Living Well with a Bad Diagnosis - Lung Disease

Wednesday, December 31, 2014

A Change of Plans

It was a rough night. We had gusts of winds that rattled the house and the power went out around 11PM. Hours later, I was still awake. Michael came home from work feeling awful so he wanted to sleep in his chair. After one of my Aprodine, he was able to breathe better and sleep a bit but the wind kept waking him all night, too.

He is feeling worse this morning and I fear he has a slight fever. I so hope this is a cold and not the flu but...I am beginning to suspect the flu. That is terrifying. I am now moving him back to the bedroom and he is banned from the rest of the house. I will use the other bathroom and will sleep on the living room couch for a few nights. I tease him that all his meals will be tossed into the bedroom from the door.

And forget all New Year's Eve plans! I am going to do a quick food run at the local stores for simple foods for the next few days. Eggs! Soup! Pasta!

To everyone else, please enjoy the first moments of 2015 with friends and family and the love of your live. I can only offer my best wishes for a healthy New Year ahead!

Tuesday, December 30, 2014

Better and Worse

One of us is better and the other is worse. This morning, I am fairly cough-free, feeling good and just made a nice pot of coffee. Michael, on the other hand, has been awake most of the night, coughing, sniffling, and frankly, just miserable. He is not good at being sick. He has no patience for it and is a bad patient. Not a happy camper.

The housekeepers are coming today instead of Thursday as I have a hair appointment and the timing was perfect. I think Michael is not going into work, I will be in town getting my hair done so I don't know where he will be while they are cleaning the house.

It should be an interesting day!

But this morning, I will pick up the house, phone both rehab boys, call Max's to arrange Sherman's 90th birthday party in two weeks, phone his daughters to get their permission before booking it, make the shopping list for tomorrow and maybe even hit Safeway. It is windy and very cold here. Icy.

While William was here, we talked about moving to the Seattle area to be closer to him. I know we can't move mom as she would not do well in a new environment and new doctors so the move would be, hopefully, many years away. The University of Washington has a good lung transplant program so we would buy a place close to them. It was interesting to look at real estate online. Something to think about.

Monday, December 29, 2014

Coughing into the New Year

Holiday health report: Michael has a full-blown cold that blossomed yesterday. Lots of blowing and coughing. I have been having lots of GERD, highly unusual. It is so weird to wake up in the morning and spend a few hours burping with no food in the old system. It felt like heartburn and was constant the past couple of days. Yesterday, I was so sick of food that I ate very little all day and awakened this morning with no symptoms. Hopefully, it is gone but I will mention it to the doctors during the next visits. I also have developed a cough that, if it continues, will need to be addressed.

William is healthy.

Speaking of William, he is flying back to his home this afternoon. Our final day together will include meeting Michael at his work then going to a pit BBQ place nearby for lunch together. Afterwards, we will hang out with my mom for over an hour before heading to the airport. Then, life returns to its normal routine. It has been a very happy, fun holiday. The big Christmas day celebration was a success and worth all the work. Almost all the wonderfully bad food is out of the house and our food routines are back in place.

Michael received the official letter from the DMV that he was approved to drive but they required another review in six months. He was jubilant. A late Christmas present. He needs to continue to eat properly, every 3-4 hours, to maintain his blood sugar levels.

His cell phone is still lost. It just goes to voicemail now. I know it is in a customer's car, hidden under a seat and hopefully, will be discovered soon. We are going to wait a few more days before buying a new phone for me and handing mine over to him.

I am looking forward to 2015. The focus will be exercise and proper eating for me. It's my job.

Sunday, December 28, 2014

Looking Back

I am becoming sick of food. Not my normal food but food that is just hanging around like candy. Lots of cookies and homemade breads and candy. The trifecta of things I should never eat. It has been a challenge! Last night, the trend continued with a late dinner in the city with British Don, William and the owner of our favorite French restaurant. I was able to control what I ate, except for several spoons of the four desserts on the table. One spoonful for each dessert.

We climbed into bed at midnight and I was able to sleep until 7AM. Today? I have no idea. We will see what unfolds.

The New Year. Last year at this time, I wanted to lose weight. By May, I had lost 23 pounds and we went on a wonderful 7,000 mile road trip. The weight has stayed off and recently, I have a lost a bit more. I can ignore all the weight loss commercials on TV! This year? I haven't decided on a resolution yet.

2014 was a good year except for Michael's seizure. That was a bit too scary. My health was relatively stable, I had the liver biopsy which turned out just fine, there were a couple of pneumonia issues but all in all, a good year.

2015? Here we go!

Saturday, December 27, 2014


I am past exhausted but I did get eleven hours of sleep last night. Christmas was a blast. Everyone had a wonderful time, the food was fantastic and the cleanup was a snap. Michael's phone interview on Christmas Eve went well but he learned that he could have been driving all this time and the interview was to determine if his license should be suspended. Weird. Only in California would they allow someone who had a seizure to drive for two months before possibly suspending their license. Rather scary!

We are going into the city for a 9PM dinner at our favorite French restaurant with British Don tonight. Today, we will probably swing by to see a few friends while William is in town. And crab. I think some fresh crab is in our future.

It has been marvelous just being together. I guess that is the magic of the holiday season. Time to slow down and just to enjoy each other.

My sister, William and Shelley's boyfriend, Russ
Michael in his new robe!

