Nice weekend and we even saw a bit of sunshine yesterday! We had not heard from our son since returning from Europe so we texted yesterday. He replied an hour later that he was just getting off a plane from a couple of US concerts. I think we will hear from him today or tomorrow. I want to nail down our plans to spend time together in Palm Springs just after Christmas so I can make the reservations. We also love to hear about the concerts and any exciting food experiences during his travels.
The new sofa is great but I think we have a problem. We noticed that it is at least 1.5" lower in the center than at the ends, which makes the foot rests bump. A problem with the center support. I will be phoning them this morning.
Mom will be itching to get out and about today. With sunglasses to hide her surgery stitches, we will run some errands and go to lunch together. I want to make sure the surgery site looks good, with no swelling or redness.
Rehearsal tonight with the Irish Fiddling group. This is just the start of a very busy week with a Back-To-School lunch with Natalie, Winnie and Oliver; a two-day visit of Lee and Jeff; rehab class and finally the two Irish Fiddling gigs. Big week!
Monday, July 31, 2017
Sunday, July 30, 2017
Hello, Hello!
It was a wild day for me! While the sofa was coming through the front door, my sister phoned. They want to escape the obsessive heat next week coming down to the coast next Thursday through Saturday. Yikes! Thursday is rehab class, which I will need to cancel. Friday is always spent with mom and she has an appointment with a lawyer to make changes to her will this coming week. Lee said we would all go and have lunch together. Mom was not amused when I phoned to warn her about their visit. She is not allowed to wear any eye makeup for another week because of the surgery and she will still have stitches and swelling. Not how she wants to be seen in public. To continue, Friday night, the Irish Fiddling group is playing a gig at the organic market, which is not a venue to sit for two hours and listen. Michael said he would drop me off, let them listen to a song or two then take them for fish tacos and cheesy garlic bread topped with fresh crab. So stinkin' good.
Earlier in the morning, I had phoned mom to see how she slept through the night after the surgery. Then, I phone again about Lee's visit. While on the phone with Christien, mom phoned me. With gel in her eyes, she tried to pay her Comcast bill and messed up the password. I told her I would take care of it all on Monday.
Christien. After her mom died, it has been very difficult. Her brother is really over his head as executor, defensive anytime she asks a question and it turns out her financial situation was not what they were told it was for most of their lives. She was a most difficult woman and an even more difficult mother. So yesterday, Christien phoned several times with updates of her latest communications with her brother and planning her next steps. Then, Michael phoned while I was on the phone with Christien.
I think a phone was attached to my ear most of the day!
Michael did arrive home with groceries for the week as if by magic. Love that guy!
Friday, July 28, 2017
Goodbye
It was warm, the church was glorious and there were about 200 people at the "sending his soul to God" ceremony for George last evening. We had never been inside a Greek Orthodox church before and were stunned at its glorious golden panels, tiles and painting everywhere. It felt like we were in a truly holy spot on earth.
So many of the retired Teamsters I met at Sherman's funeral were there to say goodbye to their friend George. We all were stunned at his sudden death. His wife was holding up but really was in a fog of shock. We learned that George had recovered enough to be sent home from the hospital but died shortly afterward.
The actual funeral is this morning but mom will probably still be in surgery. We said our goodbyes last night, Michael needed a Kleenex to get through the ceremony and we spoke with his children and grandchildren. Comments made by several of the family members was that George was never the same after Sherman died. So very sad.
Mom's surgery begins at 8:30 this morning but I don't know if she will be up to going anywhere afterward or if she will just want to get home. I will follow her lead.
Tomorrow, our new sofa is scheduled for delivery! Our work this afternoon will be to remove the old chairs, move some tables and prepare the area. So exciting!
The weather should be lovely this weekend, the gardens look pretty good so I plan to maybe take a walk along the ocean for the first time in awhile. My numbers were really good during rehab class yesterday so it gives me a bit of confidence to strike out on my own.
So many of the retired Teamsters I met at Sherman's funeral were there to say goodbye to their friend George. We all were stunned at his sudden death. His wife was holding up but really was in a fog of shock. We learned that George had recovered enough to be sent home from the hospital but died shortly afterward.
The actual funeral is this morning but mom will probably still be in surgery. We said our goodbyes last night, Michael needed a Kleenex to get through the ceremony and we spoke with his children and grandchildren. Comments made by several of the family members was that George was never the same after Sherman died. So very sad.
Mom's surgery begins at 8:30 this morning but I don't know if she will be up to going anywhere afterward or if she will just want to get home. I will follow her lead.
Tomorrow, our new sofa is scheduled for delivery! Our work this afternoon will be to remove the old chairs, move some tables and prepare the area. So exciting!
The weather should be lovely this weekend, the gardens look pretty good so I plan to maybe take a walk along the ocean for the first time in awhile. My numbers were really good during rehab class yesterday so it gives me a bit of confidence to strike out on my own.
Thursday, July 27, 2017
A Day Together
George's visitation is tonight followed by the funeral tomorrow. With mom's surgery time not yet known, we want to go together tonight then Michael may have to attend the funeral alone. Sherman's daughter phoned with the information yesterday and we were able to chat. She and her sister are moving to the central valley to be closer to their cousins and to take advantage of the dramatically cheaper rents. They are struggling to clean out the house but must be out within a month.
Another death. Another funeral. It has been a rough year.
Michael and I dropped British Don's car off at the dealership early yesterday morning then I found a fantastic little breakfast place online. The reviews were excellent and it sounded like our kind of place. Nothing fancy. Good food. Lots of local support.
It did not disappoint! The ambiance was relaxed and featured mostly space aliens and sea creatures but the food portions were huge with a specialty of omelets. We passed on that but Michael had their breakfast burrito and a pancake (!). He didn't finish either but he kept making the yummy sound so I know he really liked it! I had their special of an egg, sausage, potatoes and toast. I ate some of the eggs and a sausage. The potatoes are going to be on Michael's dinner plate this evening and the sausages will be my breakfast this morning.
We tried to eat slowly and take our time as we needed to have his old phone wiped clean and needed the advice at an Apple Store or AT&T Store and they didn't open for another hour. We drove to The Avenue and discovered that the Apple Store was closed for renovation but found an AT&T Store several blocks away. A good walk. After just a five minute wait, the tech wiped it clean, figured out why the password didn't work and made the magic happen.
Hopping into the car, we worked our way to where Michael used to work and gave this old phone to his friend, who was in desperate need of a newer phone. I had not seen him in many years so it was good to spend a bit of time with him.
Home, I noticed Michael nodding off on the sofa. It was good to see him relaxed, a rare event. Later in the afternoon, the energy returned and he tackled the huge plant trimming project in one area of the front garden. He filled another two garden recycling containers and there will be a few more to be filled in the next couple of weeks. He was one hungry boy for dinner.
We laughed a lot. We talked a lot. It was such a nice day together.
Another death. Another funeral. It has been a rough year.
Michael and I dropped British Don's car off at the dealership early yesterday morning then I found a fantastic little breakfast place online. The reviews were excellent and it sounded like our kind of place. Nothing fancy. Good food. Lots of local support.
It did not disappoint! The ambiance was relaxed and featured mostly space aliens and sea creatures but the food portions were huge with a specialty of omelets. We passed on that but Michael had their breakfast burrito and a pancake (!). He didn't finish either but he kept making the yummy sound so I know he really liked it! I had their special of an egg, sausage, potatoes and toast. I ate some of the eggs and a sausage. The potatoes are going to be on Michael's dinner plate this evening and the sausages will be my breakfast this morning.
We tried to eat slowly and take our time as we needed to have his old phone wiped clean and needed the advice at an Apple Store or AT&T Store and they didn't open for another hour. We drove to The Avenue and discovered that the Apple Store was closed for renovation but found an AT&T Store several blocks away. A good walk. After just a five minute wait, the tech wiped it clean, figured out why the password didn't work and made the magic happen.
Hopping into the car, we worked our way to where Michael used to work and gave this old phone to his friend, who was in desperate need of a newer phone. I had not seen him in many years so it was good to spend a bit of time with him.
