Living Well with a Bad Diagnosis - Lung Disease

Sunday, May 31, 2015

ER Visit

Hello! I am home! We really had an adventure yesterday. We were in the ER of my university hospital in the city by 9AM. We were the only ones in the waiting room so there was not much of a wait! After having my vitals checked, we met our adorable nurse who put in a line to draw blood. Lots of blood. After a great interview by the fellow, I had an xray taken then we waited for all the results.

The major issue was the constant cough. Was this pneumonia? Was this an exacerbation of my lung disease? Was I going downhill into lung transplant?

The minor issue was my poor ear. The pus was gone but it was still pretty filled with a lot of fluid.

We waited to hear the results of all the test. My phone dinged. It turns out that the email system at the hospital gives the results of any test to the patient at the same moment it gives it to the doctor. I read the results of the blood tests before the doctor came in to talk about the results of the blood tests. What was great is that he didn't have to go through all of them as I had already spotted the problem. My while blood cell number was huge. NASA, we have a big infection.

The results of the xray showed no pneumonia and really no change to my lung disease. As my xray was rather ugly and disease ridden, there was a thought that there might be some hidden pneumonia. Maybe. Thus the cough.

They wanted some advice so they phoned the doctor on call in the pulmonary department for a chat. They all decided to give me a five day run of a MAJOR antibiotic, which they told me should take care of both the cough and the fluid in the ear. They also wanted me to check in with Dr. K.

It was noon.

They set us free. On the way out the door, we ran into the ER nurse we met when I had pneumonia almost three years ago. He remembered us. I had thought of him often and wanted to thank him. He had such fun with us that he score a private room for me. It made for a much easier three-day stay in the hospital. I was finally able to say thank you.

After we got settled at home, I sent an email to Dr. K. so she would see it Monday morning. I told her about everything leading up to the ER visit and where we current stood. I was with utter shock when I got a notice on my email that there was a message for me on the hospital email system from Dr. K. not two hours later. That woman is amazing. She wants me to send an update via email on Monday then we will decide if I need to see her DURING HER LUNCH TIME on Friday. I am so totally blessed to have this woman as my doctor.

Last night? Coughed a bit early on but suddenly it was 6AM and I had not coughed for six hours. A major improvement. The ear? Still closed.

The goal for today is to do a few cleaning chores and ironing in anticipation of Anna and Doug's visit this Friday. And a nap!

Saturday, May 30, 2015

On Our Way to the ER

I am gathering my things with the assumption that they are going to keep me a few day. Michael and I are going to my university hospital's ER this morning. It was a rough night. It was so reminiscent of over two years ago when I had pneumonia. There was very little sleep last night and just a constant, hard cough that make me shake. I am exhausted.

The hope is that they give me some bigger, better, stronger drugs and send me on my way. The reality is that they are probably going to put me on a broad spectrum of IV antibiotics for three days. I know the drill. Hopefully, I can have a private room!

Before we go, I have to map where mom needs to be for her driver's licence renewal test on Monday for Michael, pack my makeup and robe, fill the pill container for Michael's pills, print the latest list of medications, write the checks for the mortgage and other bills, make a bank deposit and take a good shower.

If you don't hear from me for a few days, know that I am in the hospital trying to stop the pneumonia in its tracks.

Wish me luck!

Friday, May 29, 2015


I must say, we clean up pretty good. Showered, shaved and in nice clothing we made our way into the city a bit early. No traffic. Found easy parking. We went to hospital cafeteria so Michael could have some protein and we sat and chatted. We also looked at our notes for the speeches and tried to relax. Then, I spotted a person from the pulmonary function lab, we had a great chat and that really calmed us down.

There was one bit problem: I felt horrible. I felt worse than Wednesday. My left ear was totally plugged all day long. Michael asked if we should cancel. NO! I will be carried onto the stage instead of canceling!

But, I felt pretty terrible all day. Nose running, coughing, exhausted.

We made our way to the auditorium. We were very early but it gave us time to feel the room. Michael was thrilled that it was smaller than a church. He gathered his confidence. Finally, the players arrive. The coordinator, three doctors and two other speakers gathered on stage, reviewed the program order, took our seats and suddenly, we began.

The head of internal medicine introduced one of the doctor's who introduced our Patient Advisory Board to the crowd and talked about what we actually have accomplished in a very short period of time. From there, we began.

The first patient spoke so beautifully, had little cards she read from, thanked everyone for attending, and had amazing remarks. Excellent! The second patient then spoke with both of his "hats" on as he is a patient as well as a retired physician. He spoke in their language. Then, my turn. I put my notes aside and just spoke. My brain was not 100% and I wish I had mentioned a few other things but I was mostly satisfied with my performance. Michael told me later that when I handed the microphone over to him, he thought, "How can I follow the other three speeches?" He spoke from his heart. He spoke about how if felt to have our lives suddenly change. The grief of not having the life you had planned. The fear of losing a spouse. It was very touching.

We then had a round table discussion about the technology issues. Do we like computer system? That sort of thing. This was followed by a quick question and answer session. I LOVED that. Then, it was done. Over. Finished.

