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Still "Test Dumbies" Aren't We?
as long as there has been a diagnoses:
RSD, or CRPS Whatever.... I've been in this "Circus World Since 1983".. Has anyone here been there this long? (I'm NOT trying to set a record, just trying to see that we agree)? I have a friend or two that have had it a long time, and YOU are many of them. Yet, Don't it still seem that, we need to "Search Out" doctors who are knowledgeable about our malady? Don't it seem that when we find one who is "knowledgeable", that we still are on a "wait and see" basis? Still Kind of "Test Dumbies"? When will this change? What we do, is Not Only for Ourselves, but for those who come after. Understand, If I were the "One" with RSD, I would never wish it on my worst enemy (and, I've made it a point, to have none((enemies)). So then, what are we to do? WE must be STRONG, And CARRY ON! From E'Clapton's song, "tears in Heaven", We don't belong here, in heaven... It's NOT as if we have "High Blood Pressure", or, worse, Even let's see? Um. Colo-Rectal Cancer? If you have one of those.. You get "rushed in to a drug regimen" , OR Into surgery and Chemo. RSD/CRPS, Nope. We're still "Testing" the waters... And, some doctors want to write that "ultimate Paper" on it. We see that on the Net and, we appreciate it. It "Validates us". But, this Bastard of a disease (sorry Ali), (My heart goes to you, mostly, our child!)~! is just that! It hides. It changes shades. It changes faces, and it changes "symptoms". We must keep a "journal of pain" to take to the doctors, because we get "RSD BRAIN". We forget Every thing when we're "On the Spot"! (Our Attorneys had better understand that too!) How the hell do we know how to describe it? We have RSD BRAIN! So then, let the suggestions begin! (I hope and Pray, that this thread will last, a long time!) First I'll say this. Once you, YOU decide that you have this, (I knew before ANY doctor diagnosed me, back in the 80's, thanks to a brochure from the rsdsa.org) (Consider them in your will, for a small percentage, and ask your family as well!). Back to the point,..... Uh Oh! rsd brain! In 1983-1989 (my diagnoses) 7 Years for a diagnoses. Thought I was losing my mind. I grabbed Dr Schwartzman, and hugged him. I was in tears, not so much because I was sad to have this despicable disease, but, to know I WASN'T LOSING MY MIND! (As those closest to me, would have made me think). And, those are all long gone!! Part and parcel of this disease... We are at a beginning inception, conception, origination, genesis, emergence, starting point, launch, outset, Oh! Did you see I checked my Mac's Dictionary? Thesaurus? I did. So, I thought I was near the beginning in '83, what I realize now, is that not much has changed. We've got to go to RSDSA.ORG and Buy those T shirts! Bumper stickers! Posters, whatever the hell they've got! Nobody knows what "RSD" Is! Hell, we can't even decide what to call it!!! Craps or RSd!/???? HUH? So folks, WE have GOT TO MAKE A GROUND SWELL MOVEMENT NOW! NOT LATER, NOW! It's Up TO US, TO EDUCATE THE "dumbpublic" about RSD! I've studied "marketing." Do you know how many times a person is "bombarded" with a single "slogan, or Logo" everyday? Just to get them to remember it? iPhone Windows I Love It! Like that.... How can we "Break RSD Out?" Just keep wearing those "Hip" clothes, and bumper stickers, and we've got to call on the rsdsa.org not only to buy those things, but to bring us MORE! I WANT TO WEAR A POLYPROPYLENE T SHIRT THAT HAS RSD PRINTED ON IT! EVERY DAY! That's at least 2 shirts ! (Haha teasin'g didja get that?) I need 6-7 at least! I vote that we ALL buy 5! OK, 3-5. We do wash. But, we've gotta propel this MONSTER into the public's eye~! Thoughts? p |
Great stuff Pete.
I'd like to recommend that everyone here add the link RSDSA to your Facebook or Myspace account. I did so and asked all my family and friends to donate to them. Perhaps we could even consider adding RSDSA.org to the signature of our personal emails for an even larger ground swell. Thanks for the inspiration! MsL |
That's really easy to do.
