The mind of a child. « on: February 16, 2014, 09:01:13 pm »
In some ways, I feel like I have the mind of a child. I am afraid of everything. going for a walk, going anywhere…talking to people…talking on the phone. It is as if my self confidence will have to be relearned. The confidence to go back to work…I’ve gotta relearn it. the confidence to go to the store, where all those people are, I must relearn that. That pounding in my chest…I must relearn that it’s ok, it means my heart is doing it’s thing, just as it always has.
Re: The mind of a child. « Reply #1 on: February 16, 2014, 09:16:15 pm »
You won’t have to relearn it. It comes back naturally and gradually. It just takes time. It can take up to five years but it will come back! It helps to accept that it’s a part of the process. It will happen and you’ll be so grateful for every new sign of returning mental and physical health.
My name says it all « on: September 14, 2013, 12:31:02 am »
Five days after the birth of my last child, I had a post-eclamptic seizure from toxemia, almost died and was put on life support. I’ve never been able to sleep a night since without some form of medication. I was put on Klonopin for 9 years. Experienced tolerance multiple times. Tried to withdraw multiple times with and without doctors help, but could never break the bonds. Finally, I found a website like this, crossed to Valium, tapered for 9 long months, and was finally free from benzo hell. Hardest thing I have ever done, but I can vouch the process works!
I was benzo free for 7 years and starting to live again, when suddenly I completely stopped sleeping again. After six nights of zero sleep, I believed I was going to die again. I was given 7 pills of Temazepam. It was like giving alcohol to a recovering alcohol addict.
I was diagnosed with PTSD and anxiety. Four days later I was ready to admit myself to the psych ward because I was manic. I have never felt so out of control. My nerves felt electrocuted. I have never been so sick. I lost over 15 lbs in 6 weeks. The doctor tried four more SSRIs before I found another doctor who said I was SSRI intolerant and put me on 100mg Seroquel and Xanax. Meanwhile my only escape from the anxiety surges was to sleep using Temazepam and the Seroquel.
After four weeks on the Temazepam, the doctor who helped me with my first withdrawal helped me cross over to Valium. I saw a psychiatric and a neurologist who both agreed the toxemia seizure from 18 years ago destroyed the chemicals in the brain needed to sleep and that Valium and Seroquel were my only options…for the rest of my life. When you are so sick, you get dumb or numb, and I was tired of fighting. I was prescribed 20 mg. Valium and 100mg. Seroquel with the assurance that I would never have a problem getting refills as long as I kept coming to them. I asked them about tolerance, they both told me it wouldn’t happen for years. They lied.
So this is an introduction that I never thought I would ever write. I have been here before and never in my wildest dreams imagined that I would be here again. I know that I can’t stay where I am. I know this is not a drug you can stay on for life. I know my only hope is in getting off…again.
I’ve been reading here for a couple of weeks. It is painful to remember the suffering and pain withdrawal can cause. I wasn’t one of the lucky ones who could just step away the first time and I don’t imagine it will be different this time. I am not sure that “experience” helps in this case because I know what probably lies ahead having gone through this before. I needed support then, and hope to have some again this time around. The only thing that I do know is that after being off Benzos for the 7 years I was free, this process does work, and there is a better life after the pain and suffering of withdrawal. Knowing that is the only reason I can do this again.
Listen to the irrational rage of angry drug addicts. The below professional victims blame everyone but themselves for their drug abuse problems. Let me remind readers that no one forced these people to take a single pill (unless they were forcibly admitted to mental hospitals and given drugs against their will). Like the rest of us, they were able to research the potential side effects of medications before taking them and decide whether it was worth it. They alone had the responsibility to research what was prescribed to them. If they didn’t look into the drugs they were prescribed they have no one to blame but themselves. They need to direct their anger at themselves and not at doctors or pharmaceutical companies. I am not a doctor but it seems as if many of them have an actual need to be on medication.
Rebecca Love Gerondale Those effers never gave me anything but grief anyway… Why I ever stayed on them I will never understand. A strange life indeed.
The Benzodiazepine Project You most likely had “medication spellbinding”. If you haven’t read that paper by Dr. Breggin, you should. It really helps to understand HOW and WHY.
