Hello 2014

The back is better this morning. I realized that sleeping on my back might have caused yesterday's pain. Last night, I flipped side to side and I have just a bit of pain this morning. Thank goodness. I am going to take it easy today but I do plan to remove Christmas from the house a day earlier than our tradition. It became a tradition when Michael couldn't find the time to remove the outside Christmas lights until I finally had to climb a high ladder to remove them in July. Yes, July. When it was time to hang the lights that December, I told him that we would not have lights anymore. WHAT?!? We made a deal that the lights had to come down New Year's Day. It has been our tradition for many years.

Also, we have a rather recent New Year's Eve tradition of lighting a fire, sipping champagne, listening to music, eating dinner in front of the fire and talking about the previous year and our goals for the new year. Dinner tonight will feature a small rack of lamb and roasted vegetables. Simple but elegant special treat.

One of my goals stated yesterday is to return to the Weight Management Clinic to drop just a bit of weight. A month's worth of weight while I am on the liquid protein/bar diet. I did phone them to ask if I could just return or if I needed another referral? A new referral was requested from my favorite endocrinologist Dr. M., who wrote the first referral three years ago. I got an email from him yesterday confirming that the referral was sent so I will follow through with a phone call this morning for an appointment to get the ball rolling. I am excited to get going.

Mom and I ran a ton of errands yesterday and talked non-stop for hours. I was thrilled to learn that she played poker Saturday night with a group of men and women at her independent living complex (though they play quarters, she only lost $2 and is actually a really good poker player!) and she is actually going to the New Year's Eve party this morning from 11-2. She usually doesn't like going to those events as she is so touchy about her food but it is being catered by the facility. She has an eye doctor appointment on the 2nd for a shot in her eye and we plan to have our toe nails done on the 3rd. What a way to begin the New Year!

Have fun this evening as we welcome 2014!

Lots of Pain

I am in pain this morning. There was hardly any when I got up around 3AM to use the bathroom but at 6AM, I hopped out of bed and nearly collapsed. It hurt. Really hurts. I just ate an early breakfast so I could take two acetaminophen tablets to relieve it a bit. I won't be going to the other rehab. Nuts!

The day will be spent with mom, doing errands, paying bills and trying to find a prepaid cell phone for her. She just will not have a regular one as she doesn't want the monthly payments. I also will be phoning the Weight Management Clinic to see if I need a referral or if I can book an appointment as a returning patient. I want to get going sooner rather than later. The plan is to be on the protein shakes/bars for a month plus another month to return to three meals a day to my life before our trip in May.

As ardent Formula 1 fans, we were shocked to hear about Michael Schumacher's skiing accident. He is the most winning driver of Formula 1. He just retired. The reports are not great and that it is hour by hour. We are pulling him and praying for his recovery.

Looking Forward

Well, I filled the garden recycle can to the brim again yesterday. There was more hand trimming happening than I had planned. The weather was so wonderful, it was easy to listen to music and continue to just clip away. My back feels a bit stiff this morning but no worse than before the gardening episode. I did make sure to be masked the entire time.

Then I napped. I felt like a cat in the sunshine streaming through the windows.

I am considering the new year ahead. We are planning a cross country road trip in May, if my health allows. The thing that is bothering me is the recent pneumonia. Is this the beginning of a downturn to my long term health? Will this be the year I crash and need new lungs? Will I recover and regain my general good health? Stay tuned!

My wish is that 2014 is a healthy year for me, that I lose about eight pounds so I can enjoy the month long road trip and that Michael remains healthy. Simple though important goals.

Pain the the Back

A couple days before Christmas, I was leaning over from the waist to check some garlic bread in the oven when something happened. When I stood up, I had incredible pain in my lower back. It was a simple as that. I took some of Michael's acetaminophen and it dampened it a bit. Two days later, I had to sit in the back of a small car for two hours one way to Christmas. More drugs. It is much better now but it is still a shock to feel something when I get up in the morning or if I sit too long.

With that in mind, I have to do some trimming in the yard today. No cutting. No pushing a mower. Just hand trimming, which should not hurt my back. I hope. We are also having the drying winter on record ever. No rain since a small storm in October. My sprinklers are still set on their summer cycle. Crazy dry. I hope it ends soon!

The house feels so empty after having William with us for over a week. No more eating out. We had a small dinner last night and it felt great to eat our normal food once again.

New Years. 2014. Just around bend. Incredible.

Back to Normal

He is gone. It is 6AM and I just returned from an airport run with William. Seattle and his own bed awaits him. It has been a nice week and the house suddenly feels empty.

While walking into the packed restaurant at the harbor last evening, I ran into the percussion teacher from the schools where I got sick. He was stunned. I do look very different from when I left in 2005. He confirmed the things I have heard about the changes to my department and we had a nice chat. After dinner, we dropped by Wayne and Jill's for a couple hours. They have known William almost his entire life and love to connect with him whenever he is in town.

I am tired, not coughing too much but really do need some downtime. After some sleep this morning, I need to pay some bills, balance the checkbook, food shop for the weekend, water the yard, run a load of laundry, pick up the house and make some dinner. A normal Friday.

2013 Christmas Recap

We had the nicest Christmas. Lee and Jeff had continued our tradition of serving food from another country or region each year. In the past, we have featured food that grandmas were making for the holiday in Greece, Italy, Spain, France, England, Germany plus New Orleans and even our little coastside so we were excited to discover this year's theme. It was Southern US foods. Lunch featured small pulled pork sandwiches topped with cole slaw and other appetizers before a dinner of fried chicken, collard greens, corn and biscuits. Such fun.

Shelley was there with Russ, who we just met at Thanksgiving but seemed to fit right in. William hung with them most of the day. Lots of laughing.

Today is a big day for Lee and Jeff. They had to be in Sacramento by 6:00 this morning. Jeff is having surgery on his neck to relieve the pressure that is making his arms and hands cold and he is beginning to have functioning issues. He had a similar surgery five years ago but now this third vertebrae needs support from cadaver bone. It is a very scary three-hour surgery. So, our thoughts are with them this morning.

William and I will hang out here at home today, he will do some packing and I will pull the house together while Michael works. For dinner, we plan to eat Lobster Rolls at the oceanside restaurant for dinner just minutes from our house. If it is not too late after dinner, we will stop to see Wayne, Jill and the boys. William wants to see them before he flies home at dawn Friday morning.

