Sunday, December 28, 2008
Turns out everything went fine, I do have a great respect for chemicals and suited up with long sleeves, gloves and goggles. I went out on to the porch, where I can shut the door and keep the nosy little kittens away. I was surprised how much heat the lye and water solution produced, I had read about it, but was amazed to see the chemical reaction in real life. The water heated up within seconds to 160 degrees from a chilly 40! It cooled quickly since the porch is unheated.
I was overly anxious this morning to see how it turned out and tried to remove it from the mold. It seemed semi-solid, about the consistency of cookie dough, but apparently this is too early and the soap broke into 3 pieces. Next time I'll wait longer to remove it. Since it was so soft I was able to press it back into the mold ( a pink hospital basin!) and will wait another day or 2 before taking it out. It needs to be cut before it gets too hard but not so soft that it will break up. Another possibility for the reason of breakage could be that I didn't grease the basin well enough. It's all a learning process!
Unfortunately, I didn't get any photos of my experience since I didn't want the distraction of picture taking while I was trying the procedures for the first time. I may try another batch today and get out my camera to document the process. I'm looking forward to experimenting with different oils and fragrances but for now will concentrate on making simple, basic soaps until I know what I'm doing. I hope my friends don't mind being guinea pigs home made soaps!
Saturday, December 27, 2008
2008 was a year filled with changes: Joe leaving his job, Wilson going off to college and my own role as wife and mother being altered as a result of those two major shifts. In addition to the things over which I have no control I've also made some intentional changes in the way I live my life. I'm looking forward to continuing with those things and also incorporating some new ones for 2009.
In the past year I've started blogging. It's an interesting process, one that has surprised me. I never expected to enjoy putting down my thoughts but there are days in which I have an idea and can't wait to start my treatments so I can write about it. Of course, there are other days in which I have absolutely nothing to say and the very thought of trying to write is intimidating and depressing.
A good friend and I pledged to take 20 minutes of time per day just for ourselves this year. We both had times when we were better about it than others, but for the most part we kept it up for the entire year. It really does make a difference! Twenty minutes is such a small amount of time when you think about it and the rewards gained are wonderful. It feels great to be able to sit and read a magazine or just do nothing; so much of our time is spent thinking about others and doing things for them- it's a good reminder that we need to do things for ourselves as well. This is definitely something I will continue in 2009.
This past year I was better about bringing my own cloth bags when I go shopping. There were times I forgot them at home or even in the car, but I'd say my success rate at remembering was about 70%. I'm going to strive for 100% in 2009. When we visited Ireland I was so impressed to learn that plastic bags are illegal.
Although it was in some part unintentional, this year we stopped wasting things from food to household items. Instead of throwing things away they are fixed, recycled or repurposed. We've cut down on the amount of trash we produce and I'd like to see if we can further cut down for 2009. We started "freecycling" which is giving away things we no longer need to those who need them. I've also gotten some things we will be using from this fun group, such as a lampshade and clay pots.
In addition to cooking and baking from scratch, something I've always done, this year I started making more products that we use around the house such as laundry detergent and household cleaners. I've started using only organic castille soap for cleaning (with supplements for the hard water spots in our shower) and using vinegar for fabric softener. I'm going to continue to hang the laundry out, garden organically and compost our veggie, fruit and yard waste.
For 2009 I'd like to start making my own soap. I'm looking forward to this as I love nice, handmade soaps, which are so much better for your skin. I like knowing what is in a product I use. I'd like to improve my success rate at remembering my cloth bags when I shop with the goal of not bringing home any plastic bags in 2009. I'm hoping to be able to make most of the gifts I'll give for birthdays this year and I'm going to experiment with shopping at thrift stores instead of buying things brand new. I'm also going to set aside some time each morning either before or after I exercise to meditate. I'd like to deepen my spiritual practice in 2009.
