Living Well with a Bad Diagnosis - Lung Disease

Tuesday, April 30, 2013

Talking Through the Day

Mom and I created quite a stir yesterday. We talked between and laughed our way throughout three doctors appointments. We arrived on time to the early appointment only to find that we were at the wrong campus. They rescheduled it for 2:30 then we drove to yet another campus for the next appointment. It was moms pre-op with the anesthesiologist for her eye surgery to stop a running eye. Done. We went back upstairs for the next appointment with the surgeon.

He was the tall, handsome doctor who reminded us both of my brother. We started talking about road trips and I started telling stories. He kept asking questions. I kept telling stories. The fellow left the room, he stayed. I started talking about my lung disease - the reason why I can't fly - and he started asking more questions. I think he stood in front of the door for over 20 minutes just talking. He walked us out to the waiting and was smiling as two of the many women who work in the back office hugged us as we went by. I turned and said to him, "We have quite a reputation." He replied, "I see that!" On our way out the door, the volunteer whom we have gotten to know said her goodbyes as she is going to volunteer at a senior center. We will miss her!

We had over two hours before the rescheduled appointment so what did we do? Shopped, of course. A quick lunch at McDonalds then Macy's where I bought a fantastic turquoise tweed jacket on sale marked down from $100.00 to $36.00. Afterwards, we went by a Starbucks for a treat - chai for mom, tea for me. While paying, I saw the CD of the group with whom William is touring. I showed mom. It makes it so real when I see one out of context in the normal world. It is also really weird when I am in a store and hear it being played or have their video playing in the Juniors department in Nordstroms while walking by. Makes me smile.

We made our way to the main hospital for mom's injection to help prevent more bone fractures. The valet parking guys - who we have also gotten to know - thought it was fantastic that mom had a new Mini Cooper. She loved the attention! The injection went well then right afterwards, we screamed eight cities north to my butchers then back near mom's for a Trader Joe's run. I was out of food.

After leaving the house at 7:00 in the morning I finally pulled back into the driveway at 5:00. I was pooped but it was not done yet! After hauling in groceries, putting everything away, I cooked the pork chops and the turkey breast. Dinners for four nights are done! It was a long day, I was a bit hoarse from talking so much and the cough seems to have returned a bit. I am debating whether or not to take the antibiotics Dr. K. gave to me in case I needed them. I have no fever just this occasional dry cough after exertion. I slept so hard last night and taking it easy today. I will be staying on the coast for a hair appointment and a Safeway run. I need to not talk all day! Impossible, you say?

Monday, April 29, 2013

It's All Good

It is still dark. I will leave within the hour. Mom has three doctors appointments this morning then we have to grocery shop so it is going to be a long day. The weather is going to be in the 80s today and the 90s later in the week. Michael wants to wear his new short sleeved shirt all week!

We had a glorious day together yesterday. It was the first time in many weeks that Michael was with me on a Sunday. He cleaned up the garage, fixed the new swing (we had put it together wrong), looked at the sprinklers in the back yard and replaced an outdoor light in front. This was after a lovely drive along the coast to our favorite dive for fresh fish. They even had a hot artichoke with aioli sauce on the specials menu for $1.00. Yum! I also had an appetizer-size portion of calamari while Michael had a Ramos Fizz, crab sandwich and fried oysters. We drove home through the back hills and canyons with the windows down and music on the radio. I felt like I was 20-years old again.

With his new job, Michael has lost the weight he wanted to lose. All the standing and walking to the paint shop a few blocks away several times a day has done the trick! The old 34" pants are now loose. I am so proud that he has transitioned from being a worker all of his life to a manager. Way, way out of his comfort zone. He is watching and learning and just being his charming self. Everyone in the office has grown to trust him and like him. As my mom says, "Who doesn't like Michael?!?"

We are also making plans for Michael's mom's 80th birthday this July. We are going to invite her to our home with her sister, Aunt Patty with whom she is currently living. We will take them on her actual birthday for steak and lobster (her favorite) at the place right on the water north of us followed by dancing to a live band. Did I mention that she needs no dance partner and is a fantastic dancer? It will be perfect! She loves the place where we had lunch yesterday so we will have to also show Aunt Patty the goat farm while there. Michael thought it would be nice to invite my mom along for a lunch at the Sheraton Palace in San Francisco for the final treat. Very elegant. So, I will be talking this over with Michael's sister before we actually begin to make arrangements.

Sunday, April 28, 2013

Day Off and Menus for the Week

A day off. Today. Nothing on the schedule. Nothing I HAVE to do.

Michael, though, has to do something quickly this morning then he is home for the day. We are thinking of driving down the coast in search of fresh fish for lunch. The whales have been migrating near the shore so there is a good chance that we could spot one or two.

I am a bit soar this morning. After a morning of doing yard work yesterday, my shoulders and arms are demanding notice. They will rest today. And tomorrow. Mom has three doctor appointments tomorrow. Yes, three. She also has her final appointment on Friday with the foot doctor who chopped off her toe in February.

Menus with a recipe for the week are below. It is going to be an easy week. The goal is 3-4 ozs of protein and 2/3s of the plate with fresh veggies. This is the formula for those of us who are on long-term prednisone therapy. I found some turkey sausages that are very low calorie and low carb in the frozen section, so I have been having two for breakfast with some cut vegetables in the morning. Lunch has been lean turkey and cabbage. So, enjoy the week ahead, eat well, exercise and live well.

Easy Cheese Chili Chicken
Pork Chops with a side salad - 4-ozs per chop on the bone

Half of a Turkey Breast on the bone (Trader Joe's) - with fresh asparagus

A Rib Eye steak - On the grill with fresh sliced sauteed mushrooms. I eat about 1/3rd of it and Michael enjoys the rest.

George Stella's Easy Cheese Chili Chicken - I use 1/2 chicken breasts per serving and adjust the recipe by using non-fat cheddar cheese and more vegetables. I will also serve a side salad with it.    http://www.genaw.com/lowcarb/easy_cheesy_chili_chicken.html

Saturday, April 27, 2013

More Test Results - BAD

So, I got good results from the recent blood tests for cholesterol, Hep A and liver function but yesterday was not a good day. The results from the Hepatitis B antibody test came back that I do not have immunity against it. This is after a series of three vaccines.

I met with my primary doctor in the afternoon to have the two stitches removed from the little red spot biopsy. I asked about the Hep B test, she looked at the numbers (thank goodness for cell phones) and she said she had never seen this happen. Why didn't the vaccines work? We agreed that I would speak with the liver doctor during my appointment a week from Thursday to see what he recommends. A booster? Another full series of shots?

