Fickle Fate

Do you believe in fate?  Every time I begin to lose my faith in fate (yes, you read that correctly) I get slapped upside the back of the head with it.  Yesterday was bittersweet in every sense of the word.  I awoke to the news of the passing of one of the most influential men in my life.  Thanks to "Coach" I was able to graduate with my high school class instead of being held back a year ... or 2.  Even though he was the wrestling coach, we all called him "Coach."  He was the Special Education Teacher and I can honestly tell you that I deserved to be in his 1st period class during my senior year.  He was the one who determined that I had a learning disability, and he was the only one who knew how to get me back on the right track.  He had my IQ tested, I scored in the top 2% of my class (if you know some of the people with whom I graduated, you'll know how high that really is).  My learning disability was "lack of motivation."  I was fine as long as it was music, english lit, history, psychology, speech, or phys ed.  My lack of motivation kicked in when it came to biology, chemistry, algebra, geometry, trigonometry, and showing up to class ... period.  Coach never gave up on me and gave me the building blocks for believing in myself.  And he also showed me, through his own actions, how to give of self.  I will miss his presence on this earth, but I will take some comfort in knowing that he is now back in the position to watch over all of us again.

Being as RSDer, my pain levels are directly affected by my emotions.  I was a train wreck of epic proportions yesterday.  Aaaaaaaand it was Game Day.  Forcing myself under the pelting needles (aka: shower) didn't help my situation.  I could barely get my arms above my head to wash my hair, and all of my clothes rubbed my skin the wrong way ... aaaaand it was Game Day.  I had hives on my face, and all of the veins in both feet were bulging ... aaaand did I mention that it was Game Day?  I slathered my body in Lidocaine cream and put on my brown cat suit (tight fitting capri leggings and tank top), followed by the only capri pants that could fit over the leggings and a cream colored, duster length, ultra soft cardigan.  I was still struggling to get my arms over my head, so I donned a brown plaid hat.  Over a layer of clear Benedryl lotion, I was able to put on the basic make-up ... powder, blush, and mascara, the latter of which I did begrudgingly due to my puffy and teary eyes.  I put on my brown wedge flip flops and put my signature mismatched crazy socks in my coach's bag to replace the flip flops as soon as I got into the school.  Pain (and emotions) be damned, it was Game Day.

I got to the school and went straight to Houdini's classroom, forgetting that 2 of my C Team girls were in his current Language Arts class.  As soon as I walked through the door, my 2 Littles came running up to me for their daily hugs <cue recently suppressed tears> and they told me that they were ready to win for a change.  Luckily the brim of my hat was pulled low enough that they couldn't see me cry.  Houdini, however, didn't miss my trick.  He herded me into the hallway to find out what was wrong.  After I told him about Coach, he asked me, "Why are you here?  Go home!!"  I replied, "It's Game Day and I need distractions." 

Here's where fate kicked my oostakaka ... As I was getting ready to head down to the gym to get it ready for our matches, a few members of the A Team stopped me to ask for my opinion.  One of the girls held out an armful of single crazy socks and asked me to pick her socks for their match.  Another girl said that a B Team girl had sent out an email to the whole team the night before reminding them to wear their best crazy socks for the matches.  Seriously??  I had just dried the last of my tears and snot from the previous emotional outburst!!  Gosh darn those kids!!  Okay, so I got the net up and tightened, the ref stand in place, the ball carts out, and I sat down to write out my starting line-up.  This was when one of my girls got a good look at my splotchy face.  She called the rest of our team over and I had to explain to my 8 girls that I had just lost a "Coach" and the tears came crashing down again.  This was the 1st time that the girls had ever seen me cry and I think it scared them a little.  I told them that I didn't want them to go out and play for the coach that I lost, nor did I want them to go out and play for me.  I wanted them to go out on the court and just have fun.  That was what would replace my tears with a smile ... And they did!!  They lost the 1st game but came back and won the next 2.  Our 1st real win!!  We didn't rely on serves to score points, nor did we rely on the other team's mistakes.  We volleyed for them!!  We talked on the court, we moved our feet, we called the ball, and they did what I needed them to do.  Make me smile.  After our 3rd game I was in tears again, but happy tears this time.  My girls were finally acting like a real team!!

