Living Well with a Bad Diagnosis - Lung Disease

Thursday, January 31, 2013

Yoga Sore

I am sore this morning from the 90-minute yoga class from hell. I am finding that it is a challenge I can't walk away from. It is tough. I even began working on doing a head stand! Yes, me! I got my legs and hips high is the air for several minutes. A major feat! It actually felt pretty good. I am also doing a type of push ups to help build strength in my abs. I can see the shape of my body changing.

During the yoga classes, I noticed that when we were on our knees doing leg work, I would become very short of breath and begin to sweat. Clearly, I should be using oxygen during that part of the workout. For the first time yesterday, I brought it along. When we came to the part when we are on our knees and swinging the leg into the chest then straight back with a high kick, I turned on the oxygen. It helped and I kept it on for about half of the class. When we did sitting and lying down work, I was able to remove it all together. I think I got a better workout and able to push myself harder with the supplemental oxygen support.

Emotionally, I gave up noticing people looking at me weird when I am wearing it but in a setting of all very "healthy" people, they all seemed to move away from me. It felt like whatever I had must be contagious! The teacher was great, as she knows a bit of my story. The rest of the class, not so much.

There is a long to-do list of errands and bill paying already in the car for this morning plus a visit with mom before the rehab class. There is springtime weather expected today so I will sit in the garden after class. Natalie invited me to a gala fundraiser next month for her private children's chorus. It is a fancy affair so I want to climb back into my black Calvin Klein dress I bought for Shelley's wedding and wore for the French dinner in the city last weekend. It looks best with high strappy sandals instead of with hose, so I need to get some sun on my legs.

Orchestra rehearsal went well last night and the dress rehearsal is tomorrow night. My brain was firing on all levels throughout the evening. Lots of work.

So, into the day I go. A bit sore but feeling very strong, standing very straight and feeling very good.

Wednesday, January 30, 2013

More Recipes for People on Prednisone Therapy

Into the yoga studio I go again this morning. It is the beginning of a very busy seven days. I am always amazed how life comes in clusters of busyness then nothingness. Into the busyness phase I jump! It includes orchestra rehearsals, a concert, mom's surgery, Superbowl party, doctor appointment, bill paying, food buying madness.

To prepare for it all, I am making sure the refrigerator is stocked with healthful foods. Breakfast or lunch will be Julia Child's Eggplant Pizza. Lots of vegetables will be served with each meal.

Mom is coming for dinner before the concert on Saturday night and I have promised her a dinner of the Coconut Shrimp I made two weeks ago with a side of rice and cole slaw. It was simple and delicious. Here is the  recipe:

The rest of the week will include the following main courses. Remember, people who are on long-term prednisone therapy have a hard time processing carbs, which includes fruit, yogurt, milk, grains. If you must have some carbs once or twice a week, pair it with protein to slow down its absorption. I have been eating 1,200 calories this month and have lost the holiday pounds. I will continue on that for a bit as I am enjoying the loose clothing! Normally, I eat 1,400 calories a day to maintain my weight.

Here are the recipes for the rest of the week:
Stuffed Burgers with a side salad: Using only one-pound of a lower fat beef instead of 1.5 pounds will cut the calorie count.

Fish Gratin with side noodles for Michael and cabbage for me:  This recipe takes some tweaking: non-fat milk instead of cream, no butter and I will use Pam spray.

Chicken Pizza -  Also needs a bit of an adjustment: no pepperoni and chicken Italian sausage instead of pork.

Julia Child's Eggplant Pizzas -  Again, I use reduced fat cheese.

Tuesday, January 29, 2013

Another Blog Ahead?

I have been thinking about beginning another blog specifically for those of us who are long-term prednisone patients. I have learned a lot about what to eat for each meal, proper portions, interesting recipes and how to order in any restaurant. I also noticed that I have a huge number of hits to the posts of this blog when related to menus and recipes.

It has been two years since I worked with the nutritionist at the Weight Management Clinic and I have been able to control my weight during maintenance. A few weeks ago, I noticed that I had gained a few pounds over the holidays and it scared me. It could be the start of leading me down the path to regaining the 60 pounds that I had shed. My skinny size 10 Levi's were too tight to wear comfortably. They are the tightest things I own so they are my guide to how I am doing.

So, I began intensive yoga along with my regular rehab, watched every bite of food for the entire month and have lost all the weight. When I went to the doctor's with mom yesterday, I was wearing the jeans. The size 10 skinny jeans. They fit perfectly.

Mom met with her foot doctor for the pre-op to amputate her second toe due to bad bunion surgery years ago. When I arrived to drive her to the appointment, she was limping and in pain. She thought she may have cracked her hip while doing her exercise routine on a stationary bike. She is tough, no wimp and can take a lot of pain so I knew there really was a problem. We went to the appointment then to an immediate care center to have it checked out. We waited only a few minutes before the doctor manipulated her body into odd positions and declared that she just had a badly pulled muscle. YAHOO! After a Walgreen's stop for pain medication, she is planning to take it a bit easy for a few days. If the pain doesn't subside, we will make an appointment to see her primary doctor.

It is going to be a crazy busy week ahead. The orchestra concert is Saturday night but will also meet for our regular rehearsal on Wednesday evening along with a Friday night Dress Rehearsal. That will be a lot of late nights for me. Michael also wants us to join friends for a Super Bowl party but I would have no recovery time from the concert. I think I may beg off. He can go. I really don't want to be around a lot of people and eat food made by other people with this nasty flu and cold rearing its ugly head.

Rehab class today with my favorite guys, Sherman and Dick. 

Monday, January 28, 2013

A Big Night Out - Translated from French

I just stumbled out of bed still feeling, what we call, stupid. Not quite awake. Still needing sleep. We had a really fun night and didn't climb into bed until around midnight.

It all began when we were invited to a surprise birthday party for Marco's mom who is visiting from France. Marco is the owner of our favorite restaurant where we often go to dinner with our British friend Don, which is how we met Marco and his wife Elle. Well, Don had to make a quick, unexpected trip to Hong Kong and missed the event. We decided to go anyway.

It was like being dropped into a whole other different experience surrounded by six professional chefs and an optometrist sitting next to me all rapidly speaking French. We were also in a French restaurant we had never even heard of but was exceptional. Marco's mom was totally surprised, she was just enchanting and said throughout the evening, "Oh la la!" I fell in love.

Across from me was this cool looking, hip, skinny co-owner with Marco of all four of their restaurants and next to him was the chef of one of their restaurants where we have never been able to enjoy a meal. The constant line around the block is just not worth it to us. Next to Michael was the chef from their Mexican restaurant where we enjoyed duck confit tacos and plan to bring William and Kimberly there in March. He remembered us. I didn't remember the man down at the end of the table but he also was a chef. Next to me was a handsome Frenchman who sat next to his wife and little girl. I met the woman when they came in and we became best friends within minutes.

The chef from the very popular restaurant invited us to come anytime and he would get us a table. He told us he was there Monday through Friday for lunch or dinner. We must go! I was kissed three times on my cheeks when we departed. I think we have a fan. We certainly had fun with him.

