A Welcome Back Roll Call

[Peter B]

Greetings to all, new and old

I was just curious to see how many veterans of BT pop in every once in a while to check the status of the site. Kudos to John Lester for fighting the good fight. I'm sure I speak for all when I say "Thanks a bunch John".

I must be honest and tell you all that I was becoming a bit disappointed in the site prior to going down for various reasons. It's interesting to see the evolution of BT over the years. People come and go but 7 years ago when I first began lurking there were always the "core group". I don't need to mention names. Many are no longer around.

Wade "Delta T" Gates was the unelected grandfather of us all and I can only hope that the "mayor of Bugtussle" is doing well. Hello Al.

I'm interested in how long it will take the site to re-establish itself to a capacity which allows maximum benefit.

So, hello to all. It isn't an easy life we lead and I hope everyone has the coping power to 'keep on keepin' on"

Check in and say hello, if you have the mind to. This is the perfect opportunity for the myriad of 'lurkers' to register and contribute. I know from previous posts that many lurkers feel put off by the established relationships that are present. I know that we have all tried to make everybody feel as comfortable as possible but it isn't so easy when others here (or anywhere). have special friends whom they regularly speak with.

It is my hope that those feelings of trepidation will vanish.

That said, welcome back to everyone; new and old.

Pete

[keithy02]

still hanging in there with these horrible pn feet copd
live every day look around you and say thank got i am not
so bad off lot's others with more problems than some of us
:) :) :) keith

[Peter B]

Keith,
What you said about others who might be worse off is very true. With all the problems I've had in my history I always reminded myself of this. It never made me feel any better but, as I look back, it probably kept me from ever delving into that abyss of self pity.

Pete

[Paula Texas]

I didn't really post a lot on the old forum, but I was a member since 1997 or 1998, I think. It was like having an old friend that was available whenever I needed to talk, or just hang out and observe.:)

Peter B, I was glad to see you mention "Delta T". I think of him often and wonder what happened to him. When I broke my femur in 2002 , on top of all my other problems, he was so good about calling me to lift my spirits. I would love to hear from anyone with any info on him.

So, all you lurkers have a unique opportunity to join in and have the same status of "new member" like so many of us have now.

Take care to all!

[dadsgirl]

I just wanted to stop in and say Hi! I was reading at BT since 1998 and was finally able to register in 2001.

It's good to see people who remember Wade (Delta-T) I haven't talked to him for a while ~ but he isn't doing too well I don't think. I have his phone number though ~ and I should give him a call soon. If I finally get around to it with everything I have going on right now ~ I will give an up-date on him.

Love,
dadsgirl

[Peter B]

Dad's girl,

Please let us know if and when you do speak to Wade. I'm very interested in how he is doing. I know when I last heard from him, the integrity of his bone density was so poor, he could barely move without breaking something. What a horrible way to exist.

To think I have it rough sometimes. All I need to do is think of Wade and others like him.

Rough.

As always, I wish all, a pain free day.

Pete

[hummer]

I will add my hello.......

Wade, is the one who invited me to the chronic pain forum.....I have a soft spot in my heart for him.......and Al.......he gave me so much strength to move forward......

This place has meant so much to me......a hand to hold, when I was afraid....that light, shining out of the dark, when I was lost......

I have missed what was here.......for me, it falls into need....I have had to live my life, without......it makes for a more frightening world............I have withdrawn.....but I will speak, for a moment here.........

Blessings on us all.........
Hummer

[cindybear]

Yes, this place , My second home, was missed very much..But I'm glad it's back and thank J.L. for all he does for us..
There isn't much going on here the usual...My head pain is never ending....!!! I've got a great Pain Doc..I just started getting Disability a couple months a go. SSDI and Medicare...Still awaiting my backpay..It's for over 5 years...I can't (and my laywer ) can't get it through -baltimore,MD- That I never received any SSI..So convincing them is another thing...They say that is what they are waiting for...But I've got 2 checks of SSDI , will be 3 , tomorrow..Hmmmm, I just don't understand..How the system works. And I don't want to know after all these years of denial and Appealls..But thats a different story....
I've seen alot of Names that I remember..It's nice to see everyone coming home..I'll be getting my inoperable brain aneurysm checked in Jan. A angiogram..Checking for growth..I know it's pretty far away Yet..But I haven't had it checked all year this year..Last year , had it checked 4 times..Scary....I just hope it hasn't grown again..I just don't know what we'd do..?? Hugs, Everyone, You all were missed, Cindy

[Don Henry]

Hi all glad to see BT back and running I hadn't checked in in a long time and thougt that maybe it folded and what a horrible thing tha would be. I too go back a ways but mostly lurked. I am also interested in seeing how Wade T is, my wife is especially anxious to find out as she was made to feel so very welcome by him.