Me? I sat and did nothing all day yesterday. My back is better (forgot to mention I pulled something two days ago) and I really didn't cough much. But, by the end of the day, I was exhausted. It was heaven to climb into our bed, pull up the sheets and give a moment of thanks for the lovely day filled with family and the spirit of Christmas.

Merry Christmas

Merry Christmas! My simple wishes are for everyone to enjoy being with family today and also being grateful for having made it to celebrate one more Christmas on this planet. That is my simple goal each year: just to be able to enjoy one more Christmas.

I hope you have gained knowledge and strength and maybe even a bit of confidence living with a disease from this blog. And even laughed a bit. I am honored to have been allowed into your lives. Thank you and Merry Christmas.

Pneumonia for Christmas

It was what I feared. I have pneumonia in my lower left lobe along with a lovely fever. The local doctor was able to see me yesterday afternoon but I will be contacting Dr. K. to give her the news.

I knew it might be bad when I rolled the garbage cans up the driveway right before the appointment and noticed I was very short of breath. I checked my saturation rate and it was 88%. I normally would not desaturate during that task.

After listening to my lungs, she asked how I was feeling. Flu-like symptoms? Generally not feeling well? I really didn't feel badly but just tired from all of our late nights with William. Apparently, had I answered that I didn't feel well, she would have admitted me into the hospital immediately. Dodged that bullet. I am so happy not to spend Christmas in a hospital.

All the plans will change for today. Michael and William will take my mom to Christmas Eve lunch while I stay home. This evening, they will head to our friends who own a fishing fleet in Alaska for a Christmas cocktail before walking over to Ron and Susan's next door for a sip of champagne with them. Ron's daughters will be there for the evening and Ron invited us after looking up to the ceiling at William when we were at the other neighbor's house. He had not remembered how tall William was and I think he might be playing a bit of matchmaking! His daughters are both younger than William, gorgeous, one just passed the bar and the other is taking her LSATs after teaching in lower income schools for the past three years (Americares). It should be interesting. I wish I could be there to watch it all unfold.

And my plans? I will get dressed. That's about it. I want to save all my stamina for Christmas Day.

Glorious Day of Nothingness

Nothing today. Nothing planned. Nothing expected. Nothing to have to do. It is a much needed break.

Michael fell into bed at 8PM and he had a panic start to the day when he awakened more than an hour later than usual. Off to work he went, still in a sleep fog. He is fighting a cold with lots of sinus issues but says he feels pretty good. His work should be light today as there is going to be a Christmas lunch and there is a rumor that they will close a bit earlier this evening.

We rested and napped yesterday while waiting for the sound guy to contact us. Never happened, which actually was fine with me. By 3:00, we were at mom's to bring her back to our house to spend some time in front of the roaring fire with William by her side. Our friend Randy dropped by with his three Boston Pugs and regaled us with stories and a bottle of this year's batch of Kahlua. I took a sip. Delicious.

I am coughing. It doesn't sound good. Actually, I feel much better this morning but I am still going to phone the local doctor to have her listen to my chest.

With no other plans, it will be interesting to see how the day unfolds.

Wild Times

For the first time ever, I think I will exit the holiday season a few pounds lighter. We have been so busy and my food choices have been so good that my clothes are looser. What a great feeling.

Yesterday, I ate very little for breakfast, less than normal for lunch and dinner was light. We met up with British Don after spending two hours with our neighbor's Rick, Natalie and Melanie. It brought back so many memories as Melanie was talking about the whole college application process. She is ready to fly. They celebrated our birthdays and anniversary as we never got together because Natalie has been slammed getting a degree to teach nursing, which has been grueling. It was fun to get caught up with their lives last night.

One of the five restaurants owned by our friends is Pepito's, which is tiny but the food is marvelous. They serve three different choices of housemade salsas and chips. The tacos are tiny but packed will flavor. They are wrapped in two very small corn tortillas, served two per plate. William and I had one with duck confit carnitas, homemade pickles, mint, chipotle tamarind sauce and the other with marinated pork shoulder, roasted pineapple, onions, cilantro and salsa verde. Yum. He also had shrimp ceviche and some of Michael's duck confit quesadillas. He was very happy. Afterwards, we drove to a wine bar near Pac Bell Park that was very SF with high ceilings and exposed old brick. We sat for a couple of hours and listened while Don and William entertained us. It was very fun. Since I don't drink, I was the designated driver for the drive back down the coast. We fell into bed at 1AM.

I did notice that I am coughing again. The plan is to ask the local doctor to listen to my lungs on Monday. But, today - it is going to be a wild ride. We have three plans but no time. The owners of the restaurant on the ocean invited us to their ranch with its authentic log cabin home, which is of huge interest to William. We also have arranged to meet a friend of Michael's who is a major dealer of home sound equipment. William has a list of equipment he wants to buy. Finally, mom is due for dinner. We told her we would be at her home around 3PM, drive to the coast, hang out, have dinner then drive her back home later this evening. It is going to be another long but fun day.

This morning, I need to wrap some presents, put a few things away and generally pull the house together for her visit. It always warms my heart when she and William are together. They have such a nice relationship. I will stumble on them, with their heads together, having a fun conversation and laughing and I notice a sparkle in both of their eyes. It always makes my heart sing.

Spreading Happiness

Michael came home sick. He thought it was allergies but I think it is a huge, nasty cold. We still went by our neighbor's Joe and Leslie's house for an hour to visit and listen to some Irish Fiddling, which was so much fun. The singer was adorable and the old Irish songs were hilarious! From there, we drove through the new tunnel to the restaurant right on the ocean. There was a nice 12-piece band playing, a singer who sounded like Sinatra, a girl singer and the owner's son also joined in. It was fun. Michael gave the owner a bottle of the now impossible to get "Alchemist" bourbon, we ate some crab, William had a smoked trout salad and garlic bread. We fell into bed around 11PM.

Earlier, William and I met my former student and now friend Michael and his mom Dolores for breakfast at an old creamery in Palo Alto. Adorable. Delicious. Michael and William remembered each other when William would come to the school. He is transitioning into his PhD program and is beginning to understand the processes. It was marvelous to spend some time with them both. As William said afterwards, "What truly nice people!" Amen.

