Archive for April, 2013

Good rain

Playing in the rain

I’ll take the blame for this absolutely ridiculous blizzard in April weather (sometimes a bit of crazy narcissism is just what the Doctor ordered). I have been waiting, hold-up in my little house, hoping for a seismic change. Old man winter seems to be sympathetic to my plight, dumping slushy misery in solidarity. However, I am forecasting a change in the weather this week. My pain pump implant surgery is Wednesday and it is about time for spring to sprung.

These last couple of weeks, as I’ve been wrapping my brain around this change, a Storyhill song has been rolling though my mind. It has been reminding me of that smell of rain on the hot pavement, when it starts to fall after a steamy summer day.

It was a good rain
The kind that you wait for
And it’s not like it’s been too hot
It’s just that we’ve been waiting
And everything is different
Now that it’s raining

Everything is about to be different. I will soon be taking my girls puddle jumping in the spring rain. I’m going to need all of the finger-crossing goodwill I can get, so please keep me in your thoughts and prayers. Much love and so much gratitude.

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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