I'm Not Perfect, Trust Me

I think that I have gotten too good at hiding my pain, worry, stress, and physical insecurities.  This is not a good thing.  This is me, publicly admitting a fault, and I'm not entirely sure how to fix it.  However, I am not admitting defeat.  Honestly, I'm flummoxed, but this is something that I really need to decipher for myself and then I need to figure out how to accurately convey my findings.

I thought that by starting this blog, becoming an advocate, displaying my use of the Spoon Theory, and living the right life for me, that I could provide my family with some insight into my world of picking my battles, what my pain is like, and how much effort goes into each and every decision that I have to make.  I also hoped that thinking in terms of "spoons" would help my family cope with the restrictions that will follow my Dad's surgery.  I had emailed the Spoon Theory link to everyone in my family a couple of weeks ago, with the hope that it would offer some comfort and insight for all of us.  At dinner the other night, only my Mom and my Team knew what I was I talking about when I mentioned "spoons."  Everyone else looked at me like I owed them money and was speaking in tongues.  What I should have done was go straight to my folks' silverware drawer to gather up every spoon I could find and have them physically hold the spoons and then feel the loss as I take one away for every little detail.  But it was a family Funday and I consciously made the decision that the timing was inappropriate.  Selfishly, that particular decision bit me in the oostakaka yesterday in the waiting room of one of the fanciest surgical facilities I have ever seen.

I had saved up every "spoon" I could muster, was completely ready for any personal emergency regarding my RSD issues, and had my game face on for my family.  About 2 hours into Dad's surgery, I felt a spasm in my lower back on the right side.  I was prepared!!  I got into my Go-Bag and got a HeatWrap and Instant Heat Pad out and asked my sister if she'd give me a hand with it in the restroom.  30 minutes later I lost a unforeseen battle with a pleather chaise chair/lounger thingy.  It was a total "freak accident" as my Mom called it.  I was sitting in the boxy chair that had a tab in front that allowed me to pull out a foot rest and the chair turned into a chaise lounge.  I had stood up for some reason, I can't remember why, and (thank you RSD) I got kinda wobbly so I sat down ... on the foot rest ... and it collapsed under my immense weight.  (can't you just hear the sarcasm dripping from my voice?  HA!!)  This falter really jostled my lower back (already in spasm) and my right hip to the point of causing weakness and elevated pain to my upper right leg.  Talk about a setback!!  But Mom was the only one to acknowledge that something had happened.  It seemed to everyone else that I just "fell with tears."  When we were finally called in to the consult room to discuss Dad's surgery with the surgeon, to add insult to injury (literally), I felt shunned and excluded until I made my voice heard, and then I was told to "be nice" ... who me??  I totally did not mean to come across as snippy or mean and that was only understood by one person in the room.  I was in pain and I had questions of my own about Dad's recovery for which I wanted answers.  As soon as the consult was over and we were assured of Dad's progress and cooperativeness during the surgery, I pulled my Mom aside to apologize.  That was absolutely not the time for me to remove my mask.  I felt horrid for what I was I feeling, and whether or not I was indeed showing it, I needed to tell her how sorry I was.

I am a natural worrier.  I come by it honestly.  In these last 3 years of my coherency, I have better handled my worry and found ways to redirect it as much as possible through pacing, writing, practicing bio-feedback, listening to my Pain Day playlist, and watching my "feel good movies."  None of which I did yesterday.  Totally my bad!!  During my niece's surgeries, my parent's travels, my brother's trauma, and my own health issues, both RSD and upper respiratory, my concern has lied in my family and how they are coping.  So I downplay my own issues to give them my support.  Throughout Da Gurl's surgeries, I was worried about my sister who was worried about her daughter.  I was worried about my Mom and Dad who were worried about their daughter and granddaughter.  My parents numerous travels to and from Kansas have become "normal" but that doesn't mean that I'm "ok" with it all of the time.  I worry about my brother's head, post concussion.  I worry about my parents who worry about my brother.  Why I didn't combat my worry/stress/pain in a better fashion yesterday completely escapes me.  I am not perfect but dammit I am better than that and I know it!!

