Monday, September 29, 2008

Brand New Day

Monday mornings, who likes them? When I was working I always dreaded Fridays, not because I loved my job so much, but because I worked on Saturday and Sunday. Sunday night was a huge relief...aaah, another 5 days off. Fridays? The knot in my stomach and the sinking feeling that I had to go in to work for the next couple days. Now that I'm no longer employed outside the home (how politically correct!) and that J is home, one day sort of blends in to the next. The only way I know its a weekend or not is if we get together with friends who work full time.

Last night we got together with 2 of our best friends and had a wonderful fall dinner. Spicy-rubbed pork, roasted rosemary and olive oil potatoes and fresh veggies from the farmer's market. A delicious meal capped off with steaming mugs of tea and a hot, right-out-of-the-0ven apple crisp with melting vanilla ice cream. It was a perfect evening, good food, good conversation and a great way to end the week.

Maybe that is why I'm starting off this new week with a more positive feeling? Or perhaps its that there are quite a few things scheduled this week.. doctor, dentist and hair appointments, J's parents are coming to stay for a night and W will be home to see them. The house is organized, tidy and clean with fresh paint everywhere. We've cleaned out a lot of crap and are paring down to the things that are meaningful and essential. I consider this one small step in the direction of how I want to live my life: more simply. Cutting out the clutter and doing what makes me feel good. I'm not talking pure hedonism here, but more to the point of living out my values. That definitely makes me feel good. As the saying goes: Do what you like, like what you do.

Sunday, September 28, 2008

Two Steps Forward, One Step Back

The home improvements are winding down, I'm amazed at how much J and I have gotten done. Not only is there fresh paint throughout, there is also a new sense of organization. Lots of clutter has been removed and it feels good. J likes to joke that he is a "collector of shit"... which is true! The basement was filled with useless odds and ends and broken things, which he thought might be of use someday. After years of just storing these treasures he has cleaned them out and tossed them into the trash. There's something cathartic about getting rid of old junk! I'm trying to do the same, going through closets and drawers and getting rid of things we haven't used in years.

There is also some mental housecleaning going on at the same time, my moods have been labile and I'm trying to figure out where I'm going from here. There have been numerous changes in the past year: Wilson's departure from home, J's leaving his job and being around the house full time, my mom's declining heath and the loss of a beloved pet. I'm not one to dwell on the glass being half-empty, but on the stress-o-meter all these things have added up. On top of all the aforementioned stressors our trip this summer further complicated matters. Clearly, there is more housecleaning to do!

In order to help figure out the direction of my life I made a list of the things that were most imp0rtant to me. My family, friends, community, home, garden, pets all came to mind immediately. So what makes me happy? I know I do well with routine, always have. A good balance between time alone and time with others. Feeling needed, useful, contributing in some way. Work is out of the question because of the time required to maintain my health. So how to contribute and maintain my self-esteem while still allowing enough time to take care of myself? I know the answer lies somewhere in the lists of what is important to me and what makes me happy. Obviously, Wlson and my marriage are priorities, but after that things get a bit fuzzy. I know there will be a bit of trial and error over the next few months, hopefully with introspection I'll be able to figure out a formula that will work for me and my family. Life is full of ups and downs, this happens to be a down time (or a "valley" as S and I like to say!) but I have no doubt that after the effort of climbing the hill the view from the next peak is going to be spectacular.

Sunday, September 21, 2008

Fall Weekend

Autumn is an interesting time of year for me. There is always a sense of wrapping up: the carefree days of summer are over, school is back in session, back to schedules and responsibilities. The garden is winding down, plants are preparing to go dormant and the birds and small animals are all busy preparing for the season ahead.

Yet there is also a sense of new beginning - maybe I was Jewish in a past life? The fall schedule allows one an opportunity to get into a new routine, start new projects indoors, and for some reason I've always felt compelled to clean and organize the house at this time of year. Spring is so busy with things needing to be done out in the gardens; at this time of year the yard is pretty much on auto-pilot, allowing for my focus to shift to the inside of the house.

This fall has been no different, except that now Wilson is away at college. There is less of a schedule, his comings and goings were the bookends to my days: getting up early in the morning to do my treatments and have breakfast with him, sitting down for a cup of tea and a snack in the afternoon when he gets home from school, preparing dinner while he did his homework in the kitchen. Those markers are now gone, allowing me greater flexibility in my days but also a sense of openness and emptiness.

