Giving Ketamine a Facelift

I am way a lot bent out of shape at National Geographic Channel’s portrayal of Ketamine in their show, Drugs, Inc: Ketamine … and I’m not the only one.  Unfortunately, it has gotten a bad rap, courtesy of the king-pin drug lords who dole out “Special K” to their eager beaver abusers.  I’ve said it before, and I’ll say it again … I hate the side effects of Ketamine but it’s pain relieving properties totally outweigh anything negative.

So … I’m calling on all of you to help me!!  I am writing a letter to Nat Geo requesting that they show both sides of the Ketamine controversy.  In this blog I am including my rough draft of said letter but I need more input … from YOU!!  I know that quite a few of my readers are receiving K treatments of some kind, whether it’s via nerve blocks (like myself) or infusions (like the Penguin), or, and I have only read about them, the overseas Ketamine induced comas.  But if I had more direct human sources to quote, I could make this letter a hella-ton more persuasive.  In my own opinion, Ketamine has become the wonder drug for most RSDers, but we are taking a beating when it comes to public awareness.  Help me quash these rumors that we are falling into the “addict” stereotype for something that really is beneficial to our well-being!!

_____________________

To Whom It May Concern;

I would like to begin by telling you how much I enjoy and respect your television and magazine publications.  You have provided me with valuable information and breath-taking photographs over the years and I look forward to learning more from National Geographic for many years to come.  That being said, I am appalled at your portrayal of Ketamine in your show Drugs, Inc: Ketmaine.  Whereas it has sadly become a street drug, that is not it’s only use and it DOES have benefits when used and administered correctly.

I have a nerve disease known as RSP/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome).  The McGill Pain Index ranks RSD pain as being higher than non-terminal cancer, childbirth and amputation.  I have had this disease for over twenty years and I can honestly tell you that is like a living hell.  To put this into layman’s terms, RSD/CRPS is caused by trauma to a nerve or nerves, usually in a hand or foot.  It can be brought on by a sprain, fracture, and surgical incision; or even something as minute as slamming a finger in a door or stubbing a toe.  It can also happen as the result of another disease, such as shingles.  RSD has been described as a condition characterized by pain that is over and beyond the normal amount of pain that accompanies the initial injury, and when the injured limb has healed, the out of proportion pain is still prominent.  In addition to the pain, other symptoms include, but are not limited to: blood flow deviations that change the color, temperature and/or skin thickness of the affected area; swelling; loss of movement (range of motion), atrophy (disfigurement), dystonia (uncontrollable muscle spasms and shakes) of that same area.  RSD/CRPS is manageable but not controllable, nor is there a cure for the disease.  And it can spread, within an individual’s body, to the other limbs, core, face, and even organs.  RSD/CRPS can also incite numerous other autoimmune diseases.

For myself and many other RSDers like me, including young children, Ketamine has brought us as close to pain-free as we can get without a cure or going into remission.   Why did you not mention these benefits in your program?  You are usually fair in your portrayals of controversial issues but you have really let a number of us chronic pain sufferers down on this one.

I feel that I must clarify for you that, personally, I do despise Ketamine’s side effects.  All of them.  I receive Ketamine nerve blocks twice a year because that is all I can consciously allow myself.  I do not enjoy feeling trapped inside of my head, as if locked in the basement of my own worst nightmare.  I do not take any pleasure from vomiting for hours after I awake from the anesthesia.  I loose one week of my life during my Ketamine recovery while the fuzzy-headedness, waves of nausea, vertigo, and memory lapses  wane.  What makes all of this worth that suffering is the pain relief, limb temperature increase, and return of mobility that I know I will feel immediately.
____________________

Today I saw an article from NPR about the benefits of Ketamine for depression sufferers.  That's a start!!  (and I'll find a way to incorporate some of that info into the letter later today.)

Now I need your help, RSDers, Caregivers, and Normies!!  What are some positive aspects of your dealings with Ketamine?  How have you seen it work in your loved ones?  Do you think that we deserve the label “addict” because of our need for Ketamine?  Please reply in the comments, or if you wish to remain anonymous, you can email me at havefaith_91@yahoo.com.  Help me put an end to this nonsense!!

I have faith that we will be justified in the eyes of the world … eventually.  Until then, speak up!!  Let’s make our collective voices heard!!

I'm Thinking of a Number Between 1 and ... Damn!!

For the next 3 days, I will be spending a considerable amount of time doing some soul searching, life evaluating, list making, future planning, and laundry folding (that’s when I am most productive in my thinkings ... and it's PT for my hands!!)  It has happened at the end of every January since 1992, whether I’ve wanted it to or not.  Not the laundry folding part, that happens a couple more times a year than just January.  But … I honestly don’t mind doing the reflecting this year.  As much as the year, in general, sucked, I did some good things at 42 and made some personal strides that amazed even myself.  I actually took care of me this last year … that was a huge accomplishment in, and of, itself.  I found some new tricks to get through my bad pain days, gained some more acceptance of my crazy sleeping patterns, increased my appreciation for coffee, spent quality time with my family, honed my closest friendships, made a few new life-long friendships, stayed sober, gained and kept 17 lbs, raised a poop-ton of awareness for RSD, and found my calling as an advocate.  Not too shabby for an old, skinny, crippled broad.

Soon I will be a year older, a year wiser, and a little more grown up … hey, I said "a little"!!  I am one of the few women, that I know of, who doesn't mind screaming my age from the rooftops.  I will be 43 and I am damn proud of it!!  I don’t look 43, I don’t act 43, and I don’t feel 43 … some days I feel 83, some days 23, some days 243.  But all RSD issues aside, I think I've aged pretty damn well, thank you very much!!

