Saturday, October 27, 2012

#Dysautonomia Tweet-A-Thon by Dysautonomia SOS

The article below has been copied from:
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

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

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

Let’s do this. 

Wednesday, August 15, 2012

Adequate: McDonalds Coffee In A Starbucks Mug

Feeling like hot boo boo.  Sitting in my recliner (which I never do, I have reserved it for guests) with a blanket over me, popping pain meds that seem to have forgotten their job responsibilites???  And sipping on McDonalds coffee out of my Starbucks mug (mom went and got coffee; I was too sick to french press my Starbucks coffee). is customary, I have a urology doctor appointment today; so there goes a quiet day, which I rarely get anyhow (chronically ill parents have a double whammy of a life and it rarely invovles naps and rest).  Yesterday I had to call my allergist and go in for a breathing treatment, which led him to placing me on Prednisone (a heavy steroid) for 5 days--a sista is not getting much air by inhalinf and is then not exhaling well ("Waiting To Exhale," anyone?).

I'm out.

"Be good.
Be a good patient.
Be in the moment of having proper and above adequate healthcare."


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Thursday, August 09, 2012

Hospital Day

There's this...


And now this...

I tried.


Willow Smith: "Keeking" It

Found this little piece (Keek allows up to 36 seconds of video) by Willow Smith.  I listened to it over and over.  We are bombarded by hyped-up and electronic music, so it was refreshing to see a young person showcasing their own piano piece--not synthesizer, but PIANO (LOL).

Monday, July 30, 2012

Sleep? Study

You know just about how much sleep I was able to get with all of this going on.

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Sunday, July 15, 2012

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"

*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.

Tuesday, July 10, 2012

Shit...I Can't Breathe!

I am here.  Just trying really hard not to go under.  The doctor/hospital/testing schedule of the chronically ill in America is very time-consuming and is equivalent to a full-time job with overtime and no benefits.  I literally am never home because of doctor appointments, infusion appointments and tests (lab work, x-rays, scans...blah blah blah).  I point out the phenomenon as an American Epidemic because in other countries the sick receive most of their attention and care at home (even some tests and lab work).  I do believe that such a way of treatment can be a positive to the mental/emotional/physical state of the patient.  Some folks have a vision of the chronically napping and shit.  I can assure you that I do not nap, that when I do it is because I am lacking in enough oxygen to function awake.  I literally mean that my body forces me to sleep because it does not have enough input (air) for output (activity).  The item I am holding in the above picture is an incentive spirometer, which exercises my lungs.  Yup, lung failure and diaphragm weakening all around here. In the matter of a week, I went from no breathing aides to 3 inhalers and this here spirometer; and have gained myself an (in-home) sleep study.  

I just do not breathe much without having to tell my body to do so.  Do you get that?  Breathing is a component of the autonomic (automatic) functioning of the body, so a normal body breathes without the person having to think about it.  Not for me, I spend my day "making" myself breathe.  And at night?  Well, that's the problem.  It's one thing to expend mental and physical energy during waking hours to monitor breathing, but at night...well, let's just say that death during sleep is one of the standard demises for dysautonomics like myself.

But I must take my leave.  Why?  A doctor appointment.  So surprising!

"Be good.
Be patient.
Be in the moment of your breath if it works for you automatically."


Wednesday, July 04, 2012

FANTASTIC FIVE YOU TUBERS: @MissNikkiAnn Made TuckerZone's Cut!

Nidge is a wonderful guy and a great supporter of YouTube's chronically ill community.  He is a rare and much appreciated find, talented and compassionate.  I feel blessed to have been spotlighted on his vlog.

Wednesday, June 20, 2012

For My Family/Friends/Others Wanting to Understand My Dysautonomia

This is an awesome resource about one of my dysautonomias. 

*Please be forewarned that it is not for the faint of heart, this is for those ready to tackle the truth of the matter.

Click the link: Multiple System Atrophy.

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Wednesday, May 23, 2012

Hello Blog

I thought it important to stop by and see how you (the blog) are doing.  Let's face it, since falling ill with various (basically, too many to mention) dysautonomias...what?...3 years ago now?, I had found it accordingly difficult to write.  So many neurological issues and medications that lead to total and utter brain fog and inability to stay focused on tasks.  I had always prided myself on my ability to focus.  I am a listener by nature and love to...listen.  I never lost focus in school nor college courses because of my gift to not get bored when someone is talking.  I mean...I could sit for hours listening to lectures.  But now?  Shiiiiiiit!  My attention span and mental processing skills rival that of a gnat.  I have absent seizures where I come-to and realize that Sir (my 7yo son) has done stuff that I was totally unconscious of WITH my eyes wide open.  But those things come with my illnesses (yes, plural), and I am finally three years into adjusting, which makes talking to you, blog, more doable. 

