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
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
There are stages we go through after diagnosis that go something like this:
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
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
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
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!
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
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
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
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
"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
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
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
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
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
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
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
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
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,
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
bagels and cream cheese
instant breakfast drinks
"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
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
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
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?
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?