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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

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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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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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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

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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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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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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

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Update on Me

Well Helloooooo My Sclerodermian Peeps! :)   I've got to say that even though I am not blogging much lately, I am still always thinking of my friends here. I've been feeling writer's block. Not sure what anyone wants to listen to from me - ha! Anyway, I figured I'd at least check in and fill you in on what I've been up to lately.   I have put 2 of my passions to good use in a new home business which I launched last October. I am using my nature photography to make greeting cards and my lov

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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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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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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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"Stop Touching Me!"

Ohhhhhhh my goodness will someone please remind me to never, ever even THINK that I can take my two boys, my eldest's friend and the 7 year old I sometimes babysit on a 45 minute car ride to the next town for shopping - even if it is only to pick up the photo prints I ordered and exchange a gift.   It's only 3:30 pm and I've cracked open a beer for lack of any other sedative in the house. I feel like my head has been through a blender and I really don't know HOW we even got home without an ac

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Sports and Kids and Summer and Me

Helloooo Again My Friends!   Well, baseball season ended with my youngest as starting pitcher for the 9 - 10 All Stars. He pitched a no hitter! This proud and shameless momma had to send her best pic to the newspapers ^_^ We beat our rivals in that game 12 - 2. We lost our next 2 games and this ended our season.   My 14 year old ended their season 9 and 2. They didn't have enough players to compete in All Stars as everyone went on vacation.Speaking of vacation.....My youngest didn't want

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Crazy

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

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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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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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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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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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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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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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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

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The Eyeliner Rule

My sister shared with me The Eyeliner Rule. Back when they were in college she and her friend made the rule that, no matter how lazy they were or how bad they felt, they are to never ever go a day without at least applying eyeliner. I must have been letting myself go.   "If you look good you feel good" she said. Well.....okay...? She obviously has never walked a day in my shoes. I could look like Farrah Fawcet and still feel terrible. But I tried The Eyeliner Rule anyway. It took little e

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Diagnosis: Diffuse Systemic Scleroderma

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 o

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Stages

There are stages we go through after diagnosis that go something like this:   1. Diagnosis 2. Shock 3. Denial 4. Adjustments 5. Proactivity 6. Gratitude 7. Acceptance 8. Peace   At least these are what I have experienced, along with an underlying grief that tends to resurface now and then.   In my first blog entry I talked about my diagnosis and my shock. When I was done freaking out, I moved in and out of denial for awhile. I figured as long as my symptoms weren't bothering me too

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