It happened organically. I had finished with my check-out from the rehab class yesterday and was sitting at the far end waiting for Jeannie to finish her check-out. Saturation rate, heart rate and blood pressure all taken and recorded.
Mary sat next to me. She asked how my knee was doing so I jumped right in, "How are you doing with the transplant process?" Her whole affect changed. The sunny smile was replaced by a very serious face. Interesting. I had never seen that part of her before.
The bottom line is that I learned that she is struggling with insurance issues. Serious issues that I truly believe that no person who is so ill should even have to address. I remember going through it and it was awful.
After being declared disabled two years ago this coming August, she will be able to apply for Medicare. It took six months for them to approve me and it would leave her without insurance after August until they approve her. PLUS, she is over 55-years old so she will not be able to get supplemental insurance. Fortunately, her former employer is trying to work with her and somehow offering her their company insurance as a stop gap, if they can.
Nothing is for sure.
I recommended that she speak with the financial people in the transplant clinic. They have seen it all. They may know other options. The problem? She doesn't want to even contact the transplant clinic until the insurance is taken care of. Who will insure her if they think she is going to need transplants soon?
While sitting next to her, I noticed that her breathing was shallow and she was struggling. Currently on oxygen 24/7, she is further down the road than I am. On our way home, I commented to Jeannie that I need to be more mindful of both her and Mary. I think everyone is like me and that is just not true. Both these women are struggling to function every moment of every day. Both are fighters. Both are strong. In the meantime, it is so sad that Mary is not seeking the care she needs because the insurance is not in place and she doesn't want it on her medical record.
Friday, March 30, 2018
Thursday, March 29, 2018
New Focus
I feel I have lost my focus for this blog and want to get back to blogging about the specifics of living well with a bad diagnosis. Sometimes I forget that not everyone has read this blog from the very beginning when I blogged about specifics such as diet, exercise, how to adjust your house, how to function out in the world including traveling tips and that sort of thing.
In earlier blogs, I always included photos. They will return, too.
The goal will be to install some changes this weekend with a fresh blog on Monday morning. We will see how it all goes.
When I was in the rehab class on Tuesday, the new head of the program stopped and asked if I could help welcome a woman to the program today. She had gone through another program that has closed and is beginning to exercise again after over a year of sitting out.
I remember when I first joined the "other rehab" at the sister hospital for an additional two days a week of workouts. It was scary, I was the only person wearing oxygen, I was decades younger than anyone in the room and every eye was on me. I knew enough to smile and to eventually have a brief conversation with every woman in the gym. It was only when people began to ignore me as just being part of the group, thank goodness, that I began to chat with the men many months after I started working out with them. I am still friends with so many of the people I initially met in that gym over ten years ago.
All those feelings come forward today as I will do my best to help our new classmate feel comfortable joining our class today.
In earlier blogs, I always included photos. They will return, too.
The goal will be to install some changes this weekend with a fresh blog on Monday morning. We will see how it all goes.
When I was in the rehab class on Tuesday, the new head of the program stopped and asked if I could help welcome a woman to the program today. She had gone through another program that has closed and is beginning to exercise again after over a year of sitting out.
I remember when I first joined the "other rehab" at the sister hospital for an additional two days a week of workouts. It was scary, I was the only person wearing oxygen, I was decades younger than anyone in the room and every eye was on me. I knew enough to smile and to eventually have a brief conversation with every woman in the gym. It was only when people began to ignore me as just being part of the group, thank goodness, that I began to chat with the men many months after I started working out with them. I am still friends with so many of the people I initially met in that gym over ten years ago.
All those feelings come forward today as I will do my best to help our new classmate feel comfortable joining our class today.
Wednesday, March 28, 2018
Conversation in Rehab
The baby quilt for Shelley is coming along but I only worked on it just over an hour yesterday. Rehab class went well and both Jeannie and I felt so great while driving home. But, after just fifteen minutes in the house, Michael phoned and needed me to go back over the pass to pick him up. Our car was going to spend the night in the shop as they were needed to finish some work on it so it is ready for the road trip. That ate up the time I had planned to do some more sewing.
This morning, I am running over the pass once again to buy some groceries then home to have additional fun at Safeway. Newly retired Sue and I had planned to meet for lunch today but her husband was in that horrible motorcycle accident on March 11 and was released from the hospital on Monday. Home! His own bed! We postponed our lunch date.
With no lunch date, I am going to spend the afternoon sewing and, hopefully, finishing the top of the quilt and maybe even the boarders. Photos soon!
In the rehab class, a woman named Mary joined over a year ago. She was quiet and nice and the head of the program asked me to chat with her. She would do this if a patient needed me to talk about the program, how it extended my life and offer hope. So, I went over and talked with her, found out she was on prednisone and complained about experiencing the weight gain. I told her about my nutritionist and diet. From that day until now, she seems to avoid me. I always say hello to her when our eyes meet but, that is rare.
Yesterday, the RN took me aside to mention that she advised Mary to talk with me about her impending lung transplants and her difficulties navigating the system at my university hospital. She thought I could help. I am happy to help and I so hope she will feel comfortable enough to talk with me.
This morning, I am running over the pass once again to buy some groceries then home to have additional fun at Safeway. Newly retired Sue and I had planned to meet for lunch today but her husband was in that horrible motorcycle accident on March 11 and was released from the hospital on Monday. Home! His own bed! We postponed our lunch date.
With no lunch date, I am going to spend the afternoon sewing and, hopefully, finishing the top of the quilt and maybe even the boarders. Photos soon!
In the rehab class, a woman named Mary joined over a year ago. She was quiet and nice and the head of the program asked me to chat with her. She would do this if a patient needed me to talk about the program, how it extended my life and offer hope. So, I went over and talked with her, found out she was on prednisone and complained about experiencing the weight gain. I told her about my nutritionist and diet. From that day until now, she seems to avoid me. I always say hello to her when our eyes meet but, that is rare.
Yesterday, the RN took me aside to mention that she advised Mary to talk with me about her impending lung transplants and her difficulties navigating the system at my university hospital. She thought I could help. I am happy to help and I so hope she will feel comfortable enough to talk with me.
Tuesday, March 27, 2018
Waiting for Nothing
The whole day was organized around mom's 2:30 appointment with her glaucoma doctor. We met early, worked on her computer, talked about Shelley's quilt, William's bid on a new house, looked at her drum that she is decorating all before we took a leisurely drive south of PF Chang's for lunch. We ate very slowly and chatted the entire time until we made our way to the doctor's offices. We were about an hour early.
As we checked in, we were told the doctor was running two hours late. WHAT? It would be 4:30 before even seeing her plus they wanted pictures taken so we probably would not be thrown into horrible Silicon Valley rush hour traffic until 6:00.
Mom said no and cancelled the appointment the doctor had made because she wanted to see mom. Oh, and guess what? The doctor had no appointments available through the end of the year. Yes, you read that right.
We made arrangements for her assistant to phone me and we are going to have a chat. Mom is almost blind in one eye because of the macular degeneration so it is vital that the glaucoma is handled well or she will be blind. If the assistant can't fit mom in for an appointment soon, I will ask for another doctor.
We jumped back into the car, dropped mom off at her apartment where she finished painting her drum while Michael and I went shopping for his road trip clothing. After buying two pairs of Levi's, one pair of shorts, new underwear and a nice t-shirt that matched his eyes, we were done. He has other clothes to round out his wardrobe while we are on the road.
Back to rehab for me today. I hope Jeannie's car pool with Barry went well while I was at the retreat last Thursday. She also will be able to access a volunteer car shuttle through her hospice program when I am gone in May. She will have two options so she doesn't miss any rehab while we are on our trip.
As we checked in, we were told the doctor was running two hours late. WHAT? It would be 4:30 before even seeing her plus they wanted pictures taken so we probably would not be thrown into horrible Silicon Valley rush hour traffic until 6:00.
Mom said no and cancelled the appointment the doctor had made because she wanted to see mom. Oh, and guess what? The doctor had no appointments available through the end of the year. Yes, you read that right.
We made arrangements for her assistant to phone me and we are going to have a chat. Mom is almost blind in one eye because of the macular degeneration so it is vital that the glaucoma is handled well or she will be blind. If the assistant can't fit mom in for an appointment soon, I will ask for another doctor.
We jumped back into the car, dropped mom off at her apartment where she finished painting her drum while Michael and I went shopping for his road trip clothing. After buying two pairs of Levi's, one pair of shorts, new underwear and a nice t-shirt that matched his eyes, we were done. He has other clothes to round out his wardrobe while we are on the road.
Back to rehab for me today. I hope Jeannie's car pool with Barry went well while I was at the retreat last Thursday. She also will be able to access a volunteer car shuttle through her hospice program when I am gone in May. She will have two options so she doesn't miss any rehab while we are on our trip.
