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!

Look Ma, I'm Sharing Again!

 Wow! Good afternoon world! I wasn’t too sure I was gonna make a post today…woke up with a borderline migraine. So…you take the migraine med, you take the pain meds to help until the other kicks in. Then you take the vertigo pill because the world is currently approximately 45 degrees off its axis. Then you have to take the nausea meds because the pain and migraine meds cause severe nausea. Then…well, by then you’ve forgotten you even have a head, much less a migraine-in-the-making!

 Ah…the fun of the med-go-round.

 So, here are some of the awesome and inspirational sites I ran across this week!

This is Cassandra! An amazing
young woman you need to
check out!

 First up is an amazing young woman I met on FaceBook. "Cassandra’s Journey With Juvenile Dermatomyositis & Juvenile Arthritis" is truly inspritational. Cassandra is 13 years old and already one heck of a trooper! She puts herself out there to raise awareness for Juvenile Arthritis with just the right mix of realism and optimism. Through her page she share updates on research and treatment, positive thoughts, and updates from the “Buckle Me Up” International Autoimmune Arthritis Movement."

 This week Crippie from "Crippis’s Corner” had a fun post called “Crippie Rolls Down Memory Lane” where she shares her memories of crippie-friendly dolls. I had no idea Mattel ever put out a Barbie Doll in a wheelchair! (Oh, and just for the record…I am SO getting the Zombie doll!)

 Next, we have a wonderful piece from Maria at “Going Down Swinging.” It’s called  "4 Life Lessons Coaching Girls’ Basketball Taught Me.” Her writing is eloquent, peaceful, and uplifting. This is another must-read!

 I love reading Caf at “Rellacafa.” She’s a fun and thoughtful young lady from Australia who answers letters with wonderful words of wisdom and encouragement. Her posts are always a great way to start the day!

 Last but definitely not least, Shruti at “Lifestyles of the Ill and (Mostly) Blameless” writes an amazing article entitled “Painkillers Can’t Relieve The Pain Of Painkiller Stigma.” In it she discusses the media’s portrayal of the illegal use of prescription painkillers and the impact it has on real life pain patients. Not only has it made it harder for many of us to obtain the meds we need, but it also has created a social stigma that sometimes hurts almost as bad as the physical symptoms!

 Well…there you have it. These are but a few of the good finds I tripped across this week! I hope you can find the time to give them a peek and find something both educational and enjoyable!

Trade-Offs And Pay-Offs

 60 degrees! 60 DEGREES! It’s the last day of February and it’s flippin 60 degrees outside! Ya gotta love it! The rain has even stopped for now and the Sun is shining!

 Happy World Rare Disease Day 2012! I swear, if I had a good internet provider, I’d spend the day on-line streaming everything just to see what’s actually happening outside of my isolated corner of the world! I’ve never been much of a joiner, but sometimes it’s a good thing to know you’re not alone…that there are people all over the planet that live with the same aches, pains, and challenges…to see how they can inspire you…*sigh*

Pearl, my homicidal gander.

 Speaking of inspiration, there are several AMAZING photographers I’ve been “following” on-line…and they inspired me to start carrying my sad, little digital camera around with me. What I’ve managed to produce is the most incredible batch of blurs! No matter how fast those things shoot…they DO NOT shoot fast enough to accommodate for the shakes!

Aidan's pic!

 Maybe I should just go with it! It could be my trademark…beautiful blurs and swirls of color. I could tell people I was doing it on purpose, a kind of commentary on how the world and life around us moves so fast, that’s it all a blur!

 The Critics would eat it up and talk about how much of a visionary I am! My work would be displayed in the finest galleries and slapped on magazine covers and Coke cans! I’d be famous…and all because my hands shimmy and shake more than Tina Turner’s hips ever did!

Mother, peral's mate...equally as homicidal!

 OK…I’m back from Fantasy Land now. *grin* It’s such a small thing. I can’t use a digital camera…so what? In the grand scheme of things, it’s completely inconsequential. But…sometimes when you spend your days accepting the bigger things that are now part of your past, it’s the little things that drive home the fact that things are different now.

 So, you find ways around. For instance, I may not be able to take a decent picture, but my youngest son…he’s got a GREAT eye! And, had he not been taking the pics I couldn’t, I may never have found that out. Which just goes to show…sometimes the trade-offs have unsuspected, wonderful pay-offs!

