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Friday, August 27, 2010

I'm adjusting. Husband on the liver transplant list is becoming the new "normal", and I've talked daughter #1 into working only three days a week so she can give me a hand around the house and farm - there's too much work for one person, and if I have to pay someone, it may as well be my daughter as some local yahoo (forgive me.)

So today I spent a l-o-n-g day of serious cleaning - I totally love that mop thingee that you plug in and it emits steam!! - and I made some real progress. Even cleaned the kitchen enough to make some potato-leek soup with our own veggies.

At the end of today, I downloaded my BodyMedia armband data and entered it in the appropriate SP places - I haven't done that in a week, and it feels good to be back to paying attention. Even if I don't change my activity or diet, just entering the data keeps me aware of my goals.

I spent an hour (actually, closer to two hours) catching up with Spark Buddies' doings and team activities, and came up with a couple new ideas to jumpstart my program without making all that many changes. Sadly, I've determined that my foot just isn't ready to cooperate with the C25K quite yet, but I haven't given up that goal - just postponed it until I do a bit more healing.

I've always dealt with adversity by making A Plan - any plan, even a silly, unrealistic one, is enough to give me some comfort and change my focus. Also, I know that I feel best when I have a project that I can dig into, preferably literally - heavy physical labor, indoors or out, balances my tendency to live too much in my head. Also, that delicious tiredness at the end of the day ... even the occasional sore muscle ... there's no substitute for honest labor.

So I've make a couple plans, for myself and my weight goals, for my house, my business, my farm, my husband - you name it, I've got it laid out, and I feel much better for it. I've shaped my eyebrows and flossed my teeth. I've got my armband, my week's worth of menus, and my shopping list, and my day-planner with Time For Myself written in in ink! Yep, I'm ready to resume living my life!

  Member Comments About This Blog Post:

PENNYAN45 8/31/2010 9:07PM

    I admire the way you approach problems - honestly and head on. I am also a list maker and a planner. It is a real help to take charge of some part of our lives when we are dealing with something over which we have no control.

I am sending good thoughts and wishes your way - for you and for your husband.


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VICIOUS421 8/30/2010 4:11PM


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THE_SILVER_OWL 8/30/2010 2:12PM

    I love that you have a plan and are getting some much needed help as well...

Stay positive and strong my owl friend!!!


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LAGREBE 8/29/2010 11:32AM

    Terrific! You seem to have it all under control!

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SLIMLILA 8/29/2010 12:20AM

    I used to think I was a planner too, but for some reason my mind and body are just not cooperating with me right now. You new attitude sounds wonderful, can it be contagious? Tomorrow will be the end of my first day with no dh or around and I can't say as I've made anywhere near the progress I was expecting... and school starts on Weds..... ooooooh.......

I have focused this week on watching what I eat and taking the sleeping pills as recommended by dr., so that has shown a success on the scale if nothing else..... now, I have to focus on having a healthy lunch ready to take to school with me..... always a challenge....

Anyway, wanted to stop and say Hi and see what you're up too.. You have a lot of challenges and I hope your new attitude and family support help lower your stress levels too....

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RUSSELLORAMA 8/28/2010 11:21AM

    Great plan! You are really getting a lot done.


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LUNADRAGON 8/28/2010 10:19AM

    I admire you for your tenacity. When adversity hits, I like lists too. It is something controllable when things seem out of control. It shows you what you can and have accomplished. Keep up the great work, and my prayers are with you.
emoticon emoticon

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SUZYMOBILE 8/28/2010 9:17AM

    Love that positive attitude! You're right. I, too, have always dealt with adversity by rolling up my sleeves and throwing myself headlong into something or other! (Mind you, I'm not so sure it would be yardwork or housework--probably more mental and exercise related.)

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JANEDOE12345 8/28/2010 9:07AM

    I am picturing a runner, crouched over the starting block. Ready, set, GO!

