Living Well with a Bad Diagnosis - Lung Disease

Tuesday, November 30, 2010

Life's Disappointments


Michael and I were talking the other night about another of Barbara’s blog questions:

Has there ever been a person that you tried desperately to help but you wanted it more than they did?

When we rented our very first house after we married, a family moved in across the street. He was a mechanic and she was a waitress at a coffee shop. She had two kids from a previous marriage. They were nice. They were fun. Boy, did they like to drink.

Michael and I were just babies, barely drinking age. We tried all the latest drinks but always knew when to stop. We soon learned that this couple never could find that line. On Saturday nights, we would combine our food to share dinner together. We would listen to music and they would do their funny 1950’s dances. It was fun.

Always, there was a lot of silence coming from them the next morning, as they would have continued drinking after we left for home. It took us awhile to figure out that the husband had a major drinking issue. It became more evident as he would begin to drink beer after work every night and a beer belly emerged from this skinny guy. They always had money issues and Michael tried to help him out by getting him side work.

For years, Michael tried to help him. Well over ten years. The alcohol continued to flow, their house became dirty and depressing, the children were a mess as they matured and the couple was not willing to change anything. He began to rely on Michael for everything.

Michael backed away very disappointed that alcohol controlled the entire household. And it wasn’t good. The last time we saw them, it was still the same. Everything. It was sad and depressing.

We also had another relative live with us twice while he tried to get his life together. We discovered that alcohol was also an issue with him. Michael found him a job and one day he just didn’t show up. He had been drinking. He was the type of drunk who drank until he passed out. Michael had pulled strings to get him a good job and was very disappointed that the guy blew it. He was fired. Michael sent him packing.

I thought it was interesting that with these two examples, both of Michael’s disappointments, revolved around alcohol. Both people of Michael’s examples are still dealing with their issues. Both have never moved forward into life. They are both still in the same hole they were in almost 40 years ago. So sad. Very disappointing.

Monday, November 29, 2010

Cranes



Beautiful cranes. In the Japanese culture, they are a symbol of good fortune and longevity because of its fabled life span of a thousand years. It also represents fidelity, as Japanese cranes are known to mate for life. Even after a mate dies, the other stays true and never mates again.

My parents embraced cranes as a symbol of their life together. My mom still feels married to my dad even though he died in 1997.

For her 80th birthday two years ago, she asked that we somehow include my dad in the celebration. It took me a while but I got it. Working with our friends Jill and Wayne, their entire family taught and helped me to make 80 origami cranes. Additional cranes were made to be included in each invitation.

At the luncheon at the famous Sheraton Palace Hotel, we had a gift box for each person with a photo of my parents under the top lid. On top of each box was also a crane, which was to be reunited with the other crane from the invitation. Then, before everyone was seated, I placed all 80 cranes down the middle of the long table. My mom loved it so much and felt dad’s presence. It meant so much to her.

After the party, she gathered them all and they are now is a beautiful tall glass vase in her dining room where she walks through so often during the day.

Michael and I began our Christmas shopping and went to our favorite store in the whole world:  Gumps. Imagine my delight when I discovered two rather large white porcelain origami crane Christmas ornaments. Guess what mom is getting for Christmas.

It will be reminder of dad and their life together. I know she will be delighted.

Sunday, November 28, 2010

Depression


So many of the people I meet and talk with are dealing with depression, especially this time of year. They ask how I have avoided it.

I am totally convinced that all the exercise I force myself to do kicks in the proper nutrients or hormones into my brain and fights off the depression. I believe that some people have a tendency for depression and that I, thankfully, am not one of them.

I guess I try to focus on today. I try not to think about all the “what ifs” that would have happened so I would not be facing such a grim future.

The holidays can be hard. I understand. It is pure joy to see everyone but it expends a lot of energy and we may not be at our best. It is fun to go to parties and see people but there is the constant worry of being in a crowd of people when one is immune suppressed. It is lovely but also sad as I realize that I have far fewer holidays than I should have in my future.

The challenge is to not put pressure on ourselves to have everything perfect, go to every event and cook all the goodies. The goal is to stay healthy. The goal is to remember to appreciate our family and friends and to drink in our moments together. The goal is to give ourselves a break.

Adjust and keep moving forward.

Saturday, November 27, 2010

Educating Others about Lung Disease

It happened again. Someone was told about my illness, wanted to ask a few questions and was rather surprised that I can talk about it all without becoming emotional. My goodness, after almost six years of living with a bad diagnosis, if I don’t have it settled in my mind and able to talk about it by now, I would be an emotional mess.

