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.

Sunday, November 30, 2014

Rainy Sunday

Do you hear that? Rain. It is loud in the family room because of the cathedral ceiling. A beautiful sound. Keep it coming!

Last yesterday afternoon, I began feeling better. The Coldcalm had done its stuff. No runny nose or that nasty feeling of cold coming whether you like it or not. So last night, out came the Vick's Vapor Rub applied again to the bottom of my feet and another dose of Aprodine. I slept great and feel about 85% this morning. Remarkable. My plan is to wash and iron our bed sheets today then...not much else.

I am going out to buy some salad greens this morning. Since Michael has been home yesterday and today, I must make lunch for both of us. Yesterday, it was a tuna melt sandwich for him and just tuna salad with cole slaw for me. Today? My favorite Whopper in a Bowl Salad. He has never had it. It is hot chunks of ground beef tossed with greens and fresh tomatoes with the "special sauce" dressing. Yummy.

While doing a bit of house cleaning/holiday decorating, I have been enjoying Hallmark's Holiday movies. Cheesy, I know but still fun. Depending how I am feeling in two weeks, Michael wants to invite about eight of his work friends to our house for the first time. I will want the house, gardens and food to be...perfect. He also does not want it to be raining because they will have to drive the pass home in the dark and the house and gardens are so much prettier in the sunlight. We'll see. Either way is fine with me.

The rain continues and I swear it is tap dancing on the roof. It is such a good day to stay home and dry. Enjoy the last day of the Thanksgiving weekend!

Saturday, November 29, 2014

Good and Bad News

It hit full-on around 3:00 yesterday.  A cold. I took the Aprodine last night, applied Vick's Vapor Rub on the bottom of my feet and kept popping Coldcalm right up to falling asleep at 7:30. My nose is not running this morning. That is a good sign. The worry is that any cold can go to my lungs where it settles in to develop pneumonia, then into the hospital I go. No, thank you. Going to fight it again.

The rains begin today and continue through the week. The total rainfall for the week should wipe out the current shortfalls. That is good news.

Also in the good news column, William is flying into Chicago today. After a 9-week tour in Europe, he has been online trolling menus of the area's restaurants plotting his return to American food. Great food town. They are now beginning the next part of the tour as the opening band for a huge band in large arenas, which is not his most favorite place to work the sound system. But, it should be a fun ride.

Us today? Michael needs to pick some parts up from his little shop and bring them home. That's it. That's all that is planned. Okay, maybe we will go out to get some lunch. I plan to take it easy, balance the checkbook, write out the bills and prepare to jump into December. It is going to be a wild ride. Fasten your seat belts!

Friday, November 28, 2014

Thanksgiving and Turning the Search Over to the Next Generation

One winter holiday done, one to go! We had a ball. One of the nicest Thanksgivings in recent memory. Simple food, well prepared and delicious. The time flew by. My niece had asked me to bring all of the information about mom's brother, Jerome, who was a navigator of a B-17 when it was shot down during a bombing run over Breman, Germany in 1943. My grandmother had put together a scrapbook of everything she had, including the actual telegram of the bad news. She then took all of his letters and had them printed into a book. Also included was a letter written in 1946 from one of the four survivors of the crash who wrote to her with all the details of that day. He and another man were POWs until the end of the war, while two others made their way back to England. After the war, Mom's family was politically powerful enough to ask for a Senate investigation into the incident, so that report was also included.

In 1993, I got the all that information from mom's sister, Rita after William wanted to dress up as Jerome as a person from history. He needed to learn about him. He dressed up as a WWII navigator and even wore Jerome's Purple Heart. After reading everything given to me, I vowed to find any remains to have them buried in an empty grave next to his mother. I tried. I tried for a couple of years. I contact Tom Lantos who led me to The National Archives. From there, I worked, wrote a lot of letters, got the actual German documents of the crash, got the American documents of the crash and the investigation report.

