LET’S GO BACK TO THE BEGINNING

In the early 2000’s, I was raising kids, working, & coaching. I ran nearly every day. It was my time, a chance to let go of stress & think over things.

My sister snapped this picture of me. It’s the last picture I have of my “normal” self. Shortly after this I began treatments and became unrecognizable.

Suddenly I’m dropping things, I can’t think clearly & I’m stumbling. I go to the doctors. Lucky for me, I’ve had the same PCP for years. She knows me & she knows something is wrong. But every specialist she sends me to has the same frustrating responses, “you’re tired, stressed, depressed, overwhelmed”. No matter how many doctors, no matter how much worse things are getting, it’s always the same story, my brain is the problem, not my body. I call bullshit & fight harder for an answer. My PCP searches for answers and treats my symptoms, but I am not her only patient.

I see so many doctors and have so many tests. Finally a lab comes back and my pcp has an “aha” moment. She sends me to a rheumatologist. My lab tests are sent on ahead & I get my appointment set. I’m full of hope for my future. Finally, I’ll get some answers and start feeling better.

No one wants an illness. But when you watch tiny pieces of your life taken away day by day, you want some knowledge as to what the hell is happening! Something you can research, educate yourself about and prepare to fight!

At this point I can no longer run. I’ve given up careers I worked hard to earn. My house is a mess, I’m a mess & I just want someone to tell me what I can do to get my life back.

The day of my appointment arrives and I’m ready! My husband goes with me. We are nervous but hopeful. Then “he” walks in the room. This doctor barely looks at me. He says, “I’ve seen your tests, but you don’t have what that result indicates. I see no telangiectasias.” The first of many medical terms I can’t pronounce, that I will hear over the next several months. He then tells me he believes it’s mental health related but could be neurological. He recommends I see a neurologist.

I waited months for this appointment. I had my hopes so high that we’d get answers. This fucking jerk just looked at me for 5 seconds and told me I’m crazy. I left feeling defeated.

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