I believe that each year of our lives should have it's own theme, or goal, if you will.  We are forever changing as we age and what applied to us in our 20’s and 30’s is not necessarily what applies to us in our 40’s.  I‘m pretty sure that my goal for the whole of my 20’s was to stay overly medicated and drunk, refusing to accept my RSD.  Pure speculation on my part, but there you have it!  “Independence” was my theme for 39, “Acceptance” was my theme for 40, “Discovery” was my theme for 41, “Patience” was my theme for 42  … “Happiness,” I think, is what I’d like my focus to be for 43.  I’ve earned it!!  I won’t say that I ‘deserve’ to be happy, but I have definitely earned the right to be happy.  RSD has taken so much from me over the years that if I dwell on it long enough, 43 could be the year of “Depression.“  But we refuse to let that happen.  Yes, I finally have the right combination of people … a team … in my life to insure my happiness when I cannot find it for myself.  This team has proved to me that they are ready, willing, and able to fight with me and for me … people who have earned my trust through their actions.  I must say that this is a pretty big deal for me.  To me, happiness is not just an emotion, it is a state of the heart and soul that oozes from every pore.  Pain be damned, I will be happy … and I am closer to that goal right now than I have ever been!!   Look out 43!!  I’m comin for ya!!  Your ass is mine!! ;)

I have faith that 43 will be my year for new beginnings and happiness … GAME ON, DAMMIT!!

Finding the Joy in Pain

First Things First … A few quick FB updates from the Warrior Mama yesterday told us that the Penguin’s surgery went well.  Her gastric stimulator is in place, however, her outtie belly button  is not ... anymore.  (I had to giggle at this one, being a recipient of numerous laparoscopes myself.)  She was very uncomfortable going into last night.  It hurt for her to move any part of her body and laughing was a definite no-no.  The night nurse was an angel, or so I’m told, and the day nurse probably needs to smacked upside the head with a 2x4.  I’ll almost feel sorry for that broad after the Penguin gets done putting her in her place … almost.  For a 12 year old, the Penguin is, sure as sheeeeeeeeeeet, her own best advocate … AT 12!!!!!  Her uphill battle begins today.  The docs want her to eat, walk, go to the bathroom … and right now she wants to sleep, so guess who‘s currently winning??  HA!!  I’m sure she’ll be moving a little this afternoon though.  It’s all about the baby steps, even if it’s 1/8 of a baby step!!  I love that girl, and her whole family!!  They keep me inspired to fight!!

A couple months ago, another acquaintance of mine from high school sent me a message on Facebook.  She asked me if I’d ever read the book You Can Heal Your Life by Louise Hay.  I can honestly say that I have, but it was about 15 years ago when I was still open to self-help books.  I will call this friend the Guru because of the teaching and healing work she does in Joshua Tree, CA.  The Guru then proceeded to ask me to write a blog entry about finding the joy in pain.  Seriously??  There’s joy in pain??  Since when??  Well … ... Since yesterday!!   Thank you, Guru, for making sure that my eyes were open to this possibility, so that when it did present itself, I was ready to pay attention.

Yesterday was the 2nd Annual Crazy Sock Day to raise awareness for RSD … AND to show our support for the 12 year old, Smiling Warrior Penguin.  We didn’t get any of the press that we had requested, but … WOW!!!  What a showing of love and support!!  The Penguin, the Warrior Mama, The Daddy, the few other RSDers that I had enlisted to help orchestrate yesterday, and myself were elated and teary-eyed at the number of supporters who donned the craziest socks they could find to help us raise awareness.  I’m still a little misty today as I look back over all of the pictures.

The “joy” for me began yesterday at 5 a.m. MST when I received the first text pic of crazy socks before I had even gotten out of bed.  Then I logged into Facebook and <WHAM> I’d been tagged in over 40 pictures already.  My heart swelled.  And the hits just kept on comin … all day … and night.  My whole family participated!!  The Bombshell had recruited her entire elementary school.  The Munchkins and the M’s had “S” day for “socks” and they all rocked ‘em!!  Houdini had to take a video of his class’ socks because there were too many to fit into 1 pic!!  My dad and his law firm participated as well, and my mom … ah my mom … I love my mom … she made sure that we all had our crazy socks to show off!!  I even got pics from one of the Bombshell’s in-laws!!  Do you have any idea how huge that it for me??  My high school friends were crazied-out in full force and my college sorority sisters and their kids were stylin’ in their socks also.  Then there were the additions from the Kansas Contingency.  This is a mass of people that range from my own days in Wichita, prior to contracting RSD, to the friends made while my sister and brother were attending college in Little Sweden.  It was overwhelming in the best possible fashion!!  By the end of the night, I had 25 new Facebook friends, courtesy of RSD and the desire to spread awareness.  How much more “joy” can 1 skinny, crazy, crippled chick handle??    I didn’t even know that that many people remembered me!!  Ah crap … tears again.

The “pain” became amplified right on queue yesterday at 3:00 p.m.  I tried to lie down on my heating pad and rest but my brain wouldn’t have any part of that.  I got back up and kept posting and tagging and downloading pictures.  At 7 p.m. I finally remembered to eat (God bless leftovers) and kept working.  At 10 p.m., out of sheer exhaustion, I collapsed onto Bodieland with Kiva curled up beside me.

After being awakened at 11:30, 1:20, 2:03, 3:47, 4:32, and 5:19 by the pain, I gave up on trying to sleep anymore and did the Frankenstein Crawl to Bertha for some TLC.  And here I sit …at 10:30 … at my kitchen table … praying for motivation to accompany my heartfelt desire to keep working … but it’s not happening … and that’s ok!!  I planned for a crash today.  I was prepared for the pain.

Today I have faith that all of us are able to find the joy in our pain.  If I didn’t have this disease, I don’t think I’d be as open to my calling of raising awareness … and I sure as sam-hill-heck wouldn’t have all of the people in my life that I do.  RSD has brought me joy.  Having said that, if you feel the need to call the loony bin and have me committed, please do!!

The Penguin!!! The originator of Crazy Sock Day!! The Smiling Warrior!! The 12 year old!! The RSDer!!

