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Blog Entries posted by barefut

  1. 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:
  2. barefut
    Yet I never really left. I haven't blogged for awhile not because I haven't had anything to blog about but rather the opposite really. Too, too much stuff. Topics swim around in my head as I go about my blurry days. Some of them get jotted down on little scraps of paper and stuffed into my purse/briefcase/lunchbag/first aid kit/pharmacy, only to get thrown out at the weekly purging.
    If you looked in my waste basket you would find:
    (Just to name a few...)
    Surviving myself
    You know you're lonely when...
    Camp Concussion
    Lost Dog
    Grandpa's girlfriend
    My (imaginary) boyfriend
    "G'pa dawg"
    Football again
    Coaching style or personality defect?
    When did 12 become the new 18?
    Get your own husband
    Sleep Study
    I'm a dork
    My neck
    The Lake
    I'd love to elaborate on just one of these tonight but that muscle relaxer is finally kicking in and although the headache from my twisted neck is subsiding, now I must choose sleep before sleep chooses me.
    Be Healthy Happy Safe and Warm!!!
  3. barefut
    "No one realises, even myself sometimes, how much of an impact a chronic disease can have upon a person." - Barb Lowe
    I was going to blog about what I had been up to this past month but after reading Barb's blog this morning, I have another agenda.
    You said it sister! Sneaky, insidious, scleroderma. I think that should be the official diagnoses - SIS. Barb talked about how she puts on a good show of hiding her visible symptoms. I want to talk about the impact of invisible symptoms. When people don't see anything wrong with you, they can't help but wonder, "What is her problem?" Boy isn't she: a whiner, lazy, helpless, sympathy monger, slob, careless, unproductive, slow learner, stupid, clumsy, forgetful....All things no one wants the reputation of being.
    And so we have a choice. We can give up and pretend not to care what others think about us or we can fight against it, (as well as our pain) and try to prove that we are not these things. That we are "normal", that we can 'compete' with the healthy people and also have a nice yard, a clean house, a sharp mind, motivation, ambition, strength, endurance, and have energy left over to help others.
    My first choice is the latter and when I exhaust myself from pretending I am 'normal' then I choose to pretend not to care. Pretending has apparently become a way of life and therefore it really does feel like living a lie.
  4. barefut
    For six years I had a "probable lupus" diagnosis. I never could get used to the word lupus. I just don't like the way it sounds: Looo Pus. Lew pus. So I just never used it. Then, good news! I found out I didn't have lupus! Bad news. I had diffuse systemic scleroderma. Slcero-what? Sounds yukky and contagious. Ten times worse sounding than lupus. And the diffuse, systemic part didn't sound so great either. You know, the more words they add to your disease, the worse it is.
    My diagnosis came on January 2, 2006. Funny how I remember the exact date like it was the day of some kind of disaster.
    It took me over a year to own scleroderma. I couldn't even say out loud, "I have scleroderma." It sounded so definite and final. I tried it backwards, "Scleroderma has me." The best I could do was, "I have been diagnosed with scleroderma," as if maybe there was a chance that the doctors and lab techs made a mistake. After all, my lupus diagnosis was a mistake.
    There was no mistake. Turns out my lupus diagnosis was just scleroderma in progress. Now how was I going to deal with this? First, educate myself, right? Wrong! Everything I read scared me to......pieces. I felt I was given a death sentence and I could have 3-5, maybe 10 years and there was no way to know.
    Here I was, a stay-at-home mom to my two precious boys; in a bad marriage that I was gearing up to end; and in the process of applying to graduate school to earn my masters in Early Childhood Education. I was optimistic about my future for the first time in almost 10 years. I was ready to begin a new, happy, stress-free life full of promise. Then the rug was yanked out from under me and I landed in a broken heap.
    My mind raced with, "What am I going to do?!" My first concern was for my boys. Who would take care of them? What would their little lives be like without their mommy? What kind of people would they turn out to be without proper moral guidance?
    Then I felt like I had to scramble to get my affairs in order. I had no life insurance. How would I get any now?! Where were my old journals? Was there anything in them I didn't want left behind?
