Friday, December 23, 2011

FOUND MY LIMBIC SYSTEM LONG ENOUGH TO SAY MERRY CHRISTMAS!!!



Kat,

PT/OT, and any physiotherapy for RSD can be greuling and totally exhausting!!!!  You are actually seeing the sides of me that are doing well.  Yes, slow speech, appearance is not Julia Roberts, but I will get there some dau!!!!  It's a long, greuling road to recovery and ya know a couple more heating pads like the one I purchased myself would make life all the more bearable.....God, I just pray that come June when my housing voucher ends, I have a place to go, and hell, at this point, a retirement/disabled housing would be just fine.  Especially if it had a hot tub!!!  Such it is to dream!!!

Love to ya all & successful holiday   if you don't see my mug shot online or my body being zipped into a body bag after parental units murder; but I will keep posting!!!!

Love ya!



THE MORNING AFTER....missing my my limbic system--added a page (ahem!!!!)


I trust I look like shit here; this much I know.  Interesting especially was the sudden "oh I didn't realize you were actually sick, but have always believed you."  Yeah, if it was a "psych" issue, you old bat!!!

Oh well, I am determined to have a

no matter what--even if it's after she leaves!!!!

Happy, Happy, Joy, Joy!!!!!

Thursday, December 22, 2011

Hydrotherapy Day--Thursday-tired, so tired





       My goal is to be able to have someone take photos or videos of me (eek!!!!!) while in my next hydrotherapy session; I am exhausted, but of note, I have already been able to rely more on other measures, such as heat, rubs, etc, and am hoping in a few months to scale back more on medication.  If only the YMCA did not make it so daggone hard (letter from IRS, statement from Social Security 30-90 days old, and then they will "see what they can do...."

Get this:                                               From this:
I realize we're all low on funds, but asking people with physical limitations to run all over town and back and probably end up with maybe a $5 decrease in a $65/month fee for their gym, they are asking, IMHO, a bit much.  Cuz to me, it feels like the NYC marathon.  They make it sound like "no biggie."  Then you do it, lady.  Cuz I am about to pass out.

I worked at it extra hard today, so I am guessing I will be extra useless tomorrow.  I am going to have my housing Case Manager take a video of me and see if it will post/upload.

I kept it short, I am exhausted!!!!  At bloody 8pm!!!!  But I'm working on it.

I am beginning to re-think even short, low-dose hospital based courses of ketamine.  Not sure it's available in Washington or if my insurance will pay....we'll see.

Mom wants to "donate a queen sized bed," but demannds I "don't embarass her."

I told her to hire the cleaning service of her choice and then she wouldn't be "embarassed."  Screw her!  I have a few things on my plate.

THIRTEEN DAYS!!!!

ALLY, MY RSD ANGEL



ALLY, YOU ARE MY 


RSD ANGEL


THIS  CHRISTMAS



I WENT TO A LOT OF FUNERALS THIS YEAR
FOR A LOT OF REASONS, YOURS WAS THE MOST TRAGIC AND SENSELESS.


I AM SORRY TO YOU FOR THE WAY IT WAS HANDLED; I CAN ONLY SAY I HAD TO WALK AWAY FROM THAT.


YOUR SPIRIT LIVES ON; YOU TOO, WILL NEVER BE FORGOTTEN!!!  FIGHT TO THE END, EXIT WITH GRACE AND DIGNITY.

Saturday, December 17, 2011

Acceptance? Never.... Love? Equally unlikely.



i got to thinking of the $200 I had saved to buy my family each.  I felt so bad about how I've treated them, I bought myself one of these




I bought myself a Kindle Fire instead.  Now if my mom wants to call me cold, selfish, and a bitch, at least she'll be close.  Oh, and carry on about how I can't afford it.


But you guys got to check these things out---they are  sweet......
http://www.amazon.com/Kindle-Fire-Amazon-Tablet/dp/B0051VVOB2/ref=amb_link_359250382_2?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-1&pf_rd_r=1G316E6AP24CQ633ZP4C&pf_rd_t=101&pf_rd_p=1340226322&pf_rd_i=507846


My heart FELT small and my heart WAS FEELING broken~but anyone who gets spoken to by their parents in this manner:




Court order aside; it's over 1 year old now; I have to re-file....seems pointless given repeated violations and the fact that I am unlikely to see her again..since she leaves for Florida 


But with respect to the voicemail and the proposed shopping trip:

  • I never said that I didn't want to go.
  • What I said was that I wanted to wear my "Coast Guard" t-shirt
  • but any pants would need to be material I could tolerate without severe pain, as I would wear them for >4 hours.