Monday, March 26, 2018
Not a Normal Sunday
There was six hours of measuring, cutting, sewing and ironing yesterday. It was a lot of fun. I got three rows of Shelley's baby shower gift quilt finished with another nine rows to go! It took a bit for me to remember the process, dust off my cutting board, remember how to load the bobbin on the sewing machine and get everything set up. Once I got rolling, it went really well. I must say that I was really tired and slept like a baby last night.
Before I began working, I phoned Betty and we had a nice chat for an hour. They were on their way to Albuquerque for some fun and lunch. She was dealing with issues with her 98-year old mom and it is a big mess. I am so grateful that my mom is still active and able to take care of her own needs.
William bid on a house and we are waiting to hear if yesterday's offer was accepted. Excited for him! He's already talking about knocking walls down...
Mom has an eye appointment this afternoon so I am meeting Michael at her place afterwards. We will head to the shopping center to wait out the rush hour traffic. A proclamation was made in this house that he not pack any clothing for our trip that has a hole or paint on it. We bought two killer lightweight plaid summer shirts from Filson last week and are planning to buy some new Levi's, shorts and casual tops today.
Michael is definitely feeling better but pushed himself a bit too much Saturday. This morning, he is still dealing with sinus stuff but doesn't feel the pressure. At least his tastebuds have returned to their sensitive levels!
And me? I am feeling so much better, not coughing hardly at all and continuing to use my Aerobika.
Before I began working, I phoned Betty and we had a nice chat for an hour. They were on their way to Albuquerque for some fun and lunch. She was dealing with issues with her 98-year old mom and it is a big mess. I am so grateful that my mom is still active and able to take care of her own needs.
William bid on a house and we are waiting to hear if yesterday's offer was accepted. Excited for him! He's already talking about knocking walls down...
Mom has an eye appointment this afternoon so I am meeting Michael at her place afterwards. We will head to the shopping center to wait out the rush hour traffic. A proclamation was made in this house that he not pack any clothing for our trip that has a hole or paint on it. We bought two killer lightweight plaid summer shirts from Filson last week and are planning to buy some new Levi's, shorts and casual tops today.
Michael is definitely feeling better but pushed himself a bit too much Saturday. This morning, he is still dealing with sinus stuff but doesn't feel the pressure. At least his tastebuds have returned to their sensitive levels!
And me? I am feeling so much better, not coughing hardly at all and continuing to use my Aerobika.
Sunday, March 25, 2018
A Day of Sewing and an Update on Aerobika Device
Sunday morning. It rained then the sun peeked through for a pretty sunrise. The first Formula 1 race of the season, from Australia, is on. New network. New announcers. I am having a hard time with the changes!
Update on the Aerobika device: I find that I am using it in the mornings and often when I get home later in the day. I breath in and out of it properly until it makes me cough then, I give it a good cough and clear mucus comes up. I never have had mucus with my disease so I am assuming this is part of the gunk that I have not been able to clear from the lowest portions of my lungs. I find that I am not coughing as much throughout the day and at night. Often, when I would wake up to use the bathroom, I would cough before my lungs would settle back in again. Now, I don't cough at all. So, I am experiencing immediate improvement and can't wait to see if it continues to reduce my coughing. Rather remarkable.
Yesterday, it took over an hour to find the perfect fabric for Shelley's baby quilt, which will be given to her at the baby shower a couple of days after we get home from the road trip. I remembered that she said the nursery walls will be painted liked the rest of the house, a dove gray, and it would be decorated with "forest creatures." Okay. Find fabric with those perimeters! I will take a photo when it is finished but I really nailed the fabric. The three stripes of each square will feature a dark gray one with leaves and flowers in a lighter gray, a cute pattern of adorable forest creatures in colors of light and dark gray, tan, green, yellow and orange and the final stripe uses all those colors in a geometric pattern. The backing will be a light gray flannel with the word lightly imprinted among flowers and leaves: You are loved. I pre-shrunk all the fabrics and ironed them yesterday so I am ready to begin the work today.
I am a bit worried about mom. She told me she was not feeling well, was tired and sleeping a lot. She also told me that she rammed the long plastic spear of her hair comb through her index finger earlier in the week. Last night, I began to worry about as I hadn't looked at it on Friday. She sometimes lets things like that go and I worry that it may have become infected. So, this morning, I am phoning to find out how it is doing then will suggest we go to Immediate Care tomorrow morning if it appears even a bit red or infected. I want to look at it in either case.
My world today will be cutting, sewing then ironing seams. Fun.
Update on the Aerobika device: I find that I am using it in the mornings and often when I get home later in the day. I breath in and out of it properly until it makes me cough then, I give it a good cough and clear mucus comes up. I never have had mucus with my disease so I am assuming this is part of the gunk that I have not been able to clear from the lowest portions of my lungs. I find that I am not coughing as much throughout the day and at night. Often, when I would wake up to use the bathroom, I would cough before my lungs would settle back in again. Now, I don't cough at all. So, I am experiencing immediate improvement and can't wait to see if it continues to reduce my coughing. Rather remarkable.
Yesterday, it took over an hour to find the perfect fabric for Shelley's baby quilt, which will be given to her at the baby shower a couple of days after we get home from the road trip. I remembered that she said the nursery walls will be painted liked the rest of the house, a dove gray, and it would be decorated with "forest creatures." Okay. Find fabric with those perimeters! I will take a photo when it is finished but I really nailed the fabric. The three stripes of each square will feature a dark gray one with leaves and flowers in a lighter gray, a cute pattern of adorable forest creatures in colors of light and dark gray, tan, green, yellow and orange and the final stripe uses all those colors in a geometric pattern. The backing will be a light gray flannel with the word lightly imprinted among flowers and leaves: You are loved. I pre-shrunk all the fabrics and ironed them yesterday so I am ready to begin the work today.
I am a bit worried about mom. She told me she was not feeling well, was tired and sleeping a lot. She also told me that she rammed the long plastic spear of her hair comb through her index finger earlier in the week. Last night, I began to worry about as I hadn't looked at it on Friday. She sometimes lets things like that go and I worry that it may have become infected. So, this morning, I am phoning to find out how it is doing then will suggest we go to Immediate Care tomorrow morning if it appears even a bit red or infected. I want to look at it in either case.
My world today will be cutting, sewing then ironing seams. Fun.
Friday, March 23, 2018
Retreated From the Retreat
We arrived to the retreat of the PFAC boards at my university hospital early enough to score a seat for Michael away from other humans. He was doing okay, sat through the interesting "conversation" with the big boss of everything. The major guy. The one in charge of everything. He seemed like a good guy. Lots of questions were answered. During a break, Michael said he was feeling worse and left to sit outside in the lobby. I stayed, talked with Jenica, who is on staff and our board, only to learn that her dad passed away two weeks ago of IPF. Familiar IPF.
We had met him and her gorgeous mom here on the coast for a lunch to talk about the anti-fibrotic drugs that were new to the market. He was a very dynamic guy, a big Eastern businessman who retired to a small winery in the Napa Valley.
She talked. I listen. It is so important to tell the story of a death as it helps families to settle it in their bodies. In the end, she felt she had done everything she could for him and said everything she needed to say. It was almost a joyous event, which was so unexpected to her. She also missed the actual death. It was then that I shared that I believe we all choose how we die and who we want to be around us. Clearly, he wanted to spare his children or just didn't want them to see it. Hospice also recommends that family members leave the person dying for 10 minutes every hour to allow a chance to die alone, if that is the wish.
Back to the meeting, we were joined by another big Kahuna in charge of a couple of specific hospitals. He was also a very good guy and only with our university for a year. He was loving the weather here compared to Cleveland, where he use to work. Another good bloke.
After he spoke, they announced it was lunch time and Michael wandered back in while the line was beginning to formed. He was really not well so I said our goodbyes to everyone and we left.
He wanted a "grilled cheese" and a chocolate milk shake at In-N-Out Burgers. Done. For the rest of the day, he was on the new reclining love seat covered with nice blanket and slept. After a light dinner, we were both in bed early, he on the couch.
Right now, he is struggling with sinus pressure and actually just fell asleep on the living room floor. I am leaving him alone to rest today while I spend the day with mom. I haven't been with her for over a week. So much to share!
We had met him and her gorgeous mom here on the coast for a lunch to talk about the anti-fibrotic drugs that were new to the market. He was a very dynamic guy, a big Eastern businessman who retired to a small winery in the Napa Valley.
She talked. I listen. It is so important to tell the story of a death as it helps families to settle it in their bodies. In the end, she felt she had done everything she could for him and said everything she needed to say. It was almost a joyous event, which was so unexpected to her. She also missed the actual death. It was then that I shared that I believe we all choose how we die and who we want to be around us. Clearly, he wanted to spare his children or just didn't want them to see it. Hospice also recommends that family members leave the person dying for 10 minutes every hour to allow a chance to die alone, if that is the wish.
