SEE YA 2011!!! (ya bat rastard!!)

December 31, 2009 - be the best aunt/daughter/sister that I can be … and make it way of life so that it never has to be a ‘resolution’ again.  (DONE!! And really proud of the person I’ve become because of it!! … And so is my family!!!)

December 31, 2010 - be patient; give myself some time to heal physically and emotionally; and take care of me … This resolution was multi-faceted.  I needed to get my head and body on straight ... or as straight as possible, anyway.  At the end of 2010 I got really sick … and I mean really sick!!  I spent the last full month of volleyball season followed by the last 2 months of 2010 on an oxygen tank, pneumonia meds, bronchitis breathing treatments, and daily doses of the pain meds that I usually only take for emergency break through pain.  The docs wanted to admit me to the hospital, but I was the only coach for 22 girls.  I didn’t have time to be sick or stay in the hospital.  So I bedazzled my portable O2 tank case and made it a fashion statement!!  I also lost 15 lbs … from where, I‘m still not sure.  All of this started with one of my girls (volleyball players) that just had a cold … a little sniffle.  But she needed to share it with me, because sharing is caring, after all.  It has taken me over a year to get back to where I was before volleyball season of 2010.  I had also tried my hand at a long distance relationship with a pretty great guy.  But since we wanted different things, and the distance was beyond annoying, we decided that it wasn't meant to be … and that was a tough pill for me to swallow.   Keep in mind that I am the only one in my life that I have to take care of me.  When I‘m sick, when I‘m in pain, when I‘m heartbroken, I am all I have, so it takes me longer to heal and mend.  ... it is hard-assed work being an RSDer AND an RSD caregiver.
(But I did it and I can now say, “DONE!!”)

December 31, 2011 - quit being so damn patient and understanding all of the time, take a stand, fight for what I want and make it happen.  (yep, there’s that word again … want … I’ve really been thinking a lot about this the last few days, can ya tell??)  I am 42 …almost 43... years old and I’m tired of waiting … for everything!! I am ready to be proactive again!!

Why, you ask??  Because a fantasy world of “life” is no way to “live.”  I spent most of this year living in my imagination while I took care of myself (in more ways than 1!! …speaking of which, I need to get some new batteries).  2011 was filled with no sex, no romance, no vacationary travel (yes, another Jenn-ism), and no coaching.   But it was also filled with my ah-mazing fam … so I was able to hone my skils from my resolution for 2010, and that was actually kinda fun at times!!

And now ... 2011 was tough and lonely and emotional, but character building.  I set rules for myself and stuck by most of them.  This self-discipline crap is for the birds!! (but you know I’ll keep doing it … gosh darn it all to Hades!!)

I am a stronger person with a fighting will to live … and dammit, I’m gonna in 2012!!  No more waiting idly on the back burner, no more playing the role of “option,” no more volleyball hiatus, and no more stagnancy at the Chalet!!  I have faith that I will have a life in 2012 … WATCH ME!!! 

"Wanting" Makes My Brain Hurt

My heart is still gushing from my Christmas Morning Munchkin Miracle … but my brain is, once again, perplexed.

Christmas is the only time I can afford some of the necessities like new underwear, socks, leggings, perfume, and Ziggi’s gift cards … (Ziggi’s is my favorite local coffee shop, with 3 convenient locations in Longmont to serve you … and me!!).  I say “afford” because these are a few of the things I find in my stocking on Christmas morning … every year.  This year, along with the necessities, I received a gift that has me stymied.  A pre-paid Visa for $100 with one stipulation … I am only allowed to spend it on something that I want.   (C’mon Mom and Dad!!  You know that my brain doesn’t function like that anymore!!)  Ever since my RSD forced me to retire and the government started paying my joke of a salary back in ‘05, I have had to change how I spend money and how I think about spending money.  These days I can only think in terms of “need,” and “can I justify spending money on that?”

I have posed this conundrum to a few of my friends in the hopes that one of their suggestions will spark an, “OOH, I want that!!”  I was offered suggestions such as: a cure for RSD (that’s gonna take a whole lot more than $100 and me … that needs an army of suport!!); coffee and creamer (those are necessities and are already factored into the miniscule budget);  Pepsi (again, a necessity that‘s been factored in); a sibling for Kiva (which would end up costing me more than $100 in the long run);  more snow (I’m contemplating a sever beating for the “in-law” that suggesting that one … but I still <3 you JR!!);  California (this one is actually a fantabulous suggestion!!  I leave in 31 days to see my Cali-Angel … but the folks want proof of whatever I buy and I’m not sure that a bunch of receipts for virgin daiquiris at the beach meets the specifications); a new car (for $100??  HAHA … yeah right, Red!!);  “VB” which I’m assuming has something to do with volleyball … but it’s winter, Warrior Mama, and I live in CO, not Fla!!); and of course the peanut gallery tried to chime in with randomness … and they will both get head-slaps-Gibbs-style the next time I see them.

So, after some deep and serious brain-and-soul searching, here is the list of some things that I can justify wanting …
An island close to the equator (i'm purdy shur that $100 won’t cover one of those tho); a pair of kick-ass heels ($100 might only cover the left one tho); a date for New Year’s Eve (but $100 for a date/paid-escort would only guarantee me someone with a mouth like Russell Brand, a body like George Castanza, and the personality of a dead fish … however, it would pay for a few months of an eHarmony membership ... as long as I don't advertise my crippledom); a new tv/dvd player for my bedroom ($100 would buy a great one of those … at a pawn shop);  a 1950’s tabletop jukebox for my kitchen table (I’ve already put a couple of red ones on my eBay watch-list … but it’ll still take more than $100); new flufferings for my new Bodieland (yup, more jenn-isms, but my current flufferings are still great and work very very well);  more flare clothes (but that’s a ‘need’ not a ‘want’); and completing my Shirley Temple and Cary Grant movie collections (for all of those cold, lonely nights that I spend in the Chalet … finishing my collections should get me thru until Valentine‘s Day).

It has been so long since I’ve been able to think in terms of “want.”  "Wanting" only brings heartache and disappointment to me.  I have a ton of wishes and fantasies, but I know that they’re not realistic.  I’ve come to live by the term “need” … because, honestly, I cannot afford to “want,” (financially and emotionally) … I either need it or I don’t ... period.  I have faith that I will eventually figure out what it is that I want, but not before it gives me a migraine!! Is this really what my life has come to??  Am I seriously balking at thinking about what I want??  I can't even remember the last time that someone asked me what I wanted, let alone facilitated it.  I am always grateful for whatever I receive, whether it's from my family, a friend, the PTB, or my Entities ... and I will always find uses for whatever I'm given, but I am appalled at myself for giving up, completely, on wanting anything .  I'm gonna hafta sit myself down and have a long talk with myself!!  I may even hafta ground myself over this ... we'll see how I respond to my lashing.

Best Christmas Gift/Painkiller EVER!!!

Still in the spirit of Christmas (you’re about to find out why),  I find myself quoting to myself from the Good Book.  No, not Twilight, not anything by Sherilyn Kenyon, not Sonnets from the Portuguese, not Sequoya’s Syllabary, not Pride and Prejudice, and not How to Coach Volleyball for Dummies … I am speaking of the Bible.  

Quotes like: 

     Matthew 21:16 - "…from the mouths of babes"

     Isaiah 11:6 - "…and a little child shall lead them"

     I Corinthians 13:13 - "So faith, hope, love abide, these three: but the greatest of these is love."

     Psalms 23:5 - "…my cup runneth over."

If you’ve been following my blog, you’re probably saying to yourself, “Ok, she’s talking about a Munchkin again … more than likely, it’s her niece, Da Gurl.”  Well … you’d be absolutely, positively, without a doubt, correct!!  But there is a background story here, too, that factors in my RSD, my uncanny ability to be a martyr, and my skills in the kitchen.  Here goes the story…

Earlier last week, my dad asked me if I would cook Christmas Eve Dinner in the untraditional form of Mexican food.  “Seriously??  I get the honor this year??  HECK YEAH!!”  Six adults and two toddlers … I can plan this!!  What I didn’t plan on was doing it all by myself.  

Fast forward to the early afternoon of Christmas Eve.  On the menu were homemade chicken enchiladas, and cheese enchiladas, homemade green chili, homemade chili con carne, a taco/burrito bar, refried beans, black beans, and Spanish rice.  The Munchkins were napping so I got out the knives, the cutting boards and the raw meats to start the prep work.  Aaaaaaaand then my sister decides that that was the perfect time to clean Mom’s fridge.  Granted, it really needed to be done, especially with all of the leftovers that were going to get jammed into it over the weekend, but I had been planning on some help.  Checking my line of sight, I looked for other help.  My brother was nowhere to be seen.  I think I’ll start referring to him as Houdini because of his astounding ability to disappear without a sound … like, *gone* ...  car and all!!  <POOF!!>  So needless to say, he was of no help.  Mom was taking advantage of naptime by wrapping gifts and Dad was working on his “honey-do” list (trust me, that is 1 list that cannot be neglected in our family).  I was my help.  So I cut the chicken and set it to boil; I cubed the pork, floured it, and browned it; seasoned and browned the beef, and cubed and melted the cheese for the chili con carne; chopped and diced 2 large onions, six roasted green chilies and 1 whole bulb of garlic. 

It was about 3:30 and my sister had hung the “vacancy” sign on the fridge door, the Munchkins were up, and Mom was back downstairs.  There’s an annual party that my sister, her husband, the folks and, now, the Munchkins go to every Christmas Eve, and my sister needed Mom’s help getting the Munchkins changed, dressed, hair done and out the door.  After the party, Mom was going with my sister’s fam to church at 5:30 and Dad was going to come back and help me.  (Houdini was still a no-show.)  4:15, house was quiet except for the Christmas music via Sirius Radio combined with the methodical rhythm of shredding chicken and rolling two large pans of enchiladas.  5:30, the green chili was simmering and thickening, the chili con carne was done and awaiting to fulfill it’s role as Appetizer along with a basket of tortilla chips, a bowl of hot salsa and a bowl of mild salsa (we like to humor Mom’s sensitive pallet like that).  The 1st tray of enchiladas were in the oven and I had just started on the rice and vermicelli.  <phone rings>  Dad: “I stopped for a beer.  I’ll be there in 10 so you can go take care of your dog.” (yup, she’d been cooped up in the house, all by herself,  for over 5 hours).  <sigh>  No help.  I picked myself up, dusted myself off, and got back to the Spanish rice.  <DING DONG> … thinking that it was Dad messing with me, and was home, I waddled to the front of the house to answer the door, mentally brewing every sarcastic zing I could think of.  (my feet were swollen and beginning to flare, my legs were aching and hips were screaming.  hence the waddling and the attitude … but my lower half felt great compared to my upper half after all of the chopping and stirring and rolling.)  Imagine my surprise when I see a young teenage girl on the other side of the door selling cookie dough … on Christmas Eve … after dark.  Five minutes later (having to explain to her cute little self that I didn’t live there, I didn’t want any cookie dough, and the homeowners were not home at the moment) I forced myself to run back to the kitchen but I was too late … I had burned the rice.  (Frustration level rose, stress level rose, pain level rose ... you know the procession!!)

