Living Well with a Bad Diagnosis - Lung Disease

Friday, September 30, 2016

Unexpected

Michael had asked Mark to drive him over the pass to pick up another friend's car at the mechanic's but it happened at 7AM. We woke up at 6:40. It was madness. He was brushing his teeth when Mark arrived, he spit and they took off.

I was still reeling with sleep in my eyes! Coffee. I did my morning stuff, cleaned the kitchen, made the bed, organized myself for the day when - knock, knock, knock. What? I was not at all expecting to see his cute little face peeking at me through the glass. He was back. What an unexpected surprise.

It occurred to him that he really had nothing he had to do and he came home. I finished making the bed and getting dressed, we ran errands and paid bills in town before going to our favorite sandwich place to pick up lunch to bring home. I so did not expect my day to turn into this! I was going to the rehab class, which I called to cancel it.

Then, the unexpected happened. I took a two hour nap! It was delightful!

Wakey Wakey! We had to get to the city for the board meeting. All I can report is that is was so interesting and I have volunteered to work on a project.

It was now 6:30 and we were driving down the coast. Michael, in his brilliance, turned to me and asked, "Can I split a crab sandwich with you?" Oh my! Yes! Another unexpected treat! We enjoyed a quick dinner together and, as I climb into bed last night, I gave thanks for such a nice day together. It unfolded in unexpected ways.

Thursday, September 29, 2016

Back Into the City

Orchestra rehearsal was fun last night. Gerry, my Scorpio bass playing partner, was there and we had not seen each other since last March. I asked her to me reminded of her name and she laughed out loud! It is so much more fun when she is at the rehearsals. We whisper. We giggle. We tell stories about what is going on in our lives all while listening to the conductor rehearse other sections. We worked on Beethoven's Second Symphony, which I don't think I have ever played. So Beethoven.

I will be paying bills on my way to the rehab class this morning then Michael and I will meet at the house for the drive up to the board meeting at my university hospital. They serve snacks but they are hearty enough for our dinner. The meeting is to end at 6:00 but we usually don't drive off the campus until 6:45ish. Michael is usually very talkative after these meetings. For someone who had never been on a board or given a formal speech, he has become so comfortable in the meeting setting that he makes good points and is not afraid to give his opinion. Growth! Love that.

After the 2.5 mile walk along the ocean yesterday morning, I definitely felt my thighs and hips right after the walk but nothing is stiff or sore this morning. We plan to walk again this weekend and love the early morning because the trail is not busy and we feel we have the ocean to ourselves. During rehab today, I am interested to see if my breathing is better than last week. The more I exercise, the better my breathing.

Wednesday, September 28, 2016

Urology Clinic

We just got back from an hour walk on the trail along the ocean. The fog is back and it feels fantastic. I can breathe! We walked 2.5 miles and hope to push ourselves a bit further with each walk.

Yesterday. What a day. I drove into the city while drinking yet another bottle of water as I had to arrive with a full bladder. My visit to the urology clinic was due to the constant UTI problems as well as the fragile tissue issue during my PAP smear for the lung transplant clinic's non-invasive testing.

I arrived and was in the clinic for my 8:30 appointment (but told to be there 15-minutes early) at 7:30. Always chronically early, I was shocked that they called me in to begin right away. First, I was asked to leave a urine sample in the bathroom. By that time, I was becoming uncomfortable so it was a major relief! Then, a wonderful woman took my vitals and a quick sonogram of my bladder to see if I had been able to completely empty it. She told me the doctor was on a telephone consult but would be in as I was her first patient.

She arrived. The doctor was wonderful and listened and had read my file so she was aware of my lung issues. She told me my story was very inspiring. So sweet. After a quick pelvic exam, she came back to talk about going forward. She believed that the dryness was the cause of the constant UTIs and the fragile tissue. As I had been using Replens for over a month, she said my tissue looked and felt like normal, healthy tissue. She usually has her patients like me use Estrace everyday for two weeks then twice a week thereafter. That is a lot of hormones. But, she said the since my tissue looked healthy and I had not suffered a UTI since being on Replens, that we would stick with my routine unless I begin to get UTIs again.

They did a stick test on my urine and it tested that there were red blood cells present. She sent it down to the lab as the stick tests often have a false positive. If there was blood, I would have to have a cystotomy. So, I left not really knowing. During the day, I got the lab results. No blood. I also got an email from the doctor to confirm that, with no blood in the urine, I would not need anymore workup. I have an appointment to see her in January and time will tell whether the Replens is enough or if I am going to need the stronger stuff. Hormones.

It's so much fun getting older! Who knew I would be missing my period?

