Living Well with a Bad Diagnosis - Lung Disease

Tuesday, January 31, 2017


I received the following information from my ILD Support Group: MonARC Bionetworks is a Patient Powered Research Network committed to accelerating research in IPF by facilitating collaboration between patients and researchers. It is completely free to patients. If you are interested, their website is HERE with all the information.

Today is the only morning all week when I don't have to be anywhere until rehab around noon. A quiet morning to gather myself and to run minor errands. I am out of Aprodine and worry that I won't have it on hand if I feel the beginnings of a cold. First thing on my list is to order it from the Rite-Aid pharmacy, as they usually don't carry it.

The bank statement came so I need to balance my checkbook then swing by the bank to pay the credit card bill. Today also promises a dinner of Asian Meatballs followed by an Irish Fiddling rehearsal. Oops, I just received an email that both Leslie and her husband are ill. Sounds like the flu! The rehearsal is now cancelled!

In rehab, I will be able to determine if my knee is healing well. There is no pain when I walk or use stairs but it sometimes just feels weird and it is still a bit swollen and numb in one area. It will feel great to exercise again.

Monday, January 30, 2017

A Chapter is Written

I am shuttling cars over the pass this morning before meeting mom for her monthly shot in her eye to treat macular degeneration. Our 1997 Mercury Tracer - the only car my string bass fits into - has a leaky oil pan and it is creating a messy driveway. It will be in the shop for two days and back just in time for the orchestra dress rehearsal on Wednesday.

It is going to be a wild week. Lots of rehearsals, another meeting, my eye needing laser to reduce the pressure and the orchestra concert on Saturday night.

Last Saturday was a washout. I did nothing except pay the bills. I was exhausted. Yesterday, we went over the hill to food shop, I made baklava for the guys at the garage this morning then made dinner. Lots of pans!

While I was cooking, Michael did the gardening and started a larger project of removing some large tule from their pots. It is going to take a lot of effort to remove them properly without breaking the pots.

Here's a story for you: Years ago, British Don along with his friends Paul and Anthony came to America from Great Britain after graduating college. Jobs were waiting for them as they dropped each one off at their new home in their new land. First, Anthony landed in Oklahoma City where he worked for an architectural company and now owns an award winning design firm. We have stayed with him while on our road trips. Second, Paul began at an architectural firm in San Francisco but it wasn't long before he opened his own very successful firm. Finally, Don arrived at his new job having to do with electrical engineering in submarines in Long Beach. Welcome to America!

The three remained friends, British Don got a job in the Bay Area so he and Paul were reunited. The three friends maintained a deep friendship throughout the years.

Don and his wife moved into our neighborhood. Their daughter was William's age so we had a small play group together. After their divorce, we became even closer to Don. Through him, we met Paul. I remember Paul telling me about being diagnosed with colon cancer in his early 40s. He fought it. Two days before he died, he finally stopped and went to bed. He was one strong, focused man.

Paul was a rather famous, extremely creative and an intelligent human. He loved the American-style hot rods. He had a 1941 Dodge convertible that he found in a field somewhere with lots of bullet holes and rust. Through Don, he asked Michael if he would help him with his project. Michael did all the needed body work and dealt with other issues with the car for free. It was the right thing to do. The body of the car was finished by the time Paul died but there were other issues that needed to be fixed for it to be completely finished. Michael also helped with this final stage along with Anthony, Don and Anthony's son. They wanted it finished as a tribute to Paul.

Mark, Paul's brother, is writing a book about his brother and has asked Michael to contribute a chapter about the hot rod. We sat down yesterday and wrote a draft together and sent it off to Mark in England. We also sent it to British Don. He replied that he was still weeping after reading it as all the memories of Paul had flooded back.

We both feel like we accomplished quite a bit yesterday: the chapter's first draft was submitted, the gardens are in order, there is food in the refrigerator, the wash is done. We are ready for the wild week ahead.

Saturday, January 28, 2017


My head and body want to take it easy today but I have so much to do! This is the first weekend in weeks that it is not raining and dry enough to cut the grass. With my knee still not 100%, I am going to try to work out in the gardens this morning. Sometime today, the bills need to be paid, the shopping lists made, the sheets washed and ironed and dinner made.

I need a nap.

The gig with the Irish Fiddling group went really well last night. It was at a local beer pub that has recently won awards for their brews. The place was packed and we had them in the palm of our hands. It was so much fun and not as steamy hot as the last time we played there. I noticed they had tall bar chairs, so I nabbed one and sat on it while playing. Perfect rest for my knee though I always feel that I don't have the strength or ease of movement around the finger board when I sit instead of stand. Michael dropped me off then came back to pack me up at 8PM. He kept mentioning that the place smelled like a locker room. It did smell a bit but I thought it was more an old beer smell.