My sister, William and British Don

Thursday, December 25, 2014

Christmas 2014

Merry Christmas! 

We made it alive and well! What a year this has been.

My deepest wishes for a healthy, happy New Year. May 2015 be a good year for all of us.

Enjoy your family and friends today as they are really what makes life worth living.

My love to each of you!

Wednesday, December 24, 2014


Merry Christmas Eve.

Lots of drama here.

It is only 5:30AM and I have been working in the kitchen since 3:30AM. The brisket is in the oven for another three hours, the crab mold is finished and now onto the liver pate with mushrooms. I still have to make applesauce, boil the small red potatoes as a vehicle for the caviar, bake the sugared bacon for the melon salad, bake the cheesecake, make deviled eggs for Christmas breakfast then I am finished until tomorrow.

Lots of drama here.

Michael lost his cell phone yesterday and the DMV will be phoning it for his interview to reinstate his license today at 10:15. He thinks he may have lost it at the deli or in someones car. I sent a FAX to the interviewer's number asking to have the interview changed to our home phone. We'll see if he/she actually gets the FAX! I have a feeling this is all going to fall apart today. If we make calls this morning and find the phone, I will have to stop everything and drive him over the pass then home again to be here for the maybe home phone interview. Oh, and I need a shower and to vacuum the bedrooms and fight the traffic at the airport to pick William up this afternoon.

Lots of drama here.

We have two open house parties tonight. I got about three hours of sleep worrying about everything so I don't know if I will make either of them. William and Michael will go as my representatives! Lack of sleep seems to be the trigger that makes me sick so I need to sleep sometime today and hop into bed early tonight.

I promise photos soon. The house looks so festive, I was able to cut the lawns and clean up the gardens yesterday. Everything is ready. Did I mention another storm is blowing through this afternoon? There goes the clean windows!

Tuesday, December 23, 2014

Preparations for Christmas Day

I am sneezing a lot. YIKES! I took Aprodine last night and began a new run of Coldcalm this morning. Two little pills underneath the tongue every 15 minutes for an hour. Then, every hour for a while. I hope to stop whatever it is in it's tracks.

Back to Safeway this morning as I forgot crackers and tomatoes. My plan is to throw some clothes on and run into town at 6AM before the huge crowds.

Yesterday, mom and I had a Christmas lunch at a really nice restaurant. We felt like adults! Afterwards, we did the final Trader Joe's run, I bought the Duraflame Stax (no odor) on the way home, washed the windows and made five pounds of sugar-glazed walnuts. The neighbors bags are all filled and labeled.

I need to run over the pass to buy 3-quarts of the Russian Cabbage Soup to serve Christmas. The grass is just too wet to cut so I am going to trim the edges and blow all the messiness from the month-long storms into the recycle container.

Michael has his phone interview with the DMV tomorrow. Fingers crossed. He really needs his driver's license reinstated after his seizure last month. All the doctors have signed off so it should be approved.

And finally, I need to make five more pounds of sugar glazed walnuts as Christmas gifts for mom, William and my niece Shelley. We are going to two open houses on Christmas Eve so I am bringing a pound to each of those events.

That's it for today. I hope to take a nap later but I am so hyper, I am not sure that is going to happen.

Monday, December 22, 2014

Final Christmas Shopping

Sunday, I never sat for a moment, from dawn until night. So much was done. There is so much more to be done.  The staff filling the shelves and I were the only ones at Safeway at 7AM, Michael and I went over the pass to the butcher's and waited just five minutes for the fancy liquor store to open for more gift and the caviar before heading back over the hill. Because we were out so early, we had no traffic all morning. It was lovely. We were home by noon.

The table is now completely set, gifts are all wrapped, some nuts were made yesterday, we made then froze two dozen latkes for Christmas dinner (that was a lot of work!!) and I will pick up the Duraflame Stax from the Ace Hardware store in town today. That will be the last time I will need to be in a store before Christmas!

Also today, I am going to workout at the other rehab then hang with mom before we have a nice lunch together. Afterwards, Trader Joe's will be the last food run before Christmas. I love having everything in the house.

Michael is joining friends for their annual Christmas dinner this evening and his twin will drive him home so I don't have to be out so late. I think I will use that time to continue to make some of the eleven pounds of sugar-glazed walnuts for the seven neighbors and four other as gifts on Christmas. My mom loves them! Sometime in the afternoon, I am going to wash the windows. I hope. Maybe. We'll see.

Sunday, December 21, 2014

Lists of Lists

I have to keep reminding myself that the goal this Christmas is to celebrate the holiday with the family but not to get sick. I have to remember to eat well, to exercise and to sleep! Ah, it is that last one. My brain is so full of lists and what I need to get done each day that it has a hard time settling down each night. I awaken suddenly at 1:30 or 3:30 each morning almost in a panic, then I lay in bed thinking, thinking, thinking. I am beginning to drag.

It was crazy yesterday. I drove Michael over the pass; worked out; went in search of Duraflame Stax (odorless) at Home Depot, Target, Walgreens, CVS then ran to the bank before meeting Michael at 11:30. We fought freeway traffic back north to buy William and British Don some hoodies at the famous custom car speed shop, grabbed some lunch, I dropped Michael back to the shop and was home by 2:00. Then the work began.

