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...

Tin God Syndrome: The Hit-and-Run Doctor

If you haven't read the post below...I have had two run-ins with Tin Gods in the past few months. The one below, the Doomsday Doctor, is a thankfully rare beast.

This one, the Hit-and-Run Doctor, is not.

It is possible that Hit-and-Run Doctors are the most common of all forms of Tin God Syndrome. It is very rare that a person with a chronic health issue doesn't have a run-in with at least one, and usually far more than that. Of all the Tin God stories I hear, H&R Docs are the most common.

My story begins about a month ago. Summer started early in Portland this year, and temperatures were at near-record highs. Not good news for those of us, like myself, who suffer from heat-reactive disorders. All you can do is embrace the central air and cope with the symptoms with liberal doses of medication & good-old fashioned North Carolina sweet tea (of which I am an expert).

I've had MS now for well over a decade. My most hated symptom is not pain. It's not the loss of mobility. It's nausea. I absolutely loathe being nauseated. And while I cope with mobility issues rather stoicly, and I have a high threshold for pain which goes a long way towards dealing with that unpleasant aspect of MS...I am a giant crybaby about nausea. I am the least likely person on earth to become bullimic: the idea that anyone FORCES themselves to vomit is just beyond my ability to comprehend.*

It's just my bad luck that every summer, the Nausea Fairy comes to visit me in force. I have tried damn near every medication on the market. Phenergan worked well for me for years, but it's now to the point that in order to take enough of it to be effective, it turns me into a complete zombie. I almost enjoyed watching Rock of Love on it once. It's that bad.** One of the medications I tried last year was Reglan. I used it for about three days, and it was ineffective. I was switched to Zofran, which works very well (and the pills are super-tiny, making them very easy to swallow when you're feeling sick to your tummy---I'd like to shake the hand of the scientist who realized that). I put the remainder of the Reglan away in a box, and promptly forgot about it.

Fast-forward to last month: I was suffering severe pain and terrible nausea. And wouldn't you know it: I ran out of Zofran, and the pharmacy was closed. Desperate, I checked the medicine box and found the long-forgotten Reglan. I called the doctor on call (I had begun taking one different med since the last time I was on Reglan, and I wanted to be sure it wasn't counterindicated). I got the go-ahead, and took the pill. Within 20 minutes, I was nausea-free.

Since the Zofran is rather expensive, and the Reglan was working, I continued to take it for the next week. The only side-effect were some vivid and disturbing nightmares, but I can deal with nightmares. Nausea, not so much.

Then one day, I woke up and just felt WRONG. I couldn't immediately put my finger on it: but I knew something was up. As the day progressed, so did the feeling. But now, it was accompanied by some startling symptoms: terrible anxiety; confusion; tremors in my hands; a sensation of being freezing cold (during a very hot summer afternoon); a loss of appetite; and a tightening in my chest, face & jaw that was causing my TN pain to go into overdrive. I called the doctor, and waited for a call back.

While I waited...all hell broke loose.

I began to sweat, while still feeling freezing cold. My heart was racing and pounding, the anxiety went from mild to overwhelming, and it was coupled with a debilitating sense of paranoia. I couldn't cope. I began to have a panic attack...which is not like me in the least. Most people who know me would describe me as a calm person, and at that moment, I was the least calm person in the known universe. I felt like I was going crazy. I didn't feel like me at all.

The doctor called back, and told me that this sounded like a "known and not uncommon" (WTH?) bad reaction to Reglan, and I needed to go to the ER right away. By the time my husband raced home from work to take me, I was rolled up in a ball in a corner of the bed under three blankets, shaking and crying uncontrollably, startled out of my wits by the slightest movement or noise (confusing the hell out of the cat), trying desperately not to scream because I knew, with what little sanity I had left, that if I started screaming I would not be able to stop.

When I got to the hospital, I was almost immediately taken back to triage, where another startling symptom came to light: my blood pressure was sky-high. I have never had high blood pressure in my life, having dealt with the opposite for much of my life. I was then overcome by the need to not go back into the waiting room with all the people in it. I begged the triage nurse not to send me back out there. I cried, I pleaded. I had no rational reason for it; I was far beyond being rational at that point. I just knew I did not have it in me to face that room full of people. I just couldn't do it. The startled nurse called a doctor in, a very kind woman who took me by the hand and told me, "I know you think you're going crazy, but you're not." She gave me 2 Benadryl (the first and only time I've ever been given meds in the triage room) and told me that they'd take me back to a private room right away, and I'd be ok.

