Papa's Got a Brand New Bag

The year 2008 was definitely Year of the Pillow. I went crazy making pillows for all our freshly painted rooms: the 3-season porch, our bedroom and Wilson's room. Last year, 2009, I'll call The Year of Soap with a small dash of ottoman slip-covering towards the end, culminating with the now infamous sew-through-my-right-index-finger incident. They say you have to get right back on the horse after you're thrown, so I did make 2 more after the disastrous first one, thankfully without any bodily harm.

Twenty-ten is starting off as another year of soap, a couple quilts and my latest favorite project: bags. Now that the trend to BYO shopping bags to stores is catching on, you really can't have too many bags. It's a great way to recycle old shirts, sheets and jeans. I have to confess I did purchase some heavy canvas for the one pictured but I am using up some of my fabric stockpile for the linings. A little recycling is better than none, right?

(drama) Queen for a Day

I tend to be pretty understated when it comes right down to it, particularly when it comes to my health and what's going on in my life. I don't dare say I've never exaggerated, but when asked how I'm feeling I'll say "good" unless I'm on my deathbed and "things are fine" unless my life is in complete chaos. It's partly my way of coping with things (denial) and partly my dislike for drama.

After being re-invited to Twitter yesterday I signed in for the first time since last August. In order for Twitter to be interesting it seems that one needs to have several active friends in order to encourage checking in and activity of one's own. Partly due to my age, lack of interest and lack of active friends I haven't used it very much since I registered about a year ago. Fast forward to yesterday: I signed in and was shocked to see that 2 of the 5 close friends I originally signed up with have died in the past 5 months. Not a very good record: 2 out of 5 people!

Ok, my circumstance is somewhat unique, both those friends had CF. In fact, a fairly large percentage of my friends have CF - thereby exposing me to morbidity and mortality that most people in their mid-40s wouldn't ordinarily be around. Sure, many people know one or two friends who have had some type of cancer, diabetes, or another disease, but it IS uncommon for someone to have so many chronically ill and dead friends at a relatively young age. I'm not whining but just commenting on an aspect of my life that is unusual- in an understated way, of course!

Next- a little rant. If you're anti-universal health care you might want to stop reading at this point or risk elevating your blood pressure. There is little in life that I get passionate about, but I do have a few issues that will cause me to step up on the proverbial soapbox. Health care is one of them. I know that the health care bill in the senate is a huge disaster, filled with pork projects and too many pages for any one person to read. In some ways I can't blame people for being against it - nobody truly knows (even the senators!) what is actually in this bill. From my understanding of it, the only benefit for the people would be that insurance companies can no longer deny you for preexisting conditions. A step in the right direction, but way too little, way too late.

I honestly can't understand how people could believe that a for-profit health care is good for us. The insurance companies are in it to make money for their shareholders, and in order to do that they use a business model- take in more money than they spend, bottom line. "Customers" - aka patients- are given only what the insurance companies want to give, and their profits increase if expensive medical procedures and drugs are not covered. Preexisting condition? You may have to wait a year in order to receive benefits. In the long run this doesn't save insurance companies all that much, but it does deter patients from using that insurance carrier or plan. No longer their problem! Let another company deal with it. But what happens if nobody wants to deal with it? Tough luck.

Plans can be cancelled on a whim. Sure, not one individual's plan, because that's discrimination, but what's to stop a company from seeing which groups are the biggest drain on resources and canceling an entire group policy? Nothing. Believe me, it's happened. Drug benefits change from year to year. Medications that are deemed too expensive are dropped from policies and cheaper, possibly less effective alternatives are mandated. It's not what is best for the patient, but what is best for the company paying for the medication. Insurance companies have a huge lobby in Washington and they are not interested in seeing a government sponsored health plan which would compete with them, forcing them to lower costs. Not so good for profits, is it?

The general population is afraid of a government sponsored health care system. Why? I'm honestly not sure other than what I've heard people say: "I don't want the government dictating my health care", " I don't want to give the government any more of my money", " I don't want to pay higher taxes", "rationed care", "death panels", and "capitalism is why our health care system is the best in the world".