The food? Michael and I split an appetizer of sauteed calamari (Spicy Monterey calamari "a la plancha," jalapenos, chorizo, piment d'espelette and olives) and lamb chops with a Gruyere potato gratin and green beans. We also tasted some shrimp in a divine sauce in which I was able to taste a finish of Pernod and their Mac 'N Cheese should be illegal. (Macaroni & cheese, kabocha squash, artichokes, chanterelle mushrooms, Gruyere cheese & cheddar cheese.)

It was one of those nights where you know you have had an experience. We were surrounded by creative, talented and passionate people. We had a ball.

Sunday, January 27, 2013

Uncomfortably Inspirational

It happened again at the new yoga class yesterday. I am always taken aback. I think, "What's the other option?"

I arrived early to meet Melissa, a yoga teacher who I had been told was excellent. I mentioned I was at a new studio due to the lit fireplace on Saturdays at the other studio. I mentioned that it was impossible to practice yoga in the smoke and heat due to my lack of lungs.

All the yoga teachers in town work at both studios.

She looked at me. There was a pause then, "I heard about you from Courtney." Courtney had been my teacher at the other studio for all three of the classes I had attended. I smiled and said, "Oh! I hope she didn't tell you I was crazy," trying to make a joke. "No," she said, "she told me you were inspirational."

That always makes me a bit uncomfortable. I don't think I am inspirational, I think I made a decision to take control of what I COULD control with my illness to try to live a longer life. I took control of my food and exercise. I ate well, immediately giving up soft drinks, sugar, glutens, nightshade vegetables and tried to eat as cleanly as possible. I worked out in rehab five days a week for years. Those are the things I could do for myself. What I didn't know, and the doctors didn't know, was with this combination extended my life. I pushed the need for lung transplants many years into the future. The doctors tell me that they have never had a patient work out so hard for so many years with such great results. They are recommending my diet and exercise program to other newly diagnosed patients as they can only do so much with drug therapy.

I was a person who worked too hard, did not eat well, enjoyed fast food, bread was my friend, loved Diet Coke and had never been to a gym. If I can change immediately upon a bad diagnosis, anyone can.

But inspirational? I was just trying to save my life. What was the other option? Crawl into bed and wait to die? Sorry, just not in my DNA.

So, the class? It was a beginning yoga class and only for an hour instead of the other classes I have taken, which were ninety-minutes. It was a workout but much more in line with what I had expected compared to the wild ride the last two Wednesdays. Those classes included head and neck stands, for heaven's sake! I have a feeling I will become a regular on Saturdays, in a nice clean studio, with a good teacher, trying to extend my life a bit longer and maybe a bit inspirational!

Saturday, January 26, 2013

Very Appropriate!

I have been telling the cute story of Natalie's 2-year old son, Oliver the past couple of days. When we met for coffee and a chat on Thursday morning while her car was in the shop, he was so excited to show me his new Spiderman t-shirt. After about an hour of food and conversation and wandering the little mall, he became a bit bored. Natalie asked if he wanted to see a Spiderman movie on NetFlix on her phone. She found one, turned it on and realized that it the was very dark and scary Spiderman movie and said, "Let's find the other Spiderman movie. This one is not appropriate."

Oliver crossed his arms, looked up with her, made a face and said, "But dad says it is appropriate!" We both broke into laughter. She found the other movie and I asked him, "Is this movie appropriate?" He looked at me and said, "Mom says it is appropriate."

How many 2-year olds even know the word appropriate? And use it in a sentence?

During coffee, Natalie asked if I could ask if William would come to her school and speak to the Middle School kids. She can't get them up to speed musically - just not enough time before they graduate - and they are super interested in the technical aspects of music. William phoned last night and I asked if that was something he would do when they were here in March and he said he would be happy to speak with them. For many years after he left college, they still asked him back to speak to the incoming Freshmen.

He also shared with us the name of the group he will be working with from April through the summer. I was just reading the articles online regarding their reunion and it is a big deal. They will be playing large venues and festivals. Sounds like a lot of fun.

Also last night, I mentioned to him that Chip and Michael were planning on seeing The Who but just couldn't get good seats. He told me that he has major friends working on that tour and said he could get the tickets. Quick decision was made and we thanked him but no. Chip is still fighting the end of the flu and I just don't want to be exposed to it. Better not to tempt fate!

This morning, due to the gentle rain, I am not working in the yards but have decided to check out a new yoga studio. The class is specifically for beginners and is only an hour long. I am still trying to find that one class that fits.

Friday, January 25, 2013

Party and Illness and Menus, Oh my!

It is coming. People around us are reporting high fevers and body aches. Stomach upsets. Colds with a cough. We are being surrounded. It is terrifying. Our job is to be vigilant, to wash our hands and be aware of people who might not be well.

With this in the forefront in our awareness, we have to be with a group of people on Sunday. We were invited to a surprise birthday party for a friend's mother in the city. She is visiting from her home in Provence. We are delighted to be invited into this group of people. Our friend Don introduced us to the owner of our favorite restaurant years ago, he recently married and has a young daughter. I really like his wife, Elle. I have met his mother once and she only speaks French. Oh my.

We were going to the party in a very nice French restaurant in the city with Don but, alas, he is now on his way to Hong Kong today on a last minute business trip. We are still going to the party, as we had to cancel a previous dinner with them because of my health and I just don't want to cancel again. And we are looking forward to being with them. The saving grace is that Elle also doesn't speak French. We will huddle together!

My body still notices that I was in yoga hell on Wednesday. A different set of muscles hurt this week. This morning, I am going to the other rehab for my routine then will spend the rest of the day with mom. There is a gentle rain today and is it very mild outside.

Menus for the week are interesting. I haven't tired two of them yet and always excited to find new recipes.

Greek Shrimp Recipe (with rice for Michael) -

Mongolian Beef -

Chili Chicken Monterey -

Enjoy Friday!

Thursday, January 24, 2013

Wandering into Today

I have such terrible wanderlust right now. Just watching a car commercial, I feel the urge to haul out the luggage and pack. We want to go back to the Bourbon Trail in Kentucky, see my aunt in Tennessee, visit my friend in Raleigh, and finally meet dear friends in person in Ohio.

It would be crazy to take off right now. The weather throughout the country is cold and snowy and not good for sightseeing! I must take a deep breath and just dream of the open road, the food and the time together. Maybe I need to talk Michael into a day off next week to just explore small roads, find a little lunch place and be together.

At the rehab class on Tuesday, we were talking about all the people who we never see anymore. We hoped that they were all well and just doing other things but the reality is that the majority of them have died. Families never think to share the death notice with the rehab staff because they normally become too ill to continue rehab then die maybe a month to a year later.

We were asking the RNs about some specific people we no longer see in class. It was then that we learned that one of my favorite people died last week. His name was Fred and he was 92 years old. He looked fantastic without a wrinkle on his face and always a chuckle in his voice during conversations. He was still mentally sharp. He still lived alone although he and his son had meals together. His son. Probably near 70-year old!