Tuesday, September 27, 2016

Into the City

Up at 5AM, dressed, coffeed-up, packed breakfast for the car, filled oxygen tank, eye drops, inhaler, nose spray. Takes a lot to get me out the door! No later than 6:15, I need to be in the car and on my way into the city for my urology clinic appointment. With a full bladder. That's the hardest part! I have four bottles of water with me and will drink two on the way up and sip on the others, if needed, once I get there.

I will blog about the appointment tomorrow.

Mom and I tried to find a cooler place to hang out but all my normally cool spots were steamy hot yesterday. We bought new books at the book store. She got me hooked on the Clifton Chronicles written by Jeffrey Archer and we bought the next four books. Addicted. We drove around two separate areas looking for someplace different for lunch and found...Dickey's BBQ! I swear it is the only one on the Peninsula. Michael and I had our first Dickey's in a tiny town in west Texas. Free soft serve ice cream! Mom had a pulled pork sandwich, baked beans and ate every bite. The owner came by for a chat, was enthralled by her and she left with a card for a free lunch in her purse!

But, it was hot. At home, we opened up the house but it was airless. Even with fans. Finally, it began to cool right before bedtime.

The debate: I watched. Michael watched football in the other room but watched the highlights afterward. Enough said!

So, here I go. I am a bit nervous and hope it all goes well.

Monday, September 26, 2016

Still Sizzling

It was so hot yesterday, we slept with just our robes covering us until later in the night when our feet got cold. Today will also be hot but a huge cool down is expected tomorrow. At mom's, it will be in the 90s but here on the coast, only in the high 70s. Still too hot! Mom and I don't have anything we have to do today but I think we will seek out some air conditioning!

I have a scary busy week ahead. One of these days, I hope to have a day off! Crazy. Michael and I did get away yesterday for a fish lunch at the harbor. Since the 49ers and Giants both had games, the traffic was not too horrible. My plan is to not panic and take one day at a time.

Today - piece of cake. Mom and I together. We had a planned rehearsal of the Irish Fiddling group at 6:00 but I think everyone decided they wanted to stay home and watch the debate. If they change it to tomorrow, Leslie can't be there until 7PM, which means I only play for 30-minutes. Hardly worth the effort.

Tuesday - the dreaded doctor appointment. I am meeting with the Urology Faculty Practice at my university hospital in the city regarding my constant UTIs. After completing the packet of paperwork, it is clearly written that if one does not arrive with a full bladder, the appointment will be cancelled and the person will never be allowed to be seen in the clinic again. Wow. So, I have to be at the appointment at 8AM and it takes about an hour to get there, but this is during rush hour. Need to build in extra time. With a full bladder. And I will probably arrive early. With a full bladder. They also warned that it is a several hour appointment. I am very nervous about it all. Afterward, I have pulmonary rehab, if I feel like it. Oh, and the Irish Fiddling rehearsal that evening.

And that's just today and tomorrow.

Saturday, September 24, 2016

Sizzling!

Today, it begins to heat up. It is going to be so hot tomorrow and Sunday that everyone here on the coastside is unhappy. We want our fog back! No one has air conditioning as the hot days are very few and far between. So, we throw open all the windows, kick on the fans and try to "enjoy" being hot and miserable.

Mom and I have become smitten with a series of seven books written by Jeffrey Archer. She read book #2 in about two days and has passed it off to me. The Clifton Chronicles. I have a feeling my nose will be in a book all weekend.

I am feeling so much better but I still don't want to push too hard, yet. Next week is packed. Every single day. I get a bit overwhelmed when I look at the calendar so I am just not looking at it this weekend. Instead, I am washing and ironing the sheets on all three beds in the house. Later, I will water the pots in the garden and make a nice salad for dinner (Whopper in a Bowl). But mostly, I will sit under our large umbrella outside this afternoon and read and maybe fall asleep. Good goals for the day.

Indian Summer has arrived.

Friday, September 23, 2016

Maybe Bluegrass

One does not expect to get a possible gig for their "bluegrass" group when meeting with a very cool glaucoma doctor but, that is what happened yesterday. He is involved with a jazz camp with a connection, has become an excellent jazz pianist and asked for my Irish Fiddling business card when I told him about the group. Bluegrass began as Irish music and evolved over time. We also play it a well as Scottish music. The possible gig is with a high respected jazz organization in the city. Talk about cool!

I stumbled to the rehab class, met up with Sherman and, while chatting, I realized that I was falling asleep! I was totally exhausted and just wanted to go home. So, after paying for parking and changing into my workout shoes, I left before the class began to do the food shopping then headed home. Michael was already there and was not surprised that I slept for over two hours before making a simple roasted chicken for dinner. Last night, I fell into bed at 8:30PM and didn't move at all during the night until 6AM. I feel so much better this morning.

