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barefut impressions


All out of Spoons - and knives and forks...

Posted by barefut , 01 March 2008 · 1,011 views

Saturday - I had big plans for the day but I used up all my spoons taking a shower and getting dressed. My boys are using up my knives and forks as I type, fighting with each other and the dog whines at the back door, starved for attention.

I don't suppose I 'll get anything done on my list today and they are things that have to be done - or else...Oh well, I guess I can take solace in the fact that I showered and dressed today. Now I can pour myself on the couch, in my messy house and amongst my piles of things to do and at least look presentable and smell good while I feel bad about everything not getting done and wishing I could sleep the day away.

I'm going to leave you now since I don't even have the energy to type anymore. But I'm going to give you an assignment: Find out what The Spoon Theory is if you don't already know.


Spring Fever

Posted by barefut , 25 February 2008 · 969 views

Spring is in the air and I feel myself getting antsy to make some progress in the yard and flower beds, however; my body groans at the mere mention of it. If I get around to Fall cleanup, it's usually sometime in mid Spring when my hands are less likely to fall off from the cold - yea, it's not called fall just because the leaves are falling off the trees.

I am ashamed and embarrassed of my landscape. I still have hanging baskets up out front with dead twigs in them from last Spring. The dog has pretty much destroyed what was left of the grass in the back yard that the boys hadn't already destroyed. And my flower beds are actually weed beds.

*sigh* :(

I always start out with such high hopes in the Spring - of how things could look around here. I dream of an English cottage garden out front anchored by my white picket fence that my dad and I (mostly dad) put up last summer. I love seeing the before and after of a hard days work and taking pride in my accomplishments, then being able to sit back and enjoy the visual beauty of what my own two hands created.

*POP!* (that was my bubble bursting) :P

Back to reality. The only thing my two hands have created lately is deep, painful splits in my fingertips and a lovely, patriotic, display of red, white and blue.

I hate to say that I can't do this or I can't do that anymore. Maybe I shouldn't resume skiing or river rafting again but I don't want to say that I can't. Same with gardening - though it's a far cry from skiing or rafting - it's also one of those things I love to do and don't want to say I can't anymore. I can and do work in the garden but just not with the results I used to see or would like to see.

And therefore I grieve a little for a way of life lost. Spring is supposed to be a time of renewed life but every Spring I am reminded again of things I can't do the way I used to do and the way I want to do. While Mother Nature is in her cycle of regeneration, I am reminded of my own degeneration.

Wow......what depressing thoughts for Spring! I vow to you all that this year is going to be different. I am going to make my project list and make early progress this year. And I'm not going to forget to plant the pumpkin patch again and I am going to get the dog kennel built and get the grass out back growing again if it's the ONLY thing I DO get done this season. And I will keep you posted on my progress even if it's at a snail's pace - dare I mention snails?!

Wishing you all some Spring time inspiration even if it's fall on your side on the world!


Walk a mile in my shoes and you'll have sore feet!

Posted by barefut , 23 February 2008 · 928 views

I have a shameful secret. Sometimes I want certain others to experience my pain.
The old "Walk a mile in my shoes" fantasy rears its ugly head. Not for sympathy. Though sympathy is a good thing, in moderation, it sometimes makes me feel uncomfortable - like I'm being a whiner.

When I'm short on patience with my kids, 9 times out of 10 it's because I'm in pain. Then I find myself wishing they could know how I feel so they would just please cooperate. When I start making mistakes at work, 9 times out of 10 it's because I'm distracted by pain, fatigue and/or just plain brain fog. The only perk scleroderma has besides the free face lift is getting to blame these things on it. So, I will. If I have to put up with scleroderma then I at least deserve the perk of getting to use it as an excuse for my lameness now and then.

What I'm in the market for is understanding. Not just for me, for everybody. Too many people are too quick to judge others based solely on first impressions, or the way one dresses or one's mood on a given day or even a single comment one makes. There's always a reason for everything. And nobody knows everything. So what gives anyone the right to judge someone else based on so very little knowledge of anything?

