Saturday, October 23, 2010

Blah Blah Blah Blog.........

It feels like there might be something in my teeth???
Blah Blah Blog - Just random stuff.

Bringing back the SNL - "Deep Thoughts" by Sclerodharma

Why and Self blame do not mix:
Why am I breathing so it the sclero?
No, I'm probably just out of shape, deconditioned, fat, gained to much weight - It's just me - my fault.
Why did I gain the weight, the steroids from the sclero?
And the beat goes on........

Losing Friends Sucks:
Getting diagnosed, then realizing your friendships weren't as strong as you thought they were. It sucks and it's lonely. The Big S itself is lonely. There is no safe place with Sclero.

Sclero; Always changing.
Consistently inconsistent.
Limited yet systemic and can affect anything, at anytime, anyway it wants.

This guy really one-upped the Snuggie!!

Flat Stanley:
Some days with Sclero you feel like Flat Stanley
The silhouette is there, just not a whole lot left inside.....


I liked it better when it was "Hammer-Time"
Now I have my cell phone alarm set for "Pill-Time"

Rainbows and Ponies: I just threw the puppies in for good measure. Puppies are cute. Who doesn't love a good puppy pic every once in while. I promise I don't have calenders or sweatshirts..... Just caught a cute moment of Iggy Pup and her stooge (for those of you ex-punk rockers...yep reference to Iggy Pop and the stooges!!)

Whoops I did it again:
I swear, strike 4 and I'm out.......
Everytime I clean my house lately, something happens. 
I think I am going to listen to the gods and get a housekeeper.
So, to ER twice after cleaning my house due to dehydration, then cleaned (big clean) and had a flare up the next day... and this last time, I cleaned for about 3.5 hours, mopped, vacuumed, counters - and the next day I could not use my arm. I mean it might as well have been "Idle Hands" - it was not cooperating. I had to go to the doc (he is a D.O) and have him manipulate my arm... Note to self: Get a maid! 



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


Drugs Suck!
I was thinking about my brother the other day, well I always think about him - so lets say more than usual,  and decided to call him and found the phone was disconnected.

It was just a disposable cricket thing from what I can tell, but it was disconnected nonetheless...

This always causes me to worry. He's been MIA before and without a phone, and always for some reason I worry more.

Not that bad things wont happen if he has a working phone, its just a comfort mechanism my brain allows me.

So again,  it is now,  every time the phone rings late at nite,  I worry that its "The Call"

There is a constant worry around me, that follows like a shadow. I cant reach him so therefore I must worry.

I know, it makes no rational sense at all, hence the reason said idiosyncrasies have led me to possibly pursue AL ANON

I guess it is a program for families and loved ones of addicts/alcoholics.

Ding ding ding.....Yahtzee!  That's me.

For some reason I have been thinking about him more than usual, even before I consciously knew the phone was no longer - perhaps its the Big S and the passing of my 1st Anniversary.

I often wonder if I saw my brother and he was lucid, if I would tell him? I think not. I am not sure he would really understand it anyway OR it may hurt him to the core, which is unnecessary.

My brother, albeit, a homeless meth addict/alcoholic - is a genuinely beautiful person with an amazing heart. Life is just a puzzle for which his piece does not fit. He is a great guy, handsome, charismatic - but with deep wounds and a really horrible disease.

When I think of him, I hurt and I hope.

I hope he is happy, well, eating, loving, laughing.....

I know what my brother is, what he has been and has been capable of for a long time. I have not had the expectations that my other family has had on/of/for him.

I guess because I saw it, so many times first hand. Ever since he was a teenager, it seems that I was his "It". It was my window he crawled through, my number he called, me he asked to save him when he wanted to die.

Sadly - My parents got to see first hand when they moved here to Arizona and my brother came out here too (after he called me for train tickets)

I think my parents have finally grieved for the son they wished they had had, the son that will never be and have accepted the son that he is.

It is a hard grieve for someone who is still alive.

It is painful.

I think to myself, if I should get bad - if my lungs should fail.... would I get to see him before I left?

I also ponder..... what if I were to go first? A life, a gift wasted on alcohol and drugs and one stolen early by a disease not asked for.

I don't blame my brother, I love him so much. I think I bear the burden of knowing him, the true deep him, more than anyone else in our family. Bo and I were a team and Debbie and Bree were a team - that's how it was growing up till I left home......although I left early.

Addiction is a crazy thing. The ripples and waves it causes.

I guess I have always felt that my brother would not live a long life. AS I get older, perhaps that's why I seem to worry more. Our moralities are closer than they used to be.

I mean not to be a pessimist, I just know all that we have been through. All he has been through. I know his liver is sick. I know he has seizures if he does not drink, I know he urinates blood, I know he blacks out... I know it still happens because the ER bills still come to the house - my moms house.

but there is hope. An old friend of my brothers just got clean. He was pretty into drugs too and his last rehab stuck! Good for him.... It is amazing.

Other friends of my brothers got out of the game years ago. Became doctors, lawyers, had kids, got married - went to AA and keep on keeping on. Good for them.

I don't know what is meant to be for my brother (or me for that matter)

I just want so desperately to hope he is happy. In his own way. That his life is a gift he is his way.

Anyway - Someone told me with cricket you can buy more minutes and reconnect the phone, so for now I am holding out hope that will happen

If not, he knows my home number - which I will never let go of, so I am always here if he calls.

For now - AL ANON on Thursday nites at 6:00pm

Kinda scared to go alone... I guess that's part of the disease? Co dependant?

I dunno, I just really think it would be good with the holidays coming up...