It will be very difficult to lose Sherman and Dick but the reality is that I will probably out-live them both. So not wanting to think about that, we teased Sherman during the entire class and told him that Dick and I were beginning to plan his 90th birthday party only 23-1/2 months away!  We have to get him through two Christmas’ and two flu seasons! In the past, Sherman told me about this horrible old bar near Colma – a city of cemeteries – where people usually meet for drinks after a funeral. We told him that was where we would throw the big party. Sherman replied that it was close enough to the cemetery, as he would rather die than have us throw him a party. We had the entire class and the RNs involved in the discussion. Hilarious!

Yesterday, I went to the difficult yoga class for the second time and I did better, though still short of breath at one point. I need to bring my oxygen with me next week. I am not even sore this morning! Orchestra rehearsal went well last night until break time when one of the members mentioned that he was the only one well in his household. The other bass player, Gerry and I stood up as if on cue and moved away. Neither of us can afford to get sick.

I am out early this morning to meet Natalie and Oliver for some coffee and a chat while her car is being worked on. Then, I will go to the rehab class and have some more fun with Sherman. 

Wednesday, January 23, 2013

"Nothing More We Can Do..."

I am heading back into yoga hell. The tough class. The class where everyone did head stands and neck stands and I was the oldest in the room. This morning. If I survive, I am looking forward to orchestra rehearsal tonight. The concert is February 2. Two weeks. Three more rehearsals. Tonight should focus on difficult passages of Beethoven's 5th Symphony and the second movement of Elgar's Cello Concert. My goal for today is to recover enough from yoga to totally focus on the music tonight. I want to make music tonight, not just read the notes.

Michael called his contact yesterday and was not able to get tickets to see the The Who. I let Chip know last night. With being gone for four days and the upcoming memorial service for his brother, Michael doesn't want to fly to Vegas or Arizona to see them. Too bad. They would have had fun together.

Yesterday, I spoke on the phone with Kathy from our rehab class. She had not be at the class for a few months because she and her husband bought a condo in Seattle. Their daughter lives there along with their first grandchild. They have been visiting every month but thought it would be easier to have their own place. We chatted about the class and Seattle and our illnesses. She has some kind of fibrotic lung disease but none of the doctors can determine the type nor the cause. She also has a terrible problem with her back and has a rod all the way up to her neck. Her one lung is totally useless and the other is only at 50%. She is needing increasingly more supplemental oxygen to get through her day and, just recently, is on it 24/7. She is a tall, very thin woman and because her thoracic cavity is very small and her back issues, she is not a candidate for lung transplants. She has been told that there really isn't much more they can do for her.

She is about five years younger than I am. Our children are about the same age. We both have been married for decades.

We talked about living with that information, the importance of having the serious conversations with loved one and having everything in order. She says she tries not to think about that fact and she does not let it run her life. They go to Shark games, they fly their plane to weekends away together, they spend as much time as possible with her daughter and grandson, she does not hide in her house or cry everyday or retreat. She simply lives life to its fullest. Every day.

She is living life well with a bad diagnosis.

Tuesday, January 22, 2013

Home, Job, Concert

Michael's home safe and sound. We hugged, sat in the garden, had some dinner and were in bed by 8:00. There is nothing like your own bed. During the trip to move his mom, he was able to see so many relatives he hadn't seen in decades and was able to spend some time with his sisters as well. It was all good.

My brother phoned to tell me he accepted a position a couple of blocks from his home (and for whom he has been working on projects for a few year) with NRAO. According to Wikipedia: The National Radio Astronomy Observatory (NRAO) is a Federally Funded Research and Development Center of the United States National Science Foundation operated under cooperative agreement by Associated Universities, Inc for the purpose of radio astronomy. NRAO designs, builds, and operates its own high sensitivity radio telescopes for use by scientists around the world.

It is Greek to me. He is finishing up his fifth patent before he takes on a new project for them. The good news is that they don't have to sell their house and move out of their area for a new job. A huge sigh of relief. They love where they live. 

The other reason he phoned is that he wants to see The Who in concert. Betty is not interested so he wanted to know if Michael would like to fly to Arizona or Las Vegas to see the concert with him. Then, Betty mentioned that they are also playing at the Oakland Coliseum. Chip could fly here, stay with us and they could go to the concert together. The only problem is the only seats available are horrible. Soooo, Michael is going to phone his serious contacts in the industry today to see if he can get two tickets. We'll see if he can make the magic happen! 

Monday, January 21, 2013

Big Waves, Big Move, Big Birthday

What a weekend here on the coast! The famous Maverick's Surf Competition happened on Sunday. The waves were huge and it drew about 30,000 people to a very small community. Here is the story and gorgeous but scary photos of the big waves.

What a game! We are so excited that the 49ers are headed to New Orleans and the Superbowl. I watched the game alone. Also, I have been sleeping three nights in the bed alone. Michael has been in Las Vegas since Friday moving his mother back to California after the death of her youngest son two weeks ago. She actually moved into her new place just yesterday and Debbie is also staying for a week to help get her completely settled and to visit. She is here from Tennessee. It is good for them to spend some time together.

Michael said there was no drama at all as everyone had cried all their tears. Anna had it so organized that she even had the boxes staged in loading order. They unloaded late in the afternoon yesterday and Anna and Debbie had Mary's room and bathroom entirely set up. God bless them both!

He just phoned to tell me that they are leaving LA around 8:00 this morning so he will be home around 2:00 this afternoon after swinging by his shop to pick up his car. Home. It is going to be 65 here today so I bet we will spend this afternoon on the swing in the garden.

Yesterday was our son's birthday. When I phoned around 2:00, I could hear city noises and he asked if he could call me back as he was heading to brunch. I phoned again around 6:00 and it went straight to voicemail. Michael said William phoned him around 9:30 and said that he had been out seeing different friends all day. Everyone wanted to celebrate his birthday with him. How sweet is that? Apparently, he hit several restaurants throughout the day. Michael told him we would phone him in a few days.

This morning, I need to shuttle mom over the pass for a dentist appointment then we are planning to have our favorite fish tacos for lunch. I even might see if she wants to come by our house for a few hands of our favorite card game - Shanghai!

It will be good to have our lives back to normal tonight. I discovered my life is very boring without Michael! I even made of list of all thing things I need to tell him!

Sunday, January 20, 2013

Men Friends

Last week, Michael was given an iPhone his friend Don bought for him from Craig's List. I took it to AT&T to set up and he has it on this trip to Las Vegas to move his mom. What a friend.

I am often stunned how women can start talking in a grocery line and share intimate, soul revealing thoughts to another woman. To a stranger. We talk. We connect. We support each other. But, men? Not so much. They don't chat with strangers. They don't connect with strangers. They just...don't.

Michael has amazing relationships with a group of men. Dear friends. He knows how to be a friend and he knows who to allow into his "friend" world. He has Don, Wayne and Ricky but also has a group of eight more who believe he is their best friend. They connect. They support each other. As a woman, it is wonderful to watch.