But, sitting right in front of us was a doctor whom I have admired from afar for years. He is HIGHLY respected pulmonologist, is on the board of a pulmonary organization I support, he is on the board of a clinic in Italy and supports the doctor there who was behind one of the new anti-fibrotic drugs, I had seen him give a lecture about Hypersensitivity Pneumonitis in the same room we were in yesterday and saw for my own eyes why he is so loved. He is a hoot. I had never approached him. After the program, he came to introduce himself, I told him that I was thrilled to finally to meet him as I have been following him for years. We talked. He invited us to visit his parents in rural Georgia the next time we were in the area south of Savannah. They would take us out into the deep country for shrimp. The best shrimp ever. We also learned that he was just named the new Dean of the Medical School.

From the auditorium, we made our way to the Chancellor's meeting room where they had a light lunch and snacks waiting for us. This amazing doctor joined us and we all enjoyed a fun and rather deep conversation for the next 45-minutes.

Michael gave me the sign. It was 2:00 and we had not eaten as he had whispered into my good ear that we were going out. We all left together, made our way to the car and drove to British Don's across town. We had not seen him since he returned from two weeks in Hawaii. Life is tough!! He hopped into the car and we had a great, late lunch/dinner at our favorite restaurant owned by the Frenchmen. They were there, lots of kisses on both cheeks and we settled in for over two hours. It felt great to debrief about the speeches as well as hear about Don's vacation and the up coming wedding plans for his daughter in Nashville.

We headed out of the city by 4:30 and were just minutes ahead of the horrible rush hour traffic. We made it home in record time, Michael had a shot of bourbon over the rocks, even though it was not a Friday, and we watched the Giant's game. Life returned to normal.

I slept on the couch as I didn't want to keep him awake with my coughing. I actually slept well, only coughed around 2AM, fell back asleep and feel a bit better this morning. My ear? Still blocked. I am going to spend some time with mom today. She had her volunteer appreciation luncheon on Wednesday and had been so excited about going with a friend she had made while working at the main branch of the library. I also want to see how she is doing. We'll have a bit of lunch then I have a nice afternoon nap.

Thursday, May 28, 2015

Just Plain Miserable

It's been a rough night. I slept upright in my chair until around midnight when I eased it back for comfort. The coughing began. The coughing like pneumonia. Worrisome. This morning, my ear is closed again and I can't hear a thing.

I'm a mess.

Great. Just in time to give our big presentation today at my university's Grand Rounds. We will be two of the four featured speakers in a huge auditorium filled with doctors. After a hot shower, we are leaving around 9, meeting the rest of the group at 11 then the hour-long presentation begins at noon.

There is a VERY famous pulmonologist at my hospital who is a hoot. I saw him give a lecture about my disease in the same auditorium we will be in today. Apparently, he will be joining us for lunch after our presentation. I am thrilled and so hope I will be able to hear him!!!

The good news is that I have lost my appetite and I cannot taste a thing. This is not a fun way to lose a couple of pounds! Michael just made some hot compresses to reduce the swelling of my face and maybe open up my ear.

Here we go. Wish us luck.

Wednesday, May 27, 2015


So the doctor looked into my ear yesterday and pulled back in horror. Pus. Lots and lots of pus behind the ear drum. "It may rupture," he said. That explains half of my face being swollen. My teeth hurt on that side. But, I don't have any wrinkles!

I ended up going to an immediate care place on the other side of the pass. He gave me a gel for my eyes - also full of pus - and some major antibiotics. Cephalrxin. 500 mgs four times a day.

It was a bad night. I coughed constantly and am worried about the MRI today. Can I lay still for an hour? No sneezing. No coughing. This may not work. Afterwards, I am coming home and sleeping.

Our big speech is tomorrow. I am hoping that the antibiotics kick in and that I feel better.

Tuesday, May 26, 2015

Really, Really Sick

I give up. I am really sick. Both eyes were crusted over this morning, pressure is in my lower sinuses, green stuff came out my nose, my ear is dull and ringing, the cough is nasty and I feel awful. How is that for whining?

At 9AM, I am going into town to do the banking then to the doctor to see if she can see me sometime today. If not, I am going grocery shopping before going over the pass to an Immediate Care place for eye drops and antibiotics. I hope. If they won't give me antibiotics, I will have to contact Dr. K.

Sometime and somehow today I will begin antibiotics.

I phoned mom yesterday and she feels so much better after starting on antibiotics last Friday. We have no groceries in the house so if I have to go over the pass, I will hit the butcher and Trader Joe's while there. This afternoon, I need to cook breakfasts for Michael, my lunches and our dinner for tonight.

No rest for the wicked!

Monday, May 25, 2015


It was a very quiet day yesterday. I have a feeling today will be the same. A nice respite as the craziness is returning as I prepare for our guests. Also, I need to prepare my speech for Thursdays Grand Rounds. A speech about my story in five minutes. A challenge.

I feel like I have full blown cold symptoms. The nose: it never stops running. My ears: one keeps closing and I feel like I am talking in a tunnel. Energy: none until I get up and move then I feel better. Cough: dry, hacking one on occasion and lessens throughout the day. I still have my voice, which is good because of the speech on Thursday. Wish I felt better. If I notice green stuff from my nose, I will write Dr. K. to get approval to take some antibiotics that I have here at the house.

We have been in a serious drought situation but these past five days, it has been wet and drizzling. Probably sounds like a horrible way to spend a three-day holiday weekend but all of us are rejoicing. The garden is actually wet! There is snow in the mountains in May! All good news as the low seems to be hanging just right for even more of this weather. We will take all we can get!

