Okay this is fucking sick. In, you know, that twisted, borderline hilarious kind of way.

I just called my primary care physician’s office, to make sure that the referral to the eye doctor had been pushed through in time for my appointment tomorrow. “You can’t be referred to BL [the doctor I wanted to see],” said the receptionist, “because he’s not covered by your insurance. You have to pay out-of-pocket.”

“But I called ahead of time, before making the appointment” I protested, “specifically to verify that you could refer me to him, that he was covered by my insurance.” “Well he’s not,” the receptionist said.

“Okay, forget it,” I said. “What about the referral to my gynecologist?” “What are you being referred for?” the receptionist asked.

You must be fucking kidding me.

“Why do you need to know?” I asked. “Because I need to know what you’re being referred for, in order to push the referral through.” “It doesn’t say why I’m being referred?” I asked incredulously. “No,” she said.

I spoke up. “This is ridiculous!” I said. “The physician’s assistant made me get into this whole thing about why I needed a referral — making me answer all kinds of questions I didn’t want to discuss, and she didn’t even put anything down?” “No,” the receptionist answered.

Here’s the icing on the cake: It turns out that my gynecologist also is not covered by this medical group. The receptionist began rattling off other options I had for a gynecologist. “You know what?” I said, “Forget it.” “Okay,” she replied, and we hung up.

I’m calling my credit card company to dispute the co-pay I shelled out — for what I now know was not only an awful experience, but also a complete waste of my time and money.

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I don’t like being asked about my pain. I have noticed that when I answer with details about what happened, how it happened, how it impacted me, what my pain is like… my pain levels invariably jack up. The only exception is when the impetus to discuss it comes from inside. Then it’s usually about release and healing, not about digging into the pain jar to satisfy someone else’s curiosity.

I don’t even like doctors asking me to rate my pain on a scale of 1 to 10. I’ve always had a hard time wrapping my brain around the exercise, and I have dreaded being asked to do it. While I easily could say how the pain impacted my life - i.e., “I’m having trouble doing X” - the whole numbering system felt stressful.

I now have the hindsight and experience to understand that it’s because my entire being wants to focus on healing. If I’m busy gauging what number to give my pain at any given moment, my consciousness is focused on minutiae of the pain, not on all of the healing potential and resources available to me when I expand my consciousness.

The negative impact of discussing pain is amplified when I’m forced to talk about it against my will, when I am essentially blackmailed for access to health care. That’s what happened to me yesterday.

It was no surprise that as I was responding to an avalanche of unnecessary questions about why I wanted to see the eye doctor, I felt piercing shots of pain through my eye. By the time I got home, the entire right side of my head felt open and raw, with sharp pain I had not experienced for months - in my right temple, my right ear, and in a big circumference around my right eye.

I chose to see the experience as a confirmation of the powerful mind-body connection. I used that feedback to remind myself that just as negative energy could cause me pain, so could positive energy heal my pain. Between positive affirmations, healing visualizations, and an invitation to loving ancestors to help me, I have brought my pain levels way down today.

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HMOs systems can be tantamount to blackmail — human dignity demanded in exchange for healthcare (often substandard at that). As a patient trying to get medical treatment through an HMO, I can end up feeling like a starving person being told to drop my panties and stand exposed before being given a scrap of bread. That’s how I felt today — disempowered and violated.

Here’s what happened:

A few months ago, my health insurance informed me that they were no longer covering treatment by my primary care physician. So my doctor referred me to another doctor, whom I ended up liking a lot.

Among other things, this new doctor is gentle and caring; she listens; she treats me like an intelligent human being who knows my own body; and she works with me in partnership. Last week, I called to make an appointment with her, to get a referral to an eye doctor.

My mom had just found someone who was able to diagnose a condition that nobody else was able to catch — namely, that my mom was at the beginning stages of going blind. (Quite a thing for the other doctors to overlook, no?)

Because this new eye doctor caught it in time, my mom was able to start a treatment regimen that, G-d willing, will keep the condition at bay. My mom of course called me in excitement, telling me that I should see this doctor as well. Because after two visits with different ophthalmologists and multiple visits with one optometrist, I still have problems with my right eye.

