Be the change you want to see…

I decided to remind myself of the so-called stages of change, as I re-focus on making changes as prescribed by the naturopath. This process of eliminating sugar and refined grains from the diet has been a process that strongly reminds me of smoking cessation. I cannot remember how many times I “quit” before that event actually occurred 12 years ago and I could call myself a non-smoker.

Behavioral changes, as my naturopath reminded me, are notoriously difficult to conduct yet, when it comes to creating good health, imperative and worth the struggle.

The “Stages of Change Model” was originally developed in the late 1970’s/early 1980’s when researchers were studying how smokers were able to give up their habits and/or addictions.

Since then, the model has been applied to a broad range of behaviors, including weight loss, injury prevention, overcoming alcohol, and drug problems, etc.

The idea is that behavior change doesn’t happen in one step. Rather, people tend to progress through different stages on their way to successful change and each of us progresses through the stages at our own rate.

People must decide for themselves when a stage is completed and when it is time to move on to the next one.

So, as a refresher for me and for those who are unfamiliar with them, here are the aforementioned stages:

1. Pre-contemplation – One does not yet acknowledge there is a problem behavior that needs to be changed.

2. Contemplation - One acknowledges there is a problem but isn’t ready or sure of wanting to make a change.

3. Preparation – Taking the necessary steps to make the change.

4. Action – Actively changing the problem behavior.

5. Maintenance – Maintaining the behavior change.

For information and resources, visit www.addictioninfo.org/articles/11/1/Stages-of-Change-Model/Page1.html

I never met Julie, yet, I wrote to her nearly every week for almost two years. Interspersed among our communiques were the occasional e-mail and telephone conversation. We were pen pals, you could say, of the old-fashioned sort.

My husband was mystified as to why I would commit myself to someone I’d never met. At first I didn’t understand either. Now, however, I do.

Julie was my first “assignment” with ChemoAngels, a volunteer-run cancer support organization that utilizes snail mail to uplift participants. I had come across the program while doing an online search and something about it pulled me in. I’m a writer with a desire to make a positive difference. Well, I thought, opportunities don’t get any clearer than this.

Here’s how it works: The ChemoAngel program takes volunteers and connects them with people - young, old, male, female - who are undergoing chemotherapy. One type of “angel” sends weekly boxes full of gifts - small tokens to fulfill the mission of support. The other kind is a “card angel,” someone who writes every week to fulfill the same mission. I signed on to be a card angel.

I first wrote to Julie in August, 2006 knowing only basic information. I knew she was five years older than I, for example, and knew she had lived in New York - my home state. I would later discover she was an actor and had claimed the Big Apple as her home while striving to make her mark. She was living in Florida at the time I began corresponding with her and had been battling ovarian cancer already for two years.

As a ChemoAngel you’re cautioned not to expect or ask the person you’re writing to to write back. If you hear from the person, well, that’s frosting on the cake. I was thrilled to hear from Julie right off the bat and discovered in our exchanges that we had similar interests. Writing to her was easy, like communicating with an old friend.

For awhile Julie did well. She was optimistic and tentatively planned what she’d do when she was told the cancer was gone. As time passed, however, the cancer kept returning and her doctors tried version after version of chemo cocktails to destroy it.

Often when I heard from Julie, her frustration level was palpable. How could it be otherwise? She was told to keep a positive attitude yet aggressive treatments weren’t working. I tried putting myself in her place but all I could feel was fear.

I remember one conversation in which she said to me, “I don’t want to die.” That sentence rattled me. Being just five years her junior, I completely understood that notion. There’s so much life ahead, so much to do and see, I thought. Of course you can’t die, I thought.

I wanted to inspire Julie, to shake up her healthy cells and knock the cancer right out of her via my letters…somehow. I had hope. I even enlisted the assistance of my mother, an avid church-goer, who made a prayer shawl and sent it to Julie. I have a photo of Julie, wearing her favorite blonde wig, wrapped in that precious prayer shawl.

But a few months ago Julie’s e-mails to me stopped and I got a letter from Julie’s mom who said Julie had experienced “a bump in the road.” My e-mails, she said, should be directed to her account, not Julie’s. I knew then that things had gotten bad.

