Doing the Right Thing Even When It's Hard

The vicious cycle of making the hard decisions has run it's course once again.  I despise, with every fiber of my being, having to "play the tape" of every possible scenario in order to make the right decision.  My heart aches because the "right" thing isn't what I want to do!!  This is another example of what living with RSD is like.  Having to make those hard decisions on a daily basis.  And I'm sick of it!!!  However, I know that I always have a choice.  I can continue to be sick of it while doing it anyway, or I can give up and quit life.  For me, this is the only easy decision that exists in my world.

The world lost a great man this last week.  I first met Don when I was 5 years old.  My dad had just graduated from law school and Don offered him his 1st partnership in a small, southwestern Kansas town.  It was just Mom, Dad, and myself at the time.  We knew no one in that part of the state and Don (and his family) took us under his (their) wing(s).  Don and his wife had 3 children, the youngest of whom was in high school when we arrived.  All of a sudden this kindergartner had 2 "big brothers" and a "big sister," but Don became more of a grandfather figure to me than an "uncle."

Don was in his 80's and dementia had taken it's toll on his mind.  We knew that this day was coming, but that still doesn't soften the blow of his passing.  My heart breaks for my dad today, knowing that they are burying his longtime father-figure and I cannot be there with him.  This was my "hard decision."

And here's how I came to that decision ... We were to drive 5.5 hours on the 12th, attend the viewing, the funeral, and visit with friends and family.  We were to stay for 2 days and drive the 5.5 hours back on the 14th.  The Bombshell and the Munchkins are flying out for their Spring Break on the 18th and I had already set it up so that I would pick up my Ketamine spray refills today (the 13th) to ward off the anxiety of having to manage my meds while they're here.  I wouldn't have had enough spray from my last refill to make the trip ... which might have led to a flare that could have prevented me from being a part of next week's activities.  I am now 1 month away from my next series of bi-annual Ketamine nerve blocks and my spoon supply is growing more and more sparse while my recovery times grow longer.  But when Dad and I sat down and talked out all of the possibilities and all of the previously made plans, the smart decision became the hard one and all I could do was wave as Mom and Dad drove away (and then bury my face in Kiva's fur and bawl).

I will always remember Don!!  I will remember walking into his office and seeing his massive collection of elephants which, to a 5 year old, numbered in the thousands!!  I will remember dancing with him during the "Grandparents Dance" at my own wedding (even though the marriage ended, I have that happy memory)!!  I will always remember his cheesy smile and his nasally snicker of a laugh.  He will remain a hero in my eyes for the rest of my life ... my hero with a halo!!

I have faith that Mom and Dad will my express my deepest sympathies to the family in my absence.  I have faith that time will lessen the pain, even though the void will remain.  I have faith that I will have an amazing time with my sister, niece, and nephew next week.  I have faith that the circle of life will continue and the wisdom of the ages will be passed on to all of the Littles of the future generations.  And I have faith that I will continue to be the person that my Hero With A Halo believed me to be.  I owe him that much!!

        

Ugly Begging

Dear 25-32 Loyal Readers,

I need your help!!  Please help me save what's left of my sanity!!  In this book of short stories that I am writing, I am basing the stories on blog posts.  I've already completed the stories about my 8 personal favorite blog entries (including 2 stories written by Kiva), but now I'm completely stymied, and I need at least 5 more to complete the "collection."  Here is where your input can have some serious impact.  What are 1 or 2 of your personal favorites?  Which behind-the-scenes stories do you, my faithful stalkers, want to read?

Ever since my discovery of Nirvana, I've really been trying to keep myself focused on writing.  I know, with every fiber of my being, that I can make some money with this thing.  I've published poetry and short stories before, and only the critics have hated me.  The masses, apparently, think that I'm a decently indecent writer.  In less than 3 months, my monthly income will decrease by $150.  The car that I purchased for my ex-husband out of my Medical Trust, while we were still married, will be paid off.  I had to word it as "alimony" in the divorce papers so that he couldn't get out of paying me back.  I will receive my last check from him in April. 

