What a combination of Chiari 1 Malf and Lupus Looks like

[cherylcerribruno]

You are a beautiful woman and I do understand how you feel. I have chiari as well and I understand the pain every day of my life. I wish you well, :)

[LetzNeverSplit]

I can only imagine how much pain and agony you go through.

I feel for you and my Husband and I will be praying for you.

P.s

I think youre beautiful.

you look like Ms. Honey from the movie Matilda.

[tharilyn]

@ericjones2494 "it's information..."

try learning about Chiari it's structural...food cant fix it dude.

"... most don't really know about it! Apparently you have never lived the lifestyle" Nor have you lived with Chiari!

"...cut out the negative!!! And you are rude to boot! GOODriddance to ya!" LMAO! U act as if we afflicted dont do EVERYTHING in our power, diet included to get well. Do your research...not rude at all..just real! Chiari and Fibro has wrecked me! I eat organic out of necessity!

[myigloo]

On you have every right to be angry! My friend just got diagnosed with lupus and the more Iearn about it the more upset I get. I hate that there are criminals and killers out there healthy and she can't even work. If I could take a part of your illness or hers, I would. I don't feel right being healthy, it's such a gift and people don't realise it. I keep on asking God to let us both live to 60 at least...I will give some of my years to her!

[ytzmefrjam]

U said u want the power to b able to touch some-1 so that they can feel what u feel. Who do u want to touch and Y??? I knw u might not b-lev this but i think u r a beautiful woman. U seem very angry though. I dnt av lupus but my dad has just been diagnose with lupus & he also has chronic kidney disease. I'm all over the net trying to learn all i can, so i may support him the best i can. So if anyone out there want to share. Plz and THANK U. Hw and what do i do?

[dslove63]

People who do not live in constant pain don't have the capacity to understand and those who judge will get there do. What goes around comes around. Hang in there and good luck your way.

[huska86]

well its not true im not from US just from slovenia a small country in europe and we have great doctors too...as they have it in Canada it is just about wich doctor u have....i had 2 rushes since now...i was pritty bad looking,,,i was in pain for 2 years day and night ...i gane waight(40 kilos) i lost my hair, my skin was a mess, my sight was damaged, my kidney and lungs too...but now im ok ...3 years without any pain ...my hair are beautifull, i lost some waaight...im the old one again:)

[CammhyTomassini]

Hello:

I undurstand you so much....because I have the same, Too much pain but remember tha we have God and He help us to survive in the middle of the nigth...I'm here in Spain if you need a friend.

[ilovenoy]

I was replying to lilmatt92890. I have relatives from Canada. Come to America! The American doctors always like to use the newest things. I know my doctors do. I don't know anything about Canadian doctors. My relatives are from Kitchener.

[Stevilee1970]

Ilovenoy, I just read your "private" message after I wrote my thank you to you. You appear so kind out here and then not so kind behind the scenes. Un cool my friend Uncool. I have Lupus as a side result of My Untreated Arnold Chiari 1 Malformation. Do you know what that is? As you called me Ignorant in my Private message? I know there are many kinds of Lupus. I have anticoagulant. Also If My ACM continues to go untreated, I get to look forward to ALS in My Future. So Yah I'm a touch angry.

[Stevilee1970]

That is so Wonderful!! Unfortunately, All the wonderful stories I have been hearing and all the wonderful Doctors I have been hearing about are all from the United States. I am from Canada. The Doctors hear seem to be lazy and sit on their laurals here. They would rather diagnose you, and then treat you with things they Know about, rather then learn about the Illness you actually have.

[pris72]

@Stevilee1970 I have read horror stories of those with any sort of serious health issues, when it comes to getting proper medical care for them in countries with a single payer healthcare system. I hate to know that people are made to suffer through pain, when there are things that can help. I know this video is several years old, but let me tell you. You have every right to be angry. You shouldn't have to live in pain like this. How are you doing presently?

[ilovenoy]

I have Lupus nephritis. I don't know the area you are from, but I have a great doctor from Wake-Forest Baptist Hospital in Winston-Salem, North Carolina. I see a lot of other doctors there and they are great. A lot of other people from other states come to see them. As far as Washington state. I know how important it is to find the right doctor. It took me 3 tries until I found the right hospital and doctors. So I know exactly how you feel. I had a kidney transplant 3 months ago and feel great!

[CALICOTV301]

Remain strong and continue to raise awareness Stevilee! Blessings. U have my support!

[Jennaration09]

I hope you're doing well. My mom has lupus and I have chiari malformation type 2

[Stevilee1970]

Hey Jenn. I hope you are keeping the Faith. I am still fighting the good fight. Always Looking for that special doctor (STILL) to help me. I AM NOW DETEMINED to have the surgery. But I have to find the Right doctor Now that will Help me. No matter what the outcome, it has to be better then this.