Rebecca Love Gerondale I will for sure… The thing that is so idiotic to me is I never felt better on them for even a day, I just didn’t feel worse and at the time that really meant something to me. Six years later…
Rebecca Love Gerondale Sometimes it’s really hard to have grace for myself. I’m so angry today.
Rebecca Love Gerondale Yup. It’s nothing new and definitely has been a part of this. It makes sense. I’m pretty good and just letting the feelings be there knowing they constantly shift and flow. Thank you for the kindness.
"what do I tell other people?" I read this piece on benzo withdrawal to a crowd « on: August 11, 2013, 04:56:40 pm »
A common question that I have seen here over the years is “what do I tell other people?”, generally due to a cross between the impossibility of explaining the experience and the stigma that benzos frequently invoke of either or both mental/emotional illness and drug abuse.
I long ago switched from dropping the name/family of the drug, and just explain that I was prescribed a medication that caused serious neurological side effects, which is the short version of what is pasted below. On Wednesday, I read a piece that I wrote to an audience of about 60 about the experience of being invisibly disabled that was extremely well received.
Just to give the background on the writing assignment and the audience, this is a monthly queer open mic (well, open with prior sign up) that gives a one word topic to participants every month to present on in a 7-10 minute time slot. The topic for this piece was “FANTASY”, so what do I fantasize about? Not being disabled, of course, and all of the things that I am going to do when I am better.
Basically, the first half of this piece is where I specifically am talking about illness and it is more serious, and the second half is where I am talking about the things I would like to do and was fairly specifically geared towards a GLBTQ audience. I had mixed thoughts about including the second half, here, for a non-primarily GLBTQ audience, but then I figured “what the hell?”. If that isn’t you, you can either stop reading it at that point, or otherwise keep reading it and learn about a slice of life you otherwise have no access to. If that’s a foreign world to you, the only thing that you need to know going into this piece is that unfortunately, a lot of queers are not only rejected by the straight world for being queer, they then get very painfully double rejected by people in the gay scene who have internalized the straight world values (ie, “you’re too butch/effeminate”, etc.), as I do refer to that phenomenon.
The last few years have contained some extremely negative and some extremely positive experiences for me, and both the bad and the good have leant themselves to a great deal of fantasy. But in order to fully describe my fantasies, I must first explain my reality for contrast.
My current reality is that I am badly, if almost totally invisibly, disabled.
My illness was caused in the course of horribly f*cking up on every level possible the diagnosis and treatment of another serious health condition, being advanced auto-immune thyroid disease, which was very dangerously advanced by the time they finally caught it, and even more so by the time they finally properly treated it. Ironically the thyroid disease is now totally managed and no longer effects my life at all, however the severe side effects of a medication that was totally inappropriate for my condition, and was even then not prescribed within standard guidelines, have still left me devastated with a host of severe neurological side effects and physical pain three years later.
One fantasy that I have is being able to explain what I am going through to other people. I feel like when you tell people that you are disabled and they don’t see a wheelchair that there is a great deal of silent “but you don’t look sick” cynicism like I am exaggerating or bellyaching as opposed to people with *real* disabilities because most people do not know what either serious suffering or serious illness actually look like.
To an extent, I can get that. I don’t know how someone could look at me and in a glance know that I have spent most of the last three years, including right now, operating somewhere between being mostly bedbound and mostly housebound, or that when they are seeing me that most of the time I am only out with the assistance of friends who are invisibly around me looking out for my interests. There is no way to look at me and to know when I am in one of my long stretches where I am struggling just to bathe and feed myself, or when I am struggling even just to make it from my bed to the bathroom when I have to pee.
There is no way to realize that when you’re seeing me out, that that is literally one of the only times I will even leave my house at all that month and that I am completely dependent on others to bring me groceries because I can’t walk a block and a half to the store. When I am having a good enough day to actually escape my house and people see me out, what they don’t see is all of the times that I couldn’t make it out even with assistance, or how badly I am silently struggling just to be present in front of them at that moment, and they especially do not see the very high price that I will physically pay for having gone out for days after, or sometimes for far much longer.