After doing the laundry, I ironed a week of Michael's dress/work shirts and my grandmother's large linen tablecloth for the dining room table. I then took some Limoges, Christmas and my great-aunt's china dinnerware and set the table for Christmas. The nine candles as the centerpiece is a nod/homage to a menorah and our love of Jewish food being served this Christmas. Today, I will add the silverware and glasses.

This morning, by 6AM, I will be at Safeway to buy everything I need to make the latkas today as well as all the other food on the list for Christmas. Tomorrow I will buy the remaining food at Trader Joe's. Hopefully, I have not forgotten something so I won't have to fight any crowds later in the week. After I get home and put it all away, Michael and I are going to the butcher's, the fancy liquor store miles away and maybe even buying the caviar today.

After we get home this afternoon, I will wash all the windows to erase all the raindrops and finish up the table.

Did I mention while waiting to meet my former student for breakfast last Friday, I went by a CVS next to the restaurant in search of the Duraflame logs when I bumped into the lottery machine? I NEVER play the lottery nor scratchers. I stood for a bit, chose one and scratched it off in the car. Amazingly, I won $100.00, which is going to pay the bill at the butcher's and some of the groceries today! What a nice Christmas present!

Saturday, December 20, 2014

Final Weekend

Ready, set, go! The beginning of the final weekend to prepare for Christmas has begun! This morning, I am driving Michael to his shop to paint a car, will pick him up for lunch, we will head to a custom auto speed shop for cool hoodies for William and British Don and a bit of lunch before dropping him back off at the shop. Someone will drive him back over the pass later today.

In the meantime, I will workout at the other rehab and try to find Duraflame Stax for the fireplace (no odor), swing by the bank and CVS before driving back over the pass. While I am home today, I plan to iron all the linens and set the table for Christmas. Since we are serving Jewish food for Christmas, someone suggested that we have nine candles as the centerpiece with a sprinkling of chocolate gold coins.

I had a fantastic morning yesterday. A dear friend who was a former students at the school where I got sick met me for breakfast. It was joyful to sit across the table from him as he talked with passion about his second year of a PhD program at an Ivy League university. Inspiring. I was so touched that he would take the time to see me, as it is so limited.

We had to cut our visit short as mom needed the shot in her eye again. So, off we went to one campus of her university hospital for blood tests then down miles to the eye campus. While there, we shared our special Christmas breakfast with a staff member who squealed with delight! By the time we left, most of the staff was going to make it on Christmas. Whoever thought this up needs to win an award. Here is the recipe: Buy the best cinnamon rolls in the tube at the market. Cook eight piece of bacon but do not overcook them. Open the tube then unroll each cinnamon roll, lay the piece of bacon on the inside of each roll and roll them up. Cook as directed on the tube. Sweet, salty and delicious! Bacon Stuffed Cinnamon Rolls.

On the way home, there was a major accident on the freeway so all the streets were clogged. It took forever to get back to her house then I had to head over the pass. It was a long day!

Friday, December 19, 2014

Moving through the Holiday

One of my rehab boys, Dick, is much better as of yesterday afternoon. He sounded chipper and so much stronger than when I spoke with him on Tuesday. On the mend. Thank goodness!

Yesterday was the last pulmonary rehab class until after Christmas. All my baklava and sugar-glazed walnut deliveries were made. Done. Now the final countdown to Christmas happens. We still need to buy some presents and smokeless fake wood for the fireplace and the food. Ah, the food. Somewhere, I will also need to find the time to wash the windows and clean up the yards, too.

This has been a very difficult year, emotionally. We have lost a dozen people in our lives, two of which were members of my ILD support group, several were parents of friends and others were contemporaries. Last night, we learned that our dear friend Wayne just learned that his mom has cancer. She is not expected to live very long and hospice is involved. They, of course, are reeling.

More rain today as I meet with a dear friend and former student at the school where I got sick. It will be a quick breakfast before I take mom for her monthly shot in her eye to fight Macular Degeneration. I am so looking forward to hearing how his PhD program at Harvard is going. He is in his second year. Mom's appointment is late afternoon and, with the rain and Friday night traffic, it will be a struggle to get home. A long day ahead.

Thursday, December 18, 2014


It felt great to just be home yesterday. I was on my feet in the kitchen for several hours making two batches of baklava and five pounds of sugar-glazed walnuts. The baklava is being sent into Michael's work today, I shipped a small batch to my brother yesterday and even a few pieces are being given to mom's physical therapist this morning. And several pieces have made their way to Michael. It is his very favorite of everything I make.

I made the nuts for the housekeepers and my three rehab RNs and physical therapists. They are also all being given gift cards. I am so grateful to each of them.

The chandelier in the dining room is now sparkling and I keep reviewing the list of things to do before William arrives on the 24th. Since he has been on the road since early September, he is just not in the mood for Christmas. We hope to give him a bit of Christmas spirit by reminding him that we all have so much to be grateful for this year. I just glanced over to see Michael sipping a cup of coffee. In November, he may have had a major brain injury yet here he is today. Normal. Yesterday, I wrote out $5,000.00 worth checks to pay our deductible for the event. Merry Christmas! That hurt! But, it was all worth it to know that he had no brain injuries.

This morning, I will head out into the world of standing water everywhere to shop for my niece before the final rehab class before Christmas. One of my rehab boys phoned on Tuesday to tell me his lungs crashed. Dick was now on supplemental oxygen 24/7 and felt exhausted and overwhelmed. He was also the caretaker for his wife and he sounded so weak and breathless. After a CT scan and blood tests, there was no diagnosis of the cause of the downturn. With the recent death of Marty and losing Susan earlier this year, I just don't think I can take another dear friend leaving this earth. I am hoping that the prednisone and antibiotics will work their magic to turn his situation around.

