Looking Back ... Looking Ahead

Tomorrow my Mom and I will venture east with the Munchkins.  It has been a wonderful week with them and I know they will be back later this summer.  However, it's been a week for loss around here, but those Munchkins have really helped with distractions!!  We will travel halfway and the Bombshell will meet us.  This will be about a 10 hour trip for Mom and me so I need to make sure that I'm as prepared as I can be.  Mom got a new car with leather seats.  I hate leather seats.  I slide around them and bounce off the edges like a pinball.  So I'll be taking pillows to keep me from sliding and a blanket to protect me from the A/C.  I'll have my K-spray and meds as well as a box of kleenex and a couple bottles of water for the ride home.  Mom and I are always a wreck when we have to say goodbye.  Well, Mom's a wreck.  And when Mom's a wreck, Jenn's a wreck.  Someday we'll convince the Bombshell and the B-I-L to move closer ... it could happen.  Until then, I will be the duct tape that holds Mom together.

On Friday my RSD will be old enough to drink alcohol, I'm not saying that I will be consuming the crap, I'm just saying that it will be of age.  21 years ... Wow!!  I honestly don't remember what it is like to not be in pain.  Sad, huh?  But true.  I have lived through years of PT, OT, psychological therapy, massage therapy, acupuncture, acupressure, chiropractor treatments, years spent in bed, years spent passing out in my mashed potatoes, not being able to drive, not being able to ride in a car for long distances, relationships, break ups, non-RSD related health issues, getting drunk to forget, getting sober to remember, finding a modicum of balance, moving, packing, unpacking, relearning how to navigate stairs, relearning how to use my arms, legs, and fingers, having my liver blow up (metaphorically, of course) and gaining over 60 pounds, and then losing that 60 lbs, (i'm still trying to find balance with my weight, but I'm getting closer).  None of it was easy!!  But it has all been worth it to live the kind of independent life that I lead today.  Yes, I still have to rest and veg a lot, but I know how to manage my spoons.  I save them for the things that I have to do and I hoard them for the things that I want to do.  I learned how to do physical therapy tricks in my own home, incorporating them with my daily tasks.

After 21 years, I have experienced quite a bit with my RSD.  And although my memory of a pain-free life eludes me, I am desperately trying to make the best out of the cards that I've been dealt.  I don't remember asking for RSD, but my road has made me a tough cookie ... as well as a mature thinker.  Common sense goes a long way with RSD, and I will continue to listen to my body and adjust my life accordingly.  To those that have stayed the course with me over all these years (that would be my family), I thank you from the bottom of my heart!!  To those that have come into my life recently and and stayed and have made a point to learn more about RSD because of me, I love you!!  To those that have come and gone, I thank you too.  You have helped to make me a stronger individual that is more focused than ever in raising awareness.  

I have faith that I will continue to do the next right thing for me.  I have faith that my attempts to raise awareness will kindle a spark in the masses to do more to help us RSDers.  I have faith that I will rebound quickly from this leather seated road trip tomorrow.  And I have faith that I will reestablish a daily routine that is both beneficial and  productive.  I'm a survivor.  It's what I do.  Now ... about that cure...  

Click here to join my FU RSD day on Friday, June 1, 2012 ... aptly renamed FUR'RSDday!!  https://www.facebook.com/events/279720672122191/ 

A Memorial Day Retrospective

Do you celebrate Memorial Day with more than a bbq?  I do!  I come from a long line of military expertise.  My Dad was a Captain in the Army (Korea), my Granddad was a Captain in the Army Air Corps (WWII), my Great Granddad (and a few of his brothers) were among the first Native Americans to serve with the US Marshall's Service, and a few Great Uncles served as Colonels in the Air Corps/Air Force, and Army.  Heck, I was even born in an Army hospital.  I say "thank you" when I see a man or woman in fatigues or dress uniforms, I know the words to Taps and I sing along quietly when I hear it played (unless my nephew puts his hand over my mouth and says, "No no no" ... he likes music but doesn't like it when you sing along), and I always have flags visible in my house.  I have a flag for my porch ... but ... um ... it takes more knowledge of tools to get the bracket in place than I have in brain ... it's like math, but different.  I love the military background that my family offers me!  It makes me who I am!

