Great Granddad's Cane ~ or ~ Resurrecting Charlie

As a child, I played dress-up in my parents closet. Hey, it was the 70’s and my folks were the best dressed couple in southwest Kansas with my Dad in his 3-piece suits and sideburns and my Mom in her mini skirts and poofy hair.  One day, while falling over as I put on my Mom’s red patent leather platform boots, I came across an old, worn, splintered cane tucked back behind Dad‘s shoes.  (You’re trying to picture that spectacle now, aren’t you?)  Five year old inquisitiveness brought me face-to-picture with my Dad’s maternal grandfather, a prominent surgeon in Wichita in the 30’s and 40’s.  (There’s even a street named after him!)  In that picture, in my Great Granddad's left hand, was the cane that I had found in the closet, brand spankin new!!  I refer to this time in my life as The Kindergarten Inquisition.  I needed to know everything that there was to know about everything.  Most of my friends that age were still concerned with “why.”  Not me!!  I needed to know “who, how, when, and where.”  I think that this was where my love of stories, history and genealogy began.  (… yeah, I’m pretty sure that I’m quasi-positive that this was almost exactly when.)

As I began to put a few years under my belt, my quest for stories, knowledge and playing dress up morphed into becoming an avid movie-goer, a bookworm and a ham.  Where I once dressed up as a sophisticated fashionista of the 70’s, using Great Granddad’s cane the way that the women at Ascot Opening Day from My Fair Lady used their umbrellas, I quickly became Charlie Chaplin.  Waddling around duck-footed, twirling the cane in large circles from my hip.  (FYI … Mom’s mascara made for great moustaches.)  By the time my teens rolled around, my fascination with the cane was barely a memory and the cane itself had been returned to the depths of Dad’s side of the closet.

After returning from a trip to the Oregon coast in the summer of 2003 (I’d had RSD in my upper body for 11 years at this point), I found myself on my parents couch, unable to move at my hips.  My RSD was heading south, literally and figuratively.  I couldn’t even walk to the bathroom without having to hold on to someone strong for dear life, and I could forget about lowering myself onto the toilet seat and getting back up by myself.  This was when I received my 1st in a long line of epidurals, along with my regular nerve blocks.  Versaid, Lidocaine, Markaine, Morphine STAT!!  Back on my parents’ couch and in recovery mode, the world was still fuzzy and I was in and out of consciousness.  But during one of my moments of coherency, I remember Dad bringing me macaroni and hotdogs, a Pepsi, and Great Granddad’s cane.  25 more years had not been kind to it and I felt the same way about myself.  Immediately our bond was renewed.

It was still faded and splintery, even more so than when I was a kid.  The schellack was peeling, the splinters were bigger, the rubber stopper at bottom was worn all the way through, and it was my savior.  All either of us needed was a little help and TLC, so as PT for my hands, I lightly sanded and re-varnished the sturdy wood.  I can’t remember where or when I got the new stopper, but then again, I can’t remember a whole heckuva lot from that particular era of my life.  It’s been 9 years, and Great Granddad’s cane is in need of another facelift, but I can’t bring myself to do anything “crazy” with it.  I get my strength from my genes.  Great Granddad passed them to my Grandma S., she passed them to my Dad and he gave me the “X” that would prove to make me stronger than I ever thought imaginable.  I feel like I need to honor that by keeping things the way that are … for the cane, anyway.

I have faith that today, when I have my bad pain days, I will use my cane with pride.  I am absolutely not ashamed of where it came from and I am becoming less ashamed of why I need to use it.  Every sideways glance and questioning look is an opportunity for me to spread awareness for RSD.  I have faith that I will continue to use Great Granddad’s cane and the memory of the stories of his strength to persevere those valleys.  And just to cheer myself up on those bad days, I’ve even been known to resurrect Charlie Chaplin … with my own mascara!!

The Frankenstein Crawl

Every morning I wake up.  I like to think of it as a sign of good things to come ... until I realize that I have to move ... and then the daily dread begins.  Must.  Arise.  Must.  Face ... The pain. (ugh)  There are all sorts of ways for me to get out of bed: roll onto my side, slowly inching my legs over the edge until gravity can make my feet thump the floor; do the Inchworm Slide, on my back, to the foot of the bed until, again, said gravity takes hold; defy gravity and trebuchet myself to my feet; grab hold of Kiva's collar and growl "mush!!"; wait for my Team to wake up so he can crane-lift me out of bed and set me, lightly, on the floor; or I could just stay in bed.

The latter of these is unacceptable to me, period.  I know that the pain will only get worse the longer I don't move.  Weird, no??  That's RSD for ya!!  The longer we remain still, the more it hurts when we finally have to move, even to roll over in bed.  My Team is rarely awake before I am, so I find it easiest to treat getting out of bed like ripping off a band-aid.  Just get it over quick and let me re-adjust.  Trebuchet, it is.  Admittedly, I've landed on Kiva a few times when doing this.  Seeing as it's my way of getting up, she's the one that's had to learn how to move like a ninja ... and that dog has some mad ninja skills after 4 years with me!!

Once I'm vertical-ish, the real chore begins ... making my body parts move independently of each other.  Dude, this SUX and there is absolutely no way to avoid it ... I needs my coffee, dammit!!  I could put Bertha or Daphne right next to the bed, but then where would I get motivation to move?  (Bertha and Daphne are the names of the coffeemakers at the Chalet and Oasis respectively.  Bertha needed a good strong name that would live up to the punishing I can dish out, and Daphne is more pretty than productive, but she tries and tries and tries.)  With my body bent at a 135 degree angle, I begin the Frankenstein Crawl to the kitchen.  The sophisticated aroma of hot caffeine (Folgers) lures me through the house by my nose.  Millimeter by millimeter my feet follow where my nose leads.  62 heavy sighs later, the steaming elixir of the gods crests my lips and all of a sudden I have gumption to stand up straight ... er.  Only after three cups does 180 degrees become an option.

Thanks to my new 2% Ketamine nasal spray, I have been able to sleep more.  Yay me!!  The double edged sword lies in being motionless for a longer period of time.  Boo!!  So now that i'm upright and have realized that this is a blessing and a curse, I must figure out how to find a happy medium.  Less sleep = Less Frankenstein Crawl.  More sleep = More Frankenstein Crawl ... hmmmm ... I'll bet you Normies don't have to think about things like this either, huh??

I have faith that I will find my happy medium eventually,  I know it won't happen overnight, so I know that I need to be prepared to do the work.  Faith without works is dead ... and dammit, as long as I'm livin', I have faith!!    

Good Vibrations ... NOT!!

21 Years ago I was a volleyball and basketball playing, motorcycle riding, storm chasing, thrill seeker.  Fast was fun, slow was dumb, and sleep was for the dead.  I vaguely remember what that lifestyle was like.  I do remember the butterflies before each game, assessing the other team and which player I was going to brutalize, the thrill of the wind in my hair and against my face, driving all over hell’s half acre in search of the possible clouds that would drop a twister, and feeling the need, the need for speed.

Those days are gone … long gone.  RSD has seen to that.  My fear of increased pain levels and flares have me sidelined from almost every one of my “old” physical activities.  And the wind sends me running for the heated covers in my hermetically sealed bubble.  I am still recovering from an emotionally stressful week.  I should, by all rights, be back on track with managing my pain, but the Skank has been ruthless here in the Centennial State and this week has all of the earmarks of not getting any better.

I have been trying to think of an accurate way to describe what wind feels like to an RSDer.  I normally akin it to tuning forks and the bells of Notre Dame, but I’m not sure that that accurately details the torture that we endure.  So I’m gonna take a new avenue of description … Take into consideration that I am 5’11” and weigh 126 lbs; tall, thin, no meat, no padding, no insulation …

Imagine a Plasma Globe, you know, those gaseous globes that channel electric current??  Yeah, those!!  My bones are like the glass ball.  Anyway, imagine that along with the current, there is also pressure building inside the globe, pressing out against it’s confines, trying to burst it’s way through the thin membrane of glass (kinda like when you‘re blowing up a balloon).   This is how it feels when the weather changes.  It doesn’t matter if it’s getting cooler or warmer because every degree of change adds more pressure to the inside of the globe.  Now let’s factor in the wind.  If you trace your finger around the outside of the glass, an electric current, lit by neon gas, follows your connection.  Now wrap both hands around the globe and observe how much gas lights up from the electricity.  Imagine the electric vibration that is reverberating throughout the orb as the pressure continues to build.  One 20 mph gust of wind comes along and <SMASH> the globe shatters!!  The electricity starts zapping the muscles, tendons, veins, nerves, skin, everything!!  Some would say, “but at least the pressure is gone, right?” … Wrong!!  Because as soon as the glass breaks, it’s reassembled, but not every crack is sealed.  The pressure begins building again, electric shocks find their way through the cracks, and the next 20+ mph gust decimates the glass all over again.  And then it’s reassembled again.  And then the pressure builds again.   Every reassembly allows for more fractures in the glass which means more electric shocks to hit whatever is in it’s path.  For the last 5 days, the winds have been between 20 and 80 mph.  The local temps are topping out in the mid-60’s and the nightly lows are averaging in the low teens.  You do the math!!  (Notice I have not mentioned how the actual wind feels on my actual skin yet.  Trust me when I say that you Normies can only handle so much eye-popping realization so decorum prohibits me from telling you at this time.)