Aidan's pic...I LOVE this one!

Dark Gift

 It’s a little after 4:00 Am and, as is becoming my new “norm,” I’ve been up for almost an hour. And quiet hours quickly get filled with thoughts…

 As I sat here this morning sifting through the mountain of stuff in the various and sundry in-boxes of my “social networking” it dawned on me just how much has changed in the last year. How much and, honestly, how quickly…

 My mind keeps wandering back to a passage from “Dancing At The River’s Edge” by Alida Brill and Michael D. Lockshin, M.D. In the book, Ms. Brill talks repeatedly about the fact that we (those living with chronic illness) move in different Worlds from those inhabited by the “healthy people.” She writes of how we speak our own language, keep time differently, and gauge our accomplishments differently. I remember reading this and thinking it made perfect sense. But I don’t think I fully understood what she meant until the all-too-early hours of this morning.

 In the last month, I have noticed fewer and fewer comments, messages, and “likes” from my friends from my “former” life. There have been fewer announcements about “get togethers” and whose band is playing where…These announcements have been replaced by news bits about “Awareness Days” or “Tips For Beating Fibro Fog.” There are new “friend requests” involving tag-lines of “Spoonie” or “Chronic Illness.”

 My inbox is still filled with the normal joys of a daughter’s first softball game, the excitement of attending a first Formal Dance, and a husband competing in a “mud crawl.” But these “normal” announcements are in a new context…The joy of not only watching her daughter play in her first game, but BEING ABLE to be there and watch! The excitement of attending her first Formal becomes something more when you realize this is a 13 year old battling Juvenile Arthritis and the pictures are interspersed with pictures of her infusion treatment. The laughter at trying to figure out exactly what a mud crawl is also brings a smile of pride, since he’ll be competing wearing a Fibromyalgia Awareness T-shirt with hundreds of names on it…one of them yours!

 This will sound REALLY odd, but becoming sick has opened doors to a whole different world for me…I won’t necessarily tell ya the ride is worth the price of admission…not sure anyone would really claim that. But I will claim that this new chapter has been its own dark gift. In the last year, my eyes have been opened to so much that, as a “healthy person” I never had the time to see. (OK, never took the time to see.) The books I’ve read, the people I’ve “met”, the different Realms that exist inside this strange, New World I’ve passed into…these are things I probably never would have learned of from the other side of the border.

 And yes…I did refer to this new life as a dark gift. I think it would be a strange person who would want what so many of us live with, yet it‘s given me opportunities I may never have taken. I’ve learned so much about all the “amazing” ways a body can turn on itself…and all the ways the human spirit can rise up to meet those challenges! I’ve stumbled across the sadder folks who are stuck on the anger, and I‘ve encountered even more who have chosen to greet each day with joy and hope. These latter are the ones I gravitate towards…emotions are contagious, and I’d much rather catch “hopeful joy”…

 And even the “darkness” has been it’s own opportunity to truly appreciate the light in my life. I can tell you, I never TRULY appreciated how good it felt to wake up every morning until I began waking up feeling like a bad batch of taffy!

 Before, caught-up in the day-to-day work, family, bills, etc. etc…I never gave myself a breather to step back and be grateful for all I have in my life! Like most, it was the stress and worry that drew my focus.

 Now…I spend most mornings watching the sunrise, completely amazed at it’s constant beauty. I take the time to not just talk to the kids, but talk with them. I understand just how lucky I am to have a loving, supportive partner…And that may be the biggest gift I’ve been given…gratitude…for every day!

How To Be A "Fox Mulder"

 “Knowledge is power!” “Reading Is Fundamental!” “The more you know, the more you grow!”

 Boy…I guess those Saturday morning PSA’s sandwiched in the middle of my cartoons DID work, because years later, I STILL remember them! (Along with the words to most of the Schoolhouse Rocks series…*grin*)

 And ya know…they were right! Since all this started a year ago, I have read more non-fiction than in the last 20 years combined. And it HAS empowered me! Reading has helped me realize that Docs aren’t the Gods I used to believe they were…the “unquestionable” beings I was raised to place total and perfect trust in.

