Memories

I dropped in at the cafe to visit our former neighbor, who I had not seen in over twenty years. She looked at me then broke into a huge smile. We hugged then sat, chatted and got caught up on our children and her grandchildren and even her great-grandchild. So many memories of our time together when Michael and I were newly married. She lives about 90-minutes north of us and I have promised that we would drive up for a visit in 2017. It would be marvelous to see her children.

My numbers in rehab were pretty good, a little coughing, but nothing awful. Sherman did not show up but I phoned him to break the news of Caveman's sudden death. He was as shocked and I had been. Unbelievable. I did encourage him to come to class next week as I heard he was struggling with a bit of depression due to his breathing issues. Being around the bunch of us should lift his spirits.

Since I am so careful with my diet, we rarely go out to dinner. We like to have a nice lunch out once in a while as it usually offers smaller portions and I can digest it all not having to go right to bed afterwards. Last night, Randy T. met us at the fish taco place and we had a lovely, delicious and interesting two-hour dinner. We felt like such adults and were amazing at all the Christmas lights as we drove home. We had not been out and about in the evenings before Christmas!

Mom and I will be hanging out today. No doctors. Nothing on the calendar so that means some shopping and lunch! Just being together.

Lots of Shakin'

Lots of earthquakes surrounding us! So far, we have not felt one. We live on the West side of the San Andreas fault, the part that is supposed to break off from the mainland one day and be carried north by the currents in, oh, several million years. We are on bedrock and high enough that a tsunami should not be a problem. I hope.

Christmas will go back into its containers in the attic this weekend. It was a good one and I will be sad to see it go. Yesterday, I wrote and sent photos of the day to the woman at my rehab class and her friend in Norway. The friend had written specifics of how they celebrate Christmas in Norway and was thrilled that I was interested in her opinion. After seeing the photos, she emailed that our day looked just like their celebration - decorations and food! I did it! An authentic experience.

We have been invited out to dinner tonight. A friend of Michael's (a legion in the Rock-n-Roll art world) wants to celebrate the coming of the new year with us. He is always interesting, the conversation is always challenging and it has been a long time since I have seen him.

But, later this morning, I hope to meet Sherman at the rehab class. If he is not there, I will phone him about the passing of Caveman. Still bothers me.

My breathing is not great and I hope I am not getting pneumonia. I was very short of breath last evening but I have been mindful of taking my inhaler more often. If the coughing becomes worse, I will contact Dr. K. or go to the ER.

Surprise Passing

It was so great to see everyone and to have a good workout at the rehab class yesterday. My numbers were surprisingly fantastic - 96-97 saturation rates. I usually fight for 92-93. It felt great, I was never short of breath and I had wonderful conversations that I just didn't want to leave.

As I was waiting to checkout, Sara (RN) sat next to me and said, "I have some bad news. We just got word that Don died." Don. Don. I couldn't place his name with his face. Then it hit me. OMG! Sherman had nicknamed him Caveman! He had only retired and been with us less than a year. I had been asked to work with him but found him rather strange then he stepped over a line and I backed way off. But before that, I had tried to have him go to my university hospital because he didn't have a proper diagnosis and he was just seeing a local doctor. He said he loved his doctor and didn't care about a proper diagnosis. Well, he died of pneumonia. I believe he was around 65-years old.

Sherman is also struggling but told me that he would try to get to the rehab class on Thursday. He is also dealing with a bit of depression because of his current difficulty with breathing right now. I don't want to tell him about Caveman over the phone but will wait until I see him in person.

Michael and I are slowly taking the house back from the holiday. He dumped all the poinsettias yesterday as they were on their last leg. The housekeepers are due tomorrow so we are trying to gather as much of the holiday stuff in one room so the rest of the house can be cleaned. It needs it!

This morning, we are going over the pass to food shop then home to visit Safeway. Michael will haul it all into the house for me. I exchanged a present from Barnes and Noble for a new Atkins Cookbook yesterday. We will be trying new recipes from it all week.

Post Holiday

We were in full recovery mode yesterday and even had a two-hour nap in the afternoon. We ate lightly and slowly picked up the house. It felt like we were hibernating.

I did phone Sherman yesterday only to discover he had been in the hospital. His breathing had really become difficult and the doctor told him that if it got worse, he was to go to the larger hospital to be intubated. YIKES. He said he considered that life support and wanted nothing to do with it. I am fearful that he is really failing. He won't be at the rehab class today but was going to try to make it on Thursday.

My own breathing has not been great and I have been coughing. I realized last evening that I had not been using my inhaler at all during Christmas or yesterday. Dumb! It really helps to keep everything open and moving and I believe it helps prevent pneumonia. I used it last evening and felt so much better. My chest wasn't so tight.

The goal today is to buy vitamins at Costco before the class, make a food shopping list for tomorrow and pay some bills. Back to life.

2016 Christmas

What a day! It all came off really well. Everyone was happy and relaxed and chatting. Mom was able to spend time with her other daughter and her only granddaughter. The food was a total success. Our Norwegian Christmas celebration will go down in history as one of the best ever. My favorite? The liver open-faced sandwich with sweet pickles at lunch and the ribs at dinner. We sent leftovers home with Shelley and Russ but we still have enough for dinner tonight.

I am done. I needed oxygen all day and my sister and her husband did all the dishes after dinner, and there were a lot of dishes. I had been on my feet all day and really felt every muscle. They all took off around 9:00 so I rode in the back seat to drop mom off at her home.

It was a wonderful day, though we missed William. Here are some photos!

My sister and her daughter

Stuffed Pork Loin (apricots, prunes, apples), Baby Bak Ribs, Roasted  Carrots
Braised Red Cabbage and Mashed Potatoes

Merry Christmas

Here we go! Ready or not! A very Merry Christmas to you! Thank you for sharing a rather rough health year with me. 2017 should be interesting as I either join a drug study or continue to slide into lung transplants.

But for today, I will have my dearest husband by my side all day. He watches me and notices when I need a bit of help and is always positive and kind. We are blessed to still have my mom with us, to share this time of our lives together. My sister and her family is full of new changes in the coming year. Her daughter is getting married in April and my sister has already incorporated the husband-to-be's family into their lives. It is all good.

William will be greatly missed today. We will talk but I am counting the days until we see him in February.