I think that for people who have not experienced or been around serious illness, their only point of reference for what illness looks like is their own experiences with a flu or high fever. When you are an otherwise healthy person dealing with a temporary illness, you can afford to check yourself out of life and to wallow on a couch or in a bed for a week or two. But when you are dealing with an illness that stretches from months into years, and especially when it involves such profound physical suffering, you start to realize that no matter how much pain you are grappling with or how physically weak you are, absolutely anything is better than staring at your four walls with nothing to think about other pain.
When I go out, I only go to high pay off events because the only way to cope with what I am going through is to either throw myself into giving a performance, watching an interesting performance, or throwing myself into an interesting conversation with an interesting person. Except for occasionally euphemistically mentioning that I’m “not feeling well”, which even then I only mention to people I feel comfortable sharing that much with, I will discuss anything and everything except for being sick and the actual nitty gritty of my symptoms because I am desperately trying to focus on absolutely anything other than what is going on with my body. But for once, I would like to live my fantasy of saying out loud what I have been going through for the last three years.
The best way to describe a lot of what I experience is that I have all of the symptoms that you associate with a 104 degree fever while simultaneously tripping on several hits of acid, no matter how straight I’m able to play it when we chat. Not only is that not an exaggeration after three years of near daily hallucinations, visual distortions, and deeply confused and effort filled thinking, it leaves out the additional cardiac symptoms, GI symptoms, a physical inability to sleep, profound physical weakness and exhaustion that have nothing to do with sleep, vertigo, severe short and long term memory loss, involuntary muscle movements, painful muscular dysfunction, bursts of nerve pain, and migraines that have lasted weeks at a time (the record having been for eight weeks).
I fantasize about relief all of the time, but being healthy and pain free is such a foreign concept to me at this point that instead I just frame my fantasies in terms of just no longer suffering. I am projected to make a full recovery someday, and one at a time I see the list of symptoms in my progress log get shorter, but then I’m left to wonder how half of the symptoms can still kick my ass as hard or harder than when I had them all. In the past few weeks, after seven solid months of [not even struggling just to get through the day], but literally struggling just to make it from one moment into the next, I have finally upgraded from solid abject physical suffering to only just feeling like shit. I have had these reprieves before, and I feel like a cross between Pinocchio and Cinderella, because for the first time in a very long time I feel like a real person, but at the same time like the clock is ticking until my symptoms overwhelm me, again. But I fantasize that this time the pendulum doesn’t swing the other way and this bit of relief is a permanent down payment on the full recovery I’ve been promised for three long years.
So, that is the worst of what I have been dealing with, but like I said, wonderful things have happened to me during this time, as well, and they have also opened the door to many fantasies.
When I was younger, after having grown up in serious fundamentalist territory, the moment I turned 18 I ran out into the world to “find my people”, but was rudely disillusioned by the queer people that I did find through my late teens and 20’s. The message that I was resoundingly and relentlessly told by them was that in not fitting their mold I was “too weird”, that I was “making everyone else look bad”, and that I was being gay “the wrong way” because they found me to be too dirty and too gender bendy, they were weirded out by my then-work as a professional dominatrix, and because in addition to liking girls I also liked getting some dick and, even stranger still in their view, I am also deeply attracted to people who didn’t fit into their surprisingly binary views on gender.
I did not have access to the information that these are messages that many of us are told about ourselves by other queers who seem to have internalized the uninformed main stream perspective on gender and sexuality. I didn’t realize that, rather than relying on real life, these voices were just relying on straight stereotypes and models for their ideas on how to be gay correctly; just as they did not realize that in the process of trying to police the natural behavior of others out of the fear that it would only incur more abuse from the outside, that they were effectively doing the bullies work for them inside their own community.
I instead threw myself full tilt into rocknroll and punk rock where I was welcomed, loved, and accepted with open arms. But despite being accepted and loved, I still never felt like I could find anyone who was vibrating at the same wavelength as me.
That all changed when I saw [local drag queen activist and musician] perform at the beginning of last October, and in the space of a moment I went from feeling like the only person in the world such as myself to not only having found the others, but I had found the others, there were a ton of them, and they were having a huge party, and I was totally invited! I might still have felt uninvited just out of habit after having felt so unwelcomed by all things queer so late into my 30’s, except for that [said drag queen] was so expressly welcoming to me throughout the show and after. I was literally saved by the kiss of a handsome princess.
