Living Well with a Bad Diagnosis - Lung Disease

Friday, October 31, 2014

Rainy Halloween

Happy Halloween! Rain should be here just in time for the victory parade in San Francisco! Thousands and thousands of people will line Market Street all the way down to the Civic Center Plaza for the ceremonies. I bet there will be a surprise appearance. One year, Tony Bennett sang "I Left My Heart in San Francisco." During the season, it is played over the sound system at the ballpark after each game.

Rain will take a break this afternoon but will return around 5PM to irritate the Trick or Treaters. Winnie and Oliver probably won't even notice, if there is candy involved. I can't wait to spend some time with them, share some apple cider and watch them eat Halloween cookies. 

After hauling in a lot of groceries yesterday, I noticed that I was finally feeling thinner. Hopefully, those two pesky pounds are gone. It was another very full day without much downtime. The grass did get cut after the rehab class and dinner was made and in the refrigerator waiting for Michael to arrive home. In the meantime, Wayne was here to oversee the delivery of our new side garage door. He and Michael chatted for over an hour so we finally ate our dinner at 7:30! Thank goodness it was a light dinner! It was great to hear about Wayne's boys, job offers and report cards!

This morning, I will workout at the other rehab, make the mortgage payment, pay the AT&T bill, drive mom for the shot in her eye then we will have some lunch.

William is working at festival in Paris this weekend. Paris. It was where we were heading when I bumped head-on with Dr. K. for the first time. She banned all plane, boat and rail travel. One day, I hope to spend some time in France and use my limited high school and college French. Provence! Lyon! Bordeaux! Maybe one day.

Thursday, October 30, 2014

Torturous Baseball

There was an orchestra rehearsal last night. If either of the two World's Series teams had a blowout, I would have packed up my string bass and hit the door. But, when it was time to leave, I was biting my nails. The score was 3-2. Giant's were ahead. What to do? Well, I had to stay and I am so glad I did. The final three outs were just a taste of their entire torturous season. Not only are the players exhausted but we fans are exhausted, too! The big parade in the city is tomorrow. What a wonderful year it has been!

I was a swirling dervish of activity yesterday. Never a pause. I had a list! The guest room is finished and waiting for Anna and Doug's visit on the 8th. The new sheets, blanket and bed skirt look fresh, clean and welcoming. Everything was ironed before it was put on the bed. While doing the laundry, we tore the refrigerator apart and cleaned ever bit of it! Then, we filled in our election ballot and put it in the mail. We drove into town so Michael could get his flu shot! I then did the recipes for the week and my shopping list for today. While I had Michael corralled, we talked about the food for Anna and Doug's visit and I was able to cobble together a list of food to buy later in the week. Then baseball. It was a fun, busy and satisfying day.

Today, I am going to Safeway this morning then off to the rehab class. Afterwards, I will visit the butcher and Trader Joe's before coming home to cut the lawn. Rain is due tomorrow. And Saturday. And Sunday. Everyone is rejoicing.

Here are the recipes for the week:

Breakfast/Lunch:
Prosciutto and Egg Breakfast Pizza - HERE
Spinach Deviled Eggs with Crispy Prosciutto - HERE
Smoked Salmon Dip - HERE

Dinner:
Pork Chops and Fried Cabbage and Onions (applesauce and fingerling potatoes for Michael - HERE
BLT Chicken with a side salad - HERE
Shrimp Salad with a roll for Michael - HERE

Bon appetit!

Wednesday, October 29, 2014

A Small Bottle of Water

Oliver did not need me yesterday so I settled into the pre-game fun but, by the second inning of the game....YIKES! It was a rough night!

Before the rehab class, I did run to Ross Stores, found fantastic new sheets for the guest bed for just $29.00 but they only had velour-type blankets. Off to Macy's, I found a perfect Ralph Lauren white textured blanket on sale for $39.00 reduced from $100.00! I am going to iron the sheets then put everything on the bed today.

Michael is taking the day off to do some errands. This afternoon, I am taking him in for a flu shot! I also need him to help remove the glass on the main shelf of the refrigerator for a good cleaning. It is a two man job.

I was given a gift yesterday. Kathy at the rehab class, travelled to Europe and went to Lourdes, high in the French Pyrenees. If you have never seen the old movie, Song of Bernadette about a "lady" who spoke to a young child in the city dump, it is worth the viewing. The "lady" had Bernadette dig in the dirt with her hands and a spring began to flow. The water from this spring has purportedly cured illnesses and, in the movie, blindness. A visit to this holy site was on my list of things to do just before Dr. K. banned me from air travel.

Kathy told me that it was amazing to see the beautiful church surrounding the spring and to be apart of the entire process. Men and women are separated. She was taken into an area surrounded by draperies, nuns had her remove her clothing, a wet sheet soaked in the spring water was wrapped around her, prayers were said, she dressed and left.

She told me that even though she is not "cured" she was feeling remarkably better. Her strength and energy level was greatly improved. She was doing physical things she has not been able to do in years. She was hoping it lasted.

Yesterday, she gave me a small bottle of this holy spring water. She said to bless myself with it and say a prayer for healing and strength.

Tuesday, October 28, 2014

Playing Backup

Here are a few photos of the new steel planter, which is still gray but turning rusty orange/brown right before our eyes. The Horsetail Bamboo should grow up to 48" high.

Warm days and cool nights. Halloween around the corner. Rain is forecasted for Friday. It must be Fall. Today is a simple day featuring rehab class after a quick run to Macy's to look for bedsheets for the guest room. Maybe Oliver. Oliver? Yes! Natalie sent an email yesterday asking if I could be backup in case her sitter was delayed in travel. It would happen at 5:00 and Natalie would arrive home around 7:30. Her husband is in New York for a friend's wedding and not available to help. They have a weird TV situation so I don't think I will be able to watch the ballgame... will tape it on my way out the door if I have to play backup. If I get to spend a few hours with one of my most favorite kids.

Natalie and the kids are invited to our house for trick or treating again this year. Their complex does not allow it, we have a very safe neighborhood and I feature apple cider for the kids and beer for the adults. Always a hit!

I took a walk along the ocean in the late afternoon yesterday but I was only able to do about 40 minutes. It was cool and very breezy. The good news is that I no longer have pain down my right leg. My back is in alignment and feeling good! Amazing what a walk will do!

I have had no side effects from the flu shot and it will be my major focus to have Michael inoculated. Part of him wants it but the other part doesn't. I just need to remind him that it could kill me if he brings it into the house. That usually does it. If not, a detailed reminder of how he felt having the flu four years ago should do the trick for the treat of the shot.