The food is ready except for a few things, Michael will go over the pass to pick up my mom and we will have a fun Norwegian Christmas. Photos will be posted soon!

Yesterday, all the neighbors came by to share homemade goodies. Some stayed for a cocktail with Michael, others just chatted a bit. It was so much fun and we are so blessed to be surrounded by such positive, good people.

And finally, I was drifting off to sleep in bed last night when the doorbell rang around 8:30PM. Suddenly, I heard violins and Christmas carols with singers! The wonderful woman we played with at the goat farm had arrived with Leslie and about eight other musicians and were serenading us. I climbed out of bed, threw on a robe, had my oxygen on and almost cried. What a gift. It was so unexpected and simply a marvelous surprise. They were then heading to Tim's house north of us to surprise him. What good people.

2016 Christmas Eve

British Don arrived mid-afternoon and it really made my day. He loved all the Christmas decorations, we opened a bottle of champagne to celebrate his new title as grandad, we sat in the living room and chatted for a couple of hours. He showed us a photo of his new 9+ pound grandson, who looked EXACTLY like him! It was unbelievable!

Earlier in the morning, I dusted, cleaned the floors and vacuumed so the house is in good shape. I will hit the rugs one more time later this evening. At 9:30, I began putting the bar table together, which included washing the glasses. The real work began when I made eight pounds of spicy nuts as our homemade treat to the neighbor this year. Sometime today, they all will drop over or we will take our goodies to them for the exchange. It is so nice to see each other's houses and kids and families from out of town. I so love our little cul-de-sac.

Making the nuts took several hours then I made the Scotch Eggs, which Don ate TWO of quickly after his arrival, as they just had come out of the oven. I was tired from standing all day. I was just tire. But, today is the really big day. Michael is going to run over the pass for an hour then come home to help me cook. I have ten items on my list. If I can pull this off today, I will only have to reheat everything and only have to cook the roast. It will make my life doable tomorrow. I predict that it is going to take between seven to eight hours to get everything prepared and in the refrigerator.

Happy Christmas Eve. I have a feeling so many people are also in their kitchens today or traveling or just enjoying the day with family.

Kransekake

A couple of photos: First photo is Tim warming up at the Irish Fiddling goat farm gig on Wednesday evening. The goats were fascinated!

And here is just a peek of the centerpiece of our dinner. It is a Kransekake. Almond paste rings of pastry in the form of a Christmas tree with several Norwegian flags and Christmas decorations. 

We started our day at Safeway for the majority of items. Michael hauled it all in while I put things away. A team. We then headed to the organic market to get pumpernickel bread and grenadine for the Norwegian cocktail. Over the pass! I delivered gifts to the RNs at the rehab class before we picked up the meat at the butcher's. No lines! We were so early we beat everyone to the punch! Then, Trader Joe's for the nuts, produce and cheeses. With all the important items on ice, we drove to the bakery on the Avenue to pick up the cake and cookies. By noon, we were home, unpacked and looking for lunch. We celebrated our hard work with lunch at the place I took mom last week. Michael even had a chocolate malted! Last evening, Rick and Natalie had us over to their house for a nice get together. A lovely way to end a busy day!

Ah, but today? Floors and carpets need attention, the bar table will be set up, the spicy nuts will be made for our annual exchange of homemade goodies with the neighbors and British Don is due for a visit around 2PM. He became a grandfather yesterday! A grandson, Wyatt! The champagne is cold and ready. 

It Begins

We played for the goat farm late yesterday afternoon. It had been very windy and a bit cool but magic happened. We arrived and the winds stopped. We played near the appetizers in the little garden. While warming up, I noticed that the goats in the pen at the end of the garden were pressed along the fence NOT MOVING AN INCH but listening to the music. It was hilarious.

About lucky 20 people arrived for a dinner in the Medieval-Type dining room for a long evening of a meal made from all local products. These were hard-won reservations, which they made over a year ago. Expensive, too! As the owner of the goat farm welcomed them, she said this once-a-year tour and dinner made a huge different to their operation and thanked them for coming from such long distances.

We played well. It was a beautiful venue and I even bought some goat cheese for our Christmas meal.

Today, it begins. We are going to hunt and gather all the groceries today. It should take many hours. Tonight, we have been invited to Rick and Natalie's for appetizers (dinner).

Here we go.

Christmas Photos

Boy, do I have some photos for you! We did work in the gardens in the morning then had a quick lunch before I set the table. I am happy with how it turned out. Yes, those are the old Norwegian cross country skis in the corner! The linens are over 100 years old but the new napkins look so cute and Norwegian! Note the place settings. The center piece will be the 9-ring cake shaped like a Christmas tree with lots of Norwegian flags and Christmas decorations proudly on display. 

Cute decorations in the family room and if you look up in the Christmas tree photo below, you will see one of the Norwegian flags Chip and Betty made attached to the front entry light.

When I was head of the music program, we taught the students the music from Edvard Grieg's "Peer Gynt"with its fun "In the Hall of Mountain Kings." It is a song about naughty Peer Gynt falling into a cave, surrounded by Trolls and, due to a well-timed earthquake, he was able to escape with his life. Trolls. A tradition in Norway. I somehow had to add them to the celebration, so mom found some marshmallow trolls that I will place on each plate along with the traditional hearts that Chip and Betty made. We have boy and girl trolls. 

Into the Garden!

G-day today. Gardening. It is so windy that all we will be able to do is cut, edge and blow. We can't wash the windows because a storm is going to come in before Christmas. We are focused and ready to hit the yards by 9AM with a goal to be finished by lunchtime. Maybe later today, I will set the table, take some photos then cover it to keep it dust free until Sunday. Look for photos tomorrow! I hope!

This evening, a larger group of Irish music performers are meeting at Leslie's house for a bit of a leftovers party and playing some music from 6-8PM. Since I already have a blister on my picking finger, I will tape it up so it will be ready for our performance at the goat farm on Wednesday.

We almost finished our shopping yesterday after Michael met us at Nordstrom for lunch. His are wrapped and under the tree. Mine? I still have $40.00 to spend. Don't know where. Don't know when!

