Living Well with a Bad Diagnosis - Lung Disease

Tuesday, March 31, 2015

Updates

Prednisone update: no coughing. The .5mgs increase has been working. I am going to continue it for another week then try to reduce it back to 15 mgs.

Sleeping update: like a baby. Michael had a Boys Night Out last night near Wayne's house, probably under three miles away. A group of six guys got together and talked guy stuff, which means a lot of car talk. He was home by 9:30. I waited up for him by watching part of a series on Netflix recommended by British Don. We fell into bed and I never moved all night. Just as Michael got out of bed this morning, I had been dreaming. Such clear dreams. My step-grandmother and my mom's dad were together and I was so thrilled to see them both. All week, I have been dreaming of dead people. Sounds like a movie script!

Rehab update: going to sweat. Today is the first rehab class in a week. Hopefully, Dick will be back after being ill for months. I miss him so much. I worked out yesterday at the other rehab and did fine.  My left hip and knee have been causing problems but seems to be settling down. No limp this morning.

That's the updates! Happy Tuesday!

Monday, March 30, 2015

Wild Weekend - Done

I could have sworn it was a Saturday! Yesterday, I did all of my normal Saturday chores of yard work and ironing and cooking. I guess I had to pay for taking Saturday off to recover from taking Friday off. Does that make any sense at all?

It was beautiful here with lots of sunshine. We were both in shorts during the late afternoon while sitting on the garden swing, listening to music and talking about everything we forgot to share during the week. I love Michael's work stories. Afterwards, we had a light shrimp salad over butter lettuce. After such a wild weekend, I am nervous about Wednesday's weigh-in with the weight doctor. So, I will be sweating at the other rehab this morning before spending the day with mom. She has an appointment with the hearing aid people at Costco.

Food. I have long been intrigued with pork belly. It looks so good in the butcher's case and I had my first taste of it in a restaurant in SF with British Don last year. It is a bite of crispy skin, a layer of fat then it melds into pork loin. I checked into cooking it and was overwhelmed by the process so I gave up. On Saturday, British Don gave me a piece to take home. The research was on. I found a very simple process of scoring the fat layer, covering it with Chinese 5-Spice powder and salt, marinating it for at least two hours, cooking it at 500 degrees for ten-minutes then reducing the heat to 350 degrees for two-hours. Well, I cooked it last night, cut a small cube and OMG! Crispy, oozy, tender meat. I sent some off to Thomas at Michael's work. The rest will have to be eaten by Michael as I think it is the second most fattiest food one can eat, goose liver winning the top award!

Sunday, March 29, 2015

Malaysian Race and Dinner

Formula 1 Malaysia. The replay is on right now while I blog. It should be a great race as the qualifying was a bit of a shakeup. Mercedes did not qualify number one and two. What a shock! Vettel, new to Ferrari from Red Bull, snuck between them. We will see how it ends.

Last night, we ate Malaysian food! We met British Don in the city, drove to the very hip area called Union Street and ate at an Asian fusion restaurant. Amazing food: hot pepper calamari, shredded green papaya salad, spring rolls with peanut sauce, hot roti with curry and yogurt sauces. Afterwards, we made our way to the famous bar/restaurant owned by the former mayor, which was filled with screeching young women. It was early and the bartender told us by 10:30, the place would be packed. It was so loud at times that I couldn't possibly imagine what it would be later. I started chatting up the couple next to us. She lived a block away; from Columbus, Ohio; went to the University of Wisconsin at Madison and Jewish! We talked food! She told me I did a good job on my Christmas brisket! She asked how long we have been married, she remarked that her parents were celebrating thirty-years and that she was the only one of her friends who still had married parents. She was shocked that we will be celebrating 42 years in September.

We wove our way back through the city to Potrero Hill to drop British Don off at his loft before enjoying our drive back down the coast. We were in bed before 11:00!

Today, I need to work off the food by doing hours of yard work and drinking lots of water!

Saturday, March 28, 2015

Our Day Off


We had a very nice, restful day playing hooky yesterday. It took far too long to trailer a car from the coast over to the shop, so lunch was not at some exotic place. Michael's blood sugar was in need of food so I suggested the fantastic grilled hot dogs at the Stanford Shopping Center. We worked our way down to the cute little storefront, enjoyed the hot dogs while sitting outside in the sunshine. Restful. Relaxing.


We drove through the Stanford University campus and it always amazes me that all the land of the original "Stanford Farm" can never be sold. So, the shopping center, university, hospital, houses, businesses are all on land leases. Imagine the income that generates! We drove past the Hoover Institute, above the nuclear accelerator, past the big radar perched on a hill on a walking trail and saw Stanford property as far as the eye could see. Quick history lesson: Leland Stanford was one of the Big Four of the Central Pacific Railroad conglomerate of early California. He, along with Collis Potter Huntington, Mark Hopkins and Charles Crocker, created the first monopoly. The Stanford's only child, Leland Stanford, Jr. got typhoid before his 16th birthday while on the Grand Tour with his parents. He died weeks later. Returning to California, Stanford told his wife, "the children of California shall be our children." Thus, the university opened in 1891.

Down south we headed to the long pass through the mountain. On a weekend, this would take maybe hours due to everyone from the Silicon Valley heading to the ocean in Santa Cruz. But, on a Friday afternoon, it was free of traffic. A joy. A difficult, windy, road but so beautiful through the trees. We headed to the rebuilt downtown area. It was pretty much destroyed during the 1989 earthquake. It is now a charming one-way street lined with interesting stores and restaurants. And ice cream. We had our first ever experience with Stone Cold Creamery, though we had one in the smallest cup while sitting in the sunshine. It was divine!

