Friday, May 31, 2013

Dysautonomic Relief

I access my own port (putting the needle into my chest) and administer my own IV meds (which are way better and faster acting than oral meds, which is why drug addicts are willing to poke needles into their arms and other body parts).  I've got the IV pole and everything else that comes with the privilege of performing your own infusions (I even take it with me in the car if I need to leave the house). 

Did I mention that my walker (with a seat) is my best and constant companion?

For Those Who Have Emailed Me

First:  Thank You!  Since removing the comments option from the blog (which I decided lacked intimacy and mutual privacy); I have received lots of personal emails (you too can email me at  My readers are openly writing me about their lives and struggles.  I never imagined that anyone would actually take me on my word and contact me by email.

Now to the point of this post.  My goal is always to answer each email.  The problem with this lofty goal is that it does not take into account that I am a chronically ill single mom who's homeschooling her child (can you say "stressed?").  I am barely able to fill the job requirements of motherhood, being chronically/progrssively ill and homeschooling teacher.  And lots of days (every week!) I can only fill one: being ill.

Though I am eager to answer all of you, it may take some time.  But do know that eventually I do respond to all emails.

Thank you for sharing your life and stories with me.
I am holding a stressed-out stress ball.

Dysautonomic Behavior

It's how I roll.  And I work overtime.  No vacation days.  No holidays off.  I'm on the dysfunctional Dysautonomic grind.  All day.  Ev'ry day.  Catch up!

Thursday, May 23, 2013

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.

Wednesday, May 22, 2013

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?

Tuesday, May 21, 2013

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). 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.


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

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

Monday, May 20, 2013

Freestyle Ramblings: I Could Almost Cry

Finding my way out of a hole.  Crazy rabbit hole.  A rabbit hole that seems to be turning into a circular mess.  Sometimes you have to let life be a mess.  No....didn't like the sound of that, or the false-hood of it.  Life is a chaotic mess.  Our world is.  Space is.  Organized chaos?  Coming together for a mashup of some amazing moments.  Mashup.  Circular mashup.  Love it.  Then hate it.  Be afraid of it.  Or go with it.  Really one has to go with it.  The only other combination would be going with it while utterly afraid of it.  Laws prevent too many other options.  Chaotic Laws.  My being as a lawful body.  Humans as a lawless set.  Mother Earth as an enabler.

April 2012

Saturday, May 11, 2013

Coffee and Outlook: Boycott, Divestment and Sanctions (BDS)

From where I'm sitting, today is proving to be just as impressive as all others.  We humans never miss a beat when it comes to slow shock value.

Let's look at it:  Noam Chomsky asked Professor Stephen Hawking to boycott an academic Israeli conference--and Stephen was down for the cause.  

We can rightly assume that this intention will grow massively as very little time passes.  This particular issue (Israeli powers) had been thawing from the freezer that American had placed it in.  Noam's push was a move for somebody (hell! ANYBODY) to finally tackle what is eating away at many souls:  The war on "ordinary" Palestinian people.  

Ordinary.  The working class.  Folks who just want to get on with the tasks that nature deems important: eating, sleeping, pooping, peeing, and procreating.  Mothers and grandmothers who have no idea who Chomsky is want to continue to do the job that is innate.  Men?  Well...that's too long of a story.  A story that time is addressing, a story that is bound to write itself when we women take the time from eating/sleeping/pooping/peeing/procreating-raising-children.

Where are we?  We are at the part where President Obama has to slowly tweak his speeches on how he feels about Israel and American Jews--he needs them more than he needs American Negroes.  With that being what it is, common sense Americans are finally realizing that Chomsky's microwaving of the formerly thawing issue is what it is going to take to accomplish what the BDS and so many others want:  the freeing of the ordinary Palestinian people.  

I guarantee that we are about to see some historical changes unfold.  Hell, the fact that I am even taking time to blog about it speaks loud and clear.


Thursday, May 09, 2013


"More and more all nations are realizing just how much we are being pimped by our systems and big money.  World War III is beginning while we are consumed by achieving ideals and goals that are anti-family and anti-sustainability.  What I do see is that Mother Earth cares less about our agendas, just ask the dinosaurs.  Oh!  My bad, she wiped them clean from her body.  Who's next?"