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!

Leibster Award

 I am so excited and honored! Yesterday morning I got the word that Mary, from "Shuffling Along With Parkinson’s Disease" gave me the Liebster Award! Thank you so much!

 Her kind words of encouragement and the fact that it’s given by another “blogger” make it even cooler.
Here’s the rundown…

 "Liebster" means favorite or beloved in German, and this award helps to draw attention to blogs that aren't too well known.

Here are the rules for this award:
Upon receipt of the award, one is to:
1) Link back to the blogger who gave it
2) Paste the award on the blog
3) Choose 5 blogs to pass this award to (they must have fewer than 200 followers)
4) Let the recipients know about their nomination by leaving a comment on their blogs.

 So…to pay-it-forward, the blogs I have chosen to award the Leibster to are:

 1) “Crippie’s Corner” Crippie, AKA Nicole, is an amazingly positive, funny, and talented young woman. I love reading her up-beat posts, plus she loves guinea pigs!

 2) “Peachy Pains” Peachy’s blog description says it all, “Be the change you wish to see.” She may have a chronic illness, but she is chronically up-beat!

 3) “From The Mind of a Writer” Celina Mills is a young writer with a lot of talent! (OK, she may be my daughter, but if you ask her, she’ll tell you I’m her biggest critic, so this choice really isn’t biased!)

 4) “Chronic Phoenix” I haven’t been following her long but Amber is a fun-loving, positive person with a big heart! Don’t believe me? Check out her post “Crazy Sock Day”!

 5) “Chronically Creative” Emily may suffer from several chronic illnesses, but being a “downer” is not one of them! Her creativity knows no bounds and neither does her generosity, just check out her “Random Acts Of Blogging Kindness: Recipient #2” post! It brought tears to my eyes!

 These are the sites I turn to, along with Mary's, to help when I’m a little down, to learn new artsy-craftsy things, and restore my faith in people when it starts to slip a bit.

 Thank you Ladies, and thank you again Mary!

Crochet And Being Heard

 Good Morning! Yes, last night I got a little over 5hours of sleep and feel like a “normal” person…or as close as I get. *grin*

 I spent yesterday in a sleep-deprived fog, but did something I haven’t done in FOREVER…I crocheted! I don’t even care that I don’t have the use of my right thumb or left shoulder today…I did something I enjoyed! (Does happy dance…until she fall begins listing to the left..)

The fun scarves I croched yesterday. Extra long
for extra fun!

 I made a simple pattern called the Bean Blossom Scarf I found on Mr. Micawber’s Recipe For Happiness {Living graciously on limited means}. I used some variegated, lace yarn I bought last year and had NO IDEA what I was going to do with it and stranded it double with yarn I spun several years ago. I started a second one, double-stranded lace and sock yarn. I plan (as soon as I can hold the hook again) to “combine” the two scarves (VERY skinny and lightweight) during the finishing process.

 I am just so excited that I made something besides more medical bills!

 And speaking of medical bills (mini-rant allert!)…I did something else yesterday that some may find “wrong” or “distasteful” but I choose to view as thumbing-my-nose at mediocrity and those in positions affecting the course of our heath care who simply can’t be bothered to pay attention!

 (What the heck is she talking about?) I received a letter (OK, several) from our Insurance questioning all the tests and various and sundry Doc visits. They wanted to know who “Mr. Blah” was and why they needed to pay him. They also wanted to know if I’d been in an accident or injured at work, making my claims someone else’s problem, but I digress.

 Mr. Blah happens to be the person who read and interpreted the MRIs of my neck and spine. (Remember? The report that “showed” I had “irreversible” nerve damage?)

 I pleasantly explained who he was and why he was requesting payment…Then I politely informed them that were I in their shoes, I would contest his claim to payment. After all, his misinterpretation of my MRI cost them visits to an Orthopedic Surgeon and a Neurosurgeon. Also, it delayed the right Specialist looking in the right direction for several months. (Keep in mind, I’m of the opinion that payment should only be received if you DO YOUR JOB and not for practicing uncaring, drive-thru medicine…but again, I digress.)

 Imagine my surprise when the Lady on the other end of the call took down all the pertinent info and opened an “Inquirery” on the situation.

 Yep, I’m aware that Mr. Blah sits in a semi-dark room all day with thousands of frames of film blurring past his eyes. Mistakes are bound to be made. But we’re all held accountable for our mistakes, so…I used my voice to make him accountable for his.

 Do I think anything will come of it? No. Will he loose his job? I certainly hope NOT! Will he even get the proverbial slap on the wrist? I doubt it. But, I no longer felt powerless!

 Because, let’s face it…all too often we end up feeling at the mercy of our bodies. We do as we’re told with too few asking us what we WANT. Tests…we’re prepped, positioned, poked, prodded, measured, and sent on our way. Doctor’s visits are too frequently “wham bam, thank you ma’am” experiences. And, of course, EVERYTHING is done on their schedule…so it can be too, too easy to end up feeling like a passive observer in your own health. And that one act of making my opinion known…even if absolutely NOTHING comes of it, gave me a bit of my power back.

 So, “THANK YOU!” to the woman on the other end of the 1-800 number who took the time to listen to me and allow me the opportunity to be “active” and not so darned “passive”…

 (And she steps down off the soapbox, only tripping a little on the way…)

Sleepless...

Dreaming of the days when I could sleep.
*sigh*

 Today I have decided sleep is for the weak! I’ve been up since 2:00AM and the prognosis of sleeping anytime soon is NOT looking good…The funniest part is, my meds are supposed to help me sleep!

