Halloween, Crazy Cripple-Style

As a kid, teen, and young adult, Halloween was my absolute favorite holiday!!  I loved all of the decorating we did at the house when I was little.  It wasn't elaborate, gaudy, or really gory, but it was fun, crafty, and homey.  We would put Kleenexes over of Tootsie Pops, tie yarn bows at the sticks, put ghost faces on them and hand them out to the trick-or-treaters.  As an older kid and teenager, I lived for haunted houses, hay rides, corn mazes, and creating my own costumes.  We would set up haunted houses in our basement and then, after we moved to the farm when I was 12, we started hosting them in the old barn.  Peeled and oiled grapes to feel like eyeballs.  Cooked and oiled spaghetti to feel like intestines.  Chilled and oiled a whole head of cauliflower to feel like a brain.  Using old stuff we found in the tack room of the barn, we made torture chambers.  We'd have a costume ball in the barn loft, and then we'd have a huge bonfire in the old corral.  When I was in college, I didn't give a crap about anything but the parties (sad but true story).  The rest of my Halloweens have been hit and miss, courtesy of RSD.  Tonight my damn disease will celebrate it's 21st Halloween.  This morning I began reflecting on how I've had to change to my life so that I can still enjoy my, now 2nd, fave holiday.  (A very close 2nd behind Independence Day.)

Haunted Houses, Hay Rides, Corn Mazes ... yeah, those are all out.  Gone.  In the history books.  Since I can't control the actions of other people, having someone touch me unexpectedly (be it a ghoul or a friend) is just bad news for all involved.  It causes me a sudden spike in pain and I physically lash out as a reaction.  I have broken people's noses, bruised their ribs, given a few black eyes, and, I have also not gotten called back for a couple of 2nd dates.  The last time I went on a hay ride I was 25 and only my right hand, arm, and shoulder were affected by RSD.  It took me 3 nerve blocks (without Ketamine) and a whole month to recover from all of the jostling.  Now that I have the monster in my whole body, I don't even want to try to think about the recovery efforts that would be needed if I tried it again.  As for Corn Mazes, it's a combination of the previous two activities.  Don't touch me, don't jostle me ... without my permission, that is.

I have always had creative costumes though.  Only once did I actually buy an entire costume (It was a ridiculously warm Halloween and I opted to be Nefertiti since I didn't have to cover up body parts to combat the Colorado cold.)  My Mom, being the resident "expert" seamstress and former Kindergarten teacher, has proved herself to be a huge asset for me in the "cute costume" category, the rest were all my own creations.  All in all (that I can remember, anyway), I've been a pumpkin, a gypsy, a black cat, the Ace of Spades, Reeces Peanut Butter Cups, Marcel Marceau, static cling, a bag of chips, a dead Nebraska football player (complete with buffalo hoof prints on the chest), Tippy Hedron from The Birds, a bull rider, Joan Jett, an albino Nubian princess (I never said that my costumes were all PC), a zombie devil, Morticia Addams, a zombie mermaid, a sexy librarian, Little Red Riding in the 'Hood, a fallen angel, and last year I was Coach Sue Sylvester from Glee.  Yes, I am one of those that hands out candy to trick-or-treaters wearing a costume.  (and I always give bonus candy to the kids who make their own costumes!!)  This year, due to all of the recent hand-me-downs that I've received from her, I'm dressing up as my sister, the Bombshell!!  (shhhh ... don't tell her!! She doesn't know yet!!  But I'm gonna hafta pad my flat butt and boobs a bit ... heh heh)

Last night I carved 3 pumpkins.  2 for me and 1 for my folks' house.  This is one thing that, regardless of pain levels, I absolutely have to do ... for my soul!!  If, for whatever reason, I am unable to hold a knife or my mechanical carving tool, all I have to do is call my Dad or my brother, Houdini, and one of them always comes to my rescue.  But last night I did it all by my little own self.  There's The Screamer, Frankenpumpkin, and Mater the Friendly Ghost.  I have a sign in my front yard that says "The wicked witch lives here" and I have purple-ish/black lights strung up in my front window.  I found a neat idea on Pinterest to cut eye shapes out of used up toilet paper rolls and put glow sticks in them so I can hide them under my front bushes to make it look like creepy creatures.