The entire group enjoyed their free beers so everyone was very happy. Sometimes I wish I liked wine or beer or some special drink. Alas. I don't feel like an adult in these circumstances.

We play at the organic market during a wine tasting next Friday night so that should be fun, too!

Friday, January 27, 2017

Lots of Pressure

I have been taking prednisone since March of 2005. That is a long time and I have almost every side effect listed on some websites online. One, is glaucoma. High pressure in my eyes. My normal eye doctor kept her eye on the pressure because of the prednisone and, as it began to rise, sent me off to my very cool glaucoma specialist Dr. W. over eight years ago. All has been stable until yesterday.

We were chatting, I told him about the three-book Century Series written by Ken Follett that I just finished reading, he told me about his vacation in Hawaii and other fun stuff. He set up the machine to take the pressure in my eyes and he instantly got very serious.

Right eye, fine. Left eye, the pressure was 40. Great in 14, normal for me is around 20 as I have thick corneas. But, 40?!? He was shocked.

So, I was given a new eye drop to add to the other two I take and an appointment to see him again in a week. If the pressure is not down, I will be having a laser treatment to reduce the pressure. YIKES!

After the appointment, I drove home, made a quick lunch and took a long nap. The phone rang and I felt like I woke up stupid. It took time to get my feet under myself and was making dinner when Michael walked in with Lisa, our neighbor. We all had a fun talk for an hour while I cooked. Love that!

I did have problems going back to sleep in the early morning, probably related to my eyes. I am worried.

Today, mom and I are together all day then I have to be in the hip beer bar by 5, Michael is just going to drop me off and run. It should be wild, interesting, hot and I am so happy that I will be playing in a little corner with no one even close to me. Perfect.

The weather this weekend is going to be a rain-free one so I hope to feel well enough to cut the grass and water some pots. Small goal.

Happy Friday.

Thursday, January 26, 2017


My brain hurt after the orchestra rehearsal! Lots of concentration. Lots of having to really focus and think. And count beats. My hand was tired and cramping but the woman on cello sitting in front of me kept trying to shake some life into her bowing hand. "I feel ya, sista!"

Earlier in the day, I was able to tick off the list in my brain of all the little loose ends that needed to be addressed. It felt marvelous taking care of all the things that have been bothering me. I never stopped moving. Still unresolved issue bothering me: No letter from my medicare regarding both of our incomes and their letter acknowledging that I received my medical through Medicare. I need them before we can have our taxes done. My mom has received hers but I am worried that the mailman messed up. If I don't get them by next week, I will have to contact Medicare.

In a fantastic new update: I tried to arrange an appointment with a new nutritionist when I learned that Mr. B. was still on the staff! He is still there! I made an appointment for the first week of March. Thrilled!

This morning, I am going to swing by rehab to show the RNs my knee and offer my promise to return next week. Earlier, I have a glaucoma doctor appointment to check my pressure.

The rest of the day just has me cooking meatballs for dinner and nothing else. I will ponder about and rest up so I am strong for tomorrow. Ah, tomorrow. My mom and I will be together then I have a hot gig with the Irish Fiddlers in a cool beer pub. Hops in a hopping place!

Wednesday, January 25, 2017


I fell into bed last night and really don't remember much afterward. It was one heck of a day. We were able to arrive on time to the beautiful setting right on the inner waterway of the city for the retreat for members of our university hospital's 10 patient advisory boards. There were 70 people in attendance.

The bigwigs made their welcoming statements then the work began. They explained the larger overarching goals with how they intend to attack the problems. We were made to feel that we are a very important part of that process as the patient experience drives so much of what they do. Lots and lots of charts and flow charts and slides on the screen was jammed with information giving us the bigger picture.


I need to mention the potato chips. Homemade. Salty. I fell in love.

After lunch, we talked about more specifics and actually participated in an interesting exercise. Then, a very well done short video was shown and we were cut loose.

This was Michael's first formal retreat. He loved every minute. I felt overwhelmed with the large amount of data thrown at us but he took it all in and reduced it to a simpler format in his head. The man amazes me.

We hit the house, I got dinner in the oven while making hard-boiled eggs. Pots were popping!  Dinner? Done. Eggs a Different Way for Michael's breakfast for the next few days? Done. After a quick comb through my hair, I went across the street to Leslie's house for an Irish Fiddling rehearsal for our Friday night gig.

I was done. Cooked. Fried.

Today, Michael needs to write about a car he worked on many years ago as the person was quite famous, died of cancer and the writer wants more of the details about the car. We are going to sit down and begin the process, have him dictate to me then I will go through and edit it with him. It is only going to be a chapter of the book.

