MissNikkiAnn's House: Autoimmune Disorder

Showing posts with label Autoimmune Disorder. Show all posts

Friday, July 12, 2013

"Mos"t "Def"initely A Dysautonomic Force Feed?

Just want to advocate for all of my fellow Dysautonomics who know all too well how J-tube (jejunostomy tube) feeding/testing feels. I have had a few tests via j-tube, while I was fully awake. I also have many Dysautonomia friends who receive all of their nutrition via J-tube. And even more, I have young friends who know how to put in and take out their own tubes (not that difficult really).

What does this have to do with Mos Def and the Guantanamo Bay video? The procedure in and of itself is not painful. On the other hand, if you are an inmate who's been refusing oral eating, and you're chained to a chair--possibly thrashing about--this procedure/torture could be the hell you never dreamed of.

Now, what is MissNikkiAnn's overall objective (since it's no disrespect to the art that went into that compelling video), I want my curious readers to know that J-tubes are a regular thing for us Dysautonomics--just like accessing our own ports and administering our own infusions at home. So take that information and imagine all of the other things that you don't about our lives with Dysautonomia. If you see me in a store with my walker, that in no way means that I am okay. The things that I have to do at home and at hospitals and doctor appointments will go unseen. The best thing to do is to assume that you can never grasp it until you (or someone close to you) is going through it.

Last year I was informed that I will probably eventually need J-tube feeding. And having had the J-tube procedure done many times for testing reasons, when my time comes, I will learn how to place and remove my J-tube, as I learned how to access my own port.

Funny how art can be interpreted--when I saw the video, I thought nothing of the inmates. My thoughts were on how strong and amazing my J-tube friends are. They shed no tears when showing us by video how they insert and remove their tubing. That J-tube is saving their lives, as they are no longer able to take in nutrition by mouth.

That last thought reminds me of something God said to Neale Donald Walsch in Neale's Conversation with God book. God told Neale to live. God did not mean for him to go out there and live life to its fullest, he REALLY and literally meant for humankind to stop thinking that it takes death in order to live.

Sounds confusing, right? It is so much easier to die than it is to live through human suffering, suffering that is a big and necessary component of the human existence. We did not come here to live simple and uncomplicated lives (at least, not this time around). We are here NOW in order to experience exactly what we are experiencing NOW.

Live. Choose to breath and live. Choose to endure all of the horrors until you find your way out of them. And if you never find your way out of them, choose to allow that to be your wisdom, the kind of wisdom that most people will never experience. Live. Live through needles and infusions. Live through feeding tubes and catheters and electronic implants that keep your heart and bladder and colon functioning until they no longer can. Live to see artists like Mos Def utilize their talents for the cause of others. Live to have empathy for war prisoners and the family that cares about them.

Live. Live. Live. Even if you have to live from a bed, as my dysautonomic friends and I have to. Because no matter what, the end WILL come. You don't have to force it. The reaper will pay us all a visit. And just because I am ill, it does not mean that you will outlive me. So live. Live. And live.

For those who are curious about the Mos Def and Guantanamo Bay references, here's the Mos Def video (and my thoughts are with all men--worldwide--who find themselves in prisons, enduring and trying to live):

Sunday, June 23, 2013

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...

Thursday, May 19, 2011

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!