Oh, how nice HOME HEALTH would be

Well, excuse my language and for bringing the laptop in the bedroom, but my videocamera makes huge files that can't be uploaded.

My commentary is directly related to my pain level.  Oh, I understand I am now live on You Tube; with many other RSD sufferers...you'll love the choice of language, but if you already felt like your foot was on fire.....but let's see if I can find it!!!


Crap, it's disappeared-odd.

But the swearing helped

Right in the bathroom...with the damned webcam; this is how well I am managing...right now.

Course any "pain doctors" will be "oh, playing catch up....so hectic from last week's awful weather [with no further evidence of said inclement weather]

ME AND MY DAMNED FAMILY--WHEN DO I EVER LEARN????

What does long-term, severe, and physical pain do to you psychologically?  Physically?


A:  It royally fucks you up!!!  And it is bloody fucking exhausting....But here's today's video commentary because I am too dang tired to give it to you in type-written form.

I see the pain psychologist (oh, yay! But will be required to at some point,so I figured "Beat them (severely) to the punch."

What does being a member of my family do to you psychologically?  In any way?

A:  It fucks you up royally.  Scars you for life, screws you up badly.  Makes you want to go postal.  Makes you hate them more than they have driven you into having yourself.

I don't hate them.  I pity them.  They have nothing better to do than talk about me?  Fuck, get a damned fucking life!!!!

THREE FUCKING SOLID (ALMOST) OF COPPING OUT!!!!

 Yeah, fucking foot is looking good!!!!

I am damned exhausted and I have barely done anything at all...

Families that help are a luxury I don't have, can't afford, and never will....

This is imperfection to them.
They can't handle getting their hands "dirty."


My father won't come into my home because it's dirty-hasn't been vacuumed, picked up?


Guess he won't be round for a while.  I am bedbound. 
So unless he wants to fucking come up here on his own and:

• straighten the kitchen
• finish the dishes (there are gloves)
• vaccuum
• take out the trash

That's all that needs to be done.....Too much to ask?

APPARENTLY SO!!!!!!!

A REAL LOOK AT RSD/CRPS

[DUE TO TECHNICAL DIFFICULTIES; MY VIDEO WOULDN'T POST; NEXT BEST THING :-(   ]

I don't know her personally--but I understand her

PART II

PART III

MY NOTES

Hey, go ahead, go to the RSDSA and other fine organizations.  Even doctor that treat it what they neglect to tell you is those "smashing success stories, seem to be rare.

Usually somewhere between here and there.  But we do not, have, and I've seen most cases fall somewhere in the middle.  I hope you'll take the time, if not at work--at home even, to watch

MORE PHOTOS:

 Big time swelling in the right foot; and I a going mad; you feel like you are looney because you say at the time of making the appointent, your foot is scrawny--you show up and it's either normal, redness is gone, and you feel like a freaking moron.  You start to wonder wbere you're damned brain went!!!'

How do you explain to the nice new nerdy medical student what RSD is?  They reach for a Blackberry???

How do you, most of all, explain that shit to your family when they barely give a shit, what RSD is?

RIGHT FOOT SPASM

 Like the rest of this God-forsaken country they hear "Severe form of chronic pain," and equate you with being a freaking drug addict--you tell the provider you have RSD, and unless you show them photos, videos, and provided you maybe get a referral--to go to some wonky pain clinic with wild assed "pain doctor:" who claims to specialize in RSD.


12 doctors are registered with the RSDSA, and many are no better than their counterparts who claim expertise.

Truth be told, I don't think anyone understands it save the the souls who suffer from this shitty disorder.  And any doctor who truly has ANY answers that people who suffer from this are so mother fucking desperate for.  You look at that heel, ok?


Then imagine you have had your leg scalded with hot water, then lit on fire.  And none of the following are available:

• water to douse the flames
• even a fire extinguisher
• and it's illegal for you to even yell "Fire" because no one else can see the damned flames.
• Now add the "sore" to it, that when you stand up feels like a beaver has started with your ankle and is gnawing at your foot, for no damned good reason,
• Then try and clean the house, take the trash out (when going to the bathroom produces breathtaking levels of pain that you want to vomit or just spend 25-cents.  But you don't ever consider that 25-cents a viable option because your FRIENDS give a damn, even if your family isn't worth shit.  I have an able-bodied step-sister, 44 years old, who moved back home with my STEP mother and father, because "she needs some place to go because she broke up with her boyfriend."
• And I am 6 months away from being homeless because my housing voucher and I lucked out with the four years where I've been staying.  No other family members I care to have go through my things and screw with my head,,,,

Click on this link and you will see the man who is the REASON I more FEAR the ER.

• Not to mention they wouldn't know what to do with an RSD patient if even the protocol whacked them over the head, and the doctor that made this mess manhandled me to begin with.  No sedation with an already painful, swollen, and very hot leg.  I had to swallow my vomit.

http://www.icrimewatch.net/offenderdetails.php?OfndrID=1292056&AgencyID=54487 (I am patient # 2, and what it doesbn;t

People get desperate that are on disability like myself, and the few that still have able to get a credit card, or things like assistance from family members, they will fly halfway across the freaking world to chase a treatments that are not proven to work-or even proven to be haphazard and dangerous at best....One woman makes like $150 less than I do (and I get $903 after this year's generous 1.02% COLI raise.