Then, there is an orchestra rehearsal tonight as the concert is coming right up - February 4th. I am so not ready!

Tuesday, January 24, 2017

Meeting and Rehearsal

It felt like life was back to normal yesterday. Mom and I talked for hours and hours while we had an appointment and lunch. It had been over a week since we had last been together. Way too long.

Today is going to be interesting as ninety representative from all the Boards at my university hospital will be at a meeting and luncheon at a fancy restaurant. We were sent some information last evening that reminded us that it will begin promptly at 10:00. Great. I love that. I hate arriving on time only to find people straggling in for the next half hour and the real business not beginning for an hour. It always feels like a waste of time. We will arrive around 9:30, find a good seat and will be focused to begin right on time. Let's hope.

My knee is still numb and sore but somewhat better. I think I will try to get an appointment to have an MRI to be sure that it is not damaged in other ways than what an X-ray would reveal. Tendons. Ligaments.

I am watching my food intake and yesterday was excellent yet I have made a decision to call for an appointment with a new nutritionist, as my Mr. B. as moved on. I really miss him. It helps to see someone every 4-6 months as it keeps me honest.

Dr. K. will also receive an email regarding the drug trial that was supposed to begin this month. I had sent an email requesting to be part of the trial but never received a reply. I'll put her on the trail.

Later this evening, there is an Irish Fiddling rehearsal as we had a hot gig Friday night.

It's going to be one heck of a day.

Monday, January 23, 2017

Another Rescue

It has been raining since we got home. Lots of flooding. Lots of potholes. My screen saver is a photo of the blue sky and palm trees of Palm Springs. It helps is pretty miserable outside.

Mom has an appointment with her hearing aid people at Costco this morning then we will get caught up. It has been over a week since we have seen each other and I have so much to show her, including my knee! It is better each day but I still need to be careful. I was sitting on the floor in the bedroom talking on the phone with Christien in North Carolina when I realized I couldn't get up. Really. That commercial kept screaming in my brain, "I've fallen and I can't get up!" followed by visions of more hunky firemen having to coming to my rescue. But, my own hunky guy grabbed me under my arms, lifted me up AND didn't hurt his back in the process! What a guy.

I am worried about not being able to workout for a few weeks and will probably still go to the rehab class to do whatever the RNs suggest. Treadmills are probably on hold for now.

We are both on the wagon, food-wise. The refrigerator is filled with our normal foods and the weekly menu is set. After I fell, I couldn't eat that day so that helped! I feel I need to lose just a couple pounds so I will be very careful this week so they melt away.

Hopefully, we will all have a good week ahead.

Saturday, January 21, 2017

Day 2 and 3 and 4

The Colony Palms is a beautiful boutique hotel in downtown Palm Springs. The bed was outstanding, our room was very private with a small patio at the entrance and a huge old-fashioned claw footed bathtub. We slept well the first night and were making our way down the steps of the patio to the large stone walkway to the restaurant for breakfast. Michael was just ahead of me. Suddenly, I fell. Hard. Apparently, there was a lip on one of the large stones and my sandal front caught it. BOOM! I rolled over and knew I had broken my knee, which also had a gash.

Michael looked shocked. I told him I thought I broke my kneecap and to get help. The manager returned with him, put a pillow under my head, covered me in a blanket then chatted with me so by the time the hunky firemen arrive, I was calm. She was amazing.

They did a quick assessment, got me on my feet and suggested that we find our own way to the hospital, just two blocks away, instead of going by ambulance. My favorite quote of the day was when one of them said, "You look like you're in pretty good shape." Thank you very much!

Michael, realizing that our new/old car would be too small to get in and out of, asked the manager if her car was close by. She handed over the keys. Can you believe that? We drove the two blocks and were greeted by a fantastic man, who wheeled me into the immediate care instead of ER. Smart. No waiting. X-rays were taken and nothing was broken. That alone was good news. For a woman my age who also has been on prednisone twelve years, I was really surprised that I came away with just a very swollen knee with a gash that will heal.

While waiting to be released, we were trying to meet the lunch reservation time with Anna and Doug, who had just arrive to the hotel for the night. We drove back to the hotel, jumped into their car and made our way through the valley to Palm Desert, the Beverly Hills of the region. The rooftop Tommy Bahama's restaurant was perfect! Michael and Anna talked about their dad over cocktails while I was able to begin to relax. Taking a hard fall was so jarring. Afterward, we stopped by the Spa Casino, just two blocks from the hotel in the other direction from the hospital, and gambled for an hour. I limped through it and came away with an extra $11.00!

