Taking some control- 5/1/2011

Hi All,

Well, I told myself I would update you guys as soon as I heard back about the PET scan, but I'm finding I need a few days to process information enough to write about it. Information: processed.

I talked to my NP last week and she said my doc reviewed the results and they were inconclusive. Basically, she said the results weren't clean, but they didn't exactly show sarcoidosis. She is going to talk to her colleague on the east coast that works with strange presentations of sarcoidosis to get his opinion. I'm bi-coastal baby!

I was really shaken up about the whole sarcoidosis thing, and just feeling like my heart stuff is on the decline. Since my heart is pretty shot, why can't I just get on the transplant list? Well, after crying and whining (I know, I'm a real treat), my NP finally said that I'm just not sick enough. I think I knew that in the back of my mind, but I go through this stage every few months - I have some setback, I get scared and frustrated and then beg for a transplant. I'm sure you guys are familiar with the cycle by now, but I somehow always think this time will be different.

So anyway, my NP reminded me of all the reasons it is crucial to keep your own heart as long as possible. We made a med plan and I'll see her again in 2 weeks. Hopefully by that time, my doc will have some answers about the PET scan.

With all this heart stuff, I've been feeling very out of control lately. That comes with the territory, but it was getting to be too much. So I've been trying to take some control where I can. I've been giving myself a mini-makeover (If you watch RHONY, like Ramona!).

I got my curly hair straightened, have gotten some new clothes, I'm wearing more make-up, I've been eating really clean, and getting good sleep. Hopefully I'll be allowed to go back to cardiac rehab in the next week or two, and that will be the icing on the cake. And I'm going to Vegas! I'm meeting my friend Jenny from New Mexico and her friends to bask by the pool, drink pina coladas, and play blackjack. Hit me!

Alright kids, it's a warm-ish sunny day in Seattle so I've got to go soak up every bit I can.

Much love,