Living Well with a Bad Diagnosis - Lung Disease

Sunday, July 31, 2011

Relatives To Arrive


Today is the day. Everything is done. I am showered and dressed and ready to go. It is only morning. It is going to be a long wait as they aren’t due until 3:00ish. Rats!

I have been hoping and wishing for some sun for them. At the moment, it is foggy but not wet or windy.

The prosecco is chilled. The cocktail makings are ready. Water bottles are in the refrigerator. 

I am pacing.

We have not had real company to our house in a long time, especially ones that have a 4-year old with them.

The goal is to appear that everything was very easy, I effortlessly threw it all together and have a sense of calmness surrounding me. I have learned that if the hostess is having fun, everyone is having fun.

I feel some singing may happen. Michael has the CD player on shuffle and there is a lot of Elvis on it! We might just have to sing along!

Will report tomorrow how is all went. I sure it will be fine. I hope….

Saturday, July 30, 2011

The Countdown Begins

The relatives are coming on mid-Sunday afternoon. It has been a bit crazy. Friday, after rehab, I bought all the food at Trader Joe’s, Safeway and the organic market in town. I also bought two loaves of bread at Il Fornaio for the panzanella salad and the two small chickens and meat that I had pre-ordered from the butcher.

Since Friday, the chickens have been salted and pieces of my own garden grown rosemary have been tucked under the skin for flavor. This will allow the chickens to have an amazingly deep flavor. The salt will be wiped away and the chickens will be totally dried right before they are popped into the oven. They are cooked in hot skillets in a preheated 500-degree oven and turned every 15 minutes for 45 minutes. This allows the skin to be very crispy yet the chicken is very tender.

After that, I cleaned the house, which I have not done in years. I needed oxygen to do it all. So happy we have a housekeeper every two weeks because I don’t think I could keep it up on my own anymore.


Today is going to be even crazier. I need to cut and water the gardens, make the Ancho Macho Chili for Monday night, make little Stephen’s Kraft Mac and Cheese and finish my cooking day by baking a praline covered chocolate cake.

I will sleep like a baby tonight!

Friday, July 29, 2011

Talking Recipes

While in the bank disputing the fraudulent charges on our credit card bill, I had a great chat with the manager. She has been involved in my diagnosis and illness from the beginning.

She is a very tall woman who is just about 100 pounds heavier than I am right now.

After we dealt with the stolen credit card information, she asked a lot of questions about my low fat, low carb diet. I finally offered to print all of the recipes I have collected from the Internet and drop them off to her on Monday.

I scour the Internet for new recipes. I like Atkins but they have too much fat and calories. I often can adjust their recipes – using low fat cheese and nonfat sour cream, for an example. I love Spark People. Great recipes.

I only use recipes that have the nutritional information listed along with the recipe. I still want to check the fat and calories along with the carbs.

If the bank manager cooks from these recipes and stays under 1,200 calories a day, she can really lose some weight very rapidly.

I have tried to talk another friend into trying this diet. She does not want to. She wants her carbs. She does not want to exercise but, lately she has been mall walking for one mile. She should be doing an hour. Minimum. 

I hope that I can inspire both of them. I hope that I can offer some good information to them. I hope they can find the confidence and strength to put themselves first in their lives and begin to change it for the better.

I know how hard it is.

Thursday, July 28, 2011

Wishing for Karma Payback

Someone stole our credit card number. We don’t know where. We don’t know when. We don’t know how. We never use it other than when we travel. We only have one.

When I opened the credit card bill last Friday afternoon, I was shocked to see the amount. It was about $600.00 higher that I expected. It became immediately clear what happened.

There was a charge in Australia on one day and another in Dublin, Ireland ten days later.

I ran to our bank, where I am well known (one of the perks of living in a small town). The manager cancelled the card and called to dispute the charges. A form will be sent to me and there should be no problem reversing the charges.

After the bank, I phoned Lifelock. I love Lifelock. They put a fraud alert on my accounts.

But, I want more. I want people who use stolen credit card information and other ID thieves to suffer. I want karma payback.

Though I will never see it, somehow that thought makes me feel a bit better.

Wednesday, July 27, 2011

A Different Monday

Such a different day than I am used to having on a Monday. No rehab. Instead, I needed to be home to welcome an electrician to our house to fix the electrical box for the new fountain. He didn’t show up. Ugh! We also need an estimate to install three “shell” sconces in our bedroom. He then promised he would be here Tuesday afternoon.

Winnie was coming for lunch around noon and we were going to cook together. Sloppy Joe’s. I cooked the hamburger ahead so all she had to do was stir in some seasoning, mustard and catsup. Perfect. She is not a meat eater but LOVED it.

