each other (love that) and it was all paid for with the $50.00 gift card I got from my university hospital for participating in the focus group for the ILD rehab program. Thank you very much!

And the Giant's swept the Diamondbacks.

Today and tomorrow are also going to be challenging as the cool air is not set to arrive until Wednesday. I will be bringing oxygen with me for support. After working out at the other rehab, I will swing by the butcher's, mom's house then Trader Joe's after lunch. Mom bought herself a new Dell tablet and needs my help to set up the WiFi. She is so excited! Did I mention she is turning 87-years old and she is learning new hardware? Love that.

Sunday, July 19, 2015

Recipes for the Week

It is just beautiful here on the coastside in northern California. I sat out on the swing and read for over an hour yesterday after doing all my chores. Laundry and gardening were done. The clouds are high this morning, the only sign of the showers from a tropical storm hitting south of us.

Michael needs to do errands today so I will be entertaining myself. A walk. Lunch. Reading. Watering the garden. We will be going out for dinner together early this evening.

But, the routines begin again tomorrow with food shopping. Here are the recipes for this week for those of us on prednisone. We don't process food properly. We must focus on protein and non-starchy veggies.

Cheesy Chicken and Spinach Casserole - I use 1 lb. of chicken for 4 servings and cut the recipe in half. I also use low fat cheese, non-fat cream cheese, mayo and sour cream.  HERE
Boursin Deviled Eggs - HERE
Linny's Whopper in a Bowl - HERE

BBQ Bacon Wrapped Scallops - HERE
Eggplant and Chicken Parmesan - HERE
Barbacoa Tacos - Using La Tortilla low carb tortillas. HERE

Saturday, July 18, 2015

Inner Voice

Well, the best laid plans...

Throughout my life, even when I was a child, I have always listened to my inner voice without question or pause. Yesterday, after driving into the city for my annual chat with the endocrinologist, my car just drove me to the parking garage instead of the valet parking area. I haven't parked in the garage for ages as it is the same cost to valet it but suddenly, I realized I was turning into the garage.

Through the years, I have found a sneaky little hidden away area where there is always a spot available. Never fails. After backing into the perfect space, I made the long walk to the elevator and up to the clinic. Early, of course.

But, the doctor was running an hour late. I texted mom that we would meet for lunch but it may be later than usual. No problem. Finally, the doctor reviewed all my records, ordered thyroid function and bone density tests, told me I am doing very well and I headed back to the car.

Turned the key. Nothing.

I phoned my knight in shining armor. He said it sounded like a battery problem and that it needed a jump. Call AAA. I'm worried that it might need to be towed and am also worried that the height limit of where I was parked was only 6'6". Can a tow truck even get to me? By the sound of my voice, Michael asked if I wanted him to come up to the city to rescue me.


Under an hour later, there he was with a smile on his face. He jumped the car, it started right up and off we went. He went back to work, I drove it straight home before going out to food shop in the other car. Mom? We chatted while I waited to be rescued but had to cancel lunch. We will meet on Monday.

Had I valeted the car, it would have been in a tight space and they probably would demanded that it be towed. Thank you again, little inner voice.

Friday, July 17, 2015

Back into the City

After the rehab class yesterday, I met with my physical therapist Mac for our first real workout together. He slowly did some stretches on my hip them showed me four really good ones to do each morning. He then put his fingers on the one glute that had atrophied and felt around for a "knot" and held it. Searched and held. Searched and held.

He then asked me walk to the fake stairs to learn to hang my leg like dead weight while standing on a stair. While walking to the stairs, I was shocked. I had not walked so freely and pain-free for a long time. My gait was normal. It felt fantastic. It was nothing short of a miracle!

Mac reminded Type A me that the challenge is to stretch slowly and not to over stretch as that will just tighten everything up instead of the desired opposite effect.