I have faith that I will find the answers to the mysteries of my insecurities.  This is, most definitely, a learning experience and hopefully I will be more prepared for future worries, God forbid!!  I have faith that this particular post will piss a few people off, but this is my diary about how I deal with my life and my RSD.  I am merely showing my disappointment in myself for not conveying my own feelings and opinions in a more constructive manner. I have faith in myself to make the right decisions for me and I hope that the people that mean the most to me will do their own due diligence regarding the Spoon Theory.  If I can't get my blood relations to understand, maybe I need to rethink my own objectives.  So much thinking, so little time!!  (yowza!!)

Killing Ducks

Stress-wise, this week could, quite possibly, suck, so I've taken some steps to help relieve some of the stress before it has a chance to bite me in the butt.  Some stress will be inevitable but I will handle it to the best of my ability … and with the help and support of my Team and my family.  Tomorrow my dad undergoes surgery.  My sister and her family drove in on Saturday and last night we had our Sunday-Funday Family Night that we usually only get to do during their summer vacation.  Eight adult bodies and 2 Munchkins gathered around the folks’ dinning room table for grilled chicken, pasta with pesto, green beans … and ... “Birday Partay,” as my nephew calls it, and “Kek,”(cake) as my niece calls it!!  (From Jan. 23-Feb. 23 our fam celebrates 5 birthdays, and for the 1st time in a long time, we were able to celebrate them all together.)  It was a great, and much needed, night of “decompression” for all of us!!

Looming high above, however, is …ugh … stress!!  I’ve said it before and I’ll say it again … Stress sucks but it sucks even more when you’ve got a chronic pain disease like RSD.  But … I have already been pro-active on getting my own ducks in a row so that I can kill 'em and focus on my family this week.  Kiva will be spending a few days with Unca D and Auntie C so that I don’t have to worry about whether or not she’s eating, getting outside at the appropriate moments, and staying out of the trash (you haven‘t experienced 'gross' until you come home after a long day to coffee grounds, cig butts and ashes, Kleenexes, q-tips, and “other things” strewn through house.)  I know she will be well loved and attended to and I cannot begin to tell you all what a relief that already is to me.  (the one problem is that Miss Kiva had better not be expecting those 2 mile walks that she gets with them when she gets back to me … it’s friggin winter!!  Helloooooo!!!)  I will miss her for a couple days, but my spoons need to be spent on humans this week and my Team is going to have his hands full holding together a sick, stressed, flaring girlfriend and working his day job. (don't worry, I've already warned him!! ;) )

I re-enabled my antibiotic regimen, knowing full well that I get sickER at hospitals.  Hey, it's what happens when you have no immune system and you're surrounded by sick people!!  I’ve been fighting this “no-such-thing-as-just-a-cold” for a couple of weeks and, knowing my luck, this would be the week for it to cut me off at my knees.  I have an appointment with my regular doctor today so that I can get on whatever other meds I need to be on to ward this off, prevent other ‘illnesses,’ and treat what’s already settled in my chest <hack hack cough cough wheeze>.  I have also placed a call in to my anesthesiologist for a refill on my Ketamine nasal spray.  It’s better to have it and not need it than to not have it and desperately need it!!  (Especially since there is only 1 pharmacy in a 25 mile radius that can mix my low dosage.)  I wanted to have my house cleaned before tomorrow but that is not a spoon I’m willing to take away from my family.  I will get it picked up a bit, but I choose to not manhandle the vacuum as well as not doing the repetitive motions of dusting furniture and wiping down the bathroom.  My iPhone, now that it’s dry (it went for a swim in the toilet over the weekend), is fully loaded with the music, apps, and videos that can help distract and entertain the Munchkins and myself.  I’ll stay at the Oasis since it’s closer to where the surgery will be, less travel time = less stress and discomfort.  My Go-Bag is refilled and packed and will stay in the car all week unless it is needed.  I even made sure that I had extra Benadryl in there for stress-induced hives … those date back to my pre-RSD years, but hives have become uber-brutal, pain-wise, in the post years!!

