Living Well with a Bad Diagnosis - Lung Disease

Monday, February 28, 2011

The Oscar's



We watched just bits of the Academy Awards last night. We felt rather silly because we hadn't been in a theater in well over a year and have not seen any of the nominated movies. None. Gawd, I feel old.

Flipping channels, we caught the tribute to the industry people who passed away last year. While Lena Horne sang “Stormy Weather” in the final clip, one of her quotes appeared on the screen:

"It’s not the load that wears you down, it’s the way you carry it."

I stopped dead in my tracks. Isn’t that what trying to live well with a bad diagnosis is all about?

Don’t let the load wear you down. Adjust it. Move forward.

Sunday, February 27, 2011

No Unfinished Business


Michael and I were talking this morning when we stumbled upon the realization that we have taken care of the dangling threads of our lives and we have changed so much since my bad diagnosis.

We now live a very simple, inexpensive lifestyle. 

We now have honest conversations with everyone about my future. 

We now make sure that the relationships with our family and friends are solid. 

We have had all the important conversations between the two of us.

We have no baggage or unfinished business. Everything is settled. If I were to die tomorrow, nothing has been left unsaid. It is a very freeing feeling. The hard work has been done. 

The foundation for the rest of my life has been laid.

Funny how given a bad diagnosis somehow enhances a life.

Saturday, February 26, 2011

Treadmill Books

Someone asked me what books I have read on the Treadmill. So here is the most recent list, some great and some not so great!

I Still Dream of You by Fanny Flagg – excellent
Forever Young – Authorized biography of Loretta Young – simply awful
The Glass Castle by Jeannette Walls – depressing
Up Island by Anne Rivers Siddons – okay
This Time Together by Carol Burnette – excellent
Dear John by Nicholas Sparks – so Nicholas Sparks
T is for Trespass by Sue Grafton – excellent
A Good Yarn by Debbie Macomber – excellent
Run by Ann Patchett – great
Look Again by Lisa Scottoline – gives stay home mothers a bad name. Awful.
Tribute by Nora Roberts – good
The Expected One by Kathleen McGowan - excellent
And several written by Brad Thor


As you can see, dear reader, I get through a lot of books. In the current queue is another Brad Thor book, Sue Grafton’s U is for Undertow and a Lee Child’s book.

Reading an exciting or well-written book makes the time working out on the gym equipment go by so much quicker. I usually leave my current book in the car so I don’t cheat and read a bit in the house.

Friday, February 25, 2011

Suggested Research Project


I have an idea for a research project. After talking with several other women struggling with weight issues, I have discovered that we all have something in common.

We never feel full. 

We are always hungry.

In the past, I could eat a whole pizza all by myself but I realized that the proper thing to do was to have two or three pieces. It didn’t make me feel full. I could eat a Thanksgiving dinner and not feel stuffed. After a big dinner out, Michael would awaken in the morning and say that he still full from the night before.

I never felt that.

How can a person possibly stay thin if they are always hungry? Or, never full.

Something happened when I had the Nissen Fundopliation. Suddenly, I could not eat very much food. Suddenly, I felt and hated the feeling of being full. It was painful. I was still feeling full the morning after eating dinner out even having less food.

New feelings. Different. 

What is it that made the difference? The Nissen involves taking the top part of the stomach and wrapping it around the esophagus to stop acid reflux and its fumes from flowing back up into my damaged lungs. Is there a hormone or something that no longer gives my brain the constant desire for food?

What triggered this change? 

Find this, my friends, and a treatment for obesity could be discovered.

Thursday, February 24, 2011

The Visit

On Thursday after rehab class, I checked my phone to discover that William had called. I returned his call immediately. He said that Kimberly had the next week off and that they were planning to drive down on Friday and arrive sometime on Saturday, if we were up for a visit. YES!

As we were speaking, the housekeepers were finishing the house, the yards were in great shape even with all the rains and I would not have to do anything other than buy food. So simple.

Saturday, I made a three-layer chocolate cake from the February issue of Bon Appetit and the Ancho Macho Chili, garlic mashed red potatoes and cole slaw. I was ready.

They hit such horrible traffic they only made it to Medford, Oregon by midnight on Friday. It would be a long drive all day Saturday. They finally arrived on Sunday after they decided to spend the night with friends in Berkeley.

They looked fantastic and so very happy. The dinner was a huge hit as was the cake. We invited Wayne, Jill and the boys for dessert on Monday night. I was a bit worried that there is not enough cake for two hungry teen-aged boys so; off to the store I went.

I made the famous Fruit and Cheese Pizza on a sugar cookie dough crust covered in sweetened cream cheese covered in strawberries, kiwi and bananas with an apricot jam glaze. I had to be sure to have enough dessert for everyone!