This morning, I am going back into the city for the annual meeting with my endocrinologist. As he was one of my dad's at the school where I got sick, we will talk about his two wonderful children who are finishing up college at the moment. He was the doctor who wrote the referral for me to be seen at the university lung clinic way back in 2004, the referral for the weight management group in 2010 and the most recent referral to be seen by the orthopedic clinic for my hip issues. He saved my life.

After the appointment, I am meeting mom for lunch.

A car ride, a meeting with a dear doctor friend and lunch with my mom. A fun day ahead.

Happy Friday!

Thursday, July 16, 2015

No Weight Gain!!!!

Wednesday dawn. Drove into the city with very little traffic, made most of the traffic lights and got free street parking all because it was so stinkin' early! Wonderful but awful at the same time. I arrived at 6:45 for my 7:45 appointment. Starbucks! Americano! The good news is that after not meeting with the nutritionist for two months, I am the same weight. Even while having problems working out, I didn't gain weight. Hugh sigh of relief.

I skipped back to the car, took another set of freeways down to visit Michael and we went out for breakfast. He enjoyed a huge bacon omelet and I was so happy with my Egg Beaters. Afterwards, I drove to Safeway then had a glorious walk on the pier and the lagoon. No pain this morning.

After the rehab class today, I have physical therapy for my hip. Our first meeting on Tuesday was to assess and set a plan for treatment. This is will be the first time of actually stretching my hip out and working on my damaged glute.

My rehab boy Dick phoned yesterday. He sounded horrible and very weak so I am worried. He is home from the hospital and struggling with stamina after a bout with pneumonia. He has not been healthy since last October.

And the drive into the city? I get to do it again tomorrow to see the endocrinologist right in the middle of the morning rush hour traffic. Fun, fun, fun!

Wednesday, July 15, 2015

PT for Hip

I've been up since 4:30AM to get dress and hit the road by 5:45 for the appointment deep in the city to see the nutritionist. It has been a while. I had to cancel our last appointment to go to a funeral. Michael is taking the day off so I am meeting him for a late breakfast followed by food shopping, a walk along the ocean and a nap.

The PT appointment for my hip was interesting. The goal will be to loosen it up with stretches and add some strength exercises. He also said that I should not work out everyday. I explained to him that working out has postponed lung transplants and that not working out puts that in jeopardy. He said it was okay to take a walk along the ocean but just not my hour-long walk. It is good to workout in the gym but not everyday so I can give it time to recover. I don't know what I am going to do.

Short term, I have pulled way back and will learn to stretch out my hip and add the exercises to my morning routine. I will try to modify my workouts to give my hip some time off.

Long term, I will continue to explore other options. One thing I am considering is an electric bike to ride on the coastal trail. When I have gone too far or short of breathe, I can kick up the assistance of a battery powered motor. In other words, I can ride a bike away from traffic on a paved path along the ocean with assistance if I need it. The other option I am pursuing is the elliptical. If I can work up to 10-minutes, I will feel like I am having a good workout.

At least I have a plan.

In the meantime, I am being more mindful of my hip, not sitting with my legs crossed for any length of time and learning from Mac, my physical therapist, though sometimes he message is hard to hear.

Tuesday, July 14, 2015

Not Happy about Care?

A sweet, soft-spoken, lovely woman in my rehab class had cataract surgery. When the eye doctor asked how she was doing during the followup appointment, she replied that she felt she could see better with her glasses before the surgery. He turned his back to her and walked out the door. She later found out that he wrote on her file that she was an aggressive patient. So here she is, months later with one eye waiting for surgery and she has not contacted any other doctor as she is afraid that she will be thrown out of their offices, too.

One of my favorite people in the class is a Texas Panhandle raised, earned PhD, university business professor and an advisor to a former Secretary of State proper gentleman. He has been asking about my mom's eye problems because he feels something is just not right with his eyes but didn't know what to do about it.

We are so fortunate to live in an area with two highly respected research facilities. Today, I am going to give them both the phone number and map to the eye clinic where mom is seen for her macular degeneration.

