What is wrong here?: This forum was once a... - My MSAA Community

My MSAA Community

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What is wrong here?

Amore55
Amore55

This forum was once a fun, educational, lively place to visit. Now it has been taken over by ONE person who is posting 3-5posts during a 24 hour period. The old family members have dropped away. I have discussed it with other “old timers”. We feel as though we are at our wits end. As one good person said to me, “we are doomed”.

Let’s at least attempt to regain what we have had over the years. Perhaps limiting one’s posts to 2 per day would be an idea. Just a thought. Some of us feel rather desperate.

Kelly

62 Replies

I don't see all the post but have been wondering what has happened to so many that have responded to my posts on the past. I miss them

rjoneslaw
rjoneslaw in reply to Turtlepie

I have to admit I was one of those people who dropped off for a minute because I was taking a free It computer class from Sept2020- Dec 2020.

Then I didn't know if I wanted to post because only 3 people reached out to me to see how I was doing and I felt like I would always she how people would post asking where is this person but no one did when I dropped off. I was always posting things and I would even joke will several people, so I figured I wasn't missed so there was no need for me to post or respond .

But good old jimeka talked me back so here I am

Turtlepie
Turtlepie in reply to rjoneslaw

I am sorry that I didn't reach out. I don't always look at this sight unless I am posting something or I get notification that someone I am following posted something. Sham on me.

rjoneslaw
rjoneslaw in reply to Turtlepie

Ur good thats how I was feeling at the time.

I just keep seeing post after post saying where is .. ? we miss u

at the point I was done but after jimeka and Sandydemop encouraged me I came back

Tulip77
Tulip77 in reply to rjoneslaw

I’m glad you are back. The app keeps logging me out and I haven’t been as active on the site. I really hope people stay. This is the only site/group that feels like a truly safe place. Other forums... not so much.

rjoneslaw
rjoneslaw in reply to Tulip77

This is my safe place as well

Plus it the only one I’m on.

mm1527mm
mm1527mm in reply to rjoneslaw

Glad your back rjoneslaw as you know you helped me. I get very busy with the kids and work and when I log on I only see some of the very recent posts. No idea what occurred that some are posting about but I hope everyone can continue bringing positivityand encouragement to others during this difficult diagnosis and journey

rjoneslaw
rjoneslaw in reply to mm1527mm

thanks

carolek572
carolek572CommunityAmbassador in reply to rjoneslaw

I love hearing from you, rjoneslaw :-D

rjoneslaw
rjoneslaw in reply to carolek572

And I u

Things CHANGE create our own ms forum

Hello Kelly, how you’re doing? I’ve been wondering the same thing. I’ve been here for over 5 years and the things and people that attracted me to this forum has steadily gone away. I’ve noticed less and less of the regulars are posting or voicing their opinion and thoughts. I know I haven’t posted like I used to and I wish I knew what to do. Hopefully things will improve and some of the old gang come back.

Amore55
Amore55 in reply to Royjr

Thank you for understanding the way it has felt to me. Perhaps some family members will start posting again, looking for the support system we have always had. You and I joined about the same time!

I am done. I deleted 5 years worth of posts last night.

Mermaidia11
Mermaidia11 in reply to kdali

And yummy mummy kdali

honeybunch why are you throwing in the towel ?

Ah chick you have no idea how made up and impressed I was when you got pregnant, had a beautiful baby and shared her with us.

Omg you went into Wonder Woman territory, so impressed was I at your undertaking and stellar achievement

I’m sure all your HU family will join me in beseeching you not to go

Please?

kdali
kdali in reply to Mermaidia11

🥰🙏 I really appreciate everything you wrote here!! I’m not going anywhere! I’m just not sharing any more posts/starting new threads. I don’t have time to fight with people or to defend what I share.

ahrogers
ahrogers in reply to kdali

Oh no, I always appreciate what you share because I know you research it before posting!

What I do is only click on the links to posts from those here I like to read posts from and ignore the ones from members whose posts I have read in the past and didn't care for. They may have some followers who like their posts so I don't want to say they have no business here.

I don't get to every email listing new posts so don't get to read all the posts from people I enjoy but at least get to some days 😁

Please keep posting for those of us who support you and value your input and just ignore replies that don't.

❤❤

kdali
kdali in reply to ahrogers

Thank you 🙏

Juleigh21
Juleigh21 in reply to kdali

I have so much respect for you and I value your post!

kdali
kdali in reply to Juleigh21

Thank you! 🙏

mm1527mm
mm1527mm in reply to kdali

Love your posts! And love that you shared your experience during pregnancy gave me hope!!