Monday, October 27, 2014

Chores are Done

Thanks to the Giants for an exciting evening but not too exciting, thank goodness. A nice early lead allowed me not to have to pace with my hands over my eyes. We have a day off before it begins again from Kansas City on Tuesday.

All my chores are done. The two big ones were to run the cycle for the oven to be cleaned and to set up the new, heavy steel, outdoor planter. Success on both! This was the first time I have cleaned the oven since we bought it. I ran it on the longest cycle of 4.5 hours, it looks like new and was cool enough to wipe down late night. The planter is...planted! Michael had to lift two of the sandstone slabs, remove some sand and reinstall them. The large vine root had done its damage. We settled the planter on three 2x2 pieces of wood to keep them off the patio and to allow maximum drainage. Then 4 cubic feet of potting soil was added. Not enough! Thankfully, I had a small bag of soil in the garage, threw it in and it was perfect. The five Horsetail Bamboo plants looked great against the fence. Sleek. Asian inspired. No maintenance! The planter has even begun to rust to a lovely dark orange/brown.

Mom has rehab early this morning so I can't workout at the other rehab before I see her. My goal is to take a walk along the ocean later this afternoon. Somehow, I pulled something and there is a slight nagging pain down my right leg. Nothing serious. Just there. I think if I warm up and have a nice walk, it will help align whatever is out of whack. Gotta keep moving.

Sunday, October 26, 2014

Low Carb Dinner with Friends

Dave and Lori are fully on the low carb wagon for health reasons. They have lost weight and will be adding exercise beginning this week.  They are not considering it a diet but a life change. They have been on their bandwagon for about six months and have lost weight but there is more to go. Dinner last night was the best BBQ Rosemary Chicken I have ever eaten: cooked yet juicy and so flavorful. They also served roasted carrots and a nice salad. Perfect!

Joining us for dinner was our old friend, and Dave cousin, Tim, his wife, her mother and their daughter arrived after the daughter's ballet performance at her college in Marin County. It went well and she was pleased with her performance. We had a ball. And we left at 10:00 so I am not wrecked this morning.

Do I mention that the Giants rallied and won the World Series Game #4? Game #5 is this afternoon before they fly to Kansas City on Monday.

So, on the menu of things to do today: walking in the sunshine along the ocean cliffs, vacuuming the corners of the guest room, washing and ironing the ten shirts I discovered were soiled while getting dressed last night, turning on the self-cleaning oven for the very first time, filling out our ballots, planting Horsetail Bamboo in the new planter then preparing the list of places to take Anna and Doug and what to have in the house to serve for light dinners. And cocktails.

A Sunday. Happy Sunday to you.

Saturday, October 25, 2014

Lose a Little

RAIN! My garden is so happy. The baseball players will not be too happy with it later today but...we need the rain. The air smells so good and clean. The grass was cut yesterday afternoon so I will keep myself busy inside today instead of my usual Saturday gardening. The guest room will be first then I will continue thorough the house! Anna and Doug are coming in less than two weeks!

I am feeling good, rested and my energy level is great. I will be bringing bourbon and rosemary soaked roasted pecans as an appetizer. The goal at Dave and Lori's dinner party tonight is to LEAVE EARLY! Before midnight! I have noticed that it takes longer to recover from a big event out of my normal routine. My decreased stamina and increased recovery times prove to me that the march towards transplants is moving forward. I must adjust for this change but still go out. Still have some fun. Still live.

Since I found out I gained two pounds last week, I have been very careful about my intake of calories and my output of exercise. It has paid off. I feel thinner, my shorts were looser yesterday so I bet I have lost a whole pound! It would be great to get an additional couple pounds off before Anna and Doug arrive, as I know we will be eating out a lot. Next week will be devoted to daily exercise and 1200 calories a day.

Dare I say it? GO GIANTS!

Friday, October 24, 2014

Exercise, Testing for Lungs, Guests

This week, I have exercised every day since Tuesday and will hit the other rehab this morning. It is amazing how much looser I feel as well as standing taller and breathing better. Consistent exercise. The answer to a better quality of life, especially for those of us with a lung disease.

One of the newest members of the rehab class has a connective tissue disease as well as an ILD. A double hitter! She only was diagnosed with the ILD a year ago but has quickly declined. She told me yesterday that she is having the testing on her heart today as part of the invasive testing for lung transplants. She has already completed all the other non-evasive testing like a mammogram and colonoscopy.

Other people I know who were waiting for transplants looked horrible. Close to death. She looks fantastic. Super healthy. Clearly, she has been on prednisone and is carrying extra weight. I would guess that she is between 20-25 away from the needed BMI for transplants so I was surprised that she is  this far into testing at her current weight. I hope this all works out for her and she gets her new pink lungs as she is so lovely and nice.

After work last night, Michael and I put together the new steel 4-foot outdoor planter to replace the vine we removed a couple of weeks ago. It was a lot of work! And heavy! It is finished and in place. Now, I need it to oxidize quickly so it magically turns into that nice shade of orange/brown.

As rain is expected tomorrow, I need to cut the grass after spending the day with mom today. While it rains, I will begin the cleaning of the guest room, polishing of the bits of silver in the house and straightening out the kitchen drawers all in anticipation of Michael's sister and her husband's visit in less than two weeks. Yikes!

Go Giants!

Thursday, October 23, 2014

Two Pounds

I am on the wagon! Every bit of food is being counted and weighted for the next two weeks. I gained two pounds! I know that sounds like no big deal but the problem is that two pounds can quickly grow to four then before a blink of an eye, all ninety pounds are back! It must be stopped at two.

After the weigh-in, Michael and I spent an hour together for a rare weekday lunch (salad and chicken). It was at a little place that will probably be a franchise one day. Excellent food in a fast food setting. We sat outside on the warm patio and chatted. It was such a nice way to waste one of the hours before I could go home. Our street had its finishing coat laid yesterday and looks so clean and new. But, no one could drive on it until 4:30.

After lunch, I did a Macy's run to buy Levi's for Michael, bought potting soil for the new outdoor planter, drove my way to the other rehab for a fantastic workout, got my flu shot, grabbed a cup of coffee before parking near our street waiting for it to open.

It felt fantastic to be back in my little home after a long day, I picked up for the housekeepers due this morning, prepared dinner and watched the World Series. It was an ugly loss! Michael and I were able to spend another 40 minutes together before I had to leave for orchestra rehearsal.

