Robin A. Stevens' Story

What were the steps leading up to your diagnosis?

In 1997 I noticed my left ear was badly swollen and it felt like I had a jawbreaker in my mouth. The whole left side of my face hurt so bad. All of a sudden I couldn’t wear my contacts because of dry eyes, I couldn't get enough to drink, and I was so tired all the time – it took everything that I had in me to climb the stairs at work.

In 1998 I went to see a doctor about it. My doctor wasn't sure what was happening, so she sent me to an ENT doctor. He took a look and said, "I believe you have Sjogren's syndrome." I looked at him and asked, “What the heck is that?” He did blood work and had me come back to go over it. He was right on target, I did have Sjogren's syndrome. I had no idea what that was or how to pronounce it but, bless his heart, he was so patient with me and explained it all. I was scared and got panicky about it, but he calmed me down and referred me to a rheumatologist.

It just rolled downhill from there. On my first visit to the rheumatologist, she suspected that there were other problems. So, through more blood work, she found that I tested positive for systemic lupus and rheumatoid arthritis. I had heard of those conditions before, but didn't know a lot about them. My parotid glands stayed swollen for a long time after that, and the dryness continued. They started me on Plaquenil and I have been on it continuously all these years. Of course, with that medication I have to go every six months to see an ophthalmologist, to make sure there is no retina damage.

As with most autoimmune diseases, when you get one, others are bound to follow. Since 1998 I have been diagnosed with not only Sjogren's, SLE, and RA, but also asthma, fibromyalgia, spinal stenosis, degenerative back disease, chronic bronchitis, carpal tunnel in my right hand, GERD, and acute anemia. In the past six months, I have found out that I also have stage 3 chronic kidney disease and osteoporosis in my lower spine and my left femur. I am now being tested for celiac disease and diverticulitis. Unfortunately with Sjogren’s, you end up with dental issues along with the dryness in your body. Unfortunately, I lost all my teeth and had to get dentures. That was very hard for me. With lupus you are going to either have discoid or systemic, or both. In my case I have the systemic side of it and it attacks my lungs, stomach and kidneys. I ache all the time, but I just roll with it.

So many doctors and so much medication. Not every person reacts the same way to these diseases or to the medications, so it has been a trial and error kind of thing. It has been a long journey of finding out what works and what does not – finding that right combination of doctors, medication, proper diet, rest, relaxation and support that benefits you, to keep me as healthy and comfortable as possible. To help with the dry eyes, I use Restasis, and it is really good.

What lifestyle changes have you needed to make?

I have tried to limit stress and I have changed my diet around. I am a beach lover, and I manage to still enjoy the beauty of the beach while working around getting in the sun and becoming overheated. I had to start limiting the number of hours that I worked and then, unfortunately, it became difficult to work at all anymore.

I have tried to pay more attention to my body and listen when it tells me to slow down and take time to rest. I have to avoid others when they are sick, as well as limit the amount of time I spend out in the public.

I have had to get used to using an inhaler and doing breathing treatments. I always have eye drops, nausea medication, tissues and a calendar of my many doctor appointments on hand.

Who has been there for you? How?

God has been by my side through it all.

My mom has been there from day one. She has taken me to doctors appointments, to the pharmacy, and been at the hospitals. She has brought me meals. My children have helped me around my house, fixed meals for me, taken me to doctors, etc. My family is just awesome. They have been there in so many different ways.

I also have a wonderful group of friends that I have known for some 20-40 years now. They are more than my best friends, they are my sisters, my family. They have been there to cheer me up, give me gifts, sit by my bed, bring me meals, listen to me cry and scream, hold my hand and make me laugh.

My ex-husband was there until 2009, but he felt that my being sick was holding him back from living his life, so he left. But that’s okay because my family and friends had it all under control.

What accomplishment are you proud of?

I got divorced and became stress-free. I found me again – I found the strength to fight again. The lack of stress decreased the flare-ups I was having.

I lost over 40 pounds, got my asthma under control, and became a healthier, happier person. I am so proud that I got back to some of the things that I enjoy, like going on road trips with my sisters, attending family events and traveling.

Despite being limited with the amount of energy I have, I persevered and moved forward. I am so proud of how strong I have become. I have to pace myself a lot, but I do accomplish my goals.

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

Giving up is never an option. Hold your head up, inhale, exhale and keep going forward. Don't ever give anyone so much power over you that it keeps you from staying healthy and strong. Don't let stress control your life.

Have faith and hope that God is always by your side to walk with you through the darkness.

Know that you are never, ever alone. You do have kindred spirits out there who know what you are going through.

Is there anything else we should know?

It is never a dull moment when you go on road trips with me. I love my life and I am living it to the fullest.

I am getting sicker every day and I don't care. I will not let it define me any more than I can possibly help it. It gets me down, but then I get right back up again.

I have always loved roller coasters and this has been a crazy one, with so many twist and turns, but I am okay with that. There are lessons to be learned sometimes during those rolls and turns. Isn't that the way life is anyway, sick or not? There are always ups and downs. Just sit back and make the most of the ride. I know that I do.

I am really into genealogy, so when I have those moments of feeling bad and feeling alone, I do genealogy, which is a way for me to channel my emotions. I’m just weird like that – but I love being me.