Wednesday, December 17, 2014

A Change in Plans

Monday morning, I was watching mom workout at her final physical therapy appointment when my phone dinged. A message. Taking a quick peek, I was stunned. There was no way I was going to share the information with her during rehab as I know it would take her concentration away from her work. My mind went into overdrive. I texted a quick note to Michael.

For Christmas every year, we make food from different countries and this year, Lenny and his mom from Samoa were coming to feed us traditional food, dance traditional dances and sing to us. A really unique Christmas. It also was going to be very easy for me. No work. The message on Monday? Lenny's mom in Samoa was in heart failure and he was flying home. I sent him my very best wishes for her recovery and told him not to worry about us.

We will be having nine people here for Christmas lunch, appetizers, dinner and breakfast on the 26th. Time to kick my creative juices into overdrive. Mom was shocked when I told her that Lenny and his mom were not coming, we ran to her university hospital to return the portable device for her pacemaker while trying to find a theme for the food. Over lunch of a bowl of the delicious Russian Cabbage Soup at Max's, which is a restaurant featuring NYC Jewish Deli foods, it hit me!!! What not serve Jewish food as our Christmas food theme? We all LOVE it.

Michael phoned later that day. I presented the idea to him. He LOVED my suggested menu. I phoned Lee and Jeff and they LOVED the menu. All in all, it worked out. Now the work! Here is the menu:

Breakfast: cinnamon rolls, deviled eggs

Lunch: mini-bagels, cream cheese, tomatoes, red onion, capers with a choice of roast beef, turkey or smoked salmon. Also, a melon salad.

Appetizers: herring, tiny new potatoes with caviar, pate with tiny gherkins, crab mold, hummus with red and green peppers with pita, kosher pickles

Dinner: Brisket, latkas, homemade applesauce and sour cream

Dessert:  Cheesecake and Jewish cookies - macaroons, palmiers, rugelash

What is so great is that the melon salad and the cinnamon rolls are the only things that need to be made on Christmas Day. So much is actually purchased and presented. Simple. The brisket is better made the day before, the latkas will be made this weekend and frozen, the tiny potatoes will be boiled the day before as will the applesauce and cheesecake. So easy.

I met Michael at work about an hour early yesterday and we wove our way to the mall for an evening of Christmas shopping. We are mostly finished, except for a few gift cards. On the ride home, our road through the pass was CLOSED due to flooding. We sat at the top of the pass for over 30-minutes until it opened. We were lucky it wasn't longer and we had enough gas! Did I mention it was still pouring?

Tuesday, December 16, 2014

Webcast Tomorrow

It has been an interesting year for those of us with a fibrotic lung disease. The FDAs approval of two drugs to treat IPF is a first. There was no treatment for people with IPF, other than transplants. The drugs have shown to reduce the steady and fast march of the disease by thirty-percent. Hopefully, insurance companies will soon allow these drugs to be used off label, for those of us with other ILDs.

There is a free webcast tomorrow. Follow the information below.

email header
The last few weeks have been such an exciting time for the idiopathic pulmonary fibrosis community. To inform you about a treatment option and the patient support program associated with it, we are sharing an important learning opportunity with you.
You are invited to attend a free webcast on December 17, 2014 at 1:00 PM ET in which a representative from Boehringer Ingelheim will introduce you to their IPF patient support program -- a series of free services, such as a 24-hour nursing hotline, locations of local support groups and financial assistance, which are provided by Boehringer Ingelheim.
There is too much information on Boehringer Ingelheim’s patient support program to include in this invitation, so please join us on December 17, 2014 at 1:00 PM ET to learn more!
Here are the details:
Date: December 17, 2014
Time: 1:00 PM ET
Dial-in: 1-877-870-4263

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

Monday, December 15, 2014

A Bit at a Time Towards Christmas

The rains are back for the rest of the week only this time, it is also cold out there! We delicate Californians are just not used to coats. Mom has her final physical rehab today then we have to make a quick run down to her heart clinic to return her pacemaker remote device from the study and pick up the standard one now that the study is over.

I was a slug yesterday. Moving about the same pace as a slug, I went into the world to buy some Peet's coffee grounds for the week, some food containers to fill with Sugar-Glazed Walnuts as gifts and I made dinner. These events happened between naps! Around 7PM, I threw in the towel and went to bed. This morning, I am feeling much better and hope to make it through the day without a nap!

Christmas is coming whether I am ready or not! Working on the schedule is the primary goal today. We have very few presents under the tree and so much to buy. Michael and I will meet after his work this week, have some dinner then shop until the stores close, we run out of money or we fall from exhaustion.

I have a bit of a cough and hope that it goes away rather than grows. Since Christmas will be celebrated here, I really don't want to be sick for the holiday. The goal is to do a little something everyday whether it be cleaning the dining room chandelier or the grout in the bathroom or wrapping presents. I will have the last rehab class and housekeepers on Thursday so the presents for both groups of people need to be bought and/or made along with cards and money. That is today's goal.

Sunday, December 14, 2014

Way Too Much Fun

It was so not planned.