I learned why and where it crashed. I also learned that it was the only plane that went down in the entire region. My guess is that the bodies were stripped of anything of value then quickly buried to cover up the theft. Jerome had a solid gold pen and pencil set that Mr. Sheaffer of Sheaffer pens had given to him before he left for Europe. My grandfather had designed their logo. Not long after the crash, the German military came to remove the plane pieces. There was no mention of bodies found in the documentation. I know that the local people would remember it. Kids would remember it. I wrote to local churches asking for their help. Dead ends. I contacted an airlines where the pilot said he was getting a job. They had nothing. Finally, it became as cold case, as they say on TV.

Yesterday, I turned it all over to Shelley and her boyfriend Russ. He is a Major in the Coast Guard Reserve and finishing up a Master's program in History. A history geek. Truly. We briefly went through the documents, he told me that he had some ideas of where he can go to move the search forward. We locked eyes. We were alone together. I said, "If you can find any of his remains that we can bury next to his mother before my mom dies, that had been my goal. I tried to do it before Rita died but just couldn't do it." He replied that I had done a ton of work and that he thinks we have a pretty good chance of bringing something home.

Wouldn't that be amazing?

Thursday, November 27, 2014


Happy Thanksgiving! I so wish the day's travels, cooking, eating and being around family fills hearts with joy. It is a special holiday, so much less drama and work than Christmas. We will be connecting with our son in Europe as he is in the final days of the 9-week tour. It seems like forever.

This morning, Michael and I will phone my Uncle Bill's widow in Tennessee. We visited with her last May, she remembered us so I hope she will be able to speak with us. She was struggling to find words.

I just sent an email to Christien in North Carolina and we are planning a nice, long chat sometime on the weekend. She just got home from a visit with her mom to spend Thanksgiving with her daughter.

In a couple of hours, Michael, mom and I will begin the long drive over a bridge and on crowded freeways to my sister's home over 100 miles away. As I am the driver this year, I am a bit nervous. While waiting for dinner to finish cooking, the entire group of us will phone Chip and Betty in New Mexico and have a nice chat. But, while we are there, I will make sure to take a moment to breathe in the sweet smells of the season and the watch the smiles and hear the laughter of a family being together.

Happy Thanksgiving.

Wednesday, November 26, 2014

Thanksgiving Plans

Today. Both of us. Alone all day. Playing hooky. Michael took today, tomorrow and Friday off of work. Three whole days! He is going to work on a project in the garage today while I hit the yards. A huge storm is due on Saturday so I want to be prepared.

We are spending Thanksgiving with my sister and her family. Since I am with mom every week, I try to leave them alone to talk and spend some time together. They are just serving turkey, stuffing and green beans for dinner. I think there may be a pie involved as well. Perfect. It will be easy to not over eat! For that, I am thankful!

But, I am nervous about having to drive over 200 miles round trip, in the dark and tired. The saga of Michael's driver's license reinstatement continues. Yesterday, I completed all the forms, had him sign everything, ran to the UPS Store to make copies then sent his personal statement to the DMV before driving to the northern most Kaiser of his primary doctor. The parking situation was a zoo. After driving up and down and through the parking structure, I spotted a car leaving a restricted area. I didn't care! Tow me! It was for limited time for the pharmacy pickups. Done. Hopped out, wandered around to find the Business Office and met Miss Attitude. "Where is the Kaiser form to allow us to fill out this form? And, by the way, we don't send it to the DMV. We give it all back to you." Great. As the form has a time limit attached to it, I am still concerned that we won't be able to get it into the DMV on time. Ah, stress. So, Miss Attitude gave me the form, which I had to drive back down the Peninsula (in horrible traffic) to Michael's work, we filled it out and I refused to go back to that parking structure. I may never be heard from again. Lost forever circling around trying to find a parking space.

