The primary care, a title he earned through the path of least resistance, abruptly left the practice in December. There was no notice, and I found out quite by accident. But, none of that surprised me. Very little surprises me anymore.
After 12 years of a formal diagnosis, and a whole lot more than that at too many doctors all the time I just shake my head.
Don’t let it define you they say. Except it takes so much time. All the time.
We need someone to check the boxes. In theory anyway. We need someone with a license to order the diagnostics so we can avoid a few specialists. This PTEN team is often left without a captain. I sometimes feel like I am playing all nine positions at once, and the irony that I cannot throw or catch is not lost on me.
I’ve been on the phone for 2.5 hours trying to get a refill on a medication that my college-age, currently out-of-state girl has been taking for years.
The pharmacy can’t fill it without a doctor. I get it. I called the office (HIPAA on file is my lead in… all the time) and they can’t fill it until she sees someone. The last refill was in November. She’s not due home until the 7th of March. I offered to make the appointment and asked them to review her chart and authorize it in good faith.
No. And that was a hard no. A conversation ending block from a medical assistant who undoubtedly is following rules. But the rules are made for situations that fit in boxes. We pretty much live in the basket of the shredder. There are no definable boxes anywhere in our lives.
So, I made the appointment for March 7th for the two of us. Her medication will have lapsed by then. And when it is called in I will end up paying an extra $30 to expedite it. It’s not about the money really. It is that that fee is for people who wait until the last minute. I don’t.
We will go on March 7th together. I already met this doctor at my husband’s appointment to transfer primary care. I asked her if she was willing to take on two patients with PTEN. She looked a bit like a deer in headlights but reluctantly agreed.
I was online this morning trying to print out a guide for physicians who have no idea what our disorder is while trying not to be frustrated that we are once again caught up in the red tape of a system that requires the two of us to see ANOTHER MD who has NO IDEA what we need, so we can tell them what we need, so they can make us jump through more hoops to get it.
I’m grumpy.
I get that the rules have to exist, for the 90 percent of us without rare diseases. And, somewhere I understand why the other 10 percent of us have to suffer.
But, just because I understand it doesn’t mean I like it.
There has to be a better way.
And when I searched I found this site… https://www.ptenresearch.org/for-families-living-with-phts/additional-resources-and-information/useful-links/ Which ironically includes a link back to this blog. Which is both flattering and mind-blowing to me. I can’t do anything besides commiserate!
Fortunately, the PTEN Foundation came through again and I found this on their website.
But I am definitely suffering from fatigue while
#beatingcowdens
beatingcowdens 