This year I started soon after he moved into the dorms, removing the dated border from his room, repairing the holes in the walls and painting. Sewing curtains, finally! His room looks great, tidy and organized. We've moved on to do the trim in the bathroom, our room and now are using up the paint on the 3-season porch. Funny how one project leads to another!

I'm aware that this is partially my fall behavior of working around the house, but also partly a coping mechanism to keep busy and avoid the fact that the house has a different feel to it and a different rythm now that he is gone. From time to time I do worry what will happen when I've run out of projects around the house (though to be honest, that probably won't happen for quite some time!) Eventually, I'll tire of the projects and need to spend more time on introspection, but for now I guess things are evolving just as they should. One day at a time!

Sunday, September 14, 2008

The Obama Mamas

I stole the title of this blog from Brian, Mary's husband, who texted her from his board retreat to ask how the "Obama mamas" were doing at the political rally. He's a witty one, that Brian!

Yesterday 3 girlfriends and I all piled into Mary's Vibe and headed north to Manchester, NH to hear Barack Obama speak. It was an early morning, especially considering the fact that we had been together the evening before- drinking wine, eating yummy Chinese food and making beaded goddess ornaments. After a stop at the drive-through Dunkin' Donuts for coffee and several powdered munchkins (for Chelle) we were awake, chatty and on our way.

We made it up to Manchester by 9 with Chelle navigating and Mary at the wheel, all while we were carrying on various conversations. Not an easy task! The car was parked safely in the garage and we set off to find the end of the line of people who were waiting to be screened and let into the area where Obama was to speak. It was exciting to be part of something where everyone was enthusiastic! The line stretched around 3 sides of a large city block, yet people were all cheerful, friendly and talkative, despite the heat and sun. No shoving, pushing or justling for position. There were various vendors selling $5 buttons and $10 tshirts, all promoting Obama.

We finally made it through the bag screen and metal detectors and worked out way into the crowd. We found a good place to take in the speakers: the opener was a minister who was then followed by a veteran, a campaign volunteer and then a couple other people I don't remember. (Mary and I had to take a bathroom break and the line at the porta-potties was long)

Finally Obama came out and spoke for about 35 minutes. He was a bit subdued in the beginning but then seemed to find his stride and got more energized and fired up. He did some McCain/Palin bashing as well as compared their stances on various issues. The crowd was very enthusiastic, clapping and cheering regularly. It was warm, standing in a tightly packed crowd with the sun alternating with clouds, I could feel the sweat trickling down my back, but the speach was good enough that it kept my mind off the discomfort. It was exciting to be amongst so many other like-minded people who all want the same thing: a change in our government to one that actually represents the people.

After the rally was over we walked around downtown Manchester and found a nice barbecue place to have lunch. Surprisingly, many of the restaurants were closed, appearing to be open only during the week. We were happy with our lunch choice, however, and everyone enjoyed their barbecue; we left stuffed and happy.

The ride home was just as wonderful as the rest of the day. I am so blessed to have such supportive, caring and honest friends. Its quite something to feel so comfortable with a group (especally for me- never have i been a group person!): friends who you know will be honest with you, challenge you and will give you their opinions in a loving and supportive way. I don't know what I'd do without this group of women friends.

The Obama rally was a great experience, however, the highlight of the day was truly the time with these extaordinary women.

Saturday, September 6, 2008

Cystic Fibrosis, Continued.

I've been very fortunate in that I lived a relatively normal life until I was 32. I graduated from college, had a job in Boston, got married, had a child and bought a house - all well before the age of 30! I was convinced that I was one of the lucky ones and that my attitude would carry me through life without having to deal with many health problems.

I hit the skids when I was 30 or 31, but was able to continue on working, being a mom and doing just about whatever I wanted to do, despite feeling pretty crappy. You can only ignore your health for so long before your body gives out... mine was finally fed up with being abused and I wound up in the hospital for 3 weeks and on intervenous antibiotics for 6 months. I had let myself get very, very sick. Denial is a beautiful thing!! This was a huge wakeup call. When I was discharged from the hospital my mom had to come live with us because I was unable to take care of myself and my son. This was quite a change for someone who was used to being very independent! I had to start doing airway clearance, taking IV medications every 6 hours and needed to rehab myself back to some level of physical activity. I began exercising. Eating really well. Making sure I got enough sleep. Being completely compliant with my treatments. And you know what? I actually got better. It worked! It was amazing to see that the changes I made in my lifestyle actually had a positive impact.

