ohhhhh.

hey, i already wrote a journal today but increased energy brings increased brain activity up in here!  you don't have to read this .....at all or hang in there......i just needed to have some talk time one way or another.  and this space lets me do that........hugs, hugs, hugs and more hugs!

so hello again,

had to sit down.  this was the closest baseball mitt for this worn out ball.  sheez.

been sittin' here long enough to grow old...er.  older.  if not for growing i'd be deep under red georgia dirt.  or scattered somewhere's warm i hope.  i'd prefer to blow in a sweet spring wind. 

i'm trying in my own kooky way to greeet the future.  there are so many moments when i think stuff like what is the point?  which is selfish and not good form on my part.  but it's in there......those general thoughts.  when i was really sick and still working i used to think i was nothing more than a desperately tired body in a car going from there to here counting lines on the highway.  trying to push ahead......the old boot straps method.

those first two years at home were so hard. without faith, without God i believe i would have closed the store.  but then thoughts of a fiery hell flash before me and i think nah.......i got burned when i was a little bit.  my brothers were jumping over an autumn fire in the garden.  i wanted to do everything they did.  i jumped and missed the finish line.  didn't make it.....burned my ankle and my red slippers.  they were red vinyl and soft inside.  i cried like a baby, hurting and yet embarrassed at my failure at the grand old age of 4.

the point?  burning hurts.  not something to plan for the hereafter based on my brief stint w/that burn and the occasional cooking burn.  no i'm not feeling depressed or morose, i'm just talkative inside my head.  i've been cooped up with me for almost two weeks non stop and its not so good for life balance. 

but i want to tell you at this juncture of my 20th year of illness......there are seasons that are better than others.  days/moments, weeks......they do come again.  the winds of illness also sweep through and catch you unawares at times.  no matter how long i've been sick it still feels like the new flare, this crash can't possibly be just the illnesses already known to me/my doctors.  these times of suffering seem like an unbeatable foe.  it took me a long time to learn that getting still and quiet are huge allies.  still and quiet are friends of great importance.  lean into them, let them help you.......to do less.  to stop pushing so hard.

i know, i know, when you are that sick it seems impossible TO DO MORE......everything is a push.  but i've seen changes in my life.  i used to fall alot, for a very long time.  i haven't fallen now in more than a year.  whatever triggers those falls has backed off.  it used to be a daily challenge....but over time with increased still quiet resting i am steadier.  not to say that the wobblies don't still come, but i've learned to use aids.....a cane.  ( i think of it as my puppy....i take it for walks).  I use bars in the bathroom.....but need less of those regularly.  I've used steps in the bathroom.  I have a traditional bathtub and can't change that......getting over that high edge was hard for me to manage and remain upright....so I added slip proof steps.  Currently they are in the garage, ready if needed, but i haven't needed them in over a year either.  the first two years i used a walker a great deal......it's got lots of lovely cobwebs on it now.....and holds a basket of widgets in the garage.  i don't miss it, but yes, i find comfort knowing it's there as needed.

i used to be so afraid of using aids.....of making changes, of getting a handicapped parking pass......of using electric carts in big stores.  an internal mission of pride and why did i do that?  i have heard from many others that they don't welcome these needs either....as though to use them means giving up.  some sort of external declaration of failure.  but since i've come to my senses and discarded the bulk of that vanity and insanity i've gained a lot more freedom....been blessed with many more life rewards.  extended the length of that invisible umbilical cord, the one i think of as foot sanity.......the more changes i incorporated into regular day time living the better i slowly gradually got.  not huge to other people probably......but think how much it means to someone who is paralyzed and can now move a toe.....a finger.....a hand.  these are huge advances.....and a sign of hope that means more independence for us all. 

it took several years for me to be able to cook for myself regulary.  i used to survive on canned crap, packaged junk.....a lot of salt and preservatives that served to pour more fuel on the fire.  it took me a long time to be able to cook for an hour or two on a sunday in order to provide meals for myself for days at a time.  and over time i've been able to cook much more regularly.  less drive through food, less packaged, canned and/or preserved foods mean less pain in the body.  i wish i had a bigger food budget so i could afford even more fresh and better in the food aisles.....but the progress made has been a big blessing....less pain (sometimes, and the sometimes have been more frequent.  it doesn't mean that fibro doesn't hit with a vengeance, that i've got any thing all figured out....but the progress is definite.  it's really something to look back at where i was in 2010 to now.....to see the differences.