It was one of those magical nights. All three pieces came together and was so satisfying to play. All the nasty runs and rhythms magically flowed from my fingers. Franz von Suppe's Morning, Noon and Night in Vienna Overture; Smetana's The Moldau and Beethoven's Seventh Symphony all just blossomed under my hand. What a fun night!

Mom and I are going to have some Starbuck's together this morning then I am off to the rehab class for a good workout. I have two pounds to lose!

Wednesday, October 22, 2014

Let the Cleaning Begin!

World Series Game 1 - Done. Well done. Onto Game 2 tonight then come home boys!

I was lying in bed this morning wondering if I was finally well enough to get a flu today. It should have been done in September but I was fighting pneumonia...not a good time for a shot. I thought the cough was back last week but my workout at the rehab class yesterday went well with little coughing.

Today is the day.

It is going to be a lot going on today. This morning, we have to be up, showered and out the door by 8:30. The final coating of the street begins at 9AM and I will not be allowed to return home until 4:30PM. The nutritionist is planning to see me in the city at 10:30 then done. I have a whole day to myself. Mom volunteers at the library on Wednesdays so she is busy. Hmmmmm! Guess I should bother Michael at work!

The two of us are going to lunch together, afterwards I will drop by Macy's to see if the Jones of New York corduroy pants are in yet then I will work out at the other rehab. That should waste enough time for me to arrive home around 4:00. Maybe they will let me onto our street early.

And to finish out the day, orchestra rehearsal this evening!

I didn't sleep well last night as I was making lists in my sleep. Long to-do lists. Last evening, Michael's sister Anna phoned. She and her newly retired husband Doug are having a ball together living their retired life. They so enjoyed their three-week trip to Europe and the Danube River Cruise and now are looking for a new adventure. They are coming to visit us.

Anna. She is the neatest, cleanest and most organized human on earth. I keep looking in my kitchen drawers and thinking about the dust behind the headboard of the guest room and I begin to quake. They will arrive on November 8th and stay for four full days. And I have a birthday in there.

So, let the lists begin! I only have two weeks to get everything together!

Tuesday, October 21, 2014

Attack on the Mold

I am always on the lookout for mold. It is the enemy. It must be destroyed. As I was picking a sock off of our bathroom floor, I noticed that there was mold on the caulking around Michael's sink. Then I noticed a small bit behind the faucets. He is going to find a small spray bottle in the garage this morning so I can bleach and brush it away. I thought it would be best to apply the bleach in the early morning so we have the entire day for the smell to dissipate. The ceiling fan and a portable fan will be on and the windows will be opened while I wear my oxygen and a mask.

Yesterday at the butcher's, I started to chat with a nice young woman about chicken. They really have the best chicken I have ever eaten. She had overheard us talking about the Pumpkin Festival, knew where I lived, asked a few questions about the local schools, I mentioned the school where I got sick and BOOM! It turned out that I was her kindergarten aide in 1991. I knew her when she was 5-years old and I had just seen a photo of her brother on the Facebook alum site. I asked about her mom and dad. They lived in the same town as the goat farm and the dive where we take everyone who visits but after the 1989 earthquake, the earth shifted so much that they lost their water supply. They had to leave the property until water could be re-established and had to live in a variety of housing. It was a lot of drama for the two young kids.

"You guys still here?" the butchers asked. They were not surprised that we had a past together and said to her, "She knows everyone!"

Did I mention that we are so excited for the beginning of the World Series this evening?

Monday, October 20, 2014

Pumpkin Festival

We fought our way into town, bought a parking place at the dentist's office then walked the entire festival, Michael had his pumpkin roll and coffee, we split a hamburger, we walked some more, we bumped into several people we knew then after an hour, we were done. Done with the crowds. We realized that we don't do well around groups of people anymore.

The ride home was quick, we watched football and napped before going to Mark's parent's house at 3:00. We thought it was for a glass of wine...then dinner was served. We got home at 7:30.

When I have company for dinner, it drives me crazy when I am told that "I can't eat..." fill in the blank: meat, dairy, carbs, anything with a face, anything cooked. When I started this diet, I made a vow that if some kind soul invited us to a meal at their home, I would try to choose the best foods for my diet but would not mention my diet restrictions. Even if pasta was involved, which is my biggest no-no. It was the case last night. They served a locally known meat recipe which cooks for hours and is served with a sauce on a huge roll. This surely was a treat as this meat was specially prepared for the Chamarita Festival last May. It has been decades since we had our last taste of it but, it was so salty! Our fingers are swollen this morning! I have a day to get rid of it as I weigh in on Wednesday morning.

This morning, mom has a physical therapy appointment to help her with balance and walking. She refuses to use a cane, which would help a lot. Oh, vanity! Afterwards, we will buy groceries and have a nice lunch.  A small lunch.

Sunday, October 19, 2014

Into the Crowds

Suddenly, it is really Fall. The fog is in this morning, the ground is wet from the mist all night and my plants are so very happy. I spent over four hours working in the garden under the warm sunshine yesterday. I trimmed all four of the huge hydrangeas in preparation of their new growth. The garden recycle bin is full once again.

We got a notice that our street will be closed from 9-4:30 on Wednesday for the final surfacing of the street. The only problem is, all the access streets will also be closed either Tuesday or Wednesday. In other words, we will not have access both days. That will be a challenge!

Yesterday, Michael went over the pass to get some of his own work done and tried to drive home around 3:30. He arrived at 5:15. He had to take the long way through the redwoods but hit a massive jam on the coast highway. He snuck through an area unknown to tourists and was able to save about thirty-minutes of traffic. We stood together in the garden while I watered (we can only water after 5PM because of the drought) and chatted about our day before dinner. I was snoring before 8PM.

We will be together all day today. We will work our way into town for the Pumpkin Festival this morning, run into thousands of people, we always seem to bump into old friends, pumpkin rolls will be eaten then we will hang out with Mark's family for a bit. They adore Michael and want to meet me.

Happy Sunday.

Saturday, October 18, 2014

Pumpkin Festival Weekend


The Pumpkin Festival weekend begins today. The roads are already crowded with cars filled with families making their way over the pass to the massive festival. For blocks down the center of Main Street, crafts people are selling their goods, food is for sale made by local organizations, a local parade features kids, the high school marching band, and horses. I am staying home to work in the garden. The hydrangeas need to be cut back and the grass needs a'cuttin'. It is beautiful here on the coast - sunny, calm, cloudless sky with temperatures expected to be in the high 60s. Just a perfect Fall day.