As a former educator, I love talking about all the things that I have learned:
  • There are many different types of lung diseases that people have never heard of.
  • Not all lung diseases are caused by smoking and in fact, very few are related to smoking.
  • An ILD has the opposite issues from an Obstructive Lung Disease like asthma or emphysema.
  • Interstitial Lung Diseases “harden” the lungs thus making them smaller. The main problem is the exchange of gasses at the end of the bronchi.
  • Obstructive Lung Diseases feature mucus filled lungs that become loose and floppy. They then rest on the diaphragm near the stomach, which causes people to feel full and not eat. That is why people with emphysema, for example, are usually skinny.
  • Yes, mold and fungus exposure can kill you.
  • No, we don’t have to move to a warmer climate because I breathe easier in cooler moist climates.
  • I know I don’t look disabled. Do you want me to demonstrate? I can run up these stairs to show you what happens….

It is all about educating others.

Even with the above, many people still are skeptical about the cause of my disease. I usually very casually mention OSHA’s involvement and that usually ends that line of questioning.

I have also discovered that I feel better after talking about it. I try not to carry on but try to just answer their questions. With a smile. By the end of the conversation, I usually try to remind them that life is unexpected and things happen. Live every day. Grab life by the tail and dance everyday.

Friday, November 26, 2010

Thanksgiving Feast

Well, it was crazy good. What a day!

Lee and Jeff worked their brains out and served a very traditional Thanksgiving feast: picture perfect turkey, stuffing, green bean casserole, homemade cranberries, mashed potatoes and gravy. Dessert was pie. Two delicious pies: apple and pumpkin.

Mom and Shelley were there and it was just the best to spend some time together. I guess that is one of the points of the holiday. William phoned. He and Kimberly were spending the day cooking at her father's house. They were having rack of lamb.

It was my dad's birthday. He would have been 88-years old.

Michael and I took it easy but I feel I took a step backwards. I coughed most of the night and ended up on the couch so I wouldn't wake Michael. There is so much to do to prepare for Christmas but I think we both need to take it slowly for a few more days.

Thursday, November 25, 2010

Happy Thanksgiving


My dear readers, I wish you all a wonderful Thanksgiving today with your families. Hold them close. Love them. Forgive them.

For the international readers, look around your dinner table tonight and give thanks for all the goodness in your life.

Enjoy the day.

Wednesday, November 24, 2010

Keep it Simple

Years ago, I tended to worry way too much. If x happened, I worried about all of the possible and impossible ramifications. I worried about y, z then back to a. Too much. Being ill, I worried so much about the future. The “what ifs” haunted me.
Though the years, Michael would look at me, shake his head and say, “Just keep it simple.” It has been a running theme throughout our marriage.

As I am making my huge Christmas dinner and gift buying plans, he reminds me to keep it simple. I have learned through the years that it is true. The simpler the better.

The running theme through my head as I live with a bad diagnosis is to “adjust and move on.” Adjust for the disease but keep active in life. It has helped me stay positive though I sometimes feel like a prizefighter ducking and weaving.

So as I face the holidays, I will remind myself to keep it simple, adjust for the disease but keep moving forward.

Good plan.

Tuesday, November 23, 2010

Dreaming



Another topic from Barbara’s list was:

If you had a ton of money, what are the first three things you would do?

Hmmm.

I asked Michael. Here was his list:

  1. Make sure family is taken care of – education, housing
  2. One unbelievable automobile (He is a car guy, after all.)
  3. Move to a penthouse of a nice hotel with maid and room service.

I like the way he thinks!

My list was:

  1. Pay the mortgages off of all our siblings and pay for the education of all the nieces and nephews
  2. Fund a business for our son
  3. Have clean and ironed sheets on our bed every night (And ride in Michael’s one unbelievable car!)

What are the top three things you would do?

Just a little silly but fun to dream about.

Monday, November 22, 2010

Greatest Struggle as a Parent

From Barbara's list of blog topics came an interesting question: What was your greatest struggle as a parent?

I think through the years, that answer would have changed. In the beginning, it was trying to function with the lack of sleep. Later, it was a lack of sleep worrying about him driving around in the early morning hours.

Looking back on child raising, I think the greatest struggle was that he was an only child. I so wanted that not to be an issue for him. He was raised around other kids, especially Robb from the play group, had friends from school and I was even told while he was in elementary school that he did not have any only child issues.