A few years ago, they needed someplace to have their "Boys Night Out." I offered to cook food for them then go to my bedroom to leave them alone. It was the only time they came here. I secretly smiled as I set all the food out. The conversation? Cars, gossip, sports, work, politics, jokes. But what I like the most was when one told a story of something that had happened to him. Sharing. I felt I was spying into the secret world of men. It was lovely.

It is this group of men who I am expecting to support Michael when I die. It is this group of men who will connect with him when all the drama calms down. They will surround him within their circle and take care of him. They will keep him active and in the world. I laughed out loud when Don told me that if Michael ever even thought about getting married again, he vowed he would kidnap him! Now, that's a friend!

Saturday, January 19, 2013


It's awfully quiet around here and I even had to make my own coffee this morning. I kept busy yesterday with a doctor's appointment in the city, lunch with mom and some fun time with Natalie and her kids. I didn't get home until 5:30! Michael phoned and all is going well, so far. 

Story #1: Thursday night, a woman phoned whom I have written about in past blogs. She is the wife of a long-time friend of ours who has been bedridden with lupus. For at least the past 10+ years, she has been full of pain medications and has tried to control her husband and children from her bed. It has not been successful and she has missed their childhood. The children are now of an age where they are graduating and leaving. Her time with them is almost up. A couple of months ago, she phoned to tell me she removed a lot of her pain medications. She sounded great. On Thursday night, she phoned to tell me that she had removed most of the pain meds and was going to removed them all. She was ready to get back into life instead of hiding in her bed. She was not going to let the disease control her life anymore. She now makes the bed in the morning so she doesn't crawl back into it. She now is downstairs on a couch with the family. She is trying to do things around the house to help her husband, though he is not totally convinced she is changing and is self protecting. It will take time.

Story #2: Yesterday, I was on the phone with a friend from the school who moved back east. We were talking about Matt and Mary and how they had not gotten dressed or left the house for several months. Even groceries were delivered. There was silence on the other end of the line. Since moving, my friend has not found a job or even a friend. She is not really motivated to do either. She asked me how to get herself out of isolation.

Isolation. Often a bad diagnosis also brings many changes including isolation. With my diagnosis and treatment with immune-suppressant drugs, I was no longer allowed to be around children. Germ-filled little ones. I no longer could work.

Overnight, I had lots of time on my hands. We are early risers and I continued to get up early and be dressed and ready to do something by 7:00. There was suddenly no place to go. I deeply missed my job and my social interactions and my professional life. All my friends worked.

I went right from my busy job to pulmonary rehab just twice a week but it got me out of the house and allowed for human interactions. The class was seven people, all at least two decades older than I was, but one was a nice woman and we became friends. After the eight weeks, she did not continue with the maintenance part of rehab and I began the new class on my own again. And that is when I met my rehab boys. I met my lifelong friends. Around this same time, I talked Dr. K. into allowing me to go to the other rehab three days a week. There is where I met so many people who have become such good friends.

So when speaking with the women in both stories this week, I suggested that they sign up for anything - senior stretch class, yoga, a gym - and go whether they feel like it or not. Get up, get dressed, get out. It is the first step. 

Compliment people. That always opens a conversation but it has to be the truth. "I love your boots!" "That color looks fantastic on you!" "Gorgeous nails!" Smile. I suggested to both that they just don't vomit their life story on everyone they meet. Give bits of information followed by questions about the other person. I have found that people think that you are brilliant and nice while all you are doing is being interested in them. Listening. It is the secret. Let your own story unfold slowly.

My one friend is very picky and critical and tends to over-think things. I told her to try and not look for the "perfect" friend and that she might be someone unexpected. Don't pass her by because the woman doesn't tick all of her boxes. After talking with someone a few times, ask her to meet for a cup of coffee. Again, don't over-talk. Listen. Try not to judge. 

I have learned that every single person has a lesson for me to hear and to learn. Every single person has a story, though some are more interesting than others. Some women I met were in my life just briefly, some are sporadic contacts and others have become dear friends. 

After hearing all of this, my story #2 friend said, "What I am hearing is that I have to have more gumption."

And that, dear reader, is the very first step out of isolation.

Friday, January 18, 2013

Online Support Groups

Brilliant. Simply brilliant. The people at the Coalition for Pulmonary Fibrosis have begun online support groups for patients, caregivers, transplants, information and grief groups. The e-mail and press release below offers all the information:

You may be like many PF patients, caregivers and family members.  You may not feel up to going to an in-person support group or you may not have time to make in-person meetings. Maybe there is no support group near enough to you.  Or, like some, maybe you're not comfortable with an in-person setting to talk about your disease or your loved one's illness with PF. 
The Coalition for Pulmonary Fibrosis (CPF) has many partnered support groups across the country (visit to learn more).  They are a great resource for many, but they don't fill the needs of everyone all the time, simply because they require you to be there in person.  
We hear you.  The CPF announces a new online support group program to add to our support group offering.   We've partnered with Breathe Support to bring this online option to our patients, their caregivers and their families.  
There is a patient group, a caregiver group, a transplant group, an informational group and a grief group.  Chances are, there is one that may provide the opportunity you want to connect with others going through what you're going through - right now. Here is the listing along with the group links so you can join right away:  
Available Online Support Groups:
Caregiver Forum – This forum is for those who are taking care of a person suffering from PF.  The group is also open to any family member or friend of someone with PF so they can get a better sense of the process for caregivers and share information on how to best be of help.  Link to Caregiver Forum:
Patient forum – This forum is for patients who are diagnosed with PF.  Link to Patient Forum:
PF Information Forum – This is a combined group of patients and caregivers where they can share concerns and challenges.  The group is also open to any family member or friend of someone with PF so they can get a better sense of to expect.  Link to PF Information Forum:
Transplant Forum – This exchange is for those who are investigating lung transplant as an option and who may be helped in their decision-making by information shared by others.   It is also open to caregivers and family members of anyone considering lung transplant.  Link to Transplant Forum:
Grief Forum – This forum is to help those who have lost a loved one to PF. Link to Grief Forum: 
And, though many patients love communicating via new social media platforms like Facebook, these online groups are private.  Your messages are in a safer online environment because they are closed groups - and each member is approved (and messages are seen by group members, not their friends or their friends).  
We encourage you to consider joining an online support group if you cannot get to a support group in person.  See the full CPF press release below.
Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis

Please keep in mind this Breathe Support disclaimer:  All content contained on, or available through, this online support group, is for general information purposes only and is not intended as, nor should it be considered as a substitute for, professional medical advice, professional psychological advice, diagnosis or treatment.  Do not use the information on, or available through, this online support group for diagnosing or treating a medical or health condition.  The Coalition for Pulmonary Fibrosis (CPF) does not take responsibility for the efficacy of the information being exchanged here – the remarks included represent information shared for general purposes based on the personal experiences of those using the online support group.  Group members are encouraged to contact their physician for any specific information related to any condition or treatment.