I think I am almost recovered from last weekend so a flu shot is in my future next week. It is important to feel well before the shot. Before I got sick in 2003, I never had a flu shot and can really only remember having the flu once while working at the school. Good immune system. If I even think I am getting the flu, Dr. K. has told to me get to the emergency room. I am the type of patient who will need hospitalization and possibly need help breathing. Scary. In other words, the flu could kill me. That is the reason we avoid groups of human and refuse to shake hands this time of year.

But, we are going to the Festival early tomorrow morning (it is outdoors and it will not be crowded when we sneak into town). Michael wants a delicious Pumpkin Roll with some coffee. The recipe is below.  I want to find something for the garden. Afterwards, we have been invited to Mark's parent's house here in town (Mark car pools with Michael). I have heard about them from Michael and rather excited to meet them.


Pumpkin Festival Pumpkin Rolls

CAKE
         3 eggs
         1 cup sugar
         2/3 cup pumpkin
         1 tsp lemon juice
         3/4 cup flour
         1 tsp baking powder
         2 tsp cinnamon
         1 tsp ginger
         1/2 tsp nutmeg
         1/2 tsp salt
         1/2 cup walnuts, finely chopped
         powdered sugar to sprinkle
FILLING
         1 cup powdered sugar
         4 T butter, softened
         6 oz cream cheese, softened
         1/2 tsp vanilla

Directions
         1 
Preheat oven to 375°.
         
         2
 For cake: liberally spray 15x10x1" jelly roll pan. Beat eggs on high speed for 5 minutes, gradually beat in sugar. Stir in pumpkin and lemon juice. Stir together flour, baking powder, cinnamon, ginger, nutmeg and salt. Fold into pumpkin mixture. Spread in prepared pan. Top with walnuts. Bake for 15 minutes. Sprinkle powdered sugar onto a fresh dish cloth and turn cake out onto cloth but not upside down. Starting at narrow end, roll towel and cake together, cool and unroll.
         3
 For filling: combine all ingredients and beat until smooth. spread over cake, roll up and chill. Slice and serve.


Friday, October 17, 2014

FIBROTIC DRUGS APPROVED BY FDA!!!!!

Huge news! The FDA approved both of the anti-fibrotic drugs to treat IPF that we have been writing about for a couple of years. After spending $100M in studies, pirfenidone is finally approved here in the US. The other drug, nintedanib, was already a drug but has just been approved to treat IPF. This is a very big deal.

To get further information, see the information below.

A big day for those of us with an ILD. Hopefully, one day soon these drugs will also be prescribed off label to those of us who have an ILD other than IPF.


email header
 

A new day has come!  The FDA has approved not one, but two drugs for Idiopathic Pulmonary Fibrosis.  Yesterday, the FDA approved Boehringer Ingelheim's Ofev (nintedanib) and InterMune's Esbriet (pirfenidone).  Please see links to the press releases the Coalition for Pulmonary Fibrosis sent out in response to the news below.  Also, there is important information pasted below that we are forwarding from the FDA.  There will be a conference call tomorrow (Friday, Oct. 17) for all stakeholders including patients, caregivers, family members, advocates, researchers, clinicians and others. See below for information on how to join the call.
Sincerely, 
Mishka Michon, CEO, Coalition for Pulmonary Fibrosis

Click the headlines to view full content:
Two FDA Approvals on Same Day Renew Hope for Pulmonary Fibrosis CommunityIPF Patient and Actress Barbara Barrie, Others Respond to News
Information from FDA on Conference call on Friday:
The FDA approved two new products for the treatment of idiopathic pulmonary fibrosis: Esbriet (pirfenidone) and Ofev (nintedanib).  Both products were granted FDA fast track, priority review, orphan product, and breakthrough designations.  They were also both approved ahead of their respective prescription drug user fee goal dates.  Technical experts within the Center for Drug Evaluation and Research would like to communicate with clinicians and other stakeholders about the use of Esbriet and Ofev, including a discussion of clinical and safety considerations.  You and your colleagues are invited to participate in a stakeholder call this Friday, October 17th at 2pm EST
More information:
  • Stakeholder Call- Live
    • US Dial-in: 888-469-1066; passcode FDA
    • International Dial-in: 1-312-470-7282; passcode FDA
  • Stakeholder Call- Replay
    • Available one hour after the call ends until November 17th
    • US Dial-in: 888-325-4186; passcode 45997
    • International Dial-in: 1-402-998-1251; passcode 45997



 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Thursday, October 16, 2014

Worries and a Celebration

William flies to Budapest this afternoon to begin a nine week tour in Europe. Flying. Rather dicey right now. Then he mentioned that he was fighting "Montezuma's revenge" from his tour in Mexico City last weekend. A mom's mind can wander, especially since they flew out of Texas to Mexico...but, no fever. He said that there will be a lot of flying for the first part of the tour then they will have their own bus. I still worry.

The Giants fought their way to a 3-1 lead over the St. Louis Cardinals last night. During the orchestra rehearsal, the trumpet player kept giving me updates, I phoned Michael during the break then about 9:20, I heard, "Psst," from the trumpet section and he gave me a thumbs up and the score with his fingers. I raced home to see the highlights and found Michael almost dancing with joy. What an unconventional team!

My health? I am a bit worried. I am coughing again when really pushed. It will be interesting to see how I do at the pulmonary rehab class today. It is hard for me to slow down though I did take an almost two hour nap yesterday, so I was in good shape for the late orchestra rehearsal last night. I am feeling good and very rested this morning. We are planning a rather quiet weekend even with the famous Pumpkin Festival and an expected hundred thousand people invading our little town. I will be working in the yards.

Wednesday, October 15, 2014

A Day to Recover

Wait! What is that sound? Rain! Marvelous. Not much but we will take it! Yesterday, the complex was paved for the first time in the 31 years we have lived here. First a layer of hot tar then bits of rubber pebbles before a final covering, which will be laid in the near future. It was fascinating to watch. Lots of happy people driving big pieces of equipment.

I did nothing yesterday. I was totally exhausted from the wedding then Monday's dinner at the Stewart's did me in. Today, I need to return the wedding jewelry to the bank vault and a run through CVS before the orchestra rehearsal tonight. The bed sheets will also be washed and ironed today. I am trying to work my way back into doing things. After ten hours sleep last night, I realize it is going to take a few more days of extra sleep to completely recover.






