Jump to content
Sclero Forums
  • entries
    140
  • comments
    61
  • views
    330,386

About this blog

footprints

Entries in this blog

 

My Scleroderma Diagnosis Story

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

barefut

barefut

 

Helpful Tips for Battling Depression

It seems like chronic illness and depression go hand in hand.  As if we don't have  enough on our plates, chronic pain exacerbates depression and depression exacerbates chronic pain. It's a vicious circle that's hard to get out of.    I was diagnosed with major depression when I was 19 and have been on and off (mostly on) antidepressants most of my life - especially after my systemic sclerosis diagnosis in 2006.    Major depression isn't something we can wish away with 'mind

barefut

barefut

 

Just for Today

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

barefut

barefut

 

June 13, 2018

I awaken and for the 3-4th time, it takes me at least 30 seconds to get my head straight and realize I am not in my room at the home I grew up in.  As the fog lifts from my sluggish brain, my dream comes shooting back to me in bits and pieces - different dream but same place and same theme as always. Maybe I should mention that to my therapist?   Gauging from the light and the weather outside, I guess it's probably 5:23 am.  I look at my phone, it's 5:25. I'm never more than 10 minutes o

barefut

barefut

 

I'm Back - Again - Update on Me.

Hello Scleropeeps,   I've been away from the site for awhile, trying to pretend I have a normal (healthy) life I guess. It worked for a little while. I was feeling pretty good physically, was staying busy, felt like I had a purpose and was able to push through the bad days. These days, not so much.  I've been battling my depression again. It has slapped me down hard this time - harder than I have ever felt it before. Every day is a struggle to get out of bed. BUT I DID manage to get my

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

 

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

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

 

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

 

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

 

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

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

barefut

 

Dreams Can be a Wake-up Call

I just woke up from a dream that I was with a group of about 5 people who were supposed to be working with me as a team trying to save a bunch of precious historic photographs and stone artifacts before the tide came in and destroyed them.   Instead of gathering up the stacks and stacks of photos and putting them into the boxes, one woman kept taking them out of their boxes. Then she ripped one of the boxes and everything went everywhere. Everyone else was just fooling around on the beach, no

barefut

barefut

 

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

 

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?

barefut

barefut

 

Back To School!

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 v

barefut

barefut

 

January 2nd - My Thanksgiving

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 f

barefut

barefut

 

"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

 

What Matters?

Every time I pull into my driveway and see the over grown weeds, the lawn that needs mowing and all the unfinished chores and projects, I wonder what others think when they come over to drop off their kid or to pick up mine. I wonder what my neighbors think. What do strangers think? "Boy, there's a house that needs painting, a yard that needs mowing..."   Then I think, what does it matter? It only matters if it matters to me. I certainly care more about what I think than what others think

barefut

barefut

 

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

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

 

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

barefut

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

 

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

×
×
  • Create New...