If I were smarter, I'd show ya'll how ta do it! But the RSDSA.org is All Over My Facebook page! Thanks, MSL! we've got to keep this going! I'm going to send this entire thread, to my doctor (The GREAT Doc KNOBLER), and to those "close" to me..... Please, contribute your thoughts...... P |
Bravo, Pete!!!
Once again, you have made me smile:D as I feel inspired with the way that your words come alive on the blog. Bravo!!!!
I am 2 yrs & 2 months since my first injury that manifested into RSD/CRPS I. My PM doc has helped me with the pain;however, he is not up to date on the fact that RSD can spread. That makes me worry, as this doctor dictates reports on my condition and then sends them to WC, and my atty. If RSD doesn't spread, what does PM doc think is happening to my uninjured leg, both hips, spine, shoulders and hands???:confused: It is very frustrating to say the least. If only the ignorant medical profession, for ex.,a MD,or a WC atty., could enter the RSD Twilight Zone for a 30 min. episode. http://dl.glitter-graphics.net/pub/1...eit5caw0jt.gif Specifically, that a MD and a WC case-manager/atty. could be RSD patients, and experience the medications with all their side effects, stages of misdiagnosis, painful stages of RSD, and the doctors that look them in their faces, and tell him/her.."it is all in your head"...don't you think there would be an increase in research and development for a proper diagnosis tool, and then a cure??? THAT WOULD BE CRUEL AND UNUSUAL PUNISHMENT......:thud: GREAT POST,PETE:yahoo: |
Hey Pete,
One of the things happening in OH is a Education and Awareness Bill. I had the opportunity to testify before the senate last fall. The sponsoring senator resigned and his replacement allowed the bill to stall. I think we have him back on board and he is going to start the process moving again. If you live in OH we could use your support. You can PM me and I will give you the contact information for the sponsoring senator. Some states already have passed bills if yours hasn't you can contact the RSDS association or PM me on how to get started. The RSDS Association is worthy of all the support they recieve. Take care, Sherrie |
At least you're passing awareness bills! That is something!!!
Where I live, this odd tiny itty bitty part of Europe (Belgium), they are so behind in everything they're still using the wording of some 50 odd years ago when "it" was called "algoneurodystrophy", and when even less was known about the condition. It certainly wasn't an accepted physical condition then - but nothing has changed! The laws about refunding things to disabled people didn't move along with the times. That means that people are pretty much on their own when they get this or any other kind of disease. Only 6 pathologies are okayed in the healthcare law, if you get anything else, or are in an accident and are injured pretty badly, you fall out of the net and are left to get your aids yourself in any which way possible. It's far worse than having just RSD added to the picture here, far far far worse! |
Hey Marleen,
I'm sorry disability care in Belgium is so far behind. The stress that a chronic health condition puts on a persons finance's is hard. Several months ago my insurance company tried to cancel my benefits. They said my condtion is mental not physical. They only cover mental conditions for two years. All my doctors wrotes letters documenting it is a physical condtion my benefits have been extended. I'm still being covered "Thank God". I have been denied coverage by the governments social security. Like most everyone else I had to get a lawyer he is working on getting me approved. Take care, Sherrie |
It really seems to be a sad state of affairs. Some of us get treated like "Lepers", by the medical community itself! Those who are responsible and in the business of taking care of us. Then, when friends and colleagues are disbelieving, that just rips me.
So, just that we can wear a T-Shirt, gives more credence to the fact, that a thing is true, and real. Maybe, we should advise any new-comers to wear an RSDSA.ORG T-shirt to their Doctor visits? hah! Yep, time to order a new t shirt! pete |
I agree 100% with you pete! That is such a great idea!
