Living Well with a Bad Diagnosis - Lung Disease

Thursday, June 30, 2016

A Drive, a Shock and a Test

It was a lovely drive deep into the heart of San Francisco. I even took a different way through Golden Gate Park, which is always so beautiful and a tranquil retreat in a city of traffic. With my mammogram and bone scan medical files in my purse, I walked to the medical files office only to discover I was in the wrong place! I have to take them to the Lung Transplant Clinic so they can scan them into my medical file. No problem! Heading there today!

Mr. B., the nutritionist, was shockingly running late. That never happens. When he escorted a woman to the door, he apologized and said it would only be a few minutes. Again, no problem. I was in no hurry! It was then I looked at the woman. She was young, probably in her twenties, probably around 250 pounds but was recovering from being upset. Red nose. Red eyes. Now I understood why he was running late. He needed to spend more time to work with her. I am so glad he took the time.

He called me in. I ripped off my jacket and shoes. The weigh-in. I have been so stable for almost two year, never wavering even a few ounces. Then, when I got sick earlier this year, I lost some weight, put some back on but still was two pounds light and kinda liked the feeling. It was with utter shock that I now weigh the lightest I have weighed since 1990. I am six pounds less than my stable weight of almost two years. No wonder my clothing is loose!

My BMI is still 26 but really, I can't lose anymore weight. (I have to be between 25-30 BMI for entrance to the Lung Transplant Clinic.) He told me to add fat calories and to have a nice lunch after the appointment. When I got to the car, I phoned Michael to tell him we were going to have a feast of hot dogs and potato chips for the 4th of July! Yahoo!

I need to gain some of that weight back. The problem is that when I have a lung infection, I cannot get food down. Breakfast is the worst but it gets easier later in the day. Before transplants, I will be very ill and probably not be able to eat thus losing weight. That is what Dr. K. worries about whenever I fall under my stable weight.

Today is a big day. I am going through a nasty test to determine if I need supplemental oxygen 24/7. It is not until mid-afternoon but I want to eat lunch early enough to have it totally out of my stomach as the test is on a bike. Don't want to throw up anything! With housekeepers due, liquid oxygen refills and lots of errands this morning, it is going to be a wild ride of a day.

So looking forward to a quiet day with my mom tomorrow.

Wednesday, June 29, 2016

Done, Done and Yum

Intense. In one word, that is how I would describe yesterday. I needed to do a Safeway run early in the morning before my hair appointment. I had sent a draft of a letter to my attorney and he replied with lots of changes (all amazing, which is why I love him) as I was leaving for my haircut. After a good chat, color and cut, I was back home eating a quick lunch while reviewing his changes. I made the noted changes, then we continued to tweak it until about 4:00PM. Very intense. The good news is that I think we are done. The letters will be sent today and I hope they will reply in a positive manner and quickly. But, I am not holding my breath!

In the meantime, Michael arrived home. Miserable. Banned from touching anything that could give me his cold, he sat in his chair, watched "Parent Trap" for the first time since he was a kid then the Giants game, which I don't want to think about. Not good.

Suddenly, it was time to start cooking dinner and I was still emailing back and forth with the lawyer. Wild. It was a fabulous dinner of roasted chicken with a side of Chinese Eggplant with Shiitake Mushrooms in a Peanut Sauce. By the time all the emails were sent and the kitchen cleaned up from dinner, I was so done.

But, wait! There's more!

I still had to gather my great new recipes for the nutritionist appointment this morning and stack them with my medical records (for lung transplant clinic) I had requested from my pulmonary rehab hospital. I am going to drop them off before my appointment with Mr. B. I am feeling thin. Anna and I were texting back and forth last night and we were talking about weight. She doesn't know what she weighs. I never weigh myself. If I had a scale, I would become obsessed. I can tell how I am doing by how my clothing fit. Everything is loose right now, a great sign. I only step on a scale when I see Mr. B. and it has been four months since the last weigh-in. It is now six years since I lost over 70 pounds with his help but I had previously lost thirty pounds from my high in 2006. It always amazes me that I have lost 100 pounds. That is a lot of weight! I so wish I had seen a nutritionist when I was fight my weight issues. One of the best decision I ever made in my life.

It was back to the couch for me last night. Thankfully, it is a cosy couch! Today, I will send the letters after my nutritionist appointment in a manner that I have proof of delivery. Then, the wait will begin.

Tuesday, June 28, 2016

Summer Cold

Everything fell into place yesterday. Mom and Michael arrive to her doctor appointment on time and I got home early to prepare for the phone appointment with the attorney. All was right with the world.

Michael came home with full-blown swollen sinuses and feeling miserable. He thought it was allergies.  I suspected more. Last Thursday, during the Irish Fiddling rehearsal, Leslie's husband Joe arrived home from work and she mentioned that he had a full-blown cold. Michael arrived to help me take the bass home, they sat on a couch together and chatted a bit. On Friday night, they were together again while watching our gig. Two exposures. I THINK MICHAEL HAS A COLD!!!

That is very bad. If I get it, there will be two months of misery ahead. To make matters worse, he was in a car with mom yesterday and, if indeed it is a cold, she will get it and I could get it from her, too!

The plan: I slept on the couch last night. I am washing my hands all the time. I am starting a run of Coldcalm this morning. I will bring two masks (one for her) and my oxygen when I see mom on Friday. I will keep my fingers crossed a lot in hopes that I don't get it!

The good news is that I will look great with my hair being cut and colored today and I am looking forward to a weigh-in with the nutritionist tomorrow morning.

