Saturday, September 12, 2009

Sometimes I feel like pulling my hair out


I will explain my title shortly, but first I would like to thank everyone for their comments. I had planned on giving up on my blog. I have been at this for almost 25 years, calling and writing congressman and senators, join other organizations. You name it I have done it. Of course like everyone else I am getting older, the pain is getting worse along with other problems, so after the post in February, I said to hell with it.

Then the comments and e-mails started coming from everywhere, so it gave me the courage to start making entries again. I know it will be through tears at times and anger at others, I will try again. For that I have you to thank, so I will continue as long as I can.

As for as the title, Sometimes I feel like pulling my hair out . We have now gone to 78,000,000 million people like you and I, living in CHRONIC PAIN . Are we any closer to getting help? HELL NO. If anything we are further away than ever. We all know the situation with the medical community. Most of them have opiodphobia which in itself is a mental illness.

A couple of months ago my primary care DR. that helps me, looked at me and said, you don't look right. I replied that I didn't know what he was talking about. He said that my eyes had bags under them. I replied that I didn't get much sleep the night before. He then said, have you been drinking? I said drinking, I don't even drink. I reminded him that I told him that I didn't drink on my first visit to him. He said would you be willing to take a drug test. By this time I was getting mad and I said Dr. knock yourself out. Take all the tests you want to any time you want to, because you want find anything with the exception of what is supposed to be there. So he sent me down for the test and sure enough he found nothing. The next visit he apologized. But that is the way I live, from visit to visit and I am sure most of the rest of you do also. I don't know about the rest of you but I am so tired of living like that.

Wouldn't it be nice if we got half the amount of good publicity as the drug dealers do bad. I don't know why the news media has to make everything about us so negative, but they have succeeded scaring most of the Dr's. in the nation to death. If that wasn't bad enough the average person feels the same way. I JUST WONDER IF THE THOUGHT EVER CROSSES THEIR MIND THAT THEY COULD BE THE NEXT PERSON TO BE IN CHRONIC PAIN. Even my own family has made statements about me getting addicted to opioids.
I was talking to my sister a couple of weeks ago and she is a registered nurse. She said what you need to do is get off of those old narcotics and starting some exercise and you will feel better. There was dead silence on the phone for a while. She asked me if I was still there. I know smoke must have been coming from my ears.
I said yes but I cannot believe that you would make a remark that STUPID. I said, how many times have I told you that I can't even get out of the bed most days without taking pain medicine. I cannot believe this country has been brain washed to be so cruel to poor people in unbearable pain but they do.

Well I have to go. I am to angry to write any more.

24 comments:

shell87 said...

hugs.
this got me teary a little.

i have never been asked to do a drug test, and for me thats a good thing since before docs started taking my pain seriusly i would use weed to help with my worst days (the days i couldnt stop throwing up due to pain, couldnt keep any pills i was given down, and could not move at all)

one of my docs now asked if i was still smokeing, i said no since i only ever smoked when there were no other options/couldnt keep down pain meds. It was funny when he asked, since this is not one of my main docs at all, but is odly enough one of the most usefull ones. He asked not because he didnt aprove, he asked because he doesnt like me smocking it, he wanted to sugest using a vaperizer or something.

i get the remarks about addiction, even from my pain doc who told me to go off my demerol (and i did for 5weeks) even after. acturaly any time i complain i still dont have my pain under controll i get rewarded with "your addicted..." so frustrating. i think i once yelled at him "you are right, i am addicted to NOT being in PAIN!"

As for family, my dad things all i need is to get out and get exercise and i will be all better. In part perhaps its because i worked as a labourer years ago and i felt better then. Though he doesnt reolize i was feeling awsome those days, thats why i got the job, not the other way around.
I to ofen need aditional pain meds to stand and do dishes (though life has far improved since i got myself an amazing dishwasher).

christal said...

I just wanted to say I love your blog and I too have been suffering from severe bilateral pelvic and leg chronic pain for 11 years. I feel your pain and just try to take one day at a time. I too just started a chronic pain blog at www.christalballard.com. Feel free to take a positive quote from blog to help u feel better

Jeannette said...

Oh boy... how I could have written your words and the 1st posters comments too. Only those that go through 24/7 suffering ever truly "get it." My husband initially "seemed" to understand but now after several years of it just doesn't seem to care anymore and has more than once given me the "addict" line. Sad part is, all we (sufferers) want is to be out of pain-period! I don't want to take all this crap just to get out of bed but it is reality. Sometimes he even gets angry at the amount of time I am on my laptop...but between chatting with those that understand and researching methods to better control my pain, that is where I need to be.

