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Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 10/20/2004 10:20 AM (GMT -7)   
Hi Snohare,
Welcome to HealingWell and the CFS message board!  I'm brynn and I moderate this and the Chronic Pain board.  Also I participate regularly on the FMS board.
 
So kind of you to reply to so many messages.  I thought I'd just start a new thread to welcome you, instead of replying to every one.  As you may have noticed, not many people ever come back, once they get the info they need.  Oh, I'm still glad to be able to help, don't get me wrong.  But it would be nice to have a fair number of regular members to keep the board interesting.  Maybe all your messages will help get people posting!
 
Wow!  North Scotland, I think you're the first HW member I've met from there.  I've "met" a few from England.   You probably get this a lot, but all I know of your area, I got from the Mel Gibson movie several years ago.  Gosh, I can't think of the name of it, but it was based somewhat on historical events in that part of the world, about a time before guns were invented, when all the clans united against a common foe, maybe England, or whatever it was called at that time.  Anyway, such beautiful scenery.  I'm sure you have your share of extreme weather, but what was shown in the movie was just awesome!  As was the music, or soundtrack!
 
Even though I know that CFS and ME are similar illnesses, I don't know nearly as much about ME as a distinct illness, as I do of CFS.  Just that they are similar.  I am surprised that there are no specialists there.  I would have thought there were a few throughout the UK.  Well, I imagine some Dr will come in to fill the void, as there must be a need for one, even if only the previous specialist's patients!  Where I live, a Dr had taken it upon himself to become the local "guru" for CFS, over the last 15 to 20 years.  Recently, though, he took a job in another state, and his patients were literally having panic attacks!  But within a couple of months, another specialist moved into the area to take his place.  So maybe it won't be long before the same happens for you.
 
Sounds like you and I might be "birds of a feather".  I am a bit of an "armchair" scientist, myself.  Having studied plant science in college (botany, forestry), I've always had an interest in science.  But since becoming so ill, out of necessity, have learned a lot about medical science, especially about my own illnesses.  It's like I have to learn everything myself, so that I can keep my Drs honest.  About CFS, FMS and chronic pain in general, I do know more than my Drs.  It's a sad state of affairs, the world over, and I know we're ALL praying for some great breakthrough, at the earliest possible time!
 
Well, thanks again for taking the time to post.  Hopefully it will draw others to the board, as well.  But even if not, I'm glad to meet you, and look forward to getting better acquainted.  Take care.
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/20/2004 4:51 PM (GMT -7)   
Hi Brynn !
Great minds think alike, I was just about to post you, you being the "main man" and all as it were !
Speaking of which I gather you're not. Oops, sorry ! I've just been down to Wales for the first time where the name "Bryn" is male - should've guessed the extra "n" stood for something but Welsh is such Hell for dyslexics I kind of switched off my mental spell-checking apparatus. (As the witch said when a customer complained his girlfriend had started work in a glove store.... tongue )
Nice to know that you have seen "Braveheart", a good film about William Wallace but Hollywood kind of ignores the impossibility of breathing with no diaphragm at the end....funnily enough I was participating in a ceremony to honour him just the other week (lotsa kilts, that's why I got "drafted" in, eyes   I come from a very traditional Scots family.) What you probably don't know is that William Wallace was enormously tall - about seven feet - which made Mel Gibson a bit touchy...apparently he had to stand on boxes a lot ! :-)
Anyway, the burning questions I had for you were actually all about "Netiquette" on these forums, me being so new and all. For example, is it considered intrusive to post as many reply as I did ? I felt kind of like a social butterfly at a buddleia-grower's convention....but as the NHS attitude here is there is no Chronic Fatigue Syndrome, therefore no need for specialists, therefore no diagnoses, therefore no need.... like you I've been researching hard for years now. Let me tell you, your tips are a gold mine for me. yeah
Any tips on the social rules here ? I am expecting to hang around. 
 

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 10/21/2004 12:01 AM (GMT -7)   

Hi Sno'
Oh yeah, Braveheart!  That's the movie I was talking about.  LOL!  Yes, Hollywood tends to take the easy way out when dealing with what they see as minutia!

No, it's no problem that you "jumped right in".  I've been struggling to get this board more active, and my comments were more to prepare you for the fact that you might not get many replies.  I am glad to hear that you hope to stick around for awhile, and I'm sure it will be helpful. Part of the problem is that so many people with CFS (here in the US) also have FMS.  And the HealingWell FMS board is pretty active, so new members, I think, may just feel "at home" there.  But I haven't given up.  LOL!

