Cathy Pederson PhD presents “Understanding the Relationship between Chronic Illness and Suicide”
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- Опубликовано: 8 июл 2024
- Cathy L. Pederson, Ph.D., is a Professor of Biology at Wittenberg University, and Founder of Standing Up to POTS® Learn More at: www.chronicpainpartners.com/w...
"You go and make an effort for a couple hours and then you're laid up for the next week" - my life.
And, people say suicide is selfish, but for me, caring more about other people and what they think is the only reason I'm still here. Is it more selfish to end your suffering than to make someone else continue to suffer? Apparently most of society thinks it is.
This woman who talks is well informed and humane ... one of the first and only speeches I v seen that actually makes sense!
Thank you all for all the information and for your consideration and time. I’m a fellow EDS-er and mother of one with hyper mobility as well. I’m ever grateful for these gems of insight and tools to use in my parenting and advocation for both my son and I. It’s been very difficult being treated within my hard won medical group and especially difficult within my area to find any resources or doctors who have personal knowledge of “our” multitude of conditions. It is disheartening that my current physicians aren’t interested in their own further education on my condition... when I have been attempting to provide them with resources for a couple years now. Yet I am empowered by all the information that I received here, and have been educating myself online at the many Ehlers-Danlos sites & communities I try to keep up with. I am inspired by and driven to be present and to be a utility in every way I can for my kiddo which in itself is a big reason I can’t foresee giving up. (Though it doesn’t necessarily make it easy) I wish u all the very best & wanted to send out some love & support to all the survivors and warriors fighting with invisible chronic illness & pain.
Cymbalta made me permanently disabled with brain damage and these medications seriously need to be reviewed because a couple of these drugs mentioned can definitely do more damage than good. Xanax and clonopin for example has a lot of other risks associated with it resulting in addiction and further problems. The idea that compassionate care will be practiced is a good idea but seems unrealistic. I have severe PTSD from harm from doctors who have actually made me sick from drugs when I was once healthy, and then denied having done so. This happens to many millions of people.
AMEN to your warning about benzodiazepines including Xanax and clonazepam. I've already been addicted since 2006 by a SERIES of negligent doctors who kept telling me all the (tolerance)-fatigue was in my head, with the head of psychiatry at one of our local hospitals take umbrage with my insistence that the pain and crawly-feelings under my skin and muscle cramps and facial tics were all in my head--and it's even WORSE now that EDS has put me in chronic pain as well. Iatrogenic benzodiazepine dependence is FAR bigger than the opioid crisis. I know because I take BOTH, as well as AMBIEN/ZOLPIDEM for sleep, which is NON-addictive, apart from potentially causing the insomnia to come back, but I find that CBD is also very helpful for relaxation and sleep--for pain relief, you need medical marijuana with the THC left in, which about 20% of people of European ancestry, including me, cannot tolerate, but the CBD alone, especially the FULL-spectrum that has less than 0.03% THC in it which isn't enough to give me the severe muscle cramps and paranoia that THC causes in MMJ/Cannabis, even at a 20:1 ratio of CBD to THC, which was the lowest I could get at the dispensary after jumping through hoops to get a MMJ card after even the CBD shop said that the amount of CBD I'd need for pain relief would be prohibitively expensive--but so is MMJ because even today in 2021, when marijuana has finally been legalized in my state, HMOs will NOT cover it.
Also, with the benzos mentioned here in addition to Ativan/lorazepam, Valium/diazepam, which is the least potent/comes in the largest pill size/dosage (so you can cut the pills into smaller sizes and it even comes in liquid form!) with the shortest half-life is recommended by people in the know (i.e., people unaffiliated with the MASSIVE coverup by Big Pharma in the U.S.) for tapering off of benzos, but it took me too many years at the maximum dose being thwarted by the psychiatric community who insisted I needed to be on benzos 24/7 and that the withdrawal is only 'in my head'--I'm going to KILL next medical person who says to me, 'I know someone who got off of them; it's not that hard,' because of all the DEATHS they've caused!--to find anyone willing to follow the advice in the Ashton manual and prescribe me diazepam that I only managed to decrease from the equivalent of 40 mg./day to 27.5 and decided to give up and keep taking it because at the rate I was going, I wouldn't be off of them until I was in my 70s! Although I'm still suffering with 'tolerance withdrawal,' which is where your body needs MORE of the drug to give you the same effect, so it FEELS like you're in withdrawal even if you're not cutting back.
