Saturday, December 31, 2011

Home Alone

By this evening, the house will be void of visitors. Two bedrooms and bathroom will be empty of suitcases and stuff once again. Mom was here for a few days along with William and Kimberly but she left on the 26th and our son and girlfriend are flying home this evening.

Quiet house ahead.

Our New Year's Eve plans? The boys are working on the Mustang today trying to get as much of the interior done as possible. After we drop them at the airport, we will return home, take a deep breath, enjoy the evening and I will probably be snoring as 2012 enters. I am tired.

Sunday will find us removing all traces of Christmas and sending it all back into the attic for another year. It went by in a flash.

Most people cheer and celebrate a new year. I always think it is a jump into the unknown and prefer to wait to see if it is a year to celebrate or to forget. 2011 was a great year for us - except for that Lung Transplant Clinic thing - and I hate to see it go. We hope we both stay as healthy as possible in 2012, are able to travel a lot and enjoy our family and friends, both old and new.

Enjoy your New Year's Eve!

Friday, December 30, 2011

Coalition for Pulmonary Fibrosis Year-End Gift


I received this email today from the Coalition for Pulmonary Fibrosis and thought it was important enough to post two blogs in one day! If you are able and wish to make a donation to this group, the below will be informative as well as an easy way to make the donation.

My personal thanks to CPF. They are lovely to deal with, fund major PF research and are very organized. A well run organization. Your money will not be squandered.

Here is the information:


Today and tomorrow are the last days to support the 2011 effort to find a cure for Pulmonary Fibrosis (PF)!  
If you have not yet made a year-end gift (it's tax-deductible), please consider doing so today. If you have, we thank you for taking a step to stop PF. 
The CPF’s list of heroes is long and it includes patients who give generously of their time to help others, family members and friends who come to Capitol Hill to support the legislation for research funding, families and support groups hosting fundraisers and awareness events across the country, all those who have cared for and assisted those affected by PF, and the loved ones we’ve lost who so courageously fought against this horrible disease. Everyone who makes a contribution at any level is a hero!
We are all fighting a 100% fatal disease that can strike any one of us. We may not have treatments yet, but there is consistently new and exciting research information that demonstrates vastly increased understanding of the disease process.
We are on our way to success, but it’s critical that everyone is on board to make certain the progress continues!  Help us make sure that those diagnosed today may be saved tomorrow.
Please make a year-end gift to help us stop PF in its tracks.  In celebration of our 10th year, we are asking supporters to make a contribution of a multiple of $10, whether $10, $50, $100 or $1,000.  Click here to donate online.  
Here is what you will be supporting:
  • Cutting-edge innovative research via a peer reviewed program (Over $2 million funded)

  • Advocacy for passage of the Pulmonary Fibrosis Research Enhancement Act (67 co-sponsors and climbing)

  • Continued assistance with resources needed by patients and caregivers (Educational newsletter/brochures, toll-free line, and informational website)

  • Expanding national awareness of PF (New Daughters of PF program with Actress Rose McGowen as Chair)

The CPF helps every patient at no cost – that help is supported by you.  The CPF makes generous (over $2 million in total) contributions to research because we must save lives.   That life could be yours or anyone you know.
Thank you for being a hero – the entire PF community is grateful.
Your grateful partners in the fight against PF,
CPF Staff

Patient Web Charts

Home cooking. I think that is one reason our son loves being home. Last night was a variety of chicken and turkey sausages from our organic market with three colors of peppers and onion along with a salad. He is going to use the leftovers with eggs for breakfast this morning. Tonight, braised short ribs and sauerkraut with mashed potatoes. He is very happy.

I have already mentioned that my mom has bronchitis and I just learned that my niece has a nasty cold. Love it when a family shares its germs at Christmas! My university hospital now has a site set up with a password for a patient to see all test results and will even put them into a format to compare the tests over time. It also allows e-mails to the provider within the site. If there is a reply, it notifies the patient to check the site via e-mail. Very interesting but I had never use it for anything other than checking my blood test results.

Since I was so physically close to my mom for days leading up to her bronchitis and I was having a non-productive, sporadic cough, I thought it was time to test the system with an e-mail to Dr. K. I sent it yesterday morning and got a response yesterday afternoon. She ordered an antibiotic at the local drug store for me. Done. Thank you very much.

Then, suddenly, I was notified that I had another message on the site. What? I opened the message and really smiled. I try to use my Prescription D Medicare dollars as much as possible without going into the "hole" at the end of the year. Earlier in the week, I had ordered almost all of my drugs and will be in good shape for 2012, especially if I have to begin cholesterol medicine which can be expensive. One of the prescriptions had expired and the drug provider was to notify Dr. K. for a new yearly prescription. The new message notified me that this was completed.

This is a big deal. In the past, I have gone weeks waiting for a drug, would call the mail drug company and they would tell me that the doctor never got back to them. This could be a problem if I were to run out of, let's say, prednisone. I love that this possible gap has been filled. This morning, I received an e-mail from the drug company that the drug is in transit. Easy. I love technology when it works!

Thursday, December 29, 2011

Christmas Extended

We were all up and out by 10:30 yesterday. We had made plans to meet our friend Don for donuts at the fabulous Dynamo Donuts but discovered at the last moment that they were closed for the week. NUTS! We met, instead, at Don's loft in a very cool and hip area of the city. Loft living.

We walked three blocks to the best "greasy spoon" with a Cajun twist. Great food. Nice people. The only issue was Kimberly and I were seated with our backs facing the street. The sun was beating in on us and both of us were extremely hot. When we finally finished, we raced outside for air. The cool breeze felt terrific. We then crossed the street to an amazing coffee place that brews each cup individually. Sometimes there is a line around the block. They have tables along the side of the building and that is where we sat in the sun but with a lovely soft cool breeze. It was so satisfying, we all felt totally relaxed.

We drove back home down the coast where William and Michael continued to work on the Mustang through the afternoon and after dinner. It is looking great.

Today, I am going to rehab, Michael is going into work while William and Kimberly head back into the city for some fun. While they are gone, I am going to put the Christmas presents away, water the pots in the garden, balance the checkbook and pay the bills due on Monday; all the things I have not done while we have had people staying with us.

With continued company, I still feel the soft glow of Christmas surrounding my days. Extends the holiday. Extends the Christmas spirit. Just lovely.

Wednesday, December 28, 2011

On the Coastal Trail After Many Years

I got stuck once. Went too far and couldn't get home. I had to phone home to have Michael come and rescue me. From that point on, Dr. K. said that I should only exercise in hospitals, not gyms, hospitals. So, for the past almost seven years, I have exercised in hospitals on an average of five days a week never returning to the trail.

Yesterday, the sun was out and it was 58 degrees which was the perfect temperature for a walk on the Coastal Trail along the ocean. Kimberly and I took off, she in her running shorts and me in my long workout pants and heavy jacket. When we got there, she took off at a sprint down the trail and I walked quickly after her though she disappeared rather quickly.

After about 1.5 miles, there is a long bridge over wetlands. Many years ago, it felt like a very long walk to the bridge and back. I had told Kimberly that I would make it to the bridge then return to where we had split up. She had never been on the trail before. I shared other points of interest that she would see like the pristine beach that can only be accessed on foot, a State park and one point on the trail that run right along the edge of the cliffs.