Finally Dad came back, I went home to feed the Keevester and let her out to run for a bit while Dad manned the kitchen.  My defenses dropped, just a tad but enough to let the flares start.  I grabbed my go-bag and put on the flare clothes that were inside of it so that I didn’t haven’t to open any dresser drawers … too painful.  I went back to the castle to be with my family for dinner (Houdini had reappeared) but I was in too much pain to eat … or sit down … or stand up … but I stayed.  This is my family, I love them and I would do anything for them … obviously, to a fault.  I had to forego Christmas Eve church that night because of pain, but I had spent time with my family, that was what was important to me.

Christmas morning, I put on the new ultra soft sweats that Mom and Dad had given to me the night before and headed back to the folks’ house.  After the charge and attack on the Santa gifts in the living room, I went into the family room to “pause” on the couch for a bit.  Polar Express was on a loop on one of the tv stations and I was able to shut down and work on my breathing.  Until I heard, “Up!!”  I opened my eyes to the adorably handsome face of my nephew, still in his Christmas pajamajams.  I scooped him up and sat him on my left side.  He snuggled into me and I closed my eyes and realized it didn’t hurt for him to touch me.  <LOVE>  Then I heard, “Autchen.  Up.“  (Autchen = Aunt Jenn) There, at my right knee, was the Christmas miracle face of my niece.  I lifted her up and sat her on my right leg … she’s still light enough to do that.  We sat silently, watching the movie, just the 3 of us.  As the elves were lowering the big, red bag of gifts onto Santa’s sleigh, Da Gurl threw her arms up over her head, grabbed both sides of my face (still facing the tv) and said, “Love Autchen.”  Not, “I.  Love.  You.  Too.”  She said it first.  Unsolicited.  Without repeating someone else.  Matter-of-factly.  “Love Autchen.”

All of the physical pain and lingering abandonment issues of the night before vanished in less than a heartbeat.  My heart was the only body part that felt swollen … well that, and my tear ducts.

Keeping my faith and holding my tongue gave me the kind of hope and joy that only unconditional love can bring.  And to me, THAT is the true meaning of Christmas.

I hope you all had a very blessed holiday, regardless of how you celebrated, and were able to share the love, faith, and hope with your families and friends.

My Haven ... let's not jack it up!!

I like that people come over to my house and say, “It’s so welcoming, cozy and warm here.  It’s like instant valium just by walking through your door.”  

In all honesty, I do try to keep the Chalet as cozy and relaxing as possible … for me!!  But it really does make me feel good knowing that others like to come over and visit me for the same reasons.  It is important for me, physically-mentally-emotionally, to decrease the amount of tension that can sometimes lie stagnant in the air, especially this time of year.  And in my humble opinion, atmosphere is everything!!  I try to create a haven ... a setting that is devoid of pain spiking circumstances.  And most of my friends and family respect that … and seek me out because of it.

It’s not as if I’m Nostradamus, Ann Landers, the Dali Lama, and Betty Ford reincarnated and raised by Dr. Ruth, it’s just that I have a unique perspective of life.  And most people know this about me.  So when they need advice, or help, or a slap upside the head, or just some encouragement, they know that they can always come to me.  I deal with a lot on a daily basis just from my RSD alone.  The pain ... the emotional swings ... the frustration of not being as independent as I want to be ... it completely depress me, so it does me good to get out of my own head to help others … and it doesn’t hurt my karma either!!  Besides, I can live vicariously through their antics without having to personally experience the negative aftermath that inevitably follows poor decisions.  And yes, there are even times when I learn from what others experience.  I find a way to adapt that knowledge into my life.  See??  Ever-morphing!!

I despise drama but I know how to deal with it … not that I like to, but I know how.  I can help to calm down anxieties and get people to work through their drama … when I’m asked.  I’ve been told that I’m a good listener and have a sympathetic ear.  I am also told that the rational and unbiased counseling that I have to offer is 'priceless'.  Now I don’t know about that last one, but I have survived a whole heap and learned a ton of lessons in the process ... and I’m more than willing to share what I’ve learned.  I will always keep learning and sharing until the day I die ... it's just who I am.  I do not offer this ‘counseling’ without permission, though.  Not everyone is ready to fix their own problem … sad but true fact.  I do not have the power, nor would I even want, to fix anyone, but I do have the innate ability to help people fix themselves … they just have to be willing to listen and make the necessary changes to be happy again.  Seeing someone turn their life and karma around for the better is 'priceless' to me.  I really do get a kick out of it!! 

However, I do not enjoy nor do I appreciate when someone else spends my stored energy and intrudes upon my Pollyanna attitude with the same friggin woe-is-me BS every single time.  There is always something positive that can be said about any situation.  You just have to be willing to find it!!  What really chaps my arse is when someone uses me and/or my generosity for their own selfish gains … or just to listen to the sound of their own voice while they bitch and try to twist truths to their own advantage.  Whether they want to steal my soul or my meager, but needed, possessions: they seek me out for help; cry on my shoulder; rant and vent while I sit quietly and listen, internalizing their stresses; taking only what they want from me and then they just walk out … leaving their poo on my doorstep.  I don’t mind helping someone work through their own poo from time to time, but the ones that do it habitually are finding themselves more cut off from me than ever, these days.  It’s sad because it’s the Christmas season.  The season of giving and sharing and loving.   But I have had to draw a line for my own well being.  In my opinion, there is only one occasion for which it is ok to be selfish, and that is when I am protecting myself physically, mentally and/or emotionally.  I practice Verbal Regurgitation with 2 dear friends and put my faith in the fact that I am my sole, earthly protector.  And <sigh> because of this, the Chalet will forever remain my haven!!!  

It's difficult, yet reassuring, to believe in karma ... but I have faith that I will continue to be of assistance to anyone who asks and is ready and willing to fix their own karma and happiness.  I also have faith that I will forgive the abusers, but even etch-a-sketch brain can’t cause me to forget about being used.  I'm a lot smarter than some people think!! ;) 

Let's Go With Christmas Miracle On This One

Yesterday was weird ... but the good kind of weird...

I am still in shock and the PTB are laughing at me again.  Just when I, admittedly, get fed up with waiting, they wave their magic wands and <POOF> I almost regret a few of my rantings ... almost.  I choose to call the happenings of yesterday a Christmas Miracle.  What happened, you ask??  Well let me just tell you ….

My niece did great in surgery!!  I have not yet heard how her night was last night, but I have high hopes.  My parents and my sister sent pictures throughout the day and my sis and I spent the better part of the afternoon texting about …. well … everything!!  From family to family recipes to Paula Dean recipes, to Pinterest, and, of course, Christmas … I was really worried about that last one.  With Da Gurl‘s surgery so close to Christmas, and the fact that it takes 9.5 hours to get over the river and through the woods to Amma and Paw‘s house, I had resigned myself to believing that we‘d probably figure something out to celebrate Christmas next week.  (something to which my family is not accustom) … But my sister informed me (while discussing the importance and necessity of Swedish Rye Bread) that Little Dude will be coming back to CO with our parents tomorrow and depending how Da Gurl did last night and how she does today, she will probably be coming out with her Mommie and Daddy on Friday!!  <insert happy Snoopy dance here>

Next miracle … Last night, while cooking dinner, there was a knock at my door.  Kiva went bonkers!!  Barking, growling, jumping at the window, but no whining.  Now, anyone that is familiar with my dog knows that when they come to the door, she’ll start barking until she recognizes who is here and then the insidious whining begins.  Last night there was no whining, which indicates a “new” person at my door.  It was a face I had not seen in almost 4 years.  It was the face that is attached to the body that bears the hand that signs my alimony checks.  2 days early even!!  AND a coupon for my fave local Mexican food restaurant … and a small card that said Merry Christmas AND had a smiley face.  If you know me and my history at all, you’ll understand my shock.  Now wanting to look a gift horse in the mouth, I will just say “Thanks Waffles, and Merry Christmas to you too.”

Miracle #3 … Mother Nature, the skank, did bring snow yesterday afternoon/evening, but it didn’t hurt as bad as it usually does!!  (I know, right??)  I don’t know if my body was still on guard from the stresses of the morning, or if I was somehow distracted from the pressure changes, but the only thing I really felt yesterday was the stress that resulted in exhaustion.  And this time of year, I'll take it!!

So I’ve changed my mind … it is no longer “be careful what you wish for” … it is now “be careful what you bitch about.”  (sorry Mom, but it’s true)

Just more proof that my faith has escorted me through another series of potential let-downs … and I’m still here to write about it.  It is definitely a good day to be above the dirt!!

Be careful what you wish for … and how you wish for it.

Five months ago I prayed, wished and asked, unspecifically, for patience  … and it is still biting me in the oostakaka!!  The PTB (Powers That Be) must’ve decided that I needed patience in every single aspect of my life because I now feel as though I've been placed on life’s eternal waiting list.  Sure, I give off the persona of being patient, calm, cool, and collected most of the time … but on the inside I’m almost always going friggin nuts!!!!  It adds to my stress level and we all know what happens when that level rises.  But … I can honestly say that I've learned my lesson here.  (and adjusted my meds accordingly, of course … but still waiting for them to kick in)

I have a strange brain, this is no secret.  I make up all sorts of conversations and lectures in my head.  It’s kinda like my own knights of the roundtable … the sarcastic cynic, the optimist, the masochist, the angel, the instigator, the intellectual, the coach, the cheerleader, the athlete, the freak, the rationalizer, and the dreamer.

I truly believe that this is how the PTB get their kicks … they call a meeting of my roundtable, the group votes, and then the group leader of the day (today it’s the sarcastic cynic) reveals their findings … “Oh, you can’t be in KS with your family for your niece’s surgery??  Wait and word will come to you.”  ~  “You need a what??  A new car??  Wait and remain stranded.  It will happen some day.”  ~  “Hmmmm … A cure for RSD??  That will take some time to formulate, please hold.”  ~  “You need it to be warmer??  Well, you can’t afford a beach so I guess you’ll have to wait til summer!!”  ~  “That person you want to see??  Yeah, we’re gonna keep you waiting there too.  Your frustration has become amusing to us.”  ~  “You need to pay your bills and finish Christmas shopping??  We’ll see that you get your alimony check.  We always do … even if it is always late.”   ~  “Your body is feeling a little better today??  Ooh ooh … just wait, we’re gonna make it snow later this afternoon.”  

