Thursday, August 31, 2017

Rehab Class

The blood test was a piece of cake yesterday. Commuter traffic was nothing, which now makes me think that tons of people are taking the week off before the holiday weekend. Even the parking at the hospital was a breeze. There were a lot of things I needed to address at the house so I spent most of the day at home. No nap! No time!

We are both looking forward to our celebration weekend, beginning tomorrow. There is a beautiful little former artist community built on a hill down to the ocean, Carmel-by-the-Sea, Clint Eastwood's home town. I have been going there with my parents since the 1960s and it has really changed through the years. With the Aquarium being such a smash hit in the neighboring town of Monterey, Carmel has been reduced to a lot of jewelry stores and art galleries except for the original bakery. Oh yum! There used to be an amazing Mediterranean market and funky stores, old book stores, head shops in the 60s, record stores and always amazing food. We are going to eat at a little place we found the last time we were there. It is impossible to get a table for dinner so instead, we will arrive early for lunch.

It is more about the beautiful drive down the coast than the destination. And being together.

But first, the pulmonary rehab class awaits today. Richard has not attended in many weeks. I worry and miss him. On Tuesday, I was standing next to Bob, who is listed and waiting for "the phone call," when his cell phone began to ring. He grabbed it and said, "No, not it." I asked if his heart raced every time the phone rang. He nodded and almost whispered, "Every time."

Wednesday, August 30, 2017

Into the City

Everyone else seemed to phone yesterday but I didn't hear from my nurse friend in the Lung Transplant Clinic. I will phone again on Thursday, if we don't connect sooner. Lot of running around before the rehab class but it was so worth it! My numbers were fantastic: 97% on 2 liters of O2 on the bike. Really good for me. It was so surprising as I was yawning and ready for a nap the entire time.

Later in the afternoon, Leslie suggested that I didn't need to attend the Irish Fiddling rehearsal as I am not playing the next two gigs. Thank you! I was in bed, asleep by 7:30PM.

This morning, I have to have a fasting blood test at the lab between 8-10 for my endocrinologist, which means a long, commuter enhanced drive into the city. While I am there, I am going to swing by the volunteer office to get my official volunteer badge after jumping through a ton of hoops. The hospital wanted our board to be under the umbrella of the volunteer offices for security reasons. I get it.

Tuesday, August 29, 2017

Questions Regarding Lung Transplant Process

It was a long day sitting in a dealership in the Silicon Valley yesterday while we waited for five hours of work to be completed on mom's Mini Cooper. We had fun with the salespeople around us as we played a vicious card game of Shanghai. Everyone came by to ask who was winning. (I won both games. A rare event, indeed!) They offered to shuttle us over to a mall, we thought we would do some shopping then have some lunch but, as it turned out, we just enjoyed a long lunch, laughing and talking the entire time, before the little Mini Cooper shuttle came to fetch us. After a few more hands of cards, the car was ready about an hour early.

Michael was home, I made a quick dinner and we both found ourselves dozing on the new couch before stumbling to bed around 8:30. I think we are still recovering from our weekend company. Michael's sister Anna phoned before dinner to ask when they can visit for a few days. They are ready anytime as it was 110 degrees where they live. The ocean breeze and fog sounded good to them. Still recovering from the other guests, it was probably not the best time to have to think about more company. We are waiting to confirm the date that Michael and British Don will be driving to Oklahoma City, to Don's new home. It should get firmed up in the next few days then the prep for Anna and Doug will begin.

The head nurse in the Lung Transplant Clinic has become a friend since the first time we met over five years ago. I bump into her at the local mall, we talk about education of her two girls and she has helped me through the process. She left a message on my phone yesterday confirming that I will only be seen once a year and she was calling to confirm that and if I had any questions. But, it was the way she phrased it, I got the message that she was telling me not to do this. I don't know if that will make me start all over again or if I should get listed, even though I am not sick enough yet or what she was trying to convey.  So, this morning, I am going to phone her and just ask what I should do. She will be honest with me and I will pass along the information tomorrow.

Rehab class this morning! I need to run a ton of errands in town before picking Jeannie up for our ride over the pass. Tomorrow, I need to make the long drive into the city for blood tests for my endocrinologist because of a downhill slide reflected on my latest bone scan. I think I may take the opportunity to do some shopping on my own. Winter is coming and I need some ankle boots and a few more tops for gigs. Nothing expensive. As my mother's daughter, I am always looking for a good sale!

Monday, August 28, 2017

Family

A successful weekend! Shelley and Russ arrived on Saturday later than they expected but it was perfect timing for lunch! They loved the Open-Faced Ham and Cheese Sandwiches, which were baked to a melty, cheesy top over a crispy bottom of French bread. We served sliced strawberries and a Caesar Salad before bring out the gorgeous Fruit and Cheese Pizza.

After lunch we sat outside in the garden though the sun would shine for a bit before being overcome by fog. As it was going to reach 100 degrees where they live, Shelley and Russ even appreciated the fog! William has been out on tour with a new group since April and they performed on a TV show last week, so we showed them a few minutes of their performance. No William sightings as he is always at the back of the crowd working his magic with the sound.

For dinner, we took them to the seafood place right on the harbor and we were shocked that it was not packed! Yes, it was crowded but we expected it to be so much busier on a Saturday. We had a lovely window seat and they loved the food.

We all slept like babies!

