barefut

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Blog Entries posted by barefut

  1. barefut
    Ohhhhhhh my goodness will someone please remind me to never, ever even THINK that I can take my two boys, my eldest's friend and the 7 year old I sometimes babysit on a 45 minute car ride to the next town for shopping - even if it is only to pick up the photo prints I ordered and exchange a gift.
     
    It's only 3:30 pm and I've cracked open a beer for lack of any other sedative in the house. I feel like my head has been through a blender and I really don't know HOW we even got home without an accident. "STOP KICKING MY SEAT!" "STOP CALLING ME A LOSER!" "STOP SPITTING ON ME!" "I'M NOT SPITTING ON YOU!" "YES YOU ARE!" "NO I'M NOT!".........You get the idea.
     
    It would seem to me that 15 year olds would understand the cause and effect logic behind poking a sleeping bear. No different, mind you, than throwing a balled up gum wrapper at a 7 year old in the back seat.
     
    Just when we thought he was settled down....
    7 yr. old: "HEEEEEYYYY!!!! WHO THREW THAT AT ME?! THEY'RE THROWING ROCKS AT ME!"
    Two 15 yr. olds: "Shhhhhh! You're too loud! You lose the quiet game! Mom, make him be quiet."
    47 yr old: "You poked him just to hear him roar so enjoy the fruits of your labor."
    7 yr old: "FRUIT?! WHO HAS FRUIT? I WANT SOME FRUIT!"
     
    Don't get me wrong. I LOVE watching that little 7 year old. He is a hoot! Smart, smart, smart and asks A LOT of questions - that's why he's so smart. And he remembers everything you tell him - EVERYTHING! I don't mind answering his endless barrage of questions - most of the time. I told him to never stop asking questions even if a grown up tells him to because that's how you become smart. I regretted that the minute it came out of my mouth and the next second found myself telling him he asks too many questions.
     
    I had to explain the difference between a smart question and a, well, a question that he can answer for himself:
    "Ya know kiddo, sometimes if you just go with the flow and wait and see, a lot of your questions will be answered before you even ask them."
     
    7 yr. old: "What do you mean?"
    Me: "Just wait..."
     
    So my youngest has gone off to his friend's house and the two 15 year olds are outside shooting hoops and "my" little 7 year old just now comes up and gives me an unsolicited hug for no apparent reason.
     
    Awe ♥ I told you I love that kid.
  2. 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?
  3. barefut
    I thought a day at the lake was in order since it was going to be a hot one. So trading in mountains of dirty laundry, dirty dishes and doggie mess for mountains of evergreens, I loaded up 'ol Betsy and headed out to pick up Ryan's friend and we were on our way. Right after we got the mail, finally returned All Star baseball uniforms, stopped at the grocery store for ice and water, and the deli mart for sandwiches. THEN we were on our way. Half-way there, another stop at the discount store for $3 floatie toys and vitamins then it was next stop, THE LAKE!!!
     
    Finally there, all 3 boys took off like rockets towards the water, leaving me in a cloud of dust and juggling dog on a leash, beach bag, towels, life jacket and cooler. It was easily 95 degrees in the shade and I was sweating buckets. At least there was a breeze.......blowing my hair in my face and I didn't see the tree stump and stubbed my big toe, with the ingrown toenail. Yea, "ouch" but that's not what I said.
     
    Okay, so found a nice spot beside the dock where I could put cooler and dog in the shade and keep an eye on the big boys jumping off the end of the dock - if it weren't for the 2 speed boats tied up out there and the dozen or so people camped out with beers in hand. After about a half hour, I spied an empty spot near some wooden lounge chairs and a driftwood log. Sun, shade, close to the parking lot, bathrooms and out of the line of sight of the strange woman who kept staring at me.
     
    Ahhh, all settled - again. "Mom will you blow this up?" "What?!" Oh well, what's another PFT? I huffed and puffed until I saw stars and decided I was going to reap some of the rewards of this floatie if I was doing all the work. Little one donned his life jacket and we launched ourselves out into the crystal clear, sparkling blue water, but not without a bit of squealing on my part as the cold water flowed over my back.
     
