Living Well with a Bad Diagnosis - Lung Disease

Tuesday, January 31, 2012

Record-Breaking Month

The month is drawing to a close and I am again stunned and humbled by the number of visits to my blog. It has been a record-breaking month.

My thanks to you, dear reader, for your interest. Some readers go back and read the first year of the blog but most just scan it to get the latest medical information. I am grateful that you trust my contacts and information that I received through a variety of sources. I hope it helped. I hope it gave you some ideas or comfort.

What is important while reading between the lines about my life, is that there is hope out there, that it is important to live a rich full life regardless of the disease, family is everything, settle your relationships, exercise and eat well, laugh a lot, travel if you can and hold the love of your life a bit longer, a bit closer, dearer.

But really, what we are learning together is how to wrap this disease into our lives to live well with a bad diagnosis.

My thanks to you.


Monday, January 30, 2012

Sunday in the Garden

What a beautiful day yesterday. It was in the mid-60's in our garden, which is where I spent most of the day. I cut and watered but it needs more attention: hand weeding, dirt turning and hand trimming. I was able to cut the grass and do a bit of trimming but I am making plans to work a bit everyday this week to get it under control.

Michael came home early to watch the final hour of the 50th Anniversary of the 24 hours of Daytona with special interest since his friend Ricky was there this year. During commercials, he would dump my clipping in the recycle bin or just watch me work and chat. After the race and when I was finished, we sat out in the garden for over an hour, enjoying the sunshine together. It was so relaxing.

Then the fun began. We put the top down on the convertible, drove north along the ocean then headed over the hill to the Avenue where we enjoyed an early dinner at his newest most favorite place: 5 Guys and Fries. Ugh! It was not my favorite place at all and I never wanted to eat there again! Turns out I had a previous bad experience pre-diet with a very greasy hamburger and awful mushy fries. Not this time. He had the huge double bacon cheeseburger with fries while I enjoyed the small hamburger without a bun, which was really delicious.

We walked the Avenue afterwards, went by the dutch bakery for decaf coffee and Michael bought a huge cinnamon roll, which he ate the moment we got home. Guess which one of us is naturally skinny? Him! Life is not fair!

Today's plan? The other rehab this morning followed by a butcher/Trader Joe's run. Then, into the side garden where the weeds are calling to me.

Sunday, January 29, 2012

Winter Concert? Done.

The concert presented by the small orchestra I play with went well last night. Unexpectedly well. Many friends and neighbors were present and there was a nice sized audience.

It began with Borodin's On the Steppes of Central Asia. A quiet, interesting way to begin a concert. Next was Haydn's Piano Concerto in D Major featuring a local pianist. She received a standing ovation from the audience. Lovely. Well done. (I love to play any Haydn piece.)

The famous cookie break followed. The entire audience moved to a separate building for free cookies, coffee, tea, apple juice or water. No other orchestra I know does that!

Photo from "Fantasia's Night on Bald Mountain"
The second half featured Mussorgsky's Night on Bald Mountain and Pictures at an Exhibition. Gongs were involved as well as lots of percussion. The young children in the audience were awake and loving all the music.

Gerry (the other bass player) and I were a bit nervous about Night on Bald Mountain. We did just fine. She had a stressful day just getting to the concert since she was flying in at 3:45 and the concert was at 7:00. Normally not a problem, except there was a problem with the plane. They waited. It was fixed then another problem and they had to switch planes. She arrived with just few minutes to spare.

During the intermission, a group of women approached me about our basses. They said they were surprised to see not only one but two women bass players. One is unusual but two?!? We had a good laugh together. They came to chat afterwards and said they are looking forward to the next concert in May. Our groupies!

Saturday, January 28, 2012

Welcome Lipitor and Fish Oil

I met with my endocrinologist Dr. M. yesterday at my university hospital and was pre-interviewed by a new resident. He was soooo very young and looked surprisingly similar to Facebook's Mark Zuckerberg. He was a former drummer who's brother plays numerous instruments and was raised in a musical environment. We talked music for a bit.

After his interview and a quick listen to my lungs, Dr. M. joined us. He asked what I knew of the issue at hand: the possibility of drug therapy to treat my high cholesterol. I told him that the liver doctor felt that even through my extreme weight loss, my cholesterol numbers failed to change. Because of that, he felt it was a genetic issue and, due to future lung transplants, we should be aggressive about treating it so it doesn't become an issue later during the lung transplant process.