 Reading has saved me months of painful suffering. (“Hey, ya wanna check my flippin’ gallbladder?” “Hey, have ya thought about trying Neurontin?” ) Reading has also helped me realize that my health is ultimately in my hands…my responsibility…my RIGHT! Two books that have helped immensely in that education are “How Doctors Think” by Dr. Jerome Groopman and “The Empowered Patient” by Elizabeth S. Cohen.

By Jerome Groopman

 “How Doctors Think” was a complete eye opener! The fact that it was written by a Doctor only added to the “Really!?!” factor. Dr. Groopman interviewed countless Docs and Technicians as well as patients, to come to the conclusions he presents in hopes of helping current and future patients avoid the pitfalls of miscommunication, misdiagnosis, and unneeded suffering. He explains the system that fosters too little time spent in the examination room, pushing unnecessary meds, and pigeon-holing patients with labels that follow them from Specialist to Specialist.

 The book opens with the recounting of one woman’s 15 year (Yep, I said 15!) ride on the healthcare merry-go-round that almost cost her her life! If not for one Doc who threw out all the opinions of previous Specialists and thought “outside the box,” she probably would have ended up dying. (Comforting thought!)

 This book is an excellent resource for figuring out which buzz-words will break the set pattern of the modern-day Q&A examination, when to find a new Doc, and how to force a Doc to listen. I can’t recommend it highly enough for anyone forced to deal with Docs on a regular basis! (Or even if you only deal with them once a year…)

 “The Empowered Patient” is another one I can not recommend enough! (And I’m only half-way through it at this point!) Ya gotta know when the first chapter is titled “How To Be A Bad Patient” it’s going to be a fun ride! This book is fun to read, in plain and simple English, and packed full of good info!

 Ms. Cohen covers several points that were covered in Dr. Groopman’s book, but from the patient’s point of view. There are worksheets and websites included to help you be as prepared as any Boyscout for any eventuality that could befall you during your Doc visit odyssey! This book has already inspired me to reorganize my mobile-file-folder of Medical Records to make it easier to navigate during visits. (The mobile-file-folder was a tip I picked up from Dr. Groopman, by the way!)

 I can almost guarantee that reading these two books will turn you int the Fox Mulder of the Medical World…trust no one and question everything! (I'm such a geek!)

 Now that I’ve done my part to promote Medical Dissonance, I’ll just finish by saying I hope you find these two books as eye-opening and down-right enjoyable to read as I did!

Ponderings Of A Spaz

 OOOohhhh another morning of seeing 3:00AM from the wrong end of the sleep cycle! I foresee much slap-happy behavior in my future! But, on the up side, I actually got a nice soak in the tub, including clear-cutting the forest that used to be my legs! And I managed it all without ANYONE banging on the door or screaming my name! (Score 1 for the clean woman at the keyboard!)

 This morning, through the fogginess of already desiring a nap, I’ve been wondering…how do other people “deal with” their chronic illnesses? Do you embrace it? Do you do your best to hide it and ignore it? Do you wear shirts that say, “Ask me about (fill in the blank)!” Do some people go through a “born again” phase where they’re door-to-door Preachers for Awareness?

 Have you come to a place where you’re just like, “OK, it’s there. So what?” Or, do you join all the on-line support groups and chat rooms where there are others who understand you?

 Is there a happy medium?

 Or is the odd world we move through broken down into strata like exposed rock on a cliff? You’ve got your Advocacy and Awareness Warriors. You’ve got your basic “I need to mother people” generous souls. You’ve got the fanatics that are bound and determined the entire WORLD will know the name of (fill in the blank). Then there are the fairly quiet group of “let’s keep it invisible and just blend in”.

 And, of course, there’s the group that drives me the farthest up a wall…the victims. The “why me’s” and the “it’s not fair’s”. (Yes, I know people go through these stages. It’s normal and healthy…but sometimes people get STUCK! Those are the people I'm referring to here.) (No hate mail about this one, please. *grin*)

 In my humble opinion…I think being diagnosed, especially after an extended time of already being ill, creates it’s own “phases” of comfort. And I would hazard to say that the longer it takes to receive a definitive diagnosis, the deeper in people dive!

 Phase one would have to be the “Born Again” phase, when you want to tell EVERYONE there’s actually a name to what’s funkin‘-up your groove. You wear the T-shirts and the bracelets. Perhaps you join every group and e-list on the wide world of webs. You don’t just jump in feet first, you dive in like a pro! (OK, yes…I see a SLIGHT similarity there…Ssshhhh!)