Has anyone heard from Halo-ram (Jeff). I stopped lurking and talking with him and I think he got tired of posting here. Or maybe he changed his handle?

Anyway glad to see BT back.

[cre8tivewmn]

I am back part-time. I got dramatically worse just when I needed support (via braintalk ) the most, so I had to find someplace else. I also hang out at disability support circle chatrooom on TalkCity a lot.

It is good to see everybody back and I hope to see more of you in the future.

[Quahog]

I can't see how I missed this post.

Oh well still here alive and kicking. Actually I'm the one who's getting kicked :p

Later

[Boopers]

Hello Everyone,
Thanks Pete for this thread. I am so thankful for JL getting BT up and running again. I have only been a member since 2004 but it feels like I'm home again. I have been helped many times on here and appreciate each and everyone of you.
Thanks,
Linda:)

[LeslieRN]

Greeting from Texas!!

Talk about chronic pain- spinal pain, fibro pain, RSD pain and I am recovering from my right knee replacement and need to heve the left one done the end of the month UGH :eek:

Now it is raining and they say it will rain ALL DAY.:mad:

But Hubby biught 2 bikes and we ride as much as we can to streghten both legs- OUCH that first rotation of the pedal to where my right one is really bent- usually it doesn't hurt like this but I have fallen twice - Ortho doc says I can't hurt the knee since it is metal but the ligaments and muscles around it can be sore!!

I have to have the left one done now since it is hurting like the other one did AND whe I try to go down stairs- I feel crunching and pulling in the left KNEE I don't know what that mean but I need to be recovered by Dec 27 when we leve for Hawaii!!:D

Hope everyone is doing well and we can always hope for pain free days.

Leslie

[Headspin]

Hey Everybody,

Some of you may remember me, some of you don't. I was really active here up until a year ago. Back in July, I caught what seemed to be a cold. Then one day, I was rushed off to the hospital by ambulance because I quit breathing. For the next 2 weeks I fought for my life while in a coma in the ICU. I had a septic form of pneumonia, a staff infection, and strepp all at once. The doctors were sure I was going to die. But, little by little I started to get better, and eventually woke up. I was paralyzed, and had to go through 6 weeks of grueling physical therapy (2 weeks at the hospital and 4 weeks at a nursing home) before I could walk again. I am at home now. I still have to go in and get checked up on, and I am much weaker than I used to be. That is my first time facing death that close up.

[Wittesea*]

Just popping my head in the door to say Hello :)

I don't post here much anymore since I have become so active at the braintalk2 (which will soon have a new name) forum.... but I did want to poke my head in the door to see old friends and wave hello :D

I hope everyone is doing well.

Take care,
liz

[uvamomb]

Just wanted to let you know that I had not been around too long when BT went down, but I was always welcomed with open arms and answers to my posts asap. I missed each of you so much. I do hope the old info can somehow be retrieved.
Anyway, glad to be back, pain and all, and want to let you all know just how much you are thought of by me!!!
Hugs,
Kathy:) :o :D

[Peter B]

Craig,

Wow.
Been there.
It sucks.
Congrats for pulling thru.

Weren't you wheelchair bound before you went thru this ****?

Pete

[BlueLakeBlue]

I'm the wife of a hubby with Chronic Pain.

This site helps me to keep in touch with what the medical field has to offer.

This site helps me live with a person with Chronic Pain-

-reading about what others on this site go through- year to year-

month to month- day to day- even hour to hour-

There are so many comparisions that every cp'er does or will go through with

their Chronic Pain- I have found it here-

A big thank-you to everyone that makes this forum just that . . . .