Mine looked a bit like this
And here is the really bad news: The biopsy of the little red spot came back as a Basil Cell Carcinoma. A cancer caused by long-term sun exposure. It was very new, we just missed getting every little bit of it so I have to have more removed. The doctor had already sent the biopsy results and request for a dermatologist to my university hospital. I need an all-over-the-body exam to make sure I have no other issues. No other little red spots. No weird moles.

More doctors. Great (sarcasm!)


Friday, April 26, 2013

Panic and a Speech

My heart stopped. I opened an email of blood test results from my university hospital Wednesday around 5:00PM to find that a test for Hepatitis A was positive. My heart sank. Hep A?!?! I quickly Googled it, was worried that I may have passed it along to Michael and my mom and maybe others. It was horrifying. We were stunned.

I quickly sent an email to the liver doctor asking how I could have suddenly gotten this as I had been vaccinated? It was a long night. After running errands yesterday morning, talking with the pulmonary rehab group and while checking my iPhone while having a pedicure, I finally read his reply. He said not to worry as it means I am immune from getting Hep A due to the vaccine, which would show up as a positive in the test.

Hugh sigh of relief. I wish I would have been warned!

The short speech to a small group of newly diagnosed lung patients was to encourage hard, consistent exercise for a better quality of life and maybe even extend it a bit. It was more of a chat rather than a formal speech. I got my points in: How my life was before pulmonary rehab compared to after 7 years of hard exercise six days a week. They got it. They were stunned how I looked and that alone made believers of a few of them. I was not there with supplemental oxygen. I was up and dressed and full of energy. I was educated about my disease. The head of the program, Louise, told me that the feedback was very positive and they said I was very inspirational.

Inspirational. That is the word that Michael uses to tease me. You can only image how! So when hearing that word, I always giggle or cringe. I just want to live my life in a forward moving, positive manner with a fatal chronic disease rolled in!

What do I think is inspirational? Early this morning, I am going for a walk along the coastal trail with Natalie while Winnie and Oliver are in school. She spotted a pod of some large migrating whales very close to shore on her walk earlier in the week. That is my inspiration. Nature. The joys of nature. The life cycles of nature always inspires me. Also, the sound and smells of the glorious ocean. It is where I draw a lot of my strength.

Thursday, April 25, 2013

Speaking About Exercise - Loving Yoga

The yoga class was small. Four women. Somehow, I was able to do and feel more yesterday than ever before. Maybe it was less distractions or maybe I was just more focused. There was one point during the 90-minute class that I must always fall back into Child's Pose to catch my breath, even with supplemental oxygen. I just have not been able to do the one Sun Salutation that the teacher leads us through four times in a row. The most I have ever been able to get through, on a good day, is one. Yesterday, I did two. It took a bit to get my breath back under control before falling into Child's Pose, but I did it. It felt so good and I had quite a feeling of satisfaction.

After the class, I was able to function (!) and went by Safeway on my way home. While home, I did a lot around the house, took a shower and played with the orchestra last night. I think my body is adjusting and growing stronger since I began this difficult yoga class last January. Never, not ever, would I have imagined in my wildest dreams that I would be involved in and even become addicted to yoga!

I was recently reminded that a study about yoga and lung disease at my university hospital revealed that there was a very positive outcome. It makes sense when I think about all the time spend on focusing on breathing with every move. Deep breathing. Restorative breathing.

Today, I am speaking with a small group at my rehab hospital. It is a group of patients who have been recently encouraged by their doctors to attend pulmonary rehab. Most go through the 8-weeks of education and exercise but few continue in the maintenance program that I have been attending since 2005. My talk with this group today will focus on the importance of consistent, monitored exercise.

And finally, my mom had a minor accident in her new Mini Cooper yesterday. She was soooo upset. She has never had an accident or ticket. Fortunately, she hit a very old parked car while pulling out of a driveway. A minor brush. Michael went by to see it on his way home and said it was hardly anything. I know he made my mom feel better. She has a doctor's appointment on Monday so I get to drive it! I am praying I don't get in an accident!!

Wednesday, April 24, 2013

Good Tests

Dick was back at the rehab class yesterday. He was at the very end of a cold, coughed once in a while but really a lot better than I had expected. It was good to see him and hear his huge laugh! In the morning, I drove into the city for a fasting blood test requested by my liver doctor and endocrinologist. Liver function and cholesterol. By the time I got home, the test results were already sent to me. The Lipitor seems to be working as my numbers are the lowest ever. I will be going over the results of the liver function tests with the doctor in two weeks. They are a bit more difficult to understand.

On my way to AAA to register mom's car in my name, the street was shut down with crime tape everywhere. Next to them is was a large city post office and someone spotted a backpack leaning up against the front of the building. It turned out to be nothing. Thank goodness.

I will be working on my little informal talk tomorrow with a small class of people learning about their lung diseases. The focus of the talk will be on the value of exercise.

Yoga class today followed by a quick Safeway run then a nice hot shower! The orchestra rehearsal is tonight with the concert coming up quickly.

The fog is being very stubborn today so it will only be a high of 58 degrees today though it will be in the mid 70s over the pass. Ah, the joys of living near the ocean!

Tuesday, April 23, 2013

Lung Diseases Now Included at FDA Drug Development

I received an e-mail from the wonderful people at The Coalition for Pulmonary Fibrosis regarding the inclusion of pulmonary fibrosis in a new program at the FDA that will allow patients to be part of the process of drug development. Here is the information:


The FDA Heard Us - the Pulmonary Fibrosis Patient Community - and PF is included in the FDA's Patient-Focused Drug Development Program!  Thanks to you and every member of the PF patient community, including advocacy groups, patients, family members, caregivers and medical professionals, PF will be part of the initiative, even though we weren't on the preliminary FDA list! More than 2,000 CPF members sent letters to the FDA to Commissioner Margaret Hamburg and she and the entire FDA heard you!!  
If you recall, the Coalition for Pulmonary Fibrosis spoke for members of the PF community at a key FDA meeting in October last year to ask that PF be included in an important new program at the FDA that will include patient input in the process of drug development.
This new drug development program resulted from the Prescription Drug User Fee Act passed by Congress last summer.
Also, PF Champions in Congress, Senator Christopher Coons (D-DE) and Erik Paulsen (R-MN) wrote a letter to FDA's commissioner, Margaret Hamburg asking her to include PF in the program. 
The CPF remains committed to advocating for patients and families fighting PF and we look forward to working with the FDA on your behalf in this new Patient-Focused Drug Development Program at the FDA.  
If you'd like to support our efforts to raise awareness for PF, you may make a tax-deductible contribution by clicking here.
Please see our full press release on this news pasted below.
Sincerely, 
Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis

