Living Well with a Bad Diagnosis - Lung Disease

Thursday, April 30, 2015

Never a Pause

It was a non-stop day. I never was able to pause to take a breath!

Nutritionist: After eating at the Fish Fry last Saturday night and dinner out with British Don last Monday evening, I lost weight! I now have lost 5 pounds. Mr. B. and I had a conversation about how low I can go without making Dr. K. nervous. She needs me to stay between 25-30 BMI to always be ready for lung transplants, if a crash occurs. We did the math together and he thinks I can lose another five pounds, which would still leave eight pounds of cushion to stay above that minimum of 25 BMI. I would have a BMI of 26.2. I am in such a groove that I am going for it.

Company: From the city, I visited the butcher and Trader Joe's to prepare for the week ahead as well as Lee and Jeff's visit on Saturday. The refrig is stuffed.

Mom: She needed some milk so I was able to see her while dropping it off. She had a full black eye but it was not swollen and looked fantastic. She was very happy. She also needed me to run to the pharmacy to see if another drug was available. As I had frozen food in the trunk, it was a quick visit.

Screaming home, I unpacked, ate a quick and very light lunch and within 15 minutes, I was back at the local grocery store. After unpacking those groceries, I began to cook.

Food: I marinated some beef kabobs for our dinner, spiced then cooked some chicken fingers for my lunches for a few days then made some stuffed hard-boiled eggs wrapped in bacon and baked for Michael's breakfasts. But wait! There's more! I then cooked the kabobs with green peppers, red onion wedges and mushrooms along with a fresh artichoke on the side then plated everything.

Orchestra: Last night was the final regular rehearsal before the dress rehearsal and concert next week. It was rough and there were problems in places that were never problems! Gerry and I did great and laughed that the bass section was going to have to hold up the entire orchestra! Usually, Michael is home to help put the string bass in the little car but he was with our friend Jim. He was invited to join a very interesting roomful of people all connected to a major job of a very famous person and I can't tell you more. Michael said it was fascinating. But, we missed seeing each other before the rehearsal.

10PM: I arrived home exhausted. Overly tired. It took a bit to settle in but I slept through the night.

Today:  The long awaited appointment to investigate my hip pain is this morning. I am going early to walk around the parking lot to make sure the pain kicks in beforehand. It is important to show them exactly where it is. Afterwards, I am coming back home and will begin the preparations for Lee and Jeff's visit by washing the windows, doing the laundry and maybe doing the house. Another long day. Another non-stop day.

Wednesday, April 29, 2015

Driving

Mom's surgery went well. She will be swollen and bruised for a bit but her eyes look so much better. Due to a specific glaucoma drug, her eye lids suddenly dropped. I will swing by today to make sure she has everything she needs and that there is no excessive bleeding.

While she was in surgery, I put on my shoes and headed down the road towards the bay to the little airport. Good walking weather as it was cool and windy but sunny. My hip started to hurt within 10 minutes. I have that appointment tomorrow.

It was a long day and I was pretty much done by the time I got home.

By 8:30 this morning, I need to be back in the car to drive to the far side of the city to see the nutritionist. Afterwards, the long drive back through the city to the freeway along the bay will take me to the butcher's and Trader Joe's before a quick visit to mom's. The afternoon will find me preparing for Lee and Jeff's visit, making dinner then I have the final orchestra rehearsal tonight. Lots of energy needed throughout the day.

I have been sleeping well, breathing well and feel pretty good. It is stressful preparing for company so I will be happy when they arrive on Saturday and I can relax. Everything will be ready and there will be nothing more for me to do. I can enjoy being with them.

Tuesday, April 28, 2015

Overwhelmed

It is always interesting for me to watch my blog numbers suddenly increase. Someone just found me. Newly diagnosed. They read through years of blogs looking for information. Craving information. This week, it is someone in Russia. My heart gets a big heavy as I know their journey and that this is just the beginning. I so hope my blog helps.

I am feeling overwhelmed. Mom's eye lid surgery today, my weigh-in tomorrow, preparation phone call for Monday's meeting, my meeting with the hip doctors on Thursday then all the yard, house and food prep for Lee and Jeff's visit on Saturday. They have Sunday matinee tickets to a musical in the city so I think we will head down the coast to our favorite dive for breakfast on Sunday morning.

Monday's meeting: Just one other person in our patient advisory board has offered to meet with representative from all the statewide campuses of my university hospital to discuss a major topic that will be the next step in health care. They wanted patient advice. Guess they will be getting mine and one other's only. Wow. The pressure is on.

When I finished with my workout yesterday, my hip hurt. As I walked on it, there was no pain by the time we met British Don for dinner last night. Somehow, I am going to try to walk before the appointment to again feel exactly where I have pain.

But for today, a nice shower will feel great then a much anticipated phone conversation with my sister-in-law Betty before I head to mom's and her eye surgery. I will be in a waiting room for 2.5 hours with no coffee shop in the area. Hey! I'll bring my shoes and oxygen and get a walk in! Great idea.

Monday, April 27, 2015

Reflections on the Past

The meeting to prepare for the May 28 Grand Rounds event has been postponed for a week, so we decided to meet British Don for appetizers instead. Workout, mom, Don. An interesting day ahead. I did extra time on the treadmill at the other rehab yesterday to see if I would have hip pain this morning. No pain. So, I am going again this morning and, if I feel nothing, I am going to phone to cancel my Thursday appointment.

