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!)

Demented Trip To "Bright Side"

 Good morning! Another day, another chance to get off the couch…*grin*

  I spent much of yesterday playing the “look on the bright side” game and I came up with some good ones!

  1) I’ll never have to worry about wanting a face-lift! The way the skin on my face has “tightened-up” has     already erased many of the signs of age that kinda freaked me out last year…as the minute amount of Cherokee blood in me made its presence known, my cheeks had started they’re slide off my face and I had developed what my Mom and Grandma called the “turkey gobbler” under my chin. GONE!

  2) Raynaud’s can be handy. Pulled muscle? Achy shoulders? Thumping headache? No problem! When your hands are constantly ice-cold, you can use them as an icepack! If you’re in the car, you can hold them against the cold window to re-chill when they warm up. (No joke! I’ve done this more than a few times. *grin*)

  3) I finally have something that will FORCE me to quit smoking! Yes, I am a “stress” smoker and this IS a massively stressful time, but…I seem to have noticed that breathing is not optional after all!

  4) I have maintained my titles of “Out of the Ordinary” and “Nothing’s Every Easy.” I couldn’t have something “main-stream” that people have heard of like Lupus or MS (previous "possible" diagnosises)…Nope, I gotta go for the “What’s that?” chronic illness.

  5) I’ll probably end up being healthier than most “Healthy People” since all my internals will now and forever be monitored closely for signs of disease. I’ll be hyper-aware of changes to my body…most people take things for granted and overlook the signals their bodies send out that something’s off. I no longer have that option.

 That’s all I’ve come up with so far, but hey! It’s only been one day…

 And as I thought about it, I was AMAZED at the difference just one day…one word could make. The reality is, nothing’s really changed, yet EVERYTHING has changed. I’m still me, my body’s still doing the same demented circus routine…the only difference is the circus now has a name. Cirque de Sclero. (I just got a mental image of my lungs in leotards doing a trapeze act…I am SO not right!)

 Also, now that I’ve been “officially” diagnosed with Fibromyalgia I can use the terms “Fibro Fog” and “Brain Fog” instead of “Stupid Moment!” Although, yesterday when I was attempting to explain to my daughter WHY people get the whole “foggy moment“” thing, I somehow ended up calling it “Bain Frog.” (That’s right…it’s caused by frogs in my brain! The truth finally comes out.)

 The down side of it is, I have read the same five pages of my book at least half-a-dozen times…and still have no idea what it says! I’ve also listened to the same CD three or four times…and each time it’s like I’m hearing it for the first time. I guess it’ll save some money on new music.

 Since I can’t currently feel my feet, I guess it’s time to get up and go find some socks…but before I go remember...it’s always easier to look on the bright side, since we can’t see in the dark!

Chin Up, Kid

 I apologize up front for the decided lack of humor in this post…but I’m sure you’ll understand. Sometimes, even the most up-beat clown has to take off his make-up.

 I’ve sat down twice now to write the Wednesday “Posts You Should Check Out” update…but I couldn’t do it. My brain has been so pre-occupied. First, with the whole Rheumy adventure, then with the phone call I received yesterday.

 The Rheumatologist, NOT her nurse, called yesterday to tell me my tests came back positive for Scleroderma. She said she was still a little leery of giving me a definitive diagnosis since I have no apparent skin involvement outside of Raynaud’s…but we have to proceed quickly, since this would mean it’s affecting my internal organs instead. I have an appointment with a GI guy in a few weeks and we’re waiting for the results of my lung function test to gage how much lung involvement is already present. Then we’ll move on to the liver and kidneys.

 I sat down again last night to write Wednesday’s post…but I simply couldn’t. My brain was processing all this info. Yes…you know the possibility. Yes…you know intellectually what that means. Yes…you think you’re prepared. Yes…in the wee, silent hours of the morning, when you’re alone with your thoughts and a little soulful music, it hits you what it actually means…

 There’s already a knowledge that you’re sick, that life will never be exactly the same again. You want to know what’s happening with your body so you know how to combat it…you’ve already heard the words and have done the research…but to HEAR the words. To HEAR the concern in the voice of a woman who sounded completely bored and unconcerned the only time you’ve met her…

 In those early, dark hours of solitude, you let go. You’re alone and can let the smile fade and cry. You’re safe to shed tears of sorrow, not for what was, but for the road ahead and what it means for you and your family. The complete realization that the words have been spoken, somehow making it more real that you will never be “well” again. The day WILL come when you feel better, but you’ll NEVER be WELL. No “take-backs” and no “do-overs.”

 It’s not a pity-party…it’s not feeling sorry for myself…it’s being human. And sometimes being human is terrifying and painful, not just the physical pain so many of us live with every day, but that deep-down heart pain.

 I remind myself that Life is uncertain for everyone, not just those living with chronic illness. I am NOT alone in all of this. There are so many brothers and sisters that have gone before me…that are here now…that will come after me. And they’ve all gone through this. It’s normal, even “healthy” to cry…to mourn…It’s even normal to get angry, although I haven’t gotten to that one yet. I’m sure it’ll come eventually. (My logical side is vaguely aware there’s a grieving process similar to what occurs when someone dies.But right this moment, logic can go suck an egg! )

 I cut all my hair off. This may sound live such a random statement, but it made an odd sort of sense. My hair has been clogging the shower drain, even with the little screen that’s supposed to catch it. It simply can’t keep up with the amount that’s falling out. With this (tentative) diagnosis, I know it’s probably not going to stop anytime soon…so at least there’ll be less to clog the drain. Also, it felt like some form of “statement” of preparing for battle. So, me being me, I posted a picture on FB with a caption that said something about receiving a call, about the test being positive, and having a “Brittany Spears” hair moment. The one reply I received that touched my heart beyond words was a video-link from a very dear friend with the words, “Chin up, kid.”

 And that’s it, isn’t it. You have your quiet moments of grief and sadness, with a side-order of fear and uncertainty. Then you wipe your eye, blow your nose, take a deep breath, and put your chin up.

