Living Well with a Bad Diagnosis - Lung Disease

Sunday, November 30, 2014

Rainy Sunday

Do you hear that? Rain. It is loud in the family room because of the cathedral ceiling. A beautiful sound. Keep it coming!

Last yesterday afternoon, I began feeling better. The Coldcalm had done its stuff. No runny nose or that nasty feeling of cold coming whether you like it or not. So last night, out came the Vick's Vapor Rub applied again to the bottom of my feet and another dose of Aprodine. I slept great and feel about 85% this morning. Remarkable. My plan is to wash and iron our bed sheets today then...not much else.

I am going out to buy some salad greens this morning. Since Michael has been home yesterday and today, I must make lunch for both of us. Yesterday, it was a tuna melt sandwich for him and just tuna salad with cole slaw for me. Today? My favorite Whopper in a Bowl Salad. He has never had it. It is hot chunks of ground beef tossed with greens and fresh tomatoes with the "special sauce" dressing. Yummy.

While doing a bit of house cleaning/holiday decorating, I have been enjoying Hallmark's Holiday movies. Cheesy, I know but still fun. Depending how I am feeling in two weeks, Michael wants to invite about eight of his work friends to our house for the first time. I will want the house, gardens and food to be...perfect. He also does not want it to be raining because they will have to drive the pass home in the dark and the house and gardens are so much prettier in the sunlight. We'll see. Either way is fine with me.

The rain continues and I swear it is tap dancing on the roof. It is such a good day to stay home and dry. Enjoy the last day of the Thanksgiving weekend!

Saturday, November 29, 2014

Good and Bad News

It hit full-on around 3:00 yesterday.  A cold. I took the Aprodine last night, applied Vick's Vapor Rub on the bottom of my feet and kept popping Coldcalm right up to falling asleep at 7:30. My nose is not running this morning. That is a good sign. The worry is that any cold can go to my lungs where it settles in to develop pneumonia, then into the hospital I go. No, thank you. Going to fight it again.

The rains begin today and continue through the week. The total rainfall for the week should wipe out the current shortfalls. That is good news.

Also in the good news column, William is flying into Chicago today. After a 9-week tour in Europe, he has been online trolling menus of the area's restaurants plotting his return to American food. Great food town. They are now beginning the next part of the tour as the opening band for a huge band in large arenas, which is not his most favorite place to work the sound system. But, it should be a fun ride.

Us today? Michael needs to pick some parts up from his little shop and bring them home. That's it. That's all that is planned. Okay, maybe we will go out to get some lunch. I plan to take it easy, balance the checkbook, write out the bills and prepare to jump into December. It is going to be a wild ride. Fasten your seat belts!

Friday, November 28, 2014

Thanksgiving and Turning the Search Over to the Next Generation

One winter holiday done, one to go! We had a ball. One of the nicest Thanksgivings in recent memory. Simple food, well prepared and delicious. The time flew by. My niece had asked me to bring all of the information about mom's brother, Jerome, who was a navigator of a B-17 when it was shot down during a bombing run over Breman, Germany in 1943. My grandmother had put together a scrapbook of everything she had, including the actual telegram of the bad news. She then took all of his letters and had them printed into a book. Also included was a letter written in 1946 from one of the four survivors of the crash who wrote to her with all the details of that day. He and another man were POWs until the end of the war, while two others made their way back to England. After the war, Mom's family was politically powerful enough to ask for a Senate investigation into the incident, so that report was also included.

In 1993, I got the all that information from mom's sister, Rita after William wanted to dress up as Jerome as a person from history. He needed to learn about him. He dressed up as a WWII navigator and even wore Jerome's Purple Heart. After reading everything given to me, I vowed to find any remains to have them buried in an empty grave next to his mother. I tried. I tried for a couple of years. I contact Tom Lantos who led me to The National Archives. From there, I worked, wrote a lot of letters, got the actual German documents of the crash, got the American documents of the crash and the investigation report.

I learned why and where it crashed. I also learned that it was the only plane that went down in the entire region. My guess is that the bodies were stripped of anything of value then quickly buried to cover up the theft. Jerome had a solid gold pen and pencil set that Mr. Sheaffer of Sheaffer pens had given to him before he left for Europe. My grandfather had designed their logo. Not long after the crash, the German military came to remove the plane pieces. There was no mention of bodies found in the documentation. I know that the local people would remember it. Kids would remember it. I wrote to local churches asking for their help. Dead ends. I contacted an airlines where the pilot said he was getting a job. They had nothing. Finally, it became as cold case, as they say on TV.

Yesterday, I turned it all over to Shelley and her boyfriend Russ. He is a Major in the Coast Guard Reserve and finishing up a Master's program in History. A history geek. Truly. We briefly went through the documents, he told me that he had some ideas of where he can go to move the search forward. We locked eyes. We were alone together. I said, "If you can find any of his remains that we can bury next to his mother before my mom dies, that had been my goal. I tried to do it before Rita died but just couldn't do it." He replied that I had done a ton of work and that he thinks we have a pretty good chance of bringing something home.

Wouldn't that be amazing?

Thursday, November 27, 2014

Thanksgiving

Happy Thanksgiving! I so wish the day's travels, cooking, eating and being around family fills hearts with joy. It is a special holiday, so much less drama and work than Christmas. We will be connecting with our son in Europe as he is in the final days of the 9-week tour. It seems like forever.

This morning, Michael and I will phone my Uncle Bill's widow in Tennessee. We visited with her last May, she remembered us so I hope she will be able to speak with us. She was struggling to find words.

