February 29 - Worldwide Rare Disease Day

Happy Rare Disease Day! Those of us with an Interstitial Lung Disease (ILD) are members of this group - a Rare Disease. I love that it is celebrated on such a rare day - leap year.

I copied this from the Rare Disease 2012 Web Site:

Welcome to Rare Disease Day in the USA!

More than 600 patient organizations, government agencies, educational institutions, clinical centers, and companies have signed on as Rare Disease Day Partners in the U.S., which means they support the global theme and goals of Rare Disease Day.   View the list of U.S. Rare Disease Day Partners on the Rare Disease Day US site (www.rarediseaseday.us).

NORD and the U.S. Rare Disease Day Partners are happy to be working with EURORDIS and friends around the world in support of this very important initiative.  Plans for Rare Disease Day 2012 in the U.S. include the following exciting events:

• a National Institutes of Health day-long symposium on February 29
• a Food and Drug Administration Rare Disease Patient Advocacy Day on March 1

Other plans, for which tools and resources are provided on the Rare Disease Day US website, include the following:

• a "Handprints Across America" campaign in which everyone is encouraged to submit photos of themselves with the Rare Disease Day logo for our photo gallery
• a "Visions of Solidarity" campaign in which individuals can describe, in artwork or words, what "Solidarity" -- the global theme for 2012 -- means to them
• suggestions for teachers to bring Rare Disease Day to the classroom, including a 1 to 3 day curriculum for high school biology or health teachers to use
• a media awareness campaign for which a press kit has been posted on the Rare Disease Day US website
• a countdown to Rare Disease Day with a badge for supporters to post on their websites

NORD salutes EURORDIS for its leadership in establishing Rare Disease Day.  We are happy to join the global rare disease community in supporting this important awareness initiative!  As our Partners in the U.S. post news on the U.S. website about planned activities, we'll also share it here.  On this 5th global anniversary, and on the ultimate "rare day" -- February 29th -- we celebrate the solidarity of patients and families affected by rare diseases, as well as of those seeking to improve their lives, around the world!

I Choose

Pretty well sums up what I am all about. So many people assume I am fine because I smile and laugh a lot or ask why I am not angry having the lung disease or why I am not depressed. It is because I choose to view life and what as happened to me in a way that does not hurt me. I choose the positive. This said it all to me.

This was posted on my new favorite place to browse : http://pinterest.com/   This is your final warning, this site is addictive. 

Lipitor and Fish Oil Update

I promised to report back to you, dear reader, regarding any side effects from my new drug and suppliments. The liver doctor had referred me back to my endocrinologist to monitor my cholesterol levels. He noted that my levels never changed during the three months of the liquid diet last year so they were not based on what I was eating. 

The levels were not too high but could become an issue during the future lung transplant process. Because of that, the liver and endo doctors both agreed that we must treat it aggressively.

It was a two-pronged attack.

It has been almost two months of taking a specific fish oil from Trader Joe's (in the blue and green box) with meals. I have increased the dosage to four a day - two at breakfast and two at dinner. Dr. M., the endocrinologist, is rather interested in seeing if this level of fish oil is going to have any positive effects to my inflammation-based lung disease as fish oil is very anti-inflammatory.

I was advised by an RN at the rehab class that it is wise to take the Lipitor in the evening so any possible effect would not be felt. 

My report - I noticed one slight problem. After working my way up to four fish oil caplets, I felt a slight uncomfortable feeling for two days. It took a bit to realize it was caused by the fish oil but I remembered that Dr. M. warned me that it might occur. The Lipitor? Nothing. 

Tomorrow, I am going to drive into the city to get a fasting blood test to see how I am doing at an appointment with Dr. M. in two weeks. 

The Move, Part 1

My mom

What a shock! We woke up this morning to layers of frost on the roofs and lawn which almost makes it look like Christmas! It is sparkling in the sun! The house was the coldest it has ever been since we did not have the heat set to turn on. It was 54 degrees in the house this morning! This only days after I was sitting in the garden in shorts tanning my legs!

I had fun yesterday as I was managing three different sets of text messages throughout the day. My sister, her husband and niece picked up a truckload of stuff from mom's in anticipation of her move into the independent living facility on Thursday. My brother and his wife were driving their RV the final leg from Laughlin, Nevada to mom's home to help her through the move. They will head back to their home in New Mexico on Friday. Michael's sister and his niece were on the road from LA to Las Vegas to visit with Michael's mom. All three sent me updates all day. It was really fun to follow them along on their trips.

Here is my mom talking with the kids at her elementary school
in Chicago.

