Saturday, August 21, 2010

Coming soon to a blog near you!

Hi there ~

Haven't posted in a while and didn't want anyone to think that I gave up, closed up shop or was in the hospital or anything.

Just a bit busy with the end of summer and the back to school blues!

I have been doing pretty well (hope you are all too!)

Had to go in for a steroid shot at the beginning of the week due to some end of flare residual muscle pain - but other than that, can't complain.

I even lost 3lbs on Weight Watchers! Woot Woot

Anyway - This was just a quick post to say, Hello World - I'm still here.

I have impatient peeps waiting on me downstairs, so I have to say bye for now, but I will log on again soon.

Happy End of August to all!

Peace and Love ~

Stacie

Sunday, August 8, 2010

Raynauds? More like Ray Nots!

The joy of Raynauds.

When I hear the word "Ray" - I think of all things good or beautiful.

A "Ray" of Sunshine. A "Ray" of Hope. Ray Liotta......Most certainly not Raynauds!

Raynauds pretty much sucks. It is like having blue otter pops for fingers and toes. Your digits are constantly cold. If they do warm up and you get stressed or cold, they will turn into barely functioning Popsicles attached to your hand.

Not only are your digits cold, but they hurt too. When my hands are really cold I don't feel pain, I just feel cold and numbness. When the cold wears off a bit is when the pain starts. Almost like when you were little and played in the snow, then went inside and put your hands under hot water to warm them up and you would get those shooting needles in your fingers.

The lingering affects of Raynauds I would describe as feeling like you have slivers of glass in your fingers. Like you ran your fingers through fiberglass and are paying the price for it. It kind of hurts to touch surfaces.

It also makes your hands and fingers feel a bit drugged, like they want to work but can't because they are on something. Everything just takes a little more effort. You want to make a fist a lot and/or massage your fingers to get blood to the tips.

Your hands kind of have a constant ache, like you slapped the wall too hard. Sometimes you get a show of colors like a laser light show at a Pink Floyd concert, but mostly my hands get pale or white or my finger tips turn blue.

I often find myself in this new habit of holding my my four fingers in my hand and squeezing. Then changing hands to do the same with the other. The center console of my car has gloves in it even in the 115 Arizona heat because of the AC, so I am always prepared and packing. (No AZ pun intended)

The tips of your finger feel a tad puffy, sore, ache, feel sensitive and cold.

I'm not sure how else to describe the dreaded Raynauds.... Fiberglass in the tips of otter pop hands is pretty much as good a description as any.

May the warmth be with you.

Peace out!!

Stacie

Raynaud Fingers!  :  )

I actually do love me a Blue Otter Pop!

TMI with a cute little anecdote to compensate

Remember when you were little and your mom would give you desert first if you had a bad day or needed to get a shot? Well I'm using that little trick in this blog. I'm giving you desert first. Cute before Crass if you will....

Cute: I awake this morning around 5:00am to go potty and I notice my son is downstairs, so of course I go downstairs to see why and check on him. I asked him why he was up so early to which he replied... he woke up early to see the sunrise.  WOW! What a beautiful thing. What an amazing reminder to cherish and relish in the little miracles of beauty life brings...from my 11 year old. WOW.

Crass: Okay - Disclaimer and warning - I am going to the TMI-zone. We are talking bowel issues here, so if you want to leave, now is the time to exit, if not..I carry on.

As you may know, The Big S causes many GI issues. Most people think of the esophageal dysmotility when they think GI and Sclero, but it also affects your bowels. Just like in the esophagus, the peristalsis is affected in the bowels.

Scleroderma can cause constipation, diarrhea, malabsorption, diminished peristalsis, and bowel incontinence. You lose a lot of what is called the "reflex function" of the gut. Normally, when you eat there is something called gastro-colic response, which is the urge to move your bowels. Your stomach starts to work, your bowels start to chum and move things through, Wala - Poop! But with the Big S a lot of these reflexes are lost early in the illness.

I'm not sure if that is now happening to me. I have always been a pretty regular person so to speak, but this past year I have been having bouts of constipation lasting 2-4 days followed by periods of diarrhea. If it is not diarrhea, I have periods where I am able to empty my bowels but it causes terrible cramps and a lot of pain. Not pain at the rectum as the stool itself is soft (I know, I told you it was TMI) but pain in the lower abdomen that feels almost like your worst menstrual cramps x 1000 or if you are male, perhaps what it felt like if you slipped of your bike and hit the bar. The type of intense localized pain that makes you want to curl up into the fetal position because you are cramping so intensely.