All the while, the PTB just sit back and laugh as they watch me squirm and smoke and pace and trip over thin air and spill coffee and pace and pace and pace … yet again.  I’m done!!  I am done asking for patience!!  I am done waiting!!  It‘s time to take matters into my own hands!!  (uh oh, the masochist is fighting the sarcastic cynic for control now, this could get bloody … enter the rationalizer)  

Do me a favor, save whatever amount of sanity you have left and the next time you wish, pray or ask for patience, be specific!!

I have faith that I can control my knights, even though I’ll never be able to get them to shut up!!

SIDE NOTE:  The meds have kicked in and I just got word that my niece is finished with surgery and is in recovery ... so hopefully I can stop pacing now too!!  It’s only taken me 5 hours to write this in between laps.  Thank you PTB!!!

Occupy the Chalet

Mommie doesn’t feel like writing, so I took over her moveable writing window … because ... that’s the kind of dog I am.

Hi.  My name is Kiva.  I’d sniff your butt, but Mommie doesn’t like nose prints on her writing window.  It is very nice to meet you, tho.

A couple of nights ago my Mommie started getting sick … again.  All I can say is that you humans need to learn how to keep your viruses to yourselves and quit being mean to my Mommie!!  I mean, I love her more than bacon but when she gets sick, that Coach Crankypants lady comes to visit and I run for my room … fast!!  (underneath the dresser next to Bodieland.)

She coughs like she has a furball stuck in her tail; She talks in short, raspy barks; And how is she supposed to sniff butts and say ‘hello’ when she can’t breathe through her nose??   I tried to snuggle with her last night but she was burning up and leaking water from her face.  I tried to lick it off but I couldn’t keep up with it.  Something about her fever breaking, whatever that means.  Yesterday we watched 8 hours of Charmed reruns … which is 56 hours of my life that I’ll never get back.  And last night before bed, I caught her playing with the big writing window and lining up reruns of that show about those high school kids that sing and cry a lot.  Please pray for m…I mean her!!

Oh wait … hang on a sec … now I hear water running …

AAARRRRROOOOOOO!!!!  She’s getting in the shower!!!  She feels better!!! (please God, no Glee now?!)  BRB, I have to go stand guard (lie down) on the soft, fluffy, yellow bathmat and keep it warm for her.

Ok, I’m back.  Mommie said that I should tell you a little about myself since I‘m feeling like an assertive little brat today … You already know my name but my nicknames are: Key, K, Kivuhla, The Keevester, and Dummy.  I just turned 5 last month and I am a German Shepherd/Beagle … but Mommie calls me a Swedish Rusk Hound.  (What???  They’re good!!!)  I can spell too!  I know that p-a-r-k means that I get to run and jump and run and run and run!!  (I like to run.  I think it’s the Shepherd  in me … maybe the German, but I doubt it.)  I also know that r-i-d-e means that I get to go somewhere in the car.  I could stay in a car forever!  Mommie took me for a 10 hour drive one time and she called me a “rock star traveler.”  I didn’t have to tinkle for the whole drive but when we stopped for more go-juices (gas and water and coffee) she hooked my roaming leash to my collar and we found places for me to walk and stretch and sniff.  I only wish I knew what “camel bladder” means … she’s says that to me a lot.

But I do love my life … except when she leaves me.  I don’t like that so much.  But I love it when other people com to see me.  My uncle is fun … usually … sometimes … when he’s in a good mood … rarely.  Auntie Docktor stayed with me last time that Mommie left and I love her lots!!  And then from late April until early October, Mommie takes me for walks on my orange, short leash.  She used to use my pink, roaming leash, but I kinda like to run around her in circles … which usually doesn’t end too well for either of us.  And did I mention that squirrels fascinate me?  It’s so cool because we have so many of them in our neighborhood for me to chase!  But even though we don’t go anywhere or do anything in the winter, we still have fun.   Mommie spends a lot of time in the food room.  She calls it “cabin fever” but I call it “Kiva-heaven”.  She’s always making something … mmmmm rusks, pig butt, chex mix, breakfast burritos, green chili, Swedish meatballs, Popeye and Lewis dip … and I get everything that touches the floor … ya know, sometimes I think that she drops food on purpose just so I can taste it.  Yeah, my Mommie’s cool like that.

Oh no … I gotta go now.  The mail lady should be here soon and I need to be ready to scare the crap out of her.  Thanks for reading about me.  Oh, and Mommie says that she still has faith even if she doesn’t have her sanity anymore.

ChRSDmas Carols for the Whole Fam To Enjoy

RUDY THE RED LEGGED CRIPPLE
(to the tune of Rudolph the Red Nosed Reindeer)

Rudy the red legged cripple
Had a very glossy limb
And if you ever saw it
You would say “What’s wrong with him?”
All of the genius doctors
Used to laugh and call him names   (like LIAR!!)
They never listened to Rudy
So he hung his head in shame
Then one snowy Christmas Eve
Santa came to say
Rudy with your leg so sore
Rest it in sleigh once more
Then all the doctors listened
A cure is what they went and found
Rudy the red legged cripple
To your chair you’re no more bound
___________________________________


OH RSD
(to the tune of Oh Christmas Tree)

Oh RSD, Oh RSD
Thy symptoms ever changing
Oh RSD, Oh RSD
Thy friggin symptoms ever changing
Sometimes you’re cold
Sometimes you’re hot
Sometimes you burn
I wish you’d rot
Oh RSD, Oh RSD
Thy symptoms ever changing
___________________________________


RSD CROCK
(to the tune of Jingle Bell Rock)

RSD, RSD, RSD sucks
RSD blows and RSD grows
Isolated, frustrated, none of it’s fun
The winter chill has just begun
RSD, RSD, RSD sucks
RSD burns and RSD churns
No dancing, no prancing in Jingle Bell Square
Cuz there’s frosty air
What a lousy time, it’s a drowsy time
No sun to warm my bones
RSD hurts, I can’t wear my skirts
Some days I wish that I had a clone
Giddy-up RSD get outta my life
So I can jingle around the clock
Don’t keep stabbing me with your fiery knife
That’s the RSD…
That’s the RSD…
That’s the RSD crock
___________________________________


12 DAYS OF CHRISTMAS - RSD STYLE

On the 1st day of Christmas my RSD gave me … a skin flare creeping up a limb

On the 2nd day of Christmas my RSD gave me … 2 swollen elbows, and a skin flare creeping up a limb

On the 3rd day of Christmas my RSD gave me … 3 panic attacks, 2 swollen elbows, and a skin flare creeping up a limb

On the 4th day of Christmas my RSD gave me … 4 trips to the ER, 3 panic attacks, 2 swollen elbows, and a skin flare creeping up a limb

On the 5th day of Christmas my RSD gave me … ETCH-A-SKETCH-BRAIN, 4 trips to the doc, 3 panic attacks, 2 swollen elbows, and a skin flare oooon a limb

On the 6th day of Christmas my RSD gave me … 6 nights of no sleep, what was I saying?, 4 trips to the doctor, 3 panic attacks, 2 swollen elbows, another skin flare on another limb

On the 7th day of Christmas my RSD gave me … 7 ketamine nerve blocks, 6 nights of <yawn>, ETCH-A-SKETCH-BRAIN, 4 trips to the doctor, 3 panic attacks, 2 swollen elbows, and a skin flare burning up my limbs

On the 8th day of Christmas my RSD gave me … 8 muscle spasms, 7 ketamine nerve blocks, 6 nights of no sleep, ETCH-A-<TCH TCH>, 4 trips to the ER, 3 I can‘t breathes, 2 puffy elbows, and a skin flare driving me insane

On the 9th day of Christmas my RSD gave me …  9 hours of screaming, 8 owie owie, 7 ketamine nerve blocks, 6 nights of no sleep, ETCH-A-SKETCH-BRAIN, 4 trips to the devil, 3 OMG‘s, can’t bend my 2 arms, and a skin flare fruh-uh-uhm hell

On the 10th day of Christmas my RSD gave me … 10 fingers throbbing,  AAAARRRRGGGGHHHH, 8 muscle spasms, 7 ah that‘s better, I need lots more coffee, ETCH-A-SKETCH-BRAIN, 4 trips to see satan, 3 more OMG‘s, still can’t bend my elbows, and a skin flare - crap!  I’m not done!!

On the 11th day of Christmas my RSD gave me … 11 stabs to my left foot, 10 fingers throbbing,  9 hours of GRRRRRR, 8 owie owie, now I‘m gonna puke, 6 <yawn> of <stretch>, ETCH-A-SKETCH-BRAIN, 4 trips to the devil, 3 panic attacks, 2 swollen elbows, and a skin flare someone call 9-1-1

On the 12th day of Christmas my RSD gave me … 12 stabs to my right foot, 11 stabs to my left foot, 10 fingers throbbing,  9 hours of screaming, 8 muscle spasms, 7 ketamine nerve blocks, 6 nights of no sleep, ETCH-A-SKETCH-BRAIN, 4 trips to the ER, 3 panic attacks, 2 swollen elbows, and a skin what?? … <whew> aahhhhh my meds kicked in
____________________________

Don't forget to tip your waitress and bartender ... Thank you and Good-Night

Ehpaynes!!! On ME!!!!

Well … I woke up this morning.  So I’ve got that going for me, which is nice.  But I woke up before Bertha and the news.  So I began my morning with a video ... and I have already watched it about 40 times so far!!  It’s from a couple weekends ago while at the Country Estate for the Munchkins’ 2nd birthday party.  My dad, “Ampa,” was helping my niece, “Da Gurl,” put on the airplane pajamajam pants of my nephew, “Little Dude.”  I was holding Little Dude as I recorded the hysterical scene, and even he was laughing!  Once the pants were finally on her correctly, she came running up to us saying, “Oh wow!!! … Ehpaynes!!! … On ME!!!”  I’m not entirely sure why I chose to watch this particular video.  I mean, I have a ton of vids to choose from after that weekend, but the universe must’ve aligned in such a way that it can only be described as "fate.”

Some days, after doing the Frankenstein Crawl to get out of bed, it’s hard to find something positive on which to hold until the coffee kicks in.  That l’il stinker was just the right kind of motivation for my morning.  While waiting for Bertha to beep, I had time to reflect on what she’s been through in her short life and how she is just as bubbly and cute and headstrong as they come.  You cannot tell by looking at her that there is anything wrong with her!!  (sound familiar??)

