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:



RECEPTIONIST: Hello?

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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Friday, December 08, 2006

Update

I've been MIA the last week or so....but with good reason.

About a week and a half ago, I began experiencing this very weird pain. It was in two different places in my abdomen. I couldn't figure out what was wrong. Within a few days, I had completely lost my appetite and was dealing with increased nausea and severe fatigue. I made a doctor's appointment, but before I could go in, the pain became very severe and I ended up in the ER.

I am very happy to report absolutely NO problems with this ER visit! The nurse was incredible, checking on me at least every 10 minutes, the resident and the attending were both great doctors who treated me with the upmost care....not a Tin God in sight. I was given pain relief WITHOUT having to either ask or beg for it. My concerns were taken seriously and my questioned answered promptly. I was treated both with care and respect. I have written letters of complaint to the hospital in the past for poor treatment, and it was a great joy to write instead a letter of appreciation.

But, back to the issue at hand. At first, appendicitis was suspected, which frightened me. I am no big fan of surgery. After that was ruled out, the doctor was perplexed. It seemed like another case of kidney stones, but it also seemed like another case of ovarian cysts. After much testing it was determined to be BOTH.

I've had kidney stones, and I've had ovarian cysts. Never have I had them both at the same time. Trust me on this...it's not an experience I wish to repeat. Despite my extreme dislike of surgery, I am now very seriously considering my OB/GYN's suggestion that I have my ovaries removed. I am, quite frankly, tired of all these cysts, and knowing that my parternal grandmother died of ovarian cancer, I am forever worried that someday it might not be a cyst at fault. And to be frank, my periods have been very troublesome since I had my tubal ligation three years ago. I would not be sorry to bid them adieu.

In addition to the kidney stone/ovarian cyst problem, I am having yet again another Prescription Refill Disaster. This time it concerns not my pain meds, but my Tegretol, which I use to combat the trigeminal neuralgia. The very last thing I need right now is a bout of the neuralgia, so it's very important that I take my meds. Tegretol is also a drug which needs to build up a "level" in your bloodstream. I always call it in for a refill several days before I run out, so that I DON'T run out.

Well, it didn't work out that way this time. I kept calling my pharmacy to check on the refill, and they kept giving me the same answer: my doctor's office had not yet called back. I contacted the Prescription Coordinator, and got the ever-present voice mail. I was finally able to speak with him, and the first words out of his mouth were, "I don't even see that medication on your record." I've been taking it for over a year now. He then mumbled something about being "behind" and assured me it would be taken care of that very day.

That was four days ago. I still have no meds.

After playing voice mail tag for another two days, my husband finally called and insisted on speaking with the ever-elusive Prescription Coordinator, who promptly blamed it on my doctor not being in the office. The prescription was then given to the "general pool" so that one of the other doctors could sign it. That was yesterday. I finally got a call from the pharmacy today....it is filled and ready. Unfortunately, it was filled and ready three hours after my husband left for work, so I will not be able to actually get the prescription until tomorrow...which marks two weeks without it.

My face started to hurt today.

I am also incredibly shaky from what I assume is the level of Tegretol in my system going down. I can't stop shaking. I can't count the things I have dropped in the past week.

I see the doctor again on Monday. Because of the cyst/stone situation and now, my face acting up, I have little doubt that I will have to ask for more pain meds this month. I hate doing that, but I don't see where I have much choice. Maybe if my Tegretol had been filled on time, I could've swung it, but now? Not so much.

On the happier side, yesterday was my ninth wedding anniversary. My husband bought me some lovely silver nose rings, a beautiful chocolate-brown shawl and a box of Godiva chocolates. I think I'll keep him.

Anyway, that's what's been keeping me from the computer recently. Sitting up at the computer desk is extraordinarily painful. I'm beginning to think there's something to my husband's laptop idea. I have always been worried that I would break one in a Big Clumsy MS Moment, but I have really missed blogging and I've really missed my online support group and message boards this past week. Food for thought.

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Thursday, August 10, 2006

Second Eye Blind, and Yet Another Prescription Mess

For the past few weeks, I have been experiencing what I refer to as a "Super Attack." All my symptoms seem amplified 100 times or more. It's annoying, but it usually tapers off in a few weeks and I've learned to just rest and ride it out.

On the 28th of July, I began trying to call in my prescription for Oxycodone with the prescription coordinator. I say "trying," because her voice mail was completely full until the 1st. On Thursday evening, I get a voice mail from someone named "Carl," telling me that I can't have my prescription, as the Well-Accessoried Doctor is no longer with the clinic. I must see a new doctor before I can have my pills.

Uh oh, someone didn't read the chart! I DID see a new doctor, on the 17th!

So I call them back last Friday, and finally was able to speak to this Carl. After explaining that I had already seen the doctor, he told me he'd put the prescription request back in to the new doctor and call me when it was done.

On Sunday night, I noticed I was having blurry vision. I've read about this in MS books, but never actually experienced it myself. My eyes would "cloud up," as if I were looking through fog....and then as quickly as it came, it would disappear. After consulting a few of my books, I decided to just rest some more and hope for th best.

On Monday afternoon, I woke up from a nap...and could barely see anything. I put on my glasses...no change. My first thought was that it reminded me of summers when I was a kid, when my sister and I went to our neighborhood swimming pool nearly every day (it was 50 cents admission, and for another $1.50 you could get a hot dog, soda and a bag of chips or box of Cracker Jack). One summer, for a few short weeks, the pool guy kept putting in too much chlorine. When you'd swim underwater, it was so murky, and it kind of burned your eyes to look through it. That was the same sensations, the same kind of murky vision and eyeball pain I was going through on Monday, some twenty years later. Isn't it odd what will be our first reaction to stress sometimes?

