Blame Game

For 2 weeks I thought I was successfully battling allergies and sinus congestion.  But ... um ... I failed.  Yes, I am sick, and not just in the brain.  I tried to blame the Munchkins, but seriously, who wants to willing hold those adorable 3 year old faces accountable for my weakened immune system?  Not me!!  I tried to blame the volleyball girls, but I honestly haven't been around them consistently enough for them to have caused this. I tried to blame Houdini for bringing his 5th graders germs into my house, but that guy needs a break, so I'll find something else for which to blame him when the timing is better ... it's what sister's do for their little brothers.  I've also tried blaming the Fun Folk, my Porno (hat) Dealer, my dog, the Broncos losing, and my ColoAngel.  The sad but true fact is that I am to blame this time.  It is my fault, and mine alone.  I am sick, and I have no one to beat up but myself ... <sigh> ... dammit!!

A couple of weeks ago I noticed a draft emanating from the window above my bed ... and I did nothing about it except turn my electric mattress pad up to 7 from it's usual nighttime standard of 4.  It did not occur to me, at the time, that that slight of a draft would be a problem.  Well played, Karma.  Well played.

So now that the window is sealed up with towels and plastic shrink-wrap stuff, I sit here, coughing ... and coughing ... and blowing my nose ... and coughing.  The thing about my coughs this time are that every time I have a fit, my sweat glands open up like Niagara Falls, I see a parade of Tweety Birds behind my eyelids, and my tender gag reflex (thanks to all of the nausea lately) is bringing up the stuff that is supposed to be making me better ... and my coffee!!  Thanks to my fever breaking last night, I'm washing all of my bedding today and I have a feeling that's going to use up my spoon supply for the day.  The trash that needs to go out, the dishes that are multiplying like rabbits in my sink (mostly cups and glasses, but I really am trying to eat too), and the dog hair that is coating my couch and carpets will just have to wait another day ... or 2.  I'm not complaining, I'm just saying!!  It's my fault, I'll begrudgingly get to it when I have the energy/spoons.

As for the rest of the day, I will continue to sip on my orange juice and hot tea, suck on Hall's Defense lozenges, take a chance on downing some cough pearls and a nausea pill, hopefully be able to stomach some of the homemade soup that Mom brought over yesterday, increase my K-Spray pumpage to 2 pumps every hour (as per the doc's instructions ... and as opposed to my regular 2 pumps every 2 hours), and refrain from exiting my bubble until, at least, Wednesday.  (Today's high in Longmont is supposed to be 10 ... mid 40's by Wed.)  The cold makes the pain worse ... being sick makes the pain worse ... stressing out makes the pain worse.  There is only one of those that I control right now, so I'll keep refusing to stress about it and just play Suck It Up and Deal.

I have faith that I will kick this cold before it has a chance to turn into a full blown upper respiratory infection.  I have faith that, regardless of my health, I will maintain a pleasant disposition so that I may continue to find the strength to fight.  And of course, I have faith that I will place the blame where it's due, on myself, and kick my own ass when I'm feeling better!!

(On a sad and personal note, 37 years ago today, my younger brother, The Angel, succumbed to the flu.  He was two days shy of being 10 months old.  I was 6, about to be 7.  Every year, on his birthday and on the day of his passing, I write him a note.  If two siblings were ever soul mates, he was mine.  Here is a condensed version of today's note:  "37 years ago today you became my Guardian Angel.  Since then, not a day has gone by that I haven't thought of you, shed a tear for you, and smiled because of you.  You may have only graced us with your physical presence for less than 10 months, but I feel your tiny hands on my heart every single day.") 

Sending Out Some Love ... And Songs

At one point, I wrote that there are 5 stages of grief.  Well, guess what?!  I was wrong!!  There are, in fact, 7 stages of grief.  1. Shock/Denial.  2. Pain/Guilt.  3. Anger/Bargaining.  4. Depression/Reflection/Loneliness.  5. Upward Turn.  6. Reconstruction.  7. Acceptance/Hope.  Grief comes in many forms.  It can come from the loss of a loved one, the loss of a relationship, receiving bad news, setbacks, poor health, feeling left out, and Empty Nest Syndrome.  All of these things have happened to people that I care about since the beginning of the new year.  It about kills me to see people that I love so grief-stricken.  I know that they're all strong (I don't befriend, nor am I related to, wussies) and I know that they will all get through whatever it is that they're going through, but my heart aches for the them as they go through the first 4 stages of grief.  And they are all still in the first 4 stages.  For someone as tall and slight as myself, you wouldn't know that my heart is big enough to contain all of the love that I have for so many people, unless you know me, that is.