Usually, after about 12 hours of the wind subsiding, my bones begin to feel whole again.  The thing is, the wind hasn’t stopped for that long yet.  We had a few calm hours yesterday and that helped a bit, but I still feel tasered this morning … and there is more snow and more wind heading our way within the next 12 hours.  <ding ding> Round 4,754 for the month of February, comin right up!!  Has anyone found a cure yet??    

 So it’s time, yet again, to turn my focus towards what I can do now instead of remembering and dwelling on what I can't do anymore.  I’m not entirely sure what that is today, but I have faith that I’ll figure it out.  Lots of slow, careful movements today for this kid.  Finding ways to occupy my brain without rattling my body (not as easy as it sounds).  I also have faith that the wind will take a hiatus at some point and allow me to put all of my pieces back together … probably mid-April-ish … ugh!!  Hang tough everyone!!  Cuz I guaran-damn-tee you that I’m gonna!!!
     

Playing Catch-Up, Staying Focused, Drinking Coffee

Today I am off to play Catch-Up.  I am trying to keep a positive outlook here because my leg is still pretty sore but I think my foot could probably handle a shoe today; and I have things to do!!  Like … go see my Dad, go see my Munchkins, go to the bank, do laundry, etc.  My Team and I were supposed to go out dancing with friends tonight, but ... um no!!  Haha ...  Some battles are just not pickable today.   I love my friends, but when alcohol and rock music are involved, I become more of a liability than an asset … but ... have fun tonight gang!!  :D

I hate winter.  Period.  End of story.  Making plans is almost impossible; predicting the temp swings is a best-guess scenario; snow and ice scare me; as far as I’m concerned, the wind might as well be named Jack The Ripper; recovery time always varies, and life still goes on even when I cannot.  It SUX!!  With me or without me, life … goes … on … and I am in a constant state of Catch-Up because of it.  The good news is that summer is coming ... eventually, and my new 2% Ketamine nasal spray is helping with my sleep issues so I actually feel a little bit rested today.

However, I also feel a little more scattered brained than usual.  Not foggy, not funky, not fuzzy, not cobwebby … just not “all there.”  So I started making my lists.  I have 1 list for getting ready (shower, make-up, hair, clothes, teeth), 1 for what I need to have with me when I leave the Oasis (meds, cane, coat, keys, sunglasses, Go-Bag, dog), 1 for what I need to get done back in town (bank, Munchkins, dog, laundry), and 1 for the grocery store (I already told you about that adventure … “Jenn’s Bag of Tricks - Grocery Shopping”).  I will say that the coffee is helping me stay focused … or so I keep telling myself!!  ;)  I also have to say that the lists help keep me focused too.  I spend less time saying "ummm ... now what" and more time doing the next thing on my list.  I even have an order to getting ready that allows me to rest in between activities.  Shower, have a cup of coffee and sit.  Get dressed, sit, check emails and have another cup of coffee.  Dry hair, have another cup of coffee.  Straighten hair, let the dog out, refill my coffee cup, sit, take meds.  Put on make-up, stretch, make another pot of coffee.  Brush my teeth.  As long as I keep moving, slowly and deliberately, and with proper rest stops, I can keep catching up!!  But I must warn you ... don't rush me in the mornings!!!  There is a madness to my methods and I try to make them work for me!!  Throw a monkey wrench into my routine and only God can save you from my frustration and pain ... just sayin!!

I have faith that life goes on, with me or without me, in good ways and bad, it will always go on!!  I have faith that, although I will never be totally caught up (acceptance), I will always try!!  I hate feeling left out of anything but I hafta hafta hafta do what’s right for my body.  RSD, you still suck and I still hate you and I will always hate you, but I accept you and respect the certain amount of control that you have over my body.  But I also have faith that you will never ever ever take my heart and soul ... and mind!! I will keep fighting you.  We will forever be arch enemies.  We will each win battles, but you will not win this war!!  Why??  Because I have faith ... and coffee!!

Should-ing On Myself

The Skank is at it again and this time she has help!!  Snow, wind, 45 degree temperature drop, waning stress, worry, bronchitis induced asthma (aka - “normal winter Jenn-cold”), and a full right leg/foot flare have me sidelined today.  (dammit)  My bones feel like the bells of Notre Dame again, my throat, neck, and shoulders hurt from coughing, I can’t even think about putting my flaming heel on the floor, and I won’t let myself go back to bed!!  Am I a glutton for punishment??  Probably … but my mind is in full on go-mode and I am “should-ing” all over myself!!  This is not what I would call ‘bedrest-mentality.’  I “should” be babysitting the Munchkins today, I “should” be trying to get in the shower, I “should” get a couple more chapters written (or at least outlined), I “should” have better control of my pain, I “should” go visit my Dad and see how he’s doing for myself, I “should” be working on the CSD2 slide show … and the “should-ing” goes on and on.

If I let it, should-ing on myself could push me over the edge and into the deep end.  But I’m better than that.  The last few days have reminded me that I have to keep my body at the top of my list.  I know that I did the right thing by being pro-active with this no-such-thing-as-just-a-cold, because I could feel so much worse than I do.  I know that “freak accidents” happen and I can’t control the outcome, I can only listen to my body and make the correct alterations in my meds and techniques to combat it.  I know that my Dad is on the mend and doing well, and that is a huge comfort to me.  I know that I have my Kiva back and she’s being a total cuddle-buddy today.  She knows when Mommie’s not doing too great, so I’ve got that going for me, which is nice.  I know that the Dok-Tor is on Munchkin duty and they will be fine, but I want to kiss their faces and get hugs for Aun Jenn!!  (we’re still working on the “t” sound at the end of “aunt”)

So, what does all of this mean??  I don’t friggin know!!  But I won’t let RSD win!!  I can’t!!  I can sit here with my dog resting her head on my lap as I outline a chapter or two, I can keep my foot off of the floor as I watch How the States Got Their Shapes on History2 to get my wasted gray matter refill for the day.  I can work on the slideshow from my sofa surfing position.  I can stop should-ing on myself, if I let myself … hmmm … giving myself permission will be the hardest thing I have to do today!!

(Mom, close your eyes for a sec, please)  RSD = Really Shitty Disease  (ok Mom, you can look again)  I refuse to give in to it!!  It does not own me!!  I fight like a girl, I have a bag of tricks from which I can work, I have my laptop, I have my girl, I have my meds, I have my coffee and my Almond Joy creamer, I have Pepsi for when I need cold caffeine, and I have Dominos on speed dial.  No more should-ing today.  It’s a nasty habit and it stinks!!

I have faith that I will get better.  I have faith that my bag of tricks will not fail me.  I have faith that my family will be fine without me today.  I have faith that there is no better band-aid for my ailments than my Team … he holds me together until I can do it on my own.  My bills are paid and I am safe.  Everything else can be dealt with, one thing at a time … BATTER UP!!!

I'm Not Perfect, Trust Me

I think that I have gotten too good at hiding my pain, worry, stress, and physical insecurities.  This is not a good thing.  This is me, publicly admitting a fault, and I'm not entirely sure how to fix it.  However, I am not admitting defeat.  Honestly, I'm flummoxed, but this is something that I really need to decipher for myself and then I need to figure out how to accurately convey my findings.

I thought that by starting this blog, becoming an advocate, displaying my use of the Spoon Theory, and living the right life for me, that I could provide my family with some insight into my world of picking my battles, what my pain is like, and how much effort goes into each and every decision that I have to make.  I also hoped that thinking in terms of "spoons" would help my family cope with the restrictions that will follow my Dad's surgery.  I had emailed the Spoon Theory link to everyone in my family a couple of weeks ago, with the hope that it would offer some comfort and insight for all of us.  At dinner the other night, only my Mom and my Team knew what I was I talking about when I mentioned "spoons."  Everyone else looked at me like I owed them money and was speaking in tongues.  What I should have done was go straight to my folks' silverware drawer to gather up every spoon I could find and have them physically hold the spoons and then feel the loss as I take one away for every little detail.  But it was a family Funday and I consciously made the decision that the timing was inappropriate.  Selfishly, that particular decision bit me in the oostakaka yesterday in the waiting room of one of the fanciest surgical facilities I have ever seen.

