Much like Frogga said, it does come with the disease. Unfortunately I am a student in school which I had to narrow down to only online classes as I cant seem to get dressed due to the pain, and I still have a hard time. I get my days mixed up and often I find myself not even remember whathappened an hour earlier in my day.

I am at the point now where I am beginning to feel defeated and I dont think that anyone out htere will help.

Dear StillTrying -

Hi, I'm glad you are here. As much as we may regret the circumstances.

I hear you on the issue of total defeat, loud and clear. But, please bear in mind a concept that tends to play out in the end: every impossible problem is just the solution to another problem. At the ultimate extreme, a black whole in one universe may be the big bang in the next.

In our own lives, the best we can do is look upon ourselves with love and kindness, and make our choices are available, based on what we have in front of us, as opposed to our long-held expectations. Then we find the best fit for what we know have to work with, and who we are - right now - is the solution for that other question: the perfect person our optimal (as opposed to ideal) choice of lifestyle would seek out, assuming it had a search committee.

The other way to look at the whole thing is that lasting happiness can never be dependent upon conditions, 'cause the one thing conditions do is change.

That said, it's true I didn't have to deal with this as a young man. And the suffering of sensing that one has been cheated out of life must be overwhelming.

As a 48 year old bankruptcy attorney with a wife and two young boys, I had my own - and other's - set(s) of expectations to deal with. And walking away from a career I had spent 24 years developing wasn't easy. For me, things began to change once I got involved with the meditation community, which happened to be good sized where I lived at the time. Although I had not turned a profit in it since becoming ill, I had been despirately clinging to my professional "identity." Then one day at my desk, it just hit me: giving up my identity as a lawyer meant nothing more than dropping a pre-existing set of expectations that were really nothing more than atttachments to old things that used to make me happy, but no longer did. At which point, I could freely and happily begin the process of unwinding my law practice.

Karen Horney, one of the great social psychologists of the mid-20th Century, defined neurosis as the pattern of holding onto conditioned responses, once stimulous had ceased. And don't worry, I'm not calling you neurotic! It's just what we all face when confronted with big changes.

ALL that said, I truly believe that treating ourselves - as we are - with love and kindness most always be our fundamental place of orientation. May you be happy.

Mike

Dear Mike --

You are so fortunate that you could not only mentally adjust but that you could also easily AFFORD to just walk away from a law practice. I envy you and your family...I have also tried very hard to use mindfulness to help me in my current situation. But no amount of meditation is going to change the fact that we need for me to work, and to earn benefits and to save for retirement, rather than retire at age 49 into a life of disability. It's just not in the cards...so I need to get better.

You are truly blessed.

XOXOX Sandy

Sandy -

Thank you for the good thoughts. But understand I never meant to imply that work and a meditative perspective are mutually exclusive. Far from it. Just that everyone has to play the hand they've been dealt with as much focus as they can bring to the thing at hand. In the world of "mindful pain management," it is said that Suffering = Pain X Resistance. The advice I'm giving is to avoid sailing into headwinds, and if that's where you have to go, then you need to first learn how to tact. Simple as that. Or in an even more physical metaphor, use the greater mass of an opposing body to fling yourself around it. But for God's sake, don't think for more than five minutes that all is lost just because every assumption and plan of and about who you are and what you would become has suddenly come undone.

Think instaed of incorporating a little Tai Chi in your toolkit. Because it's a break that anyone trying to navigate their way through the world of work and CRPS definitely needs. And always, always, always question your own operating assumptions.

For me, it wasn't a matter of being able to afford to walk away from a law practice, as much as it was that post-injury, as hard as I could work, I was only able to make enough to cover my office overhead operation, netting maybe a few hundred a month, all the while we were scraping by on my wife's salary: and no private schools in sight.

That said, and for the record, after being told by the agent who had sold me a disability policy 14 years earlier, that it didn't cover me so long as I made something through my employment, I let it go for a while until another lawyer in my office demanded to read the policy. I had that protection all along, so long as my income had dropped "substantially" on account of illness of injury. And because this was a private policy, paid for on my own with after tax dollars, there was no ERISA pre-emption and good old pro-plaintiff California case law governed.

And I filed the completed disability claim with the carrier - all schedules attached - several weeks prior to making the decision to fold up the tent, and the two really had nothing to do with each other. Even as I filed the insurance claim, I was not prepared to giving up my professional identity, honed of years dinner meetings in Los Angeles and flying around the country to attend professional meetings with the same crowd, not that I had done much professional travel since falling ill.