Unfortunately, my new primary care physician was not available to see me (for a referral to the eye doctor) until the very end of August. That would make it too late to see the eye doctor before I would move. So I made an appointment with the physician’s assistant, thinking it would be no big deal — a straight-up referral, right?

I got there today and handed the receptionist my HMO card, only to find out that my co-pay is now two and a half times as much as it cost the last time I went to the doctor. So I decided that as long as I was there, I might as well get a referral for two other non-urgent issues that have needed attention. If I couldn’t get in to see those doctors before moving, I reasoned, I could see them when I would be back in town in the next month or so.

In the examining room, the physician’s assistant (PA) asked why I was there, and I said that I needed three referrals — to an eye doctor, a dermatologist, and a gynecologist. I rattled off the names of the exact doctors I wanted to see (though I couldn’t remember the last name of the gyno).

PA told me that I didn’t need a referral to a gynecologist. I tried to clarify whether that was true for any visit, or only for the yearly pap smear. She asked why I want to see the gynecologist. I said I had vaginal pain. She started asking me questions about the pain. I didn’t feel comfortable getting into it with her, and I didn’t see any reason why I should have to — being that she’s not a gynecologist.

So I answered nominally, just to avoid tension with her, then came back to my question about whether the gyno visit would be covered by health insurance or if I needed a referral. We did this dance a couple of times — her trying to get me to talk about the issue, and me trying to get her to answer my question about referrals.

“Are you a doctor?” she suddenly asked me. “No,” I answered, thinking that was a strange question. “Because usually patients come in and say what their symptoms are, and we determine where to refer them,” she said.

“Well I figured it’s pretty obvious,” I said. “Vaginal pain: Gynecologist.” She laughed but continued with her line of questioning — telling me that in order for her to be able to refer me, she had to know what she was referring me for.

Vaginal pain. That’s what you’re referring me for. And do I even need a fucking referral? Answer the damn question.

Knowing that this woman’s demands stood between me and my gynie’s speculum, I decided to play along and answer her questions as briefly as possible. But she was having none of that. The questions got increasingly involved, leaving me feeling increasingly violated.

Not only did I feel that PA’s line of questioning was both unnecessary and intrusive, but I also felt it was presumptuous. Who deemed her worthy of my seeking out her opinion? I very clearly had no interest in it.

And that’s where we get to the blackmail: I won’t be given access to what I need, certainly not when I need it, unless I play by the rules of someone else’s game - no matter how distorted those rules are. Access to health care is swung before me like a carrot on a stick, and I have to jump through certain hoops in order to get it, no matter how irrelevant or demeaning those hoops may be.

I stopped PA’s personal inquisition a couple of times, saying that I didn’t feel comfortable and that I only wanted to discuss the issue with my gynecologist. Then PA started asking questions about my gynecologist — how many times I had been to see my gynecologist, had I mentioned this issue to my gynecologist before, and had my gynecologist done anything to treat it.

Only after, like, my 10th exasperated question about whether I even needed the damn referral did PA finally answer, “I don’t know. It depends on the insurance coverage. Sometimes yes, sometimes no.”

With that, she started in on my eye pain: What caused it, how long has it been going on… I kept coming back to the relevant point: My eye is in pain. I need an eye doctor to look at it.

But she needed details. So many details that after finding out my mother had recommended the doctor I’d requested, she started asking me about my mother’s condition and how is it that we have the same eye pain, if mime was caused by a splash of liquid nitrogen.

“We don’t have the same eye pain,” I responded with irritation. “But you said your mother kept going to see a number of different doctors, like you did,” she said. “Yes,” I answered, “for a different condition.” “What condition is that?” she asked.

Tell me something: How the fuck is my mother’s eye condition in any way relevant to my getting a referral to an eye doctor for my own fucking issue? “She’s going blind,” I spat out with venom, hoping PA would see what a prying shit she was and regret having asked me. “Why is she going blind?” PA asked.

Are you fucking kidding me? “It’s irrelevant,” I said, noticing how over the course of questioning, my body had collapsed into a child-like, vulnerable, disempowered form. “Her condition has nothing to do with mine.”

