Wednesday, October 16, 2013

A crying day

Today is a crying day. I think everybody who ever has to deal with something chronic has them periodically, yes? You don't even have to BE crying to have one.


Because it's a day of coping with a loss, whether that's being reminded of what you can no longer do, where you can no longer go, what you can no longer eat, or who you no longer see. And those days can hit hard, sometimes.

Today? Today I am mourning the loss of rice pasta. So, yeah, most people would not view this as a thing that requires mourning, but for me, today, it does.

I have not been able to have grains without getting sick from them for about 4 years now. I've still tried periodically, but I always end up in pain and sick either immediately, or within a few days of frequent trials. And that means carbs are tricky to find, and hunger is sometimes a bit more difficult to assuage. But a couple weeks ago, I was in high alt. I'd found a gluten free certified, organic rice pasta with just two ingredients: brown rice and water.

It doesn't get any better than that unless it was just rice!

So I trialed it, and I thought I did all right. My daughter thought she did all right (we're both trialing it). So I ate it again, and then again, and it was still okay, The next week I added in another grain: a newly discovered, non-GMO, gluten free certified, ancient-grain popcorn. And, well, it wasn't as good. More than about a cup started hurting my stomach.

But just a little? That seemed okay. I had TWO whole grains I could eat!  I was so freaking excited it was like it was Christmas. For those who have never gone through this, just imagine that you can only eat fresh fruits, veggies, and meat for about four years and imagine having a tortilla for the first time; that's my level of happy.

A few days after this, I got my MCAD diagnosis. And then life exploded. I felt horrible. I got the diagnosis and I felt so awful. The next few days I could barely get out of bed, stumbling around in a daze and headachy and dizzy, and it just seemed to get worse. I looked at the low-histamine diet information I'd found on the web and dropped all the bad foods, including my main source of carbs (potatoes), hoping that would help. Nope; nothing.

I thought it must be the stress; it was stressful trying to learn everything I needed to. But past that first day or so, I didn't FEEL stressed. A little more urgent than normal, but not to the point that you'd think I would keep feeling worse than the day before.

And then I had a revelation. This is the kind of revelation that I think it takes an allergy in one's life to understand. I realized that my diagnosis was not the only change in the last week or so; my diet had changed too. And the worse I felt, the more rice pasta and popcorn I  had eaten, because it was one of the easiest foods I had in the house.

So I dropped them both, and sure enough, I started to feel better. It was one of 'em, or possibly even both. I was betting the popcorn, but I didn't realize how much I was betting on the popcorn until I tried the rice last night and it set me off. Dizzy, nauseated, sick and headachy.

This has really gotten to me today, for some reason. I have already tried to add potatoes back in because I was getting so hungry without rice, and nope, they are setting me off a bit, too. So I'm sitting here today still recovering from my one stupid little piece of rice pasta, feeling hungry and miserable, and wishing desperately that I had something to eat, something with tons of carbs and calories, and there is just nothing that I know of yet that fits the bills. Sweet potatoes, potatoes, plantains - all gone. Grains - gone. Fruits - hardly any that I can eat that are safe. My farmer doesn't grow these, and any from the store keep me reacting at a low level almost perpetually.

It's so stupid. This is rice, for the love of pete. This is the food that they give you when they think you're allergic to the world, because it's supposed to be the 'safe' grain. It feels so unbelievably, ridiculously silly to react to rice, and yet, here I am, getting better because I'm not eating it.

Dang it.

I think I am going to make myself, I dunno, a melon smoothie today. Out of, you know, melons, and nothing else. But I have electricity, and I have an electric ice cream maker, and I am going to sorbet the heck out of some homemade melon mush, is what I'm going to do.

Take that, rice. I don't need you. You don't matter to me anymore. I am not going to think about you anymore. In fact, I'm going to be seeing other food because they treat me better and give me nicer things, like reaction-free calories.

So there.


  1. Oh I can SO relate to this. I'm currently only able to safely eat pork. Yup, that's it. I'm hoping to add other foods back in soon. My doctor is on vacation but when he gets back we will discuss my MCAS diagnosis and treatment plan. I hope he will put me on something better than my current allegra/zantac combo because i am reacting several times a day and tired of having to pop so much benedryl.

    Sometimes I look at the rice flour in the pantry and think, I never really reacted to rice THAT badly...I could make some rice cookies and it would be delicous breadness. Heck, I"d kill for a pear some days. LOL

    1. Oh no, Sean-Michael! I thought you had one more food - did you lose that too? *big freaking pear-filled hug*

      Yeah, you never realize how much you really LOVE certain foods until you can't have them anymore, huh? I had no idea I would miss grains so much, or heck, potatoes. And that popcorn is gone, now too. Turns out there were BOTH bad, the rice more than the popcorn, but still both off the menu now.

      And I SO know what you mean, that 'I didn't react THAT badly' mindset...which I just went through yesterday and gave in to after my daughter had about an hour of complete angst and I was starving and stressed out, both.

      And regret like mad today, of course, because that was such an idiot thing to do, and we always pay for it, yeah? >_<

      Do you have any vitamins or supplements you can take at all, hopefully?