Amore55
Amore55 in reply to kdali

I recognize that you will make a decision you feel is right for you. But if it is one person driving you from us, please do not leave. I love you and always will. Please pm me. Love, Kelly xxx

kdali
kdali in reply to Amore55

I love you too Kelly, always! 🥰

kwhompus
kwhompus in reply to kdali

Please don't go where we can't find you. I can feel from a million internet miles away what a kind person you are and we could use some of that. 😬😬

kdali
kdali in reply to kwhompus

Thank you! 🙏

Midgey_Midge06
Midgey_Midge06 in reply to kdali

Oh sweetie! Please dont go. We love you! What happened? I dont understand

kdali
kdali in reply to Midgey_Midge06

I’m not leaving the group, I love you guys too much 🥰 I’ll be around in the comments 🎉 and coffee chats, if I can ever remember to join one 🤦‍♀️

Midgey_Midge06
Midgey_Midge06 in reply to kdali

I forget those all the time too! Glad you are sticking around. I wud be heartbroken if u did. 😘😘💜💜

kdali
kdali in reply to Midgey_Midge06

I even put them in my calendar!! 🤦‍♀️🤦‍♀️

No, this is my group too, you’re stuck with me.

Midgey_Midge06
Midgey_Midge06 in reply to kdali

I like that!! Glad to have u stuck with all of us!

Tulip77
Tulip77 in reply to kdali

Oh nooo! I appreciate your posts so much!

kdali
kdali in reply to Tulip77

🥰🙏

CalfeeChick
CalfeeChickCommunityAmbassador in reply to kdali

I would hate to see you leave kdali You have always brought so much cheer to our forum. Please stay🙂🙏

kdali
kdali in reply to CalfeeChick

Ty! 🥰🙏 I’m not leaving the forum, but I’ll be lurking in the comments 😉

Ah mate ! Our Kel, our Amore55 amigo

How are you doing?

And how and where is everyone else?

I’ve been quiet because I’ve entirely lost my balance and have had a few nasty falls of late; I’m managing, but only just

Adapting is a full time job ffs

There have a lot of tears and tantrums of late!

But Hearin ya sista, will get my big girls pants on and get me brain in gear and think of somethin illuminating and funny to ponder, as we all should ?

My latest is - If I was a unicorn, I’d be sent off to the glue factory

Love light and delight to our Kel and all the ledges here

✨💕💜🦄💜💕✨

Amore55
Amore55 in reply to Mermaidia11

If I were a unicorn, I would be joining you! No one would want a unicorn with MS!

Love you sister and just hate to hear of your falls and troubles! Wish we were neighbors and could have a good chat everyday.

Sending you gentle hugs and much, much love, Kelly xxx

kwhompus
kwhompus in reply to Amore55

A unicorn that's not perfect is still a wonderful thing. I bet the people who know you wouldn't say otherwise. After all if this was a perfect world wouldn't we be in heaven.😇

Amore55
Amore55 in reply to kwhompus

Thank you! What a kind thing to say! It would be boring if we were all perfect ☺️😆😍love, Kelly xx

yep me too lucky I have a real good helper a German shepard resuce i got from a gsd rescue it turned out to be a mutal resuce she has helped me get up many times this winter got a sot of ocevus a few weeks ago seems to help with balance but before i got 3rd time man i was in bad shape i feel your pain hang in there we cant change the weather either

Amore55
Amore55 in reply to timothy228

timothy228 I have had so many wonderful dogs over many years. Glad you have a great German Shepard.

They are so beautiful and smart!

I haven't been hear that long ,but I agree with what your saying. Its like someone needs or thinks they are the voice of all authority and knowledge. Perhaps its the wizard of Oz having had to find a new home.

Amore55
Amore55 in reply to kwhompus

Amen!

I posted about the glow in the dark shark, i dont much these days. Its hard to find good things to say. I wait to post negative stuff till im about to implode. So in the limbo zone i get quiet. Hoping for something better tomorrow is getting old, but i still try. Its not that anything is necessarily worse its the length of time in which ive been stick in this space that has finally gotten to me. I sleep way more than anyone has a need to. When im awake im playing sone stupid game or listining to music or trying to accomplish something to create something positive. Its begining to feel alot like a fools errand as far as for me. I will try but its farther and farther between somehing decent in me.

I totally understand your pain. I have an on line therapist and she gives me “homework” so i have things to work on each week. Makes me feel good. She specializes in neuro disorders. I love her.

How much sleep to u get? I get about 12 hours just to be able to function like a human. Along with my nuvigil.

Also i loved the glow in the dark shark. It was awesome.

I'm asleep far more than im awake. There are days where all I do is get up for the restroom a drink and a little something to nible on. Its no longer an uncommon occurrence for me to sleep the 16hours I should be awake and am awake the 8 or less hours I should be sleeping. I'm already completely exhausted. I did get up at about 8am, thought maybe I was going to get back to normal but I'm so sleepy.

You were on provigil for awhile i thought?

Yeah i dont take it everyday or it becomes ineffective. Now i only take it when there is something oreasing i have to do like a drs qppointment etc...

