Tuesday, September 21, 2010

Happy Anniversary!

Happy 1 Year Anniversary

I can't believe it!

I missed my Sanniversary!

My Scleroderma Anniversary date.

I thought I would be a sap and ponder over all the life lessons I have learned and center myself to see where I am now, compared to when I was diagnosed - all that important "life event" cerebral emotionally stuff we do when important dates come. 

But apparantly I am not as sentimental as I thought - not a sap - not as profound as I thought I was.

I really (no joke) thought that would be a really important and emotional day for me. But the thing is...I think I went to Sam's Club that day!?!

I guess this is a good thing. Perhaps I have accepted my new life more than I have realized. Which for me,  is pretty huge.... 

I am not an accept-er of things without completely understanding them first. I have said this before, nursing school changed me into needing to analyze things until they make sense to me. 

The irony here is...This disease makes NO SENSE at all! HA! The Big S does not play fair, there are no rules, it is always changing, always progressing causing a continuous series of readjustments and life changes.

Just when you thought it was safe to go back into the water - The Big S will pull a presto-chango and the sharks are back.....so I am really proud of myself for forgetting my anniversary date!

As you may have figured out by now, I am a pretty cerebral person and I like to consider myself deep (again - My opinion - I also consider myself good at scrabble, yet I can't spell, so?)

I digress, so I thought that this mile marker would mean a lot to me. And it still may hit me, just not today. And apparantly - not on the 13th either (Ba Da Bum...Ching!)

Well, what can I say. I just remembered. It's been a year since I got the news that changed/is changing my life forever.

I have "The Big S" - but the big S doesn't have me!

It has been a crazy wild ride this past year.....diagnosis, job loss, depression, denial, grieving, hope, acceptance, joy, weight gain, medication changes, major life decisions and now the start of fall again tomorrow.

Life is good.

Last year my holidays sucked really bad (See I got scrooged) but this is my year baby! Mama Griswold is back in action.....bring on the holidays! Tomorrow is the first day of fall, and after that the onslaught of holidays, carnivals, festivals and fun until the new year and I can't wait.

So, I guess I have really changed. I am happy! I am excited and can't wait for the new season to begin. Bring it on!

Well, that's all for now folks. I gotta wash that grey right outta my hair (Salon appt) and then off to the gym (see said weight gain above!)

Have a great Tuesday! Enjoy your day!

Love ~



Today is ~ Peace Day ~

Hmmm - Who knew?

I was looking at my calender while doing bills and realized tomorrow is the First Day of Fall and today is Peace Day.

I don't know about you, but I think that is pretty beautiful.

Peace Day - The Day before Fall begins.

Hmmm. Very Comforting. Like the soft comfy blankets we will soon all be wrapped up in these next coming months.

Peace-Fall. ...... Peace-Ful.

I like it!

It is beautiful. Perhaps coincidence. Perhaps fate? I dunno...

But it made me feel kinda Kumbaya and happy when I saw it , so I thought I'd share.

Peace ~ Love and Joy ~


Sunday, September 19, 2010

Hi Ho Update! Fun with walking......

Hi all !

Update to my post - Hi Ho - It's off to the doc I go.........

Repeat NCV showed a halt or if I want to show off and use my Sclero-Cabulary....a SCA-LT (scleroderma induced screeching halt!).

My legs still sometimes "give out" as do my arms (like in Yoga when we were all silent doing a pose until my arms gave out and you heard a loud BONK vibrate through the yoga room....good times!)

(oh yeah...the BONK was my forehead hitting the ground., good thing I'm hard headed!!!)

Anyway - Now the doc is thinking monthly IVIG injections at home. 8 hrs each for two days through IV - so if y'all have any good must see DVD movies let me know...I'll have about 16 hours to kill pretty soon!!
And if your local and want to join me for hydration and movies...Like Bob Barker always says's......
Come on Down!
Anyway - Actually hopeful about the IVIG - looking forward to see if it does relieve some of the neuropathy and weakness.
What is IVIG: it is essentially (very layman analogy) replacing my immune system temporarily, infusing it with immuno-globulin from donors to flood my own crummy system with un-broken plasma. The results/relief is temporary, as my immune system will catch on and my over-aggressive soldiers will essentially win the battle over the newbie cells again and create autoimmunity - BUT the interim of relief is said to last about a month or more.....so in that time you are supposed to feel pretty good.
I heard from a CIDP friend that you feel crummy after the 2nd day and are kinda ugggg for the third day, but day four you are feeling pretty good. She says it's worth it and she couldn't live or WALK without it!
I'll keep ya posted!