We had a very quiet day together yesterday. I love those days. We sat in the sunshine and worked on our bullet points for our speeches for the Grand Rounds. It brought back so many memories: being told I had a fatal illness, all the lawsuits and private detectives following me for months, trying to educate ourselves about the disease, grieving a shortened future together, the mania of prednisone, Michael watching me breathe at night just to make sure I was alive, how rehab saved my life. Those four years of our lives on hold before the Worker's Comp suit was settled were extremely difficult. After that, we were able to do the needed work to our home, take a long road trip and just begin to really live with a bad diagnosis.

We never looked back.

I took control over my diet and increased my exercise routines. I finally felt like I was not in"panic" mode and we settled into daily life. We began to extend ourselves out into the world more and more. New friends. New experiences. Growth.

Now, I am convinced this is my life's work. This blog, the speeches I give and will continue to give and living a positive life is how I try to share what I have learned. It has been a process. I am sure there is so much more learning ahead.

Sunday, April 26, 2015

Fish Fry

These people know how to do food for over three hundred people all at one time. It was fascinating. As we are in a small town, people kept stopping by our table to say hello! We were the guests of a very respected Portuguese family so even the local priest stopped by for a chat! But, the food. Oh my goodness! It was simple: tossed salad, rings of fresh fried calamari that looked like onion rings, French bread, small red potatoes and squares of fried fish. Not greasy fried fish. At the very end of the line, they poured an amazing marinara-type sauce over all over the fish and potatoes. My plate was mostly salad, a few calamari and two pieces of fish. Still, I gave one piece of fish to Michael. But wait, there's more! Suddenly, three huge bowls of the largest mussels steamed in a light wine sauce appeared. I think Michael ate twenty of them.

So, the goal after DirectV leaves this morning? THE GYM! I want to get any weight off that I gained last night and I want to see if there is still pain in my hip after an extended stay on a treadmill.

There is a totally crazy week ahead. I can only take one day at a time and try to stay focused. Tomorrow is going to be a challenge: Workout at the other rehab, the mid-day with mom then I will be meeting Michael at work at 4PM for a long drive to the city for a meeting about our Grand Rounds speech. The real challenge is what in the world will I wear for the day?!?

I am sleeping well. Breathing well. Walking well (with no pain).

Happy Sunday.

Saturday, April 25, 2015

Grand Rounds Prep

I have a lot to think about. As speakers for the Grand Rounds event at my university hospital, we are being asked to address some specific topics. So much has happened over the past 10 years that it is hard for me to bring it all down to simple statements but, due to time limitations, I must.

Michael and I are meeting with the head of the event late Monday to talk out what we will be addressing during the May 28 event. What statements will make the biggest impact to the doctors? What do I want them to take away from my experiences? I hope I get some guidance during our meeting and will feel more confident going forward.

In the meantime, I am doing the laundry, making the menu and grocery list for the week and generally preparing for Lee and Jeff's visit next Saturday. I also want to get caught up on my files and paperwork today since the weather is still a bit wet outside. No yard work today!

I am tired and it is going to be a social evening. We have been invited as guests to the local Portuguese community's Fish Fry. Yes, fried fish. Just when I am losing weight, fried fish. Oh, and it is all you can eat! I am hoping vegetables of some sort are also being served. We are the guests of lovely people so it will be a very fun evening. Hopefully, DirectV will show up Sunday morning.

Friday, April 24, 2015

No Show

DirectV never showed up. I phoned around 3:30 and nope. Not on the schedule. In fact, they were scheduled to come to replace our broken equipment in a MONTH!! What?!?!? Someone screwed up. They are now scheduled to come Sunday morning. We will see.

So, I wasted an entire day. I didn't go to rehab class. I didn't do anything but sit here and wait. I didn't even nap as I didn't want to miss them if I was sleeping too deeply. Michael sent me off to bed at 7:30 and I don't remember much afterwards. Feeling better today.

I plan to have a good workout at the other rehab this morning before mom and I come back over the pass for our toe nails later this morning. We always show them off at a fish taco lunch followed by another trip over the pass to take her home.

We are looking forward to a weekend of a bit of rain, a fish fry Saturday night, DirectV on Sunday and a bit of yard work thrown into the mix. Next week begins the true madness before Lee and Jeff's visit next weekend. Fasten your seat belts!

Thursday, April 23, 2015

Finally Caught Sardines

We did it again yesterday. Played hooky. Slept in. Went to a fancy place on the ocean for lunch with all the tourists and even ran into two of the staff from our dentist's office there, who were celebrating their week off.

For two years, I have been trying to find Monterey sardines to cook here at the house. I scoured my local markets, then exotic fish markets over the hill and I even asked my butcher if they had any insight where I could buy them. Nothing. I still look if I'm in a market but, frankly, I have given up.

There they were on the menu yesterday: two for $12.00 over a bed of roasted broccoli and cauliflower. Perfect. They came with heads and tails and bones and I savored each little bite. They were probably a foot long, pan seared then finished in the oven. Though flavored with just some seasoning, they were so rich that I gave the second one to Michael! He had oysters, clam chowder and my sardine.

After lunch, I put on my walking shoes, hit the ocean trail and walked back up to the harbor restaurant! My hip had been better but I wanted to push it to see if it was still a problem. My appointment to have it looked at is next week. Yup, it was stiff after the long walk and I damaged it again getting my string bass into the little car after rehearsal last night. I am a bit sore this morning but not limping!