I had saved up every "spoon" I could muster, was completely ready for any personal emergency regarding my RSD issues, and had my game face on for my family.  About 2 hours into Dad's surgery, I felt a spasm in my lower back on the right side.  I was prepared!!  I got into my Go-Bag and got a HeatWrap and Instant Heat Pad out and asked my sister if she'd give me a hand with it in the restroom.  30 minutes later I lost a unforeseen battle with a pleather chaise chair/lounger thingy.  It was a total "freak accident" as my Mom called it.  I was sitting in the boxy chair that had a tab in front that allowed me to pull out a foot rest and the chair turned into a chaise lounge.  I had stood up for some reason, I can't remember why, and (thank you RSD) I got kinda wobbly so I sat down ... on the foot rest ... and it collapsed under my immense weight.  (can't you just hear the sarcasm dripping from my voice?  HA!!)  This falter really jostled my lower back (already in spasm) and my right hip to the point of causing weakness and elevated pain to my upper right leg.  Talk about a setback!!  But Mom was the only one to acknowledge that something had happened.  It seemed to everyone else that I just "fell with tears."  When we were finally called in to the consult room to discuss Dad's surgery with the surgeon, to add insult to injury (literally), I felt shunned and excluded until I made my voice heard, and then I was told to "be nice" ... who me??  I totally did not mean to come across as snippy or mean and that was only understood by one person in the room.  I was in pain and I had questions of my own about Dad's recovery for which I wanted answers.  As soon as the consult was over and we were assured of Dad's progress and cooperativeness during the surgery, I pulled my Mom aside to apologize.  That was absolutely not the time for me to remove my mask.  I felt horrid for what I was I feeling, and whether or not I was indeed showing it, I needed to tell her how sorry I was.

I am a natural worrier.  I come by it honestly.  In these last 3 years of my coherency, I have better handled my worry and found ways to redirect it as much as possible through pacing, writing, practicing bio-feedback, listening to my Pain Day playlist, and watching my "feel good movies."  None of which I did yesterday.  Totally my bad!!  During my niece's surgeries, my parent's travels, my brother's trauma, and my own health issues, both RSD and upper respiratory, my concern has lied in my family and how they are coping.  So I downplay my own issues to give them my support.  Throughout Da Gurl's surgeries, I was worried about my sister who was worried about her daughter.  I was worried about my Mom and Dad who were worried about their daughter and granddaughter.  My parents numerous travels to and from Kansas have become "normal" but that doesn't mean that I'm "ok" with it all of the time.  I worry about my brother's head, post concussion.  I worry about my parents who worry about my brother.  Why I didn't combat my worry/stress/pain in a better fashion yesterday completely escapes me.  I am not perfect but dammit I am better than that and I know it!!

I have faith that I will find the answers to the mysteries of my insecurities.  This is, most definitely, a learning experience and hopefully I will be more prepared for future worries, God forbid!!  I have faith that this particular post will piss a few people off, but this is my diary about how I deal with my life and my RSD.  I am merely showing my disappointment in myself for not conveying my own feelings and opinions in a more constructive manner. I have faith in myself to make the right decisions for me and I hope that the people that mean the most to me will do their own due diligence regarding the Spoon Theory.  If I can't get my blood relations to understand, maybe I need to rethink my own objectives.  So much thinking, so little time!!  (yowza!!)

Killing Ducks

Stress-wise, this week could, quite possibly, suck, so I've taken some steps to help relieve some of the stress before it has a chance to bite me in the butt.  Some stress will be inevitable but I will handle it to the best of my ability … and with the help and support of my Team and my family.  Tomorrow my dad undergoes surgery.  My sister and her family drove in on Saturday and last night we had our Sunday-Funday Family Night that we usually only get to do during their summer vacation.  Eight adult bodies and 2 Munchkins gathered around the folks’ dinning room table for grilled chicken, pasta with pesto, green beans … and ... “Birday Partay,” as my nephew calls it, and “Kek,”(cake) as my niece calls it!!  (From Jan. 23-Feb. 23 our fam celebrates 5 birthdays, and for the 1st time in a long time, we were able to celebrate them all together.)  It was a great, and much needed, night of “decompression” for all of us!!

Looming high above, however, is …ugh … stress!!  I’ve said it before and I’ll say it again … Stress sucks but it sucks even more when you’ve got a chronic pain disease like RSD.  But … I have already been pro-active on getting my own ducks in a row so that I can kill 'em and focus on my family this week.  Kiva will be spending a few days with Unca D and Auntie C so that I don’t have to worry about whether or not she’s eating, getting outside at the appropriate moments, and staying out of the trash (you haven‘t experienced 'gross' until you come home after a long day to coffee grounds, cig butts and ashes, Kleenexes, q-tips, and “other things” strewn through house.)  I know she will be well loved and attended to and I cannot begin to tell you all what a relief that already is to me.  (the one problem is that Miss Kiva had better not be expecting those 2 mile walks that she gets with them when she gets back to me … it’s friggin winter!!  Helloooooo!!!)  I will miss her for a couple days, but my spoons need to be spent on humans this week and my Team is going to have his hands full holding together a sick, stressed, flaring girlfriend and working his day job. (don't worry, I've already warned him!! ;) )

I re-enabled my antibiotic regimen, knowing full well that I get sickER at hospitals.  Hey, it's what happens when you have no immune system and you're surrounded by sick people!!  I’ve been fighting this “no-such-thing-as-just-a-cold” for a couple of weeks and, knowing my luck, this would be the week for it to cut me off at my knees.  I have an appointment with my regular doctor today so that I can get on whatever other meds I need to be on to ward this off, prevent other ‘illnesses,’ and treat what’s already settled in my chest <hack hack cough cough wheeze>.  I have also placed a call in to my anesthesiologist for a refill on my Ketamine nasal spray.  It’s better to have it and not need it than to not have it and desperately need it!!  (Especially since there is only 1 pharmacy in a 25 mile radius that can mix my low dosage.)  I wanted to have my house cleaned before tomorrow but that is not a spoon I’m willing to take away from my family.  I will get it picked up a bit, but I choose to not manhandle the vacuum as well as not doing the repetitive motions of dusting furniture and wiping down the bathroom.  My iPhone, now that it’s dry (it went for a swim in the toilet over the weekend), is fully loaded with the music, apps, and videos that can help distract and entertain the Munchkins and myself.  I’ll stay at the Oasis since it’s closer to where the surgery will be, less travel time = less stress and discomfort.  My Go-Bag is refilled and packed and will stay in the car all week unless it is needed.  I even made sure that I had extra Benadryl in there for stress-induced hives … those date back to my pre-RSD years, but hives have become uber-brutal, pain-wise, in the post years!!

These are the types of things that I have become aware of over the years, in dealing with RSD, family, stress, ... and waiting.  I’m sure I’ll find something to kick myself over tomorrow when I end up missing it, but my dog and my pain (the 2 most important things) are already taken care of.

I have faith that this week go as smoothly as possible and that my family will do what we do best, form an unbreakable barrier of love and support.  I also have faith that my doctors will do whatever they can for me today, and that I will keep all of my pain manageable.  If I’m not able to blog tomorrow, please know that I will thinking of my RSD family as well and wishing you all minimal pain and maximal smiles!!