But a few years ago, while mourning loss and celebrating life on Memorial Day, I realized that I, too, am a Vet ... of sorts.  I am a warrior in the battle against RSD.  With the experience that I bring to the table, I'd even go so far as to refer to myself as a "General."  Not only am I a warrior, but I live in the trenches on the front line.  No, I didn't fight for the freedom of our nation, but I do fight for the freedom from pain.  After serving in the ranks for over 20 years, on Memorial Day, I reserve the right to mourn the loss of the life I once had and the life I never had.

Surviving RSD takes the fortitude of a warrior ... a soldier.  We endure boot camp through hours upon hours of physical, occupational, and psychological therapy.  We fight for our rights within the medical and legal systems.  We have days of victory and days of defeat.  We storm the beaches on our good days and hole up in the MASH tents on our bad days.  When our emotions are in a state of flux, our bodies wage war against us.  But we Improvise, Adapt, and Overcome.  It is a never-ending and vicious cycle, and not everyone is cut out for this kind of battle.  RSDers have 1 choice, man-up or surrender.  Normies have a choice too, if they are willing to stay the course.  They can assist, they can watch, the can retreat, and they can take up arms in the fight.  In all honesty, I don't blame them when they retreat.  RSD is an ugly war, especially if you care about someone who is fighting and can't stand to watch the fallout that always ensues.  It takes an army of support to help us succeed ... let me rephrase that, it takes an army of Normie's support to help us succeed.  We, the RSDers, form our own troops of support, compassion, and understanding.  But it's the Normies that can fight in ways that we cannot ... the physical ways.

I have faith that I will continue this battle until the war is won.  There are no Peace Talks.  No Treaties are available with RSD.  It is a war that will rage on ... and on ... and on.  I have faith that I will recover from my most recent barrage of emotion and pain.  After all, this Friday I will celebrate 21 years of surviving the beast, RSD.  I invite you all to join me in this celebration.  Go to https://www.facebook.com/events/279720672122191/ and help Kiva and I spread awareness and have some stylish fun doing it!!

Dear Dr Oz...Love, Kiva

Dear Dr. Oz,

My name is Kiva.  I am a 5 year old Sheagle (German Shepherd/Beagle) that is proud to call 1 of over 1 million Americans diagnosed with RSD, "Mommie."  On June 1, 2012, at the age of 43, she will celebrate (yes, celebrate!!) her 21st anniversary with RSD.  I have only been taking care of her for the last 4.5 years, but I know her story like I know the bottom of my food bowl.  I would like to take this opportunity to thank you for finally giving RSD some recognition via mainstream media ... but, I must tell you that in all of our time together, I have not seen my Mommie as emotionally torn as she has been since she watched your episode with Paula Abdul.

My Mommie actually cried when Paula first said those three little letters that she has longed to hear on tv for so many years, RSD.  I hear her rant every time a commercial comes on talking about Fibromyalgia, Crohn's, Autism, Depression, etc.  She hangs her head and asks, "Where's ours?  Who's going to speak out for US?"  And you, you wonderful man, you were the one to give RSD a voice!  But ... Mommie says that, just like with Jack in Mr. Mom, you're intentions are commendable but ... you're doing it wrong.

I feel the need to inform you that when Paula talked about putting ice on her neck/back, my Mommie cringed and gasped and her exact words words were, "Oh hell no!"  My Mommie is friends with numerous other RSDers and neither she, nor the ones that she knows, can use ice.  It sends them into a full flare ... and on 2 occasions, ice is what caused my Mommie's RSD to spread to other appendages.  Personally, I liked the blue, red, and yellow lighty thingys that you used, and Mommie said that she liked that visual too.  You did an excellent job showing how the nerves don't let go of the pain ... ever.  My Mommie went through rigorous physical therapies and has had over 500 nerve blocks in her 20+ year battle.  She was a college student, a waitress/bartender, an athlete and an aspiring model when she got her right thumb slammed in a refrigerator door and yanked it out.  She did receive an early diagnosis, but her stubborn 22 yr old jock-brain told her to keep living as she had been.  Now she has RSD from her neck to her toes.  You never talked about how RSD can spread to other parts of the body, including internal organs.  Mommie feels that you made Paula seem like the "norm" when there is no "norm" for RSD.  A healthy diet is great to aid in finding balance with RSD but it is not a cure.  You didn't explain how RSD is an "invisible illness."  You didn't mention that there is no known cure.  You touched on skin sensitivity, but you bear-hugged Paula, which sends the wrong message to those without RSD that RSDers can  be hugged and touched like that, when in reality, they cannot!!  My Mommie can't even shake paws with me without feeling an increase of pain.  You also failed to mention that RSD can cause skin discoloration and abnormal swelling, as well as spasms, tremors, and temperature changes.  You also failed to try to give Ketamine a good name.  Most RSDers that have tried some form of Ketamine treatment, either through nerve blocks and nasal sprays (like my Mommie), or infusions, or induced comas, have received a certain amount of relief from the drug.  You also omitted that depression goes paw-in-paw with RSD.  You didn't touch on the fact that some people lose all hope with RSD and commit suicide.

