Wednesday, November 27, 2013
Saturday, November 16, 2013
Friday, November 15, 2013
Wednesday, October 30, 2013
Thursday, September 26, 2013
Sunday, September 22, 2013
Sunday, September 01, 2013
Saturday, August 31, 2013
the demands are high
the actual accomplishments, typical
and on a typical day, i won't even put into action 1% of my brainstorms/brain farts
i will probably only attend to my basic needs: eat, drink, pee, poop, sleep
there will be moments in the day where i will believe that
are not big enough accomplishments for my theoretical superhuman abilities
but my accomplishing those not big enough things makes me a winner at being human
at odd times, i am a recipient of life's and mother nature's serendipitous--seemingly magical and miraculous--moments, most of which won't even register with my tiny brain cells because i will be appropriately and understandably occupied with
but that one serendipitous moment (or, finally, one brainstorm) that is made manifest will make me feel as if i, indeed, had been living as a superhuman all along
and that glimpse of magic will almost instantly, and surely innately, be pushed aside by my dire need to take a poop, a pee and a nap--waking later to feel hungry and thirsty
and then eventually (and again), hungering and thirsting for my once momentarily vivid superhuman abilities
"Be good. Be patient. Be around-the-clock tending to your body's needs."
Friday, August 30, 2013
Friday, August 30th
Tuesday, August 27, 2013
Saturday, August 17, 2013
The Saudi statement:
"We have followed with deep sorrow the events taking place in our second homeland, the brotherly Arab Republic of Egypt; events which only please enemies of Egypt's stability and security and its people, but at the same time pain all those who love Egypt and care for its stability and unity which are, today, targets for all evil wishers.
This attempt to unsettle Egypt’s unity and stability - carried out by the ignorant, the inadvertent, or the mindful of the enemies’ design - will, God willing, be fruitless.
The people of Egypt, Arab and Muslim nations, the honorable Ulema, intellectuals, writers, and all sensible people [are] to stand united with one heart in facing attempts to destabilize a country which historically has always been at the forefront of Arab and Muslim nations; honorable people should not maintain silence on and be heedless of what is going on.
The people and government of the Kingdom of Saudi Arabia stood and still stand today with our brothers in Egypt against terrorism, extremism and sedition, and against whoever is trying to interfere in Egypt's internal affairs and in its determination, power and legitimate right to deter every spoiler or whoever misleads the people of Egypt.
Let it be known to those who interfered in Egypt’s internal affairs that they themselves are fanning the fire of sedition and are promoting the terrorism which they call for fighting.
I hope they will come to their senses before it is too late; for the Egypt of Islam, Arabism, and honorable history will not be altered by what some may say or what positions others may take.
Egypt will be able, with the grace and might of God, to pass into the land of safety; and then those will realize the wrong they committed when it is too late to show regret."
Wednesday, August 14, 2013
Monday, August 12, 2013
Thursday, July 25, 2013
Thursday, July 18, 2013
And the clock. The clock keeps ticking. And the time and date are everywhere. No matter the time of year, I always view the calendar days, weeks and months as "flying by."
But it is bedtime now--way past my bedtime. I have done all that I will do for now. After some sleep, maybe I can convince myself (and encourage those who are low in spirit) that life is going to work itself out. That no matter how weighted I feel with the days events, I will probably live to see another average human day--eventful or not.
And I hope for boredom. Some simple boring summer days where I can finally say that old saying:
Wednesday, July 17, 2013
Tuesday, July 16, 2013
And then I found this...
50, you have twice done to me what only one other man has...
If I were a smoker, I'd light up right fucking now.
Monday, July 15, 2013
Sunday, July 14, 2013
Friday, July 12, 2013
What does this have to do with Mos Def and the Guantanamo Bay video? The procedure in and of itself is not painful. On the other hand, if you are an inmate who's been refusing oral eating, and you're chained to a chair--possibly thrashing about--this procedure/torture could be the hell you never dreamed of.
Now, what is MissNikkiAnn's overall objective (since it's no disrespect to the art that went into that compelling video), I want my curious readers to know that J-tubes are a regular thing for us Dysautonomics--just like accessing our own ports and administering our own infusions at home. So take that information and imagine all of the other things that you don't about our lives with Dysautonomia. If you see me in a store with my walker, that in no way means that I am okay. The things that I have to do at home and at hospitals and doctor appointments will go unseen. The best thing to do is to assume that you can never grasp it until you (or someone close to you) is going through it.
Last year I was informed that I will probably eventually need J-tube feeding. And having had the J-tube procedure done many times for testing reasons, when my time comes, I will learn how to place and remove my J-tube, as I learned how to access my own port.
Funny how art can be interpreted--when I saw the video, I thought nothing of the inmates. My thoughts were on how strong and amazing my J-tube friends are. They shed no tears when showing us by video how they insert and remove their tubing. That J-tube is saving their lives, as they are no longer able to take in nutrition by mouth.