I love being able to come to sites/blogs such as yours or others in the same boat and not have to explain myself. You just know, you're there and you understand. Thanks for allowing my little vent. I will be back again soon:0)

PS You sure have your blog name right on the nose-chronic pain is certainly a NIGHTMARE.

House said...

Sometimes the pains is reflected of which something this badly, is a warning of some ailment which we pruned to suffer. Sometimes we felt a pain in the waist and one this of the kidneys thinks badly that. These pains are deceptive and sometimes the due importance does not occur him. It is why he is recommendable to be made a medic control to be able to recognize the ailment that causes to east pain and power to fight it suitably. the pain waist, that can be acute or long play that can return chronic actually medica it is known like the lumbalgia. This is an ailment that attacks million people in the world, according to statistics 70% of people have undergone it at some moment of its life, well said by the last findrxonline bill being debated at this time.

Tami Strand PRN said...

Sep 22, 2009
WHEN COPS PLAY DOCTOR – How the Drug War Punishes Patients
Reason.tv – Videos

The steady stream of celebrity stories about prescription drug abuse makes Americans keenly aware of the dangers of overdosing on medications like OxyContin and Vicodin. And from President Obama’s Drug Czar to California Attorney General Jerry Brown, politicians are calling for greater power to monitor doctor-patient relationships in order to fight the “epidemic” of prescription drug overdosing.

But maybe the real epidemic is underdosing. Countless Americans suffer with severe chronic pain because doctors are afraid to treat them properly.

Michael Jackson’s death unleashed a flurry of media stories about all aspects of the pop star’s life, including his alleged prescription drug abuse. On the same day countless millions watched Jackson’s star-studded memorial service, reason.tv interviewed another musician.

Se├ín Clarke-Redmond, a man who enjoyed an active life before the neurodegenerative disease ALS, often referred to as Lou Gerig’s disease, rendered him nearly immobile—he can no longer even play the piano.
The disease also left him in almost constant pain. Redmond is prescribed some medication, but not nearly enough to keep his pain under control.

Dr. Frank Fisher says Redmond’s case is an appallingly common one.
“Chronic pain in America is an enormously under treated disease,” says Fisher, a Harvard-trained physician. “It’s a public health disaster.”

Pain specialists like Fisher and patients’ groups like the Pain Relief Network battle law enforcement officials who are forever on the lookout for “pill mills” and patients who misuse pain medicine. Fisher notes that the same medications so often associated with celebrity addiction are the same medications that combat pain most effectively.
Fisher has treated his patients with high doses of opioids-that is, until a swat team raided his clinic and threw him behind bars.

“They were trying to give me 256 years to life,” says Fisher who argues that fear of prosecution often prevents doctors from treating chronic pain patients effectively. What allows doctors’ medical decisions to be overruled by police?

“What we’re dealing with is a mass insanity,” says Fisher. “We call it the war on drugs.”

“When Cops Play Doctor” is written and produced by Ted Balaker and hosted by Nick Gillespie. Director of Photography is Alex Manning, Associate Producers are Hawk Jensen and Paul Detrick.
Approximately five minutes. Scroll down for embed code and downloadable versions.

http://reason.tv/video/show/when-cops-play-doctor
Hi Jer,
Good work on your blog, thought this might interest your readers and perhaps they might comment to Reason.tv. and share on the web. We need this desperately.
Tami Strand
Pain Relief Network

Lady said...

Dear Jerry,

For 28 years I have had pain for 24 hours a day, so when I read your words, I hear my own voice speak. I am so sad that you suffer so. Chronic pain is like a tornado that rips into your life and strips you of everything. Every day is just about survival.

I understand the the torture of the pain and grief. So I understand what it takes to survive such an ordeal, especially when it is over decades.

I thank you for caring about others and fighting to help them. When in your own pain, it is a sacrifice to help others.

You are a true Warrior of Pain, and I honor you. You deserve the greatest respect. The world treats chronic pain patients the same as people with leprosy in the Middle Ages. So many have died suffering and alone.

Please keep writing because one voice of wisdom is precious to this world.

You shall be dubbed an honorary Knight in Camelot by King Arthur. I pray that a miracle eases your pain.

Lady Sharon
Scribe of
Knights of the Pain Table
http://knightsofthepaintable.com

P.S. Great video from Tami

Argentina said...