Tuesday, October 14, 2014

Just a Weird Day

So many wacky and weird things happened yesterday. Mom and I arrived early to her hearing aids appointment at Costco then made it though the entire warehouse for well under $100.00. Dangerous place! We went to lunch at Nordstrom and chatted away before food shopping. Heading back over the pass, it was PACKED. I had forgotten it was a holiday, everyone was here to watch the big pumpkin weigh off or to visit one of the pumpkin patches. I was tired but now I was tired and running late.

After a quick run to Safeway, I got home, settled in for a few minutes before getting ready to make an appetizer and change for the dinner party last night. Around 4PM, the door bell rang. Outside was a HUGE man asking if the Porsche was for sale. We are in a housing complex and our little cul-de-sac is right in the middle of it all. We never get people wandering around this far into the confusing complex of windy narrow streets with no sidewalks.

No, not for sale. Okay. He and the driver of the 1990s tiny, old car with front end damage took off. It just didn't feel right. This guy said he had a really expensive Porsche and was looking for a less expensive one so he could get rid of his large car payments. It was a few minutes after he left that it began to feel that it all just didn't feel right. I realized that this guy would not fit into a Porsche.

I phoned the Sheriff dispatch non-emergency number to file a report. She said that it sounded like it was a check to see if someone was home for a smash and grab. A kick through the front door on a very quiet street with no one around.

Great.

Michael phoned. He was trying to get home from work and discovered that the traffic was backed up for miles on the other side. He was going to take the long way to the coast through the mountains and would meet me at Dave and Lori's.

Now, I am really late. I throw on some fresh makeup, change my clothing, fluff my hair then make the appetizer. Just as Michael hits Highway 1, I head out the door to the Stewart's. What a day. Nothing worked out as planned but, we adjusted and had one fantastic night at their house. We even had a brief conversation with the bride and groom from their Hawaiian honeymoon. Dinner was simple and good. We didn't get home until 11:30PM.

I am staying home today. I am exhausted and really don't want to get sick again. So, I am thinking about cooking and napping and I may even do a bit of trimming in the yard, if it doesn't rain. It is looking a bit dark right now. We are also scheduled to have the complex resurfaced today. Did I mention the Giants game begins at 1PM? Yes, I am staying home.

Monday, October 13, 2014

Recipes for the Week

Whopper in a Bowl

I got through yesterday with the help of a nap and Michael bringing dinner home with him. The to-do list was completed plus I did the laundry and ironed. I slept like a baby last night.

Mom has an early appointment at Costco for a hearing aide checkup so I will be hustling out of here to the butcher's before her appointment. We have errands and a few things to do together but I plan to get back over the pass in time to make an appetizer for tonight. We are going to Dave and Lori's for dinner with his cousin Tim and his wife before they leave for home tomorrow.

I am tired again and realize that I have to take it easy. Pneumonia visited just a few weeks ago and may want a return appearance if I am not careful. My focus this week will be to exercise everyday, eat well and sleep. Blessed sleep.

Here are the recipes for the week. I always forget to mention that I eat a lot of cabbage including at breakfast. There is always some in the house and ready for a bit of salad dressing. Also, if I am really bored with breakfast, I love having Wasa Rye Crackers with peanut butter. Somehow, it is so satisfying.

Breakfast/Lunch:
Whopper in a Bowl - HERE
Dawn's Jalapeno Chicken Salad - HERE
Light Breakfast Scramble - HERE

Dinner:
Taco Salad - HERE
Roasted Chicken with artichokes - Cut up seasoned chicken roasted at 450 degrees for 30 minutes.
Shrimp Marinara with fake pasta - HERE
Spicy Steak and Bell Pepper Quesadillas - HERE

Sunday, October 12, 2014

Wedding

Waiting for the Bride
 The wedding was so much fun. We reconnected with friends we had not seen in many years and made a few new ones. The ceremony itself was at the famous Pulgas Water Temple, which was built at the connector where the water from the snow melt comes down from the Sierra Mountains and into the reservoir to supply water to San Francisco. The setting was beautiful and I prepared as much as I could for the heat. Earlier in the morning, I had my makeup professionally applied for the very first time in my life. I suddenly had no wrinkles! It was rather amazing. We had a quick lunch with Wayne and Ian after they finished installing the 2x2s over the arbor before dressing for the wedding.

We worried about the pumpkin traffic so we gave ourselves plenty of time to get over the pass, had a cold iced tea from a Starbucks on the way and arrived first to the ceremony site! It was hot. I brought my oxygen and an umbrella. We sat in the very back row and Michael held the umbrella over me during the ceremony. But, it was hot and the flies were excited to have visitors. Tons of flies.

Mindy with Joel's father
But, the heat and the flies could not put a damper on the ceremony itself. The vows that Mindy and Joel exchanged were so personal and so very real. They clearly adored each other. All the good and all the bad. They push each other to be the best they can be. It was a very touching ceremony. At one point towards the end, something hit Michael. Something said reminded him so much of us. He leaned under the umbrella and kissed me. It was so lovely.

We made our way to the reception site down on the Bay. It was in a huge space I had been in years ago. It used to be part of a children's museum but was now being used for weddings and meetings after the new museum was built. It was on four levels connected by interior ramps. It took a while for me to recover my breath from the heat of the ceremony and a walk back up a hill to our car. I felt a bit overwhelmed at the sight of four levels! But, after a glass of cold lemonade and a seat while talking to new and old friends, I felt better. Recovered.

Finally, dinner was announced, we made our way to the top level and sat with Joel's uncle, Tim whom we had not seen in years. We met his wife and college-aged daughters for the first time and just had a ball with all of them. Tim used to be one of the kids who hung out in our garage many years before William was born. He had dropped out of college and was just doing some mechanical and body work. He saw a fancy car and asked someone what the guy did for a living to afford it? Doctor? Hmmmm. He applied to college then medical school then his focus became colon/rectal after his father died of colon cancer. He settled in a private practice in Southern California but kept his parent's house here in town. They use it when they visit the area. He told me last night that someone referred a two-month old baby who had kidney failure to him and mom's university was the expert in the baby's specific problem. Tim took the parents aside (who he had just met) and offered them the house here on the coast while their son was in the hospital. They stayed just over a month and the child is still alive. That is the type of guy Tim is. He also said that he was a really good surgeon because of being a good auto mechanic. Same tools. Small spaces. No problem.