Later, she was played a guitar while little brother Oliver danced with himself in a mirror while she sang, “I used to be a human but now I am a robot. Ya, ya, ya.” Hilarious.

We walked to the park around the corner and she confided in me during the walk, “I FINALLY decided who I am going to marry.” She is four-years old.


In the evening, Michael went to Boys Night Out. A bunch of guys met at a restaurant right on the ocean for a Monday night special: A huge bowl of clam chowder, a salad and a beer for $10.00. They sat outside just steps from the ocean under large patio heaters.  It was good for him to hang out with guys. Nice guys.


Not one of our normal days. Rather nice! A day off for fun.

Tuesday, July 26, 2011

Medical Info on the News


After watching CBS This Morning every Sunday beginning at 6:00AM PST, we turn to Fox News to watch Dr. Isadore Rosenfeld. Yes, he is a curmudgeon but I have learned so much watching him for the quick 30 minutes each Sunday morning. Well worth the time.

When he said something this past Sunday, we looked at each other and Michael said, “There you go.”

To paraphrase: The medical field has found that when a person is ill,  a good frame of mind is a benefit to getting better or living longer with a fatal disease. If you are a generally happy person, the body responds to the disease in a positive manner.

I know it is tough to stay positive and happy when dealing with an incurable disease. But, there are choices. Be depressed. Be negative. Be a burden. All of that will negatively affect the way the body reacts to the disease.

But, the reverse is also true.

Stay positive. Stay active. 

Laugh. 

Dance. 

Sing. 

Live.

Monday, July 25, 2011

Rehab and Weight Loss

Photo of recumbent bike
The up side to the weight loss is that I am able to increase my load and time in rehab. Yeah! More muscles to build! More fat to lose!

I am now doing 3.4 miles per hour for 12 minutes on the treadmill, 25 watts for 5 minutes on the arm bike, 75 watts of resistance for 12 minutes of the recumbent bike, lift 9 pound hand weights for two series of 6 exercises and 6 pounds of two sets of 10 pulls on the wall pulley and 2 sets of wall push ups.

The supplemental oxygen during exercise is still at 2 liters but my saturation rate has increased on the treadmill from 91 percent to 98 percent. Remarkable. I attribute it all to the weight loss.

The other odd thing is that as the weight was falling off so quickly, my muscles were revealed. I have muscular thighs! I have guns! Six years of working out six days a week has really paid off. My body has never looked so good. Still such a shock to me.

Sunday, July 24, 2011

Too Much Attention

What 5 pounds of Fat and Muscle looks like!
It is beginning to get uncomfortable. I am not used to all the attention. With the huge weight loss and since I began to wear the new slacks and shorts that fit, people have been swarming me with comments. I say thanks. I say 57 pounds since Christmas. I smile.

Women want to share with me that they really want to lose 10 or 20 pounds and ask how I did it. They all seem so disappointed that there is no magic.

The men don’t care how. They just look at me differently and comment how great I look. I am having a more difficult time with that. I talk with them like I normally do but somehow it all feels so different and not a good different.

Michael and I talked about it. He said I have to get used to it. The weight loss is very dramatic and I look totally differently. He said that he sometimes forgets and then sees me. It has taken him some time to adjust to it as well.

My head is just getting around it. My focus has been on just making it through everyday. Keep moving forward. Keep setting goals. I didn’t take the time to try on clothes or buy any new ones going through the process as it was rather quick. Why waste the money? I never focused on how I looked but only on the BMI numbers.

It was all about hitting numbers on the scale for my lungs. I needed a 25-30 BMI to begin the lung transplant process. That has been the true goal.

I am surprised to catch a glance at myself in store windows or my reflection in the glass in the freezer aisle at the market. It surprises me. Who is that woman?

I know it sounds crazy.

It’s an interesting adjustment. Rather unexpected. Lessons to learn.

Saturday, July 23, 2011

Phone Scam

My mom fell for it. On Wednesday, I was on the treadmill when I heard my phone ringing. It was her. She NEVER calls our cell phones. Apparently, she had called the house then tried to call Michael’s cell phone before trying mine.

“I have a situation here!” she said. Apparently, our son William called her, told her he ran a stoplight and was in jail. He needed bail money. As she put down the phone to get a pencil and paper of where to send the $3,000 bail, they hung up.

She was so worried that William would think she hung up on him.

I immediately told her that it was a scam and reminded her that we had a conversation just two weeks ago about this specific scam. Neither of her grandchildren would ever call and ask for money. They both have plenty. Both also have great relationships with their parents and they would not call her for help. In fact, I don’t think either knows her phone number.