Home, I noticed Michael nodding off on the sofa. It was good to see him relaxed, a rare event. Later in the afternoon, the energy returned and he tackled the huge plant trimming project in one area of the front garden. He filled another two garden recycling containers and there will be a few more to be filled in the next couple of weeks. He was one hungry boy for dinner.
We laughed a lot. We talked a lot. It was such a nice day together.
Wednesday, July 26, 2017
Can I Blame Leo Rising?
Rehab class felt fantastic and I did my full workout but it was a crazy day. Could be due to Leo rising, according to my car pool buddy, Jeannie. On the way to rehab, I was almost hit two times then it went sideways from there. I walked to the far end of the hospital to the front desk where one can make appointments. It was closed. Permanently. I stopped at the volunteer desk and they directed me to the second floor.
Second Floor, first stop was to have the X-ray of my finger sent to my university hospital's Rheumatology clinic. There was a line, one person working the counter and a lovely older woman in front of me. She reminded me of my mom as she reached up to rest her hand on the sign. Her back looked painful and she was bending forward. I suggested that she sit down and that I would let her know when the counter person was ready for her. She thanked me and sat.
After she was called, another counter person arrived. She called me over. When I told her what I needed, she said that she just got back from a break and it would take a few minutes for her to get her computer started. Okay. She told me to sit down to wait. Finally, she called me forward again and asked what I needed, they could not send the X-ray electronically but with a CD, which would take her 10-15 minutes to produce while she helped other people in line. Okay. Did I mention all this was said with a surly attitude and not a smile anywhere in the vicinity?
I said that I needed to schedule a Bone Density Test and would be back.
Second Floor, second stop was all the way at the other end of the hospital. Arriving, I was told that they could not make any appointments. All appointments now must be made by phone. Okay. They were kind and I felt sort of sorry that they had to spend a lot of time explaining why they couldn't make appointments, which took more time than actually making an appointment.
Back to radiology.
I sat in view of the woman, who was now making my CD. It was ready, she called me forward to sign some papers and handed me the CD. I looked her straight in the eye and with absolutely no hint of irony I said, "Thank you so much for being so kind. I appreciate it." She was rather taken aback and I think I saw a bit, just a bit of a smile wanting to bloom from her lips.
Now to the rehab class, all the way at the other end of the hospital.
The only other issue was trying to get out the parking lot after the class. It was blocked by such a mess of cars that I wondered if we would ever get home. Fortunately, we finally made it through, drove home without being an accident and Michael and I sat in the garden talking about our day. He's stories were even better than mine!
Second Floor, first stop was to have the X-ray of my finger sent to my university hospital's Rheumatology clinic. There was a line, one person working the counter and a lovely older woman in front of me. She reminded me of my mom as she reached up to rest her hand on the sign. Her back looked painful and she was bending forward. I suggested that she sit down and that I would let her know when the counter person was ready for her. She thanked me and sat.
After she was called, another counter person arrived. She called me over. When I told her what I needed, she said that she just got back from a break and it would take a few minutes for her to get her computer started. Okay. She told me to sit down to wait. Finally, she called me forward again and asked what I needed, they could not send the X-ray electronically but with a CD, which would take her 10-15 minutes to produce while she helped other people in line. Okay. Did I mention all this was said with a surly attitude and not a smile anywhere in the vicinity?
I said that I needed to schedule a Bone Density Test and would be back.
Second Floor, second stop was all the way at the other end of the hospital. Arriving, I was told that they could not make any appointments. All appointments now must be made by phone. Okay. They were kind and I felt sort of sorry that they had to spend a lot of time explaining why they couldn't make appointments, which took more time than actually making an appointment.
Back to radiology.
I sat in view of the woman, who was now making my CD. It was ready, she called me forward to sign some papers and handed me the CD. I looked her straight in the eye and with absolutely no hint of irony I said, "Thank you so much for being so kind. I appreciate it." She was rather taken aback and I think I saw a bit, just a bit of a smile wanting to bloom from her lips.
Now to the rehab class, all the way at the other end of the hospital.
The only other issue was trying to get out the parking lot after the class. It was blocked by such a mess of cars that I wondered if we would ever get home. Fortunately, we finally made it through, drove home without being an accident and Michael and I sat in the garden talking about our day. He's stories were even better than mine!
Tuesday, July 25, 2017
Preparing
We got word that George passed away. He was Sherman's best friend and both Michael and I knew him well. I think he was only 77-years old, took over Sherman's UPS route after he retired and was an owner of many Model T cars. A kind and generous man.
Just over a week ago, he had a stroke that left him unable to speak or move half of his body. A feeding tube was introduced a few days ago but the prognosis wasn't good. When we were told he died Sunday night, we both thought it was probably a relief that he didn't have to live in this vegetative state, unable to respond to anything.
With Sherman dying just a few months ago, this was a most unexpected death.
A sudden death like this is often hard for the family as there was no time for goodbyes. Having this disease, I am often grateful that I have had years to say everything I wanted people to hear. My relationships are all settled. I could die tomorrow and it would be okay.
Recently, I found myself preparing Michael for my death. Sounds odd, I know, but I realized it while showing him how to snap the stems off the dead flowers of the geraniums in the garden. I was also explaining why a Japanese Maple would not be a good choice to plant along the windy side of the house and showed him why I planted the two where they live protected from the ocean breezes.
He used to drive me nuts by telling me when he ran out of something rather than giving me a few days notice. He is now trained to actually write on the grocery list when he opens a new item. Always have an extra on hand is my motto. He knows how to do the laundry as well as fold it and put it away. We are still working on Dishwasher 101! Don't even ask about making the bed as he is still in the pre-caring-about-it phase. He knows how to turn on the oven! He knows to open the mail and immediately phone if there is a problem with any bill, insurance or bank.
He can actually food shop all by himself. This was a huge step that came after shopping with me for all the weeks of my fractured knee. He now has the confidence to do it alone.
Instead of phoning for him, I have him dealing with all the new paperwork and phone calls regarding his upcoming entree to Medicare and Supplemental insurance. Kaiser needed to be cancelled as of a certain date. We have had to deal with the Supplemental several times already. In our 43 years of marriage, I have always taken care of this stuff. I realize that I have not been doing him any favors. He needs to know how to write the checks, pay the bills and actually take them to the post office. Follow through. Not always his strongest suit. Best intentions...
But, he is learning. He has embraced the gardening. No, he doesn't approach it the way I have for years but he does it his way, which is just fine with me.
I am teaching him to function without me.
Just over a week ago, he had a stroke that left him unable to speak or move half of his body. A feeding tube was introduced a few days ago but the prognosis wasn't good. When we were told he died Sunday night, we both thought it was probably a relief that he didn't have to live in this vegetative state, unable to respond to anything.
With Sherman dying just a few months ago, this was a most unexpected death.
A sudden death like this is often hard for the family as there was no time for goodbyes. Having this disease, I am often grateful that I have had years to say everything I wanted people to hear. My relationships are all settled. I could die tomorrow and it would be okay.
Recently, I found myself preparing Michael for my death. Sounds odd, I know, but I realized it while showing him how to snap the stems off the dead flowers of the geraniums in the garden. I was also explaining why a Japanese Maple would not be a good choice to plant along the windy side of the house and showed him why I planted the two where they live protected from the ocean breezes.
He used to drive me nuts by telling me when he ran out of something rather than giving me a few days notice. He is now trained to actually write on the grocery list when he opens a new item. Always have an extra on hand is my motto. He knows how to do the laundry as well as fold it and put it away. We are still working on Dishwasher 101! Don't even ask about making the bed as he is still in the pre-caring-about-it phase. He knows how to turn on the oven! He knows to open the mail and immediately phone if there is a problem with any bill, insurance or bank.
He can actually food shop all by himself. This was a huge step that came after shopping with me for all the weeks of my fractured knee. He now has the confidence to do it alone.
Instead of phoning for him, I have him dealing with all the new paperwork and phone calls regarding his upcoming entree to Medicare and Supplemental insurance. Kaiser needed to be cancelled as of a certain date. We have had to deal with the Supplemental several times already. In our 43 years of marriage, I have always taken care of this stuff. I realize that I have not been doing him any favors. He needs to know how to write the checks, pay the bills and actually take them to the post office. Follow through. Not always his strongest suit. Best intentions...