I made it to the bridge, made a quick stop to check out the beautiful beach then headed back to where we had agreed to meet. It was not difficult. It was not exhausting. I was shocked. Through the years, I guess the muscles I have built up in the rehab programs in the hospitals have really made a difference in how I was able to walk the trail. It was a piece of cake.

So, I waited at the meeting point. And waited. I began to worry. She was about 30 minutes later than she thought she was going to be (no cell phone with her). I had visions of calling my son to tell him that I had lost his girlfriend! Lost. Gone.

After another 10 minutes, she arrived and was so happy to see me. She had run on the bridge, checked out the beach and ran along the cliffs. But, she thought we planned to meet at the bridge and had run back onto the beach to see if I was there then waited. We had a good laugh about losing each other.

We made it home before Michael and William then took ourselves out to a great lunch in town before having a crab feast for dinner. The boys worked on the 1966 Mustang convertible they are building together for most of the afternoon and after dinner. The exterior is now finished. All the parts and panels and doors are on the car. Today, they will be finishing up the interior. It will head to the mechanic for the final check up next week then it will be driveable. Michael is waiting to paint it when William has a couple of weeks free in the coming year. He wants William to do a lot of the actual paint work. How great is it going to be to own a car that you and your dad built together from just a shell?

Tuesday, December 27, 2011

Lazy. Just Plain Lazy


What a lazy day yesterday. William, Kimberly and I sat in front of a roaring fire all day and just chatted. (Using STAX wood, by the way. No odor. No irritation to my lungs.) Michael drove my mom home while I made dinner and our friends Jill and Wayne came for a nice visit in the evening.

When William was in college, he always made it a point to visit them when he was home on break. He, too, has watched their children grow up so it was nice to have a bit of time with their son Evan as well. When he got the big job with the big band, he invited the whole family to the concerts and would visit them every time he was home. Longtime friends. Always the best.

Back to the other rehab this morning then a quick run through Trader Joe's. Fresh Dungeness crab is on the menu for tonight's dinner.

Monday, December 26, 2011

Post-Christmas Time









Ah, it is over for another year. We had a very fun day. We arrived at my sister's around noon, had a lunch as if we were in a diner then dinner of fancy diner food - braised short ribs, potatoes gratin and fancy peas. Dessert was a choice of root beer float, sundaes or cherry pie. Some of us - Michael - had a sundae and a piece of cherry pie!

Michael drove my mom back to her home this afternoon while I stayed and enjoyed a quiet afternoon with my son and Kimberly. It was priceless! Love being with them.



Off to make dinner - a pot of chili and a nice beet and goat cheese salad. Simple. I hope everyone enjoyed being with their families. My best to everyone and thank you for reading my blog. We are now having record breaking hits and I hope to continue to blog the medical and research information about lung diseases and ILDs along with my personal journey in 2012.

Sunday, December 25, 2011

Merry Christmas

We just ate our Christmas morning breakfast of cinnamon rolls rolled with a piece of bacon (!) and portobello mushrooms cooked with an egg in it! Both a success!

Into the showers we all go then into the car for the drive to my sister's house for the day.

I hope you, dear reader, are surrounded by family and friends today. May you have a Merry Christmas!

Saturday, December 24, 2011

Waiting for Christmas Magic

It's dark outside. It's also very cold. After just six hours of sleep, we are deciding who is going to drive to the airport to pickup Kimberly and William. I know the airport better but Michael says he can wing it.

My bet is on me. We'll see.

Mom is still asleep after a fun night at a party in the city. Interesting people, good food and nice conversations. We hated to leave around 11:00.

All my baking is finished and we need to distribute goodie plates to only two neighbors, the others are already enjoying their baklava and cake balls.

After dinner tonight, we are going to another party then to bed to wait for the Christmas magic to happen. The magic that reminds us of Christmas' past, the dear relatives who are no longer with us, the sweetness of hearing a Christmas song that brings tears to the eyes, the warmth in our souls as we look around the Christmas table in appreciation all those with us.

Another year alive. For me, that alone is Christmas magic.

Friday, December 23, 2011

"Lips for a Cure" - Pulmonary Fibrosis


I love this organization. The Coalition for Pulmonary Fibrosis. They put their money where their mouth is. Literally. They have just begun their latest fundraiser for Pulmonary Fibrosis research joined with Mary Kay Cosmetics called Lips for a Cure. The information is below:

The CPF is Kicking off the Lips for a Cure campaign! Look great in the New Year with Mary Kay products and help find a cure for Pulmonary Fibrosis (PF) at the same time!  For a limited time, 50% of your purchase of any Mary Kay product will go to the Coalition for Pulmonary Fibrosis - to find a cure for PF and support patients and families.  Just follow the instructions below and use the code supplied when placing your order.
To order Mary Kay products through this promotion, visit www.marykay.com/kmeyers and type in the code: LIPSFORACURE in the comments section of your order form. To place a phone order, contact Kim Meyers at (703) 200-8462.
Please share this information with your friends, family and co-workers and ask them to support Lips for a Cure, too!  Hurry, offer expires February 29, 2012.
To view the email ad, click here.


COALITION FOR PULMONARY FIBROSIS KICKS OFF “LIPS FOR A CURE” PROMOTIONAL CAMPAIGN WITH MARY KAY PRODUCTS
Promo Pays Tribute to Mary Kay Director Lost to Pulmonary Fibrosis
Culver City, CA – December 22, 2011/ - The Coalition for Pulmonary Fibrosis (CPF) announced today the launch of the first campaign to raise funds for Pulmonary Fibrosis (PF) while paying tribute to a Mary Kay independent sales director who lost her fight to PF at the age of 45.  The “Lips for a Cure” campaign kicks off today and runs through February 29, 2011.
In August, Doris Lowenthal, a Mary Kay independent sales director, lost her fight to Pulmonary Fibrosis (PF), an incurable lung disease that has no FDA-approved treatments, and which kills more than 40,000 Americans each year - as many as breast cancer.  Ironically, Lowenthal was a two-time breast cancer survivor and received a lung transplant for PF five years ago. To read Lowenthal’s story, visit:http://www.coalitionforpf.org/ofs/pdf/30DorisLowenthalstoryAugust2011.
“Doris really wanted to hold a promotional campaign this holiday season to draw attention, funding and awareness to Pulmonary Fibrosis, the disease that ultimately cost her her life,” said Barry Lowenthal, Doris Lowenthal’s husband.  “When she was in the hospital, she was talking about how great this campaign was going to be.  We worked to make this effort happen for Doris and other patients and families fighting the disease.”
Kim Meyers, a Mary Kay independent senior sales director and close friend of Doris’, worked with the CPF to plan the sales promotion and she will lead the effort as well as other future promotions.  “Doris was such a beautiful person and really wanted people to understand this little known disease from which she suffered.  She freely shared her story with others and now we’re sharing her story and kicking off the ‘Lips for a Cure’ in her memory,” said Kim Meyers.
“We are so fortunate to have known Doris and worked with her on and off Capitol Hill to raise awareness for Pulmonary Fibrosis,” said Mishka Michon, Chief Executive Officer of the CPF.  “She was so upbeat and positive and we will keep her memory alive with the success of ‘Lips for a Cure’”.
For those stricken with PF, the lungs become scarred to the point that they can no longer make the necessary blood-oxygen exchange necessary for to breathe and eventually causes patients to suffocate.
50 percent of Mary Kay products sold using this code: LIPSFORACURE through the website link: www.marykay.com/kmeyers will go to the Coalition for Pulmonary Fibrosis, a 501(c)3 non-profit foundation, to help find a cure for PF and to support patients and families. To order Mary Kay products through this promotion, visit www.marykay.com/kmeyers and type in the code: LIPSFORACURE in the comments section of your order form.  To place a phone order, contact Kim Meyers at (703) 200-8462.
To learn more about Pulmonary Fibrosis, visit www.coalitionforpf.org.