I just sent an email to Christien in North Carolina and we are planning a nice, long chat sometime on the weekend. She just got home from a visit with her mom to spend Thanksgiving with her daughter.

In a couple of hours, Michael, mom and I will begin the long drive over a bridge and on crowded freeways to my sister's home over 100 miles away. As I am the driver this year, I am a bit nervous. While waiting for dinner to finish cooking, the entire group of us will phone Chip and Betty in New Mexico and have a nice chat. But, while we are there, I will make sure to take a moment to breathe in the sweet smells of the season and the watch the smiles and hear the laughter of a family being together.

Happy Thanksgiving.

Wednesday, November 26, 2014

Thanksgiving Plans

Today. Both of us. Alone all day. Playing hooky. Michael took today, tomorrow and Friday off of work. Three whole days! He is going to work on a project in the garage today while I hit the yards. A huge storm is due on Saturday so I want to be prepared.

We are spending Thanksgiving with my sister and her family. Since I am with mom every week, I try to leave them alone to talk and spend some time together. They are just serving turkey, stuffing and green beans for dinner. I think there may be a pie involved as well. Perfect. It will be easy to not over eat! For that, I am thankful!

But, I am nervous about having to drive over 200 miles round trip, in the dark and tired. The saga of Michael's driver's license reinstatement continues. Yesterday, I completed all the forms, had him sign everything, ran to the UPS Store to make copies then sent his personal statement to the DMV before driving to the northern most Kaiser of his primary doctor. The parking situation was a zoo. After driving up and down and through the parking structure, I spotted a car leaving a restricted area. I didn't care! Tow me! It was for limited time for the pharmacy pickups. Done. Hopped out, wandered around to find the Business Office and met Miss Attitude. "Where is the Kaiser form to allow us to fill out this form? And, by the way, we don't send it to the DMV. We give it all back to you." Great. As the form has a time limit attached to it, I am still concerned that we won't be able to get it into the DMV on time. Ah, stress. So, Miss Attitude gave me the form, which I had to drive back down the Peninsula (in horrible traffic) to Michael's work, we filled it out and I refused to go back to that parking structure. I may never be heard from again. Lost forever circling around trying to find a parking space.

So, I headed just a bit south to the Kaiser of the neurologist. Parking? Got a front spot. No waiting. Wandered into buildings and was told I was totally lost. "Cross the street, follow the path, go past two buildings, walk through that parking lot and there will be a small building." Okay, then! I stumbled around then found it, turned the forms in and learned that they would be completed in 4-5 days. They will phone me so I can go back to pick them up. We will read what the doctor wrote, then send them to the DMV via UPS so we have a tracking number. After they review all the papers, Michael will be interviewed either by phone or in person. Maybe by Christmas he will have his license back!

After all this, I ran to my rehab class and had a ball with my rehab boys. They were in fine form. After rehab, I got my toe nails done. Red. I now feel ready to face the holidays!

Tuesday, November 25, 2014

Stay Well Through the Holidays

The neurologist was jubilant and so happy for us yesterday. All brain tests: normal. He asked to see Michael in six months. All good news. Michael and I met back home after his work and after dinner, answered all the questions on the form to reinstate his driver's license. I tweaked them on the computer and will hand write them into the tiny spaces this morning after letting them marinate overnight. I like to reread everything and make minor changes. This morning, I am going to take the papers to have them copied then to the Kaiser business offices. Hopefully, they will completed and submitted soon! Drama!

My rehab boys are expecting me at class today. I need a good workout. My toe nails need painting so I will swing by the nail place afterwards to see if they have time for me.

Do you remember the woman Sherman spoke to then referred to me? She was up for lung transplants but was turned down due to the weight she had gained on prednisone. I had given her a lot of recipes and the formula I have been using: 1,200 calories, exercise everyday, 3-4 ounces of protein and non-starchy vegetables. She showed up in our class last week, as she had graduated from the 8-weeks of education and rehab. I almost did not recognize her. She had lost a lot of weight and looked so happy! She had been so depressed! It made my heart sing!

Stay well. Try to wash your hands a lot. Avoid sneezing people. Don't shake hands. We are in the holiday season where we begin to share lots of indoor time with others. Let's not share the flu or a cold.

Monday, November 24, 2014

No Routines

For the last couple of day, my life has been very simple and quiet. The upside of Michael not having a driver's license is that I have been spending more time with him than usual. It has destroyed my routine but I don't care. He is alive and functioning and feeling normal again.

I have to do NOTHING for Thanksgiving, except drive Michael and my mom to Lee and Jeff's home where we will also enjoy their daughter Shelley and her boyfriend Russ. A small gathering. William will still be in Europe. No Thanksgiving for him!

Yesterday, Michael wanted to do a few things at his shop before meeting up with the twin and a business friend. I kept myself busy by hitting the Dollar Store then CVS. Mom's CVS. While paying, guess who walked through the doorway? Yup, she did. What are the odds? We walked and talked together, she bought what she needed before heading to Starbucks for a Chai, we sat in the car and chatted some more! Finally, it was time to pick Michael up and head home.

Today is a big day for us. I will hit AAA to help us with some issues regarding the Porsche before taking mom to her balance physical rehab. After a very quick lunch, I will swing by to grab Michael for his final appointment with the neurologist. That should be interesting. This evening, we will complete the paperwork for the reinstatement of his driver's license and I will drop them off at the Kaiser business office tomorrow. Michael so needs his independence back, I would love my routine back and our lives to return to normal.

