Testing Positive

I've always wondered about steroids and cystic fibrosis and now I'm wondering no more. I'm on my first course of Prednisone for PFTs that were an all-time new low for me. It was pretty weird to see the FEV1 results as I did the tests, they started out horrible, sure, but as a rule they improve with a couple more tries. Not this time, they didn't budge.

I knew I wasn't feeling great, although I wouldn't say I was feeling "sick". This is my least favorite time of year - hot, hazy and humid weather with lousy air quality. Yes, we have air conditi0ners, but they don't purify the air so although it is cooler, the quality is still sub-par. The poor air quality really affects me and I have a much more difficult time breathing, my energy is low and just generally feel crappy. I've been a slacker with the exercise which in turn creates a vicious cycle. I got a lecture from the PT to start up again, which I'll be doing today. Hopefully the 'roids will give me the jump-start I need along with some cooler, drier weather which will be coming in on Thursday. I don't like to wish the summer away, but is it autumn yet?

Diamond in the Rough

This morning Joe and I went on a yard sale-ing excursion with some friends who are veterans. In the past we've occasionally stopped in at a yard sale if we happen to be passing by, but have never made an effort to seek them out. Our friends checked the paper and plotted our route. These people don't mess around!

At one place I saw this sweet little painted table. It had quite a few dings in it but the owner - who said it was an "antique, from the 60's" -only wanted $3 for it so I couldn't resist. A fresh coat of paint on it and it would look good as new.

But wait a sec.... I wonder what's under all that paint? Curiosity got the better of me and I had to see the wood. Beneath the 2 coats of stubborn white paint was a mustard yellow layer with black curlicues and flowers. It had probably been pretty at one time, but the color reminded me of the 70's and all my scraping didn't do it any favors, either. The wood, once I was able to see a patch, appears to be walnut or cherry, absolutely lovely. It would be a shame to cover it with another coat of paint. This baby needs to be stripped!

I'm glad I got a "before" photo because this is going to take a lot of work and I want to be able to remind myself how it looked once it's all finished. Being the tree-hugger I am, I won't use any chemical strippers to remove the paint and will do it all with elbow grease. I'm going to be scraping for quite some time!

Barney

For the past 10 days we've had a purple finch visiting our thistle feeder. He's been easy to identify because he has a feather on his little head that is broken and sticking out at an odd angle. Joe was able to get quite close to him and discovered that he must have sustained an injury - either an animal caught him and he was lucky enough to escape, or perhaps he flew into a window.

He spent a lot of time on our feeder at first, the first day we noticed him he was there all afternoon, sleeping on and off, eating a few seeds and then just resting.

I was worried about him but knew there wasn't much I could do other than let nature take its course. I didn't know what we'd find when we came home from Maine, would he gone? Recovered and moved on, or succumbed to his injuries? I resigned myself to the not knowing but was very pleasantly surprised to see him still visiting our feeder and spending quite a bit of time there. I see it as a good sign that he's eating, I imagine if he was in very dire condition he'd just hole up somewhere and stop eating.

It seemed appropriate to give him a name since he's been around so much, I didn't feel right just calling him "that purple finch" or "our birdie". Barney seemed appropriate since he's purple.... after all, when Wilson was 4 he named Joe's Saturn Barney because it was plum-colored. Feel better soon, Barney!

Hey, It's Good

To be back home again.

After a wonderfully relaxing few days in Maine with my parents and brother we are back home again. Each year around my mom's birthday we all gather, it's become a fun tradition.

The cabin is very rustic, with 2 outhouses -though there is indoor plumbing and electricity now. No TV. No internet. No neighbors. Life slows down and we all take the time to read, talk and relax without the interference of the outside world. Meals are a bit slower because there's nowhere to rush off to afterwords.

Picking blueberries from the surrounding fields is a favorite activity, as well as baking blueberry muffins, pies and pancakes. The crop varies from year to year - last year was very sparse as the fields had been mowed, and this year was only slightly better. Hopefully next year we'll have a bumper crop and I'll be able to make some blueberry jam.