But does a daughter's ache when her mother says 

  • "Fuck you you goddamned whore!""
  • "You're a fucking bitch..."
  • "I hate you--you are a pain in the ass."
  • "You are so fucking crazy they will  never find the right medication because you are so fucking stupid---assed nuts there will never exist a medication to treat 'crazy bitchy;'
  • "You don't know shit about shit, and your medical problems is just a huge amount of imaginary BULLSHIT."

My mother said all of those.......


My stepmother: With the RSD;

  • I tell her I have RSD
  • I show her the letter from the www.rsdhope.org
  • I send info on ME and on RSD
  • I hear her say she has read it
  • She even says she is "worried"



But when she shows up:

  • We go from Winco
  • Straight to Costco
  • Then to Right Aide
  • To about five different stores......
  • Then to Walmart to shop for clothes "I need" 
    • none are things I can tolerate
    • I want to rip them off within and sit in my chair naked.



Then she shows up a day or two later with groceries, smiling, presents.  What is with that?  Drive me into the ground until I am dead, and then smile pretty for the camera??


It really does make me feel like a whore to accept it, so I do my level best not to.  I avoid her, and I try to stay the hell off the map...  Christmas???  For them??  A nice e-card, pop a valium, and enjoy what I BOUGHT MYSELF:





Friday, December 16, 2011

OPEN LETTER TO THE FAMILY.....

An Open Letter to my Family,

You have gone, it feels, to great lengths to do whatever you can to break my heart.

When someone shows you how ashamed you should feel, you simply throw money at it, or me, fine, you want to buy me a new outfit for Christmas at your house?

Ok, I have no problem with that.  But please make it something I am not going to be racing home after the Christmas festivities and rip off because the pain is so intense I am about to vomit from the pain caused by it rubbing on my leg that my leg is now swollen, purple, and will take days, if not a week to return to a semblence of normalcy.  Please make it something that will commemorate a friend who just died at age 16 of cancer of the CT scans and treatments related to her RSD?

Please just soften the tragedy of my last 24 hours a little.

Oh, and thanks to the pain, it's 4:45am, and I've yet to sleep.  Ten am was when you wanted me to me useful?

Please just consider my feelings on this one day???

Forget about the hypocrite brother I will very likely have to sit next to at both festivities!
The faked smiles on my part.

Just freaking leave me alone!  But this????  You can go to hell!!!!


If this is your idea of a voice mail, then bite my ass!!!  Clearly a violation, but you've already decided it's just a piece of paper.  But if you want people to do as you want--this is a bad way to start.

I will spend my holidays with a friend:  Who knows what unconditional love is:

Main Entry:   unconditional love
Part of Speech:   n
Definition:   affection with no limits or conditions; completelove
Dictionary.com's 21st Century Lexicon
Copyright © 2003-2011 Dictionary.com, LLC
Your not liking something I do, disagreeing with it, etc, and placing limits of your love on whether I behave the way you want or in the fashion in which you do so is the definition of narcissism....I don't bow to it, and I stopped when I moved out of your house, and if you want to cut me out of your life, it only proves that I am right about you, Cecelia
"The study of human nature may be thought of as an art with many tools at its disposal, an art closely related to all the other arts, and relevant to them all. In literature and poetry, particularly, this is especially significant. Its primary aim must be to broaden our knowledge of human beings, that is to say, it must enable us all to become better, fuller, and finer people." -- Alfred Adler
You all have a good holiday now--and if you are spending it around this, I wish you luck, but it was your choice:
Borderline Personality Disorder:
Narcissistic Personality Disorder


There's no recovery from the narcissist or borderline; only understanding.  Educate, boundaries, and lots of distance.  I sucked at the latter.  I figured no harm since she's leaving January 2.

WRONG!


To the rest of you, remember, no drama is better drama!!!

Thursday, December 15, 2011

Stiff in therapy today: Parents behaving badly!

