“Karen, what is your pain like?”, asks the nurse while tears stream down my cheeks. “It’s an eight. It’s stabbing in my head.” An 8 for me is a 50 for most people. I know I’m going to die and the doctors are oblivious because I have a disease that is 1 in a 1,000,000.
My pain is similar to the late night, emergency patients who my dad would see with abscessed teeth. I went with him to hold the suction and to ensure no lawsuits of sexual harassment. As I watched a lady in the dental chair, squeeze the arms of the chair and squeal as tears streamed down her face, I couldn’t imagine her pain. I feel like that now. I want to scream, “Dammit! Hear me! I’M IN PAIN! I’m worse off than only 3 months ago. Treat me like you would a cancer patient. Most cancer patients can hold their own weight enough to stand. I cannot even s.t.a.n.d.” When I sit upright I am sickly weak and dizzy. It feels like I have the flu but it never gets better. I can tell that my body is fighting an infection. I don’t get raised WBCs because parasites affect the body’s immunity.
Today, I considered shaving my head so I might be treated with more dignity. I wonder what shape my poor head is in, literally. How swollen is my head? Is there a dip in my skull, as seen in my saggital MRI?
Why can’t I stand? Peripheral neuropathy. Why can’t I walk? Peripheral neuropathy. Why can’t I handwrite? Peripheral neuropathy. Why were my pupils uneven? Why has my vision deteriorated and blurred? Why do I have Hashimoto’s thyroiditis? Why do I have white calcifications in my left ventricle? Why do I have pressure in my head and behind my eyes? Why do I have anemia? Why was I treated for Crohn’s disease? Why is my head pain “climb-up-the-walls” horrific? Why do I have burr cells and abnormal large platelets? Why was I on Remicade and chronic steroids? PERIPHERAL NEUROPATHY Shmow-mop-a-feeee!
I see a girl who took the summer off and has returned during fall semester. She see’s me and I can feel her empathy because she tries to avoid telling me how much worse I look. I receive the look that I once gave the woman in that dental chair. I can tell she’s taken back and aghast when she lays eyes on me. She tries her hardest to fill my request of getting a bed bath. We don’t have linens because of emergency relief patients admitted. She tries to find linens on the opposite side of our floor. None. She suggests brushing my teeth to make me feel cleaner. I agree and feel blessed that someone shows compassion. Doctor, RN, CNA, NSA, the title doesn’t impress. The sense of humanity and love does.
I cry. I cry for the pain that I’ve endured. I’ll miss my babies birthday parties, Finn (Nov. 1) and Vanessa (Nov. 14). How do I celebrate mine without them (Nov. 11)? If you call laying in a hospital bed “life”? I don’t want to be ill! I don’t want to be this far from my kids. I don’t want to have been treated for Crohn’s disease when I have a parasitic infection, not limited to the gut. I cry for not being taught about the dangers of parasites. I don’t like watching other people on television living their lives. I’m isolated, imprisoned in my own body. The pain is inhumane. I would scream if this were my children hurting. I’d do backbends to help a dog in pain. I hate this. I’d never choose this fate.
This has been a domino effect of crap treatment. I blame my OB-GYN for the 40 weeks of antibiotics and Prevacid which destroyed all good gut flora. I blame Dr. Sarah C. Glover at UF Health for trying me, like a guinnea pig, on BLACK LABEL Crohn’s drugs and chronic corticosteroids for dysentery. <—Major fu&k up, but I did what I was expected to do: listened to the doctor because doctors know best. Right. Sorry, but I’ve been badly jaded by the system.
Then, I came to my native state of SC to be near my mom. I was on Hospice but there’s no “parasitic box” for Hospice to mark. Hospice, like America, ignores the world health burden of parasites. “If you have a pulse, you have parasites” (The Parasite Summit). I’m in a hospital that has never diagnosed a neuroparasitic disease. Being that it’s a hospital, they’ll never admit that they don’t know what’s making me sick. Their answer for everything is “Peripheral neuropathy”. Initially it was “Thiamine deficiency” but that’s been corrected. This hospital’s overall review is a 3.0 out of 5.0; that’s a C, not above average. A rare disease needs a higher scale, research hospital.
Sorry that I’ve been out-of-touch on Facebook, my blog, voicemails and messenger. I’m fighting an upper respiratory bug on top of the underlying disease. This is adrenal stress to the max. I’ve been having nightmares, so I’ve laid off on watching The Forensic Files. I had a Cosby show marathon yesterday which lifted my spirits. E and I shared a love for The Cosby show. Our daughter even has a Cosby kid name, Vanessa. That wasn’t planned, but pretty cool coincidence.
My kids miss their mama, and I miss them. Vanessa asked if she could have a puppy since I can’t be there. She lost her last baby tooth one week ago. She’s not a baby anymore, not at all. Finn whispered that his 6th Birthday party will be at Chuck-E-Cheese. Heartbreak. People reading this might think, just get up….go be with your kids! It’s not that easy when you’re so weak that you can hardly make it to the 1st floor cafeteria from the 10th floor, in a wheelchair. My health is gone from infection of the brain. It’s what has happened and it will be proven. It is what it is and I can’t change the course of disease. I miss living life like in these pictures. I was sick in these (gastro) but gastro infection is easier than neuro infection.
Happy Autumn pals. Avoid steroids, please!
K