See??  I can still have fun on Halloween!!  Granted it's not the kind of fun that I used to have, but I have accepted that it's "different kind of fun"!!  I have faith that I will enjoy Halloween 2012 (Kiva, not so much).  I have faith that I will continue to find ways to have fun without causing myself undue pain.  I have faith that when I awake in the morning I will ready and raring to go for International RSD Awareness Month!!  So please, don't put away your orange stuff after tonight!!  Keep the Orange alive for the whole of November!! Monday November 5th is International RSD Awareness Day, so make sure you're wearing orange!!  And ... if you wouldn't mind, wear an orange awareness ribbon with your favorite/familial RSDer's name on it.  (easy peasy to make, just go to your local fabric store for a small length of orange ribbon, a pin, and grab a Sharpee!!) HAPPY HALLOWEEN, Y'ALL!!!

From 1 to 100 to 16 ... BOOM!!

<dunt dunt duuuuuuun> One more day until my Ketamine nerve blocks!!  I'm excited for how I will feel by the end of the weekend!!  (yes, I realize it's only Tuesday)  However, the anxiety that precedes the next 4 days is beginning to take it's toll on me.  Even though my procedure only takes about 3 hours, recovering from all of the anesthesia and injection spots is rough, and my recovery rate isn't what it used to be (ugh).  The good news in all of this is that my doc was able to authorize another refill of my Ketamine nasal spray (4%) yesterday and I was able to get 6 hours of normally interrupted sleep last night.  I'll take it!!  It's amazing how sleep can calm the nerves, isn't it?  Today I will finish getting my house picked up (not cleaned, I don't have enough spoons), my elastic banded sweatpants, crazy socks, and uber-soft long sleeved shirts washed and dried (no folding or putting away ... again, not enough spoons.), and my sofa surfboard padded and prepped for my bony butt.  HUGE shout-out to my ColoAngel for leaving her hubby's side for a night to come take care of me!!  And another shout-out to my Jenn-Porn Dealer for offering to be our backup caretaker!!  I really do have the best friends on the planet!!

But in bigger news ... 100 days until Crazy Sock Day 3!!!!  Time for the Warrior Mama, the Penguin, the Sassy Warrior and myself to get to work!!  Well ... sort of.  First, we must brainstorm!!  I went ahead and started a Facebook event page, 3rd Annual Crazy Sock Day, to get the ball rolling. (Feel free to join!!)  I'm also thinking of starting an awareness community page for crazy socks.  It will not, I repeat not be a support group page or a page where people can pose questions and share treatment options.  This will strictly be an Awareness page where we can post pictures of socks year round to show how we're making this invisible illness visible. Trust me, if I do start the page, there will be absolutely NO drama allowed and all drama queens (and kings) will be booted if they try to make the page what it's not. <steps off soapbox>

If you, the few loyal readers of mine, have any suggestions for this year's event, please feel free to leave your suggestions in the comments below or send me a message on FB.  Last year we doubled the participation of the 1st year.  This year I hope to triple what we did last year.

We are also 16 days away from the start of RSD Awareness Month (November).  Time to dust off your orange ribbons (and socks) and get the word out ... RSD EXISTS!!!  Sheesh, what a busy fall and winter I have ahead of me!!  But I am only 1 person (with multiple personalities, of course)!!  I can't do this alone.  I need help!!  Your help!!  Help me/us spread awareness for RSDers worldwide!!  Wear orange, wear crazy socks, post your pics!!  The more awareness we raise, the more funding we can get for research for a cure!!

I have faith that I will survive tomorrow and, hopefully, by Saturday, I will be ready to kick oostakaka and take names!!  I have faith that CSD3 will be the biggest awareness event to date!!  And I have faith that RSD Awareness Month will burn brightly with orange!!  We will not go gently into that good night, we will rage against the dying of the light!! ... now, where'd I put my bullhorn??