We dragged ourselves back to the car and headed north along the ocean. The fog was just hanging off the coast and as we continued north, the fog came onto the shore. By the time we got to the county line, we were shrouded in fog. We drove by our favorite Ano Nuevo and waved at the huge elephant seals, drove by a very famous surf area for the professionals, there were white caps on the water so there were lots of people enjoying their sports and we paused by our favorite lighthouse before heading home. There was just a bit of sunshine and it was right over our house. It felt great to get out, spend the day together, wander around, miss a lot of weekend traffic and feel relaxed at the end of the day. Playing hooky.

Friday, March 27, 2015

Looking Forward to the Day Off

I just woke up two hours later than usual. Guess I needed that and this great day off. Michael is moving a car over the pass this morning so I will follow him and we will take off from there. Where? Not decided yet. He gets to choose where we go today. 

Mom and I spent a few hours together yesterday as we usually see each other on Fridays and I have other plans. We hit the Dollar Tree then went to the Avenue for a fantastic lunch at the Dutch Bakery/Cafe. Afterwards, we drove through the beautiful area where I grew up, saw our old house and drove back to mom's the long way. It was nice. We talked non-stop.

Michael and I sat in the garden after dinner last night and talked about our speaking during Grand Rounds on May 28th. I have my speech written and ready to be reviewed but I realized pretty quickly that Michael is not going to be able to read a speech. He has never spoken in front of a large group of people. He has never given a formal speech. After asking the doctors on the patient advisory board about the specifics of what they want him to address, we will list the topics and talking points. He thinks that will work for him after lots of practice. I will probably mess up and he will nail it!

My cough has lessened. The increase of .5 mgs prednisone is working. I will continue on it for a week then reduce it back to 12.5 mgs to see if the cough returns. Sadly, it may become my new normal.

Thursday, March 26, 2015

Just Hanging

Suddenly, with Anna coming down with a nasty cold, canceling their visit and my to-do list meaningless, yesterday I did very little. It was fun to take the day off, to go into town, put gas in the car, read a good book in the garden for an hour, write a draft of the speech for the event we have been asked to make a presentation on the 28th of May and just relax. A nice, quiet day. I even played hooky from the orchestra rehearsal last night.

With the housekeepers due this morning, I am going to spend a few hours with mom. What I am really excited about is tomorrow when Michael and I take off for parts unknown. Together. In a convertible. Destination yet to be determined.

It is weird. Several times last week, I would swallow wrong and choke. Sometimes that can turn into an infection, so I have to keep an eye on it. But, I have noticed that I am beginning to cough. Not a lot. Not a deep cough. Just a sudden, little, cough. Remembering when I tried to reduce my prednisone from 15 mgs to 12.5 mgs several years ago, I coughed constantly. Apparently, my lungs needed the support of 15 mgs. So yesterday, I took an addition .5 mgs to see if it helped reduce the coughing. When I take my morning meds, I will take 20 mgs and monitor my cough today. If I see no change, I will contact Dr. K., share my experiment with her and ask for some antibiotics due to an infection from the swallowing incidents.

Wednesday, March 25, 2015

Interesting Meeting

It was a wild ride but we were the first to arrive to the meeting of the patient advisory board yesterday. Timing for my hair coloring and facial was perfect and I made it to Michael's work with 15 minutes to spare but he was running late, thirty minutes late. The ride up was fast and almost miraculously free of traffic. And we experienced another miracle, a rare disability spot. Free parking.

The meeting was fantastic, Michael spoke for the first time and we all said our goodbyes to the coordinator of the group. She and her family are moving to the other side of the world. What a wonderful life! The new coordinator was introduced to the group and after the meeting, she shared with me that her dad had been recently diagnosed with familial IPF. I offered to speak with him, if she thought it would help. They are still in the panic phase of gathering information and trying to find their balance again. I so remember what that felt like and that I had wished there was someone I could talk with in a similar situation.

It is interesting, as these meetings continue, the attendance has grown smaller and smaller. Last night, it was tiny. There were four doctors, one coordinator, one assistant and only seven patients. A very vocal seven but still only seven. We began with nineteen but I think maybe this was the plan: start with a larger number of patients but only the truly interested will attend month after month. I rather liked it. Very manageable.

I must say that I was rather stunned while saying our goodbyes to the two doctors who also head the group, one said, "I loved your comments and everything you said this evening." Wow. Thanks.

Tuesday, March 24, 2015

Oxygen Dependency

Although I can't blog about the patient advisory board meetings at my university hospital, a meeting is this afternoon. They are stimulating, thought provoking and challenging. We leave feeling like we have helped a process. Moved the yardsticks forward. But frankly, I love the drive up and the drive home. Michael is usually a bit nervous before the meeting but very chatty and excited about all the discussions afterwards. And they feed us a very healthful dinner!

Before the meeting, I am having my hair colored and a facial. Time will be tight so I will have to apply makeup in the car while Michael is driving and completed when we park at the hospital. Early this morning, I am going to wash and iron our sheets, make some sugar-glazed walnuts for a friend's parents and our company, pick up the fallen camellia blossoms in the garden then make some lunch. It is going to be a full day.

I am feeling a tightness in my breathing. My saturation readings were still above 94% but I felt I needed a bit of oxygen hauling in the groceries yesterday. Someone asked me if I felt that the more I used supplemental oxygen, the more I needed it. Nope. I began to use oxygen ten years ago and have continued to use it at the same rate the entire time. As the disease progresses, I expect to need more. Maybe I am coming to that time. Recovering from making the bed and other chores seems to take longer and I notice my breathing more than usual. When I think back to when I actually got the disease in late 2002 yet was not diagnosed with an ILD until 2004 and Hypersensitivity Pneumonitis in 2005, I am amazed that I am not totally dependent on supplemental oxygen all these years later. I credit my workouts.

