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Restating the BB Mission


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Hi,

 

I've been considering comments received from those who have been here a long time regarding the changing nature of BenzoBuddies as we have grown. Some of these changes are indeed associated with - and are part-and-parcel of - a growing active membership. However, other changes appear to be due to us taking in ever-increasing numbers of members that were part of (or would have gone to) other benzo-support sites of a different philosophy and flavour.

 

Up until about a year ago, there was the very long-established benzo-withdrawal Yahoo group, which had (or so I have been informed) a somewhat top-down (moderator-to-member) approach to benzo-withdrawal support. Then, there was BI (benzoisland.org), which (I understand) followed a rather strict adherence to the Ashton Protocols, where members were expected to substitute with Valium; BI closed last Spring. Last Autumn, BW (benzowithdrawal.com) - which operated a hands-off, laissez-faire approach - also closed. A few weeks ago, The TRAP closed. Again, The TRAP operated a top-down approach to support, where the bulk of help was provided by the Administrators and moderation team. I think BenzoBuddies has always operated in quite a different manner to all those other forums. But, as each forum closed, members started to migrate to the remaining forums, and, now, most of those that still require online support have ended up at BenzoBuddies.

 

It is of no surprise that many of these new members - those of whom have arrived here from other benzo forums - will have a different perspective and expectation about what constitutes a benzo-withdrawal support forum. Members sometimes request features and areas that formed part of their previous support group. Such requests are to be expected. However, it is important to understand that BB was formed to provide a particular kind of benzo-withdrawal support: peer-support, where almost any topic might be discussed, so long as members remain respectful of their fellow Buddies, adopt a non-prescriptive writing style, and understand and acknowledge other members' right to determine their own health decisions made in consultation with a doctor. Our Mission Statement has not changed as a result of the other support forums closing. Nor have our rules, guidelines, policies or Registration Agreement. Whilst we endeavour to ease the transition to this community for those dispossessed from other support groups, BB will remain true to its core principles.

 

For example, where some other benzo forums had topics like 'what's your worst withdrawal symptom', we created our Accentuate the Positive board. Where members of other forums expected 'taper and withdrawal guidance from a team member', we have always made it clear that the responsibility of our team is to maintain order, organise content, and take care of technical issues. After all, what else would the titles Moderator and Administrator indicate? Where other forums might have followed a very particular withdrawal method, we are open to all medically safe and patient-centered approaches to quitting benzodiazepines. It is for members to provide 'support', and generate the bulk of information and content. And, most importantly, irrespective of reported failings of individual doctors, the expectation is that our members will consult with their doctors regarding their withdrawal from benzodiazepines and other medical needs. There are bound to be problems with some doctor-patient relationships, and (reportedly) many doctors routinely ignore benzodiazepine prescribing guidelines, but we are just a peer support group of non-medical-professionals. And, since we do not vet our members, even those members with medical qualifications must adopt a non-prescriptive writing style at this community.

 

We do not pre-moderate submissions to this forum. Members are trusted to read the rules, guidelines and policy documents, and to apply their common sense. There are about a thousand posts submitted to this forum every day - we cannot possibly monitor all this content. This is why there is a Report to Moderator link at the foot of every single post. If a post falls short of our rules, guidelines or policies (which all exist for very good reasons), members should report such infractions using the 'report' link. The vast majority of times when a member posts against policy, it is simply an oversight (either they neglected to read our rules and policies when registering their account, or they have forgotten or misremembered the guidelines), and we will either post or PM (Personal Message) a heads-up message to the member concerned, and edit or remove the post where appropriate (we rarely edit posts, and even more rarely do we remove posts, except where they seriously fall short of the rules). We rely upon members to self-moderate, report problems, and even gently moderate other members where appropriate. Simply: be nice and respectful towards your fellow Buddies; understand other members' right - in consultation with their doctors - to determine their own health care needs; and help other members to use the forum responsibly and as intended.

 

Currently, BenzoBuddies is the only large (English speaking) benzo-withdrawal support forum on the Net; we will necessarily cater to a very diverse group. Of course we try our best to be as inclusive as possible, but our core principles, as outlined in our Mission Statement, and Policy Documents are not negotiable. These policies have served us well, and I would argue, underpin a supportive, rational, and ethically-orientated benzo-withdrawal support forum.