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STARLASUE 8/28/2010 7:13AM

    emoticon emoticon

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SHERYLDS 8/28/2010 3:17AM

    I think you have a great attitude considering everything your facing. Take control of what you can so you can handle the tough stuff with a better frame of mind. I'm keeping you both in my thoughts. Hang in there

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HIPPICHICK1 8/27/2010 10:25PM

    Wow. I am amazed at what you have accomplished and your new attitude. SUPER!!!!
emoticon emoticon

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MORTICIAADDAMS 8/27/2010 10:15PM

    I love the way you think. I'm a planner too. And I crave physical activity.

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My favorite Satchel Paige quote

Thursday, August 26, 2010

Satchel Paige is one of my heroes, and I don't even like baseball.

Among his many wise (and wise-ass) remarks was, "Just keep runnin'. Don't look back. Something might be gainin' on ya."

So today, while I try to wrap my mind around what' going on in my life in general, I asked my dearest friend Katrina to do a reading for me. In part, it read:

Outcome is The Star - Set a goal and work toward it, letting nothing distract you from the outcome. Don't worry about how you're going to get from here to there. Set the goal and start walking. If you are going from Virginia to California, all you really have to know is that California is West and keep walking West. You'll get there. It's nice to know about the terrain and climate of the states in between, but really, the main idea is to just keep walking in the direction of where you know the goal lies, even if you don't know anything about the journey in between. By all means, walk. You don't have time to sit still.

So maybe I ought to get on this weight-loss-and-health-gain thing. I admit I've been doggin' it for a long damn time, paying lip service to The Cause and wearing the BodyMedia arm band and logging the data, but not really putting my heart into it (literally or figuratively.)

Tonight, honestly, it just seems like one more thing I have to put on the To Do list. But there's always tomorrow. And tomorrow is another day. (That's not Satchel, that's Scarlett O'Hara - but she had the right idea there.)

And now, before I inadvertently invoke any other quote-worthy folks, I'm calling it a day.

  Member Comments About This Blog Post:

VICIOUS421 8/30/2010 4:10PM

    emoticon emoticon

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LUNADRAGON 8/28/2010 10:20AM

    Thank you for sharing these wonderful and very positive thoughts.

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SHERYLDS 8/27/2010 12:04PM

    If I'm walking from Virginia to California, I need to keep walking West and I need a map of all the rest rooms emoticon

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JOYOUS01 8/27/2010 11:48AM

    I like Satchel Paige quotes too! emoticon

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STARLASUE 8/27/2010 6:49AM

    Baby steps. You can do it. Keep on keeping on.

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LADYJEXIE 8/26/2010 8:35PM

    "If you are going from Virginia to California, all you really have to know
is that California is West and keep walking West. "

It is really that simple isn't it.

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SUZYMOBILE 8/26/2010 8:31PM

    Katrina has a very cool website! She reads the tarot for you, yes? The Sun is a fabulous card to get, too--much better than the dang Tower. I used to do tarot and astrological readings, but had to refer to a book every time. Still, it was always eerie how appropriate the readings turned out!

I'm all for goals, too. Me, I feel a little directionless lately, with no strong goals in mind other than just maintaining and getting my legs fitter. Seems like I ought to have something more ambitious in mind, but I guess it will come when it will come.


Comment edited on: 8/26/2010 8:31:41 PM

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    I keep walking. I figure by now I should have made it at least around the world. LOL.

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General update (OT)

Wednesday, August 25, 2010

Some of my SparkFriends know a little of my backstory with my husband and his health challenges, most don't. If you're interested, here's the short version:

John was in a car accident a bunch of years ago - punctured his spleen, lost more than half his blood volume and had to have multiple transfusions. Unfortunately, he did this on the "wrong" side of town, where St. I-forget-who Hospital used to buy blood by the pint from whoever was willing to sell it - usually not the best, healthiest folks. Anyway, he got a transfusion that was tainted (at least this is the best guess we can make) and, twenty years later, was diagnosed with Hepatitis C.

Still, he stayed healthy (and meanwhile developed back problems so complicated that his Xrays are featured in a couple of textbooks now) for another decade or so. He was offered the Interferon/Ribaviron treatment, but for many reasons (mostly a very low long term success rate for his genotype, after a long and very painful treatment) did not take it. Last summer he started getting some edema in his legs, and it's been steadily downhill from there.