[jaded2nite]

WOW..what a great surprise. I figured I would try braintalk after about a month of not bothering!!

I am happy to see we are up again!!! I mostly posted on spinal disorders, but will be posting here much more!

I am sad to say that my #2 lumbar fusion was not a great success and I am in pain levels in the 7-8 range!


I don't know if anyone remembers me...but I sure do "see" some familiar names!

Have a great night all!
Dottie

[Boopers]

Hi Jaded2Nite!
Yes, I remember you. Good to see you back.:) I'm sorry your second fusion didn't go well.:( I hope your pain will lessen. Hope to see you more.
Take Care,
Linda

[sallyb]

Hey, Everybody. Used to be a regular a year or two ago. Had just gotten that it was hard to sit for any length of time...i.e.email. But, I am trying to get on once in a while now. Have missed it....and all of you. Miss a bunch that are gone.

I told about my trip to see my daughter at her Army Basic Training graduation on the thread called, "Sally, Sakky", if anybody wants to hear.

My meds over the years removed the enamel from my teeth, and now all I have are nubs that are rotting in the sockets. Prior to hurricane Katrina, I had started at the LSU School of Dentistry to have them extracted and to have plates made. Somehow, I have gotten lost in the system, phone calls are not returned, and I am going through **** with my mouth. Right now, the left side of my face is swolen, and I am running fever. My only possibility of relief is when I burn my mouth with that terribly HOT mouthwash!!! There are no "charity" dental clinics here anymore...just LSU in Baton Rouge. I am on disability. Any ideas?

Well, enough about me. Hope everybody has a better day than you have had in a long time!!! Really!!!

love...sally

[Peter B]

A plea to all of you who took a peak but didn't say Hi. Please say hello.
If for no other reason, then to put a voice to the reader in hopes that it makes people feel like what they say, is being heard.

Just a suggestion.

Pain free days,

Pete

[sallyb]

I'll swallow a pill to that!!!

[Peter B]

You are too funny, Sally.

Pete

[BlueLakeBlue]

Where is everyone, stop in and give us a hello, if you can, :confused: There seems to be alot of people missing. :confused:

Blue :confused:

[Pamster]

I'm back but haven't been posting much in the CP forum, haven't been able to due to time constraints. I've been writing alot lately and working on getting my stuff published so that takes up a lot of my free time. It's so nice to see so many familiar faces again though, I am so grateful BT is back. It's great to be home. I am definitely here to help it rebuild. :)

[wildpinky]

hi, i made it back here...sure missed everyone...

[LKAHMS]

Hello everyone.....I read every now and again when I have the chance...have been a member since 99.
Good to see some familiar faces/names.
Kimmy

[tenacious]

i haven't posted on this forum in many years........i am soo happy to be back. help me, please.

what is braintalk 2, and how do i get to it?

[Pamster]

Hi tenacious, welcome back. :) Braintalk 2 was set up during the braintalk outage over the summer but it's been renamed. I don't have the url anymore so I can't help you get there. But you're welcome to post here and share your thoughts with all of us. :) Nice to meet you btw. :)

[tenacious]

thanks for your reply; it is nice to meet you also. if there is ever anything i can do for you, please let me know.

[Pamster]

Thanks tenacious. I reall appreciate that. :) The same goes for you, if you need anything like support like it sounds like from the topic you posted, you can count on my caring support and shoulder to lean on should you need it. :)

[illusion129]

Hey all!

I sure did miss BrainTalk while it was down :(.

I've been spending a lot of my time now over in the MS Forum due to my new diagnosis ("suspected" MS). I find the MS Forum to be very useful for me and although I do check back in at the Chronic Pain Forum I never really have anything to post :rolleyes:.

Glad to see that everyone is back here and especially that the forums are now up and running :D. If anyone was like me, I sure missed BT. It was just like losing a support group along with many, many friends. I was so happy the day I clicked on the BT link and it actually came up instead of displaying an error message.

