Chiari Malformation Community
WEDNESDAY'S WINDOW~~~~~
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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WEDNESDAY'S WINDOW~~~~~

HI all...today's thread is a window to what u have learned......

                                        about chiari....
                                                    about ur self.....
                                                            about others around u.............
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About Chiari......It's life changing!

About me......I'm sick and tired of being sick and tired......


About other around me.........Life would be pretty awful without my Family & friends even if they dont always understand just how I am feeling.....
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620923_tn?1405964489
about chiari- finding out, the light bulb over my head finally lit, it all makes sense now....I had a common thread to a life of pain ......and that it is a life long issue.

about me- I can handle more that I ever gave myself credit for....

about others around me- well, many I learned over the yrs they do not want to really know how u r when they ask.....and many r self absorbed...human nature....a frailty of the species...and fear the unknown...they avoid what they do not understand or  makes them uncomfortable. So, I found myself more understanding of them.....it still hurts, but I understand.
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1063386_tn?1287882169
About chiari: it exisits.  Never knew anything about it. Not exactly covered in nursing school.  And now I am learning more each day

About myself: that I can not do it all. Not even close

about others: there are so many out there suffering like me and they all take time to listen to me whine even though they too need to whine sometimes.   Family and friends don't have to come fromyour own home town...
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About Chiari.... It stinks, it really really stinks. It's painful, confusing, and down right hateful! Lol

About myself... That I actually have a reason for all these symptoms and for the reason I complain so much. I've learned or trying to learn that I just can't do everything I use to. But then again there are somethings that I do anyways bc I refuse to let this chiari get the best of me or get me down. I usually pay for it but I'm also tired of saying "I want my life back" bc I'm still alive, I'm still here, I still have a wonderful husband and 3 amazing kids that I love with all my heart and they love me and they need me! So I'm here, and I'm not going anywhere so I refuse to let these HA and other symptoms keep me from being there for them. When I do do these things for them that maybe I shouldn't I do pay... I hurt so bad I can't sleep and I want to cry from the pain and sometimes do even though that makes it worse but I try to save this for after they are all asleep and in bed. I will admit that sometimes I do have to say no or just not do stuff I want and I'm thankful that they understand.

About others around me... Most are curious and worried about me and understand for the most part. But I've learned there are just SO MANY people out there that has never heard of chiari and even a few I have met that has some of the same symptoms. God gave me this disease for a reason so now it's up to me to pray and find out why so I can fulfill his will. It may be that with me having it I could be the one to save another or bring the awareness so that others can finally get the right dx. You never know!


But I know I'm so thankful to have found this group. I don't know what I'd do if I didn't find y'all after my dx. It's nice to know I'm not alone although I hate that there is so many of us suffering from this! Love to all!
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Wow... Sorry that was so long!
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About Chiari: what it is, and it's probably why I've suffered from chronic headaches since I was about 10 years old.

About me: I can get through anything, but I can't do everything. I can't be Supermom and Superwife and Superhousekeeper any more.

About others: don't expect them to help you. I've been seriously let down by family members who I'd bend over backward for and have, but who haven't lifted a finger to help me and my family in our time of need. This includes my mother and little sister that I practically raised.  I've also learned that husband really can cope and manage the kids and house without me doing everything.
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620923_tn?1405964489
about chiari- it is always going to be there.


about me- I am always going to fight back


about others-if they don't have chiari..they don't want to hear about it.
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1063386_tn?1287882169
About chiari and self....... Diamox helps........  

About others. Most docs don't pay attention long enough to what you are saying to try a medication that is right for your symptoms.......

I had a normal day.   I forgot what it felt like to have a single Tylenol help my headache. I cleaned and played with my kids and even did some easy basic yoga..... Oh how I missed it all


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Chiari has taught me that I am a lot stronger of a person than I thought.....

Have a good Wednesday everyone!!

Carolyn
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Today I think I want a new head. I thought i was ok to work but two days im and I feel like death.   The pain is beyond control and the diamox helps...... Just not enough I guess
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620923_tn?1405964489
I learned...I can not do everything I want...and that everything I may want may not be good for me...so I have to edit what I think I want to get to what I need.
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what i have learned about chiari is that it challenges me daily to be more than i ever thought i could be.

what i have learned about myself is that i am stronger than i ever thought i could be

what i have learned about drs is that if you are devoid of emotion, they will listen.
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620923_tn?1405964489
I have learned to accept my chiari memory...only some days..... I forget I accepted it : (
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I have learned that my new chiari family is priceless!!!!!!
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1451338_tn?1316106367
About Chiari...I'm still learning about it...and I still don't don't if I have it (or does IT have ME??).

