mud and seeds

We just got back from a 4-mile walk on the bike trail along KGB Road. Little Dude was King Dude since he got to ride in the stroller almost the whole way while the girls rode their bikes and we grown-ups hoofed it. Boss only crashed twice and I only needed the inhaler once.

Spring right now means that the snow and ice have melted into giant road-ponds and mud-ruts along the sides of the road, there is trash everywhere you look, and the kids change out of muddy clothes at least twice a day. It also means the dog's back outside, and the grill's not just a dormant piece of backyard clutter anymore. We've started some seedlings for this year's garden: tomatoes, spinach, romaine, beans, sugar snap peas, cilantro, green onions, and cherry tomatoes, so far. I think this year we'll try growing potatoes... and hopefully I can get my hands on some rhubarb to transplant.

In the works are: the ballet recital at the end of May at the PAC in Anchorage, a trip to Nome for Taylor Booth's graduation, Girl Scout Encampment at the fairgrounds in Palmer, Girl Scout 6-day camp at Togowoods near Big Lake, and ever more soccer. I'm also hoping to make it to my 20-year class reunion in Nome during the Midnight Sun madness. Obla-di, obla-da.

3 Years, Life in the BDP

Tonight I was clicking through the PH emails I get, reading other people's stories about their treatments, meds and so on, and I realized that it was three years ago this week that I was tumbling down into the Big Disease Pit. I'd been diagnosed a few weeks earlier with another lupus flare and pulmonary hypertension, I was on prednisone, K was working in California... and I started coughing up blood. I had to haul the kids to the ER with me, send them away with friends, then I was admitted for pneumonia. Rough. I think the best memory I have of those days is when all my girlfriends came to visit and make me laugh... thanks again my friends, it still means a lot that you were there.

My doc has taken me off of Revatio, my only "real" PH medication. She said it tends to lose effectiveness in patients after about a year or so. It's made me a little nervous, because Revatio has been my security blanket and I worry that my pressure will go back up. I mean, it's nice having fewer pills to take but I don't want to take any chances... She believes Cellcept will handle the disease process all by itself but I won't be convinced until I have another echo. I'd actually rather have a right heart cath, since most PH patients have one yearly, and it's been over two years since my first one. My docs are consulting with the PH specialist in Seattle who oversees the ANMC cases of PH, but I wish wish wish I could just fly down there and talk to him in person.

Yes, worrying about anything will make any kind of pressure anywhere go up. For now I'll just not think about it so much, and celebrate another year above ground!