November 29, 2018

Making the transition from being a young person with lupus to an adult is something that many of us go through, and it’s not always an easy process.  I recently shared my story at the American College of Rheumatology Meeting in Chicago.  It was a great experience.  Not only did I get to speak with rheumatologists and researchers, but I was also excited to meet other people with lupus.  They understand what I’m going through every day.

Background/Diagnosis

I was diagnosed with lupus at age 15. I was starting my sophomore year of high school and noticed a rash that the doctor said was eczema, but I knew it was not. I wasn’t feeling well, I had pain and my hair was falling out. My mom took me to the hospital and I was diagnosed with lupus. I was hospitalized for a month.  I couldn’t take care of myself, I needed help to get dressed and eat, I was sore to the touch and I lost 20 pounds.

It was information overload. I was 15, I didn’t really understand what was going on. At first, I didn’t always take my meds. I was embarrassed. My peers didn’t understand. Whenever I tried to explain lupus, it was a pity party that I didn’t want.

I was a dancer and on the track team with two college scholarship opportunities. Lupus took that all away from me.

Treatment

After the hospital, I started treatment at a children’s health center, began getting better and went into remission.

The problem came when I turned 20 and had to transition to adult care. My new doctor started changing my medications, and I ended up hospitalized several times in one year. I was on methotrexate and folic acid and started having stomach issues. One day I was in so much pain that my doctor said to come to the office. After laying on her office floor she sent me to the emergency room without seeing me.

I never went back to that doctor. A friend of my mother suggested a hospital with a lupus center. I researched online and have been going there ever since.

I had to learn to be an adult. I learned how to advocate for myself. I used to keep things to myself and not share with my  doctor but learned to speak up.

For the 5 years in pediatric care I saw the doctor regularly and had lupus under control. Then in the initial transition to adult care, for about 4 years, I got worse. I had multiple hospital visits a year and seemed like I would never get better. I wasn’t comfortable or happy with the physician I was seeing or the treatment I was receiving.  I even independently stopped taking my prescribed medication.  Now I have a doctor who I can be honest with.  I can call her at any time, it’s like she’s a second mom. It’s worth the 1-2 hours it can take to get downtown.

Maintenance

I have done both physical and occupational therapy for my joints. I have changed how I eat, cutting out junk food. While I can’t run like I did before lupus, I do exercise. I know the signs that a flare is coming on and I get to the doctor sooner. I learned to explain what I need. Now if I end up in the ER I can advocate for myself.

Quality of Life

I am in school now and will finish my program this year. I take classes and am able to do easy temp work so I can call in day to day and not go in if I’m not feeling well. I am on disability and work part time to pay for school and my car.

I have potential job offers after graduation that are willing to work with me to accommodate my health issues. The disability office at school has been very helpful.

I was always angry, feeling sad, I didn’t know how to feel, had so many emotions at once, I felt confused and lost.

That one fateful trip to the ER made me realize I had to take control. I learned to accept the situation, manage it, and make the best of it. I now know how to take care of myself and how to work with my healthcare team.

Everyone’s lupus story is their own.  These are some tips that I found helpful in transitioning from pediatric to adult lupus care:

• Find a rheumatologist in adult care before leaving your pediatrician.
• Communicate with your doctor
• Take your medication – every day!
• As you get older, you’re less likely to have someone looking over your shoulder and telling you to take your medication, so keep your support system close.
• Vacations with family relieves stress and boosts my spirits.  It also helps to laugh and be loved!
• I’m no longer able to dance myself, but supporting my niece’s dance lessons brings me great joy.
• Accepting and Acting – I had to accept hair loss and breakage, so I cut my long hair much shorter.