I am reminded of when I was talking with an acquaintance from high school many years after graduation. She said she thought I was stuck up in high school because I never talked to anybody. Truth is, I was shy and easily intimidated. About the farthest thing from "stuck up" as one can get!

First impressions are usually, in fact I'll say, almost always wrong. Nobody knows what someone is really like until they spend time getting to know them. Just like nobody knows what scleroderma or any other illness is like until they've spent time getting to know it.

I think it would come in handy (for us) if our doctors and caregivers could experience our pain so that they could know how to better treat us. After all, they have all the knowledge of doctoring and caregiving, the only thing they don't have that would make them true experts is the knowledge of our pain. Without that, isn't it really just a guessing game for them? They have to rely on on our testimony, which must be accurate, so that they can order the right tests and prescribe the right meds. Wouldn't it be great, like in a sci-fi show I saw once, if our doctors could simply lay their hands on us and know all that we are feeling - physically and emotionally - in an instant? Okay, I'm getting out there now...

Back to my soap box speech on understanding. In a nut shell, people need to give people a break and think twice before judging and labeling and jumping to conclusions. The grumpy person on the other side of the counter may be in constant physical pain. The quiet person may actually be shy, or sad. The angry person may have lost a loved one. Nobody knows anything about anyone until they've spent some time getting to know them and/or walked a mile in their shoes.



Posted by barefut , 22 February 2008 · 1,028 views

Running the gamut of emotions is tiring.
Everything hurts and yet how can I complain?

Today I chose despair instead of hope,
Then shame and more despair.

Everything hurts.
I am so tired of hurting.

I am angry.
It's not fair.

I dare not ask, "Why me?"
Why not me?

I miss my old body,
The one I took for granted,
And now it's gone.

And this mess that I am left with
Demands compromises
Every minute of every day.

I am tired of compromising.

I am tired of hurting.

I am tired.


Lunch Break

Posted by barefut , 09 February 2008 · 994 views

I have got to start adding a snack between my 8:30 yogurt and my 12:30 lunch. I am ready to faint with hunger.

One sip of my cup of noodle soup and I realize that I have GOT to have a sandwich. Not enough time left to go out, so I improvise with what I can find in the employee kitchen. The best I can do is someone's leftover cream cheese and a package of corn chips from the Honor Service Box. Crunchy, chewy; not bad. It'll have to do.

Half hour left of lunch break. Take a walk or take a nap? Let's see.....sunny, beautiful day......32 degrees.

Take a nap.

I laid down on the couch in the conference room with a partially deflated, promotional, mini beach ball for a pillow. It was quiet and I could hear the sound of the waves crashing on the shore just outside the windows. I realized that I hadn't heard that sound in a long time. It was like coming home. I closed my eyes and drifted off into my endless thoughts of things to do until my cell phone alarm woke me with 5 minutes to spare.

A larger than life picture of Ben Franklin staring at me with judgemental eyes and pursed lips told me it was time to go back to work.

I have a headache. Note to self - Don't use beach ball for pillow anymore.


Womb For Rent

Posted by barefut , 29 January 2008 · 1,025 views

Actually, if I was a healthy person, I'd make the space available for free. I loved being pregnant - growing a little life inside of me - it is such a privilege. I wish all women could experience the elation of pregnancy.

When I hear of women having like their 10th kid, my first thought is, "Is she nuts?!" Two boys was definately enough for me. Then I get a little jealous of all that pregnancy time. I hear some of you saying, "Is she nuts?!" I know, pregnancy isn't so great for everyone; in fact I had my share of complications too but overall the experience was bliss. I wouldn't trade any part of the experience for anything, not even the labor and natural birth.

My heart aches for women who want to get pregnant but can't. I could never be an egg donor but I would have no problem carrying another couple's baby for them. It would be such an honor and I think the ultimate gift not only for them but for me. Maybe that's selfish of me.

