I know it's been a while - the impact of not being believed!

I know i haven't posted in a while. A lot of things have been happening in my life, mostly good but some bad too. As is life!

Currently I'm struggling to live at home, mostly because my mom has once again decided NOT to believe how much pain I suffer from every single day. H says to take her words with a grain of salt but it's still hard and it still hurts! Ever had a parent break your heart? Then you know what I'm talking about. She says my pain and other symptoms are just 'excuses'. Well they aren't and I'm not sure how much more of this crap I can take from her. I don't want to push my move to Portland but I don't know what else to do. I can't live like this. I've started avoiding my own house! How fucked up is that!?! I really thought we were getting along but because I don't live my life the way she thinks I should, with her rules and her schedule - gee, sorry mom, I have my own life! and I'm 30 years old or did you forget that!?! So I'm considering either a) finding a bunch of overnight housesitting jobs on the Peninsula, to be close to my new friend CR there and her horses that I get to ride and that is helping more than I ever thought it would. Or find housing in exchange for pet sitting, which may happen in a couple of months too. Or b) save as fast as I can, ignore my mom, which is hard to do, relish the times that she is gone and deal with it the best that I can or just not be home very often and then move to Portland as soon as I can, which right now won't be until end of this year or beginning of 2009. Need to save 1st, last and pet deposit anyway, so i figure $1500 at least and also talk to J to see if she will consider Portland instead of Seattle and be my roommate :)

On another bad note, I found out that my best friend J, who lives near Seattle has to have surgery, which she had last week, for a grapefruit sized cyst that she had on an ovary. She's okay, though she lost the right one and is just taking forever to heal. She also has Fibro plus MPS and some other issues. So she's better and I didn't need to go visit her but I was quite concerned for about two weeks.

And on top of all of that, I'm also now dealing with the upsetting reality of the memory of something that happened to me over two years ago now. I didn't tell anyone about it, which I know is dumb. We, as women, always say that if such and such ever happens to us, that we'd be able to report it or tell soemone about it right away, even if it means getting someone you thought you liked or cared about hauled off to jail. Well for some reason, I dealt with it by hiding, keeping my mouth shut out of fear and then blocking it from my memory. It ruined my relationship with the only person I've ever loved and will always love, becuase I couldn't tell him, because of a stupid fear that he wouldn't believe me (even though that fear was realistic at the time); my parents and closest friends don't even know. I see movies about it all the time and ask myself why?! It's weird when you literally block a memory. But now it's been coming back and last night I had a nightmare about it, woke up in a cold sweat, alone. Then spent all of today in tears and dealing with being super anxious. Of course, it doesn't help that I'm low on Effexxor and can't get more until Wed. I can't afford to see my therapist right now so that makes the situation almost impossible to deal with. I think I need to tell my closest friends who are girls - not that I have any guy friends anymore anyway - but I need to just get it out, have someone show me that they believe me. And then go from there! I wish this feeling on no one. But I felt that I needed to write this here, to get it out.

Here is an article I just found, regarding the impact of how it feels and how it makes pain patients or anyone feel, when someone doesn't believe you:

The Impact of Not Being Believed
Monday March 3, 2008

"I just wish someone would believe me!"

How often have you said or thought that? Disbelief or skepticism about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) is something most of us are all too familiar with, and if you've experienced it yourself, you don't need a study to tell you how painful it can be.

Wouldn't it be great, though, if someone would tell your doctors how detrimental it is for them to dismiss your pain? I was delighted to see a chronic pain study out of Wales that does tell them. (While this study was only on chronic pain, I don't think it's a stretch to say the findings would apply to fatigue and other "invisible" symptoms.)

Of a group of 8 people in the study, only 2 said they had no problem getting health-care workers to accept their word on pain, and those two people also had visible disabilities. Stories from the other 6 included doctors denying pain medication, shouting at them for taking more pain killers than prescribed, and even blatantly saying, "I don't believe you," and walking out.

Those actions left them with feelings that (no surprise to us!) included anger frustration, isolation, depression and thoughts of suicide.