But, as Mommie says, it's a start!!  Much like taking the stem out of an apple before you peel, core, eat and digest the apple, it's a start!!  Please Dr. Oz, please, please, puh-leeeeease do a follow-up show that explains RSD better to the people who are unfamiliar with it.  Mommie thinks that you could leave out the Simon Cowell banter too.  Feel free to take a look back at all of the blogs that Mommie and I have written, because we take on all sides of the disease and try to explain to the Normies what living with RSD is like.

Mommie and I have faith that, even you refuse to do a follow-up show, we will continue to provide awareness for the masses whenever and wherever possible.  We've made it this long without any help, we can keep going without it ... but your help would make it MUCH easier to get the word out.  Thank you again for bringing RSD into the light of day.  It is a start!!  

A Road I Know

Have you ever asked yourself, "What next?"  Not in the bad way (we all do that) but in the good way??  I had a great weekend, storm and all!!  My Team and I hosted a garage sale on a rainy and very breezy Saturday.  Our goal was that the proceeds would fund the 1st round of plants for the garden.  So Saturday evening we trekked to Loveland and purchased tomatoes, cucumbers, squash, bell peppers, cherry peppers, jalapeno peppers, sage, rosemary, mint, cilantro, basil, and 2 hanging petunia plants.  (keep in mind that this is after the garage sale and a storm ... which elevated my pain levels, but I was able to keep them in check.)  Even dropping my iPhone and spiderwebbing the screen couldn't deter my mood.  On Sunday, we journeyed to Boulder to try to get my phone fixed.  Everything still worked, I just had to play bob-and-weave to see around the cracks.  Needless to say, I am not due for an upgrade until August and a new screen would have cost me $99 + Boulder Tax ... so I opted for a screen protector to keep the pieces from slicing my sensitive fingertips, and a new case to help it hold on a little tighter.  $40 later, I'm still in a good mood even though my niece is probably going to want to add a Band-aid to my phone when they get to town this week.  My Team rototilled the garden as I planted the herbs in the hanging pots that he made for me.  As he began to plant the veggies, I headed inside to start cooking dinner.  I was passed out on the couch before 9 last night and I hadn't even taken my Ketamine nasal spray yet.

I awoke this morning knowing that I need to take the next 3 days to conserve my spoons before the Munchkins get here.  I LOVE being on Nanny-Duty, but, even more-so right now, I LOVE that my Dad went with my Mom this time to go and get them!!  I saw on the news this morning that Kansas had about 12 tornadoes yesterday and I am grateful to not have been there to feel any of it!!  The past 2 years my Mom and I have gone to help take care of the twins and help my sister, the Bombshell, close up her Kindergarten classroom for the summer.  And both years, I had to summon up every ounce of gumption I could to withstand the spring storms for which Kansas is notorious.

Anyhooooo ... After remembering to schedule a lot of down time through Wednesday night, I started thinking to myself, "Now what?"  Surprisingly, I have energy today!!  But I know that I if I spend it, I'll be toast when my favorite 2-year-olds get here.  I made the bed, loaded and started the dishwasher, and I'll probably do something with my clothes today, although I'm not quite sure what.  I may just have a staring contest with them, but then again, I may sort and organize them ... it could happen!!  But what in the sam-hill-heck am I going to do with my brain that won't stop??  And then H. called.  We have been working together towards raising RSD awareness and funding research towards a cure for quite a few years, and the tides are turning in our favor.  (the Warrior Mama, the Bee, H., and I have been working cyber-side by cyber-side for over 2 years.)  I can't go into specifics yet but I can tell you that I am back on board (literally and figuratively) and I am ready to pick up my warrior sword and fight the good fight ... with my brain!!  Saving spoons while writing is one of my all-time favorite pastimes and I have my constructive outlet again.  (Stay tuned, things are about to get really REALLY good!!)