    Floating on an air matress on a beautiful lake surrounded by mountains of trees.....this is the life. I could have just fallen asleep out there - if it weren't for the speed boats making wake and my 6 year old splashing me. Well, maybe some other time. What did I expect on the hottest day of summer on the 2nd to last Saturday before school starts when I didn't even get to the lake until after noon - the place to be empty? All those people are just lucky that I share my special spot with them ;)
  4. barefut
    So much going on
    And big stuff too
    Don't know where to begin
    Don't know what to do
     
    Ready for changes
    Something's gotta give
    Walking these edges
    Is no way to live
     
    My head is aching,
    No, splitting in two
    What have I done?
    What can I do?
     
    How can I know
    If my decisions are good?
    How can I make
    Myself understood?
     
    A peek to the future
    Would be so kind
    Is it too much to ask
    For some peace of mind?
  5. barefut
    Long time no blog. Just enjoying my first cup of decaf for the day as the sweat from house cleaning evaporates from my forehead (why do I need a treadmill?).
     
    My new employer held its annual awards dinner lastnight at a fancy golf and country club. I really wanted to go but my body didn't. I even had something to wear and the boys were pawned off on the neighbors for the night. Oh well, there's always next year.
     
    Since the kids spent the night at the neighbors, I got to sleep in until 8:30! :D Even better, I get a peaceful, productive morning before the whole neighborhood of boys shows up at my house as is the usual Sunday routine. So not sure how much blogging time I have this morning. Trying to blog with kids in the house is like trying to....do something futile (not very witty this morning <_< ).
     
    I was noticing how neglected my pantry has become. It's scary. Speaking of scary, I decided to leave the cobwebs up for decoration as October is fast approaching anyway. I'm trying hard to not become overwhelmed. I still have to file my 2007 tax return, finish and file divorce papers, renew a number of assistance applications and get to know what I'm doing at work.
     
    Little boy just burst through the door. I guess a short blog is better than no blog at all (hey now! <_< ) It's football time anyway. GO SEAHAWKS!!! GO PEANUT!!!!
  6. barefut
    I sat in my suburban in the grocery store parking lot, once again not sure if my bowels were going to let me go in and not sure if I wanted to anyway with it blowing rain horizontally. My fingers were already white and on their way to blue, even in my fleece gloves. I turned on the motor and warmed them up with the heater. I wondered how much extra gas I had gone through doing this all the time.
     
    How much did I need the things on my list right now anyway? Could I just come back tomorrow? I was always coming back tomorrow. Talk about going through the gas. I wished that I had a nice, used, economical, little car. I love "Betsy Big Rig" for camping, hauling my kids (and half the neighborhood kids) and all their sports accessories to the BMX track, the park, the pool, the beach, the Rec. Center, the library....but she sure is expensive these days!
     
    Back to my grocery dilemma. My prescription can wait. Coffee filters - totally out, but no biggie; even decaf is starting to mess with me. Bread - gotta have it. Fruit - totally out, need it. Something easy for dinner; there wasn't much in the house to conjure up a dinner with and it would have to be a quick and easy one tonight because the kids' school open houses started at 6pm.
     
    The sharp pains in my gut persisted and so did the wind and rain but I decided to go in. I'd be quick. I hoped I didn't run into anyone I knew in this small town and end up having to engage in endless polite conversation whilst my gut rumbled impatiently.
     
    I moved Betsy Big Rig to an open parking space closest to the door that was designated, "For your convenience, 15 minute parking for coffee customers" (Give me a break!). Then it really started to pour down rain. Was the universe trying to tell me something? If it was, I didn't listen. I pulled on my gloves, threw up my hood and ran into the store.
     
    I was on a mission. My assignment: grocery shopping. My tactics: map out target supplies, commandeer shopping cart, remain covert, get in and out of there fast.
     