Within the hour, we will head to mom's to see my brother and his wife, pack up a set of china and bring home a few things that she needs us to store for her. Love having attic space! Hopefully, there will be time for all of us to visit dad at the cemetery.

I am so excited to have mom closer to us. Grateful.

Sleep Studies

The tests to access whether I still need supplemental oxygen while sleeping are all scheduled. I have been without oxygen while exercising for three months and we took our first trip in seven years last January without dragging oxygen along. It was so freeing.

Dr. K. ordered two separate tests: an overnight spirometry and an overnight sleep test.

Overnight In-Home Finger Pulse
Oximetry Sleep Study

The spirometry equipment will be delivered to my house by Apria - my oxygen provider - along with instructions to set it up to sleep with a pulsometer. The data will be collected all night and I will drive the equipment back to Apria the next morning. The test is scheduled on March 8th.

The overnight sleep test will happen through my university contract with a separate company. They rent out an entire floor of a hotel five blocks from the hospital for the sleep tests. Michael will drive me up for the 7:30PM appointment and come back the next morning at 6:00AM. Poor guy for having to drive that much. I have the easy part!

This will be my second sleep test so I know the drill - clean hair, no products in it, nice pj's, not a lot of water that day so I don't awaken in the night, no sleep supplements. Electrodes are attached to different areas of the head and tiny microphones are taped near the nose and corner of the mouth. My job is to try to sleep with all of this on me! What I did last time was to totally wear myself out that day and not sleep a lot the night before. By the time I hit the bed, I was exhausted. This test is scheduled for March 22nd.

Hopefully by April, I will be free of all the oxygen equipment. Wouldn't that be lovely?

Freedom

Yesterday. Early morning mad rush to get to rehab and other errands before an appointment to have my prednisone caused glaucoma checked. Beautiful weather - sunny and in the low 70's. I wore black Ralph Lauren walking shorts, black and white women's golf shirt and mom's hand-me-down white jacket along with spunky apple green sandals. It felt great to wear shorts in February.

I hopped into my car - the convertible - and hit all the important stops through the morning. After food shopping but before heading back over the pass to get home, I suddenly had a thought. Shall I?

Giggling, it only took moments to put the top down on the convertible. I had never done it alone before. It was such a gorgeous day, not too hot and not too cold. I did it. It was amazing.

The vistas open up when driving in a convertible. The smells and sounds are more pronounced yet the radio volume did not need to be turned up. As I wove my way through the pass, I have never enjoyed the drive more in my life! There is a sense of freedom and a feeling of being almost a bit naughty.

Michael says that everyone who is struggling with a difficult diagnosis should own a convertible. It makes the struggle just a big easier. The hours and miles we spent in a convertible in the early part of my diagnosis helped so much. Somehow it gave me strength to put everything into perspective and arrive back home with a stronger commitment to put one foot in front of the other and to keep moving forward instead of folding into a heap.

If you can't have a convertible, I hope you find what will help give you strength to not give up. Take control. Eat well. Exercise. Smile.

Vintage Ruby Glass

My niece's bridal shower is Saturday, March 3rd, just two days after mom's move into the independent living facility. I will be driving us just over the 100 miles to my sister's house for the event. 

I adore my niece, Shelley. She is one smart cookie who is a writer for a living. Pretty great. She wishes she was around in the 1940's as she loves the fashions and the music and sensibilities of that era. Her house has many 1950's vintage pieces as well. 

Several Christmas' ago, I gave her some of my Aunt Rita's handmade in Hong Kong late 1950's vintage clothing and several furs. She looked fantastic in a gorgeous mid-calf white wool swing coat with a fox collar. I personally, could never wear fur. I get itchy thinking about the poor little animal who long ago gave its life for fashion. 

So, what can I possibly give to this woman for her bridal shower? Oh, I'll check some things on her register and buy some nice stuff, but she deserves more. What can I give her that will make her heart sing? I thought. Nothing came to me.

 My sister and I were given some very vintage ruby glass pieces that my Grandma Leona had for many years. One set was of small goblets without stems and the other was champagne glasses. My sister was giving first choice and took the goblets. I love the champagne glasses. We have used them on occasion and they have been in my cabinet for years. The color is glorious.

Speaking with my sister this week, she mentioned that Shelley has always loved the goblets so she is going to surprise her with them at the shower. Ta-Da! Perfect! I am going to wrap up all seven of the champagne glasses and give them to Shelley so the two sets will be together again, as they should be.

Stability-land

We are in a phase of this disease where everything is just rolling along. I try not to over-do things or wear myself out but continue to focus on diet and exercise.

