I Blame Basketball!!

I started out in life as a tomboy, studied to be an athlete, and excelled to the honorable rank of "coach".  Sports is just a way of life for me ... period.  I have an athlete's mentality to keep pushing through the pain and the coach's mentality to stop when I know that I've pushed too much (um ... usually).  Put them both together and you have, what I like to call, jock-brain!!  I really do believe that this was the universe providing me with the Basic Training for my destiny with RSD.  

One of the most painful things to do, while living with RSD, is stress out!!!  And it doesn't matter what the reason is for stressing, stress always makes the pain worse.  I wish that I could say that I have a physical reason for this extra pain today (morbid but true), but the truth of the matter is that it's March Madness and most of these basketball games have put my knickers in a twist to the point of it manifesting into physical pain.  Woo Hoo!!  Yay RSD!!!  (can't you just hear my sarcasm dripping??)

Let's see if I can find an accurate way to explain this to the Normies ...

Imagine a frayed, downed power line.  You know how the electrical current causes the wires to flop and fly all over the place?  And you know how everything to which the exposed electricity comes into contact gets fried?  Well, imagine that that downed line is inside your body, flopping and flying around.  Everything that the electricity bounces around and hits, ie: muscles, veins, skin, tendons, joints, bones, and organs get zapped.  It's shocking, it's jolting, but it bounces around and usually doesn't stick around in one area for very long.  (Remember, I'm a Full Body RSDer.  For those who are only affected in 1 or 2 areas, there are not many other places for the downed line to flop.)

Now factor in any amount of stress.  For this explanation, I am using the benign (haha) example of being a sports nut.  (I consider things like life, death, health, money, school, and work to be malignant examples.  But I'm really not in the mood to completely freak out the Normies, so I'm going with the "benign" example.)  When a person begins to stress, they tense up their muscles ... RSDers are no different.  Tensing up is like someone stepping on the downed electric line.  The taut part of the line is controlled but the excess is still flopping around.  For instance (because this is what's going on inside my body right this minute), like I said earlier, I am a Full Body RSDer.  When my downed line flops, it can bounce around into both legs, both arms, my back, my tookis, my hips, my shoulders, my neck, my organs ... anywhere!!  When I stress, I tense up and the downed line gets pinned to one area.  Today it's my right lower leg.  The normal aches and burns are still present everywhere else, but the zapping becomes contained to my leg.  There's less room for bouncing around in my leg than there is in my body, so the downed line flops, flies, hits, and zaps at a faster rate.  It's annoying as $%&*!!!  (sorry Mom!!)

And today I blame Basketball!!!!!!!!!!  There have been some upsets that have done way more harm than just upsetting me!!  Gonzaga ... really???  I had you guys going to the friggin finals!!!!!  Georgetown ... seriously???  Who in the sam-hill-heck is Florida Gulf Coast??  Indiana, what in the hell happened to you??  Miami ... you were not the team that I'd heard raves about all season!!!  Buffs, you know I love you but I was dumb and picked you to go to the Elite 8 because my heart wanted it!!  My only saving grace right now is the team of whom I've been a pretty hardcore fan since 1973, because that's my earliest recollection.  I was 4 and my mom, my dad, and I lived in Lawrence, Kansas ... 3 blocks from the KU campus.  When I was 5 my parents took me to the Big 8 Championship in KC.  I fell in love with the sport on that trip and I have been a March Maniac ever since.

I hate what stress does to my body, but I love sports!!  Since I can't have one without the other, I have to pick my battles, so I have chosen NCAA Basketball and Football, Professional Football, and Volleyball.  I chose to give up the NHL, the NBA, Golf, Soccer, and Baseball.  Don't get me wrong, I'll still go to games or matches and cheer for my faves, but I won't stress out about it or watch it on tv.  If, at some point, I choose to pick up one of my deleted sports, I'll have to sacrifice one of my already chosen sports.  It's hard to change gears, but I've done it before, I can do it again!!  (I traded the NHL for NCAA Football 12 years ago.)

I have faith that as soon as I'm done posting this blog, I will curl up on my sofa surfboard and wrap my leg in heating pads to try and ease those muscles that have pinned down my internal downed line.  I have faith that by the time the Jayhawks take to the court tonight, I will have controlled my pain levels so that I can hop around and scream at the officials and throw tantrums if/when the boys miss their 3's.  I have faith that Withey will provide me with some blocked shots that send me jumping for joy.  I have faith that as soon as March Madness is over is I can focus on my upcoming bi-annual Ketamine nerve blocks in April.  And I have faith that my jock-brain will continue to benefit me in my constant battle against the beast that is RSD!!