It's been hard enough trying to live on $750 a month, now I have to start looking at re-budgeting my life to operate within a $600 window. <sigh> This is what happens when you contract RSD through a work injury and you're working as a waitress making $2.11/hour + tips.  My worker's comp checks were a joke, so I kept working.  My stubbornness caused the disease to spread and I was then faced with having to file for Social Security Disability based on my wages as a waitress.  Oh joy!!  (People, if you're in the service industry, claim more than 8% of your tips as required by law!!  You never know what could happen!!)

Since I am still unable to work, I have to find another way to make money.  I suck at being an Independent Consultant and I loathe sales.  They both stress me out (more pain) and I end up spending more money than I make (again, more stress and more pain), so most home-based opportunities aren't an option for me.  If I'm going to have a shot of ever getting passed living paycheck to paycheck and depending on the kindness of family and friends to fill in the paycheck gaps, it's going to be through my writing.  I am writing about the 1 thing about which I am most passionate ... raising awareness for RSD.  So ... Comment here on Blogspot, or comment on the links on FB, Twitter, or Google+, and let me know what your fave blog entries have been, please!!  Yes, I'm begging.  No, it's not pretty.

I have faith that I will get out of my financial handcuffs eventually.  I have never been as determined as I am now, to make good things happen in my life!!  I have faith that even if I don't make Oprah's Book List or The New York Times Best Seller List, I will still touch some lives with my stories about having a life despite RSD.

Thanks for sticking with me, folks!!  All help received will probably get some kind of "honorable mention" in the book ;)

Sincerely,
Jenn ~ aka The Crazy Cripple

Finding Nirvana

Nirvana: A transcendent state in which there is neither suffering, desire, nor sense of self.

(In this particular blog, you will meet a few new characters from my crazy life ... Neffy: a valued and cherished employee and friend of my ColoAngel.  He has adopted me as his "Auntie Jenn," and I just love that kid!! ... Fave Hubs: ColoAngel's husband, and, consequently, my favorite husband.  'Cuz he's just that cool!! ... Grunt-N-Stuff: ColoAngel's American Bulldog, and soon to be Kiva's BFF, whether they want to be or not!! ... and last, but not least, Grace: One of Neffy's best friends, a former employee of my ColoAngel, another adoptee of Auntie Jenn, and a klutz in the purest sense of the word.  I used to think that I was a accident prone, but this girl puts me to shame!!) ... Ok, ready for the story??

I have discovered paradise!!  Ok, so I didn't discover it personally, but I was introduced to it this last weekend.  Oh ... My ... Wow!!!  When my ColoAngel and Neffy first started telling me about this place a year ago, it sounded nice.  Now, having experienced the Lake House for myself, "nice" is probably the worst description known to mankind.  This place was Colorado Perfection!!!  It's not just by the lake.  The front door is about 20 feet from the shoreline of a small, satellite lake of Grand Lake.  (I say "small" but it's really not.  It's just small in comparison to Grand Lake.)  There was a fresh blanket of snow spread across the ice covered lake and white mountain ranges engulfed us on all sides.  The air was cool and crisp and I didn't give a rat's ass!!  The beauty and tranquility that overcame me the moment that I stepped out of the car was more beneficial than my last 4 Ketamine treatments combined.  It even made me forget about the moronic brunette with the New York license plates who delayed our arrival by a good 40 minutes with her inability to partake of the pull-off's for slower traffic on snowy mountain roads.  I'm pretty sure we topped out at 15 mph while we were trapped behind her.  We all said a silent prayer of thanks when she finally turned at the Winter Park ski resort ... and then I think we prayed for all of the other skiers on that mountain, but I was too busy flooring the gas to hear anyone say "Amen."