Occasionally, if we're awake early enough, we'll be lucky and see a deer or possibly a moose. This year I saw a female deer at the edge of the field, but by the time I had gone inside to get the camera she was gone.

The night sky is especially beautiful and on a clear night the stars are so bright. No light pollution here.

As relaxing and restful as it is at the cabin, it's always good to return home to Gomer, Gracie and Millie, our little house, gardens and neighborhood. Nothing like some time away to make us appreciate what we have and take for granted every day.

Ebb and Flow

I suppose anyone who pursues a creative endeavor will experience times that are more fruitful than others. While I was learning to quilt I noticed there were periods when the desire was there but I just didn't have any ideas. I found this incredibly frustrating but soon learned that everyone goes through these dry spells. You can't force it, no matter how much you want to, and you just have to be patient and wait for your mojo to return. (On a side note, I have tried to force it and learned that it is just a waste of time and energy).

My quilting drive seemed to have been replaced by a soap-making drive; I haven't quilted in months. Lately I was feeling a bit of the 'itch' and I've been rearranging my fabric closet and tidying up the room. This sort of nesting behavior usually precedes some project or other. Sure enough- I got out my machine the other day and several ideas immediately popped into my head.

I made a padded sleeve to protect my laptop when traveling, and I made one for Joe as well. I'm anxious to start a baby quilt for one of my students, who is expecting her fourth baby in January. I have a feeling it's a girl so will make a girl-baby quilt, but may have to make a backup blue one just in case my intuition is wrong. The drought is over- hallelujah!

We're Pretty Lucky

Every Thursday evening in July and August there are free concerts at Red Rock Park in Lynn, which is within walking distance from our house. In previous years we've taken advantage once, or maybe twice, but this summer we've made it a habit to grab some takeout or bring a light meal, a blanket and listen to whichever band is performing. Even if the music isn't our style it's great to sit outdoors on a warm night, overlooking the ocean, watching people and listening to a live band.

By attending every week we've come to recognize other regulars: the crazy woman who dances all alone in front of the band, the older group that appears to be doing aerobics, and the kids who run around and play in the grass. It's all part of the fun.

Last week as we were munching on Mexican takeout, listening to the band and watching the sailboats in the harbor our friend Brian said, "we're pretty lucky to live here". Indeed we are, and it's good to be reminded.

A Link and Garden Photos

There are several blogs I read on a regular basis that spark my creativity, one of which is Park City Girl - the blog of a very talented quilter. I am

always inspired to see her work. She has created a pattern for an adorable bag, which she is selling in her shop. Click here to see her blog and the bag.

The above photos are from 7/31/09, just prior to a heavy downpour. It had rained most of the morning, then cleared a bit, only to rain again. I'd guess we got about an inch of rain, all told. The happy flowers have enjoyed all the moisture, but the drippy, wet tomato refuses to get much bigger, much less turn even the slightest shade of yellow. At this rate we'll be eating fried green tomatoes this fall!

Time to Lighten Up

There must be something to do with either the alignment of the stars, the super-humid weather or a mid-summer slump. Everyone seems to be tense, on edge, and tempers are quick to flare. Instead of dwelling on this and trying to figure it out, I thought I'd ignore the issue completely and post about bamboo.

I found a great yarn that is 100% bamboo - who would have thought? I always imagined anything made from bamboo would be prickly, like wood-- but this fiber is truly amazing. It's soft and silky with a beautiful drape. I bought several skeins on closeout from a website and made a lacy wrap to wear with my plum spaghetti-strap dress, then I made this scarf. The pattern is one I found online, it looks more complex than it is, and I like the openness of the weave. I have several other colors: pink, tan and green, which I'm looking forward to working with. Christmas is only 4 months away and I need to get started!

Quality vs. Quantity

It takes all types to make the world go 'round, and how boring would life be if we all had the same views? Those were two of my dad's mother's favorite sayings. She was an incredibly open-minded woman, especially considering her age. And she's right - the world would be a very boring place if we all thought and did the same things. At the end of the day we each have to be able to live with our decisions and sleep well knowing we carried out our day according to our values, and not someone else's.

