Fear And Writing Like A Grown-Up

 Good morning!

 I had this wonderful post all planned out where I shared links to the best, most inspiring blog posts I’d read this past week…but then I remembered that I’d been super distracted and hadn’t actually read ANY blog posts this week…so instead of writing, I read all of them I’d missed.

 And I promise, they were all good! So I’m going to cheat a bit and simply tell you to check out the “Sites I Love To See” link up top. *grin*

 Instead of what I had planned, I’m going to give dire warnings instead! (insert creepy “dire warnings” music here)*deep dramatic breath* Next month is going to be weirded-out, culture shock here on the ‘ol blog.

 As you may remember, I signed up for the WEGO Health Writer’s Challenge…and I received the list of writer’s prompts this week. I am afraid…VERY afraid! Let me tell you, I am SO in over my head with this! I mean, all the prompts look like they’re directed towards REAL writers. No prompts about poo, noises your body makes, how many times you’ve walked into a wall this week, or how much Docs may or may not allegedly “hate” you.

 But fear not! I laugh in the face of the seemingly impossible! So…I WILL rise to the challenge! I WILL write from the prompts! And I WILL bend them to my will (and demented humor) and make them my bee-yot-ches!

 So, even if you’re currently bored or have other pressing engagements, be sure to click back over here on April 1^st to see just how bad I can muck this thing up! (I may end up being the first person EVER to be kicked out of WEGO…)

…May your days be Merry and Bright, and may all your…ummmm…Spring Days be…ummmm…NOT white!

You Know You're A Giant Pain When...

 Hi-ho! Good afternoon! I know…I’m a bit late writing today, but this morning (blushing just a little) I was playing on various social networking sites and kinda lost track of time. So, this is the first chance I’ve gotten…*grin*



My daughter and me modleling
our nifty RA Awareness bracelets!



 I’ve actually been racking my brain trying to come up with what bit of awesomeness I could share with you today, when smack-dab in the middle of an appointment with my GP it hit me! The “Top Ten” signs you have become a Chronic pain-in-the-tuckus to your Docs. Yep…great idea, if I do say so myself! Really, the only hard part now id narrowing it down to ONLY ten!

 Oh, but before I get to the informational segment, I wanted to share with you the wow-zer Rheumatoid Arthritis Bracelet I got from Chronic Curve! I am pleased to say that the actual bracelet is just as beautiful as the “mock-up” in the picture. You add to that the fact that all the proceeds go to research and scholarship funds, and what’s not to like?

 OK, now for the list….

 Top Ten Signs You have Become A Chronic Pain-In-The-Tuckus To Your Docs (In no particular order.)

1) You hear the Doc taking a moment to brace himself and a few deep, calming breaths outside the exam room door before he comes in. (My daughter’s response when she heard this one was, “Oh my God, Mom! You heard him too?” HA!)

2) You start noticing a pattern in the scheduling of your appointments…you always seem to arrive in the middle of a “dry spell”, leaving you in an empty waiting room. Not to worry! Your Doc isn’t loosing business…the staff is simply under strict orders not to leave you alone with any of the other patients. That way there’s less chance of your alleged “attitude” rubbing off on anyone else.

3) When you approach the “Check-In” window, the receptionist always appears to be in some sort of up-right, seated-fetal-position, her hands quaking as they hover over the keyboard. (This occasionally can be seen at the “Check-Out” window as well, dependent on the amount of foul language that was overheard emanating from the exam room.) At first, I thought they must be keeping the office a little too cold for the poor woman…then I happened to “surprise” her one afternoon, and realized it was actually behavior unique to her dealings with me….Hmmmm…

4) Your Specialist has installed Caller ID and the staff is under strict orders to let ALL your calls go straight to voicemail. You get bonus points if more than one Specialist has done this!

5) The receptionist doesn’t just know you by the sound of your voice, but you’ve heard any comment resembling, “Mrs. Dean. It’s been what? A whole week?” or “Mrs. Dean….is it that time again already?”

6) (This one isn’t really a “Doc” thing, but it fits right in…) The nice ladies at the Pharmacy not only know you on a first-name basis, but they put all other orders on hold and fill yours first…so you don’t have to wait…so they can get you OUT!

7) The Nurses no longer make pleasant small talk while they take your blood pressure and pulse, but instead look pale and nervous. Or even worse…they start taking their OWN blood pressure and pulse at the mere site of you! (That one’s REALLY a bad sign!)

8) Your Specialist has scheduled you for your third Colonoscopy this year…and he’s your HEART Specialist! (Ouch!)

9) Your spouse gives you the “first day of kindergarten” speech before EVERY Doc appointment. “OK, honey. Now, you know it’s not nice to call other people names. Right? And it’s not nice to throw things. Right? Remember to use your “inside” voice when your inside and don’t run with scissors. Got it?” (Just do NOT ask what said scissors could or could not be for…plausible deniability! That’s the key!)

And last, but far from least…

10) women only: Your favorite Doc, KNOWING you’re done with your “baby years” mysteriously moves to an OBGYN practice! (Just kiddin' Doc. B! Or...at least I hope...*nervous grin*)

OK, for the guys: Your favorite Doc mysteriously moves to an OBGYN practice!

 May your evening be filled with laughter and foot rubs!

White-Out And Doc's Revenge

"Need I say more?" or
"A Picture's worth a thousand words."

 Good morning everyone! I kinda owe you guys an explanation about yesterday’s post.

 First off, to any “young people” reading this, where the heck are your parents and why are they allowing you to read this crap? (Just kiddin’!) Really though…if you’re ordered to do a test, you should do the darned thing! The Docs order these things for a reason, so just ride it out and it’ll be over soon enough.

 Now, for the grown-ups…Enough was enough! I was in NO condition to undergo that crap yesterday, with my pain being at a solid “8” to begin with. (*see below) The fact that the entire experience was like a Three Stooges nightmare did NOT make it any better. I was fed up with being a “good girl” and decided right then was a good time to take ownership of my flippin’ life! The putzs had their answer…so there really was no point drinking MORE Barium and playing nice any longer. So I didn’t.

 I am in no way advocating walking out in the middle of anything or refusing a test…unless it’s what you feel is in the best interest of your health. Yesterday, it was not only in the best interest of MY health, but also the health of those around me…because had I been forced to drink anything else, SOMEONE was going to get hurt! (Whew! Glad I got that out of my system!)

 As it was, the “Forgetful Doc” at the controls had his revenge…ALL NIGHT LONG! Before I left, the Nurse cautioned me the Barium would “stove me up” and I should probably take a laxative and stool softener. (Did you NOT read my Meds List? REALLY?) By the time we reached home, I was in a cold sweat. I barely made it to the potty before a veritable FOUNTAIN of Barium found it’s way out…the back door! I was pooing white-out the entire night…and into the morning, so far. (How’s that for things not moving, Doc?) (I know I promised no more “poo” posts…but it was needed for the full effect! *grin*)

 Switching gears so fast your head is now spinning, last week I read (don’t remember where) that people should create their own “pain scale”, sine we all experience pain differently. So…this morning I did just that. I’m going to attach a copy of this to my Meds List I give to the Docs. That way, when I say I’m at a “5”…or an “8”, there’s an understanding of the words coming out of my mouth. (Not a bad idea, if I do say so myself…)
My Personal "Pain Scale"

1) It's a myth. You're making this up, right?