Coalition for Pulmonary Fibrosis Partners with Breathe Support for Online Support Groups to Address Specific Needs, Audiences
Groups provide support for Pulmonary Fibrosis patients, caregivers, families
 CULVER CITY, Calif., January 15, 2013 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today its partnership with Breathe Support to provides online support groups for Pulmonary Fibrosis (PF) patients, families and caregivers. 
Breathe Support provides online forums for PF patients, caregivers and families and those dealing with the grief of their loss.  There are separate groups for PF patients who are investigating or awaiting lung transplantation.
Breathe Support offers the support of a group with the ease of use of an online service.  Thousands of patients with PF have accessed these groups and it is an important offering given that in-person PF support groups are not available everywhere and the time and ability to travel to meetings can be a limiting factor for patients, as well.   By exchanging support in this manner, most patients are guaranteed the opportunity to talk with others.  The groups have evolved over time and they continue to grow and change based on the needs of the users.
"We are pleased to partner with Breathe Support to provide a service that appeals to the needs of our patients," said Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis.  “The online access point gives another option to patients who suffer from PF and often have limited mobility and require increasing amounts of oxygen and often experience much difficulty in getting to an in-person support group setting. It also provides support for patients, families and caregivers in a convenient forum for busy lives and schedules.”
Breathe Support provides a safer online environment for patients, families and caregivers by operating only with its memberships and is not held as an “open” forum like many online social media sites like Facebook and others.  The Breathe Supportonline groups are populated by members who are approved to join the groups and are monitored and moderated by Breathe Support leaders. 
“We’re here to support one another as we learn from each other about PF.  This is a safe environment where patients can share stories, concerns, fears, etc. about their PF diagnosis and living with PF,” said Taleena Koch, owner of Breathe Support and a group moderator.  “This is a forum for members and their thoughts and suggestions are important and beneficial to the group.”
Available Online Support Groups:
Caregiver Forum – This forum is for those who are taking care of a person suffering from PF.  The group is also open to any family member or friend of someone with PF so they can get a better sense of the process for caregivers and share information on how to best be of help.  Link to Caregiver Forum:
Patient forum – This forum is for patients who are diagnosed with PF.  Link to Patient Forum:
PF Information Forum – This is a combined group of patients and caregivers where they can share concerns and challenges.  The group is also open to any family member or friend of someone with PF so they can get a better sense of to expect.  Link to PF Information Forum:
Transplant Forum – This exchange is for those who are investigating lung transplant as an option and who may be helped in their decision-making by information shared by others.   It is also open to caregivers and family members of anyone considering lung transplant.  Link to Transplant Forum:
Grief Forum – This forum is to help those who have lost a loved one to PF. Link to Grief Forum: 
For further information about these support options, please contact the CPF
The Coalition for Pulmonary Fibrosis works on a national scale to support research for a cure and to assist patients. For information or to support this important work, please contact the CPF at 1-888-222-8541, or visit or visit us on Facebook or Twitter.

Thursday, January 17, 2013


Mom got approval for her upcoming amputation of her toe surgery. She is thrilled. Turns out that the doctors are just going to numb her foot. No anesthesia. We celebrated with a bowl of Russian cabbage soup at Max's Opera Cafe. We ran errands and I brought all the vegetables home and made some Ratatouille for tonight's dinner. The housekeepers are due this morning and I hate to dirty the kitchen after they have been here.

The orchestra rehearsal went really well last night. We played Beethoven's Leonore Overture surprisingly well then the real work began: the famous Elgar cello concert. It is difficult. The notes? No problem. It is the constant changes in time signatures and the need to count each and every note that is the challenge. I am not comfortable with the piece to play it with musicality yet. Hopefully, that will come before we have to perform it in concert!

I have a bunion I developed wearing boots in high school. My new Christmas shoes set it off and I wore them again to the doctor's yesterday. Last night, it was not happy. It ached and hurt and demanded attention. It finally settled down after midnight. It has been a long night.

We have one last night together before Michael leaves for four days. I am planning to take a yoga class, watch the 49er game, do some gardening, stay off the road Sunday because of the local big surf contest, rent a movie, sleep, nap and miss him.

Wednesday, January 16, 2013


I loved my day yesterday. Since I am now back in my own bed and Michael is feeling better, I wanted to make sure the environment was germ-free. I washed all the linens and, of course, ironed them all. I kept it a surprise and Michael told me this morning that he couldn't believe it when he climbed into bed well after I was asleep.

There is nothing like sleeping in fresh laundered and ironed sheets. Nothing.

I believe that sleeping in a bed that was made in the morning is treating oneself well. It is a luxury. I can't even think about climbing into a messy, unmade bed at night. When I was little and in bed for some illness, late in the afternoon mom would say, "Get up a few minutes and wash your face and hands while I fix the bed." She would straighten the sheets and tuck in any loose ends and fluff the pillow. It always felt better, thus I always felt better afterwards.

Make a commitment to make your bed every morning for two weeks and you will never allow yourself to climb into a messy bed again. It is being kind to yourself and treating yourself. You are worth it.

Yesterday also included a haircut and color and a dentist appointment. Clean teeth. Another luxury. I made dinner in the morning while washing the sheets and had it ready when we met back at the house.

Busy day ahead followed by an orchestra rehearsal tonight. Off into the world I go, just after I make the bed!

Tuesday, January 15, 2013

Nature's Perfection on Display

Mom made her way alone to the foot doctor just fine and it turned out she did not have a cold, allergies. She is going to a casino this morning, which is three hours away so it will be a long day for her. We are meeting tomorrow for a pre-op appointment. Yes, an operation. She had bunion surgery on her foot years ago and it did not heal well. The big toe and the middle toe have damaged the second toe so much, it is blue. She is having it removed. Yes, the toe is being removed.

The yoga class yesterday morning was fantastic and more in line of what I expected from a yoga class. It was attended mostly by women around my age or older! It was an hour of movements with twenty minutes of meditation following the class. I really enjoyed it and was energized afterwards.

Michael and I drove along the coast before sunset for dinner at a Taco Bell. Not just a normal Taco Bell but one right on a surfer's beach. It has a walk up window specifically for them and other beach goers. Even though we are experiencing very cold temperatures, there were still surfers in the water. We watched the sunset with its brilliant colors of blues and yellows and oranges. With Michael's four tacos and my Cantina Bowl without rice or beans, the grand total for this experience was $14.00 which included the million dollar view.

Monday, January 14, 2013

Dodging All Things Cold and Embracing Yoga Gently

Mom thinks she has a cold so she is driving to the foot doctor alone this morning. She doesn't want me to catch it. So far, I have dodged the cold bullet from Michael. Instead of being with mom, I am going to a yoga class. Yesterday, when telling Susan about my yoga experience last week, she was horrified! She expected me to enjoy lots of meditation and contemplation instead of the massive, exhausting workout. Today's class is supposed to be more, to use a yoga term, restorative. We'll see. I will report back.

It is so cold here, we had ice on the cars in the morning and there is black ice on the pass. The days reach the 50s but the evenings are brutal. We are very tender folks here in California!

Michael spoke with his mother and his father yesterday, which was the first time that had ever happened in his entire life. Recap: Grant left when they were babies never to return. We found him via the internet in 1997 and have met him three times.

