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Entries in this blog

 

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

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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

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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,

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Family Medical Leave of Absence - Free Fall...Splat!?

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

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Myositis

My seven year old caught me crying over my keyboard while reading the John’s Hopkins website on Myositis. "Mom, it says, ‘medical treatment’, what happened?” I hear his sweet, innocent little voice say. I wipe my tears and tell him, “Nothing happened, it‘s just that my hips and my shoulders and my elbows hurt and I’m just reading about how to make myself feel better“. That seemed to satisfy him. He gave me a hug and went back to his cartoon.   About 50,000 Americans have myositis; apparently e

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My Favorite Things

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 t

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Med Wars

This one gives me temporary pain free mobility and a bit of endurance but also irritability, sleepless nights and weight gain, not to mention silent other evils.   That one helps keep my fingers and toes from falling off but gives me dizziness, nausea and low blood pressure.   This one keeps me from digesting my esophagus but may be the culprit of my irritable bowel.   That one helps keep my body from attacking itself in countless ways but may also be the irritable bowel bandit.   This o

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I Used To...

In spring I used to plant a vegetable garden, and sweet peas and a pumpkin patch.   In summer I used to mow along the road and keep the blackberry bushes at bay and water my grass and flowers.   In fall I used to put away the patio chair cushions and hammock and prune my rose bush and rake the leaves.   In winter I used to feed the birds and watch them from my kitchen window, and decorate for the holiday with colorful lights and bake cookies from scratch.

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A Poem

So much going on And big stuff too Don't know where to begin Don't know what to do   Ready for changes Something's gotta give Walking these edges Is no way to live   My head is aching, No, splitting in two What have I done? What can I do?   How can I know If my decisions are good? How can I make Myself understood?   A peek to the future Would be so kind Is it too much to ask For some peace of mind?

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I'm Back Again!

Home with a sick kid today, fever, vomiting - hope it's not piggy flu!  Just got a call from my boss that they received the revised FMLA paperwork from my rheumatologist supporting my request for reduced work hours.  I never saw a copy of what my doctor wrote but the letter from my employer said 4 - 6 hours a day 5 days/week.  I was told not to come in on Monday until 2:30pm (weird) and I would get my revised work schedule then.   I'm kind of dreading that because I asked for 8:30 - 3:30, and

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I'm Back!

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

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SPOT ON!

"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.

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Can't Sleep Either! Grrr!

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 f

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My Crete

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 r

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