2) My dream...in a perfect world, or pretty much after a shot of Nubain.

3) My daily level before "this" all started.

4) My GOOD days.

5)The average day. Pretty much as fully finctional as it gets.

6) Functional, but feel like crap-on-toast.

7) I DO NOT feel well at all! Today, I am a "couch-slug" and eat my weight in Vicodin.

8) Border-line migraine day.

8.5) Exposed nerve or abscessed tooth pain. Giving natural birth pain.

9) One step away from begging for someone to put me out of my misery.

10) Full on migraine. If it were not for the knowledge that there are drugs that will make it stop...Basically, the worst pain imaginable and there are no words to describe it.

 Here's hoping you're at a "3" or less for the day!


  

Barium And The Bad Girl

 #1) Yep! I’ve been deconstructing-reconstructing again! And I’m pretty sure I’m not done yet…*grin* Let’s just call it Spring Cleaning…

 #2) This is a little tale for those who erroneously believe me to be a “nice” person…

 
…Today I had a novel little test where they force you to go food-less and drink-less for a minimum of eight hours, convince you to drink copious amounts of Barium against your will, then walk circles in the corridors while wearing only a couple of over-lapping hospital gowns!

 Just my PERFECT luck, I woke with ANOTHER border-line migraine. (We WILL be discussing this with the Doc VERY soon!) I attempted to call and cancel the afore-mentioned test, but no one was in the office. BLAH! So, off we went to the Hospital….far, far away. No morning pot of coffee, no morning breakfast bar.

 Things at the H were running behind, but I was OK with that. I can wait, no problem!

 When I got my “snazzy” H-gown on (and let me tell ya, I looked HOT!) they took me to a sweet, little room called “The Barium Kitchen”. (I should have ran right then and there!) At that point, a very nice Nurse described to me a test that had NOTHING to do with what I was there for…So NOT a good sign!

 I described to her the test I was there to take, we compared notes, she chatted with the Doc, phone calls were made, and 15 minutes later we were all finally in agreement about what FUN things I was going to do next. The first of which was drink a cup of Barium…then another…

They took a few films then sent me off with a THIRD cup to “power-walk” the corridors for 30 minutes. They were kind and did allow me to take a dose of my migraine meds (possibly due to the fact that I began to cry and blubber about pain…I want to go home…had tried to cancel…that general sort of thing!)

 After my allotted 30, they pulled me back in, took more films, and proceeded to give me A FOURTH CUP OF BARIUM and send me off for more hall-walking! Fortunately, meds had kicked in by now, so I was a bit less “vocal” by this point.

 Again…they called me in, took more films…then it happened. (insert sinister music here)The Doc had already taken a small wee-wee in my Wheaties by asking me the same question about previous surgeries THREE TIMES…which he proceeded to ask a fourth, followed by inquiring if I had a uterus. (What that had to do with how fast or slow food moved through my small intestine, I will never be able to puzzle out!) EX-SQUEEZE-ME WHAT? I laid there for about 30 seconds, two steps past WTF?

 Then the poor, poor guy uttered the words of doom, “We’re sending you out to have lunch with your husband, then we’ll try again. It’s just not moving enough.”

W H A T !?!

 There really was no thought involved…only from-the-gut action. I jumped off the table, began untying my gown as I hit the door with the speed of PMS. I informed the Nurse, as politely as a tooth-grinding snarl would allow, that I would NOT be back. In fact, this test was OVER! After all, he apparently had his answer…it wasn’t moving like it should. So, I was going home! (This, mind you was three hours into a two hour test.)

 And we did. Stopping along the way only to feed the caffeine-deprived beast that resides within! I’m beginning to think I’m like the Incredible Hulk, only never mind about making me mad…don’t deny me caffeine. You really wouldn’t like me when I don’t have caffeine!

 Yep, here I sit…just waiting for the GI Nurse to call and attempt to chide me…just waitin’…he! he! he!

 So you see, I’m NOT a good role model or chronically happy person. Just an intensely caffeine-addicted pain-in-the-behind who MORE than had her fill of Barium for one day. (Translation: I’m human. *grin*)

The "Illness Olympics"

 I am such a good girl! I have developed so much tolerance in the last year…and I am proud of myself! (Sometimes, ya just gotta give yourself a pat on the back!)

 I can honestly say that a year ago, I would have woken up this morning and sat down to rant like…Rantzilla! But, apparently, I have grown more than I thought I had over the course of this roller coaster ride! OK…now that I’ve got ya hooked, wondering what the heck I’m blabbing about, I’ll change the subject. (Just kiddin’! *grin*)

 Yesterday was my first time in a REALLY awkward scenario. One I’m sure every one of us either has dealt with or inevitably will deal with…The One-Upper! Yep, that’s right…it was my first entry into the “Illness Olympics!”

“Ladies and Gentlemen, please take your mark, toes on the line. At the sound of the gun, everyone will begin stating all your aches, pains, various meds and Doc visits, and general hardships originating from your personal chronic illness. The one with the longest, saddest sob-story will take the Medal! Ready…Set…BANG!”

 Are you flippin’ kiddin’?

 I suppose I owe each and every one of you an apology…since I declined to participate. Instead, I sat there with a small, sincere smile on my lips…and kept them firmly glued shut. (Sorry, no Medals for me!)

 Oh…I won’t lie. It was difficult! My first response was incredulous…(Are you f#!king kidding me?) Then I slowly slid into mildly incensed. (Ya know, you haven’t even asked how I’m doing, let alone if I ever got a diagnosis!) I then transitioned into a weird form of amusement. (This is painfully hilarious! Are you really thinking about the words coming out of your mouth!?!) Believe it or not, I eventually ended up in the realm of sympathy. (Everyone has their own, person weight to bear. How heavy your load must seem to live life this way.) Which brings me back to patting myself on the back!

 Honestly, if it had been a situation where I could have walked away, I would have…as anyone should! But, things being what they were…I was slightly TRAPPED! And, in the end, it was good for me. Had I walked away, I never would have worked my way past “WTF?” and gotten the knots out of my guts. And that’s not a good place for anyone to be stuck.

 Now…I’ve read enough books, blogs, and articles to realize it’s human nature to want to share all our demons and problems with others…understanding really does “lighten the load” we carry with us daily. But I’ve also become PAINFULLY aware that is it also human nature to run like hell from that which scares us…and things we don’t understand or that remind us of our own mortality tend to put the fear in most. So, I’m working HARD on NOT “sharing” all the gory details with most of the “healthy” people in my life. It makes for far fewer awkward moments.

 And as for those dedicated competitors in events like “I Take More Meds Than You” and “My Life Sucks More Than Yours Does?” Well, as far as the first one goes...I take as few meds as I can get away with and only what I absolutely could not function without. I’ve never understood the pride in the number of chemicals ingested in one day. I’m assuming that if your taking them, you REALLY need them. Where’s the completion there?

 And as for the second race? You win! Hands down! Why? BECAUSE MY LIFE DOES NOT SUCK! That’s right…no matter what’s going on health-wise, how crappy I may look to you, how funky I am walking (or falling over, as the case may be), or how many times I’ve played “Lab Rat” this month, MY LIFE IS A ROCKIN’ PLACE TO BE!

 So, for all my supporters out there, I again apologize for returning empty handed. But…in my humble opinion…this is one distinct case where “to the Victors go the spoils” completely fails to apply!

