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footprints

Entries in this blog

 

Scleropoetry

Telangiectasia are red My fingers are blue This disease feels like Always having the flu   Sometimes I do well Other times I do not It's not just my body My attitude is shot   So when I am angry And I don't give a care I come to this place For my feelings to share   I know I am safe here With my scleropeeps For they understand This awful disease

barefut

barefut

 

Whose Hands Are These?

Hard dry skin that cracks and bleeds Sausage fingers do impede Whose hands are these That so betray me Stiff and clumsy Oh how they fray me And in the cold turn white then blue Not to mention painful too Whose hands are these I don't recognize Fingers swollen twice their size I lay them in my lap to rest Before I put them to another test

barefut

barefut

 

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

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

 

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

barefut

barefut

 

She's Baaaaaaaaaack!

Wow! Been awhile....   What's new with me? A teenage driver (and all the angst associated with it) A new (used) car (and all the angst associated with that). Dating (and you guessed it - more angst)   All angst aside, I have missed this place! I hope everyone is doing as well as can be expected. I am status quo for me :)   Need to do some reading and catching up and then will get back to you all with my usual wit and humor ;)   Spoons to all! XOXO Barefut

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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

 

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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Fending off an Anxiety Attack

Contrary to what I know you all think of me, I don't have it all together. Nope, I'm not the calm, cool, collected supermom with all the answers that I appear to be. ;) But make no mistake! I USED to be! (if only in my mind). :rolleyes: That could be why I suffer from the occasional anxiety attack today. Just talked myself out of a full blown, chest crushing, hyperventalating, finger tingling, arm numbing, dizzying panic attack - well with a little help from my doctor's nurse, bless her he

barefut

barefut

 

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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barefut

 

Humor

"Humor is the sword with which I battle this disease" ~ Barbara Lowe   Whether you are battling a chronic illness or just life itself, humor is the sharpest, most effective weapon we have at our disposal. It's free, easy to use, you don't need a permit or any special training and you can't accidentally kill anyone with it (at least I don't think so). And the best part? You can open carry.   So where can we find this thing called humor? Well besides all of the obvious places like Comedy C

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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

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

 

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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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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barefut

 

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

 

Good Morning!

No need to bother opening the blinds this morning. It's going to be another one of those dreary, cold, winter days in the Pacific Northwest where the fog never lifts all day. There is no distinction between early morning and early evening because the light stays the same dark grey all day. Best to just keep the ugly outside and try and make my inside as cheerful as possible. On goes my happy light and I scoot it extra close and set the timer for the full 45 minutes. Then it's time to don my

barefut

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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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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

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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

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No Food, Sick Kid and Fried Nerves

yogurt bagels and cream cheese eggs toast cereal instant oatmeal bananas strawberries pancake mix sausage instant breakfast drinks coffee orange juice milk hot cocoa   "Most GOOD moms would not let their kids go to school without breakfast or at least would have food in the house!" The honeymoon is over. Pretty amazing how quickly a mom of a teenager can go from feeling hugged to feeling kicked in the gut. That is the list of "No Food" you see there. Pretty obvious that it's

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

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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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Our Precious Kids

My 15 year old son gave me an unsolicited hug this morning then a few minutes later we had this exchange:   He: Do you feel really bad when you don't take your pills? Me: Yes He: Do you feel really bad when you do take your pills? Me; Well some of them do have some bad side effects. He: Like what? Me: Well 2 of them make me dizzy and nauseous but then so does this disease (gastrointestinal involvement) And one of them makes me irritable (we smile at each other)   Me: Why are you asking?

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