The rehearsal last night was so focused that my brain would not shut off. Ten o'clock. Eleven o'clock. I finally drifted off but was awake again at 4AM. I am going to be a zombie today.

This morning, I have to get out of here early for the housekeepers then DirectV is expected to arrive by noon.  After buying coffee grounds at Pete's, I'm hitting the trail again while I wait to get back into the house.

Wednesday, April 22, 2015

New Funding for PF

The below is from the good people from the Coalition for Pulmonary Fibrosis regarding a funding stream for research money for pulmonary fibrosis. It is a big deal.


email header
 

The Coalition for Pulmonary Fibrosis (CPF) is pleased to inform you that Pulmonary Fibrosis (PF) researchers can access Department of Defense (DOD) funding for research efforts into the disease for the first time.  Today, the DOD announced the funding deadlines for researchers so they can apply for this funding in 2015!
It is because of efforts behind the scenes with members like you - who are patients, families, professionals and advocates for Pulmonary Fibrosis - the CPF was able to work with Members of Congress to put PF on the list of diseases that can be funded through the 2015 DOD Peer Review Medical Research Program funding program.
Senator Chris Coons (DE) and Representative Erik Paulsen (MN) led the way to include PF in appropriations language that was passed in the omnibus bill late last year.
For comparison purposes, the annual amount of funding at the National Institutes of Health (NIH) that goes towards PF research efforts is typically less than $30 million annually and we are grateful for the NIH's commitment to PF.  This year's DOD PRMRP budget is almost $250 million, giving our researchers access to significant new opportunities to study PF and move the field forward.  
Please read the full press announcement on this game changing news below.  
Thank you for supporting the CPF's advocacy efforts.  To make a tax-deductible contribution to support the CPF's contininuing efforts, click here.
The Coalition for Pulmonary Fibrosis

Pulmonary Fibrosis Researchers Today Gain Access to Department of Defense Medical Research Funding for First Time
Patient Advocacy Efforts Led to PF’s inclusion in $247 Million DOD CDMRP program
 Culver City, Calif. – April 20, 2015 –The Coalition for Pulmonary Fibrosis (CPF) played an important behind the scenes role in an effort that is gaining Pulmonary Fibrosis (PF) researchers access to Department of Defense (DOD) funding for the first time. DOD announced application deadlines today regarding the available funding that comes through the Congressionally Directed Medical Research Programs (CDMRP), Peer Reviewed Medical Research Program (PRMRP) for fiscal year 2015.  PF is one of 41 topic areas in this DOD research program that is, in total, worth $247.5 million this year. 
PF is a disease that affects 200,000 Americans and claims as many lives each year as breast cancer.  PF is a lethal lung disease characterized by scarring that is irreversible, progressive and deadly in an average of three years.  When no cause for the disease can be determined, it is called “idiopathic” or IPF.
In order to be included in research funding for the PRMRP program, a disease must be officially listed as eligible.  As a result of patient organization advocacy efforts, including the CPF, PF is included the program for the first time.
The CPF, www.coalitionforpf.org, assisted behind the scenes in the major advocacy effort led by United States Senator Chris Coons (DE) requesting PF be included on the list of eligible research topics in the DOD PRMRP by having it included in report language in the 2015 Senate Appropriations bill.  The language made it into the omnibus bill that passed Congress and was signed by the President in late 2014. 
The CPF recommends Pulmonary Fibrosis researchers apply for this new funding opportunity and submit their pre-application forms to be considered.   The DOD’s fiscal year 2015 PRMRP Program Announcements and General Application Instructions are posted on www.Grants.gov.  
Important award opportunities and deadlines include:
June 11, 2015:  Investigator-Initiated Research Award – Pre-application due
June 11, 2015:  Technology/Therapeutic Development Award – Pre–application due
June 18, 2015:  Clinical Trial Award-Pre-application due
June 18, 2015:  Focused Program Award – Pre-application due
June 25, 2015:  Discovery Award – Letter of Intent due
Information from DOD press announcement for Applicants:
A pre-application is required and must be submitted through the electronic Biomedical Research Application Portal (eBRAP) at https://eBRAP.org prior to the pre-application deadline. All applications must conform to the final Program Announcements and General Application Instructions that will be available for electronic downloading from the Grants.gov website.  The application package containing the required forms for each award mechanism can be found on Grants.gov.  A listing of all CDMRP funding opportunities can be obtained on the Grants.gov website by performing a basic search using CFDA Number 12.420. 
Applications must be submitted through the federal government’s single-entry portal,Grants.gov.  Submission deadlines are not available until the Program Announcements are released.  Requests for email notification of the Program Announcements release may be sent to help@cdmrp.org
For more information about the PRMRP or other CDMRP-administered programs, please visit the CDMRP website (http://cdmrp.army.mil) or contact
help@eBRAP.org or 301-682-5507
Descrption of the PRMRP Program:
The PRMRP is the official determination of disease areas that can be funded through the DOD. This program, overseen by the Secretary of Defense, in conjunction with the Service Surgeons General, is directed to select medical research projects of clear scientific merit and direct relevance to military health. The PRMRP program funding and disease eligibility increased significantly this year with $247.5 million in funding for 41 eligible disease areas.  Funding in 2014 was $200 million for 25 eligible disease areas.  The nearly $250 million funding amount for 2015 is the largest in the PRMRP program’s history.  Incidentally, the PRMRP program itself was originated by patient advocates.
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 200,000 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 the CPF
The CPF is a 501C(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 28,000 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.
 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Tuesday, April 21, 2015

Pretty Lucky

I was up and out of the house on time for our trip to the gorgeous Indian casino just over an hour north of mom's home. We really had the place to ourselves for a few hours but really, it was so large that we never felt like we were surrounded by people. Nice. We immediately separated then met up at 11:00 for lunch. We had a bad start but got hot around 10:00. After lunch, it was rough again but we both had another run just before leaving. After six hours of playing slot machines, we left about $100 behind to pay part of their light bill. Not bad for so much fun.