Nice Analogy

This one is short and sweet....

As you may have realized by now, one of my passions is research. I love to research medical issues (specifically the Big S), treatment options, theories, etc...

I am a nurse, although not currently working, and loved the research aspect of my job. I miss it. So now I kind of keep a binder of interesting studies, theories, etc.. to refer back to and as a journal of progress for this disease.

Well during one of my "Sclero-sessions" I came across a blog where the writer was trying to describe to a bunch of children about her disease. Her scleroderma had manifested in her hands causing the common curing and crippling we often see with this disease... although hers was systemic (as is mine) so when the children asked what the disease was doing to her body and how was she sick, she was very profound when she answered.....

"See how my hands are deformed and sick? That is what this disease is doing to my insides and organs"

Wow - What a simple, yet really profound explanation to explain why it is we don't look too sick on the outside, but are sick on the inside.

Anyway - I really liked the description and her bravery in talking about her illness and bringing awareness about the disease and allowing kids to not be afraid to ask about things they do not understand - like disease and deformity.

I guess that's all for now folks.....although I have SO MUCH catching up to do. Been really busy - but I'll tell ya why later.

May your Sunday be filled with love and laughter.

Peace ~


Saturday, September 11, 2010

Back in the Saddle Again.....

Fun on the Trolley - The Girls
Yes I'm back..............

I had a great time. It was wonderful to see my sister, as well as, to see how others live in different neck of the woods. I am always fascinated by cultural and regional traditions and differences.

Little Rock is by far, one of the cleanest (and cutest) big cities I have ever seen. It was a blast.

It was also so fun to laugh with my sister and my friends. We laughed until our sides hurt. Literally!!

I did pretty good as well. I was taking it like a champ and keeping up with the best of them. I definitely felt it and needed some down time on that last full day though, but that was OK with me. I had 3 full days of non-stop fun..for which I feel truly blessed, and if the price to pay is a down of down time....I'm in!!

I most definitely still feel like I am catching up on much needed sleep and rest, which I'm sure is part jet lag and part "getting back in the saddle" out here in Arizona.

This is my 4th day home and I had to get up early for my son's soccer game - so I am really low key today. Pretty burnt out actually. I helped out a friend on Thursday and Friday - and by Friday night my hands were crying. That coupled with the jet lag, and fatigue and I feel about 80 today.

I just don't know if this means my hands are getting worse or changing. I see a huge difference now when I use them more, from about 5 months ago. They seem to always wake up with "Mickey Mouse" hands and they are beginning to itch like nobodies business. Almost like they are being stretched, but alas, are not. No skin hardening yet!! Fingers crossed.

I must say I do feel much better seeing in print that I have only been back for four days with no real "Full Day" of complete down time. Like I have posted before, I am the queen of self blame. I am famous for the "Should of" and "Should Be" - so I have kind of been beating myself up about being so tired since I got home.

Mind you, the entire get away I did not follow my "Neapolitan Plan" (my life in 3 layers plan...) so of course it is OK to be tired. I just tend to self blame...think I am just lazy or I compare myself to my friend. "If she can go home tired from our day out, but then have the energy to go out to dinner with friends or go for a bike ride, then I should too"......so I must be lazy. Working on it. Ohhhh Childhood Catholic Guilt. Oiy!

Well, I better get back to laundry. I have a small mountain to attend to. For those of you who do not know what my Neapolitan Plan is....see the Sclero-Cabulary page!!

Peace, Love and Pics!!

Enjoy ~
My son - Respecting Karate

Me and My girls!!

The Duck Master - The Peabody Hotel
Sissy - Wax on - Wax off

Wednesday, September 1, 2010

I'm a leavin on a jet plane......

Cuz I'm a leave-in on a jet plane.....don't know when I'll be back again....

I wish.. To have a life where you can gallivant around and not know when you'll be home. Hmmm.

But I AM leaving on a plane for Hot Springs, Ark to see my sister and two dear friends.

I am leaving tomorrow, Sept 2nd and will be "back again" on Sept 7th

No blogging. We are going to the lake house to kick back and be silly. Might get the grand tour of Little Rock in case we decide to move closer to family.

So have a great 7 days!!

Hope you all enjoy each moment and every day.

I will post pics and tell you all about it when I return

Much peace and love ~


Flare Bear

Funny how "We" don't notice things but our kids do.

So... if you haven't noticed I have been MIA for a few weeks. This was partly due to "back to school" but also due to a flare up.