Dinner. It was excellent Mexican food and an open bar the entire evening. And wine. And conversation. Both Michael and I are hoarse this morning. There was a photo booth with props then some dancing before the cutting of the cake. Both chocolate and lemon! Before leaving, we were invited to Joel's parent's house for dinner on Monday night. Tim and his wife will be there before they head home on Tuesday. I offered to bring an appetizer. I hope our voices recover before then!

Today, I have to cut the grass, phone Christien, make the food list for the week, order some drugs and get ready to return the jewels to the bank vault tomorrow. Life continues after such a wonderful day.

Saturday, October 11, 2014

Living with Pulmonary Fibrosis Patient Event

Wedding Day! Schedule: Shower, bank (to get the Rita Ring), professional makeup applied, dress, leave by 12:45, fight the pumpkin traffic, arrive at site at 1:30, wedding 2:30, drive to reception which begins at 4:30, enjoy. Going to be crazy. While all this is happening, Wayne will be screwing the 2x2s to the top of the arbor. Another check off my list.

We are so happy for Mindy and Joel. They are two wonderful people who found each other over five years ago, worked hard to nail down fantastic jobs and are now ready to begin the next step in life together. I have no doubt that they will be married for many decades. This will be a very joyous wedding.

Michael is still not at the top of his game so I doubt that he will having any cocktails today. I also think we will probably stay until the cake is cut then quietly head home.

We will see people we have not seen in years. We will have fun watching this sweet couple making this commitment to each other. We will enjoy being together for the day.

If you are in California, this will be an interesting event at UC Davis. The information is below:

email header
 
  
You've been hearing of all of the news and exciting progress happening in Pulmonary Fibrosis.  Come hear the details and updates directly from the experts at University of California, Davis (UC Davis) Medical Center Interstitial Lung Disease (ILD) program on Saturday, November 8th for a Living with Pulmonary Fibrosis Patient Event.  
RSVP now to hold you and your family's seats and your complimentary lunches.  To RSVP, just email Maya Juarez (maya.juarez@ucdmc.ucdavis.eduand let her know you are attending the UC Davis event. Please note how many will be in your party or list the names of your caregiver or family members attending with you, and also let her know whether you need additional oxygen during the event or have any dietary restrictions.
Please see details below.
Sincerely, 
Mishka Michon, CEO, Coalition for Pulmonary Fibrosis

Who?  UC Davis Medical Center ILD Program and the Coalition for Pulmonary Fibrosis
What?  Living with Pulmonary Fibrosis Patient Education Event: a free event for patients, caregivers and families
When?  Saturday, November 8th
Times:  8:30-9:30 a.m. Registration and complimentary light refreshments
Program:  
9:30 a.m. - 2:30 p.m. 
Where?  Location:  UC Davis School of Medicine, Education Building, 4610 X St, Sacramento, CA 95817 Classroom 1222
RSVP:  Maya Juarez at maya.juarez@ucdmc.ucdavis.edu - include your name and the names of your caregiver or family members who plan to attend with you or just the number in your party and let her know whether you will be needing additional oxygen during the event or have any dietary restrictions.  
*  Complimentary lunch will be provided
*  Oxygen refills will be available onsite.
This PF patient event is made possible through an education grant from Gilead. 
Directions to the event at the UC Davis School of Medicine
Parking:  Directions to the parking lot on UC Davis campushttp://www.ucdmc.ucdavis.edu/parking/downloads/UCDMC_Campus_Map.pdf  
(The Education Building is marked with a "J" on this map. Parking is in Lot 12, just south of this building).
Directions:
From the north (Sacramento International Airport, Redding)
1.        Take I-5 south to Business 80/Capital City Freeway east (Reno).
2.        Follow Business 80/Capital City Freeway east to Highway 50 (Placerville).
3.        Take the 34th Street exit and turn left onto 34th Street.
4.        Turn right onto T Street.
5.        Turn right onto Stockton Boulevard.
6.        The Sacramento campus will be on the left.
7.         Turn left onto X Street
8.         Turn right onto 45th
9.         Turn right into parking lot 12
10.         The Education Building will be on your left as you drive into the lot.
From the south (Stockton, Los Angeles)
1.        Follow Highway 99 or I-5 north to Business 80/Capital City Freeway east (Reno).
2.        Exit at T Street.
3.        Turn right onto T Street.
4.        Turn right onto Stockton Boulevard.
5.        The Sacramento campus will be on the left.
7.         Turn left onto X Street
8.         Turn right onto 45th
9.         Turn right into parking lot 12
10.         The Education Building will be on your left as you drive into the lot.
From the east (Placerville, Lake Tahoe)
1.        Take Highway 50 to the Stockton Boulevard Exit.
2.        Turn left onto Stockton Boulevard.
3.        The Sacramento campus will be on the left.
7.         Turn left onto X Street
8.         Turn right onto 45th
9.         Turn right into parking lot 12
10.         The Education Building will be on your left as you drive into the lot
From the west (Davis, San Francisco)
1.        Take Business 80/Capital City Freeway east (Reno) to Highway 50 (Placerville).
2.        Take the 34th Street exit and turn left onto 34th Street.
3.        Turn right onto T Street.
4.        Turn right onto Stockton Boulevard.
5.        The Sacramento campus will be on the left.
7.         Turn left onto X Street
8.         Turn right onto 45th
9.         Turn right into parking lot 12
10.         The Education Building will be on your left as you drive into the lot.


 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Friday, October 10, 2014

Sore Muscles

I thought I was doing well, not a lot of sore muscles from all the workouts this week, until I began to warm up for the rehab class yesterday. Ouch! It was mostly in my shoulders but it was a struggle to complete the entire workout. I found myself dozing off late in the afternoon and slept well all night.

This morning, I will drive over the pass to collect mom then work our way back to the coastside for our toenail appointment. As is our tradition, we will enjoy a lunch of fish tacos afterwards. We will also enjoy endless conversations together!

Friday night! Michael usually has a bit of his favorite Kentucky bourbon and we sit out in the garden talking about the week and the upcoming weekend. Still not feeling a hundred percent, he will probably not feel like a cocktail. I suspect that tonight will be quiet and both of us will be snoring early. Tomorrow is going to be a big day! Wedding day!

So, I will take my sore body out into the world and enjoy my day with mom. It is such a gift to still have an independent 86-year old mother who is also a lot of fun.