St. Patrick And Chickens

One thing beautiful about today!

 Good morning! Oh, and Happy St. Patrick’s Day to one and all!

 I’ve always been a tad bit at odds about this Holiday. I mean, it’s actually a Holy Day! It’s a Saint’s day, after all. Then it was morphed into a day of pride in your Irish heritage. AWESOME! (Think MaGaha is Irish enough? If not, just ask hubby about the temper…*grin*) I am VERY proud of my heritage!



Another thing beautiful about today!



 But, in the last ten years or so, I’ve begun referring to it as “Amateur Night.” Why? Because it’s become yet one more excuse for too many people to binge-drink…and then too many of them to hit the road. *sigh* How many flippin’ T-shirts have you seen proclaiming “EVERYONE’S IRISH TODAY!” (No one wanted to wear those not so long ago when signs proclaiming “No Irish Need Apply” were hung under the “Help Wanted” signs…But I digress.)

 OK, rant over! I Promise! I’ll even look on the bright side…the radio stations will all be playing some rockin’ Irish tunes today, and I LOVE Irish music!

Some of our Banties playing in the woods.
Aren't they friggin' adorable?

Muskovy Mom on a hidden nest.
Shoot! More ducks...

 Actually, today couldn’t be better…I’m being "mauled" by a cat, I’ve got hot coffee in the pot, and the weather is wonderfully mild! I don’t even mind that I look like the Stay-Puft Marshmallow Man! (Oh, the joys of new meds!)

 So…on behalf of all that is beautiful about today, I’ll get up and go do some livin’! I hope you all have an awesome, pain-free-as-it-gets day!

Our "ditch"...I guess Spring
really is here!

Death By Social Networking

 Today is bright and glorious! Actually, it’s seriously dark because the Sun hasn’t come up yet…but it IS glorious, because I DO NOT HAVE A HEADACHE! (Doin’ a little zombie happy dance!)

Zombie Happy Dance!

 Yesterday I would normally have shared with you all the completely awesome posts I’d found during the week, but instead I ingested a drug-cocktail that probably would have stunned a full grown water buffalo! Oh…the joys of migraines!

 But…in “honor” of the migraine-beast, I will share one blog I have fallen head-over-heels for! “That M Word: A Migraine Blog.” The very nice Lady who owns it posts not only tons of GREAT migraine info, but ever Wednesday is “What Is It Wednesday” where she highlights a different illness and offers links and education. This past Wednesday was near-and-dear to my heart…Raynaud’s.

 Well, this week I’ve broken one of my personal “I don’t wanna” Rules and I joined several groups. Yes…I’m dipping my toes into the world of on-line communities. And I’m a little conflicted about it. Then why the heck did I do it?

(pause for deep thinking)

 I have stated that my hope is to help others know that they’re not alone, as well as finding new ways to laugh at the not-really-funny ways that chronic illness turns our lives into an up-side-down cake make of poo. Well…I had the epiphany several weeks ago that no matter how charming and funny I am (can NOT even type that with a straight face!) people aren’t going to be drawn to the magnetic whimsy of my blog…if they don’t even know about it! Which begs the question, how can I achieve my goal of helping others if others don’t know I exist?

 Which, in my own special, meandering way, brings us back to “joining.” I told you guys I joined WEGO Health, not only to let people know I exist, but also to hopefully learn new and creative ways of causing mischief and mayhem! Nooo…I meant new ways of helping! (*lop-sided grin*) I also joined the International Scleroderma Network (ISN) for the same reasons, plus the added bonus of learning more about my own disease and how others cope with it.

 I am STILL trying to figure out how the holy-heck you use flippin’ Twitter! I guess I need to RE-read my Idiot’s Guide…*sigh*…but one day I’ll “get it” and then the world is my oyster! Nooo…I meant then I’ll be able to spread more awareness and good intentions to all the good boys and girls of the Internet. Just like a demented, chick-version of Santa!

 You add to that FaceBook, Tumblr, and a few others I’m not quite sure of yet…and you have a completely, complicated MESS! Social Networking? More like a social cluster-f*#k!

*side note- Me thinks today I need to make a schedule and set of personal guide-lines for how I’m supposed to manage these and how much time I’m going to allow myself daily. Sounds good, anyway!

 Perhaps that’s the first thing I should do this afternoon…search for an article about how to manage your media…how NOT to drown in the Sea of Social…(how to Network with a brain?)

 I know what will inevitably happen is I will find out what works and what doesn’t. I’ll keep the good and toss the “dead weight” out the back door. And all the books, articles, and personal advice won’t really do much (except clutter my swiss-cheese brain even more!) in the long run. Just like everything else in life, I’ll muddle through by trial-and-error and eventually figure it out. (Hopefully sooner than later!)

 Then, and only then, will I be able to comfortably work on and achieve my goal of complete and total Word Media domination! Nooo…I meant, doing my small part in hopefully making the day of chronically ill peoples of the world a little brighter, and their paths (at least the mental ones) a little smoother.

Now…time to figure out how to imbed a friggin’ link on a bio page!

Butterflys And Slug-Powers

 OK. I did it! This past weekend, I submitted my “story” to the ISN. I’ve not gotten an e-mail back from them yet, but I did it…and that’s the important part for me. My own tiny, weird version of acceptance.

 There are so many ways of accepting things…acknowledging our limits…incorporating our illnesses into our world-view, our life styles, and the way we greet each day.

 And just for the record, I have absolutely NO IDEA where the heck I’m going with this! All I know is I’m sitting here, slurping da java, perusing FaceBook, and it hit me! I’m a lost caterpillar/butterfly. I’m awake and aware that something is different…but still safe in my cocoon with no flippin’ idea about what comes next!

 Do I kick my way out, spread my totally awesome wings, and fly loud-n-proud all around the meadow? Or do I quietly, gracefully emerge and wait patiently (*snort*) as my petite wings dry in the sunlight, then demurely float about the edge of the clearing, pretending nothing has changed?

*side note- I almost choked on my coffee while typing that last sentence! “Demure” is NOT a term I have EVER used anywhere NEAR a reference to myself! Just had to throw that out there…

 Please pardon the swiss-cheese memory if I repeat myself here, but I’m thinking I may have mentioned I am a woman of extremes…never has been much middle ground in my world…So the above scenarios are pretty much the only two options I see. And I’m completely curious how to proceed…

 Then again, I’ve never been one to “float around the edges” of anything…so I think I’ve already made my call…Loud-N-Proud, baby!

Amazing the world with my mad art skills!

 My daughter and I have had this on-going conversation…OK, she’s stood there like a deer-in-headlights while I’ve had a long, drawn out animated conversation with myself…same difference. Anyway, I’m adamant about the fact that disease does NOT define me! It’s a part of my life, but it’s NOT my life! So the quandary is, how do I reconcile making “Awareness” and “Education” such a chunk of my life? By doing so, am I allowing it to “become” my life? (By the way, I LOVE the word “quandary”…it’s just so much fun to say! Just try and say it without smiling…)

 Are all my musings just a by-product of being “recently diagnosed”? Like a recovering 12-stepper, am I simply compelled to tell everyone and anyone that I have “fill-in-the-blank”? (By the way, I do NOT do this…much…) Or, is this just the way I have chosen to make sense of Bob’s intrusion? You know, using my new-found Slug-Powers to sit at a keyboard and offer encouragement and support wrapped in a gnarly layer of laughter? (And just to make a few allowances, currently Bob is taking up quite a bit of time, since we’re riding the Carousel-of-mad-Testing to determine our starting point for treatment.)