    Inside, people must have thought I was in a timed shopping contest by the way I was racing through the store. I saw people see me coming and get out of my way halfway down the aisle (so much for covert). I might as well have had, "Get out of my way!" tattooed on my forehead (and a "Racing my bowels" sign taped to my back).
     
    In the 'end' :rolleyes: everything turned out okay. I got what I needed, didn't see anyone I knew and got home without incident or accident. Mission accomplished.
     
    Now, to get through 2 school open houses...
  7. barefut
    Wow, would you look at that -- I am a blogger. A blogger for the International Scleroderma Network! (International!) My blog even has its very own (witty-ish) title and everything -- I think I might capitalize Blogger.
     
    One might even go so far as to say that, I am a 'writer'. I write; therefore I am a writer. That is bold for me to say. I have always felt inhibited from actually referring to myself as'a writer. That term is reserved for published people who make a living from their work. People who have struggled for years, emotionally and financially, to earn that title. People who have gone to school to learn the finer art of writing and/or who have spent countless hours working to become published in addition to the countless hours of writing and/or agonizing over what to write about.
     
    But tonight, with my glass of red wine warming my sore throat, I am uninhibited enough to say that, "I am a writer." That feels kinda cool. I couldn't pretend to be a writer without the privilege of being a Blogger for the International Scleroderma Network! (International - that's world-wide!) And I couldn't be a Blogger without the blessing of Shelley Ensz and the wisdom and support of my editor and mentor Carrie (Jefa) Maddoux. (That's cool - I have an editor -- I must be a writer!)
     
    Without knowing it, Jefa has taught me a lot about writing and even more about myself. She has given me one of the greatest personal gifts I could ever ask for -- confidence. And without ever having met her in person, I can feel her confidence in me. She has made me think. Hard. About a lot of things. Carrie is on the top of my list of cyberfriends I would really love to meet in person, if only to give her a big hug and say thank you. Thank you for your confidence in me and thank you for giving me confidence in myself.
     
    Thank you, Carrie.
    You will always be in my heart.
  8. 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
  9. barefut
    Well, okay there's nothing (seriously) wrong with my brain and I have the MRI, and vascular studies to prove it now. So why the vertigo, dizziness, sudden extreme sleepiness and memory and concentration problems? And what was up with that throbbing pulsation in my neck and the pricklies in my left arm last Tuesday at work which sent me to a Seattle hospital for more testing all day Wednesday when I really wanted to be at my friend's Celebration of Life service? (How's that for a run-on sentence?)
     
    I may never know the answer to that but at least I know that I'm not a ticking time bomb of embolisms ready to stroke out at any given minute. Whew! I really do have enough on my plate for now, thank you.
     
    So, what was it like to travel to Seattle in an ambulance with no bridge? It was AWESOME! Well okay I exaggerate, but it was as awesome as it could be under the circumstances. I have to thank everyone involved in all the prior planning that it took in order for my transport to go so smoothly. It was like they had been doing it this way for years.
     
    I left my local hospital in style -- lights, sirens and all. We arrived at the passenger water shuttle in no time. I was wheeled past a crowd of onlookers with very serious looks on their faces. I wanted to make them all laugh but my usual witty humor escaped into a thick brain fog. Suddenly very self-conscious, I tried to rearrange the blanket to cover my bare shoulders.
     
    Once on board, I had my own private corner of the boat with a curtain all around and a flat screen TV. I can't say that it was luxurious but I can say that it was as comfortable as it could be under the circumstances. In looking around I noticed all the modifications made to the boat in order to accommodate me. They did a great job.
     
    Thankfully it was smooth sailing and once on the other side, I was the last one off. Another transport was waiting for me there and then we were off to the big ferry. I inquired as to how I was to get back home and the EMT's informed me that there is a free hospital to hospital shuttle service for patients. Cool. I didn't end up using it but nice to know it's there.
     
    I must apologize to friends and family for the scare. And thank them all for being there. The ER doctor didn't want to alarm but had to send me to avoid possible harm. Nothing serious is nice to find and gives me precious peace of mind.
     