Thursday, December 22, 2011

Sunshine Soon


Ever since I lost sixty pounds earlier this year, I have been cold. Instead of my usual avoidance of heat, I have searched it out and reveled in it. As winter nights bring the cold, I have been craving warmth.

Dreaming of Palm Springs, we realized that it was too expensive this time of year so we were considering a trip to Southern California to drive along Highway 1 from Mexico to our home sometime in January. Then the phone rang last evening. It was Sue from our book club. We had the fancy dinner at the Ritz hosted by them a couple of weeks ago at which I mentioned our trip in January.

Sue and Jim phoned from the pool at another of their time shares in Hawaii. They decided to give us one of their weeks at their Palm Desert (near Palm Springs) time share to be used in January as a gift. We were shocked and thrilled. A whole week of sunshine.

Sue wanted to know what dates we are available so she could book it for us. We will get the confirmation in a few days.

What friends. What a gift.

Wednesday, December 21, 2011

Speech, ah, Maybe


Sally, the head of our ILD Support Group, phoned last evening. My university hospital is going to host the American Thoracic Society's Annual Meeting in May. One of the offerings will be about my specific disease - Hypersensitivity Pneumonitis - and they have asked if my university could provide a speaker with the disease to present to the group.

TA-DA! Me!!!

I am honored to be asked to speak. It is a huge deal. I immediately said I would be happy to do it. Someone from the ATS will be contacting me with specific topics of interest which, I am rather sure, will include; my symptoms, how I was diagnosed, my PFTs, causation, current status. I will also try to talk a bit of my obsession with eating non-processed foods and the importance of consistent daily exercise.

But, and this is a big but, my niece is getting married on the same day. In the late afternoon. About three hours away. Sally is trying to contact the coordinator for the event to ask if they can schedule my speech before noon. If not, I can't do it.

Fingers crossed that it all works out. I love speaking, especially to doctors.

Tuesday, December 20, 2011

Countdown to Christmas


Mornings. Our favorite time of the day. The outside Christmas lights are on, both trees are lit, the coffee is Peet's Holiday Blend, the heater is running full speed, the sky is beginning to lighten up creating dark silhouettes of the mountains and trees in the distance. It is mild. No wind.

Breakfast is beginning. Chicken breakfast sausage with vegetables for me.

Oh, and we woke up watching all the coverage about the 49er's win last night.

All in all, life is good.

Making plans for today - buying one last present for William this morning, searching for dried porcini mushrooms, going to the final rehab class before Christmas then presenting gift cards and sugar glazed walnuts to the staff. Afterwards, I am going to hit my files and get all the paperwork in order. Ugh.

Countdown to Christmas.

Monday, December 19, 2011

Busy Sunday-Busier Monday

 The performance went well. There was a nice audience for the entire hour listening to the young violin students and a few of us ringers thrown in for a bit of stability. My bass just loved the acoustics and I had to pull back a bit as I was overwhelming all the violins.

Afterwards, Michael and I drove over the pass and headed for the big mall to shop for ourselves. I found my leather coat and silver necklace and Michael bought his six pairs of Levi 501s. We also bought some very expensive mugs and pot holders at Williams Sonoma. Earlier, I found some gorgeous marble kosher salt and pepper bowls for William. They will be ready for pick up on Tuesday.

We ate two quick appetizers at Max’s Opera CafĂ© before heading into the hills towards our wonderful Bella Vista with the huge fireplace and friendly people. Rats! It was closed for a private party so we drove back down the mountain to our home.

We were both tired. It had been a long week.

This morning, we are going to finish our shopping together at Best Buy then I am going to the other rehab, the butcher and Trader Joe’s. Afterwards, I have to write some cards and make three pounds of Sugar Glazed Walnuts for the rehab class RN and Exercise Physiologists for our class on Tuesday.

As of today, all the groceries and gifts will be in the house and ready to go. All the cooking ingredients are ready and waiting. It is going to be a busy week. In order to manage it all, I have lists of things to do. My strategy: a little bit every day spread out through the week. I don't want to get run down and sick for the holidays!

Sunday, December 18, 2011

Final Christmas Shopping

Robert Concha's Christmas Madness
Gardens? Done.

Christmas Shopping? Not.

After five hours working under a warm sun, the gardens are ready for the holidays. Everything is cut and trimmed. Ready. We sat in our Adirondack chairs watching the sunset and feeling the increasing cold trying to seep into our bones.

After dinner, we went for a walk and ran into the other orchestra bass player and her husband. We stood in the freezing cold just having a grand chat. Such nice people. Our little street had the most Christmas lights on display and it felt so festive to see them all. But, nigher of us were able to get warm until bedtime. Really bone-chilling cold.

The holiday music performance with the young violin students is this afternoon. Afterwards, Michael and I are meeting at the house then heading to a huge mall for the duration - how ever long it takes us to finish Christmas shopping. The stores are opened until midnight! We need just one more thing for William. Something...

My mom gives each of us $350.00 every year, we buy what we want, wrap it up then open it in front of her. In our house, the negotiations begin early. An example: our ancient carousel CD player has finally stopped working. We are each going in halves to replace it as one of the presents. As we both use them, we are also chipping in halves for pot holders. Hilarious. His shopping goal is a lot of Levi's and mine is a brown leather jacket and a silver necklace.

We were hoping to maybe swing by the place we had our anniversary and birthday appetizers in front of the cozy fireplace high in the mountain surrounded by redwoods. It will be our reward for finishing all of our shopping.

The madness begins on Monday. After rehab, I'll food shop then home to make three pounds of Sugar Glazed Walnuts for the rehab class staff along with Amazon gift certificates. Busy week of cooking ahead. I also need to make two more pounds of walnuts for Mom and her friend Peg, Rice Krispie Bars dipped in chocolate for the three housekeepers, baklava for William with leftovers going to George (Michael's shop neighbor) and our five neighbors along with Lemon and Pumpkin Gingerbread Cake Balls. William and Kimberly are also getting some of the cake balls.

Let the cooking begin!

Saturday, December 17, 2011

What is Love?

Stephanie and her beloved Mr. Nielson
I read my special blogs every morning. One I never miss and have blogged about is NieNie Dialogues. http://nieniedialogues.blogspot.com/ NieNie is the woman who, with her husband, barely survived a small airplane crash. Most of her body was burned and it is nothing short of a miracle that she is alive, raising her four children and is now pregnant with her fifth. Their 11th anniversary was yesterday and she shared the quote below. It struck a chord in my heart. It is beautifully said. I pass it along to you.