Jenn's Bag of Tricks - Grocery Shopping

Living alone with RSD is not easy.  In fact, it’s a depressing pain in the tookis!!  But it is possible!!  Once you have amassed a bag of tricks, there is almost nothing you can’t do in your own life!!  You just have to be willing to make the necessary changes, pick your battles (spoons), swallow a little bit of pride from time to time, and just *keep at it*.  Soon things will become like 2nd nature and you’ll be making your own life a little easier without even realizing it when you do it.  It just becomes "the way that things need to be in your world."  Here are a few of my grocery tricks to help get you started …

The mere thought of traversing the aisles of a grocery store, while in pain, can be paralyzing to me.  Add to it the inevitability that I will have to face the refrigerated sections, and I have a strong case of Supermarketphobia.  So I don’t go alone.  I call a family member or a good friend and ask someone if they would be willing to help me spend a couple spoons on an adventure on a specific date at a specific time, I’ll buy the coffee.  (RSDers, please be mindful of how you ask.  Remember, these people have lives of their own and the sun does not shine out of your tookis for the rest of the world to revolve around.  Set it up in advance.  The worst anyone can say to you is “no” and that’s ok, you can call someone else or wait a day.  You have bigger battles to fight.)  Since my SSD checks are WAY below pathetic, I have become a coupon clipper.   I make a detailed grocery list based on the valid coupons in my collection.  By detailed, I mean that I write down (or type out) the brand that I want as well as the specific flavors.  I also buy in bulk, when possible, and divvy up portions for future use and easier handling.  When I go to the store, regardless of time of year, I wear layers on my upper half as well as long pants and I wrap a jacket around my waist.  I always use a cart for balance (well that and those small baskets get too heavy after 2 items) and if it’s a “big trip” I’ll take my cane in too, even if it's for nothing more than reassurance that I have it if I need it.

Yogurt - I have a coupon for Yoplait.  I google “Yoplait yogurt flavors” and I write down 5 flavors that look good and that I know I’ll eat.  If it’s a good pain day, I’ll put my jacket on before heading down the yogurt aisle, if it’s a bad pain day, I’ll give my list to whomever is with me and then they know the exact brand and flavors to look for without having to shout out my options to me.  Also by making a detailed list, in case it’s a really bad pain day and someone has to do my shopping for me (I reserve that particular job for my mom or dad), they have my particulars in front of their faces and I’m not subjected to what they think will sound good to me.

Milk - I buy vitamin A&D milk because I need every vitamin and protein I can ingest.  Those gallon jugs weigh a ton (well …  a gallon might as well equal a ton if you’re an RSDer) so I ask whomever is with me to “please lug the jug” for me.  When we get back to the Chalet, I ask that same person to pour the milk into my designated, more manageable to me, sealable containers (with handles).  That way I get my milk, vitamins, and moustache without being afraid of manhandling the big plastic jug that weighs more than I do … at least until the darn thing is less than half empty.

Ground Beef - I buy a minimum of 2 lbs at a time, depending on price.  When I get home, I put the whole thing in the freezer and wait for a good pain day to grace me with it’s presence.  On that good pain day, I thaw/defrost the package/log, put a white onion through the food processor, and brown it all.  After it cools, I take sandwich size freezer bags and put a couple cups of meat in each baggie and stick them back in the freezer.  I can reheat 1 baggie at a time for tacos, spaghetti, goulash, pizza, or whatever I’m hungry for that particular night.

It’s the simple little things that I can do to make my life a little easier and more manageable and they still allow me to feel a sense of independence and accomplishment.

I have faith that, even though I am no longer “alone,” I will still be able to use my creative bag of tricks in enough little ways to make the scariest tasks feel like a successful adventure.  I have faith that the single and alone RSDers that read this will take 1 or 2 of my tricks to heart and say, “Oh yeah, huh??  I can do that too!!”  When we stop believing in ourselves, RSD wins … And I’ll be a monkey’s uncle before I let that happen to me!!

Dissension In The Ranks

I belong to over 15 adult, RSD related groups on Facebook and never have I ever seen so much catty behavior in all my life!!  Seriously people??  C’mon now!!  We’re supposed to be “helping” each other, providing “support” for each other, “listening” to each other, and for God sakes, not cutting each other down!!  We need to bond “together” to promote awareness, possible treatments, and positive attitudes.  To the, yes I’ll say it, WOMEN who have turned on each other, belittled each other, verbally abused each other, attacked each other, and spread lies and rumors about each other, I have this to say to you … HIGH SCHOOL IS OVER!!  WE are fighting for our lives here!!  How dare you climb to the top of your high horse and be the cause for additional stress and pain to another sufferer!!  Yes, I am pissed!!  This falls under my heading of “Bullying” and I have zero tolerance for it!!

Facebook has become a Godsend for us RSDers.  We have found that we are not alone in our fight against the pain.  I have over 150 “friends” that I have never met, but we have a formed a bond through RSD, and quite a few of us have become very good “friends.”  And the one thing I have learned, more than anything else, from these people is that even a cripple with an open mind and a big heart can move mountains.   For instance, I have never been face to face with the Warrior Mama or the Penguin, who live in Florida, but, thanks to FB, they started Crazy Sock Day, sucked me in to the event, and then they let me run with it this last year.  We have raised awareness together and brought comfort and hope to each other.  And then there’s Raspberry Shortcake, who lives in PA.  Never have we seen the whites of each other’s eyes, but because we feel like the pioneers of the new onslaught of sufferers (we‘ve both had it since ‘91), and have tried similar treatments, and found solace in the same things, we have become confidants and true friends to each other.  I reconnected with my Godfamily through Facebook and RSD (dammit), I met others in my area with RSD and have been able to meet them face to face.  I need these groups!!  To keep me focused on the fight, to be my sounding board, to get me out of my own head and help someone else who is struggling, I need them!!

Most of us are confined, in one way or another, to our homes.  Because it hurts too much for us venture out in public when it’s cold, or windy, or snowy, or rainy.  Because we can’t always wear enough clothes to cover our private parts since our sensitivity to touch, of any kind, is amplified to an excruciating level.  Or because we’re afraid of slipping on the ice,  Or because we’re too hopped up on our meds to drive.  Or because … ah hell, all of the possible reasons are too numerous to name.  Our social lives are right here, on the computer.  Yes, some of us have been able to re-forge a trail towards independence, but not all of us.  I can still get out from time to time … and it’s been more and more, lately, since I have constant support from My Team and my family.  It’s been fantastic!!  I get to see real faces instead of profile pictures!!  I get to hear voices (not just the imaginary kind) without having to hold my phone up to my ear for hours on end.  I am getting more comfortable allowing certain others to see me in pain so that they have a better understanding of what “good pain days” and “bad pain days” look like.

But I need my network!!  The drama and BS that has transpired over this last week has caused people that I have come to care about to leave these groups.  And yet the instigators remain, perched upon their roosts, waiting to descend upon the next unsuspecting victim who is seeking help and advocacy.  I am here to tell you that even the vultures can be shot down if you have the right gun (ally, advocate, attitude) in your holster.  

I have faith that I can be that gun, if I am sought.  I have faith that the cattiness will subside for a while, and rationality will resume it’s roll as our overseer!!  And I also have faith that as soon as I take a lavender Epsom salt bath, drink a cup of chamomile tea in between pots of coffee, and do some bio-feedback breathing that this last round of “She Said, She Said” will be a distant memory.  Onward and upward people!!  We have awareness to raise!! 

Doing The Next Right Thing

I am a tall, skinny, tomboy girl-jock.  I have always been a tall, skinny, tomboy girl-jock.  I got my 1st non-surgical scar at 5 … and it’s still visible on my right knee.  In all of my elementary school class pictures, I was always in the back row, always the tallest girl, and a couple of times I was even the tallest classmate … period.  I started taking gymnastics classes in Kindergarten in SW Kansas.  I began my stint as a basketball player in 3rd grade in Colorado Springs.  4th grade in Longmont brought me to the YMCA soccer program.  By the time I reached 5th grade, my gymnastics instructors at the Longmont Athletic Club informed me that, at 5’2”, I was too tall to compete in my age group.  In 6th grade basketball, I made my 1st half-court shot at the buzzer.  In the fall of 7th grade I found my soul on the volleyball court and by spring I was striding and gliding over hurdles with the “big girls” at track practice.  For the rest of my junior high and high school years, I was the starting Middle Hitter and occasionally Back Row Setter on the volleyball court and starting Center on the basketball court.  My bony hips, knees and elbows became my weapons of mass destruction.  I broke opponents’ ribs and noses, dislocated knees, caused sprained ankles, and was the distributor of countless, dark, painful bruises.  A few weeks before I was to leave for college, I was playing in a pick-up game of basketball at the athletic club (yep, same one that kicked me out of gymnastics) where I lost a rebound and scored a sprained knee (FYI - these are still my pre-RSD years).  My freshman year of college started without me in a uniform.  Desperation set in as my knee healed and I needed to be back on the court.  So I added tallest member of the Drill Team to my “Tallest Of” résumé.