Enjoy your day with your family then back to life tomorrow.

Sunday, May 24, 2015

A Perfect Morning Surprise

Let me set the scene. Yesterday, we worked for several hours together doing major trimming in the front yard after I cut the backyard. It was a chore that I cannot do alone. The challenging neighbors next door are gone for the weekend so we took the opportunity to trim back our bushes so they wouldn't hang over into their "space." She tends to poison any plants that grow into their space. Challenging. (Did I mention that there are severe alcohol issues with both of them?)

So, after working and cutting all the large branches into small twigs to fit into the garden recycling container, we were pooped. I was feeling so much better after taking Coldcalm. After a simple fish dinner, I was in bed and asleep by 8:00.

Waking at 6:00 this morning, Michael was already up. Stumbling down the hallway towards the smell of fresh coffee, I was dumbstruck. He not only had made the coffee and set up the living room table for breakfast but he had started a fire in the fireplace. A real fire. Such a surprise. So very sweet.

While I am typing, he is now on the phone with his mom, he has eaten breakfast and soon we will be watching the Formula 1 race from Monaco. A perfect morning.

Our focus today is to practice our speeches for Thursday's Grand Rounds at my university hospital. Maybe we will fight traffic and make it into town for lunch. Or not!

Saturday, May 23, 2015

Hello Virus!

Memorial Day weekend. A time to pause and to thank those who gave their lives for our freedoms. A time to thank those who fought in wars. I have told the story already about my mom's brother being shot down over German and his body was never recovered. It destroyed her mother. My mom was just a pre-teen and her life changed forever. Just one family's story. Sadly, many live with the death of a loved one in their immediate family. Today is the day to remember them.

This weekend, Michael is not leaving my side. A special weekend! We are working in the gardens today, I am making a special lunch and we will both probably take a nap this afternoon. A slower pace. The weather here is cold and foggy and a bit wet. Good working weather. That is the plan but, knowing him, we will go somewhere for something tomorrow. He gets itchy.

I am really heading downhill. The virus has landed. I began my Coldcalm routine late yesterday and took an Aprodine last night so maybe I can stall or stop this from going into my lungs. Or not.

Anna is going to phone this weekend to discuss their upcoming visit in two weeks. What to do? What to say? I want to go forward with their visit. We have had to cancel it two times and I just want to do it. Michael has already arranged to take two weeks off from work so he can help me and be with them the entire visit. We'll see what unfolds.

Friday, May 22, 2015


At the eye doctor's yesterday, she told my mom that her eye infection and hoarse throat were probably a virus that is going around. She was concerned because she has seen patents also develop walking pneumonia with this virus. Thankfully, we are going to mom's primary this afternoon so we will make sure to have her lungs checked.

I woke up this morning with a sore throat. The big speech is next Thursday. I hope I still have a voice.

Anna tried to contact me yesterday to discuss their arrival next Friday. Maybe their third attempt of a visit may have to be cancelled again due to this virus. Nuts!

British Don has been in Hawaii for a week and has another week of sunshine and sunsets. We miss hanging out with him!

I plan to leave the house early this morning, workout at the other rehab, meet mom for a Target run then  nab a bit of lunch before her doctor's appointment this afternoon. A big, full day.

Thursday, May 21, 2015

Two out of Three

One done and two to go this week. Mom's doctor appointments. The heart doc was happy to see her yesterday and sent her off for another year. Today is the eye doctor to check her pressures after the surgery. I hope to make it to the rehab class afterwards but I have a problem. No sleep. Last night, it was muggy and warm and I was suddenly wide awake from midnight to four. The alarm went off at 5:30. It is going to be a long day and I will need a nap.

I made the lists for Anna and Doug's visit in two weeks. Menus, shopping lists and schedule for everyday leading up to their visit are now ready. The goal, per their request, is to have a nice lunch out everyday then just a couple of light appetizers for dinner each night.

This holiday weekend, Michael and I will be working on our presentations for the Grand Rounds next Thursday. I am so not nervous at the majority of the hour presentation will feature four of us in a round table discussion of different topics then a question and answer session with the audience.

But, I just need to get through today with the help of coffee. I'm dragging already!

Wednesday, May 20, 2015

Thoughts About Weight Loss

As I was thinking more and more about my dramatic weight loss five years ago, I remembered I noticed how people treated me so differently than when I was seventy pounds heavier, though I felt the same. My focus, at the time, was totally on the numbers on the scale to hit that 30 BMI maximum for lung transplants. I didn't shop for clothing until the end when I really didn't have anything to wear. At that time, I bought a pair of black pants and a pair of jeans. That was it. My workout clothing was loose but doable.

It wasn't until I began to wear my new pants, even with larger jackets or tops, that people began to realize that I had lost a lot of weight. I started to buy a few other items once I hit my goal. Then, the attention really began.

People who had rather dismissed me began to ask about my weight loss. Sales people in department stores clamored to help me find the perfect clothing in the right size. (Formerly, I would be told that if I needed help, let them know.) Women began to opening up to me about their weight issues. Every single person told me they wanted to lose 10 pounds or more.

And I had thought everyone was happy with their weight because they were so thin in my eyes. Thin = happy.