Friday, November 21, 2014

Eye Day

There was glorious, sometimes very heavy rain yesterday. The parched earth just swallowed it up! There was even lightening last night, a rather rare event here. It was also a rare Thursday as I spent it with my mom. She had her rehab in the morning and we just stayed together all day. We found a new lunch place - fantastic! - and watched the rain while enjoying a special lunch together. We ended the day by playing a brutal card game. So much fun.

Today, Michael has his 10:30 eye appointment to begin the process to get his driver's license back. Beforehand, I will pick mom up then drive over to his work to gather him and make our way to Costco for the exam. We will also help him pick out new glasses and sunglasses (which will surely drive him nuts) before dropping him back off at work. Mom and I will continue to head south for her shot in her eye. It will be an "eye day."

William and I texted back and forth with updates about his dad yesterday. He is still in Europe and is due to fly back to the US on the 29th. They will go right into concerts throughout the East coast and Mid-West opening for a huge band in arenas until December 22nd. He is so enjoying working with this group, and especially the tour manager who insists on good coffee and food, that he is staying on with them for a few months next year. He is a happy boy.

Thursday, November 20, 2014

Feeling the Stress

Yesterday, I had a facial while waiting for the dye to taking in my hair. It was the first time in weeks that I was so completely relaxed. I am beginning to feel human again. The focus, stress, and the fear of the unknown with Michael's seizure had taken it toll. I was beginning to feel like myself again.

Then, I got an email from his primary doctor. What a nice doctor. He told us we don't need an endocrinologist as his sugars can be controlled by food. And, he mentioned that he would be glad to sign off for Michael to get his driver's license reinstated, just send the papers to the business office. Papers? Onto the Internet, found some forms but then spoke with Anna's husband, the lawyer. He told me that we should have received notification with the Vehicle Code reason for the suspension of his license. We needed that number for the proper form. At his suggestion, I left a message for our insurance agent to run his license number to get this number. Then I got the mail. The actual forms were in the mail. How is that for timing?

He needs an eye test as part of the reinstatement process. And there is a time limit when all this needs to be into the DMV. I felt the stress returning. Making an appointment for Friday, we will also order some new glasses for him. Jumping through one hoop. Then he has to fill out a huge form, give the entire packet to Kaiser and hope that they get it in on time. More stress.

But for today, I will spend the morning with my mom for her balance rehab before my own rehab class.  It is a rehab day!

Wednesday, November 19, 2014

The Trifecta is Back


Through the past two weeks as I become Michael’s caregiver, I have realized that I needed to still be worried about my own health. Exercise, diet and sleep. The trifecta of staying well! All three fell away the first week after the incident when I was overwhelmed with panic and concern. Just this week, I have my focus back: returning to yoga today, returning again to orchestra rehearsal tonight, attending pulmonary rehab classes this week. After rehab yesterday, I cooked my lunches for the week along with dinner for the next few nights. Everything is ready, plated and smelling marvelous in the refrigerator. 

After yoga this morning, I am having a facial while having my hair dyed. My gray/white roots are showing! Anna wants to chat afterwards. Just a check-in. She is still so worried about her little brother. 

Yesterday, we got a reply to our email to the neurologist asking about next steps since the MRI and EEG are normal. His reply? "Stay on the drugs for two years and we will see what happens." What?!? Stay on the awful anti-seizure drugs when this was not caused by a seizure! He was feeling a drop in his blood sugar just before the incident and a seizure is a symptom of low blood sugar. I was furious. After the rehab class, I drove to Michael's work and we phoned Kaiser from the car asking for an advocate. We learned that all we needed to do was to request a referral to an endocrinologist from his primary doctor. We sent that email last night. 

From the very beginning, I told the paramedics, the Stanford trauma doctors, the Kaiser ER doctors, the neurologist, and his primary doctor that this was caused by his continuing struggle with low blood sugar. He has been keeping it stable with diet and exercise for decades. No one HEARD me. Now that we have proved that it was not a heart issue or a brain issue maybe, just maybe someone with finally listen.

Tuesday, November 18, 2014

Recipes for the Week and Good News

The news came through an email around 5:30 last evening. I phoned Michael, who was in a car on his way home. His EEG was NORMAL. Now what? We need to ask to stop the anti-seizure meds, have an evaluation of his blood sugar levels and try to have his driver's license reinstated. We meet with the neurologist next Monday.

Here are the recipes for the week. These recipes are for people who have been on prednisone for a while and we just don't process food properly. No fruit, no grains, no yogurt or milk. The goal is 3-4 ounces of protein and non-starchy vegetables. Enjoy!

Breakfast/Lunch:
Arugula, Caramelized Onion and Goat Cheese Pizza - HERE

Bacon-Wrapped Jalapeno Chicken Bites - HERE
Easy Method Houston Chicken

Dinner:
Baked Meatballs - HERE - I serve with Pasta Slim or other "fake" pasta.

Houston Chicken - HERE - Served with a side salad.

Mongolian Beef - HERE - Michael has rice with this and I have cole slaw.

Monday, November 17, 2014

Talking About Children

I love being a mom and so wish that we were able to have more children. Poor William, he gets all of our attention! We chose for me to stay home with him for as long as possible, which meant no new cars or vacations or going out to dinner a lot. Those nine years were the best times of my life. It was my sweet spot.

Lately, those days of raising a child, especially a teenager, have been relived with a few total strangers. It has happened so many times that I wonder if I am just feeling how long he has been out of the country and how far away he is working at the moment. Last week, it was with a mom of young teen girl and boy while waiting for my animal-style burger at In-N-Out. After a chat, she grabbed my hand and thanked me. She had been overwhelmed with some issues and I was able to take the emotions out the mix, which helped her see things in a different light.