I'll spare you the details, but he got connected to an internationally respected doctor at Mt. Sinai in NYC. We saw him in March, and he was fairly positive - gave John a different main diagnosis (cirrhosis, yes, but caused largely by Non-Alcoholic Fatty Liver Disease, rather than Hepatitis C - which he still has, of course), a different treatment protocol, and a different - positive - prognosis.

John's been having more and more problems, largely with the edema in the legs and ascites (fluid build-up in the abdomen), but also some hepatic encephalopathy (cognitive problems due to liver disease) and feeeling worse and worse. It's slow, but progressive. So we went back to NYC and saw the doctor again. This time he looked at him, prodded a little and suggested he be evaluated for a liver transplant immediately (in Rochester, though - closer to home and with a better chance of finding a donor.)

So that's where we are now. I haven't given up - not by a long shot - on either my husband or myself, but I may not be around much, and if I am, it may be sort of hit-and-miss. I have a huge amount of house and farm stuff to deal with (especially with hay to get in and winter to prepare for) and now have to be especially supportive of my husband, and ready to do whatever he needs done. A positive side of having to take better care of his needs is that his diet is moderately high protein (100 gms/day), lower carb (and only "quality" carbs) with little sugar and just about no salt - exactly what I need to lose weight.

I'm willing to shelve most of my artistic pursuits for the time being, like writing my book(s) but I can't devote myself 100% to the care of someone else. I almost wish I could, but I'm just not made that way. I need some alone time to read or walk or draw or just sit. Doing morning, noon and night for someone else will make me crazy, and then I can't help either of us. So Im trying to find that balance. And to manage ... eh, difficult to explain, but I get so upset with him sometimes, so angry, but then I realize how ill he is, and feel so terribly guilty and sad, and that doesn't help either.

I'm so very tired of tightropes and eggshells, but that seems to be what's underfoot at the moment. Wish me luck, kids.

  Member Comments About This Blog Post:

VICIOUS421 8/30/2010 4:09PM

    emoticon I understand what you are saying.
Much luck & emoticon

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THE_SILVER_OWL 8/30/2010 2:03PM

    Someone wisely told me recently that it is harder on the person doing the care giving than on the patient going through the "disease".

The caregivers are sometimes over whelmed with more than they can handle, feel helpless to actually "help" the person when they are in crisis, and are often not given as much support by others as the patient is.

Please know that you are appreciated and doing a job that is beyond invaluable. May your days be easier, your burden lightened and may you get the love and support you need along this journey.

Prayers going out for you and John...


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LUNADRAGON 8/28/2010 10:26AM

    Karen, my prayers are definitely with you, and for your husband to receive the treatment he needs.
As for you, you are inspiring. Keep it up. I have been where you are with a very sick husband, and it is not easy. Keep up taking care of you because that is critical and crucial.
It is ok to pencil in a little creative down time. It really is essential to have some "me" time. These blogs are fabulous ways to be practice writing. I consider this type of writing "Sketching" akin to pencil sketching for paintings, etc.

Remember: When you fly on a plane, you are always instructed to get oxygen for yourself before you help someone else.

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STARLASUE 8/27/2010 6:56AM

    Karen, do remember to care for yourself during these difficult times. Your writing is an important creative outlet for you that can cleanse and harmonize your system. Honor that and give yourself permission to carve time out for it.

The only way to have enough energy to be a caregiver for someone else is to practice good self-care.

Sending you & hubby healing energy and praying all will work out for your highest good.

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SUZYMOBILE 8/26/2010 1:53PM

    Karen, I've been thinking about your blog ever since I read it. What shone out of it was total honesty about your feelings--with yourself and with us. Maybe your husband isn't the best of patients either, which doesn't help. Still, you should strive NOT to feel guilty for wanting a little time for your own pursuits. You have to take care of yourself, or you'll be no good to him when you need to be. Can you get someone in to help with the caregiving, or would he resist that idea?

I'm not a big pray-er, but know that I'm thinking of you and sending good vibes your way for a liver to become available soon.