There has been speculation among the scleroderma research community that pregnancy and/or the childbirth process may be a trigger for scleroderma. (Sorry but you're going to have to look that one up yourself because I'm too terribly tired right now.) My first autoimmune symptoms did come when my first born was 6 months old.

I was put on this earth to be a mother and even though I could have been a mom through adoption, I still would not trade pregnancy and childbirth to be scleroderma free.



Posted by barefut , 16 January 2008 · 870 views

Mom is moving in with us in February through the summer. She will be a big help with the kids and the house. We are setting her up in our over-sized laundry room which was my preschool craft room.

I just went in and took down the last remnants of anything "preschool". I cried like a baby - still am crying. I miss it so much. I didn't know how much. It's hard to look at anything we did last year. The "All About Me" assignments with the kids' photos, the holiday crafts, the books we read all snuggled up on the couch together.

I miss our circle time songs, our deep conversations at snack and lunch time, the lessons about manners and sharing and recycling and safety. The day the firemen came and brought the fire truck and aid car, field trips to the library and out to ice-cream, show and tell...I miss it all. I especially miss the kids.

I've never been good at accepting that things change. I watched the town I grew up in change from quiet suburb to bustling city. People we care about change and move away. Kids grow up and lose their innocence all too soon. Sooner nowadays than when I grew up. I was still playing with dolls at age 13. Thirteen year olds nowadays are just way too big for their britches (did I really just say that?) - and their britches are way too small for them by the way.

I guess I'm getting old. That, I can accept. I just hate to see things and people I love change or go away. If I could have one wish. I would wish that I could time travel whenever I wanted. I would go back in time and hold my baby boys, and nurse them, and sing them to sleep - the lullaby I made up for them. And I would dance with them in the kitchen, holding them on my hip, sing the "dancing with my baby" song I made up and give them the dip and laugh when they squealed with delight.

But I can only time travel in my mind. So I will blow my nose and wipe my tears and save the memories for a rainy day.

My preschool may be no more but I can put it on my list of things I've always wanted to do - and did.


Pet Peeves

Posted by barefut , 13 January 2008 · 1,052 views

My dog stinks. I hate that. He stinks up my house. I can't make him go outside on account of his eyes - his big brown "Mommy don't make me go outside" eyes with those eyebrows that go up and make him look even more pathetic. So, my house stinks. I hate that.

Give him a bath? Yea, right. Me and what army? I just have to $ave up for the groomer.

OH! Pet peeves don't have to be about your pet? Well then - where do I start?

Tangled hangers
Tangled paperclips
Tangled hair
Gray hairs
Lack of hairs
Lack of common sense
Oblivious drivers
Can't find the tape
Can't find the scissors
Can't find anything!

My blood being replaced with concrete
Waking up feeling like I slept under a bus
The bitter med getting stuck in my throat and tasting it for the next 2 hours
Lack of hair
Clumsy hands
Cold hands
Painful hands
Lack of hair
Can't find any of my 100 pairs of gloves
Living in the bathroom days
Restless legs
Sleepless nights
Sleepy daze
Sleeping on an incline
Lack of hair
Feeling like a professional patient
Small veins

Did I mention lack of hair?

Whew! This feels good! :)

I'll bet there are a lot of sclero-peeves for those who have it a lot worse off than I do. I can't imagine dragging an oxygen tube around the house all day. Or doing your own dialysis at home. Or dealing with a feeding tube. Or having chronic finger ulcers - just to name a few.

So when I'm done griping about my sclero-peeves, I think of those worse off than me, send them some good vibes and count my blessings.

Your assignment for the day: list your pet peeves - sclero and otherwise. It's very cleansing. Then don't forget to count your blessings.

ISN members go to the Sclero Den and share your sclero-peeves under my peeve topic post



Posted by barefut , 07 December 2007 · 990 views

Here it is, the eve of my 9th day as single working mom and I am up at 11pm baking cupcakes to take to my eldest's class for his birthday tomorrow and organizing arts and crafts supplies to help my youngest make the ornament for his class's tree in the morning. I PROMISED that we'd do it in the morning. My oldest says to my youngest, "Wow, mom never promises anything!"