Monday, June 27, 2016


What a lovely Sunday. We worked in the front yard, trimmed the Japanese Maple between the front bedroom windows and the other closer to the street and I finished cleaning out the very front that I had not finish on Saturday. It looks so much better! Our goal next weekend is to take out some overgrown rosemary then we can order mulch (I don't go near it!) and Michael can fertilize the grass. It is never done!

For a late lunch, we tried our first ever low and slow BBQ of baby back ribs at 220 degrees for three hours. They were great but we learned a lot. We liked our rub that we bought at a Corkie's BBQ in Memphis better than our butcher's rub and we would change the BBQ sauce to a more tomatoey sauce. Steep learning curve! We ate them picnic-style in the living room while watching the Giant's baseball game on the big screen TV. What a game! The ribs were delicious and leftovers are ready for our dinner tonight!

After the game, we did some household chores before I made some Tuscan Eggs for a very light dinner.

I have a phone appointment with the lawyer this afternoon but mom made a last minute doctor appointment around the same time. She was growing very anxious at the thought of driving alone to the appointment. It is a bit tricky. After Michael got home from over the pass on Saturday, I asked if he could drive her to the appointment? Yes, of course. We will make the mom exchange just after lunch and they will head to her appointment while I head home for mine.

Just a check-in: I am feeling so good and breathing well. I swear that the consistent movement and exercise last week is the reason. This is a perfect time as on Thursday, I will be taking a test to determine if I need supplemental oxygen 24/7. I really didn't want to go into it feeling miserable and not breathing well. Hopefully, I can keep this stretch going.

Sunday, June 26, 2016

Sorry About Yesterday

It was a regular Saturday morning, I was playing around the Internet reading my favorite morning sites, scanning through my emails and having lovely cups of coffee. At 7:30, the doorbell rang and there was Jim with bags of fresh-caught ahi tuna steaks and petrale sole. (Later, he returned with four ears of fresh-cut corn on the cob.) He joined us for a couple of cups of coffee and a good bit of local gossip while we entertained him still in our pajamas. Such fun!

It wasn't until last night that I realized that I had forgotten to write yesterday's blog!

I am breathing really well lately. I also notice that I am sleeping so much better than usual. My goal in the gardens yesterday was to trim away a lot of the plants in the very front, sweep up leaves and twigs from the birch trees and fill the recycle container. So, after blowing and watering the rest of the yards, I began. After a couple of hours, the area was only halfway done. As I worked in that crowded with plant area, I found so much that needed to be just ripped out and other parts of plants that needed to be cut away. Finally, there was more to be done but the container was filled to the brim. Next week, I will conquer the rest.

On Friday night, the Irish Fiddling group did play at the organic market and my friend Lois dropped by as a surprise visit to just listened. So sweet! We did fine but not as tight as the previous performance. The better guitarist was back but also his proclivity of noodling before and after a song was also back. I thought I had stopped it with prepared endings. The audience needs to hear when a song begins and especially when a song ends. The drifting off of just the guitar playing notes makes that confusing. There will be no rehearsal this week as two of the members are at a week-long fiddling camp high in the Sierra Nevada mountains. They will return home with new music and ideas.

Today, we are staying home all day. The fog is in this morning but should break up soon. Michael is going to BBQ some ribs for the first time ever. Baby back ribs. With Jim's fresh corn and a surprise backed potato for Michael (a really rare treat), we are going to enjoy the whole process of 2-1/2 hours of low and slow ribs cooking away while music plays in the background and just a day of the two of us together.

Friday, June 24, 2016

Rehab Drama

Rehab. Sherman was in fine form. He teased me all day and I gave it right back to him. At one point, the RN said, "Children, children!" to which I responded, "He started it!" We must have laughed from the time I hit the door until he finished up and left. Such a dear, sweet man.

Caveman and the other guy who has new lungs were both in class yesterday. Two problems. The other guy is such a jerk that Sherman had enough and talked to the rehab people about him. They are going to have a conversation with him to cool his jets a bit. He used to smoke and told us with pride that he smoked 22 joints a day. He only quit when they told him he couldn't get new lungs unless he gave up both the cigarettes and the dope. Have you ever met someone who smoked a lot of dope for years and years? Now you understand him. His brain is not firing on all cylinders. Caveman tried to make conversation with me, I responded minimally, and he drifted off. With my new workout routine, I never workout next to him anymore. Perfect. I think he has gotten the hint.

My saturation numbers were fantastic, the best they have been in a long time. Because I was feeling so good, I was able to push myself and felt like I got a really good workout.

Michael and I have been married so long that our life rhythms are identical. It happened again yesterday. On my way home over the pass from rehab, my phone rang. It was him. He was three cars behind me! What are the odds? It happens so often, unplanned, that we always just smile at each other and shake our heads. I tell him he can't get away with anything!! HA!

We have another performance with the Irish Fiddlers tonight after a very successful rehearsal yesterday. We will be back performing right near a major front entrance inside the organic market in town. People will walk in on this Friday evening from 5-7PM, tired from a long week, to be greeted with fantastic music and a simple wine tasting. What more does a person need? Their reaction at seeing the wine guy and hearing our music is visceral. Suddenly, they slow down, smile, take a breath and some even begin to dance. Children are the best. They fully dance and enjoy every moment!

Mom and I are together today. I need to buy some groceries but the big news is that Michael is going to haul out the BBQ this weekend and, for the first time, we are cooking ribs. The weather is going to be just gorgeous, tourists will be sitting on our highways while we enjoy our neighbors, gardens and BBQ. Doesn't get better than that!