In the morning, I offered yogurt, cottage cheese, strawberries, fruit and cheese pizza and Scotch eggs. Everyone helped themselves. Chat, chat, chat while the Formula 1 race played in the background, they took off after 9:00 to my mom's house for a quick visit before driving home.

It was lovely that these two spent a precious weekend with us, with no holiday involved. Just the four of us.

Saturday, August 26, 2017

Ready for Company

 I love predawn. Dark but with just a hint of a new day. A slow lightening of the sky against the shadows of the hills and trees. Quiet. Peaceful. The hope of the new day and the continuation of life. Today is a special day as we are welcoming my niece Shelley and her wonderful husband Russ for the weekend. They were just married in May and it is a rare event that we have them to ourselves. She just was given a huge promotion so I can't wait to hear all the details!

Skinny jeans. I discovered them earlier in the year and now my baggy cords seem old-fashioned. The summer was fine with my white skinny jeans but winter is coming. Mom and I went to Nordstrom yesterday and found one pair of black jeans and two pairs in a lighter fabric in brown and a dark green. All skinny jeans. All at a really good price!

After I got home, I worked in the kitchen for three hours preparing as much food for today as possible so I don't even have to think about making anything. I can enjoy our guests. Scotch Eggs, slices strawberries, butter with onions and German mustard for the Ham & Cheese Baked Open-Faced Sandwiches for lunch, and the Fruit and Cheese Pizza (see photo). All done and waiting in the refrigerator. We made dinner reservations at the seafood restaurant near our house right on the harbor.

I hope to still fit into my new skinny jeans by the end of the weekend!

The upside of shopping and being on my feet cooking all afternoon was that I slept really well last night. I have been in a pattern of sleeping for five hours then awake for over two hours then a bit more sleep before we have to begin our day. I often feel as if I need a nap and, if home, I will suddenly fall asleep sitting up on the couch, usually in the morning. Thankfully, I am filled with energy this morning. It is amazing what a good night's sleep with do.

Friday, August 25, 2017

Bony Issue

Today, we continue to prepare for our weekend company: food shopping, food prep, window washing and flowers to be cut for their bedroom. But, within minutes, I need to shower and get out of here to food shop on the other side of the pass before seeing mom for the day. We have no plans but I am sure we will have a nice day together. Shelley and Russ will swing by her house on their way home Sunday.

Later this afternoon, I need to make Scotch Eggs for their breakfast on Sunday along with yogurt or cottage cheese or waffles or eggs, if they wish. Then, I want to surprise them by making my famous Fruit and Cheese Pizza for dessert. No shame in having dessert with breakfast!

Rehab class was fine, my numbers were really good and I felt like I got a good workout. My fractured knee, which was supposed to be healed by now, is bothering me a bit. It is swollen and tender. Since getting the phone call from my endocrinologist a few days ago, I worry that has not yet totally healed. He reported that there was a major downgrade on my recent Bone Scan so I need a special blood testing then a phone conference with him. Prolia is probably going to be suggested to help stop the downward spiral. I knew it would come one day as I am on such a limited diet and have been on prednisone since 2005.

It was thrilling yesterday that I was finally able to make an appointment for the last test I needed before meeting with the surgeon regarding next steps with my acid reflux issues. He had not sent in the orders for this one important test and, after over a month of trying to have him write them, it was done yesterday.

It is amazing that all my hanging problems have resolved except for one. So satisfying.

Thursday, August 24, 2017

Home

I was able to work out in the gardens yesterday afternoon and shaped many of the Fortnight Lilies and other plants. It felt great to move around. Our Board at the university hospital has been asked to join the hospital's volunteer program, which involves everything from interviews to a background check. It is a lot of paperwork. Yesterday, I got bogged down with it after the required viewing of a 30-minute video that did not register that I had seen it. Emails back and forth resolved the problem and I was able to move forward to the background check. Oh my goodness! What a lot of paperwork to get through but I got it done. We later completed Michael's application as well so now we have to wait 3-5 days to be approved. Once that happens, we are asked to wear badges with our photos on them while we are campus. It actually is a wise security move but what a lot of time and effort to get it done.

Housekeepers are due this morning while I am at Safeway. We need groceries for the week as well as lunch and breakfast for Shelley and Russ this weekend. Reservations have been made at a local restaurant right on the water for Saturday night dinner. Simple and easy.

The pulmonary rehab class is calling to me and I want to have another good workout today. It still feels so odd not to have Dick and Sherman with me and I miss them dearly. No one to tease. Not a lot of laughs. My friend Richard has not been to class, I am deeply worried about him as he had been losing weight and I worry he doesn't have enough if he becomes ill. The RNs contacted him and told us that he plans to return to class. With the HIPAA laws, that is all they can tell us.

It felt great to be alone yesterday, I picked up the house, worked outside, dealt with the massive paperwork of the volunteer packets, made the shopping list and gathered my strength. A good day off.  I never left the property. Back to the world today.

Wednesday, August 23, 2017

Hanging Problems

A day off! I have NOTHING I have to do today! With Shelley and Russ coming this weekend, I am thinking about taking the hand shears to shape a few bushes and clean up some lilies. Also, it is good for my body to move around everyday.