It's true. I never make promises because I don't want to have to break them and more often than not I would have had to break them. Everything always depends on how mom feels at the moment. Makes it hard to plan anything too far in advance. "Maybe, we'll see...I'll think about it; It depends...Too early to tell, ask me tomorrow..." - my mantras.

As I was filling the last cupcake tin with batter, I started wondering if I would be making these from scratch if I was still a stay at home mom. If I was still a stay at home mom, I probably would have had more time to make them, but if I didn't, then I would have had no problem saying, "Wow, I think we're running out of time to make cupcakes; I don't want to be up all night. I think I'll get some store bought ones" And then I would have helped my youngest with his ornament tonight. I wouldn't have had a problem saying that because I wouldn't have had anything to feel guilty about because I would always be there for my kids. Now I can't always be there. So, I do think guilt factors in here somewhere. As well as the fact that I don't want my kids to think that, now that mom is working, they'll have to get the short end of the stick.

Time has really become an even more precious commodity than before. I have spent every lunch hour so far running errands. I look forward to a day when I can just sit down and read a tabloid with the girls and eat my lunch! And by the time we get home from after school care and basketball practices 3 days a week, it's already past their bedtime! Did we even eat dinner?

We have 1 day a week that we're home before 6pm. That was tonight and it was crazy with cupcake batter flying and dog underfoot and cartoons blaring and youngest playing football in the living room and oldest sorting candy for the goody bags and me trying to get the dishes washed and the kitchen cleaned up and dinner on, and the phone ringing...oh, to be soaking in a nice hot tub!

I wouldn't trade a single precious moment of any of it. And now, I need to go to sleep!

Good night :)

I still have my name tag on! :lol:


First Day On The Job

Posted by barefut , 27 November 2007 · 928 views

Today was my first day back to work in the public world for the first time in 10 years, this time as a bank teller. I was nervous. Thank goodness for my boss, the branch manager, who is a very sweet, patient and down-to-earth woman, about my age (42). The other gals range in age from 19 - 23. I sense that my boss is grateful to have another 'mature' woman around - HA! - if she only knew...I feel about as mature as I did when I was 16.

It's going to feel a bit strange having these young gals teaching this old dog new tricks. By all rights, I am old enough to be their mother and then some!

It was nice to get out of my "mom uniform" of t-shirt and stretch knit capris, and into some "real" clothes. It helped me to feel a bit more grown-up. I even wore make-up, which I usually never do. I'm going to have to practice how to even put it on again without looking like a clown.

I was grateful for the quiet office with the comfy chair and view of the water where I spent most of the day reading the new employee orientation online. It sure beats potty training 10 toddlers all day. I was right to pass on the "assistant teacher" job for the 0 - 3 year olds who broke my back. Sweet as they are, and as much as I love to spend time with little ones, they have a way of sucking the energy right out of you in no time.

My boys enjoyed their time at the YMCA after school care in the school's gym. They got a snack and played basketball and board games until I picked them up at 5:30. We went out to our favorite restaurant for dinner on the way home. We call it our second kitchen but it's starting to become our first kitchen as much as we've been going there lately, and the staff has practically become second family. Such is the life of a tired, single mom with scleroderma. We've learned how and where to eat out frugally.

Wow! It's almost 9pm already! My boys fell asleep, one on the couch, one in the recliner, right after their dessert, without brushing their teeth. We're all going to have to get used to a new routine. Tomorrow will be a challenge, as my youngest has basketball practice at 6pm in the same gym as his after school care. The poor kid will be at school from 8:30am - 7pm, the last 4 hours all in that gym. At least my 10 year old can walk over to the library for a change of scenery. I'm gonna have to bring sandwiches for dinner tomorrow.

Adjustments, adjustments....bring 'em on. I'm ready for the challenge and the change. I think I'm going to like this job.

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