Interesting, that's the first I've ever heard Bryn attributed to either the masculine or feminine.  I've never really known what it means.  My mom always told me that my dad invented it.  Although I think that is entirely her spin on it.  I'm aware that the name Bryn exists, other than just my name (which is Brynn)and that it has it's origins somewhere in the UK.  But I think my mom never knew that it is a real name.  She and my dad had this deal about naming their children, that she named the boys and he named the girls.  It was the only way she was going to be able to get away with naming a son, a Jr., to which my dad was strongly opposed.  I guess full control in naming his daughters was what it took to allow my brother to be named a Jr.  You wouldn't believe her antics in trying to get my brother to name his son III (the 3rd), to which he was strongly opposed.  But alas, she had no leverage with my brother!  I never really thought about it before, but I suppose I could actually do some research on my name.

As far as "social rules" here--generally the "netiquette" that you mentioned.  Here is a link to our Rules and Guidelines (which are supposed to be read before joining)(so you may have already read them):
http://www.healingwell.com/community/?m=106997&f=46&p=1#m106997  Other than that, all the boards at HW tend to be VERY sincere, warm and helpful--almost to the extreme, it sometimes seems.  But we don't expect members to follow any prescribed behavior pattern.  Just be yourself, and keep it real, and I'm sure you'll be warmly accepted.


Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/21/2004 9:20 PM (GMT -7)   
Greetings from the Frozen North !
While I remember (see the Crohn's Disease thread on that one  eyes LOL ) I have one more etiquette query. What causes the disappearance of a post in  a thread ? What actually decided me to register onto healingwell.com was a post on the anxiety panic disorders forum about someone who was suffering from repeated/lengthy periods of unconsciousness. My answer to this was posted, but has since disappeared with nary a word. I wonder if it is a case of "too much information" given the level of  health related anxiety in the forum's user community, or have I unwittingly infringed a rule despite reading the rules first ? How do I set about finding out tactfully ? confused
On a CFS topic now now, I note that there are many more visits to threads than posts on this forum. I'm guessing that CFS sufferers are inclined to not have all their concentrational marbles ( ME is particularly notorious for this - sufferers often can barely read, never mind write); are the names posting on the MFS forum the same as pop up once here, or do you think there is an iceberg problem here ? I must say, I think you and I are unusually lucid for our "kind".  ("All the world's mad but me and thee, my friend, and I'm not too sure about thee" tongue LOL)
If you saw me on a bad day, you'd know what I mean - takes two hours to make a cup of tea. Write a post ? No chance !
On a lighter note, you have a caterpillar named after you here in the Granite City.
( A friend tells me it's a moth member of the Geometridae/inchworm family, so called "because it measures the world as it wriggles along". (I always thought the world kind of zooms...LOL)
I left some plants outside recently and when I took them back in I found a zonal pelargonium had a little green stowaway tucked very unobtrusively under a leaf. Well, I couldn't kill it, I'd always have wondered what it was going to grow into...and I didn't think it would sit still under a microscope even supposing I could tell the difference at this stage, so a dual-sex name was needed. Well, it was obvious, wasn't it.... yeah Bryn(n) was christened.
The only thing now is, Bryn(n) is now on his/her second leaf, and I'm trying to establish a layered plant here. nono If only I hadn't sprayed my terrarium with fatty-acid based bug killer, I'd deport him to a land of milk and honey.... sad What do you reckon, anything in a cheese plant to upset his/her stomach and create CFS ? (Wouldn't want to get too off-topic here. tongue )

mscarrot
New Member


Date Joined Oct 2004
Total Posts : 15
   Posted 10/23/2004 3:31 PM (GMT -7)   
Hi snowhare,

welcome to this nice friendly and warm board !!. thanks for writing my guestbook (I asume it was you?).

Let me introduce myself shortly: I'm Paula, 32 years old, living in Almere (near Amsterdam, just moved out from that big city recently) in the Netherlands, so only a couple of miles water between us (lol)

I have CFS or ME, just call it watever you like, it doesnt matter since there still is no cure right :), and recently diagnosed (unofficialy by a chiropractor) with FM as well.

I am new here also, mostly on the FM forum sneaking, reading and so.

