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barefut impressions


Midwest Snowstorm in Northwest Washington

Posted by barefut , 21 December 2008 · 763 views

I was born in the Midwest and I have seen their snowstorms and this is definitely one of them. How it got itself way over here, I do not know. I think it's lost.

The forecast calls for 70 - 90 mph winds in some places (one of those places just 15 minutes from me) and power outages to go with it. Right now it is snowing hard and blowing. We haven't seen this much snow around here in about 20 years. And the cold! 14 degrees the other day -- who knows what with the wind chill. My Raynaud's has been behaving pretty well up until the other day.

My dad's flight had to turn around and land in Boise tonight. We had no contact with him for about 2 hours after his flight was supposed to be here and didn't know what was going on. But he's all tucked into a hotel now and will call my sister tomorrow when he gets to the airport. I really hope they can make it to my house for the holidays!!!

I hear 'transplanted' and visiting Midwesterners say, "This is nothing. You Northwesterners freak out at the first flake." Well, yea. We're not used to the white stuff and have you seen the hills in Seattle? Where in the Midwest would you find 60+ degree inclines as a general rule? In fact, the other day, there was an accident in Seattle where 2 tour buses collided near an overpass and one of them ended up with about the first 1/4 of the bus hanging over Interstate 5. Everyone got off safely but if you could see the pictures... I'll bet the driver thought for sure it was all over.

The boys are sure enjoying the snow. Two snow days, Thursday and Friday added on to their holiday break. Wet clothes into the dryer, dry clothes on, hot cocoa warms them up, then it's back outside for another round of sledding and snowball fights.

Found a frozen rat on the patio this afternoon and another one, barely alive, hiding under the lawn mower. Kinda cute little guys - except for their creepy tails. The kids said they found a "pile" of frozen rats in the ditch when they were sledding. EEeeew! But still, poor little ratsicles.

Tired. Must sleep. Blog at 'cha later.

Stay healthy, happy, safe and warm!


Sclero Rant

Posted by barefut , 11 December 2008 · 847 views

After reading Lori's post on losing her husband to scleroderma I had to take timeout again for a good long cry. Every time I hear of this disease taking someone's life I feel like I have lost a member of my family even though we have never met.

My heart aches for the families who have lost their loved ones to this ugly, unpredictable, disease. Families whose only consolation is that now their loved ones are no longer suffering.

And then I get angry because its not fair. And then I want answers. I want more money for more research and I want answers. I want to know why scleroderma? I want someone to just fix it. I want a cure!


With a little help from my friends...and family

Posted by barefut , 03 December 2008 · 850 views

Well I managed to scavenge rides from people to get to and from work on Saturday and Monday. When my sweet neighbors saw me getting dropped off Monday evening, I got a call as soon as I got in the door:

"Are you a single mom in need of a vehicle?"

"Yes..... Why? Do you happen to have an extra one lying around?"

"Yes, we'll bring the Bronco over - why didn't you just ask?"

Why didn't I just ask? I did think of asking but couldn't bring myself to. It felt like I would be asking too much. Apparently not. In fact, they offered to tow Betsy home to save me the towing charges and the next Saturday he brought her home all fixed! All at a cost of $70 for the part and an hour and a half of his labor. Where my FORMER mechanics came up with their $700 estimate I will never know because I am never going back to them.

I am just simply blessed to have such kind, caring, thoughtful, generous, neighbors. The world needs more people like them in it. I hope I can be there for them someday as they have been there for me. This neighborhood is my home. These people are my family. We look out for each other. That's the stuff that makes me cry in movies.

On Friday when I broke down in my co-worker's office, she helped me apply for an auto loan right away. I have been wanting a more economical car to get around town - nothing fancy and under $5000. I figured now was finally the time. It usually takes something like this to get me in gear on things I should do.

In the mean time I replied to my dad's email; "How are you?" So I told him. Next thing I know, I am being offered an interest-free loan and a monetary gift to boot! After Betsy came home all fixed, dad said the offer still stands and urged me to take it.

Letting daddy buy me a new ("pre-owned") car is not standing on my own two feet as I really want to do. Even though I told him I would still accept his generosity, because he wants us to have a safe reliable car; I am having second thoughts about it, contemplating how it will make me feel.

Again, what can I say? I am blessed to have such a kind, caring thoughtful, generous dad. I miss him and can't wait to see him on his holiday visit.


I Cope?