We are having Direct TV issues and I spent two hours on the phone with them yesterday after I got home. Two out of three TVs still have issues so a technician is coming on Thursday. I won't be able to attend the rehab class.

Then, I realized that Michael didn't have any good protein for breakfast, other than yogurt, so I made some Mediterranean Deviled Eggs. Besides the yolks, the filling included a bit of mayo, sun-dried tomatoes, Greek olives, basil, Dijon mustard and capers. I just watched him eat two of them and he said they were fantastic. Even made the yummy sound.

So by the time bedtime came around last night, I was snoring within minutes.

Today is rehab class with both my rehab boys. Should be more fun!

Monday, April 20, 2015

Hoping for Good Luck

Just a very quick blog. It is 5AM and I am heading over the pass in thirty minutes to mom's then the drive north through the city, over the Golden Gate Bridge then forty-four miles (past Lucas Ranch, BTW) to the most Vegas-like Indian Casino in the region. We plan to play the slot machines until 1:30 then head home. Mom is so excited she can't stand it. I so hope she does well.

This casino has non-smoking areas but the actual casino really feels smoke-free. They have an amazing filtering system. The only time I have a problem is if someone sits down next to me then lights up a cigarette. I immediately cash out and move alone. I also try to sit whenever possible but I do not stay at one machine too long.

We had a very quiet Sunday and enjoyed the F1 race from Bahrain and Madmen. I hope to sleep well, have a great cup of coffee before taking off and a safe trip to and from.

Wish me luck!

Sunday, April 19, 2015

Contemplation

I have begun the countdown to company. The bedrooms have clean and ironed sheets. What a chore! I began making my lists and menus. In the afternoon sunshine, the yards did not need a lot of work so I only played in them for a couple of hours before the fog and cool air back came in.

It feels like a very contemplative time. The calm before the storm. Very busy but time to stop and consider. Life is chugging forward, I am feeling very positive by losing a bit of weight, the orchestra is going well and it should be a great concert in a couple of weeks, mom's health is good, Michael is well, William is happy.

But, always at the very back of my mind, I am preparing for the moment when my lungs fail. When they crash. When the whole process of transplants begin. Will I meet the requirements? Will they find a heart condition that disqualifies me? Will they find something else that makes them shake their head and say, "Sorry."

Sorry.

My goal is to keep eating well. Keep exercising. Keep those stinkin' transplants at bay. Maybe, just maybe I will hold them off long enough to when they finally crash, I will be way too old for transplants.

Saturday, April 18, 2015

Current Weight Loss Strategy

Mom was devastated. Her eye surgery has been postponed a week in order to insure she has been off some over the counter vitamins long enough to be clear of her system. Fish oil, for example, can be a bit of a blood thinner. She had about five vitamins she had to stop taking before the surgery. Apparently, these vitamins can cause excessive bleeding and may not give as good of a result. She so wanted it over and somewhat healed by the time Lee and Jeff come down to see us early next month. I had to remind mom that it was only a week postponement and she will be insured a better result. It is worth the extra week. She felt better. And I reminded her that we are still going to the huge Indian Casino on Monday. Happiness.

The fog is in so hopefully that will keep the tourists at bay. A triathlon is going to take place on Highway 1 tomorrow morning just as we will need to get over the pass for an appointment for Michael. We will have to build in additional travel time. I plan to sip a bit of coffee while he is doing a quick errand then we have the day together. Love that.

I have an appointment to meet with the orthopedic group at my university hospital at their new campus near British Don. Swanky. On the phone, they decided that I probably don't need a hip replacement (thank goodness!) but will see a physician's assistant to be assessed. Before the appointment, I will make sure to take a walk so that it is sore. I don't want to get there and not be able to tell them where the pain has been bothering me.

Weight: It is amazing how easily it has been to lose four pounds and I think I will have lost another two pounds when I weigh in on Tuesday. Six pounds. In two more pounds, I will be the lowest I have been since the 80s. During the nutritionist's appointment on the 29th, I want to ask him how low I can go without getting too close to the 25 BMI minimum for lung transplants. I know I am close but want to know if I can lose another 3 or 4 more pounds without making Dr. K. nervous.

What has made the weight loss easier? I have a piece of paper on the kitchen counter and every single piece of food or fluid I put into my body is written down. I use a recipe calorie counter on the Internet to insure the correct number of calories I am consuming and staying below 1,200 calories a day. That is it. Oh, and exercise. Sweat index. Must sweat once a day. Somehow, writing it all down keeps me honest with myself and I love looking at the final figures for the day.

Friday, April 17, 2015

Perfect Weekend

Oops, summer is gone. Cool weather today on the coast and throughout the weekend with a chance of rain next week. I wore shorts for the first time yesterday but will now leave them in the closet for another few weeks!