After a couple of hours rest, we had dinner right downtown Palm Springs at Lulu's. It is a mid-century modern designed restaurant and a hit with Anna and Doug. I fell into bed early.

We all met and had breakfast together poolside at the Purple Plum. Very high end food. Delicious. Anna and I hung out around the pool while the boys took off to check out a baseball card store for Doug. By noon, they headed back to their home just 90-minutes away with a vow to return again next January.

Michael and I thought that we would just split a Cuban Sandwich with pork belly at the hotel restaurant as we were looking forward to our early dinner at Le Vallauris, a classic French restaurant. While waiting for our lunch, a young man appeared with an adorable boxer, Peaches. Michael began chatting with him  then invited him to join us. He had the day off but was eating lunch at the hotel restaurant, where he was the sous chef. After an hour, the executive chef appeared at our table and that began a two-hour conversation, primarily about food. These two had their chops. After hearing where we were going to dinner, they begged us to switch and eat dinner at their restaurant. Two restaurants with totally different food concepts. We decided to go to the classic, fancy French restaurant but only order salads and appetizers. Michael is pointing to their board while we were enjoying the open courtyard surrounded by twinkling lights and very fancy people. We loved their beet salad, Blue Crab salad, house-cured salmon and seared duck foie gras. Perfectly plated then presented and delicious.

We drove back to the hotel, arrived to the restaurant and asked the waiter to let Chef Nick Fall know we were there. He came to our table, told us what he wanted us to order and the magic began. It was one heck of a night.

He sent over an amuse bouche of Osaka Style Crab Fritters with nori, bonito, sesame, spicy mayo. Hello! The chosen appetizers began with the best octopus I have ever eaten. The texture was key, soft yet grilled. It was built on a Peruvian inspired potato base, caperberries then just a bit of heat with a green sauce called aji verde.

Poached Duck Egg. Yes, you read the right. It was served with a soft yolk on a bed of gigante beans, braised mustard greens, lamb bacon, pickled fresno and shallots. He served it with the most amazing bread that was oiled and lightly grilled so it was just a bit smoky. Michael ate it all and refused to share it with me!

I loved the Wagyu Beef Cheeks Dumplings with shimeji mushrooms, ginger, black rice vinegar. He also made us Michael's favorite of the night - Charred Brussel Sprouts with roasted garlic, toasted cashews and honey.

Did I mention dessert? Yes, Nick also makes his own desserts. He sent a Creme Brûlée Cheesecake with guava and dots of a caramel sauce. OMG! After the meal, Nick joined us at our table (the sous chef had the night off) and we talked food, work and kids.

What an amazing day.

The next day, the rains began. We left the hotel early and drove through some flooding but arrived home safe and sound.

What a trip, thanks to our son. William's birthday was yesterday so we had a nice phone conversation with him. He is on tour until the end of February, primarily in the USA. I told him that he created a monster because we now needed to return to Palm Springs and to this fantastic hotel. He liked that.

Friday, January 20, 2017

Shocking Day One

 We had an amazing trip to Palm Springs with lots of sunshine and fun but, there were also two unexpected things that set us back on our heels. The first night, we arrived for dinner to Melvyn's right downtown. Very old school. It was the Rat Pack's hangout and Michael sat in the exact spot where Sinatra used to spend many evenings. We were happy and relaxed and ready to enjoy the experience.

My cell phone made a bit of noise as we were checking in so after we were settled and the food was ordered, I checked to see who left a message. It was Michael's mom. I said, "It's late there. Who died?" Michael's mom goes to bed early, lives a three-hour time difference away so I didn't feel good about it.

I listened to the voicemail. It was Michael's sister, who lives with his mom, with really bad news. She called to tell Michael that their father had died of a massive heart attack. Now, if you don't remember, Michael's parents had five children before they were 21-years old, he left and never saw the children again. It was when computers happened and I tracked him down in New Mexico twenty years ago that Michael first met him. When Michael hopped out of the car, his dad's first words to him were, "What do you want?"

That, in a nutshell, was this man. After three meetings through the years, Michael was done. The man had huge issues and Michael later thanked his mom for leaving him as he would have been a miserable parent. He had five other children, all of whom had nothing to do with him.

So, we are in a fancy restaurant on a vacation and this news set Michael back on his heels. Tears welled up in his eyes. He fought to control himself. I offered to talk with the waiter and excuse ourselves. "He is not going to ruin our night that we have been planning for weeks." Michael knew him. Settled with him. Nothing left unsaid. Still, it was a shock.

