Silly sun gear

Silly sun gear, originally uploaded by PaulaK.

Since the sun seems to exacerbate my rashes, here I am with my hat and sunglasses, fully sunscreened. At least this hat is light, has built in spf, a string to keep it from blowing away, and is comfortable. Last year I had a straw hat that was hot, tight, heavy and blew off my head easily.

Cutest little wetsuit wearer ever!

Cutest little wetsuit wearer ever!, originally uploaded by PaulaK.

Cutest Baby on the Beach

Cutest Baby on the Beach, originally uploaded by PaulaK.

M. loved the beach. I bought everyone a wetsuit since we knew the water would be cold and the air wouldn't be all that hot. They turned out to be useful since we had unseasonably cold weather.

Ready to parasail!

Ready to parasail!, originally uploaded by PaulaK.

We also visited Myrtle Beach during spring break, and I did something I've always wanted to, parasail! Here are D., L, me and J. waiting our turn.

At the Top

At the Top, originally uploaded by PaulaK.

Here we all are at the top of the Chimney Rock trail. Front row: T., I., K., and A.
Back row: Paula, D., L., J., Daryl and M. in the backpack.

At the Falls

At the Falls, originally uploaded by PaulaK.

We drove down to Asheville, NC for spring break. This is J., L. and D. at a waterfall near Chimney Rock.

Prom 2009

Prom 2009, originally uploaded by PaulaK.

We hosted a before prom photo shoot at our house, as well as an after the prom party. Aren't these kids beautiful? Not all of them attended the party. It was just 3 couples, and the other 2 girls (not D's date) had to be home earlier because they were sophomores. After they left, it was 3 guys and 1 girl!

Prom 2009

Prom 2009, originally uploaded by PaulaK.

D. went to the prom this year with his girlfriend, M. They both looked fabulous.

Another Health Update

Boy, it's been a long time since I've blogged! I've meant to, but somehow...

I have been feeling really well. I am still doing the IVIG treatments once every two weeks and they still seem to be working. I am still doing PT and am slowly regaining strength. I have been very active, and very happy. I am back down to 9mg prednisone daily, and start on 8mg tomorrow. I am nervous about this because that is the level at which the really bad rash appeared last time. I have had some minor spots of rash here and there as I have tapered, and some areas which just never went away, like on the backs of my hands and my elbows. To me, this means the disease is still active. If it were not, then nothing would happen as I tapered the prednisone. I am worried that if I discontinue the treatments entirely, the disease will come roaring back. Only time will tell. The plan is that I will reduce the frequency of the treatments to once a month in June.

Meanwhile, there is a lot of complicated medical stuff that I have been researching related to possible causes/cures/treatments that I want to discuss in detail with the rheumatologist at my next appointment.

Medical appointments and taking care of myself (PT, IVIG treatments, massage, acupuncture, rheumatologist, exercising regularly) still comprise a half time job. It is good to focus on myself, I guess, and I know that I am lucky that I can make the time and can afford the complementary medicine as well as the traditional.

Please keep me in your prayers as I continue to taper the prednisone.