Remember when?

[Knit]

[COLOR="Magenta"]Remember when you learned to walk? We all fall, we all get up. No matter how many people we have seen walk...we need to learn how on our own. Now? We are experts but to save others from frustration we rush in w/ the "how-tos". "different shoes. more things to grab on" we really don't want to see others land on their butts. We forget what it was like when it was new.

Remember when you learned to ride a bike? Someone was telling you how? Yet no matter how well you listened you just needed to learn it yourself? Now? We get so frustrated when teaching our littles. Why can't they just get on and ride? It's sooo dang easy. We forget those first wobblely moments while learning.

Remember when you got your driver's license? Everyone gave all their thoughts on it and all you wanted was someone to say "Good Job! Isn't it exciting?" Now? We forget those wonderful moments of achievement and what it meant to us. And dump on the smiles of the new drivers.

Remember when you first touched a computer? How in the heck did they say to do that? "No, wait slow down I didn't see what you did to get there" Please repeat that. Now? When someone asks for our help on the computer we click click click and don't slow down and take it back to a beginner's level. We forget all the notes we took just to send an email.

Newbies to MS need to be given the chance to fall on our butts. To ask dumb questions. To cry, to laugh. to be angry. To hope someone out there understands what it is like to be a newbie. We want answers and advice. Just don't come at us full throttle and try to keep us from "getting hurt" like you did when you first learned you're dx of MS.

I hope I haven't hurt anyone's feelings. This isn't meant to hurt anyone. Just to remind those w/ the expertise to remember what is was like at your beginning.[COLOR]

[SNOOPY]

Newbies to MS need to be given the chance to fall on our butts. To ask dumb questions. To cry, to laugh. to be angry. To hope someone out there understands what it is like to be a newbie. We want answers and advice. Just don't come at us full throttle and try to keep us from "getting hurt" like you did when you first learned you're dx of MS.

I hope I haven't hurt anyone's feelings. This isn't meant to hurt anyone. Just to remind those w/ the expertise to remember what is was like at your beginning.[COLOR]

My feelings don't get hurt, at least not from someone I don't know...like those on message boards.

I'n not really sure what your point is or why you posted this topic

Anyone can voice their concerns and questions. It has been said many times on MSWorld 'no question is dumb.'

There are those of us who have been at MSWorld for quite a long time and we have answered the same questions more times than we can count. We do it because we want to.

If a question is asked, it can be answered by numerous posters all having different experiences and opinions. If someone doesn't want different opinions...don't ask.

Expertise? This is a MS forum that states "Patients helping Patients." We are not experts.

[Knit]

remember

Any one who has gone through any thing and is still standing is an expert. We teach kids in 4-H anyone you talk to, learn from is an expert on that topic and should be on the reference list. So anyone who has been w/ a dx and has a handle is an expert.

I have talked to people w/ MS..a variety of people. 9 out of 10 hit w/ what needs to be done/tried/used this doc, this med etc etc. Only one asked how I was doing. When something happens we all have to go through the "grieving process" whatever it is we see that we will be missing. We just want a chance to learn and ask and talk and cry... and well...It just was a way of someone who is a newbie who is having so much thrown at her that I wanted to help other newbies. One day I'll be the expert and I can share my knowledge...one thing I will remember is that all newbies need a chance to "get a grip".

At least I got people thinking...

[AshNight]

My feelings don't get hurt, at least not from someone I don't know...like those on message boards.

I'n not really sure what your point is or why you posted this topic

Anyone can voice their concerns and questions. It has been said many times on MSWorld 'no question is dumb.'

There are those of us who have been at MSWorld for quite a long time and we have answered the same questions more times than we can count. We do it because we want to.

If a question is asked, it can be answered by numerous posters all having different experiences and opinions. If someone doesn't want different opinions...don't ask.

Expertise? This is a MS forum that states "Patients helping Patients." We are not experts.

Youve never used DMDs? Whats the reason? And how do you think you fared?

[GEM]

Most of us remember just how lost and confused we were when we were newly diagnosed and needed some simple, non-technical answers. Been there done that answers. I'm not sure if you'd call that "full throttle" or not. it's just an attempt to smooth the road a little.

[Tomjadg]

I've never seen anyone get anything other than support and advice here.
Never seen anyone accused of asking a dumb question.
I'm a bit confused about this post.

[Knit]

when

I see that this is a highly felt topic.