Lost In The "Fog"

 Good morning, Wednesday! Sorry for the late post, but I had an appointment to fail a pulmonary function test at o’dark thirty. *grin*

 Yesterday was a true eye-opener…not to mention an INTERESTING adventure. I had my appointment with the Rheumatologist in Indy. Now, keep in mind I spent 18 years of my life living in Indy…I know it (or used to) like the back of my hand…

 We made it there just fine. Even managed to navigate the rat-maze that is the interior of IU Med Center to find the right room. We waited over an hour for the Doc to appear…then it all kind of went weird. By this point I was EX-HAUS-TED! So, of course, my brain had gone completely off-line. Her questions didn’t make a lot of sense to me, and I’m pretty sure most of my answers made even less sense to her. (Sadly, my daughter didn’t like the woman on sight and was grumpy from the wait, so was NOT the best help to have with me. *sigh*)

 At one point, the Doc spent 15 minutes asking me if I thought I had Fibromyalgia. I kept asking her if she thought I did and kept getting the answer, “Do you think you do?” (WTF? I did not realize I was paying for a self-diagnostic visit!) After a verbal exchange worthy of Abbot and Costello, we established she’s “pretty sure” I have Fibro, but also something else. So…it appears Bob has a sibling! (Betty, perhaps?)

 Now the fun REALLY began! I found out I have had not one, but TWO positive ANA (anti-nuclear antibodies) tests, which are used to check for Lupus and a few other Autoimmunes. One of the tests showed  a Nucleolar pattern, indicative of Scleroderma.  She was not happy about this, since she’s convinced I don’t have Lupus (cool) but she’s confused about Scleroderma, since I have no skin involvement. (Hello? Have you ever heard of Systemic Scleroderma?) So yet MORE blood was taken to do a more intense work-up for Sclero. (Whoopie! More waiting!)

 In the meantime, I was told I’m already taking the meds they would use to treat Fibro, so I’m just golden on that front. (Really?) So…she dipped my fingers in cold water to confirm Raynaud’s, looked at my knuckles, which in my younger days were busted on inanimate objects so frequently that they are NOT a good indication of anything except youthful stupidity, then sent me merrily on my way….

 Where I proceeded to get LOST! I didn’t just get lost trying to find my way back to the parking garage, I got lost trying to find the flippin’ Interstate home! I lived in that city for 18 years…and could NOT FIND THE INTERSTATE! Holy cow, my brain was fried!!!

 So now…it’s sit and wait…and wait…and wait…*sigh* (I am so darned impatient!) Oh, and did I mention she also suspects Sjogren’s, which would explain to my Dentist why me teeth SUCK when I DO brush and floss…

 But, it always seems one answer leads to ten more questions, tests, and specialists…(Get to see an Internist, since my throat and digestive system have stopped moving…*doing a lop-sided happy dance*)

 Just to make sure I don’t come across as completely negative…I am thankful for ANY answer I get. I am thankful for our awesome insurance, and I am thankful that SOMEONE is finally looking at test results, instead of telling me everything was “normal” when, OBVIOUSLY it’s not. I am thankful to have friends I can rant at who will laugh with me, making all the needle-pokes and waiting easier to take.

 And, most of all, I am thankful for the readers who let me know I’m not alone…for the brave souls who have hazarded the diagnostic swamps and quagmires before me and let me know that I too will survive this insanity!

Feelin' The Love!



Crochet heart bookmarks I made my family
to show the love!

  Happy Valentine’s Day everyone! I hope your day is filled with all the love Life can fit into it!

 Speaking of love, the new ChronicBabe Blog Carnival “You Are Loved” is up.  It features some completely awesome writers ready to fill your day with extra love…from yourself as well as others!

 Update…(This is gonna be a short one, since I’ll be leaving for the “Big City” before long for a VERY romantic date with the Rheumatologist! *grin*) Forrest, my 2^nd son, ended up stopping by yesterday before work to thank me for rescuing him. (He does care!) He just hung out, cracking jokes, and brightening my day a bit. It was sweet and made up for the lack of sleep.

 I’m on pins-and-needles about my visit with the Rheumy…I know, I know…it’s just another Doc. I don’t expect a diagnosis or any great epiphany on her behalf, but…hope springs eternal! *grin* My daughter, who is becoming my “walking memory bank” is going with me again…so it should be another giggle-fest. (See, there IS always a bright side!)

 We coined a new term this week…”Zombi-flauge.” Definition: Zombi-flauge, the make-up applied to cover the zombie-like appearance of a person. I.E. I put on TONS of make-up to cover the purple-grey circles under my eyes and beneath my cheek bones. I keeps  me from scaring small children when I go to the store. (I crack myself up!)

 Confession…I have become slightly “addicted” to Tumblr over the past couple of weeks. (Don’t worry, Blogspot, you will always be my first love!) I had to open a “page” in order to “follow” my daughter’s blog…One day when I was too exhausted to leave the couch, I spent all day playing. And I discovered there is a HUGE “chronic illness” community. There are several awesome blogs, beautiful poets, and some of the most talented photographers I’ve ever come across!

 What surprised me and saddened me the most, was the number of early-20’s and late-teens that have been posting in fear, frustration, and loneliness at their status as currently-undiagnosed. There are just as many in the same age group posting in the same ways that are already diagnosed and mourning their life-long battle ahead. My heart goes out to them…

 So many of the auto-immunes tend to “hit” us in our “middle” years…We’re a bit older and a bit more “settled” by that time. (OK, not ALL of us…) Maybe it makes it a tad bit easier to face so many of the challenges. I can’t imagine what it would have been like when I was 18…25…(Yep, I’ve been corresponding, attempting to “Mother the World” as my hubby puts it.)

OK, enough seriousness for now. (And so much for this being a "short" post...)Time for a shower and the mad dash to make sure all my paper-work is in order before I hit the road.

 I hope you all have a wonderful day full of love and laughter!