Turns out that we brought everything – along with a lovely bottle of Jordan wine for everyone to enjoy – to their home. We had a great time with them and stayed way too late into the night. Wayne’s mom and her husband were also there as they had a medical appointment in the city the next morning.

I ran lots of errands and went to the rehab class on Tuesday but that night we found ourselves in the city having an amazing dinner at Blue Plate where a friend of Kimberly and William’s works. We met them there as they went up earlier in the afternoon to be with their friend. We got a lot of special attention! The three of them ordered a dinner of small plates, which they shares and I had the steak dinner, which as perfect for my diet and absolutely delicious. The chef there is very creative using ingredients that are interesting like pickled watermelon rind. They split the chocolate molten cake and the most fabulous toasted coconut cream pie. We were there for over two hours. They even served Four Barrel coffee. The earth opened up and the angels sang!

They stayed to hang out with their friend while we drove home to bed! Ah, we are getting so old! On a good note, we found a parking place – a hard thing to find in the Mission – but had to run across four lanes of scary traffic mid-block. I mean really run. I had my new very high heels on, grabbed Michael’s arm and we ran! We were both totally shocked that I was not out of breath afterwards. It was remarkable!

Our last day together, I cooked spinach stuffed pork tenderloin with a side of Swiss chard and a beet salad for dinner. Michael and William worked together in the evening to install the electrical system to the Mustang. I was able to pick his brain for hotel or restaurant information in the cities where we will be visiting soon.

They are leaving this morning. He begins touring next week and will continue on four continents until next April. We probably won’t see him until Christmas except for a local concert. We loving going to the very famous Fillmore Auditorium to see him work with the big band. We used to sit in the VIP section but we mostly prefer sitting on the equipment boxes in a roped off area behind his soundboard at the back of the audience near the bar. But, we know that he is working and really don’t have a chance for any real conversation. It still is so fun to watch him work. So interesting.

Off they head to the snows of the Pacific Northwest.

Godspeed.

Wednesday, February 23, 2011

Ordering Portable Oxygen System

I tried ordering a Portable Oxygen System (POS) from my oxygen provider – Apria – for our road trip. It was a challenge, to say the least.

First, I called my local office and Fran told me that I needed to also have a concentrator to carry with us in case the POS breaks. These are heavy big concentrators. I am not going to haul an unneeded very heavy concentrator in our car for 6,500 miles nor have Michael lift it in and out of our car. Not going to happen.

The local office told me that I couldn’t get the POS without a concentrator. It has to be delivered during our trip. Okay, I thought, I will have them drop it off at Chip and Betty’s house in New Mexico as we will see them on day two of the trip. I gave them their address for delivery and told them they could drop it off on a Friday and pick it up on a Monday. Okay, I’ll play the game.

I talked to Whitney at the New Mexico branch and said, “I have to be honest and tell you that I don’t want a concentrator. I don’t need a concentrator. If the POS breaks, we will swing by any Apria office throughout the country. I am not hauling it with us in a small car for a month. I use 2 liters of oxygen at night and need it only in altitude or if I exercise during daylight hours. I am not on a continuous flow of 6 or 10 liters.”

She told me that they only deliver in my brother’s area once a month. I responded that it made no sense to have a totally unused and unwanted concentrator sit there for a month. Crazy.

She called her supervisor and said that I don’t have to have one.

Yippee!

She also said to call my local office to order the POS to be delivered there for pickup just before the trip.

Thank you very much.

Well, that is when the trouble began. I called Fran again. She sputtered and spit and said that it is just not possible. Then she asked for Whitney’s number and said she would call me back. I waited four hours. Nothing. It was Friday.

On Tuesday, I phoned my best friend Fran. She gave me the national number for ordering the POS. I had a great chat with Diane and here is what I discovered:

In order to rent a POS from them, I had to give them the date and address of every hotel where we will be staying (there will be 15 of them…). We will have to carry a concentrator with us and they only have POS on pulse delivery instead of continuous air. I need continuous air for my disease.

I gave up. I thanked her. I phone the little local company who rented the Eclipse continuous air system to me in the past. It took less than five minutes to make the arrangements. I will pick it up at their offices a few days before the trip and drop if off the day after our trip all for $342.00 for the month.

Bingo. Done.

Tuesday, February 22, 2011

Watching Me Breathe

Michael is at it again. Without me knowing it, he has recently been spending a lot of time in the night watching and listening to me sleeping. He notices changes to the noises I make and the rhythm of my breathing.

My guardian angel.

He mentioned to me this morning that along with the diet and exercise, the use of the oxygen at night is equally important to maintaining my health. I hadn’t thought of that in that manner but he is right.