Hope everyone is having a great time now that BT is back up and running and that lots of useful information is being put out there for everyone to read! :)

[Pamster]

I am so with you on missing BT when it wsa down illusion129, I really missed it every day, no kidding. I come numerous times a day and really need to feel that support in so many aspects of my life, from my son and his diagnosis of autism and my own chronic pain, I love BT and all the wonderful friends I've made here. Living without it made me really appreciate all of you folks, got nothing but love for all my BT friends! :D

[ErinENj]

Howdy everyone! Long time no see!

I know, it's been like years since I have been here. Things have been psychotic! I was wondering why my username had been deleted when I came on tonight, and I'm glad to see that it was because of an outage (not that I'm glad there was an outage, just glad that I didn't manage to delete it in some way without realizing it).

I'm still working on finishing school (for those who don't know me, I'm usually the baby of the group. I'm 25 and am in college. I've had CP for about 5 years I think..I lose track...it always seems like so much longer! I've been attempting to graduate for about 4 years, and now I've been in school for 7 total years...this BETTER be my last!!). I would have been done this semester, but unfortunately, fate had different plans. Last March, one day, I just lost all ability to stand up straight. (my spine is my issue) I thought I had just thrown something out and figured that some muscle relaxers would do the trick like they had the last time the same thing had happened. I was just going to go to my PCP once he could fit me in, since my regular spiney was on vacation, my surgeon was on vacation, and my PM doc was MIA. My PCP is really cooperative and is willing to help me with whatever I needed so I figured going to him would work and that I'd be up and around in a week or so. Well, two days before my appointment, I was sitting downstairs at the kitchen table with my parents at dinner. When we were done eating, I tried to get up. I couldn't. I have never, ever experienced pain like that in my life. Blinding didn't cover it. It was dumbfounding and just slightly terrifying. I just couldn't get my back to move in the way I needed. I had both of my parents, mom in the front pulling, dad in the back lifting, trying to get me out of the chair. It didn't work because it hurt so much. I managed to kinda fall forward onto my knees and get up that way. It hurt like nothing else, but I managed to get out to the car and off to the ER I went. The doc there didn't have the slightest clue what to do with me, so I told him that I just needed some muscle relaxers and I'd be fine, so that's what he gave me (I guess when you walk in on as many meds as we are and at the dosages we're at, they figure you know what you're doing!). After a week, without any success, and a visit to my PCP for more powerful muscle relaxers, we were back at the ER. I needed an MRI, but the only way I could lay down that long was with a lot of dilaudid in my system and the pills I had weren't going to cut it. So the ER doc, after way too much effort, got me the meds (which was no small feat because the PM doc on call that night was my old PM doc, who spent an hour calling me an addict and telling me he was going to take my meds away, all because I asked him to...oh gee, such a momentous thing I could never had expected him to do it...return a PHONE CALL!!!! :mad:) So they took the MRI and turned out that I had herniated the little disk matter that was left after my 3 surgeries. I have to say, I'm talented! I don't know what I did, but I don't know what I did the first time I herniated them, or the second, or the third, so why would this time be any different!

So now I'm just dealing with an increased pain level. I thought I had no life before. I go to school, am home by 1:30 at the latest every day, if not earlier, then in bed, stay in bed to do homework, and then to sleep to do it all again. Oh, one important detail for those who don't know me...I drive about 60 miles to school, and another 60 back home, 20 of which are one the most irritating, frustrating, infuriating road in NJ (there are NO words!). This road can make the calmest, most Zen driver into a road rage fanatic in minutes. I know, because that was me, before I started driving that road. So it's really stressfull on my back. The rest of the drive is okay, not great, but okay. I'm taking 4 classes this semester and 4 next, with an anticipated graduation date of May '07. I started there in Sept. 1999.

My med levels have increased to compensate a little, but they're nowhere near where they need to be. Kadian is 400mg/day, dilaudid 24mg a dose (usually 2 a day) plus lyrica, wellbutrin, and 2 sleep meds, oh and the zelnorm they put me on after my appendix/lymphatic infection scare turned out to be inflammed lympnodes plus constipation. That was a fun experience...:rolleyes:

And as you can tell, I tend to be pretty long-winded. What can I say, I'm a journalism major so I like to write! ;) :D And now that I have written all of that, I'm off to bed because my sleepy meds are kicking in and I like to heed their call, especially 'cause I love my bed! (Select Comfort...really nice! I can't complain about that!! :D )

It's nice to see some names I recognize, and nice to see new people to get to know!