She and her twin brother were born one month premature on Dec. 8.  The Little Dude was able to come home before Christmas that year, all kinds of happy and healthy … and stinkin cute!!  But Da Gurl was born with a few … um … issues, for lack of a better word, and wasn’t able to come home until after the new year.  She was born with Dextrocardia (her heart is on the right side, not the left), PDA - Patent Ductus Arteriosus  (a flap in her heart that allowed blood to flow both ways), and almost her entire urological tract was discombobulated which led to a plethora of UTI’s, discomforts and antibiotics.

In April of this year she had her heart surgery to fix the PDA flap thingy and to create a membrane bridge between her heart and lungs.  My sister, the Mommie/Goddess/Kindergarten teacher, said that her only real concern about the Dextrocardia is when it’s time for Da Gurl to learn the Pledge of Allegiance, she’ll put her left hand up over her heart instead of her right.  (yeah, that’s right, optimism runs in my family.)  Fast forward to September … Da Gurl’s heart and lungs were functioning great!!  She’d gained weight, her hair had grown and it was time to fix her “girl parts and stuff.”  That surgery was also successful!!  So … For the last couple of months, she’s been bopping around with a colostomy bag while her insides adhere to the ways of the docs.  Her last surgery to get everything sewn up is a week from today.

So I had a crappy Sunday (except for the Bronco’s win … that was freakin COOL!!).  Big deal!!  I gave myself 24 hours to wallow and I awoke to a hopeful new day … and Da Gurl’s face and Little Dude’s giggles.

So if I find my day heading south again, I’ll pull up my video files and I’ll watch her vids again.  Happy, goofy, crazy, smiley, dorky and sweet … she’s my hero … my inspiration!!  If I can be a third of the inspiration to her that she has been to me, that is what will keep me fighting.  I have faith that she will be happy and healthy for the rest of her life … and I kinda feel like I owe it to her to be the same … or at least give the appearance of it!!

Ehpaynes!!!!  On ME!!!!!  <LMAO> You go Gurl!!!!

Teeing Up the Pity Pot

I call RSDers the Marines of the chronic pain world;  constantly adapting, improvising and overcoming their situations.  (thanks for the reference Clint Eastwood and the writers of  Heartbreak Ridge.)  My RSD has helped to teach me how to implement those Marine (movie) tactics into all of the other aspects of my life as well ... because life happens and there is absolutely nothing I can do about it!!!  However, there is something I can do about how I react to it.  Getting upset and angry doesn't help me, it only adds to my stress and pain level.  Allowing other people’s anger, fears and disappointment creep into my soul doesn't help me either (same reasons).  Keeping the faith and accommodating my own needs is what helps me.  I can ’want’ until the cows come home, but it all boils down to being content in knowing that my 'needs' are met.

Friday night was fun … WAY fun!!  I had both of my Angels, I had my Bosley, I had a few more great friends show up, I met a few new friends, and my coffee consumption and potentially subsequent lack of sleep was questioned by the waitress … twice!!   I call that a very successful evening!!

Friday night was only the beginning of the weekend that I had planned for myself.  But plans change.  Nobody is to blame for it ... not even RSD!!  Life just takes over and plans fly out the window.  It's no one's fault, it's just life; unpredictable, disappointing, tragic, spontaneous, surprising, uplifting, joyous and just plain weird!!  Sometimes life blesses us, but, at some point, life always disappoints us ... whether it's for the 1st time, the 2nd time, the 3rd time or the umpteenth time.  It is impossible to avoid being disappointed, so in order to avoid this particular feeling again, I need to AIO-morph my reactions.

 I am a 42 year old, fairly attractive woman with a debilitating nerve disease.  I am divorced and unattached, live alone, have no children, have no job or career, am poverty stricken, and I have an unreliable vehicle that isn’t even mine.  I planned for none of these things and yet I have adapted to them all.  It's my life, I have to in order to stay in it.  Regardless of my adapting to them, this is my pity-pot … my emotional crapper … the toilet of my tears.  These are the largest of my self-denigrating issues.  No matter what the catalyst is that gets me there, this ‘terlet’ is where I always end up.  There is no one to prevent it or to save me from it.  No one to cheer me on or up.  No one to offer me a hand or even any encouragement … so the responsibility falls to me ... and my faith.  What works for me is this … I will allow myself 24 hours to wallow and be sad before I kick the gosh darn thing out from under my own damn self and back into the stratosphere.  I often fantasize about being able to press the fast-forward button so that I can just skip all of the muck and get on to that peace-inspiring realization that my faith has seen me through life’s crappy shuffle once again.  (is that better, mom??)  Alas, there is no FF button in existence … that I know of, anyway.  So today, I will wallow and be sad about my life, I have given myself that permission.

Tony Robbins once said, “If you do what you’ve always done then you’ll get what you’ve always gotten.”  Not that I subscribe to the rantings of the uber-positive, big teethed people of the world,  but this one makes sense to me.  My ‘needs’ are met … My bills are paid.  There is food in fridge.  My dog loves me.  My family and friends love me … most of the time.  I have a roof over my head.  I have coffee.  I have what I 'need.'  Until I find that perfect combination of what works in order to get the happiness that I ‘want,’ it will be an ever-morphing, yet honest process.  My last real AIO-morph was a year ago ... I changed what I was doing in a specific area of my life.  Most of my new ways had started to work, but some of them didn't ... so,  it would appear that my changes have failed me.  I have no physical proof to the contrary.  Still not wanting to get what I’ve always gotten, I will not go back to my old ways, nor do I think I will continue with all of the current ones.  It’s time to morph ... to adapt, improvise and overcome … again.

Someday I will get my ‘wants’ and I will be able to radiate and share the happiness that they bring.  I have faith that I will find the combination to make them happen.  Until then, I have all that I ’need’ and that's good enough for now!!    




 

The Other Kind of Surfing

My good mood continues!!  WOOT!!  The high today is supposed to be in the mid-thirties ... and ... I.  Don't.  Care.  So I am going to take advantage of this all-natural pain killer and ride the wave as long as it lasts.  These are the days for which I now live.  I will suffer through my own misery just to get 1 or 2 of these days in a row ... especially this time of year.  I will not sit back and watch this wave crash, empty against the shore.

Seriously, I cannot even begin to describe this feeling.  It's cold outside.  There's snow and ice outside.  And today, I.  Don't.  Care.

Why??  Why can't I feel like this all of the time??  I know that there must always be balance ... no joy without pain (blah blah blah) but ... well ... It's like a vacation.  You're all excited to get there, your energy level is high, your pain level is low ... you're happy.  But it's a vacation.  It's temporary.  At some point, we must all come back to the reality and troubles of our day to day lives ... and that part usually sux!!  We enjoy the break from our own monotony.  This is why most RSDers will do whatever it takes to hold on to those feelings ... those vacations.  Because our monotony is horrific pain.

But see???  I kept the faith and this what happened!!  I held on when all I wanted to do was let go.  I griped and whined and complained and cried and screamed ... and laughed, and giggled, and stretched, and slept, and ooh ooh ooh I had a dream ... all of these forces came together so that i could have this one wave ... this one nearly perfect moment ... and if it turns into 2, I'll jump on and ride that wave as well!!  I know when my wave crashes and reality returns, I'm going to have a hefty price to pay ... but ... it is SO worth it to feel like this right now!!

Ride the waves.  Keep the faith.  I do it because I CAN!!!  ;-)

     

The Faces Are Coming!! The Faces Are Coming!!

My favorite part of the Christmas season … drum roll please … FACES!!!  It’s that time of year when all of my favorite faces start finding their way ‘home.’  Whether it’s for a weekend, a night, or a week, guests start checking in to The Chalet tomorrow!!

What makes this even better is that by focusing on the upcoming events of this weekend, I am able to fight through the pain and the cold.  Sure, I feel the discomfort of it all, but my great mood is overriding the pain.  How cool is that???  

There are absolutely no words to describe my excitement today!!  Even the Happy Butt Dance doesn’t seem to express my enthusiasm.  (I know, right??)  So I wrote a poem.  I hope this sums it all up for you.




‘Twas 3 weeks before Christmas, when all through The Chalet
Everything was stirring, cuz my friends are coming “YAY”!!
The stockings were hung from the hooks on a shelf
No one helped me, I did it myself.

The doggie was nestled in her mommie’s big chair
Dreaming and twitching and shedding a ton of hair.
And me in my pj’s with coffee in hand
Had just started fantasizing about palm trees and sand.

When out on the street there arose such a rattle
Beating the dog to the window??  Yep, it’s a battle.
The whining and yelping and howling and barking
And whomever was here had only started parking.

The wailing continued, you’d think her abused
The drapes and the blinds and the couch were all fused.
When what to my wondering eyes should appear,
But my CaliAngel, her rental and a bag full of gear.

I threw open the door and before I could blink
The dog bolted passed me and I spilled my drink.
Three minutes later they crossed the threshold
My body was frozen cuz it’s so gosh darn cold.

I thawed and we hugged and I ran to the phone
To tell masses that our girl had come home.
We texted ColoAngel and said “let’s begin”
She and Bosley showed up with a bottle of zin.

“Oh no no no,” I said with a start
“We must go now.  It’s time to depart.”
To b-dub-dub we went, the crew was all there
The tall one, the short one and the one with red hair.

We talked, we danced, we ate and we schmoozed
I had my coffee and they had their booze
The waitress came over and said (with some fear)
“You don’t have to go home, but you can’t stay here.”

Back to The Chalet I drove all the drunks
Singing Christmas carols, tis the season.  (I know, whoda thunk??)
So I say to you now with all the love in my heart
If I’m not here on Monday, check the hospital.  Check my chart.



Have a GREAT weekend y’all … I have faith that I will!!  (I’m gonna go clean my bathroom now.  Even that ugly chore can‘t squelch my good mood!!)

Creative Cussing

I have offended my mother.  I knew this would happen eventually, but the long and the short of it is … when I’m lonely and/or in pain ... I cuss.  And this recent bout of cold induced cabin fever has unleashed my tongue.  (I’m now on day 4 of not setting foot outside my door)  So after yesterday’s random bursts of Turrets, I’ve decided to rethink my verbiage … again.