Little stiff today in and out of the water..  I loosened up after a bit, but it was hard (not that way, get your mind outta the gutter!!!  LOL) to get into it and sharing the pool was a first, so I had to make some adjustments...



God Bless Ally (1995-2011); MY FIRST "RSD ANGEL"
No more pain; partying with your predecessors!!
I am so proud of you; you knew love and compassion in the true sense and long before people 5 times your age....You were an ANGEL to begin with, I am only sorry RSD had to be added.

Until God decides we meet, may He hold you gently in the palm of His hand.

....a little about me



Ok, so Dad wants to waste money on an outfit that is material that is going to send me into orbit pain-wise, and I want to think about it.  Think about it!!!  I have things I would find helpful, oh, like a pair of warm gloves, new pillows for m, y bed, clothes that are comfortable against my skin; as opposed to "Do I want to spend 3-4 hours in clothes that will make me want to vomit from pain?"  I was considering not only spending-in violation of the court order-the time at her house, just because it is the last time I will ever see her (maybe just to make sure, who knows, us LDS-ers are great at guilt, even the former ones), and mentioned how I felt about my father's "offer" better known as lack of ability to accept having me as is child.

Neither can.  Here's my mother's voicemail:
Yeah, another violation--like it's always been:  a piece of paper!!


How about a simple solution?

I spend Christmas with neither of them?  They can't behave like mature adults?  Screw them both!
My mom's response will be that she will take back what she got me.
Good...  I wouldn't want that on my conscience....and I have more self-respect than that.

Besides, I have her party to plan for when she leaves.


As for DAD:
I will never meet his standards.  Why bother????

Why did I have to get such shitty parents?  Why couldn't I have gotten parents who'd give a crap if I did kick?  Oh, I don't plan to anytime soon.

My heart has a hole in it where God puts a parent.

Wednesday, December 14, 2011

Allodynia of the heart? Maybe I am just "oversensitive....." Guess maybe it's a matter of my damaged Limbic System....


I am sorry.
I may be bipolar, or at least the one in the family who knew something was wrong, asked for help, and got a diagnosis.
I may be the one who doesn't fit your standards: you want to take me shopping so I am presentable at Christmas.
Did you stop and think that maybe there's other more important things I need?  
A winter coat?  Gloves?  Software for my computer that makes it easier to type?
Pay off the medical bills you promised but never did?



Guess maybe I am being selfish......
They just tell me that I am taking it too seriously...

Guess it's that "over-emotionality" from my damaged limbic system;
Read this page, though in its entirety, I highly doubt you'll finish-
but that's on you, not on me:

Happy Holidays from my living room.

Ya want me to get the most outta hydrotherapy don't you

(even though you did nothing to make it happen or get me access to a heated pool between sessions)




MY RULES--NOT YOURS.....




  • You can choose to be a part of my life or not
  • There is no passive participation; only active.
  • I give back just as you give to me....
  • Love starts at the home.  Just not mine...
  • I am of legal age--I make my own decisions.  We may have to agree to disagree.
  • If I feel attacked in my home you will be asked ONCE  to leave....
  • The second request will be made by law enforcement.
  • My no means NO.  Those who cannot respect this will be shown the door, first by me.  
    • If you refuse to leave, you will be assisted by law enforcement..
  • I am of legal age and make my own medical (and psychiatric)  decisions.  
    • You don't have to agree.
    • You don't even have to like them.
    • But you do have to treat them with respect.
  • When you are in my home, you will show me (and my cats, as they live here too) respect even if you disagree with lifestyle or general choices I make.
    • If you cannot do this, you will be shown the door.
    • If you refuse to leave, law enforcement will be asked to assist in showing you the way out\
  • In my home, I ask you to show respect for those that live in it-simple, easy and direct.  I suffer from chronic health problems and I ask you to show respect for me when I say I am not feeling well.  If I ask for peace and quiet, please don't make me feel like I have to go to the ends of the earth to get it.
    • I do not need further educational materials on RSD: I live it day in and day out.
    • I know how I sound, I keep a video journal.  Assholes like you are less than helpful.
    • Severe, Chronic pain has become a way of life.
    • But it doesn't define who I am, what I am, and how I live.
    • I have enough worries.  Bring something light.  Suggest we do something fun.  And if you find my home that repulsive remember that the last session of hydrotherapy exhausted me so much, I slept for 15 hours from pure exhaustion,
    • Today I have a headache~~please trust I need some down time.