Tick Tock Tick Tock

sing with me now ....

The socks'll come out 
Tomorrow
Bet your left shoe 
That tomorrow
There'll be socks!

Just thinkin' about
Tomorrow
Clears away the toe-jam,
And the sorrow
'Til it rocks!

When I'm stuck with all white,
Or gray,
Or hole-y,,
I pull on crazy socks,
Leave off the Crocs,
And Saaaaaaaay,
Oooooooooh!

The socks'll come out
Tomorrow
So ya gotta hang on
'Til tomorrow
CRAZY SOCK DAY
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're only
A daaaaaaaaaaaaaaaay
A waaaaaaaaaaaaaaaay!

                      ____________________________________________

Aren't you glad that you don't live in my brain??  I'm tellin' ya, it's esceeeeery up dere sometimes!!  The 2nd ANNUAL CRAZY SOCK DAY is hours away from spraying the world with color!!  The Penguin is celebrating CSD2 at her school today since she will be in surgery tomorrow for her gastric stim placement.  She is SO cute with her Crazy Sock Day t-shirt, jean shorts, and yep, you guessed it, CRAZY SOCKS!!  I will try to post her picture here, but I'm still new at this, ya know!!

Before I sign off and get back to the last of the publicity work, I hafta hafta hafta tell you what Houdini (my brother) and The Bombshell (my sister) are up to!!  (Houdini teaches 2nd grade in Denver and The Bombshell teaches kindergarten in Kansas City.)  They have, basically, declared war against each other to see whose school can show the most support for CSD2 and the Penguin!!  I've already started to see a few pics pop up on Facebook (yes, a day early), and, can I just tell you how fun it is to have these 2 "kids" fight over the attention of their eldest sister??  I've been waiting for this moment since they were born!!  To have this happen now, for the Penguin and RSDers everywhere, just means that much more to me, and although I didn't think it was humanly possible, it makes me love them even more!!  Thank you Special K and Choo!!  I love you both SO much!!

My faith, yep, I still have it!!  I have faith in EVERYTHING and EVERYONE today!!  Now, GET OFF OF YOUR TOOKIS AND GO YOUR SOCKS!!!! :D

Viewer Mail ... Oh Really?????

Dear Jenn,

I think it's great when you're having your "good pain days" but I think we all get more out of your writings when you're bitching because you're funnier and more informative when you're frustrated.  You have a way of putting things that I/we can use and adapt into our own lives.  It's not that I/we want you to have to bitch, but I think that we get more out of your blog when you do.

Thank you for all that you do for all of us.
Bumblehead in Boston ...

(I had to rename this person.  They originally signed the email, "Bitchy in Boston" ... I prefer "Bumblehead" for the schmoes that can't see the silver lining from behind their pill-bottle-colored-glasses.)

                                              ______________________________


Dear Bumblehead,

Are you kidding me???  Allow me to rephrase that ... Are you effing kidding me???  I appreciate the fact that you can commiserate with the "good" and "bad" days, but what the hell is the purpose of bitching all of the time??  It makes me and the people around me cranky!!  The things that cause me to gripe and complain are are the things that exacerbate my pain levels and I have made the conscious choice to fight, with everything inside of me, to not give in to those "bad pain days."  Of course there will be days when I just simply don't have the strength to fight and those are the days that I give myself permission to stay in bed.  Otherwise, I'm up and out of bed, every day, between 4-6 a.m. without an alarm clock (other than my body).  What I am trying to do here is bring hope to the other sufferers and awareness to the normies.  I am not a bitcher by nature ... Nor do I enjoy whining ...  Because both of those breed sympathy from everyone in my immediate vicinity.  If you have been following my blog, then you should know exactly how I feel about sympathy as well as pity.  Congratulations, Bumblehead!!  You are my only reason for bitching today ... and my area is expecting 80+ mile per hour winds this afternoon!!

I have faith that you will see that I choose to fight my pain with warped humor and a Pollyanna-esque attitude, because ... I've been miserable ... and I don't like it!!  I don't want to bitch!!  Life's too short for that!!  I have faith that I will beat this dis-ease, even if it's by the skin of my teeth!!  And I would love for you to jump on this bandwagon with me!! 

Sincerely,
the crazy cripple

3 DAY LEFT UNTIL THE 2ND ANNUAL CRAZY SOCK DAY!!!!  Yesterday I went out and picked up 2 three-packs, 2 two-packs, and 4 single pairs of socks for the auction that starts on CSD2!!  If you need the info again ... here it is ...

 How else can you help support the 2nd Annual Crazy Socks Day and 12 year old RSDer, Melanie?

While out shopping for your own crazy socks to wear on January 24, 2012, purchase an extra pair or 2!!  Send Laurie (her mom) or Jenn (me) a picture(s) of the un-worn socks along with the size and value.  (lad4587@gmail.com or havefaith_91@yahoo.com)  Spirit Sparkplugs will host an online auction for all of them and forward you the winning bidder’s information so that you can send the socks directly to the winner.  This will cost you the price of the socks and shipping.  The proceeds for this auction will go Spirit Sparkplugs in Melanie’s name.  The auction will close at the end of January 2012.

For more information about the non-profit organization, Spirit Sparkplugs, visit www.spiritsparkplugs.com.  They are committed to helping children who face medical difficulties around the world.

(_|_) (_\_) (_|_) (_/_) <-- Happy Butt Dance

I have nothing to gripe about today ... nor do I have the desire to gripe even if I had something pressing to get off of my chest.  It's the middle of January, and I don't even wanna bitch about the Skank today.  All I want to do today ... is be grateful and thankful and smiley and at peace.

Time out!!  I hurt!!  I should probably clarify that real quick.  The point is that it's not bothering me like usual.  No, I'm not in remission, I didn't find a magic pill to take, nor did I have to break out the Ketamine nasal spray.  I am reaping karma and finally getting an answer to my unspecific prayer of "patience."