The plan for the weekend is to slow down, rest, sleep, cook good food and enjoy the weather. It is going to be 80 degrees on the coast on Sunday and Monday. That is hot for us!

Today, it's just mom and me. Together. Talking, of course!

Thursday, September 22, 2016

Research Coming

The 8th Annual ILD Luncheon was lovely. Besides the choices of chicken, beef or vegetable kabobs, there was rice, fruit and salad. All the pulmonary biggies were there and gave short updates before answering questions. The entire transplant team was present, most of the PFT lab techs, clinic managers, head of research and the pulmonary chair all were introduced. There were also approximately eight lung transplant patients present, all looking fabulous.

Research. I was able to get a list of ILD studies happening at my university hospital but most are for IPF patients only. I vow to you, dear reader, that I will attend the October meeting of the ILD Support Group when the latest drug trials and research will be presented to the group. I LOVE these meetings as it gives me hope, not only for myself but for my son and his future children. My disease must have a genetic predisposition. I swear, every time I hear William has been sick or has a lung infection, I panic. He is a bit young as this disease usually presents itself when one is around 50 years old but I still worry.

At the rehab class on Tuesday, Sherman was told that the founder of our rehab program was "on vacation" for six weeks. Sherman and I think something is up. She has been struggling with liver and lung cancer, has been doing well but we have a feeling she won't be returning. She already trained another person to take her classes but when the visionary is gone...look at Apple. We hope we are wrong. We hope she is traveling or cleaning her house or just resting.

I peeked ahead on my calendar looking for a day off. My schedule for the next week is as packed as this week. I need a break! The orchestra rehearsal was grueling last night. Sight reading pieces I had never played before really gave the old brain a workout. Even though I think this is my last concert with the orchestra, so I can focus on the Irish Fiddling group, it became clear last night that reading music was good for my brain and maybe I should re-think leaving. But, it was a late night for me and I am dragging this morning.

Crazy day ahead. I have to drop Michael off so he can take a friend's car to a mechanic at 8:30 this morning then I have an appointment to visit my glaucoma doctor before the rehab class. After class, I am meeting Michael then we are going food shopping together. I still will need to make some dinner. Long, busy day. I am so grateful that I am well enough to do it all!

Wednesday, September 21, 2016

Lunch!

We felt a bit of guilt holding up rush hour traffic while crossing the highway to the ocean yesterday morning. We only met a couple of bicyclists during our walk, the water was calm, there was no wind and we so enjoyed ourselves. I must say that we didn't walk the distance I thought we would and I even accepted a ride home from the highway when Leslie saw us stopped while I caught my breath. After a shower, I bought and shipped some Peet's to send to Mary in Knoxville along with my brother's smoked trout. She is going to be so happy. I needed gas and meat for dinner and a few item at CVS. After a run by the post office to mail my sister's birthday card, I headed to rehab class. It was so nice to see everyone after being gone last week. Though the years, I have become more appreciative of the people and conversations. It makes working out so much easier!

Within an hour, I am heading to the city for the ILD Support Meeting Luncheon. Lots of conversations! Lots of fun!

In general, I feel better this morning and seem to be recovering from the company and gigs. The exercise helps and I am sleeping so well at night. It just takes time to build up my stamina again. I am a bit worried because I have a long drive to and from the luncheon and an orchestra rehearsal tonight. Tomorrow is going to be rough as I have an early eye doctor appointment then pulmonary rehab.

I feel like I am limping into the weekend.

Tuesday, September 20, 2016

Mornings

It is still dark but the sky is beginning to lighten and is the backdrop for dark silhouettes of the trees and mountains. I love this time of the morning. As soon as we get a quick bite to eat, we are putting on our walking shoes and hitting the coastal trail. Our new resolution. Michael wants to lose some weight and I want to get my breathing back. After showers, I will get some cards and a gift for Mary in the mail before going over the pass for the pulmonary rehab class. Sherman and I haven't seen each other in a week! He will have lots to tell me. I will hop on the scale while there as I think I have lost weight since seeing the nutritionist before the company.

The Irish Fiddlers had a rehearsal last evening and it was so warm, we played on Leslie's front porch. Ron, next door, was outside washing his car so he could enjoy the music. Kelly and Kevin on the other side came by with their sweet daughter for a few minutes.

We live in a great neighborhood.

