Sunday Reader: Lupus Is Lame

In 2011, Caroline was a staffer for Johnny Isakson when she first got sick. She had just ended a 4 year relationship that she had expected to become marriage, not a return to single life. After a month of strange physical ailments and trips between Atlanta and DC things took a turn for the worst. We’ll let her tell what happened next in her own words:

I had my roommate/coworker take me to an Urgent Care on Wednesday, May 25th to see if they could figure out what was wrong. They did some tests, drew some blood, took a urine sample and told me they’d call me within 24 hours to give me my results. They also said that my kidneys were fine. That night I stayed with my Saint of a friend named Tabitha and just started feeling terrible. I woke up the next morning sobbing over Big and my body aches and how my neck hurt and my feet were so swollen. Tabitha says she wishes she’d just driven me to the ER right then. I insisted on going to work to wait for Urgent Care to call. I get to work around 8 and am FREEZING. My coworkers always jokingly gave me a hard time for having my space heater on under my desk, but this particular morning I had a quilt AND my space heater on AND a jacket and I was still shivering. No word from Urgent Care and it’s 9am.

I call my parents. I start sobbing again (totes inapropro in an office environment, I know ya’ll). My mom says to wait until 10 am and if Urgent Care hasn’t called that I should call them. I agree. 10am comes and goes so I call them and the lady who answers the phone says it will be another 24 hours for my labs results. I start crying again. Mom says go to the ER.

Saint KM in my office offers to drive me to GW Hospital. We get there around 11am. By 1pm we’re back in the ER and they’re running some tests. They figure out something is wrong with my kidneys. A nephrologist (that’s a kidney doctor for those of ya’ll not in the medical know) who I will come to know very well (Dr. Collins, he’s legit) comes to see me. He wants to run some more tests and says he’s probably going to admit me. He says that my kidneys are wonky but he’s not sure why. He says worse possible scenario I’ll have to get a kidney biopsy the next day but he doesn’t think that’s going to happen. I hear biopsy and start freaking out. Saint KM has been keeping my mom updated. She says she’ll stay with me til they put me in a room. She reminds me Dr. Collins said he didn’t think it would come to biopsy. They take me off to do an ultrasound on my kidneys. I get back.

Saint KM and I are calmly chatting. Dr. Collins comes back with a very tall, very handsome Indian doctor, Dr. Patel, who is the head of nephrology. He explains that my kidneys are spilling protein and they don’t know why, but he’s definitely going to do a kidney biopsy in the morning. I am flipping. More tears. KM lets my mom know. Mom hits the road to Atlanta to catch the first flight to DC she can get.< I finally get moved to a room around 9pm. They say my biopsy will be in the early afternoon on Friday, the 27th. I have awesome awesome awesome coworkers come visit me that evening. I have a moaner for a roommate. I am scared.

They wake me up 2 times that night to do vitals. I wake up at 730 am, Saint KM is there at 8:02 I think. (They allowed visitors from 8am-10pm). We sit. She helps me order breakfast. My friend Michael Venet from Moultrie comes by. He sits with me. My mom gets there around 11am. KM is still there. They decide to do my biopsy early. KM goes down to sit with my mom. Dr. Patel talks to me through out the whole biopsy. (He’s so nice, I really do love him just a little bit, I feel like he saved my life.) I head back to the room.

The next 2-3 days are pretty much the same. I can’t pee. Biopsy results slowly come back. They say it’s not cancer, lupus or diabetes. I breathe a sigh of relief. They release me on Sunday. They say to watch the swelling. Try and eat. I still don’t feel great, but my mom and I head home to where I’ve been staying in DC. Obviously that’s not the end of my story, the end of my hospital stay or the end of my battle. That’s only Day 4. I realized during the past few weeks that it’s absolutely possible to lose your soul. It only took me 18 days to lose mine.

There’s a lot more to that story, and I would encourage you to read the rest of it back on Caroline’s blog here. It’s the story of a young professional who had everything going right, then relatively normal personal issues transitioned quickly into a life changing, almost fatal medical ailment. Caroline had a lot of choices to make. Among them, she decided to live. And she’s been doing that to the fullest extent possible.

It’s been an eventful five years for Caroline since. She now works as a public policy analyst in Atlanta, which is closer to her folks back here in Georgia. She met and married Dan. Her Lupus requires an awful lot of daily meds but it is under control.

Since moving back to Atlanta she’s also been quite involved in the Georgia Lupus foundation. She and her husband Dan will be hosting a fundraiser next Sunday, April 24th from 5-10PM, at Eventide Brewing in Grant Park. Tickets are just $20 to attend.

Caroline understands the difficult transition it is to go from someone who is healthy to someone that is living with Lupus. She was lucky to have a very understanding employer and a good network of family and friends – and quite a bit of determination to get through it all. She’s now working to give some back to others who share in the struggle.

I’m planning to join them next Sunday night. Click this link if you would like to join as well. Or, if you’re unable to attend, you can still donate directly via this link right here.

If you would like to learn more about Lupus or connect with the Georgia Lupus foundation, you can also find them via this handy link.