This watershed moment opened the door to the rest of my life and fills me full of fantasies of what I am going to do once I am well enough to take full advantage of it. Since the show in October, I have accomplished a few things. I have gotten on stage for (local event] Show and Tell and have delivered a personal narrative, shown a series of dirty drawings I made of the classic Universal monsters having gay sex with each other, shown flyers I made for a sex positive group I was in in college, and lectured on pieces of historic erotic art which I post daily on my facebook account. I appeared on a local access show and lectured on gay and lesbian erotic art history, and in the freest moment of my life (so far!) I was carted down the street in a pedicab for gay pride topless (and that’s without the bullshit electrical tape over my nipples) while wearing only a tutu, fairy wings, and a halo.
I am not exaggerating when I say I was barely able to get out of bed with help to do these things and my participation in all of these events nearly physically destroyed me, both while I was doing it and in the very physical that price I paid after. But I paid the price each and every time because without my health, literally all I have is my happiness and each of these things made me very happy, but in my fantasies I do these things without effort, pain, or losing ground in my recovery.
In my fantasies, I can do everything I want to do and volunteer for every call for performers. I keep myself afloat by keeping a notebook full of all of my ideas for future costumes and lip sync routines and dirty lyrics for a band I fantasize about being well enough to have.
I fantasize about my heavily impaired memory improving enough to perform the Buddy Cole monologue where he is visiting a dead friend’s grave for the Halloween edition of Show and Tell. I want to do it so that I can, in full context, deliver the most important sentence I ever heard, being the line “he was the kind of faggot that made respectable gays *so* uncomfortable”. Because I am that faggot and I am sorry that I ever let their discomfort interfere with finding my *real* people, being the drag queens, trans folk, leather people, and anyone else who was ever told by another gay that they were ruining it for everyone just for being themselves.
I fantasize about getting someone to show me the ropes so that I can successfully dress in drag as a drag queen for at least several numbers I would like to perform. I fantasize about being able to finally learn how to put on eye makeup symmetrically, and I fantasize that when people see me all queened out, that, if only for a moment, they say to themselves, “that guy is lucky he’s so short- it makes him that much more convincing!”.
When I was writing this piece, I fantasized about having an extra three minutes in my time slot to end on a lighter note with a sexual fantasy involving having hot lesbo sex with two drag queens, because A) I did write it out and it was totally hot, and B) it was also very funny on top of being very sexy, and I generally prefer to deliver laughs than seriousness. The fantasy will be filed away for future use, and until then I look forward to making all of my fantasies, including that one, a reality.
Re: "what do I tell other people?" I read this piece on benzo withdrawal to a crowd « Reply #1 on: August 11, 2013, 05:38:06 pm »
This awesome. Clear and articulate I really congratulate you on communicating this!
Re: "what do I tell other people?" I read this piece on benzo withdrawal to a crowd « Reply #2 on: August 11, 2013, 05:40:02 pm »
Wow [...], fantastic story. So glad you were able to deliver this piece not for benzo awareness but because it made you happy! Sounds like we are at a similar age and doesn’t it feel great to finally get to the point of letting go of how everyone else feels about you and just living how you want to? Live for yourself first, be happy and don’t try to be a people pleaser! Spent too many of my years focused on pleasing others instead of myself. That is something I’m getting better at during this benzo w/d, so something good is coming out of all this misery and suffering. Take care, hope your fantasy comes true!
Re: "what do I tell other people?" I read this piece on benzo withdrawal to a crowd « Reply #3 on: August 11, 2013, 06:00:17 pm »
I’m glad you’ve got some acceptance.
I go to Narcotics Anonymous meetings and most of the folks there are either recovering heroin/opiates, cocaine or meth addicts. When I talk about Valium, no one seems to “get it” that even though I’m now 77 days off the drug, I’m not functioning as well as they are. I explain about how it takes so long to recover from benzos and NO ONE seems to get it.
I still go to NA meetings, mostly to just be around people and get out of the house, but I’ve kind of stopped talking about how long it’s taking to feel “normal” again. I’m able to function at the meeting, so I just keep my never-ending recovery process to myself.