We picked Mark up from his house, drove into the city to meet five other people from Michael work at the restaurant in the far side of the city. A miracle happened, we found parking right in front of the place. It turned out that the reservations were for 9:00 and 8:30PM. I was cold, there was no room to hang out in the place, so we down the street to a local lounge. After a chat with the guy next to me, we learned we went to the same high school (a few years apart) and he remembered the two teacher with whom I workout at the other rehab. Small world.

Back to the restaurant.

Everyone finally arrived. We had a marvelous dinner under a canvas roof in the back courtyard. It was festive and warm and just a nice venue but it was packed. The place was hopping! Michael and I split a tiny crab salad, he had sweetbreads and I had the hanger steak with steamed green beans and zucchini. Everything was perfectly cooked. Delicious.

Service...was slow. We didn't get out of there until after 11:00 and decided to go to one of the hip places for just one drink before heading home (nothing for me, of course!). Well, one thing led to another. I loved watching all the action and I think we were the oldest people in the place! Clothing! Hair! People who had too much to drink! All of it was eye opening for this girl from the very rural suburbs!

We had planned to be home by midnight. Mark has his children all day today and Michael was going to paint a friend's car at 9AM this morning. We all were having a bit too much fun! Suddenly, it was 1AM then 2AM before we walked the couple of blocks to the car. We drove the empty roads home, dropped Mark off at his house and we finally crawled into bed at 3:30AM. That was a record.

Today? I am making some baklava to give to mom's physical therapist tomorrow and the rest of the pan will be sent into Michael's work to share as a holiday treat.  That is all that is planned. And a nap. Maybe a few naps.

Saturday, December 13, 2014

Unexpected Evening

So we were sitting in the garage after dinner last evening, Michael was having a small glass of bourbon with an ice cube while organizing some small parts to finish up his project and I was making our Christmas gift list and menus. Suddenly, cars began arriving to Joe and Leslie's house. Michael offered some people the option to park in our driveway to stay off the street - a no-no here in the complex. No sidewalks. No parking allowed on the small streets. Leslie spotted us, came over and invited us to their party.

After a bit, we threw on clean clothing and brought along a bottle of Irish whiskey that we have had a long while. While visiting Joe's relatives in Ireland a few years ago, Leslie took an Irish fiddling camp. A week-long study for beginning Irish fiddlers. Now, if you take a classical musician who is used to sheet music in front of them and remove all music, then tell them the cords, progressions and to just play, that is quite a challenge. Leslie has gone back to the camp each year and has put together a local Irish fiddling group. They were really good last night.

We hung out for a couple of hours, the whiskey was a success and the music was fantastic. What an unexpected evening.

I am driving Michael over the pass this morning, working out at the other rehab, buying eight poinsettias for the house then taking a nap. We are meeting several of his work friends at a new restaurant deep in the Marina district of the city. It is going to be a long drive but it should be a fun, late night ahead. I predict a quiet Sunday!!

Friday, December 12, 2014

Internet Access is Back

I just now got my Internet access back after the huge storm on Thursday. There is another front going through right now but nothing like yesterday. Four inches of rain, 56mph winds but no damage, thankfully.

My glaucoma doctor was thrilled that my pressure numbers were finally in the normal range (caused by prednisone). He had been considering surgery. Dodged another bullet! For this appointment, I made it over the pass in the worst of the storm on Thursday morning but thankfully, most people stayed home as all the schools in the Bay Area were closed. Immediately afterwards, I scurried back home and listened to the rain on the roof the rest of the day. We had some standing water in the back yard but no flooding.

Mom and I spent today together, everywhere we went were huge crowds of people and cars. Guess everyone who stayed home yesterday wanted to get out and about today. Madness. All our plans changed but we still managed to have lots of fun.

I am home. It is warm and quiet and the Christmas lights are on. Tonight, we are going to sit down and make the Christmas list of all the people and things we need to buy then another list of the food for Christmas lunch, appetizers and breakfast on the 26th. We love doing this. Mom gives each of us $250.00 to buy what we wish, we wrap everything up and open it front of her. She is always delighted. We all try to buy as many things as we can with the money. Sales galore!

Michael and I will begin the negotiations tonight. We will go in with each other for presents that we both can use. Some money goes for personal wants like workout clothing or that sort of thing. We love this process and laugh a lot.

No rain for the weekend but it all begins again on Monday. As we have been in a major drought, I love it but wish it would be a constant light scattering everyday instead of these huge storms. Oh well, beggars...

Thursday, December 11, 2014


A quick blog as I am not too sure if the power will stay on. We are at the beginning of a major storm. As we are on the coast, it is REALLY major with winds up to 70mph. And I have to go over the pass. Michael suggested that I pack a couple of days of medications with me, just in case we can't get back to the coast for a few days. It is that bad.

I did stay home yesterday to cut the grass and prepare for this storm by buying staples at Safeway. The parking lot was full at 11AM as others had the same plan. Water, batteries, simple food to have on hand. Orchestra rehearsal last night was fun. Gerry was there, we chatted through the evening and played really well.

Off to the eye doctor but I think I might just head home afterwards. Wish us luck!

Wednesday, December 10, 2014


Way back in 2008, my university hospital began one of the first ever ILD Support Groups opened to patient and families from other hospitals from the Bay Area and beyond. Some people would travel well over 100 miles to attend these meetings, which would feature a bit of conversation then a speaker about a topic important to those of us with an ILD. It was an education-based support group.

