And dystrophy is...

dystrophy

noun
1. any of several hereditary diseases of the muscular system characterized by weakness and wasting of skeletal muscles [syn: muscular dystrophy]
2. any degenerative disorder resulting from inadequate or faulty nutrition

Reasons for Hope
 

CRPS - Chronic Regional Pain Syndrome !

Vic, I couldn't agree more. Without hope life is / can be quite dismal. Thus, the reason for my forum name - HopeLivesHere. It is a reminder of why I am still alive & with all my limbs intact. Hope - a simple word that makes a huge impact on my life. What can be worse than arms, legs, etc that feel like skin ripped off (roadburns), acid being poured on the tender tissues and top it off, the feeling of worms crawling or bugs walking on that tissue, while underneath it all, the bones have freezer burn to the point of also feeling like the bone marrow has been replace with red-hot pokers just taken out of the fire - going through the center of crushed feeling bones.
I have left out the feeling that muscles, especially my forearms, are being tugged and forced to go through a meat grinder.
Someone asked how my RSD feels and this is how I described it.
Worse lately because it has been so long since my last set of blocks. 4 years and counting since therapy. They haven't always felt THIS bad.

Hope and a purpose for living. I bring that up because I want to say that you have an impact on people's lives you may not even be aware of, a kind of purpose for your life that "WE" can see.
We all see you in your recliner, unable to ambulate, get out into the world, yet you POSITIVELY impact the lives of so many.
We all need a purpose or call it a reason to go on living.
It may not seem like a huge purpose to you, but others see it as huge. One's purpose may be encouragaging others, praying for others, cooking meals for ill people who can't cook for themself, or maybe it is "just listening" to others. It means to "get outside" ourself and focus on someone other than ourselves. I regularly talk to a couple people who can't move on or think positively because they can't get their focus off themselves. A high percentage of people on this forum come here not only to ask questions, but to also do "random acts of Kindness.
One that immediately comes to mind is LisaM.
When someone comes here hurting, she is right in there to help.
Frogga/Rosie with her % of disability is such an inspiration.
And it goes on and on and on.................
I've haven't thought of Ochoa for so long, but I never understood why he would be so hurtful to put his ideas on paper. To say this in our heads.
I must have had one of his students as one of my QME's who documented I must have searched the internet, found an article on RSD, and mentally gave this to myself in order to get my husbands attention. That is, of course, not true but it is also cruel to document something you have no proof of. If I was that good of an actress I'd be working in Hollywood in those multi million dollar movies.

I'll be waiting to see how the MS IT pump works for you. I got a denial for that 2 years ago, but that is our ultimate goal. We are waiting for my private insurance and medicare to deny or approve it. Medicare said if everyone denied it they would pay and then go after the people who should have paid in the first place.

Just as a side thought...I wrote to our Senator in Wash DC - told her that the US government was spending a lot of money on
people injured at work & instead of WComp paying disability benefits, they deny us which means Social Security Disability picks up the tab.
How would the tax payers like to know that?
And why is WComp getting away with it?
This is one issue that shouldn't be affected by bi-partisanship.

It is criminal and they should be jailed in my opinion.
I told her it they stealing the taxpayers $$$ and our state reps allow it to continue.
I wrote to my state rep and Gov also.

Sorry - off topic

I agree totally about the dead and knowing Jesus, forgiveness, sins, & being in a better place. AND "Those who knew Sam, Andi, Meg, Sunshine, Heatherdawn miss them and were crushed because as you said RSD didn't kill them, hopelessness did
and that "Hope is the last thing to go &.once it is gone, there is no reason to live."
You tell someone while the hope is still dying, when you want someone to give you some reason to hope This is why for people in the "RSD Circle of Friends" (or any other disease) those who are gifted enough to ENCOURAGE the others have a "Grand" purpose for living. Your life is not without meaning when you impact another person by opening their eyes to "hope" and a reason to keep on living.

