Wednesday, June 03, 2009

Andy, Lori & The Twins, GDT'rs and Dr. Castells - what a weekend!

Holy smokes what a weekend! It started off with us flying out of AC Airport. Unfortunately, our flight was delayed 3 hours and my big fear was not getting up to Boston in time for my appointment. Thankfully, we did take off and had a quick, uneventful flight.

Upon arriving in Boston, our darling friend, Andy, picked us up and took us to his house. We chowed down on pizza and beer and just relaxed while they "dream fed" their twin daughters. I always knew Andy & Lori would be amazing parents. Seeing them in action just showed me how amazing they are. Their girls have bad reflux and have developed bottle aversion. When Dylan was their age, he'd down 6oz of formula in about 10 minutes. These sweet angels take about 1/2 hr just go get down 4oz. I just hope that their reflux fads into their memory and are able to eat without pain soon.

Next morning we were up early and headed into Boston. Andy dropped us off on Newbury Street where we had breakfast and just relaxed. Around 11 we headed over to meet my friends from the GDT at The Savant Project which was a 2 mile walk in the rain. We stopped at Northeastern University's student center for a break and an extra umbrella.

We had an amazing lunch with some amazing ladies (Marc was quite happy to be surrounded by a bunch of beautiful women). The hour or so flew past and then Marc and I were on our way - walking to Dr. Castells' office compliments of Google Earth.

What we hadn't realized is that we put in the wrong city so what we thought was only a 2 mile walk from the restaurant was really a 7 mile walk from the restaurant. When we realized our (ok my) blunder, we hopped in a taxi. I thought the taxi driver was trying to pull a fast one - going behind these buildings and such. Much to my delight - he knew exactly where we were going. Unfortunately, I left my cell in his taxi. Marc had the receipt so we called the cab company and the driver brought the phone back. He tried to give him a $20 but the guy took $10 (for gas) and said that was enough. Nice guy!

We then had our appointment with Dr. Castells. I felt like I was meeting with the Dali Lama. She was a bit uncomfortable with the idea of me taping the conversation but fortunately relented (because I forgot half of what she told me). She said I have a normal life expectancy with this disease. I may have an increase in some symptoms but nothing life threatening. No reason to think I'll just start shocking but should carry epi just in case. Avoid triggers as much as possible. Take care of myself as much as possible. I do have urticaria pigmentosa pretty much all over my body (not just on my legs like the hematologist said). She's added gastocrom and ketotifen to my regimen. The gastocrom is covered by insurance (yay). The ketotifen is not available in the US so I had to order it from the UK. It's supposed to be the best antihistamine in the world.

Back home on Saturday morning after a few more snuggles with the Boston Babes (and the twins too -hahahaha). Dylan was at Bubbe's and had a blast. Sunday we just relaxed and now are trying to get back into the swing of life again.


  1. Ketotifen has made a difference in my situation. Glad she's offered some peace of mind and care. I hear she's excellent. Might have to get to Boston....

    Glad you had a good time AROUND the visit.


  2. That's good that she doesn't think that you will just start shocking out of the blue. That has to be very reassuring. Glad the appointment went well.