I sure do love him though!

Tuesday, October 19, 2010


Hi All ~

Sorry for going MIA there for a while. It's been a pretty crazy past few weeks.

So, I'm sitting in my bed one morning with my kidlet being silly and I go from laying down to sitting up and WHAMMO!

The room is spinning out of control. I mean, I am having a bout of vertigo of all vertigo's

I couldn't move. The onset of dizziness and nausea hit me like an iron skillet. It was horrible.

It was the weirdest thing... just out of the blue. Or was it?

For a while now I have been having this deep ear pain. Not like an ear infection per se', but a deep "want to stick a pencil in your ear and leave it there" pain that hits the bone.

While at the docs a few times I even asked him to look at my ears to see if perhaps I was revisiting my toddler years and had an ear infection. The answer was always - No - and the pain would pass in a few days or a week, so I would move on and forget about it.

I actually had an episode of vertigo last year.. My first ever. A bizarre out of the blue thing that happened, went to the ENT for it who said "It Happens", gave me Valium to get me through it, albeit - by the time I saw him I pretty much was, but kept the RX just in case. A year went by, so I threw that bad boy away and the incident was nothing more than a memory.

Since then I have had bouts of dizziness and nausea (not vertigo - just dizzy. BIG difference) but I always assume it is either sinus issues, allergies or the nausea from my GI issues.

Now I am a girl who knows nausea... when I have GI flares I am popping Zofran like Tic Tacs, but nothing matches the shear proportion of the nausea you feel with vertigo. Pig Suey! It is not fun.

When I was having the vertigo this time I tried to get up and make it to the potty. I swear you'd a thought I was on an episode of storm chasers during gales force winds the way I was hanging on to the wall to make it there.  Damn......That stuff is scary.

The bedroom turns into the "Deadliest Catch" and I'm a greenhorn (pun intended) trying to walk on deck. And even when the acute phase of the vertigo calms down, for rest of the day you feel like you were on a fishing boat all morning and just got off. And for good measure, your tummy joined the party cuz the nausea isn't going anywhere.

Not fun.....

So this time I got smart and went to the ol' doc and told him of my ear pain and bouts of vertigo to which he replied, there is such a thing as Autoimmune Ear Disease that acts a lot like Scleroderma that causes the narrowing of the ear canal which in turn causes pain, dizziness, vertigo and at worst - hearing loss.

Hmmm - Who knew?

He actually said, yes it could be Sclero related. We would have to do CT scan/MRI to see if there are any changes that can be visualized within the ear to explain the pain and symptoms, and if not - AIED is often a diagnosis of exclusion of which - You guessed it - there is no cure. Booya!

Sooooo the Big S decided it wanted a change of scenery and took a vacation up north. Good Times.

We don't know if that's the case or not - but we're looking into it.

The moral of this story is............Don't throw away the Valium. Vertigo sucks!

I will keep you all posted. I have to do my yearly Chest and Abd CT scan this month and I hate subjecting myself to  radiation that may not be necessary, so I am going to wait on the CT of head for now.

Maybe do the MRI since there is no radiation - But This Girl is seriously Claustrophobic, so we will see.

For now... Just keeping an eye (ear?) on things. Don't want to be ear-rational, but if it gets to be too ear-itating and the CT is ear-resistable - I will let you know.

(Yes - sadly I do crack myself up and I am that dorky)

That's all for now!!

Eye Openers (Why openers)

I was having lunch with my Sclero friend the other day when she said "She started new medications for her lungs and hoped she would live another 10 years" if not "She wanted us know she didn't want a funeral - she wanted a party."

What an Eye Opener

My friend is the leader of our Scleroderma Support Group out here in Phoenix. She is my Big S mentor. I called HER when I freaked the F out after hearing my own diagnosis last year, and now she is discussing her end.

She has had "the Big S" for 8 years, this being her 9th year and the year of the onset of severe PAH requiring her to use oxygen.

It happened pretty fast... No shortness of breath and playing racquetball feeling a little out of breath one day and finding her  PAH score had sky-rocketed.

Stories like this perpetuate my "Why" obsession.

Why am I short of breath - Is it the Big S or is it the extra 10 pounds I put on.

Why was my BP elevated at the Walgreen's - Is it the Big S or am I just annoyed my RX isn't ready yet

There is always a WHY about everything now.

Before it was just, "damn,  I have one hell of a headache" - but not now.
Now its... "Did the Big S make it upstairs?"

Ah...The good old days when a cold was just a cold. When an achy knee was just "playing too hard with the kids"

But now my reality, no matter where that reality lies - in the forefront or back recesses of my mind - will always be... Why? Is it the Big S

I wrote a poem once when I was a kid. I don't know WHY (no pun intended) I even remember it.....

Why is the ocean blue?
To match my eyes?
Why is the sky blue?
To match the far off scene of the ocean?
Why is a question that never gets answered...
Why is the ocean blue?

Yep - That was me - A regular Ralph Waldow Emerson

It's funny though, that I remember that silly poem and now I live in this world of WHY's that do in fact never get answered. No Cure? No Cause? Why? We don't know.

Anyway - I read a story about an event called Fashion for a Cause where the creator said it pretty well:

"Living with Scleroderma is a fight that has no ending. Scleroderma doesn’t allow you to win, then share the victory with your loved ones and continue on with your life. The only thing you can do is build a solid platform to stand on and prepare to fight for the rest of your life. It is a battle without an end. "

Well, I am in the battle and I am gonna give it a damn good fight! Even if I don't know WHY!!