It Begins

And so it begins today. The List is out on the counter and everyday it will be used as our reminder of all the little things that need to be completed for Christmas! Today, we will drive over the pass together and Michael will drop me off at my mom's home. She and I will do some Christmas shopping together then have a nice lunch. Michael will swing by for a quick visit before he and I finish our Christmas shopping then head home.

I so hope I am finished shopping by the end of today. Let the wrapping begin!

The Menu for Christmas Day is below:

One Week Away

The sky is just beginning to be the background for the black branches of the trees and the large hills behind us. I love this time of day. The house is quiet and the Christmas lights are on. Michael is still in bed, a rare event. He usually is the first one of us up and moving in the morning. But, he had a Boys Night Out at Mark's house last night, just a mile away. Thankfully, Wayne's son arrived to drive them all home around 1AM. He was "happy" when he climbed into bed.

I always love seeing older men hanging out and talking together. We women can connect even in lines of the grocery stores. But, men? Not as open. It is good for him to hang out with the younger crowd and some dear older friends. It was literally freezing last night but he had about five layers of clothing as he knew they would eventually end up outside. It was in a smaller house but with large outdoor spaces with beautiful gardens.

We are planning to finish our Christmas shopping today. Lunch will be enjoyed together. I know I will being hearing stories all day about things that happened last night.

I just heard some creaking of the floors in the hallway. Here he comes. Slowly. Coffee is being made. We might be out in the world a bit later than we had planned!

The week ahead is going to be a whirlwind. The only bad news is that William will not be with us on Christmas. He has a major staph infection and is on antibiotics for three weeks. Too much travel. Immune system depleted. My mother's heart wants to fly up and make him Chicken Noodle Soup. He told us he would be down in February. I will be counting the days.

A Busy Day Off

My mom is very careful about the food she eats. At times in her life, she had an eating disorder and just could not eat. When she moved closer to me about five years ago, she was hardly eating at all. Times have changed. She had a dentist appointment in my coastal town yesterday afternoon so we had lunch at the little place we went to a couple of weeks ago. I had learned that they served malted milk shakes. She hadn't enjoyed one since she was 12-years old and suffering from having her braces tightened. We split an amazing pulled pork sandwich and I watched in utter awe as she finished off a large chocolate malted milkshake! It made going to the dentist afterwards a bit easier.

A huge storm blew through as we drove the pass and popped in and out of the car. We even stopped by the house so she could see all of our Christmas decorations.

Friday is usually our day together but we have seen each other Monday, Wednesday and Thursday this week. Today is a true day off for me. The carpets are going to be cleaned this afternoon but this morning, I am going to the store then the refrigerator is going to be cleaned, my lists updated, my paperwork filed, the kitchen cabinets wiped down and some presents to be wrapped. The weekend should be rather quiet as it is too wet to cut the grass. That is on the list for Tuesday. Somehow, we need to shop for Christmas presents!

And It Continues

The saga continues. When we got to mom's eye doctor, I had a message on my phone from my hospital regarding the $2,775.75 bill. Carolina asked me to phone a special number at Medicare and, from the lobby all alone, I was finally connected to a marvelous woman in the Coordination of Benefits and Recovery department. (It is here that I once again wish to mention how the most wonderful humans work at Medicare. She told me later in the conversation that she feels this was her life's work and she tries to treat each person like others treated her grandmother.)

My Worker's Comp lawsuit was settled in 2009 but I never really understood the Medicare Set-Aside. I have been waiting for Medicare to bill me. For the first time, this wonderful woman explain how mine was different from most (the money is under my control) and that I should have been having the university bill me directly for any of the covered charges.

What is covered? Quite a bit. I was surprised when I looked into the paperwork this morning. It must all be related to my lungs but here is the general list: Primary physician (never see my local doctor for my lungs), imaging studies, blood tests, pulmonary function tests.

The Medicare woman then told me to phone the university and ask them to separate out the bill and re-bill Medicare for the items not related. They should bill me directly for the other items.

Then, we got chatting. I explained that I never understood this and almost hoped I could just write a check to Medicare and be done with it! She paused and said, "Hang on a minute." She told me about a program that I can negotiate to give a lot of the money to Medicare but I would be able to keep a nice hunk of the money as it was part of my settlement. WHAT?!? After the money is gone, Medicare would pay for everything. She gave me the name and number of the persons who deals with this and I will give him a call to get the full information.

In other news: I saw Dr. K. yesterday. She was in a rare good mood and we talked jewelry! A personal conversation! Wow! I am stable, she will see me in six months but she told me several things: she believes I won't need 24/7 supplemental oxygen until 2018 unless I have exacerbations then all bets are off and we talked about the drug study in January. She looked it up, gave me the email address and told me not to give them any information other than I was interested in being in the study. I may not meet one of the prerequisites, such as prednisone, but we couldn't imagine any HP person in the study not on prednisone. She said I have a window of about six years before I hit the age limit for lung transplants and the new drugs couldn't hurt. It is a year study. When I got home, I sent the email to the head of the study.

Worries

Well, phone calls were made yesterday between my university hospital and Medicare regarding the $2,775.75 bill I received from the hospital. One said it was kicked back for more information and the other said it was not submitted. Lots of waiting on hold. Where we sit with the large bill is that Medicare said my Worker's Comp set aside was gone so I owed it. This came from my university hospital billing department. I told her that I still had $92,000 waiting for a bill from Medicare. With a set aside, specific things like oxygen, PFTs and CT Scan are approved and paid by Medicare then they are to bill me until the money runs out. I was told that once the money runs out, they would pick up any additional costs. This worries me now. Am I expected to pay for my own medical after this money is spent? OMG!

So, I worried all night. Then, I worried about getting our house into a trust and whether William was coming for Christmas. It brought out all my inner worries.

And then today, I face Dr. K. Okay, then.

But wait, I need to be out of the house within minutes to drive mom deep into the Silicon Valley during rush hour for her eye doctor appointment. This is the same appointment that we were a week too early last Wednesday.

Silicone Valley then San Francisco then home for an orchestra rehearsal. It is going to be one heck of a day. Did I mention it will be raining all day? People here don't drive in the rain very well so there are sure to be accidents and delays. I so hope I am not involved in any! More worries!

$2,775.75

Rehab class today! I need to run some errands beforehand but it should feel great to have good workout. It is difficult when the mail arrives in the early evening and there is a problem. A $2,775.75 problem. My heart started racing. Mail us a check or pay with a credit card online NOW.