Pulmonary Fibrosis Patients, Advocacy Groups Applaud FDA Decision to Add Untreatable Lung Disease as Part of Five-Year Patient-Focused Drug Development Program

CPF and PFF Joined Patients and Medical Professionals to Urge the Federally Mandated Program to Include Deadly Disease
The Coalition for Pulmonary Fibrosis (CPF) and the Pulmonary Fibrosis Foundation (PFF) today applaud the FDA for including Idiopathic Pulmonary Fibrosis (IPF, also known as Pulmonary Fibrosis, PF) on a list of 16 diseases the FDA will focus on for the first three years of its five-year Patient-Focused Drug Development Program. The list was announced April 11th in the Federal Register.  
The CPF and PFF jointly urged the FDA to include IPF/PF on the list for the federally mandated program at the FDA’s public comment meeting on October 25, 2012.  In addition, more than 2,000 patients, family members and medical professionals sent letters sent to the FDA asking for PF to be included in the Patient-Focused Drug Development Program. 
“The FDA heard the voice of the PF community,” said Mishka Michon, CEO of the CPF.  “We are pleased PF will be included in this important FDA initiative and we believe our community’s involvement in the FDA's effort to include patient input in disease areas will accelerate the search for treatments and a cure for PF.”
“We are extremely grateful to the FDA for including us in the Development Program.  We are hopeful and optimistic that this will facilitate the development of more effective therapies for this devastating illness,” said Daniel M. Rose, MD, Chairman and CEO of the PFF.
PF had not been included the FDA’s preliminary list of 39 diseases published in the Federal Register on September 24, 2012.
2,000 Letters
The CPF and PFF asked the PF community - patients, their family members, caregivers and medical professionals - to send letters of support for the inclusion of PF in the Patient-Focused Drug Development Program to FDA Commissioner Margaret Hamburg.  Congressman Erik Paulsen (R-MN) and Senator Christopher Coons (D-DE), who have led PF legislative efforts in the U.S. House and Senate, also wrote a joint letter asking the FDA Commissioner to include PF in the program.
Over half of Public Comments included Interstitial Lung Disease
According to the FDA, over half of the comments it received regarding diseases to be included in the Patient-Focused Drug Development Program were from supporters of Interstitial Lung Disease (ILD - a category including 300 lung diseases; Pulmonary Fibrosis is the most common form of ILD), lung cancer, and narcolepsy.  In addition, a common co-morbid condition for patients with PF, Pulmonary Arterial Hypertension (PAH), received a large number of comments and was also placed on the list.
According to the FDA’s published general schedule of its disease-specific meetings, a workshop on PF will be held in fiscal year 2014 or 2015. The first disease-focused workshop for the FDA program will be held on April 25th on Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. 
FDA Decision Criteria
The FDA indicated that the final list of diseases selected were based on the following criteria:  “Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living; disease areas for which aspects of the disease are not formally captured in clinical trials; and disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels or functions.”  Also the perspective of reviewing divisions at the FDA and the input from the public were considered as the FDA determined the final list. 
Background on FDA Federally-Mandated Program:
The five-year initiative fulfills the FDA’s federally mandated performance commitments, which are part of the fifth authorization of the Prescription Drug User Fee Act (PDUFA V).  The program’s purpose is to provide a more systematic approach for the FDA to obtain patients’ input on specific disease areas, including their perspectives on their condition, its impact on daily life and available therapies.
To view the FDA’s announcement of the disease areas chosen and published in the Federal Register on April 11, 2013, visit: http://www.gpo.gov/fdsys/pkg/FR-2013-04-11/pdf/2013-08441.pdf

Monday, April 22, 2013

Lisa

I have met a couple of people through this blog who have become lifelong friends. They are people struggling with an ILD and searching for information. One of these people is Lisa. Her horrific story begins with a rash, pneumonia within a week, released on oxygen from the hospital too early, grew sicker, kept seeing the doctor, no x-rays, no saturation levels checks and within the month, she was dying. She had developed Respiratory Distress Syndrome (ARDS) and spent the next month in a medically induced coma. She awoke with a tracheotomy. Within 10 days, she was off the vent and was told she would make a full recovery. WRONG. Back into the hospital twice, it was discovered through a lung biopsy that the ARDS created scar tissue and permanent damage and she also developed an ILD. She was a very active person in her late 30s.

It has been a struggle but she has a fantastic support group around her.

Since knowing her, she has been in and out of the hospital and very ill. I worried a lot but she always was able to bounce back enough to get home. Due to the prednisone, she gained a lot of weight and could not meet the maximum weight requirements for transplants.

In one conversation, we wrote each other about one of the members of my ILD Support Group who was denied entrance into the transplant program at my university hospital. He applied to UCLA's program, was approved after having some coronary artery disease fixed, sold his house and moved, received a lung and is doing very well. Also, thanks to a male nurse at Stanford University, lungs are more available in California than in other states. He set up a system in all the hospitals and trained the staff to recognize appropriate donors. Lisa lives out of state but her mom lives near LA.

I just received word this morning that the staff at her hospital is working hard to get her a transplant at a hospital in California. There is hope. I am so thrilled for her.

Please keep her in your thoughts and prayers. She has been through so much and has such a wonderful spirit. I will keep you, dear Reader, posted on her progress.

Sunday, April 21, 2013

Speeches, Clinics and Blood Tests

Got it! Mom loves it. Done.
Last January, I had a meeting in the Liver Clinic, the doctor requested labs for liver function then contacted me with the results. He wants a liver biopsy and we will be discussing it in two weeks. I have no idea what this entails and why he wants one? What is making him suspect that my liver is beginning to be fibrotic? On Tuesday, I am going to the city for a fasting blood test for the liver function, cholesterol levels and thyroid hormone levels.

During the appointment with the liver doctor, I am going to ask for a referral to the dermatology group. I need to have my freckled body checked to make sure there is no hidden cancer. The biopsy taken from my chest is healing and the stitches are due out on Friday. I have not gotten the results from the lab, yet.

One of the things I really wanted to do when I became stable was to speak to groups of people dealing with a fatal diagnosis and especially, lung disease. Last May, it was wonderful to speak at the international American Thoracic Society's annual convention. About three years earlier, I was ask to speak at a smaller conference about lung disease featuring the two university hospitals in our area. So, this coming Thursday, I have been asked to speak to a small group during the education part of the pulmonary rehab class at the local hospital. The focus of the talk will be on consistent, daily exercise and its quality of life benefits. It is what I believe.