She was so upset. She didn’t believe me that it was not William.

I told her William was on tour and not at home. It was not him plus he is such a good driver, he would NEVER run a stoplight.

She still didn’t believe me.

I told her I would text him and get back to her.

I really didn’t think I would hear from William until the afternoon as he works late hours and sleeps in. So, while in Trader Joe’s, I was shocked to discover that he called me in regards to my text.

He was home. He was taking his car into the dealership for service and we chatted while I was parked on the side of the road. He phoned again while I was in another store then again after I got home. It was a lovely conversation.

During one of our phone breaks, I called mom and told her William was fine. She was so relieved. She had been considering canceling her special luncheon with her girlfriends because she was so upset. I told her to go and warn everyone else.

I thought that maybe I should warn Michael’s mom, Mary. So, I phoned her later in the afternoon. She was so surprised that my mom fell for the scam. She did think it was odd, though, that she too received a phone call earlier in the day. Someone called to tell her she had won $2.5M from the Publisher’s Clearing House Sweepstakes and all she had to do was pay the taxes. Mary drove them crazy and played them so much that they hung up on her!

So please, dear reader, don’t fall for either of these current scams.

Friday, July 22, 2011

FOOD!



Real food. A beautiful rib eye steak and shredded cabbage mixed with a little of Trader Joe’s Goddess dressing. Last night’s dinner. My first food in three months.

The plan: Michael to come home early, get the BBQ going and cook the steak to perfection.

The reality:  Michael got home right at 4:00 and fired up the hardwood charcoal. We waited for it to get nice and hot then threw the steak on for just a few minutes. It was cooked perfectly. We actually began to eat at 5:10.

In the rehab education classes six years ago, we learned to use paper plates instead of expending the energy to take them out of the cabinet, take them to the table, return them to the sink, rinse them, put them in the dishwasher, then return them to the cabinet. Crazy. Paper plates. The best.

But, for our first meal of real food after the 3-month liquid diet, I set the table with real plates and the good silver. Michael even had a celebratory cocktail while cooking.

I called "dibs" for the bone from the steak and enjoyed it along with a very small piece of it, probably 2-3 ozs. I cut into it, ate a small bite and moaned. Yes, moaned. Michael called it the “yummy” sound. We ate very slowly, chewed the meat very thoroughly and savored every morsel.

There was little conversation. None was needed. It was the best food I have ever tasted in my life. Well, for the past three months at least.

Surprisingly, I had no stomach or intestinal problems. The human body at its best.

Afterwards, we sat on the couch in the living room and listened the new CD from the famous group our son has been working with since 2004. Loud. It was fun to listen to it for the first time together.

Tonight was a wonderful and big milestone for both of us. The weight is gone. We begin again.

Thursday, July 21, 2011

Tattoos

My mom is a shopper. With her 83rd birthday drawing closer, it is almost impossible to find a present that she needs or wants. If she needs or wants anything, she stalks it until she finds it at a terrific bargain price. Anything we buy for her, she can always find it better and cheaper.

So, it was great relief when we spoke on the phone earlier this week to discover that she needs summer pajamas and nightgowns. Yipee!

Months ago, she had mentioned that she was thinking about getting her eyebrows tattooed. Yes, my soon-to-be 83 year-old mom. The mom who never allowed her ears to be pierced. The mom who is very conservative in every area of her life.

Recently, she has noticed that her drawn eyebrows are wearing off or seemed to just disappear. She was embarrassed to discover that they did their disappearing act while she was enjoying a lovely group luncheon. That was when the idea of tattoos came to mind.

During our phone conversation, I offered to pay for her tattooed eyebrows as her birthday present. That is when she told me she had already had them done over a month ago!

She LOVES them. She also went  back two times to have them tweaked. They weren’t cheap. I think with the tip and an extra return visit, it was around $350.00.

My mother-in-law Mary has had cosmetic tattoos for well over a decade. Her eyebrows, eyeliner, blush and lipstick are all tattoos. She loves them. She awakens in the morning, throws on moisturizer and is done.

After hearing about my mom, Mary suggested that now she needs to get her lips done. No more lipstick and she will have color all the time! I passed that suggestion along to my mom. We’ll see. I have a feeling she might just do it. I will report back to you, dear reader.

Wednesday, July 20, 2011

More Company

I love Michael’s nephew William. He is the youngest son of Michael’s sister, Anna. She has three children: April was born in the 1970’s, Daniel was born in the 1980’s and William was born in the 1990’s. Anna is 60-years old and William is going to be a senior in high school in September. She must be exhausted.