Despite RSD, I am still living and surviving and fighting.  I will not give up, I will not give in, I will not go gently into that good night.  I will rage against the dying of the "light"!!  I have faith that this not-so-new road will lead us to great things.  I tried to quit, not once, not twice, but 3 times, and these amazing women have coerced me and welcomed me back each time!!  I have faith that these friends for life will keep me motivated and focused ... and together, we will get the awareness and research that ALL RSDers deserve.

Let's Play "Define-a-Flare"

After 4 days of cooler to cold temps, grey skies, rain, and wind, the warm sun has finally graced us with it's presence.  My toes have finally regained their normal level of feeling (and color) and my ankles are beginning to thaw, though they're still rattly as all get out.  This, in and of itself, is a "flare."  There are a ton of different types of flares when dealing with RSD, and not all of them are of the "physical" variety.  True story.  Alas, most of them are "physical" and they can be quite a pain in the oostakaka. (is that better, Mom??)  What's really kinda scary about all of it is this ... I know for a fact that I have not experienced every type of flare known to RSDers (and I've experienced a buttload of them), so without input from the masses, I can only speak for the types of flares that I, myself, have experienced.

The word "flare" (and it's conjugated forms) can be used as a noun as well as a verb.  v- "1. to blaze or burn with a sudden unsteady flame.  2. to burst out into sudden, fierce emotion.  3. to spread gradually outward.  example: "the pain in my legs flared." ... n- "4. a flaring or swaying flame or light.  5a. a blaze of fire or light used as a signal or for illumination.  5b. a device producing such a blaze.  6. a sudden burst, as of anger.  7. outward curvature." ... example: "This flare came out of nowhere." This is not to be confused with the word "flair" which is only a noun that means "1. natural talent or aptitude.  2. smartness of style or manner."  There is absolutely nothing aptitude-inal or stylish about a flare!!  Trust me!!  There is also the phrase "flare-up" which we are all too familiar with as well.  Flare-up in a noun that simply means "a sudden burst or outbreak."  (yes, I went to public school where I was taught: parts of speech, spelling, and grammar ... and I still use them to this day!!  Any 'mistakes' that I make are on purpose.  I learned how to look words up in a dictionary and a thesaurus ... not Google and Wikipedia ... yes, I am that old!!)

Needless to say, I have come up with some names and definitions for some of the flares that I have experienced over the last 20 years.  You've read this far, might as well read the rest, right??

Vortex Flare - when one centralized spot on an appendage goes into muscle spasm and feels like there's a black hole inside the bone of that appendage that is sucking everything into it with more power than a Dyson vacuum.

Electrical Flare - the way your body would feel if you stuck your finger in a light socket ... and left it there.

Fireworks Flare - the feeling of blazing fireworks going off under your skin ... over and over and over again.

Frosted Tuning Fork Flare - when your bones feel like they are frozen and in a state of constant vibration.

Hippy-Hippy-Shake Flare - when 1 or more parts of your body go into dystonic attack (uncontrollable shaking and spasming).

Fetal Flare - when every muscle and joint in the body hurt so bad all you can do is curl up in the fetal position and cry.

PMS Flare - as that time of the month approaches, both physical and emotional hyper-sensitivity are heightened and hair-trigger reactions can be lethal.

Gusher Flare - when you can't stop crying no matter how hard you try and the violent sobbing causes pulled muscles and even more pain.

Prickly Flare - that pins-and-needles feeling that does not go away ... not even by smacking the appendage on a hard surface in the attempt to "wake it up" because the mere thought of smacking said appendage sends waves of nausea over you.

WTF Flare - when you experience one or more of the aforementioned flares and no one believes you and you want to scream "WTF" in their faces.

Flare Deficiency - when every bit of the pain is at a normal and manageable level with nothing out of the ordinary ... aka Good Pain Day.

So ... there are just a few of my own personal definitions.  Fell free to tell me a few of yours, if you have any.  Try to make it humorous, if at all possible.  (because reality is too damn depressing already)  I have faith that my askewed sense of humor will continue to get me through the final stages of of the Frosted Tuning Fork Flare in my ankles.  I also have faith that I will finally get back to a 2 sometime today after I soak up some natural vitamin D to expedite the process!!

Nuthin

I got nuthin.  It's cold, windy, cloudy, and the rain is moving in.  This is the 1st cold-front that I've really felt since my blocks.  And here's the kicker ... it's in my ankles and my toes.  Not my feet, not my legs, not my arms ... just my ankles and toes.  In reality, my pain is only at a 4 ... but compared to the 2 I was feeling for a month, it hurts ... and gosh darn it it's annoying!!  I've already got the heating pad working on my back (the new couch sux!!) so I guess I'll just cocoon myself in the down comforter and let the radiating heat absorb me.