Ah gotcha. I take mine every day or i wud be a slug. I take a day off here and there but if i let myself stay that tired i wud never hear the end of it from my dog.

She wont even let my hubby let her out to potty in the morning. It has to be me. So i keep the nuvigil on my nightstand to take so i can roll outta bed

Im hard on meds and meds are hard on me. My system and i dont do well with a majority. I think i took them every day for a few months and then it qas like i might as well have been eating skittles so 9 had to go without for 6months and now i can take them occasionally. However, i took one yesterday morning and it didnt do a thing😥 so i guess its going ro have to ne another conversation with my doc.

Ya provigil did nothing for me. Zip zilch nada squat. Nuvigil was a huge difference. Now part of the day my eyes will actually open all the way and i dont look like someone just stepped on my puppy.

I also do vitamin b12 shots. Helps make me happy (along with prozac) and gives me a kick i need on certain days.

I've mulled this over before responding. I agree that the forum is not the same as when I joined five or so years ago. I have never been a frequent poster because I often have nothing to contribute: my version of this snowflake disease is characterized by very short flares that never meet the criteria for relapse; because of my age at diagnosis, I have never been prescribed a DMT, and though I am slowly losing physical abilities I once took for granted, this may be a function of age rather than MS. So, in my case, there's that. I do consider the forum as a family and feel welcome and understood here as in no other place in my life. And thanks to those who post more often than I, I have a much better understanding of MS than when I joined.

But it also occurs to me, that perhaps a forum like this is going to be like a spring fed pool: new water enters from the source, while water that has been pooled for a while, flows downstream or is pulled by gravity into the damp soil, eventually recharging the aquifer.

Another way of saying this is that new folks constantly arrive here in search of support or answers, some stay, some have busy personal lives that consume time which might otherwise be spend here, and some leave when their needs are met. In either case, pool or forum, change is ever present - some gradual, some dramatic - that keeps both fresh and fends off stagnation.

I have made several good virtual friends here. They are part of a circle where I feel accepted and at ease, so though I may not post often, I intend to stay here, watching and listening, helping when I can, only occasionally adding my voice.

Amore55
Amore55 in reply to goatgal

We need to recognize that change is ineluctable. Very good response and analogy.

adios,amigos,so sorry someone has driven you crazy to the point where you felt it was necessary to discuss it with the "old timers",it sounds like you were unsure of yourself that you had to get opinions that agree with yours. i think there is not one person on here that would offend anyone purposely. what is wrong with purposely addressing that person directly publicly or privately,your choice.I have really enjoyed picking peoples minds for thoughts and humor,if i don't care for a person's thoughts i just don't read them,the last time i checked we do have free speech in this country, I guess i will be one of the "old timers" that will sit on the sidelines.if I leave that is my choice and no one elses.I have loved and appreciated you all:)

Amore55
Amore55 in reply to pamgarner

Much love to you, Pam.

pamgarner
pamgarner in reply to Amore55

:) thank you

I joined this forum about 3 years ago. I don’t post much, but read every day. Right after my prayers, and I pray for everyone here, I reach for my phone to see how everyone is doing. Kdali please don’t leave. We all have so enjoyed your adventures with the girls (especially Disney) and how you research everything. This disease sucks and no matter how loving a support system you have, it is not like your family here who really gets it. God Bless Evans thank you for being here.

kdali
kdali in reply to DIsneyQueen

My poor choice in words 🤦‍♀️ I’m not leaving the group, but I am “done” making posts. I’ll be lurking in the comments! I can’t imagine that isolating myself from you guys would do me any good, and I think/hope the feeling is mutual. I want to go back to Disney 😭 It was 80 in Orlando when it was -4 here 😱 Thank you for being here too! 🥰

Just like real family - all family has its bumps in the roads. But family is always there for each other no matter what. We are an unique family brought together by a disease that is always changing too. If someone tries to argue or dispute something you have posted just ignore them. They will learn what we do here soon enough.

We are stronger together.

I’m pretty new here and don’t post much, but I do read comments often. I have learned a lot from the people here and hope to continue. Thank you for bringing an awareness, as I have noticed a change here recently. I hope we can all continue to support and encourage each other with kindness and knowledge. Blessings! ❤️

this is the kind of post that makes me feel very uncomfortable. Am I one of these newcomers who change the tone of the forum? yes, I do have mild paranoia.

when I don't care about a post, I just don't read it or reply or engage instead of fighting. I totally understand that everybody has their own view of the world and different interests. This is what makes life so interesting.

But this forum was so precious to me when I first got DX that I am very sad to see people leave. The more we are, the stronger we are. We just can't expect 5,000 people+ to share the same view.

I'm just back to being a professional patient, with at least 1 appointment a week, and when I've been allowed to stay home, I've been trying to get my $50 back from a digital thief. So, I'm just trying to catch up.

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