When I’m coaching or tutoring or helping in a classroom, I am very careful with my words … ALL of my words.  When I’m out in public with my fam, I am mindful of my words.  When I am just relaxing with my fam, an occasional expletive might escape my lips, but I keep it under my breath (mom just needs to lose her  bionic hearing).  When I’m out with friends, I, again, try to be mindful of the people that are around me. (I would really hate to drop an F-bomb while sitting back to back with a 6 year old … but if we’re at a bar, beware of flying zings!!)  When I’m at home, I just don’t think about it at all.  And when my pain level is on the rise, I can make a sailor, a trucker and Quentin Tarantino blush.

But I digress.  Mom wins this battle, so I’m going back in to my bag of tricks for my creative cuss words and phrases.

Words like: fudge, shoot, darn, dang, drat, poop, schnikes, aaarrrggghhh, witch, wench, bench, ch-ch-ch-chia, sheeeeeeeeeeet, noogies, snicklefritz, frickin, friggin, flippin, brat, buttmunch,  tata’s, breastesses, and boobs (boobies and tits and titties are taboo … sorry Mom).

And phrases like: horse feathers, God bless America, shut the front door, cow patties, lord love a duck, oh for Pete’s sake, gosh darn it, what a crock, flock of seagulls, freakin A, mother puss buckets, son of a motherless goat, and piece/lump of poop.

Oi vey ... Time to get out the Cuss Jar and start to hold myself accountable again.  There is a time and place for everything, and those are few and far between for cuss words … in my world, anyway.  The good news is that, thanks to the cuss jar, I should be able to afford an island vacation by Christmas. <smh>

Yup … faith … I’ve still got it!!  (and btw ... the rusks are ah-mazing!!)

Baby, It’s F#@%in’ Cold Outside

I cannot cannot cannot cannot cannot cannot cannot cannot cannot take this cold anymore!!!!!!!!!!!  And it’s barely December.

Here, in my lovely corner of Colorado, the temperature has dropped to -9 F (it‘s 5:30 a.m.), and yesterday’s high was 27 F.  In all honesty, I cannot leave my house if the temp is below freezing (32 F).  Literally, I am a prisoner in my own home.  If it weren’t for my parents and a couple of good friends yesterday, I’d be cussin’ worse than a sailor today.  My dad went to the grocery store for me (not only was I still out of food, but to top it off, I was out of coffee!!), my mom brought over the pans, spices, mortar and pestle, and everything else I’ll need to start on the baking of the Swedish Christmas goodies (yes, I am the Swedish Chef in my fam), and some friends brought over a pack of cigs for me (don‘t judge).  This is why I can’t leave CO!!!!  Grrrrr … anyway …  

I call it ‘getting gut punched by the skank’ because, ultimately, that’s how it feels to me every time I open my front door during cold spells like this.  Keep in mind, this is not me being out in the cold, it is merely from opening my door … First, the gut punch <BOOM!!> right to my core, knocking the wind out of me ... (yeah, fer real).  Then comes the first rush of cold air and my body starts to shake and quake and convulse … other than that, my voluntary muscles become paralyzed.  Next come the ugly, cold-induced goosebumps … those evil, evil, evil, flare causing, mind blowing (and not in a good way) goosebumps.  My arms and legs are the first to pop.  (This is the infected razor burn feeling … it sucks!!)  Once I can regain control of my muscles I have to force myself to move so that I can close the door and back away.  At this point my infected razor burn-y skin has to rub against my clothes in order for me to move.  (hey!! YOU try moving without your clothes touching your body … it’s impossible!!  … unless you’re naked, but it’s toooooooo cold to be boppin’ around doin’ the full monty … PERIOD.)  Then comes the flare itself.  That “dump-a-can-of-gasoline-over-my-skin-and-strike-a-match-x20,” kind of feeling that causes me to crumble into a lump of poop.  Granted, I live by the code of “layers” but the physical weight of the layers can take their toll on my skin as well.

~~ Side note: I am 5’11”, 125 pounds … and I have been this way for the majority of the last 20 years.  But there is always some damn fool that has to make the comment about my needing to put some weight on to insulate my body.  (“Really??  I have never ever ever thought of doing that.  As a matter of fact, I don’t think that anyone has ever even suggested that to me before either.  I’ll tell ya what, as soon as I stop puking from the pain, I’ll eat non-stop for the rest of the day.  You’re a friggin genius!!!” … ya buttmunch)

Ok, back to business … Inside my house, I usually keep the thermostat set at 72 F (it‘s my happy place),  but the last couple of days, I’ve had to up the temp to between 76-78 F.  My gas and electric bills are gonna be from hell next month.  This is bullshit!!   (sorry Mom)

So … how in the sam-hill-heck am I supposed to keep the faith when it’s cold enough to freeze off vital female body parts, I'm in a hella ton of pain, and I’m almost completely cut-off from civilization???????????

I’ll try to start it with a nice compilation of Christmas music and Jimmy Buffet tunes and stalk my friends on FB.  Hopefully I can start talking myself into moving into the shower soon and then I’ll get out Grandma’s baking “guidelines” and let the smells remind me what it was like to hang out in the kitchen with that incredible woman.  (I say “guidelines” because she taught me how to cook/bake by the seat of my pants.  No recipe required!! … and that drives the rest of my recipe following family members up a wall … HAHAHAHAHA!! … tee hee)

 … this is me, keeping the faith … and trying to stay warm at the same time!!

A Perceiver's Ponderous Probes

Good and bad, I’m getting responses to my blog!!  YAY!!  Keep ‘em coming!!  ALL of ‘em!! I love love love it!!  (havefaith_91@hotmail.com)  There have been “thank you’s,” suggestions, questions, and yes, even a couple condemnations.  I thought I’d take this opportunity to address a not-so-happy email that I received after writing “Regrouping After a Bad Day.”  I kept the spelling and grammar as is, and gave this person an anonymous name … but I did stalk his hometown for you!! ;)

                            _________________________________________


Jen,

You have alot of nerve talking about religion.  Not everyone beliefs in god.  You keep talking about faith but what about CRPS/RSD people who don’t belief in your god or don’t know if they belief in any god?  I want to keep reading but I don’t want to keep reading about god.  

Some Dude in Austin

                            _________________________________________

Dear Some Dude,

First things first …  Jenn is spelled with two N’s, not one; “a lot” is two words, not 1; “beliefs” is a noun, “believe” is a verb.  …And thanks for the chuckle!!  

The other day when I touched on my spirituality, I told you that I believe in God, Jesus Christ, Angels and Archangels, The Great Spirit, The Four Winds, the power of the universe, Mother Earth and myself.   I do not recall telling you to believe in them as well or even telling you that what I believe is “right.”  It's just what I believe.

I need hope and strength in my life is this where I get them.  If you can gather strength and hope from a lamp post or a doorknob that’s great.  Do it.  More power to you.  … I cannot.

I often talk about having to keep my faith and hopes alive … and encouraging y’all to do the same.  I’m not saying that you should glom on to each and every one of my entities.  I’m not saying that my beliefs are the correct ones, or that there is a correct one.  I’m not saying that you should convert to any particular religion.  I’m not even advocating any particular religion or belief.  I am saying that this is what I believe; this is what works for me; and this is how I live my life and fight my RSD.  Here’s the deal, I have friends and family (RSDers and normies alike) who are Christian - Catholic, Protestant and Non-Denominational, Jewish, Agnostic, Atheist, Traditional, Druid, Pagan and Wicca.  I have love and respect for each and every one of them.  I do not push my beliefs onto any of them, but I do stand firm on what I believe.  I am open minded and always willing to listen to and discuss someone else’s point of view but it doesn’t mean that I’m going to agree with them 100% … or even 10%.

If you want to believe that that lamp post or doorknob can ease your pain riddled body or troubled mind, those are your beliefs. My faith is the sum of my beliefs.  It is what I feel in my heart and it is what radiates from my soul.  I am not me if I do not have my faith.  It is the one absolute that can never be taken from me.  It gives me courage and strength to keep moving and fighting.  Faith is not religion.  It is spirituality.

So, Some Dude, I will ask you now, what do you believe in??  What gives you strength and hope and courage to fight your RSD??

Very Truly Yours,
Jenn

Faith is not easy to have, get or maintain.  Faith is not for everybody.  For me, my faith is what will see me thru each day and it is what will tuck me in every night.  So this is me ... keeping the faith.




 

To Sleep, Perchance to Dream - Ay, There’s the Rub

(_\_) (_|_) (_/_) (_|_) (_\_) (_|_) (_/_) (_|_) (_\_) (_|_) <-- Happy Butt Dance … cuz I had a dream last night!!!!  WOO HOO!!!!  YAY ME!!!!  That only happens about 4 or 5 times a year for this crazy cripple, so when it does occur, I must … I must … I must par-taaaay!!!!!

One of the absolute roughest side effects of RSD, is insomnia.  By definition, insomnia means “prolonged and usually abnormal inability to get enough sleep.”  We are in too much pain to even fall asleep sometimes.  But when the sandman finally does grace us with his presence (and sleepy dust), it usually does not last for long.  Our hypersensitivity sees to that.  Turning over in bed, changing the way the sheets and blankets feel against our skin, changing the position of our pajamajams on our bodies is the equivalent of raking fire-hot fork tines up and down the skin.  Not to mention the pain that accompanies moving in general.  It is one of the most aggravating side effects that all RSDers have in common … and that’s saying something.  Even for non-RSDers, insomnia is a debilitating condition … Just remember, anything that negatively affects the “normies,” is amplified in an RSDer.  (I get kinda pissy when those normies try to tell me that “everyone has that problem” or “it’s not just you RSDers that are affected.”  I KNOW THAT!!! <smh> So what I tell them is, “multiply what you’re feeling by 10, and then we’ll talk.”  I am not out to discredit anyone's pain and suffering.  I am merely trying to point out what a ’normal’ life is like for an RSDer.  But if a normie insists on having a pissing contest with me, I’m gonna verbally kick their sorry asses straight into next week.  Unless you know, you don‘t know!!)

Ok, time to break it down … There are 2 types of sleep.  REM (rapid eye movement) and NREM (non-rapid eye movement).  NREM includes stages 1-4 while REM is solely stage 5.  The common misconception is that we sleep chronologically, from stages 1-5.  WRONG!!  Sleep begins at stage 1, progresses to 2, 3, and 4.  After 4, we go back down to 3 and then down to 2 again.  REM (stage 5) usually follows stage 2.  Stages 2 and 3 are repeated *before* REM begins for the 1st time.  Stages 2, 3, and 4 are repeated four or five times throughout the night (cycles).

