I had posted this awhile back about Ashley
There is no cure, not enough awareness or research
It's actually known as The Suicide Disease
I belong to many support groups and you would not believe how many moms, dads, teens, people!e in their 20's and 30's who have taken their lives because they just couldn't take the pain anymore
Pain meds just shave a little of the pain off, they really don't help because it's a different pain pathway with this disease
Ashley has been in a very bad flair right now , nothing is helping
It's the most painful disease in medical history
Right now from her neck up, eyes, jaw, teeth, face , temples and ears are killing her
All the nerves are going crazy
I'm sitting here and so angry she has to go through this
Can't leave the house because all noise sets off the pain
Can't escape noise
Even listening to her own voice causes pain.
So we can't have any company over at all
Only leaves the house for blood work
When people cut grass , leaf blowers , snow blower we have to leave the house because the noise just kills her, oh I am dreading the 4th of July ,we have to leave the house for a couple of hours and go park some where until everyone is done with the dam fireworks .
Usually park in another town where I know no one is having fireworks. Maybe a parking lot that's at a hotel or a shopping center
It just sucks !
No way to live, and nothing to look forward to
All she has been saying to me Is why am I still here , why am I still hanging on
Makes me sick to my stomach that my daughter has to go through this
Sorry for the long post about Ashley
@Mikanmama