Saturday, April 20, 2013

Hot Minis

My 84-year old mom has been looking at Mini Coopers for the last year. She would notice if one was anywhere in the vicinity. As a very frugal person, she just could not justify a new car as her 1997 Mercury Tracer only has 80,000 miles on it. Finally, she wanted to test drive one yesterday.

The Mini dealerships are either in the city to the north or Santa Clara deep in the Silicon Valley to the south. We chose the south, met Larry and told him we would not be buying a car but just wanted a test drive.

That plan did not work. We looked at the used cars after driving a Mini, mom looked at me and said, "I want it." It was just a matter of paperwork. They told her it would be more expensive to maintain and it needed premium gas but she replied, "I don't care." So, so unlike my mom. She told me later that she is going to look at the car as her only luxury.

She is now the proud owner of a dark gray Mini Cooper. It is the first car she has ever bought by herself. We are going back this afternoon with a check and proof of insurance and a long drive home.

Just a comment about my breathing: During the test drive, it was warm. Too warm. When I got out of the car, I was red-faced, sweaty and not feeling great. Standing in the lot afterwards and looking at all the cars, the sun was just beating down on us. Heat just destroys my breathing. During the test drive of the car she bought, I stayed inside the air conditioned dealership and was fine after about 20 minutes. I am so grateful to live on the coastside near the cool ocean. I don't know how others throughout the world who have an ILD live in altitude or suffer through the heat of summer.

Friday, April 19, 2013

Pain

Lots of news about the Boston bombing this morning. I sure it will be wall to wall coverage all day. I have been thinking a lot about pain, both physical and emotional. Boston is experiencing emotional pain and the injured people still in the hospital are experiencing both.

Pain is something that can take control over a life. It is present everyday. I was speaking with a woman while waiting for the rehab class on Tuesday who has back pain. Severe back pain. She is very skinny because she says she is never hungry so it is hard to even eat. She is in constant pain and morphine is the only drug that helps so she can't drive. Her life is defined by the pain and now she just added a diagnosis of COPD. I so admire her for being up and out into the world and trying to function. That is one strong woman.

Pain. I am so grateful that it is not part of my daily life.

At the school where I got sick, a longtime teacher's husband had a horrific bicycle accident. He broke every bone in his face. He even destroyed his lower jaw. Truly extensive injuries. Even after many surgeries, he still had problems eating and drink and physically, they could only do so much. He recovered enough to go back to work but he committed suicide several years after the accident. He just couldn't live with the pain anymore.

Pain. I am so grateful that my husband is pain-free. Most people in his industry have pain later in their lives. He has always protected his back, legs, knees and lungs.

A brief note about yesterday's planned mammogram. It didn't happen. The radiologist was worried that a paddle could rub against the two stitches from the lesion I had removed the day before and cause an infection or pull the stitches. It has been rescheduled.

My love to the city of Boston and I hope their pain will wane with time.

Thursday, April 18, 2013

Lecture on HP and a Biopsy

I received an invitation from my university hospital to attend an hour-long lecture regarding my ILD, Hypersensitivity Pneumonitis, on May 9th. The presenters will be Talmadge E. King Jr and Julius R. Krevans who are major researchers and very highly respected (famous) doctors. Refreshments will follow the lecture. I have an appointment with the Liver Clinic that morning so I will already be on the campus that day. Perfect timing! I will take lots of notes!

For the first time ever, I left the yoga hell class in pretty good shape yesterday. I must be getting used to it or my body is developing muscles to help me through it. In the afternoon, I met with my primary doctor to have her look at a small spot on my chest where I have had lots of sun in the past. It has been red, not bleeding but not healing for almost a month. She numbed the area and cut it out for a biopsy. It was small but I have two stitches!

Michael's new job has really been an adjustment for me. It makes for a long day. I try to stay busy but my eyes drift to the clock beginning around 4:30 expecting him to come through the door. He has made it home by 6:15 the past two days. I slept in this morning because of the late orchestra rehearsal last night and only had about 30 minutes with him before he left. It also has been very weird when he gets home, he is still clean. This has never happened during the past 40 years. I am used to dust and paint and smells. Nothing. I have to admit that I do like that a lot!

Today, I have an appointment for a mammogram then will meet Sherman for the rehab class. It is suddenly wind-free and warm. Finally, it feels like spring. I think I am actually going to wear my shorts today!

Wednesday, April 17, 2013

Suddenly Management and a Happy Birthday

Day One: Michael had a lovely day at his new job and he looked fantastic in his new shirt, slacks and shoes. It is a very large operation, everyone welcomed him and he said he talked and walked a lot. At one point, he noticed a mess in a corner, picked up a broom when suddenly the owner rushed over and told him to put it down as it was beneath him to sweep. Esa, one of the three owner brothers, was trying to help Michael to understand that he was now management. That is going to be a hard concept for Michael to remember! He is a Virgo, after all, and can't stand anything out of order or dirty.

I thought about him throughout the day, had a good workout at the rehab class, Dick is still quite ill, Sherman was in fine form and it was a quiet day. Michael got home, had the leftover BBQ chicken and some small ravioli for dinner then headed to a friend near Wayne's for a Boys Night Out. Michael ate some fantastic homemade chili and cornbread and he said it was the perfect end to his first day. He got home just before 9:00 and we both slept like babies.

It is the yoga hell class this morning followed by some yard work, some laundry and a quick drive by my primary doctor in town. I have a small red something on my chest that is worrisome. It does not bleed but it has not healed in a month. I want her to take a look at it. The issue is that if it is something other than a pre-cancerous or a simple skin cancer, I will not be able to have lung transplants until I am cancer-free for five years. Soooo, worrisome. I don't know if she will have time to see me as a drop in but maybe tomorrow afternoon...anyway, I will make an appointment if I need to.

It is Natalie's birthday today. I will never forget this newly graduated Master opera singing diva who I hired to teach Pre-K - 5th grade general music and choirs in 2000. She had no experience but the kids loved her. She developed into the best teacher I have ever met. Who knew that we would become such close friends and walk through life together? I am sure that Winnie and Oliver and her sweet Ethan will be celebrating the day with her.

Tuesday, April 16, 2013

New Beginnings Today

We have been so fortunate in our lives to have travelled a lot, both nationally and internationally. We have visited almost 40 states including Massachusetts but we have never been to Boston. It is on our to-do list. It was horrifying to watch the aftermath of the senseless bombing on TV after getting home from mom's two doctor's appointments. How can anyone justify killing an 8-year old child waiting for his dad to finish the race? I also understand his sister and mom are in very critical condition. I think we all search for the "why" because we just can't imagine a reason for this madness. My love to the people of Boston. We will visit soon.

