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barefut

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Blog Entries posted by barefut

  1. barefut
    Today Little One woke up at 5:00am hungry but couldn't do much with his oatmeal yet. His fever is gone! And it's raining! Never thought I'd be glad to see the rain but if it washes some of the pollen out of the air for awhile, I'll take it. I woke up myself the other day with a swollen face and bloodshot eyes. Speaking of waking up, I have discovered that if I take 800mg ibuprofen at night, I wake up much better. I am down to 4mg prednisone, so up goes the ibuprofen.
     
    So, what to do today, if Little One (and my wallet) is up to it, I guess I'd better hit the laundromat. And check the mail for my tax return. Maybe get some food in the house. I hate grocery shopping. Yes, hate. Strong word but that's how I feel. I wish food would replenish itself.
     
    I remember a time when I actually looked forward to grocery shopping. Big One was little and not only was I a stay-at-home mom, I was an isolated, no friends mom. Grocery shopping was like going to a party. I actually planned menus, made lists and comparison shopped. Being around people was comforting even if they were strangers. If I was lucky, I'd run into someone I knew and get to talk their ear off about everything.
     
    How things change! Now, being around people is starting to wear on my nerves. My solitude is precious. I'm lucky if I can get in and out of the grocery store without seeing anyone I know. I can't remember anything long enough to put it on a list, planning menus takes place in the frozen dinners aisle, and comparison shopping is limited to 'which store can I get in and out of quickest?'
     
    Well, feels like one of my pills got stuck today, better go see if I can make it go down before my esophagus burns up.
  2. barefut
    If you dream about exercise, does that count? I woke up this morning thinking I was all firm and fit and healthy. What a rude awakening! Then I noticed the headache. And its raining. Silver lining: It's not snowing!
     
    My cat is trying to pet himself with the vacuum cleaner. My youngest is staring at me. "Why don't you pet your poor cat?"
     
    "Nope, I'm busy."
     
    Big One streaks through the house looking for clothes. He can't find any because they are all folded up in his dresser drawers.
     
    Little One discovers my grandpa's harmonicas. Yay. Could be worse; grandpa could have played drums.
    Cat sings along - or is he telling him to stop it? OOPS! He's telling him to stop it.
     
    Big one says, "What do you play if you can't play an instrument? Drums."
     
    Okay, so I actually went to an online match making service last night and filled out a questionnaire. With every group of questions I found myself criticizing the survey: "They just asked me the same thing in slightly different words in the last group of questions! How did I answer that one?" By the time I was done they said I was schizophrenic. Don't tell anybody.
     
    Silver lining turned to lead: It's snowing.
     
    45 minutes later -- It's a whiteout with the most gigantic flakes I have ever seen! How can something so beautiful be so much of a pain?! There'd better be school tomorrow - I'm going to work if I have to harness up the neighborhood dogs and mush into town.
  3. barefut
    SNOW!!!
     
    April 20th and snowing in Western Washington. So much for planting the veggie garden or anything else for that matter. Seems like I was looking forward to this spring more than any other, wanting to get a jump on things around the yard, and it snows at sea level a full month into spring.
     
    I have felt like a puddle all weekend, wanting to do nothing but sleep. But sleeping only makes me sleepier. Can't seem to shake the fog out of my head.
     
    Mom has been here 2 full weeks and my house has never been cleaner. Or more organized. I can't find anything. :blink:
     
    I keep noticing more and more things she's done, like dust under the computer printer and the top of the refrigerator. She also nailed back up the pickets that were knocked off the fence in the last windstorm (or was it by soccer balls?) And the household trash cans seem to empty themselves.
     
    Trying to enjoy it without guilt. During the week mom cooks dinner and then won't let me help clean up. She says, "Sit. You've been on your feet all day." I say, "Ok!"
     
    Don't want to take too much advantage though - I could get too used to being pampered and become spoiled and lazy.
     