That last thought reminds me of something God said to Neale Donald Walsch in Neale's Conversation with God book. God told Neale to live. God did not mean for him to go out there and live life to its fullest, he REALLY and literally meant for humankind to stop thinking that it takes death in order to live.
Sounds confusing, right? It is so much easier to die than it is to live through human suffering, suffering that is a big and necessary component of the human existence. We did not come here to live simple and uncomplicated lives (at least, not this time around). We are here NOW in order to experience exactly what we are experiencing NOW.
Live. Choose to breath and live. Choose to endure all of the horrors until you find your way out of them. And if you never find your way out of them, choose to allow that to be your wisdom, the kind of wisdom that most people will never experience. Live. Live through needles and infusions. Live through feeding tubes and catheters and electronic implants that keep your heart and bladder and colon functioning until they no longer can. Live to see artists like Mos Def utilize their talents for the cause of others. Live to have empathy for war prisoners and the family that cares about them.
Live. Live. Live. Even if you have to live from a bed, as my dysautonomic friends and I have to. Because no matter what, the end WILL come. You don't have to force it. The reaper will pay us all a visit. And just because I am ill, it does not mean that you will outlive me. So live. Live. And live.
For those who are curious about the Mos Def and Guantanamo Bay references, here's the Mos Def video (and my thoughts are with all men--worldwide--who find themselves in prisons, enduring and trying to live):
Thursday, July 11, 2013
Wednesday, July 10, 2013
Tuesday, July 09, 2013
Saturday, July 06, 2013
Friday, July 05, 2013
Quotable: Rep. John Lewis, Civil Rights Icon, on the Struggle to Win, and Now Protect, Voting Rights in U.S. | Democracy Now!
Tuesday, July 02, 2013
Saturday, June 29, 2013
Thursday, June 27, 2013
I don't have to "want" to share my opinions. My opinions "are" tainted. And what happens if I have changed my opinion after airing my opinion?
Bits and pieces.
Contagious words spoken prior to experiencing more wisdom.
Being courageous enough to keep your conditioned opinions to yourself.
Wednesday, June 26, 2013
Tuesday, June 25, 2013
Monday, June 24, 2013
Sunday, June 23, 2013
I am now starring at my screen, contemplating my: "Chocolate is proof that God wants us to be happy" mug.
I now realize that chocolate as a skin tone is what I hope this mug is referring to.
Starring at the mug.
Thinking of Paula Deen's innate ability to say "nigger."
Hearing footsteps on this Sunday morning.
Sounds as if my mom is getting ready for church.
African Methodist Episcopal (AME) Church.
Reminder as to why chocolate people had to establish churches for themselves.
Avoiding going to powder my nose because my illness is affecting my knees and I can barely convince them to bend. And when they do bend (on their own will and time), the pain is fierce; and afterward, I am unable to get them to straighten out to stand.
My legs hate me.
The onset was acute and sudden.
Physical therapy ordered.
Friday, June 21, 2013
Sunday, June 16, 2013
Sunday, June 09, 2013
Saturday, June 08, 2013
*MCAD (Mast Cell Activation Disorder)
Thursday, June 06, 2013
My pain is up and rising. I go to bed at a 5 (already medicated) and wake-up at a 7, which my meds will hopefully bring down to a 5.
The pain is all-consuming. And my favorite high-level pain remedy is backordered (yup, med companies sometimes provide one sector with too many of a product, leaving pharmacies out on a limb.
And I feel for my pharmacist every time he has to tell me that one of my pain meds is backordered, since he knows that I only request certain pain meds when my regular medicinal pain regime is not keeping up with the pain. He sees the begging-for-relief in my eyes. Just two days ago I was lying on his floor (yes, on the pharmacy floor). My body had momentarily given up functioning properly (well, MY Dysautonomic "properly").
So I wait. And wait some more. Trying not to lose my mind. If it rises anymore, I will have to contact my doctor. and for those not acquainted with the prescription-pain-relief phobia in America, be grateful, cause it probably means that you and yours are physically well and healthy.
Big Corporation and Big Government, please stop your paranoia. Statistics show that only a small number of patients abuse/misuse/overuse their narcotic pain meds. I am not on a narcotic pain med (which would be the best so that I wouldn't have to take FIVE non-narcotic (but strong!) pain meds instead of ONE! narcotic.
One of my favorite lines that an advisor spoke to Queen Elizabeth I during a difficult decision-making time for the Queen:
"A prince should be careful to not be afraid of his own shadow."
Sunday, June 02, 2013
I am sorry to inform the future generation that each day since 2013 started, the majority of human activity has lead to a more rapid decline in the "love-thy-neighbor-as-you-love-yourself" territory.
We have no choice but to coexist; in the end, the truth of that will not have changed, no matter how many muthafucking "neighbors" you have bashed over the head with bats. Dumb asses.
Saturday, June 01, 2013
Friday, May 31, 2013
Did I mention that my walker (with a seat) is my best and constant companion?
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.
Thursday, May 30, 2013
Thursday, May 23, 2013
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
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
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.
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.
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.
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
Saturday, May 11, 2013
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?"