I truly believe that the only people who truly understand benzo recovery are folks who’ve been through the process. I don’t think many of them end of at NA (or AA, which I found even less hospitable than NA) meetings. Oh, well, I guess I’ll always be the “odd man out” at meetings…
Re: "what do I tell other people?" I read this piece on benzo withdrawal to a crowd « Reply #4 on: August 11, 2013, 08:08:17 pm »
I’m surprised to hear that [...] because I know a couple of people who are Rx IV drug users and they sure get it about benzos.
Anyway I’m glad you go to NA, I used to go to AA and although I’m not a huge fan of the program itself I always enjoyed the camaraderie and going for meals and coffees after meetings, that was fun. I made some good friends there.
[...] that’s a great piece! My powers of concentration are a bit off due to w/d and I often have difficulty reading through something from start to finish but your words held my atttention all the way through and I think you did a really commendable job. Thank you.
Best to you both,
Re: "what do I tell other people?" I read this piece on benzo withdrawal to a crowd « Reply #5 on: August 11, 2013, 11:43:44 pm »
Wow. I don’t know what to say. I felt so overwhelmed reading this. I somehow felt very proud and happy on your behalf.
« Last Edit: August 12, 2013, 04:47:35 am by [Name hidden] »
Re: "what do I tell other people?" I read this piece on benzo withdrawal to a crowd « Reply #6 on: August 12, 2013, 03:40:51 pm »
Quote from: mplsgrl on August 11, 2013, 05:38:06 pm
This awesome. Clear and articulate I really congratulate you on communicating this!
Coming “out” as a benzo victim!
Hey thanks, though I actually never mentioned benzos. I weighed it out and while I used to specifically warn people about benzos in the past and am open to doing it again in the future, I feel that even if it was only a handful of times that I just really don’t have it in me to deal with any sort of both ignorant and nasty remarks about being a drug addict and being responsible for my own problems, again, while I’m dealing with such hardcore stuff, at the moment.
Re: "what do I tell other people?" I read this piece on benzo withdrawal to a crowd « Reply #7 on: August 12, 2013, 08:32:38 pm »
I loved the writing, the content, the style and – if you’ll forgive the metaphor – the sheer balls it displays.
Re: "what do I tell other people?" I read this piece on benzo withdrawal to a crowd « Reply #8 on: August 13, 2013, 12:22:35 am »
Amazing piece, [...]! So well-written and powerful. A lot of what you wrote about withdrawal speaks to me as someone who’s had CFS for years just as much as it does someone who has been through withdrawal. I hope your full recovery is just around the corner so you can get to making those fantasies come true.
Poem untitled « on: July 13, 2013, 11:11:33 pm »
Inside my mind is slowly breaking,
My heart constantly aching,
My body slowly breaking down,
I shudder at the faintest sound.
Those white pills seemed like a boon,
Didn’t think they could cause so much gloom,
If only I could turn back time,
Now I would be feeling fine.
I couldn’t help myself from taking more,
Like a junky making a score,
To rid me of my anxiety,
All I wanted was to be set free.
So I find myself depressed,
No longer anxious but totally stressed,
I try to cut down the pills,
Then come the aches and the chills.
All these symptoms I try to ignore,
Mind is weak body is sore,
I know I can get through this,
To be benzo free would be such bliss
Re: Poem untitled « Reply #1 on: July 14, 2013, 04:48:30 am »
Thanks for taking the time to write the poem. I can relate to what it’s saying.
Re: Poem untitled « Reply #2 on: July 14, 2013, 09:14:53 am »
That is a very poignant poem, AIgc.
Thank you for sharing it with us.
Re: Poem untitled « Reply #3 on: July 19, 2013, 09:06:02 pm »
that’s fantastic. This poem should be seen by everybody–it’s a poignant commentary.
All my best,
Suing your Doctor for medical negligence « on: July 14, 2013, 02:04:55 pm »
Has anyone done this?
Re: Suing your Doctor for medical negligence « Reply #1 on: July 15, 2013, 04:23:41 am »
No, but I would love to.
