Posts Tagged ‘Medical Specialties’

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.

Write it on your heart that every day is the best day of the year.

I have always unabashedly loved February. When I was a kid, hearts were my thing, had bunches of them hanging all heart-shaped-snowover my pink bedroom. Loving You Barbie was living in my plastic penthouse suite and every notebook I owned was covered in my original heart renderings. I’ve found myself lingering on memories of childhood happiness lately, because I see so much of it in my girls, and because sometimes I need a visit to that happy heart-filled place.

In year’s to come, this February might be the one I look back on for a moment of sweet contentment. I’ve had a breakthrough of sorts and I am tentatively hopeful. Last week I bit the bullet and did a trial for a pain pump, basically a pacemaker for chronic pain disease. My Doctor placed a catheter in my spine and then pumped pain medication directly into the spinal fluid. I spent the next two hours trying to piss-off my pain and, in the end, it only reached a level 2 of 10. Typically it would have been a 6.

Sitting in the recovery room felt like I was a attending a revival. The girl next to me kept saying “I can lift my arm! I haven’t done that in years!” It was truly amazing. The trial usually lasts for two days, but I got a spinal headache on my way out the first day, and my Doc had to pull the catheter. However, the first day was a success and we are going to move forward with the actual implant.

Wariness has never been my thing, I’m not good at it. So, while I wait for my insurance to move this process along, I am going to buy those heart push point pencils (remember those??) I’ve been eyeing at Target, I’m going to paint my toes pink and I’m going to eat too many gummy, sugar filled things. Hope you all treat your inner child to an unabashed Valentines day.

Write it on your heart that every day is the best day of the year. – Ralph Waldo Emerson

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.

Happy Trails

My almost-one-year-old daughter is on a mission to wrap everyone around her little finger. We are twelve hours into a fourteen hour travel day and we are boarding our last flight. I know my fellow passengers are not thrilled to see a baby lining up for their evening trip. Stroller stowed, I’m lugging my daughter down the tight aisle, waiting impatiently for the crowd in front of us to shove their carry-ons overhead, bouncing to keep her content. As I grimly swap her from hip to hip, she catches the eye of a woman across the way, her eyes go wide, she holds up her little fingers and says “H-i!” as if she is greeting her best friend after a long, heartbreaking absence. The stranger melts right there in front of us. My little diplomat then repeats this greeting to everyone she can beguile. By the time we get to our seat, every passenger on the plane is our friend, fawning over her for the rest of the flight.

My online signature quotes “be kind, for everyone you meet is fighting a great battle.” And most days I succeed at remembering to treat people as such. I know that chronic pain has given me a unique perspective on personal battles, one I should use in all of my daily interactions. However, had anyone given me a reason to, I would have turned bitchy fast on that last flight of a very long day. It was amazing to see how quickly road-tired people warmed to the genuine greeting of a baby, inspiring even. To be seen by anyone, really seen, can make every difference in the world.

In honor of my miracle girl’s first birthday this month, take a minute or two to see and sincerely greet each other. Forget your pain, recognize the struggle and strength of the people around you. I promise, it will make your trip all the sweeter.

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. 

Running Renegade

From the window of my cool, air-conditioned car I have found a new inspiration this week. Every morning I’ve spotted an 80-something (I’m guessing) man in his grey trousers, button-up shirt and trainers. He is holding his crutch type walking aids under one arm, and he is jogging. It is so damn hot I can’t sit outside in the soup and he is jogging. It makes me wonder if his caregivers know he is out there, you get the distinct feeling that he is not suppose to be running.

I am starting to get the distinct feeling that I am not suppose to be working. The medications and treatments one receives for chronic pain make you extremely tired, sometime dizzy/foggy and often a little seasick. I have yet to find an option that reduces the pain without some level of side effect – which are not helpful for productivity. In short: the medical world cannot support me as a working patient.

Solution #2 is to adjust my work to accommodate my disability, it’s what the ADA is for, right? Without making too much trouble for myself, I will say that this is far more difficult than I imagined. The fight for accommodation (10 hours/week of telecommuting in my case) has been maddening. In short: the business world is not interested in accommodating for my chronic pain and I can’t afford the lawyers.

I’ve started a new job this week, one that promises to be an exciting challenge for me professionally. It is with a larger organization that has fantastic health insurance, vacation time and an actual HR department. I am training long days at my desk and, although I am in terrible pain, I am hopeful that this will evolve into a working life I can manage. I feel like I am keeping a secret from my management, I’m not suppose to be working. But if my jogging friend can set his sights for the end of the block, I can certainly make it through a Friday.

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.

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