Back to the meeting, we were joined by another big Kahuna in charge of a couple of specific hospitals. He was also a very good guy and only with our university for a year. He was loving the weather here compared to Cleveland, where he use to work. Another good bloke.
After he spoke, they announced it was lunch time and Michael wandered back in while the line was beginning to formed. He was really not well so I said our goodbyes to everyone and we left.
He wanted a "grilled cheese" and a chocolate milk shake at In-N-Out Burgers. Done. For the rest of the day, he was on the new reclining love seat covered with nice blanket and slept. After a light dinner, we were both in bed early, he on the couch.
Right now, he is struggling with sinus pressure and actually just fell asleep on the living room floor. I am leaving him alone to rest today while I spend the day with mom. I haven't been with her for over a week. So much to share!
Thursday, March 22, 2018
Germs Abound
I stayed home all day yesterday, organized the cabinets in the kitchen, filed paperwork and was taking a nap when Michael stumbled into the house. He was not feeling well. He thought he was just stuffed up, as he does have allergy issues, but he realized that this was different. Two night ago, I gave him an antihistamine to help him sleep, he slept great but it didn't help the sneezing and sinus issues too much. Odd. Always worked for me.
So last night, I gave him my nighttime cocktail of drugs in Aprodine, when I could get it. He reported that he was awake every two hours throughout the night. That happened to me, too if I take it more than two nights in a row. AND, he is still stuffy this morning.
Today, we have the retreat with the rest of the PFAC board members at my university hospital in the city. Approximately 200 people will be in a large auditorium together, we will work on a project then break for a nice lunch. Always interesting. It is pouring and is expected to continue all day, there are lots of accidents on the freeways right now and I an expecting an exciting/terrifying drive this morning. Michael? He is going so I don't have to drive but he will be sitting alone in the back of the large auditorium, away from the humans.
An aside, I took both drugs last night as I thought I was feeling a bit of his cold coming on. I slept like a baby and I think it kicked it out of me. Coldcalm will continue throughout today and, hopefully, I have stopped anything from taking hold in my newly recovering body.
In baby news: My niece's baby shower is two days after we get home from the 7,000 mile road trip. Back in the car for hours. I know I will be totally exhausted but I want to do it for mom. She is so excited about this new little girl joining our family and thrilled that she has lived long enough to meet her. What she doesn't know is that Shelley and Russ are using mom's name as the baby's middle name. Mom will be so touched. I won't say a word so they see the joy on her face when they tell her. Shhhh...it's a secret until then!
So last night, I gave him my nighttime cocktail of drugs in Aprodine, when I could get it. He reported that he was awake every two hours throughout the night. That happened to me, too if I take it more than two nights in a row. AND, he is still stuffy this morning.
Today, we have the retreat with the rest of the PFAC board members at my university hospital in the city. Approximately 200 people will be in a large auditorium together, we will work on a project then break for a nice lunch. Always interesting. It is pouring and is expected to continue all day, there are lots of accidents on the freeways right now and I an expecting an exciting/terrifying drive this morning. Michael? He is going so I don't have to drive but he will be sitting alone in the back of the large auditorium, away from the humans.
An aside, I took both drugs last night as I thought I was feeling a bit of his cold coming on. I slept like a baby and I think it kicked it out of me. Coldcalm will continue throughout today and, hopefully, I have stopped anything from taking hold in my newly recovering body.
In baby news: My niece's baby shower is two days after we get home from the 7,000 mile road trip. Back in the car for hours. I know I will be totally exhausted but I want to do it for mom. She is so excited about this new little girl joining our family and thrilled that she has lived long enough to meet her. What she doesn't know is that Shelley and Russ are using mom's name as the baby's middle name. Mom will be so touched. I won't say a word so they see the joy on her face when they tell her. Shhhh...it's a secret until then!
Wednesday, March 21, 2018
Aerobika
Here it is. My newest device to help move the air in the lowest part of my lungs. Hopefully, it will clear the fluids out of there along with any bacteria that can cause infections, i.e. bronchitis and pneumonia. I met with Lori, the respiratory therapist in my rehab program, before class yesterday. Apparently, this is a relatively new device, which she had distributed to all the patients in the hospital who had lung issues. She said it is the "newest and best."She demonstrated how to set the device and that I should use it when I felt I needed it rather than any specific time everyday. For example, in the mornings after lying in bed all night. She also warned me that she actually gets dizzy and that I should be seated when I use it.
It is important to have a good seal on the mouthpiece and to blow so it is felt in the chest. It was a strange sensation. It actually felt pretty good and I can understand how it would help clear the airways. She also told me to remember to do three good huff coughs to clear any mucus after using the device.
It is important to wash it, specifically the mouthpiece, but the entire device is dishwasher safe.
Again, check it out online and ask your doctor if this is something you should consider.
Tuesday, March 20, 2018
All Good News
It was the giggling that made me smile. Michael phoned after he and mom arrived at her university hospital and were waiting for her Prolia shot. They had become lost inside the hospital but someone rescued them! Michael was laughing when he was telling me and I could hear mom giggling in the background. They were having a good time together, as always. She was in good hands! He was having a good time with her! A win-win all around.
My drive deep into the city was seamless and I even stopped at the nutritionist's office to make an appointment. I was shocked to discover I had not checked in with him since last August! I am doing fine but it is still good to see him at least once a year. And, as it turned out, I am seeing him just two weeks after our road trip! It will keep me honest during the trip.
Arriving to the dermatologist's office almost an hour early, I was in and out before my scheduled appointment! Love that. She took one look at my bump and said it was a weird scab trying to form. Leave it alone and it will go away. Okay. No cancer. Good news. But, she spotted two other spots on my legs and used her little freezing torch to zap them.
Today, back to rehab class where I will learn how to use my new device that Dr. K gave me last week. I will report back on that tomorrow.
My drive deep into the city was seamless and I even stopped at the nutritionist's office to make an appointment. I was shocked to discover I had not checked in with him since last August! I am doing fine but it is still good to see him at least once a year. And, as it turned out, I am seeing him just two weeks after our road trip! It will keep me honest during the trip.
Arriving to the dermatologist's office almost an hour early, I was in and out before my scheduled appointment! Love that. She took one look at my bump and said it was a weird scab trying to form. Leave it alone and it will go away. Okay. No cancer. Good news. But, she spotted two other spots on my legs and used her little freezing torch to zap them.
Today, back to rehab class where I will learn how to use my new device that Dr. K gave me last week. I will report back on that tomorrow.
Monday, March 19, 2018
Little Red Bump
I was exhausted Saturday after gig #2 and its three-hour program. Word from the Irish Fiddling group regarding gig #3 on Saturday night was that it went very well. I was in bed asleep while they were playing! Yesterday, Michael and I picked up my new glasses, bought groceries then did nothing but hang around the house. It felt great and I am ready for the week ahead.
Today, Michael is in-charge of my mom. She has an appointment for her Prolia shot and I bet they go to lunch afterwards. I, on the other hand, finally am seeing my wonderful dermatologist to have a biopsy on the little red bump on my left leg. It is the same spot that she blasted two years ago and again in December. It just hasn't healed properly and now there is a little red bump that looks like a small pimple and hurts when pressed. With experience, I know it is a bit of cancer. Hopefully, it is the same minor stuff I have had in the past as one of my drugs does not protect me from the harmful rays of the sun. Not the best photo but it shows where the red bump broke through the scab.
Before heading to the far reaches of the city, I need to mail some bills and buy a few items at Safeway this morning. Michael and I will meet back at our house late this afternoon for a simple dinner of a Greek lamb burger over a Greek salad. He was wanting some Greek food this week.
Lots of driving today, no rain expected and hopefully both doctor's appointments will go as expected. Just another exciting Monday!
Today, Michael is in-charge of my mom. She has an appointment for her Prolia shot and I bet they go to lunch afterwards. I, on the other hand, finally am seeing my wonderful dermatologist to have a biopsy on the little red bump on my left leg. It is the same spot that she blasted two years ago and again in December. It just hasn't healed properly and now there is a little red bump that looks like a small pimple and hurts when pressed. With experience, I know it is a bit of cancer. Hopefully, it is the same minor stuff I have had in the past as one of my drugs does not protect me from the harmful rays of the sun. Not the best photo but it shows where the red bump broke through the scab.Before heading to the far reaches of the city, I need to mail some bills and buy a few items at Safeway this morning. Michael and I will meet back at our house late this afternoon for a simple dinner of a Greek lamb burger over a Greek salad. He was wanting some Greek food this week.
