Chronic Tonic at VOTS- Confessions Of A Difficult Patient

Almost four years ago a group of people got together at Daily Kos and formed a weekly series called Chronic Tonic. It was a place to share stories, advice and information and connect with others with chronic conditions and those who care for them. Sometime near the start of this year the series went dormant. That was a shame.

Here's the thing--it was Chronic Tonic and you know these things can go dormant for a while, but you never know where or when they will pop up again. Turns out, it's here and now. By way of introduction I will start the same way here as I started there, with my story and the first post I ever wrote way back in January of 2009...

Hi my name is triv33 and I am a difficult patient. I didn't start out that way. It was never a goal. If you ask anyone who knows me they would tell you I've always been a tad on the subversive side, cynical as hell, the first to question authority, with one exception, the doctor's office. Like most people I admired and respected my kindly family doctor. When I was twelve and I first started to get migraines, he sent me to my first neurologist. After a bunch of tests to rule out the really bad stuff they put me on medication. The headaches were under control. Thank you Doctor Miraculous!

When I was seventeen, the headaches came back with a vengeance. Back to the doctor I went. He sent me to a new neurologist, who seemed vaguely disappointed with me. He seemed to think my headaches were "stress" related.
The headaches were not so cooperative this time around. They suggested I try to remove the stress. In October of that year I dropped a History class that Coincided with the start time of the headaches. More drugs, lots of them. In November I quit school. I had a night shift job. I made good money. In six months the headaches were back under control. I never questioned the doctors. Why would I? They knew what they were doing.

When I was twenty-two the headaches came back to stay. Intractable migraine/cluster combination.

It still took me more than ten years to become really difficult. Ten years of jumping through hoops going from specialist to specialist, trying alternative therapies, racking up more ailments and watching my life go to hell. Ten years of buying whatever any joker with a diploma on his wall was selling and getting sicker by the day.

One night, shortly before I was going to enter a "big" headache clinic in the city I was laying in bed watching a Bill Hicks special on T.V. and the man said something that resonated with me.

"I don't mean to sound bitter, cold, or cruel, but I am, so that's how it comes out."

Those became words to live by. I was bitter and my new doctor and the staff at the headache clinic were about to find that out.

When you enter the clinic, you leave your pain meds behind you. You need a clean slate for infusion therapy. The nurse asked me if I needed a Phenobarbital to take the edge off. "Edge?" I say. She then very patronizingly explains how I might feel uncomfortable without my meds. When I tell her I kicked the opioid analgesic nasal spray and the pills the weekend before she is genuinely horrified, " can't do that!" She's almost beside herself. "You'd like to believe that, yet here I am." and so it began.

First thing they made me do was take a depression index and the MMPI. Having satisfied themselves that I was not a malingerer and no more depressed than the situation warranted they saw fit to treat me.

The drug they dripped into my veins burned like battery acid and sent my blood pressure sky high. I could have taken that if it had worked but it didn't. That didn't stop them from hanging the next bag at the appointed hour. I complained, bitterly. I told them to keep Nurse Shaky Hands away from my hep-cap. I had blown through two of them and even though I knew it was my own crap veins, I blamed her.

I learned many things that week.

I learned how to get rid of Nurse Shaky Hands. They changed my drip over to a steroid without telling me. It made me do an involuntary herky-jerky in my bed which really freaked me out. Nurse Shaky Hands breezed in, took a look at me and said, "Oh, don't worry, Hon, the Benadryl will kick in and stop that in a minute." I blew a gasket. She really should have told me first.

I learned I could make a resident blush. He came to discuss my depression index and MMPI while my sister was there. He asked if maybe I'd rather he came back at a better time. "No, no, please, there's nothing in there you could reveal that my sister doesn't already believe far, far worse." I then proceeded to hector him over the fact that I felt it unfair that I was asked to take a depression index when it didn't take into account that I had been living in agonizing pain for years. Wasn't it the exact same depression index that they give to people with no pain? Dirty pool.

