Saturday, October 23, 2010

Scars (Oh my gawd Becky....)

First off - Not in the best mood today. Not S related at all - Just a mood. One of those days where I'm not feeling all that great about my body. Had some skin break-outs, bad hair day. All that jazz.

So....I  was out exercising, walking....when a couple of teenagers drove by and yelled "You better keep walking with THAT big butt"    (yep, while typing - Song Stuck - I like big butts and I cannot lie...)

Ouch! I almost started to cry. I wanted to yell..."But I was on steroids, you see - I was diagnosed with this disease......."

Damn it!! Why couldn't that song; Beautiful by Christina Aguilara been on my Ipod at that exact moment - I am beautiful, no matter what they say...words can't bring me down. Oddly, I think Ice Ice baby was on at the moment?

That's okay. They are forgiven. Kids don't understand the scars that are left by words. The ripples they make. The depth they can penetrate.

Sadly, I do. I still bear scars from my childhood and beyond. They suck. Which is why I try to always be cognizant of my words. What I say. How I say it. My actions and how they effect people. The ripples I cause.

The irony here is that before "The Incident" I had just gotten up from the bench at which I was looking at my legs. I had gotten bit up by mosquito's the other day, they had a real feast - so I had about 25 bites on my calf's... and I noticed today they no longer itched but had all turned a brown color. So instead of bites, I now have brown patches all over my lower legs.

I realized they match the other scars I have gotten since the Big S. It seems that anything that disturbs my skin, will now cause an aftermath of brown patches on my skin.

I had worn new sandals and got blister burns on the top of my feet a while back. They are still there... amassed in the new brown color that seems to happen to my skin. The old puncture marks from IV - now brown dots. The scab I picked cuz I just couldn't help myself - brown.

I am now starting to think, realize, discern, appreciate - recognize???? This may be a big S thing. That any skin disturbance can cause the brown patchiness.

I am not sure if my hypothesis is correct, but I have read that hyperpigmentation is common with the big S...and morphea will sometimes look brown.

I don't really have any skin involvement at this time. I feel fortunate of this.

What I am starting to feel is the pinky finger in my left hand change. It's from the knuckle down, starting to get hard. It feels funky.... At first I thought it was just knuckle pain.. but there's sumthin happening here - What it is ain't exactly clear!!

It's not really the skin though.....more like the whole damn thing. I guess we will see. Everyday a new adventure.

So now along with age spots, which are new and good times, I now seem to get scars of brown patches. Gettin old and Getting the Big S. It's a party.

Well, I want to work on a blog about Stress and the Big S. There have been a few papers and reports of  a link between autoimmune disease and chronic stress.  I have been researching the connection myself.... and in order to share my thoughts about it, I must give you some background info of my life - which is, at times, some deep stuff - So I forewarn you and I save that blog for another time. When I have a quiet home and time to devote.

For now I leave you with a reminder - Be careful what you say. Words hurt!

If you have the Big S - Be careful what you run into. We scar!

And have "Beautiful" always handy on your Ipod!

Buffalo Springfield - There's Something Happening Here


  1. I turn brown too, the IV sticks etc... I kind of look dry and brown all over anymore. My fingers have been swollen for years and I am noticing changes on the tips now, very dry and cracked. A lot of GI changes too (wondering if related to all the vascular stuff). In addition to reflux, strictures, obstructions there can be lack of blood flow to the gutt causing pain as well. Getting a full workup now. I learn something new everyday with this disease. I hate the name "limited sclerosis" b/c it's far from limited, especially with such a severe vascular component.

  2. Hi Krissy!!

    Hope all is well.

    You do too!! Oh thank you so much for sharing.

    Thought I was on S-blame overload or just crazy.

    I seem to be revisiting my pubescent 13 year acne years because I keep getting break outs, and I even notice it (not to give TMI) on my face after I pick a pimple - what I'm left with is a brown scar... How's that for a deterrant not to pick your face.

    But really, I do. Anytime my skin is disturbed or opened. Blammo - Brown patch.

    Thank you so much for letting me know... I guess the punch line is - It stays that way??

    At least I have validation and know I am not alone (or crazy)so thank you. Bummer you know what I mean, but thank you : -D

    My tips aren't dry or cracked yet. I do have the swelling. But only permanant in two fingers. The rest of both hands will be swollen in am upon rising and will dissipate as the days goes on. They are just hard to get going in the morning and get "stuck" sometimes. Puffy - Like Mickey Mouse hands.

    Do you get ulcers? Do the cracks hurt? Are they like paper cuts?

    The vascular stuff is a bummer. I'm sorry you feel it too. I get raynauds (I think you do too, right?) and with that the tips of my fingers will feel like I ran them through tiny glass slivers all over.

    I think the vascular stuff is so much more prevelant than we appreciate. I think there are a lot of things we may feel or that cause issue when the arteries narrow everywhere and our bodies must compensate. Uggg

    You said it - Limit Scleroderma. What an Oxymoron eh?

    I guess it's like saying - a small massive heart attack.

    HA! Sclero IS an oxymoron since it is always consistently inconsistent - always changing!

    I don't even call it Limited anymore. It belittles the severity of what people feel. I just say, Systemic Sclerosis - Scleroderma.

    Keep me posted on your GI work up. I went through the ringer, so if you get scheduled for a test and want to ask what its like, I promise to be honest with you. Just remember - whatever work-up or testing you have to go through is temporary and you will get through it!!

    I hope it goes well.

    Are you re-evaluating GI issues or just now evaluating due to symptoms?

    Have you done an EGD yet? Yes, please write if you wanna rap about any GI test stuff.

    Please take care!!