A New Level of Understanding

Ok, I kinda get it now and I must admit that I really don't like the feeling.  For the last 21 years, I've been able to relate to other RSDers.  For the last 8 years I've been able to take a caregiver's perspective into consideration when my pains flare.  As a single adult living alone, I can hide my bad pain days, for the most part.  No one is compelled to watched my writhe in pain.  No one is forced to listen to me gasp, cry, grunt, or scream out in pain.  Whereas it is a very lonely feeling, I just can't bring myself to project these aspects of my life into someone else's life.  I feel helpless enough without imposing that helpless feeling onto another caring individual.  But after Munchkin Nanny Duty yesterday, I now understand(ish) the helplessness that caregivers experience.

I love the Munchkins more than I can put into words!!  Because of my RSD, I was unable to have children of my own.  These two 3 year olds have filled a void in my heart.  When they're hurting or sick, my heart aches.  When they're chatty and informative, my heart soars.  And when they fall out bed on my watch, get a bloody nose, and scream bloody murder, my heart breaks. 

That's what happened yesterday.  The 3 of us had had a blast playing basketball, playing with bubbles, playing with trains, playing games on my iPad and iPhone, watching a movie, playing Karma Restaurant (where they don't take my order but serve me what I deserve ... usually plastic cupcakes and cookies), and going out to lunch with a kidnapped Grandpa.  (Aunt Jenn likes to promote the classic movies whenever and wherever she can.  Yesterday our movie was Bright Eyes with Shirley Temple.)  The Princess renamed Good Ship Lollipop, "The Whipped Cream Song."  The twins begged to watch that part 3 more times (which falls right in line with, "... eat 3 more bites") before they went down for their naps.  I didn't have a problem with that at all!! ;) 

Da Gurl crawled into her small bed in the room that she shares with her brother when they stay at Grandma and Grandpa's house.  I tucked her in with Penelope The Doll, kissed her nose, told her I love her, and wished her sweet dreams.  Since naptimes are iffy in our world, and since there are 2 of them, their afternoon sleeping arrangements have to be separate.  So I took C-man into his Mommie's room and hoisted him up on her "big bed."  I tucked him in with his "griraffe," kissed his nose, told him I love him, and wished him sweet dreams.  I was lying on the couch in my parent's family room, watching some yard remodeling show that I don't get at my house when, all of a sudden I heard a floor-rattling <THUNK>!!

C-man had fallen out of bed.  I ran to him to find him face down on the floor, next to the bed, in a puddle of blood.  I scooped him up and dashed to the bathroom.  (Yes, when the situation calls for it, this Crazy Cripple can dash!!)  There was blood all over his face, hands, shirtsleeves, and my pullover.  With all of the tenderness of Mother Teresa, I cleaned him up.  My heart was broken ... right in half ... possibly in thirds.  I couldn't dry his tears, they were pouring out too fast.  All I could do was hold him, kiss his head, whisper "shhhhhhh" over and over against his cheek, rub his back, stroke his hair, and when the sobs would subside, I'd try to offer him a distraction.  (yep, that usually led to more tears and wailing) ... He finally asked to watch "the airplane movie" again (Bright Eyes) and agreed to drink a bit of water.  I was helpless.  It was a bloody nose.  A pain that I was unable to fix.  There was nothing that could be done, except what I was already doing.  Ok RSD parents and caregivers, I get it now!!!  And it SUX!!!!

There was the guilt of it happening on my watch ... but it could have happened on anyone's watch!!  There was the feeling of shame that I'd have to tell my sister that one of her kids was injured ... was she going to blame me and tell me I could never babysit again? (dumb thought, I know this ... it was only a fleeting thought, but it did cross my mind.)  There was the guilt that C-man was looking to me for comfort and to take his pain away, and I couldn't do it and I felt like I was letting him down.  And then when his cries woke his sister, I felt guilty because my lap wasn't big enough to hold them both.  When she asked for a snack, he cried when I tried to put him down.  When he asked for a snack too, I really thought the worst was over ... until he cried because it hurt to chew.  It finally came down to the distractions of the games that I have loaded my iPhone and iPad for them.  After 2 hours of experiencing complete helplessness, I was, for lack of a better word, 'rewarded' by his giggles while playing one of the PBS Parent games.

I have faith that the Bombshell will let me babysit again.  I have faith that this won't be the last time that tears are shed over boo-boos on my watch.  I have faith that when push comes to shove, my crippled body can move to protect, rescue, and/or comfort those that I love.  I have faith that the parents to whom I can now relate,on a certain level, feel their "rewards" with an ever deeper sense of appreciation than I feel.  It's nobody's "fault."  It's life.  It happens.  All we can do is try to make the best of the bad moments with a lot of TLC ... and a little forgiveness of self too, because there are way more good moments out there to be had ... together!!!      

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!!