It was from my university hospital and it was part of the billing from my first pre-lung transplant testing. The other three bills were paid but the one that included cardiology, clinic visit, lab work, pulmonary function tests, respiratory services for a grand total of
$16, 084.00 showed a balance due. Yes, you read that right. After discounts ($310) and insurance ($12,998.25) it stated that I owed $2,775.75. Merry Christmas.

So, after taking a deep breath, I phoned my insurance company that covers the gap between Medicare and my pocket book, Janice and I had a chat and she confirmed that the other three bills were paid but WAIT! They never received the bill that would cover the $2,775.75.

Now, it was too late to phone my university hospital so I worried about it all night. Then, I began to worry about other stuff. For example, I ordered my vitamins online on 11/28 then realized that I have not received them yet. Were they taken from our front porch? This morning, I looked at the confirmation of shipping email with tracking numbers and discovered they are due to be delivered today. One problem solved.

I am watching the clock waiting for the billing department at the hospital to open so I can call to let them know that they have to submit the bill to my insurance company. Fingers crossed that I don't discover a bigger problem.

Fumes

It's been rainy and cold, for us. No frost but we were actually wearing coats over sweaters. The weekend was quiet, though we did a lot in preparation for Christmas, including hanging the outdoor lights. One of the jobs was to set the self cleaning cycle on our oven. OMG! I had forgotten about the fumes.

I set the 3.5-hour cycle around 4:00 and, for the first hour, all was well. Then, we were in the living room when the burning odor hit my delicate lungs. We closed the doors to the kitchen. It got worse as the oven was doing its job of burning off at least a year's worth of gook. We looked at each other, Michael said I should leave and I coughed all the way back to our bedroom. With those doors shut, the windows opened (it was cold outside) and the fan on, it eventually was an odor-free space. With my oxygen on, I read then watched some TV but drifted off to sleep around 6:30. Suddenly, it was 7:30, I finished getting ready for bed then promptly fell asleep until 5AM.

There is still a bit of an aroma of something burning this morning but hopefully, that will dissipate as time passes today. Next time, I will ask Michael to turn on the cleaning cycle while I am not home. It was horrible and I had such a difficult time breathing for a while. Not good. Lesson learned.

Mom and I are together for an eye doctor appointment this morning. Everyday this week will be jammed packed as I work my way towards Christmas.

Bumping into Memories

Michael's EEG was normal, according to the tech but, we still have to wait to remove the medication until we hear from the neurologist. We both took a deep sigh of relief. We went to the mall, bought his mom's Christmas presents then stopped by his friend's store. His friend wasn't there but was on his way so we sat on a bench in the mall, like old people, and waited.

I saw her coming. Dr. A.J. She was a legion in the education world and we hadn't seen each other in probably close to twenty years. I called her name, she looked at me, I reminded her of my name and we embraced. Michael was introduced, his friend arrived at that moment and they left together. Dr. A.J. and I were alone.

She was the head of the school where I got sick back when I arrived in 1990. She and Karen, the owner of the school, were an amazing team who built a highly respected school for gifted children from the ground up. There was a huge problem in the 90s (we refer to it as "the divorce") and both Karen and Dr. A.J. were thrown off the Board and half of the parents left the school. Both of them went on to build an educational non-profit foundation and finally began another school with a totally different focus. They wooed me. They wanted me to design a very different music program but I was sick by then. I was not allowed to be around children anymore, due to the prednisone. I told them about Natalie and all the work she was doing at the school but, the timing wasn't right. She was having Winnie and it wasn't until after Oliver was over a year old that she contacted them for a job. They were thrilled that she was available and had ideas. She had lots of ideas about how to build a program based on the parent population and expectations. It was, after all, deep in the Silicon Valley.

After several years, Natalie has created such a modern, remarkable program that Dr. A.J. is taking her to present at a major conference next month. A really big deal.

It was with that background that we embraced. She asked how I was feeling. I told her about being an official pre-lung transplant patient. I also told her all about my work with newly diagnosed people, being on a board at my university hospital and giving speeches to groups. She asked what I felt were the secrets to my success of putting off lung transplants for so long. I replied that exercise and diet were the two major reasons. She confirmed that the studies she read agree with me. Hard exercise. Daily exercise. We spoke of issues of her health, photos of our children were exchanged and we spoke about Natalie. She told me that she, a woman who is the head of education at a local college, had never seen a teacher handle any child as well as Natalie. Even the most difficult of children. Yup. That's my Natalie. Always very clear with her instructions with not a hint of an aggressive or punitive tone. It was so satisfying for me to hear "from the horse's mouth" how well Natalie is doing. I am so proud of her and I know how hard she works.

We embraced and said our goodbyes but I know we will meet again.

I met Michael's friend in his store for the first time. He has a 2-year old and we started to talk education and I was back at the school again. I talked him into going on the tour of the school where I got sick and yes, it is horribly expensive but they have scholarships. Lots of scholarships.

I may have gotten sick there but I still love the school.

Didn't Happen

Well, yesterday didn't happen like I had planned. Sure, I got up and out of the house just fine. Even the rough traffic over the pass didn't stop me from arriving at mom's with more than enough time to get to her eye doctor appointment. Traffic on the freeway south was horrible but we finally arrived with 20 minutes to spare. We parked. We walked in. We entered the lobby to check in and BOOM. That's when it happened: I had all of the appointments for the day (including my doctor appointment with Dr. K), listed in my calendar a week early. Wrong day. All for nought. When I transferred all the appointments for the new year into my new calendar, I messed up.

We were now free! Mom needed a few things at the Dollar Tree then I dropped her off so she could get to her volunteer job. I went home. It was so nice to be home with nothing I HAD to do. We had leftover Lamb Kebob Tacos for dinner and I went to the orchestra rehearsal. Since I have missed so many rehearsals, I have been worried about the upcoming concert. We played the overture and a theme and variations on a Brahms theme by Beethoven. Both went really well. Then, The Symphony. It was rough but I held my own and actually feeling so much better about it all.

Michael has his EEG to check for brain seizures this morning and if none are found, as expected, he can quit his medication he has been taking for two years. We will go shopping for his mom's Christmas presents afterwards and maybe even a bit of lunch! Should be a nice day together.