did you know that one of my old bedding habits was to sleep on the left side of the bed for two weeks, then the right side for two weeks, and then sometimes on top of the covers with throw blankets for another two weeks as needed to avoid having to unmake the bed, wash the linens and then eventually remake the bed?  i know we all have our tricks to cope and get on with things....so many days on end when the stuff was waiting so long i felt obligated to rewash it all.  start over. 

today i got to tidy up.  vacuum the bedroom. toss the bathroom rugs in the dryer to fluff 'em up.....pretty up the bed linens.  i got to empty the dishwasher, put new dirty dishes in it.......i got to bend down to clean up two stains. the living room area rug and the carpet by my feet when i get in and out of the bed.  ok, yeah i'll be paying for it all later......but today i got to do these things.  they are not losses the way they used to be, now they are plusses.  priveleges....things i can do.....for so long it all felt like a giant CAN'T.

somewhere in my life someone told me that when CAN'T gets you down step up to the plate, swing that T off the back end and let it fly high into the sky.  turn can't into CAN.  so much of what we need to get on with life is mental.......finding ways to maintain our mental, physical and emotional balance day to day......and yes spiritual balance too.  back in 2010 i couldn't find my smile.....i remember telling myself i needed to incorporate comedy, jokes, stories reflecting hope, happy, goodness.....i would try to spend as much time going positive as i spent being negative, in tears, being in the fetal position.  sometimes i worried that one day i wouldn't be able to unfold.....so caught up in a web of pain and fatigue. 

i remember one day at a conference in Washington, D.C.  after a long hard day of working at the seminar registration area early early in the am, then working as booth manager all day, shaking hands and talking all day standing........a hurried stand up snack late in the afternoon if i ate at all........then changing clothes, rushing to set up the silent auction (which i organized, another something i had never done before....) ....we had dozens of donations, and i felt a quiet internal pride at having gotten so many nice things to raise funds for student scholarships.  one member donated a week long stay at a Florida Coast Condo.....another member donated a week long stay at his city center apartment in Brussels.......there was a collection of original prints from the Munich Germany Olympics....one member handcarved a man in a canoe (which sits proudly in my curio cabinet...a great professor from the Virginia Tech.....another member from Kentucky brought high dollar Kentucky Bourbon and also snuck me some white lightin' to try out.  he brought it on the plane in an old fashioned mason jar.  not sure that was kosher, but it was long before terrorists were such a real and present danger.......

there were hotel stays at a variety of cities....from our very own Atlanta, to Los Angeles, to Chicago to Boston to NYC.  jewelry from Hungary.....one member donated a ride to and from the winner's hotel to the airport....in his beautifully restored zillion year old Rolls.  two of my pals and I won that as well.......you should have seen people stop and stare, everyone was taking pictures.....for a moment i felt like a glamorous movie star.......and this very important engineer (did contracts for the EPA, the DOD, the DOC and on and on and on......was our chauffeur.  He and his wife were very instrumental in helping to create affordable electricity for many third world and or war torn nations.......and in their spare time they managed to adopt and raise six children.  talk about inspiring......i remember all the guys at the airport really going gaga over that car!  being in that car was a real showstopper!  my friends and i felt like teen agers ....giggling in the back like princesses....starlets.......feeling so pampered and adored and goofy too.

i have the photos somewhere......in that vast canyon of lost socks, lost memories and all the stuff  i don't even know is lost. 

......i have to stop now and figure some things outs, bills/accident paperwork.........cause i'm already getting stiff and struggling.  i needed some think time...creative time but i am behind and need to be responsible to life commitments.  why am i not a real princess?  where minions handle these sorts of things?  i would pay my minions well if i were a princess.......does any one remember the show Queen for a Day besides me?  I used to remember the way they would crown an average every day housewife and i would dream that they would pick my Mommy for that honor.  wrap her up in that regal robe, the crown, scepter and gift her with lots of both practical and luxury items.......from jewelry to large appliances. 

i think my memory taps are wide open........but i really have to be good and make some phone calls.  not looking forward to it at all hence the long stall here.  love ya......