And That's The Truth ... pppphhhhfffftttt

Today is May 31, 2013 ... What were you doing 22 years ago today?  Were you still in school?  Were you married, working and planning a family?  Were you just graduating from college and embarking on a life of whatever you could imagine?  Were you not born yet?  Do you even remember that long ago?

22 years ago today I was 22 years old, and it was a Friday.  I was working as a waitress and bartender at a restaurant called The Steak Out, I was racing my 1st season of motocross and prepping for Sunday's race, I was playing in a competitive volleyball league at the YMCA on Thursday nights, I had just signed a modeling contract earlier in the week, and I had a boyfriend ... I had my whole life ahead of me.  Life was goooooooood 22 years ago today!!!

And then the sun went down and I awoke to June 1, 1991.  I remember it all more clearly than I probably should ... I got up, I changed the oil and cleaned the filters on my Kawasaki 125, oiled my chain, got her washed and ready and loaded in the boyfriend's van for the races the next morning in Pueblo.  I showered and then got ready for my waitress shift that evening.  I packed up my race gear and an overnight bag into my 1977 Plymouth Volare so that I could drive south when I got of work at 10p.m. in order to be at the track and in the starting gates for my heat at 9a.m.

As I pulled into one of the employee parking spaces at 4:30p.m., the radio started blaring a Severe Weather Warning.  We were under a tornado warning for the next 4 hours which, in restaurant terms, meant that we would be "dead."  I remember thinking, "Cool!!  Maybe I can get out of here early and get down to Pueblo before midnight!!"  I walked in, clocked in, and got to work.  The other waitress came in at 5 and I asked her if she'd be ok with me leaving early if the customers didn't come in ... and she was!!  We each got 3 tables during the dinner hour and just after 6p.m. everyone everywhere, all over town, heard a <BOOM> and lost electricity.  A tornado had touched down at the cemetery in the middle of town, just 4 blocks from our restaurant.  It didn't stick around for more than a few seconds and the majority of the damage in it's wake was due to power loss.  But ... our kitchen operated on gas stoves, grills and ovens and we had a cellar full of canned beverages left over from our last catered event, so our manager (a big-city slicker) deemed that we would stay open, even though the rest of our small city had run for home to assess any other damages.  There was 1 table  between 6 and 8p.m. ... we had 1 table between 2 waitresses and the manager wouldn't cut me so that I could do my sidework and hit the trail.

7p.m. was when that 1 table, 2 people, came in to eat.  The other waitress was tending to the table and I had preemptively begun cleaning the waitress station.  She came into the station to get dinner salads and I took a break from cleaning to chat ... gossip ... bitch ... you know, the stuff waitresses do behind the customers' and managements' backs.  I was leaning back against the salad prep table which rested on top of a short reach-in refrigerator.  The other waitress bent down to open the fridge door for the lettuce plates and when she kicked at the door to close it, somehow ... some way ... my right hand had turned on the cutting table and my thumb got slammed in the magnetic strip of the slamming door.  I remember screaming ... I remember her trying to get the door open but couldn't ... I remember yanking my thumb out ... and I remember the immediate swelling.  I had played sports for my entire life, I knew it was a sprain and I knew I'd get over the pain ... I just needed ice and aspirin.

The manager, in that genius fashion of his, told me to cash out and take off since I was going to be no good to the restaurant for the rest of the night.  I wrapped a bag of ice around my right hand and drove to Pueblo ... I still had to race the next morning ... but couldn't because my right hand really hurt and I couldn't move my fingers due to the swelling.

Unbeknownst to me at the time, I had just contracted Reflex Sympathetic Dystrophy and my life was about to get turned on it's ear.  The pain didn't go away like it did with a typical sprain.  The swelling got worse, not better.  My whole hand had become ice cold and mottled.  Thanks to my father being a workman's comp attorney, I was able to navigate through the medical system fairly quickly (6 weeks) to get a diagnosis, but it has taken all of the years between then and now for me to finally be able to say (and mean) I have RSD, but it doesn't have me!!  Granted, I've said it for years, but to actually mean the words and not just go through the motions of meaning the words is where I see myself today.

I will have had RSD for half of my life as of tomorrow.  It may not seem like a big deal to most people, but it is a huge deal to me!!  I survived!!  I lived!!  I defied the odds!!  I have spit in the faces of the doubters and naysayers.  I have fought against nights of wanting to kill myself just to escape the pain.  I have fought against painkiller addiction and alcoholism.  I have tried running away, but wherever I've gone the pain has always been with me like an invisible freckle that burns.  I have endured the abnormal swelling, the color changes, the temperature changes, the tremors and twitches, the seizures, the burning heebie-jeebies, the internal electrical storms, the painkillers, the muscle relaxers, the seizure blockers, the protein powders, the jokes and disappointments expressed by family and friends at my expense, and the dumb, but heartfelt, suggestions of what I should do for the varying symptoms.  I've been called a liar, a faker, an attention seeker, a pill popper, an addict, and an alcoholic (ok, so that one was true).  I've been dumped, forgotten, excluded, and chastised because of RSD.  But ... I ... am ... still ... here!!!  I am still fighting!!  I am still living!!  And I am still loving!!  I AM A SURVIVOR!!  I refuse to be a victim, I refuse to let other people affect my pain, I refuse to let RSD keep me down, and I refuse to give up!!

