Regrouping After a Bad Day

Today is supposed to be Friendsday Wednesday but on this, the last day of Nerve-ember … aka RSD Awareness Month,  I feel the need to be my own friend today … my own reality check, if you will.  I find myself asking myself if I did all that I could do to raise awareness this month.  Did I inform at least 3 people of the existence of RSD??  Did I give the tiniest morsel of hope to another RSDer??  Did I offer any kind of comfort or counsel to an RSD caregiver??  Did I do my due diligence, as an RSDer, to remind people that there is faith to be had even on the darkest of days??  Did I validate the any of the trials of another RSDer?? I.  Don’t.  Know.

I DO know that I am more aware.  Everyday is a learning experience for me … good, bad or indifferent.  Everyday is an adventure even it’s not the fun adventures about which I can only fantasize (warm, sunny beaches; palm trees; boats; etc.).  Everyday I receive unconditional love from Kiva … and Bertha … and my family.  Everyday I set at least 1 attainable goal for myself so that I don’t feel like such a failure.  I am far from perfect in dealing with this beast, yesterday’s blog is proof of that, but I put one proverbial foot in front of the other and keep trudging.

Yesterday was a bad pain day, but I fell asleep last night and awoke this morning to the odiferous yummifications of coffee brewing and forehead kisses from my fave canine.  It’s a new day with new hope, new goals and fresh coffee.  It is nowhere near as painful to put my feet on the ground as it was yesterday, but it does still hurt.  The ugly shiny purple color in my feet and fingers is fading back to it’s normal fleshy-pink/tan, the swelling has gone down some and I can sit upright at my kitchen table this morning.  These are the hopes onto which I will cling for the rest of the day.

I cannot prevent bad pain days.  Hell, I can’t even fight bad pain days.  So I quit trying to fight them and began accepting them.  I allow myself to be in pain and I also give myself permission to cry, scream, rant and be sad … for a day.  I don’t have the luxury of being able to choose or plan for my own “day,” so I need to be willing to listen to my RSD and ready to work from within my own bag of tricks.

What I need to remember most of all is that no one is to blame for my RSD.  No one caused it.  The disease itself was in existence long before I was.  I am a firm believer in God, Jesus, Angels and Archangels, The Great Spirit, The Four Winds, the power of the universe, Mother Earth and ME!!  As there is no known medical cure for this beast yet, I hafta hafta hafta turn to my spirituality for hope.  And I hafta hafta hafta keep the faith that my beliefs and my entities will guide and watch over me.  If I start losing my faith, how I can I ever expect to share hope with others whose lives are affected by this horror??  I pray to God that a cure will be found in my lifetime.  I ask Jesus to guide my steps and bless me with the Angels.  I ask The Great Spirit for the assistance of The Old Ones to aide my strength in this battle.  I ask The Four Winds to protect me from my enemies.  I ask the universe and Mother Earth to provide me with natural and holistic methods of  healing.  Before I begin my sequential “asking marathon,” I begin by offering them my gratitude for all things received.  I, personally, think that it’s selfish to ask for more without thanking the Powers That Be for what’s already been given.  Then I ask.  When all is said and done, I ask the PTB what I can do for them.  Life is a total series of gives and takes and if I’m asking them to give to me, I want to fully prepared for what I’ll give them in return.

Good pain days and bad pain days will come and go.  I will enjoy the good days with every fiber of my being and I will accept the bad days as they come, albeit begrudgingly.  The only way we will ever survive the beast of RSD is if we keep the faith and keep our hopes alive.  Keep fighting, keep spreading the awareness, not just during Nerve-ember, but every day of every month of every year!!

Coach Crankypants Rears Her Ugly Head

I had a gazillion windows open on my laptop yesterday for Cyber Monday.  Four windows were different articles that I’ve been working on, my email inbox, Facebook (of course), Gap, Amazon, Barnes and Nobel, Target, Men’s Warehouse, Vera Bradley, JC Penney’s, Kohl’s, Walgreen’s, Pinterest, Fanatics, College Football Store, Crate and Barrel, Bath and Bodyworks, Gymboree, Sesame Street, and Ancestry.  Plus I was tracking my eBay “watch list” from my iPhone.  … I did it all from bed and I still have a little moolah left on my credit card!!!

Why am I in bed??  HA!!  It’s nowhere NEAR as fun as it sounds, trust me.  But I knew, in a general fashion, that I was going to be in some nasty pain after my crazy weekend.  Now, let me define “crazy weekend” for you … We returned from my niece and nephew’s ‘birthday party weekend’ late Sunday evening.  For those of you trying to do the math, let me break this down for you.  It’s a 19 hour drive, round trip.  We left at 6:30 a.m. on Friday morning (myself, my 6’4” brother, my 6’3” father, and my 5’6” mother … that’s alotta need for alotta leg room in a packed-to-the-hilt-with-presents-and-bags SUV, driving thru a heavy pressure front and insane winds!!) … and we got home a little after 7 on Sunday night. 60.5 hours total. Subtract the 19 hours of travel time and that equals 41.5 hours out of the car.  Now … factor in that the Munchkins went to bed at 7:30 p.m. (both nights) and were up at 6:30 a.m. (both mornings), and I can’t forget Saturday's 3 hour nap … so now we’re at 41.5 minus 25 hours of Munchkin sleep, equals 16.5 hours.  Then there was the 3.5 hours of birthday party where I was on my feet (in heels) taking pictures and video.  So to sum up … I GOT 13 HOURS OF FACE TIME!!!  Can I get a WOOT WOOT?!?!?!?!
(_\_) (_l_) (_/_) (_l_) … (that’s my happy butt dance!!!)

