Aa
You know u have chiari when~~~~~~~
finish the statement.
This is a fun thread we have done b4...seems the right time to do it again......
This is a fun thread we have done b4...seems the right time to do it again......
OMG! Would that not be the most wonderful feeling in the world! To know you were surrounded by people who not only cared about you but who actually understood what you were going through! That would be so nice, as hard as our family tries to understand...without having BTDT it's hard for them to truly understand what we go through on a daily basis. God Love 'em they try! But it's not the same as someone that goes through the same thing you do everyday! :)
COMMUNITY LEADER
Exactly and we will be surrounded by others that know just what we r going thru......
Yay! Sounds awesome! Lol!! That way we can hand pick the best, and they will not only understand but won't give us all the run-around!!! Lol!!
I like the idea! Let's do it in a nice warm climate! I can't take the cold! Lol!! Sorry my post was so long everyone!!! :)
....can't watch video's of your son's games or of him fishing...or anything really because the vertigo makes you sick!
....can't read a book or anything else up close because your eyes mixes it up in your head somehow and it makes you nauseous.
....the floors in stores! Really!?! Just once I would like to go in a store and not get dizzy, nauseous, and not only feel but look like I'm drunk because of their floors! I have enough trouble with it on my on thank-you very much!
....when you have to sleep with a night light now because you wake from a dead sleep (which you don't get much of anymore!) because all of a sudden your head is spinning off of your shoulders and your brain is spinning inside of your head at 1,000 miles an hour and you need something to be able to focus on every time it happens! (20+ times per night)
....you drop everything because because your arms and hands go numb, including the chicken noodle soup you've made for your sick baby!
....they tell you it's not the Chiari making your hands and arms go numb...has to be bilateral carpal tunnel that affects the radial and ulna nerves in both arms because they just happened to do the testing when both of your hands are dead to the world!
....Dr. tells you he's afraid to refer you to another dr. because even though he knows you have all of these symptoms the one he sends you to will think your a hypochondriac if either one of us tells him what all of my symptoms are! Seriously!?! LOL! how do they expect you to explain your symptoms then? LMBO!
....your heart races and feels like it is going to pound out of your chest (jump out) at the same time. The feeling goes away but talk about disconcerting! Ok...downright scary! LOL!
...Serious case of CRS!!!! (Can't Remember Stuff!) Lol!
....what was I doing....oh, yeah! Lol!
....when you can't walk outside without your family holding their breath or fussing at you about about going outside when nobody's home because you keep getting in fights with the ramp and the ramp wins! Lol!
....you have no choice but to walk with crutches...but when your hands go numb.... you know what comes next! :)
....the kids at your son's school all know that they have to look out for you to make sure that you don't fall, not just because of the crutches! They all know and come running to my truck to fight over who gets to help me carry stuff inside and if they don't carry it in they want to be first in line to help me carry stuff back out!!
.....can't sleep..no matter how tired you are, the HA, the pain in the neck, back and everywhere else!
....you need a translator half the time! Sometimes my son has to translate for my DH or family or friends, sometimes it's my DH trying to translate! Lol! My dyslexia makes it hard enough, mix Chiari in there and boy howdy you've got a mess!
....your DH has to take over many of the things you've always done....grocery shopping, laundry, supper, etc....
....you walk into your son's room to check on him, walk outside and call for him, not worried yet...drive next door to mom and dad's (they live right next door but I can't walk that far most days, call again...ask mom and dad if they've seen him...nope....ok, panic starting to set in! All the horses are in the pasture I am yelling out of my truck window despite the pain in my head, no answer...this is NOT like my baby!! I come back in the house to see if he's taken his cell with him and call his name as I come through the door, tears in my eyes because I'm upset! Out walks my little man..."Hey mom, are you ok?" I ask him..."where were you? I came in your room earlier and you weren't there so I went looking for you..." Mom," he interrupts me.."what baby?" I'm a little forceful with the baby portion of my question because I'm still a little upset with him..."You came in my room and looked right at me and turned around and walked out, I thought you knew I was in there. Next time I'll just say I love you so you register that I'm there, I love you". I felt so small! Here I had lost my son and he'd been right in front of me to start with my brain just didn't register him sitting quietly on his bed....It's happened with the animals, sunglasses, keys...you name it! But really, my son! I now call his name before entering his room I will NEVER NOT see my baby again! Chiari makes me lose enough, I will not "lose" him too!
....your eyes...your seeing stars and they aren't from Hollywood! :)
....when people constantly say.."are you sure you don't have MS? Maybe you just need to see a different doctor." Yes, I need to see a different doctor..a Chiari specialist...No! I don't have MS!
....your ears hurt they ring all the time!
.... sound is amplified thousands of times and it's like fingernails on a chalkboard...at the same time every nerve in your body is on hyper alert and even the slightest touch is like an electrical current passing through your body and you almost want to cry at the thought of someone touching you, you have to go and take breaks from your family so you don't hurt their feelings because you can't tolerate the sound or the touch's. (no matter how bad you may want them!)
....when someone starts complaining about their HA's and the symptoms they have you ask when's the last MRI and the first thing that comes to mind is could they have Chiari too?
....you have a hypersensitive gag reflex! Hold a pen with your teeth? Whatever! Teeth cleanings are not pretty!
....you forget how to swallow your food when eating...or it gets stuck right after you've swallowed it!