    I threw out my completed financial aid and graduate school applications. How could I possibly think about that now?
    I became hyper-sensitive, superstitious even, to silly, meaningless things. I could no longer watch my favorite hospital show on TV because people were dying. In one episode, a little boy lost his mom. I couldn't bear it.
    Thankfully, I found the International Scleroderma Network Forums and was able to communicate with real people living with various stages, degrees and types of scleroderma and I slowly began to see that, even as serious as diffuse systemic scleroderma is, it is not a death sentence. People were living happy, productive lives in spite of this ugly disease. I learned that there have been great advances in treatments in just the past few years that have given many people new hope.
    I have made many new friends on the ISN message board. I wish that I had come here first in trying to educate myself and maybe I could have saved myself a lot of anxiety and grief. With the knowledge and support of all the wonderful people I have met on the sclero forums, I realized that I was still going to have a new, happy life full of promise (notice I left out stress-free) -- it just wasn't going to be the one I had planned.
  5. barefut
    There are stages we go through after diagnosis that go something like this:
    1. Diagnosis
    2. Shock
    3. Denial
    4. Adjustments
    5. Proactivity
    6. Gratitude
    7. Acceptance
    8. Peace
    At least these are what I have experienced, along with an underlying grief that tends to resurface now and then.
    In my first blog entry I talked about my diagnosis and my shock. When I was done freaking out, I moved in and out of denial for awhile. I figured as long as my symptoms weren't bothering me too much then I could just pretend that scleroderma didn't exist in me.
    And while I was busy in denial, mowing the lawn, weeding the garden, babysitting 5 kids in addition to my own, and generally knocking myself out with housework, laundry, grocery shopping, cooking, and being chauffeur to play dates, sports practices and games, I realized that if I was going to try to keep up at that pace, then I was going to have to ask for help.
    Since I was (and still am) not good at asking for help, I had to let some things go, beginning with my yard. It saddens me since I have always loved gardening and enjoy the feeling of a hard day's work and seeing the before and after. I take pride in my home's landscape. Now I had to watch the weeds grow, let my dream projects go and try to not let it bother me.
    I have not given up on my gardening. I just do what I can, when I can, and try not to stress about what's always left to do. A garden is never reallly "done" anyway. But here is where that grief comes in. I will always long for the days when my body allowed me to do pretty much whatever I wanted. And I still grieve for the loss of what once was.
    I still have a tendency towards denial, or "functional denial" as I like to call it. Sort of a healthy denial if you will, in which I do acknowledge scleroderma; I've taken my doctor's advice on treatment; I have made adjustments in my life to accommodate my limited abilities and I continue to go about my business of living life to its fullest without even thinking about scleroderma for the most part. So, I suppose you could call it acceptance.
    Making adjustments was and is hard. Really hard! When you've always been one to do it yourself as well as for others, it's just not in your vocabulary to ask for help. I still have a hard time asking for help and won't unless it's absolutely necessary.
    Making adjustments has been a real learning experience. I have had to learn to look at a scrappy yardscape and not care (too much). I have had to learn to be able to relax in a messy house. I have had to learn to not feel guilty for feeding my kids instant oatmeal for dinner two nights in a row and for having to dig dirty socks out of the hamper for them to wear because I just couldn't get around to doing the laundry. (Incidentally I solved this problem by buying more socks. Lots and lots of socks!)
    Replacing the word "lazy" with the word "pacing" was helpful. If I was a healthy person, you could call me lazy. Since I have scleroderma, I am pacing myself. Most days I can get up and clean the house for 20 minutes then I need to take a break for 20 minutes. And that's okay. Things take longer to get done and I don't get near as much done as I would like to, or as I used to, but it's just one of those adjustments I've had to make and I accept it gladly in exchange for being able to do it at all.
    I also learned that accepting help was almost as hard as asking for help. It does take a bit of pride swallowing and with my esophageal problems.....well you know.