    Sleepy, foggy headed, no energy, short attention span and a bit bored today. Just want this day to be over.
  4. 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
  5. barefut
    There is a sweet little lady who lives on a farm.
    She has so many animals, some causing alarm.
     
    Some people say, just how does she do it?
    Some people say, I could never get through it!
     
    But this little lady is a nurturing momma.
    If her husband would let her, she'd add some llamas.
     
    Yes this little lady, though with scleroderma,
    Seizes the day on terra firma.
     
    Even when she's feeling less than spry,
    She'll make her family a berry pie.
     
    She cooks and she cleans and she tears down walls.
    She builds fences while freezing in her overalls.
     
    She keeps the fire burning in the old wood stove.
    She even has her own radio show!
     
    This little lady stands barely 5 feet,
    But as for stature she has most people beat.
     
    Yes, this little lady is not to be messed with.
    You give her a "look" and an ear full you're 'blessed' with.
     
    You may not think this story is true.
    But it is, just as sure as the sky is blue.
     
    This tough little lady is so funny and sweet.
    She is someone that everyone wants to meet.
  6. barefut
    Weeds, disease and garden pests - AGH! I can't keep up with it! Watering my "gardens" (weed patches) tonight (a little late) I couldn't believe how fast and how many weeds popped up since I was in the garden last. How long ago was it? Seems like only last week but may well have been 2 or even 3 weeks ago - I don't know. All I know is I obviously can't keep up with it.
     
    I have often wondered why I even keep the rosebush by the front door, which every year becomes ridden with disease and pests. Tonight it came to me that, that's why. It's a sacrificial rosebush, meant to be dinner for garden pests so that my other plants may live.
     
    Kinda sad really but I hate using chemicals in my gardens. So my pathetic little martyr of a rosebush does its best every year until disease takes it over and I prune it to the ground. Now each spring it comes back with more and more buds than the year before, as if trying to prove something. You have to admire that.
  7. barefut
    Bla Bla Bla..........
     
    That's about the best I can do right now - unless you want to hear about my adventures in hair removal - but I threw away my notes so you're out of luck.
    Incidentally, most of my cosmetic trials and tribulations have to do with hair. Lack of it here... too much of it there....
     
    Unfortunately, I inherited my grandfather's eyebrows. I remember my grandmother trimming his brows when she cut his hair. She would comb them out from his face and snip off about an inch and a half.
     
    It's bad enough to be a woman and have brows thick, dark and bushy but do they have to also grow together? Forget tweezing - I need to use a hedge trimmer! People try to make me feel better by saying, "Oh, no you have great eyebrows - that's the style" I didn't know wearing a wild animal on your face was in style.
     
    I've never been one to start the trendy fads, nor have I been one to follow them. Where am I going with this? I don't know!
     
    I titled this blog before I even started writing it. The well has been dry for weeks it seems. I had no idea what I was going to write when I sat down but I wanted to squeeze something out - anything - in the desperate hope that it might actually trigger an interesting thought and turn into something worth reading.
     
    Writer's block is aptly named, though sometimes I think it feels more like a clog than a block. But "writer's clog" doesn't sound near as sophisticated.
     
    Sometimes I feel as though I am ready to burst with artistic creativity. But I can't paint. Or draw. Or do anything else artistic. So there I sit, creatively constipated with no outlet.
     
    Punctuation seems to be a problem for me at times too as you may well have noticed. I tend to write like I talk and there is no punctuation for that. Using lots of ........dots .........and - dashes - for........dramatic pauses or........to lead you......somewhere....... Seems to be my forte.
     
    What I remember from high school English class about writing:
     
    1. Never start a sentence with "And" or "But"
    2. Never end a sentence with a preposition - or was it a proposition?
    3. Run-on sentences are bad
    4. Two words do not make a sentence (Wanna bet?)
    5. Slang is generally frowned upon (Wanna bet?)
     
    Rules are made to be broken and when it comes to writing, I've probably broken them all.
     