Gratitude And Gas

 3:00 AM and the phone rings, waking me out of a dead Flexural-induced sleep! It’s my 2^nd oldest, the little birdie who flew the nest in December. He’s out of gas (again) and needs a rescue (again). Hubby’s out like a light and is facing a 12 hour shift come morning, so off Mommy goes…in the cold…and dark…

 I arrive to find a passing co-worker had stopped and given him a ride to the gas station. Nice! He asks me to wait, since he killed his battery trying to “wish” gas into the tank…Fine! Gas...check. Battery…check.
I follow him to the gas station to make sure said battery is going to re-start after a proper fill. As he’s pumping, I pop into the station for mandatory coffee…and he leaves! HE LEAVES! No thank you…no hug…NOTHING!

 I got back home around 4:30...wide awake. No going back to bed for me! So I sat and thought for awhile. First, about what a flippin’ knucklehead I raised. (Ungrateful little turd!) Then, after the grumbling subsided, I started thinking about gratitude in general. How easy a word it is to use, but how hard it seems to be to show.

 Personally, I’ve always been aces at showing the flip-side. (Just ask my parents!) But…how good am I at showing the better half? Oh, I say, “Thank you!” to people all the time, and I even mean it! But is that enough? Is that truly gratitude?

 Several weeks ago, while I was visiting my home away from home, AKA the pharmacy, I heard a woman COM-PLAIN-ING to the manager about one of the Pharmacy Techs. How rude the woman was to her, how much she needed to mind her own business and just do her job, and on and on. (Sadly, I know the one she was referring to, and she was dead on!) But it got me to thinking…how often do people track down the Manager to tell them what a great job an employee did? How helpful they were?

 So, when I dropped my script off, I made it a point to not only thank the woman for helping my at that moment, but I thanked her for always greeting me with a smile and never being judgmental about the number of pills this seemingly “healthy-looking” (thank you make-up!) 41 year old was taking home.

 Webster’s defines “Gratitude” as, “The state of appreciation and gratefulness; thankfulness.” I think I would like to spend more time in that state. I felt good to tell someone what they were doing right to make my life easier, not just what they were doing wrong.

 So, I guess my son taught me a bit of a lesson this fine, EARLY morning…gratitude feels GOOD! And the feelings happens on both ends of the
equation. So, for that, thank you son!

 Now…the next time the little rat comes over, I’ll be sure to teach him a lesson in return!

Tripping Along The Path

 Sometimes, life is such an odd bird! It seems like the days you’re feeling the lowest, or maybe a tiny bit isolated…those are the days you get that little pick-me-up you REALLY needed!

 I think the universe is constantly sending us little nudges in the right direction, it’s only when we are too busy to take note that we then get the proverbial “smack up-side-the-head.” (And some of us are even too thick to notice then!) I SO wish I could say I’m one of those “enlightened” individuals who spends hours in quiet meditation and am completely attuned to and at peace with my place in this world…that I walk with grace and wisdom on the path I was meant to be on. But I’m not.

 I have tried meditation, off and on, for years. All I ever managed to achieve was a good nap. Yep…if I actually quiet my mind, I fall asleep. And as for walking with grace and wisdom on any path…well, I’m the girl who managed to fall off a 1” sidewalk and break a bone in her foot. (Fell off from a standing position, I might add!) “Grace” has NEVER been in my vocabulary…and many would say neither has “wisdom.”

 But I try…in my own way, to listen. And I try to find the path I’m supposed to be on. And there’s gotta be some kind of “bonus points” given for effort…right?

 OK, so this week I’ve been reading “How Too Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” by Toni Bernhard. I’m only half-way through it at this point, but it is making me think…and question.

 It puts a TON of great ideas and tools out there to help you make peace with your chronic illness, I’m just not sure my “Western-programmed” mind can wrap around some of them. Besides, I have a very difficult time grasping any form of passivity. I’ve always been more of a “fighter” type of gal. And, with all the wonders of our Modern Medical System and finding the right Doctor, well…being actively passive doesn’t seem to fit.

 Or…maybe I just need to read it again and attempt to look at it from a different direction? Have any of you read it? Am I making it too hard? I would LOVE to hear your thoughts on the subject…*grin*

It's A Dog's Life

 Today I wish I was a dog. (No, really!) Why, you ask? OK, if you're sure you wanna "go there!"

Our bestest-buddy, Scooter, catching a "quick" nap
in our bed. Who says you need thumbs to pull down the covers?

The Top 10 Reasons I Wish I Was a Dog Today:

 1) Dogs don’t get migraines. Think about it…do you ever see a dog lying in a darkened room, earplugs in, hugging a “puke bowl” and sobbing like a baby? Yep, didn’t think so.

 2) Nobody cares if a dog sleeps 20 out of 24 hours a day. Heck, we expect them to! Bark if someone shows up and sleep…that’s their job. (Lucky bastards!)

 3) If you ever see a dog with his head in the john, it’s because he’s thirsty…or just plain curious. It’s definitely NOT because he’s got the flu, drank too much (again), has a migraine, or ate gall bladder-forbidden food.

 4) (You are ONLY gonna get this one if you suffer from the EVILS of hemorrhoids! You’ve been warned.) Dogs can drag their arses across the floor with complete, total abandon…with a smile on their face! Well…at least until they get caught…*grin*

 5) No one expects you to clean up your own (or someone else’s) mess...EVER!

 6) No one thinks you’re weird if you sniff them or lick their face. (Please, do not even ask…)

 7) If someone walks into the room and you’re taking an innocent nap, sprawled out spread-eagle on your back, buck-ass naked…it’s OK…’cause you’re a dog.

 8) YOU CAN SCRATCH WHERE IT ITCHES IN PUBLIC!

 9) All your meds come wrapped in cheese. (Uuuummmm…..cheese!)

 10) If you get the munchies in the middle of the night and your food bowl is empty, you don’t have to run to the store. If you’re a dog, you always have options…garbage can, litter box…(Hey! Don’t judge, it’s dogs were talking about…LOL!)

*Honorable Mention 
  11) As a dog, making friends is a breeze! You walk up, sniff a bum, lick a face, and it’s all good!
                
 and, finally...last but not least

  12) If something is annoying you, you can eat it.

Love That Laughter!

Some of my favorite funny things to
laugh at...

 I’ve been thinking a lot about “love” lately. That may be due to the fact that EVERYWHERE you look is plastered with pink and red hearts! Even my living room is covered in pink…HUGE, fluffy back-pillow, fuzzy blanket, lap-desk for my laptop, and all my favorite comfy jammies…(I am NOT girly!) So, it’s become painfully obvious that Valentine’s Day is just around the corner.