There was always underlying pressure being an only child, as all of our attention and expectations were focused on him alone.

But now I realize that I probably held him closer because he was our only one. When to step in? When to let go? Worried if he was a moment late. If anything happened to him, we had no other. No backup. It was rather daunting. 

I don’t think he will understand until he is a parent.

As we are growing older and now that I am ill, I realize that he has the entire issue of dealing with older parents on his shoulders. Alone. No backup. 

Quite a burden.

Sunday, November 21, 2010

Watching and Living the Changing Roles of Women

I love watching the TV series “Mad Men.” What I find fascinating is the role of the main character’s wife as she evolves from a 1950’s frilly showpiece of a wife to a woman who is trying to find her own voice. She falls, flails, and fails but keeps moving forward. I also love to watch the growth of the one female character who is the “working gal” moving up the ladder into territory known to few women during that era. The contrast and the similarities of these two women and their changing roles is the under theme of the series.

I was with some young women and we started talking about the many pressures on today’s women. They are expected to be smart, beautiful, and athletic, earn a high income, perfect mothers and supportive partners and also be strong, Work and be a perfect parent. And look good at all times while doing it. So much pressure.

We talked about the ongoing battles for equality that still exists in the workplace. As I told them my stories, they were shocked.

Only about 35 years ago – a short time, really -  I was in college. I wanted to major in stagecraft - lighting and sound. My teacher asked why I was in the class. I told him that I wanted to learn and go to New York to work in the theater. He laughed. Sorry, that was impossible. I asked why? He replied, “Women are not allowed in the union.”  This was only 1972 not the 1950’s.

Later, after we were married and I was working at my first real job, I watched as very competent women where overlooked for promotions and raises. There was one in particular who had a tremendous amount of experience in the industry and had paid her dues in the company. She applied for an outside sales position where the real money was made. Another person with far less experience got the job. A male. She sued.

She told me that they settle the lawsuit and she was paid a lot of money to go away. It was better to pay her off than to allow a women into sales or management. Women were only allowed as support staff. I left soon afterwards.

At the school where I got sick, they professed to being so fair. So liberal. Ha! Through a snafu, I learned that the male teachers were paid a tremendous amount of money more than the female teachers. When I was moved into management, the head told me that I was not going to get any more money as, “Teachers always make more than administration.” Really? Why do teachers go into administration? Because they are working their way up the ladder, which includes pay increases.

I hate being played.

As women, we have to learn to negotiate a proper wage. Men still do that better than we do.

Equal pay is still not in the workplace. The Equal Rights Amendment, so much in the headlines in 1972, is dead. 

Saturday, November 20, 2010

Visiting Dr. K.

It has been lovely that I have been so stable that I only see Dr. K. every six months. Last Thursday was my day to see her.

After driving to the university center for six years, I have a secret back way that I have discovered which takes me through beautiful neighborhoods and has very little traffic. But, other areas can be a challenge. It still can take between 30 and 90 minutes to get there, depending on traffic. I always plan for two hours so I never feel rushed, which makes me stressed and out of breath. I arrived an hour early.

As you know, I have been fighting a cold and a bad cough.  Thursday was the first day that I was feeling a little better so I drove alone.

They offer free valet parking for disabled people just outside the clinic office building. Lovely. Thank you.

After killing time in the lobby, I headed up to the clinic early. They took me right in and I sat in a little room waiting. I don’t mind waiting. I realize that this is not a normal doctor’s office. This is for a place for really sick people and sometimes they need more time.

Dr. K arrived. She looked great, commented on my new haircut, asked about our holiday plans, bemoaned the fact that our children were not married yet (her four are around William’s age) and we just had a nice chat.

Then I told her about my cold. She listened to my chest. “Oh my,” is all she said. So, I am now back up to 40 mgs of prednisone and two week of an antibiotic. We have cancelled a dinner at Rick and Natalie’s house this weekend and wound down our Thanksgiving plans. It is supposed to rain all weekend, which will help me stay in the house and rest to prepare for the holiday. I am not leaving the couch.

I booked Dr. K. for an appointment in May. Hopefully, I will be stable enough to not see her until then!

Friday, November 19, 2010

Homes for Sale and Rent

As I wrote in my September 1st, 9th  and 10th  blogs, there are many homes in our little neighborhood for sale. Another house across the street is now for rent. Lots of changes happening. It reminded me of buying our first home.