During that first meeting, we went around the room and introduced ourselves and our ILD. From the back of the room, I heard, "Marty and I have Hypersensitivity Pneumonitis." I was riveted as I had never met someone with my specific ILD. During the early days of dealing with the disease, I had so wished I could just meet someone with my disease or talk with someone further down the road to give me help and advice. Marty and I made eye contact. After the meeting, we made our way to each other, stood in the hallway after everyone else left and talked for over an hour. I was the first person he had ever met with his ILD. We had lots of questions for each other regarding medications, diagnosis, oxygen needs, Worker's Comp issues, possible antigen and so much more.

We became friends.

Marty was a small man, a lot older than I thought and was in good shape. He was always surprised that Dr. K. banned me from flying because of being immunosuppressed as we were taking the same medications yet he was still flying. In the summer of 2012, he flew once again to his beloved Hawaii. While there, his lungs crashed. By the time he arrived home, he needed supplemental oxygen 24/7 for the first time and he was miserable. After dealing with this for over a year, he told me that he just hated being tethered to oxygen and was going to be interviewed for a single lung transplant at my mom's university hospital. They took one look at him, said he didn't appear to be his age of 70-years old and began the testing for the transplant.

It was during this time that he remarked to me that he so wished he had never flown to Hawaii.

I think he was finally transplanted in October of 2013, we met for coffee last December and he looked so tiny. He had lost twenty pounds during the process. We had exchanged emails and he came to a couple of ILD meetings since our coffee. I wanted to be a support to him but not a pest. This past September, we once again exchanged emails and I was very concerned to learned that he had been hospitalized during most of the summer, lost another twenty pounds, was home and back on supplemental oxygen 24/7. Recently, he had lost yet another twenty pounds and was wheelchair bound. Though he tried to sound upbeat, I knew he HATED being in that condition. I comment to Michael that there was no way he was going to be able to survive that amount of weight loss while trying to adjust to a new lung. Sadly, I was right.

Marty died in late October. He death has hit me very hard. I will deeply miss him.

As I told this story and looked around the room at the ILD Support Group meeting yesterday, I realized once again that there were only a very small handful of us who were also at that first meeting. All the others were either transplanted or dead. It makes me recommit to my exercise program and continue to eat well. I think that is what has kept me alive well past my prognosis date.

Tuesday, December 9, 2014

Shopping and a Chat with Santa

It was a shopping day yesterday. After mom's rehab, we went to the Stanford Shopping Center (sigh) to have lunch at Max's (delicious, as always) then a search for a Hawaiian shirt for Christmas day (zilch) then a shopping run through Macy's. The best Macy's. Mom found a pair of wool tweed trousers that fit (!!!) and a white blouse to wear under sweaters. She was thrilled. I found three pairs of cords and a sweater. The only problem? I bought two of the pants in petite, which means they are really a size 6! Well, I have never been a size 6 but I crawled into them last night, got them buttoned and zipped up but, alas, they were just too tight. I couldn't believe I even got into them. The one pair of size 8 was perfect. So, on my way into the city today, I am stopping by a different Macy's to exchange the cords. All this was purchased on a gift card from mom for my birthday last month. Big sales!

On our way home, we went by DSW and found a fantastic pair of shoes to wear with the new cords for the winter. These were also purchased on another birthday gift card from Anna and Doug! I spent a lot of money but it didn't cost me a dime! What a day!

While at Stanford, we went to see Santa. He was amazing. His weight, white long hair and full beard were real. His wife made his adorable outfit and he really was Santa. There was a lull, he saw us, waved then came out for a chat. He helps the parents get good photos of their children then, with each and every child no matter the length of the line, he sits and has a talk. That is the most fun to watch. These children just pour their hearts out to him and hug him and just love him. He told us yesterday that sometimes it is hard. He asked one child what he wanted for Christmas, "I just want my parents to stop fighting." Santa eyes welled up with tears while he was telling us this story. He hugged mom and later she remarked that she felt that the hug was from Santa. The real Santa. What a remarkable man.

Today, I am going to the ILD Support Group Meeting. There is going to be a cookie exchange for the holidays and no guest speaker is expected. It will be a meeting of just us. Sometimes, those can be the most interesting. It will be nice to see everyone. I am mentally preparing myself for another ride into the city. Here we go.

Monday, December 8, 2014

Christmas Has Arrived

Christmas has arrived at our house. The outside lights are hung and the two Christmas trees are trimmed. It only took several hours yesterday! While all the holiday work was happening, there was a pot of lamb stew cooking slowly on the back burner for dinner. It was the reward for all of our work and it was delicious. We were both exhausted and I was in bed by 7:30.

We have been trying to update our home as it suddenly appeared like old people lived here. Earlier, we had updated the bedding in the guest rooms and added bright green, deep eggplant and scarlet pillows to the living room. Last week, Mom and I found Christmas bulbs in the same rich colors and they look fresh and updated on the Christmas tree in the living room near the new pillows.

Yesterday was Winnie's 8th birthday. We phoned and learned she had the entire day planned: decorating large gingerbread men, Christmas tree shopping, dinner at the dive down the coast for artichoke soup, French bread and pie. She also told us that they went out for French toast for breakfast and she just mentioned that it was her birthday. The entire staff and patrons sang Happy Birthday to her and there was a candle served with her pancakes. She was utterly delighted. After we hung up, Michael commented that she sounded so old. So grown-up. We adore that kid.