Meanwhile, be strong, SparkFriend, and lean on all of us as much as you need to!

emoticon emoticon

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BORNAGAINBRAT 8/26/2010 1:51PM

    Maybe saint was not the right word. She did have a meltdown or two. Hospice is amazing!

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BORNAGAINBRAT 8/26/2010 12:41PM

    We just lost my dad after 15 years of pain and doctors. My mother is a saint but she still had hospice come in and help and of course I helped as best I could. I can only imagine what you and my mother are/have gone through. One day at a time, sometimes one hour at a time. My prayers are with you and your husband. May that liver come soon. God bless.

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TIME2FINDMYSELF 8/26/2010 12:23PM

    When those frustrated feelings hit, just remember that your husband is probably just as frustrated to ask you for so much and not to be able to do the things he used to. When my Dad got sick (pancreatic cancer), he spiralled quickly into a place where he needed help to do the simplest things, and he hated to ask anyone. It would be good for both of you to talk about it. I am sure you'll see that you have similar views on the stress of the situation. emoticon

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JRSWHIMSY 8/26/2010 11:52AM

    My late stepmother spent a lot of time on the donor list (double-lung transplant, much trickier) so I can imagine some of what you're going through. I also understand you not being able to devote yourself wholly to someone else, and I hope your husband does too. Be sure to find that important time for yourself. Care giving is such a difficult thing and can be such a strain and drain. You have many people behind you, many have gone through this before, and you are not alone. *hugs*

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HIPPICHICK1 8/26/2010 10:02AM

    I didn't know the back story, so thanks for that.

It sounds like you need to call in someone to help out. I'm not "nurse" material either so completely understand your need to have alone time and to do things for yourself.

I once read this article about Christopher Reeve and his wife Dana who tried to be his nurse, but his condition was such that she was simply unable to be that nurse and was told she never should have even entertained the thought, but she was advised to hire a professional to care for Christopher. I would suggest that you do the same.

I'm praying for a way for this to happen for you as not everyone can afford to hire a medical professional to care for one in need.


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MORTICIAADDAMS 8/25/2010 10:56PM

    What you are feeling is normal when you end up as a care giver to someone so ill. You NEED time to yourself. I am praying for you and your husband to have a good outcome to this ordeal. I am around if you need me. Take care of yourself as well as hubby.

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There, but for the grace of God, go I. (OT)

Saturday, August 21, 2010

About two weeks ago, I was driving my daughter to a bead store about thirty miles from home (nearly everything is at least thirty miles from home.) On a set of S curves around the lake, two lanes each way separated only by yellow lines and with a 55 mph limit, a car going the other way cut off another. The one swerved and missed the other, but I realized in a split second that if the cars clipped one another and one spun out, with the trajectory of that curve it would hit us head-on, and that would be it for us. That didn't happen, of course, but I was seriously shaken. I tried to tell my daughter about the close call we'd just had, but she wasn't looking at the time and didn't have my perspective - and at 22, she probably still feels immortal.

I spent the next couple days feeling, as my grandmother would say, like a goose had walked over my grave.

This morning's front page has a picture of that same stretch of parkway. Apparently there were two accidents there last week, and one was a fatality - one car clipped another, causing the first to slide into opposing traffic and take out a car going the other way - exactly what could have happened to my daughter and me. Now, of course, there's another debate about putting up a median, but everyone knows it won't happen.

The point here isn't about driving, or even near misses. It's about, well, what would have followed had I not been quite so lucky that day. A whole cascade of bad things, from dirty dishes left in the sink to sick husbands with no one to care for them. Obviously, there's not a whole lot I can do about the husband, other than maybe finding extended care insurance, but there are a myriad things that I can take care of. Does anyone else in the family know the location of the safe deposit box key? What's in that safe deposit box, for that matter, and where are the other policies? Can anyone else identify all the people in those old photographs? How about the family histories of all those two hundred year old things? How were we related? Where are the relatives all buried? (And how about the good stuff, like the skeletons in the various relatives' closets?) I'm willing to bet I'm the only one who knows most of those answers.