 I’ve always known I was loved. My hubby and our family are my rock. Always have been, always will be. But this past year, they’ve turned into the flippin’ Himalayans! That is kinda making this year’s festivities of “love” extra-special for me.

 A lot has changed around here since Bob moved in and propped his gnarly, little feet up on the sofa. (For those currently confused, since the Docs have yet to give me a definitive diagnosis, we decided to call whatever is attempting to kick my butt “Bob.” Gives me a name to insert in the occasional stream of obscenities.) In the last year, I’ve left the work force putting the full weight of providing for us financially on hubby’s shoulders. The kids have all made extra sacrifices, both in things we can’t afford and in more time here helping out. There have been too-numerous-to-count sleepless nights on everyone’s behalf, wondering what the future holds with our new “house-guest.” One thing hasn’t changed though…and that’s the love that bounces off the walls around here! (Love, socks, air-soft darts…)

Captain Smurf-In-Training!

I won’t lie. When things started getting “heavy,” I was worried the strain would cause the laughter to fade, tempers to get short, and people to put on their “kid gloves” when dealing with me. But, thankfully that wasn’t the case. I discovered early on, that as long as I “encouraged” (OK, maybe threatened) people to keep talking, then it not only helped them deal with their fears, but it helped me as well. In this house, there has NEVER been talking that wasn't closely followed by all manner of sarcastic and completely off-the-wall joking and side-splitting laughter!

 Geeze, when I think about it, all my major life-changing events have occurred to those beautiful sounds. The first time I met my hubby and knew he was THE ONE he was laughing. (I looked in those smiling eyes and knew I was doomed. But doomed in a really good way!) The kids all came into this world to the sound of laughter. (OK, it was crazed laughter that it was finally over…but still laughter!)

Early-morning hair...

 And that’s it right there…the one thing that shows me I’m loved the most. The laughter. As long as you’re surrounded by that sound, it’s impossible to be frightened of the unknown.  

Meet Bob

 It was bound to happen sooner or later…I lost what little mind I had left! Today…we went on a “Bob Hunt!”

 It all began with the call from the Neurologist’s office…telling me ALL the blood work, as well as the pee-in-a-cup, came back “normal.” I swear, I HAVE to be the most NORMAL person on the face of this planet!

He's so evil, he can't even
grow an even mustache!

 So, I had your standard half an hour or so of the “Fine! I quit! No more meds (vodka’s cheaper anyway)! No more Doc visits! No more tests…because I’m NORMAL!” Then I ran some errands with my daughter…and I fell over one or two (or more) times. Thankfully, my daughter was close enough to catch me (the truth is, I more or less fell into her...) every time. *grin*

 Then, I attempted to indulge in my #1 weakness…Krispy Creme Apple Pie, and had some fun with the food getting stuck just outside the tummy…again! (At the time of this writing, it's STILL sitting there like a rock!)

 THIS IS NOT NORMAL!!!

 So I got mad. I wanted to kick Bob’s ass! I wanted to punch him in the nose…all kinds of different things I could just picture myself doing to his obnoxious person…Then it hit me! I needed a “Surrogate Bob!” And the hunt was on.

 We found him in a little thrift shop, sitting quietly on a shelf doing his best to look all cute and blend in…But I knew! Nothing that darned cute could be that darned innocent! He was a devious little monster in disguise. He even had an insidious bag of tricks with him! So I grabbed him off the shelf, (cursing threats under my breath all the while) and ran to the check-out. After words, I threw him...with force...into the backseat! (No co-pilot status for this guy!)

Told ya he had an
insidious bag of tricks!

Once we arrived home, I did a bit of "cosmetic" work on him, to help bring out his true nature. I smacked him around a bit, just to establish who was in charge around here, and then placed, without ceremony, on a shelf above the computer. He can be seen, easily grabbed for a little good-natured abuse, but for the most part he's out of the way. (Seemed appropriate, somehow.) 

 And this, my friends, is how Bob came to live with us. Now, when I’m feeling extra-special crappy, I can beat the bear-snot outta him. When the muscle spasms start, I can twist his little blue (my daughter says he’s actually green) body ‘til he feels as wrung-out as I. Yep, Bob and I can now go tit-for-tat and I can have the last laugh!

I'm That Kid!

 I had a moment this morning…not really an epiphany or anything so profound. I t was more like, “Ooohhh….that’s good! I need to write that one down!”

 Sometimes Life is like a Mom with one of those “kid-on-a-leash” thingies…she gives you just enough rope to hang yourself before she yanks you flat on your ass, giving you time to look around and see where you are really supposed to be.

(Quit waiting for it. That was it…my moment…LOL!)

 Last night, as I was reading through all the blogs I follow, I was in awe of all the talent out there! There were blogs that had me laughing so hard I could barely read them out loud to my kids (whether they wanted me to or not.) There were blogs that were beyond well researched and informative, giving me the info I needed to make informed decisions with having to do all the homework. There were blogs that were inspiring in the courage these people displayed in their day-to-day lives with the all the obstacles they face.

 Like I said…I was in awe. Then I was a bit jealous. Then I was inspired to get up and DO something! I know, I’ll be a patients’ rights activist! Wait, I’ll start researching and keep everyone informed on the latest goings on with Law-making! No, wait…I’ll go back to school and become a motivational speaker…No, wait…I have serious short-attention span and I can’t remember what I was so excited about…

 Then it hit me. I’m not one of “Those” people who were meant to do these great, amazing things. I’ve always been the “class-clown” who couldn’t sit still for more than five minutes or even focus for half that long! I’m not an informed comedian, like Lewis Black or Ellen DeGeneres , that uses humor to make people think. I’m Rosanne Barr…you know, the OLD Rosanne, when she was funny…before she went all “Hollywood” and started scaring me and other small children. Rosanne in the 80’s, when she was “just” a wife and mother.

 I can live with that! After all, laughter does great things for the body…and soul. I can accept being “just” the funny-gal. Besides, it caters to my self-proclaimed ADHD! But…what about all the other unbelievably-awesome stuff out there? Well…I figure I could always share!