The study concludes that doctors and other health professionals just need to believe what their patients say when it comes to pain, bringing up a definition of pain coined 40 years ago by Margo McCaffery, a chronic-pain nursing consultant: "Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does." The logic is simple, but the implications to our treatment would be profound.

The final paragraph sums up what practitioners can do to avoid all these problems:

These simple means are: active listening; being non-judgemental; accepting the pain experience as credible as recounted by patients; and thus showing to patients that the relationship is based on caring and empathy. While these may be considered mundane and accepted practice, it is vitally important not to overlook the impact they have on patients with chronic pain.

Resource for free chronic pain & relaxation guidance podcasts

I just found this wonderful resource and I really think it could benefit anyone like myself who cannot really do meditation without being guided. I have checked out this link, the site and the podcasts and they are free and legit. I hope they help anyone in any type of chronic pain OR just for those who need to learn how to relax!

Hi

My name is Jason Newland and I provide free relaxation and chronic
pain relief services online.
On my website I have free video and audios that anyone can listen to
and download, anywhere in the world.
All my services are completely free and I am not gaining
financially, whatsoever.

I now have 19 free audio sessions for relaxation & chronic pain
relief

Please visit my website:

www.jasonnewland.com

to watch or listen to my free videos and audios for relaxation and
Chronic pain relief

Video Session 1 - Relaxation Session - 180207

Video Session 2 - Relaxation Session - 170307

Video Session 3 - 10 minute Relaxation Session - 150407

Video Session 4 - 10 minute Relaxation Session - 250407

Video Session 5 - Relaxation Session - 120607

Video Session 6 - 10 minute chronic pain relief technique 1

Video Session 7 - 10 minute chronic pain relief technique 2

Audio Session 1 - Relaxation Session - 150107

Audio Session 2 - Body Awareness Session - 200107

Audio Session 3 - Relaxation Session - 090207

Audio Session 4 - Relaxation Session - 120207

Audio Session 5 - Relaxation Session - 160207

Audio Session 6 - Short Relaxation Session - 050207

Audio Session 7 - Short Relaxation Session - 010307

Audio Session 8 - Chronic Pain Relief Session - 190207

Audio Session 9 - Chronic Pain Relief Session - 120207

Audio Session 10 - Short Chronic Pain Relief Session -190207

Audio Session 11 - Short Chronic Pain Relief Session - 250207

Audio Session 12 - Relaxation Session - 120607

Audio Session 13 - Long Relaxation Session - 040608

Audio Session 14 - Relaxation Session - 110607

Audio Session 15 - Relaxation Session - 140607

Audio Session 16 - Relaxation Session - 120807

Audio Session 17 - Chronic Pain Relief Session - 061107

Audio Session 18 - Chronic Pain Relief Session - 251107

Audio Session 19 - Chronic Pain Relief Session - 301207

Thank you very much

love Jason Newland x

www.jasonnewland.com

jasonnewland@hotmail.co.uk

myspace.com/buddhistjay

Living With Invisible Chronic Pain!

Living With Pain That Just Won’t Go Away

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By JANE E. BRODY
Published: November 6, 2007

Pain, especially pain that doesn’t quit, changes a person. And rarely for the better. The initial reaction to serious pain is usually fear (what is wrong with me, and is it curable?), but pain that fails to respond to treatment leads to anxiety, depression, anger and irritability.
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Stuart Bradford

At age 29, Walter, a computer programmer in Silicon Valley, developed a repetitive stress injury that caused severe pain in his hands when he touched the keyboard. The injury did not respond to rest. The pain became worse, spreading to his shoulders, neck and back.

Unable to work, lift, carry or squeeze anything without enduring days of crippling pain, Walter could no longer drive, open a jar or even sign his name.

“At age 29, I was on Social Security disability, basically confined to home, and my life seemed to be over,” Walter recalls in “Living With Chronic Pain,” by Dr. Jennifer Schneider. Severely depressed, he wonders whether his life is worth living.

Yet, despite his limited mobility and the pain-induced frown lines in his face, to look at Walter is to see a strapping, healthy young man. It is hard to tell that he, or any other person beset with chronic pain, is suffering as much as he says he is.