So while I'm decluttering and cleaning up in general, sorting through the boxes and boxes of my mother's belongings, her attic, my attic, all that nonsense, I'm taking a few extra minutes to make some notes. I don't want to leave all this Stuff for someone else to deal with, but I also don't want to leave a bunch of mysteries. I went through a bunch of paintings and photographs the other day, identifying the people, the settings and the circumstances as far as I know them. I intend to do this with anything I come across that has a history I know about. I spent a couple hours on the computer and wrote down all the family history and genealogy I could come up with. If I think of more, I'll add it.

I fully intend to live another forty years, hale and hearty to the last. But just in case - in case I do get run over by that bus or get struck by lightning - I'm vowing to take care of some of these details. It would be a shame if it got lost, and it will if I don't do this.

But I'll tell you one thing: I'm going to be taking a different route to the bead store from now on.

  Member Comments About This Blog Post:

FLORIDASUN 8/26/2010 1:05PM is SO precious and SO fragile. I remember all the close calls that our Josher had...a collapsed lung and WAY too big at birth he almost didn't make it into the world to begin with. Then the car accident when he was only 9 months old and we almost lost him again. Then the 24 hour nurse that was on duty in our home while I and DH were working to keep our insurance alive who left him unattended with a rectal thermometer that impaled him when he rolled off the changing table...ALL of this and he was only 9 months old. We thought he was a cat with 9 lives and hovered and protected him like a protective eagle would her nest. Then...lost him in spite of ALL of that when he was just 3 weeks from his 23rd birthday~ ~ Fate is fickle! Love the one's you love with all your might, and all your soul and leave nothing for granted...there truly are no guarantees beyond the moment in which you are living! emoticon

As for the special stories and the memories that you have to share..get them out there for prosperity's sake..your family will love you for that!

And yes, yes, yes...please find another route to that bead store...obviously the universe is telling you the prior one isn't safe!

I'm SO thankful that it wasn't your time during that scare...and I'm so thankful that you realize the lesson's that it taught you. emoticon

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EUPHRATES 8/26/2010 11:13AM

    My mate and I are putting things in place because I worry what would happen if I became incapacitated - how would he access the money I'd get for disability? How would he get disability going anyway, since we're not (nor do we intend to be) legally married? My mom had her stroke at the age of 44 - I've beat the record already (I figure I win), but's something I think about, maybe more than most people 'cause I lived with the fall out as a kid.

Glad it was just a close call!

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HIPPICHICK1 8/26/2010 10:12AM

    While on vacation I got to see my Great Aunt Nelly who is 95 years old now. She put to rest the rumour that there is Gypsy blood on my father's side of the family. Apparently there is none, but then I found out that there IS gypsy blood on the OTHER side - my mom's! Irish Gypsy! I'm part Pikey!! LOL! Family history is indeed important and mostly super interesting!
Glad to hear that you are going to find a new route to the bead store!!

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PENNYAN45 8/21/2010 11:42PM

    I had a close call one day on the road - and realized that I was seconds away from having been killed in a terrible accident.
I remember going home and telling my husband about it - and then asking him what he would have done if I had died that morning. We spent the next few days on and off discussing what either one of us would have done if the other had died suddenly that day. It lead to some interesting talk.

It is such a narrow thread between what could have been and what is.

We should take nothing for granted.

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ANDYLIN90 8/21/2010 6:59PM

    I'm sorry you had a scary incident, but you certainly have taken positive steps since. My Mom is 84 and I'm very lucky she is in good health. As I look forward to retirement in the next several months, spending time with her sorting, discarding, writing, listening, saving is something I'm very much looking forward to doing. Thanks for posting.

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STARLASUE 8/21/2010 6:18PM

    I am glad that you and the other drivers were being watched over that day. Things like that certainly do get us to thinking. It is a good reminder to make time to do those little things we know are important and that we really want to do.

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JANEDOE12345 8/21/2010 5:59PM

    I think it was Don Juan in one of Carlos Casteneda's books who advised us to think of death as a little brother always watching over our shoulder. Not a bad thought, just a reminder something like that curve in the road, kind of like our mom's warning about that fated bus that seems to have stalked all of us all our lives.