Another was with one of Michael's co-workers. She and her husband are just now beginning to plan for a baby. She had a rough childhood but was now very close to her parents. What would she do differently as a parent? It was an interesting conversation.

The latest was yesterday during the thank you party for our neighbors. Leslie and Joe have a son from his previous marriage, a daughter from her previous marriage and a daughter together. The oldest daughter is in eighth grade and all that brings including friends, boys, school work and sports. And seeking independence. That is always hard on a mom, especially these days. At that age, we always commented to William that we totally trusted him, respected him for his honesty and that we were so very proud of him. How could he do something to lose our respect?

When he was sixteen-years old, my dad gave him their old Ford station wagon. We made sure he had gas, good tires and it was properly maintained. We told him we trusted his driving so he was never to be in another teenager's car. No problem. His group of high school friends hung out at each other's homes and when he was a junior, he asked to stay out until 2AM. Michael told him that he and I needed to discuss it and would get back to him. Michael told me that his 1AM curfew should be cancelled. In fact, he would be put in charge of himself. If his grades dropped or it was difficult for him to get up in the morning, then we would have to go back to the whole curfew thing. Michael was wise enough to see that William was going to be away at college soon and needed to be in charge of himself. He needed to feel the independence now instead of going crazy at college.

When we told him our decision, he was shocked! No curfew? We encouraged him to be off the streets by 2AM because of the bars closing at that time and it was just dangerous. He began coming home around midnight. It all became a non-issue. A couple of years later when he was living in a dorm as a freshman in college, he phoned to thank us for letting him go. He told us that he was dealing with kids vomiting in the hallways because this was their very first taste of freedom away from their parents sight and they were going crazy. They just couldn't handle it.

I guess what I wanted to share with each mom was that we felt it was important for a child to feel that they are in charge of themselves. Complement good behavior. When there was a bump in the road, pull back, explain what was expected behavior, ask what happened and what would happen in a similar situation in the future. All part of our philosophy that to discipline a child was not to punish or hit a child but to teach a child. The child looks up to the parents throughout their life instead of being afraid of their wrath or dissappointment. It may not work with all children but worked with our child. We never had an argument or a fight with him during all those difficult years. We used humor and love and admiration. We all got through it intact. Thankfully.

Sunday, November 16, 2014

Thank You Party

We had a sweet day together yesterday. I played chauffeur and didn't scare Michael with my driving too much! Lots of chores were done after we got home so both of us slept well last night. The focus of today is the little party we are throwing at 4:00. Appetizers and cocktails. A simple thank you to the neighbors who did so much for us during Michael's incident.

There is a plan of a quieter week ahead, thank goodness. As Thanksgiving will be at my sister's this year, mom and I are going to buy a little something for her tomorrow. Shopping. Always fun with mom.

So within minutes, I will begin my day dusting, vacuuming, throwing on clothes to do a quick Safeway run, picking up the garden and doing a bit of watering of the pots. Then the food preparation begins. It should be a fun Sunday.

Saturday, November 15, 2014

What a Week!

Rough week. Lots of driving. Too many doctors. Not enough answers. I was done and ready for bed by 7:30 last night.

The EEG results will be given to us next week. We are not amused. The wait is horrible and I know the report is finished. I am worried that it is bad news. I am hoping that it is not the slam dunk the doctor is expecting and I can push that it was caused by a dramatic spike then crash of Michael's blood sugar. In the meantime, I worry.

My mom is suddenly walking with so much more steadiness and her balance has greatly improved. The physical therapy routine has been so very helpful.

I had the good news about my liver being stable after years of prednisone and a nice check-in with the nutritionist this week.

What I have missed this week has been consistent exercise. There has just been no time with all the drama and doctors. Today, I am driving Michael over the pass to work on a project while I workout at the other rehab. We will meet for lunch then come home. I have lots of laundry and preparations to complete. We have invited Ron, Susan, Leslie and Joe for cocktails and appetizers on Sunday afternoon as a simple thank you for all of their help during the incident.

Friday, November 14, 2014

Crazy, Stress-driven Dream

I am exhausted. Yesterday took it out of me and I have to face more today. The drive into the city was the worst ever, needing an additional hour to make the trek. The meeting with the liver doctor went well, I only have to check-in with them once a year to have a new scan to track my liver function. They will also be writing a memo approving me for lung transplants, if needed. A good appointment!

Then the race began. Back down the peninsula, the major freeway was stopped due to accidents so I had to go another way to mom's house to quickly grab Michael's cell phone and jacket we had left the day before. After a very quick visit, I continued to make my way through horrible traffic to his work to deliver the phone before going to the rehab class. It was such bad traffic that I arrive to the rehab class with just minutes to spare. The reason for the horrible mess? Rain. Not a huge storm. Not lots of winds. Just a drizzle. People here freaked out.

Did I mention that I will do it all again and am even going further into the city this morning?!?!? It is drizzling again...

Stress of Michael incident, dealing with his doctors and waiting for the results of the EEG is invading my dreams. They are wild, crazy and making no sense. Last night, I had a dream that our friend Joanne from Ohio came to visit me at my parent's old house, there were no extra bedrooms for her so she was sleeping on a stair and my sister was sleeping on a stair below her. I felt terrible that she was going to sleep there but she kept insisting that she would be just fine. Such vivid dreams are rare for me.