Monday, March 23, 2015

Welcome to the Spring Garden


We tried to go over the pass yesterday morning but it was closed due to a nasty accident, so we headed south to our favorite dive. After an early lunch, we walked the main street and wandered into this very expensive but very creative and once-of-a-kind store. We found it! We have been looking for something to hang above the horsetail bamboo. Something unique. It is made from a farmer's disc that works the dirt in the field and the center is woven copper. Metal. Michael loves anything metal.

Here are the promised photos of the back garden. I will post the front garden photos soon:

Close up and far view:







































The Back Garden





























































The Secret Garden Entrance:



The first rhododendron blossom and the group of Bird of Paradise hanging out near the bird bath:


Sunday, March 22, 2015

Sleep! Thank Goodness!

Sleep has returned! I slept almost eleven hours last night. Whatever it was has passed, thank goodness! Maybe it was all the work I did in the gardens or cleaning every bit of the stove and oven and hood yesterday.

Gardening can be dangerous business, especially for those of us with thin skin due to long-term prednisone therapy. I was cleaning around the bottom of the rosemary bush, which is ornamental against the mailbox structure. It got me on my left arm. It took off just under an inch of the top layer of skin leaving a lovely flap. I quickly put a pressure bandage on it and continued on with my work. It is very sore this morning and I think the flap will eventually fall off once a scab has formed. It is big and ugly.

But, the big news is that I did everything on my list for the entire weekend. Today, I am hanging with Michael. We are going over the pass this morning, I am going to workout at the other rehab and we are going to lunch together. A rare treat.

Whenever we are expecting company, the night before they arrive, we go out together. It is our last night of "just the two of us." Sometimes it is a ride down the coast to our favorite dive or fish tacos in town or even a fabulous Mexican restaurant where we are the only non-Mexicans in the place. We love that. It is a guarantee of authentic, good food. But, it is the time to get caught up on everything we have not talked about during the week and will not be able to check-in with each other while the company is with us.

Tomorrow, mom and I will spend the day together, do the food shopping for our company and buy a pound of See's Candy for Doug, who has a candy addiction. It will be on his pillow. Anna loves good soaps, which will be on her pillow.

I can't wait until they arrive!

Saturday, March 21, 2015

Weekend Filled with Chores

I slept for nine hours last night! The sleeplessness curse has been broken! Or, I was totally exhausted and finally passed out! I feel like I could conqueror the world today! This is the final weekend to do most of the house and garden chores in preparation for Anna and Doug's visit. Anna: the most organized and clean human on earth. The pressure is on.

The timing was perfect yesterday for mom's shot in her eye and picking up Michael from work to head to SF to bring dinner to British Don: Rack of lamb and a huge Greek salad. We arrived earlier than usual and got home before 10:00. I don't remember mush else. Glorious sleep!

It is overcast and a very small amount of rain is in the forecast for Sunday/Monday. That will kick back my window washing until Tuesday. Other than that, everything else should be completed today or tomorrow. I am itching to get started!

Friday, March 20, 2015

And the Weekend Begins


Michael's Aunt Jeannette was buried yesterday in Illinois. She embodied kindness and love for everyone. Mary is deeply mourning her oldest sister. We are so grateful that we spent some time with her and Uncle Elwin during our road trip last May. May she rest in peace.

We had planned to meet for a nice dinner on the other side of the pass after mom's shot in her eye late this afternoon. There is only one problem with that: we forgot we arranged to bring dinner to Don's tonight! Duh! Thank goodness the menu is very portable: appetizer dip, rack of lamb, Greek salad. I am going to cook the lamb at his place while we enjoy the appetizer. Before I leave home this morning, I am going to chop all of the vegetables for the salad, mix the dressing and bring it all to mom's refrigerator for the day.

No whales were sighted while driving into the city for my weight in yesterday morning. I am stable, weight-wise. Nice. Even without a lot of sleep, I wanted to go to the rehab class to workout. After the class, I made the appetizer for tonight.

I was up at 1:30AM but got back to sleep before 3AM. I am hopeful that I make it through the day and evening without exhaustion as I have a big weekend ahead. The final weekend. The final assault on the yards and the house before company arrives on Thursday. I have a long list of chores to be completed by Monday.

Happy Weekend!

Thursday, March 19, 2015

Running on Little Sleep, Again

The orchestra rehearsal was excellent as all four pieces are coming together. The woman who played cello in front of me was recently from Germany. She and her tech industry husband accepted a job offer, moved from German and into the Silicon Valley only to hated it. It wasn't until she found our little orchestra and fell in love with the coastside that they actually moved here less than six months ago. She mentioned that they were taking a three day trip to LA in two weeks. It will be their first experience with the Southland.

Their focus was primarily museums. Bingo! Handing me a piece of paper, I began to make a list of all the museums and other things to see and do in LA. She was thrilled. After the rehearsal, she asked me if they needed to bring formal wear. HA! LA?!? Nope, casual. They weren't planning to dine in fine restaurants. It was fun to relive all of our trips to LA and choose what I thought they would appreciate. I picture them in my mind standing at the Griffith Observatory and taking in the entire basin.