How can this happen? I wondered. With all of my self-education and self-empowerment, with total consciousness — while it’s going on — that what’s going on is completely fucked, how is it possible that the system can still leave me crumpled like this?

Because with HMOs, someone else holds the keys — to our healthcare, to our choices, to our power, to our dignity. And as with any dictatorial regime, our lives are ultimately in the hands of someone else’s mercy.

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Looking back on our childhood can be an illuminating experience: As children, we may have had the intuitive understanding that something was way off, but we didn’t have the life experience or verbal skills to be able to articulate exactly what was going on or why. As adults, however, we can make sense of things.

I have a similar experience looking back on the decade I spun in a maze of chronic pain hell. At the time, I didn’t understand the monster I was up against. I trusted that insurance companies were there to protect me, that doctors were there to help me heal, that the whole system gave a damn about my well-being.

I know better now. I know that patient lives are sacrificed in the name of profit. I know that doctor integrity is sacrificed in the name of reputation. I know that my trust was betrayed almost every step of the way, that it was never deserved in the first place.

This evening, I read the book When Food Is Love, by Geneen Roth. Roth suggested that being out of control around food is something along the lines of smoke & mirrors, a mask covering our true lack of control — over love, for example.

I resonated so deeply with what Roth was saying, that I put the book down and had a good cry. When my life spun out of control in chronic pain hell, I turned to food — for comfort, for entertainment, for physical activity that didn’t hurt. Over the years, I gained 45 pounds.

Between 2004-2005, I lost 25 of those pounds. During that last year, a chiropractor’s negligence left me with multiple injuries in my neck, shoulders, and right ankle. As an upshot, I was bedridden for much of two months, during which time the simple act of pulling a sheet towards my face caused excruciating pain.

I had just discovered dance as a healing modality, and I used this period to explore it further. So despite my general immobility and resulting boredom and dependence on others, I remained in good spirits and maintained my weight.

What’s more, I made great strides in healing my shoulder, and I was able not only to heal my right ankle, but my left as well — which had been injured a couple of years earlier. No bodyworkers I had worked with previously had been able to heal that injury. I was feeling quite triumphant.

But suddenly, months later, I had the sensation of walking on glass shards, every time I took a step on my right foot. When I went to a podiatrist to see what was going on, he was so busy laughing at my story of injury (a common occurrence that I will address in a later post) that he didn’t pay adequate attention to what I was saying.

He was then careless in handling my foot and, as a result, he reactivated my ankle injury. It was challenging even to drive away from the appointment, because my ankle was in such pain again. The cocktail of sensations — pain, anger, frustration, and powerlessness — threw me back into the arms of food, and I gained 15 pounds in just a couple of months.

After joining a spiritual program for people with eating disorders last year, I quickly lost 13 of those pounds. Then six months ago, when I went in for a wart removal, a doctor thought it would be fun to pour the whole container of liquid nitrogen onto the examining table. In doing so, he splashed a particle in my eye - which caused a chain reaction of problems, including debilitating headaches and constant eye pain.

Snap! I gained 25 pounds.

Roth is right. It’s easier to rummage through the refrigerator than it is to face the horror of a health care system that is criminal. It’s easier to eat a piece of cake than it is to deal with how — despite my education, assertiveness, and determination to heal — I have been injured over and over again, ultimately rendered powerless over my own body and life.

In fact, just by writing this all down, I can hear the chocolate chip cookies calling out to me from the freezer.

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A couple of months ago, I posted the first in a series of medical negligence stories from my life. As I mentioned at the time, I have found that it’s extremely difficult to write about these experiences, because I still suffer from their impact on my body. So I decided to jump-start the process by sharing the letters I have written to doctors following such incidents.

Here is the the third and final letter I wrote about the wart removal from hell. I still am experiencing a number of the problems mentioned below, though not as severely; I still can’t wear contact lenses; and I am still shelling out money for weekly bodywork sessions, to keep the pain levels down.

It’s amazing how one stupid move on the part of one person can cause a long-term, chain reaction of distress and challenge in our lives.

