A Confession

I still have no clue who Justin Bieber is or how he gained his fame.  So as a woman who was born in the 70s and grew-up during the 80s pop culture scene of BET and MTV, I am (at this moment) trying to invest FIVE MINUTES into researching this guy.  My main goal is to listen to ONE song.  But even as I type this, I feel my interest waning (seriously. my illness has given my once-focused mind ADD.).

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.

Racist legs.

Restless legs.

The onset was acute and sudden.

Overnight.

Rheumatologist visit.

X-rays taken.

Physical therapy ordered.

Wait...

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.

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."

~MissNikki-ICan'tFuckingBreathe-Ann

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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CHANGES: Living with Postural Orthostatic Tachycardia Syndrome, a documentary

MissNikkiAnn's Life

Solutions for heat intolerance

Living With Dysautonomia News

I Need Your Help

Intravenous (IV) Fluids Matter

3 people in same family with neuro immune disease

I have quite a few YouTube friends who have this disease. And though I do not have ME (Myalgic Encephalomyelitis) myself, ME and Dysautonomia present with lots of the same symptoms and syndromes.

But that's not what's most important about this video. What shocked me the most was knowing that ME hit an entire family. This woman is caring for her THREE children who are suffering, living under the same roof. I love the part where the son talks about not having seen his sibling in FIVE MONTHS, even though their bedrooms are next to each other. They're symptoms are so bad that they never leave their bedrooms, let alone the house!

I am proud of this mother's strength!

Dysautonomia: God, Prayer and Meditation

Be good.
Be patient.
Be in the moment.
~MissNikkiAnn

Have a Heart

CHANGES trailer

Chronic Illness and Friendships

A demonstration of P.O.T.S. seeing is believing!

FYI: This is similar to my heart rate readings.

DYSAUTONOMIA

This is so sweet and earnest.

Dr. Anne McIntyre Interviews the boy Wessely had sectioned.

~"Do I have to die to prove how ill I feel?" (Quote taken from video)
That question is still resonating with me. My gosh!!!

ER? What's that?

Open bathroom! Weird

Dr. Benjamin Levine exercise program for POTS patients