See??  Nuthin!!  But I have faith that tomorrow will be a brand new day filled with brand new promises.

Hooters Hears a "Huh"

I am a tall, skinny, flat-chested, flat-assed, pain-riddled woman that is comfortable in her own skin ... unless it's during an RSD flare, in which case I'd rather rip off every inch of my skin and submerge myself in fire extinguisher foam and Lidocaine cream.  In my younger years (the 1st 10 yrs of my RSD life), I was self-conscious, jealous, and retaliative.  I had no self-worth and no reason to trust men ... or women.  But after spending some quality time with myself (aka: the 3 years that I spent trapped in bed due to pain and the 3 weeks that I spent in the "Life Management Unit" to get off of pain killers and booze) I came to the conclusion that those traits were, not only unbecoming, but they were stressing me out and making my pain worse.  I absolutely, positively had to let it go!!  I needed to find acceptance in the fact that I cannot control other people's thoughts or actions.  Hell, I can't even control my own thoughts on some days, but I have the power to control whether or not I act upon them.  I found that if I made a joke of the situation, it was easier for me deal with the jealousy and lack of self-worth.  And if I made fun of myself in the process, I could put the people around me at ease ... instead of them saying, "Holy crap!!  What a bitch!!"

Here's the deal ... most people know when they are acting or have acted like an idiot, because their humiliation causes them to avoid the situation as well as the other people involved in that situation.  I know this because I used to be that way myself.  These days I will admit my faults, apologize if I need to, make a joke out of it, and move on.  If the other person/people continue to judge me after that, it is no longer my problem, it's theirs.  I'll be judged by God when I die, their opinion means nothing to me anymore.  Also in my former life, I worked in restaurants and bars as a waitress, bartender, manager, and cook.  I know the difference between slow, busy, and in-the-weeds.  I know the common excuses given by servers when customers ask questions and I kinda get a kick out of calling them on their BS ... after the food has been delivered, of course.

That being said, My Team and I went to Hooters last night for dinner.  Neither of us was in the mood to cook and the thought of wings and fried pickles had our mouths watering.  As he was driving he turned to me and asked, "Are you sure you're ok with going to Hooters?"  I replied, "Babe, remember, I'm the one that would go to a strip club with you and be ok with it."  First of all, I love Hooter's food ... Plus they have a lot of tv's for my sports watching pleasure!!  And second of all, if My Team wants to look, he can look!!  If I want to look, I can look.  We both know where our shoes end up at night ... right next to each other.  I chalk this up to Trust and Maturity ... I highly recommend trying both at the same time!!  The parking lot was pretty full but the restaurant was only at half capacity.  I counted 6 'active' tank-top-wearing, booty-short-clad, young servers as well as a couple of girls that had already been "cut."  We were greeted by a bubbly brunette and told to sit anywhere.  We chose a 6-top table off to the side and copped a squat.  Our waitress was an attractive gal with bottle blond long hair and the signature Hooter's boobs and onion-butt.  Aaaaaaaaand then she opened her mouth to speak.  The tone of her voice was normal but her venom dripping attitude was a little off-putting.  She acted as though we were an inconvenience to her night.  My Team had a couple beers and she had a new one on the table for him before the 1st one was finished.  I had a Coke and she never even offered me a refill.  I counted, she had 4 occupied tables, and yet, 15 minutes after we received our chosen beverages, My Team had to flag her down so we could order food.  Did you know that Hooters doesn't have an appetizer sampler platter??  Well you do now!!  And so do we after having the waitress look at us like we were on crack as she spewed, "No!" when we asked.  Let me rephrase that, she only made eye contact with My Team until this question, and then I was the one who got the evil crack-look.  She turned her attention back to My Team and took our order of fried pickles, tater-tots, and wings ... and vanished.  15 minutes later another blond beauty (this one was a natural blond, we could just tell) brought us our food with a smile and a cheery disposition.  5 minutes later our waitress did a "drive-by,' backed up, asked us how the food was, and was gone before we could answer.  (We were just grateful that the food was dang good!!)  Needless to say that when she dropped off the bill, she put it in front of My Team.  I reached across the table to grab the check and I could have sworn that I heard her jaw hit our table.  (I was holding a gift card and my credit card, btw.)  She was toast and she knew it.  Remember when I said that I can't always control my thoughts??  Just then my thoughts started doing the Happy Butt Dance (_\_) (_/_) (_\_) (_/_) ... I didn't even try to stop them.  Needless to say, I did tip her, but only the bare minimum ... 10%.