June 1, 1991- June 1, 2013 ... 22 years ... My Golden Painiversary!!  I have faith that I will wake up tomorrow and shout, "F U RSD!!"  I have faith that Kiva will don her orange bandanna and boa to lead the FURsday festivities on Facebook.  I have faith that I will keep living and loving in spite of this damn disease!!  RSD has taken SO much away from me, but I have replaced those things with new and amazing people and activities.  It really is faith that gets me through each and every day.  Whether it's a good day or a bad day, my faith in tomorrow keeps me moving forward.  Fuck you, RSD!!  And um ... thank you for making me a better person and a stronger warrior!!  

Repeat After Me, "Coffee is Good"

This may surprise some of you, but I love coffee!!  I love the smell of coffee, I love the taste of coffee, and I love the energy boost that coffee gives me!!  What I don't love is how I get judged, questioned, and chastised by people who don't understand my affinity for coffee.  So now it is time to inform the uninformed and set the record straight.

Being an RSDer is a challenge in and of itself.  The pain, the ever morphing symptoms, the balancing of medications, and the restructuring of a semblance of a life is a daily battle ... and it's friggin exhausting!!  Normies, think back to the last time you were sick or injured.  You slept quite a bit, didn't you?  The drugs that the doctor gave you made you feel woozy and hazy, didn't they?  Your energy level was lower and it took time for you to heal and bounce back to your "normal" self, right?  Here's the deal ... there is no cure for RSD, therefore I do not heal, nor do I bounce back.  I need "spoons" to get through my day, and without caffeine there are no spoons available to me outside of an adrenaline rush, and I don't get many of those.  One of the biggest problems that an RSDer faces is movement of our affected body parts.  It hurts, dammit!!  But we have to move or we fall victim to atrophy and loose the use of an appendage all together.  In layman's terms, atrophy is when when a body part (arm, hand, fingers, leg, foot, toes) begins to turn in on itself/themselves from lack of use.  The muscles waste away and there isn't much hope of getting them to straighten out again.  Soooooo ... I've gotta move in order to keep myself at my own personal "normal,"  and that's where coffee comes into play for me.  It gives me the energy to move!!

Yes, I know that caffeine is a stimulant and I know that it is not beneficial to my central nervous system.  I am constantly informed by people, who think they know better than I do, that my caffeine intake is the reason that I don't sleep well.  Ahem!!  You ... are ... WRONG!!  For the most part, I do not have a problem falling asleep.  I am so exhausted from fighting pain all day that I pass out at night!!  Some nights it takes a little longer for me to calm the muscle spasms and skin fizzies so that I can sleep, but I can still fall asleep!!  It's not the caffeine that inhibits my ability to stay asleep either, it's the pain!!!!  All it takes is for me to roll over in my sleep and tweak an arm, or get a leg hooked on the other leg or trapped in the top sheet, or another spasm hits and a flailing body part hits a wall and I'm awake!!  If it's a mild "whack" I can usually get myself back to sleep, but if it's a major "whack" I'm up for good!!  Some nights are insomnia nights that have nothing to do with my caffeine intake and everything to do with my pain levels.  On those nights I try to stay away from the coffee until 3a.m. in order to give my body a little bit of time to rest and reset, even if there's no sleep involved ... but I'll hit the button on Flo (my coffee maker) right at 3 so that I can start gathering up my energy (spoons) for my day ahead.

Life as an RSDer is not easy, but life, in general, is worth staying awake for!!  When I was married, my ex-husband could not stand the smell of coffee.  It made him physically ill.  For those years, my coffee drinking was at a minimum and I slept 12-14 hours a day, on average, due to the pain and painkillers and muscle relaxers.  I missed out on a lot of life things, good and bad.  Since my divorce 5 years ago, I have been able to drink my coffee any time, anywhere, and I have missed out on very few life things in comparison!!  Some of my fellow RSDers have picked up on the whole caffeine/spoons connection and they clutch their cups every bit as much as I do, I just admit it more often.  Some of them drink tea or soda pop to get their caffeine buzz, I have opted for coffee.  I have been known to swap out my hot coffee for an ice cold Pepsi, but coffee is always my first choice, hot or cold.