So many people I speak with who have gone through a sleep study and discovered that they either have sleep apnea or low oxygen during sleep, refuse to wear the oxygen devices. Their excuse is that it is not comfortable. It is a bother.

I had to get used to the nose cannula at night and learn not to sleep on my stomach. Now, it is not a problem. I understand that the C-Pap machines for sleep apnea are a bother and loud but is it worth it to lessen the chances of a stroke or heart attack or even death?

Through the years, I have learned that if we don’t get the oxygen we need at night, we become more tired daily which can trigger depression and other problems.

As Michael has said, for those who need oxygen, it is as important as exercise and diet to maintain our health as we are learning to live well with a bad diagnosis.

Monday, February 21, 2011

Why a Road Trip?



I was telling someone that we are currently planning our spring road trip to the wedding in Tennessee.  They were shocked! How could I possibly travel in a car for that many weeks? How can I travel and be well when I have to limit myself in my normal daily life? Aren't I exhausted every night?

In fact when we travel, I am totally relaxed. I don’t have to do the house work or yard work or rehab or food shopping or make dinner or do the laundry or banking or deal with ordering all the drugs or anything. Nothing, I sit and navigate. We listen to music. We talk. We meet interesting people. I have no stress other than finding good restaurants and our hotels.

It is easier for me to go and visit people rather than have people come to visit us. Visitors totally sap my energy while they are here but also I wear myself out in preparation of their visit. We are so careful not to invite or allow many visitors.

So, the planning for the trip has begun. So much to do: ordering the potable oxygen system, medications, plotting the entire trip, making hotel reservations, pre-paying all the bills, changing the oil in the car and see all the doctors beforehand. Dr. K. always prescribes some antibiotics for me to carry in case I need them. 

All of it needs to be arranged. It is a lot of work but when we climb into the car at 5:00AM on the first day of the trip, it is done. There is nothing else I need to do except look forward to an adventure and being together. It is the best.

So, let the planning begin!

Sunday, February 20, 2011

Lunch at Nordstrom's

I still find it a bit of a challenge to eat out. Since we are heading across the county, I need to learn how to order the food I want, not necessarily what is on the menu. Last week, I had to return some things to the mall and decided to eat lunch at Nordstrom's Café before the rehab class. Since it was early, there were just a few people in the Café.

All the salads had many things I could not eat: orange segments, apples, croutons. Plus, they were so large and Nordstrom's don’t offer a half salad. I really didn’t trust the dressing either. 

Moving through the menu, the soups were creamed. No. 

The pastas? No. 

Finally, I looked at the sandwiches with a different eye. Hmmm.

When I ordered, I warned the lovely lady that it was going to be a bit weird. I ordered the Santa Fe Chicken Sandwich with no cheese and no bun with the small salad on the side. It arrived covered in sweet cooked onions with a side of fresh avocado and another side of a highly spiced mayonnaise. It was perfect and delicious and just the right portions.

The waitress who delivered it to the table asked why I was eating this without the bread. When I explained that I have to eat a very specific diet due of the medications I take, she told me that I should go to Weight Watchers. Clueless.

While this discussion was happening, two lovely older ladies were sitting just a table away from me. They said that had overheard the conversation and began to ask some questions. I briefly told them about the disease and the complications with my body processing some foods due to the long-term prednisone use. They understood it all right away. What really made my day is that they said that I looked “fantastic” and they would never know I was so sick. It made me feel so good and encouraged me to kick up my routine in rehab. Pushed more. Worked harder.

Also, I caught myself in a mirror at the butcher shop on Friday and was shocked how my face has changed. I suspect that I have lost close to 15 pounds so far and it is really showing there and not so much on my hips! Ha! I see Mr. B., the nutritionist, in two weeks. We’ll see how much I have lost this month but I am really beginning to see the results of all my hard work. So satisfying.

Saturday, February 19, 2011

Advice on Possible Exposure

I received an e-mail from Katie, a friend of Natalie’s whom I had met on several occasions. She remembered hearing about my lung disease caused by an exposure in my work place and stated that her sister-in-law believes she might be feeling ill due to the same type of exposure.

She was more specifically asking which molds and fungus she should test for in her building. I used to think the same thing until I discovered that they test the ambient air quality and several surfaces to see what is present, not the other way around.

I guess I would offer this same advice to anyone who believes their environment is the cause of an illness or just a feeling of not being well.

Here is the advice I sent to her:

Oh I have so much to say and yes, Katie, I remember you. The illness can be from mold, fungus or organic dusts. They don't check for a specific mold but they generally take samples to see what is there. The levels are tested against the outdoor levels then compared. I bought a small testing kit at Home Depot and it showed aspergellis (sp?) which is really not what made me ill. Sort of a waste of time and money.