And it benzos DO NOT work like other addictive substances like opioids where you can go through 5 days of horrible withdrawal in rehab with nurses doting on you and be off of it. The longer you're on benzos and the higher the dosage, the more difficult it is to get off of them, and if you go too fast, the withdrawal symptoms will NEVER go away; I've been on support groups where people have been off of benzos for 10 years or more and STILL have withdrawal symptoms. I have to take it 3x/day, or every 8 hours, and if I forget a dose, within a few hours, I'm in EXCRUCIATING pain, with muscle cramps pulling all my joints out of alignment and subluxating my C1 vertebra/atlas, causing me an EXCRUCIATING headache. I believe there are FAR more suicides as a result of benzo dependence than there are by EDS patients like me, and I'm in my 'Ehlers-Danlos Years' where all the micro-injuries I unwittingly incurred when I was young and didn't feel them are all attacking me now and I'm at like an 8/10 in pain at _some_ point most days, not to mention the fatigue. In fact, one of the guys at the CBD shop, who looked like he was in his early 20s, when I mentioned I was trying to ease the withdrawal from benzos and was about to warn him about them, as I try to warn everyone, when he said that HE was using CBD to help with his OWN benzo withdrawal symptoms and had just lost a friend to suicide as a result of their being irresponsibly prescribed benzos.
Valium/diazepam was taken off the market in the late '60s or early '70s when it was known as 'mother's little helper' (yes, that's what the Rolling Stones song is about!), but the industry snuck it back on the market by reformulating the dosage and half-life and took advantage of the FDA fast-tracking approval of medications in the 1980s due to the AIDS crisis. There's a whole book about the mechanism by which they change your brain's wiring so that it can ONLY accept the drug as the antidote to adrenaline, which your body naturally makes and is called 'GABA,' as well as its history, called 'The Benzo Book' by Jack Hobson Dupont; he devotes the rest of the book to his own odyssey through 'Benzo Hell,' which is what tapering off of benzos is aptly called. Not only is its author located in the UK, but so is THE most comprehensive and truthful website about benzos that EVERYONE should read before EVER TOUCHING one of these POISONS!
(The the other one I've been on and still get on occasions although doctors are flabberghasted when I tell them it takes 3 mg.--slightly more than the equivalent of a full day's worth of Valium for me--to have ANY effect for a panic attack anymore, for 'break-through' panic attacks that I think should still be on the market but MUCH more closely monitored is Ativan/lorazepam--and taken VERY sparingly and only when absolutely necessary! Also, my tolerance to benzos is so high after 15 years that I can't undergo ANY 'out-patient' procedures requiring sedation, like and endoscopy or colonoscopy because they use short-acting benzos to sedate you for them--midazolam, I think. The generic name for Xanax, BTW, is alprozalam, and I was alarmed when I found out my aunt had been prescribed it for sleep. Ativan/lorazepam is best for panic attacks because it's the fastest/shortest-acting, comes in a very small pill, and is forumulated to be dissolved under your tongue. And STILL takes a half hour to start working!)
(Chapter 4 ... and have nobody to talk to?)
That started happening after I'd first seen a doctor for a wrist injury after I went bowling (which I was NEVER good at, and even the lightest 8-pound ball is too heavy for me, but it was a work event) back in like 1989 and was prescribed a wrist split--that I STILL have to wear while I sleep or wake up with severe wrist pain--and 800mg of Ibuprofen 3x/day until my stomach was burning (plus it gave me a nosebleed and a headache!). Then a few years later when I had another flare-up that still hasn't gone away, when I told the doctor I couldn't take Ibuprofen because of the side effects, they asked if I could take aspirin, and I said yes. But after a few days of being on aspirin non-stop, it made my stomach even 🔥WORSE🔥, so then they put me on enteric-coated aspirin, which had the same effect. Then I went for an endoscopy and was diagnosed with gastritis. Which became chronic. So whereas before I _could_ take NSAIDs, now I can't take ANY (including Aleve) or any other medication that has even a _potential_ side effect of 'stomach upset' or 'abdominal pain' because they absolutely WILL set my hypersensitive stomach on fire for at least the next three days straight, and NOTHING will make it stop except for time. In fact, the first one or two times I went to the ER for an attack of what I now know was gastroparesis, I was given some medication called 'Lortab' to take home, along with a prescription for pantoprazole (then a new drug called Protonix), but I declined the Lortab fearing it would have the same effect as all the other oral pain meds I'd ever taken besides Tyelenol, which I'm STILL convinced is a gigantic hoax and anybody who thinks it's giving them any kind of pain relief is experiencing a placebo effect!
