Archive for the ‘Medical system’ Category

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.

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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.

Fighting to stay in the 54%

I have been fighting to remain at work fulltime despite the last 6 years of chronic pain and illness. I’ve managed to stay off of disability thus far, so I guess that puts me in the 54%? I cried the day ObamaCare was signed. It actually means the world to me.

As hard as I struggle to stay at my desk everyday, I will to come to a wall at some point; a time when I can no longer bear the traditional work day. I imagine that I might start my own consulting firm (small business), a job that would allow me to work flexible hours, from more comfortable positions. The key to my ability to remain viable in the workplace is ObamaCare. Without it, my pre-existing-condition-self will not be able to get health insurance. Without it, I will hit the disability rolls far sooner than I care to.

ObamaCare isn’t just some program that the politicos debate over, it means the world to me. This final week of the political season, I hope that we all can take a minute away from the score-keeping craziness of the 24-hour news cycle to consider the people these programs will actually affect. In the end, it isn’t an ideological game to be won, it will mean something to my future, to my family’s future and to yours. Use your voice to vote for all of us on Tuesday.

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.

The Lunatic at the Counter, or why you saw me crying at Target

Refilling my non-pain related medication:

  • My pharmacy registers it in their handy refill program, I get a $5 gift card.
  • My prescription is ready 2 weeks before I actually need it.
  • NOTE: in this example I never look like a drug addicted lunatic.

Refilling my pain medication:

  • Submit a monthly email request to my Doctor on Monday, a process she insists on.
  • Call the office 3 days later, after receiving no response to my email.
  • Go to the office on Thursday, the day my prescription runs out, and refuse to leave until I get my paper.
  • Take order to the pharmacy, wait 30 minutes to discover that the insurance requires something else of my Doctor. It’s after 5pm (the only time a working mom has to hang around Target, bribing her daughters with trips to the toy isles).
  • I am now completely out of the medication that I need to control my pain (because they track it that closely), medication I have taken for years without incident (I’ve never lost even a pill).
  • I beg the pharmacist for mercy, to which she nods apologetically, promises to call my Doc immediately in the AM and wishes me luck with that withdrawal.
  • I cry like a crazed lunatic as I push my kids out of the store in that damn squeaky cart.
  • The migraine I wake-up with in the morning drives me immediately to the coffee shop and then the pharmacy to remind them to call my Doc. They promise to call my cell the second the refill comes in.
  • I drag my ass to work in some pretty serious pain. Call my Doctors office and beg them to fix the prescription before the end of the day.
  • It is Friday afternoon and I am still waiting – the weekend threatening.
  • In two hours I will have to leave work early and visit my Doctors office in order to stand at the counter until they find someone to fix the damn prescription. Mustering the crazy will not be hard because this headache would make anyone a little edgy.
  • If I cannot get the medication fixed, I will end up in the emergency room this weekend and they will stamp a big red drug seeker on my chart.

This is not an unusual week for me, this mess happens all of the time for one reason or another. However, it is endlessly frustrating, degrading and unhealthy. I understand that there are systems in place to protect the drug abuser, but why does it have to create such hardship for those of us just trying to have a decent quality of life? The entire system lacks any sense of empathy for the patient, the person it is supposed to be serving. And, I pay $1,700/month for this amazing service.

Wish me luck, I’m going to need it.

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.

The Littlest Rabbit

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