My next thought was, "Holy crap, I can't see." The pleasant reminder of my childhood swimming hole was replaced by sheer terror. Intellectually, I understood that optic neuritis can happen to anyone with MS, at any time. Emotionally, all I could feel was frightened at my loss of vision.

After some experimentation, I realized that the bulk of my eye problems was centered in my right eye (my right side is my "problem" side). It was, however, throwing off my vision entirely. It was almost like trying to see through a dense fog. I kept compulsively rubbing my eyes and blinking.

So I called the doctor, and first spoke to a nurse, "Bob," who then relayed my message to an attending and got back to me. The advice: rest, and come into the office on Wed. morning. I also found out that the new doctor wasn't in the office AT ALL this week! What about my prescription?!?!?

I spent most of Tuesday, bored as bored could be. I couldn't concentrate on anything for more than a few minutes at a time. I couldn't read, use the computer or watch TV. It was like listening to Donald Rumsfeld sing: pure torture.

So finally, I get into the doctor's office yesterday morning, and see an attending, "Dr. Wink" (thus named because he looks eerily like a game show host). He basically told me I needed a referral to a new neurologist, and they couldn't do anything for me. He also suggested I see an eye doctor, and was very perturbed about the fact that I haven't seen one in two years, despite the fact that my insurance only pays for eye exams every other year and that I did give birth in 2003! He also didn't seem to notice the fact that I've spent the last year or so working on dental issues and then recovering from the intense attacks of trigeminal neuralgia that even a dental cleaning will cause. But, I wasn't in the mood to argue....especially as Dr. Wink gave me my prescription! Hallelujah.

My vision has mostly cleared up now. Every now and again, the blurriness comes back, but it only lasts a few minutes. The pain is mostly gone.

But it's a fine mess I've gotten myself into this time, Laurel....

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Thursday, July 06, 2006

A Comedy of Errors: My Latest Rx

This is another long story, so bear with me...

First, some background information: every month, I have to pick up my Oxycodone prescription at my doctor's office. It cannot be faxed or called in, and no one else can pick it up for me. So no matter how badly I feel, or how hot it is outside, I must come and pick the prescription up at the doctor's office, then turn it into the pharmacy...who then must call the doctor's office to make sure the prescription is legit.

In order for the prescription to be there waiting for me, I have to call the Prescription Coordinator and leave her a voice mail. Every month, it's the same message: "Hi, it's Zen Angel again. I need to pick up my monthly Oxycodone prescription. Please call me when it's ready to be picked up. Thank you."

Here's where it starts to get prickly: there are a lot of problems with this current system. I can only get the prescription if I call ahead at no more than one week before I need it to be filled (the first of every month), and I cannot call on weekends. If I call earlier than one week, my message is pretty much ignored. If I call too late, I will generally have to call back several times before it's ready. The main problem is, I'm never sure what "too late" or "too early" is. I've been ignored at 6 days before the first, and had to call repeatedly at four days. At least three times out of every five times I call, the Coordinator's voice mail box is full, and the receptionists will not forward any messages to her directly. Every month, it's a crap shoot. I might get the prescription on time, and then again, I might not.

The worst part about this scenario is that with the current amount of Oxycodone I get a month, I run out the last week. I've tried stretching them out, but that means I am miserable all month long, instead of just one week out of the month. So I chose the lesser of two evils. But by the time the first rolls around, I am usually more than ready to get that refill.

Now, the Comedy of Errors....

I made my call 5 days before the prescription needed to be filled, mindful of the fact that the first was on a Saturday and it was 4th of July weekend. I get the call on Thursday that my prescription is ready for me to pick up. On Friday, we head out to the doctor's. Jonathan and the kids wait outside while I run in to get the prescription. This is usually a five-minute process, while I wait in line, show my ID, and check to be sure the prescription is correct.

I wait in line. I show my ID. I check the prescription...and there's a problem. Three, to be precise.

First of all, the prescription is dated for July 2nd, a day late. This would normally not be a problem, but July 2nd was a Sunday. No doctors to confirm. That means I would have to wait until Monday to drop it off, and with the holiday, there was no telling when I would get my medicine. I'd had a particularly bad time with pain recently, and the thought of waiting three or four days or more to get the medication was unpleasant in the extreme.

The second problem was with the date itself. Someone had scribbled over the date, re-wrote it, and then wrote it again underneath the "date" line. It looked very much as if someone had tampered with the prescription. There was no way the pharmacy was going to fill that.

The third problem was a note written on the bottom of the prescription: "Patient must find new PCP for next month's Rx". WTF? Did that mean my doctor was gone, or was I being dropped like a hot potato? No one had said anything to me about needing a new doctor!

I show the faulty prescription to the receptionist and explain my problems. She handed the paper over to the Prescription Coordinator (whom I have never met in person until then) to handle the problem.

With problem #1, the Coordinator tries to convince me that the 2nd is the correct date. No ma'am, I always get my pills on the first. She checks my chart, and sees that I am right. I also then point out to her that the 2nd is a Sunday, meaning it would be the 3rd or even the 5th before I was able to have the thing filled. She asks me if I want the prescription re-written. I say yes, and point out problem #2. This problem seems to irritate her. "Yes, I know about the scribbles, that's why she wrote the date underneath." That's all well and good, but there's no way I can get that filled, not for opiates! I looked like the original date had been Feb. 06 and not July 06. So she takes the prescription back to a doctor to get it re-written. I go out to the car to tell Jonathan what the hold-up is. He brings the kids inside out of the heat.

