More Than I Bargained For

The other morning, as I sorted through the Ziplock Freezer bag filled with Week 2 doses to find the proper dose for that date, I found myself tiredly thinking -- this is a lot.  It was an unbidden thought, a surprising thought...and I took a minute to acknowledge it.  

As time stilled, I realized, this is what everyone else is thinking, too.

I'm not sure why it mattered to me, but, I suddenly had the feeling that I was the absolute last to have that thought.

If I am honest with myself, the investigational study IS a lot more than I anticipated.  Maybe I just wasn't ready to admit that at first.  That's okay -- healthy, maybe even.

I have gone from feeling good most days -- the kind of good in which one doesn't even stop to think about the fortune of one's good health -- to having a growing list of...complaints.  

And while it is not what I expected, it is okay.

I am acutely aware of others in my life, in my community, facing serious and in some cases life-threatening health issues, and I want to be very careful not to complain too much about my self-inflicted situation.  (For those following along who want the details, the real deal, the update on how I'm feeling, check out TMI...2.)

While how I am feeling is not what I expected, it is okay.  I decided to participate in the investigational study for a number of reasons, and none of those reasons have changed.

That it is not what I expected is, if I think about it, sort of laughable.  And ironic, for if anyone should have known to expect the unexpected in a medical research study, it should have been me.  (For those new to my journey, my daughter was in a clinical trial for her peanut allergy.  While it ultimately freed her and changed her life, her journey was difficult in ways we never imagined.)  

It is also interesting, because in pondering the fact that this is not what I expected I have realized that even though I did not know what to expect, I expected something different than this.  I hoped for "best case" in which eating gluten would be totally fine -- a mere blip in my day, but I was also very much prepared for the "worst case," in which my consumption of gluten would be temporarily (I firmly and truly believed) very, very bad.  

While mentally preparing myself for the "worst case," I envisioned acute gastrointestinal distress shortly after each dose, lasting for four to six hours.  I envisioned then living with that terrible post-major-gastrointestinal-upset depleted feeling until it was just about time to take the next dose -- for the first few days.  I was prepared for the "worst case" to be truly awful, but I also anticipated that it would be over fast each time...

And -- truth be told, I really, truly did not honestly think that *I* would receive the placebo.  (And just to be clear for anyone new to my journey, it wasn't that I think I am special or anything, it was really all about the math.  Our daughter, who was in a clinical trial where 2 of the 9 subjects received placebo, was one of those two.   What would the odds be of ME being one of the 4 subjects of 12 to ALSO receive the placebo?  While I never actually did the math, I still felt it worked in our favor...)


As ridiculous as it sounds, even to me, it never occurred to me that there might be a "middle" road...a road in which I have never once been acutely ill (thankfully, I did not need the change of clothing I packed myself on the day of my gluten challenge), but am instead living daily with the feeling that I have been "glutened" (a term often used by those living with Celiac Disease to describe how they feel after the exposure).  


If I am honest with myself, the investigational study IS a lot more than I anticipated.

And, when the study coordinator asked me to check in with her daily and then gave me her cell number and asked me to call her with any changes in my condition -- even over the weekend -- I knew things weren't going quite as anticipated.

The cluster of symptoms I am experiencing, which remind me so much of how I feel after being exposed to gluten, make it impossible not to wonder, not to ask myself what is happening inside my body.  

A friend, who is also a medical doctor and the mother of a child with food allergies whom I met through Eating Peanut, commented after reading my detailed post about how I was feeling that if it were her (in my shoes), she would be drawing a line in the sand -- a degree of pain or discomfort or some other point at which she would...just stop.  I responded that I did not want to think that way, and I am not thinking that way, but, her comment did prompt me to check in with her about the bigger picture, to which she responded "If I were worried that you were in serious danger you didn't know about, I'd definitely feel obligated to tell you."

I was never really concerned about that, but that is a nice thing to hold on to.