I would walk through fire, tornados, hurricanes, volcanic eruptions, earthquakes, terrorist attacks … ANYTHING for my niece and nephew!!  It’s a conscious decision that I made with my head and my heart at the exact moment when my sister told me that she was pregnant.  I knew that I would have to change my life in order to be present in theirs … and I have!!  And I think I’ve done a damn good job of it too!!  I am more than willing to sacrifice whatever is necessary (physically, mentally, emotionally) for those 2 little scrumptious nuggets.  I was mentally prepared for the amount of pain I would be in upon my return home.  At the chalet, I had everything physically ready that I needed to fight the flares as soon as we got back.  I didn’t have a chance to go to the store before we left (silly stores closing on Thanksgiving), but these people are my team, we’d fix it when we got back.  I had to be with the twins and my family … I was as prepared as I could be.

We got home … aaaaaaaaaaand then my messed up, selfish, mental brain started getting in my way.  I call that part of my personality, Coach Crankypants.

RSD doesn’t care what decisions I’ve made with my life and, even after 20+ years, it still tries to take control of my life with a modicum of success.  My hope for the future is that my entire immediate family realizes what I actually go thru, inside and out, for me to even try take back that control ... without them having to feel it themselves.  Their words say that they do, but their actions, quite often, speak volumes to the contrary … Good grief, I can’t tell you how much I wish that I didn't feel this way.  My family is amazing and wonderful and caring and giving and loving and I wouldn’t trade a single one of them for anything!!!  But as I sit here, still feeling the repercussions of our trip, I question their conscious awareness of my RSD.

Now, is this actually true??  Is my family trying to ignore my RSD in the hopes that, once we‘re home, it will just go away??  I honestly do not know, I really don‘t think so, but these are the thoughts that go through my mind.  I try and try and try to suppress these thoughts, but they’re like ticks that burrow into my brain.  I have to be fully aware of what I do and how I do it 100% of the time.  It’s when I’m not paying attention that I get into trouble … a LOT of trouble.  This is why I am a conscious battle-picker.  I KNOW that they love me, I KNOW that they know the initials RSD, I KNOW that they do whatever they can for me whenever they can, and I KNOW that the thought of a family member in pain causes extreme concern and tears to the remaining members.  I KNOW that I’m being selfish by feeling this way, but I am the only one who looks out for me 24/7, and <fuck!!>  I’m tired of doing it!!  I want to turn my back on it and walk away, but I can’t.  I'm tired of always having to rely on someone to do something for me!!  <this is Verbal Regurgitation, by the way> My biggest ally this last weekend was my brother.  He was awesome!!  But he was in a hella lotta pain himself having just had oral surgery.  I tried to not burden him with my shit.  I really did … but that stinker kept an eye on me, God bless him!!

When I got home, I remembered that Mother Hubbard’s problem had nuthin’ on mine.  “Bare” does not even begin to describe my situation.  And although I still have a wee bit o’ money left after Cyber Monday, I am still unable to get to the store.  I had to order Domino’s last night for dinner and it looks like leftovers are on the menu for today.  To top it all off I have 5 loads of laundry to do; I need to get my Christmas decorations out and up; I need to change the belt on my vacuum; I need to clean my house.  … And it hurts to have my feet touch ANYTHING right now, most of all the floor.  ALL of these mundane-ish things that people take for granted.  THESE are the days when I need my team to back me up.  And these are the days when I feel most defeated and lonely because I can’t even take care of my own damn self. <enter Coach Crankypants>  And I'm too damn stubborn to swallow my pride and remind anybody!!

I hate hate HATE myself for feeling this way.  There is absolutely no excuse for it.  They all have their own lives to lead without me demanding any more of their time.  I keep hoping against hope that each time will be different and I won’t feel like this … And each time it does get a little better, but I've still got a long way to go.  I’ll be fine and happy and chipper and positive and optimistic as soon as I’m back on my feet (literally) and can take care of myself again ... in another day or so.  Until then, there’s Verbal Regurgitation, Domino's, Jimmy John's, Netflix, Hulu and Facebook.

Keep the faith, people … I do!!

Getting Face Time

9.5 hours in the car ... Wind, SO not my friend ... But spending the weekend with my niece and nephew is more than worth the agony. Busy weekend so probably won't be able to blog

But I don't care ... I GET FACE TIME!!!
(insert happy aunt dance here)

Giving Thanks ... to Mr Zuckerburg

On this day of Thanksgiving, I think it’s only appropriate that I express my eternal gratitude for … Facebook.  Yes, that social media from hell that tells me everything I never wanted to know about the people who were deluded enough to ‘friend’ me in the first place. (that was my veiled attempt at channeling Maxine.  How’d I do??)  Seriously though, I love Facebook.  It’s where I was reunited, after 23 years, with the 2 friends from high school that have since become my Angels; it’s where I can see what my cousins are up to in their coast to coast lives (and I don‘t have to wait for the Christmas card version); it’s how I know when my niece or nephew has insomnia (that‘s when my sister goes thru and ‘likes‘ my posts and organizes my boards on Pinterest); it’s how I’ve connected with other RSDers; it’s where I post this blog (feel free to ‘share‘ it!); it’s my venting platform; and … it’s where my God-sister found me.

Let me tell you why this last one is so special to me … Almost 43 years ago, a child was born.  True story.  I was there.  Being born at attention (that’s my code for Army brat), means that people will come and go from my life and there‘s nothing I can do about it.  This was the way it was with my Godparents.  My dad was stationed at Ft. Sill in Oklahoma when I was born in January of 1969.  He and my mom chose a fellow soldier and his wife to be my Godparents.   Shortly after that my dad received a Captain’s post in Korea for 18 months and my mom and I headed to Colorado to be closer to her side of the family.  (We are a tight friggin unit when it comes to support … this is the Swede side, btw.)

