Tammy Rosales' Story

What were the steps leading up to your diagnosis?

I had been to several doctors that diagnosed me with chronic fatigue syndrome, just worn down, depression etc. Not one of them tested me for lupus.

My all time low, the straw that broke the camel’s back, was at my mom and dad's in Nashville, Arkansas. I literally got up, ate a little bit of breakfast and immediately went back to bed – I felt like I was drugged. This was very abnormal for me; I was normally up and going in the morning. This day I could not get out of bed, exhausted, almost too tired to breathe.

When I moved to Dallas two weeks later, my husband (boyfriend then) found a rheumatologist and said, “You are going to see her.” I had my appointment, and when she asked me what was going on, I started to tell her what I had been diagnosed with. She stopped me and said, "Tammy, I want to know what your symptoms are, not what someone else has diagnosed you with." After testing and two more appointments, she informed me I had SLE. I was diagnosed in 2011, so I’m kind of a newbie.

Who has been there for you? How?

I have a very good support system in my husband Louis, who was instrumental in finding a doctor to help me. My parents, Rita & J.R., help us out periodically with the granddaughters, so that we can get away from time to time for "us" time. Our kids – Colton, Jordan & Caine, Tess & Piper, Jade, Thomas & kiddos, our granddaughters, Jaidin, Journei & Harlow – all know my limits and love me just the same. They’re always sending pictures of silliness and numerous I love you messages. They fill my heart with love!

What lifestyle changes have you needed to make?

I loved the sun, I was very active and would work myself like crazy! Now I wear tons of sunscreen, I'm always wearing thin, lightweight jackets to cover up and I wear big hats if I’m going to be out for extended periods of time.

I try to rest when I need to, but not going to lie, that has probably been the most difficult. I want to do things but my body won't cooperate!

I try to keep my stress at a minimum but that is not always possible. We are raising our three granddaughters (9, 6 and 4) whom we have had since the youngest was born. That can be super challenging at times. But I will tell you this, they already understand that JiJi (that's what they call me) has lupus and, as a result, limits. Well, from a child's understanding. Something fun the oldest one and I have done together is start a campaign called Pennies for Lupus. CoAmerica Bank even donated $1,000 to our campaign after hearing our story on the radio.

What accomplishment are you proud of?

I'm happy that I got involved with the Lupus Walk here in Dallas. We are the Krushing Lupus Krewe! But this year I was not able to attend due to complications with my lupus. I am on the committee for the Lupus Gala – hopefully my lupus will not flare and I will be able to attend. I am a registered respiratory therapist, registered polysomnographer (sleep) & RST (registered sleep technologist), as well as a wife, mother, grandmother, daughter, sister, aunt and friend.

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

Take one day at a time. Know your triggers and avoid them as best you can. Life will continually throw you curve balls, just learn to dodge the balls – you know, zig zag, never go in a straight line!

Get a good physician, if you don't get the results you are looking for, get a second, third, fourth opinion. Stay on top of the research! Investigate and try different techniques as far as treatments, diet etc. go. Don't be scared to go outside the box.

Is there anything else we should know?

Lupus will attack you in different places, so be vigilant. Most recently, I have been dealing with severe inflammation in the bursa sac of the hip joints, which causes severe pain and much difficulty walking, bending and lifting. I have tried steroid injections and I’m now attempting water therapy. I won't let this disease define me! Staying positive is the best medicine around. Cut the negativity from your life, whether it is friends or family – your life could depend on it! Love to you all and continue to keep the faith!