If only she'd remained my treating physician!

I was left alone for about 20 minutes, to see if the Benadryl would work. It didn't. A nurse came in, got that information, and went to get the doctor.

By the time H&R arrived, my husband Jonathan was there with me and I was once again crying uncontrollably. I was also feeling very sick to my stomach. My husband helped me to explain what was going on. As soon as he heard "pain," his demeanor completely changed. I'm accustomed to this, but usually the change is skepticism, annoyance, or rarely, pity. But this time, it was more like...fear. Reticence. Maybe even cowardice. I thought perhaps it was the paranoia, but my husband noticed it as well. I didn't much care; as long as he made this nightmare stop, he could be as fraidy-cat as he wanted to be. Besides, I didn't want any pain meds at that point. I just wanted not to go insane.

Over the next few hours, I got an EEG (I have a very minor inherited heart condition) and had some blood taken (which didn't go well; I have very bad veins, and they couldn't get much blood from me before the only vein they could locate collapsed). Before the nurse left, I told her the Benadryl was not working. I was worried that if these symptoms continued for much longer, I would have a serious attack of the trigeminal neuralgia as a result of this tight-jaw business. I asked to see my doctor.

The doctor did not arrive, another nurse did...with a cup. Oh, great. Another drug test! And I wasn't even in there asking for pain meds. I just wanted to be able to stop crying and hiding under the sheets!

I took the test. And asked to see my doctor right away.

Time went by, and the tightening in my chest & jaw became markedly worse. This did not help either my TN or my panic. When next the nurse came to check on me, my husband told her I was in pain and needed help. The Benadryl had not worked. I was getting worse, and the anxiety was overwhelming. The nurse wrote on a dry erase board that my "top concerns" were anxiety, nausea and pain. I asked to see the doctor. Again.

Finally, in comes the doctor. He sees the board and looks like he's going to have a panic attack himself! He seems to be barely able to speak. We talked to him, he murmured. I couldn't understand him; it was like trying to decipher the lyrics of an early R.E.M. song. It's the end of the what as you know it? Well, I don't feel fine!

I told him I felt I needed something for this anxiety, for the nausea, and yes, I now needed something for the dreaded "p" word. He asked me if I had any of my pain medication with me. No, I had left home in a terrible state, and for the first time since I was 14, without a pocketbook. He quite visibly paled. You would have thought I was asking him to remove a thorn from the paw of that tiger who mauled Seigfried. It was then that I put two-and-two together: this was a Hit & Run Doc! Oh, joy. I'm losing my mind, and I have the bastard child of the Cowardly Lion and Speed Racer for a treating physician.

The only semi-effective way of dealing with H&R Docs is to corner them: insist they make a decision, right there and then, that they deal with your symptoms (if you let them go "look something up," or "discuss this with a colleage," you'll probably never see them again). I told him I needed this disaster to be over: NOW. I had done nothing to precipitate this. My pain was not a matter of my having eaten nachos or stood outside in the wind or put on blush. I took a medication that one doctor prescribed, and another ok'd me to take. The reaction was a KNOWN AND NOT UNCOMMON one (I'm still trying to get over that morsel of information). I passed your little drug test, so what exactly is the issue here, H&R???

The problem with backing H&R Docs into that corner is that those doctors with the more advanced form of H&R will always respond in the exact same way: they will lie. To your face. With the guile of the junkie they not-so-secretly fear you are.

This one had it bad. And so he lied, and told me he'd send a nurse in right away with some medication for me. He confirmed that my "top concerns" were anxiety, pain and nausea. He asked me what I "usually take" for a bad TN attack, and what the dosage was. He even wrote it down, the deceitful thing. And off he went!

The nurse came back with something called Cogentin: a medication to end the bad reaction. I asked her if this would address pain or nausea. No. Of course not. I sighed, took the meds, and asked to see H&R, knowing full well the likelyhood of seeing that guy again was about the same as my finding Hoffa buried under the petunias in my backyard.