The good news, despite all of this sadness and hopelessness, is that they all have something in common, even if they don't all know each other.  Me.  These people know that I'm crazy enough to put my pain-riddled-self out on a limb just to get a smile out of them during their grief.  I am that friend that will sympathize, empathize, encourage, and then break out some nonsense in order to create a genuine smile from within.  I become their distraction from their grief, which in turn, makes them my distraction from the pain and whatever other crap I'm going through at the time.  Just don't be surprised if, while you're crying or venting to me, I suddenly break out in song.  For instance: Oh, you caught your boyfriend cheating on you??  I dug my key into the side of his pretty little sooped up 4 wheel drive.  Or ... You're experiencing another flare??  You put de lime in de coconut and drink dem both up.  Or ... Your house feels like a ghost town after all of your holiday company leaves?? Turn up ... the radio!!  But I know, from oodles of personal experience, that once a person has gone through stages 1-3, the sooner they can begin to smile and laugh, the sooner the real healing begins.  I will only allow myself to be sad for 1 day.  In that 1 day, I completely isolate myself from the world so that I can process stages 1, 2, and 3 (shock/denial, pain, and anger).  By the time I get to day 2/stage 4 (depression), I start to allow a few select people back into my bubble (the people who are able to move forward with me instead of dwelling on the ish).  These are the people that give me the strength to get through 5, 6, and 7 (upward turn, reconstruction, and acceptance).  After I have accepted whatever situation I am in, I open myself back up to the world, so to speak.

Life is full of grief and happiness and tears and confusion and struggles and wins and ... well ... it's Life!!  And unless you are a firm believer in reincarnation or are a cat or are Dr. Who, this is the only life that we get.  Sure, we're gonna get our proverbial weenies shoved in the dirt from time to time, and there will always be times when we throw our hands in the air and scream, "Sheesh!!  Now What??"  But after the 1st stage of shock wears off, the healing can begin.  It's ok to feel sad and miss people and things.  It's natural.  It's life!!  The important thing is to keep on keeping on.  RSD has taught me that!!  Every minute that we're alive is a win!!  Every morning that our eyes pop open is a win!!  Every tear stained smile is a win!!  Having spoons, even if it's just 1, is a win!!  Having friends with whom you can make plans is a win!!  Having a family that supports you is a win!!  Battles will be lost.  It's true, this is life that we're talking about here.  But if you break it down to the tiniest detail, the wins do outweigh the losses.

I have faith that the people whom I love will heal from their grief.  I have faith that they will all experience it again, and I have faith that I will be there for them then too.  If a face can launch a thousand ships, and a picture is worth a thousand words, then a smile, from within, should be able to erase 1000 losses, dontcha think??  My thoughts, prayers, well wishes, and positive vibes go out to all of you today (you know who you are).  And if you need to smile to erase a few losses, <cue another song> Call Me!!!

Ratting Out Mommie

Hi Ho!!  Kiva The Dog here!!  Did you know that my Mommie is nuts??  If you didn't know that, now you do.  If you had suspicions about it, I am here to confirm them.  If you already knew this little tidbit of info, let me just tell you now that, "It's gotten worse!!"  For 3 days and 2 nights Mommie didn't sleep.  She rested a little here and there, but there was zero sleep involved.  And what's crazier than that is I honestly can't remember if she ate during all of those awake hours.  Oh wait!!! ... she made a four egg omelette yesterday afternoon ... after she finally finished the project that she bled, sweat, cried, and spent spoons on for those 3 days.  She ate 3 eggs of it and shared the rest with me ... and then she turned off her phone and slept!!  For 11 hours she got her normally interrupted nights' sleep!!