As I think back to the past seven years, I realize there was a rhythm or an order of things. In the beginning, we were stunned by the diagnosed. Our lives soon became full of lawyers and doctors and a feeling of not truly understanding what was going on in my lungs. The future was uncertain and scary. I had other issues involved as well: GERD with its many tests, test of oxygen needs, tests to see if I was even strong enough to exercise, sleep tests, 6-minute walk tests, PFTs, bronchoscopes, biopsy, stress tests to see if I was strong enough for surgery, liver tests, endless blood tests and paperwork.

At the same time, we had to adjust our lives to no income ever again from me. All of my friends worked. I was isolated and alone. It was horrible.

Rehab brought with it friends with a common bond of having lung issues. Working out made me feel better and I built up my stamina and strength.

Eventually, I was deemed disabled by Social Security due to my horrible PFT numbers and lack of an immune system because of the various drugs, but it brought more paperwork and hoops to jump through.

We settled the Workmen’s Comp lawsuit after four years but lost the long-term disability challenge that we could not afford to bring to court. After the WC lawsuit, we were able to begin to make plans. We took a deep breath for the first time. We traveled. We were able to keep our house thanks to Medicare. We could afford the medical cost and drugs of this very expensive chronic disease.

As my health has stabilized and even improved this past November, we live in what I call “stability-land.” It is a wonderful place to be. We have an almost “normal life.” I want to live in stability-land for as long as possible. I fight to live here as long as possible. I use food and exercise as my weapons. I have the love of a great man to help with the battle.

But, late at night when I can’t sleep, I worry that it could all end in a minute. The downturns of my disease are quick and deadly. So, I live everyday to the fullest in appreciation of another day alive and living well, even though I have a fatal disease.

The process? Initial panic, stress, isolation, scared, realization of life changes, relationships shift, search for information, understanding, settling it all in the soul, gathering strength, living well.

It took me a long time to get here. My advice if you are in the initial panic stage? Be kind to yourself and take a deep breath. Try to do everything you can to get information about your disease and treatments and drugs. Eat well. Join a pulmonary rehab program. Hug your spouse a lot. Put one foot in front of the other. It will all eventually settle down and you, too can join me in stability-land. It is a lovely place to be.

Bored Sick

I am tired of being sick, still not well but now I am well enough to be bored. That is not good. Closets are being re-organized, nightstands are being cleaned out and yard work is being done. I should still stay down and quiet for just a few more days but my body is screaming to be moved.

For the first time since I have become ill with my ILD, this cold did not go into my lungs. I feel like I have won a battle but I don't want to backslide by doing too much. No rehab class today or Thursday because I also don't want to share this with everyone there.

I am at the point where it could go either way. Maybe I will be tempting fate if I go to the orchestra rehearsal Wednesday night. But, I should go. I need to go.

So today, I am booking more time on the couch after a quick trim of the grass. It is also supposed to be sunny and warm so I will bring a book into the garden later this afternoon. Not a bad plan but a bit boring!

"After" Photos

As promised, here are the "after" photos of the tiny front bathroom. The "before" photos are here: http://livingwellwithabaddiagnosis.blogspot.com/2012/02/crazy-day-ahead.html

We chose a light green with accents of lavender per mom's suggestion. It worked great. We still have to change the light switch and plates and put the newly painted heater resister back into place, but it is mostly finished.





The painting is a watercolor we fell in love with years ago. It has vibrant colors and is of San Francisco. The colors are perfect and it ties the whole room together.





We changed it into a powder room after William left for college. It used to have a large old vanity which made the room feel even smaller and glass doors for the shower which were miserable to keep clean. There was also a '70's linoleum floor and old toilet. It was update but it needed it again. We painted over some sponge painting I did years ago as it seemed so out of sync with the rest of the house. So, it is now clean and fresh and new.

Better and Looking Forward

I'm feeling better. Even thinking about cutting the grass today. Michael, on the other hand, is still feeling awful and looking very comfortable next to me on the couch! My mom now has my cold as I must have shared it with her while we were in the car in search of her new independent living facility. What a trooper! She has continued to go forward towards the March 1st move feeling miserable. What strength!

Betty and Chip are due on Saturday and will be with her through the move. They are even going to drive her to visit our dad at the cemetery as she feels she is leaving him behind. I have vowed to her that we will visit him a couple of times a year.

I hope to finish the front bathroom today and will post the "after" photos soon.

There is a busy week ahead. Tomorrow, I am going to visit my friend Cynthia for tea in the morning and will gossip about the school where I got sick. She is still there and they are now planning to add to the Pre-K to 8th grade school with a high school in 2013. So much to talk about. I love her two boys and can't wait to hear what they are up to. One is HUGE at Apple and works at the Mothership. The other has his PhD from Cornell and, I believe, is back teaching at his alma mater, MIT. Cynthia's husband is a rocket scientist. Really. That's what it says on his business cards! He and Michael really like each other as Michael always makes him laugh a lot. Great guy.