Gem: you are the type who "gets it" in my mind. I stated what full throttle was in my post. Someone "listening' but so fired ready to question everything one goes through from symptoms to treatments to "whatever". Didn't we just go through months/yrs of self-doubt in our own bodies brought on by family/friends/docs who think we are "cry babies"?

Tomjadg: support yes and I don't remember saying any thing about dumb questions. If I did that is something I did not mean to say or imply. I have never heard or asked a dumb question.

And speaking of questions..

AshNight, what is DMD?

Again, those who are taking this too close to heart need to see if from a newbie's eyes. This isn't meant to be an attack. Just thoughts of someone who gets more advise than what is wanted at the moment and a chance to have a voice that speaks what others think but are too afraid to say.

Isn't that what a forum is for? Speaking what one feels and having a chance to be heard?

[MrsBones]

My feelings don't get hurt, at least not from someone I don't know...like those on message boards.

I'n not really sure what your point is or why you posted this topic

Anyone can voice their concerns and questions. It has been said many times on MSWorld 'no question is dumb.'

There are those of us who have been at MSWorld for quite a long time and we have answered the same questions more times than we can count. We do it because we want to.

If a question is asked, it can be answered by numerous posters all having different experiences and opinions. If someone doesn't want different opinions...don't ask.

Expertise? This is a MS forum that states "Patients helping Patients." We are not experts.

I have to agree, Snoopy.

Knit-
Every day, sadly, more join us here because they or a loved one have been diagnosed. Some of us have been living with MS many years, but come here to co-miserate, compare notes, etc. It's my experience that the folks here have always been supportive and answered any and all questions to the best of our abilities. We are by no means experts on MS. We can only speak from our experience as Snoopy said.

Snoopy has been diagosed for a long time, I've been dealing with this since I was 13. I'd like to think we both know a decent amount about MS, but how can we be experts when not even doctors and researchers can agree on all that is MS? Having or doing something for years doesn't necessarily make one an expert. Heck, I've been knitting since I was 5 and there's still new techniques to learn. Apples to oranges, but the concept is the same.

It's also my experience that when people don't want an answer, they don't ask the question. When we want to be left alone with our particular issue, we either don't come here or don't mention it. That's the beauty of internet support... we can pick and choose when and how we get it from people who at least understand what it's like to be a PwMS, unlike our real life friends and family.

I'm sorry, Knit, if you feel disappointed in some way by your interactions with the other PwMS you've spoken to.

I have talked to people w/ MS..a variety of people. 9 out of 10 hit w/ what needs to be done/tried/used this doc, this med etc etc. Only one asked how I was doing.

( changed your text to black, as the color you used was virtually invisible to me )

You will see that kind of interaction between many of us. It's not so much one telling the other what or how things need to be done. It's almost like a secret language, we often introduce ourselves with what kind of MS we have, drugs we've taken, etc. Take a look at the signatures of many of the members. You'll see a dx date, drugs/treatments taken, MS type, etc. It's just for many of us, a way to compare notes , no matter how long we've had MS. It's such an individual disease, it's a comfort to know someone out there had that same symptom, that same drug reaction, that someone out there gets it.

It may sound rude, but some of us (I know I've been guilty) may not ask how you're doing unless something big like a relapse or a round of IVSM is happening. Frankly, we know how you're doing....we have MS,too. We get it. We understand how you're feeling.

Telling you what drugs they've taken and doctors they've seen isn't, unless you've asked, them telling or suggesting to you what you should do. It just may an invitation to compare notes. Another way to learn something new.

[GEM]

But you are going to get responses if you post. Don't judge those who see your post as a cry for help.

[akafearless]

DMD

hello from one newbie to another....
DMD=disease modifying drug

[Knit]

Remember

Why is everyone so defensive? It was just meant to have people remember what is was like.

For everyone: I had said "talked to" as in human contact. Actually human contact maybe a phone but there is still the give and take that you can respond based on the delivery - voice and words. Not a single person here has treated me w/ anything but respect and kindness until now.

Forums you read..only read...how someone takes it is from the current state of thought or emotion. Instead of the automatic response of defense - "I/noone does that here" would it have hurt to just say "interesting", "thought-provoking", "you may have a point" or "someone is having a bad experience and needed to share her thoughts" or even "someone is in a bad place- I hope it gets better."

Instead the responses have been not so pleasant. But when ya speak from the heart you have to be prepared to take the swords that are thrown back. In a way some of what has been written is double-edged..."it's nice here but flip one is attacked on their words. Proving what? that yes you must be guarded by what one says as you never know what you'll get back. if you speak from the heart, it could be broken. Maybe that is what is happening at the time of someone's writing. I guess I'll go back under the radar and just read here on the forums. Keeping all thoughts to myself. I'll go share w/ my spinning flock.