What has Mommie so motivated??  Duh ... Crazy Sock Day 3!!  It's exactly 2 weeks away!!  Last year Mommie compiled most of the pictures that were posted on Facebook so that she could make a slideshow for the Smiling Warrior and so she'd have something to send out to the schools and media for this year to promote the day and the awareness that needs to be raised.  It took her 50 weeks to get that slideshow finalized and published, but she did it!!  And the Warrior Mama said that it put a smile on the girl's face!!  Considering that she was in the hospital getting an NG tube put in (again), Mommie took that as the greatest compliment ever!!  (The rumor is that the Smiling Warrior is being released today ... perfect timing, Mommie!!)

Mommie warned me that the next 2 weeks will be a lot like the last 3 days ... Crunch Time!!  Time to get everyone that's involve-able, involved.  It's one thing to just take part in the day, it's a completely different thing to garner the needed support to pull the day off with style!!  The Smiling Warrior deserves it, RSDers and GPers deserve it, the Medical Community needs it, and the families need to know that their Warrior is not alone, and neither are they!!

I have faith that Mommie will put every spoon in her arsenal to good use for the CSD3 campaign.  She's not The Crazy Cripple for nuthin'!!  I have faith that she'll rest in February, and I have faith that I will faithfully stay by her side to remind her to eat, sleep, laugh, love, and play ... it's just up to her to recognize my efforts!!  Go run your errands, Mommie, before the bad weather sets in ... and then ... It's nap time!!

If you'd like to participate in CSD3, go to: https://www.facebook.com/events/102271203267678/?fref=ts

To see the video that Mommie made, go to: http://www.youtube.com/watch?v=PHYFugf_UU4

Peace out!!!  I just found my tennis ball!!!      

Owning 2013 ... So Far

It's Day 4 of the new year and I am totally owning my New Year's Resolutions!!  Ask me again in a week, but for now my whole world is looking up!!

Even though I spent part of New Year's Eve babysitting the Munchkins (and having a blast doing it), I ended 2012 kinda bummed out.  Before Christmas I had asked God for a sign.  Well ... I got His sign, but it wasn't the answer for which I'd been hoping.  I allowed the emotions to run their course and by the time I awoke on New Year's Day, I ... had ... a ... plan.

My plan, to find new ways to do things that I used to enjoy before RSD took over my body.  Including; but not limited to, spending time in the snowy mountains and traveling.  Well guess what?!?!  Plans have already been made for both ... and that's just within the next month!!

Sometime in the next couple weeks, I will be traveling to see the Bombshell and the Munchkins in Kansas for a couple days so that I can go to my sister's school to promote Crazy Sock Day 3, which just happens to be in 20 days!!  Whether I fly or drive remains to be determined, but awareness must be raised, the Smiling Warrior must have support, and there must be a competition between the Bombshell's elementary school and Houdini's charter school (because in our family, I like to create a little healthy competition).

For the weekend after my 44th birthday, also known as Super Bowl Weekend, my ColoAngel has arranged a place for us to stay so that we can go tubing, in the snow, up by Grand Lake, CO ... and then there's the Super Bowl!!  Just the mountains, the snow, football, and me!!  (and a few carefully chosen bodyguards that I feel comfortable enough to scream out in pain around ... just in case.)  Should I end up hurting a ton, the greatest painkiller would be if the Denver Broncos make it to that Super Bowl and win one for the gimp!!!

And finally, I decided that I would play Suck It Up and Deal by coaching club volleyball for the remainder of the winter and spring.  I have been toying with this idea for about 2 months, but I just couldn't bring myself to commit.  Yesterday I signed on the dotted line and committed ... now to pass the background check!!  HA!!  (It's all good, I'm pretty sure I'll pass.)

I have faith that I will stick to my resolutions of 2013.  I have faith that, even though I feel hope slipping away, I will cling to what I do have instead of dwelling on what I don't.  Painbedamned, I'm off to a great start!!  HAPPY 2013, Y'ALL!!!!!!