Lots of driving today, no rain expected and hopefully both doctor's appointments will go as expected. Just another exciting Monday!
Saturday, March 17, 2018
All Gigged Out
I am feeling it this morning. My voice is hoarse from talking over the din of so many happy people listening to some good Irish music and lifting a wee bit of liquid refreshments. The place was packed for the group's second of three back-to-back gigs. I am sitting out tonight's gig. I am done. I am tired. I am staying in all day.
To prepare for last night's three-hour gig, I took a two hour morning nap, went out and ate an excellent lunch of fresh fish prepared in a pan then served on a bun topped with red cabbage and later, some pick-me-up espresso around 3PM. I had just half of a chicken breast for dinner before heading up to the harbor and the brewery.
My bass loved the cement floor and the glass walls. No microphone was needed in order to be heard. It just rang. The crowd was quieter and polite until about the second hour and they were fueled up. It got wild with lots of people dancing and singing and participating with us. Neighbor Ron came by for half a set and asked when we were going to play Mozart! Funny.
It was the most fun I have experienced playing with this group. The audience was totally enjoying us. One man kept insisting that we should travel around the country and just play. We should go pro, he kept saying. Right.
Tonight is at a larger venue with people enjoying Corned Beef and Cabbage and lifting their beers or Irish whiskey. The room will be packed with long tables so there will probably not be a lot of dancing. It is not my most favorite venue so I am not feeling sad that I am missing out. But, I will be thinking of the group playing for just an hour. It will be an easier night and I just can't imagine that it will be as much fun as last night!
To prepare for last night's three-hour gig, I took a two hour morning nap, went out and ate an excellent lunch of fresh fish prepared in a pan then served on a bun topped with red cabbage and later, some pick-me-up espresso around 3PM. I had just half of a chicken breast for dinner before heading up to the harbor and the brewery.
My bass loved the cement floor and the glass walls. No microphone was needed in order to be heard. It just rang. The crowd was quieter and polite until about the second hour and they were fueled up. It got wild with lots of people dancing and singing and participating with us. Neighbor Ron came by for half a set and asked when we were going to play Mozart! Funny.
It was the most fun I have experienced playing with this group. The audience was totally enjoying us. One man kept insisting that we should travel around the country and just play. We should go pro, he kept saying. Right.
Tonight is at a larger venue with people enjoying Corned Beef and Cabbage and lifting their beers or Irish whiskey. The room will be packed with long tables so there will probably not be a lot of dancing. It is not my most favorite venue so I am not feeling sad that I am missing out. But, I will be thinking of the group playing for just an hour. It will be an easier night and I just can't imagine that it will be as much fun as last night!
Friday, March 16, 2018
Rest Between Two Gigs
Gig #1 went really well last night. There was a sweet audience who paid attention to us and participated. It was just the five of us performing instead of seven and it will be the same grouping tonight due to the contract. Tonight. Gig #2. Three hours of Irish Fiddling, lots of singing and hopefully, some members of the audience will feel like dancing! We will be at a brewery for the first time ever.
I feel okay but I think a morning nap is going to happen and I want to take myself out to lunch as dinner will be very tiny this evening. Nap, shower, lunch, CVS. Mom and I are usually together on Fridays but I knew that these gigs would wear me down. It was best to stay home to prepare for tonight.
What I am grateful for is that I decided not to play gig #3 on Saturday night. Smart move because I think it would have totally exhausted me and left me open for another illness.
Rehab class felt fantastic. I felt great afterwards and it geared me up for the gig last night. It turned out that the woman who runs the educational/workout part of the rehab program was a respiratory therapist! We connected and agreed to meet before my class next Tuesday so she could set my new device and show me how to use it. The Aerobika.
My goal is a quiet weekend. I think I may look for fabric to make a little quilt for my niece's baby due early this summer. I've got to get going on that.
I feel okay but I think a morning nap is going to happen and I want to take myself out to lunch as dinner will be very tiny this evening. Nap, shower, lunch, CVS. Mom and I are usually together on Fridays but I knew that these gigs would wear me down. It was best to stay home to prepare for tonight.
What I am grateful for is that I decided not to play gig #3 on Saturday night. Smart move because I think it would have totally exhausted me and left me open for another illness.
Rehab class felt fantastic. I felt great afterwards and it geared me up for the gig last night. It turned out that the woman who runs the educational/workout part of the rehab program was a respiratory therapist! We connected and agreed to meet before my class next Tuesday so she could set my new device and show me how to use it. The Aerobika.
My goal is a quiet weekend. I think I may look for fabric to make a little quilt for my niece's baby due early this summer. I've got to get going on that.
Thursday, March 15, 2018
Check it Out - Aerobika
What a satisfying day. It seems that the glasses can be adjusted to stay up on my nose as well as away from my eye lashes all at the same time! I did choose to have new lenses made that are trifocals as I will be able to read music easier, I think. Hopefully.
Dr. K. was in a very good mood. We reviewed my visit to the ER in February, how I handled the after visit with my primary doctor also how and when I returned to rehab. Telling her about the road trip in May, she ordered some antibiotics to take with me. If I do begin to get sick, it will save an entire day at an ER and, since they are so careful giving out antibiotics these days, they may not understand that I need antibiotics at the first sign of an infection or BOOM it goes into pneumonia.
Regarding beginning the reduction of prednisone from 15mgs to 12.5mgs recommended by the Lung Transplant Clinic, she immediately rejected it. We had tried it and the coughing was...she had a perfect word for it, which I can't remember. Impossible to live with. She wrote that 15mgs was within the guidelines for lung transplants. We are staying put.
When I was on the antibiotics after the ER visit, I had no cough. No wheeze at night. No cough ever. Slowly, a cough has returned. It is not too often but it is there. I told her about how wonderful it felt just after the antibiotics but the insipid cough began to slowly creep back. I asked her if I am going to have a constant low form of bronchitis or pneumonia? She told me that I am having problems clearing the deepest part of my bronchi. She suddenly jumped up and out of the room only to return with a device called a Aerobika. Then she said, "You go to rehab. They must know/have a Respiratory Therapist involved with the program who can demonstrate how to use it." I am bringing it to rehab today to ask if I can meet with an RT so I don't have to go back to the city. It is a device that should be used to clear the airways (and mucus, which is not an issue for me) by using it two times a day for 15-20 minutes. It seems to use pressure to work. No batteries. It is about the size of my hand, light and comes apart in four pieces, which need to be washed everyday. Look it up online. There are even a few YouTube videos demonstrating how it works, one is HERE. If you think it might help, ask your doctor about it. After I have it properly set, I will use it and report back to you.
Dr. K. was in a very good mood. We reviewed my visit to the ER in February, how I handled the after visit with my primary doctor also how and when I returned to rehab. Telling her about the road trip in May, she ordered some antibiotics to take with me. If I do begin to get sick, it will save an entire day at an ER and, since they are so careful giving out antibiotics these days, they may not understand that I need antibiotics at the first sign of an infection or BOOM it goes into pneumonia.
Regarding beginning the reduction of prednisone from 15mgs to 12.5mgs recommended by the Lung Transplant Clinic, she immediately rejected it. We had tried it and the coughing was...she had a perfect word for it, which I can't remember. Impossible to live with. She wrote that 15mgs was within the guidelines for lung transplants. We are staying put.
When I was on the antibiotics after the ER visit, I had no cough. No wheeze at night. No cough ever. Slowly, a cough has returned. It is not too often but it is there. I told her about how wonderful it felt just after the antibiotics but the insipid cough began to slowly creep back. I asked her if I am going to have a constant low form of bronchitis or pneumonia? She told me that I am having problems clearing the deepest part of my bronchi. She suddenly jumped up and out of the room only to return with a device called a Aerobika. Then she said, "You go to rehab. They must know/have a Respiratory Therapist involved with the program who can demonstrate how to use it." I am bringing it to rehab today to ask if I can meet with an RT so I don't have to go back to the city. It is a device that should be used to clear the airways (and mucus, which is not an issue for me) by using it two times a day for 15-20 minutes. It seems to use pressure to work. No batteries. It is about the size of my hand, light and comes apart in four pieces, which need to be washed everyday. Look it up online. There are even a few YouTube videos demonstrating how it works, one is HERE. If you think it might help, ask your doctor about it. After I have it properly set, I will use it and report back to you.
Wednesday, March 14, 2018
Hello, Dr. K.!
Yesterday went so much better than the day before! Jeannie and I had a good workout at rehab, I made a simple dinner of Whopper in a Bowl (salad) followed by an intense Irish Fiddling rehearsal. We are ready for the three gigs at the end of the week.
Today, is going to be busy. I must be out the door early to be at Costco when they open. The new glasses just are not working. When I push them up my nose, my eyelashes hit the glass and makes it dirty so even tightening them won't work. I am going to start all over and buy a new pair today. Ugh!
