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barefut

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Blog Entries posted by barefut

  1. barefut
    In thumbing through a specialty catalog the other day I came across 2 items that reminded me of a couple of members here. One was a T-shirt that said, "It Is What It Is". The other was an outdoor 'welcome' mat that said, "Close The Door The Chickens Will Come In!" I'll let you all try and figure out who I am talking about. ;) And if anyone wants the name of that catalog, feel free to PM me.
     
    I may have over done it a bit in my workout tonight. Sharp chest pains. Please, if I have to have a heart attack, don't let it happen until my insurance kicks in. I have 8 more days.....can you put heart attacks on hold?
     
    I have a gripe to vent. "When does she not have a gripe to vent?" I hear some of you who know me well and/or have worked with me, say ;) But listen, I've been keeping all my gripes to myself lately and honestly there haven't been a whole lot either. But this one has to come out.
     
    I need to know why every single public woman's restroom I have ever been in that has gigantic toilet paper roll dispensers, has them mounted so low that you have to stand on your head to dispense the toilet paper?! Is there some kind of regulation, mandate or standard building code that requires this? What logical reason must there be for not installing them 2 feet higher?
     
    Is it just one of those things that has always been done that way and now that we have King Kong sized toilet paper rolls enclosed in plastic dispensers (which when holding a full roll is so heavy that the tissue can't pull it's own weight and breaks off in little tiny pieces in your hands) that no one has stopped to think, "Gee, this would be hard to reach even for someone not in a delicate situation; maybe it should be higher?"
     
    I have a trophy for the first establishment I visit that has this type of dispenser installed with common sense.
     
    Okay, now on to the motion sensor, automatic flushing toilets which flush (and splash) on you when you lean forward into your headstand to tear off your 1200 thumb-sized toilet paper rations. Yea, gotta gripe about that too. And why does the toilet sometimes choose not to flush at all? Huh? Then you're looking all over the place for the over-ride switch/default flusher button (or else the candid camera) because they never put them in the same place from one manufacturer to the next. I imagine a bunch of people in security laughing their socks off as they sit there with a remote control flusher, just messing with people.
     
    Well, I guess that's enough potty talk for one night. This blog may not even be approved!
     
    1:25 am. Going to be a fun day today. Man I wish I could sleep!
  2. barefut
    My brain turned to mush at work with a balancing nightmare. If you work in banking or with numbers at all, I'm sure at one point or another you've experienced mushbrain. I was relieved to know that there is such a thing and that it was not just me.
     
    One of my very understanding and sympathetic supervisors, bless her sweet soul, told me that mush brain is very real and that if you can remember your name when asked, or even understand the question, then you will recover quite nicely.
     
    I stared at her blankly. Uhhhhh What? My name? Uhhhhhh, my name is.......What is my name??!!!
     
    Symptoms of Mushbrain
     
    Early warning signs
    1. A feeling that something isn't quite right
    2. Attempts to research the cause of the feeling are foiled time and time again
    3. Frustration ensues but must be squashed
    4. You are now overwhelmed, the clock is ticking, there is no one to help you
     
    Early stage Mushbrain attack
    1. You overcompensate your lack of knowledge with gushing friendliness
    2. In an attempt to regroup you only become more disorganized
    3. Constant interruptions are slowly eating your brain cells
    4. You will take advice from anyone
    5. Eyes become glazed
     
    Full blown Mushbrain attack
    1. Headache (what doesn't ache?)
    2. Loud ringing in the ears
    3. Blank stare
    4. Inability to answer simple questions
    5. Inability to utter a comprehensive word
    6. Fight or flight instinct kicks in
     
    Complicating Factors
    1. 11:00 am lunch, no afternoon break, it's now 5:30 pm
    2. You must find someone to pick up your children at daycare before 6:00pm
    3. No one you call is home
    4. Four different people are telling you 4 different things to do all at the same time
     
    Although fleeing did cross my mind, I stayed and fought to the bitter end which is a punch line in itself because the answer to the balancing nightmare was sitting on the copy machine the whole time.
  3. barefut
    Oh dear Barb what can I say?
    Your poems always brighten my day. :D
     
    You are so clever, you have such wit
    Your writing you'd better never quit
     
    I am so sorry you are feeling pain to the bone
    I want to tell you, you are not alone.
     
