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barefut

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Blog Entries posted by barefut

  1. 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.
  2. barefut
    Hey,Hi! Long time no blog. So, the latest on me is that I have been denied Supplimental Security Income and so have hired an attorney on contingency, to help me with the appeal process. Little did I know, the Department of Social and Health Services has a person designated to do just that. Wish I'd had known - could have saved myself a little money perhaps. But DSHS was pretty slow in letting me know that and I don't have time to dilly dally.
     
    Our Governor cut Temporary Assistance to Needy Families. My benefits went from $562/mo (which used to cover the mortgage with some gas money to spare) to $478/mo. With no child support and no chances of ever getting any, I need an approval and quick!
     
    The Social Security Administration is requiring me to see one of their doctors. My appointment is in 3 days. It's for a mental exam. Piece of cake. I'll have no trouble failing. :wacko:
     
    So how have I been making ends meet in the mean time? Charity. Lots of charity. I don't know what I'd do without Energy Assistance, not to mention the kind and generous support of our local St. Vincent de Paul and Olympic Community Action Programs to help with my water and garbage bills as well as gas and personal hygiene products. I am nearing the end of my annual allotment from these organizations so things are starting to get a little stressful. I am able to fill in any other gaps by providing childcare once in awhile and by selling things I find around the house. Been trying to get rid of some tires for 8+ months!
     
    As far as my health goes, everything has remained pretty status quo with the exception of some increased stiffness in my hips and some new nerve pain - fatigue ruling my life as usual. My next check up with rheumatologist, pulmonologist and pulmonary function tests is in April. I had to reschedule them from this month because I had no money to get there as it is a 2 1/2 hour travel time with crazy high ferry fares not to mention gas and parking.
     
    Well that's about it on me except that it is SUPERBOWL SUNDAY and I have to finish making my BBQ pulled pork and get over to my friend's house for the game! GO PACKERS!!!!
  3. barefut
    The cursor sits blinking in sync with my heartbeat waiting for me to grace the blank white space with words of wisdom, hope, empathy, humor or a share of despair.
     
    But who am I to think I can write? Who am I to think I can change a life?
     
    The cursor mocks me. Dares me. Laughs at me. Yes, who are YOU?
     
    I am just a girl. Just a mom. Just a person. Just swimming.
     
    Breathing, seeing, listening, breathing.
     
    Experiencing, learning, evolving.
     
    Stepping carefully and sometimes not so carefully - sometimes on people's toes - but always learning.
     
    Paying attention, making mistakes, paying my dues, and making progress.
     
    Slow by some people's standards but still progress nonetheless.
     
    Careful not to judge others and yet judging myself by standards set on high.
     
    Who am I to think I can write - change a life with my words, or just make someone think, or laugh, or feel better for just a moment?
     
    The cursor IS my heartbeat. The words are from my heart.
  4. 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.
  5. barefut
    Back in November, after seeing my boys dig through the dirty laundry for the umpteenth time for something to wear to school, I had an epiphany, or a breakdown, whatever you want to call it. I collapsed on the couch in utter defeat, scanned my living room, which looked like a bomb went off in there, and I finally decided that something’s got to give. I have got to start taking better care of myself and my boys and the only way that is going to happen is if I use my Family Medical Leave to reduce my hours to part time.
     
    I was exhausted, sleep deprived, brain dead, in pain and depressed. I was no good to anybody, not myself, not my boys and not my employer. I saw my rheumatologist and she agreed that I needed to slow down, take it easy, and get more rest. I had weaned off prednisone and my muscle pain and inflammation had come back with a vengeance. I needed help getting out of bed, and out of my recliner. Those automatic lift recliners were starting to look pretty good to me. I was actually using a cane at home and wishing I had it at work some days but I would not dare take it out of the house! I couldn’t even stand to hear myself ask my sons to “bring me my cane” so I named it Ilean. Sounded better to say, “Could you bring me Ilean?” or “I need Ilean’s help…”. I even found myself eyeing those fancy walkers…but NO! I would not go there! I am only 44 years old and I will not even consider leaving the house with a cane or any other kind of mobility device. Not yet.
     
    Working part time was helpful but after about a month I ended up taking my FMLA as a total leave of absence. It kind of feels like free falling. I like the ‘free’ part best. I am free to take a nap when I need to, free to make my doctor appointments whenever I want to, free to take a long, hot, uninterrupted bath in the middle of the day or free to stay in my jammies and unshowered all day if I want to.
     