In 7th grade, at the age of 13, I began my rebellious teen phase … I started smoking cigarettes back behind the Track Shed at LJHS.  I have now been smoking for 30 years.  Are you fucking kidding me??  (not gonna apologize for this one, because IF my mom cussed, that’s exactly what she’d say, and she knows it!)  I have quit booze, pills, cocaine, acid, and caffeine (for a brief period of time, post gall bladder surgery.  I resumed my coffee intake as quickly as my body allowed … 2 years later.)  I beat my RSD every single day just by getting out of bed.  But I have not been able to successfully quit the cancer sticks.  My best run was last year.  3 weeks the e-cig, and Nicorette gum.  When the stress moved back into my life, so did the tar and additives.  Having recently discovered that heart disease has reached out and smacked my fam upside the head, I am more determined than ever to break this damn habit.  This time I will not do it for my folks, my siblings, my Munchkins, or my l’il fam ... I will do it for myself.

When I was younger, having lost a brother when her was 9 months old, I began living by the mantra, “If only the good die young, I must be immortal.”  Every time I stare into the mirror now, I stand nose to nose with my mortality.  I finally love my life, RSD and all, and I want as many years on this planet as I can get.  Yes, I have days where I would rather be anyone but myself because of the pain, but I always come back to my tall, skinny, tomboy, girl-jock mentality.  That frame of mind that says, “take a deep breath, shake it off, get back out there and show those people what you can do.”

Yesterday, I ordered the replacement parts that I needed for my e-cig apparatus.  My next SSD check comes next week and I will be reinvesting in Nicorette gum (citrus flavor).  By the end of next week, I will be a non-smoker.  Last week I began a private Facebook group for RSDers Breaking the Habit.  Since stress affects us RSDers differently, I needed a support system that really understands and won’t just spew rhetoric.  We already have six members!!

I have faith that I will break the habit of nicotine.  I have faith that this is the next right thing for me.  I have faith that the people closest to me, and my cronies in RBH, will hold me accountable to myself.  I have a lot of life left to live, and dammit, I want to LIVE!!!

                                                          ♡..♡  _________________________ ♡..♡

OOHH!!  Quick update about Kiva, he said "Yes!!!!" 

He Said "YES"!!!

New Holiday … Kivalentine’s Day

“Happy Valentine’s Day, Kiva!” …
“Happy Valentine’s Day, Mommie!” …

Ms. Gump may have said, “Life is like a box of chocolates.  You never know what you’re gonna get,” but my Mommie always adds to it and says, “…unless you are smart enough to look at the map on the inside of the lid.”  My Mommie is a dork, but she’s a smart dork.  As for the box of chocolates, she won’t be getting any.  Mommie can’t eat chocolate anymore and wants to have a memorial service for her chocoholism.  For about a year she has been testing this horrific “allergy” and it doesn’t matter anymore, chocolate causes her to flare.  She gets these intense, cold, prickly feelings on her neck, the back of her right arm, the palm of her right hand, and down the back of her right leg.  Maybe if she would chew it on the left side of her mouth, there wouldn’t be a problem, right?  Wrong.  It just doesn’t matter anymore.  I have seen her eat it, but she won’t eat much at a time.  She says that the taste is worth the pain … occasionally … but I wouldn’t know about that.

Four years ago, Mommie told me that Valentine’s Day was just another day on the calendar, but she‘d always make sure that I was her Valentine.  Three years ago, she told me that the day was an evil plot against single people and that some little blind baby-guy named Cupid was Satan’s Spawn, but I was still her Valentine.  Two years ago I didn’t get to spend Valentine’s Day with my Mommie because the Munchkins were getting baptized in Kansas and my Mommie would become a Godmother for the 2nd time in her life.  (She’s also one of Unca Houdini’s Godmothers.  I guess that’s what happens when you’re 14 years older than your brother.)  But before she left, she promised me that I was still her Valentine.  Last year I got to spend part of the day with her, but then she had to go to Wally’s World for 5 hours for her Cat-o’-mine nerve blocks.  She started the day sofa surfing and in a ton of pain and turning funny shades of grey (I’m a color blind dog, remember?) and she ended the day sofa surfing and burping into the dark bags that they give her when she leaves Day Surgery.  Again, she called me her Valentine.  This year I have my Mommie all day, she's not snarky, she's not sofa surfing, and she's not burping.  So I am taking it upon myself to make this my best Valentine’s Day ever … Mommie’s Pain Be Damned, this will now be known as Kivalentine's Day!!

The original idea came to me about 10 days ago <stretch> but I had no idea how to put it into action until this morning.  Mommie had another <yawn> insomnia night last night.  You would think that after living with her for over 4 years, I would be used to them.  And I was.  I really was!  I used to be ok with her bad nights <stretch>  because I would curl up just about anywhere in the Chalet and still be able to <yawn> keep an eye on her.  Last night was the <double yawn> 2nd night in the last week when my perch did not have a broad enough scope.  I was tucked in and snuggled up next to Mommie on her sofa surf board and watching a movie but <stretch> every 30 minutes, or so, I had to get up and make sure our Team was still sleeping in Bodieland.  I have now <yawn> named this act “making the rounds.”  I think it was almost 4 a.m. before she was able to breathe deeply enough to force a couple hours of sleep.  We crawled back into Bodieland and I made Mommie the meat of the sandwich.  When we all got up, Mommie went to visit Bertha and our Team and I curled up together in the big, brown, comfy chair where he invented the Kiva Song … This was when my bright idea hit me between the ears like a ton of rawhide bones.  

Family is everything!  Mommie says it all of the time and I know that she and I are our own little family, but I have never had a “Daddy.”  Mommie has one and she loves him very, very much.  She gives him hugs and kisses, they watch tv together, they walk around together, they go places in the car together, they talk, he comforts her when she’s scared, they eat together and he laughs at her … a lot!  And I got to thinking, these are all of the things that our Team and I do too.  So as soon as he left the Chalet this morning, I kicked Mommie out of her chair so that I could write the blog today … and … I think I have the courage to ask him now …

Dear Our Team,
Will you be my Valentine … and my Daddy?
Love, Kiva

I have faith that he will read this and think that my Mommie is the Ultimate Dork.  I also have faith in my adorable face and it’s ability to nullify the word “No.”  I deserve a Daddy … and Mommie always says that I deserve only the best of everything … and he’s the best!!

“Happy Valentine’s Day, Everyone!”

Memories of Who I Once Was

I remember (vaguely) during my junior year in high school, I was healthy, bopping through the hallowed halls of Niwot High School, on my way to Miss Hudson’s 5th period choir class with some friends, all of us sporting leg warmers, acid wash jeans, big hair, and bangle jewelry, and all of us singing this brand new #1 hit, “How Will I Know” at the top of our lungs.  Move over Belinda, Joan, and Pat!!  Whitney Houston was our new idol, and there was no denying it.  

After the recent and tragic demise of this iconic, angelic voice, I find myself reflecting on, not only my happy high school memories, but my own past issues with “substance abuse” as well.  The first 14 years of my RSDism were spent in a drug induced fog.  And, I might add, it is not a kind of fog that I would ever recommend to anyone, RSDers included.  I know that we need our drugs and meds and whatever else it takes to get us through our days, but living the last 6+ years of my life without the “fog” has given me the power and confidence to face my days differently.  Being off of the pills does not make me a stronger person, it just makes me a little more creative in my attempts to hinder the pain.  What works for one of us, doesn’t necessarily mean that it will work for all of us.  But getting out of the box and trying, and failing, and trying and failing and trying again are what make me stronger.  Thomas Edison failed numerous times before he finally had the right combination of elements to make his light bulb work for the first time.  (the actual number of times has become something of a controversy of late, so I’m just going with “numerous times.”)

I can honestly say that I have tried way more than my fair share of pills, treatments, and street drugs over the years.  Pills such as: Vicodin, Vicoprofen, Percocet, Valium, Morphine, Methadone, Xanax, Neurontin, Paxil, Amatriptiline, Zoloft, Cymbalta, Celebrex, Naprosyn, Oxycontin, Indomethacin, Prednisone, Lidocaine, and … well … those are the only ones I can remember off of the top of my head right now.  As for treatments, I’ve tried nerve blocks, physical therapy, occupational therapy, religious counseling, bio-feedback, massage therapy, acupressure, acupuncture, TENS units, psychotherapy, hypnotism, and I know I’m forgetting a few more of those too.  For some reason I feel that I need to preface my use of street drugs.  Yes, sometimes they were just fun to do, but, what started out as a little fun, quickly became stupid reasoning, and that turned to addiction.  I wanted the pain to go away.  I wanted, no, I needed a vacation from the pain and from the existence that had become my pathetic life due to the pain.  I turned to cocaine and magic mushrooms.  That turned into crack and acid.  Alcohol was mainstream as well, but legal.  After a while (7 years, give or take), I was able to back away from my own ish long enough to get myself off of the coke and psychedelics.  The pills still weren’t doing an adequate job of killing my pain though, and I found myself taking more pills… and more pills… and even more pills.  Combine that with my booze intake and I didn’t get out of bed for almost 3 years.  It hurt too damn bad, the pills and alcohol weren’t working for anything other that sleep, and on the rare occasions that I would leave my bed, the prospect of walking into doors and walls and tripping over thin air were too hazardous for my foggy brain to navigate.  I would show up to family dinners and pass out in my mashed potatoes.  When I was conscious, I resembled Lindsay Lohan’s mug shots.  My words were slurred and in a foreign language that even God couldn‘t translate, and you know how I feel about using my words.