Many Americans use telemedicine to obtain hydrocodone containing products such as Lortab, Lorcet, Vicodin ES and other medications to treat chronic pain or anxiety. For chronic pain & anxiety patients without insurance telemedicine is often the only affordable way to obtain medications. Because prices for pain clinics, physiotherapy and visits to local physicians are often unaffordable for uninsured middle class US citizens it is no surprise that many buy their medications online.
If you ever went to a pain clinic you likely had to visit every month in order to receive your prescriptions. This findrxonline.com what Not only is the price of a consultation very steep (usually around $500 for initial and $250+ for follow ups) but then there is also the cost of expensive shots and medications. There are also many people who need surgery but who can’t afford it. For others who already had surgery and are still experiencing chronic pain there may not even be any solution besides ongoing pain management with strong pain medications.

shell87 said...

responding to Argentina:

I am in canada so i can afford the doctor apts. its Just a matter of someone having to take the day off work to drive me the 2hours to the apointment and back, the pain meds i can afford less since i am unable to work due to the pain but i am managing living on my "life savings" at the age of 22....

more to my point though, i got to see a pain doctor after a year of constant pain, and years or chronic pain. For the first month and a half i had to see the doctor every week (at this point he was also trying nerve blocks that needed to be done often) then we went to every 2 weeks for about 4months, then he moved it to once a month once he thought i hadmy pain under control (i dont really but if i make a fuss he flips so now i just smile and nod and hope he doesnt take away what in part takes away some pain), last apointment he said we can now move to every 2months since my pain is "under control" all the while i am trying to get a new doc who listens to me, and acturaly knows/beleives the leading cause of my pain, ACTURALY causes pain (unlike this doc) and if i ever find a new one, it is no doubt i will have to go back to weekly apointments. Not sure how i will manage that since my mother who used to drive me has now fulltime work (as supposed to supply work) to its alot more tricky to take days off.

I cant even begin to imagen how people in the US cope. Presently i have no personal insurance but have OHIP because i am in ontario.

This past year off the top of my head (going by what amaricans tell me they pay for things) i would have spent at least $18 000 in apointments and surgery... and since i have not made a doller (thats a lie, i have made exactly $8 on my etsy account) i wouldnt be able to pay for anything.

Nancy Landa said...

I'm so glad I found your blog today! Thank you so much for deciding to continue with your blog. Though I do not suffer from chronic pain, I can certainly empathize with those that do. Pain is a difficult thing for me to deal with in the short term, I can hardly fathom dealing with it as long as you and many of your readers have.

Please don't stop writing. You have a gift, and you ARE being heard. Perhaps you'll find some helpful info here: http://landahealth.com/?p=344 I look forward to reading more on your blog!

~Nancy Landa

Cheryl Howard said...

Your experience of chronic pain is really awful. Normally, a pain is the symptom of illness and an injury in your body which causes the pain. Pain creates unpleasant situations and makes us uncomfortable by interrupting our work and recreations. If you feel a pain and takes necessary action to prevent the pain you will surely be able to get rid of it but if you are not treating your pain accordingly the pain will increase and aggravate your condition. The pain which you feel in a sudden onset is known as acute pain and treating this kind of pain is quite easier and can be healed within a short period of time.

But there are pains that are caused by diseases and certain injuries and it last longer than the other pains. The pain which persists longer than the normal pain and is caused by fatal injuries and diseases is known as chronic pain. This kind of pain can have adverse effect on you by arising depression and anxiety. Chronic pain also impairs your ability to pay attention and reduce your capacity to perform attention demanding tasks. Usually chronic pains can be eradicated through traditional Chinese therapy and their medicines. This particular alternative remedy seems quite effective in relieving various pains in the human body.

Chronic pain patients can also rely on chronic pain books which are considered as most helpful and effective in dealing with chronic pain. These books provide valuable information on chronic pain and their treatment. They also contain chronic pain medication and instructions to help anyone get relief from chronic pain.

Jim G. said...

I invite you to listen to an audio on a technology that lets the body heal itself of pain using a wand infused with zero point field resonance.

www.amegatoday.com

activelife said...

I am a cytologist. I have read several blogs on people suffering from chronic pain. A solution based on sound biological priciples is never offered for the pain.
My specialty over the last forty years have been diagnosing exfoliative cytology for the detection of cancer. Because of my background in understanding the cell, I have been able to help several of my relatives make a recovery from chronic pain. If you want to eliminate your pain naturally ,you have to understand it from a cellular level.

I have not read all of your blog. However, your sister is align with the right mechanism of eliminating some of your pain. Most pain is a way of the cells crying for more nutrients carry to the painful area by an increase in circulation. However, as you said , your body is in too much pain to run or jog, and you have to come with the understanding that staying in bed and being inactive only exasperates or makes the pain worse.

