What can we do to assure cp patients are treated well

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NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/11/2011 11:59 AM (GMT -6)   
Ok I read the rules before posting this, but we will see how its goes.
 
To many chronic pain patients are being mistreated and not getting the help they are by law supposed to get.  To many of us are treated like junkies looking for our next fix.  I realize that this does happen sometimes, but we are being penalized for the actions of a few.
 
There must be something we as a whole can do to make the legislators aware of our situation.  I not trying to get people to riot or anything like that, history has shown us the way to get change is thru our legislators.
 
I am wondering if anyone else feels the same, and if so what can be done in a peaceful, serious but determined way to get this on going problem to the people that regulate the laws.
 
It seems to me much has been said in the media concerning the abuse of prescription narcotics, but for those of us whose very lives depend on the use of this medicines for some quality of life, not alot has been said.
 
Is it time that we take to the media, explain what our lives are like each and every day.  We are strong in numbers, you only need look at the amount of persons on this forum to see this.
 
If anyone has any ideas how we as a whole in all states, countrys, etc. can get our message to the people who make the laws.  I know they cant walk in our shoes, but I would bet if any of them had to for even one day, they would come away with a different look at things.  Please know I am not a radical looking to march on Washington, just a cp patient very tired of the treatment we receive, trying to live our lives, having so many disabilities thru no fault of ours, this is the hand we were delt, we have no other choice, it shouldnt be so hard.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/11/2011 1:02 PM (GMT -6)   
Hi Kathy...
 
I like your post.... and agree completely.  (My "y" key is sticking for some reason....so forgive typos, please).
 
I don't know what the answers are.... but I completeley agree and would be willing to support anything to gain better "rights" for chronic pain patients.
 
We are very like-minded.... I can tell.
 
Ahhh, computer driving me nuts.  Will post more later!   But would love to read ideas from others.
 
(Hope you are doing well, Kathy.... life has been crazy... will e-mail soon).
 
--Tina

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 7/11/2011 1:17 PM (GMT -6)   
I have been haunting this forum, unable to do much more than post occasionally, but this made me want to respond right away.

I feel the same way that you and Tina do. You have a wonderful idea!

I worked in the medical field for years, not as a nurse, but in Radiology making appointments, as an MA in a Cardiology/Pulmonology office, and also some time in a major health insurance company as a customer service representative. During my years in those behind the desk roles, I have seen some pretty disgusting things happening to the people who need help the most. You are right, we did not choose the circumstances we have been dealt, but are attempting to make the best of difficult situations with little to no help from our insurances (who are paid to help us!) and sometimes little to no help from our doctors. I remember being told that there was no way I suffered this much pain by a doctor who treated cancer patients, and to stop whining. He ate his words after the surgery found adenomyosis and the sheer number of adhesions from previous surgeries and endometriosis. Did I choose those medical conditions? Its like saying we chose to be born!

I don't have a solution, but am willing to write letters, or listen to any other suggestions out there and do my part to help. This is a worthy reason to contact our legislature and work for change.

Thank you Kathy for speaking up!
Mindy

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 7/11/2011 4:40 PM (GMT -6)   
One thing everyone could and maybe should do is when you see these stories take the time to write to the editor and if possible the reporter and either educate them or at the very least urge them to look on the other side of the issue.

Write letters and make phone calls to your state and federal senators and representatives. Let them know how you feel about proposed or current legislation in regards to prescription medication, chronic pain, etc.

If you read an article online and there is a spot for comments take a moment to register and voice your thoughts on the article itself and/or the uneducated, unenlightened comments that are being made.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 7/11/2011 7:35 PM (GMT -6)   
I am with 100%. There has to be something done for us chronic pain patients. We could write to our local government like senators, legislators, maybe even the president, but how do you get the addresses? I would be willing to do it if I could find email addresses or slow mail addresses.

I live in NY and I wrote an email to our governor for some reason, I can't remember what, but I've been getting emails from his office. So I guess I could write him an email about the situation that we are in.

I think we might make a difference if we all do what has been suggested.

I hope you're all having a low pain evening. My back is screaming for relief, so I guess I better go get some pain meds.

take care

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

snobrdgrl321
Regular Member


Date Joined Jul 2009
Total Posts : 278
   Posted 7/11/2011 8:07 PM (GMT -6)   
I agree TOTALLY

I wish there was an easy fix to the problem, or an easie way to education some people. and to defiantly weed out the junkies!

I would also be willing to write letters or whatever.

Hey, are the CP ribbons still available? What was the outcome of that?
Maybe we should send the ribbons with our letters to congresmen and such? And perhaps.... We could look into getting a national CP recognization day?

Just my thoughts.
Donna
Tethered Spinal Cord~1.5x1.2 cm spinal cord cyst at L5/S1  (Lumbar Laminectemy completed 9/10/09)~Scolosis~Migrains~Leg Deformity~Foot Deformity~Knee, Hip, Back, Neck Pain~Severe Depression~Insomenia~DDD~Artheritis (Spine)~Spinal Bone Spurs~NEW: Herniated Disc T5/T6 
"I'm not going to vacuum 'till Sears makes one
you can ride on"
~Roseane Barr~
 

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/11/2011 9:20 PM (GMT -6)   
Thank you all for your responses, I think the way to go is thru both the legislators in our different states, and the media,  the media to me is partly responsible for how we are being treated now.  They will write article after article about people and the abuse of narcotic meds.  Its time we and we are big, its time for us to tell our stories. 
 
