Healthcare Starts at Home: You Are Your Own Best Advocate

Listen to Your Body

When we are thirsty, we drink. A growling stomach demands sustenance, and we answer the call. Sometimes our bodies even threaten mutiny and order us straight to bed. Illness and infection trigger an alarm. Like the fearless troopers they are, an army of antibodies heeds the rallying cry and rushes in to battle against the invading illness. Alerted to the silent war waging within, the brain sends warnings our way as symptoms like muscle aches, sniffles, and fatigue. The system works like a well-oiled machine until it doesn’t. What happens when those simple messages are a jumbled mass of seemingly random and unrelated symptoms of, well… everything?

Document Everything

I cannot stress enough the importance of keeping a journal. The fact is, when your head hurts one day, your throat the next, and your big toe the day after that, it gets a little hard to keep it all straight. By the time you get to the doctor’s office, the one symptom that stands out is the one that bothers you the most. In my case, that symptom was muscle weakness, extreme fatigue, and pain. To be fair, my energy reserves were so limited that I would get up in the morning and start a pot of coffee and take a nap to recover from the exertion. My muscles were so weak, my arms and legs trembled when I lifted a coffee cup or stood for more than a few minutes. Muscles I didn’t know I had screamed in agony every time I moved. Those were the symptoms I thought of at my many appointments. 

I forgot about the little things like losing my voice when I became tired or if I talked too much. I didn’t even think to mention that I was often easily winded. Had I thought to mention all of my issues, I like to think one of my many doctors would have put two and two together and come up with four. Instead, it would take a litany of tests, misdiagnosis, and over ten years to receive an accurate diagnosis and treatment. My doctors, all of them, tried. They assured me something was wrong, and I was not crazy when I offered myself up for psychiatric evaluation and I am eternally grateful. 

Research 

Doctors run tests based on the information we give them. Trained professionals in their fields, though they are, they do not read minds. Unfortunately, symptoms do not always come in a neat little package. They are all over the place and difficult to pin down or require the right specialist to diagnose. After negative testing for everything from Multiple Sclerosis to brain tumors in the early days, my doctor treated me for essential tremors. I am a researcher at heart, so I went straight to the library (yes, I am that old) and did what I do best. I arrived at the next visit armed with a list of reasons that diagnosis did not fit. Eventually, my physicians settled on Fibromyalgia and that I was losing muscle strength for an unknown reason. My neurologist at the time said I should accept pain killers and use a cane while I could, but it would be wise to prepare for a wheelchair in my near future. I took nothing stronger than Ibuprofen for pain, and I kept searching for answers.

Interview Your Doctor 

Your health is worth the time and effort it takes to find the right treatment. It took more than a decade, but I have my life back. I don’t think I can really explain just how hard those ten years were. I changed everything about my life over the years, trying to fix myself. Frustrating and time-consuming as it was, I went through doctors like tissues with a terrible cold until I was blessed with the right ones. I may not have been fully prepared with a list of symptoms, but I was not afraid to dive into what they told me. 

In the end, I learned I did not have Fibromyalgia. I have a rare autoimmune disease called Myasthenia Gravis. Those pesky tremors were muscle spasms, and the pain was from straining my muscles. Am I the easiest patient? Definitely not, but I am my own best advocate.