Wednesday, August 12, 2015

Trying to Avoid the Funk

The funk is not a sexually transmitted disease.  The funk is something I felt last year about this time.  The funk usually creeps up on me right after I get the call that Wren’s Celiac remission tests are in.

Last year, her TTG IGG level was still elevated, but no one was concerned.  Those can take a while to go down in a kid as sick as Wren was.  We thought it would be better this year.

This year her TTG IGG level was higher.  So much for that.

The good news:  None of her other Celiac tests were elevated, which is a vast improvement. 

The bad news:  I’m still thoroughly pissed about the one that won’t go down, and I want to break things.  This elevated score puts Wren at risk for about 150 other problems and implies she is still somehow consuming gluten.

Honestly, I get that the fair is just that carnival looking thing with fried Coke that comes once a year, but I am having a very hard time with the lack of fairness I see surrounding this situation.  It’s been four years.  My kid doesn’t eat gluten.  The cross-contamination avoidance prep we go through when eating outside of our own home is insanely thorough.  What the hell, gluten?  Are you sneaking in the windows at night and just floating around the air waiting for us to breathe you?

Right now the assumption is that Wren’s body is doing this thing called cross-reactivity.  She will eat something that has a similar molecular structure to gluten, and so her body thinks it is gluten and starts fighting a war against everything it can reach.  Now we have to stop eating ghee, the only thing even a little like dairy in our lives.    

We also have to do the following:

Stop eating out at all.   The two places we used to could go are now off the list, possibly forever. 

Start preparing all food in our gluten-free environment.  We do this anyway, but when we go to Athens I have this beautiful 3-4 day period where my Nanny cooks.  She de-glutens her kitchen, buys everything certified, and I eat pork chops for breakfast and feel like a kid.  No more.  Dear Celiac disease, I’m going to murder you over this one.

Comb through every inch of food in our house again, just in case.  Call every manufacturer again, just in case.  Hand over a few days worth of time to do all the things we’ve already done all over again, just in case.  Because I have four kids under the age of 7, so you know, all I got is free time.

The biggest one:  go back to non-normal thinking.  See, D is a “normal” Celiac.  He still eats at restaurants with GF menus and partakes in the occasional consumption of dairy.  His Celiac remission scores were fine a year after he was diagnosed. 

Wren is not, and apparently will never be, a “normal” Celiac, and that is the unfair part I can’t quite deal with right now.  That is the part that is making falling into the funk so very tempting.  This year alone she’s been tested for cancer (her thyroid scores are better, but now she has to give up iodine for three months, even iodized salt) and started dealing with blue days about six weeks ago.  Blue days were when she would just be sad, unexplainably so, and couldn’t even verbalize it.  D and I knew depression was a big problem for people with Celiac, and though she was not depressed, she was showing signs of things being not quite right.  I knew when she came home from VBS, which she loved, crying every single day over the one thing that went wrong that she couldn’t shake that we weren’t in normal territory anymore. 

We contacted her naturopath, started more supplements.  The blue days stopped.  We found out today she is low in selenium, which explains her emotional issues as well as her thyroid problems.  Fixable, that’s how I’m trying to look at this. 

But one thing that probably can’t be fixed:  Wren’s body is super sensitive in a way most people with Celiac aren’t.  It doesn’t look like that’s changing.  After four years of extreme effort, four years of somewhat healing, we are still here.  She won’t be the kid who goes out to eat with her friends and just orders off the GF menu; she’ll be the kid who brings her own food.  She won’t be the kid who skips her vitamins and doesn’t realize it; she’ll be the kid who suffers nutritional deficiencies if she does (somehow we are STILL low in vitamin D, and we never skip that.)

She’s worked hard, and there is still no celebrating remission.  D and I have worked hard, and we still feel like we’ve failed.  I feel like the funk is circling the sky, waiting to land on me, but I don’t want to give in.  Once I’m in the funk, I can’t see anything else.  All the silver linings, the major accomplishments, they disappear.

So here’s what we’re holding onto:

We can see physical improvement.  That counts for something.

An adjustment in supplemental support seems to help with blue days, stomach aches, cramping.  Knowing where to look gets us to where we need to go to fix the issues.

The Lord says not to stress, so I’m going to look at avoiding the funk as a way of being obedient to Jesus.
31 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. 33 But seek first the kingdom of God and his righteousness, and all these things will be added to you.
Matthew 6:31-33

It’ll be okay.  There is so much good.  I will not quit writing, exercising, being around adults, all the things that help keep me sane and all the things I quit doing when the funk lands.  Soldier forward.  More tests in 3-6 months.  Wait.

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