After breakfast, William and I went into the fancy new Apple store on University Avenue in Palo Alto. William bought a new airport for me and iTunes gift card for my sister and her husband. But, after four cups of coffee and two glasses of water, I needed a restroom! A nice Apple guy "escorted" me to the second floor, waited then escorted me back to William. On the way, I asked if he was seeing family for Christmas. That opened a conversation about his family in Turkey. I asked where in Turkey. Ankara. It was then that I mentioned that my son loved Istanbul. He introduced himself to William, they talked about the street food in Istanbul and I think we both made a new friend for life. We all hugged when we left.

William and I hung out at home, set up my new airport with the older one used as a booster and waited for Michael to arrive home. It was nice. The sun was streaming in and there was time to chat, relax and just be together.

The plan for today was for William and Michael to run a lot of errands together then we are to be at our neighbor's Rick and Natalie and their daughter Melanie home for 90-minutes before meeting British Don in the city for a late dinner of duck confit tacos or quesadilla. But now with Michael not at the top of his game, all plans might fly out the window!

He is Home

The eagle has landed. William is home. (At the airport waiting for him, I had great conversations with a lady who worked for Carnival Cruises who was waiting for groups of people flying in, a woman from South Africa waiting for her son from Florida and a charming kid from Brazil but in college in Canada who was waiting for 13 of his buddies who are all driving from SF to LA together and ending in Las Vegas for New Year's Eve.)

He looks good. We first drove by my rehab class to give a thank you envelope to the young woman who works and has control over the very small parking area. It is a tough job and she handles it with grace. She also saves a parking place for me! We met Michael at his work where he introduced William to a few of his workmates before we went to lunch together. Then to the fancy bourbon store and Bev Mo for William to buy a few gifts before driving over the pass to the harbor for crab. Four crabs. Delicious, rich, silky, perfectly steamed crabs. We hung out at home, he transferred my Amazon Cloud music onto my iTunes, showed me his Kindle (I think I must buy one) and talked the afternoon away before Michael arrived home from work.

He also loved the baklava and Nespresso.

After dinner, he and Michael had a small bit of the good bourbon while looking at William's 1966 Mustang convertible in our garage. The plan is for the two of them to paint it this coming summer. They noticed that our neighbor Joe was hanging more lights and went over to bring him a bit of bourbon - just to warm him up! I brought over a gift of baklava for the family before I notice their neighbor Kevin was out turning on his Christmas lights. "I have something for you," I said as I scurried home to grab his gift of baklava and back to the neighbors where we all stood and chatted for a bit. Joe had just returned from four days on the beach in Hawaii and was still dreaming of the sands and the beaches. Did I mention it was so very cold?

I headed to bed, leaving Michael while he was eating a piece of baklava, and drifted off hearing the gentle sounds of the two of them talking and laughing and simply enjoying each other. My heart was filled with joy and happiness. I am truly blessed.

Report on the Pulmonary Fibrosis Foundation's December Conference

Susan, from our ILD Support Group, emailed the below to our members yesterday. It is short report on the PFF conference  earlier this month. 

PFF Summit 2013: An Environment to Improve Education, Facilitate Research, and Increase Disease Awareness

CHICAGO, December 17, 2013 /PRNewswire/ -- The Pulmonary Fibrosis Foundation (PFF) presented its second biennial healthcare conference, PFF Summit 2013: From Bench to Bedside, in La Jolla, California, from December 5-7, 2013. The innovative conference brought together medical professionals, patients, and caregivers for a three-day meeting. Over 520 people, including individuals from 16 countries, attended the PFF Summit 2013. Gregory P. Cosgrove, MD, Summit Co-Chair and PFF Medical Advisory Board Member, commented on the importance of the conference: “Once again the Pulmonary Fibrosis Foundation brought together all facets of the pulmonary fibrosis community to collaborate, educate, and inspire; it was a truly remarkable meeting.”

An outstanding international faculty presented lectures, participated in panel discussions, and conducted question and answer sessions. “I am thankful to all of the Summit faculty who contributed to making the PFF Summit 2013 a success. They helped create thought-provoking and educational dialogues that we need in order to develop better therapies,” remarked Patricia J. Sime, MD, Summit Co-Chair and PFF Medical Advisory Board Member.

The PFF partnered with National Jewish Health to provide this unique continuing medical education (CME) program. Scientific sessions included presentations on lung injury and repair, genetics and biomarkers, and drug development. Some of the topics discussed during the clinical sessions were: difficulties in making a confident diagnosis, what are the available treatment options, how to treat co-morbidities, and effectively communicating with patients and caregivers. The session concluded with an update on global perspectives and ongoing clinical trials.

Concurrently a program took place for patients, family members, and caregivers to address their educational needs as well a discussion on how to live better with pulmonary fibrosis. All sessions will soon be available as webinars on the Foundation’s website at www.pffsummit.org.

“PFF Summit 2013 brings value to all members of the PF community – as an educational resource, as a catalyst for change, and as a symbol of hope, “said Martin Kolb, MD, PhD, Summit Co-Chair. “It was a great opportunity to help plan this type of a meeting where healthcare professional, researchers, and patients attended. It was extraordinary to see it in action."

The Summit “kicked-off” with a Welcome Reception and Poster Presentations on Thursday evening, December 5. Posters were submitted from both academic institutions and the pharmaceutical industry. There was much new research contained in the posters. All who attended the reception were quite impressed with the originality and quality of the posters. The first place poster award went to Andrew Bryant, MD, of Vanderbilt University, for his presentation on “Endothelial Specific Inhibition of Hypoxia-Inducible Factor Blocks Development of Pulmonary Hypertension Associated With Lung Fibrosis.” The top poster awardees were able to present their research during the Saturday morning session.

The keynote address, “Cystic Fibrosis Therapeutic Development: A Game Changer,” was given by Robert Beall, PhD, President and CEO of the Cystic Fibrosis Foundation. Dr. Beall discussed some of the drug innovations that have dramatically improved the lives of individuals with cystic fibrosis. Friday also featured a special luncheon presentation by John F. Crowley, Chairman and CEO of Amicus Therapeutics, titled “When Advocacy Research is Personal: The Importance of Advocacy in Drug Development and Innovation.” His experience with his children’s diagnosis of Pompe disease, and his unrelenting pursuit to help them, profoundly inspired the audience.

