People who battle autoimmune conditions have what is not so affectionately known as flares. Every day brings something new, and often individuals experience symptoms that no one seems to have a clue about how to diagnose what is going on, or worse your physician ignores you. How do I know, because it happened to me on what seemed to be a regular basis!? This rough and rocky period of my life went on for approximately eight years.
Fortunately, now I have some doctors who actually listen to me, and don’t treat my like a “hysterical female”. After complaining about my brain not working right for the past eight years I found a neurologist who actually did a brain MRI. It is worth mentioning at this point that I used to be a total geek. I excelled at everything I tried to accomplish academically. It may sound somewhat narcissistic but I was truly gifted.
Then one not so fine day, I woke up and I couldn’t remember how to write. I couldn’t remember how to use verb tense correctly in a sentence. Writing was my first love in life. I have a degree in journalism. I remember yelling out loud, “What the hell is happening to me?” Sadly, there was only silence that filled the room.
One doctor prescribed D-Amphetamine for ADHD. That made some sense but in my befuddled brain I wondered why I had managed to survive academia without “speed” before? Still, I was desperate to hold onto what was left of my mind at that point so I did what every compliant patient does. I took the drugs.
Things went from bad to worse. My pain increased two-fold, my migraines came back, my chest started feeling like it was going to explode, and then one day I couldn’t read music either. Music was my second love in life. I only plink around on a guitar, but I used to sing professionally.
I am a strong woman, but that day I curled up in a little ball and sobbed my heart out. Physical disability is one thing, but losing your mind is a completely different thing for a person like me. Let me rephrase what I just wrote; losing your mind sucks for anyone!
Ok where was I going with this? Ah yes, the MRI. My other passion in life is reading, so I felt a trip to Barnes and Noble was in order, to bring me out of this state of hopelessness (Reading was also becoming a challenge). My cell phone rang while I was receiving a reader advisory from the clerk. It was my neurologist.
“Mrs. Weaver the test went very well, but we found nine lesions on the front of your brain that are consistent with Rheumatoid Arthritis or Multiple Sclerosis. We are not ruling out M.S.”
My tongue seemed to have gone numb as I struggled to say something back. “I’ve been having problems for years, but no one would listen to me.” Unwanted tears began to slide down my face.
“That is unfortunate,” the neurologist said.
Now I wait for test results, and I am off my autoimmune meds and have been for two months. I will be like this until the doctors have a definitive diagnosis. I will get through all of this, but I’ve learned that every moment in life is precious. Don’t take anything for granted, and don’t waste your time worrying about what other people think.
It is my sincere hope that other people who have chronic illness can learn something from this. Please! All of you keep a health journal and document everything that is out of the ordinary with your health. Find doctors that will listen to you. Maintain your dignity, but remember you are paying for a service, and don’t settle for inadequate health care providers. Don’t let what happened to me, happen to you. Wake up! This is your life.