My question to you: Has she developed a dry hacking cough? Or flu-like symptoms? Or a sinus problem? Or does she become short of breath?

Other lung diseases are also caused by exposures. These are in a general group called Interstitial Lung Diseases. About 200 of them. Mine is called Hypersensitivity Pneumonitis. Once removed from the exposure, she should fully recover. The problem is to find out why she is not well and the cause.

There are companies who can come out and can do a full assessment of her work environment.

First, she should see a doctor and share her concerns to get his/her support that there might be a problem. The doctor should write a letter to the company and request an inspection of her environment.

She also has OSHA in her back pocket in case the company does a weak inspection and she continues to deplete. She can call them in.

Please let me know what happens. 

Friday, February 18, 2011

Grieving Completed


Michael realized just these past few months that he has finally gone through the process of grieving.

Grieving for our relationship.
Grieving for having to watch the slow downward progression from 
an illness of his spouse.
Grieving for our former lifestyle.
Grieving that our future has changed and is so different 
from everyone else’s.
Grieving because of the knowledge that our time together is limited.

Six years. That is how long it has taken to get it all settled in his body. Six long years. He said initially, the focus was on all the lawyers and lawsuits and the drama of it all. That is now finished business. Our lives have settled into a routine.

I noticed a change in him. It is like he finally had decided to move forward and to see the positive in our situation instead of dwelling on the things that could have been.

His job has been really good for him mentally. He works for great people who respect him and pay him well. He says he is really happy there. That is such a relief for me.

He doesn’t seem to be so stressed over the bumps in the road regarding my health. He was super sensitive to any changes and would worry so much. I think he now realizes that it is part of the process. I will have my ups and downs and we just have to deal with what comes. And goes.

I feel his focus now is more on the future. We can make plans. We can move forward.

Thursday, February 17, 2011

Finances

Always a difficult subject. Often, I will ask Michael for suggested blog topics. Today, he said that he realized how important having stability with our finances takes so much pressure off and puts all the focus on the well-being of the person who is ill.

It still is so hard. I was the major income earner when I got sick. We lost that income and the settlement from Workmen’s Comp covered just over two years of income. I receive $1,164.00 each month from SSI disability which covers our medical monthly premiums and the cost of my medications. This is a far cry from the money I used to earn. Michael now has a steady income, which helps tremendously.

It still isn’t easy. Most people in our position lose their house and have to file for bankruptcy or live with relatives or are divorced. We have made it through the transition and the hardest times. Now it is our job to save as much money as possible, continue to watch our expenses, be conservative in our investments and try to live every day moving forward.

Sometimes I dream about writing a book or speaking to a crowd of people or bringing in some income to ease that stress a little. I know that I am not well enough to get up everyday and work. I would be dead in a week and realize that I just don't have that level of stamina anymore. But, it would be nice if I could do a sporadic speech or write a bit everyday towards a bigger project. In doing so though, I worry about losing my Medicare and Social Security Disability. It is a Catch-22. 

Wednesday, February 16, 2011

"You Are Too Young"

Before the rehab class each week, we wait in the lobby to be invited to enter the gym. The reason is that the educational piece of Pulmonary Rehab has their class ahead of ours. We have to wait for them to finish before we are allowed in the room.

Sometimes, if there is a straggler, someone will be waiting to have their vitals read before they leave. Last Thursday, that was exactly what happened. There was a new woman to the program who was waiting for her numbers to fall into place before she was allowed to leave. She took one look at me and said, “You are too young to be here!”

The assumption was that I was a smoker and developed emphysema too young.

Alyson, the RN looked at me, I looked back at her then turned to the woman and said with a smile, “And even more shocking is that I am probably the sickest person in the room!” Alyson then responded, “Yes, she is!”

The lady looked aghast. I took off to the warm-up area.

With the diet, I have noticed a change to my prednisone fueled moonface. It is beginning to appear less swollen. When I was with Dr. M-J last week, she said that if she didn’t know all the medications I take, she would never guess that I am ill just by looking at me.

I love that. I hope my perseverance and spirit shines through. I hope the endless exercising is paying off. I hope the diet feeds all the good stuff my body needs to be happy. I hope I remain stable.

Tuesday, February 15, 2011

Diet Drinks

On the music faculty of the school where I got sick, there was a very famous, Julliard graduated pianist. He was accepted into their program as a young teenager and had a stellar career.

But, he did not take care of himself. All he would have during his long days of teaching was liter after liter of Diet Coke. Students would bring them as gifts. He was known for this habit.

