if one wants to talk

[PJAMES]

if one wants to---is it best to----find someone and PM.

call someone who cares? post here? just keep it inside?

I am not being sarcastic or caustic.

I just have a lot of questions and a lot to say---And It may be me---But I really feel---Like I don't belong ---And that I bother you------

I just really do not know who to ask any of my questions to----Maybe I will just keep them inside----And please before----I am not depressed---K----And do not take that as I am being rude---

Thanks for your input if you chose to add any----

And if I should go away because this is not a great place for the 1 million questions forum to be---tell me---i will----Now that I have an answer----That opened the doors to many many questions---sorry----

OK I must start handicapping The Fairgrounds in N'orleans today....I am behind

[AfterMyNap]

Hey, P,

It's totally cool to ask all your questions! We all started somewhere as newbies and not knowing anything about this crappy disease. This place has tons of forums on all kinds of topics.

Don't feel out of place, shoot, when you think about it, NONE of us belongs here— no one banked on getting a disease that messes with virtually every part of us at every minute. It doth sucketh and there is simply no getting around it!

This Stumble Inn is where we come to mess around; a lot of us have had this disease for a lot of years and just can't take it so seriously anymore. Sometimes, just thinking about it drives me nuts. I think I can speak for everyone here when I say that every day presents us with issues we don't understand or like. Each day also presents us with opportunities to build on the positive, the humor, and our relationships.

Just jump right in, dude, the water's warm! :)

[Kitty]

Yeah....what Cindy said!! You're not bothering anyone, Pete.

My suggestion would be to start a thread on the MS Forum for each individual topic you have a question about. That may mean starting multiple threads but that's okay. Some of your questions may be things others have questions about, too, but just haven't posted about. This way, your questions can be addressed and issues won't get lost in a thread about multiple things.

Believe me, you're not alone and I think we've all felt alienated by this disease at one time or another. I just cannot dwell on it too much 'cause it gets me down....so I come to The Stumble Inn so I can be silly. But....I have a dx so that makes our situations much different.

Post your questions and let's see if we can come up with some answers! I'm always up for a challenge!!

[ali12]

Hi PJames,

As AMN said, you are more than welcome here and you always will be!! I'm sorry that you don't feel as though you fit in but please know we are all here for you and will try and help you in anyway we can!!

I don't have MS (although I do have a condition that is fairly similar and my nanan had Progressive MS) and everyone here has been SO nice and friendly and helped me more than they will ever know and made me feel welcome!! If it wasn't for these guys, I honestly don't know what I would do - they are all the best and have helped me in so many ways!!

Please don't feel that you can't ask any questions that you want to - of course you can and we will all be more than happy to help you if we have any experiences or just give you a shoulder to lean on when you're feeling down. Please don't stop posting - I honestly think it will help you to have someone to talk to and to be able to let your feelings out even though it might not feel like it at the moment!!

It really is up to you whether you want to post on the forum or whether you want to PM your friends directly - if I was you though (and you don't have to do this if you don't feel comfortable), I would post directly onto the forum as there are a lot of people there and you are more likely to get someone who has been through the same as you that way!!

Please know that we ALL care about you and want to help you if we can - we hate seeing you down and want to try and help you if we can and we will ALWAYS be here for you whenever you need us!!!

Take care of yourself and if you ever want to PM me, please feel welcome to!:hug:

[weegot5kiz]

Ok James spill it, whats up? maybe some of us have been where you are or are there now, you may also help others by posting and then they will see hey i am not the only one, and some of us may have a suggestion or two for what is troubling you, people dont bite, I was in a tailspin when i first met a lot of these wonderful folks, and i can not tell you how much they have helped me, dont hesitate, we are here

[Taffy]

Please feel free to post your questions. I know from people doing that, that is how I learn. Hey, I am still learning.:hug:

[lady_express_44]

The only thing that most of us have in common, when it comes to this disease, is the name of it. Even that might only be a temporary fact, until they figure out that perhaps we just have different variations, strains or diseases that cause similar damage . . .

Some of us have had this for many years and think we’ve seen it all . . . at least until someone comes along with a completely different set of circumstances. It’s not just the disease differences though; it’s cultural, coping mechanisms, attitude, prior life experiences, lifestyle, med choices/obstacles/limitations, etc., that makes each of us unique in our journey.