    My hips are rebelling going up the stairs
    And my knees are screaming at the weight they must bear.
     
    My shoulder too is giving me grief
    When can we ever find some relief?
     
    The pain has gone up my neck and down my arm
    This dismobility is causing alarm
     
    Why must we work harder than anyone else
    To do the same things and with so much pain felt?
     
    I am not looking for sympathy either
    (Just a Rhyme for either right now)
     
    Your poems on life always amaze
    I hope you're not shy of a little praise
     
    You make rhyming look easy but it 'aint all the time
    Like Yoda I write just to make it rhyme
     
    So, thanks once again for another smile
    And la -la -la something to rhyme with smile
     
    Love you!
    Feel better soon!
  4. barefut
    Barb, your 3 month checkups sound kind of like mine. A two and a half hour minimum, one way travel time, crossing 2 bodies of water, one by floating bridge that is usually open to submarine traffic every time I cross it and I must wait at least 1/2 hour. The other body of water crossed by ferry usually during commuter time. Then a treacherous hill climb through downtown traffic and dodging pedestrians running to beat the light. Finally to the top of the hill and into the parking garage. No sense even looking for a space until I get to the top floor. Then a 6 story descent by foot down the stairs to street level.
     
    Once inside, a wait in line to check in, then the elevator to the 5th floor where I cross a skybridge to the next building and go up the elevator to the 6th floor. Around the corner and a life size cardboard cutout of Luke Skywalker dressed in real scrubs greets me at the reception desk. Seeing my childhood crush waiting for me at the end of my long journey is totally worth it all. :D The gals at the desk promised me I could have him. They even offered to carry him down to my car for me. But he belonged to their boss and she wasn't there that day, so I was a little hesitant about taking him. Upon my next visit he was gone. :(
     
    Then yea, a 5 minute face to face with rheumatologist and it's all the way back home and all at a cost of about $120 for gas, ferry, parking and at least one meal on the road, not to mention missing work. So, I talked my rheumatologist into seeing me every 6 months as long as I was feeling the same. I can get my bloodwork done locally and they'll fax results to her. When I see my pulmonologist and have my PFT every 6 months, I see my rheumatologist too. The clinics have been great at scheduling my appointments all within an hour of each other.
     
    As far as complaints or questions to ask, I really don't have much to say anymore either. "Uhhh......I got nuthin' - wanna look at my toe?" So at last visit I showed her my painful pinky toe with the brownsih toenail (which I have concluded is a stubborn fungal infection not gangrene). She said, sometimes people just have it cut off. Knowing what she meant I teasingly said, "The toe?!" :o to which she replied, "No, the nail." <_< I think she thought I was serious. Now she thinks I'm a nut case. I was concerned about the healing process with Raynaud's and all but since she didn't seem at all concerned, I think I will have it cut off - sick of dealing with it.
     
    What a lovely discussion! :P
  5. barefut
    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.
     
    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!!!!!
  6. barefut
    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?
  7. barefut
    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.
  8. barefut
    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?
  9. barefut
    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?
  10. barefut
    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.......
  11. barefut
    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?
  12. barefut
    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.
  13. barefut
    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!
  14. barefut
    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!
  15. barefut
    I have what's left of tonight and what little time I will have after work tomorrow to clean the house for dad's visit. There is a list as long as my arm of stuff to do. I will have to shave it down and prioritize it into a list as long as my pinky for the amount of time and energy I actually have to get anything done.
     
    1. unclog master bathroom sink
    2. clean master bathroom
    3. reclean boys' bathroom
    4. wash dishes
    5. mop kitchen floor
    6. clean out Betsy
    7. make up bed for dad
    8. finish laundry - wash/fold/put away
     
    That's about as long as my pinky right there. But there's also the holiday stuff I have to think about too....
     
    1. menu plan
    2. grocery shop
    3. finish gift making
    4. wrap gifts
    5. purchase stamps & mail cards
    6. have flowers sent to grandma
     
    I am officially overwhelmed. How did time get by me this year? I usually start holiday planning the first of October because my oldest's birthday is in December too. I put his birthday party off until January this year so I really don't have any excuse for procrastinating all my chores other than maybe pure laziness - oh wait! No such thing as laziness for a sclerodermian. I am pacing myself! That's right. We have that privilege as sclerodermians to eliminate the word "lazy" in any form from our vocabulary when referring to ourselves.
     