20 minutes go by before the Coordinator returns with my prescription. This also would normally not be a problem, but the air conditioning at the office is either not turned on or not working. Bad news for heat-reactive me.

When she brings out the new prescription, the note for a new doctor is still there, so I inquire. It turns out the Well-Accessoried Doctor is no longer with the clinic. I have no idea when this occured, because this is the first I'm hearing about it. I need to call the clinic and get a new PCP, I was told.

That actually might be a cloud with a silver lining for me, as I've been considering seeing a DO for some time now. It was only my good rapport with the Well-Accessoried Doctor that was keeping me at the clinic.

But I digress. You see, the Comedy of Errors is just beginning.

On the way back from the clinic, we go through the pharmacy drive-through and drop off the prescription. We are told to return tommorow morning to pick it up. No problem!

Saturday morning arrives. I have had a horrible night, dealing with pain. I have yet to sleep. Jonathan wakes up as soon as the pharmacy opens, to get me some relief.

He arrives to find the pharmacy is...closed. For the entire day.

He gets out of the car and goes in to find the manager. It appears the head pharmacist is getting married, and the assistant pharmacist is "sick." The manager has no keys to the pharmacy and cannot even get our original prescription back for us so we can go to another pharmacy. Had it been any other kind of medication, it would be in the computer and we could go to another pharmacy in the chain...but that isn't how it works with Oxycodone. You have to turn over the paper prescription, or it's a no-go.

It takes almost an hour before the manager has any advice for Jonathan. During this time, Jonathan is sitting inside the pharmacy in a white t-shirt and his Snoopy pajama pants (remember, he thought all he had to do was go through the drive-through). He is relieved when the manager tells him they have found a solution: a pharmacist who sometimes works at this pharmacy, but usually at another (hereafter referred to
as Pharmacy #2), will come in, unlock the door, and get the prescription. He will then take it to Pharmacy #2, fill it, and give it to us. Jonathan is told to return home and the pharmacist will call him when it is all done.

After waiting two hours, Jonathan calls Pharmacy #2. He is told that our presciption is not filled, and not on the premises. Baffled, Jonathan (dressed appropriately this time) heads out to Pharmacy #2.

The pharmacist tells Jonathan where the mix-up occured: another patient at Pharmacy #1 also needed a painkiller refill. The pharmacist had only been told about one prescription, so when he arrived at Pharmacy #1 and spoke with the other patient, he assumed that was the prescription that needed to be filled, and took only that one with him. Until my husband had called, and the pharmacist had checked the with manager of Pharmacy #1, the pharmacist had not been aware of our situation.

So now Jonathan returns to Pharmacy #1 to speak to the manager and find out what went wrong and what can be done to fix it. The manager makes a lot of frenzied phone calls, and finally a new solution has come up: the pharmacist from Pharmacy #2 would take a break, come to Pharmacy #1 and pick up the prescription, then go back to Pharmacy #2 and fill it.

This time, Jonathan decides to wait around until the pharmacist shows up so as to avoid the same situation from occuring again. He was also mindful of the time: he had to be at work in a matter of hours.

Finally, the pharmacist arrives. And instead of making Jonathan go to Pharmacy #2, he just fills the prescription right there and hands it over. Why no one thought of this in the first place is beyond me.

And so, a mere five hours after I was supposed to get the prescription, my Oxycodone finally makes it home. Relief!

I wonder what will happen NEXT month...

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Saturday, June 10, 2006

My Life With Secondary-Progressive MS: Sick and Tired....

....of being sick and tired.

As usual, summer has hit and I am struck by the MonSter. It is different this time, though. I didn't think it would be. I thought when my MS morphed to secondary-progressive it basically meant no more relapses and a steady progression of the disease. I didn't realize how much worse it was going to be. The lack of information on this is very depressing. There's a plethora of websites, books and other resources on R&R MS. But for SP? I'm finding very little. Literally, a paragraph or two. There's GOT to be more to it than that...and I think I'm beginning to realize that there IS more to it than that.

I am so very, very tired. The kind of tired where your muscles ache and burn and you can feel it in your bones. It reminds me of the time when I, in a moment of pure madness, decided to walk the bike trail from Xenia to Yellow Springs in Ohio. All while pushing my son in his baby stroller! When I finally got to the cafe, I felt like I had been walking for years. And that's what this feels like: like I've been walking for years. Like I walked from Xenia to Yellow Springs again, just this morning.

On top of being tired, I am also struck with weakness. My legs wobble when I walk. They shake, visibly. The entire leg, not just the calf like I am used to, but all the way up to my thigh. I feel like I'm auditioning for an Elvis tribute band every time I try to walk down the stairs. And walking up the stairs? It's taking forever. I feel as if I am literally pulling myself up by the banister. I find myself avoiding the stairs whenever possible. When I DO climb up the stairs, it takes several minutes for me to feel "normal" again. Climbing the stairs in your own home should not be this taxing on a person's strength...and yet, it is.

The weakness in my legs is also making it very hard to walk in general. The canes I bought for "occassional use" two years ago have now become everyday necessities. I can't even recall the last time I left the house without one. I can barely walk IN the house without one, most days.

The weakness isn't just in my legs, either. My arms, my hands, are also affected. Signing my name has suddenly become a Herculean test of strength. Brushing my hair makes my arms burn as if I've been practicing for a weight-lifting contest instead of just trying to make my hair look like it isn't the result of my putting a wet finger in a light socket. I no longer trust myself to carry hot food from the kitchen to the table (especially after the infamous Chicken Soup Burn Incident). I drop things constantly, and when I visit my goddaughter, I prefer to be seated when holding her. I've never dropped a baby in my life...and I'd like to keep it that way.