Although this past year has been one of huge changes and I've felt unsettled more often than not I guess it's good to keep in mind that growth is painful. Change has never been easy for me, especially when I'm not in control of the changes; I'm hoping that 2009 will feel more comfortable, settled and peaceful.
Monday, December 22, 2008
This bacteria is a common cause of urinary tract infections, and can be found in the GI tract. I probably got it because of the reflux I suffer from; at night it's easy to aspirate into the lungs and not even know it. How lovely. Thankfully, there is an oral antibiotic that will treat this bacteria: Augmentin. I've had it before and know it doesn't bother me, so at least the treatment will be fairly easy. I'll start on it tonight and will hopefully be feeling better within a week.
I did a bit of googling to read about this new inhabitant of mine and was interested to find out that Proteus syndrome is what caused the Elephant man to develop his physical deformities. Thankfully I won't have to worry about that, I'm grateful for small favors. I know I may never get rid of this new bacteria but as long as I start feeling better and lose the adjective "abundant" I'll be reasonably happy. And at least I don't have to worry about becoming the Elephant Woman! I wonder what the circus life would be like?
Sunday, December 21, 2008
Saturday, December 20, 2008
The snow started falling yesterday afternoon and kept up all night. What a cozy afternoon it was with the fire going, Christmas CDs playing, hot cocoa cupped between our hands and quilts on our laps. Wilson had just arrived home after his exams which made it perfect. Joe and I made our traditional chocolate chip ginger cookies and started planning the holiday meals. Sometimes it's nice to be stuck indoors.
When we awoke this morning it was still snowing, but at a more leisurely pace and without the howling wind that was blowing last night. Joe, who is currently shoveling, estimates there are about 8 inches on the ground with 6 more expected tomorrow night. It's definitely going to be a white Christmas this year!
I haven't been feeling that well for the past couple weeks and checked in with the clinic nurse on Thursday. We'll talk again on Monday to follow up on the culture results that I dropped off and figure out a plan of action from there. Hopefully it's nothing major and some oral antibiotics will perk me up in a week or two. It's a double relief not to have the pressure of shopping for everyone this year; most of the gifts are completed and I only need to finish up the table runner for my parents and do some optional baking. I'll wrap today but thankfully it doesn't take a lot of energy.
In the meantime I can look out the windows, watch the neighbors shoveling their cars out and the kids playing and admire the beauty while feeling warm and cozy indoors. Welcome winter!
Wednesday, December 17, 2008
I crossed her path going up the hill to my house and as we started talking I felt that familiar sense of panic: I'm going to be stuck here talking to her forever. I'm not in control. I'm one of those people who hates to be rude and don't want to interrupt someone else while they are talking; however, this person eventually pushes me to it. After listening to her monologue for about 15 minutes and feeling increasingly frustrated I jumped in: "It was nice talking to you, Alice, but I have to get going now". We said our goodbyes and I felt a flood of relief. I was on my way. Maybe next time I'll only wait 10 minutes.
The chapter I'm currently reading in Awakening the Buddha Within is about stealing and I began thinking how my situation of being held conversational captive applies to theft. I can attribute my feeling of panic to the fact that I knew I was going to be held up longer than I wanted to be and that it was going to be difficult to get away. In essence, my time was being stolen because it wasn't something I wanted to give.
The most common example that comes to mind when someone mentions stealing is theft from a store or some one's home; taking a physical item that doesn't belong to you without permission. There are many more subtle types, such as taking up some one's time, using more than your share of resources, cheating on taxes, , misinforming the insurance company in order to get a better rate, not letting the store clerk know when she forgets to charge you for one item in your bag. We've all been guilty of theft of one type or another at some point.
In a perfect world we would never infringe upon anyone else's time or feel the need to claim more than our fair share of deductions on our taxes. The Buddhists say that we do these things because of our need to cling and grasp; we feel that we don't have "enough"; enough attention or money. Is one really worse than the other? I wonder if the current difficult economic times will produce more, or less of these behaviors?