 More than one friend has noted I’ve changed…though none have been kind enough to tell me whether it was for the better. *sigh* I’d like to think it has been. I’d like to think I’ve become more compassionate, more aware of the battles others fight on a daily basis and not so trapped inside my own fishbowl. I’d like to think I’m slower to anger (getting mad takes WAY too much energy!) and quicker to laugh. I’d like to think I’ve become a better, more complete human with a deeper understanding that this whole crazy she-bang is simply a journey, and we’re all heading in the same direction regardless of the path we take to get there.

So, just to re-cap… acceptance, I’m human, and (metaphorically) I am one heck of an obnoxiously Technicolored butterfly, struttin’ my stuff from one flower to the next.

 Now, only one question remains…how do you visualize a struttin’ butterfly with Slug-Powers and a lap-top?

He Can't Be Right...Can He?

 I, Chris Dean, do solemnly swear that from this day forward I will not write and/or post anything before 5:00 Am. (In the future, this should drastically cut down on the seriously wacky poo-related posts! *slightly embarrassed grin*)

 Well today is a GLORIOUS morning! Know why? NO TESTS TODAY!

 I was totally blind-sided yesterday! I do NOT remember being told the “stomach emptying test” was a four-hour-long test! Here I am, thinking an hour or so and I’ll be on my way back home…and BAM! Four hours plus the wait to get in…*sigh* Oh yeah, and no food or drink for four hours before or the four hours of…only what they gave you while they were “loading you up!” (So, if you suffer from chronic dry-mouth…be prepared to be tortured.)

  But I did manage to pick up some new info. For instance, did you know it takes the average person’s stomach four hours to empty after they eat? And…at the two hour mark, their stomach has already emptied down to 20% of what they ate? So, it’s like merging in traffic…it goes petty quickly at the beginning, but the longer the line becomes, the slower it goes…only it’s food “merging” into the colon. Fascinating!

 That aside…it was a nice day with the hubby…chatting in the car for three hours, sleeping on each other’s shoulders in the waiting room in between “pictures” of my digesting stomach, and taking turns walking off the stiff joints. I swear, this guy is a trooper! Although, he did lose some Bonus Points on the way home, based purely on a comment he made while we were discussing my “failed” college career. (I have this overwhelming hatred of writing thesis papers…Hey, Porf! Why can’t I simply stand here and argue with you to convince you I’m right…saves time and it’s more fun!)

 So…his comment was, “You’re problem is unless it’s something you’re interested in or something that pertains to you, you just don’t care.” (An observation he probably immediately regretted, I might add.)

 REALLY!?! Then I began thinking. (I HATE it when he makes me think! It’s an indication he could maybe…possibly…in some universe…be right.) Am I really that narrow-visioned? Do I really believe the world revolves around me? (No comment.) Do I really throw out anything that doesn’t pertain or interest me when I’m reading and doing my lame-level research?

 To distract myself while I was enforcing the “pouty-silent” treatment, I read through my e-mail and come across the comment left yesterday about endometriosis. And WHAM-O…I was forced on some deep, down, suppressed sub-conscious level to admit there was a tiny glimmer of truth to his words.

(source: endogirl)  Besides creating this
beautiful photo, endogirl is a GREAT
source of info for endometriosis!

 You see, among many other things, this is Endo-Awareness Month. On one of my various social-networking sites, a very brave and nice young lady has been posting daily facts about endo…and until last night I hadn’t read a single one! Well, I have an autoimmune disease, so I write about and research “autos.” Oh, but wait! I didn’t put “autoimmune” in the description…I chose “chronic illness” instead. (I HATE it when he’s right!)

 So…I’m going to make a concerted effort to read and learn more about chronic illnesses that aren’t autoimmune in origin. That includes but is not limited to endo, anxiety and panic disorders, spinal chord injuries…whatever floats through my in-box that I think could prove helpful! So, if there are any sites you think I should visit to help in my education, drop me a line and help me out!

 Oh…and just so ya know…hubby will NOT be allowed to read today’s entry, since it is in firm violation of wife-law to allow him knowledge of any and all public admissions that he is in any way, shape, of form, right! (You know I love ya, honey! *grin*)

Solid, Liquid, Or...Gas?

 “Tweak it…” they said. TWEAK IT? “Tweak it until you find the right dose to make it happen.” Oh…IT happened, all right! In the living room!

 That’s right, Ladies and Gentlemen…it’s going to be one of THOSE mornings! So grab the adult diapers (for me, please!) and hold on tight…

 There are SO MANY fun ways a body can decide to go on the fritz and it seems when it comes to autoimmune diseases there are so many systems and organs to play with, why stick to just one! Yes, when your body is looking for that special way to say, “You suck!” sometimes Hallmark isn’t enough…sometimes it’s just gotta spring for the REALLY BIG card! (…or two…or three!) Because when it's time for making your life “uncomfortable,” you’re body is willing to go big and spare no expense!

And yes, NOTHING puts a crimp in your style as much as when your body plays the great-grand-daddy trump card of them all…REVENGE OF THE BOWLS!!! (insert sinister music here)

 Right now I bet you’re asking yourself, “Is there no limits to what this woman will write about?” Answer: “Probably…I just haven’t found it yet!”

 Sclero fact…one of the many and wondrous things that can happen is dysmotility of the bowls, which is a really nice, pleasant way of saying constipation. This completely un-awesome thing is not, however, only found in Sclero. Most of the auto’s I’ve read up on include the symptoms constipation/diarrhea in their long lists of possible. (Hey, did you know that IBS can actually manifest as chronic constipation instead of the chronic diarrhea we all think of?)

 So…….when things are moving like Mud River during a dry August, they give you nice sounding things…”helpers”…”aids”…”lax-a-tives”…As my Mother who lived with Crohn’s disease used to say, “The levee’s gotta give sometime!”

 “OK, now why are you writing about this again?” Why, I’m glad you asked! To get back to the point…if your special brand of illness doesn’t involve being jammed-up, chances are one of your med’s side effects will introduce you to it. Just remember, in most cases the first thing they’re going to “try” is the stool softener/laxative combo. So you too could one day find yourself in the same squishy conundrum. (That’s another fun word to say. Glad I found a place to stick it today! *grin*)

 And it’s OK. It happens…(Usually when you least expect it!) I have known people who would go into some sort of insane mini-seizure over the mere mention of poo, let alone any insinuation that they themselves ever did something so nasty! The reality is, this is your body, like it or not. You should learn to be comfortable with it and except all it “ins” and “outs”. And if your “outs” aren’t outing themselves, you REALLY should talk to the Doc.

 I was informed that if you’re not making a doo-dee once a day, your colon isn’t working at peak performance levels. And when your pipes back up, it will effect your already rebelling bod in negative ways. After all, they call it “waste” for a reason…

 So, everybody say it with me…just once…POO! (uncontrollable giggling ensues…at least form my end)

 You see, it’s good to get people laughing…even if it is at my “chemistry” lesson yesterday (forms of matter: gaseous, plasma, liquid, and solid) You know, I thought I was dealing with the gaseous form, but…*grin* And once you’re laughing, it’s easier to discuss the “guts” of the matter…And that would be that you’re poo habits are important to your overall health and can be a symptom of something deeper. So, please, if you’re not pooin’ like a pro, talk to your Doc.