After being intervention-ed by my parents in early June 2005, I knew it was time for a change.  The tricky part was finding a drug and alcohol rehabilitation establishment that would honor my doctor’s recommendations and warnings for weaning me off a certain percentage of the meds.  HA!!  Anyone who knows anything about rehab facilities knows that this is not possible.  Once you go in, you’re done with everything!  Cold turkey, even with a 12 Step Program, is life threatening to an RSDer and those “counselors” don’t give a rat’s butt about anything other than full sobriety and recovery.  10 days after my not-so-fun family intervention, I walked myself through the doors of my local hospital’s Psych Ward … oops!!  I’m sorry, I meant “Life Management Unit.”  I needed to be closely watched and monitored by actual medical professionals as my meds were decreased to an “acceptable” dosage and the booze was drained from my system.  My anesthesiologist was always on call, the unit shrink was always on call, and my pain management doc was in and out … more out than in, but she was around-ish.  They began my detox process and I was finding that, dt’s aside, I was feeling better … and stronger.  After 1 week on the unit, I walked into the shrink’s office and declared that I was done with ALL pills.  The woman hung her head and mumbled, “You can’t.”  Ah ha!!  She had done her homework on RSD!  But I’m kinda stubborn, if you hadn’t guessed, and said, “What do we need to do to make this happen?”  That afternoon there was a convention of doctors and nurses, and family members.  Tears were shed, cuss words were screamed, and I think I even remember a tissue box getting hurled across the room a couple of times, but the patient won!  My pain doc said that there would come a day when I would have to take a pill or two for the pain, but that would be my call.

My sobriety date is June 24, 2005 and I have not touched a drop of alcohol since.  The pain doc was right though, it took just over 9 months before I called her and told her that “that time had come.”  And what do you think happened when I swallowed that large, white pill full of 750 Vicoden ES?  Let’s just go with projectile vomit and leave it at that.  Well, that didn’t help my pain level!  My anesthesiologist suggested  a very low dose of Oxycodone … 5mg low, and I had the same damn reaction!!  But it was the lowest form of anything that had the potential of working at the time.  That was when I found my holistic path.  (this is a subject for a later date.)

What does all of this have to do with Whitney?  She went to rehab three times and, for whatever reason, couldn’t break herself free from the grip of addiction.  I never ever ever want to re-live those first 90 days of my sobriety.  I went to AA meetings and had to take a big pillow with me so that I could sit on the floor.  I was so jittery that I would bounce right off of the chairs.  It has taken a long time for me to feel comfortable in my own RSD riddled skin.  I don't ever want to have to go through all of that torment of learning those lessons again.  I now know what incites my flares, I now know what works for me when I do flare.  I now know how to prepare myself for most weather changes, and I now know how to save myself money by doing my own physical and occupational therapies at home.  I have come to rely on the fact that, even though I hate the side effects with every ounce of my being, my low dose Ketamine nasal spray will not make me do the Technicolor yawn and create more pain. My holistic meds help make my days manageable and I am still booze-free!!

I have faith that I will continue, strong, in my sobriety.  I have faith that I will not succumb to the destiny of one of my idols.  I have faith that I am on the right path for me and my RSD, and I have faith that all of my fellow RSDers will find their paths away from the fog and into a life that they will be proud to own and live … just like me!!!

If You Don't Say It, Neither Will I

Having an Invisible Illness, such as RSD is painful, stressful, depressing, enraging, and frustrating … and yet we manage to wear masks of smiles on our faces even though these are the feelings that are always paramount in our lives.  When we are finally able to muster enough strength and energy to venture out into the real world, we become forced to add “suffering at hands of the unaware, unknowing, un-understanding, un-attention-paying public” to that list.  Go to my Facebook page and look at my pictures!!  Do I look sick?  No, not always, because the days that do look sick, I don’t leave my hermetically sealed bubble so that no one sees what I have to go through.  It is really hard to feel all of this pain AND endure the pathetically sympathetic, or questioning glances from the rest of the world.  Please make yourselves aware of the contributing factors/WORDS that do add to our pain.  We know that you mean well (for the most part) but there are certain phrases that are worse than the sound of nails on a chalkboard … and, by the way, that sound increases our pain levels too.

So here we go.  This is a partial list of common phrases and questions to which we, the RSDers and RSD Caretakers, are subjected every time we, the RSDers, cross our own thresholds and embark on a journey outside of our own protective walls.  I am also supplying the responses that we could, quite possibly, use on the spewer.  RSDers, feel free to use my responses for yourselves, if you‘d like.  Normies, be conscious of your words, please.  Be supportive of us and our caregivers, because they don’t like having to answer these statements and questions either.  Being thoughtful of your words can save a lot of people a lot of heartache as well as physical and emotional pain.  (RSDers, feel free to change the words to better fit your situation.)  


~ but you don’t look sick ~ “…and when we first met, I didn’t think that you looked like a jerk!”

~ everybody gets tired ~ “Yes they do, but most ’everybody’ can sleep when they are tired.  I can’t.  Now BACK OFF!!”

~ you’re just having a bad day ~ “…and you just made it worse.  Thanks!!”

~ it must be nice to not having to go to work ~ “Tell you what, I’ll go to work for you today and you can deal with the pain that I’m feeling in my body.  It’ll only be for 8 hours or so.  I’m sure you can handle it.”

~ I wish I had time to take a nap ~ “I could hit you over the head with a 2x4 to oblige you.”

~ what do you have to be depressed about? ~ “Idiotic, sophomoric, inconsiderate people like you who still have full use of your bodies!”

~ if you’d just get out more… ~ “It takes me 2 days to rest my body and prepare for an outing, and then it takes 2-3 days for me to recover from that outing.  So … in 2 days I’ll be showing up at your door to open a can of Whoop A$$ just for you.  And I will willingly subject myself to the recovery time afterward!”

~ you can’t park in that handicap spot ~ “See that handicap placard hanging from my rearview mirror?  It says that I can.  Now please back up so that I can get my cane out of my car and slowly make my way into the store.  Have a nice day.”

~ you’re just getting older ~ “And you’re just getting to be a prick.”

~ if you’d just get more exercise… ~ “I would love to be able to exercise!  Will you go with me, carry me into the gym, and help me get from machine to machine?  And then will you take me to the Emergency Room as soon as we’re done ... and stay with me for 3 hours and watch while I get 9 inch needles stuck into my neck, back and groin area?”

~ it can’t be that bad ~ “You're right!  It’s not!  It’s worse!”

~ it’s all in your head ~ “…and our friendship is all in your head!  Buh Bye!”

~ you’re just depressed ~ “Great!  So when I beat you senseless with my cane, I can use the “insanity” defense.  Thanks!”

~ there are people worse off than you ~ “I’m sure there are … somewhere.”

~ you’ll just have to tough it out ~ “I would pay money to see you have to tough this out for just 1 day.  If you survive that day without going stark raving mad, I’ll pay up and shut up.  Until then, I‘ll just keep hangin' tough, 24/7, so that you don‘t have to see what it‘s really like.”

~ you just need a more positive attitude ~ “What, my <bleep>ing Pollyanna attitude isn’t <bleep>ing good enough for the likes of your sorry @$$?” ... or ... "After a statement like that, my positive attitude tells me to walk away and pretend I didn't hear you say that."

~ this, too, shall pass ~ “Really??  Since there’s no cure yet, when???”

~ you don’t seem like you’re in pain ~ “And the Academy Award for Best Impersonation of a Healthy Person goes to … … … ME!!”

~ …but you’re always happy and smiling ~ “Just because the sun is shining, is it always warm outside?”

~ can’t they just cut the nerve out that’s causing the pain? ~ “That would be great, wouldn’t it?  But then I wouldn’t have a single nerve left for you to jump on!”

~ you’ll grow out of it ~ “I didn’t realize that you graduated from Johns Hopkins.  That’s valedictorian speech material right there!”