I have written several important proposal for the NIH and will try to write one addressing pain from a cytopathology perspective. Please write me at alzheimprevent@aol.com and let me know why you are suffering . I haven't read all of you blog. I will tell you other exercises that you can do at the comfort of youur bed that might help you eliminate some of the pain. Meanwhile please see http:/www. alzheimprevent.com to help you understand the role capillaries play in reducing pain. You might have exercise items aready around the house that can help you. Take care

activelife said...

I am a cytologist. I have read several blogs on people suffering from chronic pain. A solution based on sound biological priciples is never offered for the pain.
My specialty over the last forty years have been diagnosing exfoliative cytology for the detection of cancer. Because of my background in understanding the cell, I have been able to help several of my relatives make a recovery from chronic pain. If you want to eliminate your pain naturally ,you have to understand it from a cellular level.

I have not read all of your blog. However, your sister is align with the right mechanism of eliminating some of your pain. Most pain is a way of the cells crying for more nutrients carry to the painful area by an increase in circulation. However, as you said , your body is in too much pain to run or jog, and you have to come with the understanding that staying in bed and being inactive only exasperates or makes the pain worse.

I have written several important proposal for the NIH and will try to write one addressing pain from a cytopathology perspective. Please write me at alzheimprevent@aol.com and let me know why you are suffering . I haven't read all of you blog. I will tell you other exercises that you can do at the comfort of youur bed that might help you eliminate some of the pain. Meanwhile please see http:/www. alzheimprevent.com to help you understand the role capillaries play in reducing pain. You might have exercise items aready around the house that can help you. Take care

William said...

Its horrible actually living with the chronic pain. I suffered a lot and now am free enough since I could manage the pain with the help of Hypnotherapy Treatment.

Alicia In Treatment Of Chronic Pain said...

I wish that you will find this helpful for your chronic pain. There are actually two types of pain, one is acute pain and the other is Chronic Pain . Surgery, broken bones, toothache, burns etc. are the usual cause of acute pain, while cancer pain, arthritis pain, neurogenic pain (pain resulting from damaged nerves) and so forth causes chronic pain. However, acute pain may eventually lead to chronic pain. a natural anti-inflammatory and analgesic, perhaps the most powerful health product in the world today. What are the benefits of the incredible mangosteen fruit particularly in managing pain and inflammation? Xanthones, which are very unique to the mangosteen appears to possess numerous potential beneficial properties such as, “antiallergic, anti-inflammatory, antituberculotic, antitumor, antiplatelet, Beta-adrenergic blocking and anticonvulsant” properties.

Kind Regards,
Alicia

Charles said...

Jusuru is a new product on the market it is a blend of fruits with the addition of halyuroninc acid, chondroitin, and cartilage. i have never seen any product EVER work faster and more effectively at resolving chronic joint pain. even people with bone on bone joint pain in their knees have had 100% reduction in joint pain in just two weeks. Jusuru is the only other product i would reccomend due to its impressive tract record in stopping arthritic pain in its tracks just a few onces daily in a tasty juice blend is required.
Charles

www.jusuru.com/charlesmarble

Ed Barrera said...

All I know is... Pain Sucks.
I lived with chronic pain in my 20's and 30's. Got diagnosed with fibromyalgia. Yeah!
Now at 50, I've been living the past 13 years pain free and I help people get out of it.
I had to learn how to move more effectively. I know it sounds too easy right. Well yeah, right.
Our brains can actually change how the muscles hold ourselves together. It was way too tight in my case, so most movements caused pain and I was stiff, stiff, stiff.
Tried the stretching thing and didn't know that now the research proves how bad that is for us. Live and learn.
Tried to exercise my way out of it and scores of other approaches.
What I learned is how animals self-correct themself through the little known process called a pandiculation.
When your cat or dog wakes up and stretches, it isn't. It's actually contracting muscles and then releases them so the brain resets the resting levels.
Of course, just simply moving can be painful. I know... so how do we go about getting back to where we want to.
Hanna Somatic Educators systematized the animal process and call it Somatics Exercises.
These are really un-exercises since they target the part of the brain which can release the holding patterns of muscles.
If the muscles get the freedom to move, the mobility returns, then the pain can leave.
I had to learn a whole new way of moving by not moving. What's cool is that we can just imagine the movements taking place following a simple 3 step process and viola - the brain instantly changes how the muscles respond.
With a little practice, the muscles get that window of free movement. Even if it's just a millimeter, that's progress. I often say I move well on account of a few thousand millimeters of progress
Since this is a learning process, it'll take a little time to get used to feeling what that is like BUT once your brain and body remembers... you'll get it.
This is exactly what we all did in our mother's womb. This is what healthy vertebrate animals do everyday to move as well as they do.
I'm testing out a new way to give out some free somatic movements. If you want to join in and chime in, I'd love to hear your feedback. Test it here.
Move well, the alternative is what some of know.