The Lake House is, in fact, a 4 story condo that is owned by Neffy's family.  3 bedrooms, 2 bathrooms, a full kitchen, a living room with a potbellied stove and flatscreen, and a deck that overlooks the lake.  As soon as we got through the door, Neffy went to work turning on the water pump and chopping kindling for a fire, as Fave Hubs and Grunt-N-Stuff unloaded all of our bags and food from the car.  My ColoAngel started slaving away in the kitchen, chopping potatoes, onions, and carrots to accent the roast beef that she was making in the crock pot ... aaaand then she put together a chocolate cake ... uh huh ... she loves me!!  I'm not sure what Grace was up to at this point, because I had found the deck ... and the view ... and my Nirvana!!  I couldn't think, I couldn't speak.  I was in awe of the majestic beauty that lay before me.  At that moment I wasn't lonely, I wasn't sad, I wasn't angry, I wasn't tired, I wasn't sarcastic, and I didn't have RSD.  I was one with the universe.  I wanted to hold onto that moment forever!!  <sigh> But life crept back into my consciousness in the form of Grunt-N-Stuff copping a squat right in my line of sight.  I giggled and then realized that I did, in fact, miss my Kiva.  She spent the weekend with my Porno Dealer (hats, people!!  It's not real porno, it's Jenn-Porno).  Of course I worry about her, but I worry less when I know that she's with him.

Being drawn back into reality, the pain crept back in too.  The roast and veggies were in the crockpot, the cake was in the oven, the car was unloaded, there was a fire roaring in the potbellied stove, and Fleetwood Mac was playing on the stereo.  We had forgotten to take innertubes up with us, but Grace had brought her sled/disk/thingy and the gang was headed to the nearest hillside.  I was still allowing my body to recover from the 3+ hour drive, so I opted to stay inside and be there for the cake.  It was going to need me ... to take it out of the oven and hover over it for a while.

When the parade returned, Grace was um ... covered in snow.  Not too surprising since they were going sledding, but somehow she had managed to sled herself off of the disk and rake her back down the only un-snowy patch of rocks on the hill ... and this was just the beginning of our 30 hour adventure.

Needless to say, my brilliance smacked me upside the back of the head again as we all sprawled out in the living room to watch an X-Men movie.  "I could finish my book here!!"  I am so distracted by life when I'm at the Chalet, that my writing has been sporadic at best.  But at the Lake House, there is no distraction!!  There is inspiration and motivation to write, but nothing to distract me!!  And if the book is any good, I can buy a damn lake house of my own!!

The mellowness of the moment had us all asleep before 10.  Actually, I don't think my ColoAngel saw 8 and I'm pretty sure that I didn't see 8:52.  It has been a looooong time since I've been that relaxed!!  I had hoped that the thinner, cooler air would have helped me to sleep better, but my normally interrupted intervals were definitely less frustrating knowing that I was surround by God's country.

The food was amazing, the company was hilarious, and the ambiance was perfect for 5 friends and a dog who desperately needed a getaway!!  And I can promise you that I will go back!!  Sooner, not later!!  I'm already devising a plan to try and rent the Lake House for a week ... like from a Wednesday to a Tuesday, to avoid driving among idiot tourists.  I will finish writing my book and this is the perfect place to do it!!  And this time the Keevster will accompany me.  If the gang wants to join me for the weekend part, that would make it even more perfect, but for now, this is my brilliant idea/plan and I have faith that I will make it happen!!

I have faith that I have found the Nirvana that I so desperately needed.  I have faith that I will finish my book and make some money off of it, and if it's not enough to buy my own Lake House, I'll just keep renting Neffy's!!  I can't remember the last time that something made me forget about my RSD.  I have to get that feeling back!!  And I have faith that I will!!!
         

Living 44 For Me!!

Remember when you were a kid and everyone in their 40's was old??  (I, for one, can attest to this!!  Growing up, my Grandma used to tell me that she was "39 and holding" ... every damn year! And she was a grandma, and gray, and wrinkly, and well ... old!!)  So ... in kid-terms, I am now the old one!!  And you know what??  I'm ok with that!!  I don't look my age, I don't act my age, and I don't see any of that changing anytime soon.  What I'm not ok with is that this is the year that I will have had RSD for half of my life.  Other than that, I say, "Bring it, 44!!"  I am way too excited to see what this year has in store for me that's non-RSD related!!

January 30th started out like every other birthday that I've had to date.  I woke up ... and that's always a great way to start to any day!!  I got the family phone calls, Houdini brought me my fave coffee, I was serenaded numerous times, the Munchkin's babysitter made me a Munchkin Hatty Birfday Video, I baked Hatty Birfday Bupcakes (newly named by the Warrior Mama and myself), I got cards in the mail, I got deliveries, Mom and Dad brought me dinner and presents (2 new lamps complete with new lampshades that I'm not allowed to wear on my head, and an iPad Mini of my very own!!), my Facebook friends blew up my wall with bday wishes, and I fought a flare ... successfully!!  All pain issues aside, it really was a great day!!

