Posts Tagged ‘Phantom Ribcage pain’

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.

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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.

You don’t look sick

pain-faces-web

Recently my pain clinic posted a video asking patients how they want their lives to be remembered, it seems we have choice between “she was such a kind person, but oh, how she suffered,” and  “she lived her life to the fullest!” I guess the answer is supposed to be #2, all made possible by the clinic’s amazing treatment plan. Don’t I wish the answer was that simple, what kind of idiot chooses answer #1?

It is hard for people to know how to approach me. One of the most common compliments I get is “you don’t look sick!” I suspect they are scrutinizing me; trying to connect the person I am here in my blog with the person they see everyday running around with my kids. I’m not sure what a person with chronic pain looks like, maybe those faces on the pain scale? You have to watch pretty carefully to catch my “tell.” My weekend looks just like anyone’s: my husband works on Saturday and I take the girls to swimming lessons, shopping, errand running; Sunday is church and some weekend fun at the zoo or park. We love our family movie nights at home, or a dinner splurge out on the town. There isn’t time for illness, so I do subtle things to make life possible: like taking meds though out the day to keep the pain and nausea at a reasonable level (what a concept); I use a stroller for my little one and her daddy carries her more than I do; I sleep-in when I get the chance, leaning on my remarkable husband to wake with the girls; I am beyond exhausted at the end of the day, far more than I should be. But, most days, I’d rather end it in absolute collapse, than spend it on the couch waiting for my life to return.

It is easy to discount my pain by conceding that if you can’t see it, it doesn’t really exist. I further facilitate that notion by living, for the most part, as though it doesn’t exist — it is just easier on relationships.

I had an officemate who would notice a tell I wasn’t even aware of: I would hold my breath at my desk when my pain was ratcheting-up. She would notice that I wasn’t breathing and say something simple like, “it must be bad today.” I am glad, and proud in many ways, that I do not look sick, however, the unassuming way she acknowledged my illness was such an unusual kindness. It made it easier for me to keep on pushing, just because someone acknowledged what was really happening to me.

If I have learned anything throughout all of this, it is that we need to be better at acknowledging each other’s pain, without judgement or comparison. So, I guess my answer to the clinic’s question is: she lived life to the fullest, because she had love and support all around her.

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

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.

Hitched for the Holidays

This week, I am the leading lady in a Lifetime movie plot – it would be a Hallmark Hall of Fame, but their charactersfala are a little too naive for this storyline.

Our first daughter was born just before Christmas; during those hazy midnight nursing sessions, my husband and I discovered Fa-la-la-al-Lifetime.  It beats infomercials and Public Television Membership Week hands down.  These movies play 24/7 throughout the 6 weeks before Christmas and we have seen almost every one.  There are 3 plot lines and the best ones feature actors from my teenage years (I never miss anything starring the kids from 90210).

One of my favorite story lines, and the one I am playing in this year, is the one where a beautiful single person (pretending to be undesirable) is tired of hearing their mom complain about their lack of spouse and they hire a companion for the family holiday festivities.  I don’t want to spoil the end for you, so don’t’ read on if you prefer the suspense. They fall in love with their partner-for-hire and kiss under the mistletoe.

So, as you might have guessed, my version is a little different: my blind date for the holidays is a new miracle medication meant to sooth an ailing digestive system (I already have a handsome man friend). Scorned in the past, I was not hopeful. However, the last few good days have me skipping towards the mistletoe.  On my new pancreatic enzymes, I have been eating without regret for the first time in 20 years. Cue make-over montage, I feel like dancing!

These movies (and med trials) usually have a bit of drama after that first longing-look, so I am waiting for the other Louboutin to drop. But I am hopeful, and isn’t that what this cheesy season is all about?

I hope Santa brings you and yours everything you’ve been wishing for, including a made-for-TV happily ever after.

 

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.

The Littlest Rabbit

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