March 13, 2008

Dear Dr. C,

I am writing to update you on what’s been going on with my eye.

Shortly after writing to you at the end of January, I made an appointment with an ophthalmologist. While waiting for that appointment, I went to my mother’s optometrist — who is known for catching things that other doctors have overlooked.

This optometrist examined my eye, informed me that it was swollen (as opposed to my left eye, which was normal), and advised me to use Opcon-A drops in my right eye, as well as continue with the other regimens I had started.

Prior to going to my mother’s optometrist, I was in a lot of pain in my right eye. Shortly after beginning treatment with Opcon-A, however, my eye began feeling much better. I used the drops for about a week and began meditating to reduce the pain, both of which helped.

The next week, I went to the ophthalmologist, who gave me a full exam — including dilating my eyes. (The previous ophthalmologist had not given me a full exam.) This ophthalmologist said that my cornea was fine but that the white part of my right eye was irritated (as opposed to my left eye, which was normal).

While my right eye had felt much better prior to this exam, it was in a lot of pain in the days following. So I went back to my mother’s optometrist, who explained that dilation can cause that reaction. He examined my right eye again and said that while the swelling had gone down, my eye was still swollen. He told me to start up again with the Opcon-A drops.

I tried, but at that point, taking the drops caused more pain than not taking them. So I stuck with the compresses and mind-body techniques. Despite my best efforts to reduce the pain, however, I began having pain not only in my right eye, but in the area around it — i.e., the onset of headaches, with the locus of pain in the upper right side of my head. These headaches have been so intense at times that I have had to stop working and lie down with an ice pack on my head.

These headaches also have made it difficult for me to tolerate noises. For example, while I am having the headaches, I cannot speak on the phone with my best friend as her baby cries in the background, and I have to ask people to speak quietly when talking to me.

For a period of about a week or two, I also experienced intense pain in my right ear. During that time, I could not talk while holding the phone receiver on the right side of my head (which is my regular habit), because it hurt too much. Fortunately, that sensation subsided, though my right ear still does not feel back to normal. Even today, I often have to hold the receiver a little bit away from my right ear, so that I don’t feel pain.

About a week ago, I began taking the Opcon-A drops again. Doing so has significantly reduced the pain but has not made it go away.

It has been over two months since the incident with the liquid nitrogen. Since that moment, I have had a litany of issues with my right eye and the surrounding area — which in turn has caused a chain reaction of problems in my life:

1. For starters, I have become hypersensitive to light. This hypersensitivity in turn has made it difficult for me to work on my computer — which, considering that I am a professional writer, has serious consequences for my ability to work.

This hypersensitivity also has made it challenging, and potentially dangerous, for me to drive at night, as I often have gotten a shot of pain in my right eye from the headlight glare. There are numerous other, very basic, ways that this hypersensitivity has made it uncomfortable for me to function. For example, I am still experiencing on-and-off difficulty looking at people and objects, especially when they are right in front of me.

2. As I mentioned above, I also have had to deal with pain in my eye and the area surrounding it, in the onset of headaches — which in turn has had its own set of consequences.

3. I have shelled out hundreds of dollars for doctor appointments, body work appointments, pharmaceutical medications, and supplements, in the interest of healing my eye. I also have lost a significant number of hours of work time, so as attend appointments, pick up treatments, or just lie down because I’m in too much pain.

4. I have not been able to wear contact lenses for two months. While this is certainly the least of my concerns, it nonetheless has had an impact on my appearance, and therefore, on my ability to feel at my best.

At this point, I believe that alternative healthcare is the only thing that will help me recover fully. Clearly, my nervous system was triggered and is now out of balance. Acupressure, acupuncture, and the like specialize in restoring that balance. I neither have the funds to cover this expense, as it is uninsured, nor do I feel that I should be the one holding this financial burden, given the circumstances that caused this condition.

While I have no interest in suing for damages, I do feel it is only fair for you to cover the costs associated with my recovery. I assume you have an insurance policy to assist in situations like this. Please put me in contact with your representative.

Sincerely,

Loolwa Khazzoom

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