Been coming down from lots of stress, I suppose....

Otherwise, I am always waking up with a sore jaw from grinding my teeth which is either a "stress thing" or it's a "pain thing," and we're pretty much on top of the pain thing; and so I can even crash out from total exhaustion; but still wake up catching myself grinding, or with a chipped tooth from grinding my teeth...

My head throbs, my jaw aches from the grinding~~my dentist makes rubberized night guards at no charge because I have cracked through the plastic ones, and I lose them...terrible as it sounds.

I have an appointment onn the 4th..can't wait to get another.....

Dermatology on the 30th, Praise God.  I had to go to go to the ER to get diflucan because of a potential increase in my Teg--but my PCP can't pick up the phone?????  No, suffer for 2 weeks with an open infection that would put me in the hospital by the time dermatology sees me cuz someone can't be troubled to pick up the phone???

Then flack from the ER....do you even have a PCP???

What?  You deaf???  Gave up her name when I came in; she just refuses to treat!!!!!  Gone are days of little house on the prarie....

But them ain't gettin' paid in apples and chickens either.........

They deserve to, but they're not....guess they think I am a 'tard too.....


I went through hell on earth also with ATT and Dell's "Customer Service" that I've been running non-stop headaches....

Doesn't help the headache department!!!

My Mom's Retirement = Good for her; but is it good for me?

Mom, I love you with all my heart;
I hope this you certainly know by now...
I know you want to help;
good lies only in your heart,
this  I also know by now,
after thirty-seven years on this earth with you
I love you now more than ever;

And I say this from a place of deep abiding love,
spend what time you have left with Nick
spend it with Nick....you didn't retire for me,
you retired for yourself, after a lifetime of hard work...
You've earned the right to relax,
not to come up and clean my house,
and bring me groceries, help me...
Because when you do these things
you are not helping me to be the proper 37 year old.

A 7 year old, maybe, but not 37.
I know this isn't easy to hear,
all your hard work with only love in your heart...
But showing me love would be with or without
a disability, which shouting it in the store
was quite the ultimate humiliation,
though I know you didn't mean it that way,
it is how it felt~~I call it as I see it
You are the one who taught me that....

But take your retirement for you;
don't devote all your time to me....
You haven't even sold the house~

So don't count the chickens before the eggs are hatched
or however the saying it goes~ I hope you know
what I mean, and that I only say this because I love you...

Accepting Help

My birthday is coming up soon, hard to believe I'll be 37....

So much has happened in the last year, I couldn't begin to sum it up...I wouldn't know where to start. I feel like I've been on the spin cycle, and whenever I get my head out for air, it gets shoved back in....and on and on and on.

It's only 8pm and it feels like 11pm...and now I feel like I could just sleep for hours and hours.

I have no appetite, but slammed some phenergan and forced myself to eat. Meds don't work if there's nothing for them to work with.

I got approved for a caregiver, and someone to help with showers, and to help with shopping and all the stuff no one has been, and no one will. It's gonna be a challenge learning to accept it.

I know I can, I know~~I love this, and it's what I need. But scary at the same time...

SELF-APPOINTED MODERATORS

You know, it seems we have some self-appointed people here who are decideding they have nothing to do with your time rather than stand in pass judgement on the rest of us.

To decide who it's okay for some of us to be "friends" with and who it's not. To put up very telling comments on articles .....Telling about YOU, not the author....Grow up, girls.

For those of you who don't like an article, or hate the author....don't read it!!!

You blame me for making this community what it is...if it's a look in the trash can, rather than perhaps a look in the mirror is in order.....

This was once upon a time a "support network," but a few, immature, self-appointed mediators have turned it into a place where no one knows who to trust, where no one knows who they are "allowed" to be friends with, and are deccimating their lists because you--you know exactly who you are--have taken it upon yourselves to decide what this site and what is not.

People don't want to hang out here anymore~~

It's become a stressor, not a helper, no longer a support. You have your cliquish little communities, and perfectly innocent people are falling victim to your nastiness, falling victim to your hideous games. People have specifically told me that you are setting "the fear of God" into them just about, and that was why I was removed from their friends' list-->they no longer knew I had anything to do with w=a ! Not because of me!!! Or anything I have done....

I used to enjoy site messages. Then grew to dread them and never know what friends are going to say to me because of something fed to them by 2 nasty old bitties with nothing better to do would have to say or doll

A word of advice:

Get a cat~if it would put up with you and not pee on the floor, in your houseplants, or on you.

Buy a houseplant if you can keep it alive.....

Get that thing called a life unless you've chased everyone else away.

I'm grateful to say I have friends beyond this place, despite what you think of me or not...My page was private, yet someone who should have no access seems to know I am finding "healing in my journals." How would you know unless you have people doing your dirty work you aren't woman enough to do yourself.

And V2, for someone who said they swore off leaving me alone, you have a lot to say about what a write in my own thoughts; and in my articles. I'd hardly call that leaving me alone.

So I leave YOU--go 404 as they say by choice and at peace with it; I got a nice gift from my brother, and so much from my friends. Much to look forward to with my family and my doctors and this thing called hope.

But no thanks to you.

I found it inside myself.

P4P is not the only “support site” out there; and to think so would be arrogance typical of the main self-appointed moderators that have turned this formerly decent site into warring factions where people are apparently afraid to even have certain people listed on their “friend's” list, rather than deal with the 'fallout' of exercising their right to what is listed in the Bill of Rights as “The Right to Free Speech-on a website where I am supposed to at least be able to speak my mind!!!!

If we think P4P is the only “support site....” it would be like saying we are the only ones who have RSD/CRPS if our...

But in terms of that, the arrogance of the two-facedness in the infants who are so publicly cat-fighting are only dragging P4P down with themselves and through the mud, while claiming to “love this site.” If they did, they would go 404 and never return...that is the only way to make it look better now.

I left because of fever-pitch of drama...and my health couldn't take it!

But it has caused me to realize these sites are a dime a dozen, much all the same.

Personality Disordered, and drama run rampant, and the people I grew up made my life hell.

Not responding drives them crazy. That is how I respond now; and it drives them over the moon......and when you've got their number, that too, also makes them more insane than they already are.....

When the drama presents itself—and that is what these two are up to with practically sitting at the computer, posting to make everyone up in a tizzy with their stupid posts. Then, not being woman enough to leave up the original post that made the whole problem in the first place, and pulling them down—that's right, not woman enough!!!

Not responding drives them crazy. That is how I respond now; and it drives them over the moon......and when you've got their number, that too, also makes them more insane than they already are.....

When the drama presents itself—and that is what these two are up to with practically sitting at the computer, posting to make everyone up in a tizzy with their stupid posts. Then, not being woman enough to leave up the original post that made the whole problem in the first

place, and pulling them down—that's right, not woman enough!!!

Girls, you are in the “big girls” sandbox, whether or not you deserve to be. Grow up and act like you at least belong there.