Michael motioned to the waiter, "I just got word that my dad died." The waiter asked if we needed to leave. Michael responded, "He was a son of a bitch but it is a shock. What I ask is if you could bring me a shot of a strong bourbon?" Done. On the house.

Later, when we returned to the hotel, he phoned his mom and they talked. The next day, his sister Anna and her husband Doug joined us at the hotel for the night so the siblings were able to talk about their dad. It allowed them both time to express all the emotions related to him, both good and bad.

And that was just day one. Day two, I had an unexpected visit to the wonderful hospital just two blocks away from the hotel! More tomorrow, including lots of photos.

Sunday, January 15, 2017

So Long for a Few Days

This is a so long for a few days. Tomorrow, we are leaving hours before dawn for the 8+ hour drive to Palm Springs to enjoy our Christmas present from William. Today, we are finishing packing and gathering all that we need. It is amazing how much stuff it needed the older we get!

The weather seems to be smiling on us as no rain is forecasted until Thursday and the highs are now predicted to be in the high 60s. It has been so cold here that to have that warmth seems impossible. We will enjoy every moment!

We will be home late Thursday so look for me on Friday.

Saturday, January 14, 2017

One Packed Day

I fell into bed at 10:00 last night thinking that it had been one heck of a day. Running a bit late, I got to mom's in time to chat a bit then make her hearing aid appointment on time. Her hearing has declined and the hearing aids needed to be adjusted. We went to Mimi's for lunch then back to mom's before heading over the pass for home. I had a brief amount of time to change, redo my makeup for the party, put some polish on my fingernails and remember to take my inhaler and oxygen with me.

The Irish Fiddlers had a gig beginning at 5PM. Michael, my stage manager, hauled the string bass into the little car and set it up at the venue for me. Love that guy. We played an hour before the singer announced, "If you are a fan of the sounds of the lower, larger instruments, please be advised that this is the last song with the string bass as she has to go to another party." Funny. We hauled the bass home then drove over the pass to the surprise 60th birthday party of a friend of ours.

We were worried about being late but arrived about 20 minutes before the birthday boy. He was so surprised and said he could never trust his wife again! She really got him! So many of his old grade and high school friends were there. I finally got to meet many couples who enjoyed the car extravaganza Hot August Nights in Reno with Michael all these years. Both of us have a bit of a sore throat this morning from talking and laughing so much!

It was at a fancy Athletic Club. A really nice live band played mostly South American and African rhythms while everyone enjoyed the open bar and the huge array of food. We had planned to leave if we noticed people coughing or sneezing one. It was great!

A dear woman we met over thirty years ago who married and later divorced a friend of Michael's was there. It was fantastic to see and chat with her. Photos of our children were passed around and so many memories flooded my soul. She actually thanked me for being so supportive of her and kind to her through all those years. Wow. She called us, "The Movie Star couple," More Wow. We exchanged phone numbers and will get together for dinner. Soon.

What a day it had been. The drive home was shared telling each other about conversations we had with other people.

Today, I am going to cut the from lawn, try to weed a bit then begin to pack for the trip on Monday. I keep reminding myself it is only for four days, not a month like our big road trips. I will try really hard not to over pack.

Friday, January 13, 2017


William birthday packet did not arrive on time via UPS. Due to a huge storm, it was supposed to be delivered Wednesday then again yesterday but, no. Before heading over the pass for a doctor appointment for mom, I need to swing by the UPS store to find out what is going on.

British Don's new grandson is going to receive a package in the mail filled with cute little outfits and I gifted a nice piece of tiramisu and two cannolis to Richard at rehab.

By the time I was sitting in the lobby of the hospital waiting for rehab class to begin, I felt that all my chores were done. Then, my phone began messaging.

It was Anna. Michael's sister (who we are meeting in Palm Springs next week) and his other sister both had babies within three months of each other when they were teenagers. Both gave them up for adoption. The other sister's baby was adopted by a family friend's friends and they have been reunited for decades.

But, Anna has grieved the loss of her son since he was born 46-years ago. She worried about him. She prayed every night that he was having a good life, a loving family and that he was happy. She wrote to all the agencies to allow him her information if he requested it. She did what she could to find him.

What she didn't know was that his mom had been encouraging him to find his biological parents. This week, his search found his father, as the name was the same. Anna had married, which made her harder to find. Fortunately, the father knew how to contact Anna, gave his son this information and they have been in contact. The first phone call will happen this Sunday. Anna is over the moon. Her wishes have come true: he had fantastic parents, he was happy, he was healthy. He also is married with children.

I am so very happy for her and this came at the perfect time of her life. Her other children are all settled and happy, Doug is retired and she is so ready to add this chapter to her life. I can't wait to hear the details when we are together next week. She must be glowing with inner peace.