Time moves on, and I wasn't feeling much better. I told this to the nurse, and asked (again) to see the doctor. Instead, she returned with another dose of the Cogentin. I was not in the least surprised. Tellingly, neither was the nurse. Twenty minutes after that...the panic was gone. I stopped crying. I felt more like myself again! But the damage was done---I was in a full-blown TN attack. When the nurse returned (no H&R! What a shock!), she told me she was "having difficulty locating" H&R. "Anxiety" was removed from the dry-erase board. "Pain and nausea" were all that remained.

By this time, Jonathan had become exasperated, and went home to retrieve my pain meds. I took two Oxycodone, and waited for H&R to reappear. I was very worried about the nausea getting worse, as I had no medications for that save the Reglan, and I sure as hell wasn't about to take THAT stuff again!

We waited. And waited. And waited. The pain subsided. The nausea, thankfully, did not get worse. I got dressed. I just wanted to go home.

And then, some unpleasant news. That tiny little amount of blood they took from me? It clotted. They would have to try again. I refused. I had been stuck now, repeatedly, in both hands. They found one vein, and that obviously was inadequete and in any event, couldn't be used again. I was already bruised, badly, from it. I was gaurenteed site reactions. I was exhausted, I was embarassed by how I had behaved in the triage while under the effects of that bad reaction and I just
wanted to go home. I had had enough.

The nurse argued with me, but it was no use. I wasn't going to budge. I wasn't always that way. Once, I let an ER stick me eleven times, quite literally from my hands to my feet, trying to find blood. They didn't get a drop. I was in agony from site reactions for so long, I went to my doctor to see if there was a cream or home remedy or something I could try to give me some relief. She chewed me out instead. "If they don't find anything in three sticks, they aren't going to find anything," she told me. "Tell them NO. You have the right to do it; exercise it." So I did.

The nurse was seriously unhappy with me. "I wonder if H&R will show up now!" I asked Jonathan.

He did. But not to admonish me over the blood work: I was being discharged. I had underestimated the level of H&R Tin God Syndrome this guy had. It was so bad in him, that even the hint of an argumentative patient was enough to terrify. I had to go.

He never asked me if my pain or my nausea were any better, or worse. Not once.

I don't know which was more stressful: the bad reaction to Reglan, or being subjected to yet another unfortunate "victim" of Tin God Syndrome while having it.




UPDATE: I was given three days of the Cogentin, but it was inadequete. My doctor upped the dosage and I took them for another week. I am, for the most part, fine now. I do have a lasting, low-level anxiety that I can't seem to shake. Two days ago, I went to the clinic and got a prescription for an SSRI to combat it...via yet another new Tin God! I am attracting them like MAGNETS these days. The feast, after the famine. I will share that story soon...








*Please don't send me hate email or comments on this. I am not making light, nor am I showing intolerance of, eating disorders. My aunt has suffered through an eating disorder for decades, and I have seen firsthand the devastation it causes not only to her but to her family as well. My heart goes out to anyone battling an eating disorder, and to their loved ones.
**I am, however, making light of Rock of Love. My heart goes out to anyone who is forced to watch it, and their loved ones. And to the poor soul who does Bret Michael's hair extensions. We're down with
your struggle, buddy.

Tin God Syndrome: The Doomsday Doctor

It has been a long time indeed since I have run into another physician with the dreaded Tin God Syndrome. I attribute this extraordinary good luck to 2 things: the steady and reliable care of Dr. Fetus (my PCP), and the fact that the Methadone has all but kept me out of the ER for TN pain for almost 3 years. As I have learned all too well, nothing brings on the symptoms of Tin God Syndrome in a physician quite like the chronic pain patient. It's like a person with allergies: they are just fine until they get stung by a bee, and then things go horribly wrong.

However, in the last few months I have been in the ER twice, for 2 completely different reasons & ran into 2 completely different Tin Gods: the one you'll read about here now (the Doomsday Doctor), and the one you'll read about above tomorrow (The Hit-and-Run Doc).



TIN GOD SYNDROME:

THE DOOMSDAY DOCTOR

Several months ago, I woke up to stabbing pain in my lower right quadrant. I sighed deeply: not another kidney stone or ovarian cyst! I called the clinic, but no one was available to see me. I was told to go to the ER. I chose to go the one closest to my home. I had never been to this particular hospital before, but I figured, how bad could it be? This was a pretty easy case. Even a second-year

med student could handle it.

I had no idea I was about to run into one of the most traumatic of all Tin Gods: the Doomsday Doctor.