Don't worry about me coming back under “Jenna McK” or any name; I am adult enough to come back for any of this stupid backbiting and stupid childish games—why would I open another account here—let alone under multiple accounts as some have done—despite your crap, I have managed to make a few friends along the way.

Let us be clear on one thing; no-make that two: I did not go “404” because anything yo have done—save the volume of drama; you certainly don't deserve credit for that

But wait and be clear on this:

• You need to get some help~right quick before you or someone else gets hurt:

physically or emotionionally........

• Personality disorders are to be taken seriously:

◦ Cluster B Personality Disorders

Antisocial Personality Disorder is more commonly diagnosed amongst

men.  They are at higher risk for anxiety disorders, substance abuse, somatization disorders, and pathological gambling.

Borderline Personality Disorder is associated with a risk for substance

abuse, eating disorders (especially bulemia), and PTSD. Suicide is completed in
8-10% of patients with BPD (far higher than most mental health disorders).

Histrionic Personality Disorder is associated mostly with somatoform disorders.

Narcissistic Personality Disorder is at high risk for anorexia and bulemia......as well as depression

The most current literature shows thats that people, particularly with BPD, HPD, and NPD, in attempts to shine the lights on themselves will show up on the online sites with “horrifying medical histories to shine the lights on themselves....and tell stories of “courage and dignity” in the faces of what often woud have spelled death for most~~tests of true courage in the faces of death for anyone else.

And these are often the ones that start the battles...and they may win that battle, but they lose the war. They are pretty much on the phone with each other....waiting to post, and then to pull their respective posts......

You have to watch your back for these types.......................

A word to the wise....I grew up with one.

And I was the one making P4P look bad?????

I recall someone making a look at “the man/WOMAN in the mirror.....”

Boooooo hooooooo!!!!!!!'

Now wouldn't that suck if our self-appointed moderators good hard at themselves?

I am totally done with online websites: they have different names; sites; but it's all the same in the long run: you're stuck with the same backbiting and BS, passive-aggressive crap you started out with......

NUTS, is just plain nuts. Especially when your doc is threatening you with hospitalization because you just feel like you have to keep responding to the constant barrage of 30+ emails in your inbox~curiousity killed the cat(fighting) you have to remind youself.

At least my doc is threatening with medical hospitalization....not psychiatric!

Drama is Out there, if You are Looking

Support pages? How supportive?

I have had almost nothing but nightmarish experiences with these online "support pages," and I almost landed myself in the hospital with the last one....fucking insane that I was going to give up some a new Lazy-Boy recliner men's size that I can sleep in on occassion (not all the time), for a cheap laptop computer so I could post on one of those sites.
P4P is only one example.....there are scads of them out there--DS, Inspire, you name it, it's probably got a title out there...
And several "BFF" self-appointed drama queens/kings of the site....the Borderline Personality Disordered and Histrionic Personality Disordered type (minor in psych nursing) seems to be the ones running rampant on each site...should be running a personality disordered   sites...and each week it's like they publish a list of people you are/are not allowed to be "friends" with.

War after war....and it churns my stomach.....  I get a migraine thinking about it all--such stupid bullshit...and rarely  whew....I'm relieved it's over....NOT gonna start my own site~don't want to mediate the  drama and make sure everyone is under psychiatric care where's appropriate....

I cringe....

My doctor ordered me off, and I ignored him...under threat of medical  hospitalization and my friend confiscating my computer....I gave in and went "404" (aka, "gave in to the drama and deleted my accounnnnnnnnn"

Then the ones who don't follow the rules that should be there but are not:

...they use the sites to promote self-authored books; promote products; like some things a friend recieved in an email from P4P website (why I removed the link at www.physiciansforpatients.com ):

"NOPALEA produced by Trivita. Nopalea is Cactus juice that has amazing anti inflammatory properties, anti oxidents, and powerful molecular restorative properties..."

I get the RSDSA newsletter this is claimed to be in, and no mention.....

Drama and histrionism (aka, histrionics) runs rampant on all of them. God help you should you cross one. Question one. And they have medical histories that would make Jesus Christ Himself cringe....but they do it "with such 'courage, grace, and dignity'...and intolerance, hatred, and impatience towards others."

Kinda backwards, don'tcha think????

I do.

I dumped my membership to the latest one. I don't care if the latest battle is over...for now...the wars rage on.

And those of us with limited health; we are having to pick our battles/wars...is an online website one you want?

I have sworn them off. I am done, finished....before they do me in

I will write here. I am the Queen, but I always allow, and welcome comments from readers....My blog is my support network; those who respond will be my supporters; I have others who aren't posting here, but are still supporters.

And to you, I tip my hat.

Your own trials and suffering, you are supporters. And we all go marching on....together in this bullshit...we have each other, and that's enough for me

God Bless each of you....

What is RSD like---my open letter TO RSD:

My Dearest RSD,

I wish like hell you'd leave me alone.....

I am tired of the burning pain in my leg and both feet.  I am tired, at age 36, of feeling like I've been to hell and back, and back to hell and stayed longer with each "flare."  I am tired of dreading each flare.

I have already grown tired of the migraines and helllish "syndromes" that grow with you; I've done nothing to deserve this.......nothing to put my face on a
"Wanted Poster" that bears either of these likenessesses on them; and the pain

agony, horrible burning pain that goes  with it;

"Foreign oil" is on his mind...not the                    "Spending and re-election" on

dead soldiers that make up his likeness...            his, no room for much else

Where's some lung cancer when you need it?????

Watch him suffocate to death?

Not painful enough!!!!!

RSD....instead of bothering me....why not them????

Not that their minds could handle more than one thing at a time; and election at all is what, or we need to ask ourselves; what any of us were thinking when we voted for him.....

We all screw up--this was a big one!!!

God forgive me, and take away the RSD; and give me some peace, and us all some justice...let them suffer~in the way only RSD can make you suffer!

Leave the rest of us in peace!

Support pages? How supportive?

I have sooner or later had almost nothing but nightmarish experiences with these online "support pages," and I almost landed myself in the hospital with the last one....fucking insane that I was going to give up some a new Lazy-Boy recliner men's size that I can sleep in on occassion (not all the time), for a cheap laptop computer so I could post on one of those sites.

P4P is only one example.....there are scads of them out there--DS, Inspire, you name it, it's probably got a title out there...

And several "BFF" self-appointed drama queens/kings of the site....the Borderline Personality Disordered type seems to be the ones running rampant on each site......and each week it's like they publish a list of people you are/are not allowed to be "friends" with. 

Drama and histrionism runs rampant on all of them.  God help you should you cross one.  Question one.  And they have medical histories that would make Jesus Christ Himself cringe....but they do it "with such 'courage, grace, and dignity'...and intolerance, hatred, and impatience towards others."

Kinda backwards, don'tcha think????

I do.

I dumped my membership to the latest one.

I have sworn them off.