Will I ever get it from my family???


So, that being the case--I have many treasured friends, you can do me one last favor:




Thirteen Days and Counting....and NO MORE


Recorded 12/13/2011

I have chosen to not allow my family humiliate or denigrate me in any fashion; and these hold to them whether they are 47 or 74.

They don't have to like it.  They can dislike it until the cows come home.

They can make idle threats, they can scream, yell, piss, moan, moan and groan.

It comes to a set of choices:
  • Do they wantt to take part in my life???
  • Are they making the choice not to be a part of my life
  • Active or passive participation

Charity (love-not handouts) starts within  the home; according to some facts the "Umm...uhhhh" as my eldest brother screamed at me, yelling for ten minutes and nineteen seconds that "G-dammit, do you ever fucking listen to yourself????" [insert babble about multitudes of research he's done on RSD and how it's all started with hydrotherapy and I must get started straight away]

"Look, Paul," I kept my voice calm and even.  "My income is $875; of that, about $440 is spent on medical bills.  Hydrotherapy would be 2-3 days per week. My copay is $40 per visit because the state decided I don't need their assistance with PT, OT, dental or hospice.  So, that would be about $400.  Add the $440 I already spend on medical/dental; please tell me how I am to pay rent, utilities, buy food on $74 per month of food stamps......"

He was having none of it.  "You just have to want it, and accept there's gonna be some pain in the beginning!!!"

I gave up and hung up.

Come Friday--his birthday.  I called to wish him a happy birthday; and ask him if he wanted a gift certificate from Amazon--or the donation to a charity of his choice.

He ignored my call.


I bought two new Kindle books.  To hell with him~~he can go to hell.  No more from him either.  He's feeding the  "Boogeywoman". 

Florida.  13 days!!!

Sunday, December 11, 2011

Some Days You Stay in Bed...Others You Get Up & Deal....




Thursday was the day from hell, Friday---shit....it only got worse.

Tomorrow, I actually have hydrotherapy.  If I don't get there tomorrow, someone is going to die....


Here's for laughs!!!





I dare someone  to screw up my ride.  I removed the video because most of it sounded like an imitation of Boris Karloff.  I am just going to make sure that more of it is (and it was) done in a floating position whenever possible.

They seemed to go easier on me, and idk if someone whispered in their ear that I was in so much pain last time, I was shaking...

But right before the appointment, my thoughts were:



I am going to KILL the person who screws up my ride......
I just hope I don't oversleep...
urgghhhhhhhh

I am sooooo tired......why can't I sleep???



I can't possibly be stressed already!!!!!
I just like the kitty and his claws!!!

Friday, December 9, 2011

You can say you're sorry.....Lessons Learned this week



You can say sorry a million times, say I love you as much as you want, say whatever you want, whenever you want. But if you're not going to prove that the things you say are true, then don't say anything at all. Because if you can't show it, your words don't mean a thing.
The things that people say versus the things that they do are at most times much different in comparison. As the quote says we can say sorry a million times, or tell someone that we love them as much as we want, but if we are not really sorry, and if we don't really love them, it will show in the actions that we commit after we say sorry, and after we tell them that we love them. 

An important lesson that we must learn in life is not to say things that we don't mean, and not to say things that we might not be comfortable enough yet proving to someone. The best rule to go by is to just always be as honest as possible, because honesty is the best policy. Don't lie in order to satisfy somebody for a moment, because the pain that you cause them in the future can last them for a lifetime.

 You have to know what your mistakes are, before you adjust them, come to terms with them

And there's always someone with a bigger mouth than God himself that will make you look like a total ass...


I wanted to quit, I wanted to stop, and I nearly dropped..
But my good friend made me stick with it,
but not to be afraid to let them know what my limits are
That it's okay to have them,
That it's okay to voice them,
to speak up, to say so, and to be strong, not weak
when I say I have them

Cuz I didn't had to be a "super-patient"
I had to learn that lesson hard.