 

The reason I am posting this now is not because of particular individual members or groups of members doing anything wrong. I have been receiving comments for some time (I'd say, the past two years or more) that the atmosphere of the community has changed as we have grown. Some of this naturally arises from a growing membership base, but I am convinced that some of this is the result of us being the 'only game in town' at the moment. Benzo forums come and go, so I imagine other benzo-support forums will come along soon enough; I never intended this community to be all things to all people (not that I think this is possible anyway).

 

I ask members to help support the community by reading our Policy Documents. Where you have questions or suggestions, please use our Feedback board. If things are unclear to you, they are probably unclear to other members too. I will try my best to explain why we do things the way we do, and members can reply with alternative perspectives. Although I've written all our policy documents, they have always involved a huge amount of input from the wider team, and feedback and suggestions from members too.

 

Thank you,

 

Colin.

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Very well said Colin.  There seems to be a need for a forum of this nature, whether for emotional support and/or tapering input.  Hopefully doctors will be informed and can help an individual with a reasonable taper plan when one decides they wish to stop taking a benzodiazepene.  Unfortunately, there appear to be a fair number of doctors (including two who I used to see) who either do not seem to understand many of the intricacies of benzo dosage, addiction and/or withdrawal and recovery. 

 

My former internist, for example, prescribed 5 times the amount of valium (10mg) that I actually "needed" to manage motion sickness and jet lag on a 3 week International trip I took back in 2008.  I later found a more competent neurologist who helped me taper off that valium appropriately.  The neurologist I saw, indicated that 2mg of valium would have been plenty for what I was trying to accomplish and that even with that relatively "small" amount of valium, they still recommend tapering at least a period of one to two months.  A second internist was convinced that I could add another prescription medication and stop taking the valium over a three period, not the best advice (at least for me) either. 

 

So my experience was mixed with regard to the medical community in the United States. That being said, where possible, I agree that it is best to find a doctor who is well informed and flexible with regard to prescribing benzos and the safe taper, withdrawal and recovery, even if it means going through several doctors as I ultimately did.  I also agree that what buddies post here ought to be taken with a grain of salt, ultimately making decisions with the counsel of a competent physician. 

 

Dr. Ashton was in my opinion a pioneer and on the right track with regard to managing patients who wish to stop taking benzodiazepenes.  As you mentioned, many of the former forums in existence on the internet, supported her work to some degree or another and undoubtedly helped many get through some very rough times.  The top down methods work for some, while others feel more comfortable in a more "democratic" environment,  with some necessary boundaries set for the safety of members.  That being said, with freedom to post opinions and a more bottom up or at least collaborative approach, there will sometimes be disagreements. 

 

Some folks may hold very differing views on any number of issues.  As an example, it can be confusing whether to use other prescription medications or supplements when going off the benzo vs. choosing to not use any supplements or medications at all.  Yet with some civility, a forum  can be beneficial to the majority.  There is no perfect solution to going off a benzodiazepene, in my opinion.  What works for one may not work for another.  Yet I believe more good is accomplished with having a forum like this available.  Is it possible that somebody may read something and misinterpret an opinion and make an unwise decision without consulting their doctor? Possibly.  But I think more good is done in having a forum where multiple views can be expressed and individuals can choose what is best for them.  Having access to more information is better than less information, in my view.  That being said, I can see how it can be confusing when somebody is struggling and might want to be led in a clear direction, but when feedback is so varied, it might be frustrating.  Perhaps one's family or physician can help sort out what is best. I commend you for keeping this site going, despite recent challenges.  I know it helped me a lot during a difficult time and it is nice to be able to give back now that I am off the benzo beast and close to 100% healed.

 

Best regards,

 

Vertigo

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Colin,

Thanks for the post. I think tjis forum concept is brilliant and more valuable than any means of investigation. I think peer support makes sense and doesn't burn out moderators wjo are likely not paid anyway. If a number of people have had some success with one thing or another its worth a looking inti. My dr agrees the support is fantastic. I'm lucky to have a dic that works with me. He's expressed how he wishes his patients would be mire involved with.their own care. He said that's partly why all the medd get doled out. When he suggests some do some ecercoze or eat a bit better or yoga....they just would rather take a pill. He works for a clinic so he has some guidelines he has to follow, not to mention20 patients a day.