Dr. M. agreed. But, he feels that the cholesterol issues are caused by prednisone and its continuous dosage since 2005. So, he wants to begin a two-prong attack:
  1. Fish oil - He told me to buy 500 mgs of Omega-3 fish oil with a blue and green label from Trader Joe's. One is to be taken with food at breakfast and another with dinner. After a week, an additional pill will be added to the breakfast pills. After an another week, a pill will be added to the dinner pills for a total of four pills a day. He said fish oil is also anti-inflammatory and he would be interested to see if this helps my lungs. Interesting.
  2. Lipitor - We are beginning with a small dose of 10mgs once a day for three months. Blood tests will determine if we need to adjust the dosage after the three months period. He feels that there will be a dramatic change in my numbers by then. 
Side effects? Surprisingly, he said that I will probably have them with the fish oil and not the Lipitor! He said most people feel the fish oil in their stomachs. I have a feeling burps are involved. I don't know if that will be an issues for me since I have a Nissen and really don't burp. The Lipitor can cause muscle pain or weakness or hair loss (!) but that is very rare. He said the muscle pain or weakness could be a symptom related to a kidney problem so, stop the drug and call him immediately.

So, we add a new drug added into the mix. A new experiment. I will report back to you, dear reader.

Friday, January 27, 2012

Changes Ahead

Life is changing. It is in the air.

The Sutter Group that operates the two hospitals where I take the rehab classes and workout are making changes to their programs. They are insisting that two of the rehab classes merge which means a lot longer wait to check-in (blood pressure, heart rate and saturation) and to wait for availability of apparatus.

They are also closing the other rehab several times a year for holidays, which has never happened before. They were even opened Christmas morning. And there were a lot of people there. They are also demanding that the rehab staff increase their bookings by 10% which means more people and more cars trying to share a very small parking lot and a very small gym. Changes. Some are fighting it. I am happy to have both places available to me.

Our local orchestra will be performing Saturday evening. I think we are ready but I don't feel confident about this concert. Not a good feeling going into it. We have a new, young conductor with a different rehearsal style. Adjustments. Changes.

My mom is now investigating independent living places within 20 miles of my home. Cost is the main issue as well as proximity to doctors and hospitals. I am thrilled that she is moving closer to us and even happier that she will direct the sale of her house and distributing her possessions. It will be a lot of work but we will help her through the process. Changes.

Today I am meeting with Dr. M. to begin the conversation about cholesterol drugs. My liver doctor arranged the referral to Dr. M who also manages my thyroid disease. He was a former parent at my school. I adore not only him but his wife and two children. The liver doctor feels that my issue may be genetic as the dramatic weight loss did not decrease the number. He wants to deal with it now so it does not become an issue at the time of my lung transplant qualification process. I am bringing all my weekly menus going back almost a year for Dr. M.'s review and suggestions. I have a feeling we are going to begin a new drug. More drugs. I have also heard that this group of drugs are hard on the liver. More changes.

I am going to swing by the Chest Clinic before seeing Dr. M. today. They are on the same floor. I will let them know that I no longer use supplemental oxygen and need to arrange a sleep study to insure I don't need oxygen at night anymore. Imagine, no more oxygen equipment in my home. That would be a huge change.

Funny how January always brings changes. New year. New beginnings.

Thursday, January 26, 2012

Silent Microasperations Articles

There is a huge question of the possibility of GERD and silent microasperations causing lung diseases, specifically Interstitial Lung Diseases (ILD). Here are a few articles and something for all of us with an ILD to consider. Thank you to my friend Joanne for these articles:

What can we as ILD patients do? Get the 24 hour study to test the levels of acid in our stomachs. Some of us had dramatic levels and had silent GERD. Some patients choose to have a Nissen Fundoplication. You can read my experiences with that surgery here:
http://livingwellwithabaddiagnosis.blogspot.com/2009/12/nissen-fundoplication-part-1.html
http://livingwellwithabaddiagnosis.blogspot.com/2009/12/nissen-fundoplication-part-2.html
http://livingwellwithabaddiagnosis.blogspot.com/2011/01/problems-with-nissen-fundoplication.html


If you have an ILD, please discuss the GERD and microasperations with your doctor. Ask for the tests. Consider the surgery. It has been one of the best decisions I have made in managing my ILD to date. GERD is no longer an issue. 

Wednesday, January 25, 2012

Madam Speaker

I got a call yesterday from the Associated Directer of Patient Outreach and Emerging Projects for the American Thoracic Society in New York. He needed to speak with me personally to confirm that I will be a presenter at their annual convention this year. I will now be listed in the formal program for the week long convention.

He had to actually register me as a presenter and Michael as my escort. Badges with happen. He also mentioned that there will be a variety of other fun things for us to attend including a dinner for all presenters. Michael did a little dance when I told him that!

But, what terrified me a bit is that the venue is the huge convention center in the city. The same center where car shows and the Oracle and Apple conventions are held. It is HUGE! I am sure I will be speaking in a smaller room within the center. I hope.

Yikes. It is really going to happen. Wednesday, May 23rd. 2:30- 4:00.

Tuesday, January 24, 2012

Stickers and Valentines

Busy day ahead with the rehab class then a visit with Natalie, Winnie and Oliver. Ethan is in Japan for a week on a business trip so it is going to be a long week for Natalie without him. They have done an amazing job raising Winnie and now Oliver. Both outstanding parents.

