When Perspiration Attacks! Oh Yeah… More Scleroderma Fun!

Yes, when my hands sweat it burns.  Not like a gentle warming, I’m talking Linda Blair response to holy water in the movie, The Exorcist – only on my hands.  And, so that’s how my hands feel today.

It has happened many times, I am sharing my experience with you because I can’t be the only one who has ever been burned by the salt of their own sweat.  I like to put a humorous spin about how scleroderma and sarcoidosis effect me.  But sometimes, things that happen sound so crazy to me, I just have to find the funny.  I think every day that this whole chronic illness experience has been one long strange trip and if I don’t find a way to make fun of it, I will go crazy.

And, just for the record:  I’m not crazy.  The Veteran’s Administration had me tested.  Extensively.  But, if your hands burn from your own sweat, you already know I’m not crazy.

So, what do I do when my hands burn?  Washing provides temporary relief.  I also drink more water than usual.  Keeping cool never works because I dress warm for the cold, then my hands sweat even though they are cold to the touch.  Yep, that’s nuts- not me.

So, in the spirit of laughing at what scares me  to make myself stronger, I’m going to enjoy some Seth Mac Farlane humor.  Join me and laugh.  It will make you stronger.  Need convincing? I will deploy the  never-fail Petter Griffith Persuasion Technique:  Come one!

ABC’s Top Ten Oscar Clips

My favorite clip is The Smokey and The Bandit.  What was your favorite moment?

Have a great Monday everyone! Sing it with me: East Bound and Down… Loaded up and Truckin’!

The Purpose-Free Driven Day

This morning, I felt unusually fatigued.  I had no energy.  My mind said go, my body said no.  So, I pondered the cause of today’s  fatigue with some questions.

Lounging is not a crime!

Were my lungs exchanging oxygen properly?  I breathe easier after taking viagra: did I take it? Then there’s  Pulmonary Fibrosis because of scleroderma and/or sarcoidosis: because really, who the hell can even tell the difference between the symptoms?  Okay, I  know it can be done if  I gave myself a pulmonary functions test every morning; but I don’t have that kind of time; there is no such thing as a live in respiratory therapist and if there is, I never want to know.  Was my Pulmonary Fibrosis getting worse?  Then I remembered I was breathing excellent yesterday, so that wasn’t it.

Maybe it was a football hangover from the Packer’s game last night.    I’m no expert, but that was clearly an interception.  That was a “hug” not a touchdown!  I was glad my son was not present so he didn’t witness my lack of creativity as I relentlessly hurled foul language at my unsuspecting and innocent TV machine.   I thought about it some more, and realized  that was a reach as a reason for my fatigue.  The big picture is that  it’s just a game.  And although the horrible call effected the outcome of the game and placed my beloved Packers in second to last place in their division, it did not warrant the kind of anxiety that would make me feel so exhausted, so I moved onto the next scenario.

Yesterday was port-o-cath flush day.  Between infusions, I have to drive 46 miles, one way, to get my port flushed to avoid  clotting.  Let’s call it Port Maintenance.  I was exhausted after I got home and even took a short nap after the drive.  Heparin is injected into my port at the end of my flush, so I wondered: Could that small dose of heparin make me tired this morning?  No.  It was inconsistent with past flushes.  The low dose of heparin does not effect me in that way, why would it start now?

Then, I did something.  Something I had done before, but changed my view about doing it.  Isn’t reality about how we view things anyway?  Sure grass is green, but what if I was color blind?  The grass would still be grass, the color green would just look different to me because it would only pick up the hues my cones could pick up, right?  What is this “something” I tried?  It’s called rest.

Yes, I have rested before: usually because of something going on with the progression of scleroderma or sarcoidosis; some kind of weird infection with a MRSA kick; a flare of some kind; or an injury on the verge of infection.  After almost twenty years since my first diagnosis, the possibilities are limitless.  But what if; and I mean a big IF here, what if I just took the day off?  What if I just rested on the couch in front of the TV?  No computer, no phone within reach and most of all no guilt: just a purpose-free day.

Why not?  Why not have a purpose-free day?  What’s with all this pressure to be purpose driven?  Everyone’s life has a purpose whether we are driven by it or not.  So, I removed the purpose from my day and more important, I removed the guilt.  What is with me and guilt?   Why not live a day without it?    When ever I do rest, I give myself guilt.  Of course, I must blame my Catholic upbringing  for the gift of guilt, but honestly; it’s time to let that guilt go, stop blaming a faith and just go about my day: purpose-free.  My guilt is something that I put upon myself.  I need to stop blaming all of Catholicism because blaming takes work and work requires a purpose and the goal here is to be purpose-free.

What could possibly go wrong?  There are no lives on the line.  For Christ’s sake, I’m a Buddhist  and it was time for me to capitalize on the idea there is  “no known Tibetan word for guilt” (The Art of Happiness).  Okay, so I identify more with Zen Buddhism, but let’s not overcomplicate things.  Let’s leave the overcomplicating to that narrative voice in my head.(Please and thank you!)

