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  • barefut

    My Scleroderma Diagnosis Story

    By barefut

    Not long after my first son was born I started having a lot of unexplained muscle pain and fatigue. The year was 1997. Soon, my hair started falling out - by the hand fulls. Not in clumps but overall thinning, at an alarming rate. I went to a dermatologist and he said that since I was nursing it was probably a lack of vitamin K. So I took vitamin K. I was having lower back pain and since I had been diagnosed with a bulging disc from a work related injury when I was 5 months pregnant, I w
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  • barefut

    Just for Today

    By barefut

    I'm tired. So tired. Tired of nausea,  of living in the bathroom,  of pain, of this dreary weather. Tired of being tired. Tired of scleroderma.    Today I gave up. I let scleroderma win. And it felt good. Sometimes I just don't have any fight in me. Some warrior I am. I don't even have the energy to be angry. And you know what? I don't care. At least for today, I don't care.    Sometimes we need a break and we never get one from Scleroderma but at least we can give ourselves
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Happy New Year with Gratitude and Thanks

A Happy New Year to All ~   Six years ago today I learned of my Diffuse Systemic Scleroderma diagnosis. I have come a long way since then thanks to all of the wonderful people I have met here on ISN.   It's been said hundreds, maybe thousands of times by hundreds, maybe thousands of people, what a great place ISN is to find support from the most sincere, kind, compassionate people in the world. Not to mention the best place to find the most abundant, up to date, reliable information on such

barefut

barefut

 

Chronic Illness - Finding Balance

I am grateful for my good days. You know the ones - when body parts seem to be cooperating or at least not giving you too much grief. You are cheerful, productive, grateful and optimistic! You think, okay what am I doing right today? What did I eat yesterday? Can I repeat everything so I can have these good days all the time? Then BAM! You wake up the next morning and wonder how many cars were on the train that ran over you last night. If you can get out of bed, you can barely move and ev

barefut

barefut

 

From my heart

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 n

barefut

barefut

 

Cyber Sclero Sisters Meet!

It is with great pleasure that I am able to tell you that our Sweet Pam is just as Sweet IN PERSON as she is here in the forums!   On Saturday August 20 Pam, her hubby Brian and their little fluff ball Pomeranian arrived in Port Townsend, via their way cool speed boat, to meet me. Little old ME! Yes, there were tears.   I met Pam online when I joined ISN back in 2006. For awhile I was a support specialist alongside her. I have always wanted to meet her and thought it would be possible ‘s

barefut

barefut

 

Head Shrinker

So my oldest son, Braden (13) had never heard the term "head shrinker" before and when he saw the note I wrote myself reminding me of my first appointment with a mental health counselor, he thought I was having plastic surgery.   I have not seen a counselor since my diagnosis 5 1/2 years ago, though I have struggled with depression off and on all my life. Lately, and by lately I mean since I quit working a year and a half ago, I have been struggling with it again.   For those who suffer wit

barefut

barefut

 

The incredible Shrinking Head!

You can tell it's March -- Things flying about the yard, yep! there goes a Chicken, not entirely the direction it was heading but when the wind took hold it ended up right in the middle of the field. Today has got to be compared to a mild hurricane. It almost blew me over and the gust took me up the yard the fastest I'd gone for years!   I was glad to be home and watch stuff through the window. Stuff like twigs, chickens, an old plastic bag and the old gander trying to stand proud and looking

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When My Boys Have Left The Nest

When my boys have left the nest Am I going to miss their mess?   Will I be a sad mom lonely and old Sitting in a clean house missing the mold   The wet towels on the bathroom floor The toothpaste in the sink that makes me roar   Moldy dishes in their window sills Muddy footprints and sticky spills   Dirty socks behind the TV Suckers in the carpet and pee on the seat   Candy wrappers everywhere Bubble gum stuck in their hair   All these things that make me weary When I am old,

barefut

barefut

 

