It's all in your head

it’s so hard having Chiari and Fibromyalgia and not having family or close friends not believe that you have this they think you are making it up… this is one of my most frustrating things about having these both… I try to keep my head up but even when i have issues I don’t have support at home… the only support I have is my daughter who has Fibromyalgia, Rheumatoid arthritis and AS… I am glad for this website and support from everyone here. Even tho I am not on I still know you are there

I totally agree with you Susan I have no friends close and family doesn’t understand except all 3 of my kids but especially my daughter But to have this site is a blessing!!! Thank you Susan for being there!!!



Susan Erickson said:

Linda,

I can relate to this soooo personally.....all of my friends, outside of this site who even want to try to understand do not live anywhere near me.....My family doesn't understand....I get more understanding and help from my 7 year old daughter, almost 8 years old (on April Fool's Day) than I do from anyone that does not also suffer.....I have NO friends where I live......

All of my friends live in other states, far away.....This site is truly my lifeline....I am also alone, at least geographically speaking but when you get to know the awesome people here on this site, it has changed my entire outlook on friendship and caring AND FAMILY.....I consider this place my true family, cuz everyone truly understands exactly how I feel and exactly what I 'm going through no matter what, there is someone who understands everything!!!!!

I'm so glad to have you here with us.....I hope your making and sending friend requests so you can get to know everyone better.....You will seriously make life long friends here!!!! It's amazing how much this site has done for me....This site and two certain people literally saved my life when I first got the CM diaganosis......This place is a true God Send......I constatnly thank Ben for starting this site, which is so truly different and real compared to any other site out there......

Looking forward to getting to know you better my friend!!!!

Much Love,

Susan

417-619-6895, I'm always up until at least midnight every night....I'm just not a morning person especially now that I'm not working.....I'm always here for you and so is everyone else here my friend!!! You just got a whole new family and set of friends who truly get you and care for you and understand you!!!!

P.S. Anytime you feel alone or need to talk, you can always call me honey.

I definitely relate. My extended family are all supportive, as well as my younger children -as best as they can be at their ages. My oldest 2 and husband literally roll their eyes. They won’t glance at my MRI’s nor will they read any reports. When I ask for some compassion and grace I’m told its not all about me. I’m at the place where I’m asking the Lord to help me wake up/recover from surgery with amnesia of all the hurts I feel as a result of their responses as well as other things.



My MIL told me to wear a button that says my brain is falling out get over yourselves. Lol. She’s not very happy with my “support system” here. Even people in our church are reacting the same way. Those that feel they’ve invested much in our family as former missionaries act like I’ve sabotaged my husbad. He acts like I’ve sabotaged the kids education because Chiari and homeschooling don’t mix to well and we will have to put them in Public Schools because he can’t make enough money to pay for private. Nevermind that we can’t afford the homeschool books either.



Its all very discouraging. I thought I had a fabulous support system…not anymore.



Debbie

Linda, I felt the same until I found this site. Here you have unconditonal support from those of us feeling exactly as you do. It is comforting to talk to everyone here since they don’t question your problems- they live them! Good luck to you!

Linda,

One of my docs told me humbly,..'lori,i have never enven heard of Chiari..i had to research it..so to expect othersto understand what you are going through is near g inhe went on to tell me to try and educate them..i tried..some 'got it'..most did not..."BUT YOU DON'T LOOK SIcK!!"

great

..thanks!!! lori

Hey Linda:

I am so glad you found this group....let me tell ya..these folks understand and 100% behind you....i am happy that your daughter is supportive, at least.

Others don't seem to get the stress Chiari puts on husband/wife r elationships, huge financial stress..you name it..it is somehow effected by Chiari.

i am just like Susan..I have no real friends here,where i live...we moved 350miles away from 'home' b/c my husband had lost his decent paying job and couldn't find a comparable job in over 2 yrs...SO..1 week out of the hospital we began our search for a new place to live and a job for him...we found the small 'village' where we live now...

the house prices are ,let me put it this way..our home in Rhode Island was $250,000...ok house, nothing to brag about!!

The Good Lord was gracious , with us...after many road trips up here, looking at so many communities, we decided on Seneca Falls, NY...looking back..it was only by the Grace of .we made it through that huge move. Our home here is much nicer than the one we left...and only cost $65,000...with a pool and deck!!! God had a plan!!!

Why i even brought the moved up was..the lack of moral, nevermind financial help during this time...it stuns me to this day(if i think of it..try not to!!!) that all we got was..'how can you do this to us,take the kids away from us'..'Tell Michael to just get a job!!" Now that really ticked me off....does anyone think he wanted to claim bankrupsy????

Thankfully, my name was not on anything!!!!! that made it possible for me to get a house in my name only..

but the entire ordeal..hubby laid off, me trying to get Dx'd..it was all very hard on us emotionally , our self esteem was in the t,oilet...I had to quit my job when Sx's made my job dangerous for others(I worked as a ..Donor Specialist"..fancy title but no big deal really..i would take possible blood donors med history, ect...then take a pint of blood from them..using a 16 gauge needle...which is HUGE..size of the tip of a pen..so when Sx's progressed i left.

That was a major loss for me..not only $$$ wise..i only worked PT...but self worth,self esteem, felt like a loser!!

Looking back at that too, not 1 person thought it was sad for me.."Must be nice,hanging around all day" major depression and anxiety came on....I would get ."but you look good!'...no empathy from family. I do have 3 friends back near and 1 in RI....real friends listen to you cuss, yell,complain,and listen to your tears..thank God for cell phones!!

But honestly, now, these days..I have you guys to help me through the hellish days...not b/c my 3 lifelong friends don't want to hear it..its just that you folks are going thru many of the same feelings emotionally and physcically as i am.

for that, i cannot thank our community enough!!!!!

I try not to hold resentment in my heart over those who showed me no compassion nor empathy..resentment only hurts the one holding on to the hurt and resentment.

SO, TEAM CHIARI......LET'S KEEP ON BEING HERE FOR ONE ANOTHER!!!!!!!!!

LUV YA'S

Lori..AKA.....CUSTER..LOL