There is a new guy in the rehab class. He is only 43-years old and has a very strange liver disease that kicked in an ILD. A double whammy. There is very high pressure in the major veins of the liver causing it to fail. He is being prepared for a liver transplant soon. What I find so odd is that once he is transplanted, the ILD will go away. Yup, read that again. How can that be? The ILD appears advanced as he currently needs 12 liters of oxygen to do a slow workout. He is one sick guy. I noticed that he is beginning to make some friends in rehab, talking to more people and feeling more at home. The last couple of weeks, he would come in, do the workout and leave. Not a word. I hope he can feel all of our support.

Mom is very excited. She LOVES to play slot machine but all the casinos are not as close as they were at her old home. She doesn't get much of a chance to play. About a year ago, we went to a rather new one north of us and had a ball. Well, we are planning to go again on Monday before her surgery to lift her eye lids on Tuesday. Afterwards, she will be bruised and not going anywhere for a couple of weeks.

Me? A quiet weekend ahead. Yards on Saturday. Hanging with Michael on Sunday. Sounds just about perfect.

Thursday, April 16, 2015

Recipes for the Week

Summer has arrived. It is going to be in the 70s here on the coastside today. Too bad that I won't be here! After the rehab class, I am doing a butcher and Trader Joe run so I won't be home until around 3:00. After unpacking it all, I like to cook my breakfast for the next few days and dinner for tonight. But, as an extra treat, Michael will need to be picked up in town at 4:30! Early! More time together during the week! I think we will be spending most of it out on the swing in the garden.

My hip is bothering me so much that I am going to ask my endocrinologist for a referral to an orthopedist.  It is fine until I do too much then it is sore for a time. Most days, once I get moving, I have no pain at all. What made me decide to have it looked at was my inability to do my intensive walk along the ocean yesterday. I have to exercise to keep lung transplants and diabetes at bay. Hopefully, it is a strain of some sort.

Food for the week. Here are this week's low carb recipes for those of us on prednisone therapy. We just don't process sugars properly. Remember, one pound of protein makes 4 servings.

Breakfast/Lunch:
Fiesta Cabbage - Here - Photo above
Mediterranean Deviled Eggs - Here
Eggplant Casserole - Here

Dinner:
Grilled Shrimp and Sausage - Here - Use half-pound each of the shrimp & sausage to serve 4
Spicy Pork Tacos with Pickled Cabbage - Here - Cut the recipe in half to serve 4
Mushroom and Swiss Chicken - Here - Use two chicken breasts and low fat cheese to serve 4

Wednesday, April 15, 2015

A Simple Day

Michael is on a diet, I am nervous. This is how he messed up his blood sugar last November and ended up in a convulsions on our driveway. After lectures about how many calories he needs to eat and that he still needs to eat snacks, I think he is getting that he cannot just stop eating. Men.

I was at his work yesterday to nab him for our evening out with British Don in the city. He left me alone a few minutes with his co-workers and we talked diets. Sonia will keep an eye on him and nag him to eat, as she does notice when his blood sugar is low. Thank you, Sonia. Mark will keep an eye on his calories to make sure he eats enough. Thank you, Mark.

We had a blast last night, enjoyed a hamburger - no bun for me - and a fun evening seeing old friends who own the restaurant. Afterwards, we went to a place in the financial district Michael saw on Esquire TV's "Best Bars." And it was. He and Don had cocktails as I watched the parade of characters pass by the window. It was entertaining! We got home around 10:30 and felt very young and hip being out on a Tuesday night!

Michael and I have been confirmed to sit on the panel for Grand Rounds at my university hospital on May 28th. We are meeting with the doctors in two weeks to tighten up what they want us to address. I am excited about it all. Michael is a bit overwhelmed.

Today: a nice walk along the ocean before a nap before orchestra rehearsal. A nice, simple day. I am so grateful that I am feeling better, breathing better and alive. Each day is a gift and I want to appreciate every moment.

Tuesday, April 14, 2015

Just Trying to Get Home

On my way home from mom's yesterday, I turned a corner and traffic was backed up on the pass to the coast. Again. It took an additional half hour to make my way to the crash site. A double gravel truck flipped on a major curve and took out all the guardrails. Traffic was only allowed to go by on one lane. It looked nasty and apparently there was serious injury to the driver.

Fast forward four hours. Michael was trying to drive home from work and he turned a corner and traffic was backed up. He phoned. I checked 511.org and it showed the earlier accident. It was such a mess that they were still working on the road.

Living here on the coast can be a challenge. We are always building in traveling time just in case. Could have bad traffic, closed road, need to go around. But, it is all worth it once we smell the clean air and hear the ocean at night.

When I was doing the power yoga class, which I miss very much, there would often be a spot where my leg connected to the trunk of my body that sometimes gave me a jolt of pain. Lately, after running on the treadmill, I feel pain for the rest of the day and it is tender the following day. Alarmingly, it also has been clicking. I think I have developed a hip problem. That is not good. Anything that keeps me from exercising is not good.

I noticed that it was fine in the morning but hurt after I sat with my legs crossed while working on the laptop. No more crossed legs. No more pain. If I sat in the car too long, it clicked when I stood up to walk then felt like it popped in then no more pain. It feels great this morning but we will see how it feels after rehab today. It might be time to ask for a referral. Nuts.

Monday, April 13, 2015

Sunday - Traffic and Nap

We were on the road early, Michael off to his shop and me to the other rehab. It was amazing to see the number of people working out at 9AM on a Sunday morning. It was a good workout but I still had two hours to hang out on my own before Michael would be ready to drive us home. I hit the book store and Nordstrom but found nothing I needed.