 The world is a QUIET place this early with not much of anything to do besides randomly surf the web…or watch infomercials on TV. How’s that for excitement? I thought about a bit of light cleaning, but I’m afraid the noise would wake the rest of the house.

 So…what do you do when sleep fails you? Outside of sleep aids, how do you achieve the illusive Stage 4 deep sleep? How long can you go before your body says, “I quit!” and you kinda fall over wherever you’re at?

 I can actually sleep better during daylight hours, with the house full of chaos and noise. But even then, it’s not a DEEP sleep. It’s the sleep where your body conks out but you are still pretty much aware of what’s happening around you…*sigh*

 The worst part of all this is I’m putting on weight like crazy, because when I can’t sleep I eat…sugar. LOTS of sugar! (Yep, I know. Completely counterproductive.) That, and I know lack of sleep will make all the pain and symptoms worse! But, if you’re dead-set against sleeping pills…where do you go from here?

I've been trying DESPERATELY to avoid any more visits to the Doc before my Feb. 6^Th appointment…but I may have to throw in the towel and call…or I could just keep going and wait for the sleep-deprivation hallucinations to kick in…could be fun?

Knitting Things Together

She insisted on having her own "pixie", Pixiecel.

 Whew! I finally got it done!

 For a little over a month now, my daughter and I have been discussing writing a music blog together. Since we both love to write and we’re both HUGE music-junkies, it seemed a good way to spend a little time together doing something we both enjoy. Kind of a bonding thing.

 After a few days of fighting with our crappy internet service and my crappy tech knowledge, we finally got the site up and running…she is SO excited about it! The only thing left to do now is make our T-shirts…

 I’ve also been spending WAY too much time on-line! I found some awesome new sites…The Brave Girls Club, Last FM, Blip FM…and have been playing. (Oops!) But the cool thing is, it’s a nice distraction from the havoc the WONDEFUL Indiana weather is currently wreaking on joints and energy levels. 32 degrees one day, 54 degrees at 6:00AM the next with it dropping to 34 by 6:00PM…my joints feel like their full of roasted marshmallows.



Lace socks!



 Besides, there is only so many days you can spend reading about and researching chronic illness before to start to feel like it’s all you are…That would be where the music blog and web-sites are REALLY handy! They reminded me there is so much more to me. I’ve even been considering checking out a knitting social site, Ravelry, since I am a recovering knit-a-holic. And, I might point out, I’m only recovering because my hands are currently off-line! It was PAINFUL to see and handle all the beautiful yarn and put my needles away when I cleaned the "Corner of No Return" in our bedroom…*sigh* Maybe I’ll set aside an hour this afternoon and attempt something simple with big needles…

A throw and pillow set I knit for my hubby.

 After all, knitting is good for the soul! There is nothing more satisfying (for me, anyway) than taking two sticks, a ball of string, and creating something beautiful and functional! It’s always seemed like some kind of primal magic to me…Magic that connects me to my Grandmother, her Mother, and her Mother…Women who knit because their families needed socks, scarves, hats, and mittens for the winter, They knit because they had to, not because it was relaxing or soothing. They knit because they loved their families and wanted to keep them warm and safe from the elements.

 I knit like a fiend when my Mother was sick. I knit her socks, hats, and soft shrugs to help warm her when the Cumadin thinned her blood to the point of perpetually cold. It kept my hands busy during long days in the hospital and then during her hospice. Projects and gifts that are now in a drawer in my bedroom…I take them out occasionally and smile when I remember the conversations and laughter that occurred while the items were being made and worn. My inner-mystic likes to believe there’s a little of that love and laughter caught in every stitch and it gets released every time the item is worn or handled.

Celina's yoga socks. (I know, it's a little fuzzy,
but you get the idea!)

 I guess the point of my ramblings today is, yet again, reminding myself that I am more than illness. Whatever is causing my body to rebel is not WHO or WHAT I am! I’ve always believed my body was simply a home for my soul…right now it’s just kind of a “fixer upper”... My soul is NOT sick or in need or repair. And THAT is what I need to remember more often. CHRIS is not illness…CHRIS is a nutty music-junkie, obsessive knitter, Mom, wife, friend, animal lover (or sucker for a furry critter), “Domestic Poultry Goddess”, lover of cheesy zombie movies, and all around big kid who refuses to grow up!

 And I like it that way!

Hair Today, Hat Tomorrow

 Today I have a confession to make…I waffled. I broke down and bought a pack of smokes. *shame-faced sigh*

 I could attempt to defend my choice by saying the past few days have been BAD pain days and smoking is a distraction…but in the end it was a choice. (OK, a BAD one, but a choice…)

 I’m not going to beat myself up, since I can always find something else to beat myself up over…but I know I will quit, I will fail, I will jump back on the horse and ride it all the way to Non-Smoker Town!

The dreaded "tequila incident"...Remember, bad hair
is better than no hair!

 On a more humorous note…last week I was combing my hair after my shower and noticed the light “glinting” off something on my scalp. I leaned in close enough my nose was touching the mirror (darned eyes) and what did I see? (Besides a good inch of roots…) White hairs! Yep…sprinkled all through the mousey-brown roots were white hairs. Middle age felt it necessary to remind me I am indeed NOT 18 any longer, despite what my brain may think!

