Understanding!

Support
1

Folks,

Today, I was busy with My mother. She will be 85 tomorrow, and my daughter and I wanted to do something special for her birthday, so we took her lunch, then I had some other appointments. I checked our site, and my heart sank with Lori's discussion on acceptance. What do you all think the new folks think of us? Lori's discussion was meant to let folks come to terms with their condition and write it out. Instead of something being meant to be helpful, turned into a total bashing between some of our members.

I know some of us still have a lot of chiari issues, and want to talk about it here. We are turning folks off, by treating each other without respect. We all need UNDERSTANDING, WITHOUT JUDGMENT AND ALL THIS BICKERING.

This site was created for us to help other folks. Helping folks does not consists of all this bickering, so I am asking everyone to please use respect for one another. Before something is written out, think about if it is hurtful and unkind. For Gosh sakes, we all got Chiari, and living with it is hard, and we deal with stuff most folks don't have to deal with. Though it not be cancer, it is just as bad in ways.

I am one of the longest members and administrators on here and am disappointed something that was created to help folks especially those newly diagnosed to learn about Chiari, and get some support from us, the ones that have been diagnosed for a while, and know about it. What kind of message are we sending to our new folks?

Shirley and Julie, I am so very thankful that you both had great results with your surgeries, and had the best of doctors, however, we have some folks who did not use the facilities you both did, nor the doctors you both used. Some folks use the doctors they have to use. The percentages on successful surgeries, is not that great, and until more research is done, we all are in the same boat. We have folks on here that have to use state agencies for help, and folks who want to learn about what works and what don't. We have folks who are scared to death, and need assurance and support from ALL OF US!

THIS SITE IS NOT ABOUT ME, IT IS ABOUT WE. So please folks keep it nice, keep it truthful, keep it where folks want to come on here, and don't push something down someones throat, that does not apply to them, or push you point to where it may offend someone.

I prayed for a site that I could come to get support, and this place was wonderful, we have wonderful awesome folks here who really want to help others and be there for one another.

GOD BLESS,

Abby

2

These are wonderful sentiments Abby. thanks so much for sharing. I loved the part about having everything in perspective and how so many people are coming here for the first time seeking support. It’s a great reminder that we’re all here for the greater good.

3

Hey Abby,

I too, get uneasy when there is nick picking ,bickering going on, ect...My feeling is that this should be a safe , compassionate haven for those who suffer from Chiari Malformation. We are not docs..we share are experience, strength and hope...when we are having a hard day..share it, if you want to..hence "Support Group".

I have received so much understanding and empathy from many folks her..along with great advice(non-medical) that helped me. Chiari can be a lonely illness...it can be isolating. I would hate to think that I would have to worry about each word I type on how I am feeling...and I would want new members to feel they can 'let it out' if they have to.

The members here are great. Whenever you get a group of people together in discussion..someone at 1 point or another is going to get upset over something said..that, I think , is human nature. Personally, no one has offended me,harassed me , scolded me or any other negative action....I have only gotten respect, advice, a listening 'ear ' so to speak via personal message as well as discussion board. I thank all of you for your tolerance and acceptance of me.

I have good days, bad days...in between days..just like everyone else. I just like to know that I have a group to go to ..this one ..that i can be me....good, bad, the whole 9 yrds. I think that is the purpose of a support group.

With that, I appreciate you all. We may not have the same Sx's going on or the same life challenges as one another....yet we should be able to empathize with one another.

God Bless

Lori

4

HI..

had to add to this great topic on understanding..I have a couple of relatives in AA and they use mottos and I use the ones i like...copy cat, i know!!

But a good one came to mind just now..."Principles before personalities" Our main principle and purpose here is to help and encourage one another...we are all human,thus all different,yet share many of life issues and medical issues. We are a TEAM here....you guys are my team....you cheer me on when i am down, yet you tell me,nicely when I need to focus on other things...thank you team....we may not always agree...big deal....we can agree to disagree...I would just prefer it done through a private message if I ever hurt anyone in any way..deal???

Past my bedtime......20 yrs ago, I'd just be heading out the door!!!!

Blessings,

Lori

5

I am glad I missed what you are talking about I know it would have gotten me even more discourged about things.I enjoyed the chat the other day and I am going back on there next tuesday I have only met nice people so far it doesnt take much for me to shut down with people and just pull away my own isssue before I knew about Chiari I am glad I have found this place it is a good place to talk about life and understanding things so I will look forward to talking to you again got to get busy doing a little bit of cleaning.Love Angela

6

Susan:

Thank YOU for all you have done for this site. You give a lot of yourself..and I certainly appreciate it..i am sure others feel the same way.

I agree 100% with you that memebers should feel safe telling it as it is...the good, the bad the ugly...that is why we are here,isn't it?? To support one another, share tips, vent frustrations ,ect...as well as share goals which have been reached.

Blessings,

Lori

7

I’m loving this discussion.

8

Angela,

I hope that you are feeling better about the site today...we are glad you are here and If I can help you in any way pls let me know....We truly are here to help one another...some folks just have differnent ways of wording things and some folks don't like this or that..that is normal..we are all different.yet we have a condition in common ..I think thats

what we need to keep in mind...were here to share our stories, good and bad..I was just worried that you may have been 'turned off'..don't be....

Blessings,

lori

aAngela Lenoir said:

I am glad I missed what you are talking about I know it would have gotten me even more discourged about things.I enjoyed the chat the other day and I am going back on there next tuesday I have only met nice people so far it doesnt take much for me to shut down with people and just pull away my own isssue before I knew about Chiari I am glad I have found this place it is a good place to talk about life and understanding things so I will look forward to talking to you again got to get busy doing a little bit of cleaning.Love Angela

9

Jaime,

Nicely put!!!!!! Have a good day....We are all happy you are here and we want to be of support to one anther.

blessings,

lori

10

My Dear Chiari Family,

It takes all kinds to make the World go round. We are lucky to have a common bond here and are able to share our opinions freely. I would hope that we can all learn from eachother, take a walk in each others shoes. Just remember there are way more people in the World that don't get what we are going through or even worse mock us and call us hypocondriacts, or crazy while they roll their eyes and go on with their normal lives. If we can't be here for eachother, for an outlet and for support from fellow sufferers, then who can really be there for us. You may have people that are there for you and say the feel for you, but do they really? I can say that I do feel for you who suffer from the known and unknownand we are all free to speak our minds, but just remember we are all here for the same reason. Compassion for our fellow human beings. I am here for all of you as you have been here for me. I can truely say that YOU undoubtly KNOW what I have, am and will go through (depending at what point of the process you are in). Lets just keep in mind we are here to support and educate eachother and I promise that is my full intentions.

Again with my rambling, but I do truely love my Chiai Family and just wanted to let you all know that.

Much Love, Peace and Prayers to You All,

Crystal

P.S.: I also posted this on the "acceptance" discussion, just thought it was worth saying twice :o)

11

It’s worth hearing twice!!! Nicely put and sincere…thanks,Crystal!!!