Learning how to accept chiari as part of my life

Im trying my best to accept the drastic change my life has taken. Learning how to accept that I can’t do a lot of the things I use to love honestly sucks.
Today a friend told me that god will never lead me in a path that his grace can’t protect me in, I for once hope is true.
People are always so surprise to find out I’m sick since I have become an expert on faking it. I figure since I feel like hell everyday all day why do it with a sad look on my face. But honestly I’m sick of being sick every day. I’m frustrated and sad but my hope is high. I just want one good day, a day when I feel great, can go outside early with the sun shining in my face without giving me a migraine, A day where I can be adventurous with out having to worry that im going to get dizzy and fall. Can you guys imagine, A NORMAL DAY!
That has become my constant wish.

Till then I’ll keep taking it step by step, day by day .

Thank you. I’m actually seeing the ns for the for the first time tomorrow. I’m excited and anxious. I have a list of questions I’m asking him. I’m all ready with different MRIS and every piece of information I have collected In my hospital about my current health state. He better be ready cause all the questions I have might overwhelm him.

I have the same wish, my day started of really nice. The crisp fall air, sunshine i went out to milk my little goats looked at all my barn yard animals and did pretty good til about 2 p. So not to bad, for today the glas is half full ! Thank you Lord for a blessed day.

Hi,

My name is Melody. I am 54 years old and I totally thank you for posting. My life changed as well. It is the way people look at you is the thing that gets me.. But I am determined. Each moment I am learning to acceptthis new me. I used to drive and go places all the time...you know like out with friends...I was the loudest, laughed the most and just had a good time! But then I got dizzy. Yeah, like being on a Carousel every single day. Can you imagine? Yes, it's true. That has been since 2010. All my doctors tell me they don't know what to do. They even Shrugg their shoulders!!! But I am optimistic! And each day I thank God for life and each day I am trying to reinvent myself. So I agree with you....take it step by step. That is what I am doing.

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Hi Melody,

Thank you for sharing your story. I understand completely how ignorant people can be. At first look I don’t look sick. On the outside I’m perfect. So when they see me a 21yr old vomiting and with migraine I’m either pregnant or with a hang over. I dont even drink. Maybe a glass of wine on a good day with my girlfriend.

How did your appt. go?

I hope your appt went well, we are all in your corner!! Please let us all know

Thank you guys so much for your support. I was really sick and felt very disoriented, couldn’t even think straight the day of my app. Thank god for my girlfriend who advocated for me and led the conversation with the NS. So far I really like him. He seems very knowledgeable on chiari and was very focus on gettin my pain under control. He sent me to get more mris, a lumbar mri an mri of the brain with and without contrast and a full spine mri. I also have another one just can’t remember right now the name. Im going tomorrow and tuesday to get them done and will be seeing him on the 15. Depending on what comes out on the test he will be able to tell me if I need surgery now our it can hold off. He also gave me the information for another neurologist since I’m so unhappy with the one I have now . Staying positive and strong, and hoping that he can really help me.

Hello there...just wondering how everything went? I have an MRI scheduled for December...oh how I hate them. This headache ...and burning in my neck and shoulders...I try so hard not to take the meds to help me sleep but it is getting difficult. I just don't want another surgery. Life has to get better for all of us! I refuse to give in and not praise God for bringing me this far.