 Wednesday’s traditionally the weekly “hump-day”…if you can make it over the hump, it’s a down-hill slide to the weekend. So…I figured it’s be a good day to start sharing some of the really neat stuff I find in my over-abundance of free time! (What’s the connection to “hump-day” and sharing? I don’t know…Still trying to figure THAT one out!) So, from now on, I’ll keep track during the week of stuff everyone should be reading, and pass it on…starting next week, ‘cause I only came up with the idea last night…

 OK…I do have a few sites you REALLY should check out that I’d already book-marked…

Regina Holliday's Medical Advocacy Blog  This is one of the amazing talents I was talking about. She’s an artist who paints for patient’s rights and awareness! Her work is beautiful and her writing is engaging, insightful, and informative!

The Bloggess This woman had me laughing ‘til I almost wet my pants…(OK, that’s not really hard these days…) Like I said, everyone could use more laughter in their lives, and she’s definitely the one to help with that! (Small warning...if you're offended by the use of a little foul language here and there...be warned.)

Going Down Swinging: A RSD/CRPS Blog This is a great place to go for a heavy dose of inspiration!

 OK…next week I’ll post links to individual posts, I come across…

 Completely switching gears…and just to finish up yesterday’s saga…I FINALLY found my smile! And, just to make it extra awesome…it’s purple!

The Tragic Tale Of A Smile

 OK…this morning I played the “Good idea, bad idea…” game, and I kinda lost. (Every orifice on my face in currently running like a leaky faucet!)

 It all started way back at 5:00 AM…it was a chilly, dark morning and I awoke to the usual laundry-list of aches and pains, as well as the new “face-ouchies.” I sat down at the computer with my usual morning coffee, and began to play.

 And there it was! A “comment” in the in-box…draw a smile on…And it all became clear to me! I knew what it was I must do…The answer to both conundrums…(Yep, I just used the word “conundrum"!) IcyHot Patches and a Sharpie! (Please don’t ask…it made such amazing sense at 5:00 AM, running on half a cup of coffee…)

 So I ran to the bathroom, threw open the cabinet doors, and there it was…glowing like a

Creepy, ain't it?

 beacon of hope in the glare of the vanity lights! I reached for the box and hugged it to my chest as if it were a precious jewel.

 Quickly, I grabbed the scissors and opened the pouch, removing one lone medicated pad. With a certain hope growing in me, I cut the pad in half, peeled the protective backing off, and “slapped” one on each cheek! Aaaahhhhh….the soothing cool caressed my cheeks like a long-lost lover. Then the warmth…sweet, soothing warmth…

 I quickly ran back to my desk and tore through the drawer, looking for the Sharpie that would complete my maniacal plan! There it was, yes! I almost skipped back to the safety of the bathroom and it’s mirror, so proud of the thought I’d put into this!

 With a giddy laugh, I popped the top off the marker and began to draw…a smile! Yes, a smile…and rosy cheeks. Of course! I can give myself rosy cheeks! (Insert creepy giggle here.)

 I stepped back to admire my handy work, pleased at the results of my morning’s activity. I was a genius…a flippin’ genius! Then I felt it…the first hint that something had gone awry…

 At first, it was just a tingle. A slight moisture to my eyes…(I must be crying with pride at my accomplishment!) Then a tiny trickle from my nose…What the...?

Then the “flooding” started in earnest. My eyes were no longer just misty with pride, they were free-flowing. My nose was a river of goo…and I remembered the lessons of my youth, long thought lost to the ravages of time. "Menthol action" around your face will break your sinuses…and EVERYTHING ELSE loose!

 *sigh* So, what began as my great joy, ended with complete failure, I lost my smile twice in one day…and used half-a-box of Kleenex.

*Author’s Note:

 Actually, the short time the things were on my cheeks DID help a bit…plus, it opened my pores like nobody’s business! As for the IcyHot Patches, with the number of muscles that currently have decide “tied-up” is a way of life, I think I could own stock in these things! They work like a charm…just obviously NOT meant for faces. (And I checked the box…it only says to avoid “contact” with eyes…nothing about the face in general. LOL!)

**And, sadly, no one is paying me to say anything good or otherwise about this product. (I wish!)

***No IcyHot Patches were harmed in the making of this blog.

An Explaination And A List

 Yesterday was “Bad Poetry Sunday”…and I spent the rest of the day feeling oddly embarrassed. I “replied” to Mary last week that I have no problem writing about bladder control (or the occasional loss there of) but there was something slightly exposing about posting poetry…like standing naked in Wal-Mart.
 So, I guess I spent the rest of the day feeling naked.

 Being the person I am, I also spent a great deal of time OVER analyzing my “style” and “content,” wondering why all the poems seem to follow a sort-of pattern…and then it hit me…they do follow a pattern, but it’s a darned good one!

 I write these things in the “morning” (i.e. at o’dark-thirty when I’m sitting sleepless in front of the ‘puter) so, they’re really the beginning of my day. They are reflections of my daily ritual of looking at the “where I’m sitting” and then looking at the “where I want to be” and the path I choose to get there.

 Yep, pain is NOT fun. None of us really enjoy dealing with it. Yep, I could crawl under the covers and hide all day…being a cranky b-word. (OK, more so than normal!) But…I’d rather spend my time laughing and enjoying the good things, despite the pain, because there is much to be thankful for. (Even if I’m being “thankful” from under a blankie on the couch.) That, my friends, is my poetry in a nutshell…

Me and my "girl" all dressed up.

 I guess when I look at it that way, naked ain’t so bad…(OK, metaphorically speaking…*grin*)

 Today is my big trip to the new Neurologist…*gulp*…Hubby has no time off work left to allow him to go with me, so my AWESOME daughter gets the privilege of being my co-pilot! The cool thing is, we are alike in so many ways, that she deals MUCH better with my sense of humor than the hubby. (He still cannot understand the whole “Bob” thing…) She gets the fact that I’d much rather laugh in Bob’s face, taking away his power to scare me, than cry at the unknown. So I foresee many inappropriate giggling episodes at the office today…

The family that plays "zombie" together,
stays together...LMAO!