Monday, December 15, 2008
Sunday, December 14, 2008
I HAVE FOUND SUCH JOY
by Grace Noll Crowell
I have found such joy in simple things;
A plain, clean room,
a nut-brown loaf of bread
A cup of milk,
a kettle as it sings,
The shelter of a roof above my head,
And in a leaf-laced square along the floor,
Where yellow sunlight glimmers through a door.
I have found such joy in things
that fill My quiet days:
a curtain's blowing grace,
A potted plant upon my window sill,
A rose, fresh-cut and placed within a vase;
A table cleared,
a lamp beside a chair,
And books I long have loved beside me there.
Oh, I have found such joys I wish I might
Tell every woman who goes seeking far
For some elusive, feverish delight,
That very close to home the great joys are:
The elemental things--
old as the race,
Yet never, through the ages, commonplace.
Thursday, December 11, 2008
Tuesday, December 9, 2008
This is a wise book which reminds me that sometimes the most basic things are forgotten. There are quite a few pearls of wisdom contained in its pages: Take a nap every day, share everything, don't hit, say you're sorry when you hurt someone and my personal favorite: warm cookies and milk are good for you. These lessons in etiquette are taught to us at a very young age and are the basics for how to take good care of ourselves and treat others. Somehow along the way, possibly because of all the other information we acquire, we sometimes forget these simple rules.
It's impossible to make it through life without ever saying or doing something that hurts someone you care about; we are all human and make mistakes. Whether we say something without thinking, do something without considering all the consequences or forget to do something as an act of omission, for one reason or another we've all been in that position. It never feels good to realize you've hurt some one's feelings.
Each person sees the world through their own unique perspective and it would be unrealistic to think that from time to time someone else's path, actions or thoughts won't be at odds with our own. The best I personally can hope for is that I never intentionally do something to hurt someone else: Malice.
Naturally, there have been and will continue to be times when I've done something to hurt someone I care about. The only solution to this, as words and actions can never be undone, is to offer a sincere apology. The power of "I'm sorry" is often underestimated.
I've noticed that often if an apology is offered, it's accompanied by a defensive attitude: excuses and rationalization. In my eyes this takes away from the sentiment. I'm not saying to appear before the person as a whipped dog, tail between your legs, begging for forgiveness. That's up to them. A simple "I'm truly sorry that I hurt you" should suffice. We have no control over whether our apology is accepted, and can never expect the other person to understand our position, just as we will probably never understand theirs.
As John Fulghum says: "nobody's perfect". If we can remember this of ourselves as well as others, we'll be a lot more realistic in our expectations. This just might be one of the most important lessons in the book.
Sunday, December 7, 2008
Thursday, December 4, 2008
It may sound silly but there are times I forget about this little fact. Not in the sense that I don't remember I have it; on the contrary, it's always with me in the back of my mind. But I do forget that the treatments and extra tasks related to the disease aren't things that everyone else has to do. I need to step back and remind myself that I'm spending roughly 4-5 hours/day doing nebs, airway clearance, exercise and cleaning of the medical equipment. No wonder I can't get as much done as I'd like to!
A fellow cystic who is awaiting transplant recently asked me what my routine was; what do I do to stay healthy? She was looking to supplement her treatments in order to stay as healthy as possible before her surgery. It was somewhat eye-opening to write down everything I do that is related to my health and staying well. I'm going to record what I wrote to her here (but in more detail) so on the days I feel frustrated that I don't have as much time as I'd like, I can look at everything I do and remember that caring for myself takes up much of my time. As J likes to remind me, it is a full time job!