The motives of Doomsdays are difficult to ascertain: what makes a doctor want to take his superior knowledge of every single possible disastrous thing that can happen to the human body and use it to absolutely scare the ever-loving crap out of his patients? Were they not hugged enough as a kid? Are they unhappy that there aren't more emergency-room horror flicks? Are they just one of those people who immediately go worse-case-scenario and like to have company when they do? Or did they get into medicine simply for the chance to be the doctor who gets to tell someone they have some extremely rare and possibly untreatable disease...and they are sorely disappointed that the chance has yet to present itself?

The world may never know.

You can imagine the chaos Doomsdays ensue when they listen to your symptoms, nod wisely, lean in closer...and begin to freakin' terrify you with his honest, earnest, learned opinion that your planter's warts are actually very rare tumors and you may lose a least three fingers, if not the hand! Have a headache? He will muse aloud about aneurysms and how sad it is that your age group is statistically more likely to die while having them repaired. Got a sore throat? He will start writing down the phone number of his golf buddy, the specialist in cancers of the larynx, before you even have the chance to pop a cough drop. Doomsdays are incapable of keeping their apocalyptic thoughts to themselves: they must share them with you. Damn it, they are pretty sure they are even ethically BOUND to share them with you! And share them they will....in graphic detail. Whether you want them to or not.

I went into the ER expecting to have to take a urine test, get some blood work, have an ultrasound done, get a prescription and go home. I've been through it far more times than I'd ever care to count since I got MS. Most of the time, it's a pretty simple and straightforward matter, and rarely takes a whole lot of time. I know the drill, and know it well.

This was not going to be one of those simple, straightforward times.

I was sent back into a room fairly quickly, and the doctor came in almost right away (which in itself should have sent off warning signals). Like most Doomsdays, he seemed perfectly normal during this first interview. He nodded a lot, gave me a long and unnecessary speech about the common nature of urinary symptoms in multiple sclerosis (yeah, I noticed that about a decade or so ago, thanks) and told me he'd order some tests, then retrieved a cup from a cabinet for me to tinkle in. As I said, he seemed perfectly normal, lulling me into a false sense of security that this was, in fact, a doctor uninfected with any form of Tin God Syndrome. The only thing I noticed that was a bit off was that he not only didn't have my chart with him, he didn't have ANYTHING with him. No papers, no clipboard. I've never seen a doctor do that before, but hey, maybe he just has a really great memory?

He left, and I took the beforementioned urine test. Even my untrained eye could see the blood in the urine. The nurse also noticed it right away, and gave me a look of sympathy. She took it away, and about fifteen minutes later, came back and told me there was in fact blood, as well as signs of dehydration. It was time for the blood work, with the added bother of getting an IV put in for some fluids. Again, this is a drill I am quite familiar with. A half hour or so later, a woman came in with the ultrasound machine. So far, so good.

And then...I was completely ignored for over four hours. No nurse came to check on me. There was no sign of the doctor. Maybe my chart was lost (which would explain why the doc didn't have it), and now they've forgotten me? The bag of fluid was almost empty. I had been in a good amount of pain---not to mention a considerable amount of nausea---for a damn long time. I felt woozy, sick to my stomach and tired of feeling like I was urinating flames. And to make matters worse, I'd been put in a room with no television, and I'd left home without a book (which is a rookie mistake, and I should know better). Then to rub salt in the wound, I could just barely hear the TV in the room next to me...and they were watching a Washington pow wow! Unfair, unfair.

Another hour came and went. An orderly came in at one point, looking for someone, and I practically begged him to find my nurse. I had attempted to do so myself, but was unsuccessful. Every time I pushed the 'call nurse' button, a woman told me she'd 'find my nurse,' and apparently the search party was still out. I wasn't sure if it was a bad thing to be hooked up to a bone-dry IV, but it was pretty clear that if my nurse didn't make an appearance soon, I was gonna find out.
FINALLY, my nurse arrived, apologizing that they had been very busy and short-handed. She put yet another bag on the IV (how long did they plan to keep me here?) and also came with injectables: pain & nausea. I was shocked. I hadn't asked for anything for pain, only for the nausea. This was a first for me! I've never been given pain meds without asking for them; without begging for them 90% of the time. I wanted to be grateful...but something seemed wrong. The feeling was much stronger when I found out I was being given Morphine...and a pretty hefty amount of it to boot. I asked the nurse why; after all, I had not asked for pain meds. No one had asked me what level my pain was on either the 1-5 or 1-10 scale. So why was I being given so much Morphine? Why was I being given another bag of fluid? She told me the doctor would be in to see me soon, and rushed out.

