Amy Bollinger's Story

What were the steps leading up to your diagnosis?

My journey unknowingly began as a teen. I would get these blind spots in my eye which caused headaches and nausea. I would also get kidney infections and UTI a lot and had to be put in the hospital a few times. My parents and I thought it was just a normal little illness and headaches.

At 17, I had a 4lb 8oz baby boy. Not an easy delivery at all because I had preeclampsia, high blood pressure, my kidneys were shutting down and I had pneumonia fluid in my lungs. So an emergency C-section brought our beautiful son into this world and both left the hospital alive and well. One year 6 days later his baby sister entered the world and it was a very easy birth. Life went on and just like everyone else, I had ups and downs in life.

At the age of 20 with a 3 & 4 year old, I asked my Mom and Dad to please come and get me and my kids. I wanted a divorce from my then husband because I knew I wasn't happy anymore and had to do what was best for me and the kids. We were two young kids not ready for marriage. Then, out of nowhere one night, I was with my parents on our way back from Memphis when I had a pain below my breast bone shooting into my spine that broke me out into chills and then hot flashes. I was kicking and screaming so they drove faster to get me to the hospital. As we got closer, the pain eased up so we just figured it was the chili I ate. I just knew I never wanted to feel that pain again.

Since that night, though, that same level of pain is so expected that I get shocked if I go a day or two without it. I went to the E.R. so much they knew me by name. After test after test coming back normal I was then seen as a drug seeker. I just wanted to be fixed; I didn't want any drugs.

After seeing specialist in Missouri, Arkansas and even at the Mayo Clinic, each doctor started putting together the puzzle of the ailments of my life. Then after diagnoses of Hypothyroidism, R.A. Osteoporosis, Raynaud's, Sjogrens, Chronic Pancreatitis, came those words Lupus and Lupus Nephritis. So at a young age, I finally knew I wasn't going crazy and my pain was real.

I wonder if from the age of 13 when I was in Junior High if that was the wolf silently entering my life and little by little began to bite. I know at 20 years old he made it known and 20 years later he won't let me forget that he's there.

What lifestyle changes have you needed to make?

While I was not addicted to drugs before I got sick, I slowly became addicted to my pain and sleeping pills. I was depressed and didn't care if I lived or died. I spent most of my time in the hospital instead of at home with my 3 kids and husband. So I knew that if I didn't take control of my life, I wouldn't be around much longer. I don't recommend anyone to do this but this was the best option for me. I quit all of my meds; I flushed every pill in my home that I was on. I now take vitamins, watch what I eat and try to drink as much water as I can (and I don't care for water). I have not had a hospital stay in over 4 years. I do have bad days when I just rest but I have more of a life now than I had before. I've fallen many times but I always get back up. Life is a struggle and it’s not easy trying to just deal with the pain.

When I do get sick and feel I need to go to the doctor then I go. Like I said, this was the best option for me. I had no life before because the meds had side effects or just made me sick. Then you add on depression because of the way people treated me like I was just lazy or a druggie. Which eventually I felt they were right, because I did end up addicted to the drugs. Not because I was looking for a high though but because a wolf invaded my body and every bite he took and still takes hurts. In the end, I was seeking an escape from the pain, the disease and my life. So I could escape it and not be here this very day or I could take my life back and deal with the wolf my way when he attacked. I chose life.

What accomplishment are you proud of?

When I found out I wasn't alone or crazy that there were others like me, I started an online support group on Facebook and a couple of friends who are more like sisters help me with it. We remind each other to keep our happy feet on because God allowed us to wake for another day. I have met some of the best people who are now more like family instead of friends.

I now know who will stick by me when things are good and bad. I have found out how strong I really am. My 40th Birthday is April 28th so on May 3rd many friends and family are going to the Walk to End Lupus. My goal is to walk the 3 miles in honor of those who are fighting, those who will fight and those who have lost the fight. Each step will be for them all. Hopefully that will be added to my accomplishment list :)

Who has been there for you? How?