I think that’s why this disease can be so lonely though . . . no two people are exactly the same. We are all in our own place, that no one person can relate to entirely. The other thing is that we are all unwell at times, and even IF we think we can offer some wisdom, we don’t always have the energy or brain-power to do that.

The good news is that there are enough people here that at least SOMEONE can generally offer us guidance or support for each of our challenges. Hopefully that gets us through to the next obstacle . . .

Cherie

[SallyC]

What they said, Honey. Ask away..:hug::hug:

[NaeNae]

I have been there for you......I have answered emails....texts......phone calls. Have tried to give you good advice and help you out...right now I need ME time, sorry if you don't understand. I hope others here can help you....help answer your questions.....I am having several personal issues going on right now involving my children....my ex.....and I just lost one of my closest friends....please understand that it is not YOU, I just need some time before I can be of any help to anyone else.

[SandyC]

Pj, as you can see there are many here responding. I've read all of your threads and watched many respond so I am not sure why you feel alone. Maybe your just having a bad day and feel left out. Hop back on the horse and spin over to the MS threads and post away. Also, whenever someone cannot be there for you, there are many waiting in line to help out in that persons place. We are all in this fight and sometimes it's all we can do to take care of ourselves as well as others. :hug:

[ali12]

I agree with what Sandy said also James, I have followed most of your posts and have seen pages of responses to you from people on the forum so I can't really understand why you don't feel as though you "fit in" here!

From what i've seen, everyone has been really supportive to you and have tried to help and comfort you when you were going to the hospital etc. Maybe that's just me but I do feel that people have been there for you and tried to help you in anyway they can!!

Please always know that we are here for you now and always will be. It seems as though many people are going through rough times right now (I know I have been as my grandad passed away and i've been feeling ill) so people might not be able to respond to your posts straight away but whenever they can't, someone will always be there for you!!

Hopefully you're just having a bad day and you will be back to your usual self real soon. Please continue posting - I honestly don't know what I would do without this forum and i'm sure it will help you in the long-run also, even if it doesn't feel like it right now to you!!

[NurseNancy]

i agree with all the above.
of course we don't want you to go.
you're a part of the board now.
we'll be here for you the best we can.

and AMN is right, we all started here from somewhere.

read my signature line.
i firmly believe in it.

[Twinkletoes]

Sheesh, Pete! We're all in the same boat. Let's talk!!!

I'm no good at keeping anything inside, so I understand you wanting to discuss what's on your mind. Feedback is important because it helps us know that we're not alone.

Tell us about handicapping the Fairgrounds in N'Orleans. What's that all about?

[DM]

Hang in there PJ. One thing about NT is that you can post your feelings, questions, advice and even hugs and guess what??? Someone will always be along to respond. I always say "Tomorrow has GOT to be a better day". Keep us posted on how your'e doing.

[karousel]

Pete, this is THE place to be when you have questions -- no matter how many you have. We are here for you and there are so many people here who have such wonderful advice. I read all the posts, even if I don't have anything to contribute. This is where we all need to be - to support one another and know that we are not alone.

[Kitty]

Hang in there PJ. One thing about NT is that you can post your feelings, questions, advice and even hugs and guess what??? Someone will always be along to respond. I always say "Tomorrow has GOT to be a better day". Keep us posted on how your'e doing.


DM is right, Pete. It's amazing how you can feel like you're the only one suffering with a particular sx or condition but as soon as you post there's always several people who reply saying "I know exactly how you feel!" or "me, too!". You're never alone.

Please let us know how you're doing today, OK? :hug:

[braingonebad]

if one wants to---is it best to----find someone and PM.

call someone who cares? post here? just keep it inside?

I am not being sarcastic or caustic.

I just have a lot of questions and a lot to say---And It may be me---But I really feel---Like I don't belong ---And that I bother you------

I just really do not know who to ask any of my questions to----Maybe I will just keep them inside----And please before----I am not depressed---K----And do not take that as I am being rude---

Thanks for your input if you chose to add any----

And if I should go away because this is not a great place for the 1 million questions forum to be---tell me---i will----Now that I have an answer----That opened the doors to many many questions---sorry----

OK I must start handicapping The Fairgrounds in N'orleans today....I am behind


I'm not sure if this is what you mean but I'll take a stab at it.