So, I headed just a bit south to the Kaiser of the neurologist. Parking? Got a front spot. No waiting. Wandered into buildings and was told I was totally lost. "Cross the street, follow the path, go past two buildings, walk through that parking lot and there will be a small building." Okay, then! I stumbled around then found it, turned the forms in and learned that they would be completed in 4-5 days. They will phone me so I can go back to pick them up. We will read what the doctor wrote, then send them to the DMV via UPS so we have a tracking number. After they review all the papers, Michael will be interviewed either by phone or in person. Maybe by Christmas he will have his license back!

After all this, I ran to my rehab class and had a ball with my rehab boys. They were in fine form. After rehab, I got my toe nails done. Red. I now feel ready to face the holidays!

Tuesday, November 25, 2014

Stay Well Through the Holidays

The neurologist was jubilant and so happy for us yesterday. All brain tests: normal. He asked to see Michael in six months. All good news. Michael and I met back home after his work and after dinner, answered all the questions on the form to reinstate his driver's license. I tweaked them on the computer and will hand write them into the tiny spaces this morning after letting them marinate overnight. I like to reread everything and make minor changes. This morning, I am going to take the papers to have them copied then to the Kaiser business offices. Hopefully, they will completed and submitted soon! Drama!

My rehab boys are expecting me at class today. I need a good workout. My toe nails need painting so I will swing by the nail place afterwards to see if they have time for me.

Do you remember the woman Sherman spoke to then referred to me? She was up for lung transplants but was turned down due to the weight she had gained on prednisone. I had given her a lot of recipes and the formula I have been using: 1,200 calories, exercise everyday, 3-4 ounces of protein and non-starchy vegetables. She showed up in our class last week, as she had graduated from the 8-weeks of education and rehab. I almost did not recognize her. She had lost a lot of weight and looked so happy! She had been so depressed! It made my heart sing!

Stay well. Try to wash your hands a lot. Avoid sneezing people. Don't shake hands. We are in the holiday season where we begin to share lots of indoor time with others. Let's not share the flu or a cold.

Monday, November 24, 2014

No Routines

For the last couple of day, my life has been very simple and quiet. The upside of Michael not having a driver's license is that I have been spending more time with him than usual. It has destroyed my routine but I don't care. He is alive and functioning and feeling normal again.

I have to do NOTHING for Thanksgiving, except drive Michael and my mom to Lee and Jeff's home where we will also enjoy their daughter Shelley and her boyfriend Russ. A small gathering. William will still be in Europe. No Thanksgiving for him!

Yesterday, Michael wanted to do a few things at his shop before meeting up with the twin and a business friend. I kept myself busy by hitting the Dollar Store then CVS. Mom's CVS. While paying, guess who walked through the doorway? Yup, she did. What are the odds? We walked and talked together, she bought what she needed before heading to Starbucks for a Chai, we sat in the car and chatted some more! Finally, it was time to pick Michael up and head home.

Today is a big day for us. I will hit AAA to help us with some issues regarding the Porsche before taking mom to her balance physical rehab. After a very quick lunch, I will swing by to grab Michael for his final appointment with the neurologist. That should be interesting. This evening, we will complete the paperwork for the reinstatement of his driver's license and I will drop them off at the Kaiser business office tomorrow. Michael so needs his independence back, I would love my routine back and our lives to return to normal.

Friday, November 21, 2014

Eye Day

There was glorious, sometimes very heavy rain yesterday. The parched earth just swallowed it up! There was even lightening last night, a rather rare event here. It was also a rare Thursday as I spent it with my mom. She had her rehab in the morning and we just stayed together all day. We found a new lunch place - fantastic! - and watched the rain while enjoying a special lunch together. We ended the day by playing a brutal card game. So much fun.

Today, Michael has his 10:30 eye appointment to begin the process to get his driver's license back. Beforehand, I will pick mom up then drive over to his work to gather him and make our way to Costco for the exam. We will also help him pick out new glasses and sunglasses (which will surely drive him nuts) before dropping him back off at work. Mom and I will continue to head south for her shot in her eye. It will be an "eye day."