But, he is learning. He has embraced the gardening. No, he doesn't approach it the way I have for years but he does it his way, which is just fine with me.
I am teaching him to function without me.
Monday, July 24, 2017
Working Husband
Michael worked all day yesterday. He continued to hack away at one section of the yards, filled up another two recycling containers, cut the grass then washed three cars. I was exhausted watching him! I watered a bit then went for a walk with our neighbor Natalie on her new knees. She is doing amazingly well but it has not been easy. What is even more shocking is that she is heading back to work in two weeks, with or without canes. It was great to chat and walk and I hung out at her house for a bit afterward. I offered to walk any afternoon during the week, if she wants a walking partner. Back home, I watered the rest of the yard. One day soon, I hope to be able to kneel and weed my flower gardens, which did not get planted with annuals this year.
It was a rough night. Around 12:30AM, I woke up with a start with the name of a person in my rehab class on my brain and a clear feeling that he had just died. When I go to class on Tuesday, I will ask if they have heard from him lately, as he has not been in class in quite some time. I hope I am wrong.
I tossed and turned and tried to settle in until I finally drifted off at 3:30AM. This morning, Mom has an appointment at Costco to replace the little plastic tubing in her hearing aids. While there, I will buy some Peet's coffee beans and vitamins. I guarantee that we will enjoy a lunch somewhere and talk non-stop while together. Such fun.
It was a rough night. Around 12:30AM, I woke up with a start with the name of a person in my rehab class on my brain and a clear feeling that he had just died. When I go to class on Tuesday, I will ask if they have heard from him lately, as he has not been in class in quite some time. I hope I am wrong.
I tossed and turned and tried to settle in until I finally drifted off at 3:30AM. This morning, Mom has an appointment at Costco to replace the little plastic tubing in her hearing aids. While there, I will buy some Peet's coffee beans and vitamins. I guarantee that we will enjoy a lunch somewhere and talk non-stop while together. Such fun.
Sunday, July 23, 2017
Into the Gardens
Gout or not gout? That is the question! I asked Dr. M., my endocrinologist to take a look at the lab reports and the bump on my finger for his opinion. After reviewing everything with a promise that I would not share his opinion with other doctors, he said that he does not believe I have gout. I agree with him.
On Friday, before seeing Dr. M., I dropped off the referral to the rheumatology clinic so we will see what they have to say about Gout-gate.
It happened again yesterday morning. I dropped off to sleep for a couple of hours in the morning then did really nothing for the rest of the day, except wash the sheets. We need to work in the gardens this morning and I will bet that Michael will take me for a quick lunch somewhere. There was a wet fog when we woke up this morning but the sun is beginning to peak through right now.
The week ahead is a return to my schedule of rehab and my mom and rehearsals and gigs. I try to focus on one day at a time and put my full focus on it.
But for today, I hope to work hard in the yards, take a shower, hang with Michael and take a walk with our neighbor Natalie on her newly replaced knees. Sounds perfect!
On Friday, before seeing Dr. M., I dropped off the referral to the rheumatology clinic so we will see what they have to say about Gout-gate.
It happened again yesterday morning. I dropped off to sleep for a couple of hours in the morning then did really nothing for the rest of the day, except wash the sheets. We need to work in the gardens this morning and I will bet that Michael will take me for a quick lunch somewhere. There was a wet fog when we woke up this morning but the sun is beginning to peak through right now.
The week ahead is a return to my schedule of rehab and my mom and rehearsals and gigs. I try to focus on one day at a time and put my full focus on it.
But for today, I hope to work hard in the yards, take a shower, hang with Michael and take a walk with our neighbor Natalie on her newly replaced knees. Sounds perfect!
Friday, July 21, 2017
Thyroid Check
It's very early and I am trying to get out of the house to spend the morning with my mom. Since I am seeing Dr. M., my endocrinologist this afternoon, I want to spend as much time with mom as possible. Dr. M. was a parent at the school where I got sick, his wife was a friend of mine who told her husband about my issues with trying to regulate my Hashimoto's thyroid disease and he offered to see me as a patient. He was fantastic. He was also one of the first doctors doing research on the issues around Vitamin D and had me taking supplements years before I read about it in the press. When I realized that my local doctor was not treating my breathing problems correctly and refused to send me to a pulmonologist, I phoned him for help. After listening to my list of symptoms, he said it sounded like an interstitial lung disease and wrote the referral to the clinic.
He saved my life.
Years later, I was concerned that I was not able to lose weight to get under 30 BMI for lung transplants. Even though he told me that I must be eating more than I realized, I knew that I was eating only 1,000 calories per day yet was still gaining weight. I asked him for a referral to the Weight Management Clinic where, as we all know, I lost over 70 pounds with them and am 110 pounds lighter than my highest weight. He gladly wrote the referral to that clinic.
He saved my life again.
When we are together during our annual appointment, we get the business out of the way then I ask about his family. His children were in the instrumental program at the school and one has become a respected artist. He so wanted him to be a doctor but has fully accepted that this child has chosen another path. His daughter will be running the world soon.
The appointment is like a visit with an old friend who cares for me. The best kind of doctor to have on my side.
He saved my life.
Years later, I was concerned that I was not able to lose weight to get under 30 BMI for lung transplants. Even though he told me that I must be eating more than I realized, I knew that I was eating only 1,000 calories per day yet was still gaining weight. I asked him for a referral to the Weight Management Clinic where, as we all know, I lost over 70 pounds with them and am 110 pounds lighter than my highest weight. He gladly wrote the referral to that clinic.
He saved my life again.
When we are together during our annual appointment, we get the business out of the way then I ask about his family. His children were in the instrumental program at the school and one has become a respected artist. He so wanted him to be a doctor but has fully accepted that this child has chosen another path. His daughter will be running the world soon.
The appointment is like a visit with an old friend who cares for me. The best kind of doctor to have on my side.
Thursday, July 20, 2017
Almost Normal
After wishing my wonderful Mother-In-Law a happy birthday yesterday morning, I climbed back into bed for a few minutes. Well, it turned into 2.5 hours of the best sleep. I must have really needed it! With only the dentist on my schedule, I thought I might have a problem sleeping last night but..nope.
All of the gigs and the past two frantic weeks must have really taken its toll on me. I feel full of energy this morning, have an appointment with our investment company trying to track down some lost stocks before I head over the pass to food shop. Alone.
My knee is no problem but the pain from the gout in my other foot has been difficult until recently. Going to the dentist, I actually wore regular sandals with a small wedge heel for the first time since the fractured knee incident. No pain and no pain this morning.
We also noticed that the horrible, deep coughing whenever I exerted any energy was gone. No more wheezing, too.
I am beginning to feel like I am getting my life back to normal. That means I must kick up the exercise. It will be a workout to buy the groceries, haul them to the car, pack them into the trunk and unload when I get home. Recently, Michael had been with me to help but I think I can do this alone now.
Our neighbor Natalie had two knee replacements about two weeks ago. It was so much more painful than she had anticipated but she is now up and walking and plans to be back at work as a professor in a college RN program in a couple of weeks. I offered to walk the neighborhood with her when her husband was unavailable and we now plan to meet several times this weekend. Good for her and good for me, too! She has been housebound so I am sure she is going to enjoy a chat while we walk.
All of the gigs and the past two frantic weeks must have really taken its toll on me. I feel full of energy this morning, have an appointment with our investment company trying to track down some lost stocks before I head over the pass to food shop. Alone.
My knee is no problem but the pain from the gout in my other foot has been difficult until recently. Going to the dentist, I actually wore regular sandals with a small wedge heel for the first time since the fractured knee incident. No pain and no pain this morning.
We also noticed that the horrible, deep coughing whenever I exerted any energy was gone. No more wheezing, too.
I am beginning to feel like I am getting my life back to normal. That means I must kick up the exercise. It will be a workout to buy the groceries, haul them to the car, pack them into the trunk and unload when I get home. Recently, Michael had been with me to help but I think I can do this alone now.
