By Lucy on Monday, June 25, 2001 - 06:27 pm:

Could anyone please give me some advice? I live in the US and recently lost my job due to EDSIII -I am now undergoing the endless decision making of my disability insurance to see if they will "come through". In the meantime, I have no health insurance and no income. I've never been in this situation before. Can anyone advise me as to what options are available? I am running out of presriptions and haven't had any PT for months - feeling more than just a bit desperate - I look forward to hearing from you. Thanks - Lucy

By Mar on Tuesday, June 26, 2001 - 09:33 am:

Dear Lucy,

My sad but true experience in The Netherlands is that 'stalking' the involved authorities by phone is the only way to speed things up. Unfortunately a lot of employees at insurance companies and the government have the urge to put the difficult cases (and EDSIII is usually concidered one, as they don't have much experience with it, and not many, if any, precedents) on the bottom of the pile every time they come across it. I have seen this happen in a lot of cases, my disability, my electric disabled scooter, aproval to take a taxi to rehab, adjustments for college. EDS/HMS/BJHS scares the *** out of people cause they often don't even know what the abbreviation stands for and they don't really feel like looking into it, so the file is put aside until another time, which might not come for a long while.
As hard as it may be, the only way for me to get anywhere was calling, calling, calling.

"Hi, I was wondering how long it might take, cause I am running out of money, no ma'am, I'd like to hear an indication of a date please." "Hi, I was wondering when I would be able to get health insurance again, cause as you might know I have a poor health and my condition really needs PT in order not to get worse." "What seems to be the problem, sir? if you need more information I'd be more than happy to provide you with that."

Keep being polite, keep being correct but keep calling and keep asking. Eventually, and this is the purpose of the whole thing, they will get so annoyed by you calling and asking the whole time that they 'll decide to just handle your case. This is not 'cutting line' it is just claiming your place. Calling will encourage them to get thing moving. Either that or block your phonenumber. ;-p

Good Luck!

By Silvia on Wednesday, June 27, 2001 - 11:05 am:

Hi Lucy,

I'm sorry to hear that you don't have health insurance. Have you tried applying for social security benefits (medicaid/medicare)? Also, here's a website that offers medication at very low prices for those without insurance, I think it's $5.00 per prescription. It's www.themedicineprogram.com

As for the social security, maybe you should give that a try. I know a lady who suffered from terrible back pain and was also left without work/insurance. She applied for benefits and got them. But they gave them to her due to the depression she fell into after they had denied her initially. Basically, she got it for depression due to pain and the inability to work.

By Lucy on Thursday, June 28, 2001 - 08:26 am:

Thanks so much for your advice and support. I really appreciate it. I can't believe that EDSIII is so difficult for the insurance companies to deal with. Well, I'll get on the phone again and see what I can do. Keep your fingers crossed for me. Many thanks again - Lucy