[nct9004]

i also have lupus anticoagulant and chiari 1-- is there a connection to the 2 . if so this was never explained to me. i want to learn more you are the first i've hard of with both. god bless you and i am praying for you.

[Lupusology]

My wife is totally disabled by Lupus. She would say the exact same thing as you do here. I see it everyday, she is not going to survive. She is 45 and has had it now for 30 years. I admire your strength as well as my wifes. I will have some videos up soon. Keep making these videos!!! As difficult as it may be lets show them the REAL disease!

[ho0dies4life]

repairs cells (dna even) anger destroys cells. I've been through a lot medically and this is the very best solution. best wishes strong lady! Medicalfield is a BUSINeSS!

[Kella86]

I feel like I'm watching a video of myself. The pain, diagnosis, botox, everything. I'm going to check out your other videos. My heart goes out to you.

[JaviExAmandi]

I have added your video to:

w w w . arnold - chiari . com

Thanks for all

[EveSerene]

Thanks for posting this and sharing your story. I am really sorry that you're dealing with all this. I just wanted to say I have Chiari2 malformation, Spina Bifida and severe chronic pain so I empathize with your situation and understand where you're coming from. Sometimes all we can do is take it one day, one hour, one minute at a time. But using our pain and misfortune, at least to me, to teach others makes it worth something. I hope you can find some relief soon.

Sincerely, Eva

[staceyc509]

For Stevilee Thank you for the info it's makes me feel less alone. Keep your head up we may not get to choose our lives but maybe someday we can get a medical break through or something.

[Stevilee1970]

Obviously you are very angry with your illness and feel the need to lash out on some one you don't even know. I also Have Arnold's Chiari Malformation. Do you Really know What that is? Or HOW severe it's stages Are?? Obviously not. If you Don't like what I have posted do not watch. It is meant to teach SOME People who are IGNORANT in how bad some of the treatments are to cope day to day. Perhaps one day you will become a little more sympathetic to others how are sick as well. God Bless.

[lilmatt92890]

look crazy bitch i have lupus and im 17 im a white male...your fucking over reacting its not that fucking bad so take ur fucking meds and you will be fine...BIATCH...and yes i have SLE so i no what its like but its not that bad just take ur fucking pills thats all you have to do

[staceyc509]

SLE is different for everyone little boy. Even mine isnt quite as bad as some but if you think its just as easy as take your meds and you'll be fine your dead wrong I take mine and I am NOT fine! Biatch needs to wake up and smell the coffee Lupus is not a by the book disease it affects EVERYONE differently

[EveSerene]

Hey "lilmatt" it's sad that you seem to feel the need to attack other who are already suffering and unless you have lupus AND A CHIARI MALFORMATION you have no idea what you're talking about. Chiari alone can produce 52 different severe symptoms. The worst of which is PAIN. So, you should really think about trying to show a little compassion or educating yourself a little more. What's true for you may not be for her. You really should be sorry for being so disrespectful. DO UNTO OTHERS...

[ilovenoy]

You have some anger issues, obviously. Lupus affects people differently. There is more than one kind of Lupus out there. Some people with Lupus are worse than others. Just because your young and ignorant, doesn't mean you have the right to lash out at people like that. Especially when they are trying to help others.

[Beachbumglcb]

I have Chiari I and Tethered cord. I have had the surgeries for both all in the last 3 yrs. I have the Lord to lean on for my strenght. I do know your pain and I use a cane and a walker. Get to the Chairi Institute in New Youk. Dr B. Youneed your Meds Changed. I went to a Paincenter and have all the root injection and other shots but none work.There is great help out there. You need to get there.Mercy flight can get you there if your broke like me. Get better help and you can feel better.

[Stevilee1970]

Thank you So very much!! The Lupus is a side affect of the Chiari, because it has been untreated for so long. I will talk to the idiot specialists I have here and see if there is anything they can do for me here. They have told me it is TOO dangerous because my brain Stem is farther down past the tonsils then most, and I only have a 20% chance of making it through the surgery. Really didn't like those numbers... But I will talk with them more about it. Perhaps they can send my pics there. Thanx!

[thev1011]

You CAN get health if you take charge of your lifestyle. You must check out "Go Raw Now" on UTUBE! Please, I beg you.

[tharilyn]

@thev1011 LMAO!! if eating raw food fixed Lupus or Chiari ... we would have been healthy YESTERDAY!

Please don't insult people stuggling just to breathe with your hogwash!!! I have fibromyalgia and Chiari and tried all the quack crap out there! In the old days people ran snake oil salesmen out of town on a rail... sounds good to me! Get lost thev1011 ... no one is buying your junk ... were too busy paying for surgery and medication!

Grrrrrrrrrrrrrrrrr!