Oliver is in love with stickers. We usually stick them on his clothing and even his forehead. I found small sticker books for just $1 each and some cute chocolate filled Valentine's hearts at CVS last weekend. I'll have lots of paper and markers out for them when they arrive then we will work into a snack. Sometimes the snacks turn into dinner, which might happen today.

Winnie is going to make some cocktail-sized crescent rolls stuffed with small little smokies. Perfect activity for her age and also to pass the time since it might be raining outside. Last week, she and Oliver spent a lot of time exploring our backyard together without us. It was a big moment. Oliver was alone without an adult for the first time. It was fun to watch from the windows as Winnie gave him a tour of the secret garden, the swing and even a taste from the rosemary bush. They then picked a few lemons and we made lemonade which she declared, "Delicious!"

I love being around little kids. So much positive energy! And I just melts when Winnie gets really quiet then touches my arm and says, "I love you," and really means it from her heart. I am blessed.

Monday, January 23, 2012

This Blog, ILD Support Groups and Type A Personalities

Michael just asked me if I ever go back and read past blogs to see if I am in a better place emotionally. Honestly, I do read them. When I check my stats and notice a lot of people are reading a particular blog, I go back and read it. I notice my writing style and how passionate I was to getting the facts on paper, so to speak. After blogging my whole story those first few months, I remember feeling a huge weight lifted from me. It now was all out of my body and placed somewhere else. Into this blog.

I think I am still emotionally solid about it all but I do notice that I have learned so much since those first years trying to deal with living with a fatal diagnosis. I was so sick. I didn't really understand what was happening with my body and lungs. Thankfully, my university hospital offered the first ILD Support Group in the world which was committed to educating us about the diseases but also offered a place for us to share our experiences with the diseases.

During last month's meeting, Sally told us that she receives requests from universities all over the world on how to structure an ILD Support Group. They also want to know what type of patient shows up. Does the group become reduced to a "whining" session? How many people come to each and every meeting? What are they like?

We laughed when we realized that we were all Type A personalities, which makes sense. We are people to take control of a problem by educating ourselves about it.

So that, dear Reader is what you are doing by reading this blog. Educating yourself not only about the latest medical research and the facts about this group of diseases, but emotionally how to deal with this new challenge in your life. You, too, can learn to live well with a bad diagnosis.

Sunday, January 22, 2012

Changes to Pulmonary Rehab Routine

I had a fantastic workout at the other rehab yesterday morning. Because of our long weekend walks, I had been thinking about adding a lot more time on the treadmill. My body felt so much looser and better for days afterwards. Why not add the time at a slower pace on the treadmill everyday?

After doing of my normal 12 minutes at 3.4mph, I slowed it down to 3.0mph and walked for a total of 45 minutes. It was no problem. From there, I did the normal rotation of arm bike, recumbent bike then back on the treadmill for an additional 12 minutes at 3.4mph.

On Tuesday, I will approach the new rehab class RN and suggest that I would like to add it to my routine. I forgot to mention that also in the class, I had previously added wall pulleys and wall push ups to the end of the workout.

My body shape is changing after last year's weight loss due to the consistent exercise. People are asking if I am losing even more weight when, in reality, everything is becoming tighter. Stronger. More defined.

This morning, I still feel so loose and strong that it will take a bit of guilt away as I spend the first part of the day watching one football game then our beloved 49ers game this afternoon. We are once again invited to Jim and Kathy's house to watch that game and enjoy another marvelous dinner. Last week it was steamed mussels and clams and the best fish on earth. I am sure it will be as wonderful tonight.

Dare I say it? Okay: Go 49ers!

Saturday, January 21, 2012

Januarys and Warren Buffett

January has always been a month when we make life changing decisions. We had our first date in January. We bought our two houses in January. I began two new jobs in January. Our son was born in January. I joined a group of women with small kids when William was young which enhanced our lives in January. I began the big diet last January. All life changing events.

I always look forward to seeing how the month unfolds.

This year, it started out with an amazing week of rest and relaxation. I had hoped that bode well for the entire year ahead! But, reality took hold. Within days of returning from the marvelous trip, I broke the oil pan in the car, we had a problem with our insurance company, we had a problem with our property taxes and I am still waiting for a problem to be fixed with my medications.

Problems. I hope that does not bode well for the entire year ahead!

What am I contemplating? It has always bothered me that the long term disability insurance which was part of my employment package was a scam. As my lawyer told us after reviewing the policy, every illness had a huge number of exemptions and exposed them to only 24 months of payouts. He said that he doubted that any policy paid out more than 24 months. It was sold as covering 2/3 of income until the ill person was 65-years old. This company is owned by Warren Buffett. Yes, the same man who feels he should pay more taxes.

I was thinking about calling one of our Senator's offices. Why are these policies allowed to be sold? They are not as they are purported to be. It is too late for me but other people are also be duped at this very moment.

The problem? Do I want this kind of exposure? Will Mr. Buffett come after us?

