NeuroTalk Support Groups - View Single Post - This road is too long and bumpy-alternate route?

Always_Believe · 03-24-2015, 04:59 PM

Quote:

Originally Posted by Littlepaw

Quote:

Originally Posted by Always_Believe

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.