I met a woman recently…actually the timing of the connection was unbelievable but more on that later…who has birdshot, like myself. One of her docs suggested she get tested for Celiac Disease even though she wasn’t experiencing symptoms (well, other than liver enzyme issues, possibly pharmaceutically induced). She thought it was a strange idea and wasn’t expecting anything. To her great surprise, the test returned positive.

In conversation, this woman suggested that perhaps there is a connection between BSRC and gluten intolerance. I wonder. The test is on my list for my next blood test.

So, this got me thinking of the power of food, how it can make our bodies ill, heal them and keep them in balance. Maybe I’m a slow learner but it took me 40 years to get this notion, that what we ingest has a big impact on our overall wellness or sickness.

In light of this, I’ve been following an elimination diet as prescribed by a naturopathic doctor (Jennifer Orlowski, www.cnynaturopathiccare.com) for a few months now. The focus is on getting clean via the diet, which requires abstinence from sugar, wheat, dairy, eggs, citrus, coffee, alcohol. Just lots of veggies and fruits and whole non-wheat grains. I’ve been following it since Jan. 1 (toyed with it during the month of December) and all I’ll say is that it’s very challenging. I’m down something like 20 pounds from my highest point (thanks to a steroid-inspired eating frenzy…why some people take any version of that drug recreationally is just beyond me). However, yesterday I ate a bagel. And it tasted SO good. I wonder now if I’ll have to go back to square one. Oy.

In the meantime, I’m maintaining my focus on living and being well and kicking this eye thing into complete remission.

Wish me luck, friends.

Re-read that last post. Could it be any more full of self-pity? Gawd.

Time to moooooove on.

I wrote an earlier post on people who ask about how I am or how my eyes are doing, people who ask but don’t really want to hear any answer other than, “Fine.”

I bring it up again now because I just had another experience that seems to have sent me over the proverbial edge.

In the beginning of this whole go-round, I would respond truthfully when asked, only to see a look of disinterest wash over the other person’s face or, if speaking on the phone, hear the urgent desire in the other party’s voice to move on. So, I got to the point where I kept information to myself. I mean, why bother? I’m doing what I can. I know how I feel about all of this and I’ve gotten pretty good at picking up on when someone really is or isn’t interested.

So here I am this morning in the midst of a telephone conversation and finding myself lulled into responding to the very question. I reply with how I’m doing - I have conjunctivitis, left eye, that has occurred twice now in four months and it’s a royal pain.

The person couldn’t have changed subjects quickly enough.

Erg! Here’s a lesson to all of us: if we really don’t want to know the answer, don’t ask the question!

This scenario makes me angry, I think, because I feel vulnerable when I open up to people. When I get shut down conversationally like that, red flags go up. Why would I even want to share anything with that person?

If there is a lesson here, as I am told there is in everything, it is to be more careful. I have a precious few people to whom I can talk honestly and I’ll save my commentary for them.

Is that cynical or guarded? Don’t care. Cuz I’m…just fine.

After nearly being derailed by the holidays, I am now back on track. They were tough this year. Felt very behind.

I was also very, very crabby, which is so unlike me at this time of year. Usually the first sounds of holiday music and even the conspicuous consumerism make me smile.

This year, however, I was feeling angry. Why? Because I don’t want to have birdshot anymore. I’m done. I quit.

Now if I can only figure out how to send it back…

I began the zenapax infusions Dec. 28 at Albany Medical Center. I was a little nervous but it went fine. It took four hours, two of which were spent waiting, with a needle in my arm, for pharmacy to get the solution correct. Next round is scheduled for Jan. 11. And I’ll continue the go round every two weeks.

For now, it’s more wait and see.

In the meantime, here’s a quote I picked up online:

“It is my observation that the absence of anger in the face of a serious illness suggests that we have already withdrawn from life, that we have relinquished our passion for living, that we are resigned and emotionally numb.” - Linda Noble Topf, author of You Are Not Your Illness

I haven’t been writing about the blow-by-blows of my study experience and, in that regard, I have been remiss. Especially in light of the whopping news that I am out - that’s right, kicked out; officially extricated from the Merrimack trial because my eyes, it seems, have not been behaving. Guess I’m a nonconformist, right down to my retinas.

On the day before Thanksgiving, yes the busiest travel day of the year, I drove to MERSI in Cambridge for my monthly check-up. Two weeks prior, I had been weaned down to one 500 mg tablet of cellcept per day and shortly after that the symptoms flared. Going into this latest visit, I knew there was trouble brewing.

Long story short, Doc Foster declared I had relapsed and that emergency treatment was required. So, at 4 p.m. on Wednesday, still five hours from home, I sat on the 8th floor of 5 Cambridge Center and tolerated an I.V. treatment of solumedrol, a.k.a. high-test steroids, that nearly made me sick. The reasoning behind the treatment was, essentially, to kick the inflammation in the pants and give me some wiggle room until the next line of treatment was figured out. Still, it caught me completely off guard and I remember feeling a wave of panic come over me. But, thanks to my new friend Tammy from Maine, who happened to be seated in the chair next to me undergoing the exact same treatment for the exact same condition (must I interject the irony here that birdshot is rare and that this circumstance equally so?), I had a chance to release a little stress and emotion and get my head straight. (Thanks, Tammy!)