The Five Stages of Sleep for everyone are:

1) Light Sleep - (lasts for 5-10 minutes) the transition period between wakefulness and sleep.  This when the ginormous and speedy alpha waves disappear from our brains and our attention to the outside world is cut off.
2) This is when patterns known as Sleep Spindles and K-Complexes appear in our brain waves - (lasts for approx. 20 minutes)  This stage can only be measured in the form of EEG (Electroencephalograms).  This is also where our restless sleep occurs.
3) Slow, large brain waves known as Delta Waves begin to emerge and the neuron dance of sleep begins.  Our neurons are ‘at rest’ but fire rhythmically and methodically.  This is the transitional period between light sleep and deep sleep.  (this is also where the night sweats creep in ... just so ya know)
4) Delta Sleep - This is the deepest stage of sleep for us humans, when we are most resistant to waking.  (3 and 4 last approx. 30 minutes) This deep sleep is courtesy of very slow brain waves.  (this is where bedwetting and sleepwalking happen)
5) REM Sleep - Rapid Eye Movement.  This is where the dreaming occurs.  Our respiration rate and brain activities increase.  It is also referred to as “paradoxical sleep”.  Our brains and other body systems become more active while our muscles become more relaxed.  We dream because of increased brain activity, but this also paralyzes our voluntary muscles.  (REM sleep last from 2-30 minutes.)

So then this is what my brain says the averages are …
Normies- 1, 2, 3, 4, 3, 2, 5, 1, 2, 3, 4, 3, 2, 3, 5, 3, 2, 5, 3, 2, 1, awake
RSDers- awake, 1, 2, 3, awake, 1, 2, awake, 1, 2, awake, give up, make coffee

Back to the neuron thing for a minute … remember a few blogs ago when I told you about the pain killers blocking the receptors and causing the need to grow more so that messages can continue to travel … then there are more receptors to fill with the next dose of pk’s … and then more of them need to grow to receive the messages … and so on and so on … Now, go re-read about Stage 3.  Those neurons may be doing the ‘at rest dance’ but that is still a hella lotta dancin' going on in our RSD brains.

Do you understand now why I am so excited about dreaming???  Bad thing is tho, with etch-a-sketch brain, I can’t hang on to the dream for long … unless I write it down … guess what I’m gonna go do now!!

Keep the faith!!  Dreams happen!!

Ready ... Set ... Go-Bag

Before my RSD spread to full-body, I was a highly spontaneous person.  I could pick up and go whenever I wanted.  I was still able to work so I still had money and I could go just about anywhere for a quick weekend getaway.  Road trips were not yet taboo and I had fairly reliable vehicles at my disposal.  I could throw clothes in a bag and go … and not really worry whether or not I had the appropriate amount of layers.  And then the beast spread … and spread some more.  I miss those better days.  

Before I knew it I was confined to my bed.  On the rare occasions when I could travel, I would have to fly to my destination heavily medicated and padded against turbulence, other people, the pressure changes in the cabin, and the beverage cart.  I finally quit traveling altogether … unless it was in direct relation to my sister and brother.

But remember, it’s not about what we can’t do anymore.  It’s all about what we are able to do now.  I, for instance, wanted to take back some of my spontaneity and independence, but as an RSDer, that is next to impossible.

So I did a little compromising with myself.  My independent side had to give in, and it finally agreed that traveling ‘alone’ was just dumb.  I could either travel with someone who was familiar with me and my RSD or there needed to be someone at my destination who was prepared to handle me at my worst when I arrived.  (Not to say that I’m always a wreck upon arrival, but some form of TLC is usually necessary.)

For my spontaneous side, I created a new trick that allows me to not stress and just go!!!  On the floor of my coat closet is my “go bag.”  It is a black, white and yellow Vera Bradley tote bag that contains a sling, an ankle brace, an Active Ankle, a wrist brace, a wrist pillow, 2 Ace bandages, a microwavable neck wrap, a pill box (contents to be named in a minute), 1 pair of leggings, fleece sweatpants, 1 tank top, 1 pair of soft and fuzzy socks, 1 long-sleeved modal/silk top, a blanket, and a sweatshirt.  In my pill box are: 10 nerve pills (holistic oils), 6 Neurontin, 4 Indomethacin, 2 Excedrin, 6 Advil, 6 Tylenol, 2 Midol, 2 Immodium, 2 Zantac, a small container of holistic oil analgesic, Ketamine nasal spray (unopened - cuz I hate the shit.  It’s emergency-only stuff), a rose crystal,  2 packets of Via; and a sleeve of Nicorette gum.  Everything I could possibly need in order to stay present in my life.

I put it in the car with for: road trips; hollerday day trips to a relative’s house;  parties; out-of-town mall excursions with my sister, mom and the munchkins; slumber parties; mountain drives; meetings; sporting events; … any events actually.  When I don’t have to use it, it goes right back in the closet as soon as I get home.  If I do have to use it, I replace what was used and put it back.  It helps having numerous pairs of leggings, tanks, socks, sweats, etc.  Just swap ‘em out and do laundry.  (ooh … that reminds me … I need to get more Via) … But I cannot begin to tell you what a comfort it is to have these things … especially when you least think you’ll need them

Ok RSDers, how much time and energy do you spend packing up your “necessities” before you leave the house??  How many times have you been out with family and/or friends and had to back out of an adventure or leave early because you weren’t prepared??  How many times have been away from home, for whatever reason, and were hit with a flare that you could do nothing about??   Stop!!!  It’s silly!!!  We need to live!!!  Allow yourself concessions, make it as easy on yourself as possible and before you know it, you’re grabbing your own go-bag and scootin' out the door!!

This is me, keeping the faith!!

Anywhere But Here

Giggitygiggitygiggitygiggitygiggity <clench teeth, big breath> giggitygiggitygiggitygiggitygiggity

I shuttered out of bed this morning; did the Frankenstein Crawl to Bertha; poured myself a hot, steamy, thick cup of coffee; and pried my eyes open.  I let Kiva out (felt a very very chilly breeze), turned on the news, turned off my porch light and opened my front blinds to  … SNOW!!  Mother Nature, the skank, had hand delivered that cold crap again.  She even gift wrapped it in a sparkling, glistening, pretty, white package.  The snow is falling, the temp is dropping, my bones are rattling, my nerves are twinging (another jenn-ism)… and I don’t like it.

When I first contracted RSD it was confined to my right arm and stayed there for almost five years.  I got complacent, it snowed, melted, froze and, while not paying attention, I just had to slip and fall on the ice on my way in to work.  <WHAM>  My RSD spread across my back to my left arm and hand.  Four years later, Princess Grace (that's me) did it again and <KACHUNK> the RSD spread down into my hips.  I.  Do.  Not.  Like.  Snow.  And.  Ice.  Period.  I will no longer leave my house solo when there is snow and ice on the ground.  Even in the age of cell phones, I am not comfortable walking on the crap without an arm of support to assist me.  I choose to not elevate my anxiety by even contemplating venturing out of doors for the next couple of days.

I do not want to play this game again.  I do not want to hibernate in my hermetically sealed bubble.  I do not want to be cut off from everyone until the snow melts.  I do not want to have to turn my thermostat up.  I do not want to have to block and barricade the doggie door.  I do not want to have to dress in heavy layers today.  And I absolutely, positively, without a doubt do not want to feel the cold.  The weather lady just said that our temp will drop into the low teens by this evening.  I don’t like the weather lady either.  (just kidding, Becky!  Love you!)

While looking across this beautiful blanket of white this morning, I can’t help but be inspired to be … anywhere but here.  This is when I’m grateful for my vivid imagination, good music, and great friends that can afford to travel and send me pictures of  beaches and boats and deserts and palm trees and oceans.  I keep telling myself that someday I’ll be able to take my own beachy sunset or sunrise pics and make my own happy and relaxing memories … but until I can afford that day, I will continue to live vicariously through them from within my bubble.

What if snow were actually coconut flavored Pixie Stix dust?? <-----  random thought!!

So why do I continue to live in Colorado??  The answer is simple … my support network is here.  I cannot live my life without help and here, help is a phone call away (it’s just a matter of me asking for it).  I would move to a warmer climate if I could afford it.  (In.  A.  Heartbeat.)  But I can’t go somewhere where I don’t feel safe and where I don’t know anyone that I would trust with my life.  Nor can I go anywhere where the cost of living is any higher than it is here.  I was on a waiting list for 2 years to get Section 8 housing help with my rent.  I can’t afford to be on another waiting list, or worse, move somewhere that doesn’t offer assistance at all.  My parents live less than 5 minutes away, my brother too.  Bosley and my ColoAngel live within 15 minutes of my house.  The hospital where my wonderful anesthesiologist is based is 3 minutes away.  My pseudo-niece and her bf live across town but they have made it to my aid in less than 10 minutes.  One of my “original girls” (I coached her in h.s. volleyball way back in the 90’s) is now a chiropractor here in town and she is usually available to help when I need it too.  How can I leave this wonderful network of amazing people??  This is not to say that won’t ever, but it does mean that I won’t right now.  Not until I have a support network in place on an island closer to the equator, anyway.

So I will turn on some Jimmy Buffet, open the file on my computer that contains everyone else’s pictures, refill my coffee, hit the slide show button and dream on being in California and Arizona; Aruba, Texas, Florida, and the Virgin Islands; Hawaii and Jamaica; and Romania and Sweden (in the summer, of course).

I already feel warmer!!!  This is me ... keeping the faith!!

Regrouping After a Bad Day

Today is supposed to be Friendsday Wednesday but on this, the last day of Nerve-ember … aka RSD Awareness Month,  I feel the need to be my own friend today … my own reality check, if you will.  I find myself asking myself if I did all that I could do to raise awareness this month.  Did I inform at least 3 people of the existence of RSD??  Did I give the tiniest morsel of hope to another RSDer??  Did I offer any kind of comfort or counsel to an RSD caregiver??  Did I do my due diligence, as an RSDer, to remind people that there is faith to be had even on the darkest of days??  Did I validate the any of the trials of another RSDer?? I.  Don’t.  Know.

I DO know that I am more aware.  Everyday is a learning experience for me … good, bad or indifferent.  Everyday is an adventure even it’s not the fun adventures about which I can only fantasize (warm, sunny beaches; palm trees; boats; etc.).  Everyday I receive unconditional love from Kiva … and Bertha … and my family.  Everyday I set at least 1 attainable goal for myself so that I don’t feel like such a failure.  I am far from perfect in dealing with this beast, yesterday’s blog is proof of that, but I put one proverbial foot in front of the other and keep trudging.

Yesterday was a bad pain day, but I fell asleep last night and awoke this morning to the odiferous yummifications of coffee brewing and forehead kisses from my fave canine.  It’s a new day with new hope, new goals and fresh coffee.  It is nowhere near as painful to put my feet on the ground as it was yesterday, but it does still hurt.  The ugly shiny purple color in my feet and fingers is fading back to it’s normal fleshy-pink/tan, the swelling has gone down some and I can sit upright at my kitchen table this morning.  These are the hopes onto which I will cling for the rest of the day.

