Now I Get To Do Some Stuff

Day 2 post-treatment and I feel like dancing around my house to Katrina and the Waves' song I'm Walking On Sunshine!!  (And don't it feel good???)  But I won't.  I am so not doing anything dumb yet!!  Spraining my knee the day after my last set of blocks back in October has me acting a little more responsible ... and a little more paranoid this time.  In all honesty, I haven't felt this great this soon after treatment in over 4 years, and I really don't want to blow it!!  I want to have an amazing summer and that has to start with a smart start to my spring and my spring starts now!!  The snow is finally gone and my little section of Colorado is back into the 60's with our sights set on the 70's this weekend.  My doors and windows are open, my ceiling fans are twirling, and I'm blowing out the stink of the last 4 weeks!!  I'm doing laundry (just the washing and drying part because folding constitutes "dumb" in my book) and trying to catch up on some writing.  Off to a smart start ... CHECK!! 

As much as I despise the way large doses of Ketamine make my head and tummy feel, the benefits that I get in the pain relief department and the eradication of my depression are enough to make me the damn drug's poster child!!  If you're an RSDer and haven't looked into some form of Ketamine treatment yet, I strongly urge you to start researching your possibilities!!  Take it from General Jenn, the 21+ year pain warrior, of all of the drugs that have been administered into my system, Ketamine has been my diamond in the rough!!

And now ... I get to make plans to do stuff again.  I get to look forward to stuff again.  And within the last 48 hours, I already have lined up some stuff ... some fun stuff ... some good stuff ... some awareness stuff ... aaaaand some other stuff, but I'll mix it in with some of the good stuff to create some balanced stuff.  YAY STUFF!!!

The most important of all of this stuff that I get to do is plan my awareness event and celebrate my 22nd anniversary of surviving Reflex Sympathetic Dystrophy on Saturday, June 1, 2013.  This is the day that I will have had this bat rastard of a disease for half of my life.  This is the aptly and duly named FURSDay!!  This is the day that I'll ask every single one of my friends to put something orange on their furbabies, take a picture, and tag me in it on Facebook.  This is the day when I will gather with the majority of my favorites and give the double middle finger salute while shouting "FU RSD" over and over (even in front of my Mom).  Because this is the anniversary of the day when my life was tragically altered just by slamming my thumb in a refrigerator door.  This is the celebration of 8,030 days that I didn't quit or give up, even though I desperately wanted to throw in the towel on some of those days.  This is the day when I will have fought against depression and anxiety for 192,720 hours.  This is the day I will have fought through the mind-blowing pain for 11,563,200 minutes.  (yes, I used a calculator)  This is my day to own!!  I may have full body RSD, but full body RSD does not have me!!  I may have to do stuff differently, but I can still do stuff!!  And this particular anniversary will be the day that I turn the page and begin a new chapter.  I have no clue what it's title will be or even what will get written on it's pages, but I can't wait to find out!!  

I have faith that I will continue to fight and celebrate the wins, even the little ones.  I have faith that I will use my renewed lease on life to do good stuff, for me as well as for the ones I love.  I have faith that I will keep walkin' on sunshine ... for the next 5 months anyway ;) ... HAPPY SPRING!!  GO DO STUFF!! 

Flare and Self-Loathing in Longmont

I have no one to blame but myself, and believe me, I tried to not to.  (Poor grammar, I know, but that was the exact phrase that exploded from my brain) This pop-reality tidbit was just the catalyst I needed to get the funk vacuum to finally spit me out yesterday ... own my painful mistakes, learn from my painful mistakes, and make a conscious effort to never repeat painful mistakes.  If this is any indication as to how icky, cranky, and grumpy I was and how much pain I was in, I couldn't even talk to my BFF!!  I honestly couldn't stand to be around myself and I wasn't about to inflict that piss poor attitude on anyone else, especially someone that I love and respect!! (So to my Mom, my Dad, and my ColoAngel, I love you ... I'm sorry ... I'm back!!  And to Houdini, thanks for the oostakaka kick during my Funk Fest. Brother, you're the only one that could have gotten away with it unscathed ... but beware of paybacks.)

I knew better.  With only 2 weeks left until my next treatment, and my body completely depleted of my last Ketamine infusion, I should have advocated for myself instead of allowing myself to be flown around by the seat of someone else's pants.  Cold, windy, snowy Colorado weather (we call it "Spring") brings enough challenges without me adding insult to injury by developing resentments from travelling the winding back roads of the Rocky Mountains for 3 hours, in and out of 4 different pressure systems, in a vehicle that lurched and lunged and vibrated.  I should have spoken up and offered a Plan B to a friend who was visiting from out of state, and also the driver, but I was happy to finally get to spend some time with him, so I didn't ... and I am still paying for it 5 days later.  This is me "should-ing" on myself. 