I will write here.  I am the Queen, but I always allow, and welcome comments from readers.....

My Page is Private-[reprint]

The First Amendment of the Constitution of the United States gives us the freedom of speech, so long as that freedom dooes not impinge upon the rights of others--or at least interfere with their ability to come and go, not physically, psychologically, or in any other way.
Now, I realize all our friends from P4P do not hail from the US, nor would be bound by the laws, or our Constitution, but for the sake of discussion, let's say we were all bound by the same customs, laws, and traditions...
Why not start at home with some common courtesy? A few, un-named in this page, unless they should choose to reveal themselves by falling flat on their faces, would make me wonder why I don't travel the 300+ miles from my home for an RSD support group....those would be the few, the powerful, the lloved....the much loved queens of drama themselves who have to be up in everyone else's business; putting up comments~but when realizing how revealing they are (to themselves and of themselves) pull their comments, change them, re-post, post, re-post.
Get on the phone with each other, hammer it out, post it, and then bloody well leave it up.
Because there is a word for what you are doing now:
Let me define it for you:
hypocrisy
hy·poc·ri·sies

1. The practice of professing beliefs, feelings, or virtues that one does not hold or possess; falseness. 2. An act or instance of such falseness.

Thus woud account for the posts, re-posts. If you want to make sure you have it right, call each other first, and then post it.

And have you really nothing better to do at night than to wait and see when I see your nonsensical reaction to my article is, and when I take the high road, you fight to have the last word.

And Venus2, for someone who swore you would leave me alone, you have a lot to say about my articles....why not take the high road, and skip passive-aggressive comments when trying to draw me out about my own son--admittedly, a nice try, about how you are such a hero? And as for the other of the two--I've never said or done anything to you short of what I am about to repeat myself: leave me alone!!!

Debra: I've done nothing at all to you~~>you too, need to leave me the hell alone!!!!

And how either of you would be reading this; the person feeding it to them: you, over all of them, should be ashamed of yourself!!!!!!

But the whole lot of you need to grow beyond grade school, and grow UP. We're here to support each other on RSD; but I hear little of any "RSD talk" going on amongst any of you. Just snapping, backbiting, brownnosing, and behaving like children.

Why can't our self-appointed moderators moderate their own RSD site, and rather hijack a perfectly good site into a state where people are afraid to post an honest word on site, and must take any honest support off-site?

And you call that improving P4P?

If you don't like the articles you see, you have choices there too! To the left of all the articles listed, note:

Newest: of which you can only ignore--to which you seem soley incapable.

Recently Popular....you only make popular by commenting on and viewing...if you don't even like the author--don't look, open, or read...and it evenntually goes away....
I Commented On....You are the ones commenting~and having so very much to say.....
By My Friends....To my knowledge, we are not friends, and after this, nor will we be....I'm sure you will find a way to take the low of the lowest roads and slam me in some way...for writing in my own journal...

How funny is that????

You have turned this into a page where no one knows who to trust, who it's "okay" to be friends with....are you going to start publishing a weekly list now too of members you have decided are amongst yourselves, "unofficially banned," because you don't like what they say; or find some issue of what they say--usually that of semantics, I find it interesting that someone who purportedly cannot stand me, hates my guts--lets be real here, we're all in the big kids sandbox, I know what is said, and I am not stupid: 2 + 2 does not = 7, There are people out there doing your dirty work because you are not woman enough to do it yourself.

So, where do we find this week's list of "approved friends?" I know I'll never be on it, nor do I wish to be; that is one list I would go 404 if I found myself on....

My page is private.

What would you know of what is being written in my journals, or any healing I may or may not find there???

I am so sick of the two-facedness going on here~~someone knows what is going on in a private page and makes it public in an article....when are we going to grow up???

YOU are the reason: I can't speak my mind publicly or privately; it ends up all over no matter what I do. These sites are all the same in the end.

My advice: find a blog; keep a journal, and be the boss of yourself where a few people who are finding nothing else to do with their time than sit and monitor the chatter, and comment sarcastically on it day in and day out.

Get a life--to whomever this applies!!!!!....I am going to enjoy my cats, my local friends, and my time I have left with my parents'.

Life is too short, to fleeting, too ever changing, than to be sitting in front of the computer all day like this; it's insanity....put away your laptop, power-down your computer; or write off-line/on a private blog. You're better off because then you don't get what amounts to not much more than a booger on the butt of humanity reading and commenting on private thoughts anyhow; telling you that you've got no right to free speech.

Until they repeal the 1st Amendment to the Constition in the country where I live, then as long as I'm not shouting fire (even if my leg feels that way) in a crowded uilding, last time I checked, that was okay--even legal and encouraged....

You Stand in Judgement...God Give You That Right?

You know, it seems we have some self-appointed people here who are decideding they have nothing to do with your time rather than stand in pass judgement on the rest of us.

To decide who it's okay for some of us to be "friends" with and who it's not.  To put up very telling comments on articles .....

For those of you who don't like an article, or hate the author...note several words to the upper left of the articles section:

ALL-  Not much can be done about that....save to leave it alone and let the articles you don't like bump to the bottom....
NEWEST- Same here....the new become old only when left alone...
RECENTLY POPULAR-  You make it popular by your snide and sarcastic comments...
I COMMENTED ON-  You show up here by commenting
BY MY FRIENDS-  We are not friends: I offered my friendship, and you have rejected at the  first sign of humanity.....
IN MY COMMUNITIES--well, we clearly don't hang in the same circles, do we?

You blame me for making this community what it is...if it's a look in the trash can, perhaps a look in the mirror is in order.....

This was once upon a time a "support network," but a few, immature, self-appointed mediators have turned it into a place where no one knows who to trust, where no one knows who they are "allowed" to be friends with, and are deccimating their lists because you--you know who you are--have taken it upon yourselves to decide what is P4P and what is not.

People don't want to hang out here anymore~~it's a stressor, not a helper, no longer a support.  You have your cliquish little communities, and perfectly innocent people are falling victim to your nastiness, falling victim to your hideous games.

I used to enjoy P4P messages.  Now I dread them and never know what friends are going to say to me because of something fed to them by 2 nasty old bitties with nothing better to do.

Get a cat~if it would put up with you and not pee on the floor.
Buy a houseplant.
Get that thing called a life unless you've chased everyone away.

I'm grateful to say I have friends beyond this place, despite what you think of me or not...My page is private, yet someone who should have no access seems to know I am finding "healing in my journals."  How would you know unless you have people doing your dirty work you aren't woman enough to do yourself.

And V2, for someone who said they swore off leaving me alone, you have a lot to say about what a write in my own thoughts; and in my articles.  I'd hardly call that leaving me alone.

So I leave YOU--go 404 as they say by choice and at peace with it; I got a nice gift from my brother, and so much from my friends.  Much to look forward to with my family and my doctors and this thing called hope.

But no thanks to you.

I found it inside myself.