We have made plan for a visit with Anna, her daughter April and her 4-year old son Stephen at the end of the month. Anna phoned last Friday and asked if they could also bring William up with them.

I am thrilled. I love this kid.

He is an amazing trumpet player and will be the drum major for his marching band next fall. He is bright and interesting. During our first visit in many years, I noticed that most people ignored him. I asked him to play his trumpet for me. He did. Immediately, people began to talk. I stopped him and said, “Start again and we will all just stop and listen.” All focus was on him. This child LOVES the spotlight. There is no lack of ego here. I see a future lawyer.

I always pay a huge amount of attention to him when we are together. We talk music. We talk books. We talk art. I ask a lot of questions of him. I am interested.

When we were alone two years ago, I said, “You are ready to just bust out of here, aren’t you?” He looked at me as though his secret was revealed. I told him to hang in there, work hard and plan to go away to college. He smiled. We were thinking on the same page.

So my job during this visit is to pay attention to April and to pay attention to Stephen and to pay attention to William. I am really going to have to be mindful of each.

I thought I would invite William into my kitchen to help me make the appetizers and dinner. We can also chat alone while working in the kitchen together.

I thought I would walk the tide pools with Stephen and show him the secret garden I shared with Winnie.

I thought I would sit next to April and talk with her as often as possible.

I just can’t wait.

Tuesday, July 19, 2011

Vaccines

Last Friday, I got a call from Dr. C. office, my primary doctor in town, to set up an appointment for the Hepatitis vaccines yesterday afternoon.

How nice that she is on top of it, I thought!

I arrived on time but there was a problem. After watching my doctor, Dr. C., take an older woman back to the exam room and some time passed, she was back in the waiting room to tell me that it was going to be a bit. They had called an ambulance for the woman. The EMTs and ambulance finally arrived, she had to have some papers copied, released her patient to the ambulance personnel then, after about 25 minutes, was ready to see me.

She, too, was stunned by my weight loss and wanted all the details. I noticed that she also had reports in my file from my university hospital. Nice that she is kept in the loop of information, I thought.

I was even more thrilled to hear this:  She had read the reports and it was recommended to her that I have the Hepatitis A and B shots. That is why her office called to arrange the appointment! She had READ the reports!!!!! What a doctor!

Having had shingles three times, I had asked Dr. K. if I should have a shingles vaccine. She said, "YES!” but get it from your primary doctor. So while setting up the appointment,  I asked if I could also have the shingles vaccine at the same time. So, I asked Dr. C. about it. It is $245.00 and no insurance covers it! Come on, guys, that is just a bit too much! So, I passed.

Monday, July 18, 2011

Sharing the Secret

I have been very quiet about my weight loss. I really hate when people tell everyone what they are going to do but never do it! Instead, I like to keep quiet with any changes, work hard at them then surprise everyone when I have actually done it.

My mom knows everything because of her visit with us in February. I had already lost weight, and she noticed. My sister-in-law Betty has been in the loop from the beginning. Everyone else, including the rehab nurses, were in the dark. Finally, when I began the liquid diet, I thought it was wise to tell the RN's in case I had a medical issue with the diet. They have been extremely supportive and, after tasting the supplements, think I am a rock star.

Last week, I told my sister. Last week, I told Michael’s mom.

I am feeling “done” with this project and am only about 8 pounds above where I want to end up after I am stabilized. It is time to share the news. Share the secret.

In other news: We got a text from William last night. There had been a horrible accident at the Bluesfest in Ottawa, Canada when the stage collapsed. He wanted to let us know that he and his entire group were not injured. Scary. Grateful that there seems to be only one serious injury. 

Sunday, July 17, 2011

Finishing Projects


 Anticipating the groups of visitors within the next few weeks, we are finishing projects. House and garden projects.

Last summer, we noticed a problem with some wood siding high up around the top of the fireplace. We removed it and replaced the tar paper underneath it many months ago. Last weekend, Wayne came and fixed it. Thank you, Wayne! Michael painted it last Sunday morning.

When we finished the 3-month fence and garden project last summer, we didn’t want any more workers in our lives but we were not finished. We are finally ready to finish the back garden. We needed a new fountain. To recap: The garden now has an Asian feel to it. We had an Italian three-tiered fountain, which just didn't fit anymore.

Michael found a fountain that is three rocks – the largest being 29 inches – with a hole bored through two of them – snuggled together so the lighted water cascades down all three rocks. Perfect. It is to be finished within the next week or so.