Yesterday was non-stop. I had about six hanging problems so after the UPS Store and the bank to pay a bill and put the new-found Deed of Trust into the safe deposit box, I sat on the phone and made the calls. First up was a call to the doctor's assistant as I am still waiting for the doctor to put in orders for the fluoroscope, called my university hospital about a bill I received then called Medicare to ask why they did not pay the bill then called my university hospital back to tell them to resubmit it, messaged my niece about where they want to go to dinner on Saturday and finally messaged the woman in the hospital waiting for a lung transplant. She is doing well, the 6-minute walk test was not good so the doctors were meeting to assign her new number on their transplant list. Things are moving forward and I so hope she has new lungs soon.

Jumping into the car, I picked up Jeannie and we headed to our pulmonary rehab class, my first time back in two weeks. My numbers were actually excellent, which was a nice surprise. It felt good to workout into a sweat and I so enjoyed talking with everyone!

Home again, I drifted off for a 45-minute nap, jumped up to heat up leftover meatballs for dinner and we ate before Dave arrived at 5:00. He is the guitarist and singer of the Irish Fiddling group. A brilliant, creative, spirited human being. He had written a new song but wanted to work with the bass part first before presenting it to the rest of the group. It will be easier for him to explain it to them with just the two of us playing it and they will be able to create their parts to fit in. We had fun and Michael really helped with suggestions from the other room.

By this time, I was really dragging and exhausted. Dave told me that if I wanted to skip the rehearsal, they could rehearse for a gig in a tiny spot featuring just the violins and his guitar. My bass would never fit into the space. I was soooo very happy to skip the rehearsal.

At 6:35, we said goodbye to Dave, Michael had to run over to Mark's house so I found myself in bed by 7:00. I never moved all night and finally put my feet on the carpet at 6:30 this morning. I guess I really needed the sleep. I feel so much better.

Tuesday, August 22, 2017

Fancy Dinner

And the non-stop fun continues. All this fun may even kill us! We arrived right on time for a long held reservation to the #1 restaurant in San Francisco. The traffic was brutal and I felt a bit beaten up when we arrived. The moment those doors opened and the black and gold floors appeared, all was right with the world. The flowers! The waiters! The food! OMG, the food! I wore the fancy dress from the wedding on the Queen Mary, which shimmered under the lights.

Don (photo above) arrived via Uber and the fun began. The Amuse Bouche was a just a couple of spoons of a fruited cold soup with a bit of lobster. Delicious! What a beginning. We all moaned while enjoying the torchon of pate, I had a very small portion of lobster while the boys had duck breast with a delicious duck hash. This was followed by cheese for me and two fancy desserts for them. We waddled out of there after almost three hours and took the long way through the city to drive Don home.

What a night.

Before I even got home, my stomach was demanded to know why I was suddenly eating all this rich food, though not in any kind of quantity. By the time we got home, I was not feeling well and was up for over an hour until we remembered Pepto Bismol. Relief!

Today, it is back to pulmonary rehab after being gone for two weeks. It is going to hurt but it will feel good! I also have a list of things that need addressing: connecting with the woman in the hospital waiting for a lung transplant, connecting with my niece about her visit this weekend, calling the assistant to the surgeon to ask for the third time for a test he forgot to order, Medicare did not pay for a doctor's bill so I have to deal with that and the singer from the Irish Fiddling group is coming to the house at 5PM to work on a new song with me. He has a vision of my bass part but can only hum it. We will figure it out before we join the others at Leslie's house for the full rehearsal at 6:00PM.

It is going to be another full day.

Monday, August 21, 2017

No Eclipse for Us

Fog is everywhere mom and I will be today so no eclipse for us! Enjoy it, if you are somewhere where it will be visible. What a treat!

It turned into a really busy weekend. I attacked my filing cabinet, went through every file, set up some new files and shredded three bags of paper and old insurance bills going back five years. I found a sweet card Michael gave to me while we were dating, our Dead of Trust for the house (which should be in the vault at the bank!) and sweet letters from my dad and a few from my brother. That took most of Saturday afternoon and Sunday morning. British Don was due on Sunday, I forgot to buy the marinara sauce for my low carb meatballs for dinner so I was out of the house to the store very early Sunday morning. Michael and I both got a lot done around the house, took a brief nap and welcomed Don around 3PM. He worked on some of my computer problems and our Apple TV problem and solved them all. A true genius! The moment after he left at 8PM, I was in bed.

Tonight, we will be with Don again as he is hosting a goodbye dinner with us at the #1 restaurant in San Francisco. He will be moving to Oklahoma City next month. This restaurant is a big deal. I will try to take photos of the beautiful dining room and gorgeous food. Reservations are difficult but we were able to nab this early Monday evening slot. So, it is going to be a long night. We both don't feel fully recovered from our road trip a week ago as it has been such a crazy week. Tonight is the last of entertaining until Saturday when my niece and her husband are coming for the weekend. We are beginning to gear up for them.

Enjoy the eclipse!

Saturday, August 19, 2017

Funny Then Sad

I am dragging. Mom and I had one of those funny days yesterday. Everywhere we went, everything we did, everything we said was just funny. We laughed all day, even after her shot in her eye to slow down macular degeneration. We went to Nordstrom for lunch where the gorgeous manager greeted us, I told him it was the day after mom's birthday and he sent over a big piece of dark chocolate cake after a hug for mom! Oh my! We were trying to be so good! It was the second day in a row where chocolate cake was involved! Every single person who worked at the cafe came to our table to wish mom a happy birthday. She was just glowing.