But there was no hope of me turning a profit let alone surviving the demanding work of business bankruptcy litigation in this condition, each side pummeling the other with one or two motions a day. And although I didn't realize it, it was just a matter of time before I had to let go. (I got through the last deposition of my career that of another attorney in some really unpleasant litigation - one of the nastiest of my carrier - stood up and collapsed on the floor in spasms and didn't get out of bed for two days thereafter.) The meditative perspective was really more of an extremely helpful catalyst than anything.

But, the fact that there was something of a soft landing was just a happy accident: I certainly had no idea what was going to happen to my claim when I notified the carrier that I would be moving on.

Finally, there's another issue I have to deal with. A year and a half before this even hit, when it was clear to all the I was not exactly "Mr. Efficiency" - putting in 14 hour days when only 10 - 11 were expected, I was finally diagnosed with adult ADD. But I couldn't tolerate any of the stimulant meds, which is what sent me to my doom at the gym in the first place: trying to keeps my focus by getting back in shape.

Since then it's only gotten worse. As I seem to recall mentioning a little while back, keeping control of paper has become impossible for me. Little known fact, the large majority of people have composite "verbal" (including arithmetic, algebra, etc.) and "non-verbal" (largely spatial reasoning) IQ scores within 3 point of each other. When the scores diverge to 6, educational psychologists take note, at 12 the kid is referred out for script. When last tested a month ago, I was at an "extreme" 45 points. Just trying to physically enter clean hand-printed comments on a four page documents and fax it out this afternoon was enough to send me into apoplexy. So while I can navigate PubMed okay, and know how to look things up, I realize that there's no way I could work 35 hours a week as a librarian, for instance. When the rubber hits the road, I just don't have the clutch!

Finally, getting back to the theme of every problem as a solution to another question, when I did a couple of Shinzen Young's call-in programs last weekend, one meditative technique came up that I love: Doing Nothing. Sitting for an hour with my ADD brain and no intention, goal, focus or method. And as soon as you notice even the most subtle of intentions, as in following a will o'wisp of random thought because it ignites even the mildest quality of interest, you recognize that as intention and drop it as well. And in that one, I had a ball.

Mike

Thank you. Very much.

I have a disability policy. I was told that my shoulder injury, which had just occurred (and in my mind was a relatively minor event), was going to be deemed a "pre-existing" condition and disallowed. I should obtain a copy of the policy and see exactly what is written... and attempt a claim anyway.

XOXOX Sandy

Yes, i have been struggling because my pain is so severe that it is sometimes all i can think about.

I was putting "CRPS" into PubMed Monday night, to see what was new, and this popped up:

DJ Libon, RJ Schwartzman, J Eppig et al., Neuropsychological deficits associated with Complex Regional Pain Syndrome, Journal of the International Neuropsychological Society 2010 Epub 2010 Mar 19.

Abstract
We sought to elucidate the existence of neuropsychological subtypes in Complex Regional Pain Syndrome (CRPS). One hundred thirty seven patients with CRPS were administered tests that assess executive control, naming/lexical retrieval, and declarative memory. A 2-step cluster analysis that does not require any a priori specification regarding the number of clusters, classified patients into three groups. Group 1 obtained scores that were in the average range on all tests (n = 48; normal CRSP group). Group 2 (n = 58; dysexecutive CRSP group) presented with mild impairment or statistically low average test performance on working memory/verbal fluency tests. Group 3 (n = 31; global CRSP group) produced scores in the statistically low average/borderline range on all tests with particularly reduced scores on naming/declarative memory tests. Between-group analyses found that the CRPS group 1 obtained higher scores than CRPS groups 2 and 3 on all tests. However, groups 2 and 3 were equally impaired on executive tests. CRPS group 3 was impaired on tests of naming/memory tests compared to the other groups. Significant neuropsychological deficits are present in 65% of patients, with many patients presenting with elements of a dysexecutive syndrome and some patients presenting with global cognitive impairment. (JINS, 2010, 1-8.).

PMID: 20298641 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/20298641

Fortunately, I got a copy of the article within a couple of hours. Reading through it carefully puts the abstract in some perspective.

The essential results are as follows:

Relying primarily on a statistical technique called "cluster analysis" of a sample of 137 patients with more or less chronic CRPS, roughly a third of them had no cognitive decline, which is good news right there.

Then, at the end of a paragraph in the middle of the "Discussion" section, the authors commit the stylistic error of "burying their lead" when they just get around to mentioning that "It is important to mention that, as far as we could determine, these patterns of neuropsychological impairment are independent of the spread of CRPS (i.e., number of limbs involved), illness duration, and medication use." (Emphasis mine.) And for what it’s worth, the group with no cognitive decline had the longest average length of illness, which is almost counterintuitive.

