About two weeks 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 follow-up letter I wrote about the wart removal from hell. Dr. C.’s behavior was outrageous and inexcusable, and half a year later, I’m still suffering from the consequences. To his credit, though, Dr. C. did take immediate accountability for his actions and apologize — first by leaving a message on my voicemail, then by sending a formal letter.

In our lawsuit-happy society, that shows a lot of integrity. Dr. C. responded in an ethical way, by owning up to his mistake, instead of scrambling to cover his ass.

January 31, 2008

Dear Dr. C.,

I honor the courage, integrity, and compassion you demonstrated in your phone call a couple of weeks ago and in your recent letter. I know it is not easy to admit to someone that you made a mistake and to apologize for it, especially when you know that person is angry about your behavior. So I really thank you for that, and I accept your gracious apology.

I’m sorry I did not get back to you sooner, but things have been a bit overwhelming recently. On that note, I wish I could tell you that the experience amounted to a bit of a fright and nothing more, but unfortunately, my right eye has not been okay since the incident.

As I mentioned in my previous letter, right after you poured the liquid nitrogen, I felt a mild stinging in my right eye. I didn’t immediately connect it to what happened, because my focus at the time was on protecting my legs from the liquid.

When I went shopping afterwards, however, the stinging persisted, and I felt other unusual sensations that were difficult to describe right off the bat, but left me feeling that something was wrong with my eye. Those sensations also persisted, and some of them got worse.

As I said to the on-call doctor I talked with that night, I experienced not exactly blurriness of vision, but something more akin to a very fine mist or film in front of my right eye. I also felt a nerve sensation extending towards my right ear and toward the right side of my nose, and I felt a mild sense of of disconnect, or laziness, in my right eye.

I wanted to know if I could wait until the next day to see a doctor, or if I needed to get to an emergency room that night. The doctor said that if there was any speck of liquid nitrogen that had touched my eye, my tears had washed it out by that point, so it was just a matter irritation and okay to wait until the next day. He advised me to see an ophthalmologist, which I did the next day.

Meanwhile, that night, I found that watching television hurt my eyes, to the extent that I had to turn it off, and I also found that I was sensitive to light — both of which were unusual experiences for me. I also felt a faint sense of pain when I closed and opened my eye — like there was a mild irritant on the bottom center of my right eye.

That pain was gone the next day, and when I saw the ophthalmologist, I was relieved that the exam showed my eye to be normal. I assumed that my eye was just irritated, and that all the strange sensations would go away in the next day or two.

While the mist/film sensation did go away within several days, and while the hypersensitivity to television (and, as I discovered, the computer) decreased somewhat over the next several days as well, I still felt the sensation of my eye being disconnected or lazy, and the nerve pain was getting worse.

On Tuesday, January 15, I called my mother’s optometrist and told him what was going on. He suggested that I use hot and cold compresses several times a day, to see if it would help with the irritation. I immediately started doing that.

Next, I called my bodyworker, who is a combination of cranio-sacral therapist, acupressure therapist, and nutritionist. The next day, she called back and advised me to take an anti-oxidant formula, which I began taking right away. Meanwhile, I booked her next available appointment.

The compresses (three hot and one cold compresses, in both the morning and evening) and antioxidant formula helped tremendously, as did the bodywork session. Within a couple of days, the constant nerve pain subsided dramatically. Within a week after that, I was able to get by without too much irritation, when only using the compresses in the evening. Though my eye was not yet back to normal, it was improving.

This past Monday, however, when the corner of my right eye was itching, I lightly rubbed my finger against it. I felt immediate pain and hypersensitivity in that corner and the area surrounding it. The hypersensitivity has not left. In addition, the pain got worse — pain in my actual eyeball, as well as the previous nerve pain extending to my nose and ear.

I also began feeling an on-and-off sensation of glass in the upper right side of my eyeball, and today, my eyes have been crazy sensitive. For example, a few times when someone stood close to me, it physically hurt my eyes to look at that person.