I am also finding that minor problems I have had for years are becoming major problems. I'm in the bathroom constantly (I've yet to respond well to a medication to control that). My muscle spasms have gotten so much worse that I've gone from taking one Baclofen a day (as I have for at least four years now) to taking three or four. The nerve pain and sensations are so much worse; the worst they've been since my awful trial on Neurontin (a long story for another day). Trying to fall asleep at night has become a little bit like waging war on my own body: will the pins-and-needles stop? Will the nerve sensations go away? Will my muscles start spasming as soon as I finally drift off to sleep? How many times will I wake up in pain, or needing to go to the bathroom...so I can do the whole rigamorale over again?

This is not like the R&R MS. It's like R&R MS, intensified.

All in all, I feel very much like an invalid lately...and that's something I am not used to. I am sleeping more and getting less out of it. The slightest bit of excertion leaving me in pain and reeling from fatigue.

I just have to wonder: am I feeling like this because it's summer and the MS is spanking me like a bitch, or am I feeling like this because this is what secondary-progressive feels like?

I wish I knew. I keep looking for the answers, and no one will tell me. The lack of information on secondary-progressive MS is astonishing. When I do a websearch, I get plenty of definitions on what it IS, but no real, useful information as to what I can expect or how to cope with it. Each site just keeps regurgitating the same story over and over: the percentage of people who get it, and it's a "progression with less or no relapses." Yeah, I get that. But what does that MEAN in my day-to-day life? On most sites, the only mention of it at all is in a breakdown of the various forms of multiple sclerosis. I know all of that already...what I don't know is: is how I am feeling normal? Is this what I need to expect? How do I know when it ISN'T normal? I keep hearing about going to the hospital for steriod treatments when it "gets too bad." Well, how do I know when it's "too bad"? What are the signs of needing to go into the hospital? What happens if I should have already gone, but I didn't know?

Let's take this one MS site, for example. This is the extent of the information they have on secondary-progressive MS:

Secondary-progressive MS
Without treatment, Secondary-progressive MS, formerly called chronic progressive MS, develops within 10 years in about 50% of people who have had relapsing-remitting MS.

Some people with secondary-progressive MS have relapses, but many do not. In time, people with this condition experience a gradual and continuous increase in symptoms and disability.

Fifteen years after being diagnosed with Secondary-progressive MS, some people may require walking aids, such as a cane, and others may need use of a wheelchair.


This is typical of the information on the Web concerning secondary-progressive MS. How exactly does this information help me? The first paragraph is just statistics, meaningless when you've already been diagnosed with SP. The second paragraph is too vague to be of much use. And the third? I was ALREADY walking with a cane when I was diagnosed with SP! What does that mean for me?

That's basically what I'm finding online, folks. Statistics and vague definitions. And the stastics change from site to site, rendering them pretty much useless.

And so I turn to my support groups. These are usually incredible fonts of information: first-hand accounts of what it feels like to have MS and what may or may not help. I have learned so much from my groups over the years; they have been truly invaluable.

But now I find, that like the Internet, they have little to offer me in the way of practical information and advice. The vast majority of people in the groups have R&R MS. In most of my groups, I am the only person with secondary-progressive. If there ARE others in the groups with SP, they are choosing to remain silent about it for whatever reason...I post and I post, asking for info, and getting nothing. I'm not ignored. People respond, but it's with "sorry, I don't have the answers, I wish I did."

It's frustrating. I feel like I am running in the dark. I don't know where I am going and I'm not sure what direction to run in.

People who don't have MS are now advising me, "Ask your doctor." They mean well, and I politely thank them for their input. But honestly, do they think I've never thought of that on my own? That I haven't tried just that? Doctors are more vague than that website! I get the same "each case is different, so it's hard to tell how yours will progress" lecture I've been getting since I had R&R MS. Occassionally, a doctor will direct me to an MS website...which, as we know, tells me little to nothing. Or they'll hand me a pamphlet, which has the same info the website has.

So what now? I plan to go to Powell's soon and look for books. Maybe someone's written about this form of the disease, and that will help me. I'm thinking that looking at online bookstores for possible titles and so on wouldn't hurt, either. I just refuse to believe that there isn't some practical information, somewhere. Depending on where you get your statistics, anywhere from 25 to 50 percent of people with R&R MS will get SP. Surely, SOMEONE has written about it?

I hope so, earnestly. I hate running in the dark.

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Saturday, June 03, 2006

Woman Arrested Over Pain Relief Prescription

Walgreen's is at it again, folks....


Tacoma woman sues drug chain over arrest

The Associated Press


A Tacoma woman with an incurable brain tumor has sued Walgreen Co., saying that when she arrived to pick up her painkiller prescription one day, a pharmacist had her arrested.

In a lawsuit filed Thursday in Pierce County Superior Court, Shannon O'Brien, 35, said she went to the drive-up window at a Walgreen Drug Store two blocks from her home in Tacoma's north end last July 7. The pharmacist on duty thought she had faked her Percocet prescription and called police, the lawsuit stated.

"I was in hysterics, crying, very upset and very embarrassed," O'Brien said Thursday. "They could have checked my records. I've had the same medicine every month."

A woman who answered the phone at the pharmacy Thursday directed inquiries to Walgreen's regional office in Bellevue, where a telephone message was not immediately returned.

A spokeswoman based at Walgreen headquarters in Deerfield, Ill., said yesterday she could not comment on pending litigation.

According to the lawsuit, when the pharmacist called the University of Washington Medical Center's neurosurgery department to ask about it, he was told that O'Brien's doctor, Alexander Spence, was unavailable, so the prescription couldn't be confirmed right away.