    Also free to feel vertigo half the day and spend the other half the day on the toilet (MY toilet!). Free to be nauseous and unable to get out of my chair, Free to go sleepless at night and be irritable and brain dead all day. Yipee! But I am FREE to do this! I don’t have to go to work feeling like all that.
     
    Yes, free is great! Falling is…..not so much. I’m sure I will wake up from this honeymoon stage and go splat here any day now and I’m sure it won’t be pretty either. Stay tuned for the *splat*!
  6. barefut
    After 4 1/2 years on it, I took my last dose of Cellcept this morning. I started Azathioprine (Imuran) a few months ago and doctor said it's time now to quit the Cellcept since my lungs have remained stable and my skin "looks good". Its nice to be eliminating a med for a change.
     
    The Azathioprine is supposed to be able to do a better job at handling my myositis - or at least that's what the plan is. Hard to tell any difference yet since I am still (again) tapering off of Prednisone and am currently at 3mgs. I started tapering from 5mg and am going down by 1mg a month. I think I may need to taper even slower as I wake up every morning feeling like I've been run over by a bus.
     
    Today my hands are painful, stiff and swollen. My fingers swell up to the point where the skin around my nail folds cracks and bleeds. Amazing how such a tiny thing could hurt so much. The rest of me is in hobble mode and battling some killer fatigue.
     
    In mid August I am having an upper gastrointestinal endoscopy with a possible esophageal stretch done at the same time. Some of my meds have been getting stuck and dissolving in my throat.
     
    I discovered that I am not eligible for SSI due to lack of "work credits". I must have worked at least 5 out of the last 10 years and I have been stay at home mom most of that time, only working or I should say, only having an employer, for the past 2 1/2 years.
     
    I have 4 months left to appeal my long term disability denial from the private insurance company my employer provided. I have an attorney willing to take my case on contingency but they will take 40% of any monthly payments (a minimum of $10,000). My approximate monthly income would be 60% of my gross wages and then 60% of that, leaving me with about $800/mo. I guess its better than a poke in the eye, especially since I am still receiving no child support and most likely never will.
  7. barefut
    05 November 2008
    Posted by barefut
    Okay Barb, do you want to stop making me cry now?
     
    I couldn't agree with you more on all points except for maybe the part about me dealing with parenthood immaculately. I muddle through. Seems I am constantly looking for role models and asking every parent I know, "Do you run into this (or that) - what do you do?" As with Scleroderma, I guess I just don't want to feel all alone in this uncertain adventure called parenthood.
     
    Then there's my two subtypes of being a Parent:
    1. Single Parent
    2. Single Parent with Scleroderma
     
    Yes, we are rare. I would like to bend the ear of other single parents with scleroderma. I don't know of many. Maybe I will put out an all points bulletin in the Sclero Den. I think I need to be relieved of some of my guilt by knowing I am not the only one who ...parents like me. For me, sclero mom equals slacker mom.
  8. barefut
    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
    It’s one thing to not be able to sleep. It's another thing to also not be able to do anything else while you lay awake hour after painful hour counting body parts that ache and burn and cramp and sting.
     
    There can’t be any greater aggravation than being so sleepy and bone tired, exhausted and spent that you aren’t even able to get up and do anything pleasing or productive with all those sleepless hours. And knowing that the reason for your bone tired exhaustion and fatigue comes not from the hard work of being a productive member of society, but rather from an autoimmune disease where your own body has betrayed itself by attacking all that is good and useful and necessary for life.
     
    While my heart screams, “I’m not done!” my body screams, “Yes you are!” And so the battle goes. Day after day after day.
     
    And so I look for meaning in all of this. What am I supposed to do? I am supposed to do something. Because there is a good reason and a higher purpose for everyone and everything on earth, good and bad. There is a silver lining, a lesson to be learned. Even in the wake of the most terrible disasters there is good to be found, if you look for it. And so I look for it. Everyday. I look for it. And I count my blessings and I add to my list of things to be grateful for. Everyday.
     
    And somewhere in there lies hope, sometimes big, sometimes small but it is always there. Hope for a better day, hope for my children who are also affected by their mother’s disease, hope for those who are affected with this disease way worse than I am. Hope for a cure.
  10. barefut
    Well there's no way I can top that Barb! Not that there's a competition or anything - just reminded me of "Dueling Banjos" for a minute there.
     