    So here I sit, pacing myself, and pacing myself, and pacing myself.....
    And not knowing where to even start; I started procrastablogging. :P
  16. barefut
    Today was doomed from the get go. Yet with each little, (medium and big) setback, I kept a positive attitude and kept telling myself, "It's just a bump in the road. Fix it, learn from it and don't let it ruin the whole day." Like water rolls off a duck's back, I let the day's mishaps and frustrations roll off of my back until the day was done. And then I took 10 minutes before I picked up the kids and sat in Betsy Big Rig and cried.
     
    Okay, good to go for another round of life. Today was really, really not good (to put it nicely). I am going to give myself a pat on the back here for handling the day with patience and maturity and professionalism in the face of total frustration and impending meltdown. I am just thankful that it wasn't worse than it was because it easily could have been. And I know I was not the only one with the same kind of day. It's nothing that a glass of wine and a good night's sleep won't fix.
     
    Well I failed to mention to y'all that I did go ahead and have pinky toenail cut off. Good days and bad days with it so far - a pretty long healing time! Yesterday was the first day since Nov. 27th that I walked without a limp. Been walking on the ball of my foot to avoid putting weight on pinky. This is best accomplished by keeping knee from bending so I end up looking like Frankenstein. You should see me go down the stairs at work! Then I decided it was time to get the sock fuzz out of the wound with a cotton swab. Yeouch!!! Back to my limp again.
     
    For those of you who have never had to have a toenail cut off I will tell you it is an amazingly painless procedure - until the numbness wear off!!! You would think that soaking 3 times a day in warm water and epsom salts would be soothing for such an operation. Think again. It is excruciating! I had to leave out the epsom salt and still...not exactly pleasant. But, I sucked it up and took it like a woman. Looking forward to the day when I won't have to limp again though. I'm starting to develop a tingling and numbness in my ankle from avoiding the outside of my right foot. I'm also growing weary of answering people's questions of how did I hurt myself. It's just a little gross to discuss with near strangers. You all, I don't mind. You all know I'm gross.
     
    I tried simply telling people that I had some minor foot surgery and they just get nosier. They want to know all about it and then they always have their own story to tell. I'd love to share one of the most hilarious stories I have ever heard with you but since it is not my own I don't believe it is allowed here. I'm not so sure this particular story isn't just an urban legend but either way, I would be someone telling someone else's story about someone else. I guess that would make it pretty anonymous however. Just trust me. It was F U N N Y (and meant to be).
     
    Oh the holidays......oh the meddling weather. I will be lucky to see my family on the holiday with the roads the way they are. Sis and I decided that my trying to pick up dad from the ferry on Wednesday after work was just not a safe idea, even with Betsy's four wheel drive. So, dad will come with Sis and brother-in-law on the 25th. The first such holiday eve ever, without my dad - so sad. But I guess I just have to look at it not as breaking tradition but as starting a new inclement weather tradition. The boys and I will have to do something special just the three of us. I am just bummed that I am going to have to miss about 1/2 my annual designated dad time due to having to work and 2 feet of snow on the roads.
     
    Must sleep now. Tomorrow is another day; another opportunity to start fresh.
  17. barefut
    Family made it here for the holiday and we had a great time. One of my gifts to the boys was a bedroom makeover. I wrapped a paint tray and paint samples along with a note. Turned out that it ended up being a gift from my sister and dad. While I was at work Monday they did the whole thing for me. The boys had a great time. They ended up trading rooms and ever since they have kept their rooms immaculate!
     
    Spent New Year's Eve at my sister's house. It was nice to get out of town for a change. Last time I left the Peninsula was 5 months ago for my doctor appointment. She spoiled us with a big ham dinner New Year's Eve and a champagne breakfast New Year's Day. Then we went out to see a movie. It was a nice little getaway.
     