    After learning more and more about scleroderma and its tag along friends like Raynaud's, interstitial lung disease, the GI business and more, I decided I was going to take a proactive approach to my treatment and care.
    I noticed some loss of range of motion in my hands. I dread losing any function in my hands. So I went to hand therapy as a preventive measure. I learned a lot of great stretching exercises and bought myself a parafin wax bath as well as a small hand massager that helps to keep my joints flexible. I use it on my tight face too and it helps a lot.
    Since getting any kind of outdoor exercise in the cold months is aggravating to my Raynaud's, I bought myself a treadmill with the gift money from my dear ol' dad. Now just finding the discipline to get on it regularly is another story. But hey, it was a proactive move!
    I also finally started making multi-vitamins, probiotics and glucosamine a regular part of my "pharmaceutical food group" as a fellow sclerodermian in my town refers to her handfulls of daily pills.
    Massage is also something I would like to make a regular part of my care but it ain't cheap! Our town has a school of massage and offers student massages 3-4 times/year at a great rate, so I try to hit those.
    It feels good taking charge of my body and my care and treatment. I feel empowered and determined to not let scleroderma rule me but for me to rule scleroderma.
    I have two very active young boys who need me and too much life left to live to let sclero get the best of me.
    Next: Gratitude, Acceptance and Peace
  6. barefut
    It's ironic how I never considered myself lucky until after I was diagnosed with scleroderma. Yep, there's nothing like a devastating, chronic illness to help you put things into perspective.
    I remember coming home from an appointment with my counselor not long after I was diagnosed. I was still in the "shock/freaked out" stage and was fully expecting to not make it another 5 years. I stopped at the grocery store on the way home just as it started to pour down rain. People were jockeying for a parking spot close to the door. I parked as far away from the door as I could and savored every delicious raindrop that fell upon my grateful head as I walked slowly into the store. I was tickled pink to be able to do my own grocery shopping, even in....no, especially in the pouring down rain. For a time, the sun shone brighter, the air smelled fresher, the rain tasted sweeter and the birds sang just for me.
    I have to be honest; I haven't managed to maintain that level of gratitude for the past (almost) 2 years but I do keep finding more things to be grateful for everyday. I find myself saying, "Things could be worse," a lot. That helps to put things into perspective and gratitude falls naturally into place.
    I have found that counting my blessings has made me a better person in many ways. Gratitude makes me a more positive person. Instead of focusing on the negative, or on things I don't have, or wish I had, I see all that I do have and appreciate it more. Being grateful for what I do have helps me to focus on the positive. (I still wish I had a jacuzzi on the patio though, strictly for health reasons of course! ;) )
    I have come to accept scleroderma as a part of my life - a part of my life, not consuming my life. No matter how much more this disease may progress in me, I will never let it consume me or my life. I am more than scleroderma is or could ever do to me. Scleroderma may someday take more of my body but it will never take my spirit. That sounds all good but it's something I could never do without the help of friends and family.
    Since my diagnosis I have slowed down a lot. You can't help it not to stop and smell the roses. So many wonderful little things become big when you pay attention. When you slow down, you can become a better listener, have more patience, see all the things you have to be grateful for and you will become a calmer, more peaceful person in the process.
    In a way, sclero has brought me many blessings that I am grateful for and a lot of them are my friends here at ISN.
  7. barefut
    Okay, yes. I do have some. But the headlight above my forehead that I call my scalp is starting to look like it has its high beam on. In the grand scheme of things I pretend not to care. I mean, it's only hair. But when all other body parts are behaving and not giving me grief, I tend to turn my attention to one of the more frivolous aspects of my appearance, my hair. It's bad enough to be going gray and having to deal with these wiry critters with a mind of their own, but to be going bald too is really adding insult to injury.
    I've never really been vain about the way I look, just insecure. I don't know which is worse. Insecurities are hard to overcome. Vanity is an unhealthy preoccupation with one's own appearance. Nobody wants to be considered vain, either in our own minds or especially to others. Vanity suggests self-centeredness; self-centeredness suggests conceit; conceit suggests snobbery and snobbery suggests, well all kinds of unpleasantries. No matter how you look at it, vanity isn't pretty.