I don't know if I have the guts to take it all the way. Any comments or suggestions?

Friday, January 20, 2012

William's and Possibly Winnie's School

Today is our son's 31st birthday. How did that happen? Moments ago he was a cute little kid hanging around the house. Gone. Into the world. Into life.

When he was 5-years old, he was assigned to a kindergarten at the local school so I went to the open house. Meet the teacher! See the classroom! I walked into the room, looked around and immediately decided that he would never, ever go to that school. It was dirty. In fact, it was filthy and old and worn out and disorganized. It was depressing.

I spoke with a woman in our neighborhood who was a former teacher with a son William's age. She told me about the process of an intra-district transfer to a school way up in the mountains. It was actually in another city but was part of our school district. She encouraged me to fill out the paperwork. I did, he got in but was on the bubble. If another child moved into the school's neighborhood, William would have to be transferred out and back to his home school.

Community Art Fair that supports the school.
My plan? Make myself important at the school so that would never happened. I first became the secretary of the Site Council. I volunteered in the classroom. I then became head of the Site Council. I then became head of the Education Foundation which was the first one in the state just after Prop 13 was voted in. It provided the school with funds from the community to pay for aids in the classroom, a principal and classroom materials. A couple of years later, when a child did move into the area and increased the class size over the maximum, the teacher agreed to teach an extra student - William.

The school was amazing. It had no text books. Each child worked at their own level and in very small groups of 2 or 3 kids. When a long-term assignment was made, the children were encouraged to present their projects to the class in any way they wished: a play, a film, a poem, a song, a speech, a dance. They were taught to be in charge of their own learning. Lifelong learning.

It was a small school under 100 kids where they played kickball in the school yard. What was so lovely was that all ages played together. No score was kept. Winning wasn't the goal. I loved watching a 5th grade boy roll the ball to a kindergarten kid in a very slow and careful manner to insure the younger child would be successful in kicking the ball. And when they did, no one ran really fast to get them out. They would shout encouragement to run faster. But, it was also fun to watch the competitiveness become apparent went the older kids were up to "bat."

When he went to a catholic middle school, he discovered a huge difference in educational philosophy. The students were working from a textbooks all on the same page, all at the same time. He got a bad grade on his first assignment because "he didn't follow the rules." He went way beyond the rules.

The elementary school gave him the ability to think, not just fill in the blanks correctly.

So, it was this week when Natalie went on a tour to the same elementary school to see if it would be a good school for Winnie. Our book club friend Sue is a teacher there. Natalie and I talked about it this week before the tour. I described how the school used to be but didn't know if it still had the "bones" it used to have. Natalie had been to the other schools and looked at other programs but was not in love with any of them. They were all proper. They were all fine. The principals gave the tours.

I got a text from her yesterday. She had been to the school and took the tour. She LOVED that the tour was conducted by the children. She loved the educational philosophy. She loved the physical site, which will be quite a drive twice a day. It is in the mountains, off of a small road and surrounded by trees. What's not to love? Now, the paperwork begins!

Thursday, January 19, 2012

Weight, Clothes, Breakfast and Rehab

I haven't written about my weight in a while. It has been interesting and a daily process. It's all about portions, no nibbling, three meals a day plus one snack, exercise and now we have added walking several evenings a week.

We just returned from our week away in the desert, which could have been a problem. We handled it with our normal run of Trader Joe food and we cooked our own breakfasts and dinners. Though we went to lunch everyday, we watched what we ordered and walked a lot. I came home a couple of pounds lighter.

Looking back to a year ago, I was just in the first month of losing the weight with help of the nutritionist. I am so grateful for his advise and support, which made the 60 pounds leave my body in a very healthful manner.

There is a huge storm due tomorrow evening which means that there will be no yard work again this coming weekend. Therefore, I am planning to go into the gym on Saturday because I plan to not move from the couch during the 49er game on Sunday.

I also have been wearing my skinny jeans. My first pair of Levi's in a couple of decades. Size 10M. I have learned that when I wear clothes that are actually my size and fit properly, I look downright skinny. At the orchestra rehearsal last night, I wore the jeans and a white shirt under a form-fitting, short, light green leather jacket. So many people commented that I had lost a lot of additional weight. In reality, I am about the same I have been for the last six months. The difference? The clothes fit properly. What a revelation.

This morning, I will be wearing the same outfit to meet one of my kids from school who is now a real adult! I haven't seen him in a year so I am really looking forward to hearing about his life. After our breakfast together, I have to workout in the rehab class for the first time since the head RN retired on Tuesday. Changes are afoot. My plan? Keep my head down, make no comments and remind myself that I am not running their program!

Wednesday, January 18, 2012

Whining

I usually hate to whine. I don't believe in it. I believe in just taking care of business. Deal with it. Today though, I just want to whine. I have been awake most of the night worrying about it all.

Over a week's worth of mail came yesterday. Lots of lovely magazines along with several problems.