    I have to say I have never had anyone write about me, let alone write a poem about me! I feel imortalized. I kind of don't want to blog anything new for awhile because the blog page looks so cute with our title poems about each other posted one over the other.
     
    I am glad I was able to brighten your day. You certainly surprised and brightened mine! :D And by the way, you are no "ordinary" lady. You are EXTRAORDINARY!
     
    Keep on writing....
     
    Love you!
    Barefut
  11. 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.
  12. 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!!!
  13. barefut
    I hate people games. If you wanted to torture me, just make me watch any one of the reality TV shows that are so popular these days. What a monumental waste of time and energy and life itself to participate in and perpetuate trivial, foolish, petty, insolent, tattling, back stabbing, behavior which results in everybody's emotional angst. It is scary to me that this has become entertainment. Don't people get enough of this stuff in their own personal everyday lives? Does it make people feel better to see others suffer along too? I start to wonder...
     
    I have always wondered about people. This may be why I was drawn to sociology in college. Sociology is the study of human social behavior. It would serve us all well to study a little human social behavior. Maybe that's what these shows are really all about? Everyone involved is actually part of a sociological experiment. I can see a room full of sociologists placing bets and laughing their heads off behind a 2 way mirror. I am reminded of the two old guys in the balcony criticizing the show during the TV series The Muppet Show. That's me. I think that's what these reality shows need - 2 old guys in the balcony criticizing the show. Now that would be entertaining! Now watch someone steal my idea and make a jillion dollars from it. Remember, you heard it first here folks!
     
    I have never been one to jump on the band wagon no matter what was playing. In fact, I have always kind of enjoyed doing the opposite of the status quo. In high school when everyone else was wearing purple nail polish and mini skirts, I enjoyed wearing my flannel shirts and overalls. My own form of rebellion? Maybe. To this day, I find that I tend to behave in the opposite manner of what is normally expected of someone in a given situation. Examples? Let's see... when someone does something to me that would make most people angry, I laugh. Probably more for reasons of self-preservation in this instance than of rebellion because I have had more than my share of "angry" for one lifetime. In order for me to be able to do this, I have had to train myself to get past the knee-jerk, reactive, emotional response and consider the antagonistic source. How would I do in one of these reality shows? I would probably get beat up for not playing the game right.
  14. barefut
    Well I've been on Azathioprine (Imuran) for at least 2 months and I have noticed a slight improvement in my muscle pain and stiffness, although I am still weaning off of the prednisone (again) only this time more s l o w l y! I am at 4mg as of now.
     
    I enjoy being able to stay at home and take proper care of myself and my boys. I have been eating better, napping and going for short walks. I have even spent some time pulling weeds! I want to start swimming and join a yoga class.
     
    I am receiving Temporary Assistance to Needy Families (cash) which pays the mortgage. And food stamps which feeds us well. I also have assistance with my utilities. Still no child support. I have applied for long term disability insurance through my former employer and, if you read my latest post, feel like I flunked my recent telephone interview with regard to this.
     
    Then my sister reminded me about my trip to Swedish Medical Center last May. I went to the ER with some symptoms of transient ischemic attacks (TIA's) and was sent to Swedish for a neurological work up. I passed. And so then was referred for a sleep study where it was found that I do have sleep apnea but only when sleeping on my back, so not bad enough to have to have a C-Pap (glad!). All of this to figure out why I am having memory and concentration problems. I forgot about this and so did not give the insurance company these medical records. So maybe I'll have a leg to stand on after all? But only one, and only if it's not too late.
     
    Disability income or not, I am hoping to feel good enough this fall to reopen my preschool. I had so much fun with that and I miss those preschoolers a lot! I would hold classes Monday, Wednesday and Fridays from 9am until 1pm and take only 4 - 6 kids. Surely my body would let me do that by this fall?
  15. barefut
    7 years ago yesterday I heard my doctor say "diffuse systemic scleroderma" to me over the phone. It was the same day my friend and neighbor heard his cancer diagnosis. I am thankful beyond words to still be here and call myself a survivor because my friend did not make it. He fought hard for nearly 3 years and left behind a 13 year old son, my son's best friend.
     
    I always take this time of year to reflect back on everything I have been though with this disease and then count my blessings for having been able to come through it. To be able to continue to be mom to my boys is - well there is no greater gift.
     