Then, off I drive into the city to see Dr. K., my life-saving pulmonologist. She is going to want to talk about my meetings with the heads of the ILD Clinic and the Lung Transplant Clinics regarding my failed Nissen fundoplication. I am also expecting that we begin an experiment to step down my prednisone from 15mgs to 12.5mgs. The concern is increased coughing so I will ask if there is something that can help with calming it down. Probably nothing, but I will ask anyway.
Today, is going to be busy. I must be out the door early to be at Costco when they open. The new glasses just are not working. When I push them up my nose, my eyelashes hit the glass and makes it dirty so even tightening them won't work. I am going to start all over and buy a new pair today. Ugh!
Then, off I drive into the city to see Dr. K., my life-saving pulmonologist. She is going to want to talk about my meetings with the heads of the ILD Clinic and the Lung Transplant Clinics regarding my failed Nissen fundoplication. I am also expecting that we begin an experiment to step down my prednisone from 15mgs to 12.5mgs. The concern is increased coughing so I will ask if there is something that can help with calming it down. Probably nothing, but I will ask anyway.
Tuesday, March 13, 2018
Day of Problems
The entire day, nothing went smoothly. After awhile, mom and I just had to laugh. It began at Walgreens where she was upset that she could not get the doctor prescribed amount of glaucoma drops for her eyes and also that she was unaware that her insurance changed to where she had to reach a deductible. We leaned that the insurance company would only approve 10 ml at a time no matter what the doctor ordered. That was new to us and it explained all the problems she was having but she still did not understand it. It took a long conversation in the car for it all to make sense to her. Problem #1.
To the post office next, which was right next to the AAA office. There was a long line of cars entering the parking lot and others trying to leave while we just wanted to swing by the mailbox to mail my bills. Finally, while avoiding two accidents, we made our way out of that parking lot into the AAA parking lot next door.
We were there to pay for the DMV renewal tags for the car we are driving on the road trip. The disability spots were all taken and we had to park and hike in from the back 40 acres - it felt that far away. Problem #2. We were about three people from the front of the line yet it took an hour of standing. Problem #3. While waiting, I looked into my purse and found that I had missed a bill to be mailed. Problem #4.
Finally free of AAA, we drove back to the post office parking lot and mailed the found bill. We began to realize it was not going to be a normal day. With hope for better luck, we drove to Costco to pick up my glasses. I shall not go into the details about how long that line was and the woman who helped me with her coughing and sneezing, but I am either having the glasses greatly tightened so they don't hang down my nose or I am buying a whole new pair. Hate them. Problem #5.
It was well after noon when we headed to Chili's for lunch. Pulling into the parking lot behind two cars, I watched as each parked in the only two remaining disability spots. (My mom is disabled, too.) We chalked it up to the day's bad luck. We found the lunch menu for the first time ever, chose the soup and the two chicken tacos. But, guess what? Our favorite waitress warned us that the systems were down at all the Chili's. Of course they were! Problem #6. We told her of our day and warned her that our order was going to be lost in the kitchen! Guess what? There was a hangup in the kitchen and lunch arrived after a long wait and when it did arrive, I got the wrong item. Problem #7. We laughed with the waitress that we had warned her! It was us! She refused to give us a bill. A free lunch. I handed her a very large tip and she got a hug from both of us.
Somehow I got home without a problem. But, what a day! I hope this cloud of problems has lifted and I make it through the day and the evening Irish Fiddling rehearsal unscathed.
To the post office next, which was right next to the AAA office. There was a long line of cars entering the parking lot and others trying to leave while we just wanted to swing by the mailbox to mail my bills. Finally, while avoiding two accidents, we made our way out of that parking lot into the AAA parking lot next door.
We were there to pay for the DMV renewal tags for the car we are driving on the road trip. The disability spots were all taken and we had to park and hike in from the back 40 acres - it felt that far away. Problem #2. We were about three people from the front of the line yet it took an hour of standing. Problem #3. While waiting, I looked into my purse and found that I had missed a bill to be mailed. Problem #4.
Finally free of AAA, we drove back to the post office parking lot and mailed the found bill. We began to realize it was not going to be a normal day. With hope for better luck, we drove to Costco to pick up my glasses. I shall not go into the details about how long that line was and the woman who helped me with her coughing and sneezing, but I am either having the glasses greatly tightened so they don't hang down my nose or I am buying a whole new pair. Hate them. Problem #5.
It was well after noon when we headed to Chili's for lunch. Pulling into the parking lot behind two cars, I watched as each parked in the only two remaining disability spots. (My mom is disabled, too.) We chalked it up to the day's bad luck. We found the lunch menu for the first time ever, chose the soup and the two chicken tacos. But, guess what? Our favorite waitress warned us that the systems were down at all the Chili's. Of course they were! Problem #6. We told her of our day and warned her that our order was going to be lost in the kitchen! Guess what? There was a hangup in the kitchen and lunch arrived after a long wait and when it did arrive, I got the wrong item. Problem #7. We laughed with the waitress that we had warned her! It was us! She refused to give us a bill. A free lunch. I handed her a very large tip and she got a hug from both of us.
Somehow I got home without a problem. But, what a day! I hope this cloud of problems has lifted and I make it through the day and the evening Irish Fiddling rehearsal unscathed.
Monday, March 12, 2018
No Day of Rest
I had not been sleeping well but after yesterday, I slept like a baby! It was a wild day. Non-stop. I need a day off!
We showered and were out the door early enough to be the first people at the vision counter at Costco to pick up my contact lenses and Michael's sunglasses. My glasses are due in today. We then bought a gorgeous rack of lamb at our butcher's before buying food for the week at Trader Joe's. Michael needed to swing by a friend's shop to pick up a few things before we split a lunch that was spectacular. It was in a dive. Love those. We split at shredded chicken quesadillas, which held us through the afternoon.
Michael continued his fight against the stump in the side planter box while I worked on our road trip. Everything fell into place as I made the final six hotel reservations except for one blip. At the beginning of the process, I contacted my brother to make sure the university in his town was not having graduation when we planned to be there. No problem, the graduation was going to be a week after our visit. Well, yesterday I tried to make reservations at two of the best hotels in town, which really isn't saying much. There are no really good hotels in his town but these are the top of the heap. They were booked. Both of them. I tried another hotel but Betty told me that it was used as a resident hotel and not where we would want to stay. Only one other one was not horrible. I tried and was able to book the last room they had available.
It bothered my brother that the other hotels were booked. We are talking about a tiny town, tourist town, a place where people stop on their way to somewhere else. He investigated and learned that Homeland Security was having meetings and practice in his town on the days we will be there, thus the hotels were booked.
Several hours later, I was finished booking the reservations and printing copies of the confirmations. I then made a list of the date, destination, how many miles and time to be traveled per day, address of the hotel, confirmation number, driving directions with maps, who we will be visiting and their contact information all to be printed out and the confirmation will be paper clipped to the matching information sheet. There were four pages with the title of: Final Farewell Trip #4.
So, we will pull one of the four pages with the confirmations for the next few days of the trip then bring the next day's with us into the hotel room so we can study the next day's travels. Then, we can toss the used ones as we go. We also carry a manila envelope to hold our hotel bills and any other paper we wish to save. On the envelope, we write the date, the amount of gas and the price per gallon we buy that day, the cost of lunch and where we ate then the cost of dinner and where we ate. It has been so helpful years later when we just couldn't remember the name of a hotel or a restaurant. We also list the state we travel through. On the final stretch of the trip, we list our favorite food, experience, our least favorite food, least favorite experience. It is fun.
While I am in the middle of all of that yesterday, Natalie asked if I wanted to see an one house in my neighborhood with them. Wouldn't it be great to have the kids swing by for a visit on their bikes? The house was fantastic but the market here is intense. We will see.
Today, it is back to Costco for my glasses, AAA to get the tags for the road trip car and a nice lunch with mom! This is a busy week for those of us in the Irish Fiddling world. Rehearsal will be Tuesday evening, a gig at a Wine and Cheese store will be Thursday evening and the big 3-hour gig will be at a restaurant/brewery on Friday night. I will need plenty of fuel and sleep and caffeine. I am not playing the actual St. Patrick's Day gig as it would be too much for the newly recovered me.
We showered and were out the door early enough to be the first people at the vision counter at Costco to pick up my contact lenses and Michael's sunglasses. My glasses are due in today. We then bought a gorgeous rack of lamb at our butcher's before buying food for the week at Trader Joe's. Michael needed to swing by a friend's shop to pick up a few things before we split a lunch that was spectacular. It was in a dive. Love those. We split at shredded chicken quesadillas, which held us through the afternoon.