While preparing for a concert in front of a famous orchestra back east, his arm suddenly went numb. The concert was cancelled. He flew home for tests. It was discovered that he had a cancerous brain tumor, which had already spread to the rest of his body. He passed away just over a year later.

I always wondered if the huge ingestion of diet drinks was in any way related to the cancer.

I gave up soda including diet soft drinks when I was diagnosed with my lung disease. I used to drink one with lunch at work. In the news last week, there was a huge story about the possible connection to heart and brain problems in people who drink diet soft drinks everyday.

Something to consider.

Monday, February 14, 2011

Valentine Poem

A stranger you were once.
Then, with a gentle look you took my hand.
As our lives engaged,
you lit my life and I held both your hands.
Now that decades have passed,
ours souls have indeed become one.
How fortunate we are
that we have found the love so true
that everyone dreams about.

- Laura Veronica Merodio -

Above is the perfect poem to my Valentine. 


Happy Valentine's Day to one and all.

Sunday, February 13, 2011

Saturday Night Live

Our version. We were invited to the house of our book club leaders last night. They realized that most of us in the book club are musicians so they hosted a live music jam on Saturday night. I think it was also a chance for Jim to play his new gorgeous Yamaha grand piano.

Only one other person showed up. Jack, who plays trumpet in the orchestra, is also a classical pianist who is learning cords on the piano. He brought along some great books. He ended up on the piano and Michael and Jim played guitar. I must say that Michael has not sounded so good on the guitar in years. He was smokin' last night. It was so fun to just play together once again.

Food. Always an issue now, was fine. We each brought a dish. I brought my crustless quiche, they provided a salad and roasted pork both of which I was able to eat. Afterwards, we sat around the table and talked music for a bit before heading to the living room. I so miss talking music. 

Well, we stayed too late again. We tend to do that at their house. Guess we were having too much fun. We climbed into bed at midnight and were awakened at 1:00AM with bursts of light and some noise from fireworks just next door. 

All in all, it was an unusual night for us. It was just plain fun. Lots and lots of fun.

Saturday, February 12, 2011

Mozart Festival



My friend Lois, who is no longer comes to the other rehab, attends the Mozart Festival in Salzburg, Austria every January. I am so jealous. It is probably the most highly regarded music festival in the world.

The most respected musicians perform in one of the many venues during the 10-day festival. Lois often attends a concert at noon, later in the afternoon and another in the evening. She walks between her hotel and the concert venues. It is a very “walkable” city, even in the snow with temperature below zero.

Every year, we get together and to go over the many-hundreds of pages program for the entire festival. This is not an inexpensive experience. The concert tickets alone cost approximately $1,500.00. She also brings all of her photos and talks about some of the most thrilling moments. Before we met, she had sent an e-mail about the sudden surprise appearance of a very famous opera singer which brought people to their feet.

I love hearing all about it. She brings it so to life. I wish I could be there with her but, alas.

We met at a coffee shop across the street from my rehab class on Thursday morning. It was great to see her and I really miss her at the other rehab. We looked at the huge program and all of her photos. It is just a wonderment to me that she went to see a full orchestra with various choirs including a children’s choir sing a Mass composed by Mozart. What makes it so unique is that he actually wrote this Mass for this particular church in Salzburg. To hear it in the room for which it was composed makes it extraordinarily special. She said it was breathtaking.

The two hours flew by, we planned to get together again then I headed to rehab. I so miss talking about music. I so miss my friend.

Friday, February 11, 2011

Quiet Friday



Nothing on the calendar today. Freedom. It has been a crazy week beginning with the orchestra concert last Saturday night, the Sunday Superbowl party, the early Monday morning trek into the city for the doctor’s appointment, the ILD meeting on Tuesday, rehab, yard work, window washing and the orchestra rehearsal on Wednesday night, rehab and the meeting with Lois then Winnie and her family's visit on Thursday and now it is Friday.

Love the blank page. So clean. I plan to workout in the morning and not much else. Maybe I will wash and iron the sheets. Maybe.

Maybe I will take a nap. Maybe I will sit in the garden and read a bit of the latest Fanny Flagg book.

I just flipped the page on the calendar for next week. It is wonderfully blank except for rehab. I need a quiet week to recover!

Thursday, February 10, 2011

Possible Visit

It has been mentioned that Kimberly and William will be here for a visit this month. Apparently, the lead singer of the big band with whom he travels the world is appearing at a festival in the city as a solo artist. As he has a very light voice and refuses to strain his vocal chords – good boy! – he really needs William to make him sound good. Thus, the trip.

William said they are going to try and extend the visit for a few days before or after the concert.