Love is a temporary madness. It erupts like an earthquake and then subsides. And when it subsides you have to make a decision. You have to work out whether your roots have become so entwined together that it is inconceivable that you should ever part. Because this is what love is. Love is not breathlessness, it is not excitement, it is not the promulgation of promises of eternal passion. That is just being "in love" which any of us can convince ourselves we are.
Love itself is what is left over when being in love has burned away, and this is both an art and a fortunate accident. Your mother and I had it, we had roots that grew towards each other underground, and when all the pretty blossom had fallen from our branches we found that we were one tree and not two.
Louis De Bernieres

Friday, December 16, 2011

The "Face" of Pulmonary Fibrosis

I received this e-mail from the wonderful people of the Coalition for Pulmonary Fibrosis. It is so important to have a “face” out in the public to represent this horrible disease. Thank you to Rose McGowan for stepping forward to being that person speaking about the disease.
Lots of information below:
We are honored to inform you that actress Rose McGowan is the new ambassador for the Coalition for Pulmonary Fibrosis (CPF) and is the new honorary chair of the CPF's new Daughters of PF Program.  She understands first hand the struggle that patients and families face with PF - she lost her own father to the disease.  She is now joining forces with the CPF to raise awareness of the disease and to help attract much-needed media attention for PF.  She'll post live on Facebook tomorrow  (Friday, December 16th) about her effort- don't miss it (see below for details)!
Tomorrow, December 16th,  Rose will post a message live to her Facebook page about her efforts to raise awareness of PF!  She will post at 9:00 AM Pacific Standard Time (10 AM Mountain, 11 AM Central, 12 noon Eastern).  You may join her site at this link:  http://www.facebook.com/RoseMcGowan.  Make sure to "Like" her page and like the CPF's Facebook page, too: http://www.facebook.com/pages/Coalition-for-Pulmonary-Fibrosis/59376930052 and share this email with your friends and family to spread the word about Rose's involvement in PF!
Read the full press release regarding Rose's new role with the CPF and the fight against PF below.
Happy Holidays!
Mishka Michon, CPF Chief Executive Officer
ACTRESS ROSE MCGOWAN NAMED AMBASSADOR FOR COALITION FOR PULMONARY FIBROSIS IN FIGHT AGAINST DISEASE THAT CLAIMED HER FATHER’S LIFE
Actress to Lead New Awareness Campaign, Chair CPF’s Daughters of PF program
Hollywood, CA – December 15, 2011/ - Motion Picture and television actress Rose McGowan, perhaps best known for her roles on TV’s long-running, Charmed, and the 2011 motion picture, Conan the Barbarian, among others, is taking a lead role in a profound real life drama.  In 2009, she lost her father, artist Daniel McGowan, to Pulmonary Fibrosis (PF), an incurable lung disease that has no cure and no FDA-approved treatments, and which kills more than 40,000 Americans each year…as many as breast cancer.  She’s now taking a lead role to build awareness to fight the disease and working with the Coalition for Pulmonary Fibrosis (CPF).
On Friday, December 16th, McGowan will post a message about her work with the CPF and the need for increased awareness for PF on her Facebook page.  The post will be live at 9:00 a.m. Pacific Standard Time at http://www.facebook.com/RoseMcGowan.  
As CPF’s Ambassador and Chair of The Daughters of PF campaign, a new program of the CPF, a 501C3 non-profit foundation, McGowan plans to help generate wide public awareness about PF, which has thus far been little known to the broad U.S. public. In so doing, she intends to use her celebrity to shine a spotlight on PF, much as other prominent individuals have done for diseases such as AIDS, breast cancer, Parkinson’s, and others.  
For those stricken with PF, the lungs become scarred to the point that they can no longer make the necessary blood-oxygen exchange necessary for to breathe and eventually causes patients to suffocate.  Currently there is no PF treatment approved by the Federal Drug Admisnistration (FDA) and there is no cure. McGowan, having witnessed personally the cruelty of the disease, has committed to taking a prominent role in the national effort to fight PF.
 “Pulmonary Fibrosis is a horrible, horrible way to go.  It makes me quite angry that not a lot of people know about it.  I want to help change that,” said Rose McGowan. 
“We are honored that Rose is taking on this cause and helping give patients and families a voice in fighting this horrible disease,” said Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis.  “Because she has been directly affected by PF through her father’s illness and death, she has a unique perspective and personally understands the plight of patients and their families.  Her efforts will contribute to forever changing the landscape for this little known killer disease, and her celebrity, talent, and energy will serve to not only build needed awareness of the disease, but it will also help lead to developing successful treatments and eventually a cure.” 
As the Chair of the Daughters of PF and an Ambassador for the CPF, McGowan will help raise public awareness of the disease by speaking out and doing media interviews, attending or hosting public events, and interacting with PF sufferers and their families, including via social media. The Daughters of PF program inspires daughters and other family members to turn their grief and pain into action by holding awareness and fundraising efforts in their local areas.  To learn more about Daughters of PF, visit www.coalitionforpf.org or their Facebook page.   
McGowan starred as Paige Matthews in Charmed and starred in the movie Conan the Barbarian.  She has the lead role as Mary Winkler in the upcoming made-for-TV movie, The Pastor’s Wife.  She also stars in a new film, Rosewood Lane.

About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.  Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About Daughters of PF
In 2011, the Coalition for Pulmonary Fibrosis launched a new effort inspired by the tens of thousands of daughters (and others) who have seen a parent suffer from PF.  The women involved in Daughters of PF are professional women in various fields and specialties including legal, medical, and educational.  The women are creating projects across the country and in their local areas to increase awareness and understanding of PF and also holding fundraisers to raise needed money for research and patient support services.  Their efforts are reflective of their interests and talents and will allow them to make a difference right where they are.  For more information, contact the CPF at daughters@coalitionforpf.org or call 1-888-222-8541, ext. 702.  
About the CPF
The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 23,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.

Thursday, December 15, 2011

December ILD Meeting Part 2

Integrative Medicine. Something I have been avoiding. I wanted to deal with my physical illness then hopefully; I would be strong enough to deal with the emotional burdens of having a chronic illness. And a fatal one at that. Maybe, at last, it is time to seek help for that part of this journey.

Dr. Kevin Barrows came to the ILD Support group to tell us all what the Osher Center for Integrative Medicine offers. He said they offer a dynamic approach to health, healing and prevention by integrating modern medicine with established health practices from around the world.

Their mission statement is “to transform the way medicine is practiced by conducting rigorous research on integrative approaches to health; educating students, health professional, and the community; and treating patients with compassionate care that addresses all aspects of health and wellness-physical, psychological, social and spiritual.”

I have written the below from my notes from the meeting but have also used language from their brochure. Their Integrative Medicine Services include all professionally guided and personally oriented goals:

Integrative Medicine Consultation
An approach that includes multiple aspects of health and lifestyle.

Acupuncture and Traditional Chinese Medicine
Offers a set of recommendations that combines a range of therapies, providing a holistic approach and an integrated treatment plan.

Integrative Women’s Health
Offers a range of options such as herbs, supplements, nutrition and mind-body methods for managing health concerns including menopause, sexual concerns and others.

Integrative Cancer Care
Recommendations that combine a range of therapies providing a holistic treatment plan.

Integrative Psychiatry and Psychotherapy
Nurtures the spirit, focus on emotional wellness, and address life challenges, such as physical injury, interpersonal loss or chronic illness. (HELLO!)

