Where’s My Compass?

I’ve spent a good part of my last two years in search of a diagnosis. At times, especially recently, it has been the Holy Grail in my quest to find out what is wrong with me. For the most part, Doctors have just scratched their heads and given me “guesses” on what I might have. The first Neurologist to come close to giving me an actual diagnosis told me that he “thinks” it might be the one with a short life expectancy, but he wanted to have it verified by a specialist.

Finally I was going to get some answers, and an actual diagnosis! I was so excited that I posted about it, wrote a blog article about it, and started a countdown for it. Only to have it turned upside down and given another “possible” disease that I might have. I should have been ecstatic that I wasn’t dying from something, but instead I was disappointed that the elusive diagnosis was once again slipping through my fingers.

The last couple of weeks have been kind of foggy for me. I haven’t been the life of any party, just the opposite (sorry dear). I was SURE that the Doctor would finally tell me what the heck is going on with my body and mind. Nope. Just another guess and another drug to try.

diagnosis  [dahy-uh g-noh-sis]

  1. the process of determining by examination the nature and circumstances of a diseased condition.

The doctor has me taking a drug that reduces my symptoms, but leaves me feeling depressed, unexcited, foggy, slow, dimwitted, lost, forgetful, distracted, stupid, and lost (I think I said lost already but I’m not sure). At what point do the drugs take away who I am, for the sake of fixing my shakes (tremors)? Why was I so much happier, when I thought that there was a due date, than I am now? Why can’t I get my head around this new diagnosis? Sometimes I feel like I am a guy in a rowboat, sitting in the middle of a huge lake, with no oars. Even if I knew which direction to go, I can’t get the boat to move. Every shore is equally far away.

Some clarity came from an Instagram post from a chronic pain sufferer. It read: “Not everything is a disease. Not everything needs a diagnosis. Not everything has an origin. Sometimes our bodies just don’t feel like playing along.”

What an interesting way to see things. Does that mean I DON’T need a diagnosis to move forward with my life? It has gotten me to thinking about how a confirmed diagnosis would change how I direct my life. Will it take away the aches and pains? Nope. Will it stop the shakes and jerks? Nope, not unless I drug myself up really good. Will having a label put on my condition possibly benefit me, and the type of life I live?

I am starting to doubt whether a doctor is even necessary at this point. How much money will I spend in the next few years just to have them try new meds on me? How many MRI’s will I have to pay for just to see if my brain looks the same as the last five MRI’s?

All of the potential diagnoses that have been thrown out at me have one thing in common. They are unfixable, they have no cure, and are usually “managed” by drugs that come with negative side effects. Sounds like a pretty simple management plan would be to just live each day to its fullest, however shaky that day may be. A new online friend calls it “Living with a Jerk”. I can do that.

7 thoughts on “Where’s My Compass?

  1. I am of the makeup that I would need a diagnosis. An actual name to what is happening to my body and mind. Continued prayers for you and your family.

    1. I have been the same way Shawna, but when I came to realize that no matter what they call it, will change nothing. It will just be a different label for the same symptoms. If I can take away the label, then I can focus on managing symptoms.

    2. That has been the same for me Shawna. But I have come to realize that no matter what the label is, the symptoms remain the same. If I let go of needing a label, I can focus instead on management and self-care.

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