 

Ultimately we are in charge of our nodies and our care. I think seeking out what has worked gor othees is not only responsible personal care taking, its mandatory to our overall health.

 

Thanks again fir the pist and mist of all providing a place for us to rally amd work on getting better and lifting oyr spirits, too. I hope you feel a sense of the magnitude of healing you provide by maintaining tjis site.

 

Sorry for typos, practically impissible on my phone.

With great gratitude,

Sarahnorris (no, not my real name)

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Sarah,

 

Thank you for your kind words and relating your doctor's comments to us. Yes, I think peer support works best.

 

Your phone-pad typos were brilliant and made me laugh - don't you go and edit them now! ;D

 

Take care,

 

Colin.

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Very well said Colin.  There seems to be a need for a forum of this nature, whether for emotional support and/or tapering input.  Hopefully doctors will be informed and can help an individual with a reasonable taper plan when one decides they wish to stop taking a benzodiazepene.  Unfortunately, there appear to be a fair number of doctors (including two who I used to see) who either do not seem to understand many of the intricacies of benzo dosage, addiction and/or withdrawal and recovery.

 

Hi vertigo,

 

It is unfortunate that we are the only benzo-withdrawal support forum of any appreciable size at this time. This is a less than ideal situation for those looking for online support. But, I would argue that the peer support model we employ is the most appropriate for a community such as ours, both ethically, and practically.

 

My former internist, for example, prescribed 5 times the amount of valium (10mg) that I actually "needed" to manage motion sickness and jet lag on a 3 week International trip I took back in 2008.  I later found a more competent neurologist who helped me taper off that valium appropriately.  The neurologist I saw, indicated that 2mg of valium would have been plenty for what I was trying to accomplish and that even with that relatively "small" amount of valium, they still recommend tapering at least a period of one to two months.  A second internist was convinced that I could add another prescription medication and stop taking the valium over a three period, not the best advice (at least for me) either.

 

Doctors are like any other group: there will be a spectrum of abilities from highly competent and thoughtful, right through to derisory and thoughtless. I would suggest though, the majority must be at least reasonably competent at both the knowledge and communication sides of their job. I have to confess though, I have come across two dreadful communicators in the profession - I would argue that despite their very senior positions, their inability to listen caused them to wrongly diagnose my medical condition. Frustrating as these personal experiences are, of course we should not draw general conclusions from specific anecdotal examples. Members should discuss all their medical needs with their doctors.

 

So my experience was mixed with regard to the medical community in the United States. That being said, where possible, I agree that it is best to find a doctor who is well informed and flexible with regard to prescribing benzos and the safe taper, withdrawal and recovery, even if it means going through several doctors as I ultimately did.  I also agree that what buddies post here ought to be taken with a grain of salt, ultimately making decisions with the counsel of a competent physician.

 

It is not sensible to dismiss counsel from a doctor, but then take to heart the musings of an anonymous individual on the Net. Members should take a verity of soundings from other members and sources, and raise any concerns with their doctor. If they are not happy with their doctor, they should seek another opinion. I understand there are sometimes practical difficulties with seeking second opinions, but the principle is correct, and I would never suggest otherwise.

 

Dr. Ashton was in my opinion a pioneer and on the right track with regard to managing patients who wish to stop taking benzodiazepenes.  As you mentioned, many of the former forums in existence on the internet, supported her work to some degree or another and undoubtedly helped many get through some very rough times.  The top down methods work for some, while others feel more comfortable in a more "democratic" environment,  with some necessary boundaries set for the safety of members.  That being said, with freedom to post opinions and a more bottom up or at least collaborative approach, there will sometimes be disagreements.

 

Professor Ashton's experience with her patients is very relevant to this community. The vast majority of her patients had already failed to quit benzodiazepines, and my experience here informs me that the majority of our members have already experienced problems quitting when they arrive here. This does not mean to say that the Ashton Protocols are applicable to all, or even most members. It is clear that the majority of members follow direct tapers (without substitution with Valium). I actually spoke with Prof. Ashton about these matters a few years ago - she never intended that her protocols be applicable to everyone. Her patients were, on the whole, tough cases, where (usually) they had already failed to quit, and had been taking benzodiazepines for a protracted period. Members will have differing needs and expectations: this is why we support all patient-centered and medically safe approaches to quitting benzos.