Coach, 

I will miss you but I know you were there with me yesterday, I felt your presence.  I have faith that, someday, I will be to my girls what you were/are to me.  I have faith that you will always be that little angel on my shoulder telling me to have patience and reminding me to use what you taught me to benefit my Littles.  You were always one of the good guys!!

All My Love,

Jenn (aka ... Spaz)    

I am still dealing with the physical aftermath of my emotions, but I have faith that I will have the time later this week to deal with them appropriately.  1 more day of practice before the middle school girls go off for their Eco-Week adventure, so I'll get 5 days in which to get myself as right as I can be when I'm less than a month away from my bi-annual blocks.  I hate RSD, I hate cancer, I hate death, I hate pain, and I hate when I have no control over any of them.  But I love me, I love my girls, I love volleyball, and I love feeling the backhand of fate. 

The Price of Life

I hate money.  It freaking sucks!!  Don't get me wrong, I would love to have more, but the choke-hold that it has on my life is getting a bit out of control ... and old ... and a lot of people don't/won't/can't understand what I have to go through because of it.  Being on a severely limited, obscenely fixed income doesn't allow for any type of savings account, vacation fund, emergency expenses, nuthin'!!  My bills are barely getting paid (with a little help from my folks) and my refrigerator light only illuminates the baron, plexi-glass shelves.  I can't afford gas to go anywhere, and I can't afford ticket prices of any kind (plane, concert, ball game, event, you name it).  The brakes on the Buttmobile are beginning to grind a bit, and I can't afford to get them fixed or replaced.  Being a "volunteer" volleyball coach who travels approximately 50 miles (round trip) per day, on her own dime, doesn't help the empty wallet situation either.  Lack of money for the even the basic necessities causes stress ... which causes more RSD pain ... which adds to the stress ... which adds to the pain ... aaaaaand here comes fall and winter, birthdays and holidays, and cold and flu season.  FU RSD, for all that you have taken from me and for all of the priorities that you have forced me to reevaluate.

Pay for a plane ticket, or pay rent?  Pay for a full tank of gas, or put in $10 worth so that I can drive to the pharmacy and pay for my meds?  Pay for a ticket to a pro ball game or event + gas, or pay for groceries?  Spend spoons on one night out, or save spoons for volleyball practice and the 8 girls who depend on me (and the 21 other players and coaches who count on me)?  Pay for a birthday or thank you card, or pay for the extra water that I use everyday on the fruits and vegetables in my gardens?      

But you know what?  I'm still grateful.  I have a family that helps me out whenever they can.  I have dear friends that are always good for a giggle, a smile, or a leg up.  I have a dog that loves me, even on my worst days.  I have a roof over my head.  Thanks to the Bombshell, I have hand-me-down socks on my feet and hand-me-down tank tops on under my 13 year old robe.  Thanks to Houdini, my soul is filled with volleyball and a sense of being needed and appreciated for me, not just what I can do for them.

And there are things that I can afford!!  I can afford to be a friend.  I can afford to run my mouth raising awareness for RSD.  I can afford to love.  I can afford to crack jokes at my own expense (pun intended).  I can afford to stand up for myself and my beliefs.  I can afford coffee.  I can afford time.  I can afford hugs, even when they hurt.  I can afford to cheer someone on.  I can afford to share my experiences with those who ask.

I have faith that, although I am not wealthy in the monetary vernacular, I am a gazillionaire when it comes to being blessed.  I have my ultra amazing family.  I have Kiva, my ColoAngel, the Sweet Ones, the GingerFam, the Warrior Mama and the Penguin, my volleyball team, my porno dealer (hats), an adventurous friend through whom I can afford to live vicariously, my faith, a sense of humor, intelligence, and I even have a sense of peace.  Pain be damned, I'll pay the price for this life that I've been forced to create for myself, because life, in any sense of the word, is worth it.