Since my work is not going well (well actually for 2 years unsecurity now) I am very exhausted and my pain is getting much worse due to -also- this fact. Futhermore I am trying to clean my house cause i have to sell it. But this time it is good news, am living with my boyfriend, who has his own house, who will be my hubby next may.
Hopefully it is understandeble that cleaning, getting old stuff out and so, next to 20 hour work is very exhausting. Not to meantion the nice wedding planning that is going on, but that takes a lot of energy also.

I am not a very frequent writer, since I have so much on my mind now, but I try to visit every now and then, and will try to keep up with this board also :)

hope you can understand my English (I really envy you cause of the place you live....wow, I always wanted to go to scotland one day......but hey, who knows??? I might do that !!!)

Sorry for the long story, but wanted to explain why i am not such a regular poster right now.

Love,

Paula
----------------------------------------------------
My website :
 

snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/23/2004 4:08 PM (GMT -7)   
Hiya carrot !
Well I'll tell you one thing, your English is better than my Dutch by a long chalk ! yeah   I know this for sure because I once tried to learn Dutch ( against the advice of Dutch friends who said, "Even the Dutch don't speak Dutch !" ) and I think I tied my tongue in knots tongue LOL
I know all about "unofficial" diagnoses, it's about all I can get here in Scotland. But on the other hand, my parents live in Braemar, (near Balmoral Castle, on Royal Deeside)....when I go to visit them the view of the hills from the kitchen window is superb...I can feel my blood pressure drop....there is a hill 100m from the house....forests with squirrels and birds and deer...I can chop wood ( I love chopping wood yeah ) - 2 lovely dogs to walk... oh dear, I think I am dogsick. (Like homesick but different. sad )
I think I am almost the opposite of you. I have just moved into the very centre of the city (Aberdeen) because I had problems getting to the shops where I must buy my special foods....I don't own my flat, I rent it from a friend (very lucky to do this); I am on benefits, so I am quite financially secure except when they "review my case", when suddenly all money stops until I win my appeal ( or I become homeless   mad  ); I do lots of voluntary work, gardening, conservation work, and with a homeless charity, but I can always just do what I am able to do. I live alone with lots of pot plants and lots of aphids, whitefly etc  eyes  , and of course in my spare time I and my friends rescue homeless cuddly toys. ( What I love about yours is that their faces all have personality. So many mass produced ones don't - or look really sad and miserable.)
Good luck with the house-tidying (my house is filled with a million bits of paper and DIY equipment), and in case I don't hear from you before then, have a Happy Halloween.   devil   smurf (The Post Icon is a pumpkin lantern, by the way:-) )

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 10/25/2004 10:57 PM (GMT -7)   

Hi again snohare,
Oh dear!  I could swear I had replied to this a few days ago.  I'm sorry.  I think I was going to look up the thread in question, on that board, before answering.  But I must have gotten side-tracked.

Moderators, the HealingWell administrator, and the member him or herself have the ability to edit and/or delete messages.  But the member can only edit and delete their own messages.  And moderators can only edit and delete messages on boards that they moderate.  Only the admin can edit and delete any message anywhere.  And I just mention all that fyi.

If any one of those 3 simply edit a message, but don't delete it, the message which was edited is annotated with the name of the one who did it (yours, the moderator's, or the admin's).  So you can always figure out who edited the message and ask them directly.  But if a message is deleted entirely, there's no way to know which of those 3 did it.
 
Typically, if messages are fairly substantial in size, a moderator will simply edit out any parts which are against the Rules and Guidelines.  For an entire message to be deleted on purpose, it would have to be blatantly offensive or critical, advocating for suicide, pure advertising or promotion, and other things mentioned in the Rules and Guidelines.
 
But based on the messages you have posted here, which have been entirely appropriate, I suspect the deletion was not done on purpose.  There is some kind of glitch which affects all the forums at HealingWell, that causes random deletion of messages every now and then.  So if you're sure of where you posted the message, and weren't perhaps in a different thread by mistake, when you posted it--it was probably an innocent "victim" of that glitch.
 
So speaking for HW, I apologize for this.  I know the tech people are working on the problem.  I think you're a great member, and an asset to the forums where you post, and I'm glad you joined.  I've enjoyed what few discussions we've had, and look forward to getting to know you better!  Also I really appreciate that you had the courage to ask about the missing post, instead of making assumptions or accusations.
 