 

Some folks may hold very differing views on any number of issues.  As an example, it can be confusing whether to use other prescription medications or supplements when going off the benzo vs. choosing to not use any supplements or medications at all.  Yet with some civility, a forum  can be beneficial to the majority.  There is no perfect solution to going off a benzodiazepene, in my opinion.  What works for one may not work for another.  Yet I believe more good is accomplished with having a forum like this available.  Is it possible that somebody may read something and misinterpret an opinion and make an unwise decision without consulting their doctor? Possibly.  But I think more good is done in having a forum where multiple views can be expressed and individuals can choose what is best for them.  Having access to more information is better than less information, in my view.  That being said, I can see how it can be confusing when somebody is struggling and might want to be led in a clear direction, but when feedback is so varied, it might be frustrating.  Perhaps one's family or physician can help sort out what is best. I commend you for keeping this site going, despite recent challenges.  I know it helped me a lot during a difficult time and it is nice to be able to give back now that I am off the benzo beast and close to 100% healed.

 

Best regards,

 

Vertigo

 

We could operate a community where members were expected to follow a particular path. I could even make an argument for this: that we are here to help people that wish follow a particular protocol or taper method. However, this would potentially misinform members and visitors regarding their options. And, given that there are few online choices for benzodiazepine withdrawal support at the moment, I'm sure our members appreciate that they can discuss here all the various options available, even methods that I would find highly questionable in mos cases (such as rapid detox). It should be remembered, we are a discussion forum. So long as members remain respectful towards other members (this certainly includes honouring their right to determine their own health choice in consultation with a doctor), nearly any opinion might be expressed. Where members usually trip up with this is when they try to force their view upon other members by employing a prescriptive writing style and language. I accept that some members might be confused by the options, but I will not allow this community to be narrow in focus. It is not our place to restrict the options available to members.

 

The Alternative Therapies & Supplements board exists to allow member to discuss products and therapies that fall outside of the mainstream; I don't wish to see such discussions appear on the regular boards. Much of what might be discussed there will have little or no scientific basis (some of the therapies and treatments even might be dangerous - that's why I have posted such a strong statement in the sticky notice to that board). I don't 'support' the board at all, but members often happen upon such information at other benzo sites or on the broader Net - it is better that they have the opportunity to discuss these therapies with those that might debunk them. No doubt, some discussions there will be useful to some members too (a supplement to treat a deficiency, for example), but it is not for me to determine which therapies/supplements are 'good', and which are 'bad' - this should be determined by members through discussion.

 

I've probably gone a little off the subject.

 

Thank you for your comments, vertigo.

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Thank you very much for this, Colin.

 

I'll try to be more careful about not sounding so "prescriptive."  It just seems like so many people are asking for that! But please let me know if I err too much in that direction. Some of it is just my logical, analytical personality--it's how I talk.  I'll try to remember to tell people that my ideas about things are just how I happen to approach it, and they should just take them into account along with the other ideas they hear as they are figuring out what's going to work for them.

 

Although I'm often dismayed by the ignorance of doctors, I think I'm pretty good about encouraging people to find a benzo-wise doctor to work with as soon as they possibly can, but let me know if it sounds like I'm doing otherwise.

 

Thanks very much for your commitment, and for applying your intelligence to this much-needed project.  Hopefully more boards and/or support groups will arise before long.

 

--Rhi

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Colin,

 

Despite the gentle reprimands you have doled upon me (which were all deserved :) ).  I think you are the bee's knees.  Thank you for being here and doing this.  I'm not sure I could have navigated this without what you provide here.

 

So from my heart, again...Thank you.

 

WWWI

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Thank you very much for this, Colin.

 

I'll try to be more careful about not sounding so "prescriptive."  It just seems like so many people are asking for that! But please let me know if I err too much in that direction. Some of it is just my logical, analytical personality--it's how I talk.  I'll try to remember to tell people that my ideas about things are just how I happen to approach it, and they should just take them into account along with the other ideas they hear as they are figuring out what's going to work for them.