That's when the pharmacist called Tacoma police, the lawsuit said. O'Brien was still sitting in her car at the drive-up window when they arrived.

O'Brien's family posted bail that night, but she was still without her medicine. She was arraigned the next day; as a condition of her release, she was required to attend a session at a drug-treatment facility.

Her lawyer eventually succeeded in getting the felony prescription-fraud charge dropped after her doctor provided confirming information to the Pierce County prosecutor's office.

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Friday, April 28, 2006

Doctor Supports Pain Relief

Pitching Relief
A Physician With Firsthand Knowledge About Pain Advocates Opium-Based Drugs Despite Fears of Abuse

By Marc Kaufman
Washington Post Staff Writer
Sunday, April 23, 2006


Howard Heit knows pain.

He lives it, he studies it, he works to reduce it. His own pain used to get so bad that he wore patches of hair off the back of his head by rubbing it hard against walls in a desperate effort to get some relief.

"What I was feeling was like a cramp in my leg, but multiply that by 100 times and make it continuous," he now says. He no longer hurts like that, but he still wears a brace with a head attachment he can push against for acupressure when a pain spasm hits.

Heit is a doctor. Today he's a pain and addiction specialist in Fairfax, but once he was an up-and-coming gastroenterologist, a football player, a jock. That was before his auto accident, the one that changed his life and taught him about pain problems the very hard way -- as a patient who often didn't get the help he so badly needed.

The doctor still spends a lot of time in his wheelchair, but that hasn't stopped him from becoming a prominent practitioner and lecturer over the past decade. More recently, his profession and personal history have propelled him to the center of a contentious national dispute that he virtually personifies.

On one side, the Drug Enforcement Administration and Justice Department -- alarmed by the seemingly widespread diversion of opium-based prescription drugs such as OxyContin and Dilaudid to addicts and abusers -- have investigated, arrested and prosecuted as "drug dealers" scores of pain doctors who allegedly misused their authority to write prescriptions for narcotic painkillers. On the other side, many pain doctors and patients have protested the DEA's approach as overly aggressive and punitive, saying that it's unfairly penalizing pain patients.

Heit, 61, doesn't use prescription opioids for his own pain now, but he does prescribe them in high doses to many of his patients, and he's seen the drugs (in conjunction with proper monitoring) provide remarkable relief -- the kind he still wishes he had had available back when he really needed it. As the showdown between pain doctors and prosecutors stiffened several years ago, he felt obliged to get more actively involved in defense of opioid treatment despite the potential risk to his practice.

So he joined a team of 18 pain and addiction specialists, hospice and cancer-care workers and DEA officials to write and review guidelines for the proper prescribing of narcotics. He was delighted when, after more than two years of work, their Frequently Asked Questions presentation was posted on the DEA Web site in the summer of 2004. But several weeks later the FAQs disappeared from the site and was soon essentially repudiated by the agency, leading 30 state attorneys general to write to the agency in protest. The chill in the world of pain management has grown worse ever since.

"It now is apparent to me that the spirit of cooperation that existed between the DEA and the pain community to achieve the goal of balance has broken down," Heit wrote in a much-discussed commentary in the journal Pain Medicine last month. "The DEA seems to have ignored the input and needs of the healthcare professionals and pain patients who actually prescribe, dispense, and use [prescription opioids]."

Tough words from a man who shares some of the DEA's concern over drug diversion, but who clearly cares most passionately about making sure that pain sufferers get the relief they need.

"Our government is letting the misbehavior of a relatively small number of people too often trump the needs of many, many good people with complex medical problems and lots of pain," he said recently, seating behind his office desk where a chart of pain levels is prominently displayed. (1-2 is mild pain, 5-6 is distressing pain, 9-10 is excruciating pain.) "Many doctors won't prescribe for pain now. And believe me, that's not where we as a society want to be."

A New Era Reversed

Pain is the most common symptom that brings patients to a doctor's office, but it remains one of the least understood. There's no CAT scan, no blood test to objectively measure the level of a person's pain, and years of research have determined that different people experience pain very differently. So pain patients are an inherently challenging group for doctors, their ailments difficult to assess and their suffering often difficult to treat.

The strongest and most effective pain relievers are opioids, derived from the opium poppy or synthetic versions of its active compounds. In the popular imagination, and traditionally in law enforcement, opioids have been associated with addiction, moral weakness and crime. That the same compounds are a godsend to millions of suffering but otherwise unexceptional and law-abiding people is far less widely understood.

The nation's qualms about narcotic pain relief seemed to lessen in the 1990s, when many researchers concluded that the drugs were less likely to cause addiction in pain sufferers than earlier believed. While many patients will become physically dependent on opioids -- just as other patients become dependent on insulin, calcium channel blockers or anti-depression medicine -- the overwhelming majority can and will be weaned off if their pain subsides. The advent of OxyContin, a time-released, partly synthetic opioid that provides unique pain relief, added to the sense that a new day had arrived in the nation's thinking about opium-based pain relief.

But that was before OxyContin abuse and overdoses became a widespread problem in places like Appalachia and rural New England, and before local leaders and politicians began calling for stronger action to keep these prescription products from turning into a street drug of choice. It has proved very difficult to stop the criminal diversion of prescription narcotics from the nation's drug supply chain, but relatively easy to identify doctors who write large numbers of Percocet or Vicodin or OxyContin prescriptions that -- through carelessness, bad luck or, as prosecutors charge, criminal intent -- sometimes fall into the wrong hands.

