AB,

I wish I could enlighten you on how to move forward, but all I can do is offer a relative perspective and hope it helps.

I found comfort in a really strange paradox. Hesitate to write about it because it might not make a whole lot of sense when put into words.

But here goes. I would point first to your screen name.

I always believed there IS a reason for everything. In Einstein's words, "God doesn't play dice." (Paradoxically, I didn't believe in "God" either, but this forum is about healing from RSD rather than religion.)

That belief led me to many understandings, because within my own relative experience, it turned out to be true.

The first and maybe the most important understanding was this: just because I disagree with something 100% - just because it makes no sense to me - doesn't mean it's not 100% logical.

Saying that "There is a reason for everything," is the same thing as saying "Everything has purpose."

And eventually I came understand that everything - even accidents - are actually purpose veiled by my own ignorance.

That started with openmindedness. A willingness to admit and then to accept my own ignorance. My own powerlessness. And that's what I hear from you AB, and that's why I wanted to post, even though this could just come off as a crap ton of nonsense.

But then how to apply openmindedness to where I was? I mean, how would any of us here on this board apply something like that? Where I was, was in excruciating pain and suffering that looked hopeless from every single angle I looked at it. To truly apply "there's a reason for everything" would either be saying that this is 1) God's fault, 2) someone else's fault, or even worse - 3) this is my own fault.

Now that's a scary thing. But I didn't have anything to lose. My worst fear was helplessly withering away in pain hurting all of the people I care most about, and that's exactly what was happening.

So I surrendered. Admitted I didn't know CRAP. (And still don't.) So I went with option 3 - this is my own "fault."

But the key - and I can't say this enough - was in how I went with option 3. Rathering than putting blame on myself for how things had turned out in my life, I accepted responsibility for it. All of it.

And I know that sounds like a bunch of fluff... philosophical BS... but I can't overemphasize how important this was. For me at least. Accepting responsibility versus Placing blame. Two sides of the same coin. Truly different perspectives.

This led to the craziest paradox. Admitting and accepting that I was completely powerless - surrendering to it - actually gave me the power to change. Accepting the fact that everything that had transpired in my life had led to this moment, right now... Regardless of how "good" or "bad" I was in the past, HERE I AM.... it was a fundamental shift in perception for me.

What it did was two things:

1) Allowed me to forgive me, God, and everyone else for how awful my life had become.
2) Set a clean slate for the future.


PS. Many of the reasons as to why we have to deal with something as awful as this aren't definable within our current perception of reality (ie this space of time we're occupying from birth to death.) That's why this is so tough. (Understatement of the century. Or millenium.)

And most importantly AB - KUDOS to you for everything you're doing.

Addiction to pain meds is a bad thing because your quality of life will always be reduced. Dependence on pain meds can be acceptable, if quality of life is improved with them.

You need to concentrate on your own acceptance that RSD/CRPS can be a long term, life altering, medical condition. Your family and friends opinion of your health is their issue, not yours, and you need to stop focusing on it. If they stick around, they'll figure it out, and if they become less involved with your daily life, than you'll need to adjust.

Even those that have supportive family members in the early stages, often find that they are lucky if they have even one or two people they can count on long term, in any type of meaningful way. You can help: by actively learning to adapt, seeking out a therapist to learn how to adjust, and not having any unrealistic expectations of others.

From your postings of how you're struggling physically, it seems unrealistic that you can get through your RN testing. And if by some miracle, you do manage to get through it, the result might very well be that it undermines your SSDI claim. This is an example that would very likely confuse your family and friends, as well. If you can't accept the new limitations your facing, how can you expect them to?

What happens with RN candidates that are wheelchair bound, btw? Are special accommodations made for them? If you were in a wheelchair, could you manage the testing more easily?

LL~
I definitely recognize the difference in addiction and dependence. I suffer from neither. Never have-even in the height of when I was on some serious meds. 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.

See my last reply regarding acceptance and acknowledgement. Although I am not certain that I cannot come to a place where both fit into this little struggle of mine. I'm also not certain I can, so I will stick with acknowledgement for now. I have only recently begun the whole responsibility for someone else's emotion is theirs not mine, so I needed that reminder.

My expectations have remained the same - help move boxes/furniture so I can maneuver/go through them and help get some (a lot) of items ready to sell. The conundrum of "independence" and "consideration" have been a subject of conversation, in that I have attempted to squash the notion that notifying me that you will be out for several hours isn't 'answering to me', it's allowing me to adjust my location to enable me to reduce my walking if something comes up (dogs need to go out, someone at the door, a meal, etc.). Would it be nice to be offered food when my pain level is such that I only venture to the bathroom twice in 15 hours? Yes. But I have learned to address that better and not place that onto someone else as much as myself for not mentioning it in the first place.