Probably one of the best places to meet those with differing opinions and backgrounds is the internet- an online forum I read and sometimes participate in is a prime example. We are all bound by a common theme: cystic fibrosis. Either we are a patient, a parent or someone who cares about a cystic. And though we all have this common denominator, everyone brings their own unique set of values and personal views to the table, which makes things very interesting.

There's one member who recently posted a situation in which he is planning to be taking a trip to England in October. His first time there, probably his first out of the country and perhaps even his first out of FL. He'll be staying with relatives, one of whom now has the swine flu. He's seriously thinking of canceling the trip because of this. Although his FEV1 (the test used to measure lung damage) is a whopping 106% - that of a "normal" person - he'd prefer not to expose himself to any danger and potential damage to his lungs.

Other members weigh in on his posting, some saying they would definitely not go, some would go regardless and others say wait a bit and see what the situation is like closer to the departure date. This is the beauty of a public forum - the variety of responses.

Although I have no right to be offended at his post I do find my hackles a bit raised at his flaunting of his perfect FEV1. There are so many people on the forum who are living with less than half of that, who are awaiting transplant (or who have decided to forgo the surgery and let go) that it seems in poor taste to be unduly worried about losing a few points from a score of 106%. Ah, I'm digressing a bit from my original point.....

............. which is quality vs. quantity. We are all entitled to our views, our concerns, and opinions and choices. When all is said and done we are accountable to only ourselves. When I was struggling with the decision to stop work and apply for disability one of the best pieces of advice I received was from a former doctor who said "I've never heard anyone say on their deathbed, 'gee, I wish I had worked more' ". That has stuck with me and one of the ways I weigh my decisions is by thinking about that scenario, morbid as it may sound: on my deathbed, when I look back at my life, will I be happy with what I did and what I avoided?

Save one or two exceptions I wouldn't change a thing. I travel, own a home, raised a family, have pets and pursue activities I enjoy, all of which make my life worth living. Most likely there are people who would raise eyebrows at some things. Gardening? Gasp! There are microorganisms that live in the soil and compost! Travel? Airports, viruses. Pets? Dander, germs. With anything there is risk as well as benefit. It is up to each of us to apply our own values to situations and come up with decisions that will make us comfortable. Fun balanced with caution.

Would I go to England, despite there being swine flu now? You bet. I'd take precautions, wash my hands like someone with OCD and enjoy myself. If there was an active case in the house at the time of my trip I'd stay somewhere else or possibly cancel, no sense in taking undue risk, but I prefer not to wrap myself in cotton wool. Has this shaved a few years off my life? Who knows? Maybe, maybe not. What I do know is that I enjoy my life and doing the things that make me happy and if that is the case, then I consider it a life well lived, regardless of the length.

Staying Put

Prior to and during my consultation at Children's hospital I was quite sure I was going to make the switch back. I liked the doctor, she seemed to listen to and understand everything I was saying and what I was looking for in a center, and a doctor. The staff was all attentive, the clinic clean. I spoke to the research nurse who listed several studies they are doing that I would be eligible for. It all seemed good.

Yet as I left, for all the familiarity, I still had an unsettled feeling. Nothing I could put my finger on, but something in my gut that didn't quite sit right. I decided not to make a decision until I felt strongly one way or the other, I'd sit with the feeling and see where it led me.

The more I thought about it the more I felt that the pediatric setting wasn't right for me. The care would be good, no doubt. But there is a different philosophy and attitude at MGH and, for me, it feels more comfortable. The one comment I kept going back to that the doc at Children's had made was that they didn't emphasize exercise there as part of the treatment plan because it wasn't really necessary with children. They're naturally more active than adults. (Though, as an aside, I'm not convinced of the truth of that statement in this day and age of X Box and Nintendo) Regardless of the validity, if they are treating adults, I don't think they can apply the same rules as they do for kids.