So, I hope you are well.  Your sitemeter tells me that you have many visitors each day; it makes me happy to know that you have gone ahead with your life inspite of my not being here to help you.

Blog, my advice to you...

"Be good.

Be patient.

Be in the moment.

Be happy to have readers."


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Saturday, May 19, 2012

Preakness 137: The Contenders | 2012 Preakness

My bet is on I'll Have Another.
PPSilkHorseOwnerTrainerJockeyBreederMorning Line
Tiger WalkSagamore FarmIgnacio Correas IVRamon DominguezRiver Bend Farm30-1
Teeth of the DogJ. W. SingerMichael MatzJoe BravoRoyal Pegasus15-1
PretensionKidwells Petite StableChristopher GroveJavier SantiagoSequel Thoroughbreds and A. Lakin & Sons30-1
ZetterholmWinter Park PartnersRichard Dutrow Jr.Junior AlvaradoAnthony Grey20-1
Went the Day WellTeam Valor International and Mark FordH. Graham MotionJohn R. VelazquezJames Patrick Delaney6-1
Creative CauseHeinz SteinmannMike HarringtonJoel RosarioJames C. Weigel6-1
BodemeisterZayat Stables and Southern Equine StableBob BaffertMike SmithAudley Farm, Inc.8-5
Daddy Nose BestBob and Cathy ZollarsSteven AsmussenJulien LeparouxPatricia Ann Elia Trust12-1
I'll Have AnotherJ. Paul ReddamDoug F. O'NeillMario GutierrezHarvey Clarke5-2
OptimizerBluegrass HallD. Wayne LukasCorey NakataniBluegrass Hall30-1
CozzettiAlbaugh Family StablesDale RomansJose LezcanoSoc. Agr. Santa Elena De Chimbarongo30-1

Sunday, May 13, 2012

Sir: Explained

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My Mother's Day Gift to Myself and My Motherly Viewers

I am treating myself to Satsang with Mooji as my Mother's Day gift to myself! And I share it with all mothers out there. I love you all. Moms rule!!!!! Hells yeah!!!
Live broadcast by Ustream

Wednesday, May 02, 2012

MissNikkiAnn Supports: CT Seven Sisters (@womenwill)

Interdependence Day Is On Its Way

The following email was recently sent to our supporters.  If you are interested in our Interdependence Day, please contact Cassie at for more information.
~Seven Sisters

To kick off a season of resistance to the oligarchy, the seven sisters are gathering together all those throughout the state of Connecticut and beyond who sympathize with the international Occupy movements, all those who experience hardship at the hands of the oligarchy.

We declare Saturday, June 16th, 1-5pm @ Bushnell Park, “Interdependence Day,” a day for families, friends and citizens to gather together in recognition of their resistance to the oligarchy for a potluck in the park, featuring music, speakers, and information tables.  When the uber-rich are threatened, they show police force, so when the people are threatened, it’s time to show people force.  Let’s show the powers that be that we have numbers.  Let’s demonstrate to ourselves that we have power

For the past three months we have organized within Hartford, Bridgeport and Waterbury.  Now that we have a permit, it’s time to push our organizing into overdrive, and for that, we need YOU!

We are asking of you the following:

1.       Organize your community/neighborhood,
2.       Identify the immediate needs and concerns of your community,
3.       Locate speakers that can speak to those needs,
4.       Suggest bands for the event,
5.       Arrange carpools and/or buses, and
6.       Be at Bushnell Park on Saturday afternoon, June 16, 2012.

Please respond to this email in the affirmative if you are able to organize your community and attend. 

If you decide to participate, and in preparation for the big day, we will convene conference-call “town halls” for the day of May 16th in every place where we are organized to see how each of us can contribute to making this event a success.  You will be receiving more information on the town halls in future emails.

Also, depending on your social media needs and preferences, feel free to:

Various groups and Occupies are planning direct actions throughout the state for the spring and summer.  By gathering together for one day, in numbers, we can fuel our momentum for the season.

“Let’s show the oligarchy that we have power in numbers.”  ~Seven Sisters