    Now I get to schedule a sleep study....
  10. barefut
    Just off work and finding myself again, sitting in Betsy Big Rig in the grocery store parking lot, not wanting to go in. My whole body is buzzing from the activity of the day - or is it from my head cold?
     
    There is a girl getting into her car who could be Epasen's twin.
     
    If I recline my seat I'll be asleep in under 30 seconds for sure and then I'd miss my oldest's baseball game here in town. Mom took Little One to T-ball practice in the opposite direction and Coach is giving Big One a ride to the game since I am already in town. What would I ever do without the help of friends and family? They are adding years to my life for sure.
     
    Need to go on another grocery shopping mission. Fruit, fruit, and fruit! Mom spoils the kids with sweets. I need to fill the house with FRUIT!
     
    My toe hurts. Don't want to walk. Don't want to use electric shopping cart either - stubborn pride. Shouldn't have worn these black leather work shoes. Should have worn my garden clogs again - even if they are neon green! The only way I can get away with that is to wear the sweater that matches them. Then it looks like I did it for fashion. Time to buy a black pair for work - SOON!
     
    Seeing doctor for the ole' toe on Friday. Hoping it's not the big "G". Nah. Probably just a fungal infection - "Just" Ha! Just a fungal infection with scleroderma and Raynaud's isn't just a "just".
     
    Rule of thumb (or should I say rule of toe): If it hurts and it's turning brown, see the doctor!
     
    *sigh*
     
    Better gear up for the battle in the grocery store, baseball game starts soon. That means I have to put my shoe back on.......... :( ouch.
  11. 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?
  12. barefut
    Saturday - I had big plans for the day but I used up all my spoons taking a shower and getting dressed. My boys are using up my knives and forks as I type, fighting with each other and the dog whines at the back door, starved for attention.
     
    I don't suppose I 'll get anything done on my list today and they are things that have to be done - or else...Oh well, I guess I can take solace in the fact that I showered and dressed today. Now I can pour myself on the couch, in my messy house and amongst my piles of things to do and at least look presentable and smell good while I feel bad about everything not getting done and wishing I could sleep the day away.
     
    I'm going to leave you now since I don't even have the energy to type anymore. But I'm going to give you an assignment: Find out what The Spoon Theory is if you don't already know.
  13. barefut
    Good grief! Long time no blog. Well since that last post, I have quit the Imruan and gone back on the Cellcept. It seems I was having increased pain and fatigue with the switch but now that I have been back on Cellcept, I don't feel much different anyway. :emoticon-bang-head:
    Also back up to 4mg on the prednisone. Truth be told, I function best at 10 mgs but doctor wants to keep me under 5.
     
    Had my upper endoscopy in August and I swear my gastrointerologist forgot to do the esophageal dilation. There was no improvement at all! Then I had a tarry stool on Thanksgiving so I thought I should mention it to him (even though it only happened that once). Doc wanted to look again because it could be a sign of an upper GI bleed. And since I had told him that the first dilation did nothing, he did it "again". THIS TIME it made a huge difference. I swear I can even breathe better! I hear some people must have this done yearly. I would say so worth it! Oh and no bleeding - I didn't think so. If there was, it had plenty of time to heal before he got around to lookikng in there.
     
    I made a mistake in my last blog entry. I meant to say that my Social Security Disability was denied due to lack of work credits. So I applied for Supplimental Security Income and was also denied. I have secured an attorney who works on contingency and will only take 25% of the back pay with a cap at $6,000. Worth it to me to let her fight my fight for me.
     
    Another holiday fast approaching and been trying to pace myself and pare down activities but I still feel myself going down for the count. Have not been sleeping well, the restless legs are tap dancing all night. Saw my sleep medicine doctor also this week (getting them all done at once!) She increased the Mirapex and suggested taking it earlier in the evening.
     