I learned I could derail a group therapy session in five minutes flat. I listened as one of the others told how a migraine spoiled going to a big business dinner with her husband. My eyes narrowed and I looked around suspiciously, "Is anyone else here intractable? No?" The therapist said something about everyone there having problem headaches to which I rolled my eyes, sucked my teeth and let out a huff. A stilted and uncomfortable session followed. I was not invited back.

I learned how to handle a showdown. My doctor made his way to my room to see me. We had a little back and forth, blah, blah, blah and then he asked THE QUESTION: "Don't you want to get better?" Oh, I went off.

"For Christsakes, what the fuck do you think I'm doing here? I know I haven't been a model patient but this hasn't exactly been a delight for me either. Don't forget this isn’t my first time at the rodeo. You're like my fourth or fifth neurologist. I've been from pillar to post to try to find something, anything that would help me. I’ve been made to jump through all sorts of hoops to prove I wanted needed and deserved treatment only to wind up with shit time and time again. I've been treated like a malingerer, a head case a hysterical woman and a drug seeker. I've been told it's psychosomatic, it's stress, it's vascular, no, wait, its hormones! You get migraines because you're depressed. No, jackass, I'm depressed because I've been in agonizing pain forever and nothing and nobody is helping me! You're atypical, you're combination, and you’re intractable! Is that me or the headaches? I'm not sure anymore. I've lost jobs, friends and I'm about to lose my marriage. My husband treats me like a lemon, I looked great in the showroom but I sure was problematic once he got me home. Since this started I've been diagnosed with IBS, CFS and I'm pretty sure I've got fibromyalgia. I had the option to go down to Virginia to a pain management clinic but that pretty much amounted to becoming a controlled drug addict so I decided to come here. What do you think?"

He told me he believed I desperately wanted to get better. He told me he didn't know what was causing my headaches or if he could help me but that he would like to try, and for nearly two years he did.

The clinic was all about the protocol. My doctor told me that they were helping up to 80% of people who hadn't found help before. Unfortunately, I was not in that 80%. For eleven brutal, pain filled months I followed the protocol. No over the counter or prescription nsaids. No narcotics. I had some schizophrenia drug they used "off-label" for pain that was absolutely worthless to me. If you don't fit the protocol they try to make you fit. The clinic claimed the reason the protocol wasn't working was that I was probably still suffering "rebound" headache. I was scheduled for another week of infusion therapy.

This time I was not as disagreeable as the first time, still, I didn't last the week. The drugs clearly were not working. My doctor released me a day early. On my follow-up visit he told me he was leaving the clinic for another area of the hospital but that he would like to keep me and a few other patients that did not fit the protocol. I asked him what that meant. Well, it meant no more needless suffering. Some people do not fit the protocol, and its nonsense to keep trying to refine a drug program for people who don't respond well to it. For some reason, some signal was misfiring in my head and no amount of following the protocol would stop that. Oh sweet relief, good drugs!

Neither of us was long for the clinic after that. He lasted eight months. He told me he was leaving to get into research, and that he had to hand my case over to another doctor at the clinic. He told me I was the toughest nut he had ever tried to crack.  Well, shit. I wished him well. As I was leaving he said, "By the way, did I tell you a friend of mine, a guy I went to school with, just joined a neurology practice up in your neck of the woods. Name's _, good man." He knew what I was in for.

My next visit to the clinic was my last. A man shaped piece of arrogance in a white coat walked in, glanced at my records and sniffed, dismissively, "I'm not going to treat you like ___ treated you, we're going to start from scratch, with infusion." I said, "We are like hell." Got up and walked out. The shock on his face was comical. They didn't want to give them up, but I left there, records in hand, that day.

I went to see my ex doctor's friend. I told him I was a difficult patient. I gave him my records and with the caveat that I objected to the nurses' use of the phrase "patient claims" as I found it kind of bitchy, as if I were telling them something that wasn't true, but other than that, have at it. When I went back for a follow-up he told me that he had hoped to offer me some new treatment, but after looking at my records my old doctor had done everything he would have done and more. My family doctor could maintain my current treatment plan. It was a shame but all the rage now was triptans and not much else was going on but refinements in that area. But, come on back when they come up with something new, he would like to work with me.