Anyway, my Godparents had a son and a couple years after I was born, they had a daughter.  I had never met them (that I remember anyway).  My Godparents eventually ended up back on the east coast and after my dad returned from Korea, we moved to Kansas (crossing the border into familial Cherokee territory).  Two families lives held together through a bond created by God, yet forever separated.  … Or so I thought …

Fast forward to the spring of 2011.  I had commented on the Facebook post of an RSD mom (probably spewing sarcasm re: RSD … hey, it’s what I do.) and a little while later I received a private message from some blonde chick.  She asked if my dad was so-and-so and said that she recognized my name and thought maybe, just maybe, I was her God-sister.  I looked at her name and knew in an instant that she was right.  I froze.  I thawed. I fist punched the air.  I squealed.  I wrote back and asked her how she found me.  Her reply was like a stab to my heart.  She was in a few RSD parent support groups with the mom on whose wall I had commented.  Her oldest daughter, now 13, has RSD.

We briefly swapped stories and then <nnneeeeerrrrruuuuuuuummmm> we were on our phones with our parents.  “Guess what guess what guess whaaaaaaat!?!?!”  We might as well have been 12 year old girls that just got front row tickets to see Justin Beiber.

By the end of the day, I was Facebook friends with her, my Godmother, Godfather and God-brother.  Thank you, Facebook (and Mr. Z), for filling a 42+ year old hole in my heart!!  But DAMMIT!!  Why did it have to be because of the beast???  I almost feel like thanking RSD too … but that thought makes me throw up a little in my mouth.

I have SO much to be thankful for this year … Facebook, coffee, an incredible and amazing family, my dog, Bertha, my niece’s successful surgeries, the coolest friends on the planet, being reunited with my Godfamily, lessons learned (albeit some of them painful), my nerve pills, finding out I can play volleyball again (with a protective team!!), my anesthesiologist,  my electric blanket, flare clothes, karma, coffee (yes, again), the roof over my head, the mice under my feet (maybe if I appreciate them, they’ll leave on their own), laughter, my boy-slaves and man-slaves that come over and do the yard work that I cannot, my Vera Bradley collection, I-70, Facebook, Netflix, Hulu, fabric softener, Ziggi’s, and a vivid imagination … and that’s just what I can think of at this moment.

What are YOU thankful for today??


HAPPY THANKSGIVING … <gobble gobble>

Inspiration in a Small, Pink Package

Raspberry Shortcake.  That was how I was first introduced to this spunky little mama.  We met on Facebook a couple of years ago via a few different RSD support pages and that was the name she was using.  We have not met face to face … yet … but we have bonded over some cah-ray-zee similarities.  World, meet Kristen Lewis.  Wife, mother of 3, home-schooling mom, make-up and nail artiste, DD coffee addict, history junkie, drama hater, and she is another “20 plus-er” (has had RSD for over 20 years.).  Standing at a formidable 4’11” with bright pink hair, she is a force to be reckoned with and not to be underestimated.  She’ll kick your ass, dammit!!

Now are you ready for this??  She never had an initial injury to spawn her RSD!!  She went to her 6th grade classroom one sunny, Pennsylvania morning in April 1989 as if all was right with the world.  Her knee was a little sore, but this urchin was a baseball playing tomboy, therefore oblivious to “little pains”.  By the time she had gone home for lunch that day, her knee had grown to 3 times it’s normal size.  Kristen went back to school having been told by her mother to, basically, shake it off.  Three days later, as they were in the car on their way to the Emergency Room, they rethought that assessment.

It wasn’t until June of 1990 that she got her RSD diagnosis.  (Yes, those were the days when it was still diagnosed as RSD and not CRPS.)  She saw an orthopedic surgeon who ran all of the excruciatingly painful process-of-elimination tests, MRI’s, CAT Scans, x-rays, and thermal scans before her diagnosis came … courtesy of a new-to-her doc at Children’s Hospital of Philadelphia (CHOP).   He reviewed all of her test results and <BOOM> ten minutes later he said those three mind-blowing letters … “RSD“.

To hell with baseball at this point, this 13 year old kid had been on crutches for the last 13 months and was wondering if she’d ever be able to walk again!!  She, for obvious reasons, was confused.  How had this happened?  She was in the prime of her kid-dom, what was going to happen to her now?

Within 72 hours, she was admitted into Children’s Seahorse House for a 5 week series of nerve blocks, intense physical therapy sessions and behavioral therapy sessions as well.  Her docs found the nerve blocks to be beneficial to pain relief and very helpful when increasing her PT to 6-9 hours per day.   Over the course of the next three years, Kristen spent a total of 12 months at CSH undergoing 40-50 nerve blocks.  The doctor was reluctant to give her any pain killers and told her that she‘d have to learn to live with it.  (I’m thinkin’ that her age was a huge factor in that decision.)

After all of this suffering and hard work, she had finally been diagnosed as 98% pain free.  The word they used was “remission” ... but they said it would probably not last forever.

At 16, Kristen lost her mother.  Shortly after this devastating and tragic event, she met her, now, husband, Raheem.  Two years later they gave birth to a baby girl and year after that, their litter grew to four with the birth of their 2nd daughter.  Still she was in “remission“.  I asked her how she explained RSD to her husband.  She told me that she didn’t.  She was of the mind that if she just forgot about it, it might never come back.  She returned to school, landed an ah-mazing job and 6 months into her newfound career, she was awakened in the middle of the night by a blinding cramp.  Remission was officially over.  It was time to tell the hubbs!!

“He did not understand,” she said.  “Despite my docs even telling him, he took it personally when I didn’t want to be touched.  It’s been extremely hard.”

At 27, Kristen gave birth to a bouncing baby boy.  This time the pregnancy affected her pain and vice versa.  She was informed about what affects her medications could potentially have on the baby so she weaned off of all meds for the last 6 weeks of being a human incubator.  When the little man was finally ready to make his debut, Kristen was given an epidural.  Aaahhhhhhh … It had kept her pain manageable through childbirth and she was able to care for him right away.


She says that raising children and having RSD has been tough.  The kids know that Mom needs extra time these days; extra reminders of dates, events and projects that are due.  They need to help out a lot more around the house, but they also know that Mom will be there for them always.  Case in point:  1 daughter is a Jr ROTC and 1 daughter is active in dance.  Kristin doesn’t miss an event.   She says, “They are truly supportive even as teens.  They try not to give me too much trouble.”  She also recently started home-schooling 1 daughter and their son … and they are already seeing a huge grade-spurt!  (Kudos to the Mom!)