So here I am at the end of my purpose-free day.  I have to admit, it was a great day.  I took a nap on the recliner.  I took a nao on the couch and even watched Caddyshack.  My purpose-free driven day was a success.   After this post,  I’m ending my day with a little meditation; a shower would probably be a good idea, and I will read a book unit I fall asleep.

Funny how I managed to have a successful purpose-free day, yet found motivation to write a post.  I’m not writing this post out of guilt.  I’m writing this simply for fun. The fact I have scleroderma and  sarcoidosis and pulmonary fibrosis is not fun.  They are just a part of me.  I am not them.  They do not define my purpose or need to create.  It feels good to express myself.  I use my experience with Sarcoidosis, Scleroderma, pulmonary fibrosis, Raynaud’s and anything else the world throws at me the way an artists uses colors in a painting.   I suppose that’s why expression is referred to as art.  I’m not saying my posts are a work of art, but I am making something with my words.  Writing is my way of finger painting.  At times, it’s messy but  it’s evidence of my existence in this plane.  Dare I say my “Special Purpose”?  Na, too easy.  I’m just going to enjoy it.   I had a day with no guilt and, I feel good.  My little something for the effort: “So, I got that goin’ for me:  Which is nice.” 


Scleroderma & Life’s Complexities can be so Boring!

We don’t get a break when we want one  from our chronic illness or whatever it is that’s making our lives more complex.  So after reading a post by Chris of “Life Your Way”, I created a Facebook page.  No diseases, no meds, no doctor’s appointments and no pain.  It’s called, “President: Itty Bitty Titty Committee”.

Its not really about breasts.  It’s about just laughing at things Chris and I post that we hope you find funny.

Apicture of a pig and a chicken at the movies reacting to a picture of Bacon and Eggs.

Did you now that Angry Birds is just bacon and eggs fighting?

Some already have a problem with the name. (every body’s a critic) I have to tell you, It sounds a lot better than “Mammals who want to see if they can make you laugh without talking about illnesses, meds, aches and pains.”

So admit it, “President: Itty Bitty Tittie committee”, sounds snappy.

Don’t let the name fool you, it’s for all humans and size doesn’t matter.  Everyone who “likes” the page is automatically a president.   If you prefer a low-key role, just be an observer and like the page just so you can get updates and see some things we think are funny.

So take a break from Scleroderma, whatever your chronic illness is and life’s complexities and check it out.  It’s all about living in the now baby.

Twitter is Down! Emergency Anti-Productivity Protocol Engaged.


Children running wild and pandemonium as we cope with possible productivity.

Like many, I too am experiencing problems with Twitter.

Click below for more info.

From MSNBC and Mashable

To avoid possible cases of productivity, here is a 6.58 minute video from Liquid Generation.com of the 10 best funniest movie scenes 1997-2007.

Click to enjoy and avoid possible outbursts of productivity.

These clips are NOT for the kiddies.  It may tide you over.

In case that wasn’t enough, here are the 25 best Super Bowl Commercials of All Time.

Click to avoid productivity

A Crazy Writer with a Blog and Now a Store

Yes, it’s come to this; and it’s a good thing.

On my blog posts I talk about products I have used or still use for exercise, skin care and books.  The Amazon Store here on the Turtle features only items I have used, books I have read or on my reading list and yes, even my favorite brand of condoms.  You can’t buy these condoms in the stores, so why not get them here?

So that’s what my store is about.  Things I use and would recommend to friends.  If you wish, you can also search for items not listed.  By clicking on any of the featured products, you can go right into Amazon and search.  Eventually, I will probably come up with some cute merch, but for now let’s start with stuff I like and go from there.

Please feel free to ask me any questions about products I have posted.  If I can save you some time and money, I am happy to do it.  For example, I use Kama Sutra’s Sweet Almond oil as a moisturizer.  If you have allergies to Almonds, for Pete’s sake don’t buy it.  Okay that may be an easy example, but I believe that you, my readers, are smart so you get the point.

About the Google Ads, I just saw one to buy live turtles on line.  I do not in any way support the buying and selling of animals on line.  I am figuring out my filters and with the name turtle in the title of this blog, there are a few hiccups I need to work out.  I thank you in advance for your patience.

I’m not going to pretend I will be donating proceeds to a charity based on percentages of sales.  I will pay taxes like everyone else on any earnings from the store because this is not a non-profit organization.  Hell, it’s not even an organization.  I’m just some crazy writer with some chronic illnesses who is writing about my experiences.  My greatest wish is that the what I write will help others.  The store is there to help with the cost of the site and maybe support mama’s pedicure habit.

Above everything, thank you for continuing to read about Scleroderma, Sarcoidosis, my perspective of life  and ways to adapt and overcome.  We’re in this together.  We are not our diagnosis, we are not alone and we are stronger than we can imagine.  (If you can think of any other bumper sticker phrases, please feel free to leave some in the comment section.)

And now a few words from Ricky Bobby & Cal Norton from Talladega Nights.  Click the parts for the funny.

Part 1

Part 2