Thursday, November 13, 2014

Throwing Michael Around

After throwing Michael around in an exercise the doctor taught us to help his vertigo last evening, his steadiness was much improved this morning. It was weird. I took his head, turned it towards me and quickly laid him flat on the bed, held him then turn his head the other direction then pointed his nose to the floor. We did it several times. Michael finally read the handout while I was at the orchestra rehearsal last night and discovered that it recommend that we do this 10 times in a row! Each time, he got dizzy and nauseous but less and less with each exercise.

The EEG went just fine. After 30 electrodes were attached to his scalp, he was entertained with flashing lights and noise before silence. He fell asleep. Now, we wait for the results. Does he have a seizure disorder? If not, we will ask to see a hypoglycemia specialist.

Me? Today is the meeting with my liver doctor to discuss the recent liver biopsy. With ten years of prednisone under my belt, there were indications that I had developed cirrhosis, which would then be difficult to gain approval for lung transplants. No cirrhosis in sight. Jumped through that hoop!

After our meeting in the city, I need to grab Michael's phone at my mom's (we forgot his jacket there yesterday), deliver it to his work, run to pulmonary rehab, buy a pound of Peet's coffee on the way home then make a fantastic dinner of Chicken Cordon Bleu and braised cabbage. Another full day after a late night. We are looking forward to a quiet weekend!

Wednesday, November 12, 2014

Let's Have an EEG Today!

Still sneezing a bit. Still taking Coldcalm and feeling...better. Michael's office friend Thomas and his wife Julie are heading to NYC today to introduce her to a few of his relatives. It was also his birthday yesterday. We arranged to have me meet five of Michael's office friends on the Avenue to have drinks and food. I got there early, discovered a $6.00 appetizer happy hour and ordered up before they arrived. The mom in me wanted to be sure everyone had food in their stomachs. It was fun. They are all our son's age! It was a very unusual Tuesday night for us. We didn't get home until 8:00!

With Michael's EEG this morning, he had to stay awake until midnight then only sleep five hours. It worked. He is now in the shower because he must have clean dry hair. We leave in an hour.

Michael phoned William in Sweden yesterday and thanked him for all the questions, concerns and the offer to fly home. He was very touched. William replied, "You're my dad! Of course, I am very concerned!"

Meeting with the primary doctor was interesting. He was humored us about the blood sugar. He was impressed that his normal fasting rate seemed to be 80. Not too low. He ordered some blood tests and told us to contact him if Michael often tests in the 60s. Um, thanks.

The results of the EEG should be ready later today. Does he have a lot of small seizures happening? Was this a fluke due to his blood sugar? We'll see.

Tuesday, November 11, 2014

Lots of Questions

William had many questions for me through text messages yesterday. I guess after sleeping on the news that his dad had a major seizure, he got on the computer to do some research. He also offered to quit the tour and come home to help out. Michael was rather touched but I responded that his dad was at work all day and was doing really well. Improving daily. I do understand that he was feeling isolated and very far away.

The sneezing began yesterday and I felt the early rumblings of a cold. Out came the Coldcalm and the Aprodine and I am feeling better. After the meeting with the doctor this morning, I will drop Michael off at work, head home to cut the grass since it is supposed to rain on Thursday, then meet him on the Avenue for cocktails at 6PM. Well, he and I won't have cocktail but we will be hanging with several of his work friends. Thomas and Julie are heading to New York City so Julie can meet some of his relatives. A bon voyage party.

Mom and I enjoyed her rehab yesterday. She was working on her balance and the strength in her hips. The PT loved her as she just really wanted a good workout. I guess that was rare for a woman of her age. She needed a thyroid blood test at her university hospital before we had a fantastic In-N-Out Burger for lunch (protein-style for me). After Trader Joe's, I screamed home to get some Braised Short Ribs in the oven for three hours. They were delicious for dinner for a very cool Fall day.

Michael's highly anticipated doctor's appointment is today. We tried the new blood testing monitor yesterday and he tested his blood after dinner and before bed. Stable. 104. 108. After a week or two, we will try to replicate the food before his crash. We just realized that he had also pulled back from milk because of the latest finding that it is not the best for you. He has been drinking a gallon of milk a week for a long time. That along with the high carb lunch did him in. So we think. Now, we have to prove it. Today begins that challenge.

Monday, November 10, 2014

Finally Sharing with our Son

Gearing up for the week. Mom has her rehab today followed by some food and Christmas shopping. Yes, I said the word I have been avoiding and refusing to walk down any aisle in any store that has Christmas displays. But, she found the Macy's Christmas store and...well, we need to check it out.

My birthday was very quiet, which was just fine for the two of us. We were both needing a day off. William was on tour with a stop in Basil Switzerland and phoned after the concert around 3:00 our time to wish me a happy birthday. It was great to hear his voice, even though he had a screaming cold. I hate it when I know he is sick. I want to fly to wherever he is, make chicken soup and hover over him. We had been waiting for this call.

He and I made a deal that if he was out of the country and I got sick, he wanted to be told when it all settled down rather than just going into it. He said it made him feel so helpless and wanted to hear what happened, unless I went down hill. So, when Michael has his seizure, we knew he would phone me for my birthday a week later and we would have more information about what happened to him. I was able to relay the basics to William then he spent a long time talking with Michael, which helped calm his anxiety.

Michael is feeling like he is 75-80% of normal. He is still very unsteady, especially in the morning. Dizziness is also an issue, which I believe is related to his inner ear fluid getting messed up in the fall. We plan to see his primary doctor tomorrow and will discuss the blood sugar and inner ear issues.