I have faith that our waitress from last night did not learn her lesson and will continue to shoot herself in the foot every time she 2nd guesses another female customer.  I have faith that My Team and I will return to Hooters and opt out of sitting her section.  We will sit where the waitress appears to be fun and outgoing and I will leave her a tip worth bragging about to the rest of the staff ... I guess I'm still a little retaliative ... I'll try to work on that, k??

Jenn Can Cook

As an RSDer, I take nothing for granted.  I am grateful for the little things and pleasantly stunned by the big things.  So when I have "good" days, I make it my mission to do something that I can take pride in and that I know I do well ... like cooking.  Making last night's dinner of stuffed pork chops, corn on the cob, and brown rice was one of those "little things" that renewed that spark within me which became a "big thing."  Thanks to the culinary Meat-and-Potato-ness of my maternal grandmother, along with her excellent teaching skills, I turned out to be quite the creative cook ... and the best part of it is that she taught me the "no recipe required" technique.  (This drives my Mom up a wall ... I guess that particular gene skipped over her!!)

For a time I owned my own catering business.  I made up almost every single one of my recipes.  I would think up something that sounded good to me, look up 2 or 3 recipes for it in cookbooks or online, and find a way to combine my fave ingredients and techniques.  Spinach/Artichoke Dip, Kahlua Pig (no alcohol, get over it!!), 7 Layer Dip, and Hot and Spicy Meatballs, Homemade Mac and Cheese ... just to name a few.  I even had the email address of JennCanCook for that period of my life.  This was when my RSD was still centralized in my right arm and had not yet spread.  As the years passed, and the RSD spread, my cooking prowess waned.  I couldn't chop, stir, or stand.  I couldn't lift pans, skillets, or crockpots.  I turned my back on everything in the kitchen except for the coffee pot. 

About 4 years ago, just after my divorce was final and right after I started getting Ketamine in my nerve blocks, I found myself staring into the depths of my refrigerator and cupboards, looking for ... inspiration.  I'm not sure which came on 1st, the light bulb in the fridge or the light bulb above my head, but that was the moment when I realized that I could still cook if I found a way to make things easier on myself.  My family had been giving me cooking gadgets as gifts in the hopes of getting me back into an apron.  (yes, I always wear an apron when cooking ... just in case!!)  I pulled all of my gadgets out of the cupboards and drawers, picked out the ones that only made my life easier (I had to say goodbye to my Pampered Chef stoneware), boxed up the rest, got out the crockpot pieces, assembled them, and made my 1st Kahlua Pig in years.  I felt like the Bionic Woman.  After that I kinda stumbled into the world of dog treat making as well ... Kiva's a huge fan of that one!!

The reality of it is that it is impossible for me to cook every day, so when I am able to weather the kitchen, I just want to keep going and make as many things as I can before I run out of spoons (not the cooking kind).  Even when I have a string of good days, I need to remember to spend spoons wisely.  If I want to go to a party or a concert or a ball game, I, categorically, will not make anything more involved than take-out pizza the night before.  I don't necessarily like to have to think in those terms, but this is my reality, and has been for quite some time, so I'm used to it.  Finding that happy medium and "knowledge" didn't happen overnight, it took trial and error to find balance.  And if a former alcoholic like me can find balance, anyone can!!

I have faith that my days will continue to get better.  I have faith that the season of re-honing my culinary skills has arrived.  I have faith that I can inspire other RSDers to find easier ways to recapture doing a few of  the things that they once loved to do.  As my friends Raspberry Shortcake says, "it's not about what I can't do anymore, it's about what I can do today."    

Giving Up Is Not An Option

As there are no actual statistics proving that the leading killer of RSD patients is suicide, we are such a tight knit community that when one of us does take our own life, we are all rocked by the fallout.  That  being said, another RSDer has taken her own life.  This makes 2 in as many weeks.  To my knowledge, RSD itself does not kill us, the pain just makes us wish we were dead (sometimes).  The other known disruptor of life is 'overdose.'  An RSDer just wants the pain to go away and if 1 pill works a little bit, 2 will work a little better, and 3 or more might make everything "ok." ... NOT!!