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    This is a great idea and I need to do it too!!

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UUCEEJAY 8/21/2010 5:04PM

    I certainly understand the need for me to do this, but I don't have the energy to deal with it. I have been trying to get myself motivated to work on it all summer but have made no progress. Maybe reading about your scare will be added motivation for me.

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SUZYMOBILE 8/21/2010 4:14PM

    My parents left behind a number of secrets and mysteries, one of whom called me out of the blue one day. So, you're doing the right thing!

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1THING 8/21/2010 3:55PM

    you were blessed! might be helpful to you meanwhile. emoticon Be blessed!

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Thursday, August 12, 2010

I was all the way down to S before I realized it was in alphabetical order. This could be interesting...

A - Available or married? Married. So very married.

B - Books? Yes - enough to open my own branch of the library. Currently, a couple paperback cozy mysteries, a book on welding techniques for artists, a book on Woody Landscape Plants, and Chi Running. Also the usual armload of magazines.

C - Cake or pie? Pie. But not cream pie.

D - Drink of choice? Gin. Failing that, water, no ice.

E - Essential item? Duct tape.

F - Favorite color? For what?

G - Game to play or watch? Backgammon. Preferably for money.

H - Hometown? Philadelphia.

I - Indulgence? Jacuzzi.

J - Job? No, thank you. I've already had more than my share.

K - Kids and names? Annie and Alexandra.

L - Life is incomplete without? A sketch book and a dictionary.

M - Music group or singer? At the moment, Etta James.

N - Number of siblings? Zero by birth, but many recognized along the way.

O - Oranges or apples? Apples.

P - Phobias/fears? Spiders and polar bears.

Q - Favorite quote? Every normal man must be tempted, at times, to spit on his hands, hoist the black flag, and begin slitting throats.
H. L. Mencken

R - Reason to smile? I'm still here.

S - Season? Whichever one we're currently in.

T - Tattoos? Yep, a Celtic on my left calf.

U - Unknown fact about me? I have an excellent sense of direction outdoors, but indoors - even in a largish house - I get hopelessly lost.

V - Vegetable you love? Anything but okra, and even that is okay if it isn't cooked to the glue stage.

W - Worst habit? I tend to wander off.

X - X-rays you've had? Feet, hands, wrists, teeth, knee, lungs, left side of head, sinuses, spine ... God, you name it, I've got a picture of it around here somewhere.

Y - Your favorite food? Tiny new potatoes with sour cream and caviar. Anything with fresh basil. Callard and Bowser toffee. Espresso with real whipped cream. My mother's pot roast.

Z - Zodiac? Pisces, Scorpio on the ascendant, moon in Capricorn. Grand trine in water signs.

  Member Comments About This Blog Post:

UUCEEJAY 8/17/2010 10:02PM

    I like your quote! LOL

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FLORIDASUN 8/16/2010 11:51AM

    Now I know why I LOVE you so much...are we sister's of a different mother...I'm sure it's so! Love your books...we could start our own branch library I'm sure...ditto on the mags! Essential Item...too funny...wish I would have thought of that one...houses have been buildt with duct tape! emoticonLove life's essentials...yes on the sketchbook...can you believe I actually drug home dictionaries and encyclopedias from the grade school library...I mean 5 miles I hauled those babies! Love Etta James...yes on the only lonely...but good at adopting family! LOVE Pisces...married one! And...did you know they say your physical self is your SUN sign but your TRUE personality self is your MOON sign...Cappy says it all! and if I do say so myself thats a GOOD thing. My moon sign is Pisces by the coincidence there either! emoticon

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STARLASUE 8/13/2010 4:37PM

    We have several things in common but I never doubted we did. LOL Thanks for sharing this.

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    Love the favorite quote. LOL.

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SUZYMOBILE 8/12/2010 10:17PM

    Love it! "I tend to wander off." "Etta James." Jesus! You are fascinating and should blog more!

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1NIMUE 8/12/2010 9:56PM

    Very interesting!

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