    Well, friends I am off to bed! I will try to entertain you more frequently with my lists of woes because I know you all are SO interested! So stay tuned for the exciting adventures of.... the mammogram! :(
  14. barefut
    Ahhhh it was back to school for the kids today after their 2 week holiday break - which felt more like a month! I tell you, I couldn't get them out of the house fast enough this morning (Where IS that bus?!) I was easily irritated and felt like my nerves were fried with the first clink of a spoon this morning. I don't do sudden loud noises very well. If I was a cat you would find me clinging to the ceiling by my claws. I'm not usually that bad in the mornings but alas - it's a wonder how very little sleep will change your personality.
     
    So being as I hardly slept last night, I curled up on the couch with my heating pad the minute the last kid set foot on the bus. Now I am up from a 3 hour nap, feeling as fit and refreshed as a troll run over by a bus and ready to start my day at the crack of noon. As it should be - and guilt free. (Yea good luck with that guilt free part there kiddo.) Although there is a lot for me to do around here I decided to allow my body one do-nothing day. Now if I could just get my mind to follow suit.
     
    Dirty bathrooms, piles of laundry, and moldy window frames are haunting me. Not to mention that giant box of papers I need to dive into, sort out, and figure out, in preparation for the Little League Auction and Spaghetti Dinner in April. It's been 15 years since I worked in Banquets/Conference Services but I have not forgotten what a lot of work it is and how attention to details - and lots of them! - is mandatory. I am worried that my now feeble sclerobrain will fail me - and therefore everyone! AGH! The pressure!
     
    I'm going back to sleep.
  15. 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!
  16. 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....
  17. 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
  18. barefut
    There goes the cork! I feel lousy. No, lousy would feel good. On the lousy scale of 1 - 10, I'm at about a 20. On top of the normal everyday lousy, I have been trying to hack up a lung for 2 weeks all the while trying to keep from peeing my pants with every cough. I also think my head might explode. After staying home with the boys for a week when they had the crud, now I have to continue on to work with my crud. I'm sure my fellow employees appreciate that. Oh, and it's that time of the month. That time of the month always has perfect timing.
     
    As sclerodermians, or fibromyalgians or any kind of chronic pain sufferers, think for a minute about how much constant pain and discomfort we ignore every minute of every day. Once in awhile, in a quiet moment I will close my eyes and take inventory of what hurts and I have to laugh. Because, what a joke! Really. And it's either laugh or cry and crying never really does much good.
     
    And then there are the body parts that, if not actually painful, they just refuse to function. Take my brain for example. As I mentioned before, part of my job as a personal banker is to remember people's names, and use them. Thus the term personal banker. I have a couple of problems with that. First of all, I have to remember a face. Then I have to remember a name and match it to the face. It doesn't do any good to remember names if I'm not using the right name with the right face. If only I could just call everyone sweetie or honey or pumpkin. I think that might be frowned upon in personal banking.
     
    Well, I'll put the cork back in it and spare you my inventory of pain and go for another dose of cold medicine. I have to get ready for work in about 3 hours maybe I can catch a few zzzz's before then.
  19. barefut
    Wow. This sleepless near Seattle thing is getting old. Today will be fun at work - and THE boss will be there all day - quizzing us. Boy I can't wait for the sleep deprivation hangover to start. The thick headed, brain fog and headache, the burning, swollen, bloodshot eyes, bumping into walls and spilling my coffee, the extra loud ringing in my ears, dizziness and nausea, the looking like a ditzy idiot to everyone. Oh! And evaluations are this week too. Yessiree, can't wait for all that fun to begin.
     
    So, anybody have a secret remedy for restless legs? I am about ready to try a sledge hammer. Kidding of course!!! Had a totally sleepless night last week and had to leave work early to go take a nap. It was too dangerous for me to even try to drive home so I tried sleeping in the car but those legs started up again so I went straight to my doctor's office. He didn't want to treat until after my sleep study. He modified the study protocol to include my legs. I have only mentioned my RLS to my rheumatologist once and back then it wasn't so bad. Wonder why it's getting more often and more severe? Sometimes I'll take a pain reliever (PM kind) or two and that helps me to sleep better but then I can't snap out of it the morning. There's got to be a happy solution.
     