Today is MY day to shine ... and spoil Kiva!!  Yes, McDonald's here we come!!  (2 plain cheeseburgers for my mutt please!)  Maybe even stop for a mani/pedi for the mommie!!

I cannot even begin to explain the elation that I feel today ... and I'm not going to try!!  I will tell you that the Warrior Mama got notification today that the Penguin's gastric stim surgery is covered and set in stone; and I was finally accepted for Medicare assistance!!  We bitch, we moan, we gripe, we scream.  But in the end, when everything comes to fruition, we rejoice!!  I don't care that the wind is blowing and only gonna get worse today.  I don't care that I am leaving the house sans "bodyguard" ... I don't care that i have to run errands today.  The drama, the stress, the anxiety, the pain, the flares, the limitations ... none of them bother me today.

So what's a girl to do??  GET OUTTA THE HOUSE WOMAN!!! I have faith that each of you will experience the elation of joy and happiness ... it's the waiting that's the real bear!!  But we get there!!!  Tomorrow I may be a complete wreck, but for today, I will bid you all a fond adieu, cuz I'M OUTTA HERE!!!

5 DAYS UNTIL CSD2 ... WE NEED YOUR PICS!!!!  :D

Gross Factor Exceeded ... Probably (sorry mom)

Yesterday, I referred to RSD as a roller coaster ride and I still stand by that assessment.  I have also said, in the past, how much a good mood, a sincere smile, an honest laugh can turn a "bad pain day" into a "good pain day".  It's all a matter of perspective.  The ups and downs of the last 5 days (physical and emotional) have left me a little nauseous ... literally.  The Skank (my nickname for Mother Nature) has returned to the front range with all of her winter joys ... cold, snow, and ... wind!!!  My Advanced Warning System kicked into full gear at 4:08 this morning as I was catapulted out of bed by the overwhelming urge to vomit.  (seriously, bile is not my favorite flavor)  Whenever this warning kicks up, I know something is coming.  Something not good.  Something called "a flare"!!  I know that there is always 1 time a month that is guaranteed to set off my AWS alarm (I'll let the adults in the room attempt to decode that one) but it's still too early yet ... so something else is coming.  Remember that robot from Lost in Space??  "Danger!!  Danger, Will Robinson!!  Danger!!"??  That's what my alarm sounds like in my head.  Luckily, (hahahaha ... i said "luckily" while referring to puke!!  haha ... i kill me sometimes) ... anyway, luckily, I have a small stash of blue cylindrical barf bags that I amass after my bi-annual Ketamine nerve blocks.  NO!!  I don't re-use them!!  EW!!!  But I do ask for extras as they're wheeling me out of Day Surgery. (i'm still waiting for a few of you, you know who you are, to put together the color scheme and come up with the old slogan for Ziplock Baggies.  ... hey!!  i warned y'all that this one was gonna be gross!!)  On with my story... I usually have to carry one of these bags around with me for an hour or two until my gag reflex settles down, but today I didn't.  Why??  I DON'T KNOW!!  Oh wait ... yes I do!!  I smiled.  I still puked, but once I was able to smile, the nausea vanished.  I don't know if this will happen every time, or if I could consciously make it happen if I tried, but it happened today and I'm grateful.

Am I going to tell you what it was that made me smile? Nope!! ;)  Each of us has a different happiness catalyst, and it's up to each and every one of us to find out what our own triggers are.  The uncontrollable laughter of a child, the smell of comfort food in the crock pot, goofy pet tricks, a silly song, the realistic prospect of loving and being loved, knowing that Ziggi's is in your near future, crazy family memories, money, vacations, raising awareness, helping a friend, a cure ... whatever it takes to make you smile and forget about the pain for even a moment, FIND IT!!  Whether you're an RSDer, a RSD caregiver, a normy, or a schmuck, you can still find something to make you smile!!  That is your challenge today!!  Find out what it is that makes you smile, regardless of your mood or your health.  If you need help finding one of your own, feel free to ask me for more suggestions.  I'm full of it!! ... um ... I mean "them" ... I'm full of them!!  

I know that I will have many more visits from my AWS, it's just a fact of my life that I've accepted, but I have faith that I can overcome each of them with a smile.

6 DAYS UNTIL THE 2nd ANNUAL CRAZY SOCK DAY!!  Got yours yet??

The Plights of the Parents

I need a friggin magic wand!!  NO child should ever have to be in this much pain, and no parent should ever have to watch helplessly as their child suffers!!!  And no child should have to watch a parent suffer because of them!!!  This is not the natural course of life … THIS is RSD!!  20 years of dealing with the beast has taught me a lot about myself and my family.  It has shown me how strong I can be in the face of adversity, but it also proves to me, time and again, that I can still crumble into a blubbering pile of poop at the face of my mother when she sees me in pain.  I may be an almost 43 year old adult, but I am still her child.  However,  I contracted RSD as an adult and I was a total tomboy growing up.  My mom’s biggest concern for me, back in the day, was whether or not we had enough Band-Aids, Bactine, and calamine lotion in the medicine cabinet, not when the next ketamine infusion was scheduled and could we make it that long!!

I look at moms like the Warrior Mama and my Godsister and all I can do is shake my head!!  We are the same age-ish and all I know is feeling pain, just like their daughters; and all they know is what it looks like … and the looks of RSD are depressing, heartbreaking, gut-wrenching, stymie-ing, and, at times, awe-inspiring.  And because their children are still at home, (duh!!  they’re kids) the only thing these moms have to look at is the depressing crap!!  So what do we, the “children” with RSD do??  We learn how to act, how to wear a mask of happiness, and how to lie.  I, for one, never tell my mom how bad I really do hurt on most days … but I don’t live with my mom, so she’s not forced to see it, therefore I get away with my lies and half-truths.

