TN sufferers should have our own laws/ exceptions!

Archive Blogs (Read Only)
1

Ok. I didn't know how exactly to word the title.

But I wanted to talk about Law concerning people with TN and painful diseases. I don't know anything about anything so I don't know if there is help out there for us.

Is there exemptions for us out there? We TN and the like should be given welfare and monetary support from our Government.

We shouldn't have the extra stress of being called to Jury Duty. It is down right cruel !

Is there a program that delivers your groceries when you can't get out? I'm lucky for now, I live with my dad he's 74 he's not going to live forever. What will become of me and people like me/us? No job, no money, no husband/boyfriend, no family.

Will we be lost in society, homeless bums, made insane by pain trying to commit suicide?

What are the laws out there ? Do we have any to our benefit? What is out there ? More people should know about our disease, it's not like some that there's hope of beating their disease. There's really no hope at all, at least none that I have heard of.

If It is the MOST painful disease why isn't TN a house hold word like AIDS, Cancer,Diabetes, ETC... Just because we don't die from this doesn't mean we don't wish we were dead. In a sense our lives are over.

Is anybody even looking for a cure for us ? What color is our ribbon ? The color of pain...

Where is our movement ? Where is our help ? Don't we deserve it ?

2

Hi Adel, maybe ask your doctor about services available in your community?
This website has the info on current research they are doing for a cure for TN.
http://www.facingfacialpain.org
This website was started last year…power of all of us spreading awareness, creating our own Day, etc
http://www.tnnme.com
Our first International TN awareness day was October 7th, 2013
The colour of the ribbon is teal, I ordered some from the tnnme website last Fall.

(( hugs )) Mimi

3

Hi Adel,

If you click on the "Face Pain Info" tab and go to the "About Disability" section it gives you a lot of information about applying for Social Security Disability benefits. You have to have enough work credits and your doctor's support to start with. You can also go to the SS website and create an account to get an estimate on how much your benefits would be if you were approved. I am worried that I will not be able to continue working and am a single mom so this is something that is a very scary situation for me. I have seen some people say that after you are on SSDI for two years you can get Medicaid health coverage also. I hope this helps and i'm sorry you are going through this too. -Laura