William and I texted back and forth with updates about his dad yesterday. He is still in Europe and is due to fly back to the US on the 29th. They will go right into concerts throughout the East coast and Mid-West opening for a huge band in arenas until December 22nd. He is so enjoying working with this group, and especially the tour manager who insists on good coffee and food, that he is staying on with them for a few months next year. He is a happy boy.

Thursday, November 20, 2014

Feeling the Stress

Yesterday, I had a facial while waiting for the dye to taking in my hair. It was the first time in weeks that I was so completely relaxed. I am beginning to feel human again. The focus, stress, and the fear of the unknown with Michael's seizure had taken it toll. I was beginning to feel like myself again.

Then, I got an email from his primary doctor. What a nice doctor. He told us we don't need an endocrinologist as his sugars can be controlled by food. And, he mentioned that he would be glad to sign off for Michael to get his driver's license reinstated, just send the papers to the business office. Papers? Onto the Internet, found some forms but then spoke with Anna's husband, the lawyer. He told me that we should have received notification with the Vehicle Code reason for the suspension of his license. We needed that number for the proper form. At his suggestion, I left a message for our insurance agent to run his license number to get this number. Then I got the mail. The actual forms were in the mail. How is that for timing?

He needs an eye test as part of the reinstatement process. And there is a time limit when all this needs to be into the DMV. I felt the stress returning. Making an appointment for Friday, we will also order some new glasses for him. Jumping through one hoop. Then he has to fill out a huge form, give the entire packet to Kaiser and hope that they get it in on time. More stress.

But for today, I will spend the morning with my mom for her balance rehab before my own rehab class.  It is a rehab day!

Wednesday, November 19, 2014

The Trifecta is Back

Through the past two weeks as I become Michael’s caregiver, I have realized that I needed to still be worried about my own health. Exercise, diet and sleep. The trifecta of staying well! All three fell away the first week after the incident when I was overwhelmed with panic and concern. Just this week, I have my focus back: returning to yoga today, returning again to orchestra rehearsal tonight, attending pulmonary rehab classes this week. After rehab yesterday, I cooked my lunches for the week along with dinner for the next few nights. Everything is ready, plated and smelling marvelous in the refrigerator. 

After yoga this morning, I am having a facial while having my hair dyed. My gray/white roots are showing! Anna wants to chat afterwards. Just a check-in. She is still so worried about her little brother. 

Yesterday, we got a reply to our email to the neurologist asking about next steps since the MRI and EEG are normal. His reply? "Stay on the drugs for two years and we will see what happens." What?!? Stay on the awful anti-seizure drugs when this was not caused by a seizure! He was feeling a drop in his blood sugar just before the incident and a seizure is a symptom of low blood sugar. I was furious. After the rehab class, I drove to Michael's work and we phoned Kaiser from the car asking for an advocate. We learned that all we needed to do was to request a referral to an endocrinologist from his primary doctor. We sent that email last night. 

From the very beginning, I told the paramedics, the Stanford trauma doctors, the Kaiser ER doctors, the neurologist, and his primary doctor that this was caused by his continuing struggle with low blood sugar. He has been keeping it stable with diet and exercise for decades. No one HEARD me. Now that we have proved that it was not a heart issue or a brain issue maybe, just maybe someone with finally listen.

Tuesday, November 18, 2014

Recipes for the Week and Good News

The news came through an email around 5:30 last evening. I phoned Michael, who was in a car on his way home. His EEG was NORMAL. Now what? We need to ask to stop the anti-seizure meds, have an evaluation of his blood sugar levels and try to have his driver's license reinstated. We meet with the neurologist next Monday.

Here are the recipes for the week. These recipes are for people who have been on prednisone for a while and we just don't process food properly. No fruit, no grains, no yogurt or milk. The goal is 3-4 ounces of protein and non-starchy vegetables. Enjoy!

Arugula, Caramelized Onion and Goat Cheese Pizza - HERE

Bacon-Wrapped Jalapeno Chicken Bites - HERE
Easy Method Houston Chicken

Baked Meatballs - HERE - I serve with Pasta Slim or other "fake" pasta.