About myself...I'm still learning about myself. As I learn more about Chiari, I learn more about myself, and learn to come to terms with some of the things that upset me about myself.

About others around me...The people that truly love me are those that stand by me and don't get frustrated with me. They let me nap and understand when I have to bow out of commitments because of headaches. They don't try to pass it off as stress or just being to busy because they think they I'm just not making time for them. I am grateful for my family, my friends, and my new Chiari family!
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620923_tn?1405964489
About others..well...since many can not see chiari...or my scar since my hair has finally all grown back to one length....they r forgetting.

Still learning my limitations...we all know if we do too much, we pay later...that still goes after surgery too.
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1451338_tn?1316106367
About others around me...some are willing to listen more and see the similarities between what I've been going through and what the Chiari research says...and some are taking me more seriously...
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620923_tn?1405964489
hmmm well I learned more this week about a related condition...and I now wonder how much of my pain was from this secondary condition and what was from chiari.

my window is a bit cloudy...I got to do a bit more research to understand this.......I just wonder y some of us with chiari have these "xtras"....and some do not.........
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620923_tn?1405964489
about chiari...just when u think u understand it...u turn a corner and find u r totally confused.

about me- if  I really need to, I will take meds.....but I still don't like it.

others around me- there r some that will never understand bcuz they  choose not to.
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ABOUT CHIARI:  It is the most misunderstood and miseducated diagnosis I have ever come in contact with.  It can be responsible for so many different symptoms, but it takes a specialist to realize that.  Though the diagnosis was a mystery, shock and unexpected blow, it defined so many things that were going on with my body, that I thought was me being lazy, not caring and simply stress pain.  I thought everyone else was going through this too, and I just wasn't handling it as well.

ABOUT ME:  I have learned that I can give in to meds if they are going to help me.  Something I have struggled with all of my life.  Not a good pill taker.  I have learned that neurosurgeons aren't God and that I have to be in charge of my own healthcare.  I have learned that my body is never going to be the same pre Chiari onset of symptoms and I have learned that fighting rest isn't going to help me or my family.  I've learned to not go into detail with others about my symptoms...it causes frustration on my part.

ABOUT OTHERS:  They don't understand...they simply don't understand.  If they ask how you are doing, and you start to tell them, I find you lose them in the first 15 seconds. haha.  
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I am having a chiari moment...when I remember what I was going to say...I will post...in the meantime, I hope others have revaluations...
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997898_tn?1303738464
what i have learned about chiari is that it comes in costumes of many colors, comes without invitation, warning or notice and takes what it wants.
what i have learned about myself is that i would have made one heck of a radiologist!
what i have learned about others, ie..doctors, is that they have tunnel vision and see only in black and white.  that in order for them to help me, i must first do my research, diagnose my problem, convince them that they are wonderful to have thought of it so i can get the tests i need to confirm the diagnosis and then pay them money for my efforts. what i have learned, is that i am in the wrong profession!
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1372734_tn?1309953837
I have learned that we have to become our own advocates for anybody to take us seriously.

Why Why Why  its just not fair, its unjust and down right disgusting.
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620923_tn?1405964489
I learned that time has a way of surprising us.....and that we can begin to feel better post op.....

Chiari has so many sides to it , I am not sure I have seen them all yet......meaning all the xtras members r dealing with post op...PTC, seizures,slump etc......


instead of others that I know outside the forum I will mention those that come to the forum...others means other chiarians- too many r quick to listen to ne NS that offers surgery seeing it as a "fix" when many times it leads to more issues...I beg u to research several chiari drs b4 making a choice......be open to hear what those that have gone ahead of u have learned by their mistakes...and positive outcomes.
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Selma, Sensible Advice that I 100% agree with :)


Ray
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about chiari....not enough - DS was just diagnosed.

about ur self.....that I will not be able to adjust to this without a lot of help, and more importantly, that I can accept that help.

about others around u...that they are providing me with perspective to make good decisions that make my son feel like he's a person, not a condition. Reminding me of the whole child and not focusing on one little section of his noggin.
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what have u learned about chiari...urself and others on this  journey ?
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Well ........ 1 step forward 2  steps back.
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620923_tn?1405964489
what have u learned this week?....I am still at  last weeks status......
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1179332_tn?1297482590
I have learned that I am a lot stronger than I realized...

I live in chronic pain daily but am still able to take care of my kids, the house and maintain my life. Though sometimes those choice do make me suffer more, it is those things that keep me going and happy:)

So...I know that I have the strength to keep pushing to get the answers and the help that I need to keep improving.

Carolyn
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