Kristen has carried with her everything she ever learned at CSH, which she now calls “RSD Bootcamp”.  It was absolutely one of the hardest things that she has ever had to endure, but she has learned how to fight and live her life as best as she can despite the pain.  My fave quote of hers is “Keeping moving keeps me moving.”  I love that!  She uses in-home physical therapies daily and comes up with some kick-ass nail designs to distract herself from the pain.

Her final pearl of wisdom for you is this, “After more than 20 years, I’ve learned that it’s not about what I can’t do, like when I was young.  It’s about what I can do now.”  She a genius!!  A friggin genius!!  (I’m gonna hafta try that one!!)


Do you have any RSD questions for Kristen … or myself?   Leave a message in the comments below, or email them to me at havefaith_91@hotmail.com.

Hollerday Stress Busters

Yes, I call this time of year the Hollerday Season.  That vicious circle of stress = pain = more stress = more pain = … you get the picture, anyway, for years I would end this season curled up in a blob, in my bed, hollering at the top of my lungs for the pain to stop.  No more!!  I have a game plan!!  (heh heh)

Stress is one of an RSDers key triggers to a flare and trying to keep up with the hustle and bustle of the Hollerday season adds a certain little tiny extra punch to the burning, stabbing, sparking, sweating, and  swelling that we’ve already got going on.  I have devised a plan to avoid as much Hollerday stress as possible.  It’s been years in the making and I’m actually kinda excited to put the whole thing into action this year … and find out what I’m gonna hafta add to it for next year.  It’s an ever-morphing process.

1) Repeat these syllables … Let.  It.  Go.  As we get older, everybody seems to vie for control of the family during the Hollerdays.  Despite our best made me-do, honey-do and deary-do lists, so as not to forget a detail, we get so distracted by desperately trying to make everything perfect, that we neglect our bodies.  (Dammit, I forgot to schedule that friggin flare!!  It’s not on my list, therefore it cannot happen … Let.  It.  Gooooooo.)  Ever heard the saying, “too many chiefs and not enough Indians”??  Yeah, that is most families that I know, and mine is no different.  As the single, crippled, childless member of my family, I have made a conscious decision to be an Indian again this year.  I am not giving up on the things I want to do with my family, but I am picking my battles and rolling with the punches.  My family knows my limitations and if it is not within my repertoire to do or fix, then someone else knows that they need to do it, or that we need to just accept it.  And then there’s … What??  You burned the turkey?? <deep breath … in through the nose, out through the mouth>  Let.  It.  Goooooo.  You can’t fix it now, can you??  Take pictures of it, dress it up in your uncle’s hat and scarf and roast your uncle (you could start by saying how fowl he is … and go from there), hit up the Mc Donald’s drive thru and have a picnic on the dining room floor next to your perfectly set table.  No one will ever forget moments like that, might as well make the memories fun.

2)  Look for the Little smiles … Have you ever looked at a child’s face when they experience the wonder of candles and food??  There is nothing quite like those Little smiles to erase woeful moments.  Waiting in line at the grocery store behind a mom with a full cart, a pocket full of coupons and two small children??  Look at those young faces.  Remember, if you can, what it was like to be a child at this time of year.  Remember all of the raised eyebrows and wide eyed moments as you discovered something “Hollerday-ish” for the first time.  Keep fond memories close, daydream a little and before you know it, the cashier will say, “How are you today, ma’am?”  (ugh … ok Jennifer Lynn … Let.  It.  Gooooooo.)

3) Pre-medicate … There is no such thing as “just a cold” to an RSDer.  Our immune systems are already compromised with fighting the daily pain.  I know that with me, a cold becomes bronchitis in less than 2 days and if not managed immediately (which is not always possible), it becomes pneumonia.  I have worked with my GP so that I always have up to date antibiotics, cough pearls and inhalers in my medicine cabinet along with Vitamin C and Echinacea.  2 days before I know I will be seeing my niece and nephew, I start on the antibiotics, vitamins and inhalers.  Young children are notorious for sharing germs … and I want all of the germs that those 2 munchkins have to offer, but I don’t want to get sick.  Practice prevention, talk to your doc, and pre-medicate.  It’s SO much cheaper … and less time consuming in the end!

4)  This year I will not be participating in Black Friday.  There are a few reasons for this.  First and foremost is that I’m not up to playing the role of human pinball only to have to stand in line, on my stabbing, swelling feet, for an hour just so I can save $5.  Second is that I will be in a car traveling home from Kansas City.  And C, I really don’t wanna be a human pinball.  I don’t have the body mass to compete with any of these people (unless they‘re a malnourished 10 year old).  I choose to save my body for the Hollerdays themselves.  Christmas parties, family gatherings, church services, meeting friends for warm drinks and football … Those are the battles I have picked for myself.  Instead, I will participate in Cyber Monday … where the only bruises are on my fingertips and credit card.

ENJOY YOUR HOLLERDAYS!!!

Etch-A-Sketch Brain … It’s A Technical Term

Have you ever walked into a room and forgotten why you went in there??  Have you ever opened the refrigerator, reached in, only to forget what you wanted??  RSDers and non-RSDers alike have experienced this phenomenon, but this annoying malady is intensified in RSDers.  Proven fact, dude … Proven.  Fact.

So this is me … explaining it to you … in my own terms …

I named it “etch-a-sketch brain”.  There is a perfect picture in my mind and in less than a second <tch tch>  it’s gone.  Completely!!  No matter how hard I try to recreate it, it’s never the exact same picture … until something comes along to jog my memory or until I extinguish my pride and ask somebody if they know what I was doing or talking about (in the hopes of jogging my memory.  Never thought thinking could be cardio workout, huh??)  My short-term memory has become a whole series of “now you see it, now you don’t’s”.  But once I can get a thought transferred into my long-term memory vault, I’m golden!!

