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Blog Entries posted by barefut

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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
  6. 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!
  7. 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.
  8. 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.
  9. 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...
  10. 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.
  11. 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.
  12. 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.