Well, I knew I was starting to "not feel well", but I thought it was due to the back to school blues I was having, but unless the blues can cause pain, joint swelling and muscle weakness.. I guess the blues had turned into a flare-up.

Perhaps the stress from back to school may have helped push me over the proverbial edge into the flare depending on what you believe when it comes to autoimmune diseases, but I was in a flare nonetheless.

I didn't even realize it though at the time. I guess sub-consciously I must have known I was having joint pain, and my hands were giving me trouble in the am with pain and swelling -What I like to call "Mickey Mouse Hands" because my hands feel big and puffy like the huge white gloves Mickey wears.  

I guess I knew my energy level start to fall despite being back at the gym and I suppose I must have noticed that the house was no longer getting cleaned : )

But consciously I guess I was just muddling through...keeping on...."Just do"ing it

What I didn't realize was evidently when I start to not feel well and begin to take those ever famous "respites" on the bed between tasks, I must lay and clutch this stuffed bear.

The bear isn't of any significant sentimental value. It's not from my childhood. It's a cute little thing I still throw on my bed because the hubster gave it to me a few years ago while trying to be romantic. I thought it was cute. It reminds me of that day. It's always "just there". Apparently, I he's my go-to guy on bad days.

 I never noticed this though until my son comes in one afternoon and says: "Are you not feeling well, your holding the "flare-bear"

The "Flare-Bear" ? .... To which he replies, "Yeah, every time you start to get a flare you start holding him"

Who knew? Evidently I did not.... What an astute observation from the kiddo. Perhaps I have some sub-conscious Freudian need to be held or taken care of? To go back to a more simple time? Or maybe he's just soft and gushy and feels nice.

I just think it is so funny and even more interesting that I never noticed or made the connection myself, let alone had a name for the thing.

It's pretty cute. I think I will start incorporating it into my Sclero-cabulary along with my other scerlo codes I use. So from now on I will say I had a flare bear day. Like IT!

Anyway, going back to said flare. It wasn't a huge one, but I must admit and fess up that I DID cave and go in for a steroid injection. I was having some difficulty walking and knew I had some muscle inflammation, so I caved.

There goes weight watchers for the next 4 weeks while the ol' steroids are swirling around my system (for those that don't know - Injectable steroids will last 4 weeks systemically).

But on the lighter - brighter note, I began feeling better within the next few days and was mostly back to my old self - and I am happy to add, got over my back to school blues too.

Just an FYI of significance to me.... My 1 year anniversary is Sept 13th. That is the very FIRST day I received my labs showing the retched Centromere Antibodies, so I consider it my anniversary date.

I didn't get my official stamp of approval from the Mayo until November first, but that was after having every know tube possible shoved somewhere and having enough diagnostic radiation to light up a stadium to make sure it was a "sure thing" - Ug.

So September 13th it is!

Another little tid-bit is; I will be leaving to see my sissy in Hot Springs, Ark on the 2nd and won't be back till the 7th so no blog for me. I will hopefully be laughing so hard my belly will hurt and having too much fun to even know what day it is.

I guess that's all for now. No flare bear on the Stacie front today.

Peace and Love ~

Back to School

You know that commercial..."It's the most wonderful time of the year" ...that has the dad and mom dancing through the office supply store because the kids are back to school?

Well that was NOT me.

I was sad. Blue. Melancholy. Whatever you want to call "bummed out beyond belief" is what I was.

This was the first summer in my life that I was able to be a "stay at home mom" (if you will) for my son and I loved every minute of it! (despite the reason I was able to stay at home)

I really enjoyed spending time with the ol' kidlet and now that he is gone I really miss and cherish those silly lazy days of just laying together on the couch watching a movie while avoiding the 110 degree sun outside.

Remember as I have said in the past, I never say "Why me" about this disease.... but I do admit to saying "Why now"

and I also admit to always trying to learn the lesson in everything.....so maybe, just maybe.. The "Why now" was to have the beautiful gift of being able to stay at home with my kiddo while he was still at the age of actually "Liking" to stay home with me?

Just a thought that kind of brings a little peace to me. You never know what life is going to bring or when it's going to "bring it" so I am learning and truly trying to live in the moment and enjoy each one as it passes.

I must say this was one of my best summers ever, despite it being my first summer with this disease.

Pretty soon summer and it's lazy day memories will be a thing of the past with September here already and the holidays following soon behind.

Things will get busy and it will become harder to remember to live in the moment, so I thought I would write myself this little blog to remember.

Hope summer treated you all right too!!

Peace and Love to all ~