Problems with Pain Clinics...and Not Having Health Insurance

This post is about the problems with pain clinics and health care. I feel the need to share my story about my experience with my first pain clinic I went to back in 2007 so you can understand why I was afraid to go to another pain clinic.

It was a dark dreary day on May 7, 2007... ha ha, joking! Seriously though...Let's start with why I went there to begin with. I had a lapraoscopy back in November 2005 for what I learned after surgery was a pelvic adhesion and endometriosis. The back of my uterus is attached to my small intestine to be specific. Sounds like fun, right? Well it's not even close to fun when it's painful. During the surgery they cut the adhesion and in my follow up visit the doctor told me it may come back 10 years down the road or it may not. Guess who made a come back July 30th, 2007? Wonder how I can recall that date? The pain was so sudden and so severe I thought it was my appendix about to burst. My appendix? Yea, that's the location of the adhesion, so I'm probably going to be really screwed if I ever have problems with my appendix as I won't be able to tell if the pain is from the appendix or adhesion.

So I decided to go to a pain clinic on my own free will. I thought perhaps they would be able to do something for me. I made an appointment to MAPS in Coon Rapids, MN. I initially requested a female providers. I feel more comfortable with female providers. They understand female health issues and it's been proven they listen to female patients better than male providers do. The first available appointment for the female doctor was 3 months out. I decided to suck it up and make an appointment with a male doctor. I check in and the front desk says "You know your appointment today is with a male doctor, right?" I'm like yea, I made the appointment. Duh. The nurse brings me back and says "Your seeing a male doctor today." At this point I realize they made a note on my chart that I requested a female doctor. Why would they do this? I'm not sure. When the doctor comes in the room he doesn't say hi, hello, nice to meet you. His first words to me are "I can't exactly get a sex change, can I? I don't think my wife would like that." Even after that, I still didn't get a hi, hello, etc. I was flabbergasted. I was speechless (that doesn't happen often for those who know me). Needless to say the rest of the visit went downhill from there. I left there feeling like the lowest piece of shit, like a drug seeker, like I wasn't good enough to be treated with respect. I went to my car and cried. I kept thinking why would anyone want to go to this clinic? Why should anyone be treated this way? I never went back. I also decided at that moment when I got my nursing license I would NEVER treat a patient that way. That doctors name by the way? Dr. Thomas Cohn.

Think I'm being mean, rude, etc? Then may you have an experience like mine. Walk a mile in someone's shoes...

Since this Behcet's thing doesn't appear to be going away anytime soon, it was off to another pain clinic- United Pain Clinic. I tried my best to keep an open mind and not lump this pain clinic into the category of the other one, a.k.a. shitty pain clinic. Now, if I had written this on Tuesday, I'd have nothing but nice things to say. I brought my mother-in-law, Sue, with to the appointment for three reasons. 1) for support 2) to help me remember what they say 3) to have a witness in fear of them trying to pull some shit. I saw Dr. Sena Kihtir. The visit went well, she even knew what Behcet's was as she is from Turkey. She hasn't treated anyone for Behcet's since she lived in Turkey, but it was nice not having to explain what Behcet's is. The treatments we are going to do are Botox injections for my headaches, aqua therapy, biofeedback therapy, and adding Lyrica and Piroxicam to my meds. She asked me if she was going to be managing my meds or if my PCP was. I said I didn't know as we didn't talk about it. The next day I sent a message to my PCP and since I'm getting into meds she is not familiar with, she'd prefer they manage it, so she forwarded it on to Dr. Kihtir. I get a call about 3 PM yesterday, who I thought was the nurse but now realized it was Dr. Kihtir, stating I have to do a drug test and bring in my medications to her before she will prescribe them. Here's the problem with this. I do not have insurance and it would cost me $500 dollars to have this drug test done. Yes,$500! Now, I don't know about you but how many of you can afford this? Especially when you are out on disability. Trying to make ends meet when you're on disability is NOT easy. I said to her "I cannot afford $500 right now." Her response: "That doesn't matter. In order for me to prescribe them, you need to do a drug test." Guess what, it matters to me! She said she was going to send a message back to my PCP and I said "So am I." So I'm going to back track to Tuesday to tell you more specifics of my office visit with Dr. Kihtir. While I was being roomed by the CMA, I told her I cannot afford to pay the $500 but will be more than willing to do the test once I can get MN Care (hopefully November 1st). Why November 1st? In order to qualify you have to be without insurance for 4 months. Think we don't need health care reform? May you be placed in my position right now and see how well you manage with a chronic illness that requires anywhere from 3-15 visits a month to doctors. OK, I'm getting away from the visit. The CMA made it sound like it wouldn't be a problem. She even had me sign a narc contract. What is the point of the contract if they aren't prescribing me meds right? I can't think of a reason. As of yesterday it's not in my chart, but I have my copy at home. Then let's discuss the fact that Dr. Kihtir said I need to bring my medications down for her to see. I offered for her to see them at the visit Tuesday and she didn't seem interested at all. In fact, she didn't even respond when I offered them for her to see. And yes, she heard me because Sue heard me across the room. I am happy I had my mother-in-law with as she can back up my story about how things happened. In fact, her words to me yesterday were "I was under the impression it wasn't a big deal and you could do the test when you have insurance. They made it sound like it was no big deal." Thankfully my PCP is continuing my meds until I can get insurance.

So what next? Well I'm not one to stay quiet about things. Especially when it comes to the company I work for. Since I have had this experience, I have decided to write one of the higher ups in the company hoping he can help me and others who are in my position. What's my position? Backed into a corner until I can get insurance through the state. I have Allina Partners Care, however, they do not cover this drug test. I was going to go to Allina's Penny George Institute, which is an alternative healing place, but they do not take the Allina Partners Care. With the big stink about narcotics now-a-days (and yes I understand why), you think they would want people to go to any place they might benefit from to cut down on narcotic use. I am very disappointed that Allina Partners Care doesn't cover these options. What about the people who do not have a PCP who cares about their patients? And yes, they are out there.

Have I mentioned that stress triggers flare ups in BD? How many people get stressed over these types of problems? Many of us do. Unfortunately we get backed into a corner more often than you realize. What am I hoping will happen with the letter I'm writing? I'm hoping to help patients down the road. I don't think the policy will change anytime soon as everything has to go through numerous people/committees before a final approval will even happen. I hope this inspires more people to write their clinics about what needs to change. If nobody talks about it, how do we expect things to change? My motto is: If you are going to bitch about it, do something about it.

The quote below is one of my favorite quotes ever. You want the world to change, step up. You want people to change, step up. 

"Be the change you want to see in the world." ~Mahatma Gandhi

A side note: I'd like to wish Happy Anniversary to my parents, Steve and Betty. Today is their 37th wedding anniversary.