My eyes have never been a problem for me, and to be honest, I’m feeling a lot of distress about what’s happening. I suffer from chronic pain as it is, and now I have yet another pain issue complicating my life. Among other things, it is affecting my ability to work, is taking time out of my days, is putting me further into debt, and is leaving me anxious.

I’m assuming that either a speck of liquid nitrogen or the vapor from the liquid triggered a nervous reaction in my right eye. I don’t know if it’s something that Western medical instruments can pick up, or if it’s something that can only be addressed through Eastern medicine. I have scheduled another ophthalmology visit, as well as additional bodywork, to try and figure out what’s going on.

I appreciate your concern, and I’ll keep you posted on how things go.

Best,

Loolwa Khazzoom

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She is the founding editor of one of the most informative and impressive websites on chronic illness — including but not limited to chronic pain. Not only is her site geared toward young women like me, but it comes in a candy-striped pink package! Rock on. In this interview, ChronicBabe’s Jenni Prokopy talks shop about living and working with chronic illness.

Loolwa Khazzoom: What was your life like before fibromyalgia?

Jenni Prokopy: Before my diagnosis, I was athletic and very active. As a full-time magazine editor, I worked long hours and traveled often; and in my free time, I produced a ‘zine, Buffalo Speedway, that was fairly popular.

It wasn’t uncommon for me to pull all-nighters, and I had plans to write a novel and become a globe-trotting investigative journalist. Right around the time of my diagnosis, I was doing some non-profit work with an agency that serves people with disabilities, so luckily I had access to information about my rights career-wise.

LK: How did fibromyalgia change your life?

JP: My fibromyalgia diagnosis rocked me to the core. One doctor told me to “take Advil and get ready for a life of pain.” It was an awful time. I felt incredibly confused, alone with my illness, and unsupported. Coincidentally I had just broken up a long-term relationship, so that compounded my fears and anxiety.

Those first few months were wretched. I found myself grasping at anything that felt “normal” and forcing myself to stay highly active; I refused to accept that I needed to slow down a little.

LK: How did suddenly having a disability affect your capacity to work?

JP: I continued to work a full-time job for years after my diagnosis. At one job, my boss wasn’t very accommodating. Any time I had to take time off of work for a doctor visit or test, she would make me take a half day, even if I only needed an hour. Soon all my sick leave was gone and I had to use unpaid FMLA (Family Medical & Leave Act) time.

A job change resulted in a much more understanding boss, who gave me lots of flexibility. But I worked much more and traveled extensively, so I still struggled to manage my symptoms. I still couldn’t fully accept the reality of my limitations.

When I married, I took advantage of the opportunity to join my husband’s insurance program and jumped ship to start my freelance writing career. That was six years ago! The flexibility schedule-wise was very attractive, and I wanted more say over my income; I knew I could make much more money freelancing (eventually).

LK: How did you turn your chronic condition into a package career — writing, speaking, consulting?

JP: That was an accident, truly. I started ChronicBabe.com as a blog, a hobby - a way to share my experiences with other young women. When I was diagnosed, I felt alone and confused, and the online resources I found sucked, frankly, so my goal was to share my perspective with others like me so they wouldn’t feel as alone as I did. This came about after years of working with multiple doctors, and coming to a place of acceptance regarding my illness.

The reaction to the site launch was swift and strong, and through work with a business coach I realized I wanted to shift my career focus from just freelance writing (about construction) to writing, speaking, consulting — all around health issues.

Now I run the web site; I offer freelance writing and editing for health care organizations; I speak to groups about healthy living despite chronic illness; and I have a few more tricks up my sleeve. My clients are spread across the U.S.

LK: Does your empowerment, through your work and in general, make people doubt how serious and debilitating your illness is?

JP: Yes. A colleague told me recently, “You seem fine all the time, so I forget you’re sick.” In some senses, that’s great; I don’t want people pitying me or viewing me as “damaged goods.” On the other hand, when I do feel bad, people are sometimes shocked and respond in an incredulous manner. They have a hard time imagining that I can be disabled and still look “normal.”