Tag, I'm It

Let's talk about being single, living alone, and having RSD, shall we??  I'm it.  I'm all I've got.  When I fall, when I can't get up, when I can't walk, when I need to eat, I am the only person in the house that I can look to for help.  So if I don't eat, yes it's my own fault, but then again, not really.  I could get up to cook (or reheat) if it didn't hurt so bad to stand on flaring feet, or if the dystonic tremors would subside long enough for my hands to hold on to pots, pans, dishes, and utensils.  There are times when I have to booty-scoot through my house because my legs just can't do it alone.  Times like when I have to go to the bathroom, refill my coffee cup, let Kiva out, answer the door, or turn on the lights.  It's do-able, but it sucks and it's exhausting.  And I don't have many fellow RSDers with whom I can commiserate.  Most RSDers that I know have a spouse, a roommate, a parent, a sibling, or child that can help out at any given time.  I have a dog that licks my face when I cry. (her lack of opposable thumbs makes it difficult for her to help)  

Yes, I can always call someone to come over and help me, but I still have to get to the front door to unlock it and the unlatch the screen door as well.  (I'm a single woman who lives alone, yes, I keep my doors locked and latched!!)  There have been times in the past when every one of my "rescuers" have been unavailable and have I ever mentioned how much I loathe having to ask for help outside of my fam??  Ugh!!  During the Christmas season it's even more difficult for me to ask.  Everyone is busy shopping, baking, traveling, going to holiday parties, spending time with their loved ones ... I can't be the source of interruption.  I categorically refuse!!  So I suck it up and deal and do it my way.

Last night was a big holiday party night for my family.  Yesterday was also the last day to pick up my Ketamine sprays before they closed for 6 days.  (They're only open from 1 in the afternoon until 7 at night ... prime holiday party time)  It was below freezing outside at 5:30 when I got the call that my scripts were ready, the fam's parties were in full swing, and I was forced to rescue myself.  I bundled up (4 layers and a down coat), let the car idle in the garage (with the door up ... I'm not that dumb!!) for 15 minutes with the heater blasting and then Kiva and I made our way out into the cold, dark niiii...evening.  (Luckily, my SS check was directly deposited a day early so I was able to afford this adventure on my own.)

1st stop was for the K sprays, of which they only had 1 ready for me.  The 2%, but they ran out of K to make the 4%.  Super duper. <smh>  2nd stop, after glancing at the amount of gas left in the car, was the gas station.  Since there was no one available to stand in the cold to pump the gas for me, I put on 2 pairs of gloves and did it by myself.  As I was marching in place to try to stay warm, I got hit by a cold wind and I about lost it right there.  Green in the gills, I had one more stop to make at the other pharmacy that has normal hours and takes care of my stomach and upper respiratory shi....stuff.  I waited in their drive-thru for 20 minutes.  I had warmed up, but I was still partially seized from the onset of the chill.  And then my stomach growled.  I got my scripts, took one of my nausea pills, and opted to turn my night around, for the better.  Because I'm the only one that can help me.

After a quick stop at McDonald's and Redbox, Kiva and I came home and cuddled up for dinner and a movie.  Thank you, Avengers, for coming to my rescue when I was finally too weak to do it myself!!

I have faith that when I have to suck it up and deal, I can.  Even if it causes me more pain, I'll just keep on doing it my way because I don't have a choice.  I have faith that I will continue to "be it" for myself when everyone else that has a life is unavailable.  It's Christmas week, the Bombshell and the Munchkins will be here late tonight, I'm going out with the Fun Folk tonight for an End of the World party (cuz it's 12-21-12), and I am stoked to have the whole fam together for a while!!  I have faith that I"ll recover from all of this, I have to!!  I'm "it"!!

If I don't get a chance to blog again before Tuesday, may you all have a blessed Holiday Season.  Merry Christmas, Happy Kwanzaa, Happy Holidays, and to my Jewish friends that are wrapping up Hanukkah I wish you a Happy Movie Night ;) 

... Peace to you all and much love from Kiva and The Crazy Cripple!! 

All I Want For Christmas Is.........

All I Want for Christmas is a Cure.  That seems to be the general consensus among the RSDers on Facebook ... and in real life.  I can't even begin to describe how much I want a cure for them as well!!  No one should have to endure this kind of physical, mental, and emotion trauma ... ever!!  Especially the kids!!  Man, they need to have their childhoods!!  They need to be worried about tests, sports, sleepovers, what color bike they want for Christmas, boyfriends, girlfriends, younger siblings reading their diaries/journals, and who they're taking to the Winter Formal.  These kids do not need to be setting alarms to remember to take meds, or foregoing skiing or sledding trips because it's too cold or wearing boots would hurt too much or just the thought of the pain from falling down causes a panic attack.  They don't need to be worried about missed schoolwork from an overabundance of "sick days" when the pain is too bad to move.  That is my Christmas wish for all of my fellow RSDers, a cure!!