From the Desk of Kiva The Tattler

Hi-ho!!  Kiva the dawg here to tell on my Mommie.  She's sick, or doesn't feel well, or something.  If you know my Mommie, then you know that she forces herself to go to bed every night and she forces herself to get out of bed, and stay out of bed during the day.  Ever since I've had her as my Mommie, she has done this.  Even when she's sick or in an abundance of pain, she still makes herself get out of bed and go to the couch.  But this morning she went back to bed at 7a.m.  She hasn't slept much for the last 2 nights, so I did my duty and laid down with her in the hopes of offering some comfort.  I woke her up at 8:30 when I heard her phone ringing in the other room.

I have seen her stub a toe, break a fingernail at the quick, bump her funny bone, knock her knee, slip and fall, and I even seen her fall off a chair.  She screams, she cusses, she crawls back to the couch, she medicates, and she copes.  Very very rarely does she cry.  But for the last 3 days, it's been different.  This pain is on her insides.  Saturday she thought it might be a kidney infection or a kidney stone.  But yesterday afternoon the pain had subsided for the most part ... until we went to bed last night at 9:30.  Then it jumped from her left side to her right side.  I couldn't even get on the bed to tuck her in because she was repositioning herself every 30 seconds trying to get comfy.  But it never happened.  She got up at 12:30a.m. and watched a Decoded marathon from the couch.  At 4 she tried to go back to bed again.  At 5:30 she finally gave up and got up.  Even Flo, her new coffee maker, wasn't awake yet.  You never ever ever wanna hafta watch my Mommie wait for coffee in the morning.  She turns from Frankenstein into Godzilla in .003 seconds.  Add to that the fact that she doesn't feel well and ... let's just say that it would be more pleasant to be an observer of a horrific train derailment.  At this point, she claims that it's just pain.  She has no fever, no trouble going to the bathroom, and no discoloration of her urine ... just knife twisting pain in her lower back that she knows is not RSD pain.

The RSD pain, however, has her terrified of getting into a car.  So she won't go to the doctor or to the ER.  She has finally gotten most of her flares under control and does not want to reignite them.  I don't blame her, but a car ride would have been fun for me <sigh>.  Mommie's Mommie brought over some cranberry juice this morning and Mommie opted for drinking that stuff instead of her 2nd pot of coffee.  (This is how I really know that something's wrong.)  Later this afternoon, Mommie's Mommie will go get her pain meds and drop them off too.  Whew, Mommie's lucky that her folks got back from their vacation when they did, or she'd hafta do all of this on her own.  Poor (but fortunate) Mommie.

I have faith that Mommie will get better.  She only has 9 days left before her Ketamine blocks and then she can focus on recovering and Halloween ... and Club Volleyball!!  I have faith that she will turn to me for comfort and I have faith that I will be there for her when she does.  She's the only Mommie I have and I must take care of her.

Yesterday I Cried ... Twice

If you know me, then you know that I don't usually cry over physical pain anymore.  I suck it up and deal.  But if you jerk on my emotions, you're gonna see a waterfall.  Yesterday I cried ... Twice!!  No joke!!  The 2nd time was because the "A" Team girls pulled out a beeeeeautiful win in their 1st playoff match in the history of the school.  I was so proud of them (and Houdini) that I just couldn't contain my emotions!!  (I'm hoping that I didn't cuss, but I'm not sure.)

But the 1st time that I cried yesterday is what still has my heart reeling.  I was just finishing up in the Ziggi's drive-thru on my way to school when I got a text from Chez (the sweet face that coaches with Houdini and me.)  She said something about a poem that brought her to tears.  I asked her what she was talking about and she told me to check my email.  So I drove about a block and then pulled over to check my email on my phone.  It was an email from the dad of one of my "C" Team girls.  Apparently she had a poem assignment for her 6th grade Language Arts class a few weeks ago, and the topic for her poem was ... um ... me!!  The dad prefaced the poem by telling me that his daughter has no idea that he was sending it to me so I have to go around pretending that it didn't happen.  Seriously??  Ugh!!  But because I love her so much, I am willing to play dumb!!  <sigh> Ok, here goes....