I, for one, do not believe that suicide is an answer.  Even though we still have no cure, suicide, in my mind, is a permanent solution to a temporary problem.  My pain is not always a 10, which makes me grateful for a 9 and uber-appreciative of this 2 that I've still got going!!  My 1st memory of dealing with a suicide that directly affected my own life came in 2000 when one of Houdini's best friends lost all hope mere weeks before their senior year in high school.  His pain was mental and emotional.  My 2nd experience was my own cousin in the wee hours of the morning on Christmas Eve 2009.  She had Fibro, potassium deficiency, blood clots, and a few other health issues.  I cannot begin to tell you how pissed I am that she gave up and took the chickenshit way out.  (sorry Mom, but we've been over this)  There are people who have experienced similar pain issues, and they are still boot-scootin to the best of their ability.  It's not that we are stronger or our pain isn't as bad as those who give up, we just choose to keep fighting because to us, suicide is absolutely, positively not an option.  It is selfish ... period.  The true victims are those left behind with broken hearts and unanswered questions.  It is up to the RSDer to communicate and maturely articulate what they are feeling.  Normies won't listen to or hear us if we're hysterical.  It is up to the Normies to pay attention to what we are saying without judgement and condescending tones.

Unfortunaely, RSD is a family disease.  It directly affect parents, siblings, spouses/significant others, children, grandchildren, nieces and nephews, aunts and uncles, grandparents, and in-laws.  If an RSDer looses hope, it is usually because they do not have the support that they need from their Normies.  These same family members accuse us of lying about and/or exaggerating our pain levels.  They accuse us of being hypochondriacs.  Their normal bodies and brains see our need for pain meds as "addiction."  They view us as rude and anti-social when we are physically unable to attend family functions ... or when we do attend, we are standoffish and overly emotional because, sometimes ... most times, hugs and handshakes hurt like a sumbitch and make us want to cower in a corner.  The more awareness that can be shared within the family unit, the better our chances of surviving this beast!!

A couple of women have started an RSD suicide outreach program through Facebook.  I think this is a genius idea!!  Regular suicide hotlines might not be in tune with the dynamic emphasis of a pain riddled existence like RSD.  So having RSDers who have been there/done that/got the t-shirt can counsel those who are struggling with fighting through the pain.  I have asked for permission to include the RSD suicide link here but have not heard back from the administrators yet.

I have faith that I will not succumb to suicide!! (honestly, I'm too afraid of missing out on something really really cool!!)  I have faith that I will volunteer my time to this newly formed suicide hotline.  I have faith that I will never be ok with someone killing themselves and I will continue to cuss repeatedly when I hear of it happening.  Faith, Hope and Love are monetarily "free" ... it's the mental and emotional cost that could use a good Section 8 effect!!

Kiva's Kwandry

Who is this woman and what has she done with my Mommie??  No really ... Mommie???  Mooooooooomie!!!  MOMMIE!!!  Where are you??  There's a crazy person sitting in your spot and she looks just like you!!  I want my Mommie back, dang it!!!  This impostor is starting to scare me.  She goes to baseball games, garage sales, grocery stores, swap meets, and BBQ's.  She cleans multiple rooms in a day (including vacuuming), gives me a bath, makes dinner, gets food ready for lunches during the week, does laundry, and clips coupons.  She doesn't like the cold, but she's not complaining about it.  This is not my Mommie!!

Then again, maybe this lunatic is my Mommie and I just forgot how active she can be when she feels good.  I mean, I'm still getting the attention that I demand, there's crazy acapella music playing, and the coffee pot has not turned off yet, so it really truly could be her!!

Let me just tell you what Lunatic Mommie is up to today ... first of all, she's still waiting for her Soc. Sec. check.  A week ago she requested that 1 be reissued and today or tomorrow would be the days that she'd get it.  If  it comes today, she has a list longer than her legs of bills to pay, groceries to buy, and things to do.  Since it's rainy and cold today she probably won't get a pedicure or a massage, but she will definitely treat herself to a trip to Ziggi's in between all of her errands ... 3 or 4 times ...  IF this is my real Mommie, that is. 

Uh oh ... wait a minute ... hold the phone ... she just brought out the space heater ... and sweats ... it IS my real Mommie!!  It is, it is!!!  And ... and ... and ... there's the Ketamine nasal spray ... and ... oh look!!  Fuzzy Socks!!  Oh Mommie, I missed you!!  Let's go lie down until you warm up and start to feel better, ok Mommie??