In the fall of 1975, we moved to our little town. We rented a house in an older area near downtown and just blocks from the beach. Wonderful location. It sat on a very large lot – rare for California. We rented it for $425.00 per month. The twin moved with us.

In the meantime, we sold a car to buy a nice lot for $8,500 in a town just north of us. It was a growing area and we thought we would build a house on it one day. It is now worth well over $200,000 today.

Near the end of the rental period, the owners asked if we would consider buying the house. They had bought it the year before for $45,000. They wanted $60,000.

I remember my dad, who had not been watching or in the real estate market for more than a decade, said that our house wasn’t worth $60,000. There wasn’t $60,000 worth of anything in the house. We had done our homework and knew that it was a fair price.

We compared other houses on the other side of the hill to our house. In the same price range, ours was cleaner, needed no work, four bedroom and two bathrooms and in a very safe neighborhood. We decided to buy it. The former owners took our lot as a down payment and we were able to get $10,000 for it.

The mortgage was $435.00. Ten dollars more than the rent! With taxes and insurance, it was a monthly payment of $552.50.

I remember that we were also buying a used Porsche at the same time. We had to come up with around $5,000 within two weeks. Michael kicked into gear, sold another car and called several people who owed him money. He did it.

After paying for the closing costs and the final papers were signed, we were broke. We began again.

Six years later, we sold that house for $125,000. My dad was shocked.

Thursday, November 18, 2010

The Promise



I have referred to our son in many blogs and even wrote about his childhood in the May 13, 14, and 15 2010 blogs. His birth. It was a very difficult one as his cord was wrapped around his ear. His heart kept stopping. We don’t know how many times. I had an emergency caesarian and he was expected to have cerebral palsy or learning disabilities at the very least. He did really well in school and was fine. We were very blessed.

In recovery, I had to lay flat for 12 hours so I would not have spinal headaches. I just saw a fleeting glance of him before they checked him out, cleaned him up and put him into Michael’s arms. In those days, no husbands were allowed in the operating room.

I will never forget that my family waited hours for me to recover enough for company. Each came in alone. Michael was just relieved that we were both alive. My dad said, “I don’t know what you did but you made an absolutely huge beautiful baby.” It made me happy but I still had not held or seen my baby.

Early the next morning, a nurse came by to say that I could get up and that she would be back to put the side rails of the bed down and help me walk to the nursery. I waited. I waited a bit longer. I wanted to see my baby. I wanted to make sure he was okay. So, with the pain of a caesarian, I crawled down to the bottom of the bed dragging the pole with the fluids along with me and hopped gingerly onto the floor. It hurt but I hardly noticed. I was on a mission.

The pole and I made our way to the nursery. That one. The big one. They wheeled him back to the room with me and left us alone. I laid him on the bed and took everything off. I counted fingers and toes. I wrapped him back up and held him close. He had fought so hard to be born. I whispered in his ear that I promised that I would be the best mother to him that I could possibly be. He looked up at me and really stared at me. It was an amazing moment.

After five days, we took him home, laid him in the crib then Michael said to me, “Now what do we do?”

Wednesday, November 17, 2010

Prednisone and Bone Scans

Every two years since I have been taking prednisone, I have had a bone scan. The drug is known to encourage calcium to leach from bones. The previous scan indicated a bone loss in my spine but not in my hips. Dr. M. said that the hip number is the more important indicator of bone loss.

Osteoporosis has no pain until it is quite advanced and fractures occur. Women are usually shocked when they are told they have thin bones and future problems with fractures. A friend's wife broke several ribs just turning over in bed. Again, there is no pain when bones are losing calcium. Women who are post-menopausal should have a baseline bone scan then others every two years.

If you have had lots of milk, yogurt and cheese all of your life and feel you won’t have an issue with calcium depletion, please beware. You can still get osteoporosis.

A bone scan is a cool test. You lay fully clothed on a table as a small machine passes over you several times. No pain. So simple. The numbers are then compared to the previous scans and reported back to the doctor. Dr. M will phone with the results within a week.

Tuesday, November 16, 2010

Cold, Again



I am sick.

Sneezing, blowing and coughing.
Coughing a lot at night.
The cozy couch in the family room is far enough way from Michael so he can sleep.

I feel just awful.