Thursday, June 23, 2016

Winnie and Oliver

Oliver opened his wrapped birthday present of the boots and gasped! He quickly pulled on the cowboy socks then the boots. They fit! Perfectly! He was walking a big funny but we realized he was getting used to the feeling of boots. After a bit, he was running through my back yard playing hide and seek with us and he also played on slides and other equipment in the little neighborhood park. On the walk back to my house, he said to his mom, "We have to make sure to remember my shoes. I like my shoes but I like my boots better." So very cute.

Remember the name Winnie. She is only 9-years old but in a few years, I am certain she will be competing in the Olympics in gymnastics. After a couple years at a local gym, she has transferred to a better training program. When we think back to her as a baby and small child, she was always driven. She used to ask to go out to my cul-de-sac to run laps around the circle. She was four-years old. Laps. For an hour. She also is tiny in stature and smart. Did I mention she has already written several novels? When she first began at the gym, they could choose how high they wanted the balance beam. She always chose the highest level. Always. I hope I live long enough to see what she does with her life.

I sent a very late birthday present home for Winnie with Oliver and Natalie. Last evening, I received a text: Hi! This is Winnie. I just wanted to thank you SO much for the wonderful gifts you gave me. I love them!


Back to rehab class today!

Wednesday, June 22, 2016

Cowboy Getting Boots

Mary made it safely to her new home in Knoxville. It must have felt marvelous to sleep in her own bed in her own new home with her new roommate Debbie. Mother and daughter together at this time in both of their lives. Feels like I know this story! I am so grateful to be able to spend time with my mom and I am still learning life lessons from her.

Rehab class ran smoothly yesterday. My numbers were pretty good, I didn't feel like I was struggling for air, nothing hurt afterwards and I enjoyed so many conversations with different people. Love that. Such good, nice people who are also struggling down the same path of lung disease learning and laughing with each other. Sherman looked so good, enjoyed a perfect Father's Day dinner with his daughters and teased me all day. Perfect! I was able to pick up my mammogram reports to take up to the city for my medical files and met another woman in the process who I think could be a best friend. I love when two strangers make a human connection.

Back through the hospital with the report in hand, I was on my way to the car when I heard, "You're heading in the wrong direction." Caveman was back. I just waved and kept moving. Coming back through the door, I started talking with Sherman. As he strolled over to where we were sitting, dear Richard arrived! We had not seen him in months and were becoming worried. I had recommended mom's eye clinic at her university hospital as he was having problems with his eyes. Turned out he needed cataract surgery. Yesterday was his first day back to rehab, per approval of his surgeon. He thanked me for the recommendation and was so pleased with the results. He could see again! 20/20! While we were talking, the caveman was trying to break into the conversation but I kept the conversation going and he wandered off. I changed my routine so we were never side by side through the workout. Now, will he back away or become more aggressive? That is the question!

Today, my favorite six-year old is coming with Natalie for coffee this morning. Oliver will be surprised to fine a small single serving of a lava cake and his gift of cowboy boots waiting for him. I hope he likes them! We will probably take a walk to the park in our neighborhood, Natalie wants to tell me about her first hiring experience and I want to hear more about Ethan's new job. We may even have to go to lunch! While we are together, Winnie will be in her summer camp. I am sending a piece of lemon pie and her birthday presents home with Natalie.

A fun day ahead!

Tuesday, June 21, 2016

New Beginning

Today begins a new phase of Michael's mom's life. She begins her cross country flight to her new home in Knoxville, Tennessee with her youngest daughter. They are renting a home together at prices that don't exist in California anymore. Debbie's daughter and son are living just minutes away in their new house so Mary will be surrounded by loving, caring family. She is so excited to start this new stage of her life. It will be an improved quality of life for her and we are excited to watch her experiences from afar.

Mary's other daughter, Anna has been dealing with no air-condition in the desert east of LA. It was 109 degrees there yesterday. After they drop Mary off at the airport at 8AM, she and Doug are heading to a nice three day vacation at the ocean shore in Del Mar. Cooler. The air conditioning unit won't be fixed anytime soon as the needed part is coming from another state. Oh my.

But here on the coastside, the weather is gorgeous. Highs in the low 70s expected today. I am going to rehab class this morning. Thankfully, they keep the gym very cool for easier breathing and less sweating. This hot weather makes it more difficult to breath. Saturation numbers in rehab will be down. I haven't seen Sherman in two weeks, so I am looking forward to checking in with him.

I have been cooking great dinners with new recipes so I thought I would pass them along with other favorites from this week's lineup. Again, these are recipes for those of us on prednisone as we just can't process food correctly. Protein. Non-starchy vegetables. One pound of protein equals four servings. I stay to 1,200 calories to lose weight and 1,400 calories to maintain.

Tuscan Baked Eggs with Tomatoes, Red Onion, Garlic, Parmesan and Herbs - HERE
Breakfast Egg Bites -HERE

Pan-Seared and Roasted Mahi Mahi with Mediterranean Salsa and Feta -HERE
Italian Casserole - I used non or low fat sour cream and mayo - HERE
Shrimp Salad - I used 1-lb. of shrimp - HERE
Grilled Shrimp Skewers with Soy Sauce, Fresh Ginger and Toasted Sesame Seeds - HERE
Braised Balsamic Chicken - HERE
Grilled Cheeseburger Wraps - I use La Tortilla Low Carb tortillas as a wrap - HERE


Monday, June 20, 2016


For the first time years, we stayed home all day yesterday. The weather was just gorgeous, I made Michael a special Father's Day breakfast, we watched the SF Giants win their game, took a breath outside then watched our sweet Warriors come to the end of their season. It was a nice, simple day which also included a nap.