Our neighbor Natalie had two knee replacements about two weeks ago. It was so much more painful than she had anticipated but she is now up and walking and plans to be back at work as a professor in a college RN program in a couple of weeks. I offered to walk the neighborhood with her when her husband was unavailable and we now plan to meet several times this weekend. Good for her and good for me, too! She has been housebound so I am sure she is going to enjoy a chat while we walk.
Wednesday, July 19, 2017
Reflections
After looking so forward to having a day to myself with no errands other than a bit of shopping for tops to wear for gigs, I found I got bored! It was rather a surprise! I did end up reading most of the afternoon but it was foggy and cold until 4:30 so I didn't sit in the garden.
It was fun to shop by myself, I found two tops for a total of $23.00 (very good sales) but made it home for lunch.
Today, I need to run two errands in town before my dentist appointment this afternoon. That is it. That is all that is on the calendar.
On reflection, I love being with my mom twice a week, rehab classes twice a week, visits to the other gym twice a week and yard work once a week. I love preparing the menus and food shopping each week. I love performing with the orchestra and the Irish Fiddling group. I love my busy life and having this week as almost a time-out makes me realize how full my life is and how I am still functioning well. I may not be able to do everything I used to do. I may not be able to do a few things anymore but I am still plowing ahead and keep trying.
More reflections on Hypersensitivity Pneumonitis. It invaded my body late 2002, I was misdiagnosed in 2004, the first appointment at my university hospital clinic was October 2004 and I was finally diagnosed via VAT biopsy on January 12, 2005. I have been fighting everyday since the diagnosis. How? Exercise. I found the more I did in my life, the more I could do in my life. I clawed back by first being able to walk to the mailbox then I added an additional activity of daily living as soon as I could. I pushed myself hard. If it was difficult today, maybe, just maybe, it will be a bit easier tomorrow. Before I knew it, I was being able to food shop alone and haul the groceries into the house. Suddenly, I didn't even have to think about preserving my energy but just did whatever I needed or wanted to do.
Exercise is the answer. Hard, consistent exercise. Join a Pulmonary Rehab class today.
It was fun to shop by myself, I found two tops for a total of $23.00 (very good sales) but made it home for lunch.
Today, I need to run two errands in town before my dentist appointment this afternoon. That is it. That is all that is on the calendar.
On reflection, I love being with my mom twice a week, rehab classes twice a week, visits to the other gym twice a week and yard work once a week. I love preparing the menus and food shopping each week. I love performing with the orchestra and the Irish Fiddling group. I love my busy life and having this week as almost a time-out makes me realize how full my life is and how I am still functioning well. I may not be able to do everything I used to do. I may not be able to do a few things anymore but I am still plowing ahead and keep trying.
More reflections on Hypersensitivity Pneumonitis. It invaded my body late 2002, I was misdiagnosed in 2004, the first appointment at my university hospital clinic was October 2004 and I was finally diagnosed via VAT biopsy on January 12, 2005. I have been fighting everyday since the diagnosis. How? Exercise. I found the more I did in my life, the more I could do in my life. I clawed back by first being able to walk to the mailbox then I added an additional activity of daily living as soon as I could. I pushed myself hard. If it was difficult today, maybe, just maybe, it will be a bit easier tomorrow. Before I knew it, I was being able to food shop alone and haul the groceries into the house. Suddenly, I didn't even have to think about preserving my energy but just did whatever I needed or wanted to do.
Exercise is the answer. Hard, consistent exercise. Join a Pulmonary Rehab class today.
Tuesday, July 18, 2017
Nightmare!
Around 3AM this morning, I was awake but beginning to doze.
Michael adjusted his sheets and turned over and continued his walk through
dreamland. As I begin to drift off, I suddenly felt something on my leg! It was
everyone's creepy nightmare! I screamed, hopped up, threw off the sheet and
blanket, turned on the light and there was a HUGE bug I had never seen before.
Larger than a cricket. Not a spider. Michael was now up, dead from sleep and
took the toilet paper I ran to get and grabbed it. My hero! It was huge! It
also took me awhile to settle back to sleep as I kept thinking I felt things
crawling on me!
Rehab class had been cancelled for me today because of mom's
Prolia shot this morning then the new sofa delivery. Funny how life happens and
things change. Mom's Prolia shot was cancelled and Living Spaces phoned last
night to let us know that the new couch didn't make it to the distribution
center and it would be another seven days before delivery.
I am totally free today.
With joy in my heart, I am going shopping for new tops to wear
when performing with the Irish Fiddling group. No time limits! No hurry! Time
to wander! Exciting!
There are only two weeks left before my fractured knee should be
totally healed. I notice that when I twist it getting into a car, I can still
feel a twinge of pain so I am trying to remember not to do that! My other gout
foot is so much better and I am no longer limping. I even walked all over the world yesterday in my new
wedge sandals and had no pain. It feels great to get my life back!
What a fun day ahead!
Monday, July 17, 2017
If the Shoe Fits...
I wore regular shoes yesterday. That is big news. Since the fractured knee and the sore gout toe on the other foot, my shoes have needed to be flat and loose. Not often attractive. The short wedge sandals I bought online this Spring were finally worn yesterday and I have no pain this morning. It was so exciting that I sat and crawled through a ton of shoe web sites and finally found a pair of black and white Oxfords for a really good price. They will look great with my white skinny jeans for Summer and my black cords for Winter. I was so worried that I was not going to be able to wear the small wedge sandals that I bought for the August wedding to match the dress but now I have hope!
Yesterday, we were up and out early to meet with a guy who needed Michael's advice. We drove right home afterward to beat the tourist traffic, did some stuff around the house then he took me to lunch at our favorite place just a few minutes north of us. The rest of the day, we napped, read in the garden, watched the British Formula 1 race and had a light salad for dinner. A very lovely Sunday. I feel rested and recovered from a crazy two weeks.
Mom has her shot in her eye this morning then we will have a bit of lunch. I need to do a small Safeway run on my way home this afternoon. It is absolutely gorgeous here and I hope to be home to enjoy it. Dinner will be a quick and easy "BLT Chicken" with a side of cole slaw. Simple. Easy. Perfect.
Happy Monday!
Yesterday, we were up and out early to meet with a guy who needed Michael's advice. We drove right home afterward to beat the tourist traffic, did some stuff around the house then he took me to lunch at our favorite place just a few minutes north of us. The rest of the day, we napped, read in the garden, watched the British Formula 1 race and had a light salad for dinner. A very lovely Sunday. I feel rested and recovered from a crazy two weeks.
Mom has her shot in her eye this morning then we will have a bit of lunch. I need to do a small Safeway run on my way home this afternoon. It is absolutely gorgeous here and I hope to be home to enjoy it. Dinner will be a quick and easy "BLT Chicken" with a side of cole slaw. Simple. Easy. Perfect.
Happy Monday!
Sunday, July 16, 2017
Recovering and Enjoying
Very little was accomplished yesterday as I tried to recover from the week. Friday's gig was outstanding, the place was packed, we were loose and playing well while lots of dancing was happening. Michael stayed and enjoyed it all. Even though I was tired Saturday morning, our house was picked up yesterday, the wash was done and put away and dinner was made but that was about it. Oh, a nap did happen!
I am looking forward to a bit of an escape this week. Since I car pool to rehab class with Jeannie, I don't have the opportunity to go over the pass early to do other errands or shopping. On Thursday, I am taking the day off to buy some clothes. I need tops to wear while playing with the Irish Fiddling group. Will be looking for light cotton tops with short sleeves that could flow over a pair of jeans or skirt. It has been so long since I spent time wandering a store all alone.
This week is going to be busy but not a lot of stress. Mom has her shot in her eye tomorrow and an appointment for her Prolia shot on Tuesday. While I am with her, Michael will be home waiting for our new sofa to be delivered. After her appointment, I will race home to switch places with him so he can run his errands, if the sofa has not arrived yet. With mom's Prolia shot and the sofa delivery, there will be no rehab class for me on Tuesday or Thursday!
It is early, we will be watching the British Formula 1 race later today but this morning, we are going over the pass for Michael to give some advise about some car to some guy. That's all I know! The tourist traffic coming home will be horrible so we are leaving very early and coming right back. I am going along just to spend some time with him. Maybe he will even take me to lunch!
