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?"