I was, at this point, feeling very uneasy. This was all very weird. Very wrong.

I was then left alone for YET ANOTHER HOUR! I was no longer in pain, no longer felt like I was urinating fire and no longer wanted to leggo my Eggo. What I was, was scared. What was going on? Why would no one tell me?

I began to panic. I called my husband...who had begun to get pissed off. Why was a routine, MS-patient urinary problem taking almost seven hours to resolve? Why were my questions ignored? He was on his way.

While on the phone with him, the doctor came back. He had a grave look on his face. It was not unlike the look the Well-Accessoried Doctor gave me when she told me my MS had gone progressive. I felt a pit of fear in my stomach. And some curiosity, as once again...there was no chart, no papers, nada.

He asked me to sit down, and then he took a seat as well. He looked at the ground for a minute or two, sighed heavily, and then looked me in the eye. Here's how the conversation went:

DR.: "I'm afraid the tests didn't show anything."
ME: "What do you mean?"
DR.: "No kidney stones, gall stones, ovarian cysts or UTI."
ME: "I don't have a gall bladder."
DR.: (startled) "Excuse me?"
ME: "My gall bladder was removed in 1997."
DR.: "Well. That explains the lack of gall stones."

He said this with complete seriousness. I just stared at him.

ME: "Why did I have blood in my urine?"
DR.: "You didn't."
ME: (confused) "I saw it. The nurse then TOLD me I had blood in my urine."
DR.: Well, I'm afraid the tests didn't show anything.
ME: "So what's wrong?"
DR.: "Well, I think you should go and see your doctor right away."
ME: (startled) "Why?"
DR.: (sighing) "We don't have the ability to test for...certain things, here. Not at the moment. This is why I must STRONGLY URGE you to see your doctor right away."
ME: "How soon is right away?"
DR.: "I'm afraid you really need to be seen as soon as possible."
ME: "What do I tell Dr. Fetus? I need to tell him what to test for. I can't just go in there and tell him I needed to be seen right away for some unknown, random test."
DR.: (looks at the ground again for another minute or two) "I'm sorry, but there is some indication of the possibility of a large mass on your cervix."

I stared at him in some shock. It was one of those moments, when time seems to stop. I doubt the very large amount of Morphine in my bloodstream helped with that much.

ME: "A large mass?"
DR.: "It's important you understand, we do not have the ability to perform certain tests at this hospital, at the moment. You need to see Dr. Fetus."
ME: "Are you saying I might have cancer?"
DR.: "That's not what I'm saying at all. We would need more tests, and for that, you'll have to go to Dr. Fetus."
ME: "What tests do I have to have done?"
DR.: "That will be between you and Dr. Fetus."

Doomsday then stands up, dusts off some imaginary specks of dirt from his lab coat, looks at the ground for another few moments, and then looks back up at me.

DR.: "I wish you the best of luck, ma'am."

He said that with extraordinary gravity, the same way someone does when they let you know your dog has just been hit by a car. He then turns to walk away.

ME: "Wait a minute, wait a minute. You're scaring me. My mom died of breast cancer when she was just 44, and my grandmother died of uterine cancer at 46. Both of them fought cancer for years before they died. You need to tell me: is there a chance this mass is cancer?"
DR.: "I can't tell you that. Although I can say, with your particular family history, it is absolutely essential you see your regular doctor right away. Do you understand, Mrs. Zen? Do you understand?"
ME: "Yes, I understand. What I don't understand is this: if I don't have a UTI or kidney stone, or ovarian cyst, what is causing my symptoms? Why am I in so much pain and having so much nausea, and urinary symptoms? Could this mass cause all that?"
DR.: "Well, that's not likely but not impossible. However, with the blood in your urine, it is possible that you've got a UTI and you are in the early stages, and therefore, it isn't showing up in the tests just yet."
ME: "Wait a minute, I thought you said I didn't have blood in my urine?"
DR.: "The nurse found some blood, very small trace amounts, not enough to indicate a UTI or kidney stone. A very negligable amount."