Thursday, January 12, 2017


No rain for one day! It was warmish and dry and lovely yesterday. My toes are now a Palm Springs peach and ready for the road trip beginning Monday. The house will be cleaned today while I am out buying baby presents at Nordstrom for British Don's new grandson before heading to the rehab class. A fun day!

Today is my little brother's 60th birthday! How did that happened? He is just a kid!

In other birthday news, I am really worried about my almost 93-year old friend Sherman. We spoke on the phone yesterday, I asked if he could come to the rehab class if I promised a piece of his favorite tiramisu for his birthday. He became flustered and almost overwhelmed with just the thought of leaving his house. Not a good sign though I did get a few good laughs out of him. His birthday is Saturday and I will phone him a couple times a week from now on.

I was telling Richard at rehab all about trying to get Sherman to come to class with my threat of tiramisu. He shared that he had never heard of it. While leaving class last Tuesday, he walked slowly by me while I was lifting weights and said in his slow, Texan drawl: "If a piece of that tiramisu falls off the truck while you are there, I wouldn't mind trying a piece." Done. After Nordstrom, I am going to buy a nice piece for him and two cannolis, one for both he and his son.

A smaller storm is due today and it is cold! We so need the rain since we have been in a long-term drought but not all at one time! In the last week, we have gotten 5 inches of rain but just south of us in the mountains, they got 20 inches. Lots of roads closed, rock slides and trees down.

Wednesday, January 11, 2017

All in the Driving Rain

It was one of those days where I dressed in my fancy workout clothes and didn't change all day. Running errands in the morning before the rehab class, I flew over the pass in a driving rain storm to meet with Michael, who was having our rear brakes replaced for the road trip next week. He forgot to sign William's birthday card and I just couldn't sign it for him. It is our son. He needed to sign it.

After a quick hello-sign this-goodbye, I drove to the UPS store so his birthday presents and card are on their way. All in the rain. Michael mentioned I needed breath mints sooooo, I stopped to buy mints.  In the driving rain. Off to rehab class where I worked out pretty hard.

At home, I cooked the afternoon away. I made a breakfast frittata for the both of us and the best Atkins Sweet and Sour Pork. It was amazing. The sauce didn't have the sugarery sweetness of the real deal but it somehow was even better with a very clean taste.

The Irish Fiddling group has a gig Friday night so we had a rehearsal last night. It was sweet. We had just four of us (the others had colds) and two had returned from fantastic trips. Leslie spent New Year's in Hawaii and Dave had a life changing trip to Sri Lanka. To quote the Blues Brothers, we got the band together again.

To get to the rehearsal, we had to run the bass through the rains. Thankfully, I still had my workout clothing on with my running shoes. The workout clothes made it through the entire day in fine form. Kept me warm and dry.

Today is my day off. The only thing on my schedule is to prepare the house for the housekeepers tomorrow and to have my toes nails done later this morning. Oh, and an orchestra rehearsal tonight during an expected rainstorm.

Tuesday, January 10, 2017

New Project for IPF Patients

The rains continue. Roads are still blocked but some now have one lane free. It took almost double the time to drive over the pass yesterday morning, even though we left before the normal commute time. It was wild. Lots of trees down but no mud slides spotted. There is a pretty good storm due today but I'm not going over the pass until rehab class later this morning. I'll bet there are just a few people attending today as driving is now difficult with standing pools of water on the major artery to the hospital.

We keep checking the weather forecast for Palm Springs next week and no rain is in the mix. Thankfully!

My ILD Support Group is featuring a speaker from MonARC Bionetworks to talk about a new project for people with IPF. Per the email: "MonARC is a Patient Powered Research Network, enabling patients and caregivers play an active role in IPF research through sharing information, through dialogue with researchers, physicians, and each other, and much more." 
Interesting. If you want more information, here is their website:

Monday, January 9, 2017

Survived the Storm

The Coastal highway going north is closed for another hour due to many trees down on the road. The pass was closed for hours yesterday due to another large tree down. A major connector from the southern coast into the Silicon Valley is closed due to a huge redwood tree blocking the lanes. We are still dry and warm as the power only went out briefly, though we are surrounded by power outages. We lost no trees or fences, though there are several trees down in our neighborhood. We had no flooding.

It was one heck of a storm.

It is going to rain a bit today but nothing like yesterday. I am going to hit Trader Joe's early then spend the day with mom. There is nothing on our list of things to do.

Michael and I are beginning to choose our clothing, gather my medications and the other things we need to get away to Palm Springs in a week. We are way too excited! Something to look forward to.

