Susie Flenniken's Story

What were the steps leading up to your diagnosis?

I had just gotten married in 2001 but by 2002 I was extremely fatigued. I kept getting these horrible sores around my hairline. If I went to the lake, within an hour I'd be sick & nauseated. My feet would swell and the pain was bad. My joints hurt. I would get a bad rash where the sun hit me. I just thought I had the flu but after three weeks of being in bed or on the couch I knew something was up. Fortunately I have a great family doctor, who listened. Took blood tests then sent me to a rhuematologist who did extensive blood workups.

Finally after six weeks of their putting their heads together and getting my results I was diagnosed with Lupus SLE. Next up: prednisone and Plaquenil. I was in denial so I sought a second opinion. Same thing. What I didn't know was things were about to get worse, and they did. So far I've ended up with kidney damage, chronic pancreatitis, heart issues, skin problems – the list goes on. I'm on a carousel at the fair, it seems like.

Who has been there for you? How?

My husband, my sister and brother-in-law & several dear friends. Also my grandsons! One is seven years old, the other four. They can tell when "Gram is having a lupus day," and will give me hugs or a prayer. My husband wasn't so great in the beginning. He didn't understand it and resented me. But as my health worsened and I ended up in the hospital numerous times he realized he was about to lose me. So he stepped up and said “I'm here for you.”

My sister literally saved my life. I had lost a tremendous amount of weight due to a pancreas and bile duct issue from lupus. I went from 109lbs. to 86lbs. in four months. After I got out of the hospital they nursed me back to my original weight and supported me by allowing me to talk about lupus SLE.

What lifestyle changes have you needed to make?

I had a great job in the judicial courts. I also trained horses. I had more than 60 horses, which we'd train to show and for the rodeo. I worked in the film industry doing horse stunt work and training. All of that came to a screeching halt. I didn't have the strength, energy and presence of mind to continue my busy, active life. I had to slow down. It's been a learning and grieving process.

Learning when I need to take it easy, or seek medical help for my kidneys, pancreas and grieving the life I once had. I wasn't the woman I use to be. She was gone and I had to learn how to live my life with lupus. Which every day I still learn something new. I got mad, mad at Lupus, and I fight it every day. I eat healthier now as I try to keep stress to a minimum.

What accomplishment are you proud of?

I'm proud that through all the struggles I'm able to say, ‘tomorrow is a new day.’ I'm proud that I'm still able to laugh even though I might be scared or in pain. And I'm proud of the fact I have two grandsons that have learned compassion for others by loving me and learning they make me smile, which helps me so.

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

To not listen to the people, family or friends who don't have lupus but have all this advice about "if you do this or that I bet you'd get over it." Over it? It's not like lupus and I are dating and I'm trying to break up with him! And the old "give it time as time heals all wounds" is not what I need! Understand that most people do not understand, so allow their comments to roll off your back. Don't ever feel like a burden or "less than", instead be proud that you are able to live a life with lupus and fight it.

My mantra has always been: I have lupus, but it doesn't have me. I'll fight it with everything that is available to those of us who suffer from it. Knowledge is key and awareness is growing. Finding new medications that will help us and praying they will find a cure keeps me full of hope!

Is there anything else we should know?

I grew up on a cattle ranch and raised cattle and horses most of my life. After my lupus SLE diagnosis and with being so ill I decided to learn to play bass guitar to exercise my painful fingers. I've learned and it's fun. But I've been in a flare lately so haven't been playing it. But I have hope it will pass and I can play again!