I contacted Dr. K. yesterday regarding her request that I speak with her CF patient who needs to have the GERD surgery called a Nissen Fundoplication. Dr. K. gave me her contact information, I phoned her last week, left a message but have not heard from her. I didn't want Dr. K. to think I never contacted her. Her reply? "You can lead a horse to water..."

I swear we are becoming friends.

Tomorrow should be fun. It is the 8th Annual Luncheon of my ILD Support Group and will feature the top brass at the hospital, head of the pulmonary program, recent lung transplant recipients and some special guests. I usually bump into people I haven't seen in awhile and I always seem to be the last person to leave.

Monday, September 19, 2016

Feels Like Monday

My breathing is better this morning. Taking a couple of days off to do nothing has helped me recover from our company and the Irish Fiddling gig. I will still be using my inhaler throughout the day and taking it easy while with mom. Tonight, there is an Irish Fiddling rehearsal but Leslie and I have called a band meeting.

It is going to take all of my experience working with the divas at the school where I got sick to run this meeting. The bottom line is the sound is out of balance, the guitarist sometimes gets into the music and bangs his guitar making it impossible to hear the fiddles and the beginning and end of the songs have become messy again. Also, there needs to be a statement about changing the music and the need to notify anyone not in the room at the time of the change. It was not good that I played a song in a gig and a major change was made after I left a rehearsal. It sounded horrible.

I must mention the weather. It is stunningly gorgeous and the tourists invaded our coastside all weekend. We went into town for lunch yesterday and enjoyed watching everyone walk by our window. Lots of kids. Lots of couples. Today, it is expected to be in the high 80s over the pass but high 70s here. That is a bit too hot for us! We are delicate!

Our new resolution begins tomorrow. Michael and I enjoyed walking to the beach with Chip and Betty so much that we made a pact to walk at sunrise on Tuesdays and Thursdays. We'll cross the highway, catch the coastal trail and walk, adding distance every walk. This is something I have been encouraging Michael to do since he retired because he has gained some weight and wants to lose it. Though he watches his food intake, he needs to also exercise in a consistent manner. He has heard my speeches!

Sunday, September 18, 2016

Recovery Day Two

I am feeling better this morning but very thin. My appetite is gone, which means I am working on an infection. I cough only on exertion but my inhaler is working wonders as it seems to calm the coughing down.

Sleep. Michael and I both took a very long nap yesterday afternoon and I slept for nine hours last night.

The outside flower pots need watering so that is the only thing on my list to do today. And lunch. I need a hardy lunch. it should be interesting to weigh myself on Tuesday.

It is still dark this morning, the garden lights are still on, the house is cool like a fall morning, we are having coffee and watching Sunday Morning. Afterwards, we will watch the DVR of the Formula 1 race from Singapore. It is one of my favorite races, which is run at night because it is so stinking' hot. When William's tour plays Singapore, they stay at a hotel near the race track. It has three towers connected by, what appears to be, a ship on the top. He told us it is actually infinity pools in a park-like setting and it feels like one is going to swim off the side of the building. He also said that of all the places he has been, he thought we would like Singapore the best. If only I could travel! Maybe one day after lung transplants. Photos: HERE

Every year, my ILD Support Group throws a luncheon and invites doctors, staff, lung transplant recipients and speakers. I am going to attend this Wednesday and am looking forward to seeing people I haven't seen in awhile.

Saturday, September 17, 2016

Recovery Day One

The coughing has begun! My saturation numbers are awful! Both proof that I did too much and slept too little and had waaaay too much fun with our recent company. My plan? I am doing paperwork and not much else today. I plan to sleep and to rest and to be bored. On Monday, to get my health back, I will begin with daily exercise. Not too hard, not too long but everyday.

I really did have a marvelous time with all the company and I do miss having people around.

Yesterday, Mom and I ran a bunch of errands and shared a Nordstrom lunch before I did a quick run in Trader Joe's. There is food in the house! I am going to make some Scotch Eggs for our breakfasts for the next few days.

So me. On the couch. Napping. Resting. Reading. That is where I will spend the majority of my day today.

Friday, September 16, 2016

Home Alone


Home alone. Anna and Doug left yesterday morning for their drive down the coast for the night before heading home to the desert today. They had a fantastic time. Wednesday, we walked the closed road near the tunnel right along the ocean. The whales were in bloom! They were mesmerizing.  There were four different pods rather close to the shore and were breeching. We must have watched for an hour. We finally pulled ourselves away and, while heading back to the car, Doug stopped all the other hikers to tell them where to find the whales and even pointed out a few. I have never seen him so excited.