Right now, the old fountain is gone and the 42”x42” hole is ready for the new pond to hold the filter and water. The rocks arrived yesterday. The base will be back filled, the rocks will be placed on the base and the surrounding area will be covered in beautiful smaller rocks and stones today. 

The arbor on the side of the house needs paint. Michael says he is planning to paint it before all the company arrives. He is mega busy at work and is working six days a week. I hope he can do it but I don’t know if that will happen in time for his sister’s visit in early August.

Does the work around the house and garden ever end? I think not!

Saturday, July 16, 2011

Rainy July

We live in an area of the country where the rainy season normally ends in April. There is never any rain during the summer. Never.

It rained yesterday. And the day before. And today. In July.

My normal Saturday gardening adventure will not happen today. Too wet!

The fog along the west coast is thick and just does not burn off during the day. My mom lives 100 miles inland where it is usually 100 degrees throughout most of the summer. The high was 81 yesterday. I wonder how this weather is affecting the wine grapes in the Napa Valley. I also wonder how the weather is affecting the crops in the valley where my mom lives. This valley feeds the entire country. Food prices are sure to rise.

When I went to my university hospital for the ILD meeting on Tuesday, I needed an umbrella to walk to the hospital from the parking garage.

I spoke with Christien in North Carolina on Monday. She is suffering with high heat and high humidity, as is most of the country. Record heat. Later that evening, she phoned to let us hear the katydids and other bugs while standing on her back porch. It was a cacophony of sound. So loud! The more humid, the louder they become.

So, we miss the sun. For the first time in years, I can wear fewer clothing because of my weight loss but I am freezing! More sweatshirts! The high yesterday was 59 degrees. And no sun. And wet.

Welcome to summer!

Friday, July 15, 2011

Sherman Still Ill and Now Dick, Too!

Sherman called after receiving my card. He is still so sick. He is 86-years old. Any illness is dangerous for him. He told me that he is very short of breath and exhausted. This cold with a slight fever has really taken him to his knees.

I am worried.

He will be gone another week from rehab and hopefully will return soon. It is rather dull without him.

I phoned Dick on Tuesday to let him know that I would be at the ILD meeting and not at rehab. It was then I discovered that he had the nasty cold going around. He sounded horrible. So, now I have to worry about him, too.

My rehab boys. They must get well. Soon.

UPDATE July 18, 2012: Almost a year later, neither Sherman or Dick has fully recovered from this virus. Sherman in now on oxygen 24/7 and Dick's numbers have also not improved. It was one nasty virus!

Thursday, July 14, 2011

July's Nutritionist Visit

Photo of Los Osos, CA
Wednesday morning was the final meeting with Mr. B. while I am on the liquid/protein diet. He is such a nice man.

We discussed the process of introducing food back into my life. Real food. A week from today. I gave him my suggested dinner menus for the first week, which he approved.

I have to eat 2.5 meals of supplements and only dinner as real food for the first two week. After that, I have to eat 1.5 meals of the supplements and two meals a day for another two weeks.

He was amazed at the rate that I am stilling losing weight. In my opinion, I think it is all the exercise. He, for the first time, said that I might be able to lose the additional eight pounds I want to hit my personal weight goal because my body is still losing at such a rapid rate. Normally, someone my smaller size does not lose as quickly towards the end of this diet.

Nice.

I had arrived very early and headed to the Starbucks across the street for an unsweetened iced tea before my appointment with David. It was packed as it was RAINING outside. I  headed down the block to the entrance of the hospital. There is a very nice sitting area there but even it was packed!

I found a seat and a woman about my age started a conversation with me. We chatted. Her husband had a very rare larynx cancer – only one of twenty in the country right now. Surgery had removed the tumor but the lymph nodes around the area showed some intrusion. Thus, he was in radiation treatment for eight weeks with only three more weeks to go! They were from Los Osos near Morro Bay and Pismo Beach and staying in a hotel during his treatments. I know their area well because Chip, my brother, actually lived in Los Osos while finished up college at Cal Poly and my Aunt Rita lived in Pismo Beach. They were surprised I knew the area so well.

The three of us had lovely chat, exchanged contact information and I told them I would phone in a few weeks to see how he was doing.

I love when that happens. Meeting interesting people living interesting lives with challenges that they are not letting destroy their lives together.

Wednesday, July 13, 2011

Latest Drug and Treatment Guidelines Discussed at July's ILD Meeting

Piazza in the ancient town of Modena, Italy
I arrived early to the monthly informational and support meeting for people with ILDs at my university hospital. People’s reaction to my weight loss was lovely. Right on time, we met the very famous Italian doctor Dr. Luca Riheldi. Charming. Interesting. Brilliant.