In ’98, I met my husband who I married in 1999. He has been there every step and done so much. Even to the point when I wasn't doing well at all and my breathing was very shallow. He stood by my bedside all night with his hand on my chest to make sure I didn't stop breathing even though I had a nurse in my room around the clock just to watch me. He held the house down and took care of the kids as best as he could with him working 2 hours away from home.

Family members also stepped up and helped my husband especially his mother and sister. Our two oldest kids helped with their baby sister who was born in 2000. They really had to grow up quickly because I was in the hospital so much. I carry a lot of guilt to this very day because of that.

My parents were always there to help or just be with me when I was 3 hours away from home in the hospital. I've always put on that brave face just so nobody would worry more than they already were. My dad was there to make his little girl laugh and my momma just wanted to take care of her baby girl.

So many other family members and friends that if I tried to name them and forgot one then I would be in big trouble. They know who they are and how much I appreciate them for taking me to the E.R., watching my kids, bringing me food in the hospital, sitting with me, and praying for me.

My rule if I was in the hospital was no tears and if I caught a tear, you were in trouble. If I saw you crying then I knew I couldn't draw strength from you if I needed it. My cousin took her crying outside after she was told there was no crying in Lupus. I'm as strong as I am because of their love. The Greatest love of all.

My Aunt even got a tattoo of Lupus wolf/butterfly with my name on her leg and made me a Lupus quilt and told me on my bad days to wrap that blanket around me and feel all of the families love for me. How cool and wonderful is that?

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

My advice is to remember that you're not the only one going through it. It affects your family. I realized this after fighting with my husband one night. I honestly at times thought he didn't care about me. Yes, even after the whole hand on my chest story.

He would hardly speak about my illness and he still won't to this day. He screamed at me one night “I’m not mad at you or blaming you. I'm mad because my job is to fix things and make things better and with this I can't." I realized at that moment he was never mad at me, he was mad at the wolf just as I was. Just as I take my frustrations out on him because I know he will always be there. Well, he was doing the same to me because who else was he going to turn to? He wasn't blaming me, his wife, but the Lupus and himself for not being able to fix me. So I let him know his only job was to love me, love me through it. So now if he gets aggravated over me not being able to get out of bed and calls me lazy, I just say it is the wolf he is talking to, not me!

I found that if I don't focus on how bad I may feel and focus on helping others by making them smile and find their positive light, then my positive light hardly ever goes out. Since I've started to count my blessings, I have learned to be thankful that I even have Lupus. Yes, thankful. Without Lupus being on my journey in life, I wouldn't be who I am today and I love me. I do hate not knowing how I will be feeling from one day to the next but Lupus is a part of me so I embrace it as best I can by focusing on the positive.

I don't live in fairytale land where it's all good all the time. The wolf is mean and his bite hurts badly, so you will have days that you will curse and that's okay and very normal. You may have days of depression, I still have those a lot. When my positive light does start to fade, well, all of a sudden a bright light hits my face and reminds me that I'm not alone. It's Karma from shining my positive light in someone's face when they were in the corner letting their positive light fade. Now that's some Karma that I don't care to come back around. So no matter how hard it gets, think about those blessing in your life and remind yourself that it could be worse because God could have not woke you up that day.

Is there anything else we should know?

Having an illness like Lupus and all of the ailments that comes along with it, does that make me unique? No....

Taking myself off all the medicines and only going to the doctor when I feel I need to, does that make me unique? NO!!! That's more on the borderline of crazy and brave. We're all learning as we go and all I know is out of the past 20 years, the past 4 have been the best.

Having three kids ages 22, 21 and 13 and a loving husband, does that make me unique? No. Having such supportive and loving friends and family, does that make me unique? No. Trying to find my way and my keep my positive light as I take this journey through life, does that make me unique? No.

I just thank God above that I'm uniquely blessed with so much love in my life. Love that prays for me, gives me strength, reminds me to put my big girl boots on, to smile, to look to the positive, to remind me to have faith and that hope floats. I hope that all find their unique blessings in their life and that they embrace whatever they may face and do whatever you need to do to keep that positive light shining brightly.