We met, we tried to get home, we failed. Traffic, tourist traffic was backed up to even get onto the pass. We headed south to the longer, less travelled, less known pass and made our way to the coastside. Wayne's son needed Michael's help to put a moulding on his car, so we did that before arriving home by 2PM.

Problem? We had not had lunch. I was nervous about Michael's blood sugar. He had food while working and said he was fine but still...I worried. We are seeing his doctor early next month and we don't want convulsions again due to his low blood sugar issues. I made a very quick lunch. Protein. Lots of protein.

We started to watch the Giant's ballgame and the Master's Golf tournament only to drift off to sleep. After a night of sleeping eleven hours, I napped for two hours suddenly awakening at 5PM. Dinner had to be made and the garden had to be watered. After Madmen, I crawled into bed around 8:30 and slept the night until 6 this morning. Remember when I couldn't sleep? Well, not an issue anymore!

Sunday, April 12, 2015

Feeling Good

I got all my chores done yesterday so, here we are at 6AM, watching the Formula 1 Race from Shanghai, having coffee, thinking about breakfast and planning to be over the hill in two hours. Michael needs to do a few things at the shop and I am going to work out at the other rehab. We will then scream back over the pass, hopefully before the tourists, to help Wayne's son put a molding on his car by 2PM. Somewhere in there, Michael is taking me to lunch.

This is my favorite type of day. Not a lot of plans. Just hanging out together.

We are planning our vacation and thinking of driving up to see our son. We need to coordinate his touring schedule but we think it can happen in June sometime. Something to look forward to.

Ron next door brought three different varieties of kale over to me while I was working outside. He has an amazing garden and is currently cursing the gophers who ate his artichoke plants from underneath. War has been declared. For lunch, I cut the kale, spread it on two huge baking sheets, hit them with spray, covered some with a bit of Parmesan cheese and slowly bake them into chips. Yum! Michael thinks I'm nuts.

I am amazed how well I worked in the yards yesterday. My breathing was really good and I think all the working out has helped. No coughing. No shortness of breath. I'm actually beginning to feel...normal. Wow. It has been months.

Saturday, April 11, 2015

Saturday - Into the Garden

Saturday. My stay-at-home-in-the-garden-day of the week. Physically challenging. Mentally calming. After a quick banking run, I will be in the yards, trimming and weeding and saying goodbye to my front lawn. We received word this week that we only need to cut back our water usage by 10% instead of the 35% State-wide requirement. Turns out, our community had really stepped up to the plate and reduced our water needs. Some wealthier communities actually used more water during the same time period, so they are now required to make the 35% cut or face huge fines of $500.00 per day. Yikes.

So, we decided to let the front lawn go but to keep the front plants as well as the back yard. With our reduction in shower time, washing larger loads of laundry and cutting the watering time in half for the entire yard, I think we can still reduce our usage by ten percent.

Mom's upper eye lid suddenly began to droop these last two weeks. We saw the eye surgeons, learned it was a cosmetic issue and not a stroke or other issue. Thankfully. She is going to pay out of pocket to have it repaired. She was so happy and excited to just get it done.

I realized yesterday that I am feeling good and breathing really well. No coughing. Energy is returning. I am so very grateful.

Friday, April 10, 2015

Keep Breathing!

It was a mad and wild morning. After a quick shower and picking up for the housekeepers, I zoomed out of here early enough to swing by Michael's work to make the phone call together for his appointment with the neurologist next month. We met. I phoned. They were busy and we had to leave a message for a call back. Soooo, I gave Michael all the dates mom or I had other appointments for the month and took off on the major commuter freeway north for my eye doctor appointment. By the time I arrived there, someone had returned the phone message and Michael had texted the appointment time and date for my calendar. Perfect. Deep breath.

Eye doctor. Cool dude. Jazz pianist on the side. Due to all the years of prednisone, the pressure in my eyes is high, I am on two different eye drops so my pressure is now stable. Deep breath. Still on time.

Off I head to pulmonary rehab. By the time I sat down with Sherman, I was on overdrive. Time to take a deep breath and get ready to sweat. It was the best workout in months, I did sweat a lot but did not cough at all. That is the good news. The experiment with the prednisone has worked and I am back to my 15 mgs.

By the time I got home, I was done, went to bed 30-minutes early and slept through the night. Mom and I will spend the day together after an eye doctor appointment for her early this morning. So....off I go again. I must remember to breathe!

Thursday, April 9, 2015

Filling My Soul

We realized that we had not seen each other since last Halloween. Winnie and Oliver had both grown and matured and Natalie looked fantastic. Their visit so filled my soul. We shared a snack and pie together before we all played and chatted in the backyard. Winnie has been asked to begin training for the Junior Olympics in gymnastics and showed us some of her amazing moves. Oliver just loved investigating the secret garden all alone and playing hide-n-seek. Michael was equally charm by them after he got home from work. They are such fun and smart and kind kids.

The good news is that Oliver will be entering kindergarten at the same private school Winnie currently attends. It is also where Natalie teaches so they will all be together. As a perk of teaching there, this VERY expensive education will be free. Yup. Free. Both kids. They are also beginning to build a high school so they may receive free education through high school. That, my friends, is a big deal.

As they were leaving, Winnie and I promised to get together for lunch this summer. Another play date.