But ... My anniversary of birth is also the time when I reflect on what's worked for me in the previous year and what hasn't.  It's when I tweak and re-tweak my personal "rules."  It's when I make more than just resolutions.  It's when I make the decisions that protect my body, soul, and mind.  My New Year's Resolutions are the things that I am going to do.  My Birthday Rules are about who I keep in my life, and how I allow myself to be treated.  Being single and in my 40's is one thing.  Being a 40-something, single RSDer is something completely different.  

As Normies age, they feel it.  It takes longer to heal, joints creak and pop, there's usually some form of grunt or sigh while getting up from a sitting or lying down position, and everything seems to take just a little more effort than it used to.    

As us RSDers age, not only does it take us longer to heal, but the pains remain even after the healing is over.  Our grunts are replaced with cuss words under our breath as we rock back and forth to build up enough momentum to get up from any position.  When our joints creak and pop, pain radiates through our nerves and we are subjected to the possibilities of a flare.  And the effort that it takes to do even the simplest of household chores takes a long, self-pep-talk worthy of The Gipper.  

I am now 2 days into being 44 and my new "rules" have been implemented.  The people in my life who can possibly cause me bodily pain, have been weeded out.  The people who only come around (or want to make plans with me) on my good days have been kicked to the curb.  The men that only can talk about sexcapades during conversations have been mentally castrated.  But ... The people who make a conscious choice to keep me in their lives, during my bad days as well as my good, are the people with whom I choose to spend my time, spoons, and love.  Marilyn Monroe once said, "If you can't handle me at my worst, then you sure as hell don't deserve me at my best."  People must now win over my heart, my mind, and my soul if they want to be a part of my actions.  New rules!!  Gotta love 'em!!

I have faith that 44 is gonna be a blast!!  I have faith in the people that I have chosen to remain in my life.  I have faith that this is a new year in which new things are possible ... maybe even romance.  (Hey, it could happen!!  And if it doesn't, I still have batteries!!)  I have faith that my witty sense of humor, random intellect, and charming personalities will keep me moving forward in my 44th year.  I have faith that I will stick to my new rules and not be swayed from them.  And I have faith that if anyone does try to sway me from them, they will be met with a swift kick outta my life.  My new rule is to respect myself.  Join in with me or get the hell outta my way!!  Helllllllooooooooooo 44!!    

Mission/Obsession ... I've Heard It Both Ways

When does a mission become an obsession? Well, when your actual birthday falls within a week, either way, of the Smiling Warrior's Crazy Sock Day and you're more excited about CSD than you are about your own birthday, you have joined in the ranks of the obsessed with Houdini and myself!!  Real quick, I would like to give a huge shout out to the birthday boy, my brother, Houdini!!  I would also like to thank him for not wearing his Crazy Socks today, like he had wanted!!  I had to bribe him to hold off!!  So today he will be sporting a Superman t-shirt under his button-up Oxford.  He called me this morning to tell me that he's been practicing ripping his shirt open like Clark Kent.  In my eyes, this just means, "mischief managed."  In other words, crisis averted and socks saved for a day!!

It is true though.  Houdini came over last night to get his bribery birthday gift and we had a long talk about getting older.  For exactly 1 week out of every year, I am only 13 years older than him.  So when he talks about "getting older," I laugh at him.  Not with him, at him!!  Or at least I used to.  Today he turns 30 and he has finally realized that age is just a number.  As he was leaving last night, he turned to me and asked, "Is it wrong that I'm more excited about Crazy Sock Day than I am about my own birthday?"  I told him, "Nope, it's not wrong.  It's in your makeup."  With that, he nodded in agreement, said, "Well, I am my sisters' brother," and he closed the door behind him.