Using sometimes novel legal theories, prosecutors have charged many pain doctors with prescribing opioids "outside the normal practice of medicine," and dozens are now in, or facing, jail. One of the most prominent is William Hurwitz, a nationally known pain doctor also based in Fairfax. After a trial last year, Hurwitz was convicted of 50 counts of drug trafficking, and was found responsible for the overdose death of a patient and serious injuries of two other patients. He was sentenced to 25 years in federal prison.

At the time of his sentencing, DEA Administrator Karen Tandy held up a plastic bag with 1,600 pills and said they were prescribed by Hurwitz to one patient on one day. "Dr. Hurwitz was no different from a cocaine or heroin dealer peddling poison on the street corner," she said. "Indeed he was worse, because unlike the street dealer, he had and abused the trust and authority to treat people in pain. He hid behind his white lab coat and Stanford medical degree to try to conceal the fact that he had become a common drug trafficker."

(Regarding the prescription for 1,600 pills, Hurwitz said it was a clerical error that was corrected by a pharmacist before it was filled.)

That case is now on appeal and has become -- along with several other prosecutions -- a cause celebre for advocates including those in the Pain Relief Network, who are helping Hurwitz and a number of other arrested and convicted doctors to fight the charges against them. While acknowledging that Hurwitz could have been more careful in some of his prescribing, his supporters cast him as a dedicated and courageous professional who has been railroaded by the government.

The new era in pain relief anticipated and promoted by pain doctors and drug manufacturers seems increasingly far off.

Lives Transformed

Wendy Shugol is a nationally recognized special-education teacher at Falls Church High School, a French horn player in the Fairfax City Band, a horseback rider and avid woodcarver. She also has cerebral palsy and a host of other serious conditions, and doubts she could even get out of bed were it not for the massive doses of opioids she takes daily. She says her referral to Howard Heit in 1998 marked a fundamental transformation in her life. "I'm a different person now," she says. "My life was miserable, and I was basically miserable to be around."

Shugol, 54, wheeled herself into Heit's Arlington Boulevard office two weeks ago for a monthly appointment, smiling broadly and filled with an energy seldom seen in people who don't carry her many physical burdens. The first order of business was, as always, to hand Heit her vials of drugs, so he could see exactly how many pills she had used since the last visit. Heit took out a pill counter and went to work, first on the OxyContin, and then the Dilaudid. He was puzzled to find more than 100 extra pills.

"Have you been taking everything you need?" he asked.

"Yep, but I think you made a mistake last time," she replied. Rather than writing a prescription for 230 pills, Heit had written one for 330 pills, and that's what the pharmacist filled. (a note from Zen Angel: I have never gotten an RX for more than 60 pills...and those 60 are not nearly adequete for my needs).

As Shugol continued to talk of the active life she can now have because of the opioids and her care by Heit, the doctor went through the detailed paperwork he keeps on all patients. He found a photocopy of his last prescription for her and, to his chagrin, he had indeed overprescribed by 100 pills.

"What you're seeing here is that we're all human and make mistakes," Heit said, somewhat sheepishly. "But Wendy returned them, as she should, and I can see from my records exactly what happened. These are powerful and valuable drugs, and so we should take great care."

Without intending to, Heit had demonstrated an issue at the heart of the doctor-DEA debate: What constitutes a medical error in prescribing, and what constitutes criminal behavior? Many doctors who have been prosecuted argue that they were aggressively treating pain as the literature now recommends, and that sometimes they made mistakes by trusting a patient who said he or she was in great pain and needed opioid painkillers. In response, the DEA says doctors who are prosecuted show a pattern of misprescribing that has more to do with a desire for money, easy-to-please return patients or even sexual favors than with the proper treatment of pain.

Shugol had followed Kathryn Brock of Reston -- another woman in a wheelchair with an easy smile and a strong desire to remain active -- into Heit's office. Brock sufferers from rheumatoid arthritis in virtually every joint in her body, and she, too, is subject to constant pain. She says that her regimen of six OxyContin and eight Dilaudid pills a day has kept her marriage going, and gives her the ability to continue painting, which she does regularly.

Like Shugol and most other chronic pain sufferers, she says the opioids don't make her feel euphoric or "high" at all. (Researchers believe that the pain essentially soaks up the drugs' active ingredients for most legitimate users.) Another Heit patient the same afternoon was an administrator in a healthcare business, a man in his mid-forties who developed a condition 10 years ago that caused him to pass frequent kidney stones. The pain was so excruciating he would collapse on the floor. He was going to a nearby emergency room regularly.

The man, who requested anonymity because of the continuing stigma associated with opioid use, began pain treatment with Heit three years ago. He hasn't been to the emergency room since.

Coming to Terms

Heit began learning about pain in earnest at 41, two decades ago, after a speeding car smashed into his in McLean. He didn't immediately feel his injuries, but in the following weeks he began to have increasingly intense spasms of pain around his neck and head. A lifelong athlete, he tried to ignore the pain but it grew, and his neck began to rotate uncontrollably with a condition later diagnosed as axial spastic torticollis.

Heit says it took a long time for him to come to terms with his changed life, after going through the classic steps of denial, bargaining, anger, depression and late acceptance. His anger phase featured an obsession with people who park their cars illegally in handicap spots. He would glue a sticker that read "Stupidity is NOT a physical handicap" on their windshields and ultimately got into 18 fistfights with motorists who weren't happy with what he'd done. (He says he left the field undefeated.) His depression emerged after it became clear that he couldn't practice medicine as he had known it.

But at the end of a conference about the brain that he attended, an epiphany: He could still be useful, he had something to contribute, and he would rededicate his professional energies to pain management and addiction. Over several years he retrained in this underappreciated specialty, and in 1992 opened his practice.

