Ta’Mika Miller's Story

What were the steps leading up to your diagnosis?

I found out I had lupus when it was almost too late for me to survive. I had no idea that I had lupus before my hospitalization. I was in good health, attending college, and living a regular life. In 2006, I had some kidney complications and I was diagnosed with glomerulonephritis, but none of my doctors thought it was necessary to test me for SLE. I was treated for that and things went back to normal by 2008.

In 2012, I started having symptoms that I thought were related to arthritis due to my active participation in band, but looking back they were actually signs of SLE and I had no clue. I didn't even know what lupus was – I had never heard of it. A few months later I was getting ready to go to class and when I looked in the mirror I noticed I had a droopy right eye. I am the type of person to keep going despite what’s going on, so I continued with my day. By the middle of the day my motor functions started to slow down and I felt myself losing energy.

I went to the ER and they wanted to do a MRI, but I told them no. I refused medical treatment because I was 17 hours away from home. The only thing on my mind was getting home because an MRI meant that something serious was wrong with me. I bought a bus ticket and rode it 17 hours from North Carolina to Michigan. Once I arrived I went straight to the hospital. I was diagnosed with a six-centimeter brain aneurysm and was rushed into surgery.

A week later I was also diagnosed with Guillian-Barre syndrome (GBS). While being treated for GBS I fell into a coma, which was caused by lupus. How all of that happened is still a medical mystery and none of those diagnoses had any connection with my Lupus diagnosis. Everything happened so fast.

What lifestyle changes have you needed to make?

I have had many lifestyle changes – the first was spending eight and a half months in the hospital. Three and a half weeks of that time was spent in a coma.

Once I came out of my coma I was quadriplegic and unable to talk. I had to learn how to do everything over and that was the biggest challenge of my life. Even though I am now fully functional, I still am not 100%.

I can feel the difference after being sick. I have to be more conscious about germs to make sure don’t catch anything because lupus patients don’t heal as quickly as others and that has made me extremely paranoid.

Who has been there for you? How?

The main person who was there for me has been my mom. She dropped everything to be with me throughout my whole journey. She even lost her job because of it.

I went through a phase of feeling guilty because losing her job was ultimately my fault, but she assured me that my health was more important than any job. The company knew the situation and wrongly let her go.

After I thought about it, I was glad my mom lost her job because I found happiness in knowing that she never has to work for a company that doesn’t value the importance of family.

I never would have made it this far without her encouragement, faith, and persistence. I will never forget when people were trying to convince my mom to take a break from being at the hospital with me 24/7, she would always tell them. "We walked in here together and we are going to leave together. When she leaves, I leave." And on November 30th, 2013, that’s exactly what we did.

I have also had the support from my amazing church family and friends.

What accomplishment are you proud of?

I am most proud of returning to school to obtain my degree. Being able to come from a wheelchair, walker, and a cane to walking across the stage with no assistance was unbelievable. It is a moment in my life I will never forget. It will forever be the greatest accomplishment of my life.

What's your advice to someone else living with Lupus?

My advice to people living with lupus would be to LIVE. There is so much to deal with while living with lupus, but we have to live first. Don't let the baggage from our disease make us miss out on life. Yes, there will be ups and downs, but what’s life without them?

We had a life before our diagnosis and we should have a life after it. Encourage yourself to make it through any obstacle so you can live and enjoy life regardless of your situation. We will have bad days, but we can't have those days everyday. We need to hold our head high and P.U.S.H – persist until something happens.

Is there anything else we should know?

I love being creative and trying new things. I enjoy the feeling of accomplishment. I like proving people wrong. The worst thing you could do is tell me that I can't or won't do something – you will regret the day you ever said that to me.