Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
The Double Edged Sword Of Knowledge: The benefits and drawbacks of being “in the know”
“Unless we learn to know ourselves, we run the danger of destroying ourselves.”
― Ja A. Jahannes, WordSong Poets
As a lover of learning and a science nut, I have always sought and craved Information. As a chronic degenerative disease sufferer I have come to know it as double edged sword. There is still power in knowing, surely. But sometimes, the knowing steals the wind from your sails as you face the reality of degenerative disease.
I will admit, on more than one occasion, the fear of the knowing has stopped me from getting the testing and imaging done that I needed. After all, until I’ve seen the damage in black and white, it’s not official, right? Until that radiologists report hits the hands of my doctor, I just have some mysterious symptoms that could be no more than inflammation. And so, in the not knowing, there is solace, there is endless hope, but also, there is pain. Occasionally, those symptoms will subside on their own. Usually they do not and I eventually submit to the testing I’ve known I needed all along.
Next comes the “fun” part. The waiting. Despite my cool and calm facade I am not the most patient person in the world. Especially when it comes to test results. Once I’ve decided I want to know, I want to know now. Like NOW. Hell, yesterday would be better! Once I have flipped that switch from ignore it to action mode, it is time to be in the know. I’m ready to tackle the issue, so tell me the details doc.
Then come the results. Sometimes they are not what I dreaded. The excruciating foot pain I was sure was a sign of degeneration in that area of my foot was nothing but a ball of nerves. Simple change of footwear, stand a bit different to relieve pressure on that area, if all else fails a quick and easy outpatient surgery, snip, snip, good to go. No thorns or spikes from that diagnosis. (No heavy pills to swallow even.)
The same with the hip pain I have been struggling with. It’s “just swelling and inflammation associated with rheumatoid arthritis”. No remodeling of the bones, no spikes, no problem. Hope. Knowing the swelling will reduce and the hip will swing freely again. Knowing continuing to do what I’m doing and upping the anti with more anti inflammatories and a bit of pt will get it back on track.
Then come the results of the elbow imaging. Ah, here is the sword, open up and swallow! Remodeling, narrowing of joint spaces, and oh yeah, literal spikes! Several new medical terms and web pages later, I have a clear but somewhat depressing picture of the reality of the state of my elbow. It is damaged. It won’t straighten out because it can’t do that anymore. And the pain won’t likely leave anytime soon. They can probably grind off the spikes. But narrowed is narrowed and I’m stuck with that damage.
Poof goes the hope. Out come the tears. For a minute (maybe 5). The benefit of being a half glass is better than no glass at all kind of thinker. Hope always comes back. And that stubborn willful side that will not quit. I love that side of me. She is the warrior in me. Without her I would be stranded like a mastless sailboat on the sea. And so I wipe the tears, go back into research mode, and start to form a new plan. Because knowledge IS power. And there is always something one can DO to cope with or change their situation. So I’ll swallow that double edged sword. Because like every sword swallower past or present, I am a fierce, fearless fighter.
Tenacious ME 