Working Towards Saturday

I fell into bed exhausted last night. Today is going to be even more of a push. My focus is to make it to Saturday intact and well. Period. After mom's eye appointment today and I drop her off at her house so she can go to her volunteer job, I will head into the city. Rain is due about the time I will be driving home so it could get ugly. There will be enough time for dinner then I will try to dodge the raindrops while hauling my bass to the orchestra rehearsal. We are going to run the program from start to finish, in order. I love that. There are very few stop and starts and I can determine where I have problems.

As I made the bed this morning, my thoughts went to how it will feel to fall into it late tonight.

The highly respected woman and Leslie came for the rehearsal yesterday. She loved hearing the bass playing Irish music, which is a rare event in the area. She is an excellent musician who plays one of the large Irish drums, a mandolin and a violin. And the bonus is that she was very nice. We will meet again next week.

Our usual group of Irish Fiddlers met last night and I was really fading towards the end. We have a gig on Friday night and have included some rather difficult Christmas music and a new song into the mix. Michael walked the bass home and I went straight to bed.

I have lost my disability placard. I think it was near the passenger seat floor of the car when I dropped mom off on Monday and, somehow, it got kicked out of the car at her place. No one has turned it in so I am applying for a new one today. It takes four week! I hear I can use the paperwork to prove I have a placard but I worry that a parking cop may not accept it. Yikes.

Lots of Jigs!

Working out at the other rehab yesterday morning fueled more energy. I was able to do my routine before adding more to my Christmas meat order at the butcher's on my way to Trader Joe's. By the time I arrived at mom's house at 9:30, I felt like I had conquered all my chores so we enjoyed the day together. She needed to do some shopping and run a few errands then I suggested Chili's for lunch as it was nearby. We were not in our usual shopping area so it was a rare event, we were there early and had the perfect waitress. I even ate! Soup! A soft taco!

Sometimes, I like to drive through the neighborhoods and small roads on our way back to her home. She loves to look at all the houses in the area where I grew up and we even drove by our old house. It looked horrible! It hasn't be painted since 1969. The old paint was peeling off and the house just looked very sad. Still, it is probably worth well over $2M because of the neighborhood! California real estate! She loved driving through the big fancy houses and so many Christmas decorations were in full bloom.

We are going to be together again very early tomorrow morning as she has an appointment with her glaucoma doctor. Afterwards, she will be doing her volunteer stint at the large main library while I head to the city to visit Dr. K. I am underweight again and she is not going to be happy. She worries that I will go below the minimum of 25 BMI for lung transplants. I'm close. I love the way it feels to be lighter and have such loose clothing but, she is probably going to tell me to eat more!

Today, three people are coming for an Irish Fiddling rehearsal for a specific gig, which will include a rather respected woman in the Irish Fiddling world who asked us to play with her. It will be at our home for just an hour this afternoon. Then, this evening, our usual group will have a rehearsal at Leslie's next door. Fun day!

Visions of Sugar Plums

We did it. The tree is up and fantastic. It actually changes colors with the tap of a food switch. All of the poinsettias are not in place yet so other photos will come soon. But for now, here is the new tree and the family room lights. I have gone a bit nuts as there is now a wreath hanging on the guest bathroom door. The outdoor lights will be finished by tonight and Michael washed all the windows inside and out before cleaning all the screens yesterday. It was a lot of work!

The Norwegian Christmas theme is moving rapidly forward with matching plates, cloth and paper napkins. We have hung the flag that Chip and Betty made so I will also post that soon. I was so jazzed about everything that I couldn't sleep last night!

Working out everyday has brought back my high energy level. On Saturday, I worked over three hours in the back yard only. It is finished, trimmed and ready for Christmas, with only a quick cut of the grass before the special day. The front yard? Well, that is going to take more work.

Tomorrow, a group of three other Irish Fiddling musicians are coming to my house to practice for our gig at the goat farm south of town. Then, in the evening, I will meet others at Leslie's next door for our weekly rehearsal. She thought it would be easier on me if I didn't have to haul my bass to her house twice in one day!

But for today, I am dropping Michael off over the pass then I will drive to the other rehab for a good work out followed by a bit of food shopping before spending the rest of the day with mom. I'm exhausted thinking about it all! But, still exited. I love this time of year.

Michael vs Neurologist

Michael's meeting with the neurologist went really well. What a great doctor! He never even glanced at his computer but sat back in his chair and chatted. What he was actually doing was observing Michael to see if he found any problems with his memory or speech. Smart. He ordered an EGG scan of his brain on Thursday then, if all is fine, he will give the approval for Michael to stop the horrible anti-seizure drugs. We were so very happy! Fingers crossed for Thursday!

After the appointment, we went shopping! We found new Christmas lights! We found new decorations! We ordered the pork roast and baby back ribs for Christmas! We even ordered our dessert! We ordered a special Norwegian dessert of almond paste pastries made into the shape of a tree then decorated with flags and ornaments! Not cheap but it will be the crowning glory of the entire special Norwegian dinner this year. We also ordered special Norwegian gingerbread and almond macaroon cookies.

After working in the garden tomorrow, we plan to decorate the house inside and out. Christmas is a-comin'.

This morning, I am heading to the other rehab again. My energy level is growing so I just need to push myself to get up and out early. Mom and I need to have my glasses adjusted at Costco this morning then some other shopping for her. I promised that we would have lunch today at her favorite P.F. Chang.

Next week's schedule is unbelievable. Tons of appointments, rehearsals and doctors! I need to take just one day at a time!

Michael Given All Clear?

I was within thirty minutes of going to the orchestra rehearsal last night when I turned to Michael and said, "I just want to sleep." He said that I should listen to that and stay home. At 6:30, I went to bed and slept until 5AM when Michael climbed out of bed.

Guess I really needed the sleep.

I returned to the other rehab yesterday. It was so good to see so many old friends but there were so many people I had not met yet. It felt good to work out. I noticed an uptick in energy after I got home but clearly, it wiped me out.

