My daughter

I just realized that I never wrote about my daughter and her diagnosis.

It's been a bit of a trip, with my misunderstanding what the diagnosis actually WAS when we talked over the phone and only last week getting the right information.

Testing

We dropped off my daughter's blood test today and we're doing a 24 hour urine test - the same one that diagnosed me with MCAD.

I'm so torn. I want to have answers, finally, to what is hurting my baby girl. But I don't want it to be THIS answer. I want a different one. I want an answer that has a super pill that will cure her pain, or a magic medical wand that can be waved and make it all better.

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.

(source)

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.

Research Frenzy ending

It's taken a little over a week, but I feel like I can catch my breath now. It's a shaky breath, but not a defeated one, I don't think. I have gone through my research frenzy for this MCAD thing, and I finally feel like I have enough of a handle to not feel completely swamped.

I know there is lots more to learn, but I feel like I have a little of the basics.

1. Drugs are not going to solve this.

Yes, this

How it feels to be diagnosed with MCAD after a celiac diagnosis:
http://wheniwentglutenfree.tumblr.com/post/57611329798/when-i-tack-on-another-food-intolerance-allergy

Sing it, sister.

What to do now that you're diagnosed with a Mast Cell Disorder

Order t-shirts.

Seriously.

Because if it's been, oh, about 7 days since you were diagnosed, and you're a bit of a research geek, you've learned some awful things, some scary things, some 'no, this part of it will not be getting better' things, and some things about your mast cell disorder that are TRULY bizarre. So right now, honey, you've got three choices: laugh, scream, or cry.

I know I'm going to cry later, when some of this really hits me, but right now? I'd rather laugh. So, here's some funny things to think about with this condition: