Monday, June 29, 2009

And now for something completely different.....

My masto is relatively stable so let's talk about the more important things in life.... family :) Dylan is going to be four in just a week. FOUR - can you believe it? My baby is gone and has been replaced with the most energetic and spectacular child. He loves to explore and loves books. He romps with his friends at his new day care and sleeps like a champ. He'd rather play than eat which is a skill I really need to develop. Now that we've got this medical crap out of the way, I need to play more. I've been so locked up in my head that I haven't been playing with him as much and that's no fun for any of us. We had a party for him with family & very close friends yesterday at Smith Playhouse. This place is truly Philadelphia's best kept secret. My best friend, Joelle, was so impressed at how safe and secure it was. Only 10 and under allowed in the playground so no teenagers bullying around the little ones. The playhouse is 5 and under. He was so cute singing "Happy Birthday to Me". He had such a blast. His Pops (Marc's Dad) came in for the occasion which was nice. I think it's the first time our families were together where I didn't stress. In case you didn't know - our families have never gotten along which has been a source of much angst for Marc and I. We finally told them that it's their problem not ours. My Mom said hi to his mother (huge step) and even spent the evening hanging out with us, Marc's Dad, brother, sister-in-law and niece. Nice time was had by all and I think those walls are slowing starting to crumble. This is a good thing because I really don't want Dylan caught up in this type of nonsense. I can't wait to go home tonight. Marc is leaving early and is going to put together Dylan's new big wheel. It's the original kind (not one of the fancy shmancy ones) and he had tried it at a neighbor's house and loved it.

Friday, June 12, 2009

More on Masto

So while I was up in Beantown, Dr. Castells ordered some additional testing. Some blood work and a urinalysis. I'm happy to report the blood work came back normal. Urine... not so much. My Prostaglandins:D2 levels are, um, elevated. By elevated I mean 10x normal (Normal is between 100-280 and I'm 1241). I was totally freaking out.

My dear friend Fiona, a fellow sufferer and genius extraordinaire provided me with some information on PD2 and Masto. Turns out it has something to do w/lungs, can be associated with COPD and of course, my thoughts go back to Dad.

I know he had this. I am positive about it. I can't help but wonder... would his COPD been as bad had he been diagnosed? Would taking a different regimen of drugs made his quality of life any different?? Not that this changes anything but it does make me very sad. Sad that something could have made his breathing a little easier if only they had found this.

Next weekend I have a follow up appointment with my allergist. From what I gather from Dr. Castells, it was quite a find she made... this masto. She seemed surprised that she would order a tryptase level. I want to give her a big hug. Not that I'm happy to have this disease but more that it was caught very early on (comparatively speaking) and hopefully, with the proper medications, I can expect to have not only a normal life expectancy but a good quality of life as well.

Of course, quality of life is, in some cases, a choice. If I don't choose to get my fat ass in the gym and get my eating under control, I won't see a good quality of life. Marc and I have an appointment with a nutritionist (we had an initial appointment and are very excited at the prospect to be working with her) and next week - I'm back in the gym.

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.