It came on around Thursday and hit with a vengeance on Saturday. I went into full attack mode:  Vick’s Vapor Rub on the bottom of my feet and antihistamine at night, Airborne and Zicam throughout the day and lots of soup. Today’s was a kale, onion, garlic, Yukon potatoes, organic chicken broth with small pieces of turkey kielbasa sausage soup. Made my nose run!

I am seeing Dr. K. later this week and know that she is going to hear a lot of gunk (technical term!) in my lungs. At first, I thought I was hearing a small cat when I realized that the noises were coming from my lungs when I exhaled. Scary.

This can be passed on to others so I am not going to rehab until I see her.

On a positive note, I have had no appetite and may have lost a few pounds!

Monday, November 15, 2010

Autograph Anyone?



At the rehab class on Thursday, they asked Sherman and me to poise for photos with the rehab equipment taken by a professional photographer. They are going to be published in the hospital’s directory of services that will be mailed to every person in the county. Oh my. Wish I had some notice! I was not dressed for it but thankfully, I had just washed my hair that morning.

It was a surprisingly long shoot. Mine took about an hour.

At one point, the photographer said I looked familiar and asked where we could have met. I always mention the school first. Bingo. She said that her niece and nephew went there. It turned out she is an aunt to Christien’s kids. She was Christien’s ex-husband’s sister. What a small world.

So, I will be famous! Lifting weights. Oh my.

Sunday, November 14, 2010

The Famous Honeymoon Story



It is time to share one of the most famous stories in our family. It is our honeymoon story. It is a small wonder that we stayed married afterwards!

We were married at 19 and 20 years old. Michael turned 21 two days later. (Read the November 11, 2009 blog for background information.) We bought a 1966 Mustang just before we got married, I wanted to see the Grand Canyon, we waited a day for the car to be insured then we headed off on our happy honeymoon.

We planned to first visit the relatives in LA and have always wanted to drive Highway 1 along the coast. It was torture. It took over 12 hours to get to our horrible hotel in Long Beach. We have never driven it again. At the hotel, they didn’t believe we were married, demanded ID and we were shocked at the hotel room. There were plastic curtain. Plastic. Horrible. It was the famous round Holiday Inn at the airport. Why we stayed there, I will never know.

Strike 1

It was early September. It was Labor Day. It was very hot.

We headed into the Mojave Dessert at mid-day. It was over 110 degrees. There was no interstate at the time and it was a small two-lane road. When coming up on a slow moving truck, passing had to happen. It was very dangerous and a very scary trip.

Also, we didn’t know that the radiator on the car was old and leaking. They had put rocks in it before they sold it to us. We could not go over 55 miles per hour or it overheated. No air-conditioning either. It was REALLY hot. I was REALLY miserable.

Exhausted, hot and totally drained, we arrived in the early evening at Williams, Arizona which is a town just south of the Grand Canyon. The main street is one way heading east. We thought we would leave early the next morning and see the sights at the Canyon before the crowds. We had not made reservations. All the hotels were booked except for one which, of course, did not have air conditioning. Did I mention it was HOT?

I think it was well over 120 degrees in the room, which had two single beds. Our honeymoon. We made our way to a Rod’s Steak House steak a few doors down. Years later, we passed through Williams again and the restaurant was still there! The food was marvelous but even more importantly, it was air-conditioned. We stayed as long as we could before heading back to the hot hotel room.

It was horrible. Michael said, “I’ll be right back.” Neither of us had any experience with alcohol of any kind except for Gallo wine served at our house with Sunday dinner. He returned with a small bottle of Wild Turkey and two cans of coke. We proceeded to have several drinks, which allowed us to sleep in the heat. At one point, I turned to Michael and said, “I am so hot that if you even think about touching me, I will kill you.”

Strike 2

We left the hotel at dawn to make the final drive to the Grand Canyon. We, along with several thousand other people, were there. I told Michael to wait a minute, I pushed my way through the throngs to look down into the Canyon, turned around, and we hopped back into the car and headed back to Williams. This time, we found a hotel room with air conditioning, slept until early evening then hit the desert at night. It was still well over 100 degrees but we didn’t have the hot sun beating down on us. It was a lonely and scary drive. 

We limped into San Bernardino around 2:00AM. The first hotel we found was just off the highway. We said we wanted to book a room. The reply, “How long?” We, oh so very young, said that we would be out about 8:30AM. We paid but did not sleep well as other hotel doors slammed about every 20 minutes! Yes, it was that kind of hotel. Years later, I was telling my parents this whole story and they started to laugh. They also had stayed at this same hotel!