Pain is an invisible, subjective symptom. The body of a chronic pain sufferer — someone with fibromyalgia, for example, or back pain — usually appears intact. There are no objective tests to detect pain or measure its intensity. You just have to take a person’s word for it.

Nearly 10 percent of people in the United States suffer from moderate to severe chronic pain, and the prevalence increases with age. Complete relief from chronic pain is rare even with the best treatment, which is itself a rarity. Doctors and patients alike, who misunderstand the effects of narcotics, are too often reluctant to use drugs like opioids, which can relieve acute, as well as chronic, pain and may head off the development of a chronic pain syndrome.

Why Pain Persists

The problems with chronic pain are that it never really ends and does not always respond to treatment. If the pain initially was caused by an injury or illness, it can persist long after the injury has healed or the illness defeated because permanent changes have occurred in the body.

Mark Grant, a psychologist in Australia who specializes in managing chronic pain, says the notion that “physical injury equals pain” is overly simplistic. “We now know that pain is caused and maintained by a combination of physical, psychological and neurological factors,” Mr. Grant writes on his Web site, www.overcomingpain.com. With chronic pain, a persistent physical cause often cannot be determined.

“Chronic pain can be caused by muscle tension, changes in circulation, postural imbalances, psychological distress and neurological changes,” Mr. Grant says on his site. “It is also known that unrelieved pain is associated with increased metabolic rate, spontaneous excitation of the central nervous system, changes in blood circulation to the brain and changes in the limbic-hypothalamic system,” the region of the brain that regulates emotions.

Dr. Schneider, the author of “Living With Chronic Pain” (Healthy Living Books, Hatherleigh Press, 2004), is a specialist in pain management in Tucson, Ariz. In her book, she points out that the nervous system is responsible for the two major types of chronic pain.

One, called nociceptive pain, “arises from injury to muscles, tendons and ligaments or in the internal organs,” she writes. Undamaged nerve cells responding to an injury outside themselves transmit pain signals to the spinal cord and then to the brain. The resulting pain is usually described as deep and throbbing. Examples include chronic low back pain, osteoarthritis, rheumatoid arthritis, fibromyalgia, headaches, interstitial cystitis and chronic pelvic pain.

The second type, neuropathic pain, “results from abnormal nerve function or direct damage to a nerve.” Among the causes are shingles, diabetic neuropathy, reflex sympathetic dystrophy, phantom limb pain, radiculopathy, spinal stenosis, multiple sclerosis, Parkinson’s disease, stroke and spinal cord injury.

The damaged nerve fibers “can fire spontaneously, both at the site of the injury and at other places along the nerve pathway” and “can continue indefinitely even after the source of the injury has stopped sending pain messages,” Dr. Schneider writes.

“Neuropathic pain can be constant or intermittent, burning, aching, shooting or stabbing, and it sometimes radiates down the arms or legs,” she adds. This kind of pain tends “to involve exaggerated responses to painful stimuli, spread of pain to areas that were not initially painful, and sensations of pain in response to normally nonpainful stimuli such as light touch.” It is often worse at night and may involve abnormal sensations like tingling, pins and needles, and intense itching.

Some chronic pain syndromes involve both nociceptive and neuropathic pain. A common example is sciatica; a pinched nerve causes back pain that radiates down the leg. In some cases, the pain of sciatica is not felt in the back but only in the leg, making the cause difficult to diagnose without an M.R.I.

Beyond Physical Problems

The consequences of chronic pain typically extend well beyond the discomfort from the sensation of pain itself. Dr. Schneider lists these potential physical effects: poor wound healing, weakness and muscle breakdown, decreased movement that can lead to blood clots, shallow breathing and suppressed coughing that raise the risk of pneumonia, sodium and water retention in the kidneys, raised heart rate and blood pressure, weakened immune system, a slowing of gastrointestinal motility, difficulty sleeping, loss of appetite and weight, and fatigue.

But that is hardly the end of it. The psychological and social consequences of chronic pain can be enormous. Unremitting pain can rob a person of the ability to enjoy life, maintain important relationships, fulfill spousal and parental responsibilities, perform well at a job or work at all.

The economic burdens can be severe, especially when the patient is the primary breadwinner or holds a job that provides the family’s health insurance. Only about half of patients with chronic pain “who undergo comprehensive multidisciplinary pain rehabilitation are able to return to work,” Dr. Schneider reports.