 For a few days I contemplated just “going with it”, then realized that past that inch of roots, the dyed hair was distinctly darker. (That would have made for an interesting look!) So, the decision to “dye” was made. I figured my hair is falling out anyway…it might as well be all one color when it does.

 The kit was purchased last week and the free-time presented itself yesterday. Cool!

Problem #1) The kit I purchased was a lighter shade than the one already on my head. (Hey! The box said it’d tone the dark brown down to a rich red color…)

Problem #2) The kit failed to remind me that previously dyed hair reacts differently to a lighter dye than natural hair. Plus, the more dye layered on the strands, the LESS it responds.

The last of MANY srip-kit
mishaps!

 Oh, you guessed it! I look like a calico cat! The roots are a lovely ginger red, with honey-toned highlights. The middle part is a warm, mahogany color, and the last 2 inches…BLACK! To make matters worse (or funnier) it was one of the kits that had the “brush-on highlights” you add after the first layer of dye…well, if you’ve got not-so-steady hands and move slower than the average beautician, you end up with some interesting “color chunks” where the first applied is three shades LIGHTER than the last. You can literally follow the progression of the highlight application all around my head. (I kinda got distracted reading a book and let the timing go a little LONG…)

Excuse me Beauty Parlor Lady,
this does NOT look like the picture!

Truthfully, it’s not the worst thing I’ve ever done to my hair…not by a long shot! At least this time there are no polka-dots…(That one really did happen!) Let’s see…worse hair-disasters? The dreaded “tequila” incident…the horrible “Green Day FUBAR”…any of the MANY strip kit SNAFUs…mistakenly thinking a beautician could look at a photo and realistically re-create it on my head…(Just think drunk with weed-whacker.)

But, that’s one of the things about hair…it keeps growing back. (I hope!) I will probably end up getting another, DARKER kit to cover-up the calico-effect. Or…I could just go with it! My daughter (always supportive and optimistic) tells me I look like an Anime character and it’s REALLY cool! Although, she REFUSES to let me do the same to her hair…*grin*

For the record, chickens
do NOT make good hats!

Of course, at the rate it’s falling out, I could just wait a month or so and buy a wig. Then I can REALLY get the hair-do I always wanted! I can change the color, style, and length as frequently as I change nail polish.

Or…I may just start collecting hats.

Every Moment

 “Every Moment Matters”

 I have mentioned before that I have tattoos…LOTS of tattoos! And each and every one of them is a story, a memory, and a lesson.

Add caption

 For years I refused to get a tat where it couldn’t easily be hidden. I was concerned about the worlds perception of inked women, ink in the workplace, or embarrassing my hubby in public by being overly “colorful.” A few year ago…that all changed.

 I woke up one morning and decided some things are too important to me to “hide.” Some things should be out in the open where I am given a constant reminder of why I dropped hard earned money and invested time and pain. For instance, on the backs of my hands I have the names of my children and my hubby. Actually, my sweetie's name appears twice…at the beginning and the end, each time with a tiny heart. Why? Because my heart begins and ends with him. (Yep, cheesy but true! *grin*)

 You see, no matter what I am doing, either at home or when I was working, I am constantly looking at my hands. When I start to get stressed or bent out of shape about something, I see the names and remember exactly WHY I am doing things, and everything else is gravy!

 Around my right wrist are the words “My Life My Way.” These were tattooed there at the beginning of my “illness odyssey” as both an affirmation for myself and a sort of warning to other people. (And I wonder why I’ve been labeled “non-compliant” and “difficult” by more than a few Docs…)

 On the inside of my right bicep I have a pink Celtic knot with “I Live, I Laugh, I Love” in Gaelic written on the inside of the curves. I am from a long line of Irish women with a little Cherokee thrown in for extra-special stubbornness, so both the knot and the language are special. Why Pink? (The tattooist asked this as well…and laughed at the answer…) If I had to give "hope" a color, it would be pink and sparkly. Unfortunately, they do not of yet have sparkly tattoo ink, so I had to settle with just pink.

 I have many others placed about my person…14 to be exact. All of them have deep meaning to me, all but one is an original, and most are my designs. (Yep, I’m pretty colorful!) But they are also a form of scar, a souvenir of a time and place in my life. You can think of them as the ultimate, permanent sticky-notes for the chronically short-term memory challenged.

 Sadly, (or maybe not from the hubby’s point of view) as my body has begun to “change” I’ve noticed the tats are no longer the “simple” needle, ink, and pain experience they used to be. My body has its own ideas about the matter…my lovely pink knot…my body was evidently NOT a fan of the color and has “pushed” most of the ink back out. Actually, I’ve had to have the last three re-inked for the same reason…my body rejects the ink.

 The last one I got, ravens on the back of my neck, I had such a violent reaction to I thought I was going to have to see the Doc…lymph nodes the size of golf balls…neck so stiff from swelling it wouldn’t turn for three days…fun times!

 So, this year for Valentine’s Day, I will ask my sweetie for what will more than likely be the last tat of my life. (Yeah, I know…even after the last one I’m stupid enough to try one more time! Remember the earlier comment about exra-special stubborn?) Across the back of my left wrist, to match the one on my right (hey! I’m all about balance…even if I have none when I walk!) I want the words “Every Moment Matters”…because it does.

 And, all in all, that would be the best gift I could give to my kids…the knowledge that Life is to be lived…not only on your terms, but also moment by moment. And every moment matters!

