My Complicated Case

In 2011 I was in Kansas and hurt my back getting in a boat. I was sunburned so badly. By August that year, I got hurt again and kicked in the back from being thrown off my horse. So I went to a chiropractor to get adjusted, and after that, I started feeling like I had the flu.

Inflammation

By December of that year I had gained so much weight I had to buy new clothes for work. I was a teacher’s assistant in special Ed in an elementary. My legs were heavy and sweaty and my feet were huge. I wasn’t eligible for insurance until February so I just waited.

On February 1, 2012 I walked into the local emergency room and they looked at me and said let’s go. The doctor came in and touched my ankle and said you’re not leaving, something is wrong. I didn’t leave the hospital for 3 weeks.

Getting an answer

At first, they tested me for all kinds of things and knew something with the kidneys. I got a lovely dose of medication to clean out my system, lol. And then they did a kidney biopsy. They told my husband to go home and get my girls, and come say goodbye. As he was driving home I called him and said turn around, they are transferring me to another hospital. I have lupus nephritis. My kidneys are shutting down and they need to put me on dialysis right away. So we had an answer finally.

Treatment begins

The next three weeks I had dialysis every day and I was started on so many medications and chemotherapy.

I had a port in my chest for the dialysis and completed 3 months of it. When I went in to have my port removed I wasn’t feeling great but that’s expected. When they pulled it out, gross puss came with it. I was admitted again.

Coping with infections

My first infection, why is this happening? I’m only 34. Apparently lupus treatment and all makes you vulnerable to every single germ. I had a staphylococcal infection. For the next 6 years, I would be treated for this infection on and off several times. From my chest, it moved into my knees. It seemed every time one knee would get cleaned and scraped and rehabilitated and home for a few weeks, the other knee would get infected. Then in 2014 in between infections I had been on my period for over a year and it was determined that I needed a hysterectomy. Yay! More surgery.

My knees still kept swapping infections until it moved into my tibia on my right leg. The doctors in my local city were up in arms as to what to do. They were going to amputate. My husband said No! Fix it! We found a surgeon in the bigger city that specializes in saving limbs. She worked tirelessly on my leg for the next couple of years. I had antibiotics in an IV at home and nurses and blood clots and more surgery and antibiotic wafers inserted to my leg.

A successful procedure

Finally in 2015 I had a procedure called a gastroc flap. They take a portion of your calf muscle and move it to the top of your leg on the opposite side and it’s supposed to help healing and fix this infection problem. It worked!!!

My lupus has finally gone into deep remission! But I still had a weird cough.

Myositis

2017 I get another doctor added to my team. A lung specialist. Although my lupus was in deep remission I had developed another autoimmune disease. They said this is so rare to have with lupus in remission. It’s not a piggyback disease like RA or your Raynauds, it’s completely separate. It’s Myositis. You have interstitial lung disease. What!!??? Why has this happened?

My faith

So since then, I’ve been on oxygen at night and during exercise. I’m on immune suppressant medication and I do ok day to day. I’m mostly tired and achy a lot, but I have my leg and I’m alive.

I believe God has brought me through this to share my story and faith. With out Him I wouldn’t be here. Thank you 💜

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?