It is a big day at our house today. Michael begins a new job and, for the first time, he will be using his brains and experience and not his brawn to earn a living. After dinner last night, he bought new shoes and appropriate clothing. We were in and out of Macy's within 30-minutes as he is one quick shopper!

Mom's cancer doctor told mom when she wrote the referral for a back doctor, that since mom's husband was so handsome, she would refer her to a very handsome doctor. Well, that trend continues. Two weeks ago, we were at the eye clinic when mom mentioned that her one eye constantly dripped. The eye doctor referred her to a specific eye surgeon after we giggled and told her that mom only had the most good looking of doctors. Well, we met him yesterday and yes, he was handsome. Oddly enough, he reminded us both of my brother. He checked her "plumbing" in the eye but that was fine. The problem was that her lower eye lid had pulled away from her eye ball thus the tears don't go down the tube (plumbing) properly. So, she is having a quick surgery (called an ectropion) to tighten it. As a test, he used tape to bring up the outer corner of her eye and the tearing immediately stopped. Amazing.

It appears that the wind has finally stopped and it is predicted to be warmer for the next few days. The yards are a mess again. More damage. More small branches from the birch trees are scattered all over. Everything is so dry again.

Rehab class today but I don't expect to see Dick. He has a horrible cold. It is always scary when an 80-year old with emphysema develops a cold as it can so easily settle in his lungs.

So, a lot of sadness today but also a new beginning.

Monday, April 15, 2013

Jumping into Monday

Sunday, I was still tired from the party on Saturday and climbed back into bed after Michael left in the morning. It felt fantastic to doze on and off until deciding to get up and dressed around noon. I ran into town to the organic market for some lunch and enjoyed a quiet afternoon.

It is still windy here today. We have had enough! It did wane enough for us to BBQ the most delicious chicken ever last evening. High quality chicken + a dry rub + a swipe of BBQ sauce at the end = the best chicken. We also sliced some zucchini lengthwise and grilled them. Lots of leftovers for a few days. Yummm.

Our front yard now has small branches from the birch trees scattered about. Again. I will spend a few minutes everyday to pick them all out of the bushes and the gutter. What a pain. Enough with the wind, please!

This is our last morning together before Michael starts his new job tomorrow. No more leaving or coming home when he is ready. It is 8:00 - 5:30. This is going to be a challenge for him! This evening, we are going to CVS to buy reading glasses for him then Macy's to buy new jeans and polo shirts and shoes.

Mom has a appointment with the eye surgeons this morning and her dermatologist this afternoon. One eye has been dripping constantly so a small drain is going to be inserted. The other appointment is just a check up.

Yesterday was a crazy TV day: Formula 1 race, nail-biting Giant's game, the movie Cattleya, Mad Men, Bar Rescue, DVR Saturday Night Live. That is a lot for us.

Exciting week ahead with lots of changes in store for us.

Sunday, April 14, 2013

Post Party

The list of things to do went quickly yesterday morning so by 12:30, the cake was made, the yards were restored after some winds, the front door was cleaned, the table was set, the cocktail area organized and I was ready. I do confess that I had an almost two hour nap.

We so enjoyed having Rick, Natalie and their daughter Melanie, who just finished the school musical having one of the lead roles. She is an excellent students, beautiful, plays on the tennis team and the school band and has tons of friends. I love talking with her, hearing all the drama of being a teenager and she explained some interesting things she was currently learning in her AP Physics class.

The German food was a complete success. They LOVED it and it was so simple for me. It was even better to pack up all the leftovers along with the cake and we sent it all home with them.

Michael has another big day today trying to get things done before he begins work on Tuesday. If it is not windy, we are going to BBQ some chicken for dinner. We also will cook long strips of zucchini with it.

I do have to admit that Michael once again came up with the brilliant idea of buying the food and serving it as appetizers for the party last night. All I had to do was make a cake, which was enough. I was not exhausted by the time the company arrived and I feel pretty good this morning. So once again, we still can have company for the evening but we adjusted to protect my stamina and it worked just fine. Adjust and move on. My motto.

Saturday, April 13, 2013

A Bit of a Party

Schmidt's
After spending the day with mom, I got home and waited for Michael so we could go to the city. He was late. He phone from at Jim's, south of town. Since it was Friday, Michael was having a cocktail and never drives afterwards. I had to go and get him. Well, it may not come as a surprise, I got talking to everyone so we didn't leave for a couple of hours.

Rick and Natalie are coming early this evening for a little celebration for Rick's birthday. We had to buy a little something for him last night, have some dinner and order the German food to-go for tonight's appetizers. We were now running late.

We left Michael's car at Jim's, I drove home so we could change our clothes, we headed north towards the city, went buy Bev Mo for a small bottle of amazing bourbon for Rick's gift, made our way to the Mission District in the city, hunted for a parking space and finally got to the German Restaurant, which was utterly packed.

Sharing a community table, we settled in. We ordered a sausage plate for our dinner and another one to-go along with several pretzels, chicken liver appetizers and sides of sauerkraut and potato salad for tonight. It smells fantastic in my refrigerator right now. We also bought a really perfectly sweet mustard for the pretzels and sausages. All I will have to do for tonight is to reheat everything. I fell into bed at 10PM, really late for me, and slept through the night.

We are watching the DVR of the qualifying for the Formula 1 race from China right now. Afterwards, I have to drive Michael back to Jim's so he can get his car, race back home to back the cake for tonight, blow any leaves from the yards, set the buffet table and set up the cocktail area. I feel a nap coming on!

Tomorrow, I am expecting a quiet day for me but madness has surrounded Michael. He is trying to get a ton of stuff done before he begins work on Tuesday. Life is changing. What a year this has been. So many changes, both good and very bad.

Friday, April 12, 2013

Cars - Mustang and Formula 1

William driving the Mustang for the
very first time.
We did it. We ran around early yesterday, met for coffee then met back at the house to grab the 1966 Mustang convertible that Michael and William have been building from the frame up for a few years and began our adventure along Highway 1 south to Monterey. It was an easy 90-minute drive along with world famous views along the coast. The ocean was wild, it was less windy and warmer as we traveled south until it was downright balmy in Monterey. We got lots of looks from people. The car is rather dramatic looking and LOUD. I think people were shocked that such old people were driving it! William had finished a concert in Davis the night before and had the day off on their way to San Luis Obispo then Coachella this weekend. He phoned Wednesday to ask if we wanted to come down for lunch. What he didn't know is that we were driving the Mustang.

Texting, we learned that they rented 15 day rooms at the Intercontential Hotel (for showers and naps) on Cannery Row but he was on the tour bus parked across the street. I texted that we arrived, he saw the car from the bus and came running along with several other people. The valet parking guys were loving it and we all peered under the hood together.

