Learning to Live With An Auto Immune Disorder


When I first got sick, I had no idea where my journey would take me. I had to learn a lot of new things. Originally, I thought I had the flu. Then my tonsils needed to be removed. The next thing I knew I was seeing a gastroenterologist. My body wasn’t right and no one could tell me what was wrong. In my first post I explained a little about how things got started. and I never thought that I would have an autoimmune disorder that would essentially leave me “disabled” and left to learn a whole new way of life.

I saw several specialists from gastroenterologists to neurologists until I found a wonderful doctor at the University of Florida – Shands Hospital. I really appreciate that she never gave up on me.  She was able to determine, through a lot of testing, that I had gotten a virus that attacked my vagus nerve. The vagus nerve runs down your spine and controls your vocal cords, heart, lungs and gastrointestinal track.

At the point that I met her, I had been unable to speak regularly for almost a year. I was constantly nauseous and vomiting.  My motility had slowed in my entire digestive tract. My heart rate was extremely fast and I was blacking out and falling. Once she explained the vagus nerve, we all had one of those light bulb moments where everything made a lot more sense. The part of me that was broken was truly causing all of my problems, and boy did I have a list.

How I Learned To Live With My Diagnosis

Patience. I had to learn patience. This was not easy. I had to realize that there was no magic pill or operation I could have that would make me better. I had to learn that life would not be easy.  However, it was my life and if I wanted any enjoyment in it, I would have to accept my future.

Then one day I was talking to a woman about some health issues that she was having, and I started offering a little bit of advice on questions she should ask her doctor and maybe a couple of tests to consider. I don’t claim to be a medical professional, but I do know the frustration in not knowing what is wrong. I know what its like to feel scared and alone. So in that moment, I realized if there was one reason in this world that God would put me through all of the anger, frustration, depression and anxiety I had over my illness, that I was here to help someone else. Even if that is one person.

Moving forward, I became more accepting and more understanding. And then back to that word…patient. With any medical diagnosis you have to be patient.  Being patient is the key to dealing with any medical diagnosis – definite pun intended.

I had my fair share of doctors that really made me feel stupid, and that everything I had going on was all in my head. I didn’t stop with those doctors and I didn’t give up on myself. The doctors didn’t tell me what I wanted to hear either. I found doctors that gave me answers. I needed to learn how to live my life again.

Thanks for stopping by and reading more of my story. I will be sharing more in the upcoming weeks about the different disorders I have and tips on how to deal with them.

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