Ahhh...the dreaded RN exam. The program I am in requires a 3 day final exam. It consists of writing the care plan and performing the care for 5 patients, as well as demonstration of skills in a lab. The requirements to take the final exam are completion of necessary/required coursework, the ability to provide patient care, including positioning, transferring and mobility. That's where I don't meet the ability. Accommodations are made for the mobility challenged by: reducing the number of patients to 3; ensuring patients are located close together; allowing extra time and extra rest periods. While the accommodations would suffice - I cannot meet the provisions to providing patient care. Neither could someone in a wheelchair. Perhaps extra accommodations would be allowed after speaking with administration, but I seriously doubt it and either way, my PCP won't complete the paperwork until/unless I can meet the primary requirement.

I see the difficulty with SSDI and obtaining my RN, and I would much rather have my RN and drop my SSDI claim. The difficulty comes in when I am unable to attain either. At this point, PT thinks there may also be an issue with my hip and is insisting I use a walker at all times. That effectively removes me from the ability to take my final exam, leaving me to focus on my rehab and let my lawyer work on my SSDI claim.

[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.

Dependence on opiates is not something to be ashamed of, it a biological reality for many of us.

Have things changed over the years? Absolutely. Too many people were inappropriately prescribed strong opiates that should not have been. Now, there is a backlash, that has tightened the rules.

I refused stronger meds for something like 4 years, so I'm by no means suggesting someone newly diagnosed should consider opiates as an early option. But, if your doctors can't find a combo that gives you some relief, than it might be an option later on. If you're with an experienced RSD/CRPS doctor that you develop a trusting relationship with, they should offer you the right meds, you shouldn't have to ask for them.

Do I care what some random stranger's passing opinion is about the meds I take? Nope.

How many of them have a clue what living with RSD/CRPS is like? My guess is less than 1% of health care providers.

If you truly feel you can't fully participate in rehab with the meds you're being prescribed, than you need to request to change the rehab or change the meds. The rehab that was by far the easiest was in a warm pool, as others have suggested. I underwent a series of stellate ganglion blocks early on that would give me significant relief for 1-3 weeks and would allow me to participate in rehab more fully. Etc.

I can identify 3-4 distinct pain syndromes I experience on a daily basis:
1) Bone/muscle/tendon pain in my knee. This is due to the osteoarthritis/atrophy from the palsy/non-use
2) Burning ice/stabbing/ripping apart ankle pain. I believe this is primarily attributed to the RSD/CRPS related to the nerve damage.
3) Constant tingling with occasional shooting pain in my foot. Could be again from both the nerve damage and the RSD/CRPS
4) Muscle cramping/twitching pain in my calf and foot. I think this is most likely due to the palsy/non-use.
While the gaba helps with #2 & 3, it does little for #1 & 4. And 1 & 4 inhibit my rehab the most at this point. 3 I can deal with for the most part. 2 stops me in my tracks and I have begun to see them as flares because of what I have learned from all of you. Opiates and muscle relaxers would most likely provide the best pain management for 1 & 4 and be the most helpful for my rehab. At the very least, muscle relaxers to take after therapy.

The only thing that makes me care what my health care providers thinks is that they are what will get me pain relief. So long as they don't think of me as a drug seeker. Like my first ortho before I even walked in the door.

I can't change therapy because it's the closest one that accepts my insurance and I haven't even started yet...the initial eval sent my pain through the roof.
I can't change meds because the only one I'm on is the gaba. I suppose adding a med would be a change but I'm not sure that's going to happen.

I'll see if the Y has a warm pool. It's 45 min away, so I'm not sure how often I could get there.

Vis~
Thank you for your input. Without going into the long sordid tale, I grew up with blame for everything placed on me by my parents. Everything was my fault...but only if it was bad. If something was good, I had nothing to do with it because, according to my parents, I would never amount to anything.
Which, in essence, means I've was raised under #3. When my son was diagnosed with a heart defect, I blamed myself. Never was I responsible for promoting (and even providing) the quality of life he had for nearly 18 years. Something I did almost single handedly. When he passed away, it was my fault.
My adult life in the 9-1/2 years since then has been spent trying to undo all that my parents had me believe for so many years. Letting go of the responsibility of everything bad being attributed to something I did, or did not do. Letting go of placing blame, period. However, stating that something just 'happens' is outside my heart's makeup. Something/someone/somewhere played a part. I have discovered there is a difference between acceptance and acknowledgement.
My screen name is what I keep trying to tell myself, not what I truly believe. As much as I wish I was that strong person everyone thought I was raising my son, I was not. I failed my other children when their brother passed away. And I am failing myself now.
I am trying to push forward. Trying to recognize my limits. Some days I don't want to try any more. Some days I want to try harder. I'm trying to keep trying.