Posts Tagged ‘Doc’

By the balls

ClinicI had a doctor friend tell me that when she was in medical school the loser students chose the field of pain. It was seen as a money-making arena, rarely successful for its patients. Ambitious doctors chose other fields, where they could actually be effective.

A friend was just dumped from her pain clinic for remaining steady on her treatment plan for many years. She has a neck injury, two children and runs her own fulltime practice. She found a med that works for her, and has been taking it at a low dose without incident. Dream patient, right? Evidently, no. She doesn’t need expensive, experimental procedures. She isn’t making her pain clinic any real money and they need to make space for patients who need their services (i.e. desperate and have some insurance cash to spend). She is now struggling to find a clinic that will take her care on, her life will be turned inside-out if she cannot get the medication she needs.

Pain clinics are failing our community. I’m sure you have heard at least one story about the pill mills, and they certainly exist. But the demonizing story you are likely to hear is too simple and has made things impossible for those of us trying to get real treatment.  Most general practitioners are no longer allowed to prescribe pain medications, their clinics don’t like the liability. So if you have a chronic  pain disease, you are sent into the pain clinic system.

Let’s use my experience as an example: I have a condition called Sphincter of Oddi (SOD3), one of my digestive valves is misfiring — closing when it shouldn’t and remaining so, causing my entire system to back up. It hurts like hell, all day, every day. I see the top GI specialist in the country and he does not have a cure for me right now. My pain, and its cause, is very different from that of Fibromyalgia, RA or a back injury — it is called binary pain.  It is rare, but not unheard of. I have been with my pain clinic for almost 2 years now and I still have to explain what SOD is at every appointment.

Without knowing anything about my disease, my pain clinic had a list of recommended treatments for me at my very first appointment: take gabapentin, do physical therapy twice a week in their PT clinic, and undergo steroid block injections. I have discovered that this is what they recommend to everyone who comes to them, no matter their diagnosis. I don’t pretend to know why, but I suspect those injections make them a pretty penny. I did each of these things, the injections three times. When the third round made my pain worse, the Doc commented that he hadn’t thought that treatment would work for me.

Along with the expensive treatments, I get a lecture each visit about the horrors of using opioid pain medications. They simply must get me off of the one medication that actually works. The one thing that has kept me out of my bed enjoying my girls for the last 7 years. I have told them again, and again, that unless they can find something that actually works, I will continue the medications. However, if the war on drugs is successful at limiting the use if these medications for patients in good standing, it won’t be an option for me much longer.

I rarely see my actual doctor (he is one of the top 25 pain docs in the country), the clinic uses nurse practitioners and assistants to run the day-to-day appointments. I have yet to have an appointment where the nurse has actually read my chart before meeting with me. Every time I have a procedure with my doctor I have to tell him who I am, and describe my condition & past treatments, while laying face down on the surgical table. They must see thousands of patients a year within their 8 clinic system.

It is a money-making mill, and it is my only hope. Most pain clinics are much like this. If you switch, or doctor shop, too often they decide you are a med seeker and you can no longer get in anywhere. They have us by the balls and they know it, no customer service required. This is all to say that something has got to change. Contrary to the guilty-until-proven-guilty way we are treated by our pain doctors, we did not choose to have chronic pain disease and we deserve the same kind, thoughtful treatment given to those with other conditions, like diabetes or heart disease. Every patient should get an individualized treatment plan based on their actual diagnosis. Doctors should spent time with their patients, actually getting to know them and their potential for drug abuse. The end game should be bringing comfort to people who desperately need it, not filling pockets with cash. It is time to submit editorials, write to our representatives and advocate for ourselves, or continue to accept things are they are, in quiet desperation.

7 Januarys

JanuaryYou remember that thing in middle school (I assume it still happens), where a kid is rushing down the hallway, her arms full of books and another a-hole kid sticks his foot out, sending the first kid flying to the ground, stuff scattering all over the floor? That has been 2013 for me so far.

I spend my holiday vacation gathering up enthusiasm for the new year. The nausea meds were working and 2013 was going to be IT! I was already planning the tattoo I would get to celebrate when the pain finally vacated. January was the month that my Doctor would finalize my diagnosis and schedule the cure.

I just had to fail a couple of tests first. I began with another MRI. Did you know that 1 in 100,000 people are allergic to the contrast they use to day-glow your insides? Turns out, I am one of the lucky ones. Not going to go into great detail about what happened in that tube, nobody needs to relive that. Test two was an endoscopy (scope down your throat to view your insides & take pictures), they threw in some secretion to really piss-off my pancreas.