William phoned his dad after flying home from the tour later in the afternoon. It was a nice, long conversation. He and I also had a nice chat. One interesting thing he told us was that he was flying to New York to run the live sound for a large charity concert of a major singer for one of her crew's family is facing an expensive and difficult health issue. William is donating his time and expenses.

It is going to be hot all week. Welcome summer! Michael's sister is housing his mom before her flight to her new home in Knoxville on Tuesday but they are having a problem. She lives east of LA in the desert area, expecting the temperature to reach 110 degrees today and their air conditioner motor failed yesterday. Broke. Stopped. Not working. Mary is being sent to a neighbor's house this morning as those high temps could be dangerous for a person of her age. Hopefully, they can get someone out there to fix it but...I'm not holding my breath!

Mom and I are meeting the financial advisor to ask some final questions before she moves her investments to his company. Scary. I am leaving it to mom to make the final decision.

Sunday, June 19, 2016

Happy Father's Day

Happy Father's Day! I made a special breakfast this morning for my son's special father. William will phone his dad sometime today, that I am sure. They have an amazingly close relationship, which as the mom, I love to watch. They lean into each other when they are standing together. Their heads are always together while talking about something very important, indeed. The body language is so clear.

It is gorgeous is here today. The F1 race is on, the windows are opened and we will probably make our way into the world to search for a bit of lunch later today.

There will also be a nap, that is for sure. We didn't get home until 11:00 last night! Us! Unbelievable! The 21st birthday party for Ian was fantastic, I saw and chatted with so many people that I just didn't want to go home. The cold pasta salad was a huge hit and I gave out the recipe a few times.

I am dragging this morning!

There is nothing I HAVE to do today. It will be fun to see how the day unfolds.

Happy Father's Day!

Saturday, June 18, 2016

Life at a Full Run

Mom and I sat at a front window in Starbucks, talked and sipped hot drinks for almost two hours yesterday. Because I was meeting my friend Dolores for lunch and dessert, we were not going to be able to have lunch together or spend the entire day together so I arrive at her house very early! We had a very good chat before I had to leave.

A few minutes from mom's, I met Dolores for a Greek lunch followed by coffee and a piece of almond cake. May I state right now that I decided that had enough food for the day, ate no dinner but I did have a sugar-free popsicle later. There is nothing like getting caught up with a dear friend. Her life is so busy and I appreciate that she spends her precious time with me.

Michael and I arrived at home within minutes of each other, I finished putting together the shrimp pasta salad for tonight while he watched the early Giants ball game. We both were tired from being out with the Irish Fiddlers the night before and I noticed that he kept drifting off into nap-land. Guess we are getting old! Ron from next door dropped by for a bit, brought us some fresh lettuce from his garden and we talked about the new skinny Ron. He looked really good and within a week of his goal weight.

Today, it's into the gardens for me before a long, hot shower and Ian's 21st birthday party later this afternoon. Another busy day. Social day.

Dolores and I both agreed that it was shocking that it was already June, another Friday that came so quickly and that life was moving at a breakneck speed. When I think back to my grade school days and that it was only eight short years, but each year felt like it droned on forever. Endless days. The pace picked up in high school but it began to trot from that point on. We are in the running stage right now. Time is flying by so very quickly that I must remember to pause, consider, contemplate, settle my mind and be so very grateful for being alive.

Friday, June 17, 2016

Unusually Busy Thursday

During the worse times, I would drop by the church where Michael and I met playing music for a Mass, where we got married and where William went to Middle School. Lots of personal history there. Since I should not be around groups of people due to being immunosuppressed, we no longer go to Mass. I miss that quiet contemplative time. On my way to the rehab class yesterday, I dropped by the quiet, dark, empty church. It felt marvelous. I left feeling centered and stronger.

A month ago, I had spotted a possible new apartment complex for mom. An adult 55+ independent living environment. Having time yesterday, I spoke with the manager and took a tour. The hallways and lightening were grim and there was a feeling of not being run well. Not clean. The unit itself was very nice but smaller than what mom currently rents. It was not fantastic but definitely a backup if mom's place ever has a huge increase in rent - not rare for this area.

Driving back south to the hospital for rehab class, Sherman was not there! Oh No! But, I used the extra time to visit the mammogram and bone scan departments to get my medical records for the Lung Transplant Clinic. Super easy. I have to go back to get the mammograms when they are ready. Next time I have an appointment at my university hospital, I will bring them with me to be included in my medical files.

My numbers in rehab were really good. I had been struggling trying to hit a 91% saturation rate on the treadmill yet yesterday, it was an easy 94% on 2 liters of oxygen. The rest of the workout was just fine. After I got home, I had a couple of hours before we hauled the string bass into town for the stroll along Main Street. People would buy passports, go restaurant to restaurant for free appetizers and maybe have a cocktail along the way. My Irish Fiddlers were stationed outside a very hip restaurant, we had quite an audience and we all felt it went very well. Two and a half hours later, I was cold and ready to go home! We fell into bed and never moved all night.

Early this morning, I am seeing mom. She was at Home Depot and the bracelet holding her Mini Cooper keys slipped while she was loading plants into her trunk, She closed the trunk keys. She was treated so well by the Home Depot people, they let her use their phone, gave her a bottle of water and a chair to wait for Michael. She was thinking enough to phone him, having lunch just two lights away. He drove her home to get her extra keys, back to Home Depot and they found them in the trunk. I was in rehab the entire time!