These are the types of things that I have become aware of over the years, in dealing with RSD, family, stress, ... and waiting.  I’m sure I’ll find something to kick myself over tomorrow when I end up missing it, but my dog and my pain (the 2 most important things) are already taken care of.

I have faith that this week go as smoothly as possible and that my family will do what we do best, form an unbreakable barrier of love and support.  I also have faith that my doctors will do whatever they can for me today, and that I will keep all of my pain manageable.  If I’m not able to blog tomorrow, please know that I will thinking of my RSD family as well and wishing you all minimal pain and maximal smiles!!

Jenn's Bag of Tricks - Grocery Shopping

Living alone with RSD is not easy.  In fact, it’s a depressing pain in the tookis!!  But it is possible!!  Once you have amassed a bag of tricks, there is almost nothing you can’t do in your own life!!  You just have to be willing to make the necessary changes, pick your battles (spoons), swallow a little bit of pride from time to time, and just *keep at it*.  Soon things will become like 2nd nature and you’ll be making your own life a little easier without even realizing it when you do it.  It just becomes "the way that things need to be in your world."  Here are a few of my grocery tricks to help get you started …

The mere thought of traversing the aisles of a grocery store, while in pain, can be paralyzing to me.  Add to it the inevitability that I will have to face the refrigerated sections, and I have a strong case of Supermarketphobia.  So I don’t go alone.  I call a family member or a good friend and ask someone if they would be willing to help me spend a couple spoons on an adventure on a specific date at a specific time, I’ll buy the coffee.  (RSDers, please be mindful of how you ask.  Remember, these people have lives of their own and the sun does not shine out of your tookis for the rest of the world to revolve around.  Set it up in advance.  The worst anyone can say to you is “no” and that’s ok, you can call someone else or wait a day.  You have bigger battles to fight.)  Since my SSD checks are WAY below pathetic, I have become a coupon clipper.   I make a detailed grocery list based on the valid coupons in my collection.  By detailed, I mean that I write down (or type out) the brand that I want as well as the specific flavors.  I also buy in bulk, when possible, and divvy up portions for future use and easier handling.  When I go to the store, regardless of time of year, I wear layers on my upper half as well as long pants and I wrap a jacket around my waist.  I always use a cart for balance (well that and those small baskets get too heavy after 2 items) and if it’s a “big trip” I’ll take my cane in too, even if it's for nothing more than reassurance that I have it if I need it.

Yogurt - I have a coupon for Yoplait.  I google “Yoplait yogurt flavors” and I write down 5 flavors that look good and that I know I’ll eat.  If it’s a good pain day, I’ll put my jacket on before heading down the yogurt aisle, if it’s a bad pain day, I’ll give my list to whomever is with me and then they know the exact brand and flavors to look for without having to shout out my options to me.  Also by making a detailed list, in case it’s a really bad pain day and someone has to do my shopping for me (I reserve that particular job for my mom or dad), they have my particulars in front of their faces and I’m not subjected to what they think will sound good to me.

Milk - I buy vitamin A&D milk because I need every vitamin and protein I can ingest.  Those gallon jugs weigh a ton (well …  a gallon might as well equal a ton if you’re an RSDer) so I ask whomever is with me to “please lug the jug” for me.  When we get back to the Chalet, I ask that same person to pour the milk into my designated, more manageable to me, sealable containers (with handles).  That way I get my milk, vitamins, and moustache without being afraid of manhandling the big plastic jug that weighs more than I do … at least until the darn thing is less than half empty.

Ground Beef - I buy a minimum of 2 lbs at a time, depending on price.  When I get home, I put the whole thing in the freezer and wait for a good pain day to grace me with it’s presence.  On that good pain day, I thaw/defrost the package/log, put a white onion through the food processor, and brown it all.  After it cools, I take sandwich size freezer bags and put a couple cups of meat in each baggie and stick them back in the freezer.  I can reheat 1 baggie at a time for tacos, spaghetti, goulash, pizza, or whatever I’m hungry for that particular night.