Strike 3

At least it wasn’t three strikes and I was out of there! But, it was a long drive home. Did I make a mistake? Was this horrible honeymoon a sign? I remember glancing over at Michael driving the last few miles to our little rented home and I knew that this was right. I knew we would spend our lives together. But man, what a horrible honeymoon!

Saturday, November 13, 2010

The Elegance of the Hedgehog


That, dear reader, is the new book selection for our book club. Our book club, whose main focus is wine and food and talk of the actual book is minimal. But, I have been exposed to books I would never have chosen. That is a good thing.

The book begins with a young girl who is contemplating suicide on her 13th birthday. Yikes! It is a translation from the original French and is really rich in language.

So, once again, I am reading a book about death, something I have so avoided since the diagnosis. Not an easy read for me.

I am really not enjoying it. I am going to finish it with hopes that it grows on me. 

Friday, November 12, 2010

Making Christmas Plans




Christmas is coming,
 The geese are getting fat,
 Please put a penny 
In the old man's hat.
If you haven't got a penny,
 A ha'penny will do, 
If you haven't got a ha'penny,
Then God bless you.
We are already planning Christmas lunch and dinner. Nine people will be sitting around the table this year. William and Kimberly will be here and have agreed to help. It is a tradition in our family to feature food from different countries - foods that grandmas are cooking in their kitchens. This year, we have chosen to feature specialities from France.

I think the main course will be a Beef Bourguignon because it is so good and can be prepared a few days ahead. We are planning to serve escargot, a charcuterie and other authentic foods from different regions for lunch. The charcuterie will feature French cheeses, marinated vegetables, terrines, pates, artisan salumi, quiches, French bread and other authentic goodies. We are excited about choosing good French wines to serve all day. We also have a domestic Absinthe for those brave enough to try it. Green fairies be damned!

It gives me something fun to think about and plan.

As Christmas quickly approaches, it is the yearly reminder for me that my time is short. I always wonder if it will be my last. It is a another marker in time. It is also very bittersweet as I love it so much but it makes me sad because I know I won’t be here for as long as I wish.

I am really going to enjoy being with everyone this year and am so grateful for a fairly healthful year. Also, the time of year is coming to pause, to review the year, to decide what I did well and what I need to work on, to set my goals for next year and to keep moving. Forward.

Thursday, November 11, 2010

Family Medical History

My parents would sometimes talk about questions they wish they could ask their parent but now must remain forever unanswered. They wish they had thought of them before their parents died. Things like why my dad was born in Mason City, Iowa while his four other siblings were born in Chicago. What were they doing in Iowa?

Mom wanted to know about her mother’s “broken arm” In high school, she was sent away for seven months from Chicago to the Carolinas to recover. Sounds so suspicious to us now. Does my mom have a half-sibling somewhere? A mystery.

My brother is having some health issues and his doctor asked for a full family medial history. Betty asked for my help. I wrote everything down from age and date of death to reasons of death to diseases and syndromes for our parents, siblings, aunts, uncles and grandparents. I sent the document to my mom to add things I had missed. I hit about 95%. I not only sent the completed list to Chip, it was also sent to Lee, Shelley and William.

This may be needed information for not only us but for future generations.

I am so grateful that my mom is alive and able to help with this important information.

Last week I phone Michael’s mom and told her about what we had complied. I asked if she would be so kind to do the same for her side of the family. I am so grateful she, too is alive and able to share this all-important information.

William will have his full family medical histories going back over 100 years.

Please, please ask your older relatives for this important information and write it down. Do it now before it is too late.

Wednesday, November 10, 2010

Jobs

 It finally happened. Michael is working full time again for the first time in several years. I am joyous.

The first week was a hard adjustment. Suddenly, he had to be in bed earlier, head out the door earlier, deal with commuter traffic and be accountable to someone. I made sure to have a nice dinner waiting for him every night. I love that he still gets up early enough to make us coffee and breakfast. Love that man.

He mentioned this morning that this was his favorite part of his day: us together in the morning having coffee and discovering all the news that happened while we were asleep.

The first weekend, we planned nothing except naps. It was raining but that did not stop us from going out for lunch. The weekend was about recovering and resting to get ready for the next week.

I am also grateful that my 60-year old sister just landed a fabulous job just over a mile from her home. It is a perfect job for her, well paying and challenging. She has all the skills to work in this job for many years.

Things are looking up.