 Phase two hits and you mellow a bit. If someone asks, you’ll tell then all about your illness, but the bracelets kept getting caught on everything and the T-shirts have been retired to the bottom of the drawer. You hit the computer and check the lists and pages once a day, if there’s time, but you no longer read and reply to EVERY post…only the people you’ve come to feel close to.

 Phase three can go one of two ways…I think if you’re a more “mothering” soul then you become the understanding “voice” on the lists that saves their advice and “reply” button for the newbies that are just hitting Phase one. You kindness helps steer them in the right direction. Your soothing words helps them find their way a bit quicker to that place of peace where you acknowledge it’s part of your life, but no longer IS your life.

 Phase three could also take you to the place where you can say, “Yep, I live with it.” but that is ALL you wanna say about it. You’re the one who refuses to “act” sick in any way. You are the very definition of living your life DESPITE chronic illness. You are the ones who have found their peace and signed the “mutual habitation” treaties with your disease. (I think you’re also the ones I envy most.)

 As the sun begins to rise and the time to waddle outside and “release the birds” draws close, I’m just left wondering which way I‘ll go with all this…is there any hope for a spaz like me? *grin*

Sharing Is Caring!

 Good morning!

 I figure that lately I’ve been stuck in a rut…it happens! You get side-swiped by something that knocks you into the ditch…and you spin your wheels for a while before you notice you just ain’t goin’ nowhere!

 Yeah, well…the last week my attepts at humor have began to border on whining…(Oops! Sorry!) So…enough about me already!

 Last night I FINALLY caught up on my “blog reading” and found several that were too good not to share.

http://agirlwithguts.tumblr.com/post/18045124406/how-chronic-disease-affects-the-whole-family

 Sara Ringer (A Girl With Guts) at Inflamed And Untamed writes an excellent article about the many ways chronic illness can effect your entire family and the also how the guilt and pressures this produces on your part effect you. I swear, this woman is a force of Nature! It’s no wonder she was recognized by the WEGOhealth Health Activist Awards!
http://www.diseaseonmysleeve.org/ 

 Disease On My Sleeve This is an amazing site just for the fact that it’s run by and for teens. It’s real and raw, but positive, informative and supportive! (I can’t help it, I love seeing the younger crowd being proactive!)

http://www.ohmyachesandpains.info/2012/02/can-you-help-me-get-through-hep-c.html

 Selena at Oh My Aches & Pains! is a big-hearted, caring, fun woman who is getting ready to start a potentially difficult round of treatment for her Hepatitis C. She is asking friends, fans, and anyone with a kind and generous heart to commit to helping her make it through the 168 day treatment, one day at a time!

http://www.prefontaine44.blogspot.com/2012/02/my-mindbodygreen-post-4-benefits-to.html

Going Down Swinging: A RSD/CRPS Blog "4 Benefits To Being Imperfect” is a wonderful little reminder that it is so much more rewarding to stop fighting Perfectionism, and instead find joy in who we are…imperfections and all!

...And last, but oh, so NOT least, a woman who appears to be just as crazy as I am! I adore her bawdy wit. (Warning: For the more discerning readers, there is foul language involved.) Besides, what's not to like about someone who is a reaccuring Comic Book character and owner of a fine, stuffed weasel!
The Bloggess...need I say more?

 So, there you have it! Maybe some "Old Friends" you already follow, maybe a few new ones to discover! I hope you enjoy them as much as I did!

Misspellings And Inquiring Minds

 “Holy monkey-meat, Batman! Looks like she’s winding up for another rant…I think she’s gonna blow!”

 “Quick, Robin! To the Batcave!”

 (insert uncontrollable laughter here)  No…really…I’m not gonna rant again. Promise! I just have a question I’ve been rolling around in my head like the mud balls my Mom used to yell at me to put down and go wash my hands. (I just haven’t figured out how to “put it down” and go wash my brain yet…)

My daughter and I made our own
Awareness Bracelts. Good fun and
therapy!

 How do you know when you need to go to the Docs? How do you figure out when you’re actually “sick” in the everyday way, when it’s a new symptom, or just something to ignore and wait for it to go away? (Keep in mind, I’m still new to this “illness” thing!)