All attendees were invited to a Networking Dinner on Friday, December 6. The evening’s highlight was an announcement from Daniel M. Rose, MD, the PFF’s CEO and Chairman of the Board, that the Foundation will commence the PFF Care Center Network and PFF Patient Registry. This initiative should improve the health and quality of life of patients with pulmonary fibrosis. In addition, it will help provide critical insights that will enable the research community to develop more effective therapies. “To make progress with this disease, we need a multidisciplinary approach by teams of expert medical professionals, we need more data, and we need to track the natural history of the disease,” said Dr. Rose. “The Care Center Network and Patient Registry will provide the framework for improved patient care and progress towards a cure.”

The Networking Dinner also featured speeches by representatives from the Summit’s two lead sponsors InterMune and Boehringer Ingelheim. The program closed with the PFF’s Patti Tuomey, EdD, President and Chief Operating Officer, leading a toast thanking the faculty, sponsors, participants, and PF community for their dedication and support.

The Pulmonary Fibrosis Foundation would like to thank the following sponsors for their generous support; Everest Sponsors: InterMune and Boehringer Ingelheim; Shasta Sponsor: Genentech; Grand Teton Sponsors: Biogen/Idec, Stromedix, PatientsLikeMe, and Inspire; and Friends of the PFF Sponsors: Mike and Donna Henderson, ImmuneWorks, and the Phyllis Dirks Demont Trust.

PFF Summit 2015: From Bench to Bedside will be held November 12-14, 2015. Information about PFF Summit 2015 will soon be available at www.pffsummit.org.

Gifts of Pulmonary Rehab

For over an hour, the three of us sat in the entrance area of the hospital where I go to the pulmonary rehab class. Sherman, Dick and I exchanged gifts, stories, recipes and Dick was looking at the pretty young women walking away from us. "It's a good day!" he would say loudly.

Dick was planning to buy five fresh crabs at our harbor for his Christmas dinner, Sherman was talking about the tiramisu at his favorite restaurant where he was going on Christmas Eve and I was talking about all the places we are planning to take William while he is in town plus the runs to the harbor for fresh crab. And garlic French bread.

Suddenly, Dick said, "This is what I look forward to all week." Sherman said, "Me, too. How do you ever explain this? My daughters don't get why I come so early and I really can't tell them everything we talk about. It doesn't make sense when I try to explain it all."

I said, "It's not about the exercise. It is about having a chronic disease and not being so isolated. It is about social and emotional support." The friendships, the laughter, the "having to be somewhere" after being declared disabled, gave me confidence to create and move forward to the next phase of my life. Pulmonary rehab saved my live in so many ways. It also saved my spirit and my soul. And I got two very best friends in the process.

Give Me Oxygen!

It is now official. I proved I still need supplemental oxygen and Medicare along with AARP's United Health will continue to cover the costs. That was a close one. I phoned Apria yesterday morning after I worked out at the other rehab, explain that I received a letter from them stating that the documentation from my two-hour exercise test to show that I desaturated at 88% was not completed and they will soon  require that I pay for my oxygen needs out of pocket. After a bit of research, my new best friend LaToya told me that the letter was dated 12/9 and they received the signed paperwork on 12/10. Everything was good. Fine. No problem. Huge sigh of relief.

Onto mom's. She was still struggling with a cough, went to immediate care again on Saturday and was on antibiotics again. She was feeling better yesterday. Hopping in the car, we first tried to find some Stax firewood for the holidays. It is designed to burn without an odor and doesn't bother my lungs. Couldn't find them. We then went to Honeybaked Hams and we were so happy that it was not crowded yet. Mom had been dreaming about their ham salad that she had decades ago in Florida. We arrived and the nice young woman told us they would make it for mom. While she and mom were talking, I spoke with the woman making it. I told her that we are always trying to find food that mom will eat and thanked her so much for going the extra mile for her. She told me to call ahead so we wouldn't have to wait and she would make as much as mom wanted. How sweet is that?

We then made our way back to our area for some See's Candy for my rehab boys and William. There was a little cafe next door, so we stopped for lunch and I was thrilled to see mom eat more that she usually eats. When she doesn't feel well, she just doesn't eat. She looked very small and frail, so I was so happy to watch her eat chicken and salsa and cheese!

The next stop was Trader Joe's where the checker we have grown to love announced that she became engaged last night! We hugged and she was just so excited. She told us several weeks ago that she spotted something that warned her that there was going to be a ring soon. We all thought it would be on Christmas. I dropped mom off and was home by 3:00 to watched the clock until Michael walked through at 3:30. His tooth was still not ready to replace the crown. The dentist cleaned it all out again, installed a new temporary and Michael said it feels better.

Today? Presents and cards will be handed out at the final rehab class until after Christmas. Michael is going out with the twin, Ricky and other men for their annual Prime Rib dinner, so he will not be coming home after work. It always feels weird when that happens. I teased him last night, "You are having Prime Rib? I guess I will have an egg for dinner. Or maybe just a piece of cheese." He was laughing then described in detail the creamed spinach and the huge baked potato he was also planning to order. It is good for him to be out with the guys to talk their men gossip and cars. Good for his soul.

We are on a march towards William arrival early Thursday morning. It was 70 degrees here on the coast yesterday and will continue to be mild today. A big blast of cold air from the north is due on Thursday. Of course. I was hoping it would continue while he was here.

Christmas Presents

It was suddenly so warm and calm for a few hours yesterday that we sat out in the garden before dinner. The past week has been so frigid, it was a gift to sit on the swing and chat and marvel at our good fortune, weather-wise.

After a very quiet day, I will now begin another set of phone calls. A letter from Apria was in the mail on Friday evening, too late to respond to until this morning. It has bothered me all weekend. Apparently, there is a problem.

Medicare requires specific proof every few years that I still need supplemental oxygen. Fine. First hoop jumped: A walk to prove desaturation below 88 percent then the walk again with oxygen to prove that it helped. Denied. Second hoop: Two hours on a bicycle to desaturate down to 88, recover, repeat with oxygen. Denied.

I don't know what else I can do? It is going to be an interesting phone call.

Michael will finally complete his root canal and will be home later this afternoon. I should be home by then after spending a few hours with mom. I have a to-do list including presents for my rehab boys and food to have on hand for William. Three more days before he arrives. I read something on Facebook: As one gets older, the best presents can't be bought. That is so true. He is my Christmas present.

Too Much

I did waaay too much yesterday and will pay for it today. It began with banking and grocery shopping and hauling all the bags into the house then two beds were stripped of their sheets while I wrapped the final presents, which took almost two hours. With the presents now under the tree, I ironed two sets of sheets and remade two beds. Lunch break before gardening.