This morning, Michael and I are going to his final appointment with the neurologist and he can finally be approved to quit his anti-seizure medication. Nasty drug. No one ever believed us that he passed out two years ago due to low blood sugar and not a seizure. There were no signs of any seizures, past or recent, in his MRI after the incident but no, they said that it was a seizure. To keep his drivers license, he had to be on this drug. We have been looking forward to this appointment and freedom from the drugs for a long time.

To add just a bit of drama this morning, we just got an alert that the pass is closed due to a fallen tree. The traffic will be incredible so we now have to build in a whole lot more time to make it to the doctor appointment on time. Nuts.

After the appointment, we will be shopping to find Christmas decorations at Lowe's and plan to order some special Norwegian cookies and goodies from a Scandinavian bakery.

Back to the Other Rehab

I have not been going to the other rehab. Mom has had a lot of early morning doctor appointments and I really haven't been feeling very well. At rehab class yesterday, Sara (RN) gave me the stink eye and a gentle nudge so I am heading over the pass early this morning to return to my former routine. I also told her I would see her there on Friday morning.

Sara also told me that my friends at the other rehab were really worried about me and asked her if I was okay. That was very sweet! So, this morning I am probably going to talk a lot more than my workout. It will be good to be back.

After the workout, I am running down the Peninsula to Home Goods to see if they have red napkins and some Christmas decorations. Michael and I will be also searching for STAX and other goodies tomorrow after his doctor's appointment.

My poor gardens are a mess. I quickly walk by the front yard and try not to look through the back windows. My goal Saturday is to cut the grass and begin to trim the plants for the holiday. The windows are also a mess so I will use my handy Windex Wand and, within minutes, have shining clean windows for a week or so. No rain predicted for a few days.

At the Irish Fiddling rehearsal last night, we practiced several Christmas songs and one had a special Irish twist. One person was a little freaked out, I just winged it and it was simple. No problem. The rest of the group was a bit frustrated by this person's constant freakout if the chords are exactly the way the music is written. Every stroke of a chord is needed in his music. If a chord is held for 4 measures and they are strumming it twice a measure, he has to write in each stroke of that chord. At a break, the head singer turned around to me and said, "I so love playing with you. You just do it." I said, "I'll tell you my secret. I'm old and have lots of experience. I can wing anything." He laughed and it lightened the mood.

It's Beethoven tonight. The orchestra has seven more rehearsal before the February concert. I still don't have a lot of it under my hand. I love when I get to the point where I don't need to count or even think but my fingers just go to the right notes. I can begin to play musically and not just playing the notes. That is where the magic happens. That is when I walk away from a concert feeling exhilarated. That is the goal. Not there yet.

Drugs vs Transplants

I haven't been to rehab class in over two weeks and today is the day to face the machines again. Treadmill! Bike! Wall weights! All my friends and waiting to put me through the paces. I'll bet I will feel full of energy after the class.

Before the class, I need to drop some of mom's Christmas decorations off at her home. While over the pass early, I might even begin to look for my special Christmas decorations at Michael's Crafts. It is nice to have time to wander and ponder. I may also pay a couple of bills while I am in the area.

I have an appointment with Dr. K. next week. After she does her business, I am going to ask her opinion about whether I should participate in the January study of the new anti-fibrotic drugs or let myself to continue my decline towards lung transplants. The issue is, if the drugs work, I make max out age-wise for transplants. Or, as one grows older, other issues may arise, which would then preclude me from transplants. She has so much experience with transplants and really understands how my body has been reacting to all the drugs through the years. Can my body handle the massive gastrointestinal problems for the first three months of these new drugs? Does she think these new drugs will work on my specific disease?

It should be an interesting conversation.

Christmas Tree

It's a beauty! All 7.5' of fake greenery and colored lights! We also got a great deal! What was hilarious was watching Michael trying to get all 7.5' of boxed Christmas tree into our old 1997 Mercury Tracer! At one point, I thought we might have to return it as we just couldn't get it completely in the car. Then, I realized it was no bigger than my string bass so we set the seats for that and VOILA! It worked. I had to ride in the back seat and look out for cars in Michael's now huge blind spot! It was an adventure! We will decorate the house next weekend. Expect photos!

The rest of the day was football and researching recipes and decorating tips for our Norwegian Christmas this year. I am learning so much. Chip and Betty's box filled with handmade decorations should arrive today so I am going to base my linens on the Norwegian flag colors. I also found three different recipes for cocktails using Aquavit, which Chip also included in the box.

I have a beautiful full-sized grand piano in the living room, which my sister always plays during our annual sing-along. While reading some website yesterday, I found a Norwegian rendition of the 20 Days of Christmas. Yes, 20 days not just 12 days. I will be printing up song sheets!

This week, I want to find some lights and garlands to drape around the family room sliders. We are moving where we place both Christmas trees and decorating other areas, including the fireplace. Usually, we just have poinsettias but this year, I want lights! Lights everywhere!

We are also trying to find Duraflame STAX to burn in the fireplace on Christmas Day. It is the only firewood my lungs like. No odor. They are hard to find but, if I have to, I can order them from our local Ace Hardware.

It is a screaming Monday. Mom and I have to drive miles on a busy, wet freeway north to pick up mom's new reading glasses at Costco then scream south on the same horrible, wet, stopped freeway to her eye appointment within an hour of each other. We may not make it! A bit nervous. She is having the macular degeneration shot in her eye and we always go to lunch afterwards. It makes her forget having the shot. Later this evening, I have a rehearsal with my Irish Fiddling group. A full day.

Fake Tree

It rained yesterday but it poured last night and more is expected today and tomorrow. We have been in a drought and I can feel my garden just smiling with each drop.

It felt great to work in my kitchen yesterday, making a breakfast quiche and a casserole for dinner. The house smelled like home. With that work behind me, I can play with Michael today. We are going to try to find a new fake Christmas tree today. Ours is fifteen-years old, several of the lights don't work anymore and it is just time. Michael wants one with colored, dancing lights. We'll see.

Fake trees. I was shocked when Dr. K. told me to never have a real Christmas tree again because of the possible mold or fungus that I would be bringing into our breathing space. Both are the causes of my disease, HP. The first year was so hard as I missed the "smell" of Christmas. I must admit that I do inhale as we walk by live Christmas trees while out in the world.

We are also going to make our lists to prepare for the holiday today, which I will try to attack each day leading up to Christmas. The goal is to do just a bit everyday so I do not get sick or overtired.