    G'night
  8. barefut
    We attempted a day at the Lake yesterday but got rained out 1/2 way there so we went school shopping with grandpa's gift money instead. On the way home we were stopped on the highway for nearly 2 hours due to a terrible multi car accident. We counted 6 aid cars passing us to get to the scene. I was sick in my stomach. Had I not stopped to rummage for empty boxes on our way out of the warehouse store, we could have been part of that accident.
     
    Driving by the wreckage, the worst of the cars was unrecognizable. My stomach churned. If anyone survived that, it would be unbelievable. I couldn't help but to imagine what the victims and their families were feeling. One minute they are on their way to somewhere, with a plan for the day and the next minute their whole life is changed.
     
    How would I handle it? What would I do? In my imagination, I never handle it well. Don't ask me why I let myself think things like that. Maybe to prepare myself should anything terrible ever really happen to me or my family. Or maybe I'm just warped.
     
    It was a wake up call for all. Pay attention when driving! We've been driving for so long and so often, it becomes mundane, like brushing our teeth. We let our minds wander and even our eyes wander and it only takes a split second to kill or be killed in an automobile. I know I will lose some of my bad driving habits after seeing that wreck.
     
    I didn't intend for this blog to sound like a public service announcement. Just want you all to be careful out there and don't forget that what you are driving can kill in an instant.
     
    PS
    The newspaper this morning said there were no fatalities in the accident - thank goodness!
  9. 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.
  10. barefut
    Two sick kids again. ARGH! Can we ever get healthy? This past weekend Big One complained of a sore throat, headache, stiff neck, aching back, had a temp of 102.5 and was hunched over a bowl in anticipation of vomiting. Somewhere in the far reaches of my memory, those particular symptoms rang a bell. Something I read.....meningitis? A quick web search said yep, get him to the doctor. A visit to the Express Care at the hospital confirmed strep throat. Antibiotics on the menu and I am to keep a close eye on him for the M word. Thankfully, he feels much better today. Luckily Little One's earache is not an infection and is probably just allergy related. The pollen is really bad right now and his poor little eyes and nose are driving him crazy.
     
    So, off to school they go Monday morning. 2:00pm I get a call from school, Little One has a tummy ache and has been sleeping in the nurse's office. I have missed so much work due to our illnesses, I have gotten a verbal warning. I called my precious friend/babysitter/neighbor who is battling some serious health issues of her own and isn't even supposed to be around any kind of possible infection. The school nurse said he didn't have a fever. My friend agreed to pick him up for me and take him home with her.
     
    She tucked him in with blankies, gingerale and movies and he again fell asleep. About 45 minutes before I was able to pick him up, he woke up with a fever and vomited. Poor kid. My poor friend, too! Now I am sick with worry about her catching this 'whatever it is' bug. Little Ones bounce back. An infection could be life threatening for my friend. Now I will keep an eye on her too. Well, thankfully I was scheduled for my day off tomorrow so I can stay home and play nurse and hope I don't get this latest crud.
     
    I have had one day off in the last 12. Yea, 2 of those were Saturdays and I was off at 1:30 but nevertheless, it wasn't a day off. Then I totally forgot the 8:00am staff meeting this morning! I have never forgotten a meeting! I am always the first one there! I may joke but I am seriously worried about my memory. I know employee evaluations are coming up soon, so I couldn't have better timing to start messing up at work. I am lucky to have a job.
     
    Oh and my clothes washing machine broke. I have been anticipating that one. I wish it could have waited for me to have some clean clothes in the house. Nope. Everything we own is dirty. Now I get to spend $3.00/load at the laundromat, one load at a time, on my lunch hours. My refrigerator is next to go. Instead of getting to spend my tax return on a hot tub, or invest it or save it, I will be buying new appliances with it. Joy. But, I am grateful to have a tax return.
     