Just one second, here. How is giving insurance companies any different than paying into a government health care plan? Don't your insurance premiums go up every year? I know mine do. I currently pay over $850/month for my health insurance, which is 2/3 of my disability income. Wouldn't you rather have the money go to a plan that will cover every legal American citizen? In my mind the higher taxes and not wanting to give money to the government argument is an invalid one, in that I doubt anyone of my income level would end up paying such a large portion of their (and their spouse's) income to a national health care system, which would not be concerned with profit, but ensuring that everyone had the health care they needed.

Rationed care? Aren't insurance companies guilty of rationed care? Of course they are: they decide which tests, procedures and drugs to cover by how much they want to pay out. If that isn't the definition of rationed care, I don't know what is. How can a company that is for profit be unbiased in deciding who and what to cover? It's a complete conflict of interest.

Would a national health care system decrease the quality of our health care? The jury is out on that one for me. Contrary to popular belief, America does not have the longest average lifespan in the world. It's true. Granted, there are many contributing factors, such as lifestyle, diet and genetics, but I don't think anyone would argue that the availability and quality of health care directly affects lifespan. I'm convinced that if everyone had access to quality, affordable care and didn't have to depend upon emergency rooms for acute care in place of preventative care (which WE pay for in our insurance premiums) the average lifespan would improve. Prevention and education are key to avoiding more serious (and expensive) problems.

So, in a nutshell, I believe that having universal health care coverage would benefit all Americans. Those of us who are insured and pay high premiums for said insurance would at least have the money we fork over go to ensuring everyone is covered. We'd no longer have to worry that our insurance may drop us, no longer cover one of our drugs, or deny a particular procedure or test. Imagine living in a country where you didn't have to worry about losing your job- and therefore your insurance. The first things I hear people say when they worry about layoffs or changing jobs are "what will I do for insurance?" or "how can I afford COBRA on unemployment?" What if that wasn't a concern? Somehow, every other industrialized country in the world manages to do this, yet we are unable. What's wrong with this picture?

Last Two

Yesterday afternoon I made the last 2 batches of soap for this summer, which will allow them plenty of time to cure. The gift certificate my brother gave me for Christmas allowed me the freedom to order scents I might not have otherwise, and I went outside my comfort zone: spearmint-eucalyptus, pineapple-cilantro, sage-lemongrass and vervain olive blossom, for example. The above are pineapple-cilantro and spearmint-eucalyptus.

I also ordered some pigments and oxides, which are purified mineral colorants, as opposed to the herbal ones I was using in the past. They give a more vibrant and defined color for swirling and are a nice complement to the natural herbal colors. The spearmint soap is a green oxide with a darker green swirl throughout, which won't be visible until the soap is cut. I'm anxious to see how it looks but need to wait until it is firm enough. Patience is a virtue... The pineapple is a pale herbal yellow, with a green swirl throughout and darker yellow and green swirls on top. I was hoping they'd look a bit more like pineapples, but I'm afraid they don't bear much resemblance to the fruit.

I decided to make small batches of several different types for this spring and summer, rather than loads of just a few as I did last year. I'm happy with the fragrances I experimented with and will definitely continue to experiment a bit more with each batch. Practice really is the best teacher.

One Resolution

Each year around this time many of us resolve to make ourselves perfect. We're going to lose that 10lbs, eat better, go to the gym, have more patience, be on time, grow our own food, blah, blah, blah. To date, I've only made 2 successful resolutions, the first being to take 20 minutes each day doing something I want to do. Not something I need to do or that has to get done, but something just for me.

The other one, which I made years ago, was to take better care of myself, though at the time I made this resolution I didn't understand that it wasn't a "good" goal. Somehow I stumbled through and was able to keep it, by breaking it down into some smaller goals.

