@rosemarya @janegigi Thanks for responding! I think the hardest part for me, aside from the physical pain of whatever autoimmune disease I have (we don’t know for sure, and we don’t have insurance, so all we can do right now is wait and see), is the fact that the rest of the world moves on while I’m still reliving those hellish two months over and over and over. Don’t get me wrong, there were a couple of wonderful doctors who went above and beyond—who definitely searched past Critical Care Myopathy to determine why I got so sick so fast, why my body didn’t fight off the subsequent infections that came after the initial flu that landed me in the hospital to begin with and why I went septic. But having to learn how to walk, swallow, etc., was all extremely terrifying and yet my immediate family doesn’t quite get how traumatic it all was. I did see my neurologist (I had epilepsy prior to this, onset when my five year old son was just a year old) did warn me that it would take me at least a year before my brain was fully healed, and to expect things like memory loss, fogginess, impaired judgment at times, and so on. He said we’d reevaluate everything 12 months from my discharge (I was admitted in my hometown but after the first week I was flown out while in a coma to the trauma unit at UAB in Birmingham, AL).
Words and terms like klepsiella, blood transfusions, bowel management system, staff, delirium, encephalitis, chest tubes….keep rolling around my head like loose marbles. I want to scream them into my pillow. I’m still coughing up phlegm. I’m still breathing with damaged lungs. I wake up, heart racing, expecting to be unable to move even the tips of my fingers. All I could remember was going to the first hospital, waiting there while they did exams and said I had double pneumonia (how, I thought? I only have a low grade fever and no cough). Then they ran a blood cell count and panicked. White blood cell counts like that look like leukemia. There was no room at that hospital but the doctor suggested heavily to my father and husband that a bone marrow biopsy be done, and quickly. They transferred me then by ambulance to hospital number 2, and all I recall is being checked in, vaguely being wheeled to a room to meet my father, then being told that because I had a communicable disease, they were isolating me. It’s lights out from there. Next comes what feels like months. Bizarre happenings, weird things that I can’t begin to put into words. They were all related to being in a hospital so it had to be delirium. Then I slowly wake up and figure out I’m paralyzed and that none of it was real, and that the medically induced coma (the coma was about two to three weeks) wiped out two full days of me being conscious and aware—texting and talking to loved ones prior to the coma, just poof—gone from my memory, along with about two days after being “woken up.” I have no recollection of my parents’ visit, despite interacting with them in some fashion (dad says he knew no one was home). I read those text messages later horrified. Was I scared of possible intubation? I must have been. I’m haunted by this. Why didn’t the psychologist at UAB discuss PICS with me? Hyperventilating on a ventilator isn’t much fun, I can assure you of that. It’s like running up the down escalator. It gets you nowhere and everybody stares. And I did have a tracheostomy. That sucked. Suction was for the birds.
So, I’m long winded, but thank you for listening. Honestly. I would love to see a therapist but being that I am already going to have to claim bankruptcy, and now have no income (poor hubby the breadwinner), I don’t have that option at the moment. I’ve applied for disability, but gracious the forms are daunting. It’s like they don’t understand that my brain isn’t fully functional and therefore I’m not capable of filling out 900 pages. You’d think the three interviews would have been enough. But I digress. Thank you for listening.