On the flip-side, I look at my friends with healthy kids and think to myself, “you people had better thank your effin lucky stars that your kid is still able to play sports, go to school, run, jump, climb, ride comfortably in a car, eat, start modeling, go to birthday and holiday parties … all without fear of repercussion!!”  Don’t get me wrong, I am grateful for every healthy child out there and I am a cheerleader to no end for *ALL* kids.  But I can’t help but compare these families in my head.  RSD needs awareness NOW!!  RSD needs YOU!!  These kids need YOU!!  These parents need to know that normy parents are willing to empathize with their plight and are also willing to help ease the stress of having a child with chronic pain.

Now here’s the deal, never once have I ever asked for sympathy.  Just the opposite, in fact.  When someone starts spewing sympathetic rhetoric, I walk away.  I have to.  They don’t know!!  They think they’re being helpful by showing sympathy but in reality, they’re making us feel worse, physically and emotionally, with all of their “oh you poor thing” or “I feel terrible for you” or “I wish I could make it go away” or “I wish I could help you!” You know what, SO. DO. WE!!  But, in the words of my mother, “if wishes were horses, we’d all take a ride.”  (her own version of acceptance) ...  and I’m pretty sure that every RSDer, regardless of age, will agree with me … we don't want or need your pity!!!  We want and need you to make a difference!!

So to all of you normies out there that have uttered these words, here is your chance to help me, the Penguin, the Godniece, and the 5 million other RSDers!!
SUPPORT THE 2nd ANNUAL CRAZY SOCK DAY on January 24!!!  1 week from TODAY!!!

While out shopping for your own crazy socks to wear on January 24, 2012, purchase an extra pair or 2!!  Send Laurie (the Warrior Mama) or Jenn (me) a picture(s) of the un-worn socks along with the size and value.  (lad4587@gmail.com or havefaith_91@yahoo.com)  Spirit Sparkplugs will host an online auction for all of them and forward you the winning bidder’s information so that you can send the socks directly to the winner.  This will cost you the price of the socks and shipping.  The proceeds for this auction will go Spirit Sparkplugs in the Penguin’s name.  The auction will close at the end of January 2012.

For more information about the non-profit organization, Spirit Sparkplugs, visit www.spiritsparkplugs.com.  They are committed to helping children who face medical difficulties of all kinds around the world.

I still have faith that RSD awareness will be raised, but sometimes even my faith falters and I need to be reminded of why I fight.  Having the normy people that love me and care about me the most stand beside me, and fight with me is just the boost I need to feel right now.  Don’t tell me, SHOW me!!  Please!!!

A Brand New Day

I had to use my Ketamine nasal spray last night and I’m not happy about it.  I spent way too many years in a narcotic induced fog … to the point where it just has zero appeal to me anymore.  I do understand and accept that there will be times in my RSDism where I have to use the heavy drugs, but that doesn’t mean that I have to like it.  It’s all about fighting the good fight, whatever it takes, and never ever ever giving up!!  And “tomorrow” is always a new day!!  Pain is something with which every person in the world is familiar.  It is all part of the balance of life.  Without pain, there is no pleasure because we have nothing to which we can compare it.  Today’s pleasure is brought to you courtesy of last night’s pain.  I awoke still fuzzy in the brain but knew I could count on Bertha to clear those cobwebs.  (Bertha = my coffeemaker, in case you forgot)  However, I was so distracted by the pain and the drugs last night, that I forgot to set her up and press the timer.  I really don’t like having to wait those 5 excruciating minutes while that 1st cup of tar percolates.   But my 2nd pot is brewing now and spurring me into action for the day!!  God bless caffeine and all she has to offer!!

Today begins crunch-time for the 2nd Annual Crazy Sock Day.  8 days to go and I have just finish writing press releases for my local newspaper as well for the local paper of the Penguin and Warrior Mama in Florida.  I love RSD awareness events!!  They motivate me more than anything else on the planet.  Surprising, no?  More than my family, more than my friends, more than Kiva.  Informing the world of this devastating "dis-ease" is paramount to me.  Of course I want a cure too, but there won’t be a cure until the awareness is out there.  Everyone has heard of cancer, diabetes, MS, muscular dystrophy, fibromyalgia, Chrone’s disease, autism, and the list goes on because there are … wait for it … television commercials to help identify the diseases!!  But for RSD/CRPS there is nothing!!!  *NOTHING*!!!  And according to doctors and the McGill Pain Index, RSD is more painful than all of them!!  There are YouTube videos galore about RSD but nothing has gone mainstream and I have made it my mission to change that.  (if you look to your right on my blog page, you’ll see video links.  The picture of the young woman holding a handwritten card is the most helpful vid I’ve watched so far.)  But we need to get out there and put it in people’s faces.  I cannot do this alone and I welcome any and all help from my fellow RSDers as well as my normy friends.

How can YOU help spread awareness with me??  Message me on Facebook, email me at havefaith_91@yahoo.com, find me on Twitter @painbedamned.  Let’s start 2012 with recruiting every person we know to wear crazy socks on January 24.  If you’re a teacher, make it a classroom event.  (Houdini is!!)  If you’re a boss, make it mandatory for your employees (my dad is!!).  If you’re in public service, make sure everyone you come into contact with notices your socks (1 of my cop-friends is!!).  Make sure everyone knows that you’re doing it for 12 year old Melanie and RSDers everywhere around the world.  Make it a statement!!!!!!!!!  Raise awareness!!!!!

I have faith that CSD2 will be bigger and better than last year’s event!!  I will make it happen.  I also have faith that each and every one of you will help me too!!  WHATEVER IT TAKES, y’all!!  Let’s do this!!