This was after the morning appointment at her university eye clinic where people kept coming into our room to wish her a happy birthday. Before I dropped her off at her home for the weekend, she remarked that she felt so loved and part of a community, instead of an anonymous person in a big city.

I arrived home to find that Michael had completely trimmed and cut the yards and even watered! One creepy thing happened for the first time. As he opened our huge umbrella on the back patio, he noticed something inside. A small rat? Nope! He grabbed the hose and shot it with water and was totally shocked when the bat opened his wings and flew off! It was pretty big when its expanded its wings!

But, our focus was now on the Celebration of Life for the wife of the owner of the restaurant right on the ocean with its fabulous crab sandwiches. It was at the harbor here in town and about 200 people were invited. It was beautifully done and very sad and sweet at the same time. What was a treat, though, is that the teacher who taught our William how to play the bass and really is the reason he was able to get a job in the music industry was at the celebration. He was asked to perform with the private high school's chorus as part of the ceremony. He has been following William career and I once again told him that HE was the reason that our son was doing so well. One teacher really can make a huge difference.

We left before the very end to rendezvous with Jim and Kathy at a fantastic restaurant at the harbor where Jim surprised the young couple and her parents next to us by buying their dinner. They didn't find out until after we moved to the bar area where we met Sharon and Bob (his brother was the last funeral we attended) who were just being served dinner. We stayed until almost 10:00 when I finally dragged Michael home. He could have stayed all night!

I fell into bed and really don't remember anything else. I was past exhausted. Today, I will probably plan a nap in the morning then I need to attack a pile paperwork in need of filing. A quiet day. Thank goodness!

Friday, August 18, 2017

Celebrating Life


Mom was dressed up and ready when I arrived with a huge bouquet of flowers to celebrate her birthday yesterday. We chatted for a couple hours, I shared all the wedding photos with her before Michael arrived to drive us to her special luncheon.

She chose a restaurant near her home that had a rather colorful history. It was built in 1915 as part of the Japanese Exhibition at the Panama Pacific International Exposition in San Francisco in commemoration of the opening of the Panama Canal. A land Baron bought the building and had it barged down the bay to Belmont where he and his family lived for three lives. Later, mules and horses hauled it up the hill where it currently sits, overlooking the bay. It was sold and later became a speakeasy during Prohibition and a known gambling spot plus rumors of business upstairs, so to speak. It changed hands again in 1945 and became an Italian Restaurant and is currently owned by the family of one of those two partners. Through the years, Michael and I have bumped into members of the 49er football and Giants baseball teams having dinner at this historic place.

They treated mom like a queen. Chocolate was involved! She later thanked us for making her birthday such a special day.

In other news: I heard from the woman waiting for a lung transplant that her transfer to the university hospital happened as planned excepted that her lung collapsed again. The poor thing! That is so painful. She is scheduled for a 6-minute walk test today and that will determine the change to her listed number for lung transplants. Just being in the hospital will help her jump up the list but if her 6-minute walk test is as horrible as I think it will be, she might zoom to the top. Sending good thoughts her way.

Thursday, August 17, 2017

Happy Birthday to Mom

Happy 89th birthday to my mom today! Amazing. Will post photos tomorrow from our birthday luncheon. She looks and feels great. The exercises she learned in physical theory earlier in the year have made such a difference to her balance and gait. She feels more confident when she walks and has not tripped or fallen since the exercises. Knock wood!

I had yet another Bone Scan yesterday. Every other year, Dr. M. wants to check the damage that my ongoing prednisone intake does to my bones. So far, so good but I never know. Having my first fracture this year is not a good sign. Speaking of which, my poor knee revolted yesterday after working out hard on the treadmill two days in a row. It was so sore yesterday evening and even swollen. I will not workout today but may take it a bit easier tomorrow.

And we had one heck of a good time at the brewery while playing Irish, Scottish and a bit of Bluegrass music to a packed house. On a Wednesday night! Our neighbor Rick and his daughter Melanie also drop in to visit with Michael and listen to part of our gig.

No word from the woman waiting for lung transplant in a hospital after a lung collapse. She was to be transferred yesterday to a university hospital where she is listed. I plan to text her today to see if there are any updates.

Michael mentioned to me that he was wondering when our lives were going to slow down. We are totally booked through mid-September. Every day there is something. For two retired people, we have quite a schedule. Mine is filled with doctor appointments, both mom's and mine. Soon, Michael's will be added to my calendar. He begins Medicare on September 1st and I know they will want a few tests as part of his first checkup. It is going to get crazier.

I am really considering not playing with the orchestra anymore. It really depends on the chosen music for the first concert. If it is not exciting or something that is fun to play, I may pass.

Wednesday, August 16, 2017

Hospital Call

At the wedding, Daniel's wife Kristina asked if I could speak with a friend of hers who has been listed for lung transplants for a year. Of course. Yesterday, she texted that her friend's lung collapsed on Monday and was in the hospital. She gave me her phone number and I called her.

What a woman. A single mom of a young child, she was very short of breath and still in pain from the collapsed lung. She was in the closest hospital to her home so they could inflate her lung but was expecting to be transferred to her university hospital today, where she was listed for a transplant.

