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...

Chronic Pain

I don't mind (anymore) that I NEVER have a pain-free day.  Hell, I don't even remember what that feels like.  My normal pain-level day is 3 and up (10 being dying (literally).  I was forced to come up with a scale after being asked a million times at the E.R.

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."

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.

MissNikkiAnn: Coping with Her Life

Elliott Krane: The Mystery of Pain as a Disease

My doctor played this video for me during my appointment this week, and I thought I'd share it with you.  I have some of the most amazing doctors (and I have a couple of the "other kind" as well).

My Words: Hospital Day

The day is coming to an end. It was a long and miserable one for me. I got really sick yesterday; began fainting while driving from one appointment to the next, so I skipped the second appointment and went home. I was so sick that I had to crawl from the back door from which I'd entered to my bedroom.

Then the sickness continued into today. My poor infusion nurses had to call my doctor to request intravenous Zofran and some Benadryl. Then I took a Tramadol to attemp to ease the pain. I called mom, on the verge of tears and a nervous breakdown, told her that she might have to come back to the hospital to see about me. What she could have done for me? Not a dayum thang.

The only good part about my day was tha AMC is having #MobWeek, so I got to watch the likes of Al Pacino and Robert Deniro, two of my favorite guys.

Now I'm finally home and in the bed. But dontcha know, life doesn't take a vacation, only the final permanent one, and that's more like retirement. Anywho, I got two denials today, which fit perfectly with the denial my mind is in when it thinks it can outsmart Dysautonomia.

Sir and I are calling it a night. Maybe you should, too.

"Be good.
Be patient.
Be hood when necessary."
~MizzNikkiAnn

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Living With Dysautonomia News

We're sick. We're broke. We're American.

Not a single person is exempt from the inexplicable. Sometimes this is the kind of story that life hands you. How do I know? I'm living proof.

Be good.
Be patient.
Be in the moment.

~MissNikkiAnn

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!

Documentary Interview with 2 girls with CFS (chronic fatigue syndrome) b...

Along with my Dysautonomia/POTS, I have Chronic Fatigue Syndrome. I relate to this documentary.

I Had Two Mini-Strokes (Transient Ischemic Attacks or TIAs), Pt. 2

I Had Two Mini-Strokes (Transient Ischemic Attacks or TIAs), Pt. 1

I Am Sick

For @ironbith (Re: Using Illness As An Excuse)

Familial Dysautonomia

Familial Dysautonomia is a rare Jewish Genetic Disorder. It's first cousin is Non-Familial Dysautonomia, which is what I have. But both exhibit the same symptoms and issues.

I'm In Some Serious Pain