As for the notion that chronic pain patients are often malingering — seeking attention and escape from responsibilities — pain specialists say that is nonsense. No one in his right mind — and most patients were in their right minds before the pain began — would trade a fulfilling life for the misery of chronic pain.

medicare prescription drug rant

So regarding Medicare, I'm wondering who else here is in the same boat that I am in - meaning, you don't pay a premium for Medicare and you don't have to deal with the Donut Hole issue. In other words, just last month I suddenly was no longer paying for many of my prescriptions. particularly my triplicates - the Percocet and MS Contin are now free and the others: Soma, Ultram ER etc are still $3.15 or so. My question is, has anyone experienced any kind of limit put on their medication in the last month. I just went to get my MS Contin refill last week and I was going to run out by today but didn't think there would be a problem. But suddenly after having taken MS Contin since March of this year, it was suddenly a problem for Medicare to pay for it. They are now limiting me to 120 pills instead of 180 (I don't need 180 but my doctor wants me to have as big of a stockpile of meds as I can, so the extra amount is always a good help for that). AND on top of that, they suddenly had a problem with it having to be brand. Well, sorry, but generics for my pills that count - the heavy pain killers, don't do jack for me so I can only take brand. And why is there suddenly an issue. Of course, my doctor's office was supposed to take care of this for me and when I called on Monday they still hadn't, even though I said I was going to run out on Tuesday. I ended up calling AARP who I have my prescription plan through and fixing the problem myself, so I just picked up 120 pills with teh brand name. But the woman said they had just put a limit on the medication, but couldnt' tell me exactly why. It would be great if they could put out some kind of notice, telling you that now these drugs on this list now have certain limitations, etc.

Another problem that we just discovered, is that when I finally had my disability for a year and got my Medicare, in august of 06, no one told me that if I had other insurance, I needed to call them and switch that insurance over to a supplemental insurance. No one told me I had a 3 month limit and in that amount of time, that was what needed to be done. Well shit! My mom called Blue Cross yesterday because every two months - when my dad pays my bill - the price keeps going up and up, for no particular reason at all. I dont' want to lose Blue Cross as my alternative back up insurance because one day I plan to not need Medicare anymore and if I go away from Blue Cross, I'll never be able to get it again and it might be nearly impossible for me to get any type of insurance on my own, because of my pre-existing conditions. So my mom calls to see what the deal is and the guy is so rude, talking so fast and eating his lunch while he's talking, making these gross chewing noises. Gees! What is wrong with people?? So she finally finds out that this needed to happen a year ago and that I'm basically shit out of luck - meaning that if I switch Blue Cross to be my supplemental insurance, that I won't have prescription coverage for 3 months, until january. Now, yes Medicare pays most of my prescriptions, except one - my Klonopin - this is not a med that I can change, as others like it have not worked the same way. The problem is that I can't get it refilled until the 19th of Sept and I only get #30 a month, so I'm hoping that if I explain the situation to my doctor, he can tweak my prescription and write it for at least double the amount. I use it to sleep and also when I'm having panic attacks and really bad days. So I don't take it too often but I can't not have it around as it is a great lifesaver when I do need it.

I just don't get the system at all. But I think what we're going to do is just wait until I can get my Klonopin refill on the 19th, then when my parents are back from Tahoe on the 24th, my mom will call and get Blue CRoss switched to supplemental so the bill for over $400 which is due Oct 10th, doesn't have to be paid. I hate that I can't pay it myself but my parents swore that their kids would always have insurance, because it's one thing that is pretty hard to get once you've lost it.