    Some good news! When I got home from work today, another of my precious neighbors had mowed my lawn! Front, back and side. I can't tell you what a relief it was to see it all done. He also pulled some weeds in my front flower weed beds. I am blessed to have such great neighbors.
  11. barefut
    Over, short, over, short, over, short.........I think I can make a case for disability since I haven't been able to balance for more than 3 days in a row at work. It is so frustrating! Like bowling - if I can get a strike once, then why shouldn't I be able to get a strike every time?
     
    Consistency. That's my problem. I don't have any. About the only thing I am consistent at, is being inconsistent.
     
    If I was consistent I would be thin and firm and fit. I would have perfectly behaved children, my house and yard and vehicle would be immaculate and my grandma would be as pleased punch to have at least one letter a month from me like I vowed that I would write to her when I was 10.
     
    But it's really more than that. Why am I inconsistent? Answer: Too many variables. What are the variables?
     
    Well, let me list some just off the top of my head:
     
    1. Amount of sleep
    2. Weather
    3. Amount of nourishment
    4. Medications
    5. Degree of hydration
    6. People messing with me
    7. Amount of energy
    8. Degree of overall pain
    9. Type of hair day
    10. Time left until perimenopause
    11. People messing with me
    12. Grams of chocolate ingested
     
    How pathetic. Listing variables as to why I am inconsistent (and therefore coming off as a flake) sounds like a blame game. I really only have myself to blame except when it comes to the weather - or people messing with me. I don't like people messing with me.
     
    I guess perimenopause isn't my fault either. Or my bad haircut since I didn't do it (this time). BUT the amount of sleep I get is my responsibility and something I can control; so I suppose I'd better hit the proverbial hay and try to make tomorrow a better day.
     
    It's all about BALANCE!
  12. barefut
    You know the weather is bad when chickens fly, because even though they have been equipped with wings and feathers, they were just not built for flying.
     
    I SO love reading about Barb's life on the farm. I wish she would get more animals so I could hear more stories. But I guess that's kind of mean since they are so much work and the last thing I would wish upon Barbs is more work.
     
    I thought we had it bad weather-wise up here in the "Great Northwest" or as I call it, the Great North Wet. I live in Northwest Washington USA and sometimes it feels like it will never dry out. Some of us have adapted with webbed feet; some of us just have moss between our toes. But it sounds like Barbs has it much worse off in her neck of the woods.
     
    March has so far been windy and wet as usual. By April I will give my right arm for a ray of sunshine. The most depressing days though are the ones where the fog never lifts all day.
     
    Weather can have a profound effect on our moods not to mention our physical well being as I'm sure most of you have experienced. Makes me wonder too, how much of my physical woes are weather/mood related. I know when the sun does finally shine down on me, I am elated and I feel like I can tackle the world. I usually don't know what to do first and run around like a chicken with its head cut off trying to tackle all my yard chores at once.
     
    Then there's the sunny days where I just don't want to do anything but sit on the beach, listen to the waves and watch the kids play. I think I'll leave you with that warm thought for now.
  13. 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.
  14. 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!
  15. barefut
    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.
  16. barefut
    Life's too short not to get in the game
    To sit on the sidelines is a cryin' shame
     
    But pay attention or pay the price
    You don't want to make the same mistakes twice
     
    Take it from me because this I know
    Life's too short not to go with the flow
     
    Listen to signals all around you
    Soon you'll wonder how fulfillment found you
     
    Life's too short not to take a leap
    You never know what joy you'll reap
  17. barefut
    Well, back to work tomorrow or actually today as I have to catch up on laundry, grocery shopping, and housecleaning that fell by the wayside while dad, sis and brother-in-law were here.
     
    Wednesday, dad and brother-in-law got the dog kennel fence and gate put up. What a relief, now my vegetable garden is safe from digging paws and the kids' toys safe from chewing teeth. That's right, I said vegetable garden! It's finally planted! Sis and I also planted the pumpkin patch and sweet corn. We had an early BBQ dinner and then we all went to watch Big One's All Star baseball practice. After practice we loaded up Betsy and went to the drive in.
     