I have faith that Lunatic Mommie will be back just as soon as it warms up again.  I have faith that, at some point, my bladder will get so full that I won't mind going out into the rain and mud to go potty.  I have faith that Mommie will get her bills paid this week and she'll stop referring to the woman at SSA as "the mad cow."  Crazy only lasts for so long before RSD Reality comes back into play ... Game On, Mommie!!     

 

 

Back To Work

Some days the words spew from my brain like pea soup from Linda Blair's skeletal face.  Other days it's more like a forced poop.  Today is an "other" day.

But the good news is that I am getting further along in my book writing.  My Pimp, she knows who she is, has been suggesting this for a few months now and I can honestly say that it is going very well ... until it's time for me to blog.  My poor brain just gets so overwhelmed with nonsense that it requires a PC, a laptop, and my smart phone to keep my nonsensical thoughts organized.  So the next time you ask me, "what's up??" and I give you the deer in the headlights look, you'll know that I'm missing the applicable computer that has that particular response on it.

Meanwhile FUR'RSDday is set in stone!!  If you'd like to join the festivities, go to https://www.facebook.com/events/279720672122191/ for all of the nitty gritty details and click on "Join"!!  Feel free to "share" it with your Facebook friends and family members.  Not many people can say that they are a 21 year survivor of RSD, and this milestone in my life really needs to be celebrated!!

Ok, back to the laptop before these brain fart gasses cloud the great ideas that I'm having!!  I have faith that today will be a good day ... dammit!!  OH ... and a HUGE shout out to CaliAngel on her birfday today!!  Kiva and I love you SO much!!

Just Another Day In The Life

How does outside stress affect an RSDer??  Let me count the ways!!  My Social Security check is still a no-show.  The arrival (or lack thereof) of mail is not usually a catalyst for pain, but then again, there is nothing "usual" about RSD.  I am only 11 days into my nerve blocks and my feet are beginning to buzz me into a flare.  I know what to do to offset the flare and I know that this flare is only temporary, but holy mother puss buckets, it's annoying!!  Maybe it's a good thing that my check didn't come yesterday.  I don't think my feet could handle the pressure of walking through the grocery store and the vibration of riding in a car today.  But then again, maybe if I had gotten my check, the flare wouldn't even have had time to become a flicker.  Alas, the point is moot because the check is not here and the flare is.  Son of a motherless goat!!

But there are still lots of things to report from the homefront.  FUR'RSDday is about to get an event page ... as soon as I can come up with the perfect wording for it; my Godniece, the Steampunk Princess, will be celebrating her 4th RSD anniversary on May 12 and is having a Superhero themed day so I'm thinking of going old-school and tying a large bath towel around my neck and wearing swim goggles ... SupeRSDork to the rescue!!  But also, the SP and her momma, the Maestro Coquette, or MC for short (this one is a multifaceted nickname), are leaving the Southern comforts of home and family and heading to RSD Bootcamp in PA for 2-6 weeks, depending on the SP's progress.  This is a huge step for them and my thoughts and prayers will be them and the rest of my Godfamily as they weather the miles of separation and isolation.  Also on tap for this week is my 1st MLB adventure in almost 10 years.  On Friday, My Team and I will be 2 of many in attendance at Coors Field to watch the Colorado Rockies take on the Hotlanta Braves.  I have not gone to a game since my RSD spread into my legs and I categorically refuse to watch regular season baseball on tv, so, needless to say, I am WAY psyched to be able to partake of the Rox again!!  And ... as I continue to try to make the necessary arrangements for the private fuRSDday celebration, I am saddened and depressed by the thought that my CaliAngel will probably not be able to come back in time.  It's not that I won't see her at all this summer, we have our 25th high school reunion in a few months, but she won't be here for me!!  Selfish, I know, but I just love that girl and I will always want her with me on June 1, 20any-year!!

Who knows what the rest of this day will bring; and whether it's good, bad, or indifferent, I have my favorite canine snoring at my feet, good music in the background, good aromas from Daphne (the coffeepot at the Oasis), sunshine trying to split the clouds, and an amazing man to gaze upon at the end of the day.  I have faith that in 7-10 days I will get my stinkin check and get my bills taken care of.  I have faith that the Steampunk Princess and the Maestro Croquette will have a safe trip north where they will finally be able to get the answers and treatments that they deserve.  There is always something to which we can look forward, even on the grayest of days.  Heads high, chins up, smiles faked ... and away we go!!