[ericjones2494]

@tharilyn SHARING information about raw. Are you really mad about it?...it's information, not forcing anything on you. I only mentioned it because I understand most don't really know about it! Apparently you have never lived the lifestyle. It's not all about raw food, it's about cutting out that which is not, such as processed food and drink and YES, MEDication and TREATment but most importantly, cut out the negative!!! And you are rude to boot!  GOODriddance to ya!

[thev1011]

Please check out "Go Raw Now" on UTUBE.Most people do not get proper nutrition.You may also want to read "Alkalize or die" and in this book it list Lupus as a cause of too much acidity in the body. I don't wan't to know if I have Lupus(my dad and sister have it though)because I feel it unessesary to medicate.I experienced rashes/joint problems that are going away since I've been on the raw vegan diet.I do not trust pharm industry.My sister won't take my advise.But the drugs are killing her.

[LivingLupus]

I also have severe Lupus and I understand your pain! I hope you can stay strong although I find it very difficult to do this myself! Ignore the morons like filixr29! He's talking from ignorance! I am too weak but I have many friends and family who would probably knock his teeth out! Strangely enough although i suffer severe pain and renal failure the 1 thing that depresses me most is the fact that I suffer from severe facial disfigurement from my disease! Being resistant to all drugs is a pain!

[JaviExAmandi]

new forum:

arnold - chiari . com

[Stevilee1970]

Thank you for the Forum I will definately check it out!!

[mullercc44]

I do hope that they can find something that can actually help you. I just dont understand with all the things we can find why they cant find treatments or even better cure. I really hope that you can find some happeness in all of this you are going through. I hope that we can keep in touch, and maybe become friends.

[Stevilee1970]

If you do not like what I have posted do not watch. This comment is to all the vicious, heartless people that are out there. If you don't know what Chiari I or Lupus is and can do to a body and soul, do not post here. To Actually have a fellow human being state that I have "probably Offed myself aready". Is utterly the most Inhumane comment to some who is very Ill. God have mercy on your soul.

[mullercc44]

you sound like a person that stands up for what you believe in and for yourself. Good for you, your illness must be real if you are saying and reacting the way you are...I just joined and was just looking around and saw your video, thought i would say something. it was really ignorent for what he said, nothing that rud should be said he doesnt even know you. Thought i would defend you, good luck with everything..God Bless

[Stevilee1970]

Once again, Thank you so very much for your caring words. They mean alot.

Rudeness is just a defense mechanism of a fear of the unknown. He has apologized recently. He is just another person who is afflicted with an unkown pain, and is frustrated with his condition.

Once again thank you, and May God Bless You.

[felixr29]

why would you make such an apathetic self centered selfish video? what is the purpose of this?

not expecting a response, you probably off'd yourself by now. can't blame you, looks like you had no one to talk to, no close network of friends/family . . . sucks

[Stevilee1970]

Obviously YOU are a cruely and vicious human being! You have absolutely NO CLUE what it is Like to have your mobility, immunity taken away from you. Also it is obviuos you have NO understanding what it is like being in Pain 24/7. I forgive your inability to have compassion for your fellow human beings. And I will continue praying for your soul, because someone has to.

[felixr29]

oh give it a rest. I am in pain 24/7 . . . you don't know me. Why else would I be looking at a video like this? Do you think you were like in the top featured or something? NO, obviously, I searched for videos on this topic. I'm not discounting your pain and suffering but why do you have to make such a useless video? It's one thing to make a video about what you go through that helps people but you are just ranting to us about your pain.

[Stevilee1970]

For your information The Video that you watched was to all the nay sayers and Doctors who give you a whack of medication and tons of needles ( my treatment 75 evey month). I have been living with this condition for many years my friend, and I am FRUSTRATED with our so call health system and Idiots who look at you and say well you look normal so you are full of shit!! It was actually sent to Doctors and other closeminded people(you),so they can actually see their so called wondrous treatments do.

[felixr29]

well thank god you are the only one with this disease. you can be the ambassador of pain since you are the only one in the world going through it because of this disease.

teach us oh great one

[ryanm189]

I understand your pain and suffering and wish you the best,...or at least moments of freedom. I'm sure you have heard from many people about Chiari surgery. Have you become aware of the Chiari Institute in New York? Dr. Milhorat can be found all over Google searches and is perhaps the most talked about and highly recommended Chiari doctor around. Perhaps this could help you??

[askafajahadonastick]

have you been assessed for the possibility of decompression surgery? watching your video, i remember my chiari 1 pre-surgery. so many drugs. so many weeks off school. and no way to explain it to anyone. and so many doctors pushing useless and expensive treatments for misdiagnoses.

[RainyMarch]

You look so young to have so many medical problems! I had a friend with Lupus long ago. Best wishes.