Houston Chicken - HERE - Served with a side salad.

Mongolian Beef - HERE - Michael has rice with this and I have cole slaw.

Monday, November 17, 2014

Talking About Children

I love being a mom and so wish that we were able to have more children. Poor William, he gets all of our attention! We chose for me to stay home with him for as long as possible, which meant no new cars or vacations or going out to dinner a lot. Those nine years were the best times of my life. It was my sweet spot.

Lately, those days of raising a child, especially a teenager, have been relived with a few total strangers. It has happened so many times that I wonder if I am just feeling how long he has been out of the country and how far away he is working at the moment. Last week, it was with a mom of young teen girl and boy while waiting for my animal-style burger at In-N-Out. After a chat, she grabbed my hand and thanked me. She had been overwhelmed with some issues and I was able to take the emotions out the mix, which helped her see things in a different light.

Another was with one of Michael's co-workers. She and her husband are just now beginning to plan for a baby. She had a rough childhood but was now very close to her parents. What would she do differently as a parent? It was an interesting conversation.

The latest was yesterday during the thank you party for our neighbors. Leslie and Joe have a son from his previous marriage, a daughter from her previous marriage and a daughter together. The oldest daughter is in eighth grade and all that brings including friends, boys, school work and sports. And seeking independence. That is always hard on a mom, especially these days. At that age, we always commented to William that we totally trusted him, respected him for his honesty and that we were so very proud of him. How could he do something to lose our respect?

When he was sixteen-years old, my dad gave him their old Ford station wagon. We made sure he had gas, good tires and it was properly maintained. We told him we trusted his driving so he was never to be in another teenager's car. No problem. His group of high school friends hung out at each other's homes and when he was a junior, he asked to stay out until 2AM. Michael told him that he and I needed to discuss it and would get back to him. Michael told me that his 1AM curfew should be cancelled. In fact, he would be put in charge of himself. If his grades dropped or it was difficult for him to get up in the morning, then we would have to go back to the whole curfew thing. Michael was wise enough to see that William was going to be away at college soon and needed to be in charge of himself. He needed to feel the independence now instead of going crazy at college.

When we told him our decision, he was shocked! No curfew? We encouraged him to be off the streets by 2AM because of the bars closing at that time and it was just dangerous. He began coming home around midnight. It all became a non-issue. A couple of years later when he was living in a dorm as a freshman in college, he phoned to thank us for letting him go. He told us that he was dealing with kids vomiting in the hallways because this was their very first taste of freedom away from their parents sight and they were going crazy. They just couldn't handle it.

I guess what I wanted to share with each mom was that we felt it was important for a child to feel that they are in charge of themselves. Complement good behavior. When there was a bump in the road, pull back, explain what was expected behavior, ask what happened and what would happen in a similar situation in the future. All part of our philosophy that to discipline a child was not to punish or hit a child but to teach a child. The child looks up to the parents throughout their life instead of being afraid of their wrath or dissappointment. It may not work with all children but worked with our child. We never had an argument or a fight with him during all those difficult years. We used humor and love and admiration. We all got through it intact. Thankfully.

Sunday, November 16, 2014

Thank You Party

We had a sweet day together yesterday. I played chauffeur and didn't scare Michael with my driving too much! Lots of chores were done after we got home so both of us slept well last night. The focus of today is the little party we are throwing at 4:00. Appetizers and cocktails. A simple thank you to the neighbors who did so much for us during Michael's incident.

There is a plan of a quieter week ahead, thank goodness. As Thanksgiving will be at my sister's this year, mom and I are going to buy a little something for her tomorrow. Shopping. Always fun with mom.

So within minutes, I will begin my day dusting, vacuuming, throwing on clothes to do a quick Safeway run, picking up the garden and doing a bit of watering of the pots. Then the food preparation begins. It should be a fun Sunday.

Saturday, November 15, 2014

What a Week!

Rough week. Lots of driving. Too many doctors. Not enough answers. I was done and ready for bed by 7:30 last night.