From there we took them to lunch at a restaurant just on the other side of the tunnel, right on the ocean. Crab sandwiches. A total hit. But, the big surprise was spumoni! Both he and Michael said it was the best they have eaten in years and so often hard to find. A bonus!

Tuesday's pedicure - Anna's third one ever
We got back to the house and I fell into bed for a two-hour nap. The night before, Anna and I got talking until almost 2AM and I was exhausted. After I woke up from the nap, I was going to cook a simple dinner of potstickers but NO! Doug suggested that we go back again to the place they had walked to for lunch the day before for a lite dinner because locals get 20% off on Wednesdays! We sat outside, no wind and watched the sunset over the harbor while having another lovely seafood dinner. After we got home, Anna and I went for a long walk in our neighborhood then I fell into bed.

Last night, Michael went to the SF Giants game while I played a gig with the Irish Fiddlers in town. It was not my best performance as I was just exhausted. Always fun, our neighbors Lisa and Mike hung out with us, there was a good audience but I was not filled with performance energy.

Today, I need to food shop with I am over the pass with my mom. We are going to spend the day together then have a nice lunch. My plans for the weekend? NOTHING. I need to rest and nap and stop or I am going to get sick.

Wednesday, September 14, 2016

A Full Day of Fun

Anna and I got talking last night and were shocked when we realized it was 1:30AM!! Oh my! I slept until 7AM when the light and sunshine pried my eyes opened. What a day we had!

Doug loved my Eggs A Different Way - hard-boiled eggs with the yolk removed and filled with low fat cream cheese with thyme wrapped in thin bacon and baked. Anna enjoyed the crustless quiche with pancetta, mushrooms and zucchini. Anna and I had our toe nails painted BLUE in the morning while the boys walked the hour to lunch. They saw many whales and Doug loved the walk actually on the beach. Each couple ordered a cup of chowder and split the 1.2 pounds of lobster claws in the lobster rolls. OMG! Michael and Doug also shared some Blue Point Oysters. With the views and after the long walk, they both loved our lunch.

Last evening, after a snack, we rolled the bass next door and they settled in for over an hour of Irish Fiddle music as we practiced for Thursday night's gig. Doug ended up singing along on Cripple Creek! I don't think they wanted to leave! It was so kind of the group to welcome them and make them feel at home. They had a ball.

So now it is 10:30, the clock on the wall shows 8:45 but we only discovered that later. The battery was dead. Michael headed to bed, Doug went to read an hour earlier and Anna and I just got talking. We couldn't believe it when we realized the clock was stopped and it was 1:30!

Today, I was going to take Anna for a walk to the beach but we will see how she feels this morning. On our way to lunch, we will show them the tunnel and walk the old highway high above the ocean. Lunch with be splitting the crab sandwiches at the restaurant right on the ocean. I hope the whales are in bloom today.

Tuesday, September 13, 2016

Hanging Out Together

BIG NEWS: The sun is shining for the first time in days.

I am exhausted but am drinking coffee and moving forward! We will have a quiet morning of showers and relaxing before Michael and Doug head out for their long walk on the ocean to the lunch venue. Anna and I decided we would wait for them in the bar then have a seafood lunch together. We are pushing the lobster rolls filled with 1.2 ounces of lobster. I am having a salad...

After lunch, Anna and I are going to see if we can get our toe nails done, we'll have a snack then go next door for an hour of Irish Fiddling music. Doug is really looking forward to that! It is going to be a long day.

Yesterday, they arrived a couple of hours after Chip and Betty left so I was able to pull the house together and relaxed a bit. The barbacoa was a big hit as was the quick Fruit and Cheese Pizza. What a difference a year makes! A year ago, Doug was struggling with balance issues then less than a month later, he had surgery for a brain tumor. He is doing so well and it is rather miraculous that we were carrying on a conversation together with no effects from the surgery.

Hopefully, it is going to be a fun day!

Monday, September 12, 2016

One Down, One Go Go

Chip and Betty arrived around noon yesterday and we had a wonderful time, talking non-stop for hours and hours. Mom was having so much fun just being with her son. Dinner was perfect, the sausages per a hit as was the pancetta and potato gratin. Mom even took a piece of Strawberry Pie home with her!

At dawn this morning, we walked across the street to the ocean. It was cool but not cold and there was no wind. They just wanted to breathe in the ocean air. Chip even went into the very cold water up to his knees! Michael and I made a vow to begin to walk two days a week together along the shore.

They are the easiest house guests ever! They slept in their RV in our driveway and made no demands whatsoever. I told them they can stay when they needed to be in town for her 97-year old mother. They are here because her 78-years old brother is on hospice and they want to see him one more time.