Both are in deep grief. I spoke briefly with Grant on Saturday and he told me he knew something was wrong when he spoke with Matt. The past couple of years they had been forging a relationship. I told him we and the rest of the family had no idea he was consuming huge quantities of alcohol. Such a shock.

Michael is feeling a bit better and recovering from his cold just in time to drive the nine hours to Las Vegas on Friday and work moving his mother. It is going to be emotional in many ways. His sister Anna was telling me about cleaning out Matt's bedroom and bathroom. That must have been extraordinarily difficult. I can only imagine.

Michael and I did talk about the memorial service coming up in a few months and he said that he did not want to attend. I told him that he had to go for his mom. He just had to but we could make it easier by flying him to LA in the morning and home the same evening. Since I can't fly, I would not be able to attend.

Because we have gone to Las Vegas to visit Mary every year, we get offers of discounts from the big hotels on the strip. I could get Michael a room at one of them for $29.00 a night. I tried to encourage him to stay there as he could get away, eat some good food, have a couple of cocktails and just take a breath away from all the drama. Instead, the family has made a reservation at a cheap hotel near the condo, which is really only 10 minutes off the strip. I tried.

He is going to have a tough weekend.

Sunday, January 13, 2013

Simple Sunday

Saturday was very quiet except for the thrilling 49er game! Onward to next week.

Today is going to be fun. Susan from the ILD Support Group is driving down to our little coastal town for lunch then a concert at the mall where I performed with the violin kids before Christmas. The summer strings group from my orchestra is going to perform. Again. I went to see them in concert a couple of months ago because I adore a young violinist. He and a friend of Susan's are going to perform the Bach Double. One of my favorite pieces of music. 

Michael is on the phone with his mom right now. He is just letting her talk. It is going to be a rough road. His bio dad phoned yesterday so he will be returning his call this morning. 

Me? I am watching the Blues Brothers on TV and remembering showing it to the Middle School kids at the school. Great music. 

Simple Sunday filled with music. Bliss.

Saturday, January 12, 2013

Talked So Much I'm Hoarse

I spoke with Anna yesterday to ask how she was holding up. She got a bit teary telling me about having to clean out Matt's room and his bathroom. That must have been horribly emotional. Her sister Debbie arrives on Wednesday so she will have some help and support. Anna said that she and Mary clean and cry and laugh and talk. All very cathartic. 

Anna's daughter April will be working at Aunt Patty's house near Disneyland today to clean and prepare Mary's room and bathroom. The move will happen in a week.

I worked out at the other rehab yesterday then spent the day with mom. We sat and talked in her apartment for two hours, drove to have the most delicious gyros (I had the gyro salad with leftovers for lunch today), where we chatted another two hours then drove her home through a beautifully wooded area she hasn't seen in years. I think we talked non-stop the entire time. My voice is a bit like a frog and I am hoping it is not the beginning of a cold.

She told me about her friend who is 96-years old and lives in the penthouse at her place. He invited her up to see some artwork months ago and they have become friends. When she told me she was in his apartment, I said, "Mother!" She replied, "He's 96 and has a cane. I can outrun him!" She has not seen him in a while and he asked one of her friends what "that cute young thing" was up to. She told me that no one has called her that in many years! She looked fantastic and feels so great.

Today is my brother's birthday. They will celebrate with lobster tonight at a fancy restaurant in Laughlin, Nevada (just south of Las Vegas). They have been looking forward to it for months. There is no lobster where they live in the middle of New Mexico. 

And me? I will be buying shrimp for dinner tonight, watering the plants in the yards and waiting for the game to being at 5:00 tonight. A nice, simple Saturday.

Friday, January 11, 2013

Head Cold Germs

No news from Las Vegas yesterday but the news here is that Michael has a head cold. He stayed home all day yesterday. Having a cold makes me very nervous as he has to touch everything in the house and will share his germs. I moved into the guest bedroom last night and we are trying to be mindful of what we are touching. I really can't get sick. It could be the beginning of a big down slide. I must try to stay healthy and am taking lots of vitamins and Airborne.

My friend, the beautiful Susan from the ILD Support Group, is planning to come to the house on Sunday and we are going to a local concert together. I sent her a heads-up yesterday that she probably should not be in our germy home and I may also have a cold by Sunday. I hope not, but I thought she should know as soon as possible.

Chip and Betty are finally enjoying their 25th Anniversary present from our family in Laughlin, Nevada. They do love to gamble. They hauled their RV through a snowstorm in Flagstaff, Arizona yesterday and will enjoy their vacation before driving back to New Mexico on Sunday. They have fantastic lobster there and Betty has been dreaming about it for months. They almost didn't leave because her sister, who has been battling a variety of cancers, had taken a turn for the worse. I so hope they win some money and have a fun time together as 2012 was such a horrible year for them.

At the rehab class yesterday, Sherman and I celebrated his birthday with a card and a huge piece of his favorite Tiramisu from a superb Italian bakery. He is turning 88-years old on Monday. Today, I am going to the other rehab then will spend the rest of the day with my mom. I haven't seen her since Monday so we will talk non-stop until I leave her!

In the category of good news: The 49ers play their big game Saturday evening. We are so looking forward to the game, sick or not!

Thursday, January 10, 2013

Welcome to Yogaland

Yoga. My new phase in life which was highly encouraged by my lung doctor. I attended my first class yesterday morning at 9:00 in a beautiful studio overlooking the ocean. I was early, of course. I also had a hard time finding the front door! The parking area was at the foot of a huge altar where objects can be left. It took a bit to notice the small doorway to the left. I was there alone. Within ten minutes, the teacher arrived.

She asked about my health issues and we discussed the future lung transplants and my inability to inhale deeply. I also threw out some local names of people who recommended her class. She smiled.

I bought my first timers 3-card ticket for $10.00 per class. A three-week commitment.

Walking up a few stairs and opening a door, I entered the warm studio and laid my new mat on the floor. What am I doing here? I was nervous though my new yoga outfit gave me some confidence.

She began. As we worked on primarily stretching and breathing, I broke into a sweat. Me. Miss Cardio five days a week for eight years. It was hard. My legs were quivering at one point. Thank goodness I am limber but I have never worked on my core muscles other than on a treadmill. Thirty minutes into it, I felt nauseous. An hour into it, I felt my bowels rumbling. It was doing crazy things to my stomach and intestines! I must remember not to eat anything before the class. An hour into it, I felt a slight headache and I don’t get headaches!

I checked my watch. I thought it was an hour class. I was done. Oh no, keep moving. Finally, it ended at 10:45. I thanked the teacher and said I would be back. I told her that I felt like I was on the beginning of a long journey.

It was so unexpected that I loved it. It is different from my rehab workout so it is going to be good to mix it up a bit. My body is going to change.