I am looking forward to my Thursday appointment with the liver doctor. It will be our first chat since my liver biopsy so I will have more information to share afterwards.

Sunday, November 9, 2014

A Very Happy Birthday

Today is my birthday. Now a week after Michael's seizure, I already have my birthday gift. He is alive, functioning, talking and almost himself. That is the best present ever.

We ran to Kaiser to grab the new blood glucose monitoring meter then stopped at Nordstrom because I noticed my brown tights had a run in them. By noon, we nabbed British Don from his city loft and walked to a fantastic place just three blocks away. It was in an old factory and was a totally cool environment. The food was perfect. Their URL is:  HERE We then drove to a new coffee spot and sat for another couple of hours. By 5:30, we were home and thinking about dinner when the phone rang. It was Jim. He had fresh Dungeness Crab. The first of the season.

We drove to the other end of town, told him about Michael's week, hauled three crab home and enjoyed about half of them for dinner. The best crab. They were much sweeter than last year's crop. Guess what's for lunch today? By the time we settled in, we both were exhausted.

Wayne and his family invited us to join them for a birthday lunch today but we are going to just stay in. Maybe later, we will have a light dinner in town, I will ask Michael to order a dessert so I can have just a bite of birthday cake.

All in all, a perfect birthday filled with gratitude.

Saturday, November 8, 2014

TODAY'S EVENT IN SACRAMENTO

It is a bit late but if you are in the Sacramento area, the below event would be interesting and even includes a free lunch!

Yesterday felt like a day away from the recent stresses. Michael went to work all day, I spent some time with my mom then enjoyed an absolutely delightful lunch with Dolores. Three hours! Surely, a new record for us! Last night was the first night I have slept soundly since last weekend. I am feeling stronger this morning. Today, we are meeting British Don for lunch in the city. Beforehand, we will swing by Kaiser to grab the blood sugar testing kit and prepare to see that doctor on Tuesday.


email header
The Pulmonary Fibrosis patient event (free event also includes free lunch!) is coming up this weekend and there is still time to register!  There will also be refills for oxygen available onsite.
You don't want to miss this opportunity to meet top Pulmonary Fibrosis physicians and researchers and ask them your burning questions!  Reserve your seat NOW for the Living with Pulmonary Fibrosis Patient Event happening on Saturday, November 8th. Email Maya Juarez at UC Davis now and let her know you're coming: maya.juarez@ucdmc.ucdavis.edu
You've been hearing all of the news and exciting progress happening in Pulmonary Fibrosis such as the two FDA approved drugs for Idiopathic Pulmonary Fibrosis (IPF) recently (nintedanib and pirfenidone). Come hear the details and updates directly from the experts at University of California, Davis (UC Davis) Medical Center Interstitial Lung Disease (ILD) program.  To view the invitation, clickhere.
Again, to RSVP for this free event, just email Maya Juarez (maya.juarez@ucdmc.ucdavis.eduand let her know you are attending the UC Davis event. Please note how many will be in your party or list the names of your caregiver or family members attending with you, and also let her know whether you need additional oxygen during the event or have any dietary restrictions.
Please note the meeting is in Sacramento at the UC Davis Medical School.  See details and instructions below.
Sincerely, 
Mishka Michon, CEO, Coalition for Pulmonary Fibrosis

Who?  UC Davis Medical Center ILD Program and the Coalition for Pulmonary Fibrosis
What?  Living with Pulmonary Fibrosis Patient Education Event: a free event for patients, caregivers and families
When?  Saturday, November 8th
Times:  8:30-9:30 a.m. Registration and complimentary light refreshments
Program:  
9:30 a.m. - 2:30 p.m. 
Where?  Location:  UC Davis School of Medicine, Education Building, 4610 X St, Sacramento, CA 95817 Classroom 1222
RSVP:  Maya Juarez at maya.juarez@ucdmc.ucdavis.edu - include your name and the names of your caregiver or family members who plan to attend with you or just the number in your party and let her know whether you will be needing additional oxygen during the event or have any dietary restrictions.  
*  Complimentary lunch will be provided
*  Oxygen refills will be available onsite.
This PF patient event is made possible through an education grant from Gilead. 
Directions to the event at the UC Davis School of Medicine
Parking:  Directions to the parking lot on UC Davis campushttp://www.ucdmc.ucdavis.edu/parking/downloads/UCDMC_Campus_Map.pdf  
(The Education Building is marked with a "J" on this map. Parking is in Lot 12, just south of this building).
Directions:
From the north (Sacramento International Airport, Redding)
1.        Take I-5 south to Business 80/Capital City Freeway east (Reno).
2.        Follow Business 80/Capital City Freeway east to Highway 50 (Placerville).
3.        Take the 34th Street exit and turn left onto 34th Street.
4.        Turn right onto T Street.
5.        Turn right onto Stockton Boulevard.
6.        The Sacramento campus will be on the left.
7.         Turn left onto X Street
8.         Turn right onto 45th
9.         Turn right into parking lot 12
10.         The Education Building will be on your left as you drive into the lot.
From the south (Stockton, Los Angeles)
1.        Follow Highway 99 or I-5 north to Business 80/Capital City Freeway east (Reno).
2.        Exit at T Street.
3.        Turn right onto T Street.
4.        Turn right onto Stockton Boulevard.
5.        The Sacramento campus will be on the left.
7.         Turn left onto X Street
8.         Turn right onto 45th
9.         Turn right into parking lot 12
10.         The Education Building will be on your left as you drive into the lot.
From the east (Placerville, Lake Tahoe)
1.        Take Highway 50 to the Stockton Boulevard Exit.
2.        Turn left onto Stockton Boulevard.
3.        The Sacramento campus will be on the left.
7.         Turn left onto X Street
8.         Turn right onto 45th
9.         Turn right into parking lot 12
10.         The Education Building will be on your left as you drive into the lot
From the west (Davis, San Francisco)
1.        Take Business 80/Capital City Freeway east (Reno) to Highway 50 (Placerville).
2.        Take the 34th Street exit and turn left onto 34th Street.
3.        Turn right onto T Street.
4.        Turn right onto Stockton Boulevard.
5.        The Sacramento campus will be on the left.
7.         Turn left onto X Street
8.         Turn right onto 45th
9.         Turn right into parking lot 12
10.         The Education Building will be on your left as you drive into the lot.
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org