 

Although I'm often dismayed by the ignorance of doctors, I think I'm pretty good about encouraging people to find a benzo-wise doctor to work with as soon as they possibly can, but let me know if it sounds like I'm doing otherwise.

 

Thanks very much for your commitment, and for applying your intelligence to this much-needed project.  Hopefully more boards and/or support groups will arise before long.

 

--Rhi

 

Hi prhiannon,

 

I wasn't aware that you strayed into a prescriptive style of writing. I know, it is not always easy. If you did not read the linked Policy Document from my opening post, please check out the following; it might prove helpful.

 

http://www.benzobuddies.org/forum/index.php?topic=25837.0

 

Take care,

 

Colin.

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Colin,

 

Despite the gentle reprimands you have doled upon me (which were all deserved :) ).  I think you are the bee's knees.  Thank you for being here and doing this.  I'm not sure I could have navigated this without what you provide here.

 

So from my heart, again...Thank you.

 

WWWI

 

Hello WWWI,

 

Thank you for understanding. But, what I had failed to mention (before now), is how much I appreciate your ready wit. ;)

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Hi Colin. 

Thank you for taking the time to respond to my comments.  I agree with most everything with one caveat.  Sadly, many come to forums after having gotten poor or less than great advice or information from a doctor or other medical professional.  In my own case, I instinctively knew, for example, that when an ER doctor told me to take a particular medication for vertigo a few years ago, that it was not likely going to help the dizziness but only diminish the nausea symptoms.  Sure enough, I researched it and found it on the internet and later confirmed with a neurologist.  That same ER doctor told me that the vertigo could not be caused by the cessation (i.e, c/t) of valium three weeks earlier when several sources on the internet and another doctor I later saw indicated that it can take up to three to four weeks to process out valium from the body. 

 

As you know, the internet is a strange thing.  It can be very helpful at times, yet sometimes one might begin to feel overconfident and believe too much what one might read there, including here on this forum!  I think it is always a good idea to cross check and look for multiple confirmations from a variety of sources regarding a particular method, supplement or any course of action one might be considering.

 

  In regards to a major decision such as tapering, I would try to find at least two to three similar views from different sources and hopefully confirm with a medical professional as I did regarding my experience with vertigo.  In some cases, there is no definitive answer, as you indicated.  One method may be the right way to go for one person and it may not be for the next. 

 

I believe your policy of non prescriptive posting is a good one.  Everything should be taken with a grain of salt.  Here is one interesting internet story for you.  About five years ago, a doctor "advised" my father to take a very strong chemotherapy approach to his cancer.  I had read on the internet about a much milder form of treatment and asked his doctor the next time I was in town about the milder approach.  That doctor got very annoyed with me and was very sarcastic about my finding a treatment "on the internet." 

 

In my view, a doctor who is unwilling to consider alternative approaches or who makes fun of a patient questioning his or her authority, is a sign that it's time to switch doctors or at least get another opinion.  We did and sure enough, we found an oncologist who was willing to try the milder non chemotherapy treatment.  Six years later and five remissions later, my father is almost 90 and has been successfully treated without harsh chemotherapy.  I think the lesson here is to not be afraid to question our doctors and to get 2nd and 3rd opinions.  Doctors are only human and are prone to mistakes like the rest of us. 

 

Thanks again for what you do to keep this site available to so many who need it,

 

Vertigo

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Thank you Colin and everyone who responded to this post. It makes me feel even better about coming here. I would not have had the strength or the knowledge  to quit if it wasnt for you all. I  did follow Prof . Ashtons protocol but tweeked it a bit. With the input of several people, I managed to understand the complexities of this process. Under duress to say the least , it was the compassion and most of all the standards which you hold this forum to that made it all come together. Thank you is the least I can say to you. My life is my own now and I am on my way to being 100% recovered.
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  • 2 months later...

...in the most positive meaning possible!

 

As I have now been off the meds for almost seven months, I don´t feel the need to return or participate as frequently as I used to during,  and in the first months, after finishing the tapering.I think that the model, if I can call it that, you are running here at BB is both sensible and no nonsense ant that was what made BB my choice.

 

Like I say when I am ,,preaching´´: Go to BB, it´s under good administration; ***** is instantly removed and if people are misposting topics, it´s corrected.