What continues to surprises me is how people do nothing and live with a problem. Or, are afraid to tell their doctor that they want a second opinion. Had I not gone above my doctor's head by contacting my university thyroid doctor and asking for a referral to see a pulmonologist, I would have died a long time ago. I was misdiagnosed and was becoming weaker and sicker every day. 

Please, if you don't like how you are being treated medically, change doctors! Don't worry about hurting your doctor's feelings. This is your life. 

Monday, July 13, 2015

Time Flies

When we were with William, he mentioned how quickly time flies by. He couldn't believe it was already July. We laughed and said, "It gets faster the older you get."

This year feels like it has just begun. I think it is because Michael had the flu during New Year's and I fought the flu for three months beginning in mid-January, then back to the hospital with a virus in June. There has been so little time to enjoy, explore or play. It has been about recovery.

This week begins with more on that theme. Tuesday and Thursday, I see Mac at my rehab hospital for one-on-one therapy for my hip issues. I am hoping to get some relief and build some strength so I can walk a bit of distance without pain. Because I cannot hit the treadmill hard, I don't feel fit. There are appointments this week with the nutritionist and endocrinologist so we will be talking about it.

Mom has an appointment to have her hearing aids checked this morning, then we are going to zoom up to another Costco to be fitted for a new distance contact lens. I cannot read street signs. I need one strength stronger. When I was fitted with a new sample last week, the doctor told me to test them for a week before ordered them for the year. Smart. They were fine initially but I noticed I needed a stronger prescription going into the city on Friday when I couldn't read the license plates on the cars right in front of us. That is bad.

But, it is Monday. A new beginning to a new week. A package ready to be unwrapped. A gift.

Sunday, July 12, 2015

Sunday Fun

Michael is going to sand on a car most of the day. I have been itching to organize several drawers in our bedroom and get some laundry done. But mostly today, I will be thinking about William and Michael's cousin's 17-year old son meeting to talk about being a live sound engineer and watching him work the concert tonight. Makes me smile.

After doing my yard work yesterday, I spent several hours in the back garden, sitting in the shade of the large umbrella while reading my latest book that has become an obsession, "Fall of Giants" by Ken Follett. I am on page 266 of 942 in the first of the three books of the series. I will guarantee that some time will be spent on the swing in the side garden today. With the book. With a glass of iced tea. Sounds just about perfect.

Anna texted yesterday that Doug was healing well from his brain surgery, according to the doctor, and the staples will be removed in a week. They have his pain management under control and he was feeling better. Nicer. Even leaving the house to see a movies and to have lunch.

One side effect of our drought is the proliferation of ants. Lots of ants. Lots of ant hills. They are just trying to find food but driving all of us nuts. I found them inside a covered casserole dish inside a closed cabinet. Someone told me they just found some in their refrigerator. Sneaky little things. They decided to visit our stand of birch trees and suddenly, we have sticky leaves from aphids. Some leaves are now turning yellow and dropping. I worry that the trees may be feeling weaker due to the lack of deep watering but now they are trying to fight off the ants.

Every few years, we have some infestation issue and have stakes to insert into the trunks, which kills whatever was attacking the trees. Within a few days, the tree recovers. Michael is going to insert the stakes this afternoon. We love that stand of birch and I don't want to lose them.

But, it will mostly be a quiet Sunday before a busy week.

Saturday, July 11, 2015

Evening with our Son

It was one of those nights. Though the traffic was horrific and it took forever to drive a few blocks, we arrived at William's hotel in the heart of the city right on time. A minor miracle. He had been wandering the city all day and was just making his way back from the Hayes Valley area. Yes, he did have his most favorite burrito on the planet. It is served in a true dive on 6th and Market, the worst street in the city. He dreams about their burritos on the airplane flying into town. He had texted earlier that he didn't want a big dinner, so we cancelled our dinner reservation and made our way to the W Hotel and their fancy lounge for cocktails and conversation.