Biofeedback
Helps to regain a level of relaxed awareness amidst stress and to become more aware of stress-responses. Created for the individual, each includes relaxation training, guided imagery and other therapies.

Guided Imagery
Using the imaginative capacity of the mind to improve physical, emotional or spiritual health, enhances peace of mind or prepare for surgery or other medical procedures.

Manuel Medicine/Spinal Manipulation
A diagnosis and treatment of reversible functional problems of the musculoskeletal system (muscles and joints) with particular attention to the spine. Other Techniques and hands-on therapies include: osteopathy, chiropractic therapy, physical therapy, and breathwork techniques.

Therapeutic Massage
Personal massage that combines techniques best suited to address specific needs. Some of the styles offered are Swedish, Esalen, Deep Tissue, Pre-Natal, Acupressure, Shiatsu, Craniosacral, Reflexology, Orthobionomy and Counterstrain.

Ayurveda Consultation
            Means “The Science of Life” has been practiced in India for more than 5,000 years. Helps to learn how to optimize well-being through careful attention to your lifestyle choices.

They also offer group programs, which emphasize prevention using modern medicine with established practices from around the work to bring complete healthcare to all people.

Here are some examples:

Mindfulness-Programs
            Mindfulness-Based Stress Reduction
            Mindfulness-Based Childbirth and parenting
            The Mind I Labor: Working with Pain in Childbirth

Movement and Healthy Living
            Tai Chi Chuan
            Therapeutic Yoga           
            Laughter Yoga
            Ayurveda

Cancer Care
            Meditation and Guided Imagery for People with Cancer and Caregivers
            Spirituality and Cancer: Tapping into the Deeper Dimensions of Healing

Surgery Care
            Preparing for Surgery

What is so cool is that they can put a whole package together for my specific needs for a yearlong plan. It is a bundled service for which they offer a 30% discount. I could also do everything I require in one day a week during a six-hour visit. I don’t think I have the focus or energy for that.

Dr. Barrows took us through a Mindfulness Meditation exercise where we sat in our chairs, eyes closed and focused on our breathing. Specifically, we focused on our bellies. How was our breathing? Was there a pause between every few breaths? He said that some believe that no two breaths are alike. Very interesting. Then he mentioned that our minds would begin to wander but bring it back to the belly.

I found it rather amusing how quickly my mind would wander. I also realized how quickly I could bring the focus back to my breathing and my belly. Focus. Mindfulness. Being aware. Mindfulness is the only goal and is not require to relax. It can be practiced anywhere. Being aware. Being mindful.

At the end of the too quick session, he asked us, “In what way are you presently using your mind to help yourself?”

So, dear reader, how would you answer that question?

Wednesday, December 14, 2011

December ILD Meeting - Part 1

It was a busy day yesterday. I met Susan for lunch at Park Chow before our ILD Support Group meeting. We never had a quiet moment and shared lots of information. While we were finishing up, a group of men sat near us and one of them wore some strong aftershave which was wafting towards Susan. Her lungs began to protest and she was really struggling to breathe. Funny how people just don't understand how so many of us cannot be around any aromas at all. We left.

When the other rehab was in the old hospital, I used to have to ride an elevator to the gym. Often, I would be gasping for air because of strong aromas in the small space. I even got good at recognizing deodorant brands! The aromas could be so strong that I could taste them.

Susan and I met again on the university hospital campus for the ILD Support Group meeting. There was a cookie exchange and the atmosphere was very festive. While waiting for the speaker, we had a active conversation regarding the holidays, helpful or too pushy relatives and many other issues. The head of the group, Sally, had been contacted by hospitals from all over the world regarding our ILD Support Group. Others want the model for their programs. Sally has been invited to the famous ILD Clinic in Italy and invited us to go along. Oh, how I wish I could fly!

I did learn something big that I wish to pass along. People in the group were talking about unneeded or unwanted advice from well meaning people. The shoulds...."You should get someone to live with you to help" or "You should move." One woman in the group said that she manages these people by saying, "Maybe you're right."

Maybe you're right. So simple. So noncommittal. No arguments. No explanations. So perfect.

I need to practice that phrase.

After explaining this to Michael last night, I suggested that he might borrow this phrase for his business situation when people tell him what he needs to do. You guessed it. A second passed when he said to me, "Maybe you're right."

We had a good laugh.

I will write up my notes for tomorrow's blog about integrated medicine with Dr. Kevin Barrows' presentation from yesterday's ILD meeting.

Tuesday, December 13, 2011

Positive Changes

It happened yesterday. It happened for a while before I noticed it. It had been years. Many years.

I was up early to UPS the Christmas packages to the relatives then had a great workout at the other rehab. After the butcher, I parked and was walking through the parking lot and across a street to the Trader Joe's. It was there that I noticed.

I was walking at the fastest pace I have walked since I have been sick. Always a fast walker, after becoming ill I had to slow down to adjust for the illness. But, yesterday I felt like I was back to normal for the first time since 2004. It was thrilling. Looking back on the day, I realized then that the entire day was different: I was able to talk while on the treadmill, I had no problems carrying the bags of presents into the UPS store, I had almost run into the butcher shop and finally the full jog across the street to Trader Joe's. All with no sign of shortness of breath.

What is happening to my lungs?

Monday, December 12, 2011

...And Another

Christmas Party #2 - Done.

We were invited with two couples from our book club to an amazing dinner and dancing in the Ritz Carlton's ballroom. The music was excellent and quiet enough for conversation before and during dinner but it really ripped during dessert. They got that place hopping. We had fun watching at all the fancy-dressed people dancing as if it was 1984. Or maybe 1964.

Men in tuxedos and women in beautiful dresses with lots of diamonds were on display. So different from the Christmas Party #2. I broke out my new black Calvin Klein dress with my cool black shoes, a dramatic turquoise necklace Betty made for me and lots of silver jewelery along with a turquoise cashmere wrap. Michael looked handsome in a Christmas tie and muted green sport coat and slacks.

We loved being at both weekend parties.

The food? It began with free punch, egg nog and champagne. There was also a bar available. Everyone gathered along the foyer enjoying conversations when the doors opened to the beautifully lit and decorated ballroom. There were 215 people present, a band and a very large dance floor. The party is hosted by the Ritz every year to thank the people who live on the golf course next to the hotel. We don't but the book club leader does.

Back to the food. After comments, the buffet was opened. There were twin buffets on either side of the ballroom. It started with beautiful shrimp with all the sauces available, sushi, lobster bisque, several salad, beet salad, curried carrots with watercress and grapes, risotto, potatoes, dressing, the best brussel sprouts, cod with veggies, prime rib and maple smoked turkey and other things I just can't remember. All the sauces and accompaniments were available.

Dessert and coffee was served in the foyer area while people were dancing the night away.

We did really well again with our choices and amount of food we ate. Still, I feel like we ate a lot of rich food this weekend and so looking forward to returning to my regular food routines.

Also this weekend, I wrapped all the presents ready to be ship this morning before I buy the week's groceries after I go to rehab. Busy day ahead.

Sunday, December 11, 2011

Weekend Christmas Parties!

The restaurant steps from the ocean.
Weekend Christmas party #1 - Done. Weekend Christmas party #2 - Tonight.

Last night, we drove up the coast to a beautiful restaurant right on the water where the waves were lit by a huge light. The working crab boats could be seen in the distance. It was cold. It was stunning.

