Steemit

I am very busy with curating my Steemit account.  I post there a few times each day.  Out of all my techno gigs, it has suited me better than any other.  I'm trying to cross-advertise all of my posts, and Steemit is the first site where I have more money to gain--and this time, money is what I am after.  

I have been creating online content since 1997, but I have not seen much action on the rewards side.  As I look back, I have contributed so much, expected so little.  Now that Sir is turning 13 next month, I am able to dedicate more time to a new online venture, with Steemit being chosen one.

I'll be mapping out a plan today, and am trying to pull this blog (the one you're reading now) into the scheme.  We'll see what happens.

And for those visiting this blog from out the USA:  "Welcome to my house."

Most of you non-USA viewers come to my page by way of researching a topic that I've covered; which means that my research has been of some benefit to another; which is what matters most to me; which is probably the reason why I have not gained that much financially--doing a lot of work researching and not charging anyone for my efforts.  

I'm a researcher from way back.  Most of my research came by going to the library, using the card catalog, and checking-out books with my library card.  I have an English degree and spent my college and masters' studies in libraries, devouring books.  And it's only because of my health that Sir and I no longer go to the library every week.  Physical libraries have books that you can't find online, there are far better gems at your neighborhood library.

That's it for now.

~MissNikkiAnn,

*Click this link to find me on Steemit.

Chronically Aggressive

I have been living with my illnesses' most persistent and debilitating symptoms since 2009.  You would think that living with something 365 days a year would become routine and controllable.  But I assure you that it is not the case; especially when your illness is aggressive and progressive with no remission to come.  At some point each week I think that I am as sick as I can possibly get, then I get even sicker.

What is most annoying is that my symptoms guide what I will be able to accomplish in any given day.  It is near impossible to "make plans."  One week I am in the pattern of being my sickest during the morning hours; the next week it is during the night hours; the worst is when I get no relief at all in a week--and I am having that right now.  It makes me feel so insignificant when I can't do for my own son, when those who are caring for me have to make significant adjustments to their lives for the sake of my health.

This situation gets old but the illness never grows weary, it shows up right on time and loves to put in overtime hours.  Nothing I am taking is alleviating the pain and pre-syncope symptoms.  I've had my 3 intravenous infusions for the week and still my body is not able to moderate my blood pressure, it totally bottoms out when I go to stand, which means I am bedridden until it decides on what it wants to do next.  Me?  I wait.  And wait some more.  And it gets old.  And I am getting older.  And my son is getting older and responsible enough to do for himself when I cannot perform simple mom tasks.  And it gets old.  I wait.  And wait some more.

Ranted Ramblings on Disco Piss

The hamster is hiding in one of her loops.  I haven't known her long, but so far she seems to go there when Sir and I have frustrated the shit out of her.  I mean, I have good reason.  If she'd just stop shitting and pissing in her wheel then I could spend less money and time poking at her and trying to potty train a thing that  likes to piss, shit and run as a bathroom break.

And then my POTS (Postural Orthostatic Tachycardia Syndrome) symptoms have arrived right on schedule to remind me why I hate spring and friggin' summer, I am bedridden and my world is like an spinning disco ball with hints of some hallucinogenic hippie drug that makes spinning in circles after a long day AND night of drinking look like its bitch--I am up at 2:30 in the morning feeling hungover without the prerequisite of partying and drinking.

Did I mention that racism is rampant?

A Story: Epipen and Nasty Nan

found myself alone with an amazing from scratch spaghetti with meat sauce by one of my favorite family-owned restaurants.  this is new england, so great italian food is not hard to come by (and i ain't talking processed olive garden shit).  this was my second day with the same dish.  the day before the outside and inside of my mouth began to set on fire from the onions.  but i wanted it so bad that i kept going.

i am highly allergic to onions, scallions and garlic.  highly.

i am also prone to being an idiot.

but how can one live in a highly italian populated area and not eat onions and garlic?  it is near impossible.

a little over a year ago i had to epipen myself after coming into contact with onions.  let me be clear: i did not even consume the onions, mom was cooking with them on the OTHER SIDE of the house.  my throat began to close up...what a horror

now here we are.  a little over a year later.  i HAD been diligent about even being near onions/scallions/garlic.

this time, not only did my mouth and esophagus get set on fire but my entire body felt as if it were being cremated.

then my throat began to close up.

i panicked.

grabbed 2 benadryls.

and refused to epipen (i have heart issues and the epipen's epinephrine causes my heart too many issues).

but...it kept closing.

i panicked even more.

tried to find the epipen in my purse.  couldn't.

dialed my mom while the 8-year-old watched me in horror as i flung all the shit from my purse onto the floor.

found it.

stabbed myself with it.

