Friday, October 15, 2010

Just a short post...

I'm still recovering from a huge clusterfuck (no other word for it) that involved me trying to get my Florinef refilled for an entire week. So for one whole week, no Florinef...those of you who have POTS know.

So, I spent the week tachy and exhausted, but I didn't stop my daily activities, just curtailed them. I stopped driving alone (too dangerous when your blood pressure could just abandon you at any moment.) But I've been too foggy to do much writing or talking or anything else that required my higher functions.

Today was the first day I had it back. First, there was no response from the pharmacy's attempt to get it refilled. Then I called and was told I had to have it filled by a different doctor since I'd been seen in a different area of the clinic.

OR SOME NONSENSE. My blood pressure was 85/55 and and I was really not grasping the finer points of her BS excuse.

So I called my primary care doctor and asked her to refill it. She said no, to have my neurologist refill it. I called back and said they were giving me the runaround. She said she didn't care, she wasn't filling it. Why, I don't know. You'd think I was trying to fill a Schedule II pain medicine over state lines for all the trouble she gave me.

Finally, early this week, the script went in. But I looked in the bottle and discovered pink football-shaped pills instead of round, white ones. I called Walgreens and said what happened to the Florinef manufactured by Global, because I'd tried these other ones and ended up with a nasty reaction.

Tough, they said. They weren't switching distributors on account of one patient and if I didn't like it, I could just switch pharmacies. So I did, to CVS. Two more days and finally...I got my medicine.

After this went down, I decided to call my primary up and see if my handicapped placard paperwork was ready to be picked up yet. Her secretary informed me the doctor had said, "I don't feel that patient needs a tag."

I said, "That's not what she said when I dropped the paperwork off!" At the time she'd reacted with some surprise but she still took it and said I'll have the secretary call you when it's ready. She did not say, I'll sit on this for three weeks until after you've had another doctor's appointment where you might have had this filled out, then reveal I never had any intention of filling it out.

I sat down and banged out and angry letter, then faxed it to her. It was too long to copy in its entirety, but here's an excerpt:

" know what? Forget it. If you've read all the reports you've gotten since you've been my doctor and you still don't understand why I might need a handicapped [placard]. I doubt I could explain it to you in a way that would change your mind."

I'm through with her. She can handle any incidences of strep throat and bronchitis I happen to come down with, since she's made it very clear she has no interest in learning even the most basic information about EDS.

And thus she is no help to me where I might need it most.

In other news around these parts. I'm looking ahead next month to finishing my remodel of my room. I've touched up the paint, hung curtains, painted my bookshelves, bought a dresser from the Salvation Army, arranged my books, cleaned out my closet of all unworn clothes and shoes (farewell, my beloved six inch platform heels) and bought new sheets for my bed.

I own the only full (double) sized bed in the house. My parents sleep in a queen and my little brother sleeps on a twin. I really want a nice big fluffy down comforter for the upcoming Midwestern winter, but they're so expensive!

Anyway, next month is an Ikea trip to get the rest of my furniture (desk chair, file cabinet and nightstand) and some incidentals (a vase, some picture frames, and probably some cheap items I don't really need but catch my eye anyway.)

There is also an EDS meeting in Pittburgh (where the nearest Ikea is) on the same day, so I figure I'll make an overnight trip of it.

And of course, on the 11th and the 12th is the Cleveland Clinic's Conference on Management of Hereditary Disorders of Connective Tissue. Information here. Registration is $50 for patients.

It's geared towards doctors, but I don't care. I was trained as a science/medical journalist in undergrad, so I understand medical jargon (and the jargon of many, many other sciences) quite well.

Of course, no one actually hires medical journalists anymore. They have a doctor as a correspondent if they can afford to (see CNN's Sanjay Gupta) or if not, ordinary journalists cover the story. This is why you see so many errors in medical articles, especially those written about rare and/or complicated conditions.


Chronic Geek said...

So sorry to hear about all that with the medicine and placard. :(

I hope you find a great comforter! I ended up breaking a lifetime rule and went to Macy's the day after Thanksgiving in 2008 and bought an amazing down alternative comforter that was only $20 (normally 150). I have never shopped on that day since, but it was worth it!

Em said...

my gp is much the same. a sore throat, chest infection, fine dish out the anti-bs. anything eds related its, 'erm i dont know where to send you for that'. i usually go prepared with dr, address of hospital etc. same over here im afraid. x

Yvette said...

Thanks Emma...and now that you mention it, I got one of the best comforters I ever owned during a spring sale. I'll keep an eye for comforters on sale during this years' Black Friday.

Yvette said...

Em, it's sad that this is a worldwide phenomenon. Good doctors are always the exception instead of the rule. A friend from school asked me what having EDS was like; I told her to put rheumatoid arthritis and multiple sclerosis in a blender, then pretend that no doctor anywhere gives a shit.