As for me, 21 years is a long time to live with something 24/7.  Even with a spouse/partner, there are minutes/hours/days of separation, even if it's while they're sleeping.  But living with RSD, and never having had the benefit of a period of remission, there has been no escape for me.  Even when I ran away to Hawaii (twice) my RSD was still with me.  When I got married, divorced, had to quit college, became an aunt, and coached volleyball and basketball - I had RSD.  Every time I've tried to move away from this town, I've had to come back because my support system of family and doctors and therapists are here.  The friends that know how to handle me social situations are here too (these are also the same friends with whom I feel comfortable enough to let my guard down, not something I do often).  I have had to reconstruct so much of my life over the last 21 years that everything I do, both consciously and subconsciously, revolves around minimizing pain, spending energy (spoons) wisely, and planning to the nth degree, no longer able to be spontaneous.  (I miss spontaneity ... just sayin'.)  RSD has become my livable life.  I don't remember what it's like to not be in pain, but I also don't know how I would react to not being in pain, if a cure was discovered tomorrow.  Before my RSD I was selfish, devious, crass, a daredevil, and rude.  RSD taught me how to be a better person, will I revert back to those old ways if I was painfree?  I sure as schnikes don't want that!!  

In the past, I have balked at making a Christmas Wish, only because I have learned to be grateful for the things that I already have; a hand-me-down car, a neighbor's old couch, hand-me-down clothes, a roof over my head, the love and generosity of dear friends, the love and support of a stellar family, a maniacal mutt, soap, coffee, hats, and a winning Broncos' football season.  I am a grateful girl, fer sher!!  But there is one thing that I don't have, and that will be my Christmas Wish for myself, if we survive the zombie apocalypse, that is.  I can only hope and have faith that it exists.  However, I refuse to put my wish into words.  I won't write it down and I won't speak of it.  It is in my head and my heart and I feel like if I "put it out there" that I'll just end up jinxing myself and I've had enough disappointment for one lifetime, thanks to having RSD.  

I have faith that good things will happen for all of us this Hollerday season, PainBeDamned.  I have faith that if I don't get my wish, I will continue to be grateful for the things that I do have.  I have faith that I will continue to live un-spontaneously and plan out the good times in which I am able to participate.  I'm taking a huge gamble on this Christmas Wish thing ... apparently it's what you do when you have "faith."

Did That Really Just Happen?

Oh what fabulous weekend I had ... sprained knee and all!!  Considering the fact that I'm uttering those words in December, normally one of the coldest and snowiest months of the year in Colorado, is nothing short of a miracle!!  For a change, the Skank (aka Mother Nature) has blessed me with an unbelievably warm Hollerday season so far ... now that is soon to change, according to the Weather Channel, but I rode the heat wave like a champ!!  Speaking of "Champ," did you see that freaking Bronco's football game on Sunday????  I WAS THERE!!!  Champ (Bailey), PFM (Peyton Freaking Manning, for those of you living under a rock), and the boys are the AFC West Champs!!  And I ... WAS ... THERE!!!  I tailgated, I walked, I chanted, I thwarted, I cheered, I screamed, I laughed ... I was at Sports Authority Field at Mile High!!  And we won!!!!!!  It's the little side stories that make up the adventure though, and I had quite the adventure leading up to that big AFC West title finish ... And here it is...

About 6-ish months ago or so, ColoAngel invited the Red One and I to become members of a private Facebook group of Denver Bronco's fans, which, for the blog, we'll call the "Knuckleheads."  We talk about all things Bronco and sometimes life in general, when one of us is feeling down, but for the most part it's all Bronco banter!!  The members span the entire country from Florida and New York to California, and Montana to Oklahoma and Texas, but the majority of us live right here in CO.  Anyway, we finally had a meet and greet with about 20 of us at a Denver restaurant on Saturday.  Knuckleheads came in from Montana, Washington, and the western slope.  We basked in the glow that is Mrs. Barrelman!!  Yes, Mrs. Barrelman is a Knucklehead too and she showed up with all sorts of photo albums and swag!!  (I came home with bumperstickers, coasters, and a Shannon Sharpe trading card.  She is, hands down, the sweetest woman I have ever met!!)  She also invited us all to join her for tailgating before the game on Sunday.  Almost everyone at the table, including the Red One, had tickets for the game.  There were only 2 of us that weren't going, me (because it was December and who knew that it was going to be warm enough for me to be outside) and Otis, a childhood friend of another Knucklehead.  The GM of the restaurant had heard us talking about the game, saw me pouting when the rest were making plans, walked over and told me that he knew of 2 south stands tickets going for face value ... $80!!!  Otis' friend heard the conversation and offered up the other ticket to Otis.  I had hoped to either be able to take Houdini or my Porno Dealer (they know how to handle me and my RSD in crowds, and they are both huge Bronco fans as well) but it was too late and I was not about to miss an actual Denver Bronco divisional championship game, are you kidding me???  Otis seemed like a nice enough cat, mellow, covered in facial hair, and a Bronco fan.  The plan was that I would be the DD to and from Denver with the Red One and her friend from work and I would meet Otis and the GM's brother (he had the tickets) at the south stands gate.  OMG I was going to the Bronco's game!!!!