This isn't to say that I'm perfect- far from it. But, I can say that for most of the time I'm able to keep up with these two. While I was in the hospital I learned the key to my success from one of my physical therapists, who told me that in order for a goal to be a a success it has to be SMART.

S- Specific

M-Measurable

A-Attainable

R- Realistic

T- Timely

So obvious! Yet when setting goals in the past, I've never considered this acronym.

In examining the two I have been able to stick with, it's easy to see why these are the resolutions that have worked for me. The first is specific, measurable, attainable, realistic and timely. The second: "I'm going to take better care of myself" is a tough one because it's not well defined. By simplifying the statement to "I will exercise at least 4 times a week for at least 30 minutes/session; I will do my twice daily treatments at least 6 days a week; I will eat at least 3 meals/day; I will get at least 7 hours of sleep/night" it becomes measurable, specific and realistic.

So thanks to my PT, Katie, I now am able to make a realistic resolution for 2010. In the past, I've resolved to start meditating. Sure, a nice idea, but an intimidating one. How long to sit? How to find the time? It was easy to skip it, thinking "I just don't have 30 minutes to spend sitting. I'll do it tomorrow". Therefore, the one resolution I am making this year is that I will meditate for at least 5 minutes/day, immediately following my exercise. Is it SMART? Yep. I've been doing it for 9 days so far and can say I actually look forward to it. Five minutes is next to nothing; I can do that!

Hopefully, next year at this time, I'll be able to say I have 3 successful resolutions under my belt.

A Constant

As I was doing the post-Christmas cleaning of my bureau, I found an envelope of old cards in my sweater drawer. I'd come across them from time to time when looking for one one of the seldom-worn tops that gets buried at the bottom, only to shuffle the folder around without opening it or reading them. This time I thought I'd look through them, expecting to find a couple written in Wilson's grade-school handwriting and a few from Joe.

There were a few from my grandmothers, signed "with oh so much love" and "love and kisses" which brought tears to my eyes. Sure enough, there were several from Wilson, some even pre-preschool, filled out by Joe. And then there was a stack from Joe, which dated back to our pre-marriage days. If these cards had been cars they would be classified as antiques!

Reading through them brought back so many of the memories that lie buried in the recesses of my mind. Yes, we have a long history together- twenty-some-odd years. There were a few cards from when we first started dating, containing simple words but sincere and sweet sentiments. Somehow, 20 years later they have even more meaning to me than they did at the time- and they did mean a lot back then! They weren't merely nice words written in a romantic moment- when Joe says something, he truly means it and that is a constant I've always been able to count on.

We were so young! Twenty-three and twenty-five years old when we got together. We jumped into marriage with both feet, not hesitating even for a moment. Family started, we were working 7 days a week between the 2 of us, not able to spend much time together. We bought a house, fixed it up, raised Wilson, worked and managed to have lots of good times and a few bad sprinkled in here and there. Ingredients tossed into a pot that make up the stew that is life - a rich and tasty stew that I savor every single day.

Looking back, I feel so lucky to have picked him for my mate. What the hell did I know at 23? Throughout all our lives we evolve, change and grow. I am blessed that we have been able to learn and grow from each other and that somehow, we have stayed in sync. Through thick and think, good times and bad, sickness and health he sticks with me. I am truly the luckiest woman in the world to have found the perfect person for me to go through life with. I guess that is truly what the definition of a soulmate is.

Priorities

Sometimes you have to hit rock bottom in order to make a change and get yourself together again. It may be a life event, a situation, or simply the time of year that will illicit the change. Life consists of many paths and fortunately we are never stuck on one; it's always possible to alter our course or reverse direction depending upon our need.

Putting things in writing always helps me. Sometimes it's a list, a memo or just a bunch of free-floating ideas. I thought it might help keep me focused to put my priorities into writing, just to keep me reminded of the things that are important to me, the things I want to focus on right now.

Family

Cultivating and nurturing existing friendships: the good, bad and ugly

Taking care of myself (physically, emotionally) and not putting the needs of others ahead of my own, unless it's emergent

Prioritizing what is truly important, what can wait and what isn't worth worrying about.