 Sunday I woke up with these “things” under my jaw…me thinks they’re my saliva glands, but I suppose they could be lymph nodes. Any-who…Monday I called the Doc, since they were still the size of jawbreakers and not so painful that Vicodin couldn’t make me forget about them, but still annoyingly making their presence known. I was informed they could “squeeze me in” in four days’ time…

 Now I know I’m NOT the only sick person in town (the news is full of some new virus currently sweeping the State) but…four days? I politely told the nice lady, “No thanks.” Then sat down to wonder…is this REALLY something I need to worry about? Should I call the Rheumy and tell her all about it, especially since she suspects an overlap of Sjogren's? Or am I being a “Chicken Little” and worrying about nothing?

 My body has also begun this annoying habit of playing with the thermostat. I get the chills (temp was 97.4) then I turn around and spike a fever of a degree or so. Combine that with the fact that my blood pressure has begun spiking in the evenings…(WTF?) Of course, none of these are things that hang around for long (except the jawbreakers under my chin) so they’d never show up at an appointment…

 Yes, I’m keeping a journal of all this weirdness…but should I call? Is it worth the hassle of harassing someone until I get an appointment…just to read them a hand-written account of systemic-acrobatics? Inquiring minds want to know!

 I tell you what…this being sick crap is stressful! There’s just so much to think about and figure out…too much responsibility! “Excuse me, sir. Is it too late to take that other road? You know…the one everyone travels? I think I’ve changed my mind about this whole “character building” angle…”

Got Spoos?

 Just to switch gears to a less complicated note…I discovered that, as long as I go slow and hold it at eye level (an inch away from the tip of my nose) I can still cross stitch! Score 1 for the crafter! So…since I have this pathological need to personalize EVERYTHING I own, I had this brilliant idea to stitch an Awareness Ribbon with a spoon (who doesn’t LOVE “The Spoon Theory”?) onto a new hoodie. Remember, I AM the Hoodie Queen!

 Drew up the pattern…no problem! Stitched it on the hoodie…no problem! If I do say so myself, it looked awesome! I was so proud…*sniff* Showed it my daughter for appropriate props from the offspring at their Mother’s mad thread skills…”Hey Mom, didn’t you mean for it to say “Spoons”?” (Slowly turn my masterpiece to face me) Damn it! Under my beautiful ribbon it reads, “Got Spoos?”

I even misspelled the pattern!

 Hello brain fog, you illiterate idiot! I guess from now on, my patterns are gonna require proof-reading. *sigh*

Phases of Functionality

 Today it is raining where I’m at…and COLD!

 Every joint and bone in my body just HAD to find a way to say, “Good morning!” today….But, I’m feeling a darned site better than yesterday…so far. *grin*

 I often wonder, how many others have the “daily phases” of functionality. Or, is it just me?

 Phase 1) You wake up and (after a pot or so of coffee) feel GREAT mentally, but your body is still in it’s uncooperative state.

 Phase 2) You body FINALLY decides to get with the program and you have a good couple of hours when you’re FULLY functional and can get the chores and errands done.

Phase 3) You’re undecided about your body’s willingness to keep up, because your brain has decided it’s OBVIOUSLY nap time…let the “fog” commence!

 Phase 4) OK…you’re awake now, but the body is on the fritz.

 Phase 5) Hello pain! I was hoping you’d forget what time it was, but I see your watch is set on “let’s-kick-Chris’-ass” time. *sigh*

 Phase 6) Forget the fact that it’s only 9:00 PM, it’s bedtime since brain and body both have decided they’re falling asleep, with or without your consent!

 Yep…I get about two or three hours a day of firing on all cylinders…and you just KNOW it’s never the time slot when I need it most! But…that’s just life. So, you push yourself when you need to and hit the couch when you can. And when getting out-and-about is unavoidable during Phase 3, wwwwweeeelllllll…THAT’S when you’re in Wal-Mart doing you’re best zombie impression, making salespeople and small children nervous. ESPECIALLY if you neglected the make-up for the day! (Those are also the times when me hubby cracks the jokes about putting a beeper or leash on me, since I tend to start wondering aimlessly about!)