 And I promise, no more poo-talk! (For at least a week...I can't help it, I've got the sense of humor of a 12 year old boy!)

Death Of The Fluffy

 Yesterday I had a follow-up with my GP, Doc X. We had a few “uncomfortable” moments…but all in all, a good day!

 I did, however, discover a few certain truths. First, pulling out test results and reading the “Impressions” section to a Doc as a way of questioning his interpretations…that can be hazardous to your eardrums! Also, NOT a good lead-in to Q&A time. Second, when asking my Doc for assistance in switching Rheumys, you’d better be as prepared as a first-rate Debate Team to justify your request…and no matter what, he’s gonna take it personally…as if you’re doubting the entire Medical Community!

 Another on the list of new-finds is, if your Doc is an “itsy-bitsy-bit” of a control freak, he WILL question any and every diagnosis made by ANYONE but him! It doesn’t help matters when the various and sundry Specialists are leaving the poor guy out-side the loop. *sigh*

 But, on the bright side, he did do some med switching. He was FLOORED by the fact that with a diagnosis of Sclero, lymph nodes popping up EVERYWHERE, and increasing amounts of muscle pain, no one had prescribed any type of anti-inflammatory drug. So…no more Advil for me! And (BLESS HIM!) he side-stepped the Prednisone for now and put me on Meloxicam. My jaw already feels better…I can friggin’ SMILE!!!! (doin’ a flip-flop happy dance!)

He also took me off all asthma meds as he now believes I do NOT have asthma, but it’s related to Sclero…*sigh* The long-and-short of it is, I now have to THINK about breathing! Yep folks, apparently you’re autonomic system can crap-out and you’re body no longer tell your lungs to work…then you have to actually REMEMBER to breath! (Which raises even more questions, since the asthma thing was diagnoses 15 years ago…hmmm…) Yet another thing to try to convince swiss-cheese memory to do. (Although, the whole aching-chest-dizzy-ready-to-pass-out thing is a GREAT reminder!)

 Oh, and the GI gal? AWESOME! Not only did she LISTEN, take TONS of notes, and answer questions she also took the time to draw me an amazing diagram to explain some test results I had questions about. AND she gets bonus points for not scheduling another colonoscopy! Whoop! Whoop!

 Monday I have a test to see how quickly my stomach is emptying. Since my throat is moving out-of-time and my colon is on sabbatical, there’s a good chance my stomach is following their lead. I’ve got new pills to help with the “fire down below” and her hope is it should help with food “moving along”….which means no more burping like a cow eating cabbage every time I eat or drink! The down side is, if it works I’ll never be able to complete my training for Alphabet-Belching or be able to win the Loudest-Longest-Nastiest Belch on the Planet Contest! *sigh*

 She also put me on a “safe laxative” with the instructions to play with the dose until I have one “normal” poo a day. Once this is “worked out” there will be an “end” to the expulsions from the posterior end as well!

  Ya know, I don’t know what I’ll do to amuse myself once all the sounds and smells are no longer a part of my daily life! I cannot imagine a world without CONSTANT sonic-eruptions that can easily clear a room! What will I do when I can no longer shake windows with the bass-tone vibrato of my belches? I guess I can tell the kids they will soon no longer need their gas-masks…(Now they’re doin’ the happy dance!)

 At least I still have the time being, while I’m tweaking the dosage…(giggling maniacally while furiously fanning the air…)

*Curious abourt my obscure title? Years ago my kids picked up a phrase from a cartoon show, "Popping a fluffy," in lew of, "I farted." For some reason, it stuck...(Yep, they're just as nuts as I am! *proud-momma-grin*)

Blah...Blah...Giggle!

(Source: free-your-mind)

 Good morning! Here’s hoping everyone is pain-free with a smile on their face this morning!

 Yesterday the hubby and I had a nice talk on our hour-and-a-half ride to the Doc’s. (More about that later…Promise!) And something about our chat led me to concoct today’s post.

 Fridays I have gotten in the habit of creating some off-the-wall “Top Ten” lists…but I think today’s is gonna be paired down to five. Otherwise, it’s gonna end up 20 pages long!

 Let me preface the list with a short (snicker…yeah, right!) explanation for the newer readers about why the heck I’m doing this. (Feel free to skip over this part to get to the good stuff. *grin*)

 When I started writing this thing, it wasn’t for pity…it wasn’t even for morale support. (Although I DO appreciate all of it I’ve gotten! I LOVE you guys!) I didn’t start writing for fame, fortune, or recognition. (But I’m still convinced someone will discover my AWESOME sense of humor and I’ll be given a syndicated column which will lead to a guest spot on Conan, my own Talk Show, Book Club, Network, and eventually…World Media Domination! But, I digress…) I started writing this because when I was still wandering the desert of “Medical Limbo” I truly felt alone with nowhere to go for “community”. There are TONS of disease-specific blogs and sites…but few “Medical Mystery Clubs” that I could find. Since then, I’ve found a few…the best being the “But You Don’t Look Sick” group on FaceBook.

 I write because I have this near-pathological need to “Mother” the World and all the "sad souls" in it! I wanted to create a place where people who were sick and confused could go for a sense of community…a place where they would know that they’re not the only ones to have felt this way and they’ll make it through the diagnostic-maze in one piece, hopefully with sanity intact. (Keep in mind, my sanity was in question before all this started, so don’t use me as an example!)

 So…today…here are the Top Five things I would like to tell “newbies” to the world of the “Medical Mystery Club”:

 1) You are not NOT N-O-T alone! I don’t care if it took us a month or ten years to get a diagnosis…ALL of us have been in your shoes to one degree or another. We’ve all felt that tiny little chill of fear of the unknown, the dizziness from the Med-Go-Round, or the gnawing frustration off pin-the-tail-on-a-diagnosis!
 So, take a moment to close your eyes, take a deep breath, and hold on tight, ‘cause it’ll probably be a bumpy ride. But there are a lot of us in the speeding train with you…so the extra bodies to bump off of tends to make it a bit less painful! *grin*

 2)You are your own best advocate! You know your body better than anyone else…what feels “normal” and what’s not. You know, deep in your gut, when something is functioning properly and when the circuits start to short out.
 For many chronic illnesses, catching them early is the key to controlling them with the least amount of “systems damage.” If you KNOW something is WRONG, keep pushing until someone listens. Don’t accept someone telling you, “You’re completely healthy,” if you know you’re not. Be POLITE ( You catch more flies with an ounce of sugar than a pound of salt, per my Grandmother’s wisdom!) but be FIRM.

 3) This one kinda feeds off the last one…Knowledge IS power! (Yep, the Saturday Morning PSA’s were right!) Read, research, and ask questions. LOTS of questions!

(Source: open-up-your-eyes2)

 It’s so much easier to understand how your body is malfunctioning if you understand how it’s supposed to work in the first place. Be an “informed” and “empowered” patient. From my own personal experience and the experiences of many I’ve talked to, this helps speed up the diagnostic process…knowing what to ask about and where to steer the Doc to look for answers.