I am constantly telling other RSDers to stick up for themselves, to be their own best advocate.  I didn't do that and now I am the one who has to live with those consequences.  To try to expedite the pain induced funk, I met a few girlfriends and 1 husband for dinner on Friday night, but I was only able to get through the fried pickles appetizer before my body began revolting against my clothes, which caused the nausea to kick up, which caused my early retreat to the Chalet.  One of my girlfriends (we'll call her Mrs Claus since she lives in North Pole, Alaska, and cooks and sews like it's nobody's business) asked me a very valid question before my abrupt departure, "Can't you get treatments more often?"  The answer is anything but simple.  Yes, I could get my Ketamine Nerve Blocks more often than just twice per year, but I won't.  I'm only in the hospital (Day Surgery) for 3-4 hours every October and April, but it takes almost a whole week for me to fully recover from the procedure.  The dates are my choice and I am only willing to do it every 6 months.  For me, April and October make the most sense right now.  My October blocks prime me for Halloween, Thanksgiving, Munchkin Birthdays, Christmas, and my birthday.  My April blocks prime me for tornado chasing season, the Munchkin's summer break, tons of laughs in the out-of-doors with The Fun Folk, and shorts and flip flops.

What happens is this: My doc knocks me out with Ketamine and Versaid, and then he proceeds to turn my slight figure into a human pin cushion with injections of Ketamine into my central nervous system.  Yes, the blocks make my life livable again, but the time and effort it takes to recover from 12+ injections and a drug that makes my worst nightmare feel like a reality is just not worth it to me.  And this doesn't even take into account the fact that I abhor how Ketamine makes my stomach feel.  I'll probably lose another 3-4 pounds during that post treatment week. <sigh> This is my life and this is how I have to live it.  There is no truer phrase than "there is a method to my madness" when trying to explain to people how I do what I do when I do it.  I should have stuck to my methods.

I have faith that I will get through these next 9 days.  I have faith that once I've had my blocks and the side effects have worn off, I will be able to get back to living.  I have faith that I will continue to make mistakes that exacerbate my pain, but I have faith that I will continue to learn from them.  I am my own best advocate and I will speak up!!!!    

What Comes After "Tired" Again?

I'm tired.  Tired of always having to be so strong.  Tired of fighting the beast inside my body.  Tired of listening to the voices in my head.  Tired of feeling let down and forgotten.  Tired of not being able to sleep.  Tired of being the only person in whom I can trust, and sometimes that's a little iffy.  Tired of failing and feeling defeated.  Tired of always being alone.  Tired of the ever-looming funk that's just waiting for me to let my guard down a teeny tiny bit so that it can engulf me.  Tired of people who claim that they "get it" or want to "get it" but don't and/or won't.  Tired of being taken for granted.  Tired of trying things differently and still getting the same damn results.  Tired of people taking advantage of my spoon supply.  Tired of swimming in a size 2.  Tired of not being good enough.

I thought I had finally balanced the scales of karma.  I have accepted my RSD, I've turned my life around and I have stopped acting selfishly.  I don't hate, I won't lie, I do not judge, and I actively avoid drama.  All of these were conscious decisions that have become the core of my personality.  And yet I'm still unhappy.  I'm sober, I'm generous, I'm caring, and I'm no closer to true happiness than I was when I started making all of these life changes 8 years ago.  I feel as if my RSD is a real life Dementor.  (had to give a little shout out to my Harry Potter marathon yesterday) ... So now what??  What do I change about myself this time to try to find that elusive feeling of true happiness??  How do I go about filling the void??  (Ugh ... I resent letting the funk vacuum suck me up, but there was nothing I could do to stop it.  I let down my guard for 2 seconds and started to breath a sigh of relief, but then <whoosh> ... and now here I am, defeated and depleted ... again.)

Yes, I have made significant strides in my life.  Yes, I have overcome some serious obstacles.  Yes, I am still alive and kicking and able to tell my story.  Yes, I have a dog, parents, and siblings that love me very much and are proud of me ... finally.  Yes, I have created a few memories that will live in my heart forever.  Yes, I have volunteered and given of myself in support of others.  Yes, I appreciate the life I do have.  But now what??  How do I go about relighting the spark within me??

I have faith that I'll get over myself and kick the pity-pot out from under my bony ass.  I have faith that I will rediscover the inspiration and direction that keeps me fighting.  I have faith that this too shall pass.  I have faith that I will keep trying and failing until something finally clicks, no matter how discouraged I get.  12 days until my next Ketamine treatment to recharge my batteries ... and then I'll try ... again.

Don't Judge, It's Tweaked!!