The 3 of us (including our sister, the Bombshell) live for being behind the scenes.  We love to coach, teach, encourage, promote, and support the greatness of others.  We don't want the spotlight for ourselves, but we want to know that we played a large part in getting someone else there who deserves it.  I guess you could categorize this as "learned behavior." (Thanks Mom and Dad!!)  The Bombshell has the Munchkins and her kindergartners, Houdini has his 5th graders and his volleyball girls, and I have all of the above (by proxy) and ... raising awareness with The Smiling Warrior!!

With that being said, tomorrow is the 3rd Annual Crazy Sock Day!!!!!  This is the day that we all show our support and love for the Smiling Warrior and raise awareness for Reflex Sympathetic Dystrophy and GastroParesis by wearing the craziest socks we can find and posting the pictures to Facebook.  As of this morning, 1867 people have joined the event page!!  Keep in mind that this number does not include all of the schools, offices, and other non-Facebookers that are participating tomorrow.  If you haven't joined already, now is a great time to become a part of history ... The largest social media awareness event to date!!
Go here to join:
https://www.facebook.com/events/102271203267678/

We have also created a community page where everyone can post their sock pictures tomorrow.  Go here and give us a "Like" and be a part of blowing up FB with crazy sock pics:
https://www.facebook.com/CrazySockDay

If you're still not sure what to do or why you're doing it, check out this video from last year's event:
http://www.youtube.com/watch?v=PHYFugf_UU4

If you're a Twit-terer ;) you can use the hashtags #CSD3 #RSD/CRPS

I have faith that Houdini will have a great birthday, now that he has his new t-shirt as a distraction.  I have faith that I will rest up and save my spoons today so that I am ready and raring to go bright (dark) and early in the morning for CSD3!!  I have faith that we will all pool our efforts to give the Smiling Warrior something to really smile about tomorrow!!  RSD and GP aren't contagious, Awareness is!!  Help us infect the world with knowledge and understanding of these debilitating diseases!!





 

Celebrating (and Respecting) The Days

Martin Luther King Jr. once said, "An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity."  (What??  It's MLKJ Day, thought I wouldn't quote that genius of a man??)  The same can be said and/or applied to the life of an RSDer.  Chronic pain is a large and all-consuming beast.  But it doesn't have to be all-consuming, it can be used as a springboard to a brighter way of life if the sufferer can make the conscious decision to step outside of their little box and see that Earth does not revolve around them.  I am so incredibly proud of the RSD community dwellers that have done just that!!  The sufferers that turn their negatives into positives continue to refuel my hope in a brighter future for all RSDers.

I am noticing more and more RSDers turning their fateful day of contraction into something that deserves to be acknowledged and celebrated.  This elates me!!  I joined Facebook in 2009, and since then I have met numerous RSDers.  Some give me hope; some inspire me to be a better person; some make me crinkle my eye brows and shake my head; some piss me off with their lies, negativity, and selfishness; and some, very few in fact, put other RSDers ahead of themselves and strive to better the "whole" and not just their "one."  The same can be said of RSD caretakers and family members.  Some Normies get so wrapped up in their own RSDer that they forget about the feelings of others, RSDers and Normies alike.  Everyone deserves to handle their Date of "Injury" as they see fit.  It's called Free Will.  But those who choose to celebrate their anniversary, deserve to have that day recognized, more-so even than an actual birthday.  It's the day we began to survive!!  Almost everyone gets a shot at "birth" but not everyone gets a true "survival story."  Our anniversaries are our soapboxes for our individual survival stories.

When RSDers have made the conscious decision to fight back, I have made the conscious decision to participate.  Over these last few years I have participated in a Superhero Day, a Comfort Food Day, an Ice Cream Day, a Dress Your Animal in Orange Day (FURSDay ... yep, that one's mine), an Orange Mani/Pedi Day, and, of course, Crazy Sock Day.  If you or your RSDer have a way to celebrate your/their day, let me know and I will participate in that one too!!  Just know this when asking me to join in your fun, I participate out of my respect for survivors.  Everyone deserves for their day to be special and just about them.  When someone tries to promote their day, event, or RSDer on someone else's day or at someone else's event, I take offense and begin contemplating withdrawing my participation from the infiltrator's day.  In my opinion that is selfish coattail surfing.  If you want to have friends and supporters, you must first be a friend and supporter.  Just because we have RSD does not mean that we are entitled to everyone's support, nor does it give us carte blanche to demand their support.  So if you do have a Special Day, be respectful about it, please.  The more UNselfish we are, the more the world opens up and supports us.