Michael's friend Jim with his wife Kathy invited us to their company Christmas party at this restaurant owned by their long-time friend Chuck. We were just at Chuck house earlier in the week which was on 385 acres and featured a real log cabin. A huge log cabin and decks and a swimming pool and horses and cattle. Nice spread.

The dinner last night was also a nice spread! It began with appetizers of strips of tender steak, perfectly cooked calamari steaks, olives and the best fried huge shrimp. Massive quantities. Next came a delicious salad perfectly dressed along with garlic bread with massive amounts of chopped garlic on top then came the crab. Platters of fresh Dungeness crab. This crab was served cold completely infused with garlic and parsley. Lots of garlic. Burn-in-your-mouth garlic. After the crab, came the main course. There was choice of steak and lobster (huge!), Prime Rib (also huge), Chicken Cordon Bleu or halibut. Michael had the Prime Rib and I had the halibut. I couldn't finish it. It was delicious.

My diet? I was very careful and feel good this morning. But, I feel that I stink of garlic within 20 paces! The problem? We have Party #2 tonight! They are going to smell us coming.

Today, I am going to work just a bit in the garden then wrap presents then make some baklava for one of my brother's presents all for shipping tomorrow. Christmas party #2 begins tonight at 6:00 at the Ritz. Fancy.

Saturday, December 10, 2011

IPF Summit 2011

Thanks to Susan and the ILD Support Group who e-mailed this information regarding the idiopathic pulmonary fibrosis summit. Here is her e-mail:

In case you missed the live webcast of the patient portion of the IPF Summit, videos of the program can be viewed at: http://www.ipfsummit2011.com/

***************************************************

Pulmonary fibrosis foundation's inaugural ipf summit receives high accolades from pulmonary fibrosis community


IPF Summit 2013 to be Held December 5-7, 2013

CHICAGO, December 6, 2011 /PRNewswire/ -- The Pulmonary Fibrosis Foundation's (PFF) inaugural conference on idiopathic pulmonary fibrosis (IPF), IPF Summit 2011: From Bench to Bedside, was recently held in Chicago. The event brought together medical professionals, patients, and caregivers for an innovative two-day meeting. Gregory P. Cosgrove, MD, IPF Summit 2011 Faculty Member and PFF Medical Advisory Board Member commented on the importance of the event: "The Summit was truly exceptional in bringing together the medical, scientific, and patient communities to learn and collaborate in a mutually beneficial environment."
The IPF Summit 2011 was presented by the PFF in partnership with National Jewish Health and The France Foundation and endorsed by the American Thoracic Society. Forty-four presentations were conducted by preeminent professionals in the field of pulmonary fibrosis. Kevin K. Brown, MD, IPF Summit 2011 Program Chair and Chair of the PFF Medical Advisory Board, described the conference: "The IPF Summit is the first meeting of its kind to bring together both the scientific and clinical medical communities dedicated to treating, and one day curing, idiopathic pulmonary fibrosis. Dedicating significant portions of the program to the needs of patients and caregivers highlights the Foundation's desire for the Summit to be a resource for the entire pulmonary fibrosis community."
The IPF Summit 2011 was held before a sold out audience that included 244 medical professionals and 127 patients/caregivers. There were attendees from 36 states and 14 countries. In order to provide the information to individuals who could not attend the conference, there was a live webcast of the patient/caregiver sessions. Almost 600 viewers watched the webcast including an international audience representing nine different countries. Additionally, 225 people attended group satellite feeds of the Summit at ten national and three international locations. The entire conference, including the physician sessions, will be available on-demand at the Foundation's website in January 2012.
The Summit emphasized the importance of new research; twenty-six young academic investigators were chosen to give poster presentations on their basic, clinical, translational, or social science/quality of life research. All submissions were peer-reviewed and graded; awards were given to the first, second, and third place posters. Their research presented original ideas that will help improve the understanding of pulmonary fibrosis.
"The Summit was an important milestone for the PFF and launches the next stage of the Foundation's role as a resource and catalyst for the PF community," stated Daniel M. Rose, MD, President and Chief Executive Officer at the PFF. "We would like to thank all of the people who have helped to support the PFF including our individual and corporate donors, volunteer fundraisers, and Foundation sponsors." Sponsors include: The Bean Family; Boehringer Ingelheim Pharmaceuticals, Inc.; Bristol-Myers Squibb; Booz Allen Hamilton; Coalition for Pulmonary Fibrosis; Phyllis N. Demont; Jennifer A. Galvin, MD; Mr. and Mrs. Thomas E. Hales; Hogan Lovells; ImmuneWorks; InterMune; JP's Peace, Love & Happiness Foundation; Jenny H. Krauss and Otto F. Krauss Charitable Foundation Trust; Chuck Lawless / The Lawless Team, Mesirow Financial; Lincare; Mr. and Mrs. Charles P. McQuaid; Julia Willis O' Connor; Pacific Northwest Friends of the Pulmonary Fibrosis Foundation; Promedior; ProVideo; REI; Mrs. Selma Rose; Stromedix; and Tighe Logistics Group.
The PFF announced that the dates of its IPF Summit 2013 will be December 5-7, 2013. To pre-register, please contact the PFF at summit@pulmonaryfibrosis.org or 888.733.6741. To learn about sponsorship opportunities, please contact Cara Schillinger at cschilllinger@pulmonaryfibrosis.org or 312.265.2184.

Friday, December 9, 2011

Walking Fools

We did it. Last night, we put on layers of clothing and a bit after a light dinner, we hit the streets. Literally. Michael loved his new running shoes and wrapped himself in four layers of clothing while I looked sassy with only three layers but had knit gloves. White gloves. In our neighborhood, there are no sidewalks and no parking is allowed on the streets. So, walking at night can be a bit dicey. When a car tried to pass us, Michael would say, "Jazz hands!" and I would move my white gloves so the car could see us. Made us laugh.

The complex is set up in circles and a few cul de sacs. We hit every only of them, looked at all the Christmas lights and made it back home in 45 minutes. I showed Michael the cool down stretches for his legs so he wouldn't be sore this morning.

We had fun.

This weekend, we plan to walk along the ocean in the daylight. I have a feeling we will walk about an hour. It is so beautiful, crisp and clear this time of year.

Today, Christmas shopping begins after rehab. I want to get Michael's mom's presents and my brother and sister-in-law's presents in the mail on Monday. They are the only ones that need to be shipped. As a special treat, I am making and sending some Baklava to my brother. He loves it so much.

Thursday, December 8, 2011

Christmas Lights of Love


 This is what I came home to after the orchestra rehearsal last night. Michael surprised me. The Christmas lights were up and shining brightly. What a thrill to turn the corner onto our street and see the lights shining. Almost brought tears to my eyes.

He planned it all. After I left at 7:00, he worked until 9:00 to get them all up and working. He even put the red light bulbs in the side lamps near the garage. The front door lights were up as well as poinsettia garlands on the window boxes. He did it all. In 42 degree weather.

That, my friends, is love.

He did mention that he had an eggnog with a little "warmth" in it to keep the chill away. HA!

Wednesday, December 7, 2011

Upcoming December ILD Support Group Focus


The December ILD Support is going to meet next Tuesday. Dr. Kevin Barrows, an integrative medicine physician and director of clinical programs, including mindfulness programs is booked to talk with us about Mindfulness-Based Stress Reduction. 