Michael continued his fight against the stump in the side planter box while I worked on our road trip. Everything fell into place as I made the final six hotel reservations except for one blip. At the beginning of the process, I contacted my brother to make sure the university in his town was not having graduation when we planned to be there. No problem, the graduation was going to be a week after our visit. Well, yesterday I tried to make reservations at two of the best hotels in town, which really isn't saying much. There are no really good hotels in his town but these are the top of the heap. They were booked. Both of them. I tried another hotel but Betty told me that it was used as a resident hotel and not where we would want to stay. Only one other one was not horrible. I tried and was able to book the last room they had available.
It bothered my brother that the other hotels were booked. We are talking about a tiny town, tourist town, a place where people stop on their way to somewhere else. He investigated and learned that Homeland Security was having meetings and practice in his town on the days we will be there, thus the hotels were booked.
Several hours later, I was finished booking the reservations and printing copies of the confirmations. I then made a list of the date, destination, how many miles and time to be traveled per day, address of the hotel, confirmation number, driving directions with maps, who we will be visiting and their contact information all to be printed out and the confirmation will be paper clipped to the matching information sheet. There were four pages with the title of: Final Farewell Trip #4.
So, we will pull one of the four pages with the confirmations for the next few days of the trip then bring the next day's with us into the hotel room so we can study the next day's travels. Then, we can toss the used ones as we go. We also carry a manila envelope to hold our hotel bills and any other paper we wish to save. On the envelope, we write the date, the amount of gas and the price per gallon we buy that day, the cost of lunch and where we ate then the cost of dinner and where we ate. It has been so helpful years later when we just couldn't remember the name of a hotel or a restaurant. We also list the state we travel through. On the final stretch of the trip, we list our favorite food, experience, our least favorite food, least favorite experience. It is fun.
While I am in the middle of all of that yesterday, Natalie asked if I wanted to see an one house in my neighborhood with them. Wouldn't it be great to have the kids swing by for a visit on their bikes? The house was fantastic but the market here is intense. We will see.
Today, it is back to Costco for my glasses, AAA to get the tags for the road trip car and a nice lunch with mom! This is a busy week for those of us in the Irish Fiddling world. Rehearsal will be Tuesday evening, a gig at a Wine and Cheese store will be Thursday evening and the big 3-hour gig will be at a restaurant/brewery on Friday night. I will need plenty of fuel and sleep and caffeine. I am not playing the actual St. Patrick's Day gig as it would be too much for the newly recovered me.
Sunday, March 11, 2018
Coffee Chat
It was a day of memories and helping a dear friend all over a really good cup of coffee. Natalie and I met at 10:30 at a very cool "pour-over" coffee shop with comfortable seats for us to settle into. That we did for three hours!
Natalie and I met through my middle school music teacher who had accepted a position at a high school. They both completed their Masters degree at the Conservatory of Music. She had never formally taught before. I hired her because the children were drawn to her and that she was one smart cookie. She changed my life. After I got sick, we continued our friendship. She had Winnie, she and her husband bought a house in our little town and then they had Oliver. Apparently, both kids were very unhappy that they were not seeing me with their mom yesterday. My fan club! I did make up little bags of good Easter candies just so they would know I was thinking of them.
She needed my advice. We talked business: creating, producing, dealing with administrations, teaching and hiring in a music program. I think I helped. After that was settled, then we just talked. She looked marvelous, Weight Watchers was working for her, and she seems to have figured out a lot of life's issues. I am very proud of her.
At home, I was able to complete a lot of my to-do list for the day and fell into bed feeling like it was an interesting, successful day. Today, we are off to Costco to pick up our glasses then we will buy groceries for the week. Not as much fun as yesterday.
Natalie and I met through my middle school music teacher who had accepted a position at a high school. They both completed their Masters degree at the Conservatory of Music. She had never formally taught before. I hired her because the children were drawn to her and that she was one smart cookie. She changed my life. After I got sick, we continued our friendship. She had Winnie, she and her husband bought a house in our little town and then they had Oliver. Apparently, both kids were very unhappy that they were not seeing me with their mom yesterday. My fan club! I did make up little bags of good Easter candies just so they would know I was thinking of them.
She needed my advice. We talked business: creating, producing, dealing with administrations, teaching and hiring in a music program. I think I helped. After that was settled, then we just talked. She looked marvelous, Weight Watchers was working for her, and she seems to have figured out a lot of life's issues. I am very proud of her.
At home, I was able to complete a lot of my to-do list for the day and fell into bed feeling like it was an interesting, successful day. Today, we are off to Costco to pick up our glasses then we will buy groceries for the week. Not as much fun as yesterday.
Friday, March 9, 2018
Plans Fell into Place
I survived! What a day! Yesterday, we were both up and out early as the housekeepers were due, I needed to stop at CVS and get some gas before my hair appointment. From hair to Jeannie just a block away, we arrived to rehab early to a nice surprise.
Rob, who had his lung transplants in October, was back in the class before us for the first time and will re-join our class in four weeks. The last time I had seen him, he was extremely underweight, newly out of the hospital from an infection and waiting for lungs. Yesterday, I had walked into his class to fill Jeannie's water bottle for her, we spotted each other and he came over to speak with me. Hug or not to hug? I have always heard that you don't hug newly transplanted patients as they are on prednisone and other drugs and rather vulnerable to infections. He hugged me! I was really surprised.
For the transplants, he was in the hospital for thirteen days and also confirmed, what I had heard from others, that he had no pain other than at the surgery site, which ended up becoming infected. He needed surgery to clean it up, they set up the "snake-like" wound vac then he healed completely.
He was back to work. Isn't that amazing? He said he had his life back. In another month, he will be allowed to write the donor family. Already, he has joined a group at his hospital to work with other people and feels a huge need to treat this gift responsibly.
Jeannie and I worked out in our class, left early so Michael and I were able to arrive to our PFAC board meeting at my university hospital right on time. Again, I can't discuss anything from the meeting but we left once again, feeling like we contributed to the beginning of the process to fix two large problems.
Today, mom has her shot in her eye then we will go to lunch somewhere. As she said, going to her eye clinic is like going to visit friends. When we are spotted, the staff will come into the waiting room to hug her and to say hello. She loves it so much that she isn't bothered by the actual shot in her eye!
Rob, who had his lung transplants in October, was back in the class before us for the first time and will re-join our class in four weeks. The last time I had seen him, he was extremely underweight, newly out of the hospital from an infection and waiting for lungs. Yesterday, I had walked into his class to fill Jeannie's water bottle for her, we spotted each other and he came over to speak with me. Hug or not to hug? I have always heard that you don't hug newly transplanted patients as they are on prednisone and other drugs and rather vulnerable to infections. He hugged me! I was really surprised.
For the transplants, he was in the hospital for thirteen days and also confirmed, what I had heard from others, that he had no pain other than at the surgery site, which ended up becoming infected. He needed surgery to clean it up, they set up the "snake-like" wound vac then he healed completely.
He was back to work. Isn't that amazing? He said he had his life back. In another month, he will be allowed to write the donor family. Already, he has joined a group at his hospital to work with other people and feels a huge need to treat this gift responsibly.
Jeannie and I worked out in our class, left early so Michael and I were able to arrive to our PFAC board meeting at my university hospital right on time. Again, I can't discuss anything from the meeting but we left once again, feeling like we contributed to the beginning of the process to fix two large problems.
Today, mom has her shot in her eye then we will go to lunch somewhere. As she said, going to her eye clinic is like going to visit friends. When we are spotted, the staff will come into the waiting room to hug her and to say hello. She loves it so much that she isn't bothered by the actual shot in her eye!
Thursday, March 8, 2018
Back to Back to Back Today
It was such fun to chat with Sue for over two hours yesterday and we made plans to meet again for lunch next time. Then, I spent the afternoon on the phone with Anna to talk about their stay with us during our road trip then about everything else going on within the family. Two hours later, we vowed to continue another day as we had not finished!
The madness of today begins within an hour. I must be out the door with the house ready for the housekeepers to my hair appointment before I pick Jeannie up for our rehab class. We plan to leave early from the class then quickly drive to the city with Michael for the university hospital's board meeting. Dinner will be served, thank goodness! It is going to be a long day.
I am beginning to stress over everything that needs to be done for the trip and really worry that I will overlook something important, like the mortgage payment! Lists on lists are being made.
Fortunately, my stamina is really good at the moment. I am feeling stronger and filled with energy. We realized that I had pneumonia for a long time as I was dealing with that "wall of exhaustion" everyone said was just part of the downhill of my disease. I feel I am back and still pressing for more.
The madness of today begins within an hour. I must be out the door with the house ready for the housekeepers to my hair appointment before I pick Jeannie up for our rehab class. We plan to leave early from the class then quickly drive to the city with Michael for the university hospital's board meeting. Dinner will be served, thank goodness! It is going to be a long day.