I cannot prevent bad pain days.  Hell, I can’t even fight bad pain days.  So I quit trying to fight them and began accepting them.  I allow myself to be in pain and I also give myself permission to cry, scream, rant and be sad … for a day.  I don’t have the luxury of being able to choose or plan for my own “day,” so I need to be willing to listen to my RSD and ready to work from within my own bag of tricks.

What I need to remember most of all is that no one is to blame for my RSD.  No one caused it.  The disease itself was in existence long before I was.  I am a firm believer in God, Jesus, Angels and Archangels, The Great Spirit, The Four Winds, the power of the universe, Mother Earth and ME!!  As there is no known medical cure for this beast yet, I hafta hafta hafta turn to my spirituality for hope.  And I hafta hafta hafta keep the faith that my beliefs and my entities will guide and watch over me.  If I start losing my faith, how I can I ever expect to share hope with others whose lives are affected by this horror??  I pray to God that a cure will be found in my lifetime.  I ask Jesus to guide my steps and bless me with the Angels.  I ask The Great Spirit for the assistance of The Old Ones to aide my strength in this battle.  I ask The Four Winds to protect me from my enemies.  I ask the universe and Mother Earth to provide me with natural and holistic methods of  healing.  Before I begin my sequential “asking marathon,” I begin by offering them my gratitude for all things received.  I, personally, think that it’s selfish to ask for more without thanking the Powers That Be for what’s already been given.  Then I ask.  When all is said and done, I ask the PTB what I can do for them.  Life is a total series of gives and takes and if I’m asking them to give to me, I want to fully prepared for what I’ll give them in return.

Good pain days and bad pain days will come and go.  I will enjoy the good days with every fiber of my being and I will accept the bad days as they come, albeit begrudgingly.  The only way we will ever survive the beast of RSD is if we keep the faith and keep our hopes alive.  Keep fighting, keep spreading the awareness, not just during Nerve-ember, but every day of every month of every year!!

Coach Crankypants Rears Her Ugly Head

I had a gazillion windows open on my laptop yesterday for Cyber Monday.  Four windows were different articles that I’ve been working on, my email inbox, Facebook (of course), Gap, Amazon, Barnes and Nobel, Target, Men’s Warehouse, Vera Bradley, JC Penney’s, Kohl’s, Walgreen’s, Pinterest, Fanatics, College Football Store, Crate and Barrel, Bath and Bodyworks, Gymboree, Sesame Street, and Ancestry.  Plus I was tracking my eBay “watch list” from my iPhone.  … I did it all from bed and I still have a little moolah left on my credit card!!!

Why am I in bed??  HA!!  It’s nowhere NEAR as fun as it sounds, trust me.  But I knew, in a general fashion, that I was going to be in some nasty pain after my crazy weekend.  Now, let me define “crazy weekend” for you … We returned from my niece and nephew’s ‘birthday party weekend’ late Sunday evening.  For those of you trying to do the math, let me break this down for you.  It’s a 19 hour drive, round trip.  We left at 6:30 a.m. on Friday morning (myself, my 6’4” brother, my 6’3” father, and my 5’6” mother … that’s alotta need for alotta leg room in a packed-to-the-hilt-with-presents-and-bags SUV, driving thru a heavy pressure front and insane winds!!) … and we got home a little after 7 on Sunday night. 60.5 hours total. Subtract the 19 hours of travel time and that equals 41.5 hours out of the car.  Now … factor in that the Munchkins went to bed at 7:30 p.m. (both nights) and were up at 6:30 a.m. (both mornings), and I can’t forget Saturday's 3 hour nap … so now we’re at 41.5 minus 25 hours of Munchkin sleep, equals 16.5 hours.  Then there was the 3.5 hours of birthday party where I was on my feet (in heels) taking pictures and video.  So to sum up … I GOT 13 HOURS OF FACE TIME!!!  Can I get a WOOT WOOT?!?!?!?!
(_\_) (_l_) (_/_) (_l_) … (that’s my happy butt dance!!!)

I would walk through fire, tornados, hurricanes, volcanic eruptions, earthquakes, terrorist attacks … ANYTHING for my niece and nephew!!  It’s a conscious decision that I made with my head and my heart at the exact moment when my sister told me that she was pregnant.  I knew that I would have to change my life in order to be present in theirs … and I have!!  And I think I’ve done a damn good job of it too!!  I am more than willing to sacrifice whatever is necessary (physically, mentally, emotionally) for those 2 little scrumptious nuggets.  I was mentally prepared for the amount of pain I would be in upon my return home.  At the chalet, I had everything physically ready that I needed to fight the flares as soon as we got back.  I didn’t have a chance to go to the store before we left (silly stores closing on Thanksgiving), but these people are my team, we’d fix it when we got back.  I had to be with the twins and my family … I was as prepared as I could be.

We got home … aaaaaaaaaaand then my messed up, selfish, mental brain started getting in my way.  I call that part of my personality, Coach Crankypants.

RSD doesn’t care what decisions I’ve made with my life and, even after 20+ years, it still tries to take control of my life with a modicum of success.  My hope for the future is that my entire immediate family realizes what I actually go thru, inside and out, for me to even try take back that control ... without them having to feel it themselves.  Their words say that they do, but their actions, quite often, speak volumes to the contrary … Good grief, I can’t tell you how much I wish that I didn't feel this way.  My family is amazing and wonderful and caring and giving and loving and I wouldn’t trade a single one of them for anything!!!  But as I sit here, still feeling the repercussions of our trip, I question their conscious awareness of my RSD.

Now, is this actually true??  Is my family trying to ignore my RSD in the hopes that, once we‘re home, it will just go away??  I honestly do not know, I really don‘t think so, but these are the thoughts that go through my mind.  I try and try and try to suppress these thoughts, but they’re like ticks that burrow into my brain.  I have to be fully aware of what I do and how I do it 100% of the time.  It’s when I’m not paying attention that I get into trouble … a LOT of trouble.  This is why I am a conscious battle-picker.  I KNOW that they love me, I KNOW that they know the initials RSD, I KNOW that they do whatever they can for me whenever they can, and I KNOW that the thought of a family member in pain causes extreme concern and tears to the remaining members.  I KNOW that I’m being selfish by feeling this way, but I am the only one who looks out for me 24/7, and <fuck!!>  I’m tired of doing it!!  I want to turn my back on it and walk away, but I can’t.  I'm tired of always having to rely on someone to do something for me!!  <this is Verbal Regurgitation, by the way> My biggest ally this last weekend was my brother.  He was awesome!!  But he was in a hella lotta pain himself having just had oral surgery.  I tried to not burden him with my shit.  I really did … but that stinker kept an eye on me, God bless him!!

When I got home, I remembered that Mother Hubbard’s problem had nuthin’ on mine.  “Bare” does not even begin to describe my situation.  And although I still have a wee bit o’ money left after Cyber Monday, I am still unable to get to the store.  I had to order Domino’s last night for dinner and it looks like leftovers are on the menu for today.  To top it all off I have 5 loads of laundry to do; I need to get my Christmas decorations out and up; I need to change the belt on my vacuum; I need to clean my house.  … And it hurts to have my feet touch ANYTHING right now, most of all the floor.  ALL of these mundane-ish things that people take for granted.  THESE are the days when I need my team to back me up.  And these are the days when I feel most defeated and lonely because I can’t even take care of my own damn self. <enter Coach Crankypants>  And I'm too damn stubborn to swallow my pride and remind anybody!!

I hate hate HATE myself for feeling this way.  There is absolutely no excuse for it.  They all have their own lives to lead without me demanding any more of their time.  I keep hoping against hope that each time will be different and I won’t feel like this … And each time it does get a little better, but I've still got a long way to go.  I’ll be fine and happy and chipper and positive and optimistic as soon as I’m back on my feet (literally) and can take care of myself again ... in another day or so.  Until then, there’s Verbal Regurgitation, Domino's, Jimmy John's, Netflix, Hulu and Facebook.

Keep the faith, people … I do!!

Getting Face Time

9.5 hours in the car ... Wind, SO not my friend ... But spending the weekend with my niece and nephew is more than worth the agony. Busy weekend so probably won't be able to blog

But I don't care ... I GET FACE TIME!!!
(insert happy aunt dance here)

Giving Thanks ... to Mr Zuckerburg

On this day of Thanksgiving, I think it’s only appropriate that I express my eternal gratitude for … Facebook.  Yes, that social media from hell that tells me everything I never wanted to know about the people who were deluded enough to ‘friend’ me in the first place. (that was my veiled attempt at channeling Maxine.  How’d I do??)  Seriously though, I love Facebook.  It’s where I was reunited, after 23 years, with the 2 friends from high school that have since become my Angels; it’s where I can see what my cousins are up to in their coast to coast lives (and I don‘t have to wait for the Christmas card version); it’s how I know when my niece or nephew has insomnia (that‘s when my sister goes thru and ‘likes‘ my posts and organizes my boards on Pinterest); it’s how I’ve connected with other RSDers; it’s where I post this blog (feel free to ‘share‘ it!); it’s my venting platform; and … it’s where my God-sister found me.

Let me tell you why this last one is so special to me … Almost 43 years ago, a child was born.  True story.  I was there.  Being born at attention (that’s my code for Army brat), means that people will come and go from my life and there‘s nothing I can do about it.  This was the way it was with my Godparents.  My dad was stationed at Ft. Sill in Oklahoma when I was born in January of 1969.  He and my mom chose a fellow soldier and his wife to be my Godparents.   Shortly after that my dad received a Captain’s post in Korea for 18 months and my mom and I headed to Colorado to be closer to her side of the family.  (We are a tight friggin unit when it comes to support … this is the Swede side, btw.)

Anyway, my Godparents had a son and a couple years after I was born, they had a daughter.  I had never met them (that I remember anyway).  My Godparents eventually ended up back on the east coast and after my dad returned from Korea, we moved to Kansas (crossing the border into familial Cherokee territory).  Two families lives held together through a bond created by God, yet forever separated.  … Or so I thought …

Fast forward to the spring of 2011.  I had commented on the Facebook post of an RSD mom (probably spewing sarcasm re: RSD … hey, it’s what I do.) and a little while later I received a private message from some blonde chick.  She asked if my dad was so-and-so and said that she recognized my name and thought maybe, just maybe, I was her God-sister.  I looked at her name and knew in an instant that she was right.  I froze.  I thawed. I fist punched the air.  I squealed.  I wrote back and asked her how she found me.  Her reply was like a stab to my heart.  She was in a few RSD parent support groups with the mom on whose wall I had commented.  Her oldest daughter, now 13, has RSD.

