(Title edit: Currently no cure. Hopefully it'll be fully curable someday.)
Valley Fever / Coccidioidomycosis can go f*** itself. 30 years in Arizona and it finally got me for the first time. My immune system's bat [nonsense] crazy response to it put me in the ER twice and had me needing a walker to even get out of bed.
I'm mad that I have to worry about this fungus in my lungs for the rest of my life. Seriously? I have a kid to raise and more life to live. I just have to hope my immune system can keep it trapped and that it never reactivates and spreads to other parts of my body? Every headache I have makes me paranoid it's meningitis. My back and neck are so sore - has it spread to my spine? How stupid.
I'm mad that finding a cure isn't "lucrative enough." Research is still pretty limited. Most Arizonans don't even know what valley fever really is or what it entails. Most doctors still misdiagnose and mistreat it. The anti-fungals some of us have to take wreak havoc on our body. (All this could be said for most illnesses, sadly.) Now I have to worry about my liver function and get it checked every 3 months? Cool. I guess going bald from the meds is the better alternative to hepatotoxicity.
I'm mad that my insurance provider denied my chest CT, which was ordered by my doctor, because they determined it was "not medically necessary." The double pneumonia the ER diagnosed determined that was a lie. Who are they to decide what's medically necessary over my doctor?!
I'm mad that I used to go hiking, gardening in my backyard, enjoyed breezy days, driving with my windows rolled down - all without a second thought. Now, I drive by construction sites and mutter expletives under my breath like a nut job as I watch them kick up dirt that I now assume has these evil spores in it. Somehow I feel betrayed by the place I've always called home, which feels stupid in itself.
I'm mad that I'm so worried that my child and husband will get it, too. Do we move to another state? Am I overreacting? I avoided it for 30 years, surely it's not that big of a deal? Everyone else makes it seem like it's not that big of a deal. "I thought only dogs get valley fever." "I know a guy who had it and was fine."
I'm mad that I feel guilty that so many people have it way worse than me while I'm over here just... mad. And scared. And anxious, paranoid, exhausted, sick. Granted, I'm grateful to be alive and am more considerate of those living with chronic and/or "invisible" illness. Couldn't I have learned these lessons without the incurable fungus, though?!
Sigh... Thanks for coming to my fungus talk.
Valley Fever / Coccidioidomycosis can go f*** itself. 30 years in Arizona and it finally got me for the first time. My immune system's bat [nonsense] crazy response to it put me in the ER twice and had me needing a walker to even get out of bed.
I'm mad that I have to worry about this fungus in my lungs for the rest of my life. Seriously? I have a kid to raise and more life to live. I just have to hope my immune system can keep it trapped and that it never reactivates and spreads to other parts of my body? Every headache I have makes me paranoid it's meningitis. My back and neck are so sore - has it spread to my spine? How stupid.
I'm mad that finding a cure isn't "lucrative enough." Research is still pretty limited. Most Arizonans don't even know what valley fever really is or what it entails. Most doctors still misdiagnose and mistreat it. The anti-fungals some of us have to take wreak havoc on our body. (All this could be said for most illnesses, sadly.) Now I have to worry about my liver function and get it checked every 3 months? Cool. I guess going bald from the meds is the better alternative to hepatotoxicity.
I'm mad that my insurance provider denied my chest CT, which was ordered by my doctor, because they determined it was "not medically necessary." The double pneumonia the ER diagnosed determined that was a lie. Who are they to decide what's medically necessary over my doctor?!
I'm mad that I used to go hiking, gardening in my backyard, enjoyed breezy days, driving with my windows rolled down - all without a second thought. Now, I drive by construction sites and mutter expletives under my breath like a nut job as I watch them kick up dirt that I now assume has these evil spores in it. Somehow I feel betrayed by the place I've always called home, which feels stupid in itself.
I'm mad that I'm so worried that my child and husband will get it, too. Do we move to another state? Am I overreacting? I avoided it for 30 years, surely it's not that big of a deal? Everyone else makes it seem like it's not that big of a deal. "I thought only dogs get valley fever." "I know a guy who had it and was fine."
I'm mad that I feel guilty that so many people have it way worse than me while I'm over here just... mad. And scared. And anxious, paranoid, exhausted, sick. Granted, I'm grateful to be alive and am more considerate of those living with chronic and/or "invisible" illness. Couldn't I have learned these lessons without the incurable fungus, though?!
Sigh... Thanks for coming to my fungus talk.