Why can't my family accept me?

Why can't my family accept me?

~~August 04, 2011~~

My family feels like the driving force
against my fight against RSD.
They fight every step I take.
They argue with my choice to
take medication and call me an addict.
They hurt me more now that I am sick--
I don't want the "sick role."
I am still the person I was before;
but now I have been blindsided by this crap,
and I want my life back, just as anyone would.
I feel like, 24/7 that someone is experimenting with
pouring acid on human skin and I am the gineua pig.

But God forbid I should take something for pain.
I want to find a better life. That is all.
Plain and simple. To not guzzle half a cup of coffee.
Walk around half the time with earplugs in my ears
because noise drives me nuts. Get my housework done.
Finish the piles and piles of laundry that has been there forever.
I keep promising that I will do it. Just do it?
Not so simple. My stomach was so queasy yesterday,
I was completely useless. I wanna just get my life back.
Be normal again.
Too much to ask now, I guess

I have ME, no not me, M.E., silly

I have ME, no not me, M.E., silly

~~August 08, 2011~~
I have been diagnosed this past year,
by a "officially" and "unofficially"
pointed me towards, when I came in with such
severe fatigue I could not find words to put to it.
Fatigue definitely did not do it "justice."
Exhaustion didn't even do it justice.

Just like freaking nothing does the pain from
CRPS justice, I can't say there's anything
that does this problem justice.
See, when she asked me if I had an "inciting event,"
or an illness I had where I felt that I wasn't the same afterwards
(RSD not enough? But this began before RSD did),
and that was a big huge YES!!!!
In 2003, I was in Houston, visiting my brother, and
I had emergency surgery
(yeah, leave it to me to need surgery on vacation,
but I had been recovering, albeit more painfully than I'd have
expected, but I was in the shower, put my hand on my
lower abdomen above my c-section-type incision
(the "bikini cut," on me???), and for the love of God,
I felt the largest abscess I had ever had...
from my incision way down above
my pubic bone to just below my belly button.
Short version: I spent the next seven weeks
in a Houston hospital, 2 in the ICU;
where I was admitted to within 3 hours of hitting
the doors of the ER, and intubated on a vent.
I was so sick, they told my family to start making plans.
But I proved them wrong.

But I've been totally fagged out ever since,
and, I gave her that as my "inciting event."
So she wrote down a name on a piece of scratch paper
and said, "I didn't give you that, because officially
I have to call it "Chronic Fatigue Syndrome."
I'm like, "You have got to be kidding???
I had neuropsych testing in 2001, and my IQ had tested at 174.
I feel like someone has converted it to
Celcius, and it's not my pain meds, either, darn it!!!"
(btw, 174 converted to Celcius = 79,
rounding up, which would make me borderline retarded)....
So, I am doing stupid crap: forget to check my junk mail box--
where all my friends invites went!!!
So anyhow, I was diagnosed with ME,
or Myalgic Encaphalomyelitis, which is
basically what the pathology of CFS REALLY IS!!!!
Now, it sounds like I am going to die soon, but
if I follow the recommendation of my Canadian doctor
(even though I am a US citizen, he does take
4 people a month from the states for Skype interviews,
and so forth, and I feel like he's saved my life.
Slept this evening from 5:45pm until 10:30,
nothing of it, a normal occurance.

That is a snooze for me. A night of sleep?
That would be going to bed at 7-8pm, and getting up at 11am or noon.
And still not feeling rested.
But it's awesome, just like when the
RSD was finally diagnosed,
even though I still feel like something is missing.
Oh, right. My health. If you see it, let me know--
I've been looking for it for some time now.
But in reality, I have to deal with the flares with a
disease that amounts to left sided heart diastolic failure.
My heart doesn't fill properly on the left side,
where the heart pumps blood, that is supposed
to be freshly oxygenated from the lungs
(yes, on oxygen now--helps tremendously, especially with activity!!!),
and it is, but I don't get enough blood from the lungs to
fill properly and therefore, I only get enough blood pumped to my body to um
....stay up, awake, conscious and functioning....
Then throw in an RSD flare. I can't sleep, but need to, and when I crash, I crash hard. Not uncommon that I won't be seen for a week or two.

I set the record in the clinic for my PCP
for the lowest Vitamin D level at 6.
I had to take D-3 for 8 weeks at 50,000IU twice a week.
Now, I just take D-2 at 2,000IU/day, ever day.
Now, the Vitamin D supplements on the shelf?
Usually, they have 200IU per gelcap.
Missing a "0?"
Freaky, but my doc says that low Vit-D
levels are coming up more and more, and ever lower levels.
But mine she said, was an eye-opener.
Explains why they drew it four times, doesn't it?

TIRED OF BEING EXHAUSTED

TIRED OF BEING EXHAUSTED

~~August 08, 2011~~

I am so dang tired....all the time.

I have RSD in my body, and the pain?

I have heard some call it "Hot poker.....burning pain......." It's those and more than that the best solution pain-wise has me a frustrated.......I am finally have a pain program that helps....

So what's the problem??? I feel like a freaking zombie!!!!

I fall asleep while composing an email, but who hasn't, right???

Yeah, problem is I stay asleep for about 3 hours or more!!! I wake up in pain.

Tonight, I have decided to put up with the pain so I can function.....a little.

Why?

I also have ME, a disorder of cardiac output, neurological impairment, and immunological impairmennt. I meet the "PENE Criteria." It means "Post Exertional Neuroimmune Exhaution."

It means I use oxygen at least 50% of the waking hours already.

So bring on an RSD flare---

Come on, dare ya!

Right now, it's a Category 3....but the Jenna McK Household Weather Service Predicits the Storm to make Landfall

Right now, it's a Category 3....but the Jenna McK Household Weather Service Predicits the Storm to make Landfall

~~August 09, 2011~~

Hahaha, sounds funny, huh?

I guess I have always made the serious into funny by cutting up and cracking jokes, but this isn't that funny. Every time a stoorm hits Landfall, it's not that freaking funny. Not to me, and not with a heart condition now.

I am sick and tired of "Can you rate your pain on a scale of 1-10?" Step a little closer next time you ask me that so I can rip out your throat with my bare teeth...."

Clearly, I am only kidding.....but God, show me that stupid 1--10 scale with the happy and frowney faces. You will soon be frowning permanenty. Here;s my 1-100 scale--I think you all know what the faces look like; I am talking definition:

1 I'm cruisin'--wth does pain mean?
2 Couple o' Tylenol
3 Just a little o' pain--but the BTP is an option
4 Oh, heck, it hurts, dang it--watchin' the clock!!!!
5 Crap, it hurts--but I'll amputate before I go to an ER: those pllaces are death-traps, I'll pass on the Venipuncture!
6 Back off!!!
7 I said, friggin BACK OFF!!! I am feeling slightly antisocialllll But only slightly!!!
8 Touch me, and I'll shoot!!! I am feeling VERY antisocial, so back off!!!!
9 Alright, my head hurts, everything hurts!!!!!! I WILL shoot--this gun is (not really) loaded
10 Make one more move & your family will be planning a funeral!!!