A few days ago I received an e-mail from the ChemoAngels admin person notifying me that Julie had died. I had to read that message over and over until it sunk in. Then, wanting more information, more details, I did a search and found Julie’s obituary. There she was, her picture, a head shot, placed next to her life’s summary. Dancer, actor, lover of life and animals, beloved daughter, sister, friend. I think part of me had believed it wasn’t true. But there’s no arguing with an obituary.

It seems strange that I could mourn someone I never met. Yet I find myself doing exactly that. I keep coming back to how precious life is and how very brief. We move from day to day thinking nothing of our mortality, thinking we have time, time and more time. Then something happens. Sometimes we’re blindsided, like Julie, healthy one minute, struggling for life the next.

I am grateful I had the opportunity to connect with this tenacious woman and know without doubt that my life will not be the same.

Bless you, Julie, wherever you are.

A study cited in a 2003 issue of the medical journal The Lancet would suggest so. The article compares a specific amino acid sequence found in Candida cell wall protein to a gliadin amino acid sequence that triggers the immune response in celiac disease. Researchers found that the sequences are “identical or highly homologous to known celiac disease-related alpha-gliadin and gamma-gliadin T-cell epitopes” and they propose that candida is the trigger for celiac disease. The immune system can confuse gluten found in grains for the cell wall of the Candida and then mount a response against the gluten! The immune cell bound gluten then damages the small intestinal wall as in Celiac Disease.

Here’s the abstract (Lancet. 2003 Jun 21;361(9375):2152-4):

“Is Candida albicans a trigger in the onset of coeliac disease?” Nieuwenhuizen WF, Pieters RH, Knippels LM, Jansen MC, Koppelman SJ.

Coeliac disease is a T-cell-mediated autoimmune disease of the small intestine that is induced by ingestion of gluten proteins from wheat, barley, or rye. We postulate that Candida albicans is a trigger in the onset of coeliac disease. The virulence factor of C albicans-hyphal wall protein 1 (HWP1)-contains amino acid sequences that are identical or highly homologous to known coeliac disease-related alpha-gliadin and gamma-gliadin T-cell epitopes. HWP1 is a transglutaminase substrate, and is used by C albicans to adhere to the intestinal epithelium. Furthermore, tissue transglutaminase and endomysium components could become covalently linked to the yeast. Subsequently, C albicans might function as an adjuvant that stimulates antibody formation against HWP1 and gluten, and formation of autoreactive antibodies against tissue transglutaminase and endomysium.

I met a woman who knows she has celiac yet continues to eat wheat. She has a lot of excuses, from a fixed income to a boyfriend “making” her eat this way. She recently contacted me and told me she was afraid because she heard of someone dying from complications from celiac. I wondered if her fear would motivate her to change.

Going gluten-free, I can so empathize with this woman’s challenge. I slipped a few days ago, wanting so badly to taste a “real” brownie again. However, my body, being a powerful communicator, let me know it didn’t appreciate the event.

Ultimately, though, this question came to me: If you know certain actions will lead to self-injury, why continue to engage them? I smoked when I was younger but didn’t give it up until I had a hard time breathing after walking up a flight of stairs. For a long time, I lived in denial. How else could I have continued to put such terrible stuff into my lungs?

I believe a lot of people live in denial. It feels easier there, less threatening and scary. But the safety it offers is an illusion. Living in denial is dangerous, like playing Russian Roulette and hoping that this cigarette, drink, doughnut, or whatever your vice, won’t carry a bullet that destroys you. But every puff, sip or bit carries the possibility of just that. How crazy and self-destructive is taking that chance?

Yep, it’s crazy but I can identify with that craziness. And I bet so can you. That’s why I can’t judge the woman who reached out to me. She’s on her own journey and all I can do is share what I know and wish her the best.

I have spent the last month immersing myself in all-things-celiac to understand as much as I can about the condition. Someone said to me early on that there’s a six-month learning curve after diagnosis. At this point I can certainly attest to that statement. Gluten, it would seem, is everywhere.

In a few days I’ll also have my children’s blood tested. I’d like to have the genetic test done but will have to talk more with the pediatrician about this notion. I pray my kids don’t have it but am prepared to do what we need to should a positive result arise. Giving up wheat is an easy solution when one considers what’s involved with the treatment of so many other health conditions.