Anyway, the second time I showed up at the ER with the same thing a few months later, they either gave me a placebo through the IV or didn't give me a full dose because whatever they gave me the first time didn't work at all; then they gave me 'another' dose, and it relieved the pain like the previous time. I think they were testing me or trying to trick me into having a placebo effect because, when I was still in the SAME agony for another half hour and told them the medicine wasn't working, THEN they gave me something else through the IV, and it worked right away!
Well, once I had the diagnosis, my first question was, what's the cure? And it's basically a diet with no fat and no fiber. Which is the opposite, fiber-wise, of what I should be eating for my high cholesterol since I tried statins and couldn't tolerate them either. Which is pretty depressing since I LOVE vegetables. In fact, my latest flare-up that lasted a couple of months and still hasn't completely gone away came after I ate something with COOKED broccoli in it--after the second night, i.e., leftovers. Broccoli is one of the WORST things you can eat if you have gastroparesis, yet it's my favorite vegetable--raw, steamed, stir-fried, even cooked till it's mushy like that 'last meal' I had back in May, I think. And when I called the GI 'expert,' he couldn't get me in until AUGUST, so I just had to suffer and eat nothing but boring, bland, mushy food. And the ONLY thing that makes it really feel better is instant Gerber baby oatmeal; just add Silk soy milk, stir and enjoy. Except I keep running out of soy milk, or I feel better and I get sick of it, so it goes bad--pretty quickly once it's opened! And I'm at the stage where I can hardly get out of bed, so my husband has to get me everything I need, and, thanks to the pandemic, which hasn't affected me otherwise since I already had no 'life' apart from vegetating in bed trying to avoid subluxations I can't get fixed, he can never find what I need.
Anyway, back to the point of this tangent, the next time I saw my PCP, I thought she'd finally believe I had EDS because gastroparesis is so common in people with EDS. But instead she looked at my record and went, 'Gastroparesis?' Puzzled face. 'How'd you get THAT?!!!' 'It's common in people with EDS.' 'But I thought you didn't have that!'🤦♀️🤦♀️🤦♀️
It wasn't till around early 2016 that I found someone in an EDS support group online who knew of a geneticist in a city two hours away from here (the closest I know of) who was actually qualified to make a clinical diagnosis of hEDS (i.e., in his office, based on symptoms and family history, and I'm SURE my mother had it) ... with a one-year waiting list. So it was only in 2017, at the age of 55, after all the damage had already been done, including a whole career based on repetitive motions, and I was already on disability due to loss of use of my hand/arm, plus panic disorder (the only two of my 25,000 ailments that actually qualified), I applied for disability in 2007 and won my case on appeal two years later. So FINALLY, six years after figuring out that I had it, I finally had a DIAGNOSIS so everyone would stop treating me like a hypochondriac. Except for my family, who won't speak to me because they think I'm faking (since I didn't USED to be 'disabled') and am just lazy and malingering, and haven't spoken to me since 2016 when my father put my mother, who was also my best friend, in a nursing home with dementia, and by the time I got my diagnosis, my father had gotten me banned (with what I finally found out last year when it was too late just before the pandemic struck and Cuomo closed down all the nursing homes to visitors, was ILLEGAL cooperation from the nursing-home administration, who kept telling me that, as her 'next-of-kin' he had the right to decide who could and couldn't visit my mother, so I never got to tell her it was finally confirmed--and that SHE had it too--or see her again until last November, lying in a cardboard box waiting to be rushed to the crematory, as my ex-father and ex-sister had decided for her. She had even started thinking my niece had EDS and wanted me to get her a book on it (she was an avid reader and thought there was a book on EVERYTHING) when she alarmingly noticed her sitting in a 'W' pose on the floor. But my ex-sister and her nasty, control-freak husband won't hear of their children having any imperfections, especially if they're anything like mine. In fact, that niece has had severe bunions, which come with flat feet and EDS, since she was FOUR YEARS OLD. I've only had a bad one on my RIGHT foot since I was EIGHT years old. It's so bad now, after I took Irish and German traditional dancing, having to wear tight shoes and be up on my toes all the time, that, if I stand up without my orthotics, which have been HEAVILY and REPEATEDLY re-customized by my podiatrist, who's also ordered me to do NO barefoot walking, my big toe rolls UNDER my second toe so that I may as well have no toe there AT ALL! And it LOOKS so HIDEOUS, I don't have to do hypermobile 'party tricks' to gross out my friends anymore! Oh, wait, WHAT friends? (My father treated my mother like a hypochondriac too and was always trying to convince my sister and me that she was when we were kids, and my ex-sister actually BELIEVES it, while, following in her deformed footsteps, I know first-hand that she wasn't! In fact, she had all kinds of surgeries on her back and for her bunions--and none of them ever worked; she just ended up in _more_ pain, so no way am _I_ having any surgery of any kind. Having my gallbladder out and taking 8 weeks to heal enough so I could sleep on my side again was traumatic enough--and I couldn't even get out of the bed to go to the bathroom or get back in it without my husband's help for the first week ... after they ejected me from the hospital within an hour after the surgery!)