Pm me. Ask in a post. You want my email? Pm me and I'll let you have it, okay?

Thing is for me, and maybe the same for you, the more down I am, the less connected I feel to anyone - here or IRL. I feel like a bother and like nobody likes me, I'm obnoxious and irritaing -(think i'll go eat worms).

When I'm in a good frame of mind, I know who my friends are, I know I like a lot of people and want to reach out to everyone whether I even know them or not.

It's got a lot to do with how much pain, how stressed, how uptight I am.

When you're happy, do you feel like you have friends here? Do you feel like we give a darn? When things are going better for you, does it feel pretty good here?

Ask yourself that, okay? And if it does feel good here, if you do feel like you have friends here, when you feel otherwise okay (well, as okay as you get, if you know what I mean, cuz I know it's tough Pete) then maybe you're just being too hard on yourself.

It's tough for you, big tough guy, to be vulnerable and let your friends know you need support.


Nobody is an island, man. You can be all kinds of strong, but nobody goes through this world alone. We all need others to be strong for us sometimes. You'll do that for us too.

Let us be there for you when you need to talk it out. You can move the fridge, okay?

:hug:

[Kitty]

Pete, please let us know how you're doing. You haven't logged into the site since Sunday and I'm a natural worrier.....just want to know that you're OK. Lots of us care about you! :hug:

[sabimax]

Hey there,

YES you should ask away?? and if not much for answers, then ask away in the answers questions part....but yes this stumble inn is for anyone to stumble in...feel welcome and hugssssssssss,sarah

[Junie]

I can relate to this thread..I am told to just jump in there and post so when I try to reach out to others whether its in response to someone or a info post that should be important, I feel like a thread killer, if I post on it then it will die off, happens too much for it to be a fluke....of all the ones I tried to either help or inform they just died off when prior to my posting it was alive and well!
I was at the other place and then I was one of the first members to sign up and watched it grow and other then a fewreg folks, no one much wants to know me it seems, is there any wonder I continue to be depressed? The only thread that I was even noticed in was in pet section. I took a lot of time and effort to write what I wrote and it makes me feel very sad that only 2 people on entire board even showed me I exist! I should be able to fit in just about anywhere as many things going on with me but its like trying to put myself into a puzzle that I am not meant to be in! I was very grateful for the post cards and I know I have still not sent them but I truly have had so much going on in my life I have not had the time or ability, but I did order 20 postcards that were about ill people! I do intend to still send them out, but I have been depressed for quite some time, overwhelmed by people living here and not helping out (now gone) and then 3 weeks of flu, and the never ending pain and I have an appt on the 11th and I plan to let them know the Opana Er is just not working for me! Then I go the very next day for my long awaited disability hearing so even though I am overwhelmed right now and in pain and depressed I still made the effort to connect and it just does not seem to work for me except a few in the private area which for that I am very grateful! Pjames, I get it and understand completely!:girl(sad):

[just drea]

Im new here to NT, and not dealing with MS, I have spinal issues.

I would like to suggest the chat room..it is real time, real easy, and several of my friends have been joining this site. We have chat time often....sometimes over coffee..sometimes for the afternoon while we are home alone and lonesome, or in the evening.

I hope to see you there soon..give it a try!

[Kitty]

I can relate to this thread..I am told to just jump in there and post so when I try to reach out to others whether its in response to someone or a info post that should be important, I feel like a thread killer, if I post on it then it will die off, happens too much for it to be a fluke....of all the ones I tried to either help or inform they just died off when prior to my posting it was alive and well!
I was at the other place and then I was one of the first members to sign up and watched it grow and other then a fewreg folks, no one much wants to know me it seems, is there any wonder I continue to be depressed? The only thread that I was even noticed in was in pet section. I took a lot of time and effort to write what I wrote and it makes me feel very sad that only 2 people on entire board even showed me I exist! I should be able to fit in just about anywhere as many things going on with me but its like trying to put myself into a puzzle that I am not meant to be in! I was very grateful for the post cards and I know I have still not sent them but I truly have had so much going on in my life I have not had the time or ability, but I did order 20 postcards that were about ill people! I do intend to still send them out, but I have been depressed for quite some time, overwhelmed by people living here and not helping out (now gone) and then 3 weeks of flu, and the never ending pain and I have an appt on the 11th and I plan to let them know the Opana Er is just not working for me! Then I go the very next day for my long awaited disability hearing so even though I am overwhelmed right now and in pain and depressed I still made the effort to connect and it just does not seem to work for me except a few in the private area which for that I am very grateful! Pjames, I get it and understand completely!:girl(sad):


Many of us have alot going on in our lives, too. And sometimes it's all we can do to hit the "thanks" button just to let the poster know that we've read the post. Sometimes replying just takes too much thought and it's exhausting. Doesn't mean we don't care....or acknowledge you.....just that we're in the same boat and some days just treading water.