Later in the week, my gray roots will magically disappear, my glaucoma will be checked and my final Hepatitis shot will happen. Just another week in paradise.

...and China, Too

Shanghai, China

I am sitting here stunned. Our son is head of live sound for a major group who has just announced they are playing two concerts in China - Shanghai and Beijing. These concerts were added onto the end of the current tour through Australia, New Zealand, Taiwan, Philippines and Singapore.

When we were just married, my parents went to Hawaii for the first time. My dad said that one day he hoped that we would be able to go there. It was a dream. Over time, air travel became more affordable, we began to earn more money, which we used to travel. A lot. We have loved London and the Caribbean and Canada and almost every state in the US including Hawaii.

But, we never went to the Far East.

China? It was never a possibility. It wasn't until rather recent history that the West was even invited into China. I never felt I knew enough about it to appreciate its culture and history. It is not until recently that I totally regret not exploring Vietnam, Laos, Thailand, Singapore, Hong Kong, Japan and of course, China.

Our neighbor Ron married a woman he met in Shanghai who was a friend of a friend. He was invited to China as he is a dean at a university and his text books are used there. Susan was a high school English teacher. She showed him around, recommended safe local street food for a Westerner's system and they slowly fell in love. They have been married for over three years. We have learned so much about her life in China and I find it all fascinating.

I am thrilled that our son is having these experiences. My father would never have dreamed that his grandson would be in so many countries throughout the world and now, even China.

Off the Couch

The couch

I dragged myself off the couch around noon yesterday to forge for food. After driving over the hill, I had a nice chat with the butchers and a quick run through Trader Joe's and Safeway before arriving home just after the housekeepers were finished. Ah, the smell of a clean house! Lovely. After putting the groceries away, I was done. Tired. Point me towards the couch!

Only being home less than an hour, I heard the front door open and there was Michael. He changed into shorts and we sat in the garden for an hour when the doorbell rang. Ron, next door, handed me a bouquet of fresh chard from his garden. He joined us outside and had a glass of wine and a chat. After he left, I threw a pot of chili together for dinner.

The good news? I am feeling better this morning. The bad news? Michael has a sore throat!

I really don't want to push myself right now. Part of me wants to go over the hill to work out and the other part of me says to stay home and recover. I am leaning towards the staying home option.

Two side stories from yesterday:

I am searching for a new bathroom rug and towels for the newly painted front bathroom. A Kohl's was near Trader Joe's so I took a quick tour of their towel selections. As I was leaving, I heard something that made me pause. A song by the group William has worked for since 2004 was playing over the speakers throughout the store. I stopped. Smiled. It even was a song from the album William recorded for them. Their first concert on the current tour is today in Australia.

When I leaving Safeway yesterday, I ran into Barbara who worked up at the little school in the mountains where William went to elementary school. It is the same school where Winnie is going to hopefully attend. I told Barbara about Winnie and gave her an update about William. She has worked at this little school for over thirty years. She taught me so much about children. It was great to see her.

Cold? Yuck - American Thoracic Society? Love

A beautiful day driving down the coast and having lunch with friends today? Cancelled. Rehab class today? Cancelled. Orchestra rehearsal last night? Cancelled.

I am one sick puppy. The couch is my friend. Already worked my way through a box of Puffs. This is one nasty cold.

The coughing has begun. Gunk is coming up but it is clear. No infection yet.

In other news: The American Thoracic Society is one well run organization. I am so impressed with their handling of me as a speaker at their convention in May. A coordinator sent an e-mail yesterday to six parties requesting which dates and times we were available for a conference call sometime during a week in March. Very organized.

I have already been assigned a handler who will meet us and walk us through the process at the convention. We also have been invited to several other activities including a dinner in honor of all the presenters. I am loving this group.

Study of Microaspirations in ILD Patients

I have been asked to participate in a study for Microaspirations in ILD patients. After reading about the process, I don't think I am a good candidate.

Here is the study:

"This study aims to diagnose microaspiration in patients with pulmonary fibrosis and identify conditions that are associated with microaspirations. This study also aims to determine if microaspiration affects the course of the disease."

What is involved:

• "gather demographics, vital signs and other date from your clinical tests and medical history
• measure shortness of breath, reflux, and quality of life using questionnaires
• bronchoscopy to look for evidence of microaspiration
• esophageal studies to measure reflux 
• blood tests
• determine the frequency of urgent medical care use"

I don't think I will be accepted into the study because I had a Nissen Fundoplication which has permanently stopped any possible microaspirations from going into my lungs. Also, I have had three bronchoscopies and all three have not gone well. I bled out during the last one. As Dr. K. said, I do not tolerate them well and will never have another one.

