Wednesday, September 29, 2010

Stranger Things Have Happened

Longtime readers of ZPT are well aware of my problems with my clinic, particularly with the Rx Dick and the procedures involved with getting three of my prescriptions. For those readers, go ahead and skip to the red font. But if you're new here, here's some background:

Three of my prescriptions cannot be refilled like the others. All my other meds, I simply call or take in the bottle and get my prescription filled, or the pharmasist faxes my doctor's office and gets the refills authorized that way. But these three (Oxycodone, Methadone and Diazapam) don't work that way; the law requires a brand-new hard copy of the script every single month.

Getting this done has proven to be difficult. The office policy was for me to call 5-7 working days (not on weekends, this is prohibited on my pain management contract) and leave a message for the Rx Dick. The Rx Dick (in theory, mind you) would write up a note to the doctor requesting the meds. When that is sent to the doctor, the meds are now "pending." After the doctor approves them, the Rx Dick calls your home (again, in theory) to let you know that the scripts are waiting for you at the front desk. You then go to the office, get an envelope with your name on it, check the scripts to make sure they are correct, show your ID and sign for the scripts. Finally, you take it to the pharmacy to be filled.

Sound simple?

It's not.

I get my scripts on the first of the month. Rather, I'm supposed to get them, but this system has more holes than a collander. The majority of the time, when I call to leave the message for the Rx Dick, the voice mail is full. The receptionists refuse to take messages for him, and if you try to speak to your doctor's PA or nurse, they refer you back to the Rx Dick.

One of the reasons the voice mail gets clogged for days is that on top of being the prescription coordinator, he's also the clinic radiologist. If that sounds bizarre to you, you're not the only one.

When you do finally get the message sent, you are told it will take at least two days. This rarely happens. Whatever you do, though, you don't want to call and check up on the status until day three, because you will get chastised by anyone and everyone you speak to on the subject.

Finally, the Rx Dick rarely if ever calls you to tell you your scripts are waiting to be picked up, leaving you to call every morning and afternoon for days, even a week or more. The receptionists are often annoyed by these calls and by being forced to look on the computer to see if you're still "pending" or if they are at the desk waiting for you. You can leave a message on the Rx Dick's voice mail, but even if it isn't full he's very unlikely to call back.

When there is a holdup, the Rx Dick will not contact you to let you know what's going on. The receptionists will not be told, so they have no information to give you. Your doctor and their PAs and nurses have nothing to do with the presciption refills process, so there's no point in enlisting their help (they will just refer you back to the Rx Dick anyway).

I go through this every month. At least, I used to.

A few months ago, the office changed their policy. There is no more Rx Dick (he's still there, as radiologist). Now, you must call the receptionist 3-5 working days ahead and have THEM send the "note" to the doctors. And then again, you call and you call, hoping that your meds are ready for you before you run out (and run out I have, more than once).

Now when I call, I have to explain to the receptionist why their immediate response of, "Just have your pharmacy fax the request to the office" won't work. The law requires my having a hard copy every time. This annoys many of them. All you can do is cross your fingers and hope they send up a "note" in a speedy manner with the right meds requested.

Yesterday, I made the dreaded phone call. I had tried the day before, only to have the annoyed receptionist snap at me and tell me that it "isn't three days prior yet." Gee, I'd been told 3-5 days, but whatever. I made the call yesterday, and prepared to go over the whole rigamorale all over again.

The phone call went like this:


ME: Hi, my name is Angel, and I need to make a request for three hard copy prescription refills.(bracing myself to have to explain)

RECEPTIONIST: Oh, yes, I see in your chart! By the way, my name is "Norene", and I'm the new office manager. Would you mind staying on the line while I write and send the note?

ME: (surprised) Yes, of course.

NORENE: (over the sound of the computer typing) Request for these three prescriptions, request that attending sign if prescribing doctor is unable, send. There! All ready.

ME: (shocked at the added request, as I usually have to beg and plead for that eventuality) Thank you so much.

NORENE: Now, could you do something for me? Could you call tomorrow and check on the status, make sure it's moving along so they'll be ready for you to pick up Friday?

ME: (completely, utterly stunned, as making such a call in the past led me to be lectured, snubbed or oraly bitchslapped) Sure, I can do that. No problem. Thank you so much!

NORENE: Well, thank you. And if you have any problems, you just ask for me, Norene. OK?

ME: (not sure I'm awake, as this must be a dream) OK. Thank you again.

NORENE: Have a nice day!

ME: You, too.

I hung up the phone and stared at it. Did that just happen?

Has the Rx Dick been replaced in my life by Nice Norene?

I have no idea what will happen when I call today. Lecture? Rudeness? Or more Nice Norene?

I'll keep you posted...

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Sunday, September 26, 2010

Ah, Pain & Insomnia: The Bitches Are Back

I'm not sure why, but the trigeminal neuralgia has been unusually ballbreaking this past week. These bouts used to be common before the methadone, but I've only had a handful of them since. I'm pretty proud of the fact that I haven't had to go to the ER for TN pain alone for almost four years.