Ok, so I said, I am a joke cracker when I make the range where gynormous pain is invoved. And stress.

My M.E. is really kicking ars, and I love the cats, and sometimes I don't know if they are driving me nuts or cuddling and being sweet. Or telling me something.

One of them is a service cat though, and I have to listen to him: he senses before one of my category 5's hits landfall and usually before I do. So I generally try and relax.

Today, I am grateful for: My PCP being willing to receive and hear information I have, and listen to it; and to not tell me to treat left-sided diastolic heart failure with Cognitive Behavioral Therapy, and Guided Exercise therapy and listen to the doctor who diagnosed my ME in Canada.

Today, I ask anyone who reads this to pray for my friend Candy, a co-RSD'r, and who has it full-body, "full meal deal" who is under a huge amount of stress because her adult son Brandon is very sick, and in terrible pain. Please pray for them both! Thank you!

Peace,
J

MORE ON MY NEUROLOGY APPOINTMENT!!!

MORE ON MY NEUROLOGY APPOINTMENT!!!

~~August 12, 2011~~

OMG, I saw the NEUROLOGIST OF ALL NEUROLOGISTS, the absolute king, as far as I am concerned!!!!!!!!!!!

God obviously broke the mold when he created this guy; he is the absolute best!!! So, he starts asking the usual questions: what was the trigger? I told him I'd had hip surgery, and then he said he had a question, as there was something he saw in the notes from my PCP he felt was "unusual." Okay, what's that? I asked having a very good idea exactly what it was. My anxiety was very high by then. He said that the PCP had included everything, all the tests she had run, and a mention of a neuro consult, and even the date; even her name, however, her notes were missing, and there was even notes from a visit with the PCP AFTER the date of the consult that states that I was still in a great deal of pain, and the PCP had then sent the notes, and had just not included the neuro's stuff. He asked how that had gone.

I said it was a total bust, that she'd treated me like a was a complete moron,with a Celcius IQ, and even after I mentioned I had a Master'sin Nursing, and she she had, felt, put me through HELLwith her exam. That I had thrown up on my way out, and if he looked at my PCP's record, she had called in phenergan that afternoon. He asked what sort of exam she'd done, and I had gotten so sick. I said she'd done the reflexes on my knee, ankle, and taken that pinwheel thing, and run it up and down my leg, stuck a NEEDLE(similar to a sewing needle?????) and then been about as rude, patrontizing and disrespectful and downright horrid, IMHO, I told him. I told him that she had said the RSD was due to my "psychological disorder," thus again speaking to me as if I were stupid,, and that neurogenic PAIN is very common in psychological disorders," and at that point I said to him, the "consult" was over, when I reached into my bag, and produced a smaller, pocket copy of the 4th Edition of the Diagnostic and Statistical Manual of Mental Disorders and asked her where I would find RSD." He laughed and asked how she'd responded. I said in the long run, I might well have thrown grease on the fire.

So, the other neurologist, I told him, had then gone on in her notes and said she felt she was “not surewhy I had 'claimed' sooo much pain,but disagreed with her predecessors (My PCP who's PhD is in neurobiology, and the surgeon) that it was RSD/CRPS, and said she wasn't

He looked shocked. "She put you through the fullexam?" he asked me

I nodded, just about in tears. He said he would try, but my comfortlevel would dictate how much of an exam would be done. So, he did okay on the left side, since the RSD isn't really affecting that side. He started to REACH for my right leg, and reflexively pulled away, and as he said, "already looked kinda green around the gills." He immediately backed off.

Not gonna BELIEVE this on what he said next: "Oh, yeah, not RSD? Uh, well I disagree, it is RSD, and I find it unconscionable that with your current level of pain, she even put you through a full exam.

He admitted he gets people in there daily who are trying to fake it, he told me, but you are clearly in way, waytoo much pain to even attemptfor me to even do a full exam, and that he felt there was NO WAY he could even get in a more complete exam until my PAIN was under better control, and that absolutely not a chancewas I faking it, or that it was 'psychologically mediated,' as I said the previous neurologist had suggested.

So anyhow, since most of the tim I have been crashed out since, oh, my Lord, like 4pm--but I slept from noon til then. I'm still in screaming pain, but God, it's just that FINALLY, someone is on my side; and wrote inBIG RED LETTERS: THIS PATIENT HAS RSDand, boy does it feel good, dang it--not to have RSD, but the friggin' validation, for the love of Mike!!! (or whoever.)

But anyhow, a friend made me a gorgeous fleece blanket which FINALLY does not hurt to have on my lap, so I don't freeze, and even though sleep is hard, I got LOTS of it today!!!! Whoa!!! But I might commission my friend to make one more blanket to go under me, so that I will be warm; seeing as how we are having 55-60 degree days in fr

But the neurologist said HE may have to do my pain control for a whole, which is okay, because HE LISTENS, but Idk why he can't just work with my current guy; but this neuro specializes in RSD and I'm the first RSD patient the PM doc has had...idk, we'll wait and see. I can go to 2 capsules in a week of the Zonegran; making it THREE anti-seizure medicines. Better than more narcotics, IMHO. I don't like feeling like a dope.

But lastly, I finally am not feeling embarrassed with this doctor, to admit that the RSD, how hard it is to take a freaking shower!!! I am relatively new to “Medicare guidelines” on home health, but I feel like I could use the help to take a shower, as humiliating as it has previously been to admit; I NEEDthe help, as showers are now a 3+ hour nauseatingly painful affair, and I am comfortable enough with him to ask for the help.

As for being “home bound?” How many need to ask that question?

But oh, I am SOOO RELIEVED!!! It couldn't have gone any better!!! Big load off!!!!

AM I BEING A WUSS, OR IS IT REASONABLE?

AM I BEING A WUSS, OR IS IT REASONABLE?

~~August 12, 2011~~
OK, I need to get some input.

I don't want to "mis-use" services, or anything, but I swear, showers are something I used to look forward to--long.....hot, warmmmm...ohhhhh so relaxing......

I have always loved the shower--a long hot shower, get my brain re-set, and just if anything, re-set myself, get relaxed, and get set for the day with a clear head....or a warm bath to relax at the end of the day!!!

BOTH HAVE BECOME A SEVERAL HOUR LONG, EXCRUCIATINGLY PAINFUL ORDEAL.
HOT WATER = Feels as if someone is lighting me on fire and then pouring acid on me when they are through, and then writing on me with hot pokers when they are done with that--the hot pokers is the hot water.

WARM/TEPID WATER = Feels "only" as if someone is pouring boiling water on me;


All of it is like someone has turned up the temperature-every degree they turn the water, it hurts one bit more--as if it were possible.

I just don't want to waste resources that would be used well for someone else, who would be dying, who is without help...