Heart and Soul ... "F" The Body (sorry Mom)

What makes you happy?  I'm talking about the kind of happiness that brings joy, contentment, frustration, anxiety, panic, hilarity, relief, and excitement.  If you have children or grandchildren, you probably answered my question with their names.  But what if you didn't have any kids or grandkids?  What would make you truly happy then?  Your spouse/significant other?  What if you didn't have one of those either, what would make you genuinely happy?  Just think about it for a little minute ...

Thanks to my RSD and so many nerve blocks using fluoroscopic imaging and the bleeping x-ray machine, I am unable to have any children of my own, let alone grandchildren.  Hence my love, adoration, obsession, and affinity for Kiva, my niece, and my nephew.  But the latter 2 live 9 hours away and I only get to see them a couple of times a year.  Kiva is the rock on which I build my dreams ... But she's a dog, and there is only so much that a dog can do.  Human interaction is a necessity in life for all humans.  Divorce and RSD separated me from my spouse.  It was my decision and it was the right decision for me to make.  I am practically a shut-in for 7 months out of the year, unless I go someplace warm, so where do I go to find the kind of happiness that helps me to forget about my pain, puts a genuine smile on my face, lets me be goofy and crazy, and brings joy back into my life?

I'm an RSDer, a daughter, a sister, a sister-in-law, an aunt, a niece, a cousin, a friend, an advocate, a smart-ass, a realist, a woman, a broad, a lady ... and a Coach!!  In the last 20 years, every time I have tried to quit, retire, or take a hiatus, I have been miserable, depressed, in amplified pain, and a bitch to be around.  When I am able to shun the pain and discomfort and don the Vera Bradley lanyard with my coach's whistle and stopwatch on it, I am a reborn member of the human race.  Even if I'm not the "Head Coach," even if most of the girls on my team have never ever even touched a volleyball before they step onto my court, even if I don't get paid to do it, I am a Coach.  I belong with personalities that match my own.  I belong in a place where I can make a difference, even if it's only in 1 person's life.  I am a Coach and coaching makes me happy ... and it's noticeable to everyone in my life!!  I am not an individual.  I function best when I am a part of a team, regardless of the type of team.  When I am part of a team, I feel valuable and I have motivation to be an outstanding member of that team.  Whether it's with my family team, my team of friends, being in a relationship, working on a team to raise awareness for RSD, working within a team of coaches, or leading a team on the court, it's the "team" that keeps me going.

Yesterday at practice 2 of my girls got their underhand serves over the net.  Just one time each, but the shock and elation of both of those serves brought me to my knees with joy.  The mom that "bullied and accosted" me last week about the amount of running that I made the girls do instead of giving them skill training came up to me after practice and informed me that she had been working with her daughter ... and making her run when she would make a dumb mistake.  She told me that she had watched the whole practice this time and that the method to my madness was made evident to her.  She apologized and that mom got a high five from this coach.  Another mom takes her camera to every game, even if her daughter isn't playing that day.  She emails us coaches the pictures almost right away.  We have about 28 girls for 3 teams, and the stands have been full of black and yellow clad fans ... and that was just for our 2 away games that we've had so far.  The girls are starting to see what it means to be a member of a team.  I ... am ... happy!!

I have faith that I will forever remain "Coach."  Pain be damned, it's just who I am.  RSD, you may have taken the girl out of the court, but you will never take the court out of the girl.  Nice try, you bat rastard, nice try!!
    

Sometimes Avoidance Is Key

I have an aversion to folding and putting away laundry.  I have this large laundry basket bulging and brimming and spilling out clean clothes all over my bedroom floor.  I looked at it for a few minutes today.  Then I sat on the foot of my bed and looked at it for a little while longer as I tried to find the nerve to tackle it.  Then I laid back on my bed and stared hypnotically at the twirling ceiling fan.  I woke up an hour later and decided to write/blog instead of taking the chance that being in the presence of Apparel Mountain would render me unconscious again.