Re: Suing your Doctor for medical negligence « Reply #2 on: July 15, 2013, 04:42:15 am »
I don’t know how anyone could win? There’s no research done on humans in the US that declares that benzo’s, even long term, are dangerous. If there’s nothing to prove he’s negligent, then there’s no case. Plus, the majority of people who take benzo’s long term don’t have problems getting off them, so they’re considered safe. I don’t think any research will be done in the US about the harm of these drugs, too much money to be made by Big Pharma. I think they’re trying to warn the elderly not to go that route.
Re: Suing your Doctor for medical negligence « Reply #3 on: July 15, 2013, 05:43:56 am »
I was thinking about making a regulatory complaint against my doctor. The grounds would be (a) never gave me any instructions on how to take the medication (b) didn’t advise me of any side effects (c) allowed me to continue to use the medication longer than the recommended time, without advising me of the risks of doing so. Lawsuits are long, expensive, and probably difficult or impossible to win. However, although I’m no expert, I believe doctors have a duty to do the above when prescribing medication. And mine didn’t. Maybe if people start making complaints against their doctors, the medical profession will start getting the message about how serious this is. You may not get any money, but your doctor will have to explain themselves to their regulatory body. This process is likely free and/or cheap. Just a thought.
Re: Suing your Doctor for medical negligence « Reply #4 on: July 15, 2013, 06:40:05 pm »
I’ll bet you can sue the doctor, especially if you were on long term, because it plainly says in the prescribing guidelines DO NOT prescribe benzos longer than a certain amount of time, I think like 2-3 weeks.
Re: Suing your Doctor for medical negligence « Reply #5 on: July 15, 2013, 07:16:35 pm »
You can sue anyone. Winning is another matter.
Re: Suing your Doctor for medical negligence « Reply #6 on: July 15, 2013, 07:41:35 pm »
CITA brought a class action in the eighties and lost.
Re: Suing your Doctor for medical negligence « Reply #7 on: July 16, 2013, 01:36:54 am »
Quote from: [Name hidden] on July 15, 2013, 06:40:05 pm
I’ll bet you can sue the doctor, especially if you were on long term, because it plainly says in the prescribing guidelines DO NOT prescribe benzos longer than a certain amount of time, I think like 2-3 weeks.
Hi [...], I live in the US and I never read anything about the prescribing guidelines. I’d be interested in seeing that info. I’ve read the package inserts and seen the PDR recommendations and never read a thing about long term use. I asked the prescribing pdoc questions before about them causing brain damage and he said, no. My pdoc is so powerful where I live with millions of dollars in his pockets, and very smart. A class suit would be the way to go. My family doc can vouch for my having problems from these pills. We talk about it in his office, but he won’t document it in my discharge instructions when I leave. He keeps quiet about it in his practice, because this w/d problem is not supported in the medical community. He knows exactly what I’m going through, so at least I have validition for my family and friends. He told me early off, “Your going to feel like scratching your own eyes out and other peoples,” and “you’ll start obsessing.” He also said that he knows that some people still struggle at a year off. He said my pdoc should have his license revoked, he was so mad when I went to see him. Let’s all get a class suit started, I could use the money.agai
Re: Is it benzos? « Reply #4 on: July 02, 2013, 01:25:55 pm »
Quote from: [Name hidden] on July 01, 2013, 09:24:16 pm
We don’t know everyone’s medical history, in fact rarely do we know their age or even whether they are male or female. Despite this I think we are far too quick to pass judgement – and that judgement 9 times out of 10 is that whatever their complaint it is down to benzos.
I’ve tried to make this point in several postings but it is not well received. This helps to explain why members often report that their doctors are unsympathetic. What is going on is that the doctor has more data than we have and is making a judgement based on better information. Posters don’t always tell us the whole story here on the forum.
I have long held that doctors see very few (if any) cases of pure protracted withdrawal syndrome absent any comorbid conditions. In fact, pure protracted withdrawal syndrome is not even a recognized diagnosis. Because of the variety of weird symptoms and the fact that people can’t seem to describe their subjective symptoms in a clear way, is it any wonder that PAWS is never diagnosed as such?
When it comes to getting help from the medical community, we on this forum may be our own worst enemies. The general tone on this forum is not conducive to being treated seriously by medical practitioners because it is 98% percent emotional/irrational, and only 2% factual/rational.