1.  After we bought the new car three months ago, we got a bill to increase our umbrella insurance policy to include that one car. It was too much and instead of billing us for a total of three cars, it billed us for six cars. I phoned our agent. A new bill came the next month. It was also wrong but an additional $6 was charge for the monthly billing as well as the $6 from the previous wrong billing. In yesterday's mail was the third bill. It was finally correct but they now have charged $12 for the previous bills and another $6 for this bill. I don't mind paying the current $6 but it is not my fault that they never fixed the previous bills. Must phone the agent again this morning.

2. I have blogged about the new e-mail system at my university hospital. I was thrilled that they notified me that they had sent a new prescription to my mail order drug company for renewal of Immuran. That was December 29th. In yesterday's mail was a letter from the drug company that they never heard back from my doctor so the drug was never sent. I phoned them yesterday and they just couldn't explain what happened. Also, I realized that they have the doctor's same phone number as the FAX number. It has been four years and they have contacted my doctor's office numerous times. Didn't have the correct phone number?!?! I am not happy. So, today I have to contact my doctor AGAIN and ask them to resubmit the prescription.

3. The worst. I paid our property taxed on time in December but switched a number by mistake. It was $600.00 short. The letter in yesterday's was dated January 5th and states that if I get them a check within 10 days, I won't have to pay the 10% penalty. Well, today is the 18th. Damn. I was going to go and pay it in person today but realized that it won't make any difference than just mailing it in. So, into the mail it goes this morning.

In better news, the new oil pan for the station wagon should arrive at the dealership this morning and my brilliant husband is going to get it installed this afternoon. I will need it tonight because it is the only car my string bass fits into for orchestra rehearsal. Just a little pressure on Michael. What a great guy.

Also in the rehab class yesterday, my numbers were just fine. The same. Still no supplemental oxygen needed. Wonderful news.

Okay, I promise not to whine too often. But, I somehow feel a bit better.

Tuesday, January 17, 2012

Rehab Farewell

After my friend Cynthia's hip replacement last year, she had to choose a person to take her through the rehab process. She had two choices - a very nice person and a not so very nice person. She was going to choose the very nice person.

Wrong. In rehab, the best choice is the one who will push you past where you ever thought you could go. The one who pleads and shouts encouragements.

I have seen some rehab staff members tell their clients, "That's okay if you don't want to do this one today." Wrong. They are not helping their client.

After our quick discussion, Cynthia chose the not so nice person who she grew to love because she get her back on her feet and walking correctly quicker than expected.

The rehab head RN in my life since September 2005 has been Alyson. She had spent most of her nursing career in ICU before coming to Cardiac and Pulmonary rehab. She set up the systems and the processes which I believe are the best of any other local rehabs. Make no mistake, she is tough. She will give hugs but there is also an expectation that you are working as hard as you can. If not, you soon will be!

I arrived on her door step very ill and very scared. She took me by the hand and, with lots of education and encouragement, taught me how to safely work and push my body to a point where I have stunned all the doctors.

Last year, she only worked on Tuesdays and there were other RN's who covered her Thursday rehab classes. None of them could compare to Alyson. Yes, they followed all the processes and yes, they did the job but....they were nice. Too nice.

Today is Alyson's last day in rehab. She is retiring. I will deeply miss her.

Monday, January 16, 2012

Wash Your Hands!

Sorry to preach but it is important. Everyone around us is struggling with a cold or a few days of a fever. The chore is to keep clear of all the illnesses! Michael has stopped shaking hands with people. Fist bumps are the way to go.

We are taking extra Airborne and vitamin C. We are also staying away from crowds of people. Why, oh why is there always someone coughing around us? So, no movies, no concerts, no children, no people.

Rehab - I listen for coughs. I have learned to stay away from those people, keep my hands away from my eyes, nose and mouth then wash my hands before leaving so I don't bring anything into the car. Also, I use hand sanitizer after pumping gas.

We are now avoiding eating out but always avoid using the salt and pepper shakers on restaurant tables. Dirty.

Those of us with an ILD are so susceptible to colds and infections due to our medications. We just can't fight them off. We can become very ill with just a simple cold or be hospitalized if we get the flu. Let's not do that.

Eat well, sleep well, exercise and we will get through the winter together.

Sunday, January 15, 2012

One Tough Day

I want to go back to the desert. I want to begin again. It was a bad day yesterday.

The plan was for me to drive Michael to our friend Jim's house so they could watch the 49er's game together (what a game, by the way) then I would drive back afterwards when Kathy would be home and join them for dinner. The plan.

They live on the golf course in a gated community. I rarely drive there. We were in the Audi station wagon. I didn't see a speed bump and took it at 25mps. I cracked the oil pan.

We park the car, cleaned the oil up with cardboard and are having it towed to Jim's business this morning so Michael can fix it. Yes, he can fix it but it will take his time away from his business and he hates grease. Really hates grease and oil. I felt horrible.