Hhm, not sure I can say I'm flattered to have a caterpillar namesake, but since it's a cute little inchworm, I think it possibly might "grow on me"!  LOL!!  Has it cocooned yet?  That would be pretty exciting to see what the moth looks like!  I wonder if it needs to overwinter, before the moth emerges?  Maybe I'll do a quick search for Geometrideae.  I guess I am a little excited about the transformation, though.  It IS pretty cool how the caterpillar turns into moth (or butterfly)--I mean, when you think about it, it really is a rather miraculous process.  Ok, well let me know how my little namesake is doing.  I don't have any children, so I probably shouldn't expect to ever have grandchildren.  But maybe I can be a grandmother after all!  LOL!!  (Sorry, I'm kind of bad about puns eyes )
 
Well, once again, sorry it took me so long to reply.  Take care.

Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/25/2004 11:44 PM (GMT -7)   
Quelle relief.Actually I kind of guessed that you'd been side tracked....(Yes I've been lurking elsewhere, out of curiousity. Hope it's all sorted.)
Bryn(n) fairly gets about - I couldn't find him/her anywhere on the plant, not on the coffee table, floor...s/he was found crawling up the drapes. Well, needless to say, I was determined it wasn't going to be curtains for our little friend tongue , although I have to say I was very tempted to see what kind of mileage a caterpillar can get from one humongous leaf eaten in a single sitting. (Where does it all goconfused  )
Certainly did some mighty impressive gymnastics when I put him/her onto the mother pelargonium; leapt from one leaf to another in one mighty stretch, like a tiny lime green rubber band with a death wish....must've read your pun !  eyes  
Actually I understand the punning thing entirely. nono No doubt it stems from your original scientific training, spread throughout your life as you branched out into other fields, and will have to be rooted out before it takes over - so weed hope anyway - to everyone's releaf. tongue
I'm trying to kick the habit myself, I find it's worst when my blood sugar is swooping or soaring, it's practically an uncontrollable nervous twitch then. Blame Wernicke, it's his area of the brain being hyperactive that does it.
FYI, Bryn(n) is totally self-coloured, lime green all over with head and tail horn only slightly different in colour; about 1cm in length; when disturbed curls up and drops to the ground; spends a lot of time hiding motionless under leaves where invisible; and I think has just invaded the terrarium...Couldn't find any info on caterpillars like this in my only Lepidoptera handbook, do you know of a ButterfliesR'us website ? (Heard there was one advertising under the counter bees from hive rustlers - turns out it was a sting operation... tongue ) Isn't that a pollen ?

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 10/26/2004 8:23 AM (GMT -7)   
Hhmm, yes, I do think I've met the pun-master! I don't know specifically of a website devoted to butterflies and moths. There might be one, you know one can find just about anything and everything one can think of on the internet. But even if there's not a dedicated website, there should still be plenty of info to be found. I'll let you know if anything interesting turns up!

Climbing the drapes?! Maybe the little thing was off to cocoon! You know I've always wondered what people who live in the far north do, to while away the cruel winter months.... I'm beginning to understand now, LOL! (no offense)
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/26/2004 5:16 PM (GMT -7)   

Funny you should say that, Brynn ! yeah

If so happens that pretty much all my family suffer from serotonin-receptor related illnesses, and I suffer(ed) very badly from Seasonal Affective Disorder, so hibernation is something I pretty much used to do. I mean, we are on the same latitude as Murmansk here; I went to a talk once where the researcher had sent out questionnaires with every bed that a manufacturer sold, then correlated the answer according to latitude. It turns out that at the latitude of Aberdeen and above, up to 10% of the populace have some of the symptoms of S.A.D. (SubSyndromal SAD, would you believe);I can tell you, from mid October through to mid April, I'm a log sawing machine !  smurf LOL

Mark you, pre-Prozac, I was climbing the walls. tongue (These SSRIs can be the rollercoaster ride from Hell.)

Back in the days before viral pneumonia hit me and made everything worse, apart from exercise the best cure was winter sports. The snow reflected whatever UV was going about, it was enough to give a real high. Ah the joys of a heavily dissected Sub-Arctic plateau... scool

Nowadays I take Prozac and plan joint Halloween parties with my tenement neighbours; the lights in the stairway are all kaput, so I thought some lanterns would make good atmospheric lighting.... devil  although obviously the overheads are going to be quite high. tongue

But I couldn't throw a lively party if it was a live hand grenade, so I think my flat is going to be quite safe for our little hammock-hauler.

P.S. Did you ever hear about the female apiarist who was sacked from the trade association ? It was evident that she was "Miss Bee hiving."

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