I still can't afford to get Actiq, the drug that would normally keep me out of the ER when I flare up pretty severely, I have one left! Blue CRoss no longer covers it - I used to be able to get it from them at $10 a pop. But Medicare says they won't pay for it for me because it's prescribed mainly to people with cancer. What a bunch of bullshit!?! My pain is certainly at the cancer pain level, if not higher at times. (I'm not trying to compare myself to someone else) - but....come on! What the fuck?? I'm so pissed and ticked off that me as a pain patient is being denied certain medications that could save me from much sufferign, because the makers of Actiq won't add chronic pain to their list of uses for the drug. Actiq is Fentanyl, but I can't use it in the patch form, unfortunately - makes me severely nauseous even at the lowest dose. But the lozenge pops are wonderful! If I had to pay out of pocket, which I did once when I got my workman's comp money - I bought 30 pops for over $2000. It was insane! I think I would have to pay $40 a piece for them or something ridiculous like that. And the company used to have a advocate system that would help you appeal to your insurance if they weren't willing to pay for it for a chronic pain condition but the 800# no longer works or is out of service and you can't get anywhere online. We definetly need more advocates to help us - especially since I can't tolerate the stress involved in dealing with insurance companies and certain doctors, etc. I mean, we have advocates to help you when applying for SSI and SSDI but not for getting medications and dealing with insurance?? How does that make sense?

Anyway, that's my rant for the day.

Please do the dishes - parents don't get it!

So I'm sick of my parents, mainly my mother, not getting that when I'm flaring and yes I've told her/him which specific body parts are currently killing me - tonight happens to be that I have these huge bundles of knots in either shoulder, up on top of the blade and it's the same muscle that goes down along either side of my spine and back up my neck to my head. The knots and muscles will not relax, some heat is helping but nothing else is working - my Soma is just making me sleepy and at least I got a nap in before bed.

But before dinner, I told them both what was going on because they don't get it when I say that I'm 'flaring'. That should be an indication that I'm in more pain than normal - I feel like they just ignore the reality of my situation and go about their lives with no concern about mine. The only thing my mom did today was offer me to heat up a shoulder wrap but then after dinner, I'm nauseous, on the couch with a ice pack and bundled up, not moving - my says, good night and oh by the way, I hope you won't be surprised that we're leaving you the dishes to do! What the fuck??! I think. What part of my shoulders and neck are killing me and why can't she connect the dots and know that my shouders are connected to my arms and those aren't working right because of the pain in my shoulders?? Now you're expecting me to be able to do the dishes, which involves lifting pretty heavy plates and hot water and greasy food. Sounds exactly like what I want to be doing on top of my pain. I'm just astonished. I don't understand at all why two very abled human beings can't take over chores like dishes from someone who normally does them (yes, I usually do the dishes but NOT when i'm hurting so much!). Do I really need to make a list of all of the things I shouldn't be doing when I'm in any kind of pain that is above normal? I guess so! I just don't know what to do anymore! I'm sick of this bullshit!

So if any fibro people have any suggestions for dealing with parents, please fill me in. Yes, I still live with my parents - moved home two summers ago after having lived with my boyfriend for 3 years - he's up in Oregon now and it sucks but this is what I needed at the tiem. I'm seriously looking into moving to the Portland area now, as I'm one of the few lucky Fibro people who can actually stand the cold AND I do better with cold weather and rain. I can't stand and I actually get sick now from the heat + humidity or mugginess, which we've been having here in sucky California - yes, I hate this state now. I dont' want to live here anymore, I want to be where it is green all the time and I don't have to make an effort to stay out of the sun much and people are nice :) But in the meantime, I still have ot deal with my non-understanding conditionally loving parents - who of course would deny not loving me unconditionally but it's true, that they do love under their rules, their conditions, when I'm in their home. It's stressful and it sucks and my only positive result is that they are gone at least one week each month, sometimes longer, so I get the house to myself very often. That is my trade off for the time being. Come beginning of the new year of 2008, I will be taking a trip to Portland to check it out, hang out with old friends who are there now and seeing where I can move to.

Good resource for getting information on Fibromyalgia

So Im pretty psyched, even though I can't sleep and am awake still at 2:30am. I just saw the first ever commercial - and not even a drug-promoted commerical - just an info commerical for Fibromyalgia. How cool is that!?! This is a major breakthrough because this is just one more step that is going to help to educate the public about this horrible illness. So I'm really happy! Keep your eyes peeled. Thanks to the NFA for putting it out too! If you want more info, check out their brand new site at: http://www.fibrohope.org/.

Help support the fight to find a cure and help promote awareness of this illness that so many more people suffer from than people even realize.