Thursday, October 9, 2014

Wedding Prep, Exercise and a Rehearsal

Facial, hair and eye brows? Done! The march to make me presentable at the formal wedding on Saturday is moving forward as planned. Toe nails are scheduled to be painted tomorrow then makeup professionally applied on Saturday morning. The weather forecast inched up a couple of more degrees and I fear it is going to be hot! Visions of sitting in the hot sun with my fancy makeup dripping down my face is a real possibility. My plan? I am bringing my oxygen with me. Heat makes me short of breath which makes me sweat. I am also bringing an umbrella and we will sit in the very back of the audience. Short of staying in the car for the entire ceremony, that is about all I can do. It could be ugly.

Yesterday's 90-minute yoga class was one of the best I have attended. My body moved well and I didn't need any supplemental oxygen. The studio was cooler than usual, which is maybe why I was breathing so well. Afterwards, the house was picked up for the housekeepers and I made tonight's dinner. Just trying to stay a step ahead! Finally, the strings only orchestra rehearsal was a challenge. We were in a small space with horrible lighting. We all looked sleep deprived and zombie-like. My string bass, on the other hand, loved the space. It was able to be heard above all the other instruments so I had to pull back a bit. It was rather fun to hear its deep resonance against the violins, which I usually don't hear well as they are across the large rehearsal space with all the brass and woodwinds between us during a normal rehearsal.

Michael is dragging. He still is not completely recovered from his cold. He is tired. Last night, I told him not to wait up for me and to just go to bed. I would get the bass back into the house. He was totally out when I got home. A few more nights like that and he should feel a bit better soon. Wedding hair cut for him tonight.

Pulmonary rehab class is this morning so I have been able to exercise everyday since Saturday. I feel so much better, looser, stronger, breathing better and even thinner!

Wednesday, October 8, 2014

Forcing Myself to Move

No one was more surprised that the Giants beat the Nationals (who beat us up during the season) and will face the Cardinals for the National League title. My family has been Cardinal fans since the 1920s and my brother is still a huge fan. My mom said she is sorry but since my dad was also a Cardinal fan, she will be cheering them on for the championship. I was the lone traitor when I fell in love with the Giants back in the 60s! It will be an interesting five games.

Keep moving the body goal continues. After a couple of weeks of taking it easy to recover from pneumonia, I began to challenge the old body again beginning last Saturday. The rehab class was yesterday but my numbers were not fabulous. They were okay, not great. Earlier, I had taken a walk along the ocean and felt every step. It was not easy but was lovingly cool and foggy though not wet. Good walking weather. Afterwards, I cut up the branches from the vine and began filling the garden recycling bin once again.

This morning, I am going to the yoga class overlooking the ocean to move the old body in a different direction! This week I am also trying to get the body ready for the fancy wedding on Saturday. After yoga, I am going to have my eyebrows waxed then I have a hair appointment in the afternoon followed by orchestra rehearsal tonight. Somewhere in there, I will pickup the house and make dinner. A busy day.

I so appreciate every day that I am upright and able to function. I know that there will be a time when I will suddenly crash and will need supplemental oxygen 24/7. It may be soon. Life will change. I hope I will adjust and try to keep moving. The process of lung transplants will begin. A whole new chapter will unfold. But for now, I am able to jump into my car and drive anywhere I need to go. I am able to get anywhere I need to be. I will continue to force myself to move my body every day.

Tuesday, October 7, 2014

Moving the Body

It began on the weekend, continued yesterday and will be in full tilt today. Moving. Working out. Sweating. The weekend included lots of yard work and tree removal and staining of wood. Yesterday, I did my entire routine at the other rehab and today will be my first day in a long time to see my rehab boys in the class. But before class, I am going to take a walk along the ocean early this morning.

By 2:00, I should be needing a nap!

My body is feeling better, looser, thinner and happier with all the movement. I am also sleeping so deeply I feel stupid when I awaken. And the dreams! Oh, the dreams.

The only thing that is worrisome is that I don't feel I am breathing well. It feels laboured. Michael said that the air was "heavy" yesterday and maybe that is why I was at 94-96 saturation rates while sitting. Should be higher.

I have been thinking a lot about my friend Marty who is post-transplant, had my disease and is not doing well. After receiving one lung just over a year ago, he is back on supplemental oxygen 24/7 and needs a wheelchair to get around. He was in good shape pre-transplant though underweight and the top end of the age limit. In my mind, once one received a transplant, their life carried on for a few years. A better quality of life. This along with the death of Susan from the ILD Support Group earlier this year has rather shaken my understanding and has given me a reality check about the entire transplant process. There really are no guarantees. It is a crap shoot. Health of the patient and quality of the new lungs are the unknowns once committed to a transplant.

But what is the other option? The new anti-fibrotic drugs for IPF will have to be approved and used for a few years before insurance will cover their tremendous costs for other ILDs. Too late for me. So I will be relieve to be qualified for transplants when that time comes. At least there is a chance that I could live a few more years. It suddenly feels like that time is growing closer and closer.

Monday, October 6, 2014

Wedding Next Weekend

Monday. What a great weekend staying home here on the coastside. The weather was so much cooler yesterday, we went into town for lunch, finished staining and protecting the 2x2s for the arbor, made dinner for tonight, ironed, watched the 49er game and Alaska: The Last Frontier. I also slept on and off all day. I just can't seem to get enough sleep right now.

It is count down week to the most anticipated wedding ever. A wonderful guy who was born on the same date as William, though a few years apart, is getting married next Saturday. Mindy and Joel. They are so happy and just so perfect for each other. We have been friends with Joel's dad for forty years. He married Lori and she wrapped us into their lives. We have not seen them too much in the last ten years so this will be a very fun event.

It is a formal affair. The ceremony will be at this beautiful site then the reception will be at a different site. Formal. Black dress. I found some jewelery mom had passed down to me years ago. She now has no memory of it. Rhinestones. Real pearls. It is clearly from the 1920s with matching drop earrings. I remember her telling me it was my step-grandmother's. I will also bring the Rita Ring back out of the bank vault. The weather will be in the 70s for the outdoor ceremony. Sounds just about perfect.

So, to get ready for this event, I have appointments this week for eye brow waxing, hair cut and colored, finger and toe nails cut and painted, a facial, hair removed from face and legs and I am even having my make up professionally applied on the morning of the wedding. It takes a lot to keep me looking so fresh and natural!!! HA!

Monday. Ah, Monday. The other rehab is calling to me. Afterwards, mom and I will hang out, have some lunch then she has an appointment with her dermatologist later in the afternoon. I won't get home until late this afternoon, which is why I cooked the Ancho Macho Chili for almost three hours yesterday. It is ready for tonight.