The football game had begun. But, we then had to drive Jim's truck back to our house so I could have a car to drive us back home later in the evening. We got into the truck - no gas. We got on the highway - tourist traffic. We made our way to the gas station and while Michael pumped some gas in the truck, my cell phone rang but I didn't recognize the number. I waited for the message. It was our security company reporting a break-in at our house.

Quickly, we drove home. No police. No break-in. No nothing. The sensor is defective, we had already ordered a replacement and will install it today.

Way too much drama for one day.

Then it happened. About an hour and a half after I got home and after I watered the garden and continued to feel almost sick for damaging the car, Michael phoned. He asked how I was doing. I told him and he replied, "Hey, it was just an accident. I can fix it. Don't worry."

That is a good man. That is a great husband.

Saturday, January 14, 2012

"Lips for a Cure" Promotion


Mishka Michon from the Coalition for Pulmonary Fibrosis (CPF) sent this promotion offer with Mary Kay Cosmetics in correlation with their "Lips for a Cure" campaign.

Fifty percent of purchases will go to CPF. Offer expires February 29th. Ordering information is below:

It's a new year and a new opportunity to help in the search for a cure for Pulmonary Fibrosis and support the patients and families fighting it.  The CPF/Mary Kay Lips for a Cure campaign is your opportunity to enjoy Mary Kay products and help find a cure for Pulmonary Fibrosis (PF) at the same time!  For a limited time, 50% of your purchase of any Mary Kay product will go to the Coalition for Pulmonary Fibrosis.  Just follow the instructions below and use the code supplied when placing your order.

To order Mary Kay products through this promotion, visit www.marykay.com/kmeyers and type in the code: LIPSFORACURE in the comments section of your order form. Don't forget to include your phone number in the order (only for use by Mary Kay in completing your order). To place a phone order, contact Kim Meyers at (703) 200-8462.

Please share this information with your friends, family and co-workers and ask them to support Lips for a Cure, too!  Post this information on your Facebook and LinkedIn page or include it in your Twitter updates to encourage others to help, too!  If you ask just 5 of your friends to take advantage of this offer, you can greatly expand awareness of PF and help generate funds for this vital work!
Hurry, offer expires February 29, 2012.
To view the email ad, click here.

Sincerely,
Mishka Michon, CPF CEO

Friday, January 13, 2012

Walks for Pulmonary Fibrosis and Home Again

Dear Readers, we are home again. Thank you for your patience. It was a lovely way to begin the New Year: a week in a two bedroom suite with a full kitchen at a resort in Rancho Mirage (near Palm Springs). We talked together, swam, exercised, walked endless miles, shopped, cooked and just enjoyed each other's company. We are so bless to be able to travel, especially without supplemental oxygen for the first time in over six years.

But, back to reality.

I received the below from the wonderful people at The Coalition for Pulmonary Fibrosis. They are organizing fundraisers for research and the information is below. If you are in the Southern California area or near Somerset, New Jersey, you may wish to participate. The information is below.

These walks are in the memory of Parimal Trivedi whose story is also below.

Dear Friends of the CPF,
Please help us advance PF research and PF awareness by supporting our local fundraisers. Happy New Year and thank you for your continued support!

PF Community Walks in memory of Parimal Trivedi
Hosted by sisters Vipa (CA Host) and Jenny (NJ Host)

Join Us:
Somerset, NJ
Saturday January 28, 2012
10:00am, Colonial Park (156 Mettlers Road; Somerset, NJ 08873)
Click Here to Register for the NJ Walkhttp://www.firstgiving.com/coalitionforpf/somerset


Carsbad, CA
Saturday January 28, 2012
9:00am, Poinsettia Community Park (6600 Hidden Valley Rd.; Carlsbad, CA 92011)
Click Here to Register for the CA Walk:http://www.firstgiving.com/coalitionforpf/carlsbad

Can't attend:
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Su Hwang
Director, Special Events
Associate Director, Development

Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd #343
Culver City, CA 90232

888-222-8541 x704


Tuesday, January 10, 2012

Still in the Desert

I can't believe how well I am breathing here. It is over 2,000 feet in altitude and in the desert, for heaven's sake. Both those are usually a bad sign.

We both worked out in the gym this morning and I only had to pull back a little. Afterwards, I felt great. Tall and breathing well. So unexpected.

We are going to visit Michael's sister tomorrow for the day. Looking forward to seeing the family.

We are totally relaxed, eating well, exercising and just enjoying being together.

Sunday, January 8, 2012

Recovering

What a couple of days. We left home at 5AM on Saturday morning and headed south. Our friends Jim and Sue allowed us to stay in their two bedroom suite near Palm Springs. What a gift.

We took a walk this morning then went into town. There is a street here very posh and similar to Rodeo Drive in Beverly Hills. It was fun walking for endless blocks peering into the stores.

The elevation is just over 2,000 feet and I was concerned about my breathing. It has not been a problem.