Taste Of Spring

Today is what I call one of the first days of Spring! Glorious sunshine from a big round thing that is quite a stranger to these lands of late. It was a pleasure to come home and enjoy a degree of warmth on my starved skin.   I pulled up to the gate to a welcome party of feathered friends who crowed,squalked and flapped at my arrival and then out of nowhere the Gander came charging down the drive with neck outstretched and hissing! I was just about to kick out my leg when a guy stopped me to a

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Slacker Mom from November 5, 2008

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 sub

barefut

barefut

 

Filling In The Gaps

I'd completely forgotten what it was like to have a whole week away from work -- well if you can call it that! Since taking a voluntary role at the Radio station my life has gone from four walls, well three actually. Did I mention we never did complete the gable end and we still have panoramic views from my stairway? Yes it's true that we survived two of the worst winter's on British record with a hole as big as a tunnel entrance, facing North too I might add! The geese walk in and out, so do th

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Mental Evaluation and SSI

My mental evaluation went very well. I passed where I was supposed to pass and failed where I was supposed to fail. YOU count backwards from 100 by 13's! Then try and remember 4 words she had you repeat 5 questions ago. :emoticon-dont-know:   I followed directions well - folding a piece of paper in 1/2 and placing it on her desk. :woohoo:   In the end they said they will recommend that I get SSI and ASAP! :emoticons-line-dance:   Then same day, I get in the mail another letter from DS

barefut

barefut

 

Update on me

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 Need

barefut

barefut

 

Missing my Blog Buddy

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 Bab

barefut

barefut

 

Another Update on me

Good grief! Long time no blog. Well since that last post, I have quit the Imruan and gone back on the Cellcept. It seems I was having increased pain and fatigue with the switch but now that I have been back on Cellcept, I don't feel much different anyway. :emoticon-bang-head: Also back up to 4mg on the prednisone. Truth be told, I function best at 10 mgs but doctor wants to keep me under 5.   Had my upper endoscopy in August and I swear my gastrointerologist forgot to do the esophageal dilat

barefut

barefut

 

Hope

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

barefut

barefut

 

Update on Me

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 c

barefut

barefut

 

Six Jobs!

Another day at the Radio Station, my these weeks are flying by! It was kind of a hard day today since I got up too quickly this morning, treading on the cat downstairs, then stubbing my toe on the table leg. My hubby was dishing out daily instructions but to be honest it went in one ear and out the next! My daughter emerged from the dark room where no one ever goes, looking somewhat similar to how I felt and the first word from her lips was "Mum can you make me a drink?" The second sentence wen

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Twice The Woman -- Half The Size

Seems so strange finally being here and able to type into the forum. I've been a stranger in these parts for far too long and I've dearly missed having a moan or a titter to those who share a common bond, although Scleroderma has become somewhat of a stranger to me these past months and I guess that's something to be glad about. I no longer have the time to think about what the future holds. My day at the radio station is full of current news and interesting folk passing through. Sound checks,

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Suck It Up!

Wah Wah Wah. Even I get tired of hearing myself complain. Not that that's all I do or anything, just that if there's one thing I am more weary of than my daily ailments, it's hearing myself whine about it. Nobody wants to hear it, and it really does not make me feel better so what's the purpose and the point?   I suppose it's just a bad habit now. Not to mention a knee jerk reaction to any kind of pain: "OWWW my aching legs! OHHH my feet are killing me! OWWW my right shoulder!.....I sound lik

barefut

barefut

 

Complaining

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 eve

barefut

barefut

 

Update on Me

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 receiv

barefut

barefut

 

In The Wilderness

Not sure if this will appear on the blog site but here goes!..... My absence, although caused by personal issues, was not entirely due to my lack of availability, oh no! my ISP saw to that. I've been blocked out since October last year. So here is my rather long and tedious blog that you've probably all been waiting for?   I'll begin with today, Mother's Day in the UK. I was up and fully dressed by 7am. My hubby was off to work and my car was blocking his in the yard. I'd bought daffodils more

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