Last year, The Warrior Mama asked me, personally, to spearhead Crazy Sock Day because they, as a family, were preparing for the Smiling Warrior's GP surgery.  This was one of the greatest "yes's" I have ever given!!  I stepped outside of myself to help another RSDer and the cause became a mission ... and then it became my "job."  This is how I get out and help someone other that myself.  This is my unselfish act.  This is my ambition.  No one asks for money or donations of any kind.  It's just awareness, pure and simple.  And promoting awareness is my life!!  This year I get to work hand-in-hand with the Florida Warrior Family as a co-administrator, along with our Spunky Warrior from Mass.  I am blessed with people in my life that have the same goal as I do, Awareness, nothing more, nothing less.

I have faith that these next 3 days will fly by and that, by Thursday, The Crazy Sock Clan will join forces for the greatest awareness event of the year!!  I have faith that more RSDers will start seeing their onset of RSD as a reason to celebrate their survival.  I have faith that I will continue to participate in other RSDer's Days when I am asked.  We all deserve our own Day, because we are all still here to tell our stories.  Please tell your story, but remember to do it with respect!!

3 DAY UNTIL CRAZY SOCK DAY 3!!!  ARE ... YOU ... READY??????

Crunch Time

We are officially 1 week away from the 3rd Annual Crazy Sock Day!!  Or, as we promoters like to call it, Crunch Time!!  Time to put the event out there for more than just the networking sites!!  It's time to get prepared!!  It's time to get the visuals into the hands of the media, the schools, hospitals, medical offices, law offices, insurance offices, civil servants, favorite restaurants and bars, ANYWHERE that we can get word out about CSD3, now is the time!!  

It's also the time for me to step outside of my comfort zone in order to make it happen.  It means venturing outside the confines of my warm, secure bubble, and doing it solo.  It means shaking hands with strangers who aren't aware of how painful a handshake can be while still smiling and spreading awareness.  It means putting on my bravest face amid high anxieties.  It means heeding the pain, but forcing myself to fight through it for the good of the cause.  It means having a constant supply of nausea pills and crumbled up Ritz crackers stashed in my purse.  It means getting meals cooked, put together, and frozen so that I can eat next Thursday, Friday, and possibly Saturday (Fri. and Sat. being potential recovery days).  It means getting my house organized so that I have all of my CSD3 stuff in the same place, while still being able to either sit or lie down comfortably.  It means making sure that I get my normal 4-5 hours of interrupted sleep every night so that by next Thursday I have a plethora of spoons in my arsenal.  It means getting creative and going shopping for Houdini's birthday present this weekend (his b-day is the 23rd, and it's a big'un).  I was supposed to travel to KC this week too, but my little "cold" has kept me quarantined and I have a lot of catching up to do.

Why do I do this to myself?  Because I learned my lesson last year!!  I did not get up from the kitchen table for 5 hours at one point (that's where my laptop is).  The Smiling Warrior was in surgery and I was hellbent on making sure that every pair of socks that crossed my computer screen were sent her way.  And that was with approximately 500 participants.  We're already at 1300+ for this year, and I don't want to miss a sock!!  I will be transferring every picture that comes my way onto a flash drive for safe keeping so that I won't miss anybody's socks this year when I make the 2013 slideshow.  This is the event/star to which I've hitched my awareness raising wagon and this is the event that I will fight for, tooth and (broken) nail.

At this point, I'm relying on my autopilot to kick in during the afternoons and evenings.  I can keep myself distracted for the better part of the day, but when the fatigue starts to set in, I'm screwed.  Unless I have someone present to talk and laugh with me and help me keep my focus, it is almost impossible for me to distract my brain away from the pain and aches of RSD at night.

I have faith that I will get through this next week and CSD3 will be a success!!  I have faith that I'll set aside time to recover from the event before my ColoAngel takes me up into the mountains to play in the snow for my birthday weekend.  I have faith that this will be THE  awareness event of 2013!!!  Move over pink and red, here come ORANGE AND GREEN!!!!  Got your socks yet??