It should be a fun day of just the two of us hanging out together. My favorite kind of day.

Lung Transplant Holding Tank

We had a lovely Thanksgiving with family. Lots of conversations going at all times, mom was happy to be with her oldest daughter and her granddaughter and all was right with the world. Yesterday, we stuck our nose out into that world just to buy groceries and a bit of lunch. There was a nap involved, too!

Ron joined my pulmonary rehab class after his program at another hospital shut down less than 6-months after his lung transplants. We have become friends and he has shared so much information with me about the entire process of lung transplants. He also is nice enough to answer all my questions. We are even on Facebook together. He has Scleroderma. Five years ago, my university hospital would never have approved a transplant for anyone who was not in excellent health, expect for the lung disease. Secondary disease? Forget it. Times have changed. He has celebrated his first year with new lungs and is flying through all the recovery and maintenance processes. 

He sent this article to me today. It is about a new process of being able to keep lungs outside the donor's body for more time, thus more lungs are available for transplants. Ex-vivo Lung Perfusion. It is interesting. I had heard about it.  http://www.businessdailyafrica.com/Corporate-News/New-study-findings-to-boost-lung-transplant-surgeries/539550-3463284-13lv8sjz/

I also discovered that in California, there is no one dying waiting for lungs. They are available thanks to the education and passion of a male nurse at another university hospital. Years ago, he discovered that usable lungs were not being transplanted as it was not a priority. He put in protocols, taught other hospitals throughout the state how to process them properly and now they are available.

Years ago, I was at a seminar presented by two university hospitals and the head of one's transplant program told this story. A woman with familial IPF was transplanted. Three years later, her doctor received a phone call from her asking for help regarding her brother, also with IPF. He was in a hospital in another state failing while waiting a long time for lungs. The doctor said they would accept him, he was flown in and had lungs within a couple of days. It is sad that other state do not have such availability. If you are in another state which has few lungs available, please share this story with your doctor and encourage them to contact any university hospital in California for details.

Grateful

Happy Thanksgiving! I hope you are surrounded and emotionally supported by loving family. I am always so grateful that I have lived years knowing that I had a fatal disease. It gave me time to say everything I needed to say to those I love. I've had years to show them my love and I have tried to be grateful for every single day.

Mom, Michael and I will make the two-hour drive to my sister's house this morning. I am so looking forward to chatting with her daughter and fiancé about their April wedding plans. Michael and I will phone our son for a quick chat. He and a group of friends get together and all the men cook. I love that.

In other news: The dermatologist's office phoned last evening to give me the results of the biopsies taken from my face almost a week ago. Benign! A beautiful word!

So much to be grateful for! Pause a moment in the chaos and smile. This is life. Grateful we are still here!

A Cocktail Kind of Day

I spent the day in a car for hours then in another car and lunch with four 88-year old women. Now, I am not a drinker. We bought a house just after I turned 21-years old so we didn't have a lot of extra money to hang out in bars. With all the drugs I take, I have been really pleased that my liver has been strong enough to handle the drugs probably because I haven't had many cocktails since becoming drinking age.

On my way home late yesterday afternoon, I phoned Michael and asked him to make me a small, light cocktail. He was stunned! It was that kind of day!

I just can't go into all the details but even mom was so angry that I don't think we will be going for lunch again for a while. Her friend Grace is dealing with dementia or Alzheimer's and was mean and yelling at everyone. There were car issues but in the end, we had to drive her to a doctor's appointment after we dropped everyone else off at their homes. She told us this just before she kept us waiting in her driveway for 20-minutes as she didn't want to arrive too early. Then, she didn't know how to get to the clinic so I pulled out my iPhone. Got it. I was following it while she was yelling at me to put it away. As I was going the speed limit of 40MPH, she was screaming that I had to slow down because we were going to be in an accident. Did I mention that it was miles out of our way?

We found the place, dropped her off then worked our way back to the freeway and home around 3:00. Mom had told Grace when she set the lunch date that we had to leave by 2:00 to make it home before the wild evening traffic. I didn't get home until after 5:00, thus the cocktail.

That was just one event from the day. There were a few more. I just wanted to go home.

Today should be a total opposite day. I am meeting Natalie and the kids for lunch. Joyous!

Thanksgiving Week

Nothing like old friends. No explanations. No need to explain your kids or parents or relationships. They have met and watched and seen it all through the years. Dinner with Sue and Jim last night was delightful. We talked about everything. They had invited their children back home to save money to buy their own houses. All their bedrooms are full again. It is a lot of fun, everyone is on track and all are moving forward, even Sue. She is going to retire at the end of this school year and they have lots of plans to travel. They look great and still so involved in life.

Mom and I will be together today. We have no plans and sometimes that is when we have the most fun. Later today, I am finally getting my hair cut and colored for the holiday. My sister phoned to ask that we arrive between 1-1:30 on Turkey Day and, by the way, we are not having turkey. Okay. Prime Rib. We will be bringing the wine...I also will be bringing my new portable oxygen system. On the way home, I know I will be asleep in the backseat of the car and will need the supplemental oxygen this year.

The big day of driving for me will be tomorrow when mom and I visit my dad's crypt and change his flowers. Then, we will meet mom's friends for a birthday lunch for one of her friend's. It's good for mom's soul to spend some time with her dear friends. But, it is a long day for me. A long drive. Lots of traffic and some bad weather this trip. Hopefully, I will recover on Wednesday and be rested and ready to celebrate the holiday with my family on Thursday.

Keep Colds Away!

It is just dawn, there is a slight drizzle of rain, the outside ambient lights are on and the heater inside the house is running. All feels right with the world. It has been a quiet weekend before the craziness of a holiday begins.

For those of us with on immunosuppressant therapy, this is a scary time of year.

My sister phoned last night to confirmed the time they want us to arrive at their home for Thanksgiving. She also mentioned that my niece's fiancée's sister would also be joining us. Oh, and maybe her teenaged children, too. After we said our goodbyes, it began to worry me that they may not know that I can't be around anyone with a cold. Anyone getting a cold. Anyone exposed to the flu. Did my sister mention that fact to them? Did she ask if they were well?