My day starts like this: Get out of bed. Drink a cup of coffee (lots of cream and sugar, I wish I could say it was only for the calories... it's just how I like my coffee!). Sit down and strap into vest machine. Start nebulizer #1: Hypertonic Saline. This takes about 20 minutes. Cough, cough. Continue with the vest, alternating settings for the maximum benefit. Start neb #2: Pulmozyme, which takes 15 minutes. More coughing, but at least I get to read some blogs and answer emails while I'm nebbing and vesting. Finally, neb #3: Colistin: my least favorite of the 3. It will take about 30 minutes and needs to be mixed up by hand by using a syringe to draw up 6ml of sterile saline and injecting it into the vial of powdered Colistin. It's very foamy when mixed so it needs to sit for 20 minutes or so until the bubbles subside. Finally I can inject it into the neb cup and start smoking it. Ugh! The taste is horrible and it causes my chest to be really tight, making me feel like I'm breathing through a coffee stirrer. This lasts for the entire time I'm taking it, which fortunately is only for 28 days on and then I get a break of 28 days off.
I'm finally finished with the nebs and vesting about 1 1/2 hours after I started. Time for breakfast- no skipping meals! After breakfast comes 30 minutes on the treadmill for aerobic exercise, which is very important for keeping the lungs in good condition and clear of mucous. Then 30 minutes of strength training to help me optimize my functional ability. Having only 45% of my lung function limits what I can do and the strength training makes my muscles more efficient, thereby allowing me to do more than I normally would be able to. Then some yoga and stretches and finally off to the shower. Oh, and I can't forget that the neb cups - all three- need to be washed in hot, soapy water and then boiled for 15 minutes to sterilize them. Whew! After all this I'm ready to start my day, 3 1/2 hours after getting out of bed.
The process is repeated in the evening, except for the exercise and one of the nebs (Pulmozyme)- therefore the process is a bit quicker. I find the evening treatments more of a challenge to be compliant with. In the morning I just get up and do them - if I need to be out early, I just get up earlier to allow the time I need. The evening, however, is more tempting to skip. If we're out or getting together with friends J makes sure I plan some time to sit down and do the treatments. I'm sure without his gentle encouragement, I'd be skipping the second set of nebs quite often.
The good news is that barring any unforeseen viruses, this routine has kept me healthy for the better part of 6 years. Typically, the statistics show that on average CF patients lose 2% of their lung function per year. I've miraculously kept mine steady since 2002, so clearly the time put into keeping well does pay off.
I think people have a hard time understanding just what I do with my time; even my closest friends (unless they have spent a few days with me 24/7) are unaware what my treatment regimen consists of. I think they would be shocked to know exactly how much time goes into my self-care. On top of that, CF is somewhat of an "invisible" disease: I don't look sick and except for my cough and the need to take pills when I eat most people would never even suspect there was anything wrong with me. The up side is that CF is fairly easy to keep a secret if I don't care to share it with someone.
There are times when I lose sight of the benefit of the treatments that have become so routine for me, but there it is: they keep me healthy. There will always be the frustration of not having enough time to do the things I would like to do, regardless of whether I take care of myself or not. In the long run it's good for me to remember that my health must come first and that all the time spent on treatments is not wasted: it is time well spent.
The protagonist (I can't remember his name) believes that in order to be a be a good person, things need to be done on a large scale. He sacrifices the feelings of his own family to do what he thinks is right, trying hard to be an ideal person. It appeared to me that he failed, not because he didn't help people while performing his acts of kindness, but because he hurt is family in the process.
Typically, when we think of someone selfless, it's someone who is doing things on a large scale: travelling to impoverished countries to assist with education, joining the Peace Corps, donating large sums of money to charities, taking in as many homeless animals as their space allows. Absolutely noble acts, no doubt about it. But what about people who do things on a small scale, are their acts any less important? Do we have to renounce all material posessions and put aside the feelings of our families in order to be truly "good"?
Clearly the world is a better place because of the people who do things on large scale; we need activists and those who make these causes their life's work. Does that make the things we all do on a day-to-day basis any less important? I'd say not. Each person is capable of doing great things, many of which go unnoticed. Isn't it important to cherish your family, love and support your children, friends, parents? Share what you have without going without? Doing your part to take care of your pets, home and the environment in a responsible way? How would the world be if we each started with these small things and then expanded the circle of giving as circumstances allowed? Just something to think about.