Later this morning, I am leaving mom early! My friend Dolores and I are meeting for a good chat and goodies just on the other side of the pass. So looking forward to seeing her. What a nice Friday.

Thursday, June 16, 2016

Day Together

Back to rehab today! It will be great to see Sherman and get caught up on everything. I will still pull way back from caveman so it will be interesting to see his reaction. My focus is on the Irish Fiddlers performance outside in front of a restaurant in town from 6-8 tonight. The only problem is that we are expecting rain just about that time. Ironic! We will see if the performance actually happens or not.

Yesterday, gardening didn't happen but instead we showered and flew out the door. After sending the letter and packets to my attorney, we ran an errand over the pass for Jim, I spoke with someone I hadn't seen in years and Michael suggested we eat lunch at that restaurant right on the ocean in the town just north of us.

On the way there, I got a text from Jill (of Wayne, Jill, Ian and Evan) that they were throwing Ian a 21st birthday party early Saturday evening but not telling him people other than family are being invited. I decided to make a killer cold pasta salad, Jill wrote that it would be perfect so we had to swing by the other Safeway to buy everything. It takes three days to make. Today will be day one: cook a pound of vermicelli pasta and marinate in 1-1/2 cups of Robusto Italian Dressing overnight. Day two: add two pounds of bay shrimp, 1-1/2 cup of parsley, 1/2 cup of scallions, 10 ozs. sliced black olives, 2 cups mayonnaise, 10 hard-boiled eggs, salt. Day three: stir well and serve. Makes a ton. Recipe can be easily cut in half.

But, lunch. Shall we talk about lunch? We sat within feet of the ocean and watched the endless stream of whales swim by. Lots of spouting. Lots of breaching. We split the crab sandwich, which was divine. The owner came by for a chat and picked up the check! What a rare treat!

I prepped the house for the housekeepers today, made a breakfast casserole, sorted five months of paperwork and entered the important information in my book in preparation of next year's taxes. I felt a huge burden lifted from my shoulders as I had wanted to do that for the past few weeks but it just takes so much energy, focus and time that I didn't have. Done.

Wednesday, June 15, 2016

Lost and Found

It was another non-stop day yesterday. Mom and I met with her possible new financial advisor/CPA but only after we drove to the coast, did a quick run through Safeway and put the groceries away at home. We made it to the appointment in time but she discovered that her shiny black envelope with her current Morgan Stanley statement that she was bringing to the appointment was GONE! It had been on the floor of the passenger seat of her car, which I was driving.


We got through the appointment, contacted Ron next door to have him check my driveway and NOPE. Nothing. We drove to Safeway and I asked the office if someone had turned it in. NOPE. The woman asked me to leave my name and number incase it surfaced.

We were driving to mom's to see if it fell out while she was getting into the car when my cell phone rang. Some kind person turned it in at Safeway! She was so relieved. Apparently, she kicked it out as she got out of the car. But, we were over the pass so we continued onto Nordstrom for lunch before playing the card game Shanghai after lunch. I won for the first time in a while!

On my way home, I picked up her envelope at Safeway and thanked everyone within hearing distance. Later, the rehearsal for Thursday's performance of my Irish Fiddlers went really well. I fell into bed at 8:30PM and snored until 6AM! I finally feel rested.

Today? Michael and I are together all day. I am going to make copies and get the documents into the mail to my attorney first thing this morning before doing some gardening. Rain is due tomorrow! Good news! I also am making a casserole for my breakfasts, getting the house ready for the housekeepers tomorrow and will try to sort and organize all my paperwork since April. A big stack. I also have a feeling we will be going to lunch together. A treat.

Tuesday, June 14, 2016

On the Road

Mom and I drove 107 miles together yesterday. She had an absolute ball as we careened through a ton of different neighborhoods in the city. She loves old Victorian houses and was able to see hundreds of them, each so different from the next.

After I phoned my new friend at the Medical Records office deep in the city, she told me I could drive up to pick up the documents I needed for my attorney. Since I was at mom's, I told her I would be hauling her with me. Mentioning her age, I told her she will be shocked when she saw her in person.

It took an hour to make our way through the city even though there was very little traffic. With schools out for the summer, everyone seemed to be on vacation. Marvelous. When we met my new friend, she laughed and said, "You're right!" She couldn't believe mom was going to be 88-years old in August! I was able to get the paperwork then we walked down the hallway to the radiology medical files to request some CT scans. Thought it would be helpful for the attorney to have my first CT Scan from December 2004 and the latest one taken May 2016 for comparison. It was so simple and free! A lovely woman copied them both onto a CD with the proper labels and handed it to us within minutes.

We hopped into the car, waiting for us at the valet station, and headed to Palo Alto to get mom's forgotten makeup purse. She left it there last Friday. From there, we drove back to her area and had lunch at Mimi's and used a coupon. I made a Trader Joe's run after lunch.

Mom kept saying, "What a fun day!" She is in the city so rarely and to be deep into the neighborhoods with all the old homes was such a treat.

Today, I need to leave early to drive mom back to our little town to meet with our tax accountant's boss. He reviewed mom's investments and has a report and suggestions for her. We are going to Nordstrom for lunch afterwards. But first, I am going to the butcher. A big driving day again today!

