I want your thoughts

I was away from the forum this summer while all the building was going on.  A couple things happened.  One is that I got completely away from thinking about MS for most of my waking day.  It is hard to dive back in and be what I used to be.  I think in many ways the getting away was good.

But, this forum grew up while I was gone.  When I go to read the posts I find that some many of you really have jumped in and have given the member great information and great answers.  My answers feel redundant.  It is wonderful to see that none of you need propping up by me.  I feel like the mama whose child no longer "needs" her.  But, I feel a little lost.

So, should I devote more time to getting more HPs written?  I desperately want to do one on optic neuritis and one on trigeminal neuralgia and one on the cranial nerves in general.

Do you want me to wander around and make comments like I always did?  --cause so much of what I would say now is redundant to the great info already being given from our veterans.

I'll always post my indignation, greet and analyze the newcomers and answer requests.  And you know there will always be a superfluity smart-a$$ remarks.  Should I only answer where the info is needed?  I hope this doesn't come across as self-centered, but I am really floundering here.

Quix

[Qwyietman]

I've read some of the health pages you've written and they are great stuff!  Whatever you do will be greatly appreciated I'm sure.

[Charley123]

Please flounder no more.  We've been waiting for your return.  You are a wealth of knowledge so just be yourself.  hugs..Charley

[Tammy826]

Hello & nice to see you back!! I missed you! I feel like you should do what brings you the most pleasure. Follow your heart!! Of course we love you here & I value your advice & your support but woud not want that to keep you from doing what makes you happy. I understand what you mean about needing a break from the MS. Sometimes even seeing others sx can make you think about your own more & therefore make your own sx more noticeable.I would love to see anything you write about ON or TN as I'm experiencing both at the present time. I do want you to wander aroound here though & your answers & advice are in no way redundant!! Your children still need you!! However this "child" (lol) wants you do  what brings you joy & best helps you cope with this awful disease! Please know I love you & have missed you! Me & all our other wonderful folks here at the forum are here for you also ( you need support also!!). Best wishes!!
                        Love . Tammy

[goofysmom1]

Please wander around & comment as you used to!  You are a wealth of information, wisdom, humor (I love the smart a$$ comments), and support for us here.

Although we have gotten by with everyone pitching in and giving where they felt they could while you were away, you are still needed!  You are Mama Quix and your "kids" will always need your guidance.

Your HP's are excellent, so if that is where you want to devote your time - go for it!

But seriously, like Tammy said, follow your heart and do what makes you happy.  We will be thrilled with whatever you decide and whatever is best for you, especially if that means that we get to see you around here.

Oh, and no pressure from me....   :)

Big Welcome back hugs!

Chrisy
(selfishly hoping that you will decide to return in full force!!)

[rendean]

I think Chrisy summed it up beautifully but please do whatever is best for you!

Just happy to see you back,

Ren

[Karen99]

Hi Quix.  I'd like to weigh in.  We need you desperately here, sometimes.  Other times, not as badly.   For instance, when you responded to the recent Tysabri thread, you responded with knowledge and in a manner which no one else here can.  (no offense to anyone else)  You laid the options out, clearly and concisely in a compassionate yet factual manner.  

The Health Pages work for the "greater good" and anyone who has MS, or is in the wait and-see-mode, or stuck in perpetual limbo land should read the health pages. There is a wealth of information there and I have referred many to read them. (within and outside of this forum)  

Your absence has left us with a huge void.  We have managed,  but the tougher issues, or the issues that confounds us - well,  we could use a life-preserver at times.

So I would like to see the Health Pages written on the topics you are itching to write. (and is needed)   We can always send out an SOS when we lose our way or struggling with a tough topic.  

Do what you want to do and write those Health Pages and comment on the forum as you please.  We all have our limitations with time and energy.  You certainly have gone above and beyond here for a very long time.  After reading your post I believe, for now, that the change would be good for you.  I appreciate your academic mind and since ON, TN & cranial nerves questions repeatedly come in, it is nearly impossible to explain them fully each time the question is asked.  WE NEED THOSE HEALTH PAGES.

And we need you too, to do exactly as you described in your post.

Karen



    

[Lulu54]

Simply put, I  need you back here because as you have seen, this place is hopping.  