The EEG results will be given to us next week. We are not amused. The wait is horrible and I know the report is finished. I am worried that it is bad news. I am hoping that it is not the slam dunk the doctor is expecting and I can push that it was caused by a dramatic spike then crash of Michael's blood sugar. In the meantime, I worry.

My mom is suddenly walking with so much more steadiness and her balance has greatly improved. The physical therapy routine has been so very helpful.

I had the good news about my liver being stable after years of prednisone and a nice check-in with the nutritionist this week.

What I have missed this week has been consistent exercise. There has just been no time with all the drama and doctors. Today, I am driving Michael over the pass to work on a project while I workout at the other rehab. We will meet for lunch then come home. I have lots of laundry and preparations to complete. We have invited Ron, Susan, Leslie and Joe for cocktails and appetizers on Sunday afternoon as a simple thank you for all of their help during the incident.

Friday, November 14, 2014

Crazy, Stress-driven Dream

I am exhausted. Yesterday took it out of me and I have to face more today. The drive into the city was the worst ever, needing an additional hour to make the trek. The meeting with the liver doctor went well, I only have to check-in with them once a year to have a new scan to track my liver function. They will also be writing a memo approving me for lung transplants, if needed. A good appointment!

Then the race began. Back down the peninsula, the major freeway was stopped due to accidents so I had to go another way to mom's house to quickly grab Michael's cell phone and jacket we had left the day before. After a very quick visit, I continued to make my way through horrible traffic to his work to deliver the phone before going to the rehab class. It was such bad traffic that I arrive to the rehab class with just minutes to spare. The reason for the horrible mess? Rain. Not a huge storm. Not lots of winds. Just a drizzle. People here freaked out.

Did I mention that I will do it all again and am even going further into the city this morning?!?!? It is drizzling again...

Stress of Michael incident, dealing with his doctors and waiting for the results of the EEG is invading my dreams. They are wild, crazy and making no sense. Last night, I had a dream that our friend Joanne from Ohio came to visit me at my parent's old house, there were no extra bedrooms for her so she was sleeping on a stair and my sister was sleeping on a stair below her. I felt terrible that she was going to sleep there but she kept insisting that she would be just fine. Such vivid dreams are rare for me.

Thursday, November 13, 2014

Throwing Michael Around

After throwing Michael around in an exercise the doctor taught us to help his vertigo last evening, his steadiness was much improved this morning. It was weird. I took his head, turned it towards me and quickly laid him flat on the bed, held him then turn his head the other direction then pointed his nose to the floor. We did it several times. Michael finally read the handout while I was at the orchestra rehearsal last night and discovered that it recommend that we do this 10 times in a row! Each time, he got dizzy and nauseous but less and less with each exercise.

The EEG went just fine. After 30 electrodes were attached to his scalp, he was entertained with flashing lights and noise before silence. He fell asleep. Now, we wait for the results. Does he have a seizure disorder? If not, we will ask to see a hypoglycemia specialist.

Me? Today is the meeting with my liver doctor to discuss the recent liver biopsy. With ten years of prednisone under my belt, there were indications that I had developed cirrhosis, which would then be difficult to gain approval for lung transplants. No cirrhosis in sight. Jumped through that hoop!

After our meeting in the city, I need to grab Michael's phone at my mom's (we forgot his jacket there yesterday), deliver it to his work, run to pulmonary rehab, buy a pound of Peet's coffee on the way home then make a fantastic dinner of Chicken Cordon Bleu and braised cabbage. Another full day after a late night. We are looking forward to a quiet weekend!

Wednesday, November 12, 2014

Let's Have an EEG Today!

Still sneezing a bit. Still taking Coldcalm and feeling...better. Michael's office friend Thomas and his wife Julie are heading to NYC today to introduce her to a few of his relatives. It was also his birthday yesterday. We arranged to have me meet five of Michael's office friends on the Avenue to have drinks and food. I got there early, discovered a $6.00 appetizer happy hour and ordered up before they arrived. The mom in me wanted to be sure everyone had food in their stomachs. It was fun. They are all our son's age! It was a very unusual Tuesday night for us. We didn't get home until 8:00!