Music And Possibilites

 This morning it’s not just cold…it’s COLD! Two days ago it started out just below 60 degrees…what the heck happened? You have just GOT to LOVE Indiana weather…

 So far, still NOT smoking! (Whoop! Whoop!) I will not lie though…I REALLY want one…I am so glad my family is being so supportive and tolerant. If they weren’t I know I would have waffled by now and bought a pack.

 This week I’ve entered a new contest. I’m seeing who can shed more….the cats, the dogs, or me. So far, I think I’m taking 2^nd place, right behind the cats! I am SO glad I bought that hat last week…

 This has been such a surreal week…the weather flip-flopping, an eerie silence with a lot of the people I “talk” with on-line, and the feeling that it’s taken two weeks to get from Monday to here. (Of course, some of that may be due to nicotine withdraws.) Oh yeah, and my Muscovys have started laying eggs…two months early! (Again, thank you Indiana weather!)

 At least today is grocery-day so I can stock up on crunchy veggies to snack on and STOP munching on chips and cookies. Yep…munchies, the ultimate evil of smoking cessation! At least I was smart enough to take the battery out of the bathroom scales. (*grin*) The less I stress about weight gain, the better my chances of sticking with this. That, and I keep reminding myself that whichever answer comes up on the “*wheel of possibilities,” the literature all tells me that smoking will make everything worse.

*Wheel of Possibilities- I suggested to the Neurosurgeon purchasing a dartboard and placing the name of each possible diagnosis around the board. Then, instead of sending me to more Specialists or running more tests, I could simply have the Doc throw a dart and whichever one he hits, we begin treatment! (Oh, my wicked sense of humor…)

How we "suit-up" and "work" in cold weather.

 Switching gears to my music junkie self, I have had two songs stuck in my head all week, both I highly recommend when you find yourself in a bit of a “funk” or facing a mild “blue” spell. They have yet to fail to put a smile on my face and lift me up just enough that I can see over the edge of Blahs-ville. “Merry-Go-Round” and “Sweet Spot,” both by Antje Duvekot. Give them a listen!

 It’s approaching time for me to suit-up and head out into the cold to take care of my feathered friends…I’ll leave you with a few words from Ms. Duvekot. Enjoy every moment of today!

“Once you stood before a mountain

Now you find yourself surprised.

This is the sweet spot of your life.

This new view compares to nothing,

Gone the hardship of your climb.

This is the sweet spot of your life.

And it would seem the ice is melting,

Seems you’ve come in from the cold.

This is the sweet spot of your life.

And all your streams they are now fuller

Than what the river banks can hold.

This is the sweet spot of your life.

So you must hold these days like treasures,

In a jewel box in your heart.

This is the sweet spot of your life.

For you know while they are most precious

Into an old tree you must carve them.

This is the sweet spot of your life.

They can only stay a moment,

When you dive into the blue.

This is the sweet spot of your life.

‘Cause by the time you hit the surface,

It has rearranged you.

This is the sweet spot of your life…”

Tea Party, Party Of One

My totally awesome sweetie!

 Today I’m gonna get a wee bit serious…Yesterday my dear, sweet hubby and I had a conversation that I thought I needed to share…well, not the actual conversation, but more or less the topic.

 Over the past several months, I have had several “episodes” of feeling completely alone and isolated. No, I honestly wouldn’t say I was or am depressed…but there are times I just feel…alone.

 Now, that being said, I’m almost 100% certain I am NOT alone in these feelings. I’m fairly certain anyone who has dealt or is dealing with a chronic illness has “been there, done that!”

 I tried to explain it to my apparently-hurt sweetie like this- When you’re pregnant there are always women who are pregnant or have been pregnant you can turn to for advice or support. You broke your arm (or toe *grin*), there’s someone who can commiserate. You’ve got the flu, you can call your best buddy for empathy. You’ve been diagnosed with a chronic illness, there are tons of Support Groups and Chat Rooms you can go to for support and encouragement.

 Dealing with “What the heck is wrong with me!?!”…well, I have yet to find a Support Group or Chat Room for that one! Without a name, you don’t know where to go, who to turn to for advice…you're in Limbo.

 Yes, I understand I am NOT the only one who’s been here or will be here. Yes, I know I can talk to my hubby and my friends and they do give me TONS of love and support. But…they can’t identify. They can’t really understand. They can’t say, “Oh, honey! When that happened to me, *insert advice here* helped me get through it!” because they’ve never been here.

 And that’s where you end up feeling like you’re standing on one side of the looking glass and they’re on the other side looking back…I have become Alice, surrounded by all the “eat me” and “drink me” bottles and pills. Every morning when I rise, I never know what new “absurdity” my body will toss at me. All I know is I’m attending the Tea Party “party of one”.

 So how do you get past this…I can’t force the Docs to figure it out any faster. (We all wish that one would work!) I can’t wave a magic wand and place someone in my shoes for an hour to promote understanding. (Not sure I’d do that to someone anyway!) How do I step back through the Looking Glass?

 Honestly, that was one of the BIG reasons I started this Blog. I know I’m not the only one out there caught between “maybe, maybe not.” I know I’m NOT alone in the Land of Medical Limbo…

 I’ve written before about my idea for the “Medical Mystery Dinner”…I even joked about it with my Doc! (She thought it was HILARIOUS!) But, it hasn’t gotten off the ground yet. *grin*

 So…for the readers in the crowd who have already been through this, how did you do it? Where did you turn for understanding? Any good web sites you could recommend?

 Maybe I could pull a first-half-of-“Fight Club” with the local Support Groups…What d’ya think?