That was ten years ago. I won't lie to you. I bottomed out for a while. I did, indeed, have fibromyalgia. I got myself over medicated. I got back on the nasal spray. I spent days at a time in bed. I finally got disability. My then husband started his own better living through chemistry experiments and the whole situation became untenable. Late in 2001 I stuffed what I could into two Hefty bags and ran for my life.

Once you run for your life, what do you do with it? Try to figure some things out. There's a life worth living if you want it. I decided that I wanted it.

Some things there are no good answers for. Why me? I don't know, why not me? Am I still in pain? Yes. Every day. Sometimes it's better and sometimes it's worse but it is never, ever gone. When it's better, I can feel almost giddy and I tend to over-do, but it doesn't last. When a cluster hits it can be damn near unbearable but I know this can't last either.

As far as doctors go, I found a good one. She doesn't mind that I'm difficult. She thinks I'm a riot. We worked together on a treatment plan. I told her I needed to balance pain control with my desire for remaining functional. No more opioids, please, they are hell to kick. I take an anti-seizure medication as a prophylactic every day and butalbital for three weeks of the month. This prevents me from building a tolerance and ever getting close to the dose I used to take. It's not perfect, but I can live with it.

Oh, yeah, did I mention I've got a husband and two kids now? I married a bass player. Yup, migraine girl married a bass player in a rock and roll band. Nobody saw that one coming. I explained exactly what he'd be getting himself into and he was still game. We have two miracle boys (I was told I couldn't have children, but that's another story), ages six and four. Is it easy? No, but what in the hell in this life that's worth a damn ever is?





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Me too regarding

shaharazade's picture

fragrances or aromatherapy or even certain natural ingredients in soaps, candles or lotions. Lavender real and mild  does seem to calm my skin  One of my chronic conditions is eczema. My skin goes nuts with anything that's scented or strong. For years I went to dermatologist 's who prescribed really strong cortisone i topically or  sometimes injections.  It only worked for short time relief and seemed to just encourage outbreaks along  with freaking acne because steroids invite infections. I finally went  to a woman dermatologist in San Francisco who asked me if anyone in my family had asthma. My mom did and she explained that my eczema was similar it was an inflammatory reaction. She said it would flare up in season changes and would be triggered by wool or polyesters any clothing that did not allow air in. She recommended loose cotton clothes and to not eat acidic inflammatory food like the nightshade family or citrus. Lot's of veggies which help alkalize the system. I also think it was hormonal as over the years it has simmered down and only happens once in a while.

It's hard to find an AMA doctor that  is also a healer  who is able to treat you with common sense these days. It seems to me that medicine/healing is an art as well as science. Most doctors scoff at herbal medicine which has been around for as long as humans.  Mind body spirit is what we're made of and chronic conditions are more complex then most modern medicine is willing to admit. They also do not recognize the patients ability to be part of the process of regaining balance and health. Not once in my years of dealing with specialists for any chronic pain or condition has any modern western  doctor asked me about diet or even tried  to figure out what was causing my body to react so extremely.

Dr. Wong my herbalist acupuncturist Chines doctor when I first went to her asked me alot of questions that were personal and drew me into the process. She asked about what I had been doing when my panic attacks started and how my body was feeling. What I had eaten or drank medications I was taking. We're you around toxins? Do you feel hot or cold pain? Where does your pain/ panic start in your body?  When you are thirsty do you want cold or hot beverages? I was not just a collection of diagnosis via machines  like a car that was not running right. Chinese medicine is ancient and valid. Especially regarding pain acupuncture is very good at rerouting the nervous system and it's herbal medicine has cured both me and Shahayar with an herbal connoction  of as Dr. Wong calls them 'little bugs', that are resistant to antibiotics and flu shots. 