I'll close with two of my favorite quotes from Mother Theresa: "In this life we cannot do great things, we can only do small things with great love."
"If you can't feed 100 people, then feed just one". Amen!
Wednesday, December 3, 2008
I should say that I'm not a Christian, so it's not as thought I'm one of those people who goes around saying "Jesus is the reason for the season". I prefer the more pagan meaning of the holiday, the winter solstice, shortest day of the year and warding off the long nights with plenty of lights and celebration. Peace, love for fellow man and an appreciation for the stark beauty of winter. A turning inward and concentrating on in our homes and in ourselves. All that good stuff.
That having been said, I have to confess I have a different feeling towards the holiday this year. Who would have thought? We are on an extremely tight budget since J has been out of work for the past 10 months. The economy is in the toilet and people everywhere are cutting back. The retailers and economists see this is a bad thing. But for some reason it has re-instilled the excitement and anticipation for me this year. We've made it clear to family and friends that we are not buying gifts, anything that will be given will be handmade, with a few exceptions for the children in the family.
Due to the 2 new furry additions in the house, who are getting bigger (and more destructive) every day we have decided not to tempt fate and put up our traditional live tree this year. We have an Alberta spruce that is about 2 feet tall in a planter out back which will serve as our tree- even if the kittens do climb it, which I'm sure they will, they won't be able to knock it over. The worst that can happen is a few ornaments may be pulled off and used for batting practice. Needless to say, we'll save my grandmother's good decorations for another year and only put up the sturdy, kitten-proof ones.
The idea of using a live tree that hasn't been cut makes me happy. It's much more sustainable than chopping down a tree solely for the purpose of decorating for week or two then discarding it. Plus, it doesn't cost anything. After Christmas is over this little shrub can go back outside and will continue to decorate our back garden for years to come. I'm hoping this will be the start of a new tradition and we'll use it each year from now on.
I'm making all the gifts we're giving this year, whether it be to friends or family. I should have started ages ago, but a bit of pressure is the best motivator for me. Our spare bedroom is a shambles, fabric and yarn are everywhere. But it makes me happy to be creating things with my own two hands that I'll give to the people I care about.
Some might find it ironic that it's the difficult times that are bringing back the joy of the season for me - maybe I would have enjoyed Christmas more in the past few years if I had just thought about what is truly important to me: Simplicity. It was right under my nose all the time!
Monday, December 1, 2008
Yesterday morning I received a call from my dear friend Kathy. She and her family were having a belated Thanksgiving at their house and invited W and me to celebrate with them. How could I refuse? The prospect of spending the day with good friends and eating another delicious turkey dinner was far too good to pass up. It was a lovely time, K had all the traditional dishes: squash, mashed potatoes, green bean casserole, stuffing, cranberry and, of course, turkey. We ate, laughed a lot and then ate some more. It was the perfect ending to our Thanksgiving "season" this year - spending the day with old and dear friends. I do feel truly blessed.
Now I have the pleasure of two days alone before picking Joe up at the airport Tuesday evening. It is awfully quiet around here, and I miss him, but it's also nice to have a little alone time to recharge my batteries. I don't have to worry about waking him up if I decide to get up early to make muffins for W before he goes back to school. I can clean the house and turn up my cheesy 80s music as loud as I want and not worry about bothering anyone else. I wish I was better able to explain it: there's something in me that just needs a bit of space now and again. I love being around people and I can't imagine being alone full-time, I'd never want that, but now and again I just want to be by myself. I guess it's just the way I'm wired. The next 2 days will be refreshing and I'll be extra-glad to pick J up at the airport tomorrow night.
One last thing to add to our Thanksgiving blessings list: a friend with CF received his double lung transplant on the 27th after waiting only a day! He is doing amazingly well and I couldn't be more thrilled for him and his family. That alone makes this year the most special Thanksgiving I can remember.