Also during these periods, when I am emptying my bowels I will become so nauseous and at times need to vomit.  I am like a Koo Koo Clock on crack - sit down potty, walk to sink to vomit, walk back to potty, walk back to sink to vomit. It's horrible. I'm not sure if I am nauseous due to the intensity of the pain, or from the pseudo obstruction the constipation has caused is now moving causing a spasm. Like in labor when the baby drops and you feel like you are going to be sick..same concept perhaps?

I'm not sure, I just know that it sucks.. and during these times, if I am not trying to empty my bowels, I am on the bed in the C-position with cramps till its time to go potty again. This lovely cycle lasts for about 4 hours or so.  Good Times, eh?

Another tid bit for the TMI file is that during those bouts, sessions, periods -whatever we want to call them, my stool becomes green. I have read that this happens with malabsorption or rapid transit of the gut.

I have been fighting some vitamin deficiencies trying to keep my Vit D and Vit B12 levels in the norm. The GI Doc had mentioned malabsorption, but since I am not losing weight, it was dismissed or fell to the wayside while my labs were checked for intrinsic factors (which were normal) so now I am wondering if perhaps the Big S has taken up camp in my colon or small bowel and could be the culprit and perhaps even causing some malabsorption issues. In my head since I theorize everything, it seems plausible as I do have periods where I just feel so weak, which would make sense if I had no real nutrition being absorbed. Hmm. Something to think about I guess.

I did not mention my Koo Koo Clock bouts to the GI doc when I saw him as our discussion was based around my failing vitamin levels at that time. It was discussed that I should have the Ol' Colonoscopy to check my bowels for the Big S, so I guess that's what I will be doing in the near future. I'm a girl who knows how to have a good time!!

I am aware that some people with Sclero will require meds to stimulate the peristalsis, but also read that later in the disorder, the muscle response is lost and the muscle becomes atrophic and fibrotic. Basically - you cannot "drug" the organ into functioning if there is no tissue there to function.

I guess we will see. That is basically what my life has been for the last 3 days since I returned from my overnight. Things are calming down a bit. As I type my cramps are mild and my nausea is in the background, but if I dare go into the water closet, I know there will be hell to pay.

Don't get me wrong. Sometimes things work fine. It is strange. It makes me wonder if it is linked to the inflammatory process of this disease. If it is a GI flare? I have had lung flares? I never knew or realized that you could have a single organ flare with this disease, but perhaps you can. I know that I have felt sooooo incredible tired and achey these past few days. My joints ache like it's my job! My ankles and shoulders hurt so badly I was contemplating taking narcotics....which for me is big. My thumbs were not too happy and neither were my fingers or muscles, maybe it is a flare. Who knows?

I am either Okie Dokie, things go right through me and I have green diarrhea, or I get the Koo Koo Clock conspiracy. I will keep you posted if this is in fact confirmed as Big S territory.

That's it for the TMI - I think I have been intimate enough about myself for the day, so with that I will leave you - hopefully not with a visual, unless it is that of a beautiful sunrise such as the one I shared with my son this morning.

Thanks for reading - and again, if you get this too...please let me know.

Much peace and Love ~

Stacie









A Quick Thank You!!

I know...for those of you who know me, the word quick and myself in the same sentence may cause a few chuckles. If you don't know me, then I have to admit that I tend to ramble.....just a little

So I am going to try to make it quick and say Thank you!

I am saying Thank You to everyone that is reading my blog and responding to my blog. It fills my heart and makes me so happy when I see a comment.

It is such an amazing feeling to see that people care enough and are brave enough to share.

 I know, I am kind of a fluffy dork - but what can I say, I am a Hallmark Person - and seeing that people are caring enough to;

A. Read and
B. Comment

Just fills me so deeply and truly makes me so happy. Even though I may not be physically talking with you, I do feel in a way I am speaking to you and that in and of itself helps me to not feel so alone in all of "this".

And the comments help to validate my own feelings and validation is so important at times. I just hope that some of my silly rants and ravings are in some way helping to validate your feelings too.

So, truly - It is heartwarming and heart-melting to know that there are people out there who care enough to take their time and post on "my" blog, especially since ones time is so precious.

So with that I want to say Thank You, meant with the deepest sincerity and heartfelt truth.

Thank you for caring, thank you for sharing and thank you for being so kind. 