The Corporeality of Trust

In general, I do not trust people easily anymore, men or women.  I used to have blind faith where humans were concerned, always wanting to see the best in them, but I have allowed myself to be in the position to be let down too many times.  This is also the reason that I have such a hard time asking for help.  I don't ask for help often and it takes a lot for me to swallow my pride and admit that I need it.  My family members (and Bosley too) are pretty solid with the physical stuff when I ask, but my most common help request of my friends has to be "distract me."  Even though I'm not in the mood to be around people on bad pain days, I still need help getting my mind off of the pain.  I can honestly say that I have 1 friend in my life that I can trust to go out of their way help me, mentally and emotionally.  I have friends that mean well, and friends that can help when it's convenient, and friends that think a distraction is an invitation to dump their shit on my doorstep (sorry Mom, but you know it's true) ... and this is where my lack of trust comes into play.  This one friend always offers me a respite from the annoying pain.  She tells me (via texts and Voxer) about what's going on with her, what movie she just saw, what book she just read, what guy she just went on a date with, what work projects she's tweaking, what words failed on Family Feud Fast Money Rounds, etc.  She asks me about what's going on in my world, but never asks me to dwell on the pain.  She asks about the other stuff!!  She understands that the pain is always there 24/7, but she knows that sometimes I just need to redirect my focus for a while until I can get better control of it.  (God bless that CaliAngel of mine!!)

Marilyn Monroe is often quoted as saying, "... if you can't handle me at my worst, then you sure as hell don't deserve me at my best." ... and I feel the exact same way!!  But there is more to that quote.  The full quote is, "I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best."  Here is how the artist formerly known as Norma Rae and I compare:  I am selfish when it comes to protecting myself; I am a little impatient ... but I try to stifle it as much as possible or make a joke out of it; I am definitely a little insecure ... ima girl, hello!!; I learn from the mistakes I've made; I'm not out of control (anymore); and on bad pain days, I think that I'm definitely hard to handle.  And if people can't or won't help with those bad days, why should I keep the Fair Weather Flockers around to enjoy the good days with me??  They sure as hell didn't help me get to those good days, so they shouldn't get to be a part of them.  Right??  Right!!

I may be tough, sassy, classy, sarcastic, often over-opinionated, loud, with a twisted brain, but I am still a girl ... with a few girl-ish insecurities, a couple abandonment issues ... and RSD.  I am not about to keep anyone around, or let anyone else into my world who has the potential to make any of those any worse than they already are.  Just because I give people a chance (or a 2nd chance, or a 3rd), absolutely does not mean that I trust them, it just means that I want to be able to trust them.  It also means that I want to give them every opportunity to earn my trust.  But there are times when I run out of chances to give (and painkillers to take) and the healthiest thing for me to do is to remove myself from the situation.  Stress breeds pain in my world ... and pain breeds more pain ... and after 20+ years of dealing with it, I have found that I need people in my inner circle who are equipped to help protect me from more pain, physically, mentally, and emotionally.  Friends will come and go and friends will try to help, and hopefully some will succeed, but until my trust has been earned, I'll keep my barriers up, my outer circle wide,  and I'll keep quoting Marilyn ... " “I am good, but not an angel. I do sin, but I am not the devil. I am just a small girl in a big world trying to find someone to love.”  (or in my case, trust too)

Today my faith lies in the realization of what is and what is not.  My corporeality is my reality and my reality requires proof of sincerity, not sympathy.  Stand up for yourselves, RSDers!!  Stand up for the ones that know you and the ones that you trust.  Protect yourselves, and don't trust blindly.  Make people earn it!!  The ones that are worth it, will do it without hesitation!!  Those are the ones that deserve our best!!

On a Mission from Gahd … and the Penguin

About 12 years ago, I met an amazing woman named Dollie.  I mention her by name only because she has since passed away.  She had RSD and diabetes.  She had developed a blood clot in her leg and it moved to her heart before the doctors could stop it.  She was a smart and goofy lady and she was also the first dual-diagnosis-advocate I’d ever met.

I worked with her to make packets of RSD information to give to non-RSD doctors, nurses, therapists, anyone that asked for more information and even for those too ignorant to admit their lack of knowledge.  I remember leaving her house with 50 of these packets one day, only to return four days later for more.

It was the week that I was “auditioning” a dermatologist for my newly developing case of psoriasis (thank you RSD), as well as the week of the I‘ve-been-on-heavy-painkillers-for-over-8-yrs-trip to the gastroenterologist.  I gave the packets to the doctors, nurses, receptionists, technicians, therapists … whatever I could do to raise awareness.  And it paid off … for the most part!!  The Derma-Dude got my little patches of psoriasis under control and had taken the info in the packet to heart.  He would tell me where he would have to touch next and he gave me a few seconds to prepare for it.  My PT and OT loved the packets!!  They shared them with the other therapists in their office as well as the in-house therapists at the hospital.  But not every medical professional received the packet with that much enthusiasm.  My gastroenterologist (who will now be known as The Gut Buster) was the worst.   He handed the packet back to me, telling me that he didn’t need to read it because I could tell him everything that was in it.  This creep (albeit very good his particular discipline) tried to schedule my colonoscopy to take place in their office the next day.  I told him that we needed to do it at the hospital with my anesthesiologist present to sedate me and then give me the nerve blocks to combat the added pain that the procedure would surely provide.  He laughed at me.  Yes, laughed AT me.  But because I stuck to my guns about it, he finally agreed.  Even all of these years later, he has still not apologized to me, but at my follow-up appointment with him, I saw the packet that I had given my anesthesiologist in the Gut Buster’s file on me.  (I gave the anesth. a packet just to show him what I was up to.)

I need to tell you what re-lit this fire under my tookis!!  While stalking the FB page of the Warrior Mama this morning for updates on the Penguin, (a nice little shout-out to her facial feeding tube stickers) I read her post about a nurse who walked into the Penguin’s room last night, unaware of RSD, and touched the girl’s socked left leg.  (The Penguin is in the hospital for her temporary gastric stimulator installation.)  From the way the post sounded, the Penguin’s scream could be heard throughout the floor.  And then, while discussing the incident with the morning nurse, she questioned the use of Ketamine as a treatment for the young Penguin.  (Lady, she’s there for her tummy, not to have you question her RSD specialist!!)  We need to stop this ignorance!!  Hence, packets!!