 Here is the truly IRONIC thing that has popped up in the last few days…It now officially hurts to smile! NO JOKE! My facial muscles have gone on strike. Smiling for more than 30 seconds leads to muscles spasms, intense pain, and low moaning/groaning. SERIOUSLY!

 And, just for the record, I will put up with a lot of rebellious, teen-age activity from my bod, but the refusal to smile is not one of them! Besides, have you ever tried to laugh without smiling…does NOT work well. (Whole new meaning to “dead-pan humor.”) So, inquiries about muscle relaxers is officially on my list of, “Hey Doc…” questions.

 (Ya know…I’ve sat here for almost ten minutes, fighting to urge to do what I’m about to do…so I apologize in advance to anyone I am about to offend…) My demented sense of humor has deemed it necessary to put the other, “Hey Doc” questions in the form of a “Top 10 List.” (I am so glad I alone see my notes at these appointments…otherwise, they’d probably end up keeping me for observation!) So, feel free to skip over this last part…or see it for what it is and have a HUGE laugh with me!

Hey Doc…top 10 things I really need “help” with:

1) My “mommy parts” called, and they’d REALLY like their nerve-endings back!

2) Hair loss and “chunky” pee…WTF?

3) My body wants to kick my heart out of the band. The damned thing just can’t keep a beat.

4) Is there any way to replace a fuse in my brain? My thermostat is on the fritz…It’s like watching a loop of a strip-show…sweater off, sweater on, sweater off, sweater on…

5) Something needs to be done about the sense of smell. I mean, how will I know when to shower if I can’t smell?

6) Check out the fingernails…“Nails grown by Dali and blind Picasso!” NOT a good look…

7) Can you please have a motivational chat with the bones in my feet? They’ve decided they’re not happy with their place in this world and have started randomly switching locations…

8) “When good lungs go bad”…or, “Breathing, over rated or necessity?”

9) …OK, I guess it’s a “Top 8” list. *grin*

 I hope everyone has a great day full of tons of laughter…and wish me luck!

Thanks And Praise, Part 2

 I know I don’t usually post twice in one day, but I wanted to get this up…NOW! *grin*

 I found a site on Tumblr called Chronic Curve owned by a woman named Emily Bradley. She is doing something AMAZING for others living with Rheumatoid Arthritis. She has designed a lovely Awareness Bracelet and is selling them on her site. The cost is $5.00 and $2.50 of each bracelet sold goes directly to the Arthritis National Research Foundation.*

 She’s been posting updates outlining the cost of research per patient with RA as well as cost per patient with other autoimmune diseases.

 Besides the bracelets, there is a wealth of well researched knowledge on her site. She also has a great sense of humor!

 I’ve added a permanent link to her site on the left…So pay her a visit and put the word out about her beautiful item to those you know who suffer with this or care about someone who does!

 And thanks to Emily for allowing me to use her artwork and links! And thanks for all your hard work!

*Oop! Emily just e-mailed me to let me know the money raised is also going to establish a Schoarship Fund for both Graduate and Undergraduate chronically ill Students!

Thanks and Praises

 I wanted to thank everyone for their kind words yesterday. You are the reason I started writing this blog…I knew if I was feeling confused and alone while going through this, there were others out there feeling the same. The REALLY awesome thing is, I’m not sure if I’ve helped others to feel less “alone” but you have all helped me! *gushing and blushing*

 OK…I wanted to share an AMAZING book today. I’ve been reading it over the last two weeks…only allowing myself to read a few chapters a day to stretch it out as long as I could. I swear, I didn’t want it to be finished!

 “Dancing At The River’s Edge: A Patient And Her Doctor Negotiate Life With Chronic Illness” by Alida Brill and Michael D. Lockshin, M.D.

Alida Brill is a wonderfully strong woman who has battled chronic illness her entire life. They have never been able to diagnose (in other words, put a name to) her illness outside of the knowledge that it is autoimmune in nature. Her writing is raw, honest, and at times a little hard to read since it reflects some of our most secret of thoughts about our illnesses. Although she seems to frequently discount her courage, she is a true hero, even without including her work with women’s issues!

Dr.Michael Lockshin is a Rheumatologist who has dedicated his entire career to not only fighting the diseases that can overtake the lives of his patients, but also to insuring his patients are able to live the lives they want to live despite their illness. His writing is deep, thoughtful, and always centers around his desire to weight the consequences of treatment in the “here and now” with quality of life in years to come. (We should all be so lucky as to have a Doc like this!)

 The first difference you’ll notice with this book is the way they handle the collaboration. Each chapter is written by one or the other, alternating view points on the same topic. It is truly amazing to climb inside the head of one of the people who dedicate their lives to helping those of us who suffe,r as well as reading each one’s reactions to the differing ways they perceives the same issues.

 I freely admit there were times I had to close the book for a few minutes and simply sit and cry. The emotions from each are so true and come through in their beautiful writing. There were also times I laughed long and hard thanks to the fact they shared their joys and not just their sorrows.

 I cannot recommend this book highly enough! Although I will warn you…you might end up as I did with Doctor-envy. I probably made the same comment at least 40 times while reading this book… “I would give my left arm, LITERALLY, to have a Doctor like this guy!”

Longest Days...And Nights



Yes, I can sleep sitting up,
in broad daylight...just not
at night, like a normal person!

  It’s 5:00 AM. I’ve been up for four hours now…I tended the fire, played on the computer, talked to my son who’s running on 3^rd Shift time, and read. I’ve listened to music (currently “Your Life Is Now” by John Mellencamp is playing) and spent time staring out the dark window thinking.

 Insomnia is becoming one of my closest companions, whether I like it or not. It’s also one of my worst enemies, wreaking its own brand of chaos on my already “under-the-influence-of-Bob” body. I briefly tried avoiding the afternoon nap thinking this would help me sleep through the night…I only ended up on a near-24-hour stretch and seriously slap-happy!