Etch-a-sketch brain happens most frequently while having conversations.  I know exactly what I’m talking about but there are times when I cannot remember a certain, simple, and important word … or I lose my train of thought all together … mid-sentence.  This is a tough pill to swallow for a semantics queen like myself.  The feelings of inadequacy and of being an uneducated moron creep into my soul every time.  And there is absolutely no way to stop it.  So … I have to accept it, but I don’t have to like it!!  I battle it with all of the humor I can muster.  If not just to put myself at ease, then to put my fellow conversers at ease.  They tend to think that my senility is at stake.  (no, I didn’t confuse that sentence!! haha)  But it’s the look of pity that is the most disconcerting for me … so if I make a joke of it, make everyone laugh, then the looks disappear just as quickly as they apparate.  (notice the HP reference??  Yep, just watched the last movie … again.  47 more times and I’ll have it memorized … just like the last 7!!)

Now, what was I saying??  <tch tch> ... OH YEAH …

Here’s what happens in the brains of RSDers … Our neurotransmitters are already working overtime and blowing everything out of proportion.  Our opiate pain killers block our receptors … and we grow more to replace the blocked ones … which allow for more openings for the next batch of opiates to sink into … which creates the need for more receptors.  (blech!! another vicious circle)  So now we have all of these crazy, misfiring, misinterpreting receptors in our skulls and we have the unmitigated gall to expect them to communicate our thoughts properly.  WTH are we thinking??  (there’s a joke in there somewhere)

Lemme sum up … PICK YOUR BATTLES, PEOPLE!!  We can’t prevent etch-a-sketch brain from happening so we need to make the best of a bad situation.  Don’t beat yourself up for something that is beyond your control.  Wallpaper in sticky-notes, carry a small notebook for things you absolutely don’t want to forget, carry a voice recorder, ask a reliable friend (or 4 … just in case) to help you remember something specific, get a tattoo (on an unaffected body part, of course), make up a song … do something!!  We don’t have to like it, but we do have to accept it!!  Why not have fun with it too??

Must ... Keep ... Fighting

As a kid, my dad got me interested in genealogy.  By the time I was in 6th grade, I had already done reports on the state of Oklahoma, the Sooners (no, the actual  Sooners!!  You know, the land-jumpers … not the University of Oklahoma mascot.) and the Trail of Tears.  Since I had no other immediate relatives living to answer all of my “Why’s”, I researched the events at the library … in books … actual books.   Also at an early age,  I heard stories translated from a Swedish family bible.  I learned a few Swedish words, prayers and hymns, how to hate lutefisk (from experience), and how to balance a ring of candles on my head while delivering coffee and rusks to all of the sleepers on Christmas morning (Santa Lucia). I discovered that I had a passion for research and history (as long as it pertains to something I care about).  I also found hope and strength in the pages of those books and hymnbooks and bibles.  However, it would take me until my mid-thirties, when I was bedridden and desperate, to be able to understand how to derive the particular hope and strength that I needed to fight the beast, RSD.

 My mom’s parents were 1st generation Americans born to Swedish and Norwegian immigrants who came to America on boats with nothing more that the clothes on their backs.  My dad’s parents had American roots that ran quite a bit deeper.  My paternal grandmother was of English and French descent and can be traced to a few of America’s most brilliant forefathers.  She married into one of the oldest establishments in “new world” history … The Cherokee Nation (who liked to mix it up with the Scots back in the day).  For all intents and purposes, I refer to myself as a Swedish/Cherokee because those are the ancestral traditions to which I adhere.  Whereas in reality, ima mutt!!  But I am the offspring of some the toughest, strongest, most persevering sum’bitches that ever walked the earth!!

The Cherokee … survivors of the Trail of Tears, Indian Lawmen appointed to the new US Marshal’s Service.  Homesteaders trying to gain equality while the white man suppressed their efforts, all the while still gaining the respect of law abiders and criminals alike.  (My great-great-great grandfather, had to register his fists as deadly weapons … true story … I have the documentation to prove it.)  The Swedes … refugees of terrible economic conditions, looking for work and better living conditions.  They had to change their last name upon arriving (I’m guessing it was a pronunciation thing) and became loggers and farmers.  They built churches and homes for themselves and other Swedish immigrants, never having forgotten their own generous and peaceful heritage.

This is the DNA that courses through my veins.  These are the stories that fuel my desire to fight.  I read about the hardships they all had to endure … and since I’m alive today, they must have triumphed over those hardships.  I owe it to them to continue that stalwart legacy.  I owe it to my niece and nephew and all other future generations of my family to keep fighting so that, God forbid, anything should happen to them, they can say, “I remember the stories that my Aunt Jenn told me and I watched her fight.  I know I can fight too.”  I have already started telling them stories.  Yeah yeah yeah … I know.  They are WAY too young right now to know what I’m talking about … but as they get older, they will remember that they come from a very, very, VERY long line of fighters and survivors.  We can’t help but be that way, it’s in our DNA!!

I strongly encourage you to do some research of your own.  These days, we have the luxury of being able to use the internet to do most of the work for us … and you never have to get out of your jammies to do it!!  Just try it.  Find out what forces joined together to make you who you are.  Draw from their legacy … and then leave one of your own!!

"C" Is for Coffee ... That's Good Enough for Me!!

Ode to Coffee (and Bertha) … by Jennifer Samson

Oh elixir of the gods, you warm me
You greet me each morning with an abundance of spunk
Your rich bitterness soothes my soul
You keep me moving and put junk in my trunk.

Your odiferous wafts reach out to me in bed
You help me put one foot in front of the other
You organize my thoughts and calm my mind
Why can’t you do that to my brother?

Oh elixir of the gods, you inspire me
Most days it hurts to move and still you beckon
I will walk thru fire to get to you, you stud
I would collapse and die without you, I reckon!!