So many details and treatments and medications have changed and been added to the plethora of ever-developing information on RSD that I cannot re-use the packets from 12 years ago, but I can use them as a guideline to create a new one.  When I am done, I will make these packets available here for you to print out and take with you to your appointments to give to your “specialists, et al.” … and I’m sure I can grab a few of my other Bloggers to post them as well.

BUT … I cannot do this alone.  I need YOUR help, RSDers and Caregivers!!!  If you have ANY information that you think needs to be included in the packet, please email me at havefaith_91@yahoo.com.

I have faith that we will raise even more awareness this year.  Despite the heartbreaks and setbacks, as long as we band together, even from across the miles, we can make a difference, make people aware, and give ourselves and other RSDers hope in the process!!

In Search Of …

Son of a…!!! … Shut the front door!!! … GERSHWIN!!! (new creative cuss word) … Holy puss buckets!!! … OOOWWWWWWIIIEEEEEEEEEEEE!!!!!!!!!!!!

I have been seeing the same Massage Therapist, A.B.,  for the last 2 years and I LOVE her … but she moved out of state at the end of the year.  WAAAAHHHHH!!!  She listened to me and to my body.  She’d start each section with a light touch and gradually increase her strength so as not to cause me more pain.  She was the one that told me that a massage should never be the cause of pain … It was hard not to love this girl!!  She (not the company she worked for) did research on RSD so that she could continue to help me.  She was a gem and I will miss her more than my gall bladder!!  Yesterday, I called the mass-massage factory, where I found A.B. back in ‘09, to begin arduous task of finding someone to replace the irreplaceable … this is as grueling of a process as finding a new pain management doc, and heartbreaking to boot!!

I requested a massage therapist with a gentle but firm touch.  What I got was anything but!!  The woman that came out to greet me and introduce herself was a bitty little thing.  She glanced over my paperwork, looked up at me (literally) and said, “So you need a deep tissue/sports massage?”   My response?  “Um NO!!!  Where does it say that??  I need a Swedish massage with desensitizing techniques and a focus on the knots and spasms in my neck and shoulders without causing flares” (my standard request).  She didn’t ask what a flare was or glance back at my chart to see what I might have been talking about.   As a matter of fact, her tiny personage bowed up to me.  “Oh, ok!!  I can do that!!“  She was too agreeable (RED FLAG!!) and actually told me, to my face, that she could “fix me right up” (RED FLAG #2!!).  We meandered through the maze of open and closed doors to treatment rooms until we got to our destination.  She asked me all of the standard, first meeting questions and when I told her that I have RSD and that I usually scare therapists once I’ve told them what it is, she replied, “Well that don’t scare me!”  (RED FLAGS #3 AND #4!!!)  ... FYI … If you are any kind of medical professional and RSD does not scare you, you are an ignorant, cocky, egotistical, self-centered braggart that only cares about the paycheck, not the patients.  And if you have poor grammar on top of that, you are only making yourself sound more ignorant and, yes, I’ll say it, stupid!!!  But the audition process had to start somewhere, and I do believe in not judging people and giving everyone a chance to prove themselves.

OMGosh … My hand to God, this woman was evil!!  After 10 minutes of desensitization work … and after 15 minutes of what I can only describe as “hellish abuse,” I stopped her and asked her to leave the room.  Even after I had asked/told her not to use her elbows along my spine and shoulder blades, she kept doing it, telling me that this was the only way she was going to able to get through the knots.  I don’t have to lie there and take that!!  As soon as the she shut the door behind her, I started bawling.  I couldn’t help it and I couldn’t stop it.  She tried the 2 minute check-back, still crying … 5 minutes, still crying … 10 minutes, she checked on me again.  I had dried my eyes and gotten dressed.  Her jaw dropped so much I could’ve sworn that if I made just 1 can-can kick, I would have lost my size 10 shoe in her mouth … without pointing my toes.

Not wanting to hurt her feelings (ima softie like that sometimes) I chose my words carefully and said, “You did the best you could.”  I paid the $49 and gave the hillbilly harpy $3 for a tip … the 10 minutes of desensitization did feel good.  I also spoke with the supervisor and explained that if the pain didn’t subside, I would be calling back the next morning for a refund … GUESS WHAT!?!? … I’ll be calling her in about 30 minutes.

Even though I was relegated to the prone position on the heating pad for the rest of the day, I have to give a HUGE shout-out to some friends for just making me laugh through the pain … Cali Angel (even though it started out as crazy-a’d drama -very glad the Kid is ok tho, btw- it turned into almost peeing my pants laughing), Houdini (he appeared just in time to help distract me and he left when he knew that I just needed to cry alone … unplanned … unexpected … unbelievable!!), Warrior Mama (even when she’s stressed, she’ll say something at which I can’t help but giggle … frozen shoebox!!  Haha ... still going on that one too!!), TTO - The Tall One (who just can’t make up the stuff that happens in his world!!), and Kiva (that marathon version of “take a dummy for a walk” was freaking hysterical!!) ... ok, Take A Dummy For A Walk is when she chases her tail, catches it, barrel rolls with it, and side steps through the whole house ... with her tail in her mouth.  I'm sure that it's some form of doggie dementia, but i just can't bring myself to stop her!!