He was telling us about his roommate's mom. She hid that she was having problems with her lungs, finally saw a doctor, refused to quit smoking while on supplemental oxygen, was put on hospice and just died. Her daughters are still reeling.

I know it sounds strange but there are a couple of people in my ILD Support Group who are not honest with their children about their illness and very secretive about their care. I guess I just don't understand the reason. Do they feel vulnerable? Are they worried that they will be the center of too much attention? I just don't know. But, what was most disturbing to his roommate was that her mom didn't take care of herself.

It came up and I commented that I hoped that my illness was not even a thought in his everyday life. His reply really made my heart sing. He said that because I take care of myself, it relieves the stress of worrying about me. I have it under control. I am doing all I can do to live longer. That comment makes me want to eat even better and exercise even more!

He told us about this current tour and were thrilled to learned they have sold out an upcoming concert at Madison Square Garden. That is a big deal. The tickets sales around the world are going well. He also mentioned the reindeer hot dogs in Norway!

He also shared some current stresses and we thought he didn't need his parents to add to that stress. So, all of us made the decision not to go to the sound check tonight. We were able to see each other and talk for a few hours so Michael and I decided to let him focus on his work. We're staying home. He also told us he will be driving down in October. That is something to look forward to.

We walked back to his hotel and ran into several people from the tour, chatted and left a trio of them heading to our favorite tiki bar on Michael's recommendation. We put the top down on the Porsche, cranked up the heater and drove the down the coast with the stars over our heads.

It was so good to see him. It was so good to have a live (no phone or computer) conversations with him. It was so good to just be together.

Friday, July 10, 2015

Eye to Eye

William's texted last evening to see if we wanted to meet in the city for dinner tonight. Oh, let me think...YES!!! We are going to meet at his hotel then go to one of the Food Network Star's restaurants via cab. It will be great to look him in the eyes, smell him (I guess it's a mom thing) and have a real conversation without computers or phones involved. Early evening on Saturday, we will be meeting across the Bay at the venue for the sound check and another dinner together before the concert.

What I am also excited about is that we had Michael's cousin's son connect with William last night. The VIP tickets are waiting for he and his dad for the Sunday concert in LA. Jared is interested in becoming a sound engineer so William has invited him (after a request from Michael) to hang with him. Makes me smile.

But, before all that happens, mom has her shot in her eye this morning and I need to get Mary's sheets and robe in the mail for her birthday next week. But, most importantly, I got a phone call from my rehab boy Dick's wife last evening. He is in the hospital with pneumonia. He has been struggling with lung infections since last October, had a couple of weeks of feeling good but no energy and now...

I am worried.

After I leave mom this afternoon, I am going to swing by the hospital for a quick visit with him.

An update regarding Natalie: As they couldn't find someone to watch the kids for a week while they celebrated their 10 year anniversary in Hawaii after her mom injured her back, they arranged to take the kids with them. They leave Monday. Aloha!

Thursday, July 9, 2015

Children All About

It was child-filled day yesterday! Once again, the excursion to the university-owned ranch was fantastic with Barbara and her daycare kids. There were nine kids and three adults, we met the only male goat and his musty smell to attract the females, held a baby goat, brushed donkeys and goats, fed the sheep, softened our hands with lanolin from the sheep's wool, carded the wool and made it into bracelets, held and fed chickens, gathered eggs, met a rabbit, saw a lot of bones collected on the property and close by, ate produce in the garden and took home cauliflower plantings in paper cups. The weather was rather perfect as it is usually very hot. This year, there was a nice breeze and overcast yet pleasantly warm.

But, the best for me is always Barbara's daycare kids. They are a joy. So full of energy and so willing to try anything. She had invited a couple of her former kids to join us. They were so tall and so old! I remember them as just kids.

The perfect ending? Ice cream at the local Rite-Aid!