Very little sleep again last night as I go into the city for a weigh-in this morning. The rehab class is afterwards but I may just come home if I am feeling the lack of sleep. Yesterday, it was amazing what I was able to achieve before a much needed nap: a long walk along the ocean, trimmed three scrubs in the garden, washed the front windows, washed the front door windows, washed all the towels in the guest bathroom, cooked my lunch, took a shower, cooked dinner and I think I am forgetting something. A week from today, our company arrives.

Also at rehearsal last night, I was able to asked where exactly the whales were hanging out. It was the same spot Michael and I spotted them through the years. I will be driving right by there today so I am going to keep an eye out for them. While Anna and Doug are here, we might just go up to have a look.

Wednesday, March 18, 2015

11:58PM

11:58PM. It seems to be the time I awaken each night. Last night? 11:58PM. I gave myself 30-minutes to drift back to sleep before pulling up camp to move to the couch. After a very short few minutes, I fell asleep until 5:30AM. I feel so much better today. Yesterday, functioning with very little sleep, I was plain dangerous. When Michael got home from work, he found me asleep in front of the TV.

In the morning before rehab, I tore apart the refrigerator, washed everything then filled it full of groceries after the rehab class. On the weekend, I am going to clean the oven, stove and hood as part of my campaign to prepare for Anna and Doug. They arrive next week.

Sherman and I heard from Dick yesterday. The infection in his bladder had cleared up and the tests revealed that it had not done any damage to his kidneys. That is very good news. He is planning to return to rehab next week. It will be good to see him.

I love Wednesdays. It is the only day of the week that I stay on this side of the pass. A walk a long the beach is planned for this morning and some trimming in the yards is planned for after lunch. There is an orchestra rehearsal tonight so it will be a late night. Hopefully, I will be able to fit in a short nap this afternoon.

A friend on Facebook posted photos of a young whale off the coast yesterday. I will be keeping my eyes peeled while on my walk this morning. This is the time of year they are migrating north. To see a whale would be a real treat.

Tuesday, March 17, 2015

No Sleep Saga Continues

Happy St. Patrick's Day! Wearing of the green today to the rehab class and Safeway. Checking off my list in preparations for our company's arrival next week, the windows were cleaned yesterday before I watered the potted plants in the yards. Today, it is the inside of the refrigerator. It will be sparkling before the day is done. I do need to also go by the butcher's and Trader Joe's after the rehab class this afternoon.

Sleep. It has really become a problem. Last night was the worst. I was wide awake at 11:30PM and didn't fall asleep until almost 3AM. No new medications. I just don't understand it. It will be a struggle to make it through the day.

Mom and I spent the day together yesterday after I worked out at the other rehab. The pulled muscle in my left hip turned into a mild problem with my left knee while doing 3.4MPH on the treadmill. It feels fine this morning but I will be aware of it during the rehab class today. One of my fears is that I will have an injury that will end my exercise routines. That would not help the old, damaged lungs.

Into Tuesday we go!

Monday, March 16, 2015

St. Patrick's Day Party #2


A little Irish Fiddle music for St. Patrick's Day? It was a warm late afternoon yesterday when we stopped by the Yacht Club at the harbor to watch our neighbor Leslie and her group play and sing good Irish music. Over two years ago while Leslie and her family were visiting her husband's relatives in Ireland, she took a week of an Irish Fiddling camp. She learned a lot and returned a year later for more. In the meantime, she talked two violinist in our little orchestra into learning with her, added a singer/guitarist for the rhythm and they have been performing and practicing ever since. They were fun to watch, the words to the songs were hilarious and the audience enjoyed the experience.

We had never been to the Yacht Club before. It was not fancy. The drink were cheap. There were kids and dogs and people wandering about. Very casual. Free popcorn. The club was totally run by volunteers and costs about $50/month to be a member. The views were amazing and the kids were all playing in the water just behind the fiddlers.

Before the party, I cooked shrimp deviled eggs for Michael's breakfasts and a lunch for me. After ironing and picking up the house, I sat in my chair and slept for two hours. I just can't party three nights in a row anymore!

Mom and I have nothing on the schedule so we will entertain ourselves today. I want to get out of here early so I can workout at the other rehab before our day together. It is going to be in the high 70s today so it may be time to breakout the shorts. In March. Crazy weather.

This afternoon, I am going to wash the insides of the windows. As it is physically tough, I will be using my long hose from the oxygen tank in the garage to give me support. It's only ten days before the company arrives.

Sunday, March 15, 2015

Photo Update

I finally downloaded photos from my phone. We may call this Photo Update Sunday. They are below in order beginning in November. I am sorry for the first one as it is a bit gross. 


Michael's staple in his head from the fall when he had a convolution due to low blood sugar and a concussion. The blog is  HERE


William spent the holidays with us. Here he is with my mom at her apartment. She is always amazed how tiny she looks next to him. For the Christmas blog, go to HERE


This is Michael with the flu after the holidays. The nasty flu. He was still coughing six weeks afterwards. The blog is HERE


Mom enjoying her first beef tri tip on garlic bread. She ate the whole thing! This from a woman who did not eat beef for ten years before moving closer to me. 


One of my front window boxes. It faces north and I had a heck of a time getting anything to grow so several years ago, I went with silk. 


One morning I was out on my walk along the beach and Anna messaged me. I told her I was on a walk then snapped this gorgeous photo to send to her in the southern California desert. She sent back a bad word. I laughed out loud. In the distance off the tip of land is the famous Maverick's big wave. 













