I have an autoimmune disease…and it’s ok.

In 2012, I began a very important journey. I have always wanted to share the experience, but so much has happened, I have learned and grown so much…I never quite knew where to begin.

Then I knew. Last weekend, I sat with a group of my closest friends for dinner and a game night. These are people who know me very well, who I spend time with almost daily. In our discussion, someone mentioned my autoimmune disease. One of my friends looked up and genuinely was shocked to learn I had one. ‘You do? What is it?’ This friend, the one that knows me and my family so well, was in complete shock to learn this. It was then that I knew…if I want to talk about it, I need to start at the beginning. I don’t talk about it very much, if at all.

In September of 2012, I was hit by another driver while sitting at a stoplight. I was newly pregnant. Almost immediately, I felt the familiarity of contractions and knew it wasn’t good. We later found out I had in fact lost the baby. It was heartbreaking, but what happened next was truly bizarre. I was trying to carry on with my life. But every day, I felt weak. I was losing a ton of weight, felt shaky and fatigued. I would muster energy to get through the day, but was so exhausted at the end I could barely function. I was routinely going to the OB/GYN to make sure I got through the process safely, but they felt like my symptoms were just due to emotional upset of the loss and presenting physically.

On Halloween, my husband was traveling, so I took a then 3 year old Briggs to our annual kids Halloween party. I remember struggling to stand. I remember talking to my friend’s husband and saying, ‘I am so sorry, I have to sit.’ I almost passed out…everything was turning white. I could hear my heart beating (it’s an odd sensation to describe) and it sounded like a washing machine in my ears. Something was wrong. One of my best friends, who is a PA, came to meet me to go trick or treat with Briggs and I. She took one look at me and said she knew it was bad. She took over: she took Briggs trick or treating. I watched on the sidewalk…I could not get up the steps. We came home and she got him to bed. I tried to walk her to the door and needed to lay on the floor. She laid with me and said ‘we have to find out what’s going on. Let’s focus on keeping you safe right now and I should have your labs tomorrow.’

The next morning, she called and told me my blood count was very low. One of our other best friends drove me to the hospital and my husband flew home. I received two blood transfusions and was sent home to rest. Two days later, I woke early in the morning, shaking and feeling terrible. I woke my husband and said ‘we need to go the hospital.’ I called my father while laying on the bathroom floor (he is a physician) and remember trying to explain how I felt. I kept saying “it’s just bad.” He told me to go to the ER. I kept telling them ‘something is wrong. I am dying. I just know I am dying.’
They took me straight back and began tests. They discovered my blood count dropped drastically. That was not what was supposed to happen, especially since I had just received two transfusions.

No one had answers, so they began ordering a ton of tests. I remember at one point my heart began to do weird things and the nurses ran in. They started putting things in both of my arms to give me two blood transfusions at a time. I looked at one of the nurses and said ‘I’m dying, aren’t I?’ And she said ‘no, we don’t say that here. I need you to have strength right now and be positive.’

I was in the hospital three days, had several tests done, and received a total of 6 blood transfusions. Yet, NO ONE had answers. I had been losing blood, but not in a way that could be seen. I was experiencing what is called hemolysis, where your blood essentially breaks itself down. I was not bleeding, yet I was losing blood. It was very scary.I remember looking out the hospital window. I wanted to leave. I wanted to be better. So I just decided I would will my body to comply. The third day, a doctor stood at my bedside. She said ‘everything looks fairly normal, some things are off but not alarming, but we really don’t know what happened to you.’ Since my blood stabilized, she told me I could go home. I was elated.

My friend and father both wanted me to go to a hematologist. I am so grateful for my friend who kept fighting for me when I was too weak. She arranged the appointment with the hematologist and I went to see him. He ran more tests. And more tests. He said it was a genuine mystery. He met with the other hematologists in the practice who agreed that my case was puzzling. They decided to send me to a top hematologist at Duke Hospital.

My husband and I went together-he was my rock through it all. After a series of tests, the hematologist came in and said ‘your blood is fine. Your blood is completely healthy. You do though, clearly have some sort of autoimmune disease. Probably lupus, but I don’t know. You need a rheumatologist.’

He was going to keep me at Duke, but I knew who I wanted to see. He is one of the top rheumatologists in the area and is also like an uncle to me.
The rheumatologist ran test after test. I remember the call. ‘We got your labs back and you have Sjogren’s Syndrome.’ Um, ok. I have what?!

Sjogren’s Syndrome is an autoimmune disease that is a chronic and incurable condition. My body attacks my lachrymal and salivary glands, which cause me to have dry eyes and not produce enough saliva. It is uncommon, but becoming more widely recognized, especially thanks to Venus Williams bringing the condition to the spotlight.

We often refer to the times our body is under attack by calling it a ‘flare.’ When I have a flare, the same things always happen. I can feel it in my neck and face. I experience the Sjogren’s fatigue (one of the things it is notorious for) and memory fog. Sometimes, when I am talking to someone and feeling completely fine, I am stricken with overwhelming exhaustion. It can be so frustrating, especially with my kids the ages they are. The condition goes far deeper than just dry eyes, but I don’t want to focus on that. Here is a great resource for anyone who wants to understand Sjogren’s a little more: Sjogren’s Syndrome

Fast forward to today…I have learned to live with this condition so well that I forget I have it most times. I have Sjogren’s, but I REFUSE to let it have me. It took a while to get to this point, but through positive thinking, meditation, and learning to listen to my body, I was able to relieve myself of many of the symptoms. I did not grasp the reality of what I had done for my health until I watched the documentary ‘Heal’ and it clicked-I unintentionally aligned my life to be well. And with that, I feel healthy and vibrant. I still have some work to do: I am determined I will get rid of it entirely.

There are two things I would like anyone who reads this to take away:

1. You should feel good. Very, very good. Life is supposed to feel good. If you do not feel well physically and you are not getting answers, take charge of your health. You are not crazy…even if blood work leaves doctors scratching their heads. (I will delve into that more.)
2. You are the one who has the power to make yourself healthy and happy. Getting there takes a lot of enlightenment, but if you decide to be healthy, you WILL be healthy.