Saturday, October 26, 2013


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.

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.

Sunday, October 13, 2013

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:

Sing it, sister.

Saturday, October 12, 2013

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

Order t-shirts.


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:

Tuesday, October 8, 2013

Low Histamine Recipes

I need these, like, today. This minute. Because it turns out stress and anxiety can SET OFF this MCAD  thing, and I'm stress enough about trying to figure it all out that I'm feeling worse right now than I have in weeks. Sigh.

This site looks like a good place to start, at least! Tons and tons of low histamine recipes, which it looks like I've gotta start eating, at least at first.

At least I can still eat my falafel!

Seriously, this is my favorite meal

Sunday, October 6, 2013

What it's like to have a systemic mast cell disorder

This paper, right here:

"...Typically, mastocytosis patients [and related mast cell disorders] experience increasing limitations and greater suffering over their lifetime. If they push against their symptoms, believing that "trying harder" or pushing to complete tasks (laundry, grocery shopping, visiting a friend, cleaning), the symptoms become more severe and prolonged and continue to ricochet setting off other symptoms for days, weeks or months on end. There is no predictability to mastocytosis symptoms. There is no way to make the symptoms behave consistently or to be able to garner better control over them. The medical research community has not yet fully figured out mastocytosis. In the meantime, patients are driving the medical research via their physicians reporting the escalating symptoms and secondary and tertiary complications suffered by their patients. Everyone wants to have the answers, patients most of all.

Saturday, October 5, 2013

Proof that it's not all in my head: Mast Cell Activation Disorder

It finally, FINALLY happened.

Two days ago I was diagnosed with a condition that explains EVERYTHING. Why I react to crazily small amounts of things, all the time, and have to take so much care or the whole world falls apart.  I have a somewhat rare condition known as Mast Cell Activation Disorder.

I went into the doctor's office not expecting much of anything. I'd received a call that the tests were negative, and then I'd made an appointment to see this doctor anyway, to discuss the results (she'd suggested such a thing at my first appointment). I was thinking I'd be asking about what new things she might suggest I could look into, if any. If she might have some possible idea of where I could go from here.

Instead, she told me I did not have one of the conditions she tested for, but I DID have the other.