Posted by barefut , 01 December 2008 · 849 views

It was a Friday and I had a meeting before bank hours at another branch in town. When I went to leave, 'ole Betsy wouldn't start. I hitched a ride with a co-worker as she was leaving. My co-worker let me borrow her car on my lunch break to see if I could get Betsy started. I couldn't. Still, I wasn't panicking. I was sure that my mechanic would be able to just wiggle something and away she would go. After all I had just spent $2500 on her in the last year, almost everything was new, what else could be wrong?

I dropped off the keys with him and said call me. When I didn't hear from him by late afternoon, I called him. I was not prepared for what I heard on the other end of the phone. Fuel pump. $700. That will teach me to be optimistic. You'd think I'd have learned by now, to always expect the worst and then be pleasantly surprised. Somehow, I had forgotten this; my way of life. Now here I was at work, with 3 1/2 hours to go until closing time, with a quivering lower lip and and tears about to explode. I heard myself say, "I can't do it. I can't do it anymore". I hung up the phone, walked into my co-worker's office, sat down and released the floodgates.

She was such a sweetheart, gave me a big long hug and let me cry on her shoulder until I regained my composure. It felt like I was crying for more than just a broken down vehicle. I was crying for all that it meant for me to be without a vehicle. I was going to have to ask for help again, which to me means being a burden on someone, and just as I had begun to stand on my own two feet. Did it ever end? How in the world was I going to cope through this one?


I Cope

Posted by barefut , 15 November 2008 · 881 views

As I lay in bed last night, I thought about coping. Kind of eerie how when I read Barb's last blog, the word cope kept popping up. Sometimes we seem to be on the same wave length. Then again, coping is a common thread amongst us sclerodermians so maybe I shouldn't read too much into it.

When I was a sophomore in high school I made myself and my best friend a T-shirt for gym class that said on the front, "That's okay" and on the back, "I Cope". I think people liked it. Teachers and peers alike were always commenting on it. I actually still have mine, sort of a souvenir of the time.

Last night I thought about that T-shirt and what I had to "Cope" with in high school compared to what I have to cope with now. I realize everything is relative. Being a sophomore in high school is no piece of cake, although at the same time, 16 was one of my best years ever. I wouldn't mind living 16 again. Especially if I could do it knowing what I know now.

The old saying, "What doesn't kill us makes us stronger" comes to my mind when I think about all I have had to cope with over the past 15 years. I really do believe that. I do think I am stronger because of all I have had to put up with. And you know what? I am kind of proud of myself for surviving it all too.

Survivors. We are all survivors. Not only of scleroderma but of life. I survived my mistakes and actually learned from them. I have had to learn to give myself a break for making mistakes too.

Life is a continual learning experience. I have to look at it that way. Especially after having to cope with scleroderma. I ask myself, why am I supposed to be carrying this burden and what am I supposed to be learning from it? How am I supposed to become a better person because of it? Let me count the ways.......


Mad House!

Posted by barefut , 12 November 2008 · 902 views

It seems Barb and I live parallel lives on opposite sides of the world. Only whereas Barb has a menagerie of animals making chaos for people, I have a menagerie of boys making chaos in my house.

Looks like a bomb went off in here. I look around and just want to cry. I could pick up and clean up and it would look good, for about a half an hour. I hate living in a mess. No matter how hard I try, I just can't relax in a messy house. It's depressing. Even more depressing when I don't have the energy to pick up.

Now that I have a neighbor coming here 3 days a week to watch the boys after school, it motivates me to at least wash the dishes and clean the bathroom. In one of my 'woe is me' posts, Shelley suggested inviting people over now and then to help motivate me to get off my duff and clean house for company. Although Shelley, of course, didn't say 'get off my duff'. It works. The shame of having a neighbor walk into the boys' gross bathroom really gets me into gear - although usually at the last possible minute.

I have quit bothering so much when my sister comes over any more. She knows me, so who am I kidding cleaning my house for her? Speaking of sister, she came over this weekend and helped me finish painting my bedroom. We got my mattress onto a bed frame, hung my curtains and artwork and now I have a peaceful retreat. I don't ever want to want to leave it especially since the rest of the house looks like a war zone.

Four boys went out to play! I'll see what I can get done while they're gone......Never mind; a knock at the door brings the neighbors and their dogs over. Chaos Central. Anybody have any spoons?


Ahhh Sweet Solitude

Posted by barefut , 07 November 2008 · 953 views

A giant bowl of popcorn to go with my butter and salt, a glass of wine and the boys' leftover chocolate; who could ask for a better dinner? And I get to enjoy it in peace and without guilt while the boys are at the neighbor's house.