As for expense, I'm uninsured and a visit to Dr. Wong is 130 dollars, herbal medicine included. The last time I went to the ER for an infected ankle wound from gardening it cost 900$. When the nurse practitioner who treated me asked for me about my doctor I told her about Dr. Wong. I said with something like this I figure I need western medicine. Her reply was 'Oh I don't know she probably has something in her cupboard that would suck this fucker right out.' .

So if your problem is pain from nerves to bones to headaches  you might try to find a real Chinese practitioner, they  seem to over the centuries have a  handle on these types of systemic human suffering . The ER nurse practitioner asked me for Dr. Wong's number. I said I need to find a western doctor who's decent she said "If you do call me and give me their name.  

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fibromyalgia and osteoarthritis here...

poligirl's picture

invisible illnesses... they suck... it took a long time for my sister and my pop to grasp how bad i can feel without looking bad - i still think they don't totally get it... my ma and bro got it cuz they are bipolar and that was easier to accept cuz it's i don't more mainstream....?

my road to diagnosis was a long and painful one, a lot like yours triv - multiple docs, batteries of tests, a host of medicine combos, loss of some friendships, and just feeling tired and shitty all the time... maybe i'll write about it for a column here.

the osteo is a more recent development, but i have it about 25-30 years earlier than most folks get it. already have titanium screws in one joint. yay. not.

don't have insurance anymore, so i make due with a few OTC fill ins and it's workable for the time being. also helps that my job is on the less high maintenance side of things and is right next to my house.

but boy invisibles suck. big time suck.

a great first post for a great series i am glad is being resurrected.  :D

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Thanks for reposting that, brave triv

geomoo's picture

I'd put you right up there with brave Sir Robin, what you have endured.  I did not see that when you first posted it.

First of all, I thought you said once that you couldn't write?  What was that?  Wow.  Delightful for all the horror.  Thanks for that.

Tame story here, but I got a small small taste of it.  I was sick with Lyme for maybe six weeks.  First of all, impossible to describe symptoms.  I learned that, for me at least, after a certain level of bad, and foggy mind and no sleep to boot, I didn't know my symptoms.  I knew that I felt terrible everywhere all the time in many different ways.  And I could only issue a plea--please, please relieve me from this pain.  Antibiotics worked almost immediately (I had Lyme with a classic visible bite in an area with endemic Lyme, especially that year, and it took 6 weeks and 3 visits to the doctor to get them.  As I say, I only went back the third time to beg him, even though I had zero expectation that he would help me.

My headaches were especially noticeable at night, when I lay in bed dog tired and unable to sleep, the pain more prominent in the absence of other stimuli during the day.  That's when I felt the headaches.  I'm sure they weren't even in the same class as cluster or migraine.  I don't see how people function.  Sometimes, it just feels like going through the motions.  That's when character shows.  That's why we love people like triv, and Dave, and NYBrit.

Thanks for reviving this series. I hope someone contacted others who may want to be here.

Anyway, a few months later I did gradually increasing heavy-duty herbals until I made my sense of taste turn everything bitter, so much so that I lost fifteen pounds in no time.  End of herbal remedy, but I may have done some damage to those little spirochetes.  Then a couple of years later, I got a tick bite, this time in the west.  We noticed it immediately, because it had an inflamed response very much like the first bite.  We pulled the tick off.  I knew that, even if my immune system weren't already full of antibodies, we got it before I could become infected.  Suddenly, I freaked out--don't know any other way to describe it.  The facts didn't matter.  I knew, from having been tested, that those little bastards were still moving around in my body, wherever they wanted to go.  It's a crap shoot when you may go blind or worse.  Anyway, I stumbled over to the bed, laydown on my stomach with a pillow over my head.  "I can't take this."  It was the amygdala, it remembered on an intense emotional level the horror of my six weeks of misery and confusion.