The comment in itself wasn't a big deal. And in all honesty, I don't need a doctor or PT to tell me I should be exercising and to devise a plan for me. I already have my routine and it works well, so that part doesn't really make any difference. I think it was the attitude that they didn't do something because it didn't apply to children - which brought me back to the main reason I left in the first place - the fact that they didn't want to let go of their adult patients, but they aren't able to completely shift their approach to that of adult care.

I didn't spend much time agonizing over the decision this time. I was able to trust that eventually I'd know what was going to be right for me, one way or the other. I feel very comfortable with my decision, and also know that nothing is set in stone; just because the time isn't right at this moment, doesn't mean that it won't come up again in a few years. All I know is that for now, MGH is the place for me.

Old Dogs, New Tricks

You're never too old to learn something new, but learning and acceptance go hand in hand. I recently heard the term "intersex" and couldn't help but ask: what does that mean? If I had thought about it for a moment I probably would have figured it out for myself but the answer came before I had time to dissect the word. It's a term used for people who are neither male or female, and don't identify themselves with a label of either. A more familiar term would be hermaphrodite, though this is considered to be somewhat derogatory by the intersex community.

Several years back I read a fascinating book - As Nature Made Him- which was a nonfiction account of a twin who was severely injured during a routine circumcision back into the 1960s. Due to the nature of the injury his doctors felt it would be best to "reassign" him as a female, since he would never have normal male genitalia. He was not told of the accident and raised as a girl, despite his having strong urges to be a rough-and-tumble boy. Sadly, he ended up committing suicide as an adult due to the severe gender confusion he suffered as a result of his reassignment.

Learning about intersex people reminded me of this story and how our genders are not necessarily what our bodies dictate. People have an innate sense of gender: male or female, that doesn't necessarily coincide with what their bodies are. Frequently, intersex babies are assigned a gender, on the basis of a decision by their doctor. I'm no mathematician, but I'd guess there is a 50/5o chance of getting it right (or wrong).

There is a tendency in any society to shun a minority, or something that is different, and there is certainly plenty of opportunity for misunderstanding in this case. Our UU church promotes acceptance of all people: GLBT -and- I (intersex) should be added to this list. It is good for me to be reminded that it's never wrong to ask respectful questions and learn something new - everyone wants to be acknowledged and accepted for who they are regardless of race, sex, religion or gender identity. I'm grateful to those in the intersex community who are willing to explain their situation honestly and openly in order to provide better understanding of their situation.

The Cat's out of the Bag......

..... but in this photo she's in the bag that's hanging on the door handle. Leave it to Gracie to find her way in. She loved it and rolled around inside for quite a few minutes, trying to get her tail and then swatting at the camera once I started photographing her. She's 10 months old in this photo and just about fully grown. Never a dull moment with her and Millie around!

Quote of the Day

If money is your hope for independence you will never have it. The only real security that a man will have in this world is a reserve of knowledge, experience, and ability. -Henry Ford

I stumbled across this saying in someone else's blog and loved it; it gets to the core of my belief system. We have become so accustomed to buying convenience, whether it be in terms of what we clean our homes with, what we eat, wear, and the items we use daily, that nobody thinks of doing these things themselves. In fact, if I had a dime for each person who said "why are you making soap? you can buy it cheaply at the store!" I'd be able to retire.

Of course it can be purchased cheaply at the store; that's not the point. I like the fact that it's not purchased and that I made it with my own 2 hands. I like the independence and feeling of self-sufficiency as well as the creative process - being able to control what ingredients are in it, the color (or lack of), the scent and shape.

We can pay someone to do just about anything around the house, from cleaning it to taking care of the yard, repairs and even shopping and cooking. Life becomes less stressful, allowing us more time to work. But what's wrong with this picture? When did making money to pay someone else to do things for us become the goal?