There you have it!!  Being an RSDer automatically means that my motivation sucks!!  I don’t want to move because moving hurts, dammit.  The ultra strong coffee (caffeine) that Bertha dispenses every day is pretty much the only thing that keeps me moving.  My friends that have joined me for a cup or two of this thick, dark, warming liquid have created a term for how they leave my house.  They leave “Marty’d”.  As in Marty Feldman from Young Frankenstein, with their eyes bulging and twitching.  I drink 2-4 pots of that eye tweaker a day, what are they bitching about??

I punished my last coffee pot, Bessie, for almost 9 years.  I can only hope that Bertha lives up to the legacy of her predecessor.

Each and every coffee shop that I’ve been to prides themselves on their roasts.  I pride myself on the strength!!  Even their regular bold roasts are too weak for me … Make mine an extra large Americano with an extra shot and room for extra cream please!!!!!  Or let me go back home and brew my own … 1 heaping cup of grounds for 12 cups of startlingly smooth caffeinated joy.  If my tummy and I are quarreling (it happens more than I care to admit), I will switch to chai with a shot of espresso.  Whatever the drink, the goal is the same … caffeine!!

The down side to ingesting this much caffeine are what I call “the hippy-hippy shakes” … also known as dystonia.  (another really fun side effect of RSD … ugh)  I get the shakes even without the coffee but, in all honesty, the caffeine does not help.  Those are the days I only have 2 pots.  Hey, I still need to function, don’t I??

I am a battle-picker.  I pick the daily battles that I know I can win and set attainable and challenging goals for myself throughout the week.  It builds my self-confidence and independence.  It’s always a struggle but that enriched cup of heaven keeps me motoring right along towards the achievement of said goals.  (It’s the only thing keeping me typing right now.)

Lemme sum up … COFFEE IS GOOD!!!  … nuff said!!

Dating and the Dystrophy ~ A Love/Hate Story

I am good at being alone!  I wasn’t always, but experience seems to have made me good at things that I would have never thought possible.  (being a smart-ass is another one, but that’s a story for another day.)  I have lived all on my little own for 4 years now.  Not bad for a tall, skinny, crippled broad with abandonment issues.  I don’t have to pick up my skivvies that I leave lying on the floor, my dishes can sit in the sink for an extra day (or 2 … or 3), I can roll around in the fetal position screaming in pain without freaking anybody out, I can drink all of the coffee that I want without be judged, and … I can listen to all of the Glee songs I want to without being chastised.  

On the flip side of that coin is being lonely.  I SO suck at that!!  Hmmmm … ok, maybe I need to rethink that last statement … let’s try this … I’ve gotten good at dealing with loneliness too ... but I hate, Hate, HATE being lonely.  (whew, there!!  much better!!)  So I got a dog and she is a godsend.  However, as much as I love, adore, and cherish Kiva, there are just certain physical and emotional voids that she cannot fill.  

So what did this girl try to do??  If you guessed “online dating” you’d be right.  e-harmony, Match.com, and POF.  I’ve met some great guys but, as you can tell by my current “Miss” status, none of them have made the cut.   I am a woman first and an RSDer second.  I’m a package deal.  I can’t tell you how much I wish that that wasn’t the case, but there ya have it!   The package may be wrapped well and have a pretty bow, but the contents are a bit jacked up … and that’s what bites me in the ass every time!!  I have a huge heart and tons of love to give, but my body can’t always show it.  Every day is a crapshoot and I have a tough time asking any man to take that gamble.  So I deactivated my accounts and started making rules for myself.

I don’t want to be a serial dater, a port in a harbor, or a beck-and-call girl.  I want (and deserve) the love of a lifetime <insert cheesy love song here>.   I want to spend my life with someone, not just my cell phone minutes.  It is not easy being an RSDer, and the man that takes this ride with me needs to be willing to handle the bad days every bit as much as he enjoys me on my good days.   The only way to do this is to spend time with me and learn through living.  Phone calls, texts, online chatting are great ways to get to know how each other thinks, but until we spend a considerable amount of time together, in each other’s presence, he and I will never know how the other one behaves.  I have oodles of faith that I will meet Mr. Right eventually, but I am wary and tired of the Mr. Wrongs.  Is there any wonder why I’m so cynical about dating??   I’m not looking for a man with no baggage … I’m looking for a man whose luggage compliments mine!!  It doesn’t have to match, but it does need to look good together!!

Enter the newly coined term “non-date”.  A non-date is a day long event.  It begins with a handshake and coffee and the rest of the day is spent walking or sitting and talking … and examining baggage.  Not pawing and molesting and opening up drawers.   Did I mention that it takes about 2-3 days to rest my body and save up energy for an excursion like this??  I have to have every wall and barrier in place on the off chance that the man is a freakin octopus with sadistic tendencies.  My experience has been that, because of my looks, guys only want to get me into bed … not giving a rat’s ass about or my heart or the pain in my body.  The non-date is the escape clause.  It’s RSD and me, or it’s nothing!!

I know I have a lot to offer Mr. Right in spite of the beast.  I just need to find that 1 guy to see me for me and not what they want me to be.

Lemme sum up … if he wins my heart, then he wins each and every good day I have to offer and has an upper hand in encouraging me to fight harder for more good days!!  Every triumph over the beast is just that much sweeter with love as the catalyst.  I have found that with the right kind of emotional support, I can even play volleyball again!!  But if he tries to ignore or deny the disease’s existence, not only does he deflate my bubble and deplete my strength, but the bastard is not worthy.