While caring for 250 to 300 patients in his practice, he also teaches at Georgetown University School of Medicine, speaks regularly at pain and addiction conferences, writes and co-writes dozens of journal articles and does consulting work for some major manufacturers of prescription opioids. One of his ambitions is to persuade medical schools to give more attention to training students in pain management and what he always calls "the disease of addiction."

While Heit isn't shy about prescribing high-dose opioids when he thinks they're necessary, he's also a great believer in the maxim that satisfying activity is one of the greatest analgesics. This is an approach he often shares with his patients and says his own history and condition -- he can walk only short distances before needing his wheelchair -- appears to give him credibility.

"A patient will tell me of a problem they're having, a feeling, and I'll be able to quickly know exactly what they mean," he said. "I've been there, and they know it."

Heit's personal story also appears to give him some added credibility with federal authorities. He worked closely with DEA liaison and policy chief Patricia Good on the ill-fated Frequently Asked Questions, and the two remain friends. Good says she was impressed by Heit's dedication to patients, his determination to run a tight ship in terms of narcotics he prescribes, and his willingness to engage with -- and even take on -- the DEA. She found Heit to be open to the DEA's conclusion that some pain doctors were careless or worse with their narcotic prescriptions, and he was eager to put together professional guidelines that could help the DEA while protecting doctors and their patients.

The FAQ document was widely applauded as a successful collaboration, and was welcomed by the Journal of the American Medical Association. But soon after, lawyers at the DEA concluded that there were errors in the statement, and so it was withdrawn. Good says the agency plans to present its own policy guidance soon, but many pain doctors are skeptical that anything positive will come of it. (Heit is not one of those. Despite his broadside against the DEA, he hopes that the agency will resume its discussion and even collaboration with pain and addiction doctors.)

Good, who retired last year, says she supports her former agency's narcotics-control mission, but remains disappointed that the FAQs were deemed flawed. And so, when the agency was planning her retirement party, she asked that a number of pain doctors be invited to recognize their collaboration. Howard Heit was the only one who made it.

The Gift of a Baby

A fourth patient seeing Heit earlier this month was a young woman who had fallen down a flight of stairs at a nightclub and ruptured two disks in her neck. Another jock accustomed to playing with pain, she tried to gut her way through it. Doctors recommended surgery, but she resisted.

Her boyfriend recommended Heit, and she began treatment. She improved markedly, married the boyfriend and, while still on OxyContin, got pregnant. She knew she could never get through the pregnancy without the medication, but she was concerned that the child could be in withdrawal at birth.

When the baby was born in 2004, Heit was at the hospital to examine the newborn for signs of opioid trouble, and was relieved to find none. Heit is the kind of person who likes to connect quickly and deeply to others, and so it wasn't entirely unexpected that he would be in the hospital. But there was another reason for his presence.

The new mother, whom Heit had received permission from Virginia medical authorities to treat, was Jamie Heit -- his son David's wife. And the healthy child, born to a woman who wasn't sure she could ever carry a baby after her fall, was his first granddaughter, Lilly.

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Wednesday, March 15, 2006

Yesterday's Doctor's Appointment

Yesterday, I finally had my appointment with the Well-Accesessoried Doctor (yesterday's accessory: a gorgeous silver bracelet, perhaps of Navajo design or influence). She took one look at me and knew what was going on. "The TN again? How do you feel?" I told her I had slipped into the seventh ring of hell. I was that despondent.

The whole appointment, I was struggling with the pain and trying desperately not to cry. If there is anything in this world I hate, it's crying in front of anyone. It took me years before I felt comfortable crying in front of my husband, and I still prefer to cry alone or in the shower if at all possible. The crying in the shower thing started when I was younger and had to share a bedroom with my sister. Only in the shower, did I have any privacy. It's a habit I've never really broken...if I am very upset, I take a shower.

Many people might think the crying thing is out of pride, or a matter of image. I think it's more about my father's attitude towards crying when I was growing up. He absolutely could not tolerate it, for any reason. "Stop that crying or I'll give you something to cry about!" was one of his favorite axioms. Even as a child, I remember thinking that this was a load of horseshit. Beating a kid because they cry is NOT going to get them to stop crying...it'll make them cry more, and make them feel as if no one cares about their feelings.

It's backfired on me before, though, this difficulty with crying. I have had people, when I was younger, not believe me when I would talk of difficult things I had been through
(although that in itself was rare), because of the calm, almost detached way I'd speak of it. No tears. I recall one incident quite clearly: one night, when I lived with a bunch of friends in East Dayton, I was attacked in a parking garage. I narrowly escaped being raped. I went to the police, but never felt that they believed me. I later found out that my roommates didn't believe me, either...because I went straight to the shower and never cried. They didn't know me well enough to know that I went straight to the shower TO cry.

And in recent years, I've found that many doctors are unwilling to believe my level of pain is as bad as it is because I'm not weeping hysterically, like most other people would be in their estimation. They don't realize that I cry later, when I'm alone.

Back to yesterday's appointment. A few very good things came out it:


1) She agreed to look into the transdermal patch option, and photocopied the article I brought her from the Trigimenial Neuralgia Association newsletter. It may not be an option for me...but I had to at least try.

2) I told her what happened at the hospital with Dr. Otherwise. She took my letter and told me she would talk to Dr. Otherwise and definately look into this. She also re-affirmed that I am indeed supposed to call the on-call doctor before going into the ER during the weekend or off-hours, and that I am perfectly within my rights
(and reasonable to boot) to ask the on-call doctor to call the ER and let them know I am coming and why.

3) I got a shot of Morphine & Phenergan....which STOPPED THE PAIN! HALLELUJAH! Within minutes I felt like a normal person again...just a very, very tired normal person. I got something to eat, and slept for hours.