 So I sit here in the not-so-dark, (yes, I turn ALL the lights on!) silent house…alone with my thoughts…thinking over last night…

 Yesterday evening I actually cooked and took a warm meal to my hubby at work. (Also my former place of employment.) Admittedly, I’ve been feeling UBER guilty about my “unemployed” status and wondering if I couldn’t just “try harder” and get back to it…work, I mean.

 I went in a bit early to also feed a couple of my dear friends that work there…feed them and catch up on all the good gossip! I ended up spending almost two hours sitting in the break room as a steady stream of friends and former co-workers gather round the table to chat, say hi, ask how I was, or just grab a free plate of food. It was nice…but also a bit of a rude awakening. Two hours sitting on my bum on a hard, plastic chair talking…and I was exhausted! It was like walking through wet cement to get up and walk back out to the car.

 There were other “awakenings” that were also noted…I discovered that I have begun to look at people a little differently now. I don’t know when it happened, but at some point the world became inhabited by two separate “groups” of people…the “Healthy” and “Us.” I don’t mean for it to sound like I know it does, but the distinction was almost instinctual! As the steady flow of “Healthy” people came and went, the talk was all about who was doing what, what lines were broke, what shipments were missed…the usual.

 Then there were the two women who both suffer from Rheumatoid Arthritis. As we found ourselves more alone, we relaxed. The tone was a little more weary, although still happy. Our discussions less guarded when asking and answering the, “How are you doing?” question. There were no deflective, “I’m fine.” replies…more brutal honesty. We talked about new meds, old meds…the pros and cons. How much Insurance covered…the locations and names of new Specialists. The seasoned Warriors welcoming the as-yet-unproven youngster…The latest member of this unspoken “club.” There was no pity in anyone’s eyes. The discussions were never heavy or whiney. It was simply…real and different.

 And I wondered…and I’m still wondering as the song plaing in the background switches to “Longest Days,” is it always going to be like this? Are there, from this day forward, going to be two groups? Is this simply a shift in perspective everyone goes through until they get better acquainted and “comfortable” with their own Bob? Will life ever get back to “normal” when dealing with people? (Princess Buttercup gave me several warm, welcomed hugs…then I noticed her sniffling as she walked away and got a bit nervous about whether or not my currently weakened reparatory system had been exposed to something…*sigh*) Or is this my new “normal” and this is simply the transition period? Does it get easier…less awkward?

 Yep…this is exactly why I should currently be sleeping! I can’t be introspective while I’m asleep…and my brain hurts less. *grin*

Introducing Bob



What? Yours actually holds spices?



 Do you ever have one of those moments when the proverbial giant light bulb over your head comes on? For that moment, everything is so clear and the Universe gives you a slap up-side the head and says, “Wake up, dork!”

 Yeah…I just had one of those…sort of.

 Despite the fact that the header of this thing says, “LIVE well…LOVE much...LAUGH often despite chronic illness”…well, I haven’t been. Oh, I laugh constantly (when I’m awake) and I do love much. But, the living part seems to have gotten past me the last month…or two…

 I realized tonight that I have pretty much put my life on hold, pending a diagnosis. “I’ll start exercising as soon as I know what is wrong with me so I can follow an appropriate program.” “I’ll figure out the work situation as soon as I know what treatment is going to involve and how much energy I am going to have.” “I’ll start eating better and FINALLY quit smoking after the stress of not knowing is all gone.”

 Well…here’s the bare-bones truth…they may never figure out what’s wrong with me! They may be more than capable of treating symptoms and some of the root causes, but I may never have an actual label. Or, I keep reading that four years is not an uncommon amount of time for it to take to arrive at a final diagnosis. I DO NOT have four years of my life to give over to waiting! Even if I did, I wouldn’t want to!

 I would much rather start something small exercise wise and discover my body doesn’t want to play nice, than sit on the couch and wait…Besides, they could already ID me by matching the butt-prints in the cushion to my keester as it is! (Off work a little over a month and I’ve already put on 15 pounds. Not much in the grand scheme of things, but the ol’ hip joints do NOT approve…)

 I think I’m going to have to post a few sticky-notes about the house reminding me that my life is now…not dependant on a diagnosis. We are all pretty adamant about the fact that we are people who happen to be ill, not illnesses who happen to be people. I’m ashamed to say I’ve not been acting that way.
 I would LOVE to type loud-and-proud that I will NEVER again slip into this mud-hole, but I know better than that. (After all, I currently have very little short term memory. *grin*) I’m sure I’ll slip and get dirty on a regular basis. Ya know, it’s far too easy to over-focus on illness when your day is somewhat timed around what meds you take when, your month around what Doc appointments are when, and your spice rack gets put to new uses. (See photo) That’s OK though. That only proves I’m human.

 No, I will never get my head pulled out of my own hindquarters enough to become a motivational cheerleader, helping others work through this any easier…but I can do my best to make my life a little livelier. I can try a little harder to dance solo once in a while, leaving illness in the wings. I can remind myself (and maybe a few others) that it’s not the falling in the mud that’s the important thing…it’s all in how you get back up and clean yourself off that’s the memorable part.
 And if all I’ve been waiting on is a label, a name for this thing…Fine! From this day forward, I shall call "it" Bob!

I Miss Kindergarten!

 For the last couple of weeks I’ve been playing on various and sundry Social Networking sites…and this morning something hit me…

 I miss Kindergarten!

 In Kindergarten, making friends was easy! You simply walked up to someone and said, "Hi. My name is Chris. Do you wanna be friends?” They usually replied with something like, “OK. Let’s go play.” That was it! Easy-peesy!

 Now…well, that approach will get you all kinds of weird looks and responses! And trying to “make friends" on-line can be even worse! Due to the wonderful anonymity of on-line life, the ability to create an entirely new persona, complete lack of human to human contact and not being able to “hear” the playfulness, sarcasm, or humor in someone’s voice…never mind all the stories in the news about on-line stalkers and serial killers…well, people are paranoid as all get out!

 I also discovered I become exceedingly uncomfortable when I’m commenting on a post on ANY site. After all, I’ve read their blogs, status-updates, tweets, poetry, etc…I either feel like I know them or I’m a Peeping Tom. Either way, leaving a comment or sending a friend request can become something like asking a stranger to the school dance…it can leave you feeling vulnerable and open to rejection. What if they don’t “reply?” What if they don’t accept my “friend request?” (Worse yet, what if they “block” me!)