You have too many years of training and talent to not be practicing medicine somewhere - it might as well be here!  Its great to have our own doctor on call, 24/7.  :-)

as always,
L

[Deb61]

I agree with the others.  You must do whatever is best for you.  Don't feel like you have to add on to what others have already have stated.  However, it's good to hear you smart a** remarks!  I really get a kick out of your humor!  You have me laughing to the point of tears sometimes!  I do hope you pop in and do that like you've been doing.

Optic neuritis has been a big problem for me, and would like to hear more about it.  Everything I know about it I've learned here on this forum or from experience.  I still have lots of unanswered questions, so, yes, please do make some HP's on ON.  Plus, I think I'm experiencing problems with trigeminal neuralgia (not sure) something that I know almost next to nothing about.  If it wasn't for this forum, I wouldn't know anything.  

Deb

[supermum_ms]

When i first started looking for information, simply just trying to understand one of my sx, your health pages kept popping up, they have been invaluable to me, calming with your simple to understand, no nonsense, factual, often humorous and personally mixed approach. Always a great read!

Without trying to be creepy [lol], your what brought me here, it just seemed to be too  coincidental that when ever i tried to get info on something that was happening to me, you had something to say about it. I have an inquizitive mind and you often pointed me in the dirrection i needed to get to understand and accept. You made this journey easier, fear isnt something i relate too usually but this years episode scared the ber-gee-bers out of me, your words took the fear factor out of the equation, i cant tell you how, just that you did.

If you decided to write more health pages because thats something you enjoy doing then i am sure they would be well received, informative and just as helpful to everyone as all your other health pages. Do what ever makes you feel good, whats right for you, i'm sure what ever you decide, there will be many here cheering you on and supportive of your choice!

Cheers......JJ  

[PastorDan]

Mama Q, this place hasn't been the same without you.  I will agree that there are many fine folks here who step up and give great advice, but you wanna know something?  Half the advice given here is something that someone learned from you!  Some of your baby chicks have learned to fly (at least in short hops); you should be very proud.

No, don't push yourself into an overload; too many depend on you online and off to risk draining yourself completely.  I believe that most of us, most days, respect the fact that you're a patient too, with plenty of symptoms to place speed bumps on your pathways just like ours.

Good to have you back with us.  Good to know you're taking care of yourself, too.

[Guitar_grrrl]

Oh, Quix, please, please hang out with us!  Not only are you smart and funny, you're wickedly articulate and so right on!

I would LOVE a page on Trigeminal Neuralgia, for purely selfish reasons, of course.  It's something I go through often, though relatively mildly compared to some of the horror stories I've read around here...

Peace,
Guitar_grrrl

[LLWB]

As one of your mimic-suffering "chix" I couldn't do without you! You helped me so much when I was going thru all the testing. It's so helpful to still be able to pick your brain when I have questions. This place wasn't the same without you this past summer, I'm so glad to see you back. Along with the HP, have you ever considered a book? Such as MS for Dummies? Hope you are resting up. Have you posted pictures yet?

Maggie

[HVAC]

You have been missed. We are glad to have your input. You have a unique perspective with your medical knowledge and experience with the monster.

Alex

[Sailorsong]

I would say definitly come back and post as you use to do. There have been many post (both that I have wrtten and that others have written) that I wish you had made comments on.

Dennis

PS so far you are winning on the "what will go worng" post of mine. It sure was great to read your comments first thing this morning. :)

[LATW]

I'd like to hear more about ON and TN since those are the two things that seemed to have started me down this road!

LA

[biowham]

Health pages! Health pages! As someone said, we can send out an SOS. I'm curious to see a health page about evoked potentials, now that I've actually be scheduled for them.

That said, there have been several occasions in your absence when I felt your medical expertise was very much needed for certain questions posted. But...it's not like you'll be in the "Health Pages" cubicle, unavailable to all outside contact. You'll see where the struggles are and address them, I'm sure.

Either way, everyone is desperately pleased to have you back, me included.

Bio

[shermay]

Right.  No messing or fooling around, we need you here.  you responded to my desparate plea for help regarding Tysabri - I was delighted that you responded!!!