Pain, heartache, and confusion could have ruined my day yesterday, but I am sticking to my resolution of letting my mood fight my pain and it’s working!!  I’m still dragging my heating pad around with me this morning (along with 2 extension cords) but I have faith that the pain will ease in time.  Today’s goals are to take a shower, stay affixed to the heating pad, and fold 6 loads of laundry … notice I said nothing about putting the clothes away … I’m not looking for a miracle today, honest!!  :D      

Rallying The Troops

For the next three weeks, I will probably write and/or mention quite a bit about the 2nd Annual Crazy Sock Day celebration that will be taking place, worldwide, on January 24, 2012.  So that you don’t feel left out, here’s why…

99% of all RSDers have a “that day” … that infamous day when their lives changed forever … the day that they developed RSD.  Some RSDers curse that day, others celebrate it, but everyone dreads their RSD anniversary.  It means that another year has gone by without a cure or any sign of relief.  It means that 365 more days were suffered through, and most of those were streaked with tears but masked by smiles.   This is the very reason why I think every RSDer should ‘celebrate’ their day!!  365 more days have been SURVIVED!!!  

Down in Florida, it is no different for little 12 year old Melanie Dickens.  While at a friend’s birthday party on January 24, 2010, Melanie was walking on stilts along with her friends when she fell and sprained her left ankle.  After the sprain had healed, the pain remained … the diagnosis, RSD/CRPS.

Just to give you a quick little refresher course on the beast,  RSD/CRPS is caused by trauma to a nerve or nerves, usually in a hand or foot.  It can be brought on by a sprain, fracture, and surgical incision; or even something as insignificant as slamming a finger in a door or stubbing a toe.  It can also happen as the result of another disease, such as shingles.  RSD has been described as a condition characterized by pain that is over and beyond the normal amount of pain that accompanies the initial injury, and when the injured limb has healed, the out of proportion pain is still prominent.  In addition to the pain, other symptoms include, but are not limited to: blood flow deviations that change the color, temperature and/or skin thickness of the affected area; loss of movement (range of motion), atrophy (disfigurement), increased sweating, and dystonia (uncontrollable muscle spasms and shakes) of that same area.  RSD/CRPS is manageable but not controllable, nor is there a cure for the disease … and it can spread, within an individual’s body, to the other limbs, core, face, and even organs.  RSD/CRPS can also lay the foundation for, and incite, numerous other autoimmune diseases.  Doctors have ranked RSD/CRPS higher on the pain scale than amputation and childbirth.

Once diagnosed, Melanie began a rigorous series of physical therapies, one of which was the desensitization process of putting on a knee sock and taking it off, repeatedly.  Eventually Melanie was able to tolerate the sock and began to look at is a her safety net.  It protected her leg from the pain spiking Florida breezes and hid the often off-putting mild discoloration, while still allowing her to wear shorts in the warmer Florida climate.  But white tube socks were too boring for this mini-fashionista, and her mom knew this.  The only answer here was “crazy socks.”  Tye-dyed, striped, cartoon character splattered, multi-geometrical, you name, it, Melanie now wears it with pride.

Question:  How do you UN-depress  a pre-teen with a painfully debilitating disease??  If you are Melanie’s mother, Laurie, you round up every family member, every RSDer and RSD caregiver that you know, every family friend you can track down and you ask them to wear the craziest socks they can find on January 24, 2011.  I had the privilege and honor of being one of the first people to join the 1st Annual Crazy Sock Day craze and I was amazed at all of the pictures that were posted on Facebook showing their support for Melanie.  So when Laurie asked me if I would spearhead the 2nd Annual Cray Sock Day, I was even more honored.

Melanie’s RSD is still in her left leg, but it has also spread into her abdominal organs causing Gastroperesis.   Up until a couple of months ago, she was unable to keep any solid food down and the pain of throwing up was unbearable, so she had to have a feeding tube threaded through her nose and into her stomach.  Today she will be having a surgical procedure to have a temporary gastric stimulator put in place to “wake up her tummy.”

I will keep you updated on her progress, but I challenge you, RIGHT NOW, to either find, buy or make the craziest socks you can imagine and wear them on January 24, 2012 (3 weeks from today).  And if you’re on Facebook, feel free to search for the public group “2nd Annual Crazy Sock Day” and join in the celebration of a young lady with the spirit of a warrior while helping us to raise awareness for all who suffer from RSD!!  Crazy socks are great conversation starters and when someone comments on yours, you can say, “it’s for Melanie and RSD.”

Have faith people … If a 12 year old can do it, so can you!!

Off To A Great Start

Wow … even the final minutes of 2011 were harsh on this skinny, crippled body with it’s insane winds and barometric pressure changes.  I had sent out all of my “Happy New Year” texts and was asleep by 10:30.  Not very exciting, but very necessary.  Surprisingly, when I got up New Year’s Day morning, I did not feel like I’d gone through three rounds with Mohammed Ali in his prime … like I usually do after 80+ mile per hour winds.   What a great little turn of events for me!!  2012 is already fantastic!!

That is not to say that I am not fully and completely aware of my pain level, however.  All of the stress from the hollerdays has taken up residence in my neck and shoulders and has limited my range of motion and is trying to radiate down my arms … again.  But a mani/pedi today and a massage tomorrow are just what my physical therapist (me) ordered.  My psychologist (also me) suggested that I do whatever it takes, during this new year, to remain positive and optimistic.  A good mood always makes it easier to fight the pain!!  My pain management specialist (again, me … until I can find a real doc who listens to me as well as I do) is encouraging me to stay focused on a goal, no matter how small, and to continually set them for myself, both physically and emotionally.  My Occupational Therapist-In-Training (yep, you guessed it … me again) has set up a guideline for me to follow that includes sitting my “happy” butt down at the computer to write … and my new boss (guess who!!) has designed a “time clock” system by which I must adhere.  I would just like to take this opportunity to thank God for an actual anesthesiologist with a brain and ears and a heart … and 2 steady hands!!  (… cuz we all know I couldn’t do his job!!)

This year’s quotes to live by will be … “Whatever it takes” … “Take the bull by the horns” … and … “Faith without works is dead” … so … on that note … HAPPY NEW YEAR Y’ALL!!  May this year bring you (and yes, me too) happier days, healthier days, and all of the joys that life does have to offer!!