He is from Modena, Italy, which is a small town with great genetics. The brilliant tenor Pavarotti was born and died there and Enzo Ferrari was a native son who helped inspire the racetrack there. Dr. Riheldi was the doctor who held the conferences and headed the writing of the new guidelines for the treatment of Idiopathic Pulmonary Fibrosis (IPF). This disease is by far and away the most populist of all the ILDs.

Dr. Riheldi, using my university hospital’s ILD Clinic as a guide, opened the first clinic for rare lung diseases in Italy and one of just a handful in Europe. They have discovered that 30% of all lung diseases worldwide are Interstitial Lung Diseases. There is just not a proper group of educated people in place to diagnosis and treat the illnesses.

In 2007, his new clinic opened and included a staff of pulmonologist, radiologists and pathologists. He felt that the combine of these three types of specialists are imperative to the proper diagnosis and treatment of ILDs. They meet once a week to discuss every case. These diseases are very difficult to diagnosis properly and, due to the complexity of the diseases, are often misdiagnosed.

To have such a clinic is rare and even in the US, there are only three or four high level Interstitial Lung Disease Clinics, my university hospital being one of those. Thankfully.

Their goal is patient care, education and research. He said all three are needed to maximize knowledge. Publishing in peer review journals is the way research is accepted in the medical world. He has published a lot and told us that my hospital is the #1 publishing hospital in the world for ILDs.

In the EU, he even pushed to include ILDs as part of their yearly acknowledgement of Rare Disease Day. It initially was February 29 (a rare date, indeed!) but they wanted it to be every year, so it is noted on February 28th each year. It brings the spotlight to ILDs.

Back to the writing of the newly adopted first ever guidelines for treatment of IPF:  He told us that he is currently working with a group of doctors to write a similar evidence based management for all other ILDs including mine, which is Hypersensitivity Pneumonitis. Yahoo!! It should be published; I believe he said, in September of this year.

The other exciting news is that he is heading a Phase 2 study for IPF patients only of oral Triple Kinase Inhibitor BIBF 1120 which has greatly slowed the progression of fibrosis in IPF patients. He told us that these enzymes have also been successful in suppressing ovarian cancer in patients for the past 10 years. He said the genes in cancer are close to IPF.

Anyway, the Phase 2 study included 400 patients in Europe only. They ask the FDA if they wanted to be part of it and they declined. Dumb. Now that it has shown such promise, the FDA has decided to be part of the Phase 3 study. The co-head of my hospital’s ILD Clinic is going to be the head of the study in the US.

If you have IPF, try to get into this study. The charts he showed us were amazing. It nearly stopped the progression of fibrosis. The only serious side effect seemed to be issues with the G.I. Tract.

All of my readers with an ILD, hang in there. A new drug is coming down the pike to slow down the progression of fibrosis, the nemesis of all ILDs. The future looks brighter.

Tuesday, July 12, 2011

Weight Management Group Doctor July Check-In

The early morning meeting went well. Dr. M-J was as lovely as always. She was thrilled with the amount of weight I have been able to lose. Many try but some can't finished it, as the liquid diet is extremely difficult. I left feeling very proud of myself.

She did warn me that, while eating my first week of real food, that I will want larger quantities of food after being on the 3-month liquid/protein bar diet. I must be mindful of this. This must not happen. I understand.

Even though I HATE the food I have been eating for the past 3-months, it was rather nice not to have to think about food. I lost weight consistently without thought. It just happened. Now, I have to go back to planning, buying and cooking food.  It has been a nice vacation.

But, I want food. Real food. Desperately. Dr. M-J warned me to eat very slowly and drink water between bites. It will taste soooo good I might want to overeat. In our house, I buy just enough food for perfect portions for our meals. There are never leftovers. Everything is measured. I really think I will be able to handle it.

We’ll see. The re-feeding begins on Thursday, July 21st with half of a rib-eye steak and cabbage.

I meet with the nutritionist Mr. B. tomorrow.

Monday, July 11, 2011

The Virus is Still Visiting

The virus. It's still here. It's been almost a month for me. Michael is just now recovered though he still coughs every once in a while. 

I was still not well but returned to rehab last week. The coughing at night and the nose blowing during the day continued.

I am so sick of being sick.

Along with those lovely symptoms, I was on the antibiotic Augmentin. There was a major side effect: diarrhea. It was horrible. Every day. Sometimes 8-10 times a day. Finally, the seven days of taking that drug was over a week ago and I have not had any diarrhea since then.