It’s a huge issue in the world of “invisible illness”: Unless you look awful, people don’t always believe you’re as bad off as you tell them. I don’t know how to change that, except to keep living my life with authenticity (honesty about my condition) and hope that people see me for who I am, in the whole, and that they remember it the next time they meet someone who has chronic illness. I can still be a hottie and feel like crud; they’re not mutually exclusive.

LK: Because you’re so empowered and out there in the world, do you ever get faced with reactions of, “Oh she’s just doing this to get attention”?

JP: Again, yes. In fact, I once almost lost a life-long relationship when a relative told me she believed I had created ChronicBabe just because I was needy and wanted attention. Thankfully, we’ve resolved that “difference of opinion,” but the residuals stick with me.

I’m very aware that some people think I just want attention, and at this point, I do want some attention, so that people see there are women out there who are doing their best, in spite of being dealt a bad hand. But I don’t need attention personally. I have a wonderful husband and an excellent circle of friends and family who are highly supportive.

LK: How did your disability initially impact your ability to survive economically?

JP: At first, I worried I would have to stop working. But working with the folks at the Rehabilitation Institute of Chicago, I’ve learned so many strategies about coping that I know that no matter how bad my symptoms are, I will always find a way to work.

It does make things hard sometimes, though. Now my goal is to make ChronicBabe into a money-maker so I can continue to do this positive work and live comfortably. It’s a challenge, but as with building a freelance writing career, it just requires steady work; and I know it will pay off.

LK: How has ChronicBabe grown over the years, and how has its existence and growth changed your life?

JP: We’ve gone from being a small blog to being a large web site, with thousands of visitors and page views a day. Emotionally, it’s been incredible. I feel more supported than ever, because I have fans. (That’s so weird!) I love my work, so I’m enjoying it more than ever. But I work harder than I ever have, too, because I’m passionate about it.

Being so open about my illness makes me more accountable for my self-care and other actions, as well, which I think is good. If I write one day about reaching out for help, and then the next day I’m laying on the couch feeling lonely and sorry for myself, I’m a hypocrite; so I’m actually much better at caring for myself now. Because I know more people are paying attention and are going to call me on my b.s.

In 1997, at the age of 25, Jenni Prokopy was diagnosed with fibromyalgia. Soon after came diagnoses of asthma, anxiety, Raynaud’s phenomenon and GERD. She created ChronicBabe.com in 2005, to provide an online community for younger women with chronic health issues who want to be at their best. 

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Medical training leads us to believe that the human body is a walking time bomb. At its best, conventional medicine tries to figure out what’s going to blow up first, then head it off at the pass before it gets too serious. We call that “preventative medicine,” and we think that it’s state-of-the-art. (more…)

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I recently wrote an article on energy healing, for Massage & Bodywork magazine. As part of this article, I interviewed my all-time favorite body worker and nutrition consultant, Anasuya Batliner, on the topic of natural pain relief through energy healing and nutrition.

Loolwa Khazzoom: When I say energy healing, how do you define that? What does that mean to you?

Anasuya Batliner: I think about the movement of Chi in the body. Sometimes it’s easier to detect when things are not moving. The whole goal of energy healing is to not have things get stuck or pooled or stagnant, but to keep the movement.

So to me, a lot about energy healing has to do with allowing for freedom of movement. And I think about it in terms of using an intention to help move the energy. I feel as if it has a lot to do with the subtleties of thought and vitality, and how they naturally have places where they get stuck and places where they move.

LK: And when you say Chi, what do you mean by Chi? For somebody who doesn’t really have a lot of exposure to this, how would you define it?

AB: Chi is loosely defined as a vitality, life force, energy in the body, and sometimes it’s easier to define it by what it does. It has the ability to transform things in the body - for example, it can transform food into vital substances you can use. Chi has the force to move things from one place to the other in the body. It shines when there are adequate amounts, and it also protects the body from outside forces.

LK: And when you say it shines when there are adequate amounts, what do you mean?