As part of the season's celebration, the head of the group also arranged a cookie exchange. I am still deciding what to make to share.

Susan and I have planned to meet for lunch at Park Chow before the meeting. She has taken classes through the Osher Center for Integrative Medicine and meditates daily. It has helped her with living in the present and not have the panic feelings I sometimes get during the night when I think about the future. She is so calm and so focused and I really admire that about her.

My long ago class learning a combination of imaging, tai-chi, yoga and other relaxation techniques failed. It's not that I really didn't enjoy the classes at the rehab hospital over the hill, it was that the classes were from 3:30-5:00PM. Rush hour. I would rush out to get onto the pass then sit in a lot of slow moving traffic and then have a frustrating trip home. The coup de gras was when the road itself was closed due to an accident and I sat in my car for over an hour in the cold waiting for it to reopen. The calm, relaxed person was arriving home tense and out of sorts. I never went back after that. But, I did learn some techniques that I still used when I really can't sleep. 

I am looking forward to going though some of the techniques with Dr. Barrows during the meeting. Maybe it is time to return to working on this part of living with a bad diagnosis. There are fantastic places in town right on the ocean which offer classes in meditation and yoga, both good for those of us with lung diseases.

Tuesday, December 6, 2011

Hit the Trail

Past of the Coastside Trail where we will be spending a lot of time. 
Happy. Thrilled. After many years, Michael has announced that he wants to begin taking walks again. Before I was ill, we used to walk for hours on Sundays. We would walk into town for breakfast then wonder through town then a long walk along the ocean to our home.

I loved to walk with him. He would tell such good stories about people he had dealt with through the week. We would talk about the week ahead. We would come home feeling healthy and strong.

During our Thanksgiving buffet, we were seated up a flight a stairs above the masses below. He noticed that his knees were a bit sore the next day from going up and down several times while carrying a plate of food! Hopefully, these walks will help strengthen his thigh muscles to support his knees a bit better. They normally don't bother him.

Last Sunday, we bought some new running shoes for him and made our plans: 30 minutes, 3 days a week before dinner. It is a start. We will do this until the end of the year then I will work it up to an hour. After a few months at this rate, I will talk him into adding another day. He will feel healthy and strong again, especially his knees. And fit.

And, it will help with my goal to lose six pounds, too.

Monday, December 5, 2011

Donuts for Windows

Dynamo Donuts famous apple filled donut
with maple glaze and bacon
A pre-reward. A bribe. Donuts. We got up early Sunday and drove into the city to Dynamo Donuts for donuts that cost $3.50/each and totally worth every cent. Michael had three: passion fruit with little milk chocolate bits, coconut custard and ginger orange. All made with fresh fruit. No artificial flavors. Totally light and delicious. They even threw in a free cup of tea for me because I explained that I was just watching and couldn't enjoy one. Nice people.

I should probably mention here that Michael is a thin man who's blood test results are all perfect. My mom says that these results are proof that he is perfect, something she has always claimed. Ha!

The donuts were a bribe for Michael to wash the inside and outside of all the windows. We have a lot of windows! I just can't do them. He even washed the huge living room windows which are high in the pitch of the roof. It was a lot of work. He also cleaned all the screens and the tracks of the sliding glass doors. A good job. It had been a year since they were last cleaned.

The plan was also to hang the Christmas lights outside but, alas, that didn't happen. Instead, he watched the last quarter of the 49er game then we went to the open house for sale just behind us. They have been doing major work for about six weeks and we wanted to see the results. It was just like a TV show. Everything had been replaced and it looked fantastic. We hope they get the price they are asking. We also hope a nice quiet family moves in.

Dinner was the fantastically fresh and delicious red snapper we bought at the harbor on Saturday while buying our first crab of the season. Leftovers tonight.

I have a very quiet day planned. Rehab this morning and not much else. After the first of the year, we are thinking of a vacation along the California coast to visit all the piers from just north of Mexico to our home. That is going to take some research. The planning begins!

Sunday, December 4, 2011

Post-Thanksgiving Feast Weigh-In

I haven’t blogged about my weight for a while. When I was at the Liver Clinic last Thursday, it was the first time I had stepped on a scale since Thanksgiving. Shockingly, I had lost a pound. I am still lighter than when the diet ended in July. By several pounds.

My expectations of not checking in with the weight management clinic or having someone looking over my shoulder was that it was going to be very difficult to maintain my weight. Actually, that has not been the case. I need to keep all my good routines in place – create a week's worth of menus so there are no choices to make when I am hungry, exercise, drink lots of water, no snacking – and the rest will follow.

My sister is struggling with her weight. She went on a diet advertised on TV, lost a lot of weight but began to put it back on while on a trip to Italy. She was never able to get the momentum back after the vacation thus the weight just piled back on. Her daughter is being married in May and I know my sister REALLY wants the weight gone. She doesn’t talk about it with me but our mom has encouraged her to see a nutritionist who can help her lose it safely. No fads. For life. I so hope she can do it. Their lifestyle is so different from ours – they eat a large dinner at 7:00PM and go to bed at 9:00, eat out several nights a week and enjoy lots of wine, which is so caloric. It is going to have to be a major change to their lifestyle for any diet to work and to live with for the rest of their lives.

So, I am feeling my weight is stable. It goes up a pound then down a pound. I really wish to be about six pounds lighter so that is my goal for the New Year. That almost makes me giggle. Six pounds. Recently, I have been reflecting back to last year at this time when I was struggling with the extra sixty pounds. I had my first appointment with the nutritionist on December 23rd. It was the beginning of an amazing journey of weight loss. It has been one heck of a year.

Saturday, December 3, 2011

Life Goes On and It Is Good

After my appointment in the Liver Clinic on Thursday, I played hooky from the rehab class and I headed back down the coast to met Natalie, Winnie and Oliver for lunch near their home. It was a real restaurant with real napkins, which overlooked the ocean. I asked Winnie what she was going to order and she said, "Oh, I always get the hot dogs here. They are very good,” in a tone normally used when discussing fine wines or rare cheeses. We ordered and I got such a kick out of Winnie ordering her lunch. She waited until Natalie and I were finished then said to the waitress, "Hello. May I order the hot dog and a child's water, please?" No shyness. Just very polite. 

Before meeting them, I stopped to buy some very good gingerbread cookies with not much sugar and a very small amount of icing. As Oliver began to complain a bit about going into the high chair, I whipped out the cookies and smiles appeared all around. He only needed one as I distracted him by showing him how to shake the raw sugar packets to make noise. He was entranced. That kept him very busy. Clearly these kids have been to lots of restaurants. There was no loud talking, no running around, no problems. I helped feed Oliver some yogurt so Natalie could finish her lunch and we bonded once again. I got many smiles and laughs and giggles from him. Afterwards, we took a walk to the hotel nearby and saw all of their numerous Christmas trees where he exclaimed in front of each one, "Wow!" It was so much fun for me to watch.

Great day.

I arrived home to the second day of very heavy winds. The trees are now void of their foliage. Everything is very dry. I have a long day of work ahead of me. After rehab yesterday, I swept up the big piles of leaves and tree branches. This morning, the plan is to cut the grass then water everything really well. We also have friends coming later this afternoon. Going to be a nice weekend!