My couch still needs to be vacuumed, my dishwasher still needs to be unloaded and reloaded, the weeds in my gardens aren't going to pull themselves, and now I am forced to switch up my game plan for practice.  (Our school is still in the final stages of construction and the gym is being used as storage for things like desks, chairs, bulletin boards, tables, boxes of books, carpet, lighting fixtures, all things not conducive to volleyball.)  So ... there's a local-ish beach volleyball club that has been allowing us to use their courts when we can't get onto a regular one.  On one hand, I love it!!  Beach volleyball is just plain fun when you know what you're doing!!  On the other hand, it is not the foothold where one instills the initial skills needed to play the sport.  And on that same 2nd hand, I really don't enjoy finding sand "where the sun don't shine" when I get home.  If I were able to enjoy a beautiful ocean while embedding sand in hidden crevices, I wouldn't complain.  But this is Colorado, and until the San Andreas Fault collapses, there is no ocean.

Usually motivation isn't quite this difficult for me to muster, but I did a dumb thing yesterday.  It was totally random and to a Normie-Girl it wouldn't even register on pain or paranoia indexes.  While getting ready for our games yesterday, I was using my hair straightener because, really, you don't want me to not, and I pinched the ring finger of my right hand.  Right away the ring, middle, and pinky fingers started to flame and throb and turn red and ... wait for it ... I didn't even burn myself, just got a little pinched!!  The only telltale sign that there was an issue is a tiny little blood blister on the pad of my finger ... and it still freaking hurts!!!!!!!!  Honestly, I'm a little intimidated by my ability to do dumb stuff like that, and I'm afraid that if I get on a roll again, and start moving too fast again, I'll do something dumb again, and put myself into a deeper flare than the one I'm already experiencing.  FU RSD!!! I hate this bat rastard of a disease!!  I want my real life back!!  I want to not have to be paranoid of "possibilities" all of the damn time!!  <sigh>  ok, I feel a little better now, thanks.

I have faith that by the time practice is over tomorrow, it will take me the whole entire 3 day weekend to recover.  I have faith that I will spend my spoons on the girls and not my tedious household chores.  I have faith that I will continue to rifle through Apparel Mountain for clean clothes, and on the off-chance that I need something to be ironed, I have faith that I will spray it down with my water bottle and stick it back in the dryer for another round ... or 2.  (To the people that just called me "lazy," I salute you with my throbbing middle finger.  You couldn't tolerate half of the pain and discomfort that I deal with on a daily basis!!)

The Little Girl Who Cried Wolf

Last night was, for lack of a better term, brutal.  It had absolutely nothing to with RSD at the time, but the after effects are all RSD related!!  Kiva and I had our date night last night.  We had pizza, ice cream, took a walk, watched a movie, and we were in our beds by 11.  We had a great night!!!  The chaos began at 11:30.

Kiva had already tucked me in and had returned to her own bed.  I was just about to turn off the light on my nightstand when she started in with her guttural growl.  Before I could angle my body over the edge of the bed to see what she was going on about, the growl turned into a full blown German Shepherd "alert" bark as she sprang into a full run to the living room window.  I grabbed my machete (yes, I have a machete) from under my bed and quickly followed her.  I flipped the porch light switch to "on" and joined Kiva on the couch to examine our outer world through the window.  Nothing.  Not a cat, not a raccoon, not a burglar, not a lost drunk (yes, we've had those before), just silence and darkness.  I turned the porch light off and we returned to the bedroom.

By 12:40 my heart rate had returned to it's normal thumping and I was able to turn off the light and attempt to find some form of sleep.  At 1:45 she did it again.  It started with the low, guttural growl again, but I didn't hear it, I felt it.  At some point during that hour, she had rejoined me on my bed and had laid her head on my tummy as I slept.  Before I could roll onto my side to turn on the nightstand light, she launched off of the bed in full blown "attack" mode.  Machete in hand, I was hot on her heels.  I turned the porch light on again, joined her on the couch again, and, again, nothing.  I looked at her, scratched her by her ear, and said, "Spunkin, you have got to quit doing this!  Back to bed!"  The timer had turned off the tv in my room so I changed my bedtime movie and reset it for another 2 hours, not knowing if or when I would be able to fall back asleep.  I put the machete back under my bed and opted for a little iPhone solitaire to calm me down again.  The last time I remember looking at the clock, it was 2:30.