I am already planning. The Macho Ancho Chili was fantastic and he would love it. It will be served with garlic fries and greens. Thanks to Bon Appetite and Food and Wine magazines, I will dig up a recipe for a cake – he loves cake. No pie for him! Maybe we will take them for the lobster roll at the local shack on the ocean.

I love preparing for their visit and seeing them so soon after Christmas. As he will be on four continents touring with the big band beginning in March, I will treasure every moment of this visit. We probably won’t see or hear much from him before Christmas.

Wednesday, February 9, 2011

Pulmonary Function Tests Discussed at ILD Meeting

This month’s Interstitial Lung Disease meeting featured Pulmonary Function Tests (PFT). The wonderful Dr. Eunice Kim walked us through the maze of numbers and alphabet soup.

She began with the reason for PFT:
            Shortness of breath
            Determine severity of the damage
            Progression of the disease
            Pre-op evaluation

Spirometry is usually the first test given. People with emphysema and COPD are also commonly given this test. It begins with regular breathing, then instructed to exhale all the air from the lungs that one can, then told to inhale as much as one can, then exhale as hard and fast as possible.

If you are diagnosed with an Interstitial Lung Disease, the most important numbers to know pertain to Volume Capacity (VC) and Diffusion (DLCO).

Lung Volumes are usually determined using a test called plethysmography, or as we call it, the clear box. The patient is locked into a clear box and measuring the changing pressure and a fantastic math formula, one can get a very accurate measurement of lung capacity using this method.

Diffusing Capacity  measures the exchange of gasses from carbon dioxide to oxygen. During the test, a small amount of carbon monoxide is inhaled then held for a few seconds, then exhaled hard. The computer measures the amount of carbon dioxide exhaled.

The transference of gasses is probably what will kill all of us with an ILD. We will not be able to clear the carbon dioxide from our blood and gently fall asleep – or that is how I am hoping it happens!

So, first ask for a copy of your latest PFT. Learn what all the numbers mean and follow your own progressions. These numbers will vary because of different machines, lab personal conducting the test and the general well being of the patient, though it should not be a huge fluxuation.

Another thing I forgot to mention is that what is most important is the numbers in percentages. They studied a group of well people of all different heights, ages, weights and races to determine what is “normal.” That is 100%. When the results of the tests are read, pay attention to the percentages more than the actual numbers. 

For example, my DLCO may be 13.4 and for my age, weight, height and race, that is 51% of expected. My VC is often in the low 60% of expected. It is easier to compare apples to apples using the percentages.

So, your job is to learn what your numbers are and follow the progress of your disease.

Another note:  There were several people at the meeting whom I had yet to meet. As I spoke with each of them, it was rather interesting when I realized that each had an ILD and also Rheumatoid Arthritis. So interesting that the two seem to go together.

Tuesday, February 8, 2011

New Doctor

A pound of fat.
Another new doctor on my seemingly endless list! The nutritionist, Mr. B. had recommended Dr. M-J to me. In order to see the nutritionist, the program includes a doctor to oversee the weight loss and other possible medical problems that might arise during the process.

This doctor is less conservative than most and he felt that she would agree to the three-month liquid diet weight reduction program for me. As we are leaving for almost a month for Lauren’s wedding, I want to start the program when we return from the road trip.

We met yesterday morning.  She was absolutely marvelous. It was love at first sight! I was an hour early, of course, and she was 30-minutes early we met early! My kind of woman!

We sat and went through all my medications, family history, hospitalizations and surgeries, and medical issues. I have all of these documents saved on my computer and always bring a copy of the medications with me to every doctor appointment.

She listened to my heart and lungs then gave Mr. B. written permission for me to begin the 3-month liquid fast on my date of choice. She also told me that I may be too focused on the numbers on the scale and my body may not ever get as light as I wish. She said that it will be an adventure for the both of us to see where my prednisone and post-menopausal body wants to stay and be happy.

What I do know is that it is going to be a hard fought battle for every pound. I am up for the fight.

Monday, February 7, 2011

Navy Seals, John Wayne and Kidnappings

Rehab conversations.

It all started when I grabbed a paperback in the grocery store for a treadmill book. All of my mentally heavy books I leave at home, the lighter ones stay in the car and come to rehab with me. This one was a supposed to be a treadmill book but turned into one that I could not put down. It was written by Brad Thor. He apparently has lots of contacts in the government and great knowledge about the training and functioning of Navy Seals.

There is a man in the other rehab originally from New York and we have shared interesting conversations working side by side on the bikes. He is a man’s man. He was a marine. He noticed my book. He had read all of Brad Thor’s books and loved each one. Very manly.

He is a John Wayne kind of guy.

Through the years, he has learned that I am married to a man addicted to the Godfather movies, anything John Wayne and Clint Eastwood and all things James Bond.

