im so tired of fighting issurance
 

I am chronically ill and physically disabled (even if it's a more manageable type, I'm still disabled) and I know that the way I look is part of what makes doctors hesitant to help. I've recently gotten a few doctors to believe me and start trying to help.

I drove a little over an hour to talk to a neurologist, and she put me on one medication. it didn't work. I waited 3 months and drove over an hour again. She tells me that she can't prescribe the medication she wants to prescribe me because of insurance issues. she has to put me on a different type of medication that may or may not work, and I have to be on that for at least a month to see if it works at all.

I know that all of this means I'm getting help, but it's so overwhelming. My medications change so fast, I take more meds in the morning than my grandmother and that's still missing 80% of my issues. it's starting to set in that all of this is real, that I'm not just overreacting, or making it up. I have genuine issues, I'm in and out of hospitals instead of going to class or hanging out with my friends. I'm losing (or have already lost) my teen years and childhood to either trauma, financial hardships, or medical conditions.

I just want to be able to manage my pain, but I have to battle insurance companies to keep myself alive. I am tired. I don't understand why I have to fight so hard and wait so long to just not be in pain.

Oh goodness, that sounds so frustrating to know that there's a better treatment but it's not accessible because of your insurance! I hope you are able to find a way to access it. I wonder if there's a charity set up for your condition and if they would have any advice for you on ways to best access the treatment you need?

hEDS is surprisingly common but really under diagnosed so no charities will extend to minors (as far as I'm aware) so they wouldn't be able to help until I turn 18 which is months away. I do have an MRI in a few days, so that should make it a little easier to talk to insurance.

I hope the MRI went OK and that that does indeed make things a bit easier for insurance.

Have you heard of the Zebra Network? It seems to be aimed at people with EDS of all ages.

the MRI hasn't happened yet, it's been pushed back nearly a month now. originally because of the weather, then the machine went down, and it's so tiring waiting and preparing and pushing everything back over and over again. it's supposed to be the 29th now.

I have not heard of the zebra network, do they have a specific social media page or website?

Oh goodness how unlucky that it keeps getting delayed! I hope there’s no further delay and it goes ahead on the 29th!

http://thezebranetwork.org/#

Looks like they’re on the instagram too, @thezebranetwork

I haven’t looked into it that much, so hope it’s all legit!!