It's too bad. I believe in research as the only way to discover why we get an ILD and to discover a possible treatment other than lung transplants.

UPDATE: I e-mailed the coordinator for the study who sent this to me this morning: "Nissen fundoplication is an exclusion criterion, so you're right, you wouldn't be able to participate. Also since you know that you haven't tolerated bronchoscopies as well in the past, we wouldn't want to object you to extra troubles or risks." So, I will not be participating in this study. 

Rainy Day with Mom

So much has happened! It was a tough 200 mile trip in heavy rain to drive my mom into our area to look at some independent house facilities. She signed a lease on an apartment in a facility just over the pass from us. She is thrilled with the location but her specific one bedroom apartment is too small. She has requested to move into the next available larger one with a patio. She moves March 1.

My brother Chip and his wife Betty are going to drive up from New Mexico about a week before she moves to help her and to take home a lot of things my mom has given to them. She is so happy they are coming.

After dinner last night, we sat in the living room listening to great music when mom asked about Whitney Houston. She is not up on pop culture and didn't really understand all the focus on her death. So, we got on YouTube and showed her National Anthem which I have never heard any singer perform better, the famous "I will Always Love You" then some of the later interviews and concerts when she was really drugged and couldn't sing anymore. She understood how terribly sad it was to see this vibrant woman sink into an early grave due to excessive drugs. The body can only take so much.

I am sick. No fever but a heavy cold and nothing in my chest yet. But, I am really dragging. I am driving mom home this morning then not moving for two days. No orchestra rehearsal. No rehab. No nothing. I need to recover!

Limping into the Week

I think I have been burning the candle at both ends. Too many dinners out. Been doing too much. I have a sore throat so we now go into anti-cold mode. In goes the Airborne and Cold Ease and Zinc lozenges and a nighttime antihistamine. That usually sends it away but this one feels like it is going to stay. So, if I feel any lung congestion, I will phone Dr. K. and request antibiotics to attack a brewing bacterial infection.

It is raining here. Hard. I have to leave within the hour to drive the 100 miles over a bridge and over three mountain passes to pick up my mom and bring her in to see the independent living places. I had hoped for an easy drive but...

I did finish painting the front bathroom except for a second coat on the ceiling, put all the essential stuff back in for mom's visit then did a quick cleaning of the house. Last night, I watched the Red Carpet for the Grammy's but read that William's group did not win in their category. This was their fourth time at the Grammy's. Today, they leave for a month long tour beginning in Australia.

Michael was trying to finish some stuff at his shop through early evening so I crawled into bed at 5:00PM last night and awoke at 6:00AM. I feel goofy with so much sleep but it was so needed!

It's going to be a long few days and I am not feel strong going into it.

Fast Change

A big step forward. My mom put her house on the market and it sold, for cash in a bad housing market in her area, within 24 hours. She must be out in 30 days. Way too fast. We are not prepared as we thought it would take months to sell.

She is going to look at two independent living facilities in my area this Monday and Tuesday. So, today I am putting the second coat of paint on the walls of the front bathroom, will remove all the tape and put it back enough for her to use. After she goes home on Tuesday, I will finish painting the ceiling. It really has been a project!

The worst thing that could happen? We would have her as a housemate until she is able to find someplace to live. We would have a ball, talk until we are hoarse and probably drive Michael nuts!

My wish is that she finds a facility that is affordable where she can be comfortable and closer to us. Fingers crossed.

A Moment

Last night, we were sitting together in a restaurant surrounded by three couples who have all become our friends. Good friends from our book club. There was never a quiet moment. Time flew by.

In the middle of it all, I suddenly paused to just drink it all in. This moment. The smells. The sounds. The people.

I was reminded that it was a bloody miracle that I was sitting there, seven years after being given a bad diagnosis, with no supplemental oxygen, weighing less than I have weighed in decades, enjoying couples who were both new to us and old friends, sitting next to the man who still loves and even still likes me after being married for almost 39 years and I wanted to weep.

Years ago when the diagnosis was very new and very dire, I wish I could have been able to sneak a peek of that moment in the restaurant and know that was where I was heading instead of into an early grave. What drove me to dismiss the predictions of my early demise? I knew in my gut that I could take control of the treatment of the disease. Yes, I did what the doctors wanted me to do but I knew that it was, after all, MY body. I began an anti-inflammatory diet immediately. I could at least have control over what I ate even if I had no control over the disease. Also in August of 2005, I began pulmonary rehab which, I believe, has greatly lengthened my life and provided a much better quality of the life I have left.