    Since the subject of vanity has come up more than once here in the ISN forums, whether it be regarding telangiectasia (T-spots) or hairloss, I thought I'd give my impressions on the subject with the hope of maybe putting people's minds at ease. Some worry that fretting about the changes scleroderma makes to our appearance is somehow shameful or disrespectful to those with more serious symptoms of scleroderma.
    It is not. It is simply a normal response to an abnormal body. Vanity does not apply here. Nor is it necessary to feel shameful or disrespectful for caring about your appearance. Even those of us with more serious symptoms flaring, care about our appearance. It just isn't a priority when we're feeling bad and/or need to concentrate on getting well. So, if you are feeling well and have the time and inclination to spend on your appearance then that is a good thing! And keep up the good work!
    It's okay to share your insecurities about the changes sclero has made to your body and it is also okay, necessary even, to grieve over the loss of our "prettier" days. Scleroderma involves a lot of grieveing. You have to let yourself feel it to get through it and be able to deal with it. But that's a whole 'nother blog entry.
    My American Heritage Dictionary says, "vain - showing undue preoccupation with or pride in one's own appearance or accomplishments; conceited. Now we have to look at the word "undue - exceeding what is appropriate or normal; excessive."
    Scleroderma itself is not "normal". Therefore an appropriate, normal response to the changes scleroderma makes to our physical appearance is obviously concern over what those changes entail. There is nothing obsessive or excessive about concern.
    I think we can put our anxieties over being vain to rest. We are having to adjust to what scleroderma is doing to our bodies both internally and externally, and that is anxiety provoking enough without worrying if we are being vain, shameful or disrespectful.
    And by the way, relax -- we are not ugly, scleroderma is.
  8. 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...
  9. barefut
    In looking in the mirror today a couple of things came to mind. One, it's going to be a bad hair day again so just forget about it. Two, I want my lips back.
    I had small lips to begin with and when my face started tightening, my upper lip disappeared rather quickly and quietly. It doesn't help to smile because that only makes it fold under as if I have tucked it up into my gum and am trying to show off my teeth. I look like a donkey.
    Then I started wondering what men with scleroderma think when they look in the mirror. Do they even pay as much attention to their face as we women do? Do they even get the T-spots and the hairloss and the face tightening and the small mouth the same as us women? I imagine they do but I have never heard one of them come on the message board and say they thought they looked like a donkey when they smiled.
    I don't know what point I am trying to make, if any. I was just missing my upper lip and wondering if men ever cared about such things.
  10. 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.
  11. barefut
    Here it is, the eve of my 9th day as single working mom and I am up at 11pm baking cupcakes to take to my eldest's class for his birthday tomorrow and organizing arts and crafts supplies to help my youngest make the ornament for his class's tree in the morning. I PROMISED that we'd do it in the morning. My oldest says to my youngest, "Wow, mom never promises anything!"
    It's true. I never make promises because I don't want to have to break them and more often than not I would have had to break them. Everything always depends on how mom feels at the moment. Makes it hard to plan anything too far in advance. "Maybe, we'll see...I'll think about it; It depends...Too early to tell, ask me tomorrow..." - my mantras.
    As I was filling the last cupcake tin with batter, I started wondering if I would be making these from scratch if I was still a stay at home mom. If I was still a stay at home mom, I probably would have had more time to make them, but if I didn't, then I would have had no problem saying, "Wow, I think we're running out of time to make cupcakes; I don't want to be up all night. I think I'll get some store bought ones" And then I would have helped my youngest with his ornament tonight. I wouldn't have had a problem saying that because I wouldn't have had anything to feel guilty about because I would always be there for my kids. Now I can't always be there. So, I do think guilt factors in here somewhere. As well as the fact that I don't want my kids to think that, now that mom is working, they'll have to get the short end of the stick.