    My little one has been crying that he misses his mom. I work too much. I am always gone and I never play with him anymore. So yesterday we rigged up his bike with duct tape and a paper towel roll so that it sounded like a dirt bike. I really miss doing stuff like that. Made me long for summer as it was nearly 10 below outside! Or at least it felt like it.
     
    I've been spending my weekends one day cleaning house and catching up and one day doing nothing. Little one says all I want to do is watch football. Even though I'm here I guess I haven't really been here for him. Gotta start planning things to do just the 2 of us.
     
    Resolutions. I have a lot of them.
  18. barefut
    My cat decided it was time to take down the holiday decorations - at 5am this morning. Then he serenaded me with my son's guitar. Why did I decide it was a good idea to get a cat?
     
    We had a windstorm this week that blew my glass top patio table over and shattered it. I stood at the kitchen window and watched it happen. It was like slow motion. Nothing I could have done to stop it. Surprisingly, I wasn't all that upset about it. I'm sure I will be when summer comes and I'm eating out of my lap. I was mostly perplexed about how in the world I was going to get a million pieces of glass out of my grass. When I came home from work on Tuesday it was all cleaned up! Two of my dear sweet neighbors had come over to walk the dog, saw the mess and cleaned it up for me. Now what do I do to deserve such precious people in my life?
     
    Had the day off Wednesday. Really nice to have a day off in the middle of the week to take care of business that can't otherwise get done on the weekend, and nice to do it without kids. But a midweek day off just means I'm working Saturday but that's okay other than the fact that it's Thursday and I haven't arranged childcare yet.
     
    Got my 2007 tax return back (long story, don't ask!) so after going for months without any food in the house I went to the warehouse store and stocked up. When I saw, for the first time, the checkout gals loading a pallet cart for me, I was frightened of my total! Just under $300 with a coupon. Shouldn't have to go back for a very long time. Also got caught up on all my bills. Feels good but still broke.
     
    Well back to work today gotta go......
  19. barefut
    Lesson #1: Just because the phone rings doesn't mean you have to answer it.....especially when you are asleep on the couch and jumping up to answer it means that half way across the livng room, your knee will give out and send all 190 (okay 200!) pounds of you flying at top speed into the wall and when you reach out to catch yourself on the window sill, your elbow will buckle leaving the telephone stand to break the rest of your fall onto your ribcage.
     
    Lesson #2: Just because the base of your left thumb swells to the size of an egg and you can't move it, doesn't mean it's broken.
     
    Lesson #3: Just because your ribs don't hurt that much today, doesn't mean they won't hurt a lot tomorrow.
     
    Lesson #4: When the doctor says soak your toe 3x/day, do it.
     
    Lesson #5 Just because your ribs hurt a lot tomorrow, doesn't mean they won't be unbearably painful the day after that, rendering you nearly immobile and unable to laugh, sneeze, cough, clear your throat or breathe!
     
    *****************************************************
     
    Gripe #1: Regarding flourescent bulbs - When I turn a light switch on, I want to see right now, not 5 minutes from now! (but in the name of conservation, I guess I can cope <_< )
  20. barefut
    Little One is right. I work too much. Either that or there aren't enough hours in the days. I am constantly playing catch up, at home and at work and with sleep. How nice it would be to be able to stop the clock while I caught up on everything. But if I could do that, then why don't I just materialize a clone?
     
    Why not for every hour we work, we get an hour of free time? Bliss time - time to do whatever we want to do, not what we need to do. In a perfect world... With my hours I would visit friends I never get to see. Play with my boys. Go to the ocean. Read. Redecorate my house, my yard, myself. Drive to Alaska. Take pictures. What would you do with your hours? Do you have hours you are not using? Can I use them?
     
    Time, more than anything else, governs our lives. Do we manage our time or does time manage us? I had a Sociology professor who made us really think about time. He said if we all had all the time in the world or if time was not a factor we could all be millionaires.
     
    Time management: our next topic at the staff meeting. I am looking forward to it.
  21. barefut
    Short term goal: stay in my jammies all day. Long term goal: stay in my jammies all day every Sunday.
    It's 2:30 pm and so far I have accomplished my short term goal. Even went out to breakfast in my jammies. Our local cafe gives customers 1/2 price breakfast if you show up in your jammies - but well that's once a year in February and it wasn't today, but I didn't care. And nobody else did either. I like that in a town. Of course my jammies are flannel pants and a tee shirt so I just blended in with the rest of the crowd.
     