Taking care of my responsibilities (pets, houseplants)

Maintaining a home that I feel comfortable in and that welcomes those I care about

Living within my values

In order to maintain these priorities I will engage in:

meditation daily

yoga

exercise

neb/vest treatments twice a day

volunteer once a week

continue to do typing for Yoshi

set aside time to maintain the house and yard

schedule time with friends, but allow spontaneity

enjoying every moment.

Joy

Family. Friends. A warm house. Enough to eat. What else is there?

Counting Down

One of the reasons I'm really looking forward to getting home on Tuesday........

Our Bite of the Big Apple

Above: The view up 48th street as we were sitting in traffic.

Below: The lit tree at Rockefeller Plaza

Before I wrote my last post devoted to Paul, this was the one I intended to write next. It's taken me

a while to get back on my feet after that to get my thoughts together to post this.

As adventures go, this was an exciting one, and one I'm sure we won't soon forget. We were summonsed to testify as witnesses at a trial on Friday and had planned to make a mini-vacation of it, by staying Friday night and doing a bit of sightseeing on Saturday. We traveled to NYC on Thursday afternoon, in order to have time to meet with the lawyer that evening.

The drive down was uneventful; we made it in 3 1/2 hours and arrived just in time for rush hour but the GPS guided us right to our hotel on Lexington Ave. Unfortunately, the main entrance was on 48th street and we had to drive around the block in order to drop the car off with the valet. It took us quite some time to make it around the "block" as we ended up on a through street that didn't allow turns, but that allowed us to drive by Rockefeller Plaza and see the tree that had just been lit the day before, as well as the throngs of people who were also there to see that site.

We arrived at the main entrance of the hotel like a couple of country bumpkins: shoes flying everywhere, all my medical equipment and several trays of pastries we had brought as gifts for my cousin. Our car was whisked away and we were shown up to our room, which was on the 22nd floor with a pretty view of other buildings, all lit up. Cars driving down 48th street below looked so tiny! After setting into our room we decided to take a walk and get the lay of the land. We walked up 48th, back the way we had driven, to see Rockefeller Plaza, the Christmas tree and the skaters. What a pretty site! People were everywhere, Christmas music was playing outside many stores and there was a festive feel in the air. It was easy to forget the real reason we were in NYC: the trial.

After exploring a bit we met with the lawyer and my relaxed feeling soon turned to panic. Yikes! We were going to be on the stand and questioned about the accident we were witnesses to 5 years ago by both lawyers. I wasn't worried about the plaintiff's lawyer, but was very nervous about the opposing counsel, after hearing he was "ruthless" to the witness on the stand the first day. We were given our depositions to review and instructed to meet the lawyer at the courthouse, in lower Manhattan, at 9:30 the next morning. We were due to testify at 11.

We both re-read our depositions to refresh our memories and retired for the evening. The next morning, not sure how long it would take to get from our hotel to lower Manhattan, we left t 8:30 by cab. It seemed a good omen that we hit all green lights on our way to the courthouse, which was just on the edge of Chinatown. We arrived so early that we had time to walk around the neighborhood and do a bit of shopping at one of the neighborhood shops. When we returned to the courthouse, the lawyer reviewed our depositions and the questions he would be asking us. We were left to wait.

Eleven o'clock rolled around and went to the courtroom where the case was being tried. Joe was called in at 11:30 and questioned on the stand for an hour. I wasn't allowed in the courtroom while he was testifying, but I'm told he did an outstanding job. I was next and was only on the stand for about 30 minutes, 15 of which the lawyers and judge spent outside the courtroom, conferring about lawyerley matters. I was more than relieved when allowed off the stand and the experience was over. Whew! The judge declared it was time for the lunch recess and were excused for 30 minutes.

The sense of relief after being done with the testimony was enormous and we were able to enjoy a quick lunch of Chinese food at a small restaurant in Chinatown. Joe and I decided we would like to be in the courtroom to hear the testimony of one of the expert witnesses, a doctor who had treated the plaintiff since the accident. It was interesting to follow the testimony and second-guess the lawyers.