You must do what you feel is right, for yourself and the forum, do we need you??  YES we do.  But other on hand we can't be selfish and ask you to come back to the forum in full force as you used to be - if you don't want to.

It's your choice J, but to have you around would be so beneficial to so many people here.

Your reply to me about Tyabri was not in anyway considered redundant.

We need all the flowers that we can:)

Debs xx

[Fluffysmom]

Quix,

You are needed and wanted on the forum!

Hmm, how do I say this?  I like my PCP a lot; I even brought her a small assortment of single-origin chocolates from my recent trip to Vegas.  I appreciate her knowledge, willingness to listen, and dedication to follow through.  She also takes care of herself, doesn't overload her work-week, shares time with another doctor.

But you?  You're like that, plus a favorite sister or aunt with a wicked sense of humor, with a vast understanding of many subjects, and an ability to communicate clearly and calmly, even in some of the most difficult situations that have come up here.

I came here in a muddle, and reading your answers to others, your Health Pages, and your answers to me helped me to learn and grow and gain strength.  Still, as much as we have found ways to answer each other's questions (with a lot of YOUR information), I feel much lighter when I see that you've posted.

That's probably as clear as mud. but I just wanted to say that we want and need you around here.

We definitely need those Health Pages, so work on those and then pop in when you can/are really needed/just want to hang out.

Heck, your Health Pages could be the basis for a book, should you come into a vast supply of Provigil and great desire to become published more that just on MedHelp.  Um, recently published; with your knowledge and background, I wouldn't be surprised if you've been published already.

I could use help in paring down my Timeline, appreciate comments on my complaint against bad neuro and radiology reports,  your ideas about my neck/chest pain/trouble swallowing issues, and so on.  None of them is important enough to take you away from more urgent issues or your health.

Take time away when you want or need, but never forget how much we appreciate you and care about you, OK?

Hugs,

Kathy

[Eyesnlegs]

I also would like to know more about TN and ON but you have given so much of your wealth of experience, knowledge and compassion to this forum that I believe you have every right to do whatever you want to.

I, for one, believe that whatever you choose to do it will be the right choice for us and you.

Glad to see you back.

(((Hugs)))
Pat

[Deb61]

I know I've said this before, but a couple of people have mentioned publishing a book.  Nothing would give more pleasure than to see you successful with this.  Plus, you would help many people.  

There's not many people (actually I can't think of anyone) that is an M.D. with MS and writes about it.  A book would written by you would be invaluable.  I have yet to purchase a book about MS that I refer back to again and again like I have other medical books.  But I bet you could write one.  Even if you wrote a story about your life, it would be good.  You are a talented lady with a sharp sense of humor and a way with words.

[rendean]

Deb61 has made a very good suggestion.  You would make a great author given your knowledge, language skills and wicked sick of humor that we all enjoy!

Of course,that would take you away from us but as others have said, you have given us so much of yourself already. Just do what feels right to you.

Ren

[cyndi25]

Hi...
I think the census here would be for you to  put your input in when and where needed.
I knew nothing when I came on the search for some answers to questions that I
had , some I had posted(with great replys)  and some that I had and just took the time to
search and read in the health pages and by reading past post.  I still dont know
much, but I am less afraid if my dx should come back positive.. I thank you and everyone
here for making this a much easier journey for me.. Please keep filling me with your
knowledge.. God knows I need it.
My Best
Cyndi

[Sarahsmom46]

I will second and third what most have said in that you should do what you feel will benefit the forum the most.  We know you are out there and where to find you if we need to PM you on a specific issue.  So, do the HPs and keep welcoming the newbies and just being our "mama bear".  

Love and hugs,

Julie

[saveone]

OK here is my two cents.

You have not been back any time at all and already  I am restraining myself from asking you to elaborate on something you said....i.e. hyper reflexes are indicative of a spinal lesion.

I am sure many more are restraining themselves to keep from asking their questions so as not to over whelm you.


So by example you see how important I think you and your knowledge are to this forum.  Those of us who have been around a while know that.  The newer members will come to know that..if you give them a chance.

Remember, for them you are untapped knowledge baby!

So jump back in and be yourself.