My volleyball coach

Although she yells and screams and scolds,
Inside she has a heart of gold.
She pushes us to do our best,
And puts our volleyball skills to the test.
She tells us constantly to move our feet,
So we can be true athletes.
She loves us all,
We love her back,
She knows what were good at and what we lack.
But All the time something inside,
Hurts her but still up she climbs
She gives everything she has for us,
that shows she's really selfless.
She doesn't sit, she doesn't give up,
She gives everything she has to us.
And with her help and all the rest,
We try to always do our best.
We won't lose,
Not today,
That's because we're PRA.

Her teacher had better have given her an A for that or that teacher and I are gonna go rounds!!

Yeah, I'm a blubbering idiot again.  I'd really like to be able to blame the cold weather that came in last night, but I can't.  I blame HER!!  ;) ... in the best possible way, of course.

Today I am down to 7 spoons total.  Our semi-final playoff match is 48 miles away but I only have to drive to the school and back home.  Houdini will drive me to and from the match (Thank God!!).  I still haven't showered, and I'm not entirely sure if I will.  I may just spackle my face and don a hat.  I really really hate RSD ... I hate cold weather ... I hate that my girls have to see this side of me.  But the fact that they recognize, to an extent, what it is that I go through for them humbles me.

I have faith that I will suck it up and deal today ... again.  I have faith that I will find a way to manage the few spoons that I have so that I can be fully present in today's activities.  I have faith that another trip to Ziggi's will help get my head right, which will force my body to follow suit.  I have faith that I will keep my friends close and my meds closer.  And I have faith that I will re-read this poem 2 or 3 more times, tears included, to remind myself why I do what I do!!  Painbedamned, I am a warrior, a fighter, a survivor, and a coach!!

Managing Spoons

The official countdown has begun.  2 weeks from today I get my bi-annual Ketamine Nerve Block Series.  Unfortunately, it's always the last few weeks before my blocks that are the toughest to manage.  Add to it the temperature changes of fall, the stress that accompanies Championship Week in volleyball, and the fact that we're supposed to get the "s" word anytime between tonight and Saturday, and I might as well not even get out of bed.  (My body is saying "snow on Friday night."  I am not amused.)  People have asked me why I don't get blocks more often and the answer is simple ... I hate them.  I hate how the drugs make my head and tummy feel.  I hate that I have to be knocked out for the procedure.  I hate that I have to get nine inch needles stuck in both sides of my neck, both armpits, both sides of my spine, and the inside and outside of both hips.  I hate that it takes me about 5 days to completely recover from this 3 hour "vacation."  I hate that parts of my body go completely numb and I hate that I have no control over them.  (seriously, you try sitting on the toilet while someone holds you upright because you can't feel your own ass and because of that, you fall over into walls, sinks, bathtubs, doorknobs ... it's pretty friggin degrading.)  So I schedule my block series every 6 months.  And twice a year, for a few weeks, I just have to suck it up and deal.

My Littles had their last match on Monday.  They lost but the B and A teams both won.  The "A" Team win gave us the home court advantage for the 1st round of playoff matches to take place today.  For me, this is a blessing and a curse.  (I'm about to do Spoon Math.  Are you ready? ... If you have no idea what I'm talking about, go tohttp://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ and read The Spoon Theory.)  Ok, I am only in possession of about 9 spoons today.  I have already showered, dressed and eaten, but I didn't shave, I only did the bare minimum on my make-up and hair, and I threw some leftover pizza in the microwave.  Cost: 2 Spoons.  I have to drive 25 miles to school, but I have access to the elevator once I get there, so that takes stairs out of the equation, but the elevator dumps me out in one of the middle school hallways where I get mauled and hugged by my favorite Littles.  Cost: 1 Spoon.  Then The Amazing Dad and I have to set up the net, bleachers, chairs, and ref stand.  Cost (even with his help): 2 Spoons.  ~this is where I am able to take one puff of K-Spray~  Between warm-ups and the match itself, I donate 2 more Spoons to the cause.  (Not only physical exertion but all of the emotional highs and lows as well.)  This leaves me with 2 usable Spoons for the rest of my day.  I still have to drive 25 miles to get home and I still need to eat, get into my pj's and put my pain riddled body in bed, which will gobble up those last 2.  Barring any unforeseen circumstances, I'd say that I've planned my Spoons out pretty well.