In stressful news, the wedding in LA next month (Anna's son, William and Maddy's wedding) had a bit of drama these past few days. The wedding shop where the dress was bought and was being altered went bankrupt. Closed. Sorry. Maddy knew that her dress was with a seamstress being altered and hoped it was out of the store when it was closed. It took two days, Facebook and a lot of work but she just got word from the seamstress that it is in her hands and will be ready for the wedding. Deep sigh of relief!
In better news, our son is finishing up a long summer tour of a lot of festivals and concerts in Europe and will be home this week. There will be a couple of weeks off to wash clothes and run errands before they hit the road here in the US and Canada. With the other big group he has been with for eleven years, they played Madison Square Garden and huge venues. This group is playing the smaller venues of around 3,000 people. He is loving it. As a sound engineer, he can do so much more with the smaller places. We are hoping to see him when they play across the bay.
I am looking forward to a bit of an escape this week. Since I car pool to rehab class with Jeannie, I don't have the opportunity to go over the pass early to do other errands or shopping. On Thursday, I am taking the day off to buy some clothes. I need tops to wear while playing with the Irish Fiddling group. Will be looking for light cotton tops with short sleeves that could flow over a pair of jeans or skirt. It has been so long since I spent time wandering a store all alone.
This week is going to be busy but not a lot of stress. Mom has her shot in her eye tomorrow and an appointment for her Prolia shot on Tuesday. While I am with her, Michael will be home waiting for our new sofa to be delivered. After her appointment, I will race home to switch places with him so he can run his errands, if the sofa has not arrived yet. With mom's Prolia shot and the sofa delivery, there will be no rehab class for me on Tuesday or Thursday!
It is early, we will be watching the British Formula 1 race later today but this morning, we are going over the pass for Michael to give some advise about some car to some guy. That's all I know! The tourist traffic coming home will be horrible so we are leaving very early and coming right back. I am going along just to spend some time with him. Maybe he will even take me to lunch!
In stressful news, the wedding in LA next month (Anna's son, William and Maddy's wedding) had a bit of drama these past few days. The wedding shop where the dress was bought and was being altered went bankrupt. Closed. Sorry. Maddy knew that her dress was with a seamstress being altered and hoped it was out of the store when it was closed. It took two days, Facebook and a lot of work but she just got word from the seamstress that it is in her hands and will be ready for the wedding. Deep sigh of relief!
In better news, our son is finishing up a long summer tour of a lot of festivals and concerts in Europe and will be home this week. There will be a couple of weeks off to wash clothes and run errands before they hit the road here in the US and Canada. With the other big group he has been with for eleven years, they played Madison Square Garden and huge venues. This group is playing the smaller venues of around 3,000 people. He is loving it. As a sound engineer, he can do so much more with the smaller places. We are hoping to see him when they play across the bay.
Friday, July 14, 2017
Fresh Ginger
It was a rough morning yesterday but after the rehab class, I felt so much better. Always amazes me what exercise does to my body as it seems to crave it! It was a quiet evening and an early bedtime.
I am wheezing and coughing and I think it is because I have not fully recovered from the birthday party and gig on Wednesday. They took a lot out of me. Today, mom and I are just hanging out together and will probably run errands for her before a bit of lunch. Hopefully, I will make it home for a nap before the 7-9PM Irish Fiddling gig at the swanky wine place north of us. The weather is going to be gorgeous this weekend and I plan to read, nap and hang out in the gardens. And recover from a wild week.
Years ago, my friend Lois who was a biologist and did drug research, told me that ginger was very good for the lungs. Remembering this recently, I bought some crystallized ginger and some other ginger candies for Jeannie, my car pool to rehab class buddy. I found that if I kept a piece of crystallized ginger in my mouth, it would get hot and suddenly, I could breathe better. So, while waiting for class to begin, I offered a piece I bought for myself to another person in the class. She had been dealing with lots of COPD coughing, kept the piece is her mouth and did not cough during the entire class. She was shocked. I told her that if she could not find it anywhere, I would be happy to buy some at our organic market for her. Another thing Lois suggested was to very thinly slice the fresh ginger and steep it in boiling water for a tea. If you like ginger, you might want to give it a try.
I am wheezing and coughing and I think it is because I have not fully recovered from the birthday party and gig on Wednesday. They took a lot out of me. Today, mom and I are just hanging out together and will probably run errands for her before a bit of lunch. Hopefully, I will make it home for a nap before the 7-9PM Irish Fiddling gig at the swanky wine place north of us. The weather is going to be gorgeous this weekend and I plan to read, nap and hang out in the gardens. And recover from a wild week.
Years ago, my friend Lois who was a biologist and did drug research, told me that ginger was very good for the lungs. Remembering this recently, I bought some crystallized ginger and some other ginger candies for Jeannie, my car pool to rehab class buddy. I found that if I kept a piece of crystallized ginger in my mouth, it would get hot and suddenly, I could breathe better. So, while waiting for class to begin, I offered a piece I bought for myself to another person in the class. She had been dealing with lots of COPD coughing, kept the piece is her mouth and did not cough during the entire class. She was shocked. I told her that if she could not find it anywhere, I would be happy to buy some at our organic market for her. Another thing Lois suggested was to very thinly slice the fresh ginger and steep it in boiling water for a tea. If you like ginger, you might want to give it a try.
Thursday, July 13, 2017
Kid Day
I kept forgetting to get photos of the party yesterday but I did snap a few. Did I remember to take a photo while the kids blew out their candles? Nope. How about playing dueling hoses in the back yard? Sorry. But, here are a few.
Oliver said, "Sorry to tell you mom but her hot dogs in crescent rolls are better than yours!" I gave full credit to Winnie, who did all the hard work of rolling the mini hot dogs into the dough. I think he ate a million of them and was too full for lunch. He kept wandering into the back yard as they don't have a yard. We would find him on the swing just enjoying himself or exploring the hidden garden.Winnie loved the ribs and we all watched while I made the Bananas Foster, especially when we lit the rum to burn off the alcohol. Oliver loved his chocolate pudding with whipped cream.
After a few hours, they took off and I loaded the dishwasher and pulled the house back together.
Nap time. I think I had about 15-minutes of snoozing before Michael came home. We had the leftover ribs for dinner before playing the Irish Fiddling gig. It was a perfect night, not too busy or loud and we tried out a tweaked set list. We had lots of audience participation with dancing and even singing along. This gentleman asked to sing a Sea Chanty, which was very sweet. I took the photo below just before leaving at 8:45. The crowd had thinned. It was a fun night but I fell into bed and don't remember much after that!
Today, it is rehab class day but nothing else. We will see what kind of energy I have left in me. Hopefully, working out will make my body happy and prepare me for Friday night's gig at a new swanky wine shop. I plan to relax all weekend!
Wednesday, July 12, 2017
Party Day
Today is the day. Two birthday celebrations that I missed on their birthdays, Winnie and Oliver will get their special birthday luncheon and treats today! The table is set with presents and flowers. They are due at 10:30.
I phoned the assistant to the surgeon yesterday and she will be contacting the people for the test of the Barium Swallow that was not included in the testing last Friday. She also advised that others have reported back to her about the other test not available until September or October. As I mentioned that I am in the process for lung transplants and that my lungs are failing because of the acid reflux, she told me to call the lab and mention it and maybe they would be able to get me in sooner. No help from her for the surgeon and I have not heard from Dr. K.
Feeling frustrated.
Sad news in rehab. We received word that Ed died. He had been in rehab for about eight years and it was years ago that we realized that he was present when William was born as he was a partner with our pediatrician. He was a good man and I had been worried about him as he had been absent for about three weeks.
I actually had an excellent workout beginning with a recent record - with my fractured knee - of 2.5 MPH on the treadmill for eleven minutes. It felt great. My numbers were actually pretty good throughout the class. We will see if I can repeat it on Thursday then kick it up again next week.
