Another Dysfunctional Dysautonomic Spring and Summer

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?

#Dysautonomia Tweet-A-Thon by Dysautonomia SOS

The article below has been copied from: http://dysautonomiasos.tumblr.com/

SUNDAY! The ORIGINAL Tweet-A-Thon, taking place with anyone who wants to be involved. Let’s get #dysautonomia trending the right way!

For something to trend on Twitter, we all need to tweet at the same time! Not spam people with tweets all day long, but tweet #dysautonomia in mass. That was the original plan on the date above. Other organizations have chosen to take this idea we came up with and do it their way on a different day, and that is fine - we want as much dysautonomia publicity as possible! BUT! We have to be careful to NOT SPAM, or it defeats the purpose and ends up clogging up people’s twitter feeds, and they don’t click on links to more info.

Our suggestions for participation, in conjunction with DINET, can be found here.

We also will host a #dysautonomia TWITTER CHAT at the same time - SUNDAY 8PM EST.

We want to hear how your condition affects you!

The world needs to know! Include or search for #dysautonomiaTC (for Twitter Chat) to participate. We will ask questions to get the conversation going, but feel free to participate as you see fit.

We are dedicating the event to an amazing lady who actually came up with this idea, Miss Nikki Ann.

She suffers from a multitude of dysautonomias and other health issues, including POTS, PAF, MCAD, and many many more. She originally came up with the idea to tweet about dysautonomia like crazy, and we (being me, Claire) discussed it at length in terms of organizationand how to rally the online troops. She has been very sick, and busy trying to get treatment and firm diagnoses, but she still takes time to be very active in the online dysautonomia activist community.  Find her story and learn more about her here:

On YouTube: MissNikkiAnn

On Twitter: @MissNikkiAnn

Blog: Miss Nikki Ann’s House

You can also find a special feature she did for our website (www.DysautonomiaSOS.org) once we are launched - this weekend!

Come chat  (#dysautonomiaTC) and tweet about #dysautonomia - at 8 PM EST THIS SUNDAY!!!

Let’s do this.