Huge storms are arriving Thursday through Friday. Big, blowing, largest storms in five or six years. We are so very happy as we have been in a three year drought. Expect to see this storm on the National news.

More in the good news category, I need to buy some new cords today. Since losing a few pounds recently, the size 10s from last year are huge. Well, they are cords and I think they loose their structure. I can slip them off with button and zipper intact. I'm going to buy some really tight size 8s and wear them around the house until they give a bit. I have lots of summer shorts but really nothing for the winter. They will be my first gifts from mom for Christmas. She gives each of us $250.00 to buy presents for ourselves, we wrap them up then open them in front of her on Christmas. She loves to be surprised!

I am feeling so much better. The problem of having no energy, I believe, was solved. The thyroid medication was not able to work properly because I was taking another medication with it. Duh. It is nice to feel close to normal again. My breathing is good. I did use my supplemental oxygen to decorate the trees and I think it helped. We are still trying to stay away from groups of people and avoiding anyone with sniffles or a cough. So far, so good.

Stay well, dear Reader!

Sunday, December 7, 2014

Suggestions of What To Do If ILD Not Being Treated Properly

What can one do when an ILD is not being treated properly? They are still a rather rare group of diseases, compared to other lung diseases. If a patient is far away from a major city which has an ILD Clinic, how can this chronic disease be treated? Or if the disease is not being treated well? The patient is ignored. This is a major problem with one of my readers who has become a friend. Her husband is just not getting the proper treatment from a major facility, who should be ashamed of themselves. 

Sadly, most of us to not have an advocate as strong as my friend. She is tough. She has to be. They worked with a local pulmonologist, then another then to a major university medical center, then another medical center and more pulmonologists. They have settled on a local one but...settled is the proper way to explain it.

After so many issues and problems, they have now committed to flying across the country once a year to meet with National Jewish Hospital in Denver, who has the highest respected pulmonary program in the country. They are amazing. They will help them drive his care with advice and proper testing. My friend and her husband feel heard there. 

So, what do you do if you are not getting the proper care? Keep searching for a pulmonologist who has a speciality in your specific lung disease. If you ask for but do not get tested for GERD or sleep apnea or a prescription for pulmonary rehab, change your doctor. Check into the pulmonary programs in the larger medical centers in the closest big city. 

These groups of diseases are really chronic diseases. We need longtime care. We need pulmonary function tests and 6-minute walk tests and pulmonary hypertension tests and CT scans and medications and tests on our livers and tests for GERD and tests for oxygen needs and so many other issues. We need a doctor who understands how to guide us through this maze. We need to be a team together. I am so lucky to have Dr. K. on my side. I know that, had she not stepped in, I would not be here. She drove my care from the moment she met me because she saw that I was being ignored. It was all so new to me that I didn't even know that I was not being treated properly. I didn't have an advocate like my friend.  

Saturday, December 6, 2014

Driving Saturday

I may have figured out why I have had no energy lately. For years, the first thing I do when I wake up is to take my thyroid medication at least an hour before any food or other medications. When my knee was bothering me, I took one of Michael's Osteo Bi-Flex pills along with the thyroid medication. I think that was my big mistake. I don't think the thyroid medication was able to work its magic properly. We will see in a few days if my energy levels return.

Today, I return to my chauffeur duties. Michael will need to be ferried over the pass. Our little town is not only known for its pumpkins but we also have fields of Christmas trees for families to chop down and haul home. From October through December the traffic can be a bit difficult. This weekend, it is expected to be extra crazy. We are always so happy to welcome January on the coastside. No traffic!

Since I am over the hill anyway this morning, I am going to work out at the other rehab, then swing by the butcher's and Trader Joe's. After a few hours back home, I will head over the pass again to pick-up Michael. I have enjoyed being his weekend chauffeur as it is additional time together, so I will miss that part of my life when he gets his driver's license reinstated.

Friday, December 5, 2014

In the Car All Day Yesterday

I can't wait until Michael gets his license back as I am done driving. Yesterday was spent in a car but I did pick up his new distance glasses (sunglasses and reading glasses were picked up earlier in the week) and the papers from Kaiser.

Kaiser. What can I say? It is not the Kaiser we knew five years ago. Every, single person we have met has been outstanding. Helpful. We were sent the driver's license reinstatement papers from the DMV and I dropped them off Tuesday before Thanksgiving for the neurologist to sign off on them. A very sweet woman from Kaiser phoned yesterday to let us know that the papers were ready for pickup. I was beginning to get nervous as they must be into the DMV by next Thursday. When I arrived to pick them up, the woman who helped me once again, was magnificent. I was planning to mail them overnight to the DMV office in the city. She told me that most people FAX them up and, in fact, the DMV actually prefers to receive them that way. Brilliant! So, off I went to a UPS Store and BOOM! Done! Finished! Now we sit and wait for the final step: a possible phone interview or interview in person or driving test or written test or all of the above! They will phone Michael to let us know their decision. One, big problem done.

We drove into the city to the meeting of the patient advisory board at my university hospital. Many different people attended this meeting from the last one, the conversation was lively and so smart that even the doctors were taken aback. Michael talked about it all the way home. He loved it, so different from the previous meeting. I just smiled a lot.

I am hitting the other rehab this morning before spending the day with mom. We have Christmas shopping on the agenda! This weekend, Christmas will happen to the house. The two Christmas trees and the outside lights will all be installed but it will be another week or so before I buy eight poinsettias to scatter around the house. The finishing touch!