The attending Doc woke me from my sedation haze to tell me that everything looked great, “absolutely fine” he says smiling at me. I could barely speak, I think I nodded. Lucy just yanked the football away, again. I lay there, on the ground, for a day and a half.

Figuratively, of course. My body got up, put on my winter gear and hiked back to the car with my family. I crawled onto my couch with my girls, cried with my husband, and took an extra day home to comprehend how I would revive the part of me that makes the hope.

At Least it isn’t Cancer

Friend: How is all of your health stuff going, have they figured it out yet?Red 3D Cells

Me: I explain how I am chasing another diagnosis with new tests, trying to sound positive about the potential of having my pancreas removed, or some other super-fun procedure.

Friend: Well, at least it isn’t cancer!

How does one respond to that? Yes, cancer is a monster of a disease that can ultimately kill you. No, I do not wish chemo on anyone. And, yes, the people I know who have fought or are fighting that demon are super-heroes in my eyes. I realize that this friend is trying to make me (or them-self) feel better about my completely depressing health situation; it comes from a good place. But I have no idea how to respond.

If I say, “Yes! Cancer would really suck!” we can all just move the conversation along to what we are doing for the holidays, or something equally pleasant. And that is what I usually do, because I am not a masochist and I’d like to be invited to lunch again. But this quietly denies the power of my own disease in some way, the reality of my life. If it isn’t cancer, it really can’t be that grim, right?

There isn’t any purpose in playing compare the malady. Everyone is fighting his or her own great battle. But I would be lying if I said I haven’t considered whether or not I would trade my ailment for a cancer diagnosis, you can’t help it when people unfailingly reference it. Some days I do wish I could trade my near constant nausea and pain with a definitive chemo treatment. I wish I had an illness people had heard of, had a healthy respect for, because I am weary of trying to explain it in a way that fits our world’s short attention span. I face the fact that this thing might slay me everyday. Even worse, it might just suck every last bit of marrow from my miraculous life over the next 40 years. And, ironically, it often causes the big C.

I actually have very little interest in mulling over every gory detail at lunch. I want to laugh and talk about my kids. I deeply appreciate your concerned inquiries and it really is just enough that you asked, that you recognized the darkness for a moment. Please know, that simple act is enough, you don’t have say something to make me feel better. I can see, just by looking into your eyes, that you wish it were so.

Drug Babies

Can you watch this video without grinding your teeth? I can’t watch even 5 seconds of it, and my daughter was one bad Doctor away from being a drug baby herself. I’m not going to rehash the details here, if you are new to my blog, please check out the early story starting here. However, I never mentioned that the first Doctor I discussed my potential pregnancy with told me to go ahead, to get pregnant on my narcotics and to stay on them, because it would be too stressful to quit. This advice didn’t sit well with me so I moved on to a new pain Doctor who was willing to help me deliver a drug-free baby. I say a little prayer of gratitude every time I see one of these recent stories about the upsurge in babies born addicted to pain medications.

Having been through a pain-related pregnancy, I have an intimate understanding of the difference between someone trying to have a family while managing a chronic disease, and someone stealing Vicodin to feed their addiction during pregnancy  (I am not equipped to discuss the disease of addiction here today, but I know it is a monster) . I have had the privilege of befriending many moms who have fought tooth and nail to deliver healthy babies, pain be damned. I am deeply worried that the general public, and their trusted reporters, do not/will not understand the difference. I am torn to pieces every time I see one of the recent reports, a bit of me wishing the story would disappear from our screens as quickly as possible.

I fear this current scrutiny will not benefit moms like me. In this black and white world, our gray-area-pregnancies are hard to explain. We tend to hang-out in the shadows, in our private chat groups, or the safe harbor of our homes. Doctors aren’t sure what to do with us, there is no research, so I don’t expect the average person to understand how I managed my pregnancy. I am worried that, after seeing this damning news coverage, the average person will feel they can tell me how to manage a pregnancy.

I guess I just wish I saw myself somewhere in the reporting of this story, some information about how moms like me use their meds responsibly, fighting the lack of support around every corner. Something deeper about why some of these babies are suffering as a direct result of the inconsistencies in the world of  pain management. If this story was as black-and-white as it seems, my daughter would not have been one Doctor away from a tortured welcome into this world. So please, take a moment before condemning every mom-to-be on pain medications, there is another story, even if I am the only one telling it.

* Please feel more than free to share your story, if you are so inclined. 

A Wash.