Last week, I was telling him about a special we saw featuring a group of people around the world who are hired as bodyguards. Former military personal. It is a very successful business. This one featured Brad Thor being escorted around the gang hangouts of kidnappers in Mexico to gather “color” for his next book. It was very intense. It was very interesting. As he was being escorted onto a plane to leave Mexico, Brad Thor commented that he learned a lot during the exercise and that would then be translated into realistic details in his next book.

My friend in rehab mentioned that if any of his books were made into a movie, the current James Bond – Daniel Craig – would be perfect. We’ll see. Fun to consider and debate. Makes the time pass faster.

Rehab conversations.

Sunday, February 6, 2011

Orchestra Concert

The six months of rehearsals culminated at last night's orchestra concert. It was great to finally perform it. Not my most favorite music.

We performed in a beautiful church hall with decent acoustics, I snuggled up behind the cellos so we could play as an ensemble and relaxed. It was a long concert. I felt like I was running out of stamina before the concert was over! It was a long night.

We began with Copeland’s “Outdoor Overture” and continued with Beethoven’s Trio featuring a wonderful trio who performs together for various  venues. They were exceptional. There was an intermission for free cookies, coffee and water then back to the music. We ended the evening with the most difficult and not very satisfying Brahms 2nd Symphony. The fourth movement was a physical workout.

I played well, especially since I was the only string bass and didn’t have to worry if the paid ringer next to me was lost. I also was definitely exhausted by the end. The interesting thing is that since I was the only bass, sometimes it is difficult for me to be heard above the din. Because I was standing in my new high heels (ouch!) in front of the church organ, it worked as sort of an amplifier and everyone told me they could hear me. They were a bit surprised that I really could play. Ha! The other conductor of the orchestra who was in the audience came to me afterwards and said that I was really solid and additional bass as not needed. I was a great balance to the six cellos!

Our new neighbors came with their two children and Natalie, Rick and Melanie surprised me by coming, as well.

I am tired but happy. Rehearsals begin Wednesday with new music for two concerts in May. Here we go again!

Saturday, February 5, 2011

Food and the Superbowl

Okay, this is big. I found a great product that fits all the categories of things that I can eat. I found it in our organic food store. It is called Annie Chun’s Roasted Seaweed Snack. There are two different flavors: Sesame Seed and Wasabi. I LOVE the wasabi. It is so hot and satisfying. I usually have it in the afternoons for a snack.

There are two servings per package – HA! – and each serving has 30 calories, 2g fat and 1g carbohydrates, it has saved me. It has become a passion.

Find it and try it.

It is something that will be a crisp snack while watching the Superbowl at Kathy and Jim's house. It was a bit tricky to have them relax enough about my food situation but Michael led them to the understanding that I will have to bring my own food. They wanted to only cook things that I could eat. Please, I can barely figure out what I can eat how could I possibly explain it all to them?

They will be enjoying ribs and all the fixings while I eat a hot spinach dip with carrot chips, cole slaw, a bowl of the most delicious chili which I made yesterday, pistachios and the wasabi seaweed snacks. Enough!

Friday, February 4, 2011

Garden in January

Usually, January gardens are very quiet but we had a very mild winter. It was in the 70’s most of the month and the plants are “confused.” Some have flowers that shouldn’t. Others are popping up from the earth too early.

As I have not really done any extensive work in the garden since mid-December, it was time for a good cleaning and trimming.

It took two days. The front yard was very much in need and I filled the recycle bin almost to the top. It looked so manicured and spotless when I finished. The next morning, I headed to the new back yard. It was a lot less work but I needed to really hack back the Burmese Trumpet Vine and the rosemary hedge. Weeds needed pulling but it was in pretty good shape.

The following day, I did not move from the couch as every muscle hurt, especially from bending at my waist to weed. Oh, the legs!

It felt great. It looked great. The rain watered it all in within an hour of finishing the whole project. Perfect. Done.

Thursday, February 3, 2011

Rehab Update - February 2011

I guess the biggest news is that Dick has made a “Bucket List.” He told his wife that they would be going somewhere once a month. Last month, they went to Reno with family who own a place there. I told him to call me if he won a million dollars. No phone call. I think he likes the buffets at the casinos more than the actual gambling. He is known to slip a dozen cookies into his pockets "for later." As part of his list, he also wants to see the goat farm south of us and eat at the fabulous restaurant there and the one we have recently discovered close to our house. He wants their 1.5-pound of lobster in their Lobster Roll. I hope they enjoy it! The Saint (his wife) tends to just want to stay home as she is in a lot of pain, which is pushing her to get the needed MRI on her shoulder. If it were to be repaired, it would change his daily life immeasurably as she needs quite a bit of help to do everything. But, he is now getting her out of the house. Dick is still cooking huge quantities of food every weekend but has quit giving me any food. He understands my diet and doesn’t want to mess with it. Last weekend, he cooked Filipino Menudo. Who knew?