The plan for the next treatment is Zenapax ala I.V. infusion administered every few weeks until remission. That’s the goal. In this regard, I have yet to communicate with the insurance company and I hope that it will all work out according to plan. Cross fingers.

Intellectually, I understand that this is the next course of action and I’ll pursue it. Emotionally, well, that’s a different story. I’m nervous, of course, about this new drug and scared about what it will do for my vision and to my body. And then there’s the concern about the financial impact on my family, should that arise.

But, in the end, I have to make the best of this new section of the journey, just like all of the tricky steps that came prior because I refuse to dwell on things I cannot change. It is what it is what it is and the best way out is through (thank you, Robert Frost).

And even though I’m out of the study, I’ve decided to keep this blog going. It’s become a helpful place to vent and to steer people who have questions about the birdshot and I’m grateful for the platform.

I’ll check in soon, you lucky kids. In the meantime, peace.

For some reason I’m only finding this out now, even though the research was published in January 2006. Apparently, I didn’t want to hear it then.

Here’s the link to the CBS News story: www.cbsnews.com/stories/2005/12/06/earlyshow/contributors/emilysenay/main1100000.shtml

And here’s a paragraph that smacked me upside the head: “The researchers say sustained higher-than-normal levels of certain immune system chemicals called cytokines have been linked [to] long-term inflammation implicated in a variety of illnesses, including heart disease, osteoporosis, arthritis, type 2 diabetes, certain cancers, Alzheimer’s disease, and periodontal disease. “

All I can say is, oy.

My friend Laurie is an Oprah devotee. I know without doubt that following an especially insightful broadcast, I’ll receive an e-mail saying, “Oprah had on so-and-so and their book/movie/schpiel was really interesting…” Sometimes I’m interested, sometimes not. After reading my pal’s latest Oprah-related e-mail, I’m happy to say the subject was definitely a memorable one.

Recent Oprah guest Dr. Christianne Northrup, gynecologist extraordinaire and author of Women’s Bodies, Women’s Wisdom, apparently has a new book out entitled The Wisdom of Menopause. Now, the reality is that every woman, like it or not, will eventually have to think about this momentous life-changing event. Fortunately, my friend and I haven’t gotten there yet. But Northrup’s larger assertion, that our bodies communicate with us in a variety of ways - the loudest of which is through illness - does apply to us and it was what captured my friend’s attention. Here’s a small piece of what arrived in my in-box this morning (the section in quotes is apparently taken from the Oprah show web site):

Dr. Northrup says your health depends on what’s going on with your mind, body and soul, and your symptoms are actually your soul’s way of bringing deeper issues to your attention. “You’re in labor with yourself because everything that no longer serves your highest purpose and your optimal health starts to go away and your body gives you signals €”‘Hey, you’ve been putting too much stuff under the carpet emotionally, nutritionally, not exercising putting everyone else first. The kids, the husband, the job, whatever,’” Dr. Northrup says. “And your soul is saying, ‘What about me? What about me?’ And your body will start getting symptoms to hit you over the head with till you wake up.”

When I read that, it completely resonated. After everything I’ve been through these past two years - the medical experiences, the therapy, the large volume of reading, and the connections I’ve established with holistic/alternative healer types - I completely believe that illness is a suggestion made by the body/mind/spirit (call it what you will, it’s all connected) that something is amiss and needs addressing. Illness, I have come to believe, carries a higher message that may not even be just for us but for those around us, as well.

Now I can’t profess to know the workings of the Universe - wouldn’t that be nice? But I do believe the suggestion made by another Oprah favorite Gary Zukav (Dancing Wu-Li Masters; Seat of the Soul), as well as many others who have come before, that our experience of this life is about learning. We’re here, I believe, to learn and grow spiritually and every single person we interact with and every life experience we have can help us do that if we are aware and choose that option. Of course we can also stagnate, which so many of us do. That, also, is a choice. Either way, I know for certain that I am still learning and I hope it continues until my time to depart arrives.

On that note, I send out a great big “thank you” to my smart, witty, wonderful friend whose message today made a big impact. Bless you.

I remember years ago watching a news special about traditional Chinese medicine (TCM). In the story two women had recently been diagnosed with similar forms and stages of breast cancer and were filmed visiting a TCM practitioner. One took the advice literally and followed the guidelines, which included eliminating alcohol, coffee and dairy and altering diet in other ways. The other woman followed the advice sometimes, allowing herself to have a glass of red wine and cup of coffee when she desired. In the end, the woman who was stringent was okay and did not need further treatment, while the other had to undergo surgery and chemotherapy.