 

Again, thank you and all those who have been there for me, I never thought I would get here. I shall spread the word wherever I go  :thumbsup:

 

Lexotania

Edit: profanity removed

 

 

 

 

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Sorry, I did not realize that this was categorized as profanity. It's the first time I have been reprimanded in a forum and since I am a middle aged housewife this is a milestone  :smitten:
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Sorry, I did not realize that this was categorized as profanity. It's the first time I have been reprimanded in a forum and since I am a middle aged housewife this is a milestone  :smitten:

 

lol

 

That's not a reprimand. Just a reminder.  :)

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  • 2 weeks later...

Colin,

Thanks for the post. I think tjis forum concept is brilliant and more valuable than any means of investigation. I think peer support makes sense and doesn't burn out moderators wjo are likely not paid anyway. If a number of people have had some success with one thing or another its worth a looking inti. My dr agrees the support is fantastic. I'm lucky to have a dic that works with me. He's expressed how he wishes his patients would be mire involved with.their own care. He said that's partly why all the medd get doled out. When he suggests some do some ecercoze or eat a bit better or yoga....they just would rather take a pill. He works for a clinic so he has some guidelines he has to follow, not to mention20 patients a day.

 

Ultimately we are in charge of our nodies and our care. I think seeking out what has worked gor othees is not only responsible personal care taking, its mandatory to our overall health.

 

Thanks again fir the pist and mist of all providing a place for us to rally amd work on getting better and lifting oyr spirits, too. I hope you feel a sense of the magnitude of healing you provide by maintaining tjis site.

 

Sorry for typos, practically impissible on my phone.

With great gratitude,

Sarahnorris (no, not my real name)

 

Sarah

 

Thanks for giving me a big laugh with some of your unintentional mistypings!  The style reminds me of a certain character in TV programme we used to have in the UK called "'Allo 'Allo" ! Colin will know what I mean.

 

Thanks Colin for the great site - I am doing well but dip in now and again as still need support and offer it where appropriate.

 

Angel

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Colin,

Thanks for the post. I think tjis forum concept is brilliant and more valuable than any means of investigation. I think peer support makes sense and doesn't burn out moderators wjo are likely not paid anyway. If a number of people have had some success with one thing or another its worth a looking inti. My dr agrees the support is fantastic. I'm lucky to have a dic that works with me. He's expressed how he wishes his patients would be mire involved with.their own care. He said that's partly why all the medd get doled out. When he suggests some do some ecercoze or eat a bit better or yoga....they just would rather take a pill. He works for a clinic so he has some guidelines he has to follow, not to mention20 patients a day.

 

Ultimately we are in charge of our nodies and our care. I think seeking out what has worked gor othees is not only responsible personal care taking, its mandatory to our overall health.

 

Thanks again fir the pist and mist of all providing a place for us to rally amd work on getting better and lifting oyr spirits, too. I hope you feel a sense of the magnitude of healing you provide by maintaining tjis site.

 

Sorry for typos, practically impissible on my phone.

With great gratitude,

Sarahnorris (no, not my real name)

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LOL,

Omg Angel, Looks like I was typing that with marbles in my mouth! eeek gaaads.... I can't beleive I even posted that to him. It was a nightmare on my phone, but I was so desperate for help. Computer repaired eventually, so much better..but still with typos...benzo brain has me at lobotomy speed  :crazy: Glad it made you smile...

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LOL,

Omg Angel, Looks like I was typing that with marbles in my mouth! eeek gaaads.... I can't beleive I even posted that to him. It was a nightmare on my phone, but I was so desperate for help. Computer repaired eventually, so much better..but still with typos...benzo brain has me at lobotomy speed  :crazy: Glad it made you smile...

 

 

 

:laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh:

 

Well done, Sarah.  That looks like a joke email I received a while back.  I am laughing for the first time in a while.  :laugh: :laugh:  Thank you!

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Thanks so much Colin....well said.....i chose this site because it seemed to be the most professional site and well received by all.

 

Peace.

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  • 3 weeks later...

I am a refugee from bw. This site is great to have. I do realize that there are more guidelines here then at BW, so I am learning the ropes.

 

No mater what, I am very glad to have the support, and the ability to read and post about wd.

 

Thank you so much Colin and the staff!!!!

 

good healing, fair winds

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