Life with Lupus: A Love Story of a Girl and Her Lupus

“I’m sorry, Miss Rogers, you have Hepatitis.” Dr. X said.
“I’m sorry, you need to check again” was my response. Two weeks later…
“I’m sorry, Miss Rogers, you have Lymes Disease.”
“I’m not a doctor, but I don’t think so.”

Two weeks later…

“I’m sorry, Miss Rogers, but you have Lupus.” said a random doctor.
“Okay, what’s that?” was my reaction.

August 2003 I was diagnosed with Lupus. I had no idea what Mr. Lupus had in store for me. Our love story started in the spring of 2003 with a bout of strep throat. I told myself it was just a passing cold and I would be fine, no doctors needed. Little did I know that my body had other plans for me. I started to wake up with extremely random migratory joint pains. It was always different, one day it would be my left elbow and right knee and the next day my left ankle and right wrist…always a surprise.

People thought I was nuts. Some days the pain was unbearable, but I continued to tell myself “It’s nothing. You’re fine.” One day I woke up and realized I wouldn’t have to buy a Halloween costume that year because I had a beautiful rash across my face. I chalked it up to allergies. No biggie. Slowly, at least I thought it was slowly, I was gaining weight. Water weight. I started to worry. I made an appointment with Dr. X and both diagnoses that he provided were duds. I was visiting family and kept reassuring everyone I was fine, there was nothing to worry about, boy, was I wrong. I was taken to the emergency room immediately and admitted. A week later I had discovered that I had Lupus and had to start a six month chemotherapy regimen and meds. Not the love story I had in mind…

Roses are Red
Violets are Blue
Lupus is here
And in control of you

I’ve been in some interesting relationships in my 31 years, but this one is by far the most unique and bizarre. I lived in New York when our relationship started, but I continued seeing doctors in Pennsylvania because that’s where I was diagnosed and it was more comfortable for me to see doctors that I was familiar with. So, once a month I would drive to Pennsylvania for my chemo treatment and then when I was done, 8 hours later, I would drive back to New York. Exhausting. I continued this for the duration of my treatments and until Mr. Lupus was in remission. I had to tell Mr. Lupus that it just wasn’t working out between us, we needed a break. “It’s not you, it’s me” is what I told him. The next couple of years I went about my business without hearing from Mr. L, no phone calls or creepy letters.

Apparently, Mr. L was planning a sneak attack to get me back. I ended up in the ER again in 2005. This time his thinking was if he couldn’t have me, no one could. I started experiencing excruciatingly painful headaches, probably pretty comparable to a migraine, the joint pain again, the rash was back and the fluid was piling on again. I was in hospital #1 for about a week and a half until they decided there was nothing more they could do for me. I was then shipped off to hospital #2.

A few things I learned in hospital #2 were my headaches were caused by my excessively high blood pressure, I’m talking 200s/130ish, my weight gain, about 60-80 lbs. of fluid, was caused by my kidneys shutting down and Mr. L was back and in full swing. It hurt to walk, breathe, eat…everything. Living just hurt. I was literally knocking on Death’s door. Depression was also interested in starting a relationship with me. Dialysis started immediately as did the chemotherapy again. Miserable and unhappy, I kept moving forward. It can only get better, right?

Dialysis continued for about six months, until I met a “dry weight” that was my goal. I definitely wasn’t the size I was before the fluid decided to reside in my body, but I wasn’t the Stay Puft Marshmallow Man anymore either. Baby steps. I kept to my low sodium diet, took my meds, saw my doctors and obeyed them. Things were getting back to normal again, at least normal in my wacky world. This was the end of Mr. L and I. I had had enough of his games.

Slowly my headaches came back. My blood pressure was out of control. I lost my vision twice due to my blood pressure. Slowly, and unbeknownst to me, my blood pressure was killing my kidneys. September 2011 I found myself in the hospital again. My relationship with Mr. L was over, but he left behind a broken woman. Very broken. I consider myself a very tough person, but when a doctor tells you that a kidney transplant is your only option of survival, you can’t help but break down in tears and hate the world. So it started, my adventure in getting a new kidney. Dialysis started again, but this time around it was horrible. Every day was a new adventure at the dialysis center. I could leave feeling fine or sick to my stomach or nearly passing out. And regardless of how I felt I would still go to work two hours later and kept a smile. In December my “transplant buddy” and best friend, Jessie, and I went to the transplant orientation. Although I joke my way through everything, I felt hopeless. The list for a kidney is so long, I could be doing dialysis for years…I couldn’t even stand that thought. During the orientation I had learned that a person with an A+ blood type could receive an organ from someone that is A+ and A-. I didn’t think much of that information at the time, but it would come in handy in the future.

So, I finally got approved to be put on the transplant list, although at the bottom. Have to start somewhere. One day, at my brother Corey’s house, I was just making conversation and mentioned which blood types could donate an organ to me. Out of nowhere Corey says he’s able to donate to me then. I’m A+ and he’s A-. And like it wasn’t a big deal he said he would get tested. This was amazing to me. I was so excited, but didn’t show it. What if he was a match? So, his testing adventures started.

Finally, a miracle happened. Corey was a fantastic match!! Nobody knows
it, but I cried for days when I found out. This was so exciting, yet incredibly frightening at the same time. The date of the transplant was rescheduled twice due to a cold and some blood issues that I had. Eventually my body decided that May 3 was a good date and would pencil my transplant in. I was so nervous, I couldn’t sleep for days before the surgery.

May 3 was here and I was freaking out. I was getting a new organ put inside my body! What?! Jessie picked Corey and I up at 6 in the morning and by 7 we were getting ready for surgery. Nurses and doctors came by and kept giving me tons of information or asking questions, but it was all a blur. I wanted to be with Corey up until the minute we were taken into our operating rooms. I had a great circle of support from family and friends with me in my pre-op room. Thank you for keeping me sane in there. This was it, the moment had come, they were rolling me into my operating room. Yikes!

I remember waking up around 7 hours later to an ultrasound tech jabbing me in my new kidney in a not-so-delicate way. The transplant was a success! I don’t remember much from the first couple of days after my surgery except for the pain. My new addition was placed on the right side of my abdomen, right next to my belly button. My incision was about 12” long and had 39 staples in it. Over the next few days in the hospital I had to get up and walk around and get used to having a new kidney. So much information to remember. After 9 days I was finally set free. I started my adventure with a new kidney…

I’m 9 months into having this new kidney and I am doing fantastic. I’m on a strict medicine regimen and I have clinic appointments constantly. Small price to pay to be alive. I am immuno-suppressed so I am extremely susceptible to every kind of germ, virus and bacteria out there BUT Mr. L should remain out of my life as long as I’m on these medications.

I am finally able to get back to enjoying a life that I have longed for over the last 10 years. Lupus is just a part of my life, it’s not my entire life. I’m the only person who can control my happiness and positive outlook on life. I refuse to let little things like Lupus and transplants get me down. I have been so blessed by having both in my life…the blessings definitely outweigh the obstacles, tears and struggles. In no way am I thankful that Mr. L and I had started dating, but without him in my life I would have missed out on meeting new people with huge hearts and giving souls. I would love to give shoutouts to every person that has touched my life in an incredible way, but you know who you are and you know you are loved. Corey, I love you and will forever be thankful for the new life you have given me.

Dear Mr. L,

Roses are Red
Violets are Blue
I won this battle
So, good-bye to you

Love, Amie