    Time has really become an even more precious commodity than before. I have spent every lunch hour so far running errands. I look forward to a day when I can just sit down and read a tabloid with the girls and eat my lunch! And by the time we get home from after school care and basketball practices 3 days a week, it's already past their bedtime! Did we even eat dinner?
    We have 1 day a week that we're home before 6pm. That was tonight and it was crazy with cupcake batter flying and dog underfoot and cartoons blaring and youngest playing football in the living room and oldest sorting candy for the goody bags and me trying to get the dishes washed and the kitchen cleaned up and dinner on, and the phone ringing...oh, to be soaking in a nice hot tub!
    I wouldn't trade a single precious moment of any of it. And now, I need to go to sleep!
    Good night :)
    I still have my name tag on!
  12. barefut
    My dog stinks. I hate that. He stinks up my house. I can't make him go outside on account of his eyes - his big brown "Mommy don't make me go outside" eyes with those eyebrows that go up and make him look even more pathetic. So, my house stinks. I hate that.
    Give him a bath? Yea, right. Me and what army? I just have to $ave up for the groomer.
    OH! Pet peeves don't have to be about your pet? Well then - where do I start?
    Tangled hangers
    Tangled paperclips
    Tangled hair
    Gray hairs
    Lack of hairs
    Lack of common sense
    Oblivious drivers
    Can't find the tape
    Can't find the scissors
    Can't find anything!
    My blood being replaced with concrete
    Waking up feeling like I slept under a bus
    The bitter med getting stuck in my throat and tasting it for the next 2 hours
    Lack of hair
    Clumsy hands
    Cold hands
    Painful hands
    Lack of hair
    Can't find any of my 100 pairs of gloves
    Living in the bathroom days
    Restless legs
    Sleepless nights
    Sleepy daze
    Sleeping on an incline
    Lack of hair
    Feeling like a professional patient
    Small veins
    Did I mention lack of hair?
    Whew! This feels good! :)
    I'll bet there are a lot of sclero-peeves for those who have it a lot worse off than I do. I can't imagine dragging an oxygen tube around the house all day. Or doing your own dialysis at home. Or dealing with a feeding tube. Or having chronic finger ulcers - just to name a few.
    So when I'm done griping about my sclero-peeves, I think of those worse off than me, send them some good vibes and count my blessings.
    Your assignment for the day: list your pet peeves - sclero and otherwise. It's very cleansing. Then don't forget to count your blessings.
    ISN members go to the Sclero Den and share your sclero-peeves under my peeve topic post
  13. 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.
  14. barefut
    Actually, if I was a healthy person, I'd make the space available for free. I loved being pregnant - growing a little life inside of me - it is such a privilege. I wish all women could experience the elation of pregnancy.
    When I hear of women having like their 10th kid, my first thought is, "Is she nuts?!" Two boys was definately enough for me. Then I get a little jealous of all that pregnancy time. I hear some of you saying, "Is she nuts?!" I know, pregnancy isn't so great for everyone; in fact I had my share of complications too but overall the experience was bliss. I wouldn't trade any part of the experience for anything, not even the labor and natural birth.
    My heart aches for women who want to get pregnant but can't. I could never be an egg donor but I would have no problem carrying another couple's baby for them. It would be such an honor and I think the ultimate gift not only for them but for me. Maybe that's selfish of me.
    There has been speculation among the scleroderma research community that pregnancy and/or the childbirth process may be a trigger for scleroderma. (Sorry but you're going to have to look that one up yourself because I'm too terribly tired right now.) My first autoimmune symptoms did come when my first born was 6 months old.
    I was put on this earth to be a mother and even though I could have been a mom through adoption, I still would not trade pregnancy and childbirth to be scleroderma free.
  15. barefut
    I have got to start adding a snack between my 8:30 yogurt and my 12:30 lunch. I am ready to faint with hunger.
    One sip of my cup of noodle soup and I realize that I have GOT to have a sandwich. Not enough time left to go out, so I improvise with what I can find in the employee kitchen. The best I can do is someone's leftover cream cheese and a package of corn chips from the Honor Service Box. Crunchy, chewy; not bad. It'll have to do.