Monday, June 13, 2016

Pedal to the Metal

Well, the goal was the gardens yesterday but I never got there. I just was not feeling well. After watching the F1 race from Canada and Michael running over the pass on an errand, I fell asleep on the couch. Maybe it was the final antibiotic that I took in the morning or maybe I was just recovering and needed additional sleep. Within minutes of waking up, he arrived home and said, "Let's go to lunch!" And we did.

The pots were watered, we ran a car to a mechanic friend a mile away and the alarm company phoned. The police were on their way. NO! I knew Michael probably hadn't closed the side garage door tightly enough and the wind blew it opened. I drove quickly home, called off the police and found the door opened. Everything was fine, heart beating faster, but fine.

I had ordered my medical files for the project with the attorney. When I phoned on Friday to see how it was going, I realized that it was going to cost a fortune at $.25 per page for twelve years of records. I have not slept well all weekend! This morning, I am phoning the woman who is working on it, will ask to change the request to just the first two years and whatever she already has completed. If she needs the request for a change, I will haul mom with me to the city first thing this morning and get it taken care of.

Mom left her makeup pouch in the booth at PF Chang's last Friday so we need to drive to Palo Alto to pick it up. Maybe lots of driving today. Hopefully, not.

Sunday, June 12, 2016

Saying Goodbye to the Library

Our little town is building a new library and yesterday was the final weekend before it is being torn down and the building will begin. There was a goodbye party yesterday and the Irish Fiddling group was the entertainment. Background music for two hours. I was rather surprised to see all the people on computers, kids doing craft projects and a table laden with lemonade, cupcakes and berries. The place was packed, as usual for a Saturday. We have a very active library.

What I loved were the little kids who watched us, danced to our jigs, made us smile and stayed the entire two hours. Wow. Natalie, Ethan, Winnie and Oliver came for an hour before heading off to a birthday party. It was so good to see them in person! We planned to get together next week. Lots to talk about. Natalie told me she had her first hiring experience and wants to tell me all about it. Oh boy! She was my best hire but I did have one horrible hire, which taught me so much more. Can't wait to spend some time with all of them!

We Irish Fiddlers (me on string bass) sounded good in the space. The quieter guitarist actually was a better fit as the music was softer. We did not overwhelm anyone. No one had their fingers in their ears. We ran through our two sets, which was really a good rehearsal for our formal gig on Thursday night. Our little town has a locals night out, passports are purchased which brings free appetizers to the table as people hop from restaurant to restaurant. We are playing on the porch of one restaurant in an old converted house right on Main Street. Outside. At night. I will need several layers of clothing!

Saturday, June 11, 2016

Medical Records

The new antibiotic must be working as I am feeling so much better. Not 100% yet but better. I'll take it!

When I got to mom's yesterday, she was so upset. Her disability placard had disappeared while she had the doors opened cleaning her car. "Someone one must have seen it and taken it while I was cleaning!" She searched and searched. She called DMV to report it missing only to find there was a 90-minute wait to speak to someone, left her phone number but never heard from them. "What am I going to do?" I offered to search the car even though she kept saying it was not there!

Under a minute, I spotted that it had fallen between the far back side of driver's seat and the space between the front seats. She grabbed me and hugged me. Twice! She was so very happy! Then she said, "I'm buying lunch!" Off we went to the eye doctor then PF Chang's for lunch. We even got a full round of the card game Shanghai in before I headed for home. She soundly beat me. We laughed and talked all day. A good day.

I had ordered my medical records for the lawyer and had not heard anything from them. I phone after I got home, spoke with the woman who is doing the copying then began to panic after we hung up. I thought a medical transcriber would write up my history but no, copies of everything. LOTS OF COPIES at $.25 each. From 2004 to the present that could cost thousands of dollars.

At 1:30AM, I woke up in full panic mode. What is it going to cost and how will my expensive lawyer read through it all? Thousands and thousands of dollars. I realized that I had kept a diary on a WORD doc from 2004 until 2009 with dates and any medical contacts. I think that is all my lawyer will need and we can send the full medical files to the Trust attorneys. I am going to phone the woman back first thing Monday morning to ask how many years she has already completed but she had mentioned that she did not have the medical files from the early days yet as they were not on computer. I want to ask her to change the request to just 2004 and 2005. That alone should save me over $1,000. It was only after I thought of that at 4AM that I was able to fall back to sleep.

I am going to need lots of coffee to keep me focused and awake to perform this morning with the Irish Fiddling group. Wish me luck! NO! Break a leg!

Friday, June 10, 2016

Another Antibiotic

I dozed off for a bit yesterday afternoon after I finished my list of things to do. The antibiotic caused sleeplessness and I was tired and not feeling great. Yesterday was my last day to take the Cipro and I was hoping I would feel better this morning.

The phone rang around 5PM, it was the doctor's office to inform me that the culture of my UTI came back with a bacteria which is resistant to Cipro. A new antibiotic was ordered. A minute later, the phone rang and it was the drug store reporting that my prescription was ready for pickup. Off we went into the rush hour traffic. What we didn't know was that it was high school graduation and everyone was at the high school. No traffic!

I began a three-day run of nitrofurantoin last evening before going to bed. I was so tired from being unable to sleep that I slept eight hours before drifting off for another two hours. I feel so much better this morning! Finally!

Mom has an appointment to have a shot in her eye for macular degeneration this morning. We will fit lunch in there afterward and probably talk non-stop.

Our friends Jill and Wayne were at the graduation ceremony last night for their younger son, Evan. He is one smart cookie and is off to college in the Fall. What a milestone!