 4) Remember…they work for you! So many people I’ve talked with and read about have had the wonderful fun of NOT being taken seriously! I’ve personally had that fun time myself…If the Doc isn’t listening to you, taking you seriously, or willing to “play nice”…remember you’re paying his bills, so fire him/her!
 You have the right to find a new Doc, one who will work WITH you to ensure your health!
 Now…I’m NOT advocating not listening or following their instructions. And I’m NOT advocating blowing them off simply because you don’t like what they say…I’m talking about the ones who refuse to listen to the words coming out of your mouth! Or, the ones who are unable to pull their craniums out of their posterior end to actually look for an answer.

 5) This one is a COMPLETE departure from the last few, but just as important for the sake of one’s peace of mind…My dear friends, it’s OK to cry!
 No one, and I mean NO ONE, no matter how they may appear to you, is strong all the time! NO ONE is positive all the time! Even Wonder Woman and Super Man had their moments of self-doubt!
 There are going to be days when you are so far down-in-the-dumps you can’t even see the clouds, let alone any damned silver lining! There are going to be days when you loose enough faith in yourself, you can almost believe you’ll never leave your bed again. There will be days when the concept of “turning a frown up-side down” makes you puke WHILE crying! AND THAT’S OK!
 Honestly, that is one of the BEST things community is for, to be strong for you when you can’t. To smile for you when you can’t. To “hug” you while you cry and be there cheering you on until you’re strong enough to kick off the covers and emerge from you’re “cocoon.” BECAUSE WE’VE ALL BEEN THERE AND UNDERSTAND!

 So…to wrap this up before I hit the showers for yet ANOTHER Doc appointment…from the bottom of my heart, THANK YOU to all the people who have hung in there with me from the start of this insanity! And WARM WELCOMES AND HUGS to all the newbies and searchers who pop in from time to time. I hope you find something that helps you on your journey to “As Healthy As It Gets.”

 One last thing…I’m NOT a Doc or a Psychologist! Just a currently house-bound nut-job whose been “fighting the good fight” for a while, who is offering advice based on personal experience and any speck of knowledge gained along the way. DO NOT take anything I say as medical or legal advice…it’ll only get us both in deep doo-doo! *grin*

 Doc’s are AWESOME people we couldn’t live without…sometimes ya just gotta find the right one to get the help you need! (Wipes sweat from brow at all the Law Suites narrowly averted…)

Gratitude And Unicorns

 This morning I woke up and did my standard, roll-trip-stagger-shuffle to the living room and opened the front door to check the weather…there is such a peaceful, gentle, rhythmic not-quite-Spring rain falling…*deep sigh* I took a deep breath with my eyes closed, taking in the scents of the leafless trees and the “clean dirt” smell tossed up by the droplets.

 Today, not matter what else follows, all is right with the world and I have found my moment of “peace and balance.”

 Last night, as I did my “pre-falling-asleep” e-mail check, I realized that the planets must have aligned just right to produce some form of “bitch-vortex” in the universe! Not even worrying about snarky e-mail or comments I may or may not have received, the number of other bloggers I follow who were ruthlessly attacked with bitter words…the number of random biting/angry posts on various social-networking sites…I was completely flummoxed! (That is such a FUN word! Glad I found a way to use it. *grin*)

See...sharing even makes
creepy, button-eyed dollies happy!

 Soooo….me thinks I should start the day’s sharing with a new site I discovered. (Following totally random links CAN occasionally pay off!) This page is DEFINITELY more in line with the way I prefer to view the world and life in general…so here goes!

 “How To Cope With Pain” is a new blog I ‘tripped” across that looks like a beautiful place to go to help maintain a positive outlook on life, even when you’re hurting. The post “An Invitation To Practice Daily Gratitude” invites everyone to come up with three things (ONLY 3!) a day that they are thankful for. A simple, positive way to start your day!

 As I read through the past week’s posts on “Regina Holliday’s Medical Advocacy Blog” I could not choose just one post. There were two in particular that literally brought tears to my eyes. The beauty and strength of the two women whose stories they told…truly inspirational! Both “Journey To Joy: Painting Regina Benjamin Benjamin, MD” and “Out of Reach: A Jacket For Joann Klindenst” are entries you shouldn’t miss!

Keeping with my theme of “Gratitude,” Selena at “Oh My Aches And Pains” show tons of gratitude for her friends that are helping her through her Hep C treatment with “Can you Feel The Love? I Can, Thanks To You!”  

 Hey! Check it out…”Rellacafa” does it too! “Friday Favorites: 2^nd March 2012”  is sharing her five favorite links for the week. I honestly haven’t had time to check them out for myself, but I’m loving the titles of the blogs and posts! (I think I’ll “hit them” on the way to the GI guy today. Read ‘em to the hubby as he plays chafer for me!)

 “Conversations With My Disease - My New MindBodyGreen Post” at “Going Down Swinging” made the hairs on the back of neck stand on end! But in a completely good, beautiful way…WOW! Talk about the proverbial making lemonade out of lemons!

Mary at “Shuffling Along With Parkinson Disease” Shared a hot tip in her post “Why Haven’t You Posted?” about a computer program she’s ordered that will type as you speak! This is a slice of awesomeness for those of us with “twitchy hands”! Mary and her hubby have Parkinson’s disease, which we all know can cause movement issues…but most people are unaware that many autoimmune diseases can cause tremors, as well as the side-effects caused by the meds used to treat them! I will def be watching to see how it works for her!

 Here’s another good share! Crippie at “Crippie’s Corner” shares the results of her quest for a heating pad that WORKS with “Everything Went Better Than Expected”. I love it when others have done the research and share their results with the rest of the world! Thanks Crippie! I know where I’m headed today…LOL!

 And finally, to wrap up today’s post, I give you…."The Bloggess!" Because EVERYONE needs a good laugh, or just a serious bout of confusion! (I swear, this woman and I either share a brain or serious side-effects of medication!) “Unicorn Success Club” had me ROLLING in my chair! I think I’m in love with this blog…

 Now I’m off the shower and to dig through my “laundry” for something un-smelly enough to wear to a Doc appointment. May you all have a day filled with laughter, gratitude, and no pain!

Got My Underoos On!

 (Deep breath…) Good morning!
http://info.wegohealth.com/HAWMC2012 and you'll be able to start posting once April rolls around. Looking forward to writing with you!

Not really Underoos,
but close enough!

 I was prepared to sit down this morning and write a little blurb about my FUN with the Doc yesterday and the lessons I learned. Then I “accidentally” (accidentally because I WISH I hadn’t read it on purpose!) read something that somewhat changed the flavor of what I’m-a-gonna write. Or, it actually just cemented the mentality I wish to fight against…for the betterment of all humanity! (Yep! I’m wearing my Wonder Woman Underoos today!)

 Back story: Since Saturday, I’ve been fighting painful swelling in lymph nodes under my chin. Monday, the swelling began migrating down my neck, since the nodes down there were feeling left out and wanted to join in the party! I called my Doc and they’re booked solid! *sigh* OK…no problem…simple quandary, right? I mean, it’s either inflammation or infection. OK, we’ve got a Prompt-Med I’ve used in a tight-squeeze before…cool!

 So…yesterday I made the arduous journey to Prompt-Med. (It was really an easy trip, but it sounds better for dramatic effect.) After your standard hour wait, I got in. Oh, and I came prepared! I had my print-out of my med-list complete with allergies, politely informed the Nurse I had Scleroderma and Fibromyalgia, then sat back to wait for the Rent-a-Doc.

