Living Well with a Bad Diagnosis - Lung Disease

Friday, December 30, 2016

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.

Thursday, December 29, 2016

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.

Wednesday, December 28, 2016

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.

Tuesday, December 27, 2016

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.

Monday, December 26, 2016

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




Sunday, December 25, 2016

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.

Saturday, December 24, 2016

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.

Friday, December 23, 2016

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. 

Thursday, December 22, 2016

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.

Wednesday, December 21, 2016

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. 









Tuesday, December 20, 2016

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!

Monday, December 19, 2016

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:

Sunday, December 18, 2016

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.

Friday, December 16, 2016

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!

Thursday, December 15, 2016

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.

Wednesday, December 14, 2016

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!

Tuesday, December 13, 2016

$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.

Monday, December 12, 2016

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.

Friday, December 9, 2016

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.

Thursday, December 8, 2016

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.

Wednesday, December 7, 2016

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.

Tuesday, December 6, 2016

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!

Monday, December 5, 2016

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.

Friday, December 2, 2016

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!

Thursday, December 1, 2016

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.