After they left, I made a Fruit and Cheese Pizza, cleaned the kitchen, mopped the floors and vacuumed. The house is ready. I pulled on some clean cloths so I am ready.

Michael's sister Anna and her husband Doug should arrive in about 90-minutes. I will serve the Barbacoa and will even make a quest dip for our main food for the day. We will have leftovers or crackers and cheese later this evening.

I have an Irish Fiddle rehearsal tomorrow night and will go if Anna and/or Doug want to watch. There will be Irish whiskey involved! That's a bribe! We have a gig on Thursday night so I really should try to attend. Wednesday night is the first rehearsal of the orchestra. I am planning to take Anna and show up to sign for my music. We won't stay.

What a crazy week. I hope it doesn't kill me.

Sunday, September 11, 2016

Ready

I made it! I am ready for the company to begin to arrive within hours. Mom, Chip and Betty. It was one heck of a day yesterday and I was totally spent by 7:45 when I fell into bed last night. The yards and windows and cleaning the swing were finished by 11:00 then I began cooking. Boy, did I cook. It was 6:30PM by the time I was finished. Non-stop. I even did the laundry and ironed while waiting for the barbacoa to finish cooking.

Because I would drive myself nuts by weighing myself every 10-minutes, I do not have a scale in the house. Today is a day I wish I could weigh myself. I usually have the clues of my weight by how my wrists look, the looseness of my watch and the size of my ankles. This morning, I think I am the lowest weight I have been since 1989. A long time. Even my smallest rings are twirling on my fingers.

After showers, Michael is going over the pass to bring mom to the house for the day. Chip and Betty are due around noon or a bit later. They will be leaving tomorrow morning. I so wish they could stay a few more days but, the other company is due tomorrow around noon.

Everything is done and cooked and baked so now I can do nothing but enjoy everyone. And try to remember to take lots of photos!

Saturday, September 10, 2016

Getting Closer

The countdown begins. My mom arrives around 9:30 tomorrow morning and my brother and his wife by lunchtime. We will have the entire day together, a very rare treat. They are in town to see her son, her mom and her brother, who is in hospice but has stabilized.

The front yard is finished. Windows, front door, gardens, watered and ready. This morning, I will attack the back yard and clean the cobwebs, wash the windows, cut the grass, water, clean the swing then it, too, will be ready.

Food. The rest of the day will be cooking and baking. Breakfasts, lunches and dinners: crustless quiche with pancetta, zucchini and chives; hard-boiled eggs stuffed with tarragon cream cheese and wrapped in thin bacon and baked unit crispy; the butter for our open-faced  baked ham and cheese sandwiches for tomorrow's lunch; the barbacoa for lunch on Monday; strawberry pie; sun-dried tomato dip; pancetta and potato gratin for dinner Sunday night.

Anna, Michael's sister, is dealing with back spasms and I worry she will be in pain during the long car trip. She had some shots and is now on prednisone along with other drugs to try to calm it down. She has a problem with pain in her back, knees and feet. Osteoarthritis. They are checking to see if she has Rheumatoid arthritis. Let's hope not!

Once everything is done, I can relax and just enjoy the company. We will be taking long walks along the coastside, trying to spot some whales, strolling down Main Street, having pedicures, eating lunch out with Anna and Doug and just hanging out. Can't wait.

Friday, September 9, 2016

Can You Hear Me?

Michael is one happy boy. His ears have been blocked for a long time but he didn't complain. We recently tried to clean them, got some gunk out but still, one ear was totally blocked and the other was just a bit better. After his haircut and shave, we went to Kaiser to have his ears cleaned. Free! We met a great guy who loved his job and he gave it a good college try but the ears would not clear. Finally, he set up a quick appointment with a ENT and magic happened! The doctor even let me see the blockage! It was fascinating! No wonder the water pressure wouldn't help. Both ears were blocked and he had to use a metal tool to remove all the wax. It was a lot. Suddenly, Michael could hear. He said he noticed his breathing, the squeaking of his shoes and even noticed the sound of the sheets when he climbed into bed that night. It was so loud, it almost hurt! By the morning, his brain had adjusted to it.

My liver needed a sonogram to make sure it was behaving itself. The tech was so much fun and we talked throughout the entire hour-long test. I got the results, my liver is very slightly changed but they also checked other organs including the gall bladder, bladder, kidneys, pancreas and stomach. It was a deep relief to read such a positive multi-organ report.

Before the test, I ran into Sally, who is the Head RN of the Lung Transplant Clinic and our ILD Support Group. They are throwing their annual luncheon in a couple of weeks and I told her I felt strange attending since I only went to one meeting. She said to come. She wanted me there. So, I think I will! She also mentioned how I looked like a teenager and so thin. I think I am probably almost ten pounds lighter than the last time we saw each other. 