But this is soooo embarrassing to admit, but I have gone 7-8 days, except when it was hot out and I sweat bad all over!!!! There is that element, like my mother's voice, whispering in my ear, "Stop being so damned lazy, you little b****, you aren't even in pain."

The last part, I am secure in knowing that she is full of crap. For one-I am NOT lazy, and number two, I AM in a TON of PAIN!!!!

But what my mother has put me through is ghastly. She has made my life hell, and done it well for so long: she has an official diagnosis of:

Borderline Personality Disorder with severe Narcissistic Personality Traits, and it was hell growing up under her roof. What did I have to do?


In order to get through to myself that I am in pain, that my pain is okay; I had to get her as distant from me as possible. I take her calls maybe once a week, maybe every two weeks....I SEE her about every two months.


And it makes her crazy....she is constantly striking out by calling me a "druggie;" and making accusations I am abusing drugs, and nothing but a junkie--she tries to strike where it really hurts if I do something to "wrong" her, or make her look anything less than what she is: which would be human. I just figure, "whatever," and I let her have the mic and she can waste her breath as much as she likes...which is a lot, apparently.


But screw her. I know my pain is real; God knows it, and my doctors know it. Anything else??? I could care less if she doesn't believe me. A friend asked if that doc reminded me of my mother, and I said the only thing they have in common is they are both stupid, cruel, nasty, and sadistic (not in a sexual fashion); but once I took her out of my life on an emotional level it took the teeth of being in pain-->out of being in pain. No more hiding it, and if she was coming by on a "bad" day pain-wise, make up and excuse, and no mom coming over.


Sounds awful? First, Google "Borderline personality disorder." Then, second, Google, "Narcissistic Personality Disorder."


Then spend sixteen years growing up with that. Add your adult life after being diagnosed with bipolar. Oh, a mental disorder!!! Sad as it is to say, she was probably "gleeful" as would be said. Why? Even now, being declared "in full remission," she is not, and she never will be, and you know, it's fine with me; but she still sees the disorder as ammo with which to rub my nose in. To hell with her.


But puts me in the position of where I am in enough pain, bathing iis hard. I really am having a hard time with it.

Is it "old tapes" that makes me embarrassed??? Is it "old tapes" that makes me feel like "gee am I really in need of this?"

But I guess I will let the neurologist be the judge of that?

Wow, This One REALLY ate me!!!!

Wow, This One REALLY ate me!!!!

August 14, 2011

Oh, wow, did this one eat at me!!!! I mean, it just goes to show the ignorance about RSD, and yet this person claims to be "informed.:" It's just eating at me, and I know I can't let stuff bre, or it will = more pain, and that is exactly what happened...and the level of pain I have just from a comment from "the world of STUPID" is what shows exactly how foolish the uninformed can be.
I've been in the worst flare up for like two weeks now. That neuro is she truly is, and I guess that's what got to me, which I know I can't let happen!!! suck a quack, even i know RSD dosn't dissapear over night and i know that bi polar causes the neurotransmiters to go all over the place. You would think she would know that too with haveing Dr. in front of her name ...but sadly nope!

"Sorry I haven't gotten back to you...LOL..been in like the worst flare EVER for like 2 weeks. Its seems like RSD is the new fibro. People with fibro are undermedicated and its still being pressed as a phycological disorder. LAME!..i wish these docs would wake up and smell the coffee..."
And what? Give her more of the methadone she takes for this fibro? I know several people who really have fibro and not ONE of them takes methadone for it, Yeah, she doesn't get sleep? I can explain why! Stop taking all the damned meds and let mother nature to her job.

And honey, if I could trade RSD for anything I would! You think I enjoy waking up to start my day at 0230am??? Ummmmmm...hmmmmm, let me think on that.....

NO, you ignoramus!!!!

I mean, really, two SEPARATE disorders,, and if she thinks RSD is "In Vogue"" or something, or she is pissed off that after months of struggling to get diagnosed with RSD (the best she could come up with that someone could actually observe was that the bloody b**** claimed, and pulled off with some major Academy Award style acting, I am sure, was that "Light makes it so much worse...and OMG, sounds send me....

Alright, I better stop here on this chick, because I am thinking some seriously un-Christian stuff here! And I know it is the night of hellish pain I have had!!! If she would combine the exhaustion I do feel from having left-sided heart failure plus the RSD pain then she would know what it's like to be so exhausted you literally cannot think, move, feel, or frigging bloody well fight to just feel like crap. Her inability to understand comes probably from the fact that everyone has always handed everything to her.

And that really is kind of sad. Because when a person never learns independence, sick or not--whatever type of sick, they learn to live off the work of others, or they never learn to do for themselves..

And it doesn't teach them to cope well with pain either. Because then they learn that "I can take a pill and it will get all better" They don't learn to live on faith: the belief in something you can't a;ways see/ They instead learn instant gratification. Whether it's because someome gave them what they wanted to "shut them up." Or whatever other reason it was. The lack of the skill of independence on their part never teaches them the test of true faith. When you're not sure you're always going to be able to have what you need or want--for yourself or your children.

But it's like a wise man once said: Give a man a fish, and you will feed him for a day. Teach a man to fish, and you'll feed him for a lifetime.

The comment that "RSD is like the new fibro" shows that this woman is really not one to be angry with; but rather one to be pitied. She's got no clue to the real suffering of this horrible disease (as I write this in bits and pieces through the nights, when god (and at least right now, the pharmeceutical idustry, but in my case: I have sleeping medicine I can take nightly that outside the hospital, is like a general. But I get none of that healing REM sleep, so I make the choicce not to take it, because my body also needs to learn to sleep--pain or no.

And this woman does have a diagnosis of fibro, and she went on to whine (sorry, I call it as I see it!) about how those with fibro are "so undermedicated" So she is dependent on the medications to fix her problems. Never think of (except in RSD) using an ice pack, a hot pack, a soak in Epsom salts......just take a pill and feel better.....and to simply expect a simple solution.

And since a person learns a simple solution: take a pill, for example, then they don't learn belief in Christ, to lean on him, believe in Him, and to first pray to him when searching for an answer.

My Unwelcome Visitor

My Unwelcome Visitor

August 15, 2011
You are my unwelcome visitor,
Like a party guest who won't leave
Only you are so much worse
You come in and in one stroke,
Cause so much suffering, so much agony,
So much heartache, so much damage...
Living with you every day is a living hell.

No one wants you around,
The life I do have you are najubgy miserable.
A torturous, living, nightmarish living hell.

You stalk your victim like a wolf stalks its prey.
But at least the prey knows where to hide.
You are with me every minute
Of every hour
Of every day.
Now diagnosed with RSD,
I know you're not going away...

Going to hell is where you belong,
I want you to leave me alone dammit!
I deserve a LIFE!!!
You feed on people,
their negative feelings,
and that is how you survive,
how you grow and how you thrive!