I'm sitting here with my eyes closed and the superbowl is ready to start so I am going to sign out. I hope there is clarity in what I said here, sometimes I was confused myself.
Take care all. {{Hugs}} Hope

jo55 or anyone, do you get kicked off if you don't submit your response in less than 10 minutes. I used to take several hours up to a whole day to submit replys like this one. Now I automatically get kicked off and have to sign in again. Frustrating.

How to Thank
 

Hey Claudia!

All you need to do is look at the bottom of the post - on the right hand side - there is a button to "give thanks" - just click on it and your good to go! :)

Hi again,

I am usually a bit more organized, but what I wrote in my last post kinda threw me off stride: I didn't finish my comments about Ochoa, and there are still some things we all should know about this (I believe literal), butcher in a physicians lab coat. I still have to finish yet another post in which I'll present some views on the original topic.

About Ochoa: I don't know whether he is still malpracticing medicine, but if he is, forewarned is forearmed. I have some "abstracts" of "articles" he has written about RSD. They are actually more in the nature of advertisements aimed at insurance company lawyers: showing how well he can testify in their behalf.

If you live in Oregon and work comp orders you to see him for what in Kansas is called an "independent medical evaluation" (IME) [what it really means is intentional misrepresentation of evidence], I will be happy to provide your attorney with a critique of these abstracts.

Ochoa is knowledgeable and good with words, but like all liars his words expose the truth about him. What I wrote about his victims sitting shocked at the end of a hearing really happened to people I know, and I would enjoy doing my small part in preventing this from happening again, exposing his deceit, and paying the S.O.B. back for the damage he has done.

One of those abstracts describes a trip to the land of his birth: Chile. The problem is that this trip occured during the regime of Auguste Pinochet: the most brutal dictator in that country's history, and with the possible exception of "Papa Doc" Duvelier of Haiti, the most brutal dictator in the history of the Western Hemisphere since Spain left the area. He was a nasty man, responsible for the torture and murders of thousands of Chileans whose only offense was belonging to the wrong political party.

(Pinochet came to power with the help of our CIA; overthrowing a democratically elected president "we" (the CIA) didn't like, then murdering him).

Anyway, Ochoa went to Chile. Upon his return, he wrote about his experiences in a hospital ward full of RSD patients. He wrote that during the day, all of them exhibited extreme motor dysfunctions (jerking, falling, etc), but he suspected something was amiss: that these patients might be faking their symptoms.

He described secretly having video cameras installed; lo and behold! In the evenings, after the staff went home, the motor deficits vanished. They all walked around, talked, etc, and no one appeared to be in distress.

There are a few things wrong with this picture. Chile was and is a very poor country, where hospital beds are reserved for the rich, not the needy. Also, it would be difficult to find a large enough group of RSD patients in most cities in this country to fill a ward: Chile is probably no different.

Then there is the fact that RSD patients here are rarely (if ever) hospitalized for movement disorders or anything else related to RSD in this country; a land filled with beds and insured patients.

And Chile doesn't have any worker's compensation laws, so why would people fake a medical disorder? OK, some hospital beds in Chile probably had sheets, which I know are more comfortable than straw mats. But there are other disorders/diseases/syndromes/whatever that don't require as much effort to fake as RSD.

By the way, in this country, staff don't go home for the night leaving patients unattended; they are relieved by other staff. Oh, well, they may do things different it Chile. In fact, you can be damn sure they did things different in Chile.

Ochoa, however, is an expert in RSD and he found RSD patients. Is all this coincidence? Or could it be that he made it all up? That he lied.

Mike can correct me on this, but I suspect that any attorney with two brain cells to rub together would fight like Hell to introduce this abstract and then ask some rather cogent questions of the bad doctor.

My suspicion is that Ochoa went to Chile to have fun. Pinochet would have welcomed an American trained neurologist; someone with a good understanding of nerves and how to develop, refine and impliment even more creative ways to cause pain in his torture factories. I believe Ochoa and he got along well.