 And joining an on-line group can be even more terrifying! It’s like the new kid in school sitting down at the Cheerleader’s table at lunch! These people all seem to know each other…so many threads occurring amongst friends…how do I jump in? Should I post an introduction? What if it’s met with “silence?”
It’s damned hard! Especially if you’re already in a spot where you feel isolated or unsure of yourself. (Chronic illness can do that to a person from time to time.)

 Well…after “lurking” for a while…I just jumped on in! I realized the only way I would ever feel part of any on-line community was to participate in it! So what if I was the nerd at the cool kid’s table. (Not like it’d be the first time! *grin*) Besides, everyone was a “newbie” at some time. These on-line friendships didn’t magically appear, they were forged through shared experiences and common interests…through posts, blogs, and status updates. They evolved over time and through communication. The only thing stopping me was me!

 There have been several comments left that have gone unanswered. There have been status updates no one replied to or “Liked”. There have been “tweets” no one has “retweeted”. But…(Here’s the cool part!) there have been new “friend requests” sent to me. There have been those happy little “Like” buttons clicked. There have been group invitations sent…and I’ve actually made new friends!

 So…here goes nothing! Hi! My name is Chris. You wanna be friends?
(I'm also on FaceBook as Chris Dean and Twitter as pixiecd13 since I'm techno-impaired and can't figure out how to add a stupid link!)

"Nailing" It!

 This is going to be a bizarre morning post…I promise!

 I’m pretty sure I’ve mentioned before that my brain never stops moving, questioning, looking for answers…some missed clue that would end up being the key to an “Ah Ha!” moment. Well…maybe…

 (Here’s the bizarre part!) I noticed a couple of years ago my nails had gone all “funky.” They developed these lines running from tip to cuticle and more pronounced ridges running from side to side. First, it was only a couple of nails on each hand. Then, little by little, every nail on both hands developed them.

Gettin' creative...
using a pencil to try to highlight the
rigdes and grooves.

 So, I kept them painted with BRIGHT colors with layers of glitter over the top to hide the “mutant” nails…(Also good for hiding dirt and grease from work!)

 Next nail-oddity…about a year ago, several nails began to grow “down” over the tips of my fingers. Not the whole nail, mind you, maybe just one side…maybe just the middle…it’s kinda like I have Salvador Dali nails! Once again, obnoxious colors and more glitter were good distractions.

 (Keep in mind I’m on my 10^th Doc and they’ve ALL looked at my fingers and squeezed and “flicked” the nail…)



Savador Dali nail with ridges.



 This morning saw MORE insomnia, so I ended up researching nail abnormalities…just for the heck of it. Guess what? I found TONS of info on the lines and grooves, as well as the Dali growth pattern. (They even have actual medical terms…Beau’s Lines, Muehrcke’s Lines, Telangiectasia, Koilonychia, Longitudinal Bands…) You know what else? Tons of info on the fact that my "funkiness" all points to connective tissue disorders and autoimmune disease!

 A total “WTF” moment!

 Now..I know I am an oddly curious woman who currently has way too much time on her hands…but WHY hasn’t any one of the ten different Docs noticed or asked about it? (Again, Dr. House would have caught it...Caught, diagnosed, and cured…all in under an hour! *grin*) Is it my fault for not asking directly? Silly me…I figured they were playing with them so if it was a problem, they would have…Oh, I don’t know…maybe MENTIONED IT!

 I guess the point of this mornings’ mini-rant goes back to one of my core beliefs for ANYONE dealing with a health issue of ANY kind…know your body! Ask questions! And if you don’t get answers (or even if you do) do some RESEARCH for yourself! Yes, there is a ton of CRAP on this amazing tool called the internet, but if you dig deep enough, you’ll eventually find what you’re looking for.

 Because, after all, no one knows your body better than you and we are our own best advocates! (Now…where did I put that nail polish…)

The Happiness In Sleeping!

 Whoop! Whoop! I actually got SIX hours of sleep last night!

 We went shopping yesterday and I found an affordable “memory foam” mattress topper…and it worked! I could lay in bed without feeling like I was sleeping on top of jagged rocks. I am seriously considering getting another one and cutting it down to fit the couch and my chair at the dining room table…of course, then I’d NEVER get off the couch…*grin*

 More good news of the “weird” variety…it’s official, I’m a mystery! Which means Dr. X is INTERESTED in my “case.” I swear, I feel like I’m dancing with the Devil…

 No, the guy isn’t evil, we just do NOT play well together! He’s a Grade A control freak…OK, and so am I! (There, I admitted it!) Patients also should never speak unless directly addressed, thus giving him time to think. And we are NEVER allowed to contradict his orders…(maniacal giggle working it’s way to the surface right now) But I swear…he’s the closest thing to a Dr. House I’ve come across, he just lacks House’s likeable side…(Think about that one for a moment!)

 He was uninterested last time I saw him, convinced it was the neck thing. Well, I broke down and went in early over the uncontrolled asthma. (Did you know breathing isn’t optional after all?) It seems my blood work last time was “abnormal” and when you combine that with the Neurosurgeon’s findings, well…now I’m interesting.

 So…more new meds, chest X-ray, more blood work…I told my daughter that by the time they get done with all the testing I’ll be completely magnetized, radioactive, and from all the various dyes shot into my veins and ingested orally for the CT scans and MRIs…well, I’ll glow under black lights! That’s right, I’ll be AWESOME at Raves…and I won’t even need body paint! The Human Glow-Stick…

 Since I actually have more than a couple of hours sleep under my belt, I’m hoping to get a teeny-tiny bit of housework done today…or I could be naughty and play on the computer, spending time checking out the blogs that the Liebster was passed on to…hhmmmm…tough choice. *grin* (Or, be a good girl and do a little of both, moderation and all, right?)

 Whatever I do, I’ll try to do it with laughter and grace. (Attitude wise, because there’s no hope of “grace” in the movement department!) Because today is another opportunity. For what? Who knows! But that’s part of the fun of it all…the mystery of the moment!