I began to so regretted not taking the drastic steps to lose the weight years earlier. But, maybe I wasn't ready to face it and it took a major life-ending disease to get my attention. Now the real work is to keep the weight off. It is the focus of everyday.

Tuesday, May 19, 2015

Secrets of Keeping Weight Off

Sometimes I pass a window or mirror and I am still so surprised how much weight I have lost and have kept off. It is nothing short of a miracle. Meeting with the nutritionist and weight management doctor on a consistent basis has really helped. But, the major change in my life that has contributed to the pounds not coming back is this: the proper food is in the house. It is how I prepare the menu for the week and have everything ready to go. I don't have to think about what I want for breakfast or lunch. It is there. Ready.

And that's the other major contributor: the moment I arrive home with the week's groceries, I cook. I make Michael's breakfasts, my breakfasts and lunches, and dinner for that evening. The thought of going out to lunch doesn't even cross my mind as I have something delicious waiting for me. I am looking forward to it.

Yesterday, I made it to the butcher's and Trader Joe's but not Safeway. So, the first thing this morning, I am going to finish my week's shopping then after my rehab class, I will be cooking our breakfasts of Boursin Deviled Eggs and the Cauliflower Casserole for my lunches. Dinner tonight? I think the Grilled Ginger-Sesame Chicken Salad.

I had one of those nights where I went to bed and did not move for almost nine hours. Never woke up. Never felt Michael's coming to bed. Never felt Michael getting up this morning. I peered over to his side of the bed and giggled that the only proof of him having been there was the wrinkled sheets. Then the dear man had the best coffee ready for me. What a guy.

Onto Tuesday!

Monday, May 18, 2015

Recipes for the Week

It was a very quiet Sunday, we shared a lunch and I slept over an hour in the afternoon before watering the garden. Then, we moved to the big TV to watch the final episode of Mad Men. We were fans. We have not been really happy with these final few shows but it all came together last night. In one shot. It was a great ending.

We phoned William, who is home for two weeks. It was a good chat and we are planning to run up to Seattle to see him sometime this summer.

Now we look ahead: today is the all day appointment for mom's Mini Cooper. Lots of waiting. This week, she has doctor appointments on Wednesday, Thursday and Friday. This is also the week I begin to prepare for Anna and Doug's visit, again. It will be their third attempt. Everything is still in pretty good shape but I need to make the to-do lists and decided on what I am serving while they are here. We also will be working on our speeches and list of topics for a round table discussion for the Grand Rounds at my university hospital on May 28th.

Here are the recipes for the week. Remember, these are for people who are on prednisone therapy. We just don't process sugars properly so we eat only 3-4 ounces of protein with lots of non-starchy vegetables. It is amazing what great food can be prepared within those parameters.

Boursin Deviled Eggs - HERE
Cauliflower Casserole - See below
Grilled Cheeseburger Wraps - HERE

Chinese Taco's - HERE
Parmesan Bake Fish - HERE
Grilled Ginger-Sesame Chicken Salad - HERE - Photo above
Sun-Dried Tomato, Goat Cheese and Fresh Basil Frittata served with chicken sausage - HERE

Cauliflower Casserole - can be made with or without chicken

1 pound chicken breasts - cooked and cubed
1 pound cauliflower florets - I use two packages from Trader Joe's
4-6 ounces low fat cheddar cheese, shredded
4-6 ounces low fat Monterey Jack cheese, shredded
(I use Trader Joe's light Mexican shredded cheese instead of the two above)
4 ounces bacon pieces
1 bundle green onions
1/8 t. garlic powder
salt and pepper

Preheat oven to 350 degrees. Steam or microwave the cauliflower until tender. Combine the cheeses in a large bowl. Remove 1/4 of the cheese and set aside. Stir chicken, bacon, green onions and garlic powder into the remaining cheese. Stir cauliflower into the cheese mixture and season with salt and pepper. Pour into a 9x13 baking dish. Top with additional cheese.

Cover with foil and bake for 25 minutes. Remove the foil and bake for an additional 5 minutes.

Makes 4 large servings

Sunday, May 17, 2015

Just the Two of Us Today

Done. The three sets of bed linens have been washed, ironed and back on the beds. It took a total of about three hours yesterday. My morning walk was in cool weather, I walked a bit further than expected then felt it before I made it back to my car. My left hip again. I am grateful that I am having an MRI in two weeks just to see what is happening. I suspect a muscle problem.

I love these quiet weekends. We are staying close to home today. No car rides. No company. Probably a nap. After the big dinner on Friday night, we are eating very lightly. Simply. Life is suddenly very small.

It all begins again tomorrow. Mom has an appointment for the annual maintenance of her Mini Cooper in San Jose. We will be involved in Silicon Valley rush hour traffic. It will be a long day of waiting.

We are both beginning to set out sites forward to the speech for my university hospital's Grand Rounds event on the 28th. Today, we will probably work on our presentations. It will be all about giving our message in the fewest number of words. Time will be of the essence.

Saturday, May 16, 2015

A Night Out

It may have been a quiet day yesterday but WOW, what a night! I was dressed in my finest and ready to go when Michael got home. But NASA, we had a problem. Reservations were for six people. One of the six was not at work yesterday or the day before due to serious food poisoning. He and his wife were not going to make the highly anticipated dinner at the #1 restaurant in SF. Michael's friend and car pool buddy decided not to ask a girl to join him (he is going through a rough divorce), so the three of us decided to go and take advantage of the hard-fought reservation. It was so worth it.