Rather busy week ahead with two rehearsals, a gig, a surprise party, an appointment for mom, appointments for toenails and eyebrows for me and getting William's birthday card and gift in the mail. One day at a time!

Sunday, January 8, 2017


I slept through the storm last night. Michael told me that he was awakened in the very early morning when it sounded like the roof was being lifted off the house. The winds and the rains were blowing! Hard! Me? Snoring.

We have been up and moving since 5AM, the band of rain came through and another major one is due in an hour. We are both going to take showers, we are charging phones and computers and settling in for the day. There are flood warnings until 2PM.

But, so far, so good. All the trees on the property are still standing. We have food in the house and gas in the cars, if needed. With all this going on around us, we spent yesterday making restaurant reservations for our Palm Springs vacation Christmas present from William. The place is filled with snowbirds and we couldn't get into one of our favorite places for lunch, just an early dinner. Anna and Doug are going to meet us there for a day and a night at the same hotel. Looking ahead at the area's weather forecast, it appears it will be dry with temperatures in the mid-70s. Just about perfect.

While the storms are raging around us, my mind is picturing us sitting around a pool, walking around Palm Springs and we are even planning a trip to Joshua National Park, just miles north of Palm Springs. No doctor appointments, nothing on a schedule. A perfect get away.

Friday, January 6, 2017

No UTIs!

No traffic as I made my way up the coast and into the city for my early morning appointment at the university urology clinic. Once again, they took me early and I was out at my scheduled appointment time. I usually love that but yesterday, I was trying to kill some time before the rehab class.

The appointment went well, the UTIs are under control with Replens (over-the-counter) every three days and she added a fiber helper so I may end some of the current discomfort on occasion. She also told me that I will find that tight clothing will make my bladder unhappy and it will make me feel urgency. Such a smart doctor. We planned to meet in a year. If I do develop a UTI, we will have to consider hormone cream...I really don't want to add that to my poor prednisone laden body. I will eventually need her approval that all is under control for the lung transplant process down the road.

I made my way through the city and down to the Avenue. From the parked car, I made a phone call to the drug company, after reading an email for me to contact them, and learned that one of my eye drops is no longer covered by the insurance. Great. Then, I phoned the university hospital regarding the $2,700+ bill that is outstanding. Debbie told me that it was still under review and that the bill was marked as such so it is not past due. Well, this morning, I got an email that the bill is past due. Another phone call this morning...

The wonderful Dutch bakery called to me. It was only 9:30 but I was hungry for lunch. They have a fresh turkey salad over lettuce with beets, hard-boiled egg, cucumbers and a nice dressing on the side. I sat at the window and watched people walk by. It was so lovely to sit quietly and just drink in the world around me.

From there, I drove to rehab, sat in the lobby, chatted with a ton of people and phoned Sherman. I think he has given up. Tuesday, I am going to phone him and offer a piece of his favorite tiramisu if he comes on Thursday. His 93rd birthday is the following Saturday. If I can get him back to rehab, I think he will feel better and return to the class on a regular basis. We chatted and I got him to laugh out loud a few times.

By the time class came around, I was really tired. At home, I yawned my way through the afternoon and dinner and fell into bed by 7:30. Done.

Today, mom has her shot in her eye then we will have a nice lunch. A huge storm is due Saturday morning through the weekend so we are staying home to watch the waterworks!

Thursday, January 5, 2017

One Heck of a Cup

Oh, it's going to be a rough one. Yesterday, Michael and I went on a road trip to University Avenue in Palo Alto and I tried my first Blue Bottle Latte. OMG! I couldn't drink it all. First, it took forever as the place in an old movie theatre was packed at 2PM then, after a sip, I was hooked. A few minutes later, the caffeine kicked in...OMG!

Okay, no problem, I had an orchestra rehearsal so I could use the caffeine. After the rehearsal and lying in bed waiting to sleep at 10, 11, midnight, it occurred to me that maybe I should have had the decaf! As I watched the clock, I saw my phone ready with an alarm to wake us up at 5AM. To say I didn't sleep would be a true statement.

Within minutes, I must go into the cold and into the city for an 8AM appointment with the urology clinic. I have not had a UTI in many months but I have a few questions for the doctor. Since I have to go to the rehab class around noon, I am going to have a few hours to just hang around the other side of the pass.

I expect to take a nap somewhere today. Hopefully, it will happen after I get home after rehab. I am already dragging.

Maybe I need a cup of coffee!

Wednesday, January 4, 2017


We chose our hotel and reservations have been made for a vacation in Palm Springs in a couple of weeks. Thanks to William's Christmas present to us, we are staying in a boutique hotel right in Palm Springs where, this time of year, it is usually nice and warm. Swimming will be involved as well as a lunch at our most favorite restaurant ever. We are counting the days.