    The next morning, we all met at the farm to work on the fence and do some planting. The weather cooperated beautifully - not too hot , not too cold and with sun breaks! The men and sis made good headway on the fence while I made good headway on my tan. I feel kind of useless out there as far as physical laboring goes. So I make it my job to make the laborers comfy by providing water breaks and lawn chairs and blankets for lounging on. I am also the 'gofer' -- I go for the sandwiches at the deli and bring them back for a picnic lunch.
     
    The boys and the dog had fun playing in the tall grass at the end of the field and we all played baseball in the mowed end of the field while a bald eagle soared overhead, hunting chickens at the neighbor's farm (and yes, caught one).
     
    I got to take a long walk alone, just me and my camera. Something I haven't done in well over 10 years. The farm has 11 acres of trails full of wildflowers and wildlife. It was so peaceful and relaxing to be able to enjoy that solitude.
     
    Three blissful days of perfect weather out on the farm - the frontage fence is done and the farm gate in place, as well as an antique potato harvester we found buried in the brush on the back side of the property. It makes great 'yard art' at the entrance to the farm. This fall the barn will be built. I am as excited as if it were my own place. It's starting to feel more and more real that my sister, BIL and dad will soon be living out here close to me and the boys.
     
    It was a wonderful, peaceful, relaxing, vacation. Now back to the laundry.
  18. 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?
  19. barefut
    Barb you make me feel like a slacker. If our blogs were books, yours would be thick as the dictionary and mine as thin as a comic book. Since I started blogging, yours out number mine 5 or 6 to 1. I can't even keep up reading your blogs. With all that you do, how do you keep up with writing them?!
     
    Mom's endless energy and motivation is also making me feel like a slacker. I SO want to go out and help her in the yard. I want to plant my vegetable garden and the pumpkin patch (yea, I haven't done it YET!) but when it comes to doing the enjoyable stuff I have already used up all of my spoons on the necessary stuff - like bathing.
     
    The miserable weather and insane gas prices are the topic of discussion wherever you go in town and with every customer at the bank. "Did you have a good 3 day weekend?" I asked one of my regulars. "Stayed home. Can't afford to go anywhere", was the reply. "Enjoy the sun," I said as he walked out the door into a downpour.
     
    "Good morning," I say as one of my old favorites comes through the door. "It's always a good morning when my feet hit the floor," he says. These old timers always make me smile. One gentleman calls me precious and one calls me kiddo. The one who calls me precious asked me out to lunch. They always make my day.
     
    I had to leave work early three days last week. Once for a doctor appointment and twice because my attempts to hack up a lung left me dizzy and lightheaded - not to mention that every time I coughed I wet my pants a little. <_< (That said, I'm still all for natural childbirth, ladies)
     
    When I left work Thursday afternoon it was raining and cold as usual. My head was heavy and I could barely keep my eyes open. All I could think about was putting on my jammies and curling up in bed with my favorite blankie and pillow and drifting off into hours and hours of blissful deep sleep. And I did! It was better than chocolate.
     
    By the way, I have to brag -- er -- mention that I actually got in and out of my doctor's office, in and out of the lab and in and out of radiology all in under an hour on Monday! 4:20pm Monday appointments rock! I guess you have to have your doctor's office in the same parking lot as the hospital and live in a small town though.
     
    Doc said I was wheezing and he could hear some crackling in my lungs but the x-rays showed nothing. Was put on antibiotics because white cell count was up, just in case. Feeling much better today (Saturday) and actually made it through all of Friday at work. Still trying to hack up the other lung though.
     
    I am enjoying the most delectable, crunchy, chewey, double chocolate, thin, brownie cookie I have ever had the pleasure of chewing and now I am going to guzzle a gallon of milk and then have some popcorn with my butter and salt. (Yea, okay it's that time of the month - sorry if that's too much information for you men. :blink: )
  20. barefut
    I found myself putting on my makeup this morning while sitting on the bathroom throne - a first for me. Can't waste a precious minute when you wake up at 7am and have to get yourself and 2 lollygagging boys in and out of the shower on one tank of hot water, and then get dried, dressed, fluffed, fed and out the door in under 50 minutes.
     
