Monday, March 30, 2009

Maybe I should change the name to "Tales from the Potty"

We started potty training this weekend. Full force. Just pulled the band aid off and put him in big boy underpants on Saturday - no more pull ups (at least not during the day). It went well. Many lessons learned... such as...

The reason you put little boys into briefs instead of boxer briefs or boxers is because things fall out of boxers/boxer briefs as we learned when Dylan, who was playing in his yelled "Mommy! Poopy!" We ran upstairs expecting to help him on the potty. Instead we found poopy.... all over the floor! Apparently, he had an accident and it fell right out.

We asked him what happened and he said... "Mommy, poopy fall out of my tushy!" He seemed almost surprised by it.

This is going to take a while isn't it?

Tuesday, March 24, 2009

Bang A Gong

Dylan has been fancying himself to be the next Ringo. He insists on bringing his drumsticks into the car where he proceeds to clap them together and then drum on the seat in front of him. He's not half bad either (for a 3 1/2 year old).

He's changing day cares to one near our home. We are very excited as it's a Jewish day care center so he'll be getting a Jewish education and there is a big focus on fun and physical energy at this school which is something he really needs. He'll also be going to a local school for speech therapy which is great.

I can't believe he's almost 4 years old. Where does the time go??

Thursday, March 12, 2009


I got an appointment with one of the country's leading mastocytosis physicians. Dr. Castell in Boston. It sucks but there aren't many doctors who seem to really know and treat this disease. I have been trying to wrap my head around it but the second I think I have a handle on it - something new appears on my computer screen.

I know, I know, I need to step away from the googling. I can't help it. I need to understand what is going on. I had a horrible reaction to anchovies the other night (at least I think it was the anchovies). Then I had a horrible reaction to the horrible reaction. My body was actually vibrating. I thought I was crazy but then I posted it on my listserv and I got a bunch of people saying "oh yeah, that happens to me too". Worse part, it's not the first time it's happened either.

I want to see this doctor so I can find out how I can stay healthy. People who have the advanced systemic mastocytosis are so very very sick. I have indolent systemic mastocytosis so my goal in seeing Dr. Castell is to ensure that I remain indolent. Hopefully her answer is better than my doctor's which was.... "some people stay indolent their whole lives with very few flairs while other people go from indolent to advanced. There is no rhyme or reason to it... it just happens".

Bullshit. I don't believe that. There has to be a way for me to stay healthy whether it's eating or avoiding certain foods, taking meds, exercising etc. Whatever it is - if it means I'll stay healthy... I'll do it.

Monday, March 09, 2009

The Kindness of Strangers

It never ceases to amaze me... the kindness of strangers.

Since receiving my diagnosis of systemic mastocytosis, I have, of course, sought out every source of information I could find. Unfortunately, there aren't many of them. I have found two groups on facebook with absolutely lovely people who have been more than willing to not only answer my questions... but answer them honestly. I have also signed up for two listservs and while I don't participate greatly with them, I read the compassion they have for each other and it warms my heart. Especially after having such negative feelings towards the "Big List" as the Guatemalan adoption listserv is/was known.

Today was my first day back to the gym. I feel the need to be kind to myself and this is one of the ways I like to show myself kindness. By giving my body the exercise it so desperately needs. I haven't worked out in a few months for fear of causing a reaction.

Now, being in the fitness business, I know the owner of my gym. However, I still think he would react the same to any member. I explained my situation and told him I'd be bringing my epi pen with me... just in case.

First, he was so very happy to see me back. A number of people mentioned they had missed me which felt so good! I gave him the bag w/my epi kit and told him I had an emergency card in the kit w/my allergies, condition, etc.

He took it upon himself to go online, pull up a video on how to administer an epi pen and had his staff watch the video. He was very discrete and let his staff know to keep an eye on me. I genuinely felt safe while I was working out. It was great and I did a half an hour on the eliptical which is pretty good considering I hadn't worked out in several months. I also pre-medicated which appears to have helped with the hives so a good experience across the board!

Friday, March 06, 2009

The Bad Wife

I feel like such a shit. It's Marc's Mom's birthday today. We were supposed to go over tomorrow night for a party. She's been sick all week with a fever and stomach stuff. Well, he just called me. Tomorrow night is cancelled and him and his brother thought it would be nice to bring over Chinese food (I really have to avoid MSG) and hang out.

He's picking me up, dropping me off at home and going back into town w/Dylan. I haven't been sleeping well... ok, I never sleep well but it's been bad lately and I don't know if it's the stress of this masto shit or if it's the masto. I just feel beat up today.

Marc undersatnds but I still fee like a shit.

Thursday, March 05, 2009

I can't think of a catchy title

Brain fog has taken over. I'm totally overwhelmed by this entire thing. I think I have a handle on it one second and then it's lost by conflicting information I find. I spoke with my doctor yesterday. She wants me to see a specialist in Boston and also wants me to registered at the NIH for trials (not happening).

I ordered my MedicAlert charm and a bracelet from Lauren's Hope. They have pretty chains for medical bracelets and if I have to wear one of those suckers - I want it to be pretty damn it! I like the MedicAlert system. I gave them all of my information (and I mean ALL of my information) and they have it in their database. Gd forbid something were to happen to me and I was alone, they would contact Marc. They have a list of my meds which is growing daily - so far we have H1 & H2 inhibitors, an antihistamine nasal spray, wellbutrin and the occassional klonopin thrown in for bad days. I also carry an epi pen and we may be adding a mast cell stabilizer to the mix too. They also have the name of my doctors and also my insurance info. Pretty cool.

I wish I understood this disease more. It's the not knowing that's driving me nuts!