It’s the simple little things that I can do to make my life a little easier and more manageable and they still allow me to feel a sense of independence and accomplishment.

I have faith that, even though I am no longer “alone,” I will still be able to use my creative bag of tricks in enough little ways to make the scariest tasks feel like a successful adventure.  I have faith that the single and alone RSDers that read this will take 1 or 2 of my tricks to heart and say, “Oh yeah, huh??  I can do that too!!”  When we stop believing in ourselves, RSD wins … And I’ll be a monkey’s uncle before I let that happen to me!!

Dissension In The Ranks

I belong to over 15 adult, RSD related groups on Facebook and never have I ever seen so much catty behavior in all my life!!  Seriously people??  C’mon now!!  We’re supposed to be “helping” each other, providing “support” for each other, “listening” to each other, and for God sakes, not cutting each other down!!  We need to bond “together” to promote awareness, possible treatments, and positive attitudes.  To the, yes I’ll say it, WOMEN who have turned on each other, belittled each other, verbally abused each other, attacked each other, and spread lies and rumors about each other, I have this to say to you … HIGH SCHOOL IS OVER!!  WE are fighting for our lives here!!  How dare you climb to the top of your high horse and be the cause for additional stress and pain to another sufferer!!  Yes, I am pissed!!  This falls under my heading of “Bullying” and I have zero tolerance for it!!

Facebook has become a Godsend for us RSDers.  We have found that we are not alone in our fight against the pain.  I have over 150 “friends” that I have never met, but we have a formed a bond through RSD, and quite a few of us have become very good “friends.”  And the one thing I have learned, more than anything else, from these people is that even a cripple with an open mind and a big heart can move mountains.   For instance, I have never been face to face with the Warrior Mama or the Penguin, who live in Florida, but, thanks to FB, they started Crazy Sock Day, sucked me in to the event, and then they let me run with it this last year.  We have raised awareness together and brought comfort and hope to each other.  And then there’s Raspberry Shortcake, who lives in PA.  Never have we seen the whites of each other’s eyes, but because we feel like the pioneers of the new onslaught of sufferers (we‘ve both had it since ‘91), and have tried similar treatments, and found solace in the same things, we have become confidants and true friends to each other.  I reconnected with my Godfamily through Facebook and RSD (dammit), I met others in my area with RSD and have been able to meet them face to face.  I need these groups!!  To keep me focused on the fight, to be my sounding board, to get me out of my own head and help someone else who is struggling, I need them!!

Most of us are confined, in one way or another, to our homes.  Because it hurts too much for us venture out in public when it’s cold, or windy, or snowy, or rainy.  Because we can’t always wear enough clothes to cover our private parts since our sensitivity to touch, of any kind, is amplified to an excruciating level.  Or because we’re afraid of slipping on the ice,  Or because we’re too hopped up on our meds to drive.  Or because … ah hell, all of the possible reasons are too numerous to name.  Our social lives are right here, on the computer.  Yes, some of us have been able to re-forge a trail towards independence, but not all of us.  I can still get out from time to time … and it’s been more and more, lately, since I have constant support from My Team and my family.  It’s been fantastic!!  I get to see real faces instead of profile pictures!!  I get to hear voices (not just the imaginary kind) without having to hold my phone up to my ear for hours on end.  I am getting more comfortable allowing certain others to see me in pain so that they have a better understanding of what “good pain days” and “bad pain days” look like.

But I need my network!!  The drama and BS that has transpired over this last week has caused people that I have come to care about to leave these groups.  And yet the instigators remain, perched upon their roosts, waiting to descend upon the next unsuspecting victim who is seeking help and advocacy.  I am here to tell you that even the vultures can be shot down if you have the right gun (ally, advocate, attitude) in your holster.  

I have faith that I can be that gun, if I am sought.  I have faith that the cattiness will subside for a while, and rationality will resume it’s roll as our overseer!!  And I also have faith that as soon as I take a lavender Epsom salt bath, drink a cup of chamomile tea in between pots of coffee, and do some bio-feedback breathing that this last round of “She Said, She Said” will be a distant memory.  Onward and upward people!!  We have awareness to raise!! 