Adult indulgences -- so few and far between. I want to go to a grown-up movie, even if it's by myself. The last grown-up movie I saw in a theater was Jerry Maguire -- or was it the Fugitive? Either way, it was like 11+ years ago!

My co-worker's kids were at their grandma and grandpa's house for the night. She was meeting a friend for dinner after work. I can't wait until my sister, brother-in-law and my dad get settled here. I would love to be able to know my boys were safe and secure with family so I could go out for a night.

But solitude for me is hard to come by and I am savoring every minute of it right now as I feel my arteries clogging and the cellulite forming from my healthy (NOT!) dinner. Well I guess the red wine will help to combat the bad effects the butter and salt has on my heart. What to do about the cellulite I do not know.....? Exercise? What is that?


Slacker Mom

Posted by barefut , 05 November 2008 · 935 views

Okay Barb, do you want to stop making me cry now? :P

I couldn't agree with you more on all points except for maybe the part about me dealing with parenthood immaculately. I muddle through. Seems I am constantly looking for role models and asking every parent I know, "Do you run into this (or that) - what do you do?" As with Scleroderma, I guess I just don't want to feel all alone in this uncertain adventure called parenthood.

Then there's my two subtypes of being a Parent:
1. Single Parent
2. Single Parent with Scleroderma

Yes, we are rare. I would like to bend the ear of other single parents with scleroderma. I don't know of many. Maybe I will put out an all points bulletin in the Sclero Den. I think I need to be relieved of some of my guilt by knowing I am not the only one who parents like me. For me, sclero mom equals slacker mom.


A closer look

Posted by barefut , 04 November 2008 · 912 views

Barb, I just read your latest blog through streaming tears. It was beautiful and you have a beautiful daughter.

How timely too! This is the second time tonight I have been prompted to take a closer look at how scleroderma has affected my family.

No matter how hard I try to carry on as if scleroderma isn't a factor in my life, or in the lives of my boys, it is there. It will always be there and it does change their lives too because it changes the way I parent my children.

If I had a dime for everytime I have broken the golden rule of parenting, BE CONSISTENT, I could get out of debt. Hard to be consistent when living with a disease where you never now from one day to the next how you will be feeling. When I am feeling good, I feel in control. When I am not feeling good, I let my boys get away with stuff because I am too tired to fight about it.

I also wonder what messages I am sending them when I let my bedroom become messier than theirs because my bedroom is my last priority in the house. How can I look them in the face and say, "Clean your room."?

How can I sit on my 'lazy' rear and let the recycling and the laundry pile up and the yard go untouched and let the refrigerator go bare and eat out all the time because I am too tired to grocery shop and cook and clean the kitchen? This is not how I want my boys to be raised nor how I want them to turn out as adults.

I constantly ask myself, am I really doing the best I can? Can I do better? At what expense?

As for how Scleroderma has affected my friends and family, well I cannot say other than I know that they must worry. And I know that they have really been there for me when I needed it the most.

My boys are still so young and my scleroderma is not visable to them so if you asked them how my scleroderma has affected their lives, my six year old would say, what is scleroderma? My 10 year old would have plenty to say about my parenting, I'm sure, but would not attribute any of it to scleroderma. Maybe I shouldn't either?


Cold, Fat and Lonely in Paradise

Posted by barefut , 23 October 2008 · 840 views

Yea Barb, I know what you mean. Thank goodness I only travel to the concrete jungle, I don't have to live there. I am blessed to live in a paradise with only the weather to complain about (and the occasional rubber necking tourist when I'm in a hurry) I wouldn't mind being someone's bit of fluff either. :D Do I get Tarzan along with that title? But a bit of fluff I 'aint. More like a ton of lard. :lol:

Oh, you asked the significance of the Luke Skywalker cardboard cutout in my rheumatologist's lobby. I think Luke was the office manager's significant other. Little did she know he was already taken. We've been an item since I was 12. I still have all his magazine photos in a large manilla envelope.

I have gained 20 pounds on Prednisone. Tapering down by 1mg a month will take forever. So will taking off this weight. Can't say it was worth it now. But that's also because I can still move somewhat. Oh the things we must 'weigh' in considering meds. :rolleyes:

Autumn is in full drizzle and the leaves, like my fingers, are turning colors and falling off of their limbs. Time to dig out my 100 pairs of dollar store gloves. I learned early on to buy all the same color if I want to match for longer than a day.

I am freezing so I have to make this another short blog and go warm up in the shower. I wish I knew how to relight the pilot light on the propane fireplace. Probably better off anyway; propane costs as much as gasoline!

Stay Healthy, Happy Safe and WARM!!!!!

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