Thursday, June 9, 2016

A Perfect Day

I am so grateful that after 42-years of marriage, a most perfect day for me would be spending it with Michael. It was yesterday. We did very little but were just together. Life slowed down and it will continue at that pace again today. I need to take it easy for one more day then I can return to my life tomorrow. I am feeling so much better. No pain. Thankfully.

Later this morning, I will head out to do a bit of grocery shopping in town, balance the checkbook, finished a book, wrap the birthday presents, pickup the house, do a bit of my laundry and probably iron everything. No heavy exercise. No rehab.

I forgot that some antibiotics cause sleeplessness and I have had problems with this in the past. When  I was in the hospital with pneumonia and receiving IVs of antibiotics, I never slept. They were worried. Last night, I struggled to sleep. Boom! Wide awake. I remember looking at the clock at 4AM, drifting off to sleep then waking up feeling like I had slept for hours. It was 4:10AM. Ten minutes. I am looking forward to the end of the Cipro and the hope of some sleep soon!

Wednesday, June 8, 2016

From the Couch to the Garden in 24 Hours

WARNING: This blog may contain too much information about UTIs for some people. Yesterday morning, I felt an UTI coming on but it didn't feel like the usual symptoms. Yes, I was up three times in the night, highly unusual for me, but I had no burning and no pain. There was a feeling of "thick urine." My plan was to phone the local doctor for an appointment yesterday or even today. No problem.

Suddenly, everything changed. After I had been up for a bit, I felt I really needed to use the bathroom once again. It came with knee-buckling intense pain but no usual burning pain. It was awful.

The doctor's office wasn't opened yet so I slowing put on makeup, fixed my hair and got dressed. It was time. I phoned. If they could not fit me in, I was going over the pass to immediate care. It was that bad.

"Can you come at 9:30?" YES!!!! Thank you. But, NASA, we had a problem. There was a huge accident on the pass, a pole with live wires were down waiting for PG&E and traffic was stopped all the way up the coast. Could I make it into town on time?

I made it. Turned out that it was not a usual UTI. The doctor suspected that I actually had a bout of interstitial cystitis. There was a lot of blood in the sample but she is sending it out to be tested for bacteria. Three day of Cipro.

My Irish fiddling group is playing at the local library this Saturday and for an event in town next Thursday night so I didn't want to miss the rehearsal last night. Michael was not happy. He worries about me. I spent the rest of the day on the couch in the living room, took a two-hour nap and promised him I would not stay at the rehearsal for more that an hour. Well, I did go over the hour but not by much.

I am feeling much better this morning and I have no more pain. The bad news is that the bladder is one of the organs tested for approval prior to lung transplants. This may be a problem that needs to be resolved. Another hoop to jump through.

Today, Michael is home with me all day, I have a dentist appointment then we are going to lunch. A couple of things in the garden need to be trimmed and a couple of things need to be taken out. I think my job today will be to hold the ladder and point. He will do the rest.

Tuesday, June 7, 2016


My favorite six-year old is going to love his new boots! I found them at the local Feed and Fuel, a real working store where one can also buy chicks and rabbits and saddles and feed for a variety of animals. Oliver is going to go crazy! And, we found the best binoculars for Winnie - small but powerful - at Big 5 Sporting Goods. We then found some field guides to the local birds and a pack of 100 cards with cool photos and information from the National History Museum at Barnes & Noble. Perfect for my favorite 9-year old who is into nature. Mom and I had a ball finding everything. 
I think I am at the early stages of a UTI, so I will swing by the local doctor this morning to see if I can get in to see her today or tomorrow. If today, I won't go to rehab. Tonight is an Irish Fiddle rehearsal in preparation for next week's performance in town. 

Monday, June 6, 2016

A Bit of Shopping

It was a fun day. We tried to drive down the coast but we forgot that the AID/HIV fundraising Bike Ride to LA was happening and there were a ton of bikes heading down the coast. They caused the cars to slow down so traffic was at a crawl. We decided to stay in town!

We stopped by a friend's house south of town, chatted a bit and toured his new home with gorgeous views. He lost his wife from cancer just about a year ago and recently discovered he has lung cancer. His first dosage of chemo helped to stem the flow of fluid into his lungs, which had been at a rate of 1.5 liters a week. That's a lot of fluid. He looked good.

He lived near the fancy Ritz so we walked down to the Pro Shop to a great little hidden gem. I had the blackened salmon sandwich - minus the bread - and Michael had steak and eggs. It was cool but the sun was finally beginning to break through the fog.

We spent some time on the back patio in the afternoon just enjoying the time together. The Warriors and Giants were playing at the same time so we kept going back and forth between the games. A big win for the Warriors and a sad loss for the Giants.

Mom and I are going to shop for 6-year old Oliver's cowboy boots for his birthday. There is a Western Shop near mom's house then we will run to Big 5 to check out smaller adult binoculars for his older sister Winnie. I missed her birthday in December! She is totally into nature and thought she would like good binoculars to watch birds and whales and anything else. A fun day ahead! It is sunny but perfect weather today. Not too hot!

Sunday, June 5, 2016

A Little Oxygen, Please

The sun never came out yesterday. Zero. AND it is still foggy this morning. It was marvelous to work for three hours in the garden without the hot sun beating down on me! I got a lot done, trimmed, planted and cleaned up but still need Michel's help today. There are a few things that need to be trimmed and a few things removed.

We have no other plans for the day except for the Warriors and Giants games and an email to the attorney. I love these days. It is always fun to watch how they unfold.