I have had RSD for 7 years now and it took doctors to dianose it 3 years. If that wasn't a living hell for 3 years of not knowing. Now I know and i still don't feel any better. I have denied disability in my neck of the woods 5 times and working on a 6th time of trying. I have had umpteen docs tell me that rsd cannot spread. I know that it can do to all the research on the internet and reading books.I want to know everything out there that is to know about this monster of a disease that is not suppose to spread! I am so tired of docs and there high degrees saying that it can't spread! I don't care if they think they are all high and mighty this is OUR lives they are messing with NOT theres. I am willing to buy t-shirts,bumper stickers, magnets and whatever else there is out there to try and make people aware of the disease. You might think that I am crazy but i did buy the little spoon pin for the "Spoon Theory" which I think is really neat. If any of you haven't seen the "Spoon Theory" you really should take the time to read it, it makes you stop and think and it made me cry. I feel the whole thing is true. I carry the spoon pin on my purse and a lot of people wonder why I have it so I explain it to them in short term and if they want to know more about it then they can go home and look it up on the computer and they will then see why I think so highly of the spoon and how it is associated with our disease. Thanks again for the inspiration Pete! Keep the GREAT work up! |
My contribution to the "gettin' it out there" and education of the masses is through what I do best, writing! :-D
I started my freelance writing career 2 months ago, but have loved writing and have been writing my entire life pretty much. I publish articles on an internet site. So far I have written 7 articles on rsd with many more to come. I have 2 more I did today which it looks like I'll be submitting tomorrow. :-) I've had a couple of people leave comments that they had never heard of crps before(no surprise there)and they stopped in to read my articles and learned something new. (I do not use the letters rsd, I use crps. Reason being is because that is the "new" name and has been for 14 years now.) I'm a long way away from running out of articles on rsd, so I will continue on educating the masses one person at a time. Hugs, Karen |
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I would love to read your articles and do what I can to help support you. Please share your links with us when you feel ready. MsL |
pete
well said it does get old having to explain this and never being able to get out what you are tryin to say. thanks for takin the time to write this out.. you get a gold star!!!!:Thanx: carrie |
No Carrie, No Dew.
(I love ya both)! No to all of you unless you have a good idea, OR will follow through at least with a 'standard' , hey? We're Not Born "Marketeers'." I was educated as one, as for my own business's. But, not quite sure how to "Market" RSD / CRPS< (see, I can't even settle into calling it one thing or the other!) I prefer, RSD. It's what I "came up" with. CRPS, sounds and looks like "craps" to me, and, doesn't mean much more. NEITHER, DO THE JOB! I'll think of something, with my great doctor, (Knobler). Unless Ya'll do first! I don't want no dam gold star! ((s0rr7y).... But, what I DO Want, is this...... A UNIVERSAL WAY FOR THE PUBLIC (those stupid, wondering what's up, pokey eyes)... They're WONDERFUL PEOPLE!! THAT THEY CARE!!! YET, WE Don't know what the heck to tell them! In one, symbiotic movement! Why Not? Are We going to Wait on the Medical Society? (Those BumbleFlucks who have let us down so often) Before? No. I say. WE've got to come up with something Better, Ourselves! I don't know what it is, I just know, that there's something better that can "IDentify this malady" to those who are innocent of it, and, explain it, in one fell swoop! Yea? Yes! Universal Reflex Pain Syndrome (URPS) ,,,, Nope. (sounds like an apologetic burp). RSD...... RSD, is, still Ok... CRPS.... sound too much like craps. Reflex Sympathetic Universal..Spreading Dystrophy. (RS/USD)., Perhaps the closest? I like this one. RS/USD. Sounds kind of patriotic. huh? Maybe I'll drop a seed here.... Let's think shall we? Because, I think these "Doctors" of ours, have enough work on their hands, trying to figure it out, Let alone "NAme it!"!! Hey, WE've GOT IT! WHY DON'T WE NAME IT? of course...... it's gotta make sense in the medical society..... Work with your docs folks... I'll work with mine... RSD is Old.... (I still like it) CRPS Sounds like craps. (I don't like it). What ever we all come up with, it'll be great with me, so long as we "thought it out"...... Love ya'll! Pete Asb |
Thank you so much for your words. I will admit it made me feel very good. :-D
This is Karen's Article page where all the articles I have written so far are at. If anyone should choose to do so, you can subscribe to me. You will get an email every time I publish a new article. If you're unsure how to do it, pm me and I'll tell you how. Sometimes the system is glitchy so if you like what I've written, bookmark the page. I really hope the above doesn't sound like I'm being pushy or promoting myself. LOL I intend it to be informational not promotional. :-) Hugs, Karen Quote:
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Oh, Jeez....