[A Chronic Painer]

I'm a long time, now and then, poster with what has to be the world's worst case of heel pain (plantar fasciitis). I too lost all my teeth, due to the meds. Only 2 more to be pulled on the bottom, and I'll be able to get that plate. Sometimes I think my teeth problems have been just as bad as my feet, arrrggghhhhhhhhhhh!!!!!!! :(

I too remember the early days with Delta T, Al, and the rest of our Vets. Tomorrow is Veterans Day, don't forget to thank any Vets you may come in contact with. This is a very hard time for our currant Vets, fighting an unpopular war. Good Luck all you guys and gals in uniform !!!!

[Mray3810]

Hello all...was a member here from 1998-2002, I think...recent developments in my chronic pain saga have led me back here for support...God knows I need some right now...cancer/radiation/shingles led to trigeminal neuralgia/TMJ/mono from blocked arteries after radiation...I am a pained, weak mess right now...I am on Durgesic 50mcg + norco...the combination works only if I "cheat", which I'm trying rdesperately not to do...some days it's so bad I can't help it though...am trying to get dosage upped but meeting with considerable resistance from Dr.

I have been on pain meds for the last dozen years or so, and reached a sort of saturation/plateau last January, and went without for 10 days, during which I lost 28 pounds and wished I were dead...since then I've been on 1/4 to 1/3rd the previous dosage...twice the pain, though...I can understand why the dr. is reluctant to increase dose, but life has become pretty meaningless in this state...I have been on disability since January, and it doesn't look like I'll be going back to work any time soon...

Would appreciate any conversation relating to all this (sorry to ramble on so...), including prescription benefits to those without insurance (mine lapsed as I could no longer afford the premiums)...


Thanks
MIchael S.

[Mray3810]

guess I need to post in a different area...nobody's watching this anymore

[hoops2u]

Well Hello Everyone!

I have been gone for quite some time. I tried to log on this past summer and BT was down and I went off to other lands. Yesterday I tried again and realized much to my pleasure BT is back and running. I had no idea it was down a long time. But I certainly very glad all is back and running.

It did take me a while to figure out that I needed to re-register. I was hoops before, this time I registered as hoops2u, just in case my other hoops is still in the system someplace. Besides, it is registered at another email address.

I had been quite ill for some time but am beginning to have at least 25% of a life now. Part of my problem, I believe was, my pain management Dr. and my neurologist had me on massive doses of neurontin. After a bit of research on my own, I asked the pm to reduce & eventualy take me off neurontin. He gave me a flat NO. No reason. He was angry with me because I turned him in for some major unethical behavior. Then I asked my personal physician to titrate down and she was reluctant to hurt his feelings any further. So, I took myself down from that stuff. With each reduction of neurontin I began to feel better and better. I now am at the lowest capsule they manufacture, taken only at bedtime for seizure activity and I feel like a new person compared to the zombie I used to be before.

I am not saying to anyone at all to go off neurontin. It simply was not right for me.

Now, you people have me worrried about teeth. It never occured to me that my teeth problems were due to medications. I am not having major trouble with my teeth, but I am in the process of having 2 implants. I have always had little problems and have had some root canals and crowns prior to the meds. I'd like to believe this too is only temporary. EEGADS ! !:eek: I am going to call my dentist in the morning and see what he has to say about this.

Glad ya'll get to hear from me again.
Did I say that, i mean, glad i GET to hear from Y'all again ! !

Love to all,
hoops

[Bluey]

Anyone heard from Rider?
He was always nice to talk with.

[Bluey]

Thanks Hoops2U for the welcome

[ErinENj]

Sorry to make you worry Hoops!! If you don't have any pain, then it's entirely probable that everything is oky-dokey. However, as many have said to me, since we're all on pain meds and usually at some substantial dosages, how would we know when something hurt, or if we do feel pain, that we're feeling the true amount of pain?? I had a doc say this to me when I was in the ER last month for an appendicitis scare for the reason he refused to give me my meds for nearly 12 hours, so I was already going through some wicked withdrawls. I didn't rip his head off like I really, really, really wanted to, but he does have a point (I realized it later, but at the time I really didn't care about the pain in my side!)