Jim phoned Michael to swing by the yard to pick up some fresh petrale sole that was caught yesterday. I cooked it up in a pan for a quick absolutely delicious dinner last night. What a treat!

I have noticed that my breathing is going downhill. There was a lot of coughing yesterday and even on 4 liters of oxygen, I was still needing to take breaks while working in the garden. I must remember that the downhill I am feeling is the new normal. And adjustment is needed. I need to be more mindful of my breathing. I need to remember to bring oxygen with me when I go over the pass to be with mom for the day. At the end of the day, I am exhausted and I think it is because of not having enough oxygen during the day. I don't want a stroke or heart attack so I really need to listen to my instincts. Time to bring on the oxygen.

Saturday, June 4, 2016

Into the Garden

It was hot and I forgot to bring my oxygen with me yesterday. Not too smart! We made mom's pacemaker device checkup with lots of time to spare, had lunch and did a lot of walking in the hospital. The good news is that she is doing extremely well as the device is working properly. "See you in a year," said one of our favorite doctors.

But, traffic trying to get back to mom's took almost an hour. Our usual way home was block for some reason, it took is a lot longer to get to the appointment, so we made sure not to go that way afterward. We followed El Camino Real, which is a historic road from Southern California through Northern California. It is spotted with Missions built by the Franciscans a day's journey apart. Yesterday, it had packed with traffic and it took about double the time to get to mom's. It was 94 degrees. We were tired. It was rough.

Then, I had to drive to the coast. It also took an additional twenty-minutes to get home. I was done. Michael was on the phone with William so the bonus was that I had a nice chat with our son. He leaves this morning for a two week tour of the East coast. We watched the Giants game and I fell into bed.

Today, I have the data ready for the lawyer but I need to compose an email, which will take some time. Then, I am heading into the garden for the rest of the day. The feeling of exhaustion,  contentment and a need for a shower is my goal for late this afternoon. The fog is in right now but I expect it will break up soon. I am expecting thousands to join us here on the cooler coastside today.

Friday, June 3, 2016

Wearing My Oxygen

Golden State Warriors won. I was so tired, I feel asleep during the last five minutes! Now, that is tired! Giants also won their game yesterday.

It was hot over the hill and I was very grateful that I had my oxygen with me. I was hauling groceries and plants. When it was on, I sort of forgot and was rather surprised when I noticed people looking at me. Some people hate the stares but I look at those stares as an opportunity to educate, if someone comments. At the casino on Wednesday, I became amused when I noticed that when I paused at a slot machine near someone smoking, they quickly moved. I guess they didn't want a visual reminder of their future, if they continued smoking.

I find that most people are kind, smile at me in an encouraging manner and move on. I have had very negative comments thrown at me in the past. One was in the elevator coming from the old gym at the other rehab when a woman saw my oxygen and said, "You shouldn't have smoked!" Imagine saying that to someone! I smiled and replied as I left the elevator, "Funny, I have never smoked." So arrogant!

The fog is lifting right now, it is expected to be 65 degrees here today but everywhere else in the Bay Area, it is going to be HOT! Mom has an appointment with her pacemaker doctor at noon at her university medical center. We love her doctor, who is also a pianist. She feels well so I expect they won't find any problems. Because of the hot weather and we have to walk a bit, I am going to bring my oxygen with me again today.

Thursday, June 2, 2016

Appreciating the Fog Even More!

Oh, it was hot yesterday! The peak was 101 degrees in Stockton but it averaged around 100 degrees all day. At the same time, it was 64 degrees on the coastiside! I am so spoiled!

We were on the road on time, had an easy drive because of reverse commute and made our first stop to visit dad. Michael had not been there in a few years and was stunned at how well the entire cemetery had matured. Truly beautiful! After changing his flowers then cleaning mom's brother's plaque, we headed east towards the foothills.

It was so California. The hills were golden with just the perfectly placed trees dotting the hills. We drove through tiny towns including Sutter's Mill, the first place gold was found sparking the 1949 gold rush. The casino was excellent, empty and we all agreed that it was the best ever. I came home a bit ahead, Michael made money but put it all back in and mom left about two hundred dollars there. She still had a great time.

I so appreciated having Michael with us as I was exhausted. It was a long day after a long week and the traffic was difficult at times but he handled it beautifully. We both slept like babies last night.

Today, the housekeepers are due so I am off to buy a plant for the front garden and groceries. This afternoon, the focus will be to finish the financials and paperwork to send to the lawyer.

Wednesday, June 1, 2016

Off to the Hot Valley

The alarm went off at 5AM and we are out of here by 6:30AM. Mom is waiting to begin today's adventure! We are going to visit my dad's crypt, change the silk flowers and clean her brother's plaque. It is about a two-hour drive to the cemetery and it is going to be HOT out in the central valley today.

There is an Indian casino about 40-minutes to the east, through the Sierra Foothills. I am bringing my oxygen with me as well as a mask! My mom is going to be in heaven. That woman loves casinos and has not been in one for a year. I'll bet she didn't sleep well last night. Too excited.

Well, the caveman didn't show up at the rehab class yesterday. I was rather relived. The workout was great but I had to kick up the oxygen to 3 liters. Not a good sign. We will see how I do today. At the Irish fiddling rehearsal last evening, we are preparing for a performance in two weeks. The strong guitarist will not be there - vacation - so a new member has to take his spot. He is not a strong musician so we are just trying to have him feel comfortable with the music. Should be interesting.

Here we go! Maybe my lucky husband will win a jackpot! Wouldn't that be fun?