He starts to walk to the door, thinks twice, and comes to sit down in front of me again and takes my hand.

DR.: "I need you to understand that you need to follow up with your regular doctor immediately, within the next three days at the very most. You are in need of more specialized testing and care than we are qualified to provide you in the ER. Do you understand, Mrs. Zen?"
ME: (scared almost to the point of tears) "Yes, I understand."
DR.: "Excellent! I wish you the best of luck, Mrs. Zen. The nurse will be in in a few moments to remove the IV and give you your discharge instructions. Have a good day."

Doomsday then very abruptly leaves the room.

A few minutes later, my husband Jonathan arrives. As I tell him the story, I burst into tears and start shaking all over. Jonathan is wary. He doesn't trust this Dr. Doomsday. I don't know what to believe, and the Morphine for sure isn't helping there.

Twenty minutes go by, and my husband is now super-pissed. He tracks down my nurse and tells her that Doomsday told us to see our regular doctor right away, and we aren't going to be able to do that if we don't get out of that hospital NOW.

The fire he lit under her must have burned, burned, burned...because she showed up with a quickness. And with her: my discharge papers and yet ANOTHER shot of Morphine! She gives it to me, telling me that Doomsday ordered it, and telling me this in a tone of voice that conveys that this order was not an option, and if I'm smart...I'll take the drugs and be quiet about it. Jonathan is shocked at the amount: it is again another healthy dosage.

My IV out, and papers in hand (with the ominous-sounding diagnosis of "needs further investigation"), we leave the hospital. I have been there, at that point, for damn near eight hours.

We drive, at my husband's insistence, straight to Dr. Fetus' office. We go into the clinic, and I sit down (the Morphine has kicked in and I am feeling less than steady on my feet) and Jonathan goes to tell the receptionist what has occured. I see the look of surprise on her face, and in less than five minutes, we are shown back to a room.

Dr. Fetus is not in...I am seeing another of the clinic's doctors, Dr. Waitawhile; so named because he is quite firmly of the wait-and-see-maybe-it-will-resolve-itself school of thought.

We tell him what happened at the ER, and show him the papers. He looks at us in ever-increasing amounts of ill-concealed shock as the tale unfolds. He is especially confused as to what "tests" Doomsday thought the clinic could provide that the hospital could not, and why he wouldn't tell me what those tests were. I didn't know, because despite my repeatedly asking Doomsday, I never did get an answer.

Dr. Waitawhile went right into action. He ordered another urine test, and gave me a pelvic exam. He then went off to request the chart from Doomsday. I'm not even sure there IS one, as I never saw it the whole eight hours I was there.

We were waiting a good twenty minutes before Dr. Waitawhile returned, with a puzzled look on his face. "This is the weirdest case I think I have ever been involved in," he told me. Apparently, it was proving very difficult to get the records. Usually, it was just a matter of requesting them, then getting a fax. But he was being given the run-around, and he didn't understand why. When he finally DID get something, all he got was the results of the blood and urine tests. Nothing from the ultrasound, no doctor's notes, nothing. He then talked to both the nurse and Doomsday...and got completely different stories! The nurse said there was blood in my urine. The doctor said there wasn't. Doomsday also refused to either confirm or deny that he told me about any "mass."

I sat in utter shock. What on Earth was going on here?

On the plus side: the urine test came back with no blood. When I told Dr. Waitawhile that I had seen the blood in the original urine test with my own two eyes, he told me it was possible there had been small trace amounts of blood in the urine at that time, but that it wasn't detectable in the sample I had provided in the clinic. That suggests no UTI, but doesn't rule out stones (which could have made me have blood earlier but none now) or ovarian cysts. He then went to check on another patient, and we waited.

I was so nervous, it felt like hours before Dr. Waitawhile returned. The puzzled look was gone from his face. In its place, was irritation.

He told me that he had, after several calls and a great deal of aggrivation, received the full records. Or at least, he assumed they were the full records: there were very little nurse or doctor's notes, and it looked as if several pages were not transmitted to him. He called it "bizarre."