I Get By With A Little Help From My Friends

  I need a clock with BIGGER NUMBERS! I awoke this morning and looked at the clock…I swear the thing said 5:30. So I rolled out of bed and started the coffee and my morning. I had my first cup-o in me before I noticed the computer screen said 4…NOT 5! Yep…I either need to start sleeping in my glasses or get a new clock…

 Since I’ve been up an extra hour this morning, I’ve been thinking about yoga. 15 years ago, when I had what I now know to be my first “flare” of Mystery Illness, none of the Docs could help me with the cause. I spent days online doing research. I found all kinds of articles about the adverse effects of this chemical or that food…the benefits of this exercise or that physical regimen…so I said, “F#@*k it all!” and eliminated EVERYTHING from my diet and began a daily yoga practice.

 I quit smoking (something I currently need to do again…SOON!), began eating a strict organic, vegetarian diet, and dropped my beloved Diet Dr. Pepper and drank only water and green tea. Sounds crazy, I know. But I think a lot of you can identify with that borderline desperation when visit after visit, the Docs come up empty!

 The thing was, after a month or so, I began to feel better. Was it the diet? Was it the yoga? Who knows! After a year of living like this, I ended up going back to work waiting tables and bartending. Yep! You guessed it…little by little my lifestyle slipped back to its former bad habits…lousy diet, smoking…all of it.

 Over the years, as they symptoms would pop in-in-and-out of my life, I would make a few changes, but mostly I turned back to the yoga. The gentle stretching felt great and it quieted my mind. Eventually things would get “back to normal” and I would end up sleeping in and forgetting the morning exercise routine.

Monkey Yoga

 So…yet again, I’ve been thinking about starting it back up. The last time, about 6 months ago, I was cut short in my practice by a broken toe. (Hey…when you have NO balance or depth perception, thing “magically” appear in you path!) I had been waiting on starting out of concern about the “neck” issue. After all, if all “this” was being caused by pinched nerves and vertebral compressions, I wasn’t sure yoga would be a safe call.

 Well, yesterday the Neurosurgeon put those worries to rest! My spine is PERFECT for a woman my age. The MRI showed him a patch of arthritis and a few bone spurs. He told me to forget about my neck because there was not a thing wrong with it that would cause me any problems. (Doin’ the happy dance!) He also told me to consider looking for a new Neurologist…

 I left his office with appointments with  ANOTHER Neuro and a Rheumatologist. Yep…we’re back to MS and Lupus as the big contenders in the game of “What the heck is wrong with me?” *sigh*

 So I want you to do me a BIG favor…HOLD ME ACCOUNTABLE! I have 23 cigarettes left in my house. After that, I’M DONE! Cold turkey…PLEASE question me on my resolve…send e-mails or random comments asking me if I wimped out or am holding on…(Thanks in advance!)

Kitten Yoga

 As for the yoga…that one’ll take some thinking and work. After all, picture doing a downward facing dog when your hands and forearms won’t hold your weight. (Ouch!) Or try doing some of the poses that require balance when you’re needing to use a cane to keep from falling over. (Thud!) Maybe I’ll start with the seated stretching exercises…

 Since they can only try to treat symptoms until they figure out the actual cause, I’d LOVE to hear what worked for you before you were diagnosed.

This One's For The Girls

 Today has been an amazingly CRAZY day! After stressing all night about the “doom and gloom” aspects of my appointment with the Neurosurgeon today, they called while I was outside doing the morning bird work and left a message about needing to reschedule for Wednesday. When I called back, they instead moved me up to this morning.

 My first instinct was to share the news. (First my disappointment at needing to reschedule, then my excitement at being moved up.) Since my hubby was still sleeping soundly in our bed (lucky dog!) I instead turned to my non-marital best friends…my Sisters!

 I have a brother who is five years younger than I am, but was never blessed with female siblings. But that’s not what I’m really talking about here anyway.

 It’s odd, because I’ve always been more comfortable hanging out with “the guys”…so imagine my surprise this morning when I realized it was my gal-pals I was dying to call and share the weird excitement of my early-morning news. No, it wasn’t because they’re women so are more nurturing than guys. No, it’s not because we’re women and enjoy gossiping more than guys. No, it’s not because they’re women and usually get up earlier than guys. It was something deeper than all that.

 My group of Sisters is as an eclectic mix of Women as you could ever think to find in one place. They run the gamut in appearance and socio-economic backgrounds as well as places of origin. (I won’t even mention the age range…for a fee…*grin*) They have never all been in the same place at the same time (a few have yet to even meet each other) but they all have one important thing in common…all of them have been constants in my life, either in person or in spirit, for over 20 years!

 One after another, they have stepped into my life out of the shadows where they waited to be needed at just the right time. One after another, they have been there through thick and thin. One after another, they have laughed with me, cried with me, cussed with me (and occasionally AT me!), and answered the younger-years’ late-night phone calls...and a few have even responded to those calls by venturing out into the middle of the night to give me a ride home.

 Only a higher power will ever be able to figure out exactly why it is we’re friends…meaning why the heck they have put up with me all this time! I’d like to believe I’ve been close to as good a friend to them as they have been to me, but the fact remains…We surpassed “friends” LONG ago. They are my Sisters. They are my confidants, my comrades, my cohorts, and my co-conspirators.

 So...

 To driving aimlessly around for hours, STARVING with full bladders, because neither of us can make up our minds about where we want to eat, thanks to the tall brunet, Ms. Moon!