The social worker at the hospital convinced me that I needed to apply for disability, which I did, convinced that I would be denied. I took a 6 month leave of absence from work, knowing that I needed to give myself time to get better before I returned. I was amazed when I was approved for disability and decided (with the help of the social worker) that I would not return to work and would make my health a priority. I've never been sorry that I made that choice.

Sometimes it is hard, not working. After all, our culture is based on materialism, income, and nearly everyone else works. Its hard not having that in common with people. It can be awkward when I meet new people, when they invariably ask "what do you do for work?". I've come up with some flip answers to deflect the question, but it never really erases my uneasiness at being different.

I suppose its unrealistic to think that CF would NOT impact my life in just about every area: it does just that. Every decision has that factored in to the equation, making things that much more complex. I'm not complaining, there's no point, its my reality and I need to deal with it when things come up. Just one more speedbump in the road of life.

Thursday, September 4, 2008

Cystic Fibrosis

Heavy topic, this. I guess a little background is necessary to put things in context: Cystic fibrosis is a chronic, genetic disease that affects approximately 30,000 Americans. It is primarily found amongst those of western European descent. Although there are exceptions, most people are diagnosed at birth or shortly thereafter due to classic symptoms, such as meconium ileus (intestinal blockage) or respiratory symptoms.

Some sobering facts and figures: One in 25 people carry the gene to pass cystic fibrosis on to their offspring. Because it is autosomal recessive both parents need to have a copy of the defective gene and then there is a one in four chance that their child will have CF. According to the CFF the average lifespan of a patient with CF is 37 years and some change at this time, which is a dramatic improvement in the past 20 years. When I was diagnosed in 1984 I was told the average lifespan was 20.

My experience with CF has been far from classic. I was healthy at birth, no digestive symptoms at all and I didn't have any respiratory issues until I was about 10. Its hard to pinpoint exactly when the chronic cough started, but I really don't remember a time when I didn't cough after laughing or physical exertion. Numerous visits to the doctor didn't reveal much other than a series of diagnoses that never really seemed to fit 100%. Asthma, chronic bronchitis, chronic sinusitis, hyperthryoid and even hypochondriasis. Because I didn't fit the classic picture, CF never entered anyone's mind. I became so sick over the course of my teenage years, complete with hemoptysis (coughing up blood), weight loss and severe shortness of breath that someone finally took me seriously. I was diagnosed with some unusual bacterial infections in my lungs and from there a sweat test (the test for CF at the time) was performed. We were all completely stunned when 3 of them came back positive. Whew, a shocker to be sure, but at least we had an answer... one that made sense!!!

To be continued...

Wednesday, September 3, 2008

Coolest by the Coast

Joe and I have always been intrigued and amused by certain phrases, one of which is "cooler by the coast". Of course, living by the coast, this applies to us specifically in terms of weather but the double meaning is one we get a kick out of. We would like to think that we are "cooler" by the coast, though I'm sure our 18-year-old son would say that we are not cool. At all!

I've always thought cooler by the coast would be a great name for a band. Perhaps there is some obscure group that uses it, but I've never heard of them. Anyone who has ever heard me sing will know that there is absolutley no hope for a musical career in my future, thereby dashing any hopes that the phrase will be used as a band name. So why not a blog?

This morning on the news the weather guy said that temperatures were going to be "coolest at the coast". Hey- no fair changing the saying now! We may be cooler than those inland, but even I don't have a big enough ego to claim that we are the coolest.

Tuesday, September 2, 2008


As with most major things in my life I haven't planned anything for this blog, I assume it will just evolve as time goes by. I'm not a great one for having preconceived ideas about what I want something to be like, I enjoy the process and figure I'll know what direction I want to take it in as the process unwinds. Some of the biggest decisions I've made have come about this way, without having thought about them beforehand: when faced with a fork in the road I can decide which path to take, but before the fork is visible I don't anticipate its presence.

I think the major reason for starting this blog is that I am now at an interesting place in my life and am hoping that by writing I'll be able to clarify and work through some of the issues that I am facing. I'm 43 years old and my only child has just gone off to college. Also throw into the mix the fact that I have cystic fibrosis, which complicates just about every area of my life. I have a wonderfully supportive husband who is currently out of work and doing the job search thing. To say I'm at a crossroads would be an understatement: I'm at the end of one road and have entered a large field where there are no visible paths. Its quite an exciting and daunting time for me. Who am I? What do I want to do with the rest of my life? What is my purpose and how do I live up to my potential? I'll try to stay away from such cliched as "empty nest syndrome" and "midlife crisis", but in effect I suppose those are some of the issues I'll be exploring. Hey, its cheaper than therapy!!!