I am beginning to stress over everything that needs to be done for the trip and really worry that I will overlook something important, like the mortgage payment! Lists on lists are being made.
Fortunately, my stamina is really good at the moment. I am feeling stronger and filled with energy. We realized that I had pneumonia for a long time as I was dealing with that "wall of exhaustion" everyone said was just part of the downhill of my disease. I feel I am back and still pressing for more.
Wednesday, March 7, 2018
Dear Friends
Last night's Irish Fiddling rehearsal flew by as we prepared for three St. Patrick's Day gigs. I am only playing two of them but one is three hours long! That will be a challenge! I almost fell asleep walking the few steps home as it had been a long day. Jeannie and I worked out hard at the rehab class and both of us felt great afterwards.
The other rehab closes next week. The physical therapists who did not quit have joined us in the space right next to our rehab class and I am seeing and saying hello to many of them. They feel lost and homeless as their space was closed so suddenly. We have a new RN running our class beginning next week, whom I knew from the other rehab, and I think our class with eventually like her. They are not happy with the changes of the reduction of time that our current staff will be working with us. One woman asked me to edit a letter she had written to the administration asking for the current staff to remain. I know the changes were due to seniority issues and nothing personal but, I heavily edited her letter, she loved it and was going to be sent today.
This morning, I am having coffee with my dear friend Sue, whom I met when our children were in kindergarten. Recently retired, we have vowed to meet every couple of months for a good chat. She is originally from Boston and her accent is part of her charm. Dear friends are the best.
Another dear friend is planning to retire this summer. Barbara went to school with Michael! He even remembers her walking down a hallway and what she was wearing. She and her former husband moved near us years ago, my sister lived in the same city and Barbara ended up starting an exceptional daycare in her home. My niece Shelley was her first daycare kid as an infant. Forty years later, she is retiring this summer and planning a road trip. We need to connect to help map her trip.
This afternoon, I am going to finish making the reservations for our May trip, will talk with Anna regarding their stay at our house while we are gone and make a call to Medicare. I still have money from my Worker's Comp settlement that is for specific lung issues only. They refused to pay for my recent endoscopy because I still have money in that account but that had to due with acid reflux issues not specifically with my lungs. They will instruct me to have my university hospital re-bill them stating that fact and all will be paid. This happens often.
The other rehab closes next week. The physical therapists who did not quit have joined us in the space right next to our rehab class and I am seeing and saying hello to many of them. They feel lost and homeless as their space was closed so suddenly. We have a new RN running our class beginning next week, whom I knew from the other rehab, and I think our class with eventually like her. They are not happy with the changes of the reduction of time that our current staff will be working with us. One woman asked me to edit a letter she had written to the administration asking for the current staff to remain. I know the changes were due to seniority issues and nothing personal but, I heavily edited her letter, she loved it and was going to be sent today.
This morning, I am having coffee with my dear friend Sue, whom I met when our children were in kindergarten. Recently retired, we have vowed to meet every couple of months for a good chat. She is originally from Boston and her accent is part of her charm. Dear friends are the best.
Another dear friend is planning to retire this summer. Barbara went to school with Michael! He even remembers her walking down a hallway and what she was wearing. She and her former husband moved near us years ago, my sister lived in the same city and Barbara ended up starting an exceptional daycare in her home. My niece Shelley was her first daycare kid as an infant. Forty years later, she is retiring this summer and planning a road trip. We need to connect to help map her trip.
This afternoon, I am going to finish making the reservations for our May trip, will talk with Anna regarding their stay at our house while we are gone and make a call to Medicare. I still have money from my Worker's Comp settlement that is for specific lung issues only. They refused to pay for my recent endoscopy because I still have money in that account but that had to due with acid reflux issues not specifically with my lungs. They will instruct me to have my university hospital re-bill them stating that fact and all will be paid. This happens often.
Tuesday, March 6, 2018
Checking In
Mom and I ran errands before a nice lunch yesterday and I was able to be home earlier than usual. I had taxes to finish. Michael worked ripping more large bushes out of the garden while I filled in all the little boxes on the tax form the tax people sent to us. I was working hard. I was doing lots of math. I was under a time limit as we had a 3:00 phone date with William, our first since he left the country on tour in the Southern Hemisphere for the last month.
Just as I finished the taxes, the phone ran. Perfect timing. Michael spoke with him then it was my turn. They had spent extra time in Tokyo as the lead singer was ill, they had cancelled a concert and flew there to recover a few days before the next concert. He fell in love with their coffee. He said that one has to smell the coffee beans before choosing the coffee. Along with a homemade sandwich where everything was placed on the sandwich with tongs from a place near Barney's, he was in heaven. He so loved the food in Japan.
Jet lag was bothering him yet he was getting ready to fly to Nashville for more rehearsals before they take off for another tour next month. He will also be looking at real estate while there. We talked for probably close to 45-minutes, which is long for him. It was lovely to hear his voice and it just filled my soul.
This morning, I will drop the taxes off before picking Jeannie up for our rehab class. After I get home, Anna said she would phone to talk about their visit to our house while we are on the road trip. I need to warn her about a few things - if one opens a specific kitchen drawers and the refrigerator at the same time, it will dent the refrigerator - and warn her about our water issues. It is really expensive due to the drought. Things like that. I will have it all in writing for them.
Also, I am going to try to finish making the final 4 or 5 hotel reservations for the trip. After that, I can begin to work off the list of what I need to buy and do before the trip. So much. Instead of feeling overwhelmed, I must stay focused on the moment when it is all done and we pull out of the driveway on May 5. Let the magic begin!
Just as I finished the taxes, the phone ran. Perfect timing. Michael spoke with him then it was my turn. They had spent extra time in Tokyo as the lead singer was ill, they had cancelled a concert and flew there to recover a few days before the next concert. He fell in love with their coffee. He said that one has to smell the coffee beans before choosing the coffee. Along with a homemade sandwich where everything was placed on the sandwich with tongs from a place near Barney's, he was in heaven. He so loved the food in Japan.
Jet lag was bothering him yet he was getting ready to fly to Nashville for more rehearsals before they take off for another tour next month. He will also be looking at real estate while there. We talked for probably close to 45-minutes, which is long for him. It was lovely to hear his voice and it just filled my soul.
This morning, I will drop the taxes off before picking Jeannie up for our rehab class. After I get home, Anna said she would phone to talk about their visit to our house while we are on the road trip. I need to warn her about a few things - if one opens a specific kitchen drawers and the refrigerator at the same time, it will dent the refrigerator - and warn her about our water issues. It is really expensive due to the drought. Things like that. I will have it all in writing for them.
Also, I am going to try to finish making the final 4 or 5 hotel reservations for the trip. After that, I can begin to work off the list of what I need to buy and do before the trip. So much. Instead of feeling overwhelmed, I must stay focused on the moment when it is all done and we pull out of the driveway on May 5. Let the magic begin!
Monday, March 5, 2018
Energy to Burn
The energy continues to flow. I ran errands over the pass with Michael before we fought the weekend Costco crowd to order our new glasses and my contact lenses. After a great lunch, we arrived home ready to work on the May road trip. Michael headed to the side yard where he was working to remove the stump, which is remains after the large tree was removed, while I began the chore of making hotel reservations.
I was nervous. I was nervous about making the reservations for the correct dates. I was rather surprised to discover that prices have gone up again. Back in 2000, the average Hampton Inn hotel room was around $69-79/night. We have noticed an increase with each every other year trip and now, 18-years later, the average price is $150/night but some as high as $180.
While making the reservations, I made the packets for each day, including maps. It took about three hours to complete just over half of the reservations. I am planning to attack more this afternoon. The problem was that I was so focused that I could not calm down and relax so I didn't sleep well last night. I kept trying to remember to add something to the to-do list or to check something.
On my mind is trying to get the trip organized, Anna wants to talk about the house and gardens and what I need them to do while we are gone, William is phoning today at 3PM, the tax people are waiting for my taxes and they are a few hours away from being ready to hand in and finally, since we are leaving on the trip in May and my niece is due with a new baby girl in late June/early July, I need to make a baby quilt before we leave for the trip.
I am feeling overwhelmed!
I was nervous. I was nervous about making the reservations for the correct dates. I was rather surprised to discover that prices have gone up again. Back in 2000, the average Hampton Inn hotel room was around $69-79/night. We have noticed an increase with each every other year trip and now, 18-years later, the average price is $150/night but some as high as $180.
While making the reservations, I made the packets for each day, including maps. It took about three hours to complete just over half of the reservations. I am planning to attack more this afternoon. The problem was that I was so focused that I could not calm down and relax so I didn't sleep well last night. I kept trying to remember to add something to the to-do list or to check something.