We briefly swapped stories and then <nnneeeeerrrrruuuuuuuummmm> we were on our phones with our parents.  “Guess what guess what guess whaaaaaaat!?!?!”  We might as well have been 12 year old girls that just got front row tickets to see Justin Beiber.

By the end of the day, I was Facebook friends with her, my Godmother, Godfather and God-brother.  Thank you, Facebook (and Mr. Z), for filling a 42+ year old hole in my heart!!  But DAMMIT!!  Why did it have to be because of the beast???  I almost feel like thanking RSD too … but that thought makes me throw up a little in my mouth.

I have SO much to be thankful for this year … Facebook, coffee, an incredible and amazing family, my dog, Bertha, my niece’s successful surgeries, the coolest friends on the planet, being reunited with my Godfamily, lessons learned (albeit some of them painful), my nerve pills, finding out I can play volleyball again (with a protective team!!), my anesthesiologist,  my electric blanket, flare clothes, karma, coffee (yes, again), the roof over my head, the mice under my feet (maybe if I appreciate them, they’ll leave on their own), laughter, my boy-slaves and man-slaves that come over and do the yard work that I cannot, my Vera Bradley collection, I-70, Facebook, Netflix, Hulu, fabric softener, Ziggi’s, and a vivid imagination … and that’s just what I can think of at this moment.

What are YOU thankful for today??


HAPPY THANKSGIVING … <gobble gobble>

Inspiration in a Small, Pink Package

Raspberry Shortcake.  That was how I was first introduced to this spunky little mama.  We met on Facebook a couple of years ago via a few different RSD support pages and that was the name she was using.  We have not met face to face … yet … but we have bonded over some cah-ray-zee similarities.  World, meet Kristen Lewis.  Wife, mother of 3, home-schooling mom, make-up and nail artiste, DD coffee addict, history junkie, drama hater, and she is another “20 plus-er” (has had RSD for over 20 years.).  Standing at a formidable 4’11” with bright pink hair, she is a force to be reckoned with and not to be underestimated.  She’ll kick your ass, dammit!!

Now are you ready for this??  She never had an initial injury to spawn her RSD!!  She went to her 6th grade classroom one sunny, Pennsylvania morning in April 1989 as if all was right with the world.  Her knee was a little sore, but this urchin was a baseball playing tomboy, therefore oblivious to “little pains”.  By the time she had gone home for lunch that day, her knee had grown to 3 times it’s normal size.  Kristen went back to school having been told by her mother to, basically, shake it off.  Three days later, as they were in the car on their way to the Emergency Room, they rethought that assessment.

It wasn’t until June of 1990 that she got her RSD diagnosis.  (Yes, those were the days when it was still diagnosed as RSD and not CRPS.)  She saw an orthopedic surgeon who ran all of the excruciatingly painful process-of-elimination tests, MRI’s, CAT Scans, x-rays, and thermal scans before her diagnosis came … courtesy of a new-to-her doc at Children’s Hospital of Philadelphia (CHOP).   He reviewed all of her test results and <BOOM> ten minutes later he said those three mind-blowing letters … “RSD“.

To hell with baseball at this point, this 13 year old kid had been on crutches for the last 13 months and was wondering if she’d ever be able to walk again!!  She, for obvious reasons, was confused.  How had this happened?  She was in the prime of her kid-dom, what was going to happen to her now?

Within 72 hours, she was admitted into Children’s Seahorse House for a 5 week series of nerve blocks, intense physical therapy sessions and behavioral therapy sessions as well.  Her docs found the nerve blocks to be beneficial to pain relief and very helpful when increasing her PT to 6-9 hours per day.   Over the course of the next three years, Kristen spent a total of 12 months at CSH undergoing 40-50 nerve blocks.  The doctor was reluctant to give her any pain killers and told her that she‘d have to learn to live with it.  (I’m thinkin’ that her age was a huge factor in that decision.)

After all of this suffering and hard work, she had finally been diagnosed as 98% pain free.  The word they used was “remission” ... but they said it would probably not last forever.

At 16, Kristen lost her mother.  Shortly after this devastating and tragic event, she met her, now, husband, Raheem.  Two years later they gave birth to a baby girl and year after that, their litter grew to four with the birth of their 2nd daughter.  Still she was in “remission“.  I asked her how she explained RSD to her husband.  She told me that she didn’t.  She was of the mind that if she just forgot about it, it might never come back.  She returned to school, landed an ah-mazing job and 6 months into her newfound career, she was awakened in the middle of the night by a blinding cramp.  Remission was officially over.  It was time to tell the hubbs!!

“He did not understand,” she said.  “Despite my docs even telling him, he took it personally when I didn’t want to be touched.  It’s been extremely hard.”

At 27, Kristen gave birth to a bouncing baby boy.  This time the pregnancy affected her pain and vice versa.  She was informed about what affects her medications could potentially have on the baby so she weaned off of all meds for the last 6 weeks of being a human incubator.  When the little man was finally ready to make his debut, Kristen was given an epidural.  Aaahhhhhhh … It had kept her pain manageable through childbirth and she was able to care for him right away.


She says that raising children and having RSD has been tough.  The kids know that Mom needs extra time these days; extra reminders of dates, events and projects that are due.  They need to help out a lot more around the house, but they also know that Mom will be there for them always.  Case in point:  1 daughter is a Jr ROTC and 1 daughter is active in dance.  Kristin doesn’t miss an event.   She says, “They are truly supportive even as teens.  They try not to give me too much trouble.”  She also recently started home-schooling 1 daughter and their son … and they are already seeing a huge grade-spurt!  (Kudos to the Mom!)

Kristen has carried with her everything she ever learned at CSH, which she now calls “RSD Bootcamp”.  It was absolutely one of the hardest things that she has ever had to endure, but she has learned how to fight and live her life as best as she can despite the pain.  My fave quote of hers is “Keeping moving keeps me moving.”  I love that!  She uses in-home physical therapies daily and comes up with some kick-ass nail designs to distract herself from the pain.

Her final pearl of wisdom for you is this, “After more than 20 years, I’ve learned that it’s not about what I can’t do, like when I was young.  It’s about what I can do now.”  She a genius!!  A friggin genius!!  (I’m gonna hafta try that one!!)


Do you have any RSD questions for Kristen … or myself?   Leave a message in the comments below, or email them to me at havefaith_91@hotmail.com.

Hollerday Stress Busters

Yes, I call this time of year the Hollerday Season.  That vicious circle of stress = pain = more stress = more pain = … you get the picture, anyway, for years I would end this season curled up in a blob, in my bed, hollering at the top of my lungs for the pain to stop.  No more!!  I have a game plan!!  (heh heh)

Stress is one of an RSDers key triggers to a flare and trying to keep up with the hustle and bustle of the Hollerday season adds a certain little tiny extra punch to the burning, stabbing, sparking, sweating, and  swelling that we’ve already got going on.  I have devised a plan to avoid as much Hollerday stress as possible.  It’s been years in the making and I’m actually kinda excited to put the whole thing into action this year … and find out what I’m gonna hafta add to it for next year.  It’s an ever-morphing process.

1) Repeat these syllables … Let.  It.  Go.  As we get older, everybody seems to vie for control of the family during the Hollerdays.  Despite our best made me-do, honey-do and deary-do lists, so as not to forget a detail, we get so distracted by desperately trying to make everything perfect, that we neglect our bodies.  (Dammit, I forgot to schedule that friggin flare!!  It’s not on my list, therefore it cannot happen … Let.  It.  Gooooooo.)  Ever heard the saying, “too many chiefs and not enough Indians”??  Yeah, that is most families that I know, and mine is no different.  As the single, crippled, childless member of my family, I have made a conscious decision to be an Indian again this year.  I am not giving up on the things I want to do with my family, but I am picking my battles and rolling with the punches.  My family knows my limitations and if it is not within my repertoire to do or fix, then someone else knows that they need to do it, or that we need to just accept it.  And then there’s … What??  You burned the turkey?? <deep breath … in through the nose, out through the mouth>  Let.  It.  Goooooo.  You can’t fix it now, can you??  Take pictures of it, dress it up in your uncle’s hat and scarf and roast your uncle (you could start by saying how fowl he is … and go from there), hit up the Mc Donald’s drive thru and have a picnic on the dining room floor next to your perfectly set table.  No one will ever forget moments like that, might as well make the memories fun.

2)  Look for the Little smiles … Have you ever looked at a child’s face when they experience the wonder of candles and food??  There is nothing quite like those Little smiles to erase woeful moments.  Waiting in line at the grocery store behind a mom with a full cart, a pocket full of coupons and two small children??  Look at those young faces.  Remember, if you can, what it was like to be a child at this time of year.  Remember all of the raised eyebrows and wide eyed moments as you discovered something “Hollerday-ish” for the first time.  Keep fond memories close, daydream a little and before you know it, the cashier will say, “How are you today, ma’am?”  (ugh … ok Jennifer Lynn … Let.  It.  Gooooooo.)

3) Pre-medicate … There is no such thing as “just a cold” to an RSDer.  Our immune systems are already compromised with fighting the daily pain.  I know that with me, a cold becomes bronchitis in less than 2 days and if not managed immediately (which is not always possible), it becomes pneumonia.  I have worked with my GP so that I always have up to date antibiotics, cough pearls and inhalers in my medicine cabinet along with Vitamin C and Echinacea.  2 days before I know I will be seeing my niece and nephew, I start on the antibiotics, vitamins and inhalers.  Young children are notorious for sharing germs … and I want all of the germs that those 2 munchkins have to offer, but I don’t want to get sick.  Practice prevention, talk to your doc, and pre-medicate.  It’s SO much cheaper … and less time consuming in the end!

4)  This year I will not be participating in Black Friday.  There are a few reasons for this.  First and foremost is that I’m not up to playing the role of human pinball only to have to stand in line, on my stabbing, swelling feet, for an hour just so I can save $5.  Second is that I will be in a car traveling home from Kansas City.  And C, I really don’t wanna be a human pinball.  I don’t have the body mass to compete with any of these people (unless they‘re a malnourished 10 year old).  I choose to save my body for the Hollerdays themselves.  Christmas parties, family gatherings, church services, meeting friends for warm drinks and football … Those are the battles I have picked for myself.  Instead, I will participate in Cyber Monday … where the only bruises are on my fingertips and credit card.

ENJOY YOUR HOLLERDAYS!!!