4) She also gave me a prescription for 30 more Oxycodone. I just pray I can make it til the end of the month with those. I thank God she gave them to me.


So for now, I'm as stable with the pain as I can be. Thank God Almighty for the Well-Accessoried Doctor!

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Friday, February 17, 2006

My Doctor's Appointment Today

Today, I had an appointment. It ended up being one which I am unlikely to forget.

First, I want to describe my primary-care doctor: she is a young white woman, maybe early to mid 30's, always has great accessories (she has a pair of striped socks I just love) and unlike many doctors in this day and age, she actually LISTENS to my concerns and best of all, she treats pain in a serious and humane manner. She's worth her weight in gold for that alone, as far as I am concerned.

Today, she had a third-year medical student assisting her: a very eager and attractive Asian man; a polite, scholarly type. He had a lot of questions about MS, and kept apologizing for being so inquisitive. I told him it was in his best interests, and in the best interests of his future patients, for him to learn as much as he can. I hope he keeps his curious nature intact; he may be a good one for medical research, or an excellent diagnostician.

Anyhow, I came into the doctor's office today for a few reasons:

1) The baby is finally weaned, so I wanted to go back on amitriptyline for nerve pain. I've had a lot of success with this medication, and I think being without it was one of the reasons why my trigeminal neuralgia has been so persnickety lately.

2) I've been having a lot of problems with naseau lately, and the phenergan isn't doing anything to help. I asked for, and got, a prescription for compazine. I have hopes that it will help put an end to the almost-constant sick stomach I've dealt with for the past week.

3) I'm concerned about how rapidly my MS symptoms are getting worse, as well as the emergence of several new and in my view, severe symptoms, such as momentary paralysis and tremors in my hands.


The first two were easily dealt with: prescriptions were written. The last required a neuro exam.

Neuro exams are part and parcel of the MS experience. It involves a lot of testing of reflexes and variations on "pull my finger," without the unforunate need for air freshener that accompanies your uncle's playing of the game. Basically, it tests your strength and responses.

This is when the appointment took an unpleasant turn. My reflexes in my right leg, which have been weak for years, are now pretty much non-existant. I'm also having some minor strength issues in my right arm, which is completely new for me. And my strength in my right leg? It doesn't appear that I have any. The student would say to me, "Push down on my hand," or "Pull your leg up," and I would do it...at least, it SEEMED like I would do it, but nothing happened. Or, nothing much happened. It was frightening; imagine someone telling you to close your eyes and kick your leg out. Well, you closed your eyes and you kicked your leg out, as far as you were concerned...but no one saw it, and your leg didn't move. Well, that's what was happening for me. It was confusing, and scary, and I can't say I enjoyed it.

It was the worst neuro exam I've had to date.

I didn't really notice until then, just how weak my right leg had gotten. I knew I'd been having a lot of trouble with it: increased muscle spasms, increased weakness when walking. Sometimes, my leg would turn to Jell-O under me, and I've been having some pretty unfortunate falls. My knuckle on my right hand is still healing from the last time it happened, and I fell in the bathroom. I reached out to break my fall, and slammed my hand onto the bathroom sink. Owie.

Logically, I knew all of this. But it wasn't until I was on that exam table, that I really noticed how bad it's gotten, how weak my leg is and how heavy it feels, like lead. Like dead weight.

Dead weight.

The looks on the faces of my doctor and the student were the worst part of it. They looked as if I had stepped in something extremely slimy and foul-smelling and they weren't sure what was the polite way of letting me know about it.

I smiled and joked about it, and made a lot of nervous chatter. I complimented my doctor's earrings. I spoke to the student of the importance of knowing how to treat a patient with MS, as there are many people with the disease. I wonder if they noticed how anxious and afraid I was.

When the exam was over, and the doctor looked at me with that look, the one of "I have some bad news for you, and I'd rather slam my pinky finger in a sliding glass door than tell you this." I spoke up and said, "Look, I think I know what we're all thinking here. I know lately it looks like my MS is going secondary-progressive. I think it's time to see a neurologist again." She very readily agreed, and a referral was made. She then told me she was very worried about this change, about how my MS has quite suddenly taken a turn for the worse and it's not behaving at all like it has for the past 8 or 9 years. She intimated there was some testing I should get done (evoked responses, is my guess), some "issues to be addressed" (my mobility, clearly) and that I really, really needed to see the neurologist again. She was very clear about not being comfortable in treating this herself. That, more than anything else, really sent home the message to me that this is SERIOUS. She also seemed very relieved that I understood about the secondary-progressive issue, and that I've come to terms with it.

Which shows what she knows, huh? Or that I'm just a damned fine actress.

As soon as I came out into the waiting room, Jonathan knew something was wrong. I made it out to the car before I began to cry.

Silly of me, isn't it? I mean, I have known for years that this day was likely to come. I knew that this disease could turn progressive, I knew that my right leg was getting weaker and weaker and that eventually I'd have to consider the "w" word.

So why have I been such a wreck since that appointment?

It seems that knowing something in your mind, and experiencing it emotionally, are two very different things. I thought I was prepared for this, and I wasn't. It feels like it is happening so suddenly, which is quite illogical, as I've had MS nearly a full ten years now. It doesn't make sense to feel this way, but I do. I am ambivalent, I am depressed and I am just plain scared.

Jonathan keeps telling me, "It could be worse." He's right, of course. It could be. But that doesn't help right now. What does help is knowing that he is there for me, and will be there for me through all of this.

And for now, I feel another pity party coming on. Bring on the chocolate ice cream....

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