    And I remember all of those precious fighting spirits that we have lost to scleroderma. All amazing people who suffered more than anyone should have to with any disease. All of whom were always there encouraging others and always seemed to be smiling though they themselves had it so hard. When I think of what they fought through I am ashamed of myself for complaining even one little bit.
     
    It is from them that I draw my strength and perseverance every day. I feel like I owe it to them to take the best possible care of myself and my boys - because I am still here. I am one of the lucky ones. Scleroderma has been kind to me in that it's onset and progression has been slow. I have been blessed with time. Time to learn, and love and laugh. Time to grow spiritually, emotionally and creatively. Time to just be all that I am, warts and all and to share the precious time that I have been given with my boys and my family, friends and community. And for that time I am thankful beyond words.
  16. 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.
  17. barefut
    My Crete is a lake an hour and a half's drive from here. Just got back from 3 blissful sunny days and 2 sleep filled nights in 'my' time share cabin on the lake -- well it's sort of mine, although I have to share it with the rest of the world. Except instead of paying a big chunk of change for ownership or a monthly fee or mortgage, I just reserve it for whenever it's available and only pay for the nights that I stay there. I have a staff that keeps it clean and well maintained so it's all ready for me when it's my turn to stay. National Parks rock!
     
    I feel good. Rejuvenated. Pain free! I could live in that little cabin on the water everyday for the rest of my life and be completely content. I don't need anything else. No TV, no phone, no computer, no cars. I'd even trade in chocolate.
     
    Now it's back to reality. Back to the rest of the summer -- just working. That's it for my vacation. But you can bet that I will be spending as many sunny Sundays up there as I can squeeze in.
  18. 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.
  19. 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.
  20. barefut
    Came home tonight after the season ending baseball jamboree to news that our dear sweet friend is in the hospital fighting another infection and fighting for her life again. She has become part of our family this past year, caring for the boys, playing referee, chauffeur, chef, pet sitter, helping with homework, hurt feelings, little one's dramatic sports 'injuries' and generally being mom when I could not be there.
     
    I am sick with worry and feeling a bit responsible for her condition since my boys have been sick with fevers and croup. I should have not let her near little one after big one was sick. Of course he was carrying the crud, contagious after being around his brother and then got the fever about the same time she started feeling unwell. Oh, I feel so responsible! I spoke to her the day she went into the hospital and she said she was stabilized and felt better and was hoping to come home today. I told her I thought she got sick from my boys. She told me not to worry and said that if she did, she would never enter a grocery store. I felt better for only a second. Now instead of coming home today, her family was called to her side.
     
    My dear, dear, sweet, precious, kind hearted friend, please come home to us. We aren't done spending time with you yet. You must come over and let me cook for you like you cooked for me and the boys. We have to go to the drive in this summer and walk the beach with the dogs. You must let me be there for you like you have been there for us. So, we will see you home soon dear friend because we are not done.
  21. barefut
    Oh where oh where has my little Barb gone?
    Oh where oh where could she be?
     
    With her sharp wit and humor and even poems too
    Oh where oh where could she be...?
     
    Missing you Barbara Lowe! As you can see, we need your poems and stories of life on the farm and in the radio booth. Nobody wants to hear me try to make a rhyme!
     
    Wishing you all the best and hoping all is well with you and yours!
     
    (You can hear Barb on the radio from the UK at www.chorley.fm "The Morning Show with Babs" begins at 9am UK time) ~ Love ya lady!
  22. 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
    Inefficiency
    Lack of common sense
    Oblivious drivers
    Can't find the tape
    Can't find the scissors
    Can't find anything!
    :angry:
     
    Sclero-Peeves:
    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
  23. 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.
  24. 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.
  25. barefut
    Listening to my 7 year old sing in the shower.
     
    A good cup of coffee.
     
    Snuggling on the couch with my boys.
     
    Sunrise.
     
    The sight of my 12 year old and his dog, snuggling and fast asleep on the living room floor.
     
    A clean house.
     
    Cooking, coloring or puzzles with my boys.
     
    My mountains.
     
    Sitting in my recliner at the end of the day and looking at my boys' school work and art work.
     
    Good hair days.
     
    My Lake.
     
    Getting into the car in the morning after I cleaned it the day before.
     
    My boys getting along.
     
    Summer road trips.
     
    My beach.
     
    Family, Friends and Food.
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