My trips to my favorite coffee shop, Ziggi's, have been called into question as well, but for financial reasons, not caffeinated ones.  The answer there is just as simple ... No, I can't afford all of my trips to Ziggi's, but every few months my parents will give me a $20 Ziggi's gift card (I call this my Emergency Relief Fund) and most of my trips happen during the week after I get my Social Security Disability check.  You know, while I still have money!!  (FYI - I buy Folger's Black Silk coffee in bulk for my daily brews.)  For the other 3-4 weeks per month, I use my gift card or the free punch on my Ziggi's Punch Cards (I have a few saved up).  So I guess when push comes to shove, I really can afford my Ziggi's runs so the naysayer's argument is moot once again!! :-P

I have faith that I will continue to drink my coffee and advertise my need for it.  I have faith that my family and friends will continue to come to my defense when they hear other people question my "addiction" to coffee, because they know that my real "addiction" is to life things, not the coffee.  I have faith that my 2nd pot of coffee will taste every bit as good as my 1st and it will give me the strength, energy, and spoons that I need to get through my day.

 

You Reap What You Sow

Yesterday I finished cleaning out and tilling all of my flower and veggie beds.  Actually, I had finished both of the veggie beds in the back yard before the last snowstorm, but the long flower bed in front of the house was still blanketed with last fall’s crusty and membrane-y leaves, peanut shells and corn cobs that had been deposited there during the winter months by my neighborhood squirrel family, a few scattered weeds that thrive in the muck, large and small twigs that had blown down from my big wet-rotted tree, and the dead stems from last summer’s snapdragons.  There was enough crap in that 17’x1’ section to fill a lawn and leaf trash bag ¾ full. 

As I sat down in one of the Adirondack chairs on my front porch to bask in the satisfaction of my work and mentally plot out this year‘s arrangements, Houdini pulled up and got out of his car.  He skulked his 6’4” frame up the walkway and slumped into the chair opposite me.  My brother has recently begun dealing with his own “invisible issues” and knows that when he’s feeling defeated by them he can come to me for empathy, validation, and/or an emotional boost.  Our “issues” are different, but pain is pain.  He knows that I won’t compare my pain to his, nor will I cut him off to interject anecdotes of my own (unless he asks).  I won’t tell him what to do or how to feel (unless he asks).  Don’t misunderstand me here, I am definitely not saying that I don’t want to chime in and cut him off and tell him what to do and how he should do it.  I’m just saying that I am pretty dang conscious of how angry and frustrated I feel when other people do that to me, so I try not to do it to anyone else.  I’ve been angry and frustrated enough after fighting this daily battle against RSD for 20+ years without someone else trying to minimize what I feel by telling me that they know exactly how I feel or that they feel worse.  Everybody feels pain and everybody feels pain differently.  Some of us have just have more experience coping with pain and are therefore better equipped to deal with others who are in pain.

For 15 minutes he vented and I listened. Just getting stuff off of his chest was all that he needed to clear his head and devise a logical plan of attack. I complimented him on being able to sort things out before reacting this time and reminded him that he was doing the right thing.  He looked over at me, sighed, smiled, and said, “Thanks, Jenn.“  And just as abruptly as Houdini had appeared, he vanished, but he left with his head and shoulders held a little higher and there was even some determination in his step.  I took a deep breath and turned my attention back to the freshly tilled flower bed before me.  

I have 6 snapdragons and 1 lily making their yearly comebacks.  Perennials just seem to bring me comfort.  I love that they remind me of a phoenix rising from it’s own ashes.  I love that I can arrange smaller annuals around them to accessorize their statuesque beauty every year, and I love that I can change up the accessories if I‘m feeling the need for something a little different.  I love that I have finally gotten over my chronic case of Black Thumb and, despite my chronic case of RSD, I can get down on the ground, dig in the dirt, and make pretty things grow and blossom.  I let my mind drift to my barren back yard and the plans I have for creating a pallet garden haven as well as where I should place the veggies that I had started from seeds and were now big and green and ready to be planted outside so that they can produce healthy food for my tummy.    

And then it hit me … If you sow it, it will grow.  If you nurture it, it will flourish.  If you give it space to take root, it will blossom.  If you throw it out there without watering it or giving it sunlight or removing the weeds, it will die.  And, if you can’t tell, I’m not just talking about plants anymore.

Planting seeds of vegetation and planting seeds of hope aren’t all that different, and in some cases, those seeds are the difference between survival and defeat.  My opinion is that most people fall short during the germination process.  Anyone can put one seed in the dirt just as easily as anyone can offer one kind word or one compliment.  But then what?  Most people turn and walk away thinking that they’ve made their point and done their part by planting that one seed.  And then it’s “out of sight, out of mind.”  But to the person that depends on that seed for their very survival, it’s never out of sight, nor is it ever out of mind.  Stomachs grumble with hunger and briefly elated souls crumble and darken with despair, both causing added physical pain.  