 To all-night Yahtzee! marathons with all-night pots of bad coffee and cheesecake at the local Waffle-dive, thanks to the fiery red-head, K.

 To sharing Indian food, tofu, and herds of kids running amok…all while knitting and sipping good, Irish beer, thanks to the petite blonde, B. Rhanie.

 To keeping each other sane, lots of belly laughs, killer pineapple upside-down cake, and always being there with a soft shoulder and a warm smile, thanks to the “height impaired” brunet, Princess Buttercup.

Thanks Ladies!

Wood Smoke And Memories

Ducks from years past playing in the snow.

 Just came in from the morning bird work…it is friggin cold!

 I must admit, there is something both sweet and oddly beautiful about the waterfowl playing in their pool while surrounded by ice and snow. Every time I break the ice off a pool to refil it, I can’t help but think about my favorite “living with birds" book, “Enslaved By Ducks” by Bob Tarte. He lives in Michigan, so deals with MUCH worse weather than I and writes extensively (and accurately) about the “fun” of mid-winter pool-filling.

 A few days ago the weather here finally decided it was time to act season appropriate and the temp took a nose-dive to somewhere in the neighborhood of zero degrees. This led to a new discovery…my body will no longer tolerate cold. *BLAH!* Yep, it seems if I’m exposed to anything under 30 degrees, my brain “shuts down” and the hand tremors go into high speed. (Thank goodness for spell check!) And we won’t even talk about the pain amplification factor…I guess no more snowball fights or snowmen for me. *sigh*

My Grandparents, Andy and Jane Eggers
on their honeymoon.

 Last night we started the first fire of the year in our wood burning stove. It’s nice and toasty in the house, plus I LOVE the smell of a fire…ah, nostalgia! It takes me back to hanging out with my Grandpa while he sat by the stove. He’d sit in his chair for hours, cracking walnuts and telling me stories about his youth, his Dad, and his Grandpa. It turns a good, warm fire into a link through time to family I only knew through stories…my own personal time machine.

 I’m thankful my kids were around to play around my Grandpa's feet while he peeled apples for them and told them the same stories he told me so long ago. It was truly an all-to-rare gift they received, whether they’re aware of it or not. So many have fallen into the habit of taking their parents and grandparents for granted and miss out on so much wisdom and history…(OK, I’ll climb off the soapbox now.)

My Great Grandpa, William Eggers.

 Of course, there are some things I don’t appreciate about a good fire…such as the wonderful blister on my finger. I guess that’ll teach me to be lazy about walking across the basement to retrieve the fireplace poker! Also, I’m not the world’s biggest fan of running outside at night to get more wood because I forgot to do it earlier…Thank goodness there are teenagers around for that now! *grin*

My Great Great Grandpa, Joe Eggers.

 At least the blister is on a heavily scared finger, so the pain is minimal. That, and I was lucky enough to have a bottle of lavender oil in the cupboard.

 As for now…time for more coffee, a doughnut or two, and some cuddle time with the kittens!

Perception VS Reality



The "real" Pixiecd at (on) the computer desk.

  Last night my sweet hubby sent me a text on his lunch. He was worried about me because he thought I was looking tired and a little worn down before he left for work. I wasn’t really feeling that much more “tired” or “worn down” than usual, but it got me to thinking…

 For the last week I have pretty much lived in sweats or jammies. (Hey, they’re warm and comfy!) I also hadn’t done anything with my hair besides pull it back in it’s funky little ponytail or put on any make-up. So, this morning I conducted a little experiment. I showered and dressed before he got out of bed. I put some effort into my hair and put on a minimal amount of make-up. When he woke up, I asked him if I looked as tired today. He smiled wide and told me I looked a lot better! The look of relief on his face was worth the extra 15 minutes of effort on my behalf.

 So I thought some more…actually, there were two separate trains of thought that ended up merging “at the station” this afternoon. Train #1: Why did I stop using my “camouflage” to hide the dark circles and add a bit of color to my zombie-like pallor? Train #2: (This is actually a three-day-old train.) Why is my family suddenly treating me like a “sick” person?

 About 30 seconds after the trains merged, I had a Voila! Moment. My family has been treating me like a sick person because I’ve been acting like one! (And looking a little like one too.) Normal people occasionally get dressed, even if they don’t intend to attend a cocktail party, or even leave the house. Jeans, a t-shirt, or even a house dress are “normal” attire for most of the people of North America UNLESS they’re going to bed or are sick. (Hhhhhmmmm…..)

 As for the make-up…that’s more of a personal decision. Although, I have noticed that most people unless they’re on a sit-com or Desperate Housewives, can’t jump out of the shower, pull their hair into an impromptu ponytail, and manage to look fresh as a flower. Me…I’ve always been catfish-belly white with fine, limp hair even on my healthiest of days! It’s one of the reasons I’ve generally opted for a tiny bit of blush and mascara even on my days off. Until recently…

 The result of my “taking it easy” seems to be my family switching from treating me like a “normal” person who’s simply not running at full-throttle to treating me like an invalid. Not acceptable! Besides…it’s making my hubby worry needlessly.

 A few days ago I had the goal of getting out of the jammies for the day and seeing if it made a difference with my mind-set. I’m not sure if it did or not, but I was a little unnerved when my youngest asked me where I was going. I told him I wasn’t going anywhere and asked why he thought I was. His answer, “You’re not wearing pajamas, so I figured you were going someplace.” Oops! Since then, I’ve been doing my best to spend more time in “regular” clothing…*sigh* (It’s so constricting…)

 The epiphany I had this morning was that even though I don’t like people treating me like I’m “sick” or like something’s “wrong” with me, I’ve been acting the part. I’ve been acting and looking like someone who’s sick and run down.

