Tuesday, May 26, 2009

Travel, Parenting & Masto - not a pretty mix

We went out to Boston to celebrate our dear friends, Andy & Lori's, baby naming for their beautiful twins. The three of us flew to Boston (via Atlantic City - what a pleasure!) and things were going beautifully... on the surface. Just under the surface my anxiety was rearing it's ugly head. Pushing it down, I pushed forward determined to just suck it up and deal (instead of doing the intelligent thing like taking my meds).

At the synagogue, Dylan understandable was getting antsy so I took him out of the chapel to wander the halls. He hadn't gone to the bathroom in a while so we went into the rest room and I told him it was time to potty. He didn't want to go. I told him to just try. No! Dylan goes into meltdown mode. Full on screaming at the top of his lungs, kicking, hitting. I wanted to die. I took him out of the bathroom hoping it would help. Nope. Took him downstairs (chapel was on 2nd floor). Nope. Outside, more melting. Meanwhile, 45 minutes has elapsed and it doesn't occur to my darling husband that Dylan and I have been gone a while and that maybe, just maybe, he should check on us.

By the time I am able to get Marc's attention my anxiety is in full blown attack mode. I manage to get his attention, he walks out, I shove Dylan at him and lose my shit entirely as I walk away. Cried for over an hour, burning my eyes... yet again, setting of a bad masto event with major flushing and hives. Finally get back to the hotel, get meds in me and calm down. Now... since, my stomach has been in shreds. The only good thing about having this diagnosis is that when something happens in my body, it makes more sense now than it did in the past. Someone recently asked me if I found that my symptoms have been worse since my diagnosis and I said no - just now I know what they are instead of some weird pain, nausea, etc.

I'm so tired. I can't wait to see Dr. Castells on Friday. I don't know what I expect. Maybe she'll be able to waive some magic wand and have all this stuff make sense.

One thing is clear... I need to get on a regimen of anti-anxiety meds sooner than later (yes Ms. L, I will be calling your pyscho-pharmacologist shortly). I need to do something as I really can't live like this. It's not fair to me, it's definitely not fair to Dylan or Marc.


  1. It seems that anxiety is a major component of this disease, and the more you recognize it (either in the throws of it, or afterwards) the better off you, Dylan and Marc will be in the long run. In the meantime, we can't undo what has happened already, so try to cut yourself a bit of slack, k? And, have a good cry...it's ok.

    You're only human, and this disease (and its manifestations) ain't a whole lot of fun.

    I tried the anti-anxiety meds for a while, and while there are moments I could use them, overall, I'm fairing pretty good without them now. So, there's light at the end of the 'crazy' tunnel. We aren't crazy or neurotic...all part of the Masto fun.

    You see Dr. Castell's on Friday. You're in great hands, apparently. She totally gets the whole emotional component of this. She's not God or magical, but seems to offer some solid, down to earth ways of dealing with the manifestations of this disease.

    It's gonna be ok.
    loads of love,

  2. I was diagnosed with masto in 2006 and am just now going to see Dr. Castells... next Thursday actually! I am so excited to be seeing an expert on the disease. I hope we both get the answers were are looking for.

    Wishing you good health and piece of mind,