He wanted to walk to lunch so we took off down the main drag. We found a place right on the Monterey Bay, watched an otter swim by on his back and the waves were breaking against the rocks just below us. We ordered appetizers of Monterey Sardines with white beans and calamari, a beet salad, a dozen oysters and Michael ordered a meatball sandwich. Yes, they also had beers.

We met someone working on his tour and stopped for a chat. After lunch, we walked back - the car was still parked in front of the hotel - and had William drive us a couple of miles away for some coffee. It was funny to see a kid born in the 80s trying to turn a car with standard steering! He had to learn the secret that the car needed to be moving a bit as he was trying to turn. It was so loud and felt so dangerously fast (though it is totally safe) that he was rather afraid of it. It will take a bit of time for him to be comfortable.

We said our goodbyes, jumped back into the car and headed north, back into the winds and clouds. It was another easy ride back, very little traffic and we stopped for dinner at our favorite dive in Pescadero. Michael had their Chili Verde and I had their very small appetizer of calamari. I nabbed some of Michael's cole slaw! He ordered a piece of their famous pie to go.

All in all, a very fun day and actually our last road trip for a while. Michael starts his new job on Tuesday so we are going to have to stay home. We watched a replay of the afternoon's wild Giant's game against Chicago. This morning, I awoke to find Michael watching the practice run of Formula 1 from China. With all the drama with the Red Bull team (Vettel passed his teammate Weber to win the last race after the team told them both to slow down as they were clearly going to win so they could conserve fuel), it is going to be a very interesting race. They are still not playing well together after a two week break.

Thursday, April 11, 2013

Unexpected Adventure

We are having an adventure today! William is on tour but has the day off today in Monterey, which is just 90 minutes south of us. We are meeting him around noon and will spend the day with him. I am so excited!

After the housekeepers arrive early this morning, I am heading to the nursery to buy the annuals and Safeway for some food then meeting Michael at the house around 11:00 to head south. A busy morning. Mom has two doctor appointments tomorrow then Michael and I are having dinner in the city so it is going to another busy day as well.

It took just over 7 hours to get the gardens back in shape after the winds and I even did some major trimming. My arms are so sore this morning! Saturday morning, I am going to plant the annuals, bake Rick's birthday cake and try to take it easy until they arrive for appetizers and cocktails.

Michael was approached by a company he used to work for years ago and they have been talking. Yesterday, they came to an agreement. He will begin working for them on Tuesday as a quality control manager of one of their shops but they want to groom him to manage one of their two other shops. No more physical work! We have to buy some new jeans and polo shirts for his new work attire.

The beautiful Susan from the ILD Support Group went to the meeting where the leader saw her O2 drop first hand, contacted Susan's doctor and he phoned her last night. He ordered a HRCT Scan for today. He thinks her sudden downturn may be the disease progression, something going on with her heart or bronchitis. She says she doesn't have symptoms of bronchitis but neither did I. That is the best of the three choices so I hope that is what they find today. What is rather scary is that she has been feeling tightness in her chest and her lungs hurt.

One of our members had one lung transplanted and Susan was able to visit him just a day after they were getting him out of bed. He looked fantastic but he and his wife are feeling a bit overwhelmed.

We just decided to drive the 1966 Mustang convertible down to Monterey to surprise William. It will be the furthest we have driven it. I am a bit nervous that it will break down but Michael has full confidence that it will be no problem. Here we go!

Wednesday, April 10, 2013

Gardening, Rehab Class, Saturation Rates

No Wind! Into the garden I go for the next two days. They are a total mess from the massive two-day 60 MPH winds. Lots of small branches from the birch trees are scattered all over the front yard and everything is now so dry. The plan: The back yard today, the front tomorrow along with buying and planting annuals. I feel good. I slept a full 9 hours without waking during the night. I am ready. Oh, and it is supposed to be in the mid-70s this afternoon. Just about perfect.

We also confirmed cocktails and cake with Rick and Natalie on Saturday evening. Since the housekeepers are coming tomorrow and the gardens will be finished, the only thing we need to do in preparation of their visit is to set up the new swing in the garden, buy German food Friday night and bake a cake on Saturday. If the weather is still nice, we can serve cocktails outside.

Yesterday's rehab class was satisfying. I got a good workout, chatted with Sherman and Kathy told me that she was heading to Chicago next week for the very first time. We talked about all the things she should see, how to get to the top of the Hancock Building without paying for the observation deck (go to a different bank of elevators behind the main ones and up to the restaurant/bar just a floor down from the observation deck), the Shedd Aquarium, Navy Pier and, of course, Marshall Fields!

We have been watching the Giant's games in the evenings but they end too late for me! Michael gives me an inning by inning replay every morning.

I had a wonderful chat with the beautiful Susan from the ILD Support Group. She was diagnosed with IPF in 2010 and is retiring in a couple of weeks. She has had a sudden and terrifyingly fast decrease of her saturation rate. Just a small flight of stairs reduced it into the 70s. We worried about a possible pulmonary embolism or that an infection she had in January had not been totally eradicated and has developed into bronchitis or pneumonia. She was going to the ILD meeting and maybe a stop into the Immediate Care to have someone listen to her lungs and maybe a quick CT Scan. Downturns are so scary but such dramatic ones are terrifying.

My saturation rates are still increasing during rehab so I am excited to see Dr. K. in a few months. I think the bronchitis is finally gone. During the gardening today, I will have lots of oxygen and a good mask to protect my poor lungs from the bacteria in the soil.

Tuesday, April 9, 2013

Dry Eyes and Winds


After mom's doctor appointment yesterday, we drove to the coast and had lunch at a Taco Bell right on the ocean. Because of the high winds, the surf was even too dangerous for the fishing boats or surfers as it had wild waves, white caps and even some foam. We sat for an hour just watching the magic of nature. Afterwards, we drove down the coast and she had her first ride through the new tunnel. It was magical. She was so excited and just wanted to take it all in. The ocean and the views were fascinating all the way home. We stopped for a few minutes at our house, looked at all the damage in the gardens from the winds then I drove her home. What a great day together. We talked non-stop.

The winds continue today and should dissipate tonight. I am taking time tomorrow after yoga through Thursday to work in the gardens. After cleaning everything up, I am going to finally plant my annuals. The neighbors are due Saturday afternoon and I won't have time on the weekend to do any of the yard work.

Prednisone. Along with many problems with its long-term side effects including my liver, pancreas, thin skin, glaucoma and high cholesterol, the one that affects my daily life most is the glaucoma. I have developed a sensitivity to the preservatives in the eye medication and have very dry eyes. Twice a day, I use Refresh lubricant eye drops and especially like the extra thick gel ones for sensitive eyes. I even had to change eye medication to an expensive one - Zioptin - that is produced with no preservatives thus needs to be refrigerated. Another challenge.