In the beginning of my disease, I always asked if everyone was healthy and I even stayed home one year when someone had a cold. I didn't mind. Really. I would rather do that than get pneumonia or worse! Since no one but relatives have joined us for years, I didn't need to even think about mentioning it. So, today I will message her and ask her to let them know that I can't be around anyone  who has been recently exposed to someone with a cold or flu or if they think they may be coming down with something.

Tonight, we are going to meet our friends Sue and Jim for a simple dinner together. Sue is a teacher who is in her final year of teaching before retirement. We have known them since William was in kindergarten with their son. Dear friends. Life got busy and we would see them on and off through the years. I have a feeling we will be seeing more of them as they settle into retirement.

Quiet Weekend

We left the house at 8:30AM, the traffic was a real challenge as we made our way deep into the city on the far university campus for my dermatology appointment yesterday. On a good day, it takes about 45-minutes. Yesterday, it was an hour and ten minutes by the time we arrived and parked. Thankfully, I always give myself two hours, just in case. The doctor was already running almost an hour late and when she arrived, she went right for my forehead. "How long has that been there?" I had never noticed two small red pimple-like specks. After looking at over a dozen other spots we circled in the morning, she burned then off. She also asked that if two of them didn't go completely away, she wanted to be contacted.

Biopsies were taken of the spots near my eyebrow and right in the middle of my forehead. She said they came out well and she didn't suspect cancer but she was also not 100% sure. Within a week, we will get the lab report. In the meantime, I have two bandages on my face through Thanksgiving! They must be changed daily.

We made our way across town to the Filson store, Michael spent his birthday money on a fantastic hoodie then we drove back and even a bit further to the second university campus for our board meeting. We had a couple of hours to kill so we sat in the library, looked at the glorious views and whispered to each other. The meeting was really interesting and I can't blog about it! We got home around 7:30 totally spent. Exhausted. I fell into bed and was out like a light.

Mom and I have lots of plans for today. Our dance card it full! After her financial appointment here in town, we will head out to dinner before driving her home later in the evening.

My stormy weekend plans? NOTHING. I am going to rest and regroup to repair for Thanksgiving.

Connected

Yesterday, Michael dropped in to the coffee shop where our dear old friend still works at 70-years of age. Her daughter found us on Facebook last weekend and he told her that he would drop in this week. She was thrilled and they sat and relived many happy memories. Her life has been difficult. She was a kind person married to an alcoholic. She constantly tried to help and make life as easy as possible to a point that she hoped he wouldn't drink his beer. Retirement sent him into a downward spiral. Long story short is he now lives in another state in a convalescent home after having a heart attack and finding cirrhosis of the liver. He is Michael's age. After Thanksgiving, I am going to drop in to see her before my rehab class. She really wants to see me and we girls will talk about stuff a bit differently than the guys. I plan to do a lot of listening.

I was dying through the orchestra rehearsal last night. It was Beethoven. It was hard. There are only seven more rehearsals and I was sight reading a movement last night. Not feeling very confident! My brain hurt and I was physically tired. Michael hauled my bass into the house while I fell into bed and don't remember anything else.

We are moving quickly this morning as we are preparing the house for the housekeepers and then out the door to the city. My dermatology appointment is very deep in the city and traffic will be a challenge. But, I am not driving! Nice! It should be a nice day together.

Plans Changed

Within minutes of posting yesterday, all plans changed. No shopping. No meeting Michael for lunch. Instead, I talked him into going with me to Thursday's dermatology appointment, shopping at the new Filson store with his birthday money then we will drive back to the university campus for our late afternoon board meeting. Bingo!

So, now I had the day free. Rain was due by noon so I hurried into the gardens by 9AM, cut the grass and trimmed the back yard. The hydrangeas have been trimmed back. I finished near noon, came into the house, cleaned up and walked back to the front of the house to make lunch when I noticed it was raining! I had finished within a few minutes before the rains began!

Today's hair appointment was postponed to Monday so I have nothing on the calendar until orchestra rehearsal tonight. I have a list of things to do plus I have to get ready for the appointment tomorrow. Since I take azothioprine, I am not protected from the sun and must be check for pre-cancer spots every year. I have well over a dozen suspicious ones that need to be "frozen." In the morning, Michael will take a pen and circle the ones I can't reach and I will mark the rest of them. I don't want to forget to point any out to the doctor.

There is one of my left thumb that is concerning. It showed up two years ago, just after the yearly appointment then it was burned off last year. It is not really gone. I have a feeling the doctor is going to want to remove it for testing. Left thumb. That is the anchor thumb that works so hard finding the notes on the finger board of my string bass. If surgery is needed, I may not play for awhile. That's not good!

At Sunday's concert, the orchestra's flute player was wearing the coolest glasses. She told me she bought them online, they were very inexpensive and fun. Yesterday, I ordered a pair. They were so inexpensive that if they are awful, I'll just wear them around the house.

The sun is shining! I have the day ahead relatively free! It should be fun.

Shopping

I have a hot date for lunch today. Michael and I are meeting for lunch at Nordstrom before he spends his birthday money from my mom at Macy's. He needs new Levi's, I have coupons so it should be fun. Today's scheduled rehearsal with my Irish Fiddling group was cancelled as Leslie has a nasty cold. Nope, I don't want to practice in her house!

Sleeping was difficult last night. Suddenly, I found myself awake at midnight and I just couldn't get back to sleep. I thought a change of venue would help and went out to the couch in the living room. There I was. Looking around. Changing channels. Sighing. No sleep. Finally, somewhere around 3:30, I fell asleep until 6AM. I'm going to be goofy from lack of sleep later today!

We have Christmas at our house this year and I have made a decision that the featured menu will be Norwegian foods. Mom is half Norwegian but her mom was Irish so she never experienced Norwegian food. She is so excited. I am doing research now, think I have some great ideas but will be pulling it all together soon. William, who has been to Norway many times, keeps telling me about Liver Paste and Shrimp Paste and sausages.

The other holiday, Thanksgiving, will be at my sister's house. Mom is making her famous cranberries and I need to contact Lee to learn what she wants me to bring. Pumpkin Rolls this year? Maybe. I have been having fun making them lately. So good with coffee.

I just can't believe that the year is almost over. A moment ago it was April. Suddenly, summer was gone, the smell in the air changed and it was Fall. Where did the year go?