Friday, December 2, 2011

Liver Report

I had an interesting day yesterday. The traffic was horrific heading into the city for my liver clinic appointment to learn the results of many blood tests and my recent liver sonogram. But I was still early, of course. I also dressed up and arrived about 20 pounds lighter since I last darkened their doorway.

After I lost the first ten pounds at the beginning of the diet last January, I bought a pair of black shoes with very high heals as a reward. They have a herringbone texture on them and little satin bows. I arrived wearing a Faconnable shirt over a black pencil skirt with black tights and these shoes. The tech came into the waiting room to collect me and he said, "Cool shoes!" Every doctor I have seen while wearing these shoes have said the same thing. They are cool. The photo does not do them justice!

The liver report? The lab numbers regarding the liver function are all within the normal range. Thankfully. The bad news? The liver is still the same size, even though I have lost a lot of weight. It still must be monitored because there might be a biopsy in my future. For now, it is wait and watch. Again, it is due to medications not making my liver very happy.

The bad news: My cholesterol levels are high even though I eat and have eaten well. He sent me back to my endocrinologist - Dr. M. - to discuss possible medication and for it to be monitored.

So, I took my cool shoes to the clinic building and up five floors to make an appointment with Dr. M. He just happened to appear and told them to book an appointment for me whenever I wanted. Make room for me. Love that. Dr. M. was one of my parents at the school. He is one proud dad as his daughter just began attending Stanford in September. I have known her since she was a kindergartner. Time does fly.

From there, my shoes took me to the other end of the long hallway to the Lung Clinic where Dr. K. had a letter waiting to excuse me from jury duty. I also made an appointment to see her in March. While there, one of the Rn's stopped me to comment on my cool shoes. I swear, they really are cool.

All in all, not really bad news. Could be worse.

Thursday, December 1, 2011

The Pulmonary Fibrosis Research Enhancement Act

I received this e-mail from the wonderful people at the Coalition for Pulmonary Fibrosis. Please, click below for a message to be sent to the people who represent you in Washington D.C. Thank you!

Tough Times call for Loud Voices!  The Pulmonary Fibrosis Research Enhancement Act (PFREA) is gaining momentum despite tough times on Capitol Hill and the threats of major cuts to healthcare.  We need your voice now, more than ever, to help get the bill passed and move forward to find treatments and a cure! 
Call, email or mail your Member of the House of Representatives AND the U.S. Senate NOW and ask them to sign onto H.R. 2505 (House) S. 1350 (Senate)!  See the full list of current co-sponsors (a list that's growing fast) to see if your Members are on board.  Also, and very importantly, please ASK your friends and family to do the same!!  The louder our voices (and more of them), the more likely Congress is to pass the bill that will create the first National Patient Registry in PF to help pave the way for treatments and a cure - NOW - not "some day"!  Click here to send a message to your Member of Congress AND Senators now!
Let YOUR member of Congress and YOUR Senators know why YOU care about the PFREA and about your personal connection to the disease.  YOUR member wants to hear that YOU - a constituent - care about this bill!!
Thank you for your effort,
Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis
U.S. House of Representatives Co-Sponsors (State, District, Date signed on):

Rep Altmire, Jason [PA-4] - 10/25/2011
Rep Baldwin, Tammy [WI-2] - 7/12/2011
Rep Boren, Dan [OK-2] - 11/14/2011
Rep Burgess, Michael C. [TX-26] - 9/22/2011
Rep Butterfield, G. K. [NC-1] - 7/27/2011
Rep Cohen, Steve [TN-9] - 7/20/2011
Rep Connolly, Gerald E. "Gerry" [VA-11] - 10/14/2011
Rep Courtney, Joe [CT-2] - 9/9/2011
Rep Davis, Danny K. [IL-7] - 11/16/2011
Rep Dicks, Norman D. [WA-6] - 7/26/2011
Rep Edwards, Donna F. [MD-4] - 10/25/2011
Rep Ellison, Keith [MN-5] - 11/1/2011
Rep Emerson, Jo Ann [MO-8] - 10/14/2011
Rep Faleomavaega, Eni F.H. [AS] - 9/14/2011
Rep Frank, Barney [MA-4] - 7/26/2011
Rep Gallegly, Elton [CA-24] - 9/23/2011
Rep Gonzalez, Charles A. [TX-20] - 10/25/2011
Rep Grijalva, Raul M. [AZ-7] - 10/25/2011
Rep Gutierrez, Luis V. [IL-4] - 9/15/2011
Rep Hinchey, Maurice D. [NY-22] - 10/5/2011
Rep Jackson, Jesse L., Jr. [IL-2] - 10/25/2011
Rep Jones, Walter B., Jr. [NC-3] - 7/15/2011
Rep Kaptur, Marcy [OH-9] - 10/3/2011
Rep Kind, Ron [WI-3] - 11/17/2011
Rep Kucinich, Dennis J. [OH-10] - 8/5/2011
Rep Lance, Leonard [NJ-7] - 11/16/2011
Rep Latham, Tom [IA-4] - 11/16/2011
Rep Loebsack, David [IA-2] - 10/25/2011
Rep Markey, Edward J. [MA-7] - 7/12/2011
Rep McCollum, Betty [MN-4] - 10/14/2011
Rep McGovern, James P. [MA-3] - 11/18/2011
Rep Michaud, Michael H. [ME-2] - 10/3/2011
Rep Miller, Brad [NC-13] - 8/5/2011
Rep Moran, James P. [VA-8] - 9/22/2011
Rep Norton, Eleanor Holmes [DC] - 7/28/2011
Rep Payne, Donald M. [NJ-10] - 11/18/2011
Rep Perlmutter, Ed [CO-7] - 11/17/2011
Rep Platts, Todd Russell [PA-19] - 9/7/2011
Rep Rangel, Charles B. [NY-15] - 9/13/2011
Rep Roybal-Allard, Lucille [CA-34] - 11/17/2011
Rep Ryan, Tim [OH-17] - 7/27/2011
Rep Sanchez, Loretta [CA-47] - 9/22/2011
Rep Schakowsky, Janice D. [IL-9] - 9/13/2011
Rep Speier, Jackie [CA-12] - 7/15/2011
Rep Tierney, John F. [MA-6] - 10/31/2011
Rep Towns, Edolphus [NY-10] - 10/3/2011
Rep Tsongas, Niki [MA-5] - 7/26/2011
Rep Welch, Peter [VT] - 9/22/2011
Rep Woolsey, Lynn C. [CA-6] - 9/14/2011
Rep Young, C.W. Bill [FL-10] - 9/7/2011
Rep Young, Todd C. [IN-9] - 10/31/2011
U.S. Senate Co-Sponsors:
Sen Collins, Susan M. [ME] - 11/10/2011
Sen Crapo, Mike [ID] - 7/12/2011
Sen Franken, Al [MN] - 7/26/2011
Sen Inouye, Daniel K. [HI] - 9/26/2011
Sen Kirk, Mark Steven [IL] - 7/12/2011
Sen Klobuchar, Amy [MN] - 7/27/2011
Sen Leahy, Patrick J. [VT] - 11/17/2011
Sen Merkley, Jeff [OR] - 10/18/2011
Sen Murray, Patty [WA] - 7/12/2011