As to the remaining 2/3's of the patients studied, almost twice as many had problems just with organizational issues ("executory functioning"), so that of all patients sampled, only 22 - 23% of them had both executive dysfunction (which everyone apparently gets if they get anything) and memory recall issues. But in contrast to the ominous final line of the abstract, "and some patients presenting with global cognitive impairment," the text of the article merely speaks of "a more global profile of cognitive impairment involving reduced performance on tests that assess working memory/mental search (executive tests) along with problems on tests of naming and memory . . . "

And in fact, a subsequent paragraph puts even the memory recall issue into perspective:

The profile produced by CRPS group 3 on tests of memory also suggests the presence of executive (i.e., retrieval) rather than amnesic (i.e., encoding) problems. The delayed free recall for CRPS 3 was quite low, in that on average these patients could recall only 6 of 16 original target words. Superficially, such behavior might suggest a striking amnesia or an encoding problem. However, on the delayed recognition test, patients from CRPS group 3 demonstrated improvement, in that 13 of the 16 original target items were correctly identified. Such behavior suggests the presence of a source recall problem, a deficit linked to frontal systems impairment. [Emphasis added; citation omitted.]

I am reminded of one of the most difficult circumstances of my professional career. Forgive the length of this tale, but there's a point at the end. I had been looking for a new position as a bankruptcy attorney when it became clear that I wasn't going to make partner at the firm I had been at for four years. But while I didn't have any rainmaking abilities, I knew the stuff cold. And when a headhunter put me in touch with a really tony and (then) national real estate firm that was looking for a senior bankruptcy associate, the interviews went beautifully. When the senior partner asked me about a particular issue, it just so happened that I had stayed in my car an extra 2 minutes that morning to hear the end of a continuing education tape, and I pulled the names of two or three circuit court opinions out of the top of my hat. Magically, I had secured a position for which they had been interviewing over six months, and I was ensconced in a beautiful office with a floor to ceiling curved glass wall at my side, in the highest per sq. ft. rental space in all of Los Angeles, doing work I had always dreamed of. Enter the evil head of the newly formed litigation department. One of the guys who had interviewed me. But over a few weeks, he picked up on the fact that I had a slow speech syntax, and one of their biggest clients, a bunch of sharks working for a couple of billionaire brothers from Texas, would eat me alive. And so he decided that I could not be introduced to them, and my fate was sealed. Not because I didn't know my stuff, but because I couldn't get it out as fast as the next guy.

So here I sit tonight. Having recently taken many of the same tests as are referred to in the article, with the same pattern of poor "delayed free recall" but with perfect "delayed recognition." That and an "extreme" 45 point spread between my verbal and non-verbal IQ sub-scores, a.k.a. executive dysfunctioning. And a head full of Leonard Cohen songs.

And yes, I have to fight my way out of a wet paper bag and my wife no longer sees me as her "equal," but I've got the now, and I'm good with it. Guess I’ll be some sort of a greeter for group 3.

Mike

I am happy to announce that Jim Broatch has just put the pdf file of Libon DJ, Schwartzman RJ, Eppig J, et al, Neuropsychological deficits associated with Complex Regional Pain Syndrome, J Int Neuropsychol Soc. E-pub 2010 Mar 19, up on the RSDSA websit at http://www.rsds.org/2/library/articl...ychol_2010.pdf

It's one of the most important articles to emerge in years. Please check it out

Mike

dear Mike,

The fact that it took 6 months to find someone for the position should have headed you off - the guy was likely going to find fault with just about anyone they put in that position. Don't be so hard on yourself. You are awesome!! It was to our advantage that things didn't work out for you there, look what you've done for so many of us here. Please be assured that the effort you put into research and writing is most deeply appreciated!!!!

I am so sorry to read that your wife no longer sees you as an "equal." Egos are always a problem, aren't they? I hope that you guys seek counseling for the sake of yourselves and your kids.

XOXOX Sandy

Several come to mind do they not:

"If It Be Your Will" -1984

If it be your will
That I speak no more
And my voice be still
As it was before
I will speak no more
I shall abide until
I am spoken for
If it be your will
If it be your will
That a voice be true
From this broken hill
I will sing to you
From this broken hill
All your praises they shall ring
If it be your will
To let me sing
From this broken hill
All your praises they shall ring
If it be your will
To let me sing

If it be your will
If there is a choice
Let the rivers fill
Let the hills rejoice
Let your mercy spill
On all these burning hearts in hell
If it be your will
To make us well

And draw us near
And bind us tight
All your children here
In their rags of light
In our rags of light
All dressed to kill
And end this night
If it be your will

If it be your will.