Love and hugs, terry

[deborah0904]

Quix,
I'm sorry, I haven't taken the time to read everyone's response to your question.  I for one always look to see what you have to say, however: I have to say that I would like to see you do what you want and what you feel is best for you!  I don't think anyone should tell you what to do.  We always love to see what you have to say and we appreciate your vast knowledge.  I think this is a decision you will have to decide.  I of course say that with a great deal of respect for everyone and sure don't mean to hurt anyone's feelings.  Like I say, I haven't read all the responses.  I know you will do what is best for you.

[poorkid]

I have often wondered if I was given MS to serve a purpose somehow.  I want to feel that it was all for something.  I want to believe I have value, even with the little insight I may have to offer. Quix, you have so much to offer to us.  I don't even think you realize how much we have missed you.

You have to decide what's best for you.  

[milwrite]

Thank you for helping so many of us and sharing your knowledge and experiences. Whatever you choose, health pages or posts, as a newbie, I can't wait to read more....and I would looove to buy that book!

Thanks again,

milwrite

[Ufrustrated2]

You'll do what is right for you and us. The survivor instinct will come into play.

LuLu said it well ... When time & health permit jump in and practice medicine here ...

I don't see any neuro's jumping in helping this MS community out, do you!? ;-)

[Heather3418]

I suppose I am a little biased in my answer to your post.  Because of your medical expertise, I remember the day you literally saved my life, on this very Forum.  I think you remember, because I sure do.

It's not every Forum that not only has a friend suffering from the same thing we do, but with highly intelligent medical savy that can literally save lives.

I am not trying to pressure you, Quizzle.  You and I started out as Community Leaders on this Forum.  In fact I wouldn't even be on the Forum had it not been for you.

Even though I passed my "purple flower" onto someone else, that had more time and more energy than I did, I think the rest of the CO-CL's could use your help; just as I did.  This Forum needs a medical professional to sort out alot of misunderstandings about the ins and outs of the human body.  That makes this Forum unique, I believe.

In case you haven't guessed, the Forum has missed you.  Everyone needs time away from the Forum, and when you need it, all you have to do is say so, just like the rest of us do.  But please remember the "Mob Rules," you set up a long time ago.  Nobody wants to be placed in one of your body stockings to be kept here, especially since they are knitted with a place for three boobies.  Nothing personal Pastor Dan.  I can only imagine what she would knit for the men, to keep them here...

We love you Momma Bear....

Heather

[essdipity]

Q, you know you have days where answering posts feels just right, particularly when neuros are being dense and our members are being hurt by them. Then you mount a mini-crusade and give us knowlege and power to help ourselves. I'm also thinking of the unknown hordes of people who never post but still get help here, largely through you. So if you do nothing but that, it's all to the good.

But there's another side to your analytical nature, a side that likes to give a more comprehensive description of what goes on in MS-wracked bodies, and what thus far can be done about it.. Then you sit, quill pen in hand, and give us medically accurate but understandable information that we can 'chew on' and see whether it applies to us as individuals. Over and over it does.

So I suggest that on days you have time and energy for the forum, you decide which mood you're in and just go that way. It's all good.  There's no deadline, after all, and we learn either way. The comic relief is a bonus!

ess

[michelleric]

(((QUIX))),

I have been away for a few days from the forum, and got here to read your post.

From a very selfish point of view, you must be here at all times! for everything. I have missed you tons, and was SO happy to see your name again posting. You saved my life, literally, and I will always be grateful and indebted to you. You are such a huge source of inspiration to me and I would feel sad if others did not benefit from all your knowledge and compassion you have. You are a most wonderful woman and we are SO lucky to have you here.

On a not so selfish note, you must do what is best for you.  Whether that means working on the health pages, or "only" being here occasionally, you must do what is best for you.  Yes, the other "purple flowers" are WONDERFUL, but you are the bouquet they arise from. (That is way to mushy gushy for me, isn't it?!)

Anyway, I know you will do whatever is in your heart, but please know you have helped so many here, and really my family and I are so much better because of your knowledge and help.

With tons of love, respect and admiration to you,

Michelle

[kmil1999]

I can only echo so many of the others.  You are so needed!! but more than that you are also wanted.

Your education adds the unique dimension that no one else has.  That coupled with your humor, makes you sorely missed when you are not able to be here.  