    Went online shopping for a new mattress tonight (this morning!) I have an inexpensive memory foam but when I do fall asleep, I wake up with my hips, shoulders and elbows in agony and I can hardly move. I am going to try a 5" topper of good old fashioned foam. I sleep better on my couch (when it wasn't sagging). I have been done with prednisone for over a month. It ought to be something to celebrate. Who feels like celebrating when you can't move? Again, there's got to be a happy solution!
     
    I had my sleep study consult last Friday. The ARNP seems pretty convinced that I have apnea just based on my symptoms. My first slumber party is in a month. I fantasize that a C-pap machine will miraculously solve all my ailments. If it does, I'll buy stock and go on the road selling door to door.
     
    Well, it's time for my 3:45am nap.
  20. barefut
    Mom is moving in with us in February through the summer. She will be a big help with the kids and the house. We are setting her up in our over-sized laundry room which was my preschool craft room.
     
    I just went in and took down the last remnants of anything "preschool". I cried like a baby - still am crying. I miss it so much. I didn't know how much. It's hard to look at anything we did last year. The "All About Me" assignments with the kids' photos, the holiday crafts, the books we read all snuggled up on the couch together.
     
    I miss our circle time songs, our deep conversations at snack and lunch time, the lessons about manners and sharing and recycling and safety. The day the firemen came and brought the fire truck and aid car, field trips to the library and out to ice-cream, show and tell...I miss it all. I especially miss the kids.
     
    I've never been good at accepting that things change. I watched the town I grew up in change from quiet suburb to bustling city. People we care about change and move away. Kids grow up and lose their innocence all too soon. Sooner nowadays than when I grew up. I was still playing with dolls at age 13. Thirteen year olds nowadays are just way too big for their britches (did I really just say that?) - and their britches are way too small for them by the way.
     
    I guess I'm getting old. That, I can accept. I just hate to see things and people I love change or go away. If I could have one wish. I would wish that I could time travel whenever I wanted. I would go back in time and hold my baby boys, and nurse them, and sing them to sleep - the lullaby I made up for them. And I would dance with them in the kitchen, holding them on my hip, sing the "dancing with my baby" song I made up and give them the dip and laugh when they squealed with delight.
     
    But I can only time travel in my mind. So I will blow my nose and wipe my tears and save the memories for a rainy day.
     
    My preschool may be no more but I can put it on my list of things I've always wanted to do - and did.
  21. barefut
    I am grateful for my good days. You know the ones - when body parts seem to be cooperating or at least not giving you too much grief. You are cheerful, productive, grateful and optimistic! You think, okay what am I doing right today? What did I eat yesterday? Can I repeat everything so I can have these good days all the time? Then BAM! You wake up the next morning and wonder how many cars were on the train that ran over you last night. If you can get out of bed, you can barely move and everything hurts. And if the pain and fatigue itself is not bad enough, you are crabby, helpless, bitter and mad. You don't even want to be around yourself so you know you'd better stay away from friends and family. Ironically, this is the exact time when you need friends and family the most.
     
    And so the story goes day in and day out. You never know when you go to 'sleep' at night (and I use the term 'sleep' lightly - pun intended) how you are going to wake up in the morning. Will you be at the top of the roller coaster full of energy and optimism? Or at the bottom of the roller coaster looking up at the hill you must climb? Psychologically this makes a perfect recipe for bipolar disorder. If your physical pain does not drive you crazy the emotional highs and lows surely will.
     
    Subsequently, I find that on my good days I am probably overly cheerful, grateful and optimistic (nobody wants to be around that either) so I tend to think I can conquer the world. Play catch up for all of my down days and solve the world's economic crisis at the same time. Then, you guessed it - crash and burn.
     
    Finding balance is especially hard when dealing with chronic illness. Our highs are higher and our lows are lower than your average healthy person. Pacing ourselves is crucial to finding balance. As well as paying very close attention to our bodies and our moods.
     