Sunday, October 5, 2014

Working Off Pounds

I happened to be awake in the early morning so I turned on the F1 race from Japan to see if it was over. It was red flagged. Apparently, one of the drivers hit a crane and now has a serious head injury. He is a young French driver for Ferrari. Just a kid. In recent years, it has become very rare to have serious injuries at this level of racing. It was a very solemn awards ceremony.

We stayed up late - I paced, went out to water the yard, played games on Facebook - to watch the Giants game, which went 18 innings. The National beat us up all year so it was shocking that we are 2-0 coming home for the next two games on Monday.

For the first time since being sick, I pushed my body yesterday. I filled one garden recycling container with garden waste from the front yard. I pulled old flowers, I trimmed everything that needed trimming, I raked, I turned dirt...I am so sore this morning!!! After doing all the yard work, Michael helped me take down the huge vine. My job was to cut it all into little pieces and placed into the other garden recycling container, which took a bit of time and energy. Did I mention all the spiders?

I swear I am three pounds lighter today.

Later, we are going to be staining and protecting the 2x2 pieces of redwood, which Wayne will screw into the top of the arbor later this week. Another job done.

The weather has changed overnight. There is a cooling, light fog this morning and the weather is expected to be twenty degrees cooler today. My breathing is so much better already. It feels great to be light and loose again.

Saturday, October 4, 2014

Out Into the World, At Last

Coffee. Formula 1 qualifying from Japan. A perfect Saturday morning. Lots of F1 gossip and a few shocking announcements in this "silly season" when the drivers are scrambling for next year's rides.

Michael's sister Anna and her newly retired husband Doug have just returned from their many weeks on a river cruise on the Danube from Budapest through Germany with stays before and afterwards. This is Anna's first big trip anywhere. First time out into the world as she had refused to go on other trips with her husband and son. I am so excited to hear what she thinks of the whole experience.

Also yesterday, Michael's mom flew to see his sister Debbie, her daughter Valarie and Val's son Josh in Knoxville, TN. It is her first time seeing Val and Josh in fifteen years. They were burning up Facebook with anticipation and excitement all day.

Mary flies through airports in wheelchairs and even had a long layover in Dallas where she spent her time having a few cocktails. I just had to laugh. She usually is in bed by 5PM and up around 3AM. I loved the thought that she was up and out into the world, flying on her own, hanging out in a cocktail lounge in Dallas and arriving in Knoxville around 10PM our time. She hasn't been awake that late in years!

After a week, Debbie and Mary will take a road trip to Decauter, IL to visit Jeannette, Mary's oldest sister. They have been working on their family tree together over the phone and have gathered quite a bit of fun information. Mary will stay with her for a week before being driven to St. Louis and a flight back to Orange County.

This trip will be so good for Mary. She tends to hide from the world, does not get dressed everyday, stays in her room and won't move her body. Because of that, she is having a hard time walking and has lots of pain. I have been trying to inspire her to take some drugs my mom takes for osteoarthritis pain. I have suggested that she take walks to the driveway next door and back then work her way down the block within a few months. Nothing. Sadly, it will be too late when she realizes that she can't get up off of a toilet seat or a chair or her bed. Pretty soon, she will need diapers and a caretaker. Maybe this trip will help to inspire her to adopt a more positive routine and participate in life.

Friday, October 3, 2014

Recipes for the Week

Steamy hot. We in the Bay Area are not used to these temperatures and most of us do not have air conditioning. At the meeting in the university hospital last night...no air conditioning. We usually get ours for free. It is called fog. It is expected to return by Tuesday, thank goodness. The roads in and out of town are going to be packed all weekend with pumpkin tourist and people looking for relief from the heat. Sunday, we will be twenty degrees cooler than the other side of the pass. I am staying here at home and working in the garden all weekend.

The pneumonia is gone but I am feeling lazy and sleeping so much. Just can't seem to get enough. Time to kick myself back into gear. Errands today include paying for the wood for the arbor, visiting the butcher, mom has an appointment with the eye doctor and finally a grocery run at Trader Joe's. I have lots of good recipes for next week. Good food. Foods that are healthful for those of us on prednisone. We don't process food correctly. Not our fault. Just the way it is. To stay lean and mean, we can only eat protein and non-starchy vegetables. That's it. Surprisingly, there is plenty to eat. Do a Google search for low carb/low fat recipes for other ideas. Adjust the recipes to low fat or non-fat foods such as cheese, cream cheese, sour cream and mayonnaise. Also, adjust the protein to 3-4 oz servings. So, eat well, exercise and stay away from anyone sneezing or coughing!

Breakfast/Lunch
Arugula Caramelized Onion and Goat Cheese - HERE
Smoked Salmon Deviled Eggs - HERE
Tuna - I just mix it with herbs, sugar free relish and low-fat mayonnaise.

Dinner
Chicken Pizza - HERE - I use turkey pepperoni and no sausage. Will serve it with a vegetable.
Ancho Macho Chili - HERE - Will serve it with cabbage salad.
Braised Balsamic Chicken with Escarole with Pine Nuts - HERE and HERE

Thursday, October 2, 2014

First Meeting This Afternoon

Well, I made it to two out of three appointments yesterday. Drive into the city? Fine. Gained less than a pound, which is not unexpected since I have not exercised in over a week. Dentist? Fine. Cleaned my teeth and no issues. Orchestra rehearsal? Not so much.

It occurred to me that I had not been out into the world for several days, still taking an antibiotic for pneumonia and maybe being out late with a lot of other people may not be too smart. I ran it by the nutritionist who just shook his head. Don't go. Rest. Next week is soon enough. I could hear my mother's voice in his giving me the same message.

I stayed home, which had a secondary treat: The Giants Wild Card game! I had forgotten! It was exciting for the first few innings then the Grand Slam. It was over after that. Onto the Nationals.

Today is going to be different. There is a major heat wave hitting the entire area including us on the coast! 80s! We are waaay too delicate for such heat! In October! But, I will leave this unusual beach weather to pick Michael up from work mid-afternoon, drive into the city for dinner and the first meeting of my university Patient Advisory Board.

In preparation for this meeting, I went back through my Medical History document I started when I first got sick. It lists the date, medical or legal appointments and what was discussed. It was so helpful during the lawsuits. Why I culled them was to complete a list of doctors and clinics I have seen since 2004, my first visit at the university hospital. I wanted to bring this list with me tonight.

I am so honored that we have been include in this group. I am also hopeful that we can offer wise suggestions.