    Biscuits and gravy, scrambled eggs with bacon. When the waitress asked me if I had enough gravy I had to think: Yes, I had enough gravy before you even put the plate in front of me. The proof is in the pudding or rather in my thighs. The pudding is in my thighs too. I need to come up with some new goals.
  22. barefut
    Good Sunday morning all,
     
    Jammie Day. Catch up on housework and laundry day. Reload the weekly pill container day. Rainy Day. Procrastiblogging day! :) Wish I had a laptop so I could curl up in my recliner and blog away instead of sitting at this hard, cold, uncomfortable desk in the kitchen.
     
    Basketball season comes to a close and Baseball tryouts are next Saturday. My favorite sport of the season. Not to brag, but my boys have been blessed with exceptional athletic abilities which makes watching them even more fun for mom. Big One will be trying out for Majors and it will be Little One's first baseball season (T-Ball last year). I am starting to stress about how I will get them to practices and games and am hoping they will have their practices on the same days and their games on different days and that my boss and co workers will be kind enough to let me off early enough to see their games or else I will go crazy!
     
    I got flowers for Valentine's Day! I haven't gotten flowers for Valentine's Day since my high school sweetheart worked at a florist. My flowers came from my Little One's Big Brother, of the Big Brothers Big Sisters Program. The card said, "To the best mom in the world". That really made my day. It was a Saturday and I was working (as usual) when the delivery came. I had a customer so I couldn't read the card right away, even though my customer urged me to. Just so y'all don't get the wrong idea, he's much older than me and happily married. But it was kind of fun wondering who sent them in those few minutes of anticipation.
     
    Both of my boys have been perfectly matched with Big Brothers. They are pretty amazing people. My oldest and his Big just had their one year match "anniversary" in January. Over the past year they have gone to movies, swimming, trail bike riding, scuba diving, and built a tree fort together in the backyard. Later this month he is going to take Ryan flying. He is a commercial pilot and former flight instructor. They also have started building a sailboat.
     
    Little one's Big is a retired businessman, married, with two grown boys of his own. Together, they play all kinds of sports, go exploring downtown, and have started a lower level addition to the tree fort. They like to ride with the top down in his Porsche. Yesterday he took both my boys to their basketball games in the Porsche with the top down. As I followed them in 'Ole Betsy, I laughed out loud at how my boys are riding in Porches and flying airplanes! Who would have thought ?!
     
    Well as much as I wish they would, those chores aren't going to do themselves....
  23. barefut
    Been having some gastrointestinal and pulmonary issues that have been bothering me more in the head than in the lungs or gut. Makes me wonder what is going on in there. Of course I just had my 6 month check up and failed to mention the gut stuff. The shortness of breath which I did mention to my pulmonologist, didn't seem to phase him. It bothers me however, since I haven't had to deal with it for such a long time. Maybe it is just a flare? Maybe it is to do with my fall upon my ribs? The fact that it only occurs with exercise makes me worry about pulmonary hypertension.
     
    My pulmonary doctor asked me to participate in a study. A right heart catheterization is involved. Sounds scary but folks I talked to here who have been through one assure me not to worry. I try not to worry but when I see that possible complications include death, I wonder if it is being irresponsible of me, as a single mom, to put myself at risk? Or is it irresponsible of me as a sclerodermian to not participate? I'll bet there's more of a risk of me getting killed by a bus while crossing the street than during a right heart cath. I do feel a responsibility to participate. And if I gotta go, I'd rather go in the name of research than in the name of a bus.
     
    One purpose of the study is to evaluate the effectiveness of non-invasive screening methods for pulmonary hypertension and pulmonary arterial hypertension to see how well they can predict and confirm diagnosis in scleroderma patients. Right now, a right heart cath is the standard method of testing for PH/PAH and it is invasive and expensive. Since RHC is so invasive, it is only used to confirm diagnosis not to screen for it.
     