This trip is also possible because of my portable oxygen system. I am so grateful that I own an Eclipse POS, which offers continuous air. It can be used in the car, the hotel room at night and the batteries allow for movement during the day, if needed.

Now, I have to be sure to stay well by staying away from ill people and washing my hands a lot.

It was so rainy yesterday that there were few people in the rehab class. My numbers were still good and I felt energized afterward. Perfect! Just what I needed to face the pile of paperwork to file and prepare for the tax accountant. After over two hours, I finished feeling that I finally got a major job done.

The only other problem hanging on my shoulder is with the bill from my university hospital. They are dealing with Medicare trying to figure out my Medicare Set Aside Worker's Comp agreement but I haven't heard from them. I will make the phone call this afternoon to get an update.

Today, Michael and I are hanging together as I have a hair appointment at 10AM and he has his shave and a haircut at noon. I need to make appointments to get my toe nails done and my eyebrows waxed for our trip! Oh, the joys of maintenance!

Tuesday, January 3, 2017


Mom and I took Michael to lunch at the Chicago-style restaurant we tried last Friday. He said he felt like he was back in the Windy City. The food was very authentic. We had lunch after driving mom to a mall where she returned a gift to JC Penney, bought some socks and chatted the entire time. She was so surprised that Michael came with me for the day as she adores him. He kept making her laugh, and that's a good thing!

Today, it is back to the rehab class but I need to buy birthday cards first thing this morning. My brother, Sherman, Else (with her new lung transplants from rehab class) and our son all have birthdays in that order. I thought I would tease 93-year old Sherman by sending three cards, a few days apart. The final one will be sweet and nice while the other's, not so much! 

My brother is going to get the "coloring book" he sent to me for my birthday. "Cats with Hats." We have agreed that he has to color a page, sign and date it before giving it to the next birthday person. His wife! This thing is going to spend a lot of time in the mail but will be fun to see through the years. 

We just received an invitation to attend a four-hour meeting of representatives from all the Boards at my university hospital. They want a discussion, our opinions and lunch is included! We're in! I am looking forward to this.

I am also awaiting a phone call from our son today regarding his Christmas present to us. He offered a choice of four very swanky hotels in the Palm Springs area, we chose two (the least expensive) and he will be making the reservations at one of them today. Hopefully, the rains will pause and we can enjoy the magic of the Coachella Valley in mid-January. What a very kind, thoughtful, expensive (!) gift!

So, into rehab I go. Exercise!

Monday, January 2, 2017

Into the New Year

No more Christmas. It was packed away into many boxes in the attic awaiting next year. It was rather sad and the house now looks normal, not festive. We worked most of the day, had a fantastic dinner of roasted chicken, a salad and Michael had a baked potato, a rare event.

I thought today would be a normal Monday. I didn't know it was a holiday until I turned on TV and noticed the Rose Parade was on at 8AM. The problem is that I am to meet with mom for the day so, Michael is going along with me and the three of us will hang out for the day. She loves having him around as it changes our routine for the better. He makes her laugh.

The only thing I still need to do in the new year is to organize my paperwork, enter data for taxes and create new files for 2017. Everything else is done. Every bill is paid and I feel like I am starting the year with a fresh start. I love that feeling.

I have been using my oxygen around the house more often, especially while working on dismantling Christmas. It even helped while preparing dinner. The inhaler seems to be key so I try to remember to use it more often. The coughing has really subsided.

Another fun day ahead. Guess the holiday fun continues!

Sunday, January 1, 2017

Jumping into the New Year

Happy New Year! 2016 flew by. Months ticked away so very quickly and suddenly, it was done. I vow to appreciate everyday this year, even it if begins to slip quickly through my fingers.

2017 should be an interesting year. I often wonder if next year at this time, will I have gone through a lung transplant? Probably not unless I get a bad bout of pneumonia that kicks me into the process.

For the first day of the new year, we will be returning Christmas to its boxes and into the attic. Checks for bills will be written and readied for the mail. Checkbook balanced. Life begins anew.

Last night, we walked across the cul-de-sac to Lisa and Mike's and enjoyed their company. There were three couples and it was amazing to learn that Lisa had maintained a friendship with each of the women since grade school or high school. Really nice people. We stayed only for a couple of hours before they served a fantastic smelling dinner. We wanted to be home. I stumbled into bed around 10PM and Michael followed around 11PM. In the middle of the night, we both woke up, kissed each other for the new year and fell back to sleep!

I so hope your New Year began well and will end well. We will get through another year together. We will learn a lot about our illness and ourselves. We will eat well and exercise.

Here we go.