The garden: not too bad. A quick cutting of the grass, gathering of leaves and watering. Should not have been too much. Then I remembered that Michael mentioned the huge ferns, which just one day appeared along the side fence between the drunk neighbors and our house in a four-inch piece of dirt and I let get big. It would not be good for the drainage, if we ever see rain again. (We are in a drought!) I decided to tackle them.

After hand cutting handsfull of fern spears, I found that I could grab near the roots and pull as hard as I could and the entire root system would come out. Perfect. Well, it took a lot of cutting and pulling and hauling baskets full to the garden recycle before the job was finished. Even with my oxygen turned up, the motion of bending from the waist and pulling with all my strength caused me to be short of breath. I had to take breaks. It took just about an hour to get them all removed, the huge recycle bin filled to the brim and the area cleaned. An hour of heavy working.

I crawled into the house and just sat to recover. It took a bit before I was able to carry on. Michael arrived home, shocked that I was able to do everything. He thought I would do the ferns with him or just a bit at a time. I was so clearly finished that he went out and brought dinner home. There was no way I was going to be able to cook. I forced myself to stay awake until 8:00 then I climbed into a bed of freshly washed and ironed sheets and passed out. It felt marvelous.

Today is recovery day. There are candlesticks that need cleaning and poinsettias that need ice cubes for water but other than that, nothing today. Well, maybe Christmas movies on Hallmark and Lifetime or even a couple on DVDs. A quiet day.

Ready for Christmas

Okay, I bought a lottery ticket. It was for a chance to win over $400M, for heaven's sake! What a shock to discover that I won my money back! A whole $5.00. Now I have to decide if I will buy another one for a chance at the $550M on Tuesday.

I was on a mission yesterday. Christmas shopping needed to be completed, finished and done. Mom and I hit the stores early, found jewelry for my sister and I spent the rest of my Christmas money. We had a ball. We even stopped to watch our favorite Santa. He takes interest and extra time with each child.

While in Macy's, I was buying some trouser socks for one of my presents when I asked the young woman helping me if she was having people over for Christmas or was she going somewhere. It began an amazing conversation. She came out from behind the counter and told me about her grandmother. She was the matriarch of the family and after she passed away, there were no longer any traditions. They died with her. This young woman's mom just didn't know how to create new ones. She then told me that she missed her grandmother everyday but especially this time of year. I hugged her and told her that everytime she thought of her grandmother, she was with her. She replied, "I know. I feel her." It is remarkable how woman share such personal information with strangers.

After two hours of shopping, we walked to Max's for a bowl of my favorite Russian Cabbage Soup. It was packed. Mom was overextended, her back was beginning to hurt and didn't have her normal stamina as she really had not been out into the world for a week since getting sick. She sat while I put our name on a list for a table with a waiting time of 15-20 minutes. We settled it and began to chat when suddenly the manager appeared. He recognized us, grabbed two menus and immediately seated us. We were very touched. What a nice holiday gift! Then, our favorite waitress was assigned to our area and we were so well taken care of, it was lovely.

I dropped mom off then headed over the pass. Suddenly, the traffic stopped. We sat without moving for twenty minutes. We moved for maybe a half of a mile then we sat for another twenty minutes. It took just over an hour to get home, well exceeding the normal ten-minute drive. There was a roll over accident blocking all lanes. It was still as mess when Michael was on the road almost three hours later.

Today, I am going to the bank then to Safeway to buy gift cards for Christmas presents. I also ran out of wrapping paper! Then, it is into the gardens for me! It will be my last time before Christmas.

Shopping and Medicare Problem - Done

We shopped until we dropped last night. We are ALMOST finished. Mom and I will be at Stanford Shopping Center today for the final few gifts for my sister, my brother and me. On our way home, Michael had arranged for us to swing by Mark and Brook's house for a cocktail (Michael car pools with Mark). We didn't get there until the expected 8:00 and were so surprised at all of their work. The two kids were adorable, their rooms sparkling, appetizers, pasta and a pie along with cocktails were waiting for us. We stayed an hour. This young couple has been married for seven years, worked hard to create a beautiful home and gardens and have two adorable children. Very focused. Very driven. Extremely nice.

I think I talked non-stop yesterday. It began with the Medicare problem. My hospital stay in September still has not been paid due to the Worker's Comp Medicare Set Aside. The problem is the Set Aside is very specific to what it is to cover and a hospital stay in not on the list. I phoned the collector, they sent me to Medicare. Again, I love talking with Medicare. They are the kindness people.

Well, Joy and I had a chat. She started off being a bit brusk and said she needed to take a moment to read the file. There was a bit of silence and I said, "Can you smell this where you are? I am cooking bacon and it smells divine." All the sudden I heard, "Bacon. I love bacon." Then she asked, "Why are you cooking bacon?" I told her Michael needs protein in the morning and I was baking a whole pound of peppered bacon. She moaned. We both started laughing.

She then asked about our little town, the prices of rental properties and the weather. She was in Arizona, which is beautiful except if it is summer. It is tooooo hot. Then she told me she figured out my problem: The coding number of my diagnosis on the hospital bill was the same as on the Set Aside. The computer will kick it back every time. She said to call my university hospital and tell them to change the diagnostic code on the bill, resubmit it and it will be paid. She also said there is a second code that also should not be on the bill and gave me both code numbers. Amazing.

I called the woman who sent me the email about the second denial of the bill the day before and told her what I discovered. Done. Thank you, dear Joy.

Then, I climbed back into bed and slept for almost two hours. I woke up stupid! It took a bit to get going. After dressing and flying into town for a few things, I chatted an hour with Anna then an hour with Mary then it was time to meet Michael at his work for the shopping to begin. It was a really fun day.

Fun Tonight

Our dear friend Randy dropped by last evening and stayed until I had to leave for orchestra rehearsal. It was so great to spend some time with him. Sadly, he needed to share the news that another old friend died suddenly of a heart attack while running errands last weekend. He was only 55-years old. His dad owned a pizza restaurant in town and he was part of the group of guys who hung out at our house when they were in their late teens and early 20s. So very sad.