    The other purpose of the study is to see how many scleroderma patients develop PH/PAH. The study will be performed in about 70 hospitals in 11 countries with hopefully 500 sclerodermians. Each patient will be followed for 3 years. Results should be concluded in the year 2013. So that's it. Pretty cool.
     
    So, in light of my recurring shortness of breath and the anxiety it evokes in me, and since early detection of PH/PAH is important in treatment and prolonging life, I think this study couldn't have landed in my lap at a better time. It's probably no coincidence that my doctor got the "green light" less than an hour before my appointment, at which time he asked me.
     
    I want to thank Shelley B) (smart smiley) for clearing my brain fog :huh: (confused smiley) in the identification of the thingy that clips onto your finger and measures your oxygen saturation level. OXIMETER!
    I knew that once. :( Really. I did. ;) I gotta get me one of those.
  24. barefut
    April 10th, screening appointment for the study. I need to score less than 60% on my PFT for diffusion in order to qualify. My PFT a month ago was 58% so, we'll see.......
     
    Been home all week with sick kid(s). Big One has a double ear infection and a sinus infection! I feel SO bad because in hindsight I should have taken him to the doctor sooner and I could have saved him at least a day or two of agony as well as maybe saved myself some time off work. I have no sick, or float days left and had to dig into my vacation as well. He is much better today now that he has a couple of days of antibiotics in him. Now, my head is filling up! I need to be done with whatever is coming my way by Monday because I can NOT miss any more work!!! Been trying to use the time off this week to catch up on house chores, though I feel like I'm spinning my wheels. I tackle one area only to come back to the place I just finished and find it a mess again. How does that happen?!
     
    I have enjoyed being at home with my boys this week but I hated to be missing work (The grass is always greener on the other side of the fence.) It was nice to be able to take Little One to his baseball practices, nice to make dinner before 7:30 pm and nice to help with homework without falling asleep. Lately I have been experiencing extreme sleepiness and fatigue at about 2:00 - 3:00pm everyday. It's like my body says, "Okay, I'm done for the day, time to go home." Working part time and getting paid full time hours would be a dream! I want to work. I like to work and I love my job but the hours are killing me and my family life.
     
    If I could only clock out at 5:00pm instead of 6:30 it would make a world of difference in my single momhood life. That extra dinner time hour is crucial family time with sports practices and games to get to, dinner to be eaten, and homework to be done - not to mention sleep! Listen to me complain - I'm LUCKY to HAVE a JOB!
     
    Feeling dizzy and feverish........better go now.
     
    Stay Healthy Happy Safe and Warm!
  25. barefut
    Took Little One to the urgent care at the hospital tonight upon his second, "My ear hurts". This is the kid who holds the record for most ear infections as an infant. This is the kid whos ER doctor told me when he was 2 years old, "You know, ear infections will clear up on their own - you don't have to have antibiotics every time." Okay doctor, tell that to this screaming kid at 3 am! Anyway, I wasn't going to wait another day this time.
     
    I'm still feeling guilty for not taking Big One in sooner. Poor kid. I feel awful about that. He has not had the history with ear infections like my youngest and so I let it go until he had a sinus infection too! What kind of mom am I? That borders on neglect! Handcuff me and take me away. If there is a silver lining (and I am always looking for one) I got to spend some much needed quality time with my oldest this week. We worked on his homework together. He gave me refresher courses in American colonization and plane geometry. I learned a lot! We also had some good talks, played board games and laughed a lot. That kid cracks me up. I am a very lucky mom.
     
    I'm kind of a lonely mom too. I've been single for 3 years now. It is really hard for me to see all the happily married couples of my sons' team mates at practices, games and the award dinners. I feel like an outsider. I will admit, I am jealous. You can tell these couples are truly soul mates and completely devoted to each other and their kids. I want that. But I am so far from that. I haven't even been asked on a date - or asked anyone myself. This small town does not help.
     
    I am about ready to go online in search of someone. That's economical. I figure life is too short you know? I don't want to spend what little time I have left on this planet wishing I had someone else's relationship; waiting and looking for someone in this small town who might be compatible. And I don't want to play games either. I want to lay all my cards on the table, cut to the chase and get to the good stuff. I've always been a no nonsense kind of girl. Wow, this is starting to sound like a profile.....maybe I'll work on that.
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