Sunday ... I donned my cat suit, a pair of jeans, crazy socks, a long sleeved t-shirt, and my Champ Bailey jersey.  I tied a warm hoodie around my waist, put on my walking tennies, grabbed my cripple stick (cane) and I picked up the girls and headed to the Mecca!!  Mile High!!  (It isn't the same as the old Mile High, that was the real Mecca, but it's a close 2nd!!)  After about 2 miles of walking we found Mrs Barrelman and the rest of the Knuckleheads, minus Otis and his friend.  We hung out, we took pictures, we chanted, they were drinking beer, wine, and orange margaritas made in an orange chainsaw blender.  I drank Pepsi.  I was to meet Otis and the GM's brother at 1:30, so at about 1:10 I had to start cripple-walking my way up the hill.  As I was handing the brother my money (borrowed from Houdini and my parents) Otis stumbled up reeking of beer.  Not even knowing this clown's last name, I had to talk him through getting out his wallet to pay for his ticket.  We got inside the gate and made our way up the ramp to the 2nd level.  As we were walking up the ramp, he tried to make me jump on his back.  (Yeah, there's a genius idea!!  Let's put a woman who's already in intense pain on a drunk's back and make them go uphill!!)  I stopped to buy a Coke and when Otis tried to buy a beer, he was denied.  Yes, I laughed ... openly.  Up we went to the southeast side of the JumboTron ... to the very last row!!  The Red One and her coworker had seats on the west side, ColoAngel, her dad, and a few Knuckleheads were on the northwest side, Mrs Barrelman was on the northeast side, and the rest of the Knuckleheads were on the southwest side, right above the tunnel where the players come running out.  

Now here's where the story gets awkward, at no time, and in no fashion, was this ever a date.  But that didn't stop Otis, and I thwarted his every advance.    Every time he so much as tried to touch me, he got his hand slapped.  Six different times he asked me, "So what's your story?"  Five times he asked me, "Why the cane?"  I kept reminding myself that I never had to see him again and that I was at a Bronco's game!!!  I told myself that this was a test as to how I could handle myself in a large crowd with no one to lean on or assist me, if I should need it.  With 4 minutes left in the game, Otis decided to go down to the restroom ... and never came back!!  To say the least, I was relieved!!  The other fans around me laughed when I leaned back in my seat and said, "Oh thank God!!"  They thought it was a date too but, in no uncertain terms and with all of the humor I could muster, I set them straight.  The gentlemen that were sitting on the other side of Otis walked down the steps with me after the game, calling me a "good sport" and saying "true Broncoholic beats an alcoholic any day of the week."  The Red One and I had already worked out where we would meet after the game, so after a "quick" stop at the restroom, I headed down the ramp ... solo!!!

I have faith that I will never put myself in that kind of situation again!!  I have faith that Champ, PFM, and the boys will continue to amaze us throughout the playoffs!!  I have faith that, should the situation present itself, I can absolutely handle myself in a crowd, with my held high, smiling through the pain and anxiety.  I got to go to a Denver Bronco divisional title football game in December!!!!!!!!  And I have RSD!!!!!!  Those kinds of amazing things just don't happen every day!!  I have faith that I will lie on my couch like a lump of poop for the rest of the week, because after I damned the pain, it damned me back.  But I can writhe and cry with visions of greatness in my memory!!  I saw PFM play football with my own eyes!!!!