(Que Sarah McLachlan background music.....or touching Hallmark Card commercial) ;  )

Much peace and love to all ~  (seriously)

Stacie

Hotel Arizona

So my friend was in the hospital for about a week (non-sclero related) and after she was discharged on Wednesday, we got together on Thursday for some errands and lunch and decided that we had paid our Dell Webb (Hospital) dues and we deserved an impromptu mini spontaneous get-away, SO that is just what we did.

We went to The Arizona Grand Resort for an overnight in a nice soft down filled comforter bed with room service dinner, girl talk all night and lazy river tubing the next day. It was just what the doctor ordered. Perfection!

I feel like quite the jet setter lately. I am trying to make the most out of the end of summer and eek out as much fun as possible. I am at the home stretch. I have the Chariots of Fire theme playing and am slo-mo running to the finish line wind in my hair toward the ribbon and all.

Its like my private Extreme Summer Makeover - only instead of "move that bus" - my theme is "move that butt" (or sadly the two could be interchangeable with all of my post steroid weight gain..sigh)

But like I said - I am pushing through and making the most of the end of summer and trying to do as much as possible and moving my booty even though some days I don't want to, but I need some adventure in my life so I am trying to be spontaneous.

My one year anniversary is coming up September 12th. That is the first day my local rheumy uttered the words Centromere Antibody and Limited Scleroderma.

Even though I got the official Mayo stamp of approval November 1st - I still consider my anniversary as Sept 12th. It is a weird sensation having been through the roller coaster of the first year - but I am not there yet, so now I am just concentrating on ending the summer with a bang and living outside the box.

I have booked a spontaneous trip to see my sister and a few dear friends in Hot Springs Arkansas over Labor Day which should be a blast!! And upon my return from my last trip of the summer, my anniversary will be right around the corner.

At that point as my son will be in school and the lazy days of summer will be over I will have to change my programming to Extreme Life Makeover as I need to start reinventing myself and start living in the game again.

I feel like I kind of needed this summer to mourn the loss of my job, my new diagnosis, my MIA brother and a few other issues - but now it is time to pick up my boot straps, put on my big girl pants and get a life!

Bye for now - Off to exercise!!


Ok, yes working on the "Gettin a Life" part!

Being sassy - Strike a Pose - Sizzlin Summer Saluatation


Tuesday, August 3, 2010

A Day in the Life - Living La Vida Sclero

The Beatles. Love them....... A Day in the Life.

Woke up, fell out of bed, Dragged a comb across my head
Found my way downstairs and drank a cup, And looking up I noticed I was late.
Found my coat and grabbed my hat, Made the bus in seconds flat
Found my way upstairs and had a smoke, Somebody spoke and I went into a dream

Scratch......Rewind. My song would go like this, by The "I'm Just Beat"...les

Woke up, sat up in bed, took my pills and cleared my head
The swelling goes down, I finally get up, And wobble downstairs I know this is my fate.
Found my coffee and grabbed more pills, Made it to the couch and there I sat
Fight my way upstairs and their no joke, and the dream part... I wish it were.

Upside, inside out it's Livin La Vida Sclero - where every day is a new adventure. It's like a box of chocolates, you never know what your going to get, but you smile because any candy is good.

Same with Sclero. It is always changing and every day is different. Sometimes I wish it were more consistent because I think there would be less judgement and more understanding, but again - smile and make do with what you got. And this is what I got.

Lately my hands they are a changin....  

My hands seem to be swelling more in the am. Not a huge amount of swelling, but with the mild swelling comes a new feeling of numbness and although I can...it "feels" harder to make a fist - if that makes sense. I am not really sure how to articulate what it is that I am feeling in my hands now. They feel like when you have a lot of swelling and it itches, feels puffy, tight, hard to bend - only they are not that swollen to sight - they only feel that swollen. It takes a while for that feeling to dissipate. Longer than it used to. The swelling is staying longer in the morning, as is the pain. I need to open and close my hands a lot to get the blood moving into them. I don't know if that is really doing anything or if its placebo - but its part of my new morning routine. 

The joint pain is still there, but now I have a pain in my thumb and at times it seems to stick. The index finger on my right hand is still in a constant state of mild swelling and pretty much does not work anymore. It's my quitter finger. For a while I was having trouble with my grip. The doc said it was tenosynovitis and it's par for the course. I don't like this course. I don't even play golf!.

