Visit http://csfinfo.org for more information and a growing body of research on Chiari. Be sure to wear purple to help spread awareness during the month of September!
Jan 27, 2017
In the middle of difficulty lies...opportunity?
As I sit quietly awaiting a CT scan of my diseased sinuses wearing a 24-hour holter monitor, a neck brace and a mask over my face to protect my weakened immune system in a waiting room full of strangers, I wonder, when did my life get so complicated? Just under ten years ago I was having the time of my life, working and going to school full-time while enjoying an active social life. I have to be totally honest here: I really, really miss those good ol’ days, before chronic illness struck out of the blue and overnight. Since 2007 I have endured countless doctor’s appointments, invasive tests, and probably had hundreds of tubes of blood drawn out of my body. Diagnosis after diagnosis has accumulated on my medical record, which has now become a dauntingly long and complicated list. I Just. Want. To. Be. Normal. Again.
In the midst of the worst sinus infection of my life I reflect upon these things. Two and a half months of antibiotics and on my third one now and we’re deciding whether or not it’s really time for surgery, which has been delayed for a few years due to a host of new and complex conditions arising. Sinus surgery has not exactly been top priority until now, because the antibiotics have stopped working. I am terrified at the prospect of surgery, but my facial pain is so severe and unrelenting that I am desperate for some relief. A whole year of steroids have wreaked havoc on my immune system and my body needs a break from fighting the giant sinus infection that is my life.
I’m certain many of you can relate to how I’m feeling. Frustrated, overwhelmed, angry, perplexed, scared and a bit sad that I’ve had to endure so many maladies over these past ten years while the majority of my peers have been living it up: traveling, partying and achieving major milestones. It was definitely not easy losing most of my twenties to chronic illness. 30 was the worst year yet due to getting hit by yet another scary and sudden illness called Guillain Barre Syndrome, which stole my ability to walk within three days time, and which I’m still not completely recovered from. I still have some residual nerve damage in my legs and probably my arms, but at least I can walk again and open a package of cheese for myself. So far 31 isn’t shaping up to be so grand either. My chronic sinusitis is clearly kicking my butt and with that I’ve had some frighteningly familiar neuromuscular symptoms return. I could scream from the sheer frustration of still being a reluctant passenger on the seemingly never-ending doctor merry-go-round.
But, if the words Albert Einstein so eloquently spoke are true, does opportunity really lie in the middle of difficulty? Perhaps I should be approaching this surgery optimistically, as the goal is to help me breathe better, which may end up improving many of my other symptoms as well. It’s all about shifting my perspective of the operation from fear and dread to optimism and opportunity.
I hope you, dear reader, have been doing well during my absence. It’s the beginning of a new year and I wish you improved health and happiness!
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