[Lendi]

The great thing about forums is that there are those who do understand, been there done that. Those who are so sweet and willing to help if they can. Thank you so very much.

The bad thing is sometimes the thought that's put into the words of a post doesn't come across as it's meant. The printed word is kind of touchy and most times actually meant in a positive way but sometimes aren't taken that way. (I'm not saying anyone was neg., btw just talking in general)

Knit, I caught what you were trying to say. Actually, I posted on another thread that I liked what you said. You seem to be a very deep thinker and willing to share your thoughts.

Baby steps. Life is full of them from the very beginning to the end. That's part of growing and learning. IMHO

[salamandertom]

Knit,

I also understand what you were trying to say. I also enjoy your posts.

[MrsBones]

Why is everyone so defensive? It was just meant to have people remember what is was like.

For everyone: I had said "talked to" as in human contact. Actually human contact maybe a phone but there is still the give and take that you can respond based on the delivery - voice and words. Not a single person here has treated me w/ anything but respect and kindness until now.

Forums you read..only read...how someone takes it is from the current state of thought or emotion. Instead of the automatic response of defense - "I/noone does that here" would it have hurt to just say "interesting", "thought-provoking", "you may have a point" or "someone is having a bad experience and needed to share her thoughts" or even "someone is in a bad place- I hope it gets better."

Instead the responses have been not so pleasant. But when ya speak from the heart you have to be prepared to take the swords that are thrown back. In a way some of what has been written is double-edged..."it's nice here but flip one is attacked on their words. Proving what? that yes you must be guarded by what one says as you never know what you'll get back. if you speak from the heart, it could be broken. Maybe that is what is happening at the time of someone's writing. I guess I'll go back under the radar and just read here on the forums. Keeping all thoughts to myself. I'll go share w/ my spinning flock.

I don't think any one was attacking, just responding to your posts with our honest feelings. Believe me, we remember what it was like to be new. MS is so variable, every day can be like the day you were dx'd. Starting from scratch accepting and dealing with new situations everyday. We never forget it.

Newbies to MS need to be given the chance to fall on our butts. To ask dumb questions. To cry, to laugh. to be angry. To hope someone out there understands what it is like to be a newbie. We want answers and advice. Just don't come at us full throttle and try to keep us from "getting hurt" like you did when you first learned you're dx of MS.

I understood what you were trying to get across in your original post. Really I do. But please try to understand the responses you've received.......

I stated what full throttle was in my post. Someone "listening' but so fired ready to question everything one goes through from symptoms to treatments to "whatever". Didn't we just go through months/yrs of self-doubt in our own bodies brought on by family/friends/docs who think we are "cry babies"?

"Full throttle" as you've described, and this is just my opinion, sounds just like someone answering a question asked. Giving their own opinion when asked for it...something welcomed, encouraged and loved by the members of the board. If that causes self doubt on the part of the person asking the question it is regrettable, but may be unavoidable. As you said yourself," Forums you read..only read...how someone takes it is fromthe current state of thought or emotion." No one means to bully, cause self doubt, be unpleasant, tell you or anyone else what you "should"/"need" to do or question what anyone is doing. Again, " Forums you read..only read...how someone takes it is fromthe current state of thought or emotion."


I do apologize if you found my response to be unpleasant. I was giving my honest opinion, based on my experiences on this board and in real life, of MS and PwMS. That is what I and I'd wager the others responding try to do.

Happy spinning from one Knitter to another.

[Knit]

thank you

Lendi - Thank you!

salamandertom: Thank you too.

I belong to the Facebook page "My dog is neutered, I have enough balls for both of us"...(if you saw my Boxer he's scary w/ a blind eye, crooked jaw and black face he doesn't need a pair lol(sorry the vergage). He's the biggest lap dog around). I am finding I'm getting better at speaking from the heart. I dare to say what others wish they could. How can I be a warrior in this MS battle and help others if I can't say what I'm feeling. Otherwise I'm just a parrot and dang it...that's way boring.

After 20+ yrs being misdx and getting an actual dx that's the reason for all the "weird" things that happen. I find I can't rage, cry or seek solitude. I learned to keep things to myself and not burden others from my Mom...writing is my venue. I took a chance and wrote totally from the heart.

Lendi and salamandertom you made me tear up a little... you helped crack the shell a little and I thank you!

Knit