    Getting breakfast and lunches made in the morning is another multi-tasking feat worthy of some kind of award: Get coffee brewing first, put waffles in the toaster. While the coffee is brewing and the waffles are toasting, warm the butter to spreadable in the microwave while you get out the bread, mayo and ham for making lunches. Run and get a towel for little one in the bathroom who is screaming because he's cold. Run back to microwave and clean up puddle of butter. Pour what was left on butter dish onto very, very, crispy, cold, waffles. Throw waffles in the garbage can and start over.
     
    Make sandwiches while second batch of waffles are toasting. Run outside to defrost Betsy Big Rig. Come back in and break up a fight between boys in the bathroom. Help little one find clothes. Finish packing lunches. Help big one find socks. Is my coffee done brewing? Warm another stick of butter. Take cold hard waffles out of toaster and throw them away. Unknot and re tie 4 tennis shoes. Give each kid one of my breakfast drinks and a kiss on the cheek. Race out the door to the bus stop. Wave.
     
    Get in Betsy, buckle up and follow the bus out to the highway. At stop sign, curse for forgetting all about my coffee and for also forgetting to take the garbage out for pick up.
     
    At least I have my makeup on. :D
  21. barefut
    Ever had one of those I want my mommy days? Remember when you were a little kid and everything was unfair and no matter what you did it seemed things only got worse as the day went on until finally there was a straw that broke the camel's back and you just couldn't take it anymore and you cried out loud, "I want my mommy!" because a mommy's job is to make everything all better.
     
    At 42, crying I want my mommy seems kind of pathetic but nevertheless, I want my mommy! I look around at my neglected house and yard and feel so overwhelmed. Just letting one day go by without keeping up on picking up, and doing the dishes is enough to send me into a depression. It's like not being able to pay a bill one month; next month it's going to be double - with interest and late charges! :(
     
    Where am I supposed to find the energy to do it all? I am constantly prioritzing every move I make so as not to be wasting spoons on things that can wait. You should see how thick the dust and cobwebs are on the shelves above my living room windows. Dust and cobwebs are not a priority. I tell people it's an experiment.
     
    Even for those of us who grew up without mommies, or mommies who were less than mothering, I'll bet you can think of someone in your life, a grandmother, aunt, sister or friend who has been there for you on your I want my mommy days even if it was only to listen to you while you unloaded.
     
    I want my mommy to come help me with my house, yard and kids. Oh to come home from work and smell dinner waiting for me....to have this place dusted, to have my garden weeded, to have my little projects completed....all the things my mom likes to do for me and does so well.
     
    Mom is not here yet but she still plans to come and I am finding that I am needing her help more everyday. Admitting that I need help is still hard for me but I guess I just need to get over it. Most healthy single, working moms can't do it all alone so I suppose I need to give myself a break.
  22. barefut
    My 10 year old came to me the other day, stuck his armpit up to my face and said, "Look mom! Pit hair!" It was a hair alright. But it wasn't his. Turns out he was teasing me.
     
    We were watching a funny video show on TV where a goose was attacking people. My son's friend said, "Man, geese are mean!" to which my son replied without batting an eye, "That's how you get goosebumps."
     
    Yes, I have a little comedian in my home. He has been a clown since he was able to walk and talk. He made a name for himself in Playschool when he was only 18 months old. Parents I didn't even know, knew my little clown and I would hear, "Oh, you're Ryan's mom..." and then, "Good luck with that." as they watched him dance on the tables.
     
    I have hours and hours of video that would take days to watch. Some of it worthy of television video show awards. (Hmmm....I could use $10,000) I also have a little journal stashed away with all the funny things he's said and done over the years. It's priceless. So is he. :D
  23. 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.
  24. 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!
  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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