I have faith that I have done everything in my power to be present in today.  I am fulfilling my responsibilities and I am doing the 1 thing that I love most ... coaching volleyball.  I have faith that the Skank is going to try to mess with me as much as possible for the next few days, and I have faith that, regardless of what she does to my body, my soul and my spirit will both continue to soar.  I also have faith that it's entirely possible that I'm talking out of my oostakaka right now.  I'm trying to be optimistic, but, at the same time, I'm a realist.

Food For Thought

Ok RSDers, you've read about how I always try to be prepared for the worst case scenarios when it comes to my RSD, but now ... oi vey ... there is something that has recently been brought to my attention that I hadn't thought too much about in the past, outside of blockbuster movies and tv shows, that is.  I have never really fashioned myself as a Conspiracy Theorist, but what if ...

What if the Mayans and the Hopi are right?  As much as I would like to believe that the Mayans just ran out of rock to write upon, what if their prophesies are correct?  What if something happens on December 21, 2012?  Do I think it will be the end of the world?  Um ... no.  But what if something happens to the one thing that connects us and comforts us all on a daily basis?  What if we become cut off from from our friends and loved ones and medical personnel because the World Wide Web crashes indefinitely and we, the RSDers, are left with what's in our medicine cabinets, refrigerators, and pantries.  What if all of the things that hold us together at the seams become unattainable?  Would you be prepared?  How long could you last without your meds, your electric blankets and heating pads, your docs, your therapies, your support groups, or your treatments?  If we were suddenly thrown into a situation where we were our own first, middle, and last line of defense against the beast that is RSD, could you hang tough?  (I went through this back in 1999 as well, but my line of thinking has advanced and matured in the last 13 years to allow for the possibilities and the potential of success.)

I'm no prognosticator, but, if you know me, then you know that I do believe in being prepared.  That is why I am writing about this today, October 1, 2012 instead of December 20, 2012.  I'm not trying to scare anyone or throw anyone into an absolute panic, but what if...?  For me, I feel pretty confident that I could hang tough for a while, although I don't know that for sure.  I have already started taking action in regards to the herbs that I use most for fighting pain by testing my brown thumb.  I've decided that it's not black anymore since I've been able to grow herbs, fruits, and veggies for the 1st time ever, but my thumb is definitely not green ... yet.  Trust me, I'll get it there.  I have also decided to start stocking up on fabric softener, as well as my sock supply, K-spray supply, Lidocaine cream stash, and blanket supply.  I have my 2 Tupperware thingies of rice and beans for desensitization therapy and my therapy ball.  I hear that there are battery packs that you can buy for things that require being plugged in to electrical current, and that also means buying more batteries ... .. ... for my heating pads, you perverts!!  I have the remnants of my old camping gear for cooking, should the situation call for it, because you know I have to have my coffee.  But now I am stuck thinking about things like food, fuel, and drinkable water.  Seriously??  My brain is going there??  Not fair!!

I should be focused on my upcoming series of blocks on the 17th, how I'm going to get through all of the weather changes of fall and winter, and (duh) today's volleyball matches and the championship tournament at the end of the week.  But I sit here at my kitchen table looking around at everything in my house and asking myself, "Could I live without that?"  What if??

I have faith that I could survive something, for lack of a better term, apocalyptic, if, in fact, it does happen.  I have faith that I have enough time to gather my senses and wits (and a couple extra bucks) to come up with an RSD fighting plan so that if I needed to become fully self-sufficient, I could, even with my RSD.  There's more to being prepared than just making sure that you have enough of any given precaution for a trip to your treatment facility, a vacation, a trip to the store, a drive through the mountains or to the beach, flying, or going to events of any kind ... there is being prepared for the worst of the worst.  Just some food for thought.  I know this may seem morbid, twisted, pessimistic, and maybe even a little crazy. (consider the source)  But ... what if???