Because it was such an early appointment and I had to drive Michael over the pass to pick up his car, we were on the road very early. After the test, I hit four food stores and bought everything for the company. I was exhausted and spent.

I have been checking things off my to-do list and hope to finish the front yard and windows after mom's PT appointment this morning. Tomorrow is going to be the biggest push to have everything ready for our company coming on Sunday. 

Wednesday, September 7, 2016

Shivering

Rehab class felt fantastic. I realized that nothing hurt when I jumped onto the treadmill. The torn tendons in my hip seem to be completely healed, the tendons in my shoulder have also healed after many months and there was no knee pain at all. Everything seemed to be happy. I was dripping wet when I finished the routine but I felt stronger and was breathing so well yesterday.

When I started the liquid diet to lose weight to get under the 25 BMI required for lung transplants years ago, I had problems being cold, especially at night. I would shiver for hours at night even underneath piles of blankets. After my body adjusted to the 800-calorie liquid diet, supervised by a doctor and nutritionist at my university hospital, I no longer shivered at night. 

Yesterday, I was busy. After a simple breakfast of a Wasa cracker with peanut butter and a lunch in the car on the way to rehab of a child's hamburger from McDonalds and we had six shrimp with cabbage for dinner. Some dear friends dropped by afterwards so I never ate anything else before jumping into bed. I was cold and shivering for most of the night, which made me realized that I had not eaten enough food and calories.

Michael and I are spending the entire day together, which means I will probably have a hearty lunch. We have to drop his car off again then get back here for his haircut and a shave before he has a doctor's appointment this afternoon.

The poor guy has been struggling with his left ear. It is blocked. We have cleaned it but have not been able to clear the blockage but did get some brown wax out of his ear. We finally threw in the towel and made an appointment to have them cleaned, back over the pass, at 2:00PM. 

Lots of driving today. Lots of time in a car together. Lots of time to make sure we have everything covered in preparation of our company coming on Sunday. 

Tuesday, September 6, 2016

Back to Life

Enough fun! Time to get back to real life! I'm looking forward to the pulmonary rehab class this morning but need to run a couple of errands on my way there. I always have better stamina after working out and my breathing is so much better. Working out hard enough to break into a sweat, like a racehorse, is my goal everyday but sometimes life intrudes. I need to not let it stop me from this daily goal.

The preparations for all the company coming beginning Sunday are moving right along. We got most of the bigger jobs done yesterday and on the weekend. There is not much I can do until right before they all come - removing outdoor cobwebs, washing the front door, cleaning the windows inside and out, final yard work and cooking. Food shopping will happen on Thursday after a sonogram of my liver.

My breathing has been better lately, which is such a relief. I still need oxygen whenever I work in the gardens or do any housecleaning, but I don't need it to just walk down the hallway. Out in the world, I am okay if I walk slowly. It will be interesting to see my saturation numbers during rehab class today.

Monday, September 5, 2016

A Ride and a Party

Michael and William have been building a 1966 Mustang convertible from the frame up for several years. It has been a fantastic experience for the two of them and it will forever be in William's family. They discuss every new twist to the car but now it is ready for paint. They are going with the original color of the car, green.

Yesterday, we drove the car down the coastisde, with the top down and in the fog, to a very fancy campground for rich people. They have a nice restaurant there and no tourists know about it so it is never crowded. It was a beautiful drive down, the heaters going full blast as I looked for whales. They were not in sight. We split a hamburger then drove back up the coast. Whenever we take it out for a drive, we take a photo in front of our destination and message it to William. He messaged back that it looked great.

Last evening, we were so happy to spend the evening with Rick and Natalie but especially Melanie, who is returning to college in two weeks. She has declared her major as math, which made my head hurt talking with her about her upcoming classes as a junior.

Natalie worked so hard for many years to finally receive her Master's Degree in Nursing in May, while working full time. With her degree in hand, she was offered a teaching position at the local junior college with an exceptional nursing program. They have been in session for two weeks and she is definitely feeling the overwhelming work of a first-year teacher. Before the year began, I suggested that she should book a vacation during their spring break as she is going to need to rest and relax. Sitting around a pool would be perfect. She laughed last night and said she got why I had mentioned it. She is already in need of a break. The second year is going to be so much easier but that first year is really a lot of work.

Today is going to be quiet. I need to water the yards, clean the refrigerator, clean the vents over the stove, iron, and pay some bills. A week from today, my brother leaves and Michael's sister arrives. A week. I'll be ready.