Monday, April 8, 2013

Upcoming ILD Support Group Meetings

What a night! The winds kicked up around 2AM, the power went off around 4AM then came on at 6AM. It is a warm wind, which in California means earthquake weather! Oh no! Let's hope not!

The problem is the stop light at the end of the pass will probably be out again so going to mom's this morning is going to be a challenge. She has an early appointment so I will have to build in enough extra time due to the traffic mess.

Due to the winds, the front yard is covered with my white Camellia blossoms and some garbage! Everyone sets their cans out on Sunday night for early Monday morning pickup but, the garbage cans are all toppled and some popped open. Lovely.

Watching the news this morning, there are a lot of wires down, trees fallen and heavy winds throughout the entire area. So, back into Monday we go. A rather quiet week ahead so I plan to do massive yard work and plant my summer annuals. That alone with take a few days!

The ILD Support Group is meeting this week but it is just discussion so I am going to my pulmonary rehab class instead. But, I just learned that we are going to have a speaker in May to discuss telomeres, familial PF and stem cells. In June, the speaker will discuss how to protect our lungs against environmental exposures. Also, a lovely woman from a local hospice has offered to teach us all about filling out the bright pink POLST forms (Physicians Orders for Life-Sustaining Treatment). That should be interesting. I will report back after these meetings.

Also, there a Pulmonary Fibrosis Foundation Summit in La Jolla, CA next December. These conferences usually sell out so if you are interested in attending, register at http://www.pffsummit.org/

Sunday, April 7, 2013

Sundays - Past and Present

It felt fantastic to workout at the other rehab yesterday. Afterwards, I found a white jean's jacket, a t-shirt and a new yoga shirt at Kohl's. They do have amazing sales! It rained on and off but the sun came out around 6PM, too late to dry the gardens out for cutting today.

This morning, I have to run Michael over the hill then pick him up later in the afternoon at Jim's here on the coast. While over the hill, I am going to hit the other rehab again. Good for my thighs!

We are excited by the return of Mad Men tonight. Love/hate that Don Draper but really love noticing the costumes and hair styles from the past. No Formula 1 race this weekend but the Giant's will be playing this afternoon. And to round out my day, I will be washing and ironing our sheets. All good things on a Sunday.

What do I miss on Sundays since my ILD diagnosis?
I miss the feeling of being exhausted and spent after being out late with friends on Saturday night.
I miss getting up early, dressing up and going to church.
I miss Sunday afternoons at the movies.
I miss our all-day walks through town then up and down the coast.
I miss our bike rides.
I miss our hikes up into the hills.
I miss our walks into town for breakfast then a nice slow walk home.

It became clear that with the immune suppressant drugs that it was not wise to be around any groups of people: church, plays, movie theatres, concerts. I also had no stamina and was not on supplemental oxygen for almost a year after my lung biopsy. I remember being unable to walk just steps without being short of breath and being so jealous of someone casually walking along the street. I so wished I could walk out in the world again. It was that feeling that motivated me to seek a pulmonary rehab program. Once there, I grabbed it and pushed myself so hard that the RN made me promise not to do anymore than what she approved. I never wanted to feel so weak again. Building muscles and stamina was my goal.

Here I am functioning, ten years into the disease, almost nine years after being diagnosed. I can walk on the pedwalk along the beach with an oxygen tank on my back. I can play with my little orchestra. I can really do what I need/want to do except be around crowds of people. That is little enough compensation to protect myself from infections.

It worked. All the years of pushing myself everyday has paid off. I am still here, alive, out into the world and living well with a bad diagnosis.

Saturday, April 6, 2013

Brain Work and Soul Filled

I am playing hooky from my routine today as it is still too wet to work in the garden. I decided to head over the pass, workout at the other rehab, wander through a nearby Kohl's then pick up some food at Trader Joe's. Not my normal Saturday.

In garden news, the first bud has opened on one of our six rhododendrons this morning. It is blooming so much later this year as we really are having a late spring. It portends of great colors coming to my garden.

I met Natalie and the kids before Winnie's swimming lesson yesterday, we sat in the little play area in front while the kids played and we talked business. She may be reducing her work load from three part-time jobs to one full-time music teaching position at a school owned by the founder of the school where I got sick. She recently was told that Winnie would be able to attend this very private, very exclusive school for gifted children for FREE, a savings of $35,000 a year, if she was a full-time teacher. The only issue is a long list of students on a waiting list and whether they will make special room for her. I would bet that they would in order to urge Natalie to commit to them for many years. They love her and she is developing major music and visual arts programs for them.

When Natalie worked with me at the school where I got sick, she was the youngest teacher and she hated that distinction. Her opinion was treated marginally. Now 13 years later, she finds herself at a school where they hire young, energetic, first year teachers and she is the senior staff. The woman at the school who was the keeper of the "spiral of education" through the grades has left. She had designed each teacher's curriculum, except Natalie's. Now that she is gone, Natalie is finding that she has to explain the actual teaching processes to these teachers who have not been trained to understand the importance of this spiral and only interested in their own classroom. Talk about starting at ground level! Thank goodness she has the best communication skills I have ever seen in a real person and will be a leader. (Years ago at the other school where I got sick, it was discovered that one group of children had a semester of study of Native Americans for four grades in a row before someone thought to complain. This sort of thing can happen if there is no plan, no spiral of education. Native Americans? Introduction in 1st grade, deeper study in 4th grade and intensive study including travel in Middle School. That is an example of what a spiral would look like.)

Natalie was also struggling with the final day presentation of the year and how she was going to produce the whole thing. I was able to come up with some suggestions and we laughed when Natalie said she wanted to have like a Flash Mob after the ceremony and before the party. She asked if I could come. I wouldn't miss it.

Winnie and Oliver (or I should say the Green Lantern with his mask on) where charming and fun and sweet and thrilled with my surprises of a small box of Gingerbread cookies, a huge flower lollipop and a goodie for each of them. Oliver got a sticker book and Winnie got a small white board, both bought earlier in the day for $1.00 each!

I came home to Michael, energized with all the problem solving and my soul filled with happiness from being around the kids. It was hard to settle in to fall asleep. It was marvelous.

Friday, April 5, 2013

Friday Looking Forward to Saturday

The Giant's home opener against the St. Louis Cardinals is this afternoon. My entire family will be listening or watching and half will be routing for different teams! Mom and Chip are Cardinals fans and my sister and I will be jumping up and down for the Giants. We are looking forward to a fun season.