The verdict was in: there was no mass on my cervix. In fact, Dr. Waitawhile told me, with the sort of ultrasound that was ordered (and performed), it would be impossible to detect a mass on my cervix. For that, I would need the same exact test Dr. Waitawhile administered: a pelvic exam. Apparently, the cervix reacts in a certain way, when touched, if there is a mass. Mine didn't. He was also quite angry that I had been told that the ER could not perform "the kind of test" I needed to determine that: what ER couldn't give pelvic exams? No ER he had ever heard of. I was in agreeance on that; I've had pelvics in ERs before. I've never heard of an ER that couldn't or wouldn't perform that service. What kind of hospital was this that I had spent my day in?

And to top it all off, something other than a cervical mass DID appear on that ultrasound, despite Doomsday's insistence that the tests had shown "nothing": three ovarian cysts. These were probably the case of my pain and other symptoms. And the now-you-see-it-now-you-don't bloody urine indicated that there might be a kidney stone that wasn't showing up on the scan. I have a tilted uterus (TMI, huh?) that does often interfere with ultrasounds, a problem that was very bothersome during my pregnancies. Dr. Waitawhile gave me a prescription for nausea meds and pain relief, with the instruction (of course!) to "wait it out" and if I started having any more blood in my urine or more severe pain, to come back to see him, see Dr. Fetus...or go to any other ER in town.

In the end, it did turn out that I had a kidney stone as well as the three ovarian cysts. And those doctor's notes and other missing pages? They never did materialize.

I made a complaint with the hospital, and with the med board. This guy was the worst sort of cruel, comparable only to my experience with Caligula. No doctor should scare patients like this. I still don't understand exactly what happened, and I don't think I will ever get just why this guy chose to do what he did to me.

I do know, I won't ever forget it.

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....

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.

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!

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....

Tin God Syndrome: Caligula, the Ongoing Saga

Well, I have yet to hear back from the patient representative regarding my complaints about Caligula. I'll give her one more day, and then I'm calling again.

But that doesn't mean I haven't heard from Caligula himself.

Yesterday, I went to my doctor's office to be seen after my recent trip to the ER and run-in with that bastard Caligula. Now, my regular doctor isn't a bad sort. She's kind of young, but she's compassionate and willing to listen to the patient. There's a lot to be said for that.

Anyhoo, she asks me about the ER visit and I tell her all about my two run-ins with Caligula, and how awful he was. When I told her about him shaking my head and tapping my face, she was appalled. She immediately went to look for the ER report.

I could tell right away that said report wasn't good news. She had that unfortunate look on her face that people get when they are deciding whether or not to let you know you have spinach in your teeth and it was there the whole time you were talking to your boss/mother-in-law/cute bartender.

First, she tells me that according to the records from the first ER visit, Caligula did an actual physical examination for twenty-two minutes. The recommended exam for trigeminal neuralgia takes about two minutes. Secondly, he DID indeed call other hospitals to see if I had been there recently for medication, forcing me to wait in pain while he did so. His notes also indicated that he believed I was drug-seeking.

At this time, I told my doctor that Caligula never once asked for a drug test; in accordance with my pain management contract, had he asked me, I would have given him one. Just like the other dozen or so I've taken over the last few years, it would have been clean.

I can see, however, that this is NOT the bad news she's so reluctant to share. That morsel was on the second ER report.

On THIS report, the majority of his comments had more to do with my haircut, tattoos and nose ring than with my physical condition. But worse, his notes indicated that as it was the second trip in a month, in his view I was in fact drug-seeking. To bolster this belief, he added for "proof" that my left hand appeared to be burned in a manner that was consistant with a crack pipe.

A CRACK PIPE.

It took me a moment to recover from the shock of this. As I was trying to gather my thoughts, my doctor let me know in no uncertain terms that she was writing a report of her own, to be attached to the ER report, stating unequivacably that she had treated the burn within 12 hours of its occurance and it was NOT consistant with a pipe burn, but was clearly and without doubt a liquid scalding. Also, her report would include the fact that I have had numerous drug tests, and not a single one has ever shown any illegal drug use. Not to mention the fact that I have never exceeded my alloted amount of medication, did not even seek stronger medication for the first six years of my condition, and have repeatedly refused narcotics in favor of non-narcotic medicines like Torradol.

To say that I am offended and horrified by Caligula's oral diarrhea is putting it mildly. This utter bull feces is on my medical record. I, a person with a well-documented and diagnosed chronic pain disorder, have been accused of being a crackhead. A clumsy crackhead.

I've called my lawyer for advice. I'm also in the process of drafting letters to the medical board and the hospital review board. This time, Caligula's gone way too far.