This forum is the best I've found on the internet, (MS or other diseases combined). I doubt it would have been that way without you.

Please know how much we care about you, and value your opinion and expertise.

Do what you need to do with our blessings, and know we will be excited when we do get to hear from you.
My best,
Karen

[ShadowsSister]

WELL there's your answer for the Group, but now I'll give you my input for what ever it is worth.
Every Time I am on the forum, I check for any posting from you, This is the Truth. Everyone who knows me at all, knows I don't LIE or whitewash my feelings. You will always be needed. It is not fair for you to punish us for trying to keep things going while you needed some time off, by not sharing ALL OF YOUR WISDOM & WIT with us... You silly woman, OF COURSE WE NEED YOU, we were just giving you space & time to deal with everything you have been going through. Besides can't you tell we aren't Grown Up Yet, we Need our Mama  Q...
So I for one really don't want to even have to deal with losing our Fearless Leader, not at this time, NOT EVER..
Has my message been Received and understood...Jean( Momma Bear) please don't let us have any more of this silly talk... PLEASE
Sending you healing and loving hugs on the winds, so when ever you feel a breeze blow by say to yourself, " DJ just gave me a special Hugs"... it's true I did..
Love, Hugs and Prayers {{{{{{{~!~}}}}}}} DJ

[sllowe]

Yes...yes.... and yes.

We definitely need HPs, we surely need you wandering about and commenting and keeping us square too.  

Uh, I'll have all of the above please :)  (boy am I greedy or what?!)

Seriously, do what you can Doc - I'm grateful no matter what!

-shell

[Quixotic1]

Oh my!  First, I didn't mean to even imply that one of my choices was not to be here.  As I have said many, many times that I get more from you than any of you could ever get from me.  I was just having trouble getting back in the saddle and then seeing that there were so many great answers being given that I used to do.

DJ I would never threaten to leave, I was just trying to figure out my new place.  Turns out it was the same, old place.

One, I will still be here with you, but I am going to try to get some HPs done also.  I see that it is important for me to wander around and post randomly as I always did, so I will continue to do that, but maybe not so many per day so there is still energy to write up some articles.

And thank you all for the wonderful warms and fuzzies - it was not my intent to elicit those, but they feel great nonetheless.  "Belonging" is such a deep and soul-nurturing.  It gives me great comfort to know that I am part of something so much bigger than myself...we all do.  Poorkid is right about that.

Terry, there is a Health Page called Spinal Lesions.  It talks about hyperactive reflexes being one of the strongest signs of spinal involvement because of the way the tendon reflex happens.  Also, I think the HP on Measuring the Tendon Reflexes describes it, too.

All of you, you are members of my family just as if we sat to dinner together.  My family knows you and I tell them of all your frustrations, pain, and stories.  I get the message and I thank you all for it.  I'll do the same things I always did, and I'll also work on getting the info out there to learn from.  Thank you all for being here for me.  It helps keep me going some days.

I'm coming up on a couple weeks when I'll be here a little less.  My sister, caretaker of me and my parents, is flying to SoCal to see her first grandbaby, a boy, Koa Allen.  That makes me a first-time geat aunt. and I have another little one to spoil.  Our family is very small, so each new addition is a marvel.  My niece wasn't supposed to be fertile.  She had lost one ovary to endometriosis and cysts and the other fallopian tube is flapping loose in the breeze.  The other niece doesn't want children.  So Ann didn't expect to see a grandchild short of an adoption.

The move has gone beautifully and my parents are settling into something of a routine.  My dad's mental status is hanging in there and my mom is doing better than expected.  My room is great and people are hearing about my mosiac's bathroom and coming over to see it from word of mouth.  We'll try to get pictures soon.

Okay all, back to the work at hand!  Love you all!

Mama Quix

[shawnie31]

I will make this short. I just finished reading everyone's comment. I'm overwhelmed how this forum is. We are so fortunate for everyone here that has been helping each one of us get through some tough times.

The flower ladies have really been keeping things on the up and up and I'm sure by everything that was posted above you can tell how your presence is so required here.

Happy to hear about your a great Auntie! Babies are truly wonderful gifts. I was in a similar situation with my endometriosis, so happy we were able to have one child.