Sunday, September 4, 2016

Inhale

It was a very quiet birthday for Michael yesterday. The real party will be today at Rick and Natalie's and will feature a lovely, homemade birthday cake with candles.

I was able to do a lot of gardening, made lists of everything I need to do and when, and put together the food shopping list. Today, I will attack the stack of paperwork needing filing and clean the drawers in the kitchen.

After making all of my lists, I am feeling less panicked about all the company coming in a week and the logistics of it all. A bit to do everyday. What I really need to remember is to go to bed on time, even when we have company. If not, I will get exhausted and ill.

Day by day. Reminder to myself to keep breathing and it will all work out just fine.

Saturday, September 3, 2016

Birthday Boy

Today is Michael's birthday. As we are still recovering from all the food at Thursday's anniversary dinner, we are planning to head to the restaurant right on the ocean to split a crab sandwich between us for his birthday dinner. Neither of us ate much yesterday and we had simple eggs for dinner.

This morning begins the work in preparation of all the company coming in a week. I will do the final trimming in the yards then begin to do the items on my do-to list. I have all day. No need to panic, which is my new mantra!

Within minutes, I need to head into town to buy some groceries to make appetizers for Michael's birthday celebration at Rick and Natalie's tomorrow evening. One needs to be refrigerated overnight. Their daughter Melanie is making Michael a special birthday cake, with candles and everything!

Birthday weekend, here we go.

Friday, September 2, 2016

Our 43rd Anniversary

What an anniversary! I so enjoyed spending the beginning of the day with our dentist for a new filling! What could be better? With partially numb lips and tongue, we drove over the pass to drop Michael's car off for a check up, bought a new 9' umbrella for the garden, had pastry and coffee at our favorite old spot, drove back over the pass for lunch at a Japanese restaurant followed by a first-time-ever stop at the new Dunkin' Donuts. Michael was a horrible influence but I so enjoyed the morning.




We both took a nap. We needed it. We did haul out the wedding photo album and found this photo of 20-year old Michael taken just a day after our wedding. What a cutie!

We cleaned up, dressed up and had a surprisingly easy drive into the city for dinner at Bix. What a place! Our first time there. They are renown for their Manhattan's and Michael said it was delicious! What really made him happy was that they had an impossible-to-find 12-year bourbon that was made by Heaven Hill and shipped off to Scotland. It was aged and bottled unfiltered and a very limited number of bottles were produced. Alchemist. He was VERY happy.


We had our three tiny appetizers - Potato Pillows with Creme Fraiche and Caviar, Dungeness Crab Rolls, Truffle Cheese Gougeres filled with French Onion Dip. Delicious. We then split the New York Strip Steak and a Fig-filled Chocolate Mousse Cake and coffee. So very good.

The two other couples near us were also celebrating their anniversaries. The sweet young couple next to us were celebrating nine years and the older couple next to them had celebrated their 43rd just a month ago. We all toasted to each other.

The surprise of the evening was that British Don had been to the restaurant earlier in the day and had paid for our entire meal. Including tip! Stunned. We need to have another evening at Bix and include Don as our guest.

What a lovely way to spend the day together, talking about our wedding day and the forty-three years that followed. We both agreed it just flew by.

Thursday, September 1, 2016

Stable Weight

The drive into the city for the appointment with the nutritionist was a nightmare. Normally, it takes about 45-60 minutes but I parked at the 1 hour 25 minute mark! Thankfully, I give myself plenty of time. Since it was so early, the wait for my blood test for the liver clinic was a fifteen minute wait. No problem. I walked across the street to the hospital and got my disabled parking discount card for the day. Finally, about 30-minutes early, I arrived to my friends at the Weight Management Group.

Big secret when dealing with large, university clinics for healthcare: make the front desk people your friends. It is amazing how they can open doors and offer suggestions and make things happen when you are nice to them. I have seen them treated horribly and just cringe. Foolish people.

While waiting to check in, the head of the board we sit on at the university and I bumped into each other and hugged! Love that! We got some "business" done and a nice conversation. Michael and I will see him later this month. This is the doctor who, I hope, will take Michael on as his primary Medicare doctor in a year.

My weight. Well, after William's visit, I was four pounds higher but it didn't stay around. Yesterday, I was happy to see that I had lost three pounds and Mr. B. was happy I had gained a pound from my last visit. I would like to stay here or even lose another pound before Anna and Doug's visit as I know we will be eating more.

Today is our Anniversary. Forty-three years. I plan to take lots of photos and will post them tomorrow. Here is about our life from a previous blog: Our Story