The methadone has been such a blessing in my life. Before, I was hardly living. All day, every day, was constant, excrutiating pain. I understand torture, how it wears you down physically and emotionally. I lived it. And I don't want to go back.

Maybe it's time I increased my Oxycodone for breakthrough pain. I haven't slept more than four hours in the past two days, and there doesn't seem to be an end in sight. I haven't had to increase my Oxycodone in almost six years. I'm very wary of my tolerance level and of increasing my pain meds, but I can't bear the idea of my life going back to the way things used to be. Maybe I'm being over-cautious. It took me six years for the Vicoden to stop working and for me to have to step it up to Extra-Strengths, and then to Oxycodone. Maybe six is the magic number in my tolerance. I hope not; the reason I'm wary is that there are only so many pain options out there. I'm only 36, and I'll be on pain meds for the rest of my life. If I go through my options too fast, I'll be left out of options. And that is a concept not even worth considering.

And then there is the possibility that all this is just the usual changing-of-the-seasons MS calvacade of crap, and if I just hold on for a few weeks, it will pass.

And so I come to a decision: if I'm still having this much trouble one month from today, I'll make an appointment and discuss this with my doctor. Perhaps I need to go to a pain management clinic now, maybe there are other options I don't even know about. And I won't know, until I ask.

One month...

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Sunday, September 12, 2010

FAQs: General

I’ve been a blogger for some years now, as well as being active on message boards, support groups, Myspace, Facebook and Twitter. And as a result, I find myself answering some of the same questions over and over again.

So I’m putting out a personal Frequently Answered Questions list; two, actually: one in general, and one for multiple
sclerosis and trigeminal neuralgia.

The latter will undoubtedly be the longer of the two, as I am very often asked about MS in general and my MS specifically. It requires a lot of long answers, important details and weblinks. It’s one of the most rewarding aspects of the Zen Pretzel Trick: people who are new to MS, or love someone who is, seeking help about this often misunderstood disease and turning to me for it. I am always more than happy to answer those questions, knowing all too well the sense of urgency and the feelings of confusion and panic that are the hallmarks of the newly-diagnosed. I am forever grateful to those wonderful web folk who helped
me out during my tumultuous first year, and I feel a deep sense of obligation to pay it forward. It’s occurred to me on several occasions that having an FAQ list would be so much more helpful than my making a number of emails and hoping I got all the information in them.

And because that FAQ is destined to be the longer, more detailed one…I’m starting with the general questions first. If you have a question for me you don’t see on here, leave a comment and I’ll be sure to add it to the list. I will also add to the list as needed. Note: some of the questions here aren’t really ones I’ve been asked before; they’re just added for fun. What can I say, I’m bored.