~ I read about this new pill that cures RSD, it’s just not available in the States ~  “There is NO cure for RSD anywhere!  In fact, there are over 5 million sufferers worldwide and only 2 million of them are in the States.  So why haven’t the other 3+ million been cured yet?”

I have faith that someday the Normies of the world will realize that not all pains and afflictions are visible.  I have faith that RSDers and RSD Caretakers will stand up against these insolent, hurtful phrases and regain a certain amount of self-confidence and independence.  We are fighting the pain and the clock to raise awareness so that we need not feel the depreciation value of hurtful words that are meant with "good" intentions.  Spread Awareness PLEASE!!  We need it desperately!!

Decisions, Decisions

Ugh … I think I hate making decisions for a while ... again.  Life is full of choices, but when you’re an RSDer, your options change because your needs have changed.  For instance, I’m tired and I hurt, so I need to lie down.  There is no choice there.  It’s a necessity right now.  When Normies need to lie down, it’s to sleep.  If I take a nap during the day, my already messed up night schedule gets even more messed up.  1 hour of day sleep, regardless of time of day, will cost me 2 or more hours of night sleep.  Considering that I only average 4 hours of non-consecutive sleep at night, napping is not a choice for me either.  The choice I get to make is what to do with my mind while I lie here at the Oasis, nearly motionless and needing to stay awake.  I have my spiral notebook and a pen, my book “Clockwork Angel,” my iPhone, and the tv remote, all within a crippled arm’s reach.  These are my choices.  (My coffee, my heating pad, my meds, and my girl are not choices, those are extensions of my being.)

Oh goody!!  Now you get to see how I have to weigh even the most basic of decisions!!  

Option 1: notebook and pen … 1st of all, how is my right hand feeling today?  Do I think it can hold on to a padded pen or pencil?  Since I’m lying down, I would need to use the clipboard to brace the notebook.  Do my thighs feel like they could handle the pressure of the clipboard and the scratching vibrations of my padded pen on the paper?  Answer: My right hand is achy and a little swollen from last night’s bout with a localized hive-session, so holding a padded pen would be added pain that I don’t need.  The skin on my thighs still kinda have a residual burn feeling from my last leg flare.  It’s not too bad at the moment, but it is sensitive enough to be annoying and the pressure of a clipboard resting on my thighs might reignite that flare.  So I guess I won’t be writing in my notebook.

Option 2: a hardcover copy of the book Clockwork Angel - 479 pages …  Is there enough strength in both of my hands to hold the weight of this book, or will I need to rest it on my legs?  Are my fingers feeling nimble enough to turn the pages?  Will my eyes be able to focus on the small print?  Will I be able to stay awake?  Answer: Again, my right hand is still swollen and achy so there’s no strength and no nimbleness either.  My sight, for the most part, is good, but I mentioned earlier that I’m tired.  When I’m tired and/or in extra pain, the Horner’s Syndrome that I have on the right half of my face takes over and my right eye droops, gets lazy, and can’t focus.  This might cause me to rest my eyes and I could possibly fall asleep.  So I guess I won’t be reading.

Option 3: iPhone … Can my thumbs maneuver around fast enough to play Angry Birds, Where’s My Water, Family Feud, solitaire, backgammon, Scrabble, Trivial Pursuit, Words With Friends, Tetris or bingo?  If I listen to my iTunes Pain Day play list (safe from heavy bass and drum sounds), will it make me cry out of loss again or will I fall asleep?  Answer: The thumbs that are attached to my still swollen hands are just as puffy and restricted from movement as everything else in their vicinities.  Also, I don’t feel as emotionally stable as I need to be right now, so listening to my carefully selected music might tip the scale away from my needed stability and level headedness.   So I guess I won’t be playing with my iPhone.

Option 4: tv remote with access to DirectTV … if I can just get my hands to work long enough to find a mentally stimulating documentary, tv show, or movie, I can put the remote down and sail into my imagination and quench my thirst for knowledge.  Let me just tell you now that there are too many absolutely pointless talk shows and infomercials and interviews out there today.  I need to be informed, not freaked out and disgusted and embarrassed for the idiots that don’t know how to shut up on live tv.  That is not relaxing for me.  AARRGGHH … now I am exhausted from all of that conscious cognitive bullcrap ... and a little re-stressed over my inabilities too.

So Normies, what do you have to be conscious of in order to “lie down”??  How many options do you have for this less-than-medial task??  Did you know that this is what we RSDers have to go through for each and every daily task??  And do you see how the Spoon Theory comes into play for us??  Remember, the next time you ask us to do something with you and we say “no,” it is probably not be because we don’t want to … it is, more than likely, because we are trying to decide where to use our limited energy and ability, and we would rather bathe to wash off the stinky remnants of our night sweats, than be in public all stinky and gross AND in pain.  We are picking our battles/spoons … It’s not personal, it’s just how we have to live.

I have faith that one big ol smile from my Team will distract me from my decision making and my boredom … and I have faith that one kiss will break up the concentration/pain creases on my forehead.  Just knowing that this brief time of pain induced, solo-soldiering, slothishness has a specified timeframe is such a wonderful change from feeling abandoned and exiled from my own life for an unknown period of time.  I am truly blessed (and lucky as hell) to have found my Team … or, better yet (and more accurately), that he found me!!  

Temporarily Volunteering for Pertinacious Displacement

In other words, despite my health issues and nasty hatred for the Skank and her damn winter, I have willingly relocated myself for the express purpose of doing something for a brief period of time.  What is that “something,” you ask?   I am attempting the re-accumulation of implements consisting of a shallow, small oval on a long handle … aka … spoons.

Man, I love using big words … eh, let’s go with I just love to use words … period!!  For me, it’s not a snotty, snooty, contemptuous, self-promoting, over-educated, or pompous thing.  I simply love words!!  When they are used correctly, they can reveal the innermost workings of the most complex individual; they can provide the sentences for a great story; they convey a certain level of conscious intelligence; they separate us from the Neanderthals;  they comfort; they inform; they provide us with the most common means of communication; and, for those of us who can’t always use our bodies, they are our actions.

But not all words are used in a positive manner.  Some words can hurt, whether used with intent and malice, or even worse,  unintentionally.  Sadly, most people don’t pay much attention to the words that they use, so they are never conscious of the damage that they may or may not cause.  As for me, I hear the words, I know the meanings of the words, and I take these words at their meaning.  The only exception here is the use of sarcasm, but there's more of a tonal quality to it.  And I, for one, find it freaking hilarious when someone tries to be sarcastic and uses a specific word, thinking that they’re giving their statement emphasis, only to realize that they obviously do not know the meaning of the word they have just used or it's context.   (Why must I find ignorance amusing?)

I also love to make up words and coin phrases (Jennisms) that can accurately describe and/or emphasize my intended meanings, such as: Cripplympics, sofa surf board, Bodieland, and battle-picker, just to name a few.  This love of words is also why I name places and things.  Places like the Chalet, the Ranch, the Country Estate, the Happiest Place on Earth, and the Oasis have all gotten their names because I have developed some kind of emotional tie to the place.  Saying “so-and-so’s house” just sounds too impersonal and blechy to me.  Things like “Bertha” and the “Buttmobile” are just fun to name.  I have no real reason for that part of my obsession.  … hmmmm … anyway …

You’re probably asking, “What in the sam-hill-heck do words have to do with spoons?”  Am I right?  Well, lemme ‘splain …

A few months ago I was shown an article that was written by a young woman with Lupus.  (Lupus, although  having numerous differences, is like RSD in that it is a chronic pain/auto-immune disease.)  I have never been able to use my own words to accurately describe what it is like for us RSDers to get through each and every day.  I have merely referred to myself as a “battle-picker” and left it at that, thinking that there was no real way to convey what it’s like.  This woman has given my daily tasks and chores a name … Spoons.  If you are an RSDer, a caregiver, or a loved one, please … please, please, please, please take a few minutes to read her story at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/.  I promise that you won’t be sorry and maybe you’ll even gain a little more insight into how we are able to actually do the things that we do!!

Since the Skank took my last one, I have faith that I will re-establish my spoon collection while hibernating at the Oasis for a few days.  Meanwhile, I will continue to use my love of words to spread awareness for RSD, because words give my imagination a pain-free outlet of expression.  ;)  

Kiva Samson, reporting Live from the Chalet

Hi Ho!!  Kiva the Dawg here!!  You missed me, didn’t you?  Mommie thought that you might, so today she gave me a choice … 1) write the blog … or 2) write the blog well.  Since I know for a fact that she is the Grammar Nazi, I will be the genius mutt that I am and choose “2.”