This may just be my way of rationalizing our way of life because I'm unable to work, but I'd like to think that even if I was in perfectly good health I'd be following this path. There will always be things either Joe or I are unable to do: electrical, plumbing and major home repairs. But a small garden to grow some fresh summer veggies, making our own cleaning supplies, hanging out the laundry and tackling small projects around the house are all within our grasp. Sometimes we may need to do a bit of research online to figure out how to do something, but once we have learned a new skill and completed a task we are rewarded with a feeling of Independence and accomplishment that paying someone to do it can never provide.

I'm In!

I found out that I had been approved by the jury to participate in the vendor's section of the Salem Jazz and Soul Festival in a rather anti-climactic way. I had expected an official looking letter, or possibly email, to let me know; instead, I received a brief email from the contact person stating "I still need your CORI check form".

I called her to inform her I was waiting for approval before sending it in, as it cost an additional $25 to process. Not that I'm cheap, mind you, but on top of the booth fee I had already sent it it added up and I figured if I wasn't going to be approved, why bother?

"Oh, you're accepted as a vendor" was the very casual reply.

I am? Wow! Thanks for letting me know! (Tiny bit of sarcasm here)

I have a jumble of emotions which run the gamut from excitement to anxiety, all of which I know are normal. Thankfully, I've been making larger batches of soap for the past couple weeks in the hopes that I would be accepted so I should be fairly well stocked. I have no idea what to expect but hope I'll have an appropriate amount of soap- not too much but enough that I won't run out.

Having been preparing for this fair has been a fair amount of work already and it makes me think that I don't have the energy to run a business. It IS fun planning and creating, and I love the idea of being able to put my passion into something that actually makes money, but I find myself tired and I've been having trouble keeping up with the rest of my life, such as cooking, cleaning and looking after myself. Since the soap will need to cure for 4-5 weeks I'll wind up the process by the end of this week and will have more down time. I'll enjoy the experience of the fair in August and then evaluate whether to consider going ahead with a business or not. This is, of course, assuming that I even sell anything!

Lockdown

We just finished watching a movie called The Diving Bell and the Butterfly, which was quite a thought-provoking film. Joe must have put it on our Netflix list and when I heard what the storyline was I said "no way do I want to watch that, way too depressing". It's the story of a French man, the editor of Elle magazine who suffers a massive stroke at the height of his career when he is 41. He is completely paralyzed but for one eye and he is unable to move at all except to blink. He was perfectly capable of hearing, understanding and thinking, but was unable to speak or express himself, which is called "locked in syndrome" for obvious reasons. I can't even imagine the frustration.

The movie is filmed in French with subtitles and when Joe watched it a couple weeks ago I passed through the living room a few times and found myself pausing to read a bit of what was going on. It didn't seem as depressing as I had originally thought. Ok, maybe I'll give this flick a try.

Today we sat down to watch it, Joe for the second time. It was an intense film, shot from the point of view of the main character, Jean-Do, the man who was paralyzed. It gave the viewer a glimpse of what it must have been like to see only through one eye and not be able to control what comes into your line of vision. The viewers are privy to the inner thoughts of the protagonist, which the other characters in the film are not, which helps give more context to the story. It is beautifully and artistically filmed.

With the help of his speech therapist, he is able to "spell" out words by having her list the letters of the alphabet; he blinks his eye when she comes to the letter he wants to select. In this way he is able to laboriously spell out words, sentences and his thoughts. He eventually writes an entire book, on which the movie is based. Unfortunately, he died of pneumonia a matter of days after his book was published.

Although the story was horribly sad I found it inspiring that this man was able to live and stay sane inside his immobile body. He had 2 things which could not be taken from him: his memories and his imagination, both of which were portrayed beautifully in the movie. It demonstrated the amazing tenacity of the human spirit in the face of unbelievable adversity.

On days when I feel discouraged by some minor inconvenience or circumstance, I will try to remember this story. We do have a choice: we can give in to suffering and lose our will or we can make the most of what we have and try to rise above. If this man, who had so little left, was able to maintain his outlook and produce a critically-acclaimed book I should be able to maintain a positive attitude despite the circumstances as well. Something to strive towards!