Just a fair warning - this may be a little long. I will be as abbreviated as I can, but please bear with me.

So, as you will read in some of my first few posts, I think I have vascular EDS. But the kicker is that I don't qualify for any kind of health insurance at all. In the U.S., (where I am), we get health insurance through work. Well, I'm too sick to work (I know this from experience), so that idea is out. I have tried many times to apply for Medicaid (government assistance), but you have to either be on disability or pregnant. So that idea is out. I have tried applying for disability, but I can't get it without a diagnosis. The President recently passsed the Affordable Care Act, which was supposed to give everyone access to affordable health insurance. But A) It used tax subsidies to give people discounts on their health insurance. If you can't work, you can't pay taxes, and you can't get the discount. B) My state (GA) chose not to expand Medicaid so that more people could qualify for it. So that's not an option either. And aside from that, I have bent over backwards to try absolutely EVERYTHING. I have called every clinic, hospital, and lawyer. I have emailed every government entity and talk show host. I even saved up money from birthdays, Christmas, and small odd jobs and paid for a month of health insurance on my own and went to a specialized hospital. The hospital only had one appointment opening during that time, and I did not get a diagnosis. I have tried absolutely EVERYTHING. And every single attempt has failed miserably. I have fallen through the cracks every single time, and that saddens me.

Then i heard about CrowdMed.com. It is basically a website that helps you create an online medical case, and people from all over the world (usually medical professionals) suggest diagnoses. They all vote on them, and the most likely diagnosis wins money. You then take the results to your doctor, who can then confirm the diagnosis. It's actual live people, not keyword searches. So anyway, I did that, and they confirmed my suspicions of EDS. But then there is the issue of getting the diagnostic suggestions confirmed. As someone who doesn't qualify for any kind of health insurance, that's next to impossible.

But a month or two later, I found a doctor's office that offers discount fees for those who qualify. One flat rate for the visit, texts, exams, etc. I have only ever found (and been accepted into) one other program like that one other time in my entire life.

So during the first two appointments, I saw the nurse practitioner both times. I was a compliant, pleasant patient. I came prepared with all my past medical records and the CrowdMed results. The first appointment was a mandatory baseline assessment that measured your nutrition and overall health. Fine, I will shut up and deal with that. When she asked me why I was there, I calmly explained about the EDS and the health insurance. She made a face and said, "I ain't never heard of that." But everything just kind of concluded from there. I got my blood drawn, and the appointment was over.

During the second appointment, I saw the same nurse practitioner. I answered all her questions and did everything she wanted me to do. When it came time to talk about the EDS, I explained everything again - the EDS, the lack of health insurance, all of it - a second time. But she didn't really listen. he just said things like, "I've never heard of that disease," and "We're just a family practice. We can't help you here," and "You need to see a specialist." I feel like she didn't hear me at all. But she reluctantly agreed to schedule an appointment with the doctor. That appointment is in June.

Meanwhile, I found out about a program from Rare Genomics Institute called the Amplify Hope Initiative. I had been in contact with RGI twice before, because I had looked into exome sequencing as a way to get diagnosed. But it wasn't an option because I need A) At least 6 months of health insurance, or B) $3,500.

But I found out about the Amplify Hope initiative, where they help you use crowdsourcing to help raise the money to pay for exome sequencing. I jumped through all the hoops and submitted the application ASAP. In order for this to work, three things need to occur:

1. I'd have to get into the program.
2. The program would have to successfully raise the entire $3,500.
3. The exome sequencing would have to locate the mutation.

It was a long shot, but I have to explore every possibility, no matter how remote. So a few days, later, I get this email from an RGI employee, basically telling me 'welcome to the program,' and 'we'll send you the program materials soon,' etc. So I thought, awesome. After 10 years of trying, this might just happen. I was cautiously hopeful.

Then, the next day, I get an email that, in part, says:

"In order to be apart of this study where you will raise funds to pay for exome sequencing, you need a physician that believes you need the testing and will submit the necessary paperwork asking for the test to be done."

I mean, maybe this information is common knowledge to some, but it completely let the wind out of my sails. I thought the whole point of a medical study was to give patients access to medical options they may not have had before? Maybe I should have known or whatever, but it completely blindsided me. I feel like I came >thisclose< only to hit a wall once again. As always.

So I responded immediately, with a very, very long email, explaining EVERYTHING. I started off by explaining how this whole mess started, went through all my attempts to help myself and gain access to complex healthcare, and explained why I haven't been able to get a doctor to ask for an exome sequencing as of yet. I basically left no stone unturned. By the time I saw her email, though, the woman had already gone home for the day, so I had to wait all weekend so that I could hopefully hear from her later today.

So my question is this . . . what can I do in the mean time to convince my doctor to submit this stupid paperwork? This will be the first appointment I have with him, and the deadline for this program is creeping ever-closer every day. I thought about writing him a really long letter or something, but I don't know if it's going to do any good. I am quickly losing the ability to cope with all of this. It's been 10 years. I'm tired, and I want to stop. I just want my diagnosis so I can start my life over.

To those of you who actually read every word of that, thank you. And thank you to anyone who is kind, understanding, non-judgmental, and helpful.