Wednesday, December 7, 2011

Bio Tuner-Details & Reviews of product



Product Features

  • electronic relaxation system
  • Micro-current energy pulses appear to have a profound balancing effect on the individual
  • Quartz crystal frequency control.Two of the modes contain the 7.83 Hz Schumann (Earth) frequency.The BT7 Bio-Tuner outputs a modified rectilinear waveform with over 500 harmonic frequencies in each pulse. 6 different user-selectable Modes settings are available.
  • Advanced microcomputer operation. The proprietary software routine is written by SOTA to ensure consistent and reliable output.Headset and Output Signal Electrical Circuit Verification Indicator.Low battery warning light.
  • Built-in 20 minute digital timer.Custom Headset.A push-button switch to easily change the output to each of the 6 different modes.

Reviews:



11 of 11 people found the following review helpful:
5.0 out of 5 stars I warmly recommend, June 7, 2009
By 
Jacques "Jack" (Canada) - See all my reviews
This review is from: Sota - Bio Tuner (Health and Beauty)
This device is really wonderful! I have fibromyalgia and I can have deep refreshing sleeps using this equipment only 20 minutes once a week. It's very easy to use and most secure. I've used it now for some years and it always works without any troubles. I think it's much safer and more natural than drugs. If you can cope with fewer medicine, it will be also cost-effective in long-run. There are lot of research behind it, as you can see with the phrase "cranial electrostimulation therapy". 
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3 of 3 people found the following review helpful:
5.0 out of 5 stars Would be worth twice the price!, April 13, 2011
By 
Cassimie - 
This review is from: Sota - Bio Tuner (Health and Beauty)
I didn't expect much from this device, but I've had anxiety and depression for years and after trying what seems like everything I was willing to try this one last thing. I'm so glad I did! The instruction booklet said that it could take up to four weeks of daily use to see results, but I felt a dramatic difference in my anxiety within the first fifteen minutes! I've used it nearly every day since it arrived and insisted everyone in my family try it too. If the Bio Tuner had cost twice as much it would've still been well worth the price--and that's the highest compliment I've ever given a product!
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3 of 3 people found the following review helpful:
5.0 out of 5 stars Works well for moods...., March 30, 2011
By 
Brian Slanger "PhotoMaryland" (Albuquerque, NM) 
This review is from: Sota - Bio Tuner (Health and Beauty)
I sometimes I forget that I have this unit. In the instructions, it says it can be used for anxiety. I have
found it quite effective for this. Once a day for a few weeks, and I forget that I was anxious at all.
Cheaper and safer than drugs! Well recommended.

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2 of 2 people found the following review helpful:
5.0 out of 5 stars Think Better Act Better, September 7, 2011
By 
Philo Bedo "TMan" (SF Bay Area) 
This review is from: Sota - Bio Tuner (Health and Beauty)
This thing really makes a positive difference. It puts you in a good mood and gives you more mental stamina and confidence. I've only been using it for a few days. I'm really looking forward to seeing the effect after the recommended four weeks. I highly recommend this to everyone. I knew this would be a hit since I've read both of Robert Beck's books and seen many of his videos.
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Santa, I've been a good girl this year, just that and an electric blanket, really is it!!!!

I think the words that are going to apply are "dream on."  $195 is not the kind of dough my dad puts out on me.  No more than $100.  That's it-period.

If I were my sister or one of my herion shooting nieces, that would be different. 

But it's not, I am not, and never will be the "mother" of his "grandchildren"  I gave his 1st up for adoption.  Unforgiveable.  What was I supposed to do?

Shoot, to hell with it, save my cash, and pray.  I frigging hate the holidays---

Ketamine coma anyone???

Day Two post hydrotherapy

Ok, I asked my pain doc for suggestions, and he recommended this; has one RSD patient recently acquired who swears by it, and countless fibromyalgia patients, patients with anxiety who swear by it, and anyone who has reviewed it for Amazon has given a 5-star rating:

http://www.amazon.com/Sota-Professional-Edition-Model-BT7/dp/B000NB88C8/ref=wl_it_dp_o_npd?ie=UTF8&coliid=IY621DTP1XU8A&colid=1A9BHAPZJWC9Z

Granted, they're pricey and not covered by insurance because the FDA/DEA isn't involved to muck it up and screw with it; as he put it (seriously), but he's lately turned to stuff like this, and has not let me down-ever..................................................