But … If someone were to take the time to tend to that seed giving it the nutrients and encouragement that it needs to sprout, the warmth and space that it needs to take root, the light and love that it needs to grow, and the continuous support that it needs to bear fruit, then that someone would be the one that would be able to enjoy and savor what is produced, whether it’s a watermelon, a bell pepper, or a genuine smile or laugh.  

I have faith that I have been that someone in the lives of a few of the people you’ve read about on this blog, and I have faith that I will continue to nurture the seeds of hope that I have planted within them.  If I can be that someone for them and they, in time and in turn, can be that someone for another person in pain, then I can say that I planted a perennial of hope that will be around to bloom for years to come.  

The Girl Who Cried "Wolf"

I saw a wolf a few weeks ago.  A real live wolf.  I didn't see it in a zoo, or in a cage, or in a local wildlife habitat, or on tv.  It wasn't a dog, or a halfbreed, or a fox, or a coyote.  It was, most definitely, a wolf.  It was about 100 yards away in the middle of a snowy mountain meadow and it was mesmerizing.  There were 3 of us in the truck and we all crept out (ok, they crept, I quietly flumped) to try to get a better look without scaring it away.  There hadn't been a documented wild wolf sighting in Colorado since February 2007.  We didn't know that historical little tidbit at the time, we only knew that we were face to face with a live wolf!  We stood side-by-side at the edge of the gravel mountain road and gawked at the majestic creature for 30-40 seconds before we remembered we had cameras with us.  Our fingers clicked the shutters frantically as the wolf turned and slowly made it's way away from us, down a slight slope, and into a small grove of leafless aspen trees.  Something happened to me as the wolf descended into the trees.  Something familiar and spiritual and surreal and confusing and tangible all at the same time.  Something that I wasn't sure I could ever explain to someone who hadn't experienced it for themselves.  The wolf stopped right at the treeline and turned back to look at us as if she were some old Native American medicine woman leaving us with some parting words of ancient wisdom.  None of us could speak as she disappeared behind the wall of white bark.  

It was like I recognized her from somewhere.  Stranger still, it was like she had recognized me.  Don't ask me how I know she's a "she," I just know.  This may sound completely crazy, bizarre-o, loo-loo, and/or bonkers, but I really don't care.  This was the sign, the spiritual 'ah-ha' moment, for which I had been asking and praying for a very long time, and it all happened faster than a single flutter of a hummingbird's wings.

I was a week away from treatment and physically unable to process the emotions of everything that had happened in that moment in the meadow, but when I got home that evening and had finished crying over the pain, I wrote down what I knew to be the facts of the experience.  Finally, 7 days post treatment, 2 weeks after the encounter, I was able to re-read my facts, close my eyes, and reexamine the feelings and emotions from that day.  I recaptured the solace of her presence and had begun to realize exactly what it meant for me.  The wolf imparted that when I was physically ready and able to accept her gift, it would be out there waiting for me.  She empathized with my loneliness and assured me that the time for the void to be filled was near ... very near. Well ... she was right.  I went out to dinner with a good friend last week (neither of us knowing about the other's fondness for sushi until we sat down for sushi) and spent all day Saturday with my Dad, garage sale-ing and flea market-ing.  (If you know my Dad, then you know how odd the day's activities felt ... in a good way, though!!)    

Go ahead and roll your eyes at me and say "whatever Jenn" under your your breath.  I'm used to it.  I'm an Oldtimer in the wonderful world of RSD.  I'm used to people not believing me.  I'm used to the eye rolls and the brush offs.  I'm used to being judged and mocked and called a liar due something that's out of my control but is every bit as real as my own existence.  I didn't plan on getting a life-altering, debilitating, frustrating, painful disease, any more than I planned on seeing the wolf ... but they both happened.  I can't explain why I felt the way felt in her presence any more than I can explain why one day I feel great and look normal, and the next day I feel like I want to rip off my skin and scream in agony ... yet both feelings are equally real.  I can't explain every single one of my ever-morphing symptoms any more than I can explain how I completely understood every word that that animal didn't utter to this human ... and yet to me, it all makes perfect sense.  RSD has taught me to believe in the unexplainable and that's why I believe that the wolf spoke to me.  Not to my ears, but to my soul.

Having faith is great.  Holding on to faith is hard.  But if you hold on long enough and are willing to look beyond the scope of what cannot be explained, faith brings fruition and reward ... and sometimes it happens in totally bizarre-o ways!!

Side note: Regarding the plethora of shots that the 3 of us took of the wolf, only one single picture turned out ...  mine.  <insert theme from Twilight Zone here>