The future is still unknown. It could all change tomorrow with a resounding crash. But last night, just for that moment, I was so grateful and surprised how far I have come. It was a moment I shall never forget.

Rare Disease Day - February 29, 2012

It's coming. Rare Disease Day is February 29, 2012. I love that date as itself is rare! We who have an ILD are members of the Rare Disease Club. Here is a web site about the plans for this world wide event.

http://www.rarediseaseday.org/


Sally, the head of my ILD Support Group is scheduled to speak at the Global Rare Disease Day program on that day in Modena, Italy. Modena has the only ILD clinic in Italy and only one of three in Europe. The head of the clinic, Dr. Rinaldi was one of the speakers we met at an ILD Support Group meeting. A brilliant man.


The Pulmonary Fibrosis Foundation is also participating in this day of bringing awareness to rare diseases. Here is their web site 


www.pulmonaryfibrosis.org/projectpf


Susan from the ILD Support Group has pass all of their information along to us in the support group. She has suggested that we as a group participate in the "Handprints Across America" gallery proposed by the Pulmonary Fibrosis Foundation. They would like people to post a photo of themselves with a poster of Rare Disease Day.  Susan asked if we as a group wished to have a photo taken of ourselves with the poster at the next week's meeting and post it as a group of people with rare diseases.


We are certainly a rare group! 

Which Way is Up?

Crazy day ahead. Already watered the yard, had my coffee and answered lots of e-mails. It's only 7:00! Quickly pulling the house and myself together to meet Natalie and kids for an early brunch over the hill before the rehab class at noon. Afterwards, I need to buy some baby clothes as presents to take with us to dinner on Saturday night, make a lamb stew for dinner and begin to paint the front bathroom.

Just a normal day in paradise!

It is also so beautiful here and should be in the mid-60's in our garden this afternoon.

Bathroom "Before"

My goal: Early to bed tonight and to try to sleep a bit late tomorrow morning. We are meeting friends for dinner tomorrow night so I need to not get worn down. I really don't want to get sick. There is something going around here and I don't want any part of it!

Other goal: To have the bathroom painted and back together by Sunday night. It is a tiny bathroom but I don't want to rush it.

One busy day ahead!

Another "Before"

The Young, the Aging and Updates

Finally, I slept well last night just in time to not get enough sleep tonight! There is an orchestra rehearsal this evening! HA! Natalie, Winnie and Oliver were here for a few hours yesterday afternoon and not only entertained me, but Michael got home in time to enjoy a little "kid time." Towards the end of the visit, we put on coats, grabbed umbrellas and we all headed outside to dance in a light sprinkling of rain. I love our visits together.

I have been contacting a number of Independent Living facilities to gather information for my mom. There are only two that she is really interested in touring in March. One was a former hotel totally remade into rather large lovely apartments with full kitchens, patios and even has a swimming pool! It is just over the pass from us, three blocks from the mall, a parking lot away from a drug store, a frozen yogurt shop across the street and an upscale market a block away. Great location. The other is about 35 miles away in a very high traffic area, near a mall but she would have to drive on a freeway to get anywhere. It is about 40% cheaper than the first place. I so hope she chooses the first place.

Health update: Today is day 3 of taking the special fish oil and Lipitor and I feel no, zero, zip side effects. Still struggling to keep my oxygen saturation over 89 on the treadmill in rehab.

Diet update: Having special Greek fat-free plain yogurt with fresh blueberries for breakfast. Rare for me. The yogurt still has some sugar in it but is far less than regular yogurt. Such a treat! Fish and artichokes for dinner tonight. Doing great maintaining my weight loss.

Michael update: Eating three pieces of bacon right now. Just sayin'.

William update: Heading to Australia on a tour with the big band followed by concerts in New Zealand, Taiwan, Philippines then Singapore. He is excited to see New Zealand for the first time on this trip.

Off to the other rehab I go!

Social Weekend Ahead

A small storm blew through last night. That is the last of the rains for another 10 days or so. This has been one dry winter. It was so mild, even at night, that we had our bedroom door opened and I laid in bed listening to it in the early morning hours. Such a great sound. It made me snuggle deeper under the sheets.

I had foreseen that this year was going to be a very social one and it is living up to that expectation. This weekend we are meeting a bunch of local friends for pizza (UGH!) on Friday night. Maybe I can order a single, gluten-free, no cheese, lots of veggie pizza. I love this group of people. Our old book group: one couple plays in the orchestra with me, another gave us their points for our suite of rooms in Palm Springs last month and finally the young fun couple with roots in the auto industry in the Detroit area. Michael loves talking car stuff with them. Before meeting everyone Friday night, I will be at a rehearsal with the young violin students in anticipation of their concert in late April and a performance as a prelude to my orchestra concert in May. It will be a long day!