 First off, when she came in she DID NOT wash her hands OR put on gloves before touching my neck and face region. (YUCK!) She hadn’t even looked at my chart. (REALLY?) She didn’t check for any signs of sinus pressure or infection…simply squeezed my throat (will-power…can’t…kick…woman causing…pain…), looked in my ears and down my throat. She proceded to tell me there’s no infection and then told me to try OTC anti-inflammatory. (Hello? I LIVE off Advil!) THEN she prescribed an anti-biotic.

 OK…now I’ve never been to Med school, but aren’t anti-biotics for infection? When the Nurse came back in with my instructions and script, I asked her to verify with Wonder-Doc whether or not there was any signs of infection. (Nervous Nurse now darting from room, twitching just a little.) She came back a few minute later to re-affirm there was indeed NO infection. Just inflammation.

 Here’s a Sclero fact I POLITELY shared with EVERYONE at Prompt-Med…Scleroderma is an autoimmune disease that can affect the endocrine system causing INFLAMMATION in the lymph nodes! I also POLITELY informed them that the over-use of unnecessary anti-biotics is what gives rise to strains of anti-biotic resistant bacteria. Needless to say, by the time I walked out (with copies of everything to add to my mobile file-folder) EVERYONE was glad to see me leave. (And I SWEAR, I WAS polite! I was even SMILING!)

 So..onto this morning…A few days ago, I joined the WEGO Health community and signed up for their 30 Day Writer’s Month Challenge. They sent be blurbs to post to my blog (*see insert below) as well as Twitter and FaceBook. So, wanting to do all I can to incourage others to play with me, I posted/tweeted them!

 My FB post was answered by Nursing-Student X with this comment, “Bad Fat, don't eat it; Blood sugar, test it yearly. Fruits and Veg: eat them. There you go. Its my health haiku. Otherwise, I'd have to write a long nasty chant about compliance with your treatment regimen and knowing all the names of and r...easons for prescription of your drugs, how no, you didn't (you in the general sense, here), did not go to medical and/or nursing school so your interpretation of your labs means nothing until you take (at the very least) an Anatomy and Physiology and a Microbiology class, so don't. Just don't. Otherwise, if you aren't going to take part in your treatment regimen, don't expect any of us to take care of you, too seriously, because you've already proven you should be King/Queen Practitioner of the Universe, with all of your own diagnoses and prescriptions. Take care of yourself…”

 OK…now, I would NOT want to invade anyone’s privacy or put anyone out there as any form negative example (just played insane charades with daughter to find that word in swiss-cheese memory! Holy Cow!), but FB isn’t all that private and it was posted as a public comment. That being said, I could not help but be extremely offended/hurt/angry/beyond confused by this. Especially since I am a HUGE advocate of obtaining copies of all your medical records and learning to decipher and understand them. If I had not done this myself, I’d STILL be in “diagnostic limbo”. And isn’t fighting attitudes within the medical establishment like this just one of the many things Health Advocates do?

 OK…sorry about the “preachy” side-step there…It’s just that this comment only cemented my resolve to continue fighting the good fight to bring Medical Truth and Justice to all chronically ill peoples of the World! (OK, maybe the Wonder Woman Underoos are a little tight and cutting off the blood flow too my brain….*grin*)

 What’s the moral to my story today? You and you alone are responsible for your health and the choices you make. If you choose to be a person who never questions their Doc, that is your choice and I will SUPPORT you 110%! But, if you choose to be a "Fox Mulder" and question everything and trust no one…that’s also your choice and don’t ever let anyone tell you you’re wrong! The Truth is Out There! (Falling out of my chair laughing like the geeky goof-ball I am!)
　
 *Hey everyone - I just wanted to tell you about a new activity I'll be doing this April. The Health Activist Writer's Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you'll join me in writing every day about health. It's going to be a lot of fun and I'd love to see what you have to say about each of the topics, too. All you have to do to join is sign up here:

Poo-Piñata And Snow

 Wow! This morning is BEAUTIFUL! Last night, while the world slept (OK, while Indiana slept…but during the Super Bowl, you’d think we were the center of the World!)…where was I? Oh yes…Last night, while the world slept, it snowed. SNOWED! When two days ago it was just shy of 70 degrees, now it snows!

 But it does make for some lovely scenery…and the obligatory achy and stiff joints.

 Hubby started his new schedule today. He went from 2^nd shift to a 7:00 AM to 7:00 PM schedule, with occasional days off promised. We’re keeping our fingers crossed about that one!

 On another note, today I started my “countdown to GI guy.” Yep, Thursday is my first appointment with Doctor GI…and I’m currently torn about something. This is an age-old question we “lucky few” with health issues have repeatedly danced around. Do I a) leave certain health issues to run rampant so the Doc can SEE them or b) do I take necessary steps to insure my physical comfort and hope the Doc takes my word for it?

 Wondering what I’m side-stepping here? I am officially a “poo-piñata”!!! Yes…I have reached the point where I am like a play-dough press…put something in one end to get something out the other…My colon has decided it wants to go on permanent vacation. Bowel movement? Is that part of a Symphony or a new Political group, ‘cause it sure ain’t something my body believes pertains to it!

 Here’s a Sclero fact (that also pertains to a ton of other autoimmune diseases) dismotility is a pain in the behind! (Please pardon the BAD pun there…couldn’t resist!) Dismotility happens when either damage to the nerves, muscles, or the smooth lining of the colon causes either a reduction in how much the darned thing squeezes, or it stops moving altogether!  Dismotility can affect other areas of the body like the throat and esophagus, stomach, or even the lungs. But, today the one that’s at the forefront of my mind is the colon. *sigh*

Trying to think positive!

 So…what’s a girl to do when stool softeners only make you fart? (And my kids are SO pleased with THAT side effect!) I swear, I am a walking whoopee-cushion from the land of Sewer-Stench! Do I go the distance and eat the evil laxative? Do I eat more of the safer-route softeners and hope? Or, do I let it go and let the Doc see how full of s*#t I REALLY am?

 Why am I writing this? After all, my Mother always told me Ladies don’t talk about “bathroom” issues in polite company. Well…if you haven’t figured it out yet, I’m not exactly that lady-like. And besides, these are very real issues many of us deal with. So why not talk about it? Life “stinks” (sorry…another pun I couldn’t pass up) when you’re far from regular and Jamie Lee Curtis and her miracle yogurt can’t help you!

 I’ve read there are meds that can help your digestive system remember how to play nice…I’ve read stool softeners should be used sparingly with Systemic Sclero…I’ve read laxatives are BAD because your body can develop a dependency on them and forget how to “go” on its own…(not that it’s doing that anyway!)

 So…how do you “move” forward with this problem? (I know…now I’m just being silly.) After all, when you reach the stage of poo-piñata AND you tend to trip and bump into things on a “regular” basis…(insert seriously goofy giggle here) the fear of exploding can be very real!

 *sigh* Four days and counting…I guess I’ll just have to wait and see how everything “comes out in the end!” (OK, now I’m rolling in my chair! Maybe I’ve had enough coffee for one day!)

Sclero-Huh?

 Yesterday I promised a blurb about Scleroderma. And I’m betting you noticed I didn’t write it. Instead, I “unplugged” from the computer and spent the day lost in thought instead.

 I had the word program opened on my notebook….but nothing “came” to me. I mean, should I write a “technical” piece, quoting sources with footnotes and such? Should I make a weird attempt at finding humor in pretty much a humorless disease? I thought long and hard about writing something along the lines of “What Scleroderma Means For Me.” But…the truth is…I don’t know what it means for me! Other than uncertainty. (And that's pretty much a Universal state of life for everyone!)

