Posts Tagged ‘insurance’

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

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.

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.

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…

Run Dry

I breastfed for the last time this morning. I am not a woman who loves to nurse, it took Herculean efforts to produce anything for both of my babies. Which is why ending so early is bitter sweet. There certainly is something to looking down onto a completely satisfied face, knowing that I’m providing everything she needs. My first weaned herself at 10 months, about 12 weeks after I received my graduate degree and headed back to work. Life cannot afford me a 7 month maternity leave this time and things have already run dry. The benefits and freedoms of moving on will hit me soon, but for now I am feeling the sting of a far too short baby leave.

I’m trying not to rant here, but this is a national issue and, if I don’t speak, it won’t be corrected. I will not have another baby, but my daughters might and I hope things are better for them. We all know that, when we compare our national maternity leave policy to other developed countries, we come out on the short end. At least 178 countries have national laws guaranteeing paid leave for new mothers. More than 50 nations, including most Western countries, also guarantee paid leave for new fathers. In the US, like most things, it has become an issue dividing the haves and the have-nots. Evidently, family values have a price.

My experience is a shining (or not so shining) example: I am the full-time working mom of a lower-middle class family. My field is small and does not provide paid leave, relying on its employees to purchase disability insurance to cover their own time off. I have the unlucky circumstance of suffering pre-existing conditions, so the Aflac duck rejected me. I had to pay for everyday of my leave out-of -pocket. I took on additional consulting work throughout my pregnancy and its going to take an act of God to keep us economically afloat through Christmas. I have used every second of sick time I have through June of next year.

I’ve returned to the office despite the fact that I am still working with my Docs to get my health back on track, my daughter is up twice a night with colic, breast pumping has failed almost immediately and, lest we forget, my husband and I are suffering the economic stress of digging out while trying to pay for childcare, more health insurance and the looming Santa season. Not shocking that 60% of women who return to work before 12 weeks suffer from diagnosed, medical depression. The cost to employers in productivity and tax payers in welfare/health coverage should be enough for us to reconsider our policies.

Going into the pregnancy we knew that this would be our burden to bare. I did not make the economic downturn, it has denied me so many things but I’ll be damned if it was going to keep me from being a mom. Maternity leave should not be the major barrier keeping otherwise stable families from having children. My baby girl has started to coo at me, so many stories she has to tell. No doubt she is worth all of this, but it is my job to always want more for her. To want more for the families in our country.

MORE information from Human Rights Watch.

Magic

You really can’t have a conversation about chronic health issues without it becoming a conversation about health insurance. Please allow me this brief bitch session: Stuck in morning traffic last week, I found myself shouting obscenities at my radio and dialing random numbers, trying to call-in to the local MPR station (of course I remember the pledge line number).  The experts were discussing pain  management and systemic abuse of medications. One said expert was complaining that patients just wanted a magic pill and were unwilling to try alternative measures.

I’m sure there are patients like that out there – and can you blame them? Magic pill? Yes, please. However, my experience has been that health insurance really only allows for pills, pills and more pills. For example, knowing that I would soon be a pain med-free pregnant woman, a specialist recommended that I try a second run of acupuncture with a specialty clinic under my hospital’s umbrella.  I was elated to discover it was actually covered under my medical plan and I booked 6 visits.  Adding to my elation, I had a glimpse of hope, feeling my pain recede slightly after my second treatment. I truly want to deliver a medication free baby and it was starting to look like a real possibility.

That was the week my insurance sent me a $300 bill for my first visit. While I was waiting to get into this sought-after clinic, they had dropped acupuncture from my coverage without warning.  The ridiculousness of this is impossible to comprehend when you consider the costs of life-long prescription medications, steroid shots and general wear & tear caused by the daily use of pain medications.  Not to mention issues of healthy pregnancy and general well-being.  What will it cost them if my infant is born in withdrawal and requires an extended stay at the NICU?

The customer service rep on the phone responded “Just because something is medically required does not mean that we cover it.” My family pays $1,200 a month for this insurance coverage. We cannot afford to pay out-of-pocket for anything.

Unless you are independently wealthy, the system does not allow for creative or even obvious solutions. Take the damn pill, magic or not, because it is all the comfort you can hope to get. It is neither logical nor human.

The Littlest Rabbit

Just another WordPress.com weblog

National Pain Report

What You Don't Know Can Hurt You

SeasonedSistah2

Today is Better Than Yesterday

These Next 6 Months

It's all about perspective...

The New Melissa

Finding the new "normal" and creating a new life with migraine disease

Tissue Tales

My journey, navigating through life with a Connective Tissue Disorder.

Chronically Inspired

Rising Above Pain Creatively

intoxreport.wordpress.com/

'The Contra-Connoisseur’s Guide to Wine, Beer, Spirits And Other Stuff The World Got Right'.

Living Life As I See Fit

Because There is More To Me Than Just Rheumatoid Arthritis & Fibromyalgia

The Diary of a Happy Mom: 40 and Beyond

The trials and tribulations of an adventurous modern mom

Pain In The Mom

...trying to keep sane while in chronic pelvic pain

Graceful Agony

Living your best life in spite of having chronic illness and pain

grUBER FIT

Health, Fitness, Experience, and Adventure

Bucket List Publications

Indulge- Travel, Adventure, & New Experiences

Not From Around Here

Adventures as a Stranger in a Strange Land

Tea Time with Mandy

Only in Canada? Pity.