Tuesday, July 11, 2017
Prep for Tomorrow
Everything went according to plan yesterday and was so perfect that Michael arrived home to haul the groceries into the house just minutes after I pulled into the driveway. I made a fantastic dinner of Mongolian Beef with broccoli on the side and even made Ham Cups (with eggs and goat cheese) for his next few days of breakfasts. I will admit falling asleep on the couch until he put me to bed at 7:30. I just can't seem to get enough sleep.
Early this morning, I need to finish preparing for the birthday party for Winnie and Oliver tomorrow with a Safeway run. Tablecloth and other items need ironing. Homemade Chocolate Pudding needs to be made. After the rehab class, I am going to phone Brenda at the surgeon's office to ask for help arranging the tests I need before anything can be repaired to stop the acid reflux from flowing into my lungs. Then, after dinner, there is an Irish Fiddling rehearsal. A full day.
My breathing isn't great. My fractured knee is better and I think it should be totally healed in three weeks. My other foot is still painful with what I think is probably gout.
Tomorrow should be totally fun. The ribs and fingerling potatoes will be baked, appetizers of Oliver's favorite mini hot dogs in crescent rolls will be served with homemade lemonade and Winnie will have her Bananas Foster over ice cream. Each child will also get an Amazon gift card so they can buy whatever they want. I promise some photos.
Early this morning, I need to finish preparing for the birthday party for Winnie and Oliver tomorrow with a Safeway run. Tablecloth and other items need ironing. Homemade Chocolate Pudding needs to be made. After the rehab class, I am going to phone Brenda at the surgeon's office to ask for help arranging the tests I need before anything can be repaired to stop the acid reflux from flowing into my lungs. Then, after dinner, there is an Irish Fiddling rehearsal. A full day.
My breathing isn't great. My fractured knee is better and I think it should be totally healed in three weeks. My other foot is still painful with what I think is probably gout.
Tomorrow should be totally fun. The ribs and fingerling potatoes will be baked, appetizers of Oliver's favorite mini hot dogs in crescent rolls will be served with homemade lemonade and Winnie will have her Bananas Foster over ice cream. Each child will also get an Amazon gift card so they can buy whatever they want. I promise some photos.
Monday, July 10, 2017
Another Wild Week Ahead
A new week. Last week was nuts and this week should be an equal challenge! Today, mom has arranged a check-up at a dealership for her Mini Cooper. It means an early morning drive deep into the Silicon Valley during rush hour traffic. We are bringing a deck of playing cards with us to spend the time waiting to continue our day. When the car is ready, we plan to drive back north to food shop, have bit of lunch, come home to cut the back lawn then water the pots.
The Irish Fiddlers have a rehearsal tomorrow evening, a gig at the brewery on Wednesday evening and a gig at a new venue at a Wine Shop on Friday evening. Very swanky Wine Shop. My fingers will have blisters by the end of the week.
But, the focus of the week will be on Wednesday when I will be hosting a birthday luncheon for my two favorite children - Winnie and Oliver. The baking will begin tomorrow and they are due here on Wednesday morning. They don't have a yard and love to water my plants. After lunch, I thought I would give each a hose and let them lose on the gardens. They somehow always end up getting soaked!
Yesterday, Michael and I attacked the large bushes between our house and the neighbor's. We filled two huge recycling bins and I slept like a baby last night. It was a lot of work.
Once again, I am finding that the more I physically do, the more I am able to do. Exercise makes both my body and breathing better.
The Irish Fiddlers have a rehearsal tomorrow evening, a gig at the brewery on Wednesday evening and a gig at a new venue at a Wine Shop on Friday evening. Very swanky Wine Shop. My fingers will have blisters by the end of the week.
But, the focus of the week will be on Wednesday when I will be hosting a birthday luncheon for my two favorite children - Winnie and Oliver. The baking will begin tomorrow and they are due here on Wednesday morning. They don't have a yard and love to water my plants. After lunch, I thought I would give each a hose and let them lose on the gardens. They somehow always end up getting soaked!
Yesterday, Michael and I attacked the large bushes between our house and the neighbor's. We filled two huge recycling bins and I slept like a baby last night. It was a lot of work.
Once again, I am finding that the more I physically do, the more I am able to do. Exercise makes both my body and breathing better.
Saturday, July 8, 2017
Not Happy
It was a rough Friday. Mom and I got our errands done, I bought two sets of pajamas and a lovely robe for Michael's mom and a gift card to be shipped today. The drive into the city was pretty easy and I was ready for the medical test an hour early. After a quick lunch, I sat in the waiting room and ...waited.
I was brought into a room I remembered from the last time I did this test years ago. The lovely tech did an upper swallow test using various measurements and had me drink different liquids. I passed all the tests and was able to watch the X-ray of myself swallowing them all.
What about the hernia? What about the Nissen surgery site? Turns out THE DOCTOR DID NOT WRITE ORDERS FOR THE MORE EXTENSIVE TEST. The major test, the test to look at the hernia and surgery site, DID NOT HAPPEN!
So, let us recap: The surgeon ordered XR Pharynx/Speech Eval W Fluoro and a barium esophagram from one lab and a 24-hour pH Study and esophageal motility study from another lab. The first set was at yesterday's lab but I only had one test. The other set of tests have not been even put onto the calendar after being told they would get in touch with me for a September/October date.
I am frustrated. My lungs are not happy and I am needing extra inhalers. Lots of wheezing and shortness of breath going on.
In the middle of the night, I remembered that the surgeon's assistant, Brenda, gave me her direct phone number and said to call if I had any problems. I will be searching for that number today and will phone her Monday. I am definitely having problems!
I was brought into a room I remembered from the last time I did this test years ago. The lovely tech did an upper swallow test using various measurements and had me drink different liquids. I passed all the tests and was able to watch the X-ray of myself swallowing them all.
What about the hernia? What about the Nissen surgery site? Turns out THE DOCTOR DID NOT WRITE ORDERS FOR THE MORE EXTENSIVE TEST. The major test, the test to look at the hernia and surgery site, DID NOT HAPPEN!
So, let us recap: The surgeon ordered XR Pharynx/Speech Eval W Fluoro and a barium esophagram from one lab and a 24-hour pH Study and esophageal motility study from another lab. The first set was at yesterday's lab but I only had one test. The other set of tests have not been even put onto the calendar after being told they would get in touch with me for a September/October date.
I am frustrated. My lungs are not happy and I am needing extra inhalers. Lots of wheezing and shortness of breath going on.
In the middle of the night, I remembered that the surgeon's assistant, Brenda, gave me her direct phone number and said to call if I had any problems. I will be searching for that number today and will phone her Monday. I am definitely having problems!
Friday, July 7, 2017
Frenzy Friday
There is so much to do today that I needed to make a list! Fortunately, I fell into bed last night within minutes of leaving the Irish Fiddling rehearsal and slept really well. Here we go:
Out the door by 7:30 to buy my mom her Jimmy Dean Breakfast Sandwiches with Canadian Bacon and Egg Whites as her Safeway has stopped selling it. She wants me to buy four (!) boxes of them.
Drive over the pass to her house.
She always has a jar for me to open or a problem on her computer or something for me to read waiting for me on the kitchen counter. After helping her, we will jump into my car and go to Starbucks for a bit of caffeine to get us through the morning.
We found a local attorney to make changes to her will but the attorney wanted a copy of mom's trust and will. We will travel north on the nasty freeway and drop the copies off at her office on our way further north to the mall.
JC Penney. They will notice the two of us with pressed noses against their doors waiting for them to open at 10:00. The goal is to find fantastic pajamas and a robe for Michael's mom for her birthday. I want to get all of her presents into the mail tomorrow. We only have an hour to get it done.
Back on the freeway south this time and back to mom's for a goodbye. I must be on the road north to the city by noon.
Noon. I will begin the long nasty drive into the city to the hospital for the Barium Swallow Test at 2:00. The test may take an hour or more. I am hoping for only an hour. It will take another hour to drive home but wait! There's more!
The Irish Fiddling gig at the organic market begins at 5:00 with set up at 4:30. It is a two-hour gig. Somewhere in the day, I will need a bit of lunch or something to eat before the gig.
By the time I am home tonight, I expect to be totally spent. Exhausted. It will take the weekend to recover.
Let the fun begin!