For some reason this show stuck in my mind and I am grateful because it inspires me to follow another path. This is especially important because I am beyond tired of taking medicines and sticking myself with needles. I’ve been recalling rules provided by a holistic nutritionist I visited with earlier this year - no sugar, no white flour, no alcohol, no dairy and limit the caffeine. And don’t forget - lots and lots of fresh veggies, especially greens. Sound familiar? It has taken me a long time to view food as a means of healing as opposed to just filling the tank, so to speak. That a green leafy salad or a bowl of asparagus could improve the health of my blood circulation, for example, is remarkable and I don’t know why it’s taking me so long to make a complete transition. Change is hard, yes, but come on already. We - especially women - are so busy starving ourselves or eating in so many whacked out ways just to fit some warped societal fantasy of beauty that we completely skip over health. How did that even happen?!

I’ve been reading a great book called The Hip Chick’s Guide to Macrobiotics that presents the subject matter in an easy-going, relatable, yet informative manner. I like the notion of food as energy and, therefore, whatever food we ingest we also ingest its energy. Cool. If you eat sludgy crapola that’s exactly how you’ll feel. The author provides recipes and suggestions on how to make the journey and I’m soaking it in.

I also recently began seeing an acupuncturist/TCM practitioner and am fascinated by what I’m experiencing. Laying on a table with small needles sticking out of you as soft music plays in the background is quite an interesting occurrence. Though I’m visiting this woman for help with my vision, the treatment she gave me last Friday knocked out hip pain I had been having. The difference made a complete believer out of this cynic.

With regard to the vision and study, I’m holding steady. Per the latest test results and the doc’s recommendations, I’m now off all meds except one. I’ve had some floaters reappear but even after an ERG test (the test that shows the big picture on what’s up with the condition) it seems that things are okey-doke. Bottom line is that I’m hearing good news and I’ll take it, thank you very much.

And that is what’s up with me in the here and now, friends. I’ll check in soon.

Until then…

I’ve been thinking a lot lately about politeness and etiquette. Strange, I know, but it does apply here, specifically in terms of health challenges and how much inquiring minds really want to know. When someone asks, “How are you?” - do they REALLY want to know? My experience has been, probably not. There is that polite exchange where social etiquette requires you to respond by saying, “Fine, thank you” even if you’ve just been disemboweled.

I find myself keeping my worries and concerns to myself these days and I wonder if I’m just being polite, if I’m in denial (my old friend), or if I just feel people don’t want to hear the real deal. My guess is that it’s the latter because I feel I’m pretty aware these days and I don’t remember ever being accused of being too polite.

Over the past two weeks I’ve experienced some intermittent flashing - strangely after too much caffeine - and the floaters in the left eye have gotten more noticeable and annoying. When these things occur it’s as if something drops down out of nowhere and smacks me upside the noggin, saying “Hello?! Did you forget? I mean, really!” Well, pardon me. Truth is I do forget sometimes. I’d rather forget all the time.

These reminders make me wonder if I’m doing something to cause their occurrence because things have been going well with the study. Admittedly, the past few months have been pretty crappy in terms of personal situations and I’ll spare you the details (there I go again). As a result, I haven’t taken good care of myself. There has been junk food, little exercise, and - gasp - the occasional glass of wine. It still hasn’t sunk in that I can no longer rely on my old coping/escape methods. At least smoking hasn’t been an issue for a solid decade-plus. So at least I have that going for me… (probably the only line I remember from Caddy Shack).

I refuse to beat myself up, however. I also refuse to make all sorts of “tomorrow promises”…I will do this, I will do that. Please. When tomorrow comes, I’ll decide. For now what is, is, and in this moment all is good.

So, how are you?

Weekly drives to Boston from central New York give me time to ruminate. Five hours, in fact, of time to think, ponder, consider, etc. This has been such a strange journey and I can’t help but think what it’s all for. Had I the crystal ball to see into the future or the answers to the Universal Way I wouldn’t have to ask but then I likely wouldn’t be here, either!

I’m at a stage where the docs tell me things are good. I am being weaned off the meds and am now down to 1500 mg of cellcept, 200 mg of cyclosporine, and 10 mg of prednisone - the lowest dose I’ve been on in many months. And the eyes are quiet; no sign of a flare. Could it be that I’ve actually received the protein and not the placebo? No one is willing to guess. But the docs all smile and shake my hand. Even though they don’t know who has the protein and who doesn’t their pleasure with the present results should be some indication, I suppose.

I often feel like I’m living a dual life. There is my day-to-day where I focus on my writing and the getting by and then there is this other world where I think in medical terms. I even have a separate group of people I interact with based solely on this condition and it sometimes strikes me as completely odd.

When I was first diagnosed with this condition several introspective friends asked me, “What aren’t you seeing in your life?” as if this condition were a manifestation of such a refusal. At first I would not go there, the notion of my being responsible for creating this too much to even consider. But I have since allowed that thought to come and go, open to any insight it may bring.

The reality is that there are some things I have refused to “see” that I am only beginning to acknowledge now and I wonder if it is, in fact, possible for the body to throw up a medical condition as a means of sending out the message, “Wait! Stop!” It is not unfathomable.

Anyway, I return to Boston tomorrow for another visit and more concentrated time in which to think. I’ll share more progress later.