We had a great lunch then headed back for swimming and enjoying the sunshine. It was 71 degrees here today. Perfect.

So, we are recovering from the holidays and enjoying being together. This is being written from my iPhone.

Friday, January 6, 2012

Hospice

I was thrilled at the announcement that our next ILD Support Group meeting on February 14th will feature Dr. Molly Bourne from Hospice by the Bay. We will discuss how hospice accomplishes their goal for people with advanced lung disease by providing the best quality of life possible.

I haven’t blogged at all about my Aunt Rita. She was my mom’s sister. She was eight-years older than my mom who idolized her most of her life. I could write a book about her but after taking care of her for the last ten years of her life (she was never able to have children), I learned a lot of life lessons. Sadly, they were lessons of “I will never do that” promises I made to both my husband and son. She was a difficult woman who was narcissist and petty. Her stepchildren later described her to me as, “She never forgave an unintended slight.” That was her in a nutshell.

She had a very easy life, financially, so she never had to “put her back into” anything in life. She married a man 25 years older than she was and later married again after her first husband died. She controlled the second husband with her money. So, when old age began creeping into her life, she just stopped. She sold her beloved piano, gave away all the music, quit doing needlework (a lifelong passion), and even gave up walking. It got too difficult so she stopped walking just about three years before she died. Anything that was no longer perfect or easy to do, she stopped and never looked back.

A couple of years after being bedridden, she tried to get out of bed one night to walk out of the small facility she was in. She got as far as the side of the bed when her legs broke when she put her weight on them. After surgery, she lay in the bed with seething anger for eight weeks waiting for her legs to heal. When she tried to walk again, it was painful and not easy. She refused physical therapy after a couple of tries as she would scream when they got her up on her feet.

So there she lay. For years. Being miserable.

She had Parkinson’s Disease. She was on medications that really worked for her. Since she no longer had quivering hands, she believed she no longer had the disease. No explanations could change her mind.

The doctor had recommended several months earlier that hospice become involved as it would be easier to manager her care as she began to quickly deplete. Hospice came in and made things happen quickly. Needed new meds? Done. Needed anything? Done. She was very well cared for and treated like a human being. I loved them. I loved their help.

Rita loved chocolate. I used to buy her lots of goodies for the week and even made fudge for her. The final week I saw her; I did some bookwork and paid some bills while she enjoyed some chocolate. We chatted. She was a bit confused but fine. She asked me if I ran into her parents who had just left the room before I came in. Her mom died in 1954 and her dad died in 1985.

That was a Tuesday. July 2007. On Thursday, hospice phoned to tell me that she was spiraling downhill quickly. She had contracted pneumonia and suggested that we not treat it. Her quality of life was horrible, she was miserable and a death from Parkinson’s is, apparently, a very difficult death. I told them that I would leave that decision to my mom. She and I talked and agreed that we should not treat the pneumonia. She also jumped in her car and came in to see her sister.

Mom and I sat by Rita’s bed all day on Friday and all day on Saturday and returned again on Sunday. The hospice nurses continued to come to check on her. We watched as Rita slept but we had conversations with her at times. On Sunday evening, mom had to return to her home the next morning so she said her goodbyes to her sister. We drove back home to my house.

That evening, the nurse phoned around 10:00 to tell us that Rita had died. We arrived to her bedside before the hospice doctor who had to declare her dead. She arrived shortly after us then sat and talked with us. We told her stories about all the things that Rita had done in her life. The doctor was kind and caring and in no hurry. Willing to listen.

Days and weeks then months later, mom and I would receive letters of support from hospice. There were offers of grief counseling or just someone to talk with. They were an amazing organization.

I know that one day I will experience hospice first hand. I know that they will offer Michael support and help in my management, they will treat me as a human being at all times, they will speak to me whether I can hear them or not, they will make sure that I am not in pain and they will let me died well surrounded by people who love me.

They are the angels working here on earth.

Thursday, January 5, 2012

Surf's Up, Dude!


Endless summer. At least it feels like it. It was in the mid-60's yesterday so I sat in the gardens to begin a tan on my legs. In January, for heaven's sake!

We live in an area where there is a big wave surf contest most years. The waves are huge right now and there is a rumor that the 24-hour notice for the contest will be announced today or tomorrow. Dude! Surf! Sun!

Today, I am returning to the rehab class since Christmas. It will be great to see everyone and hear all the holiday stories. Michael and I still feel that we are recovering from the holidays. As part of our recovery, we will be taking a week off from life and are planning to be lazy. In the sunshine. Around a pool. The anticipation is enough to keep me awake at night. We must thank our friends Jim and Sue for arranging everything for us at an amazing price.

So far, 2012 has been lovely, warm and perfect. I hope it continues!

Wednesday, January 4, 2012

Dreaming of Palm Trees

We are planning a trip to the Southern California desert beginning on Saturday. We wanted to find some sun to warm our old bones where the cold weather had settled. We have some of the clothes washed, ironed and laid out in one of the guest rooms and giggled when we added our bathing suits to the pile. Swimming! Sunshine!