We made it through the city to the farthest north east side avoiding all the areas of highly congested traffic. The darkened windows in a non-commercial neighborhood behind the famous Ghirardelli Square gave no hint of the beautiful restaurant inside. The doors opened. The area is perfectly lit, the area is flooded with huge vases of cut flower arrangements that are breathtaking. Mark said that it almost felt like Las Vegas. Beautiful, elegant, lovely. 

The adventure began with an amuse bouche of a soup. Hello! Michael and I began with the seared fois gras with rhubarb and Mark had the seared Ahi tuna. He said it was the best he had ever eaten. It was then that he realized that this was not a normal restaurant. 

Mark ordered a second course of salmon. It arrived and we all had a sample of the perfectly cooked little medallion of horseradish crusted salmon with dilled cucumbers and mustard sauce. Oh my.

The meat course arrived. Michael loved the pork tenderloin with pork belly, green garlic puree, fava beans, peas, Piquillo peppers and picked ramps. Mark had the seared filet of beef with Swiss chard, potatoes, shallot marmalade and bordelaise butter. Oh my goodness. And I had the coconut Thai curry with shrimp, calamari, lobster, scallops, scallions and shiitake mushrooms. It was marvelous.

The portions were small but were so satisfying and really more food than Michael and I normally eat. The cheese course arrived next. Out of the 25 cheeses offered, four were chosen and paired with grapes and the perfect bread. Then dessert. Michael had the strawberry souffle and Mark had the creme fraiche cheesecake with citrus, spiced pecans and blood orange sorbet. I had a taste. It was creamy, tart and divine.

Suddenly, a little plate of tiny confections arrived. More dessert. Then, with the bill going to the gentlemen, the women are presented with a beautifully wrapped banana coffee cake for the morning. The perfect ending.

Mark was stunned. This really was the finest restaurant he had ever experienced.

We staggered out, filled to the brim and stood near the car for a bit. As we made our way back to the city, we went through the famous North Beach area. Old Italy. Beat generation coffee shops. Strip clubs from the 40s. Famous book stores, butchers and bars. Oh, the bars.

Michael had seen the Esquire's channel's "Best Bars in America" and they mentioned the Comstock Saloon as one of the oldest in the city. I noticed on my iPhone, as we were navigating our way through the city to the freeway, that we were going to go right by it. There was a parking place. It was fate.

There we were. From the #1 place to the total opposite. The bar was packed with loud 30-somethings. We walked in wearing our finest, the manager rescued us and seated us at a table near the bar. Mark and Michael had an amazing cocktail and we watched the scene unfold. Michael and I realized we were the oldest people in the place! Mark noticed the girls! The waiter was just a bit younger than us and he really took care of us. Finally, it was time to go.

We stood out front on this very famous strip of road with lots of locals and tourists out on the town. The manager came out for a chat and a good laugh then invited us back anytime. I guess they don't see people like us often.

As I don't drink, I was the driver home. We made our way through some nasty traffic at MIDNIGHT then worked our way to the coast. Mark had an amazing night out with us. He loved the food and the cocktails but he really loved how we talked to people throughout the night.

My plans for today? Lots of water, a long walk then I am going to wash and iron all three sets of bed linens in preparation of our company in a couple of weeks.

Friday, May 15, 2015

Almost a Quiet Day

It was a quiet day yesterday, but only after complete madness the first few hours! Michael needed to drop the Porsche off at the dealership for some maintenance. I followed. We expected lots and lots of massive traffic so we left the house early. Turns out, no one was out in the world that early, we flew through all the stop lights, the freeways were going at the speed limit and we arrived to the dealership in record time.

It was 7:15 and we were done. We drove the back way to a Peet's Coffee before I dropped him off at work.

While doing the yard work on Wednesday, I did something really stupid for only the second time ever. I cut through the extension cord with the hedge trimmer. Dumb. Michael works near a Home Depot so I dropped by to buy a new extension cord, new hand clippers and some fertilizer for the camellias.

I was home by 8:30. It was a very quiet day after that.

Mom and I will spend most of the day together but Michael and I are so looking forward to tonight. The black Calvin Klein dress is coming out of the closet and we are meeting three other people at the #1 restaurant in the city. I already looked at the menu and am ready!

Thursday, May 14, 2015

Gardening Done - Bring On the Rain

I received the nicest email from the doctor who invited me to the meeting last Monday: "I can't thank you enough. That was an extraordinary discussion. The salience and level of insights was so much greater than it could possibly have been on our own. I knew that it would be effective, the way the group responded to you exceeded my highest expectations."

I blush. I guess we did okay.

Yesterday, I worked up a sweat. It was a good day. After doing the yards yesterday morning, I did some trimming to the Tule in pots on the side of the house and to the Japanese Maple in front. What a difference it made. It was like I gave everything a hair cut! I am so happy that I had the time and the energy to get it done.

After a nice shower, I ran into town then did the ironing and made dinner. It was a full day.

Here are some before and after photos:



Here are the three pots of Tule along the side of the house. Tule is what the Natives used to make boats to fish on the Bay. 

