Be the change you want to see…

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.