AB: Well, when you have a lack of Chi, sometimes there’s almost a dullness in the skin or in the eyes, or in the affect. So Chi is energy and light and shine.

LK: It was interesting when you said that energy also transforms food. I always think of energy as something that’s really abstract for most American people to understand. But then when you think about it, there are calories, which are energy — food turning into energy. So can you maybe tap into that a little bit and just share the connection between energy as this kind of abstract sense that one picks up, and energy as something that’s more tangible in the physical, scientific world?

AB: There are so many different aspects of our metabolism that are happening all the time. As a nutritionist, I think of the fact that we use nutrients to make enzymes. Enzymes are catalysts that in turn make certain processes in the body happen. For example, we can change one chemical in our body to the next chemical.

Then there are all these pathways, a multitude of pathways that are all interwoven in our body. They’re all moving, constantly being transformed from one substance to the other in our body, so that everything gets what it needs. And the energy of that transformation is Chi. So energy is not something that’s happening in a sort of irrelevant, rarefied atmosphere, but it’s something that is happening millions of times within each heartbeat.

LK: That’s amazing. Something I never thought of until this very moment is you can think of energy from a nutritional model too.

AB: Right.

LK: Can you say a little bit more about this connection? You do a lot of nutrition consulting for conditions like chronic pain. In what way is the nutritional practice that someone takes on in their lives a form of energy healing?

AB: Eerything that we eat essentially comes down to plants, even if we’re eating animal products; the animals lived on the plants. And what do the plants live on but sunlight, water, and air. We’re eating those plants. So that’s our way of getting a material form of sunlight into our body. That’s our way of getting that energy into our body.

With science, you can say OK, well, there are all these different forms. There are oxygen and carbon dioxide. There are proteins and amino acids and lipids and carbohydrates and minerals and vitamins — all just slightly different forms of this sunlight and water and air. And in our body, all this energy is constantly interacting and moving and changing and transforming, so that we can replenish ourselves and grow.

So whenever people are engaging in their nutrition, consciously cooking healthier foods, they are thinking a little bit more about what they’re eating. They are engaging in that kind of energy, where we’re giving the body more of what it wants, so that more of those energy transactions can happen.

LK: What I’ve experienced with nutrition is it’s not just the food that I’m eating, but there’s almost an entirely different orientation in my energy field. It’s almost this thing of the connection between intention and energy. So while I’m transforming the energy reactions going on in my body by having different nutrition, I’m, also creating a different orientation in my life — a different feeling, a different sense of my body, towards my body, towards my life.

When I’m “on it,” I wake up and create the space and place for me to have food. I have a nutritious meal that involves protein and vegetables and grains. I balance out a diversity of foods. I take time to cook, and I buy from a farmer’s market.

The sense I get at a farmer’s market is that it’s not just that I’m going to Safeway and buying some food that’s all in little cans and rows — with everything very anal. Instead, I’m buying from the actual people who are growing the food, the farms that are making it straight from the dirt. It tastes better; it’s fresher; and there’s a human interaction — a culture that’s at the farmer’s market. It feels like all of those things just add to the energy around my experience of food, and that in itself creates a sense of healing in addition to the food itself.

Can you speak a little bit to that, and again back to this relationship of energy on different levels — the physical, scientific, chemical energy, and then energy that’s a little bit more esoteric or abstract.

AB: Well, I definitely agree about taking that time and shopping at places where the products are very close to where they just came out of the earth. You know, the people who grew it have a certain energy, and the selling of it has a more nurturing feel to it than when there are a lot of middlemen in there.

I’m reminded of this book called Tending the Wild — about how for thousands of years, Native Americans in California (I’m sure aboriginal people the world too, but this book was about Californian Native Americans) cultivated what we thought of, the settlers thought of, as wilderness. To the Native Americans, it was really a vast garden. The belief was that the act of people interacting with plants was really good for the plants and really good for the people. So there used to be a more intimate play between people and plants.