 It reminds me of one of my hubby’s favorite sayings, “Perception is reality,” meaning if someone perceives something as being true, it becomes their truth. In this instance, if I look sick, I must be sick. (Although when I was in school, this NEVER worked on my Mother!) My reality is, I don’t want people to perceive me as “sick”, a.k.a. “broken”. If I need help, I’ll ask for it. If I can’t do something today, I’ll try again tomorrow, or ask for help. I am not fragile and I will not break.

 The only thing is…I wish jeans could fit more like jammie pants…

New Hat And A Few Laughs

My new hat complete with "I <3 Pain Meds" button.

 Last night I was a BAD girl…my daughter and I went shopping.

 It started as our annual pilgrimage to the calendar kiosk in the mall. Hey, if you wait til the middle of January, they’re half off and you can still find the one you wanted. (What can I say, I’m a tad bit cheap. *grin*) The trip ended with her tapping her foot and repeatedly sighing her impatience while I aimlessly roamed from store to store…(She called me a five year old with ADD!)

 Anyway…I found a great hat (it says, “One Tough Chick“), since all my ball caps (required wearing for “bad hair” days!) had become victims of either paint or puppy-chewing. To go with the hat, I found a pack of buttons that I’m sure are intended for cancer patients, but two of the four were too perfect to pass up, They say “I <3 Pain Meds” and “One Tough Chick”. What’s not to like?

 After I got home and was putting everything away, I stopped to read the back of the button package and LOVED what it said!

             “Laughter can relieve stress, lower
             blood pressure, and even boost the
             immune system.

            Not bad for something with a
            zero-dollar co-pay!”

 How awesome is that?

 The whole trip was a wonderful distraction from cleaning my kitchen and being nervous about Monday…my appointment with the Neurosurgeon. Why be nervous? Oh…all the usual reasons. Will he actually listen? Will he tell me he can or cannot “fix” me? Will he follow the Ortho’s lead and tell me the vertebral compression isn’t causing my problems? Will he find something missed in my MRIs? Or worse still, will he order more tests?

 Also, when Dr. X called (OK, his Nurse called) to give me the Neuro appointment info, she also gave me the blood work results. Everything normal except white blood cell count is low. They’re going to check it again in a month and if it’s still low, then the testing begins again to find the reason. Possible culprits…my meds, my liver, and throwing possible Lupus back into the mix. (Since I have Raynaud’s Disease, Lupus ALWAYS comes up in the list of “maybe-maybe nots”!)

 The GOOD news this week is since Dr. X changed my meds back and upped my dose, I have had phenomenally less pain which, in turn, has led to more energy. The hand tremors and headaches are still in high gear, but at least now I have the energy to deal with them and still get my hinny off the couch!

 I’ve also decided that I’m going to turn my wrists into a cornucopia of “Awareness” slogans. Every time I am given a “possibly this” diagnosis, I am putting on an “Awareness” bracelet for said disease. I have come to an understanding of how hard life can be for people living with these illnesses and the money goes directly to research for a cure. (I’ve made sure that the web-sites I order from do put the money where it needs to be!)

 So…that’s all the “news” that is “news” for today from my small corner of the universe. I guess the only lessons I could incorporate into my stream of “babble” would be to keep a sense of humor and a smile, every once in a while put yourself in other’s shoes, and it’s OK to occasionally do something to pamper or spoil yourself…even if it annoys your daughter! (insert loud laughter here)

Extreme Makeover, "Me" Edition

  Do you ever think about whether having a chronic illness has made you a better person? (OK…follow me here for a minute before you decide I’m full of crap…)

 All my life I have been an impulsive “free spirit,” living completely in the moment. I wouldn’t say I was ever really “present in the moment” but I was definitely NOT thinking about any of the moments ahead of me. As long as I could keep my body on the move, my brain didn’t really have to kick in much beyond the point of what I was currently up to.

 When I got “sick” my body was forced to slow down. That inevitably left my brain with some added free time to ponder…life, the universe, and all that happy stuff…including what kind of person I was and what kind of person I wanted to be.

 The person I was…class clown, cut-up, always trying to make people laugh. I never really took the time to necessarily consider what it was that was coming out of my mouth, as long as it brought a few laughs. And I shamefully admit, those laughs were frequently at other’s expense.

 My temper was also just as quick and sharp as my “wit”. I’d “spout off” like Old Faithful, never thinking about what emerged as long as it released the pressure. Then I’d go on as if nothing had happened. That’s a relatively easy thing to do when you’re “in the moment” and that particular “moment” has passed.

 After I slowed down, I started asking myself if this was a person I would want to spend time with? If this was a person I would see as a good friend or a good person? Do I really need to give you my answer?

 A lot of the time spent on the couch, doing my best human slug impression, was spent in some heavy soul-searching. And I eventually decided it’s never too late to attempt to be the person you WANT to be…it IS possible for “old dogs” to learn new tricks.

 I’ve heard more than a few people who at one time or another ended up on the wrong end of my sharp tongue say that it served me right…I deserved to get sick. Do I believe this physical crap is a punishment for my crimes against my fellow man? No. I do not and will not ever believe people become ill because they are bad people. This is not a punishment…

 Nor will I ever consider this a gift. It is what it is, but I can make it what I want it to be. And I have chosen to view it as an opportunity.

