Day 12: The Escape

Well, it’s so close I can taste it…and it almost got taken away! My creatinine levels actually went up a little bit today from 5 to 5.3, and the doctors sort of wanted me to stay another day, but I think they knew I’d be crushed. So I get to go home, but now I will be my own nurse – I have to rest, rest, rest, measure my blood pressure twice a day, keep track of how much I’m drinking vs. peeing, drink at least 4 liters a day, give myself a shot every couple days, and take about 22 pills a day. I also need to walk a lot (I’m not supposed to do aerobics yet though), stay out of the sun, completely change my diet (dairy no more than once a day, red meat no more than once a week, no shrimp, and as little salt as possible). And I’ll be wearing a mask at all times in public. (Promise you won’t laugh when you see me!)

I woke up at 4:30 this morning and after the dreaded needle to the arm, I started thinking about being able to walk over to David and Kristina’s (my brother-in-law and sister-in-law, who live in the same apartment complex as us), and love on my nephew Beckett, and my now 6-day old niece, Hatley. Of course, I started crying as I remembered how I had forced myself, despite incredible arthritic pain in my feet and legs, to walk over there because I was lonely and missed them all so much. It doesn’t seem real that I am going to be walking over there today, relatively pain-free, although a little wobbly to be sure. The tears? I’m not blaming the steroids this time. It. was. pure. joy.

So taking 22 pills a day doesn’t come without a price. The side effects I’ve been having so far are sleeplessness, tingly/numb legs, swollen legs/ankles, pressure/light pain in my head and of course, I’m getting fat. But, on the plus side, the hair on my legs seems to have stopped growing, or at least slowed down exponentially. However, I would take all of these over what I had before. There are 11 main symptoms used to signify lupus, and to be diagnosed, you have to have more than 4 of them at the same time. I had at least 7, including malar rash (butterfly rash over cheeks and nose), discoid rash on my entire body, mouth and nose ulcers, nose bleeds, arthritis, pleuritis (inflammation of the pleural lining around the lungs), renal failure, and anemia. I didn’t, however, have any seizures, which I’m thankful for, but I probably wasn’t too far from it. I should get the results at the end of the week for the Antinuclear antibody (ANA) test that was sent to Costa Rica to test for lupus. I’ve heard that it can be negative, though, even if someone does in fact have lupus. My doctor said that he doesn’t care if it does come back negative; he has no doubt that I have lupus. And honestly, if I don’t, nothing makes sense anymore.

One thing I’ve realized about myself over the years, and more so while I’ve been in the hospital is that I tend to accept things easily. Sometimes too easily. I’m a little like Nathaniel in John 1. He asked Jesus “How do you know me?” and Jesus said “Before Philip called you, when you were under the fig tree, I saw you.” Nathanael, with his child-like faith, confesses “Rabbi, you are the Son of God! You are the ‘King of Israel’!” Jesus responded by saying “Because I said to you ‘I saw you under the fig tree,’ do you believe? You will see greater things than these. Truly, truly, I say to you, you will see heaven opened, and the angels of God ascending and descending on the Son of Man.” Jesus calls me His. I believe Him. I don’t have to ask a lot of questions. This was actually beneficial when it came to the lupus diagnosis – I was never in denial; I just accepted it. I do, however, think that it will be different now. I have a lot of questions and things I need to sort out with the Lord. Truths and promises that I used to believe so easily are going to take a lot more faith. But I trust that I will see greater things. That the Lord will reveal Himself to me in ways He might not have in a lupus-free life. And I will be depending on Him in ways I never needed to before. I know that you all have been praying for me more than I could ever deserve and I have been so humbled by the supportive community that you all have been for me. But I’d like to ask you to pray for one more thing: my heart. As I wrestle with the Lord over the coming weeks, months, and years, I will continue to need your love, support and prayer. Thank you for your faithfulness to me.

Oh, on a lighter note, I finally got to watch Price is Right today. It was just as great as I remember it as a little girl. Although, I did kind of miss Bob Barker. (I’m a nerd, I admit it.) Well, the wheelchair is here to whisk me away to FREEDOM! And… here come the tears… (it’s the joy again, not the steroids!)