It was a very focused and long orchestra rehearsal last night. Michael and I talked after I got home so we didn't climb into bed until well after 10:30. That was very late for me. So, I am not going to rehab later this morning but instead, I am going back to bed. It is going to be another late night tonight. Managing stamina. We are going Christmas shopping followed by a quick visit with the family of Michael's car pool work mate. I am going to need all the energy I can get!

But, my work this morning will be to make endless phone calls. I got an email last evening regarding my Worker's Comp Medicare Set Aside account. Medicare still wants to use that money to pay for last September's hospital visit when the agreement specifically lists what it covers and a hospital stay is not on that list. On the phone, I ask for names, take notes and kill them with kindness. It is frustrating and I am sure it is going to get worse soon.

My mom is feeling so much better and is not contagious as of tomorrow. We will be spending the day together. It will be a non-stop gabfest!

New PFF Registry Announced

At the ILD Support Group meeting yesterday, there were five members present who have received lung transplants. It was heartening to see them all doing so well. The beautiful Susan has begun the transplant process and was sick of feeling so sick. As a very self sufficient, independent, strong woman, she hated being tethered to supplemental oxygen. We did have a lovely lunch and a great chat before the meeting.

Sally told us about the recent Pulmonary Fibrosis Foundation's (PFF) conference and about the famous Dr. Beall. He is the genus behind major research, buying orphan drugs, buying and selling pharmacies and fundraising for the Cystic Fibrosis Foundation.  The prognosis for a patient with CF went from 5 years to 49 years due to his efforts. One of his brilliant ideas was to develop a registry to input variables and to analyze the data. An example of what was discovered with this method was that CF kids used to have summer camps together and lots of meet and greets. They realized that they would become ill afterwards, discovered that they carry a bad bacteria that they passed to other CF kids, so now the goal is to keep them in separate classrooms, separate waiting rooms, each examination room must be wiped down between patients, that sort of thing. All of this was discovered because of the data in the registry. Here is the CF Foundation web site: http://www.cff.org/aboutcffoundation/presidentmessage/

Dr. Beall was invited to speak at the conference because of this successful process and PFF is beginning to follow his examples. It was announced at the conference that PFF will be beginning a patient registry at a number of hospitals in the US beginning in 2014. Information about the registry is below. If you wish to read more about PFF, their web site is: http://www.pulmonaryfibrosis.org/

PFF PATIENT REGISTRY

WHAT IS THE PFF PATIENT REGISTRY?

The PFF Patient Registry is an online database of “de-identified” patient information that will be managed by an independent Data Coordinating Center (DCC). The registry data will be available to all qualified investigators. The Registry will provide access to accurate, validated, and standardized patient information. A patient registry can provide important information for physicians and researchers that will enable them to better understand the disease and develop more effective therapies.

Where is the information in the PFF Patient Registry collected?

Patients can enroll in the Registry at designated PFF Care Centers. This helps to ensure that patients are accurately diagnosed and that their information will be collected in a standard manner.

What kind of data is collected?
Data in the Registry will include:

• Demographics (e.g., age, sex, race)
• Medical history
• Treatment history
• Co-morbidities
• Physical exam findings
• Test results: pulmonary function, six-minute walk test, laboratory tests, bronchoscopy, HRCT, pathology, cardiac tests
• Quality of life questionnaires
• Hospitalization history
• Diagnosis

What does the data tell researchers?

Data can help researchers make new observations about who gets a disease and why. In a similar way, data can also help health care providers assess the effectiveness of specific interventions including pulmonary rehabilitation, nutritional counseling, and new medications.

Some of the questions the PFF Patient Registry will help answer are:

• What is the frequency of a specific diagnosis by geographic region?
• Does the natural history vary by geographic region?
• What are the benefits and risks of specific interventions (e.g., bronchoscopy, pulmonary rehabilitation, lung biopsy, medications, etc.)?
• How uniformly are patient care guidelines followed?
• Validation of quality of life questionnaires and patient reported outcomes.
• Assessment of an intervention or medication on an individual's quality of life.

How will the PFF Patient Registry benefit patients?

Develop "Best Practices" for Patient Care
The PFF Patient Registry will help the Care Centers develop treatment protocols for managing PF patients. Registry data will allow Care Centers to assess current practices, patterns, and eventually determine what are evidence-based "best practices."

Collect Accurate Patient Information and Clinical Data
Over time the PFF Patient Registry will become the largest collection of PF patient data in the world. Importantly, data will be collected in a standard fashion at all sites. This will ensure that accurate and meaningful results are obtained when the data are analyzed.

Facilitate Clinical Trial Enrollment
Clinical trials help prove to regulators that a drug or medical device is beneficial to patients and that the benefits outweigh the risks. Therefore, it is important that companies test the drug or device on the types of patients the product is meant to benefit. Finding a population of patients who meet the trial criteria can be a difficult task, especially for those who work with rare disease. The PFF Patient Registry will help facilitate enrollment in and expedite completion of clinical trials.

Where can I find PFF Patient Registry sites?
PFF Patient Registry sites are located at the following Care Centers:

• University of California, San Francisco
• University of Chicago
• University of Louisville
• University of Michigan
• National Jewish Health
• University of Pittsburgh
• Vanderbilt University
• University of Washington
• Yale University

How is the PFF Patient Registry funded?
The PFF Patient Registry is funded through the generous support of corporations, trusts, foundations, and individuals who realize that the creation of a registry is a fundamental to improving the lives of those affected by PF.

For more information, call 888.733.6741 or +1 312.587.9272 from outside of the US.

Spirit of the Season

It was an unusual day for me to not leave the house yesterday - except for two runs to Safeway. Since mom was not feeling well, I stayed home and cooked two pans of baklava for gifts, wrapped Mary's presents, cooked dinner, cooked chicken and mango chicken sausages for breakfasts and a pound of sugar glazed walnuts for my mom when I see her on Friday. She is going to need a bit of goodness. Thankfully, she saw a doctor soon enough as she was headed for pneumonia again. All this kitchen work took just over four hours. It was so satisfying.

I did my weekly food shopping at Safeway but didn't realize that I forgot the honey to pour onto the baklava just after it comes out of the oven until I put the first pan in to bake. Quickly, I flew back into town, grabbed the honey and prayed that the car would not break down, there would be no accident to close the highway or any other issue that would prevent me from being home when the baklava was ready to come out of the oven. I made it! Both pans were cut and placed into four shipping tins this morning for my brother, Mary, Anna and the people at Michael's work.