On the upside, I think it helped with my weight loss! It still was very uncomfortable and I needed to be near a bathroom at all times.

I plan to take it easy this week. I don’t want the virus to gather any strength to return and haunt me for a few more weeks!

So, off to the two doctor appointments and one ILD meeting this week as well as rehab. Maybe even a visit from Winnie at the end of the week.

Sunday, July 10, 2011

Discovering New Bones

We flipped the mattress again last week and the last few nights I had noticed a lump. I would adjust in my sleep but the stupid lump was always there. Nuts. Do we need a new mattress? We just bought this excellent one just five years ago.

With apologies to the mattress, I discovered the cause of the lump. It was me.

Last night, I felt the lump before drifting off to sleep and hopped out of bed to search for the problem. I couldn’t find it. Jumped back in, it was there again.

It took a moment. Then I felt my lower back where the lump had been. There was a large bone. It was my tailbone or coccyx. I had not felt it for years.

I have to adjust to feeling the bones that are emerging after the release of the layers of fat. Suddenly, I see my collarbones, shoulders, hip bones, tiny wrists and, due to all the exercise during the past six years, my thighs are suddenly looking great. What a shock!

I feel like an archaeologist making new discoveries. 

Saturday, July 9, 2011

Doctor, ILD Meeting and Nutritionist

It is going to be a long three days with many miles of driving into the city each of the three days. Early Monday morning, I will meet with the doctor in charge of my weight loss program at the satellite hospital deeper in the city. It takes a minimum of an hour to work my way through the city and to find a parking space. Stress.

Tuesday, the Interstitial Lung Disease (ILD) support group is meeting at my university hospital also in the city. It will feature Dr. Luca Richeldi who is an expert in ILD. It should be interesting. I also placed a truly final order for my liquid/protein bar diet food to get me through the month of transitioning into real food meals. 

Wednesday, back to the other further away hospital in the city to have my final visit with the nutritionist while I am on the liquid/protein bar diet. We will talk about transitioning into real food and I will reveal my menu plans for the first week. Hopefully, he will approve everything.

Hundreds of miles of driving. Lots to learn. A busy few days.

Friday, July 8, 2011

We Begin



The re-socialization is coming. We are beginning to book guests.

Michael’s sister Anna, her daughter April and her 3-year old son Stephen are booked to visit after lunch on Sunday, July 31st to noon on Wednesday, August 3rd. They will be staying in a hotel near Winnie, which has an indoor pool for Stephen. He will have a ball.

They are actually driving up from Riverside County on Friday to stay with the twin a few days.

I am beginning to make plans.

Sunday, we will have appetizers and cocktails in the garden before dinner. The next morning, we will drive down to the little town south of us to visit the goats, taste the fresh goat cheese and have a lunch of artichoke soup. Dinner that night will be the famous Ancho Macho Chili with mashed potatoes and cabbage. Tuesday, I will show Stephen the hidden garden and the tide pools in the ocean. Dinner will be the best fish tacos at a local joint.

The next booking – my mom for her birthday in mid-August. After that, the list is growing.

Thursday, July 7, 2011

Naked?


I may be soon! I have no clothing that comes close to fitting properly. The jeans I bought for our road trip after I had lost 15 pounds now fall off without unzipping them! Dangerous! I shouldn’t be allowed out in public!

Make no mistake, I am not complaining. The weight loss has been remarkable and very fast. Imagine: 50  pounds in just over 6 months. It has been so fast that I have not been able to adjust my mind to my new body. I am still shocked to awaken each morning to discover a smaller version of myself. Rather strange. I really have to get used to it. Again, not complaining!

I was trying not to buy anything until I was completely finished working with the nutritionist. That is not going to happen as I really don’t have anything to wear. I am planning to buy jeans today either 3-4 sizes smaller, making sure they are a little tight as I expect to lose another 5-8 pounds in the next two weeks. I also want to buy a pair of nice black workout pants for the gym and to wear with a jacket. These two pieces should take me through the next couple of months.

But, I also need a sweater. I haven’t had a sweater in years. With a lumpy body, I always wore very tailored jackets. Now I can wear sweaters again. A nice cotton knit. On sale, I hope. And I need a new bathrobe. Mine totally wraps twice around my body. And a t-shirt. A colored well fitted t-shirt.

I fear that the buying is about to begin. Ready or not.

Wednesday, July 6, 2011

Obsessed with the Trial

I guess it is being called the trial of the century. The Casey Anthony trial. I have watched the process the entire way through. By the time the closing arguments were finished, I was exhausted.