Please forgive my blogger absenteeism; I’ve had 2 wires wrapped around my spine and sutchered to my back. For some reason (because my Doc told me so) I thought that this Neuro-stimulator trial would be easy-peasy. I am an idiot. You’ll be shocked to hear that it hurts like hell to have wires inserted into your body and sewn to you back (I’m a total idiot). Then you wander around for 10 days with all of the exposed stuff taped to your body and you pray you don’t accidentally yank it out. Oh, and you are supposed to be able to discern if it helps your chronic pain, which becomes really freaking hard to separate from the new throbbing in your back.

The trouble seems to be that most of my Doc’s patients are home on disability. My nurse showed visible shock when I told her that I would need to continue to go to my office and care for my daughters during the 10 day trial. Then she sort of gulped, wished me good luck and told me not to lift anything bigger than 5 lbs. Yup, my baby is 16 lbs. This was not going to be the trial I was sold on.

So what does one do when she comes home from a procedure that has made it problematic to care for herself, much less her family? She calls in the team, as much as she wants to be independent, she sucks it up and asks for help. I had a lovely wedding, beautiful baby showers, even a surprise 30th birthday party, but I have never been truly stunned by friendship. Consider me astonished. There was food on my door step every night, childcare whenever I inquired and beautiful trinkets delivered to cheer me. My husband took on the herculean task of handling me (my incessant whining) and our girls from 5 am to way-past-sane pm without blinking. I am blessed beyond reason with the sort of people who just do: they didn’t ask what I needed, they just knew.  They have taught me so much.

The week sucked. I managed to work and my family came out OK (if not better fed) on the other side. The trial failed. I’m trying to wrap my brain around the next one. But for now, I’m enjoying the fact that I can bend at the waist, shower and love-up my little ones whenever I wish. I’m digging out and trying to find the energy to fight again. And, I am awash in gratitude for the love I’ve been given.

Bionic Mama

In one of my favorite childhood pictures I am standing, posed with my fists on my hips, in my Wonder Woman underoos. I have band-aids covering battle wounds on both knees and I am grinning ear to ear. I wanted so badly to be Wonder Woman, but it looks like I’ll have to settle for the Bionic Woman. Amazing legs, but her costume is very disappointing.

I do not have Endometriosis, I also do not have Cancer…perspective is everything. I’m recovered from my surgery and ready for the next solution: implantable pain control.  There are two types: nerve stimulator and drug delivery. The main goal is to control the pain with significantly less medication. I will start a nerve stimulator trial at the end of the month. It basically tricks your brain, making the pain sensation a good one (I’ve had some unmentionable recommendations as to what the sensation might be). I’ll have a wire implanted at my pain site and carry around a super fancy fanny pack for 10 days (maybe the Doc will let me use my Kate Spade instead). If it works, we will implant the pacemaker sized contraption into my back side – Ta-da! Bionic Woman!

Nerve stimulators are not super successful with my type of pain, but insurance likes you to test them. If it doesn’t work, we will move on to the drug delivery system trial. If you imagine the daily medication I am taking now is equivalent to a gallon milk jug, this system would lower it to a teaspoon. It delivers the meds directly to the spine, so you get better results without the mental and digestive side-effects. Same set-up as the last: pacemaker size machine implanted in the backside and refilled with an injection. Implantation can be a bit more dangerous, as it involves the spine.

My last pain clinic did not offer this as an option, telling me I was destined to take narcotics for the rest of my life. I am thrilled to have found another way around the looming dead-end. It feels a little dramatic, all of the procedures and such. But, I remain hopeful and grateful to live in the land of Medtronic. Thinking I need to do some underoo shopping in preparation…

Praying for Endometriosis

I’m praying for Endometriosis. When My OBGYN told me I needed a surgical procedure, I lit up like a kid on Christmas. She and I laughed as we went over my (comically long) pre-op medical history. I called my husband from the car and he was happy to get the good news. I hung up the phone and realized how ridiculous this would sound to anyone outside of my little circle.

When you have undefinable pain, caused by a controversial disease, most of your Doctor visits involve a wild goose chase. Typically the Doc has a new theory, often based on a weird symptom that you’ve discovered. The second appointment is testing: CT scans, MRIs, tubes in places you’d rather they not be. (I once had a tube through my nose, down my throat and into my belly for 36 hours. The best part was that you could not swallow when they placed the tube. Right.) The third appointment is when the Doc tells you the tests show nothing conclusive. Back to the drawing board, tears in the car, “maybe I’m crazy, but that seems unlikely, as those psych tests were also negative.” It is wrenching and you find yourself praying for very weird things, like endometriosis.

Please don’t get me wrong. Endometriosis is a painful disease and I do not envy anyone who has it. I just want something with a name, something with a researched plan of action and I prefer it to be non-life threatening. So it looks like I will be the most positive person in my hospital this week. Please put me in your wishes, and please pray for Endometriosis.

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