Wednesday, May 13, 2015


After a good workout at the rehab class yesterday, I sat in my chair and moments later I fell asleep. Almost an hour and a half later, I woke up stupid. It took a long time to wake up but I felt like I finally caught up on my sleep. By the time bedtime came around, I was ready and slept almost ten hours.

All this is setting me up for a good day today. I will be doing yard work instead of on the weekend as there might be some rain then. My fingers have been itching to trim the Japanese Maple between the bedroom windows in the front. I want to trim each branch so the house can be seen between the branches. More traditional. A lot of work with just clippers and a tall ladder.

I also love when I have good lunch waiting for me while working. Whopper in a Bowl. For around 200 calories, it includes lettuce, 1/4 pound of cooked ground chuck, 1/2 tomato and a dressing of a combination of 2T. each pickle relish, light mayo, minced onions and 1T. catsup. YUM!

After I do my work and am wet with sweat and dirt, I am going to shower. A lovely hot shower. So, that is my day. No plans to leave the house. Lots of physical work. A sense of satisfaction for a job well done. I'll sleep well tonight!

Tuesday, May 12, 2015


I so wish I could talk about the meeting yesterday, which included a room filled with people from the five other medical centers in the state. What they were working on was rather brilliant and so helpful to the patient. It is quickly moving ahead and will probably have a roll out by the Fall. It was an honor to be part of the discussion.

We still have not recovered from the weekend, both exhausted, both in bed by 8PM last night. We feel so much better this morning, I only have the rehab class today and a rather quiet day ahead. Thank goodness!

Our neighbor Lily sold us some raffle tickets for her school and I WON! Well, there were lots of winners but I just had to laugh when they told me which prize was mine: A free month at Gymtown. Yup. Me. With young children at Gymtown. Not going to happen! I contacted Kelly who lives three houses away and offered it to their adorable year old daughter. They were thrilled. 

Looking forward, we have hard-to-get reservations at the #1 restaurant in the city this Friday night. We are meeting two other couples there. We have eaten there several times and is totally enjoyable, the best service ever and, oddly enough, very relaxed. Not stuffy. We are looking forward to a special night out.

Monday, May 11, 2015

He Phoned Home

Lovely Mother's Day. William phoned while mom, Michael and I were on the escalator at Nordstrom. There was a chair in the Juniors Department near the Cafe, Michael pointed to it and led mom into lunch. So there I sat and had a nice chat with my son. Everything was going well on the tour, he was healthy and we planned a visit up to his area during a break later this summer. They are on their way to a NYC TV show tonight and some good food.

On our way home, we bought food for the week then I made Michael's Deviled Eggs for breakfast and some sausage stuffed jalapenos for both of us. Food for the week is in the house!

Today is a big day for me. After spending some time with mom this morning, I will be meeting with representatives from all the university medical centers in the state to discuss a possible new huge program. It should be very interesting, I will need all my brains and another cup of coffee!

Happy Monday!

Sunday, May 10, 2015

Mother's Day

Happy Mother's Day! I feel so blessed to still have my mom in my life. I learn something from her everyday. She is a continuing tower of both strength and kindness.

I know that sometime today our son will phone from the East coast while on tour. It will be nice to hear his voice. I paused earlier this morning when I walked past all the photos of him in frames in our bedroom. He was such an interesting kid to raise. Definitely his father's son.

The orchestra concert last night was so much better than the horrible dress rehearsal. Thank goodness! The other bass player, Gerry and I felt we played well and we were satisfied with our performance afterwards. The place the filled. Mom totally enjoyed the entire evening and was humming the Rossini Overture all the way home.

I slept like a baby.

We are in the living room at the moment, Michael is on the phone with his mom, the coffee is hot and the Formula 1 race is on. Later this morning, we are going to visit the butcher's, meet mom at her place, have a nice lunch together at Nordstrom then buy groceries at Trader Joe's on the way home. Dinner is already made. All in all, a perfect Mother's Day.

Saturday, May 9, 2015

Work, Play, Eat, Talk

I made it through yesterday on coffee. We got to mom's early morning post-op appointment on time and we made the conference call from our car at Michael's work (with mom in the back seat) right on time before having lunch together.

We realized we have a lot more work to do on our presentation on May 28th at my university's hospital's Grand Rounds. It will be all about sharing experiences succinctly and under five minutes. Oh my.

Today, I will hit the bank and Safeway before cleaning up the gardens and trimming the Japanese maple in the front yard. Michael is driving mom to our house for a simple dinner then we must be at the concert space early. We always run through difficult transitions an hour before a concert and mom loves hearing the workings of an orchestra. Hopefully, the concert will go well.

Afterwards, we will drop my bass off at the house then drive mom home. It will be another late night. On Mother's Day, Mom is going to church in the morning then we are meeting her for a nice lunch at Nordstrom. We didn't want a fancy restaurant needing reservations and crowds and a "special" menu. The cafe at Nords fit the bill. AND we can stay and chat as long as we like.

My mind is on the big meeting Monday afternoon up in the city with representatives from the other university medical centers in the state who will be discussing the possibility of an entirely new program for the system. They want patient input. They may get more than they want!

Friday, May 8, 2015

Fiddling Around

There was a knock on the door around 2:30 yesterday. It was our super secret knock. It was Michael. There was an emergency at the local elementary school and his car pool buddy had to pick up his child so...Michael had to drive him home.