Not often do my routines fail me.  Very rarely, in fact!!  But ... Monday night that insomnia thing found me again even after I followed my nighttime routine to a "T+"!!  I can't ever predict when those nights will occur, they just happen!!  I have to accept it, adapt to it, and move the hell on!!  (aaaaand allow myself time to nap continuously the next day) ... Most of my routines are tried and true.  Some routines are still in the tweaking stages, but every day is a new chance to learn new tricks, even at my age, it just takes time to apply them into an already developed routine.  Hey, life happens and things change, good and bad!!  I have to be able to acclimate to what life throws my way.  As a veteran RSDer, I have learned how to replace numerous pill bottles with routines.  (It's amazing how far I am willing to go to avoid taking a pill nowadays!!  Even a sleeping pill!!)  Over the last 21 years of doing this, I have tried a lot of tricks ... and I have failed more times than I care to count, BUT ... I have learned what works for me and what doesn't, and I have turned the tricks that work into routines.  Even if they seem dumb and pointless to others, trust me, my routines are solely comprised of "tried and true tricks"!!

My normal nighttime routine goes like this (um ... don't judge) ... 2 hours before I want to go to bed, I brush my teeth, take four puffs of my 2% Ketamine nasal spray, turn on the heated mattress pad on my bed, prep Flo for her morning ritual of brewing my elixir of the gods, and then I watch an hour of tv, usually a Disney movie, while I do a jigsaw puzzle on my iPad.  Upon completion of the puzzle, I turn on the heating pad that eases my ankle pain that's sandwiched between my top sheet and blanket on my bed, make sure all of my indoor plants are fed and watered (I'm attempting to grow veggies from seeds instead of spending a hefty chunk on my gardens again this summer), send Kiva out for her last yard tour of the day, smoke, and shut and lock all of my doors and windows (yeah, don't judge).  And then it's "pickapajama-time"!!  I have to figure out which of my pj's are going to be the most comfy against my skin at the time.  Usually it's a tank top and my soft linen (orange plaid) pants.  Then it's on to the less than fashionable scrunchy to keep my hair off my face while I sleep.  I make my final rounds of the house, pour a small glass of water from my kitchen faucet ('cuz I live in a town where the tap water is better than bottled water), double-check my door locking capabilities, turn off the lights and tv, and position my burglar traps (I said, "don't judge")  I take the comforter off of my bed, start a movie on my iPad (recently my bedtime movie has Sherlock Holmes' Game of Shadows), and then, and only then, can I get into bed with an unobstructed mind.  It takes me about 2-3 minutes to re-accustom myself to the rough texture of my uber-soft, flannel sheets. (RSDers will totally understand that one!!)  I grab my 4% Ketamine spray from my nightstand and as soon as I get 3 puffs in each nostril, Kiva jumps up to tuck me in.  I get kisses and a few cuddles before she hops down onto her own bed and then I play solitaire on my iPhone until I can't keep my eyes open any longer.  I'm usually asleep before Sherlock and Watson get to the gypsy camp and before I can turn off the light on my nightstand.

On Monday night both of my legs were extra achy and I was still wide awake as Holmes and Moriarty went swimming, even though my nightstand light was out and I could no longer focus on my solitaire cards.  My 2nd line of defense was The Aristocats and a double bagged cup of Sleepytime tea ... so up I got to nuke a mug of water!!  I unlocked and cracked my kitchen window and smoked as I worked on my biofeedback breathing while my tea bags steeped (ahem!! don't judge!!).  I took my tea to bed and opted for a little iPhone video poker. (the cards are bigger, less eye strain)  At 1 in the morning I could no longer handle the conscious feeling of my bed.  Being awake was making me more aware of my pain and I had had all I could take of my consciousness.  Soooooo I got up ... I turned off the heated mattress pad and the heating pad, and turned on the nightstand light. I gathered up my K-spray bottles, iPad, iPhone, and glass of water, and I plopped my oostakaka on my couch!!  I refused to let the insomnia work me into a flare, so I accepted my situation and pushed Flo's button to get her started on brewing my liquid crack.  If I was going to be awake, I needed my wits about me.  

Acceptance is really the only way for me to avoid those sleep-deprived flares ... which I can happily report happened yesterday!!  Around 6 in the morning, I was able to take my 1st nap.  Every time I woke up, I ate a bagel, checked Facebook, smoked (you're judging again), took a couple 2% puffs, answered a text or 2, and let myself drift back to sleep.  In the DVD player, I had The Avengers on repeat ... all morning long.  By the time I was ready for my 3rd nap (12:30 p.m.-ish), I was ready to hear something else other than "shwarma" and so I changed movies and put in Pitch Perfect (seriously, I told you a long time ago not to judge me).

Today I feel like I'm back to my old self  ... well, the one that's 3 weeks away from treatment anyway.  I'm still short on spoons, and my "normal" pain level is elevated, but my sarcasm is back, as well as a modicum of an attention span.  I have faith that my routines will continue to get me through the rough spots, whatever those spots may be.  I have faith that I can tweak my routines when I learn a new trick that I can use in my battle against RSD.  This is my life, I have to accept it ... and tweak it ... before I can make it better!!