Tuesday, November 9, 2010

Time Marker



Yes, it is my birthday today. I am 57-years old as of 5:05PM. 
I have not been looking forward to this specific year since I was young.

My maternal grandmother was a Scorpio. It is believed that when a Scorpio dies, another is born in the family within a year before after the death. I was born five months before she died. I have always felt an odd connection to her.

Grandma had horrible allergies to almost everything from food to the environment to medicines. She was very allergic to penicillin. She was not feeling well and a doctor gave her a lethal shot of penicillin. It killed her quickly. 
She was 57-years old.

When I was younger, I used to think that she was old anyway. Shocking! I am now the age she was when she died. So young! I asked my mom if she thought a lot about her mom when she turned fifty-seven. She said she thought about her all year. 
I think I will, too.

Monday, November 8, 2010

Just a Bump


Photo of a 1994 840 BMW
Ours has different paint, tires and rims.

I had written a blog on 6.28.10 about trying to make a curmudgeonly elderly man smile at the other rehab. We have since developed a lovely relationship. His wife died about a year ago and he just recently moved into an independent living facility, which he really likes.

So, he felt horrible last Wednesday when he backed into my car in the new parking lot at the new rehab center.

My car. It is a rare car. It is a 1994 840 BMW – 8 cylinder automatic – which was painted the Porsche Millennium color in 2002. It changes color in the sun. It sometimes looks black or green or brown or purple. It is interesting. Replacement parts are expensive and hard to come by. It is Michael’s baby.

When his insurance company’s agent phoned, she asked the make and model of my car. She commented that it was old then asked if it had over 100,000 miles on it. She was insinuating that this dent might total the car. She had no idea of its value. The car originally sold for just over $100,000 in 1994, the last year it was made.

Michael arranged for a shop he trusts to write an estimate so the insurance company would see the cost of the paint - $600.00 a quart ordered from Germany – was included in the costs to repair the car. The estimate was a surprising high $4,100.

I arranged to meet the inspector from the insurance company on Friday so he could take photos of the damages and the car in general. We met in the parking lot where the accident happened. He drove up in a BMW. It was a good sign.

What a surprise I had when he began to haul out a wheelchair. As we got to know each other, he mentioned that there had been an incident over twenty years earlier. As we continued to talk, our philosophy – adjust and keep moving - were the same. We were kindred spirits. We totally bonded.

He took many photos of the car then said that he has been looking for this exact model for over two years. He was stunned how clean and perfect it was. I told him that Michael is nuts about keeping the cars in perfect condition. Always. He offered to buy it. I promised that I would keep his number and call when we are ready to sell.

So, even with a sort of bad incident of being hit and a pain to deal with plus the indignity of driving around in a dented car, I had a marvelous experience and connection with another human. I love when that happens.

Sunday, November 7, 2010

Lunch with Winnie

At the spur of the moment, I met Winnie, Baby Oliver and Natalie for lunch on Friday. We love a little cafe, which serves delicious fresh food.

Ethan has been working long hours and I think Natalie just needed a bit of a break. Winnie and I sat next to each other. She never stopped talking or thinking or asking questions or telling endless knock-knock jokes. I loved it.

At one point just as we all finished lunch, she sat near her mom and Oliver, who never took his eyes off of her. I told her that when she was sixteen, she and Oliver could drive the car over to visit me. Without her mom or dad! It was a whole new concept for her. Alone. Without an adult. "Tell me more about me at sixteen," she said. 

She began to get itchy so we took off. I had an idea. I told her that I would show her a secret garden. “Like in the book?” she asked. So we walked just a block away. One of the old Bed and Breakfast’s in town is a perfect venue for weddings. They have a great restaurant space which opens to a huge deck with a massive fire pit.

It you look very closely, at the very far end of the huge deck, a ramp is hardly noticeable. I had Winnie go first. It opened up to a huge expanse of grass lined by tons of flowering plants; a gazebo is permanently there for wedding ceremonies as well as a wooden swing and a cute table and chairs. She squealed with delight. (The photo is of the garden set up for a wedding but you can barely see the expanse of lawn and flowers. It shows probably only 1/4 of the garden.) She was totally enamored. She ran to the far corners. She smelled every flower. It was magic.

I love seeing the world through the eyes of an almost four-year old. It reminds me that magic and possibilities still exist.

Saturday, November 6, 2010

Energy Conservation for the Holidays

 Smell it? It is the new season. It is here.

Fall.

I love this time of year. I breathe much better in cool moist air than in a hot humid environment. I love the beautiful sweaters and jackets of the season. Wools. Nice.