Take care
Shelley

[PastorDan]

AntiQue?

Sorry; couldn't help myself.

[Erin0313]

Quix,


Welcome back :) You must be exhausted.

I would love to read book on MS and the ups and downs that you know so much about. If you had one published I would buy it the day it came out - I would even pay the bucks for the hardcover instead of waiting for the paperback, lol. Maybe you could insist on large print for those of us with chronic/ constant ON, ha ha.

All of your posting whether it's answers to us or health pages are a huge help and appreciated. Glad to have you back but spend your time doing whichever makes you happiest.

P.S. Lulu you are fantastic and have done great !!!!!

Hugs,
Erin :)

[steph74]

As if you haven't had enough people saying this already, I'd love it if you were back and more active on the forum, answering questions and writing health pages.  I, like many others here, have done a lot of research on my own and can answer some questions, but it's not the same as someone who has the years of training and can say, "Oh, did you think about this connection or possibility, because the body works in this way..."

So anyway, do what's right for you, but it'd be great to have you back on a more regular basis, now that the construction is wrapping up.

Stephanie

[Janette2836]

Quix,
It is great to have you back!  Don't over do it.  We are just glad that you are able to play with us here  :)  Enjoy spoiling that new baby.  Wish I was closer so I could peek at that Mosaic shower = I am sure it is beautiful!

Take care of you!  
Janette

[ShadowsSister]

Mama Quix,
Sweetie you just made my day sunnier when I read your response. I am so happy we misread what you were saying.  You were one of the first to respond when I joined our group after Lulu led me over to MedHelp.
I knew right away that this was the support group I was met to be a part of. You were also right when you said we were family. Truer words have not been spoken,

I am so glad you plan on sticking around, and you realize how much we all need you and You need us too.. We are all here for you...

Have a beautiful day know in your heart that you are loved and cared about so much,,,
{{{{~!~}}}} DJ

[Wobbly]

All I would like to add is that it's not the same without you here, but knowing you are still here, with the Health Pages and still lurking, and answering questions or concerns is fine with me... But I do look for any answers you might add to a post..

I know everyone here has done a great job at getting infor and chatting with people and new friends... and this forum has grown so much I don't know how it can be kept up.. I only come on when I can and boy does it just grow.

Please do what you need to do...but stay close by..
and add some comments... just to stay in touch..

take care
wobbly
dx ppms

[Mand125]

Quix
Your health pages have been invaluable in recent months when I was helping a dear friend who is in limbo to find out all she could about this disease, MRIs, lumbar punctures etc etc.

Having said that I can't imagine this forum without your advice, yes we get wonderful advice from other members (and "flowers") but I think we all probably looked on your absence as temporary.

Mand

[Weakandfalling]

To my Quixotic Mama!!  

So glad to hear from Mama Quix - that things are going so well for you!!

I'm gonna be selfish here - PLEEZE continue writing your HP's.  Those pages are so informative, soooooo helpful!!!  We need them - more of them!!  I have just drunk in all your writings on MRIs etc.  Nowhere else can we find such straight-shooting facts to help us navigate the slippery shoals of the MS diagnostic quest!!  Your HP's leave me feeling positively giddy with information!!  Please don't stop until you've shared every last drop of your own experience and knowledge with us!!

And I really look forward to reading your thoughts on optic neuritis since that is what I seem to be experiencing lately!  My 3T brain MRI did reveal optic nerve involvement and lately my eyes feel like they're either surrounded by cotton or I've gone through a sandstorm.  Blurry vision comes and goes. Also, my vision feels like it is fading: I could see a statue of a person across a large room, but no facial features on it.

So, I vote for more HPs - and especially one on optic symptoms!  Also, it's nice to know you'll also still be available on the site.  Just picture all the arms and hands poking through the gates of Limboland, stretched out to you, reaching for the key to a diagnosis!!   We thank God for you!!

WAF

[PastorDan]

I propose that we all nominate Dr. Q for next year's Nobel Prize.

[ShadowsSister]

I will second that nomination. ;-)
Have a safe, restful and relaxing weekend all of you. My thoughts and Prayers are with each one of you
{{{{~!~}}}}} to all of you...