Rehab today. Beforehand, I need to get out of here for the housekeepers, run to Michael's work so we can call to make an appointment with the neurologist for his 6-month check-up (they have to talk with him) then I have my eye doctor appointment to check the pressure in my eyes, due to prednisone. A busy morning.

Wednesday, April 8, 2015

The Weigh-In

Both my rehab boys were at the class yesterday. We giggled the entire time just because we were so happy to be back together again for the first time in months. Sherman had fallen on a stair last Wednesday, hit a bucket handle and really did damage. He just peeled the skin back all the way up his forearm while trying to protect his face. He was lucky he didn't break a bone.

It was a good workout, probably the best since I have returned from the flu. Afterwards, I weighed-in. Through the years, I have known that their scale was slightly heavier than the scale at the nutritionists as I had done experiments on the same day within hours of each weighing. According to their scale, I lost almost three pounds. I was very happy. I am thinking of going another week of 1,000 calories for another two pounds. It would be nice to be a bit lighter but Michael is rolling his eyes as I blog. He doesn't think I need to lose any more weight. He is a good man!

Every week when I am planning the menus for the week, I ask him if he wants anything in particular. He asked for enchiladas this week. They are a lot of work so I am going to make them early this morning before my walk along the ocean.

During my phone call with 8-year old Winnie last month, she set up a play date for us. It will be late this afternoon, I am going to make some little hot dogs in crescent rolls, Frito's for Oliver and her favorite strawberry rhubarb pie. It will probably be their dinner. I am so excited to spend some time with my favorite children and Natalie. Their life is in overdrive and so very different from mine.

Tuesday, April 7, 2015

It Became Clear

Mom and I walked into the library, bracing ourselves for what we would find in an email sent by someone else. We approached a librarian, told her our tale, she went back to find the original librarian who spoke with mom last Wednesday and that's when it all became clear. Mom had misunderstood the situation. Apparently, she had a different email address on her application to be a volunteer than the one she currently uses. It wasn't until later when we realized that when she moved here and had Comcast, we changed her email address. What happened is that they had sent out emails to everyone and her's kicked back. The librarian had just wanted mom's current email address. That was it. We were so relieved that it was not someone causing problems.

Mom then gave me a tour of the entire, four story library. It was massive. It felt like a very modern, current, university library. Very impressive. I was also amazed at the number of people flowing through the doors, especially young children. Wonderful to witness.

The biggest news is that it rained during the night and my garden looks so happy! It will continue this morning. More, please!

Today is weigh-in day at rehab. I know I have lost the two pounds I had gained last week and suspect it might be closer to four pounds. I feel great. I will report back tomorrow. Also, today is the first day that I revert back to 15 mgs of prednisone as an experiment to see if the cough returns. Should be interesting!

Monday, April 6, 2015

Lovely Easter, Busy Monday

Easter was lovely and we even had a few drops of glorious rain on the windshield! We drove down to Palo Alto in very light traffic for a delightful two-hour brunch. Mom and Michael even had a cocktail! Still trying to drop weight before Tuesday, I ate very lightly and enjoyed lots of iced tea. We made phone calls to Mary, who was going to a nice party at a neighbor's home, and to Aunt Alma in Tennessee. I couldn't reach her so I called her niece. After a promise of having Alma return my call once they reached their destination, I sat waiting with my phone all day. Never phoned. That worries me a bit. I will try to reach her again today.

William sent photos of a very cool mid-century condo with views of a lake in a hot district in Seattle. I think he made an offer. That is a huge step forward for him. He leaves in a week to begin the two year tour with the big group. Back on the road again.

Tomorrow, I will reduce my prednisone dosage back to 15 mgs then wait to see if the cough returns. It would be so great if it settled down and is now gone.

After working out at the other rehab this morning, I will be interviewing the library staff to gather information about the vile email sent to them in my mom's name. We will then take everything to the police to file a report. I want it on record. Will report back tomorrow.

The biggest news of the day is that we are expecting a nice rainstorm to move in this evening through tomorrow. And it is cold! Only 44 on the coast right now. I think people will be dancing in the streets once the rains begin!

Sunday, April 5, 2015

Two Strong Women

We were told of the death of one of our former neighbors yesterday. We were kids of just 22 and 23-years old when we bought the house next door to this nice family, whose last son was heading off to college. He was a fantastic gardener and worked for the State. She worked as a bookkeeper in town. They gently taught us how to maintain a house. What I will always remember is when my arms were so tired holding William for hours, I would go over a for visit where they cooed and rocked him. They were good people.

A couple of months ago, I ran into him in the grocery line, we hugged and talked before I went out to their car to see her. She looked pretty good but thin. Cancer. I knew it wasn't going to be long. I learned yesterday morning that she died on March 28th. They had been married 62-years.

Later in the day, a friend came by to see a car in our garage. He is building one similar and wanted to see the color combination. He and his wife have been fighting her cancer for four years. They have been married for just over 50-years, went to high school together, raised two children and went from poor local kids to millionaires. They worked their butts off. Together.

We stood in our garage and I got him talking. He talked and talked. Later, Michael thanked me as no one else could have handle that discussion. I kept pushing it forward. I know he left us feeling better. He also shared that the doctor has given her less than six-months.

I must say that both of these women are/were strong fighters. It reminds me to continue the battle and not to get lazy. Losing weight helps my lungs. Exercising helps my body. Those are my weapons for the fight.

They both will be with me today as we celebrate Easter with mom. Celebrating a new season. Life continues.