Out the door by 7:30 to buy my mom her Jimmy Dean Breakfast Sandwiches with Canadian Bacon and Egg Whites as her Safeway has stopped selling it. She wants me to buy four (!) boxes of them.
Drive over the pass to her house.
She always has a jar for me to open or a problem on her computer or something for me to read waiting for me on the kitchen counter. After helping her, we will jump into my car and go to Starbucks for a bit of caffeine to get us through the morning.
We found a local attorney to make changes to her will but the attorney wanted a copy of mom's trust and will. We will travel north on the nasty freeway and drop the copies off at her office on our way further north to the mall.
JC Penney. They will notice the two of us with pressed noses against their doors waiting for them to open at 10:00. The goal is to find fantastic pajamas and a robe for Michael's mom for her birthday. I want to get all of her presents into the mail tomorrow. We only have an hour to get it done.
Back on the freeway south this time and back to mom's for a goodbye. I must be on the road north to the city by noon.
Noon. I will begin the long nasty drive into the city to the hospital for the Barium Swallow Test at 2:00. The test may take an hour or more. I am hoping for only an hour. It will take another hour to drive home but wait! There's more!
The Irish Fiddling gig at the organic market begins at 5:00 with set up at 4:30. It is a two-hour gig. Somewhere in the day, I will need a bit of lunch or something to eat before the gig.
By the time I am home tonight, I expect to be totally spent. Exhausted. It will take the weekend to recover.
Let the fun begin!
Thursday, July 6, 2017
Michael to the Rescue!
Today's rehab class should be interesting. I seem to be short of breath and want to see what my saturation numbers are during exercise. I really miss Sherman and Dick in the rehab class. If I hadn't offered to drive Jeannie to the class, I wonder if I would attend as regularly. It is so good for me to work out there and I need to remind myself how important it is to my overall health. It still is not fun like it was with my two rehab boys.
Yesterday, I got my hair cut, picked up some groceries, made phone calls, filled the car's gas tank and made a light dinner. It felt great not to have to be somewhere. The band is back together tonight! We have a rehearsal of the Irish Fiddling group in anticipation of a gig on Friday night.
We were hanging out around 7:00 last night when I got an SOS text from Natalie and the kids. Ethan was not home and they had taken a 2.5 hour walk along the ocean to the harbor. The kids were exhausted and didn't think they could walk back. Michael hopped into the car, picked them up, teased them ("Just tell me if you want to be dropped off here and walk the rest of the way!") before driving them to their parked car at the other end of town.
Chatting with Winnie last time I saw her, she mentioned that she was building a drone from the electronics to the structure itself. She buys the parts on Amazon. So, when I asked what she wanted for her birthday, she mentioned an Amazon card for some parts. We will also be celebrating Oliver's birthday and I will give him an Amazon card, too. They are coming next Wednesday for crescent-wrapped mini hot dogs as appetizers with homemade lemonade from our tree (Oliver's favorites). The main course will be ribs, potatoes, a veggie but there will be two special desserts. Oliver is a major chocolate guy so I am making homemade chocolate pudding. Winnie does not like frosting or cake but mentioned Bananas Foster (ice cream with bananas in caramel sauce) so I think I will give it a try.
Tomorrow is going to be a real challenge. I will be with mom before having to be in the city for my Barium Swallow Test (nasty drive) after she and I shop for Michael's mom's birthday presents. We will be working against massive time deadlines. Lots of stress! Oh, and we have to drop off her Trust and Will to the new attorney. AND, I will be driving home through Friday night rush hour traffic and will be late for the gig in town. By bedtime, I should be exhausted! It will take the weekend to recover!
Yesterday, I got my hair cut, picked up some groceries, made phone calls, filled the car's gas tank and made a light dinner. It felt great not to have to be somewhere. The band is back together tonight! We have a rehearsal of the Irish Fiddling group in anticipation of a gig on Friday night.
We were hanging out around 7:00 last night when I got an SOS text from Natalie and the kids. Ethan was not home and they had taken a 2.5 hour walk along the ocean to the harbor. The kids were exhausted and didn't think they could walk back. Michael hopped into the car, picked them up, teased them ("Just tell me if you want to be dropped off here and walk the rest of the way!") before driving them to their parked car at the other end of town.
Chatting with Winnie last time I saw her, she mentioned that she was building a drone from the electronics to the structure itself. She buys the parts on Amazon. So, when I asked what she wanted for her birthday, she mentioned an Amazon card for some parts. We will also be celebrating Oliver's birthday and I will give him an Amazon card, too. They are coming next Wednesday for crescent-wrapped mini hot dogs as appetizers with homemade lemonade from our tree (Oliver's favorites). The main course will be ribs, potatoes, a veggie but there will be two special desserts. Oliver is a major chocolate guy so I am making homemade chocolate pudding. Winnie does not like frosting or cake but mentioned Bananas Foster (ice cream with bananas in caramel sauce) so I think I will give it a try.
Tomorrow is going to be a real challenge. I will be with mom before having to be in the city for my Barium Swallow Test (nasty drive) after she and I shop for Michael's mom's birthday presents. We will be working against massive time deadlines. Lots of stress! Oh, and we have to drop off her Trust and Will to the new attorney. AND, I will be driving home through Friday night rush hour traffic and will be late for the gig in town. By bedtime, I should be exhausted! It will take the weekend to recover!
Wednesday, July 5, 2017
The Mountains to the Ocean
Hope you had a Happy 4th of July! Ours was marvelous! We finally bought a new couch to replace the two recliners in the family room. It is not only a couch but a reclining couch! Full size, it has two cushions, looks like a regular couch with gray tweed fabric and metal legs until one notices two tiny buttons on the side beneath the arms. Each section turns into its own recliner. Brilliant! Michael is so very happy. The bad news is that it is on back order and probably won't arrive for five weeks.
We enjoyed a fantastic lunch at Jack's, a beautiful setting and a great place for people watching. Half of my gyros and half of Michael's patty melt came home with us for dinner. We just can't eat like we used to! We hopped into our new/old car and took the long way home. We headed south, climbed a mountain then headed south on the ridge with the Bay on one side and the ocean on the other. We drove south to a tiny town high in the Santa Cruz Mountains and had to have some ice cream as it was the first time I had enjoyed sunshine in weeks!
Our little organic market in town has its headquarters in this little town, so we bought a small package of three ice cream cones there then chatted with the staff. Outside the store, there was a couple standing near their bikes, Michael asked if they wanted an ice cream cone and that began a conversation. So very interesting. They both had been through a lot, he was celebrating 28-years of sobriety and she was also proud to be clean and sober. They were living a healthy, happy life filled with quality food and exercise. We told them just a bit about my path, we embraced as we said our goodbyes, hopped back into the car for the next part of the trip.
It was a bit scary. This area was hit pretty hard last winter. Remnants of fallen trees were everywhere. The roads had taken a hit, too. To get to the coast, we needed to drive on a tiny road with edges that fell into deep canyons. One wrong move and we would have gone over the side. We connected with two other long roads that took us off the mountain to the ocean. The huge redwoods were stunning and the other plants and grasses were Spring green, so rare for this time of year. It was just beautiful. Breathtaking.
By the time we worked our way to the ocean and headed north to our home, it was 4:00 yet each beach we passed was still packed with people still enjoying the holiday. We wondered if there was going to be lots of traffic in our town as people began their way home but, nothing. We flew through town.
It had been so long since we had taken a backroad trip. Michael loves to drive, it was relaxing for him, we had music softly playing and had the time to talk. Often we sat in silence just looking at the gorgeous views. It was a lovely day and we both slept so well last night.
We enjoyed a fantastic lunch at Jack's, a beautiful setting and a great place for people watching. Half of my gyros and half of Michael's patty melt came home with us for dinner. We just can't eat like we used to! We hopped into our new/old car and took the long way home. We headed south, climbed a mountain then headed south on the ridge with the Bay on one side and the ocean on the other. We drove south to a tiny town high in the Santa Cruz Mountains and had to have some ice cream as it was the first time I had enjoyed sunshine in weeks!