At 3:57 deja vu struck like lightening.  Kiva was already at the living room window and I can only assume (you know what that means) that her 1st intention was to check it out before she woke me.  Again I grabbed the machete.  Again I turned on the porch light.  Again I joined her at the window.  Again nothing!!  All of these quick movements getting out of bed were starting to cause a small skin flare that encompassed the right side of my body.  The nerve sweats started kicking in before I had even returned the knife to it's holster.  I turned on my ceiling fan, opened one of my bedroom windows, restarted the tv timer again, and Kiva was snoring on her bed before my head hit my pillows.

4:30.  Light off.  Still awake.  Playing solitaire.  Listening to my bedtime movie.  Let the growls begin ... again!!  I was about to scold that dang dog of mine when I heard a commotion through my open window.  Without turning the nightstand light on, I pointed to the bedroom door and told Kiva to "GO!!"  She unleashed the fury of her most relentless bark as she Usain Bolt-ed to the front window ... again.  As I was reaching for my very large knife (again) I heard something metal clank on the sidewalk in front of my house.  My heart began to hammer against my chest.  I could feel sweat on my forehead.  I was genuinely scared.  This time I also grabbed my phone and started dialing 9-1-1.  I flipped on the porch light, flung my front door open, brandished my pretty machete, and yelled, "What the hell???"  (Kiva was still growling and barking and trying to get through the front window, like she does with the mailman.)  In the time it took those 2 moronic males to say, "Oh shit!" Kiva had jumped over the arm of the couch and was literally standing on my feet, at the screen door.  The 9-1-1 dispatcher had answered and I informed her that 2 "men" were trying to break into my car.  Hearing all of the commotion on my end, she asked me if my dog was contained.  HAHA!!  I had to laugh.  The 2 idiots OJ'd back up my street and around the corner.  2 cop cars showed up, 1 stayed with Kiva and me and the other took off in the direction of fools-r-us.

Needless to say, I have been up ever since.  Very little sleep, stress induced skin flare, elevated heart rate, muscle spasms ... these things do not make for a happy camper.  But the correlation between my dog and the story of the little boy who cried wolf just makes me giggle a little.

I have faith that Kiva will continue to protect me and alert me when something is not quite right in our world.  I have faith that, although I have not heard from the police yet during actual daylight hours, they will catch the perps with the help of my descriptions.  One officer said, "You're lucky to have a dog like her."  I replied, "I know."

Happy Adrenaline Strikes Again

The half-pint in the black shirt: "She's weird."
The belle in the purple tank: "But she's funny."
The snarky little miss in pink: "I don't like her.  She doesn't do anything but talk."
The wide-eyed doe in yellow"  "um ... She heard you."
Me: "Why yes, yes I did." (and then I winked at the snarky one)

I absolutely love Day 1, after the butterflies flutter by, that is.  First impressions are so important in sports and it is at this time in their lives when they learn it ... aaaaaaand usually the hard way.  The only "competition" that most of these girls have seen has been sibling rivalry.  If you want to impress the coach, aka make the team, you don't take to the court passively.  You run.  You take every word, that the coach says, to heart and apply their words the next time it's your turn.  You don't roll your eyes at the coach.  When the coach asks a question, you reply enthusiastically.  And when the coach asks you your name, you don't turn to the girl next to you and have her answer for you.  Aahhhhhhhhh ... the joys of middle school volleyball.  (Let me go on record right now and say that I am so glad that I'm not the "adult in charge" this time around.  No busy work, just volleyball!!  ha cha cha!!!!)

Practice ended at 5 and the pain remained at bay until almost 9:30!!!  Happy adrenaline is a wave I wish I could keep riding, but RSD always brings me crashing back down to reality, at some point.  I was so exhausted that I forgot to take my bedtime meds until after I was already in bed.  As soon as I got up to take them, Kiva decided that she should probably go outside one last time ... to bark at the raccoons in the alley.  Aaaaaand then I was awake ... and so were the neighbors.  As soon as we got back in our beds, I remembered my meds ... again.   My body said, "screw it,"  the exhaustion took over, and I was asleep before Memphis Raines played "Low Rider."

