This is only a small snippet my 10-year diagnosis journey. It's obscenely long and complicated, so bear with me.

So as you all may or may not know, I suspect that I have vascular Ehlers-Danlos Syndrome. I am also undiagnosed and too sick to work, so I have not had in income since 2008. And without a diagnosis, I also do not qualify for (nor can I afford) health insurance or disability of any kind. And since my state chose not to expand Medicaid, I'm really up the creek.

So about 4 months ago, through my own research, I found out that a specialized skin biopsy can test for the presence of the disease. But my doctor is not a specialist, and thus needed specific and detailed instructions for this very unique test, which would have to be mailed to the opposite end of the United States. So I called the lab, and they faxed the instructions to my doctor. Well, for those 4 months, my doctor's office couldn't find the fax. At one point, when I called and spoke to a nurse named Britney, I found out that they said they did get the fax, but they actually were looking at the wrong document. The doctor's office said they didn't get it, but the lab said they'd already sent it.

So I finally called the lab again, and this time they tell me that the skin biopsy is an obsolete test, and labs actually use the COL3A1 test instead. 4 months of work, down the drain. The first step, she said, is to see a genetic counselor. So I found one in my city. I called, and a nurse named Amy answered. Amy said it will cost $500 for a 40-minute session, and I am uninsured and unemployed. But if I call a woman named Rose, I can get that fee waived.

So for three weeks, I called Rose. After three or four phone calls and a voice mail, I gave up and emailed Amy again. Amy emailed Rose, who finally called me back. She took down my information. She only needed one document, which I emailed to her. Then, she told me that the genetic counselor near me does not see patients with connective tissue disorders. Only Emory's genetic counselor in Atlanta sees connective tissue cases. That would be two hours one way, two hours back, plus time spent in the waiting room and with the genetic counselor. Probably two tanks of gas, and probably $40. Plus lunch, because it's going to be an all-day affair. So I began to figure out how I was going to accomplish all of that when I can't drive.

Then I had a thought. Rose can help me get the fee waived for the local genetic counselor, but can she do the same for the genetic counselor in Atlanta? So I emailed Rose to find out.

But I never got an email back, so I called Emory myself. I found the phone number in one of Rose's old emails. I explained my situation, and she told me that they only offer a 20% discount. She offered to connect me to someone who would be able to tell me how much that would ultimately cost.

The person she connected me to is named Randy. After explaining my situation again, Randy told me the same - that they only offer a 20% discount. That amounts to around $1,600 for a SINGLE blood test. Normally, the COL3A1 test comes as part of a $3,000 panel, but he was willing to offer a custom single order. He was also willing to let me skip the meeting with the genetic counselor, further saving everyone additional resources. He gave me his contact number, and we decided that I would email Britney again and re-explain everything, starting from the beginning, and telling her to contact both me and Randy. So I did.

The next morning, I started checking my email obsessively starting at about 9:30 that morning. At around 3, I couldn't wait any longer, and called Britney. And God bless her, she had already looked into everything. She read through the entire email. She added the paperwork to my file. She contacted Randy from Emory. So that was really perfect. The kicker? Emory requires the full cost of the test UP FRONT. There is no "bill me later," and there is no "cross that bridge when I get to it." And even with the 20% uninsured discount, that's still, as you will recall, $1,600. And my doctor did say he'd order any test up to $2,000, but that was with a specific lab. LabCorps, it might've been.

So then I remembered GeneDx, and remembered that they have a financial assistance policy. So I called to ask about that. They have an entire panel that includes the COL3A1 test, and uninsured patients get the Compassion Price of $1,500. They only ask for half up front, but that's still $750. But it's an entire panel, not just one test, so it would cover a wider range of diagnostic possibilities. So I emailed Britney again to update her with all the information.

But I still wasn't done. I then emailed the medical liaison for U.R. Our Hope, a non-profit that helps undiagnosed patients. I told her what was going on, and as luck would have it, she has a UROH board meeting tonight. She is going to try to get UROH to help pay for the test if GeneDx can bring down the cost a bit. Mary then told me to call Katie, a regional manager for GeneDx. So I called Katie, and explained everything, and she is going to talk to an associate named David to see what she can accomplish. Katie also wants to speak with Mary in order to start negotiating. So Mary is working on it, and Katie is working on it, and Britney is working on it, and we might just be able to do this.

Things may have finally taken a slight turn in the right direction . . . after 10 years of near-bankruptcy and near-homelessness. Stay tuned for more updates.

Phew.