The Zero Club

I had my first follow up visit today since being released from the hospital.  My neph was pretty excited to show me a slip of paper with a giant N for negative written next to protein.  "You're fixed, see ya next month," he said with a smile.  That's right, I'm in full remission and hanging on to all the protein I've been scarfing down for the last couple weeks.  We celebrated with a meat-filled dinner...beef tacos with a side of beef-filled chili rellenos and beef quesadillas.  Actually, now that I think about it, all that beef (and cheese) probably won't bode well for the cholesterol test I have to take first thing in the morning.  So much for getting rid of the Lipitor pill :)  He also told me I'm tapering completely off the prednisone over the next 4 weeks which is nearly as exciting as not losing protein...well almost.  Even the thought of putting that small 5 mg pill in my box instead of 1/2 of a 20 mg pill had me so excited I had to refill the whole week's worth. 

Now onward to the day I can throw that box away...

Home, sweet home

I've been home from the hospital since April 13th. It has been awesome to be home and away from the steady stream of nurses and doctors in the hospital. I am also finally at home in my body again! I can squat! It is amazing how much I took the ability to squat for granted. You have to squat to do almost everything related to a 4 year old, get things from the bottom shelf at the grocery store (that is where everything I need can always be found), tie shoes (assuming I can tie them that day), and honestly the list goes on and on. I LOVE being able to sit on the floor again. Crazy I know.

So far the swelling has remained minimal to non-existent, and I'm gaining back the body mass that I lost while swollen. My energy has rebounded, but I still get tired pretty quickly. Nothing a quick three hour nap (whaaaaat?!?!) doesn't take care of :)

Morgan has been really excited now that her mom's legs aren't so puffy anymore. Now I can run almost as quickly as she can as she has pointed out numerous times. We've had a few girl's only days over the last couple weeks which also gives Michael a break. She is a great little shopping buddy!

I'm slowly easing back into work. I have a tendency to want to go full speed ahead, but they're great about reminding me to take it easy. The biggest problem is that I haven't figured out I overdid it until I'm beyond overdoing it!

For the next 5-1/2 months I'll be taking acthar injections twice a week on top of my daily cocktails of other meds. I'm tapered to 10 mg of prednisone now and will hopefully be off it completely soon. I'm at full dose of cellcept and prograff and now that the disease is in remission, my cholesterol and BP are back at healthy levels and not requiring meds! Michael has been so kind as to volunteer to stab me with a needle two times a week. Last Friday he was tentatively trying to stick me in the gut. It hurts less here as I have the most "padding" ;) I requested we do a count to 3, so I'd know when to expect the jab. He agreed and started with, "one (he inserted needle here), two, three, here we go!" I was laughing so hard by the time he got to two as I had obviously felt something sharp in my stomach that the puncture wound bled for 10 minutes. So much for that plan. He said he thought the stealth approach might make it easier on me. Ok at least we laughed about it :)