Today is going to be fun. After dragging all the gifts to the UPS store, I am going to the city to meet with the beautiful Susan for lunch before our ILD Support Group meeting, which will feature a cookie exchange. I bought some special cookies and will not be bringing any home with me. We don't want them in the house to tempt us nor do I want to eat anything made by non-professionals. I don't want to share germs. It will be fun to see everyone as I haven't been to a meeting in several months.

It is so cold here, I find myself coughing when I breath that chilled air. My saturation rates are lower than usual. I am trying to be mindful of it, walking a bit slower, not talking while walking, breathing through my nose and out my mouth. We both slept really well last night and woke up about an hour later than usual. Michael just flew out the door to work looking like the Michelin Man, clothed in layers beginning with thermal underwear! I will be in my new festive heavy red sweater and new grey cords. The cold makes me feel like the holidays and it was fun to watch a DVD of White Christmas while cooking yesterday. I am beginning to feel the spirit of the season.

Baking, Mailing, Worrying

It was a lovely but cold weekend. Sunday, the Christmas lights were hung along the gutters and on the bushes next to the garage door. Michael also hung a beautiful array over the front door. Lots of lights. We ran out to get some lunch but other than that, we stayed warm inside and watched football!

The week begins. All plans for today changed after an early morning phone call from mom. She has a bad cough and is going to immediate care this morning. I am now staying home to bake baklava for my brother, Mary and Anna (Michael's mom and sister). Also on the to-do list: food shopping for the week, making a good dinner for tonight, wrapping all of Mary's presents and mailing everything. It will be a push.

There is a bit of drama going on with Mary. She has been renting a room at her sister's Patty's home since Michael's brother died last January. Suddenly, a $500 check Patty has been receiving every month from her deceased boyfriend's wife that was part of his estate (she is now 90-year old and they had never divorced) may be coming to an end. Patty is meeting with the son on December 30th. If the payments end, she told Mary that the $500 was going to have to come from Mary's children because they have money. Never mind that two of the three of us have children in college and that I am disabled and Michael is not working for fun. Nasty. Michael is phoning Anna this morning to talk about it. We would rather pay her money for Mary living with her (which is the longterm plan) than to give a dime to Patty because we know it will soon be something else. The $500 will only be the beginning.

I didn't sleep well last night.

Dinner Recap

 Dinner was relaxed and perfect. Susan and Randy really enjoyed themselves and stayed until 11:30! That was even more shocking knowing that Susan had driving up from LA at dawn Saturday morning. She must have been exhausted. We took these photos of the house lit with Christmas trees and lights before they came.

With the weather dropping into the 30s, Michael and Randy braced themselves against the cold to BBQ the beautiful rib eye steaks. Our guests loved the dinner and we served the cake and champagne at the fireside in the living room. I am tired this morning but I think it is due to going to bed so late, though I slept until 7:30AM.

Last night was the first time we have had friends for dinner in a long time. I was worried that I might not have the stamina to get the house ready, do the gardens, prepare the food and entertain. This was a test. I did manage my time well, was not at all overextended yesterday so only time will tell if I recover quickly from all the fun. My next focus will be to prepare menus and Christmas treats for William's arrival on the 19th.

Michael is going to hang the outdoor Christmas lights today so our decorating festivities will be done.

Here we go into the hustle and bustle of the holidays. There is so much more to do: presents to buy and wrap, food to prepare to give as gifts, clean the guest bedrooms. I am making my list and checking it twice!

Managing Stamina

We haven't had friends to our home for dinner in a long time. I love entertaining, cooking and being with people but I always worry about my stamina. It is still not totally back after my bout of pneumonia in September, so I have to be smart. Susan and Randy are coming tonight and I am ready. It took only four hours yesterday to cook the Pancetta and Porcini Potato Gratin, the Praline covered Chocolate Cake, iron a few things, clean the kitchen, make dinner for us and wash the wine glasses. I fell into bed!

Since it rained last evening, I am going to wash the windows and pick up the yard this morning, though the grass is too wet to cut. After a quick run into town, I am going to do nothing but take a nap this afternoon before jumping into the shower. Simple appetizers are the only things I have to put together just before they arrive.

The true test of how I managed preparing for this event will be tomorrow morning. If I am exhausted, I know I just can't do this sort of thing for awhile.

My mom. She is having post traumatic stress. While driving her Mini Cooper to Safeway earlier in the week, the floor mat shifted forward covering the pedals, she kept hitting the gas instead of the break, tore around a corner at a terrific speed and she finally got it to stop. She was shaken. No one was injured. No cars were hit. She was very lucky. She was afraid to drive. I gave her a pep talk yesterday, removed the mat and told her to drive the back way to the mall, just three blocks away, to get her confidence back. No phone call from her so she must have been fine.

Grateful for Crazy Day Ahead

It was so cold yesterday that my windshield wiper fluid was frozen. Wait, we are in California. We are on the ocean. This just does not happen! It was cold all day long, lots of black ice on the roadways and rather made me remember my youth in Chicago! Okay, it wasn't that cold...

I hit the stores and bought Michael's mom her presents, found some cute espresso cups for one of our presents from mom, had to buy a small Christmas tree made with heavy paper with music printed on it for my sister and found the most adorable "Dancer" ornament for my niece.

Sherman was at rehab just waiting for me and we had a long chat before class. Lots of new people have joined but Sherman and I were trying to think of all the people who have not been to class in months. Most had medical issues and, sadly, passed away. There has been a huge change over of people from just a year ago. We were happy that we were still standing and present!

Today is going to be a crazy day. Within minutes, I need to hit the road for the other rehab then to the butcher to buy the rib-eye steaks for the company tomorrow. I'll see mom for a couple of hours then fly home to make the pancetta and porcini mushroom potato gratin and the praline-covered chocolate cake for tomorrow night. The napkins need to be ironed along with a few of Michael's shirts, the wine glasses need to cleaned and then I will make a nice dinner for us for tonight. Michael is still having problems eating, is in far less pain but still uncomfortable.

I love these days. They fly by and I feel so satisfied when I climb into bed at the end of the day. Grateful that I am able to do everything I want to do. So very grateful.

Season's Shopping Begins!