Right now, it's knitting in semi-darkness with the lighhts on, but shoot, I would willingly shell out $200 if I could figure out how it works, which is tough to tell from the photograph, but I'd kill for one.

But right now, in the Men's department (XL), they have a flannel pajama bottom in "the material"" (aka, the kind thhat doesn't put me into orbit.  I also want to try a heat lamp and get an electric blanket.....

Here's the video--I am halfway presentaable

And HAHAHA you can hardly see me!!!!  Same instructions apply if I start to sound like Boris Karloff...skip ahead a couple beats...should solve it


The only reason I don't LOOK like Boris is because it's so damn dark because I am still recovering...guess what????


Hydrotherapy tomorrow!!!!


No rest for the wicked!!!!!










Again, for reference, RSD/CRPS, aka, Causalgia---a type of nerve pain (how I wish they'd rated "Sciatica") on here, but maybe that's what is meant by "Chronic back pain:"


RSD/CRPS = 42 (and it's 24/7)   
      9many nerve pain syndromes rank upwards towards RSD/CRPS)
It has yet to be studied where fibromyalgia ranks on the McGill Pain Index
Amputation of a finger:  40  (not chronic)
1st Childbiirth = 38 (Not chronic, albeit highly painful)
2nd Childbirth = 34 (not chronic, albeit highly painful)
Chronic back pain: 27
Non-terminal cancer & phantom limb pain = 25
bruise/fracture:  16

Tuesday, December 6, 2011

Be a Fruit Loop in a World of Cheerios?

Not going on camera: feel like shit.

I am feeling it....baaaaaadddddddd!!!!!!!!

I would not subject you to me on camera.  Suffice to say that I am going to tell them I need to start with some floating to loosen up, and maybe use the "worms" more than I thought.

When doing some of the exercises I found that my calf muscle was less cooperative..or stretch somehow, I don't think I can come in and jump right into the exercises....my body is talking to me, and this is what it's saying:



We already know I am a fruit loop, but I ain't havin' Cheerios today!!!!

My Day: The day after---as an individual

I was tempted to go to the ER, but realized these days, I'm only going to get about a lollipop and that's about it, and if you're lucky, a ride home, if not, security walks you to the door, furthering the humiliation, especially after they are careful to give you a copy of their narcotics policy.


So I toughed it out....called my PCP.


She's willing to treat the nausea but nothing else.  She wants to refer me to a "chronic pain specialist" who deals with "dosages of narcotic pain meds."  Yeah, probably to drop them as low as possible....I do not have hyperanalgesia, idiot, I have hyperalgesia.  Learn the difference and get back to me.  This "Rate of pain on 1-10."



Today (NEVER THAT I WOULD), the pain is around a 9.  I am waaaaaaay past feeling merely "antisoocial.


I want to tear someone's throat out because I can and becase they are there.  Rip their hair out because I feel like it.....so where does that put me on the list of those stupid happy smiley/frownney faces they get out of Waley & Wong's Pediatric Nursing Textbook (not a joke--that part is true...)



Now, I get using them this the next time they ask me to rate my pain on a 1-10.  It simply can't be done.  Not right now, at least.  And the Chronic Pain Specialis only want to lowereverything.  What does that serve, especially when I want to pull my hair out, rip out your trachea with my teeth for the simple matter that I can and I am pissed off enough to do it (anger stage of grief possibly?  Or just the "Piss Off to you too stage?) and the only thing that stands between me and total loss of sanity is some level of pain relief, whether they object to the dose or not.  I am breathing, oxygenating well, and talking in coherent sentences.

I have RSD, dammit--look here:



See the CRPS/Causalgia?  That is RSD!!!  Ok, so how would YOU be able to concentrate???


It's exhausting, migraine-producing, screaming, hellacious day.

And when you find that you are being told to get rid of, reduce the dose of what has finally given you relief.

When you work so hard to find something that works: it works: you're living at the top of the pain scale.  I cannot have too much change at the same time....and leave my meds alone!!!!!  They are between me and the prescriber--and not that my education would allow me to be stupid enough to overdose.  I've had chronic pain for 20-25+ years at age 37, and I am going to have a freaking tolerance. 

And each is an individual, dammit!!!!