Last evening's Bourbon Cream (it was supposed to be Irish Cream) Cheesecake with Bourbon Cream Truffles that I made for Wayne and Jill's St. Patrick's Day party. We had a blast, arrived around 5PM and left around 10:30! I was able to chat with people in person who I usually just see on Facebook, a few old friends and met a couple new ones. There were about 100 people there all enjoying corned beef, red potatoes and cabbage. Some fabulous person even made dim sum. It was a warm evening and only got a bit cool at the end of the evening.

Saturday, March 14, 2015

St. Patrick's Day Party Weekend - Day 1

Don loved the British comfort food dinner last evening. He worked on my computer for a few hours before we ate, backing it up and installing a few things. After dinner, we worked on the big TV in the living room. He set up Apple TV, a NetFlix account and demonstrated how it all worked. We are now current!

This morning, I need to get the Irish Cream Cheesecake with Chocolate Truffles in the oven to bring with us to the party this evening. Around 100 people are expected under a huge tent at Wayne and Jill's to celebrate St. Patrick's Day. But, before that celebration, I need to hit the yards hard. Next weekend, I just want to cut and blow and water. Nothing big as I will have a long list of other things to do anticipating Anna and Doug's arrival on the 26th.

My goal today? Not to break a fingernail while working in the yards!

I slept well last night, finally. Maybe from sheer exhaustion. I feel really great this morning.

We are watching the first Formula 1 Qualifying of the year. The race from Australia is tomorrow and it is fun to hear all the gossip, see all the new teams and even some new drivers to the series this year. Last year was such an interesting year that I hope that trend continues.

Friday, March 13, 2015

Sleep Issues

I cooked for three hours yesterday afternoon. Dinner for British Don for tonight? Done. Beans and turkey kielbasa. Comfort food. Also, an appetizer is ready but a heart-friendly cake will be made this morning. Last night's dinner was also prepared and delicious - steak, onions and mushrooms in a green pepper with low fat Swiss cheese melted on top.

Mom had a new machine sent from her doctors to check her pacemaker from home and didn't have it plugged in correctly. I stopped by to correct it and we were able to send in the information. She had been wanting to buy some seat covers for her Mini Cooper, I had done a search and found some at O'Reilly's Auto Parts just down the street. We went, we saw, she bought. They were only $27.00 out the door.

Sherman was full of the Old Nick at the rehab class yesterday and made me laugh the entire time. Such a good friend.

Sleep is still eluding me. With very little the night before, I thought I would enjoy a full nine hours last night. I was awake at 2AM again, stayed in bed until 3:15 then went into the den. I drifted off around 4:30 and awake for our 5:30 coffee. Not a lot of sleep again. I don't understand what is going on. I am going to be exhausted today and this evening with company. Mom and I are meeting this morning to run some errands and an early lunch before I meet Don at the house.

I need to get through the day. It will be a challenge.

Thursday, March 12, 2015

Party Weekend

I had not worked out at the other rehab in quite a while. Yesterday, it felt great to take the time and walk the treadmill as long as I could. My body is finally feeling loose again. After my rehab class today, I need to begin to cook for British Don's dinner at our house tomorrow night: beans, turkey kielbasa and a heart-friendly cake. British comfort food. Friday will be a baking day. We are invited to a St. Patrick's Day party at Jill and Wayne's house on Saturday evening. I am making an Irish Cream Cheesecake with Chocolate Truffles to share.

At the orchestra rehearsal last night, we have been invited by our neighbor Leslie to see them play their Irish fiddle music at the local yacht club on Sunday. Both venues will be outdoors, which is the only reason we will be mingling with groups of people. The flu is still here. The oboe player last night was telling me that he had been ill for two weeks. Ah, thanks for sharing that, step away from me, please.

The march towards company coming in less than two weeks continues. I cleaned the rails of the closet in the guest room, the mirrored closet doors and the sliding glass window rails. The closet was already pretty clean and organized so it only needed some dusting. This Saturday, I am going to do major yardwork so next week will be just a clean up a few days before their arrival.  Getting excited.

I couldn't sleep after the rehearsal last night, tossed and turned until after 11:00PM. With just over six hours of sleep under my belt, it is going to be a long day. No time for a nap!

Wednesday, March 11, 2015

Sleepless on the Coast

It's wet outside! A big deal. That it rained just a small fraction of an inch is no matter. It rained. Everything is a bit wet. That, actually, changes my plans for the day. Over the hill I will go to work out at the other rehab, do a butcher and Trader Joe's run before coming home to pickup the house for the housekeepers tomorrow and preparing for an orchestra rehearsal tonight.

Sleep has been a problem recently. I seem to awaken around 2:30 then drift off around 4:30. Michael will brew the coffee  around 5:30 and the cartoon-like aroma works its way down the hallway until it tickles my nose and draws me out of bed. Happened again this morning. Beginning 3AM on TMC, I caught a 1950 Alfred Hitchcock movie featuring Marlene Dietricht and Jane Wyman, "Stage Fright." I was riveted until the bitter end at 5AM.

Usually, I have a problem with sleeping if I don't workout. At the rehab class yesterday, I finally was able to complete my entire routine for the first time since I got sick in January. I was glowing with sweat! It felt great. I thought I would sleep well...but, alas.