 It’s comical…he doesn’t really understand exactly what’s going on with my body (Over a month of 12 hour shifts 5 days a week, and 8 hour shifts on the weekends will do that to a guy.) But, he has added the phrase, “Are you lost in the fog again?” to his vocabulary. *grin*

 Since I appear to be approaching Phase 2, I should probably get a move on with the household chores…(Why does everyone think clean clothes are a good idea? I keep pushing the idea of joining a Nudist Colony, but they’re not buying it!)

 May you all find yourselves in the middle of a day that ONLY consists of Phase 2!

I Think I Had A Point, But Lost It!

 Last night my daughter and I took hubby his lunch. On the way, we were laughing so hard I thought I was gonna wet my pants!

 We had started by discussing upcoming Doc appointments, then I ended up describing an EMG (Electromyoghraphy) to her… ”They take this thing that looks like what you stick in a turkey to make sure it’s done, only this one has wires attached. They stick it in your muscle then zap you. Good times!” After that, the conversation devolved to means of torturing patients and ways of making us “talk”…

 Do you ever wonder who came up with these things? “Hey, John, I had an idea. Wouldn’t it be fun if we (fill in the blank) and we can pass it off as a “needed” test and charge out-the-ass for it!”

 “Tom, that’ll NEVER work! No one’s that gullible. I mean, who the hell would pay money to be  

  A) stuck with pins and shot with a jolt of electricity?

  B) injected with radioactive isotopes?

  C) repeatedly bombarded with radiation?

  D) eat barium while we pelt them with radiation?

  E) lay in a tiny, NOISEY tube while we pass magnetic waves through them?

  F) have hot and cold air shot in their ears, then see just how dizzy we can make them?

  G) covered in wires, put on a treadmill and see if we can induce heart palpitations?

  H) shut in a small, plastic box and forced to blow into a tube until they pass out?  You’re mad!”

 Modern medicine…but still, it’s better than being covered in leeches, bled repeatedly, or having holes drilled in your head. All in all, it’s worth it! It just makes you think…I’ve seen TONS of Frankenstein movies…and isn’t that how the Mad Doc reanimated the Monster? Stuck pins all over his body, then shot him with electricity? I wonder if the Technician that administers my test the 28^th would find humor in that observation. (Not like I’ll remember to ask by then! *grin*)

 On the flip side, it is an amazing thing, how many leaps and bounds they’ve made in the World of Medicine. They can look at the tiniest parts that make up our blood and know what’s making us sick. They can look at the fuzziest, black and white images and see holes or disease in our brains. They can watch us walk or bend and twist and know what parts or our nervous system have gone haywire and why. (In my case) They can look at your face and know by the way the skin subtly pulls a certain way at the corners of your mouth what is attacking your body.  The amount of knowledge locked inside the heads of these guys is staggering!

 Maybe that’s why I get so worked up over the ones who hang out their shingle, take in the trust of patients who blindly hand over the safe-keeping of their health to them…and they are incompetent! The ones who have succumbed to the monotony of a steady flow of nameless, faceless people needing their help. These are the Docs that give the good ones a bad name! These are the Docs that create patients like me who end up looking at all of them with guarded distrust.

 I understand the pressures put on them…the amount of people they are forced to see in a day…but they chose their profession. They chose their Specialty. They chose to be the ones we turn to for help and understanding. They should also choose to pay attention and care…

 OK, sorry about that! I’ll step down off the soapbox now…(tripping on the way down…)

 Still, I have a hard time in this era of on-line patient surveys, leaving negative comments. I like to give them the benefit of the doubt that I was the one who slipped through. Maybe they were having an “off” day and were too tired to read the tests themselves, putting confidence in an incompetent Tech. After all, we’re ALL human, even the Docs…(Damn it! I thought I’d gotten off the box…)

 I have no idea how to end today’s disjointed rant…so I’ll fake my way through making a point. (nervous giggle and thinking real HARD) This is why it’s so important to be actively involved in your diagnosis and care. This is why it’s important to know your own body…Because Docs are like car mechanics. (No, that’s not good…) Because Docs are like Theoretical Physicists. (Geeze! That one’s even worse!) Ok…Ok…I think I got it now…Because, in the end, we’re all responsible for our own health and treatments and understanding the "whats" and "whys" of the tests and their results. (Maybe…OK, good enough!)