Every morning Michael has a very healthful breakfast of oatmeal, cottage cheese, cereal or crustless quiche.  He makes the best coffee for us. After he leaves me, he stops at a Peet's Coffee near his work. I think there might be a pastry involved! Several times a week he runs into a couple - Essa and Faye - who own a body shop where he worked over three years ago. They have slowly developed a nice relationship and Michael discovered they are huge fans of Chez Papa, our favorite restaurant, and they also know the owners. So the plot was hatched. We have reservations on Saturday night to meet one of the owners for dinner along with his wife and new baby and our mutual friend Don. They know we are bringing another couple, they just don't know who it is!

I haven't seen Essa and Faye in years and previously only met them very briefly on a couple of occasions. Michael so enjoys their company that I have a feeling I will be seeing a lot more of them!

Old friends are also returning this year. Long lost Mark has made his way back into our lives after years of wondering what happened to him. We have a lovely e-mail relationship. I got a virus-filled e-mail from Jeannette, who worked as the Middle School Music Specialist at the school where I got sick. I didn't open the attachment in the suspicious e-mail but had an old e-mail address of hers. I wrote. She responded. We are also getting together for the first time in five years. 

It is interesting how people flow in and out of the daily pulse of life. New and renewed. 

Sleepwalking Through the Day

Long night. It often happens on Sunday nights. Because I take Sundays off from exercise, my body craves movement. We went to bed at 8:30PM, up at midnight then up again at 3:00AM until 5:30AM, slept for thirty-minutes then awake for good at 6:00AM.

And I have a long day ahead of me.

When the tax person phoned on Saturday, we talked about Independent Living places for my mom. She knew of one in particular which might be perfect for my mom. I am going to drop in this morning, look around, get the prices and if affordable, arrange a tour for mom when she is here in March.

I want to be on the road early this morning, going to rehab and the butcher then to the Independent Living place followed by a stop for new running shoes and Trader Joe's. I should be hungry and exhausted when I get home this afternoon.

Before the rehab class tomorrow, I am going to buy new paint for the front bathroom. The goal: paint it before mom's visit in March. Natalie and the kids are coming after the rehab class. Going to be another busy day. Hopefully, I will sleep well tonight!

Superbowl Food

Superbowl + Food = Trouble.

Maybe.

I just saw something on TV this morning that we in the US will consume millions of chicken wings and over seven million pounds of avocados for guacamole during the Superbowl. That makes me shiver. I personally hate chicken wings!

Why do certain celebrations give those of us with weight issues a "pass" to eat anything we want all day? Thanksgiving, 4th of July, Birthday, Superbowl. What I say? Wrong. No, thank you. Tomorrow comes along with the regrets of eating too much. Just not worth it to me.

Today's line up of food for our household? Egg whites with some salsa this morning (Michael is cooking them right now), tuna salad and veggies for lunch and crab for dinner. Crab is the Superbowl "treat." One treat. Plain crab. No butter.

Delicious.

So I guess we all have a choice today. Those choices will determine how we feel tomorrow.

Medical Tests

Mammogram time. I had a great technician who delivered a fast and pain-free experience. The letter came in the mail yesterday that everything was fine. "See you next year."

A relief. I had a core biopsy four years ago right in the middle of the worst times of my lung illness. The idea of also having cancer was overwhelming. It turned out to be nothing but I have a mammogram every year just to be sure all is well.

It has been 10 years since my last colonscopy and I think it is time to schedule that fun procedure. It is on my list of things to do for next week. (And yes, Joanne, there always seems to be a list!)

Why all the tests? I was made aware that these tests along with many others are part of the process for lung transplants. If I am having any issues, I want to know them now. These are tests that I can schedule myself. I know I am having or had medication-based issues with my liver and cholesterol and my weight. All are or will soon be under control and will be non-issues when the time comes for the myriad of tests for new lungs.

I think I have been pushing myself to hard the past couple of weeks. Today, I am going to work in the gardens: pull some weeds, cut the grass, water everything. We have had very little rain and everything is dry. It is sunny but not too warm so it will be a pleasant gardening day. Afterwards, I think a short nap is in order.

Lack of Oxygen

At the rehab class yesterday, I just couldn't keep my oxygen up high enough to continue without supplemental oxygen. Even with purse-lip breathing, I couldn't get it above 87. It must be a minimum of 90. The balance of the workout, I was with the oxygen but was not happy.