Our little organic market in town has its headquarters in this little town, so we bought a small package of three ice cream cones there then chatted with the staff. Outside the store, there was a couple standing near their bikes, Michael asked if they wanted an ice cream cone and that began a conversation. So very interesting. They both had been through a lot, he was celebrating 28-years of sobriety and she was also proud to be clean and sober. They were living a healthy, happy life filled with quality food and exercise. We told them just a bit about my path, we embraced as we said our goodbyes, hopped back into the car for the next part of the trip.
It was a bit scary. This area was hit pretty hard last winter. Remnants of fallen trees were everywhere. The roads had taken a hit, too. To get to the coast, we needed to drive on a tiny road with edges that fell into deep canyons. One wrong move and we would have gone over the side. We connected with two other long roads that took us off the mountain to the ocean. The huge redwoods were stunning and the other plants and grasses were Spring green, so rare for this time of year. It was just beautiful. Breathtaking.
By the time we worked our way to the ocean and headed north to our home, it was 4:00 yet each beach we passed was still packed with people still enjoying the holiday. We wondered if there was going to be lots of traffic in our town as people began their way home but, nothing. We flew through town.
It had been so long since we had taken a backroad trip. Michael loves to drive, it was relaxing for him, we had music softly playing and had the time to talk. Often we sat in silence just looking at the gorgeous views. It was a lovely day and we both slept so well last night.
Tuesday, July 4, 2017
Downhill
I think my breathing is going downhill. Whenever mom and I were walking yesterday, I coughed. In my case, it is a sign that my saturation level is low and that I need supplemental oxygen. Checking my meter when I got home, it was lower than my usual numbers and I probably used my inhaler about six times yesterday. That is an issue as it kicks up the pressure levels of my glaucoma but I really needed to stop the coughing and the wheezing.
Dr. K. will be checking her email tomorrow and will see mine regarding the inability of scheduling the test for acid reflux. My lungs are really unhappy. When she replies to my email, I will tell her that my lungs are continuing on their downward path. I have a feeling I might be seeing her or the ER.
My blogging is very honest. Sometimes, I think it may be a bit too honest, which is why I like that none of my family or friends know about it. During a conversation, I recently referred to this blog and all the wonderful connection I have made through it. We have travelled to meet several people who reached out to me and they have become lifelong friends. They said that the information they got from this blog saved lives. That is very satisfying for me.
So, after referring to the blog, this person asked to read it with a promise to not bust me as the anonymous source. I asked that she start from the beginning as it tells a story. Somehow, I get a bit nervous whenever this happens so last night, I started at the beginning and read through the few couple years. It is amazing how much I had forgotten and I am so very grateful that I have it all written down for my family after I am gone. There is a lot of family history but also information about this horrible disease that has a genetic component. Sadly, it is bound to show up again in future generations.
Monday, July 3, 2017
Back to Another Crazy Day
It was a perfect weekend to recover from last week. Lots of naps. Early bedtimes. Quiet moments. That all ends this morning. I am leaving for mom's early this morning for her Bone Density appointment at her university hospital. After that test, we have to drive to the other end of the Peninsula to pick up her sunglasses at Costco and I want to pay my AT&T bill. She also needs to FAX her will and trust to her attorney to make a change to her will. It will be another long, frantic day.
What was lovely about the weekend was that I had conversations with Chip and Betty, Christien and Michael's mom. I also connected with the woman who had been recently diagnosed with an ILD. We spoke for over an hour on the phone and promised to stay in touch. It turns out that she was really at the beginning of her journey, also a teacher and a single parent. She cannot afford to go on disability and was still trying to work. She actually does not have a clear diagnosis at this point and I suggested that she ask for a lung biopsy. After she receives that diagnosis, I suggested that she ask for a second opinion and have the slides sent to my university hospital. Double check. If it is an ILD, she could ask for a referral to their ILD Clinic, join the ILD Support Group and continue her exercise routine as a runner. She would be in the best of hands in this area.
Due to my fractured knee and inability to complete my exercise routines, I just do not feel fit, am losing muscle definition and not breathing well. This weekend, I plotted my return to daily exercise. If I cannot get to the other rehab on Mondays or Fridays, I am going to take short walks along the ocean bluffs and build speed and time. My body really needs to start moving again.
What was lovely about the weekend was that I had conversations with Chip and Betty, Christien and Michael's mom. I also connected with the woman who had been recently diagnosed with an ILD. We spoke for over an hour on the phone and promised to stay in touch. It turns out that she was really at the beginning of her journey, also a teacher and a single parent. She cannot afford to go on disability and was still trying to work. She actually does not have a clear diagnosis at this point and I suggested that she ask for a lung biopsy. After she receives that diagnosis, I suggested that she ask for a second opinion and have the slides sent to my university hospital. Double check. If it is an ILD, she could ask for a referral to their ILD Clinic, join the ILD Support Group and continue her exercise routine as a runner. She would be in the best of hands in this area.
Due to my fractured knee and inability to complete my exercise routines, I just do not feel fit, am losing muscle definition and not breathing well. This weekend, I plotted my return to daily exercise. If I cannot get to the other rehab on Mondays or Fridays, I am going to take short walks along the ocean bluffs and build speed and time. My body really needs to start moving again.
Saturday, July 1, 2017
Waiting for a Donor
It was, after all, a frantic week. Each day was a push. Each day ended with unfinished business. Each day felt like a marathon. When I walked into the house on Friday late afternoon, I began to relax. The goal this weekend is to try to do some paperwork, connect with my niece, connect with Christien, connect with my brother, pull some weeds in the garden and poison the rest of them. A nap is listed on my "things to do."
Groceries are in the house and we are ready for the holiday. But, Monday is going to be another grind. More doctors for mom, her sunglasses are ready for pickup from Costco and she needs to FAX her will and trust to a new attorney so she can produce changes to mom's will. But, I'm not going to think about that all weekend.
I am going to think about the possibility of some sunshine - doubtful - and some reading out on the swing and listening to the birds sing.
Sunday morning, I have a special date to chat with a woman on the phone. She has my disease and was also a teacher. She is a friend of Bob in my rehab class, who is currently listed and is waiting to get a set of new lungs. I really like him. She is newly diagnosed and is being seen at my university hospital. I will encourage her to join the ILD Support Group, be tested for GERD and sleep apnea, ask about pulmonary rehab class, talk about supplemental oxygen, travel safely and just share information. I always say that I am just further down the road of having an ILD with lots of experiences along the way that I am willing to share. I hope I am able to help her.
Bob and I were talking about how mentally strange it was to pray for new lungs when, in your brain, you realize that you are praying for someone to die. I told him a story about a man I met in the ILD Support Group who told me that when he got listed, he bought and lit a candle to give thanks to the person who was going to give him the gift of lungs. He said he believed that we all have paths and lessons to learn in our lives - like being ill with an ILD - and that this gift of lungs was part of his donor's life path. Bob thanked me. It had been bothering him and this made him feel a bit better.
Groceries are in the house and we are ready for the holiday. But, Monday is going to be another grind. More doctors for mom, her sunglasses are ready for pickup from Costco and she needs to FAX her will and trust to a new attorney so she can produce changes to mom's will. But, I'm not going to think about that all weekend.
I am going to think about the possibility of some sunshine - doubtful - and some reading out on the swing and listening to the birds sing.
Sunday morning, I have a special date to chat with a woman on the phone. She has my disease and was also a teacher. She is a friend of Bob in my rehab class, who is currently listed and is waiting to get a set of new lungs. I really like him. She is newly diagnosed and is being seen at my university hospital. I will encourage her to join the ILD Support Group, be tested for GERD and sleep apnea, ask about pulmonary rehab class, talk about supplemental oxygen, travel safely and just share information. I always say that I am just further down the road of having an ILD with lots of experiences along the way that I am willing to share. I hope I am able to help her.
Bob and I were talking about how mentally strange it was to pray for new lungs when, in your brain, you realize that you are praying for someone to die. I told him a story about a man I met in the ILD Support Group who told me that when he got listed, he bought and lit a candle to give thanks to the person who was going to give him the gift of lungs. He said he believed that we all have paths and lessons to learn in our lives - like being ill with an ILD - and that this gift of lungs was part of his donor's life path. Bob thanked me. It had been bothering him and this made him feel a bit better.
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