I asked her diagnosis (Scleroderma) and what was the issue that had slowed down finding lungs. She was a small boned woman and the lungs that would fit her were going to children. It sounds strange but having this collapse lungs move the lung transplant process forward as she is now in the hospital so her number on the transplant list zooms to the top. It's actually good news. She started to cry with joy. I asked if she had a support system in place and learned that her sister was sitting at her bedside.

In California, there are no patients on ventilators waiting for lungs. Her chances of getting the next appropriate size and blood type of one or two lungs improved with her hospital stay. I didn't want to overtax her, told her phone me anytime night or day if she had any questions or needed help.

Later, I got another text from Kristina who told me that this young woman said that I gave her hope for the first time in a long time. I hope one or two lungs will be available to her soon.

Tuesday, August 15, 2017

Birthday Party and a Wedding

We are home! What a wild few days. It began with the surprise party for Jill on Saturday evening. It was one heck of a luau! We were blocking the road with banners and 50 balloons when the birthday girl arrived to celebrate her 50th birthday! Her sister and brother-in-law really know how to throw a party! They even built
a small Tiki Bar in the backyard and he made very strong cocktails! The food was catered with Hawaiian pork, chicken and lots of other goodies. They even served spam sushi! A friend made gorgeous cupcakes and sand dab sugar cookies as party favors. It was a lot of fun!

We only stayed until 8:30 so we could get enough sleep to hit the road by 5AM Sunday. The wedding. Maddy and William (Anna and Doug's son) were being married on the Queen Mary in Long Beach at 6:00PM. We had about six hours of driving ahead of us. It was a piece of cake. We arrived, checked in but discovered that there was a concert just outside the Queen Mary and that the hotel, which we chose to stay because of the free shuttle to the ship, was not offering shuttle service because of the massive concert traffic. We had made a nice connection with the front desk person and she asked how we felt about a golf cart! Brilliant! So right at 5:00, we hopped onto the golf cart, passed all the cars and the police and the fire department and arrive to the Queen Mary.

Up on the third floor, we walked the length of the ship on its old, very slippery wooden deck. It reminded me of the bowling alley where I slipped and fractured my knee so Michael had a first grasp of my arm as we slowly made our way to the wedding site.

It was gorgeous. The weather was in the 70s, so rare for this time of year. It is usually very hot. It was outside, the theme was fitting for the ship as it was flapper style, 1920s. The bridesmaids dresses were sequined and shimmered in the sunshine. The men were dapper. The music was glorious, all 1920s.

There were only about 70 people attending the wedding so it was intimate and lovely. William's brother Daniel was the officiant and hilarious. When they said their vows, there were a few tears. This couple will be together for the long haul.

We left around 9AM Monday morning for a longer drive home. We made our way north on the Pacific Coast Highway, which was packed with traffic in areas. We even found this sign! Read the sign just above Olympic. It is the beginning of Route 66 in Santa Monica!! We made our way through Malibu and other coastal areas before connecting with Highway 101 near Oxnard. We loved going through Santa Barbara, San Luis Obispo, King City, Salinas before sneaking back to Highway 1 just south of Santa Cruz. From there, we were only 45-minutes from home. Traffic was light the entire way. We made it home by 5:00, not too bad.

It felt like we had nice road trip, though it was short. Today, I am working out and doing the food shopping. Back to life.

Friday, August 11, 2017

Transplant Appointment

I went into the meeting with the doctor who began the lung transplant program at my university hospital feeling stronger. The PFTs went better than I had expected. My FVC went from 41 to 47 and my DLCO was up almost a point from the test three months ago.

He walked in the door and said, "I know you!" I explained how I was a speaker at a continuing education program for doctors that he was teaching several years ago, that I spoke at the American Thoracic Society's international conference about five years ago and that I sit on one of the patient boards. He reviewed my PFTs and my file and said that I was basically stable. I looked really good. He then sat back in his chair and said, "You aren't going to have a lung transplant anytime soon. Really, how often do you think you want to check in with us?" I was thrilled and replied, "Once a year?" Done.

Walking to the elevator, I made a vow that I have to get back to exercising everyday so I can bring my stamina back up. I want to feel fit again.

Between the PFT and the appointment at the Lung Transplant Clinic, I dropped off the Xray of my hand to the gentlemen at the desk of the Rheumatology Clinic deep in the basement. While getting a cup of coffee to take with me to wait for the appointment at the clinic, my phone rang. It was the Rheumatology people. They had no referral. I had dropped it off over a month ago and, thankfully, the woman used to work for the pulmonary clinic and knew me by name. When I told the woman on the phone that I gave it to the woman who used to work in pulmonary, she told me she would try to find the referral.

I never got another phone call.

So, after the visit with the Lung Transplant Clinic, I wandered back down to the basement where I was waiting in a line to see another woman at the desk, who was working with another patient. Suddenly, Christine (the woman who took my referral) walked into the waiting room, spotted me and came running over. "You caused quite a stir this morning," she said. While speaking with her, she tried to phone my primary to get a copy of the referral but they were out to lunch. She promised to follow up and phone me.

She saved me. I kept thanking her.

While in the car driving home, she phoned. Contacting my primary, they faxed an entire packet regarding my gout diagnosis to her and it was now in my files. She said they had what they needed for review and they would be in touch with me to make an appointment.

Check. Another worry off my list.