Q: Why do you call yourself “Zen Angel”?
There are 3 Angels in my support group, so we gave out nicknames to make life easier.
Q: Where did you get the name for your blog?
The Zen Pretzel Trick is a pseudo-martial arts "move" that appears in one of the Star Wreck books by Leah Rewolinski, a Star Trek parody series. It involves a character based on Sulu, who can knock down a stack of pretzels with pure concentration and a sharp move alone. I am a Star Trek & a Star Wreck fan, and because of my MS, I know all about concentrating very hard before attempting to do things that may seem easy to others but take “tricks” for me to accomplish. Voila!
Q: Why are there no photos of you on the blog, or in your avatar?
I have a stalker, whom I have written about before on this blog (click here). Also, I prefer to be
able to tell people I’m sick first and let them get used to the idea before letting them see me. It lessens the shock and makes it easier for everyone involved.
Q: What should I do if your stalker contacts me?
Copy & paste the correspondence, and email me the file at I will then contact the proper authorities; I have a restraining order and it is illegal for him to try to use others to contact me or anyone in my household. If he continues to contact you and is menacing you, contact the authorities in your area.
Q: You write a lot of posts about Native Americans. Are you Native?
Yes. My father’s side is Eastern Cherokee. My mother’s side is Irish.
Q: What made you start this blog?
I began this blog as a way to vent and to educate others on MS and related issues. It’s also a great way to pass the time when you’re up all night in pain. I highly recommend it.
Q: Why haven’t you been updating your other blog, Bad Baby Names?
Ever since my MS went progressive, I have found myself in a situation where I don’t have as much Internet time as I used to, or as much healthy time to write and research as I once did. I am considering taking BBN to an actual website (not a blog) sometime this winter or next spring. It’s still an idea I am toying with.
Q: Why are there sometimes long absences between posts?
MS is a bitch.
Q: I’ve seen you refer to the “Arthurian” book you’re working on. What does “Arthurian” mean?
Anything related to the Matter of Britain, otherwise known as the King Arthur legends.
Q: I’ve seen a lot of photos of your tattoos. How many do you have?
14, presently. I never get tattoos in the summertime if I can help it (MS being a bigger bitch in the summer than in all the other seasons combined), so I get my “birthday ink” late. I plan to get 2 more in the next few months, as well as my usual Valentine’s and Mother’s Day tattoos.
Q: Who does your ink?
Mostly Sean at Captain Jack’s. I also occasionally use Mav Mess at Deluxe Ink. Both are here in Portland.
Q: Are you into piercing, too?
Not really. I have 6 earrings in my left ear & 2 in my right. I’ve also had my nose pierced for21 years. I might get a few more earrings done, but I’m not interested in any more body piercing.
Q: Are you single or looking?
Neither. I’m very married. This means I’m not interested in cyber sex, thanks anyway. I’ve never really seen the point of it, and I don’t want to have it explained to me, either. I am not interested.
Q: How many kids do you have? Do you want more?
I have three kids, and a tubal ligation.
Q: What is your religion? I’m confused because you seem to celebrate Chanukah and Christmas.
I am a Christian, my husband is Jewish. We celebrate both sets of holidays in our home.
Q: Are you a Democrat?
No. I’m an Independent, always have been. I take voting quite seriously. I look at it like hiring someone for a job: do they have the education, the experience, the skills? I have voted for Democrats, Republicans and even third parties like the Green Party. I have never voted anything but Democrat for President, however.
Q: Are you a liberal?
Yes. Although fiscally, I’m more of a moderate.
Q: Do you live on a reservation? Don’t you have to live on one?
No. I live in Portland. I can live anywhere I choose. (You’d be surprised how often I get this question.)
Q: Did the DMV thing really happen?
Yes, it did. And it didn’t seem at all funny while it was happening, I assure you.
Q: Will you help me find my Cherokee roots? I’m pretty sure my great-grandmother
was a Cherokee princess.
No, she wasn’t. There’s no such thing. Princes and princesses are a European concept, not a Native American one (read all about the myth of the Cherokee princess on this great site). That’s not to say you don’t have Native blood. The first thing you’ll want to do is find out Granny’s full name, including her maiden name, and check the Dawes Rolls. If you strike out there, I recommend finding a good geneologist. That’s not my profession, so I can’t help you out, but there are many good people who can. Good luck, and stop telling people your ancestor was a Cherokee princess. It irritates the hell out of Natives, and makes you look like a fool.
Q: Can you help me get benefits and free college and stuff?
If a complete stranger walked up to you tomorrow and said, “Hi, you don’t know me, but
my grandmother was an American. I just got here myself, and I’m not really sure I can prove Granny was an American, but everyone in my family swears she was a President‘s daughter. Can you help me get welfare, food stamps and Section 8?” What would your response be? Yeah, well, that’s how we feel, too.
Q: Do you consider yourself a feminist?
Yes. The kind that thinks a woman’s choice to stay home with her kids is just as valid and should be just as supported as her choice to join the workforce. And if she does the latter, she should get paid the same amount as her male counterparts.
Q: Did you ever find your missing friend, Danell Lewis?
No. It pains me more than I can ever hope to express, but I am still looking.
Q: Why do you home school?
It’s what works for our family. I am not one of those people who believes that public school
is bad or evil or what have you. I think public (and private) school works great for some families, and home schooling works great for others. It’s a matter of what is right for your kids, and what’s right for your kids isn’t always going to be what’s right for everyone’s kids.
Q: Do you have any pets?
We have one cat, Woody.
Q: What are your pet peeves?
People who use the words “retard” and “retarded” as insults. People who do not control their kids in public and allow them to completely act like little monsters with no consequences. People who believe that because their way works for them it must therefore be the only right way for every person on planet Earth.
Q: Why did you move to Portland?
Dayton sucks. This is my personal opinion, hate it if you must, but you won’t change my
mind on the issue. Ever since I was in junior high, I wanted to get out of Ohio. I went as far
as I could without hitting an ocean and never looked back. I LOVE it here. I never belonged in Dayton. I belong here. That is a precious thing, not to be taken lightly. I can’t imagine myself ever moving back.
Q: What is that icon you use on Facebook, the thing with the two circles?
That’s the Chalice Well, in Glastonbury Abbey, Glastonbury, England. Legend says the Holy Grail is located inside it. Legend also connects Glastonbury with the isle of Avalon, and thus with King Arthur. It is also said the Abbey was the site of the grave of Arthur and Guinevere. I have the Chalice Well tattooed on my arm (courtesy of Mav Mess of Deluxe Tattoo in SE Portland).
Q: What is “Tin God Syndrome”? I’ve seen it in several posts.
Tin God Syndrome is a term I use for medical professionals who believe they can do no wrong while actively doing everything they can wrong. There are various forms of it; look up the tag for it on my blog and you’ll see numerous accounts.
Q: What do you look like?
I'm 5'7, a bigger gal with brown eyes, long hair that is shaved around (a traditional mohawk) with bangs. The bangs are pink, the rest is black. I have brown eyes, pale skin, a nose ring & 14 tattoos. That about covers it.
Q: How can I reach you by email?
Q: Are you on Twitter?
Of course! You can find me @ZenAngelSinger. I give regular #MSUpdates there.
Anything I left out? Leave it in the comments!