Sherman looks fantastic. The doctor just ran a ton of tests and told him he is very healthy except for his emphysemic lungs. What a shame he smoked at all! I expect him to be around for many years. He is very concerned about his 92-year old friend who is a neighbor of Dick’s – small world. She was in the hospital last week and he was visiting her every day. Her husband died a couple of years ago and he visits her once a week to see if she needs anything. He is a good guy.

Barbara, with a helper in tow, showed up last week. She looked very depressed and down and ill and heavy and drugged. I was happy she was there but they sent her home because she didn’t have a note from her doctor to begin rehab again. I hope she comes more often as the social and emotional support will do her some good.

Do you remember  Nasty Nancy? She was written about in the 1/30/10 blog. She is now living in a happy fog in a safe place so she is no longer coming to rehab.

Do you remember Doris? Read the 8/22/10 blog to refresh your memory. She come back to rehab just one time after that event. I can’t say I am sorry. She was poison to the entire group.

Anne, the woman who kept standing me up and the demanded to be part of my private life written about in the 12/15/09 blog is hardly ever at rehab anymore. She now weighs over 260 pounds. She keeps talking about her Weight Watcher’s meetings and wants to meet me at the other rehab. She never has shown up. Thank goodness.

Sweet Irene died. Her husband had recently died and she just deeply missed him.

I opened my life and blog up to one of the women in the rehab class last month. She is lovely and we got talking while working out side by side. She mentioned that I should write about my experiences and I replied that, if fact, I had written it all down. This blog. I gave her the address and the brave soul put her life on hold and read it all in one day. It took all day but she did it.

So many people have come to rehab for a short period then disappeared. We often wonder what happened to them. 

That’s my update!

Wednesday, February 2, 2011

Natalie and Choir/Chorus


While we were setting up for an orchestra rehearsal last year, I asked the conductor if he felt a private children choir of  4-8 graders run through the city’s rec department would be well received in our community. He said it was much needed as there is no chorus taught in our schools. I asked if we could possibly have them perform with us when they get up and running. He said that it would be great.

So, I passed all of this along to Natalie. Remember, I hired her just out of the Conservatory with a BA in Vocal Performance. An opera singer. She became a dynamite teacher. She also taught 2/3 and 4/5 grade choirs. There were often nearly 100 kids on the stage rehearing and she had total control of the group. These kids HAD to be there. It was part of the curriculum. A private choir is so much easier to handle as everyone WANTS to be there.

We taught them so much music. They learned how to sing to not hurt their vocal cords, breathing techniques, how to read music, ear training, to sing in several language and were exposed to a wonderful repertoire of music from classical greats to folk music of the world. 

Yesterday, Natalie had a meeting with the head of the rec department to discuss the possibility of a children’s chorus. There is a big difference between a choir and a chorus. A choir is the main event. A chorus is mostly backup. But, because of people’s uneducated belief that choirs equal church music, she had to label it a chorus.

They have struck a deal. It will begin this summer as a camp and will follow the school schedule for 90-minute classes after school one day a week. She is planning outings to the local senor center and several convalescent homes. Maybe even an assembly at the junior high. It is right across the street from the rec department!

We will see if it flies. I helped write the proposal. I helped prep her for the meeting. I will help with whatever she needs for the chorus to be successful. This is a huge endeavor and I am proud of her for being able to organize it, jump through all the hoops and make it happen.

Tuesday, February 1, 2011

January Blogging Stats

When I started this blog in 2008, I thought I would feel like it was worthwhile if I had ten people who followed it. I also felt like I was just flinging the information out into the great void of the Internet. It wasn’t until July of 2010 that the server began to keep track of the number of hits to my site. I was shocked.

Not only did I get the stats of the number of hits but I was able to see that I was being read in dozens of countries all over the world! Stunning.

What I was even more surprised to learn is that many people just drop into a specific blog topic and not get into the whole story. Kind of made me sad as I feel that the first full year is packed with such good information about living well with a bad diagnosis though it may not be clear by the title of that blog.

What has become clear is that the blog has become more and more popular and January was the peak since the stats have been compiled.

In July, there were 491 hits and October there were 439 hits. But then, something happened. December was the most I have ever had then January happened. I had 1,082 hits to this blog that month. A record. Amazing.

I am humbled. I am pleased. I hope I have offered valuable information. I hope it is interesting.

My thanks to all of you.