I went to a doctor who specializes in Lyme, i.e., faces the disrespect of his profession by taking Lyme seriously.  He fixed me up real good, treated a lot of things.  Nobody knows what to do, but I took the antibiotic for several months--not fun, but no biggie for me.  I'm making up my own regimen.  I'm going to clear my body of the things this doctor, who has quackish qualities, has put in them, do all the tests again once my body is clear, and see if anything got fixed that stayed fixed.  That way, I hope to start back up with a lot fewer pills.  They aren't pharmaceuticals, they're like naturopath medicine, amino acids and specific molecules.  It worked wonders for me.  I mean, I think I was symptom-free, except for lethargy, but I freaked out so much I got treatment anyway, and it did make me feel a lot better.

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My daughter in law just found a doctor--it made her cry

geomoo's picture

She has been sick for probably four months.  She is a very high-energy person, compulsively so, and that makes it doubly difficult to see her lying around, not being funny and getting things done.  No clue what it is.  Failed all the tests.  Not that.  Not that.  Then after a while, probably not that either.

I'm reporting this third-hand, but this doctor says, "I know what you're going through.  You're experiencing the worst of the medical system.  I'm going to try to help you.  I'll talk to you at least once a week, I'll follow what is happening with you, I'll try to help you find out what this is.  You can call me any time.  I'll treat this seriously."

My d-i-l burst into tears of relief.  This woman goes and hugs her.  What a relief, even if she can't work magic.  Knowing that they are actually motivated to help you is a good starting point.

Triv, your story is so inspiring.  I wish I could learn to be tougher like that.  You know, the longevity studies show that the bad patients are more likely to improve.

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Sorry I missed this evening.

UnaSpenser's picture

I'm still in a nightmare treatment experience. Probably until 6am. Nurses came at 4pm. 14 hour treatment. And total chaos for about 5 of those. Hope to be able to write about it, but too damned exhausted right now.

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Hang in there

geomoo's picture

I'll check back in later.  I'm sure others will, too.  Comment sections move slowly here.

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aigeanta's picture

It all started in the fall of 2011. I had what I thought was a bad pimple on my back and tried to pop it, but that didn't really work. The middle of my back got very red and sore and infected, but lacking health insurance and not desiring an enormous hospital bill to once again mar my credit report, I declined to receive medical attention, and self-treated. The tea tree oil I used seemed to help expel some infected tissue and I was left with a crater-sized scar in the middle of my back, and that was the end of it. Or so I'd thought.

It was the day before Christmas Eve and my chin was exploding. I had what felt like a golf ball embedded under my skin, yet another infected abscess, and it hurt like hell. This time there was no avoiding the emergency room; I needed to get it lanced and have some heavy duty antibiotics prescribed. I went to my school's medical facility, and luckily the place was empty so I was seen almost right away. The ER doctor tried to drain the wound but it really had nothing to give but blood. I was swabbed so they could test me for community-acquired MRSA and told that the football team at my school had suffered from an outbreak. It dawned on me then that I had been attending a yoga class with a bunch of footballers all year, and perhaps I had acquired it from the contact with dirty mats that sometimes occured in the course of stretching, especially since the outbreak showed up first on my back. I had my mom pick up my daughter and drive her because I was on too much pain medication, and the next day as I drove to her house between doses I was rear-ended while heading down 19th Avenue through San Francisco. That was Christmas Eve.

It was Spring. My Dutch boyfriend had just arrived from overseas to meet me for the first time in person. Everything was going extremely well and then all of a sudden, I got another damned abscess, only this time it showed up in a very uncomfortable, intimate place. I was mortified. I had hoped the antibiotics I had taken the last time would have wiped out the MRSA, but it had returned with a vengeance. At least this time I had qualified for Medi-Cal, and had the previous bill covered retroactively, so I had no hesitation to return to the Emergency Room and perhaps seek a specialist. Driving to the ER, in incredible pain, was my only option because my boyfriend didn't have a driver's license. But first I had head across town to drop my daughter off at daycare and then head all the way back, cursing and avoiding sitting on the excrutiating globe that was burning in my groin.

