A wonderful young lady with Systemic Juvenile Rheumatiod Arthritis and Macrophage Activation Syndrome. I seem to defy the laws of modern medical science. We are home, and the wacky regimen of meds is working........for now. I know that God intended this life, and has a plan for me, be it dying tomorrow or living to be 100. I like to think that even though my life is tough, everything I've been through (and will go through) will help someone to not have to go through their life quite as hard.
Sunday, June 24, 2007
Two whole blissful days of freedom!! We've been settling in over the weekend, it's been kind of slow. Trying to get the room livable for two people again. Mom spent most of her time out of the room, so space was not an issue until now. It was of course a fiasco trying to get discharged, but we finally made it. We were written down for three o'clock, but that turned into more like ten o'clock. There were these people who needed to use my room to test some equipment to assist quadriplegics (voice activation systems and stuff). They were allowed in my room from 12-1 since that was when I was out of the room (we had a meeting with someone at 2:30, so they were supposed to be gone by two). They didn't even get there until like 1:30, and by the time the meeting was supposed to start, they were still there!! Mom couldn't pack anything and the lady couldn't get to my respiratory equipment b/c those dough heads were in the way! I couldn't even fit in my own room, I had to sit out at the nurses station. Finally we had to kick them out, just so we could get in the room and learn how to work the home oxygen supplies. Not to mention we still had to pack up months worth of stuff. Speaking of, Mom deserves a huge round of applause; she hauled two wagons full of crap back and forth b/w the hospital and the Ron Don by herself, walking, 4 times! It wasn't until the fifth load that the nurse noticed mom doing it herself, and was kind enough to inform us that security was supposed to help us with that kind of thing. That made the last trip much easier, since we were able to fit both wagons and us into the van in one trip. Silly us not to think of it before though. But hey, we were later than expected, but we made it, and haven't been back since. Mornings are gonna be a little tough, though. None of us are morning people, and I have scheduled meds at 7 am (especially Sundays, cuz I have two meds, and one you have to take on an empty stomach and stay upright for at least 1/2 hour afterwards at a forty five or greater degree angle. Yuck, I know. But this med is worth it, since it's to help my bones build back up and recover. Listen, I have to go eat and take my morning cocktail, but should be back on later or tomorrow! loves to alls, kayla (and mom, of course!)
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