 I have been given a chance through a forced slow-down to discover who I “am” and change the things I find unacceptable. (On my best day I could have given Dennis Leary and Don Rickles a run for their money!) It’s not that I think I was a “bad” person…I’ve always considered myself a caring and compassionate individual with a soft spot for the “underdog”. I simply had some REALLY obnoxious habits that needed to go.

 And yes, I’ve “looked-up” quite a few individuals that I feel I’ve wronged in one way or another and apologized. I didn’t do it for the sake of forgiveness, I didn’t do it looking for a “get-out-of-sick-free” card. I did it for myself. Kinda my own version of a “twelve step” program.

 Step 1) My name is Chris and I have been a world class jack-ass.

 Step 2) I need to accept and forgive myself for this behavior.

 Step 3) I need, for my own peace-of-soul, to find the people I have wronged the most and sincerely apologize.

 Step 4) I will do my best to change this obnoxious behavior and become a better person.

 Step 5) …(OK, I’ve only got up to Step 4, but it’s a start!)

 Every day is a new step, hop, or limp on our own personal adventure. Sometimes the scenery is absolutely gorgeous, sometimes we gaze in a still pool and may not like the reflexion looking back at us. Instead of turning away or throwing rocks in the water, I’ve opted to change the face I see…from the inside out.

No-Jammie Day

 Another morning, another chance to make a small change in my little corner of the Universe!

 As long as I can remember I have always advocated taking charge of your life. If you really think about it, that encompasses so much more than simply “arguing” with Docs and researching everything before “blindly” following instructions. It also means you’re taking responsibility for you decisions and their outcome…good or otherwise.

 Taking responsibility for my actions…(that’s a pretty heavy topic to cover so early in the morning with so little coffee in my system!) It’s something I darn near preach at the “kids” on a regular basis. It’s something I tried to impress upon those I worked with. It’s something I frequently have to remind myself of on a day-to-day basis.

 For every decision I make, there are consequences. If I refuse to take one med because of the side-effects, there will be other aches and pains to deal with. If I opt to try an herbal supplement, it’s my responsibility to do the research for any possible interactions with my prescription meds. If I opt to assert my rights and stand up for myself, that label of “non-compliant” is going to follow me around for the life of my medical paper-trail.

 There are always pro’s and con’s. And it is always our responsibility to weigh them for ourselves before we make important…or even seemingly unimportant…decisions.

Has nothing to do with blog post, but I've always found trees
both philosophical and soothing...plus, I just like the pic!

 My Mother always put it in terms of the baby vulture form the Bugs Bunny cartoons, “If I do it, I get a whippin’….I do it anyway!” (She seemed to think that statement fit my personality to a T!) Or, as I got older and discovered the joys of being a teenager and “getting’ all philosophical” I would quote Mr. Frost and ponder “The Road Not Taken.” (Aaahhhh….teenagers and philosophy…a deadly combination!) But, however you phrase it, it all comes down to thinking about what you’re doing BEFORE you do it. (Personally, I’ve always been better at the “hind sight” method.)

 So, for today my goal is going to be a little bit different. I’m not going to list a corner of a room to get clean or an amount of laundry to finish. Today I want to be more aware of the decisions I make. How is the little pebble of “curl up on the couch with a blankie” I toss into the pool that is my life going to ripple outward? Will I do what I did yesterday and spend the ENTIRE day snuggled in my balnkie, missing the opportunity to fix my family a healthy lunch? Will I sleep half the day away, because I can? Or…will I pretend I’m one of those tiny water-gliders and ride the ripples all the way out, enjoying the scenery and making the most of what the day offers?

 Maybe if I simply declare today a “no-jammie day” and get dressed like a normal human, my mind-set will follow…It sounds like a good beginning!

 Oh, and when it comes to Robert Frost, I always considered myself more a “Birches” type of gal…

Bird-Brained Morning

 This morning I did something different…I did the morning bird work without my mp3 player! And…it was beautiful!

One of my Muscovy boys.




 The sounds of the wind combined with the early dawn bird-chorus turned my muddy yard into something almost magical!

 Today was one of those mornings when I actually slowed down and took the time to look around and appreciate my life and all the little things that make it a wonderful place to be…my place.


The "kids" playing in the woods.



                              

 I don’t know about others living with a chronic illness, but sometimes I allow myself to get so wrapped up in all the ways my body is refusing to play nice and forget what it is I’m supposed to be doing…LIVING! I over-think and worry about the little glitches and malfunctions and miss out on so much of the good stuff…

 So today, no updates on Docs or meds. Today, no rants about side effects or aches and pains. Today, I refuse to think of myself as “sick” but instead will remind myself I am a whole person. Today, I will laugh and play with my family.

 I spent most of my morning outside with a camera following my birds, enjoying the simple joys of their playing in the pool, the boys posturing for the girls, and the ways they interacted with each other.

 My favorite goose, Pearl, always close by with his LOUD honk. His mate, Mother (yep, Mother Goose) following at a distance, ready to voice her displeasure when I petted “her man”.



Pearl posing for the camera.



 My goal for today is simple…I want to carry this peaceful happiness…this joy in the moment…with me throughout the day. Whatever I do, I will do it as a whole person.



The Geese and Muscovys heading back to the pool.



 Because no matter what has caused the glitches and malfunctions, I am not broken. I am not damaged. I may have been changed and my even continue to be changed…perhaps a bit more limited than I was, but I am perfect as I am!