What a combination of Chiari 1 Malf and Lupus Looks like

This is what I look like after treatment

Category:

Science & Technology

Tags:

• Chiari
• Malformation
• and
• Lupus

[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.

[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.

[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!

[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.

[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

[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, :)

[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?

[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!

[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!

[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!

[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?

[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:)