I don’t remember the short drive home. It was slow, though. I was totally relaxed and so exhausted that I could not take the mat out of the car. I kicked up the heat in the house, grabbed a bolster and a blanket, put both on the carpet, laid my back on the bolster to open up my chest and promptly fell asleep for almost an hour. Finally at 12:30, I tried to eat lunch while wrapped in a blanket and stayed in that position in my chair until Michael got home at 2:00. I was still cold.

Wayne came by for two hours then I hurried to get dress for orchestra rehearsal. I felt the yoga workout in my shoulders as I tackled Beethoven. We fell into bed the moment I got home.

The bad news: Michael woke up with a cold. How can I escape it? If I get it, I know I will pass it along to my mom. Very scary. I will be washing my hands and trying not to touch anything he touches.

The good news: I am going to rehab this morning and will be celebrating Sherman's 88th birthday before class. My dear friend is doing great and the doctor says there is nothing wrong with him except his damaged lungs from smoking. I am so blessed to have him in my life.

Wednesday, January 9, 2013

One Big Giant Step Forward

Step by step we are adjusting. No tears yesterday. Michael was home very early again and even phoned to ask where I was. I had just left the rehab class and was heading home.

Today is a new day for me. A new phase. My New Year's resolution. Yoga. The class is at 9:00 this morning so I bought yoga pants, mat and a block for the event. It is held in a beautiful environment right on the ocean. After I get settled a bit, I will sneak some photos. Nervous? Yes. Anxious because of my breathing? Extremely.

The plan was to do nothing afterwards until orchestra rehearsal tonight. Well, life intrudes. I have to go over the pass to buy groceries, something that I really didn't want to do. It would be lovely not to go over the hill one day a week.

Also this morning before the class, we are meeting with Ron's tree people to arrange to have some trees topped and thinned and one tree removed. It is a tree that Michael loves. Not a large tree but a tree that protects us from seeing other homes from our side yard. A Mayten tree. The problem? It is messy and ugly and needs constant trimming. I am tired of picking up the small leaves throughout the house as we track them in on our shoes. So, he finally relented when Ron asked if he could whack it back for more sun on our shared area. Thank you, Ron. It was enough for him to realize it had overstayed its welcome. I had also noticed that our stand of birch trees has some mold on it's highest branches, which could kill them so we will have them trimmed and topped.

Life. But our thoughts are still with Anna and Mary sorting through things in the condo and Matt being cremated today. We did learn that Anna's husband and son will also be helping Michael and the twin move the entire contents of the condo to Orange County. Anna said there is a lot of stuff. She asked Michael if he wanted anything and he said no. He thought it was odd that one niece asked for Matt's Hawaiian shirts. I am just observing it all from afar.

Tuesday, January 8, 2013

Life Continues

Michael had fewer tears yesterday. Plans are being put into place. We are out of the loop of decision makers and just doing what the others ask of us. I am totally staying out of it all. This is something Michael needs to handle with his family. His sister Debbie is being flown to Las Vegas to help with the packing up of the apartment. Anna arrives there today. I noticed that Michael seems to need to be with me right now. He has been leaving late in the morning and coming home around 2:00 in the afternoon. I asked if he wanted to go for a ride along the ocean or up through the trees. No. He just wants to be home. With me.

I spent the day with my mom, which is always a pleasure but even more so yesterday. It was the first deep breath I had taken in a few days. Moms are the best.

The rehab class is today. It will feel great to get back to my routine. Sherman's 88th birthday celebration is planned for Thursday. I remember when he turned 80!

We are going to need food in the house so I made the menu for the next week. It seems that life continues. Wash needs to be done. Pots need to be watered. Food needs to be bought. So, the upcoming dinner menus are:

Pork Chops with Thai Green Beans -

Houston Chicken -

Coconut Shrimp (a bit high in carbs) with a side salad -

Breakfast is often a bowl of chopped veggies from Trader Joe's with a small amount of Trader's Goddess Dressing and a low-fat string cheese stick. I think I will make a No Crust Pizza - -  and cabbage for lunch or I sometimes switch the two. Add a few pistachios for my 3:00 snack and that is my food for the week.

Monday, January 7, 2013

The Waiting Ends

We got the call Sunday morning at 9:45. Matt had died sometime during the night. Alone. That bothered Michael until I reminded him what we learned from hospice: people choose if they want to die surrounded by people or alone. That is the reason they recommend that people take a 10-minute break every hour while holding a vigil. Matt wanted to die alone.

Michael cried on and off most of the day and I was awakened as he cried a bit in the middle of the night. Plans are being made. In two weeks, he and the twin will drive to Las Vegas to help pack up her apartment and drive it all to Orange County to be near Anna and Mary's sister Patty. She wants to stay with Patty for a while. They are beginning to make plans for a memorial service.

We called William to let him know the news. He barely remembers Matt. I asked that he send a card with a note to his Grandma Mary. It would mean a lot to her. She doesn't know him well, really only through our tales of his adventures throughout his life. She is rather in awe of him. A note from him would give her comfort.

We are going to continue our lives today. Michael is going to work on a project, I am going to work out  then visit with my mom but thoughts of Matt will still be in the forefront today. Huge changes will be happening within the family with ripples lasting for years.

Sunday, January 6, 2013

A Small Break

Anna flew to Las Vegas on an open return ticket yesterday to help her mom and she really wants to see Matt one more time before he dies. She is going to stay through to the end, help with the burial arrangements and try to bring her mom home with her. She is also going to try to make sense of her financial situation.

I have huge respect for her for stepping in. It is going to be very difficult.

There is a major streak of stubbornness in Michael's family including all the children and grandchildren. It can be good but it can also be a road block when they stick their feet in the sand and refuse to move forward. We, who married into it, can only shake our heads. For example, my son would rather starve to death and be broke than to work for a band he doesn't like personally. It's not about their music but it is about whether they are good humans. I am worried that this streak will allow Mary to stay in Las Vegas, huddled alone, unable to go anywhere as she doesn't drive and just wait for death to come visiting her. She will be 80-years old this year but she is in great shape. I so hope she allows herself to try to stay with Anna for a bit.

It has been a waiting game here. Michael will talk with Anna today to get her input on everything but the cell phones are never out of our reach.

So with all that has been happening, we had to go to a surprise 70th birthday party of one of Michael's closest friends. I also adore his wife. We were the only non-family invited. Knowing this was coming, Michael had not mentioned Matt to his friend until he sees him today. He did not want to put a pall onto his celebration of life. We got dress up and went. It felt very weird to smile and laugh. It was a four hours escape for us. A break. Our phones where on our bodies so we would feel the vibrations of incoming calls.

It is a gloomy, rainy, cold Sunday which parallels how we are feeling this morning.

Saturday, January 5, 2013


We have been advised that Matt's death is eminent. Michael was a mess upon hearing the news yesterday afternoon and his sister Anna asked us to phone their dad. I ended up making the phone call as Michael was unable to speak.

Mary phoned later in the evening, the doctors had explained to her that Matt was never leaving the hospital. She had been expecting him to be released to go home. He was hallucinating and they had removed the morphine and the feeding tube. I don't know why but that is what was reported to us.