With Michael's EEG this morning, he had to stay awake until midnight then only sleep five hours. It worked. He is now in the shower because he must have clean dry hair. We leave in an hour.

Michael phoned William in Sweden yesterday and thanked him for all the questions, concerns and the offer to fly home. He was very touched. William replied, "You're my dad! Of course, I am very concerned!"

Meeting with the primary doctor was interesting. He was humored us about the blood sugar. He was impressed that his normal fasting rate seemed to be 80. Not too low. He ordered some blood tests and told us to contact him if Michael often tests in the 60s. Um, thanks.

The results of the EEG should be ready later today. Does he have a lot of small seizures happening? Was this a fluke due to his blood sugar? We'll see.

Tuesday, November 11, 2014

Lots of Questions

William had many questions for me through text messages yesterday. I guess after sleeping on the news that his dad had a major seizure, he got on the computer to do some research. He also offered to quit the tour and come home to help out. Michael was rather touched but I responded that his dad was at work all day and was doing really well. Improving daily. I do understand that he was feeling isolated and very far away.

The sneezing began yesterday and I felt the early rumblings of a cold. Out came the Coldcalm and the Aprodine and I am feeling better. After the meeting with the doctor this morning, I will drop Michael off at work, head home to cut the grass since it is supposed to rain on Thursday, then meet him on the Avenue for cocktails at 6PM. Well, he and I won't have cocktail but we will be hanging with several of his work friends. Thomas and Julie are heading to New York City so Julie can meet some of his relatives. A bon voyage party.

Mom and I enjoyed her rehab yesterday. She was working on her balance and the strength in her hips. The PT loved her as she just really wanted a good workout. I guess that was rare for a woman of her age. She needed a thyroid blood test at her university hospital before we had a fantastic In-N-Out Burger for lunch (protein-style for me). After Trader Joe's, I screamed home to get some Braised Short Ribs in the oven for three hours. They were delicious for dinner for a very cool Fall day.

Michael's highly anticipated doctor's appointment is today. We tried the new blood testing monitor yesterday and he tested his blood after dinner and before bed. Stable. 104. 108. After a week or two, we will try to replicate the food before his crash. We just realized that he had also pulled back from milk because of the latest finding that it is not the best for you. He has been drinking a gallon of milk a week for a long time. That along with the high carb lunch did him in. So we think. Now, we have to prove it. Today begins that challenge.

Monday, November 10, 2014

Finally Sharing with our Son

Gearing up for the week. Mom has her rehab today followed by some food and Christmas shopping. Yes, I said the word I have been avoiding and refusing to walk down any aisle in any store that has Christmas displays. But, she found the Macy's Christmas store and...well, we need to check it out.

My birthday was very quiet, which was just fine for the two of us. We were both needing a day off. William was on tour with a stop in Basil Switzerland and phoned after the concert around 3:00 our time to wish me a happy birthday. It was great to hear his voice, even though he had a screaming cold. I hate it when I know he is sick. I want to fly to wherever he is, make chicken soup and hover over him. We had been waiting for this call.

He and I made a deal that if he was out of the country and I got sick, he wanted to be told when it all settled down rather than just going into it. He said it made him feel so helpless and wanted to hear what happened, unless I went down hill. So, when Michael has his seizure, we knew he would phone me for my birthday a week later and we would have more information about what happened to him. I was able to relay the basics to William then he spent a long time talking with Michael, which helped calm his anxiety.

Michael is feeling like he is 75-80% of normal. He is still very unsteady, especially in the morning. Dizziness is also an issue, which I believe is related to his inner ear fluid getting messed up in the fall. We plan to see his primary doctor tomorrow and will discuss the blood sugar and inner ear issues.

I am looking forward to my Thursday appointment with the liver doctor. It will be our first chat since my liver biopsy so I will have more information to share afterwards.