I have recently learned that both Michael’s mom Mary and my mom were also obsessed with the trial. We have been e-mailing and phoning and sharing our opinions. We all believed she is guilty. We disagree what the jury will do. Someone believed they will not convict. Two of us believed they would.

Death penality? None of us believed that will happen. Life? Maybe. Manslaughter? Probably.

During the jury process, I questioned if I would be able to convict someone to death. It would have to be a clear case of murder. The evidence would have to be indisbutable. But still. I don’t know if I could condemn someone.

Maybe.

Mary texted me when they announced that a verdict had been reached. I was at Safeway before heading to rehab. I quickly drove home for the shocking verdict. It was hard to watch the celebration while thinking that if she didn’t have a hand in the death of that child, who did? 

A child is dead.

Tuesday, July 5, 2011

Dreaming of Real Food for Week #1

Fifteen more days of this horrible liquid/protein bar diet. It is getting close to the time when I can eat one meal a day of real food. Real low-carb, low fat food. I can't wait.

I have made some decisions about our first week. On Thursday, July 21st, the first meal will be a dinner of a really good rib-eye steak and cabbage. I love shredded cabbage tossed lightly with a low-carb, low fat dressing. Michael and I will split the steak.

That first week will include half of a chicken breast seasoned with taco seasoning served over lettuce, topped with a tablespoon of non-fat sour cream, guacamole and salsa. This is less than 300 calories and only has 3g fat. I can’t wait.

Chili. I love chili. I found a recipe that has no beans and is low-carb, low fat that sounds really good. It also is served over greens, topped with low fat shredded cheese, nonfat sour cream and chopped onions. This recipe is 292 calories per serving and 5g carbs.

Shrimp. I also love shrimp. Since being on this diet, I found a recipe in a magazine for Basque-style shrimp. It is made with a chili powder rubbed shrimp cooked and served over a cold sauce of garlic, poblano and Serrano chilies, bay leaves, Italian parsley, olive oil, sherry vinegar, fresh oregano and fresh basil. Really low fat and very low-carb: 281 calories and 4 g. carbs.  We will also serve this with cabbage.

And finally, I have been craving pasta. At our organic food store, there are Japanese noodles that are no-carb because they are made with tofu instead of flour. I will make real noodles for Michael but I want my own spaghetti sauce made with ground beef, onions, mushrooms and a good tomato sauce.

Each recipe serves two nights of dinner for the both of us. Michael, who has been eating his own cooking, is also looking forward to my return to the kitchen.

Monday, July 4, 2011

Happy 4th


I hope you are enjoying your families today. It is a time for picnics and parades and hot dogs and fireworks. We are going to drive to the top of a private mountain with friends at dusk and enjoy the faraway fireworks without the crowds and without the traffic.

We worked in the yards yesterday but mostly sat under the huge umbrella in the sunny back yard and just enjoyed the warmth and the sun on our legs. Both of us are still fighting the virus so we are far from 100%. Our other plans today are to be here at home and in the garden, together, enjoying the fruits of our labor.

Happy 4th of July.

Sunday, July 3, 2011

Interstitial Lung Disease (ILD) Meeting Dates


I was just notified of two upcoming ILD informational support group meetings. They are not to be missed! I am so excited.

Dr. Luca Richeldi
The first one is scheduled for July 12th with Dr. Luca Richeldi who is a visiting professor from Modena, Italy. He is a world expert in ILD and was a key figure in developing the new Idiopathic Pulmonary Fibrosis (IPF) guidelines. He will speak about ILDs.

The second one is scheduled for September 13th with Dr. Paul Blanc who is an expert in exposure-related interstitial lung disease (ILD) such as mine! He will talk about Hypersensitivity Pneumonitis and occupational lung disease. I cannot miss this meeting!

I feel very lucky to have both of these renown men in a room to share the latest information regarding my specific disease and to maybe, just maybe, give us some hope of future treatments other than lung transplants. I will take copious notes and report back to you, dear reader.

Saturday, July 2, 2011

June Rain


So unusual here in northern California: Rain in June. Just doesn’t happen. It is here. My garden is very happy since it was a long very gentle rain. 








As all weather systems head east, there is now snow in the mountains. In June. Let the skiing begin!

The area near my brother in New Mexico is suffering through a drought and the huge fires are out of control. There is no moisture and high humidity. They were hoping for rain.

Our house is blessed with huge windows facing south and west and as we have no draperies, the sun warms us in the cold winter. These floor to ceiling windows bring the gardens into the house so it is imperative that the windows are clean. This weekend, I am going to wash the windows so the garden will sparkle even brighter!