So terribly sad. So unusual that the youngest sibling is going to be the first to die. Michael reminded me yesterday about his Aunt Patty's son Sean, the youngest of four, who died in his early 20s. Michael's Uncle Jerry's son, the youngest of two children, also died young just about five years ago. Both were killed in motorcycle accidents.

Anna also told us that the VA will pay for the burial or cremation expenses and that her husband, a public defender, will do all the paperwork. It felt so odd to even be discussing this right now.

So today, we will both be going separately into our Saturday routines but each will keep a cell phone close at hand at all times.

Friday, January 4, 2013


This is a very difficult blog to write: Michael has four siblings, the youngest being Matt. Michael and I were dating and the first time I met him was when I was invited to sing at the wedding of their oldest sister Anna in 1972. He was fourteen-years old and sitting in a chair in front of the TV with a beer in his hands. That shocked me at the time.

Matt lived with us for a short time after we got married. Michael got him a job but he missed work due to drinking. After he vomited in Michael’s car, he threw him out and sent him home to mom.

After a brief stint in the army, he eventually wed, had a difficult marriage, two children and a divorce. Instead of staying in the area where his children were being raised, he ran home to mom. He also never had a relationship with his children who are now in their early 20s.

Mary used to say that she would always “be there” for her children. (My parents, on the other hand, said to get an education, get a job and jump into life. Once we were gone, we were gone.) All but Michael and the twin returned to her care as adults at one time or another. Matt would work, hand his paycheck to her, have her pay bills and give him money for beer and cigarettes and gas. He never left home. He never left her again. All my memories of him have him sitting in a chair in front of the TV with a beer in his hands. For decades.

Many years ago, when Mary returned to Illinois to live with her sister for a couple of years, he followed. He never got a job. We visited and Michael was appalled that he was living on a cot in their basement. He left me at the hotel the next morning as he went back to talk with his mom and Matt. He asked Matt, “Have you no pride as a man?” Even though she didn’t need him at that point, his excuse was that he had given his life to take care of mom. But in reality, it was safe, nothing was expected of him, he was lazy and scared of life.

He was also drinking a lot.

Michael and I visited their apartment in Las Vegas at the end of our last cross-country trip almost two years ago. We brought food and were shocked to discover that they were in their pajamas and hadn’t been out of the house in weeks. We also noticed that Matt’s feet were swollen and red.

A year later, his feet had become very red and very swollen. I encouraged them to contact the local VA as he had only worked four out of the thirteen-years they had lived in Las Vegas. He refused. He didn’t want to go to any doctors. It finally got so bad and so painful that he went to a private hospital emergency room where they treated him for cellulites and sent a large bill for which is he now being sued.

I still encouraged them to contact the VA. For the past ten years, when it became clear that he was incapable of working, I also encouraged them to have him apply for Social Security Disability for depression. I believe that he had been clinically depressed his entire life. He would get angry with me if I brought up the subject. In the meantime, Mary is in total debt trying to support the two of them on her small Social Security income.

What I didn’t realize and his sisters didn’t realize and his brothers didn’t realize was that he had been drinking heavily for many years. Vodka. Mary never told anyone.

Matt finally went to the VA when his feet and legs became so swollen that he couldn’t walk and also was experiencing nerve damage. He never allowed anyone to go with him. He never mentioned to the doctors that he drinks. They tested him for a lot, discovered he had Hepatitis B and sent him home. He never pushed for additional help or asked for an advocate to work with him and really didn’t want to hear from me.

Finally when it became so painful, he went into the hospital, they diagnosed him with alcoholic cirrhosis, which was the cause of the swollen legs. They sent him home to detoxify. That was where we were just before Christmas. He was vomiting and had massive diarrhea everywhere he hobbled or crawled. His bed was a mess, Mary was cleaning up poop throughout the house and he was in full detox mode. He was shaking, cold and out of his mind. (Mary is being checked for Hepatitis B today.) He also refused to go to the hospital.

While this was happening, Mary got a notice in the mail that Matt would be arrested if he didn’t pay $150.00 in child support payments. He had not paid any child support for many years, as he never had a job. Instead of letting them come to see him in his bed, she put the $150.00 on her ever-increasing credit card bill. This is the dance that they have done since he was a child. She always rescued him. Always.

Something happened when she and Michael were on the phone together two days ago. She was telling him how hard it was to clean up all the poop and he reminded her how strong she was, she had cleaned up for husband and mother before they died. It clicked. She realized that she was strong enough to take control, walked into Matt’s room, said she couldn’t help him anymore and she was calling 911.

The paramedics came, took one look at his shriveled arms and his distended trunk of his body and rushed him to the hospital. Apparently, he was hours from death. They drained 6 liters of fluid from his body, he is currently on morphine and we really don’t expect him to live. He told Mary that he wants to die. His body is shutting down.

He is 56-years old.

Michael and Anna spoke together last night and confided in each other that they believe that if he doesn’t die today, he will next week or next month. He will not survive this.

During all this drama, we got a phone call last night from Michael’s bio dad Grant. (Search “Grant” in this blog for our three contacts with him.) Mary had phoned him to let him know how ill Matt was and that he was in the hospital. Grant and Michael talked and Michael was able to answer a lot of their questions. He and his wife also realized that Matt would probably not recover. But, Mary phone yesterday and told me she is getting his room ready for him to maybe come home on the weekend. What could I say?

Lots of sadness. A charming, adorable kid. A handsome hunk of a man. A lost soul.

Thursday, January 3, 2013

GERD, Dying Conversations and Choosing to Live

Reader's Digest's January 2013 edition includes a couple of interesting articles. The first one is to announce a device for drug-free GERD relief. There seems to be a correlation between interstitial lung diseases and GERD. We all seem to have it! “The EndoStim system, powered by a matchbook-size device implanted under the skin in the abdomen, delivers tiny electrical impulses to the sphincter muscle between the esophagus and the stomach. The jolts opens the muscle for swallowing but close it other times to prevent reflux.” It is available right now in Europe and the clinical trials are planned for the US by the end of 2013.

A hospice chaplain wrote the next article. As a young chaplain, she thought her job would be to discuss dying and talks about religion with patients just prior to death. What she discovered was that the conversations were always about families: about their mothers and fathers, sons and daughters.

They talked about love. Many aspects of love. At the moment of death, she found that so many people would reach out a hand and call out to their parents.

I met Michael less than a year after his appendix burst and he almost died. They had burst five days before he saw a doctor as he thought he had the flu. He had gangrene throughout his body and into one leg. He walked out of the hospital at 124 pounds a month later.

But, he really should have died. The only reason he didn’t die was because of his age, or so the doctors told him.

He told me that he remembers being allowed to make the decision of whether he wanted to live or to die. He said he was in a lovely, calm, warm place and he knew that if he chose to live, it was going to be a lot harder than just dying. Somehow when I am anxious about the thought of dying and how I will physically die, I remember what he learned.

Thankfully, he chose to live.

Because of this, he has always felt that the years that followed were “free.” He shouldn’t be here anyway. I think it is why he was able to accomplish so much because he had no fear. And he really has no fear of dying.