First I will begin writing to all my county and state law makers.  Then it time to hit the newspapers, it would seem time that they get the other side of the story.  Who better to tell it that us.  There is strength in numbers fellow sufferers, lets start writing and talking, people needs to see the truth.  Our truth, so lets get going with whoever the lawmakers are in what ever state you are.
 
I need a moderator please, questions on using the healingwell and the cp forums need to be addressed, so whoever moderator reads this first, please let us know if we can proceed with the names (not of people) but the whole healingwell cp forum thing.
 
I for one will use my name on all and every person who I contacts, we have to put names and faces to some of these stories, the decision about all others of course is an individual thing.  But even if you dont wish to use your name, write, write write.
 
Thanks again to all, hope all are doing well.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 7/12/2011 1:33 AM (GMT -6)   
…morning nini53!

I understand your displeasure of the medical system as a whole when it concerns patients suffering with Chronic Pain. Let me do this for you…I will post the rule that I think you are referring to, and let you read it yourself. While I and many others here agree with you….we have to me mindful that the HW CP forum, and all forums for that matter,… are for personal support, and if I read the rule correctly, we cannot use the HW website for a political agenda…such as the desire to change laws….or something of a similar nature, on behalf of CP Patient's

11. No posts of an overtly political or religious nature OR posts promoting advocacy of particular personal, medical, legal, religious, political, or non-profit causes. The forums are intended for offering mutual personal support. Debating controversial subjects should be taken elsewhere. Limited religious references are allowed (ie. "my prayers are with you" or a brief quote as part of a larger post), but the forums should not be used to convert others.

I think it would be best to contact Chutz, and get her opinion on this. I respect her highly, and she usually has some pretty wise advise to share. Feel free to click on her member name, and send her an email, and I'm sure she will give us some guidance on this.

I hope I have understood your request, and if not, then my apology. Feel free to make it clear to me what you are seeking here, as I'm a little slow to catch on at times! wink

SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Post Edited (Screaming Eagle) : 7/12/2011 1:43:35 AM (GMT-6)


Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 7/12/2011 5:05 AM (GMT -6)   
My take on what nini is asking is if would be Ok to reference Healing Well and specifically the Chronic Pain forum in her letters.

Probably something along the lines of

"I have gotten to know a lot of people who suffer from chronic pain in an online forum that is part of the Healing Well website. ......

========================================================================================
While I do not know what the mods, and more specifically the site admin, will say to this but I do not think this will do much to aid the cause. Writing about your own personal experiences, concerns, etc will help make these issue, well, personal. It will put a face on the it so to speak. If you start referencing forums and such it tends to make it more anonymous and as everyone knows people can be anyone in these forums. This is why online petitions are generally not considered valid.

A hundred single voices saying the same thing is a lot more effective than one voice speaking for 100 people.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 7/12/2011 6:00 AM (GMT -6)   
I have an absolutely great doctor that I see for pain management and he has been wonderful. This past month at my appointment, I told him about the 2 chronic pain forums that I visit everyday. This one as well as one other - not sure if I am allowed to list it.

Anyway, the nurses that handle the prescription hotline are horrible and constantly say things to you to make you feel like you are 2 feet tall or that they are just better than you. I have complained to my doctor about it and he suggested that I call the head of the clinic, I did that and was basically told that she supports her employees and that I was expecting more than what they could give. I was only expecting some respect and courteousness, but I guess that is out of the question.

I would love to write letters. With all of the people in Congress, you would think that some of them have to be in Chronic Pain as well. What are the odds>?

Trudy
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips, hypoxia due to sleep apnea and new problems with my lungs. Have had 2 abnormal CT scans.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 7/12/2011 6:34 AM (GMT -6)   
 
     Jim, I think you are right. I had perposed this before...watching members dealing with SSD a couple of years ago, and if I remember right, I think there was something said about not using the HW name...but with all my poor memory and the med's..Im not sure. I could be so wrong here!
 
       I think if nini53 emails Chutz, she would know, and could give us some advice on it. I wanted to repeat, that I agree with nini53 on it, ...that it has gotten out of hand and we as CP patients are suffering for it.
 
   SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/12/2011 4:32 PM (GMT -6)   
SE, yes you understood what I was trying  to get at.  I am glad I asked before just opening my big mouth.  Thanks that just the clarifcation I needed. I will try to get ahold of Chutz, but I think you pretty much answered my question.
 
I will ask her, if there is no mention of healingwell etc. on a personal level, we can contact our legislators without using he ealingwell, cp forum.
 
Thank you, hope you are doing well, I will check with her and see what can be done, if anything.  But like I said, we dont have to mention healingwell, etc.  We as individuals can write as citizens who are tired of being mistreated.
 