If you're worried, best bet is to go in and just get a cleaning. They'll find anything then. You're probably fine. We figured this all out after my wisdom tooth (which i had been meaning to get taken care of...they didn't hurt all that bad) literally shattered when I was eating soft hash browns from burger king a few years ago. Since then, my dentist has noticed a serious downhill trend in the health of my teeth. At a cleaning about a year or so ago, he found 9 cavities. This last one was only 6, but it was also only 6 months later. We're hoping that through a regimine of anal-retentive brushing with toothpaste that DOESN'T have whitening (hard to find, but he says that it can do more damage, so it's a good tip for anyone else with issues) and a floride mouthwash/rinse. I don't know if it is working, but I'm hoping. It has made my teeth a great deal more sensitive, but hopefully, its just temporary and the next time I see him, he'll see a marked difference.

The biggest thing I can say is just pay attention to your teeth. I hate the dentist with such an amazing passion that words cannot come close to express (the pick thing....ugh..sends chills directly up my spine), but I don't want my teeth to fall out, so I have to deal. Luckily, my dentist has seen me for years, and he understands so he is liberal with the nitrous (which I get even at cleanings) and gives me some valium for every appointment, but especially for the hour-long filling and crowning appointments. Get regular cleanings, as much of a pain in the butt it is, take really good care of your teeth, and pay attention. I've noticed some cavities before even going in, so I've been able to get it early to where it isn't too bad. If you catch them early, they aren't so bad getting them filled. And I think we'll all agree that a filling is a whole butt load better than a root canal! ;) Just relax. I'm sure you're fine! But definately get checked out if you're worried. I don't know but there may be dentists out there who may specialize in treating CP patients. You never know, so if you're nervous about going, maybe try and find one of them. Or there's even sedation dentistry that I really, really want to look into. That way, they could just take care of them all at once and have it done with.

Best of luck and let us know if you get your teeth checked out and if so, what happens.

[tenacious]

Hello all...was a member here from 1998-2002, I think...recent developments in my chronic pain saga have led me back here for support...God knows I need some right now...cancer/radiation/shingles led to trigeminal neuralgia/TMJ/mono from blocked arteries after radiation...I am a pained, weak mess right now...I am on Durgesic 50mcg + norco...the combination works only if I "cheat", which I'm trying rdesperately not to do...some days it's so bad I can't help it though...am trying to get dosage upped but meeting with considerable resistance from Dr.

I have been on pain meds for the last dozen years or so, and reached a sort of saturation/plateau last January, and went without for 10 days, during which I lost 28 pounds and wished I were dead...since then I've been on 1/4 to 1/3rd the previous dosage...twice the pain, though...I can understand why the dr. is reluctant to increase dose, but life has become pretty meaningless in this state...I have been on disability since January, and it doesn't look like I'll be going back to work any time soon...

Would appreciate any conversation relating to all this (sorry to ramble on so...), including prescription benefits to those without insurance (mine lapsed as I could no longer afford the premiums)...


Thanks
MIchael S.

dear michael,

when i read your post, i felt that it could have been one i wrote myself. please know that i will support you in any way i can. as far as your rx's, i haven't read other's responses, but i warn you, do NOT pain $ for ways to get your meds at little cost, or no cost at all. what you can do, is call your pharmacist and tell them that you want the 800# for the patient assistance program for each med you are on. then you call the #, follow their guidelines, and work with your doctor's office (the nurse), and you could get what i received when i needed it.........a three month free supply of my meds, that could be refilled for a year, and then i had to re-qualify.

furthermore, you may want to call your local social service agency and see if they have a 'disability medicaid', which, depending on where you live, could make it so you only pay a $3 co-pay for each rx. currently, one of my meds that i inject once weekly totals around $2,800 a month, and i only pay a $3 co-pay, and that is it.

do you think any of these suggestions might help?

[tenacious]

Thanks tenacious. I reall appreciate that. :) The same goes for you, if you need anything like support like it sounds like from the topic you posted, you can count on my caring support and shoulder to lean on should you need it. :)

dearest pamster,

your post touched me deeply; i thank you and want to let you know that i also am a source of support for you too!!