I see I need to apologize to DEW, and Carrie! (I'm sorry Ladies), and to anyone whooooo was tryin to help. RSD doesn't meant alot nor does CRPS to those "who don't know". It's not like "Cancer". That demands attention, and I don't want to "compete" with that. RSd is not life threatening to that extent. However it IS Completely Quality of life threatening! And, can do lots of harm. These doctors (who don't have the disease) aren't the wisest. My doctor has had RSD, so too has his wife. (along with 'C'). This couple "gets it". Yet, they're too busy helping everyone, to come up with a new name... I think I may start using "Rsd'd" (rusted) to my docs office staff, and others might use "Craps", yep, craps, for what they discuss on the phone with office staff. These office staff I find, are usually ready for a good joke. The point still is, We're Test Dumbies! Not as "Dumb" as we were 20 or even 10 years ago. My Doctor is GREAT! But, he's had a heart attack, and is slowing down. I trust him of course, with my life! He trusts me, as well. And I appreciate that. I cannot let him down! He doesn't use me a a "test dumbie" as another famous Dr from Philly does. My doctor is more conservative, and I'm a tough case, with the tbi, and tos, and sleep apnea. We Each, need to carefully step back for a moment, (in the docs office) before we leave, (EVen if we must ask for a moment or two), to consider everything we've heard, been told, so we can think of, and ask, appropriate questions, (You can always ask a simple one... such as what side effects will I experience, and when Do I need call?), but for bigger things, ask questions! They don't just automatically tell ya! I think it's VERY helpful to take a friend, INTO THE OFFICE! If, for no other reason than this. So that this friend, will go on and communicate with others, about the "treachery" of this Monster!, and just get some dialogue going! OK, Good nite, Carry On! Pete |
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I agree the RSDSA is a great organization. I went to the annual conference a few weeks ago, held here in Scottsdale AZ. It was all day,135 attended, the Founder, 3-4 Drs. & Scientist. It was videotaped to be offered thru the RSDSA later. The following day was for the Drs. therapists, etc. I picked up several pamphlets etc. I'm going to write and buy-ask for several to pass out, for instance a couple weeks ago I went in for a blood draw. The first office had just closed, but opened the door my girlfriend asked if they could just take me, as how difficult it was for me to get in. I asked the two nurses if had heard of RSD and named it outright. They said no. I gave them the spelling, but howmuch better to have the brochures with me to give to them. They didn't let us in, so we went to another lab before it closed. I asked for the senior nurse and a bufferfly needle and we discussed RSD. Both nurses had never heard of it. How great it would have been to give them both a brochure. So needless to say, I'm ordering at least 100. and going back. I will have them with me, dentist, all drs. etc. My next door neighbor is a Medical Dr. till he got C a couple years ago. He and his wife always ask me how I am. He now teaches medical students a couple days a week. He asked me if I would like to speak to the students about RSD and I said Yes. So I'm going to make an outline, hopefully intelligent, and speak to his fall class. Last year there was an national educational meeting regarding RSD in Phoenix. I wasn't able to attend. Education of RSD in the medical schools, laws passed to accept disability and assistance for treatment like HBOT added to the list of accepted treatment for the insurance companies. My Dr. Neurologist is building to new clinics with a HBOT in each of them. I gave him a marketing tool we use in our business to promote the HBOT. My husband and I have owned our own business for 42 years, so we have a little experience in growth and various ways to make that happen. This latest bump in the economy has affected our business, so I need to get some people we've hired organized and get out their and get some new coffee jobs. As we all know how expensive this disorder is, we need to replace the jobs we lost over the past few months. I pay my Dr. cash-$250 an hr. and the HBOT will be cash too, plus insurance doesn't cover the new treatment I'm going to start to help with the 'heat' body and hopefully get me sleeping a little better at night. It's hormone replacement therapy by bio-identical hormones thru a compounding pharmacy. Anyway, my personal opinion is to add RSD to educational program for medical drs. while in school. way way way too many Drs. have never even heard of RSD. Thanks Pete for the interest in getting the word out. I went undiagnosed for 4 years, misdiagnosed for 1 plus years, then flew across the country to a group of sports injury DRS. and wah=la 1 minute got a RSD diagnosis followed up by nuclear med test, next day started therapy, Doc ordered Tens unit and came back to Arizona and got a good neuro and ortho and got into therapy. Have full body also like yourself, plus trigeminal nerve disorder, and fibromyalgia.. It's no easy, but I am very grateful for the many years of good health and being able to do so much with my husband and daughter. She was 17 when I got this, so packed in a lot while she was growing up, tennis, horseback, water skiing, snow skiing, traveling, aerobics, swimming,and am so thankful for those years of health while she was growing up. Thanks again for the boost in getting the word out, it surely will help others get diagnosed sooner. They said at the RSDSA 50,000 persons a year are getting RSD, more children and young people than before in US. Your friend, loretta:) |