And so I sit … single and happy with the decisions I have made … but still lonely :(

Nerve-ember cold is the devil ... Mama says so (sorry mom)

I guess at some point I should mention that November (forevermore known to me as Nerve-ember) is RSD Awareness Month.  If you're reading this blog, then I know you are already aware to some extent.  Please do me a favor ... pimp me out to your friends and family members!!  Help me make everyone aware!!  I have been seeing orange ribbons all over Facebook and other social media this month and it has been fan-freakin-tastic!!!  But ... I want to be able to reach out through my core network of friends to others who may have pain tricks of their own to share with me and others.  The cost of meds, treatments and therapies are so damn expensive anymore that every little trick helps!!  And ask me questions on here too, or tell me what works and what doesn't, bitch about your pain ... PLEASE!!  RSDers, you are not alone!!  RSD families, you are not alone!!  RSD Angels (friends and caregivers), you are not alone!!  I have a plethora of support to offer and so does my inner circle of family and caregivers.  The more you know, the more you can help me make others aware!!  RSD in an invisible illness.  You might not know which of your friends has it and which ones don't ... unless you share and ask.  A lot of sufferers are too ashamed to talk about their pain because they've been called hypochondriacs, liars, pain med addicts, etc ... it's humiliating!!  Please reach out!!

Now, it is only mid Nerve-ember but I can say with the utmost certainty that COLD IS THE DEVIL!!  Brrrrrrrrr ... freakin brrrrrrrrr!!!  Just when I think I've finally warmed up some, I get this chill that just rattles my bones.  I start shaking, my teeth start chattering and my RSD goes "ZZIIIIINNNNGGGG"!!!  (the bat rastard!!)    I shoulda known that when I woke up puking at 5 a.m., today was going to be rough.  That's my flashing neon, warning sign.  Attractive, no??  I look at it this way ... at least I have a warning sign!!  Fortunately I've had a pretty firm grasp on my secret weapon today ... a good mood!!  I fixed my phone all by myself, the other 2 Angels are doing some amazing things in the world today, I found a jar of homemade chicken noodle soup in the back of my freezer, I got a few answers to plaguing non-RSD questions, and I found an interviwee for my 1st "blog interview"!!! None of these great factors take away my pain, nor do they make the pain any more bearable.  They do, however, keep me pleasantly focused on something other than the pain.  Gotta love distractions, man, I'm tellin, ya!!

While everything that is keeping my spirits up are great, the best of these was finding the soup.  On bad pain days I usually don't eat.  Not only am I nauseous from the pain, but it's almost unbearable to stand up to cook.  What sux the most about this is that I love to cook and I used to be pretty damn good at it.  I owned my own catering business for a while and everything.  Nowadays I have no one to cook for me on days like this except for me, and I may have lost a step or 2 in the kitchen over the last few years, but that's ok.  I deal with it.  (thank you Stouffer's)  But I guaran-damn-tee you that I can't cook when I'm shaking and chattering and zziiiiiinnnngggg-ing and aching and my muscles are twitching.  I can't always afford delivery, so pre-made meals are they way to go sometimes.  This is one of those times.  So I will sit here mummified in my soft electric blanket; and my loose, soft flare clothes; and my fluffy white socks with hearts on them; curled up with Kiva and a large cup of coffee while I wait for the soup to finish thawing.

Have faith, peeps ... tomorrow is a new day!!

   

Verbal Regurgitation (thank you Facebook)

I have these 2 friends ... no really, I do ... They are my rocks, my cheerleaders (minus the skirts), my inspirations, my voices of reason when mine is mute (or gagged), my babysitters, my sounding boards, my co-conspirators, my co-defendants (not yet, but give us time) ... anyway ...  They have their own pain issues too (1 has ol' lady knees and the other has an ol' lady back) but those two goofballs give me strength!!  Now here's where this gets tricky, because they will tell you that I'm the one that gives them strength and inspiration.  They.  Are.  Dumb.  I cannot be who I am and do what I do without them in my life ... every day!!  They make me fight when I think I can't go on and they call me "bitch" and mean it!!  But when those 2 say it, it is said with all of the love, respect and admiration that 3 friends can share.  We call it like we see it with each other ... and without all of the cattiness and backstabbing that goes along with most female friendships.  I have never said this about 1 friend, let alone 2 ... but I need them both desperately!!  Two of us live in the same town and try to see each other at least once a week.  The other lives a kadrillion miles away in another state.  So we Facebook.  We have a series of group messages that is longer than my left leg ... and that's just over the last 10 days.  We share stories about the idiots, our families, our dogs, our frustrations, freakin hilarious jokes and auto-correct "fails" that are not appropriate to put on our walls, we ask for input and advice and we practice the fine art of Verbal Regurgitation.

Yet another Jenn-ism, Verbal Regurgitation is the practice of venting about a certain current situation or insecurity just to get it off of our chest so we can get over it, forget about it, and get on with our day.  And might I just add that it is very effective!!  It is the only venue where I don't give a crap about grammar, spelling, and punctuation.  It is a full blown rant.  Usually, we use all of the cuss words in our arsenals, caps locks, and we go ballistic with exclamation points and question marks.  V.R. is the best psychological and emotional therapy that I know of.  And a hell of a lot cheaper!!  So if you can get your hands on 1 or 2 good friends who know when to keep their mouths shut and when to give advice, I highly recommend the practice of Verbal Regurgitation!!

To date, there is only one man that has been able to handle the 3 of us when we're together.  We have nicknamed him "Bosley" and we are his "Angels".  This man is ah-mazing!!  A couple of weeks ago we had a pretty heavy snow storm.  I'm pretty sure you can guess how that cold and wind was making me feel.  Whether I want to be or not, I am an early riser unless I'm in an abundance of pain.  On this particular morning, I slept in until 6:30.  After doing the Frankenstein Crawl to my living room, I opened the blinds expecting to find this perfect blanket of white shit across my whole front yard.  What I saw instead, were damp sidewalks and walkways with 6" walls of snow on the sides, and tufts of shoveled snow in the yard.  5 minutes later I get a text from Bosley telling me to stay inside and stay warm.  He took care of my walks before he went in to work.  And that's just one thing that he does for me!!  He's a great friend and confidant to my girls too.  We LOVE him!!!