You are worse than a parasite,
but smaller than a tick.
No one can see you,
Until you have deccimated their lives......
You are the perpetual thief,
You take everything away from someone,
Life, freedom, and a sense of peace...
You have solen my selse of well-being,
My ability to even so much
as get a peaceful slumber
It feels like I am forever your prisoner
Your servant and your slave.

I used to love and enjoy my life.
I was happy, satisfied, productive, and free.
You have stolen it all from me.

And with "malice and forethoughought"
as the CJS says
Like the murderer you are!
Oh, don't you remember Eric?
The tears his mother still weeps?
The memories of him we all have.
Eric before the pain and RSD.
Eric after the pain and RSD.
A different man. And different FATHER.
You crush a person's sense of hope
You steal their spirit. Their zest for life.
Their desire to live, and hope that something will help..
Eric drove away his wife; she divorced him;
begged him to come and see his girls
He refused, didn't want them to "see him that way."
He drove away his friends,
leaving him with only one,
who's help he also refused.

I could let myself fall into your deadly grasp.
Think that if I had to stay in that life
for the next 20 year, 40 years,
However long I might have, that,
Well, I might well put a bullet in my brain now
Because what you have stolen is hope.

But you can't have mine.
If I have to close my eyes and talk out loud to Him
I will, I will not, however, let you steal the ONE thing
that has gotten me through the medical HELL I have
been through...the MRSA, the sepsis from it,
The bowel resection from gangrenous bowel,
the poison that floated through my blood both times.
Both times I lay in the ICU, my temperature higher
than I care to think about.
and the damage it did too my body.

But I survived BOTH TIMES.

And although it's been longer than I've showered
than I care to think about, I won't let this
defeat me, I won't let let this beat me.
Though it feels like my
skin is being burned off
as soon as water of
ANY temperature (cold, tepid, or hot),
I will grit my teeth and get through it.

Because I do not allow in
an Unwelcome visitor.

Go away, get out,
you are not welcome here.

I have two huge Rottweilers
that can make it to the fence
in under 4 seconds......the last dummy who tried to beat them
got 55 stitches.

How fast can YOU run???

My Pain Doc~HAPPY 2 C me "kinda loaded" ??????????

My Pain Doc~HAPPY 2 C me "kinda loaded" ??????????

~~August 16, 2011~~

Saw my pain doc today,
and OMG, I was talking out my a**
because I was suddenly feeling like I was just looped,
and just basically f'd up, and it's hilarious because
all this time and effort; as long as I wasn't sitting on his sofa barfing in his wastebasket like I did that first visit; yes folks, I was in so much pain--
my response to seve pain is to vomit.

I had walked into his office that first day,
and as he discussed my insurance, or lack thereof,
I had began retching, and then
outright vomiting in his wastebasket.
But with the tapes of my mother playing in my head,
after having slept most of the day really,
of anytime my voice got thick from
the pain medication, guess what???
He was happy to hear it that way,
that it was meaning that I was taking it as directed!!!! 

That maybe it was gettinng to having some side effects,
but given that I have RSD, and as he said,
"You have to whack it with a heavy bat,"
at least I wasn't abusing it--or I would be unconsciouus--
but that it looked like I was heading more towards being
"actually at least some sort of comfortable
I could hear my mom saying faintly,
"druggie, druggie, druggie," 
Yeah, well she was the one who stole
pain medication from her 16 and 17-year old daughter
when her own doctor rightfully cut her off.
Remembering that she is the one with the proboblem,
not me, and that ya know, she is the one who guilted
me into not taking my meds as directed for so long.
I truly hope she never knows the pain of RSD with me anyhow,
she acts like I am not allowed comfort--well, honey,
I got news for you: I not only have the right to it,
I have all along, and you have never had
the right to "guilt me out of it."

So here we are!

Crashed and Burned

 

Crashed and Burned

~~August 17, 2011~~~~

I saw my pain doc yesterday, and like I said, and though I did not bring Bean (the black/white kitty), as I sometimes do, my sleep factor was a big fat ZERO the night before, and though I was able to sort my articles on ME to have ready for him--the short ones, and only like one or two.

Guess those docs ya gotta keep it simple...How many years of training and they can't sit down and read an article written by a friggin collegue???? Call me the freaking idiot here, or is it just what I am wondering???

But anyhow, many ask what is ME (myalgic encaphalomyelitis)?????? But the ones that do, try to send me off to CBT!!!!

Now, the idea that CBT helps CFS is built on the premise that I am an overtired woman who doesn't know how to manage her emotions, and is suffering from the CFS because I am, essentially, driving myself crazy: and that is what is making me so darned tired.

Cognitive-Behavioral Therapy (CBT) is an empirically supported treatment that focuses on patterns of thinking that are maladaptive and the beliefs that underlie such thinking. In addition, depressed patients learn how to restructure negative thought patterns in order to interpret their environment in a less biased way. Simplistically put, CBT is learning how to change how we think about things, then process them, and in such, it will change how we feell--eg, we become less depressed/moody, etc, and I have seen a large number of people respond to CBT, myself among them, and actually when I recently was looking for a therapist, I searched--asking each one, "Do you do short-term, goal-oriented, focused therapy, subscribing to the CBT model of therapy?"

In most cases, I got a reply that they either subscribed to a group-oriented approach (I disagree with for what I think are obvious reasons (oh, say if they've been traumatized???), subscribing to the DBT model, which I do not agree with for reasons I don't wish to go into right now.

But suffice to say, I've never at any point been against CBT. BUT how in God's name is that going to solve what is being proven more and more as being a problem of left-sided diastolic heart failure. To get to an understanding of what this means (other than I could mainline caffeine and it wouldn't help!) is that SYSTOLIC is when the heart contracts and is pushing blood out, so the ventricles are empty, and DIASTOLIC is when the ventricles relax and are filling.

ME is a disorder of diastolic heart failure, and you are going to meet certain criteria, but at any rate, if your ventricles can't fill with enough blood to pump out to the vital organs, which include the brain.

So, they are initially going to look for the "PENE" criteria....
P ost
E xertional
N euroimmune
E xhaustion

Severity:

Mild: Approximately 50% reduction in pre-illness function

Moderate: Mostly housebound

Severe: Mostly bedbound

Very Severe: Bed-bound and dependent on help for physical functions.

Now, I reasoned to my doctor, if I am having a problem of diastolic heart function, then what the heck is CBT going to do in order to improve that, and being in all favor of that form of therapy, why is my exhaustion , or ME, being told to go to psychotherapy when it's a PHYSIOLOGICAL PROBLEM.

She told me that "most current information she had on CFS..." was that the treatment of choice was CBT. I asked her, as politely and patiently as possible, how in the heck is CBT going to prevent me from "Crashing and burning?"

Naturally, she asked what I meant.

I told her that today was Friday, right? She said, "Yes, thank God."