The ranch had no cell service so it wasn't until we got back into town that I got a text message from Natalie from earlier in the day. I texted back and we ended up meeting at my house. Oliver's favorite thing was to pick the Meyers lemons and we made lemonade together. Then, he went exploring the yard. He and Winnie played hide and seek followed by Popsicles on the swing. Natalie and I were able to chat. She was picking up her new/used car within the hour and their plans for Hawaii on Monday were being changed. She was trying to add the children to bring them along since her mom injured her back.

Suddenly, they were gone. The house was quiet but my soul was filled by a day filled with children.

Wednesday, July 8, 2015


Doug's brain surgery update: It has been rough. The pain was so bad that they were given the doctor's approval to double up on the percocet. That is a lot of pain! The staples come out on Friday.

Rehab Class update: I did over three minutes on the elliptical yesterday! That is a big deal! I was wet from sweat afterwards but not short of breath or in any pain. On Thursday, I am going to aim for five minutes.

Michael update: His feet have really been an issue. The man is in great shape but the weak part of his body is his feet. He spends all day walking and standing and this does not help. He has tried a variety of shoes and a variety of socks but they still hurt so badly that he tried to stay off of them on the weekends. I was mentioning this to Betty, my brother's wife, and she told my brother. He sent the most amazing gel-filled inserts that seem to really help. No complaints about his feet when he gets home in the evening.

Food update: Recipes for the week are below. These recipes are for people who are on prednisone. We just don't process sugars properly. No grains, no carbs, no fruit, no milk or yogurt, no starchy vegetables. Meals are 3-4 ounces of protein and non-starchy veggies.

Smoked Salmon Deviled Eggs - I use non or low fat sour cream, mayo and cream cheese HERE
Grilled Cheeseburger Wrap - I use La Tortilla low carb tortilla and low fat cheese HERE
Baked Stuffed Mushrooms - I use Chicken Italian Sausage (Trader Joe's) and low fat cheese HERE

Herb-Crusted Lamb Skewers with Dijon Mustard - I use 1 lb. of meat for 4 servings HERE
Seared Scallops with Wilted Greens - HERE
Grilled Shrimp and Chicken Sausage - HERE
Spanish Baked Chicken - I don't use the raisins or brown sugar HERE

Tuesday, July 7, 2015


Natalie and Ethan are celebrating their 10-year anniversary next week with a rerun of their honeymoon in Hawaii. But NASA, they have a problem. They were having Winnie and Oliver stay her with mom for the week. She and her husband live in the Sierra foothill and the kids have a ball with all the open space. Her mom fell, cracked a vertebrae and is in a lot of back pain.

Natalie phoned last night to very gently ask if we could have the kids with us for the week. I love these kids. I know these kids. She said she would put them in gym camp all week so it would be the mornings and dinner to bedtime. Though I wish I could, I know that I just don't have the stamina to handle them for a week. After an afternoon visit, I am exhausted. Besides, I have two doctor appointments next week, one at 7:30AM in the city. Sadly, I had to say no. Michael said absolutely no. He worries about me and knows it would be too much. I would get sick. It would not be good.

Times like this I wish I was well. Mad that I "can't."

But then I need to be reminded of all the activities that I can still do. I may not be able to walk up hills or go to the movies or eat a regular diet but I have managed to live an active, positive life. No whining allowed!

I have a pretty good life despite the disease.

Monday, July 6, 2015


Fun is over. Refocus. Back to the other rehab this morning and the rehab class tomorrow. I need to remind myself to watch every bite of food. There has been waaaay too much "bad"food the last couple of days. I even had a glass of champagne at Rick and Natalie's last evening! A very rare event.

After working out this morning, I will be spending the day with mom. But, we are having extra fun this week. On Wednesday, we are meeting Barbara and her day care kids at the working ranch just south of town here on the coast. The kids love it there. They can catch, hold and feed chickens, brush the donkeys and goats, feed the sheep, card the wool and overall, just hang out. Mom loves watching the kids interact with the animals and each other. They are so kind to each other, it is a pleasure to spend time with them. They treat mom as a dear friend not an old person. She loves that.