    Half hour left of lunch break. Take a walk or take a nap? Let's see.....sunny, beautiful day......32 degrees.
    Take a nap.
    I laid down on the couch in the conference room with a partially deflated, promotional, mini beach ball for a pillow. It was quiet and I could hear the sound of the waves crashing on the shore just outside the windows. I realized that I hadn't heard that sound in a long time. It was like coming home. I closed my eyes and drifted off into my endless thoughts of things to do until my cell phone alarm woke me with 5 minutes to spare.
    A larger than life picture of Ben Franklin staring at me with judgemental eyes and pursed lips told me it was time to go back to work.
    I have a headache. Note to self - Don't use beach ball for pillow anymore.
  16. barefut
    Running the gamut of emotions is tiring.
    Everything hurts and yet how can I complain?
    Today I chose despair instead of hope,
    Then shame and more despair.
    Everything hurts.
    I am so tired of hurting.
    I am angry.
    It's not fair.
    I dare not ask, "Why me?"
    Why not me?
    I miss my old body,
    The one I took for granted,
    And now it's gone.
    And this mess that I am left with
    Demands compromises
    Every minute of every day.
    I am tired of compromising.
    I am tired of hurting.
    I am tired.
  17. barefut
    I have a shameful secret. Sometimes I want certain others to experience my pain.
    The old "Walk a mile in my shoes" fantasy rears its ugly head. Not for sympathy. Though sympathy is a good thing, in moderation, it sometimes makes me feel uncomfortable - like I'm being a whiner.
    When I'm short on patience with my kids, 9 times out of 10 it's because I'm in pain. Then I find myself wishing they could know how I feel so they would just please cooperate. When I start making mistakes at work, 9 times out of 10 it's because I'm distracted by pain, fatigue and/or just plain brain fog. The only perk scleroderma has besides the free face lift is getting to blame these things on it. So, I will. If I have to put up with scleroderma then I at least deserve the perk of getting to use it as an excuse for my lameness now and then.
    What I'm in the market for is understanding. Not just for me, for everybody. Too many people are too quick to judge others based solely on first impressions, or the way one dresses or one's mood on a given day or even a single comment one makes. There's always a reason for everything. And nobody knows everything. So what gives anyone the right to judge someone else based on so very little knowledge of anything?
    I am reminded of when I was talking with an acquaintance from high school many years after graduation. She said she thought I was stuck up in high school because I never talked to anybody. Truth is, I was shy and easily intimidated. About the farthest thing from "stuck up" as one can get!
    First impressions are usually, in fact I'll say, almost always wrong. Nobody knows what someone is really like until they spend time getting to know them. Just like nobody knows what scleroderma or any other illness is like until they've spent time getting to know it.
    I think it would come in handy (for us) if our doctors and caregivers could experience our pain so that they could know how to better treat us. After all, they have all the knowledge of doctoring and caregiving, the only thing they don't have that would make them true experts is the knowledge of our pain. Without that, isn't it really just a guessing game for them? They have to rely on on our testimony, which must be accurate, so that they can order the right tests and prescribe the right meds. Wouldn't it be great, like in a sci-fi show I saw once, if our doctors could simply lay their hands on us and know all that we are feeling - physically and emotionally - in an instant? Okay, I'm getting out there now...
    Back to my soap box speech on understanding. In a nut shell, people need to give people a break and think twice before judging and labeling and jumping to conclusions. The grumpy person on the other side of the counter may be in constant physical pain. The quiet person may actually be shy, or sad. The angry person may have lost a loved one. Nobody knows anything about anyone until they've spent some time getting to know them and/or walked a mile in their shoes.
  18. barefut
    Spring is in the air and I feel myself getting antsy to make some progress in the yard and flower beds, however; my body groans at the mere mention of it. If I get around to Fall cleanup, it's usually sometime in mid Spring when my hands are less likely to fall off from the cold - yea, it's not called fall just because the leaves are falling off the trees.