She spends her whole disability check on compounded meds and credit card payments.  At less than $10,000 per year, she owes over $22K.  That is lunacy.

That is what the severe constant pain of RSD will do to some.  Others--check out the Catalyst video, or my own.  I'll try anything from rubs, but I want my aquatic therapy back dammit!!!

I was friggin' happy in the pool, as exhausting as it was!!!










What many fail to understand, it's not all meds!!!!  They're important, but....

Talk about producing cramps!!!

Total relaxation!!! I grew up in the pools-I fell asleep
doing this exercise......they had to wake me UP!!!
Never happens these

This is on an ugly day, and both legs hurt...one from
lack of blood flow the other from swelling and sensitivity.
I don't normally swell this dramatically

Looks easy--arthritic knees + RSD = bit more of a challenge

One of my Video

This is one of my videos

I honestly feel that my government has failed the disabled and.....My father served his country.  In failing me not just Olympia but 1600 Pennyslvania Ave and the rotten presidency we have, and isn't looking better, and they failed my dad who spent a career serving his country?  As a "military brat" we took care of our own.  That has fallen by the wayside for 3 letters

C-cover

Y-YOUR (theirs)

A-ass

Cuz I'm in it for NUMBER ONE, aka, ME.

WALK IN MY SHOES--ANY OF YOU.  WARNING:

I can't get the right one on.

Still no home health.

This sound like they have done little more.  Don't get me started on the medical system.

obama, gregoire, and no one in Olympia or Washington DC gives a shit about the diabled-they give them such tiny amounts of money to survive on and ASSUME someone else-like their family will pick up the lack the've left off.

Otherwise known as total failure.

A Seattleite who "Goes out in the SNOW!!!:

MY HERO TODAY:

Meet an actual "Seattleite" who goes out in the snow (OMG, really???  Not in this weather!!)

My dad came to my rescue!  No gauze, one or two telfa pads, no decent food in months; and he is not only taking care of filing my taxes for 2010 that I thought said $900 for some consulting work, but it didn't.  So, he's taking care of that.  He saw me--looking damned fucking pitiful, watched my video; I played others for him, and he realized--maybe a visual thing--that though he can't always be here, he can help out maybe half a day so my home isn't such a hovel.

• 2 boxes of gauze rolls
• 2 boxes of telfa
• Fast food--get this: he asked what kinds of things don't make me sick before just bringing it.
• Didn't judge my pharmacopea of meds for now
• deposited my check.....
• provided a shoulder to cry on when I couldn't get up and help.

MY DAD IS MY HERO:

SEMPER PARATUS = ALWAYS READY

We weren't rightly ready for RSD, I guess, or the bells and whistles it comes with.  But finally when he said he would help me get back up to where I need to be--to get back in the pool, that being I guess my long term goal, he showed up today.  And it hasn't happened in a long fucking time; and it felt good.

He straightened up the kitchen; and the tasks in the mountains ahead feel like there Mount Vesivius before she blew; and save getting buried alive--if the hole in my foot can close up, I can handle my muscle spasms--I think we're maybe seeing something good in the distance.

And no--he won't always be around.  Busy sometimes, and every child who's got a loving relationship with a parent who is a normal human being, I dread that day with the trepidation that I felt with the visits and appearances of "Susan" and I think maybe I can; knowing my pain days and the ugly RSD, hasn't scared everyone away.  

Good old Catholic and Mormon guilt--and Mom, too.  But with BPD, I am grateful for the fact my mother and her insanity now live, ironically, in the "Sunshine State."  Pretty much as geographically far away as possible away from me.

My sister is sick--symptoms, God forbid, sound like ALS from what I remember of it.  If it is, I damned better get in shape.  She's my sister, and though she gave me the TBI that intro'd me to Dr. J, I think she might need me--with RSD and all.  Because I will understand best.

God bless all--stay safe.  Today was one of few good days in a LONG fucking time, and damn, did I need it!!!

Changing Piorities

God, never thought I'd want one of these!

http://www.arjo.com/au/Product.asp?pagenumber=2185&Product_Id=211&ProductCategory_Id=64

Shit if I can afford it.  But I have a pressure ulcer.....hmmm, call Regence???  A pressure ulcer from sleeping for six hours?  Brother, let someone else educate them on CRPS; but shoot, I do not spend all my time in freaking bed; except I can't change my foot dressing now.

DELIVERIES AND HOME HEALTH ARE  GROUNDED.
WTF AM I SUPPOSED TO DO NOW FOLKS???

Ketamine-maybe; Ketamine coma, no way!

Try ketamine internally--naw, I'll pass!!! 

But the topical is helpful in RSD and proven not dangerous.

Medicare doesn't pay.

I don't think they pay for infusions.

Magnesium maleate, lidocaine (for people with normal rhythms)

I'd really like to not go through this again, thank you!  I feel like a fucking old lady for even considering it but Christ, even though I am six months from homeless, it'd be nice to not suffer this way.

BUT to those courageous enough to be gineua pigs, thanks, I will pass.

 But I like to breathe, pet my kitties, enjoy their much loved comfort, the emails and good wishes of friends.


Shockingly, my dad is out in the weather--running errands that couldn't be avoided.  He's bringing a fresh supply of bandages at least and something to eat; I guess I better stash any pain medication-life on this earth would cease