And, as the TV commercials say: but wait, there's more! William is going to be working across the bay next Saturday. We are going to meet him for the sound check then go out to dinner together before the concert. We are bringing British Don with us for added fun.

A fun week ahead. A reminder to say focused on my health. Diet and exercise is important. Sleep well. The goal is to stay as healthy as possible while adjusting to my hip issues and the progression of the disease. And have fun along the way.

Sunday, July 5, 2015

Singing Along

Sometimes I think I have every lyric from every song written between 1935 and and 1981 (the year William was born) hidden in the deep recesses of my brain. This includes Broadway musicals. Last night, we happened upon "The Music Man" on Turner's channel. Now, I have seen this musical at least 100 times and we had the Broadway show album when we were growing up so I know not only the words to the music but also most of the dialogue.

All I can say is poor Michael. That man sat through me singing every song (if a duet, I sang both parts at the same time!) and speaking the best of the dialogue with the actors. Finally, I watched the last part from bed while he drifted off. I haven't enjoyed something on TV so much in a long time. Such a well written musical and perfect for the 4th of July weekend.

Today, we are taking off in the car for a ride down the coast after I pour hot pralines over the ganache-covered chocolate cake for Rick and Natalie's party this evening. Sometime today, the pots in the garden will be watered, the Formula 1 race will be enjoyed and it will be a nice Sunday. Together. My favorite kind of day.

Where I was raised in the Midwest, there was always the parade with kids in costumes. Here is my blog about the year, with dad's brilliant idea, we won the grand prize: HERE

Saturday, July 4, 2015

A Quiet 4th

Happy 4th of July! A great holiday! Parades! Music! Fireworks! What could be better?

We are having a quiet one today but going to a party tomorrow so I will be baking a cake later. No fireworks for us this year but it is probably going to be too foggy to see them anyway. We will watch the Boston Pops Concert later to get in the spirit.

So, maybe it was not the best idea to be on the freeways just before a major holiday. It was heavy going to visit dad and back to where mom used to live. We drove by her house and there was someone living there! It had been empty for three years. It made mom so happy someone was finally enjoying her former home. Her three girlfriends where excited to see her, they had a good chat and a lovely lunch before we began the trek home. It was a zoo. Freeways packed. The 90-minute drive took over two hours. Then, after dropping mom at her place, I began trying to get home. Michael had phoned to warn me that the pass was stopped and he had finally made it home from the north, which was also jammed with cars. What happened was that people were flocking to the coast to cool down at the same time people who lived on the coast were trying to get home from work on a Friday night. Just madness.

I finally made it home and we sat in the back yard together as I tried to recover. I was exhausted and spent.

What I learned from the trip? I didn't breathe well in the Valley heat and deeply missed my coastal fog. It was around 100 degrees the entire day and it just sapped my energy. I will force myself to stay rather quiet today: take a walk, wash and iron the sheets, run into town this morning to buy food for today, pick up some dropped flowers in the garden and watch the qualifying for tomorrow's Formula 1 race from Britain. A nice day. A day to recover before a nice small birthday party tomorrow.

Happy 4th! Hope you have fireworks in your life today!

Friday, July 3, 2015

Into the Valley

It is 6:30AM, I am dressed for the hot weather and ready for the 200 mile excursion into the Central Valley today with mom. I will be hoarse at the end of the day from all the talking! It is always very sweet when we visit my dad in his crypt. She greets him with a kiss on her fingers then to the marble front. Before we leave, she repeats this and tells him she will be back soon. Almost makes me dry every time. Then, we drive a short distance away to a plaque she bought for her brother who is still missing in action from WWII. She cleans it and polishes all the ones around his memorial to the missing.

We have a lunch date planned with her girlfriends then a long drive home. Michael is not working today so he will meet me here later this afternoon. We will be together all weekend. Love that.