If you have IPF and taking the new drug nintedanib, you can be paid to be interview about your experiences with the treatment and they are looking for opinions. Here is the information:

email header
 

Patients are still needed for a paid phone interview.  Some restrictions have been lifted so you may now qualify if you did not in the earlier request.  If you are a patient currently taking OFEV (nintedanib) for Idiopathic Pulmonary Fibrosis (IPF), you are invited to participate in a confidential interview with Medquery Inc., regarding your experience with this treatment as well as getting your opinion on a potential new treatment option.  The interview is a 60-minute telephone call in which you would be required to be in front of your computer and on the Internet.
To see if you qualify for this paid interview, click here: http://survey.quickquest.net/TakeSurvey.asp?PageNumber=1&SurveyID=4M05p8KH9p30Il  
***If you experience any technical difficulties, please call MedQuery at 312-268-2411. Please do not contact the Coalition for Pulmonary Fibrosis, as we will not be able to assist you on technical issues.***
Please see details below:
Participants will receive $125 for their service.
Note – patients from Illinois or Tennessee will NOT be included in this round of calls.
Please also note that respondents must be seeing a physician at an academic hospital or research center (centers listed in the previous email message that included IPFNet centers are no longer restricted).
 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 

Tuesday, March 10, 2015

Jarring Beginning to the Day

We awakened an hour and a half later than usual. Thank you, time change. Michael had thirty-minutes to dress, eat and hustle out the door into 1/4 mile visibility due to fog. Rough way to begin the day. The countdown to Anna and Doug's visit begins in earnest today. Two weeks away. Lots to clean, except it is just a bit too early to clean the oven or refrigerator. I want them spotless when they arrive!

I will be at the rehab class today without either of my rehab boys. Dick is still recovering from his UTI, which had traveled into his prostate. There will be some tests next week to see if his kidneys were also damaged. That is scary. Sherman has his quarterly union retiree luncheon, where he is always the oldest guy in the room. His eyes lit up when he mentioned that they were serving corned beef and cabbage...and cake. It is good for him to hang out with his buddies.

Michael laughed when I mentioned the maintenance that was going to be require before our company arrives. Personal maintenance: eyebrows waxed, face hair removed, toe nails cut and painted. My basket of makeup has grown larger the older I become. Day creams, night creams, eyebrow pencils..it is tough getting older! But, considering the other option, I'll take it!

Winnie phoned to thank me for the very late birthday gift certificate to the local independent book store. We chatted. She was hilarious. I mentioned that we MUST get together, as it has been far too long since I have seen her. Winnie: Mom, you need to schedule a day to see Lynn. Here is the phone.

This allowed Natalie and I to have a nice chat, we did arrange a play date for all of us and I so look forward to seeing her entire family. They will learn this week if their son Oliver will be joining Winnie at the private school where Natalie teaches. Both he and Winnie will be attending it for free, if he is accepted. Pretty sweet.

Monday, March 9, 2015

Re-reading from the Beginning

I spent a bit of time on Sunday morning re-reading the first two years of this blog. Small details had been forgotten. Memories returned of working very hard to use the perfect words and to try to keep them short. I also realized how valuable my experiences could be for someone newly diagnosed. Why did I suddenly re-read them? One of my mom's doctors took an interest and recently emailed her that she was reading the blog from the beginning. A doctor who has a family and limited time. I am so touched. My hope is that she passes the blog information to the pulmonary group and maybe they, too, will pass it to their patients.

My goal is still to speak to groups of people. I especially like to speak to groups of doctors as it is there that I think I can bring a change in their perception of the possibilities of diet and exercise for ILD patients. They are the gatekeepers of that information and also the cheerleaders. By prescribing and encouraging pulmonary rehab, they are offering a better quality of life and lots of social and emotional support. Win/win.

After we met with the head of the patient advisory board on Friday, I got a call from Michael later that afternoon. Apparently, talking with her about our experiences dealing with my diagnosis, especially the first four years, brought up a lot of emotions. He went back to work and had to take some time to gather himself. On Saturday, we talked again about how helpless we felt and, with the two lawsuits, we could not even think about planning for our future. Our lives were on hold for those four years until the Worker's Comp suit was settled. We were unable to do any work on the house because it would appear that we were covering up a mold problem. It seriously needed interior paint. After it was settled, we arranged for painters to paint the entire house while we took a long road trip. Everything bit of furniture was piled into the family room, kitchen and garage. It was tough to arrive back home, rested and happy, only to have to spend almost a week to put back every stick of furniture and all the clothing back into its place. But, it was then that we began to plan and live.

As you know, I am a huge supporter of medical research. Yesterday, I did the initial intake for a brain research program. It will be only from home and involved brain games over time. They want your input for years. If you are interested it helping or want more information, here is their URL: http://www.brainhealthregistry.org/

Sunday, March 8, 2015

How to Hear a Bad Diagnosis...or Not

We met with the head of the patient advisory board for a conversation last week. Michael and I have been asked to sit on a special panel in May. We will represent the "married couple" along with two other patients in front of a large auditorium filled with doctors. She asked if we would had a problem with that. HA! Get out of my spotlight! I love a good audience! But Michael? He is very...apprehensive about it. He is such an honest and open person that he worries he might say something inappropriate. I know he will magnificent and charm the audience.

They want a summary of my "story," how it has affected our child, and what experiences we had with the university system, both bad and good. For example, how to give bad news to the patient. That was so hard. I was alone. Michael had not come along as we were told that I had a curable lung disease. The problem was the disease had done too much damage and I was extremely ill. I was not going to be "cured."

Who gave me the information that I have limited time of 2-5 years on this earth? Who explained how I will die? Who couldn't look me in the eyes while giving me this information? A resident. A resident who had no experience giving bad news. It was horrible. I cried all the way home, told Michael that I still was not sure what I had or why or how it was doing damage to my lungs, but I knew that I was going to die early because the resident could not look me in the eyes while giving me the bad news. This was a fatal disease. It was bad.