We made it to the hospital in one piece, but after uncomfortably sitting in the university hospital's waiting room for almost eight hours with absolutely no pain management, I felt like a far more traumatized person than the one who had hobbled into the establishment. Finally we were led to a treatment room and I carefully explained my previous history with MRSA abscesses to the attending physician. She brought in some residents to see my anomalous wound, and after consulting, they decided I had some kind of obscure cyst in a gland that would require a special kind of catheter to drain for weeks, one which they did not have on hand at the hospital and whose installation would require a follow-up urgent visit tomorrow at the OBGYN specialist upstairs. I was completely and utterly horrified, especially that this was all happening while my boyfriend was visiting my country and we were trying to enjoy our time together, so to speak. The only redeeming factor was that he got to see, first-hand, how Americans practice medicine in the richest country in the world. He was not impressed.

I was told the clinic would be given information about my malady and encouraged to call first thing in the morning. So I did. Only they had no clue about my case or what I was talking about. However, I managed to convince them to make me an urgent same-day appointment, and was seen within hours. Once inside, we were ushered to a treatment room and my boyfriend was encouraged to not view the procedure. However, once the doctor was able to actually examine the location, she discovered that it was just another garden-variety skin abscess, probably MRSA, and lanced the horrible pocket. My boyfriend became my nurse, packing the wound and helping me heal. He was great. I was mostly back to normal in no time. The doctor referred me to an infectious diseases specialist so that I could finally take the regimen of antibiotic treatments that would cure me of the MRSA colony that was plaguing me. I tried making an appointment, but because my Medi-Cal got switched to a county administered plan, I needed to see one of their doctors and get referred to another specialist, probably in a different hospital. I had almost no gas left but we made the trip, sat in a clinic in a portable building to see a doctor who listened to my story and then said she'd give me a referral, but then left the room and never came back, and everyone left for lunch in a back room. I left and tried to call around to figure out how I could get treatment. How could it be that such a highly infectious, intractable, anti-biotic resistant disease that costs the state so much money would be ignored and never properly treated, causing a lot of pain and suffering, and nobody was even being alerted that they might have been exposed?

Then the summer came and we had to move because my rent kept getting raised and I hadn't been able to find steady work. My boyfriend flew back out and packed us all up and loaded my earthly possessions into containers. We moved in with my parents and caught colds. The next week I started getting another abscess on my posterior, so I went to a local urgent care clinic and told them the whole story, including the fact that I had been diagnosed with MRSA before and that I needed access to the proper regimen for cleaning my skin and nasal passages of the resistant colonies. I actually knew what to ask for because I had done my research online and found out what I would have been given if I could have made it to a specialist. This time I got prescribed a different, stronger antibiotic, an antibacterial salve to swab inside my nostrils, and a recommendation for an over-the-counter sanitizing rinse with which I was to bathe from head to toe. It was especially stressed that my family use the same cleaning regimen, and that all our clothing and bedding be cleaned frequently and the bathroom be especially sanitized. We complied.

However, the regimen was apparently started too late for my boyfriend because he ended up in the clinic with the same diagnosis as I got: a big pain in the butt. He had a great sense of humor about the whole thing, except for the times I accidentally ripped the tape and bandaging off and unintentionally waxed the area. Good times.

In July we eloped in Reno. He's had to return to his country since then for immigration reasons, but I get to visit next month and I'm really excited. I haven't had any more outbreaks, and neither has he, so I'm hoping we both beat the bug. The only lingering effect has been the hospital bill and collection agency who can't seem to figure out how to invoice his socialized Dutch healthcare for their exorbitant fees. All in all, I think we both emerged from the experience with a richer perspective on the complete and utter failure of the health delivery system in America, and a much deeper respect for our ability to care for each other as partners.

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triv33's picture

fuck yeah! OMG, I remember that! Some Christmas, eh?

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A side note about MRSA

geomoo's picture

I hope you've got rid of the little buggers, but I wanted to mention one thing.  Honey from New Zealand, from a certain tree in New Zealand, has shown good results helping from MRSA.  You just put it on the skin in a poltice.  The stuff probably comes already in poltice form.  I told one person about this who was having a hell of a time, and he got good results with it.  You have to be sure, though, that it comes from the right kind of tree.

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Manuka Honey.

triv33's picture

You can get it online.

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