I saw a photo of Doug's scar to remove his tennis ball-sized brain tumor. I swear, it is huge! It is the shape of a sideways V and was help together with at least 200 staples. Amazing that he is doing so well with very little side effects. He is talking a mile a minute - due to the drugs - and walking the hallways. They are expecting him to be released today. Nothing short of a miracle.

After watching the news, it seems most people left for their weekend holiday last night so we are expecting the traffic to be light today. Hopefully!

Thursday, July 2, 2015

So Very Grateful

I was the energizer bunny yesterday. Before 8AM, I was out cutting the grass and doing a bit of trimming. Since the holiday is Saturday, I wanted to have it all done in case we have people drop by. After a quick Safeway run for cake ingredients, I drove back into town for two hours of bliss: hair colored, cut and a facial. I crawled home relaxed. The laundry and ironing got done and a fantastic dinner was made before Michael got home to nab me. We went to his hair appointment together. A really nice day.

And we got other good news: Doug was up walking the hallways with the physical therapist, transferred out of ICU and expected to be released from the hospital on Friday. Huge sigh of relief.

The housekeepers are due early this morning, so before the rehab class, I need to buy a gift certificate from a local restaurant and a few cards. We are going to Rick and Natalie's for dinner on Sunday but we missed both of their birthdays. They are serious chocolate people so I am making the praline-covered chocolate cake for them along with the gift certificate, their favorite bottle of bourbon and cards.

But my focus is on tomorrow. Mom wants to visit my dad's crypt, change the flowers then meet one of her good friends for lunch so we are leaving very early on our 200 mile round trip excursion into the Central Valley.

Busy time.

It is times like this that I am so grateful that I can drive 200 miles into the heat of the valley with no oxygen to organize. Grateful to have good friends to share conversations and food and health information (we are all of a certain age where we share medical updates!). Grateful that Doug is clearly on the mend and will return back to his life as a newly retired person. So grateful that we are still able to maintain a house. And my mom. It is marvelous to enjoy an adult relationship with my 86-year old mom where we are honest with each other, laugh a lot, share personal concerns that are kept private between us and just enjoy each other's company. It is a gift.

Never, ever would I have thought my life at this point would be so independent from the disease when I got it thirteen years ago. For that alone, I am extremely grateful for everyday.

Wednesday, July 1, 2015

Giving Advice

Doug's brain surgery went as planned yesterday. No complications, though the size of the tumor was larger than expected. It was the size of a tennis ball. Imagine. Wow. Now we all wait to see if there was any damage done to the surrounding area during the surgery. We heard that he was joking in recovery, so that is a good sign. Fingers crossed that he will be out of ICU soon and home within the expected four days in the hospital.

I also spent my time in the hospital yesterday, but for much happier and less scary reasons. Six people sat in a small room and talked about what they would like to see as part of the curriculum of a pulmonary rehab program specifically for people with an ILD. The stories around the table were heartbreaking. Two older men broke down several times, one just lost his wife three months ago and the other was not dealing well with the disease and all the complications. He felt very isolated and alone. I was able to speak with him and offer him some hope. He really needs to hook up with a rehab class near him. I explained that he would be welcomed and not have to explain anything. Everyone in the rooms understands what he is feeling. Social and emotional support.

It was the first time in a long time that I left feeling that we offered good information. Lois, who has been running my rehab for 18-years, gave me all of her packets she hands out and works through during the first eight weeks of the education part of the program. They couldn't believe that she just gave it to them. It was invaluable. It included her phone number and an offer to come and visit our program. As we all left the room, we were given a $50.00 gift card as a thank you for offering advice, wisdom and experience.

It is gorgeous here. It will be in the low 70s here but in the high 80s and above just over the pass. Fog is thick at the moment. By 8:00, I plan to be out in the yards cutting the grass and picking up the gardens before my noon hair appointment in town. A nice day.