[QUOTE=Always_Believe;1131235][FONT="Comic Sans MS"][COLOR="Purple"]LL
At this time, I don't have that option. Coming from the 'provider' side of things, I hear it discussed all too often and I don't want to be one they are talking about. Hence, the reason I am not asking for anything...and I suppose, ergo the reason my rehab most likely won't progress.


Hey Girl,

I have been sitting with this statement for a bit. At first I didn't want to respond because I have to say honestly that it made me kinda mad. My first thought was What? no! Rehab is probably your best shot for improving your functioning and I don't really believe you would throw away the opportunity over what looks like pride and concern about what others think. I am hoping you made this statement out of an abundance of fed up-ness. I don't know how many articles I have looked at that stated the aim of a sympathetic block was to bring the pain down enough so people could rehab. You need rehab to function better! It was difficult to get, don't blow it by not participating fully. Orthopedists deal with people needing pain control so they can work in PT, this isn't unheard of. So what if they talk about you? It's your life, your body, your outcome. Focus on the long term goal, getting some life back and to hell with what people think. We have all lost vanity and pride over this disease. I lost mine dragging myself across the floor on my butt for months to get to the bathroom when even being up on crutches was too much. This wrecks havoc on pant seats, I gotta say. The only reason I don't have to do that anymore because of rehabbing persistently.

Have your fed-up day, we all do, but then let it go and move forward even if just a little. You got PT to go to after all...

I am sending more Healing Love,
Littlepaw

PS I apologize in advance to you or anyone else who might take offense at my post. I am not mad at you. I just feel strongly that we have to take care of ourselves even at the expense of our self image and regardless of other people's lack of understanding.

LP~
I love your honesty. I love you rooting for me, on my side. I don't get to have anyone on my side. No one roots for me.

As for the statement...I wasn't referring to blocks...given that my ortho has only seen me twice and has a hard time swallowing the "RSD thing you speak of", I don't think he would start with a block. I hate being 'that guy'. I was 'that mom' for years when my Adam was in school/hospitals...I had to be, he couldn't. I hated that.

My PCP won't refer me to PM yet. I got a referral to neuro but I can't find any in the area that will take the medicaid plan I chose. Nor can I get my insurance to assist with the issue. There's a neuro who also does PM that shows up on my plan, but he sees patients in WI and I can't get a clear answer as to whether or not IL medicaid will pay. See, he's on the consult list at the local hospital, so that IL address shows up on the insurance list first...with a WI phone number that is the billing department. I know this because I went through 15 pages of neurologists. Looked them all up. Crossed off the ones dedicated to pediatrics and sleep disorders. Crossed off the ones dedicated to Alzheimers and that had horrible (and I mean horrible) reviews. Called the rest of them to confirm if they accepted my plan or not. I was left with this ONE in WI. I don't know where to go from here.

I want to rehab. I WANT to go back to what I have loved my entire life. What I have wanted to do since I was 5 years old. I buried my son. That should have been enough. It wasn't. There's more. Someone out there somewhere won't be satisfied until I have lost everything.

It won't happen without a fight. I'm gonna get bruised, battered, broken and torn. Some days I might be shattered into a million pieces and cannot see anything beyond my tunnel of self-pity. I am grateful I have you all to put a band-aid on my wounds and pull me out of my tunnel and back into the ring.

I'm waiting on a call from case management with my insurance. I'm sure that call won't come. So I will call my insurance again. Until I get an answer, I will call. I have an appointment with my ortho next Monday. I made a mistake when I made the appointment, so I will ask to speak with the nurse when I call to cancel that and make a new one.

AB:

I applaud you wholeheartedly for getting back in the ring. I can't imagine what it would be like to lose my son. Well, I can imagine - but just the contemplation of it tears at me. All I can say is I believe there is a reason you're here now.

The medical field is not set up to help us. Fact. It's not their fault; they were trained otherwise. There are always flowers in the weeds, but they're an absolute rarity, and even then, a good flower helps you help yourself.

This place has a lot of good flowers.

So, because our own best medical professionals don't understand this condition, lots of us here are desperately seeking ways to take this into our own hands. But we're so twisted up in this awful RSD Gordian Knot that we have no idea where to even start, let alone what to do. And lots of the things we do try make it WORSE and we have no idea why.

I have to defer to many of the fine folks here, as well as PTs/occupational therapists, on the appropriate guidelines for physical rehabilation. With RSD, the line is so very very fine as far as what constitutes actual forward progress and what constitutes adding another layer to the Gordian Knot. On the physical rehab side, all I can say is to get to know your own body and trust your own non-emotive intuition above all. I do love the warm water recommendation. Constant, easy motion of the affected limb(s) is, in my opinion, the best way to proceed here.

Getting back to the core issue though: How do we fight something that is quite apparently NOT understood by medical professionals? Indeed - many traditional therapies and modalities actually make RSD worse.

What I am very well versed in, by necessity, is the mental component of rehabilitation. And there is no standardized training for it. Not yet. There's no PhD in "Consciousness." Neuroscience is trying to circle around it, but they're still trying to look at the tangible, material component of something that is not physical. The brain is the creation, not the creator. But I digress.

And yes - it helps to have working knowledge of the human body to get there, to the point where we can start to untangle the dang Knot, but not a whole lot is required. The one thing RSD experts seem to agree on is that the nervous system is affected. Whether it's the affectOR or the affectEE is another story - but regardless - at least there is common ground for the following:

With RSD, the nervous system is in a self-sustaining fight or flight mode.

Looking a little deeper - it's primarily the autonomic nervous system we're talking about here. http://en.wikipedia.org/wiki/Autonomic_nervous_system

Quoting Wikipedia: "The autonomic nervous system is a control system that acts largely unconsciously."

AND HERE LIES THE BIG PROBLEM. RSD has its most significant impact within a control system that is outside of our normal CONSCIOUS awareness. It acts in our sub-conscious and "un-conscious." So it appears there's this system gone haywire and we're apparently helpless to do anything about it. Until we ask the question:


How do we consciously influence our subconscious?


By using our own mind as a tool.


Here's a post on how I got started: http://neurotalk.psychcentral.com/thread202210.html

It's not mind over matter - it's mind IS matter.

And I'm not saying we can just close our eyes make a wish and POOF - we're healed. I'm not recommending New Age crap about "manifesting all of your desires through the law of attraction" like The Secret. Just an open mind and an honest attempt to truly get to know one's self.

It took a long time for our respective Gordian Knots to get to their current size, and it takes a while for them to unravel.

The good news is - to the best of my knowledge, EVERYONE has a mind, and there's no added risk of further complications and side effects if it doesn't work. And it's something that we can do ourselves - actually taking matters into our own hands.




...Sorry for the diatribe on your thread, AB. I've become very passionate based on my own relative experience and want to share and help. I just hear so much honesty and heartbreak in your posts... along with a willingness to look deeper at yourself and forgive.


Wrong.

Again, I appreciate your thoughts put into words. Beautiful to envision what your words look like in pictures.

Thank you for being a flower. I have (or had in my last house, new house is in the works) a blue rose (at least one) in every room. My son was buried in a bed of blue roses...we each laid one with him before they closed the casket.

I wake with a thought of my son every day. I go to bed with another.

Always believe: I wake with a thought of my son every day. I go to bed with another.