    I am ashamed and embarrassed of my landscape. I still have hanging baskets up out front with dead twigs in them from last Spring. The dog has pretty much destroyed what was left of the grass in the back yard that the boys hadn't already destroyed. And my flower beds are actually weed beds.
    *sigh* :(
    I always start out with such high hopes in the Spring - of how things could look around here. I dream of an English cottage garden out front anchored by my white picket fence that my dad and I (mostly dad) put up last summer. I love seeing the before and after of a hard days work and taking pride in my accomplishments, then being able to sit back and enjoy the visual beauty of what my own two hands created.
    *POP!* (that was my bubble bursting) :P
    Back to reality. The only thing my two hands have created lately is deep, painful splits in my fingertips and a lovely, patriotic, display of red, white and blue.
    I hate to say that I can't do this or I can't do that anymore. Maybe I shouldn't resume skiing or river rafting again but I don't want to say that I can't. Same with gardening - though it's a far cry from skiing or rafting - it's also one of those things I love to do and don't want to say I can't anymore. I can and do work in the garden but just not with the results I used to see or would like to see.
    And therefore I grieve a little for a way of life lost. Spring is supposed to be a time of renewed life but every Spring I am reminded again of things I can't do the way I used to do and the way I want to do. While Mother Nature is in her cycle of regeneration, I am reminded of my own degeneration.
    Wow......what depressing thoughts for Spring! I vow to you all that this year is going to be different. I am going to make my project list and make early progress this year. And I'm not going to forget to plant the pumpkin patch again and I am going to get the dog kennel built and get the grass out back growing again if it's the ONLY thing I DO get done this season. And I will keep you posted on my progress even if it's at a snail's pace - dare I mention snails?!
    Wishing you all some Spring time inspiration even if it's fall on your side on the world!
  19. 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.
  20. 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.
  21. barefut
    I used to get so frustrated waking up at 1:30 am every single night (morning!) and not being able to get back to sleep, but now it has just become a new way of life.
    Getting frustrated about it isn't going to help me get back to sleep so I might as well use the precious time to my advantage and do some laundry, balance the checkbook, finish my applications for financial assistance for my medical bills, pick up the house, pay some bills and write a blog.
    The only problem is, I'm still so foggy headed that my clothes are all pink, I'm overdrawn in my checking account, I can't remember where I put any of my assistance forms, I put tinker toys in the refrigerator, I sent the water payment to the power company and I'm boring you all to death with my endless drivel.
    At work I keep trying to give people more money than they are entitled. Thank goodness for the honest man who returned the extra $100 I gave him 2 weeks ago! (for those of you who don't know me, I'm a bank teller) Yesterday I tried to give the same man an extra $20! My boss asked me what's up with that ..."Is he cute or something? Does he have you flustered?"
    I think it's the time of day he always comes - right before closing when I'm pretty well brain fried. Maybe banking isn't such a good idea for me? :blink:
    Well, better go check on my laundry and look for those application forms.....
    I'd say good night but it's 2:35 in the MORNING! So, good DAY! :( :P
  22. 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.
  23. 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
  24. barefut
    I have always wanted a little pygmy goat or two. They are the most precious little things! And now here's Barbs with not one, not two, but five! I can just imagine....it's not hard to with Barb's vivid descriptions. When she told of putting up the sheet metal fencing at 4:30 in the morning in like what.....40 degrees below zero?! My hands went blue! Oh Barbs, what are you doing to yourself?
    I must admit though, I sometimes do it too - carry on - "getting on with it" even when I know I shouldn't. Glutton for punishment I guess? :( Or maybe stubborn pride? <_< Sometimes I don't want to be thought of as lazy or not pulling my weight. Sometimes I still like to pretend I can do it all. Denial is fun to visit now and then. But then I always pay the price. One way or another my body will tell me what an idiot I was and warn me not to do it again - or else. :angry:
    So, dear Barbs, now that you have granted my wish of getting more animals I am looking forward to hearing more stories of life on the farm with those cute little goats but please don't sacrifice your limbs!
    Stay Wa-a-a-a-r-r-r-r-m-m-m-m
  25. 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
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