Friday, November 7, 2014

Lots of Good News

This lack of sleep is really killing me. I am still in the panic and gathering information stage of Michael's seizure, so sleep is eluding me. Maybe this weekend I can catch some naps and downtime.

The great news is we got the official word that the MRI was normal. No tumors, thank goodness. Now we wait to see the damage the seizures have done in his brain with the EEG on Tuesday.

The other wonderful news is that he is feeling fantastic. I worried all morning yesterday then he phoned around 11:30 to tell me that he could feel his brain healing at work. He was thinking well. He was functioning well. I felt my whole body relax. Such very good news.

I spent some time with mom yesterday. She was missing me! I am going be with her again early this morning then I am so looking forward to spending some time with my friend Dolores. It has been too long. We have a lot of catching up to do! It will also be a chance to take a deep breath and feel a little bit normal again.

It's funny, all the things that I have learned about living well with my bad diagnosis have transferred to Michael. He does not have depression. He knows that he may have to make some adjustments in his life but to keep moving forward. He knows to try to see the silly side of a bad situation and laugh as much as possible. And not to worry about things that "might" happen. That is so important.

Thursday, November 6, 2014

Steps Forward

I had to run to the city to meet with the Weight Management doctor, whom I adore. She sat, listened as I told her about Michael's incident and remarked that it will take time for him to return to normal. She also reminded me that it had only been three days since the seizure. She said that the MRI will probably not show anything unusual, the EEG will mark where the damaged happened but we may never know the cause of the seizure. That is scary because he may never be able to get his driver's license back. His independence. I felt better talking with her and hardly noticed that I had lost three pounds!! Stress!!

Michael refused to come to the appointment with me. I was nervous leaving him home alone as I worried about a late clot on his brain or another fall as he was still unsteady. He was fine. After I got home, I made an appointment with his primary doctor to discuss his blood sugar, he ordered the kit from the pharmacy so we will meet next Tuesday morning. Then I phoned the neurologist. With all my experience, I know that the front desk people and the nurse are important people to try to make personal connections. The nurse remembered us and opened up. She said the doctor was doing a major spinal surgery and would probably not phone us that evening. I remarked that we were so nervous waiting to hear the results of the MRI. She checked, saw the report was completed the previous evening then told me that their rules are that if something was on the MRI, the patient must be immediately notified. No news is good news. Thankfully.

In the morning, I mentioned that his mother was very concerned about him and it would give her comfort just to hear his voice. He phoned her. A big step as he had not wanted to talk to or see anyone. While I was gone, he spoke with Anna and his buddy Ricky. After dinner, his best friend Wayne dropped by. I was stunned. Michael's speech has been slower, he searches for words, lots of pauses and just not right. With Wayne, he was himself! No problem with his speech! It was amazing. He really needs to be around people.

Today is a big day. A test of sorts. Michael is going into work. I am going to mom's this morning followed by the rehab class. Afterwards, I will swing by his work to see if he wants to come home or stay until 5:30.

The goal is to get back to our normal routines as soon as possible. With adjustments. Sound familiar?

Wednesday, November 5, 2014

Waiting for Results

I have a meeting with the weight management doctor at 1:00 today. Michael refuses to go with me so I will worry the entire time I am away. The neighbors will be gone. I may try to force him into the car...but he is really stubborn.

He is talking with his mom for the first time while I type beside him. His friend Wayne is dropping by for a chat after work today, which will lift his spirits. Michael will go into work tomorrow while I go to the rehab class. After class, I will swing by to see if he wants to come home early. I think it will be so good for him to feel normal for a few hours. He is still a bit unstable and dizzy.

We did communicate with the neurologist yesterday and will be referred to an endocrinologist for a blood sugar study. We still believe that is the underlying cause of the seizure.

And we wait for the results of the MRI today. He had no problem with it yesterday and now we look forward to the EEG next Wednesday.

How am I? Not sleeping well and worried. Staying positive and trying to make him laugh. It helps us both.

Tuesday, November 4, 2014

Lots of Tears

Just a quick blog today: Michael had the MRI early this morning and we should hear from his neurologist later today. We are also following through with having his blood sugar studied. He is feeling 50% better today, still dizzy when he turns his head a certain way but the headache is finally gone.

He is eating more and it is staying down. He is still sleeping a lot, which I believe is his body trying to recover from such a trauma.

While he was having the MRI, I phoned his mom, Anna and then the twin. His mom cried, his sister cried, his twin cried. It was a rough morning.

Monday, November 3, 2014

NOT a Normal Sunday

It was not a normal Sunday, after all. It was terrifying.