Here's a :hug: just for you!!

[SallyC]

I hear you Junie and I do understand how you are feeling..:hug: It looks like you are in the same dark place, with Pete. A place, where you are hurting and you don't think anyone cares......but, here we are, all caring for you and Pete and others..

I am praying for you to be able to lift yourself out of that place and be happy again. Have you talked to your Doc about a proper AntiDepressent? Chronic Illness and pain cause depression, but with all the super ADs out there, a Doc should make sure you do not suffer too long.

I have been on one AD or another, for years, because of MS. I couldn't live, now, without them.

My good wishes and prayers for you, Dear Junie..:hug::hug::hug:

[kicker]

I think we all feel like thread killers once in awhile. But really, threads run their course and end. Sometimes we all are the last poster. All MSers are different but there's always something somewhere, sometime sharing my own concerns or making me laugh and spit coffee. Shoot, even the issue of putting on a bra with MS was discussed with great humor and in length at my old forum. Male or female sexuality, UTIs, urine and bowel issues etc. What a great place to discuss some issues in a very non-personal, non-threatening way. Everyone has "normal" problems and MS-related problems. I like to know I'm not the only one that way, feeling cruddy, feeling hopeful, who knows what tomorrow will bring. There are many names I read with affection, after all these years I feel I know them. At the few GTGs I've gone to, I feel I made a friend. Some posters inspire me, some do bring me down. It's my window to the world. I get to be a part of others who "get" it. Keep asking James, maybe it's a question others can answer or want.

[weegot5kiz]

Junie it takes time to get to know folks, but do not hesitate because you do not know us. Otherwise we shall never have the privilege to get to know you:hug: as for killing threads lol I get the feeling sometimes I do that too, after a certain number of threads ending with my last post lol yeah I have wondered hmmm what I do, its all cool dont fret none

when I first started to get to know these wonderful people, I worried a lot about should I say this or not, guess the old adage 'nothing ventured nothing gain' comes into play, cause it only took a wee bit of time till the flood gates opened up and I fell right in with the rest of the folks here, they taught me well

[Kitty]

There's always a last post to each thread.....and it has to be somebody, doesn't it?? I mean....with the exception of Daily Insights most threads do have a life expectancy. DI......it just goes on and on and on and on and on.................:D

[SandyC]

Shoot, even the issue of putting on a bra with MS was discussed with great humor and in length at my old forum.

Speaking of bras, I need to get some new ones. Mine are getting faded. :D

[Kitty]

Speaking of bras, I need to get some new ones. Mine are getting faded. :D


Now that's what I call "need to know" information!!! :D :D

[SallyC]

Well I guess we didn't convince Pete or Junie to stay and talk with us...:(

[jmiller]

Your never alone PJ on this board. Someone will answer your questions sometime, maybe not today but soon enough. Hope you stay, were all just one big family here.

Well I have to agree with everyone here, we are pretty much equal but with different symptoms. Some of our problems are the same and some not. However when we encounter a new symptom at least somewhere on this forum we can find an answer.

Finding answers to our problems I find is a whole lot easier here than trying to get a neuro to answer them. When I had a bad reaction to the COPAX shot, I got my answer here. If I were not a part of this board then I was sure my reaction was a heart attack, but I knew already it was just a bad reraction that would go away in 15 minutes or so. I told my dr and he said he never heard of it.

Were here for you, so just ring in and your call will be answered in the order it was recieved. Oh sorry got carried away with calling the VA.

[Kitty]

Well I guess we didn't convince Pete or Junie to stay and talk with us...:(


That's too bad.....'cos we're an upbeat bunch that can find the humor in most anything.....and also know when to offer a hug or a shoulder to cry on. I, for one, don't know what I'd do if I couldn't come here.