I feel soreness on the actual bones of my fingers. My right wrist is still weak and unable to sustain my weight anymore, so bye bye push ups. When I bend it there is now a physical deformity where a large dip has formed at the joint space. The dip is so deep I could store salt in there and be ready for spontaneous tequila shots at any moment. The doc said he does not see it as a dip, but that a nodule has formed on the bone at the joint space... and nodules are a part of the party.

I put a shout out on the Inspire Site to see if anyone can remember what their hands felt like before they changed. I haven't gotten any response back yet - but in my gut I am wondering if these new feelings in my hands mean that things are changing which scares me. Just when you thought it was safe to go into the water........

Things go changing again. So that's the latest with the hands. They are not working as well as they were a few weeks ago, so we will see what time brings. The MD says to stay on the Methotrextae injections as it takes about 8 weeks for them to work, so we will see. They scare me. I hate putting toxic chemo into my body, but I think that these recent changes have sorta scared me straight. I think I got a little too big for my britches and felt pretty safe for a while with my disease. These new changes are a little reminder that this beast evolves and things will progress. 

Again - I know I have said it before, but I wish that more people understood that aspect of this disease. It is not a constant. Sometimes we can and sometimes we can't - but I don't think people get that. 

For right now I do better from mid morning (feet and hand swelling has dissipated) to mid evening around 6:30 - I get a little tired and dizzy around then, like my body is reminding me not to get too cocky. If I rest through it, then I am good until bed. Unless I have a bad day or flare. 

But what I would like people to understand most, is that we don't just wake up, jump out of bed and drag a comb across our heads... 

There is real fatigue that makes getting up early very difficult, there is true swelling that makes jumping out of bed impossible, the mornings do not belong to us anymore and if we have an appointment or work, we need to plan accordingly and get up early enough to be able to rest before we start our day. As silly as that sounds, that is Livin La Vida Sclero.

The only other news from my recent Rheumy appt was a need for follow up CT scan. My last CT scan showed enlarged liver and spleen which is pretty normal for autoimmune disease with our crazy (or should I say Loco) immune system and bladder wall thickening.

Apparently I need to follow the bladder wall thickening as it IS the Big S. Who knew? I didn't. No joke. No one told me. So I guess the beast really likes my innards because it is now in my urinary system as well , feeding on my bladder. The collagen /fibroblasts are causing the bladder wall thickening which, per the MD, may be why I always feel like I have to go pee. So that mystery solved.

I will get the CT scan and keep you updated. Good Times.

I guess that's all for now.

So long, fare well,  auf Wiedersehen, good night -

Adieu, adieu, to yieu and yieu and yieu







Monday, August 2, 2010

Vacation!!!

Vacation all I ever wanted..... Classic Go Go's and that's just what I did.

I went. I was Go Go Gadget on vacation and loved every minute of it.

It was such an amazing and beautiful time.

It was my Dad's 70th Birthday so our entire family met up in Charlotte, NC for a Big B-Day Bash for him. We flew in from the ol' AZ and my sister Deb drove in with her family from Louisiana and we all met at my sister Bridgette's beautiful home.

We started our vaca with a tour of my sissy's town called Davidson, NC. Very quaint, clean and adorable. We then toured Charlotte which I must say is one of the cleanest cities I have ever seen in my life. It was really pretty. We loved all the green coming from the desert.

The next day we piled in our two cars to fit the Archibald-Stuckman-Ashbrook-Morgan crew (AKA - Archbrookstruckamorg) and headed up to Boone, NC.

It was really fun. We were complete dorks and took Boone, NC home of "Happy Appy" my Dad's Alma Matter by storm - We were "The Blue Crew" as we had matching blue shirts made for everyone to wear. It was pretty funny to see the eyes of the shop keepers and restaurant owners when 15 rather tall people (My dad is 6' 7" and I am 5' 11" with all other blue bodies in between) wearing matching blue shirts walked in. Not to mention we had obnoxiously painted our cars with witty little sayings such as "Boone-Chicka-Rocka" - Boone or Bust - Family Truckster and more.

We had a great time though. We walked around Boone, saw my Dad's Alma Matter, did a beautiful hike called Linswood Falls, went to a great outdoor cafe in Blowing Rock and then went to see "said" Blowing Rock. We then spent the night in Ashville, NC which is just dynamic. Gorgeous, trendy, funky, eclectic, cultured and beautiful city. We toured the Biltmore Mansion and then drove back home to my sisters house in Charlotte.