I’m also relieved that we have a pediatrician open to discussing the subject. I’ve heard so many horror stories from others regarding their docs not listening or just being plain ignorant about the condition. One woman told me that when she complained of symptoms and asked to be tested for celiac (after having searched for info online) her doctor told her she absolutely did not have the condition and then prescribed antidepressants. Nice.

Stories I wrote for the Syracuse Post-Standard came out today (www.syracuse.com - search for “celiac”). It’s interesting that I pitched the idea for the stories prior to learning I had the condition. Now I want to broadcast the details to all who will listen. Guess that’s the way it is with any “newbie.”

I’ve noticed that I tend to keep to myself about celiac when around extended family. After initially sharing the news and suggesting family members get tested because of the genetic link, it’s clear they don’t want to hear about it.  C’est la vie.  If I could make them take care of themselves and be proactive, I would. However, we’re all adults and we each make our own choices and all I can do is live my best and be a positive example.

Finally, about my eyes, I did get good news at my last retinal doc visit. There was improvement following three days of solumedrol infusions and a re-start on zenapax. They’re trying it at a lower dose this time (50 mg) to see if I’ll tolerate it better.

Here’s to second chances.

As results would indicate, I have tested positive for celiac. Now, does this mean birdsht caused this or vice versa? As I look back on my history, I suspect celiac was the culprit all along and was what triggered the birdshot. The naturopath I’m working with seems to agree.

A very disheartening experience with my primary care doc, however, left me feeling at first frustrated, then enormously angry. When I said this whole process was certainly an education, his response to me was, “Well, you’re the one that wanted me to test you for this.” And that means what exactly? That if I chose to be in denial about it it wouldn’t be a problem? Nice line of thinking that.

It should come as no surprise that he wasn’t interested in hearing about the naturopath or about all the information I had gained about celiac. And after connecting with many, many people who have celiac, the song is the same. In light of this, I am completely mystified. Why wouldn’t a physician want to work with a patient, as opposed to dictating to a patient like a parent to a child?

It is very clear to me that my body is very sensitive to gluten. After taking it out of my diet then trying it again, there is no denying the very obvious symptoms such as mouth sores or severe joint pain. And then there’s the increase of eye flashing and floaters.

So from here on out, I’ll eliminate all things-gluten from my diet and focus on, hopefully, getting healthy again.

There are, certainly, no dull moments.

Here’s an excellent article from the New York Times on facing chronic illness and balancing it with the workplace. Do your co-workers need to know? The answer is subjective.

Life’s Work: I’m Ill, but Who Really Needs to Know?
By LISA BELKIN
Many Americans struggle to decide whether or not they should inform their boss or colleagues about a chronic illness.

I visited with Doc Foster and the Entourage (coming to a medical facility near you!) on Feb. 9. It was a visit I wasn’t necessarily dreading but one I knew would bring me news of a vision change.  Here’s the short version as to why:

I had received a call from the retinal specialist who noted my white blood cell count was low. As a result, she took me off the CellCept to give my body a break. In the interim, the only immunosuppresent I was (still am) on is zenapax.  Ten days off the CellCept there was a marked change in my vision.

Simultaneously, I had reintroduced wheat back into the diet and was awaiting the Celiac test. The wheat reintroduction was a disaster - I had a list of blatant physical reactions from eating wheat, whether it was cookies or Triscuits. Yet, I found myself craving it after reintroducing (another sign of food sensitivity).

Ah, but I digress. Back to the Feb. 9 visit.

After an initial exam, tests were ordered (the dreaded fluorescein angiogram) and it was clear that the macular edema and vasculitis in both eyes was, as Doc Foster put it, “ferocious.”  The old flatterer.

I’m due for the next round of zenapax this Thursday, Valentine’s Day, and am trying to figure out if I will actually go through with the three straight days of recommended solumedrol (IV steroids again) to “kick start” the zenapax. What’s a gal to do?

Meanwhile, the mystery for me is the food aspect. I’m told that with wheat intolerance, the body cannot process the wheat protein and somehow perceives it as a foreign body that needs to be eradicated.  Thus, an autoimmune response is triggered. Is it then fair to assume that my eating wheat again, for ten plus days prior to my Feb. 9 exam, had a hand in the vision degradation?

I feel like I’m in the middle of a science experiment gone wrong. Or perhaps this is payback for not paying attention to Mr. Fedak’s 10th grade biology lessons…

Regardless, the ride sure is an interesting one.

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.