If you don't have friends like mine, get some!!  If you can't get them on your own, buy them!!  Do SOMETHING!!!  Whether you're and RSDer or an RSD Caregiver, friends like these guys are imperative to our sanity!!  They give freely, listen closely, and ask nothing in return.  To my Angels and Bosley, you know who you are and you know how much I love you.  I thank God for you 3 every single day.  If you ever leave me I will hunt you down and bludgeon you with the remnants of my 20 yr anniversary of dealing with RSD ... you know, the FURSD Day extravaganza??  Yeah, I'll beat y'all with it!!  You're stuck with me!!

Directionally Challenged ... it's a Jenn-ism

This is an all-encompassing phrase that pretty much sums up my whole adult life.  But here's what made me think of it today ...

I got lost in north Denver this morning ... even with GPS on my iPhone.  For some reason, I subconsciously find the need to go beyond my turn for a block or 5 before I turn around and try to get back to where the little blue dot on my phone says that I need to go.  Yep, it's not an adventure unless I have to make at least one u-turn.  Needless to say, I have had a lot of auto-ventures!  For about 16 years, most of these auto-ventures resulted in a stress-induced flare.  As the years went on, the only thing at which my skill level improved was hiding the pain.  Put me on a highway, interstate, open road, in mini-cities or smaller and it's vroom vroom-game on!!  Put me in big cities and expect me to navigate myself more than 5 minutes off of the interstate or beaten path and I am screwed!  But you know what all of this has taught me over the last 4 years?  If I can find a way to poke fun at myself, make light of the situation and, most importantly, laugh, I can avoid a flare, relax a little bit and that's when I usually locate my destination.  It's all a matter of perspective.  Unfortunately there are very few people who take the time to understand my quirks.  Most people just think I'm a little crazy and try to help by telling me where to go, but my true friends trust that I will get them to our destination safely ... via a scenic route and they will laugh with me.  And can I just say, "thank God for open minds that allow the possibilities of multiple perspectives"?  Seriously!  If I stress out about every little thing that I screw up, I'll be locked up in a padded room and heavily sedated.

Back to getting lost this morning ... I was heading to the elementary school where my brother is a 2nd grade teacher.  They're studying the War of 1812 and my brother knows that history is one of my passions and had asked me if I would like to come and help.  So ... While he taught about Betsy Ross, Dolley Madison and Francis Scott Key, I graded math papers.  While he was explaining how "Old Ironsides" got it's nickname, I was checking vocabulary homework.  And while he was giving a math lesson about measurements, I was playing on Facebook on my phone.  Honestly though, I love helping in the classroom.  I've been doing it for over 25 years.  My mom retired from kindergarten teaching 2 years ago and my sister teaches Kindergarten in Kansas City.  Helping with kids is one of the few things that I can do where I feel good about myself and the work I do.  And sometimes, the satisfaction of being able to help my family and future generations and be able to put my heart into the work without hesitation is a fantazmic distraction from the depression off of which the teeth grinding pain feeds.  Today is just that kind of day!!

Another u-turn that I've made in my life was quitting booze and pain pills.  In my own defense, I was only taking the pills as prescribed.  You know those little warning labels on the sides of the pill bottles?  There's "Take with food," "Stay out of sunlight," "Avoid operating heavy machinery," "Do not consume alcohol while taking this medication," ... yeah, I didn't pay a whole lot of attention to those.  I had a flask of martini's tucked beside my bed, I filled and refilled empty 2 liter bottles of ginger-ale with $20 bottles of champagne and, at one time, I had a lovely collection of wine bottles.  No two were the same.  I was so f*#cked up all of the time that I only got out of bed to go to the bathroom, refill my coffee and smoke.  My folks (God bless 'em) sat me down for a little intervention on a sunny Sunday morning in June of 2005.  That was pleasant ... NOT!  My mom lost all of her make-up and snot to two boxes of tissues.  My dad, Mr. Stoicism, could barely look me in the eye ... and he's an attorney!  Last but not least there was my husband (now EX ... again, let's thank God for that), who was ready to give my skinny ass the boot.  We looked at 28 day rehab facilities but because of the RSD, no one was willing to take on that liability.  So lucky me got to spend my time in the psych ward ... oops, I mean Life Management Unit.  It allowed my docs to monitor me as I detoxed from the alcohol while they re-regulated my pain meds.  After 3 days with the crazies, I walked into the shrink's office and told her that I wanted off of ALL of my meds.  I was sick and tired of being sick and tired and I was willing to stay there to do it. We had a pow-wow with my other docs and I was warned that there would come a day when I would have to take them again.  I said, "Nope!  Let's do this!"  (I was riding the pink cloud of being sober, don't judge!)  Three weeks later I walked out of that place with a new lease on life and some really cool pictures that I drew during art class.

IT IS OK TO MAKE U-TURNS AND LAUGH ABOUT THEM!!!  You WILL arrive at your destination eventually, but make the best out of whatever bad situation you're in ... or at least try to make the best out of it.  Stress adds pain, pain adds stress, stress adds pain, pain adds ... do you see the ugly monotony that can be avoided??  I knew you could!!

And away we go.....

Welcome to my world, bloggers!!  I can tell you with the utmost certainty that Mother Nature is a "skank" and she is usually the cause of most of my flares. Coffee is the elixir of the gods and I named my coffee pot Bertha because it's a good, strong name that she lives up to ... 2-3 times a day!!  My dog, Kiva, is my child as I have no kids of my own.  I have a niece and nephew (twins) that I absolutely adore and I would deal with any amount of pain to ensure their well-being! ... I fashion my sofa into a "padded surf board" for sofa surfing during my flares, I try to use creative substitutions for cuss words, and I rely on my friends to help keep my spirits lifted.  It is SO much easier to fight the pain and the depression that the pain causes when I'm in a good mood.  I have the best friends on the planet!!  Stress and weather changes are my biggest flare culprits.  I try to stay as calm as possible and roll with the gut punches of the ever-changing Colorado atmosphere.  I am not perfect and I can be down right b*tchy on my bad days, but it's how I choose to handle the situations presented to me that make me a survivor!!