Thursday, August 10, 2017

Lung Transplant Clinic Appointment Today

The meeting with the former head of the pulmonary program at my university hospital is this morning. I am leaving home at 6:45 to make it to the 8:30 pulmonary function test before I talk things over with the good doctor.

It should be interesting. We will see if my numbers continue to fall due to the acid reflux issues. 

In other news: I continue to check off my to-do list in preparations for the wedding in Southern California this weekend. My hair was cut and colored yesterday. We also met at the store to pick out a new sofa, which will be delivered on Saturday. Done. I have a few things to do after my appointment today but I feel like we have move forward on many levels.

Wednesday, August 9, 2017

Contact

Yesterday, I was rather surprised when I stepped on the scale at the nutritionist's office for the first time since January only to discover I had gained three pounds! Horrible! Well, it just has to come off immediately. What works for me is to write down every mouthful of food and calories attached to all meals and snacks. It is a good reminder to be more mindful and not to guesstimate how many calories I am eating. It will be gone soon!

I rushed home, told Michael then began to worry about whether my new dress would fit well enough for the wedding on Sunday! I tried it on and all was well. It looked fine. Good, in fact. Huge sigh of relief.

Once again, I was told that a person from the sofa company would be phoning yesterday, no one phoned so I called them back again. I got the same person I spoke with previously, he sent yet another urgent message to the warranty department to contact me and I only had to wait about twenty minutes before I finally heard from a person who could help.

Earlier in the morning, I had taken photos of the sofa's center support sitting on the floor and the gouges into the hardwood floors. She asked for these photos and I sent them while she was still on the line. It turned out that they may not even have the sofa in stock anymore and we agreed that we would go into the store to get a credit on our sofa and buy a new one. After my hair appointment today, Michael and I are going to meet over the pass to pick out our new sofa. It's too bad this one didn't work out as we really liked it.

Michael had been trying to get in touch with the insurance guy to complete his claim when his parked car was hit. It has been frustrating but they finally made contact with each other yesterday and repairs should begin soon.

It was contact day for us both, sofa problem for me and car problem for Michael. It was a good day!

Tuesday, August 8, 2017

Just a Check-In

I have now noticed a correlation between the acid reflux and my ability to get a good night's sleep. The past two nights have been rough. Around 12:30, I awaken then just can't get back to sleep until around 4AM. With lots of coffee, I made it through yesterday but I don't think I will be that lucky today. I am feeling tired and could drift off to sleep right now.

But, I have to drive deep into the city to meet with my wonderful nutritionist this morning. Last night, I went through my recipes and lists of what I have cooked for three weeks and will bring them along with me. He loves my easy, low carb, low fat recipes. He will often take a copy of them to share with his other clients who are struggling to find appropriate things to cook.

I can't believe that it has been seven years since he led me through the three months of a liquid diet then helped me with my current low carb, low fat diet. Since my prednisone filled body does not process sugar properly, it is a rather strict diet of protein and non-starchy vegetables. But, it has worked. Currently, I am almost twenty pounds lighter than when I came off the liquid diet. He had warned me that I would probably gain weight when I returned to food but I was determined not to allow that to happen. He never expected me to continue to lose weight.

What do I think keeps me honest? Every week, I actually troll through my recipes, make a list of breakfasts and dinners for the week, make a shopping list, buy the protein at a good butcher shop to get exactly the amount I need and good quality then finally I make sure that there is never any junk in the house. Ever.

He told me at the last meeting that I clearly will not be gaining the weight back as I have been in a good routine for many years. My body is used to this weight but I still want to meet with him every 4-6 months to keep me honest.

Our appointment is like visiting an old friend who helped me when I really needed him.

Monday, August 7, 2017

Feeling It

I actually felt pretty good yesterday, considering the late night gigs, medical test drama and our company. As I move around this morning, the past is beginning to catch-up with me. I am really dragging but, there is no time to recover as I need to drive mom to her post-op appointment at the eye clinic mid-morning. Up and out.

With all the changes to our normal schedule, I am a bit concerned that I might get sick before the wedding next Sunday. I have so much to pull together before we hit the road and we will be taking a new portable oxygen system with us, which has a plug for nighttime use and one for the lighter in the car. I hope I don't need it, other than at night.

Tomorrow, I am seeing the nutritionist for the first time since the beginning of the year. After I learned I had a fractured knee and was told not to walk on it, I had to cancel an appointment with him. We finally get to have our check-in together, I feel my weight is the same or maybe even a bit lighter than the last visit. It will be good to see him.

While our neighbors Ron and Susan are in Hawaii, he asked that I pick and enjoy his tomatoes and lettuce and broccoli rabe. But, what really is exciting, is that he has a large area of raspberry bushes with the sweetest berries ever! I will be wandering over there this afternoon and will bring the goodies home for dinner. All organic! Best neighbors ever.

Sunday, August 6, 2017

...And a Bit of Dancing

British Don is moving from SF to Oklahoma City in September and Michael has been making sure his Porsche is up for the road trip while he was in Europe. It was ready to be picked up from our house yesterday so Michael brought him home and he was so happy when I served some appetizers and a very light dinner. Home cooked food. Yup. I was able to pull it together, showered and dress for the night's gig and we so enjoyed a couple of hours with him.