I can't prove it, of course, but I would be willing to bet this shiny new computer my son gave me against a bucket of pig **** that none of the "patient's" he saw had RSD.

Like I said, he is knowledgeable and good with words, but someone who understands RSD would be able to blow him out of the water for a change.

Hope, you wrote of having a purpose in life. At the risk of sounding like George W Bush ("God wants me to be President"), I really want to believe that God wants to use my 26 year history of disability from spinal nerve injuries and my 11 years of even worse nerve injuries plus RSD, to accomplish something positive.

He gave me the ability to learn and understand ideas and concepts better than most (we all have our gifts; given my 'druthers, I would have preferred Joe Namath's arm); allowed me to be so badly injured I could never again build a bridge or drive a truck and had to go to college to learn a new career at age 46 (social work, specializing in working with the disabled)

He allowed me to begin my career at a hospital at the same time that the entire social work staff resigned in protest for hiring a new director from outside (forcing me to spend the first three month of my career doing little besides attending staffings at every ward; and learning a lot I would otherwise never have learned about medicine and doctors).

He then "allowed" (condemned?) me to a life where I can do nothing but research or write - or watch daytime TV. (I had already read every book I was interested in at both the public and college library during my first period of disability, so reading is pretty much out).

I somehow stumbled through life with neither plan nor purpose (ok, the plan was to get a union job driving for a grocery store chain, but I ran into an incompetent surgeon instead. Plan 2 was to get a couple years work history at the "nuthouse" then apply for a job at a nearby brain injury rehab), yet somehow got the education and experience I needed in order to research, then write about several distinct areas of medicine that are directly linked to RSD.

My entire childhood was a nightmare: "raised by an abusive, alcoholic step-father so emotionally bankrupt that he blamed me for the fact that his wife had sex with another man before him. It was somehow my fault that I was a "junior"; carrying the same name as the man who slept with his wife.

I don't know how to cry. I don't think I can fully recover emotionally from the damage done by my injuries until I am able to grieve. To cry. But he would punch me until I cried. I knew that all I had to do to end the beating was begin to cry. I would not - could not - give him that. Now I need to cry, but I can't.

As far back as I can remember, my only goal in life was to join the Marines and be killed in combat. I would daydream about this glorious death. I had no use for school. I dropped out of h.s. while repeating the 10th grade. A note was attached to the transcript the h.s. sent to the University (paraphrased from memory):

'Mr Collins has the dubious distinction of having the 2nd lowest GPA ever achieved at this school'. The school was North Hollywood H.S.; which graduated 1,000 students the year I dropped out.

My GPA at Pittsburg (Ks) State University was 3.915 (nobody's perfect - well, almost nobody). I'm really not blowing my own horn. As I said, this was my gift. I could have made a lot more money with a slower brain and a great right arm.

I have a unique combination of education, experience, intelligence, and - most important - lack of awe for medical experts, that qualifies me to write about this disease.

Soon I will have a pain pump that will continue providing relief even while I'm asleep. This means I will no longer lay in a perpetual daze from oral drugs and that I won't wake up in agony three hours after taking my last pill. The last barrier (I hope), and the last excuse for not writing will be gone.

And I have a former professor of neurosurgery who is going to read and criticise my article the same as he did with his students. I hopt to enlist Allen's help in finding a vascular surgeon who will do the same with the parts about ischemia-reperfusion injury.

If God didn't plan it this way, He did a damn fine job of putting my shattered life back together in a way that will allow me to do what we all want to do: help someone else in even more pain than ours.

Blowing Ochoa out of the water is not my purpose in life. If given the opportunity, I think it would be better called a necessay but extremely rewarding and pleasant diversion. We need to enjoy life's little pleasures wherever and whenever they appear...Vic

Nicely put.

Mike