Not that I care about it too much, but Mommie didn‘t get to go on her trip to see Auntie CaliAngel.  I was all set to receive Princess Kiva treatment from our Team for the whole weekend and I was excited!!  I really really like him.  I was gonna go to work for a day.  I was gonna go to the Oasis for a retreat.  I was gonna go to Unca D and Auntie C’s to eat human food.  And then I was gonna welcome my Mommie home with hugs and kisses and yelps and Beagle bays.  Yes, I would have missed her, but not quite so much this time.  And now, the point is moot.  (Yes, I'm a dog and I said “moot” … got a problem with it?  I didn’t think so!!)  It snowed a lot a lot on Thursday night and Mommie began to worry that she wouldn’t be able to go away.  (Mommie said there was over a foot of snow, so yes, I used “a lot” twice)  Something else happened that night too and I’m not entirely sure what it was.  All I know is that, for the time being, everything is ok, but those 2 things kept my Mommie home with our Team and me!! 

On Friday, I kept hearing the words “snow day” which, for me, meant “stay warm, dry, and home.”  Mommie did leave for a little bit and I got to take a nap with our Team in the big, brown, comfy chair.  Then she reappeared with Unca Houdini (oh how I’ve missed him!!) and I got hugs and belly rubs from him.  Mommie and our Team decided that we could still go to the Oasis for a retreat, so they packed up the car, loaded me up into the backseat and we went for a … wait for it … wait for it … wait for it … a drive!!!  I must be the luckiest dog alive, I’m telling ya!!  Cuz then yesterday, we still got go to Unca D and Auntie C’s for human food!! … and some strange movie where all of these really big, scary men with round hats kept hitting each other.   We came home to the Chalet with full bellies and leftover food (I hope I get some more human food today).

But Mommie doesn’t feel well this morning, I can tell.  I don’t think she was feeling too hot when we got home last night either.  She says it’s just “the normal stuff” but I don’t like “the normal stuff.”  After four years with my Mommie, I know that the “normal stuff” means that she hurts pretty bad.  Especially when she has to get out of bed at 3:30 in the morning because her body can’t handle the pressure and weight of the covers.  I followed her to the wetroom and saw her take the Cat-of-mine nose spray stuff from the little cupboard with the mirror on it.  That's how I know that she’s not doing too good.  She always cusses right before she sprays it up her nose, too.  I’m not sure what she says, but I know that her Mommie wouldn’t like it at all, because she always says “Sorry Mom” as soon as she’s done.   It must make her feel better though, because she was able to put on her pink robe and she stopped walking around like a creepy movie monster and started moving around like the little old ladies that I like to bark at as they walk their snacks-on-a-leash in front of the Chalet.  I only want her to feel better.  I want this RSD stuff to leave her alone.  I don't like seeing my Mommie like this ... and neither does our Team.

Well, I should probably go check on my humans now.  Mommie is sofa surfing, our Team is in Bodieland and I need to go position myself so that I can keep an eye on both of them.  I’m the dog.  That’s my job!!

I have faith (yes, even a canine can have faith, trust me!!) that Mommie will feel better later.  But if, by chance, she doesn’t, I have faith that I will take care of her to the best of my ability today until our Team gets done with work and can come take over for me.  I will kiss and hug and cuddle with her.  I will watch documentary movies with her so that her brain remains stimulated even though it hurts to move her body.  I will force her to take baby steps to the back door to let me outside so that she can keep moving and not stiffen up.  And, hopefully, I can get her to “nap” and not just “rest.”   She still has faith too … after all, she IS my Mommie!!

If you would like further information about how you can help yourself to understand more regarding how to deal with someone with chronic pain, like my Mommie and her RSD, go to:
www.wikihow.com/Understand-Someone-With-Chronic-Pain

Yes, Yes, Stress

Ah stress ... I haven't missed you!!  Really, I haven't!!  But I will handle you, as usual!!

I am not going to California today, and it has absolutely nothing to do with the 10" of snow on the ground (and the storm has only just begun).  I am seriously bummed, but family comes first ... Always!!

Last night, as I was checking the weather and airport statuses for my trip, my sister, brother and I received a mass text from Mom.  (you really gotta love how my family communicates!!  but hey, at least we communicate!!)  The text said that, "unbeknownst to her" (yes, direct quote) Dad had been having minor chest pains for a few days.  Really??  And he didn't tell anyone??  Noooooo!!  (duh!!)  She got him in to the doctor's office, where they were told to head on over to the hospital to be admitted.  The doc wanted to keep an eye on him overnight.  (At this point, Dad's biggest concern was what the CU/Oregon St. score was ... and having a beer.)  They will be running tests on him today to determine the cause and the prognosis.  (side note: I just received an email from him saying "good morning."  that's all.  nothing else.  poor guy is lonely, bored, and trapped ... not a good combo for my old man!!)

Houdini freaked out, for lack of a better term (he's kind of a drama king, but we still love him), and drove from Denver to our local hospital last night ... in the snow storm.  The Bombshell and I traded texts for the better part the night, absolutely not amazed in the least that Dad kept this to himself.  But she was ready to hop in the car and start driving from KC ... until we checked road conditions along I-70.  It is so hard to have her so far away and separated by a storm!!  She and I have learned how to tag-team the family over the years and without her, I have no one with whom I can tag or vent to without explanation.  Needless to say, I am charging my iPhone to full capacity right now, ready to update her ... and the rest of the praying masses.

Let's take a different perspective for a minute ... This is supposed to be the biggest snow storm of the millennium, dumping anywhere from 12"-24" of snow along the front range.  I have already mentioned that I've been feeling it in my bones for days, and now the cold is trying to cause a skin flare.  Aaaaaand my dad is in the hospital.  But I will keep fighting, keep persevering, and continue to be present for my family.  Warning: when this storm and family stress have subsided, I'm gonna collapse.  It's just how I operate.  I will push and push and push myself until the stress wanes, and as soon as I let my guard down for 1 minute, the pain will take over and force me to deal with it.  I'll be ready for it, but my "team" will be in for a roller coaster ride of snarky patheticness.

I have faith that Dad will be ok and Houdini will chill out.  I have faith that the Bombshell will do everything in her power to try to get here, but will be denied travel by the Skank.  I also have faith that Mom will be Mom and her strength will resonate thru all of us.  Time for me to submerge myself under the razor sharp pelts of the shower so I can be there for my fam!!  HAPPY SNOW DAY!!  (meh!!)

Sanctuary NOW!!

It would appear that the Skank has declared a personal war against me.  It couldn't be because of her nickname, could it??  Nah ... I didn't think so!!  (Skank = Mother Nature, in case you're late to the party!!)  I'm serious about that statement though.  I have a date with a plane tomorrow, bound for the sunny skies and tanned beaches of Southern California, and according to my local meteorologist, we're looking at anywhere from 8"-18" of that nasty, white, cold, frozen crap here along the front range, starting at 2 pm this afternoon.  Freaking seriously???  I finally get a vacay on the books and she thinks that she can deny me my CaliAngel and the beach??  WHAT THE FUUUU...(sorry mom)...

No, I'm not bitter ... I'm pissed!!  And not just because she's jerking me around with my trip!!  I've been feeling this shitake for the last 2 days.  The turning forks that vaguely resemble my skeletal system have been ringing like the bells of Notre Dame.  What's worse is that I can totally identify with Quasimodo's screamings of "sanctuary" as he vibrates back and forth between the damn bells!!  I am really trying to keep my composure but this has all of the feelings/makings of one nasty-@$$ "storm from hell".  (I don't have to apologize to my mom for that one ... it's her quote from this morning!!)  I've been trying to finish laundry all morning but I find myself having to make 6-7 trips per load.  It hurts too much to carry the laundry basket and I'm lucky if I can carry 4 pieces of clothing at a time, to and from the washer and dryer ... and then all of those trips make my feet even more sensitive than they already were.  So I have positioned my laptop at my kitchen table once again (1/2 way between the washer/dryer and my sofa surf board) so that I can have a resting place but still keep moving.

How in the sam-hill-heck am I supposed to stay positive when my mental and physical well-being is at stake??  I'm trying, but ... son of a motherless goat, it's tough!!  Maybe if I give myself permission to breakdown for an hour or so, just to regroup and refocus, I can get back on my Pollyanna track again.  Yeah, that's exactly what I think I'll do!!

I have faith that regardless of whether or not I am able to get to Cali, I will accept my fate ... either with a smile (Cali) or a bad attitude (CO), I will accept it.