Thursday, December 4, 2014

Old Friend Found

I am nothing but a slug. At least, that is exactly how I felt yesterday. After doing a few chores around the house, I climbed back into bed, pulled up the covers, watched the winds and rains and...the phone rang. We have been so inundated with scammers and fake telemarketers that we have caller ID and NEVER answer the phone. I ran to grab it, saw that it was one of my scammers who calls about three times a week and ran back to bed.

Relaxed and beginning to drift off...DING. Message. Michael's sister, Anna. The night before, Michael and I were looking up his old friends on Facebook and found Cheri. She was married to his very best friend PJ, they had two children, moved to the California desert and settled into life. We were all shocked when PJ died in a private airplane crash when he was just 25-years old in the mid 70s. I found Cheri then followed along to find their two grown children. It was rather shocking to find her looking so very old. Are we that old? Michael did not want to send a message but told me to let Anna know we found her.

Anna has personal history with a member of Cheri's family. She followed my instructions and found Cheri, the kids, PJ's sister and brother. She, too did not want to send a message and wanted to think about it all. This morning, I got a message that she is going to share it all with her husband today. It opened a lot of old wounds but healing wounds this time.

But yesterday, we messaged back and forth for an hour. Finally, I drifted off. I had no energy and was just tired. It was a very quiet day until Michael phoned at 4:00 to ask if I could drive over the pass to pick him up and drive him home. There was a problem with the car pool. No problem. It was nice to get out. I even did not go to the orchestra rehearsal last night. Early to bed.

I am feeling better this morning. After a shower, I will leave to give the housekeepers some peace, come back to make sure everything is turned off before heading over the pass to Costco, Kaiser then to nab Michael. Costco to pickup his final pair of glasses. Kaiser to ask about the DMV papers due to the DMV in a week. Michael to drive into the city for our patient advisory group meeting and dinner.

Rain is expected on and off all day but it is unusually warm. December and it is going to be in the mid-60s. This series of storms are clearly not coming from Alaska!

Wednesday, December 3, 2014

Dancing Between Raindrops

Wet. We are very wet and very happy. No mud puddles around us. All the rain has soaked into our parched earth. It continues with a force of wind behind it today. But yesterday? Yikes! The trip to the dermatologist into the city was long and scary and wet and very slow. It took an additional 45 minutes of craziness before I was safe and sound in the parking structure. I worked my way to Starbucks, watched all of humanity walk by the huge windows before heading for my appointment.

The doctor was running late. Really late. Finally, she arrived and was amused by my red pen circles all over my legs and back. She burned off the pre-cancerous spots with her little tool and, within 10-minutes, she was gone. I was back onto the horrible roads except things had changed while I was at the doctor's. They were empty. No one was on the road. The drive back down the Peninsula was a snap! I hit Costco, picked up two sets of glasses for Michael then headed home. He was working on his project in the garage all day, happy to see me home but I pretty much left him alone to focus.

I am going to yoga this morning and orchestra rehearsal this evening. Our focus is on tomorrow when we have to drive into the city around rush hour for the patient advisory board meeting. We had homework so we want to review that before the meeting. Should be interesting. This whole process is so new to Michael that he is a bit overwhelmed by it while it is right up my alley. I am at home,  comfortable and ready to work. It is nice to use that part of my brain again.

Tuesday, December 2, 2014

Major Storm

This should be interesting! It is pouring all day in the entire state of California. We need it badly so this is not a complaint. I have a doctor appointment at the far campus deep into the city at 10:15 this morning. Since it is difficult to get to this campus in sunny weather, I am giving myself more than my usual two hour lead time. People here go crazy if it drizzles. They come to a halt when it rains.

All this for a 20-minute appointment with the dermatologist. I have several pre-cancerous things on my legs that need to be removed along with a small cyst that I want her to cut out. That may take another appointment. With years of Imuran under my belt, my skin is no longer protected from cancer. We have a standing twice-a-year meeting to make sure any cancer is caught early. Last night, Michael and I took a red felt-tipped pen and circled all the spots. Charming!

After I crawl home, Michael needs to be driven over the pass, we will also pickup his glasses from Costco and nab the DMV Handbook. It is a car day! Me + Car = All Day. In the rain. Yippee (sarcasm)!

Monday, December 1, 2014

A Stressful Week Begins

A stressful week begins after such a nice relaxing weekend filled with Christmas movies and football games. Mom has her rehab this morning followed by a 90-minute checkup of her pacemaker after lunch. Between those two appointments, we will swing by Michael's work to pick up a paycheck, the DMV to grab a handbook in case he is required to take a written test as part of his license reinstatement and make a mortgage payment. On the way home, I will make the bank deposit and mail the bills. A long day.

Tomorrow's schedule is going to be madness. Plus, add another huge storm due while I am on the road, and it will be one wild ride! More on that later.

But yesterday was nice and quiet, Michael worked on his project, I cleaned out the bathroom cabinets, washed and ironed the sheets and made a fabulous dinner. We were in bed early and snored loudly.

I can't believe how good I feel this morning. As I worry about pneumonia, I did not take the Aprodine again last night but I did rub the Vick's Vapor Rub on the soles of my feet. Coldcalm will still be on the menu throughout the day. Insurance. But, the cold feels like it has left my body. I hope.