Ok really for the last time, hope you are having low pain day, and thank you.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/12/2011 6:32 PM (GMT -6)   
I have been make aware that there cannot be any mention of healingwell/cp forum when writing to your legislators.
 
And that is fine, as individuals we are a force to be delt with.  I will begin my letter writing to each and all of the legislators in my county and state districts.  I will also be in touch with the media in my local paper and see if I can get some attention paid to those of us who suffer due to the ignorance of a few.
 
So if you want to get your story there, we can make a difference, we just have to be heard.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 7/13/2011 12:29 AM (GMT -6)   
Hi Nini. I'm right there with you 100%. I will be writing to our legislators, congress members, etc. I might even try writing the president if I can find the address. Let me know which newspaper you are going to write to, so I can read your letter or story, ok?

I hope you're having a low pain night. Take care

love and soft hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 7/13/2011 3:12 AM (GMT -6)   
Morning nini53!

I'm not sure if you have emailed Chutz yet on this subject, but I wanted to add and clarify that, I think what is important is that, we cannot represent HW, as sort of an ambassador to the website.
It may be ok to say that you use a support online service such as HW, but again I think Chutz will have the best advice on this.

It's the same with my company I work for….I can tell the general public that I work there, but in no way speak as a representative of the company.

Good luck in your, search, and please do let us know what Chutz says about it. I'm sure Peter will have a thought on it as well. but we prefer you check with the moderators first, as the admin (Peter) is a very busy man.
I'm the neophyte moderator, and still learning the ropes so to speak, so Chutz is a good resource, and always has been. I think she was the first moderator here on this forum, when Peter started this up a long time ago. She is well respected here.

Again Good Luck, and I understand the fire burning in your soul on this matter.

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Post Edited (Screaming Eagle) : 7/13/2011 4:24:55 AM (GMT-6)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9661
   Posted 7/13/2011 9:04 AM (GMT -6)   
I don't know if this is what you mean Nini, sorry if I miss understood but it's my opinion:
I think that if the government can makes use have to pee in a cup to prove we are clean
and doing our medicines correctly then insurance companies should have to pay for this testing at 100
percent, and that if you do pass it then you should only have to do this testing once a
year. It's not right that the government can dictate testing to us without it being fully covered
by insurance period... and that if we do pass then I want better treatments from doctor's as well.
I passed my testing but insurance did not pick up the costs for this test at all and I was forced to pay it.
and it was over $130.00 which I could use back for other medical expenses and that we should
be able to write off more medical expenses on our Taxes...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/13/2011 1:57 PM (GMT -6)   
Ok I have e-mailed Chutz, nothing yet but I am sure she is looking over any legal ramifications of using the names HW or
cp forum.
 
Trudy I think you probably hit the nail on the head as it were, someone, somewhere of all the legislators out there be they big guns or little guns, some of them have to have health issues similar to ours.  I mean lets be real, alot of them are much older than me even, at 58, what wasnt hurt originally is now in line to have all kinds of arthritic, osteo, etc. problems.
 
I believe with or without the use of the names, we are strong in numbers, as individuals we have all suffered at the hands of people whose first thought is "junkie looking for drugs", I remember passing out from dehydration years ago, as I went from doctor to doctor the Social Security people sent me to.  It was 90 some degrees and 100% humidity, I passed out at a bus stop.  Someone was kind enough to call 911, when they got there after giving me sips of water, someone asked me if I was taking meds, and what Iwas taking, I whispered I was taking methadone ( if was pill form, prescribed by my doctor, but I was not able to say that much), they quickly turned both my arms over, looking for track marks, prior to that the put gloves on in case I had some horrible disease caused by the drugs they assumed I was taking. From that moment on they treated me like trash.
 
Of course when I got to the hospital and was aware of what was happeing to me, talked to a doctor, explained what was going on, my treatment improved 100%.  I think what bothers me more than anything, what if I had the disease of addition?  Does anyone deserve to be treated like they are not worth much, why treat them, they are just junkies.
Guess what, those "junkies" are somebodys mother, daughter, sister, grandmother, dad, brother and on and on.
 
Sorry got off subject there, so with or without HW, cp forum, I am beginning my campaign of letter writing from my county excutive, on to my congressperson, senator, then I am going to the media, I happen to live 20 miles from the nations capitol, The Washington Post will be my first stop for the media, from there local news stations are always looking for a story about the "people" who have been put upon my the big bad government.   Well I can look very pitiful without even trying.  Sometimes I am quite pitiful, I try very very hard not to feel sorry for myself, I always tell myself there are others out there worse off than me.  We all found each other hear, we just need to take our stories out there, show people we are the ones who suffer due to the few who do play the system.  I am sure there are more of us truly suffering due to chronic pain then the people who suffer from the disease of addiction.  Maybe if they found a way to treat addicts differently, these two paths would not even cross.
 
Ok lets go out there and write, I am not going to wait for an answer about using HW/cp.  This is the reason we all found each other, but we are the people who suffer.  HW/cp they just introduced us and I am forever grateful for that, but I will in no way use the names of the very reasons we know each other, we dont have to, we all in some way know each other.
 
 
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson
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