Doing The Next Right Thing

I am a tall, skinny, tomboy girl-jock.  I have always been a tall, skinny, tomboy girl-jock.  I got my 1st non-surgical scar at 5 … and it’s still visible on my right knee.  In all of my elementary school class pictures, I was always in the back row, always the tallest girl, and a couple of times I was even the tallest classmate … period.  I started taking gymnastics classes in Kindergarten in SW Kansas.  I began my stint as a basketball player in 3rd grade in Colorado Springs.  4th grade in Longmont brought me to the YMCA soccer program.  By the time I reached 5th grade, my gymnastics instructors at the Longmont Athletic Club informed me that, at 5’2”, I was too tall to compete in my age group.  In 6th grade basketball, I made my 1st half-court shot at the buzzer.  In the fall of 7th grade I found my soul on the volleyball court and by spring I was striding and gliding over hurdles with the “big girls” at track practice.  For the rest of my junior high and high school years, I was the starting Middle Hitter and occasionally Back Row Setter on the volleyball court and starting Center on the basketball court.  My bony hips, knees and elbows became my weapons of mass destruction.  I broke opponents’ ribs and noses, dislocated knees, caused sprained ankles, and was the distributor of countless, dark, painful bruises.  A few weeks before I was to leave for college, I was playing in a pick-up game of basketball at the athletic club (yep, same one that kicked me out of gymnastics) where I lost a rebound and scored a sprained knee (FYI - these are still my pre-RSD years).  My freshman year of college started without me in a uniform.  Desperation set in as my knee healed and I needed to be back on the court.  So I added tallest member of the Drill Team to my “Tallest Of” résumé.

In 7th grade, at the age of 13, I began my rebellious teen phase … I started smoking cigarettes back behind the Track Shed at LJHS.  I have now been smoking for 30 years.  Are you fucking kidding me??  (not gonna apologize for this one, because IF my mom cussed, that’s exactly what she’d say, and she knows it!)  I have quit booze, pills, cocaine, acid, and caffeine (for a brief period of time, post gall bladder surgery.  I resumed my coffee intake as quickly as my body allowed … 2 years later.)  I beat my RSD every single day just by getting out of bed.  But I have not been able to successfully quit the cancer sticks.  My best run was last year.  3 weeks the e-cig, and Nicorette gum.  When the stress moved back into my life, so did the tar and additives.  Having recently discovered that heart disease has reached out and smacked my fam upside the head, I am more determined than ever to break this damn habit.  This time I will not do it for my folks, my siblings, my Munchkins, or my l’il fam ... I will do it for myself.

When I was younger, having lost a brother when her was 9 months old, I began living by the mantra, “If only the good die young, I must be immortal.”  Every time I stare into the mirror now, I stand nose to nose with my mortality.  I finally love my life, RSD and all, and I want as many years on this planet as I can get.  Yes, I have days where I would rather be anyone but myself because of the pain, but I always come back to my tall, skinny, tomboy, girl-jock mentality.  That frame of mind that says, “take a deep breath, shake it off, get back out there and show those people what you can do.”

Yesterday, I ordered the replacement parts that I needed for my e-cig apparatus.  My next SSD check comes next week and I will be reinvesting in Nicorette gum (citrus flavor).  By the end of next week, I will be a non-smoker.  Last week I began a private Facebook group for RSDers Breaking the Habit.  Since stress affects us RSDers differently, I needed a support system that really understands and won’t just spew rhetoric.  We already have six members!!

I have faith that I will break the habit of nicotine.  I have faith that this is the next right thing for me.  I have faith that the people closest to me, and my cronies in RBH, will hold me accountable to myself.  I have a lot of life left to live, and dammit, I want to LIVE!!!

                                                          ♡..♡  _________________________ ♡..♡

OOHH!!  Quick update about Kiva, he said "Yes!!!!" 

He Said "YES"!!!

