Sunday, May 18, 2014

Danielle Nicole and the Refeeding Monster

ELEVEN DAYS?!

Holy cow, no wonder I've been so cranky. I haven't posted to this blog in almost two whole weeks. *Tsk*tsk* now that cannot happen again. Though I must confess, I attempted to bring out something yesterday afternoon, but my fingers outpaced the rest of my brain and I ended up with some kind of freaky whack-job of words sewn haphazardly together in the essence of Graham Greene on an off day or Poe when he wasn't hitting the bottle.

oh, the line between genius and insanity...

 I had a five day stay at St. Mary's for distended abdomen ad nauseum (sorry, that was a pun I couldn't resist...), plus to make sure there were no nasties making camp and threatening this PICC (there weren't. Yup, still a PICC. Yup, still works perfectly fine) and made a relieved yet eventful return home this passed Thursday (15 May). I only throw the term eventful in there because I ended up coming home with some pretty bad skin breakdown and a mystery breakout on my face as well as multiple other inflammatory markers (a.k.a a very odd allergic reaction to either the vancomycin or rosephin). Most of the worst is gone thanks to my normal washing my face daily with real cleanser for sensitive skin rather than this



This is a bottle of foaming lies. It is. This stuff really hurts when diluted and straight for perennial care.

Eff that. I use this instead



Oldest trick in the book. They didn't have foaming cleanser in the 1970's (apparently..so I've been told).. They didn't even have disposable briefs until within that decade. Nurses -- especially nursing home nurses, along with their techs -- are very resourceful and I am very broke (ish...I have money, just not enough to throw at a bottle of liquid nightmare that will make my wounds worse in comparison to a <$3 prodct I already keep in the house that can and does work).

But I didn't sidle up to the keyboard to rant about cleanser. I didn't even come here to rant about anything at all, but merely to muse a bit. I understand at this age of almost 27 (June 21st! I must be the only person who is at once terrified yet thrilled to gain years under my wings like gusts of wind) that the answer to the most perplexing queries I may have in my own walk in this life is hidden in the shrubs or up in the trees along the pathway.

They are never at destination points.

I make it no real secret that I advocate for mental health, I have a lot of experience as not only a patient but an advocate as well, and also stand by my own dissertation that all of one's woes are literally in their heads!

Change the angle, change the view...change the outcome.

My surgeon has uttered this more than once (rather, several times) that it's peculiar (she didn't use that term. It just sums up all the other verbs that have been used between us both) that I went from a functioning gut to gut failure in a matter of months. This is not at all mere happenstance! This is not at all a condition that is just bound to happen! It's relatively rare, and most are little kids. There is a tiny percentage of adults, enough that in the entire world wide web of online support, I can count on one hand how many cases I have encountered in my peers that includes my own.

In the practice of mental health alone, a diagnosis hinges on the doctor's (a psychiatrist) perception of behavior within a person in a matter on minutes. Other forms of medical science take much, much longer than this with a higher rate of accuracy, but the fact of the matter is gastrointestinal disorders are VERY tightly linked to one's mindset. I am a very firm believer in self fulfilling prophesies, whether or not they are intentional or attitudinal.

My diagnosis in 2007 of gastroparesis did come dragging alongside it the expectation that my digestive impairment would grow progressively worse. I am not alone. In most support forums, these questions are asked (will I die from this?!) and statements are -- even declarations -- are made (I will need further intervention and this would have happened to me anyway despite [enter circumstance here]).

With that said, you can see what has happened. Last May I was so grateful to not have died of septic shock that I was able to successfully take in nutrition by mouth. Not all of it, but enough of it to make a beautiful difference...and even later, it accounted for 80% of it. Somewhere along the way, the spokes of this locomotive to Wellness started to stick, stop, sputtering like fool found drunk in an alley. Some of my neurological issues roared in a nasty fashion and BAM gastric feeding fails in the form of food only to improve and then fall away.

BAM jejunal feeding works for ten days after a longer inpatient stay, and then severe malnutrition rushes in, overwhelming me and a care team that shares the dream I have of moving Forward

BAM GI failure steps in, I am dropped by local professionals left and right, and just given the statement that the only options left are either rehabilitation along with other treatments...or stay on TPN for however long that I cannot determine.

I think, in tracing these steps backwards, that the trigger of drastic neurological changes as well as my own brand of crazy brewing in this time deserves some very careful review. In my own heart of hearts, do I truly believe that this severe of a decline can happen by biology alone?

In my own circumstance, I cannot. The correlations between my neurological and psychiatric impairment are followed by decline in autonomic nervous system dysfunction are too significant to pass off as merely coincidence.

If I leave this decade and the one previous, I visit stories my mom retells to me at times in her own attempt to grasp hold of and try to make sense what senseless events her eldest child is having to go through (her smile is lovely, but those eyes hold the more tragedy than any other could recognize beyond me and certain family members) of odd inflammatory and digestive anomaly. Symptoms that came and went. Life struggles that presented and we all survived -- more or less whole, but not necessarily healthy.

We took a vow of silence without actually saying so and chose to cope in dysfunctional ways all.

My drug of choice was an eating disorder.

Forgive me, but I have not even once heard of an account of a person who has recoverED from an eating disorder. In most cases, the disorder only adopts new job titles: star college student, accomplished writer, master martial artist, prima ballerina.

Gastroporetic.

But all of it is still an eating disorder.

And mine? Not ever properly dealt with. This is what happened:

My brother died
I became angry
I resolved to put the chapter of addiction behind me
I pantomimed a successful recovery...

...but my thoughts are still very messed up. They have just taken on new form and found a completely new set of numbers to obsess over.

GI disorders are also diagnosed by a doctor's perception of someone, and in my case it was reinforced by more than one doctor as well as other people in my care team, online forums, and myself.

Biology?

Or behavior?

I don't know. But there's only one way to find out.

Let's see what happens.

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