My body decided I had to get up at 5 which did not coincide with my having set the timer on Bertha for 6:30 ... so I had to wait for my coffee this morning.  I'm not a fan of that.  It only took 3 hours for me to be able to walk upright and another hour after that I was able to talk myself into the shower. Cheers to volleyball season ... and remembering to take my K-spray!!!

I have faith that today's practice will better than yesterday's practice.  I have faith that the girls will learn and accept that I may be a dork, but I am the coolest dork that they'll ever meet.  I have faith that my body will continue to fight me, but my will is strong and I will keep fighting back every step of the way.  I have faith that, despite the exhaustion, I will remember to take my meds before bed.  I'll defo be needing more downtime during the season, but it will all be worth it as my heart continues to overflow with the joys of coaching volleyball again!!



    

Another One Bites the Dust

Three years ago I was able to cross something off of my Bucket List.  Two years ago I drew a line through another list item.  Today I get to cross yet 1 more thing off of that list.  It all seems pretty surreal to this RSDer, considering the nature of the main activity, but it feels so damn good to feel empowered to the point of acting on it.  

Three years ago, while I was the head coach (only coach) for 22 middle school volleyballers, my brother, Houdini, stepped up to be my assistant coach for our tournaments.  He took time out of his crazy busy schedule (getting his teaching degree and coaching a Jr. Varsity v-ball team at a local high school) to help me take 3 teams into two weekend tournaments.  I cannot begin to tell you how proud (and relieved) it made me feel to be able to walk into a gym with him and know that he had my back and would coach my B and C teams with the same principles that I used.  (After all, guess who he had for his first coach ... heh heh ... yup!!)  It was tough for him to have to "dummy-down" his skill levels for my girls, but he did great!!  I mean, there's a pretty big gap between junior high ball and junior varsity ball ... big gap!!  Huge!!!  But having him as my assistant coach got crossed off of the list, right then and there!!

Two years ago, Houdini and I played on a rec league volleyball team.  He always played to my left so that he could take the serves that were aimed in my direction.  Even with my RSD, I can pass, I can set, I can hit, I can serve underhand only, I can tip, but I cannot serve receive, serve overhand, or dive for a ball.  Towards the end of our season, our sister, the Bombshell, was in town with her family and she and her husband took the court with us!!  I played in a competitive match with both of my siblings!!  We lost 2-1 but I didn't care.  (That kinda pissed off the b-i-l, but...)  I was on cloud nine, having just done something that I'd always hoped to do, but never thought it would ever happen.  <BAM> one more thing crossed off of my list!!

To some, these might seem trivial.  To me, they were priceless!!  Being 12 and 14 years older than the Bombshell and Houdini, respectively, I was the one who taught both of them to play when they were very, very young.  I coached both of them when they were in high school, but we had never taken the court together.  When I contracted RSD in 1991, they were 10 and 8.  They watched me fight to be able to coach so that I continue to be in their lives.  Volleyball was our connection while the years and pain put barriers between us.

2 years ago I retired from coaching because of my health.  Today I come out of retirement and become Houdini's assistant coach for his charter middle school's inaugural volleyball season.  Now I get to have his back!!  I am scared, nervous, jittery (no, it's not the caffeine), excited, paranoid, and hopeful.  I feel genuinely needed for the first time in quite a while!!  He informed me last night that he now knows how I felt when I had 22 girls all by myself.  He's got 28 and a gal that he teaches with as the other assistant, though she's never coached a day in her life.  Houdini's exact words were, "Jenn, I need you.  I need you help me teach the basics, and help me transition down to this level."  How could I say, "no"??  It's volleyball!!  And it's my brother!!  And it's volleyball!!   

I had faith that this day would come!!  I didn't know how I would be able to respond to the calling, but I knew it would happen.  I have faith that I will help my brother to the best of my ability.  I have faith that I will fill the volleyball sized gap in my heart with these crazy kids and this wonderful sport.  Pain be damned, I'm coaching again!!  Can I get a "WOOT WOOT"?????