Pete -
Following up on Loretta’s suggestion, the guy to talk to is Jim Broatch, the executive director of the RSDSA. He's readily available, completely connected, and the theme of your thread is one of his primary missions. Here's the complete contact info for the RSDSA: RSDSAThe other group that might be worthwhile reaching out to is the American Board of Pain Medicine, the über pain doctor organization I mentioned in another thread http://neurotalk.psychcentral.com/thread87978.html. However, the only contact information on their website is: To request more information about ABPM or to provide feedback about this web-site, please contact us: info@abpm.orghttp://www.abpm.org/ I can't even find the name of its executive director on the website, but that's not unusual for medical societies. I would, accordingly, suggest that you pick up the phone and introduce yourself to Jim Broatch, who's a really good guy. He would in turn be able to give you advice as to how to approach the ABPM, whose interests could only be served in greater public awareness of CRPS, as in encouraging more medical students to pursue residencies in pain management. And about CRPS, sorry, I think we're stuck with the name, that is until it is no longer a "syndrome" and there's general agreement in the scientific community on its etiology and maintenance. My guess is that's at least 6 -10 years down the road. Mike |
I think one of the reasons RSD/CRPS is so tricky and often hard for the medical community to understand, is because no one case is the same and no one treatment works for everyone.
RSD/CRPS effects everyone in different ways. I have RSD/CRPS in my Belly and my legs. My belly was as a result of surgery and was diagnosed within 6 months of the surgery. My legs, not so much. The RSD/CRPS in my legs is from broken bones and took 6 years to get a proper diagnosis. My RSD/CRPS also effects my immune system. Ditto with the treatments. For my stomache I CHOSE to be a test dummie of sorts and tried a relatively unknown and unconventional treatment that my neurologist suggested : Botox. It was so worth it. Botox changed my life and made my stomache pain go from an 8 to a 4, with occasional flares, as long as I keep having it done every 8 weeks. It isn't for everyone, but I was at a point were I was willing to try almost anything. At the time of diagnosis, I was a young military wife living in a foreign country with a deployed husband, no car, etc-- the "world was on my shoulders per say". So, Botox was worth a try. As for my legs--- we're still working on those ! I have some sort of blocks scheduled for later this week. My pain levels start at a 4 each day and peak at about an 8 at night. Effects my sleep A LOT. I am also on some of the more "traditional" treatments : Neurontin and Elavil. They help keep with the nerve pain, allodynia and "hot" feelings. My drs and I are constantly playing with the dosages of those-- too high of dose and I am a zombie with no memory, too low and my pain sky rockets. As for doctors and medical professionals-- I've run the gammut of good to horrible. My wonderful neurologist overseas diagnosed me-- he was knoweledgeable and helpful. I moved back to the US and my pcp and first Neurologist was clueless and not compassionate. VERY, VERY frustrating. I was referred out to a Pain Management specialist. He was OK, but took no time with me and offered no explanations or reviewed my case. Big red flag. Very Frustrating. I got a new neurologist--- I am seeing a neurologist for my epilepsy, she knows about RSD/CRPS, but doesn't want to treat it-- she prefers to stick to treating my seizures. Switched to a new pain management dr--- he and his team seem to have a much better grasp on RSD/CRPS than my first PM dr. But, they are affiliated with a major medical center. I am still getting to know them, and their philosphy so it will take time, BUT, at least they are treating it. Sometimes you have to pick and choose your battles. Treatment or complete understanding ? It can be a tough call, but I'd rather have treatment and some understanding vs nothing at all. Just as drs have to be willing to step outside their comfort zone and be willing to learn, so do we as patients and be open to trying new things-- even if means being a test dummie from time to time. :) L2L |
Acronym for the Movement of RSD Awareness?