That evening we had an impromptu dinner of bread, cheese and fruit purchased at Grand Central Market, which was an amazing bazaar of shops all under one roof: butcher, baker, fruit stand, prepared foods, cheese shop, spices.. it was truly a feast for the senses. Unfortunately everyone else was shopping at the same time. With our bellies finally full, the fatigue hit me like a ton of bricks. I needed to crash and we took a cab back to the hotel and I fell sound asleep, only to awaken the next morning to the sad news of my close friend's death. There would be no sightseeing; how could I even consider it after such news? I had some calls to make before posting the news online, at his mother's request.

Friday evening and Saturday morning, before the phone call, I had such a feeling of relief and also satisfaction that we not only survived the experience, but hopefully did a good job and didn't make complete fools of ourselves. Even at this advanced age, I still have plenty of self-doubt, but it's reassuring to know that stressful situations like this can be handled and we not only survive but grow and gain confidence from the experience.

Fly Away, Cystic

The unthinkable has happened. Since we met, I've been preparing myself for this, knowing it would be the biggest blow of all, but the preparation made not a speck of difference. How could it have? I never truly believed it would happen.

Paul is gone. My longstanding cystic buddy. He was at the brink so many times and was able to right himself by force of sheer will, I honestly believed he would do it again this time. He had more lives than 10 cats. He was a cat. A cool cat. He hated water, being touched and was a finicky eater. In the end, though, he was just as human as the rest of us and had finally had enough. He went the way he wanted to: in the comfort of his home, in his favorite easy chair, with his devoted mother by his side.

How do you capture a person's essence with mere words? Paul could. Paul would have. I can't do it. He was a very caring person, at times confused by human relationships and interaction, but that never deterred him. He never stopped reaching out. He was an amazing support and teacher to those in the CF community, often contacting people privately to shed light on a question they asked. He had an amazingly quick wit, was able to find humor in almost any situation and made puns that I sometimes didn't figure out for days. He was one of the most intelligent people I've ever encountered yet never talked down to people. He had the gift of being a natural teacher and no topic was beyond his grasp. I often teased him that if it was physically possible, he would have been able to perform his own double lung transplant, he had researched it so thoroughly.

Another friend said it well: this is the end of an era. Paul was a fixture online, often holding court in the CF2 chatroom, entertaining everyone with his witty banter and offering support to those who needed it. I really can't believe he's gone and probably won't for quite some time.

The biggest burden of CF, for me at least, is not the daily treatments, the hospitalizations or even feeling sick, listless and short of breath; it's saying goodbye to those we meet along the way who touch us profoundly and become part of us through our association.

'Bye, Paul. I hope you know how many people loved you deeply and how many lives you touched. Thanks for being my friend and meeting me at the Terminal; I'll treasure that memory always.

How to Measure?

As we approach the end of another year I find myself assessing and reviewing 2009. Was it good? Was it bad? Certainly a lot of good things happened: Joe found a job after a year of being unemployed, which is a much better fit than his previous one. Wilson is doing well in college, enjoying his classes and has a wonderful group of friends. Our house looks nice and is comfortable after some renovations. My parents are healthy and happy. My brother is in his newly rebuilt house, has a job and is content. We have 3 pets that we love dearly who continue to amuse us with their funny antics.

On the other hand, we lost our beloved Charlotte and my health has been a bit more of a struggle than some years. There have been quite a few losses in the CF community as well, all of which are difficult.

Each day, each month, and each year has its trials, tribulations and triumphs. This is a given: no day, month or year is going to be free of stress, some heartache or conflict. That's just life. How can you compare one year to the next? Each one is unique and will have its share of joy and pain. As long as we're alive that's the price we pay, so best to enjoy every moment while we have it.

Practice Makes Imperfect

There's a reason meditation and living mindfully are referred to as a practice - it is a continuous process; there's really nothing to be achieved, no point at which you are done. Sometimes it will be easier than others and the goal is just to keep at it.