Suddenly, I found myself in the car heading to the city to help British Don figure out his clutch problem in his car. Horrible traffic. We made our way to Don's, had a good cup of decaf before weaving through the streets to the dealership to buy a part. I worked on today's project while they went in to deal with car stuff. Back to Don's where we all looked at the clutch.

Our neighbor's Irish fiddling group was playing at a formerly nasty bar for just thirty-minutes. We rush out of the city, dealt with hoards of people trying to get home and caught a quick dinner at a Taco Bell right on the ocean. Surfers were out en mass and the ocean was churning. We were early to the concert, chatted and totally enjoyed the Irish and Blue Grass music.

But, I was exhausted.

Once we got home, the water bill was in the mail. There had been a demand of an additional 10% decrease of water usage due to the drought and I had taken it very seriously. Were we going to hit the 10% mark? Well, it made my night when I realized that we cut back 75% from the previous billing period. WOW!

With that, I hardly remember going to bed.

Today, mom has her post-op then I am meeting Michael at his work for a conference call from my university hospital regarding our May 18th Grand Rounds speeches. After that? A long afternoon nap.

Thursday, May 7, 2015

Tornado in Kansas, Of Course

A year ago, we were on our 7,000 mile road trip. As we watch the national news, we are so happy not to be roaming around the middle of the country right now. The tornado damaged in Oklahoma looked horrible. We would have been right there when the tornado set down if we were on the road this year. So many storms along Highway 40 and even snow up north on Highway 80!

On one of our first big trips in 2000, we were in a brand new red BMW and learning how to travel out of suitcases. This was before I was ill. We never made hotel reservations as we didn't know how far we would feel like driving that day and I didn't need oxygen waiting for me at the hotel.

It had been a long day: Salt Lake City then south through Denver before heading east again to Kansas. Ah, Kansas. The Land of Oz. Flat. Endless corn fields. A few miles past the state line, we noticed people stopping along the interstate and looking at the horizon. What did we know? We were from California. We decided to stop for the night in a little town consisting of a gas station, a church and a Walmart. Next to the Walmart was a hotel.

"Do you have a room available for the night?" we asked. She looked at us in horror. "Don't you know a tornado is due to set down here in 10 minutes?!?!?" That was why people were out of their cars looking at the sky!

I asked if we could park our new car under their front entrance to protect it. She told us it the whole front may collapse and it would be safer to take it to the Walmart parking lot. It would have a chance there.

There was one room left. The honeymoon suite. We were not in it for very long as all the hotel guests and staff were instructed to sit in a hallway on the first floor away from all the windows. We waited. We heard the winds and the hail. We worried about the car.

The tornado set down 10 miles away. Waaay too close. After a couple of hours, we headed back to our room and slept the night. In the morning, we made our way to our car. We were rather surprised to discover that it was fine.

It was our first and only tornado. I never want to deal with another one. After six cross-country road trips, we have been blessed with exceptional weather, no car problems and missed storms or tornadoes by a day, expect that night in Kansas. It will never be forgotten!

Wednesday, May 6, 2015

Sleep Issues

Michael is taking the day off of work but we have his 6-month check up with the neurologist early this morning. He has done really well with the anti-seizure meds and eating properly to control his blood sugar. Hopefully, the doctor will consider taking him off the drugs.

It was wonderful to return to the pulmonary rehab class yesterday. I had missed three classes, there were two new people present and I had lots of chats and laughs. One of the nice guys, who lost his wife several years ago, is only in his late 60s and very lonely. Because he requires oxygen 24/7, he struggles with being mobile. With all that, he has depression and anxiety issues. Yesterday was the first time we talked about it all.

He has been having an issue with not being able to sleep at night, will then sleep during the day and just feels like doing nothing. Not good. It is a downward spiral.

I shared with him that I need the TV on at night so my mind won't start going to the negatives and worries if I wake up. I can watch some benign program and drift back to sleep. We also talked about melatonin. It is how I get to sleep. Remembering that I had an unopened bottle at home and could bring it to class on Thursday, I offered to give it to him to see if it helped him sleep.

He told me that it was nice to hear that other people also had the same issues.

And isn't that an important part of going to the rehab class? Learning from each other. Supporting each other. Being with people who understand.

Tuesday, May 5, 2015

A Mystery Solved

When I was going through the Worker's Comp lawsuit at the school where I got my ILD, there were whispers of a previous lawsuit by a family. Both children were ill. Extremely ill. The mom was shouting from the rooftops that it was caused by mold at the school. Then, just two years later, I showed up with a disease specifically caused by an antigen from an environment of mold, fungus or organic dust.

Some wonderful person with inside information phoned me, gave me this information and that was what gave me the confidence to go forward in my lawsuit, which we settled four years after I left on disability.

I am a member of the school's Facebook alum site and once a month, they list all the former student's birthdays for the month. If they have a Facebook account, it is linked. This morning, I was looking at the list, visiting some of the sites to give my best to students I haven't seen for many years, enjoying the photos and reading what they are doing in their lives as adults.

There was the name of the student who was so sick. I clicked onto the site.

There were lots of birthday wishes but almost everyone's comments included what a strong person she was and wishing her healing. As I kept scrolled down, it finally showed up. She had Lyme Disease. All those many years ago, she wasn't suffering from mold exposure, it was Lyme Disease. Apparently, she is still really ill.