Saturday, April 4, 2015

Diet - Day 2 of 6

Day two of my quest to lose two pounds went well with just over 1,000 calories consumed. Mom and I ate lunch at Mimi's and I had their newest meatball appetizer. Pure protein. They served seven small ones and I was able to bring three home as an appetizer for Michael. He loved them. We had no errands to run so mom and I just enjoyed the day together. One thing she shared terrified me.

While volunteering at the front desk at the city's library on Wednesday, she stopped to say a quick hello to her favorite librarian. She remarked to mom that they should talk about the email that mom had sent to them. Email? Mom didn't send an email. The librarian asked her email address and told her it had been sent using another address. Someone set up a fake account in her name and wrote a vile email referring to her being a volunteer. It clearly came from someone inside the library. It was so vile that the librarian would not show it to her.

It didn't really sink into my head until I was driving home. I phoned her and made a plan. We are going to the library on Monday, asking for a copy of the email then filing a police report. I want it on record. If someone was nuts enough to do something like that to an 86-year old woman, I am very concerned for her safety. I'll report about what happens on Monday.

Today, I will sweat in the yards and make a nice lunch after a quick run into town this morning. It is sunny but cool today. Sweater weather. We are expecting glorious rain on Easter morning. What a gift!

Friday, April 3, 2015

Diet Plan Going Well

Day one of the goal of getting off a couple of pounds went perfectly! Water? Tons. Exercise? Sweated. Food? Three meals for a total of just over 1,000 calories. I was never hungry, so that was good. There was even a decaf Nespresso after rehab. If I can be so very careful with every mouthful, I can lose this in a week or even less. A report is going into Dr. K. from pulmonary rehab on Tuesday, after I am weighed. That is my goal: to be two pounds lighter by Tuesday.

Before meeting mom this morning, I am going to workout at the other rehab to insure sweating today. Water will be packed in the car and lunch will be small. Hopefully, day two will be as light.

The sad news around here is that we have decided to let the front yard die. We have to cut our water usage by 25% and we can't meet that goal without some major pain. The plants in the side and back yards are more expensive to replace and also are older. It would take a lot of years and money to replace them. We were going to replace a lot of the front yard after the drought so, it is just sooner than we had planned. So sad. I feel like I am killing my best friends.

WOW! The fire at the GE Appliance factory in Louisville, KY this morning is huge and so sad. We drove right by that plant almost every day when we were there last May. Thankfully, there appears to be no injuries.

We will be celebrating Easter with mom. She has invited us to a brunch in Palo Alto and as a special gift of the day, it is supposed to rain. Wouldn't that be a marvelous welcome to Spring?

Thursday, April 2, 2015

Weight On - Weight Off

The long drive up into the city gave me time to be really nervous about the weigh-in with the weight management doctor. There was a reason for the concern as I was up two pounds, which was not surprising after the wild weekend. It has to stop here. No way do I want to gain the almost 100 pounds back. Not going to happen.

My plan? A big piece of paper on the counter to write down the calories of everything I eat today, note how much water I drink and whether there was sweat sometime during the day. The big three: food, water, exercise. It will be a visual reminder that I want this gone in a week. Each day for the next week, there will be another piece of paper on the counter. One day at a time. It is here that I must mention that the doctor was not concerned as I have been stable for such a long time, but I can feel the extra weight and I don't like it.

This morning, I am going to the rehab class after picking up the camellia blossoms in the yards. Oh, the gardens. Yesterday, the Governor demanded water cuts of 25%. We will not be watering the front yard anymore as the plants are less expensive out there than in the back. Easier to replace when the drought is over. But, it is so sad to lose all my work. Years of work.

I was thinking back to the days of the first water restrictions. It was also the same era of long gasoline lines and lots of different groups were out of strike. No water, no gas and no services. It was a very bleak time. We had always watched our water and electricity usage, well taught by my parents. Because we were so careful, when they required water cuts, there was no where for us to cut! It was so bad that we could not take showers, just a quick splash. I swore at that time that if the drought ever ended, we would never restrict our water usage again. Those of us who were always careful had the same percentage of reductions as the water hogs. Just not fair. I think that each household should be allowed so much water per person. Period. That would level the playing field.

Wednesday, April 1, 2015

Recipes for the Week

Into the city I go! The weight management doctor is meeting with me early this afternoon for the first of four annual meetings. I am not feeling positive about it as we had a really nice weekend. I did the weekly shopping after the rehab class yesterday, cooked the afternoon away so I am set up for the week ahead. Recipes below.

There is a strings only orchestra rehearsal tonight. The focus is on the harder passages and we can hear each other easier without the brass and woodwinds present. It is a lot of work but the music, at least for the string basses, is not too difficult.

Here are the recipes for my food for the week. These recipes are low in carbs and high in protein as those of us on prednisone therapy do not process food properly. That is why we gain weight if we eat fruit or sugar or carbs, which processes into sugar. I eat 1,200 calories to lose weight and 1,400 to maintain weight.

Breakfast/Lunch:
Shrimp Stuffed Eggs - HERE
Cheesy Chicken and Spinach Casserole - HERE
Tuna Melt (photo above)- HERE and HERE
Chicken Chile Verde Pizza - HERE

Dinner:
Seared Scallops with Pancetta with Brussel Sprouts - HERE
Chinese 5-Spice Powder Pork with Asian Slaw - HERE
Bacon Beef Roll - HERE
Braised Balsamic Chicken with Fried Cabbage and Onions - HERE and HERE