I've been getting a lot of practice with my practice this week in the context of a situation that is beyond my control - something that is typically quite difficult for me. I could allow the issue to dominate my thoughts, but what would that do? I can't make things happen any faster than they are meant to evolve; the key is to be able to accept the things as they occur and take them as they come. My mind tends to leap forward, playing out different scenarios that have yet to happen- hoping to prepare itself against any possibility, planning my reaction in advance as a way to keep control over the situation. Yet, most often, dwelling on events in anticipation rarely does any good. I have no way to predict the future and it only causes me to lose my focus on what is before me at the moment. The present is where my attention belongs because it's the only thing that is. Everything else is just thoughts to keep my mind busy and distracted.

There are so many variables in life over which we have no control. Yes, we have control over ourselves and our reactions, but anything else is really a delusion. Oftentimes the more control we try to have over situations and people the less we actually have. I've found that letting go and not trying to control things, although scary, is a good way for me to decrease my stress level in the long run. I'm still practicing!

How Bazaar

The word bartering conjures up images of an open market, goods and produce being swapped for services or assets, people haggling, making deals and trading. It doesn't strike me as something that has a place in today's society, though Wikipedia tells me that it is and that there are internet sites set up specifically for this purpose.

The idea has always intrigued me and my first experience with it was this past summer when we ran into a Swiss baker at the Salem Farmer's market that Joe was acquainted with. We were buying some organic bread when Joe learned that Armand loves hand made soap and suggested a trade. Armand was more than happy, as were we, in that we got 2 delicious loaves of organic, artisanal bread for just 2 bars of soap. What a deal!

Last evening, at the "Don't Look a Gift Pig in the Eye" Holiday fair, the woman at the table next to me was a jewelry designer that I had met last summer at the Jazz and Soul Festival. She had purchased some soaps then and said she was going to buy some more last night. I told her I'd love to trade some soap for a piece of her jewelry, and she was enthusiastic. Sure enough, at the end of the night she came and picked out 4 bars of soap and I found a gorgeous pair of dangly blue earrings and a Tibetan jade key ring. This is fun!

Three Percent

There's a commercial that has been on TV recently which talks about cutting down on our electrical usage by 3% a year for the next 10 years. A good way to cut down on carbon emissions, consumption and our electrical bills. What a great idea! Three percent isn't all that much and who doesn't love a challenge?

Our average electrical bill is about $80/month. To save 3% would be about $2.50 each month. Not so much, but over the course of a year and increased by 3% each following year, it would make a difference. A few years ago we switched out all our light bulbs (much to Joe's dismay!) to CFLs, even the outdoor ones. Sure, they take a bit of time to reach max brightness, needing a few minutes to warm up, but the decrease in our electrical bill was noticeable. We keep our automatic thermostat at 63 during the day and 58 at night. We don't heat the upstairs. We've switched out (again, to Joe's dismay) our shower heads to low-flow ones. Some things are a bigger sacrifice than others, no doubt about it.

So other than turning off lights when we leave the room, walking to shops when possible, using rain barrels for watering the gardens and replacing our old appliances with energy star approved models as they wear out, I'm wondering what else we can do to save electricity and resources? Suggestions are welcome. Thanks!

Before the Fall

Each year around this time I try to remember to get a photo of the Japanese Maple in front of our house, and each year the leaves have fallen before I get around to it. But not this year, this year is different; yesterday I grabbed the camera after a woman walking by with her dog commented on the great color and I was able to catch the image before the first fiery red leaf fell off.

In the spring the tree produces lovely reddish-maroon leaves, they're pretty but not stunning. During the last week of October, on cue, the leaves go from "nice" to an amazing fiery red before the leaves curl up and fall off.

We also have our outdoor lights up and functioning after 8 weeks of no lighting-- just in time for Halloween and the trick-or-treaters. I'm so happy with how the house looks and the Japanese Maple is the icing on the cake.