Let the shopping begin! Today is all for Mary, my wonderful mother-in-law. We all chipped in to give her a Notebook and wireless printer for Christmas but she needs so much more. Macy's is having a crazy sale, so I am heading there this morning to buy t-shirts, a bathrobe and a nice jogging suit. She is still struggling with her eczema and psoriasis but is finally well enough for real clothing instead of pajamas. I am throwing in a pan of baklava for her as an extra treat.

Afterwards, I have the pulmonary rehab class.

Michael is still in pain. I spoke with the dentist yesterday, we added Tylenol to the Motrin and that really helped. He no longer is taking the painkillers.

The house is almost ready for Saturday's company. The eight poinsettia were purchased, watered and set in their spots throughout the house. It now looks so much like Christmas! Mom and I went for a ride along the coastside, into the harbor area, behind the airport and up into the hills to show her the house Natalie is bidding on this week. The ocean was a deep blue and flat. No surf. There was a hard frost last night, which is very rare for us here on the coast. It is 39 degrees here at the moment and going up to 52 today. I am waiting for the sun to rise to see if my little plants made it through the night.

William has a big concert just across the bay in a huge arena but we will not be seeing him. It is one of those radio station Christmas concert featuring a lot of bands. Too many people! So hope all goes well.

Pit Bull Nurses

I am irritated. A woman, who has become a dear friend, first contacted me years ago through this blog regarding her husband's ILD. She learned about ILD Clinics, contacted one in their area and they discovered he had be misdiagnosed. He actually had Hypersensitivity Pneumonitis. Why is that important? It is rare that an ILD responds to prednisone therapy, which is why there is a much longer prognosis with HP than other ILDs.

Ten years. That is how long I have been living with HP. Dr. K. recently told me to stay well and fit and I can probably go another five years before lung transplants. She also feels I can go a good ten years post-transplant. I will be 70-years old! I did not expect to live to 60!

Back to my friend: Her husband became short of breath climbing stairs at work. They tested him at home, ran four flights of stairs and measured his O2 saturation rate at 93 percent. Not bad. Before prednisone therapy at the beginning of his journey, he would have measured 77 percent doing this same exercise. He phoned the doctor to report the shortness of breath and hit a wall. A nurse. A pit bull nurse. "Take albuterol." Now, that has NEVER helped me. Ever. I was told to throw it away as it usually does not help ILD patients. She told him that his latest CT Scan was clear. But what has me irritated was when my friend phoned the nurse to discuss the CT scan and the possibility of some minor infection causing the shortness of breath:

" we also discussed his overall outcome. She (the nurse) felt he would live beyond 3-5 years."

How dare she tell anyone such information. Who is she to give that information? Yes, the prognosis for IPF is not good and is the 2-5 year realm but he has HP! Because there is treatment, the prognosis is so much longer! My friend was shocked. And shaken.

If I was not feeling well and had an increase with shortness of breath, I would phone Dr. K. and she would give me a quick run of antibiotic as I probably would have a minor infection.

The nurse told him that he was fine.

Irritated.

On the Mend and Decorated

Michael's tooth is still sore but he is not in pain anymore. The dentist told him it will take a couple of days to be completely pain free. We slept last night, at last.

About 3PM yesterday, I began thinking about the housekeepers due on Thursday morning and dinner guest who are expected to arrive on Saturday, it occurred to me to be prudent and get the Christmas decorations out of the attic. So, I began working while Michael supervised. Three hours later, the inside of the house was almost finished (I will buy nine poinsettias on Wednesday) and two Christmas trees are fully trimmed. The outside window boxes should be finished today but the outside lights will take a few days until Michael is up to the task. It still doesn't feel like Christmas. It was in the 70s but a cold freeze is coming Thursday. Maybe that will help put me into the spirit of the season.

I met Natalie and her family on Saturday (including her father who is on chemo for cancer at the moment) to look at a house they will be placing an offer on this week. Their two bedroom/two bath townhouse has been wonderful but they have outgrown it. This house had five bedrooms and four bathrooms. Massive. Ocean views. I hope it all works out for them. Winnie turns seven-years old in a few days. For the occasion, I bought the series of "Little House on the Prairie," the cookbook featuring  all of the food in the books and an apron. She is such a cook, I am sure she will love it all.

Nespresso. I must admit that we are really enjoying having a decaf espresso after dinner. I feel like an adult! With Michael not able to deal with hot coffee at the moment, this morning I enjoyed a large espresso instead of making a French press pot of coffee. So very delicious.

Pain To End Today

Crash! Did you hear that? That noise was my plan for today being tossed aside. Michael was in so much pain, it was another hard night. I will be phoning the dentist at 8:00 this morning ask what time the dentist can see him. An abscess on his tooth is the culprit. He is one tough guy but this is very painful, even with pain medication. This is the man whose appendix burst five days before he saw a doctor when he was 17-years old. He can take pain but this...is rough.

My sister's husband is having a MRI on his neck today to determine what is causing this cold and heavy arms. We are hoping it is a pinched nerve but in reality, he is probably going to need major surgery again.

In the good news department, we just received a confirmation of William's arrival on December 19th. That will give us plenty of time to spend together before the holiday. I am one happy mother.

Also, I am feeling pretty good. After working out at the other rehab yesterday, we ran a few errands and came home so Michael could just sit in his chair and be quiet. Even talking was painful for him. We ordered some presents on Amazon, I made a dinner of Chicken Sate and just rested.

Dull, I know. Sorry.

Let the Season Begin

Michael's still in pain. The dentist wanted to knock down the infection before he opened it up on Monday, so he prescribed a run of antibiotics, Motrin and some lovely painkillers. Strong painkillers. He is a bit goofy, not able to drive and drifts on and off. He needs to paint something for a friend today so I am going to drive him there, work out at the other rehab then treat him to lunch.

I was rather relieved that no one was sneezing or ill at Thanksgiving. Dodged another bullet. I think the mild Fall has helped to keep the flu at bay. We remember to wash our hands when we arrive home and use the sanitizing gel everytime we get into the car after being in a store or bank or supermarket. It has become a good habit.

We spoke with William on Thanksgiving. His contribution to the dinner was making waffles with the flavors and ingredients of stuffing. Rather brilliant. He said it was delicious. Ever since his second year of college, he has not been home for Thanksgiving. It was a lot of difficult traveling for a dinner. We are looking forward to the time he will be with us at Christmas.

The Christmas Season. I already have the radio in the car set to the station playing holiday music 24/7. The DVDs will begin this week with Home Alone, Love Actually and White Christmas. Here we go.