We were feeling a bit smug.

Then, it happened. Yesterday, it was so warm that I sat outside in the sunshine with a good book wearing shorts and a t-shirt. RATS!

Secretly, one hopes that the weather is miserable at home when one leaves for a sunnier climate. Not only am I looking at the extended forecast for the desert, but also for our hometown. They are only 10 degrees apart!

Oh, but what a lovely 10 degrees!

This will be the first trip we have taken in almost seven years that I don't have to tote supplemental oxygen with me. I will bring my oximeter to check my levels, just to be safe. Michael will be able to enjoy the hot tubs and spas but I will stay far away from both. There is just too much of a possibility of dirty water molecules finding their way into my lungs. I will walk in the pool water to cool down but not put my face in the water.

We also will do all the tricks we have learned through are travels beginning with using Clorox Wipes to wipe down everything in the suite from TV remote controller to the light switches, wear my support socks while in the car and at night, check the mattress for bedbugs, keep the suitcases off the carpets and pack lots of nuts and bottles of water in the trunk.

We are counting down the days before we leave.

Tuesday, January 3, 2012

Non-Stop New Year


“Doing nothing is better than being busy doing nothing.” -Lao Tzu

The above caused me to pause this morning. I hate spinning my wheels. I hope I am busy moving always forward. 

This is something that I am trying to be more mindfull of this year: living in the present. I am such a planner and list maker and always thinking and moving forward. I am trying to find the silence in life. The calmness. This does not come naturally to me! It is simple things like driving with no radio playing or no TV on in the house. The silence. I am learning.

But, the reality is that I screamed through the day yesterday. Never stopped a moment. Rehab, food shopping, washed piles of laundry in preparation of next week's trip, made dinner, a quick visit with Jill, Wayne and the boys then POOF off to the city to have coffee with Don and his friend Mindy. We didn't get home until 10:00, which is just about two hours later than my bedtime!

I believe this is going to be a very social year for me.

Today, I was supposed to meet Susan for lunch before the January ILD meeting. There was to be no speaker this time and just sharing with each other. Sounds dull but it is probably my favorite time with the group. I have learned so much from other's experiences. But, with fighting a cough and being on antibiotics, I thought I should not spread it around to the group.

How I hope the day will unfold? Rehab, simple yard work then ironing all those clothes I washed yesterday. A quieter day, I think. A calmer day.

Monday, January 2, 2012

Perfect New Year Day

A perfect way to begin the new year. We slept in then after some breakfast and coffee, got on our walking shoes. The sun was shining and there was a very gentle breeze when we hit the trail along the ocean. We headed north towards the harbor. That was our goal. About half way there, we decided that was enough. There was a restaurant that sits right on the water and they had outdoor seating. We were there around 11:00, had oysters and Michael had a crab sandwich while we toasted the New Year with glasses of iced tea.

The waves were coming in so there was a beautiful long wave break, not common here. It looked and felt like Hawaii. 65 degrees. January 1st, for heaven's sake.

We walked back home and clearly it was enough. We were both done. Before our next adventure, we watched the final 45-minutes of the 49er game. That was a nice break. Then it began. Michael went to the garage to reorganize the car parts for William's car and to remove the outdoor Christmas lights while I began removing Christmas from our house. It took 2.5 hours. Poor Michael climbed up and down the ladder to the attic over a dozen time. Afterwards, I cleaned the guest rooms and dusted everything before running the vacuum. It's clean. Our house is clean but feels a bit empty. It was nice to have the company.

As one of William's Christmas presents, Michael customized a new tablet for him. It matches the green of the 1966 Mustang they are building together.

If this is a predictor of 2012, we'll take it! The day was beautiful, productive and healthy. What more does a girl want?

Sunday, January 1, 2012

And the Year Begins

We were snoring when it happened. Missed it again! We did try though. We went by Ricky and Fran's house after dropping William and Kimberly off at the airport and had a lovely bowl of homemade minestrone soup with them. We were home by 8:00, put a fire in the fireplace and chatted until 10:00. We were both beginning to fall asleep! Off to bed we went.

Unfortunately, the winds kicked up during the night. We were both awakened by the noise around 3:00AM but used the opportunity to wish and kiss our Happy New Year with each other.

2011 was good to us and we're rather sad to see it go. The biggest changes were my loss of 60 pounds and no need for supplemental oxygen after six years. Those were huge changes for the better. The challenge is to keep off the weight and to stay healthy - no colds or flu.

2012? It is the unknown. It is mine for the making. We are already looking forward to my niece's wedding and my participation in the American Thoracic Society's conference. But, I am a bit nervous about my mom. After having an x-ray which reveled bronchitis, it also exposed a spot on her lung. The CT Scan happened Friday and we await the results.

So here we go. 2012. For the good and bad. Life. I am so grateful to still be here.

Happy New Year to you, dear reader.