When one has been referred to a huge hospital or university system, it is because the local doctors cannot handle or diagnose or treat a difficult illness. The chances are that they see and handle more fatal diagnosis's then a local hospital are good. Really good. The head of the advisory board told us of one of these larger hospitals where they actually ask how you want to be told bad news, even before the first meeting with the doctors. That is rather brilliant. I would have wanted Michael with me. I would have wanted a whole lot of facts. I would have had a lot of questions. I was totally bewildered and stunned.

Dr. K. finally arrived in my life several months later and she gently and kindly answered all of my questions. She refused to put a time limit on my life. I asked if I should begin to arrange my funeral or if I was going to live to seventy-years old? She replied, "We'll limp you along to 70 or longer." It gave me some hope. But, the nagging time limit the resident gave me kept playing in my brain.

As you may have noticed, I do not write about the meetings of the advisory board and will probably not comment anymore on the substance of the panel in May. It should be fun, though.

Saturday, March 7, 2015

Quiet Weekend

We met Ian and his girlfriend Lynne at British Don's last evening. We asked to meet him after hearing about how he visited Don everyday while he was in the hospital and even when he moved to the rehab center. Before driving him home, he made heart-healthy soups and filled his refrigerator with food. What a guy. Ian had a bypass in 2009 and had helped Don through the process with lots of information and support. He had been there. Done that. He was just as kind and interesting and charming as expected. Lynne was fun and lovely and also so very kind. We enjoy the evening with them, the food we brought was a success and everyone left happy.

It is foggy and cool this morning - good gardening weather! My fingers are itching to get a'weedin' after a quick run to the bank. It is going to be a quiet day. A quiet weekend.

There are 19 days left before Anna and Doug arrive. This weekend, I am going to vacuum underneath the guest room furniture and make sure all is clean and ready for them. So much to do, so little time.

Happy Saturday!

Friday, March 6, 2015

A Full Day of a Variety of Venues

Often, when I am changed my clothes for the fourth time during the day, I think of a mom at William's elementary school. She once made a statement that whatever she put on in the morning was what she wore throughout the day. No changing for a nice dinner out. No gardening or walking clothing to be later changed. As a result of this philosophy, she often just wore jeans and a t-shirt.

As I try to figure out what I am going to wear today, it is going to have to fit a variety of venues. At 9AM, Michael and I are meeting with the head of the Patient Advisory Board of my university hospital for a chat on the Avenue over the pass. We missed the last meeting due to my illness but they still what our opinion. Michael can only stay an hour, I will stay a bit longer before meeting mom for lunch. Venue #2.

On the way home, I need to run a few errands before cooking dinner for British Don, his friend Ian and  Ian's wife. Venue #3. After the kitchen cleanup, we will pack and haul the dinner into the city. Venue #4.

Normal wear for that kind of day - in order: professional, casual, super casual, nice but not fancy. If I try to make it with one outfit for one day: nice but not fancy. Now I have to go in there and decide what to wear! Thinking a casual dress would cover all venues!

The rehab workout was a bit easier yesterday but I am still not up to my standard workout. It's the recumbent bike that is holding me back! It is going to take time to get back up to speed.

The gardens look fantastic after my work on Wednesday but the strip of earth in the very front needs weeding. That is the plan for Saturday morning. It may take a couple of hours but it will be done. We got a $200.00 water bill yesterday. We only water the gardens 10 minutes twice a week. It is barely enough to keep the plants alive. Plants that are expensive to replace. We had also changed our showers, dishwasher and laundry routines to help save water. It was the highest bill we have ever paid. The difference from last year? We have the sprinklers on more often since there has been so very little rain.

Thursday, March 5, 2015

No Longer Current

A few years before my aunt died at 84-year old, she used to say that she didn't understand the world anymore. She would asked what in the heck was a .com? She believed in books and read right up to the day she died. Never touched a computer. When something would happen that she just could not understand, she would say that she was ready to leave this earth. It had become too complicated.

Without realizing it, I was current on all things when I was surrounded by the students at the school where I got sick. It was in the air. New technology, new books, new fashion, new music, new TV shows. I knew what the kids were into and thought it was all normal. It wasn't until a few years after I left that I realized that I was no longer current.

Proof of that was when William would visit. He nudged us to be up to date with technology, bought Michael an iPad which changed his online life, he introduced us to Hulu, bought us a Wii years ago and he was pushing an Apple TV box to stream Netflix plus an Amazon Prime account last Christmas. Also last Christmas, my niece asked for a specific brand of boots. By the time I tried to find them, they were sold out of the popular styles. The Nordstrom clerk mentioned that they couldn't keep them in stock because they were so popular. I had never hear of them.

Listening to the radio while working in the gardens yesterday, it was mentioned how we out of the important demographics for advertisers. It is lately that I do recognize that fact. The reason why we are not as important as the younger people is that they are still making decisions on what they want to buy. We older people have made up our minds. Interesting.

I do have to admit that sometimes when the world seems upside down, I feel that I really don't understand what is going on. I am out of touch. I am not current anymore. I have got to start hanging with younger people!

Wednesday, March 4, 2015

Rehab, Gardens, Prednisone, Cooking

Since fighting back from the horrible flu, I have noticed that some of my stamina has returned. The recumbent bike at rehab was so much easier yesterday, though I am still not up to my standard workout levels. Hopefully, I will be able to do the entire workout beginning next week. In the meantime, I will push myself to improve everyday.

Working in the gardens is very physically challenging but very mentally calming. My Zen place. I plan to spend a few hours in the garden today and maybe even weed a large patch in the very front. After a shower and dinner, my hands will be sore from the weeding for an orchestra rehearsal this evening.