On my mind is trying to get the trip organized, Anna wants to talk about the house and gardens and what I need them to do while we are gone, William is phoning today at 3PM, the tax people are waiting for my taxes and they are a few hours away from being ready to hand in and finally, since we are leaving on the trip in May and my niece is due with a new baby girl in late June/early July, I need to make a baby quilt before we leave for the trip.
I am feeling overwhelmed!
Sunday, March 4, 2018
Greatly Improving
What a great few days. All the good news Thursday then a great day with mom on Friday followed by a fun gig with the Irish Fiddling gig in the evening. Normally exhausted after such a week, I still felt great and good enough to do some food shopping yesterday morning before our eye exams at Costco later in the morning.
The glaucoma has really affected my right eye. Nuts. Michael helped me pick out new glasses frames and I helped him pick out some sunglasses frames. We are a good team! We then separated and I did a quick run through Trader Joe's for a couple of simple dinners.
All this and I was not overly tired last night. I am really improving.
Today, we are going over the pass together then out to lunch somewhere. Then, I need to finish the paperwork for our taxes, make all the hotel reservations for our road trip and phone William. He is home and struggling with a bit of jet lag. I'm excited to hear about his experiences being in Jakarta for the first time and all the other wonderful places they toured.
I may not even need a nap! Things are looking up!
The glaucoma has really affected my right eye. Nuts. Michael helped me pick out new glasses frames and I helped him pick out some sunglasses frames. We are a good team! We then separated and I did a quick run through Trader Joe's for a couple of simple dinners.
All this and I was not overly tired last night. I am really improving.
Today, we are going over the pass together then out to lunch somewhere. Then, I need to finish the paperwork for our taxes, make all the hotel reservations for our road trip and phone William. He is home and struggling with a bit of jet lag. I'm excited to hear about his experiences being in Jakarta for the first time and all the other wonderful places they toured.
I may not even need a nap! Things are looking up!
Friday, March 2, 2018
The Good News Continues
The alarm rang before dawn and I was on the road into the city by 6:30, through a rain storm but not a lot of traffic. Parking was easy and I was an hour early for the appointment with the head of the Lung Transplant Clinic. With time to relax in the lobby, I was heading to the coffee cart just outside the door of the clinic building when I bumped into Dr. K. Again! Two days in a row!
She asked how my leg was healing and mentioned that she had reviewed my pulmonary function tests after seeing my the day before. What a doctor! She was as pleased as I was that the pneumonia was not an exacerbation of the disease. My numbers were similar to the previous PFTs. I mentioned that I would be seeing her in two weeks.
After enjoying an amazing cup of coffee, I headed upstairs about 45-minutes early for my appointment. I sat and watched. It was a very loose and friendly clinic. No one was in a hurry. In the meantime, I was glancing at my watch as I needed to be out of there by 10:30 to drive home to pick Jeannie up for our rehab class. Drama.
Finally, I was escorted into a room and a lovely doctor arrived to asked some questions they had after reviewing all my records. Then, I waited some more. Finally, this amazingly young, beautiful, brilliant, smiling, tiny woman arrived. We connected. She got me and what I am all about. She told me that I should share my story as it would help others. I didn't mention this blog. I didn't mention all the speeches I have given or the number of people I work with in rehab class and beyond.
The great news is that she did not recommend that I have the re-so surgery of my failing Nissan fundoplication. She said that my current circumstances would not preclude me from having transplants. She also commented that with my exercise program and how my body reacts to it, I may be able to keep the transplants at bay until I age-out when I hit 70-years old. That, my friends, is only five short years away.
We said our goodbyes, she said she expects not to see me for a few years and I headed to the elevator. My phone rang. I checked it when I left the building and saw that Jeannie had left a message. I phoned her immediately. Apparently, she was with her sister the day before and got chilled. Also, the power was out. She was calling to tell me that she was not able to attend the rehab class. The pressure was off. I didn't have to race down the coast. I headed home, ate a simple lunch and took a nap. It was just what I needed to prepare for today.
But, I worry about Jeannie. Her health is so fragile and something like this could begin a fast downward spiral. I hope not. I am going to phone her again on the weekend to see how she is doing.
She asked how my leg was healing and mentioned that she had reviewed my pulmonary function tests after seeing my the day before. What a doctor! She was as pleased as I was that the pneumonia was not an exacerbation of the disease. My numbers were similar to the previous PFTs. I mentioned that I would be seeing her in two weeks.
After enjoying an amazing cup of coffee, I headed upstairs about 45-minutes early for my appointment. I sat and watched. It was a very loose and friendly clinic. No one was in a hurry. In the meantime, I was glancing at my watch as I needed to be out of there by 10:30 to drive home to pick Jeannie up for our rehab class. Drama.
Finally, I was escorted into a room and a lovely doctor arrived to asked some questions they had after reviewing all my records. Then, I waited some more. Finally, this amazingly young, beautiful, brilliant, smiling, tiny woman arrived. We connected. She got me and what I am all about. She told me that I should share my story as it would help others. I didn't mention this blog. I didn't mention all the speeches I have given or the number of people I work with in rehab class and beyond.
The great news is that she did not recommend that I have the re-so surgery of my failing Nissan fundoplication. She said that my current circumstances would not preclude me from having transplants. She also commented that with my exercise program and how my body reacts to it, I may be able to keep the transplants at bay until I age-out when I hit 70-years old. That, my friends, is only five short years away.
We said our goodbyes, she said she expects not to see me for a few years and I headed to the elevator. My phone rang. I checked it when I left the building and saw that Jeannie had left a message. I phoned her immediately. Apparently, she was with her sister the day before and got chilled. Also, the power was out. She was calling to tell me that she was not able to attend the rehab class. The pressure was off. I didn't have to race down the coast. I headed home, ate a simple lunch and took a nap. It was just what I needed to prepare for today.
But, I worry about Jeannie. Her health is so fragile and something like this could begin a fast downward spiral. I hope not. I am going to phone her again on the weekend to see how she is doing.
Thursday, March 1, 2018
Good PFTs
What a day! I woke up at 3:30AM and couldn't sleep while waiting for the alarm to ring at 5AM. Into the shower and out the door at 6AM on the dot! Traffic? Piece of cake. Parking? Easy! I had to wait for the blood draw center to open but was able to put my name on a list and I was #8 of the day!
While waiting for the blood draw, Dr. K. was on her way to the clinic, we said a hello across two aisles, she asked how I was doing, I said I was great and she kept walking.
The results came in while I was eating breakfast. All the liver functions numbers are great and my cholesterol numbers are excellent. All good.
I read, walked and wandered to help digest the food before the 11:00 pulmonary function tests. I only have two: Spirometry and Diffusion. Thankfully, after recovering from pneumonia, the numbers are pretty similar to my previous PFTs. The DLCO adjusted for hemoglobin was 11.57 or 48% of predicted. The Forced Vital Capacity was 1.45 or 47% of predicted.
I'll take both and do a little dance, too! I expected to see these numbers worse as I thought the pneumonia may have caused an exacerbation of the disease. A re-set downward.
So, round two happens this morning. Again, out the door and back into the city to my university hospital by 6:30AM for an early meeting with the head of the Lung Transplant Clinic to discuss options regarding my failing Nissen fundoplication. Then, a fast drive back down the coast to Jeannie's for a drive over the pass to rehab class. Then home. Glorious home. Oh, and all this will happen during a huge, driving rainstorm. Great.
Mom gave me an option of staying home on Friday. I may just take her up on her offer!
While waiting for the blood draw, Dr. K. was on her way to the clinic, we said a hello across two aisles, she asked how I was doing, I said I was great and she kept walking.
The results came in while I was eating breakfast. All the liver functions numbers are great and my cholesterol numbers are excellent. All good.
I read, walked and wandered to help digest the food before the 11:00 pulmonary function tests. I only have two: Spirometry and Diffusion. Thankfully, after recovering from pneumonia, the numbers are pretty similar to my previous PFTs. The DLCO adjusted for hemoglobin was 11.57 or 48% of predicted. The Forced Vital Capacity was 1.45 or 47% of predicted.
I'll take both and do a little dance, too! I expected to see these numbers worse as I thought the pneumonia may have caused an exacerbation of the disease. A re-set downward.
So, round two happens this morning. Again, out the door and back into the city to my university hospital by 6:30AM for an early meeting with the head of the Lung Transplant Clinic to discuss options regarding my failing Nissen fundoplication. Then, a fast drive back down the coast to Jeannie's for a drive over the pass to rehab class. Then home. Glorious home. Oh, and all this will happen during a huge, driving rainstorm. Great.
Mom gave me an option of staying home on Friday. I may just take her up on her offer!
Subscribe to:
Posts (Atom)