Trending Downward

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I had a shaky day post-meltdown, which is to be expected. Great energy was expended, problems were not solved, resultant sense of fragility must be nursed through the day. I got some drawing done, started on the process of tapering off the Propanolol, and even allowed myself to sit on the couch and look at pretty books (this one and this one) and worked a bit on a remake of a dress for an upcoming local production of Passion. I reached out to a couple of friends about where I was at–this is really hard for me because of my self-imposed requirement that I be perfect and never, ever voice complaints. One of them actually said that, “I forget that you have this issue because you never complain.” That is a good summation of two sides of the coin that I have set up. I have some really big and serious going on, I never allow myself to complain. I told her that I live in fear of being one of those people who drags everyone down with their constant litany of sadnesses and infirmities.

This same friend’s husband has a sister who is a Rheumatologist in another city. I called in May and was given the next available new patient appointment, which is on September 4. I’ve held out some hope that this person will be a lifeline for me, that she might be willing to help me manage my care and might be able to refer me to a better cadre of specialists in her area. I will drive for three hours one way to get good care, that’s how inadequate the care here has become. However, when I made the appointment, they mentioned that she is not in my insurance network, BUT that the insurance would often pay since I was traveling to see her.

I am not naive. Along with the hope I’ve clung to, I’ve known that my insurance paying because she was out of town was a fairy tale. Yesterday I sat down to sort that out. That is the same as saying I sat down to go on ahead and break my own heart. The insurance confirmed that she is not in network. They offered the possibility that I could get a “PPO Waiver” if it could be demonstrated that she was the only person who could treat me, and no other in-network doctor could do so. So I called the doctor’s office back. They confirmed that they do treat EDS patients, but I would have to talk to billing about a waiver. Billing politely told me that an out of network visit would be $95 at the door, and a resultant $300-500 bill later. They wanted me to have my insurance contact THEM about the waiver–a concept that the lady I talked to had never heard of.

So I called the pre-authorization number my insurance gave me. I explained the situation. They said that they would start a case, and investigate if there really wasn’t anyone in network who could provide care (at this point, honestly, I considered hanging up and building a blanket nest and not coming out for three days–I know tilting at windmills when I see it). They also wanted me to then provide this phone number and fax number to the doctor so she could send clinical details to them. Um, wait, I said, I’ve never seen this doctor. She can’t send clinical details to you.

With a clanging of funeral bells, they said then my PCP would have to do that. I could hear Monty Python’s “Bring Outcher Dead” in my head, and there was no reason to argue the point as I’d certainly be dead soon enough, might as well lay down on the cart. I called my PCP’s office. I had the (not) pleasure of speaking not to Beehive, the receptionist, but Incompetent L., my PCP’s assistant. I explained the situation to her. She said, “Well, he’s only here half a day on Fridays.” She tells me this every time I call on a Friday, like it’s a national holiday and I have violated protocol. “Also,” she went on, “He’s on vacation next week.” Okay, I said, well, my appointment is on September 04, and I’ll need time to cancel it if this doesn’t work.

First, she doesn’t even understand what I am asking, and even more will be lost in translation when she gives the message to him. Second, he has referred me to this doctor because I asked him to, not because he found someone he thought would help. Third, he’s a fucking chiropractor with a nurse practitioner’s license, and the only weight that will give his opinion is that clearly HE is not the right person to treat me, but there will be long lists of others that my insurance will say can do so. What Rheumatologist won’t say yes when asked if they want to get paid to see me? And how detrimental are most Rheumatologists to people with EDS? VERY. Very detrimental. It was the personal connection to this one that might have been a game-changer, but now I will never know.

I don’t know how many final straws there are, or how many death blows one must be dealt before giving in, lying down and accepting defeat. I’m close. I long to fire my PCP but I can’t because then there would be nothing. Yet, he is doing me so little good at this point, he has made big mistakes with my care, and I can tell he is tired of not being able to fix me. It is warped that I care at all about his ego and the challenges of caring for a patient like me because guess what? It’s worse to be the patient in this scenario than the care provider.

I found I had not run out of tears, not by a long shot. There are plenty left in the tank.

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2 responses »

  1. First off, your writing is fabulous! Your frustration in navigating life with EDS hits so close to home. Your views and stories about your experiences are making me laugh and cry. I, on my winding little road, have decided that the medical professionals will kill me if I let them. I have let them inject foreign substances into my joints which did not help and sometimes made things excruciatingly worse. I have let them put me on beta blockers and calcium blockers which made me feel like I really was about to die. I have NOT let them fuse my spine or my thumbs. I did let them repair my rectal prolapse after being promised that they would use 10x the number of sutures than they normally do. A gynecologist did that surgery and as he knew I had to have 3 tubal Ligations as the first 2 failed and I ended up with ectopic pregnancies, I assume he figured a little extra sewing was in order. Anyway, although my heart scares and worries me and my skeleton is constantly in a war of destruction and repair, I know I will not find help from the good doctors. I dutifully go to the rheumatologist every 6 months so I can keep my supply of pain meds and that is it. There is no cure for me and no need for me to seek help that I will not find. I will turn 55 on 10/16 and I will retire on 11/1. I should really be able to go out on disability, but that option is not available to me. When I asked a doctor about the possibility, he advised it was a legal issue and not a medical issue. So the fact that I am in constant pain and struggle to get through each day so much so that I am going to commit financial suicide is just another favor that EDS has bestowed upon me. The whole mess can be too much to bear at times but hey it could always be worse.

    Liked by 1 person

  2. I’m so glad that you enjoy my writing and feel some connection. It’s good to know that we are not alone, even when we feel we are. I am sorry that you have to retire and that you can’t get disability. EDS is a harsh sentence, and we have to be our own doctors a lot of the time because, as you said, the medical world often doesn’t have any idea how to help and, too often, makes things worse. We are pioneers in our field, we really are–and that’s a big job to have on top of everything else.

    Like

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