Beginning tomorrow, I will finally be returning to my 15mgs of prednisone. It has been a long, slow downgrade from 40mgs to combat the flu. I may even try to get down to 12.5mgs. The last time I tried it, I coughed all the time. I guess my lungs needed the support of 15 mgs.

Hurrying home after buying groceries each week is when the fun begins. After unpacking, I begin to cook breakfasts, lunches and dinners for the next few days. All the healthful foods are made and ready for me to enjoy. A real treat. Yesterday, we awakened to Boursin-stuffed Deviled Eggs for breakfast then I enjoyed a Caramelized Onions, Arugula and Goat Cheese Pizza on a La Tortilla Low Carb tortilla for lunch. Leftovers today!

This Friday, British Don's friend Ian and his wife are going to join us for dinner. I am making a heart-friendly Spanish Chicken with Olives dish with fresh asparagus and an appetizer of fat-free Sun-Dried Tomato Dip. We so want to met his friend. He visited Don everyday, made homemade soups for his freezer and filled his refrigerator with heart-healthy foods when he returned home. What a friend.

Tuesday, March 3, 2015

Exercise Through Pain

One of my biggest fears is an injury that stops me from exercising or rehab class. I try to make sure I warm up before anything strenuous and stretch the muscles after a good workout or walk. So far, so good. 

Until yesterday.

Somehow, I got a sliver in the bottom of my foot, though it feels like a huge block of wood! I tried to get it out yesterday morning but it was not going to budge. It didn't bother me much until later in the afternoon and, after lots of walking and shopping with mom, I began to limp. 

Michael arrived home to do surgery to remove it, with the help of a razor blade, last night after dinner. He thought he got it but there "is just a little brown spot left." Well, this morning, it is back. It hurts. Today is rehab class with a treadmill involved. I may have to work through the pain. 

But, I am going to try to get it out again this morning but it is really stuck. 

Side issue: I wanted to get my toe nails done but can't if there are any open wounds because of a possible infections. So, I will have to wait for this to totally heal. Thank goodness it is not summer and that I am wearing closed-toed shoes!

Monday, March 2, 2015

It's the Girl Scout's Fault

She looked adorable in her uniform but, oh my. The doorbell rang on Saturday afternoon and there stood a girl scout from around the corner. Michael was thrilled! Cookies! Yippee! A few of her friends were helping her pull a wagon filled with a variety of cookies, but her dad was in charge of the money. Smart. We had not met them before and, after buying three boxes, we had a great conversation together. The new neighbor across the street also came over for a chat and two boxes.

Now there are cookies in the house. After dinner, we sampled each variety. Though I tried to avoid looking at the nutritional information, I knew it was not going to be good. Closing them, they are awaiting their departure from our home this morning. Michael is going to "share" them with the office. Good bye!

After eating the cookies, I am feeling fat! Weekends usually end with the feeling of fitness and strength and all my chores done and I am ready for the week! Not today. We stayed too late at British Don's on Friday night so Saturday, I was whipped. And it was too wet to work in the garden.

Gardening. It is the number one way I lost a lot of weight and how I stay loose. Different muscles are used than the ones I use in the gym. Four to five hours of raking, bending, lifting, up ladders, down ladders, stretching, weeding do magic to my body. Afterwards, I am always dirty and sweaty and tired but feeling so satisfied as I look out onto the manicured gardens.

Instead of yard work, I cleaned my closet, rearranged my clothing (by type and color), did a lot of laundry, ironed, balanced the checkbook, paid the bills and tried to take a nap. That was when the phone kept dinging. No nap. Then Michael arrived home. Forget a nap. By early evening, I was ready for bed.

Sunday, the yards were still too wet to do much but I planted seven azaleas in the front and sowed some wildflower and marigold seeds before a quick shower and we were out the door by 10:30. Michael needed to met with his auto glass guy over the pass. It was cool but beautiful, very little coastal traffic and it was nice to spend the day together.

But, I didn't have a good workout in the yards. I can really feel those girl scout cookies. Maybe what I am feeling the guilt of eating the girl scout cookies! Can I blame it on the girl scouts?

Sunday, March 1, 2015

Comparing Rehab Programs

During our dinner with British Don last Friday evening, we talked about his first week in his cardiac rehab class. It was at the hospital where he had his surgery, which also oversees a pulmonary rehab program. His rehab is three days a week and, according to him, features screaming and berating exercise physiologists. He used another term....

You must understand, Don is a proper British gentlemen who never raises his voice and is very aware of all the manners of living in a polite society. When the woman was screaming in his ear and he quietly mentioned that his hearing was fine and she needn't scream, she told him that she would scream as much as she wanted to scream. It went downhill from there. If that happened in my program, I would not put up with it and would have walked out on day one. Tipping my hat to him, he has made a commitment to continue, though he said he will be wearing a set of earplugs.

I also thought it odd that the class was available as long as there was improvement. Once the patient is stable, they end the program. If those were the rules at my rehab, I would have been gone nine years ago. It has kept me alive. The RN there has discovered problems and sent me to my doctor before something worse developed. It has provided a tremendous amount of social and emotional support.

Why it is so odd for me to hear about all this is that the head of Don's program speaks at conferences and is revered by my university hospital. Their pulmonary program is a shadow of the program I went through initially and continue to enjoy.

For Don, I hope he continues as it will teach him the parameters of what he is able to safely do in a gym on his own (he has also joined the new gym at my university hospital just blocks away from his home), meet other people dealing with the same issues, have somewhere he has to be and help him continue to lose a bit more weight. He has returned to eating regular foods yet has maintained his thirty-pound weight loss. He looks twenty years younger and even has healthy pink cheeks!