Depressing! What is happening?

I realized later that I was exhausted from the orchestra rehearsal Wednesday evening. I woke up tired and slept over 10 hours last night. Maybe I was not in top shape because of that, I hope. What I don't hope is that things are changing for the worse or I am coming down with something or there is an infection brewing in my lungs. Only time will tell.

In the meantime, I am still sleeping with oxygen at 1.5 liters until the sleep test. I did notify Dr. K.'s office last Friday that I have been off of oxygen for two months, so I was ready for the sleep test. With yesterday's issues, I don't know that, in fact, it is still true!

Today I am meeting my friend Dolores for lunch at a Vietnamese/Thai restaurant near Michael's shop. I had such an interesting lunch with her son a couple of weeks ago and I love our lunches together. I feel so much smarter after spending time with her!

It is going to be beautiful here on the coast for the next few days. I foresee us spending a lot of time enjoying the sunshine in the garden most of the weekend.

A Good Surprise

Last night, we had the first rehearsal of the orchestra for the new season. New music. I used to hate that but as I grew as a musician, I learned to love the joy of site reading. Last night, we rehearsed just one piece - Haydn's Symphony No. 94. The "Surprise Symphony." There are many musical jokes in the piece but it is really the one in the second movement that brings fame to the symphony.

When I was still at the school, we used to expose the Early Childhood students to this movement. The story goes that Mr. Haydn was a little irritated that his audiences seated in salons in nice cushy, comfy sofas and chairs after a full meal of rich foods and lots of wine, would doze off. He arranged a "luring in" of sweet, simple, quiet music until suddenly there was a very loud chord which was to wake everyone up. Hah!

But, as I found today in Wikipedia:

In Haydn's old age, George August Griesinger, his biographer, asked whether he wrote this "surprise" to awaken the audience. Haydn replied:

No, but I was interested in surprising the public with something new, and in making a brilliant debut, so that my student Pleyel, who was at that time engaged by an orchestra in London (in 1792) and whose concerts had opened a week before mine, should not outdo me. The first Allegro of my symphony had already met with countless Bravos, but the enthusiasm reached its highest peak at the Andante with the Drum Stroke. Encore! Encore! sounded in every throat, and Pleyel himself complimented me on my idea.

...Or so he says. I still think he was a bit irritated at his audience but then became amused at his little joke. The entire symphony was fun to play last night. It will be a good piece for the concert.

Aaron Copland

Other pieces on the lineup for the May concert? 

• Overture of "La grande Paque Russe by Rimsky-Korsakow, which I don't think I have ever played.
• Themes from the opera "Hansel and Gretel" by Engelbert Humberdinck. No, not the famous pop singer, the original. He was born in 1854 and died in 1922. We used to also teach this opera to the children at the school. It's musical themes are known to everyone's ear.
• Copland's "Hoe-Down" from "Rodeo" is famous, especially as the music for an advertisement for meat. Copland always looks easy on the page but is difficult to play correctly. I am so looking forward to playing this again.
• Finally, "Lieutenant Kije" by Prokofiev's, yes the same man who wrote "Peter and the Wolf." This was actually written for a Russian movie sound track. A hilarious movie about a made-up Lieutenant whose stories about him are so excellent that he is given a huge promotion, which brings on the complication that he must appear before the general. So, they had to make up that he suddenly died in battle. The famous Troika is played around Christmas time as a troika is a horse pulled sleigh with lots of bells around their necks. I bet you have heard it many times. But, what I am most excited about, there is a bass solo in the second movement - Romance. Yes, I have a solo. A rare event.

So, that is the upcoming concert. The music is rich and fun and good. Go to iTunes and try one or two out. 

Life's Happy Downtimes

Life's rhythms. I've been noticing them lately. They range from frantically busy to bored silly. I'm somewhat in the bored silly stage waiting for something to happen.

The next few days are going to be quiet so I am planning to take advantage of the downtime. Paperwork. End of year paperwork. Preparing for tax time paperwork. And rehab. There is always rehab.

Upcoming goodness? 

Lunch Friday with my dear friend Dolores. 

Rehearsals begin with the little violin students I performed with in December for a one-piece presentation as a prelude to my orchestra concert in May. 

An ILD Support Group meeting featuring a Hospice organization preceded by a lunch with my friend Susan.
I am going to buy the paint for the front bathroom early next week. Time to update it again. I am planning on attacking a wall a day until it is finished.

An expected warm weekend ahead so I am dreaming of sitting in the garden with a good book and a large glass of iced water. 

Other than that, quiet. No doctors appointments, no meeting, no performances, no "have-tos." Nothing. 

Pretty wonderful.