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for your kind replies. I agree, I don't think we'll change the name within the medical community. Heck, when did "Patients" ever have any big deal with their treatment, let alone naming the disorder... That's their game. Just maybe an Acronym, for the "Movement of Awareness"? I would think a great acronym would be P.A.I.N. Now, what the heck does it stand for? :confused:;) or... People Active In Neurologic Studies... "PAINS" that could involve not only us, but all supporters, medical folks, family. As, "I'm In PAINS" with some catchphrase...(subject to change maybe)? Good for a T-shirt, bumper sticker, etc. Ideas? YA'll are great! pete |
This AM
I woke up this morning, (and, the mornings seem to be getting later and later.) :mad:
And, well the Sun cam shinin' down.... That would be the end of the story, but, I reach for my pain meds (take 20mg. methadone), and relax, turn on the tv. Then, I coughed a couple, few times, Manly kind of coughs, I don't smoke, so I wasn't yakin'! Just coughed from the water I drank... WOW! :eek: From my Ears to my fingerTips and Back! Electric Shocks, Pain, Numbness! All at once! I know, if you tell a doc you have "pain and numbness" at the same time, they look at you like satan! But, yea, it just seemed to "echo" up and down me arms! All I could do, was let them lay down. Until it calmed down. This, is what TOS is all about, or part of it. Ouch! I love to wrap my arms around a well, nevermind, oh yea! A Big fat pillow! Works for me! :winky: Anyone else get this, with the rsd, too? pete |
Thanks
Hi Pete,
Thanks for starting this post. I did add RSDSA.org as part of my e-mail signature. I hope/pray it does educate some people out there. Kate |
ok i know im late in this post but been away a couple days. no need to say sorry i know what you mean. i dont crps either it sounds stupid. and your right RSD isnt like saying CANCER . you here that ad people know what you are goin thro .. RSD nothing its like saying hey pigs are flying. (maybe not the best anaolgy but thats all i got )
yes i trust me doc and they only do what i ask other wise i am managed like you talk about. unless its like how it is now. and i ask them to try something that isnt meds. i dont like to take meds and im horrible at it period and everytime i take something new something bad happens i think that this is a great post because you are able to put into words what most of us are thinking thanks a billion carrie |
I think,, that unfortunate as it is, our friend "DEW"s problem's with the Opana is more indication of this "test dumby" syndrome, that our docs and ourselves must deal with.
It takes so dam long, often just for a proper diagnoses. Then, it takes so dam long, to find out what is the proper course of treatment, and to "fiddle" with it, and get it tuned to our "ever changing" bodies age and conditions! Besides pain, we adjuncts for the "main pain reliever". then, we need something for anxiety, that life or pain causes. then, our sleep problems. Then, our groggy problems. It just goes on and on. And, if you have TOS, TBI, discs, depression, and on and on (that's just me), the fun really starts! Finding the right doctor is like a needle in a haystack! Then, so often we need an attorney.. Then, we have disbelieving family / friends... then...... :grouphug: Sorry if I'm repeating my rant... pete Asb |
I think even with the right doctor, even if you have a knowledgeable doctor, that it isn't obvious to treat RSD - at all. It is so fickle a disease in itself that we can't be other than "test dummies" (I've started to resent the words). Far too little is known about the condition. So what can be done? It is trial by error. No more, no less.
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Also that is why I never decide on a treatment that day or the next other then a med. I go home process and then make my informed choice. If I did everything I have been suggested I can't even imagine the state I would be in and don't want to.
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