Dinner, dishes then I was off to the Irish Fiddling gig in a Wine and Cheese store in town. It is usually an elegant venue, fantastic sound due to the old wooden floors but the town was flooded with tourists all hanging around until the traffic cleared so...the place was packed! And loud! Children were not allowed in half of the store where there was a wine bar but they could hang out with us at the other end of the store. Kids came in and danced! It was so much fun playing for them, the moms were dancing with them while the dads were taking videos. Love when that stuff happens. The whole place cheered for them.

I was tired when we started playing at 6:30 but I was exhausted when we ended at 8:30. Michael packed all my equipment and instrument in the car and we had sugarless Popsicles after we unloaded the car at home before passing out in bed. I slept so well.

Today, we are planning to go to lunch. That's it. I will be napping, too!

The week ahead is going to be a very challenging. I feel like I need to tightening my seat belt and get ready to blast off. I am not quite ready for it, will need to adjust to keep things fluid but I hope it all settles in. It begins simply tomorrow with mom's post-op appointment from her eye surgery. Should be easy enough...let's hope!

Saturday, August 5, 2017

Sensor, Family and Music

Bless my sister for driving over the pass early yesterday morning, probably for the first time since we were teenagers, to take my mom to sign papers to change her will. At the same time, I was driving north into the city for the appointment to remove the acid reflux sensor from my stomach after being installed 24 hours earlier. She and mom had some time alone together and I think they both enjoyed it.

In the meantime, the plan was for the boys to take a walk along the ocean but IT WAS RAINING! It never rains in California in the summer. Ever. It was a tropical storm so it was warm and muggy and so much of what my sister and husband came to escape!

Right at noon, the lovely technician remove the sensor within a minute. She had me hold a piece of gauze under my nose and told me to take a long, slow inhale through my nose. She pulled it right out. It was no problem, no gaging, no shivers up my spine! It was such a relief to get rid of it. I zoomed back down the more difficult freeway past the airport to meet everyone at the Cheesecake Factory for lunch. It was so much fun! Mom looked so happy being surrounded by family.

I drove mom home, Lee and Jeff drove back to their hotel for an hour, Michael drove our other car and we decompressed for minutes. It was time for the Irish Fiddling gig. I barely made it on time, my family stayed and listened for the first hour before I threw them out to meet me at the fish taco place in an hour. They had cocktails! And appetizers!

We had a lovely fish taco dinner then sat and talked afterward before saying our goodbyes. They are leaving sometime this morning to head back to the heat. British Don is back from his trip to Europe, we have to give him back his car so Michael is bringing him home this afternoon. He may stay for the gig this evening.

The schedule next week is totally nuts. Booked. Everyday will a challenge. I am hoping to use Sunday to gather my strength to survive it all. I just can't get sick for the wedding next Sunday.

Friday, August 4, 2017

Up My Nose

It was rough. I loved the woman who ran the 24-hour ph study for acid reflux and she needed all of her experience and skills working with me. First, she squirted numbing gel up my left nostril, which helped numb my throat. After lubricating the larger cord, she tried to stick it up my nose, down my throat and into my stomach while I sipped water through a straw. Nope. Not going to work. It kept coming back into my mouth, which caused my gaging reflex and eventually I vomited up all the water. We tried it three time.

She switched to the right nostril. Numbed it. The darn thing slipped right in, down my throat, past my surgery site and into my stomach on the first try. Apparently, there is a problem with my left nostril!

Once it was in, I had to lay down at a 30 degree angle and sip a specific amount of water every minute ten times without swallowing any other time. No problem. Then, I sat up and she pulled the cord out while asking me to cough.

The whole process was very uncomfortable.

But wait! There's more! The reason for the first cord was to measure where to place the second cord attached to a computer to monitor my acid reflux for the next 24 hours. It was time to stick the smaller cord up my nose and into my stomach but since it is smaller, it could get tangled and not break through my surgery site. Thankfully, it was in the first try.

My nose and sinus area was sore and aching, the cord down my throat made it dry and irritated and it was really not a lot of fun.

After the cord was in, she attached it to a small computer, which was to hang across my body with buttons to push when I take medication, food, sleep and cough or burp or...

I drove home to welcome Lee and Jeff, who were here on the coast to escape the horrible heat where they live. I think they brought the hotter weather with them! It was warmer than expected and muggy! We chatted then I took them to the brewery where I have played with the Irish Fiddling group because I knew Jeff would like the amazing beer. We then took them to a fantastic fish restaurant right on the ocean for a perfect dinner. I really didn't want to eat but needed to so I could produce acid reflux. I had my favorite Monterey sardines over vegetables but Michael had the huge Lobster Roll. Lee and Jeff loved it and they had pasta and fish dishes.

They are due here in a hour, Lee will be heading to our mom's to take her to see her lawyer at 10:00 while Michael and Jeff take a walk along the beach. I will be hanging out here alone until 10:00 when I leave to begin the long drive into the city for my noon appointment to have them yank this cord out of my stomach. All of us are going to meet at the Cheesecake Factory near mom's for a noon lunch, except I will be a bit late but will get there as soon as possible!

Tonight, the Irish Fiddlers are playing the organic market in town. While I am there, Lee, Jeff and Michael are going to have some fish tacos and cheesy garlic bread covered with fresh crab for dinner. Oh yum!

Thursday, August 3, 2017

Acid Reflux Test

Lee and Jeff are due for their "escape from the oppressive heat" visit sometime early this afternoon. We'll hang out in the garden, open a bottle of wine for Lee and Michael has a new bourbon to share with Jeff. They will be here with Michael before I finish my appointment deep in the city.