(Chapter 5 ... and this topic resonates with me? especially since you mentioned the bad, bad, *bad, EVIL SUPER-ADDICTIVE, suicide-inducing benzodiazepines* that only make the chronic illness even MORE unbearable and should NEVER EVER be prescribed for more than two weeks continuously and NEVER EVER FOR SLEEP!!!)
Oh! And before you tell me just to get another doctor like a care manager from my HMO that doesn't even have offices here but the care manager is in the same city as the doctor who finally diagnosed my EDS did as if good doctors are a dime a dozen, I need to _keep_ the one I have because, not only do we have a local doctor shortage, but after years of doctor shopping during which the misogynistic doctor who prescribed me Ativan to be taken *24/7* at the *maximum dosage* after I had a car accident and an ensuing panic attack, LAUGHED at me when I told him my previous doctor had told me it was extremely addictive, saying Ambien is exactly the same (it is absolutely NOT!!!) & continued refusing to prescribe it for sleep as my previous doctor had & my current doctor does--telling me just instead to take DOUBLE my Ativan dose at bedtime!--she _does_ listen and was the only one who was willing to prescribe me Valium to help me taper and the most compassionate doctor I've had in this town since the one I had in 2001 died of pneumonia at 50 in 2005. He's the one who first prescribed me Ativan for my panic disorder (I not only have PTSD + Complex PTSD, but EDS naturally comes with a baseline level of anxiety, which is what causes the poor-quality sleep/cumulative sleep deficit that gets worse the longer you're trapped in an EDS body), but warned me about how (physically) addictive it was when I was being driven to a nervous breakdown at work because they REFUSED to make any reasonable accommodations for the ADHD they insisted I get a written diagnosis & had to pay $300 out of pocket for (and then refused to make them but used it AGAINST me!) before 'mental-health parity' became the law and now _mental-illness_ professionals--there ARE NO GOOD THERAPISTS WHERE I LIVE (I've seen ALL of them!)--don't listen anymore and are only interested in diagnosing you so they can bill your insurance and then quickly processing you with CBT and/or DBT because it's easy/requires no investment in you on their part and is supposed to process and get rid of you in 10-20 sessions. Don't believe me? See Daniel Mackler's video 'Why I Quit Being a Therapist'; that explains it all! AND I CAN'T AFFORD TO MOVE to a more Complex-PTSD/EDS-aware location!
I've _already_ lost all my friends and family, who, exactly like she says, think I'm faking, as my ex-sister's husband actually had the nerve to tell my husband, or are too busy staring at their smart 'phone' screens to call me to chat, while just looking at the computer screen subluxates my atlas/C1 vertebra causing unbearable shooting nerve pain that starts as a headache but radiates into my arms and all the way down to my feet. All I have left is my husband, who makes sure I know what a burden I am since he only moved here from Australia because of me, back before I lost the weekly chiropractic care that kept me minimally functioning & had to stay in bed 24/7 to AVOID subluxating my 'teflon' atlas in the first place--and it's nearly impossible to find one who can put it back in place, or get it to STAY that way for a whole week like the one who got put out of business when Andrew Cuomo took over the state in 2011, while my husband's afraid he'll never see his aging parents again, or his brother who has MS, needs a caregiver, and is on perpetual suicide watch. But he can't leave me here alone because his Australian Cattle Dog, which are herding dogs in the 'outback' bred partly from dingoes (NOT to be mistaken with an Australian Shepherd, which was bred in the US) needs a TON of exercise, and he trained her TOO well not to pounce on her food bowl as a puppy so that, 7 years later, she refuses to eat if we're not BOTH close enough to watch her and BOTH agree that it's OK for her to eat. And nobody else can take care of her because she's only nice, loving, affectionate, and loyal to a literal fault to the two of US & our other exhausting pets; if anyone comes near our property, she barks, growls, and snarls so viciously, she scares most people away--and rightly so since, as a guard dog, my husband assured me she would rip the throat out of anyone she wasn't introduced into our herd by _us_ ... primarily by him, who decided we _needed_ such a high-maintenance dog while knowing I'm disabled; he's the 'alpha dog,' while I'm merely the 'beta.'