    It is recommended and I know a lot of us do keep a health journal. Writing down what we eat, how we feel and what our day consisted of can be a helpful tool in learning how to pace yourself as well as find balance. This doesn't have to be time consuming. It can be as simple as using a calender to assign each day a mood and/or pain marker on a scale of 1 - 10. Keeping a separate food diary where you record what you eat and time of day can also bring insight into what makes us feel better or worse.
     
    Paying close attention to our bodies is especially important. With chronic illness, we tend to ignore so much. It's innate; I think it's a survival mechanism. We don't want to be constantly focusing on every single body part that squeaks but I think we do need to set aside some time in our days to sit still, be quiet, close our eyes and take inventory of what is going on in our bodies. Write it down and then move on. When I have done this and then gone back and read past entries I have been surprised by a lot of what I wrote because I had forgotten about this or that - these being recurring things that are worth mentioning to my doctor.
     
    We also have to give ourselves a break. Not only physical breaks but mental/emotional breaks. First of all NOBODY is perfect even healthy people, so if your house isn't as clean as you'd like it (my hurdle) or you have to give up some things and/or give in to others, tell yourself it's OKAY. Just don't fall into the trap of doing it all the time and becoming truly lazy. We can give ourselves breaks but we also have to know when to get up and PUSH! Think of PUSH as Persevering Under Sorry Health and ask yourself, "Can I PUSH today? Or do I need to lay low?"
     
    One last thing - chronic illness and depression go hand in hand. Be aware of the signs of depression. These include: prolonged sadness, apathy, social isolation, lack of motivation, and a feeling of hopelessness. Please don't be afraid to ask your doctor for help. You deserve to feel better.
     
     
  22. 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!!!!!
  23. barefut
    I didn't think it was possible at this point but I think my mouth is actually getting even smaller. And my face is itching like mad! The cobwebby feelings are back and driving me nuts! Chewing is fatiguing on my jaw. Eating a granola bar is a total workout! Forget about gum. My jaw and neck and shoulders are so tight I have had a tension headache for a week. Sleep? What is sleep?
     
    A spot on my left thumb itched so badly yesterday that I made and popped a blister by rubbing it and I didn't even realize it.
     
    My feet cramp up all the time and after an hour of grocery shopping, my heels feel so tender and bruised I can barely walk.
     
    My right rotator cuff is messed up pretty good and I can't raise my right arm so I can't put on a bra or brush my hair, and brushing my teeth left handed has left a lot to be desired in the oral hygiene department.
     
    So here I am, a small mouthed, itchy faced, sore thumbed, crabby, sleep deprived, hobbling, braless, bedhead with bad breath. I just want to hibernate. :emoticon-bang-head:
  24. barefut
    Well I couldn't do it today. I just could not make it into work. Fatigue and exhaustion won. Haven't been sleeping much all week. Burning flank pain came back too so I saw my urologist on a moment's notice (he's a gem). No blood in urine. doctor says burning pain is nerve related. He asked what's up? I told him just more of the same - and not sleeping. He suggested a sleep aid for a limited time, so I said I'd try it. I'll start it tomorrow.
     
    Hopefully, catching up on some good deep sleep will bring me back to life. I have felt like an absent-minded idiot. In fact, I didn't remember doctor giving me the Rx. I remember seeing him writing it but did not remember taking it from him and putting it in my purse, which is where I found it after I stupidly asked him if he gave it to me. :blink: Imagine if I had gone to work today and tried to handle other people's money! :o
     
    Must go now - in search of REM........zzzzzzzzzzzzzzzzzzzzzz
  25. barefut
    Leave me alone. I can do it. I don't need any help.
     
    (Help me!)
     
    Don't you tell me I can't do it or that I am not doing it or that you think I need help.
     
    I will tell you that I can do it and I am doing it and that I am dong just fine without anyone's help.
     
    (And I will be lying.)
     
    But you can't tell me I need help. I will tell you, when I am ready, that I need help, and with what.
     
    And it will once again kill off a little piece of me. Like a cancer eating away my dignity and having my soul for dessert.