cried like an idiot who had forgotten that she'd CHOSEN to put her body at risk.

popped another benadryl and then some clonazepam, propanolol and emergency inhaler.  yelled at the 8-year-old to rub liquid benadryl on my raw back.

waited and sat in front of a fan to cool my burning body down.

time passed.

i survived...

and noted that Nasty Nancy (nickname i gave to our new pet dwarf hamster whose real name is Ala Luv Cake) slept through the entire episode--my screaming, crying and everything.

then the 8-year-old gave me a lecture.

then mom gave me a lecture.

i did not give myself a lecture.

later that night, i gave Nasty Nan (short for her Nasty Nancy nickname (yes, i am an idiot)) a lecture about not having my back and sleeping through my hellish episode.

Nasty Nan looked at me.  sniffed the finger that i was pointing at her cage.  and did what Nasty Nan does: got in her wheel (which she truly thinks is her bathroom) and shat and pissed in it while running to nowhere.

enough.

wait...did i mention that i think Katt Williams is a genius?

i know some of you will have to google that name.

Nostalgia: LET'S GO! Jamming to "A Tribe called quest - 'Scenario'"

This is one of Sir's (my 7-year-old) favorite songs.  Today I read the lyrics to him, explaining the history of the "retro" lyrics.  His favorite lyrics are from Busta Rhymes, which is no surprise since most hip hop lovers favored those infamous words that placed Busta in a position to bring pain to the world of hip hop.  Awesome stuff!

~MissNikkiAnn, "let the rhythm hit you"

A Tribe Called Quest – Scenario Lyrics

*Clicking the above link will take you to another site that I have visited personally and did not suffer and consequences (viruses), but you must always use your own judgement about leaving my "safe" page to view any of the links that I have posted.

~MissNikkiAnn

Sir: Explained

Published with Blogger-droid v2.0.4

Sir's Pick: Kirby

Had to remove Kirby, he was way too noisy for my taste. Sir is upset--really upset about it. But...he'll get over it. I think. *shrugs*

Keeping You Up To Speed…

I have a lot going on at once.  Since I am finally at the end of a month-long Dysautonomia flare, I am trying to play catch-up.  In addition to playing catch-up, with the help of my psychiatrist, whom I adore as a human being, I am trying to implement some activities that will help me work towards my goal of creating cash flow on my own.  I have not yet been approved for SSI or Disability, so my income is ineffectively $0.00 per hour, which stings.  And sucks. 

As I am learning to live and work around my disability, we (my psychiatrist and I) are trying to figure out how I can utilize my talents from my bed, in the lying flat position, in order to make a livable living with or without the aid of SSI/Disability.  As I’ve told her, eventually (if I am awarded money from SSI/Disability) I want to be financially independent of those systems sooner than later.  Just as a blind person, or deaf or mentally handicapped person can generate income despite their disabilities, I too feel compelled to do the same.  So our brainstorming has led to my attempting writing by voice recognition applications that I use while I’m too sick to be upright.  It’s a bit daunting, but remember how daunting text messaging used to be before QWERTY pads?  Same thing.

This morning I got an email letting me know that I’ve been accepted as the group leader of MDJunction’s Non-Familial Dysautonomia Forum.  I feel honored and excited about the endeavor, and am looking forward to advocating for Non-Familial Dysautonomia and chronic illness sufferers in general.  I’ve also been using my YouTube vlog as an advocacy tool by making my own videos and connecting with other Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia that I have) patients.

And there’s so much more, but right now I am in so much pain and need to go handle that and Sir at the same time.  One thing I will say about Sir is that I am so proud of him.  He is crazy as hell, but he’s doing such a great job in kindergarten, and I am thoroughly enjoying watching and listening to him read; which I think has been my favorite part of his kindergarten experience.  Yay for reading!  I heart books.

Be well.

*Photo--Sir’s first day of kindergarten, Fall 2010

MissNikkiAnn

Christmas 2010

So all is well.  Sir was blessed with so many material things this Christmas season.  But more than anything, he showed me time and time again how awesome and natural it is for children to surrender to their Spirit.  Homeboy can recite The Lord's Prayer better than some adults.  And not only can he recite prayer, but he can give awesome prayer straight from his own heart and soul.  And that's MORE than a mother could ask for this Christmas season.  So I am blessed.  Cause to me, Christmas is about children, youth and birthing.  It's a season where we all (even non-Christians) recall and live within the story of the baby Jesus being born.  And of physically reenacting how he received gifts from men.  I am filled.  And I am filled that you were able to come to this page today and witness how awesome God has been to me and mine.  Amen.

Below is a link to one of my favorite books by one of my favorite authors, Marianne Williamson.  Many of you may recall how I once did my own voice-over/audio recordings of some of her work.