Along with this, there is also a bit of concern about the upcoming holidays. It is a very busy time and a real chore to manage. The goal is to not overdo and become ill. It is about pacing ourselves and maybe even changing our traditions. Remember: adjust and keep moving forward. If you can’t go to midnight Mass because you will be wiped out the next few days, make the decision to not continue that tradition. It is better to have you well and present for the holiday than ill in bed.

So easy to say. So hard to do.

Many of us have the full support of our families but so many people do not. We sometimes are expected to keep all the balls in the air while our health is fading. People get angry – and scared – when there is change. They want everything to stay the same. Ignoring our illness.

As an ill person, it is okay to say “can’t.” Sorry, can’t make that special dinner before caroling this year. Can’t go to several parties this weekend. Can’t host a party. Can’t hike through the woods to fine a tree. Can’t.

Just can’t.

Have fun, party, see friends but make sure to build recovery time into the schedule.

Keep your eye on the goal: Make it to January healthy and ready for the New Year.


Friday, November 5, 2010

Neighborhood Hangout

Recently, I was walking through the mall and noticed a ton of kids just hanging out. It made me remember where our local neighborhood hangout was when we were kids. No, it wasn’t a soda shop or a park or a mall. It was a tree. It was an apple tree in the Klaren’s yard. That is where we hung out.

All the kids in the neighborhood would meet there. We would talk about everything from parents to homework to school to music to games. We would play Red Rover or SPUD or hide and seek or touch football under its branches. We would enjoy its fruit.

When visiting in 2007, we found the tree. It was still there though it was a lot smaller than I remembered.

I learned so much about people and life within its branches.

Where was your hangout?


Thursday, November 4, 2010

Sad News

One day last week, I got a rather frantic call from Christien from her new home in North Carolina. I couldn’t understand what she was saying so she had to repeat it twice.

Her father had died an hour earlier.

She had been unpacking with the movers when her stepmother phoned. Her father had a bout of indigestion the night before and was not feeling great. She went to the gym, took one look at him when she got returned home then called 911. While they were doing tests, he bled out. He had a ruptured aorta.
He was 86-years old and a renown and highly respected attorney. What a shock.

Gratefully, they had a good relationship and she had spoken to him recently. He had been so happy about her move to be closer to him and to the rest of the family. Her brother had just spent the weekend with him.

She was in shock.

I heard from her a few days ago while she was driving home from her father’s house where she was helping make all the funeral arrangements with her step-mom. She was still in shock. She was tired but just wanted to get home to just unpack her clothes then drive back for the funeral.

The funeral was Monday. She sent a quick e-mail that everything went well and we made plans to talk when she gets home. She did mention that she was very pleased that the military not only presented a flag to her step-mother but presented another to her brother. It meant a lot to her.

My heart aches for her.

Wednesday, November 3, 2010

Prednisone, Thyroid and Weight

What a day. I had an appointment with my endocrinologist on Monday who was a former parent from the school where I got sick. He has been monitoring my Hoshimoto’s Disease and has the medication tweaked just perfectly. It was great to see him and to be updated on the music and other education of his two children, who I adored. Great kids. Great mom and dad.

He ordered blood tests: thyroid, vitamin D, blood calcium. He also ordered my fourth bone density test. People who take prednisone long-term should know that one big side effect is massive bone loss. The Boniva or Fosimax slows down the bone loss and taking calcium everyday helps rebuild that loss.

I also asked his advice. I just can’t lose the 25 pounds I want to lose. He told me that with the dosage and longevity of the prednisone, I will have a very difficult time losing any weight. Rather depressing. He wrote orders to have the Weight Management Group help design a diet or even tweak the one I am on. We eat such small meals now and I do a hard work out in the hospital gyms five days a week, I think I need to fine tune what I am eating. I need help.

I made an appointment to begin the process just before Christmas. I will meet with a nutritionist then a week or two later with a doctor in the group.

While I was waiting for my number to be announced for the blood draw, a woman plopped down next to me and asked if I would be interested in a study regarding brain tumors. They wanted DNA and blood samples. They are looking for a control group. As this university truly saved my life, I will give them anything for research. Anything.

Well, after the blood draw and I answered all of her questions for the study, we started talking. She had written a book about inspirational people who she interviewed around the country. She is going to mail a copy to me. I gave her the address to this blog.

We hugged before I headed to the car for the long drive home.