It is 5AM and I just finished enjoying my coffee, breakfast and Miralax as I can have no food or water from 5-11AM. After 11AM, a sensor will be installed in my stomach through my nose for 24 hours and I will have to carry an attached small computer with me, which will gather the needed information regarding my acid reflux levels. Then, tomorrow morning, I will have to drive all the way back up to the furthest campus to have it removed and the information downloaded. I am so grateful to finally have this appointment but, having done this test twice before, it is not my favorite.

Yesterday, I picked up the house, ran errands then met Natalie, Winnie and Oliver for our Back To School luncheon. It was a wonderful surprise to have Ethan also join us. These children are clearly used to restaurants as they sat properly, placed their order directly with the waitress, engaged in conversation, ate with table manners and were delightful in the process. I am so blessed to have them in my life.

Today will be a challenge as I will be exhausted from not sleeping well last night then having to drive the grueling trip to the campus to have an even more uncomfortable test before driving home to company. It will be a challenging two days ahead. Unfortunately, I also am also booked to play a gig on Friday and Saturday nights. My Sunday plans include a lot of nothing!

Wednesday, August 2, 2017

Two-Steps Forward Kind of Day

During the past month, it has felt that everything I tried to arrange or take care of business-wise just would not fall into place. One step forward, two steps backward. It has been frustrating. Yesterday, I decided to phone the woman who told me a month ago that the test which places a sensor into my stomach for 24-hours to check my acid reflux levels could not be scheduled until September or October. I had asked for both Dr. K. and the surgeon, who ordered the test, to put pressure on her for an appointment. This was suggested by the tech who did my Swallow Test. Neither doctor followed through. Two steps backwards.

I used my very "kind" voice to remind her that we had spoken a month earlier and was wondering if I could schedule the test. She replied that no, they had ordered a new part for one of the machines and no appointments were being scheduled and that, in fact, I probably would not have an appointment until November or December.

Here is what I said is a small, quiet voice, "Oh. Gosh. That must be so frustrating for you. I have an appointment with the Lung Transplant Clinic a week from Thursday and I am going to have to explain to them why I have not had this test yet. My numbers are crashing from the fumes going into my lungs. I sure would hate to need lung transplants because I couldn't get a test."

Silence.

"Hold a second," she said then returned to the me. "We just had two cancellations. What medications are you taking? Any heart medication? Any PPIs?" I replied no to both, reviewed my list of medications with her and I HAVE AN APPOINTMENT FOR THE TESTS TOMORROW AT 11:00!

I thanked her several times.

Feeling confident, I then phoned the assistant to the surgeon to find out about the other Barium Swallow test and esophageal study that the surgeon forgot to include in his orders. I had not heard anything after talking to her almost a month ago. She told me she would contact the surgeon AND write a reminder to check that he responds this time.

Also about a month ago, I received an email from our new investment firm regarding a problem with a stock I bought many years ago. The company had been bought by another company and I never received the new stock. The past month she has been dealing with their issues including Michael's incorrect SSI number on their records so they would not issue any new stock certificates. Once that got cleared up, they were going to charge a huge fee plus demanded another fee to guarantee our signature and account. My new investment company jumped through all the hoops, we had the original stock certificates so she explained that the fees should not be assessed, conference calls with me to verify that I do indeed exist and she followed every last issue to the end. As of yesterday, it too finally moved forward. The new certificates were included in our portfolio, where they were quickly liquidated. Done.

It was definitely a "two-steps forward" day.

Tuesday, August 1, 2017

Stress and Goals

Feeling the stress. Mom looked fantastic yesterday and, in fact, had a marvelous weekend. She went to lunch on Sunday with a new person at her complex even though she had surgery Friday. We ran errands, had lunch at Nordstrom before I drove home to make Cincinnati Chili for dinner. The Irish Fiddling rehearsal went well and we are ready for the Friday and Saturday evening gigs.

Stress. Thinking about my sister's visit on Thursday and all that needs to happen before their arrival.

Stress. Mom was having computer issues, which I fixed yesterday but apparently fell apart last night. She is going to the Geeks today but if they can't reset everything, I will have to drive over the pass tomorrow while trying to pull everything together for Thursday's company.

Stress. The sofa is broken somewhere, we phoned, they want photos then will let us know when someone will come to fix it or if a new one will be sent, when it is not on back order.

Stress. I have not heard a word about the one missed test for GERD nor the two tests that were "dismissed" and I should get an appointment sometime in September or October. The appointment with the Lung Transplant Clinic is a week from Thursday so I will beg for their help.

Stress. Preparations for the wedding in 13 days have yet to happen. Nails, eyebrows, hair cut...

But the wonderful moments in this mess of stress will include a lunch tomorrow with my favorite kids, Winnie and Oliver, before they go back to school and conversations with our son. Lovely. He will phone again tonight.

I am so grateful that, even with the stress, life is happening. I am participating. I am functioning. When we were going through the darkest times, I so wish I could have looked forward to now to see that I am still here. Alive. Fighting for my independence.

My personal goals are simple: I want to live longer than my mom. My death would be very difficult for her and no parent should have to bury a child. My other goal is to be alive to celebrate our 50th Anniversary together in just five years. We'll see if I can hit these goals.