....I resemble all the remarks on this page but had to make a few of my own Lol! Probably repeated most of those on here...had to keep coming back to it as I kept forgetting what I wanted to write! :) Sound familiar? Lol! I'm hanging in there like hair in a biscuit as I know all of you are! :) With Chiari that's the name of the game you may not be in control of everything and there may be times your just along for the ride...but you take control of the things you can and always, always...no matter how bad it may hurt, no matter how bad you may feel, smile and look for the good things in your life! :)
....can't read a book or anything else up close because your eyes mixes it up in your head somehow and it makes you nauseous.
....the floors in stores! Really!?! Just once I would like to go in a store and not get dizzy, nauseous, and not only feel but look like I'm drunk because of their floors! I have enough trouble with it on my on thank-you very much!
....when you have to sleep with a night light now because you wake from a dead sleep (which you don't get much of anymore!) because all of a sudden your head is spinning off of your shoulders and your brain is spinning inside of your head at 1,000 miles an hour and you need something to be able to focus on every time it happens! (20+ times per night)
....you drop everything because because your arms and hands go numb, including the chicken noodle soup you've made for your sick baby!
....they tell you it's not the Chiari making your hands and arms go numb...has to be bilateral carpal tunnel that affects the radial and ulna nerves in both arms because they just happened to do the testing when both of your hands are dead to the world!
....Dr. tells you he's afraid to refer you to another dr. because even though he knows you have all of these symptoms the one he sends you to will think your a hypochondriac if either one of us tells him what all of my symptoms are! Seriously!?! LOL! how do they expect you to explain your symptoms then? LMBO!
....your heart races and feels like it is going to pound out of your chest (jump out) at the same time. The feeling goes away but talk about disconcerting! Ok...downright scary! LOL!
...Serious case of CRS!!!! (Can't Remember Stuff!) Lol!
....what was I doing....oh, yeah! Lol!
....when you can't walk outside without your family holding their breath or fussing at you about about going outside when nobody's home because you keep getting in fights with the ramp and the ramp wins! Lol!
....you have no choice but to walk with crutches...but when your hands go numb.... you know what comes next! :)
....the kids at your son's school all know that they have to look out for you to make sure that you don't fall, not just because of the crutches! They all know and come running to my truck to fight over who gets to help me carry stuff inside and if they don't carry it in they want to be first in line to help me carry stuff back out!!
.....can't sleep..no matter how tired you are, the HA, the pain in the neck, back and everywhere else!
....you need a translator half the time! Sometimes my son has to translate for my DH or family or friends, sometimes it's my DH trying to translate! Lol! My dyslexia makes it hard enough, mix Chiari in there and boy howdy you've got a mess!
....your DH has to take over many of the things you've always done....grocery shopping, laundry, supper, etc....
....you walk into your son's room to check on him, walk outside and call for him, not worried yet...drive next door to mom and dad's (they live right next door but I can't walk that far most days, call again...ask mom and dad if they've seen him...nope....ok, panic starting to set in! All the horses are in the pasture I am yelling out of my truck window despite the pain in my head, no answer...this is NOT like my baby!! I come back in the house to see if he's taken his cell with him and call his name as I come through the door, tears in my eyes because I'm upset! Out walks my little man..."Hey mom, are you ok?" I ask him..."where were you? I came in your room earlier and you weren't there so I went looking for you..." Mom," he interrupts me.."what baby?" I'm a little forceful with the baby portion of my question because I'm still a little upset with him..."You came in my room and looked right at me and turned around and walked out, I thought you knew I was in there. Next time I'll just say I love you so you register that I'm there, I love you". I felt so small! Here I had lost my son and he'd been right in front of me to start with my brain just didn't register him sitting quietly on his bed....It's happened with the animals, sunglasses, keys...you name it! But really, my son! I now call his name before entering his room I will NEVER NOT see my baby again! Chiari makes me lose enough, I will not "lose" him too!
....your eyes...your seeing stars and they aren't from Hollywood! :)
....when people constantly say.."are you sure you don't have MS? Maybe you just need to see a different doctor." Yes, I need to see a different doctor..a Chiari specialist...No! I don't have MS!
....your ears hurt they ring all the time!
.... sound is amplified thousands of times and it's like fingernails on a chalkboard...at the same time every nerve in your body is on hyper alert and even the slightest touch is like an electrical current passing through your body and you almost want to cry at the thought of someone touching you, you have to go and take breaks from your family so you don't hurt their feelings because you can't tolerate the sound or the touch's. (no matter how bad you may want them!)
....when someone starts complaining about their HA's and the symptoms they have you ask when's the last MRI and the first thing that comes to mind is could they have Chiari too?
....you have a hypersensitive gag reflex! Hold a pen with your teeth? Whatever! Teeth cleanings are not pretty!
....you forget how to swallow your food when eating...or it gets stuck right after you've swallowed it!
....I resemble all the remarks on this page but had to make a few of my own Lol! Probably repeated most of those on here...had to keep coming back to it as I kept forgetting what I wanted to write! :) Sound familiar? Lol! I'm hanging in there like hair in a biscuit as I know all of you are! :) With Chiari that's the name of the game you may not be in control of everything and there may be times your just along for the ride...but you take control of the things you can and always, always...no matter how bad it may hurt, no matter how bad you may feel, smile and look for the good things in your life! :)
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