Chiari Malformation Community
today is a bad HA day.....
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today is a bad HA day.....

I'm tired of feeling alone and scared. I literally have no one to turn to besides this forum. I feel my family avoids me so they don't have to hear my issues. I hate this. I'm left alone to cope on my own. And when I do talk to family about not feeling well I feel like no one listens. I'm askng for help and comforting and get none. So latly I keep my mouth shut and they think I'm fine. Its getting to hard. Even tho people are around, I'm so very alne.....
9 Comments Post a Comment
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1925822_tn?1333709217
I understand u soo much.i had a drop attack today...after i rushed to a date.i got so depressed i almost lost consciousness and had such a vertigo.i made an appointment today with an ns to see if he is an option for fusion.my bf was like why are u changing doctors again...and i lost my mind...i noticed he doesnt listen of what i am saying plus keeping me busy with his stuff...and theres no one i talk to as nobody understands.i resigned and take it as my burden,but its hard....u r not alone...although it feels like this a lot.sending u hugs
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1823499_tn?1370093889
Irislita- u need to do whatever it takes to find a dr that will help u, as long as they are well infirmed of chiari. Be careful please. I am here for u sweetie. Going thru this alone is horrible. Big hugs to you my dear. Love,Dana
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979826_tn?1389039958
<3 hugs and prayers!!
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3060676_tn?1371241540
I talked to one of the member on here last night about this issue. The thing is that our family members/ loved ones, while we are so grateful they do not have to go through these things, they really cannot comprehend what we deal with. They have never been in this much pain or felt this bad for so long. They have never had to be so scared of losing their lives while finding doctors to help them! It's hard to be scared and proactive at the same time. Sometimes I try humor, but that doesn't work. I think they are scared just like I am. They are scared of losing me or losing the person I used to be and that is terrifying. But they aren't on this side, feeling the fear and doing it anyway. Sometimes the best way to cope is to not deal with it. I've had family members ignore me. But we cannot ignore our issues, they won't go away! Some family members get mad and change the subject because they just don't want to talk about it or think about it. It is such a hard balance- keeping people informed but not telling them too much to upset them. Just know that here, you can talk and not have people be uncomfortable by the craziness that is our lives. We don't judge and we are have been in similar situations. It is so freeing to talk to people who "get" you! It's like gossiping with a good friend! Vent away!! :)
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1925822_tn?1333709217
Thanks dana i am always there for u!!!btw do u have a messanger on ur mobile called whatsapp?i can pm u my number and u can text me for free anytime u need to talk!!! I am starting ns runaround again,but i take my time.the ns i see on monday is part of neurosurgants of the chiari specialist i went.he does decompressions and is a very experienced man.lets see...my plan is to do fusion in january/febuary next year...no longer i cant take this.dont feel alone we are there for u
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1546631_tn?1321646804
You're not alone <3 All of us are here for you. I wish we could all just get fixed and be happy, damnit lol. It is a hard road but there will eventually be a happy ending. Anytime you need to talk, I'm here :-)
Lots of hugs---Ashley
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620923_tn?1393294254

  Dana...it is easy to feel alone in a crowd....but if u do not tell them how u feel then u can not blame them...YES, we want those that love us to look into our eyes and see our pain...but it doesn't always work like that....

U have to tell them....and know u r never alone with all the friends u have here....keep popping on and letting us know....we are here for u <3

((hugs))
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3228911_tn?1351185901
You can vent to me any time you like!  I know you have been having a lot of different issues lately and I know it is hard to find someone to talk to that understands.  Sometimes we all have to deal with family members that are too wrapped up in their lives to listen, not just hear, listen.  Just know I am here for you!! ((Hugs))!!
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4320028_tn?1365818075
Got together with some friends for a bbq the other day. I am so tired of sitting around and i know my husband and kids are getting stir crazy so i decided to go. They are close friends so i knew that if i got too tired i could rest. The entire time everyone kept telling me how much pain i looked like i was in (duh! !l and how bad they felt for me. My friends and coworkers call Me every day/ every othrt day and ask how am i feeling, any new yet. I appreciate all their concern, but Im.so titrd of being like NO i don't feel better.  YES my head still hurts, etc. I know what u mean about keeping ur mouth shut.  Im sorry u feel so alone, i know the feeling. Surrounded by people i still feel alone, because no one really understands. Hope ur day gets better. Im Here if u want to vent...
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