I think when we go to the farmer’s market, we’re really tapping into that; because we’re having a relationship with the farmers and a closer relationship with the plants. I think it goes beyond just getting the fuel into our bodies. I think there has always been a special relationship between people and the plants and animals that we eat.

Eating as close as possible to the plant source will preserve many of the nutrients, rather than eating things that are shipped across the country or have been processed and processed and processed until many of the nutrients are gone. So certainly that can be documented scientifically. But I agree that even some of the things that we can’t measure yet are going on.

We have a culture that tends to separate us out, but we’re not really different than nature. And I think having a relationship with plants — through people who grow plants and herd animals and such — gets us more in harmony with that.

LK: Why do you think we got separated out? Why do you think that our society has gotten so removed from this just very natural way of being?

Also, I keep thinking how our society has this obsessive need to be able to quantify something. When people talk about violence, for example, they always talk about it in very extreme form. It’s only considered violence once there’s been a rape or a murder or some kind of extreme assault. But I think that the violence starts way before — with an intention, an orientation, an energy — the way that someone is approaching another human being.

I talk about it in terms of the difference between someone being pushed down the stairs vs. someone falling down the stairs. It’s the same physical situation: You’re rolling down the stairs, and you end up with certain injuries. But I think that the depth of pain that’s felt is far more intense and severe if someone pushes a person.

AB: Right.

LK: And that, to me, is the place of energy. That’s the place of intention. That’s where you get into issues of spirit and psyche and emotions — which is all very real. So why is there this obsessive need to quantify things, or to be able to have something that’s tangible in a very kind of visual way - something that you can hold in your hands, point to, or count?

AB: I think that people moved from populations where they were able to live comfortably off hunting and cultivating in a natural landscape, to agriculture - where there was more accumulation of wealth. Then there were more power issues, which led to politics. There is something about the development of cities, coupled with the amazing, incredible capacity of the brain. Rather than being intimately connected to all the relationships in nature, we developed incredible arts and crafts, and eventually, a more urban culture.

And now, I think our brains are changing a lot, because we have a very immediate-orientated culture too. I don’t think it’s necessarily bad, but I do think it’s sad that we lose our connection. Our connections with nature are very different than what our ancestors had for many years.

I’m not sure I completely answered that part of your question, but I was also thinking about the difference between when you fall down the stairs and when someone pushes you. We are all connected, and when there is a push or an assault of some kind, there’s this pull in this web that we’re all connected through. There’s like some knot or pull that’s created when someone actually pushes you, because you still have that relationship with that person; but then there’s a betrayal of some kind in there. That in turn can really distort the whole web.

I think that in some ways, there’s a connection there. I think that as humans, we’re always finding our place in the world - our relationship within our immediate friends and family and within our larger culture and within nature. I think we’re always looking for our place, for where we belong, for how we can untangle whatever distortions there are.

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Here are my top 5 tips for writers with chronic illness:

1. Learn to adapt.

Change your schedule, your work patterns, your ergonomics, whatever it takes.

2. Know that change will be continuous.

What works today might not work next month, so be flexible!

3. Hunt for ideal clients.

Eat Ramen for a few weeks if it means you hold out for a great client — one who pays you $1 per word and sends the check 15 days after you invoice. Don’t settle for those $.10 a word folks who pay on publication six months later, if at all. This is not impossible, but it takes work to find those clients. Do it, and it will pay dividends for years to come.

4. Work on acceptance.

If you don’t accept some limitations, you’ll be fighting your body; and you won’t win. I’m not talking about giving up. I’m talking about learning to love yourself as you are today.

5. Remember that as you learn to deal with disability and/or illness, you are strong.

Every small success matters. Keep a journal or a diary of your successes, so you can remind yourself of how terrific you are during hard times. And build a support network to help you, including other freelancers in your area. You can help each other with business tips and emotional support.

In 1997, at the age of 25, Jenni Prokopy was diagnosed with fibromyalgia. Soon after came diagnoses of asthma, anxiety, Raynaud’s phenomenon and GERD. She created ChronicBabe.com in 2005, to provide an online community for younger women with chronic health issues who want to be at their best.

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