Margrete said...

I know how frustrating that is. I've had chronic pain for one year,one month, and 18 days. I feel like a freak counting. It might help to try to find a chronic pain doctor. I'm a teenager, and I'm in a complex pain group. I've only read this one post, but in the group they will try to give me drugs that will help, and relaxation excersises. Having a schedule and sticking to it helps. Also you can take classes that help you learn about pain and controlling it.

Back Girl UK said...

I hope you're as well as we ever are. I've only just found your blog and, whilst I'm sad that you do seem to have stopped writing, I wanted to thank you for what I've read so far. It looks like there will be plenty more for me to read.

I wish I had the courage to stand up to my family, friends, colleagues when they say absolutely stupid things to me. My blog's partly to help me get it out of my system so that I don't just blurt out something which they won't even try to understand in my anger at them.

I don't drink at all now due to the medications I take but I've met people with chronic pain who don't tell their doctors things like that a shot of spirits in the evening helps them sleep. Well, if the meds don't work, why shouldn't a chronic pain sufferer have a drink? Everyone else is entitled to. My own experience was that for years my doctor asked me how stressed I was at work when I asked him for help.

I've also seen the obsession with opiods in action here in the UK. Everyone was obsessed with getting me off morphine, yet nobody noticed that the pain was actually getting worse and that I was still taking daily doses of tramadol and amytriptilene and nobody cared when I started taking Lyrica. Not that any of it provides a cure but I don't understand why people think they understand all drugs because they know morphine's an opiod.

While I'm here, I'll comment on your post of 8 Nov '09. I don't know what came of the report in the end (I'll look it up) but this is definitely the kind of thinking we need. As our healthcare system in the UK faces cutbacks, I dispair of the whole thing. There were news headlines everywhere recently because patients couldn't get cancer drugs which might extend life by a few weeks. The cost of those drugs to gain those few weeks for one patient would provide me with fortnightly physio for the rest of my working life, enabling me to keep pain lower and making me a more productive member of the workforce. Nobody ever says anything like that on the news though.

Thanks again for being out there.

Drew Bufalini said...

I read your blog and wanted to contact you regarding the ebook I am compiling of inspirational stories written BY chronic pain patients FOR chronic pain patients.  Are you or is anyone you know an inspiration despite their chronic pain? I have recently rediscovered my passion for writing...and by focusing on writing I've been able to lower my pain level.  Not a lot, to be sure.  But enough to make it noticeable.  If you're interested in telling your story in an ebook, please contact me at drew_bufalini@yahoo.com for the project specs and a sample chapter. If you have an inspirational story to tell that you think could help other people, this ebook will be THE place to do it. The title? The Chronic Life: The Astonishing Discovery of Life Beyond Pain.

liposculpture guide said...

I find your blog very interesting to read.I hope you get to feeling better real soon.

Karen said...

OH How I can relate to your blog! You have almost said everything that I would say. Especially the part about the doctor. My "New" doctor is now going to be "Happy" if I call for a refill a few days later than needed so he knows that I am not getting ADDICTED. When actually he doesn't even give me enough per day to cover the pain. It really makes me angry. This is the third doctor I have been to in the last year. Then there was the pain clinic where I feel I was getting good treatment but I was finally real tired of that "neurosurgeon" giving me the third degree and asking me OVER AND OVER are you SURE you aren't getting any other prescriptions from any other doctor?" I always felt like I was in a courtroom on the witness stand with this guy. He made me feel like an addict. I could tell that this guy didn't like me at all. And I didn't like him at all and maybe he could sense that. SO WHAT. I'm so sick of these doctors. I really wish that they would have had back surgery with hardware and degenerative disc disease themselves so they know what it feels like. I had my surgery now almost a year ago and have had chronic pain down my left leg and in my hip and joints (except for the first month afterwards) ever since the surgery. I felt better with the physical therapy WHILE I WAS THERE but that was really the only time it let up. I really have to be on pain meds constantly and it just pisses me off to no end! Thank God none of my friends or family has ever said to me that I'm a drug addict (they may think that but they never said it to my face). So what if they do, frankly my dear, I don't ......
I feel for you so much and I will pray for you. That is all I have - my faith. I also suffer from depression so I have to fight the urge to go down that road, so I pray as much as I can. Thank you for your post. You are courageous!

pain management emr said...

Oh' that was so sad. I think you need to go in a specialist in pain management. Is there any update with you now?

-mel-

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