Making progress

So I had another echocardiogram on May 16th and the pericardial effusion is gone, my pulmonary artery pressure is down to 79... things are looking better. I saw the internist here on the 24th and asked him a bunch of questions. He reviewed the echo results and said it's encouraging. According to him:

• my March pressure of 113 was one of the highest he's ever seen

• it would be great if someday the pressure would get down to maybe 60 or even 50 but it won't ever be normal again

• I should have another echo around the end of June

• I'll be on most of these drugs forever

• the night-time oxygen I'm on is helping to reduce the arterial pressure

• I don't need to be seen at the U of Colorado Pulmonary Hypertension Center... unless things get worse
• I don't need to worry about right heart failure at this point, since the arterial pressure coming down should reverse some of the RHF
• and I should probably stay at 40mg of prednisone a day like the pulmonologist wants, even though I'm inclined to just start tapering it on my own!

I feel okay. I'm just ugly with Cushing's syndrome - people stare, I try to hide my face with my hair or my hands. But most of the time I forget how different I look and just go out and do all the stuff I need to do. It helps if I remember to put mascara on and do something with my hair. My bones feel so crunchy! My spine and fingers and toes are super easy to crack. The worst thing I feel now is weakness in my legs when I try to walk up stairs. My thighs have wasted away and I need to get on some kind of exercise schedule to reverse that. Today I bought some Nair to get rid of the sideburns I've grown... LittleK helped point out some whiskers I'd missed while plucking the other day LOL

Baby R's blanket is coming along (blue cable knit)... I try to work on it every day and go to the knitting group that meets at the local yarn shop on Mondays. I keep flaking out and getting the night wrong though!! I bring my cane there so they're not worried I'll fall to my knees again like I did a month ago.

Mom's really great to have around, she does all the little things I'd rather not like dishes, bedtime routine, vacuuming, etc. She makes sure the kids spend time outdoors, she walks the dog, she sings with the girls and holds R all the time. We've ironed out the little differences we have and things are going really smoothly. Everyone's excited for the upcoming arrival of Grampy and the trip to Albuquerque!!

So LittleK's done with school, T has one more short week of first grade, and then we'll start 'homeschool'. I guess I should start some plans now so it doesn't turn into a big messy summer of disappointment and whining about "but youSAIDWECOULDDO HOMESCHOOL MAMAAAAAAAAA"

Time to go and turn on the boob tube for some mindless entertainment. And time to knit.