An Invisible Illness, Not so Invisible, and Family: GET YOUR DOCUMENTS IN ORDER!!!!

I am sure many have heard the term before.  Good for you.

What have you done for a young person forced to use crutches?

A young woman who a spare pair of glasses would mean the world.

Or someone who is in constant, agonizing pain, every minute of every hour of every day

every week, of every month, of every year, and probably will be for life--and it is a burning physical pain-

one no one else can see, one no one else can see the flames shooting off her entire body;

And in the hospital, proper pain control being a dream to begin with,

A place you are supposed to have the right to have your pain is

relieved to the greatest degree possible-and to have that is a rarity-

Where conversations like this are commonplace:

You tell them you are in more pain-it is that you are a:

Nut case

Drug addict/druggie

Not to be trusted

If you still hurt; the doctor assumes you are drug-seeking-when 

Usually if you are diagnosed properly, dream on 

getting any other of your docs to buy it.

Or (my favorite); "You're way too young for all this!"

Your illness means you must be treated like a small child,

You ARE mentally a small child

You are mentally deficient

You cannot care for yourself physically or mentally

You cannot manage your own money/bills

You are basically, to sum up this part: a total fucking moron!

And when they find out otherwise-boy are they pissed!!!

Since my bipolar diagnosis, and any person with bipolar who goes through that period of irresponsible decision-making, or they get in trouble with drugs, alcohol or the law, hell, a combination thereof:   But "normies" do it also, and in fact, 

the halls of AA (and NA for the most part) are more full of "normies" than the "mentally ill."  

But the mentally ill seem to be treated better than those in 

chronic pain-or RSD:  and no one-when you're in a hospital does anything but question-

No matter how good of a history you have given them!

And why is there still such a stigma to it?

But really, I don't know which is worse:

1. Telling someone you have a mental illness, if that is the case
2. Telling anyone you suffer chronic pain, OR
3. BOTH

Well, as Mark Twain (and others later) said, "The reports of my demise are greatly over-reported," and though he read a favorable account of his life, if my family wrote it I would be a total lunatic who can't keep her house clean and what a pigsty it is, and that I am a boil on the butt of humanity. 

Naturally, I do the level best to ignore this sort of BS, and anyone reading such trash would know that no human being should be talked like that, and the exaggerations are as stupid as they sound. 

 

 But on the medical aspect, I am now well hydrated (it took almost the entire weekend, and I had a bunch of electrolyte imbalanced they had to correct before anything can be done. I admit I am a WEE BIT ticked off both with myself and the docs that (hospitalists) that idk-maybe they were in cahoots with the family-and yesterday was one GIANT nightmare (I have always made the request people let ME update and make calls, unless otherwise agreed (and it hasn't been), but if there was acompetition, but Saturday between 8am and 10am, seven calls were wearing me thin and I was not doing well, so out of the ROOM went the phone so my dad, even after several messages-as has been done in the past with success, he shows up-throws the light on, and like the vampire I am, in addition to bad allodynia for lights/sounds, claiming to understand (CRPS to that one) but my brain had been wonky on Friday because my electrolytes were severely whacked-I was also exhausted of FIVE MONTHS of being sick. 

Progression:

 

Sunday

Then suggests-no Happy Easter, zippo, that I am not able to "live independently" as if he has any say in the matter...so the RN's (God Bless them!) told him basically, "Get out-NOW, or Security will give you a hand." 

All the same, if he had made more than one or two attempts to help out in 5 months?  One of those times, I didn't have so much as a gallon of milk in the fridge-I told him (on a Thursday) as Instant Breakfast being about the only way for me to get calories.  He said, "I'll see you Saturday;" when the convience store around the block has gallons of whole milk for $2.99; so I starved for 2 days.  I slurped down the IB wheen I did get the following Sunday, and got sicker.

Then Asshole says I don't want to move.

But I won't look backwards. I, contrary to his claim CAN'T WAIT to get the HECK out of my apartment and into the new one, and another point he felt necessary to attack with: I have said nothing for WEEKS that I can't wait. No, my memory isn't PERFECT--but meds, etc are ALWAYS taken appropriately-very anal on that mark. 

Apparently though I am nearing 40 they think I am a hapless MORON? All I can say about this--now that we are back on track-is that a bit of advice: If you have "family issues," chances are if you became unable to make healthcare decisions, they WILL go to your next of kin (aka FAMILY) unless you LEGALLY specify otherwise. I can see them, and it's very troubling, they would not allow a peaceful "exit" and would either just withdrawl ALL CARE and allow me to go painfully--and that is so disturbing. I have a form type of document, but anyone else who would know, I would love to know what (and where) to go perhaps to make it specific, and I guess "Ironclad" that no one person that is either a blood relative or MARRIED to, etc, be involved in AND PART of my healthcare (or otherwise, psychiatric, for example; plug any holes, I guess? (sorry about the length).

 

I went to http://www.legalzoom.com.

My papers are in order for a:

• Power of Attorney
• Advanced Directive
• Living Will
• Durable Power of healthcare attorney.

 ALL DOCUMENTS, ESPECIALLY PERTAINING TO COMPETENCY MUST BE SIGNED BY A PHYSICIAN, WITTNESSED AND NOTARIZED!!!!

None of my famly is involved