New Holiday … Kivalentine’s Day

“Happy Valentine’s Day, Kiva!” …
“Happy Valentine’s Day, Mommie!” …

Ms. Gump may have said, “Life is like a box of chocolates.  You never know what you’re gonna get,” but my Mommie always adds to it and says, “…unless you are smart enough to look at the map on the inside of the lid.”  My Mommie is a dork, but she’s a smart dork.  As for the box of chocolates, she won’t be getting any.  Mommie can’t eat chocolate anymore and wants to have a memorial service for her chocoholism.  For about a year she has been testing this horrific “allergy” and it doesn’t matter anymore, chocolate causes her to flare.  She gets these intense, cold, prickly feelings on her neck, the back of her right arm, the palm of her right hand, and down the back of her right leg.  Maybe if she would chew it on the left side of her mouth, there wouldn’t be a problem, right?  Wrong.  It just doesn’t matter anymore.  I have seen her eat it, but she won’t eat much at a time.  She says that the taste is worth the pain … occasionally … but I wouldn’t know about that.

Four years ago, Mommie told me that Valentine’s Day was just another day on the calendar, but she‘d always make sure that I was her Valentine.  Three years ago, she told me that the day was an evil plot against single people and that some little blind baby-guy named Cupid was Satan’s Spawn, but I was still her Valentine.  Two years ago I didn’t get to spend Valentine’s Day with my Mommie because the Munchkins were getting baptized in Kansas and my Mommie would become a Godmother for the 2nd time in her life.  (She’s also one of Unca Houdini’s Godmothers.  I guess that’s what happens when you’re 14 years older than your brother.)  But before she left, she promised me that I was still her Valentine.  Last year I got to spend part of the day with her, but then she had to go to Wally’s World for 5 hours for her Cat-o’-mine nerve blocks.  She started the day sofa surfing and in a ton of pain and turning funny shades of grey (I’m a color blind dog, remember?) and she ended the day sofa surfing and burping into the dark bags that they give her when she leaves Day Surgery.  Again, she called me her Valentine.  This year I have my Mommie all day, she's not snarky, she's not sofa surfing, and she's not burping.  So I am taking it upon myself to make this my best Valentine’s Day ever … Mommie’s Pain Be Damned, this will now be known as Kivalentine's Day!!

The original idea came to me about 10 days ago <stretch> but I had no idea how to put it into action until this morning.  Mommie had another <yawn> insomnia night last night.  You would think that after living with her for over 4 years, I would be used to them.  And I was.  I really was!  I used to be ok with her bad nights <stretch>  because I would curl up just about anywhere in the Chalet and still be able to <yawn> keep an eye on her.  Last night was the <double yawn> 2nd night in the last week when my perch did not have a broad enough scope.  I was tucked in and snuggled up next to Mommie on her sofa surf board and watching a movie but <stretch> every 30 minutes, or so, I had to get up and make sure our Team was still sleeping in Bodieland.  I have now <yawn> named this act “making the rounds.”  I think it was almost 4 a.m. before she was able to breathe deeply enough to force a couple hours of sleep.  We crawled back into Bodieland and I made Mommie the meat of the sandwich.  When we all got up, Mommie went to visit Bertha and our Team and I curled up together in the big, brown, comfy chair where he invented the Kiva Song … This was when my bright idea hit me between the ears like a ton of rawhide bones.  

Family is everything!  Mommie says it all of the time and I know that she and I are our own little family, but I have never had a “Daddy.”  Mommie has one and she loves him very, very much.  She gives him hugs and kisses, they watch tv together, they walk around together, they go places in the car together, they talk, he comforts her when she’s scared, they eat together and he laughs at her … a lot!  And I got to thinking, these are all of the things that our Team and I do too.  So as soon as he left the Chalet this morning, I kicked Mommie out of her chair so that I could write the blog today … and … I think I have the courage to ask him now …

Dear Our Team,
Will you be my Valentine … and my Daddy?
Love, Kiva

I have faith that he will read this and think that my Mommie is the Ultimate Dork.  I also have faith in my adorable face and it’s ability to nullify the word “No.”  I deserve a Daddy … and Mommie always says that I deserve only the best of everything … and he’s the best!!

“Happy Valentine’s Day, Everyone!”