I did pretty great I must say. I did the hike on Monday with no problems and finished the Biltmore tour, but I think after the hike the day before and touring the Biltmore for 2.5hrs with no AC my joints went on strike and I started limping. My ankles decided to close up shop and go on their own vacation - but I did finish it and it was amazing. It worked out well too as we drive home from the tour which gave my joints time to rest.

The next day we got ready for the Lake Lounge Leg of our trip. My sister has a home in Smith Mountain Lake, Virginia - so we packed up the trucksters and drove up to Virginia. It was about 3hrs, but a beautiful drive. That night we just unpacked, made dinner and got acquainted with the house and gorgeous lake view. My family had some wine (none for me, on Methotrextae) on the patio and enjoyed the view, the sky and the night air. Kiddos were downstairs in the playroom and it was a perfect transition to the next leg of our vacation.

Ah, Thursday. The Lake. Nothing beats lounging on a float in a nice cool lake. It was heaven (sans the mosquito's). My hubby woke me up early and we did a kayak around one of the fingers of the lake by my sissy's home. It was so quiet and peaceful. The lake was like glass and it was just us. It was a really beautiful memory. When we got back, my sis Deb wanted to kayak so of course I obliged and we had fun re-enacting the episode of "I Shouldn't Be Alive" we watched the night before while being complete dorks in a kayak. When WE got back then my mom - AKA - MJ wanted to try to kayak, so we of course obliged again and had rather silly kayak races againts my mom/Bridgette's kayak and ours. Again SO fun and so perfect. The rest of the day was typical lake living. A little boating, a little tubing, a little floating, a little swimming and a LOT of relaxing.

The next day was the same, Lake Living and Lovin' every minute of it. We got the boat tour of the entire lake and it was just gorgeous. I mean, beautiful. My hands were a bit angry with me from my stint as a pro-am kayaker the day before, so I took it a bit easier that day. I was disappointed because I wanted to try tubing, but I knew my hands would not hold me (there is a lot of me to hold). They were already not agreeing to open a water bottle, so I didn't think they would like holding me on a tube for dear life - so I sat out on the tubing and just enjoyed the boat and the wind in my hair. I love that feeling, It is the best. It reminds you you are alive.

Saturday we took another road trip (otherwise known as a "Dumb Ride" in Archibald-ease) and went to see Thomas Jefferson's summer home and did the tour. It was great. Really interesting. He was a quirky guy. I think a tad OCD. His home was really intriguing. From there we did the Blue Ridge Parkway and sat in awe of the beauty and headed back to Charlotte to get ready for our flight home the next day.

It was an amazing trip full of so many laughs, new catch phrases, happy memories and almost pee in your pants moments. It was a hoot and a half. It was beautiful to see my Dad's face at his surprise party and the look on his face when he saw "The Shirts" (which the back was filled with many  famous Big D-isms). It was awesome to see all of the cousins play together, great to see my sisters, and just so much fun to get away and laugh - love and make memories.

I couldn't have asked for a better vacation. I have included some pics for your viewing pleasure. Enjoy!

Peace and Love ~

The Archibald Sisters


Big D 70th Birthday Bash memorial Poster
Big D and his girls

Blue Crew taking Boone by Storm
The Biltmore
The Blue Crew in Boone. NC

Arch-Brook-Strucka-Morg Family Truckster




LET'S FIND A CURE FOR SCLERODERMA

Pretzel Update

I know...........It's been a while and I am so sorry but.....I went on Vacation!! Wahoo.

but because I remember my last post ended with me in a funk and craving a pretzel I thought I'd share, that yes..I did in fact finally get my Sam's Club pretzel.

Why are they so good? Perhaps the sweet taste of a bargain... or maybe because I can get a fountain diet coke too for just another .88 cents. (Love fountain pop!)

So yep, got the pretzel and started feeling better and went bee-bopping around getting ready for vacation. Ran errands, went shopping for the standard vacation must haves...new undies, socks and the like.

Weirdest thing happened to me while I was in line at the Old Walmart though. Thought I'd share.

So I am standing in line at the Walmart bathroom and an employee is in line ahead of me with a stack of papers. The next stall opens up and its her turn to use the potty but she turns to me and says "you go ahead...(holds up stack of papers) I'm gonna be a while"

Ummmmmmmmmmmm. Okay? Thanks?

Number one - who goes big potty at Walmart and reads the paper

and Number two (No pun intended) who shares that information with a random stranger.

Anyway - Thought that was hilarious and needed to share.

Hope all is well with all of you.


Peace and Love

Stacie

TOGETHER LET'S FIND A CURE FOR SCLERODERMA