The school was on 33 acres filled with foxes, large cats and tons of deer. Often, I thought there were more deer than people. They were everywhere. Along with the deer, there were ticks. We used to have to check the children after playing in the brush or "butt sliding" down a hill.

Sometimes on the weekends, I would take William to the school so we could hike the trails and play on the butt slide. He came to me days after one of our visits and said he had this thing on his knee. It was a tick with the perfect bulls eye of Lyme Disease. There had been a small hole in his pants while on the slide. He had already picked the body off but the head remained. I rushed him to the doctor, they removed the head and began a large run of antibiotics. We learned that not all bites show a bulls eye and we were lucky.

Those many years ago, the family lost their mold lawsuit when they allowed an inspection of their home, mold was present and they could not prove whether the possible mold illness was from the school or the home.

Towards the end of my Worker's Comp lawsuit, the other side demanded an inspection of our home - four years after I left the school. That seemed totally unreasonable to me. How would they prove that same mold was there four years earlier? We fought it, my lawyer was brilliant and the request was denied. They appealed. That was a difficult time waiting for the decision. The appeal board agreed with the judge and they were not allowed to inspect our home. The suit was settled shortly afterwards.

I had wondered about this family for years and whether the former students were still ill or were healthy adults. The older child is apparently doing really well. Thankfully.

Monday, May 4, 2015

Unusual Weekend

What a weekend! My sister Lee and her husband Jeff came to town this weekend because their daughter gave them tickets to The Book Of Mormon in the city on Sunday afternoon. They spent Saturday lunchtime with mom, had a great lunch where we will be taking her for her birthday in August and had a fantastic time chatting in person. It was a special treat for mom to be with her daughter.

We had a ball getting caught up on each other's lives through cocktails and dinner. All turned out well, they loved the chicken, creamed spinach, corn salad and strawberry pie. It was nice to have time with them. No holiday. No celebration. Just the four of us.

In the morning, we drove to the dive in the little town south of us and had breakfast, walked through the shops then headed home along the ocean. Lee double checked her tickets and was shocked to see that the musical started at 1:00 and not 2:00 as she had expected. It was 11:45. They jumped in the car and took off. We got a text 40-minutes later that they had parked. A miracle. I so hope they enjoyed it all and their seats were good.

We hopped in our car, went over the hill, ran errands and dropped in on mom. I am meeting her this morning at 7:15 for an early morning bone scan followed by a doctor appointment. It is going to be a long day.

What a nice weekend. A different weekend. Now, into a very busy week.

Saturday, May 2, 2015

Company Arrives

I was the Energizer Bunny yesterday. Non-stop. No rest. It began at 7AM with paperwork and the house being picked up then 9AM into the gardens. Five hours later, the yards looked fantastic. The only chore not completed was the thinning of the Japanese Maple in the front between the windows. I will do it next week. Other than that, all the areas of the garden look neat and clean.

Once I moved inside, the cooking began. I made our dinner of almond encrusted fish over a bed of wilted spinach; my lunches of onion, arugula and goat cheese tortillas; deviled eggs for Michael's breakfasts and strawberry pie with oatmeal crust for our company's dessert. It took hours. Then I cleaned the kitchen.

Everything is ready for Lee and Jeff's visit this afternoon except I need to quickly vacuum the house, buy a couple of items at Safeway, go to the bank and maybe sneak in a nap. Oh, and a shower.

Michael had a rough day at work so we sat on the swing in the yard and talked for a couple of hours last night. By the time I crawled into bed at 8:30, my mind and body just couldn't let down. I slept until 12:30 then HELLO! Wide awake. I finally moved into the chair and fell asleep by 3AM.

Caffeine will be important today.

My hip feels just fine this morning, I was amazed at the level of energy I had yesterday and I was breathing really well. Rather proud of myself. Feeling light and loose. Moving well.

Bet I lost a pound or two.

Looking forward to Lee and Jeff's arrival after their lunch with mom.

Friday, May 1, 2015

Healthy Hips

My appointment on the new campus of my university hospital was fascinating. Several major buildings, a conference center, restaurants and massive parking structures were laid out surrounded by beautiful landscaping. It was so easy to get there, parking was inexpensive and I walked up to the new cancer hospital trying to get the hip pain to kick in before the appointment. But still, I was really early. They took me in for an xray then I met with the doctor and gone by the time of my original appointment. Wonderful.

The good news was that they think I had a major pulled something. The xray showed healthy hips, thank goodness. But, it could be something specific that, if taken care of when it is very new, could avoid a hip replacement later. Soooo, I am still going to have an MRI, just to be sure.

I was home by noon, ate a nice lunch then washed the windows. It was a lot of work! I was so tired afterwards that I slept for over an hour. We had dinner then I went back over the pass with Michael while he painted something. The weather was so beautiful, we drove home at 8:30 with all the windows down on the car. So rare.

Today is my big work day. It is warm but not hot so the yard work will be a bit easier. I'm starting in the back and working my way to the front. It should be an all day event. I also need to make the strawberry pie in oatmeal crust so it sets up all night. If I have energy, I also wanted to dust and vacuum the house. That probably won't happen until tomorrow morning, though. I am not expecting Lee and Jeff until around 3:00, so I have some time to get things done tomorrow.