Everything was fine. Great breakfast. Lazy morning. We decided to go to the Pro Shop at the Ritz for breakfast (we were too early for lunch). Michael ordered a short stack, bacon and an iced tea. It was noon when we left, ran some errands and watched the F1 race. Around 2:00, we headed outside to do a few chores. I left Michael in the garage, cleaned all the cobwebs off the house and finished up in the backyard. Going back into the front yard, I heard, "Leslie, call 911!" It was our neighbor Joe who was over Michael in the driveway yelling at his wife. He was convulsing and bleeding.

He looked at me and yelled, "I think he had a stroke. Call 911!" I sat on the driveway as close to him as I could and directed the fire department and ambulance to the house. For about 10 minutes, Joe tried to keep him on his side, he was convulsing, unfocused, breathing but in an odd way with blood coming out of his mouth and on the back of his head. Lots of blood. I talked to him the entire time.

Paramedics arrived. Moved me aside. I mentioned that he has low blood sugar issues and they immediately checked. It read 67. Low. Apparently, it dropped even further in the ambulance. He began to focus better but was still unresponsive while the paramedics worked on him. Just before loading him up into the ambulance, I asked them to stop. I wanted to speak with him. I got down close to his face, looked him in the eyes and said, "You had a fall and they are taking you to Stanford. I will meet you there." He replied, "Why am I going to Stanford?" All the fire personal and ambulance drivers immediately relaxed. He had spoken for the first time. He was coherent.

Head injury was a concern which is why they took him to the trauma unit at Stanford. I gathered my meds, toothbrush, cell phones, Michael's wallet and Leslie drove me over the hill in horrible Sunday traffic to the hospital. It was right out of a TV show: high security, a swearing relative, a fight between strangers. When it was safe, I approached the desk to get in to see Michael. I smiled and said, "You don't get paid enough. You guys handled that amazingly well." They all smiled. Kindness paid off once again when I messed up and left the waiting room as a nurse asked to me wait outside. I thought out with the masses instead of just in the waiting room. When I tried to get back in while behind a line a people, they just waved me through.

Michael was total awake and was anxious to hear the entire story. He had felt like his sugar was low, went into the house for a piece of cheese and did not even remember going into the garage much less seeing Joe.

Joe told me that he was driving by, stopped to say hello, Michael came out of the garage in an odd manor and just collapsed, hitting his head so hard he could hear the thump. I arrived moments later.

Stanford thought it may be an underlying heart issue. He did this same sort of thing about 10 years ago. Everything was about the same. We think the sugar from the pancakes plus the maple syrup drove his sugars high then, two hours later, he crashed.

Since he has Kaiser, they were getting ready to move him. Nothing goes quickly in medicine so Leslie drove us home, I gathered other items, Ron and Susan made me eat some food with them then I headed back over the pass to Kaiser. They ran an EKG and did not believe it was heart related. They thought it may be something in his brain. We still believe it was low blood sugar driven.

They released him last night, we have an appointment with a neurologist this morning and the adventure continues. We have contacted no one. William is in Norway. There is nothing he can do and I know that he will dump the tour and fly home. Really, there is nothing he can do at this point. When we know the cause, we will contact him. I will phone mom within minutes to let her know that I will not be with her today.

I suddenly am the caretaker. I am worried but remaining calm for him. He was dizzy this morning, tried to have some coffee and just vomited. We waited a bit, he sipped some water and it stayed down so we just tried some yogurt. He said it tasted great and seemed to settled well.

I will update tomorrow. Here we go.

Sunday, November 2, 2014

Calm Before the Storm

New shelf paper in the kitchen cabinets! Inside windows are clean! Those were the two big chores finished yesterday. It was so much fun to clean out the kitchen drawers and cabinets. I even took all the cocktail and water glasses and ran them through a quick dishwasher cycle. I did wear oxygen while washing the windows and was sweaty and pooped when it was finished. With all this activity preparing for their visit, I am not worried about my weigh-in visit with the Weight Management doctor on Wednesday. It is a nice feeling.

Later last evening, the phone rang. It was Anna. Instead of Saturday, they wanted to know if they could come on Friday. Sure! I need to re-do all my lists today! Also today, there is a Formula 1 race from Austin, Texas for the third year. It is a fantastic track with long straightaways and hills! Should be a great race.

Sunday. A quiet day before a very busy week ahead.

Saturday, November 1, 2014

Halloween Wrap-Up

It was rather amazing to see Winnie and Oliver dressed up as a gymnast and a Ninja Turtle last evening. I hadn't seen both together for quite some time. She was suddenly such a "young woman" who said to me, "Now that I am a certain age, we can have interesting conversations." And meant it. She is going to be 8-years old next month! Oliver, on the other hand, was every inch a four-year-old boy! Since sugar is a rare event at their house, he was trying to quickly eat as much candy as possible. Massive amount of sugar was ingested! After fancy cookies and their Halloween candies, they hauled mom and dad around the neighborhood to gather other goodies! Their dad is very tall and was dressed as a Ninja Turtle, too! Hilarious!

They came back to the house and the adults all enjoyed an espresso while the kids sorted their stash. We vowed to see each other sometime during the Thanksgiving weekend. Such great kids. Such a nice family.

The weather has suddenly changed. It was 63 in the house this morning so we turned on the heater for the first time this season. We try to hold off until November 1st as the rates change. It is currently raining. My plan for the day includes new shelf paper and cleaning of all the kitchen cabinets as well as washing the inside of all the windows in the house. To get it done, I will need to wear the long hose from the oxygen tank in the garage and crank it up. It is going to be a workout with plenty of breaks. A week from today, Anna and Doug arrive. Let the countdown begin!