One more *CORRECTION* to the statistic she gave in this presentation that _desperately_ needs to be corrected: That 1 in 5000 people affected by EDS statistic is WRONG due to severe UNDERDIAGNOSIS due to widespread medical ignorance. This page--which describes another condition that can accompany EDS and is the cause of my atlas going out with the slightest breeze--except it page keeps getting updated, even having its URL changed, & the current version doesn't include the standard abbreviation for Atlantoaxial Instability anymore: AAI)--states that it could be more like 1 in 200 people, making EDS _NOT RARE AT ALL_ : chronically-awesome.com/craniocervical-instability/
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PS: Well, one thing you can be sure of is that I'll never commit suicide using benzos. It's not like I haven't tried, but my tolerance is too high. And then you run out of benzos and suffer seizures and convulsions when you run out. Also, the hangover and ensuing nights of insomnia and panic attacks suuuuck! If EDS awareness can't be raised among doctors--and it hasn't been in the five years since this video was posted, so it ain't gonna happen in MY lifetime--can we lobby to legalize euthanasia? Or can our caretakers do it for those of us who simply can't physically do it and are physically, mentally, and emotionally EXHAUSTED not just from our diseases, but from trying to find doctors who understand ... and being told WE have to educate them OURSELVES?!!! What are we paying THEM for? No matter HOW much I learn about EDS, I'm never going to go to medical school. That's THEIR job to learn or else PUT US OUT OF OUR MISERY!!! Honestly, I DO NOT want to live to be 81 like my mother did with these headaches getting worse all the time--OR end up in a cruddy old nursing home. Nobody ever calls or visits me at my HOUSE; why should I think they would actually come to a NURSING home to visit or call me there. The few I had before smart phones and grandchildren took over their lives will probably all be dead by then anyway. They have no idea what it's like to be disabled or lonely or want to die.
NOTE: I am NOT considering suicide. I've been passively suicidal since I was 15; if I haven't done it by now, I'm not going to. But I fantasize about death CONSTANTLY. With the total disinterest of therapists these days, you can't even PAY somebody to converse with you. And those suicide hotlines are NO help at all; they're all in a rush to get you off the phone and tell you go do a hobby and find a therapist. Don't they think if we could we WOULD? How stupid do they think we are?!!! Either that, or they'll call 911 and have you subjected to a Mental Hygiene Arrest, which has happened to me so many times, it's a major source of my PTSD. That rule is inhumane, the people doing it to us either are just being spiteful or they genuinely have NO IDEA what happens in a psychiatric ER, but it's definitely NOT HELP; ELIMINATE THE TARASOFF RULE! It CAUSES more suicides than it prevents, and it helps NOBODY. I KNEW someone who committed suicide immediately after going through that horrible experience just ONCE and finding out there's no help, only PUNISHMENT and TORTURE! Nothing's changed since 'One Flew Over the Cuckoo's Nest' except better protection for Nurse Rached. Also, I've been physically INJURED by huge security guards, one at the end of each limb, and the one at my head while they were strapping on the ROUGH leather restraints was TWISTING my NECK and HAND backwards, ignoring me when I told him he was HURTING me until I did the only thing I could do to get him to let go and dug my nails into his HAND ... and then he starting howling like a big BABY, left the room, and came back with a pair of long rubber gloves on saying that I'd scratched his whole arm--which I couldn't reach and am not strong enough to grapple with a 300-pound thug, so I asked him, 'Where? Let me see these scratches all up your arm.' OF course he wouldn't show them because there WEREN'T any. And then they left me there for a half hour with one guard sitting at the foot of the restraint table where he could see right up my tiny hospital gown since they take ALL your belongings away including your CLOTHES, first thing when you get in those places and, while they keep the place freezing cold with only hard furniture, WON'T give you a pillow or a blanket any bigger than a handkerchief. And that's what I got for thinking I could actually LEAVE after going there voluntarily looking for help. It's even been done to me when the police had determined there was no need and were sending me home when I was literally KIDNAPPED by an ambulance guy who was just out to collect fares and not only committed Medicare fraud that I couldn't find a lawyer to help me with, nor did my HMO side with me after paying the totally unwarranted bill for the 17-hour incarceration at the hospital, but stuck me with two huge copays! I HATE this effed-up country that makes life with chronic illness even LESS bearable!!! Oh well, there's always the family history of heart disease and consuming LOADS of cholesterol to give me hope.
I have a similar story.
I woke up with suicidal stomach pain in middle of night. It has been going on for past 4 years. Psychedelic s is my only hope which I am about to try next month
ha, what life