 So, I spent the day avoiding the computer, stitching on a craft project, and watching movies with my daughter. (A VERY nice way to spend the day…)

  And then it hit me! Sclero is like any other autoimmune disease. There may be one or two sets of “diagnostic symptoms,” but the disease itself differs from person to person, no two experiencing it the same way. So the only true statement I really could make, for me (and everyone else) I'd already made...Sclero is a life of uncertainty.

 Of course, there are a few givens. Such as, Sclero is what happens when your immune system, for one reason or another, goes hay-wire and begins attacking your body via the collagen. (It just LOVES to make collagen!) The list of things this can cause is seemingly inexhaustive…the skin on your hands and face can tighten and harden. Your muscles can loose their elasticity, causing problems with weakness and mobility. Your vascular system can loose it’s elasticity causing several different types of hypertension. This hypertension can then lead to kidney failure, loss of motility in your throat and colon, pulmonary problems, or heart failure.

 Visually, the excess collagen can cause other problems, such as your hair can fall out. You can develop areas where you no longer produce pigment leaving white spots. Conversely, you can develop areas where you produce too much pigment, developing abnormally dark spots. The attacks on your muscles and tendons can cause “sclerodactyly” where your fingers curl into your hands like claws. And, of course, the vascular constriction can cause your toes and finger to turn white and cold from lack of blood…Raynaud’s.
There are TONS of other problems I’ve read about associated with Sclero but, like most people with autoimmunes, I don’t have many of them…yet.

 Another thing I can tell you is when I first heard the word, I ran (OK, waddled…but it was a quick waddle!) home and read three books, one right after the other! The first one, “What Is Scleroderma” by Janet Wilson was…at best a waste of money. It was extremely repetitive and hard to follow, as if it was a literal translation from another language. The information it did give seemed to pertain mainly to skin involvement without going into any detain about the other forms the disease can take.

 The next book I read, “Voices Of Scleroderma Volume 3” by the International Scleroderma Network, actually scared the snikies out of me! Not that it was a “bad book”…on the contrary, it was a beautiful book. It was filled with great info and personal accounts from patients, caregivers, and survivors. What scared me was the “In Remembrance” chapter. What I gleaned from reading it was the #1 cause of many of the deaths was mistreatment of complications by Docs who didn’t know how to treat Sclero.

 In retrospect, I should have read “The Scleroderma Book: A Guide for Patients and Families” by Maureen D. Mayes, M.D. first. It is an awesomely informative book with EVERYTHING you ever want to know about Scleroderma packed into the pages. Reading this book removed a lot of the fear and confusion for me, helping my brain get to a place where it could think its way through it. This book should without a doubt, be the first book a newly diagnosed person reads! It’s also a perfect book for anyone who is living with Sclero, whether a long-time survivor or family and caregivers. After you’ve read this one, then go back to read “Voices of Scleroderma.”

 This isn’t exactly what I set out to write…but it’s a good start! I mentioned before that I would love to be one of the people that write the blogs that educate an inspire people to do great things and further awareness and understanding. But…how about I just take a cue from one of my favorite blogs, “Crippie’s Corner” and simply include a Sclero fact a day? I think my attention span can maintain a certain level of seriousness long enough for that!

It's Good To Be A Goose!

 A new friend challenged me yesterday to start every morning with a list of "things I love about today." Her argument is happy and positive thoughts are contagious, and they set the mood for the rest of the day. Can’t say I disagree with her reasoning…So here is my list for the day!

 Today I love...spending time with my family, reading a good book, texting with friends I miss, getting messages from new friends, watching my birds do crazy birdy things, and eating food that's good for me!

 All in all, not a bad way to start the day! If you’d like to leave a “comment” I’d LOVE a list of the things you love about today!

 OK…now, I’ve got something else kinda bugging me…another new friend, Cassandra, was awesome enough to link her page to my blog. In her description she mentioned that people could learn more about Scleroderma…and I had a minor epiphany. Denial is NOT just a river in Egypt!

 I realized I have been living in that “zone” that I went to when my Mother was diagnosed with terminal colon cancer…It’s not that you’re exactly in denial about the situation, it’s just that it doesn’t feel real. Like you’re watching a movie or reading a book about someone else’s life. (I’m sure there’s a psychological term for it, but I’m too darned lazy to look it up! *grin*)

 So…starting tomorrow (Hey…I’m a born procrastinator. Give me a break!) I’ll post something once a week about what the heck is wrong with me! Trust me…it’s not that I want to shove my illness down anyone’s throat, but knowledge is power and there's even greater power in sharing knowledge with others. And in reality, all autoimmunes are kinda like distant cousins at a family reunion. After all, our bodies seem to have gotten bored with waiting around for the next flu or cold and turned their overactive sense of destruction on us!

 I PROMISE it won’t get too in-depth, boring or technical…after all, my attention span and sense of humor couldn’t possibly maintain that level of adult-like behavior long enough to write it.

 So…today, before I attempt to be serious for a day (HA!) I’ll finish up with the top ten reasons it would be good to be a goose!

 1) This one is just TOO obvious! You can poo where ever and when ever you feel like it! Yep, no signs of constipation here! (Lucky buggers…)

 2) You can raise all the noisy-stink you want to and people think it’s cute! After all, aren’t there a million cd’s of soothing bird calls…(OK, maybe the cd’s don’t involve geese, because they ARE a noisy bunch…but it was worth a try!)

Chicken, duck, and goose eggs.
These things are HUGE (and yummy)!

 3) You can make a three-egg omelet out of just one of your eggs! I mean, have you seen the size of these things! They’re HUGE! (Please don’t point out that geese neither cook nor eat omelets…it’s one of THOSE mornings and I’m on a roll!)

 4) No shoes! (Need I say more?) Geese get to run around barefoot all day and no one ever fusses at them! Oh…to dream the impossible dream…

 5) They NEVER have to worry about laundry. They get dirty, they climb in the pool, wash off and go. Their feathers get worn out, they molt, get a hot new seasonal look, and go!

Don't you wish bathing was this
much fun?

 6) They get to play in the mud all they want and no one ever yells at them for getting dirty and they never have to worry about germs!

 7) Geese don’t sleep like other birds…they play, nap for an hour, then they’re on the go again…all day AND all night! So….they OBVIOUSLY NEVER deal with INSOMNIA! How lucky a bunch are they!?!

 8) (I have to include this one because we are currently OVERRUN with cats who believe it is their God-given right to lounge on the keyboard when I’m attempting to type!) Cat’s don’t bother you because you’re HUGE! Have you ever seen a cat chase a goose? Nope! But I have seen a goose chase a cat! (And a dog…and a raccoon…and the poor guy who reads our meters...)

9) Geese never have to clean their room! If it gets too messy (insert poopy) they just move to a new spot. Give it a week or a good rain, and the old spot is good as new! (That would be such a time-saver when it came to cleaning!)

 And my #1 favorite reason it would be good to be a goose….(drumroll please)

 10) Geese don’t get autoimmune diseases! I’ve read four or five books (ya loose count after a while) about geese, and of all the health problems that they could face…there is no reported evidence they EVER get an autoimmune disease of any type….LUCKY GEESE!

"I'm king of the World!"

 Here’s hoping your day is filled with geese and laughter!