The weekend birthday get together with the neighbors has been postponed a week, thank goodness. I was just not up to it this week. 

After the rehab class yesterday, I was drinking water from a bottle while driving home and aspirated the first gulp. Deep coughing quickly ensued and it all came up. Hopefully, I won't get an infection.

It seems it is going to be too wet to do much yard work this weekend so I have a choice to make: yoga or the other rehab gym. Yoga is local and rehab is the other side of the pass. I am leaning to rehab and maybe some clothes shopping. Fun on a lazy Saturday morning.

But for today, I look forward to an early doctor appointment with mom followed by lunch and good conversations. At 3:30, I am meeting Natalie and her kids before their swimming lesson so we can talk about some of her teaching issues. She needs input. It will be fantastic to see the kids and I always wait for Winnie or Oliver to ask shyly, "Did you bring a little something with you?" I have a small child sized box of gingerbread cookies for each of them and will have them in my purse at the ready. They always squeal with delight! Nothing feeds my soul more than being with children.

Happy Friday!

Thursday, April 4, 2013

Challenges

I almost feel like I got away with something. My yoga teacher was out of town so we had a substitute teach the very small class yesterday. It was fine. It actually was what I should be doing every week instead of the madness that brings me to my knees but, in truth, I missed yoga hell. One woman, who spoke with me afterwards, said it was a bit of a waste of time and she hardly got warmed up. I didn't sweat, barely used my supplemental oxygen so I am looking forward to the rehab class today. I want a tough workout.

My other issue of the day happened before the orchestra rehearsal last night. The woman who was one of the original founders of the little orchestra had returned to play this season. She was the same woman I just told I was not well enough to continue performing with her little violin students. I signed up to play a Christmas concert at a mall with them a few years ago. Well, that worked into a spring concert and then she also wanted to do some summer work. During my final rehearsal with her, she was talking about getting the adults together to work on and to perform ensembles together. NO!!! It would mean three evenings a week in rehearsals while I would rather be spending the evenings with Michael. Plus, I just don't have the energy.

Last night, she was pushing me about my health and questioning why I was not able to play her with group:
You look great. You go to yoga? You work out? How can you still play with the orchestra? Can't you get sick here with all the people?

Very passive aggressive. I thought, okay, you asked:
I am tired. Yes, my doctor told me to take yoga. I work out everyday, which is why I have been able to avoid lung transplants. I play at the edge of the orchestra not within the brass and winds. We don't go to movies, concerts, plays or any place where groups of people gather.

I then had to explain that transplants are not wonderful. They are a treatment not a cure. They will not last forever and only 50% of patients are alive after five years. I told her that if I get a bad cold, it could reduce my lung capacity to 40%, which would be the beginning of the transplant process. NOT GOOD.

She got it. Finally. She tried to hug me then realized that it was not the smartest thing. I told her that Michael doesn't even shake hands anymore. We can't afford to allow a cold or flu to enter our house.

For the first time, she didn't question me during the break. I think we had a breakthrough.

Wednesday, April 3, 2013

Breathing Well into the Day

My yoga hell class is less than an hour away and the goal is to not twist my knee again. It is not 100% but it is mostly healed from two weeks ago. I usually crawl home and recover for most of the afternoon. There is an orchestra rehearsal tonight so I have to be mentally sharp.

Michael's sister, Anna messaged yesterday that she had hurt her back and she was just so tired. Maybe a bit of depression is involved and she needs a bit of a lift so I invited her up for a visit. I'll haul her to my yoga class!

There is wet, drippy fog this morning and rain is due tomorrow. It should all clear for our company on Saturday evening. This is the most social we have been in weeks.

We finally heard from William, who has been super busy with rehearsals in Burbank and now packing for an international summer tour beginning this weekend. They are one of the headliners of the huge Coachella Music Festival near Palm Springs. We are looking forward to seeing him when they are in our area in August.

I continue to breathe well and really have ended my coughing fits, which is such a relief. My numbers in rehab are good and stable. The only thing I worry about is my poor abused liver from nine years of prednisone. I am scheduled to see the doctors at the Liver Clinic in May and just know that they are going to recommend a biopsy. The worry is the possibility of inflammation, which would mean I have non-alcoholic cirrhosis. Deadly. That would mean that I have a lung disease and never smoked, a plastic nose disk and never did drugs and maybe cirrhosis of the liver and I never drink. I have all the damage and none of the fun!

But for today, I will sweat in yoga and love playing with the orchestra this evening after dinner with Michael. A pretty perfect day.

Tuesday, April 2, 2013

Facing the Music, Again

There was a tiny slice off of an end of a delicious ham at the butcher's yesterday. All of $2.00. Michael has it cooking in a pan right now, the smells are delightful and I think I must have some for breakfast along with a bowl of vegetables. Ham was one of the lean breakfast foods my nutritionist suggested. My Easter dress was fine but I felt it did not fit as well as it should have. Thus, I am back REALLY watching every mouthful of food I put into my body for the entire month. That is all it will take. Just a month.

In my mind, my diet is a continuum and where my clothing fits determines where I am on that continuum. So the plan includes more veggies, three ounces of protein instead of four, no extra nuts in the afternoon, lots of water and nothing at all between meals.

The other focus is to make sure I exercise everyday. It has been difficult with so many early morning doctor appointments for mom the past several weeks but now, I am back.

It has been two years since I lost the prednisone weight and I really don't want to have to lose it again. My job is to make sure I don't do anything crazy, just a steady focus, day after day and it will be done. I began two days ago and I can already feel a difference.

My many thanks to you, dear Reader, for make March my best blogging month ever.

Monday, April 1, 2013

Menu for the Week

We had a lovely Easter brunch with mom. It was nice not having to be anywhere or do anything other than being together. Michael and I sat together and chatted after we got home. It was great not to be in any hurry. A nice day.

April begins with a good workout at the other rehab, a few errands with mom then food shopping. The menu for the week is below:

Mongolian Beef - http://recipes.sparkpeople.com/recipe-detail.asp?recipe=1736075

Eggplant and Chicken Parmesian - I cut the calories with much smaller chicken breasts and low-fat cheese. Also, I don't use the amount of oil they recommend.  http://www.genaw.com/lowcarb/eggplant_chicken_parmesan.html

Chinese 5-Spice Shrimp - http://www.lowfatlifestyle.com/entrees/entreerecipes/chinesefivespiceshrimp.htm#.UVmUgXDFXC4

Smoked Salmon Spread - for breakfast or lunch -  I cut calories by using fat free sour cream and low fat cream cheese.
http://www.foodnetwork.com/recipes/ina-garten/smoked-salmon-spread-recipe3/index.html