I gave her that one. I said that the previous THURSDAY, a friend had come over to take me to Winco and help me out with my grocery shopping. I need help because I cannot be counted upon to remember what to get, to make the most of the money I have, and I also just plain need the dang physical assistance in carrying the groceries to the car, and reaching stuff, and making sure I don't stand up too fast and pass out; and in lifting things; heck, I have days where a large can of soup is a lot!!!

We started with a hearty lunch at, well hell if I can remember, but somewhere nice, and it was expensive, but heavenly and lots of leftovers! That, I said, I think had taken all of 45 minutes.

We'll give it 60. Just for kicks and giggles.

Winco--that was 2-3 hours; so we'll say that was 3 hours.

Total thus far = 4 hours. Now, I used the handicapped spaces, and an electric cart at the store. And had a hearty meal...and had my waterbottle with me.

And I am in a body where the heart doesn't pump enough blood to the most vital organ of all:

The brain!

So, here's my body, and my oxygen-starved brain, as my heart isn't, as hard as it may try, going to tolerate this kind of trip (yes, I had shortened this up--I'd left off at the trip to Winco: the rest of this is discussion)

Ok, doctor back in the room.

I said, that after maybe 3 hours of shopping, and lunch first, we went next door to Costco, and we were to get a chicken, and then the usual: cat litter, aspirin, so on, and the most fun:

Browsing for stuff we can't afford!!!!!!! Yeah, baby!!!!!

But, I am standing in front of the chicken area, and all of a sudden-WHAMO!!!!!!

Ok, none of us are total morons--we all know pain was in the deal already, and I had zero, nada, nicht, in the way of any sort of pain meds. I actually DID pop open the aspirin and swallowed FOUR of them....DRY.

I watch my doctor cringe and waited for: The "do you know what that does to your liver/kidney, friggin' heck, your nasal cavity, speech?" It did not come!! Wow, what's up here?

But seriously, the pain hit--HARD...bowling ball, knocked over all 10 pins hard, grand-slam home-run, hard. My leg was starting to turn 10 shades of blue/purple when I looked under my sweatpants...it was gonna be uuuugggggllllyyyy!!!!

Then dizzy, lightheaded, and everything had a purple outline, and I was feeling short of breath--few (not sure how many really) hits on the Ventolin, which THANK GOD I had in my pocket, shockingly enough...

But when I felt like my heart was beating too fast, and like the "Hey, lady--hahahaha, ya overdid it, so I am gonna explodoe now, and REALLY F*** up your life!!!!" I'm sure I was not looking good at this point, and I was literally pouring with so much sweat, I could SMELL it, and oh, nasty, but I was so damned exhausted I didn't care.

I felt like I was going implode and explode all at the same time, but I just was not sure if it would happen before or after my organs, one at a time just, well, came apart. My brain was feeling fuzzy--probably screaming for ozygen by then: would have been wise to bring it along, you think? Was I thinking? No.

All I could think: GET OUT!!!!! I had to get out, and I had to sit down...I fumbled for my cell phone, and my hands shaking, PRAYED she would answer, Please pick up, but the words would not come out...my leg was on fire...my body coming apart like jello....please pick up....I dialed her number, my best friend locally, Kelly, and at that time, I did not know her name...please pick up....dialed the numbers individually, my hands shaking so bad...pick up dammit...pick up dammit.

S***!!! I was greeted by her voicemail, but suddenly remembered our code if there was an emergency to cal the other, it was to first page, and then text, simply "911." Three simple numbers, and I was suddenly shocked, proud, and amazed I remembered! I shakingly dialed in the 9-1--1 and then # to send it through her voicemail. Then, hanging up, I went into my text messaging section, and texted her, "9-1-1--NOW" to add the emphasis, so she would know...I was starting to forget where I was, Jesus!

My phone rang. Rescue. Six simple words: "Get me...out of...here...NOW!!!" She heard the collapse in my voice...dammit, I could not figure how to hook up with her--where to meet when I didn't know where I was...

"Look to your left--that's the arm you broke last year, you can't bend the pinky well..." she threw in the clue. I looked over and saw camping gear. "Camping gear. I was determined to not end up on the floor. Then someone would be calling the REAL 911, and oh, not a chance--the last place ANY person suffering RSD wants to end up is the ER.

She found me, and we left the baskets, and got me home...some kids--adolescents, were playing out front. She got me into my apartment, paid the kids to carry the food upstairs.

She got me into the bathroom, and eventually finally--into bed. I use oxygen periodically at night, and she put my oxygen on me, put my medi-sets next to the bed, and programmed my phone to sound off obnoxiously and wake me to take the orals...and the next day, and had me set for the next couple days....

See, doctor, this happens all the time.

"How long did you sleep?" she asked.

"Which day? I asked her

"Any of them?"

"On the average," I told her, "Day one, which would be Thursday, eighteen hours--straight. Day two, seventeen hours, Through the weekend, a 48-hour weekend, I woke up long enough to take my meds, change my patches, and that's it....Period. Slept the rest of it. Monday and Tuesday, I slept 20 hours/day..............after that, I couldn't sleep Wednesday and Thursday."

She looked shocked.

"So when I have a collapse like that.....tell me something: how in God's name is CBT going to HELP? Make me convinve myself that my brain got enough oxgen for that four straight hours? No disrespect to the info you have, but the info I have came out the day after my collapse. What about the info you found?"

Then I said, "The other problem is when I have a collapse, wanna know what happens? I get behind on my pain meds! Then what? I get into a pain crisis!! Is CBT going to help that? If so, how?"

How?

FREAKIN' OUT!!! WENCH ISN'T CALLIN' BACK!!!

~Written August 19, 2011~

I have a lease that ENDS the last day of this month after which my manager has continuously reminded me that my lease then goes MONTH-TO-MONTH, and that INCREASES MY RENT BY $250, AND of course, I have been fighting to call my housing "case manager" as they are called, and the b**** has not been calling me back.

I AM PROBABLY GONNA HAVE TO DO THIS ONNE "JENNA STYLE...."

What that entails is calling ONE MINUTE after they open and of course I will get her voicemail.

Then I have a total "PANIC ATTACK" as I call it on those nice dumb ignoramuses who answer the phone and say, "LOOK, I HAVE ELEVEN DAYS to figure this out-I of course am the one who pays that $250," and then I raise my voice an octave, "and I am freaking out here, I have been sick as hell, I have been in really bad severe pain....What I would appreciate is if while I wait here on the phone" voice will goo up another octave into what someone goes and finds my CM and GETS her on the phone"

Because if they DON'T do it my way, I will unleash my shrink's temper on them. And that would be a verrrry baaaad thing.

My temper in form of a panic attack is bad, His flat out temper is worse. Especially when he's hitting a FRIDAY. Better prep him with an email.

HAHAHAHA!

Actually, the panic attack would be real.

I ain't got an extra $250 laying around cuz some stupid b**** can't return my phone call!!!!